Administration and

Technical Report
National Guideline
For the assessment and diagnosis of autism in Australia

PUBLISHED 2018 UPDATED 2023

DRAFT UPDATED GUIDELINE FOR PUBLIC CONSULTATION

Guideline Development Group
Gary Allen
Griffith University
James Best
Independent General Practitioner
Nicole Dargue
Griffith University
Valsamma Eapen
University of New South Wales
Kiah Evans
University of Western Australia
Will Foster
Independent Community Member
Emma Goodall (Co-Chair)
Griffith University
Emma Hinze
Griffith University
Mandira Hiremath
Western Health
Wenn Lawson
Curtin University, Western Australia
Rhylee Sulek
Griffith University
Samarra Toby
Independent General Practitioner
David Trembath (Co-chair)
Griffith University | CliniKids, Telethon Kids Institute
Kandice Varcin
Griffith University | CliniKids, Telethon Kids Institute
Hannah Waddington
Victoria University of Wellington
Andrew Whitehouse
CliniKids, Telethon Kids Institute | The University of Western Australia | Autism CRC
Rachelle Wicks
Griffith University

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Copyright and disclaimer
The report has been published by Autism CRC to assist public knowledge and discussion to
improve the outcomes for autistic people through end-user driven research. General use of
any or all of this information in the report should give due acknowledgement to its source.
You should seek independent professional, technical or legal (as required) advice before
acting on any information contained in this report. Autism CRC makes no warranties or
assurances with respect to this report. Autism CRC and all persons associated with it
exclude all liability (including liability for negligence) in relation to any opinion, advice or
information contained in this report or for any consequences arising from the use of such
opinion, advice or information. Copyright in this Guideline and all the information it contains
vests in Autism CRC.

Citing this Guideline

This is an updated version of the original Guideline published in 2018.
Citation for updated Guideline: Goodall, E., Dargue, N., Hinze, E., Sulek, R., Varcin, K.,
Waddington, H., Whitehouse, A. J. O., Wicks, R., Allen, G., Best, J., Eapen, V. Evans, K.,
Hiremath, M, Hinze, W., Lawson, W., Toby, S., & Trembath, D. (2023). A National Guideline
for the Assessment and Diagnosis of Autism in Australia: 2023 Update. Autism CRC.
Brisbane
Citation for original Guideline: Whitehouse AJO, Evans K, Eapen V, Wray J. A national
guideline for the assessment and diagnosis of autism spectrum disorders in Australia.
Cooperative Research Centre for Living with Autism, Brisbane, 2018.

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Contents
National Guideline for the Assessment and Diagnosis of Autism in Australia .............. 0

Acknowledgements ...................................................................................................................4

Common abbreviations .............................................................................................................5

1. Introduction ........................................................................................................................6

2. Project Administration ......................................................................................................7

3. Guideline Update Methodology .................................................................................. 23

4. Recent evidence in relation to assessment and diagnosis for autism: An

umbrella review .............................................................................................................. 33

5. Community Consultation: Online Survey................................................................... 47

6. Community Consultation: Focus Groups ................................................................... 67

7. References........................................................................................................................77

8. Appendices ..................................................................................................................... 79

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Acknowledgements
The Guideline Development Group warmly acknowledges the following people who have
contributed to the development of the Guideline.

Autistic people, families, and community

We warmly acknowledge and thank all members of the autistic and autism communities
who have so generously shared their experiences, insights, views, and expertise to inform
the original, and update of, this Guideline. This includes participation in the original studies
included in the systematic reviews undertaken as part of the development and update,
participating in the community consultation activities, and providing feedback on draft
versions of the Guideline.

Original Guideline Development Group

We warmly acknowledge the efforts of the members of the Guideline Development Group
that was responsible for developing the original Guideline in 2018, including the Research
Executive Committee – Andrew Whitehouse, Kiah Evans, Valsamma Eapen, Margot Prior,
and John Wray. We extend this acknowledgement to the many people who supported their
work, and who are identified in the original Guideline document.

Research Support
We warmly acknowledge and thank Veronica Frewer (Griffith University) who provided
project coordination support and contributed to the research activities, along with Katie
Brooker (University of Queensland), Briohny Dempsey (Telethon Kids Institute), Amy
Giesberts (University of Queensland), and Libby Groves (Griffith University) who supported
the research activities.

Reference Group
We warmly acknowledge and thank the members of the Reference Group, each of whom
represented an organisation that is relevant to assessment and diagnosis of autism in
Australia. The names of all members of the Reference Group, and the organisations they
represent are included in the Guideline.

Further Assistance
We warmly acknowledge and thank the following people who provided additional
assistance in updating the Guideline. Justina Sparks (Telethon Kids Institute) and Felicity
Rose (Telethon Kids Institute) provided expert input regarding current, and planned,
Guideline implementation activities. The following people at Autism CRC contributed to
sharing information with the community about the Guideline development process and

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preparing the documents (graphic design, copyediting): Cally Jackson, Jason Kotzur, Darcy
Maguire, Braeden Monnier, and Sally Vidler.

Common abbreviations
Abbreviation Full term

DRWG Draft Recommendations Working Group

DSM-5 Diagnostic and Statistical Manual of Mental Disorders, Fifth edition

EtD Evidence to Decision

GDG Guideline Development Group

GRADE Grading of Recommendations Assessment, Development and

Evaluation

NDIS National Disability Insurance Scheme

NHMRC National Health and Medical Research Council

PICO Population-Comparison-Intervention-Outcome framework

PRISMA Preferred Reporting Items for Systematic Reviews and Meta-Analyses

SR Systematic Review

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1. Introduction
This chapter outlines the purpose and contents of this report.

1.1 Purpose of this report

The purpose of this report is to outline the administrative aspects of the process for
updating the 2018 Guideline and includes a detailed summary of the methods used.
This report acknowledges, but does not repeat, the information contained in the Guideline
and supporting documents (including the Administration and Technical Report) for the
original 2018 release of the National Guideline for the Assessment and Diagnosis of Autism
Spectrum Disorders in Australia (Whitehouse et al., 2018a, b).

1.2 Overview of information presented

This report comprises the following chapters:
1. Introduction
2. Project Administration. This chapter provides a summary of the Guideline questions,
the people involved in its development, project governance, and the Public
Consultation process.
3. Research Methodology. This chapter provides a summary of the systematic process
used to move from Guideline questions to the collection and synthesis of evidence
from a variety of sources, through to the formulation of recommendations and the
production of the Guideline and associated documents.
4. Recent evidence in relation to assessment and diagnosis for autism: An umbrella
review. This chapter presents the aims, method, and results of this umbrella review
(review of reviews) regarding the following aspects of assessment and diagnosis for
autism: (a) existing guidance; (b) clinical tools and processes; (c) considerations
regarding personal and environmental factors; and (d) experiences of the autistic and
autism communities.
5. Community Consultation: Online Survey. This chapter presents the aims, method,
and results of this study seeking the views of all members of the autistic and autism
communities.
6. Community Consultation: Focus Groups. This chapter presents the study aims,
method, and results of this study seeking the views and experiences of autistic
people, family members, and practitioners.

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2. Project Administration
2.1 Chapter overview
This chapter provides a summary of how the Guideline update project was administered. It
begins with a statement of the purpose of the Guideline, scope, and target users to provide
context for readers, drawing on the same information presented in the Draft updated
Guideline document. This chapter also includes a summary of the people involved in the
Guideline update process and project governance.

2.2 Guideline Purpose and Objectives

This Guideline was developed to support clinicians involved in clinical assessment that may
result in a diagnosis of autism spectrum disorder (ASD) according to the Diagnostic and
Statistical Manual of Mental Disorders which is currently in its 5th edition (DSM-5-TR;
American Psychiatric Association, 2022) and the World Health Organization’s International
Statistical Classification of Diseases and Related Health Problems, which is currently in its
11th edition (ICD-11; World Health Organization, 2019). The specific objectives were to
develop a Guideline that:
1. Describes a rigorous framework for accurately determining whether an individual
meets the criteria for a clinical diagnosis of autism.
2. Outlines a comprehensive approach to identify related support needs.
3. Contains sufficient flexibility to apply to the assessment of a child, adolescent or
adult of any age, gender, cultural or language background, communication or
intellectual capacity, and medical complexity, living anywhere in Australia.
4. Describes a feasible process for clinical service providers to administer across the
full breadth of community settings in Australia, including public and private
healthcare settings.
5. Meets the needs and expectations of individuals being assessed and their
caregivers.

2.3 Scope
The Guideline is focused on assessment that is conducted where a clinical diagnosis of
autism is being considered. The process includes making a referral, Assessment of
Functioning, Medical Evaluation, and Diagnostic Evaluation. The scope of the Guideline
update – which is unchanged from the original Guideline - was determined prior to the
commencement of the research and community consultation activities, and is summarised
in Table 2.1.

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Table 2.1. The scope of the Guideline.

Aspect In Scope Out of Scope

Recipients Children, young people, and adults of all Children, young people, and
of services ages, for whom a clinical diagnosis of adults not meeting this
autism may be relevant. criterion.

Focus of Assessment where a diagnosis of autism Assessment where a diagnosis

assessment is being considered. This includes of autism is not being
assessment of individual characteristics, considered, or that focuses
strengths, and supports needs, whether solely on goal setting and/or
or not the assessment leads to a support planning.
diagnostic evaluation and decision.

Outcomes Sharing and documentation of findings, The provision of supports

of as well as recommendations for following assessment and
assessment supports where relevant. diagnosis, irrespective of
whether a diagnosis of autism
was given.

In presenting the scope, two considerations are highlighted:

1. People access medical and allied health assessments for a variety of reasons. For
example, a person may seek an assessment if they have a difference or delay in
development, are experiencing restrictions and/or barriers in life activities, and/or
may have a diagnosable condition. A person may also access an assessment to
better understand their experience of the world, but not be seeking a clinical
diagnosis. In each case, the practitioner would work within their scope of practice to
meet the client’s needs. The Guideline, rather than attempt to account for all possible
reasons for assessment, and provide Recommendations for all aspects of practice,
focuses specifically on clinical diagnosis of autism.
2. It is critical that an assessment for autism takes place in the context of a broader
neurodevelopmental and behavioural assessment. This Guideline is intended to
operate within the assessment processes applicable for children, adolescents, and
adults presenting with characteristics of a broad range of neurodevelopmental
conditions.

2.4 Target users

The primary target users of this Guideline are Australian practitioners who conduct
assessments that may result in a clinical diagnosis of autism.
Secondary target users of this Guideline include the following groups:

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 1. Individuals who have characteristics that may be explained by autism diagnosis, as
well as others (e.g., partners, family) can use this Guideline to understand how to
initiate, and what to expect from, assessment for autism.
2. Australian medical, nursing, allied health, and education professionals and
organisations who work with children, young people, and/or adults who show
characteristics of autism can use the Guideline to know when and how to make a
referral for autism assessment.
3. Australian medical, nursing, allied health, and education professionals and
organisations who work with autistic people can use this Guideline to understand
what assessment should involve to ensure recommendations are implemented and
duplication of services is avoided.
4. Australian training providers, including peak bodies and tertiary institutions, can use
this Guideline to tailor educational and clinical resources, courses, and qualifications
to ensure participants achieve the learning outcomes required to contribute to
assessment for autism, where doing so will be within their scope of practice and
consistent with Guideline Recommendations.
5. Australian funding bodies can use this Guideline to align resource allocation with the
recommended process for assessment and diagnosis of autism.

2.5 Guideline funding

The Guideline was developed (2018) by Autism CRC with support from the National
Disability Insurance Agency, including funding to support the coordination of the project (by
Dr Kiah Evans), for the public consultation activities and for an honorarium to the Steering
Committee members. The authors who led the original release - Andrew Whitehouse,
Valsamma Eapen, Margot Prior and John Wray - received no personal financial or other
remuneration for their involvement in the project.
As part of NHMRC methodological review, they will assess whether funding source for
dissemination and implementation has been identified. David Trembath (Griffith University;
Telethon Kids Institute) and Emma Goodall (Griffith University) were appointed Co-chairs of
the Guideline Development Group, and Griffith University and Telethon Kids Institute
received funding from Autism CRC to support this work. David’s contributions were in-kind,
with funding used to employ Emma Goodall and research fellows/assistants to support the
work, to support community consultation activities, and to pay honoraria to the GDG
members.

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2.6 Process for ensuring editorial independence from funders
The GDG had complete editorial independence from Autism CRC in updating the Guideline,
with each entity having clearly defined roles and responsibilities. In chronological order, the
mechanisms to ensure editorial independence included:
Conceptualisation: The GDG responsible for the 2018 release of the Guideline
recommended that it be updated within 5 years, consistent with NHMRC requirements.
Commissioning: Autism CRC released a call for applications for funding to lead the update
of the Guideline in 2022. The call was open to all Autism CRC member organisations. David
Trembath led an application that was successful. Autism CRC invited David Trembath and
Emma Goodall to Co-chair the update of the Guideline. David Trembath and Emma Goodall
consulted with Autism CRC regarding aims, scope, and representation, but retained
complete independence in all aspects of the proposal.
Funding agreements: Autism CRC engaged Griffith University and project partners involved
in the update (Telethon Kids Institute, University of Queensland, Victoria University of
Wellington) via formal funding agreements. The funding agreement stipulated that each
party would ensure that research was conducted in accordance with the Australian Code
for the Responsible Conduct of Research (National Health and Medical Research Council
[NHMRC], 2018), which highlights the importance of honesty, rigor, and transparency: all of
which rely on editorial independence.
Conduct: The GDG were responsible for all aspects of project design and delivery. Autism
CRC involvement was limited to (a) receiving updates on progress towards agreed project
milestones in accordance with the funding agreements and (b) facilitating the community
consultation through sharing information (e.g., overview of activities, invitations to
participate) via the Autism CRC website and database, and via social media. The GDG were
responsible for drafting the information that Autism CRC shared with the community. All
research activities were approved by the Griffith University Human Research Ethics
Committee and implemented using Griffith University research infrastructure (e.g., Microsoft
Teams for focus groups, REDCap for online surveys). Autism CRC was not involved in
evidence synthesis nor formulation or refinement of the recommendations.
External consultation: The GDG were responsible for all consultation regarding the
contents of the Guideline, including liaising with and incorporating feedback from the
Reference Group.
Draft Guideline: The GDG were responsible for drafting the Guideline. Autism CRC had
access to a copy of the Draft Guideline as it was developed to assist with formatting and
graphic design. Autism CRC had authority to make changes to the formatting (e.g.,
organisation branding) and phrasing (e.g., in order to prepare plain language summaries in
consultation with the GDG and to improve accessibility) but did not have authority to make
changes to the meaning of any statement or recommendation in the Guideline.

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2.7 Guideline Development Group
The Guideline Development Group was established in accordance with the NHMRC (2011)
requirements to lead the research and community consultation process.

Terms of Reference
The Terms of Reference are presented in Appendix 2.1 and include the following
information about the project:
• Background.
• Purpose of the Guideline Development Group.
• Anticipated timeline.
• Membership of the Guideline Development Group.
• Appointment of Chair.
• Responsibilities of Project Team Members.
• Meetings.
• Code of conduct for the Project Team.
• Reporting.
The Terms of Reference were signed by each GDG member. Meetings were held monthly
from October 2022 to March 2023, and will continue to June 2023.

Recruitment
The members of the GDG were identified and appointed via a three-stage process.
• In the first stage, the Co-chairs identified a range of perspectives that were critical to
updating the Guideline. These perspectives included lived expertise (autistic people,
family members), clinical expertise (medical and allied health), expertise in human
ethics, and the lived expertise of one or more Aboriginal and/or Torres Strait Islander
person/s. The Co-chairs also identified research expertise that would be relevant,
including in relation to co-designed research, systematic reviews, community
consultation, and Guideline development. Finally, the Co-chairs considered the need
for continuity from the 2018 release of the Guideline through the update, to ensure
the accurate interpretation of the original context, questions, evidence, and
Recommendations.
• In the second stage, the Co-chairs identified people who had knowledge, skills, and
experience relevant to each of these required perspectives, and distributed
invitations via email. Consideration was given to ensuring diversity within the GDG.
The email included an introduction to the project and Terms of Reference. The Co-
chairs made themselves available to meet with invitees to discuss the Terms of
Reference.
• In the third stage, the invitees returned the signed Terms of Reference to confirm
their role within the GDG.

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Members
The members of the GDG, including name, position, affiliation, role, and expertise are
presented in Table 2.2.
Table 2.2. Members of the Guideline Development Group.

Name Position, role, and expertise

Mr Gary Gary Allen is the Senior Policy Officer Human Research Ethics and
Allen Research Integrity at Griffith University. Gary has worked in the human
research ethics area since 1997, working with a number of research
institutions, state and federal departments, private companies and
research ethics committees internationally. He also has a degree in
education and a professional doctorate in social sciences. Gary brings
extensive experience in regards to the national and international
governance of ethical conduct in research.

Dr James Dr James Best is a General Practitioner and Chair of the Child and Young
Best Person’s Health, Faculty of Special Interests Group, within the Royal
Australian College of General Practitioners. He brings experience working
with children and families in the areas of behaviour, parenting and autism,
and is extensively published in medical and mainstream publications on
these and other child health topics.

Dr Nicole Dr Nicole Dargue is a Lecturer within the Autism Centre of Excellence,

Dargue School of Education and Professional Studies at Griffith University. Her
research interests include factors impacting learning and communication
in autistic individuals, with a focus on nonverbal communication including
gestures. She is an accredited Clinical Neuropsychologist who brings
experience working with autistic individuals of all ages when navigating
the diagnostic process.

Prof Professor Valsamma Eapen is the Chair of Infant, Child and Adolescent
Valsamma Psychiatry at the University of New South Wales. An internationally-
Eapen recognised child psychiatrist and researcher, Valsamma’s expertise
combines extensive experience in childhood mental health and
developmental disorders from a clinical and basic science research
perspective.

Dr Kiah Dr Kiah Evans coordinated the development of the first Guideline from
Evans 2016 to 2018. She has held leadership roles in multiple research projects
over the past six years that have focussed on exploring the perspectives
of autistic adults, caregivers, clinicians and other key stakeholders in
relation to assessment of functioning and diagnostic processes related to
autism and other neurodevelopmental conditions. This included a large
program of research to investigate the psychometric properties of
existing assessment of functioning measures and supervision of doctoral
research projects to develop new measures based on the ICF. Kiah co-
led community consultation to evaluate the comparable guideline in New
Zealand and was an international consultant for the development of a

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 comparable guideline in Vietnam. She has qualifications and teaching
experience in the field of health professions education.

Dr Emma Dr Emma Goodall is an autistic author, advocate, qualified meditation and

Goodall mindfulness teacher and adjunct research fellow at the University of
Southern Queensland. She is the Manager for Content & Research for
(Co-chair) Positive Partnerships and also runs Healthy Possibilities, a consultancy
offering personal life coaching alongside autism specific continuing
professional development for educators and families and National
Disability Insurance Scheme (NDIS) services (many with a link to
interoception). Emma speaks widely on the topic of interoception and the
role mindful body awareness plays in emotional regulation.
Dr Emma Goodall was Co-chair of the Guideline Development Group for
this Guideline.

Ms Emma Emma Hinze is a PhD candidate within the School of Applied Psychology
Hinze at Griffith University. She brings lived experience as a parent and
caregiver to her autistic son, as well as knowledge gained through her
research and work with autistic adolescents and adults.

Mr Will Will Foster is an autistic adult who enjoys spending time with family and
Foster friends, building various Lego projects, engaging in the community, and
enjoys making puppets, cooking, and exercising.

Dr Mandira Dr Mandira Hiremath is a general paediatrician at Western Health, is a

Hiremath board director for the Neurodevelopmental and Behavioural Paediatric
Society of Australasia and has also completed further studies in public
health. She has extensive clinical experience in the diagnosis of autism
spectrum disorder in children and additionally supporting children and
their families through a range of mental health and developmental
concerns.

Dr Wenn Dr Wenn Lawson is an Adjunct Associate Professor at Curtin University,

Lawson WA. Wenn is a Senior Researcher in the area of autism and supports PhD
students thought supervision, works on various projects, and is a member
of the Curtin Autism Research Group (CARG).

Dr Rhylee Dr Rhylee Sulek is a Research Fellow within the School of Health

Sulek Sciences and Social Work, Griffith University and Honorary Research
Associate at CliniKids, Telethon Kids Institute. She brings experience in
working with young autistic children and their families when receiving
early supports and therapies, and the inclusion of key stakeholders in the
co-production of research.

Dr Samarra Dr Samarra Toby is a First Nations Medical Doctor who specialises in

Toby General Practice. Dr Toby has an interest in nutritional and environmental
medicine, aerospace medicine, medical ecology and First Nations
Translational Health Research.

A/Prof David David Trembath is an Associate Professor in Speech Pathology at the

Trembath Menzies Health Institute Queensland, Griffith University and Honorary
Research Fellow at CliniKids, Telethon Kids Institute. He brings over 20
(Co-chair) years of clinical-research experience working with autistic children and

13
 their families. David was Co-chair of the Guideline Development Group
responsible for developing the Autism CRC’s National Guideline for
supporting the learning, participation, and wellbeing of autistic children
and their families in Australia.
David was the Co-chair of the Guideline Development Group for this
Guideline update.

Dr Kandice Dr Kandice Varcin is a Research Fellow at the Menzies Health Institute

Varcin Queensland, Griffith University and Honorary Research Associate at
CliniKids, Telethon Kids Institute. She is also a registered psychologist
who brings experience and expertise in research focused on autism,
early development and the evaluation of therapies and supports for
young children and their families.

Dr Hannah Dr Hannah Waddington is a Senior Lecturer at Victoria University of

Waddington Wellington and the Clinic Lead of the Victoria University of Wellington
Autism clinic. She is also a practicing educational psychologist who brings
experience in provision of early support to autistic children and their
families.

Prof Andrew Andrew Whitehouse is a Speech Pathologist and Angela Wright Bennett
Whitehouse Professor of Autism at the Telethon Kids Institute and the University of
Western Australia. Andrew is also the Director of CliniKids, a clinical
(Co-chair) research centre of excellence for autistic children, and is the Autism
CRC's Research Strategy Director. He brings over 20 years’ clinical
research experience in working with autistic children and their families.
He also brings experience in Guideline development, having chaired the
development of the original version of the National Guideline for the
Assessment and Diagnosis of Autism in Australia, and co-chaired the
development of the National Guideline for supporting the learning,
participation, and wellbeing of autistic children and their families in
Australia.

Dr Rachelle Dr Rachelle Wicks is an autistic research fellow within Griffith University’s

Wicks Autism Centre of Excellence. She brings lived experience as a late-
diagnosed woman and professional experience in early literacy and
assessment for young autistic children, as well as knowledge of the
varied perspectives and needs of individuals within the autistic and
autism communities gained through her research and work with autistic
children, their families, and service providers.

Roles within the GDG

All members of the GDG contributed to decision-making in relation to the design,
development, and delivery of the Guideline and associated documents. This included
reviewing materials, engaging in discussion at monthly GDG meetings, and endorsing the
final versions of these documents.
Within the GDG, nine members were responsible for developing and progressing the core
research and development activities, including designing and completing systematic
reviews, community consultation activities, and the Evidence to Decision (EtD) process

14
(described in subsequent chapters): Nicole Dargue, Emma Goodall, Emma Hinze, Rhylee
Sulek, David Trembath, Kandice Varcin, Hannah Waddington, Andrew Whitehouse, and
Rachelle Wicks. Emma Goodall, Emma Hinze, Hannah Waddington, and Rachelle Wicks held
salaried positions, while Nicole Dargue, Rhylee Sulek, David Trembath, Kandice Varcin, and
Andrew Whitehouse made in-kind contributions. Each member contributed to all activities,
while taking leadership of one or more activities. Specifically, Nicole Dargue and Hannah
Waddington led the systematic review of existing guidelines. Rhylee Sulek led community
consultation involving the online survey and focus groups. Kandice Varcin led the public
consultation. Rachelle Wicks led coding of the qualitative data from community consultation,
and preparation of evidence summaries. Emma Hinze led coordination of the analysis of
qualitative data in systematic reviews and data collected during community consultation
activities.

Declaration of Interests
The following process was adopted to ensure the declaration and management of any
competing interests, in accordance with the NHMRC Guidelines for Guidelines (2016):

Develop a conflict-of-interest policy

The following information constitutes the conflict-of-interest policy used in the development
of the Guideline.

Determining if an interest is a conflict of interest

Members of the GDG who were directly responsible for the design and conduct of research
activities (Emma Goodall, Nicole Dargue, Emma Hinze, Rhylee Sulek, David Trembath,
Kandice Varcin, Hannah Waddington, Andrew Whitehouse, Rachelle Wicks) each disclosed
conflicts of interest using the International Committee of Medical Journal Editors (ICMJE)
Disclosure of Potential Conflicts of Interests form (https://journals.sagepub.com/pb-
assets/cmscontent/HPQ/coi_disclosure.pdf) at the outset of the project, and these forms
were made available to one another to review. No major conflicts of interest were identified.
All members of the GDG were required to complete the same form prior to having input into
the drafting of Guideline recommendations. GDG Co-chairs reviewed all forms and
identified processes that would be put in place if required (e.g., self-abstaining or asking
group member to abstain from one or more aspects of the guideline development process).

Appoint an independent chair

Autism CRC invited Emma Goodall and David Trembath to act as Co-chairs based on their
experience and demonstrated track record of co-designed and ethical research in related
projects that included the National Disability Insurance Agency commissioned synthesis of
evidence for non-pharmacological supports for autistic children and their families
(Whitehouse et al., 2020) and developed of the Autism CRC National Guideline for
supporting the learning, participation, and wellbeing of autistic children and their families in
Australia (Trembath et al., 2022). The Co-chairs had no financial interests relevant to update
the Guideline to declare.

15
Select development group candidates
As indicated above, members of the GDG were selected through a process that involved
the Co-chairs first identifying perspectives and expertise that are critical to the development
of the Guideline, and then inviting relevant people.

Disclose interests throughout development

All GDG and Reference Group members were required to declare any potential conflicts of
interest that arise during the guideline development process by (a) updating their form and
(b) notifying the Co-chairs at the start of the following meeting (standard agenda item). GDG
members were advised to notify the Co-chairs of any changes in their declarations, prior to
providing feedback on any documents outside of GDG meetings (e.g., feedback on the
Draft Guideline). The exceptions to this approach were members of the GDG directly
involved in day-to-day work on the Guideline (Emma Goodall, Nicole Dargue, Emma Hinze,
Rhylee Sulek, David Trembath, Kandice Varcin, Hannah Waddington, Andrew Whitehouse,
Rachelle Wicks) who were required to notify this same group of any new disclosures as they
arose and no later than the next weekly working group meeting.

Manage conflicts of interest

It was planned that conflicts arising would be managed according to recommendations in
the NHMRC Guidelines for Guidelines (2016) including members recusing themselves
and/or being excluded from aspects of the guideline development process, removing a
member from the GDG should a serious breach in relation to disclosures occur, and
refusing sponsorship where a conflict exists. All decisions were to have been discussed and
documented within the GDG and published in the technical manual that accompanies the
Guideline. It is noted that these actions have not been required during the update of the
Draft Guideline.

Publish declarations of interest in the Guideline

The declarations of interests for all GDG members are provided in Appendix 2.2.
Guideline Development Group meetings
The GDG met via videoconference on a monthly basis from October 2022 to March 2023.
Additional monthly meetings are scheduled for April, May, and June 2023. Each meeting
followed an agenda, focusing on (a) updates on Guideline activities and (b) discussion and
decision-making within the GDG. Minutes of each meeting, along with a rolling record of
actions arising and any supporting documents, were circulated between meetings.
The primary focus of each meeting was:
• October 2022: Introduction of members, project overview, discussion of GDG
functioning, and overview of current GDG priorities.
• November 2022: Progress report on community consultation and umbrella review,
discussion of timeline, and overview of the NHMRC and GRADE Evidence to
Decision process.

16
 • December 2022: Progress report on community consultation and umbrella review,
and discussion of Australian context and language choices.
• January 2023: Progress report on community consultation and umbrella review, and
discussion of method for analysing Expression through Art submissions
• February 2023: Update on method for analysing Expression through Art submissions
and reviewing draft updated Recommendations.
• March 2023: Review of Recommendations and Evidence to Decision Judgements.

2.8 Reference Group

To support its work in community consultation, the GDG formed a Reference Group,
comprising of representatives from organisations with members that play a critical role in
assessment and diagnosis of autism or support and reflect the views of autistic people and
family members; that represent Aboriginal and Torres Strait Islander Peoples, and represent
Culturally and Linguistically Diverse communities; or that were from a relevant Government
Department (Department of Social Services, Department of Health) or agency (National
Disability Insurance Agency). Terms of reference
• The Terms of Reference are presented in Appendix 2.3 and include:
• Background (to the project).
• Purpose (of the Guideline Development Group).
• Anticipated timeline for the project.
• Membership of the Reference Group.
• Appointment of Chair.
• Responsibilities of Project Team Members.
• Meetings.
• Code of conduct for the Project Team.
• Reporting.
The Terms of Reference were signed by each Reference Group member ahead of the first
of three meetings held during the Guideline development process in December 2022 and
March 2023. A further meeting is scheduled for June 2023.

Recruitment
The members of the Reference Group were identified and appointed via a three-stage
process.
• In the first stage, the Co-chairs identified a range of perspectives that were critical to
updating the Guideline. The Co-chairs also identified the need for representation of
Aboriginal and Torres Strait Islander Peoples, representation of culturally and

17
 linguistically diverse communities, and representation from the key Government
agency: the National Disability Insurance Agency.
• In the second stage, the Co-chairs identified organisations, peak bodies, and
agencies that are relevant to each of the aspects identified and sent an email
invitation to a representative (typically CEO) of each organisation, peak body, or
agency inviting their participation and requesting they nominate a representative to
attend Reference Group meetings. The email included an introduction to the project
and Terms of Reference. The Co-chairs made themselves available to meet with
invitees to discuss the Terms of Reference.
• In the third stage, the nominees returned the signed Terms of Reference to confirm
their role within the Reference Group.

Members
The members of the Reference Group are presented in Table 2.3.
Table 2.3. Members of the Reference Group.

Stakeholder group Organisation Representative Position

Autistic people Autistic Self Advocacy Cheryl Koch Board member

Network – Australia
and New Zealand

Family members Autism Awareness Nicole Hurley Head of fundraising

of autistic people Australia and partnerships

First Nations National Aboriginal Jess Styles Director, Programs

peoples Community Controlled
Health Organisation
(NACCHO)

Culturally and Australian Multicultural Daniel Coase Senior Advisor

linguistically Health Collaborative
diverse
communities

Focusing on Neurodevelopmental John Wray Member

health and Behavioural
Paediatrics Society of
Australasia

Focusing on Royal Australian Alison Palmer Member

health College of General
Practitioners

18
Focusing on Royal Australian and Matthew Sellen Member, RANZCP
health New Zealand Section of Psychiatry
Colleague of of Intellectual and
Psychiatrists Developmental
Disabilities

Focusing on Speech Pathology Amy Fitzpatrick Senior Advisor -

social- Australia Disability
communication
functioning

Focusing on Australian Kristy Nicola APA Paediatric

physical Physiotherapy National Group –
functioning Association Deputy Chair

Focusing on Australian Catriona Davis- APS President

cognitive Psychological Society McCabe
functioning and
mental health

Focusing on Occupational Therapy Gaynor Gray Divisional Manager

sensory Australia (QLD) Occupational
functioning and Therapy Australia
occupations

Focusing on rural National Rural Health Susanne Tegen Chief Executive

health Alliance

Representing Australian Autism Frances Member

service providers Alliance Scodellaro
(peak body)

Representing Australasian Society for Josephine Treasurer

researchers Autism Research Barbaro

Government Australian Government Susan Aitkin Improving Student

Department of Outcomes Division
Education

Government Department of Social Angela Warner Assistant Director,

Services Autism Policy Team,
Disability Support
Branch

19
 Government National Disability Sam Bennett General Manager
Insurance Agency Policy, Advice and
Research

Declared Interests
The process for declaring interests and managing conflicts of interest was the same as
outlined in relation to the GDG above. This included members completing declaration of
interests forms that will be published with the final version of the updated Guideline. Given
that the Reference Group did not input into the formation of the draft Recommendations,
some flexibility was given for members to complete their Declarations of Interest forms.

Reference Group Meetings

The Reference Group met via videoconference on two occasions (November 2022, March
2023) with a third meeting scheduled for June 2023. Each meeting followed an agenda,
focusing on (a) updates on Guideline activities and (b) discussion of these activities. Minutes
of each meeting, along with a rolling record of actions arising and any supporting
documents, were circulated between meetings.
The primary focus of each meeting was:
• November 2022: Introduction of members, project overview, confirming processes
for governance and communication, overview of methodology, and review of
proposed timeline.
• March 2022: Summary of progress towards update of the Guideline, including
research and community consultation activities, and review of upcoming stages of
Guideline development.

2.9 Other people who contributed to the Guideline update.

Table 2.4 presents the names, roles, expertise, and organisational affiliation of additional
people who contributed to the Guideline update.
Table 2.4. Additional contributors to the Guideline update.

Name Discipline/Expertise Organisation Role

Briohny Occupational therapy Telethon Kids Research assistant

Dempsey Institute

Veronica Speech pathology Griffith Research assistant

Frewer University

Libby Speech pathology Griffith Research assistant

Groves University

20
 Justina Guideline Telethon Kids Consulted in relation to current,
Sparks implementation Institute and planned future, Guideline
implementation activities.

Felicity Guideline Telethon Kids Consulted in relation to current,

Rose implementation Institute and planned future, Guideline
implementation activities.

Cally Marketing and Autism CRC Community engagement

Jackson Communications regarding Guideline

Jason Marketing and Autism CRC Community engagement

Kotzur Communications regarding Guideline

Darcy Marketing and Autism CRC Community engagement

Maguire Communications regarding Guideline

Braeden Marketing and Autism CRC Community engagement

Monnier Communications regarding Guideline

Sally Vidler Marketing and Autism CRC Community engagement

Communications regarding Guideline

2.10 Consumer representation

The following processes were used to ensure consumers (i.e., members of the autistic and
autism communities) were involved in the update of the Guideline.
Guideline Development Group: Multiple people with lived expertise of autism were invited
to be members of the GDG. Four members are autistic, 3 members are parents of autistic
children, and others have family members who are autistic.
Reference Group: Two organisations were specifically invited to join the Reference Group.
The Autistic Self Advocacy Network – Australia and New Zealand is run by and represents
autistic people. Autism Awareness Australia is run by and represents parents and other
family members of autistic people.
Community consultation activities: A series of research studies were conducted as part of
the Guideline update process to inform the recommendations. These were separate to the
Public Consultation on the Draft updated Guideline and were used to gather evidence to
inform the revising of recommendations. The activities included:
• Focus groups for autistic people, family members of autistic people, and
practitioners.
• An online community survey that was open to all members of the community
including autistic people, family members, practitioners and organisations.

21
2.11 Involvement of Aboriginal and Torres Strait Islander
Peoples and culturally and linguistically diverse
communities
For a Guideline to serve the needs of all Australians, it is critical that the guideline
development process includes proper consideration of issues relating to Aboriginal and
Torres Strait Islander Peoples and culturally and linguistically diverse communities. These
considerations include recognising the enduring impact of historical injustices,
discrimination, and marginalisation of Aboriginal and Torres Strait Islander Peoples; the
importance of understanding and embracing culturally-bound understandings of family
practices and disability; and the need to ensure that every Australian has access to
culturally-responsive and appropriate health and education services, delivered by people
with appropriate knowledge, skills, understanding, and experience. The GDG took the
following steps to ensure the Guideline Recommendations were responsive to these and
other considerations relevant to these peoples and communities. First, the Guideline
Development Group included Aboriginal representation. Second, the Reference Group
included representatives from the peak organisation serving the health of Aboriginal and
Torres Strait Islander Peoples: The National Aboriginal Community Controlled Health
Organisation (NACCHO).

22
3. Guideline Update Methodology
3.1 Introduction
The methodology and findings that contributed to the development of the original Guideline
are outlined in detail in the National Guideline for the Assessment and Diagnosis of Autism
Spectrum Disorders in Australia (2018) full Guideline document and the supporting
Administrative and Technical Report.
This report focuses on the methodology used to update the Guideline. This chapter focuses
on the application of the Grading of Recommendations, Assessment, Development and
Evaluations (GRADE) framework that was used to update the Guideline. The detailed
methodology and findings of each of the research activities completed as part of the
Guideline update process are presented in subsequent chapters (Chapters 4-6).

3.2 NHMRC Guidelines for Guidelines

At the time of the Guideline update, the NHMRC did not yet have published guidelines for
Guideline updates. As such, the Guideline update process adhered closely to the approach
described in the Guidelines for Guidelines handbook used for the development of
Guidelines (NHMRC, 2016).
The phases of updating the Guideline included planning, revising, and reviewing the
Guideline. The phases of implementing and further updating the Guideline will be outlined
in the final version of the updated Guideline. In adhering to the handbook, the Guideline
Development Process also met the NHMRC Standards for Guidelines:
• Standard 1 – Be relevant and useful for decision making
• Standard 2 – Be transparent
• Standard 3 – Be overseen by a guideline development group
• Standard 4 –Identify and manage conflicts of interest
• Standard 5 – Be focused on health and related outcomes
• Standard 6 – Be evidence informed
• Standard 7 – Make actionable recommendations
• Standard 8 – Be up-to-date
• Standard 9 – Be accessible

3.3 GRADE
GRADE provides a systematic approach for developing practice recommendations
(Schünemann et al., 2013). The process involves (a) identifying clinical questions, (b)
collecting relevant research evidence, (c) using the evidence to answer the clinical
questions, and (d) in doing so formulate recommendations. In determining the grade of
recommendations, the GDG must consider the certainty of evidence for the
recommendation, the benefits and risks, the values and preferences of the people whom
the recommendation will affect, resource implications, impact on health inequities,

23
acceptability to the people whom the recommendation will affect, and feasibility of
implementation. These steps, as they were applied in this Guideline update process, are
outlined below.

3.4 Guideline development process

Step 1: Establishing the Guideline Development Group (GDG)
Purpose: The GDG was responsible for reviewing and refining the guideline questions,
gathering updated evidence through a systematic review and community consultation, and
using the updated evidence, alongside the original evidence, to revise – and then grade the
strength of - recommendations using an Evidence to Decision (EtD) process. The GDG will
also be responsible for considering community feedback on the Draft updated Guideline
during the consultation period, making revisions if appropriate, and endorsing the final
version of the updated Guideline for public release.
Process: The process for determining the roles, and people who ultimately filled those
roles, is presented in Chapter 2. Briefly, it included three stages, the first of which was to
identify relevant perspectives to inform the Guideline development process, to identify
people who could contribute those perspectives, and then invite participation including
agreement with the Terms of Reference.
People involved: A detailed description of the seventeen-member GDG is provided in
Chapter 2. Briefly, among the 17-member group were autistic adults; parents and other
family members of autistic children, including individuals with complex support needs; an
Aboriginal person; a person with expertise in ethics and research integrity; practitioners
with experience across government and non-government sectors; and researchers with
expertise in the guideline development process, including community consultation.

Step 2: Revising Guideline questions

Purpose: Asking relevant questions is critical to the development and update of a useful
Guideline.
Process: The GDG reviewed questions that formed the basis of the original version of the
Guideline and considered whether any changes were required. In considering possible
changes, the GDG reflected on (a) whether the questions remained relevant, (b) if any new
questions should be added to reflect changes in the community and practice, and (c) if re-
wording and/or organisation of questions could improve readability and reduce repetition
within the Guideline. The updated Guideline questions were as follows:

24
Section Question

Guiding What guiding principles should be followed in the assessment and

principles diagnosis of autism?

Foundations of What should be the process for assessment and diagnosis of autism in
assessment the Australian context?

What knowledge, skills, training, support, and regulation are required

to conduct components of the Comprehensive Needs Assessment
and Diagnostic Evaluation?

What settings are appropriate for assessment?

How should information be collected in an assessment?

How should information be shared?

When should referral for health, education, disability, social, and/or

community supports be considered?

How should the quality and safety of the assessment and diagnostic
process be optimised?

Making a When should a referral for autism assessment be initiated?

referral for
assessment Who should initiate a referral for autism assessment?

What information should be collected?

What should be the outcome once a referral for assessment has been
considered?

Comprehensive When should an Assessment of Functioning be conducted?

Needs
Assessment Who should conduct an Assessment of Functioning?

What information should be collected as part of an Assessment of

Functioning?

What should be the outcomes of an Assessment of Functioning?

When should a Medical Evaluation be conducted?

Who should conduct a Medical Evaluation?

25
 What information should be collected in a Medical Evaluation?

What should be the outcomes of a Medical Evaluation?

Diagnostic When should a Diagnostic Evaluation be conducted?

Evaluation
Who should conduct a Diagnostic Evaluation?

What information should be collected in a Diagnostic Evaluation?

What information should be considered in making a diagnosis?

How should a diagnostic decision be made?

What should be the outcomes of a Diagnostic Evaluation?

Within GRADE, questions are typically asked using a consistent format that specifies the
population (P = population of interest), intervention (I = intervention/support/assessment that
is being trialled), comparison (C = the alternative to the intervention/support/assessment),
and outcome (O = the outcome of interest). Such questions should be relevant to the
community. For instance, a question that seeks to answer whether one type of assessment
is more effective than another in accurately diagnosing autism, could be framed as “In
people seeking an assessment for autism (Population), is Assessment A (Intervention) more
accurate than Assessment B (Comparison), in diagnosing autism (Outcome)?” To answer
this question, there must be sufficient studies involving the specific population, types of
assessments, and outcome of interest to enable a meta-analysis to be completed, which
involves quantitatively combining data from across studies. However, this situation is
uncommon in relation to research involving autistic people for several reasons including:
• Few or no studies available to answer questions that are most relevant to practice.
• Where studies are available, they vary in terms of the participant characteristics;
assessments examined; and how outcomes of interest are measured.
• Where studies are available, they also vary in terms of methodological quality
including the clear and complete reporting of data needed to complete meta-
analyses.
The challenge with using the Population, Intervention/Assessment, Comparison, Outcome
(PICO) format extends beyond consideration of whether empirical evidence is available to
answer a particular question. Two broader challenges that were particularly relevant to the
update of this Guideline were as follows:
• Many questions parents and practitioners want answered do not align with the PICO
format, such as “What guiding principles should be followed in the assessment and
diagnosis of autism?” Conceivably, if there were two or more studies comparing
different guiding principles used in the assessment and diagnosis of autism and the

26
 impact of these on client experience and diagnostic accuracy, it would be possible to
compare the approaches to see which was more appropriate. However, doing so
would rely on there being existing sets of guiding principles to compare, and then
there being sufficient empirical evidence to compare them. At the same time, taking
this approach would limit the answer to this question to consideration of just
principles that have been compared, whereas consulting the autistic and autism
communities is likely to yield far more diverse views and preferences in relation to
what constitutes appropriate guiding principles and how should they be selected.
• Related to the previous point, answering PICO questions relies on quantitative data.
Yet, when it comes to understanding the views and experiences of autistic people,
their families, and the broader autistic and autism communities, qualitative data are
just as important. Therefore, questions need to be asked in a way that allows people
to share a broad range of, at times differing, views and experiences.
Given these challenges and limitations with adopting the PICO format, the GDG elected to
formulate questions in a way that would prioritise their relevance to everyday practice.
Doing so was consistent with the NHMRC Standard 1 (Be relevant and useful for decision
making) to ensure Standard 7 (Make actionable recommendations) could be achieved. For
this same reason, the Recommendations included in the Guideline are consensus-based
recommendations, drawing on evidence from the research literature, combined with
evidence collected through detailed community consultation from the original Guideline
development and through the Guideline update process.
People involved: The questions were developed and endorsed by the GDG.

Step 3: Gathering evidence

Purpose: For a Guideline to be relevant it must be evidence-based. For the updated
Guideline, evidence-based refers to being consistent with an evidence-based practice
framework, that combines the best available research evidence, with evidence from clinical
practice, and the views and priorities of autistic people. The purpose of gathering new
evidence was to ensure that recommendations were relevant and/or could be revised in a
systematic way, consistent with GRADE, and reflecting multiple converging sources of
evidence.
Process: The GDG designed a series of research activities to gather recent, best available
evidence from the published research literature and from the community. This involved
undertaking a systematic review of recent published evidence as well as two community
consultation activities. Ethical approval for the consultation activities was granted by the
Griffith University Human Research Ethics Committee (2022/780).
The research activities were:
1. An umbrella review of recent evidence in relation to assessment and diagnosis of
autism (Chapter 4). This was a systematic review of systematic reviews that
examined evidence relating to: (a) existing guidance for assessment and diagnosis,
(ii) clinical tools and processes, (b) considerations regarding personal and
environmental factors, and (c) experiences of the autistic and autism communities.

27
 2. An online survey designed to understand experiences and current views and
preferences of the autistic and autism communities regarding assessment and
diagnosis of autism in Australia (presented in Chapter 5). The survey was open to all
members of the autistic and autism communities (including children).
3. A series of focus groups designed to provide an opportunity for autistic adults, family
members, and practitioners to reflect on and discuss their experiences, views and
preferences regarding assessment and diagnosis of autism in Australia (presented in
Chapter 6).
The research and consultation activities were designed such that, across the collective set
of activities, the GDG was able to collect evidence from all key stakeholders, including
autistic children and adults, as well as members of the broader autistic and autism
communities (i.e., organisations, support people, researchers, educators). The populations
represented by each evidence source are summarised in Table 3.1.
All evidence collected through the research and consultation activities was used to inform
the revision and update of recommendations through the Guideline.

Table 3.1. Sources of evidence and populations represented.

Sources of evidence Populations represented
(i.e., research activity)
Autistic Autistic Autistic Family Practitioner Organisations Other
children young adults members s community
people members

Systematic review of
recent evidence      
Online survey
      
Focus groups
  

People involved: The research activities were developed by the GDG and informed by the
research consultation activities undertaken as part of the development of (i) the original
version of the Guideline (Whitehouse et al., 2018a) and (ii) the National Guideline for
supporting autistic children and their families (Trembath et al., 2022). The day-to-day work
of gathering and synthesising evidence was undertaken by nine members of the GDG
(Nicole Dargue, Emma Goodall, Emma Hinze, Rhylee Sulek, David Trembath, Kandice
Varcin, Hannah Waddington, Andrew Whitehouse, Rachelle Wicks). The coding and analysis
of data was undertaken by these same nine members of the GDG, with additional research
support for qualitative data coding provided by Libby Groves, Veronica Frewer, Briohny
Dempsey, and Amy Giesberts.

28
Step 4: Reformatting the Guideline Text
The original Guideline was developed according to NHMRC Guidelines for Guidelines
handbook (2016) but did not use the GRADE method for moving from evidence to
Recommendations. To ensure that GRADE could be applied when updating the Guideline,
some reconfiguring of Recommendations and accompanying text was required, prior to
applying GRADE. The process of reconfiguring the text also provided an opportunity to
align formatting with the approach taken with Autism CRC’s National Guideline for
supporting the learning, participation, and wellbeing of autistic children and their families in
Australia (2022). Aligning the formatting in this way should help practitioners in moving
seamlessly from one Guideline to the other when working with autistic children and will lay
the foundation for similar consistency for other Guidelines in the future.
The process of reconfiguring the Recommendations and accompanying text involved five
steps. First, all text from the original Guideline was transferred to a Microsoft Excel
spreadsheet and organised according to the original Guideline questions. Second, this text
was re-organised according to the updated Guideline questions. Third, the
Recommendations and accompanying text related to each of the updated Guideline
questions was reviewed, individually and as a group. Fourth, the text was reconfigured into
a set of revised Recommendations, Good Practice Points, and if relevant accompanying
text. At this point, no changes in the scope or meaning of the Recommendations was
allowed, only changes to the way the information was presented. Fifth, the Chair of the
original Guideline Development Group (Andrew Whitehouse) reviewed the original and
reconfigured text to ensure continuity in scope and meaning of Recommendations between
the original Guideline and updated draft Recommendations, Good Practice Points, and
accompanying text.

Step 5: Moving from evidence to Recommendations

An iterative process, built around an Evidence to Decision (EtD) framework, was used to
move from evidence to recommendations (Alonso-Coello, Oxman et al., 2016; Alonso-
Coello, Schünemann, et al., 2016). The process was led within the GDG by a Draft
Recommendations Working Group (DRWG; Nicole Dargue, Emma Goodall, Emma Hinze,
Rhylee Sulek, David Trembath, Kandice Varcin, Hannah Waddington, Andrew Whitehouse,
Rachelle Wicks) with support from research staff (Veronica Frewer, Libby Groves) to analyse
data from the community consultation activities and review the draft updated
Recommendations in light of the evidence generated.

Evidence review and preparation of draft 1 of updated Recommendations

Members of DRWG and research staff reviewed the draft updated Recommendations
against evidence from the umbrella review and community consultation activities. In doing
so, they considered if each Recommendation should be retained in its original form, be
revised based on new evidence, or be removed based on new evidence. The team also
considered whether one or more new Recommendations should be added. Proposed edits,
along with the supporting evidence from the umbrella review and/or community
consultation were documented first in an excel spreadsheet that contained the evidence

29
summary for each Recommendation, and second in the draft updated Guideline. One co-
Chair reviewed the proposed edits and either endorsed them immediately or sought further
clarification and consensus with the team before endorsing. The second Co-chair and all
members of the DRWG reviewed the edits and any disagreements were discussed until
consensus was achieved.

Guideline Development Group review of Draft 1 of updated Recommendations

The DRWG shared the draft updated Recommendations and Good Practice Points with the
GDG. The GDG provided feedback at the monthly meeting and via suggestions in shared
documents.

Grade of Recommendation judgements and preparation of Draft 2 of updated

Recommendations
Members of the DRWG incorporated feedback provided by GDG members to further update
Recommendations and Good Practice Points. The DRWG also independently completed a
review and judgement of each Recommendation against the seven criteria required within
the GRADE Evidence to Decision framework (Alonso-Coello, Oxman et al., 2016; Alonso-
Coello, Schünemann, et al., 2016). The judgements related to certainty of evidence, benefits
and risks, values and preferences, resource implications, equity considerations,
acceptability, and feasibility. The judgements occurred over five rounds, with the first
involving independent review, followed by consensus review, and then review by the
broader GDG.
Based on the judgements, each Recommendation was then classified as either a ‘strong’
Recommendation or a ‘conditional’ Recommendation, as per the GRADE process and
reflecting the confidence in the clarity of the balance between desirable and undesirable
consequences. In the case of this Guideline, ‘conditional’ Recommendations indicated:
uncertainty around alignment with values and preferences of autistic people and their
family; a possible reduction in health equity across populations; uncertainty around the
acceptability of the Recommendation for practitioners; and/or a possible lack of feasibility in
implementation. The classifications reflect the judgements of the GDG, based on the
available evidence and other relevant considerations such as alignment with international
conventions. The complete set of judgements is provided in the Supporting Evidence
document accompanying this Guideline.
The grade of Recommendations does not reflect whether a Recommendation should be
implemented or prioritised. All Recommendations within the Guideline represent good
practice and should be implemented. Rather, the grade of Recommendations (strong,
conditional) is intended to support users in considering a range of factors when
implementing a given Recommendation, such as the benefits and harms, resources
needed, and the acceptability to individuals, families, and practitioners. A grading of a
Recommendation as ‘conditional’ reflects a judgment that there are key factors to consider
during implementation. Further information on the grading of each Recommendation is
provided in the Supporting Evidence document.

30
The DRWG prepared the Draft updated Guideline and shared it with the GDG. The
document was reviewed and then discussed by members at a meeting of the GDG. The
GDG endorsed the documents, subject to further minor edits and formatting.

Step 6: Public consultation on Draft updated Guideline

The GDG prepared the Draft updated Guideline and supporting documents (Summary of
Evidence, Administration and Technical Report, and Easy Read summary) for public
consultation.

Ahead of public consultation

The public consultation on the draft updated Guideline complied with Section 74A of the
Commonwealth National Health and Medical Research Council Act 1992 and
accompanying regulations. The following activities were undertaken ahead of the public
consultation period:
• Autism CRC updated its webpage devoted to the Guideline update to reflect the
upcoming consultation period and the invitation to participate.
• Autism CRC announced the upcoming public consultation period, via an email
distributed to people who had registered specifically for updates on the Guideline,
as well as people who were on the Autism CRC communications database more
broadly. Key professional and consumer organisations were identified through the
Reference Group and were invited to provide feedback. Further announcements
were made via Autism CRC social media, and then re-posted by GDG members.
• A Co-chair of the GDG emailed the Office of the Director General, Chief Executive or
Secretary of each state, territory, and Commonwealth Health Department to prepare
those offices for the publication of the Draft updated Guideline.

3.5 Recommendations and Good Practice Points

The Evidence to Decision (EtD) process resulted in a set of Recommendations and Good
Practice Points, which were formulated and presented in a way that met the following
requirements:

Consensus-based Recommendations
Using the GRADE methodology, recommendations may be described as evidence-based or
consensus-based. Evidence-based recommendations are typically based on evidence
derived from one or more systematic reviews containing meta-analyses of empirical data,
that are relevant to one or more clinical questions presented using the PICO format.
Consensus-based recommendations are typically based on sources of evidence, other than
those described for evidence-based recommendations, such as through non-systematic
reviews, evidence derived through consensus-based processes (e.g., Delphi studies), and
qualitative data pertaining to relevant stakeholders’ views and experiences.

