Decoding the autism puzzle

Story by Laura Roddy

On a recent evening, Finley Andrews spent time playing at a neighbor's house on his west Wichita cul-de-sac. Then he doodled on an Etch A Sketch at home, writing I love you mom and dad and drawing music notes across the screen.

Fin is also a big fan of blocks and technology. When he wants to figure out how to get to the next level on a Mario game, he searches for the answer on YouTube. Fin is also the go-to guy in the neighborhood when an adult wants help with Angry Birds.

At the same time, though, Fin, who turns five this month, had only one sentence he could verbalize at school a year and a half ago: May I have some milk please?

Fin has autism, a developmental disability that causes problems with communication and social interaction. Repetitive behavior is also common. Autism is considered a spectrum of disorders because symptoms and impairment can range from mild to severe.

Today, Fin is much more verbal. His mom, Tobie, a photographer at Camera Angles, says it is through therapy that he has learned to put all his phrases together and rearrange them in order to communicate better.

Fin received his diagnosis at age three, after about six months of testing prompted by a teacher who had noted that his speech was delayed.

Difficult news

There were some telltale signs, but we didn't have anything to judge it against, said his dad, Brandon, who works for NexLearn, an educational software company. Their daughter Evan is three.

It seemed harsh to me, Tobie said. I was devastated.

For Brandon, it wasn't the answer he was wanting, but at that point, after months of testing and investigation, he felt more prepared than Tobie for the diagnosis.

You know your child. Some people are maybe scared to take those first steps to get their child tested  If you feel something is not right, then just push it. -Michelle Helton

It's a label, Brandon said. With any label comes stereotypes.  The diagnosis didn't change him  he's still the same little boy.

Brandon and Tobie came home and started educating themselves about the autism spectrum. They bought books and researched therapies and services. They found out about the state's autism waiver and got on the waiting list for therapy. They started at 430 on the list and are now at 101. Children are eligible for the three-year program from diagnosis until their sixth birthday.

Fin attends school at the Maize Early Childhood Center, and his parents pay for additional behavioral therapy, something that would be covered under the state's waiver program.

I think we are absolutely seeing progress, Tobie said. It's amazing how much he learns from other kids.

Tobie also said it has been helpful talking to other families that have children with autism or special needs.

Mom on a mission

Crystal Hinnen is one who has a few more years under her belt on the autism journey. It isn't unusual for Hinnen, who is the director of the Wichita Center for the Arts Preschool, to get calls and questions from friends of friends about coping with autism.

Her son, Dylan, who turns 12 this month, was diagnosed when he was 18 months old. At the time, she did not know anything about autism and originally thought Dylan might have a hearing problem.

No person with autism is the same, Hinnen said. We are on the severe side.

Dylan is nonverbal and needs supervision at all time, but he is affectionate. On a recent evening, Dylan horsed around with and hugged his stepdad Travis Hinnen, an artist, in their Conway Springs home.

It took a long time to get there, Crystal said. It took a long time to get him to look at my face.  My hope would be that he would be able to talk. My other goal is just that he would be able to function in society.

The Hinnens have started a nonprofit to raise money to build Dilly's Place, a no-bounds playground for special needs children and their families. Dilly is a nickname given to Dylan by his 13-year-old sister, Chloe. Since 2009, through taco feeds, bake sales and more, the group has raised about half of the $230,000 needed to build the playground. The land has already been secured through the city.

The reason why we even decided to do this is that it is so hard to take anybody with any kind of special need anywhere, Crystal said.

Need for services

Connie Erbert has spent her entire professional career working with autism, first in the school district and now at Heartspring as the director of the Community of Autism Resources and Education program and autism outreach. She works with 300 families on a consistent basis. It's the leading developmental disability, and it gets the least amount of funding, Erbert said. There is no cause, and there is no cure.

What we do know, Erbert said, is that early intervention is important and that there is a genetic predisposition in families.

We need more innovation of services, Erbert said.

According to the Centers for Disease Control and Prevention, autism affects one out of every 110 U.S. children. Erbert said about 70 percent of those are boys.

Michelle Helton, whose three-year-old daughter Kylee is autistic, encouraged parents to be advocates for their children and not let medical professionals be dismissive of their concerns, something she experienced.

You know your child, she said. Some people are maybe scared to take those first steps to get their child tested  If you feel something is not right, then just push it.

For the Andrews family, raising awareness about autism is also important.

I want to talk about him, Tobie said. I feel some people are afraid to ask me.  We feel open.

Autism CARE Walk

Saturday, April 14

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