Meet Robert Vaughn, a 9-year-old with Asperger's syndrome who is fascinated by the details of astrophysics -- but can't have a simple conversation with another child.

Explaining Bizarre Behavior 
   
When Robert Vaughn's kindergarten teacher asked her 
students to name something larger than a TV, the 
precocious 5-year-old answered, "The entire universe." 
When she asked for something smaller than a TV, Robert 
replied, "The nucleus of a carbon atom." These aren't 
the responses you'd expect from a kindergartner, but 
as Robert's mother, Laurajean, points out, nothing 
about her son's development has ever been typical. 

"Intellectually, Robert is way beyond his peers," the 
Wallingford, Connecticut, mom says of her now-9-year-old 
son. "But he can't do many of the things they can do, 
and it's frustrating for him." He has never had a playdate, 
he's just learning how to initiate a conversation with 
other kids, and he even has trouble looking someone in 
the eye. 

Laurajean affectionately refers to her son as "the little 
professor." An energetic redhead with round glasses that 
he periodically pushes to the bridge of his nose with one 
finger, Robert speaks very rapidly. He tries to pack in as 
much information as possible about spaceships and galaxies, 
his current obsessions. "I prefer talking to adults more 
than children," Robert says matter-of-factly. "I like to 
monologue, and kids won't listen as long as adults will." 

Robert has Asperger's syndrome, a newly recognized 
developmental disorder that's related to autism. Most 
people -- including many doctors, psychologists, and 
educators -- know little, if anything, about it. Unlike 
most autistic children, kids with Asperger's often have 
advanced vocabularies that make them seem more gifted than 
disabled. But socially, they lack even the most basic 
skills. 

Explaining Bizarre Behavior The condition was first 
recognized in 1944 by Viennese pediatrician Hans Asperger, 
but his work was not introduced to the English-speaking 
world until the 1980s. Although Asperger's syndrome is still 
relatively rare, diagnosed cases have been on the rise since 
1994, when it was first included in the Diagnostic and 
Statistical Manual for Mental Disorders (the bible for 
the psychiatric profession). Studies suggest that anywhere 
between 1 in 500 and 1 in 10,000 people suffer from Asperger's,
and about eight out of nine people diagnosed with the disorder 
are boys. 

Some advocates believe an environmental factor may be 
contributing to the steady increase, but most experts argue 
that kids with Asperger's syndrome were simply not diagnosed-or 
were misdiagnosed- before the disorder became official. "These 
kids have always been here, but nobody knew what to do with 
them," says Australian psychologist Tony Attwood, Ph.D., author 
of Asperger's Syndrome: A Guide for Parents and Professionals 
(Taylor & Francis, 1997) and one of the world's leading experts 
on the disorder. 

Although Asperger's -- and autism in general -- was once believed 
by many doctors to be the result of poor parenting, scientists 
now know that it is caused by deficits or delays in the development 
of the part of the brain normally involved in social reasoning. 
"Most people know how to make friends, how to read a face, or 
how to respond to someone's feelings without even thinking," Dr. 
Attwood explains. "But children with Asperger's don't." 

In fact, researchers at Yale University School of Medicine, in 
New Haven, Connecticut, detected a difference between the MRI 
scans of brains of people with Asperger's syndrome and those of 
a typical brain. When most people look at a human face, a 
different area of the brain is activated than when they look 
at an object. But people with Asperger's perceive faces as if 
they were inanimate objects. 

That probably helps explains why kids with Asperger's syndrome 
lack empathy; they don't realize that other people may have 
thoughts and interests that are different from their own. They'll 
interrupt a conversation and start spewing out facts about their 
pet interest-which could be something as arcane as medieval 
history, deep-fat fryers, or ceiling fans -- even if it has 
nothing to do with what the other children are talking about. 

Not surprisingly, researchers are finding a genetic component 
to all autistic spectrum disorders. "If you have one autistic 
child, your chance of having another is 1 in 20," says Fred R. 
Volkmar, M.D., Ph.D., a professor of child psychiatry and 
pediatrics at Yale who is currently studying 900 families of 
children with Asperger's syndrome. "Although the definitive 
data has not come out yet, we think that 30 to 40 percent of 
the immediate family members of a person with the disorder 
have at least some social difficulties, if not full-blown 
Asperger's." Robert Vaughn's 16-year-old brother, Charles, 
also has Asperger's, and his 12-year-old brother, David, is 
a high-functioning autistic.

Diagnosis Can Be Difficult  
 
and have trouble writing. Some also have a hard time 
processing and integrating sensory information. For example, 
they may find it difficult to look at and listen to someone 
at the same time or be oversensitive to the feel of certain 
fabrics or the smell of certain foods. And like all autistic 
children, kids with Asperger's have trouble making transitions 
and are comforted by routine. 

Because Asperger's syndrome manifests itself in so many ways, 
it's not always easy to diagnose. The major obstacle is that 
the condition wasn't well-known when most of the doctors who 
practice today went to medical school, Dr. Volkmar explains. 
In addition, "these are very verbal kids," he says. "People 
assume that a person's verbal skills are representative of 
his general level of functioning, and so they think these 
kids are behaving badly on purpose." 

