What happens when the researchers feel studied?
There’s a new unease moving through autism research circles.
Not about prevalence.
Not even about funding.
About access.
Specifically, concern that proposed changes to federal privacy rules — through HHS — might limit researchers’ ability to analyze and link identifiable data across health, education and service systems.
The fear is simple:
“We might not be able to study them the way we’re used to.”
One widely shared reaction came in a recent Psychology Today article, where a group of psychiatrists warned that such reforms could “threaten autism science.”
And suddenly, the discomfort shows.
- The fear of being misunderstood.
- The loss of control over the narrative.
- The sinking feeling that decisions are being made about you, without you.
- The urge to defend your intentions — “You’re misinterpreting our work.”
If that feels unfamiliar, here’s the truth:
This is what autistic people have felt for decades. Most autism researchers have been misrepresenting our lives.
We’ve lived inside systems that define us without asking us.
We’ve read studies that describe our lives in deficit terms, measure our worth by burden scores and reduce our communication to symptom checklists.
We’ve watched millions of dollars go to questions we never asked:
- How early can we detect them?
- How much do they cost?
- How do we make them indistinguishable?
And we’ve been told, again and again, that this is progress.
Some have tried to weaponize this discomfort for their own gain — using critiques of autism science to push anti-vaccine, anti-public health agendas. Let’s be clear: RFK Jr. is not our ally. He doesn’t care about autistic people’s narrative sovereignty. He exploits our existence to undermine science itself. His version of “privacy” is not about protection — it’s about erasing public responsibility.
So when researchers now say that privacy protections “threaten autism science,” we ask:
What kind of science?
Science that depends on unfettered access to our data.
Science that often excludes us from authorship, analysis or even informed consent.
Science that can operate without ever hearing from the people it studies — only measuring us.
That kind of science isn’t being threatened by HHS.
It’s being questioned.
And maybe — just maybe — it’s time.
This isn’t an accusation.
It’s a mirror.
Because when the right to study autistic people is treated as a given, but the right to shape that study isn’t — that’s not science.
That’s asymmetry.
And if researchers now feel the uncertainty of constraint, of oversight, of needing permission — then they are not being censored.
They are, for the first time, feeling what it’s like to be the one studied.
We don’t write this to celebrate that discomfort.
We write it to name its shape.
So that maybe — if you’re willing — you’ll recognize it.
Not as harm.
But as a chance to begin again.
From somewhere truer.
Together.