Autism doesn’t discriminate. Autism research shouldn’t either

The face of autism was once predominantly white. No longer.

The Centers for Disease Control and Prevention reported last year that the prevalence of autism across all racial and ethnic groups is reaching parity. Among 8-year-olds in particular, autism was more commonly identified among Black, Hispanic and Asian American/Pacific Islander children than among their white counterparts for the first time ever.

Given that there is no biological reason to suggest a difference in autism prevalence based on race or ethnicity, the increase in diagnoses across all racial groups is good news. The bad news is that, within communities of color, societal and systemic barriers continue to impede access to autism diagnosis and support services that provide proven, lifelong benefits to all children.

Since Black children with autism are also more likely to have one or more other intellectual disability diagnoses, access to services and deeper research into the experience of Black families with autism is critical. Failure to change the current dynamic will not only have serious consequences for individuals, families, and communities, but will hinder the ability of researchers to unravel the connection between intellectual disability and autism among Black children.

New research from a trial I lead called SPARK, (Simons Powering Autism Research for Knowledge), the largest ongoing study of autism, documents the social and systemic barriers that families of color face as they navigate the complex world of autism diagnosis and access to services.

In two separate studies of Black families with autism, partially funded by SPARK, investigators from Vanderbilt University and the University of Arkansas found that cultural barriers, stigma, and a basic lack of understanding of autism often led to delays in seeking an initial diagnosis. What’s more, when Black families did seek an evaluation or tried to access services, many experienced cultural bias and overt racism. Both studies underscore the role of misinformation, misperception, and misunderstanding in perpetuating false narratives about autism and increasing the amount of anxiety parents felt about receiving a diagnosis.

The Vanderbilt study documents the lived experience of 400 Black or multiracial families seeking care. In it, one in 10 parents said they delayed seeking an evaluation for their child because they simply did not know enough about autism and its signs. When Black parents did seek help, they often encountered a system misaligned with their needs. Parents noted evaluations that relied on toys and activities their children weren’t familiar with, clinicians who didn’t understand their culture, and a scarcity of available, affordable resources within their communities.

Even more alarming, 22% of the Black and multiracial families surveyed in the Arkansas study shared specific examples of racism they experienced during the diagnostic process, including health care professionals who appeared to be “passing off behaviors that Black children display as ‘a Black thing,’ assuming families wanted to ‘use [their children] to gain money from the government,’ or ‘expect[ing] Black kids to naturally be wilder and have behavior problems.'”

As a pediatrician, I find this deeply upsetting and inexcusable. As a clinical researcher, it is a direct threat to the future of the work I and others do.

Autism research must not discriminate

While SPARK now includes more than 21,000 Black families in its research network, its overall research population of more than 175,000 families continues to be predominantly white. To completely understand the genetic causes of autism; inform new support systems, tools, and technologies; and fully explore the reasons for a higher preponderance of intellectual disability diagnoses among Black children with autism, a more diverse research population is needed.

But expanding the research population to adequately represent the racial, ethnic, and socioeconomic diversity of the autism community will not happen organically. A concerted effort is needed to close the gap between access and research.

As part of SPARK’s diversity, equity and inclusion program, my colleagues and I are encouraging investigators to connect with local organizations working directly in their communities. SPARK research sites — there are 30 around the country — are reaching out to expand access to their world-class diagnostic evaluations and services, and building programs to deliver much-needed support to their communities.

If researchers can venture beyond the lab and into the churches and community centers where honest conversations happen, they can help rebuild trust, change attitudes, and inspire positive action — and then deliver real value to people who have come to expect little from the U.S. health care system. Such an approach would demonstrate that research is reciprocal. What researchers learn from the people and communities around them gets poured back into those communities and extended to others.

Autism exists on a spectrum because it is an inherently diverse condition. It manifests everywhere, paying little mind to culture, gender, race, religion or family income. Within this magnificent diversity there is only one constant: every person with autism deserves access to dignified care and support to help them thrive.

Wendy Chung, M.D., is the chief of pediatrics at Boston Children’s Hospital and the principal investigator for SPARK.