“I Want More People Like Y'all to be Willing to Listen to People Like Us”: A Qualitative Study Exploring Barriers and Facilitators to Care With Autistic Women and Caregivers

Abstract

Recent surveillance data indicate an estimated 1 in 36 children are diagnosed with autism spectrum disorder (ASD). More males than females are diagnosed with ASD and children of color are less likely to be identified with ASD than White children. Given the rising prevalence estimates and persistent gender and racial/ethnic differences in diagnostic rates, it is time that we seek to better understand ASD as it relates to culture, care, and lived experience from the perspective of those we serve. Utilizing qualitative methods, the current research study sought to understand the lived experiences of three autistic women and three women caregivers of autistic children as it relates to the identification, diagnostic, and service delivery processes. In-depth focus group research revealed five major themes ranging from feelings associated with the diagnosis, dissatisfaction with services, the perspective of culture within autism and the family, and how culture should be considered by service providers in treatment planning and implementation. These results are discussed in the context of future research, and implications for autism service providers are provided.