Study Sheds Light on Disparities in Autism Services in Georgia
By Michael Pearson
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.
“What we found is that for these women, Medicaid served as an access point to get an evaluation, a diagnosis, and service referrals for their children. But it also became a barrier to receiving ongoing services, especially for women who live in areas of Atlanta with few providers who offer therapies needed for children with autism,” said Singh.
Alice Hong, who graduated with a Master of Science in History and Sociology of Technology and Science in 2019, co-authored the paper through a mentorship program designed to train the next generation of scholars on issues of health equity for children.
Three complicating factors
Singh found three major factors contributed to the difficulties faced by the women in her study: red tape, geography, and a web of compounding factors that complicate already difficult circumstances.
For instance, Singh’s paper with Hong relates the story of one family, a mother and her two children. It took a year from the time she received a referral to an autism clinic to receive a diagnosis for her older son. That child received three months of beneficial occupational therapy after being diagnosed, but then had to abruptly stop when Medicaid coverage for the service ended. At the same time, the boy’s mother struggled to locate a speech therapist near her south Fulton County home while also dealing with developmental delays in her younger son and difficulties finding him specialists who would accept Medicaid.
“It was clear from the stories told by these mothers and grandmothers … that difficulties in accessing services for their children can be contextualized by the complex and often confusing bureaucracy of acquiring ASD services in Georgia,” Singh and Hong wrote in the paper. “Many caregivers in our sample voiced their confusion and frustration regarding how Medicaid did not cover some of the recommended services for their children or only covered services for a short period of time.”
Where You Live Matters
Significant delays are common with autism diagnoses even for families with good insurance or the ability to pay out of pocket, Singh said. However, the caregivers in her study also had to deal with issues of access to providers not faced by wealthier families.
Few care providers are located in the heavily African-American communities of south Fulton County, meaning parents must often travel 20 miles or more to get treatment for their children. Singh and Hong mapped behavioral treatment providers in Fulton County, finding just one in south Fulton County, two in neighboring communities on the south side of the city, and the rest — at least 17 —on the wealthier, predominantly white northern side of the county.
Singh and Hong wrote that “for many of the women in this study, transportation served as a challenge because they relied on public transportation or Medicaid transportation, both of which were not always reliable or practical given these women’s demanding life schedules.”
At least one woman in the study had to give up one of her jobs because she had to frequently miss work to take her child to appointments and deal with crises, Singh and Hong wrote.
‘I Have to Be Superwoman’
Work issues are just one of the compounding factors Singh and Hong write about in their paper. For instance, having to depend on public transportation can make traveling to distant appointments difficult, but having to travel on it with an autistic child adds a new level of complexity.
“Some of the women told stories of how public transportation created environments that were often difficult for their children to handle due to strange smells, loud noises, large crowds, and long wait times,” Singh and Hong wrote.
Women in the study, representative of many single, minority caregivers of autistic children, also had to deal with limited social support networks.
“If you have a child that has a disability, it’s even more pressure on me because it’s like I have to be Superwoman for everybody else,” Singh and Hong quoted one study participant as saying. “I still have to deal with regular stuff and on top of regular stuff, deal with other stuff. Sometimes it’s kind of overwhelming when you don’t have that partner there to help you.”
Solutions Could Include Mobile Therapy, Community Health Workers
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.
Another suggestion: mobile therapy units that accept Medicaid.
“Such easily transportable therapy services would address the problems related to geographic location of services, as well as create options for offering services in the evenings and/or weekends, when working parents are more likely to be available,” Singh and Hong wrote.
Singh is continuing her work with the caregivers in this study, expecting to publish follow-up work in the coming year that focuses more specifically on issues of race and racism.
She also has received a grant from the Ivan Allen College of Liberal Arts Digital Integrative Liberal Arts Center (DILAC) to produce an interactive map of autism service disparities. The map will both help illuminate the struggles the caregivers in her study face, but also act as a resource for care coordinators to help parents get the care their children need. It also may be used as a teaching tool in Singh’s courses focusing on social determinants of health.
“At the end of the day, I am working towards health equity and social justice. Identifying and diagnosing the problem is just the beginning. As a medical sociologist with training in public health, my job is to work towards building equitable and sustainable health programs and interventions,” Singh said.
The article was published in the International Journal of Child Health and Human Development.
The research was conducted in collaboration with I. Leslie Rubin, developmental pediatrician at Hughes Spalding Children’s Hospital. The data collection was funded through a collaboration between Georgia Tech and Children’s Healthcare of Atlanta. The data analysis was funding by the Ivan Allen College of Liberal Arts, Georgia Tech. The study was approved by the Children’s Healthcare of Atlanta, Morehouse School of Medicine, and the Georgia Tech Institutional Review Boards, as well as Grady Research Oversight Committee.
The School of History and Sociology is a unit of the Ivan Allen College of Liberal Arts.