Chances are you know a child with autism. In Utah roughly 1 in 58 kids are on the autism spectrum. And this likely won’t surprise you because in recent years a lot has been done to raise awareness. But knowing these kids are out there, that’s just the first step. There’s a growing need for training on how best to work with these kids.
Ethan and Jaron Wunder are 10 year old identical twins with autism. They live in Utah county, go to a public elementary school and they have a unique way of describing what's going on in their heads.
“It’s just like there’s another brain and your normal brain tries to fight back on the autism brain," says Jaron.
It's kind of like a tug of war. The "autism brain" is more reactive and sometimes, when the "normal brain" is taking a break, the autism takes over.
That’s when they act out in ways that can seem stubborn or immature. Which often happens at school.
“I’m at the school multiple times a week," says Jenny Wunder, the twins mother. "I’m quite a fixture at the school, I don’t know if they appreciate it or not.”
Over the years the Wunders have had good and bad experiences with school. Jenny is quick to point out the good but she also has to put in a lot of extra work just to make sure Ethan and Jaron can get through a typical day.
Jenny is constantly checking in with teachers and administrators. She also volunteers in the classroom a lot and yet there are still moments where things unravel.
“School’s only been in for about a month and I’ve already been called down to the school," says Jenny.
One thing you should know about Ethan and Jaron is that they are rule followers, they don’t like when something seems unfair or when recess equipment is being used incorrectly. And recently, that’s exactly what happened. Some kids were using the foursquare court at school without the correct amount of players.
“And in their mind they thought ‘We have more players we should be on this,’" says Jenny. "And they got into a little tussle and caused quite a problem enough that I had to get called down.”
Jenny was frustrated. There seemed to be a lack of supervision during recess. And despite her efforts it didn’t seem any adult present knew the right way to respond to the twins. This is often how the story ends. But then, the school administration surprised her.
“They stepped right up and they agreed to have a conversation. We talked to the boys and we came up with a solution," Jenny says. "They made my boys feel like they were helping and finding a solution and helping their friends and helping the kids in the whole school.”
Unfortunately, for families with children on the autism spectrum, responses like this are often the exception rather than the rule. And a big part of that is because a lot of educators lack the training.
Many teachers, like most of us, don’t know how to act when they see a meltdown or a fight break out. It’s easy to label the kids as rude or selfish without getting to the root of it.
But getting to the root of it is exactly what they're trying to do in a classroom at Utah Valley University in Orem.
Jennifer Call, a professor of autism studies, pulls up a video to play for her students, most of whom are training to be teachers.
The video shows a child with autism kicking and screaming in a parking lot. It's hard to watch but every face in the room is focused.
"It goes on for another three or four minutes until she picks the kid up and puts him in the car," Call says, pausing the video.
The class discusses what was motivating that behavior. Was the kid trying to escape something, seek attention, do they want something?
Then, the conversation transitions to first hand experiences these students are having. Most of them teach part time as part of their autism minor.
One teacher-to-be says a kid she's been working with has been throwing a fit every time they work on the class calender. The class as a whole brainstorms what might be going wrong and what can be done.
This kind of approach isn’t just the focus of a single class, it’s the focus of the entire building the class is in. Brand new this school year, it’s called the Melisa Nellesen Center for Autism. It’s got autism right there in the name.
“The name autism, that means you own it. If you’re putting the word autism that’s what you do and you’re saying this is what we do and we want to do it well," says Teresa Cardon, the director of the center.
The Center for Autism is the first of it’s kind in the state and Cardon's vision for what they do here goes far beyond UVU students.
The center is meant to be a training hub for school districts all across the state. Each year ten districts will be chosen to have in-depth coaching sessions.
"The goal is so parents can really feel confident sending their child to any school district in the state of Utah and really have a great experience," says Cardon.
Cardon also points out that here you don't hear the word "cure" very often, if at all. Their research is focused on behavior and effective instruction.
"Autism is a part of a person, it’s part of who they are. It’s not necessarily a horrible, bad, awful thing it’s just a different thing," Cardon says.
Because there is a such a wide spectrum, the idea of a cure just doesn't make sense, Cardon says. But what does make sense is a community that can learn to respond to these kids differently. To worry less about whether or not they’ll get better and more about what it will take to make their day-to-day experiences a little better.