Experiences of Family Peer Advocates Supporting Black Families Raising Autistic Children

Abstract

Professionals play an important role in when and how families access autism services. Black families often experience disparate access to autism services compared to White families. Family Peer Advocates (FPAs) are professionals who have personal experience with the diagnostic process, school-based supports, and community-based services, and provide training and support to families. Understanding the experiences of FPAs may help researchers and practitioners better address the needs of Black autistic children and their families. The purpose of this qualitative study was to explore FPAs’ experiences providing autism-related services and resources for Black families with autistic children. We conducted focus groups with 32 FPAs from two agencies in one southeastern state. Three themes emerged from our inductive data analysis regarding FPA experiences: (a) serving multiple roles; (b) working with “zero resources”; and (c) variations in racial responsivity. Given our findings, we call for FPAs to ensure they are considering and responding to the intersecting impact of race on families’ experiences with autism diagnosis and services.