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News › Autism: How families cope with autistic children
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Education: Autism: How families cope with autistic children
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Posted by Sylvia on Sunday, February 01, 2004 (12:20:53)
Naples News 01/02/2004
By Joan Lowy
Teachers in the Boulder Valley School District in Colorado began to notice about six years ago that more children with autism were entering classes each year.
Some of the children would rock back and forth all day, not speaking or focusing on anything around them. Others were learning to read in preschool well ahead of most of their peers, but they seemed more interested in letters and numbers than in people. They had trouble communicating and frequently became overwhelmed, breaking down in tears or having tantrums.
"I had one mom ask me at a parent-teacher conference, 'Why is it that my child can read all her letters, knows all her numbers, but can't say, Mommy get me a glass of milk?' " preschool teacher Kathy Morson said.
Autism is often regarded as a personal tragedy — a rare and mysterious brain disorder that robs children of their ability to relate to other people and their environment, locking them in a world of their own.
The U.S. Department of Education recorded a nationwide average increase of 544 percent in autistic students from 1992 to 2001.
"The numbers are really extraordinary," Thomas Insel, director of the National Institute of Mental Health, told a conference on autism convened by federal health agencies in November.
Autism is a complex and little understood group of brain disorders whose symptoms and severity can vary widely among individuals. Children with autism often don't make or respond to human gestures that come as naturally to other people as breathing — a smile, a soft word, a kiss. Many don't get the punchlines to jokes or see the beauty of poetry. They may never say, "I love you."
Every parent of an autistic child has a story to tell, a moment that seems to crystallize the trials and heartache of living with autism.
For Jessica Stiles Varma of Elk Grove, Calif., it was the day she decided to do something so simple that most parents never give it a second thought — take a walk with her two daughters in the neighborhood.
Varma was pushing her younger daughter in a carriage when suddenly her older daughter, Katelyn, who has autism, began to have a meltdown. Her attempts to get away from her mother were so frenzied that Varma had to use both hands and all her strength to hold on to the girl, fearing she would run into the street.
For four hours, Varma sat on a curb clutching her older daughter, the carriage with her younger daughter at her side, unable to let go long enough to get the three of them home.
"Finally a neighbor came along, took pity on us and helped us home," Varma said.
About half of all children with autism are mentally retarded, but many autistic children have normal or even superior intelligence. The share of autistic children who are not mentally retarded appears to be increasing, causing some scientists to theorize that a new form of the disorder is emerging.
The societal costs are staggering. The average child with autism will require $4 million in lifetime supervision and care.
The financial and emotional toll on families of autistic children is incalculable. Many parents devote their lives to caring for an autistic child. Financial resources are drained to pay for doctors, behavioral therapists and treatments. Instead of saving for college, parents plan for and worry about how to provide care for their child after they are gone.
"We've had people lose their homes, mortgage everything they have ... trying to take care of their kids," said Rep. Dan Burton, R-Ind., who has an autistic grandson.
Sue, 44, a Milwaukee mother who asked that her last name not be used, was a political science professor at one of the nation's most prestigious universities before her son, Sam, was born four years ago. Resuming her career became impossible after Sam was diagnosed with autism.
"It's hard to work a day job if you are always having to call a lawyer or doctor or take him to therapy appointments," Sue said.
She recently took a job as a night clerk in a video store because she "wanted to get out of the house" and be among people who didn't know that she had a disabled child or that she was a published author with a Ph.D, Sue said.
Kathleen Berry and her husband, Michael McIntire, of Sacramento, Calif., have spent as much as $50,000 a year of their own money on behavioral therapy and other treatments for their two autistic children, Stewart, 9, and Caroline, 4.
About 30 hours a week of one-to-one therapy that relies on a system of rewards for learned behaviors like how to brush teeth or sit properly at a table has been shown to make a dramatic difference in whether an autistic child is able to attend school in a mainstream classroom and ultimately live independently or whether the child is institutionalized.
Thanks to therapy, Stewart and Caroline are now in school with non-autistic children, but they are each accompanied by a personal aide who helps them if they become confused or takes them aside if they have an outburst, Berry said.
"It's a tremendous amount of work, but well worth it," Berry said. "The alternatives are exceedingly costly and unthinkable."
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Posted by Sylvia on Sunday, February 01, 2004 (12:20:53) (2372 reads)
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