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

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

#171

Post by ModernMech »

sethammons wrote: post #150
_nalply wrote: post #102

Earlier quoted context omitted.

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.

Can you clarify? How should one talk about and differentiate between the frequencies?

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.

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

#172

Post by goku12 »

0x1ceb00da wrote: post #152
npteljes wrote: post #95

Earlier quoted context omitted.

Why do you consider that a good thing?

[flagged]

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.

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

#173

Post by goku12 »

michaelt wrote: post #139
npteljes wrote: post #95

Earlier quoted context omitted.

Why do you consider that a good thing?

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.

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.

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

#174

Post by throw0101b »

atombender wrote: post #166
throw0101b wrote: post #117

Earlier quoted context omitted.

> ICE is gearing up to be the Gestapo. It should be noted that the Nazis took a lot of US policies from 1920/30s and ran with them just a little bit further. The Nazis were famous for eugenics, but it was quite big in the US as well, see for example: * https://www.npr.org/sections/health-shots/2016/03/07/4694780... * https://en.wikipedia.org/wiki/Buck_v._Bell Their initial treatment/segregation of the Jews wasn't muc…

Sorry, why should it be noted? What is the relevance of your comment other than whataboutism?

> Sorry, why should it be noted? What is the relevance of your comment other than whataboutism?

It is worth noting because nowadays the Nazis are treated as evil incarnate, and the Allied side of WW2 the side of justice, but the history of the ideas behind the Nazis does not lie (entirely) with-in Germany. There is darkness in every society (including the US) and certain tendencies, and worth reminding people that these things can take hold anywhere, and not just "over there".

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

#175

Post by throw16180339 »

47282847 wrote: post #55

It’s interesting to muse about the larger picture here. What is it that makes autism so dangerous? To me it looks like part of an almost spiritual war against empathy/compassion by traumatized individuals trying to fight their own Jungian Shadow.

RFK has been quite clear that autistic people are undesirables. They're collecting our personal information so that we can be imprisoned or killed.

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

#176

Post by jdrek1 »

autoexec wrote: post #118
jdrek1 wrote: post #96

Earlier quoted context omitted.

> and wearing a fitbit or smart watch. Since when is wearing smart watches only for autists?

It's one of the many private data sources they were planning to use to track and collect data on autistic people for their database. https://people.com/rfk-jr-to-launch-autism-registry-using-pr... Autistic or not, giving that kind of health information to private for-profit companies who collect that data to use it against you or sell to third parties was never a good idea even before the government wanted to take it…

Ah, I didn't know that. To me your sentence read like autists out themselves by wearing a smartwatch.

Fully agree with you on that, the less data they have, the better.

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

#177

Post by ohgr »

A4ET8a8uTh0_v2 wrote: post #137
ohgr wrote: post #30

Earlier quoted context omitted.

Indeed. No data is safe or secure in such environments. This has become an issue big enough that the US company I work for is actually removing data from US cloud providers to make it harder to get at. The European divisions have started data sovereignty projects because it's now a principal risk. I'm out of the cloud as well.

Ha. My company was advising having a burner phone when traveling to US in a company-wide meeting. There has been something of a shift.

Yeah similar. My company is US and have banned all travel to US. Said we can do stuff over Teams instead.

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

#178

Post by austin-cheney »

thrance wrote: post #136
austin-cheney wrote: post #47

Earlier quoted context omitted.

What would you suggest Americans actually do? They voted this in knowing this would happen. It’s one thing to shout into a void about some vague disagreement, but it’s entirely different to actually take some form of real action. What should that action comprise?

This country needs to crumble on itself, 30% of Americans are still behind Trump, whatever he does. This will not be fixed easily.

I really believe it’s a messaging problem and a money problem. There is money guiding media to rally around a message/figure and it’s rewarded handsomely in return. That’s the problem to fix.

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

#179

Post by gruez »

47282847 wrote: post #170
gruez wrote: post #160

Earlier quoted context omitted.

>To me, “suicidal empathy“ (if that exists) is a lack of empathy (for self) — not “too much of it“. It’s not zero sum. "Empathy" in the form of thoughts and prayers might not be zero sum, but that's probably not the "empathy" that Musk is talking about. He's probably about government spending on refugees or foreign aid, which is zero sum.

Like l said, I doubt he experientially knows what he’s talking about. Or he means what he says and expresses the desire to paint empathy in a bad light and by that continue to dehumanize the other to justify violence. Interesting that you talk about “thoughts and prayers“. I am talking about feelings, the foundation of empathy.

>Like l said, I doubt he experientially knows what he’s talking about.

What does that even mean? You can't defund USAID without yourself first going on a trip to Africa to dig a well?

>Or he means what he says and expresses the desire to paint empathy in a bad light and by that continue to dehumanize the other to justify violence.

How did you go from "so much empathy that you actually suicide yourself" to "dehumanize the other to justify violence"? Presumably he's talking about refugees and foreign countries, but there's a pretty wide gulf between putting the interests of your own polity ahead of others, and "dehumanize the other to justify violence".

>Interesting that you talk about “thoughts and prayers“. I am talking about feelings, the foundation of empathy.

I doubt Musk is upset all the people tweeting prayer emojis whenever a natural disaster hits a foreign country, when he's talking about "we've got civilizational suicidal empathy going on".

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

#180

Post by SauciestGNU »

gruez wrote: post #161
JeremyNT wrote: post #149

Earlier quoted context omitted.

How does this context somehow exonerate him? It reads like absolute paranoia to me.

>How does this context somehow exonerate him? You might not agree with his statement even with the full context, but at the very least it's a very different statement than the initial quote of "The fundamental weakness of Western civilization is empathy".

With the larger context of the quote it still seems like a distinction without a difference.
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