31
For this Guideline, the GDG was unanimous in endorsing the formulation of consensus-
based recommendations, for the following reasons (also explained in Section 3.4):
• The questions that are most relevant to professional practice rarely align with the
PICO format.
• There is a lack of empirical evidence on which to make judgements, even if the PICO
format was deemed appropriate.
• The GDG determined that it was critical to gather evidence from all relevant
stakeholders across the autistic and autism communities, including autistic children,
their families, and practitioners to ensure the Recommendations are relevant,
acceptable, and feasible.
All Recommendations are clearly labelled as Consensus-Based Recommendations.
Recommendations are defined as “Key elements of practice that must be followed for a
practitioner to deliver evidence-based supports.”
Good Practice Points were linked to specific Recommendations and defined as “Elements
of practice that provide critical context to that Recommendation, such as how a
Recommendation should be operationalised in clinical practice, or how it is applied to a
specific population or under specific circumstances.”

3.6 Language used in formulating Recommendations and

Good Practice Points
In drafting the Recommendations and Good Practice Points, the GDG adhered to the
following three requirements:
• The wording must be in plain English, specific, unambiguous, employ consistent
terminology, and accessible to autistic people, family members, and practitioners.
• The wording must convey one or more specific actions that practitioners should take.
• The wording must reflect the evidence on which the Recommendation or Good
Practice Point is based, in terms of both strength and precision.

32
4. Recent evidence in relation to assessment
and diagnosis for autism: An umbrella review
4.1 Background
A synthesis of existing research evidence is critical to the development and update of any
Guideline. This evidence can be used to inform the recommendations and to identify factors
(e.g., certainty of evidence, feasibility) that should be considered when they are
implemented (NHMRC, 2016).

4.2 Aims
The aims of this umbrella review were to synthesise data from existing systematic reviews
regarding the following aspects of assessment and diagnosis for autism: (a) existing
guidance; (b) clinical tools and processes; (c) considerations regarding personal and
environmental factors; and (d) experiences of the autistic and autism communities.

4.3 Research Questions

The umbrella review aimed to answer the following research questions:
1. What recommendations have been made to guide medical and allied health
practitioners in assessing and diagnosing autism?
2. What clinical tools and processes contribute to timely and accurate assessment and
diagnosis for autism?
3. What were the considerations regarding personal and environmental factors in
assessment and diagnosis for autism?
4. What were the views and experiences of the autistic and autism communities regarding
assessment and diagnosis for autism?

4.4 Design
This project was an umbrella review, which involved systematically searching for and
selecting relevant systematic reviews, then synthesising and presenting data from the
selected reviews. This umbrella review was conducted in accordance with the procedures
outlined in the Joanna Briggs Institute manual for evidence synthesis (Aromataris et al.,
2020) and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses
(PRISMA) statement (Page et al., 2021).

33
4.5 Method
Eligibility
Systematic reviews (SRs) were included in the umbrella review if they met all the following
criteria:
1. The SR was a meta-analysis or a narrative synthesis (i.e., a SR without a meta-analysis). A
review was considered “systematic” if it: (1) included a clear statement of the purpose of
the review; (2) described the search strategy (e.g., key search terms, multiple relevant
databases, specification of search limits); (3) indicated the criteria used to select studies
for inclusion; (4) presented all findings relevant to the main purpose of the SR; and (5)
used a method of quality appraisal for each included study.
2. The SR reported on assessment and diagnosis for autism. SRs including diagnosis for
other conditions in addition to autism could be included if results were reported
separately for autistic individuals.
3. The SR focused, at least in part, on one of the following four areas:
a. Recommendations to guide medical and allied health practitioners in assessing
and diagnosing autism.
b. Clinical tools and processes that contribute to timely and accurate assessment
and diagnosis for autism (e.g., consideration of diagnostic accuracy, location of
assessment, single vs. multidisciplinary team, professional knowledge and
experience etc.).
c. Considerations regarding personal (e.g., gender, age) and environmental (e.g.,
residential location, financial resourcing) factors in assessment and diagnosis for
autism.
d. The views and experiences of the autistic and autism communities regarding
assessment and diagnosis for autism.
4. The results of the SR were relevant to one or more of the following questions related to
guiding clinicians' practice in assessment and diagnosis:
a. What guiding principles should be followed in the assessment and
diagnosis of autism?
b. In making a referral, conducting a functional, medical, and/or diagnostic
assessment:
i. When should this be considered?
ii. Who should be involved?
iii. In what settings should it occur?
iv. What knowledge, skills, training, and support were required?
v. What information should be collected?
vi. How should information be collected

34
 vii. How should decisions be made?
viii. What should be the outcomes?
ix. How should information be shared?
c. How should the quality and safety of assessment and diagnostic services
be ensured?
5. The SR was published as a thesis, conference paper, scientific report, or peer-reviewed
journal article.
6. The SR had a full-text copy available in English.
7. The final literature search was conducted in the last 6 years (2017-2022). If the search
end date was not stated, then the SR was published in the last 6 years.
There were no restrictions placed on the design of the studies included within each SR. SRs
were excluded if they met any of the following criteria:
1. The SR failed to meet one or more of the above inclusion criteria.
2. The article was an umbrella review or “review of reviews”.
3. The SR incorporated theoretical studies, text, and opinion as their primary source of
evidence.
4. The article was a protocol for a SR only.
5. The SR focused exclusively on research related to understanding aspects of autism
outside of the assessment and diagnostic process (e.g., aetiology, neuroimaging
techniques, prevalence, developmental trajectories, factors impacting likelihood of
autism including biomarkers, accuracy of screening tools and universal screening
programs).
6. The SR had been superseded by an updated version of the same review (completed
after full-text review of all SRs for all other eligibility criteria)
7. The SR was presented in a report, that has since been superseded by a scholarly
publication (completed after full-text review of all SRs for all other eligibility criteria).

Search Strategy
A literature search was conducted in October 2022 using the following databases:
PsycINFO, Education Resources Information Centre (ERIC), Medline, PubMed, EMBASE,
CINAHL, Cochrane Database of Systematic Reviews, Scopus, EBSCO Education Source,
Web of Science, and Epistemonikos.
The search terms were: (Autis* OR ASD* OR Asperger* OR pervasive developmental
disorder* OR PDD* OR pervasive child development disorder* OR pervasive childhood
developmental disorder* OR PCDD* OR disintegrative disorder*) AND (diagnos*) AND
(systematic review* OR systematic literature review* OR evidence synthes* OR meta-analy*
OR meta-regress*). The full search strategy for each database is provided in Appendix 4.1.
Ancestral searches were also completed for the reference lists of included SRs.

35
Study Selection
All studies retrieved from the database searches were imported into the Covidence
software platform. Duplicates identified by the software were automatically removed prior to
screening. Two reviewers (Rahcelle Wicks and either Hannah Waddington or Nicole
Dargue) independently screened the titles and abstracts of the studies against the
inclusion/exclusion criteria and excluded articles if they met one or more exclusion criteria.
Any disagreements were discussed and resolved via consensus. If an agreement could not
be reached, another member of the research team was consulted (David Trembath). The
percentage of agreement [agreements/(disagreements + agreements) × 100] for the title
and abstract screening was 87.6%.
Next, two reviewers (Rachelle Wicks and either Hannah Waddington or Nicole Dargue)
independently screened the full-text reports of all potentially relevant articles according to
the eligibility criteria. Once the authors finished individually screening all full-text reports
they also reviewed all SRs to determine whether they (a) had been superseded by an
updated version of the same review or (b) were reports which have been superseded by a
scholarly publication and should thus be excluded. No reviews were excluded for this
reason. Again, any disagreements were discussed and resolved via consensus with another
member of the research team if needed. The percentage of agreement for the full-text
87.2%.

Data Extraction
Characteristics of the Included Systematic Reviews
Two reviewers (Libby Groves, Rachelle Wicks) read the SR in full, including supplementary
material relevant to answering one or more of the Guideline questions. These reviewers
extracted the following information about the SR characteristics: (a) title, (b) authors, (c) year
of publication, (d) aim(s)/objective(s) of the SR, (e) the type of SR (i.e., meta-analysis with
narrative synthesis), (f) search details, (g) number of studies included, (h) population/s
included, (i) concept/context, (j) design/s of included SRs, (k) quality of included studies
including the assessment tool used, (l) sources of funding and conflicts of interest, (m)
location(s) in which data for included studies was collected. The full list of extraction
questions is included in Appendix 4.2.
The reviewers then categorised the SR into one or more of the following four categories,
based on the focus of the review: (a) SR focused primarily on recommendations to guide
medical and allied health practitioners in assessing and diagnosing autism
(Recommendation focused), (b) SR focused primarily on clinical tools and processes that
contribute to timely and accurate assessment and diagnosis for autism (Process focused),
(c) SR focused primarily on the considerations regarding personal and environmental factors
in assessment and diagnosis for autism (Factor focused), and (d) SR focused primarily on
the views and experiences of the autistic and autism communities regarding assessment
and diagnosis for autism (Experience focused).

36
Any disagreements were discussed and resolved via consensus between the two
reviewers. The percentage of agreement [agreements/(disagreements + agreements) × 100]
for the title and abstract screening was 78.6%.

Qualitative Evidence from Systematic Reviews related to Guiding Clinicians’

Practice

Coding framework
Following the Framework method of analysis (Gale et al., 2013), a coding framework was
developed to be used across all research activities (umbrella review and community
consultation activities) undertaken as part of the Guideline update. The codes within the
framework reflected the guiding principles that should be followed by practitioners and the
processes engaged in during the assessment and/or diagnosis of autism. A series of codes
were developed for each Guideline question, with more than one code able to be applied
where relevant. For guiding principles, a preliminary set of codes was developed, drawing
on the guiding principles used in the National guideline for supporting the learning,
participation, and wellbeing of autistic children and their families in Australia (Trembath et
al., 2022), and preliminary screening of the first 100 participants who responded to the
community consultation survey (see Chapter 5) by members of the working group (Emma
Hinze and David Trembath). In applying the coding framework, the coding team had the
option of applying an ‘other’ code to any comment that they felt did not fit with an existing
code. This ensured that novel, including contrasting, views could be accounted for in the
coding process.
Adopting a coding framework meant that the GDG could code responses in a consistent
manner across the umbrella review, and community-consultation activities (i.e., online
survey and focus groups), thereby ensuring that views and experiences could be compared
and contrasted during the process of formulating Recommendations and making
judgements within the evidence-to-decision framework. The code book, that contains the
complete framework, along with instructions to coders (addressed below) is provided in
Appendix 4.3.

Coding process (all research activities)

Two members of the Working Group (Emma Hinze, Rachelle Wicks) with three research
assistants (Briohny Dempsey, Veronica Frewer, Libby Groves), completed the coding of
evidence collected as part of the Guideline update. The team comprised people with a
combination of relevant professional experience and, for two members, lived experience of
autism. Most members of the coding team had prior experience coding the National
guideline for supporting the learning, participation, and wellbeing of autistic children and
their families in Australia (Trembath et al., 2022).
The following processes were used to support the coding team to complete the coding:
• David Trembath (Co-chair) and Emma Hinze (GDG) worked together, supported by
the GDG, to establish the processes that would be used to code the data and

37
 support the coding team in their work. The code book was created along with all
administrative processes required to securely and reliably manage the data and
coding processes.
• Research assistants (Briohny Dempsey, Veronica Frewer, Libby Groves) were invited
to participate in the project via email, which briefly outlined the Guideline project and
their proposed contributions. A variation to Griffith University Human Research Ethics
Committee to support each person’s involvement was granted.
• David Trembath and Emma Hinze met with the coding team to:
o Provide an overview of the project.
o Review the processes that would be used in data management and coding.
o Review the codes relevant to each person’s role in the coding.
o Answer any questions arising.
• Each member of the coding team was then given access to the code book and
relevant data. Emma Hinze was responsible for coordinating data management and
fielding queries on a daily basis, with David Trembath available to support Emma
Hinze at all times.
• All members of the coding team had previously received training in NVivo which was
used to support the coding process.
• The instructions that were to be followed are presented in Appendix 4.3, but in brief
included:
o Reviewing the code book
o Within NVivo, reviewing evidence (either from SRs or community consultation)
and coding according to the framework
o Completing memos in which the coding team was asked to reflect on any
patterns they were seeing in the data (e.g., prominent themes); differences,
contrasts, and/or contradictions in the responses; any challenges they were
experiencing in assigning codes; suggestions for possible new or revised
codes; reasons for why they may have coded a specific way or anything else
that they, at that time, felt was important. These memos (reflections) were
used to help create an audit trail, to inform the coding process and
interpretation of the data, and to support the coding team in their work.
• During coding, the coding team met on a weekly basis to discuss the coding
process, as well as to discuss their experience of completing the coding. This
meeting was open to all members of the GDG involved in data gathering and coding.
The rationale for this meeting was two-fold. First, the meetings provided an
additional opportunity to ensure fidelity within the coding process (i.e., in addition to
standardised training, standardised coding, and on-call support at all times). Second,
the meetings provided an opportunity for team members to share and debrief about
their experiences. It became apparent, from the first day of data gathering and
coding, that the personal insights and experiences shared by members of the autistic

38
 and autism communities in the community consultation activities were often very
confronting in terms of the challenging circumstances people had found themselves
in, were experiencing currently, or foresaw themselves and their loved ones
experiencing in the future. The focus of the debrief was to share individual feelings,
support each other, and identify if any further support was required. Doing so
ensured each team member was supported, and in doing so ensured the process
was carried out with fidelity.

Coding process and credibility (umbrella review)

One reviewer (Rachelle Wicks) read the Abstract and Results section of each SR, and coded
evidence relevant to the Guideline questions using the coding framework described above.
All sections of the coding framework could be applied.
A quote matrix was created using a list of quotes exported from NVivo to Microsoft Excel.
To check the reliability and credibility of the data extraction, the second reviewer (Libby
Groves) read the Abstract and Results section of each SR, and identified and coded any
relevant text that was not picked up by the first reviewer (Rachelle Wicks). These quotes
were then exported to Excel and reviewed by the first reviewer. The percentage agreement
(number of quotes with agreement/total number of quotes × 100) for this coding was 100%.
The second reviewer also checked that each quote extracted by the first reviewer in the
quote matrix related to the allocated Guideline question. Again, agreement for this coding
was 100%.

Applying codes in the development of evidence summaries for Recommendations and

Good Practice Points (all activities).
The following process was developed, and implemented by members of the GDG (Emma
Hinze, Rhylee Sulek, David Trembath, Kandice Varcin, Rachelle Wicks) and research
assistants (Veronica Frewer, Libby Groves) to ensure that qualitative data gathered during
the research activities could (a) be considered in a systematic manner when supporting and
formulating Recommendations and Good Practice Points and (b) used to populate the
evidence summaries for each Recommendation in a consistent manner. Implementation of
the process with fidelity was supported by (a) documenting the process, (b) producing a
video to explain the process that was used to support implementation (including worked
examples), and (c) daily interaction with Microsoft Teams to support implementation. Each
person involved in this process was assigned a section of the guideline and provided with
associated evidence drawn from the research activities. Figure 4.1 presents the decisions
each panel member made when reviewing the evidence for their assigned section, in
relation to each code, and determining if/how it would inform revisions to existing
Recommendations, the formulation of new Recommendations, and the development of
Good Practice Points. Those involved in the development of evidence summaries also
reviewed any evidence coded as ‘other’, to ensure that information that did not fit within the
coding framework was considered collectively (when viewed alongside the complete set of
data) to ensure that novel Recommendations and Good Practice Points could emerge.
Following application of the process outlined in Figure 4.1 draft Recommendations and
Good Practice Points were then reviewed by the GDG.

39
Figure 4.1 Applying codes in the development of evidence summaries for Recommendations and Good Practice Points.

40
Study Quality Assessment
Risk of Bias was independently assessed by two reviewers (Libby Groves and Rachelle
Wicks) using an adapted version of the Critical Appraisal Checklist for Systematic Reviews
and Research Syntheses (CACSRRS; Appendix 4.4) created by the Joanna Briggs Institute
(2020). The form comprises 11 items related to the quality of: (a) the review question, (b) the
inclusion criteria, (c) the search strategy, (d) the sources and resources, (e) the criteria for
appraising the studies, (f) agreement between raters on extraction and quality appraisal, (g)
the methods used to combine studies, (h) the likelihood of publication bias, (i)
recommendations for policy and/or practice, and (j) directives for new research. Any
disagreements were discussed and resolved via consensus, without input from a third
reviewer. The percentage of agreement [agreements/(disagreements + agreements) × 100]
for quality assessment was 81.3%.
The original CACSRRS was developed to assess SRs pertaining to supports/interventions.
The review questions for these SRs could, thus, be answered using a Population-
Intervention-Comparison-Outcome (PICO) format. However, the research questions being
addressed in this Umbrella Review, and thus the eligibility criteria adopted, mean that PICO
was not relevant to the majority of the included SRs. Therefore, the reviewers instead
determine if the review presents one or more aims/questions that specify the population,
concept, context (PCC approach; Peters et al., 2020). For example, an SR focussing on
experiences should detail (a) the types of participants sought for inclusion, (b) the specific
experience(s) examined by the SR, and (c) the settings in which they were assessed and/or
diagnosed, if relevant.
Each item was rated dichotomously, with “yes” indicating a low risk of bias for that item, and
“no” indicating a high risk of bias for that item. The item regarding the likelihood of
publication bias was rated for meta-analyses only and was rated ‘not applicable’ for all other
SRs. SRs were not excluded based on methodological quality. A summary rating of ‘high’
was awarded for systematic reviews that meet ≥80% of items using the CACSRRS.
Systematic reviews that meet fewer than 80% of items using the CACSRRS were rated as
low.

41
4.6 Results
Study selection
The PRIMSA flow diagram in Figure 4.2 represents the study selection process (Page et al.,
2021). The database search yielded 2,698 records across databases and 866 records once
duplicates were automatically removed. One-hundred-and-thirty two articles proceeded to
full-text review and 105 articles were excluded at this stage (see Appendix 4.5). The most
common reason for exclusion was the article was not relevant to either the research
question or to guiding clinicians’ practice. During extraction, 6 additional articles were
excluded because they did not contain quality assessments and, therefore, were not
deemed to be systematic. This resulted in the inclusion of 15 SRs from the database
searches. Citation searches identified seven additional potentially relevant records, of which
six were excluded (see Appendix 4.6). This resulted in the inclusion of a total of 16 SRs in
the umbrella review (See Appendix 4.7).

42
Figure 4.2 PRISMA flow diagram

National Guideline for supporting autistic children and their families 43

Administration and Technical Report
Study characteristics
Of the 16 SRs included in the umbrella review, three (19%) were meta-analyses with narrative
synthesis, and 13 (81%) were narrative syntheses. The majority of SRs (n = 13; 73%) were
published in 2021 and 2022, with the remainder (n = 3, 19%) published in 2018 or 2019. The
number of studies included in SRs ranged from 6 (Dorlack et al., 2018; Guan et al., 2022) to
56 (van’t Hof et al., 2020), with a median of 20. Each SR specified the final year of the
search, and 13 (73%) SRs mentioned the presence or absence (i.e., since database
inception) of a starting year limit. Of these, 10 (77%) placed a limit on date, whereas 3 (23%)
included all prior published research. The authors of 12 SRs (75%) provided information
regarding sources of funding to conduct the SR and sources of funding were declared for
seven of these (44%). The authors of 10 SRs reported that they had no conflicts of interest,
while the remaining authors did not report on this. A detailed outline of study characteristics
is provided in Appendix 4.8.

Focus of reviews
Eight SRs (50%) had a sole focus and the remaining eight SRs (50%) focussed on two areas
related to assessment and diagnosis for autism. As such, the sum of the below exceeds 16.
Five SRs (31%) examined recommendations to guide practitioners in assessing and
diagnosing autism (Recommendation-focussed). Nine SRs (56%) focussed on clinical tools
and processes that contribute to timely diagnosis for autism (Process-focussed). Four SRs
(25%) examined considerations regarding personal and environmental factors in
assessment and diagnosis for autism (Factor-focussed). Finally, six SRs (38%) focused on
the views and experiences of the autistic and autism communities (Experience-focussed).

Study designs
Ten SRs (63%) specified the design of at least one of the included studies. There was
considerable variation in the designs of the studies included in the SRs. Four SRs (40%)
included studies that used qualitative approaches only (e.g., thematic analysis, grounded
theory, phenomenological analysis), four SRs (40%) included studies that used quantitative
approaches only (e.g., analyses of longitudinal cohort data, randomised controlled trials,
pre-post study designs), and two SRs (20%) included studies that used either qualitative or
quantitative approaches.

Participants
All SRs provided some detail about the participants in the original studies. Eight SRs (50%)
included studies involving children, adolescents, and/or adults with an autism diagnosis or
at high likelihood of receiving an autism diagnosis. Eight SRs (50%) included studies
involving parents and/or family members of individuals with an autism diagnosis, such as
mothers, fathers, grandparents, and aunts. Seven SRs (44%) included practitioners involved
in assessment, diagnosis, and/or provision of support for autism. There was wide variation
in practitioner roles, which included paediatricians, psychologists, educators, speech
language pathologists, and nurses. One SR (6%) included general ‘community members’.

44
Some SRs are included in the above frequencies multiple times due to including studies
involving individuals from more than one of the above categories. Only six SRs (38%) stated
the total number of included participants which ranged from 342 (Legg & Tickle, 2019) to
120,540 individuals (included in the narrative synthesis; Loubersac et al., 2021).

Study location
Thirteen SRs (81%) provided information about the geographical locations at which the
original studies had been conducted. Twelve SRs (92%) included studies conducted in
North America or Europe. This was followed by six SRs (46%) which included studies
conducted in Australia, and five (38%) which included studies conducted in Asia. Three SRs
(23%) included studies conducted in Africa or the Pacific. Finally, only one SR included
studies conducted in South America/the Caribbean (8%). Note that some SRs are included
numerous times in the above frequencies due to including studies from multiple
geographical locations.

Quality of SRs
The quality of SRs, assessed using a modified version of the CACSRRS (Joanna Briggs
Institute, 2020), yielded scores of 5 to 7 out of 11 for the three included meta-analyses, and
2 to 10 out of 10 (mode = 8) for the 13 narrative syntheses. Seven SRs (44%) were
considered “high quality” because they met ≥ 80% of the items, and the remaining nine SRs
(56%) were considered “low quality”. The only SR to score maximum points was conducted
by Legg et al. (2019). A full summary of item scores and totals for each SR is provided in
Appendix 4.9.
Common areas of strength (criterion met for ≥80% of SRs) were in the inclusion of a clear
statement of the review question (Item 1), appropriate inclusion criteria (Item 2), the use of
independent reviewers to assess critical appraisal (Item 6), appropriate methods for
combining study findings (Item 8), and suggestions for future research (Item 11). Common
areas of weakness (criterion met for < 80% of SRs) related to the absence of a clear search
strategy (Item 3), appropriate sources including grey literature (Item 4), lack of an
appropriate critical appraisal tool (Item 5), adoption of methods to minimise extraction errors
(Item 7), and well-supported recommendations for policy/practice (Item 10). Of the three SRs
(65%) that included a meta-analysis, only one included an assessment of potential
publication bias (Item 9).
The quality of studies included within SRs was assessed by the original review authors
using a variety of tools (see Appendix 4.8). The most common of these were Critical
Appraisal Skills Programme (Critical Appraisal Skills Programme, 2019) tool for qualitative
studies which was used in five studies (31%). The Scientific Merit Rating Scale (National
Autism Center, 2015), and the Quality Assessment of Diagnostic Accuracy Studies (Whiting
et al., 2011) were each used in two SRs (13%), while the remaining tools were only used in
one SR. Eleven SRs (69%) were identified as including at least one study at high risk of bias,
three (19%) as including at least one study with moderate risk of bias, and two (13%) as only
including studies at low risk of bias.

45
Evidence from Systematic Reviews related to Guiding Clinicians’ Practice
The quantitative summary of the quote matrix is included in Appendix 4.10. Thirteen SRs
included at least one quote pertaining to Principles. The number of SRs with quotes related
to each principle ranged from one for ‘evidence-based’ to ten for ‘timely and accessible.’ No
quotes were extracted from any of the SRs for the ‘neurodiversity-affirming’, or ‘respecting
Australia’s First Nations Peoples’ principles. All 16 SRs included at least one quote related to
the process of assessment and/or diagnosis. The number of SRs with quotes related to
each aspect of the process ranged from three for ‘decision making’, ‘outcomes, ‘other’, and
‘when’ to 13 for ‘knowledge and training’. No quotes were extracted from any of the SRs for
the Quality and Safety domain. Full lists of the evidence quotes for the Principles and the
Process of Assessment and/or Diagnosis are included in Appendices 4.11 and 4.12
respectively.

46
5. Community Consultation: Online Survey
5.1 Background
Integral to the update of the Guideline was consultation with the autistic and autism
communities. Consistent with the recommendations in the Guidelines for Guidelines
handbook (NHMRC, 2016), community consultation was conducted to ensure that all
relevant stakeholders within Australia were provided with the opportunity to inform the
update of the Guideline. This was key to enhancing the relevance and acceptability of the
updated Guideline to the autistic and autism communities. The consultation process was
also conducted to (a) complement other research evidence, and (b) gather information and
insight from relevant stakeholders where research evidence is currently lacking.
This consultation activity adopted an online survey methodology. This approach was used
to enable broad participation and input from all relevant stakeholders, including children,
young people and adults, who identified as members of the autistic and/or autism
communities.

5.2 Aim
The aim of the online survey was to understand the experiences, views, and preferences of
the autistic and autism communities regarding assessment and diagnosis of autism in
Australia.

5.3 Research questions

• What are the experiences, views, and preferences of the autistic and autism
communities regarding the assessment and diagnosis of autism in Australia?
• What are the autistic and autism communities’ views on best practice for the
assessment and diagnosis of autism in Australia?
• What are the autistic and autism communities’ views on the current version of the
Guideline? Is there anything that should be changed or addressed in the updated
version?

5.4 Design
An online survey methodology was adopted. This was a one-off survey, accessed via a link
on the Autism CRC website and hosted on Griffith University REDCap. Participants had
flexibility and autonomy in choosing what questions they would like to answer. They were
able to complete the survey independently or with support. The survey included speech-to-
text and text-to-speech functionality as well as the option to submit an artwork instead of
text responses.

47
The survey was open to individuals of any age for 4 weeks, from 7th November to 5th
December 2022.

5.5 Method
Ethical approval for this community consultation activity was provided by Griffith University
Human Research Ethics Committee (2022/780).

Eligibility
All relevant stakeholders across the autistic and autism communities were eligible to
participate in the online survey, including
• Autistic people of any age (with or without a formal diagnosis)
• Parents, caregivers, and family members of individuals on the autism spectrum
• Practitioners involved in assessment and/or diagnosis of autism
• Members of organisations/bodies/groups that have an interest in the assessment
and/or diagnosis of autism
• Any other relevant stakeholders (e.g., informal support people, researchers,
educators)

Recruitment
Participant recruitment for community consultation activities was predominantly facilitated
by Autism CRC. Autism CRC initially advertised the community survey by emailing members
on their mailing list (n=25,432 recipients) and posting information on their social media
channels (Twitter, Facebook). The Guideline Development Group also shared the invitation
to participate in the community consultation activities with (a) organisations who had
provided feedback (during the public consultation period) on the National Practice
Guideline for supporting autistic children and their families (n=39), and (b) organisations that
support or represent Aboriginal and Torres Strait Islander Peoples (n=10).
Over the 4-week community consultation period, Autism CRC sent two reminders of the
community consultation activities via email to people on their mailing list. In addition,
Reference Group members were kindly requested to advertise the community consultation
activities through their organisations/members. Members of the GDG also promoted the
community consultation activities throughout their professional networks and social media
pages.
After accessing the online survey link, prospective participants were presented with a short
video outlining what participation in the survey would entail and highlighting accessibility
features of the survey platform. Following this, participants were presented with a
Participant Information Statement and Consent Form. All participants were required to
provide informed consent before accessing the survey questions. For individuals who were
under the age of 18, or could not provide informed consent independently, a parent or

48
guardian was asked to provide consent on their behalf and assist them (as necessary) to
complete the survey.

Tools
The development of the draft online survey was informed by: (i) the structure and content of
the online community consultation activities used as part of the development of the
National Practice Guideline for supporting autistic children and their families in Australia
(Trembath, 2022), (ii) the content of the Delphi survey used as part of the development of
the ‘National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders’
(Whitehouse et al., 2018a,b), and (iii) the set of questions developed by the Guideline
Development Group guiding the update to the Guideline (see Chapter 2).
An iterative approach was taken to the design of the online survey. Members of the
Working Group (Rhylee Sulek, David Trembath, Kandice Varcin) led the initial drafting of the
survey. All members of the Working Group were invited to provide input on the draft survey.
The draft version was then sent to the broader GDG for review and feedback. The Working
Group members addressed feedback from the GDG and made changes to the survey, as
appropriate. The revised version of the survey was coded in REDCap (a secure web-based
application for survey development and distribution) and piloted by members of the
Working Group for clarity and functionality. Feedback provided through the piloting process
led to further minor modifications before the final survey was finalised ahead of distribution.
The survey was intended to be able to collect the views, preferences and experiences of as
many members as possible of the autistic and autism communities (of all ages) with an
interest in the assessment and/or diagnosis of autism. In addition to demographic
information, the final survey (see Appendix 5.1) included open-ended questions that were
structured to collect information related to: (i) people’s current views and/or experiences of
assessment and/or diagnosis in Australia (which could be submitted as text or as piece of
art), (ii) important considerations for each aspect of the assessment and/or diagnosis
process covered by the Guideline (i.e., guiding principles, referral, assessment of
functioning, medical evaluation, diagnostic assessment, safety and wellbeing), and (iii) the
original Guideline and the update (e.g., anything that should be changed or addressed, and
barriers and enablers to implementation of the Recommendations).
Participants were provided with multiple pathways to navigate through the survey, including
the capacity to skip sections and/or exit the survey at multiple points. In addition to the
option to submit views and perspectives on assessment and/or diagnosis as text or artwork,
there were other accessibility features enabled in the survey. These included speech-to-text
and text-to-speech options throughout the survey, the option to save and return as many
times as someone needed, and the option to complete the survey with support or
independently.
The final survey was estimated to take between 10 to 60 minutes to complete depending
on which questions participants chose to answer.

49
Analysis

Coding process and credibility (community consultation activities)

Qualitative data gathered via the online survey were analysed using the coding framework
outlined in Chapter 4. The coding team (Briohny Dempsey, Veronica Frewer, Libby Groves,
Emma Hinze, Rachelle Wicks) were each assigned a set of survey questions, and coded all
participant responses for their assigned section/s. Members of the coding team applied the
relevant section of the coding framework to participant responses (i.e., coding team
member assigned the Principles questions applied the codes outlined under the
corresponding section of the codebook).
While section three of the online survey (i.e., participant views about the existing guideline)
was originally intended to be coded against ‘Principles’ it became apparent that many
pieces of evidence were being coded as ‘other’. A decision was made to read each
participant response individually to determine whether the evidence supported already
identified Recommendations and Good Practice Points. Where new evidence was
emerging, these quotes were used to either (1) support proposals for new
Recommendations and Good Practice Points, or (2) support introductory or guiding text
featured throughout the Guideline.
As indicated in Chapter 4, multiple approaches were used to help ensure the credibility of
the coding process (i.e., akin to reliability in quantitative research) including employing
people with relevant expertise (i.e., previous coding of the Supporting Children’s
Guidelines), using a standardised code book and training procedures, ensuring on-call
support on a daily basis and weekly team meetings for fidelity and support purposes, and
ultimately presenting evidence using people’s own words in preparing the evidence
summaries. In addition, a credibility check was completed for every quote identified during
the coding process was developed.
The credibility check was intended to (a) ensure that quotes were attributed to codes
accurately and (b) ultimately provide readers of the Guideline with information to inform
their interpretation of the data. The instructions were to:
• Review the contents (quote/s) one cell (participant) at a time.
• Ask yourself “Is this quote relevant to the code that has been applied?”
• If the answer is yes, proceed to next step. In some cases, you may find that the quote
is ambiguous because you are only reviewing part of a participant’s more expansive
response or due to the participant’s expression. It is not intended that each quote
will be a complete and cohesive statement in relation to the code, and so provided
that in your judgement the quote appears to be relevant, it can be marked yes.
• If the answer is no, ask yourself “Is this quote potentially relevant to addressing one
or more other guideline questions?
• If yes, highlight the quote in yellow.

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 • If no, highlight the quote in red, indicating that the quote does not appear to fit the
current code, and does not appear relevant to addressing one or more guideline
questions.
This approach resulted in the classification of each quote in each code as either ‘relevant to
the Guideline and code,’ ‘relevant to the Guideline, but cannot establish relevance to code,’
or ‘does not appear to be relevant to the Guideline.’ The proportion of responses related to
each classification is provided in the Results section for each community consultation study.
It is important to note that the person completing the credibility check was reviewing the
coded data, not the original transcripts. Accordingly, they did not necessarily have
knowledge of the context (e.g., broader statement) from which the quotes had been
extracted, which may account for some of the disagreements.

5.6 Results
Participant characteristics
One thousand people accessed the online survey. Of those, 810 participants provided
informed consent to participate. Amongst those, five people provided informed consent,
however, indicated in response to the final survey question that they would not like their
information to be used. As such, the final number of participants who provided consent for
their information to be used was 805.
Participants brought a range of (and often, multiple) perspectives to the survey including
232 people who identified as autistic/person on the autism spectrum, 325
parents/caregivers/family members of someone on the autism spectrum, 298 practitioners,
115 members of organisations/bodies/groups that have an interest in the assessment and/or
diagnosis of autism, and 72 people that identified as bringing ‘other’ perspectives.
Demographic information for each group (as self-identified by the person completing the
survey) is presented in Tables 5.1 – 5.5.

Autistic people/people on the autism spectrum

Table 5.1 Demographic information for people who identified as autistic/on the
autism spectrum in the online survey (n=232).

Demographic group Participation information

Other perspectives Autistic people/people on the autism spectrum brought the following additional
perspectives:
• Parent/caregiver/family member of someone on the autism spectrum:
n=93
• Practitioner: n=47

51
 • Member of an organisation/body/group that has an interest in the
assessment and/or diagnosis of autism: n=22
• Other: n=27

Age Autistic people/people on the autism spectrum were in the following age
brackets:
• 0-12 years (child): n=4 (2%)
• 13-17 years (adolescent): n=1 (0.4%)
• 18-25 years: n=27 (11.6%)
• 26 years or older: n=198 (85%)
2 (1%) participants did not provide a response.

Aboriginal and/or 6 (2.6%) autistic people identified as Aboriginal. 222 (95.7%) autistic people did
Torres Strait Islander not identify as Aboriginal and/or Torres Strait Islander. 4 (1.7%) participants did
Peoples not provide a response.

State/Territory Autistic people resided in the following States/Territories within Australia:

• Australian Capital Territory: n=13 (6%)
• New South Wales: n=54 (23%)
• Northern Territory: n=0 (0%)

• Queensland: n=54 (23%)

• South Australia: n=18 (8%)

• Tasmania: n=8 (3%)

• Victoria: n=61 (26%)
• Western Australia: n=19 (8%)
3 (1%) participants were not currently residing in Australia (and as such, were
unable to progress any further through the survey).
2 (0.9%) participants did not provide a response.

Autism diagnosis 172 (74%) people had received a formal diagnosis of autism. 10 (4%) people were
currently being assessed for a possible diagnosis of autism. 36 (16%) people self-
identified as autistic but had not received a formal diagnosis of autism. 7 (3%)
people chose not to share additional information about their diagnosis. 7 (3%)
people did not provide a response.

Age at autism Of those who had received a formal diagnosis, 169 (98%) people reported their
diagnosis age at diagnosis, with the average age 35.98 years (SD = 14.8), and ages ranging
from 2 years to 78 years. 3 (2%) participants who had received a formal diagnosis
did not provide a response.

Level of support - Of people with a formal diagnosis, the following levels of support were reported
diagnosis by participants to participate in everyday activities at the time of their diagnosis:

52
 • 66 (38%) people reported Level 1 (required some support).
• 66 (38%) people reported Level 2 (required substantial support).
• 3 (2%) people reported Level 3 (required very substantial support).
• 23 (13%) were unsure.
• 10 (6%) preferred not to say.
3 (2%) participants did not provide a response.

For people that specified a level of support (as Level 1, 2 or 3):

• 28 (21%) selected that level as they felt it was most appropriate at the
time they were diagnosed
• 105 (78%) selected that level as it was the level assigned by the
practitioner at the time of diagnosis
2 (1%) participants did not provide a response.

Level of support - The following levels of support were reported by participants to participate in
current everyday activities at the current time:

• 74 (32%) selected Level 1 as most representative.

• 69 (30%) selected Level 2 as most representative.
• 9 (4%) selected Level 3 as most representative.
• 44 (19%) were unsure.
• 19 (8%) preferred not to say.
17 (7%) participants did not provide a response.

Familiarity with the Of autistic people/people on the autism spectrum completing the online survey:
National Guideline for
• 106 (46%) had read or used the previously published ‘National Guideline
the Assessment and
for the Assessment and Diagnosis of Autism Spectrum Disorders in
Diagnosis of Autism in
Australia’ (2018)
Australia
• 122 (53%) had not read or used the previously published ‘National
Guideline for the Assessment and Diagnosis of Autism Spectrum
Disorders in Australia’ (2018)
4 (0.4%) participants did not provide a response.

53
Parents, caregivers or family members of people on the autism spectrum
Table 5.2. Demographic information of parents, caregivers or family members of
people on the autism spectrum (n=325).

Parents, caregivers or family members of people on the autism spectrum

Other perspectives Parents, caregivers or family members of people on the autism spectrum brought
the following additional perspectives:
• Autistic person/person on the autism spectrum: n=93
• Practitioner: n=61
• Member of an organisation/body/group that has an interest in the
assessment and/or diagnosis of autism: n=31
• Other: n=27

Relationship Family members of people on the autism spectrum self-identified as:

• Parents/caregivers: n=277
• Kinship carers/foster carers: n=2
• Children of autistic parents: n=8
• Spouses: n=12

• Grandparents: n=8
• Aunts/uncles: n=7

• Siblings: n=15
• Other/non-specific relation (e.g., support person, family member): n=3
19 (6%) participants did not provide a response.

Age of people Parents, caregivers or family members of people on the autism spectrum,
completing the completing the survey, were in the following age brackets:
survey
• 18-25 years (young adult): n=12 (4%)
• 26 years or older (adult): n=256 (79%)
4 participants (1%) did not provide a response.
*It appeared that there was an error in reporting on this question in some age
brackets. 36 (11%) people indicated that they were 0-12 years of age and 17 (5%)
indicated that they were 13-17 years of age. However, upon closer inspection of the
data, it appeared that these respondents had provided the age of their child (rather
than their own age).

Age of family 28 family members indicated that their family member/s on the autism spectrum
members on the contributed to the responses in the survey. The family members on the autism
autism spectrum spectrum contributing responses were the following ages:
contributing to
• 0-12 years (child): n=10 (29%)

54
responses in the • 13-17 years (adolescent): n=12 (34%)
survey
• 18-25 years (young adult): n=7 (20%)
• 26 years or older (adult): n=6 (17%)

Aboriginal and/or 12 parents, caregivers or family members (4%) identified as Aboriginal and/or Torres
Torres Strait Strait Islander. 306 parents, caregivers and family members (94%) did not identify as
Islander Peoples Aboriginal and/or Torres Strait Islander.
7 (2%) participants did not provide a response.

State/Territory Parents, caregivers and family members of autistic children resided in the following
States/Territories within Australia:
• Australian Capital Territory: n=12 (3.5%)
• New South Wales: n=66 (20%)
• Northern Territory: n=5 (1.5%)
• Queensland: n=73 (22%)
• South Australia: n=18 (5.5%)
• Tasmania: n=10 (3%)
• Victoria: n=71 (22%)

• Western Australia: n=59 (18%)

5 (1.5%) participants were not currently residing in Australia (and as such, were
unable to progress any further through the survey).
6 (2%) participants did not provide a response.

Family members on 301 parents, caregivers and family members provided information about 425 family
the autism members on the autism spectrum.
spectrum
5 (1.5%) parents, caregivers or family members chose not to share additional
information about their family member’s diagnosis.
19 (6%) participants did not provide a response to these items.
Of those that did provide information, family members on the autism spectrum were
in the following age brackets:
• 0-12 years (child): n=201 (47%)

• 13-17 years (adolescent): n=96 (23%)

• 18-25 years (young adult): n=55 (13%)
• 26 years or older (adult): n=72 (17%)
1 (0.2%) participant did not provide a response.

Family members Of the 425 family members on the autism spectrum, 358 (84%) had received a
autism diagnosis formal diagnosis of autism. 67 (16%) had not yet received a formal diagnosis.

55
Family members Of the 358 family members on the autism spectrum that had received a formal
age at autism diagnosis, the average of diagnosis was 9.25 years (SD = 9.39), with ages ranging
diagnosis from 1 year to 73 years.
7 participants did not provide their family member’s age at diagnosis.

Family members Of those with a formal diagnosis, the following levels of support were reported by
level of support - their family members to participate in everyday activities at the time of their
diagnosis diagnosis:
• 63 (18%) people reported Level 1 (required some support).

• 199 (56%) people reported Level 2 (required substantial support).

• 66 (18%) people reported Level 3 (required very substantial support).
• 23 (6%) were unsure.
• 5 (1%) preferred not to say.
2 (0.5%) participants did not provide their family member’s level of support.
For family members that specified a level of support (as Level 1, 2 or 3):
• 64 (20%) selected that level as they felt it was most appropriate at the time
their family member was diagnosed
• 260 (79%) selected that level as it was the level assigned by the practitioner
at the time of their family member’s diagnosis
4 (1%) participants did not provide a response.

Familiarity with the Of parents, caregivers and family members of people on the autism spectrum
National Guideline completing the online survey:
for the Assessment
• 170 (52%) had read or used the previously published ‘National Guideline for
and Diagnosis of
the Assessment and Diagnosis of Autism Spectrum Disorders in Australia’
Autism in Australia
(2018)
• 146 (45%) had not read or used the previously published ‘National Guideline
for the Assessment and Diagnosis of Autism Spectrum Disorders in
Australia’ (2018)
9 (3%) participants did not provide a response.

56
Practitioners
Table 5.3. Demographic information of practitioners involved in the assessment
and/or diagnosis of autism (n=298).

Practitioners

Other perspectives Practitioners brought the following additional perspectives:

• Autistic person/person on the autism spectrum: n=47
• Parent/caregiver/family member of someone on the autism spectrum:
n=61
• Member of an organisation/body/group that has an interest in the
assessment and/or diagnosis of autism: n=39
• Other: n=10

Profession Practitioners included:

• Aboriginal and Torres Strait Islander Health Worker or Health
Practitioner: n=2
• Audiologist: n=1
• Board Certified Behaviour Analyst: n=3

• Developmental educator: n=3

• Educator (early childhood): n=3
• Educator (primary school): n=6

• Educator (high school): n=4

• General Practitioner: n=4

• Nurse: n=7
• Nurse practitioner: n=1
• Occupational therapist: n=23

• Paediatrician: n=25
• Physiotherapist: n=1
• Psychiatrist: n=7
• Psychologist: n=164
• Social worker: n=7

• Speech pathologist: n=44

• Support worker: n=1
• Other: n=13
2 (0.7%) participants did not specify their profession.

57
Aboriginal and/or Torres 3 (1%) practitioners identified as Aboriginal. 280 (94%) practitioners did not
Strait Islander Peoples identify as Aboriginal and/or Torres Strait Islander. 15 (5%) participants did not
provide a response.

State/Territory Practitioners resided in the following States/Territories within Australia:

• Australian Capital Territory: n=5 (1.5%)

• New South Wales: n=93 (31%)

• Northern Territory: n=2 (0.5%)
• Queensland: n=46 (15%)
• South Australia: n=18 (6%)

• Tasmania: n=8 (2.5%)

• Victoria: n=74 (25%)
• Western Australia: n=38 (13%)
12 (4%) participants were not currently residing in Australia (and as such, were
unable to progress any further through the survey).
2 (0.5%) participants did not provide a response.

Involvement in 4 (1%) people chose not to share additional information about their role. 23
assessment and/or (8%) participants did not provide a response.
diagnosis process
Of practitioners that chose to provide additional information about their role
(n=271), they were involved in the assessment and/or diagnosis of autism in
the following ways:

• Referral: n=107 (39%)

• Conducting assessments: n=187 (69%)
• Assessments and diagnosis: n=164 (61%)

• Provision of services after a diagnosis: n=177 (65%)

• Other: n=12 (including supervision and training in assessment,
development of organisational guidelines for assessment,
consultation and support for people referring and assessing) (4.4%)

Involvement in specific Of practitioners that chose to provide additional information about their role
aspects of assessment (n=271), they reported being involved in the following specific aspects of
and/or diagnosis assessment and/or diagnosis:

• Medical evaluation: n=43 (16%)

• Assessment of functioning: n=195 (72%)
• Single clinician diagnostic evaluation: n=143 (53%)
• Consensus team diagnostic evaluation: n=182 (67%)
• None of these aspects: n=10 (4%)
3 (1%) participants did not provide a response.

58
Years of experience in Practitioners had on average 10.04 years (SD = 7.52) experience in the
assessment and/or assessment and/or diagnosis of autism. Years of experience ranged from 1
diagnosis year to 43 years.
7 (2.5%) participants did not provide a response.

Years of experience in Practitioners had on average 13.07 years (SD = 8.38) experience working in
clinical practice clinical practice with people on the autism spectrum. Years of experience
ranged from 0 year to 43 years.
11 (4%) participants did not provide a response.

Organisation type 210 practitioners worked in private organisations (including non-government

organisations) and 99 worked in government organisations (including
hospitals and health services).
3 (1%) participants did not provide a response.

Service setting for Practitioners provided assessment and/or diagnostic services across the
assessment and/or following settings:
diagnosis
• Hospital (inpatient/outpatient): n=38 (14%)

• Community clinic (including private practice): n=210 (77%)

• University clinic: n=15 (5.5%)
• Other: n=33 (12%)
4 (1.5%) participants did not provide a response.

Age groups for Across their career, practitioners had provided autism assessment and/or
assessment and/or diagnostic services across the following age brackets:
diagnostic services
• 0-12 years (children): n=242 (89%)

• 13-17 years (adolescents): n=210 (77%)

• 18-25 years (young adults): n=139 (51%)
• 26 years and older (adults): n=117 (43%)
• Does not provide assessment and/or diagnostic services: n=5 (2%)
4 (1.5%) participants did not provide a response.

Familiarity with the Of practitioners completing the online survey:

National Guideline for
• 255 (86%) had read or used the previously published ‘National
the Assessment and
Guideline for the Assessment and Diagnosis of Autism Spectrum
Diagnosis of Autism in
Disorders in Australia’ (2018)
Australia
• 30 (10%) had not read or used the previously published ‘National
Guideline for the Assessment and Diagnosis of Autism Spectrum
Disorders in Australia’ (2018)
13 (4%) participants did not provide a response.

59
Members of organisations/bodies/groups
Table 5.4. Demographic information of members of organisations/bodies/groups
that have an interest in the assessment and/or diagnosis of autism (n=115).

Members of organisations/bodies/groups

Organisational level response Members of organisations/bodies/groups responded to the online

survey as:
• Individual members (i.e., the views were that of the individual):
n=81 (70%)
• The nominated representative of the organisation/body/group
(i.e., submitting on behalf of the organisation as a whole): n=31
(27%)
3 (2%) participants did not provide a response.

Other perspectives For those people providing feedback as individual members of

organisations/bodies/groups (n=81) with an interest in the assessment
and/or diagnosis of autism, they brought the following additional
perspectives:
• Autistic person/person on the autism spectrum: n=19
• Parent/caregiver/family member of someone on the autism
spectrum: n=28
• Practitioner: n=34
• Other: n=17

State/Territory Organisations/bodies/groups provided services in/across the following

States/Territories within Australia:
• Australian Capital Territory: n=22
• New South Wales: n=43
• Northern Territory: n=19
• Queensland: n=33
• South Australia: n=32
• Tasmania: n=23
• Victoria: n=43
• Western Australia: n=32
6 (5%) participants did not provide a response.

Familiarity with the National Of members of organisation completing the online survey:
Guideline for the Assessment
and Diagnosis of Autism in • 93 (81%) had read or used the previously published ‘National
Australia Guideline for the Assessment and Diagnosis of Autism
Spectrum Disorders in Australia’ (2018)
• 14 (12%) had not read or used the previously published
‘National Guideline for the Assessment and Diagnosis of
Autism Spectrum Disorders in Australia’ (2018)
8 (7%) participants did not provide a response.

60
‘Other’ Participants
Table 5.5. Demographic information of participants who indicated that they brought
‘Other’ perspectives (n=72).

Other

‘Other’ description Individuals who indicated that they brought ‘Other’ perspectives described
themselves/their interest in the assessment and/or diagnosis of autism as:
• Advisory group member: n=1
• Advocate: n=1
• Autistic person: n=1
• Behaviour support: n=2
• Consultant: n=1
• Coordinator: n=1
• Educator: n=1
• Facilitator/moderator of online group: n=1
• Friend: n=1
• Health professional: n=1
• Manager at a service: n=2
• Member of an organisation: n=1
• Mental health clinician: n=1
• Music therapist: n=1
• Neurpsychologist: n=1
• Occupational therapist: n=3
• Parent: n=3
• Psychologist: n=5
• Researcher: n=12
• Social worker: n=1
• Speech pathologist: n=1
• Spouse: n=2
• Student (at university): n=3
• Student teacher: n=1
• Support person: n=1
• Support worker: n=6
• Teacher: n=6
• Therapy assistant: n=1
• Work with autistic young people: n=1
12 (17%) participants did not provide a response.

61
Other People who selected ‘other’ brought the following additional perspectives:
perspectives
• Autistic person/person on the autism spectrum: n=27
• Parent/caregiver/family member of someone on the autism spectrum: n=27
• Practitioner: n=10
• Member of an organisation/body/group that has an interest in the
assessment and/or diagnosis of autism: n=17

Age People who selected ‘Other’ were in the following age brackets:
• 13-17 years (adolescent): n=1 (1%)
• 18-25 years: n=7 (10%)
• 26 years or older: n=63 (88%)
1 (1%) participant did not provide a response.

Aboriginal and/or 0 (0%) of people who selected ‘Other’ identified as Aboriginal and/or Torres Strait
Torres Strait Islander. 68 (94%) people did not identify as Aboriginal and/or Torres Strait Islander. 4
Islander peoples (6%) participants did not provide a response.

State/Territory People who selected ‘Other’ resided in the following States/Territories within
Australia:

• Australian Capital Territory: n=1 (1%)

• New South Wales: n=16 (22%)
• Northern Territory: n=0 (0%)
• Queensland: n=19 (26%)
• South Australia: n=3 (4%)
• Tasmania: n=0 (0%)
• Victoria: n=19 (26%)
• Western Australia: n=11 (15%)
3 (4%) participants were not currently residing in Australia (and as such, were unable
to progress any further through the survey).

Familiarity with Of people who selected ‘Other’ completing the online survey:
the National
• 47 (65%) had read or used the previously published ‘National Guideline for
Guideline for the
the Assessment and Diagnosis of Autism Spectrum Disorders in Australia’
Assessment and
(2018)
Diagnosis of
Autism in • 22 (31%) had not read or used the previously published ‘National Guideline
Australia for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia’
(2018)
3 (4%) participants did not provide a response.

62
Qualitative data

Survey text responses

A total of 5,229 references (i.e., participant quotes) were coded using the framework, with
the distribution of references (i.e., quotes) for each participant group presented in Table 5.6.
These quotes, where relevant to updating the Recommendations and Good Practice Points,
feature in the corresponding Evidence Summaries.

Table 5.6. Summary of codes and references for each participant group.

Codes Number of Coding References for Each Participant Group

Autistic Person Family Practitioner Organisations Other

Principles

Appropriate 88 86 86 32 26

Competent 158 179 158 54 43

Comprehensive 42 86 132 31 21

Coordinated 8 25 54 16 4

Culturally Safe 2 4 3 4 2

Ethical 16 11 27 10 5

Evidence-based practice approach 40 77 113 32 20

Helpful 102 144 86 45 23

Holistic 73 99 91 36 20

Individual and Family Centred 51 79 47 27 26

Neurodiversity-affirming 56 47 72 38 13

Principles – Other 118 153 143 60 34

Respecting Australia’s First Nations 2 2 2 3 2

People

Strengths focused 37 52 68 16 10

Timely and Accessible - Equity 113 144 74 35 19

63
Comprehensive Needs Assessment

Decision Making 0 0 0 0 0

Information Collected – How 41 52 72 28 10

Information Collected – What 35 49 60 28 6

Information Sharing 6 6 7 4 2

Knowledge and Training 83 92 83 29 20

Outcomes 7 7 9 5 2

Setting 4 24 21 8 2

When 0 1 1 0 0

Who 0 6 7 1 1

Other 13 7 6 4 4

Referral

Decision Making 9 8 10 5 2

Information Collected – How 16 18 22 7 6

Information Collected – What 23 40 50 15 9

Information Sharing 11 15 29 5 2

Knowledge and Training 82 97 89 28 24

Outcomes 13 22 25 12 8

Setting 0 0 0 0 0

When 7 10 5 1 0

Who 7 8 5 4 0

Other 3 2 8 0 1

Diagnostic Evaluation

Decision Making 1 2 11 5 2

Information Collected – How 36 49 68 25 15

64
Information Collected – What 17 23 31 11 6

Information Sharing 3 7 13 4 3

Knowledge and Training 54 59 82 30 13

Outcomes 3 8 19 6 4

Setting 1 13 12 5 3

When 0 0 0 0 0

Who 14 27 36 11 6

Other 6 5 3 1 1

Quality and Safeguarding

Decision Making 0 0 0 0 0

Information Collected – How 12 13 21 7 3

Information Collected – What 11 11 33 7 4

Information Sharing 25 30 31 11 6

Knowledge and Training 62 90 102 39 22

Outcomes 18 21 19 11 6

Setting 22 25 31 13 8

When 1 2 1 0 0

Who 4 11 20 4 4

Other 6 6 7 4 0

Medical Evaluations

Decision Making 1 0 0 1 0

Information Collected – How 16 23 23 13 4

Information Collected – What 32 41 51 18 9

Information Sharing 8 11 7 5 3

Knowledge and Training 58 77 84 30 17

65
 Outcomes 7 9 7 5 1

Setting 2 1 3 3 1

When 0 1 0 1 0

Who 8 14 22 10 1

Other 1 1 2 0 0

As indicated above, credibility checks were completed for all quotes that featured in the
analysis of qualitative data from the community survey. 99% were classified as ‘relevant to
the guideline and code,’ <1% were classified as ‘relevant to the guideline, but cannot
establish relevance to code,’ and 0% were classified as ‘does not appear to be relevant to
the Guideline. Readers are reminded that the person completing the credibility check was
reviewing the coded data, not the original transcripts. Accordingly, they did not necessarily
have knowledge of the context (e.g., broader statement) from which the quotes had been
extracted.

