A systematic review examining caregivers' of color experiences with the diagnostic process of autism spectrum disorder.
Caregivers of color hit systemic, provider, and cultural walls that stretch autism diagnosis longer than for white families.
01Research in Context
What this study did
The team looked at 15 studies about caregivers of color seeking an autism diagnosis for their child.
They wanted to map every hurdle these families face, from the first worry to the final label.
All studies were from the United States, so the review shows one country’s story.
What they found
Three kinds of barriers popped up again and again: systemic, provider, and cultural.
Systemic barriers include long wait lists and insurance hoops.
Provider barriers mean doctors may ignore parent concerns or blame parenting style.
Cultural barriers include stigma in the community and lack of materials in home languages.
How this fits with other research
van 't Hof et al. (2021) show the average age of autism diagnosis is still about five years old worldwide. Sáez-Suanes et al. (2023) explain part of that delay by showing that bias and red tape slow families of color even more.
Ashrafun et al. (2025) found a 3–5 year lag in Bangladesh for similar reasons—stigma, few services, and supernatural beliefs. Together these studies say the delay problem is global, but the fixes must be local.
Klein et al. (2024) counted fewer weekly ABA hours for Black, Hispanic, and low-income kids. Sáez-Suanes et al. (2023) help explain why: if diagnosis is delayed, services start late, so hours stay low.
Why it matters
You can speed up time-to-diagnosis for your clients of color right now. Ask caregivers early about their concerns, write them down in their own words, and fast-track referrals. Keep picture-based parent education sheets in Spanish, Somali, Vietnamese, and other common languages in your clinic. If a family mentions a long wait, call the evaluation center with them; some clinics release slots when a clinician sees joint advocacy. Every month shaved off the path to diagnosis is a month gained for intervention.
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02At a glance
03Original abstract
Children of color are diagnosed with autism later than White children. Caregivers of color are also more likely than White caregivers to report that their child's healthcare providers do not treat them as a partner, spend enough time with them, or respect their culture and values. We wanted to better understand the experiences of caregivers of color with the diagnostic process of autism spectrum disorder, from the time they discuss developmental concerns with their child's primary care provider to when the diagnosis is shared with them. We systematically reviewed the literature and found 15 articles that explored the experiences of caregivers of color. Caregivers of color described that they faced large-scale barriers, such as the cost of appointments, transportation, and long wait lists. They also reported negative experiences with providers, including providers not taking their concerns seriously, making assumptions about caregivers, and delaying referrals for an evaluation. Caregivers stated that their own lack of knowledge of autism spectrum disorder, stigma, their family's thoughts and opinions, and cultural differences between providers and caregivers served as barriers during the diagnostic process. Communication challenges were discussed and included use of medical and technical jargon, a lack of follow-up, language barriers, and difficulty obtaining high-quality interpreters. Some families described providers, other individuals, community networks, and self-advocacy as helpful during the diagnostic process. Large-scale changes are needed, such as increases in the number of providers who are trained in diagnosing Autism. Provider-level changes (e.g. implicit bias training) are also important for improving caregivers' experiences.
Autism : the international journal of research and practice, 2023 · doi:10.1177/13623613221128171