Hill Day 2025: When Autism Speaks Advocated for Power, Not People

29 Jul, 2025

Autism Speaks showed up in D.C. again this year.
Hundreds of matching T-shirts.
Capitol steps photo op.
And a polished pitch to lawmakers about inclusion, support and “lives across the lifespan.”

The centerpiece? A push to reauthorize the Autism CARES Act — a $2 billion package that controls how federal autism dollars are spent through 2029.

They called it advocacy.
But look closely.
Because this wasn’t about autistic people.
It was about the institutions that study, surveil and speak for us — without ever sharing the mic.

What They’re Really Building

Hill Day 2025 wasn’t about services.
It was about scale.

Autism Speaks lobbied for expanded national data collection. More provider training. More behavioral research networks. A deeper research pipeline coordinated by NIH, CDC and HHS. And every bit of it — even promising initiatives like the new AIR-C communication network — will be structured, interpreted and governed by the same medical model that framed us as disordered to begin with.

They’re not building care.
They’re building infrastructure.
Infrastructure that makes us more visible to systems — but not more powerful in them.

Because in the Autism CARES Act, there is no mandate for autistic governance.
No funding tied to participatory research.
No requirement that non-speaking people or high-support autistic adults shape the programs supposedly built for them.

It’s a federal strategy built on autistic bodies.
Without autistic voice.

Data Without Consent. Progress Without Power.

Autism Speaks will tell you this is about hope. About support. About helping families.

But look at the fine print:

• “Expanding national data collection” — with privacy protocols, yes, but no systemic requirement to ensure autistic people shape how that data is interpreted or used.
• “Training providers” — without questioning what they’re being trained to normalize.
• “Supporting families” — by embedding them deeper into a system that still defines success as proximity to neurotypicality.

And while ABA isn’t named, it doesn’t need to be.
The bill still funds the same behavioral pipelines, trains the same compliance-based providers and measures success by the same metric: how close an autistic person can come to “typical.”
The method has changed its label — but not its logic.

This isn’t a retreat from behaviorism. It’s a rebrand.
And we’re still the ones being reshaped.

This Isn’t About Malice. It’s About Maintenance.

The Autism CARES Act isn’t cruel.
It’s careful.
It funds more of the same:

• Surveillance systems that track developmental “risk.”
• Research that prioritizes early detection and behavioral conformity.
• Interagency committees that still don’t center autistic participation.

If this is the future of federal autism policy — then the past never ended.

Because data without narrative justice is just fuel for someone else’s control.
And progress without power sharing isn’t progress.
It’s not reform. It’s reinforcement — of the same machine, with more funding and a new coat of bipartisan paint.

What Autism Speaks Won’t Say

They won’t say that many autistic people reject Applied Behavior Analysis.
They won’t say that “support” without consent often looks like suppression.
They won’t say that non-speaking people deserve communication access, not just “intervention.”
They won’t say that autistic adults are already telling you what we need — and being sidelined for saying it too clearly.

And they definitely won’t say this:
The biggest gaps in autism care aren’t knowledge gaps. They’re power gaps.

What Comes Next

The Autism CARES Act of 2024 is now law — signed and enacted with bipartisan support. Its funding is locked in. Its framework is cemented. And once again, the people it governs had no structural power over how it defines us — only limited representation within systems already built without us.

Millions of federal dollars will flow — into data systems, behavior networks, and clinical pipelines that have never reckoned with their own frameworks.

If you work in policy, and you think this bill is progress — read again.
If you’re a researcher, and you think more funding means more equity — ask who’s interpreting the outcomes.
If you’re a parent, and you think this is what advocacy looks like — ask whether your child’s autonomy is part of the design, or just the justification.

And if you’re autistic?
You already know the answer.

We are not your data.
We are not your case for funding.
We are not the problem you fix with better coordination.

We are the people you keep leaving out of the frame.
And we are not going away.