Artwork submissions
As part of the community consultation process, participants were invited to submit an
artwork instead of and/or alongside providing written responses to questions presented in
the community survey. A total of eight artwork submissions were received, with two
excluded from analysis (due to containing only text responses). The remaining six artworks
were analysed according to the coding scheme presented in Appendix 4.3 (i.e., the coding
scheme applied across all community consultation activities). Two autistic members of the
working group jointly viewed and discussed potential coding for each submission until
consensus was reached. The results from the artwork submissions analysis are included in
Table 5.6.

66
6. Community Consultation: Focus Groups
6.1 Background
Integral to the update of the Guideline was consultation with the autistic and autism
communities. Consistent with the recommendations in the Guidelines for Guidelines
handbook (NHMRC, 2016) community consultation was conducted to ensure that all
relevant stakeholders within Australia were provided with the opportunity to inform the
update of the Guideline. This was key to enhancing the relevance and acceptability of the
Guideline to the autistic and autism communities. The consultation process was also
conducted to (a) complement the current research evidence, and/or (b) gather information
and insight from relevant stakeholders where research evidence is currently lacking.
This consultation activity was conducted to ensure that the experiences, views, and
preferences of autistic individuals, their family members, and practitioners involved in the
assessment and/or diagnosis of autism were captured in the update of the Guideline.

6.2 Aim
The aim of the focus groups were to understand the experiences, views, and preferences of
(a) autistic people, (b) family members of autistic people, and (c) practitioners regarding
assessment and/or diagnosis of autism.

6.3 Research question

What are the experiences, views, and preferences of autistic people, family members, and
practitioners regarding assessment and/or diagnosis of autism in Australia?

6.4 Design
A qualitative methodology approach was adopted, with a series of nine online focus groups
run between November 15th to December 2nd, 2022. Three of the focus groups were open
to autistic adults, three were open to family members of autistic individuals and three were
open to practitioners.

6.5 Method
Ethical approval for this community consultation activity was provided by Griffith University
Human Research Ethics Committee (2022/780).

Eligibility
Autistic adults, family members, and practitioners were eligible to participate in the focus
groups. To participate, all individuals had to be aged 18 years or over and reside in
Australia.

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Recruitment
Participant recruitment for the focus groups was predominantly facilitated by Autism CRC.
An invitation to register interest in attending a focus group was distributed to members of
Autism CRC mailing lists. In addition, links to access the focus group registration survey
were made available via the social media (Facebook and Twitter) accounts of Autism CRC.
Members of the GDG also promoted the focus groups throughout their professional
networks and social media pages. After following the registration link, prospective
participants were presented with a Participant Information Statement and Consent Form
and required to indicate consent before providing their details and preferences to attend an
online focus group.
The registration survey for the first round of focus groups was closed following a two-day
recruitment period, due to total registrations exceeding available places (n=142 registrations
for 72 positions). Registered individuals were allocated to a focus group based on their
preferences and in consecutive order of receiving their registration, with 12 individuals
allocated to each of the six groups and five waitlist positions available. A further three focus
groups were advertised due to overwhelming demand, with recruitment occurring over a
five-day period. Individuals who were not allocated to a group in the first round were
contacted and provided an opportunity to indicate their preferences to attend one of the
additional groups. A random number generator was then used to assign the remaining
registered individuals (n=104 new registrations, n=5 individuals from round one) to one of
the three additional groups, with 12 individuals allocated to each of the six groups and five
waitlist positions available.
All registered participants were emailed to indicate their assignment to a focus group,
waitlist, or to direct them to the online survey if they were not allocated. A total of nine focus
groups were conducted, three for each participant group.

Tools
Participants completed a demographic survey (see Appendix 6.1) upon registering (round
one) or were sent a link to the demographic survey following assignment to a group (round
two). The demographic surveys were coded in REDCap (a secure web-based application for
survey development and distribution).

Focus Group Question Guide

A semi-structured question guide was developed and used across all nine focus groups.
The questions developed for the focus groups covered the same three overarching
questions posed to participants who completed the online survey:
1. What is, or was, good about the way assessment and/or diagnosis happens in
Australia?
2. What is, or was, bad about the way assessment and/or diagnosis happens in
Australia?
3. What would like to see change in the way assessment and/or diagnosis happens in
Australia?

68
 Thinking to the future
• What principles are important for the assessment and diagnosis process?
• What can practitioners do to help ensure the safety and wellbeing of individuals
and their families?

Focus group facilitation

Each focus group was facilitated, via Microsoft Teams, by two members of the GDG across
a three-week period (15th November – 2nd December 2022). Each group was facilitated by
a co-chair (either David Trembath or Emma Goodall), while the second facilitator alternated
between different GDG members (Nicole Dargue, Rhylee Sulek, Kandice Varcin, Hannah
Waddington, Andrew Whitehouse). The first facilitator was responsible for (a) coordinating
the meeting, (b) introducing the Guideline development process and providing an
orientation to the Focus Group, (c) facilitating the discussion, and (d) summarising and
concluding the meeting. The second facilitator was responsible for facilitating the
discussion via the ‘chat’ comments (an option available to all participants throughout the
entirety of the focus group, as an additional or alternate method of contributing).
Participants were invited to have their video function turned on for the focus group, but this
was not a requirement. Participants were also invited to share information in the way they
preferred (i.e., through verbal discussion or writing responses using the ‘Chat’ function).
Each focus group followed the same schedule:
• Fifteen minutes prior to the meeting, the two facilitators joined Microsoft Teams to
review planning for the focus group.
• At the scheduled start time, participants were admitted to the meeting.
• Facilitator 1 presented the introduction to the Guideline development process and
focus group orientation (15 minutes).
• Facilitator 1 presented the three focus group questions, one at a time (allowing
approximately 30 minutes per question).
• Facilitator 1 invited the participants to briefly introduce themselves the first time they
shared responses to posed questions.
• Facilitator 1 presented a summary of the focus group outcomes, an overview of the
next steps, and thanked the participants for their contribution (10 minutes).
A copy of the PowerPoint presentation that was used for all eight focus groups is provided
in Appendix 6.2.

Analysis

Coding process and credibility

Focus group transcriptions were auto generated by the Microsoft Teams platform.
Transcriptions were deidentified by a research assistant prior to analysis. De-identified
transcriptions files were uploaded to NVivo software for analysis. ‘Chat’ comments and any

69
further information provided to the facilitators following focus groups were copied from
Microsoft Teams into a Word document and deidentified for analysis.
Information collected during the focus groups were coded according to the ‘Principles’
section of the coding framework outlined in detail in Chapter 4. This approach – rather than
coding according to each section of the code book (e.g., making a referral, conducting an
assessment) was adopted a priori in the first instance, given that focus groups – by their
nature of encouraging discussion – may see participants talk in relation to more than one
aspect of the Guideline at once (e.g., a person simultaneously talking about the referral
process and their experience of diagnosis at the same). However, to ensure that no specific
insights, experiences, or suggestions that may be relevant to formulating Recommendations
and Good Practice Points were missed, the GDG also reviewed every transcript (discussion
and chat) generated from the groups in full to ensure that all information was considered in
relation to all Guideline questions, Recommendations and Good Practice Points.
The processes to ensure credibility of the coding undertaken were identical to those
outlined in Chapter 5.

6.6 Results
Participant characteristics
A total of 246 registrations for 96 focus group positions (i.e., 12 slots across 8 focus groups)
were received. Of these, 68 participants attended their allocated focus group. One
participant was excluded from all analysis following their participation in a focus group as
they did not meet criteria for inclusion (i.e., were not an Australian resident). While many
participants held multiple perspectives (e.g., an autistic individual who was also a
practitioner, see Figure 6.1), 21 (31.3%) participants attended focus groups where the
common shared experience was being an autistic adult, 19 (28.4%) participants attended
focus groups where the common shared experience was being a parent or caregiver of a
child on the autism spectrum, and 27 (40.3%) participants attended focus groups where the
shared experience was being a practitioner who provides assessment and/or diagnostic
services to individuals on the autism spectrum.
Of the 67 participants who were included in analysis, 66 provided some details about
themselves, and their child(ren) where relevant, through the online demographic survey
(see Table 6.1).

70
Figure 6.1 Unique and shared perspectives of focus group participants.

Autistic Adult
n=9

n = 12 n=4
n =10

Parent/Caregiver n=3 Practitioner

n=8 n = 17

Table 6.1. Demographic information for people who attended the focus groups and
provided some demographic information (n=66).

Demographic group Participation information

Perspectives Participants attending the focus groups brought the following perspectives:

• Autistic person/person on the autism spectrum: n=35

• Parent/primary caregiver/family member of someone on the autism
spectrum: n=34
• Practitioner: n=34
Other: n=10

Age Participants were in the following age brackets:

• 18-21 years: n=1 (1.5%)
• 26 years and over: n=63 (95.5%)
2 (3%) participants did not provide a response.

Gender identity 55 (83%) participants identified as female, 4 (6%) identified as male, 4 (6%)
as non-binary, and 2 (3%) preferred not to say.
1 (1%) participant did not provide a response.

71
 Aboriginal and/or Torres 2 (3%) participants identified as Aboriginal and/or Torres Strait Islander.
Strait Islander Peoples
3 (5%) participants did not provide a response.

State/Territory Participants resided in the following States/Territories within Australia:

• Australian Capital Territory: n=2 (3%)
• New South Wales: n=20 (30%)
• Northern Territory: n=2 (3%)
• Queensland: n=13 (20%)
• South Australia: n=3 (5%)
• Tasmania: n=1 (1%)
• Victoria: n=19 (29%)
• Western Australia: n=5 (8%)
1 (1%) participant did not provide a response.

Table 6.2. Participants who identified as autistic.

Autism diagnosis 29 (44%) people had received a formal diagnosis of autism, and 4 (6%)
people self-identified as autistic but had not received a formal diagnosis of
autism.
2 (3%) participants did not provide a response.

Age at autism diagnosis Of those who had received a formal diagnosis, the average age of
diagnosis was 40.8 years (SD = 9.31), with ages ranging from 24 years to 55
years.

Level of support - diagnosis Of people with a formal diagnosis, the following levels of support were
reported by participants to participate in everyday activities at the time of
their diagnosis:
• 12 (41%) people reported Level 1 (required some support).
• 12 (41%) people reported Level 2 (required substantial support).
• 0 (0%) people reported Level 3 (required very substantial support).
• 3 (10%) were unsure.
• 2 (7%) preferred not to say.

Level of support – current The following levels of support were reported by participants to participate
in everyday activities at the current time:
• 14 (40%) selected Level 1 as most representative.
• 14 (40%) selected Level 2 as most representative.
• 1 (3%) selected Level 3 as most representative.

72
 • 2 (6%) were unsure.
• 3 (8%) preferred not to say.
• 1 (3%) participant did not provide a response.

Table 6.3. Participants who identified as parents/caregivers/family members.

Family members on the 33 family members provided information about 56 family members on the
autism spectrum autism spectrum.
1 family member chose not to share additional information about their
family member’s diagnosis.
Of those that did provide information, family members on the autism
spectrum were in the following age brackets:
• 0-12 years (child) = 20 (36%)
• 13-17 years (adolescent) = 18 (32%)
• 18-25 years (young adult) =13 (23%)
• 26 years or older (adult) = 5 (9%)

Family member autism Of the 56 family members on the autism spectrum, 47 (84%) had received a
diagnosis formal diagnosis of autism. 9 (16%) had not yet received a formal diagnosis.

Family members age at Of the 47 family members on the autism spectrum that had received a
autism diagnosis formal diagnosis, the average age of diagnosis was 9.05 years (SD = 9.39),
with ages ranging from 2 years to 39 years.

Family members level of Of those family members with a formal diagnosis, the following levels of
support – diagnosis support were reported by their family members to participate in everyday
activities at the time of their diagnosis:
• 11 (23%) people reported Level 1 (required some support).
• 27 (57%) people reported Level 2 (required substantial support).
• 7 (15%) people reported Level 3 (required very substantial support).

• 1 (2%) person was unsure.

• 1 (2%) person preferred not to say.

73
Table 6.4. Participants who identified as practitioners.

Profession Practitioners included:

• Nurse practitioner: n=2
• Occupational therapist: n=1
• Paediatrician: n=1
• Psychologist: n=24
• Speech pathologist: n=4
• Other: n=2

Involvement in assessment Of practitioners that chose to provide additional information about their
and/or diagnosis role (n=34), they were involved in the assessment and/or diagnosis of
autism in the following ways:
• Referral: n= 15 (44%)
• Conducting assessment: n = 24 (71%)
• Assessment and/or diagnosis: n = 24 (71%)
• Provision of services after a diagnosis: n= 25 (74%)
• Other: n= 4 (12%, including the training and supervision of other
practitioners).

Involvement in specific Of practitioners that chose to provide additional information about their
aspects of assessment and/or role (n=34), they reported being involved in the following specific aspects
diagnosis of assessment and/or diagnosis:
• Medical evaluation: n=2 (6%)
• Assessment of functioning: n=25 (74%)
• Single clinician diagnostic evaluation: n= 22 (65%)
• Consensus team diagnostic evaluation: n= 26 (76%)
2 practitioners indicated they were not involved in the processes outlined
above.

Years of experience in Practitioners had on average 12.76 years (SD = 10.00 years), experience in
assessment and/or diagnosis the assessment and/or diagnosis of autism. Years of experience ranged
from 1.5 years to 29 years.

Years of experience in clinical Practitioners had on average 12.76 years (SD = 8.18) experience working in
practice clinical practice with people on the autism spectrum. Years of experience
ranged from 2 years to 30 years.

Organisation type 28 practitioners worked in private organisations (including non-government

organisations) and 10 worked in government organisations (including
hospitals and health services).

74
 Service setting for Practitioners provided assessment and/or diagnostic services across the
assessment and/or diagnosis following settings:

• Hospital (inpatient/outpatient): n=4 (12%)

• Community clinic (including private practice): n=30 (88%)
• University clinic: n=2 (6%)
• Other: n=3 (9%)

Age groups for assessment Across their career, practitioners had provided autism assessment and/or
and/or diagnostic services diagnostic services across the following age brackets:
• 0-12 years (children): n=29 (85%)
• 13-17 years (adolescents): n=24 (71%)
• 18-25 years (young adults): n=20 (59%)
• 26 years and older (adults): n=20 (59%)
• Does not provide assessment and/or diagnostic services: n=2 (6%)

Qualitative data
A total of 1052 references (i.e., quotes) were coded using the framework. The distribution of
references for each code for each group are presented in Table 8.2. These quotes, where
relevant to the formulation of Recommendations and Good Practice Points, feature in the
corresponding Evidence Summaries.
Table 6.5. Summary of codes and references for the three types of focus groups.

Codes Autistic Adults Parents Practitioner Other

Principles

Appropriate 84 84 69 30

Competent 112 89 86 48

Comprehensive 23 27 26 13

Coordinated 23 33 30 8

Culturally Safe 6 5 3 7

Ethical 14 7 11 8

Evidence-based practice approach 8 12 5 5

Helpful 81 73 50 32

Holistic 54 33 27 19

75
 Individual and Family Centred 56 67 32 26

Neurodiversity-affirming 36 30 25 15

Principles – Other 43 23 17 19

Respecting Australia’s First 1 1 1 0

Nations People

Strengths focused 27 29 19 10

Timely and Accessible - Equity 51 72 50 7

Credibility checks were completed for all quotes that featured in the analysis of qualitative
data from the focus groups. 100% were classified as ‘relevant to the guideline and code,’ 0%
were classified as ‘relevant to the guideline, but cannot establish relevance to code,’ and
0% were classified as ‘does not appear to be relevant to the Guideline.’ Readers are
reminded that the person completing the credibility check was reviewing the coded data,
not the original transcripts. Accordingly, they did not necessarily have knowledge of the
context (e.g., broader statement) from which the quotes had been extracted.

76
7. References
Alonso-Coello, P., Oxman, A. D., Moberg, J., Brignardello-Petersen, R., Akl, E. A., Davoli, M.,
... & Schünemann, H. J.. (2016). GRADE Evidence to Decision (EtD) frameworks: a systematic
and transparent approach to making well informed healthcare choices. 2: clinical practice
guidelines. British Medical Journal, 353, i2089.
Alonso-Coello, P., Schünemann, H. J., Moberg, J., Brignardello-Petersen, R., Akl, E. A.,
Davoli, M., ... & GRADE Working Group. (2016). GRADE Evidence to Decision (EtD)
frameworks: a systematic and transparent approach to making well informed healthcare
choices. 1: Introduction. British Medical Journal, 353, i2016.
Aromataris, E., Fernandez, R., Godfrey, C., Holly, C., Khalil, H., & Tungpunkom, P. (2020).
Chapter 10: Umbrella Reviews. In E. Aromataris & Z. Munn (Eds.), JBI Manual for Evidence
Synthesis. Joanna Briggs Institute.
Critical Appraisal Skills Programme. (2019). CASP qualitative checklist. https://casp-
uk.net/casp-tools-checklists/
Gale, N. K., Heath, G., Cameron, E., Rashid, S., & Redwood, S. (2013). Using the framework
method for the analysis of qualitative data in multi-disciplinary health research. BMC
Medical Research Methodology, 13(1), 1-8.
Joanna Briggs Institute. (2020). Checklist for systematic reviews and research
syntheses. https://jbi.global/sites/default/files/2021-
10/Checklist_for_Systematic_Reviews_and_Research_Syntheses.docx
National Autism Center. (2015). Findings and conclusions: National standards project,
phase 2. Randolph.
National Health and Medical Research Council (NHMRC) (2011). Procedures and
requirements for meeting the 2011 NHMRC standard for clinical practice
guidelines. https://www.nhmrc.gov.au/sites/default/files/documents/reports/clinical%20
guidelines/meeting-clinical-practice-guidelines.pdf
National Health and Medical Research Council (NHMRC) (2016). Guidelines for Guidelines
Handbook. www.nhmrc.gov.au/guidelinesforguidelines.
National Health and Medical Research Council (NHMRC) (2018). Australian Code for the
Responsible Conduct of Research. https://www.nhmrc.gov.au/about-
us/publications/australian-code-responsible-conduct-research- 2018#block-views-block-
file-attachments-content-block-1
Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D., ... &
Moher, D. (2021). The PRISMA 2020 statement: an updated guideline for reporting
systematic reviews. BMJ, 71, 372.
Peters, M., Godfrey, C., McInerney, P., Munn, Z., Tricco, A., & Khalil, H. (2020). Chapter 11:
Scoping Reviews. In: Aromataris E, Munn Z (Editors). JBI Manual for Evidence Synthesis.
Joanna Briggs Institute.

National Guideline for supporting autistic children and their families – Draft Guideline
77
Not for distribution Confidential to the Guideline Development Group
Schünemann, H., Brożek, J., Guyatt, G., & Oxman, A. (2013). GRADE handbook for grading
quality of evidence and strength of recommendations. The GRADE Working Group.
Trembath, D., Varcin, K., Waddington, H., Sulek, R., Pillar, S., Allen, G., Annear, K., Eapen, V.,
Feary, J., Goodall, E., Pilbeam, T., Rose, F., Sadka, N., Silove, N., Whitehouse, A. (2022).
National guideline for supporting the learning, participation, and wellbeing of autistic
children and their families in Australia. Autism CRC. Brisbane.
Whitehouse, A. J. O., Evans, K., Eapen, V., & Wray, J. (2018a). A national guideline for the
assessment and diagnosis of autism spectrum disorders in Australia. Cooperative Research
Centre for Living with Autism.
Whitehouse, A. J. O., Evans, K., Eapen, V., Wray, J. (2018b). A national guideline for the
assessment and diagnosis of autism spectrum disorders in Australia – Administrative and
technical report. Autism CRC.
Whitehouse, A. J. O., Varcin, K., Waddington, H., Sulek, R., Bent, C., Ashburner, J., . . . &
Trembath, D. (2020). Interventions for children on the autism spectrum: A synthesis of
research evidence. Autism CRC.
Whiting, P. F., Rutjes, A. W. S., Westwood, M. E., Mallett, S., Deeks, J. J., Reitsma, J. B., et al.
(2011). QUADAS-2: A revised tool for the quality assessment of diagnostic accuracy studies.
Annals of Internal Medicine, 155(8), 529–536. https://doi.
org/10.7326/0003-4819-155-8-201110180-00009.

78
8. Appendices
The appendices have been prepared for the Draft Administration and Technical Report in
draft form. These documents will be further updated and formatted prior to the release of
the final updated Guideline.

List of appendices

Number Name

Appendix 2.1 Guideline Development Group – Terms of Reference

Appendix 2.2 Guideline Development Group – Declaration of Interests

Appendix 2.3 Reference Group – Terms of Reference

Appendix 4.1 Database search strategy

Appendix 4.2 Extraction items for characteristics of included systematic reviews

Appendix 4.3 Qualitative Codebook

Appendix 4.4 JBI Critical Appraisal Checklist

Appendix 4.5 Articles excluded during full-text screen and extraction with reasons

Appendix 4.6 Articles excluded during extraction with reasons

Appendix 4.7 Included articles

Appendix 4.8 Characteristics of included systematic reviews

Appendix 4.9 Quality appraisal

Appendix 4.10 Quantitative summary of quote matrices

Appendix 4.11 Umbrella Review Evidence Quotes - Founding Principles

Appendix 4.12 Umbrella Review Evidence Quotes – Process of Assessment and/or Diagnosis

Appendix 5.1 Online survey

Appendix 6.1 Demographics survey – focus group

Appendix 6.2 Focus Group PowerPoint Presentation

79
 Update of the National Guideline for the Assessment and Diagnosis of Autism in
Australia

Appendix 2.1 Guideline Development Group – Terms of Reference

1
Update: National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in Australia
Terms of Reference for the Guideline Development Group

Background
In 2018, Autism CRC published the National Guideline for the Assessment and Diagnosis of Autism
Spectrum Disorders in Australia. This was the first national practice guideline in Australia, and has
underpinned fundamental changes in the way autism is understood, assessed, and diagnosed in the
Australian community. The Guideline, herein referred to as the Assessment and Diagnosis Guideline
(ADG) for brevity, was endorsed by the National Health and Medical Research Council and a range of
relevant professional associations. Autism CRC has also supported the implementation of the ADG
through a range of implementation activities, along with the efforts of an Expert Reference Group
commissioned by the Australian Government Department of Social Services to inform its
implementation and evaluation. Given that nearly 5 years has passed since publication, as per
NHMRC requirements, it is important that the ADG be updated. This process will occur in a manner
consistent with the NHMRC Standards for Guideline Development.

In June 2022, Autism CRC made a call for applications for investment to support the update of the
ADG. A group of five organisations – Griffith University, Telethon Kids Institute, Autism New Zealand,
Victoria University of Wellington, and University of Queensland – were successful in an application
to undertake this work, which will occur between 01/09/22 and 30/06/23. The process for updating
the ADG will be led by a Guideline Development Group (GDG). The GDG will bring together members
with diverse lived and professional expertise relevant to the Guideline, in keeping with NHMRC
Guidelines for Guidelines Process.

The GDG will be responsible for overseeing the update of the GDG. The role of a GDG member
includes providing input into planning, advice in relation to Guideline activities, feedback on
summarised information gathered through research and community consultation activities, and
feedback on draft documents. Additional roles, where relevant, may be negotiated with the co-
Chairs based on members’ interests, experience, and expertise. Each member of the GDG will be
responsible for abiding by the Terms of Reference, attending monthly meetings, reviewing
documents, and providing endorsement or otherwise of the final documents. The specific role,
responsibilities, and accessibility will be considered in an individualised way for each GDG member.

Purpose
Autism CRC has asked A/Prof David Trembath and Dr Emma Goodall to form a GDG that will be
responsible for leading the update of the National Guideline for the Assessment and Diagnosis of
Autism Spectrum Disorders in Australia. The GDG will exist for the duration of the project.

Anticipated timeline for the project

The project commenced on 01/09/22 and will be completed on 30/06/23. The initial phase of the
project involves establishing the GDG. The work of each individual GDG member will commence on
the date of signing and returning (via email) this Terms of Reference and conclude on 30/06/23.

Membership of the Guideline Development Group

Membership of the Guideline Development Group is informed by the ‘Guideline for Guidelines’
recommendations provided by the National health and Medical Research Council. The Guideline
Development Group will comprise A/Prof David Trembath (co-chair) and Dr Emma Goodall (co-chair),
autistic people, family members of autistic people, at least one First Nations person, clinicians,
clinician-researchers, an expert in ethics, and at least one original author of the ADG.

2
Appointment of Co-Chairs
The co-chairs of the Guideline Development Group are A/Prof David Trembath and Dr Emma Goodall.,
who will each have clearly delegated duties.

Responsibilities of Project Team Members

A/Prof Trembath (co-Chair) will:
• Assume overall responsibility for governance and delivering the project.
• Guide and contribute to the day-to-day research activities for the project.
• Coordinate and chair meetings with the Reference Group.
• Coordinate engagement with stakeholders external to the Guideline Development Group,
including (but not limited to) the Reference Group, the Autism CRC, the National Health and
Medical Research Council, and the National Disability Insurance Agency.
• Line manage staff employed by Griffith University to work on the Guideline.

Dr Emma Goodall (co-Chair) will:

• Contribute to Governance of the GDG.
• Guide and contribute to the day-to-day research activities for the project.
• Chair meetings of the Guideline Development Group.

Other members of the Guideline Development Group:

• Attend meetings as required throughout the duration of the project (all).
• Provide input in the areas of expertise and experience they bring to the Guideline
Development Group.
• Respond to ‘out of meeting’ emails from co-Chairs requesting guidance.
• Provide feedback on documents that are prepared for the Guideline within agreed.
timeframes (typically 5-10 business days).

Meetings
The Guideline Development Group will meet monthly via videoconference. A quorum will be a
majority of the Members present via videoconference, including one of the co-Chairs.

Code of conduct for the Project Team

The Guideline Development Group recognises that this is a sensitive project that requires
completion within a relatively short timeframe. As such, the Guideline Development Group agrees to
the following:
• Conflicts of interest will be declared at the outset of the project, and be updated as any new
potential conflicts emerge.
• All communication between Guideline Development Group members will be conducted in a
respectful, constructive and cooperative way, and avoiding self-interest.
• The guideline generated by the Guideline Development Group will be based on a balanced
evaluation of the strength of the evidence.
• All discussions within the Project Team will remain confidential to that Project Team until the
conclusion of the project.

Reporting
The Project Team reports to the Autism CRC Ltd Board.

By signing below, I indicate that I agree to these Terms of reference.

Name
Signature

3
 Update of the National Guideline for the Assessment and Diagnosis of Autism in
Australia

Appendix 2.2 Guideline Development Group – Declaration of Interests

 Page 1 of 4

Autism CRC Update: Assessment and Diagnosis Guideline

Disclosure of Interests

Date: 6 February 2023

First Name: Gary
Surname: Allen

Origin of Form
This form has been adapted (including direct replication of text where relevant) from:

• The International Committee of Medical Journal Editors (ICMJE) disclosure of interest form
(https://www.icmje.org/disclosure-of-interest/)
• The Cochrane Collaboration Disclosure of Potential Conflicts of Interest form
(https://community.cochrane.org/sites/default/files/uploads/EPPR/Cochrane-COI-disclosure-
form.pdf)
Instructions
The purpose of this form is to provide readers of your review with information about your other
interests that could influence how they receive and understand your work. We ask you to disclose all
relationships/activities/interests listed below that are related to your involvement in the update of the
Autism CRC National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia (herein referred to as the guideline). “Related” means any relation with for-profit or not-for-
profit third parties whose interests may be affected by the content of the guideline. Disclosure
represents a commitment to transparency and does not necessarily indicate a bias. Please think
broadly when disclosing all relationships/activities/interests that may be relevant to your involvement
in the guideline. If you are in doubt about whether to list a relationship/activity/interest, it is
preferable that you do so.
Each person will be asked to complete their own form and you are responsible for the accuracy and
completeness. In submitting this form, you certify that you have answered every question and have
not altered the wording of any of the questions on this form.
If new interests arise during the project, you are required to submit an updated form.
1. Support for your involvement in the update of the guideline.
This section asks for information about your role in the update of the guideline. The time frame for
this reporting is that of the work itself, from the point at which you became involved in the update. If
you worked on the original Guideline, you will have disclosed your interests related to that work
previously, and so please focus on your involvement in the update in this form.
The requested information is about resources that you received, either directly or indirectly (via your
institution), to enable you to complete the work. Writing "None" means that you did the work without
receiving any financial support from any third party -- that is, the work was supported by funds from
the same institution that pays your salary and that institution did not receive third-party funds with
which to pay you. If you or your institution received funds from a third party to support the work,
such as a government granting agency, charitable foundation or commercial sponsor, then provide the
details. For example, if you will receive an honorarium from Autism CRC in relation to your
involvement, you would name Autism CRC and then indicate the amount of funds you will receive.
The honorarium for members of the GDG who will be accepting an honorarium is $2,000 (AUD).
 Page 2 of 4

Did you or your institution at any time receive payment or services from a third party for any aspect
of your involvement in the development of the guideline?
Please add more rows if necessary.

Support Name all entities that provided Description of support (e.g., amount
support (or indicate none) of funding, time in lieu)
Grant Pine Rivers and Samford $8,500
Community Grant

DESBT, Queensland $29,200

Government

Moreton Bay Council $3,500

Consulting fee or Various Australian universities

honorarium and research institutions. As
well as institutions in Aotearoa
New Zealand, the UK,
Kazakhstan and across Asia.

Support for travel to

meetings for the
guideline or other
purposes
Other Fiverr $27,000

Outcomes Australia $4,000

2. Relevant financial activities outside the guideline (2019-2022)

This section asks about your financial relationships with entities in the field of autism that could be
perceived to influence, or that give the appearance of potentially influencing, your involvement in the
the guideline. These relationships may include clinical service providers; companies that sell products
that autistic people, their families, or service providers may purchase; and organisations that represent
and/or advocate for autistic people, their families, and/or service providers. You should disclose
interactions with ANY entity that could be considered broadly relevant to the work. Report all sources
of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36
months prior to commencing work on the update of the guideline, and up until the point it will be
submitted to Autism CRC (i.e., 2020-2023). This should include all monies from sources with
relevance to the guideline, not just monies from Autism CRC which sponsored the research. Please
note that your interactions with Autism CRC that are outside the guideline should also be listed here.
If there is any question, please disclose the relationship. For grants you have received for work
outside the guideline, you should disclose support only from entities that could be perceived to be
affected financially by the published work, such as Government departments and agencies (e.g.,
National Disability Insurance Scheme), service providers, companies, business (including where self-
employed), or foundations supported by entities that could be perceived to have a financial stake in
the outcome.

Activities Name all entities with whom Specifications/comments

you have this relationship or (e.g., description of support,
 Page 3 of 4

indicate none (add rows as if payments were made to

needed) you or your institution)
Grants or contracts from any
entity (if not indicated in item
#1 above).
Royalties or licenses

Consulting fees Silver Chain To AHRECS

Payment or honoraria for Paid member of the Australian Me personally

lectures, presentations, Health Ethics Committee of the
speakers’ bureaus, manuscript NHMRC.
writing or educational events
Paid member of the National
Statement Review Committee

Paid member of both the NEA

and the Health Ethics
Application form.

Paid trainer of the NHMRC.

Paid member of the National

Mutual Acceptance advisory
committee
Payment for expert testimony

Support for attending meetings

and/or travel
Patents planned, issued or
pending
Participation on a Data Safety
Monitoring Board or Advisory
Board
Leadership or fiduciary role in CEO and Co-Founder of
other board, society, committee Enabled.vip
or advocacy group, paid or
unpaid
Stock or stock options

Receipt of equipment,
materials, drugs, medical
writing, gifts or other services

3. Relevant other activities or relationships, including non-financial relationships (no time

limit)
Are there other relationships or activities that readers could be perceived to have influenced, or that
could give the appearance of potentially influencing, your involvement in the guideline? If so, please
specify.

Activity Specifications/comments (e.g., description of

the relationship/activity/organisations
involved)
 Page 4 of 4

Development, delivery, evaluation, and/or Editor of the AHRECS resource library and
distribution of any clinical tools, training Co-editor of the Research Ethics Monthly
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of Senior consultant and trainer at AHRECS
autism
A personal relationship with another person
(e.g., spouse, family member) involved in the
development, delivery, evaluation, and/or
distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
Development and/or delivery of professional Senior consultant and trainer at AHRECS
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
A personal relationship with another person
(e.g., spouse, family member) involved in the
development and/or delivery of professional
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
Personal and/or family interest in assessment
and diagnosis, such as accessing clinical
services that may be covered in the guideline
Other (please make any further declarations that
may be relevant)

Declaration
If your answer is different from 'No' to any of the questions above, you may have a competing interest
which should be declared. These will be reviewed by the co-Chairs of the Guideline Development
Group. If the co-Chairs have answered other than ‘none’ to any of the questions above, these will be
reviewed by three members of the Guideline Development Group. In each case, appropriate processes
will be put in place to manage any conflicts arising.
 Page 1 of 4

Autism CRC Update: Assessment and Diagnosis Guideline

Disclosure of Interests

Date: 08/11/2022
First Name: Nicole
Surname: Dargue

Origin of Form
This form has been adapted (including direct replication of text where relevant) from:

• The International Committee of Medical Journal Editors (ICMJE) disclosure of interest form
(https://www.icmje.org/disclosure-of-interest/)
• The Cochrane Collaboration Disclosure of Potential Conflicts of Interest form
(https://community.cochrane.org/sites/default/files/uploads/EPPR/Cochrane-COI-disclosure-
form.pdf)
Instructions
The purpose of this form is to provide readers of your review with information about your other
interests that could influence how they receive and understand your work. We ask you to disclose all
relationships/activities/interests listed below that are related to your involvement in the update of the
Autism CRC National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia (herein referred to as the guideline). “Related” means any relation with for-profit or not-for-
profit third parties whose interests may be affected by the content of the guideline. Disclosure
represents a commitment to transparency and does not necessarily indicate a bias. Please think
broadly when disclosing all relationships/activities/interests that may be relevant to your involvement
in the guideline. If you are in doubt about whether to list a relationship/activity/interest, it is
preferable that you do so.
Each person will be asked to complete their own form and you are responsible for the accuracy and
completeness. In submitting this form, you certify that you have answered every question and have
not altered the wording of any of the questions on this form.
If new interests arise during the project, you are required to submit an updated form.
1. Support for your involvement in the update of the guideline.
This section asks for information about your role in the update of the guideline. The time frame for
this reporting is that of the work itself, from the point at which you became involved in the update. If
you worked on the original Guideline, you will have disclosed your interests related to that work
previously, and so please focus on your involvement in the update in this form.
The requested information is about resources that you received, either directly or indirectly (via your
institution), to enable you to complete the work. Writing "None" means that you did the work without
receiving any financial support from any third party -- that is, the work was supported by funds from
the same institution that pays your salary and that institution did not receive third-party funds with
which to pay you. If you or your institution received funds from a third party to support the work,
such as a government granting agency, charitable foundation or commercial sponsor, then provide the
details. For example, if you will receive an honorarium from Autism CRC in relation to your
involvement, you would name Autism CRC and then indicate the amount of funds you will receive.
The honorarium for members of the GDG who will be accepting an honorarium is $2,000 (AUD).
 Page 2 of 4

Did you or your institution at any time receive payment or services from a third party for any aspect
of your involvement in the development of the guideline?
Please add more rows if necessary.

Support Name all entities that provided Description of support (e.g., amount
support (or indicate none) of funding, time in lieu)
Grant Autism CRC Limited paid to Total project value $252,025 paid to
Griffith University Griffith University
Consulting fee or none
honorarium
Support for travel to none
meetings for the
guideline or other
purposes
Other none

2. Relevant financial activities outside the guideline (2019-2022)

This section asks about your financial relationships with entities in the field of autism that could be
perceived to influence, or that give the appearance of potentially influencing, your involvement in the
the guideline. These relationships may include clinical service providers; companies that sell products
that autistic people, their families, or service providers may purchase; and organisations that represent
and/or advocate for autistic people, their families, and/or service providers. You should disclose
interactions with ANY entity that could be considered broadly relevant to the work. Report all sources
of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36
months prior to commencing work on the update of the guideline, and up until the point it will be
submitted to Autism CRC (i.e., 2020-2023). This should include all monies from sources with
relevance to the guideline, not just monies from Autism CRC which sponsored the research. Please
note that your interactions with Autism CRC that are outside the guideline should also be listed here.
If there is any question, please disclose the relationship. For grants you have received for work
outside the guideline, you should disclose support only from entities that could be perceived to be
affected financially by the published work, such as Government departments and agencies (e.g.,
National Disability Insurance Scheme), service providers, companies, business (including where self-
employed), or foundations supported by entities that could be perceived to have a financial stake in
the outcome.

Activities Name all entities with whom Specifications/comments

you have this relationship or (e.g., description of support,
indicate none (add rows as if payments were made to
needed) you or your institution)
Grants or contracts from any none
entity (if not indicated in item
#1 above).
Royalties or licenses none
Consulting fees none
Payment or honoraria for none
lectures, presentations,
speakers’ bureaus, manuscript
writing or educational events
Payment for expert testimony none
Support for attending meetings none
and/or travel
 Page 3 of 4

Patents planned, issued or none

pending
Participation on a Data Safety none
Monitoring Board or Advisory
Board
Leadership or fiduciary role in none
other board, society, committee
or advocacy group, paid or
unpaid
Grants or contracts from any none
entity (if not indicated in item
#1 above).
Royalties or licenses none
Consulting fees none
Payment or honoraria for none
lectures, presentations,
speakers bureaus, manuscript
writing or educational events
Payment for expert testimony none
Support for attending meetings none
and/or travel
Patents planned, issued or none
pending
Participation on a Data Safety none
Monitoring Board or Advisory
Board
Leadership or fiduciary role in none
other board, society, committee
or advocacy group, paid or
unpaid
Stock or stock options none
Receipt of equipment, none
materials, drugs, medical
writing, gifts or other services

3. Relevant other activities or relationships, including non-financial relationships (no time

limit)
Are there other relationships or activities that readers could be perceived to have influenced, or that
could give the appearance of potentially influencing, your involvement in the guideline? If so, please
specify.

Activity Specifications/comments (e.g., description of

the relationship/activity/organisations
involved)
Development, delivery, evaluation, and/or no
distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
A personal relationship with another person no
(e.g., spouse, family member) involved in the
development, delivery, evaluation, and/or
distribution of any clinical tools, training
 Page 4 of 4

manuals, resources, and/or technology that may

be relevant to assessment and diagnosis of
autism
Development and/or delivery of professional no
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
A personal relationship with another person no
(e.g., spouse, family member) involved in the
development and/or delivery of professional
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
Personal and/or family interest in assessment no
and diagnosis, such as accessing clinical
services that may be covered in the guideline
Other (please make any further declarations that none
may be relevant)

Declaration
If your answer is different from 'No' to any of the questions above, you may have a competing interest
which should be declared. These will be reviewed by the co-Chairs of the Guideline Development
Group. If the co-Chairs have answered other than ‘none’ to any of the questions above, these will be
reviewed by three members of the Guideline Development Group. In each case, appropriate processes
will be put in place to manage any conflicts arising.
 Page 1 of 4

Autism CRC Update: Assessment and Diagnosis Guideline

Disclosure of Interests

Date: 31.01.23
First Name: Valsamma
Surname: Eapen

Origin of Form
This form has been adapted (including direct replication of text where relevant) from:

• The International Committee of Medical Journal Editors (ICMJE) disclosure of interest form
(https://www.icmje.org/disclosure-of-interest/)
• The Cochrane Collaboration Disclosure of Potential Conflicts of Interest form
(https://community.cochrane.org/sites/default/files/uploads/EPPR/Cochrane-COI-disclosure-
form.pdf)
Instructions
The purpose of this form is to provide readers of your review with information about your other
interests that could influence how they receive and understand your work. We ask you to disclose all
relationships/activities/interests listed below that are related to your involvement in the update of the
Autism CRC National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia (herein referred to as the guideline). “Related” means any relation with for-profit or not-for-
profit third parties whose interests may be affected by the content of the guideline. Disclosure
represents a commitment to transparency and does not necessarily indicate a bias. Please think
broadly when disclosing all relationships/activities/interests that may be relevant to your involvement
in the guideline. If you are in doubt about whether to list a relationship/activity/interest, it is
preferable that you do so.
Each person will be asked to complete their own form and you are responsible for the accuracy and
completeness. In submitting this form, you certify that you have answered every question and have
not altered the wording of any of the questions on this form.
If new interests arise during the project, you are required to submit an updated form.
1. Support for your involvement in the update of the guideline.
This section asks for information about your role in the update of the guideline. The time frame for
this reporting is that of the work itself, from the point at which you became involved in the update. If
you worked on the original Guideline, you will have disclosed your interests related to that work
previously, and so please focus on your involvement in the update in this form.
The requested information is about resources that you received, either directly or indirectly (via your
institution), to enable you to complete the work. Writing "None" means that you did the work without
receiving any financial support from any third party -- that is, the work was supported by funds from
the same institution that pays your salary and that institution did not receive third-party funds with
which to pay you. If you or your institution received funds from a third party to support the work,
such as a government granting agency, charitable foundation or commercial sponsor, then provide the
details. For example, if you will receive an honorarium from Autism CRC in relation to your
involvement, you would name Autism CRC and then indicate the amount of funds you will receive.
The honorarium for members of the GDG who will be accepting an honorarium is $2,000 (AUD).
 Page 2 of 4

Did you or your institution at any time receive payment or services from a third party for any aspect
of your involvement in the development of the guideline?
Please add more rows if necessary.

Support Name all entities that provided Description of support (e.g., amount
support (or indicate none) of funding, time in lieu)
Grant

Consulting fee or $2000

honorarium
Autism CRC
Support for travel to
meetings for the
guideline or other
purposes
Other

2. Relevant financial activities outside the guideline (2019-2022)

This section asks about your financial relationships with entities in the field of autism that could be
perceived to influence, or that give the appearance of potentially influencing, your involvement in the
the guideline. These relationships may include clinical service providers; companies that sell products
that autistic people, their families, or service providers may purchase; and organisations that represent
and/or advocate for autistic people, their families, and/or service providers. You should disclose
interactions with ANY entity that could be considered broadly relevant to the work. Report all sources
of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36
months prior to commencing work on the update of the guideline, and up until the point it will be
submitted to Autism CRC (i.e., 2020-2023). This should include all monies from sources with
relevance to the guideline, not just monies from Autism CRC which sponsored the research. Please
note that your interactions with Autism CRC that are outside the guideline should also be listed here.
If there is any question, please disclose the relationship. For grants you have received for work
outside the guideline, you should disclose support only from entities that could be perceived to be
affected financially by the published work, such as Government departments and agencies (e.g.,
National Disability Insurance Scheme), service providers, companies, business (including where self-
employed), or foundations supported by entities that could be perceived to have a financial stake in
the outcome.

Activities Name all entities with whom Specifications/comments

you have this relationship or (e.g., description of support,
indicate none (add rows as if payments were made to
needed) you or your institution)
Grants or contracts from any Director, Autism CRC and CRC grant
entity (if not indicated in item research lead for Autism
#1 above). Surveillance program via GP
clinics
Royalties or licenses

Consulting fees

Payment or honoraria for

lectures, presentations,
 Page 3 of 4

speakers’ bureaus, manuscript

writing or educational events
Payment for expert testimony

Support for attending meetings

and/or travel
Patents planned, issued or
pending
Participation on a Data Safety
Monitoring Board or Advisory
Board
Leadership or fiduciary role in DSS Expert Advisory group Committee member
other board, society, committee for the implementation of
or advocacy group, paid or National Autism Guideline
unpaid
Stock or stock options

Receipt of equipment,
materials, drugs, medical
writing, gifts or other services

3. Relevant other activities or relationships, including non-financial relationships (no time

limit)
Are there other relationships or activities that readers could be perceived to have influenced, or that
could give the appearance of potentially influencing, your involvement in the guideline? If so, please
specify.

Activity Specifications/comments (e.g., description of

the relationship/activity/organisations
involved)
Development, delivery, evaluation, and/or Watch Me Grow Electronic platform –
distribution of any clinical tools, training development and evaluation
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
A personal relationship with another person No
(e.g., spouse, family member) involved in the
development, delivery, evaluation, and/or
distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
Development and/or delivery of professional Teaching material, publications and
preparation programs that may be relevant to the presentation slides on the topic of assessment
guideline (e.g., allied health professional and diagnosis of neurodevelopmental disorders
preparation programs that include training in including autism
assessment and diagnosis of autism)
A personal relationship with another person No
(e.g., spouse, family member) involved in the
development and/or delivery of professional
preparation programs that may be relevant to the
guideline (e.g., allied health professional
 Page 4 of 4

preparation programs that include training in

assessment and diagnosis of autism)
Personal and/or family interest in assessment No
and diagnosis, such as accessing clinical
services that may be covered in the guideline
Other (please make any further declarations that Nil
may be relevant)

Declaration
If your answer is different from 'No' to any of the questions above, you may have a competing interest
which should be declared. These will be reviewed by the co-Chairs of the Guideline Development
Group. If the co-Chairs have answered other than ‘none’ to any of the questions above, these will be
reviewed by three members of the Guideline Development Group. In each case, appropriate processes
will be put in place to manage any conflicts arising.
 Page 1 of 7

Autism CRC Update: Assessment and Diagnosis Guideline

Disclosure of Interests

Date: 11 November 2022

First Name: Kiah
Surname: Evans

Origin of Form
This form has been adapted (including direct replication of text where relevant) from:

• The International Committee of Medical Journal Editors (ICMJE) disclosure of interest form
(https://www.icmje.org/disclosure-of-interest/)
• The Cochrane Collaboration Disclosure of Potential Conflicts of Interest form
(https://community.cochrane.org/sites/default/files/uploads/EPPR/Cochrane-COI-disclosure-
form.pdf)
Instructions
The purpose of this form is to provide readers of your review with information about your other
interests that could influence how they receive and understand your work. We ask you to disclose all
relationships/activities/interests listed below that are related to your involvement in the update of the
Autism CRC National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia (herein referred to as the guideline). “Related” means any relation with for-profit or not-for-
profit third parties whose interests may be affected by the content of the guideline. Disclosure
represents a commitment to transparency and does not necessarily indicate a bias. Please think
broadly when disclosing all relationships/activities/interests that may be relevant to your involvement
in the guideline. If you are in doubt about whether to list a relationship/activity/interest, it is
preferable that you do so.
Each person will be asked to complete their own form and you are responsible for the accuracy and
completeness. In submitting this form, you certify that you have answered every question and have
not altered the wording of any of the questions on this form.
If new interests arise during the project, you are required to submit an updated form.
1. Support for your involvement in the update of the guideline.
This section asks for information about your role in the update of the guideline. The time frame for
this reporting is that of the work itself, from the point at which you became involved in the update. If
you worked on the original Guideline, you will have disclosed your interests related to that work
previously, and so please focus on your involvement in the update in this form.
The requested information is about resources that you received, either directly or indirectly (via your
institution), to enable you to complete the work. Writing "None" means that you did the work without
receiving any financial support from any third party -- that is, the work was supported by funds from
the same institution that pays your salary and that institution did not receive third-party funds with
which to pay you. If you or your institution received funds from a third party to support the work,
such as a government granting agency, charitable foundation or commercial sponsor, then provide the
details. For example, if you will receive an honorarium from Autism CRC in relation to your
involvement, you would name Autism CRC and then indicate the amount of funds you will receive.
The honorarium for members of the GDG who will be accepting an honorarium is $2,000 (AUD).
 Page 2 of 7

Did you or your institution at any time receive payment or services from a third party for any aspect
of your involvement in the development of the guideline?
Please add more rows if necessary.

Support Name all entities that provided Description of support (e.g., amount
support (or indicate none) of funding, time in lieu)
Grant
Consulting fee or Autism CRC $2,000 (AUD) honorarium
honorarium
Support for travel to
meetings for the
guideline or other
purposes
Other

2. Relevant financial activities outside the guideline (2019-2022)

This section asks about your financial relationships with entities in the field of autism that could be
perceived to influence, or that give the appearance of potentially influencing, your involvement in the
the guideline. These relationships may include clinical service providers; companies that sell products
that autistic people, their families, or service providers may purchase; and organisations that represent
and/or advocate for autistic people, their families, and/or service providers. You should disclose
interactions with ANY entity that could be considered broadly relevant to the work. Report all sources
of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36
months prior to commencing work on the update of the guideline, and up until the point it will be
submitted to Autism CRC (i.e., 2020-2023). This should include all monies from sources with
relevance to the guideline, not just monies from Autism CRC which sponsored the research. Please
note that your interactions with Autism CRC that are outside the guideline should also be listed here.
If there is any question, please disclose the relationship. For grants you have received for work
outside the guideline, you should disclose support only from entities that could be perceived to be
affected financially by the published work, such as Government departments and agencies (e.g.,
National Disability Insurance Scheme), service providers, companies, business (including where self-
employed), or foundations supported by entities that could be perceived to have a financial stake in
the outcome.

Activities Name all entities with whom Specifications/comments

you have this relationship or (e.g., description of support,
indicate none (add rows as if payments were made to
needed) you or your institution)
Grants or contracts from any Autism CRC Chief Investigator and actively
entity (if not indicated in item involved in the following
#1 above). grants that were either awarded
or work was undertaken during
this period:
• ‘Reliability, Validity and
Usability of Assessment of
Functioning Tools for
Autism Spectrum Disorder
and Developmental Delay
in the Australian Context’
• ‘Autism Spectrum
Disorder Diagnostic
 Page 3 of 7

Inconsistencies in New
Zealand’
• ‘Development of an
Assessment of Functioning
Tool Based on the ICF
Core Sets for ASD’

Other grants in which I was a

named investigator during this
period that may be considered
related include:
• ‘A Multistate Trial of an
Early Surveillance
Program for Autism within
General Practices in
Australia’
• ‘Development of an
Autism Specific Quality of
Life Assessment for Use
with Autistic Adults’

Grants or contracts from any NDIA Contributing researcher on the

entity (if not indicated in item following grant that was
#1 above). awarded and completed during
this period:
• ‘Review of the information
requirements of the NDIS
Act 2013 (the Act) and
associated Rules’

Grants or contracts from any Telethon Kids Institute Chief or contributing

entity (if not indicated in item investigator on the following
#1 above). grants that were awarded
and/or completed during this
period:
• ‘Working Towards a Shared
Framework in the Diagnosis
of Neurodevelopmental
Disorders in Australia: A Gap
Analysis’
• ‘Precision Pathways for
Children at Risk of
Neurodevelopmental
Disorders’

Grants or contracts from any WA Child Research Fund – Named investigator on the
entity (if not indicated in item Government of Western Australia: following grant that was
#1 above). Department of Health awarded and/or commenced
during this period:
• ‘ORIGINS of
neurodevelopmental risk and
resilience: Examining
neurodevelopmental
trajectories of infants in the
ORIGINS cohort’
 Page 4 of 7

Royalties or licenses No
Consulting fees Centre for Creative Initiatives Named and contributing
in Health and Population investigator on:
(Vietnam), using funding • ‘I – Thrive:
obtained from USAID Interdisciplinary
Rehabilitation Services
Supporting Children with
Intellectual and
Developmental Disabilities
to Thrive’

Description of engagement:
• Technical expert (guideline
development process, desk
review of autism
identification, assessment,
intervention and
management – based on
existing guidelines)
• Supported development of
‘Ministry of Health.
(2022). Guidelines for
diagnosis and intervention
for children with autism
spectrum disorder
(1862/QD-BYT). Author:
Hanoi, Vietnam.’
• Funds were paid directly to
my employer at the time
(Telethon Kids Institute) in
compensation for my time
spent on the project (e.g.
salary, on-costs,
infrastructure). A small
proportion of these funds
were distributed to a
project code that I could
use for discretionary costs
(e.g. professional
development, conference
travel).

Payment or honoraria for No

lectures, presentations,
speakers’ bureaus, manuscript
writing or educational events
Payment for expert testimony No
Support for attending meetings Telethon Kids Institute As mentioned above,
and/or travel consultancy payments from the
project with Vietnam resulted
in some discretionary funds
that I plan to use to pay for
travel expenses to attend an
international conference
 Page 5 of 7

Patents planned, issued or No

pending
Participation on a Data Safety No
Monitoring Board or Advisory
Board
Leadership or fiduciary role in No
other board, society, committee
or advocacy group, paid or
unpaid
Stock or stock options No
Receipt of equipment, No
materials, drugs, medical
writing, gifts or other services

3. Relevant other activities or relationships, including non-financial relationships (no time

limit)
Are there other relationships or activities that readers could be perceived to have influenced, or that
could give the appearance of potentially influencing, your involvement in the guideline? If so, please
specify.

