Thoughts on HHS' Autism registry?

[PsyDr]

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

The autism study is planning to link confidential data "with broad coverage in the U.S. population" in one place for the first time.

www.cbsnews.com

RFK Jr autism study led by man who injected children with anti-puberty drug

David Geier once looked into Lupron, a drug often used to prevent early puberty, for the treatment of autism.

www.newsweek.com

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[WisNeuro]

We should just get everyone with autism a designated numbers, maybe a tattoo, on their arms....

 

[Sanman]

We should just get everyone with autism a designated numbers, maybe a tattoo, on their arms....

We could also bring them to some sort of central area, like a camp...for research purposes.

 

[WisNeuro]

We could also bring to some sort of central area, like a camp...for research purposes.

Maybe house them in RFK Jrs work camps, we could put a fancy slogan on the gates. Maybe something like "work sets you free." Maybe we can translate it into something to look more fancy, maybe Latin or German, "arbeit macht frei." You know, for the branding.

 

[ClinicalABA]

It's an interesting group to target. The thing about ASD is that it doesn't differentially impact poor brown people (in fact it may be more prevalent in families of educated white folks). Autism advocacy groups have successfully taken on insurance companies and got some pretty crazy autism insurance mandates passed (e.g., no monthly/yearly minimums; no age caps; no lifetime caps). Not a group I would choose to mess with.

Ultimately, RFK is- IMHO- being used as a distraction from economic policies that are disastrous for all but the select few at the top. There's definitely the huge racist/fascist component alluded to in other posts above, though.

 

[WisNeuro]

It's an interesting group to target. The thing about ASD is that it doesn't differentially impact poor brown people (in fact it may be more prevalent in families of educated white folks). Autism advocacy groups have successfully taken on insurance companies and got some pretty crazy autism insurance mandates passed (e.g., no monthly/yearly minimums; no age caps; no lifetime caps). Not a group I would choose to mess with.

Ultimately, RFK is- IMHO- being used as a distraction from economic policies that are disastrous for all but the select few at the top. There's definitely the huge racist/fascist component alluded to in other posts above, though.

Well, there are also the handful+ bills in state legislatures literally trying to make mRNA vaccines illegal, and those who possess and administer them considered terrorists. How this is real and not The Onion blows my ****ing mind.

 

[cara susanna]

I'm wondering how it would affect our jobs. Like, who's gonna want to diagnose autism if they think it's gonna lead to someone being put on a registry?

(disclaimer: I do not diagnose autism so this is not a dilemma I would face, just thinking about those that do)

 

[WisNeuro]

"supposedly" the registry would not give people access to PII, but given the utter lack of infosec awareness in this administration, I would not put money on their ability to maintain privacy. And that's just if I thought they were acting in good faith. I'm fairly certain at some point this year, RFK is going to assert that vaccines cause autism, with a report from his hand picked vaccine skeptics and non peer reviewed data.

 

[Therapist4Chnge]

First they start with autism, and then move on to intellectually disabled, and then to other groups....

I did Nazi this coming, but I feel like we've seen this before.

 

[Fan_of_Meehl]

I'm wondering how it would affect our jobs. Like, who's gonna want to diagnose autism if they think it's gonna lead to someone being put on a registry?

(disclaimer: I do not diagnose autism so this is not a dilemma I would face, just thinking about those that do)

It would be interesting to see if the rates of diagnosis and service-connection for PTSD would plummet if they ever implemented a 'PTSD registry' for veterans. Though it may cause a split in the population along interesting lines.

One of the things I remind people of if they ever give me a hard time for actually doing a real evaluation to rule/in out the PTSD diagnosis is that the act of diagnosing such a serious mental disorder is not exactly entirely benign.

To be perfectly clear, I could not be more in opposition to the idea of such a registry. It's just an interesting thought experiment.

 

[Sanman]

It would be interesting to see if the rates of diagnosis and service-connection for PTSD would plummet if they ever implemented a 'PTSD registry' for veterans. Though it may cause a split in the population along interesting lines.

One of the things I remind people of if they ever give me a hard time for actually doing a real evaluation to rule/in out the PTSD diagnosis is that the act of diagnosing such a serious mental disorder is not exactly entirely benign.

To be perfectly clear, I could not be more in opposition to the idea of such a registry. It's just an interesting thought experiment.

Honestly, a lot of those folks are so desperate for a meal (at least the older ones) that they would sign right up for a registry. Perhaps just a bit later in life.

