755522

research-article2018
AUT0010.1177/1362361318755522AutismBölte et al.

Original Article

Autism

The Gestalt of functioning in autism 2019, Vol. 23(2) 449­–467

© The Author(s) 2018

spectrum disorder: Results of the Article reuse guidelines:

international conference to develop final sagepub.com/journals-permissions

https://doi.org/10.1177/1362361318755522
DOI: 10.1177/1362361318755522
journals.sagepub.com/home/aut
consensus International Classification of
Functioning, Disability and Health core sets

Sven Bölte1,2, Soheil Mahdi1,2, Petrus J de Vries3, Mats Granlund4,

John E. Robison5, Cory Shulman6, Susan Swedo7, Bruce Tonge8,
Virginia Wong9, Lonnie Zwaigenbaum10 , Wolfgang Segerer11
and Melissa Selb11,12

Abstract
Autism spectrum disorder is associated with diverse social, educational, and occupational challenges. To date, no
standardized, internationally accepted tools exist to assess autism spectrum disorder–related functioning. World Health
Organization’s International Classification of Functioning, Disability and Health can serve as foundation for developing
such tools. This study aimed to identify a comprehensive, a common brief, and three age-appropriate brief autism
spectrum disorder Core Sets. Four international preparatory studies yielded in total 164 second-level International
Classification of Functioning, Disability and Health candidate categories. Based on this evidence, 20 international autism
spectrum disorder experts applied an established iterative decision-making consensus process to select from the
candidate categories the most relevant ones to constitute the autism spectrum disorder Core Sets. The consensus
process generated 111 second-level International Classification of Functioning, Disability and Health categories in the
Comprehensive Core Set for autism spectrum disorder—one body structure, 20 body functions, 59 activities and
participation categories, and 31 environmental factors. The Common Brief Core Set comprised 60 categories, while the
age-appropriate core sets included 73 categories in the preschool version (0- to 5-year-old children), 81 in the school-
age version (6- to 16-year-old children and adolescents), and 79 in the older adolescent and adult version (⩾17-year-old
individuals). The autism spectrum disorder Core Sets mark a milestone toward the standardized assessment of autism
spectrum disorder–related functioning in educational, administrative, clinical, and research settings.

Keywords
autism spectrum disorder, assessment, consensus conference, disability, functioning, International Classification of
Functioning, Disability and Health core sets

Introduction
Autism spectrum disorder (ASD) is an early onset neu- communication and interaction, alongside restricted and
rodevelopmental condition characterized by altered social stereotyped behaviors and interests, causing significant

  9The University of Hong Kong, China

  1Karolinska Institutet, Sweden 10University of Alberta, Canada
  2Stockholm County Council, Sweden 11Swiss Paraplegic Research, Switzerland
  3University of Cape Town, South Africa 12ICF Research Branch, Switzerland
  4Jönköping University, Sweden
  5U.S. Department of Health & Human Services, USA Corresponding author:
  6The Hebrew University of Jerusalem, Israel Sven Bölte, Center of Neurodevelopmental Disorders (KIND), Division
  7National Institute of Mental Health, USA of Neuropsychiatry, Department of Women’s and Children’s Health,
  8Monash University, Australia Karolinska Institutet, Gävlegatan 22 B, Floor 8, 113 30 Stockholm, Sweden.
Email: [email protected]
450 Autism 23(2)

functional impairment (American Psychiatric Association

(APA), 2013). The estimated prevalence of ASD is 1%–
2% (Baxter et al., 2015; Centers for Disease Control and
Prevention (CDC), 2016; Idring et al., 2015). Individuals
with ASD face challenges in education (Levy and Perry,
2011), employment (Howlin et al., 2013), social relation-
ships (Schmidt et al., 2015), self-care (Du et al., 2015), and
domestic life (Fortuna et al., 2015). Physical (Cashin et al.,
2016) and psychiatric (Joshi et al., 2013; Salazar et al.,
2015) comorbidity is also common in ASD, and premature
death of individuals with ASD is more likely than in the
general population (Hirvikoski et al., 2016). Moreover, life
satisfaction is low in many individuals with ASD (Jonsson
et al., 2017; Van Heijst and Geurts, 2015). Nevertheless,
there is a considerable variation in individual levels of
functioning and consequent outcomes. Factors known to
contribute to variable outcomes in ASD include intelli-
gence (Kirby et al., 2016), socio-demographic background
Figure 1.  Example of the hierarchically organized category
(Fountain et al., 2012), and accessibility to services such structure of the ICF.
as evidence-based treatments (Dawson et al., 2012; Fein
et al., 2017) and family support (Woodman et al., 2015).
While ASD has traditionally been viewed predominantly organized “categories” with up to three levels of increas-
from a phenomenological perspective, research findings ing detail. This is demonstrated by an example from the
endorse the necessity to appraise ASD from a broader per- body functions component in Figure 1.
spective than its current behavioral definition, taking into Since 2007, a Child and Youth version of the ICF, the
account personal, social, and environmental factors of ICF-CY, has been available that additionally captures
health-related functioning. The bio-psycho-social model functional characteristics and environments of developing
of the World Health Organization (WHO) International individuals (WHO, 2007). This version of the ICF encom-
Classification of Functioning, Disability and Health (ICF) passes all the categories of the reference version of the ICF
provides a comprehensive, integrated framework for func- plus additional ones for children and youth, comprising
tional ability and disability to address this need (WHO, 1685 categories: 531 in body functions component, 329
2001). Complementary to the Diagnostic and Statistical body structures, 552 activities and participation, and 273
Manual of Mental Disorders (5th ed.; DSM-5; APA, 2013) environmental factors. For the development of the ICF
and the International Classification of Diseases–Tenth core sets for ASD described here, we therefore selected to
Revision (ICD-10) (WHO, 1992), both of which classify use the more comprehensive child and youth version.
health conditions and focus on the biomedical elements of The use of ICF may foster an approach of managing
disability, the ICF promotes a more holistic perspective of ASD that emphasizes individual abilities, disabilities, and
disability by systemizing functioning and factors that the context that has an impact on the individual’s function-
influence everyday life outcomes (WHO, 2001). The ICF ing. This approach is potentially meaningful for several
consists of two parts—(a) functioning and disability and reasons (Bölte, 2009; Escorpizo et al., 2013). First, not only
(b) contextual factors. Functioning and disability take into is functioning often perceived as less stigmatizing than psy-
account body functions (i.e. physiological and mental chopathology or diagnosis, but problems in functioning are
functions of the body system), body structures (i.e. ana- also often the reason for initial referral to services and focus
tomical parts of the body), activities (i.e. execution of for interventions rather than psychopathology itself. Given
tasks), and participation (i.e. involvement in life situa- this, aspects of functioning are likely to be more tangible
tions). Contextual factors include environmental factors and meaningful than psychopathology/diagnosis to indi-
(i.e. factors not inherent to the individual, for example, viduals with ASD, their families, and society as a whole.
family, work, recreational opportunity, government agen- Aspects of functioning are also well suited to describe an
cies, laws, societal attitudes) as well as personal factors individual’s real-life challenges and to guide individual
(i.e. personal experience, race, gender, age, educational intervention planning (Castro and Pinto, 2013). A func-
level, coping styles). Although personal factors are part of tional lens may enable better calculation of health-related
the ICF framework, these are currently not classified in the service costs (Hopfe et al., 2017; Schraner et al., 2008).
nomenclature given their large cultural and social variabil- Finally, individual descriptions of functional abilities and
ity (WHO, 2001). All other components of the ICF are disabilities may also enhance communication between
structured into “chapters” that comprise hierarchically individuals on the autism spectrum, their environment, and
Bölte et al. 451

