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”?
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.
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.
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.
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”.
“… a new disease registry is being launched to track Americans with autism …”
This is unbelievafuckingbly ominous.
It’s exactly the sort of thing these conspiracy assholes claim has been done by others too.
Always. It’s always projection. Complain about their ‘free speech’ being violated, then start deporting people for speaking freely, first chance they get. Act like you care too much about the kids to allow drag queens to read books to them in a public library, then support politicians that want to legalise child marriage and send children to work in the mines. Complain about the ‘feminazis’ acting like all men are rapey, then become the number one fan of Andrew Tate.
At this point, don’t believe a fucking word that any of these mouth breathers have to say. And consider any accusation to be a confession.
Reminder: this is the same guy who wants to send neurodivergent people to work camps to “cure” their “addiction” to lifesaving medication.
This reeks of an excuse to register everyone who’s on the spectrum in order to make that atrocity reality.
UHG. this makes me ill.
Particularly because I do not want to participate in medical studies without my consent. Unfortunately, your doctors have been filing your private health data in for study for a fairly long time.
This isn’t just about medical studies. They don’t need “a new disease registry” “to track Americans with autism” in order to do medical studies…
In addition, a new disease registry is being launched to track Americans with autism, which will be integrated into the data.
It’s for using it to remove undesirables.
RFK is a eugenics asswipe. He’s going to be using it to harm people.
Which, way back when I got into this row with my ex-doctor, it was “I want to maintain control of my data, I don’t want people using it without me knowing or without my consent.”
He laughed saying exactly this would never happen and I was being paranoid.
when a doctor sees you, even if nothing eventful goes in during the appoint, they have to write up a summary of your whole visit, if you ever get a chance to see your medical records, they will have pages and pages of you, even if you had a short visit, said certain symptoms that dont match.
Hmm, Nazis tracking which citizens they consider inferior, while expanding the concentration camps. It might be time to stop them.
