"We Had to Keep Pushing": Caregivers' Perspectives on Autism Screening and Referral Practices of Black Children in Primary Care.
Black caregivers meet provider dismissal and bias at every screening step—fix the human side first.
01Research in Context
What this study did
Mae Simcoe et al. (2018) talked with Black caregivers about getting autism screening for their kids.
The team asked what went wrong in the doctor’s office and why referrals were missed.
Parents shared real stories of being dismissed, doubted, or sent away without help.
What they found
Caregivers said doctors often ignored their concerns.
They felt racial bias, custody issues, and community shame slowed the process.
Even when parents pushed hard, the door to diagnosis stayed closed.
How this fits with other research
Klein et al. (2024) later surveyed 400 Black and multiracial families and found the same provider push-back.
McKenzie et al. (2015) saw similar delays, but blamed family distrust and protective culture.
The two views meet in the middle: doctors dismiss, families guard, and the child waits.
Wieckowski et al. (2025) checked records and showed one in four flagged kids—mostly non-White—never got the final diagnosis, proving the caregiver stories are not one-off events.
Why it matters
If you screen or refer, know that Black families may arrive with prior hurt.
Build trust first: listen, repeat their concern back, and schedule the evaluation while they are still in the room.
One small change—believing the parent—can move the child from the 25 % who slip away to the 75 % who get help.
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02At a glance
03Original abstract
Black children with autism spectrum disorder (ASD) are diagnosed later than their White peers, are more likely to be misdiagnosed, and are less likely to receive early intervention services or a developmental evaluation by three years old. Using a grounded theory approach, we solicited the perspectives of parents and other primary caregivers of Black children with ASD on barriers and facilitators to ASD screening and referrals in primary care. A socioeconomically diverse sample of 22 female caregivers participated. Four themes emerged. First, while some caregivers noted their child's primary healthcare providers facilitated a timely ASD diagnosis, other participants reported these providers ignored early concerns about child developmental delays. Second, many participants felt racial bias negatively impacted caregiver-primary healthcare provider interactions. Third, legal/custodial issues slowed caregivers' abilities to follow up on referrals from their primary healthcare providers. Finally, caregivers described denial, shame, and stigma relating to ASD in the Black community as possible factors for delayed follow up to referrals. Differences based on socioeconomic status are discussed. Efforts to improve family-centered, culturally relevant care for all Black caregivers raising children with or at-risk for ASD are needed, particularly for those families experiencing the multiple effects of poverty.
Intellectual and developmental disabilities, 2018 · doi:10.1352/1934-9556-56.5.321