Profound Autism, Visible.

The article focuses on the experiences of families caring for profoundly autistic children in the United States, highlighting the challenges they face amid limited resources and inadequate support systems. It profiles three families—the Cullens, the Pirozzis, and the Siegmans—whose children exhibit...

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Bibliographic Details
Published in:Virginia Quarterly Review Vol. 102; no. 1; pp. 34 - 76
Main Author: Johnson, Lynn
Format: Nonfiction Work
Published: Virginia Quarterly Review Spring2026
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Online Access:View this record in EBSCOhost
Description
Summary:The article focuses on the experiences of families caring for profoundly autistic children in the United States, highlighting the challenges they face amid limited resources and inadequate support systems. It profiles three families—the Cullens, the Pirozzis, and the Siegmans—whose children exhibit severe intellectual disabilities, minimal language, and behaviors such as aggression, self-injury, and elopement. Despite autism’s growing visibility, those with profound autism are marginalized, with political debates often overlooking their urgent need for intensive, lifelong care. The article also examines various care settings, from under-resourced group homes to specialized residential programs like Matthias Academy, emphasizing the critical role of dedicated caregivers and the pressing need for expanded, well-funded services tailored to this population.