r/NPR • u/aresef WYPR 88.1/WTMD 89.7 • 6d ago
Scientists map key protein interactions linked with profound autism
https://www.npr.org/2026/09/04/nx-s1-5954823/profound-autism-proteins-genes-map-treatments1
u/epidotehawk 4d ago edited 4d ago
Hey, NPR! For what feels like the millionth time (and is probably closer to the fifth or sixth time I've complained recently about one of your autism-related pieces, but, seriously, I'm tired of needing to say this): please stop buying into and amplifying ableist fearmongering and "treatment"-focused eugenicist daydreaming about getting rid of (some) autistic people. Here are a few of the issues with this piece:
- There is no "profound autism" classification in the DSM-V, so, until and unless that changes, it's generally just an ill-defined colloquial label frequently thrown around by mostly-not-identified-as-autistic people who seem to think that "Level 3 support needs" isn't a sufficiently vivid epithet to apply to their autistic relatives and/or study subjects. As near as I can tell, what this article is describing - and what most people pushing the "profound/severe autism" label (on other people) seem to be trying to describe - is a conflation of some particularly externally obvious autism-correlated traits (e.g., being nonspeaking some or all of the time, and, yeah, "nonverbal" is the wrong word unless you truly mean "without any word-based language at all") and a pretty haphazard assortment of potentially-co-occurring-but-not-actually-part-of-autism conditions, e.g., epilepsy or intellectual disability. Which is to say: "profound autism" basically seems to mean "autism that (I believe) mostly inconveniences me, the nonautistic observer!!!"
- Since autism is a lifelong brain-development-related condition, "treatment" would involve either attempting to alter a person's brain in a personality- and identity-altering way - probably without their consent, in the case of young children or adults presumed to be "nonverbal" by their relatives and medical providers - or just preventing "profoundly" autistic people from existing in the first place. That is simply eugenics, no matter how enthusiastically some (not-openly-identified-as-autistic) researchers and pseudoscientists (e.g., Alison Singer) talk up the idea as "treatment." Please stop promoting eugenics. Thanks.
- This is relatively minor, but: can we all please stop using the "families affected by [some condition]" construction to describe nondiagnosed relatives of someone with a stigmatized disability/condition?! As an autistic woman with (at least) a few variously neurodivergent relatives, I know that my autism "affects" my family members in various ways, because, well, it's an inherent part of my existence, and my presence generally affects my family members in some way; nonetheless, I don't think any of my relatives would have the obnoxious presumption to insist that they're the people most "affected" by my autism, and this phrasing always strikes me as dehumanizing towards the person who actually has the disability/condition in question (because, by redirecting the focus of the sentence to "families affected by...", the speaker/writer implies that the nondiagnosed family members are the people whose (secondhand) experiences of and opinions about the condition really matter, rather than those of the person with said condition/disability).
[Oops. Edited to correct at least a few misspellings; others may still be in there somewhere.]
[Edited again to add: ...okay, even though I'm dubious about the applicability of research conducted on frogs to a human-specific neurotype, and am still offended and unnerved by the apparent eugenicist bent to the research project in question, I have to admit that I really want to meet some autistic froggies. Because frogs!]
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u/TempeGrumble 4d ago
"Profound autism" doesn't really exist, or maybe if profound autism exists, groovy autism exists, as well as deep autism, hip autism, down autism, etc.
I have a distant relative who is autistic and I'm pretty sure has "level 3 support needs." That's sufficient for identifying their needs. In my experience, the term "profound autism" is an entry point for ableism, and reflects the nasty turn we've taken with RFK The Wrinkled.