5 ms·

RFK Jr. Set to Launch Disease Registry Tracking Autistic People

62 points by colinprince 2y ago

cratermoon 2y ago
Related: https://pmc.ncbi.nlm.nih.gov/articles/PMC2800142/ https://pmc.ncbi.nlm.nih.gov/articles/PMC2800142/
- worik 2y ago
  That seems far fetched, I hope it is But given that autism seems largely genetic in origin, and RFK has promised a cure, then eugenics is not far fetched
  - viraptor 2y ago
    Every week a far fetched thing happens for the last few months. Somehow people keep saying the far fetched things will not continue to get too evil...
  - cratermoon 2y ago
    > That seems far fetched "It can't happen here"
  - voidspark 2y ago
    [flagged]
    - viraptor 2y ago
      The rate of autism DIAGNOSIS has increased Before we had lots of people who everyone knew were "a bit weird".
      - voidspark 2y ago
        That's a meme, not based in reality or scientific data. If that was true, then 70 year olds would have the same increase in autism diagnosis, but they have not. Nonverbal autism has increased significantly, by at least one order of magnitude. There is no way anyone could have missed that.
        kadoban 2y ago
        ~Nobody is diagnosing 70 year olds. Children get looked at _far_ more than anyone else, anyone older that would have been diagnosed has learned to cope, died or been written off by society in one way or another.
        voidspark 2y ago
        I am talking about severe cases where they need full time care for their entire life. Nonverbal. Obvious. Impossible to miss. Autism ranges from mild to extremely severe.
        saxonww 2y ago
        I think the answer to your question is that most people impacted to the severe degree you're imagining don't live till 70. I don't know what the condition was, but I had an aunt who was affected by 'something' and was disabled in many of the same ways you imagine; she was nonverbal and needed full time care from a young age. She lived to 43, and towards the end they had to put in a feeding tube for her. I have a couple of questions for you: 1. Have you ever personally seen a 'severe case' of autism where someone needs full time care for their entire life? Where are you getting your information about the degree and prevalence of this? 2. Putting "cases are clearly on the rise" alongside "where are the 70 year old severely autistic people" implies that you (via RFK Jr.) think that the number of severe cases is on the rise, not just that more people are being diagnosed with some level of autism. Do you know severe cases are on the rise, or are you (or RFK Jr.) just making some assumptions? The reason I ask #2 is that the 'severe autism' we're imagining in this narrative would be, as you point out, obvious. But what if our understanding of symptoms has gotten better, and we're diagnosing more not-obvious cases, i.e. not severe cases. Please keep in mind that the first person officially diagnosed with autism only died a couple of years ago. Donald Triplett. He lived to be 89, by the way.
        deleted 2y ago
        [deleted]
        2y ago
    - Vortigaunt 2y ago
      If we were back in the 1930's would you be worrying about the rate[0] of people being diagnosed with left-handedness?[1] [0]https://media.springernature.com/lw685/springer-static/image/art%3A10.1186%2Fs13690-023-01156-6/MediaObjects/13690_2023_1156_Fig2_HTML.png https://media.springernature.com/lw685/springer-static/image... [1]https://archpublichealth.biomedcentral.com/articles/10.1186/s13690-023-01156-6 https://archpublichealth.biomedcentral.com/articles/10.1186/...
      - voidspark 2y ago
        [flagged]
  - cjbgkagh 2y ago
