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

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271–280 of 377 posts

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

#271
post #2

https://archive.is/TEAAk

I get a cloudflare puzzle when I try to visit this link :(

As a data point, the archive.is link is working for me.

I'm usig Orion (browser) on macOS (Apple Silicon) presently if that helps. With UBlock Origin installed in it.

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

#272
post #254

Earlier quoted context omitted.

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

He’s being incredibly clear that when he talks about people that have trouble participating in society, he is talking about the 26% of people with profound autism. Online autism conspiracy theory channels turn this into some kind of eugenics purge.

He's not being "incredibly clear" because he speaks about autistic people with one broad brush.

And in calling this "a conspiracy theory" and "some kind of eugenics purge", you seem to be intentionally downplaying the very real and very legitimate worries of autistic people, a group who has historically been subjected to eugenics purges in the past, which started using the language and rationale Kennedy espouses.

If Kennedy wants to be taken seriously and with good faith, he should put autistic people and experts in charge of this effort. That he doesn't speaks volumes about his true intentions.

Sorry if that sounds like a conspiracy theory to you, but autistic people like myself see the obvious parallel here and we aren't going to just be quiet and allow it to happen again.

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

#273
post #254

Earlier quoted context omitted.

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

He’s being incredibly clear that when he talks about people that have trouble participating in society, he is talking about the 26% of people with profound autism. Online autism conspiracy theory channels turn this into some kind of eugenics purge.

> He’s being incredibly clear that when he talks about people that have trouble participating in society

Is that supposed to make it better? This distinction between autistic individuals who are productive and those who have trouble participating in society goes back to Nazi Germany where they sent the latter group to "reform camps" and "hospitals" to be murdered and eradicated. That's where the distinction of "Asperger syndrome" comes from.

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

#274
post #255

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…

I didn’t realise until other people replied to you that you weren’t using dehumanising sarcastically. There is nothing dehumanising about acknowledging the existence of the profoundly autistic.

He's not "acknowledging their existence" though, he listed a series of very typically human activities and experiences, and then said autistic people don't get to experience them due to their innate differences.

First of all that is false, because even profoundly autistic people do the things he said they don't do.

Secondly, it's dehumanizing because the reason he lied (yes what he said was a lie) was so that the listener would feel sorry for autistic people, and would thereby support 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.

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

#275
post #260

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…

What were the symptoms your 3 yr old were exhibiting to be asked to screen them? Was the teacher right to say something or are they handing out these diagnoses like candy?

He was a little speech delayed, has somewhat below age level fine motor function, can sight read a lot of words, and has some odd behaviors, like taking to his hand pretending its Toodles from Mickey Mouse Clubhouse. The county said he was borderline. There is some gaming of the system going on for sure. They said they were ready to diagnose him with something and give him an IEP if he were going to public school where he could get extra services, but since we’re planning to send him to private K-12 they recommended against it.

I’ll be honest, my first thought was that it was white women (everyone in this story besides me) overreacting. In our circle of friends, several of the kids are diagnosed with something on the spectrum. By contrast I don’t know a single person from my immigrant group whose child has a diagnosis. So I was skeptical. But ultimately, I figured that the teachers see dozens of these kids every year and I trust their judgment.

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

#276
post #260

Earlier quoted context omitted.

What were the symptoms your 3 yr old were exhibiting to be asked to screen them? Was the teacher right to say something or are they handing out these diagnoses like candy?

He was a little speech delayed, has somewhat below age level fine motor function, can sight read a lot of words, and has some odd behaviors, like taking to his hand pretending its Toodles from Mickey Mouse Clubhouse. The county said he was borderline. There is some gaming of the system going on for sure. They said they were ready to diagnose him with something and give him an IEP if he were going to public school whe…

Yeah I have observed the same re: lack of immigrant mental health access/diagnosis, but it seems to be changing in subsequent generations that are more privy to mental health disorders in general. Why not help a child get accommodations they need to thrive in school, there is no shame in that in my opinion. It narrows/evens the playing field for neurodivergent folks who need a little more help to be their best selves in school.

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

#277

Earlier quoted context omitted.

The problem is not fixing diseases. The problem is what is defined as a disease or abnormality. The problem is people who are clearly choosing abnormalities based on politics, power grabs, and anti-science rhetoric.

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, but we now understand that this limit was arbitrary and wrong, because autism is a broader spectrum of people with a wide range of possible characteristics.

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. The proof being that outside of a minority of extreme cases, autistic people does not have issues communicating or socializing with other autistic people.

Trying to categorize people as "normal" and "abnormal" and then pretending to "fix" the abnormal ones is dangerous and drifts towards eugenism, because there is not a single definition of normal, and there is probably not a single person on earth that is "normal".

If 97% of the population was autistic, then autistic people would not have any issues. The remaining 3% of what is currently considered neurotypical would be the ones having difficulties socializing, communicating and experiencing severe anxieties and psychological problems due to it.

This is why the solution is not to "fix" autism, but to help them find an environment where they can strive, be understood and live comfortably.

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

#278
post #254

Earlier quoted context omitted.

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

He’s being incredibly clear that when he talks about people that have trouble participating in society, he is talking about the 26% of people with profound autism. Online autism conspiracy theory channels turn this into some kind of eugenics purge.

> Online autism conspiracy theory channels turn this into some kind of eugenics purge.

No, people in leadership positions have a duty to lead - justifying themselves and attempting to get buy in from everyone. Especially so on sensitive topics that we're societally squeamish about due to some very real historic horrors.

I know the memetic field is a bit hazy from the sensationalist media pushing divisive whole-cloth nonsense like Joe Biden is going to make you eat bugs etc, but there is a huge difference when that schizophrenia is actively encouraged from the top.

So this idea that we're just supposed to trust the Trump administration, when many of their actions have already been completely unhinged and senseless (eg huge tariff taxes), when Trump's last time at the helm was completely divisive and destructive, and when he's picked the most unhinged type of charlatans for his cabinet this time around? Sorry, trust needs to be earned - especially the amount required for pulling on rightfully sensitive threads - and they're not even doing the basics of attempting to.

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

#279

Earlier quoted context omitted.

> Your comparison makes no sense. Bangladeshi Americans, as a group, are normal and healthy. They don't suffer from a medical condition that could be cured. I was trying to give you a sense of why I interpret his comments as a threat. He's described all of us as if we're a burden when I've been supporting myself for decades. Some autistics would want a cure, but others feel that their perspective is equally as valid…

And I'm saying you shouldn't compare people of different ethnicities to people with medical conditions. I'm normal where I'm from. My skin color is an adaptation to the tropical climate I'm from. It's not a medical condition that's maladaptive to normal functioning, or something that ideally we could cure. Your use of the term "eugenics" is nonsensically broad. Society should seek to cure diseases and maladaptive med…

Your problem is that you fail to understand that autism isn't a disease, it's a neurodivergence, their brains are just wired slightly differently. Many autists live their whole lives without even suspecting of their conditions, and most of those who are aware of it live absolutely normal lives. The only way we could potentially "cure" autism is if we somehow altered peoples' brains while in the womb, if that's not eugenics I don't know what is.

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

#280

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…

About a fourth of kids diagnosed with autism have IQ at 75 or below.

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