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

254 points by perihelions 2y ago

cruzcampo 2y ago
[flagged]
- austin-cheney 2y ago
  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?
  - cruzcampo 2y ago
    Look at what the Serbians are doing. https://old.reddit.com/r/Damnthatsinteresting/comments/1jc0yn4/the_largest_protest_against_corruption_in_the/ https://old.reddit.com/r/Damnthatsinteresting/comments/1jc0y... https://en.wikipedia.org/wiki/2024%E2%80%93present_Serbian_anti-corruption_protests https://en.wikipedia.org/wiki/2024%E2%80%93present_Serbian_a... Be more like the Serbians. Don't just let things happen. You have agency. The government is supposed to be for the people, by the people - democracy doesn't only happen once every four years.
  - guerrilla 2y ago
    You should stop it from happening by any means necessary like last time. Organize. Talk to each other and figure out what all your options are. Do your threat modelling. Then act.
  - sorcerer-mar 2y ago
    1. Join up on your local 50501 protest, next one is on May 1: https://www.fiftyfifty.one/events https://www.fiftyfifty.one/events 2. Continue speaking loudly about the various criminal acts of this administration and continue reinforcing the importance of not tuning it out 3. Find promising candidates and fund their run in 2026 to flip the house and strangle the administration with impeachments over their long list of violations of the Constitution 4. Arm yourselves in general before the GOP finally decides they're okay with preventing certain people from buying firearms (specifically "mentally ill" people who don't like Trump, i.e. https://thehill.com/homenews/5200463-trump-derangement-syndrome-mental-illness-minnesota/ https://thehill.com/homenews/5200463-trump-derangement-syndr...) There's a great deal on an AR-15 at Palmetto State Armory right now — only $400!: https://palmettostatearmory.com/psa-pa15-16-phos-a2-mid-length-556-nato-classic-ar15-rifle-gray.html https://palmettostatearmory.com/psa-pa15-16-phos-a2-mid-leng... A lot of libs don't know this, but shooting is also extremely fun and gun people are extremely friendly and welcoming. Get a gun, book a lesson at your local range, and enjoy an afternoon learning how to use it. Guns are also a lot of fun for the gear-junkie types that I'm sure are overrepresented here on HN. EDIT: I changed the order of these, apologies to the commenter below!
    - kotaKat 2y ago
      #1: Not available in New York - if you're in the wrong red county, trying to apply for a semi-automatic rifle permit means having to argue with the GOP about your "good moral character" and have your permit get denied. This also assumes your county will process your application in a timely manner - mine's a nearly 11-12 month wait to process. Even hardcore red areas are becoming a nightmare to gain access to 2A rights :)
      - sorcerer-mar 2y ago
        All the more reason to start today! And yes the more general point is obviously gun ownership laws are highly localized. You should look up the requirements in your area and navigate them to acquire your very own check and balance, given that Congress has abdicated its role as such. It is very dangerous that so much of the right wing thinks that liberals are afraid of (and therefore do not own) firearms. The meme needs to be that liberals are just as armed as anyone else and are a credible backstop on tyranny.
      - germinalphrase 2y ago
        Obviously, locality matters - but in most of the country you can walk into a gun show, hand a random guy a fist full of cash, and walk out with a firearm.
    - tigerlily 2y ago
      Is it peace, to point the gun? Is it war, to fire the gun?
  - JoshTriplett 2y ago
    > They voted this in knowing this would happen. Many of them mocked anyone saying this would happen. And even now, there are people cheering on the idea of ignoring due process.
    - deleted 2y ago
      [deleted]
  - wizardforhire 2y ago
    If this is all really the case… which is hard to tell these days. You had better get to know your community quick because things they are a coming. History doesn’t repeat, but it rhymes.
  - metalman 2y ago
    if nothing else,vote with your wallet, buy used, eat a bit lower on the food chain, wear t shirts that might get you in trouble, spend more time on personal care so that you have the stamina and energy to help where you see that you can.
  - computerthings 2y ago
    [dead]
  - thrance 2y ago
    This country needs to crumble on itself, 30% of Americans are still behind Trump, whatever he does. This will not be fixed easily.
    - austin-cheney 2y ago
      I really believe it’s a messaging problem and a money problem. There is money guiding media to rally around a message/figure and it’s rewarded handsomely in return. That’s the problem to fix.
      - thrance 2y ago
        There will always be insane amounts of money towards right-wing propaganda in media. If it is ever made illegal, it will be lobbied into legality again. If lobbying is made illegal, politicians will be corrupted into allowing it. It would take something very radical to fix the massive imbalance of power in this world. Something I fear Amercians are not ready for. So let it burn, maybe something better will emerge from the ashes.
- kurtis_reed 2y ago
  Wanna bet?
- perihelions 2y ago
  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-kennedy-jr-s-statements-on-autism https://www.pbs.org/newshour/politics/fact-checking-robert-f...
  - PeterStuer 2y ago
