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

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.

activities that would result in "identifying themselves as autists" include: seeking a diagnosis in the first place, getting the help of a mental health professional, frequenting support groups and forums, and wearing a fitbit or smart watch.

It's really not a good thing when people, high functioning or not, are forced to choose between getting the help they need and being targeted by their government.

Why do you consider that a good thing?

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

“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

This is like saying what makes cerebal palsy so dangerous. Why is trying to find out causes so dangerous? The dangers of empiricism in the 21st century.

In the UK, there are regions where 50% of children born in the early 2000s have special needs, and more children than adults are claiming disability benefits. It is going to have a very big impact on the labour market when 20-30% of these cohorts cannot work and, therefore, need to obtain income support from everyone else.

>What is it that makes autism so dangerous?

That the parents of severe cases eventually pass away and unless they figure out to take the kid with them, he is condemned at best to a life in mental health institutions - and usually they make One Flew Upon Cuckoo's Nest look like Teletubbies.

Add to that more and more people are single kids and usually born out of geriatric pregnancy (which also increases the chances of autism somewhat) - aka above 35, so they really are alone.

There are very good state and society interests in preventing autism. Mental disabilities are way worse than physical in today's society. Thankfully not every case is severe. But severe one's do exist.

"Do not commit the sin of empathy"

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 toilet unassisted.”"

- "He also said, “Most cases now are severe. Twenty-five percent of the kids who are diagnosed with autism are nonverbal, non-toilet-trained, and have other stereotypical features.”"

https://www.pbs.org/newshour/politics/fact-checking-robert-f...

we did stand up and we voted the senile fool and his cronies out.

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?

Wanna bet?

it needs to be pointed out that the medical "profesion", especialy anything related to psychology does not let anyone who comes in, and leave, without a diagnosis.....unless it is someone getting a mandatory check for a security clearance, in which case it's sunshine and happyness. The best anyone else can hope for is ....."inconclusive", nobody gets an all clear, except money and power, for whom, a full psychotic break will be spun into something virtuously overcome and meritable. History, might not repeat, but it sure as fuck rhymes. The two year old child of an American citizen was deported last week, so this is already gone completly off the rails.

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

Already the US can serve as a good example when discussing the need for unbreakable cryptography and e2e systems. The current decline nicely illustrates how quickly you can go from "The police have legitimate needs to break encryption to find heinous criminals" to something far more dystopian.

It was notable that he started with "these people will never pay taxes" when announcing this.

I agree generally but I hope we make as much real anonymous health data available for research.

Google is certified and runs the biggest medical database with (I believe without googling this) the biggest hospital operator in the USA.

I have a condition which is rare enough that it doesn't get enough funding and data is missing

What makes you think this isn't it? I know that the primary reason for his fixation with autism is to attack vaccines. But have you listened to him talk about autistic people? It's pretty clear that he considers autistic individuals as unproductive (the tax remark) burden who destroys families. It's very clear that he considers them as subhuman. Sounds very close to 'life unworthy of life' argument made by the Nazis. While at it, the Nazis also had a register of disabled people and used the 'economic burden' argument to sell the idea of mass murder. Honestly, I'm struggling to find a difference here. To understand the full scale of the danger, this is how the Holocaust originated - with the murder of a single child in 1939 under their involuntary euthanasia program for disabled children. It gradually made the system comfortable with mass murder as the scope of the program expanded to teens, then adults and to whole races in the end. That's exactly what I see now as well - people tolerating more and more transgressions that would have been unthinkable just a year ago!

People sometimes tend to shutdown comparison of any situation with Nazism using the hideous Godwin's law. Apparently it's a sacrilege towards the Holocaust victims to compare their plight with any emerging threats. But there is no guarantee that the horrors of the past won't repeat in the future. In fact, that is one of the reasons we learn history - to recognize the repeating patterns of similar mistakes. And I think the situation is very perilous already. Perhaps I'm paranoid. But remember that people are arbitrarily getting deported to some foreign detention camp and judges are being arrested within 3 months of this regime coming into power. How long before we find ourselves haunted by the dreadful events of the past?

> 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

This is a huge factor, in ASD and in mental/behavioral issues in general. Not saying it's a bad thing but it makes comparison over time to be apples to oranges.

Also... the picture of left-handed people would fit in here.

https://slowrevealgraphs.com/2021/11/08/rate-of-left-handedn...

The very much same applies here I think.

> The criteria for diagnosing ASD today are vastly different

Not that much.

The difference between now and 50 years ago is that a) we don't just throw them into asylums, b) we actually have accessibility of getting diagnosed, c) employment opportunities suitable for many people with mental disabilities (such as factory line assembly) have gone down the drain.

Yes, but is that a feature or a bug? Certainly those who define these things understand the need and value of historic tracking. And yet the target keeps moving.

If expanding the definition is the feature required action should be taken to mitigate the bug. True?

What's the link between ASD and lobotomies?

Calling it a "guess" seems very generous at this point, saying it is a "lie" is more accurate I think.

I'd guess it's ultra-processed foods.

The state has made their intentions crystal clear…

> transvestites

The focus seems to lie on transgender people, not cross dressers.

Don't forget the obsession with IQ, even if it died down recently.

Even if you are a current supporter of this administration this all should give you a moment of pause really. Even if you think the current administration isn’t about this, and it’s fear mongering by the media to you, what if the next administration goes a step further than you like, and this is where the door was set open?

There is a reason the constitution was set up the way it was in the light of not having a King and not being unfairly treated.

Nit, nobody actually cares all that much about transvestites. Vest like from vestments meaning clothes. They're cross-dressers. Historically transsexual or transgender (depends on the country which one is the more prominent term) people have been called transvestites but it was a mischaracterization. Someone born with XX chromosomes but who lives his life full-time as a man is very different from a woman who likes to dress up like a man for sexual or other pleasure.