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The Research We Fund

There is much work to be done to ensure that research is being done that includes and benefits autistic people who require lifetime, 24/7 care.

This research isn't always easy, but we believe it is imperative. 

Profound Autism Alliance Funds ECHO Autism Program to Improve Care for Those with Intense Behaviors

October 30, 2023 – The Profound Autism Alliance (P.A.A.) is proud to announce the launch of its first project, ECHO Autism: Intense Behavior. 

Funded by the Profound Autism Alliance, with support from the Autism Science Foundation, ECHO Autism: Intense Behavior aims to increase clinicians' ability to assess underlying causes of intense behaviors and deliver evidence-based treatments to stabilize them.
 
Painful and dangerous behaviors like self-injury or aggression affect 30-50% of people with autism, but few experts or resources are available to address them. Additionally, most clinical research excludes people with profound autism, who likely experience intensive behaviors at an even greater rate.
 
"ECHO Autism: Intense Behavior is the first project of its kind to specifically focus on clinician development, increasing knowledge and self-efficacy in delivering best-practice assessment, diagnosis, and treatment for people with intense behaviors," said Kristin Sohl, MD, F.A.A.P., University of Missouri Health Care pediatrician and founder of ECHO Autism. "There are extensive waitlists for the few multidisciplinary expert teams specializing in the area. Currently, expertise in this area is scarce, which further magnifies socio-economic and geographic disparities." Under Dr. Sohl's leadership, the ECHO Autism Communities Coordinating Center at the University of Missouri will oversee the project.
 
"Many people with profound autism and their caregivers are living in crisis, boarding in emergency rooms and languishing on wait lists. They need compassionate and meaningful care for behaviors that can be painful and debilitating. At Profound Autism Alliance, we are determined to find solutions to remedy this and to empower physicians and their teams to help in the here and now. We are grateful to the Autism Science Foundation and to Dr. Kristin Sohl for investing their resources towards finding solutions for people with profound autism who are struggling," said Judith Ursitti, Co-founder & President of Profound Autism Alliance.  

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Many people with profound autism and their caregivers are living in crisis, boarding in emergency rooms and languishing on wait lists.
They need compassionate and meaningful care for behaviors that can be painful and debilitating.
At Profound Autism Alliance, we are determined to find solutions to remedy this and to empower physicians and their teams to help in the here and now.

Questions? Please email us at [email protected]