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Wednesday, February 8, 2023

Terminology Fights

 From the preface to The Politics of Autism.

A major theme of this book is that just about everything concerning autism is subject to argument. There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.[i] Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.[ii] For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side. I can only say that I mean no offense.

Rachel Zamzow at Science:
In a recent survey of 195 autism researchers, 60% of responses included views about autistic people the study authors deemed dehumanizing, objectifying, or stigmatizing. Some responses described autistic people as “shut down from the outside world” or “completely inexpressive and apparently without emotions,” according to the November 2022 Frontiers in Psychology study. “What is worse than I thought was how blatant a lot of the content was, which shows that, for [a] large proportion of participants, they did not consider the things they were saying to be problematic at all,” says lead author Monique Botha, a psychologist at the University of Stirling.

Ableist language and the mindset that underlies it also trickles down to study design, says Botha, who is autistic. In studies testing autism interventions, for example, researchers rarely track adverse reactions such as physical harm or psychological distress, found a 2021 study led by Kristen Bottema-Beutel, who studies special education at Boston College. This oversight suggests many researchers see autistic people as less than human, Botha says. “It’s one of the most pervasive practices that genuinely keeps me up at night.”

At the same time, others argue that making certain terms off-limits stifles the scientific process. “If you can’t use words like ‘challenging behaviors’ or ‘severe disorder’ or ‘symptoms’ or ‘comorbid disorder,’ then how are you supposed to study those things?” asks Alison Singer, president of the Autism Science Foundation, who laid out these concerns in a December 2022 commentary in Autism Research. Singer and others, including her three co-authors, fear that using neutral terminology—such as “traits” or “features” in place of “symptoms”—downplays the experiences of autistic people who, like Singer’s daughter, have significant difficulty communicating, intellectual disabilities, or critical health concerns. It “trivializes the severity of autism,” says Singer, who is nonautistic. Botha, Bottema-Beutel, and 61 other researchers, clinicians, and advocates have submitted a letter to the editor rebutting Singer’s commentary.

Singer and others also worry moving toward neutral language could lead major funding agencies to shift support from research exploring autism’s underlying biological causes and potential treatments to other sectors, such as services and supports for autistic people—though whether this would be a positive or negative change is also a subject of debate. For now, the bulk of funding for the field falls squarely on the side of biological research in the United States, as well as in the United Kingdom and Australia.

Amid the ongoing language dispute, researchers on all sides report coming under attack, in the form of vitriolic Twitter exchanges, remarks at conferences, and being shouted down during talks. This increasingly hostile environment threatens to drive some scientists out of the field altogether—something Botha says they have seen firsthand among autistic researchers.

“People are getting reluctant to give public presentations or to be too vocal about what they’re finding,” says David Amaral, a neuroscientist at the University of California, Davis, who is nonautistic. “Science is supposed to be about communication.” He wrote a December editorial in Autism Research, for which he is editor-in-chief, calling for civility across the board.