Neighborhood E-newsletter: Controversial ‘value of autism’ paper, ‘medical doctors’ communicate,’ double empathy defined | 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.
A new article in the Journal of Autism and Developmental Disorders caused a big stir on Twitter this week.
“Rising prevalence, the shift in costs that are dominated from child to adult, the transfer of costs from parent to state, and rising overall costs raise pressing policy issues and require an urgent focus on prevention strategies,” the researchers write.
The paper’s first author is Mark Blaxill, Chief Financial Officer of the Holland Center, a Minnesota-based day care program for autistic children and young adults, and editor of the Age of Autism website, which publishes frequently anti-vaccination content.
Many autism researchers used Twitter to denounce the study.
Michelle Dawson, an autism researcher at the Hôpital Rivière-des-Prairies in Montreal, Canada, wrote that the work was “baseless” and “outrageous”.
“In the absence of a comprehensive plan to either increase revenue or prevent autism … does the cost of autism pose a serious threat to the US economic future”? https://t.co/BK4HOj9AwS published by JADD in 2021, unfounded, outrageous
– Michelle Dawson (@autismcrisis) July 19, 2021
Kristen Bottema-Beutel, associate professor at Boston College in Massachusetts, tweeted about a conflict of interest that was not disclosed in the “garbage article”.
For anyone interested in how COIs and scientific publications work, the article mentioned below is already being promoted on the author’s blog website – the same website where they raise funds and monetize content through ads. https://t.co/jEfJwJ3ScQ https://t.co/XpZB4GueSH
– DR. Kristen Bottema-Beutel (@KristenBott) July 19, 2021
David Mandell, Professor of Psychiatry and Pediatrics at the University of Pennsylvania and Editor-in-Chief of Autism, replied to Dawson, “It’s difficult to know where to start analyzing how bad this study is. The basic assumptions are demonstrably wrong. “
It’s hard to say where to start to analyze how bad this study is. The basic assumptions are demonstrably wrong. I am currently working on writing an answer.
– David Mandell (@DSMandell) July 19, 2021
Daniel Sohege, director of Stand for All, a UK consultancy that “focuses on human, refugee and migrant rights,” tweeted, “I’ve heard a lot of people discuss eugenics in relation to autism, but this is the first time I’ve had seen it being advocated effectively to save money. “
Holy crap. I’ve heard many people discuss eugenics in relation to autistic people, but this is the first time I’ve seen it being advocated effectively to save money. Well, thank you for putting a price on our lives folks. You could kindly go on jogging now. https://t.co/MG3Da0Ye7d
– Daniel Sohege ???? (@stand_for_all) July 21, 2021
Spectrum plans to release more of the response to this paper soon, so stay tuned.
Our next thread is from Melissa Chapple, a research fellow in sociology at the University of Warwick in Coventry, England. She and Joanne Worsley, a research fellow at the Institute of Population Health at the University of Liverpool in England, commented on the change in terminology clinicians are using to reflect the preferences of the autistic community.
???? New paper ???? – Comment with @ joanneworsley9 on criticism of the linguistic framing of autism / autistic people that emerged from the medical model / discrepancies between language used in health care facilities and the autistic community co / EEMacqoMMB
– Melissa Chapple (@melissachapple) July 21, 2021
In the work, they examine the history of the medical model of the disease and how it led to a language that divides autism into categories such as “high functioning” and “low functioning”. There is little evidence that “these typologies add value to our understanding of autism,” they argue, among others. “Highly functional” labels can play down disabilities and people’s needs, they state, while “low-functional” labels can make people appear as if they have a reduced value or their skills.
Finally, I’d like to let you all know about a new Spectrum Explainer on Double Empathy, a topic we covered many times in the community newsletter.
Noah Sasson, Associate Professor of Behavioral and Brain Sciences at the University of Texas at Dallas, who was interviewed for the article, tweeted that it “has many useful links to evidence from primary sources.”
Great new piece by @RachelZamzow for @Spectrum on the problem of double empathy. Includes quotes from me, @milton_damian, and others. Contains many useful links to primary references. https://t.co/GbcoLgyimj
– Noah Sasson (@Noahsasson) July 22, 2021
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 chelsey@spectrumnews.org. We meet next week!
