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

“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

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

Autists (and neurodivergent people in general) tend to think more freely and follow the crowd less than average.

I’d say they’re dangerous in the same way as librarians are dangerous.

You’re really wondering why the administration that’s rejected habeas corpus, a right which pre-dates the Magna Carta in our system of law, is creating lists of undesirables?

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

an interesting book related to this discussion is "Speed of Dark" by Elisabeth Moon. It tells the story of an autistic person and their struggles while faced with the possibility of a "cure"

>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"

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.

This will unpopular, but I would recommend that anyone who can manage it to avoid any sort of formal psychological diagnosis. Unless you strictly need it for medication, it is always something which could potentially drag you down. Anyone can use the DSM (alongside an actual doctor) to get something of an "informal diagnosis" which will help them understand themselves better and to work with a doctor to form coping strategies. The formal diagnosis could potentially be used against you in the future, whether it's related to autism or not. For some people as well, the formal diagnosis does not seem to help and instead feels like a modern form of astrology; it becomes part of their internal view of themselves, and they trap themselves within the boundaries of their diagnosis.

Channels about autism also disproportionally cover people who are willing to talk about their autism. Recently I've been reading The Lost Girls of Autism. Something that stood out in the anonymous accounts is the fear of being "discovered" and the associated anxiety and depression. Since reading that I'm not super comfortable with the idea of incentivising high-functioning people to hide.

Why do you consider that a good thing?

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.

The high functioning folk are supposedly >6x more at risk of suicidal thoughts... and they're the folks society gets something back from.

I'm all for shaking our heads at young high functioning people flaunting it, but nobody gets the labels by having a good time. It's very rarely beneficial to disclose, even if disclosure is a choice.

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

"high" or "low" functioning is not a constant. I'm autistic and I've been low functioning and high functioning. I can hold a job and had a wife at one point. But sometimes circumstances in my life change my ability to function. Sometimes I will go periods where I can't speak, and this caused me to almost lose my job... but for the fact they knew I was autistic and had compassion for me.

I understand that sometimes people want high needs autistic people to be the only ones who are visible, because it perpetuates the (false) narratives people have about autistic people -- that we can't function in society, we are essentially children, we need to be "cured" to "save the children", but people need to realize this is a) a spectrum and b) your place within the spectrum is always in flux. Low functioning autistic people can become more high functioning with support, and high functioning autistic people who are abused can become low functioning very quickly.

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

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

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.

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?

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

> 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?

I feel for you, because I am not sure how I would fare in that circumstance. That said, the opinion piece is in itself a frustrating.

<< Autism has become an identity, a different way of thinking and existing.

I think, this sentence, more than anything else in that article aggravates me the most and I am not entirely certain why. It is not some sort of rhetorical question. I simply struggle to understand the obsession US denizens have with identity. Everyone is 2% cherokee indian, 2/5 italian and maybe a little dutch on non-pagan holidays. And this does not spare the parents. They are X parents. Puppy parents. Teenager parents. Autist parents. All in an attempt to establish some sort of identity that can be displayed to the society at large.

<< Children with autism have a right to an appropriate education, to accommodations, changes in the classroom to help them succeed; we have sensory-friendly days at the zoo.

Sure, but at the expense of the non-autistic kids? What does that statement actually mean?

<< I don’t care if my child ever pays taxes

In case there is any kind of doubt, the society does. If the registry is not intended as an intentionally bad thing(tm) by RFK jr himself, you can rest assured it is absolutely seen as a way to ensure that more taxpayers exist ( and this is the charitable parsing of that registry ).

<< She did not destroy my family,

This is an interesting one. There are people who do derive meaning from service such as this, but they do not strike me as a majority of the population. At best, it puts a heavy strain on the familial ties.. and for a very obvious reason.. it is not a light cross to bear. And we do like easy mode. But to actively deny that it is a strain is silly.. because while it did not break the author, the same issue definitely took some families down.

<< I want to know why regressive autism happens

I think most of us on this forum can agree that knowledge can be useful.

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.

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!

Some of those proposed adjustments are already in place in EU like the dyes. Regardless of possible autism link, it’s a good thing. But some are blinded by politics and can’t see that two things can be true. Trump Admin does bad things and good things

Why would a list of random "adjustments" lend legitimacy to their effort? If they told you that going barefoot and talking in Pig Latin would solve autism, would that give it legitimacy? Maybe soap is actually suppressing our natural bio-film so we should all forsake showering. I mean, someone could contrive a laughable explanation to justify that, and maybe make a graph that hygiene improvements worldwide correlated with the rise of ASD, so start stinkin' evenyone.

We know, with utter certainty, that the conclusion of this farce will be completely unproven lazy correlations that are so common in the scammer industry. Maybe it's seed oils, or HFCS, or the chemicals, etc. There is no outcome of RFK Jrs farce that won't be an absolute joke.

>The third reich response

Anyone who doesn't see incredible parallels with the rise of Hitler's heinous crimes is not paying attention. Oh look, they're going after the press and judges now, but don't worry until they're not suffixing the Hitler salutes with "my heart to yours" or something it surely can't be real. Further, the "they're going to make me believe this garbage person" argument is always laughable. No one buys it. People who like these creeps should just be honest about it and save the tired "you made me" bit that positively no one believes.

But sure, the only thing I can agree with you on is that the "autism is actually great" fringe is not helpful. Autism is not good, and most people with autism, even the ones who don't need around the clock care, would rather they didn't. ASD is likely basically a manifestation of evolution, and is biology playing random variations to test survivability, as it has done through human history. It gives us some super-intellectually focused individuals that contribute massively to humanity, but it also gives us a lot of very sad people who can't connect and sometimes need enormous levels of care.

Indeed, genetics are widely considered the prevalent "cause" of ASD. It's possible that autism really has become more common -- if it actually has and it isn't simply increased or more inclusive diagnoses -- because our information/engineering age has given people who carry ASD genetics more, errr, marketability on the reproduction market. Instead of being outcasts, what we used to call "Aspergers" sufferers, such as myself, suddenly make lots of money and get to be high status. But that's a lazy guess at most. But we do know that people on the ASD spectrum, including the most successful ones who found ways to make it work, are much more likely to have children on the spectrum, no outside environmental cause being necessary.

The state has made their intentions crystal clear…

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.

> 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.

https://encyclopedia.ushmm.org/content/en/article/euthanasia... "On August 18, 1939, the Reich Ministry of the Interior circulated a decree requiring all physicians, nurses, and midwives to report newborn infants and children under the age of three who showed signs of severe mental or physical disability." "Beginning in October 1939, public health authorities began to encourage parents of children with disabilities to admit their young children to one of a number of specially designated pediatric clinics throughout Germany and Austria. In reality, the clinics were children's killing wards. There, specially recruited medical staff murdered their young charges by lethal overdoses of medication or by starvation."

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.