A systematic review examining caregivers' of color experiences with the diagnostic process of autism spectrum disorder.

This review looked at experiences of families from racial and ethnic minority backgrounds getting autism diagnoses for their children. These families face more barriers than White families, including longer wait times, higher costs, and healthcare providers who don't listen to their concerns or respect their culture. Communication problems, language barriers, and stigma also make the process harder. The research shows we need better training for doctors and major changes to make autism diagnosis fairer for all families.

This systematic review examined experiences of caregivers of color during the autism diagnostic process across 15 studies. Findings revealed significant disparities including delayed diagnoses compared to White children and systemic barriers such as cost, transportation, and long wait lists. Caregivers reported negative provider interactions including dismissive attitudes, cultural insensitivity, and delayed referrals. Additional barriers included communication challenges with medical jargon, language barriers, poor interpreter access, caregiver knowledge gaps, stigma, and cultural differences.

Some positive supports were identified including helpful providers, community networks, and self-advocacy. The review highlights the need for both large-scale healthcare system changes and provider-level improvements including implicit bias training.

Healthcare systems need comprehensive reforms including increased provider diversity and training, implicit bias education, improved interpreter services, and reduced structural barriers. Providers should adopt culturally responsive practices, improve communication methods, and ensure equitable access to diagnostic services for families from diverse backgrounds.

Sample size not reported. The review synthesis depends on the quality and methodology of included studies. Specific demographic breakdown of 'caregivers of color' not detailed. Publication bias possible as negative experiences may be more likely to be published.

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.