Kelly Weaver co-founded the Alexander Leigh Center for Autism in 2004 with only a handful of children and ran it out of her home.
Weaver was concerned there weren’t enough resources for the specific needs of her daughter, Gillian, who has what’s known as moderate autism.
At that time, it was believed that about one in 150 children had an autism diagnosis.
Today, the Centers for Disease Control and Prevention estimate that as many as one in 68 children has a diagnosis. To accommodate continued growth, the Alexander Leigh Center moved to a much bigger space in Crystal Lake and caters to about 35 students.
“The rates are higher, but there’s no change in the impact it has to a parent today,” Weaver said. “The rug gets pulled out from underneath your feet. Your life gets tipped upside down. You feel grief and loss, heartache, fear, frustration and anger.”
The recent CDC report cites a surge in diagnoses from just two years before when it was estimated that one in 88 children had autism. The CDC estimated that one in 110 children had a diagnosis in 2006.
Children with autism will show a lack of – or impairment in – verbal and nonverbal communication. They may be engaged in repetitive movements, make little or no eye contact, and be resistant to change in routine or environments. They may have unusual responses to certain stimuli such as noises, smells, textures, tastes or light.
Using the CDC rate and simple math with county enrollment rates, there could be as many as 511 local children with autism.
Enrollment rates for elementary school children provided by the McHenry County Regional Office of Education only includes public schools and the county’s Special Education District. The number does not include private schools or therapeutic day schools such as the Alexander Leigh Center.
Experts say it’s important to note the CDC report counted only eighth-grade children in 11 states – Illinois not being one of them – and used data from 2010.
The prevalence estimates “cannot be generalized to all children aged 8 years in the United States population,” the report says.
But what those numbers represent to some experts is the growing need for autism services, including medical, educational and social supports.
Gillian Weaver is now 15 years old and still attends the Alexander Leigh school, but her mother is worried about what happens when she can no longer provide for her only child.
“People need to be aware that this one in 68 is not going away even if they found a cure tomorrow and it stopped; there’s still one in 68 [people] that will live with autism for a lifetime,” Kelly Weaver said.
Crystal Lake-based Options and Advocacy’s Autism Program directs individuals and parents on how to access the resources that are available in the community.
“There is a lot of support; you just have to know how to find it,” said Winter Noe, autism program manager at Options and Advocacy.
Noe was quick to point out that an upcoming autism fair will do just that. The fair will be from 5 to 8 p.m. April 25 at Spectrum Support, 1575 W. Lake Shore Drive in Woodstock.
There will be vendors and other agencies who provide autism support or those looking for more information. The Alexander Leigh Center will have an open house and tours from 11 a.m. to 1 p.m. on April 27 at the school, 620 N. Route 31 in Crystal Lake.