experts. The ICF highlights the influence of the environ- Preparatory studies
ment, stressing its positive and negative role in influencing
outcome. Recognizing that environmental factors influence The study designs and methodologies were different in
an individual’s outcome provides an opportunity to change each of the preparatory studies, but candidate categories
those factors toward outcome improvement. It is also were identified similarly. After extracting functioning con-
important to note that the ICF offers a framework to assess cepts from the respective datasets collected in each study,
strengths, rather than just disability. concepts were linked to the ICF categories using estab-
There are also some challenges to applying the ICF— lished ICF linking rules (Cieza et al., 2005) and a fre-
particularly its continued limited prominence and accept- quency analysis was done. The most frequently reported
ance by professionals and researchers, and its exhaustive categories in each study were included in the list of candi-
comprehensiveness which makes it difficult and time-con- date categories for that study. In the systematic literature
suming for daily use. In practice, only a fraction of the ICF review, functioning data were gathered from 71 ASD-
categories is needed when evaluating functioning of indi- related outcome studies that were identified through sys-
viduals with specific health conditions. To address these tematic searches on scientific databases (e.g. Medline,
concerns, the development of ICF Core Sets was initiated PubMed, CINAHL) (De Schipper et al., 2015). The inter-
(Selb et al., 2015) to generate shortlists of ICF categories national survey of ASD experts collected the views and
pertinent to specific health conditions. opinions of 225 experts across 10 professional disciplines
The development of ICF Core Sets involves a rigorous from 43 countries and all WHO world regions (De Schipper
scientific procedure aimed at reducing the number of ICF et al., 2016). The qualitative study involved focus group
categories to those that are most significant for a given discussions and semi-structured interviews of individuals
condition. This procedure comprises four international, with ASD, family members, and professional caregivers
multi-perspective preparatory studies: systematic litera- from 19 stakeholder groups in five countries from five
ture review, an expert survey, a qualitative study and a WHO world regions (Mahdi et al., 2017a). Unlike the
clinical study, and a multidisciplinary and expertise-based other preparatory studies, employing the ICF linking rules
decision-making and consensus (conference) process was not necessary to identify the candidate categories in
(Selb et al., 2015). the clinical cross-sectional study (Mahdi et al., 2017b). In
ICF Core Sets have been developed for diagnoses this study, the extended ICF checklist that clinicians and
such as cerebral palsy (Schiariti et al., 2015), depression clinical researchers used to gather data from 122 individu-
(Cieza et al., 2004), and bipolar disorder (Ayuso-Mateos als with ASD recruited at 11 clinical sites in 10 countries in
et al., 2013), but not yet for any DSM-5 defined neurode- four different WHO world regions already defined an ICF
velopmental disorders. For this reason, the development category for each checklist item. A detailed description of
of standardized ICF Core Sets for ASD (Bölte et al., each study can be found in separate scientific publications.
2014) has been initiated. The objective of this article is to Ethical approval was obtained for each respective prepara-
provide a summary of the results of the four preparatory tory study and informed consent was acquired (both in
studies and the international consensus conference, written and verbal form) from each participant who took
where the first versions of the ICF Core Sets for ASD part in the preparatory studies.
were developed.
Consensus conference
Method Participants.  To generate the first ICF Core Sets for ASD,
international experts were invited to participate in a 3-day
Process iterative decision-making process at a consensus confer-
The first version of the ICF Core Sets for ASD was decided ence that took place in Stockholm (Sweden) in September
at the consensus conference by a multi-professional and 2016. Experts had to meet the following inclusion criteria
international group of participants, who based their deci- to be eligible for conference participation: (a) a profes-
sion on their expertise and on evidence generated in four sional background in childhood disability, which included
preparatory studies: a systematic literature review, expert psychiatry, psychology, psychotherapy, social work, spe-
survey, qualitative study, and clinical study. Each prepara- cial education, speech-language pathology, nursing, occu-
tory study produced a set of candidate categories, that is, a pational therapy, pediatrics, and physiotherapy; (b) at least
selection of ICF categories that represented the different 5 years of working experience with infants, children, ado-
perspectives captured in each of the studies. Throughout lescents, or adults with ASD; and (c) fluency in English.
the decision-making and consensus process during the The nomination of experts was predominately made by the
conference, the participants were reminded to consider Project Steering Committee, who were a group of key
the preparatory studies results in their discussions and in opinion leaders in the field of ASD or experts in the ICF.
the final decision. The Steering Committee included clinicians, educators,
452 Autism 23(2)

researchers, and self-advocates from all six WHO world Consistent with previous ICF Core Set projects (Ayuso-
regions (see “Acknowledgements” and authors). To Mateos et al., 2013; Schiariti et al., 2015), consensus
achieve a broad representation of professional back- agreement for automatic inclusion of individual categories
grounds and WHO world regions, Steering Committee in the Comprehensive Core Set for ASD in Votes A and B
members were asked to nominate experts who matched was set at ⩾75%, meaning that at least three-fourths of the
their own professional field and WHO world region. In experts had to vote in favor of including a category for it to
total, 29 invitations were sent to international ASD experts be part of the comprehensive set. Categories that received
to participate in the consensus conference. 40% positive votes or fewer were directly excluded from
the comprehensive set. Individual candidate categories
Procedure.  The consensus conference followed an itera- were considered “ambiguous” if more than 40% but less
tive standardized decision-making and consensus (vot- than 75% of the experts voted to include that category.
ing) process established for ICF Core Set development Ambiguous categories were carried over to the next ses-
with an adaptation for age-specific groupings (Figure 2) sion for re-discussion and a new voting round. Between
(Selb et al., 2015) and employed a specialized data analy- the WG sessions (or Votes A and B), a plenary session took
sis program in MS Office Access. This program displayed place to review Vote A results and to enable the partici-
the candidate categories from each preparatory study, pants to present arguments in favor of or against the
including category descriptions and corresponding fre- ambiguous categories. Ambiguous categories that
quencies, tracked the expert votes, and generated sum- remained after Vote B were re-discussed in the subsequent
mary results that informed the subsequent steps of the plenary session, during which Vote C took place. In Vote
voting procedure. In accordance with previous ICF Core C, a majority (>50%) of the participants had to vote to
Set projects, a Comprehensive and a Brief (Common) include the ambiguous category for it to be part of the
ICF Core Set were developed (Cieza et al., 2004; Schi- Comprehensive Core Set.
ariti et al., 2015). In addition, based on a decision made Up to this point, the categories that were already
by the Steering Committee, three age-specific brief sets included in the Comprehensive Core Set for ASD were at
were also developed: a preschool set (aged 0–5 years), a the second level. In Vote D, the experts were asked to
school-age set (aged 6–16 years), and an older adolescent decide whether these second-level categories were specific
and adult set for individuals 17 years old and older. The enough to describe the functioning of individuals with
iterative voting process comprised two stages which led ASD or “dive deeper,” that is, consider replacing the sec-
to the development of the comprehensive version of the ond-level category with the respective third- or fourth-
ICF Core Set for ASD (Stage 1), and the brief version level categories for more specificity. The latter would have
(Stage 2). Stage 1 was done by alternating discussions taken place in Vote E. Fewer than 50% of the experts voted
and voting in working group (WG) (Votes A and B) and for “dive deeper” (n = 16; 20%) and Vote E was therefore
plenary sessions (Votes C to E). not used. Completion of Stage 1 consequently led to the
For the WG discussions and voting of Votes A and B, Comprehensive ICF Core Set for ASD.
the ASD experts were divided into three groups of six or Stage 2 marked the development of the Brief Common
seven participants. Participants remained in the same WG Set and the three age-specific brief sets, involving a two-
throughout Stage 1. In the construction of the WGs, efforts round ranking and cut-off exercise for each set. In deciding
were made to ensure a balanced representation of profes- on the ranking and cut-off, the experts were reminded that
sional disciplines, WHO world regions, and gender. A WG the brief sets should comprise the fewest number of cate-
leader was appointed for each group to moderate the WG gories possible while still capturing the most essential.
discussions and voting procedure. Each WG also had two In the first round of developing the Common Brief Set,
assistants who presented the candidate categories from the each expert received a handout with all the categories from
preparatory studies, took discussion notes, and entered the the Comprehensive Core Set for ASD organized according
voting results in the data analysis program. The WG leader to ICF component, and were instructed to rank the top 10
fostered discussion on the pros and cons of including indi- most essential categories for each ICF component from 1
vidual candidate categories, and encouraged the experts to to 10, with “1” being most essential. The ranking results of
consider not only the preparatory study results, their own each expert were analyzed using descriptive statistics and
expertise in ASD, but also country and cultural applicabil- combined to generate a common ranking. After each rank-
ity. Since the WG leader was allowed to vote, he or she ing round, the common ranking was presented and the par-
was instructed to maintain objectivity and ensure that all ticipating experts had the opportunity to discuss reasons
opinions were heard before voting. To avoid leader bias, for their ranking decision and to argue for the inclusion of
the WG leader was also instructed to wait with giving selected categories. The latter was important, since they
feedback until after several members have already pro- were required after both ranking rounds to choose a cut-
vided their comments. The voting was conducted openly off, that is, the number of categories per ICF component
by a show of hands. that would be crucial to include in the Brief Common Set.
Bölte et al. 453

Figure 2.  The iterative decision-making process at the consensus meeting.

