Black Families' Experiences of Developmental Screening: Review of Well-Child Visits to Inform Enhanced Autism Spectrum Disorder Risk Assessment

Abstract

Objective: 

Black families face barriers to early diagnosis of autism spectrum disorder (ASD). Most work emphasizes systemic delays to diagnosis rather than how existing screening procedures may affect identification. Our goal was to examine pediatric care visits in which screening was most likely to occur to document behaviors of parents and providers.

Methods: 

We examined 18- to 36-month primary care visits in our electronic health record system (n = 99) of thirty-nine 4- and 8-year-old Black children later diagnosed with ASD. We extracted qualitative and quantitative data and engaged in consensus coding. We captured whether formal screening occurred, the content of concerns of parents and providers, and referral patterns for follow-up care or evaluation.

Results: 

Consistent with existing work, we found differences in parent and provider concerns and discrepancies in referral rates. Parents often endorsed concerns about language, sleeping or eating habits, behavior, or motor skills rather than ASD, but specific mention of ASD as a concern increased over time. Referrals for follow-up care were more likely when providers, not parents alone, expressed concerns about patient development.

Conclusion: 

Pediatric providers cannot place the burden on families to raise autism concerns. Although some level of developmental risk was noted at most visits for children later diagnosed with ASD, referrals were only made when providers were also concerned, and most of these were for speech-language evaluation. Ongoing work is necessary to better understand how existing care systems interact with diverse families to inform the creation of inclusive screening practices that mitigate diagnostic delays.