The Christmas he was 11, Randy Charley asked Santa Claus for a cloning contraption.
"I wanted to clone Albert Einstein or Bill Gates so I’d have somebody who isn’t as boring as the people at school to talk to," he says.
Randy, of Bourbonnais, amazed his family by taking apart and reassembling electronic devices as a toddler. Yet, when it came time for kindergarten, he flunked the preschool screening.
When Alex Arias goes out to play backyard ball in his Joliet neighborhood, he alienates the kids on his block because he "always has to run the show," his mother Beth says. But, when she gets stuck in traffic, her 9-year-old son comes up with a quicker route without ever checking a map.
As a little girl, 14-year-old Amanda Bopp, also of Joliet, could barely make it through a sleepover because she was so caught up in sticking to a strict bedtime ritual. But, since she was little, she’s functioned as a human spell-check for her family.
Randy, Alex and Amanda are diagnosed with Asperger Syndrome, a condition that comes with a conflicting set of symptoms: weak social skills and exceptional capabilities in specific areas.
Little professor or geek?
Parents prefer to think of Asperger’s as Little Professor Syndrome. Gym class bullies call it "the geek disease." Those who actually have the syndrome sometimes refer to themselves as "Aspies."
"Some of the children with Asperger Syndrome have a little professor-like quality to them, such as enjoying lecturing others on subjects of their own—often arcane—interests, or talking like an adult," explains Dr. Dana M. Brazdziunas, director of developmental and behavioral pediatrics at Children’s Memorial Hospital.
But not all the children with Asperger’s fit the lecturer role, she says.
"Some children with Asperger’s are academically very bright and often clumsy, leading to the ‘geek’ stereotype. The truth is that all children with Asperger Syndrome are different and many do not fit the stereotype," Brazdziunas says.
In 1994, Asperger Syndrome was classified by the American Psychiatric Association as a disorder separate from autism. But many professionals, including Brazdziunas, still consider it one of the autism spectrum disorders.
"It is similar to autism and shares similar behavioral characteristics, such as poor social interaction skills and tendency to engage in repetitive activities or obsessive interests," she says. "However, children with Asperger Syndrome have normal language skills while those with autism (sometimes) do not."
The syndrome strikes mostly boys. With a stronger genetic link than other forms of autism, about a third of the fathers and brothers of children with Asperger’s share the defining traits. Those with Asperger Syndrome often also have obsessive-compulsive, attention and bipolar disorders.
For a person with Asperger Syndrome, interacting with people and coping with everyday life demands unrelenting effort. Asperger’s children (and adults) have trouble telling what’s interesting to others. So they make themselves unpopular by talking on and on about things everyone else finds tiresome.
Extreme sensitivity and reactions to light, sound, touch and taste are common characteristics among people with Asperger’s. Because they have a literal way of interpreting language, they don’t get jokes. They tend to be self-focused.
Yet, unlike with more pronounced autism, kids don’t have trouble learning or using language. They can dress, bathe and feed themselves like any other child. They are curious about the world around them just like other children. It’s a set of perceptual and social problems that easily can fly under the radar of parents, teachers and even psychologists.
When Beth Arias first took Alex to a psychologist for testing, the doctor offered a simplistic analysis that still makes her see red. If there were 20 kids in the room, the doctor told her, Alex would be "the weird one."
"Everybody can accept it if a child is autistic. It’s obvious there’s something very wrong there," Beth Arias says. "But with Asperger’s it’s harder to sympathize. It’s easy to see it as a behavior issue."
The blunders that provoke such irritation in adults and playmates often camouflage exceptional talents. Gifted children with Asperger’s can be thrown away as social outcasts. Teachers and even family members who have no inkling what is going on may simply write off a young Aspie as a problem child.
Some of Beth Aria’s relatives, for example, suggest her parenting skills could stand improvement. They sometimes ask that Alex not attend family functions. His grandma won’t baby-sit.
"It’s just that people don’t know about this," Beth says.
Kids with Asperger Syndrome want to have friends but have repeated experience of failing at it, Brazdziunas says. One reason is they can’t read nonverbal cues. "It is as if you were in a foreign country and understood only half of what was said to you."
Class without stress
With special understanding and customized education, the youngsters can make the most of their exceptional talents and abilities.
In a class designed for school kids with Asperger’s, such as the one at Central Community School District near Clifton, quiet comforting music plays and soft lamps replace bright overhead lighting. Blankets, pillows and cozy chairs are curtained off from the teaching area. Special education teacher Sharon Oncken gives directions in a deliberate monotone that muffles any trace of emotion.
Oncken, who has spent much of her two decades in teaching as a specialist for emotionally impaired children, knows the way to teach these children is to keep stress to a minimum. Her class is most productive with a strict routine and no distractions.
Asperger’s students have the mental power to succeed academically, Oncken says, but they lack the emotional stamina to cope. Constantly frazzled by signals from their environment and social interactions, they become overwhelmed when what happens doesn’t jive with what they expect.
For Randy Charley, now a freshman at Bourbonnais Community High School, getting a one-on-one personal aide was the key to success in school.
This year, he tested out of high school biology and is poised to take on chemistry and physics. He’ll be taking driver’s education next year.
"The aide takes the fear out of being picked on," says his grandmother Linda Charley. "For him, that was just the turning point."
The family haggled with the school district for years to get the aide, but they have no doubt it was worth the battle. School administrators should take a lesson, the Charleys say.
"If the school spends the money, they can see huge changes and won’t have to deal with all these behavior problems and frustrated parents year after year," Linda Charley says.
Caregivers need to not only cultivate patience, but also somehow find time to take care of themselves, Brazdziunas advises.
"Raising a child with Asperger Syndrome is one of the most difficult of parenting challenges," she says. "Have hope and do not give up—it makes a huge difference."
Signs of Asperger Syndrome
• Abnormal nonverbal communication, such as problems with eye contact, facial expressions, body postures
• Failure to develop peer relationships. Being singled out by other children as "weird" or "strange"
• Markedly impaired expression of pleasure in other people’s happiness and inability to return social or emotional feelings
• Inflexibility about specific routines or rituals, repetitive finger flapping, twisting or whole body movements
• Unusually intense preoccupation with narrow areas of interest, such as obsession with train schedules, phone books or collections of objects