Activity Specifications/comments (e.g., description of

the relationship/activity/organisations
involved)
Development, delivery, evaluation, and/or The following publications report on the
distribution of any clinical tools, training evaluation of assessment of functioning tools
manuals, resources, and/or technology that may (projects listed above):
be relevant to assessment and diagnosis of • Evans, K., Chamberlain, A., D’Arcy, E.,
autism Hayden-Evans, M., Girdler, S., Milbourn, B.,
Taylor, S., Bölte, S., & Whitehouse, A.
(2020). Reliability, Validity and Usability of
Assessment of Functioning Tools for Autism
Spectrum Disorder and
Neurodevelopmental Conditions in
the Australian Context. Brisbane: Autism
CRC. [Please note that journal manuscripts
are under development based on this report]
• D’Arcy, E., Wallace, K., Chamberlain, A.,
Evans, K., Milbourn, B., Bölte, S.,
Whitehouse, A., & Girdler, S. (2021).
Content validation of common measures of
functioning for young children against the
International Classification of Functioning,
Disability and Health and Code and Core
Sets relevant to neurodevelopmental
conditions. Autism,
https://doi.org/10.1177/13623613211036809.
• Hayden-Evans, M., Milbourn, B., D’Arcy,
E., Chamberlain, A., Afsharnejad, B., Evans,
K., Whitehouse, A., Bölte, S., & Girdler, S.
(Manuscript Submitted). An evaluation of
the overall utility of measures of functioning
suitable for school-aged children on the
 Page 6 of 7

autism spectrum: A scoping review.

International Journal of Environmental
Research and Public Health,
https://doi.org/10.3390/ijerph192114114.

Related to these publications, I am a co-supervisor for

the following two Curtin PhD students who are
conducting research to develop and evaluate
assessment of functioning tools:
• Emily D’Arcy
• Maya Hayden-Evans

I have developed, piloted and utilised research tools to

assess functioning and support needs as part of my
Autism CRC grants listed above.

Many of the above co-authors / collaborators are

involved in other research projects related to assessing
functioning (including tools).

A personal relationship with another person No

(e.g., spouse, family member) involved in the
development, delivery, evaluation, and/or
distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
Development and/or delivery of professional • I delivered numerous professional presentations
preparation programs that may be relevant to to single discipline and interprofessional groups
the guideline (e.g., allied health professional about the original Guideline (during my role as
preparation programs that include training in coordinator of this project)
assessment and diagnosis of autism) • My PhD students delivered a conference
workshop for occupational therapists on
assessments of functioning, which I assisted to
develop
• I worked with Autism CRC to develop an
implementation toolkit and resources for the
original Guideline
(https://www.autismcrc.com.au/access/national-
guideline)
• I have held informal conversations with UWA
staff who deliver the Graduate Certificate in
Autism Diagnosis and are developing related
micro credentials about the autism assessment
and diagnostic process, which may have
contributed to their educational resources

A personal relationship with another person No

(e.g., spouse, family member) involved in the
development and/or delivery of professional
preparation programs that may be relevant to
the guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
Personal and/or family interest in assessment No
and diagnosis, such as accessing clinical
services that may be covered in the guideline
 Page 7 of 7

Other (please make any further declarations • I was employed as the coordinator of the original
that may be relevant) Guideline (which was paid for via an Autism
CRC grant and in-kind salary from Telethon
Kids) and as a result was a co-author of the final
documents.
• I have published numerous articles and delivered
numerous conference presentations about the
autism assessment and diagnostic process in
Australia and New Zealand (I would be happy to
provide details on request)
• I have been a peer reviewer for numerous
journals for manuscripts submitted about the
autism assessment and diagnostic process

Declaration
If your answer is different from 'No' to any of the questions above, you may have a competing interest
which should be declared. These will be reviewed by the co-Chairs of the Guideline Development
Group. If the co-Chairs have answered other than ‘none’ to any of the questions above, these will be
reviewed by three members of the Guideline Development Group. In each case, appropriate processes
will be put in place to manage any conflicts arising.
 Page 1 of 4

Autism CRC Update: Assessment and Diagnosis Guideline

Disclosure of Interests

Date: 30/01/2023
First Name: Will
Surname: Foster

Origin of Form
This form has been adapted (including direct replication of text where relevant) from:

• The International Committee of Medical Journal Editors (ICMJE) disclosure of interest form
(https://www.icmje.org/disclosure-of-interest/)
• The Cochrane Collaboration Disclosure of Potential Conflicts of Interest form
(https://community.cochrane.org/sites/default/files/uploads/EPPR/Cochrane-COI-disclosure-
form.pdf)
Instructions
The purpose of this form is to provide readers of your review with information about your other
interests that could influence how they receive and understand your work. We ask you to disclose all
relationships/activities/interests listed below that are related to your involvement in the update of the
Autism CRC National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia (herein referred to as the guideline). “Related” means any relation with for-profit or not-for-
profit third parties whose interests may be affected by the content of the guideline. Disclosure
represents a commitment to transparency and does not necessarily indicate a bias. Please think
broadly when disclosing all relationships/activities/interests that may be relevant to your involvement
in the guideline. If you are in doubt about whether to list a relationship/activity/interest, it is
preferable that you do so.
Each person will be asked to complete their own form and you are responsible for the accuracy and
completeness. In submitting this form, you certify that you have answered every question and have
not altered the wording of any of the questions on this form.
If new interests arise during the project, you are required to submit an updated form.
1. Support for your involvement in the update of the guideline.
This section asks for information about your role in the update of the guideline. The time frame for
this reporting is that of the work itself, from the point at which you became involved in the update. If
you worked on the original Guideline, you will have disclosed your interests related to that work
previously, and so please focus on your involvement in the update in this form.
The requested information is about resources that you received, either directly or indirectly (via your
institution), to enable you to complete the work. Writing "None" means that you did the work without
receiving any financial support from any third party -- that is, the work was supported by funds from
the same institution that pays your salary and that institution did not receive third-party funds with
which to pay you. If you or your institution received funds from a third party to support the work,
such as a government granting agency, charitable foundation or commercial sponsor, then provide the
details. For example, if you will receive an honorarium from Autism CRC in relation to your
involvement, you would name Autism CRC and then indicate the amount of funds you will receive.
The honorarium for members of the GDG who will be accepting an honorarium is $2,000 (AUD).
 Page 2 of 4

Did you or your institution at any time receive payment or services from a third party for any aspect
of your involvement in the development of the guideline?
Please add more rows if necessary.

Support Name all entities that provided Description of support (e.g., amount
support (or indicate none) of funding, time in lieu)
Grant
None
Consulting fee or $2,000
honorarium
Autism CRC
Support for travel to None
meetings for the
guideline or other
purposes
Other None

2. Relevant financial activities outside the guideline (2019-2022)

This section asks about your financial relationships with entities in the field of autism that could be
perceived to influence, or that give the appearance of potentially influencing, your involvement in the
the guideline. These relationships may include clinical service providers; companies that sell products
that autistic people, their families, or service providers may purchase; and organisations that represent
and/or advocate for autistic people, their families, and/or service providers. You should disclose
interactions with ANY entity that could be considered broadly relevant to the work. Report all sources
of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36
months prior to commencing work on the update of the guideline, and up until the point it will be
submitted to Autism CRC (i.e., 2020-2023). This should include all monies from sources with
relevance to the guideline, not just monies from Autism CRC which sponsored the research. Please
note that your interactions with Autism CRC that are outside the guideline should also be listed here.
If there is any question, please disclose the relationship. For grants you have received for work
outside the guideline, you should disclose support only from entities that could be perceived to be
affected financially by the published work, such as Government departments and agencies (e.g.,
National Disability Insurance Scheme), service providers, companies, business (including where self-
employed), or foundations supported by entities that could be perceived to have a financial stake in
the outcome.

Activities Name all entities with whom Specifications/comments

you have this relationship or (e.g., description of support,
indicate none (add rows as if payments were made to
needed) you or your institution)
Grants or contracts from any None
entity (if not indicated in item
#1 above).
Royalties or licenses None

Consulting fees None

Payment or honoraria for None

lectures, presentations,
 Page 3 of 4

speakers’ bureaus, manuscript

writing or educational events
Payment for expert testimony None

Support for attending meetings None

and/or travel
Patents planned, issued or None
pending
Participation on a Data Safety None
Monitoring Board or Advisory
Board
Leadership or fiduciary role in None
other board, society, committee
or advocacy group, paid or
unpaid
Stock or stock options
None

Receipt of equipment, None

materials, drugs, medical
writing, gifts or other services

3. Relevant other activities or relationships, including non-financial relationships (no time

limit)
Are there other relationships or activities that readers could be perceived to have influenced, or that
could give the appearance of potentially influencing, your involvement in the guideline? If so, please
specify.

Activity Specifications/comments (e.g., description of

the relationship/activity/organisations
involved)
Development, delivery, evaluation, and/or
distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
A personal relationship with another person Mother part of the GDG
(e.g., spouse, family member) involved in the
development, delivery, evaluation, and/or
distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
Development and/or delivery of professional
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
A personal relationship with another person
(e.g., spouse, family member) involved in the
development and/or delivery of professional
preparation programs that may be relevant to the
 Page 4 of 4

guideline (e.g., allied health professional

preparation programs that include training in
assessment and diagnosis of autism)
Personal and/or family interest in assessment
and diagnosis, such as accessing clinical
services that may be covered in the guideline
Other (please make any further declarations that
may be relevant)

Declaration
If your answer is different from 'No' to any of the questions above, you may have a competing interest
which should be declared. These will be reviewed by the co-Chairs of the Guideline Development
Group. If the co-Chairs have answered other than ‘none’ to any of the questions above, these will be
reviewed by three members of the Guideline Development Group. In each case, appropriate processes
will be put in place to manage any conflicts arising.
 Page 1 of 4

Autism CRC Update: Assessment and Diagnosis Guideline

Disclosure of Interests

Date: 15/12/2022
First Name: Emma
Surname: Goodall

Origin of Form
This form has been adapted (including direct replication of text where relevant) from:

• The International Committee of Medical Journal Editors (ICMJE) disclosure of interest form
(https://www.icmje.org/disclosure-of-interest/)
• The Cochrane Collaboration Disclosure of Potential Conflicts of Interest form
(https://community.cochrane.org/sites/default/files/uploads/EPPR/Cochrane-COI-disclosure-
form.pdf)
Instructions
The purpose of this form is to provide readers of your review with information about your other
interests that could influence how they receive and understand your work. We ask you to disclose all
relationships/activities/interests listed below that are related to your involvement in the update of the
Autism CRC National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia (herein referred to as the guideline). “Related” means any relation with for-profit or not-for-
profit third parties whose interests may be affected by the content of the guideline. Disclosure
represents a commitment to transparency and does not necessarily indicate a bias. Please think
broadly when disclosing all relationships/activities/interests that may be relevant to your involvement
in the guideline. If you are in doubt about whether to list a relationship/activity/interest, it is
preferable that you do so.
Each person will be asked to complete their own form and you are responsible for the accuracy and
completeness. In submitting this form, you certify that you have answered every question and have
not altered the wording of any of the questions on this form.
If new interests arise during the project, you are required to submit an updated form.
1. Support for your involvement in the update of the guideline.
This section asks for information about your role in the update of the guideline. The time frame for
this reporting is that of the work itself, from the point at which you became involved in the update. If
you worked on the original Guideline, you will have disclosed your interests related to that work
previously, and so please focus on your involvement in the update in this form.
The requested information is about resources that you received, either directly or indirectly (via your
institution), to enable you to complete the work. Writing "None" means that you did the work without
receiving any financial support from any third party -- that is, the work was supported by funds from
the same institution that pays your salary and that institution did not receive third-party funds with
which to pay you. If you or your institution received funds from a third party to support the work,
such as a government granting agency, charitable foundation or commercial sponsor, then provide the
details. For example, if you will receive an honorarium from Autism CRC in relation to your
involvement, you would name Autism CRC and then indicate the amount of funds you will receive.
The honorarium for members of the GDG who will be accepting an honorarium is $2,000 (AUD).
 Page 2 of 4

Did you or your institution at any time receive payment or services from a third party for any aspect
of your involvement in the development of the guideline?
Please add more rows if necessary.

Support Name all entities that provided Description of support (e.g., amount
support (or indicate none) of funding, time in lieu)
Grant Autism CRC project grant. $317,336
Consulting fee or
honorarium
Support for travel to
meetings for the
guideline or other
purposes
Other

2. Relevant financial activities outside the guideline (2019-2022)

This section asks about your financial relationships with entities in the field of autism that could be
perceived to influence, or that give the appearance of potentially influencing, your involvement in the
the guideline. These relationships may include clinical service providers; companies that sell products
that autistic people, their families, or service providers may purchase; and organisations that represent
and/or advocate for autistic people, their families, and/or service providers. You should disclose
interactions with ANY entity that could be considered broadly relevant to the work. Report all sources
of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36
months prior to commencing work on the update of the guideline, and up until the point it will be
submitted to Autism CRC (i.e., 2020-2023). This should include all monies from sources with
relevance to the guideline, not just monies from Autism CRC which sponsored the research. Please
note that your interactions with Autism CRC that are outside the guideline should also be listed here.
If there is any question, please disclose the relationship. For grants you have received for work
outside the guideline, you should disclose support only from entities that could be perceived to be
affected financially by the published work, such as Government departments and agencies (e.g.,
National Disability Insurance Scheme), service providers, companies, business (including where self-
employed), or foundations supported by entities that could be perceived to have a financial stake in
the outcome.

Activities Name all entities with whom Specifications/comments

you have this relationship or (e.g., description of support,
indicate none (add rows as if payments were made to
needed) you or your institution)
Grants or contracts from any no
entity (if not indicated in item
#1 above).
Royalties or licenses no
Consulting fees no
Payment or honoraria for no
lectures, presentations,
speakers’ bureaus, manuscript
writing or educational events
Payment for expert testimony no
Support for attending meetings no
and/or travel
 Page 3 of 4

Patents planned, issued or no

pending
Participation on a Data Safety Yes – unpaid CRC biobank
Monitoring Board or Advisory access committee
Board
Leadership or fiduciary role in Yes – exec committee Unpaid positions
other board, society, committee Australian Society for Autism
or advocacy group, paid or research unpaid, co-chair
unpaid Australian Autism Alliance
unpaid.
Grants or contracts from any Yes – contract as National Salaried position
entity (if not indicated in item Manager Content & Research
#1 above). Positive Partnerships.
Royalties or licenses no
Consulting fees no
Payment or honoraria for no
lectures, presentations,
speakers bureaus, manuscript
writing or educational events
Payment for expert testimony no
Support for attending meetings no
and/or travel
Patents planned, issued or no
pending
Participation on a Data Safety no
Monitoring Board or Advisory
Board
Leadership or fiduciary role in no
other board, society, committee
or advocacy group, paid or
unpaid
Stock or stock options no
Receipt of equipment, no
materials, drugs, medical
writing, gifts or other services

3. Relevant other activities or relationships, including non-financial relationships (no time

limit)
Are there other relationships or activities that readers could be perceived to have influenced, or that
could give the appearance of potentially influencing, your involvement in the guideline? If so, please
specify.

Activity Specifications/comments (e.g., description of

the relationship/activity/organisations
involved)
Development, delivery, evaluation, and/or no
distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
A personal relationship with another person no
(e.g., spouse, family member) involved in the
 Page 4 of 4

development, delivery, evaluation, and/or

distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
Development and/or delivery of professional no
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
A personal relationship with another person no
(e.g., spouse, family member) involved in the
development and/or delivery of professional
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
Personal and/or family interest in assessment no
and diagnosis, such as accessing clinical
services that may be covered in the guideline
Other (please make any further declarations that I am autistic and have an NDIS service
may be relevant) provider registered company – however I
currently only offer life coaching to autistic
adults or parents of autistic children through
this.

Declaration
If your answer is different from 'No' to any of the questions above, you may have a competing interest
which should be declared. These will be reviewed by the co-Chairs of the Guideline Development
Group. If the co-Chairs have answered other than ‘none’ to any of the questions above, these will be
reviewed by three members of the Guideline Development Group. In each case, appropriate processes
will be put in place to manage any conflicts arising.
 Page 1 of 4

Autism CRC Update: Assessment and Diagnosis Guideline

Disclosure of Interests

Date: 30/01/2023
First Name: Emma
Surname: Hinze

Origin of Form
This form has been adapted (including direct replication of text where relevant) from:

• The International Committee of Medical Journal Editors (ICMJE) disclosure of interest form
(https://www.icmje.org/disclosure-of-interest/)
• The Cochrane Collaboration Disclosure of Potential Conflicts of Interest form
(https://community.cochrane.org/sites/default/files/uploads/EPPR/Cochrane-COI-disclosure-
form.pdf)
Instructions
The purpose of this form is to provide readers of your review with information about your other
interests that could influence how they receive and understand your work. We ask you to disclose all
relationships/activities/interests listed below that are related to your involvement in the update of the
Autism CRC National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia (herein referred to as the guideline). “Related” means any relation with for-profit or not-for-
profit third parties whose interests may be affected by the content of the guideline. Disclosure
represents a commitment to transparency and does not necessarily indicate a bias. Please think
broadly when disclosing all relationships/activities/interests that may be relevant to your involvement
in the guideline. If you are in doubt about whether to list a relationship/activity/interest, it is
preferable that you do so.
Each person will be asked to complete their own form and you are responsible for the accuracy and
completeness. In submitting this form, you certify that you have answered every question and have
not altered the wording of any of the questions on this form.
If new interests arise during the project, you are required to submit an updated form.
1. Support for your involvement in the update of the guideline.
This section asks for information about your role in the update of the guideline. The time frame for
this reporting is that of the work itself, from the point at which you became involved in the update. If
you worked on the original Guideline, you will have disclosed your interests related to that work
previously, and so please focus on your involvement in the update in this form.
The requested information is about resources that you received, either directly or indirectly (via your
institution), to enable you to complete the work. Writing "None" means that you did the work without
receiving any financial support from any third party -- that is, the work was supported by funds from
the same institution that pays your salary and that institution did not receive third-party funds with
which to pay you. If you or your institution received funds from a third party to support the work,
such as a government granting agency, charitable foundation or commercial sponsor, then provide the
details. For example, if you will receive an honorarium from Autism CRC in relation to your
involvement, you would name Autism CRC and then indicate the amount of funds you will receive.
The honorarium for members of the GDG who will be accepting an honorarium is $2,000 (AUD).
 Page 2 of 4

Did you or your institution at any time receive payment or services from a third party for any aspect
of your involvement in the development of the guideline?
Please add more rows if necessary.

Support Name all entities that provided Description of support (e.g., amount
support (or indicate none) of funding, time in lieu)
Grant
None
Consulting fee or
honorarium None
Support for travel to None
meetings for the
guideline or other
purposes
Other None

2. Relevant financial activities outside the guideline (2019-2022)

This section asks about your financial relationships with entities in the field of autism that could be
perceived to influence, or that give the appearance of potentially influencing, your involvement in the
the guideline. These relationships may include clinical service providers; companies that sell products
that autistic people, their families, or service providers may purchase; and organisations that represent
and/or advocate for autistic people, their families, and/or service providers. You should disclose
interactions with ANY entity that could be considered broadly relevant to the work. Report all sources
of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36
months prior to commencing work on the update of the guideline, and up until the point it will be
submitted to Autism CRC (i.e., 2020-2023). This should include all monies from sources with
relevance to the guideline, not just monies from Autism CRC which sponsored the research. Please
note that your interactions with Autism CRC that are outside the guideline should also be listed here.
If there is any question, please disclose the relationship. For grants you have received for work
outside the guideline, you should disclose support only from entities that could be perceived to be
affected financially by the published work, such as Government departments and agencies (e.g.,
National Disability Insurance Scheme), service providers, companies, business (including where self-
employed), or foundations supported by entities that could be perceived to have a financial stake in
the outcome.

Activities Name all entities with whom Specifications/comments

you have this relationship or (e.g., description of support,
indicate none (add rows as if payments were made to
needed) you or your institution)
Grants or contracts from any None
entity (if not indicated in item
#1 above).
Royalties or licenses None

Consulting fees None

Payment or honoraria for None

lectures, presentations,
 Page 3 of 4

speakers’ bureaus, manuscript

writing or educational events
Payment for expert testimony None

Support for attending meetings None

and/or travel
Patents planned, issued or None
pending
Participation on a Data Safety None
Monitoring Board or Advisory
Board
Leadership or fiduciary role in None
other board, society, committee
or advocacy group, paid or
unpaid
Stock or stock options
None

Receipt of equipment, None

materials, drugs, medical
writing, gifts or other services

3. Relevant other activities or relationships, including non-financial relationships (no time

limit)
Are there other relationships or activities that readers could be perceived to have influenced, or that
could give the appearance of potentially influencing, your involvement in the guideline? If so, please
specify.

Activity Specifications/comments (e.g., description of

the relationship/activity/organisations
involved)
Development, delivery, evaluation, and/or
distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
A personal relationship with another person
(e.g., spouse, family member) involved in the
development, delivery, evaluation, and/or
distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
Development and/or delivery of professional
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
A personal relationship with another person
(e.g., spouse, family member) involved in the
development and/or delivery of professional
preparation programs that may be relevant to the
 Page 4 of 4

guideline (e.g., allied health professional

preparation programs that include training in
assessment and diagnosis of autism)
Personal and/or family interest in assessment Autistic Son
and diagnosis, such as accessing clinical
services that may be covered in the guideline
Other (please make any further declarations that
may be relevant)

Declaration
If your answer is different from 'No' to any of the questions above, you may have a competing interest
which should be declared. These will be reviewed by the co-Chairs of the Guideline Development
Group. If the co-Chairs have answered other than ‘none’ to any of the questions above, these will be
reviewed by three members of the Guideline Development Group. In each case, appropriate processes
will be put in place to manage any conflicts arising.
 Page 1 of 4

Autism CRC Update: Assessment and Diagnosis Guideline

Disclosure of Interests

Date: 09/11/2022
First Name: Wenn
Surname: Lawson

Origin of Form
This form has been adapted (including direct replication of text where relevant) from:

• The International Committee of Medical Journal Editors (ICMJE) disclosure of interest form
(https://www.icmje.org/disclosure-of-interest/)
• The Cochrane Collaboration Disclosure of Potential Conflicts of Interest form
(https://community.cochrane.org/sites/default/files/uploads/EPPR/Cochrane-COI-disclosure-
form.pdf)
Instructions
The purpose of this form is to provide readers of your review with information about your other
interests that could influence how they receive and understand your work. We ask you to disclose all
relationships/activities/interests listed below that are related to your involvement in the update of the
Autism CRC National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia (herein referred to as the guideline). “Related” means any relation with for-profit or not-for-
profit third parties whose interests may be affected by the content of the guideline. Disclosure
represents a commitment to transparency and does not necessarily indicate a bias. Please think
broadly when disclosing all relationships/activities/interests that may be relevant to your involvement
in the guideline. If you are in doubt about whether to list a relationship/activity/interest, it is
preferable that you do so.
Each person will be asked to complete their own form and you are responsible for the accuracy and
completeness. In submitting this form, you certify that you have answered every question and have
not altered the wording of any of the questions on this form.
If new interests arise during the project, you are required to submit an updated form.
1. Support for your involvement in the update of the guideline.
This section asks for information about your role in the update of the guideline. The time frame for
this reporting is that of the work itself, from the point at which you became involved in the update. If
you worked on the original Guideline, you will have disclosed your interests related to that work
previously, and so please focus on your involvement in the update in this form.
The requested information is about resources that you received, either directly or indirectly (via your
institution), to enable you to complete the work. Writing "None" means that you did the work without
receiving any financial support from any third party -- that is, the work was supported by funds from
the same institution that pays your salary and that institution did not receive third-party funds with
which to pay you. If you or your institution received funds from a third party to support the work,
such as a government granting agency, charitable foundation or commercial sponsor, then provide the
details. For example, if you will receive an honorarium from Autism CRC in relation to your
involvement, you would name Autism CRC and then indicate the amount of funds you will receive.
The honorarium for members of the GDG who will be accepting an honorarium is $2,000 (AUD).
 Page 2 of 4

Did you or your institution at any time receive payment or services from a third party for any aspect
of your involvement in the development of the guideline?
Please add more rows if necessary.

Support Name all entities that provided Description of support (e.g., amount
support (or indicate none) of funding, time in lieu)
Grant
Consulting fee or CRC $2000.00
honorarium
Support for travel to
meetings for the
guideline or other
purposes
Other

2. Relevant financial activities outside the guideline (2019-2022)

This section asks about your financial relationships with entities in the field of autism that could be
perceived to influence, or that give the appearance of potentially influencing, your involvement in the
the guideline. These relationships may include clinical service providers; companies that sell products
that autistic people, their families, or service providers may purchase; and organisations that represent
and/or advocate for autistic people, their families, and/or service providers. You should disclose
interactions with ANY entity that could be considered broadly relevant to the work. Report all sources
of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36
months prior to commencing work on the update of the guideline, and up until the point it will be
submitted to Autism CRC (i.e., 2020-2023). This should include all monies from sources with
relevance to the guideline, not just monies from Autism CRC which sponsored the research. Please
note that your interactions with Autism CRC that are outside the guideline should also be listed here.
If there is any question, please disclose the relationship. For grants you have received for work
outside the guideline, you should disclose support only from entities that could be perceived to be
affected financially by the published work, such as Government departments and agencies (e.g.,
National Disability Insurance Scheme), service providers, companies, business (including where self-
employed), or foundations supported by entities that could be perceived to have a financial stake in
the outcome.

Activities Name all entities with whom Specifications/comments

you have this relationship or (e.g., description of support,
indicate none (add rows as if payments were made to
needed) you or your institution)
Grants or contracts from any no
entity (if not indicated in item
#1 above).
Royalties or licenses no
Consulting fees no
Payment or honoraria for no
lectures, presentations,
speakers’ bureaus, manuscript
writing or educational events
Payment for expert testimony no
Support for attending meetings no
and/or travel
 Page 3 of 4

Patents planned, issued or no

pending
Participation on a Data Safety no
Monitoring Board or Advisory
Board
Leadership or fiduciary role in no
other board, society, committee
or advocacy group, paid or
unpaid
Grants or contracts from any no
entity (if not indicated in item
#1 above).
Royalties or licenses no
Consulting fees no
Payment or honoraria for no
lectures, presentations,
speakers bureaus, manuscript
writing or educational events
Payment for expert testimony no
Support for attending meetings no
and/or travel
Patents planned, issued or no
pending
Participation on a Data Safety no
Monitoring Board or Advisory
Board
Leadership or fiduciary role in no
other board, society, committee
or advocacy group, paid or
unpaid
Stock or stock options no
Receipt of equipment, no
materials, drugs, medical
writing, gifts or other services

3. Relevant other activities or relationships, including non-financial relationships (no time

limit)
Are there other relationships or activities that readers could be perceived to have influenced, or that
could give the appearance of potentially influencing, your involvement in the guideline? If so, please
specify.

Activity Specifications/comments (e.g., description of

the relationship/activity/organisations
involved)
Development, delivery, evaluation, and/or no
distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
A personal relationship with another person no
(e.g., spouse, family member) involved in the
development, delivery, evaluation, and/or
distribution of any clinical tools, training
 Page 4 of 4

manuals, resources, and/or technology that may

be relevant to assessment and diagnosis of
autism
Development and/or delivery of professional no
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
A personal relationship with another person no
(e.g., spouse, family member) involved in the
development and/or delivery of professional
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
Personal and/or family interest in assessment no
and diagnosis, such as accessing clinical
services that may be covered in the guideline
Other (please make any further declarations that no
may be relevant)

Declaration
If your answer is different from 'No' to any of the questions above, you may have a competing interest
which should be declared. These will be reviewed by the co-Chairs of the Guideline Development
Group. If the co-Chairs have answered other than ‘none’ to any of the questions above, these will be
reviewed by three members of the Guideline Development Group. In each case, appropriate processes
will be put in place to manage any conflicts arising.
 Page 1 of 4

Autism CRC Update: Assessment and Diagnosis Guideline

Disclosure of Interests

Date: 11/11/2022
First Name: Rhylee
Surname: Sulek

Origin of Form
This form has been adapted (including direct replication of text where relevant) from:

• The International Committee of Medical Journal Editors (ICMJE) disclosure of interest form
(https://www.icmje.org/disclosure-of-interest/)
• The Cochrane Collaboration Disclosure of Potential Conflicts of Interest form
(https://community.cochrane.org/sites/default/files/uploads/EPPR/Cochrane-COI-disclosure-
form.pdf)
Instructions
The purpose of this form is to provide readers of your review with information about your other
interests that could influence how they receive and understand your work. We ask you to disclose all
relationships/activities/interests listed below that are related to your involvement in the update of the
Autism CRC National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia (herein referred to as the guideline). “Related” means any relation with for-profit or not-for-
profit third parties whose interests may be affected by the content of the guideline. Disclosure
represents a commitment to transparency and does not necessarily indicate a bias. Please think
broadly when disclosing all relationships/activities/interests that may be relevant to your involvement
in the guideline. If you are in doubt about whether to list a relationship/activity/interest, it is
preferable that you do so.
Each person will be asked to complete their own form and you are responsible for the accuracy and
completeness. In submitting this form, you certify that you have answered every question and have
not altered the wording of any of the questions on this form.
If new interests arise during the project, you are required to submit an updated form.
1. Support for your involvement in the update of the guideline.
This section asks for information about your role in the update of the guideline. The time frame for
this reporting is that of the work itself, from the point at which you became involved in the update. If
you worked on the original Guideline, you will have disclosed your interests related to that work
previously, and so please focus on your involvement in the update in this form.
The requested information is about resources that you received, either directly or indirectly (via your
institution), to enable you to complete the work. Writing "None" means that you did the work without
receiving any financial support from any third party -- that is, the work was supported by funds from
the same institution that pays your salary and that institution did not receive third-party funds with
which to pay you. If you or your institution received funds from a third party to support the work,
such as a government granting agency, charitable foundation or commercial sponsor, then provide the
details. For example, if you will receive an honorarium from Autism CRC in relation to your
involvement, you would name Autism CRC and then indicate the amount of funds you will receive.
The honorarium for members of the GDG who will be accepting an honorarium is $2,000 (AUD).
 Page 2 of 4

Did you or your institution at any time receive payment or services from a third party for any aspect
of your involvement in the development of the guideline?
Please add more rows if necessary.

Support Name all entities that provided Description of support (e.g., amount
support (or indicate none) of funding, time in lieu)
Grant None
Consulting fee or None
honorarium
Support for travel to None
meetings for the
guideline or other
purposes
Other In-kind support through current
position at Griffith University

2. Relevant financial activities outside the guideline (2019-2022)

This section asks about your financial relationships with entities in the field of autism that could be
perceived to influence, or that give the appearance of potentially influencing, your involvement in the
the guideline. These relationships may include clinical service providers; companies that sell products
that autistic people, their families, or service providers may purchase; and organisations that represent
and/or advocate for autistic people, their families, and/or service providers. You should disclose
interactions with ANY entity that could be considered broadly relevant to the work. Report all sources
of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36
months prior to commencing work on the update of the guideline, and up until the point it will be
submitted to Autism CRC (i.e., 2020-2023). This should include all monies from sources with
relevance to the guideline, not just monies from Autism CRC which sponsored the research. Please
note that your interactions with Autism CRC that are outside the guideline should also be listed here.
If there is any question, please disclose the relationship. For grants you have received for work
outside the guideline, you should disclose support only from entities that could be perceived to be
affected financially by the published work, such as Government departments and agencies (e.g.,
National Disability Insurance Scheme), service providers, companies, business (including where self-
employed), or foundations supported by entities that could be perceived to have a financial stake in
the outcome.

Activities Name all entities with whom Specifications/comments

you have this relationship or (e.g., description of support,
indicate none (add rows as if payments were made to
needed) you or your institution)
Grants or contracts from any None
entity (if not indicated in item
#1 above).
Royalties or licenses None
Consulting fees None
Payment or honoraria for None
lectures, presentations,
speakers’ bureaus, manuscript
writing or educational events
Payment for expert testimony None
Support for attending meetings None
and/or travel
 Page 3 of 4

Patents planned, issued or None

pending
Participation on a Data Safety None
Monitoring Board or Advisory
Board
Leadership or fiduciary role in None
other board, society, committee
or advocacy group, paid or
unpaid
Stock or stock options None
Receipt of equipment, None
materials, drugs, medical
writing, gifts or other services

3. Relevant other activities or relationships, including non-financial relationships (no time

limit)
Are there other relationships or activities that readers could be perceived to have influenced, or that
could give the appearance of potentially influencing, your involvement in the guideline? If so, please
specify.

Activity Specifications/comments (e.g., description of

the relationship/activity/organisations
involved)
Development, delivery, evaluation, and/or None
distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
A personal relationship with another person None
(e.g., spouse, family member) involved in the
development, delivery, evaluation, and/or
distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
Development and/or delivery of professional None
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
A personal relationship with another person None
(e.g., spouse, family member) involved in the
development and/or delivery of professional
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
Personal and/or family interest in assessment None
and diagnosis, such as accessing clinical
services that may be covered in the guideline
Other (please make any further declarations that None
may be relevant)
 Page 4 of 4

Declaration
If your answer is different from 'No' to any of the questions above, you may have a competing interest
which should be declared. These will be reviewed by the co-Chairs of the Guideline Development
Group. If the co-Chairs have answered other than ‘none’ to any of the questions above, these will be
reviewed by three members of the Guideline Development Group. In each case, appropriate processes
will be put in place to manage any conflicts arising.
 Page 1 of 7

Autism CRC Update: Assessment and Diagnosis Guideline

Disclosure of Interests

Date: 11/11/22
First Name: David
Surname: Trembath

Origin of Form
This form has been adapted (including direct replication of text where relevant) from:

• The International Committee of Medical Journal Editors (ICMJE) disclosure of interest form
(https://www.icmje.org/disclosure-of-interest/)
• The Cochrane Collaboration Disclosure of Potential Conflicts of Interest form
(https://community.cochrane.org/sites/default/files/uploads/EPPR/Cochrane-COI-disclosure-
form.pdf)
Instructions
The purpose of this form is to provide readers of your review with information about your other
interests that could influence how they receive and understand your work. We ask you to disclose all
relationships/activities/interests listed below that are related to your involvement in the update of the
Autism CRC National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia (herein referred to as the guideline). “Related” means any relation with for-profit or not-for-
profit third parties whose interests may be affected by the content of the guideline. Disclosure
represents a commitment to transparency and does not necessarily indicate a bias. Please think
broadly when disclosing all relationships/activities/interests that may be relevant to your involvement
in the guideline. If you are in doubt about whether to list a relationship/activity/interest, it is
preferable that you do so.
Each person will be asked to complete their own form and you are responsible for the accuracy and
completeness. In submitting this form, you certify that you have answered every question and have
not altered the wording of any of the questions on this form.
If new interests arise during the project, you are required to submit an updated form.
1. Support for your involvement in the update of the guideline.
This section asks for information about your role in the update of the guideline. The time frame for
this reporting is that of the work itself, from the point at which you became involved in the update. If
you worked on the original Guideline, you will have disclosed your interests related to that work
previously, and so please focus on your involvement in the update in this form.
The requested information is about resources that you received, either directly or indirectly (via your
institution), to enable you to complete the work. Writing "None" means that you did the work without
receiving any financial support from any third party -- that is, the work was supported by funds from
the same institution that pays your salary and that institution did not receive third-party funds with
which to pay you. If you or your institution received funds from a third party to support the work,
such as a government granting agency, charitable foundation or commercial sponsor, then provide the
details. For example, if you will receive an honorarium from Autism CRC in relation to your
involvement, you would name Autism CRC and then indicate the amount of funds you will receive.
The honorarium for members of the GDG who will be accepting an honorarium is $2,000 (AUD).
 Page 2 of 7

Did you or your institution at any time receive payment or services from a third party for any aspect
of your involvement in the development of the guideline?
Please add more rows if necessary.

Support Name all entities that provided Description of support (e.g., amount
support (or indicate none) of funding, time in lieu)
Grant Autism CRC project grant. $317,336
Consulting fee or None
honorarium
Support for travel to None
meetings for the
guideline or other
purposes
Other None

2. Relevant financial activities outside the guideline (2019-2022)

This section asks about your financial relationships with entities in the field of autism that could be
perceived to influence, or that give the appearance of potentially influencing, your involvement in the
guideline. These relationships may include clinical service providers; companies that sell products
that autistic people, their families, or service providers may purchase; and organisations that represent
and/or advocate for autistic people, their families, and/or service providers. You should disclose
interactions with ANY entity that could be considered broadly relevant to the work. Report all sources
of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36
months prior to commencing work on the update of the guideline, and up until the point it will be
submitted to Autism CRC (i.e., 2020-2023). This should include all monies from sources with
relevance to the guideline, not just monies from Autism CRC which sponsored the research. Please
note that your interactions with Autism CRC that are outside the guideline should also be listed here.
If there is any question, please disclose the relationship. For grants you have received for work
outside the guideline, you should disclose support only from entities that could be perceived to be
affected financially by the published work, such as Government departments and agencies (e.g.,
National Disability Insurance Scheme), service providers, companies, business (including where self-
employed), or foundations supported by entities that could be perceived to have a financial stake in
the outcome.

Activities Name all entities with whom Specifications/comments

you have this relationship or (e.g., description of support,
indicate none (add rows as if payments were made to
needed) you or your institution)
Grants or contracts from any Project funding awarded to
entity (if not indicated in item Autism CRC Griffith University (CIA, 2022-
#1 above). 2022, $250,800) to support the
development of the National
guideline for supporting the
learning, participation, and
wellbeing of autistic children
and their families in Australia.
CliniKids, Telethon Kids Institute I hold a joint appointment
between Griffith University and
CliniKids, Telethon Kids Institute.
My substantive position is at
Griffith University, with salary
 Page 3 of 7

support from CliniKids, Telethon

Kids Institute (2022 – Current)
NHMRC/Medical Research Project funding awarded to
Future fund Griffith University (CIC, 2022-
2025, $579,747) to support a
project aimed at Enhancing
Quality of Life through an
early InTervention co-
developed with the autistic
communitY (E-QoL-ITY)
Autism CRC Project funding awarded to
Griffith University (CIA, 2020-
2020, $121,000) to support the
synthesis of evidence for
autism early intervention
approaches.
Queensland Government, Advance Queensland Industry
Australia Research Fellowship.
$150,000. Optimising
telepractice service delivery for
individuals on the autism
spectrum and their families.
(2021-2022)
Griffith University, Australia Research grant, $71,112.86,
funding for research aimed at
laying the foundations for the
development of a clinical
decision support system for
children on the autism
spectrum and their families.
Trembath, D., Wee-Cheung
Liew, A., Whitehouse, A., &
Upson, G. (2021-2021)
Commonwealth Department of Consultancy/commercial
Health research. Alcohol, Tobacco
and Other Drugs – Fetal
Alcohol Spectrum Disorder
(FASD) Diagnostic Services –
4-GO41V23. Dawe, S.,
Harnett, P., Trembath, D.
(2021-2024)
Griffith University, Australia Research grant. $228,000.
Funding to support the
development of the Child
Health, Learning, and
Disability Network at Griffith
University (CIA, 2019-2021)
Channel 7 Children’s Project grant. $100,000.
Foundation Grant Evaluation of Lego Robotics
program for autistic students
(AI, 2020-2022)
Menzies Health Institute Research grant, $50,000.
Queensland Promoting Knowledge
Translation in Teachers of
 Page 4 of 7

Students with Autism through

Peer-to-Peer Professional
Development: A Collaborative
Interdisciplinary Project.
Paynter, J., Adams, D.,
Simpson, K., Clark, M.,
Trembath, D., & Westerveld,
M. (2018-2019)
Australian Government Research grant, $232,961.
Department of Social Services, Supporting Best Practice in the
$232,961. Assessment and Treatment of
Minimally Verbal Children
with Autism. Trembath, D.,
Tucker, M., et al. (2017-2019)
Menzies Health Institute Research grant. $160,000.
Queensland From Cell to Community: New
Frontiers in Integrative
Restorative
Neurorehabilitation. Lloyd D,
Coppieters M, St John J,
McConnel H, Zeeman H, Grant
G, Thiel D, Trembath D,
Pizzolato C, Foster M, Buys N,
Lakhani A, Potter L, Canning
S. (2018-2019)
Department of Social Research Grant, $89,445.43.
Services Debunking Autism Treatment
Myths. Paynter, J., Keen, D.,
Trembath, D., Fordyce, K.,
Joosten, A., Hoppenbrouwers,
G., DeBlassio, A., Ecker, U., &
Imms, C. (2016-2019)
Education Queensland Horizon Research grant, $96,645.61.
Grants Scheme Listening to the evidence:
Using what works to improve
educational outcomes for
students with autism. Keen, D.,
Paynter, J., & Trembath, D.
(2017-2019)
Autism CRC Research grant, $661,989
Longitudinal Study of Students
with Autism (LASA), Roberts,
J., Trembath, D., Westerveld,
M., Keen, D., Simpson, K.
Paynter, J., Adams, D. &
Howlin, P. (2016-2021)
Autism CRC Research grant, $49,986. “How
was your day?” Home
conversations about their
school day in children with
Autism Spectrum Disorder.
Stirling, L., Dissanayake, C.,
Sofronoff, K., Westerveld, M.,
 Page 5 of 7

Trembath, D., & Ashburner, J.

(2015-2019)
Autism CRC Research grant, $25,000.
Relate: Technology Supporting
Communication in Children on
the Autism Spectrum.
Trembath, D., Iacono, T., Cox,
J., Johnson, R., Rose, V.
(2016-2019)
Royalties or licenses
Consulting fees Speech Pathology Australia Honorarium for role as Project
Officer responsible for leading
the revision of the Speech
Pathology Australia Position
Statement and Practice
Guideline for working with
individuals on the autism
spectrum (2020-2021, $7,500)
Humanity Health Group Griffith University consultancy
and commercial research
(CCR) to provide professional
development to Humanity
Health Group (2021, $2500).
Speech Pathology Australia Honorarium for preparation of
self-guided learning package
relating to Autism CRC
synthesis of evidence report
(2021, $1,400)
Speech Pathology Australia Honorarium for presentation of
professional development
event (webinar) relating to
Autism CRC synthesis of
evidence report (2021, $840)
Charles Sturt University (2022) Thesis examination
University of Sydney (2021) (approximately $500 on each
Deakin University (2021) occasion)
Macquarie University (2021)
Victoria University (2019)
Curtin University (2019)

Payment or honoraria for

lectures, presentations,
speakers’ bureaus, manuscript
writing or educational events
Payment for expert testimony
Support for attending meetings Australian Swim Schools Complementary associate
and/or travel Association membership to attend webinar
titled ‘Teaching children with
Autism’ for research
purposes. 2022.
Griffith University Registration support to attend
the Aspect Research Centre for
Autism Practice Conference.
2021.
 Page 6 of 7

Association for Applied Registration to enable access to

Behaviour Analysis Australia online platform to deliver
invited address (no exchange
of funds), 2021.
Patents planned, issued or
pending
Participation on a Data Safety National Health and Medical Committee fees for work as
Monitoring Board or Advisory Research Council member of the Grant
Board Management Solution Working
Group as per NHMRC
schedule.
Leadership or fiduciary role in Australasian Society for Executive Committee member
other board, society, committee Autism Research (unpaid)
or advocacy group, paid or AEIOU Member of Research Advisory
unpaid Committee (unpaid)
Augmentative and Alternative Associate Editor (unpaid)
Communication (journal)
Journal of Research in Autism Extended Editorial Board
Spectrum Disorders (journal) Member (unpaid)
Department of Social Services Member representing Speech
Pathology Australia on the
Expert Reference Group to
implement the National
Guideline for the Assessment
and Diagnosis of Autism
Spectrum Disorders in
Australia (unpaid)
Stock or stock options
Receipt of equipment,
materials, drugs, medical
writing, gifts or other services

3. Relevant other activities or relationships, including non-financial relationships (no time

limit)
Are there other relationships or activities that readers could be perceived to have influenced, or that
could give the appearance of potentially influencing, your involvement in the guideline? If so, please
specify.

Activity Specifications/comments (e.g., description of

the relationship/activity/organisations
involved)
Development, delivery, evaluation, and/or I led the adaptation of the ELSA-T language
distribution of any clinical tools, training sampling methodology for Australian children
manuals, resources, and/or technology that may as part of a research project. I have no financial
be relevant to assessment and diagnosis of interest in this regard.
autism
A personal relationship with another person
(e.g., spouse, family member) involved in the
development, delivery, evaluation, and/or
distribution of any clinical tools, training
manuals, resources, and/or. technology that may
be relevant to assessment and diagnosis of
autism
 Page 7 of 7

Development and/or delivery of professional Since 2004, I have contributed to the

preparation programs that may be relevant to the development and/or delivery of speech
guideline (e.g., allied health professional pathology professional preparation programs at
preparation programs that include training in the University of Sydney, La Trobe University,
assessment and diagnosis of autism) and Griffith University. I have also acted as an
external reviewer (accreditation) for the
Massey University speech pathology program
in New Zealand. From 2018-2020, I was
tasked with developing and acting as Program
Director for two programs in Applied
Behaviour Analysis (Graduate Certificate,
Masters) at Griffith University.
A personal relationship with another person
(e.g., spouse, family member) involved in the
development and/or delivery of professional
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
Personal and/or family interest in assessment I have family members who access services
and diagnosis, such as accessing clinical with funding from the National Disability
services that may be covered in the guideline Insurance Scheme.
Other (please make any further declarations that
may be relevant)

Declaration
If your answer is different from 'No' to any of the questions above, you may have a competing interest
which should be declared. These will be reviewed by the co-Chairs of the Guideline Development
Group. If the co-Chairs have answered other than ‘none’ to any of the questions above, these will be
reviewed by three members of the Guideline Development Group. In each case, appropriate processes
will be put in place to manage any conflicts arising.
 Page 1 of 4

Autism CRC Update: Assessment and Diagnosis Guideline

Disclosure of Interests

Date: 10/11/2022
First Name: Kandice
Surname: Varcin

Origin of Form
This form has been adapted (including direct replication of text where relevant) from:

• The International Committee of Medical Journal Editors (ICMJE) disclosure of interest form
(https://www.icmje.org/disclosure-of-interest/)
• The Cochrane Collaboration Disclosure of Potential Conflicts of Interest form
(https://community.cochrane.org/sites/default/files/uploads/EPPR/Cochrane-COI-disclosure-
form.pdf)
Instructions
The purpose of this form is to provide readers of your review with information about your other
interests that could influence how they receive and understand your work. We ask you to disclose all
relationships/activities/interests listed below that are related to your involvement in the update of the
Autism CRC National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia (herein referred to as the guideline). “Related” means any relation with for-profit or not-for-
profit third parties whose interests may be affected by the content of the guideline. Disclosure
represents a commitment to transparency and does not necessarily indicate a bias. Please think
broadly when disclosing all relationships/activities/interests that may be relevant to your involvement
in the guideline. If you are in doubt about whether to list a relationship/activity/interest, it is
preferable that you do so.
Each person will be asked to complete their own form and you are responsible for the accuracy and
completeness. In submitting this form, you certify that you have answered every question and have
not altered the wording of any of the questions on this form.
If new interests arise during the project, you are required to submit an updated form.
1. Support for your involvement in the update of the guideline.
This section asks for information about your role in the update of the guideline. The time frame for
this reporting is that of the work itself, from the point at which you became involved in the update. If
you worked on the original Guideline, you will have disclosed your interests related to that work
previously, and so please focus on your involvement in the update in this form.
The requested information is about resources that you received, either directly or indirectly (via your
institution), to enable you to complete the work. Writing "None" means that you did the work without
receiving any financial support from any third party -- that is, the work was supported by funds from
the same institution that pays your salary and that institution did not receive third-party funds with
which to pay you. If you or your institution received funds from a third party to support the work,
such as a government granting agency, charitable foundation or commercial sponsor, then provide the
details. For example, if you will receive an honorarium from Autism CRC in relation to your
involvement, you would name Autism CRC and then indicate the amount of funds you will receive.
The honorarium for members of the GDG who will be accepting an honorarium is $2,000 (AUD).
 Page 2 of 4

Did you or your institution at any time receive payment or services from a third party for any aspect
of your involvement in the development of the guideline?
Please add more rows if necessary.

Support Name all entities that provided Description of support (e.g., amount
support (or indicate none) of funding, time in lieu)
Grant Autism CRC Project funding awarded to Griffith
University ($252,000) for a Guideline
project. Dr Varcin did not receive any
salary or other financial support for this
project. Dr Varcin’s contribution was
in-kind.
Consulting fee or None None
honorarium
Support for travel to None None
meetings for the
guideline or other
purposes
Other None None

2. Relevant financial activities outside the guideline (2019-2023)

This section asks about your financial relationships with entities in the field of autism that could be
perceived to influence, or that give the appearance of potentially influencing, your involvement in the
guideline. These relationships may include clinical service providers; companies that sell products
that autistic people, their families, or service providers may purchase; and organisations that represent
and/or advocate for autistic people, their families, and/or service providers. You should disclose
interactions with ANY entity that could be considered broadly relevant to the work. Report all sources
of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36
months prior to commencing work on the update of the guideline, and up until the point it will be
submitted to Autism CRC (i.e., 2020-2023). This should include all monies from sources with
relevance to the guideline, not just monies from Autism CRC which sponsored the research. Please
note that your interactions with Autism CRC that are outside the guideline should also be listed here.
If there is any question, please disclose the relationship. For grants you have received for work
outside the guideline, you should disclose support only from entities that could be perceived to be
affected financially by the published work, such as Government departments and agencies (e.g.,
National Disability Insurance Scheme), service providers, companies, business (including where self-
employed), or foundations supported by entities that could be perceived to have a financial stake in
the outcome.

Activities Name all entities with whom Specifications/comments

you have this relationship or (e.g., description of support,
indicate none (add rows as if payments were made to
needed) you or your institution)
Grants or contracts from any Autism CRC & Griffith Autism CRC funding provided
entity (if not indicated in item University to Griffith University which
#1 above). served as salary support for my
Research Fellow position on an
evidence synthesis project
commissioned by NDIS from
June 2020-December 2020.
 Page 3 of 4

Autism CRC & Griffith Autism CRC funding was

University provided to Griffith University
which served as salary support
for my Research Fellow
position on the development of
the National Practice Guideline
for supporting autistic children
and their families (2021-2022).
Amount: $65,531
Royalties or licenses None
Consulting fees None
Payment or honoraria for La Trobe University Payment made to a research
lectures, presentations, account at CliniKids, Telethon
speakers’ bureaus, manuscript Kids Institute for the provision
writing or educational events of ADOS-2 training services.
Payment for expert testimony None
Support for attending meetings None
and/or travel
Patents planned, issued or None
pending
Participation on a Data Safety None
Monitoring Board or Advisory
Board
Leadership or fiduciary role in None
other board, society, committee
or advocacy group, paid or
unpaid
Stock or stock options None
Receipt of equipment, None
materials, drugs, medical
writing, gifts or other services

3. Relevant other activities or relationships, including non-financial relationships (no time

limit)
Are there other relationships or activities that readers could be perceived to have influenced, or that
could give the appearance of potentially influencing, your involvement in the guideline? If so, please
specify.

Activity Specifications/comments (e.g., description of

the relationship/activity/organisations
involved)
Development, delivery, evaluation, and/or I am a qualified trainer on the Autism
distribution of any clinical tools, training Diagnostic Observation Schedule-2 and I have
manuals, resources, and/or technology that may delivered numerous courses (in-kind and for-
be relevant to assessment and diagnosis of fee) for researchers and practitioners in
autism Australia.

A personal relationship with another person None

(e.g., spouse, family member) involved in the
development, delivery, evaluation, and/or
distribution of any clinical tools, training
manuals, resources, and/or technology that may
 Page 4 of 4

be relevant to assessment and diagnosis of

autism
Development and/or delivery of professional None
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
A personal relationship with another person None
(e.g., spouse, family member) involved in the
development and/or delivery of professional
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
Personal and/or family interest in assessment None
and diagnosis, such as accessing clinical
services that may be covered in the guideline
Other (please make any further declarations that I currently hold a conjoint position between
may be relevant) Griffith University and CliniKids, Telethon
Kids Institute. I am supervised in this position
by A/Prof David Trembath and Prof Andrew
Whitehouse - both of whom have relationships
with Autism CRC.

Declaration
If your answer is different from 'No' to any of the questions above, you may have a competing interest
which should be declared. These will be reviewed by the co-Chairs of the Guideline Development
Group. If the co-Chairs have answered other than ‘none’ to any of the questions above, these will be
reviewed by three members of the Guideline Development Group. In each case, appropriate processes
will be put in place to manage any conflicts arising.
 Page 1 of 5

Autism CRC Update: Assessment and Diagnosis Guideline

Disclosure of Interests

Date: 11.11.22
First Name: Hannah
Surname: Waddington

Origin of Form
This form has been adapted (including direct replication of text where relevant) from:

• The International Committee of Medical Journal Editors (ICMJE) disclosure of interest form
(https://www.icmje.org/disclosure-of-interest/)
• The Cochrane Collaboration Disclosure of Potential Conflicts of Interest form
(https://community.cochrane.org/sites/default/files/uploads/EPPR/Cochrane-COI-disclosure-
form.pdf)
Instructions
The purpose of this form is to provide readers of your review with information about your other
interests that could influence how they receive and understand your work. We ask you to disclose all
relationships/activities/interests listed below that are related to your involvement in the update of the
Autism CRC National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia (herein referred to as the guideline). “Related” means any relation with for-profit or not-for-
profit third parties whose interests may be affected by the content of the guideline. Disclosure
represents a commitment to transparency and does not necessarily indicate a bias. Please think
broadly when disclosing all relationships/activities/interests that may be relevant to your involvement
in the guideline. If you are in doubt about whether to list a relationship/activity/interest, it is
preferable that you do so.
Each person will be asked to complete their own form and you are responsible for the accuracy and
completeness. In submitting this form, you certify that you have answered every question and have
not altered the wording of any of the questions on this form.
If new interests arise during the project, you are required to submit an updated form.
1. Support for your involvement in the update of the guideline.
This section asks for information about your role in the update of the guideline. The time frame for
this reporting is that of the work itself, from the point at which you became involved in the update. If
you worked on the original Guideline, you will have disclosed your interests related to that work
previously, and so please focus on your involvement in the update in this form.
The requested information is about resources that you received, either directly or indirectly (via your
institution), to enable you to complete the work. Writing "None" means that you did the work without
receiving any financial support from any third party -- that is, the work was supported by funds from
the same institution that pays your salary and that institution did not receive third-party funds with
which to pay you. If you or your institution received funds from a third party to support the work,
such as a government granting agency, charitable foundation or commercial sponsor, then provide the
details. For example, if you will receive an honorarium from Autism CRC in relation to your
involvement, you would name Autism CRC and then indicate the amount of funds you will receive.
The honorarium for members of the GDG who will be accepting an honorarium is $2,000 (AUD).
 Page 2 of 5

Did you or your institution at any time receive payment or services from a third party for any aspect
of your involvement in the development of the guideline?
Please add more rows if necessary.

