A quarter of kids with autism may go undiagnosed, Rutgers study finds

A new Rutgers study has found that one-fourth of children with autism spectrum disorder may go undiagnosed.

Moreover, children whose autism is not recognized are more likely to be black or Hispanic, according to findings published last month in the journal Autism Research.

The bottom line, the new findings suggest, is that children whose lives could be improved by getting needed services may be falling through the cracks.

“There may be various reasons for the disparity, from communication or cultural barriers between minority parents and physicians to anxiety about the complicated diagnostic process and fear of stigma,” said study co-author Walter Zahorodny, an associate professor of pediatrics at Rutgers New Jersey Medical School.

“Also, many parents whose children are diagnosed later often attribute their first concern to a behavioral or medical issue rather than a developmental problem,” he added.

Children of color have long been suspected of being under-diagnosed with autism, the nation’s fastest growing development disability. Characterized by communication and social difficulties or deficits and repetitive behaviors, autism must be detected early in order to help children reach their full potential, experts agree.

The study was conducted by reviewing medical and education records of children in 11 states, including New Jersey, that are part of the federal Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network. Studies are performed within the network to estimate autism prevalence rates.

The researchers analyzed records of 266,000 8-year-old children, and found 4,550 who met the diagnostic criteria for autism. Of those children, 1,135 had not been diagnosed with the disorder. Black and Hispanic children were more likely to be in the undiagnosed group.

When the network’s prevalence rates for 8 year olds were last released in 2018, one in 59 children were estimated to be on the spectrum. New Jersey had the highest prevalence, with a rate of one in 34 children. Diagnosis of children of color at the time appeared to be increasing, but the new study suggests there is still substantial need for improvement.

Zahorodney, who directs the New Jersey portion of the study, said findings like this underline the need for universal screening for autism.

“I have no problem advocating that every child be screened at 18 and 24 months,” Zahorodney said. “In fact, I’m a person who would be most likely to say not only at 18 and 24 months but given what we see about late detection, I would do screening at 30 or 36 months and again at 40 or 48 months because there are still children who are getting to school age without evaluation.”