My son Jonah, who turned 24 yesterday, has severe autism. He suffers from several comorbidities and also suffers from very difficult behavior that nearly at the age of 9 he required a year of hospital treatment.
This is the thumbnail description I’ve been using to describe my son for over ten years. Efficient and accurate, it adequately conveys Jonah’s level of disability without mentioning more worrisome details such as scratches, bruises, bite marks, and broken windows. holes in drywall. Nearly fatal elopement into traffic.
However, according to a language guide recently published by neurodiversity advocates (see, for example, Bottema-Beutel et al., Monk et al., and Dwyer et al.), this harmless and highly sanitized explanation: It is ‘candidate’, ‘disdainful’ and ‘dehumanizing’. Because it uses some words that they demand to be removed from research and clinical discourse. The only uncontroversial part of these two sentences of his is Jonah’s age. This says virtually nothing about his life or ours.
Medicalized language is under attack by neurodiversity advocates
The language controversy in autism is nothing new. The debate over whether to use “person with autism” or “person with autism” dates back to 2011 or earlier. What is new, however, is a clear move on behalf of neurodiversity advocates to remove “medical/deficit-focused” language from research and clinical practice and replace it with “neutral” terms. .
The list of prohibited words includes, in addition to the words above, references to disruptive behavior, high/low functioning, symptoms of autism, psychopathology, and the economic cost of autism. ($2.4 million per person over a lifetime if the impact is more severe). For someone who is very aggressive and self-harming, it may be much higher).
In response to these censorship demands, Pediatrics—Allison Singer and Alicia Halladay of the Autism Science Foundation, in collaboration with me and Jill Escher of the Severe Autism National Council, wrote the response.”A Full Semantic Toolbox Is Essential for Autism Research and Practice to Thrive” was published last month in the journal autism research.
Why linguistic policing is harmful
In this work, we make three important points.First, autism defined as an obstacle to Diagnostic and Statistics Manual (DSM-5) If the Lancet Commission’s 2021 report is correct, tens of millions of people around the world are experiencing it. Their significant cognitive impairment, speech impairment, and perseverative behavior are non-neutral. The aggressive and self-harming behavior exhibited by more than half of people with autism is clearly not neutral. Describing these as neutral would not only require elaborate discourse distortions, but more importantly, remove the urgency from these highly ineffective symptoms and minimize their impact on life outcomes. Well-designed research and appropriate clinical application will allow us to develop precise and meaningful terms that do not gloss over these limiting or dangerous symptoms as mere “features” or “characteristics.” Depends on shared set.
This does not deny that some autistic patients do not view their diagnosis as a disorder, but rather as an ‘integral aspect of identity’ as in Monk et al. report. As we noted in our editorial, researchers conducting research focused on this end of the spectrum should fully consider their own language preferences.But No faction represents the entire autism community. This is very heterogeneous and full of disagreements. Bottema-Beutel et al. Without acknowledging how competent it is to bring to the fore the preferences of a particular group of people with autism—those who can fill out surveys, participate in interviews, and write articles for magazines—” about the need to “prioritize the perspectives of people with autism.” Nowhere does it mean that people on the severe end of the spectrum care less about language because their cognitive impairment is too severe to understand abstract concepts like ‘risk’ and ‘need for advanced support’. Not allowed. Also, parents of children with severe autism were not consulted about the usefulness of “medical language” in describing their family’s experiences.
Finally, I point out the horrific effects of such censorship on research targeted at those who need it most. Researchers have seen grant proposals and articles rejected simply because they violate neurodiversity language guidelines. Also, young researchers who fear public criticism are reconsidering their professional choices. We already know that since the 1990s, the amount of research focused on the serious end of the spectrum has declined by two-thirds of his. Prohibiting researchers from honestly discussing the realities of severe autism will only exacerbate this trend.
How Should Researchers Respond?
We received a lot of unpublished support from the research community in response to our article. But that’s not enough. Ultimately, researchers themselves must resist these attempts and control the direction of autism research. We must reject the absurd analogy that compares to a racist adjective.
Many academics are reluctant to speak out, for fear of being branded an “alt-right,” as I was, a lifelong Democrat. For example, Stanford University’s IT department has politically criticized an extensive 13-page language guide that bans the use of common words such as “addict,” “paraplegic,” “old age,” and “brave.” ridiculed across the spectrum. , “man”, “American”, “submit”, “survivor”, “kill two birds with one stone”, “rule of thumb”, “do your best”, etc. Even a progressive critic, The Young Turks, denounced the list as “insane,” admitting that the word “insane” was on the list, but telling viewers of the YouTube news show that it was. , and urged the person responsible for editing it to: “Get out of the faculty lounge and take a closer look at the real world around them.”
The real world is also an appropriate focus for language in autism research. Even if researchers, clinicians, and policy makers choose not to account for the many ‘flaws’ and ‘challenging behaviors’ experienced by people with ‘severe’ autism, episodes of self-harm You can’t stop one, expand your vocabulary one word, or develop one skill. Allow highly dependent autistic adults to enjoy a little bit of autonomy. What it does do is further marginalize those who are no longer able to accurately describe their experiences, those whose autism has never been, and never will be, ‘neutral’.
