Sunday, May 6, 2007

Autism rates rise, but so do hopes


Autism rates rise, but so do hopes
Schools reach out with innovative treatment plans

Ben Auten grabbed a bumpy rubber pillow as he walked into his classroom in Montfort Elementary School in Shelby Township and, with a well-practiced motion, pushed it under himself as he sat down.

An 8-year-old with autism, Ben understood that the hard bumps on the pillow would give him the extra stimulation his body craved to focus on his classes. When it was time to leave his special-ed classroom for his regular classroom, he took the pillow with him.

On this day, the bumpy pillow helped. Other days, Ben might squeeze a squishy ball or listen to music to stay focused.

The number of children diagnosed with autism is growing dramatically across the nation -- one in 150, compared with one in 1,500 just five years ago, according to a February study by the federal Centers for Disease Control and Prevention. School caseloads in Wayne, Macomb and Oakland counties have roughly doubled in the same time span.

Nobody knows what causes autism, a neurological disorder affecting a person's senses and ability to communicate and socialize. Theories -- none proven -- about why the numbers are growing range from better awareness of the disorder to changes in the environment.

The increase in autism cases is creating challenges for public schools across metro Detroit that are charged with providing a free education to all children, even if that means they have to treat a disability before a child can learn. Because insurance companies rarely cover costly therapies and programs for children with autism, the schools are often their only source of treatment.

And the schools are searching for new approaches to reach them.

"This is not a disability identification that has a lot of outside agencies, even doctors, who have the wherewithal to address it," said James Boogren, associate director of the Burger Development Center in Garden City Public Schools, the largest center for children with autism in the Midwest.

Focusing on socialization

Wayne County school districts have put tens of millions of dollars into Burger, which has 330 students ranging in age from 3 to 26 with various levels of impairment -- from students who can't walk or talk to those who can spend part of each day in a regular classroom. The school accepts students from all over Wayne County, with each student's home district paying their way.

Classes at Burger have no more than five students with a teacher and a teacher's aide. The large number of students with autism, along with an annual budget of $17.7 million, allows students to be grouped by age and abilities, Boogren said.

Burger's classrooms look like quirky living rooms. There are desks and bulletin boards, but there are also curtains, dozens of pictures on the walls and windows, and decorations hanging from the ceiling that pertain to the lessons. At the same time, the lights are dimmed and bells are softened to keep the students from being overstimulated.

Introducing themselves to a stranger is clearly an effort for many of the students. One tall, willowy girl refused to say hello or even look up at a newcomer in the room. It's a typical autistic response, and that inability to interact would get in the way of learning in a regular classroom, teachers say.

Burger's small student-to-teacher ratio allows teachers to tap into each student's unique abilities and learning style, whatever their method of communication.

Along with the academics, routine social scenes are part of each day's lessons. Older students spend part of the day in kitchens and living rooms to help them learn the most basic life skills.

"Even though this is not something that is going to go away in their life, we can certainly improve the quality of their life," Boogren said.

Starting with kindergartners

Many parents of mildly autistic children, however, push to have their children included in regular classrooms, instead of a center such as Burger.

"Their disability is all about language, communication, motivation and behavior. These students often need to be in a general education classroom, but because their needs are so visible, they're not always given that opportunity to be in general education," said Mark Larson, an assistant professor in the Wayne State University College of Education.

Ben's parents consider themselves lucky that their school district, Utica Community Schools, is developing a creative alternative program for mildly autistic students.

"The concern we had is we were going to end up in an environment with severely autistic children," said Ben's father, Robert Auten of Shelby Township. "He needs to be challenged by kids who are not autistic. In the other environment, he would have been the high-functioning child and he would have been working down at the other kids' level."

Ben is in the CORE program -- Children Organizing Resources Effectively -- a 2-year-old pilot program aimed at getting mildly autistic kindergarten- through second-grade children into regular education classrooms.

CORE students come to a special classroom four times daily to talk about problems and to work on their social skills with a full-time teacher, plus a part-time social worker, therapist and psychologist. The rest of the time, they are in a regular classroom.

Words and phrases such as "share," "play nice," "take turns" and "nice smile" are found on walls and tables everywhere in the CORE classroom. The students practice social situations, talking to each other, making eye contact and reading from scripts of friendly questions and small talk designed to replicate a casual conversation.

The program is less expensive than giving each child a full-time aide, the traditional way of helping mildly autistic students in regular classrooms, said Pat McKinnon, executive director of special-education services for Utica schools. And the children learn to deal with their autism independently, instead of becoming aide-dependent.

Families take action

While public schools are the main provider of resources and treatment for children with autism, there is no consistency in the availability or quality of programs from one district to the next because Michigan does not mandate what schools should do for these children, Larson said.

In 2005-06, Michigan's public schools spent $93.5 million on programs just for children with autism. That money is on top of what the schools pay special-education teachers, psychologists, social workers and others who also deal with children with autism.

For parents who are not happy with their local district's offerings, the only alternative is making their way through a maze of costly programs and medical treatments.

Scott Novitsky of Walker considers himself one of the fortunate few. His insurance helps pay the small army of professionals treating his 4-year-old daughter, Maiya.

She has Rett syndrome, a severe form of autism. She does not speak, has gastrointestinal problems and has no control of her hands. She suffers from uncontrollable repetitive movements and uses a wheelchair.

"The insurance companies wanted to pawn everything off on the school system," Novitsky said.

His goal is to keep Maiya from regressing. If she makes gains, that's even better.

"We're going to just enjoy the time we have with her and keep her happy," he said. "And hopefully the cure will come."

Zachary Ottoy's family's insurance doesn't cover his autism needs, and the family's search for help beyond the schools has been costly. Zachary, 7, can't speak and needs a special vest to sit upright.

Zachary attends Rodgers Elementary in St. Clair Shores, which has a program for autistic children run by the Macomb Intermediate School District.

But the Clinton Township family also pays for a variety of private therapies. At Crawl, Walk, Jump, Run Therapy Clinic in Clinton Township, Zachary might on a given day spend time in a thera-suit, a type of harness that helps his therapists have more control over his movements. He also participates in gymnastics for his motor coordination at Cutting Edge Athletics gym in Clinton Township.

The Ottoys estimate that treatments for Zachary have cost them close to $200,000 when the loss of income for his mother, Ann Marie Ottoy, is included.

"Anything I don't pay for is coming through the public school system," she said. "But try as they might, it's woefully inadequate."

To Ann Marie Ottoy, there is no other choice.

"I keep thinking, 'What if we didn't try it, and it was the one that would have worked?' "

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