Autism Spectrum Disorder continues to be a mystery in many ways, but that is even more true for some communities than others. White children are more likely than Black or Latinx kids to be diagnosed with ASD, but that’s not because the condition itself discriminates. Increasingly, deeper investigations into this phenomenon reveal that other factors, like institutionalized bias, and lack of medical access, are to blame for much, if not all, of the difference in diagnosis rates.
How do Autism Spectrum Disorder diagnoses vary among different racial and ethnic groups?
Research shows that white children are more likely than kids of color—particularly Black and Latinx—to be diagnosed with ASD. According to the CDC’s Autism and Developmental Disorders Monitoring Network (ADDM Network, for short), this difference in identifying autism in Black and Latinx children is a problem because it means these kids might not be getting the services and treatment they need in order to reach their full potential.
The CDC measures the difference in identification rates among different racial and ethnic groups using something known as the prevalence ratio. In basic terms, this ratio measures the difference in the likelihood that people of different groups of, in this case, being diagnosed with ASD. For reference, a prevalence ratio of 1.0 indicates that there is no difference between the two groups being compared while a larger ratio points to a larger difference.
According to the most recent ADDM report, documented prevalence ratios of ASD between different white children and both Black and Latinx children are going down, which suggests that previous reports were likely skewed by under-diagnosis among Black and Latinx children. The most recent data from the CDC shows prevalence ratios of 1.1 between white and Black children and 1.2 between white and Latinx children, compared to peak differences in 2006 of 1.4 between white and Black children and 1.7 between white and Latinx children. As a 2009 report in the National Institutes of Health notes, studies of differences in diagnosis of ASD among different groups are limited because only children with documented diagnoses are included—and, for a variety of reasons, children in minority groups are more likely to be misdiagnosed or diagnosed later in life than white children with ASD.
Why are there racial and ethnic disparities in autism diagnoses?
So why do these disparities in diagnosing ASD exist? Experts point to several factors that are likely to play a role.
The ADDM Network postulates that the differences in diagnosis rates may point to “socioeconomic or other barriers that lead to a lack of or delayed access to evaluation, diagnosis, and services” and notes that “studies have shown that stigma, lack of access to healthcare services due to non-citizenship or low-income, and non-English primary language are potential barriers to identification of children with ASD especially among Hispanic children.”
Other studies have shown that Black children, in particular, are more likely than white children to be misdiagnosed with conduct disorders before being properly diagnosed with ASD—5.1 times more likely, to be exact. Even if misdiagnosis isn’t a factor, studies have shown that doctors are just more hesitant to diagnose ASD in minority patients than in white patients.
In addition to issues on the doctor side of the equation, studies have also shown that some minority parents may be less likely to raise concerns about signs of ASD with their healthcare providers. A recent study from Georgia State University, for example, found that Black parents were less likely to bring up behaviors like delayed speech and repetitive behaviors with their children’s doctors.
Together, these factors add up to a major problem for Black and Latinx families impacted by autism.
What can we do about the disparities in ASD diagnoses in different communities?
That raises the most important question of all—what can we do to begin to fix this problem? Obviously, this isn’t an issue that can be solved overnight, but there are two things that can be done right away to start that process.
First, we must commit, as a society, to providing equitable funding of services for children with developmental disorders across communities. In Los Angeles, for example, the Departments of Developmental Services operates several Regional Centers, which offer services to the developmentally disabled. Even though the centers, which are spread out across the city, are funded by the same department, they aren’t funded equally. As of 2017, the South Central Regional Center was spending $8,000 less per client than the Westside location in Culver City. Funding disparities like this perpetuate the disparities in diagnosis and treatment of ASD in those underfunded communities, many of which are home to more children of color.
Second, training and education are vital, both for parents of Black and Latinx children, and for the professionals who work with those children.
"We've implemented a series of trainings with intake counselors on cultural awareness and sensitivity, and we're starting to have a lot of conversations about biases," Tom Kelly, the Westside Regional Center's chief psychologist, explained to NPR in 2018.
It’s vital, as we move forward, to work to close the gap that exists between the treatment and level of care children of different races, backgrounds, and socioeconomic groups receive. Every child deserves the best possible treatment to set them up for success throughout their lives as they—and their families—continue to deal with ASD.