A quarterly publication of the Autism Research Institute

The Autism Research Review International is quarterly publication of the Autism Research Institute

Winter, 2020 | Number 1, Volume 34

Many young children with ASD are not diagnosed

One quarter of young children with autism spectrum disorders (ASD) do not have an autism diagnosis, according to a new study. 

Lisa Wiggins and colleagues reviewed the education and medical records of 266,000 U.S. children who were eight years old in 2014, identifying 4,498 children who had sufficient social and behavioral deficits to meet criteria for ASD and/or already had an ASD diagnosis. Of this group, the researchers say, “1,135 (25%) had ASD indicators without having an ASD diagnosis.” They add, “Of those 1,135 children without a documented ASD diagnosis, 628 (55%) were not known to receive ASD services in public school.” Children were more likely to be undiagnosed if they were non-white, did not have an intellectual disability, were older when developmental concerns first arose, were older at the time of their first developmental evaluation, were eligible for special education for reasons other than ASD, or needed fewer supports. 

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

The researchers say, “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.”


Citations

“Disparities in documented diagnoses of autism spectrum disorder based on demographic, individual, and service factors,” Lisa D. Wiggins, Maureen Durkin, Amy Esler, Li-Ching Lee, Walter Zahorodny, Catherine Rice, Marshalyn YearginAllsopp, Nicole F. Dowling, Jennifer Hall-Lande, Michael J. Morrier, Deborah Christensen, Josephine Shenouda, and Jon Baio, Autism Research, December 23, 2019 (online). Address: Lisa D. Wiggins, [email protected]

—and— 

“One-fourth of children with autism are undiagnosed,” news release, Patti Verbanas, Rutgers University, Jaunary 9, 2020.