Researchers at Indiana University School of Medicine have developed a new system to screen and evaluate children for autism spectrum disorders. The primary care-driven system will be implemented statewide with a goal of determining if a children has an autism spectrum disorder (ASD) at an earlier age.
A 2020 report from the Centers for Disease Control estimates that 1 in 54 children in the United States is identified each year with ASD. While children can be diagnosed with ASD as early as 2 years old, most children are still being diagnosed after the age of 4.
A growing body of evidence supports the value of early diagnosis and treatment. Studies have found that early evidence-based interventions can significantly improve the quality of life of those with ASD as well as of their caregivers and families.
This study, published in Pediatrics, is the first of its kind in the U.S. to include health care systems across an entire state.
“One of the unique aspects of this effort is its scale. While similar innovative diagnostic approaches have previously been tested across the country, our primary-care based Early Autism Evaluation hubs provide data representing much of the state of Indiana,” said lead author Rebecca McNally Keehn, Ph.D., H.S.P.P.
In the initiative, primary care physicians and nurse practitioners are trained to provide specialized ASD evaluation in a series of hubs located across the state. Evaluation wait times and mean age of diagnosis are significantly reduced when compared to specialized diagnostic centers.
Nancy Swigonski, M.D. and Mary Ciccarelli, M.D., led their team to develop the statewide early ASD screening and evaluation system in the primary care setting. They discovered the approach was successful in improving access to evaluations and lowering the age of diagnosis.
“By improving access to earlier high-quality diagnostic evaluations in children’s local communities, our hope is that children will be enrolled in evidence-based interventions that can improve developmental outcomes here in Indiana,” Keehn said.
Of over 2,000 patients evaluated at the Early Autism Evaluation (EAE) hubs across Indiana from 2012 to 2018, 33 percent have received an ASD diagnosis. The mean age of diagnosis in the hubs is 30 months, while the national average hovers around 48-plus months.
The study also found that the average wait-time to be seen for evaluation at an EAE hub was 62 days, compared to previous estimates of 9 to 12 months in specialty diagnostic centers.
“This system empowers communities to be able to provide life-changing diagnostic services locally, drastically altering the trajectory of development in children who previously remained without diagnoses until age 5 or older,” said Naseer Syed, M.D., pediatrician at Meridian Health Services in Muncie, Indiana.
“To actively be a part of something that life-changing is a reward in and of itself. To witness the impact this has on the child and their family makes it all worthwhile.”
A critical component of the EAE hubs is the partnership of organizations and professionals across the state of Indiana working together to get needed care to families potentially facing this diagnosis.
Syed is one of more than 30 primary care physicians and nurse practitioners statewide who have been trained by EAE hub leadership to provide this specialized ASD evaluation.
This training allows physicians to be able to identify children who are at risk for ASD in a 90-minute primary care visit and then to collaborate with the referring primary care physician to access interventions and community resources.