The Profound Autism Alliance was founded in 2023 to add a unique perspective to broader efforts related to autism research and advocacy. This unique perspective was initially inspired and informed by Jack Ursitti, a remarkable young man living with profound autism. Jack, like many of his peers living across the country, struggled to access meaningful care. Specifically, in 2022, his severe self-injury caused ongoing deterioration of his health and loss of connection to his broader community. Clinicians from a variety of specialties worked to find solutions for Jack, but none had the research or expertise to do so. Jack had nowhere to turn.

The Profound Autism Alliance was formed to change this situation for Jack and others like him. With the 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:

The Profound Autism Alliance is committed to the recognition of the unique challenges that people with profound autism and intellectual disability experience. Our mission is to improve their health and connection through inclusive research and focused advocacy that will result in meaningful services and supports.