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IU study shows trained clinicians can diagnose autism in young children

Dozens of autism therapy providers say the higher reimbursement rate proposed last week by Indiana’s Family and Social Services Administration (FSSA) is still not enough to cover their rising costs.
Dozens of autism therapy providers say the higher reimbursement rate proposed last week by Indiana’s Family and Social Services Administration (FSSA) is still not enough to cover their rising costs.

Teaching primary care clinicians to diagnose autism in young children is one potential solution to improving care.

That’s according to a study by the IU School of Medicine, which found that primary care clinicians who receive specialized training make accurate diagnoses more than 80 percent of the time.

“When they determine a child has autism, they are highly likely to be right. We did not find a high rate of overdiagnosis. In fact, we found virtually no overdiagnosis,” said Rebecca McNally Keehn, assistant professor of pediatrics and lead author of the study.“So, this is a viable model for getting children diagnosis and access to services.”

Keehn said this early diagnosis is key to providing intervention services for children with autism.

“We have a national public health problem where the number of children needing autism evaluations exceeds the capacity of the specialists who are trained and available to provide these evaluations,” she said. “And this leads to significant delays in autism diagnosis.”

Keehn is one of the leaders of IU’s Early Autism Evaluation Hub system, which provides specialized training for and collaboration with primary care clinicians in the state. The Hub of seven sites was launched by a team of IU faculty in 2012 and has evaluated nearly 5,000 children aged 14 to 48 months in Indiana. 

The recent study of 126 children found an 82% agreement on autism diagnosis between primary care physicians trained by the  Hub and autism specialists and no difference in overall accuracy.

“We know that symptoms of autism emerge in the first year of life, and we can make a reliable diagnosis for most children by 14 months of age,” she said. “Yet the national average for age of autism diagnosis in many areas is still after four years of age.”

So having more primary care clinicians who can diagnose autism is critical, because large portions of the state are rural or considered medically underserved and don’t have qualified autism specialists. Keehn said that can lead to long delays in getting children evaluated and diagnosed.

And a medical diagnosis of autism is required to receive insurance coverage for autism-specific therapies.

“So, it's really critical that we develop strategies to reduce the age of diagnosis, so that children can get access to those individualized services at the earliest point possible,” Keehn said.

According to the Centers for Disease Control, one in 36 children nation-wide are diagnosed with autism. That’s up from one in 150 in 2000.

“We are getting better at recognizing autism,” Keehn said. “So there has been increased awareness national - you see autism on TV and you hear about it on the radio, and many of your friends and family know someone with autism. So, we are moving toward increased awareness and reduced stigma related to autism.”

Patrick Beane spent three decades as a journalist at The Herald-Times in Bloomington before joining the staff at WFIU/WTIU News. He began his career at the newspaper after graduating from Indiana University in 1987 and was the sports editor from 2010-2020. His duties at the paper included writing, copy editing, page design and managing the sports department.