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.

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


Recently, the Autism CARES Reauthorization Act of 2024 was introduced in Congress. This legislation originated in 2006 and authorizes funding for autism research and programming. 

Profound Autism Alliance supports this reauthorization but strongly advocates for accountability and clarity, particularly related to the allocation of funding specific to people with profound autism who require 24/7 care.  

And it's not just us who is saying this. Our advocacy aligns with the February 2024 GAO Report on Autism Research and Support Services: Federal Interagency Coordination and Monitoring Efforts Could Be Further Strengthened, which states: 

To promote the health and well-being of people with autism, the National Institutes of Health helps coordinate the activities of 18 federal agencies—including research on contributing factors and training on how to screen patients for autism.

NIH has followed several key practices to coordinate agency programs and activities but could do more. For example, NIH could track its progress toward goals to help agencies better allocate resources where they are most needed.

Take Action on Autism CARES 

download OUR Autism CARES One-pager