Racial and Practical Barriers to Diagnostic and Treatment Services for Black Families of Autistic Youth: A Mixed-Method Exploration.
Black caregivers feel the system is biased and stressful, yet still report satisfaction — so probe beyond survey smiles.
01Research in Context
What this study did
Onovbiona et al. (2024) talked to Black caregivers of autistic youth. They asked about every step: getting the diagnosis, finding ABA, and staying in treatment.
The team used mixed methods. Caregivers answered surveys and joined long interviews. They shared real stories of what helped and what hurt.
What they found
Two big themes emerged. First, racism and red tape raised caregiver stress and made them feel the care was poor. Second, even with those scars, most families still said they were 'satisfied' with the services.
The gap is striking. Families feel the system is unfair, yet they value any help they can get.
How this fits with other research
The finding echoes earlier work. Williams et al. (2019) already showed African-American caregivers report more stress than White caregivers and lean on religious coping. Harlee adds the racial-barrier lens to that stress picture.
Čolić et al. (2022) reviewed stories of racism in ABA and called for culturally responsive practice. Harlee supplies fresh caregiver voices that back up the same call.
Montenegro et al. (2022) looked at Latin-American families and found each extra barrier increased felt stigma. Harlee finds a similar barrier-harm link among U.S. Black families, showing the pattern crosses cultures.
Why it matters
You may hear 'satisfied' on a parent survey and think all is well. This study warns you to dig deeper. Ask about traffic, work hours, and past micro-aggressions. Build in flex time, offer virtual parent training, and use intake forms that invite honest talk about race. Small fixes can lower stress even when the larger system is slow to change.
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02At a glance
03Original abstract
The present study explored the role race-related barriers and practical barriers to treatment participation play in treatment effectiveness and satisfaction among Black families with autistic youth using a mixed-method approach. In a sample of Black caregivers with autistic youth (N = 101), multiple regressions were conducted to examine the impact of reported racial and practical barriers on parental stress, treatment effectiveness, and treatment satisfaction. Caregivers provided further narratives on their experience navigating diagnostic and treatment services in qualitative interviews. The study demonstrated that Black caregivers of autistic youth are still encountering several racial and logistical barriers when seeking treatment and diagnostic services for their children. These barriers negatively impact caregiver stress and caregiver perceived treatment quality. Contrary to the barriers and stress experienced by Black caregivers, caregivers are generally satisfied with the treatments they are utilizing and find them helpful. The narratives told by caregivers further elucidate the tumultuous experiences of Black caregivers as they seek diagnostic and treatment services for their children. An experience that may be worsened by family, professional, and systemic barriers, and can be improved by advocacy, acceptance, peer and community support, and increased knowledge. Black families of autistic youth call for increased compassion, support, training, and humility among professionals who serve autistic youth.
Journal of autism and developmental disorders, 2024 · doi:10.1177/21568693221091690