I used to think history like this was safely behind us—locked away in textbooks and black-and-white photographs.

But tonight, as I sat at my dining room table toggling through my autistic son’s red smartwatch settings, trying to figure out how to stop his health data from being shared with people who see him as a problem to solve, I realized we are just living through a new era of the same ignorance.

The federal government wants to collect private medical data from pharmacies, insurers, schools, and wearable tech. All under the banner of “studying autism.” But RFK Jr. doesn’t hide what he believes: that autism is a “preventable disease.” That there’s something broken in our kids. That if he could only gather enough data, he could find someone (or something) to blame.

Smiling boy in a denim jacket and red smartwatch against a dark blue background.

I’m the mother of two autistic sons. Let me say this as clearly as I can: my children are not a disease. They are not a crisis. They are not numbers to be tracked or cases to be managed. They are human beings and they are loved. Full stop.

This isn’t just about privacy. It’s about the heartbreak of watching people talk about your children like they are a problem to solve.

And we’ve seen what happens when governments create registries based on identity—disability, race, religion, gender. We’ve seen how lists like these get used. From Nazi Germany’s eugenics programs and the forced enrollment and torture of Native children in government-run boarding schools, to the more recent surveillance of immigrant and LGBTQ+ communities, we know where this road leads.

I read NeuroTribes by Steve Silberman a few years ago, and what stuck with me most was how kids like mine—autistic children—were studied, labeled, and picked apart under the guise of science. Under the Nazi regime, children with developmental disabilities were placed on registries, institutionalized, and “euthanized”.

Cover of the book "NeuroTribes: The Legacy of Autism and the Future of Neurodiversity" by Steve Silberman, featuring colorful butterflies and birds around green leaves.

And I’m sure it started with records.

I remember reading those chapters and feeling heartbroken…but also relieved. Grateful that this piece of history felt so far away.

But now I see how that same story is still being told—just with different “leaders”, tools, and a modern twist.

The more society pathologizes and demonizes autism, the more families are afraid to seek a diagnosis. They delay assessments. They miss early interventions. They hope their children will "outgrow" it—because the world has taught them that an autism diagnosis means something to hide. Something to fear.

But when we delay support out of fear, we hurt the very children we’re trying to protect.

Robert F. Kennedy Jr. doesn’t understand autism. He doesn’t understand neurodiversity. And he certainly doesn’t understand my kids.

What we need isn’t a registry. What we need isn’t a so-called cure. What we need is a reckoning—with our past, with our biases, and with the systems that continue to fail autistic people.

What we need is a radical kind of acceptance: the kind that recognizes autistic individuals as the vital, brilliant threads in the fabric of our communities that they are. They’ve always been here. They were just pushed into the shadows, and I am hell-bent on keeping them in the sun.

So while RFK Jr. talks about mining data from kids like mine, I spent the day toggling through privacy settings—trying to stop my son’s vitals from silently uploading to the cloud.

That’s the shape this fight takes: one small act of protection at a time. Not because my sons need shielding from who they are—but because they need shielding from what the world still refuses to understand.

I used to think that era—the one where autistic children were catalogued and controlled—was safely behind us.

Now I’m not so sure.

And so I speak. And so I write. Not out of fear, but out of love. Because my sons deserve better than surveillance disguised as science.

Steve Silberman wrote in NeuroTribes:
“The history of autism is not just a tale of sorrow and misunderstanding. It is also a history of resilience, courage, and change.”

THAT is the legacy I choose. And that’s the future I’ll keep fighting for.