Raising Awareness as Autism Diagnoses Increase

By Beacon Staff

Jacob is playing on the jungle gym at the park in Kalispell. He is 10 years old, with dark hair, light blue eyes and the sweet roundness to his cheeks that will soon disappear into the sharper angles of an adolescent face.

Wearing running shoes, shorts, a T-shirt with the name of one of his favorite video games, and a hooded sweatshirt covering his head to protect him from the sun, Jacob is in constant motion at the playground, vacillating between the jungle gym and the conversation he’s having with the visitors his mom brought along.

Jacob is extremely intelligent, spouting off facts about space and time dimensions, and talking through the favorite parts of the video games he enjoys; if he gets stuck on a descriptive word, he starts singing the melody played in the background of the game during that part to help explain.

When asked if he likes anime – Japanese animated productions – Jacob drops his head and paces back and forth in the spring sunshine.

“Jacob, did you hear her question?” his mother, Summer, asks.

“Yes,” Jacob replies, looking up earnestly. “I just didn’t know what to say.”

Jacob is on the autism spectrum, and for him that means having great intelligence coupled with the emotional and social skills of a much younger child. He has trouble with new topics of conversation if he’s not in control, and is afraid of saying the wrong thing; he never forgets any time he’s been embarrassed or hurt by someone, Summer says.

For instance, he had a scary experience with anesthesia when he broke his leg at age 4, and no one knew how deeply it had affected him until a couple years ago, Summer said. A school bus driver called the kids on the bus “sleepyheads,” and even the reference to being sleepy caused a meltdown for Jacob.

“He’s had to learn how to act in public,” Summer said. “It can be a struggle.”

April is National Autism Awareness Month, which is a major time of year for the Child Development Center on Highway 35, just outside of Kalispell. The CDC works with families in western Montana whose kids are at risk for developmental delays or have diagnosed developmental disabilities.

Outside the building, shiny pinwheels spin in the wind, one for each child in Flathead County who, according to the new statistics, would have autism.

Karlyn Gibbs, a supervisor and certified behavior analyst at CDC, said the latest figures from the U.S. Centers for Disease Control are startling: One in 68 American children are on the autism spectrum, and one in 42 boys are on the spectrum.

“This is going to have such a profound effect on communities,” Gibbs said. “We have to be educated as a community about action. That’s a lot of kids and parents who need support.”

CDC currently serves about 35 to 50 children with autism, Jenny Vickhammer, a family support specialist, said. More are expected, now that more families are able to afford insurance through the Affordable Care Act.

This year also marks the fifth year since the Montana Legislature passed Brandon’s Law, which requires Montana-based insurance companies to provide coverage for autism services for children up to age 18.

Gibbs and Vickhammer said they believe there are parents in the Flathead who assume their insurance doesn’t cover autism, or that the CDC only works with children up to age 8.

Staff at the CDC can help families parse their insurance coverage, Vickhammer said, and can also identify and diagnose children on the spectrum. The average age of diagnosis is four, but it can be identified as early as 18 months. The sooner treatments start, the better chance the child has of overcoming his or her obstacles.

“It would break my heart to have a parent who wasn’t accessing the services that they’re paying for (through insurance),” Vickhammer said.

Services for these children and families vary with each child, but they include intensive, home-based intervention, as well as community-based instruction, such as how to act at a restaurant or how to deal with unexpected situations at the grocery store.

A child like Jacob, who is currently in pre-authorization for programs with the CDC, has trouble with the unexpected, especially in conversation, Gibbs said. His brain immediately sends him into fight-or-flight mode.

He would receive extensive lessons on social cues, facial expressions, and other communicative aspects, and would have a one-on-one service provider to help him navigate everyday situations.

“We’re teaching them to access other parts of their brain, just like learning a foreign language,” Gibbs said.

Summer said she didn’t think there was anything different about Jacob when he was born; having worked with kids on the spectrum before, her experiences were with children who were very withdrawn and couldn’t communicate.

“I had this bright, happy boy who would look me in the eye and snuggle,” she said.

By the time he was 3 or 4, Jacob started exhibiting odd behaviors, and was diagnosed with autism at age 6. He’s now in fourth grade, in a self-contained program at a local elementary school. He attends for the first half of the day; the sight and smell of food at lunchtime sends him into a spiral.

Jacob attended a summer camp at the CDC last year that focused on tweens – the kids right on the cusp of adolescence – with autism and the changing social dynamics their age group is headed toward.

Summer learned more about the programs offered, and is waiting to hear if her son is eligible for the CDC programs. Her hopes for him before finding such treatments were dwindling, she said.

“My hope for Jacob is expanding now,” she said.

When asked about himself, Jacob says he worries people will think he’s like a “stereotypical boy.”

Jacob is who he is, and now his mom is allowing herself to hope that he can maneuver more of life on his own. He knows he is on the autism spectrum, but he is also quick to tell you he’s an individual – he’s not like everyone else with autism.

“I really don’t like to be included in being the same,” Jacob says.

For more information on the Child Development Center, visit www.childdevcenter.org. For more information on autism, visit www.autismspeaks.org.

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