Leo Egbers wasn’t meeting some developmental milestones at nine months of age. His mother, Viviana Egbers, said she wasn’t overly concerned at that time.
“His symptoms didn’t scream autism,” said Egbers, whose primary concern was a speech delay. Their pediatrician sent a referral to Child and Family Connections of Central Illinois for an early intervention evaluation.
Then, they waited. By the time Leo received an initial evaluation, he was 20 months old.
A few months after his autism diagnosis, Leo drowned in a pond behind his house.
Egbers said she wished she had been made aware sooner that her child was autistic and what behaviors are commonly linked to the neurodevelopmental condition. For example, Egbers said she didn't learn until after her son's death that his fixation with water was a marker of autism, and that children with autism might wander after objects of interest.
"There's certain things we didn't know to look out for that I still [think] I wish I would have gotten a warning, but it just never came," she said.
Waiting lists
Long waiting lists to receive autism services are common across Central Illinois and the Midwest, said Elizabeth Lowery, a board-certified behavior analyst [BCBA] and Bartonville site director for the Normal-based nonprofit Lifelong Access. She said the long waiting times are due to a lack of providers.
Dr. Samina Yousuf, a general pediatrician at OSF HealthCare St. Joseph Medical Center in Bloomington, said a recent statistic for Central and Southern Illinois places the specialist-to-child ratio at 1 to 47,000. Yousuf said those qualified to make an autism diagnosis are limited to developmental pediatricians and speech therapists as members of a multidisciplinary team.
Lowery noted insurance companies do not cover Applied Behavioral Analysis [ABA] if the autism diagnosis was provided by a school psychologist.
Compounding the problem for families is that insurance companies are setting a three-year cap on the validity of the diagnosis and discontinue ABA until a new diagnosis is administered, said Lowery, regardless of whether they were currently receiving ABA.
“And whenever a waitlist could be two to three years long, you basically have to get a diagnosis and then immediately get back on the waitlist to do the same exact test that your child just received to get a diagnosis they already have again, or else their insurance is not going to pay for services for your child’s autism," Lowery said.
Endless hoops
Egbers is not the only parent in Bloomington that faced hurdle upon hurdle in obtaining a diagnosis for her child.
Erica Larkin has two children with autism. She said her daughter was two and a half when they started looking for help. Larkin said her daughter's pattern of speech was concerning, despite her good vocabulary, and she'd noticed her play style differed from her friends, yet Larkin said her concerns went unheard.
“Finding a doctor who would be willing to take what I was saying seriously was difficult. She was on her best behavior every time we went to a doctor's appointment, and our pediatrician initially wasn't well versed in early intervention and kids who aren't neurotypical,” said Larkin.
Yousuf said autism awareness is increasing among pediatricians, and the range of developmental milestones to consider is wide. She said for pediatricians who've historically taken a wait-and-see approach, it's a work in progress.
“However, now the wait-and-see approach, we know, does not really work well for our children, because there's this neuroplasticity window, which is under three," Yousuf said.
High demand and limited availability of physicians who can diagnose autism is driving prolonged wait times, and even in the best cases where children are diagnosed by a multidisciplinary team like Easterseals, the wait time for services post-diagnosis is also very long.
“So if you were two when you were referred to Easterseals, you may be three and a half before you are able to be seen, and that's 18 months of a three and a half year old child. It's half their life where they didn't receive the appropriate therapy,” Yousuf said.
Glimmers of hope for families
Still, Yousuf said there's reason for hope. She said OSF is increasing services for families with autism. In 2025 over 20 pediatric residents from Children's Hospital of Illinois in Peoria and Yousuf were trained to diagnose autism in children under four years old using a screening tool called STAT. It's less time consuming than using the traditional model, which can take several hours. She said she's used the tool to screen about 60 children since last summer.
“So this is something that maybe more residency programs are trying to incorporate, so that when their pediatricians graduate, they would feel comfortable dealing with people with autism, children with autism, and using this basic screening tool to diagnose,” said Yousuf.
One resource Yousuf hopes families will use is autism pathways through Children's Hospital of Illinois. It's a free service that provides comprehensive information for every stage of the autism diagnosis.
“It could be about a new diagnosis for any age, children or adults, it could be after you get the diagnosis. What do you do now?" Yousuf said.
The second annual Autism Awareness Expo is scheduled for 4-7 p.m. Thursday at Illinois Wesleyan University's Shirk Center. The expo, hosted by Lifelong Access, will feature community resources and supports for families navigating the challenges of disabilities.
Viviana Egbers wants parents to have access to information she and her family wish they had before losing their son.
“It's very important for us that this doesn't happen to anyone else," she said.