    What percentage of the millions of twiteraty proudly putting autism in their bio would you guess are "non-toilet trained"?
    - Ygg2 2y ago
      Seeing some of them still wear diapers, I'm going to assume percentage higher than 0%. PS. I'm aware what it is.
  - arcticfox 2y ago
    He's specifically talking about nonverbal kids like mine. I'm sorry, it's a disability, and I'm terrified what's going to happen to my kid when I'm gone. I don't think RFK Jr's policies will help and I didn't vote for them. But the amount of frustration I have towards comments like yours that ignore our worlds is immense. At least RFK Jr speaks honestly and candidly. The challenges a level 1 autistic person faces are well recognized and good for network TV. finally - finally! - someone is talking about the rest of the population that face far greater challenges.
    - pkhuong 2y ago
      From context, I thought he was talking about 1 in 31 eight-year olds (https://www.cdc.gov/mmwr/volumes/74/ss/ss7402a1.htm?ACSTrackingID=USCDC_921-DM146435&ACSTrackingLabel=MMWR%2520Surveillance%2520Summaries%2520%E2%80%93%2520Vol.%252074%252C%2520April%252015%252C%25202025&deliveryName=USCDC_921-DM146435#T1_down https://www.cdc.gov/mmwr/volumes/74/ss/ss7402a1.htm?ACSTrack...)
- metalman 2y ago
  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.
- greenchair 2y ago
  [flagged]
  - cruzcampo 2y ago
    s/out/in/g
  - thrance 2y ago
    ...for another senile fool and much worse cronies. Congrats! See you in the camps.
- throw0101b 2y ago
  > ICE is gearing up to be the Gestapo. It should be noted that the Nazis took a lot of US policies from 1920/30s and ran with them just a little bit further. The Nazis were famous for eugenics, but it was quite big in the US as well, see for example: * https://www.npr.org/sections/health-shots/2016/03/07/469478098/the-supreme-court-ruling-that-led-to-70-000-forced-sterilizations https://www.npr.org/sections/health-shots/2016/03/07/4694780... * https://en.wikipedia.org/wiki/Buck_v._Bell https://en.wikipedia.org/wiki/Buck_v._Bell Their initial treatment/segregation of the Jews wasn't much different than treatment of blacks in the US.
  - atombender 2y ago
    Sorry, why should it be noted? What is the relevance of your comment other than whataboutism?
    - throw0101b 2y ago
      > Sorry, why should it be noted? What is the relevance of your comment other than whataboutism? It is worth noting because nowadays the Nazis are treated as evil incarnate, and the Allied side of WW2 the side of justice, but the history of the ideas behind the Nazis does not lie (entirely) with-in Germany. There is darkness in every society (including the US) and certain tendencies, and worth reminding people that these things can take hold anywhere, and not just "over there".
      - atombender 2y ago
        That is neither here nor there. Nobody has ever claimed evil started (or ended) with the Nazis. The US has committed unspeakable evil before and after, as have many other governments. The parent presumably singled out the Gestapo because it is one of the prime examples of a secret police detaining and punishing citizens without due process. The fact that the Gestapo didn't spring out of completely new ideas doesn't seem particularly relevant in this context. There are more apposite comparisons: The US internment programs of 1942–1945, or McCarthyism and the Red Scare.
viraptor 2y ago
https://archive.is/TEAAk https://archive.is/TEAAk
- keisborg 2y ago
  I get a cloudflare puzzle when I try to visit this link :(
  - QuantumGood 2y ago
    https://archive.is/20250425234110/https://www.washingtonpost.com/health/2025/04/25/autism-registry-privacy-rfk-research/ https://archive.is/20250425234110/https://www.washingtonpost...
  - justinclift 2y ago
    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.
formerly_proven 2y ago
The criteria for diagnosing ASD today are vastly different from those that would’ve resulted in an autism diagnosis shortly after the abolishment of lobotomy, it is hardly surprising the rate keeps going up as you widen the net.
- NomDePlum 2y ago
  What's the link between ASD and lobotomies?
  - cma 2y ago
    I think he's just trying to choose a point in time when mental healthcare was more primitive to go along with saying the diagnosis is more sophisticated now. A main thing is that people with autism would just be classified as generally mentally disabled and the rise in autism is highly tied a drop in that general diagnosis. I don't think that covers 100% of the rise but does seem to make up the big majority. U.S. special-education autism classification was created in 1994 and tied to a big rise in diagnosis. https://news.wisc.edu/data-provides-misleading-picture-of-autism/ https://news.wisc.edu/data-provides-misleading-picture-of-au...
    - NomDePlum 2y ago
      Thanks. That helps.
  - viraptor 2y ago
    Progress of understanding.
    - NomDePlum 2y ago
      Sorry, still not that clear to me. Are you saying that there is no direct link but rather understanding of various areas increased due to the stopping of this practice?
      - deleted 2y ago
lawn 2y ago
This is just another angle of placing people in camps. Combine this with the overzealous focus on transvestites and the so called "illegal aliens" you should see a pattern with where the Nazis began.
- prox 2y ago
  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.
  - yapyap 2y ago
    No he is saying putting people in camps like murder camps / forced labor camps / concentration camps. Not in camps like divided by opinion.
- torlok 2y ago
