Hello, and welcome to this week’s Community Newsletter! I’m your host, Chelsey B. Coombs, Spectrum’s engagement editor.
A flurry of tweets this week touted a new Autism study from researchers at McGill University in Montreal, Canada.
How can we create inclusive methods to capture experiences of autistic youth w/ diverse cognitive & language abilities?@ValrieCourchesn,@RackebT et al explored new ways to amplify the voices of autistic youth across the spectrum
???? by @ValrieCourchesnhttps://t.co/a18KNJgIpe
— Autism Journal (@journalautism) September 6, 2021
The researchers piloted a new protocol, called “Autism Voices,” for collecting the first-person perspectives of young autistic people. The method involves surveying parents or caregivers to develop a semi-structured interview tailored to an autistic person’s communication preferences and needs. The researchers used picture cards, for example, and participants could answer by writing, texting with emojis, drawing, pointing, speaking or using augmentative or alternative communication devices.
Autistic participants had the most positive experiences with the most flexible interviewers, who might ask an unanswered question in a different way before moving to the next one. And participants who were minimally verbal or intellectually disabled were able to offer their own perspectives so long as their needs were taken into account, the study found.
“This methodology and approach to engagement will ultimately lead to the empowerment of the autistic community and will promote their self-determination by including them as active stakeholders in research that affects them,” the researchers wrote.
The paper highlights that it's feasible to include youth across the spectrum in participatory research. While minimally verbal or intellectually disabled participants tended to communicate in unconventional ways, they still communicated, were engaged and had things to say!
— Autism Journal (@journalautism) September 6, 2021
Michelle Dawson, an autism researcher at Hôpital Rivière-des-Prairies in Montreal, Canada, quoted the study directly.
A new protocol ("Autism Voices") for interviewing autistics aged 11-18, pilot study, free https://t.co/LtFrsxTreL "Our communication codes and processes allowed for an in-depth analysis of what otherwise could have been considered unsuccessful interviews"
— Michelle Dawson (@autismcrisis) September 4, 2021
The Olga Tennison Autism Research Centre at La Trobe University in Melbourne, Australia, tweeted that it is important such work continues.
So important that work continues on different ways that the voices of autistic people can be heard, given their communication differences https://t.co/PxEOGYrqHd
— Olga Tennison Autism Research Centre (OTARC) (@OlgaTennison) September 6, 2021
Elsewhere on Twitter, researchers raved about a new resource published in Cell that combines chromatin and transcriptional profiles in the developing human cerebral cortex.
Now online! Chromatin and gene-regulatory dynamics of the developing human cerebral cortex at single-cell resolution https://t.co/J2yiThzFDm
— Cell (@CellCellPress) August 13, 2021
PlumX Metrics shows the paper’s social media splash.
Investigator Sergiu P. Pasca, associate professor of psychiatry and behavioral sciences at Stanford University in California, thanked his collaborators on the research, which he described as an “effort to understand the logic of lineage progression & map #autism mutations.”
Our work on human cortical development is in @cell today. Effort to understand the logic of lineage progression & map #autism mutations Collab work with @WJGreenleaf
Led by????: Alex @atrev_bio & Fabian (@EpigenomeI) & Jimena (@jimena_andersen) & Laksshman https://t.co/kZ3IxAha2V pic.twitter.com/NXb4YAvpWD
— Sergiu P. Pasca (@PascaStanford) August 14, 2021
Ashley Watson, senior scientist at STEMCELL Technologies, called it an “incredible resource.”
Incredible resource. I'm particularly fascinated by the analysis method used to prioritize ASD mutations, and the finding that CTCF motifs were frequently disrupted in cases v. controls. Another clue that chromatin architecture is critical component of ASD pathogenesis? https://t.co/mwia62dBIu
— Ashley Watson (@lashleywatson) August 20, 2021
And Yang Luo, instructor of medicine at Harvard University, commented on the “many cool methods to dive into.”
great work from @PascaStanford& @WJGreenleaf lab.Paired chromatin and transcriptional profiling in developing (human) brain.Many cool methods to dive into.Resources for predicting cell-type specific activity at single nucleotide res.https://t.co/Gj3EHDHZj1 https://t.co/JcQ87QtNRQ pic.twitter.com/WioRnNigaU
— Yang Luo (@yluo86) August 16, 2021
If you missed our 31 August webinar with Laurent Mottron, professor of psychiatry at the University of Montreal in Canada, you can now watch it on our site.
And don’t forget to register for our 28 September webinar, featuring Jeremy Veenstra-VanderWeele, professor of psychiatry at Columbia University, who will speak about goals for developing new drugs for autism — and the barriers researchers may encounter.
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!
Cite this article: https://doi.org/10.53053/DUZE8641