Profound Autism Alliance @ProfoundAutism
Inclusive research and collaborative, targeted advocacy for those with profound autism. linktr.ee/profoundautism Joined August 2022-
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Congrats to @MarkRobisonRGJ for winning Story of the Year at the Nevada Press Association! His reporting on the Sparks family's struggle with profound autism care is inspiring. ow.ly/NZPG50X19wB
The NIH launched the Autism Data Science Initiative (ADSI) to study autism causes with over $50M funding for 13 projects analyzing genomic, clinical, and behavioral data. More info: nih.gov/news-events/ne…
At Profound Autism Alliance, our ongoing focus is on the health and connection of autistic people who require lifetime, 24/7 care. Inclusion of this population - those with profound autism - in research is absolutely critical. Learn more here: profoundautism.org/advocacy/feder…
Building Programs That Work - mailchi.mp/profoundautism…
People with profound autism are routinely excluded from clinical studies. Fortunately, a new and clear research definition for profound autism was introduced at a panel at the 2025 International Society for Autism Research Annual Meeting. Learn more here: ow.ly/ssO450Wvqs6
Join our cofounder next week as part of the Drexel/Bancroft Autism and Adulthood Seminar Series to discuss profound autism and adulthood. Learn more at profoundautism.org/events/communi… #profoundautism #profoundlylovedandrespected
It's Washington Wednesday, and we are on the ground in DC. We are thrilled that the House and Senate included us in their appropriations report. Join our PAA Advocacy Network here: //www.profoundautism.org/advocacy/join-our-profound-autism-advocacy-network/
Join our PAA Meaningful Days Special Interest Group to strategize and share solutions for autistic people who require lifetime, 24/7 care. Sign up here and we'll send you a meeting link: ow.ly/jaof50WU08z #profoundautism #meaningfuldays #compassionclarityprogress
This Sibling Sunday, Emily and Sarah Rakers advocate for their sister, Samantha, to be seen, heard, and supported. Read their thoughts here: profoundautism.org/about-us/blog/… #profoundautism #siblingvoices #profoundlylovedandvalued
People with profound autism are routinely excluded from clinical studies. Fortunately, a new and clear research definition for profound autism was introduced at a panel at the 2025 International Society for Autism Research Annual Meeting. Learn more here: ow.ly/ssO450Wvqs6
💚 Our Sibling Action Network is run by siblings for siblings. 📆 Our next meeting is Tuesday, September 2 at 7PM Eastern. 🔗 Learn more here: ow.ly/zc3b50WP7bC
Every voice matters in the journey toward understanding profound autism. Together, we can amplify the stories of those who often go unheard. Please consider sharing your story today as part of our Dignity Project. profoundautism.org/community/the-…
"This dataset is the largest single collection of information on hospitalized children with autism, many of whom meet the criteria for profound autism." Learn more about this important new resource: 🔗ow.ly/el3p50WiwLj #profoundautism
More often than not, people with profound autism are turned away from day programs, community outings, and even disability-specific events. At Profound Autism Alliance, we are dedicated to changing that. Learn more at profoundautism.org.
Read the latest from one of our favorite authors, Susan Senator: ow.ly/AvSE50WLHCB
Most families with autistic children don’t take vacations—87% according to a 2019 IBCCES survey. But that’s slowly changing. ow.ly/jXMA50WKxOl
People with profound autism are routinely excluded from clinical studies. Fortunately, a new and clear research definition for profound autism was introduced at a panel at the 2025 International Society for Autism Research Annual Meeting. Learn more here: ow.ly/ssO450Wvqs6
People with profound autism deserve to be safe at home and in their communities. Unfortunately, this is frequently not the case. Our Safety Special Interest Group meets on August 19 at 7:30 PM to work towards solutions nationwide. Join us! Learn more here: profoundautism.org/events/communi…
Progress worth celebrating! Read about the advocacy of our Sibling Action Network and inclusion of those with profound autism in senate appropriations language here - mailchi.mp/profoundautism…
Clear is kind. Clarity around populations is critical to progress. Our medical and scientific advisory board member, Matthew Siegel explains why. Read more here: thetransmitter.org/spectrum/the-s…
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