i

PSYCHOLOGICAL THERAPIES FOR ADULTS WITH AUTISM

“This marvelous book provides a thorough overview of current approaches

­covering a range of topics and strategies. This book will be greatly appreciated
by therapists working to support adults with autism as they increasingly are inte-
grated into communities, families, and the work force. A must have book!”
—Fred R. Volkmar, MD, Irving B Harris Professor, Yale University,
Dorothy Goodwin Endowed Chair, Southern Connecticut State University

“A ground-breaking work–likely to be a valuable resource and inspiration

to clinicians and researchers alike. This book illuminates the complexities of
adulthood for those on the spectrum and offers a diversity of perspectives and
approaches to ensure those complexities are better understood and addressed.”
—Connor Kerns, PhD, Associate Professor Psychology,
Director Anxiety Stress and Autism Program, University of British Columbia

“This much needed compendium overviews a wide range of available treatments

for autism. Inclusion of relevant research studies enables readers to evaluate the
strength of evidence for each. Case vignettes will be valuable to clinicians en-
gaged in providing services for adults with autism. This volume offers a useful
resource for trainees, scholars, and clinicians invested in the well-being of adults
with autism.”
—James McPartland, PhD, Yale Child Study Center
ii
iii

Psychological Therapies
for Adults with Autism

E D I T E D B Y D E B B I E S PA I N ,

FRANCISCO M. MUSICH, AND

S U S A N W. W H I T E

1
iv

1
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and you must impose this same condition on any acquirer.

Library of Congress Cataloging-in-Publication Data

Names: Spain, Debbie, editor. | M. Musich, Francisco, editor. |
W. White, Susan, editor.
Title: Psychological therapies for adults with autism / [edited by] Debbie
Spain, Francisco M. Musich, and Susan W. White.
Description: New York : Oxford University Press, 2022. |
Includes bibliographical references and index.
Identifiers: LCCN 2021044629 (print) | LCCN 2021044630 (ebook) |
ISBN 9780197548462 (paperback) | ISBN 9780197548486 (epub) |
ISBN 9780197548493
Subjects: LCSH: Autism. | Autism—Treatment. | Psychotherapy.
Classification: LCC RC553.A88 P79 2022 (print) | LCC RC553.A88 (ebook) |
DDC 616.85/882—dc23/eng/20211019
LC record available at https://lccn.loc.gov/2021044629
LC ebook record available at https://lccn.loc.gov/2021044630

DOI: 10.1093/​med-​psych/​9780197548462.001.0001

9 8 7 6 5 4 3 2 1

Printed by LSC communications, United States of America

v

CONTENTS

Contributors vii

1. Introduction 1
Susan W. White
2. Experiences of Psychological Therapy as an Autistic Person 6
David Mason, Eloise Stark, Francisco M. Musich, and Debbie Spain
3. Systemic Therapy 18
Rudi Dallos and Rebecca Stancer
4. Easing the Transition to Adulthood 31
Brianne Tomaszewski, Laura Grofer Klinger, Glenna Osborne,
and Claire Brito Klein
5. University-​Focused Interventions 50
David Schena, Grace Lee Simmons, Ashleigh Hillier,
and Susan W. White
6. Employment-​Focused Interventions 63
Carol Schall, Staci Carr, Lauren Avellone, and Paul Wehman
7. Social Skills Interventions 79
Cynthia I. D’Agostino and Francisco M. Musich
8. Positive Behavioral Support 93
Darren Bowring and Sandy Toogood
9. Cognitive Behavior Therapy 107
Xie Yin Chew, Ann Ozsivadjian, Matthew J. Hollocks,
and Iliana Magiati
10. Mindfulness-​Based Interventions 120
Kelly B. Beck
11. Emotion-​Focused Therapies 134
Anna Robinson and Caitlin M. Conner
12. Dialectical Behavior Therapy 148
Lorna Taylor, Ermione Neophytou, and Kate Johnston
13. Schema Therapy 165
Richard Vuijk, Hannie van Genderen, Hilde M. Geurts, and Arnoud Arntz
vi

vi Contents

14. Compassion-​Focused Therapy 176

James Acland and Debbie Spain
15. Eye Movement Desensitization and Reprocessing Therapy 192
Naomi Fisher and Caroline van Diest
16. Group-​Based Interventions 206
Peter E. Langdon, Adam Robertson, and Thecla Fellas
17. Offender-​Focused Interventions 222
David Murphy
18. Pharmacological Interventions 234
Tomoya Hirota and Bryan H. King
19. Ensuring Accessible and Acceptable Service Delivery for Adults
With Autism 253
Debbie Spain, Susan W. White, and Francisco M. Musich

Index 265
vi

CONTRIBUTORS

James Acland, PgDip Staci Carr, PhD

CBT Therapist Technical Assistance Coordinator and
National Adult Autism and ADHD Developmental Psychologist
Psychology Service School of Education Autism Center of
South London & Maudsley NHS Excellence
Foundation Trust Virginia Commonwealth University
Arnoud Arntz, PhD Xie Yin Chew, MPsych
Professor Clinical Psychologist
Programme Group Clinical Department of Psychological Medicine
Psychology National University Hospital
University of Amsterdam, Faculty of
Caitlin M. Conner, PhD
Social and Behavioural Sciences
Research Assistant Professor
Lauren Avellone, PhD Department of Psychiatry
Assistant Professor University of Pittsburgh School of
Rehabilitation Research and Medicine
Training Center
Cynthia I. D’Agostino
Virginia Commonwealth University
Licenciate in Psychology/​Master
Kelly B. Beck, PhD Psychopatology BA/​MA
Assistant Professor Associate Professor and Coordinator
Department of Rehabilitation Science of Female Autism Program
and Technology Department of Psychology and
University of Pittsburgh University Extension
Universidad CAECE
Darren Bowring, PhD, MSc, M(Ed)
Honorary Research Fellow Rudi Dallos, PhD
Centre for Educational Development, Emeritus Professor of Clinical
Appraisal, and Research (CEDAR) Psychology
University of Warwick Clinical Psychology
University of Plymouth
vi

viii Contributors

Caroline van Diest, MSc, RNLD Bryan H. King, MD, MBA

EMDR Trainer, Consultant and CBT Lisa and John Pritzker Family
Therapist Distinguished Professor in Child and
Synthesa Therapy Adolescent Psychiatry
Psychiatry and Behavioral Sciences
Thecla Fellas
University of California at San
Chief Executive Officer
Francisco
Head Office
Asperger East Anglia, Registered Claire Brito Klein, BA
Charity Graduate Research Assistant
Department of Psychology and
Naomi Fisher, MA, PhD
Neuroscience
Independent Clinical Psychologist,
University of North Carolina at
EMDR Consultant and Facilitator
Chapel Hill
Hove
Laura Grofer Klinger, PhD
Hannie van Genderen, PhD
Executive Director; Associate
Clinical Psychologist
Professor
Van Genderen Opleidingen
TEACCH Autism Program;
Hilde M. Geurts, PhD Department of Psychiatry
Professor Clinical Neuropsychology University of North Carolina at
and Head of the Section Brain & Chapel Hill
Cognition
Peter E. Langdon, BSc (Hons),
Brain & Cognition, Department of
PGCertHE, DClinPsy, PhD,
Psychology
CPsychol, FBPsS
University of Amsterdam
Professor and Consultant Clinical and
Ashleigh Hillier, PhD Forensic Psychologist
Professor Centre for Educational Development,
Department of Psychology Appraisal, and Research (CEDAR)
University of Massachusetts Lowell University of Warwick
Rainbow Unit
Tomoya Hirota, MD
Coventry and Warwickshire
Assistant Professor
Partnership NHS Trust
Department of Psychiatry and
Behavioral Sciences Iliana Magiati, DClinPsy, PhD
University of California San Francisco Associate Professor
School of Psychological Science
Matthew J. Hollocks, PhD, DClinPsy
University of Western Australia
Clinical Lecturer and Senior Clinical
Psychologist David Mason, MSc, BSc (Hons)
Department of Child & Adolescent PhD Student
Psychiatry Social, Genetic, and Developmental
King’s College London Psychiatry Centre
Institute of Psychiatry, Psychology, and
Kate Johnston, BSc, MSc, DClinPsy
Neuroscience
Consultant Clinical Psychologist
National & Specialist CAMHS
South London & Maudsley NHS
Foundation Trust
ix

Contributorsix

David Murphy, PhD David Schena

Chartered Forensic and Consultant Doctoral Student
Clinical Neuropsychologist Department of Psychology
Department of Psychology University of Massachusetts Lowell
Broadmoor Hospital
Grace Lee Simmons, MA
Francisco M. Musich, PhD Graduate Clinician and Researcher
Professor and Head of the Department Department of Psychology
of Child and Adolescent Psychology The University of Alabama
Department of Children and Debbie Spain, PhD
Adolescents Visiting Postdoctoral Clinical
Instituto de Neurología Cognitiva and Researcher
Fundacion ETCI Institute of Psychiatry, Psychology &
Ermione Neophytou, DClinPsy, BSc Neuroscience
Highly Specialist Clinical Psychologist King’s College London
National & Specialist CAMHS Rebecca Stancer, PhD
South London & Maudsley NHS Associate Professor
Foundation Trust Institute of Education
Glenna Osborne, MEd, CESP University of Plymouth
Director of Transition Services, Eloise Stark, DPhil (Oxon)
TEACCH Autism Program Postdoctoral Researcher
Clinical Instructor, Department of Department of Psychiatry
Psychiatry University of Oxford
The University of North Carolina at
Chapel Hill Lorna Taylor, BSc, MSc, PhD,
DClinPsy
Ann Ozsivadjian, BSc (Hons), Principal Clinical Psychologist
DClinPsy National & Specialist CAMHS
Independent Clinical Psychologist and South London & Maudsley NHS
Visiting Senior Lecturer Foundation Trust
King’s College London
Brianne Tomaszewski, PhD, MPH
Adam Robertson Assistant Professor
BSCeC Politics and History 2:1 TEACCH Autism Program,
Honours, MA International Relations Department of Psychiatry
and European Studies—​Distinction University of North Carolina at
Payroll Officer Chapel Hill
Anna Robinson, PhD Sandy Toogood, BSc, MA, PhD,
Lecturer FHEA, BCBA-​D
School of Education Professor
University of Strathclyde School of Education Sciences
Carol Schall, PhD Bangor University
Associate Professor Richard Vuijk, PhD
Rehabilitation Research and Training Clinical Psychologist
Center, School of Education Sarr Autism Rotterdam
Virginia Commonwealth University Parnassia Psychiatric Institute
x

x Contributors

Paul Wehman, PhD Susan W. White, PhD

Professor Professor
Department of Special Education and Center for Youth Development and
Counseling Intervention
Virginia Commonwealth University, Department of Psychology
School of Education University of Alabama
1

Introduction
S U S A N W. W H I T E ■

PREVALENCE OF ASD/​A UTISM IN ADULTS

Prevalence of autism spectrum disorder (ASD/​Autism) is estimated at one in

54 people (Maenner et al., 2020). Of people diagnosed with ASD/​Autism in
childhood, 85% continue to meet diagnostic criteria as adults (Billstedt et al.,
2005). As with most neurodevelopmental disorders, ASD/​Autism has histor-
ically been primarily studied as a disorder of childhood. However, this tide is
changing. An estimated 50,000 adolescents with ASD/​Autism age into adult-
hood every year (Shattuck et al., 2012). At this rate, we can expect upward of
a half-​million more adults with ASD/​Autism every decade. This reality is in-
consistent with the current research focus; only 2% of all ASD/​Autism-​related
research focuses on adult outcomes (U.S. Department of Health and Human
Services, 2017).

HISTORY OF WORK IN ADULTS WITH ASD/AUTISM

Although identification of ASD/​Autism among people who do not have co-​

occurring intellectual disability has risen in the last several years, adults with
ASD/​Autism face worse outcomes than peers without ASD/​Autism, as a group.
The majority of adults with ASD/​Autism are not consistently employed or are
underemployed (Engstrom et al., 2003). Young adults with ASD/​Autism often
lag behind peers in meeting the milestones of this developmental period (e.g.,
independent living) or experience declines in functioning (Picci & Scherf,
2015; Steinhausen et al., 2016). Adults with ASD/​Autism also experience
lower quality of life than age-​and ability-​matched peers (Bishop-​Fitzpatrick
et al., 2018).
2

2 P sychological T herapies for A dults W ith A utism

This is not just a problem for people with ASD/​Autism and their immediate
families. The lack of support for this population, and the suboptimal outcomes
experienced by too many with the disorder, is a societal problem. It has been
estimated that the lifetime per capita societal cost of ASD/​Autism is $3.2 mil-
lion (USD), with lost productivity and adult care the largest contributors to cost
(Ganz, 2007).

CO-​O CCURRING CONDITIONS IN ASD/​A UTISM AND

IN ADULTS

As demonstrated by the chapters in this book, co-​occurring mental health problems

are very common in adults with ASD/​Autism. Using data from Medicaid (which
provides health coverage to people who are low-​income or have disabilities in the
US), and including records of a sample of 1,772 adults with ASD/​Autism, Vohra and
colleagues determined that 81% had co-​occurring psychiatric disorders, relative to
41% of those without ASD/​Autism. An earlier large-​scale study of 1,507 adults
with ASD/​Autism on private insurance found that adults with ASD/​Autism had
higher rates of all major psychiatric disorders relative to non-​ASD/​Autism adults;
54% of the ASD/​Autism sample had comorbid psychiatric conditions (Croen et al.,
2015). Conservatively, it is estimated that over half of adults with ASD/​Autism are
diagnosed with at least one additional psychiatric disorder, a rate that is consider-
ably higher than for the general population (Croen et al., 2015). Although we do
not fully understand the reasons underlying the heightened risk for emergence of
problems such as anxiety, depression, and suicidality, it is established that people
with ASD/​Autism face challenges related to access to services and full inclusion in
society, a drop in available services around the time of exit from secondary school,
and limited mental health services (Laxman et al., 2019; Leno & Simonoff, 2020;
Maddox et al., 2019; Smith & White, 2020; Taylor & Seltzer, 2011). All of these
factors, along with biological risk factors, likely contribute to heightened risk.

BALANCING THE BRIDGE BETWEEN RESEARCH/​

SCIENCE AND PRACTICE

In terms of healthcare utilization, adults with ASD/​Autism utilize health care

services more often, and at a higher cost, than neurotypical adults and more than
adults with attention deficit/hyperactivity disorder (ADHD; Zerbo et al., 2019).
With respect to emergency department use, one of the most expensive forms of
healthcare, adults with ASD/​Autism have 2.3 times more emergency room visits
than neurotypical adults, and the reason for the visits is more than three times as
likely to be related to a psychiatric disorder, relative to nonautistic peers (Vohra
et al., 2016).
3

Introduction3

The presence of psychiatric, as well as nonpsychiatric, comorbidity among

adults with ASD/​Autism increases total medical expenses (Vohra et al., 2017).
The authors suggested that insufficient availability of, and access to, health-
care providers who are knowledgeable about ASD/​Autism and co-​occurring
conditions could contribute to high services costs, partly because delays in care
and prevention could lead to symptom worsening.
As previously stated, most clinical research in ASD/​Autism has been with chil-
dren and adolescents (Howlin, 2008; U.S. Department of Health and Human
Services, 2017). Most of the research on treatment for adults with ASD/​Autism
that does exist has been exclusively focused on people without intellectual disa-
bility (Interagency Autism Coordinating Committee, 2016). This state of affairs is
unfortunately consistent with the oft-​cited gap which spans nearly two decades
from research establishing an approach to use in community practice (Atkins
et al., 2016). As such, clinical researchers and direct care providers must work to-
gether to bridge science and service to address the needs of this growing popula-
tion. The extant research, in short, is not where we would like it to be (White et al.,
2018). However, the need for evidence-​based services is too great to simply wait
for more research. When we consider treatments for adults with ASD/​Autism, we
must hasten translation and dissemination. In this volume, we have endeavored
for every chapter to distill the existing research as it pertains to the topic at hand,
while fully acknowledging that for most of the approaches described herein,
much more research is needed. It is our hope that the readers of this volume gain
increased skill and confidence in their ability to successfully treat adult patients
with ASD/​Autism.
Finally, in introducing a book related to adults with ASD/​Autism, it is critically
important to consider language, specifically the debate over the use of person-​
first or identity-​first language. There are vocal proponents for each approach
(Bottema-​Beutel et al., 2021; Gernsbacher, 2017; Vivanti, 2020). In this volume,
we have opted to let the chapter authors determine the terminology they think
best fits the topic covered. This diversity in language reflects the current debate in
our field. Indeed, use of person-​first language may be, in some ways, more inclu-
sive, as not all people with ASD/​Autism prefer identity-​first, perhaps especially
those who are less verbal. On the other hand, there is evidence that many autistic
adults prefer identify-​first given the disorder’s centrality to identity (Bury, Jellett,
Spoort, & Hedley, 2020). Ideally, our terminology is flexible enough to accommo-
date all preferences and, above all else, reduce ableism and the marginalization of
those who have ASD/​Autism (Bottema-​Beutel et al., 2021). We endeavor to en-
sure that the diversity of opinions and experiences of adults with ASD/​Autism are
represented accurately in this volume. All case examples provided are anonymized
to protect confidentiality, and all quotes were included only with explicit permis-
sion to do so. It is our hope that these lived experiences related to being an adult
with ASD/​autism, mental health, and treatment inform the work of clinicians and
researchers in this area.
4

4 P sychological T herapies for A dults W ith A utism

REFERENCES

Atkins, M. S., Rusch, D., Mehta, T. G., & Lakind, D. (2016). Future directions for dis-
semination and implementation science: Aligning ecological theory and public
health to close the research to practice gap. Journal of Clinical Child and Adolescent
Psychology, 45(2), 215–​226.
Billstedt, E., Gillberg, C., & Gillberg, C. (2005). Autism after adolescence: Population-​
based 13-​to 22-​year follow-​up study of 120 individuals with autism diagnosed in
childhood. Journal of Autism and Developmental Disorders, 35(3), 351–​360.
Bishop-​Fitzpatrick, L., Mazefsky, C. A., & Eack, S. M. (2018). The combined impact of
social support and perceived stress on quality of life in adults with autism spectrum
disorder and without intellectual disability. Autism, 22(6), 703–​711.
Bottema-​Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2021).
Avoiding ableist language: Suggestions for autism researchers. Autism in Adulthood,
3(1), 18–​29.
Bury, S. M., Jellett, R., Spoort, J. R., & Hedley, D. (2020). “It defines who I am” or “It’s something
I have”: What language do (autistic) Australian adults [on the autism spectrum] prefer?
Journal of Autism and Developmental Disorders. doi:10.1007/​s10803-​020-​04425-​3
Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015).
The health status of adults on the autism spectrum. Autism, 19(7), 814–​823.
Engstrom, I., Ekstrom, L., & Emilsson, B. (2003). Psychosocial functioning in a group of
Swedish adults with Asperger syndrome or high-​functioning autism. Autism, 7(1),
99–​110.
Ganz, M. L. (2007). The lifetime distribution of the incremental societal costs of autism.
Archives of Pediatrics and Adolescent Medicine, 161(4), 343–​349.
Gernsbacher, M. A. (2017). Editorial perspective: The use of person-​first language in
scholarly writing may accentuate stigma. Journal of Child Psychology and Psychiatry,
58(7), 859–​861.
Howlin, P. (2008). Redressing the balance in autism research. Nature Clinical Practice
Neurology, 4(8), 407.
Interagency Autism Coordinating Committee. (2016). Strategic Plan for Autism Spectrum
Disorder. U.S. Department of Health and Human Services Interagency Autism
Coordinating Committee website. https://​iacc.hhs.gov/​publications/​strategic-​plan/​2017/​
Laxman, D. J., Taylor, J. L., DaWalt, L. S., Greenberg, J. S., & Mailick, M. R. (2019). Loss
in services precedes high school exit for teens with autism spectrum disorder: A
longitudinal study. Autism Research, 12(6), 911–​921.
Leno, V. C., & Simonoff, E. (2020). ASD and co-​occurring psychiatric conditions: A
conceptual framework. In C. A. M. S. W. White & B. M. Maddox (Eds.), The Oxford
Handbook of autism and co-​occurring psychiatric conditions (pp. 3–​28). Oxford
University Press.
Maddox, B. B., Crabbe, S. R., Fishman, J. M., Beidas, R. S., Brookman-​Frazee, L., Miller,
J. S., Nicolaidis, C., & Mandell, D. S. (2019). Factors influencing the use of cogni-
tive–​behavioral therapy with autistic adults: A survey of community mental health
clinicians. Journal of Autism and Developmental Disorders, 49(11), 4421–​4428.
5

Introduction5

Maenner, M. J., Shaw, K. A., Baio, J., Washington, A., Patrick, M., DiRienzo, M.,
Christensen, D. L., Wiggins, L. D., Pettygrove, S., Andrews, J. G., Lopez, M., Hudson,
A., Baroud, T., Schwenk, Y., White, T., Rosenberg, C. R., Lee, L.-​C., Harrington, R.
A., Huston, M., . . . Dietz, P. M. (2020). Prevalence of autism spectrum disorder
among children aged 8 years—​Autism and Developmental Disabilities Monitoring
Network, 11 sites, United States, 2016. MMWR Surveillance Summaries, 69(4), 1–​12.
Picci, G., & Scherf, K. S. (2015). A two-​hit model of autism: Adolescence as the second
hit. Clinical Psychological Science, 3(3), 349–​371.
Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J.
L. (2012). Postsecondary education and employment among youth with an autism
spectrum disorder. Pediatrics, 129(6), 1042–​1049.
Smith, I. C., & White, S. W. (2020). Socio-​ emotional determinants of depressive
symptoms in adolescents and adults with autism spectrum disorder: A systematic
review. Autism, 24(4), 995–​1010.
Steinhausen, H. C., Jensen, C. M., & Lauritsen, M. B. (2016). A systematic review and
meta-​analysis of the long-​term overall outcome of autism spectrum disorders in ad-
olescence and adulthood. Acta Psychiatrica Scandinavica, 133(6), 445–​452.
Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-​secondary educational ac-
tivities for young adults with autism spectrum disorders during transition to adult-
hood. Journal of Autism and Developmental Disorders, 41(5), 566–​574.
U.S. Department of Health and Human Services. (2017). Report to Congress: Young
adults and transitioning youth with autism spectrum disorder.
Vivanti, G. (2020). Ask the editor: What is the most appropriate way to talk about
individuals with a diagnosis of autism? Journal of Autism and Developmental
Disorders, 50, 691–​693.
Vohra, R., Madhavan, S., & Sambamoorthi, U. (2016). Emergency department use among
adults with autism spectrum disorders (ASD). Journal of Autism and Developmental
Disorders, 46(4), 1441–​1454.
Vohra, R., Madhavan, S., & Sambamoorthi, U. (2017). Comorbidity prevalence, health-
care utilization, and expenditures of Medicaid enrolled adults with autism spectrum
disorders. Autism, 21(8), 995–​1009.
White, S. W., Simmons, G. L., Gotham, K. O., Conner, C. M., Smith, I. C., Beck, K. B.,
& Mazefsky, C. A. (2018). Psychosocial treatments targeting anxiety and depression
in adolescents and adults on the autism spectrum: Review of the latest research and
recommended future directions. Current Psychiatry Reports, 20, 82.
Zerbo, O., Qian, Y., Ray, T., Sidney, S., Rich, S., Massolo, M., & Croen, L. A. (2019). Health
care service utilization and cost among adults with autism spectrum disorders in a
U.S. integrated health care system. Autism in Adulthood, 1(1), 27–​36.
6

Experiences of Psychological
Therapy as an Autistic Person
D AV I D M A S O N , E L O I S E S TA R K , F R A N C I S C O M . M U S I C H ,
A N D D E B B I E S PA I N ■

KEY CONSIDERATIONS

• Psychological therapies are, by definition, complex interventions,

comprised of specific and nonspecific elements. Nonspecific elements
of therapy (e.g., the therapeutic relationship, capacity to empathize) are
pivotal for the success of specific elements of therapy (e.g., particular
interventions and techniques).
• Some autistic adults benefit from adaptations to standard therapeutic
work; adaptations may be overarching and general (e.g., a change
to the pace or mode of delivery) or highly individual and specific
(e.g., accommodating particular sensory or information processing
preferences).
• Therapists should think together with autistic clients about how to
enhance accessibility of the therapeutic context and interventions used.
• Enhancing resilience is an important aspect of psychological therapy,
irrespective of the reason for referral or therapeutic modality offered.

INTRODUCTION

Many autistic adults experience mental health symptoms or conditions at some

point in their lives (Lai et al., 2019), often more than one concurrently (Lever &
Geurts, 2016). During the past 20 years, there has been an increasing emphasis
on developing and evaluating psychological therapies for autistic adults (White
et al., 2018). There is now promising evidence of the effectiveness of cognitive
7

Experiences of Therapy as an Autistic Person7

behavior therapy (CBT; Spain, 2019); mindfulness (Hartley et al., 2019); social
skills interventions (Ke et al., 2018); psychosocial interventions, such as those
targeting social cognition (Bishop-​Fitzpatrick et al., 2014); and employment-​fo-
cused interventions (Hedley et al., 2017). However, most research evidence comes
from uncontrolled (nonrandomized) studies recruiting, on average, younger au-
tistic adults without a concurrent intellectual disability.
Importantly, clinical and empirical findings indicate that some autistic
individuals benefit from adapted psychological therapy (see other chapters in
this book). Adaptations may include ensuring that the formulation incorporates
autism-​relevant aspects and that the environment and therapy process are tailored
to the sensory, linguistic, and social preferences of autistic individuals (Adams &
Young, 2020; Spain & Happé, 2020; Stark et al., 2021). However, there are several
factors that affect the likelihood of suitably adapted input being offered, including
a nuanced knowledge about autism and the potential need for adaptations for a
wide range of client presentations.
This chapter focuses on the personal experiences of five autistic adults who
have had psychological therapy individually and/​or in groups; David, Eloise, Jane,
Graham, and Miranda. Their narratives provide rich descriptions of the overt
and subtle aspects of therapy that have been less or more helpful, and they high-
light the centrality of the therapeutic relationship. There are similarities in some
of their experiences, despite seeking services for different concerns, having dif-
ferent life stories, and living on three continents. This suggests that there may
be key considerations for therapists working with autistic adults, regardless of
the setting. Additionally, Jane’s and Miranda’s mothers offer their perspectives
about supporting their grown-​up daughters to access strengths-​based psycholog-
ical input.
The decision to place this chapter at the outset of the book is quite deliberate.
We invite the reader to reflect on the accounts written by David, Eloise, Jane,
Graham, and Miranda; to be curious about how and why some psychological
therapy modalities and interventions have seemed more accessible and relevant;
to consider which nonspecific elements of the psychological therapy may have
enhanced the process for each person; and in turn to consider what this might
mean for clinical work going forward.
The first-​person accounts that follow are verbatim comments from each
contributor.

DAVID

My two experiences of therapy were an 8-​week course of counseling when I was

around aged 25, and then a 12-​week course of behavioural activation when I was
around 30 years old. The former was not very effective in a broad sense, but was
so in a specific sense. The latter has been genuinely life changing. I can confidently
assert I would not be here were it not for the latter treatment.
8

8 P sychological T herapies for A dults W ith A utism

So, what worked? In the counselling I received, I was encouraged to talk about
my situation and reflect on what I was experiencing (at that time I was depressed
by my current employment situation). In the specific sense this was helpful, be-
cause it helped me realise I could quit my career at the time. (Despite having
multiple jobs, quitting a “career” was an option that never occurred to me). In a
broader sense it failed to work, as I quickly relapsed into several other bouts of
depression—​what I experienced did not generalise beyond the situation at hand.
This is in spite of how “obvious” it may be to leave a work environment that is un-
suitable. Moreover, while it did help me realise I could leave the job I held, it did
not help me realise I could entirely change career.
On the other hand, behavioural activation (BA) immediately made sense to
me. I often joke it is because it consisted of “boxes and arrows” (of which I am
fond). While this may seem to trivialise the approach it was genuinely transform-
ative—​these boxes and arrows gave me a framework to organise my behaviours
and experiences. The use of Antecedent /​Behaviour /​Consequence diagrams
(“ABC”s) helped me realise that a behaviour could lead me to feel worse, but this
behaviour had an antecedent—​if the antecedent was an avoidance behaviour
I tended to feel worse (and the converse was true for approach behaviours).
I still cannot fully put it into words, but this framework helped me connect in-
ternal experiences to internal states or external states. This removed some of the
(frustrating) mystery from the world, and why I was responding to events in the
way that I was. For example, avoiding doing a task that was aversive—​good in the
short run, but likely to worsen my mood in the long run. This immediately made
an impact on my mood, and my motivation. Once I had learned how to “do the
ABCs” in a situation, I became more agentic and able to affect the world around
me in the way I wanted. I do flag from time to time—​indeed, it might be odd if
I did not—​however, I have a solid process I can use to analyse a situation and im-
plement behaviours that will help.
Are there other ingredients? Counselling, therapy, behavioural activa-
tion . . . while these all have processes or manuals, guidelines, and good practices,
there are three extra factors that I think are important, based on my reflections
on therapy. First, the patient (in this case me); second, the therapist; third, the
interaction. In case one, I was severely underprepared to be counselled. I had no
idea what depression was. Consequently, I had no vocabulary or understanding
of what depression is like (I only had the diagnostic label from my general practi-
tioner—​with no explanation). In fact, at the time, I thought everyone functioned
exactly like me (and that they were just more successful); I had no concept that
people were different. The counsellor was, as far as I could determine, compas-
sionate and interested in helping me. He was very good at building rapport (in-
deed, I felt comfortable disclosing my thoughts/​feelings etc. despite the novel
surroundings which often set me on edge). In sum, I would say that I was not in a
position to engage with therapy in an optimal way.
In contrast, with BA, I was more aware of depression and I was tired of being
depressed. I remember being asked why I wanted therapy and my response was
something like “so that I never have to see someone like you again” (with the
9

Experiences of Therapy as an Autistic Person9

required caveat that this was not intended negatively). I went into therapy wanting
a toolkit to deal with depression. By this point I had realised that I was likely to be
prone to depression, and I guess I was implicitly aware that my previous therapy
had not generalised beyond that specific situation. I think I brought a readiness
for recovery to the table, and I was prepared to go through a range of experiences
to make it happen—​over the course of the therapy, I remember facing very aver-
sive experiences, and coming out better for it. The therapist was truly phenom-
enal. They were attentive, constantly checked in with me, agreed on an agenda for
each session, and adapted their practice when we realised that I had a good grasp
of BA, but I still needed a few extra skills. Indeed, when I showed a wider interest
in BA they provided me with a reading list! Our interaction was really good—​I
felt able to fully discuss my problems (in so far as I was aware and able to) and the
therapist was able to challenge me if I was being reticent or not providing a lot of
verbal input. Moreover, they were willing to challenge my interpretations of my
experiences and challenged me to consider alternative interpretations. This was
vital as I was heavily invested in the rightness of my thoughts, and I found alter-
native interpretations very challenging to interpret (I still do, but I have managed
to relax this a little).
My subsequent thoughts of therapy are largely informed by my positive
experiences after case two. The toolkit I built has served me well, and I have man-
aged to add a few extra tools to it. The “boxes and arrows” generalise to pretty
much everything I encounter, and that has been a life-​changing skill set. I don’t
think this will apply to every autistic person, but I do think something like this
approach could be helpful—​some level of abstract rule-​based process is great for
applying to novel situations. Although we did spend around 8 weeks practicing
this and agreeing test scenarios to try it out.
Personally, I also think being challenged in the way I interpreted my thoughts
and behaviours was fundamental to getting better. I can get so wrapped up in
what I think and really struggle to see an alternative (or, frankly, to consider that
an alternative could be right!); the typical “black and white” thinking.

ELOISE

My first experience of psychological therapy was CBT for obsessive compulsive

disorder (OCD) during my undergraduate degree. I had been randomly attacked
the year earlier by a man who was distressed and unwell and tried to strangle me
in the street in broad daylight. I was utterly terrified at the time, and the fear I ex-
perienced persisted long beyond the event, morphing into a semblance of OCD.
I feared that if I did not keep everything “in its place” and sparklingly clean, it
would hurt my family in some way. So, I showered several times a day with harsh
cleaning products, kept my room as tidy and clean as possible (a big contrast to
my previously messy student bedroom), and spent hours organising items in my
room to be “just right” at perfect angles like I was teaching my belongings a ge-
ometry lesson.
10

10 P sychological T herapies for A dults W ith A utism

The way I formulate this presentation with hindsight is that my autistic brain
has always experienced the unknown and uncertain as worrisome and potentially
threatening. Having something completely uncontrollable and life threatening
occur sent my threat system into overdrive. By focusing upon something I felt
I could control—​danger in the form of “contamination” and “germs”—​I was able
to regain a felt sense of control over my external world.
The therapist I met was mild and quietly spoken, and listened to me carefully,
making detailed notes on everything I said. I had never experienced therapy be-
fore and was completely baffled by the new social rules and requirements. I was in
such a heightened threat mode that I was constantly hypervigilant and on guard
and consequently really struggled to put any of the cognitive-​behavioural theory
I was learning into practice via the technique of “exposure and response preven-
tion.” For example, I knew that my safety behaviour of always carrying antibac-
terial wipes in my backpack was maintaining the anxiety by preventing me from
learning that it would be fine if I did not wipe every surface I touched, but I was
unable to test out leaving them at home and not doing so.
I think this fear of exposure techniques and unwillingness to experiment was
based upon several factors. First, at this point I did not have my autism diagnosis.
The therapist saw my rigidity and deigned me too inflexible for therapy. Actually,
I just needed support with the hyperarousal to bring me into a state in which
I could react to stimuli more flexibly.
Second, the double empathy problem, by which autistic and nonautistic
people both struggle to interpret each other, rather than the lack of empathy
being attributed solely to the autistic individual, felt really prominent within our
interactions. I did not feel understood by the therapist, although I knew that she
was trying her best.
Third, I was trying to camouflage my difficulties like I had always done. When
asked “how are you?” I responded with, “fine thank you, how are you?” like a
robot. I now know that my authentic, autistic self is perfectly fine and accepted
by others. Now, I use mindfulness strategies to prevent myself from slipping into
camouflaging autopilot, but then I did not have those skills.
My second experience of psychological input was trauma-​focused CBT during
my postgraduate years. This time, the therapist knew about my autism as I had
now been formally diagnosed prior to starting the therapy, and we built my au-
tistic elements into the formulation. For example, not only did I learn about how
the brain responds to trauma with disconnect between the affective regions, hip-
pocampus, and frontal cortex, but we were able to factor in how autism-​specific
factors such as sensory hypersensitivity and my detail-​focused processing fed into
the trauma model. I found the CBT model’s systematic, scientific approach was
helpful for my scientific way of analysing the world. In this course of therapy, I was
able to talk about my urge to camouflage, and with this knowledge the therapist
was able to bring out my authentic self and I felt able to get things wrong and be
myself.
I have also found compassion to be an important ingredient in therapy, as my
autistic brain, through no fault of its own, often finds the threat system to be
1

Experiences of Therapy as an Autistic Person11

activated more frequently, leading to less relative time for the soothing system to
be engaged. Encouraging self-​compassion, acting in accordance with my values
of kindness, and using my intellect and skills to show compassion to others, has
helped rebalance my brain and body to a point where I feel healthy, strong, psy-
chologically minded, and resilient.
I think the most important lesson I learned within therapy and through per-
sonal exploration was a sort of cognitive diffusion, an idea encapsulated by the
quote often attributed to Viktor Frankl: “Between stimulus and response there is
a space. In that space is our power to choose our response. In our response lies
our growth and our freedom.” I learned that whatever comes into my head, I am
in charge of my response and my behaviour. I can choose to worry or ruminate,
or I can choose to do something more positive with my time. Similarly, I can
appraise something as threatening because it makes me feel slightly anxious, or
I can normalise the feelings and appraise it as safe enough. I am grateful to both
therapists I had on my journey to well-​being, and I hope to use my experiences to
help others also benefit from therapy.

JANE

I have attended many therapies in my life. I honestly think that I was able to learn
something from each and every one of my previous therapists, but none of them
were able to help me with my most important problem: that is, to be on the au-
tism spectrum. One of the therapists helped me with improving my daily living
skills and occupying my time, another helped me with finishing secondary school,
another with my baking skills and some with my social behaviours, but no one
diagnosed me with autism. In total, I went to five or six therapists, until I was re-
ferred to my current therapist, who has been really helpful.
I have found it useful to learn how to manage my emotions. One of my previous
therapists suggested I learn to knit roses, which I find very relaxing. She also told
me that it was good for me to be creative and do manual things. Another therapist
told me to focus on baking as I like this a lot, and that I should continue doing
it and not be ashamed to charge for the end product. Also, one therapist told me
to try to cook something different each day, and she helped me to be more or-
ganized in secondary school. What I have found most helpful is when therapists
have helped me to be more structured and organized and break things down step
by step.
I think therapists should know what affects people with autism daily and how
they feel. Also, it would be good for therapists to approach us knowing that we
are different than others; that we might struggle sometimes and, at these times,
we need to be approached gently. Another important thing is for therapists to give
us concrete and tangible steps to follow, to offer practical strategies for us, au-
tistic people, so that we can achieve things that will make us feel good about our-
selves, like having more friends and finding a partner. Therapists who work with
us should specialize in autism, because despite seeing several professionals, I was
12

12 P sychological T herapies for A dults W ith A utism

diagnosed really late in life and struggled and suffered for a long time throughout
my life because of that. One more thing I think it would be good for therapists to
do is more surveys and to measure what are the most frequent worries for autistic
people.

JANE’S PARENTS

Our 30-​year-​old daughter has, for many years, attended several different therapies
without good outcome. We noticed that she had social difficulties. We were re-
ferred to a specialist who diagnosed Jane with autistic at the age of 28. It wasn’t
easy for us as parents to accept her condition, but with our family and indi-
vidual meetings with the therapist, we were able to accept, learn, and change our
attitudes towards Jane. We feel that a specific approach done by a specialist ther-
apist, combined with CBT, improved her condition and opened up a new path
for her.
Finding an adequate therapy tailored for people with autistic is of utmost im-
portance and in our opinion was very useful. Our daughter really benefitted
from therapy. Her social interaction improved significantly and her repetitive
behaviors, which were very persistent, were less intense and frequent. We think
that Jane gained from a structured therapy, and not from unstructured approaches.
Therapeutic work needs to involve consistency—​even if Jane gets frustrated at
times—​and progressively, she is helped to acquire tools to improve.
It is important for therapists to know about autism in order to identify the
patient’s needs, behaviors, and feelings. In addition to a proper assessment and
therapy, it is important to address social skills, daily life habits, and disruptive
behaviors that might interfere with social integration.

GRAHAM

With my last therapist, I was able to achieve what no previous therapists wanted
to believe: that my depression, which lasted for three years, could be treated
without medication. In my opinion, there was previously a problem with the
method: therapists were unable to find techniques relevant to my functioning and
values as a person. When my depression lifted, I was able to find again small old
daily things to enjoy. I was able to achieve this without having to use “normalizing”
ways that had been proposed to me and were against my core values as a person.
Going from one professional to another, without options, only worsened my con-
dition. I would have liked to find an adequate professional sooner.
I found it useful that my therapist was able to understand me, even though
I sometimes struggle to talk properly or as “normal people” expect. In our first
sessions, he was able to understand my logic and way of processing informa-
tion. In contrast to working with my previous therapists, we implemented other
strategies that had not been suggested before, or had even been vetoed. With my
13

Experiences of Therapy as an Autistic Person13

current therapist it was not always easy to understand each other, but it has helped
a lot that he can understand how people with autistic “talk”: we can sometimes
talk without using neurotypical language, like computers using programming lan-
guage. For me, it was good just to be able to myself. Also, CBT was useful, as this
was similar to a scientific method. I was able to change unhelpful beliefs about
several topics.
To work effectively with people with autism, therapists should stop trying to
“normalize” or expect us to use conventional neurotypical ways. Something I have
noticed recently is that people with autism are genuine and like genuineness. We
dislike pretending and relying on false interests to reach a goal. We need and must
want to do it. When something interests us and it is within our possibilities, we can
do it in an obsessive way and not stop. In my case, being tired and experiencing
chronic pain has stopped me from dedicating more time to things I want to do
more of. It is also important to create and implement alternative ways, to be flex-
ible and innovate, for achieving what one might want at a particular time. One
of my mottos is “there is always another way to do things according to function-
ality.” So it is that in this time of pandemic I see this is a time of opportunity, as all
interactions are internet-​based or remote. Lastly, the therapist needs to be there
for when we are facing new challenges and tasks. carefully paying attention to
sensory issues and means of escape. Often, we want to achieve many things, but
the environment and context can be inappropriate to our senses. Also, it is im-
portant to pay attention to how much we can interact socially, without becoming
exhausted from the interactions.

MIRANDA

I think that therapists tend to expect their patients to want to be “normal.”

However, many autistic people do not feel any need to become like allists.1 We do
not see our perceptions of life as inferior or less valid than those of allists. Autism
is not a disability. Allists lack some skills that come easily to autists, and vice versa,
and that does not mean that either condition is a defect. However, the vast ma-
jority of humans are allists, and that means that society in general is tailored to
their needs and abilities, so autists need to be able to adapt to a system that was
not built for us.
The main thing I have to say about mindfulness therapy is that being aware in
one’s body is not always as beneficial for autists as it is for allists, considering the
various sensory conditions an autist might have. Learning to be present in one’s
body to calm oneself down is not particularly helpful if one of the stressors that
is contributing to the heightened state of arousal is physical stimulation, such as
dampness of the skin or unpleasant smells.

1. A person who does not have autism.

14

14 P sychological T herapies for A dults W ith A utism

Instead, I feel that the opposite strategy might work better for many autists, as it
has for me. I withdraw from my senses and my body into my mind, sequestering
my presence in my thoughts, to calm myself down and gain control of my
emotions. Rejecting sensory data, which often contribute to stress and bind one
in the moment, allows me to separate myself from a situation and its emotional
accoutrements, leaving me free to calm myself and eventually return to a situation
without my previous fervor.
If a patient has a history of psychiatric medication, especially if their
prescriptions have changed repeatedly to find an acceptable balance between
symptoms, they may have a heightened awareness that emotional states are essen-
tially various chemicals influencing one’s brain chemistry and that emotions are
not always connected to or caused by the situation to which they are ostensibly
reacting to. This means that that patient may recognize that an emotion is part of
the circumstances of an incident, rather than part of the patient, and can often be
removed by taking the time for it to wear off.
Things I want to say that aren’t long enough for a paragraph:

• Your transient emotions are not part of who you are.

• One might use up emotional chemicals without risks or consequences
by imagining someone else (a character to whom they relate, perhaps)
expressing or experiencing the unwanted emotions (“getting in
character”).

MIRANDA’S MOTHER, MARION

My daughter is both very autistic, and very articulate. We have been lucky enough
to be able to work with a number of highly skilled therapists over the last 15 years.
All of them were dedicated, highly trained, and caring. They came from a number
of disciplines—​traditional therapies focusing on the emotions, pragmatics from
the speech therapists and from psychologists, cognitive styles of therapy, exposure
therapies for her OCD, and many others.
All of them had one very big difficulty, which has permeated her life elsewhere,
as well: translating from the language that most of us speak into “autistic English.”
If you ask an “allist,” as she calls nonautistic people, what was helpful or not in
their therapy, they know what you mean, and how to answer the question. If you
ask the same question of an autist, it is far too vague and amorphous a question for
them, unless you have already translated a dozen similar ones for them.
What does it mean to translate therapy for an autist? First, draw the connection
between a person’s feelings (acknowledged or unacknowledged) and how they act,
how they are perceived, and how this affects their life and their ability to reach
their goals. Autists will never instinctively see things that the rest of us come to
see when we are ready to see them. They lack the perceptual mechanisms that
allow the rest of us to connect those dots. They never get the information that we
get if we let ourselves see it. It is not a matter of denial or repression, but of absent
15

Experiences of Therapy as an Autistic Person15

information. Just as one would never expect a blind person to understand body
language, or a deaf person to interpret meaning from tone of voice, therapists
need to work around an autistic person’s inability to perceive those things. Then,
the autist needs guidance in understanding what these cues say about what the
autist is doing and about what results they will get from what they are doing.
Therapy that focuses on emotional insight cannot produce the same results for
an autist as it would for an allist without this end-​piece that connects it to social
interactions in meaningful ways for them. This is a piece that most of us fill in,
almost by instinct, but it cannot work that same way for an autist.
On the other hand, my daughter has never been unaware of her own feelings,
nor given to hiding them from herself or others. She has a radical honesty that
may come from her ongoing inability to see the social pressure exerted on the
rest of us to keep certain emotions or states hidden. She sees no point to most of
these social conventions and tends to dispense with them as not worth her time.
As a result, she has a lot less denial or repression to unravel than you or I would
have. She does not need to get in touch with her feelings, because she has never
learned to suppress them. This means that a lot of the traditional work of therapy
is utterly unnecessary. Trying to do that work has resulted in endless frustration
for all parties involved.
I believe that success in therapy for her has resulted when the therapist not only
respects her opinion about what is working, what she needs, but also asks for it
regularly and responds to that feedback. Every autist is different, perhaps to an
even greater degree than the rest of us are. Trying to make the therapist’s model of
how things should work fit this particular patient has backfired badly.

CONCLUSIO N

Throughout the narratives in this chapter, we can identify some important

considerations for therapists working with autistic clients. We acknowledge that
these narratives, despite their enormous value, reflect the views of seven people,
and there is a strong case for more systematic research into user perspectives in
the future.
It appears that some of the common factors that have contributed to better
therapeutic experience and outcomes are a structured, straightforward, tan-
gible, and concrete approach. That is, a more formulaic approach used in sev-
eral psychological therapies may be more suited for autistic clients who describe
an analytical processing style. Additionally, including strategies that are offered
visually as well as verbally, as mentioned previously (“boxes and arrows”), may
augment understanding of abstract concepts frequently referred to in clinical
work. Adapting the therapeutic setting and structure (e.g., amount of time per
session, sensory stimuli, and linguistic accommodations) to the specific sensory
and cognitive needs of the autistic client also appears fundamental. Potentially,
the combination of these factors may be more suited to autistic clients and their
processing style.
16

16 P sychological T herapies for A dults W ith A utism

The clinician’s personal style appears to be of great importance; in particular,

actively and compassionately engaging in questions and conversation that aim to
understand the specific needs, style, and level of functioning of autistic clients.
As noted prominently in one narrative, autistic people often hide, or mask, their
problems with a veneer of “normality.” This could be a significant obstacle to
therapy and suggests that a good rapport between client and therapist may help to
overcome this issue. Also, in some cases, when providing input for co-​occurring
conditions rather than core autism traits, adding autism-​relevant aspects to the
case formulation may enhance outcomes. While not always possible, therapists
should consider involving family or significant others in clinical work, subject
to client consent. This may provide a better understanding of the autistic adult,
as well as their family, environment, and systemic context, thereby improving
quality of life for all parties.
The suggested considerations highlighted in this chapter may be useful for
clinicians working with autistic adults and may contribute to making therapy more
accessible and effective. Overall, we consider one of the most important aspects of
therapy is for therapists to maintain a curious and reflective stance toward clients,
given the heterogeneity and uniqueness of each individual presenting for therapy.
Incorporating the uniqueness of the client into therapeutic work will most likely
result in a more beneficial experience, not just for the client but also for the ther-
apist. Ultimately, this attitude toward clients can be thought of as transdiagnostic,
as all clients are unique in their presentation. We hope that, in the future, more
research will be available, providing a better understanding for therapists on how
to improve therapy and meet the needs of autistic adults more adequately.

REFERENCES

Adams, D., & Young, K. (2020). A systematic review of the perceived barriers and
facilitators to accessing psychological treatment for mental health problems in
individuals on the autism spectrum. Review Journal of Autism and Developmental
Disorders, 1–​18. https://link.springer.com/article/10.1007/s40489-020-00226-7
Bishop-​Fitzpatrick, L., Minshew, N., & Eack, S. (2014). A systematic review of psychoso-
cial interventions for adults with autism spectrum disorders. Journal of Autism and
Developmental Disorders, 43(3), 687–​694.
Hartley, M., Dorstyn, D., & Due, C. (2019). Mindfulness for children and adults with
autism spectrum disorder and their caregivers: A meta-​analysis. Journal of Autism
and Developmental Disorders, 49(10), 4306–​4319.
Hedley, D., Uljarević, M., Cameron, L., Halder, S., Richdale, A., & Dissanayake, C.
(2017). Employment programmes and interventions targeting adults with autism
spectrum disorder: A systematic review of the literature. Autism, 21(8), 929–​941.
Ke, F., Whalon, K., & Yun, J. (2018). Social skill interventions for youth and adults with
autism spectrum disorder: A systematic review. Review of Educational Research,
88(1), 3–​42.
Lai, M., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., Szatmari, P., & Ameis,
S. H. (2019). Prevalence of co-​occurring mental health diagnoses in the autism
17

Experiences of Therapy as an Autistic Person17

population: A systematic review and meta-​analysis. The Lancet Psychiatry, 6(10),

819–​829.
Lever, A. G., & Geurts, H. M. (2016). Psychiatric co-​occurring symptoms and disorders
in young, middle-​aged, and older adults with autism spectrum disorder. Journal of
Autism and Developmental Disorders, 46(6), 1916–​1930.
Spain, D. (2019). Cognitive behaviour therapy. In E. Chaplin, D. Spain, & C. McCarthy
(Eds.), A clinician’s guide to mental health conditions in adults with autism spectrum
disorders: Assessment and interventions (pp. 290–​307). Jessica Kingsley Publishers.
Spain, D., & Happé, F. (2020). How to optimise cognitive behaviour therapy (CBT) for
people with autism spectrum disorders (ASD): a delphi study. Journal of Rational-​
Emotive & Cognitive-​Behavior Therapy, 38(2), 184–​208.
Stark, E., Ali, D., Ayre, A., Schneider, N., Parveen, S., Marais, K., Holmes, N., & Pender,
R. (2021). Psychological therapy for autistic adults (1st digital edition). Authentistic
Research Collective. htpps://​eloisestark.org/​Authentistic.html
White, S., Simmons, G., Gotham, K., Conner, C. M., Smith, I., Beck, K., & Mazefsky,
C. (2018). Psychosocial treatments targeting anxiety and depression in adolescents
and adults on the autism spectrum: Review of the latest research and recommended
future directions. Current Psychiatry Reports, 20(10), 1–​10.
18

Systemic Therapy
R U D I D A L L O S A N D R E B E C C A S TA N C E R ■

KEY CONSIDERATIONS

• To what extent do adults with a diagnosis of autism experience

differences and similarities in their relationships and families?
• Autism is an extremely diverse condition and how it impacts is unique
to each family. Consequently a systemic approach attempts to be flexible
and adaptable.
• Adults with a diagnosis of autism may be parents. The focus of systemic
work may be with their children and relationships with them.
• Insecure attachment and trauma are common aspects of most clinical
presentations and also feature in the development of autism and
influence their relationships.
• Systemic therapy attempts to address all relationships in a family and
considers how these may impact the well-​being and lives of adults with
autism.
• Structured and manualized approaches to systemic family therapy
(FT) may be compatible with aspects of the autism phenotype which
emphasize the need for predictability and clarity.

INTRODUCTION

Arguably, the needs of adults with a diagnosis of autism have been relatively
overlooked, leading to legislation in the United Kingdom calling for more serv-
ices and support (Department of Health 2010a; NHS, 2017; National Autistic
Society, “Autism Facts and History,” accessed 22 March 2018; NICE guidelines
[CG128]). Services continue to be disjointed, however, and many adults find it
difficult to access the help they need (McCarthy et al., 2015). Although the leg-
islation was welcomed, our own experience of working with adults suggests that
19

Systemic Therapy19

services targeting individuals are not likely to be successful unless they acknowl-
edge the community, family system, strengths, interests, and unique qualities of
adults on the autistic spectrum (Warner et al., 2019). In this chapter, we will out-
line a systemic therapeutic orientation to working with the relational context in
which adults with a diagnosis of autism live. There are a number of fundamental
features of such an approach: firstly, the focus is on the nature of the relationships
between people and how these may serve to exacerbate or alleviate difficulties
and challenges. Secondly, there is a recognition that people and problems rarely
present as neatly packaged and exclusive, such that “autism” is often accompanied
by other issues of living, such as anxieties, traumas, losses, and conflicts (Lever
& Geurts, 2016; Manion & Leader, 2013; Strang et al., 2012). Taken together, this
may mean that the focus of systemic therapy may not be on the features of autism
as such, and in some cases not predominantly on the person with the diagnosis,
but on the wider network of their relationships. As an example we have worked
with adults with autism who wanted us to assist them with difficulties their child
(without a diagnosis) was having at school. It is of course possible that their child’s
difficulties and their attempts to assist them may have been influenced by the
parents’ “autism” but in this chapter we want to focus on what they may have in
common with other psychological conditions as well as the specific contribution
of their autism.
The term autistic adult is also in reality hard to pin down, encompassing a wide
range of people with disparate needs and experiences. On the one hand, adults
may have multiple and complex needs and be unable to live independently; on
the other hand, adults may be living and working independently with specific
issues regarding socio-​communicative interaction (Crane et al., 2019; Hollocks
et al., 2019; Lever & Geurts, 2016; Strang et al., 2012). Adults with autism may
be teenagers who are living in their family home, students, parents themselves,
or older people living in the community or residential settings. It is commonly
overlooked that autistic children will inevitably become autistic adults and that
their life cycle, as with most people, involves dynamic and recursive interaction
and interdependence with families and communities. It is also worth considering
the gray area around individuals with a diagnosis and other family members
perceived to have high autistic traits. In many families the person with the diag-
nosis also has siblings, parents, or grandparents who share many of their qualities,
challenges, and beliefs. For all of these reasons our own approach to working with
adults with a diagnosis of autism has been to work with the family and commu-
nity system encompassing children, adults, those with a diagnosis, their families,
teachers, and important others. For example, we have worked with autistic parents,
their autistic children, their nonautistic siblings, and their child’s teachers and
family friends. In order to achieve this model of working, we developed a systemic
attachment-​based intervention called SAFE (systemic autism-​related family ena-
bling) and a sister intervention called SAFE with Schools. SAFE is a manualized
flexible approach that addresses the unique challenges presented and builds on
the strengths and interests characterizing a particular system (McKenzie et al.,
2020; Vassallo et al., in press).
20

20 P sychological T herapies for A dults W ith A utism

Systemic Therapy

One of the core premises of a systemic approach is that problems and difficulties
are relational rather than simply residing “within” individuals. This is based on
the view that we are mutually influencing each other and problems, and solutions
to these problems evolve from the flux of our interactions with each other. In its
most radical version a systemic approach holds a formulation of problems, such as
depression, anxiety, eating disorders, self-​harming, and psychosis, as resulting not
from some core genetically inherited abnormality but from adverse events in our
lives and relationships (Dallos & Draper, 2015; Crittenden et al., 2014). Systemic
approaches typically involve sessions in which all relevant family members are
invited to attend to discuss their different views of the difficulties and to reflect on
what they have tried to do to resolve the problems. A common feature of sessions
is to validate and support the people’s intentions and to help them become emo-
tionally calmer in order to be able to explore in detail examples of problematic
episodes in their lives. They can then attempt some different ways of acting with
each other and consider different ways of understanding their difficulties.

Geoff

As an example, a family may be caught in an unhelpful cycle where the parents

try to offer guidance and support to their young adult son with autism, but
he experiences it as belittling and being treated as a child (see Figure 3-​1).
Consequently, he becomes irritated and at times explodes in anger, which leaves
the parents both fearful as well as frustrated and feeling they are failing.
In this pattern it may also be the case that the mother Jean tries to “keep the
peace” between Geoff and his father Pete who wants to protect the family from
Geoff ’s temper and enforce some rules and discipline regarding his behavior. This
can lead to an escalating pattern, including Jean and Pete coming to disagree about
the best way to manage Geoff. In the family discussions it may emerge that both

Father Pete
Geoff (19) autism

Wants to be Concerned that

treated as an adult Geoff will be ok

Mother Jean

Tries to “keep the peace”

Figure 3-​1 Family Triangle—​Keeping the Peace
21

Systemic Therapy21

parents are trying to help and prepare Geoff for the outside world which they fear
will be difficult for him. It was suggested that the parents retreat a little and allow
Geoff to seek support from them when he decides to. Geoff was also invited to un-
derstand that his parents were acting out of concern and will welcome assurances
from him that he is managing. Visually depicting this process can be helpful to
make the processes more concrete, and gradually this can be used to help elabo-
rate how everyone thinks and what their intentions and feelings are.
Evidence in psychiatry increasingly supports the idea that many severe
conditions are influenced by events that have occurred in people’s lives that have
led to traumatic states (Timimi et al., 2011; Van Der Kolk, 2015). More broadly,
systemic approaches not only consider the family system, but that of the profes-
sional systems, such as mental health, education, and social care services in the
developmental trajectory of problems.
In our view, systemic ideas are of particular relevance to the field of autism for
a number of reason: adults with autism live within families and communities and
many report substantial battles in gaining the support they need in education and
social care (Camm-​Crosbie et al., 2019). Many adults with autism also recount
adverse life events, stress, and mental health problems (Russell et al., 2016) expe-
rienced by themselves and their family members impacting their ability to nego-
tiate life’s challenges effectively. Consequently, adults with a diagnosis of autism
may suffer a range of challenges: the nature of their condition of autism, adverse
life events, constraints on the ability of families to cope, and difficulties accessing
relevant support. A number of systemic approaches have been developed for
assisting families, but these have mainly focused on addressing problems with
children (Lewis, 2017; Neely et al., 2012; Smock et al., 2016; Solomon & Chung,
2012; Stoddart, 1999; Parker & Moleni, 2017). Mostly these approaches have con-
centrated on looking at behavioral sequences, as in the previous example, and
on recognizing examples of successes and building on these. Monteiro (2016)
has develop a systemic approach which explores the dominant narratives that
families hold and, for example, offers the idea of individual “brain styles” as a way
of thinking about autism in a more fluid and less diagnostic way. As in the pre-
vious example, such approaches suggest that Geoff ’s autism need not imply that
he will “always” be dependent upon them.

Martin

As a further example, Martin was a young man in his 30s who had been diagnosed
with autism at the age of 15. He had also experienced considerable anxieties
and fears, and as an adult developed an eating disorder which had now become
life-​threatening. This condition may have been related to fears of contamina-
tion connected with his autism, but it had become the primary concern in his
family rather than the autism, which had come to be seen by them as less relevant.
His parents had both experienced traumatic events in their childhoods and also
worked in highly demanding care services resulting in secondary traumatization.
2

22 P sychological T herapies for A dults W ith A utism

Moreover, Martin was born at a time when his father was suffering with cancer.
Unfortunately, Martin and his family fell through the gaps in services available
because until recently his eating disorder had not been severe enough to war-
rant input from psychiatric services, and there were no appropriate services avail-
able for adults with a diagnosis of autism. Most relevant to this chapter, there
were no services to provide family support/​therapy to assist his family, including
his brothers who were desperate with anxiety and experiencing a sense of help-
lessness in how to help him. His parents had worked extremely hard to support
Martin and had stretched themselves financially to provide a house for him and
his brother.
This is not an uncommon scenario where families take on a long-​term caring
role for an adult child, but it is unfortunate that their dedication is often not
supported by services in terms of recognizing their needs as well as that of the
diagnosed adult. Consequently, limited services may be available in terms of sup-
port for the adult child in a family but not for the family as a whole. This gap can
also be seen to apply more broadly for other adult mental health services (Carr,
2009; Dallos & Draper, 2015).

SAFE

We have developed an approach (McKenzie et al., in press) for families with a

child or young adult diagnosed with autism based on attachment narrative
therapy (ANT; Dallos, 2006; Dallos & Vetere, 2009), which is a systemic therapy
model integrating ideas from attachment theory and aspects of narrative therapy
and theory. The core of this model is the idea that the characteristic patterns
of interactions that families display are shaped by the attachment experiences
that the parents (carers) bring with them from their own childhoods. Systemic
therapies focus on identifying current relational dynamics or patterns that are
seen to perpetuate difficulties.
SAFE is a manualized implementation of ANT and starts with a multi-​family
session where parents are invited to act as consultants to each other and share
their experiences of autism, including the challenges they have faced and the
coping strategies they have evolved. The aim is to offer validation and foster a
sense of safety and support to share their difficulties and successes. It has been
developed to be compatible with the needs of families with a diagnosis of autism
both in its content and focus but also in the structure. We explain that the focus
is not simply or predominantly on the person within the family presenting with
autistic, but the effects on all of them. As an example, the siblings may feel their
needs are being ignored and that their support and the sacrifices they have made
are unappreciated. SAFE is a flexible approach with a range of activities, which
can be adapted for use with adults, young people, and children within the family.
The sessions are clearly detailed so that the content, timing, and duration of the
sessions and activities are clear and expected. There is also an emphasis on visual
and action-​based techniques and clear information about the verbal content to fit
23

Systemic Therapy23

with what is known about the autism phenotype regarding the need for clarity and
predictability. There is also an emphasis on continually monitoring the intensity
and emotional demands of the session such that feedback is taken at the end and
clear plans are stated at the start of each session.
SAFE is a flexible approach. Although we had initially developed it with
a child focus, SAFE also addresses all members of the family, including the
adults. It includes a range of activities adapted from systemic therapy (Dallos
& Draper, 2015), for example mapping genograms, exploring family transitions
and perceptions using buttons, tracking repetitive patterns of interactions or
circularities, exploring attachment relationships and needs, externalizing using
materials to represent the autism and other problems, and exploring areas of
special interest. Sculpting with coins consists of inviting family members to rep-
resent their relationships with each other by choosing different buttons to rep-
resent each of them and placing the buttons spatially to represent closeness and
conflicts. This can elicit mutual understanding about the different ways they see
their relationships and also consideration of possible changes. Externalizing is
another visual technique where families are invited to consider the problem as
an external force that has come into their lives. They are invited to draw or make
the problem out of clay, give it a name, and consider how it has come to control
them and how they may be able to work together to reduce its influence. The aim
is to avoid blame and holding each other responsible for the problems and instead
focus on how they can work together to resolve their difficulties.
SAFE starts with adults completing the parent development interview (Slade
et al., 2004) followed by two 3-​hour multi-​family sessions and three 3-​hour
single-​family sessions. Prior to the therapy the parents complete the parent devel-
opment interview with the therapists which explores their attachment relation-
ship with their child and also their own experiences of how they were parented.
This provides a platform of shared understanding of their backgrounds and an
indication of adverse events and traumatic experiences that may be an influ-
ence on their parenting. SAFE was also adapted to address issues arising between
families and educational settings (Vassallo et al., in press) by bringing teachers
and adults within the family together in two full-​day group sessions to build posi-
tive relationships and mutual understanding and to effect positive change.
SAFE does not focus specifically on individuals or the symptoms of autism, but
on the issues that a relational system views as particularly pressing. For example,
emotional aggressive outbursts known as meltdowns or emotional and social
withdrawal (shutdowns) trouble many families and education providers. In such
cases, a core starting point for assisting the families is to explore in detail these
patterns and how the parents’ own childhood experiences and attachments were
influencing how they respond. For example, one mother described:

When my son starts screaming it triggers those feelings of stress that I had
when my mother used to scream (at me) . . . that kind of brings it all back,
it’s sort of like triggering, which is why I think that I find it particularly
stressful . . . there you know there’s a link between the past and the present.
24

24 P sychological T herapies for A dults W ith A utism

SAFE also seeks to build upon the strengths and preferences that members of the
system may have in order to build confidence, coping, and a sense of empower-
ment. The model strives for collaboration where all concerned are seen as experts
in finding solutions and moving forward. For example, discussions may center on
areas of special interest and this may be a vehicle for exploring relationships and
new avenues of support and understanding.
It has occasionally been surprising for us to find that activities such as exploring
areas of special interest, where we ask the children in the family to give a brief
presentation to us and their family about something that fascinates them, have
been of equal fascination for the parents. One parent who described himself as
having autistic traits also talked about his interests. He proceeded to tell us in de-
tail about his interest in astrophysics and, like the children, found it a very positive
experience to have an attentive audience rather than feeling it was a burden for
his family to hear about his favored topic. Sculpting with coins has also been ex-
perienced as helpful for all members of the family. For example, one mother was
tearful with joy to see that her children described the period before and after the
parents’ divorce as one where the buttons representing the children were placed
closer by them to their mother after the divorce than before. This is consistent
with the practice of systemic therapy in that positive changes in mental health are
seen to occur for all family members and can involve positive, mutually beneficial
relational cycles so that as the parents feel better, the children feel more secure and
the parents are more emotionally available, which in turn leads to further positive
changes (see Figure 3-​2):
The SAFE program was supported financially by research funding enabling us
to work with more than 50 families over the last decade. In this time, we have
worked with diverse families, teachers, educational managers, and special edu-
cational needs coordinators. The families have included parents, grandparents,
adults, and children with and without a diagnosis of autism or perceived autistic
traits. Almost all have shared with us substantial challenges, psychological dis-
tress, and adverse life events and traumas. We have also been privileged to share
the talents, joys, strengths, and dedication of many families. Our research suggests
that working systemically with these families has elicited positive change and that

Feel appreciated by the children

Less anxious about failure and blame

PARENTS CHILDREN

See parents as more available,

Less stressed, less worried about their parents
Figure 3-​2 Benign Cycle of Positive Change in Families
25

Systemic Therapy25

families and communities experience SAFE as helpful and at times life changing,
as one mother expressed (McKenzie et al., in press):

I have already found these sessions so helpful they have helped me under-
stand what I can do differently to help Joshua, myself and the family and
given me confidence to make decisions and changes for the better.

In many cases, families reported to us that they had never been asked to share
their life events, interests, and challenges before and that this was a very powerful
experience for them. In the following example we describe some key aspects of
working with David’s family (see Figure 3-​3).

David and His Family

David considered himself to have high autistic traits and to share many quali-
ties with his eldest son. David’s family consisted of himself, his wife, and their
two sons: Malcom, who had a diagnosis of autism, and his younger brother. The
family volunteered to take part in the SAFE program in order to obtain help in
managing Malcom’s behavior. He was intellectually extremely able, but they had
become fearful of his “meltdowns,” which were especially concerning for David.
In working with the family we quickly discovered that when described in detail
the “meltdowns” appeared to be relatively mild, but David experienced himself as
reacting with considerable anxiety and also described that he was unable to assist
his wife Jenny to offer support in setting some rules for Malcom. In David’s terms,
he felt he was extremely soft on Malcom and let him “get away with anything.”
We became curious about why David experienced such anxiety at any form of
confrontation with his son. He described a childhood which featured a high level
of danger in that his father was an alcoholic and regularly physically attacked his
mother and himself and his siblings. He had memories of sleeping with a knife
under his pillow, fearing that his father would come and attack them hoping that he
could protect his sisters. He had never spoken to anyone about these experiences

violent/alcoholic

David (42) Jenny (51)

Malcom (15) autism Chris (11)

Figure 3-​3 David and His Family

26

26 P sychological T herapies for A dults W ith A utism

and commented that on reflection he realized that he was so determined to be a

different, better, and less frightening father than his own that the “corrective pen-
dulum” had maybe swung too far. Exploring such “corrective” scripts revealed
this alternative narrative to the family, in contrast to the previous belief that it was
because of his own autistic traits that he could not manage difficult relationships.
Though the focus of the therapy had not been on David’s autistic traits, he stated
that he found the family work extremely helpful for himself and the children and
that it had also improved his relationship with his wife. In addition, they realized
that their other son Chris had been somewhat ignored, and they developed a plan
in which they were less organized by their anxieties about David’s meltdowns and
needs. For example, they decided that they would alternate between Malcom and
Chris choosing family outings. Previously they were concerned that Malcom’s
wishes should always be accommodated to avoid meltdowns. Through discussion
of ways forward with the whole family they were able to overcome their worries
that Malcom would react badly to this change and reported that Malcom enjoyed
the days where his brother led the way and found he was calmer not being the
focus of the family’s anxieties.

SAFE With Schools (SwiS)

We have adapted the SAFE approach to include a focus on how the family and
school systems interact. Sometimes this can be problematic with both sides feeling
blamed and criticized by the other. Using many of the formats in SAFE, SwiS
invites parent-​teacher pairs (where they share a child with an autism spectrum
disorder diagnosis) to meet over 2 days in groups of six parent-​teacher pairs. The
parents and teachers start by describing their typical day with the child and share
difficulties and solutions, which is often revealing for both of them since they are
not always aware of similarities and differences in the two contexts. Again there
is a focus on looking at specific problems, such as meltdowns, and also the needs
of parents and teachers in meeting the challenges. There are also opportunities to
share successes and positive aspects and for both to feel reassurance of not being
blamed or criticized by the other.
As with SAFE, although there is a child focus we have found that the groups are
experienced as helpful for the parents who may have a diagnosis or describe them-
selves as having autistic traits (Vassallo et al., in press). An example of our work
with a mother, Sonia, illustrates some features of this approach (see Figure 3-​4).

Sonia and Her Family

In working with Sonia’s family, we brought her and the school together to explore
how relationships could be improved and the family, teacher, and special educa-
tional needs coordinator (SENCO) could work together.
27

Systemic Therapy27

Sonia (38) autism Hattie (SENCO)

Sani autism (8) Tia (10) Joe (2)

Figure 3-​4 Infantilising Parent –​Child Cycle

Sonia had a diagnosis of autism, as did one of her daughters, Sani. The other
daughter, Tia, had behavior problems, and Sonia also had a toddler to take care
of. Her situation was one of instability at home, being in an overcrowded tempo-
rary housing situation with three children. Sonia had a difficult childhood being
a carer for her alcoholic mother, and in adulthood she had experienced chronic
unemployment, substance abuse, and little in terms of a support network. She felt
that she was often misunderstood and received a diagnosis of autism in young
adulthood. Sonia sought support for her child with behavior problems and felt
that Sani was largely unproblematic, as she and Sani understood each other well.
Sonia’s relationship with the school had broken down, and her behavior
and demands meant she was perceived by the school as being a trouble maker.
Sonia felt she wasn’t listened to and the school did not know how to support her
daughters:

I didn’t have that personal connection with Tia’s teacher, and, and from that
point onwards I was like, no, this is not working for me, this whole “no con-
versation, cold shoulder, and out the door” does not work for me as a parent.

She reported that the SwiS sessions particularly helped her in being able to “slow
down” and being able to unpack situations rather than getting frustrated with the
outcome. She said her brain worked at a “million miles an hour” so she struggled
to see where and why things were going wrong, seeing just that they were going
wrong. SwiS sessions provided a calm forum to explore unhelpful circularities
reflected in her own worries and difficult life events and to discuss her hopes and
insights into her children’s challenges with the teacher and SENCO. This process
made her feel heard by the school and recognized as a parent with something
positive to contribute. The experience was powerful for her and her family as she
felt the school would subsequently take her seriously and act on her knowledge
of her children. Prior to that she felt that she was judged, often as an unfit parent.
Sitting with the teacher and talking alleviated some of that feeling and allowed
her to work collaboratively with the school to plan a more supportive context for
her children. The school was able to understand that she was a caring parent who
28

28 P sychological T herapies for A dults W ith A utism

wished to overcome substantial difficulties and came to appreciate her knowledge

of her own life and that of her children, leading to improved channels of commu-
nication and support for the children.

Discussion and Conclusion

We have outlined an approach to working with families that we have applied in

a variety of clinical settings and presentations. While we recognize the specific
needs of adults with a diagnosis of autism, we have also outlined how we consider
that they also have much in common with adults living in families presenting
with other forms of clinical profiles. In some cases the problems they face are con-
cerned with specific aspects of autism, but as we have suggested in this chapter
frequently there are broader issues which have to do with the web of relationships
in which they live. Not infrequently there are problems “elsewhere” in their re-
lational systems that are not specific to, or caused by, the autism. A systemic ap-
proach can help to assist all of the people involved in a family system, which in
turn can be of great benefit to the quality of life of the adult with a diagnosis.
Through these brief snippets of people’s stories we hope to convey the impor-
tance and power of using a systemic approach that also incorporates aspects of at-
tachment theory. Sonia’s children had received interventions at school which were
unsupported at home and perceived to be unhelpful. Consequently they were un-
successful and inappropriate. Similarly limited support for David’s son had served
to make the family feel anxious and judged for not being able to manage his beha-
vior. They were left helpless in repeated unsuccessful attempts to accommodate his
every wish at the expense of their other child. In both cases the substantial needs
of the parents were ignored or negatively construed. We have found that adults,
young people, and children with a diagnosis of autism benefit enormously, often
in surprising ways, from being listened to, supported to find their own solutions,
and facilitated to being better understood and connected with important others
in their family and community.
We have been granted permission to employ verbatim quotations from our
participants in the SAFE and SAFE with Schools research programs.

REFERENCES

Camm-​Crosbie, L., Bradley, L., Shaw, R., Baron-​Cohen, S., & Cassidy, S. (2019). “People
like me don’t get support”: Autistic adults’ experiences of support and treatment
for mental health difficulties, self-​injury and suicidality. Autism, 23(6), 1431–​1441.
Carr, A. (2009). The effectiveness of family therapy and systemic interventions for adult-​
focused problems. Journal of Family Therapy, 31(1), 46–​74.
Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). “Something needs
to change”: Mental health experiences of young autistic adults in England. Autism,
23(2), 477–​493.
29

Systemic Therapy29

Crittenden, P. M., Dallos, R., Landini, A., & Kozlowska, K. (2014). Attachment and sys-
temic family therapy. McGraw-​Hill Education.
Dallos, R. (2006). Attachment narrative therapy. McGraw-​Hill Education.
Dallos, R., & Draper, R. (2015). An introduction to family therapy: Systemic theory and
practice (4th ed.). McGraw-​Hill Education.
Dallos, R., & Vetere, A. (2009). Systemic therapy and attachment narratives: Applications
in a range of clinical settings. Routledge.
Department of Health. (2010). Fulfilling and rewarding lives: The strategy for adults with
autism in England. The Stationery Office, London.
Hollocks, M. J., Lerh, J. W., Magiati, I., Meiser-​Stedman, R., & Brugha, T. S. (2019).
Anxiety and depression in adults with autism spectrum disorder: A systematic re-
view and meta-​analysis. Psychological medicine, 49(4), 559–​572.
Lever, A. G., & Geurts, H. M. (2016). Psychiatric co-​occurring symptoms and disorders
in young, middle-​aged, and older adults with autism spectrum disorder. Journal of
Autism and Developmental Disorders, 46(6), 1916–​1930.
Mannion, A., & Leader, G. (2013). Comorbidity in autism spectrum disorder: A litera-
ture review. Research in Autism Spectrum Disorders, 7(12), 1595–​1616.
McCarthy, J., Chaplin, E., & Underwood, L. (2015). An English perspective on policy for
adults with autism. Advances in Autism, 1(2), 61–​65.
McKenzie, R., Dallos, R., Stedmon, J., Hancocks, H., Vickery, P. J., Barton, A., . . . Ewings,
P. (2020). SAFE, a new therapeutic intervention for families of children with au-
tism: a randomised controlled feasibility trial. BMJ Open, 10(12), e038411.
Monteiro, M. J. (2016). Family therapy and the autism spectrum: Autism conversations in
narrative practice. Routledge.
National Autistic Society. (2018). Autism facts and history. http://​www.aut​ism.org.uk/​
about/​what-​is/​myths-​fac​tsst​ats.aspx. Accessed 1 Apr 2018.
NICE: National Institute for Health and Clinical Excellence. Service user experience in
adult mental health: improving the experience of care for people using adult NHS
mental health services. (Clinical guideline 136.) 2011. http://​guida​nce.nice.org.uk/​
CG136.
Neely, J., Amatea, E. S., Echevarria Doan, S., & Tannen, T. (2012). Working with families
living with autism: Potential contributions of marriage and family therapists. Journal
of Marital and Family Therapy, 38, 211–​226.
NHS England. (2017). Next Steps on the NHS Five Year Forward View. NHSE, London.
Parker, M. L., & Molteni, J. (2017). Structural family therapy and autism spectrum dis-
order: Bridging the disciplinary divide. American Journal of Family Therapy, 45(3),
135–​148.
Russell, A. J., Murphy, C. M., Wilson, E., Gillan, N., Brown, C., Robertson, D. M., Craig,
M. C., Deeley, Q., Zinkstok, J., Johnston, K., McAlonan, G. M., Spain, D., & Murphy,
D. G. (2016). The mental health of individuals referred for assessment of autism
spectrum disorder in adulthood: a clinic report. Autism, 20(5), 623–​627.
Slade, A., Aber, J. L., Bresgi, I., Berger, B., & Kaplan, M. (2004). The parent development
interview—​revised [Unpublished protocol]. The City University of New York.
Smock Jordan, S., & Turns, B. (2016). Utilizing solution-​focused brief therapy with
families living with autism spectrum disorder. Journal of Family Psychotherapy,
27(3), 155–​170.
30

30 P sychological T herapies for A dults W ith A utism

Solomon, A. H., & Chung, B. (2012). Understanding autism: How family therapists can
support parents of children with autism spectrum disorders. Family Process, 51(2),
250–​264.
Stoddart, K. P. (1999). Adolescents with Asperger syndrome: Three case studies of indi-
vidual and family therapy. Autism, 3(3), 255–​271.
Strang, J., Kenworthy, L., Daniolos, P., Case, L., Wills, M., Martin, A., & Wallace, G.
(2012). Depression and anxiety symptoms in children and adolescents with autism
spectrum disorders without intellectual disability. Research in Autism Spectrum
Disorders, 6(1), 406–​412.
Timimi, S., Gardner, N., & McCabe, B. (2011). The myth of autism: Medicalising men’s
and boys’ social and emotional competence. Palgrave Macmillan.
Van der Kolk, B. A. (2015). The body keeps the score: Brain, mind, and body in the healing
of trauma. Penguin Books.
Vassallo, T., Dallos, R., & McKenzie, R. (in press). Parent and teacher understandings
of the needs of autistic children and the processes of communication between the
home and school contexts. Autism-​Open Access.
Warner, G., Parr, J. R., & Cusack, J. (2019). Workshop report: Establishing priority re-
search areas to improve the physical health and well-​being of autistic adults and
older people. Autism in Adulthood, 1(1), 20–​26.
31

Easing the Transition to Adulthood

BRIANNE TOMASZEWSKI, LAURA GROFER KLINGER,
GLENNA OSBORNE, AND CLAIRE BRITO KLEIN ■

KEY CONSIDERATIONS

• Despite increased funding for transition to adulthood services,

traditional vocational rehabilitation supports have not improved
employment and postsecondary outcomes, even for autistic youth with
average or higher intellectual skills.
• There is emerging evidence that targeted interventions focused on
autism-​specific challenges (e.g., executive function, social skills,
emotion regulation, adaptive behavior, self-​determination) may ease the
transition to adulthood.
• Transition programs have focused on supporting caregivers, creating
transition/​goal attainment plans to support self-​determination, or
teaching specific strategies to autistic youth. Few programs combine
these three types of transition supports. Transition services may be most
effective when provided in community settings where autistic youth
are likely to seek support (e.g., community colleges) and when they
generalize knowledge to everyday life.

OVER VIEW OF THE PSYCHOLOGICAL APPROACH

History of Transition Services

The increase in the rates of autistic individuals (based on autistic stakeholder

preferences, we use identify-​ first [autistic] language; Bottema-​ Beutel et al.,
2020) has been especially dramatic for those with average or higher intellectual
abilities worldwide (Chiarotti & Venerosi, 2020), with current estimates in the
United States that only 33% of autistic individuals have an intellectual disability
32

32 P sychological T herapies for A dults W ith A utism

(Maenner et al., 2020). This is a significant change from the previous generation of
adults, when the rate of intellectual disability was estimated to be 75–​90%. Given
this change in the demographics of autistic transition-​aged individuals, there is a
growing emphasis on creating evidence-​based interventions to support positive
adult outcomes, particularly for autistic individuals who have average (or higher)
intellectual abilities, who historically have not received transition services.
Currently, autistic young adults with average (or higher) intelligence struggle
to transition successfully from high school to postsecondary education and em-
ployment settings. Taylor and Seltzer (2011) found that autistic young adults with
average intelligence were three times more likely to have no daytime activities
after completing high school than autistic individuals with co-​occurring intellec-
tual disability. For autistic adults who begin a postsecondary education program
or find employment, there are frequent disruptions, job loss, or college expulsion
(Flower et al., 2020; Taylor & DaWalt, 2017; Taylor et al., 2015). Newman et al.
(2011) reported that only 39% of autistic students who begin a postsecondary edu-
cation program complete that program, compared to nearly 60% for neurotypical
students.
Despite these poor adult outcomes, a decline in services begins in high school
for autistic individuals without intellectual disability that persists into adult-
hood (Laxman et al., 2019). Only 18% of autistic individuals without intellec-
tual disability are reported to receive employment services after leaving school,
compared to 86% of those with intellectual disability (Taylor & Seltzer, 2011).
However, merely increasing access to services does not seem to be enough to im-
prove outcomes for autistic individuals (Alverson & Yamamoto, 2017; Burgess &
Cimera, 2014). From 2003–​2012 there was a 571% increase in caseloads of au-
tistic individuals receiving vocational rehabilitation (VR) services. However, this
increase in services did not bring an increase in successful employment (i.e., case
closures), with only one third of autistic adults achieving successful employment
(Alverson & Yamamoto, 2018).
To meet these growing demands for successful transition services, the United
States Workforce Innovation and Opportunity Act (WIOA; 2014) mandated that
states spend 15% of federal VR funding on Pre-​Employment Transition Services
(Pre-​ETS) for 16-​to 21-​year-​old individuals with a disability. Pre-​ETS focuses
on transitioning from school to postsecondary education or employment and is
considered the first vocational rehabilitation service for high school students and
those exiting high school. Pre-​ETS includes work-​based learning experiences,
job exploration counseling, higher education counseling, workplace readiness
training, and self-​advocacy counseling (WIOA, 2014; see Table 4-​1 for definitions
of these activities). Activities similar to Pre-​ETS have been used in other coun-
tries (see the work of Hatfield, Murray, et al., 2017, in Australia). To date, the
majority of transition services have focused on providing program supports for
youth with intellectual disabilities (e.g., Project SEARCH; see c­hapter 6) pro-
viding work-​based learning opportunities for high school students to support
a successful transition from school to work. Fewer programs have targeted au-
tistic youth who have average (or higher) intellectual abilities, with no large-​scale
3

Easing the Transition to Adulthood33

Table 4-​1 Pre-​Employment Transition Services Activities Defined Under

the Workforce Innovation and Opportunity Act
Pre-​ETS Category Activities Examples
Job Exploration Identifying vocational interests and career pathways;
Counseling providing information on occupations, local information on
the labor market, occupations that match interests, andin-​
demand occupations.
Work-​Based Learning Job training, interviewing, work-​site tour, job shadowing,
Experiences or mentoring opportunities and work experiences such as
paid and unpaid internships, apprenticeships, short-​term
employment, fellowships, or on-​the-​job training.
Higher Education Information on the college application and admission
Counseling processes, completing the Free Application for Federal Student
Aid (FAFSA), college course offerings, career options, the types
of academic and occupational training needed to succeed in
the workplace, postsecondary opportunities associated with
career fields or pathways, and resources that may be used to
support individual student success in education and training.
Workplace Readiness Programming to develop social skills and independent living,
Training such as communication and interpersonal skills, financial
literacy, orientation and mobility skills, job-​seeking skills,
understanding employer expectations for punctuality and
performance, as well as other “soft” skills necessary for
employment.
Self-​Advocacy Instruction on rights, responsibilities, and how to request
Counseling accommodations or services and supports needed during the
transition from secondary to postsecondary education and
employment.

randomized controlled trials (RCTs) conducted to date for this group. Given that
employment-​based transition services for youth with intellectual disabilities are
discussed elsewhere in this book (see ­chapter 6), the focus of this review will be
on transition programs targeting autistic individuals who have average or higher
intellectual abilities.

