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.

In FY 2026, Congress directed the National Institutes of Health to ensure autism research includes the entire autism population, including people with profound autism. This marks the first time profound autism has been explicitly included in a bill signed into law by a President. This is meaningful progress. Over time, people with profound autism have become increasingly excluded from research meant to inform care and services. Congress naming profound autism signals recognition that this population has been overlooked — and that inclusion must be intentional.

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Last updated February 7, 2026. Please check back often.

What Comes Next

Appropriations language does not implement itself. Now the responsibility shifts to NIH.

At Profound Autism Alliance, our federal advocacy is focused on:

Ensuring NIH implements congressional language as written, without dilution
Holding NIH accountable for how autism research is designed, funded, and tracked
Maintaining a consistent presence in Washington to translate policy into real-world impact

We work directly with congressional offices and federal agencies to ensure progress leads to lasting change for people with profound autism.

Learn more by downloading our current one-pager below.

Download Our Current Advocacy One-Pager

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