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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Publicado en:Virginia Quarterly Review Vol. 102; no. 1; pp. 34 - 76
Autor principal: Johnson, Lynn
Formato: Nonfiction Work
Publicado: Virginia Quarterly Review Spring2026
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Acceso en línea:Ver este registro en EBSCOhost
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        Autism
        Caregivers
        Residential care
        Intellectual disabilities
        Government aid
        Behavior disorders
        Health care industry
        Services for caregivers
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          Autism
          Caregivers
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          Health care industry
          Services for caregivers
          21st century (Literary period)
      ab: 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.
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