Research

There is much work to be done to ensure that research includes and benefits autistic people who require lifetime, 24/7 care. This research isn't always easy, but we believe it is imperative. 

• We are currently funding research that will train psychiatrists and neurologists nationwide to effectively serve people with profound autism through the ECHO Autism Intense Behaviors project.
• We are working with our Medical and Scientific Advisory Board to further clarify the definition of profound autism for research purposes.
• We are working to connect researchers and the profound autism community through
  • our ongoing participation at the International Society of Autism Research.
  • the ability for researchers to share their studies with our community.

Pinning down profound autism for reliable research

Profound Autism Alliance is proud to be a funder of the Delphi project referenceD in this interview.

Profound Autism Alliance Medical and Scientific Advisory Committee member Dr. Matt Siegel was recently interviewed in The Transmitter about reaching a consensus regarding the term profound autism.

Clarity is imperative to ensure people with profound autism are included in research and have access to meaningful supports and services. 

Advocacy

Without targeted, consistent advocacy for people with profound autism and those who care for them, meaningful services and supports will continue to remain in short supply.

Through our Washington Wednesdays, where we walk the halls of Congress visiting key legislators in Washington D.C., and our Profound Autism Advocacy Network, we are bringing the realities of our community into federal and state conversations.

• Learn more about our public policy priorities here.
• Quickly take action on our current advocacy alerts here.

Caregivers of people with profound autism need understanding, up-to-date information, and real solutions. 

• Our Caregivers Connected group provides an online forum for caregivers to share experiences and support each other.
• The 2024 Profound Autism Summit, for which we proudly serve as the premier sponsor, will bring together more than 500 participants from 34 states and counting to hear the latest information on profound autism research, supports, services, and advocacy.