In Illinois and around the U.S., wait times for families seeking provider evaluations of toddlers who might have autism have been lengthened by the pandemic. But every month that goes by is precious time lost, because earlier diagnoses can lead to earlier interventions that improve outcomes for kids and support for their families.
A new $3 million, four-year grant from the National Center for Special Education Research led by Northwestern University’s Megan Roberts, an associate professor in the Roxelyn and Richard Pepper Department of Communication Sciences and Disorders in the School of Communication, aims to change that while reducing the time to diagnosis for hundreds of kids, which can have lifelong benefits.
“Kids can learn and develop throughout their lifetimes, but the first three years are the period during which the brain is most receptive to new information. So, when children might need additional support, that is the best time to build foundations for later learning,” Roberts said.
Through the grant, Roberts and her team will recruit both families of children who are showing signs of autism and licensed early intervention (EI) providers — including speech and language pathologists and developmental therapists — who will meet with kids and their families for three, one-hour virtual sessions. The providers will gather information from families and children, perform evaluations and offer a diagnosis in parallel with licensed autism specialists who have traditionally offered diagnoses.
All the families who receive diagnoses through the grant will be from Illinois, where the autism diagnosis waitlist was more than nine months long at the time that Roberts applied for the grant in September 2021, she said. Special emphasis will be placed on recruiting families from underserved areas with fewer resources, including rural Illinois and Chicago’s South Side. To better accommodate the schedules of working parents, the study will also offer evening and weekend virtual visits.
The grant aims to improve access to autism evaluations with its virtual format, while also potentially increasing the number of providers who are allowed to diagnose autism by expanding the pool of qualified providers beyond specialists, who typically have been the only ones allowed to make official diagnoses, creating a bottleneck that has sometimes frustrated families, Roberts said.
However, EI providers are also autism experts with substantial training, according to Roberts, who should be qualified to make official diagnoses. To ensure that EI providers diagnose in the same way that specialists do, the study will compare evaluations of the same children made independently by specialists and EI providers to ensure that they have a robust level of agreement.
The aim is to demonstrate that early intervention providers are as accurate as specialists, thus forever changing the landscape of autism diagnosis.
During the study period, official diagnoses will continue to be offered only by specialists, but both the specialists and EI providers will be paid by the grant and families on the waitlist will be given special access to them at no cost, such that the waitlist will begin to get shorter even before the research is complete.
“If we can demonstrate that the EI providers are as accurate as the specialists, that will forever change the landscape of autism diagnosis, not just in Illinois, but everywhere,” Roberts said. “That’s why I love this grant, and am so excited about it.”
Overall, the process outlined in the study — broadening access to providers, expanding the pool of providers and reducing wait times — represents a significant step forward from the pre-pandemic status quo, Roberts said, that could have a permanent, positive impact. The study will also train EI providers using a standard set of materials, which could be adapted for use nationally if they prove successful, she added.
Though the waitlist grew especially long during COVID, prompting Roberts to propose this solution, it has always been longer than necessary, she said, which is ultimately detrimental to kids. Every child who receives a faster diagnosis stands to benefit, and families who participated in a pilot version of the study broadly agreed that an alternative approach to the diagnostic process was needed, and that Roberts’ solution was effective.
Jennifer Wilkinson, who lives in the western suburbs, said she initially second-guessed herself when she began to suspect that her youngest daughter Avalon (now age 5) might have autism. Still, she sought out interventions for Avalon beginning at 18 months to address developmental delays, and ultimately decided to have her tested for autism in 2019.
After six-months of waiting, Avalon was set to begin a series of in-person diagnostic appointments in spring 2020, but COVID-19 lockdowns delayed them.
“The timing was challenging because Avalon was going to turn 3 and lose the early interventions we had been doing,” Jenn said. “She would have been going into preschool with no diagnosis and no therapies.”
That’s when Wilkinson heard from an EI provider about the virtual pilot program that Roberts had initiated. The EI program made a big difference, she said. It was a relief to have the information and diagnosis they needed to get interventions before preschool, and Avalon is now doing well at the same school that an older sister attends.
“The nice thing about all of this was that we were in our environment,” Wilkinson said. “In a new place, after a long drive, with new people and different toys in a white room, Avalon might have acted differently than she does at home. Instead, we flipped on the computer here — in our own living room, with our own toys — and it was very organic. That made things clear to the providers, and the process efficient for us.”
Families and EI providers interested in participating in the study can find more information by following the Early Intervention Research Group on Instagram @ei.northwestern for study updates or by contacting the Early Intervention Research Group at Northwestern.