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.