AUTISM-​S PECIFIC CHALLENGES TARGETED

BY TRANSITION SER VICES

Autistic adolescents often experience a combination of learning challenges (e.g.,

executive function, theory of mind, narrow focus of attention), with 72% of au-
tistic adolescents having two or more of these challenges (Brunsdon et al., 2014).
Thus, transition to adulthood programs often target one or more of these cogni-
tive differences or address challenges with everyday life skills, including social
34

34 P sychological T herapies for A dults W ith A utism

skills, daily living skills, and self-​determination that may result from these cogni-
tive differences.

Executive Function

Autistic adolescents and adults have challenges with executive functioning (EF),
including difficulties with planning, time management, task performance, and
flexible thinking (Ambery et al., 2006; Wallace et al., 2016). Impaired EF has
been linked to problems in areas that impact health, well-​being, and indepen-
dence in autism, including increased psychiatric symptoms (Lawson et al., 2015;
Wallace et al., 2016), quality of life (de Vries & Geurts, 2015), academic achieve-
ment (Pellicano et al., 2017; St. John et al., 2018), and adaptive behavior (Kenny
et al., 2019; Pugliese et al., 2016; Wallace et al., 2016). These EF impairments often
negatively impact success in postsecondary education and employment settings
(Hendricks, 2010; McGurk & Mueser, 2003, 2004).

Social Skills

Autistic adolescents and young adults often have difficulties with the social
demands of college and employment settings (Hendricks, 2010; Hillier et al.,
2018; Sperry & Mesibov, 2005). These social difficulties are associated with un-
derlying cognitive challenges including difficulty with understanding other
people’s perspectives (i.e., theory of mind; Jones et al., 2018). Autistic transition-​
aged youth without intellectual disability often appear to be less socially impaired
than they are and must simultaneously operate in an environment of more com-
plex social relationships and greater social expectations. This combination fre-
quently leads to awkward, intrusive, or offensive social interactions (Bauminger
et al., 2003; Laugeson & Ellingsen, 2014; Sterling et al., 2008). Difficulties under-
standing colleagues’ perspectives can lead to social “faux pas” in work or college
settings and difficulty recognizing these “faux pas.”

Emotion Regulation

Autistic individuals often experience emotional dysregulation, including co-​

occurring anxiety and depression, with co-​occurring anxiety disorders present in
42% of autistic adults and comorbid depression present in 37% of autistic adults
(Hollocks et al., 2019; Kent & Simonoff, 2017). More significant anxiety and
depression levels are seen in autistic individuals who have average intelligence
(Hallett et al., 2013; Strang et al., 2012). Autistic adults regularly report more sig-
nificant subjective stress and diminished ability to cope with stressors, relative to
neurotypical adults (Bishop-​Fitzpatrick et al., 2015). Autistic adults experience
exceptionally high levels of stress when there are unexpected changes to plans or
35

Easing the Transition to Adulthood35

routines (Hirvikoski & Blomqvist, 2015), resulting in autistic employees having

difficulty coping with criticism and a tendency to dwell on negative experiences
(Hillier et al., 2007).

Adaptive Behavior

Adaptive behavior involves everyday skills such as communication, daily living

skills, and socialization. Higher adaptive behavior is associated with positive
outcomes including employment, independent living, and quality of life during
adulthood (Bishop-​Fitzpatrick et al., 2016; Farley et al., 2009; Taylor & Mailick,
2014). At a time when adaptive behavior typically shows significant gains, there
is evidence of a plateau of adaptive behavior skills in autistic transition-​aged
youth (Meyer et al., 2018; Smith et al., 2012). Autistic adolescents have significant
discrepancies between their intellectual ability and adaptive behavior with almost
a three standard deviation difference between IQ and daily living skills for those
with above average intellectual abilities (Duncan & Bishop, 2015).

Self-​Determination

Self-​determination refers to a set of beliefs, knowledge, and skills (e.g., self-​

awareness, decision making, goal setting) that enable someone to engage in self-​
directed behavior and pursue their own goals and desires in areas a person feels is
important to them (Wehmeyer, 1998). Self-​determination theory emphasizes the
importance of providing individuals with the opportunity and support to practice
self-​determined behaviors in their environment. Research on self-​determination
indicates that autistic adolescents have poorer self-​determination abilities than
those with intellectual disability or learning disabilities and that self-​determina-
tion is positively associated with quality of life (Kim, 2019; White et al., 2018).
Caregivers rated autistic young adults as having lower capacity than opportunities
(Cheak-​Zamora et al., 2020; Tomaszewski et al., 2020) in a combined sample of
autistic young adults, with and without intellectual disability. Tomaszewski and
colleagues (2020) found that in their self-​reports, adolescents and young adults
reported higher levels of capacity than both caregivers and educators.

SUMMARY OF EMPIRICAL EVIDENCE

Despite a growing consensus on the topics that should be included in transition

to adulthood interventions, there are no large-​scale RCTs examining the effec-
tiveness of transition intervention programs for autistic youth who have average
intellectual skills. However, there have been some promising pilot studies and
small RCTs, all in the United States with the exception of one study in Australia,
suggesting that interventions can ease the transition from school to adulthood
36

36 P sychological T herapies for A dults W ith A utism

for autistic youth. To date, interventions have either directly targeted caregivers,
goal planning with both caregivers and students, or targeted student specific skill
development.

Transition Intervention Programs

Caregiver-​Focused Interventions
These interventions typically focus on supporting parent understanding of adult
services and effective advocacy for their autistic transition-​aged youth. These
interventions have included transition-​aged youth across a range of intellectual
abilities.
Transitioning Together (DaWalt et al., 2018). Transitioning Together is a multi-​
family group program for autistic high school students and their parents focused
on the transition from high school to college. In a preliminary waitlist control
RCT, the intervention produced increased parent well-​being and improved ado-
lescent social interactions. A preliminary pilot study also demonstrated the feasi-
bility of cultural adaptation of Transitioning Together for Latino families: Juntos
en la Transicion (Kuhn et al., 2020).
Volunteer Advocacy Program-​Transition (VAP-​T; Taylor et al., 2017). Focused
on adult service system navigation and disability services advocacy, a waitlist con-
trol RCT of VAP-​T found that parents receiving the intervention showed increase
in empowerment and comfort advocating on behalf of their child, as well as more
knowledge about the adult service system.

Goal-​Planning Interventions

These interventions focus on collaborating with caregivers and students to de-

velop plans to leave the secondary education setting and include goal setting for a
successful transition to adulthood.
Collaborative Model for Promoting Competence and Success for Transition
(COMPASS-​T; Ruble et al., 2018, Ruble et al., 2019). COMPASS-​T is a consultation
intervention that aligns the individual, family, and school around Individualized
Education Plan (IEP) goal attainment. In COMPASS-​T, a consultant works with
the teacher, parent, and student (as much as possible) to link IEP social, com-
munication, and work goals to postsecondary goals chosen by the student and
parent, identify the student’s personal and environmental challenges, and collab-
oratively develop a plan. In an RCT, COMPASS-​T was successfully implemented
with autistic transition-​age youth with a large effect size for transition IEP goal
attainment compared to the control group (Ruble et al., 2018).
Better OutcOmes & Successful Transitions for Autism Spectrum Disorder
(BOOST-​A; Hatfield, Falkmer, et al., 2017; Hatfield, Murray, et al., 2017). BOOST-​
A is an online program based in Australia to help initiate the planning process and
empower students to develop clear plans for themselves after leaving the secondary
37

Easing the Transition to Adulthood37

education setting. The BOOST-​A program consists of four modules: students

identify their strengths and interests, identify their team of people supporting
their transition, meet with their team to review career options and set goals, and
continue these team meetings once per school term to discuss goal progress.
A year-​long, quasi-​RCT of BOOST-​A showed preliminary evidence for self-​de-
termination outcomes and career exploration outcomes in adolescents (Hatfield,
Falkmer, et al., 2017).

Student-​Focused Interventions

There is a growing evidence base for transition and support programs for high
school and college students focused on supporting autism-​specific challenges
with a focus on EF, social skills, emotion regulation, daily living skills, and self-​
determination skills.
Stepped Transition in Education Program for Students with Autism Spectrum
Disorder (STEPS; White et al., 2019). Further described in ­chapter 5, STEPS was
designed to support secondary (STEP 1) and postsecondary (STEP 2) autistic
adolescents and young adults with average or above average intelligence transi-
tion successfully to college. STEPS is a cognitive behavioral approach focused
on self-​determination and self-​ regulation skills to improve educational and
socioemotional outcomes (White et al., 2017). For high school students (STEP 1),
parents and one school personnel (e.g., a teacher) participated in the program
along with the student. Postsecondary students (STEP 2) participated in weekly
one-​on-​one counseling sessions and received online content that was also shared
with parents. Both STEP 1 and STEP 2 included counseling sessions and com-
munity activities (a college immersion day in STEP 1 or outings with a counselor
in STEP 2). The purpose of the immersion day was to foster self-​determina-
tion and independence in a college setting (e.g., reviewing a course syllabus and
discussing time management, meeting with the school’s disability services office
to learn about accommodations). Community outings for postsecondary students
(STEP 2) were focused on goal-​directed social integration with campus life (e.g.,
attending a club meeting, finding buildings on campus). Additionally, the coun-
selor in STEP 2 maintained regular communication with the student outside of
sessions to monitor and ensure progress toward goals (White et al., 2017). In an
RCT of STEPS, high school students showed higher levels of parent-​reported
transition readiness to enter college (STEP 1) than the control group. College
students showed higher levels of adjustment to college (STEP 2) compared to
the control group. Further, these gains in adjustment showed increased mainte-
nance after program completion in students with higher self-​determination skills.
However, both groups showed limited maintenance of skills at a 2-​week follow-​
up, suggesting a need for further investigation into long-​term treatment outcomes
of transition readiness programs.
McGill Transition Support Program (Nadig et al., 2018). Nadig and colleagues
(2018) conducted a small RCT of the McGill Transition Support Program for
38

38 P sychological T herapies for A dults W ith A utism

small groups of four to six autistic young adults without a co-​occurring diag-
nosis of intellectual disability. To promote participant independence, caregivers
were not included in the intervention. The program targeted social communi-
cation, self-​determination, and working with others. Additional aims included
improving quality of life and social problem solving. Participants in the interven-
tion group reported increases in self-​determination (including self-​regulation)
and quality of life compared to the control group (Nadig et al., 2018).
Acquiring Career, Coping, Executive Control, and Social Skills Program (ACCESS;
Oswald et al., 2018). Another group intervention, the ACCESS Program, aimed
to promote adult functioning and independence through social, adaptive, coping,
and self-​determination skills in autistic adults who had completed high school
(Oswald et al., 2018). While participants were not all within the transition age, the
curriculum was designed to meet the needs of autistic young adults. This program
also included concurrent groups for caregivers to learn to support participants. In
a waitlist control RCT, participants showed gains in adaptive skills, self-​determi-
nation, and ability to access support from family and friends (coping).
The Connections Program (Hillier et al., 2018). This program provides a sup-
port group intervention targeting autistic college students (Hillier et al., 2018).
Program curriculum included academic skills, interpersonal social skills and
group work, future plans, and time and stress management. In a noncontrolled
(open) trial, the authors reported that participation in the Connections Program
was associated with decreased anxiety and loneliness and increased self-​esteem.
TEACCH School Transition to Employment and Postsecondary Education
Program (T-​STEP; Klinger & Dudley, 2020). The T-​STEP program was created as a
comprehensive, manualized 12-​week intervention program for 16-​to 21-​year-​old
autistic transition aged youth. The curriculum is designed to address autism-​spe-
cific challenges including goal planning and attainment (focused on daily living
skills and self-​determination), EF (i.e., time management, organization), emotion
regulation (i.e., coping with distress, accepting corrective feedback), and social/​
theory of mind skills (i.e., social niceties, effectively asking for help; see Table 4-​2).
The T-​STEP was designed to be implemented as a WIOA Pre-​ETS program
for autistic transition-​aged youth currently enrolled in high school or college and
includes all five of the Pre-​ETS services. Specifically, the T-​STEP intervention
includes a 24-​session work-​based readiness class (i.e., a twice-​weekly community
college class), a work-​based learning experience (i.e., a 2-​hour per week intern-
ship to practice the soft skills learned in the T-​STEP class), and weekly counseling
services that mirror services typically provided on a college campus (i.e., self-​ad-
vocacy, career, and higher education/​academic counseling). Caregivers partici-
pate in initial goal setting sessions and receive regular newsletters throughout the
intervention to support generalization of skills. Skills are taught using a variety
of evidence-​based practices (Hume et al., 2021; see Table 4-​3). Because the ma-
jority of autistic students begin postsecondary education at a community college
(i.e., 88% of young autistic adults attended 2-​year colleges or vocational/​technical
schools; Roux et al., 2015), community colleges were thought to represent an ideal
location to provide interventions for autistic transition-​aged youth.
39

Table 4-​2 T-​STEP Didactic Class Sessions

Session Skill Area Session Content
Pre Goal planning Individual goal achievement planning.
1 Introduction to T-​STEP.
2 Tools and internships.
3 Executive function Introduction to time management skills.
4 Executive function Developing a personal time management
system.
5 Social communication Introduction to asking for help.
6 Social communication Developing an asking for help routine
strategy.
7 Review: Executive function Video modeling: time management and
& Social communication asking for help routine strategies.
8 Review: Executive function Practice: time management and asking for
& Social communication help routine strategies.
9 Emotion regulation Introduction to distress and coping.
10 Emotion regulation Developing a calming routine strategy.
11 Emotion regulation Developing a calming routine strategy
(continued).
12 Executive function Developing a flexibility routine strategy.
13 Executive function Introduction to organizational skills.
14 Executive function Developing organizational skills routine
strategies.
15 Review: Emotion regulation Video modeling: calming and
& Executive function organizational skills routine strategies.
16 Review: Emotion regulation Practice: calming and organizational skills
& Executive function routine strategies.
17 Social communication Introduction to professional social skills.
18 Social communication Developing a professional social skills
routine strategy.
19 Emotion regulation Introduction to dealing with corrective
feedback.
20 Emotion regulation Developing a dealing with corrective
feedback routine strategy.
21 Review: Social Video modeling: professional social skills
communication & Emotion and dealing with corrective feedback
regulation routine strategies.
22 Review: Social Practice: professional social skills and
communication & Emotion dealing with corrective feedback routine
regulation strategies.
23 Review Summary and review of skills and
strategies.
24 Wrap-​up and next steps.
40

Table 4-​3 Evidence-​Based Practices Integrated Into the T-​STEP

Treatment Description T-​STEP Examples

Cognitive behavioral/​ Teaches explicit strategies to Relaxation strategies
instructional strategies change thinking, behavior, including deep breathing
(CBIS) and self-​awareness. and muscle relaxation
routines, and cognitive
restructuring, mantras
for challenging irrational
thoughts.
Modeling (MD) Demonstration of a target Role-​plays of asking for
skill or behavior. help.
Reinforcement (R) Consequences following a Self-​reinforcement: goal
skill or behavior to promote setting and rewards for
future use of the skill or accomplishment.
behavior.
Self-​management (SM) Teaches self-​management Use of self-​monitoring
and self-​regulation strategies checklists for
in managing own behaviors organizations.
and skills.
Social narratives (SN) Explains social situations Social narrative routines
to highlight the perspective for greetings and
of others and to suggest compliments.
appropriate responses.
Task Analysis (TA) Breaks down complex Breaking down goals
behavioral skills into smaller into action steps. Use
components. Increases of routine strategies to
independence in performing break down complex
the larger behavioral skills behavior (e.g., asking
over time. for help) into a series of
specific steps.
Video Modeling (VM) Uses video technology Group videos of
to record and show managing constructive
demonstration of a target feedback and asking for
behavior or skill. help.
Visual Supports (VS) Concrete cues about an Use of visual reminder
activity, expectation, skill, systems including
or routine such as visual daily calendar for time
schedules, work systems, management, strategies
graphic organizers, and for organizing study or
scripts. workplace.
41

Easing the Transition to Adulthood41

Initial research supports the efficacy of the T-​STEP. In an open trial pilot study,
57 students (aged 17–​21 years; average age 19.3 years) completed the T-​STEP
across three community colleges (Klinger & Dudley, 2020). Following student
completion of the T-​STEP, caregivers reported improved employment readiness
skills and daily living skills. Students reported increased self-​determination. In
focus groups, students reported that the program helped prepare them to learn
how to function in the adult world so that they could be successful as a college
student and in the workplace. They responded that the program was “definitely”
worth the time and that they would recommend it to others. Thus, across quali-
tative and quantitative assessments, initial results are promising for the T-​STEP
as an intervention addressing autism specific challenges during the transition to
adulthood.

CASE STUDY

Intake Interview and Assessment

Jason is an 18-​year-​old autistic male who lives at home with his parents. He
graduated from high school with a general education diploma and 3.0 GPA.
Jason struggled during his first semester at community college and withdrew
from all but two classes and earned poor grades in both classes. At intake, Jason
had a part-​time job at the local home improvement store and was practicing
driving to get his driver’s license. At home, his parents reported that while
Jason could independently complete steps for self-​care he needed reminders
even for basic skills such as brushing his teeth. Jason and his parents reported
that he struggled with time management, including being late to classes and
failing to complete or turn in homework. Jason was accustomed to more in-
volved teacher support from his high school setting, and he did not understand
how to seek help when he started to struggle at the community college or at
work. Jason reported feeling frustrated and anxious most of the time and that
he often experienced emotional outbursts at home including crying and yelling
at his parents.
Jason showed significant difficulties on the Behavior Rating Inventory of
Executive Function-​Adult (Gioia et al., 2005), earning an overall score of 57
(77th percentile) on the parent report version. Similarly, his parents reported
poor work readiness skills on the Becker Work Adjustment Profile (Becker,
2005), with an overall score of 56 (73rd percentile). Jason obtained a Full-​Scale
IQ score (Wechsler & Chou, 2011) of 116 in the above average range. In contrast,
his Vineland Adaptive Behavior (Sparrow et al., 2016) composite score was much
lower at 75.
42

42 P sychological T herapies for A dults W ith A utism

Case Formulation and Intervention Goals

Without the structure and supports of high school, and with the increased
demands of college along with a part-​time job, Jason struggled to compensate for
problems typically associated with his autism including EF, emotion regulation,
social skills, daily living skills, and self-​determination. At his local community
college, Jason began the T-​STEP Program. During the goal planning/​attainment
module, Jason chose goals related to education (i.e., “I want to make B’s in my
two classes”), employment (i.e., “I want to increase my hours at work”), and inde-
pendent living (i.e., “I want to learn to cook different foods”).

Strategies and Techniques

Throughout the semester, Jason was given a workbook to support his learning
the T-​STEP tools (e.g., visual reminders, self-​monitoring, self-​reward, and routine
strategies for time management, professional social skills, and emotion regula-
tion skills). A variety of evidence-​based strategies were used to teach Jason these
skills (see Table 4-​3). During the time management module, Jason was hesitant
to try a planner system that incorporated a calendar listing his daily activities as
well as self-​monitoring of progress toward his goals. However, when the planner
was individualized to fit his personal goals (i.e., to write in a time to remember to
prepare a snack before work), he began to use the planner more frequently. His
program instructor coached him to think about how he could use his planner to
prevent most mishaps (e.g., running late to an appointment, not having materials
needed for class). He also included self-​reward activities in his schedule to rein-
force use of time management skills.
During the coping with distress module, Jason created a “calming routine
strategy” using a combination of cognitive behavioral intervention strategies
(e.g., deep breathing, visualization, mantra) that he could use “in the moment”
when he was distressed. He was encouraged to use visual supports to help him
remember to use his routine strategies and was particularly enthusiastic about
creating a visual reminder for himself that he laminated and kept in his wallet
to remind him to use his calming routine strategy. He was also able to use
this strategy to manage his anxiety when given corrective feedback at work or
school.
Next, Jason and his classmates covered the professional social skills module, in-
cluding the importance of using an “asking for help routine strategy.” The concrete
structure of the “asking for help routine strategy” seemed to make sense to Jason
and to provide clarity around a confusing process that had seemed obscure to him.
He reported that at work he had been worried about asking for help and that he
was motivated to use this strategy in the future. When the topic of social niceties
(e.g., greetings) was discussed, Jason reported that he knew all of these skills and
43

Easing the Transition to Adulthood43

felt he did not have much room for improvement. However, upon engaging in a
video-​modeling exercise with his peers in which common social mishaps were
enacted, Jason realized that he could make improvements, including greeting his
classroom instructors when entering class, telling the instructors “thank you” for
the class when leaving, and using greetings at his internship and his part-​time
work. Jason used a variety of visual reminders to support more frequent use of his
new social behaviors. He began smiling more and engaged in more social interac-
tion with peers in class.

Outcomes

At the end of the program, Jason’s mother reported improvements in time man-
agement (“he doesn’t need much prompting to do things when asked”), self-​de-
termination (“he’s more assertive and has more self-​confidence”), and improved
social skills (“he’s more positive and kinder”). Jason also received a glowing eval-
uation and recommendation letter from his internship supervisor. Jason left his
job at the home improvement store for a job he was excited to get at a local office
(similar to his T-​STEP internship). He began driving to his job and to classes
and continued to improve his study habits and academic performance. Jason re-
ported increases in self-​determination and decreases in anxiety, spontaneously
telling his T-​STEP instructors that the program worked for him because the rou-
tine strategies actually taught him how to do the different organization, coping,
and social skills rather than just telling him that he needed to improve in these
areas. He reported that the “T-​STEP gave me the confidence to do things I had
been too reserved to do in the past.”

CONCLUSIO NS

Regardless of cognitive abilities, autistic transition-​aged youth have difficulties

with EF, social skills, emotion regulation, adaptive behavior, and self-​determi-
nation, which may lead to increased difficulties in postsecondary and employ-
ment settings. There is emerging evidence that targeted interventions focused on
these skills may ease the transition to adulthood. However, because of the rela-
tive recency of these transition programs for individuals with average or higher
intellectual abilities, there is no knowledge about how these interventions lead
to long-​term outcomes, including employment, postsecondary education, and
quality of life. Further, there is no research identifying which transition-​aged
youth benefit from which of these specific transition supports or a combination
of these supports. Thus, further research is needed to recommend a personalized
approach for autistic transition-​aged youth.
4

44 P sychological T herapies for A dults W ith A utism

REFERENCES

Alverson, C. Y., & Yamamoto, S. H. (2017). Employment outcomes of vocational rehabil-

itation clients with autism spectrum disorders. Career Development and Transition
for Exceptional Individuals, 40(3), 144–​155.
Alverson, C. Y., & Yamamoto, S. H. (2018). VR employment outcomes of individuals
with autism spectrum disorders: A decade in the making. Journal of Autism and
Developmental Disorders, 48(1), 151–​162.
Ambery, F. Z., Russell, A. J., Perry, K., Morris, R., & Murphy, D. G. M. (2006).
Neuropsychological functioning in adults with Asperger syndrome. Autism, 10(6),
551–​564.
Bauminger, N., Shulman, C., & Agam, G. (2003). Peer interaction and loneliness in high
functioning children with autism. Journal of Autism and Developmental Disorders,
33(5), 489–​507.
Becker, R. L. (2005). Becker Work Adjustment Profile: 2. Program Development Associates.
Bellini, S. (2004). Social skill deficits and anxiety in high-​functioning adolescents with
autism spectrum disorders. Focus on Autism and Other Developmental Disabilities,
19(2), 78–​86.
Bishop-​Fitzpatrick, L., Hong, J., Smith, L. E., Makuch, R. A., Greenberg, J. S., & Mailick,
M. R. (2016). Characterizing objective quality of life and normative outcomes in
adults with autism spectrum disorder: An exploratory latent class analysis. Journal
of Autism and Developmental Disorders, 46(8), 2707–​2719.
Bishop-​Fitzpatrick, L., Mazefsky, C. A., Minshew, N. J., & Eack, S. M. (2015). HHS public
access. Autism Research, 8(2), 164–​173.
Bottema-​Beutel, K., Kapp, S. K., Lester, J. N., Sasson, N. J., & Hand, B. N. (2020). Avoiding
ableist language: Suggestions for autism researchers. Autism in Adulthood.
Brunsdon, V. E. A., Colvert, E., Ames, C., Garnett, T., Gillan, N., Hallett, V., Lietz, S.,
Woodhouse, E., Bolton, P., & Happ, F. (2014). Exploring the cognitive features in
children with autism spectrum disorder, their co-​twins, and typically developing
children within a population-​based sample. The Journal of Child Psychology and
Psychiatry, 56(8), 893–​902.
Burgess, S., & Cimera, R. E. (2014). Employment outcomes of transition-​aged adults
with autism spectrum disorders: A state of the states report. American Journal on
Intellectual and Developmental Disabilities, 119(1), 64–​83.
Cheak-​Zamora, N. C., Maurer-​Batjer, A., Malow, B. A., & Coleman, A. (2020). Self-​
­determination in young adults with autism spectrum disorder. Autism, 24(3),
605–​616.
Chiarotti, F., & Venerosi, A. (2020). Epidemiology of autism spectrum disorders: A re-
view of worldwide prevalence estimates since 2014. Brain Sciences, 10(5), 274.
DaWalt, L. S., Greenberg, J. S., & Mailick, M. R. (2018). Transitioning together: A multi-​
family group psychoeducation program for adolescents with ASD and their parents.
Journal of Autism and Developmental Disorders, 48(1), 251–​263.
de Vries, M., & Geurts, H. (2015). Influence of autism traits and executive functioning on
quality of life in children with an autism spectrum disorder. Journal of Autism and
Developmental Disorders, 45(9), 2734–​2743.
45

Easing the Transition to Adulthood45

Duncan, A. W., & Bishop, S. L. (2015). Understanding the gap between cognitive abilities
and daily living skills in adolescents with autism spectrum disorders with average
intelligence. Autism, 19(1), 64–​72.
Farley, M. A., McMahon, W. M., Fombonne, E., Jenson, W. R., Miller, J., Gardner, M.,
Block, H., Pingree, C. B., Ritvo, E. R., Ritvo, R. A., & Coon, H. (2009). Twenty-​year
outcome for individuals with autism and average or near-​average cognitive abilities.
Autism Research, 2(2), 109–​118.
Flower, R. L., Richdale, A. L., & Lawson, L. P. (2020). Brief report: What happens after
school? Exploring post-​school outcomes for a group of autistic and non-​autistic
Australian youth. Journal of Autism and Developmental Disorders, 51, 1–​7.
Hallett, V., Lecavalier, L., Sukhodolsky, D. G., & Cipriano, N. (2013). Exploring the
manifestations of anxiety in children with autism spectrum disorders. Journal of
Autism and Developmental Disorders, 43(10), 2341–​2352.
Hatfield, M., Murray, N., Ciccarelli, M., Falkmer, T., & Falkmer, M. (2017). Pilot of the
BOOST-​ATM: An online transition planning program for adolescents with autism.
Australian Occupational Therapy Journal, 64(6), 448–​456.
Hatfield, M., Falkmer, M., Falkmer, T., & Ciccarelli, M. (2017). Effectiveness of the
BOOST-​ATM online transition planning program for adolescents on the autism
spectrum: A quasi-​randomized controlled trial. Child and Adolescent Psychiatry and
Mental Health, 11(1), 1–​13.
He​ndri​cks, D. (2010). Employment and adults with autism spectrum disorders: Challenges
and strategies for success. Journal of Vocational Rehabilitation, 32, 125–​134.
Hillier, A. J., Campbell, H., Mastriani, K., Izzo, M. V., Kool-​Tucker, A. K., Cherry, L., &
Beversdorf, D. Q. (2007). Two-​year evaluation of a vocational support program for
adults on the autism spectrum. Career Development and Transition for Exceptional
Individuals, 30(1), 35–​47.
Hillier, A. J., Goldstein, J., Murphy, D., Trietsch, R., Keeves, J., Mendes, E., & Queenan,
A. (2018). Supporting university students with autism spectrum disorder. Autism,
22(1), 20–​28.
Hirvikoski, T., & Blomqvist, M. (2015). High self-​perceived stress and poor coping
in intellectually able adults with autism spectrum disorder. Autism, 19(6),
752–​757.
Hollocks, M. J., Lerh, J. W., Magiati, I., Meiser-​Stedman, R., & Brugha, T. S. (2019).
Anxiety and depression in adults with autism spectrum disorder: a systematic re-
view and meta-​analysis. Psychological Medicine, 49(4), 559–​572.
Hume, K., Steinbrenner, J. R., Odom, S. L., Morin, K. L, Nowell, S. W., Tomaszewski,
B., Szendrey, S., McIntryre, N., Yucesoy-​Ozkan, S., & Savage, M. (2021). Evidence-​
based practices for children, youth, and young adults with autism: Third generation
review. Journal of Autism and Developmental Disorders. https://​doi.org/​10.1007/​
s10803-​020-​04844-​2
Jones, C. R. G., Simonoff, E., Baird, G., Pickles, A., Marsden, A. J. S., Tregay, J., Happé,
F., & Charman, T. (2018). The association between theory of mind, executive func-
tion, and the symptoms of autism spectrum disorder. Autism Research, 11(1),
95–​109.
46

46 P sychological T herapies for A dults W ith A utism

Kenny, L., Cribb, S. J., & Pellicano, E. (2019). Childhood executive function predicts later
autistic features and adaptive behavior in young autistic people: A 12-​year prospec-
tive study. Journal of Abnormal Child Psychology, 47(6), 1089–​1099.
Kent, R., & Simonoff, E. (2017). Prevalence of anxiety in autism spectrum disorders.
In C. M. Kerns, P. Renoo, E. A. Storch, P. C. Kendall, & J. J. Wood (Eds.), Anxiety
in Children and Adolescents with Autism Spectrum Disorder: Evidence-​ Based
Assessment and Treatment (pp. 5–​32).
Kim, S. Y. (2019). The experiences of adults with autism spectrum disorder: Self-​
­determination and quality of life. Research in Autism Spectrum Disorders, 60,
1–​15.
Klinger, L. G., & Dudley, K. M. (2020). Interventions to support transition to adulthood
for individuals with autism spectrum disorder. In F. Volkmar (Ed.), Encyclopedia of
autism spectrum disorders (pp. 1–​7). Springer.
Kuhn, J. L., Vanegas, S. B., Salgado, R., Borjas, S. K., Magaña, S., & Smith DaWalt, L.
(2020). The cultural adaptation of a transition program for Latino families of youth
with autism spectrum disorder. Family Process, 59(2), 477–​491.
Laugeson, E. A., & Ellingsen, R. (2014). Social skills training for adolescents and adults
with autism spectrum disorder. In F. Volkmar, B. Reichow, & J. McPartland (Eds.),
Adolescents and adults with autism spectrum disorders (pp. 61–​85). Springer.
Lawson, R. A., Papadakis, A. A., Higginson, C. I., Barnett, J. E., Wills, M. C., Strang, J. F.,
Wallace, G. L., & Kenworthy, L. (2015). Everyday executive function impairments
predict comorbid psychopathology in autism spectrum and attention deficit hyper-
activity disorders. Neuropsychology, 29(3), 445–​453.
Laxman, D. J., Taylor, J. L., DaWalt, L. S., Greenberg, J. S., & Mailick, M. R. (2019). Loss
in services precedes high school exit for teens with autism spectrum disorder: A
longitudinal study. Autism Research, 12(6), 911–​921.
Maenner, M. J., Shaw, K. A., Baio, J., Washington, A., Patrick, M., DiRienzo, M.,
Christensen, D. L., Wiggins, L. D., Pettygrove, S., Andrews, J. G., Lopez, M., Hudson,
A., Baroud, T., Schwenk, Y., White, T., Rosenberg, C. R., Lee, L.-​C., Harrington, R.
A., Huston, M., . . . Dietz, P. M. (2020). Prevalence of autism spectrum disorder
among children aged 8 years—​Autism and Developmental Disabilities Monitoring
Network, 11 sites, United States, 2016. MMWR Surveillance Summaries, 69(4),
1–​12.
McGurk, S. R., & Mueser, K. T. (2003). Cognitive functioning and employment in severe
mental illness. The Journal of Nervous and Mental Disease, 191(12), 789–​798.
McGurk, S. R., & Mueser, K. T. (2004). Cognitive functioning, symptoms, and work
in supported employment: A review and heuristic model. Schizophrenia Research,
70(2–​3), 147–​173.
Meyer, A. T., Powell, P. S., Butera, N., Klinger, M. R., & Klinger, L. G. (2018). Brief re-
port: Developmental trajectories of adaptive behavior in children and adolescents
with ASD. Journal of Autism and Developmental Disorders, 48(8), 2870–​2878.
Nadig, A., Flanagan, T., White, K., & Bhatnagar, S. (2018). Results of a RCT on a transi-
tion support program for adults with ASD: Effects on self-​determination and quality
of life. Autism Research, 11(12), 1712–​1728.
47

Easing the Transition to Adulthood47

Newman, L., Wagner, M., Knokey, A.-​M., Marder, C., Nagle, K., Shaver, D., & Wei,
X. (2011). The post-​high school outcomes of young adults with disabilities up to
8 years after high school: A report from the National Longitudinal Transition Study-​
2 (NLTS2) (NCSER 2011-​3005). SRI International. https://​ies.ed.gov/​ncser/​pubs/​
20113005/​pdf/​20113005.pdf
Oswald, T. M., Winder-​Patel, B., Ruder, S., Xing, G., Stahmer, A., & Solomon, M. (2018).
A pilot randomized controlled trial of the ACCESS Program: A group interven-
tion to improve social, adaptive functioning, stress coping, and self-​determination
outcomes in young adults with autism spectrum disorder. Journal of Autism and
Developmental Disorders, 48(5), 1742–​1760.
Pellicano, E., Kenny, L., Brede, J., Klaric, E., Lichwa, H., & McMillin, R. (2017). Executive
function predicts school readiness in autistic and typical preschool children.
Cognitive Development, 43, 1–​13.
Pugliese, C., Anthony, L., Strang, J., Dudlley, K., Wallace, G., & Kenworthy, L. (2015).
Increasing adaptive behavior skill deficits from childhood to adolescence in autism
spectrum disorder: Role of executive function. Journal of Autism and Developmental
Disorders, 45(6), 1579–​1587.
Pugliese, C. E., Anthony, L. G., Strang, J. F., Dudley, K., Wallace, G. L., Naiman, D. Q.,
& Kenworthy, L. (2016). Longitudinal examination of adaptive behavior in au-
tism spectrum disorders: Influence of executive function. Journal of Autism and
Developmental Disorders, 46(2), 467–​477.
Roth, R. M., Isquith P. K., & Gioia G. A. (2005). Behavior Rating Inventory of Executive
Function—​Adult Version (BRIEF-​A). Psychological Assessment Resources.
Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., & Anderson, K. A. (2015). National
autism indicators report: Transition into young adulthood. Life Course Outcomes
Research Program, A. J. Drexel Autism Institute, Drexel University.
Ruble, L., McGrew, J. H., Snell-​Rood, C., Adams, M., & Kleinert, H. (2019). Adapting
COMPASS for youth with ASD to improve transition outcomes using implementa-
tion science. School Psychology Quarterly, 34(2), 187–​200.
Ruble, L. A., McGrew, J. H., Toland, M., Dalrymple, N., Adams, M., & Snell-​Rood, C.
(2018). Randomized control trial of COMPASS for improving transition outcomes
of students with autism spectrum disorder. Journal of Autism and Developmental
Disorders, 48(10), 3586–​3595.
Smith, L. E., Maenner, M. J., & Seltzer, M. M. (2012). Developmental trajectories in
adolescents and adults with autism: The case of daily living skills. Journal of the
American Academy of Child and Adolescent Psychiatry, 51(6), 622–​631.
Sparrow, S. S., Cicchetti, D. V., & Saulnier, C. A. (2016). Vineland Adaptive Behavior
Scales, Third Edition (Vineland-​3). Pearson.
Sperry, L. A., & Mesibov, G. B. (2005). Perceptions of social challenges of adults with
autism spectrum disorder. Autism, 9(4), 362–​376.
St. John, T., Dawson, G., & Estes, A. (2018). Brief report: Executive function as a pre-
dictor of academic achievement in school-​aged children with ASD. Journal of
Autism and Developmental Disorders, 48(1), 276–​283.
48

48 P sychological T herapies for A dults W ith A utism

Sterling, L., Dawson, G., Estes, A., & Greenson, J. (2008). Characteristics associated with
presence of depressive symptoms in adults with autism spectrum disorder. Journal
of Autism and Developmental Disorders, 38(6), 1011–​1018.
Strang, J. F., Kenworthy, L., Daniolos, P., Case, L., Wills, M. C., & Wallace, G. L. (2012).
Depression and anxiety symptoms in children with autism spectrum disorders
without intellectual disability. Research in Autism Spectrum Disorders, 6(1),
406–​412.
Taylor, J. L., & DaWalt, L. S. (2017). Brief report: Postsecondary work and educational
disruptions for youth on the autism spectrum. Journal of Autism and Developmental
Disorders, 47(12), 4025–​4031.
Taylor, J. L., Henninger, N. A., & Mailick, M. R. (2015). Longitudinal patterns of em-
ployment and postsecondary education for adults with autism and average-​range
IQ. Autism, 19(7), 785–​793.
Taylor, J. L., Hodapp, R. M., Burke, M. M., Waitz-​Kudla, S. N., & Rabideau, C. (2017).
Training parents of youth with autism spectrum disorder to advocate for adult dis-
ability services: Results from a pilot randomized controlled trial. Journal of Autism
and Developmental Disorders, 47(3), 846–​857.
Taylor, J. L., & Mailick, M. R. (2014). A longitudinal examination of 10-​year change
in vocational and educational activities for adults with autism spectrum disorders.
Developmental Psychology, 50(3), 699–​708.
Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-​secondary educational ac-
tivities for young adults with autism spectrum disorders during the transition to
adulthood. Journal of Autism and Developmental Disorders, 41(5), 566–​574.
Tomaszewski, B., Kraemer, B., Steinbrenner, J. R., Smith DaWalt, L., Hall, L. J., Hume,
K., & Odom, S. (2020). Student, educator, and parent perspectives of self-​determi-
nation in high school students with autism spectrum disorder. Autism Research,
13(12), 2164–​2176.
Wallace, G. L., Kenworthy, L., Pugliese, C. E., Popal, H. S., White, E. I., Brodsky, E., &
Martin, A. (2016). Real-​world executive functions in adults with autism spectrum
disorder: Profiles of impairment and associations with adaptive functioning and co-​
morbid anxiety and depression. Journal of Autism and Developmental Disorders, 46,
1071–​1083.
Wechsler, D., & Chou, H. (2011). Wechsler Abbreviated Scale of Intelligence (WASI-​II).
Pearson.
Wehmeyer, M. L. (1998). Self-​determination and individuals with significant disabilities:
examining meanings and misinterpretations. Journal of the Association for Persons
with Severe Handicaps, 23(1), 5–​16.
White, K., Flanagan, T. D., & Nadig, A. (2018). Examining the relationship between self-​
determination and quality of life in young adults with autism spectrum disorder.
Journal of Developmental and Physical Disabilities, 30(6), 735–​754.
White, S. W., Elias, R., Capriola-​Hall, N. N., Smith, I. C., Conner, C. M., Asselin, S. B.,
Howlin, P., Getzel, E. E., & Mazefsky, C. A. (2017). Development of a college tran-
sition and support program for students with autism spectrum disorder. Journal of
Autism and Developmental Disorders, 47(10), 3072–​3078.
49

Easing the Transition to Adulthood49

White, S. W., Smith, I. C., Miyazaki, Y., Conner, C. M., Elias, R., & Capriola-​Hall, N. N.
(2019). Improving transition to adulthood for students with autism: A randomized
controlled trial of STEPS. Journal of Clinical Child and Adolescent Psychology, 50(2),
187–​201.
Workforce Innovation and Opportunity Act (WIOA), Publ. L. No. 113-​118, 128 Stat.
1425, 29 U.S.C. § 3101-​ 3361 (2014) https://​www.congress.gov/​113/​bills/​hr803/​
BILLS-​113hr803enr.pdf
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University-​Focused Interventions
DAVID SCHENA, GRACE LEE SIMMONS,
A S H L E I G H H I L L I E R , A N D S U S A N W. W H I T E ■

KEY CONSIDERATIONS

The majority of programs that serve young adults with autism (YAA) do not have
empirical support.

1. Programs that serve YAA in postsecondary education tend to either

assist transition into college or help with individual goal achievement
while in college.
2. These programs tend to target college-​specific needs (such as academic
success, adjusting to college daily living, and accessing disability support
services) in place of operating as direct therapy providers.
3. Empirical support for these programs tends to be based on a moderate
sample size (average of 27 participants), using a mixture of pre-​post
studies and interviews over the courses of service delivery. Only one
reviewed program has been evaluated with a randomized design.
4. Individualized mentorship was the primary component of the majority
(six out of seven) of reviewed programs. This method may be especially
useful given the highly diverse nature of abilities and symptoms in YAA.

OVER VIEW

Based on current Centers for Disease Control (CDC) estimates, approximately 1

in 54 youth have a diagnosis of autism/​ASD; Maenner et al., 2020). Autism/​ASD

In this chapter, we aim to be inclusive and respectful to all stakeholders. Terms such as college,
university, and postsecondary are used interchangeably.
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University-Focused Interventions51

rates of diagnosis began to rise in the 1990s, coinciding with heightened recogni-
tion of autism/​ASD in more cognitively able individuals. The children from this
generation are now young adults. Given that 50,000 teens with autism/​ASD enter
adulthood every year (Shattuck et al., 2012), there will be upwards of 500,000
more adults with autism/​ASD each decade. Moreover, the estimated societal cost
of supporting a single individual with autism/​ASD, without co-​occurring intel-
lectual disability, across their lifetime has been found to approach $1.5 million
(Buescher et al., 2014). Considering this in the context of the fact that just 2% of
all autism/​ASD-​related research focuses on transition and adult outcomes (U.S.
Department of Health and Human Services, 2017), the inadequacies of our cur-
rent support systems and the resulting strain on service delivery systems will grow
more problematic.
Recent literature has called for increased focus on evidence-​based pro-
gramming to address barriers that inhibit healthy adult transitions and im-
prove outcomes for youth with autism spectrum disorders (YAA), a growing,
high-​needs population (Chancel et al., 2020). Unfortunately, YAA frequently
experience poor outcomes related to independent living. The adaptive skills of
YAA stall or decline as young adults (Taylor & Seltzer, 2011) as opportunities
for continued skill development dwindle (Mazefsky & White, 2014). The first
2 years after high school completion are characterized by low rates of paid em-
ployment relative to peers with speech and language impairment, learning dis-
ability, or intellectual disability (Shattuck et al., 2012), with only about half of
YAA stably employed (Roux et al., 2013). Support systems, such as employment
supports, can therefore be of great importance for many YAA (McDonough &
Revell, 2010). This chapter will focus primarily on university-​based supports
for YAA.
A large proportion of YAA desire to earn a postsecondary degree (White et al.,
2011). The proportion of YAA enrolled is still lower than expected, however, with
notably fewer YAA attending college (32%; Wei et al., 2016) than the U.S. average
(70%; U.S. Dept. of Health and Human Services, 2017). Those who do enter col-
lege may face a wide variety of obstacles; caregivers report concerns about so-
cial involvement, academic underachievement, and campus living (Hillier et al.,
2020), which are often reflected in YAA self-​reported struggles as college students
(McLeod et al., 2019). Accordingly, support systems for college students with
autism/​ASD are of great importance, especially programs which have empirical
support. In this chapter, we describe available services and interventions devel-
oped specifically for YAA who are in postsecondary settings, including colleges
and universities. We acknowledge that there are many programs housed within
institutions of higher learning that are dedicated to promoting the academic
and social success of enrolled students with autism/​ASD. However, the research
base on these programs is small. Most support programs for YAA in college exist
without any research to support their use. As such, we endeavored to focus on
programs that have published data to support their use.
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52 P sychological T herapies for A dults W ith A utism

TRANSITION INTO COLLEGE

Beginning a college education can be a significant transition for anyone, but some
common symptoms and co-​occurring problems can make this transition especially
difficult for YAA. Impairments in executive functioning (EF) can make keeping
on top of assignments and deadlines challenging, or lead to an inflexible schedule
(Alverson et al., 2019), while social and communication difficulties can make
connecting with collegiate peers quite difficult (Dipeolu et al., 2014). Individuals
and families also need to weigh potential benefits and problems of attending a
larger university or a smaller community college, such as living arrangements and
mastery of independent living skills (Adreon & Durocher, 2007). Necessary tasks
such as navigating the college or university grounds can also be aggravated by the
presence of, for example, a co-​occurring anxiety disorder (White et al., 2011). In
a large-​scale, mixed methods needs analysis, White and colleagues (2016) found
that primary challenges identified by parents, educators, and YAA included lim-
ited interpersonal competence, managing competing demands, and poor emo-
tion regulation.
The Horizons college preparation mentoring program, offered by the University
of Massachusetts Lowell (Hillier et al., 2019), aims to alleviate many of the previ-
ously listed potential problems via a mentorship program. This program has been
in effect since 2009, and since Spring 2018 has been offered both in-​person and
online. Participants are randomly assigned to the online or in-​person version,
except during the COVID-​19 pandemic when all mentors and mentees met on-
line. Participants were eligible regardless of where they planned to attend college
and did not need to be planning to attend UMass Lowell. The primary method
of service delivery is through trained university students who provide service
to aspiring postsecondary students with autism/​ASD over the course of the six-​
week program. The Horizons mentors use a curriculum covering a broad range
of topics designed to help prepare the participants for college life and ease anxiety
around this transition.
Hillier and colleagues (2019) found that, at the conclusion of the Horizons pro-
gram, participants felt better prepared for college life, had a better understanding
of how college works, were more familiar with the structure of college lectures,
and were increasingly aware of how to access support on campus compared to
the beginning of the program. When asked, most participants were very positive
about the program model and almost all reported they would recommend the
program to others. Participants were particularly enthusiastic about the opportu-
nity to meet one-​on-​one with a peer who was currently in college,—​a highly val-
uable resource. The flexibility of the program model, which allows the curriculum
to be tailored to the needs of individual participants, was also praised for pro-
viding an authentic approach where the students’ own preferences and priorities
are at the center of the program.
The Stepped Transition in Education Program for Students with autism/​
ASD (STEPS; White et al., 2017) also provides support to high school students
53

University-Focused Interventions53

transitioning into adulthood. Unlike Horizons, which aims to improve perfor-

mance through familiarity, STEPS highlights self-​knowledge, self-​regulation, and
self-​determination as targets for the program (White et al., 2017). Development of
STEPS included a participatory process approach: developers integrated feedback
from focus groups (e.g., college students with autism/​ASD, parents of students with
autism/​ASD, educators and school personnel) as well as results from a nationwide
online survey and consultation with a panel of clinical scientists and educators
(White et al., 2017). The STEPS curriculum includes two distinct “levels”: STEP 1
provides support for high school students planning the transition to college (six
biweekly therapy sessions, parent coaching, and an immersion experience); STEP
2 is designed for YAA who have exited secondary school and have enrolled in col-
lege or not yet matriculated into secondary education (described in the following
section). Students may participate in one or both STEPS levels. Initial findings
from the STEPS randomized controlled trial (RCT) with 59 YAA indicated a sig-
nificant treatment effect, where participants randomly assigned to participate in
STEPS 1 demonstrated significant differences in transition readiness compared to
those assigned to transition as usual (TAU; White et al., 2019). Specifically, high
school students who participated in STEPS 1 were noted by their parents to be
more prepared for the transition into college (White et al., 2019). Findings from
this RCT suggest STEPS 1 offers demonstrable clinical utility in increasing high
school students’ transition readiness as they prepare for adulthood.

SUPPOR TS WHILE IN COLLEGE

Once enrolled in college, students with autism/​ASD can access universal student
supports such as academic advising, tutoring, counseling, and careers services. If
they register with the disability services office, they may be able to access academic
accommodations and other supports. However, availability of services varies
across institutions and factors such as self-​regulation and self-​advocacy may con-
tinue to be problems for some students (Adreon & Durocher, 2007; White et al.,
2011). Navigating the social world of college may become more important as
YAA seek to make friends and join groups. The fast-​paced and somewhat unpre-
dictable college lifestyle may prove difficult for some students to navigate, which
may co-​occur with the potential to experience stigmatization (Cox et al., 2020).
Increasingly, universities are focusing on the retention and success of students
with autism and many have developed tailored programming to address their spe-
cific needs. These supports continue to be of great importance, especially with
respect to promoting social growth and development and buffering against exec-
utive functioning challenges.
Findings from the STEPS RCT with 59 YAA (described previously) indicated
a nonsignificant treatment effect of STEPS 2 at follow up (i.e., two weeks after
completion of the STEPS 2 program); however, a significant immediate treatment
effect (i.e., while enrolled in STEPS 2, p =​.02) was noted (White et al., 2019).
54

54 P sychological T herapies for A dults W ith A utism

Specifically, university students who participated in STEPS 2 were noted to adapt

more readily to the demands of college compared to those assigned to TAU, per
their own self-​report, while enrolled in STEPS 2 (White et al., 2019). Additional
analyses of this cohort suggested that participants in the STEPS program experi-
enced a significant reduction in depressive symptoms compared to those in TAU,
though significant differences between the groups were not noted across meas-
ures of anxiety or loneliness (Capriola-​Hall et al., 2020). Findings suggest STEPS
offers clinical utility not only in improving YAA-​perceived adjustment to college,
but also in its mitigation of internalizing symptoms often experienced by YAAs
during this transition period.
The Connections program is a support group model designed to address
common challenges seen among YAA in a university setting. Aiming to pro-
mote friendship, mutual support, and connection between students with autism/​
ASD, Connections was in place at the University of Massachusetts Lowell from
2011–​2018. This program was subsequently merged into a support group tailored
for a broader population of students experiencing social challenges and anxiety,
with the Connections structure forming the foundation of this and future serv-
ices. Participants in Connections enrolled in a 7-​week curriculum designed to
address topics including social life on campus, academic skills, managing group
work, and time and stress management. Retrospective data from nine separate
cohorts seen over a period of 6 years (n =​52) were analyzed. Results indicated an
increase in self-​esteem, reduced loneliness, and lower generalized anxiety at the
end of the support group program compared to the beginning (Hillier et al., 2018).
Academic outcomes were also positive, with the majority (n =​41; 79%) having
either graduated or being currently enrolled at the time of data collection (Hillier
et al., 2018), impressive when compared to a graduation rate of 63% across the
university (University of Massachusetts Lowell, 2018). Social validity was also high
with participants indicating they had enjoyed the program, had made friends, and
would recommend the program. When examined, a participant sample described
improved postsecondary skills, such as study skills, knowledge of how to access
resources and supports, goal-​setting skills, and stress-​coping skills. Previous work
has indicated that many of these areas are challenges for students with autism/​ASD
(Alverson et al., 2019; Van Hees et al., 2015), so it is significant that the participants
mentioned these as areas of improvement following the group intervention.
The Autism Mentorship Initiative (AMI) also aims to serve YAA during their
college careers (Roberts & Birmingham, 2017; Trevisan et al., 2020). Offered
through Simon Frasier University in British Columbia, Canada, AMI is a pro-
gram encompassing the entirety of the traditional school year, beginning in
September and terminating in May. Participants in this program are assigned to
a mentor who is also a Simon Frasier student. The mentors receive initial and on-
going training in order to best serve program participants. Within this mentoring
system, AMI is individually directed and focused, such that every participant
could be working on a different skill at the same time. Participants are encouraged
to articulate their goals and difficulties in order to work with their mentor toward
an improved outcome. AMI’s home page describes some potential goals, such as
5

University-Focused Interventions55

improving academic skills, increasing knowledge of campus life, and becoming

familiar with the availability of support (Centre for Accessible Learning, 2020).
Other skills may include more familiar goals for people with autism/​ASD (such
as “improving communication ability”), but with a distinctive college flair; as op-
posed to working on communication as a whole, participants may seek to improve
at talking to professors. Finally, in the event that participants wish to continue in
the program, involvement is renewable after the termination of each year’s serv-
ices. AMI was evaluated by Trevisan and colleagues (2020) in a multiple time-​
point survey study; 19 students and 21 mentors consented to participate in the
study, which consisted of pre-​post participation comparison of scores on a variety
of topics, collectively described as “college adjustment” and grade-​point average.
Researchers found that participants’ academic performance did not differ signifi-
cantly from September to May; however, they did note that participants made sig-
nificant gains in all aspects of “college adjustment,” including social functioning
and emotional adjustment.
York University in Ontario, Canada offers a somewhat different program
known as the autism/​ASD Mentorship Program (AMP). Within AMP, mentors
aim to provide participating YAA with skills necessary to succeed in college.
AMP exclusively employs graduate students as mentors and uses a combination
of individual meetings and group sessions (Children’s Learning Projects, 2014) to
teach these goals. The method of goal selection is also somewhat unique to this
program; AMP presents potential goals which address academic domains (e.g.,
“Improve study skills and grades”) social domains (e.g., “Develop or improve ro-
mantic relationships”) and self-​regulatory domains (e.g., “Better understand and
cope with my feelings”; Ames et al., 2016). Participants select one of these goal
categories and develop a specific goal or set of goals based on their desires and
individual circumstances: while two participants might select “Improve study
skills and grades,” one participant might focus on setting aside dedicated study
time, while another may strive to use a better study method. Between weekly
or biweekly individual meetings and monthly or semimonthly group meetings,
AMP aims to provide a supportive environment in which students can prioritize
skill development. Ames and colleagues (2016) followed 15 participants through
the program, as well as summarizing the growth of the program itself. Students
tended to work on an average of six goals during their time with AMP, with 80%
of students reporting that they achieved all or most of their goals. These goals
tended to target social skills as a whole, improving emotional coping, and devel-
oping and improving both friendships and romantic relationships. Dating, ro-
mance, and sexual health were also particularly commonly appreciated topics as
discussion topics during group meetings (Ames et al., 2016). Finally, the program
itself reported a growth of 200% in its first 4 years of existence, though the exact
number of participants yearly is unclear.
Inspired by AMP, researchers at Curtin University in Western Australia devel-
oped the Curtin Specialist Mentoring Program (CSMP) for university students with
autism/​ASD (Siew et al., 2017). Students with autism/​ASD have the opportunity to
register and receive mentoring from a peer, who is either a graduate student or
56

56 P sychological T herapies for A dults W ith A utism

an honors psychology student in their final year (Curtin University, 2020). CSMP
primarily offers support through individual, weekly, 60-​minute meetings over the
course of one academic semester. Qualitative data collected from mentors indi-
cated that mentees most frequently discussed time management, communication
with professors and peers, and academic support in these one-​on-​one meetings
(Hamilton et al., 2016). Participants and their mentors also participated in weekly
social groups designed to facilitate social interaction and provide opportunities to
practice social skills. Results from an initial pilot study of the program are prom-
ising; in addition to high rates of program satisfaction, all CSMP participants re-​
enrolled in the second semester of college. Additionally, a sample of 10 participants
reported feeling significantly more supported and had significantly reduced com-
munication anxiety after completion of CSMP (Siew et al., 2017). Qualitative
results emphasized a number of positive outcomes including assistance with the
transition to college, preparation for self-​advocacy in communicating with college
staff, and improved ability to manage emotions (Siew et al., 2017).
Finally, researchers at the City University of New York designed Project REACH,
a group-​based intervention for college students with autism/​ASD which focuses on
co-​primary goals of improving self-​advocacy and developing social skills (Gillespie-​
Lynch et al., 2017). The semester-​long program was implemented twice, with two
different groups of students who either self-​identified as autistic and/​or received
services in high school for autism, based on review of their individual education
plans. Participants were paired with a trained mentor (undergraduate and grad-
uate students) who provided weekly, one-​on-​one counseling for the semester (14
weeks). Additionally, participating students attended weekly, hour-​long, mentor-​
led group sessions with up to eight other students for approximately 10 weeks. The
first program curriculum (spring semester) focused largely on social skills, while
the second program (fall semester) focused more explicitly on developing self-​ad-
vocacy, based on feedback provided during focus groups where students reported
themes of self-​advocacy after participating in the spring program (e.g., continued
reliance on others to advocate for them; Gillespie-​Lynch et al., 2017). When piloted
with 28 participants, findings indicated that participants reported significantly
increased perceived social support from friends after completing the self-​advo-
cacy focused program, though this was not noted in the social-​skill focused pro-
gram. Furthermore, the integration of self-​advocacy content into the standardized
curriculum resulted in participants’ report of significantly increased academic
self-​advocacy skills at the end of the fall semester (Gillespie-​Lynch et al., 2017).
The authors’ integration of student feedback in tailoring the curriculum to their
participants’ needs highlights the importance of using stakeholder perspectives to
shape intervention work and maximize therapeutic gains.

CASE STUDY

Philip is an 18-​year-​
old White male who was diagnosed with autism/​ ASD
at age 2. Philip wanted to study biology, engineering, or a combination of the
57

University-Focused Interventions57

two disciplines. To best achieve this goal, he entered the Horizons program in
spring 2020 (aged 17). He was matched with a mentor from the University of
Massachusetts Lowell, a female senior psychology major, and they met during
Philip’s senior year of high school in spring 2020. Philip completed the program
despite the onset of the COVID-​19 pandemic; his mentor described him as an “at-
tentive listener,” “very engaged,” and “advanced in his knowledge about college.”
At the end of his time with Horizons, Philip reported being eager to take on
increased responsibility, having a clearer understanding of college coursework,
and feeling more content with his decision to go to college than he had reported at
the beginning of the program. He especially appreciated that Horizons “takes into
account individual students” and educates on the individual level. When asked
about his least favorite aspect of the program, he described that it was “not fully
prepared for students that are ahead” and suggested that the program could “make
a schedule for students who are already accepted or have chosen their college.”
Philip also participated in a 1-​year follow-​up interview to describe his college
experience and to further discuss his experiences in the Horizons program. He
had completed his fall semester at a local 4-​year private university where he took
five classes and earned a GPA of 3.48. At this time, he was taking four classes, a
workload which he reported was harder than that in his first semester. Philip is
commuting to campus each day. He is connecting with others on campus, par-
ticularly through a weekly radio sports show he hosts. While he felt there were
fewer social opportunities due to COVID-​19, he has made friends through
classes and clubs. He plans to seek out an internship in his field the following
year. When asked, he described his primary challenge as the timely completion of
assignments and had grown to dislike how many classes assigned work at the same
time. He also described how the ever-​changing pace of college life had proven to
be difficult to adjust to. However, Philip had accessed accommodations through
Disability Services, including extra time on tests, use of a smart pen, permission
to type notes in class, accessing copies of professors’ notes, personally recording
lectures, and sometimes testing in a distraction-​free environment. Finally, con-
cerning Horizons, he described the meetings with his mentor as helpful and was
glad he took part.

OVERALL DISCUSSION

Certain commonalities run through the previously mentioned programs, regard-

less of whether they target transitioning students or students established in col-
legiate life. These programs tend to operate on the individual level or in small
groups augmented by frequent individual sessions. Horizons and STEPS, for ex-
ample, make use of individual meetings, while AMP and Project REACH com-
bine this individual approach with regular group sessions. This is an interesting
trend and a practical response to the famous heterogeneity of symptoms, abilities,
and needs within the autistic population (Hollander et al., 2011). Connections,
in contrast, prioritizes group meetings and discussions over individual goal
58

58 P sychological T herapies for A dults W ith A utism

completion in service to the primary goal of promoting friendship and support

between students with autism/​ASD.
It is also interesting that most reviewed programs contain an element of “men-
torship.” Exactly whom this mentorship is coming from varies slightly from pro-
gram to program. Horizons and AMI both use undergraduates as mentors, while
STEPS and AMU recruit graduate student mentors. The exact sources of mentors
may be indicative of a variety of factors, such as mentorship philosophy (e.g.,
whether the influence of a peer or a professional may be superior) and pragmatic
considerations (e.g., availability of doctoral students). However, the commonality
of this mentorship approach itself necessitates further investigation, especially re-
garding the social improvements and advances in college adjustment reported by
these programs.
Finally, in terms of the research itself, studies contained an average of 27
participants (SD 16.34, range 7–​59). These studies were usually conducted in
one-​on-​one settings, either in entirety (six studies) or in part (two studies). Only
one program, Connections, was studied entirely in the context of groups. Studies
rarely described their settings, with no study taking place entirely in any one lo-
cation. While few studies stated it, most studies could be presumed to be open
trials, with only one program, STEPS, using an RCT approach. The remainder
used either pre-​post assessment measures (Connections, AMI, AMP, UNY) or
these measures with interviews (CSMP, Horizons).

CONCLUSION AND CALL FOR RESEARCH

These programs stand as examples of empirically supported programs for col-

lege students with autism/​ASD across two North American countries. However, it
would seem that the vast majority of university-​level programs which give service
to students autism/​ASD remain without empirical support. For example, CAN
released “United States College Programs for Autistic Students” (McDermott et al.,
2020), a document which reviews university autism-​centered programs across the
continental 48 United States. A total of 82 programs were described, including
details about the operating university (city, usual length of program, etc.) and
the university’s affiliated autism-​centered program, where applicable. We took
a sample of 20 of these listed programs and searched for empirical evaluations
using the following search engines: Academic Search Premier, Alternative Press
Index, APA PsycArticles, APA PsycInfo, ERIC, and Google Scholar. No empir-
ical support was found for programs reviewed, though some programs did have
published material describing them (such as Texas A&M’s Spectrum Living
Learning Community; Hurley, 2020). While we do not dismiss the possibility of
empirical support for reviewed programs (which may be in-​press or in another
database), this brief literature review suggests that most college autism services
operate without empirical support. This may be understandable, given that the
need for programming has far outpaced the field’s ability to keep up in terms of
identifying research-​supported transition services.
59

University-Focused Interventions59

However, some programs without direct empirical support may be more prom-
ising than others due to a connection with an already-​supported program. For
example, the TEAACH School Transition to Employment and Post-​Secondary
Education Program (T-​STEP) is an extension and specialization of the well-​known
TEAACH method (see c­ hapter 4). TEAACH itself is a program demonstrated to
be effective at improving social skills, executive functioning, and maladaptive be-
havior rates in children and adolescents (Abshirini et al., 2020; Virues-​Ortega
et al., 2013). Based on well-​established applied behavior analysis (ABA) princi-
ples, TEAACH can claim extensive empirical support for its services (TEAACH
Autism Program, n.d.). T-​STEP was founded as a specialization of this method in
2017, aiming to improve transition into both postsecondary education and em-
ployment. However, at the time of this writing, no published reports on the effi-
cacy of T-​STEP are available.
In summary, relatively few university-​based autism support programs can draw
on readily available empirical evidence. We hope to inspire additional research to
validate these programs and to further investigate those which do have empirical
support. We specifically call for investigation into under-​researched methods of
support, such as living learning communities (Hurley, 2020). The landscape of
transition programs that exist, and the extant research base, suggest that supports
typically involve some combination of skills training, peer mentoring, and expe-
riential learning.

REFERENCES

Abshirini, M., Asgari, P., Heidari, A., & Naderi, F. (2021). The comparison of the effec-
tiveness of training based on the theory of mind and the method of TEACCH on the
executive functions of the children with an autism spectrum disorder in Bushehr
City. Jundishapur Journal of Chronic Disease Care, 10(1): e103465.
Adreon, D., & Durocher, J. S. (2007). Evaluating the college transition needs of individuals
with high-​functioning autism spectrum disorders. Intervention in School and Clinic,
42(5), 271–​279.
Alverson, C. Y., Lindstrom, L. E., & Hirano, K. A. (2019). High school to col-
lege: Transition experiences of young adults with autism. Focus on Autism and Other
Developmental Disabilities, 34(1), 52–​64.
Ames, M. E., McMorris, C. A., Alli, L. N., & Bebko, J. M. (2016). Overview and evalu-
ation of a mentorship program for university students with ASD. Focus on Autism
and Other Developmental Disabilities, 31(1), 27–​36.
Buescher, A. V. S., Cidav, Z., Knapp, M., & Mandell, D. S. (2014). Costs of autism spec-
trum disorders in the United Kingdom and the United States. JAMA Pediatrics,
168(8), 721–​728.
Capriola-​Hall, N. N., Brewe, A. M., Golt, J., & White, S. W. (2021). Anxiety and de-
pression reduction as distal outcomes of a college transition readiness program for
adults with autism. Journal of Autism and Developmental Disorders, 51, 98–​306.
60

60 P sychological T herapies for A dults W ith A utism

Centre for Accessible Learning. (2020). Autism mentorship initiative. https://​www.sfu.

ca/​students/​accessible-​learning/​programs-​and-​services/​autism-​mentorship-​pro-
gram.html
Chancel, R., Miot, S., Dellapiazza, F., & Baghdadli, A. (2020). Group-​based educational
interventions in adolescents and young adults with ASD without ID: A systematic
review focusing on the transition to adulthood. European Child and Adolescent
Psychiatry, 1–​21.
Children’s Learning Projects. (2014). Autism Spectrum Disorders (ASD) Mentorship
Program (AMP). https://​bebko.apps01.yorku.ca/​clp/​?page_​id=​132
Cox, B. E., Nachman, B. R., Thompson, K., Dawson, S., Edelstein, J. A., & Breeden,
C. (2020). An exploration of actionable insights regarding college students with au-
tism: A review of the literature. The Review of Higher Education, 43(4), 935–​966.
Curtin University. (2020). Autism and related conditions mentoring. https://​students.
curtin.edu.au/​experience/​mentoring/​autism-​related-​conditions/​
Dipeolu, A. O., Storlie, C., & Johnson, C. (2014). Transition to college and students with
high functioning autism spectrum disorder: Strategy considerations for school
counselors. Journal of School Counseling, 12(11), n11.
Gillespie-​Lynch, K., Bublitz, D., Donachie, A., Wong, V., Brooks, P. J., & D’Onofrio,
J. (2017, April). “For a long time our voices have been hushed”: Using student
perspectives to develop supports for neurodiverse college students. Frontiers in
Psychology, 8, 1–​14.
Hamilton, J., Stevens, G., & Girdler, S. (2016) Becoming a mentor: The impact of training
and the experience of mentoring university students on the autism spectrum. PLOS
One, 11(4):30153204.
Hillier, A., Goldstein, J., Murphy, D., Trietsch, R., Keeves, J., Mendes, E., & Queenan,
A. (2018). Supporting university students with autism spectrum disorder. Autism,
22(1), 20–​28.
Hillier, A., Ryan, J., Buckingham, A., Schena, D., Queenan, A., Dottolo, A., & Abreu,
M. (2020). Prospective college students with autism spectrum disorder: Parent
perspectives. Psychological Reports, 122(1), 88–​107.
Hillier, A., Ryan, J., Donnelly, S. M., & Buckingham, A. (2019). Peer mentoring to pre-
pare high school students with autism spectrum disorder for college. Advances in
Neurodevelopmental Disorders, 3(4), 411–​422.
Hollander, E., Kolevzon, A., & Coyle, J. T. (Eds.). (2011). Textbook of autism spectrum
disorders. American Psychiatric Publishing, Inc.
Hurley, G. (2020). Residence life accommodations for college students with autism spec-
trum disorders [Unpublished senior thesis]. Belmont University.
Maenner, M. J., Shaw, K. A., Baio, J., Washington, A., Patrick, M., DiRienzo, M.,
Christensen, D. L., Wiggins, L. D., Pettygrove, S., Andrews, J. G., Lopez, M., Hudson,
A., Baroud, T., Schwenk, Y., White, T., Rosenberg, C. R., Lee, L.-​C., Harrington, R.
A., Huston, M., . . . Dietz, P. M. (2020). Prevalence of autism spectrum disorder
among children aged 8 years—​Autism and Developmental Disabilities Monitoring
Network, 11 sites, United States, 2016. MMWR Surveillance Summaries, 69(4), 1–​12.
https://​doi.org/​10.15585/​mmwr.ss6904a1
Mazefsky, C. A., & White, S. W. (2014). Adults with autism. In F. R. Volkmar, S. Rogers,
R. Paul, & K. A. Pelphrey (Eds.), Handbook of autism and pervasive developmental
disorders (pp. 191–​211). Wiley Press.
61

University-Focused Interventions61

McDermott, N., Hartlage, A., Jackson, B., & Orlando, A. M. (2020). United States programs
for college students. College Autism Network. https://​collegeautismnetwork.org/​wp-​
content/​uploads/​2020/​10/​Nachman-​McDermott-​2020-​Autism-​College-​Programs-​
PPT-​5.28.2020.pdf
McDonough, J. T., & Revell, G. (2010). Accessing employment supports in the adult
system for transitioning youth with autism spectrum disorders. Journal of Vocational
Rehabilitation, 32(2), 89–​100.
McLeod, J. D., Meanwell, E., & Hawbaker, A. (2019). The experiences of college students
on the autism spectrum: A comparison to their neurotypical peers. Journal of
Autism and Developmental Disorders, 49(6), 2320–​2336.
Roberts, N., & Birmingham, E. (2017). Mentoring university students with ASD: a
mentee-​centered approach. Journal of Autism and Developmental Disorders, 47(4),
1038–​1050.
Roux, A. M., Shattuck, P. T., Cooper, B. P., Anderson, K. A., Wagner, M., & Narendorf,
S. C. (2013). Postsecondary employment experiences among young adults with an
autism spectrum disorder RH: Employment in young adults with autism. Journal of
the American Academy of Child and Adolescent Psychiatry, 52(9), 931–​939.
Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J.
L. (2012). Postsecondary education and employment among youth with an autism
spectrum disorder. Pediatrics, 129(6), 1042–​1049.
Siew, C. T., Mazzucchelli, T. G., Rooney, R., & Girdler, S. (2017). A specialist peer
mentoring program for university students on the autism spectrum: A pilot study.
PLoS ONE, 12(7), 1–​18.
Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-​secondary educational ac-
tivities for young adults with autism spectrum disorders during transition to adult-
hood. Journal of Autism and Developmental Disorders, 41(5), 566–​574.
Trevisan, D. A., Leach, S., Iarocci, G., & Birmingham, E. (2020). Evaluation of a peer
mentorship program for autistic college students. Autism in Adulthood, 3(2),
187–​194.
University of Massachusetts Lowell. (2018). Graduation rates. https://​www.uml.edu/​
institutional-​research/​graduation-​rates.aspx
U.S. Department of Health and Human Services. (2017). Report to Congress: Young
adults and transitioning youth with autism spectrum disorder. https://​www.hhs.gov/​
sites/​default/​files/​2017AutismReport.pdf
Van Hees, V., Moyson, T., & Roeyers, H. (2015). Higher education experiences of
students with autism spectrum disorder: Challenges, benefits and support needs.
Journal of Autism and Developmental Disorders, 45(6), 1673–​1688.
Virues-​Ortega, J., Julio, F. M., & Pastor-​Barriuso, R. (2013). The TEACCH program for
children and adults with autism: A meta-​analysis of intervention studies. Clinical
Psychology Review, 33(8), 940–​953.
Wei, X., Wagner, M., Hudson, L., Yu, J. W., & Javitz, H. (2016). The effect of transition
planning participation and goal-​setting on college enrollment among youth with
autism spectrum disorders. Remedial and Special Education, 37(1), 3–​14.
White, S. W., Elias, R., Capriola-​Hall, N. N., Smith, I. C., Conner, C. M., Asselin, S. B.,
Howlin, P., Getzel, E. E., & Mazefsky, C. A. (2017). Development of a college tran-
sition and support program for students with autism spectrum disorder. Journal of
Autism and Developmental Disorders, 47(10), 3072–​3078.
62

62 P sychological T herapies for A dults W ith A utism

White, S. W., Elias, R., Salinas, C. E., Capriola, N., Conner, C. M., Asselin, S. B., Miyazaki,
Y., Mazefsky, C. A., Howlin, P., & Getzel, E. E. (2016). Students with autism spec-
trum disorder in college: Results from a preliminary mixed methods needs analysis.
Research in Developmental Disabilities, 56, 29–​40.
White, S. W., Ollendick, T. H., & Bray, B. C. (2011). College students on the autism spec-
trum: Prevalence and associated problems. Autism, 15(6), 683–​701.
White, S. W., Smith, I. C., Miyazaki, Y., Conner, C. M., Elias, R., & Capriola-​Hall, N. N.
(2019). Improving transition to adulthood for students with autism: A randomized
controlled trial of STEPS. Journal of Clinical Child & Adolescent Psychology,
50(2), 1–​15.
63

Employment-​
Focused Interventions
C A R O L S C H A L L , S TA C I C A R R , L A U R E N AV E L L O N E ,
A N D PA U L W E H M A N ■

KEY CONSIDERATIONS

• Competitive integrated employment provides benefits to individuals

with ASD, including increased independence and socialization with
peers without disabilities.
• Competitive integrated employment should be the first option for all
individuals with ASD because of the benefits provided.
• Acquiring competitive integrated employment involves teaching the
individual with ASD marketable skills and addressing the availability of
needed supports and employer attitudes.
• There is a growing literature describing evidence-​based and promising
interventions that increase access for an individual with ASD to
competitive integrated employment.
• Employment interventions requires an understanding of the strengths,
interests, and preferences of an individual with ASD.
• Employers value their employees with ASD because of, not in spite of,
some of the positive characteristics of ASD.
• The use of applied behavior analysis (ABA) may be useful for adults with
ASD seeking or employed in competitive integrated employment.
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64 P sychological T herapies for A dults W ith A utism

RATIONALE FOR EMPLOYMENT INTER VENTION FOR

ADULTS WITH ASD

It may seem odd to include a chapter regarding employment interventions in a

book that focuses on psychological therapies for adults with ASD. After all, the
focus of many therapeutic techniques is to ameliorate the impact of a disorder
through a medical or psychological intervention. Many of the chapters in this
book provide detailed reviews and case studies to demonstrate how a particular
therapeutic technique, such as positive behavior support (see c­ hapter 8) or dialec-
tical behavior therapy (see c­ hapter 12) can support a person with ASD in learning
to deal with the challenges of disruptive behavior, depression, or neurosis.
This chapter, however, does not seek to discuss therapeutic techniques to im-
prove the symptoms of a chronic psychiatric condition, or even teach the indi-
vidual with ASD to adjust to the impact of the disorder. Instead, we think adults
with ASD seeking employment are part of an ecological system that involves
public policy, societal beliefs about disability, and the availability of supports at
work. These are all issues that lie outside the scope of the person’s individual skills
and can either help or hinder their quest to gain competitive integrated employ-
ment (CIE; Wehman et al., 2019). Thus, interventions to increase CIE among
adults with ASD must include both individual skill development and community
connections. According to the United States Workforce Innovations Opportunity
Act (WIOA; 2014), CIE is part-​or full-​time employment in a private, govern-
ment, or public business where a person with a disability:

• is compensated at or above minimum wage,

• is paid the same rate as an employee without disabilities,
• is eligible for the same level of benefits provided to employees without
disabilities,
• interacts with other persons without disabilities at the same level as other
employees, and
• is eligible for promotions at the same level as other employees
performing the same or similar work (29 U.S.C. §705, WIOA, 2014).

We know paid work is the defining activity of adulthood (Arnett, 2014; Wehman
et al., 2019). Employment provides the adult without disabilities financial, phys-
ical, and psychological benefits (Modini et al., 2016). People with disabilities also
report work as beneficial because it provides financial support, inclusion, social-
ization, and a source of identity (Akkerman et al., 2016; Heyman et al., 2016;
Kocman & Weber, 2018; Saunders & Nedelec, 2014). Finally, there is evidence
that employment is more beneficial for the young adult with ASD than remaining
in high school. Specifically, Schall, Sima, Avellone, Wehman, McDonough, and
Brown (2020) found that youth with ASD who participated in an intervention
called Project Search plus ASD Supports (PS +​ASD) and then gained employ-
ment demonstrated significantly lower support needs than an equally matched
65

Employment-Focused Interventions65

control group who remained in high school. Consequently, we consider CIE to be

a therapeutic activity for the young adult with ASD. In fact, according to public
policy and the state of our science, CIE should be the first option for every young
adult with ASD graduating from high school or postsecondary education. Thus,
before considering disability-​only services in day support programs or sheltered
work, every youth with ASD should be given every opportunity to learn the skills
and behaviors needed in CIE while getting the necessary supports to increase
their success (Schall et al., 2020; WIOA, 2014)
Unfortunately, this is not the current state of affairs for adults with ASD. Despite
the many benefits associated with CIE for adults with ASD, the acquisition of
employment remains elusive (Shattuck et al., 2011). Individuals with ASD face
significantly greater challenges transitioning to adult life than do peers without
disabilities and peers with other types of disabilities. Research indicates that many
individuals with ASD experience poor outcomes after leaving high school, espe-
cially in the acquisition of CIE (Burke et al., 2019). Out of necessity, then, this
chapter will focus on the ways for adults with ASD to access CIE for their own
ongoing growth, development, and well-​being. In particular, we focus on the in-
dividual characteristics of adults with ASD that may act as barriers to CIE and
briefly discuss the evidence regarding the use of therapeutic strategies to address
these. Then we turn our attention to the external factors that may play a significant
role in the person with ASD acquiring and maintaining CIE, specifically the im-
portance of business partnerships and interagency collaboration. Finally, we pro-
vide a selected review of evidence-​based interventions for individuals with ASD
who have high support needs and lower support needs. Each of these sections is
followed by a case study illuminating these strategies.

INDIVIDUAL FACTORS AFFECTING EMPLOYMENT

The unique characteristics of ASD can profoundly influence employment success

in positive and negative ways (Harmuth et al., 2018). Individuals with ASD may
misread the emotion of others, fail to follow social norms, lack proper hygiene,
or violate others’ personal space (Hendricks, 2010; Ohl et al., 2017). Language
and communication challenges can include improper tone, lack of eye contact,
interrupting others, asking questions in an inappropriate way, relaying infor-
mation inaccurately or incompletely, or misunderstanding instructions. These
behaviors are not only off-​putting to others but can also violate company policies
about conduct and appearance, and they can often be grounds for termination
even when the individual with ASD is performing job duties well. A recent survey
of 59 businesses reported that their employees with ASD displayed quality of work
and an overall work ethic that exceeded expected standards, but that one fifth of
their employees with ASD struggled to interact with coworkers (Scott et al., 2017).
Maladaptive behaviors can also hinder employment success for individuals
with ASD (Harmuth et al., 2018; Ohl et al., 2017). Display of physical or verbal
6

66 P sychological T herapies for A dults W ith A utism

aggression, tantrums, self-​injurious behaviors, pica, or stereotypy can pose a lia-

bility to a company if the employee or others are injured or property is damaged
as a result of problem behavior. Consequently, individuals with more challenging
behavior typically end up in environments that are less integrated with the ge-
neral community. For example, a study by Taylor and Seltzer (2011) found that
individuals with ASD who exhibited maladaptive behaviors were less likely
to gain CIE and more likely to be in segregated day activity centers (Taylor &
Seltzer, 2011).
Challenges with executive functioning (EF) mean that individuals with ASD
often have different learning needs than other employees (Bennett & Dukes, 2013;
Hendricks, 2010; Lorenz et al., 2016; Ohl et al., 2017). Evidenced-​based training
techniques, specifically effective for individuals with ASD, are often necessary to
help with overcoming impairments in working memory, problem solving, or at-
tention. For example, an individual with ASD might need checklists created for
job duties, visual schedules posted for routines, alarms or timers to cue work dura-
tion, or signs as reminders of workplace protocol. The inclusion of diagnosis-​spe-
cific supports during employment training has been shown to be highly effective
in prompting CIE outcomes. To illustrate, Wehman et al. (2019) reported a 73.4%
employment rate for young adults who received ASD-​specific supports.
Comorbid mental health disorders also negatively affect employment. Anxiety
and depression can develop or be exacerbated by job demands or the social
requirements which accompany a position. Employed adults with ASD interviewed
by Hurlbutt and Chalmers (2004) reported sentiments of anxiety and exhaustion
trying to navigate difficult social interactions while on the job. Individuals with
ASD may also be personally affected by the environmental conditions within a
job to an extent far greater than other employees. Sensitivity to sensory input is a
symptom of ASD (Centers for Disease Control and Prevention, 2020) and, subse-
quently, jobs that are noisy, crowded, bright, or involve unregulated temperatures
may be anxiety provoking to an individual with ASD. Many individuals with ASD
use pharmacological interventions to lessen the symptoms of comorbid disorders.
In a study of the health status of adults with ASD, Croen et al. (2015) found that
adults with ASD had significantly increased rates of depression, anxiety, bipolar
disorder, obsessive compulsive disorder, schizophrenia, and suicide attempts.
While medications help reduce psychiatric symptoms, they also present side
effects such as fatigue, mental cloudiness, nausea, and so forth that can negatively
affect work attendance and performance.
These characteristics may seem daunting, yet, as we have noted, there are also
strengths associated with ASD that predict success in the workplace. The presence
of social communication impariments may be a barrier to some aspects of par-
ticular employment, yet it may also be an advantage to avoid social interaction
while completing detailed repetitive tasks. In their 2014 journal article describing
two case studies, Ham and colleagues described the strengths they observed in an
employee with ASD who worked in a hospital pharmacy. Specifically, they noted
that the young man (pseudonym, Darnell) had an excellent working memory and
a strong focus on small details. They also noted his accuracy and neatness as a
67

Employment-Focused Interventions67

strength at work. These strengths are frequently recognized by employers, as they

add value to their workplaces (McDonough et al., 2020; Solomon et al., 2020;
Wright et al., 2020). While there is no doubt that the characteristics of ASD may
require individuals to receive additional supports in employment, the external
factors that influence employment are also relevant to this discussion, including
the role businesses play in hiring people with ASD and the importance of collab-
oration between agencies supporting individuals with ASD.

