Functioning and disability in autism spectrum disorder: A worldwide survey of experts

Abstract

Objective: This study is the second of four to prepare International Classification of Functioning, Disability and Health (ICF; and Children and Youth version, ICF(‐CY)) Core Sets for Autism Spectrum Disorder (ASD).The objective of this study was to survey the opinions and experiences of international experts on functioning and disability in ASD. Methods: Using a protocol stipulated by the World Health Organization (WHO) and monitored by the ICF Research Branch, an email‐based questionnaire was circulated worldwide among ASD experts, and meaningful functional ability and disability concepts were extracted from their responses. These concepts were then linked to the ICF(‐CY) by two independent researchers using a standardized linking procedure. Results: N = 225 experts from 10 different disciplines and all six WHO‐regions completed the survey. Meaningful concepts from the responses were linked to 210 ICF(‐CY) categories. Of these, 103 categories were considered most relevant to ASD (i.e., identified by at least 5% of the experts), of which 37 were related to Activities and Participation, 35 to Body functions, 22 to Environmental factors, and 9 to Body structures. A variety of personal characteristics and ASD‐related functioning skills were provided by experts, including honesty, loyalty, attention to detail and creative talents. Reported gender differences in ASD comprised more externalizing behaviors among males and more internalizing behaviors in females. Conclusion: The ICF(‐CY) categories derived from international expert opinions indicate that the impact of ASD on functioning extends far beyond core symptom domains. Autism Res 2016, 9: 959–969. © 2016 The Authors Autism Research published by Wiley Periodicals, Inc. on behalf of International Society for Autism Research

Autism spectrum disorder: advances in diagnosis and evaluation

“…However, for children who clearly meet diagnostic criteria, it may be reasonable to establish the diagnosis first so that the family can access diagnosis specific resources, which often have substantial wait times in publicly funded systems,206 and to link these additional assessments more closely with treatment planning at the time of intervention 207208209…”

“…Further service planning and program evaluation are needed for service provision to be based on a child’s functional needs (as recommended in the International Classification of Functioning, Disability and Health; ICF207), as opposed to a categorical diagnosis, thereby enabling a greater focus on the bio-psycho-social effects of ASD 208209. Such shifts in service eligibility will themselves influence the diagnostic assessment process and deserve thoughtful planning, implementation, and evaluation.…”

A longitudinal examination of dyadic distress patterns following a skills intervention for carers of adolescents with anorexia nervosa

“…The present study is therefore part of a larger systematic effort that will subsequently lead to the development of standardized ICF Core Sets for ADHD. As part of this project, ICF Core Sets are also being developed for Autism Spectrum Disorder (ASD), with the results reported in separate publications [30][31][32][33].…”

Measuring functional ability of autism spectrum disorder in a global context

“…Secondly, the ACSF:SC emerged in the context of current efforts to develop official WHO‐guided core sets for ASD, based on a comprehensive, international, and publically available process, including a systematic literature review, expert survey, focus groups (manuscript in preparation), clinical study (ongoing), and consensus conference (scheduled for September 2016). While the ACSF:SC creation is an independent project, and researchers and clinicians are free to use and tailor the ICF to their individual needs, in our view it would be helpful to communicate the process and plans around the ACSF:SC to the wider ASD clinical research community.…”