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Key points
- Neurodiversity advocates have attempted to strip research and clinical practice of “medical/deficit-focused” language related to autism.
- One group of self-advocates should not speak for the entire autism community, which consists of many diverse stakeholders.
- A broad vocabulary is necessary to reflect the extraordinarily broad range of autism presentation.
My son Jonah, who turned 24 yesterday, is severely autistic. He suffers from several comorbid conditions, as well as extremely challenging behaviors that necessitated almost a year of inpatient treatment when he was 9 years old.
This is the thumbnail description I’ve used to describe my son for more than a decade. Efficient and accurate, it conveys a good sense of the level of Jonah’s impairment without going into some of the more disturbing details: scars, bruises, bite marks, broken windows. Holes in the drywall. Near fatal elopements into traffic.
Yet, according to language guides issued recently by neurodiversity advocates (see Bottema-Beutel et al., Monk et al., Dwyer et al. as examples), this innocuous and fairly sanitized description is “ableist” “derogatory” and “dehumanizing,” because it uses several words they demand be stripped from research and clinical discourse: severe, suffers, comorbid, challenging, treatment. The only unobjectionable part of those two sentences is Jonah’s age—which tells you virtually nothing about his life, or ours.
Medicalized Language Under Attack by Neurodiversity Advocates
Language debates in autism are not new. Arguments about whether to use “person with autism” or “autistic person” date to 2011 or even earlier. But what is new is this explicit move on behalf of some neurodiversity advocates to strip research and clinical practice of “medical/deficit-focused” language and replace it with “neutral” terms.
The list of prohibited words includes, besides those listed above: disruptive behavior, high/low functioning, autism symptoms, psychopathology, and any reference to the economic costs of autism ($2.4 million lifetime per person for the more significantly impacted, in case you’re curious, although for those with extremely aggressive and self-injurious behaviors, it may be much higher).
In response to these demands for censorship—which have been published in esteemed journals like Pediatrics—Alison Singer and Alycia Halladay from the Autism Science Foundation worked with myself and Jill Escher from the National Council on Severe Autism to write a response. “A Full Semantic Toolbox Is Essential for Autism Research and Practice to Thrive” was published last month in the journal Autism Research.
Why Language Policing Is Harmful
In this piece, we make three key points.
The first is that autism is defined as a disorder in the Diagnostic and Statistical Manual (DSM-5) and experienced as such, if the Lancet Commission’s 2021 report is correct, by tens of millions of people around the world. Their significant cognitive impairments, language deficits, and perseverative behaviors are not neutral. The aggressive and self-injurious behaviors exhibited by more than half of autistics are definitely not neutral.
To describe these as neutral would not only require elaborate discursive contortions but would, even more importantly, strip these extraordinarily disabling symptoms of their urgency and minimize their impact on life outcomes. Well-designed research and appropriate clinical application depend on a shared set of accurate, meaningful terms that do not sugarcoat these restrictive or even dangerous symptoms as mere “features” or “traits.”
This is not to deny that some autistics see their diagnosis not as a disorder but as “an inseparable aspect of identity,” as Monk et al. report. As we note in our editorial, researchers whose work focuses on this end of the spectrum should absolutely consider their language preferences. But no faction should speak for the entire autism community, which is extremely heterogenous and fraught with disagreement.
Bottema-Beutel et al. speak of the need to “prioritize the perspectives of autistic people” without acknowledging how ableist it is to foreground the preferences of one particular group of autistic people—those who can fill out surveys, participate in interviews, and write journal articles. Nowhere is it acknowledged that those on the severe end of the spectrum very likely couldn’t care less about language, often because their cognitive impairments are too severe to understand abstract concepts like “risk” or “high support needs.” And no parents of severely autistic children were consulted about the utility of “medicalized language” in describing their family’s experiences.
Finally, we point out the chilling effect such censorship will have on research targeted at those who need it most. It’s already happening: Researchers have seen their grant proposals and articles rejected simply for violating neurodiversity language guidelines. And young researchers, reluctant to invite public censure, are reconsidering their choice of specialization.
We already know that the amount of research focused on the severe end of the spectrum has dropped by two-thirds since the 1990s. Banning researchers from honestly discussing the realities of severe autism will only exacerbate this trend.
How Should Researchers Respond?
We’ve received much private support from the research community in response to our piece. But that won’t be enough. Ultimately, researchers themselves need to push back against these attempts to muzzle them and thus control the direction of autism research. They need to reject the ridiculous analogy, offered by one of our critics, that compared prohibited words with racial epithets.
Although many researchers are loath to speak up because they fear being branded—as I, a lifelong Democrat, have been—as “alt-right,” even some progressives have become alarmed at recent surges in language policing. Stanford University IT, for example, was roundly mocked across the political spectrum for its extensive, 13-page internal language guide, which prohibits the use of a host of common words, including “addicted,” “paraplegic,” “senile,” “brave,” “man,” “American,” “submit,” and “survivor” as well as expressions such as “killing two birds with one stone,” “rule of thumb,” and “take your best shot.” Even the progressive pundits The Young Turks blasted the list as “insane”—while acknowledging that the word “insane” was on the list—and advised watchers of its YouTube news program to “ignore” it, while urging those responsible for compiling it to “step out of the faculty lounge and take a good hard look at the real world around them.”
The real world is an apt focus for language in autism research as well. Keeping researchers, clinicians, and policymakers from describing the many “deficits” and “challenging behaviors” experienced by those with “severe” autism won’t stop one episode of self-injury, expand vocabulary by one word, or develop one skill that might allow a profoundly dependent autistic adult to enjoy even a tiny bit of autonomy. What it will do is further marginalize those whose experiences can no longer be accurately articulated—those for whom autism has never been, and will never be, “neutral.”
