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Our Mission

Individuals with profound autism require 24/7 care their entire lives.

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.

Use of the term profound autism is about clarity, not competition. People with profound autism consistently experience unique, devastating, and often unseen challenges that require solutions, not only for them but for their caregivers.

Research indicates that the proportion of studies that included those with profound autism has decreased significantly over time.[1] The continuing recognition of profound autism will open the doors to more inclusive research. Only then can targeted advocacy increase access to critically needed supports and services for this marginalized population.


[1] Stedman, Amy & Taylor, Briana & Erard, Michael & Peura, Christine & Siegel, Matthew. (2019). Are Children Severely Affected by Autism Spectrum Disorder Underrepresented in Treatment Studies? An Analysis of the Literature. Journal of Autism and Developmental Disorders. 49. 10.1007/s10803-018-3844-y.

We envision a world where individuals with profound autism and their families are empowered, understood, and supported in every aspect of life.

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