Advocacy

For families, caregivers, and professionals supporting people with Profound Autism, advocacy means speaking up, standing together, and making sure every voice is heard, even when the person themselves cannot speak. It’s about securing the services, rights, and respect that lead to a full and dignified life.

Profound Autism Alliance: Champions for the Profoundly Autistic Community

Profound Autism Alliance is dedicated to elevating the voices and needs of individuals with Profound Autism and their caregivers with targeted, collaborative advocacy.

The Alliance actively works on state and federal advocacy efforts, calling for improved recognition and support within key legislation like the Autism CARES Act, noting that while individuals with profound autism represent about 26% of the autistic population, they participate in only 6% of autism research studies. They use this data to push for more inclusive policies and funding.

They’ve established mechanisms for community involvement through initiatives like the Profound Autism Advocacy Network, state and federal action tools, and clear public policy priorities. These platforms enable families and allies to engage directly with legislators and advocate for systemic changes.

Through programs such as the Dignity Project, the Alliance brings forward the often-overlooked stories of individuals with profound autism and their families, doing so with deep respect and a commitment to preserving dignity. They also created the Sibling Action Network, offering a unique, sibling-created space for connection and resources.

Behind these efforts is a leadership team that includes cofounders Judith and Amy Ursitti, joined by a dedicated board and a respected Medical & Scientific Advisory Board, comprising clinicians and researchers committed to advancing evidence-based understanding and advocacy for profound autism.