Sunday, May 20, 2007

The challenge of autism

Treatment demands long hours of work for children, parents

Thursday, May 3, 2007 10:33 AM CDT

Two-year-old Jace Burgett loves to be tickled. He craves hugs from his mom, Cara Burgett, and he despises sharing with his little brother, Elliot.

So Jace is not that different from any other toddler his age in many ways. How he is different is that he has a full-time job that entails hours of physical and mental activity - a job with inflexible hours and no vacation time.

In between the hugs, tickles and other standard two-year-old activity, Jace receives four hours of speech therapy a week, two hours of occupational therapy a week, and up to 25 hours of applied behavioral analysis therapy per week. Add all that up and this tiny toddler works a full-time job without pay.

But for Jace, this kind of lifestyle is crucial. What may seem rigorous and unnecessary to parents of normally developing children is key to ensuring Jace reaches his full potential.

The extent of his developmental capacity will not be known for several years, but his parents, Cara and Tony Burgett, are making sure he gets there.

Such is the complex nature of Autism Spectrum Disorder. Jace was diagnosed with autism six months ago, just before he turned two. Because autism has a wide range of severity, it is unclear whether he will fall on the high-functioning end of the spectrum, the low-functioning end, or somewhere in between.

Only time will tell.

Autism is a complex developmental disability that typically appears during the first three years of life, according to the Autism Society of America, and impacts the normal development of the brain in the areas of social interaction and communication skills.

Although Cara and her husband were devastated by the diagnosis, and even hoped it might be wrong, they proceeded to do the research and follow through with recommended therapies, making their first appointment immediately.

"As much as we wanted to deny it, in our hearts we knew," Cara said from her family's Fairview Heights home. "We took the approach that this is precious time, and we've seen (from research) that early intervention is key."

Evidence shows that early intervention increases dramatically the positive outcomes for young children with autism, the Autism Society reports. Various therapies are recommended, including speech and language, occupational, physical, music, art sensory integration, and dietary interventions, among numerous others.

"Some of these kids go through more work than we do," said occupational therapist Kim David, who works with small children with autism, including Jace. "They are on these intense programs ... it's a whole change of lifestyle for a family."

Cara first noticed that something was amiss with Jace when he began to lose the language he had acquired at about 19 months of age.

"The first thing we noticed was that the word 'please' kept getting distorted to where it was soon just a 'puh'," she said. "He eventually lost all the words together, any word at all, except for 'up.' That was the only word he ever retained."

The lack of social interaction was something Cara only noticed after learning that it was a characteristic of autism. She would often take Jace to the park and observed that he never partook in the games children his age were playing. Instead, he walked the outline of the park or wandered along the fence.

"At the time we wondered what was going on," Cara said. "That didn't ring the autism bell for me."

Although lack of social interaction and the ability to verbally communicate are, in a sense, stereotypical of autism, there is no standard "type" or "typical" person with autism, said Sandra Rodenberg, Educational Services director at the Illinois Center for Autism in Fairview Heights.

"Autism encompasses a large group that go from all the way from individuals with severe or profound mental retardation, to individuals who are normally developing intellectually, but have the social and communication difficulties," said Rodenberg.

The Illinois Center for Autism has 143 students, Rodenberg said, and to say that all 143 students are alike is absolutely not true.

Consequently, working with children with autism poses a unique challenge to the professionals, and parents, who work with them. In addition, there is no real known cause of autism, though there are several theories floating around.

The Autism Society reported that current research ties autism to biological or neurological differences in the brain, and although no genetic link has been identified, there appears to be a pattern of autism or related disabilities in many families who have children with autism.

Autism is not, however, a mental illness, the society stressed, and children with autism are not unruly children who choose not to behave.

"Individuals with autism are not kids who decide just not to behave," Rodenberg reiterated. "These are kids with poor impulse control who become very frustrated when they are unable to communicate their needs."

Adding to their communicative frustration, children with autism also do not process sensory information as a normal child would, David said. As a result, the child will "do something," like hand flapping, rocking or even experiencing a total meltdown, to essentially readjust his nervous system to the environmental stimulant, which can range from the harsh florescent lights of a grocery store or the intense buzzing of an air conditioner.

"I work with kiddos to appropriately integrate and process the sensory information they experience everyday," David said. "It really decreases their ability to function because they are unable to deal with their senses."

Cara said she often feels ostracized when doing what would be considered normal activities for a mother and her young son, like going to the grocery store or running errands.

"One time we were in a store, and he had some real issues with the florescent lights," Cara said. "We ended up having to leave."

Jace has some stereotypical movements, like hand flapping, which can draw some odd looks from passersby, Cara said. It's hard to ignore those stares sometimes, she said.

"You say you don't care, but it still hurts when people stare," she said.

David, who works with five children with autism on a weekly basis, said the remark she hears most often from parents include the need for community awareness and understanding, as they often deal with comments about "controlling their children," she said.

"Don't be so quick to judge," David said. "There is just too much comparison. My heart really goes out to these patients."

Autism is a developmental disorder, but it doesn't have to be a devastating diagnosis, particularly if family, friends and the community rally around the issue and work to create an awareness, professionals said.

"These children are far from unintelligent," said Rodenberg, who has been working with children with autism for 10 years. "They just see the world far differently than we do."

With the recent discovery that autism now affects one in 150 children, as opposed to the previous one in 166, a person with autism is bound to touch a person's life in some manner.

In Illinois, the number of children receiving special education with autism as a primary diagnosis has grown from 1,960 to 9,455 in just 10 years. Whether society wants to acknowledge it or not, experts agree that autism is becoming more prevalent, though it is unclear why.

"Autism knows no social, economic or racial boundaries," Rodenberg said. "If we continue to educate all of the people that touch the lives of these children, I think the future holds great things."

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