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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

#141

Post by RacingTheClock »

Boogie_Man wrote: post #74

If they come out with a list of twenty adjustments they're going to make based on the study (things like but not necessary including: banning certain fire retardents, attempt to reduce break/tire pollution, adjusting the timing of (but not eliminating) the vaccine schedule, banning specific food additives, reducing/modifying specific pesticide use) I will believe this is a legitimate and well intentioned effort from…

I think 1 in 36 kids having autism is similar to how breast cancer diagnosis shot up when we had better imaging ability or when we figured out prostate cancer was actually fairly common in older men but not usually something worth doing anything about. When we merged in aspergers and autism together that obviously makes autism rates higher and as research continues on diagnosing autism it makes sense rates increase from there too? I mean in the past we thought autism was only common in boys!

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

#142

Post by ChrisMarshallNY »

gruez wrote: post #132
ChrisMarshallNY wrote: post #115

Earlier quoted context omitted.

Didn't someone recently mention that "The fundamental weakness of Western civilization is empathy"? Sounds familiar...

That quote was massively taken out of context. His argument was that the west has too much empathy, not that empathy is bad, period. He even specifically prefaced that with saying that empathy is a good thing.

The problem with being on the public stage, is that Every. Single. Word. They. Utter. has the ability to be reframed. With Deepfakes, they can now have words put in their mouths, in a realistic manner.

That's why so many politicians and C-suite execs are "weasely." They learn to choose their words carefully. The Fed Chair can crash the markets, by wincing at the wrong time.

I empathize with him (see what I did, there?), but he's in a position where his utterances can either do great good, or great harm.

Many of these mega-rich folks keep their mouths shut, and that's for a reason.

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

#143

Post by RacingTheClock »

ekianjo wrote: post #92
jsheard wrote: post #33

Earlier quoted context omitted.

> shortly after the abolishment of lobotomy That's an important bit of context whenever RFK Jr. talks about how conditions like Autism and ADHD weren't a thing when he was growing up - his own aunt, who may well have had one of those conditions, was dealt with by giving her a lobotomy and then hiding her away. Those are the supposedly better times he's harkening back to. https://en.wikipedia.org/wiki/Rosemary_Kennedy

Lobotomy was not given to young children even when it was a thing...

In this case lobotomy was put on a non consenting 23 year old. So much better?

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

#144

Post by sethammons »

gruez wrote: post #132
ChrisMarshallNY wrote: post #115

Earlier quoted context omitted.

Didn't someone recently mention that "The fundamental weakness of Western civilization is empathy"? Sounds familiar...

That quote was massively taken out of context. His argument was that the west has too much empathy, not that empathy is bad, period. He even specifically prefaced that with saying that empathy is a good thing.

Context:

Musk: Yeah, [Gad Saad is] awesome, and he talks about, you know, basically suicidal empathy. Like, there's so much empathy that you actually suicide yourself. So, we've got civilizational suicidal empathy going on. And it's like, I believe in empathy, like, I think you should care about other people, but you need to have empathy for, for civilization as a whole, and not commit to a civilizational suicide.

Rogan: Also don't let someone use your empathy against you so they can completely control your state and then do an insanely bad job of managing it and never get removed.

Musk: The fundamental weakness of Western civilization is empathy. The empathy exploit. They're exploiting a bug in Western civilization, which is the empathy response. So, I think, you know, empathy is good, but you need to think it through and not just be programmed like a robot.

https://www.msn.com/en-us/news/technology/yes-musk-said-the-...

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

#145

Post by 47282847 »

sethammons wrote: post #144
gruez wrote: post #132

Earlier quoted context omitted.

That quote was massively taken out of context. His argument was that the west has too much empathy, not that empathy is bad, period. He even specifically prefaced that with saying that empathy is a good thing.

Context: Musk: Yeah, [Gad Saad is] awesome, and he talks about, you know, basically suicidal empathy. Like, there's so much empathy that you actually suicide yourself. So, we've got civilizational suicidal empathy going on. And it's like, I believe in empathy, like, I think you should care about other people, but you need to have empathy for, for civilization as a whole, and not commit to a civilizational suicide. Ro…

To me, “suicidal empathy“ (if that exists) is a lack of empathy (for self) — not “too much of it“. It’s not zero sum.

You could go as far as to say that empathy only occurs in moments where there is no me or other, just an “us“. Which includes me.

His statements and behavior make me question whether he really experiences empathy or whether he lost that too early in his life to consciously remember.

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

#146

Post by refurb »

arcticfox wrote: post #83

gift link to a related NYT Opinion piece by an actual (very liberal) parent living this reality that may surprise some people https://www.nytimes.com/2025/04/25/opinion/autism-rfk-parent... As a very liberal parent of a profoundly autistic child, there has never been article I've related to more. The condescension of fellow liberals and advocates for level 1 autism for us, much of which is present in this thread alre…

Why is a comment like this downvoted? I found value in it since I likely wouldn't have come across this information otherwise.

The comment is simply sharing an article from someone directly affected. What happened to intellectual curiosity? Diversity of opinion? It's comments like this we need more of on HN, not less of.

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

#147

Post by [deleted] »

arcticfox wrote: post #88
perihelions wrote: post #57

Earlier quoted context omitted.

I'll quote Kennedy's dehumanizing comments for context, that people can compare the two styles of rhetoric: - "Kennedy said many autistic children were “fully functional” and “regressed … into autism when they were 2 years old. And these are kids who will never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a to…

He's specifically talking about nonverbal kids like mine. I'm sorry, it's a disability, and I'm terrified what's going to happen to my kid when I'm gone. I don't think RFK Jr's policies will help and I didn't vote for them. But the amount of frustration I have towards comments like yours that ignore our worlds is immense. At least RFK Jr speaks honestly and candidly. The challenges a level 1 autistic person faces are…

[deleted]

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

#149

Post by JeremyNT »

sethammons wrote: post #144
gruez wrote: post #132

Earlier quoted context omitted.

That quote was massively taken out of context. His argument was that the west has too much empathy, not that empathy is bad, period. He even specifically prefaced that with saying that empathy is a good thing.

Context: Musk: Yeah, [Gad Saad is] awesome, and he talks about, you know, basically suicidal empathy. Like, there's so much empathy that you actually suicide yourself. So, we've got civilizational suicidal empathy going on. And it's like, I believe in empathy, like, I think you should care about other people, but you need to have empathy for, for civilization as a whole, and not commit to a civilizational suicide. Ro…

How does this context somehow exonerate him?

It reads like absolute paranoia to me.

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

#150

Post by sethammons »

_nalply wrote: post #102
0x1ceb00da wrote: post #78

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 funct…

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?
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