Group E-newsletter: Moral questions for autism researchers and a tribute to Dinah Murray | 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.
Autism Twitter this week addressed some tough ethical issues surrounding biomarkers and early intervention. The discussion started when Arianna Manzini, a research fellow in autonomous systems ethics at the University of Bristol in the UK, tweeted about her new review.
New @ TheJCPP paper on the #ethics of identifying #neural development markers for #autism. Many thanks to my co-authors @EmilyDevNeuro @TonyASDorAFC #MayadaElsabbagh #MarkJohnson and #IlinaSingh ???? Open Access at https://t.co/5kMD9vdvQV @NEUROSEC_Ox @BristolEthics pic.twitter.com/9C6yPF6fzw
– Arianna Manzini (@Arianna_Manzini) August 21, 2021
After reviewing the current research and analyzing its ethical implications, Manzini and her colleagues considered whether early interventions are as useful as many people think.
“If autism” symptoms “are indeed the result of necessary adjustments or responses to an atypical baseline, early intervention by these” symptoms “could have negative effects on other functions that they compensate for,” they wrote.
This section resonated with a pseudonymous autistic anesthetist on Twitter – and other autistic people and autism researchers alike.
This paper moved me to tears. Hopeful tears. Hope for our children, for future generations of autistic people.
“That begs the question of whether we should intervene early on in the development of autism, https://t.co/RyBuJtEJjQ
– The Autistic Doctor (@AutisticDoctor) August 23, 2021
Manzini and her colleagues made various recommendations, including ensuring that there is dialogue between autistic researchers, ethicists, autistic people and their families and that research on early intervention is multidisciplinary and integrates methods from the humanities and social sciences.
Autism researchers such as Elizabeth Shephard, Assistant Professor at the University of Nottingham in the UK, and Sue Fletcher-Watson, Professor of Developmental Psychology at the University of Edinburgh in the UK, praised the review as “excellent”.
Excellent new review on ethical aspects of longitudinal studies with infant siblings by @TonyASDorAFC @EmilyDevNeuro & colleagues
Thorough reflection on how best to use this work to help babies and their families with developmental difficulties. https://t.co/2nYx42Bu9Y
– Dr. Lizzie Shephard (@lizzieshephard) August 19, 2021
Another excellent piece and one that I hope will be influential.
On the ethics of early autism research. https://t.co/IPJ1m1YjNd
– Sue Fletcher-Watson (@SueReviews) August 19, 2021
The field also remembered autistic autism researcher Dinah Murray on Twitter this week, following up on a tribute in autism from Wenn B. Lawson, a lecturer at the University of Birmingham in the UK. Murray was visiting professor and tutor at the University of Birmingham, co-founder of the nonprofit Autism & Computing, and co-developer of the theory of monotropism, which describes the hyperfocusing and attraction of autistic people to restricted interests.
“I hope this letter draws attention to the breadth and depth of Dinah Murray’s transformative work and inspires more autism researchers to take on her legacy,” wrote Lawson.
A number of autism researchers tweeted about the letter and Murray’s contributions to the field.
I am very pleased to present this tribute to Dr. Dinah Murray to share
Dinah’s work as an activist and innovator is essential
But most importantly, I think, is their contribution to autism theory, monotropism.
I hope this helps draw academic attention to your work
– Sue Fletcher-Watson (@SueReviews) August 20, 2021
Thank you @WennLawson for sharing your memories and bringing back ours. Dinah was such a force (forever) and it was always a pleasure to talk to and learn from her. Very nice and funny too ????! https://t.co/XRzKD6cw9c
– Tony Charman (@TonyASDorAFC) August 22, 2021
Wenns Tribute underscores how far reaching Dinah has been and her legacy has stayed through autism research and beyond.
Read on to hear a friend’s reflection on such a passionate person who continues to inspire others. https://t.co/6ErwIqnCQ3
– Sarah O’brien (@Sarahmarieob) August 20, 2021
Fascinating letter from Dr. When Lawson, in honor of his great friend and collaborator, Dr. Murray. I hope there will be less of “Kanner and Asperger” and more of “Murray and Lawson” in the years to come. @WennLawson https://t.co/3HuKAvqPJF
– Dr. Becky Wood ???? (@thewoodbug) August 20, 2021
Finally, we have a great tweet of the week from Kristen Bottema-Beutel, associate professor at Boston College in Massachusetts, about advancing in academia.
Feel like a real researcher at last – I just got a peer review that tells me I am misinterpreting the research by Bottema-Beutel and colleagues.
– Kristen Bottema-Beutel (@KristenBott) August 23, 2021
Noah Sasson, Associate Professor of Behavioral and Brain Sciences at the University of Texas at Dallas, gave Bottema-Beutel the perfect answer for the reviewer.
“In response to Reviewer 2 who claims we misinterpreted Bottema-Beutel’s research, I actually spoke to her this morning and it’s clear we didn’t do anything like that. However, my children asked themselves why mom was talking to herself. “
– Noah Sasson (@Noahsasson) August 23, 2021
Don’t forget to sign up for our webinar on August 31st with Laurent Mottron, Professor of Psychiatry at the University of Montreal in Canada, who wants to discuss “a radical change in our autism research strategy.”
You can also now sign up for a September 28 webinar where Jeremy Veenstra-VanderWeele, professor of psychiatry at Columbia University, shares goals in developing new drugs for autism – and the barriers researchers may encounter.
That’s it for this week’s community newsletter from Spectrum! If you have any suggestions for interesting social contributions in the field of autism research, feel free to email me at firstname.lastname@example.org. We meet next week!