Autism experts and advocates expressed alarm after the Department of Health and Human Services said Wednesday it intends to create a database of enrolled Medicare and Medicaid patients to support a study aimed at identifying the “root causes” of autism.

The new project to study disparities in autism diagnosis using Medicare and Medicaid records — but without any privacy protections, any mechanisms to prompt consent for sharing and using personal data and - importantly - without any input from the very community it claims to serve.

Zoe Gross, director of advocacy for the Autistic Self Advocacy Network, said it clearly to NBC News:

“None of us have been consulted on this.”

This is a serious mistake. Under past administrations — both Democratic and Republican — autism advocates and organizations were meaningfully involved in shaping major federal autism initiatives. That collaboration is missing here.

Worse, the new project still lacks clarity and transparency, even after backlash forced HHS to walk back a national registry plan just weeks ago.

Autistic people are not research subjects to be studied in silence. They must be at the table when the government makes decisions that affect them.

We call on HHS and Secretary Robert F. Kennedy Jr. to immediately bring autism experts and advocates into the design and oversight of the new autism research initiative.

Provide full transparency about the project’s goals, data sources, privacy protections, and outcomes.

Commit to meaningful, sustained collaboration with the autism community on all future federal efforts.

This is not just about good policy — it’s about dignity, representation, and trust.