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

Soheil Mahdi,Lonnie Zwaigenbaum,Ane Knüppel,Graccielle Rodrigues Da Cunha,Sven Bölte,Katja Albertowski,José Carlos Dias,Sara Carucci,Vaia Arsenopoulou,Omar Almodayfer,Petrus J De Vries,Tokio Uchiyama,Marlene Briciet Lauritsen,Nicole Wolff,Melissa Selb,Anika Langmann,Mats Granlund,Mohammad Khalil

doi:10.1007/s10803-018-3482-4

Abstract

This is the fourth international preparatory study designed to develop International Classification of Functioning, Disability and Health (ICF, and Children and Youth version, ICF-CY) Core Sets for Autism Spectrum Disorder (ASD). Examine functioning of individuals diagnosed with ASD as documented by the ICF-CY in a variety of clinical settings. A cross-sectional study was conducted, involving 11 units from 10 countries. Clinical investigators assessed functioning of 122 individuals with ASD using the ICF-CY checklist. In total, 139 ICF-CY categories were identified: 64 activities and participation, 40 body functions and 35 environmental factors. The study results reinforce the heterogeneity of ASD, as evidenced by the many functional and contextual domains impacting on ASD from a clinical perspective.

Highlights

Autism spectrum disorder (ASD) is a neurodevelopmental condition with an estimated worldwide prevalence of 1–2% (Baxter et al 2015; CDC 2016; Idring et al 2015) characterized by persistent difficulties in social communication and interaction, alongside restricted, repetitive behavior patterns and interests (APA 2013)
The investigators were strictly encouraged to seek consensus ratings within their clinical teams pertaining to the cases. This clinical cross-sectional study sought to capture the entire spectrum of functioning in Autism Spectrum Disorder (ASD) from a clinical perspective, exploring disabilities, and abilities and strengths, using the ICF-CY framework
The results from the current study are a step towards providing the scientific basis for developing ICF Core Sets for ASD, from which user-friendly tools can be derived and standardized for multi-purpose usage, ranging from preclinical and clinical research, educational and clinical practice to policy-making and service reimbursement models

Summary

Introduction

Autism spectrum disorder (ASD) is a neurodevelopmental condition with an estimated worldwide prevalence of 1–2% (Baxter et al 2015; CDC 2016; Idring et al 2015) characterized by persistent difficulties in social communication and interaction, alongside restricted, repetitive behavior patterns and interests (APA 2013). Even though ASD is primarily defined by challenges in various aspects of daily life, it has been reported to entail specific strengths, such as attention to detail (Baron-Cohen et al 2009; de Schipper et al 2016), enhanced visuo-spatial skills (Happé and Frith 2009), creativity (de Schipper et al 2016) and memory (de Schipper et al 2016) Environmental factors such as higher socio-economic background, parental commitment, and provision of evidence-based treatments, have found to facilitate the functional outcome of individuals with ASD regarding social relationships as well as school and vocational achievement (Delobel-Ayoub et al 2015; Durkin et al 2010; Kirby et al 2016; Rai et al 2012). Endorsed by the World Health Organization in 2001, the ICF provides

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Conclusion