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Community Newsletter: Participatory research, burnout, sleep Kismet

In this week’s Community Newsletter, we talk about a participatory research study on burnout and get meta with a study on participatory research itself.

By Chelsey B. Coombs
13 June 2021 | 5 min read

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

We’re starting this week with a study in Autism that looks at researchers’ views on and experiences of including autistic people in study decision-making. Laura Crane, deputy director of the Centre for Research in Autism and Education at University College London in the United Kingdom, tweeted a thread summarizing the results.

“If you want to do it properly, you have to invest time and effort in working with these communities, and helping them, and doing things with them that simply isn’t of benefit to you in research terms, but actually builds a relationship and a rapport, and getting to know them better,” one established researcher said.

Sarah O’Brien, a research and policy officer at the U.K.’s national autism research charity Autistica, tweeted that it was a “great exploration of the tensions” of participatory research.

Another Autism study that received a lot of attention on social media this week used participatory research to better understand autistic burnout.

Meng-Chuan Lai, assistant professor of psychiatry at the University of Toronto in Canada, made note of the definition of autistic burnout used in the paper.

Though autistic people often mention burnout on social media, there are few studies on burnout in the literature, the researchers note. Burnout, they say, may often be the result of autistic people camouflaging their traits to fit in in an “unaccommodating neurotypical world.”

“Clinical understanding is key to accessing support not dismissal of concerns,” O’Brien tweeted.

Finally, a new study in Science Advances looks at sleep disturbances in autistic people with mutations in CHD7 and CHD8 through the lens of a Drosophila model with mutations in an analogous fly gene called Kismet. Annette Schenck, professor of translational genomics of neurodevelopmental disorders at Radboud University in Nijmegen, the Netherlands, and paper co-author, tweeted about the research.

The researchers showed that Kismet mutations during development disrupt glial cells in the blood-brain barrier and lead to hyperserotonemia, or high levels of serotonin, and sleep disturbances in the flies. Spectrum covered the connection between hyperserotonemia and autism last week.

A version of a sleep-restriction therapy used in people can restore typical sleep patterns in the flies. “Time for a paradigm shift” when it comes to treating sleep issues in autistic people, Schenck writes.

“Can’t wait for post covid invite to the Netherlands,” the lab of study co-author Matthew Kayser, assistant professor of psychiatry at the University of Pennsylvania in Philadelphia, joked.

Krishna Melnattur, incoming assistant professor of psychology and biology at Ashoka University in Sonipat, India, wrote that it was a “very nice story on sleep defects.”

That’s it for this week’s Spectrum 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!