22 January 2024 | Elaine B. Clarke, James B. McCauley, Amy Lutz, Marina Gotelli, Stephen J. Sheinkopf and Catherine Lord
The article discusses the prevalence of profound autism and its implications for stigma and support. It highlights the challenges faced by individuals with profound autism and their families, including stigma, limited support, and the need for specialized services. The study used a mixed-methods approach to examine the prevalence of profound autism in six samples—three from the United States and three from Western Europe. The results showed that the prevalence of profound autism varied widely across the samples, ranging from 11% to 48%. The study also found that caregivers reported experiencing stigma, with 85% reporting at least one instance of perceived stigma. The article emphasizes the need for better understanding and support for individuals with profound autism and their families, as well as the importance of addressing stigma and ensuring access to appropriate services. The study also notes that the term "profound autism" has been proposed to describe individuals with substantial intellectual disability, no or very limited language, or both, after age eight. The article highlights the challenges faced by families caring for individuals with profound autism, including limited access to services, difficulties finding appropriate housing and activities, and frustration with healthcare experiences. The study concludes that further research is needed to better understand the prevalence of profound autism and to develop effective support systems for this vulnerable group.The article discusses the prevalence of profound autism and its implications for stigma and support. It highlights the challenges faced by individuals with profound autism and their families, including stigma, limited support, and the need for specialized services. The study used a mixed-methods approach to examine the prevalence of profound autism in six samples—three from the United States and three from Western Europe. The results showed that the prevalence of profound autism varied widely across the samples, ranging from 11% to 48%. The study also found that caregivers reported experiencing stigma, with 85% reporting at least one instance of perceived stigma. The article emphasizes the need for better understanding and support for individuals with profound autism and their families, as well as the importance of addressing stigma and ensuring access to appropriate services. The study also notes that the term "profound autism" has been proposed to describe individuals with substantial intellectual disability, no or very limited language, or both, after age eight. The article highlights the challenges faced by families caring for individuals with profound autism, including limited access to services, difficulties finding appropriate housing and activities, and frustration with healthcare experiences. The study concludes that further research is needed to better understand the prevalence of profound autism and to develop effective support systems for this vulnerable group.