454 Autism 23(2)

The same ranking and cut-off procedure was repeated for functions (n = 15, 14%), d1 Learning and applying knowl-
each of the age-specific brief sets. However, the starting edge (n = 15, 14%), and e5 Services, systems, and policies
list of categories did not include the categories of the (n = 9, 8%).
Common Brief Set, since these were automatically
included in each of the age-specific brief sets. Categories Common Brief ICF Core Set for individuals with
that were voted into all of the three age-specific brief sets
were included retrospectively in the Brief Common Set.
ASD
Table 4 lists the 60 second-level ICF categories that were
included in the Common Brief Set for ASD. The 60 cate-
Results gories comprised the 46 categories that were included fol-
The systematic literature review identified 80 (De Schipper lowing the initial ranking and cut-off process and an
et al., 2015), the international survey 77 (De Schipper additional 14 categories that were found to be common in
et al., 2016), the qualitative study 110 (Mahdi et al., all of the age-specific brief sets. The Common Brief Set
2017a), and the clinical cross-sectional study 133 second- categories came from the environmental factors compo-
level candidate categories (Mahdi et al., 2017b). Taken nent (n = 23, 38%), activities and participation (n = 19,
together, the four preparatory studies identified 164 unique 32%), and body functions (n = 18, 30%). The most fre-
second-level ICF candidate categories. The majority of the quently covered chapters in the Common Brief Set were
candidate categories came from the activities and partici- b1 Mental functions (n = 15, 25%), e3 Support and rela-
pation component (k = 78, 48%), followed by body func- tionships (n = 7, 12%), e4 Attitudes (n = 6, 10%), and e5
tions (k = 43, 26%), environmental factors (k = 39, 24%), Services, systems, and policies (n = 6, 10%).
and body structures (k = 4, 2%). Table 1 summarizes the
second-level candidate ICF categories that were identified
across the four preparatory studies.
Brief ICF Core Set for preschool age children
(0–5 years)
Consensus conference participants Table 5 summarizes the categories that were included in the
brief set for preschool age group of 0–5 years. This specific
Of the 29 experts who were invited to participate in the Brief Set comprised 73 second-level ICF categories, of which
international consensus conference, four declined due to 60 were from the Brief Common Set. Twenty-nine categories
other commitments and five did not respond to the invita- (40%) were from the activities and participation component,
tion. In total, 20 experts (14 females and 6 males) from 11 25 (34%) were environmental factors, and 19 (26%) were
countries (Germany, India, Israel, Japan, Mexico, The body functions. All five chapters of the environmental factors
Netherlands, Saudi Arabia, South Africa, Sweden, United component were covered, while the activities and participa-
Kingdom, and United States) representing all WHO world tion did not cover d4 Mobility and d6 Domestic life. Enclosed
regions participated in the consensus conference (see body functions consisted mainly of mental functions. The
“Acknowledgements”). Table 2 summarizes the participat- three most represented chapters were b1 Mental functions
ing experts by WG, gender, professional background, (n = 15, 21%), d1 Learning and applying knowledge (n = 8,
country, and WHO world region. 11%), and e3 Support and relationships (n = 7, 10%).

Comprehensive ICF Core Set for individuals Brief ICF Core Set for school-age children and
with ASD adolescents (6–16 years)
Table 3 shows the categories included in the Comprehensive Table 6 displays the categories that were included in the
ICF Core Set for ASD. Of the 164 second-level candidate Brief ICF Core Set for school-age individuals (6–16 years).
categories that were identified in the preparatory studies, It contains 81 categories (including the 60 Brief Common
111 (68%) were included in the Comprehensive Core Set. Set categories), with the categories distributed across the
A large majority of the categories in the Comprehensive activities and participation component (n = 36, 45%), envi-
Core Set were from the activities and participation compo- ronmental factors (n  = 
27, 33%), and body functions
nent (n = 59, 53%), followed by environmental factors (n = 18, 22%), whereby all five environmental factor chap-
(n = 31, 28%) and body functions (n = 20, 18%). Only one ters were represented. Except for d6 Domestic life, all the
body structure (structure of the brain) (1%) was included. activities and participation chapters were covered.
All nine chapters from the activities and participation com- Regarding body functions, mental functions and physical
ponent and all five chapters of the environmental factors aspects of the body, such as motor skills and voice func-
were represented in the Comprehensive Core Set. Most of tions, were included in this brief set. The three most repre-
the body function categories were mental functions, fol- sented chapters in this set were b1 Mental functions (n = 15,
lowed by aspects of physical and sensory functions. The 19%), d1 Learning and applying knowledge (n = 13, 16%),
three most frequently represented chapters were b1 Mental and e3 Support and relationships (n = 8, 10%).
Bölte et al. 455

Table 1.  The candidate ICF categories from each respective preparatory study.

Second-level ICF category Systematic review Expert survey Qualitative study Clinical study
Body function  
b110 Consciousness functions X  
b114 Orientation functions X X X
b117 Intellectual functions X X X X
b122 Global psychosocial functions X X X X
b125 Dispositions and intra-personal functions X X X X
b126 Temperament and personality functions X X X
b130 Energy and drive functions X X X X
b134 Sleep functions X X X X
b140 Attention functions X X X X
b144 Memory functions X X X X
b147 Psychomotor functions X X X X
b152 Emotional functions X X X X
b156 Perceptual functions X X X X
b160 Thought functions X X X X
b163 Basic cognitive functions X X X X
b164 Higher level cognitive functions X X X
b167 Mental functions of language X X X X
b172 Calculation functions X X
b176 Mental function of sequencing complex movements X  
b180 Experience of self and time functions X X X X
b210 Seeing functions X X X
b230 Hearing functions X X X
b235 Vestibular functions X X
b250 Taste function X X X
b255 Smell function X X X
b260 Proprioceptive function X  
b265 Touch function X X X
b270 Sensory functions related to temperature and other stimuli X X X
b280 Sensation of pain X X X
b310 Voice functions X
b320 Articulation functions X X
b330 Fluency and rhythm of speech functions X X X
b435 Immunological systemfunctions X
b455 Exercise tolerance functions X  
b510 Ingestion functions X  
b515 Digestive functions X  
b525 Defecation functions X X
b530 Weight maintenance functions X X
b730 Muscle power functions X
b735 Muscle tone functions X X
b760 Control of voluntary movement functions X X X X
b765 Involuntary movement functions X X X X
b770 Gait pattern functions X X X
Body structures
s110 Structure of brain X X  
s320 Structure of mouth X  
s540 Structure of intestine X  
s750 Structure of lower extremity X  
Activities and participation
d110 Watching X X
d115 Listening X
d130 Copying X X X X
(Continued)
456 Autism 23(2)

Table 1. (Continued)

Second-level ICF category Systematic review Expert survey Qualitative study Clinical study
d132 Acquiring information X X X
d134 Acquiring additional language X  
d137 Acquiring concepts X  
d140 Learning to read X X
d145 Learning to write X X
d150 Learning to calculate X
d155 Acquiring skills X  
d160 Focusing attention X X
d161 Directing attention X X X
d163 Thinking X X
d166 Reading X X X
d170 Writing X  
d172 Calculating X X X
d175 Solving problems X
d177 Making decisions X X X X
d210 Undertaking a single task X X X
d220 Undertaking multiple tasks X X X
d230 Carrying out daily routine X X X X
d240 Handling stress and other psychological demands X X X X
d250 Managing one’s own behavior X X X X
d310 Communicating with—receiving—spoken messages X X X X
d315 Communicating with—receiving—nonverbal messages X X X X
d330 Speaking X X X X
d331 Pre-talking X  
d335 Producing nonverbal messages X X X X
d345 Writing messages X  
d350 Conversation X X X X
d360 Using communication devices and techniques X X X
d410 Changing basic body position X  
d415 Maintaining a body position X  
d430 Lifting and carrying objects X X
d435 Moving objects with lower extremities X  
d440 Fine hand use X X X X
d445 Hand and arm use X  
d446 Fine foot use X X X
d450 Walking X  
d455 Moving around X X X
d465 Moving around using equipment X
d470 Using transportation X X X
d475 Driving X X X
d510 Washing oneself X X X X
d520 Caring for body parts X X X X
d530 Toileting X X X X
d540 Dressing X X X X
d550 Eating X X X X
d560 Drinking X X
d570 Looking after one’s health X X X X
d571 Looking after one’s safety X X X
d620 Acquisition of goods and services X X
d630 Preparing meals X X X
d640 Doing housework X X X
d650 Caring for household objects X  
d660 Assisting others X X
Bölte et al. 457

Table 1. (Continued)