EVIDENCED-​B ASED EMPLOYMENT INTER VENTIONS

FOR ADULTS WITH ASD

Schall et al. (2020) identified four strongly recommended or recommended

practices, and two emerging as recommended practices based on the strength
of evidence in the research literature through a scoping review. Specifically, they
noted that PS +​ASD and supported employment (SE) are strongly recommended
based upon the research literature. In particular, PS +​ASD supports has
demonstrated significantly better employment results in two randomized
controlled trials (RCTs) for youth with significant support needs (Wehman et al.,
2014, 2019). Likewise, SE is also strongly recommended. While there have been
no RCTs for adults with ASD, there is a preponderance of high-​quality research
evidence from field-​based prospective studies reporting very high employ-
ment outcomes for individuals with ASD across the spectrum of abilities and
support needs (Schall et al., 2020). Two additional practices were identified as
recommended based upon correlational analysis of large data sets. They were
vocational rehabilitation (VR) services and high school transition services
(Schall et al., 2020). Finally, there are a few research studies using prospective
research methods that result in the emergence of two potential evidence based
practices. These are customized employment (CE) and technology supports for
work skills and schedules (Schall et al., 2020). Table 6-​1 presents these practices
with the quality of evidence provided. In the next sections, we present how these
interventions are integrated into CIE supports for adults with ASD by describing
the intervention and providing a case example.

MEETING THE EMPLOYMENT REQUIREMENTS

OF ADULTS WITH HIGH SUPPOR T NEEDS

PS +​ASD

PS +​ASD is a high school intervention that was specifically designed for

individuals with significant support needs, while SE, high school transition serv-
ices, and CE have all been successfully used for such individuals (Schall et al.,
2020). Table 6-​2 outlines the six elements that Wehman et al. (2019) described as
essential to the success of the PS +​ASD model. These elements compose much of
 68

Table 6-​1 Recommended Interventions to Increase CIE for Adults with ASD
Intervention Studies Level of Population Description
Evidence
Project SEARCH +​ • 3 RCTs Highest Youth/​young adults; significant • Final year in HS
ASD Supports impact from ASD and comorbid • Immersed in business
disorders (ID and/​or behavior • 10-​12 week unpaid internships
challenges) learning work skills
Supported • 4 prospective Very high HS graduates; spectrum of abilities • Individualized services for
Employment quasi-​experimental employment process (i.e., job search,
• 4 retrospective secondary development, training, and long-​term
data analysis support)
Vocational • 9 retrospective secondary High HS graduate with VR services; level • State VR services (job placement,
Rehabilitation Services data analysis of impact from ASD not specified training, career counseling,
diagnostic services, etc.)
High School Transition • 2 retrospective secondary data High Transition-​aged students with • Career counseling
Services analysis (national data sets) ASD; level of impact from ASD not • Employment experience in HS
specified
Customized • 1 retrospective secondary data Promising Adults with ASD referred for CIE • Discovery Process
Employment analysis (agency data) services; spectrum of abilities • Job created to meet employer needs/​
job seeker strengths
Technology for • 1 prospective RCT (virtual Promising Adults with ASD seeking • Teach interview skills
Skill-​building/​ reality interviewing) employment (study 1) • Feedback via virtual reality
Organizational • 1 prospective RCT (personal Employed adults with ASD/​ • Visual task analyses, prompts, and
Supports digital assistant) comorbid intellectual disability navigation tools
(study 2)

Source: Schall et al., 2020.

Note: High school (HS), intellectual disability (ID), randomized controlled trial (RCT), vocational rehabilitation (VR)
69

Employment-Focused Interventions69

Table 6-​2 Six Elements of PS +​ASD Supporting CIE

Element Description Key Components
Internships Time limited, unpaid, • Repeated practice of work skills and
educationally oriented professional behavior in real job settings
work experiences in a • Shape skills to be more complex
real business setting. • Capitalize on the individual’s strengths,
interests, and preferences
• Train co-​workers/​supervisors about the
social behavioral needs of intern
Systematic Use of applied behavior • Task analyses to teach work behaviors
Instruction analysis for skill • Behavioral rehearsal of social
development within communication skills
workplace/​focus on • Prompting hierarchies
development of social • Generalization of skills
communication skills • Functional behavior assessment for
and successful work challenging behavior/​ multi-​component
behaviors. behavior intervention plans
Personalized Participants try out • Match intern strengths, preferences, and
Vocational various tasks and assess interests to business needs
Assessment their success, desire to • Customize internship to learn more about
perform the task, and social behavioral needs of intern
amount of support they • Share information gained with
require to learn the task. collaborators/​stakeholders
• Assessments include tangential
issues affecting employment (e.g.,
transportation, family support, personal
independence)
Seamless Services provided • Multiple funding sources and concurrent
Transition to by school, VR service provision by multiple agencies
Adult Services services organization, (school, VR, developmental disability
developmental disability agency)
agency, with strong • Avoids waiting lists by starting adult
family/​ individual services before end of school services
involvement.
Development Showcase skills in place • Video résumés show individuals
of Résumé of traditional interview. completing real job tasks in a work
environment
• Working interviews; individuals performs
job for a short period of time under the
supervision of their employment support
provider
• Collection of recommendation letters
from internship supervisors and mentors
(continued )
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70 P sychological T herapies for A dults W ith A utism

Table 6-2 Continued

Element Description Key Components
Focus on Internships in real • Teach skills that are valued by the
current community businesses business and are completed by employees,
employable ensure that the person not by volunteers
skills in home is learning marketable • Intern learns real skills needed in the
community skills. business
• Teach skills that are marketable in the
economy of the individual’s community
• Focus on meeting the business’ needs
while they help the intern learn skills
• Encourage internship sites to consider
hiring successful interns

Source: Wehman et al., 2020.

the PS +​ASD supports model. To date, this is the only packaged intervention with
efficacy confirmed by two RCTs.

Supported Employment

SE is an individualized service during which a trained employment specialist

assists a job seeker with a severe disability gain and maintain employment. For
the purposes of this chapter, we do not consider supported employment to in-
clude group models, such as enclaves or work crews. Instead, we view SE as an
individualized service designed to assist people with disabilities gain CIE. The
main value of SE is to employ then train. This is a critical component of SE, as
the assumption is that even those with significant impact from disabilities can
both learn job skills and receive employment support to sustain their employment
(Wehman et al., 2019). There has been very high-​quality research documenting
the efficacy of SE for individuals with ASD. Specifically, higher employment
outcomes have been reported in both prospective quasi-​experimental and retro-
spective data analysis of seven different teams of researchers in different countries
(Brooke et al., 2018; Howlin et al., 2005; Lynas, 2014; McLaren et al., 2017; Schall
et al., 2015; Wehman et al., 2012, 2016). This provides compelling evidence that
SE is an evidence-​based practice that results in higher CIE outcomes for adults
with ASD.

Customized Employment

CE matches the unique strengths, interests, and support needs of the job candidate
with the identified demands of the employer (Smith et al., 2015; Wehman et al.,
71

Employment-Focused Interventions71

2018; WIOA, 2014). Rather than fitting the job seeker into an existing job, CE
involves developing a job that did not previously exist to meet the business’ needs
and the job seeker’s strengths (Brooke et al., 2018; Smith et al., 2015; Wehman
et al.¸ 2016, 2020). CE has been implemented with ASD supports as well, in-
cluding (a) developing a work schedule with consistent structure, (b) teaching so-
cial communication skills and work expectations with applied behaviour analysis
(ABA), (c) using visual supports to ensure consistent independent performance
of work and social skills, and (d) implementing behavior supports (Wehman et al.,
2012). CE provides a very suitable method for those with ASD and significant
support needs. The highly individualized nature of the CIE outcome allows em-
ployment specialists to tailor the job to meet the needs of the business and the
strengths, interests, and preferences of the employee.

CASE STUDY

Jamal is a 28-​year-​old man who was diagnosed with “classic autism” as a 6-​year-​
old child. He displays challenging behavior, including flapping his hands and
spinning in a circle. On occasion, he will yell, push on his chin, and bite his arm.
He will also run from those around him. He is not able to read or write and has
no mathematical skills. His verbal communication is also significantly impacted.
Mostly, he speaks in one and two word phrases, such as “go home” and “eat.”
Jamal’s employment specialist, Darius, used CE to negotiate a job for Jamal at
the hospital’s off-​site sterilization department. The job required Jamal to move 2
meter tall by 1 meter wide (6.5 feet by 3 feet) rolling case carts into the sterilization
unit and push buttons in a specific sequence to sterilize the instruments on the
cart. While waiting for the unit to finish its sterilization routine, Jamal could pace,
flap, and make noise. The employer also provided a quiet private space where he
could take a break if he got too hot or became frustrated. Jamal earns $9.50 an
hour (31% higher than minimum wage in his location), and works between 20
and 30 hours weekly. He is very reliable and hates to miss work.
Since Jamal has been working in central sterile, all of his co-​workers have
made errors when placing case carts in the sterilizing unit at one time or an-
other—​all, that is, except Jamal. Because of his attention to detail and his in-
sistence that he complete repetitive tasks in precisely the same order every day,
Jamal has never made an error when putting a case cart into the sterilization
machine. Jamal is able to sign in and out of work with his employee badge,
and he is also independent occupying his time while waiting for his parents.
Darius is skilled in using ABA techniques to teach new skills and to analyze the
function of Jamal’s behavioral challenges if they arise or accelerate. Further, if
needed, Darius is able to contact his supervisor and request additional support
from a Board Certified Behavior Analyst to assist him. Without the availability
of behavior analytic services, Jamal’s success would be compromised by his ep-
isodic behavior challenges.
72

72 P sychological T herapies for A dults W ith A utism

MEETING THE EMPLOYMENT REQUIREMENTS

OF ADULTS WITH LOWER SUPPOR T NEEDS

Adults with ASD and lower support needs also present unique challenges when
acquiring and maintaining CIE. They have high verbal intelligence and strengths
in academics, and they often excel in school and attend college. They may
struggle when trying to obtain or maintain employment due to impairments
in social skills, problem solving, and executive functioning. Unfortunately,
adults with lower support needs often do not “meet requirements” for sup-
port from vocational rehabilitation services and are left to fend for themselves
in an environment that may not understand these challenges or offer support
or accommodations to make the job successful. In addition, many adults with
lower support needs do not disclose to their employer that they have autism
and require accommodations. This often leads to misunderstanding, missed
deadlines, and termination. This does not have to be the case. Through targeted
interventions, successful postsecondary education, and the support of voca-
tional rehabilitation services, adults with ASD who have lower support needs
can obtain competitive employment in jobs of their choosing that can lead to
successful careers.

Postsecondary Education

Enrollment for this population is lower than that of many students with other
disabilities (Newman et al. 2011; Roux et al. 2015; Shattuck et al. 2012). That
said, recent research describing employment outcomes for postsecondary
education (PSE) program participants is positive, with preliminary results
representing high employment rates across disciplines (Moore & Schelling,
2015). Young adults with ASD can participate in PSE through traditional
programs such as community college, vocational and career training, and
4-​year universities. Time spent in PSE can offer instruction and practice in
skills necessary for successful employment. Attending classes requires many
skills that parallel employment, including self-​determination, time manage-
ment, and social skills, as well as managing stress anxiety in a fast-​paced en-
vironment. A student seeking support from the disability services office can
receive an array of supports and accommodations that can prove to be useful
in the college setting and beyond. Thankfully, the availability of personal tech-
nology can be a way to address many of the challenges faced by adults with
autism without making them stand out from their peers. Electronic organizers,
alarms, timers, calendars, and other apps that can be downloaded to smart
phones and computers are able to assist all individuals with (and without)
disabilities to manage their time, assignments, routines. This addresses those
EF tasks that are often the culprit of unsuccessful employment. In addition, it
is important to consider the social aspect of PSE.
73

Employment-Focused Interventions73

Cognitive Rehabilitation

Cognitive rehabilitation (CR) is a therapeutic approach designed to improve cog-

nitive functioning for individuals who experience cognitive deficits. It includes
a variety of evidence-​based therapy methods that retrain or alleviate problems
caused by impairment in attention, visual processing, language, memory, rea-
soning, problem solving, and executive functions. Cognitive rehabilitation
includes interventions that are used to reinforce or reestablish previously learned
patterns of behavior or to establish new compensatory mechanisms for ­cognitive
processes. There has been extensive research to support the positive effect of CR in
individuals with traumatic brain injury (TBI; Rumrill et al., 2016). More ­recently,
researchers have begun to consider CR as a promising intervention for those with
ASD. The desired outcome of cognitive rehabilitation is an improved quality of
life including an increased ability to be actively engaged at home, work, and the
community. Several therapies fall under the category of “cognitive rehabilitation”
for adults with ASD, including the following promising practices: virtual reality
training and social skills training.

Technology and the Use of Virtual Reality

The emerging technology of computerized instruction has led to an influx of treat-

ment strategies and protocols internet-​based and virtual reality-​based treatment
strategies and protocols that have demonstrated positive results in youth and
adults with ASD (Smith et al., 2020; Walsh et al., 2017). Virtual reality provides
an immersive experience into a simulated environment and stimulates different
senses in the process. Adults with ASD, regardless of their support needs, often re-
quire systematic instruction that can be practiced frequently to build confidence
and fluidity of the skill. Virtual reality provides a safe, controllable environment
to practice these skills repeatedly. This application can target a variety of skills in-
cluding specific job tasks, routines, communication, and social skills.

Vocational Rehabilitation Services

Vocational rehabilitation (VR) services for adults with ASD clearly results in suc-
cessful employment (Sung et al., 2015). Research demonstrates that individuals
with ASD often succeed in the workplace if transition and vocational rehabilita-
tion services are tailored to meet their unique and individual needs (McDonough
& Revell, 2010). Unfortunately, many individuals with lower support needs fail
to meet the requirements to obtain these services, and thus are excluded from
services. Of those who do receive services, many withdraw from the VR process
because some traditional vocational rehabilitation practices are not only ineffec-
tive for people with ASD, but also actively distressing to them. Given the great
74

74 P sychological T herapies for A dults W ith A utism

variation in how ASD is experienced, VR providers must consider the unique

interests, goals, and capabilities. The importance of a needs assessment in de-
veloping customized strategies to meet these unique needs is paramount. These
assessments can lead to the design of engaging interventions, utilizing different
processes and models to understand the social environment and job context.
Some of the same strategies listed previously in PSE can be adapted to address the
challenges faced on the job.

CASE STUDY

Amir is a 24-​year-​old man with a diagnosis of autism. He graduated from high

school with a standard diploma while receiving support from his IEP team and
special education. Amir attended a 4-​year university to pursue a degree in history
with a minor in art. While at the university, he received services from the student
accessibility office to help with accommodations. Additionally, he and his mother
contacted their local vocational rehabilitation office to seek support in finding
employment while in college. He had some volunteer experience, but no paid
employment. The case manager, Amir, and his mother explored his strengths and
identified his support needs. A list of strengths emerged including a passion for
history and historical events, attention to detail, and the ability to speak effectively
about these topics. Through the help of his case manager, he was able to discuss
tasks that he found difficult in high school, college, and potentially in employ-
ment. Through the support of an employment specialist, Amir learned self-​advo-
cacy and effective strategies and tools to maintain organization, and he developed
more confidence. As a result, he joined an art club on campus and was able to
secure hourly work at a local university-​affiliated historical society, giving guided
tours through a museum. Patrons found him to be so knowledgeable and profes-
sional that the museum staff asked him to increase his hours over the summers
and guaranteed him a 30-​hour per week position after graduation. Amir is very
successful at work and has expanded his social network beyond the art club to
include a group who does war reenactments. He finds great joy in both his work
and social opportunities.

CONCLUSION

The purpose of this chapter was to describe the research evidence and discuss the
implementation of employment interventions designed to increase adults’ access to
CIE. As we have noted, CIE may act as a protective factor from some of the ill effects
that individuals with ASD face in adulthood when they are without daily structure.
Specifically, we have found that adults with ASD who gain CIE continue to learn
skills, are not isolated, and gain social interaction opportunities from working with
their coworkers without disabilities. Future research should explore the benefits
gained by adults with ASD in CIE to assess the degree to which it is a protective
75

Employment-Focused Interventions75

factor against isolation, plateauing of growth, depression, and anxiety disorders.

Further, access to services such as ABA in the work place is not yet widespread.
This is also something that should be addressed through public policy and funding.
Nevertheless, people like Jamal and Amir have talents and gifts. They benefit from
and provide benefit to their communities through their employment. It is beyond
time for us as a society to take the message of inclusion to the workplace. We need
these workers to enhance our own communities and workplaces.

REFERENCES

Akkerman, A., Janssen, C. G. C., Kef, S., & Meininger, H. P. (2016). Job satisfaction of
people with intellectual disabilities in integrated and sheltered employment: An ex-
ploration of the literature. Journal of Policy and Practice in Intellectual Disabilities,
13(3), 205–​216.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental
disorders (5th ed.). https://​doi.org/​10.1176/​appi.books.9780890425596
Arnett, J. J. (2014). Emerging adulthood: The winding road from the late teens through the
twenties. Oxford University Press.
Bennett, K. D., & Dukes, C. (2013). Employment instruction for secondary students
with autism spectrum disorder: A systematic review of the literature. Education and
Training in Autism and Developmental Disabilities, 48(1), 67–​75.
Brooke, V., Brooke, A. M., Schall, C., Wehman, P., McDonough, J., Thompson, K., &
Smith, J. (2018). Employees with autism spectrum disorder achieving long-​term
employment success: A retrospective review of employment retention and inter-
vention. Research and Practice for Persons with Severe Disabilities, 43(3), 181–​193.
Burke, M. M., Waitz-​Kudla, S. N., Rabideau, C., Taylor, J. L., & Hodapp, R. M. (2019)
Pulling back the curtain: Issues in conducting an intervention study with transition-​
aged youth with autism spectrum disorders and their families. Autism, 23(2),
514–​523.
Centers for Disease Control and Prevention. (2020). Diagnostic criteria, Autism Spectrum
Disorder (ASD). https://​www.cdc.gov/​ncbddd/​autism/​hcp-​dsm.html
Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015).
The health status of adults on the autism spectrum. Autism: The International Journal
of Research and Practice, 19(7), 814–​823.
Ham, W., McDonough, J., Molinelli, A., Schall, C., & Wehman, P. (2014). Employment
supports for young adults with ASD: Two case studies. Journal of Vocational
Rehabilitation, 40(2), 117–​124.
Harmuth, E., Silletta, E., Bailey, A., Adams, T., Beck, C., & Barbic, S. P. (2018). Barriers
and facilitators to employment for adults with autism: A scoping review. Annals of
International Occupational Therapy, 1(1), 31–​40.
Hendricks, D. (2010). Employment and adults with autism spectrum disorders: Challenges
and strategies for success. Journal of Vocational Rehabilitation, 32(2), 125–​134.
Howlin, P., Alcock, J., & Burkin, C. (2005). An 8 year follow-​up of a specialist supported
employment service for high-​ability adults with autism or Asperger syndrome.
Autism, 9(5), 533–​549.
76

76 P sychological T herapies for A dults W ith A utism

Hurlbutt, K., & Chalmers, L. (2004). Employment and adults with Asperger syndrome.
Focus on Autism and Other Developmental Disabilities, 19(4), 215–​222.
Heyman, M., Stokes, J. E., & Siperstein, G. N. (2016). Not all jobs are the same: Predictors
of job quality for adults with intellectual disabilities. Journal of Vocational
Rehabilitation, 44(3), 299–​306.
Kocman, A., & Weber, G. (2018). Job satisfaction, quality of work life and work motiva-
tion in employees with intellectual disability: A systematic review. Journal of Applied
Research in Intellectual Disabilities, 31, 1–​22.
Lorenz, T., Frischling, C., Cuadros, R., & Heinitz, K. (2016). Autism and overcoming job
barriers: Comparing job-​related barriers and possible solutions in and outside of
autism-​specific employment. PLOS ONE, 11(1), Article e0147040.
Lynas, L. (2014). Project ABLE (Autism: building links to employment): A specialist
employment services for young people and adults with autism spectrum condition.
Journal of Vocational Rehabilitation, 41(1), 13–​21.
McDonough, J., Ham, W., Brooke, A., Wehman, P., Wright, T., Godwin, J. C., Junod, P., &
Hurst, R. (2020). Health care executive perceptions of hiring and retention practices
of persons with disabilities: Results from executive focus groups. Rehabilitation
Counseling Bulletin, 64(2), 75–​85.
McDonough, J. T., & Revell, G. (2010). Accessing employment supports in the adult
system for transitioning youth with autism spectrum disorders. Journal of Vocational
Rehabilitation, 32(2), 89–​100.
McLaren, J., Lichtenstein, J. D., Lynch D., Becker, D., & Drake, R. (2017). Individual
placement and support for people with autism spectrum disorders: A pilot program.
Administration and Policy in Mental Health, 44(3), 365–​373.
Modini, M., Joyce, S., Mykletun, A., Christensen, H., Bryant, R. A., Mitchell, P. B., &
Harvey, S. B. (2016). The mental health benefits of employment: Results of a sys-
tematic meta-​review. Australasian psychiatry: bulletin of Royal Australian and New
Zealand College of Psychiatrists, 24(4), 331–​336.
Moore, E. J., & Schelling, A. (2015). Postsecondary inclusion for individuals with an in-
tellectual disability and its effects on employment. Journal of Intellectual Disabilities,
19, 130–​148.
Newman, L., Wagner, M., Knokey, A.-​M., Marder, C., Nagle, K., Shaver, D., & Wei, X.
(2011). The post-​high school outcomes of young adults with disabilities up to 8 years
after high school: A report from the National Longitudinal Transition Study-​2 (NLTS2)
(NCSER 2011–​3005). SRI International. https://​ies.ed.gov/​ncser/​pubs/​20113005/​
pdf/​20113005.pdf
Ohl, A., Grice Sheff, M., Small, S., Nguyen, J., Paskor, K., & Zanjirian, A. (2017).
Predictors of employment status among adults with autism spectrum disorder.
Work, 56(2), 345–​355.
Roux, A. M., Shattuck, P. T., Rast, J. E., Rava, J. A., & Anderson, K. A. (2015). National
autism indicators report: Transition into young adulthood. A. J. Drexel Autism
Institute, Drexel University.
Rumrill, P., Elias, E., Hendricks, D. J., Jacobs, K., Leopold, A., Nardone, A., Sampson,
E., Scherer, M., Stauffer, C, & McMahon, B. T. (2016). Promoting cognitive support
technology use and employment success among postsecondary students with trau-
matic brain injuries. Journal of Vocational Rehabilitation, 45(1), 53–​61.
7

Employment-Focused Interventions77

Saunders, S. L., & Nedelec, B. (2014). What work means to people with work disability: A
scoping review. Journal of Occupational Rehabilitation, 24, 100–​110.
Schall, C., Sima, A. P., Avellone, L., Wehman, P., McDonough, J., & Brown, A. (2020).
The effect of business internships model and employment on enhancing the in-
dependence of young adults with significant impact from autism. Intellectual and
Developmental Disabilities, 58(4), 301–​313.
Schall, C., Wehman, P., Avellone, L., & Taylor, J. P. (2020). Competitive integrated em-
ployment for youth and adults with autism: Findings from a scoping review. Child
and Adolescent Psychiatric Clinics of North America, 29(2), 373–​397.
Schall, C. M., Wehman, P., Brooke, V., Graham, C., McDonough, J., Brooke, A., Ham, W.,
Rounds, R., Lau, S., Allen, J. (2015). Employment interventions for individuals with
ASD: The relative efficacy of supported employment with or without prior Project
SEARCH training. Journal of Autism and Developmental Disorders, 45, 3990–​4001.
Scott, M., Jacob, A., Hendrie, D., Parsons, R., Girdler, S., Falkmer, T., & Falkmer, M.
(2017). Employers’ perception of the costs and the benefits of hiring individuals
with autism spectrum disorder in open employment in Australia. PLOS ONE, 12(5),
Article e0177607.
Shattuck, P. T., Roux, A. M., Hudson, L. E., Taylor, J. L., Maenner, M. J., & Trani, J. F.
(2012). Services for adults with an autism spectrum disorder. Canadian Journal of
Psychiatry. Revue Canadienne de psychiatrie, 57(5), 284–​291.
Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011). Post
high school service use among young adults with autism. Archives of Pediatric and
Adolescent Medicine, 165, 141–​146.
Smith, T. J., Dillahunt-​Aspillaga, C., & Kenney, C. (2015). Integrating customized em-
ployment practices within the vocational rehabilitation system. Journal of Vocational
Rehabilitation, 42, 201–​208.
Smith, M. J., Pinto, R. J., Dewalt, L., Smith J. D., Sherwood, K., Miles, R., Taylor, J.,
& Hume, K. (2020). Using community-​engaged methods to adapt virtual reality
job-​interview training for transition-​age youth on the autism spectrum. Research in
Autism Spectrum Disorder, 71 Article # 101498. ​
Solo​mon, C. (2020). Autism and employment: Implications for employers and adults
with ASD. Journal of Autism and Developmental Disorders, 50, 4209–​4217.
Sung, C., Sanchez, J., Kuo, H. J., Wang, C. C., & Leahy, M. J. (2015). Gender differences in
vocational rehabilitation service predictors of successful competitive employment
for transition-​aged individuals with autism. Journal of Autism and Developmental
Disorders, 45, 3204–​3218.
Taylor, J. L. & Seltzer, M. (2011). Employment and post-​secondary educational activities
for young adults with autism spectrum disorders during the transition to adult-
hood. Journal of Autism and Developmental Disorders, 41(5), 566–​574.
Walsh, E., Holloway, J., McCoy, A., & Lyndon, H. (2017). Technology-​aided intervention
for employment skills in adults with autism spectrum disorder: A systemic review.
Review Journal of Autism and Developmental Disorders, 4, 12–​25.
78

78 P sychological T herapies for A dults W ith A utism

Wehman, P., Brooke, V., Brooke, A. M., Ham W., Schall, C., McDonough, J., Lau, S.,
Seward, H., & Avellone, L. (2016). Employment for adults with autism spectrum
disorders: A retrospective review of a customized employment approach. Research
in Developmental Disabilities, 53–​54, 61–​72.
Wehman, P., Iwanaga, K., Sima, A., McDonough, J., Chan, F., Brooke, A., Ham, W.,
Godwin, J., & Junod, P. (2020). Assessing attitudes of hospital staff toward working
with co-​workers with disabilities: A preliminary study. Journal of Rehabilitation,
86(4), 14–​21.
Wehman, P., Lau, S., Mollinelli, A., Brooke, V., Thompson, K., Moore, C., & West,
M. (2012). Supported employment for young adults with autism spectrum dis-
order: Preliminary data. Research and Practice for Persons with Severe Disabilities,
27(3), 160–​169.
Wehman, P. H., Schall, C. M., McDonough, J., Kregel, J., Brooke, V., Molinelli, A., Ham,
W., Graham, C. W., Riehle, J. E., Collins, H. T., & Thiss, W. (2014). Competitive
employment for youth with Autism Spectrum Disorders: Early results from a
randomized clinical trial. Journal of Autism and Developmental Disorders, 44,
487–​500.
Wehman, P., Schall, C., McDonough, J., Sima, A., Brooke, A., Ham, W., Whittenburg, H.,
Brooke, V. Avellone, L, & Riehle, E. (2020). Competitive employment for transition-​
aged youth with significant impact from autism: A multi-​site randomized clinical
trial. Journal of Autism and Developmental Disorders, 50(6), 1882–​1897.
Wehman, P., Taylor, J., Brooke, V., Avellone, L., Whittenburg, H., Ham, W., Molinelli B.,
A., & Carr, S. (2018). Toward competitive employment for persons with intellectual
and developmental disabilities: What progress have we made and where do we need
to go. Research and Practice for Persons with Severe Disabilities, 43(3), 131–​144.
Workforce Innovation and Opportunity Act of 2014, Pub. L. No.113-​128 128 Stat. 1425
(2014). https://​w ww.govinfo.gov/​content/​pkg/​PLAW-​113publ128/​p df/​PLAW-​
113publ128.pdf
Wright, T., Wehman, P., McDonough, J., Thomas, K., Ochrach, K., Thomas, K., Brooke,
A., Ham, W., Godwin, J. C., & Junod, P. (2020). Charity-​oriented versus human
resource-​oriented perspectives: Investigating staff understandings of employment
practices for persons with disabilities. Journal of Applied Rehabilitation Counseling,
51(2), 146–​167.
79

Social Skills Interventions

CYNTHIA I. D’AGOSTINO AND FRANCISCO M. MUSICH ■

KEY CONSIDERATIONS

• An adequate initial examination is important to conceptualize the case.

• Selection of social skills techniques or teaching and training programs
will depend on the individual profile, needs, and hierarchy of priorities
of each patient.
• Social skills interventions can be delivered via an individual or group
approach and can include behavioral and cognitive techniques.
• Group social skills approaches can be effective for individuals who are
interested in and motivated to improve and develop their social skills.
• It is important to take into account and to adapt interventions to the
individual and cultural variables of each patient.

OVER VIEW

Communication, social interaction, and social skills are affected in autism spec-
trum disorders (ASD) from an early age and continue to be a challenging area
for many individuals throughout their lives, regardless of their adaptive beha-
vior or intellectual capabilities (Gaus, 2007, 2011; Howlin & Moss, 2012; Lord
et al., 2020).
Transition into adulthood typically results in new challenges, contexts, and
demands for social skills. For some adults, social requirements increase, as do
the parameters within which social behaviors are observed, understood, and,
sometimes, judged by others. For others, requirements decrease due to no longer
being in mandated education but may result in social isolation. This increase in
demands for the first group is often inversely proportional to the services and sup-
port available for both groups of patients.
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80 P sychological T herapies for A dults W ith A utism

It is important to consider that some individuals with comorbid intellectual

disability will have a number of specific social skill challenges (Walsh et al., 2018;
Wilkins & Matson, 2009), and others without intellectual disabilities will present
more subtle impairments, but that does not mean that they will have less diffi-
culty or distress (Spain & Blainey, 2015). Nonetheless, there are successful and
well-​adapted cases of social functioning of adults with ASD, but, for many, core
difficulties in communication and social interaction persist in adulthood (Howlin
& Moss, 2012; Laugeson & Ellingsen, 2014; Lord et al., 2020; White et al., 2010).

The Construct of Social Skills

The social skills construct lacks a universal general theoretical framework, both
in assessment and training (Baker, 2003). Social skills can be defined as behaviors
that are negatively or positively reinforced and the possibility of not performing
behaviors that are punished or extinguished. It also implies behaviors in which
a person can interpersonally express positive and negative feelings without the
loss of social reinforcement (Caballo, 2002; Kelly, 2010). Social skills are context-​
and culture-​dependent behaviors that emerge in early life, and many nonautistic
individuals learn these skills more adeptly and generalize them more intuitively.
This is not the case for individuals with ASD (Spain & Blainey, 2015; White
et al., 2013).

Assessment of Social Performance

The first step in choosing and designing a treatment is a thorough clinical assess-
ment (White et al., 2013). Substantial heterogeneity can be found in assessment
instruments for social skills, social cognition, and autistic symptomatology for
adults as well as children. This methodological heterogeneity in the assessment
is also present in research and clinical literature and, to a degree, this is also what
makes systematic reviews and generalization of research findings difficult (Spain
& Blainey, 2015; White, 2010, 2013).
The assessment should incorporate a combination of different methods, in-
cluding a robust and comprehensive evaluation of autistic symptomatology with
standard and self-​report measures, intellectual capabilities, cognitive functioning,
social cognition, and social skills, including verbal and nonverbal communication
skills (see Figure 7-​1). Often, measurements are not only used in the assessment
but also in evaluating progress and posttreatment outcomes. During the assess-
ment, it is important to explore the presence of alexithymia, self-​awareness (Frith
& Happé, 1999; Happé, 2003; Williams, 2010; Williams & Happé, 2009), strengths
and weaknesses, social motivation, presence of camouflaging, and coping re-
sources. It is essential to know the history and trajectory of the individual’s so-
cial context, their support networks, and previous positive or negative interaction
experiences with peers that might have led to rejection, teasing or ostracism
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Social Skills Interventions81

High motivation/Support PEERS® or Social

Caregivers(SC)/No Skills Group
comorbidities(NC)/ Interventions (SSGI)
Available services

What to assess? Also consider

High motivation/No SC/NC PEERS® or SSGI
Available services without caregivers

Autistic symptomatology Gender identity,

Intellectual capabilities People they like High motivation/SC/NC/ PEERS®/SSGI
Adaptative behavior Interest in friendships No romantic Exclude dating
Social functioning interest/Available services lessons
Romantic interest
Cognitive functioning Age of diagnosis
Social cognition Previous treatments
Social skills High motivation/No SC/ Psychotherapy focus
Cultural factors NC/No available services
Verbal and nonverbal on SSGI protocol
Country and language or groups
communication skills Access to services
Alexithymia Timing for Social
Self-awareness Psychotherapy focus
Skills Interventions Low motivation/No SC/
on SSI protocol
Comorbidities (SSI) NC/Needs in specific
adapted to specific
Strengths and weaknesses Patient’s goals and contexts
context
Social motivation needs in SSI in daily
Camouflaging life Low motivation/No SC/ Psychotherapy assess
Coping resources Social trajectory Moderate to severe priorities and need
Social opportunities comorbidities Treat comorbidities
Support networks
Low motivation/Previous Psychotherapy/groups
negative experiences/ with common interest/
Isolation Generate new positive
social experiences

High motivation/SC and ID PEERS® or SSGI

slower and adapted

Psychotherapy and SSI

Low motivation/SC and ID individual approach
adapted

Figure 7-​1 Assessment and Decision Making in Treatment Design

A
Figure 7-​1 is based on both clinical experience and research.
B
Strategies and programs are suggestions, not research-​informed mandates, as they do
not take into account the full case conceptualization.

(White et al., 2010). Also, it is essential to consider gender identity, people with
whom they enjoy spending their free time, and with whom they need or wish
to expand their social life and skills, and their romantic or intimate interest if
present. Furthermore, the age of ASD diagnosis and history of previous and pre-
sent treatments is relevant, as this can provide clinicians with an understanding
of whether social skills have been previously taught but not fully acquired, or if
they need to be learned for the first time. This would also address performance
or acquisition impairments (Bellini, 2008) and would be key in selection of the
subsequent techniques.
Other key issues to assess include cultural factors, customs, and social codes
in each individual’s environment, geographical context, country, language; access
to available specialized support services and general and mental health services;
opportunities in each community; housing; access to university education and
employment with and without support; and access to culture, sports, and leisure.
These factors will help form an idea of the social context of the individual and the
specific curricular needs in the design of the treatment option.
It is also crucial to assess physical and mental health comorbidities, in particular
the co-​occurrence of anxiety, which is multifaceted in ASD. It can be challenging
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82 P sychological T herapies for A dults W ith A utism

to determine if the anxiety is primary or secondary to core impairments and might

affect the treatment design (White et al., 2010). Anxiety should be addressed, if
present, and a multimodal approach might be necessary (White et al., 2013). Social
anxiety is reported to be present in many adults with ASD and research indicates
that most adults with ASD and without intellectual disabilities are aware of their
social struggles (Maddox & White, 2015). Moreover, social anxiety has been re-
ported to be related to self-​reported hostility in adults with ASD (White et al.,
2012), and this feasibly plays a key role in case conceptualization. In addition,
mood disorders and posttraumatic stress disorder (PTSD) are prevalent in adults
with ASD (Rumball et al., 2020), and might affect social performance or even be
caused by social events (Haruvi-​Lamdan et al., 2020). Moreover, comorbidities
can interfere and modulate outcomes in social skills interventions and should
be assessed, addressed, and considered in the treatment design. Assessing if the
timing for the intervention in social skills is the best or if other priorities are more
urgent for the individual is necessary.
We believe that assessing and taking into account the patient’s goals regarding
their social skills treatment is relevant, regardless of the impression of the clinician
or others in the patient’s life. The rationale for this is that in our clinical experience,
on average, patients tend to be more engaged in the treatment if they feel that they
are working toward meaningful goals of their own. Frequently, addressing the
patient’s goal is a starting point in the treatment, and as this progresses, so do
opportunities of including different goals. Also, goals might change as their con-
fidence, knowledge, and skills increase during therapy.
Finally, although not always available, it is recommended to include reports
from significant people in the adult’s life, since they can provide very valuable and
ecologically accurate information of our patient social performing.

Social Skills Interventions for Individuals With

ASD: Techniques

Most research studies have focused on social skills interventions for children and
adolescents, and to a lesser extent on people with intellectual disabilities (White
et al., 2007), but not on adults with ASD without intellectual disabilities (Bishop-​
Fitzpatrick et al., 2013; Spain & Blainey, 2015).
Generally, manualized programs have in common the selection of a series of
objectives, and these are usually limited in time and in number of sessions. Also,
they provide didactic instructions, encourage behavioral rehearsals, role play,
assignments, review, and feedback (Baker, 2003; Bellini et al., 2008; Gresham et al.,
2001; Reichow et al., 2013; Spain & Blainey, 2015; White et al., 2007, 2010, 2012).
Techniques used in teaching social skills can be multiple and can be combined in
different ways in manualized programs or in individual interventions (Baker, 2003;
Bellini et al., 2008; Winner & Crooke 2009). Some will be focused on performing
specific behaviors, verbal and nonverbal, and other techniques will be focused
on social cognition, social understanding, and perspective taking (White, 2012).
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Social Skills Interventions83

Table 7-​1 Strategies and Interventions for Social Skills Training

Intervention Type Techniques
Behavior and performance • Didactic instructions
techniques • Discrete trials
• Chaining
• Prompting
• Modeling
• Fading
• Behavior rehearsals
• Role plays
• Video-​modeling and video self-​modeling
• Practice assignments
• Assignments review and feedback
• Incidental teaching
Social cognition, perspective • Social narratives
taking and hidden curriculum • Social stories
• Picture cognitive rehearsal
• Comic strip conversations
• Video analysis
• Perspective taking exercises
• Mind reading training
• Social autopsy
• Social problem solving
• Self-​awareness strategies
• Hidden curriculum exercises

Various techniques are often reported in the literature (see Table 7-​1), such as so-
cial narratives, social stories (Gray et al., 1993), and cognitive essays with drawings
(Gray, 1994). Other techniques address social cognition, teaching of “the hidden
curriculum” (Myles & Simpson, 2001), and perspective taking (Winner & Crooke,
2011). Similarly, techniques focused on the performance of specific behaviors
are reported (White, 2012), including discrete rehearsal, direct and didactic in-
struction, modeling, chaining, fading, prompting, role play, and behavioral re-
hearsal (Baker, 2003; Bellini, 2008; Laugeson, 2010, 2017; Tincani & Bondy, 2015).
For many individuals with ASD and moderate to severe intellectual disabilities,
teaching will be mostly through behavioral techniques, discrete rehearsal, video
modeling (Bellini, 2008; Tincani & Bondy, 2015; Walsh et. al., 2018), and adapting
techniques for more able individuals with a slower pace and visual aids.

Evidence-​Based Group Interventions Available

for Adults With ASD

A recent systematic review of group social skills found that, while five studies
showed preliminary evidence, interventions were effective for improving know-
ledge and understanding of social skills rather than for improving them, and they
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84 P sychological T herapies for A dults W ith A utism

were very varied in content and objectives (Spain & Blainey, 2015). However, the
samples were highly heterogeneous in size, and methodologies and were not al-
ways available in a manualized format or accessible for clinicians. Availability of
these programs was reduced, and programs were not consistently available in a
manual format.
Currently the most robust, available, and developed adult program for social
skills in adults is the Program for the Education and Enrichment of Relationship
Skills for Young Adults (PEERS-​YA; Laugeson, 2017). This has the largest number
of studies, participants, and replications. It also has the greatest accessibility in
terms of manuals, format, training, and international availability. This program
is adapted and extended from the original UCLA PEERS Program, a 14–​16-​
week, parent-​assisted social skills group intervention for adolescents with ASD
(Laugeson & Frankel, 2010), maintaining the same format and the work method-
ology and supported by caregivers or social coaches. The program takes place over
16 weeks with simultaneous sessions of 1.5 hours, each involving a group of adults
and a group of coaches who might be parents or other caregivers with two leaders
for each group, and it is designed for individuals without intellectual disabilities.
Sessions address conversational skills, electronic communication, how to choose
friends, how to organize meetings and get-​togethers, social etiquette for romantic
dates, and conflict management among others. The teaching method comprises
didactic and structured instruction, Socratic method, role play, perspective
taking, behavioral rehearsals, modeling, assignments and reviews, and feedback
in each session for 16 weeks. Both groups have their own leader but will work
with the same objective and content. While adults receive didactic instructions
and chances to role play and rehearse, caregivers (or coaches) will learn the step-​
by-​step lesson and will gather ways of supporting the participant adult in the
homework assignments and practice during each week. In order to benefit max-
imally from the PEERS-​YA program, participants must be highly motivated to
learn the proposed content, committed to the assigned tasks, attend all meetings,
and have the support of a coach. An important novelty of this program are ses-
sions related to romantic dates, which has not previously been addressed in other
interventions and especially in group format. This is often left aside despite being
highly required by some patients. However, it is important to take into account
that clinicians will probably have to make adjustments to each country and cul-
ture regarding the romantic etiquette, since this can be a very culturally sensitive
aspect. Those adjustments would be related to the specific content of the lessons,
but not to the teaching methodology.
While the implementation of this specific program without caregivers or
coaches is discouraged, the authors acknowledge that this may be the reality for
many adults, and it can be unavoidable. In this instance, the authors recommend
giving handouts of the sessions to caregivers or coaches, even if they do not at-
tend the sessions, and involving them by giving them other additional resources
and materials, such as books, apps, or websites to learn more about the program
and how to support their adult during the training. In the case of individuals
with intellectual disabilities, the authors recommend making the program longer
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Social Skills Interventions85

and slower, simplifying lessons, and providing visual aids (Laugeson, 2017).
Additionally, in the current context of increasing internet-​based interactions and
relationships, the intervention is being piloted via telehealth.

Individual Work of Social Skills and Techniques

For those individuals who might not benefit from group interventions for dif-
ferent reasons or if groups are not available for them, an individual approach
and training is a treatment option. The initial assessment will be the same as the
one proposed in the group section. The individual approach will include didactic
instructions, role play, behavioral rehearsals, homework, practical assignments,
perspective-​taking exercises, and mixed techniques. These interventions can be
well suited to the framework of individual psychotherapy and can also be coordi-
nated in collaboration with different professionals, sometimes using manualized
interventions as curriculum and intervention guides.
In this case, the clinician will deliver a tailor-​made intervention, based on the
needs and goals of the patient and the area of performance; sometimes this can
be the work environment, social relationships, romantic relationships, or all the
areas in general. Sometimes the clinician will work on teaching specific skills
that apply to all areas, such as conversational skills, or in some other cases, spe-
cific abilities for a specific area, like handling disagreements with coworkers or
inviting someone on a date. Just as in a social skills group intervention, it can be
very useful to work with a social coach or caregiver, mentor, or friend who can
troubleshoot in ecologically valid situations and help in implement real-​world
behavioral rehearsals, monitoring and giving feedback on the interactions of the
consultant.

CASE STUDY

Sara is a 19-​year-​old woman studying design at local university with a recent diag-
nosis of ASD. She presented social struggles throughout her life and has no friends
or social groups. She finds it very difficult to participate in social situations, to in-
itiate and maintain conversations with others, and to handle disagreements and
criticism. She appears socially awkward, rude, arrogant, and insensitive to others,
which is the opposite reaction she wants to generate. Her parents reported the
same and gave examples of how she tried to get closer to peers by being too clingy
and not realizing when she was not welcome to a group or conversation.
She was motivated to learn social skills and all the lessons that were part of
the PEERS-​YA Program. She was an excellent candidate for group interven-
tion, meeting all the inclusion criteria (she had no intellectual disabilities or
comorbidities, she was socially motivated, and she could count on her mother to
provide support alongside the intervention), yet there was no group available be-
ginning any time soon for her.
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86 P sychological T herapies for A dults W ith A utism

It was decided that individual cognitive behavior therapy (CBT) and social
skills training in two separate sessions a week in an individual format would be
the best the treatment option. We followed the lessons from PEERS-​YA almost
in the same order they were presented in the manual: from conversational skills
to complex social behaviors. Also, it was agreed that her mother would help her
do her weekly assignments. The dating etiquette lessons from the PEERS-​YA
Program were omitted, as she was not interested in dating anyone romantically
and focused on the lessons that involved finding sources of friends; conversational
skills; entering, maintaining, and exiting conversations; electronic communica-
tion; appropriate use of humor; and handling rumors, gossip, and disagreements.
Strategies used in each session included didactic step-​by-​step instruction for
each lesson, perspective-​taking questions, one-​on-​one role play with her thera-
pist, role play videos, practicing the assignments with the help of her mother in
her natural settings, and reviewing the practice and feedback.
The highly structured method of each PEERS-​YA sessions allowed her to go
step by step in each behavior targeted, reviewing, practicing, and rehearsing her
interactions. This gave her more security and self-​efficacy. Previously, she would
miss the key points of a specific social aspect and behavior involved and didn’t
realize exactly what went awry. With the intervention she could identify where
she was failing and practice the step that she was missing or that was more dif-
ficult for her, noting which part of the skill needed to be corrected or improved.
The individual approach worked for her, and sometimes she would take more
than one session for each lesson if needed to ensure that the lesson was com-
pletely mastered before continuing with the following. PEERS-​YA program might
be useful also when working with an individual approach when group programs
are not available.

CASE STUDY

Connan is a 24-​year-​old male with ASD and no intellectual disability. He received

his diagnosis at the age of 5 and engaged in various treatments throughout his
life. He had a longstanding history of social and communication impairments
and lack of social motivation, and he had not been able to form significant bonds
with peers. He attended university, where he obtained a degree in literature and
education, and currently works as a teacher’s aide at a school. His tasks are mainly
helping teachers to prepare literature reading materials for adolescents in sec-
ondary school and to assist in administrative work. To perform his responsibilities,
he needs to research and select books and short stories, prepare activities for
students to solve, send them to the teachers, and work with them planning future
assignments.
Connan sought therapy due to interpersonal problems at his workplace.
During the initial assessment he reported procrastinating in his work and not
knowing how to approach his coworkers, both personally and through electronic
means. When probed by the clinician regarding his procrastination, he described
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Social Skills Interventions87

concerns about failure in social work-​related situations and worries about what
his coworkers might think of him. There was an impression of anxiety interfering
in his socialization. As he presented both social skills impairments and traits of
social anxiety it was suggested to him to undergo social skills training and CBT
for his anxiety symptoms. Connan agreed to it but explicitly informed the clini-
cian that he did not intend to work toward expanding his social network and just
wanted to “solve this issue at work.” Taking into account the patient’s goals, his
lack of social motivation, and his co-​occurring social anxiety, it was decided not
to offer group interventions but to provide a tailor-​made social skill training si-
multaneously with CBT.
The intervention was designed using didactic and structured instructions on
how to use instant messaging services and write work emails and involved mod-
eling and assisting Connan in writing, behavioral rehearsals, and role play with
the clinician prior to sending any communication. There was no need to assist
him in specific tasks such as selecting reading material or filling administrative
forms. In addition, a modified CBT anxiety protocol was initiated. Modifications
included offering more and longer sessions, fewer cognitive techniques, and more
behavioral strategies. It was particularly helpful for him to reduce avoidance to
note down what might go wrong, facing the feared situation, and fact checking if
his initial thoughts indeed occurred. He reported fewer difficulties in facing so-
cial situations despite worrying he would confront anxiety-​triggering situations.
Nevertheless, Connan did not seem motivated to establish new relationships and
was content with just being able to perform well at work.
In cases like Connan’s it is important to thoroughly identify social skills
impairments and co-​ occurring conditions such as anxiety or depression,
since most of the times, these comorbidities can account for a percentage of
the individual’s social difficulties that superficially might strike as core ASD
symptoms. Not addressing these adequately is usually associated with sub-​clinical
response to treatment and treatment dropout.

Underserved Populations

We believe that it is necessary for future lines of research and practice in social
skills to include underseen populations, such as women and those with nonbinary
gender identities and lesbian, gay, bisexual, transgender, queer and intersexed
community (LBGTQI) individuals. These groups have been underrepresented in
research and practice, and differential needs and supports in the social skills areas
might not be fully addressed. It is essential that gender identity, diversity, and
sexual orientation are respected and considered when designing practices (Hull
et al., 2020; Strang et al., 2020), including social skills interventions, since this
respect will increase engagement toward the treatment and will emotionally vali-
date the individual’s needs, rights, and goals.
It is important is to consider that women may present different social profiles
than men (Carpenter et al., 2019; Happé & Frith, 2020; Halladay et. al, 2015;
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88 P sychological T herapies for A dults W ith A utism

Mandy & Lai 2017), with greater camouflaging strategies (Hull et al., 2017, 2019;
Lai et al., 2021) and different social expectations for them across cultures. This will
have an impact on the targeted skills in a specific curriculum and the technique
selection. Also, women on the spectrum are more likely to have been exposed to
physical, sexual, and psychological abuse (Haruvi-​Lamdan et al., 2020), raising
the issue of vulnerability of people with ASD in relationships (Bargiela et al.,
2016). Preventing risks and promoting safety and healthy personal relationships
should be a part of any social skills training for any adult on the spectrum of any
biological sex and gender identity.

Future Directions

A promising area in social skills development is technology. Video modeling is

already a well-​documented evidence-​based technique for teaching skills, but in
some studies virtual reality and different apps and software for teaching social
skills are being implemented and tested. It is important to consider the possibilities
that this experimental and exploratory field can bring (Kandalaft et al., 2013). The
use of technology and virtual reality can be well suited to the cognitive style of
individuals with ASD (Parsons & Mitchell, 2002) and might be very promising
combined with video modeling. Currently we still do not know the evidence of ef-
fectiveness of these interventions, but they will definitely provide new possibilities
for accessing treatments that were not available before due to geographical dis-
tance or because of limited resources. This can be very beneficial and necessary
for many communities in the future.

CONCLUSIONS

We still have a lot to do, research, and learn in order to better support adults
with ASD generally. There is a limited, but encouraging, set of evidence-​based
programs and techniques in social skills program development whose aim will
always be to increase the quality of the relationships and the quality of life of the
patient.
When applying social skills interventions, clinicians should consider the fol-
lowing key points: performing a thorough assessment, selecting the goals and
skills, deciding the best treatment option for the individual, and choosing the
format that best suits the patient’s needs at the moment of assessment. The fol-
lowing steps would be implementing, monitoring, and assessing the intervention
and its outcomes. This process should be dynamic, since it might change over
time, and it should take into account individual and cultural variables that are
involved, keeping in mind aspects related to gender and diversity. It is impor-
tant to remember that any social skills intervention will include training people
with ASD but will also involve educating nonautistic people about ASD (Baker,
2003) and its full potential to contribute to a richer world.
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Social Skills Interventions89

When working with individuals with ASD, clinicians are usually trying to pro-
vide support to navigate successfully the world outside the spectrum. That other
world, the autistic social world and point of view, with its plots and inner logic,
is intriguing and fascinating for clinicians to explore and understand deeply its
functioning and reveal its uniqueness in every treatment, individual, and ther-
apeutic relationship. It will also be interesting to explore the communication,
coping strategies, and the resources that arise from the interaction of individuals
with ASD with each other. This knowledge could be invaluable and could be an-
other important aspect of future interventions in social skills.
Those two social processing worlds are actually one we all share in practice,
and the efforts to understand and to build bridges should be shared across re-
search and clinical practice, advocates, stakeholders, autistic communities, and
clinicians. The more bridges that are built, the more possibilities there will be for
everyone to explore the infinite potential of human relationships.

REFERENCES

Baker, J. (2003) Social skills training for children and adolescents with Asperger syndrome
and social communication problems. Autism Asperger Publishing Co.
Bargiela, S., Steward, R., & Mandy, W. (2016) The experiences of late-​diagnosed women
with autism spectrum conditions: An investigation of the female autism phenotype.
Journal of Autism Developmental Disorders, 46, 3281–​3294.
Bellini, Scott, and Jessica K. Peters. (2008) Social skills training for youth with autism spec-
trum disorders. Child and Adolescent Psychiatric Clinics of North America, 17(4), 857–​873.
Bishop-​Fitzpatrick, L., Minshew, N. J., & Eack, S. M. (2013). A systematic review of
psychosocial interventions for adults with autism spectrum disorders. Journal of
Autism and Developmental Disorders, 43(3), 687–​694.
Caballo, V. E. (2002). Manual de entrenamiento de las habilidades sociales. Siglo XXI.
Carpenter, B., Happé, F., & Egerton, J. (Eds.). (2019). Girls and autism: Educational,
family and personal perspectives. Routledge.
Frith, U., & Happé, F. (1999). Theory of mind and self‐consciousness: What is it like to
be autistic? Mind & Language, 14, 82–​89.
Gaus, V. L. (2007). Cognitive-​behavioral therapy for adult Asperger syndrome. Guilford
Press.
Gaus, V. L. (2011) Adult Asperger syndrome and the utility of cognitive-​behavioural
therapy. Journal of Contemporary Psychotherapy, 41, 47–​56.
Gray, C. (1994). Comic strip conversations: Illustrated interactions that teach conversation
skills to students with autism and related disorders. Future Horizons.
Gray, C. A., & Garand, J. D. (1993). Social stories: Improving responses of students with
autism with accurate social information. Focus on Autistic Behaviour, 8(1), 1–​10.
Gresham, F. M., Sugai, G., & Horner, R. H. (2001). Interpreting outcomes of social skills training
for students with high-​incidence disabilities. Exceptional Children, 67(3), 331–​344.
Halladay, A. K., Bishop, S., & Constantino, J. N. (2015). Sex and gender differences in
autism spectrum disorder: Summarizing evidence gaps and identifying emerging
areas of priority. Molecular Autism, 6, 36.
90

90 P sychological T herapies for A dults W ith A utism

Happé F. (2003). Theory of mind and the self. Annals of the New York Academy of
Sciences, 1001, 134–​144.
Happé, F., & Frith, U. (2020). Annual research review: Looking back to look forward—​
changes in the concept of autism and implications for future research. Journal of
Child Psychology Psychiatry, 61, 218–​232.
Haruvi-​Lamdan, N., Horesh, D., Zohar, S., Kraus, M., & Golan, O. (2020). Autism spec-
trum disorder and post-​traumatic stress disorder: An unexplored co-​occurrence
of conditions. Autism: The International Journal of Research and Practice, 24(4),
884–​898.
Howlin, P., & Moss, P. (2012). Adults with autism spectrum disorders. Canadian Journal
of psychiatry. Revue Canadienne de psychiatrie, 57(5), 275–​283.
Hull, L., Lai, M. C., Baron-​Cohen, S., Allison, C., Smith, P., Petrides, K. V., & Mandy, W.
(2019). Gender differences in self-​reported camouflaging in autistic and non-​au-
tistic adults. Autism, 24(2), 352–​363.
Hull, L., Mandy, W., & Petrides, K. V. (2017). Behavioural and cognitive sex/​gender
differences in autism spectrum condition and typically developing males and
females. Autism, 21(6), 706–​727.
Hull, L., Petrides, K. V., Allison, C., Smith, P., Baron-​Cohen, S., Lai, M. C., & Mandy,
W. (2017). “Putting on my best normal”: Social camouflaging in adults with au-
tism spectrum conditions. Journal of Autism and Developmental Disorders, 47(8),
2519–​2534.
Kandalaft, M. R., Didehbani, N., Krawczyk, D. C. (2013). Virtual reality social cog-
nition training for young adults with high-​functioning autism. Journal Autism
Developmental Disorders, 43, 34–​44.
Kelly, R. A. (2010). Entrenamiento de las habilidades sociales: Guía práctica para intervenciones/​
Jeffrey A. Kelly;[versión española Susana del Viso]. Desclée de Brouwer, 1992.
Lai, M. C., Hull, L., Mandy, W., Chakrabarti, B., Nordahl, C. W., Lombardo,
M. V., . . . Livingston, L. A. (2021). Commentary: ‘Camouflaging’ in autistic people–​
reflection on Fombonne (2020). Journal of Child Psychology and Psychiatry, 62(8).
Lai, M. C., Lombardo, M. V., Auyeung, B., Chakrabarti, B., & Baron-​Cohen, S. (2015).
Sex/​gender differences and autism: Setting the scene for future research. Journal of
the American Academy of Child & Adolescent Psychiatry, 54(1), 11–​24.
Laugeson, E. A. (2017). PEERS® for young adults: Social skills training for adults with au-
tism spectrum disorder and other social challenges. Taylor & Francis.
Laugeson, E. A., & Frankel, F. (2010). Social skills for teenagers with developmental and
autism spectrum disorders: The PEERS Treatment Manual. Routledge.
Laugeson, E. A., Frankel, F., Gantman, A., Dillon, A. R., & Mogil, C. (2012). Evidence-​
based social skills training for adolescents with autism spectrum disorders: The UCLA
PEERS program. Journal of Autism and Developmental Disorders, 42(6), 1025–​1036.
Laugeson, E. A., Gantman, A., Kapp, S. K., Orenski, K., & Ellingsen, R. (2015). A
randomized controlled trial to improve social skills in young adults with autism spec-
trum disorder: The UCLA PEERS® program. Journal of Autism and Developmental
Disorders, 45(12), 3978–​3989.
Lord, C., McCauley, J. B., Pepa, L. A., Huerta, M., & Pickles, A. (2020). Work, living, and
the pursuit of happiness: Vocational and psychosocial outcomes for young adults
with autism. Autism, 24(7), 1691–​1703.
91

Social Skills Interventions91

Maddox, B. B., White, S. W. (2015) Comorbid social anxiety disorder in adults with au-
tism spectrum disorder. Journal of Autism Developmental Disorders, a45, 3949–​3960.
Mandy, W., & Lai, M.-​C. (2017). Towards sex-​and gender-​informed autism research.
Autism, 21(6), 643–​645.
Myles, B. S., & Simpson, R. L. (2001). Understanding the hidden curriculum: An es-
sential social skill for children and youth with Asperger syndrome. Intervention in
School and Clinic, 36(5), 279–​286.
Parsons, S., & Mitchell, P. (2002). The potential of virtual reality in social skills training
for people with autistic spectrum disorders. Journal of Intellectual Disability
Research, 46(5), 430–​443.
Reichow, B., Steiner, A. M., & Volkmar, F. (2013). Cochrane review: Social skills groups
for people aged 6 to 21 with autism spectrum disorders (ASD). Evidence-​Based
Child Health, 8(2), 266–​315.
Rumball, F., Happé, F., & Grey, N. (2020). Experience of trauma and PTSD symptoms
in autistic adults: Risk of PTSD development following DSM‐5 and non‐DSM‐5
traumatic life events. Autism Research, 13(12), 2122–​2132.Spain, D., & Blainey, S.
H. (2015). Group social skills interventions for adults with high-​functioning au-
tism spectrum disorders: A systematic review. Autism: The International Journal of
Research and Practice, 19(7), 874–​886.
Spain, D., & Blainey, S. H. (2015). Group social skills interventions for adults with
high-functioning autism spectrum disorders: A systematic review. Autism, 19(7),
874–886.
Strang, J. F., van der Miesen, A. I., Caplan, R., Hughes, C., daVanport, S., & Lai, M.-​C.
(2020). Both sex-​and gender-​related factors should be considered in autism re-
search and clinical practice. Autism, 24(3), 539–​543.
Tincani, M., & Bondy, A. (Eds.). (2015). Autism spectrum disorders in adolescents and
adults: Evidence-​based and promising interventions. Guilford Publications.
Walsh, E., Holloway, J., & Lydon, H. (2018) An evaluation of a social skills interven-
tion for adults with autism spectrum disorder and intellectual disabilities preparing
for employment in Ireland: A pilot study. Journal of Autism and Developmental
Disorders, 48, 1727–​1741.
Williams, D. (2010). Theory of own mind in autism: Evidence of a specific deficit in self-​
awareness? Autism, 14(5), 474–​494.
Williams, D. M., Happé, F. (2009). What did I say? Versus what did I think? Attributing
false beliefs to self amongst children with and without autism. Journal of Autism
Developmental Disorders, 39, 865–​873.
White, S. W., Keonig, K., & Scahill, L. (2006). Social skills development in children with
autism spectrum disorders: A review of the intervention research. Journal of Autism
and Developmental Disorders, 37(10), 1858–​1868.
White, S. W., Koenig, K., & Scahill, L. (2010). Group social skills instruction for
adolescents with high-​functioning autism spectrum disorders. Focus on Autism and
Other Developmental Disabilities, 25(4), 209–​219.
White, S. W., Ollendick, T., Albano, A. M., Oswald, D., Johnson, C., Southam-​Gerow, M.
A., Kim, I., & Scahill, L. (2013). Randomized controlled trial: Multimodal anxiety
and social skill intervention for adolescents with autism spectrum disorder. Journal
of Autism and Developmental Disorders, 43(2), 382–​394.
92

92 P sychological T herapies for A dults W ith A utism

White, S. W., Kreiser, N. L., Pugliese, C., & Scarpa, A. (2012). Social anxiety mediates
the effect of autism spectrum disorder characteristics on hostility in young adults.
Autism, 16(5), 453–​464.
White, S. W., Scarpa, A., Conner, C. M., Maddox, B. B., & Bonete, S. (2014). Evaluating
change in social skills in high-​functioning adults with autism spectrum disorder
using a laboratory-​ based observational measure. Focus on Autism and Other
Developmental Disabilities, 30(1), 3–​12.
Wilkins, J., & Matson, J. L. (2009). A comparison of social skills profiles in intellectually
disabled adults with and without ASD. Behavior Modification, 33(2), 143–155.
Winner, M. G., & Crooke, P. J. (2009). Social thinking: A training paradigm for
professionals and treatment approach for individuals with social learning/​ so-
cial pragmatic challenges. Perspectives on Language Learning and Education,
16(2), 62–​69.
Winner, M. G., & Crooke, P. J. (2011). Social communication strategies for adolescents
with autism. The ASHA Leader, 16(1), 8–​11.
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Positive Behavioral Support

DARREN BOWRING AND SANDY TOOGOOD ■

KEY CONSIDERATIONS

• PBS is a framework model for designing person-​centered,

multicomponent interventions, based on a prior functional assessment.
• Functional assessment identifies motivative contexts and maintaining
variables that account for the occurrence of challenging behavior (CB).
• PBS features data-​informed decision making at assessment, intervention,
and monitoring phases.
• PBS plans are a package of interventions that are constructional,
nonaversive, effective, and least-​restrictive and which involve
stakeholder participation.
• The primary aim of PBS is to improve quality of life. Quality of life is
both an intervention and outcome goal.
• Preliminary research indicates PBS is effective at reducing CB in
individuals with ASD, but more robust research in larger samples is
required to inform applied service development.

INTRODUCTION: CHALLENGING BEHAVIOR AND ASD

Challenging behavior (CB) is defined as

Culturally abnormal behavior(s) of such an intensity, frequency or duration

that the physical safety of the person or others is likely to be placed in serious
jeopardy, or behavior which is likely to seriously limit use of, or result in the
person being denied access to, ordinary community facilities (Emerson &
Einfeld, 2011, p. 4).
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94 P sychological T herapies for A dults W ith A utism

CB includes, but is not restricted to, aggression, self-​injury, property damage, and
negative vocalizations. The term was adopted in the 1980s to focus attention on
the challenges service providers faced in meeting people’s support needs in the
community rather than in institutional services, and to seek causal explanations
within the social environment rather than the individual. The application of PBS
to date has focused on populations with developmental disabilities, with research
largely on intellectual disability populations, some of which include persons with
an additional ASD diagnosis.
People with intellectual disabilities account for 1%–​2% of the general popu-
lation (British Psychological Society, 2011). Estimates vary, but it is thought
that around 10% of people with intellectual disabilities will have an additional
ASD diagnosis, rising to 50%–​60% of people with severe or profound intellec-
tual disabilities (Emerson & Baines, 2010). Approximately one third of people
with an ASD diagnosis will also have intellectual disabilities (Emerson & Baines,
2010). ASD and ID are risk factors for CB that increase with severity of disability
and presence of additional physical, sensory, or communication impairments
(Bowring et al., 2017; Holden & Gitlesen, 2006; Jones et al., 2008; Lundqvist,
2013). Research in population samples suggests that approximately one in every
five or six individuals with intellectual disabilities that are known to services will
present with CB (Bowring et al., 2017; Jones et al. 2008; Lundqvist, 2013). A study
by Hutchins and Prelock (2014) found the prevalence of CB in adults with both an
intellectual disability and ASD diagnosis ranged from 35.8% to 63.4% with most
studies finding that more than half of these individuals engaged in more than
one CB. Studies in individuals with an ASD only diagnosis suggest 13%–​30% of
children engage in severe CB (Matson et al., 2008), with one in four presenting
clinically challenging aggressive behavior (Hill et al., 2014).

AN OVER VIEW OF THE PBS APPROACH

Positive behavioral support (PBS) is a multicomponent framework for organizing,

delivering, and evaluating the impact of interventions selected for an individual
with developmental disorders whose behavior is complex and challenging (Carr
et al., 1999; Horner, 2000; Kincaid et al., 2016; LaVigna & Willis, 2012). The prin-
cipal aim in PBS is to enhance stakeholder quality of life (QoL). Stakeholders are
persons whose behavior is challenging and those affected by the behavior such
as parents, siblings, teachers, and care workers. Reducing CB represents one im-
portant way of enhancing stakeholder QoL, and enhancing QoL provides several
important ways of reducing CB. Thus, QoL is both an intervention and an out-
come. PBS is a person-​centered approach in which behavior change procedures
are determined on an individual basis following a period of functional and con-
textual assessment. Functional assessment identifies motivative contexts and
maintaining variables that account for the occurrence of CB. Interventions are
multicomponent modifications of behavior-​environment interactions, indicated
by assessment, such as environmental enrichment and supporting alternatives
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Positive Behavioral Support95

to CB. Intervention effects are carefully monitored and systematically evaluated

using data.

ORIGINS OF PBS

PBS evolved in the 1980s from applied behavior analysis (ABA; Baer et al.,
1968) amid concerns about nonfunctional analytic approaches involving the use
of aversive stimuli such as aromatic ammonia (Tanner & Zeiler, 1975) and elec-
tric shock (Carr & Lovaas, 1983) to suppress severe problem behavior. ABA had
developed as a field at a time of increasing public interest in civil rights and social
justice. At the same time, work had begun in Scandinavia, leading eventually to
the elaboration of the principles of normalization (Wolfensberger et al., 1972),
which aimed to value people at risk of being devalued. Opinion divided sharply
between empiricists and theorists. Pioneers of nonaversive approaches included
Meyer and Evans (1989) and LaVigna and Donnellan (1986). Carr et al. (2002)
described PBS as a synthesis of procedures from ABA, normalization theory,
and the inclusive movement. Kincaid et al. (2016) present PBS as a dynamic
and continually involving system that will come to include components as yet
undiscovered.

The PBS Framework Approach

PBS is a framework for designing person-​centered multicomponent interventions

based on a prior functional assessment (Iwata et al., 1982; O’Neill et al., 2014).
Intervention plans typically include a selection of social, behavioral, and educa-
tional procedures from ABA (Cooper et al., 2020) and evidence-​based approaches
from other related disciplines (such as occupational therapy, speech and language
therapy, and clinical psychology) in ways that are internally coherent, consistent
with assessment, and compatible with PBS core values. Intervention components
are constructional (Goldiamond, 1974), nonaversive, effective, and the least re-
strictive available, with stakeholder participation a key component (Carr et al.,
2002; Gore et al., 2013). PBS interventions pursue improvement at the individual,
group, and systems levels, addressing, for example, issues such as service staff sup-
port, physical and mental health, and organizational structures.

PBS as a “Package” of Interventions

Addressing behavior change in natural settings requires multiple intervention

procedures, and the combination of these into a “package” is what defines PBS
(Smith, 2013).
The causal model of Hastings et al. (2013) suggests CB is maintained by biolog-
ical and/​or social consequences that includes the behavior of others. Maintaining
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96 P sychological T herapies for A dults W ith A utism

processes can include stimulation, attention, tangible, and escape from demands
(Carr, 1977). Pain reduction has recently been added to this list (Hastings et al.,
2013). To understand CB, it is necessary to understand the circumstances that
occur before and what happens after the behavior (Gore et al., 2013). People with
developmental disorders have historically experienced impoverished social con-
tact, low levels of engagement, and aversive interactions (Hastings et al., 2013).
CB is often the most effective means of addressing these issues. In order to un-
derstand the maintaining processes, a functional behavioral assessment of the
social and physical environment and context in which the CB occurs is needed
(Miltenberger et al., 2019). This explains how the existing behavior helps the in-
dividual to manage or exert control over their environment, which informs the
development of a more effective and person-​centered intervention plan (Didden
et al., 1997; Iwata et al., 1982; Miltenberger et al., 2019; O’Neill et al., 2014;
Sprague & Horner, 1995). Research indicates that PBS interventions for CB have
a greater chance of success if based on prior functional assessment (Carr et al.,
1999; Hanley et al., 2003; Scott & Cooper, 2017).
Development of intervention plans in the PBS model is a collaborative en-
deavor with stakeholders to ensure good contextual fit (Albin et al., 1999;
Monzale & Horner, 2020). While there is no set framework for the design of plans,
they should be multielement and comprise some key components (LaVigna &
Donnellan, 1986; McClean & Grey, 2012; Webber et al., 2011) including:

• Proactive strategies that are preventative, such as proactive management

of physical and mental health; augmentative communication; strategies
that modify the establishing operations that evoke CB (Michael,
1993); ABA-​evidenced behavioral technology such as differential
reinforcement of other behaviors (Vollmer & Iwata, 1992); strategies that
promote person-​centered QoL and give the individual choice, control,
engagement; strategies that promote relationships; and community
participation.
• Proactive strategies that are developmental, such as teaching new
behaviors, promoting skills, teaching functionally equivalent behaviors,
and teaching coping and tolerance skills.
• Secondary strategies, such as approaches to support the individual at
early signs of distress, stimulus change, diversion to preferred activities,
active listening, and a change of interactor or interactional style.
• Reactive strategies to reduce immediate risks and promote safety
(LaVigna & Willis, 2012).
• Wider system approaches, such as staff/​carer training and support for
carers.

An emerging trend in PBS practice is an adaptation from the delivery of school-​

wide positive behavioral interventions and supports (PBIS) in the USA (Sugai &
Horner, 2020), which describes a tiered level of support intensity. These are:
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Positive Behavioral Support97

1. Universal support (preventative for everyone) which includes QoL

interventions, clear procedures and routines, teaching prosocial
behavior, promoting relationships, and reinforcing positive behavior.
2. Targeted support (additional, for those needing extra help in order to
succeed), which includes targeted group interventions, social skills
groups, brief functional assessments, and bespoke group support
arrangements.
3. Intensive support (intervention for a few when behavior change is
weak or not apparent), which would be based on a detailed functional
assessment with individualized intervention plans.

A SUMMARY OF THE EMPIRICAL EVIDENCE FOR PBS

PBS has been used as a framework for intervention in services across the UK
and in other countries (McClean & Grey, 2012). There is an emerging evidence
base from meta-​analytic reviews (Carr et al., 1999; LaVigna & Willis, 2012), and
recent research studies with individuals with intellectual disabilities, including
those with ASD (Allen et al., 2011; Hassiotis et al., 2009; McClean et al., 2007;
McKenzie & Patterson, 2010), that PBS is effective at reducing levels of CB in-
cluding aggression and self-​ injurious behavior. While initial results are en-
couraging, early research has been limited by methodological weaknesses (e.g.,
variations in definitions of CB, small sample sizes, lack of a control group, and
assessment tools that have not been psychometrically evaluated or assessed for
use in individuals with ASD; see McClintock et al., 2003) and a consistent failure
to assess change in QoL and to explore the social validity impact of interventions
(Carr et al., 2002; Kincaid et al., 2002; McClean et al., 2005). A meta-​analysis of
small randomized and quasi-​randomized controlled trials (RCTs) concluded that
behavioral interventions could be effective in helping people with ASD (Heyvaert
et al., 2014), but that research designs with greater robustness in community
settings were required.
In a study of four adults with ASD, McClean and Grey (2012) discovered sub-
stantial reductions in CBs following PBS intervention, along with improvement in
mental health and QoL. Boettcher et al. (2003) used PBS to decrease CB in a child
with ASD and her siblings, and the family experienced additional positive effects
from this proactive intervention. A study by Lucyshyn et al. (2007) demonstrated
that PBS led to a 75% reduction in CB for a child with ASD, and that the effects
were maintained across a 7-​year follow-​up period. Associated outcomes included
improved community engagement and social validity outcomes for parents.
Bowring et al. (2017) considered individuals referred to a community-​based PBS
team, 53% of whom had ASD; they reported significant reductions in CB meas-
ured with the Behavior Problems Inventory—​Short Form (BPI-​S; Rojahn et al.,
2012) with scores reducing from a mean of 37.74 (SD 30.54) at referral, to 12.12 (SD
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98 P sychological T herapies for A dults W ith A utism

12.24) at follow up, with a large effect size (d =​0.84). There was also significant im-
provement in QoL, health-​related QoL and social validity impact such as reduced
stress levels, greater knowledge on causes of CB, fewer injuries and damage to
properties, improved relationships and greater access to joint community activities.
Despite these encouraging results, research into PBS as a framework model re-
mains at the preliminary stage, and further studies have been advocated to inform
theoretical understanding and applied service development (McClean et al., 2007;
McKenzie, 2011). There is a need for further PBS studies, with larger samples, par-
ticularly in adult ASD populations, with more robust research designs, and with
data examining QoL and social validity outcomes as well as CB. There has been a
lack of robust RCT designs in ASD research (McGrew et al., 2016). One additional
challenge for researchers is that PBS, as used in community service providers, is
not a single treatment protocol, but a “package” of interventions (Stahmer et al.,
2005). It is thus important that researchers have an agreement on the definition
of PBS and evaluate the outcomes of PBS as a “package” in group studies (Smith,
2013), with ASD-​specific samples.

CASE STUDY

Background

Michael was 19 years old and had a diagnosis of ASD and moderate intellectual
disability. He had recently left school and transferred to an adult day service and
respite provider. The local PBS practitioner received a referral due to Michael self-​
injuring in the form of punches to the right side of his face, occurring several times
each day in all environments, resulting in an open wound just under his right eye.
The PBS practitioner met Michael and his parents at home. Parents reported a
difficult transition for Michael from children to adult services with him struggling
to adjust to the day service and different respite provider. They reported some self-​
injury during childhood in the form of wrist biting and head hitting, but nothing
of the recent intensity. The PBS practitioner completed a BPI-​S (Rojahn et al.,
2012) and a QoL measure (based on Kincaid et al., 2002). The QoL scale assessed
five domains: interpersonal relationships, self-​determination, social inclusion, per-
sonal development, and emotional well-​being. There has been a lack of measure-
ment of QoL impact in PBS Studies (cf. LaVigna & Willis, 2012). Some studies, such
as Hassiotis et al. (2011) and Allen et al. (2011) have focused on one QoL domain
such as social inclusion, using the Guernsey Community Participation and Leisure
Activities scale (Baker, 2000). Other small studies, such as McClean et al. (2007),
have used tools such as Quality of Life Questionnaire (QoL-​Q; Schalock et al., 1989).
The BPI-​S identified the specific behaviors to target, alongside estimates of
current frequency and severity. The QoL measure identified the lack of com-
munity presence and peer contact Michael had, as parents and services had
reduced demands on him in recent months given the behavioral challenges. At
the outset the PBS practitioner ensured there were data records in place to record
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Positive Behavioral Support99

instances of Michael hitting his face. Additionally, the PBS practitioner arranged
investigations to rule out medical, dental, and psychiatric issues.

Functional Assessment

The PBS practitioner completed a detailed functional assessment in all the

environments Michael accessed. The CB being assessed had been defined using
BPI-​S assessment. This involved:

• A review of previous professional reports such as Michael’s ASD

assessment, an educational psychology report; and recommendations
from a speech and language therapy (SALT) assessment.
• Completion of motivational assessment “rating” scales (Durand &
Crimmins, 1992) in all environments with key informants.
• Completion of a functional assessment interview (O’Neill et al.,
2014) with key informants.
• Analysis of indirect antecedent behavior consequence (ABC) sheets with
episodic severity data.
• Direct observations in all environments, particularly at times when CB
had been more common, such as transitions.
• A visit to meet Michael’s previous school and respite provider to collate
information about previous supports and how the environments were set
up to meet Michael’s needs.
• A mediator analysis of staff support’s understanding of Michael’s
preferred support arrangements and identification of training deficits.

The assessment concluded that Michael’s underlying anxiety levels were higher
due to the disruptive transition to adult services. The occupational therapist (OT)
had completed a sensory profile assessment and identified that high levels of noise
or visual stimulation (crowds) could serve as a setting event making a particular
task (such as arriving at day services or playing bowling) more aversive. Results
of the functional assessment concurred with this and concluded that the beha-
vior of head hitting was maintained by negative reinforcement, as it led to im-
mediate escape from aversive situations or termination of an aversive task (e.g.,
the bowling alley was very busy with a children’s party, then Michael began head
hitting, then he was taken home; arrived at day service and another service user
was screaming, then Michael began head hitting, then Mum put him back in the
car and drove around for a while until the situation had resolved).

PBS Plan and MDT Support

The PBS practitioner produced a short data-​informed presentation on the above

conclusions and presented this to Michael’s multidisciplinary team (MDT).
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100 P sychological T herapies for A dults W ith A utism

The team involved the PBS practitioner, Michael’s mother, his keyworker at day
service, key worker at respite, SALT, OT and community nurse. The MDT all
contributed to developing a multielement PBS plan based on this data. Everything
included in the plan had good contextual fit: it could be delivered by the team in
the environments where they supported Michael. The SALT worked with Michael
to contribute to the plan. The SALT used pictorial and photo aids to support
Michael to choose aspects of the plan, including activities to engage in, staff to
support, and decoration for his day service room, such as the color of paint used
on the walls. The SALT developed social stories to explain planning meetings and
developed an easy-​read version of the PBS plan that Michael could access. In this
plan it listed:

Proactive Strategies
• The prime aim of the plan was to improve QoL. The plan listed
approaches, people, and activities that were important to Michael and
essential to promote his well-​being who needed to be a regular part of
his week. The plan prioritized giving Michael choice and control over his
support arrangements and daytime program.
• The plan detailed communication strategies. The SALT supported
Michael to choose his staff and activities in both environments. Visual
planners (listing staff and activities) were made and placed at home and
day service, with portable ones for everyone supporting Michael. SALT
taught staff Makaton signs Michael used. Social stories were developed
to support new initiatives and activities.
• The psychiatrist suggested low-​arousal interventions to reduce stress
around noise, complex language, crowds, proximity of others, changes to
routines, and unfamiliar staff and transitions.
• A key aspect was predictable routines, sequences, and people. All
providers began to collect Michael from home with a clear collection/​
transition plan.
• Timings for day service were changed for consistency to 11am–​4pm;
respite hours were changed to match this on weekends, to ensure
predictable daily routines.
• A room at the day service was identified for Michael to begin and end
his day, with lots of activities he enjoyed and visual aids present to
communicate the structure and routine of the day. This replaced Michael
arriving into the busy communal “day room” without a clear plan of
his day.
• Michael’s staff had photos taken and added to his visuals planner so he
knew who would be supporting him each day.
• Staff who supported Michael were trained in ASD and low-​arousal
approaches by the local ASD Team.
• School staff delivered an additional training session (supported by
parents) for day service and respite staff, sharing advice on Michael’s
likes and dislikes and support tips. Some school staff volunteered
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Positive Behavioral Support101

to undertake shifts at day service and respite to coach and model

approaches to staff.
• Skill teaching: day services introduced some educational approaches the
school had suggested around ways Michael could communicate distress
through signing.
• Differential reinforcement of alternative (DRA) behavior was
introduced. This procedure involved reinforcing a behavior that served
as a viable alternative for the problem behavior (Vollmer & Iwata,
1992). In this case Michael was taught the Makaton sign “worried” as an
alternative to hitting his head. With each sign used, staff praised Michael
and immediately communicated and fixed the issue. Once Michael had
signed “happy,” the activity continued and Michael was given a reinforcer
in the form of a piece of candy. If Michael hit his head he was not praised
or reinforced with candy.
• The sensory profile assessment led to Michael’s day service room being
adapted with blinds, new lights, less clutter, and clear walls, apart from visual
planners. Regular sensory activities were introduced that Michael enjoyed.
• Michael would start and end the day in his room and access it at other
times if finding some days difficult. Michael increasingly attended group
activities from this safe space.
• As CB reduced, services began to reintroduce activities to key preferred
places (bowling alley, activity park, and fishing) and to meet Michael’s
friends from school for joint activities.

Secondary Strategies
• Staff began to report knowing when Michael was becoming distressed
as they became experienced in supporting him. They reported signs
such as repeating key phrases, clearing his throat, and coughing as early
indicators of distress.
• Staff were able to prompt Michael to sign what was wrong earlier (as he
had been taught) and responded to these requests promptly, reinforcing
these prosocial communication approaches.
• Michael’s sister had produced some distraction activities, including
Disney songs the staff were taught, which Michael enjoyed joining.
• The OT worked with Michael to develop coping skills. A range
of replacement techniques were explored, not always successfully
employed, but work continued on these.
• Support staff became skilled at working with Michael to change plans
when he indicated, on some days, that he did not want to engage with
certain activities.

Reactive Strategies
• If Michael started head hitting, staff and parents had agreed on low-​
arousal response strategies and would adapt activities to resolve the issue
causing distress.
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102 P sychological T herapies for A dults W ith A utism

• Staff knew Makaton signs, which helped communicate with Michael and
reassure him at these times.

Monitoring Phase

The PBS practitioner produced a clear graph detailing the frequency and severity
of head hitting behavior. To the delight of Michael’s MDT, this detailed a very
quick downward reduction in severity, and after 8 weeks of PBS input Michael’s
wound had healed over. The MDT team continued to meet weekly to review prog-
ress, consider the data, review any incidents, and continue to develop the PBS
plan collaboratively as a working document. These meetings, and the graphed
data, were helpful to parents and staff, as they could see progress being made and
they had support to review the times when things had not gone well. The PBS
practitioner continued to complete direct observations to ensure implementation
of the plan and support coaching and feedback to the team.

Outcomes

As things continued to improve the MDT meetings were extended to monthly.

The team additionally focused on improvements in terms of QoL indicators given
the behavioral improvements: Michael was meeting friends from school for activ-
ities, using the bus with support, visiting the cinema and going out for meals, in-
creasingly joining in group activities at day services, and communicating verbally
more. New targets and skills were discussed at MDT meetings to work on, based
on work that SALT continued to do with Michael. Plans were made for Michael
to begin vocational training.
After 12 months, the frequency of head hitting was such that the PBS prac-
titioner was able to withdraw from the MDT, which continued with Michael’s
mother and keyworkers from respite and day services. The PBS practitioner could
still attend by invitation if the team considered it helpful to discuss any issue.

