People with profound autism cannot afford to wait to be seen, heard, and supported. We are making a difference right out of the gate by investing in targeted advocacy, inclusive research, and meaningful connections for our community.
Research
There is much work to be done to ensure that research includes and benefits autistic people who require lifetime, 24/7 care. This research isn't always easy, but we believe it is imperative.
From keynotes to posters and panels, profound autism received much-needed attention at the 2024 International Society for Autism Research Annual Meeting.
Learn More About Progress at INSARPinning down profound autism for reliable research
Profound Autism Alliance Medical and Scientific Advisory Committee member Dr. Matt Siegel was recently interviewed in The Transmitter about reaching a consensus regarding the term profound autism.
Clarity is imperative to ensure people with profound autism are included in research and have access to meaningful supports and services.
Advocacy
Without targeted, consistent advocacy for people with profound autism and those who care for them, meaningful services and supports will continue to remain in short supply.
Through our Washington Wednesdays, where we walk the halls of Congress visiting key legislators in Washington D.C., and our Profound Autism Advocacy Network, we are bringing the realities of our community into federal and state conversations.
Caregivers of people with profound autism need understanding, up-to-date information, and real solutions.
The Profound Autism Alliance is recognized as a tax-exempt charitable organization under section 501(c)(3) of the Internal Revenue Code. For reference, our EIN is: 92-0405006.