  Don't forget the obsession with IQ, even if it died down recently.
- european-pierre 2y ago
  https://encyclopedia.ushmm.org/content/en/article/euthanasia-program 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."
- 2y ago
BenFranklin100 2y ago
“Health and Human Services Secretary Robert F. Kennedy Jr., the nation’s top health official, repeatedly said before taking office that vaccines cause autism, despite overwhelming scientific evidence that they do not. He has declined to disavow his statements and has continued to promote a possible link.” Having worked directly with autism researchers, I can confidently tell you that RFK is making a wild guess not based in current evidence. All the data we have indicate autism is a multifactorial condition with a genetic/developmental component that may or may not be affected by the environment. RFK is genuinely a danger to health care in the United States.
- SiempreViernes 2y ago
  Calling it a "guess" seems very generous at this point, saying it is a "lie" is more accurate I think.
  - ohgr 2y ago
    Never attribute to malice what cannot be adequately explained by stupidity. And he is one stupid fuck.
    - ZeroGravitas 2y ago
      "Grift" might be a more appropriate term and so the more appropriate aphorism might be: > "It's difficult to get a man to understand something when his salary depends on not understanding it." -Upton Sinclair"
      - ohgr 2y ago
        That's completely fair.
    - QuadmasterXLII 2y ago
      Never attribute to stupidity what looks ambiguous between stupidity and malice but makes a shit ton of money.
    - 2y ago
deleted 2y ago
[deleted]
cycrutchfield 2y ago
https://en.wikipedia.org/wiki/Kakistocracy https://en.wikipedia.org/wiki/Kakistocracy
ohgr 2y ago
Aktion T4 next? This is a dark dark road. I suspect the US will become like Germany in the next few decades where the paranoia about handing any data over is justifiably high. I hope this burns the unethical side of the tech industry to the ground. It deserves it.
- Tireings 2y ago
  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
  - ohgr 2y ago
    I would leave that in the hands of professionals though. Which is evidentially not this lot. Not even remotely.
  - mschuster91 2y ago
    > Google is certified That doesn't matter _at all_ when the government comes knocking at Google's door - in the best case, they have a subpoena that can at least be appealed afterwards, in the worst case it's DOGE teens backed by a bunch of heavily armed guys in camouflage.
    - ohgr 2y ago
      Indeed. No data is safe or secure in such environments. This has become an issue big enough that the US company I work for is actually removing data from US cloud providers to make it harder to get at. The European divisions have started data sovereignty projects because it's now a principal risk. I'm out of the cloud as well.
      - A4ET8a8uTh0_v2 2y ago
        Ha. My company was advising having a burner phone when traveling to US in a company-wide meeting. There has been something of a shift.
BlueTemplar 2y ago
Ultimately, whether one thinks that having more volume of and more or less fragmented statistics is good or bad depends on their opinion of the State. Olivier Ray wrote a great book about the history of statistics : Quand le monde s’est fait nombre (fr) https://archive.org/details/OlivierReynombre/ https://archive.org/details/OlivierReynombre/ https://www.radiofrance.fr/franceculture/podcasts/les-chemins-de-la-philosophie/quand-le-monde-s-est-fait-nombre-d-olivier-rey-1493156 https://www.radiofrance.fr/franceculture/podcasts/les-chemin.... https://www.fnac.com/a9931250/Olivier-Rey-Quand-le-monde-s-est-fait-nombre https://www.fnac.com/a9931250/Olivier-Rey-Quand-le-monde-s-e...
- llbeansandrice 2y ago
  The state has made their intentions crystal clear…
cruzcampo 2y ago
[flagged]
47282847 2y ago
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.
- StefanBatory 2y ago
  "Do not commit the sin of empathy"
  - an0malous 2y ago
    “The fundamental weakness of Western civilization is empathy” — Elon on Joe Rogan It’s a core tenant of this Curtis Yarvin / neo reactionary ideology that seems to be shared by a lot of VCs
    - k__ 2y ago
      And then he cries on TV because people are not buying his cars. Can't make that crap up...
      - A4ET8a8uTh0_v2 2y ago
        The funny thing is it is the autists, who don't respond well to emotional appeals. Is that all it is? That it is harder to influence high functioning ones?
        watwut 2y ago
        Was he ever diagnozed? Because all his success is charizma and social skills based. This claim appears only when he needs to be excused. Also, it is super possible to be a harmful asshole and autist at the same time. Musk also do not care about morals, ethics or laws based appeals.
        A4ET8a8uTh0_v2 2y ago
mrtksn 2y ago
