Group Publication: Participatory analysis, burnout, sleep Kismet | Spectrum
Illustration by Laurène Boglio
Hello and welcome to this week’s community newsletter! I am your host, Chelsey B. Coombs, the engagement editor of Spectrum.
We’re starting this week with a study on Autism, looking at researchers’ views and experiences of including people with autism in study decisions. Laura Crane, Assistant Director of the Center for Research in Autism and Education at University College London in the UK, tweeted a thread summarizing the findings.
New #openaccess paper in @journalautism, by @Hr_pickard @liz_pellicano @JacdenHouting and me: Participatory Autism Research: Early Careers and Views and Experiences of Established Researchers. https://t.co/bkeBH8WBp6
– Laura Crane (@LauraMayCrane) June 5, 2021
One way to deal with expectations about power is through open discussion. However, our participants highlighted the challenges related to communication and noted that differences in communication styles can often lead to misinterpretations – double empathy problem! 6 /
– Laura Crane (@LauraMayCrane) June 5, 2021
Our researchers raised concerns about a perceived lack of diversity among the autistic people who contributed to the research, as a “core group” was constantly involved. We must stop equating participatory participation in research with research participation. 9 /
– Laura Crane (@LauraMayCrane) June 5, 2021
“To get it right, you have to put the time and effort into working with and helping these communities and doing things with them that are simply not beneficial to research but actually relationship and relationship and get to know them better, ”said an established researcher.
Sarah O’Brien, a research and policy officer at the UK’s national autism research charity, Autistica, tweeted that this was a “great study of the tensions” of participatory research.
This study, which really delves into the question of what participatory research within autism research looks like from a researcher’s perspective. Laura breaks down some of the key points in the thread or reads the open access paper ????
A great exploration of the tensions from PAR https://t.co/4fH6eOej1d
– Sarah O’brien (@Sarahmarieob) June 7, 2021
Another autism study that got a lot of attention on social media this week used participatory research to better understand autistic burnout.
New co-produced study defines #AutisticBurnout by experts with lived experience of #autistic Burnout Syndrome. Research by @ JulianneHiggi16 @drsamarnold @liz_pellicano @JanelleWeise @ 3DN_UNSW. @AutismCRC, @NationalAutism @Autismhttps: //t.co/UPLTAElIJd
One thread.
– Autism Journal (@journalautism) June 8, 2021
Meng-Chuan Lai, Assistant Professor of Psychiatry at the University of Toronto in Canada, noted the definition of autistic burnout used in the paper.
“Autistic burnout was defined as a severely debilitating disease characterized by exhaustion, withdrawal, problems of executive function and general impaired functioning, with increased manifestation of autistic features – and in contrast to depression”
https://t.co/J7qwf1fYh1
– Meng-Chuan Lai (@mengchuanlai) June 6, 2021
Although autistic people frequently mention burnout on social media, there are few studies on burnout in the literature, the researchers note. Burnout, they say, can often be the result of autistic people camouflaging their characteristics to fit into an “unsatisfied neurotypical world.”
#AutisticBurnout is debilitating and begins in connection with everyday stressors in an uncomfortable world. Research needs to validate definitions, important differences from @dora_raymaker et al (2020) results. Clinicians need awareness, standard treatments may be inappropriate.
– Autism Journal (@journalautism) June 8, 2021
“Clinical understanding is key to accessing support, not rejecting a concern,” O’Brien tweeted.
“More work is needed to differentiate autistic burnout from other diseases and to build a clinical understanding of the accompanying complexity that has to be considered when planning treatment.”
Clinical understanding is key to accessing support, not rejecting a concern. https://t.co/7UjFrRBQP5
– Sarah O’brien (@Sarahmarieob) June 6, 2021
Finally, a new study in Science Advances examines sleep disorders 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 Neurological Development Disorders at Radboud University in Nijmegen, Netherlands, and co-author of the article, tweeted about the research.
Our latest study appeared in @ScienceAdvances! The CHD8 / CHD7 / Kismet family links blood-brain barrier glia and serotonin with ASD-associated sleep disorders https://t.co/o917qFLF8o
– Annette Schenck (@annette_schenck) June 8, 2021
The researchers showed that Kismet mutations disrupt glial cells in the blood-brain barrier during development and lead to hyperserotonaemia or high serotonin levels and insomnia in the flies. Spectrum looked at the link between hyperserotonaemia and autism last week.
A human version of sleep restriction therapy can restore typical sleep patterns in flies. “Time for a paradigm shift” in the treatment of sleep problems in autistic people, writes Schenck.
Despite its developmental origin, kismet’s sleep fragmentation can be completely reversed in adulthood through a behavioral regimen similar to human sleep restriction therapy (SRT). In contrast to insomnia, SRT is rarely used in NDDs – time for a paradigm shift!
– Annette Schenck (@annette_schenck) June 8, 2021
“I can’t wait to invite you to the Netherlands after the Covid invitation,” joked laboratory co-author Matthew Kayser, assistant professor of psychiatry at the University of Pennsylvania in Philadelphia.
Last of 3 related studies in @ScienceAdvances that we’d love to participate in – congratulations @annette_schenck lab on the great job! Can’t wait for Post-Covid to be invited to the Netherlands ???? @ naihuagong are you coming ?? https️ https://t.co/eJOIJAk433
– KayserLab (@KayserLab) June 8, 2021
Krishna Melnattur, prospective assistant professor of psychology and biology at Ashoka University in Sonipat, India, wrote that it was “a very nice story about sleep disorders”.
A very nice story about sleep disorders related to the Charge Syndrome / Autism Spectrum Assoc. Gene CHD7 / CHD8 (Kismet in Flies, a much nicer name). Sleep disorders arise from a dysregulation of serotonin and can be reversed in adults with sleep restriction therapy https://t.co/JtkV8ACU3o
– Krishna Melnattur (@melnattur) June 9, 2021
That’s it for this week’s Spectrum Community Newsletter! If you have any suggestions for interesting social contributions in the field of autism research, feel free to email me at chelsey@spectrumnews.org. We meet next week!
