Autism rates have risen sharply across the United States over the last two decades, but services and support available to those on the spectrum have not kept pace.
In this Sound Ideas feature, GLT looks at how families in McLean County seek help for their children with autism and how those kids strive for independence as they become adults.
“I’m ready to go Easter Egg hunting,” Kevin Innis of Normal declared.
The 6-year-old boy does just that as mother Monica Innis watches.
This, however, is not your typical Easter Egg hunt. A relatively new Bloomington business called We Rock the Spectrum hosted the event with a limited number of children and what's called a sensory-friendly Easter bunny.
It was owner Becky Clark's idea.
“Some bunnies, they have the big heads on them and they are a little bit freaky looking to the kids,” Clark said. “So we specifically bought a costume for her that did not obscure her face so they could see her and see her eyes. We just wanted her to be low-key and play with the kids.”
Monica Innis said her son does well in school but social settings and highly charged sensory environments can overwhelm him. That's exactly what We Rock the Spectrum is not.
“He goes to a mainstream classroom, he just gets some accommodations to help him out,” Innis said. “We do love having a place like this to come where we don’t have to say ‘Sorry.’”
That's a common refrain for parents of children on the spectrum. Dezi Knipe of Normal said she wouldn't think of taking her 6-year-old son Reece to a typical Easter egg hunt.
“We couldn’t go to the big one at the Corn Crib,” Knipe said. “(There’s) too many kids. There’s too much going on. It would lead to a meltdown. Here we are just hanging out and relaxing today.”
Jessica Janicki of Normal has two adopted children, ages 4 and 5, Amber and Chance, who have sensory sensitivity. Janicki said large crowds and loud noises are not good, though she added Chance can better manage a scene when he's given structure. If not, Janicki said, there's no fighting it.
“No, we typically just pack up and leave,” she conceded.
Janicki said that's why she likes taking her kids to an indoor playground that caters to children with special needs but is welcoming to all kids.
“They understand when your child is having a meltdown, no one is looking at you,” she said. “They are all coming to offer you help which is really nice.”
Becky Clark opened the gym in January. It was open for a brief time previously under a different owner.
Clark lives in suburban Woodridge and works as a software developer in downtown Chicago. She took her 5-year-old son Eli to a We Rock the Spectrum in Palatine last year and thought it was a perfect place to host a birthday party for him.
“I just thought so many other moms who have kids with special needs or whose children are on the autism spectrum that they must feel the same way,” Clark said. “They can’t bring them to your regular birthday parties that all of their friends are inviting them to Chuck E. Cheese and things like that. It’s too loud of an environment. It just ends up being very stressful for the parents.”
There she learned the Bloomington franchise had recently closed. So she bought it and now she makes the 200-plus mile round trip commute twice a week.
Clark said the more controlled environment has benefited her son, but the gym's mission is to be welcoming to all.
“We have a kid (visit) who was nonverbal and I think they just feel a sense of acceptance to be in the gym because nobody is saying they don’t belong here,” Clark said.
Autism Rates Rise
In less than a decade since the first We Rock the Spectrum opened, the concept has grown to more than 75 locations in 23 states and five countries.
Whether there are more children with autism than there used to be is not clear, but the number of children diagnosed has increased dramatically in recent years.
A group of volunteers formed the nonprofit Autism McLean in 2002 to educate parents and the community about the disorder few knew much about, perhaps because autism was considered extremely rare.
Board member Chuck Hartseil noted the autism rate at the time was about one in 10,000.
“It was just beginning to come on the scene,” he said.
Hartseil said in less than two decades, those diagnosed with autism has grown to 1 in 59 people, a near 170-fold increase.
Autism McLean board member Kari Sandhaas helped form an education campaign called Autism Friendly Community to create awareness and acceptance. She said the increase in autism has raised awareness on its own, but she suggested testing your own tolerance.
“Imagine a family with a child with autism that has a meltdown in a grocery store,” Sandhaas said. “Do they judge that parent or do they extend some understanding to that parent?”
Autism McLean lives entirely on donations and fundraisers, no state or federal dollars. It's sought to raise awareness by distributing sensory bags to local museums and other points of interest. The bags contain noise-canceling headphones, fidget toys and visual communication cards that help children verbalize their thoughts when they become distressed.
None of this suggests parents can or should entirely shield their children on the spectrum from challenging environments. Prominent activist and author Temple Grandin said recently at Illinois State University she's concerned an autism label stigmatizes children and that some parents stunt their child's social and emotional development.
“Because I’m seeing parents become overprotective on having their kid learn the most basic, basic skills like just learning how to stop, learning how to budget money,” Grandin said.
Grandin wrote the book "Emergence: Labeled Autistic," which challenges assumptions that someone on the autism spectrum can't live a productive and fulfilling life. Her life story became a critically acclaimed HBO feature film starring Claire Danes.
Grandin spoke to a gathering at ISU to mark Autism Awareness month. Her message to parents: focus less on what their children can't do and more on what they can, and lay the groundwork early to help them find success that will lead to a life of independence.
“We need to start that training for working at around age 11 with dog-walking jobs and church volunteer jobs, maybe playing cards with the residents at the old folks’ home or something like that,” Grandin said. “Things that we can find in the neighborhood.”
Children on the autism spectrum grow into adults on the spectrum; it's not something you outgrow. But Grandin said many people with autism bring unique characteristics that can help them thrive in certain work environments.
They tend to be highly detail oriented, which is a critical skill for certain tasks. They follow directions precisely and they don't tire of repetitive tasks.
Alex Moody of Normal has found his niche in the insurance business. He works at Country Financial in Bloomington in its workers’ compensation claims office.