The controversy seems to be stemmed from American's relationship with their government. Most European countries do have many different(including autism and other stuff) centralized book keeping and registries to help with monitoring and management of certain deceases and conditions. During Covid-19 UK and Turkey were able to quickly iterate their response based on the centralized data collected and most of the EU also had similar stuff and later they were able to look back into the data to see if Covid or the vaccines caused further issues down the road. IMHO vaccines are much less controversial in those societies because it's pretty easy to look ot up when a Twitter influencer claims something. But hey, considering what happened the last few months maybe Americans have a point for their case. In most of the Europe governments collapse and streets burn for much less all the time, in US they don't appear to have a recourse for at least 4 years. Maybe its a good idea not to give the data to government affiliated billionaires that can crunch some numbers, feed the data to a machibne and come up with an optimization solutions like "If we can get rid of those suboptimal humans we can pay less income taxes". What are you going to do if the machine tells you that if an autist isn't making x amount of money by the age y it is drain to the society and the formula suggest that a deportation yields better outcomes financially?
Boogie_Man 2y ago
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 someone who is orientationally correct but frequently epistemologically incorrect. If it's just "eliminate all vaccines" then I'll be very disappointed. The third reich response a lot of other commenters are having is interesting. I'm no expert and have not investigated autism, but if the messaging in response to RFK JR is "yeah he says 1 in 36 kids have autism now but actually that's fine and how it always has been and actually autism is good and he's actually Eichmann" you're going to drive a lot of people right to every unsubstantiated thing he says.
- RacingTheClock 2y ago
  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!
  - Boogie_Man 2y ago
    I sincerely hope this is the explanation and I will be frustrated if this information is not presented as a percentage of the increase as part of the report. If it fully explains the increase, even better.
    - RacingTheClock 2y ago
      I agree that I’m frustrated that this isn’t being coveted. Asperger’s being moved into autism was huge news at the time, so idk how RFK missed something so obvious and is pointing to quackery like vaccines. I don’t understand how we got to the point where cranks are trying to to prove their assumptions instead of real scientists.
0x1ceb00da 2y ago
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 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 functioning and low functioning autism, high functioning autists face problems like not being able to communicate properly some of the time, and low functioning autists face problems like not even being able to tell their caretaker which part of their body is in pain, or which kid in the group punched them. Edit: The National Autistic Society is UK based but the situation is not that different in other countries.
- autoexec 2y ago
  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.
  - jdrek1 2y ago
    > and wearing a fitbit or smart watch. Since when is wearing smart watches only for autists?
    - autoexec 2y ago
      It's one of the many private data sources they were planning to use to track and collect data on autistic people for their database. https://people.com/rfk-jr-to-launch-autism-registry-using-private-health-records-11720156 https://people.com/rfk-jr-to-launch-autism-registry-using-pr... Autistic or not, giving that kind of health information to private for-profit companies who collect that data to use it against you or sell to third parties was never a good idea even before the government wanted to take it for themselves.
arcticfox 2y ago
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-child.html?unlocked_article_code=1.C08.hWX3.K0XZkxDcQ86Y&smid=url-share 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 already, is incredibly frustrating and in many ways harder to stomach than RFK Jr. RFK Jr is at a minimum a misguided nutjob - but he's also the only one to ever recognize our plight on a national stage.
- A4ET8a8uTh0_v2 2y ago
  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.
RacingTheClock 2y ago
[flagged]
reneretord 2y ago
[dead]
AStonesThrow 2y ago
The USA has always had a system of "social credit" similar to what we describe in China. Nobody calls it that here; nobody itemizes and articulates it the same way because we do not want to admit how similar we are to the Chinese, but we do have a very real system of "social credit" right here, and it's actively being used in all calculations. Here are a few examples of positive social credit: Do you serve your nation in the military? Do you bear and raise children? Are you a caregiver for other types of dependents (parents, disabled)? Are you able-bodied and employed or at least employable? How stable is your job? Are you currently enrolled as a student, seeking a degree or graduation? Are you in stable housing; can you meet your personal needs daily without difficulty? Are you free of mental illness, and medications thereof? Have you got a criminal record, imprisonment or legal troubles in your past? So you can see that autistic people will typically start with poor social credit, and it will not be possible for them to get on top of that. Now a wealthy nation in peacetime can afford to do the "Welfare State" thing and support people with negative social credit, due to pro-life values and the fact that you can indeed exploit the poor and infirm for Medicaid and SNAP bucks, no matter what (RFK's claim that "they don't pay taxes" is specious if they're consumers). But I think the USA can no longer claim to be "wealthy" and our claim on peace is tenuous at best. When those two run out then what is left? Nothing but a little Aktion T4. Difficult decisions will need to be made and this is why people with "poor social credit" are going to be under the microscope.

