When $50 Million Buys Silence
This month, the NIH launched a new $50 million initiative for autism research — promising a fast-tracked application process, access to large public and private datasets, and a sweeping investigation into both causes and services.
On the surface, that sounds promising. But behind the scenes, many researchers are voicing concern: the process is opaque. The reviewers are unnamed. And the structure seems built to concentrate power at the top — not invite collaboration from below.
As STAT News reports, even respected scientists are uneasy. David Amaral — a longtime NIH grantee — said flatly: “You could generate data, but the conclusions, the interpretations of the data, may not necessarily be your own.”
That’s not a scientific process. That’s a political one.
Whose Direction, Whose Voice?
The NIH says this initiative will improve lives. But here’s the pattern autistic people have seen — over and over again: big money, closed doors, and studies about us without us. Research shaped by institutional agendas, not lived experience. Outcomes interpreted by people with no stake in the consequences.
The silence around who gets to lead — and who doesn’t — isn’t neutral. It’s structural exclusion by design.
We Know What Happens Next
When autism research is driven from the top down, the same story gets told: a story of risk, burden, prevention. We get framed as problems. Data gets weaponized. And the services we need? They shrink into “compliance-based interventions” built to normalize, not support.
This is how you get a $50 million program that speaks the language of care — but erases the people it claims to care about.
If You Want Trust, Build It
There’s still time. NIH could commit to transparency. Could center autistic researchers. Could treat us not as variables, but as partners. But that requires more than funding. It requires accountability, shared authorship, and the courage to admit who’s been excluded — and why.
If this initiative is truly for us, then invite us in. Not as subjects. As co-authors of our future.