Autism Awareness Day highlights urgent need for timely screenings, therapies

CHICAGO - Ahead of World Autism Awareness Day on Tuesday, FOX 32’s Elizabeth Matthews looked into a problem for many families with children with autism.

Waitlists for screenings, evaluations and even many much-needed therapies - this extra time can be detrimental to the child who needs these services.

Six-year-old Ezekiel is really into drumming. His younger brother, 5-year-old Zion, is the snuggly one and enjoys coloring. Both are on the autism spectrum.

"We’re fighting," said Bianca Thomas-Eduok, mother of Ezekial and Zion. "We’re trying our best to fight as much as we can. It’s not an easy fight, but we cannot give up on our kiddos."

The fight is for help and critical services to support kids like Ezekiel and Zion.

"Zion was almost 8-months old, and it was to the point where he was almost phased out of early intervention. I think Zion might only get two months of early intervention," Bianca said.

That’s when he was 3. He’s now 5, is non-verbal and has been diagnosed with low-functioning autism and still, they’re in limbo.

"I had to be my child’s advocate and I had to also be the one to get him on waitlists, get him the services that he needs. Until this day, I am still on waitlists for some of those services - for speech, for occupational therapy, social behavior. Waitlist after waitlist after waitlist," Bianca said.

She says she had no one guiding her following the diagnosis, but learned quickly from evaluation to therapy it was a waiting game.

For the families that need these resources, the timing of the screening and evaluation is crucial.

"Absolutely. It helps us get kids into our center sooner," said Dr. Citlaly Gonzalez, a clinical psychologist at Easterseals DuPage and Fox Valley.

Easterseals offers pediatric services for children and adolescents, including things like speech, physical and occupational therapy. They serve about 1,000 kids at their three locations every week.

"Pediatricians are supposed to do screenings twice before a child is 5, and then pediatricians can go ahead and refer kids for a full evaluation," Gonzalez said.

Gonzalez said for many families, you have to wait several months for those evaluations, especially for those in underserved communities, those that don’t speak English or are on Medicaid.

She said there are not enough trained clinicians at hospitals and doctor's offices to do the tests, and during the pandemic many families put off routine wellness checks with their pediatricians. That's often the first step to a diagnosis.

So what can parents do other than wait? Be an advocate, Gonzalez said.

"Even without the diagnosis, if we know that a child has speech delays, we can start them with speech services. If we know a child has difficulty with sensory processing or motor planning, we know that we can get them started with occupational therapy," Gonzalez said.

The State of Illinois offers early intervention for ages 0 to 3. It’s a free, in-home service, but even that has a wait time depending on where you live.

Currently, Easterseals are scheduling evaluations one to two months out. Another option is a virtual evaluation.

"One in 36 children will have autism, but there’s a much bigger number of children who screen at-risk in primary care and are in need of an evaluation, and that’s what we do," said Kayla Wagner, founder of the virtual clinic As You Are.

"We provide evaluations to parents exclusively using telehealth appointments when they suspect that their child has autism," Wagner said.

In three separate 30-minute appointments, trained clinicians observe the child and use software to define a diagnosis.

"Doing this using a completely virtual paradigm allows a window into that child that otherwise may not be accessible. We see children in their natural environment in the comfort of their own home where they’re exactly who they are, and we can watch, our physicians can observe and provide the most appropriate diagnosis that’s needed," Wagner said.

As You Are accepts most insurance and Medicaid, and while still a new concept, Wagner said they have a 94% accuracy rate and are booking appointments only one to two weeks out.

Gonzalez said there is more work to be done when trying to shorten these wait times, like physically getting in all communities and to kids that are often being missed.

"This evaluation, this diagnosis, opens up a lot of doors. It allows families to be able to advocate for their children in school and in the community, and it really helps our kids be able to understand themselves a lot better," Gonzalez said.

"Regardless of where we live, regardless of what our income is, make it easy for all," Bianca said.

Bianca and a group of advocates are heading to Springfield to celebrate Autism Acceptance Day. They will hold a rally in the state rotunda and call for access to education, employment and healthcare.

For more information on that event and other organizations, visit the following resources:

• ChicagoAutism.org
• EastersealsDFVR.org/autism
• AsYouAre.com
• Chicagoland Autism Connection Advocacy Day 2024