254 points by perihelions 2y ago

cruzcampo 2y ago

[flagged]

austin-cheney 2y ago
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?
- cruzcampo 2y ago
  Look at what the Serbians are doing. https://old.reddit.com/r/Damnthatsinteresting/comments/1jc0yn4/the_largest_protest_against_corruption_in_the/ https://old.reddit.com/r/Damnthatsinteresting/comments/1jc0y... https://en.wikipedia.org/wiki/2024%E2%80%93present_Serbian_anti-corruption_protests https://en.wikipedia.org/wiki/2024%E2%80%93present_Serbian_a... Be more like the Serbians. Don't just let things happen. You have agency. The government is supposed to be for the people, by the people - democracy doesn't only happen once every four years.
- guerrilla 2y ago
  You should stop it from happening by any means necessary like last time. Organize. Talk to each other and figure out what all your options are. Do your threat modelling. Then act.
- sorcerer-mar 2y ago
  1. Join up on your local 50501 protest, next one is on May 1: https://www.fiftyfifty.one/events https://www.fiftyfifty.one/events 2. Continue speaking loudly about the various criminal acts of this administration and continue reinforcing the importance of not tuning it out 3. Find promising candidates and fund their run in 2026 to flip the house and strangle the administration with impeachments over their long list of violations of the Constitution 4. Arm yourselves in general before the GOP finally decides they're okay with preventing certain people from buying firearms (specifically "mentally ill" people who don't like Trump, i.e. https://thehill.com/homenews/5200463-trump-derangement-syndrome-mental-illness-minnesota/ https://thehill.com/homenews/5200463-trump-derangement-syndr...) There's a great deal on an AR-15 at Palmetto State Armory right now — only $400!: https://palmettostatearmory.com/psa-pa15-16-phos-a2-mid-length-556-nato-classic-ar15-rifle-gray.html https://palmettostatearmory.com/psa-pa15-16-phos-a2-mid-leng... A lot of libs don't know this, but shooting is also extremely fun and gun people are extremely friendly and welcoming. Get a gun, book a lesson at your local range, and enjoy an afternoon learning how to use it. Guns are also a lot of fun for the gear-junkie types that I'm sure are overrepresented here on HN. EDIT: I changed the order of these, apologies to the commenter below!
  - kotaKat 2y ago
    #1: Not available in New York - if you're in the wrong red county, trying to apply for a semi-automatic rifle permit means having to argue with the GOP about your "good moral character" and have your permit get denied. This also assumes your county will process your application in a timely manner - mine's a nearly 11-12 month wait to process. Even hardcore red areas are becoming a nightmare to gain access to 2A rights :)
    - sorcerer-mar 2y ago
      All the more reason to start today! And yes the more general point is obviously gun ownership laws are highly localized. You should look up the requirements in your area and navigate them to acquire your very own check and balance, given that Congress has abdicated its role as such. It is very dangerous that so much of the right wing thinks that liberals are afraid of (and therefore do not own) firearms. The meme needs to be that liberals are just as armed as anyone else and are a credible backstop on tyranny.
    - germinalphrase 2y ago
      Obviously, locality matters - but in most of the country you can walk into a gun show, hand a random guy a fist full of cash, and walk out with a firearm.
  - tigerlily 2y ago
    Is it peace, to point the gun? Is it war, to fire the gun?
- JoshTriplett 2y ago
  > They voted this in knowing this would happen. Many of them mocked anyone saying this would happen. And even now, there are people cheering on the idea of ignoring due process.
  - deleted 2y ago
    [deleted]
- wizardforhire 2y ago
  If this is all really the case… which is hard to tell these days. You had better get to know your community quick because things they are a coming. History doesn’t repeat, but it rhymes.
- metalman 2y ago
  if nothing else,vote with your wallet, buy used, eat a bit lower on the food chain, wear t shirts that might get you in trouble, spend more time on personal care so that you have the stamina and energy to help where you see that you can.
- computerthings 2y ago
  [dead]
- thrance 2y ago
  This country needs to crumble on itself, 30% of Americans are still behind Trump, whatever he does. This will not be fixed easily.
  - austin-cheney 2y ago
    I really believe it’s a messaging problem and a money problem. There is money guiding media to rally around a message/figure and it’s rewarded handsomely in return. That’s the problem to fix.
    - thrance 2y ago
      There will always be insane amounts of money towards right-wing propaganda in media. If it is ever made illegal, it will be lobbied into legality again. If lobbying is made illegal, politicians will be corrupted into allowing it. It would take something very radical to fix the massive imbalance of power in this world. Something I fear Amercians are not ready for. So let it burn, maybe something better will emerge from the ashes.
kurtis_reed 2y ago
Wanna bet?
perihelions 2y ago
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-kennedy-jr-s-statements-on-autism https://www.pbs.org/newshour/politics/fact-checking-robert-f...
- PeterStuer 2y ago
  What percentage of the millions of twiteraty proudly putting autism in their bio would you guess are "non-toilet trained"?
  - Ygg2 2y ago
    Seeing some of them still wear diapers, I'm going to assume percentage higher than 0%. PS. I'm aware what it is.
- arcticfox 2y ago
  He's specifically talking about nonverbal kids like mine. I'm sorry, it's a disability, and I'm terrified what's going to happen to my kid when I'm gone. I don't think RFK Jr's policies will help and I didn't vote for them. But the amount of frustration I have towards comments like yours that ignore our worlds is immense. At least RFK Jr speaks honestly and candidly. The challenges a level 1 autistic person faces are well recognized and good for network TV. finally - finally! - someone is talking about the rest of the population that face far greater challenges.
  - pkhuong 2y ago
    From context, I thought he was talking about 1 in 31 eight-year olds (https://www.cdc.gov/mmwr/volumes/74/ss/ss7402a1.htm?ACSTrackingID=USCDC_921-DM146435&ACSTrackingLabel=MMWR%2520Surveillance%2520Summaries%2520%E2%80%93%2520Vol.%252074%252C%2520April%252015%252C%25202025&deliveryName=USCDC_921-DM146435#T1_down https://www.cdc.gov/mmwr/volumes/74/ss/ss7402a1.htm?ACSTrack...)
metalman 2y ago
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.
greenchair 2y ago
[flagged]
- cruzcampo 2y ago
  s/out/in/g
- thrance 2y ago
  ...for another senile fool and much worse cronies. Congrats! See you in the camps.
throw0101b 2y ago
> ICE is gearing up to be the Gestapo. It should be noted that the Nazis took a lot of US policies from 1920/30s and ran with them just a little bit further. The Nazis were famous for eugenics, but it was quite big in the US as well, see for example: * https://www.npr.org/sections/health-shots/2016/03/07/469478098/the-supreme-court-ruling-that-led-to-70-000-forced-sterilizations https://www.npr.org/sections/health-shots/2016/03/07/4694780... * https://en.wikipedia.org/wiki/Buck_v._Bell https://en.wikipedia.org/wiki/Buck_v._Bell Their initial treatment/segregation of the Jews wasn't much different than treatment of blacks in the US.
- atombender 2y ago
  Sorry, why should it be noted? What is the relevance of your comment other than whataboutism?
  - throw0101b 2y ago
    > Sorry, why should it be noted? What is the relevance of your comment other than whataboutism? It is worth noting because nowadays the Nazis are treated as evil incarnate, and the Allied side of WW2 the side of justice, but the history of the ideas behind the Nazis does not lie (entirely) with-in Germany. There is darkness in every society (including the US) and certain tendencies, and worth reminding people that these things can take hold anywhere, and not just "over there".
    - atombender 2y ago
      That is neither here nor there. Nobody has ever claimed evil started (or ended) with the Nazis. The US has committed unspeakable evil before and after, as have many other governments. The parent presumably singled out the Gestapo because it is one of the prime examples of a secret police detaining and punishing citizens without due process. The fact that the Gestapo didn't spring out of completely new ideas doesn't seem particularly relevant in this context. There are more apposite comparisons: The US internment programs of 1942–1945, or McCarthyism and the Red Scare.

