20h ago

RFK Jr.'s autism study to amass medical records of many Americans

www.cbsnews.com

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Medication records from pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers will all be linked together, he said.
The NIH is also now in talks with the Centers for Medicare and Medicaid Services to broaden agreements governing access to their data, Bhattacharya said. In addition, a new disease registry is being launched to track Americans with autism, which will be integrated into the data.
Between 10 and 20 outside groups of researchers will be given grant funding and access to the records to produce Kennedy's autism studies. Bhattacharya did not give details on how they would be chosen, but said their selection would be "run through normal NIH processes."
I don't want to be on a federal autism registry, especially under this regime. How long before RFK announces his "Final Solution" for the "Autism epidemic"?
- Sounds like not being diagnosed is a boon.
  
  Yeah I’m very very glad I’m “just” ADHD. When I was diagnosed it wasn’t possible to be diagnosed as autistic and ADHD. They didn’t fully change that until I was well an adult. I was more ADHD as a kid so, ADHD it was.
  I didn’t realize until I was middle aged that I’m probably level 1 and on the spectrum as well as ADHD.
  So, it’s like you said, maybe a blessing in disguise. I just don’t want all my brethren and all of my sisters who did get diagnosed to face a horrible fate.
  Us neurodivergent need to stick together. Justice for all.
  
  💯
  Here's hoping nerodivergents can band together and rise in the shadows to create systems that are far better than what society currently offers, and outcompete to such a degree that the corporations atrophy and die.
  
  You hope so. For your sake, I hope they leave you alone too.
  
  Thank you thank you. I have a strong feeling they won’t stop with just Autistic people. We will persevere. ❤️
  
  Uh, I hate to be the one to break the news but he’s spoken about not stopping with autism Adderall labor camps
  
  I prefer the term concentration camp.
  
  🤨😅
  
  First they came for the ~~socialists~~ immigrants, and I did not speak out, because I was not an ~~socialist~~ immigrant. <-- WE ARE HERE
  Then they came for the ~~tradeunionists~~ transgendered people, and I did not speak out, because I was not a ~~tradeunionist~~ transgendered person.
  Then they came for the ~~Jews~~ neurodivergent, and I did not speak out—because I was not ~~a Jew~~ neurodivergent.
  Then they came for me—and there was no one left to speak for me.
  —Martin Niemöller
  
  I am fairly certain I fall somewhere on the autistic spectrum. Somewhere at the top end on the mild/high-functioning/low-support-needs/however-you-want-to-describe-it.
  I've never felt a need to pursue a diagnosis, I don't think putting it on paper and making it official has anything to offer me that's worth the aggravation of dealing with extra doctors appointments and such to get diagnosed.
  But I've occasionally considered doing it so that I could potentially participate in any sort of research being done that might possibly help autistic people with higher support needs. That would be worth the aggravation.
  But holy fuck does this administration make me glad I never did.
  I always had a little paranoia that a diagnosis would be more trouble than it's worth beyond just the annoyance of getting diagnosed. That somewhere I'd encounter some bullshit regulation where I'd be considered mentally unfit for something, or be disqualified from a job, or just have people treating me different if they found out.
  But now it's very clear that that's sort of the plan, where a diagnosis would probably be actively used against me instead of just being the result weird edge cases where I might slip through the cracks due to some outdated poorly worded policy.
  
  Have I finally flaked out enough that it's actually helped me?
  
  If you have any history of diagnosis or treatment for ADHD you're fucked if they get this far. These people don't care about the differences. I've taken stimulants for a decade, and considering the only thing between this administration and those records are a call to Walmart? I've got my passport close and am job hunting in Sweden/Germany.
  
  Oh, I've got zero history of diagnosis or treatment for anything. But it's become very apparent I definitely have multiple things lol. I just don't really see doctors and that will someday be a problem.
  So many people I know have been diagnosed and are on treatments though, and the fact that we've already gotten to the stage of disappearing protected classes despite court orders is troubling as hell to put it mildly. I want to believe we can still stop this before the worst happens, but securing a stable life elsewhere is frankly not a bad idea.
- Just as bad if not worse, they'll come up with some bullshit treatment that is at best useless and at worst harmful, and if you don't submit your autistic children to it you're "abusing them".
  
  "People are saying bleach cures autism..."
  
  Well, if you consider death to be the final cure, it sure cures lot of things...

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