Who sits on the IACC determines whose autism counts

The Interagency Autism Coordinating Committee is supposed to advise HHS and help set the federal research map. Seats on that committee are therefore policy, not ceremony.

Autistic self-advocates belong in the room. So do scientists. So do parents and caregivers of people who do not speak, who have self-injury or epilepsy, or who will need 24-hour support. When any of those voices is missing, the strategic plan tilts toward the lives that are easiest to describe in a hearing room.

APRC’s position is additive, not subtractive: expand representation, publish conflict-of-interest disclosures, and require the plan to include measurable goals for people with profound autism. A committee that cannot say the word “profound” will not fund the work those families need.

Tell HHS and Congress that representation is a design requirement →