Profound Autism Research

benefits of Inclusive Research

People with profound autism consistently experience unique, disabling, and often unseen challenges (i.e., safety, intense behaviors) that require immediate and substantive solutions that will provide support to them and their caregivers.

Research indicates that the proportion of studies that included those with profound autism has decreased significantly over time.^[1]We are helping to fund inclusive research and working with scientists to make sure people with profound autism are included in clinical research.

^[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.

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

Profound Autism Research

benefits of Inclusive Research

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