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Published: Sunday, 6/6/2004

Autism Task Force gathers in Toledo

BY LUKE SHOCKMAN
BLADE STAFF WRITER
Faris, being held by his mother, Mona Qaimari of Sylvania Township, battles with autism. The brain disorder is the fastest growing developmental disability in America. Faris, being held by his mother, Mona Qaimari of Sylvania Township, battles with autism. The brain disorder is the fastest growing developmental disability in America.
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A trip to the zoo is an enjoyable experience for most parents.

For Mona Qaimari, each visit with her autistic son, Faris, is heartbreaking.

"Every summer we go to the zoo and I hope this is the summer where I'll say, 'Faris, where is the zebra?' And he'll point to the zebra. That still hasn't happened."

Faris is 6 years old.

Mrs. Qaimari of Sylvania Township remembers the ride home from the doctor's office three years ago after Faris was diagnosed with autism.

"I looked at him in the back seat, and I just burst into tears," she says.

Going to the prom, college, getting married - all of these suddenly seemed like impossible goals for her son. Today, the stay-at-home mom says she has accepted the situation, thanks in large part to the many parents of autistic children she has met.

"No one knows until they go through it," she says.

In the last decade, a lot more parents nationwide have been going through it.

For reasons still unclear, the number of children with autism, a brain disorder that interferes with how people understand and communicate, is soaring nationwide, according to the Autism Society of America. It's the fastest-growing developmental disability, the society says, and an estimated 1.5 million children and adults have been diagnosed with autism.

Reliable data on the number of people affected are hard to come by; anywhere from 3 per 1,000 to as many as 1 in every 166 people are considered autistic, meaning more than 68,000 Ohioans and a similar number in Michigan may have the disorder.

That's one reason the Ohio General Assembly has formed an Autism Task Force. The group's first public forum, one of eight scheduled throughout the state, will be Thursday at the Medical College of Ohio in Toledo. After gathering public input, the task force will present a report and its suggestions in November to the Ohio General Assembly and Gov. Bob Taft.

"I want Ohio to create a national model for the delivery of services to children and adults with autism. I'll be satisfied with nothing less," said state representative Jon Peterson (R., Delaware), who has an autistic daughter and is chairman of the committee.

He's got his work cut out for him.

In interviews with parents such as Mrs. Qaimari, physicians, and autism advocates, most say Ohio does a poor job of identifying and tracking autism and has few services available for those with the disorder.

"I had a family of an autistic child from California move here and they were devastated to find nothing, or very little, in the way of services," says Dr. Karen Ratliff-Schaub, an autism expert and chief of developmental-behavioral pediatrics at Mercy Children's Hospital in Toledo. "I get so frustrated in having to tell a family, 'Your child has autism,' and then not being able to offer them services."

The situation is much the same in Michigan, area autism advocates say.

Dr. Ratliff-Schaub says what little there is to offer parents is often out of reach for many parents due to the steep prices of interventions such as speech therapy, which can run $50 to $100 an hour.

"And insurance usually doesn't pay for it. It's heartbreaking," Dr. Ratliff-Schaub adds.

Barb Yavorcik thought her son was a genius.

At age 2 1/2, he had an amazing memory and could identify the flags of more than 100 countries. He also could repeat almost anything he'd heard in minute detail. One day her husband was giving him a bike ride and her son tried to stand. Her husband, Jim, scolded her son and told him to sit down or he'd be injured.

"Injured?" her little boy replied. "If you're in an accident, call Frank Cubbon, Jr., at 243-7243."

Mr. Yavorcik, who's an attorney, recognized that his son had just repeated a radio commercial for Frank Cubbon, another Toledo attorney.

Despite these abilities, their son had difficulty simply conversing. Trips to the doctors were frustrating.

"The doctor told me I was just being a nervous mom," she recalls.

But she knew something was wrong and continued to push for answers. Their son was eventually diagnosed with autism.

Frustrated with the lack of services for autistics, Mrs. Yavorcik turned to the Autism Society of Ohio, a nonprofit advocacy group, for support. She is now president of the society.

Though her son, now 15, has a milder form of autism and does well in Ottawa Hills schools, Mrs. Yavorcik says she struggled like all parents to learn about the mysterious disorder.

"The only thing I knew about autism was Rain Man," she says, referring to the 1988 movie in which Dustin Hoffman played an autistic man.

It's a typical reaction.

Despite the increased incidence of autism, much about the disorder remains a mystery. Autism is the general term used to describe what scientists refer to as "autism spectrum disorder." Spectrum is used because the effects vary widely.

Some autistics have such a severe disorder they can barely communicate and need constant supervision. About 40 percent can't speak at all. Others have milder forms and can communicate, albeit with some difficulty.

Because of this wide spectrum, tell-tale symptoms are difficult for some parents to pick up on. However, some of the more common signals include:

  • Poor social skills: Parents may notice their child never wants to interact or play with other children. They also might not like to be held or cuddled.

  • Poor communicative skills: Aside from not speaking, other problems may include the inability to recognize common gestures such as waving good-bye. Other children may repeat something they hear, such as a TV or radio commercial. Still others may have good verbal skills, then begin to lose those skills for no apparent reason.

  • Repetitive behavior: Some autistics take great comfort in maintaining precise patterns or ways of doing things and become upset if that pattern is interrupted.

    Recognizing clues like these at an early age, even by age 2, is critical, according to Dr. Catherine Lord, director of the Autism and Communications Disorder Program at the University of Michigan.

    "In the last 10 years, there's been a growing body of evidence that kids who get early intensive intervention seem to make great improvements," she says.

    No one knows what causes autism, despite a lot of research and theories.

    Researchers think genetics are probably the culprit, and something in the environment also might be a factor. But parents do not "cause" autism by some behavior or action on their part.

    Another mystery is why there has been such a rapid rise in autism.

    Most researchers believe better diagnosis and greater public awareness of autism is largely to blame, but many physicians are nervous that something else might be going on.

    "There are definitely more kids with autism. It's almost frightening that there are so many more. It's sort of a medical crisis, and we don't have an answer," says Dr. Patty Manning-Courtney, medical director of the Kelly O'Leary Center for Autism Spectrum Disorders at Cincinnati Children's Hospital.

    It's enough to put a lump in any parent's throat: No one wants to play with your child.

    Carol Holmes has dealt with that for more than a decade.

    "He'll sit in the recliner and look out the window. He watches all the neighborhood kids play," says Mrs. Holmes of Toledo. "It's hard."

    When children do interact with her son, Ryan, it's usually to tease him, she says.

    Sometimes, Mrs. Holmes confides, "I just feel like bawling."

    But Mrs. Holmes seems almost too busy to cry, working a part-time job, taking care of Ryan, now 14, and devoting much of whatever time she has left to the Autism Academy of Learning, a Toledo-area charter school for autistic children she helped start. The school, with 58 students, has a waiting list of 40 families.

    Mrs. Holmes is skeptical of the Ohio task force but hopes it will result in more help for autistic children and their parents.

    Mrs. Qaimari agrees. More money and services are needed, she says, but a lot of parents of autistic children would appreciate something else: Understanding.

    Contact Luke Shockman at: lshockman@theblade.com or 419-724-6084.



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