Help Make A #ProfoundImpact For Profound Autism

Individuals with profound autism require 24/7 care from and adult caregiver their entire lives. Families facing the challenges of profound autism endure isolation and numerous hurdles. From the well-being of individuals and caregivers to the scarcity of supportive programs, the struggle is real. But you can help drive change and make a profound impact.

This your generous contributions and support will help us:

Fuel inclusive research enabling the development of best practices that span across lifespans and regions.
Collaborate with policy makers and grassroots advocates to elevate profound autism as a top priority in legislation and policymaking.

ABOUT US

The Profound Autism Alliance is a groundbreaking organization dedicated to enhancing the well-being of individuals living with profound autism and intellectual disabilities. Launched in 2023 our journey began with Jack Ursitti, an extraordinary young man with profound autism. Just like many others across the country, Jack faced difficulties accessing the care he needed. His severe self-injury in 2022 led to a decline in his health and disconnection from his community. Despite the willingness of various clinicians to help, they lacked the necessary research and expertise. Jack felt lost.

That's where the Profound Autism Alliance stepped in. With insights from the Lancet Commission's work defining profound autism and the Centers for Disease Control's research showing that 1 in 4 autistic individuals have profound autism, our mission became clear:

The Profound Autism Alliance is committed to the recognition of the unique challenges that people with profound autism and intellectual disability experience. Our mission is to improve their health and connection through inclusive research and focused advocacy that will result in meaningful services and supports.

Canva custom creation

OUR WORK

Support and Training for Intense Behaviors: 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. Our ECHO Autism: Intense Behavior program aims to increase clinicians’ ability to assess underlying causes of intense behaviors and deliver evidence-based treatments to stabilize them. Click to learn more.
Advocate for Profound Autism: You play an integral role in getting politicians to understand the issues families with profound autism experience and getting lawmakers motivated to act. You don't need to be an expert on the political process to have a huge impact on policy and your elected officials want to hear from you - their constituent. Register for our advocacy alerts.
Caregivers Connected: Parents and caregivers are often isolated and can feel alone. We've created a space where you connect in a supportive, empowering and confidential online group. Private online events with leading experts provide the rare opportunity to ask questions and gain knowledge in a safe space.
The Dignity Project: Every day, we face the challenge of understanding and supporting those with profound autism. It's a journey filled with moments of struggle, triumph, and deep empathy. Our #DignityProject, is an initiative designed to shine a light on the experiences of those affected by profound autism. Your voice can help educate others and break down barriers. So, whether you're a parent, a caregiver, or a sibling, we invite you to share your journey with us.

Want to learn more? Email us at info@profoundautism.org

GivingTuesday 2023

By Profound Autism Alliance

GivingTuesday 2023

Join us in making a #profoundimpact

Team Leaderboard

Team Members