CDC: The Autism Spectrum Disorder rate has increased. A Peoria-based collective aims to help ASD families
Following a 26-year career in education, Jim Runyon has spent most of the past two decades working with families impacted by autism.
As the Interim Executive Director and a board member of The Autism Collective, Runyon hopes new data on Autism Spectrum Disorder will bring open pathways to more resources and services. Last month, the Centers for Disease Control and Prevention announced the prevalence rate for ASD among children in the U.S. is now at 1 in 44.
“To kind of put that into context, what that means is: 20 years ago, the rate was 1 in 150. So you've had this tremendous increase in the rate over that 20 years,” said Runyon, who also serves on the WCBU Community Advisory Board.
According to Runyon, a combination of factors led to the updated prevalence rate.
“We really are diagnosing it better, we understand the disorder better and we understand it is a spectrum disorder. So that's part of it,” he said. “Experts are a little divided over whether we're actually seeing an actual increase beyond just a better understanding and better diagnosis. But the majority are tending to say, ‘yes,’ we are – worldwide; it's not just an American issue – that we really are starting to see a greater increase in the rate.”
Runyon noted ASD occurs across all racial and ethnic groups, and the U.S. rates are similar to those in other countries. However, an ASD diagnosis is four times more common among boys than girls.
The Autism Collective launched in 2019 as a joint initiative between OSF HealthCare Children’s Hospital of Illinois and Easterseals Central Illinois.
“We call it a collective because the idea is it's going to grow beyond those two initial founding members, and add other organizations who serve people with autism. There's lots of other organizations across the state that we are looking at,” said Runyon.
“Our tagline is: ‘Uniting experts and connecting families.’ That's really the goal of the Autism Collective: it’s to be able to bring all the experts together and then connect families, because that's really where they struggle, working through all the different systems that impact their lives.”
Runyon said The Autism Collective works to help families navigate a complex web of services and resources offered through public agencies.
“One of the unique things that we offer families is case management, and we do that through two different kinds of efforts,” he said. “We have a critical care nurse and two critical care social workers who really intake that family and then figure out what are their greatest needs, prioritize those, and then we create a care plan for them. Let's talk about how do we get what it is that you need.
“Then we kind of shift the family over to workers we call ‘family navigators,’ who then help the family navigate through those systems – be it education, or the health system, or the insurance systems – so that they get the help that they need.”
Runyon said by projecting off the CDC’s updated prevalence rate, he estimates around 7,000 children across central Illinois are on the autism spectrum, and most likely a similar number of adults.
“So it’s pretty significant, and because their needs are so great, the impact on the greater community is pretty large, too: trying to support these folks, find them the assistance that they need; for adults, trying to help them locate and retain work, locate and retain housing,” he said. “Across the United States, the estimate is (it costs) anywhere between $12 billion to $60 billion, of the impact of making sure that we meet the needs of this American population with autism.”
Runyon said he’s seen the understanding of autism evolve and improve over the past 20 years.
“Unlike a disorder where it's very simple, everybody has the same symptoms, everybody manifests the disorder in the same way, a spectrum disorder means that you can have people from one end to the other, very different kinds of people,” he said.
“It's a little bit of a cliché, but we use it all the time, and that is: ‘when you've met one person with autism, you've met one person with autism’ – because it may be someone who is incredibly intelligent (and) incredibly articulate, and then you can have someone who is completely nonverbal and really has significant intellectual disabilities, and everybody in between.”
He said there are signs parents can watch for to see if their child might have ASD.
“All people with Autism Spectrum Disorder kind of have the same three deficits,” he said. “They all are going to have a communication deficit of some kind; it might be completely nonverbal, but it could also mean that they can be incredibly articulate, but what they lack is the ability to read facial expressions or to understand emotions. So that's one thing that would be kind of common.
“A second one would be: almost all folks on the spectrum have some deficit in the area of social interactions. And then some people on the spectrum do kind of repetitive behaviors or have kind of unique interests. That combination is pretty common for people across the spectrum. But again, because it's a spectrum, you can have severities or less severe manifestations of those three kinds of deficits.”
Runyon said one exciting development from the recent CDC prevalence update is that for the first time it included a rate for adults.
“It is similar to the one in children – it's about 1 in 46, 1 in 45. But for those of us who are asked that question all the time, at least we now have something authoritative to say about that,” said Runyon, adding he hopes that opens a door to more public services for adults with ASD.
“In Illinois, we say you kind of fall off the cliff when you turn 21, because Illinois is one of the worst funders of developmental disabilities of any of the states,” he said. “(There are) lots of opportunities for children, because of early intervention program, which is a federal program run by the states, (and) the school system.
“But for adults, it really gets tough; (there are) lots of great developmental disability organizations around, but finding that kind of unique help for those folks across that (autism) spectrum, it’s much harder to do.”
Runyon said The Autism Collective continues to grow and add staff to meet a growing demand for their services. He said families interested in getting more information about their efforts can visit www.TheAutismCollective.org.