    I have autism and in my case it’s clearly genetic given that I also have hEDS which is a common comorbidity that is autosomal dominant. The RCCX genetic theory of giftedness does appear to explain what I’ve been about to observe in myself and others. I’m less familiar with the more extreme levels of dysfunctional autism. On one had the poor health sucks, on the other hand being gifted is pretty fun. With the less severe cases that I’m more familiar with I think it is largely treatable, I’m on a long list of meds that have been pretty effective for me. It would be great the end result of this initiative would be the spreading of existing knowledge and the creation of new knowledge. With modern understanding of medicine and genetics people can be helped in ways they could not have been before - which would obviate the need for eugenics.
viraptor 2y ago
The link should've be relevant these days, yet here we are... https://en.wikipedia.org/wiki/Aktion_T4 https://en.wikipedia.org/wiki/Aktion_T4
- cjbgkagh 2y ago
  Many countries already have MAID style voluntary euthanasia, and as someone with ME/CFS I know many people pressured into taking that option. So in that way I consider the early stages of Aktion T4 “Life unworthy of life” to already be with us and something I’ve been warning people about.
  - gerikson 2y ago
    That sounds terrible. Is the pressure coming from medical professionals or caregivers?
    - cjbgkagh 2y ago
      It’s a very natural progression - an emergent behavior from an aversion to empathy so it’s pretty much pervasive. Generally people think you’re faking it because you look healthy and it’s almost a dare to say if it was really as bad as you’d say surely you’d just prefer to die. My favorite examples are from people who believe they have a cure all, going for walks, vitamin C injections etc. Then when let them know it doesn’t work, you’ve tried it, it makes you sicker etc they’ll blame you for not doing it right and being difficult on purpose. It really doesn’t help when the state is quick to diagnose people with hypochondria, and there is the catch-22 of if didn’t manage to fill out the proper forms you don’t have the condition but if you did then that’s a sign you don’t have the condition. And even if you are correctly diagnosed they don’t help, the doctors will push their pet cures like exercise. My aunt had what little quality of life she had left destroyed by doctors requiring her to exercise to keep her disability. If you complain about a lack of disability support potentially sending you homeless they think they’re helping by suggesting another option you may not have thought of. I’m very fortunate that I’m well off enough I don’t have to deal with the state and I manage my own health much better than the doctors could. But it happens to people I know and in many cases people who do take up the option do let others know that the reason they’re doing it is because they can’t afford to live anymore and homelessness is practically a death sentence anyway. And even worse there are a number of fairly effective treatments but few people know about them because of the way medical science works. I was early on the use of GLP1-As and thank goodness that’s now going widespread in patient communities and even doctors - though I think doses should be kept very low. Off label use of GLP1-As for autoimmune disorders, including many mental health issues, is going to be absolutely huge.
worik 2y ago
My doctor thought I was being idiotic when I explained I would not discuss possibly incriminating and or humiliating matters with them if they wrote notes for their system "Totally secure" they said I was worried about nefarious access. Turns out, I should have been more worried than that.
- schrectacular 2y ago
  Ha, you should have gone to the cybersecurity for a diagnosis!
- kcplate 2y ago
  So you won’t discuss possibly relevant information to an expert diagnostician that you are relying on for your healthcare? Why go at all then?
lawn 2y ago
How about tackling deadly and preventable diseases instead of the Autism Boogeyman? Measles for example?
- vasco 2y ago
  [flagged]
- tedunangst 2y ago
  We were too successful in eradicating measles, so now everybody knows somebody with autism, but nobody can remember measles. or polio.
slicktux 2y ago
Time to switch back to my Casio F91W
totierne2 2y ago
I am in a similar situation. Mental health issue: bipolar as a spectrum not an on/off. It also often has comorbidities. But bipolar is treated first!