Second-level ICF category Systematic review Expert survey Qualitative study Clinical study
d710 Basic interpersonal interactions X X X X
d720 Complex interpersonal interactions X X X X
d730 Relating with strangers X
d740 Formal relationships X X
d750 Informal social relationships X X X X
d760 Family relationships X X X
d770 Intimate relationships X
d810 Informal education X
d820 School education X X X
d825 Vocational training X  
d830 Higher education X  
d845 Acquiring, keeping, and terminating a job X X X X
d850 Remunerative employment X X X
d860 Basic economic transactions X X
d865 Complex economic transactions X  
d870 Economic self-sufficiency X X
d880 Engagement in play X X X
d910 Community life X X X
d920 Recreation and leisure X X X X
d930 Religion and spirituality X
d940 Human rights X X
d950 Political life and citizenship X
Environmental factors
e110 Products or substances for personal consumption X X
e115 Products and technology for personal use in daily living X X X
e120 Products and technology for personal indoor and X
outdoor mobility and transportation
e125 Products and technology for communication X X X
e130 Products and technology for education X  
e150 Design, construction, and building products and X
technology of buildings for public use
e165 Assets X  
e225 Climate X
e240 Light X X X
e250 Sound X X X
e260 Air quality X  
e310 Immediate family X X X
e315 Extended family X
e320 Friends X X
e325 Acquaintances, peers, colleagues, neighbors, and X X
community members
e330 People in positions of authority X X
e340 Personal care providers and personal assistants X X X
e355 Health professionals X X X
e360 Other professionals X X X
e410 Individual attitudes of immediate family members X X X
e415 Individual attitudes of extended family members X  
e420 Individual attitudes of friends X
e425 Individual attitudes of acquaintances, peers, X X X
colleagues, neighbors, and community members
e430 Individual attitudes of people in positions of X  
authority
(Continued)
458 Autism 23(2)

Table 1. (Continued)

Second-level ICF category Systematic review Expert survey Qualitative study Clinical study
e440 Individual attitudes of personal care providers and X
personal assistants
e450 Individual attitudes of health professionals X X
e455 Individual attitudes of other professionals X X
e460 Societal attitudes X X X
e465 Social norms, practices, and ideologies X X X
e525 Housing services, systems, and policies X
e535 Communication services, systems, and policies X
e540 Transportation services, systems, and policies X
e550 Legal services, systems, and policies X X
e560 Media services, systems, and policies X  
e570 Social security services, systems, and policies X X
e575 General social support services, systems, and policies X X X
e580 Health services, systems, and policies X X X
e585 Education and training services, systems, and policies X X X
e590 Labor and employment services, systems, and policies X X X

ICF: International Classification of Functioning, Disability and Health.

Table 2.  Composition of the working groups.

WG 1 WG 2 WG3 Gender Profession Country WHO region

1 Female OT India SEARO
  1 Female OT South Africa AFRO
  1 Female OT United Kingdom EURO
1 Male PT Germany EURO
1 Female PedMD Sweden EURO
  1 Male PsychMD Mexico AMRO
  1 Male PsychMD South Africa AFRO
1 Male Psychol. Israel EURO
  1 Male Psychol. Sweden EURO
  1 Female Psychol. Sweden EURO
1 Female Psychol. Saudi Arabia EMRO
  1 Female Psychol. The Netherlands EURO
  1 Female Psychotherap. Israel EURO
  1 Female SW Sweden EURO
1 Female SW United States AMRO
1 Female Special ed. Germany EURO
  1 Female Special ed. India SEARO
  1 Male Special ed. Japan WPRO
  1 Female SLP Saudi Arabia EMRO
  1 Female SLP and Special ed. United States AMRO

WG 1: Working group 1; WG 2: Working group 2; WG 3: Working group 3; WHO: World Health Organization; OT: Occupational therapist; PT:
Physiotherapist; PedMD: Pediatrician; PsychMD: Psychiatrist; Psychol.: Psychologist; Psychotherap: Psychotherapist; SW: Social worker; Special ed.:
Special educator; SLP: Speech language pathologist; AFRO: Africa; EMRO: Eastern Mediterranean; EURO: Europe; SEARO: South East Asia; AMRO:
The Americas; WPRO: Western Pacific individuals with autism spectrum disorder (ASD) across the entire lifespan.

Brief ICF Core Set for older adolescents and and participation component (n = 34, 43%), followed by
adults (>17 years old) environmental factors (n = 27, 34%) and body functions
(n = 18, 23%). Contrary to the Brief Core Sets for pre-
Table 7 shows the categories that were included in the schoolers and school-age children, all nine chapters of the
Brief ICF Core Set for adults (>17 years old). The experts activities and participation component were represented,
voted to include 79 second-level ICF categories for this while one of the five environmental factors chapters, that
set. Categories were mostly from the activities is, e2 Natural environment and human-made changes, was
Bölte et al. 459

Table 3.  The second-level ICF categories included in the Table 3. (Continued)
Comprehensive ICF Core Set for individuals with ASD across
the entire lifespan. Second-level ICF category

Second-level ICF category d540 Dressing

d550 Eating
b114 Orientation functions d570 Looking after one’s health
b117 Intellectual functions d571 Looking after one’s safety
b122 Global psychosocial functions d620 Acquisition of goods and services
b125 Dispositions and intra-personal functions d630 Preparing meals
b126 Temperament and personality functions d640 Doing housework
b130 Energy and drive functions d650 Caring for household objects
b134 Sleep functions d660 Assisting others
b140 Attention functions d710 Basic interpersonal interactions
b144 Memory functions d720 Complex interpersonal interactions
b147 Psychomotor functions d730 Relating with strangers
b152 Emotional functions d740 Formal relationships
b156 Perceptual functions d750 Informal social relationships
b160 Thought functions d760 Family relationships
b164 Higher level cognitive functions d770 Intimate relationships
b167 Mental functions of language d820 School education
b265 Touch function d825 Vocational training
b270 Sensory functions related to temperature and other d830 Higher education
stimuli d845 Acquiring, keeping, and terminating a job
b330 Fluency and rhythm of speech functions d850 Remunerative employment
b760 Control of voluntary movement functions d860 Basic economic transactions
b765 Involuntary movement functions d870 Economic self-sufficiency
d110 Watching d880 Engagement in play
d115 Listening d910 Community life
d130 Copying d920 Recreation and leisure
d132 Acquiring information d940 Human rights
d137 Acquiring concepts e110 Products or substances for personal consumption
d140 Learning to read e115 Products and technology for personal use in daily living
d145 Learning to write e125 Products and technology for communication
d155 Acquiring skills e130 Products and technology for education
d160 Focusing attention e240 Light
d161 Directing attention e250 Sound
d163 Thinking e310 Immediate family
d166 Reading e315 Extended family
d170 Writing e320 Friends
d175 Solving problems e325 Acquaintances, peers, colleagues, neighbors, and
d177 Making decisions community members
d210 Undertaking a single task e330 People in positions of authority
d220 Undertaking multiple tasks e340 Personal care providers and personal assistants
d230 Carrying out daily routine e355 Health professionals
d240 Handling stress and other psychological demands e360 Other professionals
d250 Managing one’s own behavior e410 Individual attitudes of immediate family members
d310 Communicating with—receiving—spoken messages e415 Individual attitudes of extended family members
d315 Communicating with—receiving—nonverbal messages e420 Individual attitudes of friends
d330 Speaking e430 Individual attitudes of people in positions of authority
d331 Pre-talking e450 Individual attitudes of health professionals
d335 Producing nonverbal messages e455 Individual attitudes of other professionals
d350 Conversation e460 Societal attitudes
d360 Using communication devices and techniques e465 Social norms, practices, and ideologies
d470 Using transportation e525 Housing services, systems, and policies
d475 Driving e535 Communication services, systems, and policies
d510 Washing oneself e550 Legal services, systems, and policies
d520 Caring for body parts e560 Media services, systems, and policies
d530 Toileting
(Continued)
460 Autism 23(2)

Table 3. (Continued) Table 4. (Continued)

