The facts and myths of Asperger's disorder

THE RECENT fatal stabbing of James Alenson, allegedly by a teenager living with Asperger's disorder, raises the issue of whether this tragedy is related to Asperger's.

Those of us who work with children with Asperger's worry that fingers will be pointed at individuals with the diagnosis. According to Dr. Daniel Rosenn, a Wellesley psychiatrist and founding member of the Asperger's Association of New England, no two children with this diagnosis are alike, and generally speaking this is not a dangerously violent group.

Asperger's disorder, a mild form of autism, entered the American psychiatric nomenclature in 1994.

Current prevalence estimates suggest that 1 in 166 children will have a diagnosis of an autistic spectrum disorder, with four times more boys than girls being diagnosed. These children have different learning styles and ways of social interaction. More than half have difficulty responding to sensory input, which may manifest as extreme sensitivity to sounds, touch, smells, and textures of food.

They frequently over react to common inconveniences, such as being bumped in the hallway at school, and may not understand the appropriate distance from others in social situations.

Most take much longer to develop "theory of mind," the ability to understand another person's perspective. They can misinterpret nonverbal cues or body language in conversation. All need to learn aspects of communication that come intuitively to their typically developing peers. Some do beautifully with early intervention and continued help with their social skills as they grow up. Most are of average or above average intelligence, and some are brilliant. All are quirky, sometimes in delightful ways, but often in ways that isolate them from their peers.

Individuals with Asperger's typically have intense "special interests" about which they collect voluminous information and talk repetitively without self-consciousness. For some children with the disorder, these are harmless obsessions about obscure topics such as the Civil War, the Titanic or magic cards. Like many teens, they can spend hours playing violent video games, but a boy with Asperger's may become more fixated upon and have less perspective about the games.

Today's teens with Asperger's are the first to reach the high school years with this diagnosis. They are the first to have reaped the benefits of the many therapies and interventions, including medications designed to foster their development or alleviate disturbing symptoms.

In her groups of young adults with Asperger's, most of whom were diagnosed in late adolescence or in their early 20s, Dania Jekel of the Asperger's Association of New England hears many stories of "overwhelming rage" at the memories of isolation and victimization by bullies during the middle and high school years.

Research shows that 3 out of 5 teens with Asperger's report being bullied at school, while 90 percent of their parents report that their children have been teased. Twenty percent of those studied changed schools because of bullying and a majority of parents report that no action was taken by school staff against the bully.

Adolescents with Asperger's may have additional, co-morbid psychiatric diagnoses such as Tourette's syndrome, bipolar disorder, attention deficit disorder, anxiety, depression or eating disorders.

While aggression and physical violence have not been considered hallmarks of Asperger's, we often hear from parents about stubbornness, rigidity, and high levels of anxiety. A typical American high school can be a stressful environment for someone with Asperger's. Many teens are hostile or indifferent to odd, eccentric peers.

As Rosenn has pointed out, the social demands of high school, such as flirting and dating, are often too much for adolescents with Asaperger's because they are frequently trying to figure out what a simple friendship is about. The intrusive sensory properties of large high schools, such as the public address system, the chaos of locker rooms and bathrooms, hallways, and cafeterias can completely overwhelm a child.

When their senses are overloaded, people with Asperger's can sometimes be quite reactive, even disruptive, though hardly ever dangerous. Unfortunately, they often do not understand the impact of their behaviors on others.

What do we learn from such tragedy and loss of life? We learn that we cannot control everything despite the absolute best of intentions, that no matter how intelligent a child with Asperger's is, he or she will need more support than a typical child for a much longer period of time . The stress on families is enormous.

One of the lessons we should learn from the Lincoln-Sudbury tragedy is that we should avoid the temptation to draw conclusions and stereotypes about children with Asperger's. And we can grieve the losses suffered by the Alensons, the Odgrens, and the Lincoln-Sudbury community.

Dr. Eileen Costello is a pediatrician and co author of "Quirky Kids: Understanding and Helping Your Child Who Doesn't Fit In."