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 theeir 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 resp..ected Medical & Scientific Advisory Board—comprising clinicians and researchers committed to advancing evidence-based understanding and advocacy for profound autism.