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Our Impact

People with profound autism deserve care, dignity, and understanding.

At Profound Autism Alliance, our work centers on the individuals and families too often overlooked — building health, connection, and community through evidence-informed action.

Research

There is much work to be done to ensure that research includes and benefits autistic people who require lifetime, 24/7 care. This research isn't always easy, but we believe it is imperative.

We are currently funding research that will train psychiatrists and neurologists nationwide to effectively serve people with profound autism through the ECHO Autism Intense Behaviors project.
We are working with our Medical and Scientific Advisory Board to further clarify the definition of profound autism for research purposes.
We are working to connect researchers and the profound autism community through
- our ongoing participation at the International Society of Autism Research.
- the ability for researchers to share their studies with our community.

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.

Advocacy

Without targeted, consistent advocacy for people with profound autism and those who care for them, meaningful services and supports will continue to remain in short supply.

Through our Washington Wednesdays, where we walk the halls of Congress visiting key legislators in Washington D.C., and our Profound Autism Advocacy Network, we are bringing the realities of our community into federal and state conversations.

Learn more about our public policy priorities here.
Quickly take action on our current advocacy alerts here.

Caregivers of people with profound autism need understanding, up-to-date information, and real solutions.

Our Caregivers Connected group offers an online forum where caregivers can share their experiences and support one another.
The Profound Autism Summit brings together physicians, clinicians, caregivers, siblings, and other community members to hear the latest information on research, supports, services, and advocacy for individuals with profound autism.

Profound Autism Fact Sheet

Our core values include compassion, clarity, and progress. Download our one page fact sheet to learn more about the term profound autism.

Get the Facts Here

Consensus On A Research Definition

At Profound Autism Alliance, our focus constantly remains on compassion, clarity, and progress for the people we love with profound autism. Now more than ever, clarity is needed in the world of autism research. People with profound autism are routinely excluded from clinical studies. And research that is meant to include our population frequently is inconsistent in defining it. 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 in Seattle. We are grateful to the many researchers who participated in this important consensus project over the last year and extend our thanks to the Autism Science Foundation, which partnered with us to fund this work.

Consensus Statement

ECHO Autism: Intense Behavior aims to increase access to best-practice assessment, diagnosis, and treatment for people with autism and intense behavior, no matter where they live or how old they are. This includes things like severe emotional dysregulation, self-injurious behaviors, and physical aggression towards others.

Professionals receive specific deidentified case guidance in a convenient, interactive, web-based small-group format.

Who Should Participate:

Child and adolescent psychiatrists
General psychiatrists
Other prescribing clinicians, including
- developmental and behavioral pediatricians
- neurologists.

Have a case to submit? Please contact [email protected].

There is a great deal of discussion in the nation's capitol about autism. 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.

We are grateful for the growing recognition of our population in the reauthorization of Autism CARES, subsequent appropriations report language, and other federal and state activities. Every week, we advocate in Washington, D.C., to ensure ongoing recognition and inclusion. Now more than ever, we intend to keep going.

Learn more by downloading our current one-pager below.

Download Our Current Advocacy One-Pager

PURSUING RECOGNITION OF PROFOUND AUTISM NATIONWIDE

People with profound autism should be included in research, services, and supports. Unfortunately, their inclusion has diminished over the years, resulting in fewer and fewer resources for this struggling population.

A simple and effective first step in recognizing them and their unique needs is to familiarize state officials with the new term, profound autism.

One way to accomplish this is through a profound autism day proclamation. We've made it very simple for you to ask your state legislator to issue a profound autism day proclamation at the link below.

Ask Your Legislator For A Proclamation Here

Please take a moment to join in this effort. If enough people make this simple request, we can easily accomplish this in all fifty states. Questions? Please contact us at [email protected].