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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: 0.419s | 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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_nalply ◴[27 Apr 25 11:34 UTC] No.43811169[source]▶
Autism is seen as a large and wide spectrum of many different symptoms all called "autism". Using terms like "high functioning autism" is probably not a helpful way to talk about some color on the spectrum, however.

Source: I am the parent of a child with autism.

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1. sethammons ◴[27 Apr 25 12:36 UTC] No.43811493[source]▶
Can you clarify? How should one talk about and differentiate between the frequencies?
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2. ModernMech ◴[27 Apr 25 14:26 UTC] No.43812174[source]▶
Because it creates a binary when a) it's a spectrum and b) high/low functioning dichotomy is not a constant. Every day needs can be different. Sometimes people are low functioning during child hood and become more functioning into adulthood. Sometimes high functioning autistic people become low functioning later in life. Some people can function very well when they had adequate support but the can't function at all when support levels fall below a threshold.

Reducing the conversation to high/low functioning also limits people's understanding and compassion of autistic people. The sibling commenter to you said they believe high functioning autistic people don't deserve to have a say over matters concerning autistic people, which is incredibly troubling because that just becomes and avenue for silencing autistic people; if having the ability to speak up for yourself means your opinion isn't valid, then that gives license to use and abuse a population, as autistic people often are.