Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version.
Use the 99 core ICF-CY categories—especially interpersonal interactions, emotional functions, and attention—to ensure your ASD assessments cover the full range of ability and disability.
01Research in Context
What this study did
de Schipper et al. (2015) read every autism outcome paper they could find. They pulled out the words authors used to describe how children with autism function. They sorted these words into the World Health Organization's kid-friendly ICF-CY code book. The team ended up with a list of 99 codes that show up again and again.
The review covers all ages and ability levels. It is not about one test or one therapy. It is a map of what researchers actually measure when they say a child is doing better or worse.
What they found
The same three areas show up in almost every study: talking with others, handling emotions, and paying attention. These three codes sit at the center of the map. Around them cluster 96 more codes, from sleep to hand use to making friends.
The big message is heterogeneity. Kids with autism can shine in one code and need help in the next. No single score can tell the whole story.
How this fits with other research
Mahdi et al. (2018) asked families around the world the same question and found 110 codes, not 99. The extra codes capture strengths like honesty and good memory that lab studies often miss. The two lists overlap; the second one just adds the good stuff parents notice.
McDougall et al. (2018) went further. They built a nine-domain patient-centered model from interviews. Their model adds life-impact areas such as family stress and community inclusion. Use Elles for the broad code list, then layer on Fiona when you pick which outcomes matter most to the family.
Gibson et al. (2021) narrowed the lens to play-based studies in young children. Their scoping review fits inside Elles' bigger map. If you start with the 99 codes, Gibson shows you which ones show up most often in play research.
Why it matters
Next time you write an assessment plan, open the 99-code list first. Check that you have at least one measure for interpersonal interactions, emotional functions, and attention. Then ask the family which extra codes matter to them. This quick habit turns a generic evaluation into a personalized roadmap that captures both struggle and strength.
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02At a glance
03Original abstract
OBJECTIVE: This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span). METHODS: Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached. RESULTS: Seventy-one studies were included in the final analysis and 2475 meaningful concepts contained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5% of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51%), emotional functions (49%), complex interpersonal interactions (48%), attention functions (44%), and mental functions of language (44%). CONCLUSION: The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD--both with respect to disability and exceptionality--and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD.
Autism research : official journal of the International Society for Autism Research, 2015 · doi:10.1002/aur.1485