A pubmed abstract out this week Deficit, Difference, or Both? Autism and Neurodiversity brings the fourth entry in pubmed using the term “neurodiversity”. One other paper is in Portuguese, and another is from Sweden. That said, I am looking forward to reading this study. I say looking forward because when I checked the the full paper was not available yet. I know of the first author, though. Steven Kapp is an autistic researcher at UCLA. He is a member of the Autistic Self Advocacy Network (ASAN) and was on my list of people to speak with at IMFAR last year.
Here is the abstract.
The neurodiversity movement challenges the medical model’s interest in causation and cure, celebrating autism as an inseparable aspect of identity. Using an online survey, we examined the perceived opposition between the medical model and the neurodiversity movement by assessing conceptions of autism and neurodiversity among people with different relations to autism. Participants (N = 657) included autistic people, relatives and friends of autistic people, and people with no specified relation to autism. Self-identification as autistic and neurodiversity awareness were associated with viewing autism as a positive identity that needs no cure, suggesting core differences between the medical model and the neurodiversity movement. Nevertheless, results suggested substantial overlap between these approaches to autism. Recognition of the negative aspects of autism and endorsement of parenting practices that celebrate and ameliorate but do not eliminate autism did not differ based on relation to autism or awareness of neurodiversity. These findings suggest a deficit-as-difference conception of autism wherein neurological conditions may represent equally valid pathways within human diversity. Potential areas of common ground in research and practice regarding autism are discussed.
The Simons Foundation lists this paper as one of the “papers of the week“.
You can read more about the lead author, Steven Kapp, in the UCLA paper. The Daily Bruin article is Autistic student overcomes symptoms to help treat others. The story tells a little of his childhood and how he is now a graduate student researcher. And his plans for the future:
Eleven years later, Kapp is back at UCLA as a doctoral student in psychological studies in education. His goal is to become a professor and research ways to improve the quality of life and adaptive skills of people with autism.
The paper is based on an online survey and those are prone to biases. However, the paper does appear to address some important issues on the differences *and* the overlap between the medical model and neurodiversity approaches to autism. Further it doesn’t fall into the false-dichotomy trap of many neurodiversity discussions of seeing autism as deficit *or* difference. And, as we can see from the Daily Bruin article, Mr. Kapp is interested in researching ways to improve the quality of life for autistics.
I have hope that this is an article which can help to educate researchers (and others) about neurodiversity without the straw-men and misconceptions that are used by opponents. But, beyond that, the paper starts the dialogue in the literature of how to incorporate neurodiversity ideas into research and practice. Depending on how presented, this could be a very valuable paper.
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