- The Washington Times - Saturday, February 14, 2004

Patrick McCardell feels safe at the mall. It may be the symmetry of the shopping bags he collects, or it may be the soothing sounds of the fountain. Perhaps it is the orderly fashion in which the stores are laid out, stretching in many directions like neat rows of dominoes.

In any event, the mall is the 14-year-old’s favorite place and favorite subject. School? Not so much. Popular music? The teenage pursuit of going along with the crowd? They mean nothing. The number of stores at the Mall in Columbia? Now that is interesting, Patrick says.

“This one has 217 stores,” Patrick recounts while sitting by a fountain there one recent Saturday. “There is a new mall going up in Cecil County that will have almost 500 stores. They changed the fountain here. It used to have steps all around. They have to paint it every year.”

Patrick, who lives in Columbia, Md., has Asperger’s syndrome. Asperger’s is a developmental disorder that was identified by Dr. Hans Asperger, an Austrian pediatrician, in the 1940s but only became a legitimate diagnosis in the American psychiatric community a decade ago. Asperger’s, a segment of the autism spectrum, is marked by impaired social skills, odd speech patterns, difficulty reading nonverbal communication and, sometimes, an intense absorption in a particular subject.

Asperger’s differs from classic autism in that Asperger’s children are generally of normal — sometimes even advanced — intelligence, says Stewart Mostofsky, a pediatric developmental neurologist with the Kennedy Krieger Institute in Baltimore. They also do not have the lag in language skills that doctors see in children with autism.

That is why children with Asperger’s are often not diagnosed until they reach school age, Dr. Mostofsky says.

“Autism is a significant delay that is picked up [by doctors] around age 2 or 3,” he says. “Asperger’s is different because there is not the history of early delays. It is not until they are in situations with a lot of social interaction that the repetitive, overfocused behavior is noticed.”

A generation ago, people with Asperger’s might have been called quirky. Now, about one in 5,000 people is estimated to have the disorder, says Brenda Smith Myles, associate professor of special education at the University of Kansas and author of several books on Asperger’s.

“It is hard to count the number of people who have Asperger’s because many people are never diagnosed,” Ms. Smith Myles says.

It also is hard to say what causes Asperger’s, says Fred R. Volkmar, professor of child psychiatry and pediatrics at Yale University and one of the leading researchers on the disorder. Dr. Volkmar says he believes there is a genetic component.

“If you look at a child with Asperger’s, usually about one-third of his immediate family members will have similar difficulties,” Dr. Volkmar says.

Dr. Volkmar and researchers at Yale recently found that magnetic resonance imaging (MRI) scans of the brains of people with Asperger’s differed from MRI scans of a typical brain. When most people look at a face, certain areas of the brain are activated in a way that differs from when they look at an object. People with Asperger’s, however, read a face the same way they read an inanimate object, the researchers say.

That might explain why a lack of empathy is a marker of Asperger’s. Or why a typical Asperger’s child will interrupt a conversation with facts about his pet interest. Or why figures of speech such as “keep your eye on the ball” can be baffling to a literal-thinking Asperger’s child.

It also can be why Patrick McCardell’s mother says her family feels isolated.

“Our extended family and friends don’t comprehend that Patrick has a significant disability,” says Patrick’s mother, Genevieve McCardell. “They misunderstand his lack of social skills as rudeness. Just because he doesn’t seem disabled because of his extensive vocabulary doesn’t mean he is not impaired. To have a child who has not been invited to a birthday party since he was 3 years old is very sad.”

Reading social cues

Even within Asperger’s, there are varying levels of severity. Take Michael Currier, 12, of New Carrollton. Michael seems very much a typical middle school student. He likes complicated computer games, playing with his pet dog and cat, and hanging out with a few close friends. He uses words like “apocalyptic” to describe a difficult day at school. His IQ places him in the gifted range.

Look closer, though, and the Asperger’s tendencies are there, says his father, Jonathan Currier. Mr. Currier recalls the early signs of Asperger’s in their house.

“Michael would walk up to people and speak to them like they were old friends,” Mr. Currier says. “He just didn’t seem to have a sense of social boundaries. He would often get into trouble at school for getting into tussles with kids or doing peculiar things. Then it was obvious he became fairly unhappy, his grades dropped, and he was getting a lot of teasing from other kids. But even when he talked about it, there was a certain emotional distance.”

