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”?
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used against me instead of just being the result weird edge cases where I might slip through the cracks due to some outdated poorly worded policy.
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”.
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.
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.
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”.