Summary: A quarter of children under the age of eight on the autism spectrum are not being diagnosed, a new study reports. Those most affected are minority children.
One-fourth of children under age 8 with autism spectrum disorder — most of them black or Hispanic — are not being diagnosed, which is critical for improving quality of life.
The findings, published in the journal Autism Research, show that despite growing awareness about autism, it is still under-diagnosed, particularly in black and Hispanic people, said study co-author Walter Zahorodny, an associate professor at Rutgers New Jersey Medical School and director of the New Jersey Autism Study, which contributed to the 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 were not clinically diagnosed or receiving services.
Of the nearly 4,500 children identified, 25 percent were not diagnosed. Most were black or Hispanic males 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 said, “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 said. 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 said.
The research was conducted through the Autism and Developmental Disabilities Monitoring Network, a surveillance program funded by the U.S. 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.
About this neuroscience research article
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Disparities in Documented Diagnoses of Autism Spectrum Disorder Based on Demographic, Individual, and Service Factors
The objectives of our study were to (a) report how many children met an autism spectrum disorder (ASD) surveillance definition but had no clinical diagnosis of ASD in health or education records and (b) evaluate differences in demographic, individual, and service factors between children with and without a documented ASD diagnosis. ASD surveillance was conducted in selected areas of Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin. Children were defined as having ASD if sufficient social and behavioral deficits and/or an ASD diagnosis were noted in health and/or education records. Among 4,498 children, 1,135 (25%) had ASD indicators without having an ASD diagnosis. Of those 1,135 children without a documented ASD diagnosis, 628 (55%) were not known to receive ASD services in public school. Factors associated with not having a clinical diagnosis of ASD were non‐White race, no intellectual disability, older age at first developmental concern, older age at first developmental evaluation, special education eligibility other than ASD, and need for fewer supports. These results highlight the importance of reducing disparities in the diagnosis of children with ASD characteristics so that appropriate interventions can be promoted across communities.