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Our Public Policy Priorities

Targeted funding for research, supports, and services is necessary to meet our population's unaddressed needs.

PAA is committed to positively impacting the lives of profoundly autistic people and their carers by creating and advancing targeted, informed, and effective research, supports and services (including oversight), and funding.

Our public policy priorities include:


  • Lead efforts with aligned stakeholders to craft and disseminate a clear, consistent, widely accepted definition of Profound Autism for use in research and policy.
  • Lead efforts to guarantee equity and accountability in research participation and funding.
  • Serve as Profound Autism subject matter experts to a wide range of public and private research community stakeholders.

Supports and Services

  • Build access to scalable programs that serve the unique needs of our constituents in the areas of physical and mental health, community connection, professional services, human and physical infrastructure, risk management, and overall well-being.
  • Acting as subject matter experts, establish standards of high-quality care for providers as they serve our constituents, emphasizing effective design and collaboration in programs, robust oversight, transparency, and accountability.


  • Insist on equity in funding the needs of Profoundly Autistic people in all domains of public policy and across the entire lifespan.

Here's How You Can Help Right Now:

Currently, Congress is considering the reauthorization of the Autism CARES Act. As funding for autism research has increased over the past two decades, the portion of it that relates to profound autism has decreased. This disparity has devastating consequences for autistic people who require lifetime, 24/7 care. Unfortunately, most members of Congress are unaware of this.

With your help, we can change that.

Advocate for Inclusion in Autism CARES

Join the Profound Autism Advocacy Network

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

Please ensure you are part of our growing advocacy movement to stay current. Sign up for our advocacy messages, or write to your legislators about your experiences. 

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SHARE YOUR Story with legislators

If you have questions or suggestions, please get in touch with us at [email protected]