viraptor 2y ago

https://archive.is/TEAAk https://archive.is/TEAAk

keisborg 2y ago
I get a cloudflare puzzle when I try to visit this link :(
- QuantumGood 2y ago
  https://archive.is/20250425234110/https://www.washingtonpost.com/health/2025/04/25/autism-registry-privacy-rfk-research/ https://archive.is/20250425234110/https://www.washingtonpost...
- justinclift 2y ago
  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.

formerly_proven 2y ago

The criteria for diagnosing ASD today are vastly different from those that would’ve resulted in an autism diagnosis shortly after the abolishment of lobotomy, it is hardly surprising the rate keeps going up as you widen the net.

NomDePlum 2y ago
What's the link between ASD and lobotomies?
- cma 2y ago
  I think he's just trying to choose a point in time when mental healthcare was more primitive to go along with saying the diagnosis is more sophisticated now. A main thing is that people with autism would just be classified as generally mentally disabled and the rise in autism is highly tied a drop in that general diagnosis. I don't think that covers 100% of the rise but does seem to make up the big majority. U.S. special-education autism classification was created in 1994 and tied to a big rise in diagnosis. https://news.wisc.edu/data-provides-misleading-picture-of-autism/ https://news.wisc.edu/data-provides-misleading-picture-of-au...
  - NomDePlum 2y ago
    Thanks. That helps.
- viraptor 2y ago
  Progress of understanding.
  - NomDePlum 2y ago
    Sorry, still not that clear to me. Are you saying that there is no direct link but rather understanding of various areas increased due to the stopping of this practice?
    - deleted 2y ago

lawn 2y ago

This is just another angle of placing people in camps. Combine this with the overzealous focus on transvestites and the so called "illegal aliens" you should see a pattern with where the Nazis began.

