WHAT'S HAPPENING?

🚨 About Stop Disability Surveillance

(Updated April 24, 2025)

There are growing questions about the scope and intent of the proposed registry, and whether it specifically targets autistic individuals. While details are still emerging, what remains clear is this: any system that collects and stores private medical data on disabled populations—especially without informed consent—raises serious ethical and civil rights concerns.

This campaign began in response to widespread public alarm over a news article discussing a potential autism registry. As more information comes to light, our focus has shifted toward demanding transparency, oversight, and community involvement in any data collection initiatives that could impact autistic individuals and the broader disability community.

We will continue to press for answers, and if legal action becomes necessary, we will advocate for an injunction to halt any unjust or harmful policies. Your voice still matters. The most impactful actions you can take right now are:

Contact your representatives to request public clarification and safeguards.
Email the organizations listed below to ask for their public stance and support.

Additionally, the petition below was updated to the bigger petition that is floating around. If you signed once, please sign again.

READ: ASAN Gravely Concerned by Administration’s

Plans for Autistic People’s Medical Data

WHAT YOU CAN DO

1. CONTACT YOUR REPRESENTATIVES

Let your voice be heard. Use the letter below and reach out to your lawmakers.

Find Your Reps →

Letter to representatives:

Subject: Oppose Any Efforts to Create a National Registry of Autistic Children

Dear [Representative/Senator Name],
As a parent of an autistic child/as an autistic person and/or a concerned citizen, I am writing to express my deep alarm over reports that a proposed national registry of autistic people may be under consideration — one that would potentially include their private medical and developmental information.

Such a registry would not only violate the civil liberties and privacy rights of disabled individuals, but it also poses grave risks for surveillance, discrimination, and medical misuse. This approach echoes some of the darkest chapters in history, where disabled people were targeted and institutionalized based on arbitrary data collection and systemic ableism.

I urge you to:

Publicly denounce any such registry
Investigate any plans underway to implement it
Introduce or support legislation that protects disabled children’s privacy rights under HIPAA, ADA, and FERPA

We need leadership that prioritizes protection, not persecution. Autistic and all disabled people deserve dignity, safety, and inclusion — not to be placed on government watchlists.

Sincerely,
[Your Name]
[City, State]
Parent & Advocate

STEP TWO: SIGN THE PETITION

We’re demanding that this dangerous proposal be stopped immediately. Add your voice and share the petition with your networks.

Sign the Petition →

STEP THREE: FILE A FOIA REQUEST

If you believe data collection is already underway, you can file a Freedom of Information Act (FOIA) request to investigate.

Submit a FOIA Request →

STEP FOUR:

These organizations are vital allies in protecting disability rights. Contact them to report concerns or collaborate:

ACLU: Click this link and file a complaint through state website: aclu.org/affiliates.
ASAN (Email Info@AutisticAdovacy.org)
DREDF (Email Info@DREDF.org)
NDRN (Email Info@NDRN.ORG)

Subject Line: Urgent Concern: Proposed National Registry of Autistic Children Violates Privacy and Disability Rights

Dear [ACLU / ASAN Team],

My name is [Your Full Name], and I am a parent of an autistic child/an autistic person and a concerned citizen, deeply alarmed by recent statements from presidential candidate Robert F. Kennedy Jr. proposing a national registry of autistic people. This registry would reportedly contain private medical and developmental information and would be used to track autistic individuals nationwide.

Such a policy is a direct violation of:

HIPAA, which protects medical privacy,
FERPA, which safeguards student educational records,
and the Americans with Disabilities Act (ADA), which guarantees civil rights and protection from discrimination.

Beyond legal violations, this proposal sets a chilling precedent of government surveillance over disabled people — echoing historical abuses that led to the institutionalization and targeting of disabled populations.

We are reaching out to request:

Your official position and public response on this proposed registry.
Legal investigation or preemptive action if any state or federal agency is found collecting such data.
Guidance on mobilizing civil rights protections and educating families of autistic children about their rights in this context.

Families like mine are scared. We need organizations like yours to help us fight back and prevent this from becoming a reality.

Thank you for your ongoing work defending the rights of marginalized communities, including those of us in the disability and neurodivergent communities.