Screening, Diagnosis, and Intervention for Autism: Experiences of Black and Multiracial Families Seeking Care.
Amy S Weitlauf, Alexandra Miceli, Alison Vehorn and 5 others
PMID 36626007WHAT IT FOUND
Black and multiracial parents frequently reported that speech delays were their first concern, yet many faced "wait-and-see" advice from pediatricians.
Families described feeling dismissed or misdiagnosed, highlighting a critical need for providers to trust parental instincts and act early on communication concerns.
Key findings
01Speech concerns were the most frequently reported early developmental issue, noted by 87.5% of parents.
02A significant minority of parents reported providers advised against early diagnosis or issued incorrect diagnoses, delaying appropriate care.
03Parents identified lack of cultural competence and racial bias in providers as barriers to receiving adequate care and timely diagnosis.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was drawn from a genetic research registry, meaning participants were likely more resourced and willing to engage in medical research than the general population. The study was limited to English-speaking families, excluding non-English speakers who may face distinct barriers. Data were retrospective, relying on parental memory of early development and diagnostic interactions. The study did not collect demographic data on parental education or income, which are key factors in access to care.
Declared interests
The authors declared no conflicts of interest. The study was approved by the Institutional Review Board of the coordinating medical center and the Simons Foundation Research Match Team.
The easy way to misread this
Do not assume that because 72% of parents said race did not impact their experience, systemic bias is absent. The qualitative data revealed that 22% of families explicitly described racism or discrimination, and many described provider behaviors (like "wait-and-see") that disproportionately affect Black children, even if the parents did not label the interaction as "racist" on the checkbox question.