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.
