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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: 0.227s | 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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1. ellen364 ◴[27 Apr 25 11:49 UTC] No.43811250[source]▶
Channels about autism also disproportionally cover people who are willing to talk about their autism. Recently I've been reading The Lost Girls of Autism. Something that stood out in the anonymous accounts is the fear of being "discovered" and the associated anxiety and depression. Since reading that I'm not super comfortable with the idea of incentivising high-functioning people to hide.