- totierne2 2y ago
  There was a doing something about the slightly ill, or healthy at the edge of the overton window, taking away from the extreme cases getting treatment or attention angle. The sceptic might say there is no clear useful additional treatment or attention! Extreme autism may different. Treated more by Labour rather than chemicals.
captnObvious 2y ago
Another 2015 study examined students in U.S. special education programs between 2000 and 2010. The number of autistic children who enrolled in special education tripled from 93,624 to 419,647. In the same time frame, however, the number of children labeled as having an “intellectual disability” declined from 637,270 to 457,478. The shift of children from one diagnostic category to another explained two thirds of the increase in autism in this population, researchers say. https://www.scientificamerican.com/article/the-real-reason-autism-rates-are-rising/ https://www.scientificamerican.com/article/the-real-reason-a... Some portion of the rise in autism rates may be unrelated to better diagnosis. The likelihood of having an autistic child increases for older parents, and there is a societal trend toward delaying childbirth across developed countries. Children who are born prematurely are also at a heightened risk of autism, and improved neonatal care means many more of these children are surviving to childhood and beyond.
- captnObvious 2y ago
  As Secretary of Health and Human Services, Kennedy promised “some” of the answers to the causes of autism by September. But his “start from scratch” approach largely ignores research that has already been done. For example, Kennedy told reporters the initiative would look at ultrasounds during pregnancy as a possible risk factor. But a comprehensive multisite study of more than 1,500 pregnancies that found no link between autism and ultrasound use was published as recently as 2023. And scientists definitively ruled out the measles, mumps and rubella (MMR) vaccine as a cause of autism a decade ago (and again in 2019). In addition, the primary study that had suggested a link between the MMR vaccine and autism was found to have falsified data. Despite this, federal officials said in March that the Centers for Disease Control and Prevention will conduct a study to investigate a link between vaccines and autism. The study will be led by a vaccine skeptic who was previously disciplined for practicing medicine without a license. https://www.statnews.com/2025/03/26/rfk-jr-vaccine-study-of-autism-links-led-by-vaccine-critic-scientists-shocked/ https://www.statnews.com/2025/03/26/rfk-jr-vaccine-study-of-...
smallerize 2y ago
Already walked back https://www.statnews.com/2025/04/24/no-new-autism-registry-hhs-says-contradicting-nih-director-jay-bhattacharya-claim/ https://www.statnews.com/2025/04/24/no-new-autism-registry-h...
- fragmede 2y ago
  > Instead, the official said, HHS will launch a $50 million research effort to understand the causes of autism spectrum disorder and improve treatments. Great that they walked it back, but it's hard not read between the lines and see that as "we're gonna waste a pile of money on the question of if vaccines cause autism".
  - Yizahi 2y ago
    He already said that he will have "cause" for autism in September. I'm guessing he has all the research answers ready about "bad vaccines", straight from the Newsmax or whatever he is watching.
apexalpha 2y ago
I don't know but I would NOT register myself like this with this government. What good could ever come from this?
- saxonww 2y ago
  This is a reason people got upset. Nothing about it appeared to be opt-in.
- Yizahi 2y ago
  It's not about doing good. It's about mandatory labor camps, he has already announced in some interview. To be clear, for now he says that those would be voluntary. But when ever did an autocrat establish labor camps and not make them a prison for undesirables?
Yizahi 2y ago
There should be a registry of known psychopaths, with mango mussolini topping the chart.