CONCLUSIONS

ASD is a risk factor for CB that increases with the presence of additional cogni-
tive, physical, sensory and communication impairments. PBS is a person-​centered
framework that targets improvement in stakeholder quality of life and the negative
impacts of CB. In this chapter, we described PBS as a multicomponent “package”
of interventions that are person centered, function based, evidence informed,
and consistent with a set of values that emphasize empowerment and inclusion.
Functional behavioral assessment is a crucial component of a PBS framework.
PBS interventions typically enrich environments and help individuals to develop
alternatives to CB. Our case study illustrated how, using a PBS approach, a small
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Positive Behavioral Support103

team was able to enhance the quality of a person’s day-​to-​day life and reduce levels
of self-​injurious behavior. The PBS team was comprised of relevant stakeholders
and the changes they made were both evidence based and evidence informed
(i.e., data-​based decision making). The evidence base for PBS is increasing. More
studies are needed, however, with larger ASD populations and robust designs,
including utilizing psychometrically evaluated tools for ASD populations, with
measurement of QoL and social validity outcomes included. In the meantime,
PBS offers an effective and ethically sound framework for addressing behavior
and contexts that are complex and challenging.

REFERENCES

Albin, R. W., Lucyshyn J. M., Horner R. H., & Flannery K. B. (1999). Contextual fit
for behavioural support plans: A model for “goodness of fit.” In L. K. Koegel, R.
L. Koegel, & G. Dunlap (Eds.), Positive behavioural support: Including people with
difficult behaviour in the community (pp. 81–​98). Paul Brookes Publishing.
Allen, D., Lowe, K., Baker, P., Dench, C., Hawkins, S., Jones, E., & James, W. (2011).
Assessing the effectiveness of positive behavioural support: The P-​CPO project.
International Journal of Positive Behavioural Support, 1, 14–​23.
Baer, D. M., Wolf, M. M., & Risley, T. R. (1968). Some current dimensions of applied
behavior analysis. Journal of Applied Behavior Analysis, 1, 91–​97.
Baker, P. A. (2000). Measurement of community participation and use of leisure by
service users with intellectual disability: The Guernsey community participation
and leisure assessment. Journal of Applied Research in Intellectual Disabilities, 13,
169–​185.
Boettcher, M., Koegel, R. L., McNerney, E. K., & Kern Koegel, L. (2003). A family-​cen-
tered prevention approach to PBS in a time of crisis. Journal of Positive Behavior
Interventions, 5(1), 55–​59.
Bowring, D. L., Totsika, V., Hastings, R. P., Toogood, S., & Griffiths, G. M. (2017).
Challenging behaviours in adults with an intellectual disability: A total popula-
tion study and exploration of risk indices. British Journal of Clinical Psychology,
56, 16–​32.
British Psychological Society. (2011). Commissioning clinical psychology services for
adults with learning disabilities. BPS.
Carr, E. G. (1977) The motivation of self-​ injurious behaviour: a review of some
hypotheses. Psychological Bulletin, 84(4), 800-​816.
Carr, E. G., Dunlap, G., Horner, R. H., Koegel, R. L., Turnbull, A. P., Sailor, W., Anderson,
J. L., Albin, R. W., Koegel, L. K., & Fox, L., (2002). Positive behavior support: Evolution
of an applied science. Journal of Positive Behavior Interventions, 4, 4–​16.
Carr, E., Horner, R., Turnbull, A., Marquis, J., Magito-​McLaughlin, D., McAtee, M.,
Smith, C., Anderson-​Ryan, K., Ruef, M., & Doolabh, A. (1999). Positive behavior
support for people with developmental disabilities: A research synthesis. American
Association on Mental Retardation.
Carr, E. G., & Lovaas, O. I. (1983). Contingent electric shock as a treatment for severe
behavior problems. In S. Axelrod & J. Apsche (Eds.), The Effects of Punishment on
Human Behavior (pp. 221–​245). New York, Academic Press.
104

104 P sychological T herapies for A dults W ith A utism

Cooper, J. O., Heron, T. E., & Heward, W. L. (2020). Applied behavior analysis (3rd ed.).
Pearson
Didden, R., Duker, P. C., & Korzilius, H. (1997). Meta-​analytic study of treatment ef-
fectiveness for problem behaviours with individuals who have mental retardation.
American Journal on Mental Retardation, 101(4), 387–​399.
Durand, V. M., & Crimmins, D. B. (1992). The Motivation Assessment scale (MAS) ad-
ministration guide. Monaco & Associates.
Emerson, E., & Baines, S. (2010). The estimated prevalence of autism among adults with
learning disabilities in England. Improving Health and Lives: Learning Disabilities
Observatory.
Emerson, E., & Einfeld, S. L. (2011). Challenging behaviour (3rd ed.). Cambridge
University Press.
Goldiamond, I. (1974). Toward a constructional approach to social problems: Ethical
and constitutional issues raised by applied behavior analysis. Behaviorism,
2(1),1–​84.
Gore, N. J., McGill, P., Toogood, S., Allen, D., Hughes, J. C., & Baker, P. (2013). Definition
and scope for positive behavioural support. International Journal of Positive
Behavioural Support, 3(2), 4–​23.
Hanley, G. P., Iwata, B. A., & McCord, B. E. (2003). Functional analysis of problem beha-
vior: A review. Journal of Applied Behavior Analysis, 36, 147–​185.
Hassiotis, A., Canagasabey, A., Robotham, D., Marston, L., Romeo, R., & King, M.
(2011). Applied behaviour analysis and standard treatment in intellectual disa-
bility: 2‐year outcomes. British Journal of Psychiatry, 198(6), 490–​491.
Hassiotis, A., Robotham, D., Canagasabey, A., Romeo, R., Langridge, D., Blizard, R.,
Murad, S., & King, M. (2009). Randomized, single-​blind, controlled trial of a spe-
cialist behavior therapy team for challenging behavior in adults with intellectual
disabilities. American Journal of Psychiatry, 166, 1278–​1285.
Hastings R. P., Allen D., Baker P., Gore N. J., Hughes J. C., McGill P., Noone, S. J., &
Toogood, S. (2013). A conceptual framework for understanding why challenging
behaviours occur in people with developmental disabilities. International Journal of
Positive Behavioural Support, 3, 5–​13.
Heyvaert, M., Saenen, L., Campbell, J. M., Maes, B., & Onghena, P. (2014). Efficacy of
behavioral interventions for reducing problem behavior in persons with autism: An
updated quantitative synthesis of single-​subject research. Research in Developmental
Disabilities, 35(10), 2463–​2476.
Hill, A. P., Zuckerman, K. E., Hagen, A. D., Kriz, D. J., Duvall, S. W., Van Santen, J.,
Nigg, J., Fair, D., &Fombonne, E. (2014). Aggressive behavior problems in children
with autism spectrum disorders: Prevalence and correlates in a large clinical sample.
Research in Autism Spectrum Disorders, 8(9), 1121–​1133.
Holden, B., & Gitlesen, J. P. (2006). A total population study of challenging behaviour
in the county of Hedmark, Norway: Prevalence and risk markers. Research in
Developmental Disabilities, 27, 456–​465.
Horner, R. H. (2000). Positive behavior supports. Focus on Autism and Other
Developmental Disabilities, 15, 97–​105.
Hutchins, T. L., & Prelock, P. A. (2014). Using communication to reduce challenging
behaviors in individuals with autism spectrum disorders and intellectual disability.
Child and Adolescent Psychiatric Clinics of North America, 23(1), 41–​55.
105

Positive Behavioral Support105

Iwata, B. A., Dorsey, M. F., Slifer, K. J., Bauman, K. E., & Richman, G. S. (1982). Toward
a functional analysis of self-​injury. Analysis and Intervention in Developmental
Disabilities, 2, 3–​20.
Jones S., Cooper S.-​A., Smiley E., Allen L., Williamson A., & Morrison J. (2008).
Prevalence of, and factors associated with, problem behaviors in adults with intel-
lectual disabilities. The Journal of Nervous and Mental Disease, 196, 678–​686.
Kincaid, D., Dunlap, G., Kern, L., Lane, K. L., Bambara, L. M., Brown, F., Fox, L., Knoster,
T. P. (2016). Positive behavior support: A proposal for updating and refining the def-
inition. Journal of Positive Behavior Interventions, 18(2), 69–​73.
Kincaid, D., Knoster, T., Harrower, J. K., Shannon, P., & Bustamante, S. (2002). Measuring
the impact of positive behaviour support. Journal of Positive Behavior Interventions,
4(2), 109–​117.LaVigna, G. W., & Donnellan, A. M. (1986). Alternatives to punish-
ment: Solving behavior problems with non-​aversive strategies. Ardent Media.
LaVigna, G. W., & Willis, T. J. (2012). The efficacy of positive behavioural support
with the most challenging behavior: The evidence and its implications, Journal of
Intellectual and Developmental Disability, 37, 185–​195.
Lucyshyn, J. M., Albin, R. W., Horner, R. H., Mann, J. C., Mann, J. A., & Wadsworth,
G. (2007). Family implementation of positive behavior support for a child with au-
tism: Longitudinal, single-​case, experimental, and descriptive replication and ex-
tension. Journal of Positive Behavior Interventions, 9(3), 131–​150.
Lundqvist, L. (2013). Prevalence and risk markers of behaviour problems among adults
with intellectual disabilities. A total population study in Orebro County, Sweden.
Research in Developmental Disabilities, 34, 1346–​1356.
Matson, J. L., Wilkins, J., & Macken, J. (2008) The relationship of challenging behaviors
to severity and symptoms of autism spectrum disorders. Journal of Mental Health
Research in Intellectual Disabilities, 2(1), 29–​44.
McClean, B., Dench, C., Grey, I. M., Shanahan, S., Fitzsimmons, E. M., Hendler, J.,
& Corrigan, M.(2005) Person focused training: A model for delivering positive
behavioural supports to people with challenging behaviours. Journal of Intellectual
Disability Research, 49(5), 340–​352.
McClean, B., Grey, I. M., & McCracken, M. (2007). An evaluation of positive behavioural
support for people with very severe challenging behaviours in community-​based
settings. Journal of Intellectual Disabilities, 11, 1–​21.
McClean, B., & Ian Grey, I. M. (2012). A component analysis of positive behaviour sup-
port plans. Journal of Intellectual & Developmental Disability, 37(3), 221–​231.
McClintock, K., Hall S., & Oliver C. (2003). Risk markers associated with challenging
behaviours in people with developmental disabilities: A meta-​analytic study. Journal
of Intellectual Disability Research, 47, 405–​416.
McGrew, J. H., Ruble, L. A., & Smith, I. M. (2016). Autism spectrum disorder and evi-
dence‐based practice in psychology. Clinical Psychology: Science and Practice, 23(3),
239–​255.
McKenzie, K. (2011). Providing services in the United Kingdom to people with an intel-
lectual disability who present behaviour which challenges: A review of the literature.
Research in Developmental Disabilities, 32, 395–​403.
McKenzie, K., & Patterson, M. (2010). The evaluation of an assertive outreach team:
Implications for challenging behaviour. British Journal of Learning Disabilities,
38(4), 319–​327.
106

106 P sychological T herapies for A dults W ith A utism

Meyer, L. H., & Evans, I. M. (1989). Nonaversive intervention for behavior problems: A
manual for home and community. PH Brookes.
Michael, J. (1993). Establishing operations. The Behavior Analyst, 16(2), 191–​206.
Miltenberger, R. G., Valbuena, D., & Sanchez, S. (2019). Functional assessment of chal-
lenging behavior. Current Developmental Disorders Reports, 6, 202–​208.
Monzale, M., & Horner, R. H. (2020). The impact of contextual fit enhancement protocol
on behavior support plan fidelity and student behavior. Behavioral Disorders, 46(4),
267–​278.
O’Neill, R. E., Albin, R. W., Horner, R. H., Storey, K., & Sprague, J. R. (2014). Functional
assessment and program development. Nelson Education.
Rojahn, J., Rowe, E. W., Sharber, A. C., Hastings, R., Matson, J. L., Didden, R., Kroes, D.
B. H., & Dumont, E. L. M. (2012). The Behaviour Problems Inventory—​Short Form
for individuals with intellectual disabilities: Part I: Development and provisional
clinical reference data. Journal of Intellectual Disability Research, 56(5), 527–​545.
Schalock, R. L., Keith, K. D., Hoffman, K., & Karan, O. C. (1989). Quality of life: Its
measurement and use. Mental Retardation, 27, 25–​31.
Scott, T. M., & Cooper, J. T. (2017). Functional behavior assessment and function-​
based intervention planning: Considering the simple logic of the process. Beyond
Behavior, 26(3), 101–​104.
Smith T. (2013). What is evidence-​based behavior analysis? The Behavior Analyst,
36(1), 7–​33.
Sprague, J. R., & Horner, R. H. (1995). Functional assessment and intervention in com-
munity settings. Mental Retardation & Developmental Disabilities Research Reviews,
1, 89–​93.
Sugai, G., & Horner, R. H. (2020). Sustaining and scaling positive behavioral interventions
and supports: Implementation drivers, outcomes, and considerations. Exceptional
Children, 86(2), 120–​136.
Stahmer, A. C., Collings, N. M., & Palinkas, L. A. (2005). Early intervention practices
for children with autism: Descriptions from community providers. Focus on Autism
and Other Developmental Disabilities, 20(2), 66–​79.
Tanner, B. A., & Zeiler, M. (1975). Punishment of self‐injurious behavior using aromatic
ammonia as the aversive stimulus. Journal of Applied Behavior Analysis, 8(1), 53–​57.
Webber, L., McVilly, K., Fester, T., & Chan, J. (2011). Factors influencing quality of
behaviour support plans and the impact of plan quality on restrictive intervention
use. International Journal of Positive Behavioural Support, 1(1), 24–​31.
Wolfensberger, W. P., Nirje, B., Olshansky, S. Perske, R., & Roos, P. (1972). The prin-
ciple of normalization in human services. Wolfensberger Collection. https://​
digitalcommons.unmc.edu/​wolf_​books/​1
Vollmer, T. R., & Iwata, B. A. (1992). Differential reinforcement as treatment for be-
havior disorders: Procedural and functional variations. Research in Developmental
Disabilities, 13, 393–​417.
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Cognitive Behavior Therapy

X I E Y I N C H E W, A N N O Z S I VA D J I A N ,
M AT T H E W J . H O L L O C K S , A N D I L I A N A M A G I AT I ■

KEY CONSIDERATIONS

• Neurocognitive differences and higher rates of vulnerability experiences

in people with autistic increase their vulnerability to mental health
difficulties.
• Cognitive Behavior Therapy (CBT) supports people to change their
unhelpful thinking patterns and behaviors to more adaptive ways of
thinking about, and responding to, distressing experiences and situations.
• The highly structured, logical, and here-​and-​now focus of CBT
may make it a suitable and helpful approach for autistic adults with
appropriate adaptations.
• Adaptations at every stage of CBT are important to support autism-​
related differences, needs, and preferences.
• Autistic clients may present with diverse and varied functioning in the
social, communication, sensory, and neurocognitive domains with large
differences between and within individuals; it is therefore important not
to make assumptions about each client and to use adaptations flexibly
and tailor them individually to each client.
• Many autistic adults have had substantial exposure to stressful,
invalidating and/​or threatening environments; therefore, it is important
that clinicians utilize the CBT techniques while considering first whether
the clients’ thoughts and behaviors are in fact adaptive and should be
accepted and encouraged, rather than being targeted for intervention.

Cognitive behavior therapy (CBT) is a goal-​oriented, usually short-​term therapy

(on average 6–​20 sessions) informed by cognitive and behavioral theories of
human behavior and psychopathology. CBT is based on a few central ideas: (a)
our cognitions or thoughts, emotions or feelings, and behaviors or responses are
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interlinked; (b) unhelpful thinking styles and responses toward distressing

experiences contribute to the development and maintenance of mental health
difficulties, and (c) distressing emotions can reinforce, and are in turn amplified
by, the unhelpful thinking styles and behaviors in a vicious cycle, maintaining
mental health difficulties (Westbrook et al., 2011).
At the cognitive level, CBT addresses unhelpful patterns of three levels of
cognition: negative automatic thoughts (NATs), core beliefs, and dysfunctional
assumptions (DAs; Beck, 2020; Westbrook et al., 2011). NATs are thoughts
relating to specific situations that happen quickly and without effort (e.g., “They
think I am weird” or “I can’t do this”). Core beliefs represent a person’s “deeper,”
absolute and overgeneralized ways of thinking (e.g., “I am unlovable,” “Others will
hurt me”). DAs are unrealistic attitudes or rules for living, often representing an
unhelpful attempt for individuals to overcome their negative core beliefs (e.g., for
someone with the core belief “I am unlovable,” a relevant DA may be, “If I always
please other people, then they will love me”).
At the behavioral level, CBT aims to identify, understand, and replace un-
helpful behaviors relating to withdrawal, avoidance, reassurance seeking or safety
seeking, all of which reduce distress in the short-​term, but perpetuate this in the
longer-​term (Salkovskis, 1991). CBT therefore aims to support people to be-
come their own therapist by supporting them to develop their own knowledge,
skills, and tools to change their unhelpful thinking patterns and behaviors (Fenn
& Byrne, 2013). While CBT incorporates early life events in understanding the
origin of the difficulties, these early events are not necessarily processed during
treatment; instead, the focus of CBT is on evaluating and developing alternative,
more balanced thoughts and responses in the present.

THE EVIDENCE BASE FOR CBT IN NON -​

AUTISTIC ADULTS

CBT has a well-​ established evidence base (David et al., 2018). It is often
recommended as a first-​line psychological intervention for many mental health
conditions, including anxiety disorders, depression and bipolar disorder,
obsessive compulsive disorder (OCD), and posttraumatic stress disorder (PTSD;
National Institute for Health and Care Excellence [NICE], 2011). CBT is at least
as effective as, or more effective than, other interventions (e.g., psychodynamic
therapy, interpersonal therapy) and more effective than waitlist or nonspecific
controls (Butler et al., 2006; Cuijpers et al., 2013; Hofmann et al., 2012).

MAIN CBT STRATEGIES AND TECHNIQUES

CBT can be delivered through face-​to-​face individual or group sessions, and

also through guided self-​ help approaches or computerized/​ online delivery
(Cuijpers et al., 2019). Commonly used CBT strategies include psychoeducation;
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Cognitive Behavior Therapy109

collaborative formulation; behavior-​focused strategies, such as behavioral activa-

tion, relaxation training, and graded exposure/​behavioral experiments; and cog-
nitively focused strategies, such as cognitive restructuring, problem-​solving, and
behavioral experiments (Beck, 2020).

CBT FOR AUTISTIC ADULTS

Mental health difficulties are considerably more prevalent in autistic people

compared to the general population (Hollocks et al., 2019; Lai et al., 2019). Various
neurocognitive differences have been proposed to account for these higher prev-
alence rates, including alexithymia (difficulties identifying and describing one’s
own and others’ emotions; Bird & Cook, 2013); emotional regulation (Cai et al.,
2018); information processing and thinking styles, such as intolerance of un-
certainty (IU; Boulter et al., 2014); cognitive inflexibility (i.e., Ozsivadjian et al.,
2020); and negative processing biases (e.g., Hollocks et al., 2016). Autistic people
are also known to experience high rates of victimization, social isolation, and
discrimination, which also contribute to more mental health difficulties (Gaus,
2011a; Griffiths et al., 2019; South & Rodgers, 2017). Such experiences can, and
often do, lead to the development of negative beliefs and assumptions, such as
“I am weird” or “incompetent,” “others are not to be trusted,” or “if I keep away
from people, I won’t get hurt”). In stressful events, these beliefs are activated, and
autistic people often experience distressing emotions which may then be fur-
ther perpetuated by unhelpful thinking and behavioral patterns. CBT therefore
has the potential to be helpful to autistic people and co-​occurring mental health
difficulties.
However, some reservations in relation to offering CBT to autistic people have
been expressed by professionals (see Maddox et al., 2019, 2020). For example,
there were initial concerns that core autism-​related characteristics could poten-
tially limit the suitability, acceptability, or effectiveness of CBT, such as in relation
to the therapeutic alliance and engagement (Anderson & Morris, 2006) and in
identifying, evaluating, and/​or shifting their feelings and thoughts (Gaus, 2011a,
2011b; Spain, 2019). Yet the highly structured, logical, and here-​and-​now focus of
CBT may align well with the needs and preferences of autistic adults and could
lend itself to being a suitable and helpful approach for them with appropriate
adaptations (Spain & Happé, 2020).

THE EVIDENCE BASE FOR CBT FOR

AUTISM PEOPLE

Empirical research on the application of CBT with autistic people has largely been
conducted in children and adolescents, but there is a growing number of studies
in adult populations (see Weston et al., 2016). Two systematic reviews on the
­effectiveness of CBT for autistic adults (Benevides et al., 2020; Spain, 2019) looked
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at 15 studies (a combination of four randomized controlled trials [RCTs], other

intervention studies, and case studies) involving a total of 301 autistic adults. The
majority focused primarily on co-​occurring mood and anxiety difficulties (in-
cluding social anxiety and OCD). Overall, CBT, whether delivered individually or
in groups, was effective for improving self-​and clinician-​rated mood and anxiety
and can be considered an emerging evidence-​based approach for autistic adults
(Benevides et al., 2020; Spain, 2019). To our knowledge, no meta-​analysis of CBT
for autistic adults has been conducted to date. However, studies to date have
primarily excluded autistic adults with an intellectual disability and routinely
excluded more complex mental health conditions, such as psychosis, bipolar dis-
order, suicidality, and substance misuse (Spain, 2019), which limits conclusions
about the effectiveness of CBT for autistic adults with intellectual disabilities and/​
or more complex mental health difficulties.

ADAPTATIONS/MODIFICATIONS TO CBT FOR

AUTISTIC ADULTS

Based on the existing empirical literature, we outline in the sections that follow
recommended adaptations for different stages of the CBT process (for more
details, see Anderson & Morris, 2006; Blainey, 2019; Kerns et al., 2016, Maddox
et al., 2020; NICE, 2012; Russell et al., 2019; Spain & Happé, 2020); these are
illustrative rather than exhaustive and will need to be individually considered
for different clients, as not all adaptations will suit or be needed with all autistic
adults.

Engagement, Rapport, and Therapist Communication

Therapists may need to spend more time learning how each of their autistic
clients communicates in order to form a strong therapeutic relationship. For
example, eye contact or conveying emotion through facial expressions may be
uncomfortable or difficult for some autistic adults. It is also important to dis-
cuss the client’s interests and insights into their own neurodiverse differences
as a way to build rapport. Some clients may need additional time to process
verbal information and concepts and to formulate a response. Clinicians will
need to be patient and comfortable with possible silences and slower pacing.
Asking closed questions may be helpful, if the open/​S ocratic method of
questioning does not elicit sufficient information. Language use may need
to be more specific, concrete, and direct with some clients (i.e., the use of
metaphors, ambiguity, and hypothetical situations may need to be reduced
or explained more explicitly), but not with others who make excellent use of
metaphor, and therefore any adaptations will need to be individually tailored
and used flexibly.
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Cognitive Behavior Therapy111

CBT Assessment

The first few CBT sessions, when assessment usually takes place, may be stressful
or confusing for some autistic clients. Providing information in advance about
what to expect is helpful. Clinicians may need to conduct assessment over sev-
eral sessions to build rapport and to gain a clear understanding of the presenting
issues, including how autism-​related experiences potentially contributed to the
clients’ current difficulties, the clients’ own understanding and experience of their
autism, and their unique profile of strengths, interests, and associated needs and
difficulties. Therefore, therapists must have a good understanding of autism and
its heterogeneity. As clients may have idiosyncratic ways of describing thoughts
and emotions, it may be helpful to operationalize and use the clients’ own termi-
nology. Significant others could be invited, with the client’s permission, for sup-
port and to contribute additional information and perspectives to the assessment.
CBT assessment often includes the completion of standardized rating scales in
addition to clinical interviews and observations. When these are used, it is im-
portant to help autistic clients clarify the scale’s items as needed. Ratings scales
may be used as a starting point, with follow-​up or clarifying questions asked to
try to tease out autism-​related from other experiences (see Chew et al., 2020, for
clarifying OCD and social anxiety scale items). Clinicians should be pragmatic
when interpreting ratings from existing screening measures, as their validity has
not yet been established for autistic people.

Practical Adaptations to CBT Delivery

Practical adaptations to minimize demands, meet autism-​related needs, or reduce

unnecessary stress/​anxiety may also be necessary. It will be important at the outset
to set clear and shared expectations about therapy with the clients and signifi-
cant others regarding the number, frequency and duration of sessions offered. An
agenda can collaboratively be agreed upon, and regular appointments with a sim-
ilar structure for each session can be provided. In terms of sensory sensitivities,
it will be helpful to ask about and accommodate these in-​session and at waiting
areas (e.g., using the same clinic room, reducing crowding, dimming the lights,
etc.). Clinicians will also need to be flexible with session duration: shorter sessions
could be offered to some clients, while longer/​additional time, for example to pro-
cess information and for inclusion of regular breaks, may be needed for others.

Goal Setting

Goals for CBT should be functional, respectful, and relevant for autistic adults
and should address co-​occurring emotional or behavioral difficulties, so as to
improve well-​being, independence, and/​or quality of life. Based on the client’s
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112 P sychological T herapies for A dults W ith A utism

presenting difficulties and autism-​informed formulation, shared specific, real-

istic, and measurable goals need to be set collaboratively and explicitly. However,
executive functioning (EF) difficulties may make goal setting more difficult for
some clients. So clinicians may need to spend more time than usual developing
therapy goals and providing suggestions and help with generating alternatives.
Additionally, some clients may not be as motivated or may experience anxiety/​
concerns about change. In this case, it may be helpful to discuss the “pros and
cons” of certain changes/​goals in relation to their presenting difficulties and life,
to help them with decision-​making.

CBT Formulation

The collaborative CBT formulation would need to be specifically adapted to in-

tegrate autism-​related neurocognitive and psychosocial vulnerabilities and life
events in the conceptualization of the development and maintenance of mental
health problems (see Blainey, 2019, for anxiety; Gaus, 2011a for developmental
autism-​informed CBT model of anxiety/​depression; see also Spain & Happé,
2020). The therapist should periodically review the formulation with the client to
ensure they have a continuing shared understanding. Additionally, it will be im-
portant to highlight the client’s strengths, skills, resilience, and protective factors
in the formulation. It may be helpful to discuss with the client the possibility of
sharing the formulation with significant others so that they also understand the
therapy rationale, particularly if significant others respond to the client’s distress
in unhelpful ways.

CBT Intervention Strategies or Techniques

General
Throughout the intervention, therapists may need to use more visual aids/​
tools (e.g., written session agenda, worksheets, thought bubbles) to support
communication and understanding. Incorporating their client’s interests into
sessions may also increase engagement (e.g., using apps with a client who is
tech-​savvy; using different art expressions with an artistic client; incorporating
examples from Harry Potter for the client who is passionate about this). As
some autistic people may benefit from additional support, it may be helpful
to involve other providers, family, friends, or carers when helpful and agreed
to by the client, while bearing in mind that for other clients such involvement
may not be needed or may even negatively impact their self-​determination and
independence.

Psychoeducation
Emotional literacy is a necessary, important foundation for the rest of the CBT
work. Thus, it is important to spend more time (perhaps a few sessions) on
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Cognitive Behavior Therapy113

psychoeducation about autism, emotions, and socialization to the CBT model for
the clients who may have difficulties with interoception or identifying emotions,
in order to strengthen skills in emotional awareness, particularly in supporting
the individual to identify and label their emotions (e.g., the physical and behav-
ioral cues) and developing a joint language for these concepts. Therapists may
need to explore flexible and creative approaches to explain concepts, for example
using drawings, images, or computers.

Cognitive Restructuring
Neurocognitive differences may make it difficult for some clients to engage in
cognitive strategies. Some clients may feel they are being “persuaded” to change
their thinking and may be uncomfortable with this. If clients find it difficult
to evaluate/​challenge negative thinking, therapists can try alternative strategies
such as redirecting attentional focus, mindfulness, problem solving, and val-
idation of negative cognitions that may indeed be realistic as well as negative
(Blainey, 2019). It may also be helpful to place more emphasis on behavioral
change, rather than targeting cognitions, and using the behavioral change as
the starting point for cognitive work. Adding greater structure and making
cognitive concepts more concrete may also be important—​for example, pro-
viding worksheets listing helpful and unhelpful thoughts. Additionally, allowing
multiple-​choice options (e.g., a list of common unhelpful thoughts from which
to choose) to reduce the pressure to generate novel solutions may be helpful.
It is crucial to understand that many autistic adults have had substantial expo-
sure to stressful and/​or invalidating environments and therefore their thoughts
about themselves, others, or the world may have served an adaptive function. It
is important that therapists do not invalidate their clients’ lived-​in experiences
through cognitive restructuring, but rather explore what experiences may have
led to these thoughts being developed in the first place as well as ways in which
clients can think about themselves and others that are more balanced and
helpful to them.

Behavioral Strategies
Because many autistic individuals prefer routine and certainty, changes during
CBT may trigger anxiety or concern. New behaviors also require planning and
flexibility, which may be challenging for some clients. Explaining clearly the ra-
tionale and aims of behavioral work may make this aspect of therapy more per-
sonally meaningful for the client. Therapists should take a graded approach to
introducing changes in behavior, breaking these down into smaller, more man-
ageable chunks. It is important also to scaffold and support behavior change in
CBT through, for example, modeling and role playing new skills and behaviors
during sessions and as much as possible in real-​world settings. Encouraging
clients to make coping cards, or having phone or app reminders to cue the use
of coping strategies or to track mood, may also reduce additional cognitive
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114 P sychological T herapies for A dults W ith A utism

demands. Additionally, teaching skills and coping strategies to augment CBT if

indicated, such as emotion regulation, problem solving, organizational skills, as-
sertiveness, and managing uncertainty may be helpful on an individualized basis
for some clients.
As with cognitive restructuring, many behaviors adopted by au­tistic people are
not safety or avoidance behaviors, but rather appropriate, helpful, and needed
accommodations to their differences and needs. For this reason, the therapist
must work together with the client to identify which behaviors are essential and
helpful for the client’s well-​being and which are unhelpful. For example, wearing
noise-​canceling headphones to manage sensory needs, or declining some social
invitations, are in all likelihood appropriate accommodations to overwhelming
sensory and social environments to prevent burnout and to respect individual
preferences and choices. Other behaviors, however, may be unhelpful and will
maintain the client’s low mood or anxiety; for example, declining an invitation
from a much loved close friend to go for a walk in the forest, previously the client’s
favorite activity, may be avoidance behavior stemming from low mood, and thus
an appropriate behavior to target in behavioral work.

Homework
Initially, clinicians may need to be somewhat more direct and offer suggestions
for homework, encouraging the client to pick, rather than generate, ideas while
setting attainable homework goals. They need to discuss clearly with the clients
about the “who,” “what,” “where,” “when,” and “how” of homework, as well as
possible obstacles to completion and solutions. Clinicians may also support
some clients’ cognitive/EF needs by creating written instructions, routines,
reminders, and checklists if and as needed. Additionally, when clients agree,
trusted others can support activity schedules or behavioral experiments be-
tween sessions.

Managing Endings
To reduce potential anxiety, clinicians should be explicit about the number of ses-
sions to be offered and discuss/​plan endings in advance. As in traditional CBT, it is
important to review progress and develop a relapse prevention “blueprint.” When
indicated, a cohesive handover with other services that will continue supporting
the client is helpful. As autism is a lifelong condition with high rates of recurrence
of anxiety and mood difficulties, clinicians should be mindful that some clients
may need to start and resume CBT several times and that this is not in any way an
indication of failure of the clinician, client, or intervention.

CASE STUDY

Brief Background and Reason for CBT Referral

Jo is a 28-​year-​old woman with a diagnosis of autism since early childhood

and a history of expressive language difficulties. She was referred to a clinical
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Cognitive Behavior Therapy115

psychologist after a brief period of hospitalization due to depression. She also

frequently became panicky in social situations and everyday situations, such
as engaging in a hobby or cooking a meal, where there was a risk of perceived
failure.

Brief Relevant History

Jo had attended a number of schools, including a mainstream school followed by

a special educational need school for her secondary education. One particularly
difficult period for her was being held back a year in her mid-​teens to catch up
academically, which made her feel, in her words, “stupid.” She also had memories
of people at home and school becoming irritated with her for not understanding
or keeping up. After school, she became a primary school teaching assistant and
at the time of the referral she was working as a part-​time nursery assistant in a job
she had held for some months. She had few friends. Jo enjoyed creative activities
in her spare time, although at the time of referral these had tailed off to nonex-
istent due to her anxieties about failing. In terms of her autism-​related differences,
Jo became easily overwhelmed in loud places or in groups of more than a few
people.

Goals in CBT

Jo’s goals were to be less anxious in social situations, to be able to deal with her
feelings better, and to be able to talk to people more easily. She specifically wanted
to resume cooking meals for her family and roommate and to be able to talk to
strangers to ask questions when she was out in the community. Therefore, specific
goals included “Research and cook two meals per week for my family,” “Begin
and complete a creative activity,” and “Ask at least one question of a sales assistant
when I am in a shop.” She was encouraged to write her thoughts/​reflections and
also rate her anxiety before and after each activity.

CBT Formulation

Social situations such as transactions in a shop, or large family gatherings, fre-

quently triggered NATs such as “I never know what to say” and “People will
think I’m stupid.” Everyday activities such as cooking or artistic pursuits trig-
gered thoughts such as “I can’t do this, what’s wrong with me” and “I’m useless.”
Dysfunctional assumptions included “It’s better to reject people, before they reject
you” and “I have to do things perfectly, otherwise I will have failed,” while her core
beliefs were “I’m useless” and “People don’t like me.” Autism-​related experiences
and/​or differences contributing to these cognitions included experiences of being
socially rejected and teased at school and feeling “stupid” for having to repeat a
year of school when she was 13 years old.
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116 P sychological T herapies for A dults W ith A utism

CBT Work

CBT followed a fairly standardized approach, developing a collaborative formula-

tion and identifying key thoughts and beliefs, while taking into account language
difficulties and reduced cognitive flexibility, which Jo accepted was a feature that
affected her interactions with people. For example, she found it very difficult to
accept when people around her asked her questions about her choices, perceiving
this as criticism. Jo and her therapist set weekly behavioral experiments, to test
out alternative explanations and develop distress tolerance skills. For example, Jo
set herself a task of cooking more family meals, both to test out whether she would
fail at the task of following a recipe, and also to learn to tolerate the distress this
activity caused her, as well as to accept others’ compliments of her cooking, which
she found excruciating and usually rejected.
In terms of adaptations to “traditional” CBT, the sessions were carefully paced,
allowing time for language processing difficulties. Jo was also encouraged to keep a
notebook and bring it with her to each session, to record key points and strategies
discussed. Jo’s parents were also intermittently involved. For example, while it was
all-​too-​easy for adults around her to talk over her and finish her sentences for her,
given her expressive language difficulties, her parents were enabled to give Jo time
to speak and to encourage others in her family to do so.
During the therapeutic process, we evaluated and challenged negative thoughts
and assumptions, identifying the inertia caused by thoughts such as “there’s
no point trying this, as I will fail” and also breaking negative cycles caused by
thoughts such as “I may as well reject them, because they’ll end up rejecting me.”
Collectively, these new learning experiences were also used to construct a new
narrative and identity, encouraging Jo to accept that she is no longer the teenager
who felt stupid for being held back a year, but now an independent adult, who
requires support for some of her needs, but who is also competent and able to
overcome many difficulties, as well as a warm and engaging person. A key part
of this new narrative was the inclusion of her neurodiverse characteristics as
strengths and differences, rather than deficits. As an example, reduced flexibility
may on one hand present some social challenges for Jo, but may also contribute to
higher determination to complete a task, once Jo had started it.
After 12 sessions, Jo’s mood had improved on formal self-​report screening meas-
ures and also qualitative observations from herself and her parents. She remained
socially anxious, but she was able to cook meals for herself and her family sev-
eral times per week, resume some of her art pursuits, and approach people she
didn’t know with more confidence. Her subjective units of anxiety distress reduced
from 8/​10 at the beginning to 4/​10 toward the end of therapy. She also hoped and
planned how she would continue to build on these skills going forwards.

CONCLUSION

CBT is a highly structured, practical, and present-​focused approach that is rel-

evant and suitable for autistic adults with co-​ occurring mood and anxiety
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Cognitive Behavior Therapy117

difficulties. The general consensus in the emerging evidence base and clinical
practice is that individualized adaptations are recommended with autistic adults
for different stages of the CBT process. Further research into the effectiveness of
such adaptations, as well as into the effectiveness of CBT for other co-​occurring
mental health conditions other than depressive and anxiety-​related difficulties, is
needed.

REFERENCES

Anderson, S., & Morris, J. (2006). Cognitive behaviour therapy for people with Asperger
syndrome. Behavioural and Cognitive Psychotherapy, 34(3), 293–​303.
Beck, J. S. (2020). Cognitive behavior therapy: Basics and beyond (3rd ed.). Guilford Press.
Benevides, T. W., Shore, S. M., Andresen, M.-​L., Caplan, R., Cook, B., Gassner, D. L.,
Erves, J. M., Hazlewood, T. M., King, M. C., Morgan, L., Murphy, L. E., Purkis, Y.,
Rankowski, B., Rutledge, S. M., Welch, S. P., & Wittig, K. (2020). Interventions to
address health outcomes among autistic adults: A systematic review. Autism, 24(6),
1345–​1359.
Bird, G., & Cook, R. (2013). Mixed emotions: The contribution of alexithymia to the
emotional symptoms of autism. Translational Psychiatry, 3(7), e285–​e285.
Blainey, S. (2019). General anxiety. In E. Chaplin, D. Spain, & C. McCarthy (Eds.).
A clinician’s guide to mental health conditions in adults with autism spec-
trum disorders: Assessment and interventions (pp. 97–​110). Jessica Kingsley
Publishers.
Boulter, C., Freeston, M., South, M., & Rodgers, J. (2014). Intolerance of uncertainty as a
framework for understanding anxiety in children and adolescents with autism spec-
trum disorders. Journal of Autism and Developmental Disorders, 44(6), 1391–​1402.
Butler, A. C., Chapman, J. E., Forman, E. M., & Beck, A. T. (2006). The empirical status
of cognitive-​behavioral therapy: A review of meta-​analyses. Clinical Psychology
Review, 26(1), 17–​31.
Cai, R. Y., Richdale, A. L., Uljarević, M., Dissanayake, C., & Samson, A. C. (2018).
Emotion regulation in autism spectrum disorder: Where we are and where we need
to go. Autism Research, 11(7), 962–​978.
Chew, X. Y., Leong, D.-​J., Khor, K. M., Tan, G. M. Y., Wei, K.-​C., & Magiati, I. (2021).
Clarifying self-​report measures of social anxiety and obsessive-​compulsive disorder
to improve reporting for autistic adults. Autism in Adulthood, 3(2), 129–​146.
Cuijpers, P., Berking, M., Andersson, G., Quigley, L., Kleiboer, A., & Dobson, K. S.
(2013). A meta-​analysis of cognitive-​behavioural therapy for adult depression,
alone and in comparison with other treatments. The Canadian Journal of Psychiatry,
58(7), 376–​385.
Cuijpers, P., Noma, H., Karyotaki, E., Cipriani, A., & Furukawa, T. A. (2019). Effectiveness
and acceptability of cognitive behavior therapy delivery formats in adults with de-
pression: A network meta-​analysis. JAMA Psychiatry, 76(7), 700–​707. https://​doi.
org/​10.1001/​jamapsychiatry.2019.0268
18

118 P sychological T herapies for A dults W ith A utism

David, D., Cristea, I., & Hofmann, S. G. (2018). Why cognitive behavioral therapy is the
current gold standard of psychotherapy. Frontiers in Psychiatry, 9(4).
Fenn, K., & Byrne, M. (2013). The key principles of cognitive behavioural therapy.
InnovAiT, 6(9), 579–​585.
Gaus, V. L. (2011a). Adult Asperger syndrome and the utility of cognitive-​behavioral
therapy. Journal of Contemporary Psychotherapy, 41(1), 47–​56.
Gaus, V. L. (2011b). Cognitive behavioural therapy for adults with autism spectrum dis-
order. Advances in Mental Health and Intellectual Disabilities, 5(5), 15–​25.
Griffiths, S., Allison, C., Kenny, R., Holt, R., Smith, P., & Baron-​Cohen, S. (2019). The
Vulnerability Experiences Quotient (VEQ): A study of vulnerability, mental health
and life satisfaction in autistic adults. Autism Research, 12(10), 1516–​1528.
Hofmann, S. G., Asnaani, A., Vonk, I. J., Sawyer, A. T., & Fang, A. (2012). The efficacy
of cognitive behavioral therapy: A review of meta-​analyses. Cognitive Therapy and
Research, 36(5), 427–​440.
Hollocks, M. J., Lerh, J. W., Magiati, I., Meiser-​Stedman, R., & Brugha, T. S. (2019).
Anxiety and depression in adults with autism spectrum disorder: A systematic re-
view and meta-​analysis. Psychological Medicine, 49(4), 559–​572.
Hollocks, M. J., Pickles, A., Howlin, P., & Simonoff, E. (2016). Dual cognitive and bio-
logical correlates of anxiety in autism spectrum disorders. Journal of Autism and
Developmental Disorders, 46(10), 3295–​3307.
Kerns, C. M., Roux, A. M., Connell, J. E., & Shattuck, P. T. (2016). Adapting cognitive be-
havioral techniques to address anxiety and depression in cognitively able emerging
adults on the autism spectrum. Cognitive and Behavioral Practice, 23(3), 329–​340.
Lai, M.-​C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., Szatmari, P., & Ameis,
S. H. (2019). Prevalence of co-​occurring mental health diagnoses in the autism
population: A systematic review and meta-​analysis. The Lancet Psychiatry, 6(10),
819–​829.
Maddox, B. B., Crabbe, S., Beidas, R. S., Brookman-​Frazee, L., Cannuscio, C. C.,
Miller, J. S., Nicolaidis, C., & Mandell, D. S. (2020). “I wouldn’t know where to
start”: Perspectives from clinicians, agency leaders, and autistic adults on improving
community mental health services for autistic adults. Autism, 24(4), 919–​930.
Maddox, B. B., Crabbe, S. R., Fishman, J. M., Beidas, R. S., Brookman-​Frazee, L., Miller,
J. S., Nicolaidis, C., & Mandell, D. S. (2019). Factors influencing the use of cogni-
tive–​behavioral therapy with autistic adults: A survey of community mental health
clinicians. Journal of Autism and Developmental Disorders, 49(11), 4421–​4428.
National Institute for Health and Care Excellence. (2011). Common mental health
disorders: Identification and pathways to care (Clinical Guideline No. 123 [CG123]).
Retrieved December 1, 2020, from http://​www.nice.org.uk/​guidance/​cg123
National Institute for Health and Care Excellence. (2012). Autism spectrum disorder in
adults: diagnosis and management (Clinical Guideline No. 142 [CG142]). Retrieved
December 1, 2020, from http://​www.nice.org.uk/​guidance/​cg142
Ozsivadjian, A., Hollocks, M. J., Magiati, I., Happé, F., Baird, G., & Absoud, M. (2021). Is
cognitive inflexibility a missing link? The role of cognitive inflexibility, alexithymia
and intolerance of uncertainty in externalising and internalising behaviours in
young people with autism spectrum disorder. Journal of Child Psychology and
Psychiatry, 62(6), 715–​724.
19

Cognitive Behavior Therapy119

Russell, A., Jassi, A., & Johnston, K. (2019). OCD and autism: A clinician’s guide to
adapting CBT. Jessica Kingsley Publishers.
Salkovskis, P. M. (1991). The importance of behaviour in the maintenance of anxiety and
panic: A cognitive account. Behavioural Psychotherapy, 19(1), 6–​19.
South, M., & Rodgers, J. (2017). Sensory, emotional and cognitive contributions to anx-
iety in autism spectrum disorders. Frontiers in Human Neuroscience, 11(20).
Spain, D. (2019). Cognitive behaviour therapy. In E. Chaplin, D. Spain, & C. McCarthy
(Eds.). A clinician’s guide to mental health conditions in adults with autism spectrum
disorders: Assessment and interventions (pp. 290–​307). Jessica Kingsley Publishers.
Spain, D., & Happé, F. (2020). How to optimise cognitive behaviour therapy (CBT) for
people with autism spectrum disorders (ASD): A Delphi study. Journal of Rational-​
Emotive & Cognitive-​Behavior Therapy, 38(2), 184–​208.
Westbrook, D., Kennerley, H., & Kirk, J. (2011). An introduction to cognitive behaviour
therapy: Skills and applications (2nd ed.). SAGE Publications.
Weston, L., Hodgekins, J., & Langdon, P. E. (2016). Effectiveness of cognitive behavioural
therapy with people who have autistic spectrum disorders: A systematic review and
meta-​analysis. Clinical Psychology Review, 49, 41–​54.
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10

Mindfulness-​Based Interventions
K E L LY B . B E C K ■

KEY CONSIDERATIONS

• Research supports the efficacy of mindfulness-​based interventions

(MBIs) improving co-​occurring mental health symptoms and quality of
life in samples of adults with autism spectrum disorders (ASD).
• Emotion regulation (ER) is a likely mechanism of change in
mindfulness-​based interventions for adults with ASD.
• Clinicians with personal meditation practices are more adept at
adjusting mindfulness-​based interventions for adults with ASD.
• Most mindfulness-​based intervention literature adapts programs for use
with adults with ASD, particularly meditation length, session structure,
and simplified language.
• New evidence suggests that mindfulness-​based interventions may be
appropriate for adults with ASD without modification.
• Future research must address accessible mindfulness training and
implementation supports for providers interested in using mindfulness-​
based interventions for adults with ASD.

Mindfulness is an experience of present-​moment awareness that is cultivated

through meditation practices. Mindfulness has rapidly emerged as an evidence-​
based treatment for various physical, emotional, and behavioral conditions
(Gotink et al., 2015). Mindfulness-​based interventions (MBIs) may be ideally
suited to support adults with autism spectrum disorder (ASD), as they do not
require a high degree of insight or awareness, are experiential and repetitive in
nature, and can be tailored to a wide range of functioning. There is evidence
supporting the feasibility, acceptability, and efficacy of MBIs for improving
co-​occurring psychiatric symptoms and quality of life in samples of adults
with ASD (Beck, Greco, et al., 2020; Cachia et al., 2016; Hartley et al., 2019;
Kiep et al., 2014; Spek et al., 2010, 2013; White et al., 2018). Adults with ASD
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Mindfulness-Based Interventions121

experiencing impaired emotion regulation (ER) may respond well to MBIs.

Clinically elevated ER impairment is four times more common in ASD than
age-​equivalent peers, and it frequently underlies suicidality, hospitalization, and
mood disorders (Conner et al., 2020). ER is a mechanism of change in MBIs
(Gu et al., 2015) and there is emerging evidence that MBIs improve ER in ASD
samples (Beck, Conner, et al., 2020; Conner & White, 2018; Conner et al., 2019).
Individuals with ASD have unique cognitive needs that influence mindfulness
delivery, such as difficulty with abstract language, attention span, and internal
awareness (Beck, Conner, White, & Mazefsky, 2020). As such, this chapter
aims to provide a resource to current and future clinicians serving adults with
ASD. Mindfulness, mindfulness meditation, and MBIs are introduced and then
followed by a summary of empirical evidence supporting MBIs in samples of
adults with ASD. Common clinical delivery challenges and strategies are pro-
vided through a case study exemplar for clinicians interested in using MBIs with
adults with ASD.

WHAT IS MINDFULNESS?

Current applications of mindfulness have roots in centuries-​old teachings from

Guatama Buddha that have been modernized to fit into secular healthcare
(Hwang & Singh, 2016). In the scientific community, mindfulness is operationally
defined as “the awareness that emerges through paying attention on purpose, in
the present moment, and nonjudgmentally to the unfolding of experience mo-
ment by moment” (Kabat-​Zinn, 2006). Hwang & Singh provide a comprehensive
and thorough contextual history of mindfulness in their chapter reviewing MBIs
for individuals with intellectual disability (Hwang & Singh, 2016).
Nonjudgmental awareness can be described as a cognitive and emotional
distancing from an observed experience, in an impartial or neutral state
(Gunaratana, 2015). For instance, one would notice pain as “hot” or “sharp” rather
than labeling it as “undesirable” or “unbearable.” Nonjudgmental awareness has
been widely misunderstood in the proliferation of mindfulness, often cited simply
as “acceptance.” The English word acceptance implies consent or approval, leading
many to believe that practicing mindfulness means approving all experiences.
A more appropriate description is impartial acknowledgment of experiences
without labeling or judgment. This distinction is particularly relevant for use in
ASD given the tendency for literal language and concrete thinking.

MINDFULNESS MEDITATION

Mindfulness can be cultivated through meditation practice, which consists of

concentration exercises that train the mind to focus (Gunaratana, 2015). There
are many different meditation practice traditions, all with different religious
and philosophical roots (Gunaratana, 2015). Most contemporary MBIs used
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122 P sychological T herapies for A dults W ith A utism

in healthcare settings use practices from Vipassana meditation, also synony-

mous with “insight meditation” or “mindfulness meditation.” These meditations
are concentration practices that focus on direct, present-​moment experiences
and are commonly packaged together in MBIs without the original religious or
philosophical teachings (Crane et al., 2016). Common practices include aware-
ness of breathing or sitting meditation, walking meditation, body scans, and
mindful movement. Vipassana meditations are taught in sequence, beginning
with meditations focused on physical sensations (body scans, breathing) to build
awareness and then progressing to thought and emotion identification. This se-
quence allows individuals with limited insight or awareness (often adults with
ASD) to build concentration skills and awareness before attempting to work with
thoughts or emotions. Walking and movement meditations are easily tailored for
individuals with ASD and are often useful for individuals who engage in repeti-
tive movement behaviors. The Vipassana awareness of breathing meditation can
be substantially simplified for co-​occurring ASD and intellectual disability. Thus,
Vipassana meditations are uniquely applicable to individuals with ASD and guid-
ance is easily simplified without modifying the core practice.

MINDFULNESS-​BASED INTER VENTIONS

Jon Kabat-​Zinn introduced the first MBI, mindfulness-​based stress reduction

(MBSR), in 1979 for individuals with severe chronic pain conditions who were
not responding to medical and pharmaceutical intervention (Kabat-​Zinn, 2006;
Kabat-​Zinn et al., 1985). MBIs then gained traction as researchers explored the
use of mindfulness with other chronic health conditions, demonstrating ef-
ficacy of improved stress, depression, anxiety, and quality of life (Gotink et al.,
2015). Mindfulness has since exploded in popular Western culture as an exciting
and innovative mind-​body treatment to improve a variety of conditions with
biopsychosocial impairments (Hwang & Singh, 2016).
MBSR is a standardized, experiential group of 12–​30 of individuals who com-
plete eight weekly 2.5-​hour sessions, one 7.5 full-​day silent meditation retreat,
and learn Vipassana meditations. MBSR is considered evidence-​based for chronic
pain and has demonstrated large effects in stress reduction, reducing anxiety and
depression, and improving quality of life in samples of individuals with chronic
illness (e.g., cancer, cardiovascular disease) and mental health disorders (e.g., anx-
iety; Gotink et al., 2015).
Nearly all MBIs have been developed and adapted from MBSR, and most of
the MBIs that do not cite MBSR as a foundational model utilize the Vipassana
meditations taught in MBSR (Crane et al., 2016). Mindfulness-​based cognitive
therapy (MBCT) combines MBSR and cognitive behavioral therapy (CBT) to
treat individuals with recurrent major depressive disorder (Segal et al., 2002).
Acceptance and commitment therapy (ACT) and dialectical behavior therapy
(DBT) incorporate attitudes of mindfulness and nonjudgment but do not utilize
formal meditation practices (Baer, 2003; Cheisa & Malinowski, 2011). Chapters 11
123

Mindfulness-Based Interventions123

and 12 review emotion-​focused therapies (including ACT) and DBT for ASD
respectively.

MINDFULNESS TRAINING AND CLINICAL

DELIVERY

Despite the growing efficacy, MBIs pose significant dissemination and implemen-
tation challenges. MBI delivery and training is underresearched, and formal MBI
training pathways that do exist are expensive, take several years to complete, and
often involve multiple intensive trainings (7–​10 days), 10-​day silent meditation
retreats, and regular supervision. These training programs emphasize that experi-
ential learning and establishing a personal meditation practice are far superior to
didactic learning (McCown et al., 2011). While mindfulness training modalities
(experiential vs. didactic) have not been empirically tested, research has found
that clinicians with formal training and personal meditation practice deliver
MBIs with more skill, ultimately impacting clinical outcomes (Ruijgrok-​Lupton
et al., 2018). However, it is not feasible, practical, or sustainable for all clinicians
to complete formal mindfulness trainings. This is a challenge that researchers and
clinicians must collaboratively address as the field moves from research efficacy
to widespread community implementation. At a minimum, clinicians planning to
use MBIs should establish a personal meditation practice, either independently or
through the support of a formal course such as MBSR.

MINDFULNESS-​B ASED INTER VENTIONS FOR

ADULTS WITH ASD

While MBI research for adults with ASD is still relatively new, MBIs have
demonstrated comparable outcomes to other psychotherapy treatments, such as
CBT, for adults with ASD (Hartley et al., 2019; Sizoo & Kiuper, 2017). The MBIs
that have been developed and tested in adult ASD samples are reviewed in the
following sections.

Mindfulness-​Based Therapy—​Autism Spectrum (MBT-​AS)

Mindfulness-​based therapy—​autism spectrum, or MBT-​AS, has the most empir-

ical support for adults with ASD, with demonstrated efficacy in improving co-​
occurring anxiety and depression symptoms. Spek and colleagues developed this
group MBI by adapting MBSR into a 9-​week intervention with 2.5-​hour sessions
(Spek et al., 2010, 2013). MBT-​AS is a more structured version of MBSR with
an added didactic session, additional time for processing speed impairments,
and simplified language (e.g., the removal of metaphors). Pilot testing of MBT-​
AS established feasibility, satisfaction, and statistically significant improvement
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124 P sychological T herapies for A dults W ith A utism

in depressive symptoms at posttreatment (Spek et al., 2010). MBT-​AS was then

tested in a randomized controlled trial (RCT; n =​50) and demonstrated efficacy
in reducing depression, anxiety, rumination symptoms, and improving well-​being
(Kiep et al., 2014; Spek et al., 2013).
Subsequently, Sizoo and Kiuper slightly modified MBT-​AS into 13 weekly 90-​
minute group sessions with shortened meditation practices (2017). This version
of MBT-​AS was compared to CBT in an RCT (n =​59). Both MBT-​AS and CBT
demonstrated significant, large effect changes in depression, anxiety, and rumi-
nation (Sizoo & Kiuper, 2017). This suggests that MBT-​AS may be equivalent
to CBT in addressing co-​occurring mental health symptoms among adults with
ASD. One might consider MBT-​AS over CBT with adults who have difficulty
identifying thoughts, understanding abstract language, limited verbal compre-
hension and expression, or who did not respond to previous CBT treatment.

Mindfulness-​Based Stress Reduction

Prior to 2020, all published MBIs for adults with ASD were adapted specifi-
cally for ASD diagnostic characteristics. While the results were promising, this
limits widespread dissemination and implementation in a population that al-
ready experiences huge service gaps. Beck and colleagues tested the feasibility,
acceptability, and need for modification of traditional (i.e., nonadapted) MBSR
(Beck, Greco, et al., 2020). This small pilot found that MBSR was appropriate for
adults with ASD without intellectual disabilities (Beck, Greco, et al., 2020). All
participants (n =​12) completed the 7.5-​hour silent meditation retreat day and
reported high satisfaction with the group. Feasibility, acceptability, participant
satisfaction benchmarks were met, and the sample reported preliminary large ef-
fect size changes in positive outlook, quality of life, and mindfulness. While no
modifications were needed, the group leader made small clinical adjustments
and participants required supports (e.g., public transportation) outside of group
sessions.
Braden and colleagues conducted an RCT comparing MBSR to a stress reduc-
tion control group with a sample of adults with ASD (n =​28; Pagni et al., 2020).
MBSR was minimally adapted from 2.5-​to 2-​hour sessions and the full-​day re-
treat was eliminated, but the content was consistent with the standardized cur-
riculum and it was taught by a certified MBSR teacher. Participants in the MBSR
group reported significant reduction in self-​reported depressive symptoms and
corresponding neural changes in the middle cingulate cortex and higher order
cognitive brain regions were detected (Pagni et al., 2020).

Other Mindfulness-​Based Interventions

Conner & White designed the first brief MBI for adults with ASD. This brief MBI
consisted of six, 1-​hour individual therapy sessions to target emotion dysregulation
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Mindfulness-Based Interventions125

in a sample of adults with ASD (n =​9). This intervention was based on MBCT,
with modifications made to the intervention delivery (individualized), shortened
sessions (from 2.5 hours to 50 minutes), shortened meditation practices (from
1 hour to 20 minutes), simplified language, and psychoeducation on depression
was replaced with emotion regulation content (Conner & White, 2018). The study
demonstrated feasibility (100% retention), adequate fidelity, and acceptable treat-
ment satisfaction. Most participants reported reliable change in impulse con-
trol, access to emotion regulation strategies, or emotional acceptance (Conner &
White, 2018)
Gaigg and colleagues conducted an RCT that compared two self-​guided on-
line interventions, traditional CBT and brief MBCT, in a sample of adults with
ASD (n =​54; 2020). A readily available online MBCT program endorsed by
the National Health Service in the United Kingdom was used; thus, it was not
designed specifically for ASD. Participants completed 4 modules over 4 weeks
and received automated email reminders, notifications, and invitations to new
material and mindfulness practices. Many participants experienced clinically
significant improvements in anxiety symptoms in the MBCT (66.7%) and CBT
(57.1%) groups, with no significant differences between groups. There were
slightly more individuals who did not complete the CBT program compared to
the MBCT group.
The emotion awareness and skills enhancement (EASE) program is an MBI
developed and tested for adolescents and young adults (ages 12–​21) with ASD
and ER impairment (Conner et al., 2019). EASE is a 16-​week individual MBI
that incorporates cognitive strategies taught in MBCT but utilizes Vipassana
medi­tation practices drawn from MBSR. The open pilot established feasibility,
satis­faction, and preliminary efficacy, with large effect size changes in reduced
functional impairment, less maladaptive emotion regulation strategies, and
improved d ­ epression in an adolescent sample (n =​20). It is currently being tested
in an o­ ngoing RCT.
EASE is currently being adapted for individuals with co-​occurring ASD and
intellectual disabilities up to age 25, in a team-​based approach for caregivers
and participants (EASE-​ Teams). EASE-​ Teams uses Vipassana breathing and
walking meditations that have been significantly shortened (30 seconds long)
and simplified for adults with limited verbal ability. Meditations are taught and
repeated throughout sessions and clinicians work with families to incorporate
mindfulness into already established daily routines.

Summary of the Evidence

The current state of science suggests that there is potential to improve outcomes
for adults with ASD through MBIs. Most of the research utilizes group MBIs with
group sizes ranging from 7 to 12 individuals. Efficacy has been established for
improving co-​occurring depressive symptoms and quality of life in group MBIs,
with changes detected through self-​report and neurophysiological assessment.
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126 P sychological T herapies for A dults W ith A utism

More recent literature demonstrated preliminary feasibility and acceptability

using individual MBIs to improve ER among young adults with ASD. To date, two
studies have evaluated MBI programs that were not designed or modified specif-
ically for ASD (Beck, Greco, et al., 2020; Gaigg et al., 2020); both studies found
that the MBIs were appropriate for ASD and demonstrated preliminary efficacy in
improved mental health and quality of life. Despite this promising evidence, MBI
research is limited to feasibility and efficacy with pilot, quasi-​experimental, and a
few RCT designs (Hartley et al., 2019).
MBIs can be a good alternative to more traditional psychotherapy, such as
CBT, especially for clients who have a history of limited improvement in treat-
ment. MBIs can be individually tailored to ASD-​specific characteristics, com-
munication ability, and intellectual functioning (White et al., 2018). Clinicians
might consider MBIs for clients who present with limited insight, impaired ER,
or significant rumination or perseveration. The experiential meditation training
in MBIs can be helpful for clients who have difficulty with “talk therapy.” Adults
with ASD who have limited verbal skills or co-​occurring intellectual disability
are able to actively participate in modified Vipassana meditation practices. MBIs
have been used extensively in samples of adolescents with intellectual disability
(Hwang & Singh, 2016), providing opportunity for MBIs to be used with the
large population of adults with co-​occurring ASD and intellectual disability.
Finally, MBIs can be implemented in different environments in order to foster
generalization of skills.

Clinical Strategies for MBI Delivery

Adults with ASD have unique cognitive and social needs that can impact MBI
delivery (Beck, Conner, et al., 2020). Social challenges, such as limited social
reciprocity and difficulty with group interactions, can make group-​based MBIs
challenging for clinicians. Limitations in attention span, abstract language, and
awareness can also impact meditations and intervention delivery (Beck, Conner,
et al., 2020). In nearly all of the evidence summarized previously, research labs
utilized teams with extensive ASD experience and mindfulness experts. This level
of dual expertise is unlikely to occur in most community-​based service settings.
Thus, considerations and suggestions for clinicians utilizing MBIs with adults
with ASD are detailed in what follows and in Table 10-​1.

Mindfulness Meditations for Adults With ASD

Meditations are a core component of MBIs and allow for in-​vivo, experiential
practice to approach challenges and problems in new ways. Meditation guidance
is greatly enhanced by having familiarity with the meditations to make necessary
adjustments to meditation scripts moment by moment. For clinicians just starting
with MBIs, until comfortable it is much better to play a meditation recording and
practice with the client than to read from a printed meditation script.
 127

Table 10-​1 Suggested Adjustments for Utilizing MBIs With Adults With ASD
ASD Characteristic Challenge Practical Solution or Technique Exemplar Language
Slow processing speed Meditation instruction can be too Provide substantial empty space
fast; group processing makes it (long pauses) and slow the speed in
difficult to follow or share meditations.
Provide specific and repetitive “Now, bringing the attention to the
directions in meditation guidance. [breathing; left arm; chest].”
Lead the group in a brief exercise to
allow time to process.
Concrete thinking Meditation language Eliminate metaphors and provide “Bringing the attention to sensations of air
specific and repetitive meditation entering the nose and exiting the nose.”
guidance.
Difficulty with MBI group processing; listening and Provide concrete mindfulness inquiry “Please point to one sensation you noticed
unstructured speaking in dyads was difficult and discussion questions on paper. in your body.”
conversations uncomfortable Explicitly time and direct discussions. “When the bell rings, it’s your partner’s turn
to share.”
Limited social reciprocity Perseverating on past or excessive Re-​establish story-​telling guidelines at “I may stop stories so all can participate, and
& perseveration story-​telling during group beginning of each session. we can talk about things that are happening
right now.”
Stop participant with prompt and lead “I see we’re getting stuck on the past. Let’s
impromptu breathing meditation and pause and breathe together.”
inquiry.
Spatial awareness Difficulty maintaining one’s space Re-​establish “rules” before each session. “We are going to stay on our mat while we
during meditations complete this practice.”
Direct placement of yoga mats in room. Consider placing individual with spatial
difficulties near clinician.
(continued )
 128

Table 10-1 Continued

ASD Characteristic Challenge Practical Solution or Technique Exemplar Language

Sensory sensitivity Difficulty with sensory sensitivity Normalizing with psychoeducation on “Let’s find an area of your body that is
during meditations (e.g., sensory sensitivity in ASD. neutral. How about the bottom of your
background noise) Meditation suggestions to anchor feet?”
attention to neutral area during
heightened sensitivity.
Attention span Looking at phone during Lengthen meditation (>5 minutes) to “Noticing that the attention wandered, and
meditation; obvious inattention; allow thoughts to settle. gently bringing the attention back to the
visible impatience with the Maintain enough silence in meditation breathing.”
meditation but add extra guidance on brining
attention back to breathing.
Acknowledge boredom and inattention “Nice job noticing boredom. Where did you
during inquiry. feel that in your body?”
Incorporate movement meditations into
session.
Limited internal Not able to identify physical Model noticing basic physical “I noticed my breathing in my chest. What
awareness sensations, thoughts, or emotions sensations. did you notice?”
Suggest something observed during “I noticed you were scratching your arm.
inquiry. Did you notice itchiness?”
Incorporate external object and fade use “Feeling sensations of [Fluffy] rising and
as client builds awareness (e.g., stuffed falling on your chest.”
animal)
129

Mindfulness-Based Interventions129

Mindful inquiry, a brief discussion on meditation practice, occurs following

a meditation. The general process includes asking, “what did you notice in that
practice?” and a brief discussion. This discussion is intended to stay present-​fo-
cused on physical sensations, thoughts, or emotions noticed during the medi-
tation practice. It is common for clients with ASD to be unsure or not have any
sensations to notice during the meditation. Other clients may become overly an-
alytical about the meditation process, engage in story telling, or try to understand
the “why” behind a thought or emotion. A common mistake for clinicians new
to mindfulness is to ask too many follow-​up questions or to try to help the client
understand the “why.” Instead, clinicians can model responses (e.g., “I noticed
my breathing in my nose”) and encourage more meditations (e.g., “I see you’re
stuck; Let’s breathe together”). Engaging in thought challenging, problem solving,
discussions about past experiences, or explicit relaxation would be counter to
the theoretical framework of mindfulness (Crane, Kuyken, et al., 2012; Crane,
Brewer, et al., 2016).

Common MBI Challenges of Adults With ASD

Group MBIs have more social interaction in comparison to individual MBI ses-
sions and have the potential to be more cost-​effective. However, group MBIs
are also more challenging given social impairments that are characteristic of
ASD. Over-​correction for disruptive behaviors can be counterproductive to the
foundations of mindfulness. Instead of traditional prompting, reward systems, or
behavior training, it is recommended that clinicians use kind, repetitive reminders
throughout the sessions. Clinicians can also use brief meditation practices to in-
terrupt unwanted group behavior and reorient the group to present-​moment ex-
periential learning. Challenges and techniques for MBI group management are
detailed in Table 10-​1.
Other limitations common in ASD, such as perseveration, spatial awareness,
sensory sensitivity, attention span, and limited internal awareness, are likely to
emerge when utilizing MBIs with adults with ASD. Many of these limitations can
be addressed with minimal adjustments to the meditation practice, discussion, or
session structure without formal adaptation (Table 10-​1).

CASE STUDY

This case study presents information regarding a single MBSR group that consisted
of 12 adults with ASD (Full Scale IQ>70; Beck, Greco, et al., 2020). ASD-​spe-
cific mindfulness techniques utilized with two clients, Deborah and Freddy, are
presented in detail. Deborah is an adult Caucasian female diagnosed with ASD and
co-​occurring attention deficit/​hyperactivity disorder (ADHD). Deborah described
ER challenges that led to difficulty maintaining employment, social relationships,
and engaging in activities of daily living (i.e., grocery shopping). Freddy, an adult
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130 P sychological T herapies for A dults W ith A utism

Caucasian male diagnosed with ASD and co-​occurring generalized anxiety dis-
order, joined the MBSR group to improve “stress” and challenges maintaining em-
ployment due to “freezing” when stressed. Both clients participated in an MBSR
group that followed the standard curriculum and attended all sessions (Beck,
Greco, et al., 2020; Santorelli et al., 2017; Santorelli, 2001). Additional detail on the
procedures, methods, and analyses have been previously published (Beck, Greco,
et al., 2020).
Deborah had difficulty with limited social reciprocity and perseveration during
group interactions, and she would often escalate while describing her past neg-
ative experience. She had limited awareness and difficulty noticing her escala-
tion and perseveration in the moment. This behavior impacted group dynamics
because other participants were frustrated that she would frequently break the
“rules.” The clinician managed this by stopping her mid-​story and providing the
group with the instruction, “I see you are stuck. Let’s all bring our attention to the
breathing in this moment.” Deborah would occasionally get frustrated with the in-
terruption, but the instruction allowed her to practice meditation in the moment
of dysregulation and perseveration. As the group progressed, she was able to no-
tice her dysregulation in the moment without instructor prompting and reported
to generalize this skill in her daily life.
Freddy had difficulty with problem solving, organization of time, processing
speed, and ER, all of which impacted his group participation and required ad-
ditional supports. He needed to be encouraged to leave his house and come to
group at the start of each session (often 45 minutes late), as he would often freeze
in fear of being late and disrupting the group. Freddy benefited from text message
reminders (2x a week) to attend. During groups, Freddy needed extra time to or-
ganize his thoughts for group discussions and meditations. Vipassana meditations
can be easily simplified to remove metaphors, and the clinician added substan-
tially longer pauses and more silence into the meditations. During discussions,
the clinician led brief 30-​second breathing practices when it was Freddy’s turn
to talk so that he could gather his thoughts and share. His ability to gather his
thoughts and quickly share improved as the group progressed.
Deborah and Freddy both indicated very high satisfaction with the MBSR
program and reported substantial changes in quality of life, positive outlook,
­mindfulness, and anxiety. During exit interviews, Deborah described improved
ER as the greatest benefit of the MBSR group, which impacted her social
relationships and daily functioning:

It helped me communicate my needs and disappointments and things of that

nature before things get to be too bad. . . . The last couple meltdowns I still
had them, but I was able to explain myself and calm myself down. . . . Like say
the store is crowded and I can’t go in, I used to force myself no matter what
and now I think to myself do I really need to do this right now.

Freddy cited benefits that positively impacted daily functioning and employment:
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Mindfulness-Based Interventions131

Having quicker reaction time on tough situations. The getting that thinking
process started. That is a big help because there were days where I just freeze
all day because I didn’t know what to do. I’m infinitely more productive. . . .
I used to not have gotten to work until 3 and instead I have gotten to work at 1.

CONCLUSIO N

MBIs are promising evidence-​based treatment options for adults with ASD, with
demonstrated changes in co-​occurring depression, rumination, anxiety, ER, and
quality of life (Hartley et al., 2019). Much of the evidence supporting MBIs for
adults with ASD utilize group formats. Common adaptations include simplified
language, structural changes to sessions, and shortening meditation practices. The
experiential focus of MBIs allow for individual tailoring to communication skills
and cognitive functioning, and there is new research exploring the use of MBIs for
individuals with co-​occurring ASD and intellectual disabilities. Recent research
suggests that some adults with ASD may be able to participate in MBIs without
adaptation (Beck, Greco, et al., 2020; Gaigg et al., 2020). This has potential to in-
crease service options for adults with ASD, as some may be able to participate in
readily available community-​based MBIs.
Widespread dissemination and implementation of MBIs for ASD will re-
quire thoughtful implementation strategies and training programs. MBI training
pathways are arduous and are not traditionally incorporated into graduate school
curriculums. Clinicians can begin by engaging in a personal mindfulness med-
itation practice on their own or enrolling in a community-​based mindfulness
course (e.g., MBSR). ASD characteristics can influence MBI delivery but small
adjustments can be made without changing the meditation. Future research
should systematically explore the clinical delivery and training needs while bal-
ancing scientific rigor and real-​life context in order to test the effectiveness and
implementation of MBIs into community-​based settings for adults with ASD.
Funding Acknowledgment: This work was supported by the National
Center For Advancing Translational Sciences of the National Institutes of Health
under Award Number KL2TR001856 (Author: KB). The content is solely the re-
sponsibility of the author and does not necessarily represent the official views of
the National Institutes of Health.

REFERENCES

Baer, R. (2003). Mindfulness training as a clinical intervention: A conceptual and empir-

ical review. Clinical Psychology: Science and Practice, 10(2), 125–​143.
Beck, K. B., Conner, C. M., White, S. W., & Mazefsky, C. A. (2020). Mindfulness “Here
and Now”: Strategies for Helping Adolescents With Autism. Journal of the American
Academy of Child & Adolescent Psychiatry, 59(10), 1125–​1127.
132

132 P sychological T herapies for A dults W ith A utism

Beck, K. B., Conner, C. M., Breitenfeldt, K. E., Northrup, J., White, S. W., & Mazefsky,
C. A. (2020). Assessment and treatment of emotion regulation impairment in au-
tism spectrum disorder across the life span: Current state of the science and future
directions. Child and Adolescent Psychiatric Clinics, 29(3), 527–​542.
Beck, K. B., Greco, C. M., Terhorst, L. A., Skidmore, E. R., Kulzer, J. L., & McCue, M.
P. (2020). Mindfulness-​based stress reduction for adults with autism spectrum dis-
order: Feasibility and estimated effects. Mindfulness, 11, 1286–​1297.
Cachia, R. L., Anderson, A., & Moore, D. W. (2016). Mindfulness in Individuals with
Autism Spectrum Disorder: A Systematic Review and Narrative Analysis. Review
Journal of Autism and Developmental Disorders, 3(2), 165–​178.
Chiesa, A., & Malinowski, P. (2011). Mindfulness-​based approaches: Are they all the
same? Journal of Clinical Psychology, 67(4), 404–​424.
Conner, C. M., Golt, J., Righi, G., Shaffer, R., Siegel, M., & Mazefsky, C. A. (2020).
A Comparative Study of Suicidality and Its Association with Emotion Regulation
Impairment in Large ASD and US Census-​Matched Samples. Journal of Autism and
Developmental Disorders, 50(10), 3545–​3560.
Conner, C. M., & White, S. W. (2018). Brief report: Feasibility and preliminary efficacy
of individual mindfulness therapy for adults with autism spectrum disorder. Journal
of Autism and Developmental Disorders, 48(1), 290–​300.
Conner, C. M., White, S. W., Beck, K. B., Golt, J., Smith, I. C., & Mazefsky, C. A. (2019).
Improving emotion regulation ability in autism: The Emotional Awareness and
Skills Enhancement (EASE) program. Autism, 23(5), 1273–​1287.
Crane, R. S., Brewer, J., Felman, C., Kabat-​Zinn, J., Santorelli, S., Williams, J. M. G.,
Kuyken, W. (2016). What defines mindfulness-​based programs: The warp and the
weft. Psychological Medicine, 47, 990–​999.
Crane, R. S., Kuyken, Q., Williams, M. G., Hastings, R. P., Cooper, L., & Fennell, M.
J. (2012). Competence in teaching mindfulness-​based courses: Concepts, develop-
ment and assessment. Mindfulness, 3, 76–​84.
Gaigg, S. B., Flaxman, P. E., McLaven, G., Shah, R., Bowler, D. M., Meyer, B., Roestorf,
A., Haenschel, C., Rodgers, J., & South, M. (2020). Self-​guided mindfulness and
cognitive behavioural practices reduce anxiety in autistic adults: A pilot 8-​month
waitlist-​controlled trial of widely available online tools. Autism, 24(4), 867–​883.
Gotink, R., Chu, P., Busschback, J., Benson, H., Fricchione, G., & Hunink, M. (2015).
Standardised mindfulness-​based interventions in healthcare: An overview of sys-
tematic reviews and meta-​analyses of RCTs. PLOSONE, 10(4), 1–​17.
Gu, J., Strauss, C., Bond, R., & Cavanagh, K. (2015). How do mindfulness-​based cog-
nitive therapy and mindfulness-​based stress reduction improve mental health and
wellbeing? A systematic review and meta-​analysis of meditation studies. Clinical
Psychology Review, 37, 1–​12.
Gunaratana, H. (2015). Mindfulness in plain English. Wisdom Publications.
Hartley, M., Dorstyn, D., & Due, M. (2019). Mindfulness for children and adults with
autism spectrum disorder and their caregivers: A meta-​analysis. Journal for Autism
and Developmental Disabilities, 49, 4306–​4319.
Hartmann, K., Urbano, M. R., Raffaele, C. T., Kreiser, N. L., Williams, T. V., Qualls, L. R.,
& Elkins, D. E. (2019). Outcomes of an emotion regulation intervention group in
young adults with autism spectrum disorder. Bulletin of the Menninger Clinic, 83(3),
259–​277.
13

Mindfulness-Based Interventions133

Hwang, Y., & Singh, N. N. (2016). Mindfulness. In N. N. Singh (Ed.), Handbook of

evidence-​based practices in intellectual and developmental disabilities (pp. 311–​346).
Springer Nature.
Kabat-​Zinn, J. (2006). Mindfulness-​based interventions in context: Past, present, & fu-
ture. Clinical Psychology Science and Practice, 10(2), 144–​156.
Kabat-​Zinn, J., Lipworth, L., & Burney, R. (1985). The clinician use of mindfulness med-
itation for the self-​regulation of chronic pain. Journal of Behavioral Medicine, 8(2),
163–​189.
Kiep, M., Spek, A. A., & Hoeben, L. (2014). Mindfulness-​based therapy in adults with
an autism spectrum disorder: Do treatment effects last? Mindfulness, 6(3), 637–​644.
McCown, D., Reibel, D., & Micozzi, M. S. (2011). Teaching mindfulness: A practical guide
for clinicians and educators. Springer.
Pagni, B. A., Walsh, M. J., Foldes, E., Sebren, A., Dixon, M. V., Guerithault, H., Braden,
B. B. (2020). The neural correlates of mindfulness-​induced depression reduction
in adults with autism spectrum disorder: A pilot study. Journal of Neuroscience
Research, 98(6), 1150–​1161.
Ruijgrok-​Lupton, P. E., Crane, R. S., & Dorjee, D. (2018). Impact of mindfulness-​based
teacher training on MBSR participant well-​being outcomes and course satisfaction.
Mindfulness, 9(1),117–​128.
Santorelli, S. (2001). Mindfulness-​based stress reduction (MBSR): Standards of practice.
Center for Mindfulness in Medicine, Health Care & Society.
Santorelli, S. F., Meleo-​Meyer, F., Koerbel, L., & Kabat-​Zinn, J. (2017). Mindfulness-​Based
Stress Reduction (MBSR) Authorized Curriculum Guide©. Center of Mindfulness in
Medicine, Health Care, & Society.
Segal, V., Williams, J. M. G., Teasdale, J. D. (2002). Mindfulness-​based cognitive therapy
for depression. Guilford Press.
Sizoo, B. B., & Kuiper, E. (2017). Cognitive behavioural therapy and mindfulness based
stress reduction may be equally effective in reducing anxiety and depression in
adults with autism spectrum disorders. Research in Developmental Disabilities, 64,
47–​55.
Spek, A. A., van Ham, N. C., & van Lieshout, H. (2010). Effectiviteit van Mindfulness
Based Stress Reduction bij volwassenen met een autismespectrumstoornis.
Wetenschappelijk Tijdschrift Autisme, 9(3), 82–​88.
Spek, A. A., van Ham, N. C., Nyklicek, I. (2013). Mindfulness-​ based therapy in
adults with autism spectrum disorder: A randomized controlled trial. Research in
Developmental Disabilities, 34, 246–​253.
White, S. W., Simmons, G. L., Gotham, K. O., Conner, C. M., Smith, I. C., Beck, K. B.,
& Mazefsky, C. A. (2018). Psychosocial treatments targeting anxiety and depres-
sion in adolescents and adults on the autism spectrum: Review of the research and
recommended future directions. Current Psychiatry Reports, 20(82), 1–​10.
134

11

Emotion-​Focused Therapies
ANNA ROBINSON AND CAITLIN M. CONNER ■

KEY CONSIDERATIONS

• Autistic adults often experience emotional difficulties and may have

differences in their abilities to recognize their own emotions, express and
regulate their emotions, and recognize others’ emotions.
• Autistic adults are more likely to have co-​occurring psychiatric
conditions such as anxiety and depression.
• Emotion-​focused therapy, a humanistic therapy approach, has been
adapted to help adults on the autism spectrum who struggle with
emotions and past traumatic experiences.
• Several studies have also targeted emotion regulation impairment in
autism using mindfulness-​based and cognitive behavioral approaches
• Future research in this area should examine which treatment works best
for whom on the spectrum, how or whether to adapt interventions for
those on the autism spectrum who do not have intellectual disability, and
how to make interventions adaptable to those on the autism spectrum
with an intellectual disability.

OVER VIEW OF EMOTION-​F OCUSED THERAPIES

Differences in emotional expression and regulation have been present since

the earliest descriptions of autism (Kanner, 1943). Autistic individuals display
differences in emotional development across the lifespan (see Conner et al., in
press, for review).
To date, research has shown differences or impairments in several domains of
emotion processing in autistic individuals. Studies of autistic adults indicate that
impairments in emotion awareness, including the inability to notice, describe, and
distinguish among one’s own emotions, is present in nearly half of adults sampled
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Emotion-Focused Therapies135

(Berthoz & Hill, 2005). While some research indicates that autistic individuals are
able to recognize others’ emotional expressions, the ability to distinguish more
subtle, complex, and dynamic emotional expressions is thought to be impaired
in at least some autistic adults (Eack et al., 2015; Rigby et al., 2018). Differences
in emotion expression, such as flattened, atypical, exaggerated, and incongruent
expressions, have been reported in studies of autistic individuals (Costa et al.,
2017; Trevisan et al., 2018). Lastly, studies of emotion regulation (ER), the ability
to modify one’s own emotions, in autistic individuals have indicated early and
frequent difficulties, such as overly relying on maladaptive strategies like sup-
pression and avoidance and difficulties managing strong, very reactive emotional
responses (Mazefsky & White, 2014).
Given that differences or difficulties in emotion-​related areas may present in a
sizable number of autistic individuals, it is likely that emotional difficulties may
lead to other downstream adverse effects. For example, ties between emotional
impairments and social abilities are likely, as impairments in the abilities to label,
demonstrate, and respond optimally to emotions can dampen social connections.
For example, facial expressions of autistic adults were found to appear more “un-
natural” when judged by neurotypical peers (Faso et al., 2014). A meta-​analysis of
research in autism found that impaired emotion recognition was associated with
poorer social functioning (Trevisan & Birmingham, 2016). In a study comparing
quantity of social interactions in autistic and non-​autistic adults, impairments
in emotional awareness, but not autistic symptom severity, were associated with
fewer social interactions (Gerber et al., 2019).
Co-​ occurring psychiatric conditions are highly prevalent throughout
the lifespan in autism, with analyses of a multi-​site sample of autistic youth
demonstrating that a majority of autistic 8-​year-​olds have at least one co-​occurring
psychiatric condition (Soke et al., 2018). Adult prevalence rates of anxiety or de-
pressive disorders range widely, from 20%–​80% (Rosen et al., 2018). Impairments
in ER have been shown to be associated with co-​occurring psychopathology and
suicidality (Conner et al., 2020; Mazefsky & White, 2014) as well as use of inpa-
tient psychiatric services, crisis services, and psychotropic medication (Conner
et al., 2021).
Thus, treatment of emotional difficulties is vitally important for autistic adults.
This chapter will focus on interventions that directly target emotional difficulties,
such as emotion-​focused therapy, dialectical behavior therapy (DBT), and cogni-
tive behavior therapy (CBT) for ER. We will close our chapter with a discussion
of future directions.

