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

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221–230 of 377 posts

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

#221

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.

Fixing diseases and abnormalities in humans is empathy and compassion.

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

#222

Earlier quoted context omitted.

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…

> They're exploiting a bug in Western civilization, Who are? Did he say? Sorry for not listening through the whole thing. There's a lot of pointless rambling going, which I guess is something inherent to the format more than it is to him.

[deleted]

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

#223

Earlier quoted context omitted.

"Actually, it's good they're registering every autistic persons in the country in a national database, under a president who is overtly eugenicist [1]." No it's not. At minimum this is a horrible invasion of privacy, that I can't believe anyone on HN would defend. At worst this is straight Nazi shit, preparing the ground for extermination. [1] https://time.com/7002003/donald-trump-disabled-americans-all...

> I can't believe anyone on HN would defend. On this site, you can hold pretty much any opinion you like as long as you coach it in the most neutral-sounding "Modest Proposal"-esqe language you can.

To expand on what you said - you can post some grotesque things here as long as you don't provoke flagging or offending the ~90th percentile into down-voting your comment in the first 24 hours, and language plays a big part in this, such as hiding bigotry behind big words and playing into confirmation bias. Low-level down-voting can be countered if you can get I think this is a side-effect of HNs voting rules, what counts as "adding to the conversation", and the limited window for voting down comments and unlimited time to vote up.

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

#224

Earlier quoted context omitted.

> I can't believe anyone on HN would defend. On this site, you can hold pretty much any opinion you like as long as you coach it in the most neutral-sounding "Modest Proposal"-esqe language you can.

To expand on what you said - you can post some grotesque things here as long as you don't provoke flagging or offending the ~90th percentile into down-voting your comment in the first 24 hours, and language plays a big part in this, such as hiding bigotry behind big words and playing into confirmation bias. Low-level down-voting can be countered if you can get I think this is a side-effect of HNs voting rules, what c…

Very much so, HNers pride themselves in this "enlightened centrist" aesthetic, while giving extremely fringe analysis and opinions on any subject under the sun.

Everything that touches to genetics or education is a sight to behold.

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

#225

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.

Fixing diseases and abnormalities in humans is empathy and compassion.

Are you referring to the Trump government's treatment of trans people?

RFK views autistics as undesirables, so it's absurd to believe that he'll be any nicer to us.

> “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 on a date, many of them will never use a toilet unassisted,”

What makes more sense is that he's collecting our personal information for imprisonment and execution.

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

#226

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.

This is an interesting narrative. I think competition has something to do with it in our modern society. If I work at a company and someone is so competitive that I end up getting fired for whatever reason. I'm not going to all of a sudden care what happens to that person. Because they didn't care what happens to me. So you extrapolate this to the societal level, mix in the different cultural and clan ideological backgrounds of the occupants on the society and you can see how autism is a scapegoat for side effects of competition in many levels of our lives. Then you add the time dimension into the mix and yeah, maybe it looks like autism but maybe it's just, hey were all competing in many different ways and at some point. You stop giving a f*^k.

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

#227

Earlier quoted context omitted.

Fixing diseases and abnormalities in humans is empathy and compassion.

Are you referring to the Trump government's treatment of trans people? RFK views autistics as undesirables, so it's absurd to believe that he'll be any nicer to us. > “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 on a date, many of them will never use a toilet unassisted,” What makes more sense is that he's collecting our…

> RFK views autistics as undesirables

>> “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 on a date, many of them will never use a toilet unassisted,”

This is true of people with severe autism. I know someone whose autism is severe enough she'll probably never be able to live independently. Doesn't everyone view that medical condition--the condition, not the person--as undesirable? Doesn't everyone view being healthy as better than being unhealthy?

I have ADHD. I'd rather not have ADHD. I take a pill every day to control it. My kid has it too. He'll have to take a pill every day for the rest of his life. I'd love to avoid that outcome. Avoiding disease is a good thing!

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

#228
post #146

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.

To start with, someone directly affected by autism is someone experiencing it themselves. Parents, educators, and caregivers have historically been granted primacy in these discussions, largely because so many autistic people cannot effectively advocate for themselves, either at all or in the current systems that exist for it. That doesn't change our obligation to center the experiences of autistic people, who are having the most direct one possible.

Parent- and caregiver-focused approaches are how we've ended up with things like ABA¹ being fairly mainstream, and sympathy for parents pursuing experimental or simply crank treatments to "cure" their children, frequently with extremely harmful results. Support and advocacy groups run by autistic people are absolutely full horrific stories of abuse in this vein.

Which is, I believe, a large part of RFK's interest² in it. I think he wants to make more ad hoc, extreme, and experimental and frankly abusive "treatment" supported for parents of autistic children.

So the comment you're responding to isn't a curious or "diverse opinion", it is basically the standard view of this up until the last 10-15 years or so. Autistic people had to fight very hard to have our own views and experiences taken seriously. RFK's focus here is part of an even-more-recent backlash against that.

¹ Essentially conversation therapy for autism. It can be effective at teaching us how to behave like "normal" people which can be comforting for parents of autistic children. But autistic people overwhelmingly experience it as extremely distressing or worse.

² He has also signaled that he will use it as a justification to ban vaccines. I don't have enough of a read on the guy to reckon which of these is a bigger motivation to him. There's also an understudied but impossible-to-deny correlation between transness and autism. A lot going on here.

https://en.wikipedia.org/wiki/Applied_behavior_analysis#Crit...

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

#229

Earlier quoted context omitted.

> I can't believe anyone on HN would defend. On this site, you can hold pretty much any opinion you like as long as you coach it in the most neutral-sounding "Modest Proposal"-esqe language you can.

To expand on what you said - you can post some grotesque things here as long as you don't provoke flagging or offending the ~90th percentile into down-voting your comment in the first 24 hours, and language plays a big part in this, such as hiding bigotry behind big words and playing into confirmation bias. Low-level down-voting can be countered if you can get I think this is a side-effect of HNs voting rules, what c…

I'm glad to see I'm not alone in recognizing this. I've had literal holocaust denial and neo nazizm show up in comment threads before and I end up the one warned about "maintaining a spirit of curiosity"

I usually only lurk anyway as a physicaly disabled autist but this thread made me have to push thru typing pains.

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

#230

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…

Regardless of any so called good that could supposedly come of this..... Why does the federal government get to seize my medical records and data for this list without my consent??? Are autistic people not full citizens? What about rule of law??? If we can take such drastic measures and shit all over things like hippa and medical ethics....where is the sweeping federal database of obese people .
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