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PUBLISHED: 12:04 PM on Wednesday, April 19, 2006
Parents of autistic children vent frustrations
One mother of an autistic child occasionally feels like a hired clown and an incompetent parent. Another feels like she is raising a 4-year-old infant. A third laughs at the idea of "thinking outside the box."

"There is no box," she said.

Several parents of autistic children met in March to make 1,300 brightly colored, puzzle-shaped pins for Autism Awareness Month in April. The effort was spearheaded by Jenny Godfrey, an early childhood special education teacher. Godfrey works with six autistic children on a one-on-one basis, and she is passionate about increasing awareness of the condition.

"It is a spectrum disorder," she said. "There is a wide range of developmental levels and a wide range of abilities."

Autism typically appears before a child's third birthday, and those affected have a difficult time with communication, social interactions, and leisure or play activities.

Linda Helmig Bram said she quickly realized that her now 4-year-old daughter Sophia had difficulties.

"Things were not quite right with my daughter from birth," Helmig Bram said. "At one year, we began to get worried about her developmental delays. She was diagnosed (with autism) at 20 months."

Helmig Bram said Sophia didn't speak for several years, and she still struggles with communication.

"(Sophia) signs cereals when she wants something really bad, but it might not be cereal that she wants," Helmig Bram said. "You feel very incompetent as a mom."

Godfrey said autistic children don't understand that words have meanings or that language has a purpose.

"We have to train them that card means this and scissors mean this," Godfrey said while holding the two objects in her hands. "We have to teach them that language has a purpose."

She does that with her students by repeatedly saying the words while helping them touch or recognize the object.

"When I say card, it might sound like something completely different," Godfrey said. "But they will learn that it means card."

Another reason communication is difficult for autistic children is they usually prefer to stay "in their own little world," she said.

To reach these kids and encourage them to interact with others, Godfrey and the parents said they have to be animated.

"Sometimes, it really feels like I am a hired clown," Helmig Bram said. "I have to work really hard to get her attention. It's exhausting."

Despite the difficulties they face, children with autism can make a lot of advancement, particularly if they are diagnosed early and receive specialized attention.

"They can be very difficult, but they are great kids," Godfrey said. "You have to stay eight steps ahead of them."

Recent statistics from the National Institutes of Health and the Centers for Disease Control and Prevention indicate that autism is growing at a rate of 10 percent to 17 percent per year. One child in every 166 live births is believed to have autism.

Those statistics are questioned by some authorities because the increase in autism coincides with a decrease in the number of reported cases of mental retardation and learning disabilities.


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