Profound Autism Advocacy

We are building a formidable alliance to engage in positive, effective, ongoing federal and state advocacy.

Members of Congress regularly make decisions that affect people with profound autism and their caregivers. Unfortunately, most have never even met someone with profound autism and have little understanding of the struggles and isolation people with profound autism experience.

Profound Autism Alliance’s consistent presence on Capitol Hill will establish our community as one that makes meaningful change occur.

There is a great deal of discussion in the nation's capitol about autism. At Profound Autism Alliance, our ongoing focus is on the health and connection of autistic people who require lifetime, 24/7 care.

Inclusion of this population - those with profound autism - in research is absolutely critical.

We are grateful for the growing recognition of our population in the reauthorization of Autism CARES, subsequent appropriations report language, and other federal and state activities. Every week, we advocate in Washington, D.C., to ensure ongoing recognition and inclusion. Now more than ever, we intend to keep going.

Learn more by downloading our current one-pager below.

Download Our Current Advocacy One-Pager

Senate Appropriations Includes Profound Autism Focus

We are greatly encouraged that the Senate Appropriations Committee included language requiring the inclusion of profound autism in federally funded research. This would not have happened without the thousands of messages you sent over the last year. Stay tuned as we continue to advocate for the use of these five essential words—including those with profound autism—in federal and state legislation and regulation moving forward. Clarity leads to meaningful progress, and this is an excellent step in that direction.

Read The Report Here

Last updated August 4, 2025. Please check back often.

As part of our Profound Autism Advocacy Network:

You will build relationships with other advocates from across the country.
We will provide ongoing training, resources, and support.
You can participate virtually in most instances, which is perfect for caregivers who find it hard to get out of the house.

Join the profound autism advocacy network