Projects Aim to End Waits for Autism Diagnoses, Reduce

Months of lockdowns have left a massive backlog of children who show the warning signs of autism, waiting for a formal evaluation to get help.

That’s why Megan Roberts hopes to move autism evaluations out of doctors’ offices and onto Zoom conferences, using staff who already work regularly with schools and early learning centers. In the process, she also hopes to clear the entire waiting list of 1,224 children in need of an autism evaluations in Illinois.

Roberts’s project is one of seven projects that have been awarded a share of $14 million grants from the National Center for Special Education Research. All of the funded projects are focused on supporting students with disabilities who have been disproportionately affected by the pandemic.

Roberts, an associate professor for the communication sciences and disorders early-intervention research group at Northwestern University, and her team received a four-year, $3 million grant to develop and validate a telehealth-based protocol to train speech-language pathologists to evaluate students’ risk of autism spectrum disorders. Using speech-language pathologists dramatically widens the pool of evaluators, as most school districts and Early Head Start centers have them, while a 2019 study found 84 percent of U.S. counties have no access to autism medical diagnosticians.

“I think it’s a unique opportunity to develop a potential new diagnostic pathway that addresses problems that were present before COVID, which is, you know, rural communities don’t have access,” to autism diagnostic services, Roberts said.

In Illinois alone, the autism evaluation wait time for children who have already been identified for general developmental delays through early intervening services has more than doubled, from four months before the pandemic to 9.5 months last summer.

“That might not seem like a long time, except these kids are 2 and that’s basically half or a third of their lives,” Roberts said. “We know that during the first three years of life, because of neuroplasticity, that’s when early intervention is so effective. And so they’re missing out potentially on five or six months of intervention because of the pandemic.

“It’s a nightmare, and it’s not a problem unique to Illinois. … Everybody has a backlog,” Roberts said.

About 85 percent of the time, parents of those diagnosed with autism spectrum disorders start to voice concerns about their child’s development well before age 3, according to the National Center on Birth Defects and Developmental Disabilities. But even before the pandemic, the center found only 42 percent received a developmental evaluation to diagnose the disorder by age 3, and 30 percent of children had not yet been formally diagnosed by age 8.

Support for mental health

For example, another of the grant-funded projects, led by Kathleen Lane of the University of Kansas Center for Research, Inc., will analyze patterns of behavior from elementary students internalizing and externalizing stress and anxiety before and during the pandemic, as well as patterns of referrals for special education eligibility for those students.

Lane plans to test an intervention, called “Recognize. Relax. Record,” which focuses on reducing students’ symptoms of anxiety and reengage students socially and academically to help students with and at risk of being diagnosed with emotional or behavioral disorders.

By the end of the 2021-22 school year, 1 in 4 schools reported a rise in special education students seeking mental health support since the pandemic began—higher than the share of schools reporting general student mental health issues, according to new data from the National Center for Education Statistics’ School Pulse Panel. The panel, which surveys schools about their operations during the pandemic, found older students hit hardest: In high schools, more than 30 percent of schools reported a jump in mental health supports needed for students in special education.

Among the other grants were: