Experiences of racism and racial disparities in health care among children and youth with autism and their caregivers: a systematic review

PurposeAlthough the health benefits of early diagnosis and therapeutic approaches for children and youth with autism spectrum disorder (ASD), racial disparities persist. This systematic review explored the experiences of racism and racial disparities in health care among children and youth with ASD and their caregivers.MethodsWe conducted a systematic review, drawing on six international databases. Two reviewers screened titles, abstracts, and full texts. Thirty-seven studies met our inclusion criteria and we applied a narrative synthesis to develop themes.ResultsFour themes were identified: (1) experiences and aspects of racism and racial disparities (i.e., language and cultural barriers, poor quality health care interactions, stereotypes and discrimination, family and community stigma, and indirect barriers); (2) racial disparities in health care (i.e., screening and referral, diagnosis, health care services, and care coordination and medication); (3) facilitators to accessing health care services; and (4) recommendations from caregivers.ConclusionsThis review highlights the extensive racial disparities experienced by children with autism. More research is needed to explore youth's perspectives on racism in addition to exploring potential interventions to address racial disparities and improve health equity for youth with ASD. Racial minoritized youth with autism experience many barriers in accessing health care and there is an urgent need to address the systemic racism within our health care systems.Health care leaders and decision-makers should advocate for policy and systems change to enhance equitable access to health services for all youth with disabilities, especially those who belong to minoritized groups.Health care providers should consider engaging in relevant training to provide culturally safe and appropriate services for racially diverse clients with autism.Health care providers and decision-makers should work together to remove barriers to accessing health care for racial minoritized youth with autism.