BRIDGING THE GAP

Bridging the gap: Center helps families deal with autism

Center helps families deal with autism
2013-03-23T22:00:00Z 2014-07-15T14:00:00Z Bridging the gap: Center helps families deal with autismDOLLY A. BUTZ dbutz@siouxcityjournal.com Sioux City Journal

Jacob Lange's blue eyes watered Tuesday as he stood in a narrow bright yellow classroom on the second floor of the Pier Center for Autism tightly wrapping his arms around his mother Tammy.

The promise of a bag of potato chips and a can of Mountain Dew, the 11-year-old's favorite soft drink, eventually enticed him to relinquish his grip and sit with autism and behavior specialist Jan Turbes on a set of brown metal cushion chairs facing a white markerboard.

The first topic on Turbes' lesson plan: "greeting people."

"When you greet somebody you have to say, 'Hi,'" Turbes instructed.

"Hi," Jacob repeated softly.

Turbes counted to three. "Then what do you do?" she asked.

Jacob looked on silently.

"Then you smile," Turbes responded.

"Smile," Jacob repeated before flashing a toothy grin.

Tammy and Bill Lange, of Le Mars, Iowa, hope the Pier Center for Autism will be a "stepping stone" to independence for their son.

The non-profit organization, which opened in late January at 709 Pierce St., provides services to individuals like Jacob, who have been diagnosed with autism, a pervasive neurodevelopmental disorder that results in marked difficulties in communication, social interaction and repetitive behavior.

The Langes want Jacob to be able to make a peanut butter and jelly sandwich on his own, wash his hands after using the restroom and interact with other children.

"He doesn't care if he talks to anybody or not," Tammy Lange said.

HUGS COUNT

Jacob is fascinated with technology. He enjoys playing with iPads, cellular phones and computers. He also loves animated movies and giving hugs.

"He's very loving," Bill Lange said. "He loves to give big hugs. He doesn't like it when anyone is sad."

Jacob is often misunderstood by strangers who are caught off guard by his behavior. An elderly woman once suggested that the Langes "spank that child" when Jacob acted up at a church function. The loud, echoing sound of voices in the hall, Tammy Lange said, caused Jacob's senses to overload. Bill Lange recalled the time a Walmart greeter thought Jacob was "rude" when he refused to take a sucker she offered him.

"It's easy to get embarrassed and not want to do those things anymore," he said. "I guess it's OK if people around you look at you with weird faces."

According to a 2011-12 telephone survey released Wednesday by the Centers for Disease Control and Prevention's National Center for Health Statistics, 1 in 50 school-aged children has autism. Those findings indicate that more children have autism than previously thought.

A report released by the CDC a year ago that was based on 8-year-olds' medical and education records from 2007 estimated that 1 in 88 children in the United States has autism. More than 8,000 children are affected by the disorder in Iowa alone.

Turbes, who has been working with autistic children for 26 years, said a diagnosis of autism doesn't mean that the child has an intellectual disability. Fifty percent of children with autism, she said, are of average intelligence.

Autism, according to Turbes, rarely stands alone. She said most children receiving services at the Pier Center for Autism have also been diagnosed with attention deficit hyperactivity disorder or obsessive compulsive disorder.

"We have some kiddos who have difficulty with socialization, getting along with peers, understanding that give and take of communication," she said. "Those are the primary needs that we have."

Boys are more likely than girls to be diagnosed with autism. According to the CDC's new data, for every autistic girl, there are four boys with the disorder.

Although the prevalence of autism has risen nearly 80 percent over the last decade, according to the CDC, there is no single cause of it. Researchers are investigating many theories including those that link autism to genetic and environmental factors. Childhood vaccination has been ruled out as a source of autism, according to Todd Kopelman, a psychologist at the University of Iowa Children's Hospital Autism Center.

Kopelman said core symptoms of autism are present by age 3 and include not responding when called by name, having difficulty maintaining eye contact or exhibiting echolalia, echoing words or phrases heard while watching a cartoon or movie.

Other symptoms associated with autism include repetitive hand or motor movements, self injurious behavior and fixed unusual interests, such as watching a fan circulate or closing a door over and over.

'RAIN MAN' MODEL

Around age 2, Tammy Lange said Jacob began losing his language skills.

"You would talk to him or say his name and he would act like he didn't hear you," she said.

A hearing problem wasn't causing Jacob's behavior. Autism was. When a Sioux Falls physician gave the Langes, who have three older children, Jacob's diagnosis, they felt shock and panic.

"You have in your mind the way 'Rain Man' was," Tammy Lange said, citing the 1988 Oscar-winning film starring actor Dustin Hoffman as an autistic savant. Hoffman's character has superb recall and math skills, but shows little emotional expression and avoids eye contact.

"I didn't really know what autism was besides that kind of a thing," she said.

Medical professionals use the Autism Diagnostic Observation Schedule to diagnose and assess children suspected of having autism.

Kopelman said he asks the child to perform certain tasks related to autism's core symptom areas. He observes the child's behavior and scores him or her accordingly. Early diagnosis, which can be made as soon as 18 months of age, he said, is key to managing autism.

After he was diagnosed with autism, Jacob immediately began seeing speech and occupational therapists. At home, Tammy tried to make him repeat her actions.

"I would touch my nose and he would have to follow," she said. "Once he finally did what I was trying to show him to do, then I would give him a reward."

Although there is no cure for autism, Kopelman said, Applied Behavior Analysis (ABA), an approach that teaches social, motor and verbal behaviors and reasoning skills, is an effective treatment. Unfortunately, the state of Iowa lacks a sufficient number of trained ABA providers. Iowa families, Kopelman said, often travel a great distance from their homes to receive services such as ABA, which Iowa state law does not require health insurers to provide coverage for.

"We know what can happen for that family, but it's hard to find someone who can help them," he said. "We really need high quality services not just in Des Moines, Cedar Rapids and Iowa City. (The Pier Center) is a great resource."

BRINGING IT HOME

Many Siouxland families, including Pier Center for Autism founder Josh Cobbs', have traveled to Iowa City, Des Moines, Omaha and Sioux Falls so that their children can receive services.

Cobbs, whose 13-year-old son has autism, said he and his group had talked about opening a center for children with autism for years in hopes of filling a great and growing need in Sioux City. The idea took off in January 2012 when a seven-member board was formed and an agreement was reached to lease a 4,000-square-foot space from St. Joseph's Catholic Church.

After some plumbing repairs, electrical work and minor cosmetic updates, the Pier Center for Autism, which plays off of the meaning of the word "pier" - a support or bridge, opened its doors nearly a year later.

"What we're trying to do is bridge the gaps between transition, diagnosis and service level," Cobbs said. "We're trying to build a whole model around the family and the individual."

Cobbs said seven families are enrolled in the non-profit's 12-week Play And Learn (P.A.L.) or Communicate Understand Engage (C.U.E.) groups. Clients range from 6 years old to college age. Young children in the P.A.L. group, he said, practice imitation and modeling, while students in the C.U.E. group work on interacting with peers and understanding the unwritten curriculum.

Typical children catch on after being instructed once. Turbes said that is not the case with the children in her group, who need to practice what they are taught and then be re-taught. She said she is currently helping a middle schooler accept her autism diagnosis and learn how to get along with the other girls in her class.

"We're trying with that age group to let them know that it's OK to have autism," she said. "Some of us wear glasses. Some of us have diabetes. This is the way your brain works."

Copyright 2015 Sioux City Journal. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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