MONDAY, Aug. 24, 2020 — It takes close to three years for a Black preschooler with autism to get a definitive diagnosis, a new U.S. study finds.
That delay means that young Black Americans miss out on early intensive treatment that is essential to help children with autism be better able to deal with school and social life, the researchers said.
“It’s not the parents who are delaying diagnosis, it’s the system,” said researcher Dr. Daniel Geschwind, director of the Center for Autism Research and Treatment and a professor of neurology at the University of California, Los Angeles.
“There’s something going on in the system,” Geschwind said.
Parents in this study recognized early that something was wrong with their child and tried to get help, he noted. Also, most parents had insurance that would have paid for diagnosis and treatment.
Despite this, roughly 40% of the parents saw multiple providers before getting a diagnosis, Geschwind said.
One factor that delayed diagnosis was access to the kind of professionals qualified to make a definitive diagnosis. According to the report, 31% of parents said that a lack of available professionals able to make an accurate diagnosis contributed to the delay.
Often the children were misdiagnosed as having attention-deficit/hyperactivity disorder or oppositional defiance disorder before being diagnosed correctly with autism, Geschwind said.
It’s not known exactly how long it takes for white children with autism to be diagnosed, he said. But according to the U.S. Centers for Disease Control and Prevention, the median time it takes to be diagnosed is 52 months, versus 65 months for Black children, Geschwind explained.
The new findings are based on a study of nearly 600 Black children with autism in the United States who took part in the Autism Genetic Resource Exchange.
Geschwind said the substantial delay in getting a diagnosis prevented these kids from receiving early treatment that could reduce the risk of intellectual disability caused by starting treatment late.
Early therapy can include applied behavior analysis, which works to increase behaviors that are helpful and decrease behaviors that are harmful or affect learning.
The solution, according to Geschwind, is a change in how the system handles these children. Greater access to trained professionals is needed, and if a racial or cultural bias exists, it needs to be overcome, he said.
The report was published online Aug. 24 in the journal Pediatrics.
Dr. Sarabeth Broder-Fingert is an associate professor of pediatrics at Boston University School of Medicine, who co-authored an accompanying journal editorial. “We feel like there are multiple issues of systemic racism that are likely contributing to the delays,” she said.
Also, for parents whose insurance is through Medicaid, it can be difficult to find a doctor who takes that insurance because of its low reimbursement, Broder-Fingert noted.
The practical consequence of delayed diagnosis is missing out on treatment that might help preschool children.
“One could imagine that if you were getting 20 hours a week of treatment, the difference if you’re diagnosed even one year later, it’s 1,000 hours of treatment that you’re missing,” Broder-Fingert said.
“In this study, it was more like two to three years, that’s 2,000 to 3,000 hours’ worth of treatment that these kids are missing out on, and one can imagine how that could be extremely impactful on their lives,” she added.
Broder-Fingert believes that more providers qualified to diagnose autism are needed, especially those who see Black children.
“If you have concerns about your child’s development, unfortunately, right now, the system we have in place is not doing its job and detecting and supporting you and your family and getting a diagnosis as well as we would like,” she said.
“At the moment, parents are going to have to advocate for their children, especially parents from marginalized communities, as we continue to work to improve the system so that the burden is no longer on the family, but it’s actually on the system to provide the support families need to get the diagnosis,” Broder-Fingert said.
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Posted: August 2020