Profound Autism Alliance

Individual Profound Autism Criteria and Unmet Needs Among Autistic Adolescents and Their Caregivers jamanetwork.com/journals/jamap… Typically, quite a bit of unmnet needs. And unmet needs for both person and caregivers (including siblings too).

We kick off our next round of ECHO Autism Intense Behavior this week. 150+ clinicians have already participated—building real skills to better support individuals with profound autism and intense behaviors. Physicians: there’s still time to join. profoundautism.org/inclusive-rese…

CNV x BMI x Age interactions on height have potential CLINICAL implications. Many of these CNVs contribute to neurodevelopmental disorders. Our results suggest that genetic effects on development are modifiable through metabolic and hormonal pathways.

From the article on INSAR 2026: Profound autism received much attention in several dedicated sessions. Speakers emphasized that people who fall under the umbrella of profound autism are critically underrepresented in both basic and clinical research. ow.ly/lQUZ50YSlLj

We don't tell enough happy stories here so: Thank you so much to Olentangy High School for setting up the "signing day" station for our son Judson. He has profound autism, and will attend Stewart Home & School in the fall, and likely for the rest of his life. 1/

Across IACC comments, a consistent theme emerges: families facing high support needs and medical complexity are under significant strain and struggling to cope. Page 140 IACC Comments April 2026 I am the mother of a child with profound autism, severe disability, and complex medical challenges including epilepsy and a rare genetic disorder. When autism policy is discussed in the United States, the needs of families like mine are often lost inside a very broad spectrum conversation. The reality for children like my son is very different from the public narrative of autism. My son is nine years old and non-speaking. He requires constant supervision for safety. He experiences dangerous behaviors, severe sensory dysregulation, and medical complications that impact his ability to attend school consistently. We are not navigating typical developmental delays. We are managing a lifelong disability that requires specialized care, crisis support, and long-term planning. The system families like mine encounter is fragmented and insufficient. There is a severe shortage of crisis services for individuals with dangerous behaviors. Many families are left to manage extreme behavioral crises alone in their homes without trained support. Respite care is nearly impossible to access. Caregiver burnout is widespread because parents are expected to function as full-time nurses, therapists, crisis responders, and advocates simultaneously. Housing and long-term care options for individuals with profound autism are critically limited. Parents across the country are terrified of what will happen to our children when we are no longer here to protect them. Schools are also struggling to support students with profound needs. Safety, medical complexity, and behavioral crises often make consistent attendance difficult, yet families are still judged through traditional attendance expectations that do not reflect the realities of severe disability. Families need more than awareness. We need systems built for the level of care our children actually require.

"As we age as parents, the day will come when he is in the world without myself and my husband, who are the ones who look out for his best interest, and it's terrifying," said Julia Schiavo, stepmother to 21-year-old Spencer Schiavo, who has profound autism and needs care 24/7. >> cbsloc.al/4eVW5Bp

The Interagency Autism Coordinating Committee outlined a set of federal policy and care recommendations in an April 28 letter to HHS Secretary Robert F. Kennedy Jr. Read more here: beckersbehavioralhealth.com/behavioral-hea…

The meeting link for today's IACC meeting can be found here: ow.ly/jCk650YR30f

Reminder: The newly seated Interagency Autism Coordinating Committee meets for the first time TODAY, Tuesday, April 28, at 9:00 AM. For the first time ever, profound autism is on the agenda. Learn more and read our public comment: ow.ly/yRCY50YPH3x

Connecticut Advocates: The legislative session is coming to a close, and the next few days are critical for the profound autism community. Join the PAA CT Advocacy Group this Tuesday, April 28 at 7:30 PM ET to stay informed and take action. Learn more: ow.ly/J15I50YQAkt

The newly seated Interagency Autism Coordinating Committee meets for the first time on Tuesday, April 28 at 9:00 AM. For the first time ever, profound autism is on the agenda. Learn more and read our public comment: ow.ly/VVWU50YPH1Z

Where do adults with profound autism go after school ends? This panel shares real solutions from 3 different states, built with love, innovation, and resilience. April 17 at 2:45 PM Eastern | 2026 Profound Autism Summit | Boston or Online Register: ow.ly/M0pl50YJ4bv

“This new report confirms what we have long known. Family caregivers are holding up a system that Americans nationwide rely on every day, but at a cost,” said Dr. Myechia Minter-Jordan, CEO of AARP. “Behind these numbers are people paying an emotional toll and a financial one. Caregivers are stretching their finances, sacrificing their own well-being, and too often, they are doing it alone.” disabilityscoop.com/2026/04/13/fam…

@katiewr31413491 We are covering everything from cannabis to catatonia with a wide variety of presenters. Sylvia Fogel, the new IACC chair, is joining us. We also have many caregiver perspectives, including siblings, and advocacy focused on where our loved ones can live once we are gone.

@ProfoundAutism Are their any GIs? PANDAS people? Regression? I worry whenever I see a lot of PhDs . Psychologists not what we need. Like you, I’m sure, I want people to understand this is often a medical condition.

A big moment for the profound autism community. HHS and NIH leaders, and Governor Maura Healey, will be at the Profound Autism Summit this week. IACC comments are due April 14. Join in a little or a lot. Please just do what you can. Learn more : ow.ly/Mj6050YIs0S

The full picture of profound autism care is complex, and it matters. This summit covers it all: medical, research, communication, behavior, housing, safety, and innovation. 📍 April 16–17, Boston 👉 Join us: profoundautism.org/events/profoun…

April 14 is the deadline for IACC public comments for the upcoming meeting (4/28). Please email comments to IACCPublicInquiries@mail.nih.gov We need your voice. Consider sharing your comment here as well so we can have real-time input from autism stakeholders. federalregister.gov/documents/2026…