Support Name all entities that provided Description of support (e.g., amount
support (or indicate none) of funding, time in lieu)
Grant Autism CRC Autism CRC research funding provided
to Victoria University of Wellington as
salary support for Research Fellow
position on the development of the
update of the assessment and diagnosis
guideline.
Amount: AUD$52,000
Consulting fee or
honorarium
Support for travel to
meetings for the
guideline or other
purposes
Other

2. Relevant financial activities outside the guideline (2019-2022)

This section asks about your financial relationships with entities in the field of autism that could be
perceived to influence, or that give the appearance of potentially influencing, your involvement in the
the guideline. These relationships may include clinical service providers; companies that sell products
that autistic people, their families, or service providers may purchase; and organisations that represent
and/or advocate for autistic people, their families, and/or service providers. You should disclose
interactions with ANY entity that could be considered broadly relevant to the work. Report all sources
of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36
months prior to commencing work on the update of the guideline, and up until the point it will be
submitted to Autism CRC (i.e., 2020-2023). This should include all monies from sources with
relevance to the guideline, not just monies from Autism CRC which sponsored the research. Please
note that your interactions with Autism CRC that are outside the guideline should also be listed here.
If there is any question, please disclose the relationship. For grants you have received for work
outside the guideline, you should disclose support only from entities that could be perceived to be
affected financially by the published work, such as Government departments and agencies (e.g.,
National Disability Insurance Scheme), service providers, companies, business (including where self-
employed), or foundations supported by entities that could be perceived to have a financial stake in
the outcome.

Activities Name all entities with whom Specifications/comments

you have this relationship or (e.g., description of support,
indicate none (add rows as if payments were made to
needed) you or your institution)
Grants or contracts from any Royal Society of New Zealand, Transforming the clinical pathway
entity (if not indicated in item Discovery Fellowship for young autistic children in
#1 above). Aotearoa.
(P.I., 2023 – 2027, NZD$800,000)
Waddington H.
Health Research Council of Randomised controlled trial
New Zealand examining low intensity
therapy and parent coaching
 Page 3 of 5

for young autistic children

(PA, 2020-2023, NZD$300k).
H. Waddington, Whitehouse,
A. J. O.
Cure Kids, New Zealand Randomised controlled trial
comparing naturalistic
developmental behavioural
intervention, acceptance and
commitment therapy, or a
combination of these
approaches on outcomes for
young autistic children and
their families (AI, 2022-2023,
NZD$500k). McLay, L.,
Emerson, L., Waddington, H.,
Macfarlane, S.
Victoria University of Funding to explore the effect
Wellington of teaching non-autistic older
siblings to interact with their
autistic younger sibling
through play (PI, 2020-2022,
NZD$29k). H. Waddington.
IHC Foundation, New Zealand Funding to develop an autism
diagnostic clinic together with
Autism New Zealand (AI,
2021-2022, NZD$34k). L. van
der Meer, D. Dougan, H.
Waddington
IHC Foundation, New Zealand Funding for further training in
the early start Denver model
(AI, 2020-2021, NZD$78k). L.
van der Meer, D. Dougan, H.
Waddington
Auckland University of Funding to train Auckland
Technology, New Zealand Well Child Tamariki Ora
Nurses to identify early signs
of autism (AI, 2019-2020,
20k). D. Shepherd, L. van der
Meer, H. Waddington.
IHC Foundation Funding for delivery of
community therapy based on
the early start Denver model
(AI, 122k, 2019-2020). L. van
der Meer, D. Dougan, H.
Waddington
Victoria University of Research establishment grant-
Wellington training Wellington Well Child
Tamariki Ora nurses to identify
early signs of autism (PI, 10k,
2018). H. Waddington.
Royalties or licenses None
Consulting fees None
Payment or honoraria for None
lectures, presentations,
 Page 4 of 5

speakers’ bureaus, manuscript

writing or educational events
Payment for expert testimony None
Support for attending meetings Autism CRC Support to attend the Autism
and/or travel CRC participant day in
Brisbane, 2022 (NZD$1332)
Victoria University of Wellington Support to virtually attend the
International Society for
Autism Research Conference,
2021 (USD$375)
Victoria University of Wellington Support to attend the Australasian
Society for Autism Research
Conference, 2022 (NZD$1,200)s
Patents planned, issued or No
pending
Participation on a Data Safety No
Monitoring Board or Advisory
Board
Leadership or fiduciary role in Autism New Zealand Member of research advisory
other board, society, committee group (unpaid)
or advocacy group, paid or Autism Intervention Trust Victoria University of
unpaid Wellington Representative
(unpaid)
University of Canterbury Member of New Zealand
Research Priorities advisory
group (unpaid)
Victoria University of Clinic Lead, Victoria
Wellington University of Wellington
Autism Clinic (unpaid)
Advances in Extended editorial board
Neurodevelopmental Disorders member (unpaid)
(journal)
Stock or stock options None
Receipt of equipment, None
materials, drugs, medical
writing, gifts or other services

3. Relevant other activities or relationships, including non-financial relationships (no time

limit)
Are there other relationships or activities that readers could be perceived to have influenced, or that
could give the appearance of potentially influencing, your involvement in the guideline? If so, please
specify.

Activity Specifications/comments (e.g., description of

the relationship/activity/organisations
involved)
Development, delivery, evaluation, and/or I am trained in the SACS-R and have helped to
distribution of any clinical tools, training coordinate SACS-R training in New Zealand.
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
A personal relationship with another person None
(e.g., spouse, family member) involved in the
 Page 5 of 5

development, delivery, evaluation, and/or

distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
Development and/or delivery of professional I lecture about early identification and
preparation programs that may be relevant to the diagnosis in several programmes at Victoria
guideline (e.g., allied health professional University of Wellington.
preparation programs that include training in
assessment and diagnosis of autism)
A personal relationship with another person No.
(e.g., spouse, family member) involved in the
development and/or delivery of professional
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
Personal and/or family interest in assessment No.
and diagnosis, such as accessing clinical
services that may be covered in the guideline
Other (please make any further declarations that No.
may be relevant)

Declaration
If your answer is different from 'No' to any of the questions above, you may have a competing interest
which should be declared. These will be reviewed by the co-Chairs of the Guideline Development
Group. If the co-Chairs have answered other than ‘none’ to any of the questions above, these will be
reviewed by three members of the Guideline Development Group. In each case, appropriate processes
will be put in place to manage any conflicts arising.
 Page 1 of 6

Autism CRC Update: Assessment and Diagnosis Guideline

Disclosure of Interests

Date: 31st January 2023.

First Name: Andrew
Surname: Whitehouse

Origin of Form
This form has been adapted (including direct replication of text where relevant) from:

• The International Committee of Medical Journal Editors (ICMJE) disclosure of interest form
(https://www.icmje.org/disclosure-of-interest/)
• The Cochrane Collaboration Disclosure of Potential Conflicts of Interest form
(https://community.cochrane.org/sites/default/files/uploads/EPPR/Cochrane-COI-disclosure-
form.pdf)
Instructions
The purpose of this form is to provide readers of your review with information about your other
interests that could influence how they receive and understand your work. We ask you to disclose all
relationships/activities/interests listed below that are related to your involvement in the update of the
Autism CRC National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia (herein referred to as the guideline). “Related” means any relation with for-profit or not-for-
profit third parties whose interests may be affected by the content of the guideline. Disclosure
represents a commitment to transparency and does not necessarily indicate a bias. Please think
broadly when disclosing all relationships/activities/interests that may be relevant to your involvement
in the guideline. If you are in doubt about whether to list a relationship/activity/interest, it is
preferable that you do so.
Each person will be asked to complete their own form and you are responsible for the accuracy and
completeness. In submitting this form, you certify that you have answered every question and have
not altered the wording of any of the questions on this form.
If new interests arise during the project, you are required to submit an updated form.
1. Support for your involvement in the update of the guideline.
This section asks for information about your role in the update of the guideline. The time frame for
this reporting is that of the work itself, from the point at which you became involved in the update. If
you worked on the original Guideline, you will have disclosed your interests related to that work
previously, and so please focus on your involvement in the update in this form.
The requested information is about resources that you received, either directly or indirectly (via your
institution), to enable you to complete the work. Writing "None" means that you did the work without
receiving any financial support from any third party -- that is, the work was supported by funds from
the same institution that pays your salary and that institution did not receive third-party funds with
which to pay you. If you or your institution received funds from a third party to support the work,
such as a government granting agency, charitable foundation or commercial sponsor, then provide the
details. For example, if you will receive an honorarium from Autism CRC in relation to your
involvement, you would name Autism CRC and then indicate the amount of funds you will receive.
The honorarium for members of the GDG who will be accepting an honorarium is $2,000 (AUD).
 Page 2 of 6

Did you or your institution at any time receive payment or services from a third party for any aspect
of your involvement in the development of the guideline?
Please add more rows if necessary.

Support Name all entities that provided Description of support (e.g., amount
support (or indicate none) of funding, time in lieu)
Grant Yes The Telethon Kids Institute (which
supports salary for Andrew
Whitehouse) received funding for a
researcher to assist the coding of
responses received during the
community consultation for this project.
Consulting fee or None
honorarium
Support for travel to None
meetings for the
guideline or other
purposes
Other None

2. Relevant financial activities outside the guideline (2019-2022)

This section asks about your financial relationships with entities in the field of autism that could be
perceived to influence, or that give the appearance of potentially influencing, your involvement in the
the guideline. These relationships may include clinical service providers; companies that sell products
that autistic people, their families, or service providers may purchase; and organisations that represent
and/or advocate for autistic people, their families, and/or service providers. You should disclose
interactions with ANY entity that could be considered broadly relevant to the work. Report all sources
of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36
months prior to commencing work on the update of the guideline, and up until the point it will be
submitted to Autism CRC (i.e., 2020-2023). This should include all monies from sources with
relevance to the guideline, not just monies from Autism CRC which sponsored the research. Please
note that your interactions with Autism CRC that are outside the guideline should also be listed here.
If there is any question, please disclose the relationship. For grants you have received for work
outside the guideline, you should disclose support only from entities that could be perceived to be
affected financially by the published work, such as Government departments and agencies (e.g.,
National Disability Insurance Scheme), service providers, companies, business (including where self-
employed), or foundations supported by entities that could be perceived to have a financial stake in
the outcome.

Activities Name all entities with Specifications/comments (e.g.,

whom you have this description of support, if payments
relationship or indicate were made to you or your institution)
none (add rows as
needed)
Grants or contracts from Since 2020, Andrew Research funding received that is
any entity (if not indicated Whitehouse has received specific to autism intervention:
in item #1 above). research funding from the
following organisations: 1. NHMRC Investigator Grant (CIA
National Health and Whitehouse, APP1173896). Improving
Medical Research Council clinical outcomes for children with
(NHMRC), Autism CRC, autism spectrum disorder: A research
 Page 3 of 6

the Waterloo Foundation, program spanning basic, clinical and

the National Disability implementation science.
Insurance Agency, Griffith 2020-2024.
University, the New
Zealand Health Research 2. Telethon-Perth Children’s Hospital
Council, the Western Research Fund (CIB Whitehouse). A
Australian State randomised-controlled trial of group-
Government (Telethon- based very early intervention for infants
Perth Children’s Hospital with autism risk behaviours 2018-2020.
Research Fund), and the or developmental delay
Angela Wright Bennett 2016-2018.
Foundation.
3. Angela Wright Bennett Foundation
(CIA Whitehouse) Funding provided as
part of Whitehouse’s Chair position,
which has been used to trial a new
intervention for newborns with a family
history of autism. 2019-2024.

4. Commonwealth Department of Social

Services, via Autism CRC (CIA
Whitehouse). Implementation of the
National guideline for the Assessment
and Diagnosis of Autism in Australia.
2021-2022.

5. Health Group Seed Grant Scheme,

Griffith University (CIB Whitehouse)
Laying the foundation for optimal
clinical decision-making for children
with autism spectrum. 2020-2021.

6. New Zealand Health Research

Council (CIB Whitehouse, 20/581)
Low-intensity therapy and parent
coaching for young children with ASD:
An RCT. 2020-2023.

7. National Disability Insurance Agency,

via Autism CRC (CIA Whitehouse
1.077RC). Synthesis of evidence for
early autism intervention approaches
2020.

8. Waterloo Foundation (CIB

Whitehouse)
Exercise intervention in developmental
coordination disorder. 2020-2022.

Royalties or licenses Pearson Publishing, UWA Andrew Whitehouse is the co-author of

Publishing the Communication Checklist - Adult
(2009) and Communication Checklist -
 Page 4 of 6

Self Report (2009) and in receipt of

small royalties based on sales
(<$5,000p.a).

Andrew Whitehouse is the author of a

book with UWA Publishing (Will
Mozart make my Baby Smart) and in
receipt of small royalties based on sales
(<$5,000p.a).
Consulting fees None Andrew Whitehouse is the Research
Strategy Director for the Autism CRC.
This is an honorary position and is not
supported by any financial
remuneration.
Payment or honoraria for None
lectures, presentations,
speakers’ bureaus,
manuscript writing or
educational events
Payment for expert None
testimony
Support for attending Autism CRC Andrew Whitehouse received support
meetings and/or travel for travel and accommodation to attend
the Autism CRC Participant Day in
April 2022.
Patents planned, issued or None
pending
Participation on a Data None
Safety Monitoring Board
or Advisory Board
Leadership or fiduciary Autism Awareness 1. Non-Executive Director of Autism
role in other board, Australia, Kids are Kids, Awareness Australia
society, committee or Ocean Heroes, (https://www.autismawareness.com.au/).
advocacy group, paid or Australasian Society for Role is unpaid.
unpaid Autism Research,
Furthering Autistic 2. Non-Executive Director of Ocean
Children's Education And Heroes: https://oceanheroes.com.au/ .
Schooling Role is unpaid.

3. President, Australasian Society for

Autism Research from 2021-2022
(https://asfar.org.au/ ). Role is unpaid.

4. Director of Furthering Autistic

Children’s Education and Schooling Inc.
Role is unpaid.

5. Patron of ‘Kids are Kids’

(www.kidsarekids.org.au/ ) which is a
service provider for children with
developmental difficulties, including
autism. Role is unpaid.
 Page 5 of 6

6. Invitee to the Expert Reference Group

to implement the National Guideline for
the Assessment and Diagnosis of
Autism Spectrum Disorders in
Australia. Role is unpaid.
Stock or stock options None
Receipt of equipment, None
materials, drugs, medical
writing, gifts or other
services

3. Relevant other activities or relationships, including non-financial relationships (no time

limit)
Are there other relationships or activities that readers could be perceived to have influenced, or that
could give the appearance of potentially influencing, your involvement in the guideline? If so, please
specify.

Activity Specifications/comments (e.g., description of

the relationship/activity/organisations
involved)
Development, delivery, evaluation, and/or Chair of the development of the original
distribution of any clinical tools, training version of the “National guideline for the
manuals, resources, and/or technology that may Assessment and Diagnosis of autism in
be relevant to assessment and diagnosis of Australia”.
autism Co-owner of Intellectual Property for the
iBASIS intervention.
Director of CliniKids, an arm of the Telethon
Kids Institute that provides clinical services to
children with neurodevelopmental conditions.
A personal relationship with another person None
(e.g., spouse, family member) involved in the
development, delivery, evaluation, and/or
distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
Development and/or delivery of professional None
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
A personal relationship with another person None
(e.g., spouse, family member) involved in the
development and/or delivery of professional
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
Personal and/or family interest in assessment Andrew Whitehouse has first degree family
and diagnosis, such as accessing clinical member who is a participant within the
services that may be covered in the guideline National Disability Insurance Scheme.
Other (please make any further declarations that None
may be relevant)
 Page 6 of 6

Declaration
If your answer is different from 'No' to any of the questions above, you may have a competing interest
which should be declared. These will be reviewed by the co-Chairs of the Guideline Development
Group. If the co-Chairs have answered other than ‘none’ to any of the questions above, these will be
reviewed by three members of the Guideline Development Group. In each case, appropriate processes
will be put in place to manage any conflicts arising.
 Page 1 of 4

Autism CRC Update: Assessment and Diagnosis Guideline

Disclosure of Interests

Date: 11/11/2022
First Name: Rachelle
Surname: Wicks

Origin of Form
This form has been adapted (including direct replication of text where relevant) from:

• The International Committee of Medical Journal Editors (ICMJE) disclosure of interest form
(https://www.icmje.org/disclosure-of-interest/)
• The Cochrane Collaboration Disclosure of Potential Conflicts of Interest form
(https://community.cochrane.org/sites/default/files/uploads/EPPR/Cochrane-COI-disclosure-
form.pdf)
Instructions
The purpose of this form is to provide readers of your review with information about your other
interests that could influence how they receive and understand your work. We ask you to disclose all
relationships/activities/interests listed below that are related to your involvement in the update of the
Autism CRC National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia (herein referred to as the guideline). “Related” means any relation with for-profit or not-for-
profit third parties whose interests may be affected by the content of the guideline. Disclosure
represents a commitment to transparency and does not necessarily indicate a bias. Please think
broadly when disclosing all relationships/activities/interests that may be relevant to your involvement
in the guideline. If you are in doubt about whether to list a relationship/activity/interest, it is
preferable that you do so.
Each person will be asked to complete their own form and you are responsible for the accuracy and
completeness. In submitting this form, you certify that you have answered every question and have
not altered the wording of any of the questions on this form.
If new interests arise during the project, you are required to submit an updated form.
1. Support for your involvement in the update of the guideline.
This section asks for information about your role in the update of the guideline. The time frame for
this reporting is that of the work itself, from the point at which you became involved in the update. If
you worked on the original Guideline, you will have disclosed your interests related to that work
previously, and so please focus on your involvement in the update in this form.
The requested information is about resources that you received, either directly or indirectly (via your
institution), to enable you to complete the work. Writing "None" means that you did the work without
receiving any financial support from any third party -- that is, the work was supported by funds from
the same institution that pays your salary and that institution did not receive third-party funds with
which to pay you. If you or your institution received funds from a third party to support the work,
such as a government granting agency, charitable foundation or commercial sponsor, then provide the
details. For example, if you will receive an honorarium from Autism CRC in relation to your
involvement, you would name Autism CRC and then indicate the amount of funds you will receive.
The honorarium for members of the GDG who will be accepting an honorarium is $2,000 (AUD).
 Page 2 of 4

Did you or your institution at any time receive payment or services from a third party for any aspect
of your involvement in the development of the guideline?
Please add more rows if necessary.

Support Name all entities that provided Description of support (e.g., amount
support (or indicate none) of funding, time in lieu)
Grant None None
Consulting fee or None None
honorarium
Support for travel to None None
meetings for the
guideline or other
purposes
Other Griffith University Salary

2. Relevant financial activities outside the guideline (2019-2022)

This section asks about your financial relationships with entities in the field of autism that could be
perceived to influence, or that give the appearance of potentially influencing, your involvement in the
the guideline. These relationships may include clinical service providers; companies that sell products
that autistic people, their families, or service providers may purchase; and organisations that represent
and/or advocate for autistic people, their families, and/or service providers. You should disclose
interactions with ANY entity that could be considered broadly relevant to the work. Report all sources
of revenue paid (or promised to be paid) directly to you or your institution on your behalf over the 36
months prior to commencing work on the update of the guideline, and up until the point it will be
submitted to Autism CRC (i.e., 2020-2023). This should include all monies from sources with
relevance to the guideline, not just monies from Autism CRC which sponsored the research. Please
note that your interactions with Autism CRC that are outside the guideline should also be listed here.
If there is any question, please disclose the relationship. For grants you have received for work
outside the guideline, you should disclose support only from entities that could be perceived to be
affected financially by the published work, such as Government departments and agencies (e.g.,
National Disability Insurance Scheme), service providers, companies, business (including where self-
employed), or foundations supported by entities that could be perceived to have a financial stake in
the outcome.

Activities Name all entities with whom Specifications/comments

you have this relationship or (e.g., description of support,
indicate none (add rows as if payments were made to
needed) you or your institution)
Grants or contracts from any None None
entity (if not indicated in item
#1 above).
Royalties or licenses None None
Consulting fees None None
Payment or honoraria for None None
lectures, presentations,
speakers’ bureaus, manuscript
writing or educational events
Payment for expert testimony None None
Support for attending meetings Autism QLD – Advisory Receive $50 for attending
and/or travel Committee member quarterly meetings.
 Page 3 of 4

Patents planned, issued or None None

pending
Participation on a Data Safety None None
Monitoring Board or Advisory
Board
Leadership or fiduciary role in None None
other board, society, committee
or advocacy group, paid or
unpaid
Grants or contracts from any None None
entity (if not indicated in item
#1 above).
Royalties or licenses None None
Consulting fees None None
Payment or honoraria for None None
lectures, presentations,
speakers bureaus, manuscript
writing or educational events
Payment for expert testimony None None
Support for attending meetings None None
and/or travel
Patents planned, issued or None None
pending
Participation on a Data Safety None None
Monitoring Board or Advisory
Board
Leadership or fiduciary role in None None
other board, society, committee
or advocacy group, paid or
unpaid
Stock or stock options None None
Receipt of equipment, None None
materials, drugs, medical
writing, gifts or other services

3. Relevant other activities or relationships, including non-financial relationships (no time

limit)
Are there other relationships or activities that readers could be perceived to have influenced, or that
could give the appearance of potentially influencing, your involvement in the guideline? If so, please
specify.

Activity Specifications/comments (e.g., description of

the relationship/activity/organisations
involved)
Development, delivery, evaluation, and/or None
distribution of any clinical tools, training
manuals, resources, and/or technology that may
be relevant to assessment and diagnosis of
autism
A personal relationship with another person None
(e.g., spouse, family member) involved in the
development, delivery, evaluation, and/or
distribution of any clinical tools, training
 Page 4 of 4

manuals, resources, and/or technology that may

be relevant to assessment and diagnosis of
autism
Development and/or delivery of professional None
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
A personal relationship with another person None
(e.g., spouse, family member) involved in the
development and/or delivery of professional
preparation programs that may be relevant to the
guideline (e.g., allied health professional
preparation programs that include training in
assessment and diagnosis of autism)
Personal and/or family interest in assessment None
and diagnosis, such as accessing clinical
services that may be covered in the guideline
Other (please make any further declarations that None
may be relevant)

Declaration
If your answer is different from 'No' to any of the questions above, you may have a competing interest
which should be declared. These will be reviewed by the co-Chairs of the Guideline Development
Group. If the co-Chairs have answered other than ‘none’ to any of the questions above, these will be
reviewed by three members of the Guideline Development Group. In each case, appropriate processes
will be put in place to manage any conflicts arising.
 Update of the National Guideline for the Assessment and Diagnosis of Autism in
Australia

Appendix 2.3 Reference Group – Terms of Reference

 Update: National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia

Terms of Reference for the Reference Group

Date distributed: 19/10/22

Background
In 2018, Autism CRC published the National Guideline for the Assessment and Diagnosis of Autism
Spectrum Disorders in Australia. This was the first national practice guideline in Australia, and has
underpinned fundamental changes in the way autism is understood, assessed, and diagnosed in the
Australian community. The Guideline was endorsed by the National Health and Medical Research
Council and a range of relevant professional associations. Autism CRC has also supported the
implementation of the Guideline through a range of implementation activities, along with the efforts
of an Expert Reference Group commissioned by the Australian Government Department of Social
Services to inform its implementation and evaluation. Given that nearly 5 years has passed since
publication, as per NHMRC requirements, it is important that the Guideline be updated. This process
will occur in a manner consistent with the NHMRC Standards for Guideline Development.

In June 2022, Autism CRC made a call for applications for investment to support the update of the
ADG. A group of five organisations – Griffith University, Telethon Kids Institute, Autism New Zealand,
Victoria University of Wellington, and University of Queensland – was successful in an application to
undertake this work, which will occur between 01/09/22 and 30/06/23.

The update of the Guideline will be led by a Guideline Development Group (GDG), which will bring
together members with diverse lived and professional expertise relevant to the Guideline, in keeping
with NHMRC Guidelines for Guidelines Process.

A Reference Group, made up of representatives of key stakeholder organisations from the autistic
and autism communities, will also support the update of the Guideline. The Reference Group will
provide key stakeholder organisations with a direct way to engage in the update process, including
(a) sharing the organisations’ views, (b) ensuring the organisations’ members are aware of
opportunities to participate in community consultation activities, and (c) providing feedback (as
organisations and/or feedback from individual members) on the draft updated Guideline when it is
ready for Public Consultation. The Reference Group will provide advice and support in relation to
these matters, but will not have any direct input into the revision process (e.g., revising specific
Recommendations).

Purpose
Autism CRC has asked Dr Emma Goodall and A/Prof David Trembath to form a GDG that will be
responsible for leading the update of the National Guideline for the Assessment and Diagnosis of
Autism Spectrum Disorders in Australia. The GDG will exist for the duration of the project.

Anticipated timeline for the project

The project commenced on 01/09/22 and will be completed on 30/06/23. The initial phase of the
project involves establishing the Guideline Development Group and Reference Group. The
involvement of organisations (and their representatives) in the Reference Group will commence on
the date of signing and returning (via email) this Terms of Reference and conclude on 30/06/23.

Membership of the Reference Group

Stakeholder organisations represented in the Reference Group will be determined by the co-chairs of
the project (Dr Emma Goodall and A/Prof David Trembath), informed by the ‘Guideline for Guidelines’
recommendations provided by the National health and Medical Research Council. Stakeholders will
be asked to nominate one individual to represent their organisation on the Reference. A proxy may
attend a meeting if the nominated individual is unable to attend. The Chair must be informed of the
substitution at least one working day prior to the scheduled nominated meeting.

Appointment of Meeting Chair

Dr Emma Goodall and/or A/Prof David Trembath will Chair the Reference Group meetings.

Responsibilities of the Reference Group Members

The responsibilities of the members are as follows:
• Complete a written Declaration of Interest form at the commencement of involvement, and
update the Co-Chairs of any changes during the term of the Reference Group.
• Share the views of the organisations and members they represent, on issues that are
relevant to the update of the Guideline.
• Help to ensure their organisation’s members are aware of opportunities to participate in
community consultation activities, such as through publicising opportunities to members.
• Provide feedback on the draft updated Guideline.

Meetings
The Reference Group will meet on three occasions. It is anticipated that these meetings will occur in
November 2022, March 2023, and June 2023. Notifications of these meetings will be distributed to
members upon return of a signed copy of these Terms of Reference. A quorum for meetings will be a
majority of the Members present via videoconference, including one of the co-Chairs.

Other correspondence
The work of the Reference Group will occur primarily in the scheduled meetings. Reference Group
members may be invited by the Co-Chairs to offer feedback on documents or issues arising between
meetings. This correspondence may occur via phone or online. Any additional activities (e.g., providing
feedback on documents) will be voluntary, as will any communication outside of meetings (e.g., Co-
Chair inviting a phone call to follow up on an issue raised in a scheduled meeting when time has not
allowed for complete discussion of the issue).

Code of conduct for the Project Team

The Reference Group members agree to the following:
• Conflicts of interest will be declared at commencement of their involvement, and be
updated as any new potential conflicts emerge.

• All communication between Reference Group members will be conducted in a respectful,

constructive, and cooperative way, and avoiding self-interest.

• All discussions within the Reference Group will remain confidential to that group until the
conclusion of the project, unless permission to discuss meeting content is provided by the
Co-Chairs.

Reporting
The Reference Group reports to the Autism CRC Ltd Board.

By signing below, I indicate that I agree to these Terms of reference.

Name:
Position:
Organisation:
Signature:
 Update of the National Guideline for the Assessment and Diagnosis of Autism in
Australia

Appendix 4.1 Database search strategy

CINAHL

Ab((Autis* OR ASD* OR Asperger* OR “pervasive developmental disorder*” OR PDD*

OR “pervasive child development disorder*” OR “pervasive childhood developmental
disorder*” OR PCDD* OR “disintegrative disorder*”) AND (diagnos*) AND (“systematic
review*” OR “systematic literature review*” OR “evidence synthes*” OR “meta-analy*” OR
“meta-regress*”)) AND Ti((Autis* OR ASD* OR Asperger* OR “pervasive developmental
disorder*” OR PDD* OR “pervasive child development disorder*” OR “pervasive childhood
developmental disorder*” OR PCDD* OR “disintegrative disorder*”) AND (diagnos*) AND
(“systematic review*” OR “systematic literature review*” OR “evidence synthes*” OR
“meta-analy*” OR “meta-regress*”))
Limit to: Published Date 20170101; English language

Cochrane

(Autis* OR ASD* OR Asperger* OR “pervasive developmental disorder*” OR PDD* OR

“pervasive child development disorder*” OR “pervasive childhood developmental disorder*”
OR PCDD* OR “disintegrative disorder*”) in Title Abstract Keyword AND (diagnos*) in
Title Abstract Keyword AND (“systematic review*” OR “systematic literature review*” OR
“evidence synthes*” OR “meta-analy*” OR “meta-regress*”) in Title Abstract Keyword-
with Cochrane Library Publication Date from Jan 2017 to Present.

Education Source

TI ((Autis* OR ASD* OR Asperger* OR “pervasive developmental disorder*” OR PDD*

OR “pervasive child development disorder*” OR “pervasive childhood developmental
disorder*” OR PCDD* OR “disintegrative disorder*”) AND (diagnos*) AND (“systematic
review*” OR “systematic literature review*” OR “evidence synthes*” OR “meta-analy*” OR
“meta-regress*”) ) AND AB ( (Autis* OR ASD* OR Asperger* OR “pervasive
developmental disorder*” OR PDD* OR “pervasive child development disorder*” OR
“pervasive childhood developmental disorder*” OR PCDD* OR “disintegrative disorder*”)
AND (diagnos*) AND (“systematic review*” OR “systematic literature review*” OR
“evidence synthes*” OR “meta-analy*” OR “meta-regress*”))
Limit to 2017-01-01 to present.

EMBASE

(Autis* OR ASD* OR Asperger* OR “pervasive developmental disorder*” OR PDD* OR

“pervasive child development disorder*” OR “pervasive childhood developmental
disorder*” OR PCDD* OR “disintegrative disorder*”) AND (diagnos*) AND (“systematic
review*” OR “systematic literature review*” OR “evidence synthes*” OR “metaanaly*” OR
“meta-regress*”) AND English language AND (2017:py OR 2018:py OR 2019:py OR
2020:py OR 2021:py, OR 2022:py)

Epistemonikos
(title:(Autis* OR ASD* OR Asperger* OR "pervasive developmental disorder*" OR PDD*
OR "pervasive child development disorder*" OR "pervasive childhood developmental
disorder*" OR PCDD* OR "disintegrative disorder*") OR abstract:(Autis* OR ASD* OR
Asperger* OR "pervasive developmental disorder*" OR PDD* OR "pervasive child
development disorder*" OR "pervasive childhood developmental disorder*" OR PCDD* OR
"disintegrative disorder*")) AND (title:(diagnos*) OR abstract:(diagnos*)) AND
(title:("systematic review*" OR "systematic literature review*" OR "evidence synthes*" OR
meta-analy* OR meta-regress*) OR abstract:("systematic review*" OR "systematic literature
review*" OR "evidence synthes*" OR meta-analy* OR meta-regress*)) Limit 2017 to 2022

ERIC

Ab((Autis* OR ASD* OR Asperger* OR “pervasive developmental disorder*” OR PDD*

OR “pervasive child development disorder*” OR “pervasive childhood developmental
disorder*” OR PCDD* OR “disintegrative disorder*”) AND (diagnos*) AND (“systematic
review*” OR “systematic literature review*” OR “evidence synthes*” OR “meta-analy*” OR
“meta-regress*”)) OR Ti((Autis* OR ASD* OR Asperger* OR “pervasive developmental
disorder*” OR PDD* OR “pervasive child development disorder*” OR “pervasive childhood
developmental disorder*” OR PCDD* OR “disintegrative disorder*”) AND (diagnos*) AND
(“systematic review*” OR “systematic literature review*” OR “evidence synthes*” OR
“meta-analy*” OR “meta-regress*”))
Limit to yr=”2017-current, English language only

Medline

Ab((Autis* OR ASD* OR Asperger* OR “pervasive developmental disorder*” OR PDD*

OR “pervasive child development disorder*” OR “pervasive childhood developmental
disorder*” OR PCDD* OR “disintegrative disorder*”) AND (diagnos*) AND (“systematic
review*” OR “systematic literature review*” OR “evidence synthes*” OR “meta-analy*” OR
“meta-regress*”)) AND Ti((Autis* OR ASD* OR Asperger* OR “pervasive developmental
disorder*” OR PDD* OR “pervasive child development disorder*” OR “pervasive childhood
developmental disorder*” OR PCDD* OR “disintegrative disorder*”) AND (diagnos*) AND
(“systematic review*” OR “systematic literature review*” OR “evidence synthes*” OR
“meta-analy*” OR “meta-regress*”))
Limit to: Published Date 20170101-; English language

PsycInfo

(Autis* OR ASD* OR Asperger* OR “pervasive developmental disorder*” OR

PDD* OR “pervasive child development disorder*” OR “pervasive childhood
developmental disorder*” OR PCDD* OR “disintegrative disorder*”) AND (diagnos*) AND
(“systematic review*” OR “systematic literature review*” OR “evidence
synthes*” OR “meta-analy*” OR “meta-regress*”).mp. [mp=title, abstract, heading
word, table of contents, key concepts, original title, tests & measures, mesh]
Limit to yr=”2017-current”, English language only
PubMed

(TITLE-ABS (Autis* OR ASD* OR Asperger* OR “pervasive developmental disorder*” OR

PDD* OR “pervasive child development disorder*” OR “pervasive childhood developmental
disorder*” OR PCDD* OR “disintegrative disorder*”) AND TITLE-ABS-KEY (diagnos*
AND TITLE-ABS-KEY (“systematic review*” OR “systematic literature review*” OR
“evidence synthes*” OR “metaanaly*” OR “meta-regress*”)) AND (LIMIT-TO (PUBYEAR,
2017)

Scopus

TITLE-ABS-KEY (Autis* OR ASD* OR Asperger* OR “pervasive developmental

disorder*” OR PDD* OR “pervasive child development disorder*” OR “pervasive childhood
developmental disorder*” OR PCDD* OR “disintegrative disorder*”) AND TITLE-ABS-
KEY (diagnos*) AND TITLE-ABS-KEY (“systematic review*” OR “systematic literature
review*” OR “evidence synthes*” OR “meta-analy*” OR “meta-regress*”) AND PUBYEAR
>2016 AND (LIMIT-TO (LANGUAGE, ‘English)

Web of Science

TI = ((Autis* OR ASD* OR Asperger* OR “pervasive developmental disorder*” OR PDD*

OR “pervasive child development disorder*” OR “pervasive childhood developmental
disorder*” OR PCDD* OR “disintegrative disorder*”) (diagnos*) AND (“systematic
review*” OR “systematic literature review*” OR “evidence synthes*” OR “meta-analy*” OR
“meta-regress*”)) OR AB = ((Autis* OR ASD* OR Asperger* OR “pervasive developmental
disorder*” OR PDD* OR “pervasive child development disorder*” OR “pervasive childhood
developmental disorder*” OR PCDD* OR “disintegrative disorder*”) (diagnos*) AND
(“systematic review*” OR “systematic literature review*” OR “evidence synthes*” OR
“meta-analy*” OR “meta-regress*”))
Index Date 2017-01-01 to 2024-01-01
 Update of the National Guideline for the Assessment and Diagnosis of Autism in
Australia

Appendix 4.2 Extraction Items for Characteristics of Included Systematic Reviews

Publication details

1. Title
2. List of all authors
3. Year of publication
4. Aims
5. Type of review (Narrative synthesis only; Meta-analysis with narrative synthesis)
6. Databases searched
7. Search start date
8. Search end date
9. Number of included systematic reviews
10. Number of autism-specific systematic reviews included
11. Continents where research was conducted

PCC and Design Characteristics

12. Population (e.g., parents of autistic children aged 0-12, autistic adolescents and adults,
physicians).
13. Number of participants
14. Concept/Context
15. Design

Additional information

16. Name of quality appraisal instrument

17. Lowest quality of included studies
18. Sources of funding specified
19. Sources of funding
20. Conflict(s) of interest specified
21. Conflict(s) of interest

Focus

22. Primary focus of systematic review (recommendation, process, factor, experience)

23. Secondary focus/es of systematic review
 Update of the National Guideline for the Assessment and Diagnosis of Autism in
Australia

Appendix 4.3 Qualitative Codebook

 Update of the Autism CRC Guideline for Assessment and Diagnosis of Autism

Coding Manual for Umbrella Review and Community Consultation

Version 1.2 (last modified 23/11/22)

Instructions for Coding

1. Before starting coding for the day, please review the ‘Coding Questions & Comments’ Tab in
Teams to see if there have been any updates
2. Find the file you have been allocated in Teams. Your file will be located in your own Teams
folder located in the ‘Data Files NVIVO’ folder. Your files will be dated, so please take note
to select the most recent file (This should be the file available)
3. Save the file in a folder on your computer that is safe and can be easily found and deleted
when coding is complete.
4. Open NVIVO - (If you have not already setup your NVIVO settings, please ensure the settings
are set to remind you to save the file at least every 15 minutes and add a two letter initials
for identifying purposes. For example, David would add DT in the initial sections.)
5. Check which questions you are required to code (see colour coding below, the upload
notification will confirm the questions requiring coding) and have a printed copy of the code
book beside you for your reference.
6. Review the codes and definitions to clarify your understanding.
7. You might find coding one column (i.e., participants’ responses to a question) at a time to be
easier, as each column will have a specific set of codes to consider within the coding
framework. Therefore, double check you are coding each response to the correct codes
assigned.
8. In situations where the participant’s response appears relevant to the question they were
asked, but does not clearly meet the definition of one or more codes, then code as 'other.'
9. Please write a journal/reflection on the process, during each coding session. This should be
done in NVIVO memo feature. Please reflect on any patterns you are seeing in the data (e.g.,
prominent themes); differences, contrasts, and/or contradictions in the responses; any
challenges you experienced in assigning codes; suggestions for possible new or revised
codes; reasons for why you may have coded a specific way or anything else that you, at that
time, felt was important. These memos not only provide you with a great way to document
the process and a source for recalling what you did and why, but are also a key aspect of the
methodology and thus important to analysing and interpreting the data.
10. Once you have finished coding all responses in your file, save the file and upload into your
Teams Data Files NVIVO Return folder. There is no need to change the file name.
11. Please notify Emma, in the Teams channel ‘Data Management' or in chat when you have
completed and uploaded your assigned response. Likewise, this channel also notifies when a
new data file for coding ready for each coder.
12. IMPORTANT – Please DO NOT change any of the comments and responses. Only assign
codes, as any changes to the text will impact file merging.

If you have any questions with coding, please ask via the ‘‘Coding Questions & Comments’ Tab in
Teams in the first instance, as this will provide us with a central and consistent way of documenting
and responding to these questions. You can share a chat message via the Teams chat or contact
Emma/David directly if you want to alert them to the new question/comment. Please do not
hesitate to any questions or share comments as this is an important part of the process.

Codebook for Assessment and Diagnostic Guideline 2022

Coding the Online Survey

• The sections and corresponding questions of the online survey that are to be coded are
outlined below in Table 1.
• See column ‘D’ for codes to be applied to each section
• Codes are defined in Table 4.

Table 1. Coding the online questionnaire

A. Section B. Question C. Question Label D. Coding framework Coding Instructions

Number to be applied
1. Sharing 1 What do you think is/was • Code for The same coder
views and good about the principles should code each
experiences of assessment and/or • If responses do participant’s
assessment diagnostic process? not map to responses to each of
and diagnosis existing these three
principles, code questions (i.e.,
as “Principles - reviews on good,
other” bad, and change),
• Code at ‘other’ if using the Principles
not related to codes presented
principles but below.
relevant for
consideration

1. Sharing 2 What do you think is/was • Code for

views and bad about the principles
experiences of assessment and/or • If responses do
assessment diagnostic process? not map to
and diagnosis) existing
principles, code
as “Principles -
other”
• Code at ‘other’ if
not related to
principles but
relevant for
consideration

1. Sharing 3 What do you think should • Code for

views and be done better? principles
experiences of • If responses do
assessment not map to
and diagnosis existing
principles, code
as “Principles -
other”
• Code at ‘other’ if
not related to
principles but
relevant for
consideration

Codebook for Assessment and Diagnostic Guideline 2022

 2. Sharing your 1 What are the most • Code at Code according to
views about important principles (e.g., principles Principles codes
specific evidence based, • If responses do presented below.
aspects of strengths focused) that not map to
assessment practitioners should existing
and diagnosis follow in the assessment principles, code
and diagnosis of autism? as “Principles -
other”
2. Sharing your 2 What are the most Code at Coding explanation
views about important considerations • When in tables below
specific for practitioners when • Who
aspects of making a referral for • Settings
assessment assessment • Knowledge +
and diagnosis and possible diagnosis of training
autism? • Info collected
• Decision
making
• Outcomes
• Info sharing
• Other
2. Sharing your 3 What are the most Code at Coding explanation
views about important considerations • When in tables below
specific for practitioners when • Who
aspects of conducting an • Settings
assessment assessment of • Knowledge +
and diagnosis functioning* that may training
lead to a diagnosis of • Info collected
autism? • Decision
making
• Outcomes
• Info sharing
• Other
2. Sharing your 4 What are the most Code at Coding explanation
views about important considerations • When in tables below
specific for practitioners when • Who
aspects of conducting a medical • Settings
assessment evaluation* as • Knowledge +
and diagnosis part of a possible training
diagnosis of autism? • Info collected
• Decision
making
• Outcomes
• Info sharing
• Other
2. Sharing your 5 What are the most Code at Coding explanation
views about important considerations • When in tables below
specific for practitioners when • Who
aspects of conducting a diagnostic • Settings
assessment assessment* • Knowledge +
and diagnosis as part of a possible training
diagnosis of autism? • Info collected
• Decision
making
• Outcomes
• Info sharing

Codebook for Assessment and Diagnostic Guideline 2022

 • Other
2. Sharing your 6 What are the most Code at Coding explanation
views about important considerations • When in tables below
specific for practitioners to • Who
aspects of ensure the safety and • Settings
assessment wellbeing of individuals • Knowledge +
and diagnosis during the assessment training
and diagnostic • Info collected
Process? • Decision
making
• Outcomes
• Info sharing
• Other
3. Views about 7 If you haven’t already • Code for Code according to
existing identified these, what are principles Principles codes
guideline the barriers to • If responses do presented below.
implementing the not map to
Recommendations in the existing
existing guideline? principles, code
as “Principles -
other”
• Code at ‘other’ if
not related to
principles but
relevant for
consideration

3. Views about 8 If you haven’t already • Code for Code according to

existing identified these, what are principles Principles codes
guideline the enablers to • If responses do presented below.
implementing the not map to
Recommendations in the existing
existing guideline? principles, code
as “Principles -
other”
• Code at ‘other’ if
not related to
principles but
relevant for
consideration

Codebook for Assessment and Diagnostic Guideline 2022

Coding focus group transcripts

• The questions and corresponding codes are outlined below in Table 2.

• See column ‘D’ for codes to be applied to each section
• Codes are defined in Table 4.

Table 2. Coding focus group transcripts

A. Section B. C. Question Label D. Coding framework to Coding

Question be applied Instructions
Number
1. Sharing 1 What do you think is/was • Code for principles The same coder
views and good about the • If responses do not should coder
experiences assessment and/or map to existing should code the
of diagnostic process? principles, code as whole transcript
assessment “Principles - other” (i.e., responses to
and • Code at ‘other’ if not all questions)
diagnosis related to principles using Principles.
but relevant for
consideration

1. Sharing 2 What do you think is/was • Code for principles

views and bad about the assessment • If responses do not
experiences and/or diagnostic map to existing
of process? principles, code as
assessment “Principles - other”
and • Code at ‘other’ if not
diagnosis) related to principles
but relevant for
consideration

1. Sharing 3 What do you think should • Code for principles

views and be done better? • If responses do not
experiences map to existing
of principles, code as
assessment “Principles - other”
and • Code at ‘other’ if not
diagnosis related to principles
but relevant for
consideration

Codebook for Assessment and Diagnostic Guideline 2022

Coding Systematic Reviews

• The sections and corresponding codes are outlined below in Table 3.

• See column ‘D’ for codes to be applied.
• Codes are defined in Table 4.

Table 3. Coding systematic reviews

A. Section B. C. Question Label D. Coding framework to Coding

Question be applied Instructions
Number
Abstract N/A N/A All codes presented in The same coder
and Results Table 4 may be used. should code the
abstract and
results for each
systematic
review. More
than one code
may be applied
to a section of
text in the
systematic
review.

Codebook for ADG Update 2022-2023 6 of 8

Codes and Definitions

Table 4 presents a list of codes and their definitions that should be used when coding information
gathered through the umbrella review and community consultation activities.

Table 4. Codes and definitions.

Code Definition
Principles
Individual and Family Assessments should be individual and family-centred, with their
Centred: unique reasons for seeking assessment, preferences, and
circumstances respected, valued, and supported.
Strengths-focused: Assessments and the sharing of findings should focus on the
individual’s strengths including personality traits, interests,
functional skills, and supports that are personally meaningful to
them and promote their learning, participation, and wellbeing.
Holistic: Assessments should seek to understand all aspects of the
individual, their family, and context, their life history and future
aspirations, to the extent that is relevant to the purpose of the
assessment and that they are comfortable to share.
Comprehensive: Assessments should involve the gathering of all relevant
information from all relevant people.
Appropriate: Information should be gathered and shared in ways that are valid,
accurate, respectful, and relevant for the individual, their family,
and the context.
Helpful: Assessments should answer the questions individuals and families
have, provide a pathway to supports where relevant, and involve
sharing findings in ways that are relevant to the people and for the
purpose intended.
Ethical: Assessments should be conducted in ways that are ethical, to
protect the rights of individuals and their families.
Evidence Based: Assessment and diagnosis practices should reflect the best
available evidence from research, evidence from clinical practice
and lived experience, and the preferences and priorities of the
individual and their family.
Culturally safe: Practitioners should acknowledge and respect the values,
knowledge, preferences and cultural perspectives of the individual
and their family; adopt culturally safe practices; and reflect on
their own cultural knowledge and competency in their practice.
Neurodiversity- Assessment and diagnosis should be neurodiversity-affirming,
affirming: embracing each person’s unique understanding of other people
and the world around them.
Respecting Australia’s [To be developed – for the SCG we had Supports should be
First Nations Peoples: culturally safe for Aboriginal and Torres Strait Islander Peoples,
built on an acknowledgment of the barriers to accessing supports
that they may experience, an understanding of current and

Codebook for ADG Update 2022-2023 7 of 8

 historical truths and their enduring impact; and respect for deep
connection to Country, language, customs, and traditions.]
Competent: Practitioners involved in assessment and diagnosis should have
qualifications, knowledge, skills, experience, supervision, and
professional regulation that is relevant to assessment and
differential diagnosis of autism.
Timely and Accessible: Every person should be able to access assessment and diagnostic
services in a timely accessible manner, regardless of who they are,
where they live, or how much money they have.
Coordinated: Practitioners should contribute to a coordinated approach to
assessment and diagnosis, that increases access and reduces
burden for individuals and their families.
Other Please code as other when there is evidence for a principle that is
not accounted for by one or more existing principles above.
Process of Assessment and/or Diagnosis
When Evidence is presented in relation to when should this be
considered?
Who Evidence is presented in relation to who should be involved?
Settings Evidence is presented in relation to in what settings should it
occur?
Knowledge + training Evidence is presented in relation to what knowledge, skills,
training, and support are required?
Info collected_what Evidence is presented in relation to what information should be
collected?
Info collected_how Evidence is presented in relation to how should information be
collected?
Decision making Evidence is presented in relation to how should decisions be
made?
Outcomes Evidence is presented in relation to what should be the
outcomes?
Info sharing Evidence is presented in relation to how should information be
shared?
Other Please code as other when there is evidence that is relevant to
purpose of the Guideline but does not align with any of the codes
above.
Quality and Safety
Quality Evidence is presented in relation to how should the quality of
assessment and diagnostic services be ensured?
Safety Evidence is presented in relation to how should the safety of
assessment and diagnostic services be ensured?

Codebook for ADG Update 2022-2023 8 of 8

Update of the National Guideline for the Assessment and Diagnosis of Autism in Australia

Appendix 4.4 JBI Critical Appraisal Checklist

NB: A ‘Yes’ decision requires all checkboxes under a single item to be met, unless the
criteria specifically state otherwise (i.e., use an ‘OR’ qualifier). If all checkboxes are not met,
a ‘No’ decision should be specified.

CODING: Yes (Low Risk of Bias); No (High Risk of Bias); Not applicable (Item 9 only)

1. Is the review question clearly and explicitly stated?

 The review presents one or more aims/questions that specify the population,
concept, and context.

2. Were the inclusion criteria appropriate for the review question?

 The PCC elements and design were clearly defined in the inclusion and/or
exclusion criteria.
 The PCC elements were relevant to the objectives of the review and/or the
research questions

3. Was the search strategy appropriate?

 The search strategy included key words and/or index terms that specified the key
PCC elements
 Date and language limits appropriate and/or justified

4. Were the sources and resources used for the study adequate?
 Included at least two major bibliographic databases relevant to the review
question, from the following list: Medline, CINAHL, PsycINFO, PubMed,
EMBASE, Scopus, Web of Science, and ERIC
 Attempt to search for grey literature (e.g. websites relevant to the review
question, thesis repositories, trial registries)

5. Were criteria for appraising the studies appropriate?

 Clear statement that critical appraisal was conducted
 Details of the items that were used to assess the included studies (within
methods, appendix, or further reference) were outlined and appropriate for the
relevant study design

6. Was critical appraisal conducted by two or more reviewers independently?

 Critical appraisal was conducted by two reviewers working independently from
each other and conferring when needed to make a decision; OR
 Two reviewers conducted critical appraisal with at least 10% of eligible studies
and achieved good agreement (at least 80% or Cohen’s kappa = 0.6 or greater),
with the remainder extracted by one reviewer

7. Were there methods to minimise errors in data extraction?

 All data extraction was conducted by two reviewers working independently; OR
  Two reviewers extracted data with a sample of eligible studies and achieved
good agreement (at least 80% or Cohen’s kappa = 0.6 or greater), with the
remainder extracted by one reviewer

8. Were the methods used to combine studies appropriate?

• Meta-analyses
 A statement about the extent to which the studies were appropriate to be
combined
 Assessment of heterogeneity
 Explanation for heterogeneity that may be present
• Narrative synthesis
 Methods for data synthesis are congruent with the stated methodology
 Adequate information is provided to support the synthesised findings
• Meta-analyses and narrative synthesis
 Summary/extraction tables were structured to provide sufficient information to
ascertain the key PCC elements and design for each included study

9. Was the likelihood of publication bias assessed? (meta-analyses only)

 Publication bias was assessed (e.g., a funnel plot for 10 or more studies, Egger’s
test Begg test, or Harbord test)
 N/A

10. Were recommendations for policy and/or practice supported by the reported data?
 Clear link made between the results of the review and recommendations for policy
and practice
 The strengths of the findings and the quality of the research considered in the
formulation of the review recommendations

11. Were the specific directives for new research appropriate?

 Indication of directions for further research
 Update of the National Guideline for the Assessment and Diagnosis of Autism in
Australia

Appendix 4.5 Articles excluded during full-text screen and extraction with reasons
*Indicates an article excluded during extraction

Exclusion reason: Does not address research question (n = 56)

Alqaysi, M. E., Albahri, A. S., & Hamid, R. A. (2022). Diagnosis-based hybridization of

multimedical tests and sociodemographic characteristics of autism spectrum disorder
using artificial intelligence and machine learning techniques: A systematic
review. International Journal of Telemedicine and Applications, 3551528.
https://doi.org/10.1155/2022/3551528

Ansel, A., Posen, Y., Ellis, R., Deutsch, L., Zisman, P. D., & Gesundheit, B. (2019). Biomarkers for
autism spectrum disorders (ASD): A Meta-analysis. Rambam Maimonides Medical
Journal, 10(4), e0021. https://doi.org/10.5041/RMMJ.10375

Ayoub, M. J., Keegan, L., Tager-Flusberg, H., & Gill, S. V. (2022). Neuroimaging Techniques as
Descriptive and Diagnostic Tools for Infants at Risk for Autism Spectrum Disorder: A
Systematic Review. Brain Sciences, 12(5), 602-614.
https://doi.org/10.3390/brainsci12050602

Boterberg, S., Charman, T., Marschik, P. B., Bölte, S., & Roeyers, H. (2019). Regression in autism
spectrum disorder: A critical overview of retrospective findings and recommendations
for future research. Neuroscience and Biobehavioral Reviews, 102, 24–55.
https://doi.org/10.1016/j.neubiorev.2019.03.013

Bourson, L., & Prevost, C. (2022). Characteristics of restricted interests in girls with ASD
compared to boys: A systematic review of the literature. European Child & Adolescent
Psychiatry, 1-18. https://doi.org/10.1007/s00787-022-01998-5

Brignell, A., Albein‐Urios, N., Woolfenden, S., Hayen, A., Iorio, A., & Williams, K. (2017). Overall
prognosis of preschool autism spectrum disorder diagnoses. Cochrane Database of
Systematic Reviews, 8, 1-124. https://doi.org/10.1002/14651858.CD012749.

