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Profound Autism Alliance Research

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. 

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.

As part of this solution, Profound Autism Alliance is thrilled to fund the newly launched ECHO Autism: Intense Behaviors project. Psychiatrists, neurologists, behavioral pediatricians, and other prescribing physicians will receive specific deidentified case guidance in a convenient, interactive, web-based, small-group format. In the process, they will learn and share best practices for increasing positive outcomes and yielding a higher quality of life for people on the autism spectrum who experience intense behaviors. 

If you are a:

  • Child OR adolescent psychiatrist

  • general psychiatrist

  • other prescribing clinician, including developmental and behavioral pediatricians and neurologists

Please join ECHO Autism: Intense Behavior
Taking place monthly on the 2nd and 4th Friday
Beginning July 26, 2024 through May 23, 2025
11:00 AM - 12:00 PM CT

  • A variety of research studies have shown that 30% to 50% of
    the autism population engages in self-injurious behaviors and
    10% to 58% exhibit aggression towards others.
  • Such behaviors can be physically dangerous to the person exhibiting such intense behaviors and those around them and interfere with learning and access to typical activities.
  • Professional expertise in assessing, diagnosing, and treating intense behavior in people on the spectrum is lacking, with only a few locations in the United States equipped to address this issue in a holistic, evidence-based manner.

ECHO Autism: Intense Behavior aims to increase access to best-practice assessment, diagnosis, and treatment for individuals on the autism spectrum with intense behavior, such as severe emotional dysregulation, self-injurious behaviors, and physical aggression towards others.

 

Register here

Pinning down profound autism for reliable research

Profound Autism Alliance is proud to be a funder of the Delphi project referenceD in this interview.

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. 

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.  

Submit an Interest Form

 

Questions? Please email us at [email protected]