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

(www.washingtonpost.com)
254 points perihelions | 2 comments | 27 Apr 25 09:23 UTC | HN request time: 0s | 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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monero-xmr ◴[27 Apr 25 11:33 UTC] No.43811161[source]▶
There isn’t a definitive test for autism. High functioning autists would have been considered quirky or odd in the past. We label everything now though
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1. dns_snek ◴[27 Apr 25 12:06 UTC] No.43811338[source]▶
> We label everything now though

Are "quirky" and "odd" not labels? How about "weirdo" and "creep", are those not labels?

These romanticized ideas of what autism is (or used to be) hit a brick wall when you consider that 2/3 of people with autism have contemplated suicide and 1/3 of people with autism have attempted it. Most of it could probably be attributed to social rejection, exclusion, and isolation perpetuated by people who don't suffer from these disorders.

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2. goku12 ◴[28 Apr 25 16:59 UTC] No.43823551[source]▶
The amount of condescension in this thread is astounding. People who have zero experience with autism have decided to split the autistic community into 'high-functioning' and 'low-functioning' groups and declare that the former is perfectly fine. I don't even understand what their problem is.