Black and White caregivers’ experiences with the autism diagnostic process

Families commonly report dissatisfaction with the autism diagnostic process, including long waits and lack of follow-up care. Dissatisfaction may be amplified for Black families, who experience racism in the healthcare system and have less access to culturally responsive care. We assessed open text box responses to a survey about caregivers’ satisfaction with the diagnostic process of autism spectrum disorder. We recruited Black and White caregivers of children with autism who participated in a developmental evaluation in 2018 at a large midwestern hospital. Out of 174 who completed the satisfaction survey, 71 (46.6 %) caregivers gave one or more qualitative responses in open text boxes (17 [34.0 %] Black families, 54 [43.5 %] White families). Researchers analyzed themes using inductive methods for Black and White families. Families who expanded on their Likert responses in open text boxes were less satisfied with the diagnostic process than those who did not. Caregivers described mixed feedback about wait times, their providers, and the information they received. Black families specifically described a power differential between providers and themselves. Though not representative of all families’ experiences, caregivers’ qualitative feedback sheds light on important changes that could be implemented to improve families’ experiences with the diagnostic process. We highlight several recommendations including family navigation, training in culturally responsive care, and shared decision making. • Most Black and White families were satisfied with the autism diagnostic process. • Qualitative open-text responses were mixed compared to positive Likert responses. • Some were dissatisfied with wait times, providers, and the information provided.