Canu, D., Van der Paelt, S., Canal-Bedia, R., Posada, M., Vanvuchelen, M., & Roeyers, H. (2020).
Early non-social behavioural indicators of autism spectrum disorder (asd) in siblings at
elevated likelihood for asd: a systematic review. European Child & Adolescent
Psychiatry, 30(4), 497–538. https://doi.org/10.1007/s00787-020-01487-7

Cavus, N., Lawan, A. A., Ibrahim, Z., Dahiru, A., Tahir, S., Abdulrazak, U. I., Hussaini, A., & Torres,
E. B. (2021). A systematic literature review on the application of machine-learning
models in behavioral assessment of autism spectrum disorder. Journal of Personalized
Medicine, 11(4), 229-245. https://doi.org/10.3390/jpm11040299
Clairmont, C., Wang, J., Tariq, S., Sherman, H. T., Zhao, M., & Kong, X. J. (2022). The value of
brain imaging and electrophysiological testing for early screening of autism spectrum
disorder: A systematic review. Frontiers in Neuroscience, 15, 1-20.
https://doi.org/10.3389/fnins.2021.812946

Conti, E., Scaffei, E., Bosetti, C., Marchi, V., Costanzo, V., Dell’Oste, V., ... & Battini, R. (2022).
Looking for “fNIRS Signature” in Autism Spectrum: A Systematic Review Starting From
Preschoolers. Frontiers in Neuroscience, 16. https://doi.org/10.3389/fnins.2022.785993

de Belen, R. A. J., Bednarz, T., Sowmya, A., & Del Favero, D. (2020). Computer vision in autism
spectrum disorder research: A systematic review of published studies from 2009 to
2019. Translational Psychiatry, 10(1), 333-353. https://doi.org/10.1038/s41398-020-
01015-w

DeBoth, K. K., & Reynolds, S. (2017). A systematic review of sensory-based autism subtypes.
Research in Autism Spectrum Disorders, 36, 44–56.
https://doi.org/10.1016/j.rasd.2017.01.005

Demetriou, E. A., Lampit, A., Quintana, D. S., Naismith, S. L., Song, Y. J., Pye, J. E., ... & Guastella,
E. A. (2018). Autism spectrum disorders: A meta-analysis of executive
function. Molecular psychiatry, 23(5), 1198-1204. https://doi.org/10.1038/mp.2017.75

Diniz, N. L. F., Parlato-Oliveira, E., Pimenta, P. G. A., Araújo, L. A. D., & Valadares, E. R. (2022).
Autism and Down syndrome: Early identification and diagnosis. Arquivos de Neuro-
Psiquiatria, 80, 620-630. https://doi.org/10.1590/0004-282X-ANP-2021-0156

Engstrand, R. Z., Klang, N., Hirvikoski, T., Westling Allodi, M., & Roll-Pettersson, L. (2018).
Reporting of cultural factors in autism research publications in Sweden: Application of
the gap-reach checklist. Review Journal of Autism and Developmental Disorders, 5(4),
390–407. https://doi.org/10.1007/s40489-018-0147-3

Frye, R. E., Vassall, S., Kaur, G., Lewis, C., Karim, M., & Rossignol, D. (2019). Emerging
biomarkers in autism spectrum disorder: A systematic review. Annals of Translational
Medicine, 7(23), 792-813. https://doi.org/10.21037/atm.2019.11.53

Gargot, T., Archambault, D., Chetouani, M., Cohen, D., Johal, W., & Anzalone, S. M. (2020). P.
114 Automatic assessment of motors impairments in autism spectrum disorders: A
systematic review. European Neuropsychopharmacology, 40, S71-S72.

Gautam, R., & Sharma, M. (2020). Prevalence and diagnosis of neurological disorders using
different deep learning techniques: A meta-analysis. Journal of Medical Systems, 44(2),
49-73. https://doi.org/10.1007/s10916-019-1519-7
Gillett, G., Leeves, L., Patel, A., Prisecaru, A., Spain, D., & Happé, F. (2022). The prevalence of
autism spectrum disorder traits and diagnosis in adults and young people with
personality disorders: A systematic review. Australian & New Zealand Journal of
Psychiatry, 20220819. https://doi.org/10.1177/00048674221114603

Grove, J., Carey, C., & of the Psychiatric, A. W. G. (2022). 5.“Are we there yet?” Reporting on a
GWAS of autism. European Neuropsychopharmacology, 63, e46.

Guo, B.-Q., Ding, S.-B., & Li, H.-B. (2020). Blood biomarker levels of methylation capacity in
autism spectrum disorder: A systematic review and meta-analysis. Acta Psychiatrica
Scandinavica, 141(6), 492–509. https://doi.org/10.1111/acps.13170

Gurau, O., Bosl, W. J., & Newton, C. R. (2017). How useful is electroencephalography in the
diagnosis of autism spectrum disorders and the delineation of subtypes: A systematic
review. Frontiers in Psychiatry, 8. https://doi.org/10.3389/fpsyt.2017.00121

Hosseinzadeh, M., Koohpayehzadeh, J., Bali, A. O., Rad, F. A., Souri, A., Mazaherinezhad, A.,
Rezapour, A., & Bohlouli, M. (2020). A review on diagnostic autism spectrum disorder
approaches based on the internet of things and machine learning. The Journal of
Supercomputing: An International Journal of High-Performance Computer Design,
Analysis, and Use, 77(3), 2590–2608. https://doi.org/10.1007/s11227-020-03357-0

Joudar, S. S., Albahri, A. S., & Hamid, R. A. (2022). Triage and priority-based healthcare diagnosis
using artificial intelligence for autism spectrum disorder and gene contribution: A
systematic review. Computers in Biology and Medicine, 146.
https://doi.org/10.1016/j.compbiomed.2022.105553

Katarína, J., Klaudia, K., Daniela, O., & Gabriela, R. (n.d.). Potential of salivary biomarkers in
autism research: A systematic review. International Journal of Molecular Sciences, 22,
10873–10873. https://doi.org/10.3390/ijms221910873

Kaur, P., & Sharma, M. (2019). Diagnosis of human psychological disorders using supervised
learning and nature-inspired computing techniques: a meta-analysis. Journal of Medical
Systems, 43(7), 1–30. https://doi.org/10.1007/s10916-019-1341-2

Kollias, K. F., Syriopoulou-Delli, C. K., Sarigiannidis, P., & Fragulis, G. F. (2021). The Contribution
of Machine Learning and Eye-Tracking Technology in Autism Spectrum Disorder
Research: A Systematic Review. Electronics, 10(23), 2982-3000.
https://doi.org/10.3390/electronics10232982

Lau, W. K. W., Leung, M.-K., & Lau, B. W. M. (2019). Resting-state abnormalities in autism
spectrum disorders: A meta-analysis. Scientific Reports, 9(1), 1–8.
https://doi.org/10.1038/s41598-019-40427-7
Lim, Y. H., Licari, M., Spittle, A. J., Watkins, R. E., Zwicker, J. G., Downs, J., & Finlay-Jones, A.
(2021). Early motor function of children with autism spectrum disorder: A systematic
review. Pediatrics, 147(2), e2020011270. https://doi.org/10.1542/peds.2020-011270

Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the male-to-female ratio in autism
spectrum disorder? A systematic review and meta-analysis. Journal of the American
Academy of Child & Adolescent Psychiatry, 56(6), 466-474.
https://doi.org/10.1016/j.jaac.2017.03.013

MacLeod, A. (2019). Interpretative phenomenological analysis (ipa) as a tool for participatory

research within critical autism studies: a systematic review. Research in Autism
Spectrum Disorders, 64, 49–62. https://doi.org/10.1016/j.rasd.2019.04.005

Marciano, F., Venutolo, G., Ingenito, C. M., Verbeni, A., Terracciano, C., Plunk, E., ... & Fasano,
A. (2021). Artificial Intelligence: the “Trait D’Union” in Different Analysis Approaches of
Autism Spectrum Disorder Studies. Current Medicinal Chemistry, 28(32), 6591-6618.
https://doi.org/10.2174/0929867328666210203205221

McVoy, M., Lytle, S., Fulchiero, E., Aebi, M. E., Adeleye, O., & Sajatovic, M. (2019). A systematic
review of quantitative EEG as a possible biomarker in child psychiatric disorders.
Psychiatry Research, 279, 331-344. https://doi.org/10.1016/j.psychres.2019.07.004

McVoy, M., Lytle, S., Sajatovic, M., & Fulchiero, E. (2018). A Systematic Review of Quantitative
Electroencephalogram (QEEG) as a Possible Biomarker in Child Psychiatric Disorders.
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Mehra, C., Sil, A., Hedderly, T., Kyriakopoulos, M., Lim, M., Turnbull, J., Happe, F., Baird, G., &
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systematic review. Developmental Medicine and Child Neurology, 61(5), 523–534.
https://doi.org/10.1111/dmcn.14126
Melbye, S., Kessing, L. V., Bardram, J. E., & Faurholt-Jepsen, M. (2020). Smartphone-based self-
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young adults with psychiatric disorders: systematic review. JMIR Mental Health, 7(10),
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Minissi, M. E., Chicchi Giglioli, I. A., Mantovani, F., & Alcañiz Raya, M. (2021). Assessment of the
autism spectrum disorder based on machine learning and social visual attention: A
systematic review. Journal of Autism and Developmental Disorders, 52(5), 2187–2202.
https://doi.org/10.1007/s10803-021-05106-5
Miranda, L., Paul, R., Puetz, B., Koutsouleris, N., & Mueller-Myhsok, B. (2021). Systematic
review of functional MRI applications for psychiatric disease subtyping. Frontiers in
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Moon, S. J., Hwang, J., Kana, R., Torous, J., & Kim, J. W. (2019). Accuracy of machine learning
algorithms for the diagnosis of autism spectrum disorder: Systematic review and meta-
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Moreau, C. A., Raznahan, A., Bellec, P., Chakravarty, M., Thompson, P. M., & Jacquemont, S.
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Mutluer, T., Genç, H. A., Morey, A. Ö., Eser, H. Y., Ertinmaz, B., Can, M., & Munir, K. (2022).
Population-Based Psychiatric Comorbidity in Children and Adolescents With Autism
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Pagnozzi, A. M., Conti, E., Calderoni, S., Fripp, J., & Rose, S. E. (2018). A systematic review of
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Rahman, S., Ahmed, S. F., Shahid, O., Arrafi, M. A., & Ahad, M. A. R. (2021). Automated
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Sadeghiyeh, T., Dastgheib, S. A., Mirzaee-Khoramabadi, K., Morovati-Sharifabad, M., Akbarian-

Bafghi, M. J., Poursharif, Z., Mirjalili, S. R., & Neamatzadeh, H. (2019). Association of
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Song, D.-Y., Topriceanu, C.-C., Ilie-Ablachim, D. C., Kinali, M., & Bisdas, S. (2021). Machine
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Takagi, S., Hori, H., Yamaguchi, T., Ochi, S., Nishida, M., Maruo, T., & Takahashi, H. (2022).
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Timms, S., Lodhi, S., Bruce, J., & Stapleton, E. (2022). Auditory symptoms and autistic spectrum
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Vacas, J., Antolí, A., Sánchez-Raya, A., & Pérez-Dueñas, C. (2021). Emotional Competence in
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Ziegler, A., Rudolph-Rothfeld, W., & Vonthein, R. (2017). Genetic testing for autism spectrum
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Exclusion reason: Duplicate (n = 3)

Guan, X., Zwaigenbaum, L., & Sonnenberg, L. K. (2022). Building capacity for community
pediatric autism diagnosis: a systemic review of physician training programs. Journal of
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Sukiennik, R., Marchezan, J., & Scornavacca, F. (2022). Challenges on diagnoses and
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Tonacci, A., Billeci, L., Tartarisco, G., Ruta, L., Muratori, F., Pioggia, G., & Gangemi, S. (2017).
Olfaction in autism spectrum disorders: A systematic review. Child
Neuropsychology, 23(1), 1-25. https://doi.org/10.1080/09297049.2015.1081678

Exclusion reason: Excluded article type (n = 7)

Divan, G., Bhavnani, S., Leadbitter, K., Ellis, C., Dasgupta, J., Abubakar, A., Elsabbagh, M.,
Hamdani, S. U., Servili, C., Patel, V., & Green, J. (2021). Annual research review:
Achieving universal health coverage for young children with autism spectrum disorder in
low- and middle-income countries: A review of reviews. Journal of Child Psychology and
Psychiatry, 62(5), 514–535. https://doi.org/10.1111/jcpp.13404

Duffield, T. C., Parsons, T. D., Landry, A., Karam, S., Otero, T, Mastel, S & Hall, T. A. (2018).
Virtual environments as an assessment modality with pediatric ASD populations: A brief
report. Child Neuropsychology (Neuropsychology, Development and Cognition: Section
C), 24(8), 1129–1136. https://doi.org/10.1080/09297049.2017.1375473

Geng, X., Kang, X., & Wong, P. C. M. (2020). Autism spectrum disorder risk prediction: A
systematic review of behavioral and neural investigations. Progress in Molecular Biology
and Translational Science, 173, 91–137. https://doi.org/10.1016/bs.pmbts.2020.04.015

Loth, E., Garrido, L., Ahmad, J., Watson, E., Duff, A., & Duchaine, B. (2018). Facial expression
recognition as a candidate marker for autism spectrum disorder: How frequent and
severe are deficits? Molecular Autism, 9(1), 1-11. https://doi.org/10.1186/s13229-018-
0187-7

Robles, N., i Ribas, C. C., Pàmias, M., Parra, I., Conesa, J., Perez-Navarro, A., Alabert, M., &
Aymerich. M. (2019). PP166 A Mobile Clinical Decision Support System for Autism
 Spectrum Disorder. International Journal of Technology Assessment in Health
Care, 35(S1), 68-69. https://doi.org/10.1017/S0266462319002654

Shminan, A. S., Sharif, S., Choi, L. J., & Fauzan, N. (2019). Insight of Autism Screening
Intervention and Its Correlation. Proceedings of EDULEARN19 Conference, 9531-9540.

Smith-Young, J., Murray, C., & Swab, M. (2018). Parents' and guardians' experiences of barriers
and facilitators in accessing autism spectrum disorder diagnostic services for their
children: A systematic review protocol of qualitative evidence. JBI Database of
Systematic Reviews and Implementation Reports, 16(5), 1141–1146.
https://doi.org/10.11124/JBISRIR-2017-003437

Exclusion reason: No full text (n = 6)

Doherty, A. J., Atherton, H., Boland, P., Hastings, R. P., Hives, L., Hood, K., ... & Chauhan, U.
(2019). Barriers and facilitators to primary health care for physical and or mental health
issues experienced by adolescents and adults with intellectual disabilities (only), autism
(only), or both: an integrative review. In: World Congress of the International
Association for the Scientific Study of Intellectual and Developmental Disabilities, 6th-9th
August 2019, Glasgow. (Unpublished)

Gale, E., Bradshaw, J., Gullon-Scott, F., & Langdon, P. (2019). Development of a female autism
spectrum screening tool (FASST). Journal of Intellectual Disability Research, 63(7), 887-
887.

Jackman, A., Boyd, K., Tjosvold, L., Zwaigenbaum, L., & Phelan, S. (2020). 57 The family
experience of the Autism Spectrum Disorder diagnostic conference: A qualitative meta-
synthesis. Paediatrics & Child Health, 25(Supplement_2), e23-e24.
https://doi.org/10.1093/pch/pxaa068.056

Lonergan, R. M. (2021). Gender balance in the validation of diagnostic tools for autism: A
systematic review. European Psychiatry, 64(S1), S599-S599.
https://doi.org/10.1192/j.eurpsy.2021.1598

Ogundele, M. O., & Ayyash, H. F. (2019). G659 Evidence-based multidisciplinary assessment and
management of children and adolescents with neurodevelopmental disorders. Archives
of Disease in Childhood, 104, A268. http://dx.doi.org/10.1136/archdischild-2019-
rcpch.638

Vllasaliu, L., Jensen, K., Dose, M., Hagenah, U., Hollmann, H., Kamp-Becker, I., ... & Freitag, C. M.
(2018). The diagnostics of autism spectrum disorder in children, adolescents and adults:
Overview of the key questions and main results of the first part of the German AWMF-
 S3-clinical guideline. Zeitschrift fur Kinder-und Jugendpsychiatrie und
Psychotherapie, 47(4), 359-370. https://doi.org/10.1024/1422-4917/a000621

Exclusion reason: No in English (n = 3)

Martinot, M., Giacobi, C., De Stefano, C., Rezzoug, D., Baubet, T., & Klein, A. (2020). Age at
diagnosis of Autism Spectrum Disorder depending on ethno-cultural background or
migratory status: A systematic literature review. L'encephale.
https://doi.org/10.1016/j.encep.2020.06.007

Reynoso, C., Rangel, M. J., & Melgar, V. (2017). Autism spectrum disorder: Etiological,
diagnostic and therapeutic aspects. Revista Médica del Instituto Mexicano del Seguro
Social, 55(2), 214.

Silva, C. C., & Elias, L. C. D. S. (2020). Assessment Tools for Autism Spectrum Disorder: A
Systematic Review. Avaliação Psicológica, 19(2), 189-197.
http://dx.doi.org/10.15689/ap.2020.1902.09.

Exclusion reason: Not related to guiding clinicians’ practice (n = 19)

Alallawi, B., Hastings, R. P., & Gray, G. (2020). A systematic scoping review of social,
educational, and psychological research on individuals with autism spectrum disorder
and their family members in Arab countries and cultures. Review Journal of Autism and
Developmental Disorders, 7(4), 364–382. https://doi.org/10.1007/s40489-020-00198-8

Benallie, K. J., McClain, M. B., Bakner, K. E., Roanhorse, T., & Ha, J. (2021). Executive functioning
in children with ASD+ADHD and ASD+ID: A systematic review. Research in Autism
Spectrum Disorders, 86. https://doi.org/10.1016/j.rasd.2021.101807

Briot, K., Pizano, A., Bouvard, M., & Amestoy, A. (2021). New technologies as promising tools
for assessing facial emotion expressions impairments in ASD: A systematic review.
Frontiers in Psychiatry, 12. https://doi.org/10.3389/fpsyt.2021.634756

Chellew, T., Barbaro, J., & Freeman, N. C. (2022). The Early Childhood Signs of Autism in
Females: A Systematic Review. Review Journal of Autism and Developmental Disorders,
1-16. https://doi.org/10.1007/s40489-022-00337-3

Chen, M. T., Lu, X., Simeonsson, R. J., Marraccini, M. E., & Chang, Y. P. (2022). Meta-analysis-
tested formal models of potential mechanisms underlying females’ low autism-
spectrum-disorder diagnosis rate compared to males’. Research in Autism Spectrum
Disorders, 98, 102047. https://doi.org/10.1016/j.rasd.2022.102047
Chesnut, S. R., Wei, T., Barnard-Brak, L., & Richman, D. M. (2017). A meta-analysis of the social
communication questionnaire: Screening for autism spectrum disorder. Autism, 21(8),
920–928. https://doi.org/10.1177/13623613166600

DeLucia, E. A., Dike, J., Andrzejewski, T. M., & McDonnell, C. G. (2022). Autism Screening
Practices in Preschools and Early Childcare Centers: A Systematic Review. Review Journal
of Autism and Developmental Disorders, 1-20. https://doi.org/10.1007/s40489-022-
00323-9

de Miranda Seize, M., & Juliane, C. B. (2017). Instruments to screen the early signs of autism:
systematic review. Psico-Usf, 22(1), 161–176. https://doi.org/10.1590/1413-
82712017220114

Hirota, T., So, R., Kim, Y. S., Leventhal, B., & Epstein, R. A. (2018). A systematic review of
screening tools in non-young children and adults for autism spectrum disorder. Research
in Developmental Disabilities, 80, 1–1. https://doi.org/10.1016/j.ridd.2018.05.017

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. https://doi.org/10.1177/13623613166690

Metcalfe, D., McKenzie, K., McCarty, K., & Murray, G. (2020). Screening tools for autism
spectrum disorder, used with people with an intellectual disability: A systematic review.
Research in Autism Spectrum Disorders, 74. https://doi.org/10.1016/j.rasd.2020.101549

Moon, S. J., Hwang, J. S., Shin, A. L., Kim, J. Y., Bae, S. M., Sheehy-Knight, J., & Kim, J. W. (2019).
Accuracy of the childhood autism rating scale: A systematic review and meta-analysis.
Developmental Medicine & Child Neurology, 61(9), 1030–1038.
https://doi.org/10.1111/dmcn.14246

Moseley, R. L., Hitchiner, R., & Kirkby, J. A. (2018). Self-reported sex differences in high-
functioning adults with autism: A meta-analysis. Molecular Autism, 9(1), 1–12.
https://doi.org/10.1186/s13229-018-0216-6

Shatananda, S., Oyedokun, A., Odiyoor, M., Jaydeokar, S., & Shahzad, S. (2022). Usefulness of
current autism diagnostic or screening assessment tools in adults with intellectual
disability (id): Systematic review of literature. Advances in Autism, 8(2), 117–131.
https://doi.org/10.1108/AIA-01-2021-0008

Xie, R., Sun, X., Yang, L., & Guo, Y. (2020). Characteristic executive dysfunction for high-
functioning autism sustained to adulthood. Autism Research, 13(12), 2102.
https://doi.org/10.1002/aur.2304
Valentine, A. Z., Brown, B. J., Groom, M. J., Young, E., Hollis, C., & Hall, C. L. (2020). A systematic
review evaluating the implementation of technologies to assess, monitor and treat
neurodevelopmental disorders: a map of the current evidence. Clinical Psychology
Review, 80. https://doi.org/10.1016/j.cpr.2020.101870

Wang, J., Hedley, D., Bury, S. M., & Barbaro, J. (2020). A systematic review of screening tools for
the detection of autism spectrum disorder in mainland China and surrounding regions.
Autism, 24(2), 285–296. https://doi.org/10.1177/1362361319871174

Wigham, S., Rodgers, J., Berney, T., Le Couteur, A., Ingham, B., & Parr, J. R. (2019). Psychometric
properties of questionnaires and diagnostic measures for autism spectrum disorders in
adults: a systematic review. Autism, 23(2), 287–305.
https://doi.org/10.1177/1362361317748

Wood-Downie, H., Wong, B., Kovshoff, H., Cortese, S., & Hadwin, J. A. (2021). Research review:
a systematic review and meta-analysis of sex/gender differences in social interaction
and communication in autistic and nonautistic children and adolescents. Journal of Child
Psychology and Psychiatry, 62(8), 922. https://doi.org/10.1111/jcpp.13337

Exclusion reason: Not systematic (n = 11)

*Allely, C. S. (2019). Understanding and recognising the female phenotype of autism spectrum
disorder and the “camouflage” hypothesis: A systematic PRISMA review. Advances in
Autism, 5(1), 14–37. https://doi.org/10.1108/AIA-09-2018-0036

*Dahiya, A. V., DeLucia, E., McDonnell, C. G., & Scarpa, A. (2021). A systematic review of
technological approaches for autism spectrum disorder assessment in children:
implications for the covid-19 pandemic. Research in Developmental Disabilities, 109.
https://doi.org/10.1016/j.ridd.2021.103852

*Hayes, J., Ford, T., Rafeeque, H., & Russell, G. (2018). Clinical practice guidelines for diagnosis
of autism spectrum disorder in adults and children in the UK: a narrative review. BMC
Psychiatry, 18(1), 1-25. https://doi.org/10.1186/s12888-018-1800-1

Kelly, C., Sharma, S., Jieman, A. T., & Ramon, S. (2022). Sense-making narratives of autistic
women diagnosed in adulthood: A systematic review of the qualitative
research. Disability & Society, 1-33. https://doi.org/10.1080/09687599.2022.2076582

*Makino, A., Hartman, L., King, G., Wong, P. Y., & Penner, M. (2021). Parent experiences of
autism spectrum disorder diagnosis: a scoping review. Review Journal of Autism and
Developmental Disorders, 8(3), 267–284. https://doi.org/10.1007/s40489-021-00237-y
McCrimmon, A. W., & Gray, S. M. (2020). A systematic review of factors relating to parental
satisfaction with the diagnostic process for autism spectrum disorder. Review Journal of
Autism and Developmental Disorders, 8(3), 334–349. https://doi.org/10.1007/s40489-
020-00224-9

*Rinaldi, C., Attanasio, M., Valenti, M., Mazza, M., & Keller, R. (2021). Autism spectrum disorder
and personality disorders: Comorbidity and differential diagnosis. World Journal of
Psychiatry, 11(12), 1366. https://doi.org/10.5498/wjp.v11.i12.1366

Romaszko, M. Z., Ochal, M. R., & Januszko-Giergielewicz, B. (2021). Possibilities of early

diagnosis of autism spectrum disorder, with a special attention to Asperger syndrome: A
systematic literature review. Polish Annals of Medicine, 28(1).
https://doi.org/10.29089/2020.20.00142

Smith, I. C., Edelstein, J. A., Cox, B. E., & White, S. W. (2018). Parental disclosure of asd
diagnosis to the child: A systematic review. Evidence-Based Practice in Child and
Adolescent Mental Health, 3(2), 98–105.
https://doi.org/10.1080/23794925.2018.1435319

*Sukiennik, R., Marchezan, J., & Scornavacca, F. (2022). Challenges on diagnoses and
assessments related to autism spectrum disorder in brazil: A systematic review.
Frontiers in Neurology, 12. https://doi.org/10.3389/fneur.2021.598073

Zampella, C. J., Wang, L. A. L., Haley, M., Hutchinson, A. G., & de Marchena, A. (2021). Motor
skill differences in autism spectrum disorder: A clinically focused review. Current
Psychiatry Reports, 23(10). https://doi.org/10.1007/s11920-021-01280-6

Exclusion reason: Search conducted before 2017 (n = 7)

Baghdadli, A., Russet, F., & Mottron, L. (2017). Measurement properties of screening and
diagnostic tools for autism spectrum adults of mean normal intelligence: A systematic
review. European Psychiatry, 44, 104–124.
https://doi.org/10.1016/j.eurpsy.2017.04.009

Bieleninik, L., Posserud, M.-B., Geretsegger, M., Thompson, G., Elefant, C., & Gold, C. (2017).
Tracing the temporal stability of autism spectrum diagnosis and severity as measured by
the autism diagnostic observation schedule: A systematic review and meta-analysis. Plos
One, 12(9), 0183160. https://doi.org/10.1371/journal.pone.0183160

Fusaroli, R., Lambrechts, A., Bang, D., Bowler, D. M., & Gaigg, S. B. (2017). “Is voice a marker for
autism spectrum disorder? a systematic review and meta-analysis.” Autism Research,
10(3), 384–407. https://doi.org/10.1002/aur.1678
Penner, M., Anagnostou, E., Andoni, L. Y., & Ungar, W. J. (2018). Systematic review of clinical
guidance documents for autism spectrum disorder diagnostic assessment in select
regions. Autism, 22(5), 517–527. https://doi.org/10.1177/1362361316685879

Randall, M., Egberts, K. J., Samtani, A., Scholten, R. J., Hooft, L., Livingstone, N., ... & Williams, K.
(2018). Diagnostic tests for autism spectrum disorder (ASD) in preschool
children. Cochrane Database of Systematic Reviews, 7.
https://doi.org/10.1002/14651858.CD009044.pub2

Singh, J. S., & Bunyak, G. (2019). Autism disparities: a systematic review and meta-ethnography
of qualitative research. Qualitative Health Research, 29(6), 796–808.
https://doi.org/10.1177/1049732318808245

Sutherland, R., Trembath, D., & Roberts, J. (2018). Telehealth and autism: a systematic search
and review of the literature. International Journal of Speech-Language Pathology, 20(3),
324–336. https://doi.org/10.1080/17549507.2018.1465123
 Update of the National Guideline for the Assessment and Diagnosis of Autism in
Australia
Appendix 4.6 Articles excluded during extraction with reasons
Exclusion reason: Not related to research question/practice (n = 2)
La Valle C, Johnston E, Tager-Flusberg H. A systematic review of the use of telehealth to
facilitate a diagnosis for children with developmental concerns. (2022). Research in
Developmental Disabilities, 127, 104269. https://doi.org/10.1016/j. ridd.2022.104269.
Vuijk R, Deen M, Sizoo B, Arntz A. Temperament, character, and personality disorders in adults
with autism spectrum disorder: a systematic literature review and meta-analysis. (2018).
Review Journal of Autism and Developmental Disorders, 5, 176-197.
https://doi.org.10.1007/s40489-018-0131-y]
Exclusion reason: Not systematic (n = 4)
Desideri L, Pérez-Fuster P, Herrera G. Information and communication technologies to support
early screening of autism spectrum disorder: A systematic review. (2021). Children, 8(2),
93. https://doi.org/10.3390/child ren8020093.
Marlow M, Servili C, Tomlinson M. A review of screening tools for the identification of autism
spectrum disorders and developmental delay in infants and young children:
recommendations for use in low- and middle- income countries. (2019). Autism
Research, 12, 17699. https://doi.org/ 10.1002/aur.2033
Stewart LA, Lee L-C. Screening for autism spectrum disorder in low and middle-income
countries: A systematic review. (2017). Autism, 21, 52739.
https://doi.org/10.1177/1362361316677025
Stavropoulos KK-M, Bolourian Y, Blacher J. (2022). A scoping review of telehealth diagnosis of
autism spectrum disorder. PLoS ONE, 17(2), e0263062.
https://doi.org/10.1371/journal.pone.0263062
 Update of the National Guideline for the Assessment and Diagnosis of Autism in
Australia

Appendix 4.7 Included Articles

 Included Articles
Boshoff, K., Gibbs, D., Phillips, R. L., Louise Wiles, L., & Porter, L. (2019). A meta‐synthesis of
how parents of children with autism describe their experience of advocating for their
children during the process of diagnosis. Health and Social Care in the Community, 27(0),
e143-e157. https://doi.org/10.1111/hsc.12691
Brown, M., Marsh, L., & McCann, E. (2021). Experiences of fathers regarding the diagnosis of
their child with autism spectrum disorder: A narrative review of the international
research. Journal of Clinical Nursing, 30, 2758–2768.
https://doi.org/10.1111/jocn.15781
Clarke, L & Fung, L. K. (2022). The impact of autism-related training programs on physician
knowledge, self-efficacy, and practice behavior: A systematic review. Autism, 1-15.
https://doi.org/10.1177/1362361322110201
Dorlack, T. P.,Orrin B. Myers, O. B., & Piyadasa W. Kodituwakku, P. W. (2018). A Comparative
Analysis of the ADOS-G and ADOS-2 Algorithms: Preliminary Findings. Journal of Autism
and Developmental Disorders, 48(0). 2078–2089. https://doi.org/10.1007/s10803-018-
3475-3
Ellison, K. S., Guidry, J., Picou, P., Adenuga, P., & Davis III, T. E. (2021). Telehealth and Autism
Prior to and in the Age of COVID‑19: A Systematic and Critical Review of the Last
Decade. Clinical Child and Family Psychology Review, 24, 599–630.
https://doi.org/10.1007/s10567-021-00358-0
Guan, X., Zwaigenbaum, L., & Sonnenberg, L. K. (2022). Building Capacity for Community
Pediatric Autism Diagnosis: A Systemic Review of Physician Training Programs. Journal of
Developmental and Behavioral Pediatrics, 43(1), 44-54.
https://doi.org/10.1097/dbp.0000000000001042
Howes, A. E., Burns, M. E., & Surtees, A. D. R. (2021). Barriers, Facilitators, and Experiences of
the Autism Assessment Process: A Systematic Review of Qualitative Research with
Health Professionals. Professional Psychology: Research and Practice, 52(5),
https://doi.org/10.1037/pro0000413
Lebersfeld, J. B., Swanson, M., Clesi, C. D., & O'Kelley, S. E. (2021). Systematic Review and Meta-
Analysis of the Clinical Utility of the ADOS-2 and the ADI-R in Diagnosing Autism
Spectrum Disorders in Children. Journal of Autism and Developmental Disorders, 51(11),
4101-4114. https://doi.org/10.1007/s10803-020-04839-z
Legg, H & Tickle, A. (2019). UK parents' experiences of their child receiving a diagnosis of autism
spectrum disorder A systematic review of the qualitative evidence. Autism, 23(8), 1897-
1910. https://doi.org/10.1177/1362361319841488
Lockwood Estrin, G., Milner, V., Spain, D., Happé, F., & Emma Colvert, E. (2021). Barriers to
Autism Spectrum Disorder Diagnosis for Young Women and Girls: a Systematic Review.
Review Journal of Autism and Developmental Disorders, 8(0), 454–470.
https://doi.org/10.1007/s40489-020-00225-8
Loubersac, J., Michelon, C., Ferrando, L., Picot, L. M, & Baghdadli, A. (2021). Predictors of an
earlier diagnosis of autism spectrum disorder in children and adolescents: a systematic
review (1987–2017). European Child & Adolescent Psychiatry.
https://doi.org/10.1007/s00787-021-01792-9
Meimei, L & Zenghui, M. (2022). A systematic review of telehealth screening, assessment, and
diagnosis of autism spectrum disorder. Child and Adolescent Psychiatry and Mental
Health, 16(0), 1-15. https://doi.org/10.1186/s13034-022-00514-6
Rivera-Figueroa, K., Marfo, N. Y. A., & Eigsti, I. M. (2022). Parental Perceptions of Autism
Spectrum Disorder in Latinx and Black Sociocultural Contexts: A Systematic Review.
American Journal on Intellectual and Developmental Disabilities, 127(1), 42-63.
https://doi.org/10.1352/1944-7558-127.1.42
Sainsbury, W. J., Carrasco, K., Whitehouse, A. J. O., McNeil, L., & Waddington, H. (2022). Age
of Diagnosis for Co-occurring Autism and Attention Deficit Hyperactivity Disorder During
Childhood and Adolescence: a Systematic Review. Review Journal of Autism and
Developmental Disorders. https://doi.org/10.1007/s40489-022-00309-7
Valentine, A. Z., Sophie S Hall, S. S., Emma Young, E., Brown, B. J., Groom. M. J., PhD; Chris
Hollis, C., & Charlotte L Hall, C. L. (2021). Implementation of Telehealth Services to
Assess, Monitor, and Treat Neurodevelopmental Disorders: Systematic Review. Journal
of Medical Internet Research, 23(1), e22619. https://doi.org/10.2196/22619
van ’t Hof, M., Tisseur, C., van Berckelear-Onnes, I., van Nieuwenhuyzen, A., M., Daniels, A. M.,
Deen, M., Hans W Hoek, H. W., & Ester, W. A. (2021). Age at autism spectrum disorder
diagnosis: A systematic review and meta-analysis from 2012 to 2019. Autism, 25(4), 862-
873. https://doi.org/10.1177/1362361320971107
Update of the National Guideline for the Assessment and Diagnosis of Autism in Australia

Appendix 4.8 Characteristics of included systematic reviews

Author (year) Characteristics of Systematic Reviews Characteristics of Included Studies
Boshoff et al. Type: Narrative synthesis Participants: Parents and family members of children with an
(2019) Focus: Experience autism diagnosis aged 2–14years (n = 1178)
Objectives: ‘to consolidate in-depth qualitative data from Concept/Context: ‘Experience of parents of children with autism of
parents of their experience of advocating for their child with advocating for their children during the process of diagnosis.’
autism, during the process of diagnosis.’ Design(s): Grounded theory, Descriptive qualitative,
Number of included studies: 22 Phenomenology, Hermeneutic phenomenology, Qualitative design,
Search limit (years): Inception - 2017 Ethnography, Narrative, Narrative and observation used in case
Quality (systematic review): Low (7/10) study, Collective case study, Questionnaire with themes
Sources of funding: Not specified Locations of included studies: Asia; Europe; North America
Conflict of interest: Not specified Quality appraisal tool (included studies): Critical Appraisal Skills
Programme tool
Quality (included studies): Low-quality/high risk of bias and above
Brown et al. Type: Narrative synthesis Participants: Fathers of children with autism aged 20 months - 36
(2021) Focus: Experience years old (n = 298).
Objectives: ‘to highlight the views and experiences of fathers Concept/Context: ‘The views and experiences of fathers in relation
regarding their child's autism spectrum disorder (ASD) diagnosis to their child's ASD diagnosis and [sic] their care and support needs’.
and to identify their care and support needs.’ Designs(s): Qualitative (semi-structured interviews), Qualitative (in-
Number of included studies: 9 depth interviews), Mixed methods (survey and interviews),
Search limit (years): 2000 - 2020 Quantitative (survey)
Quality (systematic review): High (8/10) Locations of included studies: Africa; Asia; Australia; Europe; North
Sources of funding: Not funded America
Conflict of interest: No conflict(s) Quality appraisal tool (included studies): Critical Appraisal Skills
Process tool
Quality (included studies): High-quality/low risk of bias
Clarke & Fung Type: Narrative synthesis Participants: General pediatricians, family medicine physicians,
(2022) Focus: Process nurse practitioners, family practitioners, pediatricians, general
Objectives: ‘to examine the impact that autism-specific training practitioners, family practice physicians, physicians and staff at
programs have on improving physician knowledge, self-efficacy, pediatric and family medicine practices, child psychiatrists, and
and practice behavior related to caring for autistic patients...and psychologists, third-year medical students, residents in pediatrics,
identify gaps in the literature that should be addressed in future medicine-pediatrics, and neurology, pediatric or medicine-pediatric
studies to provide a stronger foundation for the efficacy of residents, internal medicine-pediatrics physicians, physician
these specialized training programs.’ assistants, psychiatrists, developmental and behavioral
Number of included studies: 17
 Search limit (years): Not specified - 2021 pediatricians, pediatric neurologists, pediatric nurse practitioners,
Quality (systematic review): Low (7/10) medical students, physicians, community pediatricians (n = 917)
Sources of funding: Not funded Concept/Context: ‘The impact of specialized training programs on
Conflict of interest: Not specified physicians’ knowledge of autism and their self-efficacy and practice
behavior related to caring for autistic patients’.
Designs(s): Single group pre-test and post-test, Single group post-
test, Randomized control trials
Locations of included studies: Not stated
Quality appraisal tool (included studies): Medical Education
Research Study Quality Instrument (MERSQI)
Quality (included studies): Low-quality/high risk of bias and above
Dorlack et al. Type: Meta-analysis with Narrative synthesis Participants: Children referred for assessment and evaluation who
(2018) Focus: Process met an identifying score to qualify as either “autism/ASD” or “non-
Objectives: ‘to analyze the sensitivity and specificity of the autism/ASD” by the ADOS-G and ADOS-2 diagnostic algorithm cutoff
ADOS-G and ADOS-2 algorithms, Modules 1–3...and report scores (number of participants specified).
preliminary findings on the relative merits of the two versions, Concept/Context: ‘Diagnostic accuracy of standardised diagnostic
with a view of informing the design of future comparative assessments (i.e., sensitivity and specificity of the ADOS-G and
studies of the ADOS.’ ADOS-2 algorithms, Modules 1–3).’
Number of included studies: 6 Designs(s): Not specified
Search limit (years): 2000 - 2017 Locations of included studies: Not stated
Quality (systematic review): Low (7/11) Quality appraisal tool (included studies): Quality Assessment of
Sources of funding: Study funded (National Center for Diagnostic Accuracy Studies-2 (QUADAS-2) tool
Advancing Translational Sciences of the National Institutes of Quality (included studies): Low-quality/high risk of bias and above
Health [UL1TR001449]).
Conflict of interest: No conflict(s)
Ellison et al. Type: Narrative synthesis Participants: Children diagnosed with autism aged 29 months to 12
(2021) Focus: Process years (n = 104) and their parents (n = 41), teachers (n = =9) or care
Objectives: ‘to examine the evidence base, methodology, and staff (n = 3), children with developmental delays (n = 10), typically
outcomes of studies that have used telehealth for assessment developing children (n = 6)
and/or intervention with children and adolescents with ASD as Concept/Context: ‘The evidence base, methodology, and outcomes
well as their families over the last decade. Further, the goal is to of studies that have used telehealth for assessment and/or
highlight the advances in telehealth and its use with this special intervention with children and adolescents with ASD as well as their
population.’ families.’
Number of included studies: 55 Designs(s): Method comparison design, Random assignment to
Search limit (years): 2010 - 2021 either in-person or interactive VC assessment, Multi-element
 Quality (systematic review): Low (5/10) design; Randomized assignment to either the TELE-STAT or TELE-
Sources of funding: Not specified ASD-PEDS groups, Teacher implementation comparisons,
Conflict of interest: No conflict(s) Participant comparisons, Multiple-baseline design across
participants with embedded multielement designs, Nonconcurrent
multiple-baseline design
Locations of included studies: Not stated
Quality appraisal tool (included studies): Scientific Merit Rating
Scales (SMRS)
Quality (included studies): Moderate quality/moderate risk of bias
and above
Guan et al. (2022) Type: Narrative synthesis Participants: Community-based primary care providers (general
Focus: Process pediatricians, speech-language pathologists, psychologists, family
Objectives: ‘to identify and summarise published studies that physician, nurse practitioner (n = 67; one included study did not
included ASD diagnostic training for primary care providers provide details) and pediatric patients assessed for a possible
(PCPs) and aims to guide future training and evaluation autism diagnosis (n = 279)
methods.’ Concept/Context: ‘ASD diagnostic training programs for primary
Number of included studies: 6 care providers [in community settings]’
Search limit (years): Inception - 2020 Designs(s): Nonrandomized trial study design, Pre-post study design
Quality (systematic review): High (9/10) Locations of included studies: Europe; North America
Sources of funding: Study funded (Resident Trainee Research Quality appraisal tool (included studies): National Institutes of
Grant by the Department of Pediatrics and Women and Health Quality Assessment Tool for Before-After (Pre-Post) Study
Children's Health Research Institute at the University of Alberta) Checklist (NIH Checklist) and the Cochrane risk assessment tool
Conflict of interest: No conflict(s) Quality (included studies): Low-quality/high risk of bias and above
Howes et al. Type: Narrative synthesis Participants: Health professionals who diagnose ASD, including
(2021) Focus: Experience clinical psychologists, pediatricians, educators, educational
Objectives: ‘to identify and summarise the literature on the psychologists, psychiatrists, speech and language therapists,
experiences and perceptions of diagnosing ASD for health specialist early years practitioners, general practice pediatricians,
professionals, and to support future health professionals by child and adolescent psychiatrists, child neurologists, disability
summarising the facilitators and barriers to diagnosing ASD’. physicians, nurses, specialist teachers, and other (n = 200).
Number of included studies: 7 Concept/Context: ‘The experiences and perceptions of health
Search limit (years): 1994 - 2019 professionals who diagnose ASD’.
Quality (systematic review): High (8/10) Designs(s): Qualitative interviews, Mixed methods
Sources of funding: Not specified Locations of included studies: Europe; North America
Conflict of interest: Not specified Quality appraisal tool (included studies): Critical Appraisal Skills
Programme tool
 Quality (included studies): High-quality/low risk of bias
Lebersfeld et al. Type: Meta-analysis with Narrative synthesis Participants: Children under 18 years referred for an initial
(2021) Focus: Process diagnostic evaluation in a clinical or research setting (n = 9060)
Objectives: ‘to determine the accuracy and clinical utility of the Concept/Context: ‘The efficacy of [the ADOS-2 and ADI-R] for initial
ADOS-2 and the ADI-R [for the purpose of an initial diagnostic diagnostic evaluation in a clinical versus research setting’.
evaluation in a clinical or research setting for children under 18 Designs(s): Prospective, Retrospective, Cross-sectional, and
years]’ Longitudinal study designs
Number of included studies: 22 Locations of included studies: Europe; North America
Search limit (years): 2007 – 2018 Quality appraisal tool (included studies): Quality Assessment of
Quality (systematic review): Low (5/11) Diagnostic Accuracy Studies-2 (QUADAS-2)
Sources of funding: Not specified Quality (included studies): Low-quality/high risk of bias and above
Conflict of interest: Not specified
Legg & Tickle Type: Narrative synthesis Participants: Parents whose child received a diagnosis of ASD or
(2019) Focus: Experience Asperger syndrome (AS) [before 18years of age] (n = 342)
Objectives: ‘to systematically identify, appraise, and synthesise Concept/Context: ‘The experience of parents whose child receives a
qualitative research concerning UK parents’ experiences of their diagnosis of autism spectrum disorder [in the UK]’.
child receiving a diagnosis of autism spectrum disorder’. Designs(s): Inductive thematic analysis, Discourse analysis, Long-
Number of included studies: 11 table approach, Interpretive phenomenological analysis, Thematic
Search limit (years): N/A - 2018 analysis, Thematic content analysis, Grounded theory, Content
Quality (systematic review): High (10/10) analysis, Modified form of constant thematic analysis incorporating
Sources of funding: Not funded elements of comparative method, Combination of structural and
Conflict of interest: Not specified thematic narrative analysis
Locations of included studies: Europe
Quality appraisal tool (included studies): Critical Appraisal Skills
Progamme tool
Quality (included studies): Low-quality/high risk of bias and above
Lockwood Estrin Type: Narrative synthesis Participants: 23, 760, including females with a diagnosis of ASD (n =
et al. (2021) Focus: Experience 3197), 92 parents/family members of girls/young women diagnosed
Objectives: ‘to identify key barriers to obtaining an ASD with ASD (n = 92), and professional providers (n = 3)
diagnosis in girls and young women under 21 years.’ Concept/Context: ‘the barriers to ASD diagnosis in girls and young
Number of included studies: 20 women (aged 21 or younger) from the perspectives of (a) autistic
Search limit (years): Inception - 2018 individuals, (b) their parents and family members, (c) teachers, and
Quality (systematic review): Low (7/10) (d) health professionals’.
Sources of funding: Study funded (Sir Henry Wellcome Designs(s): Qualitative - In-depth semi-structured interviews, Field
Postdoctoral fellowship [Wellcome Trust grant number: notes, observations, and artefacts, Focus group discussions
 204706/Z/16/Z] and an Economic and Social Research Council Quantitative - Secondary data analysis of a population-based study
Research Grant [ES/M011488/1]). of the prevalence of ASD, Retrospective secondary data analysis of a
Conflict of interest: No conflict(s) longitudinal cohort study, Population-based study, Survey,
Observational, cross-sectional study, Experimental, cross-sectional
study, Secondary data analysis from an online survey,
Observational, multiple centre cross-sectional study, Observational
study, clinical comparison of caregiver’s concerns, Longitudinal
cohort study, Secondary data analysis from UK database, Secondary
data analysis across multiple cross-sectional studies, Secondary data
analysis from an RCT
Locations of included studies: Australia; Europe; North America
Quality appraisal tool (included studies): Qualitative Critical
Appraisal Skills Programme (CASP) checklist, or an adapted CASP
checklist for quantitative research studies
Quality (included studies): Low-quality/high risk of bias and above
Loubersac et al. Type: Narrative synthesis Participants: Children with confirmed ASD diagnosed according to
(2021) Focus: Factor the ICD or DSM classifications (n = 97,719)
Objectives: ‘to identify clinical, social, and environmental Concept/Context: ‘the clinical, socioeconomic, and environmental
factors associated with the age at which the diagnosis of ASD is factors associated with the age at which a diagnosis of ASD is
confirmed in children.’ formally established in childhood according to the criteria of
Number of included studies: 50 international classifications.’
Search limit (years): N/A - 2019 Designs(s): Not specified
Quality (systematic review): Low (5/10) Locations of included studies: Africa; Asia; Australia; Europe; North
Sources of funding: Not funded America
Conflict of interest: No conflict(s) Quality appraisal tool (included studies): Newcastle Ottawa Scale
(NOS)
Quality (included studies): Low-quality/high risk of bias and above
Meimei & Type: Narrative synthesis Participants: Children/individuals with and without autism aged 2
Zenghui (2022) Focus: Process months to 42 years (autism: n = 10,689; without autism: n = 1,611)
Objectives: ‘to provide ASD screening and diagnosis application Concept/Context: ‘to provide ASD screening and diagnosis
options for use in daily practice by relevant healthcare application options for use in daily practice by relevant healthcare
practitioners and researchers to help diagnose various practitioners and researchers to help diagnose various conditions.’
conditions and suggest possible future research directions.’ Designs(s): Specific study designs not specified; states that all types
Number of included studies: 26 of empirical study designs were included
Search limit (years): 2000 - 2022
 Quality (systematic review): Low (2/10) Locations of included studies: Australia; Pacific; Europe; North
Sources of funding: Not funded America
Conflict of interest: No conflict(s) Quality appraisal tool (included studies): Scientific Merit Rating
Scale
Quality (included studies): Moderate-quality/moderate risk of bias
and above
Rivera-Figueroa Type: Narrative synthesis Participants: Latinx and Black American parents/caregivers of
et al. (2022) Focus: Experience children with ASD, community members, and healthcare providers
Objectives: ‘to present a systematic review of parental and (number of participants not specified)
community perceptions of ASD in Latinx and Black American Concept/Context: ‘Parental and community perceptions of ASD
communities, discuss the clinical implications of these within Latinx and Black American communities and key factors that
perceptions; and provide recommendations to facilitate better contribute to ASD-related health inequities in Latinx and Black
research and clinical practice, and to increase equitable access American communities in the United States.’
to care’. Designs(s): Cross-sectional, Descriptive, Mixed methods, Qualitative
Number of included studies: 50 Locations of included studies: North America
Search limit (years): 2005 - 2019 Quality appraisal tool (included studies): Let Evidence Guide Every
Quality (systematic review): High (8/10) New Decision (LEGEND) system
Sources of funding: Study funded (Portions funded by NIMH Quality (included studies): Low-quality/high risk of bias and above
R01MH112687-01A1, NSF 1144399, and by a UConn Provost’s
Research Award).
Conflict of interest: Not specified
Sainsbury et al. Type: Narrative synthesis Participants: Children with ASD, ADHD, or ASD+ADHD diagnoses (n
(2022) Focus: Process = 41,382), including 14,584 diagnosed with ASD only, 12,689
Objectives: ‘to elucidate whether there is a significant diagnosed with ADHD only, and 14,109 diagnosed with ASD+ADHD.
difference in the age of ASD diagnosis for children and Concept/Context: ‘The age at which children/adolescents were
adolescents with ASD only and co-occurring ASD+ADHD, diagnosed with both ASD and ADHD, compared to the age of
compare the age of ASD diagnosis for children and adolescents primary diagnosis of ASD or ADHD, and quantifiable factors which
with ASD only and co-occurring ASD+ADHD, and examine may contribute to differences in age of diagnosis.’
quantifiable factors which may contribute to differences in the Designs(s): Not specified
age of diagnosis between groups’. Locations of included studies: Asia; Europe; North America
Number of included studies: 12 Quality appraisal tool (included studies): Hoy et al.’s (2012)
Search limit (years): 2015 - 2020 guidelines.
Quality (systematic review): High (8/10) Quality (included studies): Moderate-quality /moderate risk of bias
Sources of funding: Study funded (Open Access funding enabled and above
and organized by CAUL and its Member Institutions, an internal
 research grant provided by The University of Victoria,
Wellington [225668], and an Investigator Grant National Health
and Medical Research Council [1173896]).
Conflict of interest: No conflict(s)
Valentine et al. Type: Narrative synthesis Participants: People with NDDs or parents, carers or health care
(2021) Focus: Process professionals who worked with people with NDDs (number of
Objectives: ‘to highlight how telehealth has been used with participants not specified)
clinical samples in the neurodevelopmental field, including Concept/Context: ‘The clinical/service effectiveness, economic
patients with neurodevelopmental disorders (NDDs), their impact, and user impact (i.e., feasibility/acceptability) of telehealth
families, and health care professionals and identify which to aid in assessment, diagnosis, monitoring, and treatment with
technologies show the greatest potential for implementation clinical samples within the neurodevelopmental field prior to the
into health services.’ COVID-19 pandemic’.
Number of included studies: 42 Designs(s): Not specified
Search limit (years): 2014 - 2019 Locations of included studies: Australia; Pacific; Europe; North
Quality (systematic review): High (8/10) America
Sources of funding: Study funded (National Institute for Health Quality appraisal tool (included studies): Oxford Centre for
Research Collaboration for Leadership in Applied Health Evidence-Based Medicine Levels of Evidence
Research and Care East Midlands). Quality (included studies): Low-quality/high risk of bias and above
Conflict of interest: No conflict(s)
van't Hof et al. Type: Meta-analysis with narrative synthesis Participants: Children, adolescents, and adults aged 0-85 years with
(2020) Focus: Process diagnosis of autism spectrum disorder, autistic disorder, Asperger's
Objectives: ‘to conduct a systematic review of age at ASD syndrome, PDD, or PDD-NOS (narrative review: n = 120,540; meta-
diagnosis from studies published between 2012 and 2019 and analysis: n = 66,966)
perform a meta-analysis of the age at ASD diagnosis reported in Concept/Context: ‘The age at ASD diagnosis from studies published
these studies to specify the current age at diagnosis.’ between 2012 and 2019, the current age at diagnosis (via meta-
Number of included studies: 20 analysis), and possible influencing factors on age at ASD diagnosis.’
Search limit (years): 2012 - 2019 Designs(s): Not specified
Quality (systematic review): Low (6/11) Locations of included studies: Africa; Asia; Australia; Pacific;
Sources of funding: Study funded (Sarr Expert Centre for Europe; South America/Caribbean; North America
Autism, Lucertis Child and Adolescent Psychiatry). Quality appraisal tool (included studies): ‘An RoB tool based on
Conflict of interest: No conflict(s) items from several standardized critical appraisal tools developed
by the Joanna Briggs Institute (2020)’
Quality (included studies): Low-quality/high risk of bias and above
Update of the National Guideline for the Assessment and Diagnosis of Autism in Australia

Appendix 4.9 Quality Appraisal

 8. Methods to combine
6. Independent critical

7. Minimised errors in

studies appropriate
resources adequate

recommendations
5. Quality appraisal
2. Inclusion criteria

11. Directive for the

1. Review question

9. Publication bias
3. Search strategy

assessed (meta-
data extraction

Overall quality
analyses only)

10. Policy and/or

4. Sources and
appropriate

appropriate

appropriate

appropriate
Total
appraisal

research
practice
stated
Boshoff et al. (2019) Yes Yes No No Yes Yes Yes Yes N/A No Yes 7/10 L
Brown et al. (2021) Yes Yes Yes No Yes Yes Yes Yes N/A No Yes 8/10 H
Clarke & Fung (2022) Yes Yes No No Yes Yes No Yes N/A Yes Yes 7/10 L
Dorlack et al. (2018) No Yes Yes No Yes Yes No Yes Yes No Yes 7/11 L
Ellison et al. (2021) Yes Yes No No No Yes No Yes N/A No Yes 5/10 L
Guan et al. (2022) Yes Yes Yes Yes Yes Yes No Yes N/A Yes Yes 9/10 H
Howes et al. (2021) Yes Yes Yes No Yes Yes No Yes N/A Yes Yes 8/10 H
Lebersfeld et al. (2021) No Yes Yes No Yes No Yes No No No Yes 5/11 L
Legg & Tickle (2019) Yes Yes Yes Yes Yes Yes Yes Yes N/A Yes Yes 10/10 H
Lockwood Estrin et al. (2021) Yes Yes No No Yes Yes Yes Yes N/A No Yes 7/10 L
Loubersac et al. (2021) Yes Yes No No No Yes No Yes N/A No Yes 5/10 L
Meimei & Zenghui (2022) No No No No Yes No No No N/A No Yes 2/10 L
Rivera-Figueroa et al. (2022) Yes Yes Yes Yes No Yes No Yes N/A Yes Yes 8/10 H
Sainsbury et al. (2022) Yes No No Yes Yes Yes Yes Yes N/A Yes Yes 8/10 H
Valentine et al. (2021) Yes Yes Yes No No Yes Yes Yes N/A Yes Yes 8/10 H
van't Hof et al. (2020) Yes Yes Yes No Yes No Yes No No No Yes 6/11 L
Note: L = Low Quality <80%; H = High Quality ≥80%
Update of the National Guideline for the Assessment and Diagnosis of Autism in Australia

Appendix 4.10 Quantitative summary of quote matrices.

