Partnering With a Purpose: Promoting Equity and Justice for Black Children With Autism Spectrum Disorder.

Abstract

Black children with autism and their families face disparities within clinical care and services, leading to inequitable health outcomes. However, there is limited research centering the voices of the Black autism community in understanding how to address these inequities. In this study, researchers explored the perspectives of caregivers of Black children with autism regarding barriers to equitable care and recommendations for improved services. Community leaders from an autism advocacy group and researchers from a large academic medical center partnered to conduct a Group Level Assessment with 31 Black families of children with autism. During a three-hour research event, participants discussed their experiences within community, school, and clinical services, collectively coded and interpreted the data, and generated action steps to improve services. The findings revealed 6 areas of need regarding the services Black children with autism and their caregivers receive. Black caregivers recommended that systems of care improve access to culturally responsive care, integrate caregiver priorities within their care, and engage in collaborative decision-making with caregivers. Providers should also equip caregivers with an accessible roadmap for navigating their child's services and connect them to care management professionals and resources for mental health support. The findings of this study address a critical gap in the literature by partnering with the Black autism community to identify solutions to address their needs; these recommendations can be used as a foundation for service providers to reduce disparities and improve outcomes for Black children with autism and their families.