Second-level ICF category Second-level ICF category
e570 Social security services, systems, and policies e125 Products and technology for communication
e575 General social support services, systems, and policies e130 Products and technology for education
e580 Health services, systems, and policies e310 Immediate family
e585 Education and training services, systems, and policies e315 Extended family
e590 Labor and employment services, systems, and policies e325 Acquaintances, peers, colleagues, neighbors, and
s110 Structure of brain community members
e330 People in positions of authority
ICF: International Classification of Functioning, Disability and Health;
ASD: autism spectrum disorder.
e340 Personal care providers and personal assistants
e355 Health professionals
e360 Other professionals
Table 4.  The second-level ICF categories included in the e410 Individual attitudes of immediate family members
Common Brief ICF Core Set for individuals with ASD across e415 Individual attitudes of extended family members
the entire lifespan. e430 Individual attitudes of people in positions of authority
Second-level ICF category e450 Individual attitudes of health professionals
e460 Societal attitudes
b114 Orientation functions e465 Social norms, practices, and ideologies
b117 Intellectual functions e550 Legal services, systems, and policies
b122 Global psychosocial functions e570 Social security services, systems, and policies
b125 Dispositions and intra-personal functions e575 General social support services, systems, and policies
b126 Temperament and personality functions e580 Health services, systems, and policies
b130 Energy and drive functions e585 Education and training services, systems, and policies
b134 Sleep functions e590 Labor and employment services, systems, and policies
b140 Attention functions
b144 Memory functions ICF: International Classification of Functioning, Disability and Health;
ASD: autism spectrum disorder.
b147 Psychomotor functions
b152 Emotional functions
b156 Perceptual functions Table 5.  The second-level ICF categories included in the Brief
b160 Thought functions ICF Core Set for preschool age group of 0–5 years old.
b164 Higher level cognitive functions
Second-level ICF category
b167 Mental functions of language
b330 Fluency and rhythm of speech functions b114 Orientation functions
b760 Control of voluntary movement functions b117 Intellectual functions
b765 Involuntary movement functions b122 Global psychosocial functions
d132 Acquiring information b125 Dispositions and intra-personal functions
d155 Acquiring skills b126 Temperament and personality functions
d160 Focusing attention b130 Energy and drive functions
d210 Undertaking a single task b134 Sleep functions
d220 Undertaking multiple tasks b140 Attention functions
d230 Carrying out daily routine b144 Memory functions
d240 Handling stress and other psychological demands b147 Psychomotor functions
d250 Managing one’s own behavior b152 Emotional functions
d310 Communicating with—receiving—spoken messages b156 Perceptual functions
d315 Communicating with—receiving—nonverbal messages b160 Thought functions
d330 Speaking b164 Higher level cognitive functions
d570 Looking after one’s health b167 Mental functions of language
d571 Looking after one’s safety b270 Sensory functions related to temperature and other
d710 Basic interpersonal interactions stimuli
d720 Complex interpersonal interactions b330 Fluency and rhythm of speech functions
d760 Family relationships b760 Control of voluntary movement functions
d820 School education b765 Involuntary movement functions
d880 Engagement in play d110 Watching
d920 Recreation and leisure d115 Listening
e110 Products or substances for personal consumption d130 Copying
e115 Products and technology for personal use in daily living d132 Acquiring information
Bölte et al. 461

Table 5. (Continued) Table 6.  The second-level ICF categories included in the Brief
ICF Core Set for school-age group of 6–16 years.
Second-level ICF category
Second level ICF category
d137 Acquiring concepts
d155 Acquiring skills b114 Orientation functions
d160 Focusing attention b117 Intellectual functions
d161 Directing attention b122 Global psychosocial functions
d210 Undertaking a single task b125 Dispositions and intra-personal functions
d220 Undertaking multiple tasks b126 Temperament and personality functions
d230 Carrying out daily routine b130 Energy and drive functions
d240 Handling stress and other psychological demands b134 Sleep functions
d250 Managing one’s own behavior b140 Attention functions
d310 Communicating with—receiving—spoken messages b144 Memory functions
d315 Communicating with—receiving—nonverbal messages b147 Psychomotor functions
d330 Speaking b152 Emotional functions
b156 Perceptual functions
d331 Pre-talking
b160 Thought functions
d335 Producing nonverbal messages
b164 Higher level cognitive functions
d360 Using communication devices and techniques
b167 Mental functions of language
d530 Toileting
b330 Fluency and rhythm of speech functions
d550 Eating
b760 Control of voluntary movement functions
d570 Looking after one’s health
b765 Involuntary movement functions
d571 Looking after one’s safety
d110 Watching
d710 Basic interpersonal interactions
d115 Listening
d720 Complex interpersonal interactions
d130 Copying
d760 Family relationships d132 Acquiring information
d820 School education d137 Acquiring concepts
d880 Engagement in play d140 Learning to read
d920 Recreation and leisure d145 Learning to write
e110 Products or substances for personal consumption d155 Acquiring skills
e115 Products and technology for personal use in daily living d160 Focusing attention
e125 Products and technology for communication d161 Directing attention
e130 Products and technology for education d163 Thinking
e240 Light d175 Solving problems
e250 Sound d177 Making decisions
e310 Immediate family d210 Undertaking a single task
e315 Extended family d220 Undertaking multiple tasks
e325 Acquaintances, peers, colleagues, neighbors, and d230 Carrying out daily routine
community members d240 Handling stress and other psychological demands
e330 People in positions of authority d250 Managing one’s own behavior
e340 Personal care providers and personal assistants d310 Communicating with—receiving—spoken messages
e355 Health professionals d315 Communicating with—receiving—nonverbal messages
e360 Other professionals d330 Speaking
e410 Individual attitudes of immediate family members d350 Conversation
e415 Individual attitudes of extended family members d470 Using transportation
e430 Individual attitudes of people in positions of authority d510 Washing oneself
e450 Individual attitudes of health professionals d530 Toileting
e460 Societal attitudes d540 Dressing
e465 Social norms, practices, and ideologies d570 Looking after one’s health
e550 Legal services, systems, and policies d571 Looking after one’s safety
e570 Social security services, systems, and policies d710 Basic interpersonal interactions
e575 General social support services, systems, and policies d720 Complex interpersonal interactions
e580 Health services, systems, and policies d730 Relating with strangers
e585 Education and training services, systems, and policies d750 Informal social relationships
e590 Labor and employment services, systems, and policies d760 Family relationships

ICF: International Classification of Functioning, Disability and Health. (Continued)

462 Autism 23(2)

Table 6. (Continued) Table 7. (Continued)

Second level ICF category Second-level ICF category

d820 School education b760 Control of voluntary movement functions
d880 Engagement in play b765 Involuntary movement functions
d920 Recreation and leisure d132 Acquiring information
e110 Products or substances for personal consumption d155 Acquiring skills
e115 Products and technology for personal use in daily living d160 Focusing attention
e125 Products and technology for communication d166 Reading
e130 Products and technology for education d175 Solving problems
e250 Sound d177 Making decisions
e310 Immediate family d210 Undertaking a single task
e315 Extended family d220 Undertaking multiple tasks
e320 Friends d230 Carrying out daily routine
e325 Acquaintances, peers, colleagues, neighbors, and d240 Handling stress and other psychological demands
community members d250 Managing one’s own behavior
e330 People in positions of authority d310 Communicating with—receiving—spoken messages
e340 Personal care providers and personal assistants d315 Communicating with—receiving—nonverbal messages
e355 Health professionals d330 Speaking
e360 Other professionals d350 Conversation
e410 Individual attitudes of immediate family members d360 Using communication devices and techniques
e415 Individual attitudes of extended family members d470 Using transportation
e430 Individual attitudes of people in positions of authority d570 Looking after one’s health
e450 Individual attitudes of health professionals d571 Looking after one’s safety
e455 Individual attitudes of other professionals d640 Doing housework
e460 Societal attitudes d710 Basic interpersonal interactions
e465 Social norms, practices, and ideologies d720 Complex interpersonal interactions
e535 Communication services, systems, and policies d740 Formal relationships
e550 Legal services, systems, and policies d750 Informal social relationships
e570 Social security services, systems, and policies d760 Family relationships
e575 General social support services, systems, and policies d820 School education
e580 Health services, systems, and policies d825 Vocational training
e585 Education and training services, systems, and policies d845 Acquiring, keeping, and terminating a job
e590 Labor and employment services, systems, and policies d860 Basic economic transactions
d870 Economic self-sufficiency
ICF: International Classification of Functioning, Disability and Health.
d880 Engagement in play
d910 Community life
Table 7.  The second-level ICF categories included in the Brief d920 Recreation and leisure
ICF Core Set for older adolescents and adults (>17 years old). d940 Human rights
e110 Products or substances for personal consumption
Second-level ICF category
e115 Products and technology for personal use in daily living
b114 Orientation functions e125 Products and technology for communication
b117 Intellectual functions e130 Products and technology for education
b122 Global psychosocial functions e310 Immediate family
b125 Dispositions and intra-personal functions e315 Extended family
b126 Temperament and personality functions e320 Friends
b130 Energy and drive functions e325 Acquaintances, peers, colleagues, neighbors, and
b134 Sleep functions community members
b140 Attention functions e330 People in positions of authority
b144 Memory functions e340 Personal care providers and personal assistants
b147 Psychomotor functions e355 Health professionals
b152 Emotional functions e360 Other professionals
b156 Perceptual functions e410 Individual attitudes of immediate family members
b160 Thought functions e415 Individual attitudes of extended family members
b164 Higher level cognitive functions e430 Individual attitudes of people in positions of authority
b167 Mental functions of language e450 Individual attitudes of health professionals
b330 Fluency and rhythm of speech functions e460 Societal attitudes
Bölte et al. 463

