I am so thankful for the work of Profound Autism Alliance. As the mother of a 26 yr old son with profound autism, I have been struggling - I was feeling as if there was no longer a voice for my son in the broader autism community. While I support the efforts of those that can advocate for themselves, I am concerned that their voices are drowning out those who can not speak for themselves - those that require 24/7 care for a lifetime. Parents who were once seen a fierce advocates for their children are now accused of being unaccepting or worse enabling because we speak for our kids. If my son could speak for himself, I would love it but he can not. Until he can, Profound Autism Alliance provides a judgement free forum where we can openly and honestly speak about our daily challenges, celebrate successes and share resources. I appreciate the way that PAA is advocating for those with profound autism and am grateful for this organization.
The Profound Autism Alliance launched in 2023 in response to the unique and pressing challenges faced by those living with profound autism. These individuals require 24/7 care, have a severe to profound intellectual disability, and have minimal or no language. They often face exclusion from disability programs, and there is a scarcity of appropriate educational interventions, adult programs, and supported housing tailored to their needs. The organization is focused on inclusive research and targeted advocacy resulting in meaningful services and supports.