In 2018, a study of 8-year-old children by the Centers for Disease Control and Prevention found that 1 in 44 were identified with autism spectrum disorder. Fast forward to 2023, and that statistic now sits at 1 in 36 children.
Dr. Wendy Burdo-Hartman, division head of the Division of Child Development Rehabilitation at the University of Illinois College of Medicine Peoria, said when she first started working as a neurodevelopmental pediatrician around 30 years ago, she remembers that prevalence number being around 1 in 150 children.
And as this prevalence rate continues to grow, so does the number of questions surrounding the disorder. What exactly is autism, and why are more and more children and adults being diagnosed with it?
Autism spectrum disorder is a behavior diagnosis. Burdo-Hartman said there isn’t one clear answer to explain this increased prevalence rate. However, she does think an overall better understanding of the behaviors associated with the disorder could be a contributing factor.
“We also know now that many children with genetic syndromes can also have autism,” Burdo-Hartman said. "They can have the behaviors and so we're kind of going back and looking at those children, too, and saying, well, really, they do fit the criteria and could probably benefit from the services that we provide a child with autism…that can increase the number.Need for services
Kelly Nimtz-Rusch is the executive director of the Autism Collective in Peoria that serves almost the entire state of Illinois. While the organization itself does not provide any formal autism diagnoses or therapies, Nimtz-Rusch said the agency serves as care coordination and family navigation, providing the connections and referrals necessary to get families and individuals to the services they might need.
These services range from helping individuals navigate a change of their insurance to locating support groups and providing referrals to specific medical providers that specialize in autism.
Last year, Nimtz-Rusch said the collective saw 760 new individuals and families in addition to its normal panel. And as the number of individuals with autism grows, the number of services available for them to access is shrinking, according to Burdo-Hartman.
“We don't have the providers to be able to provide therapies to the number of kids that we're seeing,” she said. "And so that is becoming quite a crisis across the country, but particularly here in central Illinois.
Oftentimes, Burdo-Hartman said she has to tell parents that they may have to wait upwards of 6 to 12 months before they can be seen for a particular therapy.
“And that's actually really harmful to the child because we know that the best thing is to get them in intervention soon,” she said.
From Easterseals to OSF Children’s Hospital of Illinois, many organizations are trying to hire therapists, but Burdo-Hartman said there just aren’t enough people going into pediatrics compared to adult medicine.
“There is a big need in the pediatric population for therapists and getting more programs up and running to be able to train those therapists,” she said. It’s a spectrum for a reason
While finding therapists is one challenge, diagnosing autism in the first place is another hurdle. Currently, there is no medical or blood test available to determine if an individual has autism. So, doctors often are looking for a certain set of behaviors during the diagnostic process. However, those behaviors take on a wide spectrum of possibilities.
“Anywhere from some stereotypical behaviors, some lack of how do you respond back and forth to another individual, pickiness with eating, sleep issues… to the extreme, where those children and adults really do not have any sense of how to communicate back and forth, in the way we understand them doing, and so don't share a lot and have very, very stereotypical behaviors, like a lot of rocking, spinning, not really giving any eye contact,” Burdo-Hartman said.
Burdo-Hartman added the number, frequency and severity of the behaviors also are factored that are considered through this diagnostic process.
“Whether it's level one, two, or three, and then level one, two or three also helps us understand how much intervention they might need,” she said. "So, one is the least amount of intervention, three, they need the most amount of intervention."
One person with autism is representative of that, meaning no two people with the disorder are going to present in the exact same way. This is one reason why Nimtz-Rusch hopes people will stop describing individuals on the spectrum as ‘high’ or ‘low’ functioning.
“One of the main reasons why autism is described as a spectrum is because it is so different,” she said. “And so…having people believe that autism always means certain characteristics, likely one, makes you believe something that's untrue for each individual, and two, I think sets you up, or the individual up for you to act in a certain way. And I think that what we need to understand is what are both the strengths and the areas where someone with autism may need help… and again, that's not unlike anyone else. Right? We all have strengths; we all have challenges.”
Diverse population
While pediatrics is the primary age range that autism diagnoses occur within, Burdo-Hartman said adults are much more commonly evaluated now.
“Probably because we have more awareness of it and what it looks like. And so as some of those adults come back for referral…they'll talk about this is how I was when I was younger and what I'm doing today and can certainly fit into those categories or those criteria,” she said. “So, we are diagnosing many more adults.”
Kelly Nimtz-Rusch of the Autism Collective said its services extend to not just adults, but seniors.
“We provide services for anyone, any age, for anyone seeking a diagnosis of autism or with a diagnosis of autism,” Nimtz-Rusch said. "So, we have kids who are 18 months old, and last month we had someone who was 63 years old… more and more of our clients are moving into that young adult, into adulthood, so we're seeing more and more that are in that age group."
Additionally, boys tend to receive a higher amount of autism diagnosis than girls.
“About four to one that boys outnumber the girls,” said Burdo-Hartman, adding when it comes to why that is, there is no current good medical explanation.
“There are some people that think girls do sometimes tend to be quieter. They tend to sometimes just have their little place and don't cause trouble, and sometimes the boys have more of the ADHD and can be more loud and have more of the visible behaviors,” she said. “So perhaps, maybe we aren't picking up on them as fast, but there may be some other reason genetically that might make them more predisposed to it. So, we just don't have the total answer on that one.”
Current public perception and future research
While there still is a large amount of research being conducted surrounding Autism Spectrum Disorder, the diversity of the population diagnosed with the disorder complicates the process.
“It's very different to try to study them compared to a population of, say, adults who have diabetes, or have congestive heart failure or something like that…you have so many different variables that you're like, what are we even looking at? Or what are we trying to get rid of?” Burdo-Hartman said.
Often, she added, research centers don’t have enough participants to prove that any one therapy is going to be beneficial or effective for the general population.
“Centers are combining and looking to do more collaborative studies across institutions and being able to put that data out there and get better treatments,” Burdo-Hartman said.
While research continues, both Burdo-Hartman and Nimtz-Rusch agree public perception of the disorder has shifted over time.
“We're at a point where it's not an unknown anymore,” said Nimtz-Rusch. “More and more, we're talking about autism…so that awareness is there, but really accepting is a whole different thing…being inclusive and accepting isn't about looking at something being different. It's simply accepting that we're all different, and not looking out for something to be different in someone else.”
Nimtz-Rusch shared an example of how someone can put this into practice.
“What does someone do when they're happy, right? They smile. They may clap their hands. Someone with autism may flap their hands," she said. "And being inclusive and accepting is when we no longer see that as being something different…that's all being happy…there's otherness, and then there's oneness. And inclusion is really about being the oneness.”
Part two of this story, which focuses on inclusivity practices within the classroom, will be linked here as soon as it becomes available.
