25% of kids with autism haven’t received a diagnosis

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One-fourth of children younger than age 8 with autism spectrum disorder—most of them black or Hispanic—have not received a diagnosis, which is critical for improving their quality of life, researchers report.

The findings show that despite growing awareness about autism, it remains under-diagnosed, particularly in black and Hispanic children, says coauthor Walter Zahorodny, an associate professor at Rutgers New Jersey Medical School and director of the New Jersey Autism Study, which contributed to the research.

As reported in Autism Research, researchers analyzed the education and medical records of 266,000 children who were 8 years old in 2014, seeking to determine how many of those who showed symptoms of the disorder did not have a clinical diagnosis or were not receiving services.

Of the nearly 4,500 children identified, 25% had not received a diagnosis. Most were black or Hispanic boys with deficits in mental abilities, social skills, and activities of daily living who were not considered disabled.

“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,” Zahorodny says.

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

Screening all toddlers, preschool, and school-age children for autism could help reduce the disparities in diagnosis, Zahorodny says. In addition, clinicians can overcome communication barriers by using pictures and/or employing patient navigators to help families understand the diagnosis process, test results, and treatment recommendations.

States can help improve access to care by requiring insurance companies to cover early intervention services when a child is first determined to be at risk rather than waiting for a diagnosis, he says.

Researchers conducted the study through the Autism and Developmental Disabilities Monitoring Network, a surveillance program funded by the US Centers for Disease Control and Prevention that tracks the prevalence of the developmental disorder in 11 states: Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin.

Source: Rutgers University