Wait lists for families looking to evaluate their young children for autism are extensive in Illinois, but a new study from Northwestern University hopes to speed up that process.
“The waitlists to get an autism evaluation are exceptionally long. They were long before COVID, but then, because we shut down, everything became longer. So waitlists that were nine months now became 24 months,” said Meg Roberts, an associate professor and part of the Northwestern University Early Intervention Research Group.
Roberts’ team has received a $3 million grant to help reduce that wait time for Illinois families, as an official diagnosis is often the key to increased access to earlier interventions.
“If you have an autism diagnosis, you are eligible for additional services through a health insurance company,” Roberts said.
Feeling out of the loop? We'll catch you up on the Chicago news you need to know. Sign up for the weekly Chicago Catch-Up newsletter here.
Through the grant, Roberts and her team are conducting virtual evaluations, which they believe improves access for all, improving health equity.
“It disproportionately impacts Black and Latin-X families who are often diagnosed a year later than white children,” Robert said.
Another goal of the study is to increase the pool of people who can make an autism diagnosis.
Local
“Right now, health insurance law in Illinois says that two people can diagnose autism -- clinical psychologists and physicians, and in the early intervention system, it's only physicians that can provide that medical diagnostic,” Robert said.
“What I hope is that we can show that other experts in child development, like speech language pathologists, are as accurate as the specialists, because there are 4,000 SLPs, speech language pathologists, working in early intervention, whereas there's less than 30 developmental behavioral pediatricians for the state,” Roberts said.
Licensed early intervention providers will conduct the virtual sessions, which are recorded and will also be reviewed in parallel with licensed autism specialists, including a clinical psychologist.
“Because we have a clinical psychologist on the team, that diagnosis will then be recognized by insurance,” Robert said.
Northwestern researchers plan to evaluate 1,200 Illinois children through this process and they are recruiting the next group right now.
“We have open slots for families to get appointments within two months,” Roberts said. Families and early intervention providers interested in participating in the study can find more information by contacting the Early Intervention Research Group at Northwestern University.
Ashley Perry signed up her son, Elias, for the study after she became worried that the young boy wasn’t hitting certain milestones.
“Through early intervention, they told me about a research that was being done at Northwestern to get him evaluated because he was on a waitlist,” Perry said.
After several virtual sessions, Elias was diagnosed as on the autism spectrum.
“I always had a suspicion that it possibly was that he was going to be diagnosed with autism. Honestly, it didn't change my perspective. It's honestly how everybody else in the world would perceive him,” Perry said.
The diagnosis has opened up resources now that Elias has turned three and aged out of early intervention programs.
“They gave me so much and I'm just trying to make sure I make those phone calls and call who I need to, so that way, he can still be able to progress,” Perry said.