Children are commonly diagnosed at about age 8 or 9, but some 
slip through the cracks until adolescence. Part of the problem 
in di-agnosing Asperger's at a younger age is that all kids 
can exhibit some of the hallmark signs. "The fact that a 
3-year-old doesn't participate in group play or that a 
4-year-old is very interested in space travel doesn't mean 
he has Asperger's," says Michael D. Powers, Psy.D., director 
of the Center for Children With Special Needs, in Tolland, 
Connecticut, and editor of Children With Autism: A Parent's 
Guide (Woodbine House, 2000). You should be concerned only 
if your child has several of the characteristics (See Does 
Your Child Have Asperger's Syndrome) 

The Vaughns suspected Robert had a problem when his preschool 
teachers told them that he wasn't interacting with the other 
kids. Fortunately, because his brothers were already enrolled 
in Dr. Volkmar's study at Yale, Robert was identified at age 
5 as having some form of autistic disorder. 

However, in most parts of the country, experts on Asperger's 
syndrome are few and far between, and parents must embark 
on their own odyssey to find out what's wrong with their 
child. It took ten years for Ellie Churchill, of Wynnewood, 
Pennsylvania, now 16, to be accurately diagnosed. Her parents, 
Kathy Haley and Rick Churchill, had alternately been told 
that Ellie had ADD and needed Ritalin, that she was depressed 
and should take Prozac, and that she had autistic tendencies. 
"She's been evaluated four or five times by the school 
system," Haley says. "Had it been left to them, we'd probably 
never know she has Asperger's. They didn't even know what 
Asperger's was."  

A Parenting Challenge  
 
The general lack of awareness of Asperger's syndrome is 
probably the chief reason that it's so hard to parent a 
child with the disorder. "My kids were kicked out of two 
preschools because they had lots of tantrums, and the 
teachers couldn't handle them," says Carol Wilkerson, of 
Edwardsville, Illinois, who has 12-year-old twin boys 
with Asperger's. "The message you get from schools, 
grandparents, and neighbors is that you're a bad parent." 

Parents also quickly realize that the usual discipline 
techniques don't work with Asperger's children. "Before 
my son was diagnosed, I really thought that if I looked at 
him in a stern way and used that 'mom' tone of voice, he'd 
do what I said," says Patricia Romanowski Bashe, coauthor 
of The OASIS Guide to Asperger Syndrome (Crown, 2001). "But 
in fact, he didn't hear any difference in my tone of voice, 
and my threatening look meant absolutely nothing to him." 

Obsessive behavior is another difficult thing for parents 
to deal with. Because these children don't understand the 
social cues that dictate how people interact, the world 
seems chaotic to them, Dr. Attwood explains. Cataloging 
information about their specific interests is a way for 
them to make order out of chaos and cope with stress. 

Robert's obsessions have evolved over the years. "When 
he was 4, he loved tape measures," his mother recalls. 
"He liked pulling them out and then letting them snap 
back in." Over the years, he started collecting wire, 
ribbons, and metal rods, which he adds to a huge sculpture. 
In recent years, he's also become fascinated with Star 
Wars, spaceships, and cruise ships. His parents have 
their hands -- and their living room -- full because 
Robert's older brothers have their own obsessive pursuits. 
"You just do what you have to do in order to keep the 
peace," Laurajean says.  

Learning Social Skills  
 
Some children with Asperger's breeze through their first 
few years of school because of their advanced verbal skills. 
But about the time they get to third grade, other kids 
start noticing that they're different and often target 
them for teasing. Because kids with Asperger's don't always 
understand the implied meaning behind teachers' words 
(they take everything very literally), they may also be 
branded as defiant. One school psychologist recalls an 
incident in which a teacher told her class to sit down: 
Most of the students knew to return to their desks first, 
but the child with Asperger's just plopped down on the 
floor right where he was standing. 

Despite their neurological deficits, kids with Asperger's 
syndrome can be taught the social nuances that others learn 
intuitively. "They need social skills as a major part of 
their school curriculum," says Jeanne Angus, director of 
LearningSpring Academy, in New York City, one of the few 
schools created for kids with Asperger's. The classrooms 
have pictures of facial expressions on the walls, which 
are labeled with the emotions they represent, and teachers 
use mirrors to make students more aware of their own 
expressions. 

However, there are only a handful of these specialized 
schools, and most kids with Asperger's are too 
high-functioning to fit into traditional special-ed 
programs. Robert attends a public elementary school and, 
thanks to his mother's advocacy, works with various 
specialists to help him function in this mainstream 
setting. Slowly, as awareness of the disorder grows, 
parents are demanding that schools provide appropriate 
services for their children, and experts are training 
educators in how to best handle kids with the condition. 

A Brighter Future

Considering that today's young Asperger's sufferers are the 
first generation of kids who are being diagnosed and treated 
from an early age, doctors are optimistic. There are, after 
all, adults with Asperger's who have had successful careers, 
often in computer or science-related fields. "I feel like we 
have one foot in the dark and one in the light," Laurajean 
says. "When we got our oldest son's diagnosis ten years ago, 
they wished us good luck but didn't know where to send us. 
With Robert, we were able to intervene early, and he is doing 
so much better socially." Like other parents of Asperger's 
children, Laurajean can only hope that she and the schools 
are giving her kids the tools, the confidence, and the support 
they'll need to face a future in a world they're struggling 
to understand.  
 

Source: Parents.com Parents Magazine October 2001

Copyright © 2001 Lori Miller Kase.






 as of December 22, 2001