Table 7. (Continued) (Fournier et al., 2010), hypersensitivity (Marco et al.,

Second-level ICF category 2011), and speech fluency (Scaler Scott et al., 2014).
Interestingly, during the consensus conference, the
e465 Social norms, practices, and ideologies experts were generally less inclined to include body func-
e525 Housing services, systems, and policies tions categories in the ASD Core Sets as compared to activi-
e535 Communication services, systems, and policies ties and participation categories and environmental factors.
e550 Legal services, systems, and policies One possible explanation might be that since the concept of
e560 Media services, systems, and policies ASD has evolved within a biomedical framework, and the
e570 Social security services, systems, and policies
defining features of ASD are already covered by ICD-10
e575 General social support services, systems, and policies
and DSM-5, the participating experts perhaps saw the devel-
e580 Health services, systems, and policies
opment of ICF Core Sets for ASD as an option of achieving
e585 Education and training services, systems, and policies
a more holistic perspective, integrating personal, social, and
e590 Labor and employment services, systems, and policies
environmental aspects of the individual (Escorpizo et al.,
ICF: International Classification of Functioning, Disability and Health. 2013; Hwu et al., 2001a). Indeed, enriching the holistic per-
spective, a variety of environmental factors were included in
not covered. The three most covered chapters were b1 the ASD Core Sets. The role of environmental factors on
Mental functions (n = 15, 19%); e5 Services, systems, and individual functioning in ASD has previously been high-
policies (n = 9, 11%); and e3 Support and relationships lighted (Dawson et al., 2012; Fein et al., 2017; Kirby et al.,
(n = 8, 10%). 2016). However, there is still a need to understand and take
into account the influence of the environment on functional
outcomes in ASD, and to prioritize interventions that allow
Discussion individuals with ASD to achieve optimal functioning in key
The goal of the international consensus conference was to contexts, for example, education (Fleury et al., 2014) and
develop Comprehensive and Brief ICF Core Sets for ASD vocation (Shattuck et al., 2012). The environmental factors
with consideration of the evidence collected through four included in the ASD Core Sets are well suited to describe
international preparatory studies, that is, a systematic lit- possible facilitators and barriers of functioning in various
erature review (De Schipper et al., 2015), an expert sur- environments. However, the insufficient granularity of the
vey (De Schipper et al., 2016), a qualitative study (Mahdi environmental factors or for some insufficient comprehen-
et al., 2017a), and a clinical study (Mahdi et al., 2017b). siveness makes it difficult to generate information that is
This goal was achieved by an international and multi-pro- directly applicable in interventions. For instance, the
fessional group of experts who concluded that the descriptions of e310 immediate family or e315 extended
Comprehensive Core Set should highlight activities of family, e330 people in positions of authority are not detailed
daily living and functioning in various environments in enough to present an accurate picture of the social supports
the determination of functioning levels. Body functions of a person with ASD. Furthermore, within a family, some
and body structures found less resonance. The Brief Core members may be supportive while others pose barriers.
Sets followed the same pattern, including categories pre- There are no clear guidelines on how to handle this with
dominantly from the activities and participation compo- interventions. Nevertheless, adequately appreciating the
nent and environmental factors. The activities and role of environmental factors, such as involvement in play
participation categories that were identified as character- and recreation, on individual functioning in ASD is crucial
istic of individuals living with ASD were diverse and in to reducing barriers and promoting facilitators, and adapting
line with its operationalization in DSM-5 (APA, 2013), interventions to the needs of those living with ASD (Egilson
that is, challenges in social communication and relation- et al., 2017). The ASD Core Sets can help raise awareness
ships (Schmidt et al., 2015) and their impact on participa- about environmental factors and encourage stakeholders in
tion in activities of daily living from self-care (Du et al., ASD to explore existing attitudes and social beliefs (Burkett
2015) and academic achievement (Levy and Perry, 2011) et al., 2015; Ratto et al., 2016). Although symptoms of neu-
to vocational performance (Howlin et al., 2013). Contrary rodevelopmental disorders may be similar across cultures,
to activities and participation, the body function catego- symptom perception, interpretation, and acceptance are not
ries were less heterogeneous, consisting mainly of (b1) (Ravindran and Myers, 2012). With this as well as WHO’s
mental function categories. This is consistent with the commitment toward internationality and cultural diversity
conceptualization of ASD as a neurodevelopmental, men- in mind, the process to develop the ICF Core Sets for ASD
tal, and largely cognitive condition. Nevertheless, some made efforts to consider cultural and attitudinal differences.
physical and sensory aspects of the body were also cov- By equipping stakeholders with useful tools that explore the
ered. This reflects previous findings that show that the attitudinal environment of individuals with ASD, they will
impact of ASD extends beyond mental functions into be better able to detect, communicate, and address barriers
other body processes, such as motor coordination in the environment and reduce ASD-related stigmatization
464 Autism 23(2)

by providing appropriate interventions and knowledge been discussed in the publications on the preparatory stud-
about ASD. Despite the numerous advantages of recogniz- ies (De Schipper et al., 2015, 2016b; Mahdi et al., 2017a,
ing environmental factors, these have largely been ignored 2017b). First, although the six WHO world regions were
in the standardized diagnostic process of ASD. In fact, the represented in the preparatory studies and international
different diagnostic systems ICD-10 (WHO, 1992) and consensus conference, some parts of the world were better
DSM-5 (APA, 2013) do not take environmental factors into represented than others. This was also the case at the con-
account at all. Remarkably, the significance of environmen- sensus conference, potentially causing a risk that culture-
tal factors is often emphasized by individuals diagnosed sensitive categories were overlooked. Having an equal
with ASD and their caregivers—as indicated by the qualita- representation of WHO world regions is important, as the
tive study (Mahdi et al., 2017a) as compared to the system- majority of individuals with ASD live in low- and middle-
atic literature review (De Schipper et al., 2015) and expert income countries, despite the fact that almost all research
survey (De Schipper et al., 2016). on ASD focus on high-income countries (Bölte et al.,
There were some commonalities and differences found 2016; Durkin et al., 2015). Unfortunately, there was con-
in the various age-specific brief sets. Common to all age- siderable difficulty both to identify international experts
specific brief sets was the emphasis on mental functions. with diverse professional backgrounds and to get them to
This supports the notion that ASD is a persistent neurode- participate in the project. To address this issue, the confer-
velopmental condition associated with cognitive challenges ence participants were regularly reminded to consider the
(Demetriou et al., 2017; Magiati et al., 2014). Interestingly, applicability of the ICF Core Sets for ASD in various parts
sensory functions and sensory environment were not of the world and in all resource countries.
included in the adult group. One possible explanation could Second, despite efforts to achieve a broad representa-
be that improvements in sensory functions and acquired tion of disciplines, some professional groups may have
strategies that have been observed in individuals with ASD been underrepresented. For instance, few physiotherapists
as they get older (Kern et al., 2006) make adults with ASD and social workers participated in the consensus confer-
less susceptible to noise, light, and other sensory stimuli. ence, and there were no nurses at all. If there would have
Another explanation might be that the experts (without been a stronger representation of these professions, cate-
ASD) were less informed about the lived experiences of gories related to movement and mobility or gastrointesti-
adults, and perhaps an expert group of adults with ASD nal functions may have had a higher chance to be included
would have included sensory symptoms. As the age-spe- in the ICF Core Sets for ASD.
cific core sets are a secondary focus to help tailor the pro- Finally, while individuals with ASD and family mem-
cess for particular patients, the Comprehensive Core Set bers were involved in the preparatory studies to capture
and Brief Common Set can be used for all individuals with their unique views and experiences, they were not
ASD; they provide some flexibility for individual differ- expressly recruited to be part of the consensus conference,
ences within age categories. To better understand the com- limiting the extent of desirable co-production (Bölte,
plex associations or lack of associations between sensory 2017). However, one of the participating experts was a
functions and sensory environment with age as a modifier, mother of a child with ASD, therefore providing some
further research is needed—with possible consideration of direct lived experience perspective in the final ASD Core
the graphical modeling approach (Kalisch et al., 2010). Set decision-making process.
All age-specific brief sets contain ICF categories in the
environmental factors chapter d5 Services, systems, and
Applications of the ICF Core Sets for ASD
policies. This demonstrates the importance of access to
support, social and health care decision-making for the A novel and integral part of the diagnostic procedures and
well-being of individuals along the continuum of care criteria recommended for ASD in the upcoming
across the lifespan. For instance, the transition from ado- International Classification of Diseases–Eleventh Revision
lescence to adulthood poses major challenges to individu- (ICD-11) is the use of categories from the ICF to describe
als with ASD. To optimize functioning outcomes of the impact of a health condition on individual functioning
individuals with ASD during major transitional events, (Escorpizo et al., 2013). The ICF Core Sets for ASD will
such as moving from home, attending university, entering guide the selection of categories used in the ICD-11 and
the labor market, and living an independent life (Schall hereby mark a paradigm shift in the diagnostic assessment
et al., 2012), personal support may be required in various of ASD. The official international operationalization of
areas of life (Van Schalkwyk and Volkmar, 2017). ASD will then not only contain a perspective of psychopa-
thology, but more individually tangible functioning-related
health information across disciplines in a standardized and
Study limitations comprehensive manner. Another area of application may
There were several challenges faced in developing the be resource allocation. As the ICF and the core sets derived
ASD Core Sets that deserve attention, most of which have from it provide the possibility to more comprehensively
Bölte et al. 465

