YouTube discussion Neurodiversity Sanitizing Language

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Why can't we have the discussion about the elephant in the room here? Many of you identify as the opposite sex. That is a far greater issue in this world than being on the spectrum. But you don't want to talk about it in the light of day. Why is that?

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.

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 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 Pediatric 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 couldn’t care less about language because their cognitive impairments are too severe to ever 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.

The current study included 1584 children and adolescents with ASD enrolled in the Autism Treatment Network (ATN). The ATN is multi-site network of 17 autism centers across the US and Canada focusing on best practices and standards of care for ASD treatment, and includes a large clinical registry. Data for the current study were collected upon enrollment into the ATN clinical registry. Diagnosis was established at enrollment using a standard battery, including clinical interview, the Autism

A Psychology Today column with the same point of view as the youtube video in the OP. This is not a surprise as the author Amy Lutz is a cofounder of the National Council of Severe Autism with Jill Escher the person who appeared in that video. Amy Lutz also appears in the documentary In a Different Key.
Fighting Censorship in Autism Discourse


A couple of claims made by the author peaked my interest. One was the claim that over 50 percent of autistics engage in aggressive and self inhjorous behaviors.
This claim is based on this study
The study is a decade old.

Adults were not involved in this study. Nowadays Autism Speaks is heavily involved. It is hard to know what it took to get in their clinics a decade ago, so it is hard to say for certain how much of the autistic spectrum was not involved in the study.

The other claim is the amount of research into severe autism has dropped by two thirds. This is based on this study
What dropped by two thirds is the percentage of Autism studies between 1991 and 2013. During that period the amount of autism research increased greatly, so research into the severe part of the spectrum might not have dropped. I wonder how they determined what was severe autism research back in the early ‘90s as it was just autism then.

You said the study was over a decade old I suspect it pre dated the merger of autism and Aspergers.

So they probably cited the diagnosis of autism rather than Aspergers.

However the suicide rate among us aspies is quite high so if you include suicide attempts sucesssful / unsuccessful into self harm I suspect you would see significant numbers anyway (most unsuccessful attempts rarely get officially reported)

I suspect what they are referring to with research is also due to the merger.

When Aspergers became part of autism there was a sudden interest in the disorder and most research went there. Including our UK autism center that engages in a lot of wasteful tick box exercises for aspies, while the most disabled autistic people are ignored and dumped as uninteresting.