The Role of Stigma in the Autism Diagnostic and Intervention Process: Perspectives of Black Families in the Southeastern US

Autism-related stigma may have far-reaching effects on diagnostic timing and prevalence among racial and ethnic minoritized groups, yet the intersection between racial identity, disability, and autism-related stigma remains an understudied area. The goal of this pilot study was to examine the prevalence of autism-related stigma from the perspectives of Black families within the Southeastern US and explore associations between family- and community-level variables that may be impacted by perceived stigma. A series of online surveys were developed in consultation with autism stakeholders. Caregivers of Black autistic youth responded to surveys regarding their family’s diagnostic and intervention experiences and perceptions of stigma towards ASD within the Black community. Caregivers also reported on experiences of perceived stigma subtypes, including enacted, self, and affiliate stigma. Survey responses (N = 47) were evaluated via descriptive analyses, chi-squared tests, and Kendall’s Tau correlations. 91.9% of caregivers reported a perception of autism-related stigma from the Black community. Higher socioeconomic status was associated with increased perceptions of autism-related stigma (τ = 0.36, z = 2.50, p = 0.01). Higher perceived stigma was also associated with having their child be the first in their family to be diagnosed (χ²(3) = 13, p = 0.005). Perceived stigma was not significantly associated with diagnostic timing, service access, or use of peer support networks. Despite the high prevalence of perceived autism-related stigma, caregivers were not deterred from seeking timely diagnoses and access to services for their children. The findings of the present study add to the growing body of literature examining resiliency within Black caregivers and their families.