An international qualitative study of functioning in autism spectrum disorder using the World Health Organization international classification of functioning, disability and health framework

Abstract

This is the third in a series of four empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The present study aimed to describe functioning in ASD (as operationalized by the ICF) derived from the perspectives of diagnosed individuals, family members, and professionals. A qualitative study using focus groups and semi‐structured interviews were conducted with 19 stakeholder groups (N = 90) from Canada, India, Saudi Arabia, South Africa, and Sweden. Meaningful concepts from the focus groups and individual interviews were linked to ICF categories using a deductive qualitative approach with standardized linking procedures. The deductive qualitative content analysis yielded meaningful functioning concepts that were linked to 110 ICF categories across all four ICF components. Broad variation of environmental factors and activities and participation categories were identified in this study, while body functions consisted mainly of mental functions. Body structures were sparsely mentioned by the participants. Positive aspects of ASD included honesty, attention to detail, and memory. The experiences provided by international stakeholders support the need to understand individuals with ASD in a broader perspective, extending beyond diagnostic criteria into many areas of functioning and environmental domains. This study is part of a larger systematic effort that will provide the basis to define ICF Core Sets for ASD, from which assessment tools can be generated for use in clinical practice, research, and health care policy making. Autism Res 2018, 11: 463–475. © 2017 The Authors Autism Research published by International Society for Autism Research and Wiley Periodicals, Inc.Lay SummaryThe study findings support the need to understand the living experiences of individuals with Autism Spectrum Disorder (ASD) from a broader perspective, taking into account many areas of an individual's functioning and environment. The ICF can serve as foundation for exploring these living experiences more extensively by offering tools that enable wide variety of individual difficulties and strengths to be captured along with important environmental influences. As such, these tools can facilitate interventions that meet the needs and goals of the individual.

The Gestalt of functioning in autism spectrum disorder: Results of the international conference to develop final consensus International Classification of Functioning, Disability and Health core sets

“…The international survey of ASD experts collected the views and opinions of 225 experts across 10 professional disciplines from 43 countries and all WHO world regions (De Schipper et al, 2016). The qualitative study involved focus group discussions and semi-structured interviews of individuals with ASD, family members, and professional caregivers from 19 stakeholder groups in five countries from five WHO world regions (Mahdi et al, 2017a). Unlike the other preparatory studies, employing the ICF linking rules was not necessary to identify the candidate categories in the clinical cross-sectional study (Mahdi et al, 2017b).…”

An International Clinical Study of Ability and Disability in Autism Spectrum Disorder Using the WHO-ICF Framework

“…Part 1 contained the inclusion criteria of the study, part 2 included questions related to the socio-demographic background of the diagnosed individual, part 3 consisted of ratings of 161 second-level ICF-CY categories, and part 4 aimed to explore personal factors. To increase the specificity of the checklist content to individuals with ASD, 38 second-level ICF-CY categories were added in the checklist (17 body functions, 17 activities and participation categories, 3 environmental factors, and 1 body structure) based on results from our previous 3 preparatory studies: the literature review (Schipper et al 2015 , the expert survey Schipper et al 2016 and the qualitative study Mahdi et al 2017b ). The 161 ICF-CY categories were distributed among all 4 ICF-CY components in the checklist and contained 65 activities and participation categories, 48 body functions, 35 environmental factors and 13 body structures.…”

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.…”