Autism - Ability, Disability, and the ICF Core Set

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:          

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

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar at the College of William and Mary in Williamsburg, Virginia. He's also a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts and advisor to the Neurodiversity Institute at Landmark College in Putney, Vermont.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay will give you food for thought, actually printing and eating it may make you sick. 


Unknown said…
While it's nice to see the WHO recognize ability formally, which I hope results in research into strengths and how to use those strengths in education; I doubt very much that this change will lead to much that is meaningful as something vital is still being largely ignored.

You've often expressed concerns that the "least" challenged are ignoring the "most" challenged, at first citing both cognitive disabilities and medical conditions and then focusing only on medical conditions.

I would say that pales in comparison to what has already been ignored by researchers as well as some Autistic people, which has been quite devastating to multiple generations.

My concern is that "some" Autistic people that don't have PTSD or long term experience with suicide are ignoring those that do and why they had those experiences in the first place. When it comes to researchers, it's hasn't even been a consideration. Many researchers continue to regard traits of psychological trauma as Autism traits because their deficit focus doesn't lead to making those distinctions. Many express concern about high suicide rates but seem to lack any insight into why those rates are high.

I also fear "some" diagnosed later in life lack insight into childhood trauma relating to various Autism "treatments" and how that can severely impact cognitive development, especially in individuals that started out with significant cognitive delays that resulted in early diagnosis. There is already research into the lasting effects childhood trauma, yet for some reason it is treated as if it doesn't apply because Autistic children weren't a focus of the research.

Temple Grandin is considered a "success" story and was able to demonstrate unique strengths that accompanied her deficits, she has the brain scans to prove that her brain is different, promotes the idea that the world needs different brains and yet researchers are not interested in acknowledging her strengths; they still wish to use her brain scans to develop "preventions". Having strengths doesn't seem to be as important as making sure all children are conformed to fit a statistical average. If that continues, abuse will continue to go unrecognized.

The medical model doesn't only result in medical research, it views Autism exclusively as a deficit to be corrected. Having a recognition of "strengths" isn't going to change that any more than it does in any other disability community (nevermind the WHO). There are other disability groups that suffer the same psychological trauma because the focus on deficit, even when it is dominant; results in having their humanity ignored and being routinely dehumanized to raise money for research. To be clear, the medical model plays a significant role in suicide rates and poor mental health.

I have several life threatening medical conditions I have to manage, but they are all conditions that also run in Neurotypical families so I'm not really worried about them being "ignored". Research takes place regardless of Autism research. It is in fact very psychologically harmful to blame medical conditions on Autism when in fact many Neurotypicals are genetically prone to have medical conditions without Autism. Neurotypicals simply dismiss it as "bad genes" and not a defect of being Neurotypical; which is far more healthy from a mental health perspective.

It doesn't matter what someone's medical issue or disability is if mental health isn't a priority, without the mind the rest becomes irrelevant.

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