Screening, Diagnosis, and Intervention for Autism: Experiences of Black and Multiracial Families Seeking Care

J Autism Dev Disord. 2024 Mar;54(3):931-942. doi: 10.1007/s10803-022-05861-z. Epub 2023 Jan 10.

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.

Keywords: Autism; Bias; Diagnosis; Parent; Race.

MeSH terms

  • Autism Spectrum Disorder*
  • Autistic Disorder* / diagnosis
  • Autistic Disorder* / therapy
  • Child
  • Child Development Disorders, Pervasive*
  • Child, Preschool
  • Databases, Factual
  • Humans
  • Retrospective Studies