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

(www.washingtonpost.com)
254 points perihelions | 4 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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npteljes ◴[27 Apr 25 11:30 UTC] No.43811139[source]▶
Why do you consider that a good thing?
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1. michaelt ◴[27 Apr 25 12:14 UTC] No.43811387[source]▶
If the public face of autism is someone who needs no support or accommodations and is in fact very successful - people will understandably be confused when someone with the same diagnosis needs substantial support.
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2. goku12 ◴[27 Apr 25 14:41 UTC] No.43812292[source]▶
I assume that you don't have direct experience with autism? Success is a very misleading criterion. Even the very successful autistic people often suffer from significant distress. Level 1 autism (the most independent one), is also listed as requiring help. They too need accommodations - but it might be different from what you imagine. And their life situation can change drastically and dramatically at any stage.
3. npteljes ◴[27 Apr 25 16:07 UTC] No.43812894[source]▶
In my opinion, people need to learn - and in many things, already know - that things have scale. For example, with "pain": a bruise, cavities in teeth, kidney stones, migraines all hurt, but the level of effect on someone's life is vastly different.

Also, people have no problem minimizing the things as well, where pain again is a good example. In many situations, if it cannot be seen, secondary parties easily disregard it.

So, in conclusion, this confusion with the autism levels should not be a problem.

4. ◴[28 Apr 25 00:18 UTC] No.43816321[source]▶