AUTISM – ABILITY, DISABILITY, AND THE ICF CORE SET

Written by John Elder Robison and Taken from his blog HERE.

How do you define autism? Five years ago I became an autistic member of the steering committee for the World Health Organization’s Autism ICF Core Set project.  This January the Core Set was released.  You can read it here:

http://journals.sagepub.com/doi/full/10.1177/1362361318755522

You can read about the process in our group’s earlier papers, which are listed in the above article.

The Core Set identifies the ways autism affects us, and gives a better focus for understanding and study.  One thing I am proud of Is that this represents the first time the WHO has recognized both disability and exceptionality in a condition.  Before autism, the WHO’s descriptions only described degrees of diminished function.  Now, with the autism set, we recognize that exceptional abilities in certain areas of function can be just as characteristic of autism as disabilities in others.

For the first time a WHO definition encompasses what we call social and medical models of autism by integrating how we engage the wider world into the characteristic description of how autism shapes us.

It’s also noteworthy that this is one of the first (if not the first) Core Set to be developed with the input of actual affected individuals.

From the introduction to the Core Set peper:

The use of ICF may foster an approach of managing ASD that emphasizes individual abilities, disabilities, and the context that has an impact on the individual’s functioning. This approach is potentially meaningful for several reasons (Bölte, 2009; Escorpizo et al., 2013). First, not only is functioning often perceived as less stigmatizing than psychopathology or diagnosis, but problems in functioning are also often the reason for initial referral to services and focus for interventions rather than psychopathology itself. Given this, aspects of functioning are likely to be more tangible and meaningful than psychopathology/diagnosis to individuals with ASD, their families, and society as a whole. Aspects of functioning are also well suited to describe an individual’s real-life challenges and to guide individual intervention planning (Castro and Pinto, 2013). A functional lens may enable better calculation of health-related service costs (Hopfe et al., 2017; Schraner et al., 2008). Finally, individual descriptions of functional abilities and disabilities may also enhance communication between individuals on the autism spectrum, their environment, and experts. The ICF highlights the influence of the environment, stressing its positive and negative role in influencing outcome. Recognizing that environmental factors influence an individual’s outcome provides an opportunity to change those factors toward outcome improvement. It is also important to note that the ICF offers a framework to assess strengths, rather than just disability.

The Core Set effort was organized and led by Sven Bolte, Elles De Schipper and their colleagues at Karolinska Institute in Stockholm and elsewhere.  I’m proud to have had the chance to assist in the effort and look forward to continuing in work like this, and being joined by other autistic researchers and concerned individuals.

(c) 2018 John Elder Robison