62 points by colinprince 2y ago

cratermoon 2y ago

Related: https://pmc.ncbi.nlm.nih.gov/articles/PMC2800142/ https://pmc.ncbi.nlm.nih.gov/articles/PMC2800142/

worik 2y ago
That seems far fetched, I hope it is But given that autism seems largely genetic in origin, and RFK has promised a cure, then eugenics is not far fetched
- viraptor 2y ago
  Every week a far fetched thing happens for the last few months. Somehow people keep saying the far fetched things will not continue to get too evil...
- cratermoon 2y ago
  > That seems far fetched "It can't happen here"
- voidspark 2y ago
  [flagged]
  - viraptor 2y ago
    The rate of autism DIAGNOSIS has increased Before we had lots of people who everyone knew were "a bit weird".
    - voidspark 2y ago
      That's a meme, not based in reality or scientific data. If that was true, then 70 year olds would have the same increase in autism diagnosis, but they have not. Nonverbal autism has increased significantly, by at least one order of magnitude. There is no way anyone could have missed that.
      - kadoban 2y ago
        ~Nobody is diagnosing 70 year olds. Children get looked at _far_ more than anyone else, anyone older that would have been diagnosed has learned to cope, died or been written off by society in one way or another.
        voidspark 2y ago
        I am talking about severe cases where they need full time care for their entire life. Nonverbal. Obvious. Impossible to miss. Autism ranges from mild to extremely severe.
        saxonww 2y ago
        I think the answer to your question is that most people impacted to the severe degree you're imagining don't live till 70. I don't know what the condition was, but I had an aunt who was affected by 'something' and was disabled in many of the same ways you imagine; she was nonverbal and needed full time care from a young age. She lived to 43, and towards the end they had to put in a feeding tube for her. I have a couple of questions for you: 1. Have you ever personally seen a 'severe case' of autism where someone needs full time care for their entire life? Where are you getting your information about the degree and prevalence of this? 2. Putting "cases are clearly on the rise" alongside "where are the 70 year old severely autistic people" implies that you (via RFK Jr.) think that the number of severe cases is on the rise, not just that more people are being diagnosed with some level of autism. Do you know severe cases are on the rise, or are you (or RFK Jr.) just making some assumptions? The reason I ask #2 is that the 'severe autism' we're imagining in this narrative would be, as you point out, obvious. But what if our understanding of symptoms has gotten better, and we're diagnosing more not-obvious cases, i.e. not severe cases. Please keep in mind that the first person officially diagnosed with autism only died a couple of years ago. Donald Triplett. He lived to be 89, by the way.
        deleted 2y ago
        [deleted]
        2y ago
  - Vortigaunt 2y ago
    If we were back in the 1930's would you be worrying about the rate[0] of people being diagnosed with left-handedness?[1] [0]https://media.springernature.com/lw685/springer-static/image/art%3A10.1186%2Fs13690-023-01156-6/MediaObjects/13690_2023_1156_Fig2_HTML.png https://media.springernature.com/lw685/springer-static/image... [1]https://archpublichealth.biomedcentral.com/articles/10.1186/s13690-023-01156-6 https://archpublichealth.biomedcentral.com/articles/10.1186/...
    - voidspark 2y ago
      [flagged]
- cjbgkagh 2y ago
  I have autism and in my case it’s clearly genetic given that I also have hEDS which is a common comorbidity that is autosomal dominant. The RCCX genetic theory of giftedness does appear to explain what I’ve been about to observe in myself and others. I’m less familiar with the more extreme levels of dysfunctional autism. On one had the poor health sucks, on the other hand being gifted is pretty fun. With the less severe cases that I’m more familiar with I think it is largely treatable, I’m on a long list of meds that have been pretty effective for me. It would be great the end result of this initiative would be the spreading of existing knowledge and the creation of new knowledge. With modern understanding of medicine and genetics people can be helped in ways they could not have been before - which would obviate the need for eugenics.

viraptor 2y ago

The link should've be relevant these days, yet here we are... https://en.wikipedia.org/wiki/Aktion_T4 https://en.wikipedia.org/wiki/Aktion_T4

cjbgkagh 2y ago
Many countries already have MAID style voluntary euthanasia, and as someone with ME/CFS I know many people pressured into taking that option. So in that way I consider the early stages of Aktion T4 “Life unworthy of life” to already be with us and something I’ve been warning people about.
- gerikson 2y ago
  That sounds terrible. Is the pressure coming from medical professionals or caregivers?
  - cjbgkagh 2y ago
    It’s a very natural progression - an emergent behavior from an aversion to empathy so it’s pretty much pervasive. Generally people think you’re faking it because you look healthy and it’s almost a dare to say if it was really as bad as you’d say surely you’d just prefer to die. My favorite examples are from people who believe they have a cure all, going for walks, vitamin C injections etc. Then when let them know it doesn’t work, you’ve tried it, it makes you sicker etc they’ll blame you for not doing it right and being difficult on purpose. It really doesn’t help when the state is quick to diagnose people with hypochondria, and there is the catch-22 of if didn’t manage to fill out the proper forms you don’t have the condition but if you did then that’s a sign you don’t have the condition. And even if you are correctly diagnosed they don’t help, the doctors will push their pet cures like exercise. My aunt had what little quality of life she had left destroyed by doctors requiring her to exercise to keep her disability. If you complain about a lack of disability support potentially sending you homeless they think they’re helping by suggesting another option you may not have thought of. I’m very fortunate that I’m well off enough I don’t have to deal with the state and I manage my own health much better than the doctors could. But it happens to people I know and in many cases people who do take up the option do let others know that the reason they’re doing it is because they can’t afford to live anymore and homelessness is practically a death sentence anyway. And even worse there are a number of fairly effective treatments but few people know about them because of the way medical science works. I was early on the use of GLP1-As and thank goodness that’s now going widespread in patient communities and even doctors - though I think doses should be kept very low. Off label use of GLP1-As for autoimmune disorders, including many mental health issues, is going to be absolutely huge.

worik 2y ago

My doctor thought I was being idiotic when I explained I would not discuss possibly incriminating and or humiliating matters with them if they wrote notes for their system "Totally secure" they said I was worried about nefarious access. Turns out, I should have been more worried than that.

