The International Classification of Functioning, Disability and Health (ICF) core sets for autism

"The International Classification of Functioning, Disability and Health (ICF) is a framework for describing and organising information on functioning and disability. It provides a standard language and a conceptual basis for the definition and measurement of health and disability."

That is the US CDC - Centers for Disease Control and Prevention - definition of the ICF (from WHO) and how, among other things, the ICF offers a "scientific basis for understanding and studying health and health-related states, outcomes, determinants, and changes in health status and functioning."

Bearing in the mind the utility of the ICF, one might start to appreciate how useful a schedule it might be if applied to autism. Say for example, you wanted to develop "useful standards for research and clinical practice and generating a common language for functioning and impairment in ASD in different areas of life and across the life span" [1]?

Well, the paper from Sven Bölte and colleagues [1] detailing the initial foray into developing "Comprehensive and Brief ICF Core Sets for ASD [autism spectrum disorder]" has now been joined by a further publication from Elles de Schipper and colleagues [2] (open-access here) adding further flesh to the scientific bones in applying the the ICF to autism. The de Schipper paper represents stage one of this four stage project - "a systematic review, an expert survey, a patient and caregiver qualitative study, and a clinical cross-sectional study" - and an initial look at "relevant functional ability and disability concepts" which could be mapped onto "the ICF-CY (Children and Youth version of the ICF, covering the life span)."

The de Schipper paper is open-access so it doesn't need any grand discussions from me. I will draw your attention to a few details however covering some idea of the size of the task facing researchers in this area: "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." That also: "Twenty-two percent of the [autism relevant] concepts identified could not be linked to ICF-CY categories" means that the ICF-CY might not necessarily be as comprehensive as one would wish when [eventually] specifically applied to autism.

I am going to keep my eyes open for further developments of the ICF-CY with autism in mind. Assuming that this project gets it 'roughly right' when it comes to mapping the nature of autism onto the schedule, the potential benefits to autism research and practice are considerable when one takes into account ideas such as outcome and autism and its objective measurement including the analysis of things like daily living skills [3]. Move over Autism Impact Measure?

Music: Yeah Yeah Yeahs - Zero.

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[1] Bölte S. et al. Classification of functioning and impairment: the development of ICF core sets for autism spectrum disorder. Autism Res. 2014 Feb;7(1):167-72.

[2] de Schipper E. et al. Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version. Autism Res. 2015 Mar 28.

[3] Bal VH. et al. Daily living skills in individuals with autism spectrum disorder from 2 to 21 years of age. Autism. 2015. April 28.

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de Schipper E, Lundequist A, Coghill D, de Vries PJ, Granlund M, Holtmann M, Jonsson U, Karande S, Robison JE, Shulman C, Singhal N, Tonge B, Wong VC, Zwaigenbaum L, & Bölte S (2015). Ability and Disability in Autism Spectrum Disorder: A Systematic Literature Review Employing the International Classification of Functioning, Disability and Health-Children and Youth Version. Autism research : official journal of the International Society for Autism Research PMID: 25820780