Exploring the Experiences of Caregivers of Black Autistic Children: Barriers and Underrepresentation in Care

Approximately 1 in 54 children are diagnosed with autism spectrum disorder (ASD). Research suggests Black children are more likely to be diagnosed later and with more severe ASD than white children and Black families report being more dissatisfied with their child's autism-related care even when adjusting for socioeconomic status. Having an autistic child increases parental stress, and while studies have found support groups to be a helpful for this population, these studies tend be composed of exclusively white participants. To our knowledge, only one other study has examined the experiences of Black families who have an autistic child. Understanding the general experiences of these caregivers, with a special emphasis on coping with the stigma in the Black community is an important area of focus to increase the utilization and satisfaction of their care. Study aims were to: 1) explore the experiences of caregivers of Black autistic children related to obtaining the diagnosis for their child, participating in care at the Center for Autism and Developmental Disabilities (CADD), and coping with the diagnosis to improve future services and 2) understand the barriers to accessing care at CADD to address the underrepresentation of Black children receiving psychological services in order to improve awareness of barriers and develop a plan to mitigate this by improving access to care. Participants included 12 caregivers of Black autistic children. Qualitative analyses were guided by constructivist grounded theory and utilized the constant comparative approach. Guided by study aims, qualitative analysis generated four primary sections: Section I: Pre-Diagnosis Experiences; Section II: Post-Diagnosis Experiences; Section III: Autism in the Black Community; and Section IV: Center for Autism and Developmental Disabilities. Findings describe the experience of caregivers and further explore how their child's race has impacted their experiences. Results suggest caregivers find support in sharing their experiences and problems with their immediate family, with friends, particularly those who also have children with disabilities, and by learning and sharing information about ASD with loved ones. Study results also revealed barriers to treatment, identified treatment facilitators, and include recommendations for program improvement, specifically to increase access and utilization of care.