O3223: Context: Intersectionality of Race and Autism on the Diagnostic Journeys of Black Families

Background: Black families experience various challenges in their Autism Spectrum Disorder (ASD) diagnostic journeys. More research is needed on the impact of the intersectionality of race and ethnicity on Black families’ ability to access autism related care, including screening, diagnosis, and intervention. Our objective in this study was to further analyze an existing data set to understand families’ reports of race impacting care related to child diagnostic age (Early Diagnosis: ≤ 36 months or Late Diagnosis: >36 months).

Methods: Our previous study surveyed 400 Black and Multiracial families of young children with ASD from an existing research database in the United States about their retrospective diagnostic experiences. The quantitative and qualitative survey data obtained then underwent an iterative coding process (Weitlauf et al., 2023). In this study, the coded data of the previous study is stratified according to timing of diagnosis, and whether the parent answered “yes” when asked whether race or ethnicity impacted their ASD diagnostic journey. We then compared the groups on perceived impact and explored qualitative themes.

Results: A total of 395 parents survey responses were assessed (Early Diagnosis [ED] n=236, Late Diagnosis [LD] n=159). Chi Square analyses were used to explore differences between groups. All parents shared they had developmental concerns at or below the age of 36 months. When asked if race or ethnicity impacted their access to diagnostic services, 19.07% (n=45) of ED and 40.88% (n=65) of LD answered “Yes” (p value= 0.001, see Figure 1). When asked if cultural differences between them and professionals affected their diagnostic process, 12.88% (n=29) of ED and 22.64% (n=36) of LD answered “Yes” (p value < 0.01). When asked to rate how much race and ethnicity impacted their diagnostic journey on a scale of 1-10 (1 = least impact, 10 = most impact), both groups had similar ratings (ED mean=6.51, LD mean=7.26; overall mean 6.88). Across the entire sample, 87 of the 110 parents (79.09%) who reported race impacted their care provided additional qualitative data, with themes related to topics such as providers’ implicit biases informed by stereotypes of Black parents and children, feeling their concerns were not taken seriously, and challenges receiving intervention services after diagnosis.

Conclusion: When developing efforts to address disparities in the ASD diagnosis experience of Black families, it is paramount that such efforts are informed by the experiences of Black families. The data from our survey asking Black families about their diagnosis experiences highlights Black families’ perception of the role healthcare providers and the healthcare system as a whole play in ASD disparities. Our findings suggest a need to further study Black children and families’ interactions with the health care system, to effectively address ASD disparities.