Profound Autism Alliance Leadership

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

OUR HISTORY

Founded in 2023, our organization brings a unique perspective to autism research and advocacy. Our founding was inspired, and our work is informed by Jack Ursitti, a remarkable young man living with profound autism who, like many of his peers across the country, struggled to access meaningful care.

Jack had nowhere to turn.

The Profound Autism Alliance was formed to change this situation for Jack and others like him. With clarity provided through the work of the Lancet Commission, which provided an administrative definition of profound autism, and with research done by the Centers for Disease Control, which found that 1 in 4 autistic people have profound autism, our mission became clear: by building an alliance of professionals, researchers, advocates and families that support inclusive research and focused legislative advocacy, we can and will change the future for people with profound autism and those who love them.