Project Aims to Reduce Wait Times for an Autism Diagnosis in Illinois: ‘Is There an Alternative Model?’

By: Atarah Israel and Micah Sandy

When Kailani was 2 years old, her mother, Marquita Kinds, began noticing differences between her and other children.

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“I had concerns, I addressed it with the doctor, and the doctor was like, ‘Oh well, she’s a young 2,’” Kinds said. “But me being the mother I am and the teacher mindset, I’m like ‘no, something is not right.’”

As a teacher for young children, Kinds was already familiar with the signs of developmental delays. Through a colleague, she found a Northwestern University program called Reduce the Wait. The federally-funded project aims to provide evaluations in the hopes of finding faster ways to diagnose autism in young children.

The project also provided Kinds with a supportive community.

“With Northwestern, they are constantly in contact with me, even after we’ve had the evaluation done,” she said.

For many families, finding that kind of help is difficult, with evaluation wait times a major barrier.

During the COVID-19 pandemic, Illinois wait times for child autism evaluations tripled from six to 18 months. That time dropped down to one month thanks to Reduce the Wait.

With $3 million in federal funding, researchers are studying how to expand the types of professionals who can issue a diagnosis. Currently in Illinois, only physicians and clinical psychologists can do so.

“The way to reduce the bottleneck would be to say, ‘Is there an alternative model in which we can bring professionals into the fold and change who can diagnose autism?’” said Megan Roberts, a professor in communication sciences and disorders at Northwestern.

Some of those potential professionals include speech pathologists, Roberts said.

Early signs of autism in young children include difficulty understanding other people’s feelings, highly restricted interests, becoming upset by minor changes in routines or surroundings and performing repetitive behaviors.

Alana Glickman, 31, a speech pathologist with Reduce the Wait, said she struggled with seeing autism traits in herself before a psychiatrist recommended that she receive an evaluation when she was 17.

“I was kind of fighting against him saying that I didn’t think the diagnosis fit me, and then he eventually kind of agreed with me and said, ‘you’re too charming to be autistic,’” Glickman said. “I think that would cause some people to roll their eyes to hear that because being autistic and charming are not mutually exclusive, of course.”  

By the project’s end, Reduce the Wait will have worked with more than 1,000 families with children aged 3 or younger. Of those families, 40% are Black and another 30% identify as Hispanic/Latino.

Mary Donner, a licensed psychotherapist, says that for a long time, autism signs have been studied in White male children only, which is why serving communities of color is important.

“People who are not young White boys often get autism diagnosis far later in life,” Donner said. “The diagnosis usually comes when a child has been through a few series of burnouts. So, by the time people get to that point, they could have had different accommodations and aid that could’ve prevented that whole sort of breakdown.”

 T.J. Gordon, 36, was first diagnosed with autism as a child and then again in 2015. Three years later, he co-founded the Chicagoland Disabled People of Color Coalition to raise awareness about autism acceptance.

“I could be ostracized because the way I speak may be different,” Gordon said. “I’ve been called professor, boring because the way that I pronounce my words.”

On social media sites, pages are flooded with adults who are navigating their own autism symptoms. They exchange advice about masking and discuss the validity of self-diagnosis.

Some experts say the average cost of an evaluation without insurance ranges from more than $1,000 to $5,000.

Gordon, who is also a researcher at the University of Illinois-Chicago, says even with insurance, not all providers fully cover evaluations.

“Let’s cut down on the wait times for getting the appointment to get diagnosed,” he said. “I think those are the main battles we should worry about.”

Earlier diagnoses could play a major role in how adults with autism manage and see themselves.

For families like Kailani’s, getting help early was a key to setting her up for future success.

“I feel like once you get that help early and you know, you get the support and resources and you use them, then I feel like the children can navigate better and they have the support they need to, you know, just make it better in life,” her mother, Marquita Kinds said.   

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