 

[Pragma]

Will these diagnoses be valid?

 

[WisNeuro]

Will these diagnoses be valid?

If they're just data scraping diagnoses in a problem list, overwhelmingly no. Those of us in the VA have already seen how this plays out with terrible research. This is how we get studies reporting ridiculous early dementia diagnoses for people who go on to live interdependently for many decades.

 

[Shiori]

Just at a practical level, it's hard to run of the platform of "government is big, incompetent, and corrupt" and then roll out initiatives through the government. It's also not great to denigrate the people you're wanting to collect data on. There are a handful of states already doing this, and it's already controversial. This was not a great way to roll out an even bigger data collection project. They should probably stop firing the people who know what they're doing.

 

[quickpsych]

Sounds like a violation of privacy laws and consent for disclosure of protected patient information in healthcare.

Why does RFK, Jr think we need a national registry of people with autism? Whose next?

Also on the part about harvesting data off fitness trackers and personal devices, if people have not consented to sharing that data with third parties, this would also be a violation of privacy and data laws.

 

[quickpsych]

"supposedly" the registry would not give people access to PII, but given the utter lack of infosec awareness in this administration, I would not put money on their ability to maintain privacy. And that's just if I thought they were acting in good faith. I'm fairly certain at some point this year, RFK is going to assert that vaccines cause autism, with a report from his hand picked vaccine skeptics and non peer reviewed data.

I mean they let a kid nicknamed "Big Balls" pull social security numbers and other personal information off government servers onto a computer, do we really think they're going to care about protecting patient information?

 

[PsyDr]

Sounds like a violation of privacy laws and consent for disclosure of protected patient information in healthcare.

Why does RFK, Jr think we need a national registry of people with autism? Whose next?

Also on the part about harvesting data off fitness trackers and personal devices, if people have not consented to sharing that data with third parties, this would also be a violation of privacy and data laws.

If they can "prove" vaccines cause autism, they can access the US Vaccine Court, and the US Vaccine Compensation Fund. The latter is growing at a rate faster than inflation. The former awards attorney fees. RFK gets a finder's fee from Wisner-Baum, which has sued vaccine manufacturers.

I'm wondering how it would affect our jobs. Like, who's gonna want to diagnose autism if they think it's gonna lead to someone being put on a registry?

(disclaimer: I do not diagnose autism so this is not a dilemma I would face, just thinking about those that do)

Sadly, it did not stop diagnosis for things like
1) the National Quarantine Act allowed for people with leprosy to be quarantined against their will.
2) State laws allowed similar for Typhoid.

 

[quickpsych]

If they can "prove" vaccines cause autism, they can access the US Vaccine Court, and the US Vaccine Compensation Fund. The latter is growing at a rate faster than inflation. The former awards attorney fees. RFK gets a finder's fee from Wisner-Baum, which has sued vaccine manufacturers.

Sadly, it did not stop diagnosis for things like
1) the National Quarantine Act allowed for people with leprosy to be quarantined against their will.
2) State laws allowed similar for Typhoid.

Yeah except autism isn't contagious. Not saying what was done to patients with leprosy and typhoid was right or just, but you make a good point about how absurd this is.

 

[PsyDr]

Yeah except autism isn't contagious. Not saying what was done to patients with leprosy and typhoid was right or just, but you make a good point about how absurd this is.

Quarantine rules not contained within the Act are subject to executive order, allowing certain diagnoses to be listed as eligible for quarantine.

 

[quickpsych]

Quarantine rules not contained within the Act are subject to executive order, allowing certain diagnoses to be listed as eligible for quarantine.

I looked this Act up, appears it only applies to those coming to the country on foreign nautical/sea faring vessels (perhaps was updated at some point to include other modes of transport) although it's scope is "communicable and transmissible diseases" from "infected foreign ports."

By executive order for "certain diseases" is a bit vague but would imagine they would still have to fit the description of "communicable and transmissible diseases" and hold up to scrutiny under the courts.

Sure I get your point between the lines, they can try to warp these laws with executive orders to fit whatever delusional narrative RFK, Jr is pushing but this is also why it's important to call it out, push back on it, and demand accountability.

Perhaps getting ahead of the problem presently , which is the violation of privacy and patient rights (as well as safety) by them discussing the idea to create a registry of people with certain diagnoses.