“My job here at Country is to process the bills. I enter information on the computer. I print the checks, then I stuff them in the envelopes so they can get to where they need to go,” Moody said in describing his job.
Moody is 32. He has worked at Country since 2011 and said he enjoys the job.
“It fits my job well because I am good at working with the bills,” he said.
Moody works 8 a.m. to noon Monday through Friday. He said the only time he struggles is when there are loud noises nearby.
“When we moved here (a second time), we were over by the ice machine,” Moody said. “That was pretty loud and that made it difficult to concentrate.”
When that happens, he breaks out a sound machine. It mimics the ocean and other calming sounds that put him more at ease.
“It helps with blocking the noise as much as possible,” Moody said.
Roberta Brooks, the supervisor for workers’ comp claims at Country, is Alex's boss.
“He’s very conscientious about his work, very reliable,” Brooks said, adding that Alex rarely misses a day of work. “When he does I get nervous. But Alex is wonderful.”
Brooks said the staff treats Moody just like they do all coworkers. She has to occasionally remind herself of one of Alex's traits that's common in those with autism. He takes instructions literally.
“I have a bad habit of sometimes using some jargon, some slang of sorts and Alex will pick up on that and he will question me further,” Brooks said. “I have to remember, Alex, he’s taking me very literally and I’m very conscious of that.”
Moody came to the insurance company through its Opportunity Country program. It works with Marcfirst in Normal to help find employment for those who have developmental disabilities.
In the 11 years since it was formed, Country has brought in Marcfirst clients for internships with the goal of hiring them when the internship is done. Country has hired each one of them. Alex is one of five hires who still works there.
Angela Allen oversees that program as Country's Diversity and Inclusion Program Manager.
“Regardless of someone’s differences, we are open to working with people. It’s really about creating a space where we can all get to know each other and work and do our best jobs here,” Allen said.
Allen oversees inclusion training for Country's 3,000 employees, about 1,800 of those are in McLean County.
The training isn’t mandatory, but she said the company “highly encourages” it. She said the training rate is nearly 100 percent. It's a two-hour course for most. Managers take four hours.
Partnering with Marcfirst, Allen said, has done more than just provide job opportunities for its clients. It has also helped foster a more diverse workforce at Country.
“The differences of understanding, the differences we bring help us to work better together,” she said. “I really think creating an inclusive environment and having an understanding of what that really means, I think we all benefit from that.”
While County Financial and other employers have opened their doors to developmentally disabled employees, that case is more the exception than the rule.
Marcfirst CEO Laura Furlong noted nationally one in 10 people with intellectual and developmental disabilities finds work. For people with autism, the number is even lower.
Barriers to Work
Those on the spectrum face barriers before they even get the job. Marcfirst tries to help clients find employment suitable to their skills.
“People who are able to understand systems, especially when something is done in a consistent way, finding tasks in which that person is able to do things without a large amount of judgment is often a good fit,” said Anne Taylor, Marcfirst's vice president of customized employment and grants.
Then there's the job interview. Marcfirst will sometimes sit in to reassure the interviewee and interviewer.
“Our main goal is to make sure that person is able to show their best selves,” Taylor said. “In order to do that, having that person at the forefront and then being there just to facilitate if there is any point where the question may need may be something that needs more explanation.”
Another barrier for those on the autism spectrum is transportation. Most can't drive, and public transportation isn’t always readily available for some.
Kari Sandhaas with Autism McLean said getting behind the wheel requires a level of coordination and anticipation. That, she said, can be difficult to process.
“You can’t really predict exactly what the others (drivers) are going to do,” Sandhaas said. “Are they going to follow the rules of the road? People with autism follow rules exceptionally well, but they expect others to do as well.”
Marcfirst boasts it has been able to find work for 60 percent of its clients who are seeking employment. Chuck Hartseil with Autism McLean said most jobs those with autism land are entry level and sometimes non-competitive, through what's called job carving, assigning specific and limited tasks that offer low pay and little opportunity for advancement.
“There are parts of the job that individual could complete, but not the whole job,” Hartseil said. “Is a business willing to look at that and analyze what they are doing to make those kinds of decisions and would you then make the same rate of pay if you reduce what type of work that individual is going to do?”
Hartseil's son Austin is 22 and has moderate to severe autism. He's been able to find his own employment niche through a family business as a candle maker.
“My wife jokes with him (saying), ‘If I’m going to do this, we’ll make it Jackie’s Candles.’ (He replies) “Oh no, it’s Austin’s Candles,’” Hartsail said. “He has taken that ownership and pride in regards to that and that is phenomenal for him.”
A developmental disability can be tough on parents as well as the child as everyone seeks ways to navigate a challenging life. Janicki said that's the good thing that higher autism rates and awareness have fostered.
“There’s a lot more,” Janicki said. “There’s a lot of support groups and I think Facebook leads to a lot more moms connecting with kids with social needs. I know there’s a lot of support groups in the churches in the area as well.”
Above all, parents of autistic children say they want understanding.
“That awareness and people accepting, that needs to keep happening and people need to know it’s out there and know how to help and not judge the differences that come with that and the different needs that come with that,” Knipe said. “I’m glad it’s out in the forefront more now that it has been in the past.”
Clark said she has seen her son blossom since opening We Rock the Spectrum and having a regular playground home that specifically serves his needs.
“I just want to raise them with the awareness that everybody is different and that doesn’t make him, I don’t know, bad in any way,” Clark said.
Clark said she's working to make the business a clearinghouse of resources for parents to find out where they can get help for their children.
She added if We Rock the Spectrum succeeds in Bloomington, she might look to add another location in the Chicago area.
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