When her child was diagnosed on the autism spectrum, Kristin Baade felt very alone.
…Baade [was] smiling recently when [she] joined a group of parents and professionals on a tour of an autism center organizers say can serve as a model for another one in Fort Dodge.
Founded in August 2013, Opportunity Village’s Children’s Autism Center in Clear Lake began with a simple family support program, providing education, information and support to parents, said Services Director Jim Aberg.
Today the center has 10 staff, including two board-certified behavior analysts, and offers intensive one-on-one therapy, rooms of toys, activities and sensory items, and a resource library.
The next phase of the plan, Aberg said, is to repeat the center’s success at a location in Fort Dodge.
The center has a wide range of strategies for kids of all ages, because children with autism are all so different, said Dr. Jesse Logue.
People think they know what autism looks like, but some on the spectrum defy expectations, Logue said.
“If you know one kid with autism, you know one kid with autism,” he said. “We are not treating autism. We are treating an individual’s symptoms.”
In fact, what was once considered three different disorders are now all classified as part of the autism spectrum, Logue said.
Logue and his wife, Dr. Lauryn Toby, are the BCBAs for the center.
People with autism …often have trouble with social, emotional and communication skills. Kids on the spectrum also may not play “pretend” games.
The Clear Lake center is located in a former housing cottage owned by the Village. Now, every room serves a different function to help staff learn how best to help the kids who come to them.
The two favorite rooms in the center are the ones with unique tactile and visual simulation.
“Our kids absolutely love this,” Toby said as she showed off the sensory room complete with a hammock-like swing, trampoline, ball pit, and something she called a squeeze machine.
“Kids with autism, they really have these sensory needs,” she said. “So a lot of them will communicate for swing, communicate for jump. … They can come in here to take a break and jump for 10 minutes. They like the pressure of the balls.”
Another room has lighted, bubbling water tubes and glowing loose fiberoptics.
Kids with autism often react differently to stimuli. Some can get overstimulated easily by the ordinary lights and sounds of daily life, while some are under-sensitive, and may ignore pain. Coming to the light room can be a great way to relax and try new stimuli.
But kids aren’t brought there to calm them down if they act up, Logue said.
“We don’t want to inadvertently teach the kids that by having problem behavior you get to come to a room like this,” he said. “So we try to get in a scheduled cycle of breaks.”
“Or teach a child to ask for this,” Toby said. “If they appropriately say ‘I want to use the light room,’ …we’ll take you right in.”
Kids usually start in a room with ordinary toys. Not only does it help them get comfortable, this lets staff see what the child is interested in, Logue said. Then the toy can be used as an incentive later.
The therapy happens in a very plain room, where there are no distractions for children to grab.
…Staff bring toys on a cart, and put them away in a closet. Children learn pretty quickly that toys will come back at a set time for breaks.
…Toby and Logue are trained in Applied Behavior Analysis treatment. When Logue worked for the National Autism Center, he helped with a national standards project that analyzed all the research on autism to find which treatments were effective and which weren’t.
“ABA is the gold standard for treatment,” he said. "It’s breaking down behaviors into their basic components, and then teaching them stepwise.
“For example shoe-tying. We will break down every step of shoe-tying, then we will teach every one of those steps until they have mastered it. Then we collect data to inform our decisions. Have they mastered this skill? Are they ready to move on to the next skill? Or if they’re getting stuck at a certain place, what can we modify about the environment or the way we are teaching them to make sure they’re acquiring this skill?”
Not everyone needs one-on-one treatment, Logue said. Some who come to the center only need one session a week, while some can use three. There are also higher-functioning, older students who come in for a social group, to practice social cues.
Part of the center’s goal is to tailor every child’s treatment to their needs.
Everything in the treatment is data-based, Toby said, which means they have to keep records and show what is working. The kids are tested throughout treatment to chart how they grow.
“It’s the accountability factor,” Logue said. “We don’t want to make decisions based on ‘I think they’re doing better’. We have data to show they’re doing better.”
Learning to communicate may help stop unwanted behaviors.
…“We work very early on communication,” he said. “We’re trying to teach these kids to sit for extended periods of time, and then ask for a break when it’s appropriate. Because we’d rather have you ask for a break than have to use behavior to get the same break.”
Communication is huge - many of the kids who come in are nonverbal, Toby said.
If they don’t talk, Toby said kids can learn to communicate other ways, by pushing a button or using an app on a computer tablet or using picture cards.
“We always pair it with language. When they hit the button and it says ‘phone please,’ ‘Great job asking for the phone’ or something like that,” she said. “A lot of those kids you will start to see as they develop, they get more and more words out.”
Seeing ABA treatment in this part of the state is rare, said Baade.
Not only does she have a child on the spectrum, Baade is also a community support team leader with Opportunity Village in Fort Dodge.
“I was reading any book I could about autism. ABA was talked about a lot, but it was always like - not in the Midwest, it’s not going to happen. It’s something unattainable,” Baade said.
In fact, there is real a shortage of autism diagnostic and behavioral intervention services of all kinds in Iowa, said Rachell Swanson-Holm, family navigator coordinator with Child Health Specialty Clinics.
That’s why Aberg wants to follow the model that worked in Clear Lake to build more centers around the region, starting with Fort Dodge.
“I made a commitment,” said Aberg. “I said whatever we develop here, I want to be able to reproduce in other communities.”
Aberg said parents and professionals in the Fort Dodge community have asked for the center.
“We had our first meeting Sept. 21 at the public library,” Aberg said. “We had a good representation of the community. It was pretty resounding that, ‘Yes, we want to have you down here.’”
It would start with family support services, gradually growing to more intense treatment.
The center may also benefit from telehealth offered through the Clear Lake center.
Aberg hopes to have a family support position hired for Fort Dodge in February or March, though the timeline is still pretty rough.
…The goal in founding the center was to provide hope for parents who may feel overwhelmed, Aberg said.
…“Just having that wraparound support” is vital, Baade said. “You feel very isolated and alone when you have a child - I feel like anyways - on the spectrum.”
Toby said she’s seen great success.
“Language development is amazing to see over time,” Toby said. "If you’re there for day one, when a kid comes in the very first time who maybe is tantruming for the entire session and has no way of communicating to you what they want. Then sometimes in as little as a month, I walk into a session and this child is sitting in a chair pushing a button to ask for a snack.
“In a short amount of time you gave that child a voice. … And you see how happy the child is.”