Creating Statewide Support for "Superhero" Brains
Joshua Karr is a vibrant first-grader with a particular talent for math. He is inventive and loves creating art and building with Legos. Joshua keeps his family laughing, and he is the first to cheer them up when they feel sad.
Joshua also has autism. His mother Laurren says he benefitted from an early diagnosis and the support, resources, and therapy it unlocked, including ongoing care at Riley Hospital for Children at Indiana University Health.
“The team at Riley was so optimistic and hopeful because of his age – he was only 2 when he was diagnosed,” Laurren said. Despite the challenges of the past year, “Joshua has really been able to thrive with the new rhythms and schedules we’ve been able to create.”
“Joshua is really proud of who he is – that includes being proud of his autism and what we call his ‘superhero brain,’” Laurren shared. “He knows that his autism sometimes makes things a bit harder for him, but he also knows that it is a part of what makes him so smart and good at so many things.”
With support from Riley Children’s Foundation donors – mostly notably the Indiana District of Kiwanis – many more Hoosier children like Joshua are being diagnosed at younger ages thanks to Early Autism Evaluation Hubs across the state.
The hubs were developed by Riley-affiliated pediatricians at Indiana University School of Medicine, in partnership with different health systems and community organizations. The goal is to improve early detection and intervention for children ages 1-4 years old with Autism Spectrum Disorder (ASD) or other developmental delays.
“This project is special. It’s looking at the state through a population approach that uses geographic outreach to limit healthcare disparities both at the point of diagnosis and subsequently,” said Mary Ciccarelli, M.D., a Riley physician and Morris Green Professor of Pediatrics at IU School of Medicine who leads the initiative.
As a result of the program, clinicians trained in early diagnosis now practice at 14 evaluation sites in 10 different health systems across the state, allowing families to get a diagnosis faster and closer to home. Each year, primary care clinicians evaluate about 900 families with these services.
An earlier diagnosis of Autism Spectrum Disorder means earlier access to interventions, setting children on track for better outcomes in life. Research shows receiving a diagnosis before age 3 can make a significant difference in a child’s development and behavior, educational progression, and eventual ability to live or work independently. But nationally, the average age of diagnosis remains after age 4.
The benefits of the Early Autism Evaluation Hubs are already unfolding. A study published last year in Pediatrics, one of the premier scientific journals focused on pediatric medicine, showed that among Hoosier children evaluated by the Early Autism Evaluation hubs, the average age of diagnosis is 30 months.
Importantly, children evaluated in the hubs also experience a significantly reduced wait-time to receive an evaluation: an average of two months, rather than the prior wait of nine to 12 months.
A new article published in March in the Journal of Pediatrics by the program’s lead researcher, Rebecca McNally Keehn, Ph.D., further explored the specific concerns of parents and primary care physicians who refer at-risk children to the hubs. These insights will help the project further hone their early identification practices. Dr. McNally’s research is also supported by Riley Children’s Foundation.
Dr. Ciccarelli credits the Indiana District of Kiwanis with helping to make this vision a reality. Through its Three Wishes Campaign, Kiwanis Clubs throughout Indiana raised $1 million for the initiative.
“When you start innovative projects like this, it’s not easy to get funding from national organizations,” said Dr. Ciccarelli. “It would not have happened without these donor funds.”
“We can attest firsthand to the difference early diagnosis and intervention can make,” Laurren Karr said. “Joshua h
as learned so many wonderful skills that will help him break through any barriers that he comes up against in the future. The hubs are an asset to our communities and our state.”
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