INTER VENTIONS

Despite evidence that emotional difficulties contribute to social impairments in

autism, there are no widespread interventions available to ameliorate emotion-​fo-
cused issues. Furthermore, extant treatment research regarding emotion aware-
ness, expression, and recognition has largely focused on autistic children and
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136 P sychological T herapies for A dults W ith A utism

adolescents. Most of the research utilizes computer-​based programs for training

recognition and expression of facial emotion expressions (see Berggren et al.,
2018, for review; Wieckowski et al., 2020). One of the few studies that has focused
on autistic adults used a computer program called Mind Reading to teach adults
emotion recognition of complex facial emotion expressions; while results across
several groups of adults indicated increased recognition, generalizability outside
of the computer program was questionable (Golan & Baron-​Cohen, 2006).
Similarly, little research to date has examined interventions directly targeting
ER, and most of this research has occurred with autistic children and adolescents
(see Beck, Conner, et al., 2020, for a review). The emotion awareness and skills
enhancement (EASE) program was developed to improve ER impairment in
autistic adolescents and adults through teaching emotional awareness with
mindfulness-​based techniques. An initial open trial found improvements in ER,
as well as decreases in depression, anxiety, and irritability symptoms (Conner
et al., 2019). However, this trial (n =​20) of EASE did not include adults, and
a larger, randomized controlled trial (RCT) including adults is still underway
(Conner et al., 2019).
Conner and White (2018) adapted mindfulness-​based cognitive therapy into
an individual therapy targeting ER impairment. The six-​session therapy focused
on teaching mindfulness meditation techniques, discussion of ER strategies
considered traditionally “adaptive” and “maladaptive,” and practice of adaptive
ER strategies. Nine young autistic adults (age 18–​25) completed the intervention
and self-​reported improvement in ER strategies as well as decreased negative af-
fect (Conner & White, 2018).
Emotion-​ related outcomes have likewise been recorded in interventions
targeting other areas. The majority of extant psychosocial intervention research
in autism has focused on treatment of co-​occurring anxiety disorders in chil-
dren and adolescents using CBT (Weston et al., 2016). In CBT-​focused research,
studies have typically used programs either developed or adapted specifically
for autistic individuals. The largest RCT of CBT for anxiety treatment in autistic
youth to date compared traditional CBT to a CBT adapted specifically for autism,
and found that a traditional format was effective for some youth on the spec-
trum (Wood et al., 2020). To date, fewer studies have used CBT with adults on
the spectrum. A systematic review of CBT and mindfulness studies involving au-
tistic adults found only six studies and, of those, only two were RCTs comparing
CBT or mindfulness to a waitlist or comparison treatment condition (Spain et al.,
2015). One study compared CBT versus an anxiety management approach for
autistic adults and obsessive compulsive disorder (OCD), with nearly half of the
CBT group considered treatment responders, more than twice than that of the
anxiety management condition (Russell et al., 2013). CBT studies concerning au-
tistic adults have also targeted social anxiety, agoraphobia, posttraumatic stress
disorder (PTSD), depression, self-​harming behaviors, and substance use disorders
(Helverschou et al., 2019; Spain et al., 2015).
More research has investigated mindfulness-​based interventions with autistic
adults, including mindfulness-​based stress reduction (MBSR), a group-​based ap-
proach that increased emotion awareness, life satisfaction, and trait mindfulness
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Emotion-Focused Therapies137

(Beck, Greco, et al., 2020); a study of acceptance and commitment therapy (ACT)
that decreased stress (Pahnke et al., 2019); and a study that investigated the effi-
cacy of online self-​help programs (one CBT and one mindfulness-​focused) for
autistic adults with co-​occurring anxiety (Gaigg et al., 2020). Results suggest that,
for at least some autistic adults, such online programs could be a cost-​effective
and accessible means to treatment when in-​person psychotherapy is unavailable
or not obtainable.
Emotion-​focused therapy (EFT) is a humanistic-​experiential psychotherapy
that combines relational principles from the person-​centered approach (Rogers,
1951) with more directive evocative interventions from Gestalt and other experi-
ential therapies (Greenberg et al., 1993). Within EFT, the therapeutic relationship
is seen as a key curative element that integrates active approaches of psychodrama
(Moreno & Moreno, 1959), process-​guiding methods from Gestalt therapy (Perls
et al., 1951), and experiential therapy, such as Gendlin’s focusing (1981). There is
increasing evidence of the effectiveness of EFT for treating depression (Goldman
et al., 2006), generalized anxiety disorder (Timulak et al., 2017), and social anxiety
disorder (Shahar et al., 2017).
Emotion-​focused therapy for autism spectrum (EFT-​AS; Robinson & Elliott,
2017) is an integrative group psychotherapy approach grounded in humanistic
values and EFT theory and practice, and it also uses video-​assisted interpersonal
process recall (IPR; Kagan, 1984) as a process-​guiding method making experi-
ential and self-​other relational processing more accessible and concrete. EFT is
process-​marker driven, working with an empathic relationship using markers
to guide interventions for different types of problems that arise in session. EFT-​
AS follows a three-​step model consisting of two kinds of alternating sessions: a
group therapy session and a video-​assisted IPR session. The therapist analyses
each therapy session to select three short clips; these edited clips contain the task
markers and are played in the following IPR session. The therapist is guided by IPR
selection principles, for example, looking for moments of interpersonal ruptures
between clients, clients engaged in dialogue of painful experiences, or an absence
of emotion dialogue. In all sessions, the therapist offers empathic attunement
with client emotions, helping clients by focusing their attention inwards on bodily
feelings. Emotion processing is further supported by the therapist guiding clients
through a range of therapeutic tasks in directed awareness and emotion stimu-
lation using imagery and psychodramatic enactments, interpersonal exchanges,
and video IPR.
In EFT, working with primary and secondary emotions are key concepts. The
primary emotion is the first emotion a person feels when they react to a situation,
and these are usually adaptive emotional responses. Secondary emotions come
afterward and often mask or hide the primary emotion (i.e., anger hiding the pri-
mary hurt emotion). In EFT, the therapist works with the secondary emotion to
help the client locate the primary, hidden emotion. This primary emotion is either
adaptive or maladaptive, and the maladaptive emotion is what we call core pain.
The core pain has an unmet need embedded in it (i.e., if I feel fear then I need
to feel safe). In EFT, the therapist empathically follows the client and helps them
reach their core pain, and the unmet need emerges from this state.
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138 P sychological T herapies for A dults W ith A utism

The aim of EFT is to change a maladaptive emotion with an adaptive emotion

following six key principles. The first is developing awareness of emotions—​being
able to access them and be in touch with their internal emotional experiences. This
is followed by the second principle, which is having clients express their emotions,
mostly with enactment tasks, using chair dialogues. The use of imaginary chair
dialogues such as two-​chair dialogue for conflict split, two-​chair dialogue for self-​
interruption, or empty chair dialogue for unfinished business (Elliott et al., 2004),
heightens awareness and evokes more adaptive emotions. The third focuses on ER,
helping clients to regulate their emotions so they do not become too overwhelmed
and can thereby process their emotions. Following this, the fourth principle
involves helping clients to gain insight and understanding of their own emotions
by reflecting upon their emotional experience, where they are engaged in creating
new narratives. In EFT, positive outcomes involve the final two key principles in
which emotion transformation occurs. The first of these is changing emotion with
emotion, with the client replacing one emotion by experiencing a more powerful
emotion. The sixth key principle is the corrective emotional experience, which
involves changing the maladaptive emotion (core painful emotion) with another
more adaptive emotion, but within the interpersonal relationship. In individual
therapy this is with the therapist; as EFT-​AS is a group therapy this can be with the
therapist, but often the therapist facilitates interpersonal opportunities with other
group members. To date, positive preliminary findings for EFT-​AS have been re-
ported (Robinson & Elliott, 2016), as well as a number of case conceptualizations
from clinical data of clients working through specific presenting problems. These
include misempathy (Robinson & Elliott, 2017) leading to compassion for self and
self-​soothing; accessing trauma-​related experiences with healing from evoked af-
fective empathy and compassion responses from other (Robinson, 2018) and re-
lational rupture and repair (Robinson, 2020).

CASE STUDY

The following presents a case example of working with trauma-​related experiences

(for the case conceptualization model, see Robinson, 2018) following an emotional-​
deepening model (Pascual-​Leone & Greenberg, 2007). The case of Martin (with
Carla and Matt), demonstrates working with trauma-​related experiences using
the deepening model as a guide (see Figure 11-​1). Martin, a 39-​year-​old male
diagnosed with Asperger syndrome in adulthood, was unemployed at the time
and living with his mother and brother at their family home. Martin dropped out
of college toward the end of his first year and came to therapy seeking support for
social isolation, depression, and anxiety related to repetitive, intrusive, destructive
thoughts. In the first phase of therapy (see Figure 11-​1, phase 1), clients tend to
start with a global undifferentiated emotion. Frequently, clients are out of touch
with their inner emotions, stating “I don’t feel my emotions.” The therapist’s goal
is to help the client to specify or differentiate what kind of feeling they have, with
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Emotion-Focused Therapies139

Negative Self-Treatment: Triggers: Behavioral Avoidance:

Fragile sense of self: Historic: rejection Restricted thinking and action:
“something wrong about Current: misempathy “I had to leave, I couldn’t go
me” ruptures back”
PHASE 1:
Approaching
emotions &
exploring
Secondary Emotion: Global Distress
Emotional Avoidance: longing distress
Hopelessness, helplessness, despair, self-pity,
undifferentiated loneliness. for social-emotional connection
with fear of rejection: not able to
protect self
Anxiety:
Longing with anticipated fear-based anxiety

Trauma Retelling: Untold distant trauma—emotion activation and experiential deepening

Fear/shame: everyone hurt me/I had to accept it

PHASE 2:
Working
through
Core Pain: Primary painful emotion primary
Sadness/Abandonment maladaptive
emotions

Need:
To have my hurt heard
To be safe

Compassion: Protective Anger:

Self-soothing from Standing up for self to
speaking one’s truth bullies
Compassion responses Standing up for self to
offered by others imagined father
PHASE 3:
Greiving/letting Go: facilitating
You should have protected me emerging
Symbolization/Mentalization: adaptive
It wasn’t my fault emotions
I understand you

Self/interpersonal Agency:
I can assert myself
I can help you

Figure 11-​1 Emotion-​Focused Therapy Case Conceptualization of Trauma-​Related

Experiences
See Robinson, 2018.

tasks that help clients turn their attention inwards, so they can experience these
emotions, label them, and articulate them.
In EFT-​AS, emotional misunderstanding has been identified as an emotion
marker because this often presents in therapy as misempathy ruptures between
group members or dialogue of these repeated occurrences outside of the therapy
sessions, as part of the client’s narrative history. Therefore, misempathy is seen as
a trigger and defined as a lack of synchronized empathic attunement to the other’s
felt sense or expressed feelings (Robinson & Elliott, 2017). Therapists are looking
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140 P sychological T herapies for A dults W ith A utism

for emotion markers to identify and change negative interaction cycles. Martin
talks about how he has experienced misempathy ruptures in different situations:

Martin: I got pulled upstairs by the supervisor I worked with for doing
something wrong, they did say I’d been confrontational and aggressive
when I was trying to be assertive.

These negative interpersonal experiences are often followed by restricted thinking,

such as a stuck cognitive loop, that the person feels powerless to change, resulting
in behavioral avoidance:

Martin: I ended up having to leave; I ended up having to leave there,

I couldn’t go on.

The client engages in negative self-​ treatment dialogue. These negative self-​
judgments manifest as a fragile sense of self, often as a consequence of concrete
experiences of habitual failed interpersonal encounters (Robinson, 2018) and re-
inforce a lack of self-​agency within these exchanges:

Martin: They talk about conversations that I don’t know about and you feel
guilty about not knowing about them. . . . I can’t have conversations.

Feared triggers and the emotional pain they bring are accompanied with a longing
desire to connect, but a lack of understanding of how to socially and emotionally
read typically developing others generates an apprehensive anxiety:

Martin: I went to University to find friends, to get more of a social life, but
it didn’t happen. I was stuck in my room, I couldn’t do anything to get it.

In EFT-​AS, IPR is used as a process guide to support clients in accessing the

emotional pain contained within their stories. Martin entered therapy with a
low level of emotion regulation. He was upregulated, with flat affect and limited
nonverbal emotional expressions, and his discourse possessed limited emotional
experiences. This missing emotional response to self was evident in his narration
of his own stories, but also in IPR reflection to self:

Martin: I look like a statue; I don’t really use gestures or look at people
when I’m talking.

The therapist uses tasks to help the client deepen their emotional experience,
by using edited clips of video for IPR to evoke emotional responses to self and
engaging in chair enactments. The therapist is listening for an emotion compass
or the painful experiences recalled in the client’s story. In EFT, reprocessing tasks
help clients with trauma retelling, through systematic evocative unfolding and
in creating meaning bridges through trauma retelling and emotion connection
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Emotion-Focused Therapies141

to sense making (Paivio & Pascual-​Leone, 2010). Experiences of extreme and

chronic rejection and peer victimization (Maiano et al., 2016) form part of their
unprocessed trauma-​related experiences, which often manifest as a fragile sense
of self (Robinson, 2018).

Martin: I felt that there was something not right about me. Something
wrong. I just didn’t think there was anything to do and that there was no
point in trying anymore, so I became more isolated and stuck in my flat
on my own.

This unfolding moves to a slightly deeper emotion response, typically a sec-

ondary reactive emotion that is an emotion which is a reaction to another
emotion that came before it. This is often the symptom that the client brings
to therapy, whether they are depressed, anxious, or experiencing post-​trauma
difficulties. In the deepening process we work with the primary maladaptive
emotion; the client will often be stuck in these emotions, so the therapist helps
the client work with this. The client often experiences the feeling of helplessness
or a sense of despair:

Martin: I did feel like it was too late like I said, I do feel like it’s too late in
some ways.
Therapist: Too late. . . .
Martin: For recovery. I’ll never be normal. . . . . I’ll never have a relation-
ship, I’ll always be alone.

Toward the middle phase of therapy (see Figure 11-​1, phase 2) the therapist helps
the client work through primary maladaptive emotions to access and give voice to
these trauma experiences:

Martin: I was horrendously upset by bullying when I was a child. . . . Even

teachers called me the names.

The therapist uses IPR as a process guide to evocative unfolding of recalled

trauma, which can lead to tapping into feelings associated with the memory and
to accessing the adaptive emotion that counters feelings of hopelessness, helpless-
ness, and fear. Martin initially connects with his anger at the violation by others
who bullied him:

Martin: I could viciously attack them all. . . . I didn’t. I feel like doing
that now.

In a heightened state of arousal by accessing his distant trauma memories, Martin

initially becomes underregulated, feeling the anger in the here and now. EFT-​AS
unfolds memories to access emotional experiences in order to transform these
with a more adaptive emotion:
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142 P sychological T herapies for A dults W ith A utism

Therapist: There is strength in your voice. It sounds, a strong anger.

Martin: I am angry with all those people who called me the name as if that
was ok, as if I accepted it. I didn’t.

The final phase of therapy is emotional transformation (see Figure 11-​1, phase 3).
The client achieves this through engagement in enactment tasks. One of the most
helpful is empty chair enactments, which can help the client access the adaptive
emotion and express it:

Martin: I feel like going out and doing violence to those people who
harmed me.
Therapist: If you could tell those people who called you those names what
would you say? [Therapist brings up an empty chair] Let’s put them in
that chair. What would you say to them?
Martin: It wasn’t ok. It wasn’t ok to call me that name. That wasn’t
my name.
Therapist: It wasn’t my name. [Points at empty chair.]
[Therapist helps Martin put each person who harmed him in the chair.]

This deepening process continues until the underlying painful memory is

accessed:

Martin: My dad thought it was because of the way I react. I was just able
to express the way I felt at home, and my dad thought that that was how
I reacted, but I didn’t react I was just trying to express how it hurts.

The therapist helps the client to identify what in the primary maladaptive emotion
is their core pain; that is, what hurts the most. This core pain is at the deepest level,
that thing that feels most painful. It is often a sense of feeling “broken,” “aban-
doned,” or “unlovable.” The therapist offers empathy while being alongside the
clients as they experience their core pain. The therapist asks the client, What does
this sense of being “abandoned,” what does this part of you need? When the client
is able to articulate this, such as “to be protected,” they engage in an imagined
chair enactment of speaking one’s truth:

Therapist: If you could speak to your Dad, if he was here sitting in that
chair, what would you like to say to him?
Martin: I’d just ask him why didn’t you stand up for me? . . . [Lowers head.]
Therapist: [Lowers tone of voice and points to empty chair.] Tell him.
Martin: Why did you not defend me when I was getting called all these
names? You sided with all the people who used to call me it.
Therapist: You didn’t defend me. Tell him. . . . [Points to empty chair.]
Martin: Why didn’t you care about the way you made me feel?
Therapist: I felt . . .
Martin: Sad . . . yeah . . . sad.
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Emotion-Focused Therapies143

As the client begins to access the core pain and the unmet needs that they point
to, the therapist will then ask the client “what will meet that unmet need?” In
EFT, the thing that will meet that need is a different emotion. If this is the client
feeling vulnerable, it would be protective anger, that is, anger that protects; or
if feeling a sense of abandonment, it would be compassion, or connecting sad-
ness (sadness that connects). In therapy, the client then bridges from a primary
maladaptive emotion to an adaptive emotion through the unmet need associated
with the core pain. These adaptive emotions from the unmet need are particularly
useful for meeting the unmet need of different core pain, such as protective anger
for trauma, by helping the client access a part of them that protects and supports
the part that is feeling hurt. In EFT-​AS, the aim is to help the client access self-​
compassion to transform the stuck primary maladaptive emotion. Emotion trans-
formation occurs by replacing one emotion by experiencing a more powerful
emotion, which is most effective within an interpersonal relationship. Self-​com-
passion and self-​soothing is often difficult to achieve, but in EFT-​AS, other group
members can offer compassion to soothe:

Carla: I feel as if I want to give Martin a hug. . . . It’s a protective feeling, it’s
a protective feeling that I’ve got. [Pause.] I want to protect.
Therapist: Where are the emotions coming from?
Carla: I want to give Martin a hug. [Carla looks toward Martin, who holds
her gaze; they hold each other’s warm gaze.]

The final stage of task resolution is meaning creation, and this facilitates accept-
ance with self-​agency and marks the ending of therapy. Reduced cognitive (but
not affective) empathy has been reported in autistic adults (Holt et al., 2018).
Therefore, creation of cognitive empathic understanding supports the new
changing narrative, which is best achieved within interpersonal understanding
and involves grieving and letting go:

Therapist: And how do you feel about your Dad just now?
Martin: It’s still sad that he got it wrong. . . . I wasn’t diagnosed then and
that’s why he didn’t understand me.

SUMMARY

While co-​occurring psychiatric conditions are common in autistic adults, research

into treatments is still emerging. Several evidence-​based treatments such as CBT
and DBT for neurotypical populations have shown some efficacy in improving
emotion-​related outcomes for autistic adults (Hartmann et al., 2019; Spain et al.,
2017). Less research has examined approaches that directly target emotional
concerns, such as EFT, emotion recognition training, and therapies to improve
ER impairment. Far more research that recruits larger samples to determine indi-
vidual factors influencing treatment outcomes is needed to better understand and
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144 P sychological T herapies for A dults W ith A utism

recommend effective treatments for autistic adults who present with emotion-​re-
lated concerns.
Effective treatments for autistic adults must also be accessible. While the ev-
idence base suggests that the treatments discussed in this chapter have clinical
benefit for individuals on the autism spectrum, oftentimes general mental health
providers are hesitant to treat autistic individuals (White et al., 2020). Given the
difficulties of locating a mental health professional with autism expertise, it offers
hope that autistic adults could see symptom improvement from a general pro-
vider. However, research that has tracked autistic adults through Medicare records
(U.S. government-​provided healthcare for individuals with disabilities or low-​in-
come individuals) has found that autistic adults are more likely to receive psycho-
tropic medications than therapy for depression or anxiety when compared to their
non-​autistic peers (Maddox et al., 2018). Overall, mental health professionals who
serve neurotypical adults may require access to training materials to serve adults
on the spectrum, or even just the knowledge that their standard treatments for
emotional difficulties may prove effective for autistic adults with little to moderate
adaptation.

REFERENCES

Beck, K. B., Conner, C. M., Breitenfeldt, K. E., Northrup, J. B., White, S. W., & Mazefsky,
C. A. (2020). Assessment and Treatment of Emotion Regulation Impairment in
Autism Spectrum Disorder Across the Lifespan. Child and Adolescent Psychiatric
Clinics of North America, 29(3), 527–​542.
Beck, K. B., Greco, C. M., Terhorst, L. A., Skidmore, E. R., Kulzer, J. L., & McCue, M.
P. (2020). Mindfulness-​based stress reduction for adults with autism spectrum dis-
order: Feasibility and estimated effects. Mindfulness, 11(5), 1286–​1297.
Berggren, S., Fletcher-​Watson, S., Milenkovic, N., Marschik, P. B., Bölte, S., & Jonsson,
U. (2018). Emotion recognition training in autism spectrum disorder: A systematic
review of challenges related to generalizability. Developmental Neurorehabilitation,
21(3), 141–​154.
Berthoz, S., & Hill, E. L. (2005). The validity of using self-​reports to assess emotion reg-
ulation abilities in adults with autism spectrum disorder. European Psychiatry, 20,
291–​298.
Conner, C. M., Golt, J., Righi, G., Shaffer, R., Siegel, M., & Mazefsky, C. A. (2020). A
comparative study of suicidality and its association with emotion regulation im-
pairment in large ASD and US census-​matched samples. Journal of Autism and
Developmental Disorders, 50(10), 3545–​3560.
Conner, C. M., Golt, J., Shaffer, R. C., Righi, G., Siegel, M., & Mazefsky, C. A. (2021).
Emotion dysregulation is substantially elevated in autism compared to the general
population: Impact on psychiatric services. Autism Research, 14, 169–​181.
145

Emotion-Focused Therapies145

Conner, C. M., & White, S. W. (2018). Brief report: Feasibility and preliminary efficacy
of individual mindfulness therapy for adults with autism spectrum disorder. Journal
of Autism and Developmental Disorders, 48(1), 390–​400.
Conner, C. M., White, S. W., Beck, K. B., Golt, J., Smith, I. C., & Mazefsky, C. A. (2019).
Improving emotion regulation ability in autism: The emotional awareness and skills
enhancement (EASE) program. Autism, 23(5), 1273–​1287.
Conner, C. M., Wieckowski, A. T., Day, T. N., & Mazefsky, C. A. (in press). Emotion
development in autism. In A. Samson, E. Walle, & D. Dukes (Eds.), Emotion devel-
opment. Oxford University Press.
Costa, A. P., Steffgen, G., & Samson, A. C. (2017). Expressive incoherence and alexithymia
in autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(6),
1–​14.
Eack, S. M., Mazefsky, C. A., & Minshew, N. J. (2015). Misinterpretation of facial
expressions of emotion in verbal adults with autism spectrum disorder. Autism,
19(3), 308–​315.
Faso, D. J., Sasson, N. J., & Pinkham, A. E. (2014). Evaluating posed and evoked fa-
cial expressions of emotion from adults with autism spectrum disorder. Journal of
Autism and Developmental Disorders, 45(1), 75–​89.
Elliott, R., Watson, J. C., Goldman, R. N., & Greenberg, L. S. (2004). Learning emotion-​
focused therapy: The process-​experiential approach to change. Washington,DC: APA.
Gaigg, S. B., Flaxman, P. E., McLaven, G., Shah, R., Bowler, D. M., Meyer, B., Roestorf,
A., Haenschel, C., Rodgers, J., & South, M. (2020). Self-​guided mindfulness and
cognitive behavioural practices reduce anxiety in autistic adults: A pilot 8-​month
waitlist-​controlled trial of widely available online tools. Autism Advance online
publication. doi:10.1177/​1362361320909184
Gendlin, E. T. (1981). Focusing (2nd ed.). Bantam Books.
Gerber, A. H., Girard, J. M., Scott, S. B., & Lerner, M. D. (2019). Alexithymia—​not
autism—​is associated with frequency of social interactions in adults. Behaviour
Research and Therapy, 123, 1–​11.
Golan, O., & Baron-​Cohen, S. (2006). Systemizing empathy: Teaching adults with
Asperger syndrome or high-​functioning autism to recognize complex emotions
using interactive multimedia. Development and Psychopathology, 18(2), 591–​617.
Goldman, R. N., Greenberg, L. S., & Angus, L. (2006). The effects of adding emotion-​fo-
cused interventions to the client-​centered relationship conditions in the treatment
of depression. Psychotherapy Research, 16, 536–​546.
Greenberg, L., Rice, L., & Elliott, R. (1993). Facilitating emotional change: The moment
by moment process. Guilford.
Hartmann, K., Urbano, M. R., Raffaele, C. T., Kreiser, N. L., Williams, T. V., Qualls, L.
R., & Elkins, D. E. (2019). Outcomes of an emotion regulation intervention group
in young adults with autism spectrum disorder. Bulletin of the Menninger Clinic,
83(3), 259–​277.
Helverschou, S. B., Brunvold, A. R., & Arnevik, E. A. (2019). Treating patients with
co-​occurring autism spectrum disorder and substance use disorder: A clinical ex-
plorative study. Substance Abuse: Research and Treatment, 13. Advance online pub-
lication. doi:10.1177/​1178221819843291
146

146 P sychological T herapies for A dults W ith A utism

Holt, R., Upadhyay, J., Smith, P., Allison, C., Baron-​Cohen, S., & Chakrabarti, B. (2018).
The Cambridge sympathy test: Self-​reported sympathy and distress in autism. PLOS
ONE, 13(7), e0198273.
Kagan, N. (1984). Interpersonal process recall: Basic methods and recent research. In D.
Larson (Ed.), Teaching psychological skills (pp. 229–​244). Brooks Cole.
Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–​250.
Maddox, B. B., Kang-​Yi, C. D., Brodkin, E. S., & Mandell, D. S. (2018). Treatment uti-
lization by adults with autism and co-​occurring anxiety or depression. Research in
Autism Spectrum Disorders, 51, 32–​37.
Maiano, C., Normand, C. L., Salvas, M. C., Moullec, G., & Aime, A. (2016). Prevalence of
school bullying among youth with autism spectrum disorders: A systematic review
and meta-​analysis. Autism Research, 9(6), 601–​615.
Mazefsky, C. A., & White, S. W. (2014). Emotion regulation. Child and Adolescent
Psychiatric Clinics of North America, 23(1), 15–​24.
Moreno, J. L., & Moreno, Z. T. (1959). Foundations of psychotherapy. Beacon House.
Pahnke, J., Hirvikoski, T., Bjureberg, J., Bölte, S., Jokinen, J., Bohman, B., & Lundgren,
T. (2019). Acceptance and commitment therapy for autistic adults: An open pilot
study in a psychiatric outpatient context. Journal of Contextual Behavioral Science,
13, 34–​41.
Paivio, S. C., & Pascual-​ Leone, A. (2010). Emotion-​ focused therapy for complex
trauma: An integrative approach. American Psychiatric Association.
Pascual-​Leone, A., & Greenberg, L. S. (2007). Emotional processing in experiential
therapy: Why “the only way out is through.” Journal of Consulting and Clinical
Psychology, 75, 875–​887.
Perls, F. S., Hefferline, R. E., & Goodman, P. (1951). Gestalt therapy: Excitement and
growth in the human personality. Dell.
Rigby, S. N., Stoesz, B. M., & Jakobson, L. S. (2018). Empathy and face processing in
adults with and without autism spectrum disorder. Autism Research, 11(6), 942–​955.
Robinson, A. (2018). Emotion-​focused therapy for autism spectrum disorder: A case
conceptualization model for trauma-​related experiences. Journal of Contemporary
Psychotherapy, 48, 133–​1433.
Robinson, A. (2020). Enhancing empathy in emotion-​ focused group therapy for
adolescents with autism spectrum disorder: A case conceptualization model for in-
terpersonal rupture and repair. Journal of Contemporary Psychotherapy, 50, 133–​142.
Robinson, A., & Elliott, R. (2016). Brief Report: An Observational Measure of Empathy
for Autism Spectrum: A Preliminary Study of the Development and Reliability
of the Client Emotional Processing Scale. Journal of Autism and Developmental
Disorders, 46, 2240–​2250.
Robinson, A., & Elliott, R. (2017). Emotion-​focused therapy for clients with autistic pro-
cess. Person-​Centered and Experiential Psychotherapies, 16(3), 215–​235.
Rogers, C. (1951). Client-​centered therapy: Its current practice, implications and theory.
Constable.
Rosen, T. E., Mazefsky, C. A., Vasa, R. A., & Lerner, M. D. (2018). Co-​occurring psy-
chiatric conditions in autism spectrum disorder. International Review of Psychiatry,
30(1), 40–​61.
147

Emotion-Focused Therapies147

Russell, A. J., Jassi, A., Fullana, M. A., Mack, H., Johnston, K., Heyman, I., Murphy,
D. G., Mataix-​Cols, D. (2013). Cognitive behavior therapy for comorbid obsessive-​
compulsive disorder in high-​functioning autism spectrum disorders: A randomized
controlled trial. Depression and Anxiety, 30(8), 697–​708.
Shahar, B., Bar-​Kalifa, E., & Alon, E. (2017). Emotion-​focused therapy for social anxiety
disorder. Journal of Consulting and Clinical Psychology, 85(3), 238–​249.
Soke, G. N., Maenner, M. J., Christensen, D., Kurzius-​Spencer, M., & Schieve, L. A.
(2018). Prevalence of co-​occurring medical and behavioral conditions/​symptoms
among 4-​and 8-​year-​old children with autism spectrum disorder in selected areas
of the United States in 2010. Journal of Autism and Developmental Disorders, 48,
2663–​2676.
Spain, D., Blainey, S. H., & Vaillancourt, K. (2017). Group cognitive behaviour therapy
(CBT) for social interaction anxiety in adults with autism spectrum disorders
(ASD). Research in Autism Spectrum Disorders, 41, 20–​30.
Spain, D., Sin, J., Chalder, T., Murphy, D., & Happé, F. (2015). Cognitive behaviour
therapy for adults with autism spectrum disorders and psychiatric co-​morbidity: A
review. Research in Autism Spectrum Disorders, 9, 151–​162.
Timulak, L., McElvaney, J., Keogh, D., Martin, E., Clare, P., Chepukova, E., & Greenberg,
L. (2017). Emotion-​focused therapy for generalized anxiety disorder: An explora-
tory study. Psychotherapy, 54(4), 361–​366.
Trevisan, D. A., & Birmingham, E. (2016). Are emotion recognition abilities related to
everyday social functioning in ASD? A meta-​analysis. Research in Autism Spectrum
Disorders, 32, 24–​42.
Trevisan, D. A., Hoskyn, M., & Birmingham, E. (2018). Facial expression production in
autism: A meta-​analysis. Autism Research, 11(12), 1586–​1601. doi:10.1002/​aur.2037
Weston, L., Hodgekins, J., & Langdon, P. E. (2016). Effectiveness of cognitive behavioural
therapy with people who have autistic spectrum disorders: A systematic review and
meta-​analysis. Clinical Psychology Review, 49, 41–​54.
White, S. W., Conner, C. M., Beck, K. B., & Mazefsky, C. A. (2021). Clinical update: The
implementation of evidence-based emotion regulation treatment for clients with
autism. Evidence-Based Practice in Child and Adolescent Mental Health, 6(1), 1–10.
Wieckowski, A. T., Flynn, L. T., Richey, J. A., Gracanin, D., & White, S. W. (2020).
Measuring change in facial emotion recognition in individuals with autism spec-
trum disorder: A systematic review. Autism, 24(7), 1607–1628.
Wood, J. J., Kendall, P. C., Wood, K. S., Kerns, C. M., Seltzer, M., Small, B. J., Lewin, A.
B., Storch, E. A. (2020). Cognitive behavioral treatments for anxiety in children with
autism spectrum disorder: A randomized clinical trial. JAMA Psychiatry, 77(5),
473–​484.
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12

Dialectical Behavior Therapy

L O R N A TAY L O R , E R M I O N E N E O P H Y T O U ,
A N D K AT E J O H N S T O N ■

KEY CONSIDERATIONS

• Therapeutic telephone/​text contact between sessions may be required

when supporting emotional monitoring.
• The therapeutic relationship provides an opportunity for social learning.
• The development of emotion regulation skills can depend on the skill of
the therapist in modeling and naming emotions as they occur in session
and between session.
• A client’s potentially reduced emotional expression should be considered
by the therapist and considered when exploring wider emotional and
social difficulties.
• It is important not to overlook everyday functional impairments that
may trigger emotional and relational difficulties.

AN OVER VIEW OF DIALECTICAL BEHAVIOR THERAPY

Dialectical behavior therapy (DBT) is a cognitive behavioral approach that was

developed by Marsha Linehan (Linehan, 1993) as a comprehensive treatment to
address emotional regulation (ER) difficulties experienced by chronically suicidal
women with a diagnosis of borderline personality disorder (BPD). The evidence
base for DBT has grown rapidly and it is now recommended as a first-​line treat-
ment for those with a diagnosis of BPD (e.g., National Institute for Health and
Care Excellence guidelines in the UK). A meta-​analysis has shown the approach
to be effective at reducing suicidal and self-​harm behaviors in adults with a di-
agnosis of BPD (Kliem et al., 2010), and DBT has increasingly been applied to
other populations where underlying emotion dysregulation is a key maintaining
factor in difficulties, such as substance misuse (Linehan et al., 1999), attention
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Dialectical Behavior Therapy149

deficit/hyperactivity disorder (ADHD) (Nasri et al., 2020), and eating disorders

(Rosenfeld et al., 2007; Sampl et al., 2010). DBT has also been extended into older
(Lynch et al., 2003) and younger populations, specifically adolescents (Rathus &
Miller, 2002).
The increasing application of DBT to various psychopathologies and
across different settings points to its comprehensive nature and approach,
incorporating cognitive, behavioral and third wave psychological approaches.
While focusing on addressing core ER difficulties and problematic resulting
behaviors, the approach also allows a careful integration of a biosocial formu-
lation. Linehan’s biosocial model posits that difficulties arise following a trans-
action between an individual’s vulnerabilities and environmental influences.
She outlined that individuals with BPD experience heightened emotional sensi-
tivity, difficulties regulating emotional responses, and a slow return to baseline
following emotional arousal. This ER pattern leads to dysfunctional responding
during challenging situations. Difficulties emerge when this occurs in an
invalidating developmental context, characterized by a lack of understanding
of the individual’s emotional experiences. This leads the individual to fail to
develop effective ER. Patterns of oscillation between emotional inhibition and
extreme lability emerge.
Dialectics is a method of philosophical reasoning which states that two op-
posing statements can be true at the same time. The primary dialectic in DBT
consists of simultaneous acceptance of things “as they are” and of the individual’s
need to implement changes to their responding and behaviors to “build a life
worth living” (Linehan, 1993). This acceptance-​change dialectic sets DBT apart
from cognitive behavioral therapy (CBT), which focuses on precipitating change,
which can be considered invalidating to an individual who experiences a high
level of constant emotional distress. In therapy, the dialectic translates to the
balance of focus on increasing emotional awareness, acceptance, and under-
standing while also focusing on behavioral change and careful management
of contingencies. The approach is typically a 12-​month intensive therapy that
includes four “modes”: weekly individual therapy, weekly skills groups, telephone
coaching, and weekly therapist consult.
Individual therapy sessions focus on developing a formulation of presenting
difficulties and a hierarchy of therapeutic goals. There is a focus on the client re-
cording emotions and problematic behaviors between sessions on a “diary card.”
This is then collaboratively reviewed in session to enable prioritization of any
risk behaviors or difficulties that have arisen. Within individual sessions, behav-
ioral chain analysis is then employed to explore risk behaviors. This involves a
moment-​by-​moment break down and understanding of thoughts, actions, and
emotions that occurred prior to and following any incident of risk. While ini-
tially led by the clinician, over time the client learns to complete this task with
increasing independence. As therapy progresses and skills are learned, solution
analyses (a process of identifying appropriate points to introduce appropriate
adaptive skills) are completed as a way of introducing new, adaptive ways of man-
aging difficult situations.
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150 P sychological T herapies for A dults W ith A utism

Skills groups consist of didactic teaching of four skills modules: mindfulness,

emotion regulation, distress tolerance, and interpersonal effectiveness. These
skills are referred to in individual therapy sessions. Mindfulness is considered a
core skill in DBT, often introduced as the first module and subsequently incorpo-
rated into other modules. Research suggests that mindfulness skills are an essen-
tial determinant of treatment success.
DBT uses phone coaching to provide in-​the-​moment support with the goal
of coaching clients to implement DBT skills to effectively cope with difficult
situations that arise in their everyday life. The calls are typically brief and will often
follow a set protocol (e.g., where a client calls and expresses suicidal behavior).
DBT consult is a weekly meeting attended by clinicians delivering the interven-
tion. Clinicians bring dilemmas or difficulties arising in their individual work, in-
cluding their own reactions or emotions to this. The DBT consultation is essential
to help therapists monitor their fidelity to the treatment, develop their skills, and
sustain their motivation to work with high-​risk, challenging clients.

DBT WITH AUTISTIC INDIVIDUALS

Working Therapeutically With Risk

Self-​reported suicidal ideation and attempts are relatively prevalent in autistic

individuals; up to two thirds report experiencing suicidal ideation and one third
report at least one suicide attempt (Hedley & Uljarevic 2018; Segers & Rawana,
2014). Research also highlights increased rates of wider risk behavior across the
lifespan of autistic individuals, including aggression and self-​injurious behavior
(Lacavalier et al., 2006). Despite widely documented risks, at present there is no
evidence-​based treatment available to address risk behavior for this group.

Emotion Regulation as a Treatment Target

The rationale for the utilization of a DBT approach with autistic individuals lies
within the recognition of difficulties with ER and the evident adverse and de-
bilitating impact that this has (Mazefsky et al., 2013). ER is a complex process
involving neurobiology, cognition, behavior, and emotion (Thompson, 2011) that
allows an individual to monitor and modify emotional arousal and reactivity to
engage in adaptive behavior. Unsurprisingly, compared to the general popula-
tion, autistic individuals are four times more likely to have clinically significant
difficulties with ER (England-​Mason, 2020). A growing body of research suggests
that this impairment manifests in a range of behavioral and mental health
problems, including aggression and self-​injury (Charlton et al., 2020; Damiano
et al., 2014; Mazefsky & White, 2014; White et al., 2014).
Although existing psychosocial interventions for autistic individuals
have ­traditionally focused on diagnosis-​specific interventions (e.g., CBT for
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Dialectical Behavior Therapy151

anxiety), there is increasing support for considering ER as a treatment target

(Beck et al., 2020; Cai et al., 2018; England Mason 2020; White et al., 2020;).
Recent mindfulness-​based treatments and CBT approaches that teach effec-
tive ER to autistic children and/​or their parents have demonstrated feasibility
and improvements in ER skills with associated potential reductions in wider
features associated with autism (Conner et al., 2019; Reyes et al., 2019; Thomson
et al., 2015).
White et al. (2020) suggest that remediation of ER problems is an element in
many psychological intervention models and highlight that it is the cornerstone of
several approaches, perhaps most notably DBT (Linehan, 1993; Rathus & Miller,
2014). Hartmann and colleagues (2012) outline a theoretical argument for the
use of DBT given recent models positing underlying emotion dysregulation as a
core feature of autism (Mazefsky et al., 2013), high rates of self-​harm and suicid-
ality, and difficulties with social skills/​relationships. To date, only one study has
used DBT with autistic individuals (Hartmann et al., 2019). The study examined
the effectiveness of a 12-​week ER group intervention for autistic adults. Findings
indicated significant improvements in social communication and interaction, so-
cial awareness, and social cognition. While the findings require replication, the
results are encouraging regarding group approaches to ER in autism and potential
benefits for social interaction.

Considering Co-​Morbidities

DBT has been successfully adapted for people with neurodevelopmental differences
(Ingamells & Morrissey, 2014; McNair et al., 2017) and there is emerging evidence
regarding its use for individuals with ADHD (Nasri et al., 2017) and intellectual
disability (Sakdalan et al., 2010). Although separate conditions, ADHD, autism,
and intellectual disability co-​occur and have impairments in common. Stevens,
Peng, and Barnard-​Brak (2016) reported that ADHD co-​occurred in 59% of au-
tistic individuals and research suggests that almost half of autistic individuals
have diagnosed intellectual disability (Postorino et al., 2016). The high rates of co-​
occurrence and emerging evidence base for DBT in wider neurodevelopmental
difficulties further point to its potential application for autistic people.

Rationale for Aspects of DBT

There are a number of aspects of DBT treatment that are compatible with
adaptations recommended for psychological interventions for autistic individuals
(Cooper et al., 2018; Walters et al., 2016), namely the long-​term nature of the
therapy, focus on mindfulness, behavior management, provision of support to
generalize skills, and the importance of the therapeutic relationships and social
learning opportunities.
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152 P sychological T herapies for A dults W ith A utism

As outlined previously, mindfulness is a key aspect of DBT and is fundamental

to treatment outcome. There is an established evidence base for the feasibility, ac-
ceptability, and effectiveness of mindfulness interventions in autistic individuals,
with positive outcomes including decreased rumination (De Bruin et al., 2015),
depression, and anxiety (Spek et al., 2013).
There is clinical recommendation that therapeutic input for autistic individuals
can be well supported by caregivers and family to maximize generalization to real-​
life experiences (Kerns et al., 2016; White et al., 2020). In addition to between-​
session contact and support from a therapist, there is scope and recommendation
for involvement of those close to the client to consider their response and man-
agement of maladaptive communication, behavior, or risk. This may serve an
additional purpose for autistic individuals and allow others to assist with general-
ization, which is known to be problematic due to the executive functioning (EF)
difficulties associated with autism.
DBT is a highly structured and predictable therapy. It involves very clear rules,
expectations, and structures both within sessions and across the course of therapy
that may be beneficial for autistic individuals due to the preference for predict-
ability and certainty. One of the key aspects of therapeutic contracting in DBT
relates to motivation and engagement. It is notable that many autistic individuals
may have experienced previous difficulties in therapy and may present as hopeless
or frustrated about psychological intervention. DBT allows a focus on contracting
expectations for therapy that can address this potential hopelessness.
White and colleagues (2020) outline the importance of self-​ monitoring,
highlighting this as an area that may require specific consideration when working
with autistic individuals. They emphasize that increasing self-​awareness is a foun-
dational goal and suggest the need for visual tools and support in their utilization.
The DBT diary card provides a structured way of increasing self-​monitoring be-
tween therapy sessions and can be supported by visual aids and therapist contact.

CASE STUDY

Rebecca was a white British 20-​year-​old female referred to mental health services
following a brief psychiatric inpatient admission. Admission followed escalation
of self-​harming behavior and suicidal ideation. She engaged in comprehensive as-
sessment while she remained an inpatient and then intervention continued after
discharge to the community.

Presenting Difficulties

Rebecca presented with a long history of anxiety and aggressive behavior. At the
point of referral, there were concerns regarding an escalation of suicidal idea-
tion and self-​harm. She was engaging in self-​harm via cutting several times per
week and frequently expressing suicidal intent. There was a noted escalation in
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Dialectical Behavior Therapy153

conflict in the home with frequent incidents of aggression from Rebecca toward
her mother. This was placing a strain on the family and it was unclear if it was sus-
tainable for Rebecca to remain in the family home.
Rebecca had received a diagnosis of autism when she was 13 years old. Cognitive
assessment at this time had highlighted IQ within the average range but identified
relative impairments in processing speed and EF.

Assessment and Formulation

Assessment involved clinical interview with Rebecca and her mother and comple-
tion of psychometric measures. Her description of her difficulties indicated that
she met clinical criteria for depression and anxiety.
While Rebecca was reported to have always had “mood swings” and difficulties
with anger, emotional difficulties had become increasingly apparent following
Rebecca’s transition from education. It was evident that the increasing social and
educational demands and a reduction in structure associated with adolescence
presented a significant challenge for Rebecca. She found it difficult to main-
tain employment and had become socially isolated. She had a number of social
contacts while in education but these had ceased following her leaving school.
Her parents had noticed self-​harm since the age of 13 but reported that this had
become increasingly concerning over the 12 months prior to referral. She was
experiencing difficulties with sleep and parents had also noticed a decline in her
personal care.
With regards to biological vulnerability, while Rebecca wasn’t able to accurately
report on her emotional experiences in detail, she reported that she had a low
threshold to becoming angry and felt overwhelmed quickly (high sensitivity),
she would often feel out of control and behave aggressively when overwhelmed
(high reactivity), and she found it difficult to reduce her levels of arousal. She
reported that she found it difficult to manage noisy environments and that she
needed time to “take things in.” She reported self-​harming approximately four
times per week on average. With regards to friendships, Rebecca reported that
other people had told her she was “intense” and that her mood swings placed
strain on relationships. She also found it difficult to understand the intentions
of others in relationships and described finding it difficult to assert herself. Her
descriptions of relationships indicated that she may have been taken advantage
of in relationships, such as lending friends large sums of money that were never
repaid.
Her mother reported that she was increasingly frustrated with Rebecca’s ap-
parent unwillingness to attend work and felt that her difficulties were largely be-
cause of her low motivation and a reliance on her parents to “support her forever.”
She described how she would try to support Rebecca but felt that any attempt to
help was met with frustration and aggression.
Rebecca was very creative and skilled artistically. She was also motivated to
travel. Her family was very protective and motivated to support her in therapy.
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154 P sychological T herapies for A dults W ith A utism

Table 12-​1 Biopsychosocial Formulation of Rebecca’s Difficulties

Biological Psychological Social
Predisposing Genetic Problems in processing Difficulties understanding
vulnerability nonsocial information: emotions and intentions
to autism -​ Cognitive rigidity of others
Sensory -​ Difficulties in Difficulties attending to
sensitivity planning and goal and using social clues
setting (facial expressions,
-​ Difficulties gestures, nonverbal
organizing self information)
-​ Difficulties shifting
attention
-​ Poor time
management
-​ Slow processing
Precipitating Substance use Low mood and anxiety Employment stressors
Loss of key peer contact
via education
Perpetuating Poor sleep Poor emotion regulation Limited social
Substance use abilities understanding and skills
Self-​harm as coping Financial pressure and
mechanism lack of independence due
Poor planning and to difficulties maintaining
organization abilities employment
Protective Broadly average IQ Some previous positive
friendships
Protective family

Rebecca had had peers when attending college and had been able to maintain the
relationships for two years.
The interaction between Rebecca’s emotional profile, wider neurodevelopmental
needs, and her family environment was fitting with a biosocial model of DBT.
A formulation, exploring vulnerabilities, triggers, maintaining factors, and pro-
tective aspects, was used to understand her presentation and needs with consid-
eration of biological, psychological, and social factors (see Table 12-​1).

DBT Goals

Rebecca’s goals for therapy were outlined and discussed within a DBT hierarchy
(see Figure 12-​1). Simplified and accessible language was used at her request. In
discussing her goals, Rebecca found it difficult to think about her future and larger
goals. Over the course of engagement, she worked collaboratively with her ther-
apist to make a “future life” visual board that included things she wanted in her
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Dialectical Behavior Therapy155

Cutting
Things that will hurt me or other people
Thoughts and
planning to
hang myself
Physical aggression

No diary card
Not turning up to sessions/being late Things that get in the way of me
Therapist being patronising reaching my goals
Therapist being vague
Therapist expecting too much

Feel more confident talking to other people and make

friends
Feel happy
Improve my sleep Things that I really want in life

Understand my feelings (my anger)

Keep a job

Figure 12-​1 Hierarchy of Therapy Goals

future, including social activities and hobbies, close friends, travel, happy family
relationships, and a consistent job that utilized her creativity.

Addressing Life-​Threatening Behavior

Diary Cards
The ability to address risk behavior in therapy relies on the successful reporting
of incidents on a diary card. An individualized, simplified diary card was estab-
lished with Rebecca. However, Rebecca did not complete it and often reported
“it was all fine.” On discussion, Rebecca reported that she found the task over-
whelming and required support. Diary cards were then completed with her ther-
apist during brief, scheduled telephone calls. A visual rating scale was developed
and used as a reference during the calls. Rebecca became increasingly able and
motivated to complete the diary card independently during the course of therapy
with increased emotional understanding and reporting.

Chain and Solution Analysis

Rebecca required individual skill coaching in sessions to support the emotional
understanding required to complete a chain analysis. Initial attempts to explore
incidents of aggression and self-​harm via chain analysis led to several missing
links in chains and “don’t know” responding.
Sessions were spent exploring her understanding of different emotions, com-
bining coaching and psychoeducation. Rebecca frequently identified her emo-
tional state as “stressed” and responded well to emotional literacy work focusing
on her awareness of physiological experience and cognitions. It was helpful to
focus on changes in emotional state initially without too much focus on applica-
tion of verbal labels; this allowed her to more readily apply a regulation strategy
156

156 P sychological T herapies for A dults W ith A utism

What happened before? What happened after?

Mom came into my room I cleaned up, took a shower
interrupts me getting ready for work

How did this make

you feel? Behavior
How did this make
cut you feel?
Anxious
In front of the TV:
Overwhelmed In control
same chair, same
show, same
Thoughts
pattern of cuts
I’ll be late now
(“It’s my ritual”)
I can’t go

What did I try before?

Shouted at mom to leave

Figure 12-​2 Example Chain Analysis

to address physiological arousal in the moment. Through individual sessions and

telephone support she was able to broaden her noticing and understanding of
basic emotional states that allowed the completion of simplified chain analysis
and application of more specific skills and solutions.
Rebecca became increasingly skilled at understanding the relationship be-
tween her autistic traits (difficulties understanding emotions of others, sensory
sensitivities, poor organizational skills, low processing speed), anger, and self-​
harm, exploring complex emotions such as guilt and shame following incidents
of aggression and self-​harm. An example simplified chain analysis is shown in
Figure 12-​2.
Exploration of potential solutions to chain analysis led to skills from all skills
domains with additional consideration of Rebecca’s autistic traits. For example,
it was possible to address vulnerability factors by addressing sleep hygiene and
introducing mindfulness tasks to interrupt her anxious rumination in the eve-
ning. Establishing a good sleep routine required additional environmental
supports, including alarms to prompt her to initiate a bed routine and ensure she
woke up on time. Over the course of therapy, it became evident that her organi-
zational and planning difficulties were often prompting her mother to intervene
to provide support when Rebecca was in a heightened emotional state. The prob-
lematic interactions were addressed jointly with Rebecca and her mother (see the
following section on family work), and DBT and additional skills were suggested
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Dialectical Behavior Therapy157

Before During After

Thinking Thinking Feeling

‘If I won’t be on time, I cant go’ “I’m useless” Calm
“I’ll lose my job” In control
Feeling
Anxious Feeling Body
Overwhelmed sad Relaxed
Disappointed
Hopeless
Doing Thinking
Shout at mom Start to regret it, mom will be
Body angry
Tense
Body Feeling
Sweaty, heart racing Doing Embarrassed, ashamed
Cut

What can I try before? What can I try during? What can I try after?
Use STOP skill Use TIPP skills Ride the emotion wave
Problem solve: call work explain Distract Get rid of the blade
what happened, use GIVE and BEST Look at my Pros and Cons of self- Add to my pros and cons; I need to
skills to talk to them harm remember it doesn’t help long-term
Call my therapist Use “cheerleader” statements Write down what happened so we
can do a chain in session

Figure 12-​3 Chain and Solution Analysis

in relation to her difficulties recognizing and understanding emotions in others,

noticing emotions, managing distress, problem solving, and effective communi-
cation. A chain and solution analysis is shown in Figure 12-​3. While many skills
may be suggested to individuals in exploring solutions to crises within typical DBT
therapy, care was taken not to overwhelm Rebecca with strategies. Repetition and
practice were important in her effective acquisition of skills, and her repertoire
of strategies was increased gradually over the course of therapy. Each individual
session was recorded and shared with Rebecca and learning summaries were pro-
vided visually to enable her to revisit session material easily.

Skills Group

Rebecca attended a DBT skills group to support her individualized learning and
skill development. The group did not include others with autism and materials
in the group were not adapted in any way. While providing an opportunity to in-
crease social contact, the skills group also provided a platform for her to challenge
anxieties regarding social acceptability. Anxiety and relationships were identified
as behaviors interfering with quality of life, and, in the absence of risk behaviors,
individual therapy provided an opportunity to explore social difficulties and role
play effective social skills which could then be practiced in group. In addition,
skills group made explicit use of role play and provided a safe environment to
practice skills. Rebecca was offered a number of additional individual skills ses-
sions to support her learning and acquisition of skills. Skills group content and
adapted skills support are outlined in Table 12-​2.
158

Table 12-​2 Summary of Skills Group and Required Additional Skills

Skill Module Group Content Autism Adaptations Delivered in
Individual Sessions
Mindfulness Wise mind Brief mindfulness tasks focused on
“How” skills external experiences
“What” skills Meditation on soles of the feet
practice in session
Emotion Understanding and naming Increased focus on emotional
regulation emotions literacy and understanding
What makes it hard to regulate and naming emotions in self
emotions and others
Emotion myths Emotion recognition visual aid
Model for describing emotions Feelings thermometer
Ways to describe emotions Understanding the triggers to
Check the facts emotions
Opposite action Recognizing emotions in others,
Problem solving learning about facial expressions,
Building positive emotions posture, and gesture
Cope ahead Accumulating positive emotions—​
Taking care of your body increased support and planning
Tackling sleep Sleep hygiene
Distress STOP skills Recognizing physiological
tolerance Pros and cons of managing sensations using in-​session tasks
distress
Change your body chemistry
Distract
Self soothe
Body scan
IMPROVE the moment
Interpersonal Obtaining Noticing rigidity/​inflexibility of
effectiveness objectives: DEAR MAN thought
Keeping a relationship: GIVE Teaching communication
Keeping self-​respect: FAST styles: “The assertiveness
Saying no continuum”
Building relationships Exploring empathy and theory
Mindfulness of others of mind and psychoeducation on
Walking the middle path cognitive and emotional empathy
Explicit role plays and social
tasks set in individual sessions for
practicing in skills groups
In-​vivo feedback on social skills
159

Dialectical Behavior Therapy159

Generalizing Skills
Telephone Coaching
Following a period of time engaging in scheduled therapist-​initiated telephone
support, telephone coaching became increasingly helpful as Rebecca became able
to call her therapist when “stressed out” and to provide information regarding the
antecedents to distress, working with the therapist to identify her emotional state
and relating this back to situation triggers and thoughts. This expanded further
over the course of therapy to focus on appropriate action and management of the
emotion with implementation of skills. Rebecca also benefitted from telephone
support to check in on her self-​care skills and behavioral activation to increase
positive emotional experiences.

Family Involvement
Given the prioritization of aggression on her hierarchy and the role of interactions
with her mother in her self-​harm, Rebecca decided to share session materials with
her mother and worked toward a number of joint sessions. Role plays and asser-
tiveness scripts were developed in individual sessions to prepare for joint sessions
and enabled Rebecca to practice effective communication and prepare ahead
for potentially difficult conversations. Rebecca’s effective communication of her
insights into her risk behavior allowed them to explore alternative ways of man-
aging trigger situations in the home, and these were negotiated using skills from
the interpersonal effectiveness module.
It was evident that Rebecca had difficulties in her interactions with her mother
and it was noted that she often misinterpreted her mother’s communication as
hostile. It was notable that Rebecca’s distress often occurred within the context of
her general social cognition impairment, such as difficulty recognizing, and often
misinterpreting, others’ emotions and frequently misidentifying anxiety in others
as anger; this would lead her to respond with aggression. Explicit conversations
with her mother were beneficial and she was able to work on identifying “clues”
to different emotions and using her “checking the facts” skill when reacting to
the emotional expressions of others. There was also consideration of the impact
on her processing speed and organizational difficulties and how these were often
misinterpreted by the family.

Therapy-​Interfering Behaviors

The transparency around therapy-​interfering behaviors within DBT was benefi-

cial for Rebecca. She was able to consider and raise issues around communica-
tion and understanding within an open dialogue. It was agreed that the therapist
would use concise and concrete language and provide discrete choices where
open-​ended questions might be too difficult. This was planned in order to avoid
“don’t know” responding and frustration for Rebecca in sessions.
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160 P sychological T herapies for A dults W ith A utism

The therapeutic relationship provided a unique opportunity for exploration of

social skills and acceptability for Rebecca. Once rapport was established, the ther-
apist was able to provide feedback on her interactions and explore this in therapy.
For example, initially in therapy Rebecca would text the therapist several times
a day without clear purpose. She would then become frustrated if the therapist
didn’t respond promptly and would become distressed. She would then shut down
communication and not answer the telephone. After a number of weeks, this was
highlighted as a therapy-​interfering behavior that elicited anxiety in the therapist.
Rebecca was able to identify that she also did this to her mother and a friend who
had commented on her “being needy.” She was able to work in therapy to improve
her communication skills using aspects of the interpersonal effectiveness skills
module.

Quality of Life Goals

A number of Rebecca’s “quality of life” goals were addressed within the

broader context of therapy via her acquisition of DBT skills and specific
psychoeducation. An overview of adaptations employed during therapy are
outlined in Table 12-​3.

Table 12-​3 Summary of Adaptations

Mode Adaptation
Individual therapy Shorter, more frequent sessions
Reduced session content/​slower pace; focusing on a
reduced number of key learning points and skills and
repetition of these Use of visual/​written information
Offering choices/​scaffolding responses, for example
when completing chain analyses and limiting reliance on
individual to “generate” responses
Telephone contact to support diary card completion
Use of rapport and feedback in relationship
Use of special interests to increase engagement
Inclusion of psychoeducation around autism
Telephone coaching Graded progression from scheduled, therapist-​initiated
contact to client-​initiated contact during crises in
consideration of problems with self-​management seen in
autistic individuals
Coaching on emotional understanding and increasing
awareness
DBT consult Psychoeducation for clinicians on autism
Inclusion of autism experts within teams or access to
consultation from autism experts
16

Dialectical Behavior Therapy161

CLINICAL REFLECTIONS

A key consideration, that cannot be overlooked, is the impact of neuropsycholog-

ical differences in autism and the contribution of these to difficulties in ER. For ex-
ample, there may be less scope for increasing flexibility of thought and managing “all
or nothing” thinking, but therapy can focus on increasing awareness of inflexibility
through mindfulness of thought. The biosocial model provides a helpful framework
through which to explore, understand, and accept these differences.
The importance of the therapeutic relationship in teaching social skills is well
established. Research has repeatedly attested to the importance of the therapeutic
relationship through which the subtle (and invisible) nuances of social situations
are made visible (e.g., Ramsay et al., 2005). The relationship also provides space for
modeling ER and provides opportunities for individuals to experience emotional
attunement and validation from others. This may have been limited in previous
interpersonal experiences due to impairments in communicating affect and the
lack of nonverbal communication of emotions (through gesture, posturing, and
facial expression), making it difficult for others to notice, acknowledge, or respond
appropriately to distress. The concept of “radical genuineness” (the highest level of
validation) is helpful when thinking about the importance of the relationship when
working with autistic individuals. When the therapist is radically genuine, they re-
spond and interact with the individual as a human and equal; responding to and
naming the “obvious” while not taking themselves too seriously.
Parent/​carer involvement is central to supporting the generalization and sus-
tainability of interventions for autistic individuals. This is in consideration of
the lifelong nature of autism and need for support and/​or “coaching” beyond
12 months of therapy. Parent/​carer involvement in skills groups is routine in child
and adolescent DBT programs (Rathus & Miller, 2002), and in our experience this
can be a helpful adjunct when working with autistic adults, given continued sup-
port offered by parents/​carers through adulthood.
Distress is not always visible, and autistic clients may discuss risk behaviors
in a very “matter of a fact” way, which can lead to them being disbelieved or to
their distress being minimized. There can also be a perceived lack of empathic
responding to others, leading clients to be viewed as “callous” or “unemotional”
and then responded to in this way, which further adds to their existing experiences
of emotional invalidation. This highlights the importance of the DBT consult to
support therapists to explore communications of distress and to reflect on their
own biases and expectations to ensure that they respond effectively.
In conclusion, DBT provides an excellent opportunity to work with autistic
individuals experiencing risk in way that addresses underlying needs while pro-
viding structure, containment, and endless potential for adaptation and creativity.

REFERENCES

Beck, K. B, & Conner, C. M., Breitenfeldt, K., Northrup, J., White, S. W., Mazefsky, C.
A. (2020). Assessment and treatment of emotion regulation impairment in autism
162

162 P sychological T herapies for A dults W ith A utism

spectrum disorder across the life span. Child and Adolescent Psychiatric Clinics of
North America, 29(3), 527–​542.
Cai, R. Y., Richdale, A., Uljarevic, M., Dissanayake, C., & Samson, A. C. (2018). Emotion
regulation in autism spectrum disorder: Where we are and where we need to go.
Autism Research, 11, 962–​978.
Charlton, A. S., Smith, I. C., Mazefsky, C. A., & White, S. W. (2020). The role of emotion
regulation on co-​occurring psychopathology in emerging adults with ASD. Journal
of Autism and Developmental Disorders, 50(7), 2585–​2592.
Conner, C. M., White, S., Beck, K., Golt, J., Smith, I., & Mazefsky, C. (2019). Improving
emotion regulation ability in autism: The emotional awareness and skills enhance-
ment (EASE) program. Autism, 23(5) 1273–​1287.
Cooper, K., Loades, M. E., & Russell, A. (2018). Adapting psychological therapies for
autism. Research in Autism Spectrum Disorders, 45, 43–​50.
De Bruin, E. I., Blom, R., Smit, F. M., van Steensel, F. J., & Bogels, S. M. (2015).
MYmind: Mindfulness training for youngsters with autism spectrum disorders and
their parents. Autism, 19(8), 906–​914.
England-​Mason, G. (2020). Emotion regulation as a transdiagnostic feature in children
with neurodevelopmental disorders. Current Developmental Disorders Reports, 7, 1–​9.
Hartmann, K., Urbano, M. Manser, K., & Okwara, L. (2012). Modified dialectical beha-
vior therapy to improve emotion regulation in autism spectrum disorders. Autism
Spectrum Disorders: New Research (pp. 41–​72).
Hartmann, K., Urbano, M. R., Raffaele, C. T., Kreiser, N. L., Williams, T. V., Qualls, L.
R., & Elkins, D. E. (2019). Outcomes of an emotion regulation intervention group
in young adults with autism spectrum disorder. Bulletin of the Menninger Clinic,
83(3), 259–​277.
Hedley, D., & Uljarevic, M. (2018). Systematic review of suicide in autism spectrum dis-
order: Current trends and implications. Current Developmental Disorders Reports,
5(1), 65–​76.
Ingamells, B., & Morrissey, C. (2014). I can feel good: Skills training for people with intel-
lectual disabilities and problems managing emotions. Pavilion Publishing and Media.
Kerns, C., Roux, A., Connell, J., & Shattuck, P. (2016). Adapting cognitive behavioral
techniques to address anxiety and depression in cognitively able emerging adults on
the autism spectrum. Cognitive and Behavioral Practice, 23(3), 329–​340.
Kliem, S., Kroger, C., & Kosfelder, J. (2010). Dialectical behavior therapy for border-
line personality disorder: A meta-​analysis using mixed-​effects modelling. Journal of
Consulting and Clinical Psychology, 78(6), 936–​951.
Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behaviour problems on care-
giver stress in young people with autism spectrum disorders. Journal of Intellectual
Disabilities Research, 50(3), 172–​183.
Linehan, M. M. (1993). Cognitive-​behavioral treatment of borderline personality disorder.
Guilford Press.
Linehan, M., Schmidt, H., Dimeff, L. A., Craft, J. C., Kanter, J., & Comtois, K. A. (1999).
Dialectical behavior therapy for patients with borderline personality disorder and
drug‐dependence. The American Journal on Addictions, 8(4), 279–​292.
Lynch, T. R., Morse, J. Q., Mendelson, T & Robins, C. J. (2003). Dialectical behaviour
therapy for depressed older adults: A randomized pilot study. American Journal of
Geriatric Psychiatry, 11(1), 33–​45.
163

Dialectical Behavior Therapy163

Mazefsky, C. A., Herrington, J., Siegel, M., Scarpa, A., Maddox, B. B., Scahill, L., & White,
S. W. (2013). The role of emotion regulation in autism spectrum disorder. Journal of
the American Academy of Child and Adolescent Psychiatry, 52(7), 679–​688.
Mazefsky, C. A., & White, S., W. (2014). Emotion regulation: Concepts and practice
in autism spectrum disorder. Child and Adolescent Psychiatric Clinics of North
America, 23(1), 15–​24.
McNair, L., Woodrow, C., & Hare, D. (2017). Dialectical behaviour therapy (DBT) with
people with intellectual disabilities: A systematic review and narrative analysis.
Journal of Applied Research in Intellectual Disabilities, 30(5), 787–​804.
Nasri, B., Castenfors, M., Fredlund, P., Ginsberg, Y., Lindefors, N., & Kaldo, V. (2020).
Group treatment for adults with ADHD based on a novel combination of cogni-
tive and dialectical behaviour interventions: A feasibility study. Journal of Attention
Disorders, 24(6), 904–​917.
Postorino, V., Fatta, L. M., Sanges, V., Giovagnoli, G., De Peppo, L., Vicari, S., & Mazzone,
L. (2016). Intellectual disability in autism spectrum disorder: Investigation of prev-
alence in an Italian sample of children and adolescents. Research in Developmental
Disabilities, 48, 193–​201.
Ramsay, J. R., Brodkin, E. S., Cohen, M. R., Listerud, J., Rostain, A. L., & Ekman, E. (2005).
“Better strangers”: Using the relationship in psychotherapy for adult patients with
Asperger syndrome. Psychotherapy: Theory, Research, Practice, Training, 42(4), 483.
Rathus, J. H., & Miller, A. L. (2002). Dialectical behavior therapy adapted for suicidal
adolescents. Suicide and Life-​Threatening Behaviour, 32(2), 146–​157.
Rathus, J., & Miller, A. (2014). DBT® skills manual for adolescents. Guildford Press.
Reyes, N., Pickard, K., & Reaven, J. (2019). Emotion regulation: A treatment target for
autism spectrum disorder. Bulletin of the Menninger Clinic, 83, 205–​234.
Rosenfeld, B., Galietta, M., Ivanoff, A., Garcia-​Mansilla, A., Martinez, R., Fava, J.,
Fineran, V., & Green, D. (2007). Dialectical behavior therapy for the treatment of
stalking offenders. International Journal of Forensic Mental Health, 6(2), 95–​103.
Sakdalan, J. A., Shaw, J., & Collier, V. (2010). Staying in the here and now: A pilot study
on the use of dialectical behaviour therapy group skills training for forensic clients
with intellectual disability. Journal of Intellectual Disability Research, 54, 568–​572.
Sampl, S., Wakai, S., & Trestman, R. L. (2010). Translating evidence-​based practices
from community to corrections: An example of implementing DBT-​CM. Journal
of Behavior Analysis of Offender & Victim: Treatment & Prevention, 2(2), 114–​123.
Segers, M., & Rawana, J. (2014). What do we know about suicidality in autism spectrum
disorders? A systematic review. Autism Research, 7(4), 507–​521.
Stevens. T, Peng, L., & Barnard-​Brak, L. (2016). The comorbidity of ADHD in children
diagnosed with autism spectrum disorder. Research in Autism Spectrum Disorders,
31, 11–​18.
Spek, A. A., van Ham, N. C., & Nyklíček, I. (2013). Mindfulness-​based therapy in adults
with an autism spectrum disorder: A randomized controlled trial. Research in
Developmental Disabilities, 34(1), 246–​253.
Thompson, R. (2011). Emotion and emotion regulation: Two sides of the developing
coin. Emotion Review, 3, 53–​61.
Walters, S., Loades, M., & Russell, A. (2016). A systematic review of effective modifications
to cognitive behavioural therapy for young people with autism spectrum disorders.
Review Journal of Autism and Developmental Disorders, 3, 137–​153.
164

164 P sychological T herapies for A dults W ith A utism

White, S. W., Conner, C., Beck, K & Mazefsky, C. (2020). Clinical update: The imple-
mentation of evidence-​based emotion regulation treatment for clients with autism.
Evidence-​Based Practice in Child and Adolescent Mental Health, 6(1), 1–​10.
White, S. W., Mazefsky, C. A., Dichter, G. S., Chiu, P. H., Richey, J. A., & Ollendick, T.
H. (2014). Social-​cognitive, physiological, and neural mechanisms underlying emo-
tion regulation impairments: Understanding anxiety in autism spectrum disorder.
International Journal of Developmental Neuroscience, 39, 22–​36.
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13

Schema Therapy
RICHARD VUIJK, HANNIE VAN GENDEREN, HILDE M. GEURTS,
AND ARNOUD ARNTZ ■

KEY CONSIDERATIONS

• There is a strong association between autism spectrum disorder (ASD)

and dysfunctional personality traits (rigidity, low self-​directedness), as
well as between ASD and personality disorder (PD), specifically cluster-​
A (paranoid, schizoid, schizotypal) and cluster-​C (avoidant, dependent,
obsessive-​compulsive) PDs.
• Both ASD and PD are associated with a long-​term pattern of difficulties
in interpersonal functioning. ASD is characterized by a persistent
social disability. PD is characterized by interpersonal difficulties based
on a combination of temperament difficulties and early problematic
relationships with others, attachment pathology, and/​or stressful
situations or events.
• ASD is also associated with positive personality attributes.
• Schema therapy is a well-​suited and effective treatment for people with
chronic mental disorders, including PD, eating disorders, and chronic
depression.
• Schema therapy does not differ markedly for people with ASD,
compared to people without ASD. Taking into account the “dos and
don’ts” and the autism-​specific needs and challenges, as well as factoring
in personality strengths, we believe schema therapy can be a potential
effective treatment for PD in people with ASD.

INTRODUCTION TO SCHEMA THERAPY

Schema therapy (ST) is an innovative, integrative therapeutic approach originally

developed by Jeffrey Young as an extension of traditional cognitive behavioral
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166 P sychological T herapies for A dults W ith A utism

treatments (Young et al., 2003). The schema approach draws from cognitive behav-
ioral therapy (CBT), attachment theory, psychodynamic concepts, and emotion-​
focused therapies. ST is particularly well-​suited and effective for people with
chronic mental disorders, including personality disorders (PDs), eating disorders,
and chronic depression (Bamelis et al., 2014; Renner et al., 2013; Sempérteguia
et al., 2013; Simpson et al., 2010).
A central tenet of ST, drawn from CBT, is that everyone develops schemas
during childhood. A schema is an organized knowledge structure that develops in
early life and manifests in certain behaviors, feelings, and thoughts. Dysfunctional
schemas (such as social alienation, social undesirability, failure, hypercriticalness,
subjugation) develop when some core emotional needs (safety, acceptance, nur-
turance, autonomy, self-​appreciation, self-​expression, and realistic limits) are not
met during formative years. This may be due to shortcomings in the child’s envi-
ronment, or in combination with traumatic events (such as emotional, physical,
or sexual abuse, or being bullied) in interaction with the child’s temperament.
A coping response in combination with a schema results in a so-​called schema
mode, which describes the momentary emotional-​cognitive-​behavioral state of
the person. A schema mode (such as vulnerable child, happy child, compliant
surrender, detached self-​soother, demanding parent) is a set of schemas and
processes, that, in certain situations, determine the thoughts, feelings, and actions
of the person.
ST focuses on changing dysfunctional schemas and maladaptive modes into
more flexible and less extreme schemas/​modes, and developing adequate coping
strategies so that clients develop a more positive image of themselves and others,
as well as a more nuanced view of the world around them. First, the therapist and
client create a case conceptualization based upon the schemas and modes. Next,
in the treatment phase, therapists make use of experiential, cognitive, and behav-
ioral techniques, influencing the client through three channels: feeling (experi-
ential), thinking (cognitive), and doing (behavioral). The experiential techniques
(including imagery rescripting, chairwork dialogue, historical role play) seem to
be the most crucial mechanisms of change, as they appear to change the schemas
and modes on an emotional, as well as cognitive, level. The application of ST
techniques can only be successful once a certain level of trust and attachment
to the therapist is formed. The therapeutic relationship can be described as lim-
ited reparenting, whereby the therapist goes into this relationship as if they are a
parent figure for the client.

AUTISM SPECTRUM DISORDER: PERSONALITY

ATTRIBUTES

An increasing number of studies have examined autism spectrum disorder

(ASD) and comorbid personality pathology. A literature review by Vuijk, Deen,
Sizoo, and Arntz (2018) showed strong indications for personality pathology
in adults with ASD, such that ASD appeared to be significantly associated with
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Schema Therapy167

several temperament and character dimensions, and with major PDs. Some adults
with ASD, for example, were found to have an introverted, rigid, and passive-​
dependent temperament and a risk for deficits in character development with
low self-​directedness and cooperativeness. The majority of adults with ASD do
not have a co-​occurring PD, but prevalence of PD appears to be higher than in
neurotypical adults. The prevalence of meeting criteria for a PD ranges from 48%
to 62% among adults with ASD drawn from clinical samples (Hofvander et al.,
2009; Lugnegård et al., 2012). Results of a meta-​analysis (Vuijk et al., 2018) in-
dicated that the most common PDs were paranoid (24%), schizoid (24%), schiz-
otypal (14%), avoidant (23%), and obsessive-​compulsive (32%). To summarize,
there is a strong association between ASD and dysfunctional personality traits, as
well as between ASD and PD, specifically cluster-​A (paranoid, schizoid, schizo-
typal) and cluster-​C (avoidant, dependent, obsessive-​compulsive) PDs.
Both ASD and PD are associated with a long-​term pattern of difficulties in in-
terpersonal functioning. ASD is characterized by persistent impairments in social
communication and social interaction; in other words, a persistent social disa-
bility or a neurodevelopmental condition with a focus on problems in the social
domain. PD is not characterized by a persistent social disability, but by interper-
sonal difficulties, based on a combination of temperament difficulties and early
problematic relationships with others, attachment pathology, and/​or stressful
situations or events. Each of the DSM-​5 personality disorders describe particular
types of interpersonal difficulties. For example, when having an avoidant PD, con-
tact is disturbed by feelings of inadequacy and hypersensitivity to being negatively
evaluated. In our case study we will meet Christian, diagnosed with ASD (during
childhood) and in adult life, with comorbid avoidant PD features: for him, ASD
means a challenge and difficulty in interpreting verbal and nonverbal communi-
cation, reading other people’s emotions, and expressing his own emotions. In his
childhood his parents and peers did not always know how to deal with his ASD.
In childhood, negative reactions of others were a real burden and a serious cause
of stress for him: he developed low self-​esteem and a pattern of fear of being neg-
atively evaluated. The combination of the negative reactions and his thoughts and
feelings shaped his personality in an avoidant way.
Importantly, research shows that ASD is also associated with positive person-
ality attributes. In a study examining character strengths in adults with ASD,
intellectual open-​mindedness (i.e., thinking things through, examining aspects
from all sides), authenticity, love of learning, creativity, and fairness were found to
be the most frequent signature strengths (Kirchner et al., 2016).

ASD AND SCHEMA THERAPY

People with ASD may have a vulnerability to maladaptive schema development,

partly because of their different ways of processing information about others,
the self, and nonsocial information, often resulting in social difficulties as well as
difficulties with self-​management (Gaus, 2019). For example, children with ASD
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168 P sychological T herapies for A dults W ith A utism

might be at risk of being misunderstood, excluded, and maltreated because of

their ASD and/​or the impact of symptoms. Such early experiences are well-​known
risk factors for deficits in character development and the development of PDs.
Adults with ASD have scored significantly higher on all the early dysfunctional
schemas, apart from self-​sacrifice and approval/​recognition seeking, compared
to typically developing adults (Oshima et al., 2015). Early dysfunctional schemas
have also appeared to account for poorer general mental health in nonclinical
adults with autism spectrum traits (Oshima et al., 2014).
The increased recognition of personality pathology in adults with ASD implies
the need for interventions for personality pathology in this population. To date,
very few studies have examined the acceptability and effectiveness of psychoso-
cial interventions for PD in adults with ASD. A naturalistic multiple case study
(N =​8, aged 20 to 35, four males, four females) indicated that individual ST is ap-
plicable as a treatment for adults with ASD and comorbid psychiatric conditions
narratively showing positive changes in quality of life, symptoms of ASD, cogni-
tive schemas, and schema modes (Oshima et al., 2018). However, a lack of spe-
cific details and limited documentation of methodology and statistical analysis
renders difficult to interpret the positive changes in this study. A specific ST pro-
gram for adults with ASD and comorbid PDs has been developed and investigated
by Vuijk and Arntz (2017). As far as we know, this is the first study investigating
ST in adults with ASD and comorbid PD(s). Results of this study are promising,
showing a significant decrease of dysfunctional core beliefs, PD traits, psycho-
pathological symptoms, an increase of the functional schema mode of happy
child and an improvement in social responsiveness. These results are expected to
be published in 2021.
For several reasons, ST might be a useful therapy for adults with ASD and co-
morbid PD. First, there is increasing empirical support for this therapy as a valu-
able treatment for PDs, as described in the beginning of this chapter. Second, the
therapeutic relationship is active, consistent, supportive, and directive with re-
gard to both content and process, which we consider helpful for people with ASD
who are more often characterized by low self-​directedness as compared to the
general population. Third, ST is a structured and focused psychotherapy, suitable
for people with ASD, who often seem to benefit from this way of working. Thus,
the approach common in ST (i.e., step by step, focused on a theme, structured
by explanation and psychoeducation, and goal-​directed) is likely to be of use for
people with ASD. An ST modified for autism spectrum conditions (ST-​MASC)
was developed by Bulluss (2019). This model provides a framework and an ex-
tension of the regular ST elements in which autism-​driven coping responses and
autism-​specific needs are incorporated and conceptualized. The model provides
illustrative examples of how some people with ASD cope with their core autistic
features living in a neurotypical world, using ST terms originally developed to
describe how people can dysfunctionally cope with maladaptive schema activa-
tion: by surrendering, overcompensating, or avoiding. This can be understood in
terms of eye contact, for example: (a) the coping response of surrendering for the
tendency of limited eye contact is, for instance, staring at the floor or past people;
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Schema Therapy169

(b) the coping response of overcompensating is focusing too much on making

eye contact or staring at times; and (c) an avoidant coping response is avoiding
situations involving face to face interaction, resulting in isolation. Autism-​specific
needs are, for instance, the freedom to focus on interests and a stable and reliable
base for routine, predictability, and sameness.

SCHEMA THERAPY FOR PEOPLE WITH

ASD: CLINICAL CONSIDERATIONS

When starting ST, there are some “dos and don’ts” for a therapist treating PD in
people with ASD:

• As a therapist, first take care to set clear expectations about the role
of the therapist and the client, setting a realistic pace, using language
effectively, validating the client’s experience and providing constructive
feedback (Gaus, 2019).
• At the beginning of every ST session review psychoeducation of the ST
concepts and the specific interventions in order to set clear expectations
for clients with ASD. After an intervention, it is helpful to explain or
discuss in detail what has been done and what it means for the client’s
here-​and-​now situation.
• When cognitive restructuring dysfunctional core beliefs or schema
modes, post-​its (on the wall or on the chair when doing chair dialogues)
can make beliefs or modes more visible and concrete in the here-​and-​
now for clients with ASD.
• People with ASD often say they have never had the opportunity to
explore difficult and challenging personal situations and getting
constructive feedback on their thoughts and feelings. A man with
ASD, avoidant PD, and traumatic memories caused by being bullied
for 10 years in his childhood by other children was treated with ST: his
reaction after imagery rescripting sessions was that the trauma had been
solved because he had verbalized the trauma in therapy. For him, the
trauma was easier to deal with in his daily life.
• For people with ASD, experiential interventions can be a challenge. For
example, a woman with ASD and obsessive-​compulsive PD could not
imagine herself as a child. The therapist solved this as follows: he let
her imagine a general family situation at a dinner table with a father, a
mother, and a little child. After the intervention she discovered that in
the imagery rescripting she had brought up her own family situation and
she was the little child. Explaining, translating, and discussing afterwards
can lead to expression of new functional beliefs about one’s self.

Another example is a man with ASD and schizoid PD who said when starting
imagery rescripting, “I do not feel, but I think. I have a clear and detailed picture
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170 P sychological T herapies for A dults W ith A utism

how it used to be when I was a child: I do have no feelings, but only thoughts
about it.” The therapist can validate the client’s attempt to imagine: he did it in a
cognitive way. He finally expressed new functional core beliefs (of the past) and
could change his actual situation by improved cognitive mentalizing. ST does not
differ substantially for people with ASD compared to people with other mental
disorders.

The psychotherapist needs to be fluent in “Aspergerese”; in other words, to

recognize that autism is a different way of thinking—​almost a different cul-
ture—​and be able to translate the concepts and components of the therapy to
someone with this different way of thinking. (Gaus, 2019, p. ix)

Taking into account the “dos and don’ts,” the autism-​specific needs and challenges,
as well factoring in personality strengths, we believe ST can be a potential effective
treatment for PD in people with ASD.

CASE STUDY: CHRISTIAN

Demographic Information
Living Situation
Christian is a 52-​year-​old Dutch man. He lives alone, has no partner and no chil-
dren. He worked for 23 years as a high school teacher in mathematics. Last year,
he was dismissed: he was unable to deal with the major changes in the Dutch
system for high school education. Currently, he works as a volunteer in a group
home for elderly people one day a week, serving coffee and tea.
Christian is a member of a Dutch network for, and led by, adults with ASD,
visiting its activities once a month. Further, he spends a lot of time home alone.

History
Christian is an only child. His father worked as a teacher in Latin language at
high school. His mother was a nurse in a children’s hospital. After high school
Christian obtained his master’s degree in mathematics at university.
During childhood, there was a lot of order and discipline at home. He experi-
enced challenges in understanding others and playing with other children. His
parents did not encourage him to join other children, so he seldom dared to par-
ticipate: as a child, he felt afraid of his peers’ negative reactions toward him, which
he considered were due to him not knowing how to interact with them. He had
a strong desire for interaction, but did not feel that he possessed the knowledge
or skills to do this adeptly. In his childhood, he was a member of the scout move-
ment. When he participated in scouting activities, he was often a loner in the
group and rarely involved in activities or plays. These experiences contributed
to him feeling unlikable and unwanted, and he developed core beliefs relating to
being different, not good enough, and bound to be alone. He developed a pattern
17

Schema Therapy171

of low self-​esteem and avoidance of interpersonal contact, due to fear of disap-

proval and rejection.

Presenting Problems

After being dismissed from his teaching post, Christian visited his general prac-
titioner (family doctor), reporting depressed feelings and social anxiety. He
was referred to a center specializing in providing diagnostic assessments and
interventions for adults with ASD.
His key presenting difficulties were low self-​esteem, a substantial need for order
and interpersonal control, fear of negative evaluation, and a depressed mood. In
addition, his ASD-​specific challenges related to trying to understand what others
mean: he often needed extra time to process what he hears, sees and feels when
having contact with others.
In his manner, Christian presented as very kind. He regularly sought clarifica-
tion regarding the actual meaning of remarks made by the therapist. He also asked
for a clear and structured way of communicating and required time to provide
what he felt was the right answer.