describe the individual challenges and strengths associated Declaration of conflicting interests
with ASD, they can also serve as a guide to more personal- The author(s) declared the following potential conflicts of inter-
ized rather than diagnosis-based resource allocation and est with respect to the research, authorship, and/or publication
reimbursement in health care and in education (Escorpizo of this article: Sven Bölte declares no conflict of interest related
and Stucki, 2013; Escorpizo et al., 2015; Hopfe et al., to this article. He discloses that he has in the last 5 years acted
2017). Finally, the ICF Core Sets for ASD enrich diagnos- as an author, consultant, or lecturer for Shire, Medice, Roche,
tic decision-making and treatment planning with a broad Eli Lilly, Prima Psychiatry, GLGroup, System Analytic,
range of information that considers relevant environmental Kompetento, Expo Medica, and Prophase. He receives royalties
factors and the specific needs of the individual, for exam- for text books and diagnostic tools from Huber/Hogrefe,
Kohlhammer, and UTB. Petrus J de Vries declares no conflict
ple, in the form of functioning profile.
of interest related to this article. He has been on the study steer-
To promote the use of the ASD Core Sets in these and ing committee and advisory board for clinical trials and guide-
other application areas, it would be advisable to develop line development in tuberous sclerosis complex funded by
standardized user-friendly ICF Core Set-based tools, Novartis. Soheil Mahdi, Mats Granlund, Wolfgang Segerer,
such as a questionnaire with a scale that applies estab- Melissa Selb, Cory Shulman, John E. Robison, Bruce Tonge,
lished measurement standards, or observation schedules Virginia Wong, and Lonnie Zwaigenbaum declare no conflict
and interviews. The ASD Core Sets are solely a selection of interest related to this work.
of the most relevant categories of functioning and envi-
ronmental factors; practitioners who are unfamiliar with Funding
the ICF may find it easier and more practical to use the The author(s) disclosed receipt of the following financial support
ASD Core Sets in a form that they are familiar with, such for the research, authorship, and/or publication of this article:
as a questionnaire/instrument. An example of an ICF The development of ICF Core Sets for ASD is supported by the
Core Set-based instrument is the ASAS Health Index Swedish Research Council in partnership with FAS (now
(Kiltz et al., 2014). Another example of a clinical and renamed FORTE), FORMAS, and VINNOVA (trans-discipli-
research application of ICF Core Sets to guide appropri- nary research programs on child and youth mental health, grant
ate measures is the ICF-based toolbox of multi-item no. 259-2012-24).
measures for children and youth with cerebral palsy
(Schiariti et al., 2017). Beyond developing tangible tools ORCID iD
for clinical use and research, the use of the ICF Core Sets Lonnie Zwaigenbaum https://orcid.org/0000-0001-9607-0799
for ASD to help improve service provision and support
policy-making at the local, regional, and country level is References
envisioned. American Psychiatric Association (APA) (2013) Diagnostic
and Statistical Manual of Mental Disorders (DSM-5).
Acknowledgements Washington, DC: Pilgrim Press.
The development of ICF Core Sets for ASD is a cooperative effort Ayuso-Mateos JL, Avila CC, Anaya C, et al. (2013) Development
of the ICF Research Branch, a partner within the WHO of the International Classification of Functioning, Disability
Collaborating Centre for the Family of International Classifications and Health core sets for bipolar disorders: results of an inter-
in Germany (at DIMDI), the International Society for Autism national consensus process. Disability and Rehabilitation
Research (INSAR), and the Center of Neurodevelopmental 35(25): 2138–2146.
Disorders at the Karolinska Institutet (KIND) in Sweden. This Baxter AJ, Brugha TS, Erskine HE, et al. (2015) The epide-
paper recognizes the invaluable contribution of individuals on the miology and global burden of autism spectrum disorders.
autism spectrum, their family members, experts, and other stake- Psychological Medicine 45(3): 601–613.
holders, as well as past members of the project (Elles de Schipper) Bölte S (2009) The ICF and its meaning for child and adolescent
who contributed to the preparatory studies or organization and psychiatry. Zeitschrift Für Kinder- Und Jugendpsychiatrie
administration of the whole ASD ICF Core Sets development; the Und Psychotherapie 37(6): 495–497.
experts who participated in the consensus conference (Akihiro Bölte S (2017) Autism-Europe International Congress
Takamatsu, Diana Lorenz, Dido Green, Hanna Alonim, James 2016-Autism research and practice in Europe 2016. Autism
Shelly, Lama Alohali, Linda Watson, Lino Palacios Cruz, Mareike 21(1): 3–4.
Altgassen, Marisa Viljoen, Martina Schabert, Mashael Alshalan, Bölte S, de Schipper E, Robison JE, et al. (2014) Classification of
Michael Jung, Ofer Golan, Patti West-Okiri, Peter Karlsson, functioning and impairment: the development of ICF core
Rubina Lal, Ulrika Långh, V.S. Bole, and Viviann Nordin); and sets for autism spectrum disorder. Autism Research 7(1):
the Steering Committee (Omar Almodayfer, Judith Hollenweger, 167–172.
Bedirhan Üstün, and authors P.J.d.V., M.G., J.E.R., C.S., S.S., Bölte S, Tomalski P, Marschik PB, et al. (2016) Challenges
B.T., V.W., L.Z.). We also acknowledge the important efforts of and inequalities of opportunities in European psychiatry
the assistants who recorded the discussions and votes that took research: the example of psychodiagnostic tool availability
place during the WG and plenary sessions of the consensus confer- in research on early autism identification. European Journal
ence (Adina Iatan, Armin Manouchehr, Charlie Åkerblom, Fanny of Psychological Assessment. Epub ahead of print 3 August.
Rohdin, Karl Lundin, and Philip Ivers Ohlsson). DOI: 10.1027/1015-5759/a000340.
466 Autism 23(2)

