Mild form of autisim hurts social skills

By Sherry Jacobson, Dallas Morning News

DALLAS -- In most ways, Ryan Mandell's life is typical of a 15-year-old boy's.

He loves video games and chatting on the computer. He enjoys teasing his 17-year-old sister. He is an enthusiastic collector of gory action figures based on his favorite movie characters.

Gesturing broadly, Ryan describes how he has become an expert on these 6-inch plastic figures and how he even follows the financial dealings of the figures' manufacturer.

Sometimes he stays up all night swapping information with other toy collectors on computer message boards.

But when asked if he has any friends his age, the usually talkative teen squirms in his seat.

"Maybe one," Ryan says, offering the name of a childhood friend but failing to recollect if he has spoken to the boy in the past year.

"Friendship to me is like pressure," he explains quietly. "It's like work, like I've got to call this guy so he doesn't think I'm forgetting about him. I prefer this. I mean seriously, resting on the couch is my best friend."

The lack of contact with people his age is Ryan Mandell's accommodation to having a mild form of autism called Asperger syndrome, say his parents, Robert and Nancy Mandell, who are home-schooling him in Plano, Texas. After years of struggling to figure out why Ryan could not fit in with other children, they say it was almost a relief when he was diagnosed with this neurological disorder at age 11.

Asperger syndrome, which most often is diagnosed at age 6 or older, is more complicated than simply not having friends. Usually, children with this disorder have serious problems with communication that requires using nonverbal social cues, such as reading someone's facial expressions. Such children also lag in simple motor skills such as being able to run. And, like Ryan, most develop an obsessive focus on a narrow interest.

Experts say children with Asperger syndrome, or Asperger's, have constant problems because they misunderstand social cues and often overreact, throwing tantrums or sometimes even striking out at others. Their frustration often arises from an inability to think abstractly and a tendency to misunderstand common figures of speech, say the experts. For example, when someone tells a child with Asperger's to "wait a minute," the child may walk away after one minute without a second thought.

The syndrome strikes mostly boys -- one in four sufferers is female -- and so far, no one can explain why. Some researchers wonder whether clinicians simply are more attuned to the disorder among boys than girls. And many doctors overlook Asperger symptoms altogether.

"We know it's helpful to diagnose them young and to intervene with treatment as early as possible," says Cheryl Trepagnier, an autism researcher at The Catholic University of America in Washington, D.C. She is helping to design an instrument that will teach autistic children to focus on people's faces as a way to understand someone else's emotions.

No one knows what causes Asperger syndrome although, as with the other autistic disorders, scientists think that both genetic and environmental factors may play a role.

Children aren't the only ones who have Asperger's, of course. As the word has spread about the disorder, adults have come to recognize themselves in its description, which includes a tendency to avoid eye contact with people, and an obsession with certain inanimate objects, often manifested by amassing large collections. Many adult sufferers end up working with computers or holding jobs that require little interaction with people.

"They would rather be isolated and be left alone in their own world," says Gail McGee, an autism researcher at the Emory Autism Center at Emory University's School of Medicine in Atlanta. "But with (Asperger's) children you want to teach them to be involved with other children and teach them appropriate social skills. And you can't do it if you leave them alone."

Research has shown that these children usually require formal instruction to learn how to express their feelings, how to give and accept praise, how to apologize and even how to take turns in a conversation.

"Asperger syndrome and ADHD (attention deficit-hyperactivity disorder) were the fastest-growing diagnoses in the 1990s," says Karen Campbell, autism consultant for the state's Education Service Center in Region 10, which includes Dallas.

It is not known how many children in the United States have Asperger syndrome or how many fall within the larger category of autism spectrum disorders, according to the U.S. Centers for Disease Control and Prevention.

The Mandells say they could probably write a book about the trials and tribulations of having a child with undiagnosed Asperger's.

"We kept trying so many different things because we didn't know why Ryan couldn't fit into a regular classroom," Nancy. Mandell recalls. When the Mandells sought professional help for Ryan, he was diagnosed with a series of disorders including anxiety, depression, emotional disturbance, dyslexia and learning disabilities.

"He was never a troublemaker," recalls his father, a Dallas psychotherapist. "He needed a predictable environment. There were just certain anxious characteristics that kicked in when there was no sense of predictability in his environment, when he had no sense of control." Ryan has taken medication to reduce anxiety and depression along with being placed in special education programs. But they did not work consistently for him, say the Mandells.

Finally when he was 11, the Mandells took Ryan to the Connection Center in Houston, where Rachelle K. Sheely, a clinical psychologist who specializes in autistic disorders, diagnosed him with Asperger's. In her report, Dr. Sheely noted that Ryan was unable to take cues from her facial expressions in order to understand, for example, when she wanted him to stop talking.

"Emotional attunement is basic to the ability to form relationships," she wrote in her assessment of Ryan.

Two years ago, the Mandells decided to take Ryan out of public school and teach him at home.

As he reached adolescence, his anxiety often turned to despair despite the medication and the cooperation of school officials in designing a special program for him.

"Ryan has just had the best year of his life," his mother says of how the home-schooling arrangement is working. "My hopes for his future are that he will go to college someday, get married, have a family and maybe even have a friend."