A new study led by Indiana University School of Medicine researchers shows primary care clinicians who receive specialized training can make accurate autism diagnoses for over 80 percent of young children referred with developmental delays, providing compelling evidence that community-based models of autism evaluation are a potential solution for improving access to this needed service. They recently published their findings in Pediatrics.
One in 36 children are now diagnosed with autism, according to the latest 2023 report from the Centers for Disease Control. In many regions of the county, waitlists for autism diagnostic evaluations often exceed a year and families regularly travel long distances to access the limited number of specialists who are qualified to perform these evaluations.
“The bottleneck families experience in their road to an accurate diagnosis is a public health problem, because these delays in diagnosis lead to delays in accessing intervention services which are known to improve child and family outcomes,” said Rebecca McNally Keehn, PhD, assistant professor of pediatrics and lead author of the study.
A team of IU School of Medicine faculty, including Mary Ciccarelli, MD and McNally Keehn, lead the Early Autism Evaluation (EAE) Hub system, a statewide network that provides specialized training and ongoing collaborative learning with community primary care clinicians. EAE Hub clinicians perform evaluations of children ages 14-48 months who are at increased likelihood of autism. Nearly 5,000 children have been evaluated for autism in their local communities since the EAE Hub system was launched by an interdisciplinary team of IU faculty in 2012.
Of the 126 children who participated in this study, researchers found an 82 percent agreement on autism diagnosis between trained EAE Hub primary care clinicians and expert autism specialists. Across seven EAE Hub sites, there was no difference in overall accuracy of diagnosis.
“With over 80 percent of children receiving an accurate diagnosis and virtually no over-diagnosis, our study shows that the EAE Hub model is a valid and reliable approach to early autism evaluation,” said McNally Keehn. “This study provides strong evidence that many young children at increased likelihood for autism can receive reliable diagnostic evaluations in their local primary care setting. The model also reduces barriers for young children and their families who might otherwise have to travel long distances and endure long wait times. If the EAE Hub system were to be scaled up to further to meet the needs of all young children in Indiana, it could reduce the burden on specialty healthcare services and reduce wait times for those children who do need the higher level of diagnostic expertise of specialists.”
The EAE Hub system has been generously supported by the Riley Children’s Foundation and Kiwanis Indiana. The current study was funded by the National Institute of Mental Health with pilot funds from the Indiana Clinical and Translational Sciences Institute and Purdue Big Idea Challenge 2.0.
In addition to McNally Keehn, other study authors from IU School of Medicine include Nancy Swigonski MD, MPH; Brett Enneking PsyD; Tybytha Ryan, PhD; Patrick Monahan, PhD; Ann Marie Martin, PhD; Angela Paxton; and Brandon Keehn, PhD.
This story was originally published by Indiana University on July 18, 2023.