Autism Registries, RFK Jr., and Why Our Community Is Speaking Out: A Deep Dive Into History, Fear, and Fighting Back With Compassion

Today we’re going to have the kind of conversation that makes people uncomfortable. But real change doesn’t happen inside comfort zones.

So let’s talk about it: The proposed Autism Registry by RFK Jr. — and why it has so many autistic adults, parents, and advocates alarmed, outraged, and deeply afraid.

What Is RFK Jr. Proposing?

Recently, RFK Jr., who has a long history of controversial views around vaccines and public health, has floated the idea of creating a national Autism Registry.

On the surface, the claim is that the registry would:

• Help collect data

• Track rates of autism

• Improve resource allocation and service planning

To some, this sounds harmless — even helpful. To others, it feels like a flashing red warning sign based in history, discrimination, and dangerous government overreach.

The Pros (Why Some Supporters Say It’s a Good Idea)

Let’s be fair and look at what those in favor of a registry argue:

• Better data means better funding.

  If we know how many autistic individuals exist in the population, governments could (in theory) plan services better: more therapies, educational supports, medical services, and job training.

• Helps with early identification.

  If trends are better tracked, advocates argue, we might be able to catch support needs earlier and intervene more effectively.

• Could boost research funding.

  More detailed population data could lead to increased grants and studies aimed at improving quality of life for autistic individuals.

• Other health conditions already have registries.

  Cancer registries, for example, help track incidence rates and research needs. Some argue autism could benefit from the same.

The Cons (Why So Many Are Screaming “Absolutely Not”)

Now for the very real fears and historical reasons behind the opposition:

• Historical misuse of registries.

  Let’s be clear: government “registries” of marginalized groups have never ended well.

  During the Holocaust, Nazis used disability registries to identify, track, and ultimately euthanize hundreds of thousands of disabled individuals in the Aktion T4 program — a prelude to the Holocaust itself.

• Autism is not a disease to be “tracked” like cancer.

  It’s a neurodevelopmental difference, not a pathology. Treating autistic people like they are a public health emergency dehumanizes an entire group of people.

• Potential for discrimination and weaponization.

  Information collected about autistic individuals could be used to deny services, insurance, jobs, housing — or worse — particularly when leadership changes or political tides shift.

• Consent and autonomy.

  Will autistic individuals (especially children) have a say in being listed? Who controls that data? Who profits from it?

• Framing autism as a “problem to be solved.”

  This registry echoes dangerous ableist narratives that autism is a societal burden to manage — not a diverse, valuable part of human existence.

Why Parents and Autistic Adults Are Terrified (And Rightfully So)

For many of us — parents, advocates, autistic adults — this isn’t just politics. It’s life and death history.

It’s the gut-punch knowledge that disabled bodies have been “tracked” before, not to help them — but to harm them.

It’s remembering that marginalized communities are always the first sacrificed when political climates change.

It’s understanding that once you reduce an entire group of people to a number on a government spreadsheet, you make it easier to ignore their humanity.

A Compassionate Take (Because Yes, We Still Need Services)

Is our system failing autistic individuals? Yes. Absolutely.

We desperately need:

• Better access to healthcare, education, housing, and employment

• More support for parents, siblings, and caregivers

• More visibility for non-speaking autistics and those with higher support needs

• A dismantling of systemic ableism across every institution

But tracking bodies isn’t the answer.

We need investment without invasion. Support without surveillance. Compassion without control.

Empowerment: How We Fight Back Without Losing Ourselves

Here’s the deal: We can be angry, afraid, frustrated — and still act from love.

We can:

• Raise our voices. Write, call, email your representatives. Share your story. Public opinion matters.

• Support autistic-led organizations. Always center the voices of actually autistic individuals, not just “autism awareness” groups.

• Educate others. Compassionately explain why this history matters — and why “good intentions” are not enough to outweigh dangerous risks.

• Stay politically engaged. Especially at local levels where policy is often decided long before it hits the national news.

• Model autonomy and dignity. Teach your children and communities that autistic people are not burdens to be tracked — they are human beings to be respected.

Final Thoughts: It’s Not About Fear. It’s About Memory — and Hope.

Being against an autism registry isn’t about paranoia. It’s about memory. It’s about protection. It’s about saying: “Not again. Not ever again.”

We can acknowledge the desperate need for better services without giving the government permission to label and track our kids like they’re problems to be solved.

We can be kind.We can be fierce.We can be the guardians of a future that respects the humanity of every person — no matter how their brain works.

And we can — and must — fight back with truth, courage, and love.

Because history demands nothing less. And our kids deserve nothing less.