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U.S. autism data project sparks uproar over ethics, privacy and intent

(www.washingtonpost.com)
254 points perihelions | 1 comments | 27 Apr 25 09:23 UTC | HN request time: 0.211s | source
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0x1ceb00da ◴[27 Apr 25 11:12 UTC] No.43811069[source]▶
One thing this will do is disincentivize high functioning autists from identifying themselves as autists, which is a very good thing IMO. Just look at this channel https://www.youtube.com/@NationalAutisticSoc/videos. There is a lot of survivor-ship bias on this channel towards high functioning autists who can talk in front of a camera.

Just to give an idea to those not familiar with the difference between high functioning and low functioning autism, high functioning autists face problems like not being able to communicate properly some of the time, and low functioning autists face problems like not even being able to tell their caretaker which part of their body is in pain, or which kid in the group punched them.

Edit: The National Autistic Society is UK based but the situation is not that different in other countries.

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npteljes ◴[27 Apr 25 11:30 UTC] No.43811139[source]▶
Why do you consider that a good thing?
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0x1ceb00da[dead post] ◴[27 Apr 25 12:45 UTC] No.43811537[source]▶
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1. goku12 ◴[27 Apr 25 14:34 UTC] No.43812234[source]▶
Low functioning peers can't participate and high functioning peers shouldn't participate. So all discussions about autism should include only non-autistic people? Weird logic doesn't compute!

But what if low functioning and high functioning peers share many symptoms, but at different intensities? Won't that make the 'high functioning' peers more capable of understanding and thus speaking for their low functioning peers? In fact, there is a specific term for this - 'the double empathy problem'. Perhaps you should try a less 'ablist' approach to autism.