Assessment and Diagnosis

Mental disorders were assessed at intake in a structured, organized, ASD-​

friendly way. After the assessment, his ASD was confirmed and Christian
was additionally diagnosed with depressive disorder, social anxiety disorder,
and avoidant PD features. Pharmacological treatment, CBT, and ST were
indicated.

Individualized Treatment Plan

Goals
First, depressive disorder and social anxiety disorder were treated with
antidepressants and CBT focusing on scheduling enjoyable activities, physical ex-
ercise, relaxation skills, in-​vivo exposure, and cognitive interventions. After a pe-
riod of 4 months of treatment, ST was introduced to enhance Christian’s ability to
challenge dysfunctional core beliefs (schemas), coping styles, and schema modes;
to increase functional coping styles and schema modes; and to help meet basic
emotional needs.
Christian hoped to increase his competence and confidence in social situations,
thereby feeling less anxiety and stress in these situations. He wanted to express
new beliefs about himself, such as “I am capable and competent” and “I am good
enough to be loved by others.” He also wanted emotional memories to feel less
intense.
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172 P sychological T herapies for A dults W ith A utism

ST for Christian consisted of four phases: (a) five sessions exploring current
and past functioning, psychological symptoms, dysfunctional core beliefs, and
schema modes; (b) 15 weekly sessions of cognitive-​behavioral interventions;
(c) 15 weekly sessions of experiential interventions; and (d) 10 monthly follow-​up
booster sessions.

Experiential Interventions

Imagery rescripting and chairwork dialogues are powerful experiential techniques.

Imagery rescripting uses the power of imagination and visualization to identify
and change meaningful and traumatic orders in the past, resulting in transfor-
mation in the present. Chairwork dialogues give a chair to the schema modes in
the individual so that they can enact or re-​enact scenes from the past, the pre-
sent, or the future. To make these interventions more accessible for people with
ASD, like Christian, the therapist takes into account the “dos and don’ts” and the
autism-​specific needs and challenges mentioned earlier in this chapter. Here, we
exemplify two experiential interventions by outlining one of Christian’s imagery
rescripting sessions and chairwork dialogue sessions, helping him to bring about
actual behavioral change and less intense emotions and memories. Christian
described a recent situation in which he felt completely ignored by his colleague
volunteers at the elderly home. At team meetings, he never felt able to say what he
wanted to say, at the right time, as conversations moved on too quickly for him.

Imagery Rescripting

Therapist (T): Christian, can you close your eyes and imagine the meeting
from last week?
Patient (P): Yes, I am sitting in the meeting room, we are having a meeting
with all 10 of the volunteers. Everyone is talking and mentioning things
they want to say. Everyone except me.
T: And what do you feel?
P: I feel frustrated.
T: Stay with that frustration for a moment. Can you feel it right now?
P: Yes, I feel it in my shoulders.
T: I want you to concentrate on that feeling. The situation with your
colleagues. Let it go. Go back to your childhood and see if a situation
comes in mind in which you are also frustrated as a little child.

[Christian is thinking.]

T: And do you have an image?

P: I am at scouting, and again, I am standing on the sidelines, I am not
participating in building a tent and nobody asks me to join in. Even the
leaders do not pay attention to me. I want to join, but I do not know how.
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Schema Therapy173

T: Is it okay, if I enter the image and talk to the leaders to support you?
P: Yes, that’s okay.
T: [To the leaders] I would like you to know that little Christian is standing
all alone and he wants to join. Can you please involve him in building
the tent?
[To Christian] Is this okay for you, Christian?
P: Well, I am not convinced the leaders will listen to you.
T: Then, I will repeat it again and in a louder voice. [Therapist repeats the
message to the leaders with a louder voice.]
P: Ah, that feels better. I can see that one of the leaders is coming up to me
and asks me to join building the tent.
T: Okay, Christian, take a minute to enjoy the event. When you are okay
with it, you may open your eyes and return to the therapy room. How do
you feel?
P: This was for me the first time that someone [the therapist who came in
the imagery exercise] was giving me support. It feels very good.
T: How can this exercise help you when being together with your
colleagues?
P: [Christian is thinking.]
Well I think, I have to speak the manager before the meeting and ask her
to give me some time to say something during the meeting.
T: That sounds good.
P: Yes, but I am not sure how I can ask her, how I have to do this.
T: Let us give it a try: we can practice this in a role play.

Chairwork Dialogue
Christian was now confronted with two scenarios: “Do I still say nothing at team
meetings or do I say what I want to say?” He felt very nervous thinking about this
dilemma, having a voice in his mind telling him he would not succeed. The ther-
apist invited him to a three-​chair dialogue to give voice to what he was currently
feeling and experiencing. In one chair he gave voice to his vulnerable child mode
(“I feel ashamed of myself when starting conversation in a group”), in the second
chair he gave voice to his demanding parent mode (“You will not succeed”), and
in the third chair he gave voice to his healthy adult mode (“I know you find this
scary, because you are not used to saying what you want to say at team meetings,
but I know you will succeed. It is ok if you don’t speak in perfect sentences. It is
much more important that you speak up than that you strive for perfection, be-
cause then you are much more likely to say nothing”).
The therapist guided him through the dialogue by asking him to take place
vice-​versa in the chairs, especially repeating and strengthening the functional
words and thoughts that came up in Christian’s mind. Christian switched sev-
eral times from chairs, having a dialogue between his shame and social anxiety
(vulnerable child mode), his highest standards and self-​criticism (demanding
parent mode), and his growing assertiveness and self-​confidence (healthy adult
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174 P sychological T herapies for A dults W ith A utism

mode), in the end resulting in less tense feelings and more realistic and confident
thoughts about himself regarding the team meetings.

Evaluation of Treatment

At follow-​up Christian reported that he found ST a long and intensive treatment.

During the therapy, he often wondered if all the interventions and the talking
could glean a positive outcome. ST was confronting, yet in the end, he realized
that it facilitated new functional core beliefs about himself (such as “I am dif-
ferent, but I am good enough the way I am”; “I am confident enough in saying
what I want to say”), better self-​esteem, less anxious feelings and thoughts, and
more skills to manage social interaction.

CONCLUSION

We believe ST might be a potential treatment for PD in people with ASD, when

also taking into account the autism-​specific needs and challenges and making
use of the personality strengths. Randomized effectiveness studies are needed.
Promising results of a first study examining ST in people with ASD and comorbid
PD (Vuijk & Arntz, 2017) are expected in the near future.

REFERENCES

American Psychiatric Association (APA) (2013). Diagnostic and statistical manual of

mental disorders (5th ed.). Arlington, VA: American Psychiatric Association.
Bamelis, L. L. M., Evers, M. A. A., Spinhoven, P., & Arntz, A. (2014). Results of a
multicentered randomized controlled trial on the clinical effectiveness of schema
therapy for personality disorders. American Journal of Psychiatry, 171(3), 305–​322.
Bulluss, E. K. (2019). Modified schema therapy as a needs based treatment for com-
plex comorbidities in adults with autism spectrum conditions. Australian Clinical
Psychologist, 1, 1–​7.
Gaus, V. L. (2019). Cognitive-​behavioral therapy for adults with autism spectrum disorder
(2nd ed.). Guilford Press.
Hofvander, B., Delorme, R., Chaste, P., Nydén, A., Wentz, E., Ståhlberg, O., Herbrecht,
E., Stopin, A., Anckarsäter, H., Gillberg, C., Råstam, M., & Leboyer, M. (2009).
Psychiatric and psychosocial problems in adults with normal-​intelligence autism
spectrum disorders. BMC Psychiatry, 9, 35.
Kirchner, J., Ruch, W., & Dziobek, I. (2016). Brief report: Character strengths in adults
with autism spectrum disorder without intellectual impairment. Journal of Autism
and Developmental Disorders, 46(10), 3330–​3337.
175

Schema Therapy175

Lugnegård, T., Hallerbäck, M. U., & Gillberg, C. (2012). Personality disorders and au-
tism spectrum disorders: What are the connections? Comprehensive Psychiatry,
53(4), 333–​340.
Oshima, F., Iwasa, K., Nishinaka, H., & Shimizu, E. (2015). Early maladaptive schemas
and autism spectrum disorder in adults. Journal of Evidence-​Based Psychotherapies,
15(2), 191–​205.
Oshima., F., Nishinaka, H., Iwasa, K., Ito, E., & Shimizu, E. (2014). Autism spectrum
traits in adults affect mental health status via early maladaptive schemas. Psychology
Research, 4(5), 336–​344.
Oshima, F., Shaw, I., Ohtani, T., Iwasa, K., Nishinaka, H., Nakagawa, A., & Shimizu, E.
(2018). Individual schema therapy for high-​functioning autism spectrum disorder
with comorbid psychiatric conditions in young adults: Results of a naturalistic mul-
tiple case study. Journal of Brain Science, 48, 43–​69.
Renner, F., Arntz, A., Leeuw, I., & Huibers, M. (2013). Treatment for chronic depression
using schema therapy. Clinical Psychology Science and Practice, 20(2), 166–​180.
Sempertegui, G. A., Karreman, A., Arntz, A., & Bekker, M. H. (2013). Schema therapy
for borderline personality disorder: A comprehensive review of its empirical
foundations, effectiveness and implementation possibilities. Clinical Psychology
Review, 33(3), 426–​447.
Simpson, S. G., Morrow, E., van Vreeswijk, M., & Reid, C. (2010). Group schema therapy
for eating disorders: A pilot study. Frontiers in Psychology, 1, 182.
Vuijk, R., & Arntz, A. (2017). Schema therapy as treatment for adults with autism spec-
trum disorder and comorbid personality disorder: Protocol of a multiple-​base-
line case series study testing cognitive-​behavioral and experiential interventions.
Contemporary Clinical Trials Communications, 5(2), 80–​85.
Vuijk, R., Deen, M., Sizoo, B., & Arntz, A. (2018). Temperament, character and per-
sonality disorders in adults with autism spectrum disorder: A systematic literature
review and meta-​analysis. Review Journal of Autism and Developmental Disorders,
5, 176–​197.
Young, J. E., Klosko, J. S., & Weishaar, M. E. (2003). Schema therapy: A practitioner’s
guide. Guilford Press.
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14

Compassion-​Focused Therapy
J A M E S A C L A N D A N D D E B B I E S PA I N ■

KEY CONSIDERATIONS

• Psychosocial and systemic risk factors increase vulnerability for high

levels of self-​criticism and shame.
• Shame, self-​criticism, and impaired capacity to self-​soothe and regulate
emotions can mediate the effectiveness of traditional talking therapies.
• Compassion-​focused therapy (CFT) encourages people to move from
a position of inward criticism and judgment toward a stance of self-​
kindness, compassion, warmth, empathy, and care.
• CFT interventions include psychoeducation; formulation; development
of self-​soothing strategies and emotion recognition and regulation
skills; imagery and belief work; deliberate compassionate exercises; and
mindfulness practice.

OVER VIEW

Compassion-​focused therapy (CFT) is a third-​wave psychological therapy, in-

formed by evolutionary and social psychology, neuropsychology and attach-
ment theories, cognitive behavior therapy (CBT), and Buddhist and mindfulness
principles. CFT developed as an approach for people struggling to form secure
attachments with others and presenting with shame-​based difficulties and high
levels of self-​criticism, who did not respond favorably to more traditional talking
therapies (Gilbert, 2009a). CFT principally aims to (a) support people to develop
the capacity to self-​soothe more effectively, and have empathy and acceptance for
their “suffering”; (b) help people to move from a position of self-​criticism, self-​
condemnation, and blame toward a stance of kindness, compassion, warmth, and
care toward themselves; and (c) be more compassionate toward others and feel
able to accept others’ compassion toward them (Gilbert, 2009a, 2009b). People are
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Compassion-Focused Therapy177

encouraged to develop the strength to move toward suffering and the wisdom to
alleviate this by learning what might help, in the moment and longer-​term. CFT
also involves acquiring mindfulness skills to jump out of any loops that can main-
tain suffering, and to build up compassionate qualities.
There are three main elements to self-​compassion: (a) self-​kindness versus
self-​judgment (adopting a curious approach to oneself, rather than self-​judgment
and criticism); (b) common humanity versus isolation (the view that we share
common experiences and are all part of humanity, rather than being alone); and
(c) mindfulness versus overidentification (the idea that balanced thoughts are
better than overidentifying with specific thoughts).
CFT seeks to “depersonalise and de-​shame by helping the client to understand
how their brain regulates emotion” (Beaumont & Hollins-​Martin, 2015, p. 22).
This is informed by a theoretical evolutionary model categorizing emotions
into threat, drive, and soothing systems (see Figure 14-​1). The threat system is
designed to react quickly to internal and external triggers and gives rise to neg-
ative emotions (e.g., anger, anxiety, disgust). The drive system encourages a
search for “important rewards and resources” (e.g., food, alliances); when acti-
vated, people experience excitement and pleasure. The soothing system kicks in
at times of safety and rest, evident through contentment and peacefulness, and it
facilitates affiliative relationships (Gilbert & Choden, 2014). The three systems are
deemed both necessary and important for helping humans thrive; that is, we need
to be primed to respond rapidly to danger, to feel perpetually motivated toward
meeting our basic needs, and to have downtime when we can rest, recuperate and
develop relationships with others who might help us mitigate threat and discover
opportunities. Yet for some people, these systems are unbalanced: specifically, the
threat system is overactive and the soothing system is underactive (e.g., due to

Drive, excited, vitality Content, safe, connected

Incentive/ Nonwanting/
resource-focused affiliation-focused

Wanting,
pursuing, achieving, Safeness-kindness
consuming
Activating Soothing

Threat-focused

Protection and
safety seeking

Activating/inhibiting

Anger, anxiety, disgust

Figure 14-​1 Gilbert, The Compassionate Mind (2009), reprinted with permission from
Little Brown Book Group
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178 P sychological T herapies for A dults W ith A utism

adversity or trauma; Gilbert, 2009b). CFT helps people to understand how and
why this might be and to redress this imbalance. Partly, this is informed by the
notion of having a “tricky brain,” with “old” and “new” components: the old brain
is responsible for basic drives and the new brain processes more complex infor-
mation (Gilbert, 2014).

SELF-​C OMPASSION OF PEOPLE WITH AUTISM

Scant research has examined compassion in people with autism. One study by
Howes and colleagues (2020) investigated self-​compassion and autistic traits in
176 neurotypical university students (60% male, mean age 24.5 years, range 18–​
71 years old). Participants completed demographic questions (e.g., about sex, age);
the autism quotient (AQ; Baron-​Cohen et al., 2001), which is a 50-​item self-​report
measure of autism traits; and the self-​compassion scale (SCS; Neff 2003), which is
a 26-​item self-​report questionnaire of positive and negative facets of compassion.
Positive facets of compassion were significantly negatively correlated with the AQ,
and negative aspects of compassion were significantly positively correlated with
the AQ. In a related study, Galvin and colleagues (2020) asked 164 students (42%
male, mean age 24.2 years, range 18–​51 years old) to complete the AQ, SCS, and
hospital anxiety and depression scale (Zigmond & Snaith, 1983). Self-​compassion
was found to mediate relationships between autism, anxiety, and depression, pro-
viding support for the hypothesis that self-​compassion may be associated with, or
predict, mental health symptoms (MacBeth & Gumley, 2012).

RISK FACTORS FOR SELF-​C RITICISM AND SHAME-​

BASED DIFFICULTIES IN PEOPLE WITH AUTISM

Several factors might increase the susceptibility of people with autism to devel-
oping self-​criticism and shame. First, many people with autism experience peer
victimization, rejection, and ostracism (Maiano et al., 2016; Weiss & Fardella,
2018). Victimization negatively affects people’s sense of safety and security, so-
cially and relationally. Additionally, people with autism may have few positive
relationships (Petrina et al., 2014), thereby impacting their capacity to develop
social confidence. Second, people with autism tend to do less well educationally
and occupationally, relative to their abilities (Kirby et al., 2016). Over time, this
may reinforce negative self-​beliefs (e.g., about performance). Third, people with
autism experience disproportionately high rates of internalizing disorders, in-
cluding anxiety disorders and depression (Lai et al., 2019), and these are com-
monly associated with poorer self-​esteem in neurotypical samples (Sowislo &
Orth, 2013). Prevalence rates of posttraumatic stress disorder (PTSD) are also
high (Rumball, 2019). Shame—​including perceptions that others view a person
as inferior, faulty, or inadequate, and comparable self-​ beliefs—​
are common
experiences for people with PTSD (Lee et al., 2001). Fourth, failure to attain an
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Compassion-Focused Therapy179

autism diagnosis until later life can contribute to a sense of “not knowing” (e.g.,
why some situations/​interactions are difficult), giving rise to core beliefs about
being different or inferior (Spain et al., 2020), and increasing vulnerability to
shame-​based difficulties. Fifth, evidence suggests that some people with autism
deliberately mask autistic traits (Hull et al. 2017). Indirectly, this may increase
concerns about being different and not fitting in, exacerbating self-​focused atten-
tion and self-​condemnation. Lastly, people with autism commonly fall between
gaps in health services (Murphy et al., 2018) and frequently report being told they
are “too complex” for generic health services. This plausibly incurs feelings of
rejection, further augmenting concerns about being different or defective. Taken
together, psychosocial and systemic factors affecting people with autism across
the lifespan potentially precipitate and perpetuate negative core beliefs and high
levels of self-​criticism and shame.

CFT IN PRACTICE

CFT typically includes formulation, functional analysis, exploring the narrative

of past experiences to deepen a sense of compassion (and its flow from ourselves
to and from others, and to ourselves), imagery exercises, acting approaches,
and belief work. Some techniques are shared with CBT, schema therapy and
mindfulness-​based approaches. As CFT is not protocol-​driven, this allows for an
individualized approach, transdiagnostically. See Table 14-​1 for common CFT
strategies.

OUTCOME MEASURES

Compassion-​focused outcomes can be measured via self-​report questionnaires,

such as the fear of compassion scale (FOCS; Gilbert et al., 2011), which has three
subscales assessing fears of compassion for self, from others, and for others. If
someone experiences difficulty answering questions about others’ thoughts (as
can be the case for people with autism), the social comparison scale (SCS; Allan
& Gilbert, 1995) has been a useful guide to assessing perceived social standing
without having to infer too much from others. Clinically, this has often indicated
improvement in feeling equal and included with others, while allowing a person
to be different.

THE EVIDENCE BASE FOR COMPASSION-​

FOCUSED INTER VENTIONS

CFT and other compassion-​focused approaches are empirically supported in

neurotypical samples. For instance, data summarized in a recent systematic re-
view of 14 studies (Leaviss & Uttley, 2015) and recent meta-​analysis of 21 studies
 180

Table 14-​1 Compassion Focused Therapy: An Overview of Therapy Phases, Interventions, and Techniques
Phases of CFT Purpose of Intervention and Examples of Techniques Autism-​Relevant Adaptations
Psychoeducation: the flow of life Why: introduce CFT model; outline evolutionary • clarify whether shame is associated with thoughts about
explanation for, and de-​shaming of, present difficulties (e.g., social interaction
“not your fault,” “we did not choose to be born here, now, in • identify strengths
this context”) • note that people with autism may have been the driving
force in Stone Age cave paintings and helped to build
pyramids
Psychoeducation: three-​systems Why: introduce CFT model, explore the three-​affect • reduce complexity of language
model systems and notion that we have “tricky brains”; this • use different colors or circle sizes to represent three
can enhance flow of compassion to others as it raises the systems
possibility that we all have different models of ourselves
Developing self-​soothing Why: learn how to activate and regulate the • embed reasonable adjustments in self-​soothing activities
strategies soothing system (e.g., to the temperature, sound, light)
•
How: practice deep-​rhythm breathing; relaxation strategies; list enjoyable activities people can do alone or with others
imagery exercises (e.g., safe/​calm place, compassionate
coloring); listen to relaxing music; participate in calming
activities
Enhancing emotion recognition Why: enhance recognition; highlight bidirectional • enhance emotional literacy
skills relationships between emotions, behaviors, and responses, • use mindfulness to notice urges of different emotions
in the self and others • develop idiosyncratic scales to depict gradations of
How: psychoeducation; behavioral experiments or tasks emotions (and associated physiological arousal)
testing out experiences of, and reactions to, positive • draw pictures of different emotions to help externalize
emotions; explore evolutionary explanations for each these
emotion and alternative behaviors
 18

Addressing fear of compassion Why: address compassion-​interfering thoughts/​beliefs (e.g., • provide psychoeducation about primary and secondary
being compassionate is a sign of weakness), and primary emotions
emotions activated by compassion responses (e.g., worry/​ • inquire about thoughts of meeting others; explore self-​
fear activated by kindness) criticism as a potential attempt to change themselves
How: Socratic conversations about past experiences and or others; validate the emotions that arise from
the meaning of these; cognitive interventions to target less experiencing this
helpful assumptions and beliefs • allow more time for behavioral experimentation
• use visual/​written summaries
Compassionate functional Why: identify links between: (a) influential experiences • provide examples if people struggle to identify
analysis and events predisposing to shame-​based difficulties, (b) key consequences
fears, (c) safety behaviors, and (d) intended and unintended • repeat for different situations
consequences
How: functional analysis
Learning and practicing: caring Why: to experience compassion in three behavioral • use sensorily adapted mindfulness to notice and slow
commitment attributes; to begin noticing suffering in oneself and others down responses of getting stuck in, or avoiding, distress
How: compassionate memory techniques; develop a “care • Socratic exploration of how others know we are suffering
box,” comprising objects that evoke calm or calm/​relaxed • use time-​limited special interests to feel safe
memories • include sensorily pleasurable objects in a “care box”
Learning and practicing: Why: to turn toward suffering and understand unintended • incorporate new, helpful reflections into imagery or role
strength consequences of turning away from suffering play to show strength
How: soothing-​rhythm breathing and safe-​place imagery • compare different postures in detail, using the mountain
to increase tolerance of powerful emotions; mountain meditation exercise
meditation exercise • with consent, ask family to note changes in posture
between sessions
Learning and practicing: Why: to have choice over how to live, approach suffering • summaries positive statements on cue cards
wisdom and alleviate this • use Socratic dialogue about how to connect to others via
How: inner best friend exercise (treating/​talking to yourself less expressed emotions (i.e., when suffering)
as you would a best friend); generate positive self-​statements
(continued )
 182

Table 14-1 Continued

Phases of CFT Purpose of Intervention and Examples of Techniques Autism-​Relevant Adaptations
Putting it all together Why: develop an image of the self that is “equal, included
• explore each of the three qualities described, from the
and different” perspectives of (i) receiving these, (ii) giving these to
How: consolidation of previoulsy mentioned interventions others, and (iii) observing these between others
• compile a flashcard of warning signs of becoming socially
exhausted, and ways of getting adjustments
Developing social skills Why: enhance knowledge, skills and confidence in • clarify understanding of social relationships
developing adaptive, secure affiliative relationships; • consider drawing social circles with the person in the
consider whether self-​criticism or shame impact upon middle, family in a circle around them, and moving
interactions/​relationships in circles further out, to identify friends, colleagues,
How: psychoeducation; chairwork to explore different acquaintances and strangers; make this visual—​different
roles within different relationships; systemically informed colored circles representing different types of relationship
conversations about important past and current and responses to them
relationships • use systemic techniques to explore personal narratives and
meaning making about autism
Enhancing assertiveness Why: to manage the wider context of adjustments needed • identify scenarios involving disclosing the autism
for people to live well in work, relationships, health diagnosis, to whom, and what this felt like
appointments, and other situations • discuss thoughts/​beliefs and emotions about masking—​
How: chairwork; role play; imagery exercises and the degree to which this may link to the formulation
Managing therapy endings Why: for people to be empowered to make choices over • plan for gradual tapering of sessions
how they live • compile diagrammatic therapy blueprint or video/​audio
How: make a therapy blueprint; problem solve potential recordings of key points (use the therapist’s voice if this
setbacks; compassionate letter writing helps)

Adapted from Cowles et al., 2020; Gilbert 2009a, 2009b.

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Compassion-Focused Therapy183

(Kirby et al., 2017) have indicated that CFT is associated with improved self-​com-
passion, mood, anxiety, stress, and self-​esteem, as well as reduced self-​criticism.
No studies, to our knowledge, have described CFT for people with autism.
A few studies have examined effectiveness and/​or acceptability of CFT for adults
with intellectual disabilities a proportion of whom also had autism), individually
(Cooper & Frearson, 2017; Cowles et al., 2020) and in six session groups (Clapton
et al., 2018; Goad & Parker, 2020; Hardiman et al., 2018). Given the co-​occur-
rence of intellectual disabilities and autism (Emerson & Baines, 2010) and poten-
tial commonalities in some risk factors for mental health symptoms, brief review
of these studies here seems appropriate. Interventions have principally sought to
enhance self-​compassion, general mental health, trauma-​related symptoms, and
low mood. Standard CFT interventions were offered, with some adaptations, no-
tably: (a) reducing complexity of psychoeducation; (b) more simplistic formula-
tion; (c) slower session pacing; (d) less abstract information; (e) use of visual aids
(e.g., diagrams, workbooks); (f) frequent repetition and practice; (g) involving
family/​caregivers to prompt homework completion and reinforce ideas; and
(h) embedding compassion-​focused principles at home. Results indicated subjec-
tive and/​or objective improvements in mood, anxiety, self-​criticism, and general
functioning. Qualitative feedback indicated some participants found therapy to
be de-​shaming and normalizing: they realized they had shared experiences and
difficulties and felt together with, rather than separate to, others.

CASE STUDY

Background

Clara was in her thirties when she was referred to the service. She had previously
been diagnosed with depression, obsessive compulsive disorder (OCD), and border-
line personality disorder, prior to receiving an autism diagnosis, in her late twenties.
She grew up with her mother, described as quiet, and her father, described
as inexpressive and uncompromising. He often insulted Clara, especially when
she was seeking help (e.g., with homework), and “walked out” of the family
home during her teens. She recalled enjoying school formalities (e.g., studying,
completing coursework about circumscribed interests), yet she found transitions
between classrooms and subjects, and unstructured interactions, difficult. Break
times were unpredictable and overwhelming, so she often hid in the bathrooms.
She was physically, verbally, and financially harassed. She perceived her peers “got
on” well, whereas she felt at a loss, not knowing what to say or how to join in, and
on the periphery of groups.
As an adult, Clara lived with her mother and was relatively independent. She
maintained a restricted diet, primarily due to sensory aversions. Her sleep/​wake
cycle was slightly reversed and she typically felt fatigued. She often felt distressed,
managing this by hair pulling and making impulsive online purchases. Her so-
cial network was limited. She was closest to her mother, mainly communicating
184

184 P sychological T herapies for A dults W ith A utism

with others via email and internet forums. In-​person interactions were strained
due to difficulties with understanding social rules and cues and problems en-
gaging reciprocally. Conversations could be short and stilted, or could result in
monologuing about topics of interest to her. Clara coped with social interactions
by learning to emulate others and mentally scripting conversations, which is
conceptualized by some as camouflaging. While this partially helped to reduce
uncertainty in social situations, it also required substantial mental energy and
incurred fatigue. Consequently, Clara rested most evenings, thereby missing out
on potential opportunities for social contact. She worked as an administrator,
reliably and consistently. As at school, unstructured times and social activities
(e.g., lunch breaks, work socials) were problematic. She experienced some in-
terpersonal difficulties at work, resulting in her feeling bullied, stressed and low.
She subsequently presented to mental health services and was diagnosed with
autism.

Assessment

Given the history of difficult interpersonal experiences, sense of isolation, and

tendency for camouflaging, assessment took five sessions. Overall, this was to
(a) enhance Clara’s capacity to feel more at ease with expressing more authentic
thoughts, feelings, and behaviors; (b) encourage development of engagement and
trust, which is requisite for subsequent shame-​based discussions; and (c) allow for
habituation to the location, context, and therapist.
The assessment focused on standard therapy domains and CFT-​specific themes,
including:

• Autism diagnosis: how she referred to, and made sense of (a) traits
before diagnosis, (b) at the time of diagnosis, (c) during life transitions,
and (d) presently;
• Family support: if and how family members were supportive during
childhood and now;
• Relationships: her interest in other people, and having friendships or
relationships;
• Alexithymia: if and how she described emotions;
• Relating to self and others: if, when, and how she noticed she was
different from others, and how this influenced her behavior;
• Other-​to-​self relating: what she thought others thought of her, across
contexts;
• Self-​to-​other relating: what she thought about others when
socializing; and
• Self-​to-​self relating: what she thought about herself.

Within initial sessions, the therapist aimed to convey and model a sense of un-
derstanding and compassion toward Clara. This involved clarifying how best
185

Compassion-Focused Therapy185

to engage; for example, confirming environmental/​ sensory considerations,

ascertaining her preferences for sustaining eye contact (or not), building time into
sessions for Clara to acclimatize to the context and as discussion topics changed,
and asking her to say if she needed more time to process information or if ques-
tion/​remarks lacked clarity. Focusing on these steps was also intended to en-
courage a shift from the threat system to the soothing system, in order for Clara
to have a different experience to the many other social situations in which she felt
the need to deliberately try to “fit in.” Overall, talking with openness and curiosity
about someone’s preferences and capacity to influence their context helps to nor-
malize the process of acquiring reasonable adjustments is a key aspect of CFT for
people with autism.

Formulation

Formulation aimed to better understand Clara’s intentions in social situations;

for example, did she try to fit in so as to feel connected to others? Did she try to
manage these situations to increase a sense of certainty over everyday life? Did she
enjoy time away from others? Latterly, the formulation focused on establishing
unintended internal and external consequences of actions (e.g., internal, how she
viewed anxiety, sadness, memories, or herself as a person; and external, such as
rejection, criticism, and losses).
Functional analysis helped Clara identify earlier experiences of trying to feel
connected with others that had been marred by negative core beliefs about her-
self and others (e.g., that they were punitive, dismissive, more able; see Figure
14-​2, adapted from Gilbert & Irons, 2015). Moreover, the effort of trying to fit
in and self-​monitor during interactions exacerbated fatigue and perpetuated
worry. A tendency for black-​and-​white thinking helped her to accomplish
work adeptly, yet it affected social interactions. Difficulties with mentalizing
others’ speech and actions also “hijacked” her strength in details; she often
noticed inconsistencies in her interactions, resulting in self-​criticism (e.g., for
not being perfect). Importantly, part of the formulation also involved noting
strengths: Clara showed dedication, loyalty, a detailed and focused style that
helped her understand complex processes and see the beauty in objects others
overlooked. She also had a profound empathy for people she related to.

Goals

Historically, Clara’s goals largely focused on trying to “fit in” and be “the same”
as others (e.g., learning to maintain eye contact and to make socially desirable
comments). Yet, working toward these exacerbated a sense of difference and
shame, indirectly giving more credence to negative beliefs.
 186

Unintended consequences

Safety behaviors External:

Others are unaware of any
Historical Influences struggles or adjustments that could
Internal:
be made
Avoid expressing emotions,
.
Emotional/shame memories: Key Fears particularly anger, ruminate on
Bullied by father when what others think of me Bald patches, further criticism on
showing vulnerability/asking the speed of my work
for help
External:
External: Practice conversation topics Increase in absence from social
Being isolated at school and Rejection, being criticized beforehand (camouflage), situations and work
perceiving a lack of interest work extra hard to consider
from others other people’s needs (drive), Internal:
avoid discomfort by avoiding Fatigue, increase in worry leading
people at unstructured to more camouflaging
Self as: Internal: occasions
Unwanted, less than others, I'm defective
different
My feelings are too much Pull hair Self-to-self relating
Others as: There’s something wrong with me
Punitive, dismissive, more able and it’s obvious to everyone else
I am beyond help Become slower and
but me and no one can handle it.
increasingly detailed in
I’m alone
completing tasks

Emotions and feelings:

Low mood, shame, anxiety

Figure 14-​2 Functional analysis

187

Compassion-Focused Therapy187

Clara’s therapy goals were to:

• Improve her mood and anxiety

• Request reasonable adjustments at work and in public
• Increase social confidence and develop relationships
• Feel more able to enjoy engaging in highly detailed, nonsocial interests,
with and without others

At times, goal setting in CFT can be complicated. Therapists may have to weigh
the advantages and constraints of working on specific goals and building engage-
ment through collaborating in the present moment, while finding out more about
a person’s difficulties and values in the process. Many adults with autism have
internalized perceived failures educationally, socially, and occupationally, giving
rise to worries about, memories of, and a lack of confidence in, striving toward
outcomes they would ideally like to pursue.

Therapy

Overall, CFT for people with autism is intended to create a space for “live”
practice for each of the features of compassion—​strength, caring commitment,
and wisdom—​ whereby they feel able to ask for autism-​ relevant reasonable
adjustments. This is the most important foundation to build a life equal to others,
be included with others, dare to be different from others, and allow for (and ap-
preciate) each other’s neurodiversity.
Clara attended 20 CFT sessions, the standard number of sessions offered at the
service, focusing on:

• Psychoeducation: the shaping of our experiences—​the flow of life; three-​

systems model of emotion
• Development of soothing strategies
• Labelling of emotions in the body
• Compassionate functional analysis
• Learning and practicing: (a) caring commitment, (b) strength, and
(c) wisdom
• Social and assertiveness skills development

Several adaptations were incorporated to make CFT more accessible (see Table
14-​1 for autism-​relevant adaptations). These also involved: (a) fewer imagery
exercises focused on the compassionate other and compassionate self; and
(b) combining the three qualities of compassion with questions from different
perspectives, to practice experiencing compassion (i.e., caring commitment,
strength, and wisdom, all from receiving, giving, and observing perspectives).
18

188 P sychological T herapies for A dults W ith A utism

Outcomes

Overall, Clara felt more confident in “being myself ” after 20 sessions. She re-
ported far less drive to “fit in,” and felt more able and “safe” to do more tasks she
enjoyed, resulting in her starting new hobbies that involved group classes. This
increased her social network. She began telling others when she felt overwhelmed
socially, and why. She disclosed her autism diagnosis at work, enabling her to ac-
cess reasonable adjustments.
Clara’s scores on the FOCS changed from 25 to seven points in fears of compas-
sion for others, 38 to 17 for fears of compassion from others, and 33 to six points
in compassion from herself to herself. This supported her view that she was man-
aging her threat more helpfully across the domains and that her highest fear was
fear of compassion from others. While scores reduced reliably in a clinical sense,
fear of compassion remained higher than the other domains, supporting the need
for reasonable adjustments and skillful pacing in her social interactions.

THERAPIST CONSIDERATIONS

As with all therapeutic approaches, there are some considerations for therapists
using CFT with clients who have autism.

• Many people with autism work extremely hard, using their drive system
to manage threats in everyday life. Understandably, when they trust
therapists sufficiently to work on these areas, therapists can feel a pull
to work extremely hard too. This can be to avoid the sadness that often
occurs when receiving and adjusting to a diagnosis of autism.
• Slowly explore interventions. Be curious about clients’ emotions and any
avoidance or subtle expressions of shame. This helps people apply the
techniques “live” and feel able to take a positive risk to make a change,
despite the much higher short-​term discomfort this brings.
• Changing topic is difficult for some people, and results in reliance
on saying “I don’t know.” Labelling this can provide an early example
into the importance of using the quality of strength to gain reasonable
adjustments.
• Be mindful of individuals attending sessions but not doing homework.
Clarify if there is any pressure from family members, partners, or
employers for the person to change. The person may feel shame
from not knowing how to do a task or have a prediction they will
“fail.” This is an opportunity to use functional analysis and build the
relevant skills for CFT. It is also possible to delve into the experiences
that shaped this prediction. Be mindful of responding to these fears
and resultant avoidance or defensiveness, in an open, fallible way, to
189

Compassion-Focused Therapy189

help both therapist and individual experience safety to learn through

mistakes.
• Model the flow of compassion: it is vitally important to help people
engage with different ways of responding to their emotions. This can be
done by modeling the variety of techniques listed.

CONCLUSIO NS

People with autism commonly experience transdiagnostic symptoms, including

self-​criticism and shame-​based difficulties, rendering engagement in more tra-
ditional talking therapies, and with therapists, problematic. Empirical sup-
port for CFT in neurotypical adults and adults with an intellectual disability is
growing. Clinically, we have found that many adults with autism find that CFT
interventions and techniques resonate with them, subject to incorporating
adaptations and encouraging requests for (reasonable) adjustments. We suggest
that further sustained research is required to understand links between compas-
sion and mental health in people with autism and the effectiveness of CFT for this
clinical population.

REFERENCES

Allan, S., & Gilbert, P. (1995). A social comparison scale: Psychometric properties and
relationship to psychopathology. Personality and Individual Differences, 19(3),
293–​299.
Baron-​Cohen, S., Wheelwright, S., Skinner, R., Martin, J., & Clubley, E. (2001). The
autism-​ spectrum quotient (AQ). Evidence from Asperger syndrome/​ high-​
functioning autism, males and females, scientists and mathematicians. Journal of
Autism & Developmental Disorders, 31(1), 5–​17.
Beaumont, E., & Hollins Martin, C. (2015). A narrative review exploring the effective-
ness of compassion-​focused therapy. Counselling Psychology Review, 30(1), 21–​32.
Clapton, N., Williams, J., Griffith, G., & Jones, R. (2018). “Finding the person you re-
ally are . . . on the inside”: compassion focused therapy for adults with intellectual
disabilities. Journal of Intellectual Disabilities, 22(2), 135–​153.
Cooper, R., & Frearson, J. (2017). Adapting compassion focused therapy for an adult
with a learning disability: A case study. British Journal of Learning Disabilities, 45(2),
142–​150.
Cowles, M., Randle-​Phillips, C., & Medley, A. (2020). Compassion-​focused therapy
for trauma in people with intellectual disabilities: A conceptual review. Journal of
Intellectual Disabilities, 24(2), 212–​232.
Emerson, E., & Baines, S. (2010). The estimated prevalence of autism among adults with
learning disabilities in England. Improving Health and Lives: Learning Disabilities
Observatory, Durham.
190

190 P sychological T herapies for A dults W ith A utism

Galvin, J., Howes, A., McCarthy, B., & Richards, G. (2020). Self-​compassion as a medi-
ator of the association between autistic traits and depressive/​anxious symptoma-
tology. Autism, epub. doi.org/​10.1177/​1362361320966853
Gilbert, P. (2009a). Introducing compassion-​focused therapy. Advances in Psychiatric
Treatment, 15(3), 199–​208.
Gilbert, P. (2009b). The nature and basis for compassion focused therapy. Hellenic
Journal of Psychology, 6(20), 273–​291.
Gilbert, P. (2014). The origins and nature of compassion focused therapy. British Journal
of Clinical Psychology, 53(1), 6–​41.
Gilbert, P., & Choden (2014). Mindful compassion: How the science of compassion can
help you understand your emotions, live in the present, and connect deeply with others.
New Harbinger Publications.
Gilbert, P., & Irons, C. (2015). Compassion focused therapy. In S. Palmer (Ed.), The
beginner’s guide to counselling & psychotherapy (pp. 127–​139). SAGE Publications Ltd.
Gilbert, P., McEwan, K., Matos, M., & Rivis, A. (2011). Fears of compassion: Development
of three self-​report measures. Psychology and Psychotherapy: Theory, Research and
Practice, 84(3), 239–​255.
Goad, E. J., & Parker, K. (2020). Compassion-​focused therapy groups for people with
intellectual disabilities: An extended pilot study. Journal of Intellectual Disabilities,
epub. doi.org/​10.1177/​1744629520925953
Hardiman, M., Willmoth, C., & Walsh, J. (2018). CFT & people with intellectual
disabilities. Advances in Mental Health and Intellectual Disabilities, 12(1), 44–​56.
Howes, A., Richards, G, & Galvin, J. (2020). A preliminary investigation into the rela-
tionship between autistic traits and self-​compassion. Psychological Reports, epub.
doi.org/​10.1177/​0033294120957244
Hull, L., Petrides, K., Allison, C., Smith, P., Baron-​Cohen, S., Lai, M. C., & Mandy,
W. (20176). “Putting on my best normal”: Social camouflaging in adults with au-
tism spectrum conditions. Journal of Autism and Developmental Disorders, 47(8),
2519–​2534.
Kirby, A., Baranek, G., & Fox, L. (2016). Longitudinal predictors of outcomes for adults
with autism spectrum disorder: Systematic review. OTJR: Occupation, Participation
and Health, 36(2), 55–​64.
Kirby, J., Tellegen, C., & Steindl, S. (2017). A meta-​analysis of compassion-​based
interventions: Current state of knowledge and future directions. Behavior Therapy,
48(6), 778–​792.
Lai, M., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., Szatmari, P., & Ameis, S.
(2019). Prevalence of co-​occurring mental health diagnoses in the autism popula-
tion: A systematic review and meta-​analysis. The Lancet Psychiatry, 6(10), 819–​829.
Leaviss, J., & Uttley, L. (2015). Psychotherapeutic benefits of compassion-​ focused
therapy: An early systematic review. Psychological Medicine, 45(5), 927–​945.
Lee, D., Scragg, P., & Turner, S. (2001). The role of shame and guilt in traumatic events: A
clinical model of shame‐based and guilt‐based PTSD. British Journal of Medical
Psychology, 74(4), 451–​466.
MacBeth, A., & Gumley, A. (2012). Exploring compassion: A meta-​analysis of the asso-
ciation between self-​compassion and psychopathology. Clinical Psychology Review,
32(6), 545–​552.
19

Compassion-Focused Therapy191

Maiano, C., Normand, C., Salvas, M., Moullec, G., & Aimé, A. (2016). Prevalence of
school bullying among youth with autism spectrum disorders: A systematic review
and meta‐analysis. Autism Research, 9(6), 601–​615.
Murphy, D., Glaser, K., Hayward, H., Eklund, H., Cadman, T., Findon, J., Woodhouse,
E., Ashwood, K., Beecham, J., Bolton, P., McEwen, F., Wilson, E., Ecker, C., Wong, I.,
Simonoff, E., Russell, A., McCarthy, J., Chaplin, E., Young, S., & Asherson, P. (2018).
Crossing the divide: A longitudinal study of effective treatments for people with
autism and attention deficit hyperactivity disorder across the lifespan. Programme
Grants for Applied Research, 6(2), 1–​240.
Neff, K. (2003). The development and validation of a scale to measure self-​compassion.
Self and Identity, 2(3), 223–​250.
Petrina, N., Carter, M., & Stephenson, J. (2014). The nature of friendship in children
with autism spectrum disorders: A systematic review. Research in Autism Spectrum
Disorders, 8(2), 111–​126.
Rumball, F. (2019). A systematic review of the assessment and treatment of posttraumatic
stress disorder in individuals with autism spectrum disorders. Review Journal of
Autism and Developmental Disorders, 6(3), 294–​324.
Sowislo, J., & Orth, U. (2013). Does low self-​esteem predict depression and anxiety?
A meta-​analysis of longitudinal studies. Psychological Bulletin, 139(1), 213.
Spain, D., Zıvralı Yarar, E., & Happé, F. (2020). Social anxiety in adults with autism: A
qualitative study. International Journal of Qualitative Studies on Health and Well-​
Being, 15(1), 1803669.
Weiss, J., & Fardella, M. (2018). Victimization and perpetration experiences of adults
with autism. Frontiers in Psychiatry, 9, 203.
Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta
Psychiatrica Scandinavica, 67(6), 361–​370.
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15

Eye Movement Desensitization

and Reprocessing Therapy
NAOMI FISHER AND CAROLINE VAN DIEST ■

KEY CONSIDERATIONS

• EMDR can be an effective therapy for autistic adults.

• Therapists need to be flexible in their approach, responding to the
individual in front of them and formulating their experiences.
• Living an autistic life can be highly stressful even without experiencing a
major trauma, and EMDR can be used to alleviate this.
• Adaptations to EMDR include simplifying the cognitive demands of
the protocol, mapping from emotions and body sensations, working
from the here and now, being more directive, and using some of the
adaptations developed for use with children.
• EMDR should never be used to make a person’s behavior more convenient,
and the function of a behavior should always be part of the formulation.

OVER VIEW

Eye movement desensitization and reprocessing (EMDR) therapy is a psycho-

therapy which is recognized by the National Institute for Health and Clinical
Excellence (NICE) and the World Health Organization (WHO) as an effective
treatment for posttraumatic stress disorder (PTSD). It was developed by the
American clinical psychologist Francine Shapiro in the 1980s (Shapiro, 1989).
EMDR therapy is powerful and should only be attempted after having attended
an accredited training program and under appropriate supervision.
In this chapter we describe EMDR and the adaptive information processing
model, and we briefly summarise the evidence base for EMDR in general and autistic
populations. We will use a case example to demonstrate how EMDR can be used
with autistic people. This is an illustrative example rather than a specific individual.
193

EMDR Therapy193

WHAT IS EM DR?

EMDR is a structured psychotherapy underpinned by a trauma-​ informed

model. The conceptual framework suggests that psychological problems in the
present day can be caused or influenced by distressing (and therefore “unproc-
essed”) memories of the past. The adaptive information processing model (AIP;
Shapiro, 2007) suggests that memories for most life events are naturally inte-
grated into an individual’s existing memory networks, becoming part of their
autobiographical memory store. This is referred to as “adaptive information pro-
cessing.” These “processed” memories are recalled without significant distress in
the present day, even if the event remembered was distressing at the time. Many
people can remember that they were anxious when taking exams without actu-
ally re-​experiencing the physical and emotional sensations of anxiety.
When a person is highly physiologically aroused, memories are not integrated
in the same way. They can continue to cause distress and to influence behavior.
An unprocessed memory could result in a person avoiding driving, because
when they get into a car, they re-​experience the terror of an earlier road traffic
accident.
Recently, there has been an increased awareness of the way in which trauma
plays a part in the etiology of a range of experiences and behaviors beyond
those typically associated with PTSD. These include psychosis (Varese et al.,
2012), eating problems, people diagnosed with personality disorder, substance
misuse, depression. and anxiety. In all of these cases, EMDR could potentially
be helpful.
EMDR therapy targets unprocessed memories directly. This is done using dual
attention. The person connects to their distress while engaging in some form of
bilateral stimulation (BLS). This is typically either eye movements, alternate tap-
ping (e.g., on the back of the person’s hands or knees), or auditory clicks. EMDR
can be used remotely with a therapist, where BLS is delivered through self-​tapping
or by an app. The use of bilateral stimulation (BLS) to facilitate processing is a
unique element of EMDR.
The standard EMDR protocol consists of eight phases. These include assess-
ment and history taking, with trauma processing happening from phase three
onwards, and the protocol ends with closure exercises. The protocol is a frame-
work rather than a manual. The therapist uses it to establish a safe and containing
structure for the client. During EMDR, clients typically experience a change in
their relationship with the memory, with more adaptive material emerging as well
as the traumatic memory becoming less distressing.
The strongest evidence for the efficacy of EMDR is with PTSD, but EMDR is
increasingly considered a transdiagnostic approach. Given recent concerns about
the lack of reliability of diagnostic categories and the findings of shared genetic
risk factors between mental health conditions (Caspi et al., 2014; Hengartner &
Lehmann, 2017; Insel, 2010), it seems arbitrary to restrict access to a therapy by
a diagnosis. From an information-​processing perspective, there is no reason why
the nature of a life event should dictate treatment. It is the nature of the psycho-
logical response to an event that matters.
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194 P sychological T herapies for A dults W ith A utism

FORMULATION: TRAUMA AND AUTISM

SPECTRUM DISORDER

The distinction between focusing on what happened to someone and focusing on

a person’s response to whatever happened may be particularly important for autistic
people. The writings of autistic people tell us that, for some, the events of a typical
life can be intensely stressful (Poe, 2019; Ratcliffe, 2020; Rowe, 2013; Williams,
1998). “Trauma memories” are created during times of high physiological arousal,
something which many writers with autistic describe feeling as they go about their
everyday lives. Many autistic people attempt to compensate for their differences,
but this comes at a cost. Years of sustained effort can cause burnout or mental
fatigue.
Autistic people may also experience frequent adverse events. Vulnerability for
unhealthy relationships is increased, as are risk factors for depression, anxiety,
and suicidal ideation (Livingston et al., 2019). Autistic people may be more likely
to experience bullying, hostility, and social exclusion (Kerns et al., 2015). There
is also suggestion in the research (and much anecdotal evidence) that events that
are seen to be mildly annoying by many people can be perceived as extremely dis-
tressing or traumatic by autistic people (Taylor & Gotham, 2016). This could in-
clude nondisabled people parking in a disabled parking space, someone breaking
an agreement, or an appointment starting late.
Taken together, these can result in a person feeling and behaving as if they are
traumatized, even when they have not experienced an event which would gener-
ally be classified as a “trauma.” Figure 15-​1 summarizes this within an ecological
model. In this model, disability and distress are not an inevitable consequence of
difference. A person interacts with the world in a bidirectional fashion, meaning
that both individual characteristics and the response of society to those charac-
teristics affects outcome.
This means that therapists should look beyond what they consider to be “trau-
matic events,” and instead examine the meaning of a wide range of adverse events
or stressors in a person’s life. This should inform their formulation, an essential
part of EMDR therapy.

EFFECTIVENES S OF EMDR IN THE

GENERAL POPULATION

Several meta-​analyses have shown that EMDR is an effective treatment for PTSD
in adults (Chen et al., 2015; Khan et al., 2018; Novo Navarro et al., 2018) and
children (Rodenburg et al., 2009). A systematic review of randomized controlled
trials (RCTs) of EMDR found that it is useful for a range of mental health problems
including phobias, substance misuse, depression, and panic disorder (Valiente-​
Gomez et al., 2017).
 195

Public Policy
very little help available after diagnosis, difficulties in getting diagnosis,
social and sensory disability not recognized, difficulties in accessing
support, difficulties in getting disability benefits without an intellectual
disability, mental health services may not understand autism or may refuse
treatment on the basis of autism

Community attitudes
prejudice, stereotying, stigma, lack of
understanding, discrimination, judgement
“awareness” without acceptance or flexibility,
“othering”, scepticism about the reality of diverse
experiences

Societal structures
and institutions
rigid school requirements, rigid workplace
requirements, capacity to adapt institutions
(or not) to a person’s individual needs

Reactions of other
people
bullying, hostility, abuse, pressure to
conform, exploitation, punishment,
exclusion, lack of comprehension,
family support, friendships with others,
sharing common interests

Individual characteristics
sensory sensitivities, social
communication difficulties, executive
functioning problems, concrete
thinking style, special interests,
intellectual disability, physical
disability, identity

Figure 15-​1 An Ecological Model of Autism: Individual Characteristics Are Only One Part of the Experience of
Being Autistic
196

196 P sychological T herapies for A dults W ith A utism

HOW DOES EM DR WORK?

There are several hypotheses as to the mechanism of EMDR. There is good ev-
idence that bilateral stimulation, such as eye movements, taxes the working
memory (Van Den Hout & Engelhard, 2012) and that using eye movements while
activating an emotionally charged memory results in the memory becoming
less emotional and vivid (Van Den Hout et al., 2013). Other hypotheses focus
on the alternating nature of the eye movements, with some suggesting that eye
movements produce a state similar to REM sleep (Stickgold, 2002), while others
propose that it enhances communication between the hemispheres of the brain,
which enhances the retrieval of episodic memories (Propper & Christman, 2008).
It is likely that EMDR works via multiple mechanisms. The working-​memory
hypothesis alone does not account for the “reprocessing” aspect of EMDR,
whereby a new, more adaptive (consolidated) way of thinking about the event
emerges (Solomon & Shapiro, 2008).

EFFECTIVENES S OF EMDR FOR AUTISTIC PEOPLE

There is limited research on EMDR and autism, although clinically this is a growth
area. The earliest work consisted of case studies. These demonstrated that EMDR
could be effective with autistic adults who also had intellectual disabilities (Barol &
Seubert, 2010). The adaptations made included additional resources, visualization,
metaphor, narrative techniques, and directive interventions. Some people required
the target to be somatic or emotional experiences rather than a specific memory.
Three of the four participants processed current stressors. They reported that each
participant managed affect better following EMDR. These examples show how
EMDR can be used even when a client does not link their distress to past experiences.
Kosatka and Ona (2014) used intensive EMDR (three times per week over
3 weeks) with a 21-​year-​old female with a diagnosis of Asperger’s syndrome
without intellectual disability. After eight sessions of EMDR, her PTSD symptom
score was significantly reduced to below clinical levels and maintained at 8-​month
follow-​up. Her functioning significantly improved overall, raising the possibility
that some challenges were due to trauma and not Asperger’s syndrome.
The first larger scale study of EMDR with autistic people used a within-​study
case control design, with adult participants acting as their own controls while
receiving treatment as usual (Lobregt-​van Buuren et al., 2018). Twenty-​one
participants completed this study with an average of seven sessions of EMDR. The
study used the Dutch EMDR protocol for children (which reduces the demands as
compared to the standard protocol). They found a significant reduction in PTSD
symptoms, psychological distress, and autistic features including social motiva-
tion and communication. Participants were less impaired in their daily life after
EMDR and results were maintained at 6–​8 week follow up.
Morris-​Smith and Silvestre describe using EMDR with 10 children on the autistic
spectrum, eight of whom showed improvement (Morris-​Smith & Silvestre, 2014).
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EMDR Therapy197

They propose that autistic children can be traumatized by daily living experiences
(which could include being bumped into in the playground, or being told off
by a teacher) due to their difficulties in making sense of the social world. They
emphasized how proactive and flexible therapists need to be in doing this work.
Most recently, Leuning has used EMDR with autistic children in order to target
stressful daily life experiences. Her study is unpublished but has been presented
at conferences. After 10 weekly sessions of EMDR some participants showed
improvements in their social awareness and perceived stress scores. There was
some reduction in self-​reported autism symptoms (Leuning, 2020).
A reduction in autistic features, including social communication and moti-
vation following EMDR, is found across several studies (Kosatka & Ona, 2014;
Leuning, 2020; Lobregt-​van Buuren et al., 2018; Morris-​Smith & Silvestre, 2014).
This is surprising. It is possible that some behaviors which are perceived to be
symptoms of autism may be due to unresolved stress responses. These behaviors
could include obsessional and repetitive behavior, social anxiety, separation anx-
iety, demand avoidance, challenging behavior, and sleep problems. Given the
difficulties experienced by many autistic people, unresolved stress responses and
trauma may be a frequent part of the presentation.

CASE STUDY: “MY FEAR KEEPS ME SAFE”

The last part of this chapter is a case example. Through it, we will highlight how
the EMDR protocol can be adapted to make it more accessible.

Background

Donny was a 34-​year-​old man with a diagnosis of autism and a mild intellectual
disability. He lived in a group home while his parents lived nearby.
Donny presented with needle phobia. He had a history of food intolerance
from childhood. In order to avoid a reaction, he had severely restricted his diet.
His parents felt allergy testing (which involved a needle) might help to expand his
diet. Donny could not allow a needle close to him, kicking and fighting anyone
who tried to suggest it.
At assessment, Donny found it hard providing details about the past. His
mother was invited to attend history-​taking sessions. She reported that Donny
was bullied at primary school. His food intolerances were not yet diagnosed, and
he had often felt sick. Doctors assumed that his stomach aches were due to unwill-
ingness to attend school and encouraged his parents to keep sending him.
Donny had tried to escape from school several times. He remembered finding
the school’s response to this (isolation in the head teachers’ office) terrifying as he
had had no idea when he would be allowed to leave. Diagnosed with autism at the
age of 10, he moved to a specialist secondary school. Here he felt unsafe due to the
disruptive behavior of other students.
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198 P sychological T herapies for A dults W ith A utism

present
past

future
Bullying and frightening Food restrictions and control Ability to choose whether to
experiences at school Lack of trust of other people have medical investigations
Punishment when tried to especially health or not
escape school professionals Increased feeling of
Food a source of pain Fear of needles competence and mastery
Didn't feel listened to or Special interest in Recognition that things can
understood escapology and martial arts be different now
(self-protection)
I can be safe
I am not safe I am not safe I can make choices
I am powerless I am powerless I can express myself and be
heard

Figure 15-​2 The Three-​Pronged Approach: Donny’s Experiences in the Past, Present, and
Hoped-​For Future

Donny had a special interest in self-​defense and escapology. He was an expert

in escape room puzzles and spent his free time devising his own escape games,
building working models in a shed at the bottom of his parents’ garden. He was a
keen member of a local karate club. He worked at a local warehouse and knew all
the potential routes out of the building, should a problem ever arise.
During assessment, an EMDR therapist will be looking for areas of strength
and resilience which could be used as resources. Special interests can be a rich
source of resource imagery as well as a way for a therapist to establish a thera-
peutic relationship. Part of the assessment should include asking for details of
a person’s special interests, and what it is specifically that they find engaging.
Family members may need to be involved at this stage and systemic issues should
be considered.

Case Conceptualization

The therapist’s formulation was that Donny’s apparent “phobia” was in fact part
of a bigger picture where he felt unsafe and powerless. His intense responses to
needles was just one part of this.
Figure 15-​2 builds on the simple framework to create a more elaborate formu-
lation, identifying targets for EMDR processing. The hypothesis was that Donny
had learnt that he was powerless and unsafe during his childhood. These feelings
were being triggered by how pressured he felt to have allergy testing and by the
way in which health professionals related to him (see Box 15-1).

Intervention

Before EMDR processing starts, the preparation phase establishes the therapeutic
relationship and develops self-​soothing skills, as well as systemic interventions.
The adaptations made are summarized in Box 15-1.
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EMDR Therapy199

Preparation Phase

The first task was to form a therapeutic alliance and to agree on collaborative
goals. The therapist started by finding out what really interested Donny. Donny
became enthusiastic as he showed the therapist several prototype escape room
games he had created. These, together with videos of himself at karate, were
used to create resource imagery. Donny practiced feeling powerful and com-
petent as he solved an escape room puzzle in his head and visualized doing
karate.
The therapist realized that Donny’s needle phobia was important because he
feared that without it he would be pressured into allergy testing. She talked to his
parents and they agreed that Donny would retain control over whether he had the
tests even if his phobia was resolved. Donny agreed he would be safer if he could
make informed choices regarding injections without feeling so fearful.
Donny and the therapist worked on creating a “calm place” which he could
imagine to self-​soothe. He chose his workshop. For many people, their calm
place may be most effective if it is active rather than static. Each session ended
with Donny describing an escape room puzzle he was designing in his workshop,
something he found calming and positive. If a person has trouble with visualiza-
tion, a photo or video can be used which they can store on their phone. Others
may want to draw, model, or use a soft toy or animal. The purpose of the “calm
place” is to access feelings of safety and therapists can be creative in how they
achieve this.

EMDR Processing

The therapist started with the standard EMDR protocol which she modified in
response to Donny’s needs.
Donny initially reported no emotional connection to his memories from child-
hood and so the decision was taken to start with recent events. A visit to the al-
lergy clinic was chosen. During the visit, Donny had become very distressed and
had corralled himself in a corner to protect himself. Emotional activation of a
target memory is an essential part of the EMDR protocol. Therapists may need to
be adaptable in order to help their client connect with their emotions, including
being flexible about what is chosen as a target.
The protocol requires a person to hold in mind a traumatic memory and iden-
tify the negative belief they have about themselves which still feels true now.
Donny found the challenge of holding the past in mind while identifying pre-
sent day beliefs extremely difficult. The therapist adapted by asking him about
his feelings and sensations. He described terror, and the therapist asked if “I’m
not safe” fitted with the memory. Donny confirmed that it did. In the standard
protocol, this “negative cognition” usually comes from the client. Suggesting a
negative cognition is an adaptation used with those who find it hard to verbalize
their thoughts.
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200 P sychological T herapies for A dults W ith A utism

Box 15-​1
Case Conceptualization With the AIP Model

Past experiences: Donny found school difficult and perceived it as a hostile envi-
ronment. Social and sensory problems meant he was confused and overwhelmed
for much of primary school. He tried to escape but was punished for it, which was
traumatic. Diagnosis came at the end of primary school when he transferred to a
secondary school for those with mild to moderate intellectual disabilities.
Secondary school was difficult due to the behavior of the other students. He
became anxious about what he was eating as he felt unwell for much of the time.
Health problems were dismissed by doctors until he was almost adult, when he
was diagnosed with intolerances to dairy and legumes. Family attachments were
strong and positive.
Unprocessed memories: 1. Punishment by head teacher at age 9 by being iso-
lated in his office. 2. Visiting doctor aged 8 and being diagnosed as malingering.
3. Physical violence by other students at secondary school. 4. Bullying at primary
school. 5. More recent memories of visiting allergy clinics.
All these events were linked by the underlying negative belief “I am not safe.”
Related to this was another belief : “I am powerless.”
Present day consequences: Donny lives his life as if he is not safe. He is lacking
trust in health professionals. He is restricting food choices with health and social
consequences, as he cannot eat away from home and will only eat very few foods.
His feelings of powerlessness mean that he does not believe that his voice will be
heard and his opinions taken into account. He has an ongoing feeling of lack of
safety and the necessity to protect himself. All of this means that he does not have
confidence that he will be safe without the intense threat response which has been
labelled a “needle phobia.”
Strengths and resilience: Donny’s special interests are linked to keeping him-
self safe, escapology, and martial arts. He is extremely talented at devising es-
cape room puzzles. He has positive relationships with family and makes friends
through his special interests. His interests provide a feeling of safety, connection
to others, and a chance to develop competence and mastery. Donny is in a stable
living situation where he is happy and holds down a job.
Goals/​future: Donny’s family want him to have allergy testing to expand his
diet. Donny wants to be able to make his own decisions about allergy testing and
other important decisions in his life. The therapist would like to help Donny feel
safer and more in control of his life.
   

Processing began with the allergy clinic memory. Donny rated the distress as-
sociated with the memory as a 9/​10 using a visual scale, an adaptation often used
with children. The therapist used eye movements, which Donny initially found
difficult but was able to follow after some practice. When processing became
blocked, the therapist asked him to “float back” to an earlier time when he had felt
the same. When therapists intervene in the processing, this is called a “cognitive
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EMDR Therapy201

Box 15-​2
Adaptations Made at Each Stage of Donny’s EMDR Therapy

Preparation:
Therapeutic relationship established using interests as basis for communica-
tion and conversation.
Resource imagery developed from special interests (competency, control and
mastery).
Calm place established from interests and explored in the here and now, using
videos and pictures as cues.
Psychoeducation regarding being heard, expressing self, and making choices.
Context The importance of the symptoms was explored and discussed with
Donny and his family.
Processing:
The standard EMDR protocol was initially used but a recent event was used as
the target since Donny connected more easily with this.
Adaptations were made as necessary (e.g. the assessment phase was somewhat
simplified in a way which is often used with children). Sessions were sometimes
shorter than usual, to avoid overwhelming Donny.
Donny found it hard to identify cognitions and to distinguish between how his
thoughts about himself in relation to a past memory, and his thoughts about his
life now.
The therapist helped Donny make the connection between how he had felt
more recently and how he had felt in the past by explicitly asking about this. She
suggested possible thoughts based on how Donny described his emotions.
Cognitive interweaves were used with a special focus on avoiding non-literal
use of language.
The therapist used sessions of talking interspersed with the EMDR sessions to
talk about what Donny was remembering and to identify new target memories.
Donny required support in verbalising his negative belief in relation to the trau-
matic event (I am not safe) but was well able to identify his emotions. This enabled
the therapist to guess at the negative belief. Other people may be able to identify body
sensations or thoughts but not emotions. It is not always necessary to name emotions
as long as a body sensation can be identified and emotional activation has occurred.
Eye movements were used as Donny tolerated these well. Distress levels were
collected using a visual scale.
Donny’s distress reduced but his beliefs related to the memory did not become
more adaptive, and so further adaptations were made. These included proactive
introduction of imagery into the processing and use of the EMDR Storytelling
technique (Logie et al 2020).
Outcome:
Adaptive Beliefs Donny reported adaptive thoughts such as “I can choose what
I do now, it was different when I was young” and ‘I am safe now, they can’t make
me do things’.
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202 P sychological T herapies for A dults W ith A utism

Systemic change Donny’s family committed to fully involving him in decisions

about his healthcare and to respect his right to say no. Donny therefore felt safer
in his ability to consent and refuse treatment.
Behavioural change Donny was able to have the allergy testing without
problems. Goals for therapy had been met and discharge was requested.
   

interweave.” These interweaves are usually very brief and can include a question
or the introduction of new information. However, with autistic clients interweaves
can be a source of confusion if they are not carefully considered. Language may be
understood literally, meaning that phrases commonly used in the EMDR process
such as “go with that” may not make sense to the client (who might think, “Go
where? Why do I need to go anywhere?”). Clearer alternatives can be used.
Donny did not understand what was meant by “float back,” (a term he associated
with swimming) so the therapist asked “Does the way you feel now remind you of
times in the past?” Donny then recalled a memory of being isolated in the head
teacher’s office. The therapist told him to notice that and continued with the BLS.
Despite what looked like effective processing, Donny’s progress was unusual.
He rated his distress as low (0.5/​10), but continued to say that he did not feel
safe when he thought about that memory. When asked why this was, he said that
he could not feel safe when he thought about the allergy clinic, since he actually
wasn’t safe. His reasoning was that when he went outside, people shouted at him
in the street (because his appearance and dress was unusual), making him feel
unsafe. His thinking style made it hard for him to distinguish between how he felt
now, and how he felt in relation to the memory.
The therapist suspected his beliefs about other people were rooted in other
early experiences which he was not linking to spontaneously during processing.
They spent a session talking about his childhood. The therapist asked specific
questions about Donny’s feelings as a child based on his history. Donny talked
about a bad memory from secondary school. Another boy had become angry and
thrown a desk, narrowly missing Donny’s head. Donny was expected to continue
to sit next to this boy in class even though he was scared. Donny had felt that he
didn’t matter and that he was powerless. The therapist felt that Donny’s feelings
of powerlessness could be related to his feeling unsafe in the present day. She
suggested to Donny that part of his brain might have “got stuck” on feeling pow-
erless when he was at school, and that the part hadn’t updated even though things
had changed. She used the metaphor of one person getting stuck on a puzzle in
an escape room, and continuing to work on it even though the time was up and
the game over.
The therapist took a more proactive role in the processing than would usually
be the case. In particular, she provided more scaffolding to help Donny connect
with adaptive memory networks. She spent a session talking about the links be-
tween present-​day beliefs and past experiences. She used interweaves to link to
the past and was more directive and less socratic that usual.
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EMDR Therapy203

Donny’s difficulty in shifting to more adaptive cognitions with this memory

then led the therapist to try a narrative technique. A short story describing diffi-
cult events in his life (using EMDR story-​telling techniques; Logie et al., 2020) was
written. This story included all elements of the EMDR protocol, including an
adaptive ending. Donny listened to the story while tracking eye movements. The
story ended with the central character feeling safer in the knowledge that he could
make choices and that the people around him would listen.
Donny engaged well with the story. For the first time he spontaneously
expressed some adaptive thoughts, such as “I can choose what I do now, it was
different when I was young” and “I am safe now, they can’t make me do things.”
Further sessions were planned after a holiday. However, following the break an
email from Donny’s mother arrived. Donny had completed the allergy testing,
thanked the therapist for her help, and decided that further sessions were not re-
quired. A closure session was offered but Donny did not feel it was necessary. An
abrupt or unplanned ending can, in our experience, be a feature of working with
some autistic people. This is perhaps due to honesty about their preference to stop
once their goals have been achieved, when others might feel a social pressure to
continue.

CONCLUSIO N

This case study illustrates how flexible EMDR therapists need to be when working
with autistic individuals, and how an apparently simple phobia presentation may
be linked with earlier events. For Donny, the experience of growing up autistic
and an intellectual disability had shaped the way he felt about the world.
Donny’s phobia was important to him because it enabled him to say no, and he
had had experiences in the past where his voice was ignored. It was necessary to
get agreement from everyone involved in Donny’s life that that a resolved phobia
would not be used as a reason to pressure him to submit to testing. Donny ended
EMDR therapy feeling that he had more power in the present than he had had in
the past. He used this power to end the therapy on his terms.
Donny’s case illustrates the importance of seeing an individual in context, par-
ticularly those who may have limited autonomy. It is important that the therapist
does not take on the agenda of the client’s family or support team without asking
what the client individually wants. EMDR should not be used as a way to make
people’s behavior more convenient to others when their behavior might have an
important function.

SUMMARY

EMDR is a promising therapy for autistic people. Access to EMDR therapy may
be an issue due to a tendency by services to see anxiety and challenging beha-
vior as autistic traits, rather than reactions to adverse experiences. To use EMDR
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204 P sychological T herapies for A dults W ith A utism

effectively, we need to widen our perspective on trauma, focusing on how people

experience the events of their lives, and then adapt the protocol as necessary to
enable them to process. Formulation is essential, and the therapist will need be
ready to adapt to each person’s individual needs as they go along.

REFERENCES

Barol, B. I., & Seubert, A. (2010). Stepping stones: EMDR treatment of individuals with
intellectual and developmental disabilities and challenging behavior. Journal of
EMDR Practice and Research, 4(4), 156–​169.
Caspi, A., Houts, R. M., Belsky, D. W., Goldman-​Mellor, S. J., Harrington, H., Israel, S.,
Meier, M. H., Ramrakha, S., Shalev, I., Poulton, R., & Moffitt, T. E. (2014). The p
factor: One general psychopathology factor in the structure of psychiatric disorders?
Clinical Psychological Science, 2(2), 119–​137.
Chen, L., Zhang, G., Hu, M., & Liang, X. (2015). Eye movement desensitization and
reprocessing versus cognitive-​behavioral therapy for adult posttraumatic stress dis-
order: Systematic review and meta-​analysis. Journal of Nervous and Mental Disease,
203(6), 443–​451.
Hengartner, M. P., & Lehmann, S. N. (2017). Why psychiatric research must abandon
traditional diagnostic classification and adopt a fully dimensional scope: Two
solutions to a persistent problem. Frontiers in Psychiatry, 8, 101.
Insel, T., Cuthbert, B., Garvey, M., Heinssen, R., Pine, D. S., Quinn, K., & Wang, P.
(2010). Research domain criteria (RDoC): Toward a new classification framework
for research on mental disorders. American Journal of Psychiatry, 167(7), 748–​751.
Kerns, C. M., Newschaffer, C. J., & Berkowitz, S. J. (2015). Traumatic childhood events
and autism spectrum disorder. Journal of Autism and Developmental Disorders, 45,
3475–​3486.
Khan, A. M., Dar, S., Ahmed, R., Bachu, R., Adnan, M., & Kotapati, V. P. (2018).
Cognitive behavioral therapy versus eye movement desensitization and reprocessing
in patients with post-​traumatic stress disorder: Systematic review and meta-​analysis
of randomized clinical trials. Cureus, 10(9), e3250.
Kosatka, D., & Ona, C. (2014). Eye Movement Desensitization and Reprocessing in
a Patient with Asperger’s Disorder: Case Report. Journal of EMDR Practice and
Research, 8(1).
Livingston, L., Shah, P., & Happe, F. (2019). Compensatory strategies below the
behavioural surface in autism. A qualitative study. Lancet Psychiatry, 6, 766–​777.
Leuning, E. (2020). The efficacy of EMDR in youngsters with autism (EYE-​catcher) [Paper
presentation]. EMDR Congress, The Netherlands.
Logie, R., Bowers, M., Dent, A., Elliott, J., O’Connor, M & Russell, A. (2020). A guide to
the storytelling (narrative) approach to EMDR therapy. Trauma Aid UK.
Morris-​Smith, J., & Silvestre, M. (2014). Autistic spectrum disorders. In EMDR for the next
generation: Healing children and families. Academic Publishing International Ltd.
Novo Navarro P., Landin-​Romero, R., Guardiola-​Wanden-​Berghe, R., Moreno-​Alcázar,
A., Valiente-​Gómez, A., Lupo, W., García, F., Fernández, I., Pérez, V., & Amann, B.
205

EMDR Therapy205

L. (2018). 25 years of eye movement desensitization and reprocessing (EMDR): The

EMDR therapy protocol, hypotheses of its mechanism of action and a systematic
review of its efficacy in the treatment of post-​traumatic stress disorder. Rev Psiquiatr
Salud Ment (Engl. Ed.), 11(2), 101–​114.
Poe, C. A. (2019). How to be autistic. Myriad Editions.
Propper, R., & Christman, S. (2008). Interhemispheric Interaction and Saccadic
Horizontal Eye Movements, Implications for Episodic Memory, EMDR, and PTSD.
Journal of EMDR Practice and Research, 2(4).
Ratcliffe A. (2020). Our autistic lives: Personal accounts from autistic adults around the
world aged 20–​70+​. Jessica Kingsley Publishers
Rowe, A. (2013). The girl with the curly hair: Asperger’s and Me. Lonely Mind Books.
Rodenburg, R., Benjamin, A., de Roos, C., Meijer, A. M., & Stams, G. J. (2009). Efficacy
of EMDR in children: a meta-​analysis. Clinical Psychology Review, 29(7), 599–​606.
Shapiro, F. (1989). Eye movement desensitization. Journal of Behavior Therapy and
Experimental Psychiatry, 20, 211–​217.
Shapiro, F. (2007). EMDR, adaptive information processing, and case conceptualization.
Journal of EMDR Practice and Research, 1, 68–​87.
Stickgold, R. (2002). EMDR: A putative neurobiological mechanism of action. Journal of
Clinical Psychology, 58, 61–​75.
Solomon, R. M., & Shapiro, F. (2008). EMDR and the adaptive information processing
model: Potential mechanisms of change. Journal of EMDR Practice and Research,
2(4), 315–​325. https://​doi.org/​10.1891/​1933-​3196.2.4.315
Taylor, J. L., & Gotham, K. O. (2016). Cumulative life events, traumatic experiences, and
psychiatric symptomatology in transition-​aged youth with autism spectrum dis-
order. Journal of Developmental Disorders, 8, 28.
Valiente-​Gomes, A., Moreno-​Alcazar, A., Treen, D., Cedron, C., Colom, F, Perez, V., &
Amann, B. L. (2017). EMDR beyond PTSD: A systematic literature review. Frontiers
in Psychology, 8, 1668.
Van den Berg, D. P., de Bont, P. A., van der Vleugel, B. M., de Roos, C., de Jongh, A.,
Van Minnen, A., & van der Gaag, M. (2015). Prolonged exposure vs eye movement
desensitization and reprocessing vs waiting list for posttraumatic stress disorder in
patients with a psychotic disorder a randomized clinical trial. JAMA Psychiatry, 2,
259–​267.
Van den Hout, M. A., & Engelhard, I. M. (2012). How does EMDR work? Journal of
Experimental Psychopathology, 724–​738.
Van den Hout, M. A, Bartelski, N., & Engelhard, I. M. (2013). On EMDR: Eye movements
during retrieval reduce subjective vividness and objective memory accessibility
during future recall, Cognition and Emotion, 27(1), 177–​183.
Varese, F., Smeets, F., Drukker, M., Lieverse, R., Lataster, T., Viechtbauer, W., Read, J.,
van Os, J., & Bentall, R. P. (2012). Childhood adversities increase the risk of psy-
chosis: A meta-​analysis of patient-​control, prospective-​and cross-​sectional cohort
studies. Schizophrenia Bulletin, 38(4), 661–​671.
Williams, D. (1998). Nobody nowhere: The remarkable autobiography of an autistic girl.
Jessica Kingsley Publishers Ltd.
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16

Group-​Based Interventions
PETER E. LANGDON, ADAM ROBERTSON, AND
THECLA FELLAS ■

KEY CONSIDERATIONS

• Fear of stigma and discrimination may lead some individuals to avoid

taking part in groups.
• Strategies to promote group cohesion are likely to lead to better
outcomes from group work.
• Specific adaptations are required for autistic adults when taking part in
group work. This can include adaptations to the physical environment,
the structure and routine of groups, and the pace and style of
communication. Further adaptations are needed to the content of the
group, depending upon its purpose. For example, if you are running an
anxiety-​management group, you may need to provide further teaching
about emotions, autism, and mental health.
• Collaboratively running groups with autistic adults may help overcome
some of the barriers faced when accessing groups by increasing a sense
of belonging and improving group cohesion.

GROUP-​B ASED INTER VENTIONS FOR AUTISTIC ADULTS

Group-​based psychological therapies and interventions have been shown to

be effective for a range of mental health problems such as depression (Huntley
et al., 2012; McDermut et al., 2001), symptoms of psychosis (Burlingame et al.,
2020), insomnia (Koffel et al., 2015), anxiety (Barkowski et al., 2020), including
social anxiety (Barkowski et al., 2016), and skills teaching, such as social skills
teaching with those who have psychosis (Pfammatter et al., 2006). While this
evidence is positive, there is also some evidence that individually delivered psy-
chological therapy, relative to group-​based approaches, may be associated with
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Group-Based Interventions207

more positive outcomes immediately after treatment, and while the dropout rate
tends to be lower within individual treatment relative to group-​based treatment
(Cuijpers et al., 2008), some of the treatment benefits associated with individual
therapy may lessen over time relative to group-​based therapy (Cuijpers et al.,
2008; Huntley et al., 2012). Others have suggested that individually delivered
psychological therapies may be associated with larger effect sizes for some with
developmental disabilities, and specifically adults with intellectual disabilities
(Vereenooghe & Langdon, 2013). There are several challenges associated with
offering group-​based psychological therapies, especially considering tentative
evidence to suggest that in some circumstances individual therapy may be pref-
erential, and many of these challenges are markedly relevant to autistic people.

THE CHALLENGES ASSOCIATED WITH GROUP-​B ASED

PSYCHOLOGICAL THERAPY

Strauss, Spangenberg, Brähler, and Bormann (2015), drawing upon ideas that
group-​based interventions may be unpopular and avoided by those seeking help
for mental health problems because of issues associated with disclosure, uneasi-
ness, and anxiety (Hahn, 2009), surveyed a large sample of adults in an attempt
to understand factors that impact upon willingness to engage in group psy-
chotherapy. They reported that women had more positive attitudes and greater
knowledge toward group psychotherapy relative to men. Further, while there
were some positive attitudes toward group psychotherapy, some reported anx-
iety, and concerns about rejection within groups, with it being noted that those
reporting positive experiences were those who had more experience of group psy-
chotherapy. They noted that those who preferred groups tended to have fewer
difficulties with anxiety, depression, and emotional burnout, which may lead to an
assumption that groups may not be the most preferential method for those with
more severe mental health difficulties.
Related to this, an important construct that is relevant to our understanding of
the utilization of group psychotherapy is stigma. This can act as a substantial bar-
rier to seeking help for mental health problems, as individuals avoid seeking help
due to fear of being labelled in a pejorative manner. Autistic people experience
stigma, and although there is some evidence to suggest that self-​stigma rates may
be lower for those with autism, stigmatizing societal conceptualizations of autism
continue and may affect mental health, including the mental health of families
and caregivers (Bachmann et al., 2019; Botha et al., 2020; Dubreucq et al., 2020;
Papadopoulos et al., 2019). Corrigan (2004) argued that one of the reasons that
people do not seek help for their mental health problems is an attempt to hide their
problems from others because of stigma and discrimination, as behavior seen as
unusual is judged negatively. Individuals seek to avoid being portrayed as part of
a group that is stereotyped to avoid negative emotional reactions and judgments
from others, and consequently they avoid seeking help that may assist them in
recovery. Such attitudes, stigma, and discrimination can be internalized and have
208

208 P sychological T herapies for A dults W ith A utism

a negative impact upon an individual’s view of themselves, exacerbating their dis-

tress, increasing their avoidance of help, and increasing their belief that they are
low-​value individuals, often provoking shame. Corrigan (2004) conceptualized
stigma as a substantial public health concern.
Within group-​based psychotherapy, individuals may avoid taking part be-
cause of stigma and associated fears that they may be judged negatively by other
participants or their communities. Individuals may avoid disclosure, experience
anxiety, fear rejection, and express concerns that other group members may dis-
close their personal information outside of the group. Vogel, Wade, and Hackler
(2007) demonstrated that public stigma about mental health predicted self-​
stigma, which had a negative impact upon attitudes toward counseling. Both self-​
stigma and attitudes about counseling mediated the relationship between wider
stigma and help seeking.
Nevertheless, group-​based psychotherapies are often construed as more cost-​
effective due to a reduction in therapist costs, but the evidence for this is mixed
(Tucker & Oei, 2007). There is evidence that internet-​delivered therapy is more
cost-​effective than group-​based approaches for social anxiety disorder (Hedman
et al., 2011), which has been demonstrated in a further study where a range of in-
dividually delivered cognitive behavior therapies (CBT) was shown to be the most
cost effective (Mavranezouli et al., 2015). Group-​based psychotherapies are often
seen as offering an opportunity for participants to develop a sense of belonging
and relating to a group of others with shared experiences, allowing for additional
opportunities to learn and feel connected.
Burlingame, McClendon, and Yang (2018) demonstrated that group cohesion
within group psychotherapy accounts for positive treatment outcome across a
range of studies. They discussed some of the challenges associated with defining
group cohesion, which often includes reference to acceptance, interpersonal
factors, well-​being, attendance, attrition, the use of nonverbal communication,
and engagement. More broadly, it refers to the quality of the relationships be-
tween therapists and group members and the relationships between group
members with reference to concepts such as warmth, genuineness, and emotional
bond. Burlingame et al. (2018) reported that participant sex, age, or diagnosis
did not explain the relationship between cohesion and treatment outcome within
groups, while an interpersonal orientation among therapists did, and to a lesser
degree this was the case for therapists who adopted another orientation such as
psychodynamic or cognitive-​behavioral. A positive relationship between cohe-
sion and treatment outcome was also seen within studies where increased focus
was given to enhancing cohesion within sessions. Further, they also demonstrated
that groups made up of volunteers or those that were task-​focused (i.e., problem
solving, goal focused, and not psychological therapy) tended to have a stronger
positive relationship between cohesion and outcome relative to psychotherapy and
support groups. The relationship was also stronger for groups where there was a
focus upon interaction within the group and the group comprised those with sim-
ilar diagnoses, while an increasing number of sessions was also associated with
a stronger relationship. Specifically, those groups with 20 or more sessions fared
209

Group-Based Interventions209

better; the relationship decreased as the number of sessions decreased. Finally,

they found that group size moderated the relationship between cohesion and
positive outcomes; specifically, groups comprising five to nine participants had
the largest positive relationship between cohesion and treatment outcome, while
smaller and larger groups did not.