prox 2y ago
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.
- yapyap 2y ago
  No he is saying putting people in camps like murder camps / forced labor camps / concentration camps. Not in camps like divided by opinion.
torlok 2y ago
Don't forget the obsession with IQ, even if it died down recently.
european-pierre 2y ago
https://encyclopedia.ushmm.org/content/en/article/euthanasia-program 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."
2y ago

BenFranklin100 2y ago

“Health and Human Services Secretary Robert F. Kennedy Jr., the nation’s top health official, repeatedly said before taking office that vaccines cause autism, despite overwhelming scientific evidence that they do not. He has declined to disavow his statements and has continued to promote a possible link.” Having worked directly with autism researchers, I can confidently tell you that RFK is making a wild guess not based in current evidence. All the data we have indicate autism is a multifactorial condition with a genetic/developmental component that may or may not be affected by the environment. RFK is genuinely a danger to health care in the United States.

SiempreViernes 2y ago
Calling it a "guess" seems very generous at this point, saying it is a "lie" is more accurate I think.
- ohgr 2y ago
  Never attribute to malice what cannot be adequately explained by stupidity. And he is one stupid fuck.
  - ZeroGravitas 2y ago
    "Grift" might be a more appropriate term and so the more appropriate aphorism might be: > "It's difficult to get a man to understand something when his salary depends on not understanding it." -Upton Sinclair"
    - ohgr 2y ago
      That's completely fair.
  - QuadmasterXLII 2y ago
    Never attribute to stupidity what looks ambiguous between stupidity and malice but makes a shit ton of money.
  - 2y ago

deleted 2y ago

[deleted]

cycrutchfield 2y ago

https://en.wikipedia.org/wiki/Kakistocracy https://en.wikipedia.org/wiki/Kakistocracy

ohgr 2y ago

Aktion T4 next? This is a dark dark road. I suspect the US will become like Germany in the next few decades where the paranoia about handing any data over is justifiably high. I hope this burns the unethical side of the tech industry to the ground. It deserves it.

Tireings 2y ago
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
- ohgr 2y ago
  I would leave that in the hands of professionals though. Which is evidentially not this lot. Not even remotely.
- mschuster91 2y ago
  > Google is certified That doesn't matter _at all_ when the government comes knocking at Google's door - in the best case, they have a subpoena that can at least be appealed afterwards, in the worst case it's DOGE teens backed by a bunch of heavily armed guys in camouflage.
  - ohgr 2y ago
    Indeed. No data is safe or secure in such environments. This has become an issue big enough that the US company I work for is actually removing data from US cloud providers to make it harder to get at. The European divisions have started data sovereignty projects because it's now a principal risk. I'm out of the cloud as well.
    - A4ET8a8uTh0_v2 2y ago
      Ha. My company was advising having a burner phone when traveling to US in a company-wide meeting. There has been something of a shift.

BlueTemplar 2y ago

Ultimately, whether one thinks that having more volume of and more or less fragmented statistics is good or bad depends on their opinion of the State. Olivier Ray wrote a great book about the history of statistics : Quand le monde s’est fait nombre (fr) https://archive.org/details/OlivierReynombre/ https://archive.org/details/OlivierReynombre/ https://www.radiofrance.fr/franceculture/podcasts/les-chemins-de-la-philosophie/quand-le-monde-s-est-fait-nombre-d-olivier-rey-1493156 https://www.radiofrance.fr/franceculture/podcasts/les-chemin.... https://www.fnac.com/a9931250/Olivier-Rey-Quand-le-monde-s-est-fait-nombre https://www.fnac.com/a9931250/Olivier-Rey-Quand-le-monde-s-e...

llbeansandrice 2y ago
The state has made their intentions crystal clear…

cruzcampo 2y ago

[flagged]

47282847 2y ago

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.

StefanBatory 2y ago
"Do not commit the sin of empathy"
- an0malous 2y ago
  “The fundamental weakness of Western civilization is empathy” — Elon on Joe Rogan It’s a core tenant of this Curtis Yarvin / neo reactionary ideology that seems to be shared by a lot of VCs
  - k__ 2y ago
    And then he cries on TV because people are not buying his cars. Can't make that crap up...
    - A4ET8a8uTh0_v2 2y ago
      The funny thing is it is the autists, who don't respond well to emotional appeals. Is that all it is? That it is harder to influence high functioning ones?
      - watwut 2y ago
        Was he ever diagnozed? Because all his success is charizma and social skills based. This claim appears only when he needs to be excused. Also, it is super possible to be a harmful asshole and autist at the same time. Musk also do not care about morals, ethics or laws based appeals.
        A4ET8a8uTh0_v2 2y ago

