The study by Clarke et al. (2024) examines the prevalence and stigma associated with profound autism, a condition characterized by significant intellectual disability and limited communication abilities. The research leverages a mixed-methods approach, including prevalence estimates from six samples (three from the United States and three from Western Europe) and qualitative interviews with 20 caregivers of adults with profound autism. Key findings include: 1. **Prevalence of Profound Autism**: - The prevalence of profound autism varied widely across the samples, ranging from 11% to 48%. - There were notable differences in prevalence by gender, race, and ethnicity, with higher proportions of females and racial/ethnic minorities meeting criteria in some samples. 2. **Stigmatization Experiences**: - 85% of caregivers reported at least one instance of perceived stigma, characterized by negative responses or interactions with community members. - Caregivers often faced challenges in finding appropriate housing, activities, and support staff for their adult children. - Health and healthcare experiences were frequently frustrating, with caregivers reporting difficulties in accessing accommodations and professionals with limited awareness of autism. 3. **Community Perceptions and Support Needs**: - Caregivers noted that public conceptions of autism often do not consider behaviors associated with profound autism, leading to a disconnect between the experiences of autistic individuals and neurodiversity advocates. - Efforts to build community support and trusted social networks for their children were reported, but these were often limited. 4. **Discussion**: - The study highlights the need for better understanding and support for individuals with profound autism and their families. - The increasing influence of neurodiversity advocates should not come at the expense of the experiences and needs of those who cannot advocate for themselves. - Future research should focus on the unique needs and stigmatization experiences of profoundly autistic individuals and their families across the life course. The study underscores the importance of addressing the specific challenges faced by this marginalized group and calls for more inclusive and effective support systems.The study by Clarke et al. (2024) examines the prevalence and stigma associated with profound autism, a condition characterized by significant intellectual disability and limited communication abilities. The research leverages a mixed-methods approach, including prevalence estimates from six samples (three from the United States and three from Western Europe) and qualitative interviews with 20 caregivers of adults with profound autism. Key findings include: 1. **Prevalence of Profound Autism**: - The prevalence of profound autism varied widely across the samples, ranging from 11% to 48%. - There were notable differences in prevalence by gender, race, and ethnicity, with higher proportions of females and racial/ethnic minorities meeting criteria in some samples. 2. **Stigmatization Experiences**: - 85% of caregivers reported at least one instance of perceived stigma, characterized by negative responses or interactions with community members. - Caregivers often faced challenges in finding appropriate housing, activities, and support staff for their adult children. - Health and healthcare experiences were frequently frustrating, with caregivers reporting difficulties in accessing accommodations and professionals with limited awareness of autism. 3. **Community Perceptions and Support Needs**: - Caregivers noted that public conceptions of autism often do not consider behaviors associated with profound autism, leading to a disconnect between the experiences of autistic individuals and neurodiversity advocates. - Efforts to build community support and trusted social networks for their children were reported, but these were often limited. 4. **Discussion**: - The study highlights the need for better understanding and support for individuals with profound autism and their families. - The increasing influence of neurodiversity advocates should not come at the expense of the experiences and needs of those who cannot advocate for themselves. - Future research should focus on the unique needs and stigmatization experiences of profoundly autistic individuals and their families across the life course. The study underscores the importance of addressing the specific challenges faced by this marginalized group and calls for more inclusive and effective support systems.