In both the Missouri House and Senate, pending legislation would require insurance coverage for children with autism. This week in


we will take a closer look at autism, what it is and how it affects families in Southwest Missouri.

In both the Missouri House and Senate, pending legislation would require insurance coverage for children with autism.

This week in we will take a closer look at autism, what it is and how it affects families in Southwest Missouri.

By the numbers

Nearly 1 percent of children will be diagnosed with autism. A recent study completed by the Centers for Disease Control and Prevention says an average of 1 in 110 children in the United States have an autism spectrum disorder (ASD), although the numbers in the study ranged from 1 in 80 to 1 in 240. 

Out of 26,533 children in the Missouri study, 321, or 1.2 percent, fell under the autism spectrum.  The disorder is more common in boys than girls.

Politics

Nikki Straw knows the state of Missouri situation. She was part of the Blue Ribbon Panel that released a 2007 state report. She chairs the Statewide Autism Parent Advisory Council, and her step-daughter, Jocelynn Straw, was diagnosed with autism at 10.

Now 21, Jocelynn Straw wants to get married and have a family.

“I don’t see any reason that she can’t do it,” Nikki Straw said. “We never treated her like she has a disability.”

Some of the letters she read as part of the panel made her cry, but Nikki Straw believes that children can be mainstreamed and that young children, especially, should not be left behind in the developmental dust. The treatments are there, the therapy is there and she hopes other parents get started using applied behavior analysis with their children at a younger age.

“A lot of the stuff we did we were doing by the seat of our pants,” she said.

With sheer luck, she ended up working with techniques similar to ABA. ABA breaks down a large task into smaller pieces and then applauds each small success. However, the costs of therapy, medical treatments for other associated conditions and even diagnosis-related expenses can rack up, and she hopes families can begin getting some relief through insurance.

Although bills in both the House and Senate vary in the amount of coverage, they would help pay for ABA, the primary therapy used to treat autism. The Senate bill would cap insurance for therapy at $55,000 and 21 years of age. The House bill ends coverage at 18 and offers $36,000 in coverage.

Definition

Autism is the catchphrase for a family of neurological disorders. Commonly defined as autism spectrum disorders (ASD) are: autism, Asperger’s syndrome and pervasive developmental disorder not otherwise specified (PDD-NOS).

“They are so wildly different, every one of them,” said Jennifer Kirby, clinical director of the Ozark Center for Autism.

A board certified behavioral analyst, Kirby sees a variety of challenges every day at the Ozark Center preschool.

Some children may already read, but have socialization deficits. Those diagnosed with autism often have poor social skills and their communication style is unique. Speech may be entirely absent or a child may echo phrases without knowing their meaning. Autistic childr­en don’t play pretend and have trouble making eye contact.

Individuals may have sensory processing issues and become overwhelmed by new sights, sounds or smells. They may have repetitive, unusual body movement like walking on the tip of their toes or flapping their arms. They may not like to cuddle or be touched.

One of the most difficult areas for parents are behavior issues. An autistic person may not be able to vocalize, and parents have to guess what they want or what is bothering them. Additionally, autistic children are not socially motivated, and where an average child might feel the need to be compliant, an autistic child will not. And that means parents and teachers have to find other ways to motivate them, like the ABA technique.

Diagnosis

Getting a diagnosis can be complicated, but parents of autistic children say it is key to getting necessary aid. Typically, parents notice some developmental delay and their pediatrician will refer them to a specialist, where there may be a waiting list. Once there is a diagnosis children may qualify for a state program and another waiting list.

The disorder is becoming more well-known, but 10 years ago, it was difficult to find an expert who even knew what autism was.

Kathleen Vanderhoofven was diagnosed with Asperger’s at 34. Although people with an Asperger diagnosis are often very smart, they are missing key social skills.

Vanderhoofven holds a bachelor’s degree, is a mother of two and a voice for others with Asperger’s. Initially, doctors tried to tell her she had a personality disorder, and while other people told her not to worry, she knew there was something wrong. When she heard that non-verbal communication makes up most of what people “hear” she was shocked. Vanderhoofven said she understands words, but tone of voice means nothing to her.

“It’s kind of like everybody else learned something back in kindergarten,” she said. “If someone could just teach me all this stuff then things would get better.”

Neosho Daily News