mrtksn 2y ago

The controversy seems to be stemmed from American's relationship with their government. Most European countries do have many different(including autism and other stuff) centralized book keeping and registries to help with monitoring and management of certain deceases and conditions. During Covid-19 UK and Turkey were able to quickly iterate their response based on the centralized data collected and most of the EU also had similar stuff and later they were able to look back into the data to see if Covid or the vaccines caused further issues down the road. IMHO vaccines are much less controversial in those societies because it's pretty easy to look ot up when a Twitter influencer claims something. But hey, considering what happened the last few months maybe Americans have a point for their case. In most of the Europe governments collapse and streets burn for much less all the time, in US they don't appear to have a recourse for at least 4 years. Maybe its a good idea not to give the data to government affiliated billionaires that can crunch some numbers, feed the data to a machibne and come up with an optimization solutions like "If we can get rid of those suboptimal humans we can pay less income taxes". What are you going to do if the machine tells you that if an autist isn't making x amount of money by the age y it is drain to the society and the formula suggest that a deportation yields better outcomes financially?

Boogie_Man 2y ago

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 someone who is orientationally correct but frequently epistemologically incorrect. If it's just "eliminate all vaccines" then I'll be very disappointed. The third reich response a lot of other commenters are having is interesting. I'm no expert and have not investigated autism, but if the messaging in response to RFK JR is "yeah he says 1 in 36 kids have autism now but actually that's fine and how it always has been and actually autism is good and he's actually Eichmann" you're going to drive a lot of people right to every unsubstantiated thing he says.

RacingTheClock 2y ago
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!
- Boogie_Man 2y ago
  I sincerely hope this is the explanation and I will be frustrated if this information is not presented as a percentage of the increase as part of the report. If it fully explains the increase, even better.
  - RacingTheClock 2y ago
    I agree that I’m frustrated that this isn’t being coveted. Asperger’s being moved into autism was huge news at the time, so idk how RFK missed something so obvious and is pointing to quackery like vaccines. I don’t understand how we got to the point where cranks are trying to to prove their assumptions instead of real scientists.

0x1ceb00da 2y ago

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 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 functioning and low functioning autism, high functioning autists face problems like not being able to communicate properly some of the time, and low functioning autists face problems like not even being able to tell their caretaker which part of their body is in pain, or which kid in the group punched them. Edit: The National Autistic Society is UK based but the situation is not that different in other countries.

autoexec 2y ago
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.
- jdrek1 2y ago
  > and wearing a fitbit or smart watch. Since when is wearing smart watches only for autists?
  - autoexec 2y ago
    It's one of the many private data sources they were planning to use to track and collect data on autistic people for their database. https://people.com/rfk-jr-to-launch-autism-registry-using-private-health-records-11720156 https://people.com/rfk-jr-to-launch-autism-registry-using-pr... Autistic or not, giving that kind of health information to private for-profit companies who collect that data to use it against you or sell to third parties was never a good idea even before the government wanted to take it for themselves.

arcticfox 2y ago

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-child.html?unlocked_article_code=1.C08.hWX3.K0XZkxDcQ86Y&smid=url-share 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 already, is incredibly frustrating and in many ways harder to stomach than RFK Jr. RFK Jr is at a minimum a misguided nutjob - but he's also the only one to ever recognize our plight on a national stage.

A4ET8a8uTh0_v2 2y ago
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.

RacingTheClock 2y ago

[flagged]

reneretord 2y ago

[dead]

AStonesThrow 2y ago

The USA has always had a system of "social credit" similar to what we describe in China. Nobody calls it that here; nobody itemizes and articulates it the same way because we do not want to admit how similar we are to the Chinese, but we do have a very real system of "social credit" right here, and it's actively being used in all calculations. Here are a few examples of positive social credit: Do you serve your nation in the military? Do you bear and raise children? Are you a caregiver for other types of dependents (parents, disabled)? Are you able-bodied and employed or at least employable? How stable is your job? Are you currently enrolled as a student, seeking a degree or graduation? Are you in stable housing; can you meet your personal needs daily without difficulty? Are you free of mental illness, and medications thereof? Have you got a criminal record, imprisonment or legal troubles in your past? So you can see that autistic people will typically start with poor social credit, and it will not be possible for them to get on top of that. Now a wealthy nation in peacetime can afford to do the "Welfare State" thing and support people with negative social credit, due to pro-life values and the fact that you can indeed exploit the poor and infirm for Medicaid and SNAP bucks, no matter what (RFK's claim that "they don't pay taxes" is specious if they're consumers). But I think the USA can no longer claim to be "wealthy" and our claim on peace is tenuous at best. When those two run out then what is left? Nothing but a little Aktion T4. Difficult decisions will need to be made and this is why people with "poor social credit" are going to be under the microscope.