Black children with autism spectrum disorder (ASD) are diagnosed an average of three or more years after their parents initially mention concerns about their language or development, according to a study published in the journal Pediatrics this week.
The researchers say that structural racism may be a significant driving force in these delays.
“Between the time when parents began verbalizing their first concerns, and the time their child received a diagnosis, that difference — on average — was about three-and-a-half years,” Dr. John Constantino, director of the Intellectual and Developmental Disabilities Research Center at Washington University in St. Louis and an author on the study, told HuffPost.
“These were parents whose children, by and large, were insured. They had access to health care,” he continued. “And these obstacles to diagnosis were not happening because parents weren’t bringing forward a recognition of a problem or delay.”
Nationwide, one in 54 children in the U.S. has been diagnosed with ASD. For years, national data suggested that fewer Black children had ASD, but as the authors of the new study point out, that gap has narrowed. Experts now understand that Black children with ASD were simply less likely to be identified.
But as the new findings reveal, they are not necessarily being identified early enough. And prior research suggests that is the case for Black children more so than white children who tend to be diagnosed months earlier in their lives.
Constantino and his co-researchers analyzed data on more than 580 Black children who’d been diagnosed with autism and were enrolled in an autism research network, a collection of sites at universities across the U.S.
They found many reasons that may have contributed to the extensive delays in diagnosis. More than 35% of the parents said they’d experienced a significant wait time in seeing a professional. More than 40% said they saw multiple professionals. And almost 15% of parents said it took at least six professionals before their child was diagnosed.
In an editorial accompanying the study, written by several experts with Boston Medical Center, other possible causes are addressed. Black parents may be more likely to experience racial bias and discrimination. A profound lack of diversity marks the health care providers available to them (only 2% of neuro-developmental pediatricians in the U.S. are Black, the authors point out). Also, developmental specialists tend to be concentrated in areas were more white families live.
All of these factors may contribute not only to avoidable delays in diagnosis, but affect the ability of parents to connect with support services for their children early on.
Constantino called the situation a “public health emergency.”
“What this paints a picture of is not only a delay in diagnosis,” he said, “but a very severe deficit in access to reasonable, appropriate developmental therapies.”