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Community Newsletter: Helping autistic adults thrive, grant funding for people with profound autism

by  /  11 September 2022
A doctor talks with his patient in an office.

“How can autistic adults thrive? This should be one of the questions at the heart of autism research,” tweeted Liz Pellicano, professor of autism research at University College London in the United Kingdom, sharing a link to her review paper, co-authored by a team of autistic and non-autistic researchers, in which they “propose an alternative way of approaching adult autism research.”

The authors identified “issues to which researchers, clinicians and policymakers should respond” by applying a ‘capabilities approach,’ which focuses on 10 core elements of a thriving human life, to research on autism in adulthood.

The Twittersphere did respond, in too large a number to share it all here, but here are some highlights.

Wonderful review and summary of @AutismINSAR Keynote,” wrote Tony Charman, professor of clinical child psychology at King’s College London in the U.K. He pointed out that one challenge will be how to “integrate these views into still-helpful conventional biomedical (sic) paradigms.”

“Looking forward to discussing that challenge with you …” Mary Doherty, founder of Autistic Doctors International and consultant anesthetist at Our Lady’s Hospital in Navan, Ireland, tweeted in response to Charman.

Also in response to Charman, a charity organization called the Autistic Girls Network tweeted that by listening to autistic adults, one might find that “a) it’s not such a challenge and b) some of those conventional biomedical paradigms are not helpful for the neurodivergent portion of the population.”

In another response to Pellicano, Twitter user Cos, an autistic speaker, trainer and consultant on autism and aging, tweeted that this kind of holistic research is essential, and “the facts about #adult #autistic QoL need to be established & relevant questions asked. Then we can use the evidence to highlight the health & social inequalities we’re subjected to.”

“This paper is a brilliant examination of the ways that research and policy can support autistic adults,” Eliza Eaton-Stern, autism community outreach coordinator at the University of Cambridge in the U.K., replied in a quote tweet, adding that she is a fan of strengths-based approaches.

Rachel Morgan-Trimmer, a neurodiversity consultant, pointed out that even the presentation of the paper is autism-friendly, “combining stats and useful info with beautifully created words from autistic people.”

On a related note, supporting people with autism throughout life is one of the areas within autism research that just received an influx of funding from the National Institutes of Health (NIH).

“Both excited to see some more aging research being funded AND simultaneously disheartened not to see a grant funded with commitment to our highest need individuals with profound autism,” Cassie Stevens, a doctoral student and autism researcher, tweeted about the new NIH funding, adding that this population doesn’t have a voice to “tell NIH just how hung out to dry they are.”

“Channel that energy and do wonders for this community both scientifically and from a policy standpoint,” tweeted Kritika Nayar, a pediatric neuropsychology fellow at the Autism, Assessment, Research, Treatment and Services Center at Rush University Medical Center in Chicago, Illinois.

Zack Williams, a medical and doctoral student at Vanderbilt University in Nashville, Tennessee, who tweeted his excitement to be part of a team receiving funds from the NIH grant, also replied to Stevens, writing, “I’d argue that given the prevalence (and impact) of sleep problems in profound autism, the Stanford ACE (and particularly the intervention piece) may very well be of substantial utility to that segment of the population.”

“It’s also possible that centers include more relevant aspects than came across in the tiny summary of 500+ page grants,” added Carla Mazefsky, associate professor of psychiatry and psychology at the University of Pittsburgh in Pennsylvania, who leads Williams’ research team.

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 [email protected].

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Cite this article: https://doi.org/10.53053/HQVO3726