schrectacular 2y ago
Ha, you should have gone to the cybersecurity for a diagnosis!
kcplate 2y ago
So you won’t discuss possibly relevant information to an expert diagnostician that you are relying on for your healthcare? Why go at all then?

lawn 2y ago

How about tackling deadly and preventable diseases instead of the Autism Boogeyman? Measles for example?

vasco 2y ago
[flagged]
tedunangst 2y ago
We were too successful in eradicating measles, so now everybody knows somebody with autism, but nobody can remember measles. or polio.

slicktux 2y ago

Time to switch back to my Casio F91W

totierne2 2y ago

I am in a similar situation. Mental health issue: bipolar as a spectrum not an on/off. It also often has comorbidities. But bipolar is treated first!

totierne2 2y ago
There was a doing something about the slightly ill, or healthy at the edge of the overton window, taking away from the extreme cases getting treatment or attention angle. The sceptic might say there is no clear useful additional treatment or attention! Extreme autism may different. Treated more by Labour rather than chemicals.

captnObvious 2y ago

Another 2015 study examined students in U.S. special education programs between 2000 and 2010. The number of autistic children who enrolled in special education tripled from 93,624 to 419,647. In the same time frame, however, the number of children labeled as having an “intellectual disability” declined from 637,270 to 457,478. The shift of children from one diagnostic category to another explained two thirds of the increase in autism in this population, researchers say. https://www.scientificamerican.com/article/the-real-reason-autism-rates-are-rising/ https://www.scientificamerican.com/article/the-real-reason-a... Some portion of the rise in autism rates may be unrelated to better diagnosis. The likelihood of having an autistic child increases for older parents, and there is a societal trend toward delaying childbirth across developed countries. Children who are born prematurely are also at a heightened risk of autism, and improved neonatal care means many more of these children are surviving to childhood and beyond.

captnObvious 2y ago
As Secretary of Health and Human Services, Kennedy promised “some” of the answers to the causes of autism by September. But his “start from scratch” approach largely ignores research that has already been done. For example, Kennedy told reporters the initiative would look at ultrasounds during pregnancy as a possible risk factor. But a comprehensive multisite study of more than 1,500 pregnancies that found no link between autism and ultrasound use was published as recently as 2023. And scientists definitively ruled out the measles, mumps and rubella (MMR) vaccine as a cause of autism a decade ago (and again in 2019). In addition, the primary study that had suggested a link between the MMR vaccine and autism was found to have falsified data. Despite this, federal officials said in March that the Centers for Disease Control and Prevention will conduct a study to investigate a link between vaccines and autism. The study will be led by a vaccine skeptic who was previously disciplined for practicing medicine without a license. https://www.statnews.com/2025/03/26/rfk-jr-vaccine-study-of-autism-links-led-by-vaccine-critic-scientists-shocked/ https://www.statnews.com/2025/03/26/rfk-jr-vaccine-study-of-...

smallerize 2y ago

Already walked back https://www.statnews.com/2025/04/24/no-new-autism-registry-hhs-says-contradicting-nih-director-jay-bhattacharya-claim/ https://www.statnews.com/2025/04/24/no-new-autism-registry-h...

fragmede 2y ago
> Instead, the official said, HHS will launch a $50 million research effort to understand the causes of autism spectrum disorder and improve treatments. Great that they walked it back, but it's hard not read between the lines and see that as "we're gonna waste a pile of money on the question of if vaccines cause autism".
- Yizahi 2y ago
  He already said that he will have "cause" for autism in September. I'm guessing he has all the research answers ready about "bad vaccines", straight from the Newsmax or whatever he is watching.

apexalpha 2y ago

I don't know but I would NOT register myself like this with this government. What good could ever come from this?

saxonww 2y ago
This is a reason people got upset. Nothing about it appeared to be opt-in.
Yizahi 2y ago
It's not about doing good. It's about mandatory labor camps, he has already announced in some interview. To be clear, for now he says that those would be voluntary. But when ever did an autocrat establish labor camps and not make them a prison for undesirables?

Yizahi 2y ago

There should be a registry of known psychopaths, with mango mussolini topping the chart.