Neighborhood Publication: Ableism in autism analysis | 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.
This week we focus on conversations around an article by Monique Botha, an autistic postdoctoral fellow in psychology at the University of Stirling in Scotland. The Emotional Report offers an auto-ethnographic account of Botha’s experiences that goes beyond conversations about participatory research to examine how autistic researchers themselves are treated.
NEW PAPER (as promised):
“Academic, Activist, or Lawyer? Angry, Entangled, and Aspiring: A Critical Reflection on Knowledge Production About Autism ”https://t.co/oaML7Dzn7m
Welcome to what is probably a long thread ???? 1/
– Monique Botha #TransRights (@DrMBotha) September 28, 2021
“To be involved in autism research when you are autistic is to constantly experience the aggression of a field that has yet to come to terms with your own ableism,” wrote Botha.
The article highlights papers from 1974 to 2018 that dehumanize autistic people, some of whom liken them derogatory to animals.
“In general, it appears that neither monkeys nor children with autism – at least not as much as typically developing human children – have the motivation or the ability to psychologically share things with others. This means that both of them have only very limited abilities to shape things culturally with other people, ”says a cited paper from 2005.
How researchers have traditionally studied autism is inherently ableist, argues Botha, describing what it feels like when a non-autistic researcher tells an autistic researcher that they cannot be impartial. Spectrum wrote last year about how Botha and other autistic scientists are reshaping autism research.
It turns out that this is a bar we can never reach – we will never be seen as objective since we are naturally autistic, and it is designed that way because then we will have no way of seeing the status quo in Asking a question – and when you do, it’s as easy as shouting “objectivity” 19 /
– Monique Botha #TransRights (@DrMBotha) September 28, 2021
You can’t treat autistic people the way science has treated us and then claim that we are less objective, less logical, or less rational when we experience some form of emotional response to denial of our own humanity – which is boldness amazing 22 /
– Monique Botha #TransRights (@DrMBotha) September 28, 2021
Botha ends the article with a call to action for autism researchers: “Please, examine your own values, question them, cancel them, doubt yourself, acknowledge your fallibility, acknowledge your mistakes , apologize and reflexively deal with autism. “
Clare Harrop, assistant professor at the University of North Carolina at Chapel Hill, tweeted that “it’s one of the most powerful articles I think I’ll read this year.”
Read this paper from @DrMBotha
You will feel uncomfortable. It should. Take these feelings and channel them into more humane work.
It’s one of the most powerful articles I suspect I’ll read this year. https://t.co/488BvNXtoP
– Clare Harrop (@ClareHarropPhD) September 28, 2021
Kristen Bottema-Beutel, associate professor of teaching, curriculum and society at Boston College in Massachusetts, emphasized the need for non-autistic autism researchers to read and think about the work.
A must for anyone involved in autism research. Non-autistic autism researchers in particular need to spend some time thinking about it and looking at ways to change our field. https://t.co/RuUw3S5zp5
– Kristen Bottema-Beutel (@KristenBott) September 28, 2021
Hannah Belcher, a research fellow at King’s College London in the UK, tweeted that the paper was “all you as an autism researcher wanted to read”.
Everything you always wanted to read as an autistic autism researcher #AutisticsInAcademia https://t.co/w46Hni04cI pic.twitter.com/enEAcCnkL1
– Dr. Hannah Belcher (@DrHannahBelcher) September 28, 2021
Sarah O’Brien, Autism Research and Policy Officer at the UK’s national charity, Autistica, tweeted about the difficulty of “enforcing dehumanizing descriptions of people like you.”
Monique absolutely pegs the insider-outsider tension, she wears lots of hats while enforcing dehumanizing descriptions from people like you.
It is thanks to Monique and researchers in the same position that change is taking place. https://t.co/pORTavt8QP
– Sarah O’brien (@Sarahmarieob) September 28, 2021
Botha tweeted about the social media reaction to the article, saying it was “sad to see it resonate so much”.
I just wanted to thank everyone from the bottom of my heart for the exceptionally nice comments and reactions to this paper, the publication of which was terrifying – I’m happy to hear that it meant so much to people and also sad that it was so well received has, we shouldn’t feel like this https://t.co/4OZ3EQtTMm
– Monique Botha #TransRights (@DrMBotha) September 29, 2021
Elsewhere on Twitter, Andrew Whitehouse, professor of autism research at the Telethon Kids Institute in Western Australia, posted a statement in response to criticism of his team’s new study in JAMA Pediatrics, which found results on “preventive” behavioral therapy for babies with autism. Spectrum covered the paper last week.
pic.twitter.com/ZxG0rBlawI
– Andrew Whitehouse (@AJOWhitehouse) September 25, 2021
“Autism cannot be ‘prevented’ and this is not a goal the study authors believe in,” wrote Whitehouse. “The babies remain neurodivergent, but they do not show the same level of developmental barriers that lead them to meet the ‘deficient’ DSM-V diagnostic criteria for autism.”
Don’t forget to check out our September 28 webinar where Jeremy Veenstra-VanderWeele, Professor of Psychiatry at Columbia University, shared the goals of developing new drugs for autism – and the barriers researchers may face.
That’s it for this week’s 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!
Quote this article: https://doi.org/10.53053/CBWT7660