 Number of SRs covering theme
Lockwood Estrin et al. (2021)
Rivera-Figueroa et al. (2022)

Meimei & Zenghui (2022)

Lebersfeld et al. (2021)
Loubersac et al. (2021)

Sainsbury et al. (2022)

Valentine et al. (2021)

Clarke & Fung (2022)

van't Hof et al. (2020)

Legg & Tickle (2019)
Dorlack et al. (2018)

Boshoff et al. (2019)

Ellison et al. (2021)

Howes et al. (2021)

Brown et al. (2021)

Guan et al. (2022)
Principles 0 4 8 7 0 1 3 32 40 3 0 3 20 35 2 10 13
Appropriate 0 0 0 0 0 0 0 1 3 2 0 0 0 1 0 0 4
Competent 0 0 1 0 0 0 3 3 4 0 0 0 2 5 0 4 7
Comprehensive 0 0 0 0 0 0 0 2 0 1 0 0 1 0 0 0 3
Coordinated 0 0 0 0 0 0 0 1 2 0 0 0 0 7 0 0 3
Culturally safe 0 0 4 0 0 0 0 0 2 0 0 0 0 1 0 1 4
Ethical 0 0 2 0 0 0 0 1 0 0 0 0 0 7 0 0 3
Evidence-based 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 1
Helpful 0 0 2 0 0 0 0 18 19 0 0 0 2 14 0 6 6
Holistic 0 0 0 1 0 0 0 2 1 0 0 0 16 1 0 0 5
Individual and
0 1 3 0 0 0 0 7 17 0 0 0 1 6 1 0 7
Family Centred
Neurodiversity
0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
affirming
Respecting
Australia’s First 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Nations Peoples
Strengths-focused 0 0 0 0 0 0 0 1 2 0 0 0 0 0 0 1 3
Timely and Accessible 0 3 1 6 0 0 0 5 16 0 0 3 2 7 1 1 10
Process of Assessment
14 5 3 16 7 6 10 17 11 6 72 8 54 40 5 8 16
and/or Diagnosis
Decision making 0 0 0 0 0 0 0 0 0 0 0 0 1 6 2 0 3
Info Collected - How 0 3 1 0 0 4 0 0 1 3 0 0 0 3 0 0 6
Info collected - What 0 0 1 0 0 0 0 0 1 1 0 0 5 3 0 0 5
Info Sharing 0 0 0 0 0 0 0 10 6 0 0 0 0 18 0 3 4
Knowledge and
14 0 3 14 7 0 10 0 2 6 72 8 54 10 3 5 13
Training
Outcomes 0 0 0 0 0 0 0 2 0 0 0 0 0 6 1 0 3
Setting 0 4 0 0 0 6 0 0 1 3 0 0 0 1 1 0 6
When 0 0 0 0 0 0 0 2 1 0 0 0 0 2 0 0 3
Who 0 1 0 0 0 3 0 4 0 0 0 0 0 6 3 0 5
Other 0 0 0 2 0 0 0 0 1 0 0 0 0 4 0 0 3
Quality and Safety 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Quality 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Safety 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0
Number of themes
2 7 11 6 2 6 4 16 18 8 2 4 11 21 9 9 24
coded to SR
Update of the National Guideline for the Assessment and Diagnosis of Autism in Australia

Appendix 4.11 Umbrella Review Evidence Quotes - Founding Principles

Principle Systematic review Evidence quotes
1. Client and family- Boshoff et al. Parents’ relationships with professionals were negatively affected by a perceived lack
centred (2019) of acknowledgement of their concerns.

Parents described feeling unheard with dismissal of their concerns, resulting in

distress, anger, humiliation, and frustration (Frye, 2016; Ryan & Salisbury, 2012).

At times, parents reported that the concerns they raised were deferred at more than
one visit, resulting in a delay in the eventual diagnosis.

Marginalisation, silencing of their concerns, and lack of support were reported, as

well as health professionals not acknowledging the importance of parents’ concerns
(Bultas & Pohlman, 2014).

Parents report hesitation by health professionals with parents feeling that their
concerns were not being taken seriously, resulting in losing valuable time for early
intervention. The process of negotiating knowledge was considered
to be a continued struggle to advocate for their child’s needs (Carlsson et al, 2016).
Legg & Tickle, Parents mostly reported positive interactions with assessing clinicians but remained
(2019) aware, and in some respects cautious, of clinicians’ power.

Parents seeking support have a need to be taken seriously by professionals when

raising concerns about their children. This point offers professionals the first
opportunity to build a positive relationship with parents.

Good communication from professionals towards both parents and children

promoted good relationships between parents and professionals. Such relationships
are likely to have been containing for parents who have concerns about their children
and promote positive engagement in the assessment process.
 Parents are likely to be more satisfied when assessments include more time building
relationships between the professional and the child and when information is
provided to the parents, including through observation of assessments.

Fathers may have additional or alternative support needs to mothers following

diagnosis. It is possible this in part arises from their sense of being excluded earlier in
the process and that more inclusive relationships with professionals could promote
later emotional adjustment.
Lockwood Estrin et Parents also expressed frustration, knowing their daughter was developing atypically,
al. (2020) yet not receiving validation from medical professionals about their concerns.
Rivera-Figueroa et Parents report feeling discomfort in sharing concerns with healthcare providers and
al. (2022) community members, fearing that their children will be judged or shunned and that
their parenting skills will be questioned.
2. Strengths-focused Boshoff et al. Parents also described that the methods by which health professionals assessed their
(2019) child were compromised. Assessments were typically conducted in environments
unfamiliar to the child, which impacted on the opportunity to observe the child’s full
potential (Carlsson, Miniscalco, Kadescjo, & Laakso, 2016).

Parents experienced the use of overt medical language and an over‐emphasis on

negative outcomes when communicating with professionals.
Brown et al. (2021) This was further compounded by a lack of accessible information about ASD supports
available and the insensitive way some healthcare professionals disclosed the
diagnosis, with an overemphasis on the negative aspects of the condition (Burrell et
al., 2017; Potter, 2017).
Legg & Tickle Delivery of diagnosis was criticised for being too brief with a lack of sensitivity and a
(2019) focus on negative aspects.
3. Holistic Boshoff et al. Parents recognised that the characteristics of autism contributed to the issues they
(2019) faced in obtaining an appropriate diagnosis and support. Parents stated: “Because he
looks like a normal child, people don’t see the autism and don’t understand”
(Midence, 1999, p. 280) and “It was a battle getting anyone to understand our
problems and believe that she was something other than naughty.” (Tissot, 2011, p.
 7). Parents described this process as trying to make the invisible characteristics of
their child visible (Hoogsteen, 2013).
Howes et al. (2021) It was noted by some professionals that there was a lack of family support available,
although, some services offered “whole family support needs” but this was not
consistent across all the services discussed within Crane et al. (2018, p. 3768) study.
Legg & Tickle Some fathers had not felt sufficiently included in the diagnostic process.
(2019)
Lockwood Estrin et Arguably, this could be framed as females diagnosed with ASD needing additional
al. (2020) behavioural problems to improve their chances of receiving a diagnosis.

It would seem that social difficulties became more pronounced in girls over time, or
that compensatory mechanisms such as camouflaging are less successful, against the
higher social demands of teenagers.

The study also included the parent-completed Social Communication Questionnaire

(SCQ), on which current communication skills were reported to be significantly better
for ASD boys than girls. This again indicates greater problems for diagnosed girls and
the possibility of girls needing more ASD traits than boys to gain an ASD diagnosis.

Salomone et al. (2016) found that for verbally able individuals (i.e. those with phrase
speech) in a population-based sample, girls had a significantly higher age of diagnosis
than boys. This gender difference was not seen for non-verbal or minimally verbal
children. These results indicate that verbally able girls may be waiting longer for a
diagnosis, thereby supporting Dworzynski et al.’s (2012) suggestion that additional
language (or other) difficulties are often necessary for girls to receive an ASD
diagnosis in contrast to boys.

Studies indicated that males show more RRBIs than females (Duvekot et al. 2017;
Tillmann et al. 2018), and that RRBIs are more predictive of an ASD diagnosis in males
compared to females.
The number of stereotyped behaviours in boys significantly decreased between five
and 10 years of age, whereas it remained at a consistent level across these ages in
girls with ASD.

Tillmann et al. (2018) found that girls with an ASD diagnosis exhibited fewer RRBIs
than boys, however non-verbal intellectual functioning accounted for and attenuated
these differences.

Boys who had an additional diagnosis were diagnosed significantly later than boys
who did not.

When observing social interactions from a distance, girls with ASD behaved like
neurotypical girls, i.e.’ spending a significant amount of time talking and weaving in
and out of groups; yet, it was only upon closer inspection of the quality of interaction
with peers that social challenges were perceived. By contrast, it was easier to identify
social challenges in boys with ASD at a distance. The authors argued that using
camouflaging techniques to mask social difficulties makes girls with ASD more
vulnerable and less likely than boys to be identified within a school setting.

Girls with an additional diagnosis were diagnosed later than girls who did not have an
additional diagnosis. It has also been suggested that cognitive impairment increases
the likelihood of having a documented ASD diagnosis for boys, but not for girls. Girls
with an IQ of 70 or less were less likely than boys with an IQ of 70 or less to have a
documented ASD diagnosis. This may suggest that once a cognitive impairment had
been identified in a female, it is less likely that an ASD assessment will take place.

Another paper using in-depth interviews, this time with parents, adolescent autistic
daughters, and siblings, suggested that ASD females are less likely to be identified
until the social demands they experience exceed their compensatory strategies.
 Mothers interviewed in one further paper, by Cridland et al. (2014), reported
negative consequences from their daughters imitating social behaviours during
assessment, and clinicians therefore being unable to identify their autistic behaviours.

Parental reports of RRBI symptoms were significantly less predictive of an ASD

diagnosis for females than for males, indicating that even with high scores in this
domain, there was less of a link to diagnosis for females.

Boys were more likely than girls to have a diagnosis of ASD even when both sexes had
documented ASD symptoms in educational and clinical records. They concluded that
this may result from an ‘interpreting bias’, where the observed experiences differ
from the expected behaviours dependent on sex bias. They highlighted that clinicians
evaluating girls, compared to boys, with a complex developmental profile may be
more likely to exclude a classification of ASD if other conditions are present, due to
this bias.
4. Helpful Boshoff et al. Our findings highlight the intense emotional journey for parents during identification
(2019) of their initial concerns and the formal process of diagnosis, and their perceptions of
not being supported by others on this journey.

Marginalisation, silencing of their concerns, and lack of support were reported, as

well as health professionals not acknowledging the importance of parents’ concerns.
Some parents described the formal process of diagnosis as a struggle, initiating a
pattern of persistent behaviour by parents and a sense of distrust with medical
professionals.

Although parents described feeling empowered at the end point of this process, they
also described feeling alone. Despite obtaining the knowledge they needed, they still
needed to process the accompanying emotions and resulting decisions.
Brown et al. (2021) Some fathers described healthcare professionals not discussing the diagnosis and
prognosis with them, with a need to provide information in language they could
understand (Manor-Binyamini, 2019).
Howes et al. (2021) Multidisciplinary teams were thought to support parents’ experience of the
diagnostic process, as they allowed parents “time to talk” and gave clarity about the
diagnostic process.

The professionals from Rogers et al. (2016) wanted to offer long-term support to
people with autism, but acknowledged that this is not possible for many services and
that in-service support was also lacking for people who had received a diagnosis.
Legg & Tickle Professionals were represented as withholding information and scrutinising parents
(2019) and child as well as providing help, guidance and support.

Parents admired the professionals’ expertise and were grateful for the service
received.

Diagnostic process was hard to understand, and parents did not understand roles of
professionals.

Parents were unaware of potential support available following diagnosis.

Frequent criticisms were lack of support during and after assessment.

Parents wanted a quicker, easier process with more coherent structure and content.

Parents suggested information leaflets provided at the time of diagnosis could be

valuable.

Parents suggested they would like more information about the range of intervention
and educational programmes available and local support groups.

Delivery of diagnosis was criticised for being too brief with a lack of sensitivity and a
focus on negative aspects.
 Lack of adequate information and support at the time and following diagnosis was
highlighted.

Some parents reported feeling abandoned by services after the diagnosis was given,
leading to disappointment and frustration: Following my son’s diagnosis, I received a
leaflet and that is all. Any help and support I have subsequently received, I have
sought out and paid for myself … (Potter, 2017, p. 101)
Rivera-Figueroa et Parents with limited English-proficiency are more likely to endorse distrust in the HCP
al. (2022) as a barrier to service use (Zuckerman et al., 2017); to report receiving conflicting
information that is not explained clearly (Stahmer et al., 2019); and to describe
feeling discriminated against by professionals for not speaking English (Burke et al.,
2019).
5. Evidence-based Ellison et al. (2021) All of the assessment studies included in this review demonstrate the feasibility of
using telehealth to accurately assess not only for diagnostic purposes, but to also
conduct other forms of assessments with children with ASD.
6. Culturally safe Boshoff et al. Parents from a Latino background described the specific issues they faced as a result
(2019) of communication difficulties (Blanche et al., 2015). In their experience, service
providers did not emphasise the need for a diagnosis and access to services, which
they perceived may have been due to language barriers.

Parents from different cultural backgrounds reported communication (Luong et al.,

2009) and interaction difficulties (Jegatheesan et al., 2010), perceived to significantly
impact on the relationship between parents and provider
Brown et al. (2021) An awareness of ASD from a cultural perspective is required, with the need for
further research reflecting the range of experiences and essential cultural
perspective.
Howes et al. (2021) Language or cultural differences were reported to increase the difficulty of
diagnosing, such as needing a translator if there was a language barrier.
Rivera-Figueroa et Latinx and Black American parents are often met with providers who suggest a ‘‘wait
al. (2022) and see’’ approach and normalize their behavioral concerns; Spanish-speaking and
 Black American caregivers often understand this to be a reaction to their race or
culture and feel invalidated.

Racial and ethnic disparities are exacerbated by a lack of culturally competent

healthcare.
7. Respecting Nil Nil
Australia’s First
Nations Peoples.
8. Neurodiversity Nil Nil
affirming
9. Competent Boshoff et al. “When I first presented with my children, I had to tell them what to do and that was
(2019) the frightening part…could not tell me what to do with them...We lost tremendous
amount of time.”
Brown et al. (2021) It was reported that some health professionals lacked detailed knowledge about ASD
and the implications arising from the condition, thereby provoking emotions including
denial, confusion, shame and disbelief in some fathers.

Fathers also detailed how they struggled with the limited knowledge about and
implications of an ASD diagnosis and prognosis by some healthcare professionals
(Manor-Binyamini, 2019; Potter, 2017).
Clark & Fung (2022) The results reported by these studies suggest that by completing specialized training
programs related to autism, physicians were more knowledgeable on topics related
to the condition, more confident in their ability to provide care to autistic individuals,
and more likely to screen their patients for autism spectrum disorder.

Studies measuring self-efficacy found significant improvements in the outcome

measure following the completion of a specialized autism training program. For
example, one study found that physicians became more comfortable with identifying
the symptoms of ASD, making appropriate diagnoses and referrals, and providing care
to autistic children.
 Another study found that levels of self-efficacy remained increased six months
following the completion of a training program (van ‘t Hof et al., 2021), suggesting
that these educational programs are able to have a lasting impact on physicians’
confidence in their ability to provide care to autistic individuals.
Howes et al. (2021) A perceived lack of knowledge of how a person with autism presents was suggested
to cause a delay in autistic traits being noticed.

A lack of facts on ASD meant that some professionals felt they could not convey clear
messages to parents about the diagnosis. Penner et al. (2017) described that
professionals experienced diagnosis of both very young children and older children to
be more challenging, and that girls were felt to be more difficult to diagnose, due to
the differences in their presentation.
Legg & Tickle, Highlighted need for early diagnosis and better recognition of developmental
(2019) problems by health professionals.
Lockwood Estrin et Reports of healthcare professionals being reluctant to diagnose a female as autistic
al. (2020) and a lack of awareness of ASD in females due to a perceived higher incidence of ASD
in males.
Mademtzi et al. (2018) reported a parent feeling the need to exaggerate their
daughter’s impairments to gain a diagnosis; ‘I felt that I needed to make my daughter
look more impaired than she actually was, in order to get diagnosis and needed
services’.
10. Timely and Boshoff et al. Positive relationships with professionals were reported by parents who experienced a
Accessible (2019) timely diagnosis.

The need to take action was reported as more challenging for parents from
socioeconomic disadvantage or with cultural backgrounds different to that of the
professionals (Luong et al., 2009), as well as for those living in rural areas (Divan et al.,
2012).
 For rural families, complications included access to services, limited local expertise in
autism, needing to attend multiple consultations, and not receiving satisfactory
answers (Divan et al., 2012).
Parents described the time of waiting as very difficult as they were overwhelmed with
worry and concern for their child.

“…It just seems to take an awfully long time to diagnose and its valuable time early
on. A lot of time is wasted”
Guan et al. (2022) Two studies evaluated the change in wait time before and after implementing the
training program. These 2 studies compared the wait time to see an ASD specialist
versus the wait time to seeing a trained PCP.

Another study evaluated the change in time to diagnosis by measuring the number of
days from receipt of the parent-completed intake package to the date the final
diagnostic International Classification of Diseases code was entered.

All 3 studies reported the wait time to see a trained PCP was approximately 50% the
length of the wait time to see the traditional assessment team.
Howes et al. (2021) Some professionals discussed how the appointment time slots were not “adequate to
assess an autistic spectrum,” which was a recurrent perspective in professionals who
diagnosed other conditions in their practice.

Additionally, the time taken to diagnose was further scrutinized under the context of
services lacking the capacity to meet the demand, such that people are referred into
services but then wait a long time to be assessed and receive a diagnosis.

The time taken to be seen by other professionals, for participants who did not make
the diagnosis alone, was discussed as a barrier and professionals stated that this
impacted their ability to diagnose early.
 When faced with long referral times, some professionals chose to diagnose
themselves, rather than refer to a specialist (Penner et al., 2017). They explained that
getting support for people with autism as quickly as possible was a key priority.
Legg & Tickle While some parents were satisfied with timing of referral or assessment, others
(2019) found the process overly long and this had an emotional impact on them.

Time delays in assessment likely contributed to ongoing concerns and confusion and
further added to parents’ emotional difficulties.
Lockwood Estrin et Families experienced difficulty obtaining early diagnosis and problems having to
al. (2020) justify requests for services.

Strict diagnostic criteria also led to delayed diagnosis for females, with one parent
saying their daughter was declined diagnosis because ‘she’s two points above the
cutoff score’.
Loubersac et al. The diagnosis of ASD was, on average, earlier in areas with a higher median income.
(2021)
A significant 15-month age difference at diagnosis was reported by Thomas et al. [33]
between children who live in a zone with a high median income (> $90,000) and those
living in a zone with a lower median income (< $30,000). Those children living in a
high median income area also received more assessments, which may have
contributed to their earlier diagnosis.

African American children were diagnosed approximately 1.4 years later than
Caucasian children, with the difference being identical after adjusting for gender and
socioeconomic status.

Living in an “urbanized” area to be associated with a lower age at diagnosis of ASD.

Children residing in rural or semi-urban areas were mostly diagnosed later, after the
age of seven years (85%).
Sainsbury et al. Hatakenaka et al. (2016) found that the ASD + ADHD group waited 5 months longer
(2022) than the ASD only group for a diagnosis of ASD after the first visit, and the ADHD only
 group waited 8 months longer than the ASD group for a diagnosis (no statistical
analysis performed).

Stevens et al. (2016) found that the ASD + ADHD group waited 1.3 years longer than
the ASD only group for a diagnosis after first seeking medical assistance.
Valentine et al. Investigated referrals before and after the introduction of a telehealth service. They
(2021) found that implementing a diagnostic consultation service for ASD, in partnership
with an early intervention service, increased referrals for diagnostic evaluation and
the likelihood of families attending appointments.

Families from rural areas reported geographical and time barriers to accessing
traditional healthcare.

These barriers were reduced with remote diagnoses, leading to high levels of
satisfaction.
11. Coordinated Nil Nil
Update of the National Guideline for the Assessment and Diagnosis of Autism in Australia

Appendix 4.12 Umbrella Review Evidence Quotes – Process of Assessment and/or Diagnosis
Research question
When – Evidence is Legg & Tickle Highlighted need for early diagnosis and better recognition of developmental
presented in relation (2019) problems by health professionals.
to when should this
be considered? Information would support both professionals and parents to recognise differences in
language, communication and behaviour as possible indicators of autism as early as
possible.
Boshoff et al. Parents described occasions where their concerns were dismissed or ignored by
(2019) paediatricians, resulting in parents pressuring their pediatricians into referrals and
further assessments until they obtained a diagnosis. (Stoner et al., 2005). Parents’
persistence was rewarded by obtaining a diagnosis.
Howes et al. (2021) When faced with long referral times, some professionals chose to diagnose
themselves, rather than refer to a specialist (Penner et al., 2017). They explained that
getting support for people with autism as quickly as possible was a key priority.

Some professionals also used a “wait and see” approach toward diagnosis, due to the
worry that putting a family through the diagnostic process and the outcome not being
ASD is “not a wonderful thing to go through”.
Who – Evidence is Valentine et al. Families could be coached to complete ASD assessment activities with young children
presented in relation (2021) via videoconferencing and clinicians could make accurate diagnoses remotely.
to who should be
involved?
Ellison et al. (2021) Video conferencing was utilized to coach parents in implementing modified Autism
Diagnostic Observation Schedule (Lord et al., 2002)-Module 1 activities and presses
with their children compared to an in-person autism assessment utilizing these same
presses. No difference between diagnostic consistency was found between groups;
inter-rater agreement was not significantly different on the ADI-R and only one
significant difference for an item on the ADOS was found. Further, high parent
satisfaction was reported for both conditions.
 After radonmized group assignment, remote assessors randomly provided prompts to
parents using an adaptation of the Screening Tool for Autism in Toddlers and Young
Children (Stone et al., 2000) via VC or used the TELE-ASD-PEDS to guide parents to
lead specific social tasks with their children (Corona et al., 2021). Both of these
telehealth administrations were used to establish diagnostic accuracy; across the
sample, diagnostic accuracy was 86–77% of parents reported that they would prefer
both to play and observe the child during the remote assessment instead of just
playing with the child or just observing (Corona et al., 2021).

Remote real-time coaching was effective in having parents administer the functional
analysis and was successful with identifying the social function of the behaviors
consistently (Wacker et al., 2013). Results were comparable to previous functional
analysis studies where theses assessments were conducted in-home with parents but
the telehealth administration was a more cost-effective strategy
Legg & Tickle Diagnostic process was hard to understand, and parents did not understand roles of
(2019) professionals.

Some fathers had not felt sufficiently included in the diagnostic process.

Fathers felt excluded.

Fathers may have additional or alternative support needs to mothers following

diagnosis. It is possible this in part arises from their sense of being excluded earlier in
the process and that more inclusive relationships with professionals could promote
later emotional adjustment.
Howes et al. (2021) Professionals reported difficulties with consistency of diagnostic categorization, and
that the different sources of expertise on ASD were difficult to integrate into one
uniformed view.
 The benefits of multidisciplinary teams were noted. Multidisciplinary teams helped
compensate for the clinical setting of a formal diagnostic assessment, by allowing
observations to take place in a variety of environments.

Multidisciplinary teams were thought to support parents’ experience of the

diagnostic process, as they allowed parents “time to talk” and gave clarity about the
diagnostic process.

Parental understanding was understood to impact assessment processes. Participants

in Finke et al. (2010) acknowledged the importance of listening to parents as their
awareness of their child’s behaviors could be important in heightening the
professional’s “concern” that a diagnosis should be explored.

When faced with long referral times, some professionals chose to diagnose
themselves, rather than refer to a specialist (Penner et al., 2017). They explained that
getting support for people with autism as quickly as possible was a key priority.

Professionals in the Finke et al. (2010) study indicated a preference of which

specialists they would refer to, but a lack of these specialists meant this was not
always possible.
Guan et al. (2022) A small number of patients were included in studies that reported accuracy (n 5 14–
38). Diagnostic agreement between the trained providers and the expert teams
ranged between 74% and 100%. Notably, each of these studies reported absolute
agreement, without adjustment for chance agreement; the rates of ASD diagnosis by
the expert teams ranged from 41% to 78%.

PCPs reported their impression as to whether the child had ASD and stated the
specific DSM IV diagnostic subtype. Full agreement between the trained PCP and the
expert teams was 92% for the presence/absence of ASD and 87% for specific
subtypes.
 There were no significant differences in respect to parents’ perception of shared
decision making or family-centered care between the traditional model and the
trained PCP model.
Settings – Evidence is Valentine et al. Families could be coached to complete ASD assessment activities with young children
provided in relation (2021) via videoconferencing and clinicians could make accurate diagnoses remotely.
to in what settings
should it occur? Juarez et al [21] reported on 2 studies, of which 1 compared a telediagnosis to a face-
to-face assessment. This study demonstrated that, compared to gold-standard tools,
remote ASD diagnostic consultations resulted in clinicians correctly diagnosing 78.9%
(15/19) of children. No children were inaccurately diagnosed with ASD.

Following referral, 56 (89%) of the 63 families chose to receive further appointments

via telehealth services rather than face-to-face services.

These barriers were reduced with remote diagnoses, leading to high levels of
satisfaction.
Ellison et al. (2021) Findings, although still emerging, encouragingly suggested that services via telehealth
were equivalent or better to services face-to-face. Results support the benefits to
using telehealth with individuals with ASD.

Video conferencing was utilized to coach parents in implementing modified Autism

Diagnostic Observation Schedule (Lord et al., 2002)-Module 1 activities and presses
with their children compared to an in-person autism assessment utilizing these same
presses. No difference between diagnostic consistency was found between groups;
inter-rater agreement was not significantly different on the ADI-R and only one
significant difference for an item on the ADOS was found. Further, high parent
satisfaction was reported for both conditions.

After radonmized group assignment, remote assessors randomly provided prompts to

parents using an adaptation of the Screening Tool for Autism in Toddlers and Young
Children (Stone et al., 2000) via VC or used the TELE-ASD-PEDS to guide parents to
 lead specific social tasks with their children (Corona et al., 2021). Both of these
telehealth administrations were used to establish diagnostic accuracy; across the
sample, diagnostic accuracy was 86–77% of parents reported that they would prefer
both to play and observe the child during the remote assessment instead of just
playing with the child or just observing (Corona et al., 2021).

Based on these two studies, it does appear that well-established diagnostic measures
of ASD (i.e., ADOS and ADI-R), as well as other measures of ASD symptomology, can
be used via telehealth successfully as accurate alternatives for identifying children
with ASD rather than solely relying on in-person assessments.

Remote real-time coaching was effective in having parents administer the functional
analysis and was successful with identifying the social function of the behaviors
consistently (Wacker et al., 2013). Results were comparable to previous functional
analysis studies where theses assessments were conducted in-home with parents but
the telehealth administration was a more cost-effective strategy.

All of the assessment studies included in this review demonstrate the feasibility of
using telehealth to accurately assess not only for diagnostic purposes, but to also
conduct other forms of assessments with children with ASD.
Boshoff et al. Parents also described that the methods by which health professionals assessed their
(2019) child were compromised. Assessments were typically conducted in environments
unfamiliar to the child, which impacted on the opportunity to observe the child’s full
potential (Carlsson, Miniscalco, Kadescjo, & Laakso, 2016). Other parents also
reported that they did not feel that the communication style used with their child was
optimal. One parent said “Maybe they are good at it, but I don’t always agree with
what they say, that’s what it feels like … I see him in so many other situations than
they do, so it doesn’t feel like the way they describe him always applies.” (Carlsson et
al., 2016, p. 333).
 Meimei & Zenghui Reese et al.’s study found that there was still excellent diagnostic agreement between
(2022) clinicians and other teams in the video conferencing setting. Real-time
videoconferencing achieved the same results (sensitivity = 0.84, accuracy = 0.88) as
the psychometric properties of in-person assessments (sensitivity = 0.88, accuracy =
0.78), consistent with a previous review

Juárez et al. studied the preliminary feasibility, accuracy, and clinical utility of
diagnosing ASD via televideo conferencing. This study showed that telemedicine
procedures were as capable as in-person assessments at identifying children
diagnosed with ASD.

Although the TELE-ASD-PEDS is not designed for screening and diagnosing ASD,
preliminary data suggest that it is a useful and valid ASD diagnostic tool.

The benefits of multidisciplinary teams were noted. Multidisciplinary teams helped

compensate for the clinical setting of a formal diagnostic assessment, by allowing
observations to take place in a variety of environments.
Guan et al. (2022) Two of the 6 studies included self-reported changes in provider practice and
perceptions.21,23 The first found that the providers’ comfort level for discussing ASD
diagnosis increased. They also noted a large, statistically significant shift in reports of
practice behavior, with 68% of providers reporting that they were more likely to
conduct ASD assessments within their practice at the end of the training program.
Knowledge and Dorlack et al. For Module 1, pooled sensitivity was similar for the ADOS-G algorithm (Pooled
training – Evidence (2018) Random Estimate = 0.87, 95% CI 0.84–0.90), the ADOS-2 algorithm administered to
presented in relation children with no words (0.90, 95% CI 0.87–0.93), and the ADOS-2 algorithm
to what knowledge, administered to children having some words (0.88, 95% CI 0.82–0.94, Table 2).
skills, training, and
support are Pooled specificity estimates for the Module 1 algorithms of the ADOS-G, ADOS-2 used
required? with children having no words, and ADOS-2 used with children having some words
were 0.71 (95% CI 0.60–0.81), 0.62 (95% CI 0.43–0.81), and 0.79 (95% CI 0.70–0.88),
respectively.
Paired comparisons found that specificity of the ADOS-2 algorithm used with children
having some words increased by 7% (0.07, 95% CI 0.10 to 0.25), while specificity of
the ADOS-2 algorithm used with children having no words decreased by 8% (− 0.08,
95% CI 0.36 to 0.21), although neither of these measures were statistically significant.

Sensitivity measures remained similar across the ADOS-G and ADOS-2 algorithms,
with observed changes < 3%.

For Module 2, pooled sensitivity was 0.72 (95% CI 0.57–0.87) for the ADOS-G
algorithm, 0.77 (95% CI 0.63–0.90) for the ADOS-2 algorithm administered to children
< 5 years old, and 0.89 (95% CI 0.67–0.92) for the ADOS-2 algorithm administered to
children older than or
equal to 5 years of age.

Pooled specificity estimates for these three administrations were 0.90 (95% CI 0.83–
0.97), 0.90 (95% CI 0.84–0.96), and 0.77 (95% CI 0.66–0.88), respectively.

Paired comparison analyses found that sensitivity for the ADOS-2 algorithm used with
children < 5 years old remained unchanged from ADOS-G (0.01, 95% CI 0.24 to 0.26).

Sensitivity of the ADOS-2 algorithm used with children 5 years and older was
increased by 9% from the ADOS-G (0.09, 95% CI 0.03 to 0.21), although it was not
statistically significant.

Specificity measures were reduced by 8% for the ADOS-2 algorithm used with
children < 5 years old (− 0.08, 95% CI 0.21 to 0.05) and by 10% for the ADOS-2
algorithm used with children 5 years of age and older (− 0.10, 95% CI 0.28 to 0.07).
However, none of these differences were statistically significant.

For Module 3, pooled sensitivity was 0.75 (95% CI 0.66–0.84) for the ADOS-G
 algorithm and 0.82 (95% CI 0.75–0.90) for the ADOS-2 algorithm.

Pooled specificity estimates for the Module 3 ADOS-G and ADOS-2 algorithms were
0.79 (95% CI 0.68–0.90) and 0.72 (95% CI 0.57–0.87), respectively.

Paired comparison analyses found that sensitivity of the ADOS-2 algorithm was
significantly improved by 8% (0.08, 95% CI 0.03–0.13) from ADOS-G. Specificity of the
ADOS-2 algorithm was decreased by 7% (− 0.07, 95% CI 0.26 to 0.12) from ADOSG,
although it was not significant.
Rivera-Figueroa et They report that HCPs lack cultural knowledge and implicitly criticize or question
al. (2022) child-rearing practices and competence (Burkett et al., 2015).

Clinicians (a) are less likely to recognize the signs and symptoms of ASD in Latinx
children (Zuckerman et al., 2013).

The most widely used ASD assessment tools are normed on predominantly White
samples, and administration guidelines have little guidance regarding cultural
considerations (Harris et al., 2014).
Loubersac et al. The results suggest that the diagnosis of ASD occurs earlier if there is a delay in social
(2021) communication or the presence of intellectual disability.

Two studies found a significant association between more severe impairment in social
communication, as measured by the ADI-R [50, 72], and an earlier diagnosis of ASD,
whereas two other studies found no significant association.

A significant association was not found between the AoD and higher scores in the
area of social interaction disruption measured by the ADOS.

One study [40] found that children with a higher score in the RRB domain of the ADI-R
were diagnosed earlier, whereas another study found opposite result [50] with a
higher score in the RRB domain of the ADI-R associated with a later AoD. One study
[42] found no significant association using the same tool. Furthermore, the RRB score
measured with the ADOS did not appear to be significantly related to the AoD [50,
58].

An association between delayed intellectual development and an earlier diagnosis of

ASD was found in seven [36, 40, 49, 55, 66, 74, 75] of the ten studies [28, 36, 38, 40,
49, 55, 58, 66, 74, 75] that analyzed this factor.

Children with ASD and comorbid ADHD were diagnosed more than one year after
those without comorbid ADHD.

Lower language level (measured by PLS-4) was significantly associated with earlier
diagnosis.

Children who only started using sentences after 33 months of age were diagnosed
approximately three years before those without a language delay.

Darcy-Mahoney et al. (2016) [39] found a significant association between the AoD
and the mother’s marital status, with children of mothers who were married being
diagnosed earlier (mean AoD = 53 months) than those who are divorced (mean AoD =
63 months).

Valicenti-McDermott et al. (2012) [34] found no link between AoD and bilingualism in
the home.

African American children were diagnosed approximately1.4 years later than

Caucasian children, with the difference being identical after adjusting for gender and
socioeconomic status.

Bickel et al. (2015) [37], who studied the association between the AoD and having a
sibling with ASD, found that the presence of sibling with ASD is a significant predictor
 of earlier AoD.

Living in an “urbanized” area to be associated with a lower age at diagnosis of ASD.

Lebersfeld et al. ADOS-2 performance was stronger than the ADI-R. ADOS-2 sensitivity and specificity
(2021) ranged from .89-.92 and .81-.85, respectively. ADOS-2 accuracy in research compared
with clinical settings was mixed. ADI-R sensitivity and specificity were .75 and .82,
respectively, with higher specificity in research samples (Research = .85, Clinical =
.72).

Estimates of overall Se (.89–.92) and Sp (.81–.85) of the ADOS-2 as well as individual

estimates for identified articles.

When all articles were included, the DOR was higher for research compared with
clinical samples; however, inclusion of the setting covariate was not significant (p
=.071). Exclusion of the outlier had little effect on Se of the clinical sample but
increased the Sp of the clinical sample from .80 to .90, which is higher than
specificities reported in research samples (.81 and .83; Table 4).

Interpretation of the SROC plot (Fig. 3) for all three setting types (clinical, research,
and both) when all articles were included in the analysis and the Gotham et al. (2007,
2008) ASD vs. NS accuracy estimates were used (Approach 1) suggests research
samples have higher levels of accuracy compared with clinical samples and combined
clinical and research samples. When the outlier (Sp =.44) was removed from the
analysis (Fig. 4), and the ASD vs. NS accuracy estimates were used (Approach 3),
visual inspection of the SROC curve suggests there was not a difference between
accuracy of the ADOS-2 in research and clinical settings, and accuracy of the ADOS-2
for studies including both research and clinical evaluations was lower than either
research or clinical settings individually.

The ADI-R pooled Se was .75, Sp was .82, and individual articles ranged widely (Se
=.33–1.00, Sp =.61–1.00.
 Clinical and research samples had comparable Se (clinical = .71, research = .73) but
articles utilizing both research and clinical samples had higher Se (.82). Sp was higher
for research samples (.85) compared to clinical samples (.72) and those including both
research and clinical evaluations in the study (Se =.85–1.00; Sp =.44–1.00) are
presented in Table 4 and Fig. 5. These estimates were generally comparable to
published algorithms (Table 5).
Clark & Fung (2022) The results reported by these studies suggest that by completing specialized training
programs related to autism, physicians were more knowledgeable on topics related
to the condition, more confident in their ability to provide care to autistic individuals,
and more likely to screen their patients for autism spectrum disorder.

Despite the variations in training duration and frequency, all of the studies that
utilized the ECHO training model reported some level of positive outcomes
(Bellesheim et al., 2020; Giachetto et al., 2019; Mazurek et al., 2019; Mazurek, Parker,
et al., 2020; Mazurek, Stobbe, et al., 2020); however, not all of the studies showed
the same level of success.

Two of the three ECHO studies that measured knowledge and self-efficacy reported
significant changes to both outcome measures (Giachetto et al., 2019; Mazurek,
Parker, et al., 2020), but another was only able to significantly increase self-efficacy
and had no impact on knowledge.

Of the 17 included studies, 10 (59%) measured physician knowledge, eight (47%)

measured physician self-efficacy, and 11 (65%) measured some aspect of physician
behavior, mostly related to ASD screening. Most studies reported improvements in
one or more of these outcome measures, and these improvements were seen across
all participant groups regardless of their training level.

Medical students saw improvements in symptom identification and diagnostic

accuracy following an online-only training program.
 One study utilized the Autism Spectrum Disorder Knowledge Questionnaire–Physician
Edition (AKQ-P) to show that an educational program led to an initial increase in both
general autism knowledge and physician-specific autism knowledge.

While physician-specific autism knowledge remained increased at six months post-

training, general autism knowledge did not (van ‘t Hof et al., 2021).

Another study measured both the objective and self-assessed knowledge of residents
and found that both had been significantly increased after they participated in a case-
based training program.

Studies measuring self-efficacy found significant improvements in the outcome

measure following the completion of a specialized autism training program (Table 1).
For example, one study found that physicians became more comfortable with
identifying the symptoms of ASD, making appropriate diagnoses and referrals, and
providing care to autistic children.

Another study found that levels of self-efficacy remained increased six months
following the completion of a training program (van ‘t Hof et al., 2021), suggesting
that these educational programs are able to have a lasting impact on physicians’
confidence in their ability to provide care to autistic individuals.
Boshoff et al. A prominent parental experience amongst studies was reports of experiencing
(2019) problems with first line health professionals in the early identification of children with
ASD and access to services.
Parents reported being presented with a variety of unsatisfactory explanations as
alternatives to autism (Altiere & von Kluge, 2009).

Meimei & Zenghui Reese et al.’s study found that there was still excellent diagnostic agreement between
(2022) clinicians and other teams in the video conferencing setting. Real-time
videoconferencing achieved the same results (sensitivity = 0.84, accuracy = 0.88) as
the psychometric properties of in-person assessments (sensitivity = 0.88, accuracy =
0.78), consistent with a previous review.

Juárez et al. studied the preliminary feasibility, accuracy, and clinical utility of
diagnosing ASD via televideo conferencing. This study showed that telemedicine
procedures were as capable as in-person assessments at identifying children
diagnosed with ASD.

Although the TELE-ASD-PEDS is not designed for screening and diagnosing ASD,
preliminary data suggest that it is a useful and valid ASD diagnostic tool.

All diagnostic tools used a comprehensive set of

observables. The DSM-5 diagnostic criteria were used by NODA, TeleNP, and the tool
proposed by Juárez et al. to diagnose ASD. Although BOSA uses a standardized coding
manual developed in-house, the score still corresponds to the DSM-5 checklist and
the ADOS-2 score. Moreover, TeleNP also used the childhood autism rating scale
(CARS-2), the NEPSY second edition (NEPSY-II), Delis-Kaplan executive function
system (DKEFS), vineland adaptive behavior scales, third edition (VABS-3), and autism
diagnostic observation schedule, second edition (ADOS-2). Juárez et al. used STAT,
clinical best estimate (CBE), Mullen scales of early learning (MSEL), VABS-2, and
ADOS-2 as other observables. The most commonly used diagnostic tool is the ADOS-
2. Assessment tools such as the TELE-ASD-PEDS and the study by Reese et al. also
used a full range of observables, both of which used the ADOS-2; Reese et al. also
used the Autism Diagnostic Interview-Revised (ADI-R) for assessments.

Among the studies reporting psychometric information (n = 15), 8 reported sensitivity

and specificity values equal to or greater than 75%. However, it should be noted that
sensitivity values below this threshold may not indicate poor psychometric properties
as the tool may be reliable for detecting specific subgroups of ASD patients.

The study by Dow et al. had a better sensitivity (0.86–0.96) than that by Reese et al.
 [37] (0.88), while the application studied by NODA and Juárez et al. [19] presented a
sensitivity between 0.79 and 0.85. However, both NODA and Juárez et al. [19]
reported specificities greater than 0.94, while the specificity of BOSA fluctuated
between 0.70 and 1.
van’t Hof et al. Results showed the current mean age at diagnosis to be 60.48 months (range: 30.90–
(2021) 234.57 months) and 43.18 months (range: 30.90–74.70 months) for studies that only
included children aged ⩽10 years. Numerous factors that may influence age at
diagnosis (e.g., type of autism spectrum disorder diagnosis, additional diagnoses and
gender) were reported by 46 studies, often with conflicting or inconclusive results.

Multiple studies indicated that autistic disorder is associated with a lower age at
diagnosis and Asperger’s syndrome with a higher age.

Comorbid attention deficit hyperactivity disorder (ADHD) diagnosis, along with ASD, is
associated with a higher age at ASD diagnosis.

In 17 studies, there was no difference between the age at diagnosis for boys and girls,
whereas five studies reported a higher age at diagnosis for girls.

We included 56 studies that reported the mean and/or median age at ASD diagnosis,
of which 46 reported an overall ASD mean age at diagnosis between 30.9 and 574.4
months.

Of the 56 studies, 24 reported an overall ASD median age at diagnosis (only or

combined with mean age at diagnosis score) between 28 and 96 months.

Several studies reported the age at ASD diagnosis for distinct ASD subtypes. For
instance, the mean age at diagnosis for autistic disorder (eight studies) ranged
between 33.8 and 194 months and the median age at diagnosis (nine studies)
between 30 and 68.1 months.
For Asperger’s syndrome, the reported Christensen mean age at diagnosis (seven
studies) was between 59.5 and 316 months and the median age at diagnosis (nine
studies) was between 30 and 84 months.

For pervasive developmental disorder-not otherwise specified (PDD-NOS), the

reported mean age at diagnosis (eight studies) ranged between 34.60 and 211
months and the median age at diagnosis (five studies) ranged between 61 and 114
months.

Four studies reported a median age at diagnosis between 49 and 56 months for PDD-
NOS and ASD-other together.

One study reported that the median age at diagnosis for autistic disorder and PDD-
NOS combined was 34.8 months.

For ASD-other (two studies), the mean age was between 43.1 and 50.7 months and a
median age at diagnosis was between 33 and 47.0 months.

In total, the meta-analysis included 35 papers (reporting on 55 study samples with a

total study population of 66,966 individuals with ASD) across 35 countries that led to
a mean age at diagnosis between 30.90 and 234.57 months.
The meta-analysis shows a mean age at diagnosis of 60.48 months (95% CI: 50.12–
70.83).

Of the 35 studies, nine reported age at diagnosis estimates ranging from 30.90 to
74.70 months in 23 countries (26 study samples with a total study population of
18,134).

Mean age at diagnosis of 43.18 months (95% CI: 39.79–46.57) for children aged ⩽10
years.
The exclusion of three studies with the 95% CI bars well outside the range of the main
group in the forest plot in Figure 2 (Begeer et al., 2013; Kentrou et al., 2019;
Rutherford et al., 2016) lowered the age at diagnosis to 52.48 months (95% CI: 47.47–
57.49) for all included studies instead of 60.48 months (range: 30.90–234.57 m).

Regarding children aged ⩽10 years, the exclusion of one study with the 95% CI bars
well outside the range of the main group in the forest plot (Hrdlicka et al., 2016)
resulted in a lower age at diagnosis of 41.99 months (95% CI: 39.39–44.59) instead
43.18 months (range: 30.90–74.70 m).

a wide variety of factors that could affect the average age at diagnosis of ASD. These
factors are: (1) clinical characteristics, (2) sociodemographic characteristics, (3)
parental concern, (4) interactions of healthcare and education systems, (5)
geographic region and associated characteristics, and (6) cohort and period effects.

Four studies found that children/adolescents with autistic disorder were diagnosed
the earliest, followed by children with PDD-NOS and children with Asperger’s
syndrome were diagnosed the latest.

The lowest age at diagnosis for children with autistic disorder, followed by children
with PDD-NOS/Other ASD and children with Asperger’s syndrome.

Later age at diagnosis for children with Asperger’s syndrome than those on the
autism spectrum (Crane et al., 2016) and autistic disorder and PDD-NOS.

No differences were reported in the adult population.

Three studies reported differences in age at diagnosis based on ASD severity. Two of
these showed that ASD severity is negatively associated with age diagnosis, indicating
an earlier diagnosis is made in children with higher severity scores.
Moderate ASD is being diagnosed earlier than mild and severe forms of autism.

Children with Asperger’s syndrome or Pervasive developmental disorder, unspecified,

were referred for diagnostic assessment later than children with Atypical autism.

High functioning children (i.e. with Asperger’s syndrome) were diagnosed at a later
age (Hagberg & Jick, 2017) and children with a high ADOS-2 comparison score tend to
be diagnosed earlier than children with a minimal to low score (Höfer et al., 2019).

A diagnosis of attention-deficit/hyperactivity disorder (ADHD) and major congenital

anomaly was associated with a older age at ASD diagnosis.

Children with additional diagnoses, especially those with ADHD, dyslexia or dyspraxia,
were diagnosed later than children without these conditions.

Children with an ADHD diagnosis were often three (Wei et al., 2018) or four years
older (Miodovnik et al., 2015) when they were diagnosed with ASD.

Children with more complex diagnoses (with ADHD before ASD diagnosis, and those
diagnosed with ADHD at the same time as their ASD or later) were more likely to be
diagnosed with ASD after age 6 years compared to children with only ASD.

Some children with a later ASD diagnosis were more likely to have co-occurring
ADD/ADHD than children without ASD; this was true only in non-Hispanic-white and
non-Hispanic black children (NHB), but not in Hispanic-English or other Hispanics.

Age at diagnosis was younger for children with ASD and comorbid disorders (epilepsy,
auditory deficits, genetic/metabolic disorders) than children not on the autism
spectrum. Children who spoke in only single words or echoing were diagnosed earlier
than children with better verbal skills.
 Epilepsy and Cerebral palsy had no effect on the age at diagnosis of ASD.
Children with Gilles de la Tourette syndrome and ASD were diagnosed at an older age
than children with only ASD but not Tourette syndrome.

Lower age at diagnosis in children with ID (IQ<70) than in children without ID (IQ>70).

Another study found that an ASD diagnosis in children with IQ<85 was made earlier
than in children with IQ>85 (Höfer et al., 2019).

Frenette et al. (2013) found a significant lower mean age at diagnosis in children
without ID than with ID, but this disappeared in regression analyses. Cognitive
impairment was associated with a younger age at diagnosis (Montiel-Nava et al.,
2017). However, Brett et al. (2016) found that learning/intellectual disability did not
affect the age at diagnosis in a regression model controlling for multiple covariates.

There was conflicting evidence from studies on verbal skills and age at diagnosis. One
found that age at diagnosis was significantly higher for children who used complex
sentences than for both non-verbal- and minimally verbal children. However, they
found no differences in the age at diagnosis of non-verbal children and minimally
verbal children (Salomone et al., 2016).

Children who spoke in only single words or echoing were diagnosed earlier than more
verbal children, and language delay explained 8% of the variance in age at diagnosis
(Brett et al., 2016)

Positive association between verbal (and composite) IQ score and age at diagnosis,
indicating that children with no language delay were diagnosed significantly later (by
3 years) than children with language delay (Goodwin et al., 2017).
Info collected – What Rivera-Figueroa et The most widely used ASD assessment tools are normed on predominantly White
Evidence is presented al. (2022) samples, and administration guidelines have little guidance regarding cultural
in relation to what
information should considerations (Harris et al., 2014). Racial and ethnic disparities are exacerbated by a
be collected? lack of culturally competent healthcare.
Bashoff et al. Due to the invisible nature of autism, professionals often need to take parents’ word
(2019) for reported observations which may not be displayed during consultations (Midence
& O’Neill, 1999).
Meimei & Zenghui All diagnostic tools used a comprehensive set of observables. The DSM-5 diagnostic
(2022) criteria were used by NODA, TeleNP, and the tool proposed by Juárez et al. to
diagnose ASD. Although BOSA uses a standardized coding manual developed in-
house, the score still corresponds to the DSM-5 checklist and the ADOS-2 score.
Moreover, TeleNP also used the childhood autism rating scale (CARS-2), the NEPSY
second edition (NEPSY-II), Delis-Kaplan executive function system (DKEFS), vineland
adaptive behavior scales, third edition (VABS-3), and autism diagnostic observation
schedule, second edition (ADOS-2). Juárez et al. used STAT, clinical best estimate
(CBE), Mullen scales of early learning (MSEL), VABS-2, and ADOS-2 as other
observables. The most commonly used diagnostic tool is the ADOS-2. Assessment
tools such as the TELE-ASD-PEDS and the study by Reese et al. also used a full range
of observables, both of which used the ADOS-2; Reese et al. also used the Autism
Diagnostic Interview-Revised (ADI-R) for assessments.
Lockwood Estrin et Girls with ASD used gestures more vividly than boys.
al. (2020)
Girls with ASD made significantly more mistakes than boys on an emotion recognition
test.

Watson (2014) found that all participants (n = 13 females with a clinical ASD
diagnosis) reported having a co-occurring condition (e.g., ADHD), with 10 out ofthe 13
participants receiving their co-occurring diagnosis prior to ASD.

Boys who had an additional diagnosis were diagnosed significantly later than boys
who did not.
 Girls with an additional diagnosis were diagnosed later than girls who did not have an
additional diagnosis.

It has also been suggested that cognitive impairment increases the likelihood of
having a documented ASD diagnosis for boys, but not for girls (Giarelli et al. 2010).
Girls with an IQ of 70 or less were less likely than boys with an IQ of70 or less to have
a documented ASD diagnosis. This may suggest that once a cognitive impairment had
been identified in a female, it is less likely that an ASD assessment will take place.
Howes et al. (2021) Professionals reported difficulties with consistency of diagnostic categorization, and
that the different sources of expertise on ASD were difficult to integrate into one
uniformed view.

Parental understanding was understood to impact assessment processes. Participants

in Finke et al. (2010) acknowledged the importance of listening to parents as their
awareness of their child’s behaviors could be important in heightening the
professional’s “concern” that a diagnosis should be explored.

Standard assessments need to be supplemented with a personal approach to decide

what works for the child.
Info collected – How Valentine et al. Families could be coached to complete ASD assessment activities with young children
Evidence is presented (2021) via videoconferencing and clinicians could make accurate diagnoses remotely.
in relation to how
should information Juarez et al [21] reported on 2 studies, of which 1 compared a telediagnosis to a face-
be collected? to-face assessment. This study demonstrated that, compared to gold-standard tools,
remote ASD diagnostic consultations resulted in clinicians correctly diagnosing 78.9%
(15/19) of children. No children were inaccurately diagnosed with ASD.

