Structural Inequities and Autism Disparities

Background: Disparities in various domains of autism services including age at diagnosis, access to therapeutic interventions, and representation in special educational services exist in the U.S. Although these disparities are evident based on social factors such as race, ethnicity, and social class, there is limited qualitative research that investigates the interrelated social and structural inequities that place children and their families at risk of delayed assessment, diagnosis, and/or services.

Objectives: The objective of this research is to identify structural inequities contributing to autism services from the perspective of underserved people and their families who experience autism service disparities. Specifically, this research aims to better understand the experiences of navigating autism services among single Black women with limited resources and who rely on Medicaid, the U.S. public health insurance program for people with low income.

Methods: This research is based on in-depth interviews (n = 20) with single Black women who rely on Medicaid public health insurance in the U.S. All participants were recruited at a community-based autism clinic in Atlanta, Georgia. Participants were asked to describe their experiences before, during, and after receiving a diagnosis of autism for their child. All interviews were audio recorded, transcribed, and coded using grounded theory methods.

Results: Structural inequalities evident in the data circulate around issues of government systems of care - such as the limits of Medicaid services or bureaucratic mechanisms within state-operated family and child services; quality of education – including under-resourced inner-city and racially divided schools; lack of flexibility in work policies, especially for women; and the boundaries created through public transportation. These structural inequities are also embedded in historical housing and transportation policies in Atlanta, Georgia, which have shaped limitations in public transportation and racial segregation. Based on the experiences of single Black women who are raising a child with autism, these structural inequities do not operate in isolation but work together and are mediated by race, gender, and social class. These intersecting forms of structural inequities contribute to the disparities evident in autism services and disproportionately shape the challenging and frustrating experiences of navigating autism services among single Black caregivers.

Conclusions: The perspectives of navigating autism services for single Black women with limited resources begin to make visible the complexity and embodied experience of raising a child with autism in a structurally unequal society. These alternative experiences have been excluded in the representations of autism disparities thus far and offer important insight to the inextricable link between autism disparities and the structural, historical, and situational contexts of Black women’s lives as shaped by race, social class, and gender. Although this research focused on single Black women, this knowledge can certainly help us imagine experiences of other marginalized groups who confront differential access to autism services. Further, the insight from these women offers important ways forward to address autism disparities, including the development of mobile therapy units or community resource supports for under resourced neighborhoods.