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ASPartOfMe
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23 Apr 2025, 9:27 pm

Stop the National Autism Registry: Protect Our Children’s Privacy and Human Rights

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The federal government is compiling a national database of autistic individuals — collecting private medical, behavioral, and even biometric data from families across the country. Many of these families have not consented.

This initiative, led by RFK Jr. and supported by the NIH, claims to be for research. But when you strip away the language, you’re left with something chilling:

They are building a list.
A list of people like my children.

A list of autistic individuals — tracked, labeled, and filed under the guise of public health.
This is not support. It is surveillance.

As a parent raising two neurodivergent children, I’ve seen firsthand how exhausting, beautiful, and often isolating this world can be. We navigate therapy schedules, sensory overwhelm, public judgment, inaccessible systems, and a constant fear of how the world will perceive our kids.

Every decision — from school support to medical care — is made with their dignity and future in mind.

So when I hear that our private struggles, our medical choices, and the labels that follow them might be pulled into a government database without our knowledge or consent, it doesn’t just feel invasive, it feels dangerous.

Neurodivergent children already fight to be seen as fully human.

Putting them on a list like this sends the opposite message.

We’ve seen this before — in history, in policy, in silence.

And history tells us this:
You don’t build a registry unless you plan to use it.

We demand:
An immediate halt to all federal autism data aggregation efforts conducted without informed, written consent from individuals or guardians.

A full investigation into how this data is being sourced, shared, and stored.

Federal protections to prevent the creation of any registry targeting individuals with disabilities without public transparency, oversight, and legal safeguards.

This isn’t about politics. This is about rights.

It’s about dignity

And it’s about saying: not our kids. Not like this.

While Autistic adults are overlooked again that is not the most important thing now.


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BTDT
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23 Apr 2025, 10:36 pm

We are seeing this with the outing of transgenders using computer databases.



Jakki
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24 Apr 2025, 1:43 am

This sounds dangerous.....Would certainly not vote for something like this.


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Participant626
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24 Apr 2025, 7:55 am

What are the reasons the administration is giving for making a list of autistic people? How would that help anyone?


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24 Apr 2025, 8:35 am

Transgenders legally changed all their documentation and they used their databases to determine the birth sex to put on passports.



ASPartOfMe
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24 Apr 2025, 8:43 am

Participant626 wrote:
What are the reasons the administration is giving for making a list of autistic people? How would that help anyone?

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


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DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

It is Autism Acceptance Month.

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


kvgdvm
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24 Apr 2025, 1:06 pm

Why does this particular government want to register us? After identifying us as people who will never work or pay taxes?

This reminds me of 1930s Germany when physically or mentally disabled people were labelled 'useless eaters" or "human ballast'. Hundred of thousands were subsequently killed.

Oh, I get it now. They want to register us so that when it's our turn they will know who give the yellow armbands to.


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24 Apr 2025, 1:13 pm

To find those who aren't on their records because they don't work or pay taxes!



Participant626
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24 Apr 2025, 1:38 pm

Does RFK or anyone in the current administration have any track record at all, (even just one instance( in which they created a list of people with a mental diagnosis to help them and it worked?


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24 Apr 2025, 1:41 pm

Remember when people were saying it was an overreaction to compare them to fascists?
Pepperidge Farms remembers.


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Yesterday, 11:29 am

How The Crap Does Stuff Like This Even Get Approved-


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Yesterday, 12:08 pm

TheDandy1 wrote:
How The Crap Does Stuff Like This Even Get Approved-


Because The States are corrupted by special interest groups that represent oligarchs, hyper religious Christianity, far right politics, and worse.


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autisticelders
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Yesterday, 4:00 pm

https://www.usatoday.com/story/news/hea ... 269805007/

concerted effort is paying off, our voices are being heard, I saw RFK in an interview a couple nights ago and he seemed genuinely shocked and dismayed by the huge reaction from us about his statements and his plans. We are having an effect and NIH/Dept Health is starting to pay attention.


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Yesterday, 5:29 pm

kvgdvm wrote:
Why does this particular government want to register us? After identifying us as people who will never work or pay taxes?

This reminds me of 1930s Germany when physically or mentally disabled people were labelled 'useless eaters" or "human ballast'. Hundred of thousands were subsequently killed.

Oh, I get it now. They want to register us so that when it's our turn they will know who give the yellow armbands to.
Remember, if you've met one Autistic person then you've met one Autistic person. We're all different.

I worked my way to two retirements...paying income taxes on both careers. And real estate taxes on our home and sales tax on purchases where they collect sales tax. I was in the military and I went to college.

And I believe many others on the Autism Spectrum have also gone beyond the common stereotype. (And, remember, it is a spectrum disorder—they don't know how many different underlying Autism disorders there are, much less the root cause of each different underlying disorder.)


(Oh. Socializing was awkward and romance scarce. Even I was surprised when my bride and I married.)

I'm opposed to the national registry for Autistics because:
- We're all different and the differences are not yet understood.
<>So it would be reckless to simply call someone "Autistic" and think you understand them.
- And they would probably require our complete medical records.
<>And they have repeatedly shown they cannot protect sensitive info.

Heck. Cure stupidity and rudeness. That would make a better life for all.


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