— July 23,2020 —
Being the parent of an autistic child is hard enough. Being a single parent to one is even harder. When you are poor, black, and living in an area with few service providers, the job becomes a tangle of infuriating and heartbreaking complications, Georgia Institute of Technology sociologist Jennifer Singh reports in a new paper.
The paper, “Contextualizing the Social and Structural Constraints of Accessing Autism Services Among Single Black Female Caregivers,” details the experiences of 21 metro Atlanta women navigating a complex web of medical and bureaucratic hurdles to get help for their children.
Many were able to get an autism spectrum disorder (ASD) diagnosis for their child through services provided through a community-based autism clinic covered by Medicaid, and even some initial care. Still, many faced enormous hurdles receiving ongoing treatment and support, according to Singh, an associate professor in the School of History and Sociology. Her research investigates autism service inequities at the intersection of race, social class, and gender.
Singh, who is co-founder of an autism disparities working group in Atlanta, said there are initiatives that could help. She is an advocate of a model called promotora de salud, or the community health worker model, that trains lay health educators to provide help and information to underserved communities. Singh and Hong cited a 2017 intervention study from the University of Chicago detailing a pilot study of such a model involving Latino parents. The study found that mothers of autistic children “reported improvements in their understanding of ASD, their child’s strengths and needs, and how to help their child develop and learn, and knowledge of their child’s rights,” according to Singh and Hong.