GROUP-​B ASED PSYCHOLOGICAL THERAPY

FOR ADULTS WITH AUTISM SPECTR UM DISORDER

Group-​based interventions for autistic adults have been commonplace within

many countries as clinicians, educators, and others attempt to help autistic people
who have mental health problems and associated challenges related to autism.
Autism is associated with difficulties with social communication and interac-
tion, as well as restricted and repetitive behaviors, and many have attempted to
help autistic people with social interaction through the provision of group-​based
interventions. Often, the premise, considering the intervention is delivered within
a group, is that it provides an opportunity for individuals to meet others, form
relationships, and practice social skills. There are other group-​based interventions
which focus more upon mental health, with anxiety being of particular interest,
as difficulties with anxiety are frequently experienced by autistic people (Lai et al.,
2019). Again, groups themselves have been conceptualized as a way of exposing
individuals to feared social situations, allowing for anxiety to be induced while
encouraging the development of skills through teaching and vicarious and direct
learning.
Many factors such as social functioning, skills, and motivation (Bellini, 2004,
2006; Factor et al., 2016; Kamp-​Becker et al., 2009); a lack of flexibility and an
insistence upon sameness (Black et al., 2017; Hollocks et al., 2014; Wallace et al.,
2016); sensory issues (Black et al., 2017; Uljarevic et al., 2016); and intolerance
of uncertainty (Vasa et al., 2018; Wigham et al., 2015) have direct implications
for the therapeutic process. Often, specific adaptations are needed for therapy or
group-​based interventions to promote inclusion considering the difficulties that
are faced by autistic people. This can include: (a) adapting the physical environ-
ment to minimize the impact of sensory issues, such as problems with lights,
temperature, and sound, and working with group members to help develop an
understanding of the role that sensory issues have in their experience of anx-
iety and avoidance; (b) adapting the structure and routine of the group to meet
the needs of autistic people by making sure it is clear and focused and sharing
agendas with group members in advance so that they know the topics that are
to be discussed and how the sessions will be run; and (c) adapting the pace and
communication used during the sessions to meet the needs of autistic people (e.g.,
avoiding the use of complex verbal and abstract information). This would also
include making sure that therapists, session leaders, and group members are well
versed in the idiosyncratic nature of speech that is used by some autistic people.
The inclusion of visual aids, role play, and technology can be helpful to encourage
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210 P sychological T herapies for A dults W ith A utism

engagement and skill acquisition. Therapist or group leaders may need to be more
direct in their communication with autistic people within group sessions to avoid
misunderstandings. Further, some focus will be needed, considering the nature
of the group intervention, upon teaching about emotions, autism, and mental
health. Group members may wish to share information about their interests with
others. There may be some group members who will readily wish to hear about
the interests of others, while other group members may find this challenging and
difficult. Scheduling time within groups to talk about interests can be helpful.
Depending upon the nature of the group and participants, it may be helpful to
include parents or carers who may be able to support individuals further outside
of sessions. If there are tasks to be completed outside of sessions, it is impor-
tant to be flexible and considerate about the nature of this work and the medium
used to help participants to understand and complete tasks. This could be pro-
viding information in audio or visual form, or where possible making use of tech-
nology such as mobile telephones and computers, as well as carers or supporters.
Computer-​based cognitive remediation therapy, which includes taking part in
both a social-​cognitive group and computer-​based training, has been shown to be
more effective than supportive therapy in improving attention, processing speed,
affective management, social cognition, and subsequent employment (Eack et al.,
2018). Further, therapists and group facilitators will need to consider the marked
heterogeneity among group members, which can impact upon the therapeutic
process and the group. For example, some individuals may prefer the room to
be warm, while others prefer a cool room, and this may lead to conflict. Some
participants may wish to talk only about circumscribed interests, while others
may need time to engage in sensory stimulation, or others may experience strong
emotional reactions and need time to process what is happening and manage
their emotion. There may be miscommunication within sessions, which may
lead to conflict. This can be related to language problems and difficulties with
understanding social communication, while for others, when using a manualized
intervention, they may feel that their individual needs are not being addressed
effectively and increased flexibility may be required at times. Many of the changes
that have been made to CBT when used with autistic people have been described
(Walters et al., 2016).
Recently, Adams and Young (2020) undertook a systematic review of studies
that described factors that promote or interfere with psychological treatment
for autistic people, synthesizing a helpful list of factors that have implications
for the provision of group-​based interventions for autistic people. Their findings
indicated that therapists or professionals who lack knowledge about autism,
interventions that are not tailored to meet the needs of autistic people, increasing
waiting lists, not understanding how to access interventions within the care
system, not meeting service criteria or being referred between services, difficulties
with communication that are likely related to autism, difficulties with scheduling
and finding time to take part, and finding it difficult to trust professionals, among
other reasons, were all likely barriers faced by autistic people when trying to ac-
cess psychological therapies. At the same time, they identified that consistency of
21

Group-Based Interventions211

service provision, including having the same therapist and regular sessions, were
helpful, as was the willingness of services to make adaptations to meet the needs
of autistic people. Together, these findings strongly support the argument that
services need to adapt their provision to meet the needs of autistic people, which
would include autistic-​tailored or specific mental health interventions.
There is evidence that group-​delivered social skill teaching for autistic youth is
helpful and effect sizes have been reported to be large based on self-​report meas-
ures, but small for parent-​or observer-​based ratings of outcome (Gates et al.,
2017). This is the reverse to what has been reported for CBT with autistic youth
and adults, where effect sizes based upon self-​report measures were small and
informant-​and therapist-​rated outcomes were associated with medium effect
sizes (Weston et al., 2016). There are similarities and differences between group-​
based interventions that aim to improve social skills and interaction and group-​
based CBT for autistic people. For example, many social skills programs involve
psychoeducation about social skills, emotions, nonverbal and verbal communi-
cation, and relationships, along with the inclusion of role play and specific tasks
in and outside of group sessions (Ashman et al., 2017), where there is a focus
upon tasks and teaching, with some programs also making use of video modeling.
Other groups focused upon social skills may also incorporate aspects of CBT, for
example teaching about cognitive mediation, how to challenge unhelpful ways of
thinking, and the inclusion of some behavioral interventions (Spain et al., 2017).
Social skills programs that do and do not explicitly include components of CBT
have been described elsewhere, including programs where parents are included
(Cappadocia & Weiss, 2011), and these interventions, associated outcome meas-
ures, and characteristics have been summarized (McMahon et al., 2013; Miller
et al., 2014). There have been some trials comparing group CBT and group rec-
reational activity where there was no difference in outcome, but attrition was
reported to be lower within group CBT, with autistic people who received CBT
rating well-​being as more increased (Hesselmark et al., 2014).

SOCIAL GROUPS

There has been an increase in self-​help groups or groups that have been devel-
oped, led, and run by autistic people for autistic people, sometimes with addi-
tional support from health and social care professionals. Many of these groups
are run within the charitable sector, and an example of such a group is one run by
Asperger East Anglia, a charity in the east of England. For many who make use of
the services offered by the charity, the only opportunity to meet others socially is
within these social groups. These flagship groups tend to be popular and attend-
ance is frequently high. At the moment, there are over 50 members registered to
take part. The charity has also experienced an increase in the number of autistic
adults seeking social support due to increased feelings of loneliness and isolation,
which is thought to be related to the COVID-​19 pandemic.
21

212 P sychological T herapies for A dults W ith A utism

Prior to the COVID-​19 pandemic and the associated restrictions, the so-
cial groups met in person every 2 weeks for 2 hours on the same day and at the
same time. Each group was specifically organized around a planned activity, and
decisions about the activities were made by the people attending the group. Many
of the planned activities had a fun and light-​hearted theme that aimed to en-
courage and promote the sharing of experiences, increase social communication,
and allow members to practice and develop their social skills. Charity-​employed
staff helped to organize and assist group members to deliver the chosen activities,
which included quiz and bingo nights, talent contests, board games, and evenings
where they talked about and shared special interests. A strong focus within the
groups was the development of a culture that is both supportive and nonjudg-
mental, promoting inclusion, reducing stigma, and providing an opportunity for
what is hoped to be a positive experience for members.
The most popular organized activities included those that focused heavily
upon promoting community inclusion. These included going to the pub, bowling,
trampolining, having a meal in a restaurant, attending the theatre, going on bus
trip outings, and boat trips on the picturesque and rather pleasant Norfolk broads.
The Norfolk broads, also known as the The Broads National Park in England,
contains interconnected rivers and lakes that are used for boating. For many,
engagement in these activities would not have been possible outside of the so-
cial groups. The inclusion that develops within both groups and the community
through group participation is of marked value to members. They form and de-
velop relationships with likeminded people who share similar interests and have
encountered similar problems. Through the groups, many find acceptance and
peer support, which can lead to a reduction in anxiety, and an increase in en-
gagement within local communities through the participation of activities that
are rewarding. It is important to mention that the global pandemic has led to
these groups being delivered online using videoconferencing software. Staff have
noted that this change has not led to a reduction in attendance and the groups
have continued to provide a way for many autistic people to connect and share
their experiences, increasing opportunities to feel valued and to experience social
inclusion.
Autistic adults have said that these groups bring individuals together to share
experiences and provide support to one another. The groups are ability focused,
taking in the needs of everyone into account, rather than focusing upon disability.
Group members have said that the groups allow people to socialize, and this is
important for people who find socializing difficult. At the same time, some have
said that being part of a group made up of autistic people has meant that many
do not worry about having to change their behavior by attempting to make use of
eye contact or appropriate body language, as they are surrounded by neurodiverse
people. Together, within the group, there is a sense of equality and disability sol-
idarity; individuals come together to lament that they are perceived as inferior
to others by some neurotypical individuals. Some have commented that they
have a variety of skills to offer an employer and wish to have paid employment,
and the group has helped them to realize this and increase their confidence. One
213

Group-Based Interventions213

individual has said that being part of the group has helped them to escape the
“rat race” of the employment market and to appreciate their employment and
focus less on materialism. They commented that they have come to learn that real
friends judge you on your character. On the negative side, some have commented
that the social groups lack diversity, there are fewer women, and not many people
from Black, Asian, and minority ethnic communities attend. Sometimes members
have made comments that have offended others, which have had to be managed.
Overall, these groups provide an excellent opportunity for autistic adults to
learn new skills while promoting social inclusion. The theory underpinning these
groups, with a focus upon engagement in activities that are rewarding while also
providing an opportunity to practice and develop social skills, is similar to that
underpinning behavioral activation, a well-​established psychological therapy for
depression (Kanter et al., 2010; Veale, 2018). For many autistic people, various
aspects of daily living may become associated with negative emotions, leading to
avoidance and the development of aversive control. Avoidance of activities may be
more likely to lead to a cessation of aversive feelings associated with these activ-
ities, otherwise known as negative reinforcement, and a reduced probability that
an individual will encounter positive reinforcers. At the same time, and impor-
tant for autistic people, they may have a restricted or narrowed range of activities
that tend to be associated with positive reinforcement, and they may have some
difficulties with eliciting positive reinforcement. For example, they may experi-
ence less enjoyment from some types of social interaction. However, engagement
in activities may restrict further, as avoidance increases, which increases the risk
of developing mental health problems, including depression. This can become a
vicious cycle of avoidance and increasing restriction of activities, and in turn this
avoidance maintains and increases their experiences of low mood and/​or anx-
iety. The positive reinforcement strength and quality previously associated with
activities may be reduced. Aversive control can develop where activities that were
associated with positive reinforcement are avoided as they are perceived to be
aversive (Kaiser et al., 2016). There is some promising evidence that guided self-​
help, adapted for use with autistic adults and based upon behavioral activation,
is a useful treatment for low mood and depression among autistic adults (Russell
et al., 2019).
The social groups that are run by Asperger East Anglia encourage adults to
work together and collaboratively choose which activities they which to engage
in, and together they work effectively to take part in these activities; this engage-
ment and the completion of the activities are likely associated with positive rein-
forcement, and the peer-​related support that is integral to these groups is likely
to help encourage participation. As the activities allow for the development of
an increasing behavioral repertoire, a previously established cycle of avoidance
because of aversive feelings is disrupted, allowing individuals to experience pos-
itive reinforcement, which will have positive effects upon their mental health. At
the same time, as these groups are run collaboratively with autistic people, some
of the barriers to taking part in group-​based interventions may be reduced. The
groups are made up of volunteers, and the development of a sense of feeling part
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214 P sychological T herapies for A dults W ith A utism

of community, the development of friendships and bonds, a reduction in hiding

problems from others because of stigma and discrimination or concerns that
your behavior may be judged negatively, the inclusion of individuals with the
same diagnosis, a focus upon interaction, and the scheduling of task-​focused
sessions are likely to promote positive outcomes though the development of
stronger group cohesion (Burlingame et al., 2020). However, the outcomes from
these groups have not been formally examined, and while there is evidence to
suggest that mutual-​help groups are helpful for mental health problems, this lit-
erature has not focused upon autistic adults (Pistrang et al., 2008). Investigation
is needed into the potential beneficial impact of self-​help social groups for au-
tistic people.

GROUP-​B ASED PSYCHOLOGICAL THERAPIES

On the other hand, there are group-​based psychological therapies for autistic
adults where the focus is upon attempting to treat mental illness. This includes
groups developed and designed for the treatment of anxiety disorders, including
obsessive compulsive disorder. An example of such a group was developed for use
with autistic adults who have anxiety disorder and used during the PAsSA trial
(Doble et al., 2017; Langdon et al., 2013, 2016). The intervention is manualized
and is available from the authors.
The intervention involved 24 sessions, and the first three were individual ses-
sions designed to orient an individual to the group sessions, address any concerns,
share the timetable and agendas, begin socializing the individual into homework
tasks, and work toward building some initial rapport. The 21 group-​based ses-
sions and their aims are found in Table 16-​1.
Within a single-​blind randomized pilot trial of this intervention, the authors
demonstrated that the conversion rate was high and the attrition rate was low
for participants in the trial. Bearing in mind that this was a pilot trial that was
not powered to test the clinical efficacy of the intervention, both those who re-
ceived the intervention and those within the waiting list improved over time and
there was no difference between the two arms in the trial at endpoint. A sup-
plementary analysis using data of only those who attended at least 50% of the
treatment sessions was suggestive of an improved treatment response (Langdon
et al., 2016).
Notably, participants were interviewed about their experiences taking part
in group-​based psychological therapy for anxiety. Nearly 60% of participants
said that they now knew how to manage anxiety following treatment, and just
over half agreed that their anxiety had decreased. Almost 40% agreed that the
session time was too short, and they wanted longer and more sessions. Nearly
80% reported that hearing other participants talk about their experiences was
helpful, and nearly 80% felt supported by other group members. Seventy-​three
percent of participants said that they would recommend this therapy to others
and agreed that therapy had been helpful. Further interviews with participants
215

Table 16-​1 A Description of the Group-​Based Sessions Used to Treat Anxiety

Among Autistic Adults
Session Aims
Number
1 • Introductions—​getting to know one another
• Discuss the group rationale and format
• Devise the group rules
• Assign homework—​rating subjective units of distress
2 • Review of the previous session and homework
• Psychoeducation about autism and anxiety
• Assign homework—​rating subjective units of distress
3 • Review of the previous session and homework
• More psychoeducation about anxiety
• Assign homework—​rating subjective units of distress
4 • Review of the previous session and homework
• Psychoeducation about cognitive-​behavioral therapy and the
cognitive model—​learning to identify thoughts, feelings, and
behaviors
• Assign homework—​rating subjective units of distress and
identifying thoughts, feelings, and behaviors
5 • Review of the previous session and homework
• Cognitive mediation training
• Cognitive metallization training
• Assign homework—​rating subjective units of distress and
identifying thoughts, feelings, and behaviors
6 • Review of the previous session and homework
• Psychoeducation about obsessions, compulsions, and obsessive-​
compulsive disorder
• Assign homework—​rating subjective units of distress and
identifying thoughts, feelings, and behaviors
7 • Review of the previous session and homework
• Introduction to social skills training
• Social skills role play
• Assign homework—​rating subjective units of distress and
identifying thoughts, feelings, and behaviors
8 • Review of the previous session and homework
• Social skills role play
• Assign homework—​completion of social situations recording sheets
9 • Review of the previous session and homework
• Social skills role play
• Program recap
• Assign homework—​completion of social situations recording sheets
10 • Review of the previous session and homework
• Introduction to relaxation
• Practicing relaxation
• Assign homework—​to practice the relaxation techniques over and
record
(continued )
216

Table 16-1 Continued

Session Aims
Number
11 • Review of the previous session and homework
• Negative automatic thoughts, assumptions, and beliefs
• Anxiety and vicious cycles
• Assign homework—​to practice the relaxation techniques over and
record thoughts, assumptions, and beliefs
12 • Review of the previous session and homework
• Negative automatic thoughts and thinking errors
• Hypervigilance and selective attention
• Assign homework—​to practice the relaxation techniques over and
record thoughts, assumptions, and beliefs
13 • Review of the previous session and homework
• Cognitive restructuring
• Assign homework—​recording thoughts and considering possible,
alternative explanations
14 • Review of the previous session and homework
• More cognitive restructuring and positive beliefs
• Assign homework—​recording thoughts and considering possible,
alternative explanations
15 • Review of the previous session and homework
• Developing hierarchies of fears
• Assign homework—​recording thoughts and considering possible,
alternative explanations
16 • Review of the previous session and homework
• Systematic desensitization
• Assign homework—​practicing and recording systematic
desensitization
17 • Review of the previous session and homework
• Introducing behavioral experiments
• Planning behavioral experiments
• Assign homework—​practicing and recording systematic
desensitization
18 • Review of the previous session and homework
• Doing behavioral experiments as a group
• Assign homework—​practicing and recording systematic
desensitization
19 • Review of the previous session and homework
• Doing behavioral experiments as a group
• Assign homework—​practicing and recording systematic
desensitization
20 • Review of the previous session and homework
• Discussing and reviewing behavioral experiments
• Assign homework—​practicing and recording systematic
desensitization
21 • Review of the previous session and homework
• Bringing it all together and becoming your own therapist
217

Group-Based Interventions217

and the subsequent analysis indicated that participants who volunteered to

take part in the trial did so because they wanted help for their mental health
problems and recognized that anxiety was causing them problems. They
described a series of positive experiences about taking part in therapy which in-
cluded interacting with others with shared or similar experiences and learning
that others have had similar problems. Some talked about how being in a group
helped them to “open up” and share, while others commented about the value
of learning new skills and the positive impacts the group had upon their lives.
There were some important negative experiences shared with the research
team, which included the sessions being too short because they needed longer
to “warm up.” Others talked about how some participants would talk too much
about irrelevant issues, and this tended to be discussions about circumscribed
interests, meaning that the therapists needed to sometimes work harder to re-
focus the group. Some individuals did find the experience of taking part in
group therapy challenging and reflected that it was a negative experience for
them (Langdon et al., 2016).
Finally, the participants made a series of suggestions for how group-​based
therapy for autistic adults could be improved. These suggestions included an
increased focus upon preparatory work for some, especially those who found
group work difficult. There was also a suggestion that a combination of indi-
vidual and group-​based interventions would be helpful as this would allow for
individuals to focus more upon their problems with a therapist while working to
help support others within the group-​based sessions. Most notably, participants
communicated that they wanted longer sessions to allow more in-​depth work,
and the inclusion of technology to help promote learning and the comple-
tion of homework tasks was thought likely valuable. Finally, they reported that
challenges associated with using public transport, parking, the timings of some
groups, and things like poor heating was an issue for them and required careful
future planning.

CONCLUSIO NS

Group-​based interventions for autistic people have tended to focus upon the
delivery of interventions for mental illness, social skills teaching, or a combina-
tion of the two. Autistic adults present with a variety of needs and groups need
to be adapted to promote inclusion and skill acquisition. These adaptations
should include a focus upon factors that promote group cohesion and involve-
ment while also ensuring the needs of autistic adults are effectively addressed.
There is evidence that social skills groups and interventions based upon CBT
are effective, but there has been little exploration of the value and effective-
ness of social groups run by autistic people for autistic people. Self-​help groups
have the potential to smash through barriers faced by autistic people when
attempting to access interventions and thus to promote effective community
inclusion.
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218 P sychological T herapies for A dults W ith A utism

REFERENCES

Adams, D., & Young, K. (2020). A systematic review of the perceived barriers and
facilitators to accessing psychological treatment for mental health problems in
individuals on the autism spectrum. Review Journal of Autism and Developmental
Disorders, 1–18.
Ashman, R., Banks, K., Philip, R. C. M., Walley, R., & Stanfield, A. C. (2017). A pilot
randomised controlled trial of a group based social skills intervention for adults
with autism spectrum disorder. Research in Autism Spectrum Disorders, 43–​44,
67–​75.
Bachmann, C. J., Hofer, J., Kamp-​Becker, I., Kupper, C., Poustka, L., Roepke, S., Roessner,
V., Stroth, S., Wolff, N., & Hoffmann, F. (2019). Internalised stigma in adults with
autism: A German multi-​center survey. Psychiatry Research, 276, 94–​99.
Barkowski, S., Schwartze, D., Strauss, B., Burlingame, G. M., Barth, J., & Rosendahl, J.
(2016). Efficacy of group psychotherapy for social anxiety disorder: A meta-​analysis
of randomized-​controlled trials. Journal of Anxiety Disorders, 39, 44–​64.
Barkowski, S., Schwartze, D., Strauss, B., Burlingame, G. M., & Rosendahl, J. (2020).
Efficacy of group psychotherapy for anxiety disorders: A systematic review and
meta-​analysis. Psychotherapy Research, 30(8), 965–​982.
Bellini, S. (2004). Social skill deficits and anxiety in high-​functioning adolescents with
autism spectrum disorders. Focus on Autism and Other Developmental Disabilities,
19(2), 78–​86.
Bellini, S. (2006). The development of social anxiety in adolescents with autism spectrum
disorders. Focus on Autism and Other Developmental Disabilities, 21(3), 138–​145.
Black, K. R., Stevenson, R. A., Segers, M., Ncube, B. L., Sun, S. Z., Philipp-​Muller, A.,
Bebko, J. M., Barense, M. D., & Ferber, S. (2017). Linking anxiety and insistence on
sameness in autistic children: The role of sensory hypersensitivity. Journal of Autism
and Developmental Disorders, 47(8), 2459–​2470.
Botha, M., Dibb, B., & Frost, D. M. (2020). “Autism is me”: An investigation of how au-
tistic individuals make sense of autism and stigma. Disability & Society, 1–​27.
Burlingame, G. M., McClendon, D. T., & Yang, C. (2018). Cohesion in group therapy: A
meta-​analysis. Psychotherapy (Chicago, Ill.), 55(4), 384–​398. doi:10.1037/​pst0000173
Burlingame, G. M., Svien, H., Hoppe, L., Hunt, I., & Rosendahl, J. (2020). Group
therapy for schizophrenia: A meta-​analysis. Psychotherapy (Chicago, Ill.), 57(2),
219–​236.
Cappadocia, M. C., & Weiss, J. A. (2011). Review of social skills training groups for
youth with Asperger syndrome and high functioning autism. Research in Autism
Spectrum Disorders, 5(1), 70–​78.
Corrigan, P. (2004). How stigma interferes with mental health care. American
Psychologist, 59(7), 614–​625.
Cuijpers, P., van Straten, A., & Warmerdam, L. (2008). Are individual and group
treatments equally effective in the treatment of depression in adults? A meta-​anal-
ysis. The European Journal of Psychiatry, 22(1), 38–​51.
219

Group-Based Interventions219

Doble, B., Langdon, P. E., Shepstone, L., Murphy, G. H., Fowler, D., Heavens, D., Malovic,
A., Russell, A., Rose, A., Mullineaux, L., & Wilson, E. C. F. (2017). Economic eval-
uation alongside a randomized controlled crossover trial of modified group cogni-
tive–​behavioral therapy for anxiety compared to treatment-​as-​usual in adults with
Asperger syndrome. MDM Policy & Practice, 2(2).
Dubreucq, J., Plasse, J., Gabayet, F., Faraldo, M., Blanc, O., Chereau, I., Cervello, S.,
Couhet, G., Demily, C., Guillard-​Bouhet, N., Gouache, B., Jaafari, N., Legrand, G.,
Legros-​Lafarge, E., Pommier, R., Quilès, C., Straub, D., Verdoux, H., Vignaga, F.,
Massoubre, C., . . . Franck, N. (2020). Self-​stigma in serious mental illness and au-
tism spectrum disorder: Results from the REHABase national psychiatric rehabili-
tation cohort. European Psychiatry, 63(1), e13.
Eack, S. M., Hogarty, S. S., Greenwald, D. P., Litschge, M. Y., Porton, S. A., Mazefsky, C.
A., & Minshew, N. J. (2018). Cognitive enhancement therapy for adult autism spec-
trum disorder: Results of an 18-​month randomized clinical trial. Autism Research,
11(3), 519–​530.
Factor, R. S., Condy, E. E., Farley, J. P., & Scarpa, A. (2016). Brief report: Insistence on
sameness, anxiety, and social motivation in children with autism spectrum disorder.
Journal of Autism and Developmental Disorders, 46(7), 2548–​2554.
Gates, J. A., Kang, E., & Lerner, M. D. (2017). Efficacy of group social skills interventions
for youth with autism spectrum disorder: A systematic review and meta-​analysis.
Clinical Psychology Review, 52, 164–​181.
Hahn, W. K. (2009). Ingenuity and uneasiness about group psychotherapy in university
counseling centers. International Journal of Group Psychotherapy, 59(4), 543–​552.
Hedman, E., Andersson, E., Ljotsson, B., Andersson, G., Ruck, C., & Lindefors, N.
(2011). Cost-​effectiveness of Internet-​based cognitive behavior therapy vs. cognitive
behavioral group therapy for social anxiety disorder: Results from a randomized
controlled trial. Behaviour Research and Therapy, 49(11), 729–​736.
Hesselmark, E., Plenty, S., & Bejerot, S. (2014). Group cognitive behavioural therapy and
group recreational activity for adults with autism spectrum disorders: A prelimi-
nary randomized controlled trial. Autism, 18(6), 672–​683.
Hollocks, M. J., Jones, C. R., Pickles, A., Baird, G., Happe, F., Charman, T., & Simonoff,
E. (2014). The association between social cognition and executive functioning and
symptoms of anxiety and depression in adolescents with autism spectrum disorders.
Autism Research, 7(2), 216–​228.
Huntley, A. L., Araya, R., & Salisbury, C. (2012). Group psychological therapies for de-
pression in the community: Systematic review and meta-​analysis. British Journal of
Psychiatry, 200(3), 184–​190.
Kaiser, R. H., Hubley, S., & Dimidjian, S. (2016). Behavioural activation theory. In
Adrian Wells & Peter Fisher (Eds.), Treating depression: MCT, CBT and third wave
therapies (pp. 221–​241). Wiley Blackwell.
Kamp-​Becker, I., Ghahreman, M., Smidt, J., & Remschmidt, H. (2009). Dimensional
structure of the autism phenotype: Relations between early development and cur-
rent presentation. Journal of Autism and Developmental Disorders, 39(4), 557–​571.
20

220 P sychological T herapies for A dults W ith A utism

Kanter, J. W., Manos, R. C., Bowe, W. M., Baruch, D. E., Busch, A. M., & Rusch, L. C.
(2010). What is behavioral activation? A review of the empirical literature. Clinical
Psychology Review, 30(6), 608–​620.
Koffel, E. A., Koffel, J. B., & Gehrman, P. R. (2015). A meta-​analysis of group cognitive
behavioral therapy for insomnia. Sleep Medicine Reviews, 19, 6–​16.
Lai, M.-​C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., Szatmari, P., & Ameis,
S. H. (2019). Prevalence of co-​occurring mental health diagnoses in the autism
population: a systematic review and meta-​analysis. The Lancet Psychiatry, 6(10),
819–​829.
Langdon, P. E., Murphy, G. H., Shepstone, L., Wilson, E. C. F., Fowler, D., Heavens,
D., Russell, A., Rose, A., Malovic, A., & Mullineaux, L. (2016). The people with
Asperger syndrome and anxiety disorders (PAsSA) trial: A pilot multi-​centre single
blind randomised trial of group cognitive behavioural therapy. British Journal of
Psychiatry Open, 2, 179–​186.
Langdon, P. E., Murphy, G. H., Wilson, E., Shepstone, L., Fowler, D., Heavens, D., Malovic,
A., & Russell, A. (2013). Asperger syndrome and anxiety disorders (PAsSA) treat-
ment trial: A study protocol of a pilot, multicentre, single-​blind, randomised cross-
over trial of group cognitive behavioural therapy. BMJ open, 3(7), e003449.
Mavranezouli, I., Mayo-​Wilson, E., Dias, S., Kew, K., Clark, D. M., Ades, A. E., & Pilling,
S. (2015). The cost effectiveness of psychological and pharmacological interventions
for social anxiety disorder: A model-​based economic analysis. PLOS ONE, 10(10),
Article e0140704.
McDermut, W., Miller, I. W., & Brown, R. A. (2001). The efficacy of group psychotherapy
for depression: A meta‐analysis and review of the empirical research. Clinical
Psychology: Science and Practice, 8(1), 98–​116.
McMahon, C. M., Lerner, M. D., & Britton, N. (2013). Group-​based social skills
interventions for adolescents with higher-​functioning autism spectrum disorder: A
review and looking to the future. Adolescent Health, Medicine, and Therapeutics, 4,
23–​28.
Miller, A., Vernon, T., Wu, V., & Russo, K. (2014). Social skill group interventions for
adolescents with autism spectrum disorders: A systematic review. Review Journal of
Autism and Developmental Disorders, 1(4), 254–​265.
Papadopoulos, C., Lodder, A., Constantinou, G., & Randhawa, G. (2019). Systematic
review of the relationship between autism stigma and informal caregiver mental
health. Journal of Autism and Developmental Disorders, 49(4), 1665–​1685.
Pfammatter, M., Junghan, U. M., & Brenner, H. D. (2006). Efficacy of psychological
therapy in schizophrenia: Conclusions from meta-​analyses. Schizophrenia Bulletin,
32 Suppl 1, S64–​80.
Pistrang, N., Barker, C., & Humphreys, K. (2008). Mutual help groups for mental
health problems: A review of effectiveness studies. American Journal of Community
Psychology, 42(1–​2), 110–​121.
Russell, A., Gaunt, D., Cooper, K., Horwood, J., Barton, S., Ensum, I., Ingham, B., Parr,
J., Metcalfe, C., Rai, D., Kessler, D., & Wiles, N. (2019). Guided self-​help for depres-
sion in autistic adults: The ADEPT feasibility RCT. Health Technology Assessment
(Winchester, England), 23(68), 1–​94.
21

Group-Based Interventions221

Spain, D., Blainey, S. H., & Vaillancourt, K. (2017). Group cognitive behaviour therapy
(CBT) for social interaction anxiety in adults with autism spectrum disorders
(ASD). Research in Autism Spectrum Disorders, 41–​42, 20–​30.
Strauss, B., Spangenberg, L., Brahler, E., & Bormann, B. (2015). Attitudes towards (psy-
chotherapy) groups: Results of a survey in a representative sample. International
Journal of Group Psychotherapy, 65(3), 410–​430.
Tucker, M., & Oei, T. P. S. (2007). Is group more cost effective than individual cogni-
tive behaviour therapy? The evidence is not solid yet. Behavioural and Cognitive
Psychotherapy, 35, 77–​92.
Uljarevic, M., Lane, A., Kelly, A., & Leekam, S. (2016). Sensory subtypes and anxiety in
older children and adolescents with autism spectrum disorder. Autism Research,
9(10), 1073–​1078.
Vasa, R. A., Kreiser, N. L., Keefer, A., Singh, V., & Mostofsky, S. H. (2018). Relationships
between autism spectrum disorder and intolerance of uncertainty. Autism Research,
11(4), 636–​644.
Veale, D. (2018). Behavioural activation for depression. Advances in Psychiatric
Treatment, 14(1), 29–​36.
Vereenooghe, L., & Langdon, P. E. (2013). Psychological therapies for people with intel-
lectual disabilities: A systematic review and meta-​analysis. Research in Developmental
Disabilities, 34, 4085–​4102.
Vogel, D. L., Shechtman, Z., & Wade, N. G. (2010). The role of public and self-​stigma in
predicting attitudes toward group counseling. The Counseling Psychologist, 38(7),
904–​922.
Vogel, D. L., Wade, N. G., & Hackler, A. H. (2007). Perceived public stigma and the will-
ingness to seek counseling: The mediating roles of self-​stigma and attitudes toward
counseling. Journal of Counseling Psychology, 54(1), 40–​50.
Wallace, G. L., Kenworthy, L., Pugliese, C. E., Popal, H. S., White, E. I., Brodsky, E., &
Martin, A. (2016). Real-​world executive functions in adults with autism spectrum
disorder: Profiles of impairment and associations with adaptive functioning and
co-​morbid anxiety and depression. Journal of Autism and Developmental Disorders,
46(3), 1071–​1083.
Walters, S., Loades, M., & Russell, A. (2016). A systematic review of effective modifications
to cognitive behavioural therapy for young people with autism spectrum disorders.
Review Journal of Autism and Developmental Disorders, 3(2), 137–​153.
Weston, L., Hodgekins, J., & Langdon, P. E. (2016). Effectiveness of cognitive behavioural
therapy with people who have autistic spectrum disorders: A systematic review and
meta-​analysis. Clinical Psychology Review, 49, 41–​54.
Wigham, S., Rodgers, J., South, M., McConachie, H., & Freeston, M. (2015). The inter-
play between sensory processing abnormalities, intolerance of uncertainty, anxiety
and restricted and repetitive behaviours in autism spectrum disorder. Journal of
Autism and Developmental Disorders, 45(4), 943–​952.
2

17

Offender-​Focused Interventions
DAVID MURPHY ■

KEY CONSIDERATIONS

• Regardless of whether features of autism are directly linked to their

offending, offenders with autism present with difficulties and needs that
can pose a challenge for mainstream forensic services.
• Offenders with autism can benefit from offence-​focused interventions,
yet the factors influencing engagement and outcome remain poorly
understood.
• Without appropriate adaptation and consideration of autism, any
offence-​focused intervention will likely be unsuccessful in terms of
engagement and outcomes.
• Offence-​focused interventions rarely operate in isolation and can
be influenced by all those who work with individuals, necessitating
organizational awareness of autism.

OVER VIEW

While individuals with autism are no more likely to engage in law-​breaking

behaviors than those without autism (and may actually more likely be victims
of crime; (King & Murphy, 2014), it is generally accepted that the combination
of an individual’s specific difficulties (often directly related to their autism, such
as a tendency toward literal thinking, focusing on specific details at the expense
of appreciating the wider context, perspective-​taking difficulties, preoccupations,
sensory sensitivities, and emotional regulation [ER] difficulties) in particular
environmental circumstances may increase their vulnerability toward engaging
in some form of law-​breaking behavior and subsequent involvement with the
criminal justice system (CJS). Such circumstances typically involve high-​stress
situations involving a lack of structure to life, social isolation and alienation,
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transition periods, and being used by other more able peers. Law-​breaking beha-
vior may also take many forms such as interpersonal violence, pursuing deviant
preoccupations, arson, inappropriate sexual conduct and behavior, harassment
and stalking, or involvement with extremism ideology.
In terms of prevalence within the CJS, methodological differences between
studies (with many restricted to single settings and differences in how autism has
been screened or diagnosed) make it is difficult to ascertain an exact number of
individuals with autism within specific forensic services. However, the consensus
view is that individuals with autism are likely to be overrepresented in many se-
cure settings, including UK high-​secure psychiatric care, the most secure level of
psychiatric care where admission is determined by whether individuals represent
an immediate and grave risk to others (Murphy et al., 2017), and UK prisons
(Underwood et al., 2016); as well as prisons in the US (Fazio et al., 2012) and
Sweden (Billstedt et al., 2017). It is also suspected that such estimates are likely
to be an underestimate of the actual figure, especially considering atypical cases
(i.e., individuals who display some features of autism but who may not necessarily
fulfil all of the diagnostic criteria), as well as those who are likely to have autism
but who refuse to engage with diagnostic assessments.
Once within the CJS, individuals with autism also present with difficulties
and needs that pose a challenge to conventional services (Allely, 2015; Higgs
& Carter, 2015; Murphy, 2010b). Such challenges can be present at all stages of
CJS (Browning & Caulfield, 2011), including initial interviews with the police,
attending court and subsequent management in custodial settings, secure psychi-
atric environments, or in community services. Regardless of the relevance of an
individual’s autism to their offending, engaging offenders who have autism with
interventions that aim to reduce risks for future offending also present specific
challenges. There is also the high prevalence of co-​occurring conditions in this
population, such as other neurodevelopmental disorders (notably attention def-
icit/​hyperactivity disorder [ADHD], intellectual disabilities), psychiatric disorders
such as psychosis, personality disorders, and, for some, psychopathy. An initial
step in guiding an appropriate offence-​focused intervention is completing a risk
assessment with an individual (Murphy, 2019; Shine & Cooper, 2016). Indeed, a
good risk assessment should include a formulation of an individual’s autism, its
relevance to offending, and potential targets for intervention or management.

INDIVIDUAL, GROUP, AND ORGANIZATIONAL

OFFENCE-​FOCUSED INTER VENTIONS

Within the UK, regardless of whether the forensic setting is a prison, spe-
cialist autism unit, or generic forensic psychiatric setting, the management of
individuals with autism has been significantly influenced by growing professional
awareness and governmental legislation. For example, the Autism Act (2009),
followed by other pieces of legislation, including the Think Autism Strategy
(Department of Health, 2014), the Adult Autism Strategy: Statutory Guidance
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224 P sychological T herapies for A dults W ith A utism

(2015), and Transforming Care (2017) have placed autism on the agenda of most
institutions and established a duty to provide appropriate diagnostic assessments
and staff training. A review of neurodiversity in UK prisons (Criminal Justice
Joint Inspection, 2021) and the policy paper outlining a national strategy for au-
tistic children, young people and adults (Department of Health and Social Care,
2021) have also both highlighted the need to develop a ‘neurodiverse’ informed
model of care and to have made demonstrable progress in the assessment and
management of individuals with autism in UK prisons and the criminal justice
system. Although not specifically targeted just at the needs of individuals with
autism, the Equalities Act (2010) within the UK has also had some impact in
ensuring “reasonable adjustments” are made to make environments, procedures,
and opportunities more “autism friendly.” Internationally, similar legislation has
also had a significant influence on how individuals with autism are assessed and
managed, such as the Combating Autism Act (2006) in the US. The United Nations
Convention on the Rights of Persons with Disabilities (U.N. General Assembly,
2007) also serves a function in protecting the rights of offenders with autism.
In terms of promoting organization awareness of autism and complying with
these pieces of legislation, within high secure psychiatric care the author provides
general autism awareness training to all staff who have direct patient contact. In
addition to providing information on the current understanding of what autism
is, including the characteristic difficulties and features, the training introduces
the so-​called SPELL guidelines, which place emphasis on a Structured approach,
a Positive approach, Empathy, Low arousal, and Links with other professionals
(National Autistic Society, 2013). The aim of the SPELL approach is to encourage
staff to work with an individual’s strengths and reduce the likelihood of problem
behaviors by making the immediate environment and any interactions more au-
tism friendly. Although the impact of such training on the management of patients
with autism remains to be evaluated, there is the general view that training is
valued and that it should be mandatory, as assessed via a staff survey (Murphy &
Broyd, 2019; Murphy & McMorrow, 2015). These findings are particularly rele-
vant in the context of the proposal by the UK government that all National Health
Service clinical staff should receive some form of compulsory autism awareness
training (Department of Health, 2019). This recommendation is also interesting
within forensic settings where the importance of having an awareness of autism
among staff is not a new idea. Over 20 years ago, Wing (1997) highlighted that the
crucial elements for appropriate care of individuals with Asperger’s syndrome in
forensic settings lie in carefully structuring the environment and daily program
and in training staff in the psychological strategies to be used. Wing also noted
that some, perhaps most, of those who commit violent or other serious offences
may require long-​term care and supervision in a secure environment, with the
emphasis “that in the right kind of environment, the individual may behave in
an exemplary way, but if he or she is moved to a setting that does not provide the
right type of program, the criminal behavior may very well reoccur” (p. 256). In
terms of a wider awareness of autism across the CJS, it is also noteworthy that
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Offender-Focused Interventions225

autism awareness training is now common among many police forces both in the
UK and internationally.
In terms of prison settings, experience assessing individuals with autism
suggests that while there has been an increased awareness of autism among many
staff, and several prisons have been accredited by the UK National Autistic Society
(e.g., Lewis et al., 2013), there remains considerable uncertainty with regard to
how best to therapeutically address an individual’s needs, with individuals them-
selves reporting limited opportunities to engage with rehabilitation programs
(Robertson & McGillivray, 2015). At the time of writing there are no accredited
group programs for any offending behavior available specifically for individuals
with autism detained in forensic settings. While some adapted versions of the sex
offender treatment programs designed for individuals with intellectual difficulties
(SOTSEC-​ID, 2010) have been developed, outcomes for individuals with autism
in these groups do not appear promising because they often function at a much
higher level compared to others and present with different needs (Haaven, 2006).
Indeed, some research also suggests that men with autism who have noncontact
sexual offending histories and have completed such groups may actually have
higher recidivism rates (Heaton & Murphy, 2013). Possible explanations for this
higher recidivism rate may be due to such offences having a higher rate regard-
less of the presence of autism, but also perhaps because of a failure to address
deviant preoccupations and the social difficulties present in some individuals
with autism. Participation in mainstream offender groups within prison settings
may also be problematic, where individuals with autism may experience sensory
overload and exclusion (Higgs & Carter, 2015). However, while within forensic
psychiatric settings it remains debatable as to whether it is harmful to include
individuals with autism in mainstream groups, there is an argument that some
individuals with autism benefit from participating in mixed groups by hearing
different points of view and listening to other individuals’ experiences. The qual-
itative reports by some individuals with autism seen by the author in a HSPC
setting suggest that mixed-​membership groups are useful. For example, dialec-
tical behavior therapy (DBT) devised by Linehan (1993) and applied to forensic
psychiatric care (Moulden et al., 2020) shows promise in that it aims to promote
positive coping and change unhelpful behaviors through recognizing the cogni-
tive and emotional triggers that increase stress. Although empirical research is
lacking, key factors that influence outcomes with such groups appear to include
facilitator awareness of the difficulties associated with having autism and facili-
tator sensitivity to making appropriate adjustments, as well as the sensitivity of
other group members to such difficulties.
Evidence for the effectiveness of individual psychological work addressing the
offending behaviors of individuals who have autism also remains to be explored in
any depth. Cognitive behavior therapy (CBT) and other psychological approaches
(such as mindfulness-​based approaches) that are adapted for any cognitive and
communication difficulties have been found to be useful interventions for adults
who have autism in nonforensic contexts (Spain et al., 2016), but there has been
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226 P sychological T herapies for A dults W ith A utism

limited exploration of how psychological therapies can address offence-​specific

behaviors in autism. In a systematic review, Melvin, Langdon, and Murphy (2017)
identified four quantitative studies and nine case studies describing interventions
and outcomes for offenders with autism. Among the studies identified, sexual
offending was the most common offence (58%), followed by interpersonal vio-
lence (19%), arson (15%), manslaughter (11%), theft (8%), and firearms and a
bomb hoax (4% each). No single therapeutic approach was followed between
studies and there were differences in how outcome was assessed. Some studies
also included individuals with co-​occurring intellectual difficulties and psy-
chiatric disorders. Unsurprisingly, it was concluded from this review that there
were too many significant differences between studies in terms of an individual’s
presenting difficulties, offending behaviors, and specific interventions used, to
prevent any generalization of findings.
Clinical experience with several individuals has found that if a CBT approach
is used to address risk or criminological issues among offenders with autism
(such as improving victim empathy and an appreciation of consequences), clear
realistic goals need to be identified and specific further adaptations need to be
made allowing for the presence of any cognitive, communication, sensory, and
ER difficulties, as well as for any comorbid psychiatric disorder (Murphy, 2010a).
For many individuals a “personalized” education plan about their autism can
also be helpful as a way of improving their understanding of past and current
difficulties. For example, one individual described being able to “outthink” his
autism as a result of being aware of what his difficulties had been in the past.
However, while many individuals with autism do respond to individual psycho-
logical interventions (such as developing general problem-​solving skills; working
on basic social inference skills; encouraging appropriate assertiveness; reducing
individual social anxieties; shifting preoccupations, obsessive thoughts, and neg-
ative ruminations; and developing perspective-​taking skills), it may be unreal-
istic to expect significant changes in cognitive style compared to other offenders
who do not have autism. Engagement with those individuals who present with
significant egocentricity, who take limited personal responsibility, and who re-
ject their diagnosis can be particularly problematic. For example, Hare (2013)
has suggested that a primary goal in CBT with autism should be not to focus on
cognitive changes, but more to concentrate on behavioral changes that increase
an individual’s ability to function in everyday life, while being aware of difficulties
in challenging dysfunctional cognitions and beliefs that may be present. As with
many individuals with autism, some specific therapeutic adaptations may also be
required with the pace of therapy, providing individuals with sufficient time to
process information and to work on “Asperger’s time” (Gaus, 2007, p. 73). Such
adaptations to processing information may be particularly prominent in fo-
rensic settings where comorbid psychosis can be an issue. For many offenders
with autism there is also a role for pharmacological interventions that can assist
with anxiety and comorbid neurodevelopmental (such as ADHD) or psychiatric
disorders, as well as with the experience of any auditory hallucinations or delu-
sional ideas linked to offending that may be present (Kelbrick & Radley 2013).
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Offender-Focused Interventions227

Other interventions within secure settings can include occupational therapy and
further education, which can have a positive impact on increasing social inclusion
and self-​esteem, as well as opportunities to learn new skills. The application of a
restorative justice approach with offenders who have autism in HSPC is also be-
ginning to be explored (Tapp et al., 2020).
Beyond detention, there remains a lack of research examining what difficulties
individuals with autism experience during the transition back to the community
from custodial settings. Leaving prison and returning back to the community can
be difficult for many individuals, but it may be particularly difficult for individuals
with autism who might experience particular issues dealing with change in rou-
tine and the reduced structure (Royal College of Psychiatry, 2006). Within the
UK, where prison to community services are available, it has been found that
accessing these for many individuals with autism is confusing and that success
depends on a coordinated multi-​agency approach including health, social care
and justice (Prison Reform Trust, 2018).

CASE STUDY

Robert, aged 30 years with a history of early neglect and physical abuse, was
admitted to HSPC due to concerns within medium-​secure care that he was at
risk of attempting to abscond and immediate threats of violence to nursing staff,
whom he perceived as abusing his rights. Robert’s original index offence (the
offence leading to his conviction and detainment in forensic services) was for
sending explosive devices to a probation officer whom he believed had wrongly
portrayed him as a pedophile (where the reality was that there was no evidence
to support the probation officer’s this view). Prior to his admission, Robert had
never been assessed for autism and had received a diagnosis of an antisocial
personality disorder and possible psychosis (based on assumed paranoid ideas
about probation services). A formulation of difficulties and multidisciplinary
“treatment” plan was devised following a detailed and extended assessment of
Robert’s presenting difficulties and history, including a comprehensive neuropsy-
chological assessment (focusing on identifying thinking style), an autism diag-
nostic assessment (following the observation of intolerance to noise and a need
for routines, predictability, and preoccupations), and a detailed risk assessment.
The formulation was based on the findings that Robert’s early experience of ne-
glect and physical abuse, in combination with his thinking style, associated with
having autism. Notably, his literal thinking, perspective-​taking difficulties, focus
on details, as well as his social isolation and low self-​esteem, led to his mistrust of
authority and his vulnerability toward making negative interpretations of others,
grudge bearing, and defensive/​aggressive reaction. Robert’s management plan in-
cluded individual psychoeducation exploring his experience and acceptance of
the autism diagnosis, as well as individual autism-​adapted CBT to address his
tendency to form negative interpretations of others’ actions and comments and to
react in a defensive way. A collaborative risk management plan was also devised,
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228 P sychological T herapies for A dults W ith A utism

including encouraging prosocial interests and opportunities to promote self-​es-

teem through further education and work activities. A psychiatric assessment and
management plan also led to the exclusion of a psychosis and the introduction of
a short-​term low-​dose mood stabilizer medication. The SPELL guidelines were
also encouraged to be followed by all staff involved in Robert’s management.
In terms of outcome, Robert was initially reluctant to accept the diagnosis of
autism and externalized responsibility for all perceived wrongdoings onto others.
However, with some initial motivational work, over several sessions it was pos-
sible to encourage Robert to acknowledge the diagnosis, to challenge his neg-
ative bias in thinking and consider alternative perspectives, and to view his
thinking style (literal with a tendency to focus on details) as an advantage in many
situations. More adaptive ways of challenging the perceived negative comments
of others were also developed, including a shared collaborative formulation of
understanding the risks for interpreting and acting on perceived wrongdoing
(linked with his early experiences of neglect and abuse), along with the devel-
opment of protective factors (such as improved self-​esteem through education,
positive relationships, social inclusion, and valued work activities).Working in
combination to address dysfunctional thinking patterns, to reframe negative
early experiences and grudge bearing, and to work toward positive goals, these
interventions led Robert to move back to medium-​secure care and eventually to
transfer back into community care. Of particular significance was the shift in the
formulation of Robert’s difficulties by those involved in his management, viewing
him in terms of autism and trauma informed rather than a personality disorder.

CONCLUSIONS AND FUTURE RESEARCH

The development and evaluation of offence-​focused interventions for individuals

with autism will continue to evolve. Although there are no “validated” treatment
programs for addressing the offending behavior of individuals with autism, clin-
ical experience suggests many offenders with autism can benefit from a range of
interventions. Indirect interventions in the form of staff and organization aware-
ness of autism—​how staff interact with and make reasonable adjustments for
someone with autism—​can also have a significant influence in addressing offence
behaviors and reducing future risk for re-​offending. The variation in therapeutic
engagement and outcomes following offence-​focused interventions should not
be surprising; while offenders with autism share the same diagnosis, every indi-
vidual presents with different life circumstances; profiles of functioning; age-​re-
lated factors (where CBT with a 18-​year-​old offender can be quite different from
a 48-​year-​old offender), including perhaps delayed or different patterns of brain
maturation (Ecker et al., 2015); and possible gender identity issues (George &
Stokes, 2018). Our understanding of how all these factors might influence indi-
vidual engagement and outcome following interventions remains poor. A similar
degree of uncertainty of influence is also present regarding therapist characteris-
tics and any “autism-​specific adaptions” to interventions.
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Offender-Focused Interventions229

A key target for future research on offender-​focused interventions for au-

tism should focus on attempting to understand the factors that influence an
individual’s capacity to engage with interventions, including matching specific
interventions to individual presentations and how best to define outcomes. For
example, individuals with good verbal abilities and capacity to considerer al-
ternative perspectives may engage well with CBT as well as mindfulness. Other
individuals with high levels of motivation and personal curiosity might also
benefit from psychoeducational approaches. While typologies of offenders with
autism have been suggested based on the presence or absence of psychosis and
psychopathy (e.g., Alexander et al., 2016) and which have been proposed would
guide interventions, these alone can potentially oversimplify presentations and
fail to appreciate the diversity within autism (notably within different aspects of
social and nonsocial cognition, social naivete, need for routine and predictability,
emotional regulation, and sensory sensitivities). The potential role of “severity”
of autism in determining capacity to benefit from interventions has also been
suggested (Melvin et al., 2017). However, this raises questions around what aspect
of autism is used to define severity (such as the specific features associated with
autism, or the overall general level of functioning or support required, however
this is defined), where any cut-​off of ability or dysfunction might be, and the influ-
ence of any co-​occurring neurodevelopmental and psychiatric difficulties. As with
many offenders, the role of past traumas in understanding presenting difficulties
may be particularly significant in autism, where some have suggested an associa-
tion between past traumas and an increased risk of violence (Im, 2016). Running
alongside an autism-​sensitive approach to offender management, a trauma-​in-
formed approach to care may also be required (Fuld, 2018).
Of particular importance with regard to determining an individual’s capacity
to engage and benefit from any intervention appears to be their cognitive style.
Clinical experience suggests that many individuals with autism who present with
more flexible thinking and relatively less egocentricity engage very well with
therapeutic interventions addressing a range of issues that are sensitive to their
autism. In contrast, individuals who present with significant social cognition
difficulties and extreme literal thinking, as well as perhaps a greater degree of
co-​occurring intellectual difficulties, struggle to benefit from “insight orientated”
psychological or occupational interventions (Murphy, 2010a) and require a more
environmental and behavioral approach directed by staff. Individuals with autism
and co-​occurring psychopathy can also be particularly difficult to engage with any
direct offence-​focused intervention. Regardless of what specific offence-​focused
interventions are followed, these do not operate in isolation and typically form
part of a coordinated multi-​agency and multiprofessional approach to individual
management. Indeed, the most economically and clinically effective method of
addressing the needs of offenders with autism remains the promotion of awareness
of autism among all those involved with their management. Although there is no
specific research evidence devoted to examining how organizational awareness of
autism specifically improves the outcomes of offenders with autism or the impact
on reducing recidivism, staff surveys of probation, prison, and secure psychiatric
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230 P sychological T herapies for A dults W ith A utism

care facilities consistently find most staff feel underskilled with regard to how they
work with individuals who have autism and that training is valued. Clearly any
service or intervention that is sensitive to, and makes reasonable adjustments for,
an individual’s autism is more likely to result in positive outcomes than those
that do not. It is also possible that having staff with autism-​sensitive qualities (in-
cluding autism knowledge and “empathy” toward an individual’s difficulties) is
particularly beneficial in encouraging positive outcomes (Worthington, 2016). In
terms of promoting positive outcomes for offenders with autism detained within
forensic psychiatric settings, it also remains to be established whether secure spe-
cialist autism services result in better “outcomes” for individuals than more ge-
neric secure units that aim to be autism sensitive. As has been suggested by one
study examining patient experiences in HSPC, some individuals with autism re-
port a preference to be around mixed patient groups rather than just those with
autism (Murphy & Mullens, 2017).
Of significance is the observation that most research exploring interventions
addressing the offending behavior of individuals with autism has been with men.
While this no doubt reflects the prevalence of offenders with autism, there is a
need to explore whether women with autism who enter the CJS have additional
vulnerabilities and needs that require different interventions (Ashworth et al.,
2020; Markham, 2019). Other offender subgroups including ethnic minorities may
also have specific needs that need to be considered during assessment and subse-
quent interventions. In terms of potential future offender-​focused interventions,
especially so in a post-​COVID-​19 world, the use of new technologies in therapies
and risk assessments such as computer simulation and virtual reality are likely
to play an increasingly important role (Benbouriche et al., 2014). This may be
especially so with the relatively easy accessibility and low cost now associated
with such technologies, as well as the potential to manipulate and replicate a wide
range of variables.

REFERENCES

Alexander, R., Langdon, P., Chester, V., Barnoux, M., Gunaratna, I., & Hoare, S. (2016).
Heterogeneity within autism spectrum disorder in forensic mental health: the intro-
duction of typologies. Advances in Autism, 2(4), 201–​209.
Allely, C. (2015). Autism spectrum disorders in the criminal justice system: Police
interviewing, the courtroom, and the prison environment. In Recent Advances in
Autism (pp. 1 –​13). SM Group.
Ashworth, S., Bamford, J., & Tully, R. (2020). The effectiveness of a CBT based inter-
vention for depression symptoms with a female forensic inpatient with cognitive
disability and autism. Journal of Forensic Psychiatry and Psychology, 31,(3), 432–​454.
Autism Act. (2009). Accessed at www.legislation.gov.uk/​ukpga/​2009/​15/​contents
Benbouriche, M., Nolet, K., Trottier, D., & Renaud, P. (2014, April 9–​11). Virtual reality
applications in forensic psychiatry. Proceedings of the Virtual Reality International
Conference. Laval Virtual (VRIC 14), Laval, France.
231

Offender-Focused Interventions231

Billstedt, E., Anckarsater, H., Wallinius, M., & Hofvander, B. (2017). Neurodevelopmental
disorders in young violent offenders: Overlap and background characteristics.
Psychiatry Research, 252, 234–​241.
Browning, A., & Caulfield, L. (2011). The prevalence and treatment of people with
Asperger’s syndrome in the criminal justice system. Criminology and Criminal
Justice, 11, 165.
Combating Autism Act of 2006, Pub. Law No 109-​ 416 (2006). http://​www.
amchp.org/​ Policy- ​ Advocacy/ ​ D ocuments/ ​ C ombating%20Autism%20Act%20
Summary%204-​08.pdf
Criminal Justice Joint Inspections (2021). Neurodiversity in the criminal justice
system: a review of evidence. https://​www.justiceinspectorates.gov.uk/​cjji/​wp-​con-
tent/​uploads/​sites/​2/​2021/​07/​Neurodiversity-​evidence-​review-​web-​2021.pdf
Department of Health. (2014). Think autism: Fulfilling and rewarding lives. The strategy
for adults with autism in England: An update. https://​assets.publishing.service.gov.
uk/​government/​uploads/​system/​uploads/​attachment_​data/​file/​299866/​Autism_​
Strategy.pdf
Department of Health. (2019). “Right to be heard”: The Government’s response to the
consultation on learning disability and autism training for health and care staff.
Published the 5th November: https://​assets.publishing.service.gov.uk/​govern-
ment/​uploads/​system/​uploads/​attachment_​data/​file/​844356/​autism-​and-​learning-​
disability-​training-​for-​staff-​consultation-​response.pdf
Department of Health and Social Care (2021). The national strategy for autistic children,
young people and adults: 2021 to 2026. https://​www.gov.uk/​government/​publications/​
national-​strategy-​for-​autistic-​children-​young-​people-​and-​adults-​2021-​to-​2026/​
the-​national-​strategy-​for-​autistic-​children-​young-​people-​and-​adults-​2021-​to-​2026
Ecker, C., Bookheimer, S., & Murphy, D. (2015). Neuroimaging in autism spectrum
disorder: Brain structure and function across the lifespan. Neurology, 14(11),
1121–​1134.
Equality Act. (2010). Equality Act 2010. www.gov.uk/​guidance/​
equality-​act-​2010-​guidance
Fazio, R. L., Pietz, C. A., & Denney, R. L. (2012). An estimate of the prevalence of autism
spectrum disorders in an incarcerated population. Open Access Journal of Forensic
Psychology, 4, 69–​80.
Fuld, S. (2018). Autism spectrum disorder: The impact of stressful and traumatic life
events and implications for clinical practice. Clinical Social Work Journal, 46,
210–​219.
Gaus, V. (2007). Cognitive behavioural therapy for adult Asperger syndrome.
Guildford Press.
George, R., & Stokes, M. (2018). Gender identity and sexual orientation in autism spec-
trum disorder. Autism, 22(8), 970–​982.
Hare, D. J. (2013). Developing psychotherapeutic interventions with people with autism
spectrum disorders. In J. L. Taylor, W. R. Lindsay, & R. Hastings (Eds.), Psychological
therapies for adults with intellectual disabilities (pp. 193–​206). John Wiley & Sons.
Haaven, J. (2006). Suggested treatment outline using the old me/​new me model. In
G. Blasingame (Ed.), Practical treatment strategies for forensic clients with severe
and sexual behaviour problems among persons with developmental disabilities.
Wood N. Barnes/​Safer Society Press.
23

232 P sychological T herapies for A dults W ith A utism

Heaton, K., & Murphy, G. (2013). Men with intellectual disabilities who have attended
sex offender treatment groups: A follow up. Journal of Applied Research in Intellectual
Disabilities, 26(5), 489–​500.
Higgs, T., & Carter, A. (2015). Autism spectrum disorder and sexual offending: Responsivity
in forensic interventions. Aggression and Violent Behaviour, 22, 112–​119.
Im, D. (2016). Trauma as a contributor to violence in autism spectrum disorder. Journal
of the American Academy of Psychiatry, 44(2), 184–​192.
Kelbrick, M., & Radley, J. (2013). Forensic rehabilitation in Asperger syndrome: A case
report. Journal of Intellectual Disabilities and Offending Behaviour, 4, 1–​2, 60–​64(5).
King, C., & Murphy, G. (2014). A systematic review of people with autism spectrum
disorder and the criminal justice system. Journal of Autism and Developmental
Disorders, 44, 2717–​2733.
Lewis, A., Pritchet, R., Hughes, C., & Turner, K. (2013). Development and implementa-
tion of autism standards for prisons. Journal of Intellectual Disabilities and Offending
Behaviour, 6(2), 68–​80.
Linehan, M. (1993). Cognitive behavioural treatment of borderline personality dis-
order: Diagnosis and treatment of mental disorders. Guildford Press.
Markham, S. (2019). Diagnosis and treatment of ASD in women in secure and forensic
hospitals. Advances in Autism, 5(1), 64–​76.
Melvin, C., Langdon, P., & Murphy, G. (2017). Treatment effectiveness for offenders with
autism spectrum conditions: A systematic review. Psychology, Crime & Law, 23(8),
748–​776.
Moulden, H., Mamak, M., & Chaimowitz, G. (2020). A preliminary evaluation of the
effectiveness of dialectical behaviour therapy in a forensic psychiatric setting.
Criminal Behaviour and Mental Health, 30, 141–​150.
Murphy, D. (2010a). Extreme violence in a young man with an autistic spectrum dis-
order: Assessment and intervention within high security psychiatric care. Journal of
Forensic Psychiatry and Psychology, 21(3), 462–​477.
Murphy, D. (2010b). Invited commentary. Understanding offenders with autism spec-
trum disorders: What can forensic services do? Commentary on Asperger syn-
drome and criminal behaviour. Advances in Psychiatric Treatment, 16(1), 44–​46.
Murphy, D. (2019). Risk assessment and management. In E. Chaplin, D. Spain, & J.
McCarthy (Eds.), Clinicians’ guide to mental health conditions in adults with autism
spectrum disorders. Jessica Kingsley Publishers.
Murphy, D., & Broyd, J. (2019). Evaluation of autism awareness training for staff in high
secure psychiatric care hospital. Advances in Autism, 6(1), 35–​47.
Murphy, D., Bush, E. L., & Puzzo, I. (2017). Incompatibilities and seclusions among
individuals with an autism spectrum disorder detained in high secure psychiatric
care. Journal of Intellectual Disabilities and Offending Behaviour, 8(4), 188–​200.
Murphy, D., & McMorrow, K. (2015). View of autism spectrum conditions held by staff
working in a high secure psychiatric hospital. Journal of Forensic Practice, 17(3),
231–​240.
Murphy, D., & Mullens, H. (2017). Examining the experiences and quality of life of
patients with an autism spectrum disorder detained in high secure psychiatric care.
Advances in Autism, 3(1), 3–​14.
Prison Reform Trust. (2018). Behaviour that challenges: Planning services for
people with learning disabilities and or autism who sexually offend. http://​www.
23

Offender-Focused Interventions233

prisonreformtrust.org.uk/​Portals/​0/​Documents/​Behaviour%20that%20challenges.
pdf
Robertson, C., & McGillivray, J. (2015). Autism behind bars: a review of the research
literature and discussion of key issues. The Journal of Forensic Psychiatry and
Psychology, 26(6), 719–​736.
Royal College of Psychiatrists. (2006). Psychiatric services for adolescents and adults with
Asperger syndrome and other autistic spectrum disorder.
Sex Offender Treatment Services Collaborative–​ Intellectual Disabilities (SOTSEC-​
ID). (2010). Effectiveness of group cognitive behavioural treatment for men with
intellectual disabilities at risk of sexual offending. Journal of Applied Research in
Intellectual Disabilities, 23, 537–​551.
Shine, J., & Cooper-​Evans, S. (2016). Developing an autism specific framework for fo-
rensic case formulation. Journal of Intellectual Disabilities and Offending Behaviour,
7(3), 127–​139.
Spain, D., O’Neil, L., Harwood, L., & Chaplin, E. (2016). Psychological interventions for
adults with ASD: Clinical approaches. Advances in Autism, 2(1), 24–​30.
Tapp, J., Moore, E., Stephenson, M., & Cull, D. (2020). The image has been changed in
my mind: A case of restorative justice in a forensic mental health setting. Journal of
Forensic Practice, 22(4), 213–​222.
Underwood, L., McCarthy, J., Chaplin, E., Forrester, A., Mills, R., & Murphy, D. (2016).
Autism spectrum disorder traits among prisoners. Advances in Autism, 2(3),
106–​117.
U.N. General Assembly. (2007, 24 January). Convention on the Rights of Persons with
Disabilities: resolution/​ adopted by the general assembly. A/​ RES/​ 61/​
106. www.
reworld.org/​docid/​45f973632.html.
Wing, L. (1997). Asperger’s syndrome: Management requires diagnosis. Journal of
Forensic Psychiatry, 2(8), 253–​257.
Worthington, R. (2016). What are the key skills that staff require to support adults on the
autism spectrum effectively? Forensic Update Compendium 2016, 61–​69.
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18

Pharmacological Interventions
T O M O YA H I R O TA A N D B RYA N H . K I N G ■

KEY CONSIDERATIONS

• Psychiatric conditions occur among autistic adults more frequently in

comparison to the non-​autistic population.
• Similar to autistic children and adolescents, psychotropic medication
treatment in autistic adults is indicated for psychiatric conditions, but
not for core autistic symptoms.
• Psychotropic medication can be an important adjunct treatment to
therapy when autistic adults suffer from moderate to severe psychiatric
conditions and have functional impairments.
• Medication needs to be used judiciously by balancing benefits and risks/​
side effects.
• The level of evidence supporting each psychotropic medication for
autistic adults is weaker than that for autistic youth due to the paucity of
controlled studies.
• Polypharmacy is common in this population in clinical practice and
deserves careful scrutiny; reduction of medication requires systematic
approaches by experienced clinicians.

OVER VIEW

This chapter highlights themes related to psychiatric medication treatment

(psychopharmacotherapy) in autistic adults. Compared to scientific data and
resources about psychopharmacotherapy in autistic children and adolescents
(AACAP Autism Parents’ Medication Guide Work Group, 2016; Mohiuddin
& Ghaziuddin, 2013), those for adult populations are scarce. Autism persists
into adulthood, and autistic-​ related difficulties are lifelong. Typically,
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Pharmacological Interventions235

autistic individuals require ongoing support and treatment, which can include
medication.
Indeed, studies have reported that psychotropic medication use in autistic
adults is higher than in the non-​autistic population (Cvejic et al., 2018). Nearly
60% are found to be on at least one psychotropic medication (Alfageh et al., 2020;
Buck et al., 2014; Cvejic et al., 2018). These psychotropic medications span a broad
range of categories, as described in detail later in this chapter. Among all of these,
the antidepressant class is the most commonly prescribed across studies. These
findings underscore that psychopharmacotherapy can be an important treatment
option for autistic adults.
In this chapter, we will cover the following topics: the role of pharmacotherapy
in autistic adults; psychiatric problems that co-​occur in autistic adults; a brief
overview of the medication classes commonly used in autistic adults and avail-
able evidence; challenges in pharmacotherapy in this population; and future
implications.

THE ROLE OF PSYCHOPHARMACOTHERAPY

IN AUTISTIC ADULTS

Indications for Pharmacotherapy

As with nonpharmacological interventions, psychotropic medication has been

explored in search of potential effects for core symptoms of autism. However, ex-
isting studies have reported that currently available medications are not effective
for the treatment of these core diagnostic symptoms, including social commu-
nication difficulties as well as repetitive and restricted behaviors and interests
(Howes et al., 2018; King et al., 2009).
In contrast, research has supported the effectiveness of pharmacotherapy
for psychiatric conditions that occur in autistic individuals (McGuire
et al., 2016). These conditions include anxiety, depression, inattention,
hyperactivity-​­impulsivity, aggression and irritability, self-​injurious behavior,
obsessive compulsive disorder, and sleep difficulties (Simonoff et al., 2008).
Therefore, current expert consensus on the role of psychopharmacotherapy in
autistic individuals is to address co-​occurring psychiatric problems/​disorders
(Howes et al., 2018).
While difficult to capture formally, it is not unreasonable to posit that improve-
ment in psychiatric co-​occurring conditions could also positively impact core au-
tistic symptoms. To the extent that anxiety could be a setting event for repetitive
behaviors, or depression could impact the desire for social interaction, successful
treatment of these conditions could be particularly important in autism. Studies
have not been specifically designed to address these questions, but such outcomes
are commonly observed in clinical practice.
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236 P sychological T herapies for A dults W ith A utism

Initiating Pharmacotherapy

Although co-​occurring psychiatric conditions can be treatment targets for

pharmacotherapy, not all autistic adults who have these psychiatric conditions
require medication. As psychiatrists may not be the first clinicians who see
autistic adults, it is important for other professionals (psychologists, so-
cial workers, primary care providers) to be cognizant of when to refer these
individuals to psychiatrists. However, there are currently no practice guidelines
determining the optimal timing to initiate pharmacological treatment in au-
tism. Therefore, we suggest that, similar to au­tistic children and adolescents,
the necessity of psychotropic medication use is determined by clinicians based
on the severity of co-​occurring psychiatric conditions, the level of functional
impairment due to autism-​associated symptoms, and treatment response to
nonmedication treatment, such as behavioral therapy and psychotherapy
(McGuire et al., 2016).
Nonpharmacological interventions, including individual therapy and
parent behavioral training, are the mainstays for addressing mild symptoms.
These interventions are also essential for moderate and severe symptoms, but
some individuals may not be able to fully benefit from these evidence-​based
interventions due to the severity of symptoms. While no medication will sub-
stitute for the need to study to pass an exam, treating a headache may improve
the effectiveness of studying for that calculus test. Similarly, adults with severe
social anxiety may have difficulty attending cognitive behavioral therapy (CBT)
sessions. In such a case, the reduction of some degree of anxiety with pharma-
cotherapy could improve treatment adherence. As exemplified in these two
scenarios, the severity of psychiatric conditions supports the combination of
therapy and medication rather than therapy alone. In fact, studies involving non-​
autistic individuals have reported the superiority of combined medication and
therapy for psychiatric conditions to therapy alone or medication alone (March
et al., 2004; Piacentini et al., 2014). A common misconception about pharma-
cotherapy in autistic individuals is that medication is a last resort. However,
as described previously, pharmacotherapy can be judiciously combined with
nonpharmacological interventions.

PATIENTS’ AND CLIENTS’ PERSPECTIVES

INTO PHARMACOTHERAPY

Clinicians need to acknowledge patients’ reservations and concerns about phar-

macotherapy. There may be concerns about side-​effects, particularly in the setting
of a history of sensitivities to dietary or other environmental changes. They may
feel that medication is a confirmation that they are mentally ill or that it will fun-
damentally change who they are or how they think. Such concerns can be attrib-
utable to multiple factors, and the current psychotropic nomenclature may well be
one of the critical ones (Sultan et al., 2018). For example, autistic adults may feel
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Pharmacological Interventions237

confused if their online search reveals that the psychiatrist is proposing an “an-
tipsychotic medication” for mitigating their irritability. Although antipsychotic
medications can be indicated for a variety of symptoms unrelated to psychosis
(tics, irritability, and aggression) through their effects on dopamine receptors, the
current name “antipsychotics” does not account for how medications act in our
central nervous systems at all, potentially leading to confusion and stigma. This
disease-​based psychotropic nomenclature issue also applies to other medications,
such as antidepressants and stimulants.
Providing the neuroscience-​ based mechanism of action nomenclature
alone instead of traditional psychotropic classification names (e.g., “dopamine
antagonists” instead of “antipsychotics”) in this chapter may lead to confusion
to readers who are familiar with traditional nomenclature. Therefore, in order to
assist readers in furthering their understandings of commonly used medication
in this population, we will provide descriptions of each medication class using
both traditional and mechanism-​of-​action medication nomenclature as much as
possible (see Table 18-​1).

PSYCHIATRIC CONDITIONS THAT CO-​O CCUR

IN AUTISTIC ADULTS

There are many reasons to support the clinical importance of addressing co-​
occurring problems in autism. The presence of co-​occurring disorders is associ-
ated with poor prognosis, greater functional impairment, lower quality of life, and
increased family burden (Chiang & Gau, 2016; Joshi et al., 2010, 2013). As noted
earlier, co-​occurring problems potentially exacerbate core autistic symptoms
(e.g., exacerbations of repetitive behaviors due to anxiety; Duvekot et al., 2018).
In autistic children and adolescents, methodologically sound epidemiological
studies have revealed high co-​occurring psychiatric conditions in this population,
where attention deficit/hyperactivity disorder (ADHD), behavioral disorder, and
anxiety disorder are the most prevalent (Simonoff et al., 2008).
Research on the trajectory of these co-​occurring psychiatric problems from
childhood into adulthood is limited. One study using the Australian longitu-
dinal cohort of autistic individuals revealed that rates of emotional and behav-
ioral problems decreased over time (Gray et al., 2012). However, the rate of these
problems in adulthood (mean age 24.8 years) remained higher in the autistic
group than that in the comparison sample of adults with intellectual disability.
A recently published study that examined trajectories of emotional, behavioral/​
conduct, and ADHD symptoms using the Strengths and Difficulties Questionnaire
from childhood to adulthood among autistic individuals in the UK revealed sim-
ilar findings (i.e., a decrease in these symptoms over time; Stringer et al., 2020).
The prevalence of co-​occurring psychiatric conditions in autistic adults has a
wide variation depending on study populations (age, sex, presence of intellec-
tual disability), study settings (a total population sample versus clinically referred
sample, different countries), measurements for autistic, and measurements for
 238

Table 18-​1 Summary of Medications Commonly Used for Co-​Occurring Psychiatric Conditions in Adults With Autistic
Disease-​based category Medication Pharmacology domain/​ Mechanism of action Other names Side effects
neurotransmitter
Antidepressant fluoxetine 5-​HT reuptake inhibitor SSRI Gastrointestinal
fluvoxamine symptoms, insomnia,
sertraline activation, sexual
escitalopram dysfunction
venlafaxine 5-​HT, NE reuptake inhibitor SNRI Same as above
clomipramine 5-​HT, NE reuptake inhibitor TCA Dry mouth, constipation
mirtazapine NE, DA multimodal Sedation, appetite increase
trazodone 5-​HT, H multimodal Sedation, dry mouth
Antipsychotic aripiprazole DA, 5-​HT partial agonist and atypical, SGA Extrapyramidal
antagonist symptoms, sedation,
risperidone D, 5-​HT, NE antagonist weight gain, galactorrhea,
olanzapine DA, 5-​HT antagonist tardive dyskinesia
quetiapine DA, 5-​HT, NE multimodal
loxapine DA, 5-​HT antagonist
haloperidol DA antagonist typical, FGA
Psychostimulant methylphenidate DA, NE multimodal Appetite suppression,
amphetamine derivative insomnia
Anxiolytic lorazepam GABA positive allosteric benzodiazepine Sedation, muscle
modulator relaxation, memory deficit
hydroxyzine H antagonist Sedation
Antiepileptic valproate glutamate unclear Weight gain, sedation,
elevated liver enzyme
lamotrigine glutamate channel blocker Rash
 239

Hypnotic melatonin melatonin agonist

ramelteon
zolpidem GABA positive allosteric Sedation, muscle
modulator relaxation, memory deficit
Others propranolol NE antagonist beta-​blocker Sedation, bradycardia
guanfacine NE agonist alpha agonist Sedation, hypotension,
clonidine fatigue
atomoxetine NE reuptake inhibitor Headache, decreased
appetite
lithium carbonate lithium enzyme modulator Hand tremor, diarrhea
naltrexone opioid antagonist Gastrointestinal symptoms

Abbreviations: DA =​dopamine, FGA =​first-​generation antipsychotic, GABA =​gamma-​aminobutyric acid, H =​histamine, NE =​norepinephrine,
SGA =​second-​generation antipsychotic, SNRI =​serotonin noradrenaline reuptake inhibitor, SSRI =​selective serotonin reuptake inhibitor,
TCA =​tricyclic antidepressant, 5-​HT =​serotonin
240

240 P sychological T herapies for A dults W ith A utism

psychiatric conditions (in-​person assessment via semi-​or structured interview

vs. questionnaire alone).
To provide a better understanding of co-​occurring psychiatric disorders in au-
tistic adults, we list findings from a quantitative synthesis of 24 studies included
in a systematic review (Lugo-​Marín et al., 2019) in Table 18-​2. As seen in Table
18-​2 and reported from other studies, anxiety disorder, ADHD, and mood dis-
order are common in adulthood (Croen et al., 2015; Hofvander et al., 2009; Joshi
et al., 2013).
Other important psychiatric conditions that are not included in Table 18-​2 are
suicidality, disruptive behaviors, tics, and catatonia, all of which can be indications
for pharmacotherapy. Suicidality among autistic individuals has recently gained
substantial attention. An epidemiological study showed high frequencies of sui-
cide plans (66%) and suicide attempts (35%) in adults with Asperger syndrome
(Cassidy et al., 2014), underpinning the importance of recognizing suicidality
in this population. Disruptive behaviors, including aggression and self-​inju-
rious behaviors, have been extensively studied in autistic youth. However, these
problems also occur at higher rates in autistic adults than those with no disability
or other developmental disabilities (McCarthy et al., 2010). Lastly, catatonia is a
syndrome characterized by a group of symptoms that usually involve a lack of
movement and communication and can also include agitation, confusion, and
restlessness (Rasmussen et al., 2016), the co-​occurrence of which is more frequent
in autistic individuals than that in non-​autistic individuals (Kakooza-​Mwesige
et al., 2008).
Taken together, results from studies in autistic adults support the clinical im-
perative to further our understanding of co-​occurring psychiatric conditions in
this population. Additionally, these findings highlight the necessity for adequate

Table 18-​2 Prevalence of Co-​Occurring Psychiatric Disorders in Adults

With Autistic
Psychiatric Prevalence (%) 95% CI (%) N of studies Sample size
disorders included for
meta-​analyses
Any psychiatric 54.8 46.6–​62.7 18 3400
ADHD 25.7 18.6–​34.3 18 24511
Mood 18.8 10.6–​31.1 14 21797
Anxiety 17.8 12.3–​25.2 17 23082
Schizophrenia 11.8 7.7–​17.6 17 22176
spectrum
Substance use 8.3 4.1–​16.1 16 21661
Eating disorders 3.6 2.1–​6.1 8 678

Note: Obsessive compulsive disorder (OCD) was included in the anxiety disorder
category in this meta-​analytic study.
Modified from Lugo-​Marín et al. (2019).
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Pharmacological Interventions241

interventions to prevent negative outcomes. As pharmacotherapy is an important

treatment option, we will review available evidence for psychopharmacotherapy
in adults with autistic in the next section.

MEDICATIONS FOR CO-​O CCURRING PSYCHIATRIC

PROBLEMS/​DISORDERS

In this section, psychotropic medications used for autistic adults are summarized
in Table 18-​1. Medication names are listed with their pharmacology (neurotrans-
mitter targeted) and mechanism of action to facilitate readers’ understandings of
the neuroscience-​based nomenclature (NbN) of medications, as discussed previ-
ously and obtained from the platform for the NbN managed by the International
College of Neuropsychopharmacology (https://​www.cinp.org/​nomen​clat​ure).
Common side-​effects are also listed. Clinical indications are described in the fol-
lowing section.
When it comes to describing how medications work, it is common to identify
which neurotransmitter system or domain in the brain they primarily interact
with and also the nature of that interaction. The neurotransmitter is like a common
currency with which a system communicates. Serotonin, dopamine, norepineph-
rine, glutamate, GABA, and others each function in this way. Many medications
interact with more than one neurotransmitter system, as highlighted in Table 18-​1.
Some medications essentially act like counterfeit neurotransmitters and are called
“agonists,” and some medications get in the way of neurotransmitters and reduce
their effects. Medications that reduce or block activity are called “antagonists.”
Still other medications may affect the synthesis or natural recycling mechanisms
for neurotransmitters in the brain.

Antidepressants

The largest subgroup of antidepressants are serotonergic agents, which refer to

drugs that affect serotonin (5-​HT) systems. These agents can be categorized into
serotonin reuptake inhibitors, serotonin receptor agonists, and serotonin receptor
antagonists.

Selective Serotonin Reuptake Inhibitors (SSRIs)

SSRIs bind to the serotonin transporter (SERT) which is a transmembrane pro-
tein embedded in the presynaptic terminal. Normally, a fraction of 5-​HT binds
to SERT after it is released into the synaptic cleft and this triggers a conforma-
tional change in SERT allowing for 5-​HT to move into the neuron. The SSRI is the
first-​line medication for the treatment of anxiety and depression in neurotypical
individuals.
Although antidepressants are the most frequently prescribed class of
psychotropics among autistic adults (Buck et al., 2014; Cvejic et al., 2018), there
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242 P sychological T herapies for A dults W ith A utism

have been only a limited number of placebo-​controlled randomized controlled

trials (RCT’s) examining the efficacy and safety of SSRIs in this population. Two
studies were with fluoxetine and one study was with fluvoxamine. In these studies,
SSRIs were superior to placebo in reducing repetitive behaviors. Only one study,
with a very small sample size (n =​6), revealed the efficacy of fluoxetine in anxiety
based on the improvement of the Hamilton rating scales for anxiety, but not on
the depression scale, indicating potential effects of this medication on anxiety.
However, this needs to be replicated in studies with larger sample sizes.
A lower level of evidence for the use of SSRIs in autistic adults is also avail-
able from noncontrolled trials, case series, and case reports. In these studies,
SSRIs (fluoxetine, fluvoxamine, and sertraline) were effective for the reduction
of repetitive and aggressive symptoms (Koshes, 1997; McDougle et al., 1990;
McDougle, Brodkin, et al., 1998), but not in treating depression (Fontenelle
et al., 2004).
Taken together, a systematic review of existing studies does not support
the efficacy of SSRIs in autistic adults for core diagnostic features of autism
(Williams et al., 2013); however, it remains unknown if this finding extends to
treatment for indications for which ample evidence of efficacy exists in the ge-
neral population.

Serotonin Noradrenaline Reuptake Inhibitor (SNRI)

Like SSRIs, SNRIs also inhibit SERT, but SNRIs additionally inhibit the norep-
inephrine transporter by binding allosterically. Venlafaxine, in a retrospective
review of 10 autistic adults, was associated with improvements in repetitive
behaviors and interests, social deficits, communication, inattention, and hyperac-
tivity (Hollander et al., 2000); however, neither anxiety nor depressive symptoms
were measured in this study.

Tricyclic Antidepressant (TCA)

Tricyclic antidepressants take their name from the chemical structure of the
drug molecule. Their mechanism of action is complex but they bind to spe-
cific receptor sites and mimic the action of endogenous neurotransmitters like
serotonin.
Although nearly half of the 33 autistic adults showed good response to the
TCA clomipramine, with reductions of repetitive thoughts and behaviors
and aggression in an open-​label trial (Brodkin et al., 1997), this medication
failed to improve stereotypy in a controlled study including autistic adults
(Remington et al., 2001). This controlled study also revealed poor tolerability
of clomipramine; nearly 40% of participants prematurely dropped out from the
study due to side effects, including exacerbations of behavioral problems. Due
to their side effects (see Table 18-​1), particularly the potential to lower seizure
threshold in individuals with epilepsy, TCAs are not commonly prescribed in
autism.
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Pharmacological Interventions243

Other Serotonergic Drugs

As noted previously, in addition to inhibiting neurotransmitter reuptake, there are
also serotonergic medications that act directly on 5-​HT receptors. Among them,
buspirone is a serotonin partial agonist. It also has a slight affinity for dopamine
receptors in the brain. Buspirone showed some benefits with reductions of chal-
lenging behaviors, including self-​injurious behaviors in autistic individuals and
intellectual disabilities (Brahm et al., 2008) and in anxiety in adults with Williams
syndrome (Dratcu et al., 2007).
Combining aspects of many serotonergic agents, mirtazapine is both phar-
macologically unique and complex. Mirtazapine is an antagonist of α2-​adren-
ergic, 5-​HT, and histamine receptors, and thus may target anxiety, depression,
and even insomnia, the effects of which is supported only in a case report (Posey
et al., 2001).
Trazodone is another common serotonin modulator that exerts antidepressant
effects principally by blocking the 5-​HT2A receptors present throughout the ne-
ocortex. Trazodone also possesses considerable H1 and α-​adrenergic receptor an-
tagonism and is thus used for the treatment of insomnia.

