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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

#301

Post by boroboro4 »

rayiner wrote: post #221
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.

Fixing diseases and abnormalities in humans is empathy and compassion.

Some people considered being a jew abnormality and found their way to fix it.

We're moving same direction, mostly by people wishing for a strong arm, and being consumed by hate. And it's definitely not empathy and compassion in play here.

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

#302

Post by nailer »

ModernMech wrote: post #294
nailer wrote: post #286

Earlier quoted context omitted.

Most profoundly autistic people don’t go the bathroom unassisted, or pay their own taxes. That’s true. > Kennedy to do whatever he wants to them to restore their humanity, whether that be a registry, concentration camps (or as he calls them, "wellness farms") or whatever else he has planned. Wild conspiracy theories help nobody, and also harm autistic people.

> Most profoundly autistic people don’t go the bathroom unassisted, or pay their own taxes. That’s true. As long as you define "ability to go to bathroom and pay taxes" as profound autism, that's true. But as I said, autism is a spectrum -- there is no such thing as "profoundly autistic". That's not a thing. You're again trying to make a dichotomy, and this is a misconception both you and Kennedy share. > Wild conspi…

> As long as you define "ability to go to bathroom and pay taxes" as profound autism, that's true

Yes. That's literally the meaning of profound - has trouble with common functioning. Your position seems to be that a group - profound autistic people - that is defined by it's functional ability is being mischaracterised as having low functional ability. Mine is that that is literally what profoundly autistic' means.

> No one else is going to advocate or look out for autistic people, so we have to do it ourselves, and if that means people think we are overreacting so be it.

Likewise, which is why I support efforts to investigate the causes of something that is currently very ill defined. I do have resevations about RFK, it reminds me of working at Google where people find research to support their pre-drawn conclusions. But conspiracy theories about death camps are not one of my concerns.

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

#303

Post by TeaBrain »

Seb-C wrote: post #277
rayiner wrote: post #251

Earlier quoted context omitted.

Science and medicine is what has defined autism as a disease or abnormality. Science and medicine are telling us that the rates of these diseases are growing dramatically, for decades now. RFK isn’t the one who made autism concern happen. My three year old’s teacher asked us to get him tested with the county for autism. It’s a very common thing parents are dealing with these days. I’d argue that what you’re saying is…

It is well understood already that the number of autistic people is not actually increasing. What is increasing is our understanding of it and the number of diagnostics. The fact that high functioning people like Asperger got merged with it and changed to a spectrum is precisely science at work, achieving to improve our understanding of the phenomenon. We previously believed that only the extreme cases were autistic,…

>It is well understood already that the number of autistic people is not actually increasing. What is increasing is our understanding of it and the number of diagnostics.

I see this idea thrown around whenever this topic is brought up, but this is just a contemporary opinion of certain researchers and science commentators. It is both unprovable and unfalsifiable.

>Autism is not a disease, it's a neurodivergence, and it is very important to understand that autistic people are not broken, but simply function differently.

A teacher I had in high school has an adult child with severe autism who is still living with her, because he can't take care of himself. He's not simply functioning differently, nor is anyone else that has the condition so severely that they can't perform any job.

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

#304

Post by rayiner »

boroboro4 wrote: post #301
rayiner wrote: post #221

Earlier quoted context omitted.

Fixing diseases and abnormalities in humans is empathy and compassion.

Some people considered being a jew abnormality and found their way to fix it. We're moving same direction, mostly by people wishing for a strong arm, and being consumed by hate. And it's definitely not empathy and compassion in play here.

> Some people considered being a jew abnormality and found their way to fix it.

They were wrong. Does that mean that human developmental abnormalities don't exist and we shouldn't be looking for ways to prevent them? Of course not.

I can't believe you're making me defend RFK, but characterizing this as being motivated by "hate" is completely absurd. RFK is a kook, but he's a kook motivated by compassion and empathy. His entire career has been driven by compassion for people affected by environmental poisons. And the people in his camp are crunchy granola parents who can't analyze statistical data, who are grasping at straws trying to find out why their kid has a developmental abnormality that science doesn't have a ready explanation for.

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

#305

Post by mrguyorama »

thrance wrote: post #126
timoth3y wrote: post #91

Earlier quoted context omitted.

