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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Mental health parity matters for profound autism. Because autism is in the DSM, many autism treatments fall under mental health benefits. Families should know their rights when insurers limit ABA or intensive behavioral therapies. More: ow.ly/kKFW50ZkmJA
“All too often, children with profound autism are excluded from research studies because of the many challenges they and their families face." Read more: nyp.org/news/columbia-…
Grateful for Secretary Kennedy's commitment to the autism community and to addressing wandering and elopement—a crisis that ends in tragedy for roughly eight autistic individuals each month based on media-reported cases, likely underestimating the true toll. We look forward to continuing the policy work and advancing implementation of the IACC's recommendations to reduce the risk of death, most often by drowning, among autistic people who wander. Thank you, @SecKennedy, @HHS, and our outstanding National Autism Coordinator, @DianaDiazAZ.
As we prepare to celebrate America's 250th birthday, National Autism Coordinator Diana Diaz-Harrison and I have an important message for the autism community: stay vigilant around water. Many autistic individuals are naturally drawn to water, and drowning remains a leading cause
From @HHSGov Families deserve to enjoy the holiday, make memories, and spend time together safely. By planning ahead and staying aware, we can help prevent tragedies and protect some of our most vulnerable loved ones.
Today marks an important milestone for profound autism research with the publication of a peer-reviewed consensus research definition for profound autism. Learn more about what this means for families, clinicians, researchers, and policymakers: mailchi.mp/profoundautism…
"...the IMPACT network brings together leading academic centres from across the USA, Canada, and the UK to address long-standing gaps in research involving individuals with significant cognitive and language impairments who require lifelong support." ow.ly/Whu250ZgmQn
Our cofounders, Judith and Jack Ursitti, recently had the privilege of presenting on the transition to adulthood for people with profound autism along with the amazing Amy Levitan from the MGH Lurie Autism Center. You can watch the recording here: youtube.com/watch?v=UghRwB…
With so much news about changes in special education oversight, caregiver voices matter. If you care for someone with profound autism, please take 3 minutes to share your experience and help inform our advocacy for meaningful special education services. ow.ly/Z4qx50ZfBep
Happy Father's Day to all the dads out there. We hope that you feel the love today. (And maybe get a nap in, too.)
Families of people with profound autism: We need to hear from you. PAA is gathering real-world experiences about special education. Are students safe, supported and able to access school? Please take and share our survey: surveymonkey.com/r/WNX2W78
Across states, and even towns, access to education can look very different for students with profound autism. We need real family experiences to advocate for meaningful change. Every ZIP code matters. Please take our 3-minute survey: surveymonkey.com/r/WNX2W78
We're proud to see PAA Board member Heather Hegedus and her family featured in Westwood Living. Heather and her husband, Tom, share their journey raising their son, Brooks, and the advocacy it inspired. A heartfelt and important read. Read more: westwood-living.com/issues/june26/
Join us Thursday at 12 p.m. ET for a Lunch and Learn on profound autism, hosted by the Insurance Resource Center for Autism and Behavioral Health. Registration required: profoundautism.org/events/communi… #ProfoundAutism
Fortner had severe autism and was non-verbal, making her completely dependent on her caregivers. Investigators say the abuse she endured was extensive and repeated. ow.ly/Z1EH50ZaJCS
Why should research be a focus when supports and services are in such short supply? At Profound Alliance, we believe supports and services are crucial, and that health and connection matter too. Learn about how research plays a key role: profoundautism.org/advancing-rese…
Happy Washington Wednesday! The House Appropriations Committee passed a bill requiring prevalence tracking of profound autism. This happened because of your advocacy. Help keep it moving in Congress: ow.ly/m5Ra50Z9PFT
From the Washington Post: "My sister is autistic and nonverbal. Here are 3 ways I connect with her. Not everyone communicates through language. Finding alternative ways to bond is simpler than you may think." wapo.st/43Uytq3
People with profound autism need round-the-clock support throughout their lives. That doesn’t make them less. They deserve to be healthy, safe, and connected just like everyone else. Understanding their needs is the first step to meeting them. Learn more: ow.ly/8O9N50Z8VHu
Our Profound Autism Advocacy Network focuses on the part of the autism spectrum that requires lifelong, 24/7 care. Participate a little or a lot. It all matters. Sign up below. 👇 profoundautism.org/advocacy/join-…
Too often, families facing severe self-injury or aggression in profound autism struggle to find help. ECHO Autism: Intense Behaviors trains physicians through case-based learning to provide better, more compassionate care. ow.ly/8kqs50Z6t3n
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