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

Abstract

Purpose: Although 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.

Methods: We 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.

Results: Four 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.

Conclusions: This 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.

Keywords: Access to care; autism; barriers to care; disability; health care discrimination; racism.