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Illustration by Laurène Boglio
Illustration by Laurène Boglio

Community Newsletter: Autistic researcher strengths, challenging the medical research model

In this week’s Community Newsletter, we dive into two studies that look at how the autism research paradigm could become more inclusive.

Hello, and welcome to the Community Newsletter! I’m your host, Chelsey B. Coombs, Spectrum’s engagement editor.

We’re beginning this week with a paper on autistic researcher strengths by Aimee Grant, senior research officer in public health at Swansea University, and Helen Kara, honorary senior research fellow in social sciences at the University of Manchester, both in the United Kingdom.

Grant and Kara, both late-diagnosed autistic researchers, consider how the strengths they found in a literature review and in their own professional experiences can be applied more generally to all autistic researchers.

“Despite over 50 years of Disability research activism, Disabled people are still predominantly viewed as subjects of research, not as researchers,” they wrote.

Grant and Kara highlight an approach called the Autistic Advantage, which asserts that autistic researchers can hyperfocus, pay great attention to detail and think creatively in ways non-autistic people do not. They also describe how employers can help autistic researchers flourish at work.

Bill Davies, professor of acoustics and perception at the University of Salford in the U.K., tweeted, “I think this might be useful as my university tries to become more inclusive.”

Alice Nicholls, a clinical psychologist in the U.K. who specializes in autism, tweeted that the paper is “another excellent example of how much #ActuallyAutistic people have to offer to their professions.”

The Disparity Reduction and Equity in Autism Services Lab at the University of Southern California, led by Amber Angell, assistant professor of occupational science and occupational therapy, tweeted, “We have so much more to offer beyond stereotypes and stigma!”

Our next study looked at what it would take to transform the medical model of autism science into a neurodiversity model.

“The mismatch between what is currently being researched, what community members want from research and who gets to make these decisions may well be contributing to the growing distrust of mainstream autism science by the broader community,” wrote Liz Pellicano, professor of educational studies at Macquarie University in Sydney, Australia, and Jac den Houting, a research associate in education at the university, echoing a recurring sentiment.

Pellicano and den Houting wrote that although the predominant medical model has “been a key tool in shaping autism science,” its deficits-based view has “placed too many limits on our knowledge of autism and how that knowledge is derived.” Taking neurodiversity seriously, they wrote, means changing how the next generation of autism researchers is educated.

Tony Charman, professor of clinical child psychology at King’s College London in the U.K., tweeted that the study is an “essential primer.”

Alice Laciny, a postdoctoral fellow at the Konrad Lorenz Institute for Evolution and Cognition Research in Klosterneuburg, Austria, tweeted her excitement about the paper as well.

​​Register for the 29 November Spectrum webinar, featuring Ari Ne’eman, a doctoral student in health policy at Harvard University and president and co-founder of the Autistic Self Advocacy Network. Ne’eman will speak about ways to assess clinical progress in autistic people that don’t also promote that they ‘pass’ as non-autistic.

You can now watch our 28 October webinar featuring Zachary J. Williams, a medical and doctoral student at Vanderbilt University in Nashville, Tennessee, who spoke about measuring alexithymia in autistic people.

That’s it for this week’s Community Newsletter! If you have any suggestions for interesting social posts you saw in the autism research sphere, feel free to send an email to me at [email protected]. See you next week!