October 5, 2000

Asperger's Syndrome presents
challenges to an Iowa family

Jessica Tarbox
digital iowa staff reporter
Drake University

CEDAR RAPIDS, Iowa -- Katie is not learning-disabled.

She learns well, draws beautifully, and does well in science class, even though it's not her favorite subject.

But Katie Roberts, an Iowa child, has often been lumped together with learning-disabled children in school, linking her, in the minds of her peers and teachers, to children who struggle in classes due to learning disabilities. This is an incorrect connection, developed by the combined efforts of two guilty parties: a lack of understanding and a neurological disorder called Asperger's Syndrome.

There was a time, not really very long ago, that most neurological disorders did not have specific names: Attention Deficit Disorder was a phrase unknown to many people and children with dyslexia were categorized as simply "slow." Asperger's is slowly emerging from the psychiatry books and into the public domain, but on the everyday level, on the level of Katie's fellow eighth graders, the word means nothing and significance means even less.

Asperger's Syndrome was identified in 1944 and named for Viennese physician Hans Asperger, but the disorder was not included in the Diagnostic and Statistical Manual of Mental Disorders (DSM IV) until 1994 and, therefore, was not widely diagnosed until a few years ago. The disorder was until recently often hidden under diagnosis of ADD or Attention Deficit Hyperactivity Disorder. People with Asperger's display deficiency in social skills, difficulty with changes, obsessive behavior, preoccupation with a particular subject of interest, and difficulty reading nonverbal clues. Many also show remarkable skill in a specific area, and although some Asperger's-diagnosed people have average IQs, many possess an extraordinary intelligence.

The disorder is currently classified as an "autism spectrum disorder" and is sometimes equated with what is called High-Functioning Autism. It is a result of a neurological malfunction and may appear to the untrained eye as rudeness or bad parenting.

Try explaining all that to a 13-year-old who sees his classmate speaking and arguing incessantly about one topic and trotting off once a day to be with special education children.

It is, as Katie's mother Karen said, an "invisible illness." Conversations are a struggle, little outbursts are imminent, and clashes are frequent, and if a teacher or student looks no further than the surface, Katie is just misbehaving. "They used to say I'm bad," said Katie, who is now 13.

This is where the trouble lies, according to Katie's parents, Dave and Karen Roberts. "The school system really doesn't have a fit for Asperger's," Karen said of Katie's behavior disorder class. "They're really not looking at the specifics ... not understanding that it's part of her condition or making adjustments in the mainstream class."

When she entered sixth grade, Katie's parents and teachers placed her in special education classes. The classes provided a helpful outlet for Katie's everyday frustrations, but they did not challenge her intellectually. Encouraged, Katie's parents moved her to all mainstream classes in seventh grade. The move was "a disaster," Karen said, and although she and Dave were reluctant to place Katie in a behavior disorder class, as that was not quite the right fit either, something had to be done.

"Things are a little better now," Dave said, "because last year we had conversations with ... the counselors and teachers to make sure they understand what Asperger's is."

Advocacy on the part of parents of children with disorders can be a painful job-- "Other parents look down on us because of her behavior in public," Dave said-- but positive outcomes eventually blossom from patience and determination.

Lt. Gov. Sally Pederson has been a firm defender of her son's educational rights for 15 years. Her son Ronald was diagnosed with autism at age 2. Since then, Pederson has devoted much time and energy to the Autism Society of Iowa and to the Homestead, a home for autistic adults. As lieutenant governor, she upholds a dedication to children with special needs and confronts issues of disability and diversity in Iowa. But she is, underneath all the statewide recognition and advocacy, a mother of a child who is a little different from the rest.

At an early age, Ronald started a special education preschool program, a class that was part of a study being done by Utah University. "The parents had special training in learning about behavior disorders, behavior modification and laws," Pederson said. "It was helpful to me to see what I could do, as a parent, and what rights my child had to a free and appropriate education."

Perhaps due to Pederson's work with autism or perhaps due to the fact that autism is more widely recognized than Asperger's, a network of support groups and autism specialist teams exists in the cities and Area Education Agencies of Iowa. An autism specialist team, Pederson said, is a group of educators and medical professionals-- including a special education teacher, a nurse, a speech therapist and a psychologist-- that moves within schools all over the AEA to train and inform teachers when an autistic student is identified.

Awareness had been Pederson's goal, and she said that understanding has improved. Before her son was diagnosed, "teachers said I think you need to get his hearing checked ... because kids with autism are so focused they can tune it all out," she said. Since then, teachers have been aware of the disorder, "more so now than when my child was young."

Such awareness would be a dream come true for Karen, Dave and Katie. Asperger's is not technically autism, and Katie would not qualify for assistance from an autism specialist team. It is still in the stage of limited understanding by the general public. Many people, Karen said, "are not willing to accept that it is an illness."

But there is hope in the future. One of the high schools Katie could attend is currently working on a program for students with Asperger's that Katie could participate in when she enters ninth grade next fall.

Katie's ambitions as she approaches high school are similar to any other kid's: she wants to be in show choir, maybe continue with band, maybe try out for some school plays. But the overriding goal is to "have some good friends. When I was in grade school I had lots of friends. We were at each other's houses every day. The only reason I'm excited for high school is that I get to meet new people," she said.

Karen, reaching for a tissue to wipe away tears of frustration, said that is what she and Dave would wish for Katie as well. Katie struggles with her peers, Karen said, and cries about not having friends. When she meets someone new, Karen said, once they get to know her and don't understand why she is acting strangely, they go away.

Fortunately for Katie, she has a loving family and an ambition, even at so young an age, to be something great. "I want to help people," she said, "people having troubles like me."

And maybe by the time she is old enough to have a career, the public will have more of an awareness of Asperger's and will know that Katie is not learning-disabled. She's just a bright person with a lot of places to go and a different path to follow.