Contextualizing the social and structural constraints of accessing autism services among single black female caregivers (2019)

Autism spectrum disorder (ASD) affects 1 in 59 children and represent the fastest growing developmental disorder in the United States. However, disparities in ASD evaluation, diagnosis, and services exist based on social factors such as race, ethnicity, and socioeconomic status. To date, limited qualitative research has been conducted that focuses on the experiences of single Black female caregivers of children with ASD who live in low-income, minority, and underserved communities in the United States. Objective: This study aimed to understand interrelated social and structural factors that place children and their families with limited resources at risk of delayed ASD diagnostic services and limited therapeutic services. Methods: The study design is based on in-depth interviews conducted with single Black female caregivers of children with ASD who rely on state Medicaid health insurance in metro Atlanta, Georgia (N = 21). A grounded theory analysis of the interviews was used to systematically identify themes and multi-level barriers to ASD services. Results: Despite improvements over the past several decades in diagnosing children with ASD, this study identified multiple and interacting social, economic, and residential barriers to accessing ASD services. Two themes were identified that contextualize barriers to ASD services: bureaucratic processes and geographic location of services. These barriers were compounded by the consequences of being a single female parent, including having limited income, employment options, and social capital. Practical recommendations to break the cycle of ASD service disparities are discussed.


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