Indiana autism evaluation hub helps diagnose thousands of kids

INDIANA — April is Autism Acceptance Month. It’s a time to emphasize understanding, inclusion and support, moving beyond awareness towards meaningful acceptance.

According to the organization Autism Speaks, autism spectrum disorder refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication.

Important work is happening here in Indiana to make diagnoses easier and faster for families.

The Early Autism Evaluation Hub started out of the IU School of Medicine in 2012. It has 17 hubs across the state, in rural and urban areas.

The hub aims to diagnose autism faster and more effectively by improving localized access to early diagnostic evaluations for young children.

Rebecca McNally Keehn is the co-director of the hub. She also helped develop an eye-tracking technique that is being used to help diagnose autism sooner and with more accuracy.

She said in the past 12 years, the hub has helped diagnose more than 6,500 young Hoosier children at their local primary care doctor.

“I encourage parents, when they are concerned, to talk to their doctor, to push for that screening, to push for that evaluation,” she said. “Because what we know is that early diagnosis and early access to intervention can improve outcomes and well being of the child and the family.”

McNally said one of the major challenges in Indiana, and the nation as a whole, is that sometimes families and kids are waiting a year or more to get an autism evaluation.

New preliminary data from from the CDC, shared by Health and Human Services Secretary Robert F. Kennedy Jr. this week, shows one in 31 kids now fall somewhere on the autism spectrum in 2022.

That’s an increase from one in 36 diagnoses found in 2020. The CDC reported that number to be one in 150 back in 2000.

McNally said we as a country are getting much better at accepting and recognizing autism. She said our diagnostic criteria has expanded with more research.

She said they even have a research team in Kenya studying ways to improve diagnosis and resources in constrained settings.

“We are taking lessons we learn in those global settings to inform better and more creative approaches to be used in (rural and urban) areas,” she said.

Autism Speaks reports that in the U.S., about four in 100 boys and one in 100 girls have autism.

We asked her what causes autism. She said it is important to remember that every person who has it is unique.

“There’s the saying that goes if you’ve met one person with autism, you’ve met one person with autism, meaning that autism is a very varied presentation in each individual,” she said. “What we know from lots of excellent scientific research is that autism is caused by a combination of genetic factors and environmental factors, but those causes are different in every single autistic person.”

She wants parent to feel empowered to seek help and ask their doctor about an evaluation if they feel it is necessary.

“We know that parents are the best experts on their children,” she said. “They’re often the first to identify concerns or maybe differences in their child’s development. An autism diagnosis doesn’t change the child, it just gives us a pathway forward to know how to best support that individual child and family.”