Antipsychotics

Antipsychotics are divided into two classes: typical (or first-​generation) and atyp-
ical (or second-​generation) depending on their pharmacology. Currently, two
atypical antipsychotics, risperidone and aripiprazole, are the only medications
that have U.S. FDA approval for the treatment of behaviors associated with autism,
specifically irritability and aggression. While these medications are approved only
for autistic children and adolescents, they are widely prescribed for autistic adults
(Alfageh et al., 2020; Buck et al., 2014).

Atypical Antipsychotics
Only one placebo-​controlled study examined the efficacy and safety of atypical anti-
psychotic medication in autistic adults, where risperidone, a D2 receptor antagonist,
effectively reduced repetitive behavior, irritability and aggression, anxiety, and depres-
sion (McDougle, Holmes, et al., 1998). Participants tolerated risperidone well in this
trial, only with mild transient sedation. Evidence of other atypical antipsychotics, in-
cluding aripiprazole and olanzapine, was only supported by case series; both of these
medications mitigated challenging behaviors (Jordan et al., 2012; Potenza et al., 1999).
Appetite increase and weight gain were problematic in patients with olanzapine.

Typical Antipsychotics
A placebo-​controlled trial of haloperidol in autistic adults demonstrated the
­efficacy of this typical antipsychotic medication in reducing irritability and hy-
peractivity (Remington et al., 2001). However, nearly one third of participants
prematurely discontinued the study due to side effects, including but not limited
to fatigue, lethargy, and dystonia.
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244 P sychological T herapies for A dults W ith A utism

Antiepileptics and Mood Stabilizers

Many antiepileptic (anticonvulsant) medications, including valproate, are also used

as mood stabilizers. No controlled studies have been conducted using antiepileptics
in autistic adults. Although one noncontrolled study demonstrated that autistic
adult patients with valproate reported improvement in aggression and impul-
sivity (Hollander et al., 2001), a meta-​analysis of existing controlled trials with
antiepileptics in autistic youth did not support the superiority of antiepileptics,
including valproate, over placebo (Hirota et al., 2014).
Lithium is a nonantiepileptic mood stabilizer. Despite a wealth of empirical ev-
idence supporting its efficacy in stabilizing mood, specific mechanisms by which
lithium exerts its mood-​stabilizing effects are not well understood. The evidence
level of the efficacy of lithium for behavioral problems in autism is limited to a
retrospective chart review (Mintz & Hollenberg, 2019).

Psychostimulants

As neurodevelopmental disorders typically persist into adulthood, autistic adults

and ADHD may require ongoing treatment for their ADHD, including pharma-
cotherapy. However, there have been no controlled trials on stimulants, alpha
­adrenergic drugs, or atomoxetine conducted in this population. Instead, studies
in autistic adults are limited to one case report (Roy et al., 2009). Due to the pau-
city of data, it is recommended that providers follow the pharmacology guidelines
issued by national or international organizations.

Anxiolytics/​Benzodiazepine (BZP)

Benzodiazepines (BZPs) have also been found to be efficacious in the treatment of

generalized anxiety disorder (GAD) in adults without autism, generally leading to
a reduction of emotional and somatic symptoms within minutes to hours. The use
of BZPs should generally be limited to the short-​term and tapered off gradually
due to concerns about risks of dependence and tolerance.
In clinical practice, short-​term use of BZPs can be beneficial for some individuals
with and without autism to ease their fear and anxiety before procedures (for
example, dental procedures). However, the use of BZPs requires some caution,
particularly in autistic adults, given that it is anecdotally reported that these
individuals are more likely to have paradoxical reactions to GABA-​promoting
agents, including BZPs, compared to nonautistic individuals. Paradoxical
reactions are characterized by increased talkativeness, emotional release, excite-
ment, and excessive movement.
The use of BZPs in autism is mostly reported in cases with catatonia. Although
no controlled studies have been conducted, experts in this field recommend lor-
azepam as the first-​line medication for catatonia (Fink et al., 2006).
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Pharmacological Interventions245

OTHER MEDICATIONS THAT ARE USED

FOR AUTISTIC ADULTS IN CLINICAL PRACTICE

Naltrexone

Based on a hypothesis that self-​injurious behaviors may be due to overactivity in

opioid systems, researchers have examined the efficacy of naltrexone, an opioid
antagonist, in autistic individuals; however, two small sample-​sized controlled
trials failed to show the superiority of naltrexone in reducing aggression and self-​
injury over placebo in autistic adults (Willemsen-​Swinkels et al., 1995; Zingarelli
et al., 1992).

Alpha-​2 Agonists

Clonidine and guanfacine stimulate presynaptic autoreceptors that dampen ad-

renergic tone. This property accounts for their usefulness in severe hypertension,
opiate withdrawal, and pain syndromes. In clinical psychiatry, these agents are
used for ADHD (note that extended-​release form of clonidine and guanfacine
are approved for ADHD), tic disorders, anxiety, and impulsive aggression.
A controlled trial of the extended-​release guanfacine reported its efficacy for
ADHD in autistic children and adolescents (Scahill et al., 2015). Despite the per-
sistence and progression of the symptoms and disorders described previously
from childhood into adulthood, there is a paucity of evidence in the use of these
medications in adult populations.

Beta Blockers

Propranolol can be used for reducing emotional and behavioral dysregulation

(Sagar-​Ouriaghli et al., 2018). In a controlled trial of propranolol in autistic
adults, the primary outcome was a change in performance on the conversational
reciprocity task (Zamzow et al., 2016). In this study, however, neither autonomic
activity nor anxiety was significantly associated with drug response.

CHALLENGES IN PHARMACOTHERAPY

Polypharmacy, defined as the concurrent use of multiple medications, is common

in autistic adults, with as many as half taking two or more psychotropic drugs
(Buck et al., 2014; Esbensen et al., 2009). In particular, studies have reported
the trend toward increasing the use of more than one antipsychotic in the treat-
ment of behavioral problems in autistic individuals (Schubart et al., 2014). This
is concerning, considering the risks of adverse effects associated with these
medications, including extrapyramidal symptoms, weight gain, and metabolic
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246 P sychological T herapies for A dults W ith A utism

risks. Furthermore, the effectiveness of polypharmacy is minimally supported by

evidence.
Although no regulations are placed on autistic individuals specifically, the use
of antipsychotics and other psychotropic medications in individuals with intel-
lectual disability is strictly regulated in institutional settings by federal and state
agencies in the United States (Janowsky et al., 2005). The guidelines include pe-
riodic case reviews to determine the necessity of psychotropic medications and
use of the lowest effective dose or minimally effective doses needed. Thus, psy-
chotropic medication reductions and discontinuations are routine in institutions
for individuals with intellectual disabilities (Janowsky et al., 2005). However,
relapse of aggressive and other target symptoms during medication withdrawal
trials is common and can be clinically severe in individuals with intellectual
disabilities as well as autism (Haessler et al., 2007; Research Units on Pediatric
Psychopharmacology Autism Network, 2005). For an individual who was treated
with a medication for symptoms of irritability, who is no longer actively sympto-
matic after a lengthy period of time, it is absolutely appropriate to determine if the
drug is still necessary. However, for an individual with well-​documented bipolar
disorder, whose mood stabilizing medication is meant to prevent the recurrence
of episodes, the decision to withdraw an effective treatment (measured by the ab-
sence of illness), is much more complicated.
In clinical practice, it can often be challenging to assess whether autistic adults
benefit from polypharmacy on psychotropics or not and to determine medi-
cation reductions and discontinuations. This is particularly common when we
see adult patients whose caregivers do not have good recollections of reasons
for polypharmacy (whether medication withdrawal was previously attempted,
how patients responded to monotherapy of psychotropic medication before).
Abrupt medication reductions or discontinuations may lead to relapses of behav-
ioral problems in autistic individuals. Additionally, as reported in some studies,
these procedures can result in the development of withdrawal dyskinesia (de-
fined as involuntary movements after the discontinuation of or the reduction
in the dosage of antipsychotics; Kumar et al., 2018). Whether individuals with
neurodevelopmental disorders, including autism, are more vulnerable to these
negative consequences or not remains unknown.

CASE STUDY

Ben is a 28-​year-​old autistic man who was diagnosed with generalised anxiety
­disorder. Although he improved somewhat after the completion of 12-​session
psychotherapy, his anxiety persisted and unfortunately deteriorated a few months
ago. This prompted a visit with a psychiatrist who recommended a trial of fluox-
etine (one of the SSRIs).
Ben initially declined a medication trial, as he was concerned about possible
suicidal ideation as a side effect of fluoxetine, which he found while searching
this medication on the internet. The psychiatrist provided information on this
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Pharmacological Interventions247

medication and assisted him in comparing the benefits and risks of the medica-
tion treatment (and of not taking medication for anxiety). The psychiatrist also
gave Ben clear instructions on how to monitor his anxiety and behaviors after
the start of fluoxetine, how frequent he required psychiatric clinic visits, when to
expect to see improvement, and what to look for as signs of recovery. Following
this thorough psychoeducation on medication treatment, Ben provided informed
consent to fluoxetine treatment.
He started with a low dose of fluoxetine, which the psychiatrist gradually
increased while carefully monitoring his anxiety as well as neurovegetative
symptoms, including sleep and appetite. Three weeks after he started fluoxetine,
the psychiatrist observed notable improvement in Ben’s anxiety symptoms, as
captured by the General Anxiety Disorder-​7 scale.

CONCLUSIO NS AND FUTURE DIRECTIONS

Despite the high prevalence of co-​occurring psychiatric conditions, evidence spe-

cifically informing psychopharmacotherapy among autistic adults is scarce. Many
existing studies are open-​label trials, and the sample size of existing RCTs is small,
leading to the lack of power to determine the efficacy and safety of psychotropics
in this population. Large-​scale controlled studies and long-​term follow-​up studies
are clearly needed. Taken together, at this point, we recommend that providers
follow currently available guidelines (albeit not developed exclusively for autistic
individuals) for treating these psychiatric conditions in autism.
Polypharmacy is pervasive in this population, reflecting challenges that
physicians face both in the assessment and treatment of these conditions. This
phenomenon is concerning as these individuals can be sensitive to psychotropics.
A dearth of physicians specializing in pharmacological interventions for co-​
occurring psychiatric conditions in this population may contribute to poly-
pharmacy. It is clear that more training programs providing adequate education
and clinical experiences in this field, and clinical systems allowing primary care
providers or general psychiatrists to consult specialists, in this field could be
impactful.
Lastly, more discussions about optimal outcomes in clinical trials in the au-
tistic population are needed. Although existing studies have mostly focused on
improvements in psychopathology, capturing changes in life satisfaction and well-​
being could be alternative and important measures of success for au­tistic adults in
future intervention studies.

REFERENCES

AACAP Autism Parents’ Medication Guide Work Group. (2016). Autism spectrum
disorder: Parents’ medication guide. American Academy of Child and Adolescent
Psychiatry.
248

248 P sychological T herapies for A dults W ith A utism

Alfageh, B. H., Man, K. K. C., Besag, F. M. C., Alhawassi, T. M., Wong, I. C. K., & Brauer,
R. (2020). Psychotropic medication prescribing for neuropsychiatric comorbidities
in individuals diagnosed with autism spectrum disorder (ASD) in the UK. Journal
of Autism and Developmental Disorders, 50(2), 625–​633.
Brahm, N. C., Fast, G. A., & Brown, R. C. (2008). Buspirone for autistic disorder in a
woman with an intellectual disability. Annals of Pharmacotherapy, 42(1), 131–​137.
Brodkin, E. S., McDougle, C. J., Naylor, S. T., Cohen, D. J., & Price, L. H. (1997).
Clomipramine in adults with pervasive developmental disorders: A prospective
open-​label investigation. Journal of Child and Adolescent Psychopharmacology, 7(2),
109–​121.
Buck, T. R., Viskochil, J., Farley, M., Coon, H., McMahon, W. M., Morgan, J., & Bilder, D.
A. (2014). Psychiatric comorbidity and medication use in adults with autism spec-
trum disorder. Journal of Autism and Developmental Disorders, 44(12), 3063–​3071.
Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M., & Baron-​Cohen, S.
(2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s
syndrome attending a specialist diagnostic clinic: A clinical cohort study. The Lancet
Psychiatry, 1(2), 142–​147.
Chiang, H.-​L., & Gau, S. S.-​F. (2016). Comorbid psychiatric conditions as mediators to
predict later social adjustment in youths with autism spectrum disorder. Journal of
Child Psychology and Psychiatry, 57(1), 103–​111.
Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015).
The health status of adults on the autism spectrum. Autism, 19(7), 814–​823.
Cvejic, R. C., Arnold, S. R. C., Foley, K.-​R., & Trollor, J. N. (2018). Neuropsychiatric
profile and psychotropic medication use in adults with autism spectrum dis-
order: Results from the Australian Longitudinal Study of Adults with Autism.
BJPsych Open, 4(6), 461–​466.
Dratcu, L., McKay, G., Singaravelu, V., & Krishnamurthy, V. (2007). Aripiprazole
treatment of Asperger’s syndrome in the acute psychiatric setting: Case report.
Neuropsychiatric Disease and Treatment, 3(1), 173–​176.
Duvekot, J., Ende, J. van der, Verhulst, F. C., & Greaves‐Lord, K. (2018). Examining
bidirectional effects between the autism spectrum disorder (ASD) core symptom
domains and anxiety in children with ASD. Journal of Child Psychology and
Psychiatry, 59(3), 277–​284.
Esbensen, A. J., Greenberg, J. S., Seltzer, M. M., & Aman, M. G. (2009). A longitu-
dinal investigation of psychotropic and non-​psychotropic medication use among
adolescents and adults with autism spectrum disorders. Journal of Autism and
Developmental Disorders, 39(9), 1339–​1349.
Fink, M., Taylor, M. A., & Ghaziuddin, N. (2006). Catatonia in autistic spectrum
disorders: A medical treatment algorithm. International Review of Neurobiology, 72,
233–​244.
Fontenelle, L. F., Mendlowicz, M. V., Bezerra de Menezes, G., dos Santos Martins, R.
R., & Versiani, M. (2004). Asperger syndrome, obsessive-​compulsive disorder, and
249

Pharmacological Interventions249

major depression in a patient with 45,X/​46,XY mosaicism. Psychopathology, 37(3),

105–​109.
Gray, K., Keating, C., Taffe, J., Brereton, A., Einfeld, S., & Tonge, B. (2012). Trajectory of
behavior and emotional problems in autism. American Journal on Intellectual and
Developmental Disabilities, 117(2), 121–​133.
Haessler, F., Glaser, T., Beneke, M., Pap, A. F., Bodenschatz, R., Reis, O., & Zuclopenthixol
Disruptive Behaviour Study Group. (2007). Zuclopenthixol in adults with intel-
lectual disabilities and aggressive behaviours: Discontinuation study. The British
Journal of Psychiatry: The Journal of Mental Science, 190, 447–​448.
Hirota, T., Veenstra-​Vanderweele, J., Hollander, E., & Kishi, T. (2014). Antiepileptic
medications in autism spectrum disorder: A systematic review and meta-​analysis.
Journal of Autism and Developmental Disorders, 44(4), 948–​957.
Hofvander, B., Delorme, R., Chaste, P., Nyden, A., Wentz, E., Stahlberg, O., Herbrecht,
E., Stopin, A., Anckarsater, H., Gillberg, C., Rastam, M., & Leboyer, M. (2009).
Psychiatric and psychosocial problems in adults with normal-​intelligence autism
spectrum disorders. BMC Psychiatry, 9(1), 35.
Hollander, E., Dolgoff-​Kaspar, R., Cartwright, C., Rawitt, R., & Novotny, S. (2001).
An open trial of divalproex sodium in autism spectrum disorders. The Journal of
Clinical Psychiatry, 62(7), 530–​534.
Hollander, E., Kaplan, A., Cartwright, C., & Reichman, D. (2000). Venlafaxine in chil-
dren, adolescents, and young adults with autism spectrum disorders: An open ret-
rospective clinical report. Journal of Child Neurology, 15(2), 132–​135.
Howes, O. D., Rogdaki, M., Findon, J. L., Wichers, R. H., Charman, T., King, B. H., Loth,
E., McAlonan, G. M., McCracken, J. T., Parr, J. R., Povey, C., Santosh, P., Wallace,
S., Simonoff, E., & Murphy, D. G. (2018). Autism spectrum disorder: Consensus
guidelines on assessment, treatment and research from the British Association for
Psychopharmacology. Journal of Psychopharmacology (Oxford, England), 32(1),
3–​29.
Janowsky, D. S., Barnhill, L. J., Shetty, M., & Davis, J. M. (2005). Minimally effective
doses of conventional antipsychotic medications used to treat aggression, self-​in-
jurious and destructive behaviors in mentally retarded adults. Journal of Clinical
Psychopharmacology, 25(1), 19–​25.
Jordan, I., Robertson, D., Catani, M., Craig, M., & Murphy, D. (2012). Aripiprazole in
the treatment of challenging behaviour in adults with autism spectrum disorder.
Psychopharmacology, 223(3), 357–​360.
Joshi, G., Petty, C., Wozniak, J., Henin, A., Fried, R., Galdo, M., Kotarski, M., Walls, S.,
& Biederman, J. (2010). The heavy burden of psychiatric comorbidity in youth with
autism spectrum disorders: A large comparative study of a psychiatrically referred
population. Journal of Autism and Developmental Disorders, 40(11), 1361–​1370.
Joshi, G., Wozniak, J., Petty, C., Martelon, M. K., Fried, R., Bolfek, A., Kotte, A., Stevens,
J., Furtak, S. L., Bourgeois, M., Caruso, J., Caron, A., & Biederman, J. (2013).
Psychiatric comorbidity and functioning in a clinically referred population of
adults with autism spectrum disorders: A comparative study. Journal of Autism and
Developmental Disorders, 43(6), 1314–​1325.
250

250 P sychological T herapies for A dults W ith A utism

Kakooza-​Mwesige, A., Wachtel, L. E., & Dhossche, D. M. (2008). Catatonia in au-

tism: Implications across the life span. European Child & Adolescent Psychiatry,
17(6), 327–​335.
King, B. H., Hollander, E., Sikich, L., McCracken, J. T., Scahill, L., Bregman, J. D.,
Donnelly, C. L., Anagnostou, E., Dukes, K., Sullivan, L., Hirtz, D., Wagner, A., Ritz,
L., & STAART Psychopharmacology Network. (2009). Lack of efficacy of citalopram
in children with autism spectrum disorders and high levels of repetitive beha-
vior: Citalopram ineffective in children with autism. Archives of General Psychiatry,
66(6), 583–​590.
Koshes, R. J. (1997). Use of fluoxetine for obsessive-​compulsive behavior in adults with
autism. American Journal of Psychiatry, 154(4), 578.
Kumar, M., Mattison, R., & Baweja, R. (2018). Withdrawal-​emergent dyskinesia after
acute discontinuation of risperidone in a child with autism spectrum disorder.
Journal of Clinical Psychopharmacology, 38(6), 640–​642.
Lugo-​Marín, J., Magán-​Maganto, M., Rivero-​Santana, A., Cuellar-​Pompa, L., Alviani,
M., Jenaro-​Rio, C., Díez, E., & Canal-​Bedia, R. (2019). Prevalence of psychiatric
disorders in adults with autism spectrum disorder: A systematic review and meta-​
analysis. Research in Autism Spectrum Disorders, 59, 22–​33.
March, J., Silva, S., Petrycki, S., Curry, J., Wells, K., Fairbank, J., Burns, B., Domino, M.,
McNulty, S., Vitiello, B., Severe, J., & Treatment for Adolescents With Depression
Study (TADS) Team. (2004). Fluoxetine, cognitive-​behavioral therapy, and their
combination for adolescents with depression: Treatment for Adolescents With
Depression Study (TADS) randomized controlled trial. JAMA, 292(7), 807–​820.
McCarthy, J., Hemmings, C., Kravariti, E., Dworzynski, K., Holt, G., Bouras, N., &
Tsakanikos, E. (2010). Challenging behavior and co-​ morbid psychopathology
in adults with intellectual disability and autism spectrum disorders. Research in
Developmental Disabilities, 31(2), 362–​366.
McDougle, C. J., Brodkin, E. S., Naylor, S. T., Carlson, D. C., Cohen, D. J., & Price, L. H.
(1998). Sertraline in adults with pervasive developmental disorders: A prospective
open-​label investigation. Journal of Clinical Psychopharmacology, 18(1), 62–​66.
McDougle, C. J., Holmes, J. P., Carlson, D. C., Pelton, G. H., Cohen, D. J., & Price, L.
H. (1998). A double-​blind, placebo-​controlled study of risperidone in adults with
autistic disorder and other pervasive developmental disorders. Archives of General
Psychiatry, 55(7), 633–​641.
McDougle, C. J., Price, L. H., & Goodman, W. K. (1990). Fluvoxamine treatment of co-
incident autistic disorder and obsessive-​compulsive disorder: A case report. Journal
of Autism and Developmental Disorders, 20(4), 537–​543.
McGuire, K., Fung, L. K., Hagopian, L., Vasa, R. A., Mahajan, R., Bernal, P., Silberman,
A. E., Wolfe, A., Coury, D. L., Hardan, A. Y., Veenstra-​VanderWeele, J., & Whitaker,
A. H. (2016). Irritability and problem behavior in autism spectrum disorder: A
practice pathway for pediatric primary care. Pediatrics, 137 Suppl 2, S136–​148.
Mintz, M., & Hollenberg, E. (2019). Revisiting lithium: Utility for behavioral stabiliza-
tion in adolescents and adults with autism spectrum disorder. Psychopharmacology
Bulletin, 49(2), 28–​40.
251

Pharmacological Interventions251

Mohiuddin, S., & Ghaziuddin, M. (2013). Psychopharmacology of autism spectrum

disorders: A selective review. Autism: The International Journal of Research and
Practice, 17(6), 645–​654.
Piacentini, J., Bennett, S., Compton, S. N., Kendall, P. C., Birmaher, B., Albano, A. M.,
March, J., Sherrill, J., Sakolsky, D., Ginsburg, G., Rynn, M., Bergman, R. L., Gosch,
E., Waslick, B., Iyengar, S., McCracken, J., & Walkup, J. (2014). 24-​and 36-​week
outcomes for the Child/​Adolescent Anxiety Multimodal Study (CAMS). Journal of
the American Academy of Child & Adolescent Psychiatry, 53(3), 297–​310.
Posey, D. J., Guenin, K. D., Kohn, A. E., Swiezy, N. B., & McDougle, C. J. (2001). A
naturalistic open-​label study of mirtazapine in autistic and other pervasive devel-
opmental disorders. Journal of Child and Adolescent Psychopharmacology, 11(3),
267–​277.
Potenza, M. N., Holmes, J. P., Kanes, S. J., & McDougle, C. J. (1999). Olanzapine treatment
of children, adolescents, and adults with pervasive developmental disorders: An
open-​label pilot study. Journal of Clinical Psychopharmacology, 19(1), 37–​44.
Rasmussen, S. A., Mazurek, M. F., & Rosebush, P. I. (2016). Catatonia: Our current
understanding of its diagnosis, treatment and pathophysiology. World Journal of
Psychiatry, 6(4), 391–​398.
Remington, G., Sloman, L., Konstantareas, M., Parker, K., & Gow, R. (2001).
Clomipramine versus haloperidol in the treatment of autistic disorder: A double-​
blind, placebo-​controlled, crossover study. Journal of Clinical Psychopharmacology,
21(4), 440–​444.
Research Units on Pediatric Psychopharmacology Autism Network. (2005). Risperidone
treatment of autistic disorder: Longer-​term benefits and blinded discontinuation
after 6 months. American Journal of Psychiatry, 162(7), 1361–​1369.
Roy, M., Dillo, W., Bessling, S., Emrich, H. M., & Ohlmeier, M. D. (2009). Effective meth-
ylphenidate treatment of an adult Aspergers syndrome and a comorbid ADHD: A
clinical investigation with fMRI. Journal of Attention Disorders, 12(4), 381–​385.
Sagar-​Ouriaghli, I., Lievesley, K., & Santosh, P. J. (2018). Propranolol for treating emo-
tional, behavioural, autonomic dysregulation in children and adolescents with au-
tism spectrum disorders. Journal of Psychopharmacology (Oxford, England), 32(6),
641–​653.
Scahill, L., McCracken, J. T., King, B. H., Rockhill, C., Shah, B., Politte, L., Sanders, R.,
Minjarez, M., Cowen, J., Mullett, J., Page, C., Ward, D., Deng, Y., Loo, S., Dziura,
J., McDougle, C. J., & Research Units on Pediatric Psychopharmacology Autism
Network. (2015). Extended-​release guanfacine for hyperactivity in children with
autism spectrum disorder. American Journal of Psychiatry, 172(12), 1197–​1206.
Schubart, J. R., Camacho, F., & Leslie, D. (2014). Psychotropic medication trends among
children and adolescents with autism spectrum disorder in the Medicaid program.
Autism: The International Journal of Research and Practice, 18(6), 631–​637.
Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008).
Psychiatric disorders in children with autism spectrum disorders: Prevalence, co-
morbidity, and associated factors in a population-​derived sample. Journal of the
American Academy of Child and Adolescent Psychiatry, 47(8), 921–​929.
25

252 P sychological T herapies for A dults W ith A utism

Stringer, D., Kent, R., Briskman, J., Lukito, S., Charman, T., Baird, G., Lord, C., Pickles,
A., & Simonoff, E. (2020). Trajectories of emotional and behavioral problems from
childhood to early adult life. Autism: The International Journal of Research and
Practice, 24(4), 1011–​1024.
Sultan, R. S., Correll, C. U., Zohar, J., Zalsman, G., & Veenstra-​VanderWeele, J. (2018).
What’s in a name? Moving to neuroscience-​based nomenclature in pediatric psycho-
pharmacology. Journal of the American Academy of Child and Adolescent Psychiatry,
57(10), 719–​721.
Willemsen-​Swinkels, S. H., Buitelaar, J. K., Nijhof, G. J., & van England, H. (1995).
Failure of naltrexone hydrochloride to reduce self-​injurious and autistic behavior
in mentally retarded adults. Double-​blind placebo-​controlled studies. Archives of
General Psychiatry, 52(9), 766–​773.
Williams, K., Brignell, A., Randall, M., Silove, N., & Hazell, P. (2013). Selective sero-
tonin reuptake inhibitors (SSRIs) for autism spectrum disorders (ASD). Cochrane
Database of Systematic Reviews, 8.
Zamzow, R. M., Ferguson, B. J., Stichter, J. P., Porges, E. C., Ragsdale, A. S., Lewis, M. L.,
& Beversdorf, D. Q. (2016). Effects of propranolol on conversational reciprocity in
autism spectrum disorder: A pilot, double-​blind, single-​dose psychopharmacolog-
ical challenge study. Psychopharmacology, 233(7), 1171–​1178.
Zingarelli, G., Ellman, G., Hom, A., Wymore, M., Heidorn, S., & Chicz-​DeMet, A.
(1992). Clinical effects of naltrexone on autistic behavior. American Journal of
Mental Retardation: AJMR, 97(1), 57–​63.
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19

Ensuring Accessible and

Acceptable Service Delivery
for Adults With Autism
D E B B I E S PA I N , S U S A N W. W H I T E ,
AND FRANCISCO M. MUSICH ■

KEY CONSIDERATIONS

• There are multiple systemic and individual barriers to service access for
adults with autism.
• Engaging the client, and their family, in discussion about possible
obstacles prior to beginning therapy can be helpful in sustaining
services.
• Inquiring about the client’s preferences regarding terminology,
gender orientation, and other qualities can help reduce isolation and
unintentional harm.
• Arranging the physical space for therapy, including waiting room, to feel
safe and supportive can facilitate engagement.
• It is important that clinicians consider the client’s voice and personally
held goals in designing treatment programs and in measuring outcomes.

BARRIERS TO ACCESSIBLE PSYCHOLOGICAL THERAPY

FOR ADULTS WITH AUTISM

Despite high rates of co-​occurring conditions, individuals with autism routinely ex-
perience difficulties accessing physical and mental health services (for review, see
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254 P sychological T herapies for A dults W ith A utism

Adams & Young, 2020; Doherty et al., 2020; Mason et al., 2019; Walsh et al., 2020).
Barriers to accessing psychological therapies for adults with autism may include:

• Service-​related factors, such as a lack of services available locally,

individuals not seeming to meet service eligibility criteria, referrals being
“bounced” between services, long waiting times, and inflexible models/​
packages of care that are unsuited to or insufficient for the needs of
individuals with autism.
• Provider-​related factors, such as poor knowledge of autism, failure
to recognize need or underestimating the extent of an individual’s
difficulties, lack of expertise in working with this client group,
stigma, perceptions that individuals with autism do not benefit
from psychological therapy, and limited understanding of how to
appropriately adapt communication style and interventions.
• Client-​related factors, such as not knowing how to ask for support or
lack of confidence to do so, feeling overwhelmed by the help-​seeking
process, limited satisfaction with or trust in services and clinicians,
insufficient time, social communication difficulties, sensory sensitivities,
cognitive rigidity, difficulties tolerating change and uncertainty, and
therapy “burn out” following years of receiving a myriad services from
many providers.
• A paucity of funding for services.

Taken together, adults with autism can experience multiple barriers to accessing
psychological therapy. There is, therefore, an impetus to understand barriers at
both individual and systemic levels, so as to increase therapy accessibility, accept-
ability and, in turn, effectiveness.

TAI LORING INTAKE AND SER VICE PROVISION

Beginning with a new mental health provider is anxiety provoking for most
clients. It is likely amplified for adults with autism. Even though they often have
prior experience of working with providers from a range of disciplines, it may be
their first experience of independently securing services or in being expected to
complete forms and actively engage (rather than relying on their parent or care-
giver) in the process. Likewise, they may be accompanied to appointments by a
guardian, sibling, or other familiar person.

Clinical Practice Implications

• Service providers are likely to benefit from knowledge and

understanding of autism in order to be able to develop autism-​friendly
and autism-​specific services.
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Service Delivery for Adults With Autism255

• When possible, adults with autism (and their families, as appropriate)

should be involved in discussions and decision-​making about developing
services they might access.
• If possible, intake forms/​materials should be proofread by clients with
autism, to ensure clarity. Avoid use of jargon.
• New clients may prefer to complete intake paperwork remotely, prior
to the first session, to reduce time in the waiting room and so they can
secure help from others, as needed.
• Some clients may need assistance to complete intake paperwork by
their caregivers or the provider, in particular, when if they also have an
intellectual disability or impaired language skills.
• Clients’ expectations for the involvement of guardians/​others in sessions
should be clarified. Privacy rules should be explained.
• It can be important to accommodate sensory sensitivities. This may include
setting up the waiting area and office to be calming, reducing distractions,
and avoiding perfumes, strong scents and bright lights. Explicitly asking
clients if there is anything they find distracting or irritating can be helpful,
as they may not think to mention this or may feel nervous to do so.
• Clients’ preferences for communicating with others, such as using email,
text messages or the phone, should be clarified at the outset.

ENHANCING COMMUNICATION

In setting up accessible services, providers must be attentive to what communica-

tion modalities are used and the language used within. In our collective experi-
ence, being very clear in spoken and written language is important in therapeutic
work with adults with autism. Using jargon, colloquialisms, or nonspecific and
undefined terms can cause confusion and stress. Rather than being related to cog-
nitive or even verbal ability, this unneeded confusion is more likely a function of
a tendency toward literal interpretation and limited automaticity in using context
cues to aid interpretation. Additionally, even well-​intentioned providers can un-
knowingly conduct microaggressions (Williams, 2020) and risk alienating a new
client if assumptions (e.g., about gender identity, orientation, or preference for
caregiver involvement) are made without first checking the client’s preferences.
Related to this and the growing body of research indicating heightened gender
diversity within autism (Strang et al., 2020), we find it helpful to use nongendered
pronouns in paperwork and ask clients at intake about preferred pronouns and
names. Clarity and respect also apply to this domain when considering the on-
going and lively debate about terminology about autism itself (see ­chapter 1).

Clinical Practice Implications

• Preferences for language used (e.g., person first or disability first

language, pronouns) should be established.
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256 P sychological T herapies for A dults W ith A utism

• Social communication and language skills can be assessed during

the first couple of sessions. This may be formally via a screening
questionnaire or speech and language therapy assessment, or informally,
in the context of interaction. It may understandably take clients time to
feel more comfortable within the therapy context.
• Providers may need to adapt their communication style. This might
involve using shorter sentences, asking about one construct at a time
(e.g., about anxiety and then low mood, rather than about how the
client is feeling), using a combination of closed rather than open-​ended
questions, and recapping frequently.
• Operationalizing terminology used (e.g., anxiety, anger, worry) may be
appropriate; definitions may change over time as clients become more
emotionally literate.
• Individuals with autism may seem less emotionally expressive, which
may either be part of autism, or result from alexithymia or mental
health symptoms (e.g., depression). Clarifying how clients are feeling
is important if there seems to be an incongruence between verbal and
nonverbal communication (e.g., their facial expressions may be flat when
discussing traumatic events).
• Using visual means alongside discussion, such as diagrams and mini-​
formulations, may be appropriate. Some clients may benefit from a
written session summary.

ACCOMMODATING HYPO-​ AND HYPERSENSORY

SENSITIVITIES AND AVERSIONS

Most individuals with autism experience sensory sensitivities and aversions

(APA, 2013), with some evidence to suggest links between sensory processing
and mental health symptoms, including anxiety, mood disturbance, and agita-
tion (for review, see Glod et al., 2015). Sensory experiences can be heightened for
individuals with autism, and it is unsurprising that anticipatory worry about, and
avoidance of, salient cues can become learned responses.

Clinical Practice Implications

• Formal or informal assessment of hypo and hyper sensory sensitivities

may be prudent. Sensory profile assessments are available but may
incur cost. Informal discussion about this can be perfectly adequate
on the proviso that a broad range of sensory experiences are explored.
The assessment may also focus on what coping strategies the client has
employed to manage these.
• Consideration of factors that appear to heighten sensory experiences,
such as during pregnancy or when tired, can also be helpful to elicit.
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Service Delivery for Adults With Autism257

• Sensory preferences should be accommodated during sessions; for

example, by checking if clients prefer the lights off or on or whether the
sound of the air conditioning is bothersome.
• Sensory issues may be relevant for the treatment formulation. These may
be causally implicated in the development or maintenance of mental
health symptoms.
• Some psychological therapies, notably CBT, emphasize reducing
safety behaviors as part of the treatment plan. These are behaviors
and responses designed to keep the person “safe,” but that indirectly
perpetuate mental health symptoms, with avoidance being a good
example of this. If sensory sensitivities and aversions contribute to
avoidance, conversation can focus on the degree to which avoidance may
be an adaptive and helpful response in some contexts (e.g., not going to
the supermarket on Christmas Eve) versus less helpful in others (e.g., not
going to a supermarket early in the morning when it is quiet).

DEVELOPING A THERAPEUTIC ALLIANCE

A strong therapeutic alliance—​ comprising agreement and collaboration on

therapy goals and tasks, and a reciprocal bond between a client and provider
(Borden, 1979)—​is found to be predictive of treatment outcomes (Baier et al.,
2020; Horvath et al., 2011). Both provider-​and client-​related factors can mediate
successful development of a therapeutic alliance. Pooled (meta-​analytic) findings
from neurotypical samples suggest that, on average, clients do better when seen
by providers who are more adept at developing an alliance (Del Re et al., 2012).
Scant research has focused on the therapeutic alliance in psychological therapy
for individuals with autism. However, preliminary evidence indicates this may
be similarly important when examined in studies about CBT (Kerns et al.,
2018; Klebanoff et al., 2019), mindfulness (Brewe et al., 2021) and social skills
interventions for children, adolescents, and/​or young adults with autism. A con-
sistent theme in this burgeoning area of research is that the therapeutic alliance is
dynamic (i.e., this may become stronger or weaker during therapy); for example,
factors including autism symptom severity, affective symptoms, and emotion reg-
ulation can influence development and strength of the therapeutic alliance (Brewe
et al., 2021; Kerns et al., 2018; Klebanoff et al., 2019).

Clinical Practice Implications

• Providers may wish to consider factors that impact development of a

therapeutic alliance. This could include core autism traits (e.g., social
motivation, capacity for reciprocity, quality and amount of social
overtures), mental health symptoms (e.g., social anxiety, low mood,
negative symptoms of psychosis), negative beliefs about others (e.g., that
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258 P sychological T herapies for A dults W ith A utism

others cannot be trusted, concerns about abandonment), negative beliefs

about self (e.g., about being inept or different), adverse life events (e.g.,
victimization, exploitation) or a lack of opportunities to engage in social
relationships and learn the skills integral to this.
• Clarification of clients’ preferences for social interaction with others,
within the boundaries of therapy, can be explored; for example, do they
enjoy or dislike small talk, are they aware that personal questions they
ask of providers may be unanswered.
• Providers can role model norms and conventions inherent to social
relationships.
• Clients should have time to talk about their hobbies and interests. They
may find these easier and more engaging topics than conventional
small talk.
• Clarity should be provided about the parameters of interaction during
therapy and once this has ended; for example, confirming preferred
methods of communication between sessions and the speed with which
clients might expect a reply, whom to contact when if there are more
urgent concerns, and whether contact ceases at the point of discharge
from therapy.
• It can be useful to find out about the types of situations that can
contribute to misunderstandings and disagreements and how these are
typically resolved. There may be a standing agenda item at the end of
sessions to confirm if the provider has made any comments that have led
to upset or concern.

GENERAL PRINCIPLES FOR ADAPTING THERAPY

As is exemplified in c­ hapters 2 to 17, many adults with autism can benefit from
adaptations to the session structure and content, irrespective of the therapeutic
modality, to accommodate core autism traits, impairments in facets of executive
functioning (EF; e.g., information processing style, difficulties with generativity
and attention), impaired theory of mind, and alexithymia. It is often not pos-
sible to undertake formal assessment of cognitive functioning within a psycho-
logical therapy service; this is usually considered to be beyond the remit of the
service and there may be a lack of appropriately qualified clinicians to conduct
this. Additionally, many adults, and especially those diagnosed with autism in
adulthood and who have been able to complete formal education without sub-
stantial problems, are presumed to have an intelligence quotient (IQ) in at least
the average range. They are, therefore, unlikely to have had cognitive assessment
elsewhere.
Adults with autism may not feel comfortable telling providers about their
preferences and needs spontaneously. Alternatively, they may not tend to initiate
many social overtures (which is characteristic of autism), or it may not occur to
them that they can do this. They may be prone to acquiescing in conversation
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Service Delivery for Adults With Autism259

with others, particularly if they are in a novel, unfamiliar, or anxiety-​provoking

situation. It is also important to bear in mind that many adults with autism have
had therapy before, with varying degrees of success. For some, this may have been
a useful and suitably adapted series of sessions, and what they are now looking
for is a “top up.” Yet for others, this may have been a confusing, overwhelming, or
distressing experience, resulting in worries about failing, getting it wrong or being
beyond help. Worries such as these can increase anxiety about further sessions,
hopelessness about ability to reach therapeutic goals, and ultimately reduce pro-
pensity to be assertive.

Clinical Practice Implications

• As part of the initial assessment session(s), it is important to find out

about a client’s capabilities and strengths. This might involve asking them
to walk the provider through “a typical day,” prompting for information
about their autonomy and independence to complete activities of daily
living, and clarifying who else in the system offers support, if at all.
When possible, focus on the here-​and-​now and one or two junctures
in the past, perhaps when their circumstances were different, such as at
college or in a prior job, as this can illustrate the trajectory of functioning
or impairment.
• Specific activities that can be helpful to ask about—​in order to develop
rapport, enhance reciprocity in interaction, and find out more about
the individual—​include how able they are to follow a sequence of
events from start to finish (e.g., grocery shopping for the week,
planning and cooking a meal, going on a trip to an unfamiliar
location), completing nonroutine tasks at work (e.g., preparing and
delivering a presentation, first week at a new job), and managing
unexpected social situations (e.g., a surprise party, a disagreement
with a friend or colleague).
• Attention should also be given to establishing the degree to which
mental health symptoms, such as anxiety or low mood, impact on
volition to engage in tasks, and completion of these. It may be that as
mental health starts to improve during therapy, functioning may also
improve.
• Clients may be able to say what could make the structure, timing, and
duration of sessions more manageable for them. If they find it difficult to
generate examples, providers may need to offer suggestions. Providing a
checklist of aspects of sessions that can be adapted and asking clients to
reflect on this between sessions might feel easier for some.
• Related to this, “rules” and expectations for therapy should be
contracted, which may include between-​session practice and
assignments, as problems with EF can often lead to difficulty with
homework completion.
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260 P sychological T herapies for A dults W ith A utism

MEASURING OUTCOMES

Determining whether psychological therapy has gleaned favorable outcomes

for clients, and how so, is clearly important. Choice of outcome measurement
can vary according to the service setting and therapeutic modality, with perhaps
stronger emphasis placed upon this for evaluating the effectiveness of behavioral
therapy and CBT.
Some adults with autism struggle to complete self-​report questionnaires, such
as those that focus on mental health symptoms, distress, or emotional well-​being.
This can be due to a range of factors, including poor ecological validity of questions,
alexithymia, amotivation, and perseveration over responses. There are also wider
considerations associated with using standardized mental health outcome meas-
ures with individuals with autism, notably that psychometric properties (e.g., nor-
mative thresholds) and validity and reliability are largely unknown (Brugha et al.,
2015). This means scores above or below the indicative threshold on a question-
naire may require further exploration rather than being taken at face value.
Asking clients to complete questionnaires is fairly standard practice in child
and adolescent mental health contexts. However, discrepancies between self-​and
informant ratings are not uncommon, especially for symptoms of internalizing
conditions (De los Reyes et al., 2015). There are advantages and considerations
with asking family, friends, or colleagues to complete questionnaires when
working with adults with autism. On the one hand, this can provide a wider per-
spective about how things are outside the therapy room, in terms of symptoms,
well-​being and functioning. Additionally, family in particular, may be well placed
to comment on the stability and trajectory of symptoms over time. On the other
hand, some adults with autism may understandably not want others to be aware
that they are having therapy. Additionally, adults with autism may perceive that
their opinions are not valid or that these are being quashed by others, potentially
impacting their engagement and propensity to be assertive.

Clinical Practice Implications

• Responses on self-​report screening questionnaires should be discussed

with clients. If they score below the indicative threshold on a measure
that is used to determine eligibility for services, it may be worthwhile
taking into account other available information that could help to
contextualize presenting problems, instead of declining support.
• After assessment, decisions about which questionnaires to use should be
informed by the treatment formulation.
• Constructs assessed on questionnaires (e.g., emotional well-​being),
terminology used (e.g., feeling down, hopeless) and directionality of
statements (e.g., straightforward versus reverse-​scored items) may
warrant explanation.
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Service Delivery for Adults With Autism261

• Clients may benefit from support to complete questionnaires. They may

need more time than is usual but may feel uncomfortable about asking
for help.
• If using more than one self-​report questionnaire, choose those that focus
on the same time period if feasible (e.g., symptoms during the last week
or month).
• Clients’ thoughts about an informant (e.g., parent or partner) completing
questionnaires should be elicited. Scores should be discussed in a
sensitive manner.
• Completing questionnaires at each session may be too onerous, and this
can be a factor for clients disengaging with therapy.
• It can be useful to develop idiosyncratic scales. These may incorporate
special interests.
• Measuring change via subjective units of distress (SUDS) ratings
represents an alternative or complementary option to formal
questionnaires.

CONSIDERATIONS FOR PROVIDERS

Research to date indicates that health professionals working in non-​autism serv-

ices can lack knowledge about autism and related conditions (for review, see
Corden et al., 2021), partly as there is typically minimal formal teaching about au-
tism in core professional (clinical) training (Maddox et al., 2020). Providers may
also have limited confidence or skills around adapting standard interventions for
individuals with autism (Adams & Young, 2020).
Attitudes towards autism, and working with clients with autism, can also influ-
ence practice (Corden et al., 2021). In a sample of 100 providers delivering CBT,
for example, participants had more favorable attitudes and higher descriptive nor-
mative pressure (i.e., that others would like them to offer therapy) about working
with people without, rather than with, autism (Maddox et al., 2019).
Treatment fidelity, defined as the degree to which a treatment is delivered as
intended, is understandably deemed important within psychological therapy
(Fonagy & Luyten, 2019). However, as implementation science has grown in
recent years, clinical researchers have grown more aware of the need for flexi-
bility in implementation, sometimes at the cost of fidelity in order to optimize
the effectiveness of the treatment (Cohen et al., 2008). Ensuring treatment fi-
delity in routine practice can be more complex when working with adults with
autism. For instance, clients may well present with more than one condition,
meaning that the treatment approach may need to incorporate aspects of sev-
eral protocols. Alternatively, it may be that providers need to adopt a more
didactic or directive style during sessions and when setting homework, even
if a more Socratic manner is integral to the therapeutic approach (e.g., CBT
or EMDR).
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262 P sychological T herapies for A dults W ith A utism

Taken together, it seems possible that some providers may feel uncomfortable
about deviating from manualized interventions or they may decide not to de-
liver a protocolized therapy. This thereby potentially limits the treatment options
available to adults with autism. Providers or trainees may also fail therapy fidelity
scales when their practice is assessed on these, even if they are providing good
quality therapy and when some points are less relevant for working with some
adults with autism.

Clinical Practice Implications

• Service managers should ensure all professionals working in clinical

services have access to robust autism training programs. Training
may comprise elements of general awareness (e.g., what is autism), as
well as more specific topics for providers (e.g., how to adapt standard
psychological approaches). Training should be co-​produced with adults
with autism and families, in so far as is possible.
• Providers can benefit from having regular clinical supervision or
consultation with someone with experience and expertise in working
with adults with autism. Augmenting individual supervision with group/​
peer meetings may enhance options for shared learning.
• Opportunities to reflect on assumptions about autism (e.g., whether
anxiety is part of or separate to autism, whether adults with autism
can engage in cognitive interventions, how far one can deviate from a
protocolized treatment, what types of outcomes are realistic to work
towards), can be an important aspect of clinical supervision.
• Providers should attempt to manage a balance between fidelity
(integrity) to the manual or therapeutic approach they are deploying,
with sufficient flexibility to “meet the client where they are,” so to speak.

CONCLUDING REMARKS

Contributing authors to this edited book provide comprehensive and informa-

tive overviews of psychological therapies that can be effective for treating co-​
occurring symptoms and conditions in adults with autism, with case vignettes
exemplifying theory in practice. We hope that providers will feel inspired to con-
sider offering adults with autism a broader range of interventions, depending on
presenting need, the treatment formulation, and goals for therapy.
Overall, the evidence base for several psychological therapies for adults with
autism is limited, but growing. Further research focusing on which approaches
are beneficial, when, for whom, and why, seems key. Concurrently, more research
examining how service provision can be better tailored for autistic individuals,
and what additional knowledge and skills providers can benefit from in order to
work more effectively with this client group, seems warranted.
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Service Delivery for Adults With Autism263

REFERENCES

Adams, D., & Young, K. (2020). A systematic review of the perceived barriers and facilitators
to accessing psychological treatment for mental health problems in individuals on the
autism spectrum. Review Journal of Autism and Developmental Disorders, 1–​18.
American Psychological Association. (2013). Diagnostic and statistical manual of mental
disorders (5th ed.). American Psychological Association.
Baier, A., Kline, A. C., & Feeny, N. (2020). Therapeutic alliance as a mediator of change: A
systematic review and evaluation of research. Clinical Psychology Review.
Bordin, E. (1979). The generalizability of the psychoanalytic concept of the working al-
liance. Psychotherapy: Theory, Research & Practice, 16(3), 252.
Brewe, A., Mazefsky, C., & White, S. (2021). Therapeutic alliance formation for
adolescents and young adults with autism: Relation to treatment outcomes and client
characteristics. Journal of Autism and Developmental Disorders, 51(5), 1446–​1457.
Brugha, T., Doos, L., Tempier, A., Einfeld, S., & Howlin, P. (2015). Outcome measures
in intervention trials for adults with autism spectrum disorders; a systematic review
of assessments of core autism features and associated emotional and behavioural
problems. International Journal of Methods in Psychiatric Research, 24(2), 99–​115.
Cohen, D., Crabtree, B., Etz, R., Balasubramanian, B., Donahue, K., Leviton, L., Clark,
E. C., Isaacson, N. F., Stange, K. C., & Green, L. (2008). Fidelity versus flexi-
bility: Translating evidence-​ based research into practice. American Journal of
Preventive Medicine, 35(5), S381–​S389.
Corden, K., Brewer, R., & Cage, E. (2021). A systematic review of healthcare professionals’
knowledge, self-​efficacy and attitudes towards working with autistic people. Review
Journal of Autism and Developmental Disorders, 1–​14.
De Los Reyes, A., Augenstein, T., Wang, M., Thomas, S., Drabick, D., Burgers, D., &
Rabinowitz, J. (2015). The validity of the multi-​informant approach to assessing
child and adolescent mental health. Psychological Bulletin, 141(4), 858.
Del Re, A, Flückiger, C., Horvath, A., Symonds, D., & Wampold, B. (2012). Therapist
effects in the therapeutic alliance–​outcome relationship: A restricted-​maximum
likelihood meta-​analysis. Clinical Psychology Review, 32(7), 642–​649.
Doherty, A., Atherton, H., Boland, P., Hastings, R., Hives, L., Hood, K., James-​Jenkinson,
L., Leavey, R., Randell, E., Reed, J., Taggart, L., Wilson, N., & Chauhan, U. (2020).
Barriers and facilitators to primary health care for people with intellectual disabilities
and/​or autism: an integrative review. BJGP Open, 4(3), 1–​10.
Fonagy, P., & Luyten, P. (2019). Fidelity vs. flexibility in the implementation of
psychotherapies: Time to move on. World Psychiatry, 18(3), 270–​271.
Glod, M., Riby, D., Honey, E., & Rodgers, J. (2015). Psychological correlates of sensory
processing patterns in individuals with autism spectrum disorder: A systematic re-
view. Review Journal of Autism and Developmental Disorders, 2(2), 199–​221.
Horvath, A., Del Re, A., Flückiger, C., & Symonds, D. (2011). Alliance in individual psy-
chotherapy. Psychotherapy, 48(1), 9–​16.
Kerns, C., Collier, A., Lewin, A., & Storch, E. (2018). Therapeutic alliance in youth with
autism spectrum disorder receiving cognitive-​behavioral treatment for anxiety.
Autism, 22(5), 636–​640.
Klebanoff, S., Rosenau, K., & Wood, J. (2019). The therapeutic alliance in cognitive-​be-
havioral therapy for school-​aged children with autism and clinical anxiety. Autism,
23(8), 2031–​2042.
264

264 P sychological T herapies for A dults W ith A utism

Maddox, B., Crabbe, S., Beidas, R., Brookman-​Frazee, L., Cannuscio, C., Miller, J.,
Nicolaidis, C., & Mandell, D. (2020). “I wouldn’t know where to start”: Perspectives
from clinicians, agency leaders, and autistic adults on improving community mental
health services for autistic adults. Autism, 24(4), 919–​930.
Maddox, B., Crabbe, S., Fishman, J., Beidas, R., Brookman-​ Frazee, L., Miller, J.,
Nicolaidis, C., & Mandell, D. (2019). Factors influencing the use of cognitive–​
behavioral therapy with autistic adults: A survey of community mental health
clinicians. Journal of Autism and Developmental Disorders, 49(11), 4421–​4428.
Mason, D., Ingham, B., Urbanowicz, A., Michael, C., Birtles, H., Woodbury-​Smith, M.,
Brown, T., James, I., Scarlett, C., Nicolaidis, C., & Parr, J. R. (2019). A systematic
review of what barriers and facilitators prevent and enable physical healthcare serv-
ices access for autistic adults. Journal of Autism and Developmental disorders, 49(8),
3387–​3400.
Strang, J., van der Miesen, A., Caplan, R., Hughes, C., daVanport, S., & Lai, M. (2020).
Both sex-​and gender-​related factors should be considered in autism research and
clinical practice. Autism, 24(3), 539–​543.
Walsh, C., Lydon, S., O’Dowd, E., & O’Connor, P. (2020). Barriers to healthcare for per-
sons with autism: A systematic review of the literature and development of a tax-
onomy. Developmental Neurorehabilitation, 23(7), 413–​430.
Williams, M. (2020). Managing microaggressions: Addressing everyday racism in thera-
peutic spaces. Oxford University Press.
265

INDEX

For the benefit of digital users, indexed terms that span two pages (e.g., 52–​53) may, on
occasion, appear on only one of those pages.
Tables and figures are indicated by t and f following the page number.

“ABC”s (Antecedent /​Behavior /​ anxiety/​anxiety disorders

Consequence diagrams), 8 in assessment of social
acceptance and commitment therapy performance, 81–​82
(ACT), 122–​23, 136–​37 effect on employment, 66
acceptance-​change dialectic, 149 emotion-​focused therapies, 136
accessible psychological therapy, barriers group-​based interventions, 214–​17, 215t
to, 253, See also specific therapy types pharmacological interventions, 246–​47
Acquiring Career, Coping, Executive prevalence in adults with autism, 240t
Control, and Social Skills (ACCESS) and social skills interventions, 86–​87
Program, 38 in transition to adulthood
adaptations for adults with autism. See interventions, 34–​35
also ensuring accessible and acceptable anxiolytics, 238t, 244
service delivery for adults; specific applied behavior analysis (ABA), 95
therapy types aripiprazole, 238t, 243
general principles for, 258–​59 ASD. See autism spectrum disorder;
overview, 7 psychological therapies for adults
adaptive behavior, 35 with autism; specific therapy types
adaptive emotions, 137–​38, 141–​43 Asperger East Anglia, 211–​14
adaptive information processing model assertiveness, enhancing in
(AIP), 193, 200f compassion-​focused therapy, 181t
adolescents with autism. See transition to assessment; See also psychological
adulthood interventions; university-​ therapies for adults with autism;
focused interventions specific therapy types
adults with autism. See also psychological for cognitive behavior therapy, 111
therapies for adults with autism; of communication and language
specific therapy types; skills, 256
agonists, 241 for compassion-​focused therapy, 184–​85
alexithymia, See psychological therapies for dialectical behavior therapy, 153–​54
for adults with autism; specific for eye movement desensitization and
therapy types reprocessing therapy, 198
allists, 13, 14–​15 functional, 94–​96, 99
alpha 2 agonists, 245 for offence-​focused
amphetamine derivative, 238t interventions, 227–​28
antagonists, 241 risk, 223
antidepressants, 238t, 241–​43, 246–​47 for schema therapy, 171
antiepileptics, 238t, 244 of sensory sensitivities, 256
antipsychotics, 236–​37, 238t, 243 of social performance, 80–​82, 81f
26

266 Index

assessment (cont.) cognitive behavior therapy focus on, 108

for transition to adulthood social skills interventions focused on,
interventions, 41 83, 83t
for vocational rehabilitation, 73–​74 benzodiazepines (BZPs), 238t, 244
atomoxetine, 238t beta blockers, 238t, 245
attachment narrative therapy (ANT), 22 Better OutcOmes & Successful Transitions
attention deficit/​hyperactivity disorder for ASD (BOOST-​A) program, 36–​37
(ADHD), 151, 240t, 244, 245 bilateral stimulation (BLS), 193, 196, 200–​2
atypical antipsychotics, 238t, 243 biosocial model of dialectical behavior
Autism Mentorship Initiative (AMI), therapy, 149, 154, 154t
Simon Frasier University, 54–​55 borderline personality disorder
autism spectrum disorder (ASD). See also (BPD), 148–​49
psychological therapies for adults brief mindfulness-​based
with autism; specific therapy types interventions, 124–​25
awareness training, 224–​25, 229–​30
balancing bridge between research/​ calming routine strategy, in T-​STEP, 42
science and practice, 2–​3 calm place, creating in eye movement
barriers to accessible psychological desensitization and reprocessing
therapy, 253–​54 therapy, 199, 201f
challenging behavior, 94 camouflaging, 10, 87–​88, 183–​84
and criminal justice system caregivers. See also parents of persons
involvement, 222–​23 with autism
emotional differences or difficulties goal-​planning transition to adulthood
in, 134–​35 interventions, 36–​37
history of work in, 1–​2 transition to adulthood interventions
personality weaknesses and strengths in, focused on, 36
165, 166–​67 caring commitment, in compassion-​
prevalence in adults, 1 focused therapy, 181t
self-​compassion of people with, 178 catatonia, 240, 244
self-​criticism and shame-​based CBT. See cognitive behaviour therapy
difficulties, 178–​79 CFT. See compassion-​focused therapy
trauma and, 194, 195f chain and solution analysis, 155–​57,
aversive control, 213 156f, 157f
avoidance chair dialogues
due to sensory sensitivities, 257 in emotion-​focused therapy, 138,
vicious cycle of, 213 142–​43
avoidant personality disorder, 167, 171–​74 in schema therapy, 172, 173–​74
awareness challenging behavior (CB). See also
autism, of providers, 224–​25, 229–​30, 262 positive behavioral support
empirical evidence for positive
behavioral activation (BA), 7–​9, 213 behavioral support, 97–​98
behavioral sequences, in systemic maintenance of, 95–​96
approach, 20–​21 overview, 93–​94
behavioral strategies, in cognitive children with autism, 97–​98, 167–​68,
behavioral therapy for adults with 196–​97, 237
autism, 113–​14 clinical delivery See also ­Ensuring
behaviors. See also positive behavioral accessible and acceptable service
support See also specific therapy types delivery for adults with autism
affecting employment, 65–​66 mindfulness-​based interventions, 123
267

Index267

clomipramine, 238t, 242 enhancing with adults with

clonidine, 238t, 245 autism, 255–​56
cognitive behavioral/​instructional in group-​based interventions, 209–​10
strategies (CBIS), in in positive behavioral support
T-​STEP, 40t model, 100
cognitive behavior therapy (CBT) community, transition to from forensic
adaptations/​modifications for adults settings, 227
with autism, 110–​14, 116 comorbidities. See co-​occurring
alongside social skills conditions
interventions, 86–​87 compassion, role in effectiveness of
case study, 114 –​–​16 therapy, 10–​11
compared to mindfulness-​based compassionate functional analysis, 181t
therapy—​autism compassion-​focused therapy (CFT)
spectrum, 124 case study, 183–​88, 186f
emotion-​focused therapies targeting evidence base for, 179–​83
anxiety, 136 general discussion, 189
evidence base for people with outcome measures, 179
autism, 108–​10 overview, 176–​78, 177f
experiences of psychological therapy as in practice, 179, 181t
an autistic person, 9–​13 self-​compassion of people with
general discussion, 116–​17 autism, 178
group-​delivered social skill self-​criticism and shame-​based
teaching, 211 difficulties in people with
versus mindfulness-​based cognitive autism, 178–​79
therapy, 125 therapist considerations, 188–​89
offence-​focused, 226–​27 competitive integrated employment
overview, 107–​8 (CIE), 63, 64–​65, 74–​75. See also
potential for adults with autism, 109 employment-​focused interventions
strategies and techniques, 108–​9 computer programs, in emotion-​focused
cognitive empathy, 143 therapies, 135–​36
cognitive interweaves, 200–​2 Connections program (UMass
cognitive rehabilitation (CR), 73 Lowell), 38, 54
cognitive restructuring, in cognitive consult, in dialectical behavior therapy,
behavior therapy for adults with 150, 160t, 161
autism, 113 co-​occurring conditions
cognitive style, and benefits of in assessment of social
offence-​focused interventions, 229–​30 performance, 81–​82
Collaborative Model for Promoting and dialectical behavior therapy, 151
Competence and Success for effectiveness of pharmacotherapy
Transition (COMPASS-​T), 36 for, 235
college students. See also transition to effect on employment, 66
adulthood interventions; university-​ emotion-​focused therapies
focused interventions targeting, 136
communication See also psychological initiating pharmacotherapy for, 236
therapies for adults with autism; medications for, 238t, 241–​44
specific therapy types; ­chapter 19 overview, 2–​3
adaptations/​modifications to cognitive patients’ and clients’ perspectives into
behavior therapy for adults with pharmacotherapy, 236–​37
autism, 110, 112 prevalence, 135, 237–​41, 240t
268

268 Index

co-occurring conditions (cont.) mindfulness in, 122–​23

suitability of cognitive behavior overview, 148–​50
therapy for persons with autism rationale for aspects of, 151–​52
and, 109 diary cards, 155
taking into account in social skills differential reinforcement of alternative
interventions, 86–​87 (DRA) behavior, 101
trajectory from childhood to disease-​based psychotropic nomenclature,
adulthood, 237 236–​37, 241
coping responses of individuals with disruptive behaviors, 240
autism, 168–​69, See also psychological distress, communication of, 161, See also
therapies for adults with autism; specific therapy types
specific therapy types distress tolerance, in dialectical behavior
coping with distress module, T-​STEP, 42 therapy, 158t
core beliefs, 108, 115, See also specific double empathy problem, 10
therapy types drive system, 177f, 177–​78
core pain, in emotion-​focused therapy, dysfunctional assumptions (DAs), 108, 115
137, 143
criminal justice system (CJS), individuals eating disorders, 240t
with autism in, 222–​23 ecological model of autism, 194, 195f
Curtin Specialist Mentoring Program EFT. See emotion-​focused therapy
(CSMP), 55–​56 EMDR. See eye movement desensitization
customized employment (CE) and reprocessing therapy
for adults with high support emotional transformation, in emotion-​
needs, 70–​71 focused therapy, 142–​43
as recommended intervention, 67, 68t emotion awareness and skills enhancement
(EASE) program, 125, 136
DBT. See dialectical behavior therapy emotion-​focused therapy (EFT)
depression case study, 138–​43, 139f
antidepressants, 238t, 241–​43, 246–​47 general discussion, 143–​44
experiences of psychological therapy as overview, 134–​35
an autistic person, 8–​9, 12 types of, 135–​38
schema therapy for individuals with emotion-​focused therapy for autism
autism and, 171–​74 spectrum (EFT-​AS), 137–​38, 139–​43
in transition to adulthood emotion regulation (ER) See also specific
interventions, 34–​35 therapy types
developmental strategies, in positive biosocial model, 149
behavioral therapy model, 96 in dialectical behavior therapy, 158t
diagnosis-​specific supports, effect on in individuals with autism, 134–​35
employment, 66 interventions directly targeting, 136
dialectical behavior therapy (DBT) mindfulness-​based interventions
for adults with autism, 150–​52 improving, 120–​21
case study, 152–​60, 154t, 155f, 156f, as target of dialectical behavior
157f, 158t, 160t therapy, 150–​51
clinical reflections, 161 in transition to adulthood
considering co-​occurring interventions, 34–​35
conditions, 151 emotions
emotion regulation as target, 150–​51 enhancing recognition of in
in forensic settings, 225 compassion-​focused therapy, 181t
269

Index269

psychoeducation about, in cognitive defined, 193

behavior therapy for adults with effectiveness for individuals with
autism, 112–​13 autism, 196–​97
experiences of psychological therapy as an effectiveness in general population, 194
autistic person, 14 general discussion, 203
three-​systems model, 177f, 177–​78, 181t mechanism of, 196
empathy, cognitive, 143 overview, 192
employable skills, in PS \+​ASD, 69t trauma and autism, 194, 195f
employment-​focused interventions
adults with high support needs, 67–​71 family, in dialectical behavior therapy, 159,
adults with lower support 161. See also caregivers; parents of
needs, 72–​74 persons with autism; systemic therapy
case studies, 71, 74 fear of compassion, 179, 181t, 188
evidenced-​based interventions, 67, 68t fidelity, treatment, 261–​62, See also specific
general discussion, 74–​75 therapy types
individual factors affecting fluoxetine, 238t, 241–​42, 246–​47
employment, 65–​67 fluvoxamine, 238t, 241–​42
overview, 63 forensic setting, treatment in. See offence-​
rationale for, 64–​65 focused interventions
empty chair enactments, 138, 142–​43 formulaic approaches, suitability of, 15–​16
endings functional assessment, 94–​96, 99, 185
managing in cognitive behavior therapy
for adults with autism, 114 gender identity, and social skills
managing in compassion-​focused interventions, 87–​88
therapy, 181t generalization of skills, and dialectical
engagement. See also psychological behavior therapy, 152, 159
therapies for adults with autism; genuineness, radical, 161
specific therapy types goal-​planning transition to adulthood
adaptations/​modifications to cognitive interventions, 36–​37
behavior therapy for adults with goals. See also psychological therapies
autism, 110, 112 for adults with autism; specific
in social groups, 213–​14 therapy types
escitalopram, 238t in ASD Mentorship Program at York
executive functioning (EF), 34, 66, See also University, 55
specific therapy types in assessment of social performance, 82
overview, 6–​7 in cognitive behavior therapy for adults
psychological therapy experiences of with autism, 111–​12, 115
autistic persons. compassion-​focused therapy, 185–​87
experiential techniques, in schema therapy, dialectical behavior therapy, 154–​55,
166, 169–​70, 172–​74 155f, 160
exposure and response prevention in eye movement desensitization and
(ERP), 10 reprocessing therapy, 200f
external factors influencing of schema therapy for individuals with
employment, 66–​67 autism, 171–​72
externalizing, in SAFE intervention, 23 group-​based interventions
eye movement desensitization and for adults with autism, 209–​11, 214–​
reprocessing (EMDR) therapy 17, 215t
case study, 197–​203, 198f, 200f, 201f challenges associated with, 207–​9
270

270 Index

group-based interventions (cont.) dialectical behavior therapy, 151

general discussion, 217 eye movement desensitization and
versus individual therapy, 206–​7 reprocessing therapy, 196
mindfulness-​based, 127t, 129 pharmacological interventions, 246
offence-​focused, 225 prevalence in adults with autism, 31–​32
overview, 206 intensive support, in positive behavioral
social groups, 211–​14 support model, 97
social skills interventions, 83–​85 interests, exploring in SAFE
group cohesion, 208–​9 intervention, 24
guanfacine, 238t, 245 internships, in PS \+​ASD, 69t
interpersonal effectiveness, in dialectical
hidden curriculum, social skills behavior therapy, 158t
interventions focused on, 83, 83t interpersonal functioning, 167
higher education counseling, 33t interpersonal process recall (IPR),
high school interventions, PS \+​ASD, 137, 140–​41
67–​70, 69t
high school transition services, 67, 68t, Job exploration counseling, 33t
See also transition to adulthood
interventions lamotrigine, 238t
homework, in cognitive behavior therapy learning and practicing, in compassion-​
for adults with autism, 114 focused therapy, 181t
Horizons college preparation mentoring life-​threatening behavior, 155–​57. See also
program (UMass Lowell), 52, 56–​57 suicidality
hydroxyzine, 238t lithium, 238t, 244
hypnotics, 238t lorazepam, 238t, 244
hypo/​hyper sensory sensitivities. See also loxapine, 238t
psychological therapies for adults
with autism; specific therapy types maladaptive behaviors, effect on
employment, 65–​66
identity-​first language, 3 maladaptive emotions, 137–​38, 141–​43
intellectual disability. See intellectual MBCT see mindfulness-​based cognitive
disabilities therapy
imagery rescripting, in schema MBIs. See mindfulness-​based interventions
therapy, 172–​73 McGill Transition Support Program, 37–​38
individual therapy. See also psychological mechanism-​of-​action medication
therapies for adults with autism; nomenclature, 237, 241
specific therapy types medications. See also pharmacological
in dialectical behavior therapy, 149, interventions
155–​57, 160t commonly used for adults with
versus group-​based interventions, 206–​7 autism, 245
offence-​focused, 225–​27 for co-​occurring conditions,
social skills interventions, 85, 86–​87 238t, 241–​44
insight meditation, 121–​22 meditation, mindfulness, 121–​22, 126–​29
intake, tailoring for persons with melatonin, 238t
autism, 254–​55 meltdowns, in SAFE intervention,
intellectual disabilities 23, 25–​26
challenging behavior, 94 mental health problems co-​occurring with
compassion-​focused therapy, 183 ASD See also psychological
271

Index271

therapies for adults with general discussion, 131

autism group, 127t, 129
in assessment of social mindfulness meditation, 121–​22, 126–​29
performance, 81–​82 overview, 120–​21
and dialectical behaviour therapy, 151 experiences of psychological therapy as
effectiveness of pharmacotherapy an autistic person, 13–​14
for, 235 training and clinical delivery, 123
effect on employment, 66 types of, 122–​23
emotion-​focused therapies mindfulness-​based stress reduction
targeting, 136 (MBSR), 122–​23, 124, 129–​31
initiating pharmacotherapy for, 236 mindfulness-​based therapy—​autism
medications for, 238t, 241–​44 spectrum (MBT-​AS), 123–​24
overview, 2–​3 mindfulness meditation, 121–​22, 126–​29
patients’ and clients’ perspectives into Mind Reading computer program, 135–​36
pharmacotherapy, 236–​37 mirtazapine, 238t, 243
prevalence, 135, 237–​41, 240t misempathy, 139–​40
suitableness of cognitive behavior modeling (MD), in T-​STEP, 40t
therapy for persons with autism monitoring phase, in positive behavioral
and, 109 support, 102
taking into account in social skills mood disorders, 240t
interventions, 86–​87 mood stabilizers, 238t, 244
trajectory from childhood to multidisciplinary team (MDT), in positive
adulthood, 237 behavioral support model, 99–​102
mentorship multi-​family sessions, in SAFE
ASD Mentorship Program at York intervention, 22, 23
University, 55
Autism Mentorship Initiative at Simon naltrexone, 238t, 245
Frasier University, 54–​55 narrative techniques, eye movement
Curtin Specialist Mentoring desensitization and reprocessing
Program, 55–​56 therapy, 203
Horizons program at UMass Lowell, negative automatic thoughts (NATs),
52, 56–​57 108, 115
Project REACH at City University of negative reinforcement, 213
New York, 56 neuroscience-​based nomenclature (NbN)
in university-​focused interventions, 58 of medications, 237, 241
methylphenidate, 238t neurotransmitter systems, medication
mindfulness interactions with, 238t, 241
defined, 121 nonjudgmental awareness, 121
in dialectical behavior therapy, 150, normalizing, 12–​13
152, 158t
mindfulness-​based cognitive therapy obsessive compulsive disorder
(MBCT), 122–​23, 124–​25, 136 (OCD), 9–​11
mindfulness-​based interventions (MBIs) offence-​focused interventions
for adults with autism, 123–​29, 127t case study, 227–​28
case study, 129–​31 general discussion, 228–​30
clinical strategies for delivery, 126, 127t individual, group, and organizational
defining mindfulness, 121 interventions, 223–​27
as emotion-​focused therapies, 136–​37 overview, 222–​23
27

272 Index

olanzapine, 238t general discussion, 102–​3

organizational offence-​focused origins of, 95
interventions, 223–​27 overview, 93, 94–​95
outcomes, measuring, 260–​61 as “package” of interventions, 95–​97
summary of empirical evidence for, 97–​98
parent development interview, in SAFE positive reinforcement, 213–​14
intervention, 23 postsecondary education (PSE), 72
parents of persons with autism. See also Pre-​Employment Transition Services (Pre-​
systemic therapy ETS), 32–​33, 33t, 38
caregiver-​focused transition to preparation phase, eye movement
adulthood interventions, 36 desensitization and reprocessing
goal-​planning transition to adulthood therapy, 199, 201f
interventions, 36–​37 preventative strategies, in positive
involvement in dialectical behavior behavioural support model, 96
therapy, 159, 161 primary emotions, 137, 141–​43
experiences of psychological therapy as proactive strategies, in positive behavioural
an autistic person, 12, 14–​15 support model, 96, 100–​1
PBS. See positive behavioral support processed memories, 193
personality disorder (PD), 165, 166–​67, processing phase, eye movement
168–​69, 171–​74 desensitization and reprocessing
personalized vocational assessment, in therapy, 193, 199–​203
PS \+​ASD, 69t professional social skills module,
person-​first language, 3 T-​STEP, 42
perspective taking, 83, 83t Program for the Education and
See also specific therapy types Enrichment of Relationship Skills for
pharmacological interventions Young Adults (PEERS-​YA), 84–​86
case study, 246–​47 Project REACH (City University of
challenges in, 245–​46 New York), 56
co-​occurring conditions, 237–​41, Project Search plus ASD Supports
238t, 240t (PS \+​ASD) intervention
general discussion, 247 for adults with high support needs,
indications for, 235 67–​70, 69t
initiating, 236 overview, 64–​65
medications for co-​occurring as recommended intervention, 67, 68t
conditions, 241–​44 propranolol, 238t, 245
other medications used for adults with psychiatric disorders co-​occurring
autism, 245 with autism
overview, 234–​35 in assessment of social
patients’ and clients’ performance, 81–​82
perspectives, 236–​37 and dialectical behavior therapy, 151
phobias, 197–​203 effectiveness of pharmacotherapy
polypharmacy, 234, 245–​46, 247 for, 235
positive behavioral interventions and effect on employment, 66
supports (PBIS), 96–​97 emotion-​focused therapies
positive behavioral support (PBS) targeting, 136
case study, 98–​102 initiating pharmacotherapy for, 236
challenging behavior and autism, 93–​94 medications for, 238t, 241–​44
framework approach, 95 overview, 2–​3
273

Index273

prevalence, 135, 237–​41, 240t relational context, in systemic approach,

taking into account in social skills 18–​19, 20
interventions, 86–​87 reprocessing tasks, in emotion-​focused
trajectory from childhood to therapy, 140–​41
adulthood, 237 resilience, in eye movement desensitization
psychoeducation See also specific and reprocessing therapy, 200f
therapy types resource imagery, eye movement
in cognitive behaviour therapy for desensitization and reprocessing
adults with autism, 112–​13 therapy, 198, 201f
in compassion-​focused therapy, 181t résumé development, in PS \+​ASD, 69t
creating in eye movement desensitization rights of offenders with autism, 223–​24
and reprocessing therapy, 201f risk assessment, 223
psychological factors, biosocial model of risk behavior, 150, 155–​57. See also
DBT, 154t suicidality
psychological therapies for adults with risperidone, 238t, 243
autism. See also specific therapy types
accommodating sensory safety behaviors, 257
sensitivities, 256–​57 schema mode, 166
barriers to accessibility, 253–​54 schema therapy (ST)
considerations for providers, 261–​62 for adults with autism, 167–​70
developing therapeutic alliance, 257–​58 case study, 170–​74
enhancing communication, 255–​56 general discussion, 174
experiences of autistic people, 7–​14 overview, 165–​66
experiences of parents of autistic people, schema therapy modified for autism
12, 14–​15 spectrum conditions (ST-​
general discussion, 15–​16, 262 MASC), 168–​69
general principles for adapting, 258–​59 schizophrenia spectrum disorders, 240t
measuring outcomes, 260–​61 schools. See SAFE intervention; transition
overview, 6–​7 to adulthood interventions;
tailoring intake and service university-​focused interventions
provision, 254–​55 sculpting with coins, in SAFE
psychopharmacotherapy. See intervention, 23, 24
pharmacological interventions SE. See supported employment
psychostimulants, 238t, 244 secondary emotions, in emotion-​focused
public stigma about mental health, 208 therapy, 137, 141
secondary strategies, in positive behavioral
quality of life (QoL) support model, 96, 101
as aim in positive behavioral support, selective serotonin reuptake inhibitors
94–​95, 98–​99 (SSRIs), 238t, 241–​42, 246–​47
dialectical behavior therapy goals, 160 self-​advocacy counseling, 33t
questionnaires, 260–​61 self-​compassion, 177, 178
quetiapine, 238t self-​criticism, 178–​79
self-​determination, 35
radical genuineness, 161 self-​help groups, 211–​14
ramelteon, 238t self-​management (SM), in T-​STEP, 40t
reactive strategies, in positive behavioral self-​monitoring, in dialectical behavior
support model, 96, 101–​2 therapy, 152
reinforcement (R), in T-​STEP, 40t self-​report questionnaires, 260–​61
274

274 Index

self-​soothing strategies, 181t, 199 case studies, 85–​87

self-​stigma, 208 evidence-​based group
sensory sensitivities interventions, 83–​85
accommodating, 255, 256–​57 future directions, 88
adapting group-​based interventions general discussion, 88–​89
for, 209–​10 individual work of social skills and
effect on employment, 66 techniques, 85
and positive behavioral support, 101 overview, 79–​80
experiences of psychological therapy as social skills construct, 80
an autistic person, 13–​14 techniques, 82–​83, 83t
serotonergic agents, 238t, 241–​43 underserved populations, 87–​88
serotonin noradrenaline reuptake soothing system, 177f, 177–​78
inhibitors (SNRIs), 238t, 242 special interests, as source for eye
serotonin transporter (SERT), 241 movement desensitization and
sertraline, 238t reprocessing therapist, 198
service gap, 21–​22 speech and language therapy
service provision, tailoring for persons (SALT), 99–​100
with autism, 254–​55 SPELL guidelines, 224–​25
sex offender treatment programs, 225 ST. See schema therapy
sexual orientation, and social skills stakeholder quality of life, as aim in
interventions, 87–​88 PBS, 94–​95
shame-​based difficulties in people with Stepped Transition in Education Program
autism, 178–​79 for Students with ASD (STEPS),
shutdowns, in SAFE intervention, 23 37, 52–​54
Simon Frasier University, 54–​55 stigma, relevance to group
skills groups, in dialectical behavior psychotherapy, 207–​8
therapy, 150, 157, 158t stimulants, 238t, 244
SNRIs (serotonin noradrenaline reuptake strength(s)
inhibitors), 238t, 242 in compassion-​focused therapy, 181t
social anxiety, 81–​82, 86–​87, 171–​74 in eye movement desensitization and
social cognition, 83, 83t reprocessing therapy, 200f
social factors, biosocial model of dialectal in workplace, 66–​67
behavior therapy, 154t stress
social functioning, in individuals with mindfulness-​based stress reduction,
autism, 135, 167 122–​23, 124, 129–​31
social groups, 211–​14 in transition to adulthood
social narratives (SN), in T-​STEP, 40t interventions, 34–​35
social skills structured approaches, suitability
assessment of, 80–​82, 81f of, 15–​16
construct of, 80 students, transition to adulthood
developing in compassion-​focused interventions focused on, 37–​41,
therapy, 181t 39t, 40t, See also SAFE intervention;
group-​based interventions focused transition to adulthood interventions;
on, 211 university-​focused interventions
in transition to adulthood substance use, 240t
interventions, 34 suicidality, 150, 152–​53, 155–​57, 240
social skills interventions supported employment (SE)
assessment of social performance, for adults with high support needs, 70
80–​82, 81f as recommended intervention, 67, 68t
275

Index275

SwiS intervention. See SAFE with Schools threat system, 177f, 177–​78
intervention three-​systems model, 177f, 177–​78, 181t
systematic instruction, in PS \+​ASD, 69t time management module, T-​STEP, 42
systemic autism-​related family enabling traditional medication nomenclature,
intervention. See SAFE intervention 236–​37, 241
systemic therapy training
examples, 20f, 20–​22 autism awareness, 224–​25, 229–​30, 262
general discussion, 28 mindfulness-​based interventions, 123
overview, 18–​20 Transitioning Together program, 36
SAFE intervention, 22–​26, 24f, 25f transition to adulthood interventions.
SAFE with Schools intervention, 26–​28, 27f See also employment-​focused
interventions; university-​focused
targeted support, in positive behavioral interventions
support model, 97 autism-​specific challenges
task analysis (TA), in T-​STEP, 40t targeted, 33–​36
TEACCH School Transition to Employment caregiver-​focused interventions, 36
and Postsecondary Education Program case study, 41–​43
(T-​STEP), 38–​43, 39t, 40t, 59 goal-​planning interventions, 36–​37
teachers, in SAFE with Schools history of transition services, 31–​33
intervention, 26–​28, 27f overview, 31
technology, in social skills student-​focused interventions, 37–​41,
interventions, 88 39t, 40t
technology supports for employment, 67, transition to adult services, in PS \+​
68t, 73 ASD, 69t
telephone coaching, in dialectical behavior trauma. See also eye movement
therapy, 150, 159, 160t desensitization and reprocessing
therapeutic alliance/​relationship See therapy
psychological therapies for adults autism and, 194, 195f
with autism; specific therapy types experiences of, working with, 138–​43,
adaptations/​modifications to cognitive 139f
behavior therapy for adults with trauma-​focused cognitive behavior
autism, 110 therapy, 10
developing, 257–​58 trazodone, 238t, 243
in dialectical behavior therapy, 160, 161 treatment fidelity, 261–​62
in eye movement desensitization and tricyclic antidepressants (TCAs),
reprocessing therapy, 199, 201f 238t, 242
role in effectiveness of therapy, ensuring typical antipsychotics, 238t, 243
accessible and acceptable service
delivery for adults with autism unhelpful thinking styles, 107–​8
in schema therapy, 166, 168–​69 universal support, in positive behavioral
therapist consult, in dialectical behavior support model, 97
therapy, 150, 160t, 161 university-​focused interventions
therapists. See also psychological therapies case study, 56–​57
for adults with autism; specific general discussion, 57–​59
therapies; therapeutic alliance/​ overview, 50–​51
relationship supports while in college, 53–​56
therapy-​interfering behaviors, transition into college, 52–​53
transparency around in dialectal University of Massachusetts (UMass)
behavior therapy, 159–​60 Lowell, 52, 54, 56–​58
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276 Index

valproate, 238t, 244 wisdom, in compassion-​focused

venlafaxine, 238t, 242 therapy, 181t
video modeling (VM), in T-​STEP, 40t women on spectrum, 87–​88
Vipassana meditation, 121–​22 work-​based learning experiences, 33t,
virtual reality See also employment-​focused
in employment-​focused interventions
interventions, 73 Workforce Innovation and Opportunity
in social skills interventions, 88 Act (WIOA), 32–​33, 33t, 38, 64
visual supports (VS), in T-​STEP, 40t workplace readiness training, 33t
vocational assessment, in
PS \+​ASD, 69t York University, 55
vocational rehabilitation (VR) services young adults with autism (YAA), 51.
for adults with lower support See also employment-​focused
needs, 73–​74 interventions; transition to adulthood
overview, 32–​33 interventions; university-​focused
as recommended intervention, 67, 68t interventions
Volunteer Advocacy Program-​Transition
(VAP-​T) intervention, 36 zolpidem, 238t
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