By bobb | Thu, 9/2/2023 - 08:40
hands holding megaphones pointed at each other

Rachel Zamzow

Sometimes acrimonious debate is playing out in scientific papers, at conferences, and on social media

A long-smoldering debate among scientists studying autism has erupted. At issue is language—for example, whether researchers should describe autism as a “disorder,” “disability,” or “difference,” and whether its associated features should be called “symptoms” or simply “traits.” In scientific papers and commentaries published in recent months, some have decried ableist language among their colleagues whereas others have defended traditional terminology—with both sides saying they have the best interests of autistic people in mind. The vitriol is harming the field and silencing researchers, some fear, but others see it as a long-overdue reckoning.

Since autism’s earliest descriptions in the academic literature as a condition affecting social interaction and communication, researchers and clinicians have framed it as a medical disorder, with a set of symptoms to be treated. Historically, autistic children have been institutionalized and subjected to treatments involving physical punishment, food restriction, and electric shocks. Even today, the most widely used autism therapy—applied behavior analysis—is seen by some as a harmful tool of normalization. Many autistic people and their families have instead embraced the view that their difficulties lie not with their autism, but with a society that isn’t built to support them.

But according to some autism researchers, the field still too often defaults to terms with negative connotations. For example, in addition to “symptom” and “disorder,” many scientists use the term “comorbid” rather than the more neutral “co-occurring” to describe conditions that tend to accompany autism. Similarly, some argue the oft-used phrase “people with autism,” as opposed to “autistic person,” can imply that autism is necessarily an unwanted harmful condition.

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.

But, Botha says, “Civility is only possible when there is an equal playing field,” which can’t exist, they say, as long as the field marginalizes autistic people. Zeroing in on the heated nature of the debate is to “entirely overlook what autistic people are saying or protesting.”

Some hold more moderate positions, such as Zack Williams, an M.D.-Ph.D. candidate in neuroscience at Vanderbilt University. “If we have the appropriate language to say something in a neutral and nonoffensive way, we should do it by default,” says Williams, who is autistic and a co-author of the letter to the editor responding to Singer’s commentary. But, “If someone goes and says ‘autism spectrum disorder,’ they shouldn’t be canceled,” he says; the focus should be on whether and how the research is helping autistic people.

Others say the field is too fractured to even try to resolve the divide. “I think that we don’t have a unified field anymore, and I think the sooner we recognize that the less pain will be there,” says Helen Tager-Flusberg, a psychologist at Boston University. Tager-Flusberg, who is nonautistic, and others say one source of the friction is the use of a single set of terms for an extremely heterogeneous condition. She argues for splitting the field and adopting separate terminology. But the autistic community largely thinks dividing them into groups such as “high-” or “low-functioning” is harmful and unnecessarily segregating, according to a December study exploring the language preferences of 654 English-speaking autistic adults across 30 countries.

“I don’t get why we can’t have common ground,” says Bottema-Beutel, who is nonautistic. “I don’t think that anyone who is saying we should avoid dehumanizing language is saying we should avoid accurately describing people and what they need.”

“Why not just be specific?” Botha asks. For example, if a study’s sample includes autistic people who are nonspeaking, have intellectual disability, and require supported living, just say that. Phrasing like this doesn’t minimize the very real challenges some autistic people experience—but it also doesn’t dehumanize them, Botha says. “Specificity is always going to be more rigorous and accurate than generalization.”