Stainbrook and colleagues investigated referrals before and after the introduction of
a telehealth service. They found that implementing a diagnostic consultation service
for ASD, in partnership with an early intervention service, increased referrals for
diagnostic evaluation and the likelihood of families attending appointments.
Rivera-Figueroa et The most widely used ASD assessment tools are normed on predominantly White
al. (2022) samples, and administration guidelines have little guidance regarding cultural
considerations (Harris et al., 2014).
Ellison et al. (2021) One study (Reese et al., 2013), randomly assigned participants to either the in-person
administration group or VC administration group. Both groups were administered the
Autism Diagnostic Interview-Revised (Rutter et al., 2003). Video conferencing was
utilized to coach parents in implementing modified Autism Diagnostic Observation
Schedule (Lord et al., 2002)-Module 1 activities and presses with their children
compared to an in-person autism assessment utilizing these same presses. No
difference between diagnostic consistency was found between groups; inter-rater
agreement was not significantly different on the ADI-R and only one significant
difference for an item on the ADOS was found. Further, high parent satisfaction was
reported for both conditions.

After radonmized group assignment, remote assessors randomly provided prompts to

parents using an adaptation of the Screening Tool for Autism in Toddlers and Young
Children (Stone et al., 2000) via VC or used the TELE-ASD-PEDS to guide parents to
lead specific social tasks with their children (Corona et al., 2021). Both of these
telehealth administrations were used to establish diagnostic accuracy; across the
sample, diagnostic accuracy was 86–77% of parents reported that they would prefer
both to play and observe the child during the remote assessment instead of just
playing with the child or just observing (Corona et al., 2021). Based on these two
studies, it does appear that well-established diagnostic measures of ASD (i.e., ADOS
and ADI-R), as well as other measures of ASD symptomology, can be used via
telehealth successfully as accurate alternatives for identifying children with ASD
rather than solely relying on in-person assessments.

Primarily, all of the assessment studies included in this review demonstrate the
feasibility of using telehealth to accurately assess not only for diagnostic purposes,
but to also conduct other forms of assessments with children with ASD.
Boshoff et al. Parents also described that the methods by which health professionals assessed their
(2019) child were compromised. Assessments were typically conducted in environments
unfamiliar to the child, which impacted on the opportunity to observe the child’s full
potential (Carlsson, Miniscalco, Kadescjo, & Laakso, 2016). Other parents also
reported that they did not feel that the communication style used with their child was
optimal. One parent said “Maybe they are good at it, but I don’t always agree with
what they say, that’s what it feels like … I see him in so many other situations than
they do, so it doesn’t feel like the way they describe him always applies.” (Carlsson et
al., 2016, p. 333).
Meimei & Zenghui Reese et al.’s study found that there was still excellent diagnostic agreement between
(2022) clinicians and other teams in the video conferencing setting. Real-time
videoconferencing achieved the same results (sensitivity = 0.84, accuracy = 0.88) as
the psychometric properties of in-person assessments (sensitivity = 0.88, accuracy =
0.78), consistent with a previous review

Juárez et al. studied the preliminary feasibility, accuracy, and clinical utility of
diagnosing ASD via televideo conferencing. This study showed that telemedicine
procedures were as capable as in-person assessments at identifying children
diagnosed with ASD.

Although the TELE-ASD-PEDS is not designed for screening and diagnosing ASD,
preliminary data suggest that it is a useful and valid ASD diagnostic tool.
Howes et al. (2021) Tools and professionals judgments and individual differences were acknowledged
frequently in

Some professionals stated that weaknesses in diagnostic tools and guides meant that
tools were often not “subtle” enough (Rogers et al., 2016, p. 827) when trying to
diagnose someone with an atypical presentation.

Standard assessments need to be supplemented with a personal approach to decide

what works for the child
Decision making: Lockwood Estrin et Strict diagnostic criteria also led to delayed diagnosis for females, with one parent
Evidence is presented al. (2020) saying their daughter was declined diagnosis because ‘she’s two points above the
in relation to how cutoff score’.
should decisions be
made?
Howes et al. (2021) Tools and professionals judgments and individual differences were acknowledged
frequently in professionals felt that mediation between the outcome of the diagnostic
tools and their own professional judgment was necessary. This process was discussed
by two professionals in Karim et al. (2014, p. 118) as necessary, due to the “subjective
impressions” that were being “objectified” by the diagnostic tools.

When faced with long referral times, some professionals chose to diagnose
themselves, rather than refer to a specialist (Penner et al., 2017). They explained that
getting support for people with autism as quickly as possible was a key priority.

Additionally, the professionals perceived parental readiness to receive an ASD

diagnosis as closely related to their understanding of ASD.

In cases of diagnostic uncertainty, professionals would put the needs of the child and
family first, such as giving a “false positive diagnosis” (Rogers et al., 2016, p. 827), due
to diagnosis being a gateway for some services.

Within the postdiagnosis topic, the difficulties with support services were
acknowledged, along with the satisfaction of both the professionals and families.
Diagnosis was described as an entrance ticket to services and it was suggested that
professionals may feel coerced to make an ASD diagnosis due to the link between
diagnosis and service support.
Guan et al. (2022) PCPs reported their impression as to whether the child had ASD and stated the
specific DSM IV diagnostic subtype. Full agreement between the trained PCP and the
expert teams was 92% for the presence/absence of ASD and 87% for specific
subtypes.
 There were no significant differences in respect to parents’ perception of shared
decision making or family-centered care between the traditional model and the
trained PCP model.
Outcomes: Evidence Legg & Tickle Having a diagnosis gave access to support and helped with adjusting future
is presented in (2019) expectations.
relation to what
should be the Parents need to be taken seriously from the first point of seeking help. The
outcomes? relationship with the diagnosing professional makes a real difference to parents and it
is important fathers are included in this where they wish to be. Parents also wish to
maintain contact with services as they adjust to the diagnosis. It is likely that such
relationships could contain parents and help them to manage their emotional
reactions, which is likely to benefit both their well-being and that of their child.
Howes et al. (2021) Too little parental knowledge was a barrier to giving a diagnosis because it would
mean additional time was needed to explain the diagnosis, while too much
knowledge of the challenges a child with autism might face could indicate that the
family would not accept a diagnosis if it was given.

Professionals felt that mediation between the outcome of the diagnostic tools and
their own professional judgment was necessary. This process was discussed by two
professionals in Karim et al. (2014, p. 118) as necessary, due to the “subjective
impressions” that were being “objectified” by the diagnostic tools.

The family response was a crucial experience for professionals, with Jacobs et al.
(2018) identifying a dual effect where parents who had actively pursued an ASD
diagnosis were relieved when they received the diagnosis, but not giving a diagnosis
for these parents was seen as bad news. Additionally, some professionals
acknowledged that parents viewed the practical use of the diagnostic label, such as
an explanation for why their child might behave in a certain way, to be more
important than it being an explanation of their child’s condition.
 The professionals in the Finke et al. (2010) study stated that a discussion around the
worries of the causes of ASD, such as vaccines, was crucial to informing the family of a
diagnosis.

Professionals in Rogers et al. (2016) recognized the need to communicate both the
positive and negatives of the ASD diagnosis with both the person with autism and
their family.

Within the postdiagnosis topic, the difficulties with support services were
acknowledged, along with the satisfaction of both the professionals and families.
Diagnosis was described as an entrance ticket to services, and it was suggested that
professionals may feel coerced to make an ASD diagnosis due to the link between
diagnosis and service support.
Guan et al. (2022) A small number of patients were included in studies that reported accuracy (n 5 14–
38). Diagnostic agreement between the trained providers and the expert teams
ranged between 74% and 100%. Notably, each of these studies reported absolute
agreement, without adjustment for chance agreement; the rates of ASD diagnosis by
the expert teams ranged from 41% to 78%.
Info sharing: Legg & Tickle Feedback session was anxiety provoking and had significant emotional impact. Structured and
Evidence is presented (2019) focussed approach was valued.
in relation to how
should information Diagnostic process was hard to understand, and parents did not understand roles of
professionals.
be shared?
Parents were unaware of potential support available following diagnosis.

Delivery of diagnosis was criticised for being too brief with a lack of sensitivity and a focus on
negative aspects.

Lack of adequate information and support at the time and following diagnosis was highlighted.

Some expressed disappointment in the way diagnosis was communicated.

 Parents had mixed views, with some seeing assessments as comprehensive and others
expressing disappointment that clinicians did not spend more time or show them recordings of
assessments:
It did seem really short [session where clinician interacted with son] it didn’t … I mean it was
only about fifteen minutes … and I don’t see how you can make a judgement just within half an
hour of watching a child, because surely it would take a bit longer. (Griffith et al., 2013, p. 64).

Those parents who received it valued information and support from professional services after
diagnosis:
The child psychologist gave us, you know, she was very good, she gave us, a massive great
book actually on, you know, various exercises that might help developmental wise. (Evans,
2010, p. 68).

Good communication from professionals towards both parents and children promoted good
relationships between parents and professionals. Such relationships are likely to have been
containing for parents who have concerns about their children and promote positive
engagement in the assessment process.

Parents are likely to be more satisfied when assessments include more time building
relationships between the professional and the child and when information is provided to the
parents, including through observation of assessments.
Boshoff et al. Parents reported being presented with a variety of unsatisfactory explanations as alternatives
(2019) to autism (Altiere & von Kluge, 2009).

Through the process of reaching a diagnosis for their child, parents experienced confusion as
a result of professionals often providing various alternative suggestions to a diagnosis of
autism (Altiere & von Kluge, 2009).

They also described receiving information through a standard brochure rather than individual
support. These parents reported that had the health professionals used a warmer and more
personal interaction style in their communications, it would have made hearing the formal
diagnosis much easier (Jegatheesan et al., 2010).

Parents from different cultural backgrounds reported communi‐ cation (Luong et al., 2009)
and interaction difficulties (Jegatheesan et al., 2010), perceived to significantly impact on the
 relationship between parents and providers, leaving parents with a preference to consult
with doctors from a similar cultural and linguistic background.

“She said, from there, there is really nothing more that you can do … Goodbye and
good luck’, ‘What she gave was sort of nothing … no hope.”

“That is how he is, he is going to go down, and you are going to be stuck with this,
let’s say, vegetable’”
Howes et al. (2021) Within informing of a diagnosis, the families response, and positive and negative aspects of
ASD seemed to be important aspects to several of the articles. Difficulties with services were
identified to be a factor of the postdiagnosis experience for many of the articles.

Communicating the diagnosis to the person and their family was described as timeconsuming
and was a barrier to the decision to diagnose, as it meant a “whole separate visit” (Penner et
al., 2017, p. 601) was needed in addition to the necessary visits during the assessment.

Crane et al. (2018) identified that a balance was needed between raising awareness and
sensitivity being used to inform parents of a possibility that their child may be displaying
autistic traits. For example, one professional in Crane et al. (2018) identified that they
sometimes had parents be told their child might have autism because they had “put their
hands over their ears when they heard a loud noise” (Crane et al., 2018, p. 3766) and that in
reality there are many reasons for this behavior not just autism.
too little parental knowledge was a barrier to giving a diagnosis because it would mean
additional time was needed to explain the diagnosis, while too much knowledge of the
challenges a child with autism might face could indicate that the family would not accept a
diagnosis if it was given.

A lack of facts on ASD meant that some professionals felt they could not convey clear
messages to parents about the diagnosis.

Some professionals felt that communicating the diagnosis to the person and their family was a
significant emotional burden.
Multidisciplinary teams also allowed staff access to other professional opinions and expertise,
when faced with uncertain cases.

Multidisciplinary teams were thought to support parents’ experience of the diagnostic process,
as they allowed parents “time to talk” and gave clarity about the diagnostic process.

Parents having some knowledge of ASD was thought to facilitate communication between the
professional and the family.

When informing the family of an ASD diagnosis, one study found that terminology is
crucial, and some professionals suggested that they used the term “Asperger’s” as they
perceived the information available about Asperger’s Syndrome to be less frightening than
“autism” (Karim et al., 2014, p. 120). A professional in the Finke et al. (2010) study discussed
that he would attempt to facilitate parents in their internet searching by telling them what they
might see on the internet.

Professionals depended on parents to disclose a diagnosis to the child, but would tell an
adolescent of their diagnosis.

The family response was a crucial experience for professionals, with Jacobs et al. (2018)
identifying a dual effect where parents who had actively pursued an ASD diagnosis were
relieved when they received the diagnosis, but not giving a diagnosis for these parents was
seen as bad news. Additionally, some professionals acknowledged that parents viewed the
practical use of the diagnostic label, such as an explanation for why their child might behave in
a certain way, to be more important than it being an explanation of their child’s condition.

The most important implication of informing a diagnosis for the professionals from the Jacobs
et al. (2018) study was the function of lifting the blame on parents for their child’s behavior.

The professionals in the Finke et al. (2010) study stated that a discussion around the worries of
the causes of ASD, such as vaccines, was crucial to informing the family of a diagnosis.

Additionally, the professionals perceived parental readiness to receive an ASD diagnosis as

closely related to their understanding of ASD.
 In cases of diagnostic uncertainty, professionals would put the needs of the child and family
first, such as giving a “false positive diagnosis” (Rogers et al., 2016, p. 827), due to diagnosis
being a gateway for some services.

Professionals in Rogers et al. (2016) recognized the need to communicate both the positive
and negatives of the ASD diagnosis with both the person with autism and their family.

Professionals stated they were often unable to offer support, even though they wanted to, and
that they were put under “pressure” not to offer postdiagnostic support due to the demands
that were already on them.
Brown et al. (2021) Some fathers described healthcare professionals not discussing the diagnosis and
prognosis with them, with a need to provide information in language they could
understand (Manor-Binyamini, 2019).
Many fathers described feeling ignored by professionals in services, highlighting the
view that there were more supports provided for mothers than fathers (Potter, 2017).
 Update of the National Guideline for the Assessment and Diagnosis of Autism in
Australia

Appendix 5.1 Online survey

 Page 1
Community Survey

[Attachment: "Voice-to-text instructions.doc"]

02/28/2023 11:21am projectredcap.org

 Page 2

Information Statement for the Research Project:

Update of the National Guideline for Assessment and Diagnosis of Autism in Australia: Community Consultation
Online Survey

(GU ref no: 2022/780)

Part 1: Participation Information

What is this project about?

Autism CRC is leading the update of the National Guideline for Assessment and Diagnosis of Autism Spectrum
Disorders in Australia. The Guideline, developed in 2018, will be undergoing a review and update based on recent
research and consultation with members of the autistic and autism communities. The result will be a set of
Recommendations and Good Practice Points to guide the practice of practitioners involved in assessment and/or
diagnosis of autism in Australia.

Why are you being invited to participate?

We warmly invite all members of the autistic and autism communities who have an interest in assessment and
diagnosis to share your views about the Guideline.

Who can participate in the research?

We would like to hear from the following people:

People on the autism spectrum (this includes children, young people, and people who communicate mainly in ways
other than speech and/or writing). Parents, caregivers, and family members of individuals on the autism spectrum.
Practitioners involved in assessment and/or diagnosis of autism across the lifespan. Other members of the autism
community (e.g., informal support people, service providers, researchers). Where a person is under the age of 18
years, or is unable to provide informed consent, a parent or guardian will need to provide consent and support that
person in accessing and/or completing the survey.

What will you be asked to do?

You will be asked to answer questions about assessment and diagnosis of autism. The questions are designed to
help us work out what works well, what does not work well, and what practitioners can do to make it better. You will
be asked to write your answers, but there will also be opportunities to upload artwork if preferred.

You can choose to give responses for some or all of these. We anticipate it will take between 10 and 60 minutes to
complete, depending on how many questions you answer. You can return to the survey up to one week after you
begin, provided the survey is still open. After one week, if the survey is still open, you would need to commence a
new survey if you want to answer more questions.

Do I have to participate?

You can choose whether or not you participate. If you choose to complete the survey, we will take this as permission
to use the information provided in updating the Guideline. If you decide not to participate, this decision will not
disadvantage you or impact your relationship with Griffith University or any other institutions affiliated with this
research.

What happens if I change my mind?

If you begin the survey and decide that you would like to withdraw consent, there is a button at the end of the
survey you can select to indicate that you no longer want the information you provided to be used in the project. If
you change your mind after submitting the survey, your individual responses will still be analysed but rest assured
you will not be identified due to the anonymous nature of data collection.

What are the benefits of participating?

We hope that it will be a positive experience for you, in helping to inform the Guideline. While you will not receive
any direct benefits from participating in this research, the benefits of the research more broadly include an increase
in knowledge and understanding regarding the most important factors relevant to assessment and diagnosis of
autism.

Are there any potential risks?

We do not believe there are any direct risks associated with participation in this research. However, we understand
that for some
02/28/2023 people thinking and talking about their experiences, can lead to a mixture
11:21am of emotions, including
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sadness. If you, or anyone close to you, participates in this research and experiences any distress, we ask that you
contact support services such as Lifeline on 13 11 14. More information on freely available mental health services
can be found at https://www.healthdirect.gov.au/mental-health-helplines.

Who are the researchers?

A/Professor David Trembath, Griffith University & Telethon Kids Institute Dr Emma Goodall, Griffith University
Professor Andrew Whitehouse, Telethon Kids Institute & University of Western Australia Dr Rhylee Sulek, Griffith
University Dr Kandice Varcin, Griffith University & Telethon Kids Institute Dr Hannah Waddington, Victoria University
of Wellington Dr Nicole Dargue, Griffith University Dr Veronica Frewer, Griffith University Dr Rachelle Wicks, Griffith
University Libby Groves, Griffith University Emma Hinze, Griffith University Who can I contact for further information?

You might be unsure if you are able to participate or unsure about how the research process works. We encourage
you to contact the project team ([email protected]) to discuss this and anything else you might wish to talk
about in relation to the project. This email address is monitored each working day by A/Prof David Trembath and
members of the project team.

How can I receive information about the research results?

Regular updates regarding the progress of the Guideline including a summary of the outcomes of this survey, will be
provided on the Autism CRC website. Participants will be able to access a copy of the updated Guideline, once
published. If you would like to discuss this further with the research team, you can do so via email
([email protected]).

How can I trust this research is safe for me?

This research is being conducted by skilled research staff and supported by a Guideline Development Group that
includes people with a range of knowledge and experience, including autistic adults and family members of people
on the autism spectrum. The team has carefully selected the questions, considered how they are presented in the
survey, and has made available different options for you and other people to share your thoughts. Only anonymous,
summarised, and combined survey data will be used and reported.

Part 2: Ethical Information we must provide you.

What will be done with the data?

We will use the information you and others provide to help develop a set of draft recommendations for assessment
and diagnosis of autism across the lifespan, and then share these with the community for feedback. We may also
publish the findings in research journals and in professional (e.g., conferences) and community forums (e.g.,
seminars, via social media).

When we share the data, we will:

Present a summary of de-identified information about who participated (e.g., the variety of practitioners, broad
geographical areas represented) in the Guideline and related documents. Present the themes that emerge from
responses and use direct quotes from participants to help explain what the themes are about, in the Guideline and
related documents. Any quotes will be presented de-identified, not using your real name. It is possible that if you
read the findings or see them presented at a workshop or seminar that you might recognise your own quotes, but we
will never attach real names to these quotes. We will make a copy of the de-identified information (i.e., themes and
quotes) available in a public repository for people to review and possibly use in other research. No personally
identifying information will be included. How will privacy be protected?

The conduct of this research involves the collection, access, storage and/or use of your identified personal
information. The information collected is confidential and will not be disclosed to third parties without your consent,
except to meet government, legal or other regulatory authority requirements. A de-identified copy of this data may
be used for other research purposes, including publishing openly (e.g. in an open access repository). However, your
anonymity will at all times be safeguarded. For further information consult the University's Privacy Plan at
http://www.griffith.edu.au/about-griffith/plans-publications/griffith-university-privacy-plan or telephone (07) 3735
4375.

To further explain how your privacy will be protected, all of the data that is collected through the survey will be
completely confidential. All data will be stored securely on an encrypted and password protected storage drive that
will be accessible only by the members of the research team. This data will be stored securely for five years.

The ethical conduct of this research

Griffith University conducts research in accordance with the National Statement on Ethical Conduct in Human
Research. Please feel free to contact the researchers if you have any questions ([email protected]). If you
have any additional questions or concerns about ethical issues, please contact the Manager, Research Ethics, at
Griffith University Human Research Ethics Committee ([email protected]; 07 3735 4375).

Consent to Participate
Consent Form for the Research Project:

Update of the National Guideline for Assessment and Diagnosis of Autism in Australia: Community Consultation
Online Survey

(GU ref no: 2022/780)

Community Consultation: Online Survey

I confirm that I have read and understood the information sheet and I have noted that:

I understand that my participation in this research will involve completing a survey, which may take between 10-60
minutes to complete, depending on how many questions I decide to answer. I understand that any information I
provide on behalf of myself or another person (i.e., a child, young person, or adult on the autism spectrum) will be
used to inform the update of the National Guideline for Assessment and Diagnosis of Autism Spectrum Disorders in
Australia. I understand that any written responses provided in this activity may be reproduced in the Guideline and
related research activities (e.g., community presentations, research articles, online news and newsletters, social
media), provided they contain no personally identifying information. I understand that my de-identified data may be
included in a public repository for people to review and possibly use in other research. I have read the Information
Statement, or someone has read it to me in a language that I understand. I understand why this research is being
conducted and how I can participate. I understand any risks as described above. I have had an opportunity to ask
questions and I am satisfied with the answers I have received. I understand that I am free to withdraw at any time
during the project without question or consequence. I understand that I can contact the Manager, Research Ethics, at
Griffith University Human Research Ethics Committee if I have any concerns about the ethical conduct of this project
([email protected]; 07 3735 4375).

I agree to participate in this research No

Yes

Thank you again for your interest in this research.

As a reminder, you will have the opportunity to save your responses and return at a later time to complete this
survey.

To assist us in our data analysis, we ask that you please finalise your responses within one week of starting the
survey.

We will not analyse any additional responses provided in this particular form after this time.

If you need longer than one week to complete the survey, we ask that you start a new form after one week.

The survey will close at 5:00pm AEST on Monday the 5th of December, 2022
 Page 5

Please note: In this survey we refer to autism, rather than Autism Spectrum Disorder. However, for clarity, where
questions relate to diagnosis, we are referring to Autism Spectrum Disorder (ASD), as presented in The Diagnostic
and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR).

ABOUT ME

Please answer these questions to help us understand more about you, your experience and perspective.

Which of the following describes you? (select all that I am an autistic person/person on the autism
apply) spectrum
I am a parent, caregiver, or family member of an
autistic person
I am a practitioner involved in the assessment
and/or diagnosis of autism
I am a member of an organisation/body/group that
has an interest in the assessment and/or diagnosis
of autism
Other (e.g., support person, researcher)

Please specify if you are: Completing this survey on your own

Completing the survey with support

Please specify your relationship to the autistic

person/person on the autism spectrum (e.g., parent, __________________________________
caregiver, grandparent, sibling)

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What is your profession (select all that apply)? Aboriginal and Torres Strait Islander Health
Worker or Health Practitioner
Aboriginal and Torres Strait Islander Health
Advocate
Accredited practising dietitian
Audiologist
Board Certified Behaviour Analyst
Childcare worker
Dentist
Developmental educator
Educator (early childhood)
Educator (primary school)
Educator (high school)
Gastroenterologist
General practitioner
Geneticist
Neurologist
Nurse
Nurse practitioner
Occupational therapist
Ophthalmologist
Optometrist
Paediatrician
Physiotherapist
Psychiatrist
Psychologist
Sleep and respiratory physician
Social worker
Speech pathologist
Support worker
Other

As you selected 'Other' for your profession, please

specify __________________________________

As you selected 'Other' to describe yourself, please

specify __________________________________

As you selected that you are a member of an I am completing this survey as an individual
organisation/body/group, please indicate which of the member of an organisation (i.e., the views are my
following apply: own)
I am completing this survey as the nominated
representative of the organisation (i.e., I am
making a submission on behalf of the organisation
as a whole)

What is your age? 0-12 years (child)

13-17 years (adolescent)
18-25 years (young adult)
26 years or older (adult)

Which state or territory of Australia do you currently Australian Capital Territory

reside in? New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
Do not currently reside in Australia

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Which state(s) or territory(ies) of Australia does Australian Capital Territory

your organisation/body/group conduct services in? New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
Does not currently service Australia

Do you identify as Aboriginal and/or Torres Strait No

Islander? Yes, Aboriginal
Yes, Torres Strait Islander
Yes, both Aboriginal and Torres Strait Islander

Have you read or used the previously published Yes

'National Guideline for the Assessment and Diagnosis No
of Autism Spectrum Disorders in Australia' (2018)?

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Autistic people/people on the autism spectrum

You indicated that you are an autistic person/person Yes
on the autism spectrum, are you happy to tell us about No
your diagnosis?

Which of the following best describes your I have been given a formal diagnosis of autism (or
circumstances? a related diagnosis e.g., Asperger's, Pervasive
Developmental Disorder) by one or more qualified
health practitioners (e.g., paediatrician,
clinical psychologist, psychiatrist)
I am currently being assessed for a possible
diagnosis of autism
I self-identify as autistic, but have not been
given a formal diagnosis by a qualified health
professional

At what age did you receive a formal diagnosis? Please

specify in years __________________________________

What was your diagnosis (e.g., Autism Spectrum

Disorder, Asperger's)? __________________________________

At the time you were diagnosed, what level of support Level 1 - Required support
did you need to participate in everyday activities? Level 2 - Required substantial support
Level 3 - Required very substantial support
I am unsure
I would prefer not to say

How did you decide on this level? It was the level the practitioner assigned when I
was diagnosed
It is the level I think was most appropriate at
the time I was diagnosed

What level of support do you currently need to Level 1 - Requires support

participate in everyday activities? Level 2 - Requires substantial support
Level 3 - Requires very substantial support
I am unsure
I would prefer not to say

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Family members
You indicated that you are a parent, caregiver, or Yes
family member of an autistic person/person on the No
autism spectrum, are you happy to tell us more about
your family member on the autism spectrum?

We will ask you to focus on just one family member at

a time.

What is your relation to this particular family member

(e.g., parent, caregiver, sibling, grandparent)? __________________________________

Will this family member contribute to responses in the Yes

survey? No

How old is your family member? 0-12 years (child)

13-17 years (adolescent)
18-25 years (young adult)
26 years or older (adult)

Has your family member received a formal diagnosis of No

autism (or a related condition e.g., Asperger's, Yes
Pervasive Developmental Disorder)?

At what age was your family member diagnosed (please

round to the nearest year)? __________________________________

At the time your family member was diagnosed, what Level 1 - Required support
level of support did they need to participate in Level 2 - Required substantial support
everyday activities? Level 3 - Required very substantial support
I am unsure
I would prefer not to say

How did you decide on this level? It was the level the practitioner assigned when
they were diagnosed
It is the level I think was appropriate at the
time they were diagnosed

Do you wish to provide details for another family No

member on the autism spectrum? Yes

What is your relation to this particular family member

(e.g., parent, caregiver, sibling, grandparent)? __________________________________

Will this family member contribute to responses in the Yes

survey? No

How old is your family member? 0-12 years (child)

13-17 years (adolescent)
18-25 years (young adult)
26 years or older (adult)

Has your family member received a formal diagnosis of No

autism (or a related condition e.g., Asperger's, Yes
Pervasive Developmental Disorder)?

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At what age was your family member diagnosed (please

round to the nearest year)? __________________________________

At the time your family member was diagnosed, what Level 1 - Required support
level of support did they need to participate in Level 2 - Required substantial support
everyday activities? Level 3 - Required very substantial support
I am unsure
I would prefer not to say

How did you decide on this level? It was the level the practitioner assigned when
they were diagnosed
It is the level I think was appropriate at the
time they were diagnosed

Do you wish to provide details for another family No

member on the autism spectrum? Yes

What is your relation to this particular family member

(e.g., parent, caregiver, sibling, grandparent)? __________________________________

Will this family member contribute to responses in the Yes

survey? No

How old is your family member? 0-12 years (child)

13-17 years (adolescent)
18-25 years (young adult)
26 years or older (adult)

Has your family member received a formal diagnosis of No

autism (or a related condition e.g., Asperger's, Yes
Pervasive Developmental Disorder)?

At what age was your family member diagnosed (please

round to the nearest year)? __________________________________

At the time your family member was diagnosed, what Level 1 - Required support
level of support did they need to participate in Level 2 - Required substantial support
everyday activities? Level 3 - Required very substantial support
I am unsure
I would prefer not to say

How did you decide on this level? It was the level the practitioner assigned when
they were diagnosed
It is the level I think was appropriate at the
time they were diagnosed

Do you wish to provide details for another family No

member on the autism spectrum? Yes

What is your relation to this particular family member

(e.g., parent, caregiver, sibling, grandparent)? __________________________________

Will this family member contribute to responses in the Yes

survey? No

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How old is your family member? 0-12 years (child)

13-17 years (adolescent)
18-25 years (young adult)
26 years or older (adult)

Has your family member received a formal diagnosis of No

autism (or a related condition e.g., Asperger's, Yes
Pervasive Developmental Disorder)?

At what age was your family member diagnosed (please

round to the nearest year)? __________________________________

At the time your family member was diagnosed, what Level 1 - Required support
level of support did they need to participate in Level 2 - Required substantial support
everyday activities? Level 3 - Required very substantial support
I am unsure
I would prefer not to say

How did you decide on this level? It was the level the practitioner assigned when
they were diagnosed
It is the level I think was appropriate at the
time they were diagnosed

Do you wish to provide details for another family No

member on the autism spectrum? Yes

What is your relation to this particular family member

(e.g., parent, caregiver, sibling, grandparent)? __________________________________

Will this family member contribute to responses in the Yes

survey? No

How old is your family member? 0-12 years (child)

13-17 years (adolescent)
18-25 years (young adult)
26 years or older (adult)

Has your family member received a formal diagnosis of No

autism (or a related condition e.g., Asperger's, Yes
Pervasive Developmental Disorder)?

At what age was your family member diagnosed (please

round to the nearest year)? __________________________________

At the time your family member was diagnosed, what Level 1 - Requires support
level of support did they need to participate in Level 2 - Requires substantial support
everyday activities? Level 3 - Requires very substantial support
I am unsure
I would prefer not to say

How did you decide on this level? It was the level the practitioner assigned when
they were diagnosed
It is the level I think was appropriate at the
time they were diagnosed

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Practitioners
You indicated that you are a practitioner: are you Yes
happy to tell us more about your experience with No
assessment and/or diagnosis of autism?

How are you currently involved in assessment and/or I refer individuals with possible autism for
diagnosis of autism? (select all that apply) assessment
I conduct assessments that are relevant to
considering an autism diagnosis
I conduct assessments and diagnose autism
I provide services to individuals once they have
received an autism diagnosis
Other

As you selected 'Other', please specify your current

involvement in assessment/diagnosis of autism __________________________________

How many years of experience do you have in the

assessment and/or diagnosis of autism? __________________________________

Please use the year you started and the year you
finished/present time to calculate this. For example,
if you started being involved in assessment and
diagnosis in 2018, and are still involved currently
(2022), you would answer 4 years even if there were
some career breaks.

Which of the following are you (or have you been) Medical evaluation
involved in, as part of your practice in the Assessment of functioning
assessment and/or diagnosis of autism (select all that Single clinician diagnostic evaluation
apply): Consensus team diagnostic evaluation
None of these

How many years of experience do you have working in

clinical practice with individuals on the autism __________________________________
spectrum?

Please use the year you started and the year you
finished/present time to calculate this. For example,
if you started working with individuals on the autism
spectrum in 2018, and are still doing so currently
(2022), you would answer 4 years even if there were
some career breaks.

Across your career to date, what age groups have you 0-12 years (children)
provided autism assessment and/or diagnostic services 13-17 years (adolescents)
to? 18-25 years (young adults)
26 years and older (adults)
I do not provide assessment and/or diagnostic
services to people on the autism spectrum

In which of the following service settings do you Private, including non-government organisations
practice? (select all that apply) Government organisations (e.g., hospital and
health services)

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In which of the following settings do you currently Hospital (inpatient/outpatient)

provide assessment and/or diagnostic services? (select Community clinic (including private practice)
all that apply) University clinic (includes providing services as
part of student training and research)
Other

As you selected 'other' for the setting you currently

provide assessment and/or diagnostic services within, __________________________________
please specify

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Organisation/body/group
You indicated that you are responding as part of an Yes
organisation/body/group: are you happy to provide us No
with more details about your organisation/body/group?

What is the name of your organisation?

__________________________________

In under 30 words, please explain how your

organisation is relevant to the assessment and/or
diagnosis of autism across the lifespan. __________________________________________

SUMMARY OF QUESTIONS

This is a summary of the questions/sections in the survey, to help you work out which ones you might like to answer.

Section 1 This section invites you to share views and experiences of assessment and diagnosis (i.e., what is/was
good, not good, and what you would change).

This section provides an opportunity to share your own experience and views and/or to help another person (e.g.,
your child or another family member) share their views.

Section 2 This section invites you to share your views on specific aspects of the assessment and diagnosis process
(i.e., regarding principles that should be followed, referral, assessment of functioning, medical evaluation, diagnostic
assessment, quality and safeguarding).

This section focuses on what practitioners can do to help improve the process of assessment and diagnosis for
individuals and their families.

Section 3 Invites you to share your thoughts about the existing Guideline and the update.

This section focuses on what you would like to see changed or added to the Guideline, as well as your views on
barries and enablers to the implementation of Recommendations in the Guideline.

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SECTION 1: Sharing views and experiences of assessment and diagnosis

We would like to start by inviting you to share views and/or experiences regarding assessment and/or diagnosis of
autism.

If you are a person on the autism spectrum, a family member, or someone else who has a personal experience of
going through the process, we invite you to share your personal experience. If you are a practitioner or a member of
an organisation that provides services, we invite you to share your observations based on professional experience.
Some people may have both personal and professional experience, please share the information you feel is most
relevant. If you are assisting someone else to complete the survey (e.g., you are asking your child for their views
about assessment and diagnosis) you can also do that here. There is also an opportunity to upload an artwork as a
way of sharing experiences and views. When helping someone else to share their views (i.e., your child/family
member), we ask you to please:

Ensure that they are aware that they know that sharing their experience and views is their choice (i.e., it is
voluntary) and that what they share will be provided to us, the research team. If they agree, please ask the following
questions in a way that they will understand and be meaningful to them. If you are recording their response, please
write down exactly what they say wherever possible.

Would you like to share your views and experience? Yes

No

You can respond to the questions below by recording your responses in the feedback boxes or by producing a piece
of art (e.g., a drawing, painting or other artwork) about your views and experiences of the assessment and/or
diagnostic process and uploading it below.

What do you think is/was good about the assessment

and/or diagnostic process?
__________________________________________
(word limit=150 words)

What do you think is/was bad about the assessment

and/or diagnostic process?
__________________________________________
(word limit=150 words)

What do you think should be done better?

(word limit=150 words) __________________________________________

If you are uploading a piece of artwork about your

experience, please attach an image or file of the
artwork here:

Please tell us what the artwork is about and the

messages that are shared through the artwork about
assessment and/or diagnosis. __________________________________________

(word limit = 200 words)

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SECTION 2: Sharing your views about how specific aspects of assessment and diagnosis should
occur
In this section, we ask for your feedback on how specific aspects of assessment and diagnosis should occur. We ask
you to identify what practitioners should do to ensure specific aspects of assessment and diagnosis are timely,
accurate and supportive to people on the autism spectrum and their families.

Would you like to answer one or more questions in this Yes

section? No

What are the most important principles (e.g., evidence

based, strengths focused) that practitioners should
follow in the assessment and diagnosis of autism? __________________________________________

(word limit = 150 words)

What are the most important considerations for

practitioners when making a referral for assessment
and possible diagnosis of autism? __________________________________________

(word limit = 150 words)

What are the most important considerations for

practitioners when conducting an assessment of
functioning* that may lead to a diagnosis of autism? __________________________________________
(*An assessment of functioning seeks to understand
(word limit = 150 words) an individual's level of functioning and needs in
order to support their full participation in
society. It requires the collection of a range of
information.)

What are the most important considerations for

practitioners when conducting a medical evaluation* as
part of a possible diagnosis of autism? __________________________________________
(*The aim of the medical evaluation is to assess
(word limit = 150 words) whether there are medical causes and/or
associations with the behavioural presentation of
an individual and to contribute to the
identification of additional support needs.)

What are the most important considerations for

practitioners when conducting a diagnostic assessment*
as part of a possible diagnosis of autism? __________________________________________
(*The diagnostic assessment seeks to answer the
(word limit = 150 words) questions: (i) Does the individual meet criteria
for a clinical diagnosis, such as ASD or other
differential or co-occurring conditions? and (ii)
if the individual does not meet criteria for a
clinical diagnosis, are there other considerations
that explain the presentation?)

What are the most important considerations for

practitioners to ensure the safety and wellbeing of
individuals during the assessment and diagnostic __________________________________________
process?

(word limit = 150 words)

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SECTION 3: Sharing your views about the existing Guideline and the update
Would you like to share your thoughts on the current Yes
version (i.e., the original 2018 version) of the No
Assessment and Diagnosis Guideline and/or the update
process?

Do you have experience with the Guideline (e.g., you Yes

have used it, tried to use it, or accessed an No
assessment where it was used?)

Is there anything you would like to see changed or Yes

clarified in the Guideline, when it is updated? No

Please state what you would like to see changed?

(word limit = 150 words) __________________________________________

Are there any questions or issues about the assessment Yes

and diagnostic process that you feel were not No
addressed in the original Guideline, that you would
like to see addressed in the updated Guideline?

Please list the questions/issues you would like to see

addressed
__________________________________________
(word limit = 150 words)

If you haven’t already identified these, what are

the barriers to implementing the Recommendations in
the existing guideline? __________________________________________

(word limit = 150 words)

If you haven’t already identified these, what are

the enablers to implementing the Recommendations in
the existing guideline? __________________________________________

(word limit = 150 words)

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Before you go
Are you happy for us to use the information you Yes
provided? No

A note from the research team

Thank you very much for answering the questions. The information that you and others provide will directly inform
the update of the Guideline.

The next step for the research team will be to analyse all of the information provided. The Guideline Development
Group will then formulate updated Recommendations.

If you have not already done so, please register with Autism CRC to receive updates about the guideline. You can do
so here https://www.autismcrc.com.au/access/national-guideline/2022-update.

Before we finish, we want to take a moment to acknowledge the time it takes to complete surveys like this. While we
are not able to send a personal response to each person who completes it, please know that we genuinely value the
information you have provided and will be reading every word.

We also acknowledge that if you are an autistic person, a parent, or other family member of a child on the autism
spectrum, you will have shared in the survey insights from your own life, your experience, and your expertise. It is
likely that you will have been asked to do this many times before, and we warmly thank you for being willing to do so
again here, to help make the guideline the best it can be. We simply could not do this piece of important work,
without your insights. Thank you.

We look forward to sharing updates, and the Guideline in due course, via Autism CRC's website.

Sincerely,

Rhylee Sulek, Kandice Varcin, Nicole Dargue, Hannah Waddington, Emma Hinze, Rachelle Wicks, Veronica Frewer,
Libby Groves, Andrew Whitehouse, Emma Goodall, and David Trembath, on behalf of the Guideline Development
Group.

02/28/2023 11:21am projectredcap.org

 Update of the National Guideline for the Assessment and Diagnosis of Autism in
Australia

Appendix 6.1 Demographics survey – focus group

 Page 1
Focus Group Demographics

Thank you for for registering to participate in one of the online focus groups that we are running as part of the
update of the National Guideline for the assessment and diagnosis of autism in Australia.

We are interested to know a bit more about you so that we can present a de-identified summary in the updated
Guideline of who participated in the focus groups (e.g., the variety of people, where they were from). Almost all of
these questions are optional so that you can choose what information you would like to share about yourself.

While we do ask for your name and email address, this information will only be used for administrative purposes and
will not be published in any format

If you have any questions, please contact the project team: [email protected]

This study is being conducted by the Guideline Development Group and is approved by the Griffith University Human
Research Ethics Committee (GU Ref No: 2022/780).

First Name
__________________________________

Surname
__________________________________

Email you used to register for the focus groups

__________________________________

Please indicate which perspective(s) you bring to the I am an autistic person/person on the autism
focus group: (select all that apply) spectrum
I am a parent, caregiver, or family member of a
person on the autism spectrum
I am a practitioner involved in the assessment
and/or diagnosis of autism
Other

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 Page 2

As you selected that you are a practitioner, please Aboriginal and Torres Strait Islander Health
indicate your profession Worker or Health Practitioner
Aboriginal and Torres Strait Islander Health
Advocate
Accredited practising dietitian
Audiologist
Board Certified Behaviour Analyst
Childcare worker
Dentist
Developmental educator
Educator (early childhood)
Educator (primary school)
Educator (high school)
Gastroenterologist
General practitioner
Geneticist
Neurologist
Nurse
Nurse practitioner
Occupational therapist
Ophthalmologist
Optometrist
Paediatrician
Physiotherapist
Psychiatrist
Psychologist
Sleep and respiratory physician
Social worker
Speech pathologist
Support worker
Other

As you selected 'other' for your profession, please

specify here:
__________________________________________

As you selected 'Other' for the perspective that you

bring to the focus groups, please specify:
__________________________________________

With which gender do you identity? Female

Male
Non-binary
Prefer not to say
Other

Which State or Territory of Australia do you currently Australian Capital Territory

reside in? New South Wales
Northern Territory
Queensland
South Australia
Tasmania
Victoria
Western Australia
Outside of Australia

Do you identify as Aboriginal and/or Torres Strait No

Islander? Yes, Aboriginal
Yes, Torres Strait Islander
Yes, both Aboriginal and Torres Strait Islander

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 Page 3

Have you read or used the previously published Yes

'National Guideline for the Assessment and Diagnosis No
of Autism Spectrum Disorders in Australia' (2018)?

What is your age? 18-25 years

26 years or older

You indicated that you are an 'Autistic person/person Yes

on the autism spectrum'. Are you happy to tell us No
about your diagnosis?

Which of the following best describes your I have been given a formal diagnosis of autism (or
circumstances? a related diagnosis e.g., Asperger's,
Pervasive-Developmental Disorder) by one or more
qualified health practitioners (e.g.,
paediatrician, clinical psychologist, psychiatrist)
I am currently being assessed for a possible
diagnosis of autism
I self-identify as autistic/person on the autism
spectrum, but have not been given a formal
diagnosis by a health practitioner

At what age did you receive a formal diagnosis of

autism? __________________________________

What was your diagnosis (e.g., Autism Spectrum

Disorder, Asperger's)? __________________________________

At the time you were diagnosed, what level of support Level 1 - Required support
did you need to participate in everyday activities? Level 2 - Required substantial support
Level 3 - Required very substantial support
I am unsure
I would prefer not to say

What level of support do you currently need to Level 1 - Requires support

participate in everyday activities? Level 2 - Requires substantial support
Level 3 - Required very substantial support
I am unsure
I would prefer not to say

You indicated that you are a parent, caregiver, or Yes

family member of an autistic person/person on the No
autism spectrum: are you happy to tell us more about
your family member on the autism spectrum?

Please note: we will ask you to focus on just one

family member at a time.

What is your relation to this particular family

member? (e.g., parent, caregiver, sibling, __________________________________
grandparent)

What is the age of this particular family member? 0-12 years (child)
13-17 years (adolescent)
18-25 years (young adult)
26 years or older (adult)

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 Page 4

Has your family member received a formal diagnosis of Yes

autism (or a related condition e.g., Asperger's, No
Pervasive Developmental Disorder)?

At what age was your family member diagnosed?

__________________________________

At the time your family member was diagnosed, what Level 1 - Required support
level of support did they need to participate in Level 2 - Required substantial support
everyday activities? Level 3 - Required very substantial support
I am unsure
I would prefer not to say

How did you decide on this level? It was the level the practitioner assigned when
they were diagnosed
It is the level I think was appropriate at the
time they were diagnosed

Do you wish to provide details for another family Yes

member on the autism spectrum? No

What is your relation to this particular family

member? (e.g., parent, caregiver, sibling, __________________________________
grandparent)

What is the age of this particular family member? 0-12 years (child)
13-17 years (adolescent)
18-25 years (young adult)
26 years or older (adult)

Has your family member received a formal diagnosis of Yes

autism (or a related condition e.g., Asperger's, No
Pervasive Developmental Disorder)?

At what age was your family member diagnosed?

__________________________________

At the time your family member was diagnosed, what Level 1 - Required support
level of support did they need to participate in Level 2 - Required substantial support
everyday activities? Level 3 - Required very substantial support
I am unsure
I would prefer not to say

How did you decide on this level? It was the level the practitioner assigned when
they were diagnosed
It is the level I think was appropriate at the
time they were diagnosed

Do you wish to provide details for another family Yes

member on the autism spectrum? No

What is your relation to this particular family

member? (e.g., parent, caregiver, sibling, __________________________________
grandparent)

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 Page 5

What is the age of this particular family member? 0-12 years (child)
13-17 years (adolescent)
18-25 years (young adult)
26 years or older (adult)

Has your family member received a formal diagnosis of Yes

autism (or a related condition e.g., Asperger's, No
Pervasive Developmental Disorder)?

At what age was your family member diagnosed?

__________________________________

At the time your family member was diagnosed, what Level 1 - Required support
level of support did they need to participate in Level 2 - Required substantial support
everyday activities? Level 3 - Required very substantial support
I am unsure
I would prefer not to say

How did you decide on this level? It was the level the practitioner assigned when
they were diagnosed
It is the level I think was appropriate at the
time they were diagnosed

Do you wish to provide details for another family Yes

member on the autism spectrum? No

What is your relation to this particular family

member? (e.g., parent, caregiver, sibling, __________________________________
grandparent)

What is the age of this particular family member? 0-12 years (child)
13-17 years (adolescent)
18-25 years (young adult)
26 years or older (adult)

Has your family member received a formal diagnosis of Yes

autism (or a related condition e.g., Asperger's, No
Pervasive Developmental Disorder)?

At what age was your family member diagnosed?

__________________________________

At the time your family member was diagnosed, what Level 1 - Required support
level of support did they need to participate in Level 2 - Required substantial support
everyday activities? Level 3 - Required very substantial support
I am unsure
I would prefer not to say

How did you decide on this level? It was the level the practitioner assigned when
they were diagnosed
It is the level I think was appropriate at the
time they were diagnosed

Do you wish to provide details for another family Yes

member on the autism spectrum? No

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 Page 6

What is your relation to this particular family

member? (e.g., parent, caregiver, sibling, __________________________________
grandparent)

What is the age of this particular family member? 0-12 years (child)
13-17 years (adolescent)
18-25 years (young adult)
26 years or older (adult)

Has your family member received a formal diagnosis of Yes

autism (or a related condition e.g., Asperger's, No
Pervasive Developmental Disorder)?

At what age was your family member diagnosed?

__________________________________

At the time your family member was diagnosed, what Level 1 - Required support
level of support did they need to participate in Level 2 - Required substantial support
everyday activities? Level 3 - Required very substantial support
I am unsure
I would prefer not to say

How did you decide on this level? It was the level the practitioner assigned when
they were diagnosed
It is the level I think was appropriate at the
time they were diagnosed

You indicated that you are a practitioner: are you Yes

happy to tell us more about your experience with No
assessment and/or diagnosis of autism?

How are you currently involved in assessment and/or I refer individuals with possible autism for
diagnosis of autism? (select all that apply) assessment
I conduct assessments that are relevant to
considering an autism diagnosis
I conduct assessments and diagnose autism
I provide services to individuals once they have
received an autism diagnosis
Other

As you selected 'Other' please specify how you are

involved in assessment and/or diagnosis of autism?
__________________________________________

How many years of experience do you have in the

assessment and/or diagnosis of autism? __________________________________

Please use the year you started and the year you
finished/present time to calculate this. For example,
if you started being involved in assessment and/or
diagnosis in 2018, and are still involved currently
(2022), you would answer 4 years, even if there were
some career breaks.

Which of the following are you (or have you been) Medical evaluation
involved in, as part of your practice in the Assessment of functioning
assessment and/or diagnosis of autism (select all that Single clinician diagnostic evaluation
apply) Consensus team diagnostic evaluation
None of these

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 Page 7

How many years of experience do you have working in

clinical practice with autistic people/people on the __________________________________
autism spectrum?

Please use the year you started and the year you
finished/present time to calculate this. For example,
if you started working with individuals on the autism
spectrum in 2018, and are still involved currently
(2022), you would answer 4 years, even if there were
some career breaks.

Across your career to date, what age groups have you 0-12 years (children)
provided autism assessment and/or diagnostic services 13-17 years (adolescents)
to? 18-25 years (young adults)
26 years and older (adults)
I do not provide assessment and diagnostic
services to people on the autism spectrum

In which of the following service settings do you Private, including non-government organisations
practice? (select all that apply) Government organisations (e.g., hospital and
health services)

In which of the following settings do you currently Hospital (inpatient/outpatient)

provide assessment and/or diagnostic services? (select Community clinic (including private practice)
all that apply) University clinic (includes providing services as
part of student training and research)
None
Other

As you selected 'Other', please specify the

setting(s): __________________________________

03/10/2023 2:45pm projectredcap.org

 Update of the National Guideline for the Assessment and Diagnosis of Autism in
Australia

Appendix 6.2 Focus group PowerPoint presentation

 Update of the National Guideline for
Assessment and Diagnosis of Autism in
Australia

Community Consultation: Focus Groups

Acknowledgement of Country
Overview
This focus group is being
• Housekeeping recorded so that we can
• Guideline update transcribe and analyse the
information the group provides.
• What?
• Why? The recording will not be used
for any other purpose.
• Who is involved?
We will not use anyone’s
• Understanding and expectations for focus name or other identifying
groups information when share the
updated National Guideline.
Housekeeping
• Introducing the facilitators
• Schedule
• Introduction and house keeping (15 mins)
• Focus questions (90 mins)
• Summary and next steps (15 mins)
• Video/audio/chat options
• Tech Support
• Key ethical considerations (consent, privacy, seeking support)
Updating the National Guideline
What is happening?

We are completing a planned, periodic update of the National Guideline

for Assessment and Diagnosis in Australia.

This will involve:

1. Reviewing the latest research evidence (published since 2018)
2. Community consultation involving online survey and focus groups
3. Public consultation on the updated Guideline (2023)
Updating the National Guideline
Why is it happening?

We need to ensure that the Guideline continues to be relevant to

autistic people, their families, and practitioners who are involved in
assessment and diagnosis.

We need to ensure that the Guideline continues to be evidence-based,

reflecting the best available evidence and community preferences and
priorities, and as expected by the National Health and Medical Research
Council.
Updating the National Guideline
Who is involved:

The Guideline Development Group leads the process.

A Reference Group representing peak bodies and organisations provides

feedback.

All members of the autistic and autism communities are warmly invited and
encouraged to contribute to the community consultation and public consultation.
How will my involvement today help?
We warmly invite We will write down
We will pose a you to share your everything everyone
series of questions insights, views, and says (including a
experiences copy of the chat)

It is these themes
We will then review
that will then inform
all of the information
the update of the
and identify themes
Guideline
How will my involvement today help?
We warmly invite We will write down
We will pose a you to share your everything everyone
series of questions insights, views, and says (including a
experiences copy of the chat)

It is these themes
We will then review
that will then inform
all of the information
the update of the
and identify themes
Guideline
How will my involvement today help?
We will write down
We warmly invite you
everything everyone
We will pose a series to share your
says (including
of questions insights, views, and
making a copy of the
experiences
online chat)

It is these themes
We will then review
that will then inform
all of the information
the update of the
and identify themes
Guideline
How will my involvement today help?
We warmly invite We will write down
We will pose a you to share your everything everyone
series of questions insights, views, and says (including a
experiences copy of the chat)

It is these themes
We will then review
that will then inform
all of the information
the update of the
and identify themes
Guideline
How will my involvement today help?
We warmly invite We will write down
We will pose a you to share your everything everyone
series of questions insights, views, and says (including a
experiences copy of the chat)

It is these themes
We will then review
that will then inform
all of the information
the update of the
and identify themes
Guideline
What if I have questions about the Guideline?

Website: Email:
https://www.autismcrc.c [email protected]
om.au/access/national- m.au
guideline
Understanding and Expectations

You have volunteered your time We are privileged to have people We want to ensure that everyone
because you want to make a with diverse views and has the opportunity contribute and
difference experiences joining feels safe and supported
A positive and productive focus group
• As facilitators we will ensure:
• On topic
• On time
• Everyone has a chance to share

• As facilitators, we are here to listen, not to comment or answer questions

• As participants, we ask that you please:

• Stay on topic
• Keep your comments relatively brief, so that more people have a chance to talk/share
• Help us create a safe and supportive space, including respecting other people’s views and experiences
• Avoid naming specific people, practitioners, and service providers
• Maintain the privacy of others during and following the group
Please keep in mind…
This is a Guideline for practitioners.

This means we want to focus our discussion today on what practitioners can do to help ensure assessment
and/or diagnosis is timely, accurate, and supportive.

There are many related issues, that are very important, but that are beyond the scope of the Guideline. These
include:
• The cost of assessments, and how they should be funded.
• The need for more practitioners, including in regional and remote areas.
• The different roles of State and Federal Government departments and agencies (e.g., health, education,
National Disability Insurance Agency)

We warmly encourage everyone to focus on the role of practitioners, to make the best use of the time
available today.
The questions we will ask
In your experience,

1. What is, or was, good about the way assessment and/or diagnosis happens in Australia?

2. What is, or was, bad about the way assessment and/or diagnosis happens in Australia?

3. What would like to see change in the way assessment and/or diagnosis happens in Australia?
• Thinking to the future
• What principles are important for the assessment and diagnosis process?
• What can practitioners do to help ensure the safety and wellbeing of individuals and their
families?
In your experience,

What is, or was, good about the way assessment

and/or diagnosis happens in Australia?
In your experience,

What is, or was, bad about the way assessment

and/or diagnosis happens in Australia?
What would like to see change in the way assessment and/or
diagnosis happens in Australia?

Thinking to the future:

• What principles are important for the assessment and diagnosis
process?
• What can practitioners do to help ensure the safety and
wellbeing of individuals and their families?
Summary and Next Steps
• Reflections on discussion
• Next steps
• Acknowledgements
autismcrc.com.au