RFK, Jr had he had this role during the pandemic probably would have pushed to ban vaccine requirements rather than enforce better containment of COVID in the early pandemic days but the guy has an unhealthy paranoid fixation with claiming imaginary links between vaccines and autism instead 😒

 

[PsyDr]

I looked this Act up, appears it only applies to those coming to the country on foreign nautical/sea faring vessels (perhaps was updated at some point to include other modes of transport) although it's scope is "communicable and transmissible diseases" from "infected foreign ports."

By executive order for "certain diseases" is a bit vague but would imagine they would still have to fit the description of "communicable and transmissible diseases" and hold up to scrutiny under the courts.

Sure I get your point between the lines, they can try to warp these laws with executive orders to fit whatever delusional narrative RFK, Jr is pushing but this is also why it's important to call it out, push back on it, and demand accountability.

Perhaps getting ahead of the problem presently , which is the violation of privacy and patient rights (as well as safety) by them discussing the idea to create a registry of people with certain diagnoses.

RFK, Jr had he had this role during the pandemic probably would have pushed to ban vaccine requirements rather than enforce better containment of COVID in the early pandemic days but the guy has an unhealthy paranoid fixation with claiming imaginary links between vaccines and autism instead 😒

Yeah! Why would anyone want to continue a legal argument that vaccines cause autism, when there is a growing fund in the federal government's possession (i.e., vaccine compensation fund)? Only an ex heroin addict, who couldn’t pass the bar, who has claimed he is legally incompetent so he doesn’t have to pay child support, who makes millions in referral fees by sending vaccine injury claims to plaintiff attorneys would do such a thing!

It’s not like Carpenter v US created the legal precedent to allow the fed to access phone records because companies own the information transmitted on their system. And it’s not like the AMA owns the copyrights to all ICD diagnoses!

How could someone with a financial incentive to promote a legal argument (not ubiquitous legal acceptance) of a disproven concept, when they would get millions of legal referral fees. No matter that the concept was created by a pediatric gastroenterologist, who created a legal right to vaccine alternatives with investors to the tune of approximately £650k, and then used falsified data created at a kids birthday party, to create the argument. Then that dude lost his license due to falsified data, moved to Texas, and left his wife to consort with a 90s supermodel.


(Also: Who goes to the dakotas to buy heroin? You can buy skag on either coast pretty easily.)

 

[WisNeuro]

I looked this Act up, appears it only applies to those coming to the country on foreign nautical/sea faring vessels (perhaps was updated at some point to include other modes of transport) although it's scope is "communicable and transmissible diseases" from "infected foreign ports."

By executive order for "certain diseases" is a bit vague but would imagine they would still have to fit the description of "communicable and transmissible diseases" and hold up to scrutiny under the courts.

Sure I get your point between the lines, they can try to warp these laws with executive orders to fit whatever delusional narrative RFK, Jr is pushing but this is also why it's important to call it out, push back on it, and demand accountability.

Perhaps getting ahead of the problem presently , which is the violation of privacy and patient rights (as well as safety) by them discussing the idea to create a registry of people with certain diagnoses.

RFK, Jr had he had this role during the pandemic probably would have pushed to ban vaccine requirements rather than enforce better containment of COVID in the early pandemic days but the guy has an unhealthy paranoid fixation with claiming imaginary links between vaccines and autism instead 😒

Oh, they don't want to just ban vaccine requirements, they literally want to ban vaccines. There are bills similar to the ones below that would classify mRNA vaccines as weapons, and fine those in possession, in several states' legislatures at the moment.

HF 3219 as introduced - 94th Legislature (2025 - 2026)

 

[PsyDr]

Oh, they don't want to just ban vaccine requirements, they literally want to ban vaccines. There are bills similar to the ones below that would classify mRNA vaccines as weapons, and fine those in possession, in several states' legislatures at the moment.

HF 3219 as introduced - 94th Legislature (2025 - 2026)

because they want access to the vaccine compensation fund.

 

[WisNeuro]

because they want access to the vaccine compensation fund.

This goes far beyond access to the fund. This classifies these vaccines as bioweapons.

 

[smalltownpsych]

Thoughts? My first thought is, they put a conspiracy minded wackadoodle in charge of HHS and now there is a grifter who made his career by preying on the ill informed and anxious in charge of autism research. What next?

 

[cincincyreds]

Maybe house them in RFK Jrs work camps, we could put a fancy slogan on the gates. Maybe something like "work sets you free." Maybe we can translate it into something to look more fancy, maybe Latin or German, "arbeit macht frei." You know, for the branding.

I’m thinking we can name it the Dr. Mengola worm brain camp.