Burkett K, Morris E, Manning-Courtney P, et al. (2015) African Health (ICF): importance and methods to link disease and
American families on autism diagnosis and treatment: the functioning. BMC Public Health 13: 742.
influence of culture. Journal of Autism and Developmental Fein D, Barton M and Dumont-Mathieu T (2017) Optimizing
Disorders 45(10): 3244–3254. outcome in autism spectrum disorders. Policy Insights from
Cashin A, Buckley T, Trollor JN, et al. (2016) A scoping review the Behavioral and Brain Sciences 4(1): 71–78.
of what is known of the physical health of adults with autism Fleury VP, Hedges S, Hume K, et al. (2014) Addressing the aca-
spectrum disorder. Journal of Intellectual Disabilities. Epub demic needs of adolescents with autism spectrum disorder
ahead of print 1 January. DOI: 10.1177/1744629516665242. in secondary education. Remedial and Special Education
Castro S and Pinto AI (2013) Identification of core functioning 35(2): 68–79.
features for assessment and intervention in Autism Spectrum Fortuna RJ, Robinson L, Smith TH, et al. (2015) Health condi-
Disorders. Disability and Rehabilitation 35(2): 125–133. tions and functional status in adults with autism: a cross-
Centers for Disease Control and Prevention (CDC) (2016) sectional evaluation. Journal of General Internal Medicine
Identified prevalence of autism spectrum disorder. Available 31(1): 77–84.
at: www.cdc.gov/ncbddd/autism/data.html (accessed 30 Fountain C, Winter AS and Bearman PS (2012) Six developmen-
March 2017). tal trajectories characterize children with autism. Pediatrics
Cieza A, Chatterji S, Andersen C, et al. (2004) ICF core sets for 129(5): 1112–1120.
depression. Journal of Rehabilitation Medicine 44: 128– Fournier KA, Hass CJ, Naik SK, et al. (2010) Motor coordination
134. in autism spectrum disorders: a synthesis and meta-analysis.
Cieza A, Geyh S, Chatterji S, et al. (2005) ICF linking rules: an Journal of Autism and Developmental Disorders 40(10):
update based on lessons learned. Journal of Rehabilitation 1227–1240.
Medicine 37(4): 212–218. Hirvikoski T, Mittendorfer-Rutz E, Boman M, et al. (2016)
Dawson G, Jones EJH, Merkle K, et al. (2012) Early behavio- Premature mortality in autism spectrum disorder. British
ral intervention is associated with normalized brain activ- Journal of Psychiatry 208(3): 232–238.
ity in young children with autism. Journal of the American Hopfe M, Prodinger B, Bickenbach JE, et al. (2017) Optimizing
Academy of Child and Adolescent Psychiatry 51(11): 1150– health system response to patient’s needs: an argu-
1159. ment for the importance of functioning information.
De Schipper E, Lundequist A, Coghill D, et al. (2015) Ability Disability Rehabilitation. Epub ahead of print 6 June. DOI:
and disability in autism spectrum disorder: a systematic lit- 10.1080/09638288.2017.1334234.
erature review employing the International Classification Howlin P, Moss P, Savage S, et al. (2013) Social outcomes in
of Functioning, Disability and Health-Children and Youth mid- to later adulthood among individuals diagnosed with
Version. Autism Research 8(6): 782–794. autism and average nonverbal IQ as children. Journal of
De Schipper E, Mahdi S, de Vries PJ, et al. (2016) Functioning the American Academy of Child and Adolescent Psychiatry
and disability in autism spectrum disorder: a worldwide sur- 52(6): 572–581.
vey of experts. Autism Research 9(9): 959–969. Hwu Y-J, Coates VE and Boore JRP (2001) The evolving con-
Demetriou EA, Lampit A, Quintana DS, et al. (2017) Autism cept of health in nursing research: 1988–1998. Patient
spectrum disorders: a meta-analysis of executive function. Education and Counseling 42(2): 105–114.
Molecular Psychiatry. Epub ahead of print 25 April. DOI: Idring S, Lundberg M, Sturm H, et al. (2015) Changes in preva-
10.1038/mp.2017.75. lence of autism spectrum disorders in 2001–2011: findings
Du RY, Yiu CKY, King NM, et al. (2015) Oral health among from the Stockholm youth cohort. Journal of Autism and
preschool children with autism spectrum disorders: a case- Developmental Disorders 45(6): 1766–1773.
control study. Autism 19(6): 746–751. Jonsson U, Alaie I, Löfgren-Wilteus A, et al. (2017) Annual
Durkin MS, Elsabbagh M, Barbaro J, et al. (2015) Autism screen- Research Review: quality of life and childhood mental and
ing and diagnosis in low resource settings: challenges and behavioural disorders—a critical review of the research.
opportunities to enhance research and services worldwide. Journal of Child Psychology and Psychiatry 58(4): 439–
Autism Research 8(5): 473–476. 469.
Egilson ST, Jakobsdóttir G, Olafsson K, et al. (2017) Community Joshi G, Wozniak J, Petty C, et al. (2013) Psychiatric comor-
participation and environment of children with and without bidity and functioning in a clinically referred population of
autism spectrum disorder: parent perspectives. Scandinavian adults with autism spectrum disorders: a comparative study.
Journal of Occupational Therapy 24(3): 187–196. Journal of Autism and Developmental Disorders 43(6):
Escorpizo R and Stucki G (2013) Disability evaluation, social 1314–1325.
security, and the International Classification of Functioning, Kalisch M, Fellinghauer BAG, Grill E, et al. (2010) Understanding
Disability and Health: the time is now. Journal of human functioning using graphical models. BMC Medical
Occupational and Environmental Medicine 55(6): 644–651. Research Methodology 10: 14.
Escorpizo R, Brage S, Homa D, et al. (2015) Handbook of Kern JK, Trivedi MH, Garver CR, et al. (2006) The pattern of
Vocational Rehabilitation and Disability Evaluation: sensory processing abnormalities in autism. Autism 10(5):
Application and Implementation of the ICF. Cham: Springer 480–494.
International Publishing. Kiltz U, van der Heijde D, Boonen A, et al. (2014) The ASAS
Escorpizo R, Kostanjsek N, Kennedy C, et al. (2013) Harmonizing Health Index (ASAS HI)—a new tool to assess the health
WHO’s international classification of diseases (ICD) and status of patients with spondyloarthritis. Clinical and
International Classification of Functioning, Disability and Experimental Rheumatology 32(5): 105–108.
Bölte et al. 467

Kirby AV, Baranek GT and Fox L (2016) Longitudinal predic- Schiariti V, Selb M, Cieza A, et al. (2015) International
tors of outcomes for adults with autism spectrum disorder: Classification of Functioning, Disability and Health Core
systematic review. OTJR: Occupation, Participation and Sets for children and youth with cerebral palsy: a consen-
Health 36(2): 55–64. sus meeting. Developmental Medicine and Child Neurology
Levy A and Perry A (2011) Outcomes in adolescents and adults 57(2): 149–158.
with autism: a review of the literature. Research in Autism Schiariti V, Tatla S, Sauve K, et al. (2017) Toolbox of multiple-
Spectrum Disorders 5(4): 1271–1282. item measures aligning with the ICF Core Sets for chil-
Mahdi S, Viljoen M, Yee T, et al. (2017a) An international dren and youth with cerebral palsy. European Journal of
qualitative study of functioning in autism spectrum disor- Paediatric Neurology 21(2): 252–263.
der using the World Health Organization international clas- Schmidt L, Kirchner J, Strunz S, et al. (2015) Psychosocial
sification of functioning, disability and health framework. functioning and life satisfaction in adults with autism spec-
Autism Research. Epub ahead of print 11 December. DOI: trum disorder without intellectual impairment. Journal of
10.1002/aur.1905. Clinical Psychology 71(12): 1259–1268.
Mahdi S, Albertowski K, Almodayfer O, et al. (2017b) An inter- Schraner I, De Jonge D, Layton N, et al. (2008) Using the ICF in
national clinical study of ability and disability in Autism economic analyses of Assistive Technology systems: meth-
Spectrum disorder using the WHO-ICF Framework (under odological implications of a user standpoint. Disability and
revision). Rehabilitation 30(12–13): 916–926.
Magiati I, Tay XW and Howlin P (2014) Cognitive, language, Selb M, Escorpizo R, Kostanjsek N, et al. (2015) A guide on how
social and behavioural outcomes in adults with autism spec- to develop an International Classification of Functioning,
trum disorders: a systematic review of longitudinal follow- Disability and Health Core Set. European Journal of
up studies in adulthood. Clinical Psychology Review 34(1): Physical and Rehabilitation Medicine 51(1): 105–117.
73–86. Shattuck PT, Roux AM, Hudson LE, et al. (2012) Services for
Marco EJ, Hinkley LBN, Hill SS, et al. (2011) Sensory pro- adults with an autism spectrum disorder. The Canadian
cessing in autism: a review of neurophysiologic findings. Journal of Psychiatry 57(5): 284–291.
Pediatric Research 69(5): 48–54. Van Heijst BF and Geurts HM (2015) Quality of life in autism
Ratto AB, Reznick JS and Turner-Brown L (2016) Cultural across the lifespan: a meta-analysis. Autism 19(2): 158–
effects on the diagnosis of autism spectrum disorder 167.
among Latinos. Focus on Autism and Other Developmental Van Schalkwyk GI and Volkmar FR (2017) Autism spectrum
Disabilities 31(4): 275–283. disorders: challenges and opportunities for transition to
Ravindran N and Myers BJ (2012) Cultural influences on percep- adulthood. Child and Adolescent Psychiatric Clinics of
tions of health, illness and disability: a review and focus on North America 26(2): 329–339.
autism. Journal of Child and Family Studies 21(2): 311–319. Woodman AC, Smith LE, Greenberg JS, et al. (2015) Change in
Salazar F, Baird G, Chandler S, et al. (2015) Co-occurring psy- autism symptoms and maladaptive behaviors in adolescence
chiatric disorders in preschool and elementary school-aged and adulthood: the role of positive family processes. Journal
children with autism spectrum disorder. Journal of Autism of Autism and Developmental Disorders 45(1): 111–126.
and Developmental Disorders 45(8): 2283–2294. World Health Organization (WHO) (1992) International
Scaler Scott K, Tetnowski JA, Flaitz JR, et al. (2014) Preliminary Statistical Classification of Diseases and Related Health
study of disfluency in school-aged children with autism. Problems—10th Revision (ICD-10). Geneva: WHO.
International Journal of Language and Communication World Health Organization (WHO) (2001) The International
Disorders 49(1): 75–89. Classification of Functioning, Disability and Health: ICF.
Schall C, Wehman P and McDonough JL (2012) Transition from Geneva: WHO.
school to work for students with autism spectrum disorders: World Health Organization (WHO) (2007) International
understanding the process and achieving better outcomes. Classification of Functioning, Disability and Health:
Pediatric Clinics of North America 59(1): 189–202. Children and Youth Version: ICF-CY. Geneva: WHO.