“I told you once that I was searching for the nature of evil. I think I’ve come close to defining it: a lack of empathy. It’s the one characteristic that connects all the defendants. A genuine incapacity to feel with their fellow man. Evil, I think, is the absence of empathy.” ― G. M. Gilbert, American psychologist who worked on the Nuremberg trials

It's crazy we got all those lessons figured out, clear as can be and right in the history books, that every kid is supposed to learn. And yet, here we are, back to square one.

Just because we sit them in front of textbooks and lectures for 8 hours a day for 12 years (plenty of kids drop out of highschool or take fairly nonstandard "get to work" programs that de-emphasize education.) doesn't mean they learn anything.

Plenty of kids sat next to me in precalc learning how to calculate mortgage rates and then complain that school doesn't teach useful skills like how to calculate a mortgage. At the end of the day, learning cannot be forced. You can put all the info in front of the person you want, they can just ignore it.

This is especially true after Bush Jr. made it impossible to hold kids back, which was the primary way we worked around a stubborn kid.

We are roughly one generation after No Child Left Behind, and a lot of kids have been educationally left behind. IMO this is not coincidence. Good teachers knew right away the negative effects that program caused.

Obama reformed NCLB a bit, but did not fix the part that incentivizes schools to prefer just pushing kids forward if they are struggling.

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

#306

Post by mrguyorama »

cruzcampo wrote: post #108
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.

Autists are just an easy group to target that can't fight back too hard. It's just the next step on the escalation ladder. They'll come for all of us eventually

My prediction will be that ADHD people are next. Only 2% of the population and the social conservative supporters of RFK Jr have always hated giving kids stimulants despite the clear evidence supporting its use. There is STILL an ideology among conservatives that the current crop of people being diagnosed as ADHD is "wrong" and that people "with ADHD" are just junkies abusing stimulants or otherwise "overprescribed", despite clear and obvious evidence that people diagnosed with ADHD struggle to get their medicine for utterly stupid reasons and that we objectively do not have the capacity to evaluate everyone who needs it.

They will claim that ADHD people are a drain on society and are unproductive and are just being lazy.

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

#307

Post by overfeed »

threatofrain wrote: post #281
overfeed wrote: post #220

Earlier quoted context omitted.

How well would your IQ score reflect your actual intelligence if you were to take an IQ test in a language you have trouble understanding and expressing yourself with?

It's well agreed that multiple factors contribute to IQ score. What I'm trying to convey is how much burden is predicted by the autism diagnosis.

You're yet to establish the link between IQ score and " burden.

That said, valuing people by their economic output is sick to me, and is a page from the Eugenicists playbook. How much of a "burden" are injured veterans, those who suffered horrific work-place accidents, or those with mental health challenges due to burn out?

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

#308

Post by mrguyorama »

monero-xmr wrote: post #99
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…

There isn’t a definitive test for autism. High functioning autists would have been considered quirky or odd in the past. We label everything now though

We also just used to chain the "weird" family members in the attic and pretend they didn't exist.

For a while, the popular treatment was mulching their brain matter through their eyeball. This was done to a lady kennedy for being too weird. The doctor who suggested we scramble people's brains if they had certain diseases that were hard to treat in other ways got a Nobel Prize.

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

#309

Post by sureglymop »

TeaBrain wrote: post #303
Seb-C wrote: post #277

Earlier quoted context omitted.

It is well understood already that the number of autistic people is not actually increasing. What is increasing is our understanding of it and the number of diagnostics. The fact that high functioning people like Asperger got merged with it and changed to a spectrum is precisely science at work, achieving to improve our understanding of the phenomenon. We previously believed that only the extreme cases were autistic,…

>It is well understood already that the number of autistic people is not actually increasing. What is increasing is our understanding of it and the number of diagnostics. I see this idea thrown around whenever this topic is brought up, but this is just a contemporary opinion of certain researchers and science commentators. It is both unprovable and unfalsifiable. >Autism is not a disease, it's a neurodivergence, and…

Please read through this page shared here on HN a few days ago: https://news.ycombinator.com/item?id=43813441

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

#310

Post by nailer »

ModernMech wrote: post #297
nailer wrote: post #288

Earlier quoted context omitted.

[flagged]

If you are going to 1) propose to make a list of people with autism 2) propose to send them to a concentration camp where where they will be treated Then you had better damn well be prepared to answer specifically how what you're doing is different from what the Nazis did. If you're not prepared to deal seriously and substantively with that very relevent historical precedent , you have no business proposing the regis…

> propose to send them to a concentration camp

Nobody is doing that.

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