According to a 2017 study published in the “American Journal of Public Health,” disparities in both diagnoses of autism and access to quality care continue for racial minorities. For example, Hispanic children are 65 percent less likely and black children 19 percent less likely than white children to be diagnosed with autism, noted an article on the Spectrum News website.
Researchers studied data gathered between 2000 and 2010 from the U.S. Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network. They discovered that autism prevalence rose almost evenly among high-, middle- and low-socioeconomic groups between 2002 and 2010. As noted in the Spectrum News article, they also found that prevalence roughly doubled in the three racial/ethnic groups, indicating that autism awareness and access to services are increasing for all the groups, but that prevalence in minority groups is still considerably lower than in white children.
Early interventions can significantly improve outcomes for children and their families. Because they are diagnosed later, minority children may require longer and more intensive intervention, noted a 2011 study, “Autism and the African American Community.” The results of a literature review done by the study authors indicated that a possible reason for the delay in diagnosis may be related to lack of access to adequate healthcare services. The authors wrote that African-American children diagnosed with autism are also less likely to receive regular medical and diagnostic services than their white counterparts.
African-American children are also misdiagnosed at high rates, which in turn leads to delayed intervention. NPR reported that a 2007 University of Pennsylvania study found that African-American children on the autism spectrum are 5.1 times more likely to be misdiagnosed with behavior disorders before they are correctly diagnosed with autism. The article pointed out that “families and doctors, alike, can mistake ASD for simple bad behavior, especially in boys, as research has shown over the past couple of decades.”
Historical discriminatory healthcare experiences may also result in later diagnosis for minority children. In “Autism and the African American Community,” the authors pointed out that many minorities receive racial slights that make them feel “personally inadequate, incompetent, and powerless in the helping process.” In addition, the study noted, contemporary inequalities such as lack of insurance and fewer services offered by Medicaid providers may also play a role.
A recent study from Georgia State University, cited in the NPR story, found that African-American parents reported “fewer concerns about behaviors like delayed speech and repetitive behaviors, even though their children showed a greater severity with these symptoms, overall. But, of course, it isn’t all up to parents.”
While the NPR story did not note any one cause, it did quote Meghan Rose Donohue, a lead researcher on the study, who said that it’s likely both parents and clinicians may contribute. It’s possible, the article noted, that families may not have the information they need to push physicians and that healthcare providers don’t take the cases as seriously as they should.
Healthcare providers may be starting to pay more attention to these disparities. In Los Angeles, an agency that provides services to the developmentally disabled is looking at the diagnosis disparity problem, with funding from a state grant. The agency is implementing trainings to educate staff on cultural awareness and sensitivity and initiating internal conversations about bias, notes the NPR article.
The fact that researchers, healthcare providers, and the media are paying attention to this issue in the autism community is promising and holds hope that the disparity gaps can be narrowed sooner rather than later.