Abstract
Purpose: Despite advances in screening and awareness, Black and multiracial families continue to experience challenges when seeking an autism diagnosis for their children. Methods: We surveyed 400 Black and multiracial families of young children with autism from an existing research database in the United States about their retrospective diagnostic experiences. We gathered quantitative and qualitative data and engaged in iterative coding to understand timing and content of first concerns, families’ experiences of care providers and systems, and the impact of race and culture on accessing care. Results: Families provided examples of early developmental concern and described provider, systemic, and cultural barriers and facilitators to care. Families also provided insight into the influence of culture and made recommendations on how the medical system could better care for Black and multiracial families of children with autism. Conclusions: Results add to a growing body of literature supporting the need for culturally sensitive and accessible care related to developmental monitoring, diagnosis, and follow-up care for Black and multiracial children.
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Funding
This work was conducted with support from the Simons Foundation through a SPARK Research Match Diversity, Equity, and Inclusion Initiative award. It also received supported from the Health Resources and Services Administration (HRSA) and the Autism CARES Act: Innovations in Care Coordination for Children and Youth with Autism Spectrum Disorders and Other Developmental Disabilities Program (H6MMC33236).
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All procedures performed in this study were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. All procedures were approved and overseen by the Simons Foundation, the Western Institutional Review Board, and the Vanderbilt University Medical Center Institutional Review Board.
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Weitlauf, A.S., Miceli, A., Vehorn, A. et al. Screening, Diagnosis, and Intervention for Autism: Experiences of Black and Multiracial Families Seeking Care. J Autism Dev Disord 54, 931–942 (2024). https://doi.org/10.1007/s10803-022-05861-z
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DOI: https://doi.org/10.1007/s10803-022-05861-z