Michael eventually was diagnosed formally at age 9 by a psychiatrist as having a mild form of Asperger’s. Since then, Mr. Currier, his wife, Ann Wheaton, and their older son, Alex, 16, have learned to work with Asperger’s rather than against it.

For instance, Michael has a need for order, his father says. Spontaneity is something he resists, so his parents usually brief him in advance if there is going to be a change.

That need for structure can wreak havoc on homework, Ms. Wheaton says. Trying to organize thoughts on paper can be difficult for Michael.

“One of our frustrations is how can Michael test in the 98 percentile in math and English and not be able to write three paragraphs?” Ms. Wheaton says.

Michael has an IEP — an Individualized Education Program — on file at Kenmoor Middle School. It states that he can be given extra time to do certain assignments or that he can dictate writing assignments to his mother.

He is an active member of the Boy Scouts, which is good for him because it is an organized, structured social situation, Mr. Currier says.

“Michael is a fairly good-natured kid,” Mr. Currier says. “He just has a hard time figuring out those boundaries.”

Mr. Currier and Ms. Wheaton see Asperger’s showing up in touching ways in their son, too. Michael may have trouble reading people, but he is acutely in tune with animals.

“It has long puzzled us,” says Mr. Currier, who is an Episcopal priest. “When he was a little kid, we were unable to really connect emotionally. We went to a train museum, and there was none of the joy of ‘I’m doing this with my dad.’ Yet Michael had this passionate attachment to the dog and to his hamsters. I think it is easier for him to connect with those who have simpler emotions to understand.”

Because there is no cure for Asperger’s, management techniques are the best way to deal with the situation, Ms. Smith Myles says. That includes making adjustments at home and at school. Many children with Asperger’s fall into a sort of educational no-man’s land — they are too high-functioning for special education classes yet still have a disability that must be addressed.

“What we are seeing is that the general education community is not prepared enough to work with kids with Asperger’s,” she says. “Parents have to be the educators of the educators.”

Ms. Smith Myles says asking for individual exceptions — as the Currier family has done — is a good plan.

“Removing handwriting demands is a good one, as Asperger’s kids universally have fine-motor-skills issues,” she says. “You can ask to take tests orally, rather than written, or use a keyboard.”

However, the social-skills issues need just as much attention, Ms. Smith Myles says.

Dr. Mostofsky agrees. Much of what we learn — when to say “thank you,” for instance — is picked up unconsciously. An Asperger’s child might need instruction and reinforcement of the skills. That could come from formal social skills groups run by a counseling center or from structured, mainstream social activities such as Scouts or the chess club.

“You can give an Asperger’s child more declarative instructions on things one would do naturally,” Dr. Mostofsky says. “Then give him the opportunity to practice those skills in a group. There is no cure for Asperger’s. The cure is to try and improve social skills.”

There also is no way to abate the excessive interests that accompany some cases of Asperger’s. Doctors have seen a range of obsessions, from sharks to U.S. presidents to geography to ceiling fans. Dr. Mostofsky says one of his patients, a kindergarten-age girl, was captivated by PBS newscaster Jim Lehrer.

“She had an autographed picture of him,” Dr. Mostovsky says. “Why Jim Lehrer? Who knows.”

Ms. Smith Myles says parents and educators can use those special interests as motivational tools and role modeling.

She tells of one child who was captivated by the show “Who Wants to Be a Millionaire.” Ms. Smith Myles helped that child improve his social skills by mapping out how host Regis Philbin greeted the contestants. She printed out small “power cards” that illustrated for the child the four-step process Mr. Philbin used to greet a contestant, shake hands, look the contestant in the eye and then let go.

“I urged him to use Regis’ strategy,” Ms. Smith Myles says. “I’d rather use interests to their advantage instead of saying, ‘Don’t talk about it.’”

‘He’s my son’

Patrick McCardell is talking about the future. His eyes are serious behind his wire-rimmed glasses.

“I want to build the biggest mall in the world,” he says. “I’d have one level for nice stores, then another section for outlets. And maybe even a flea-market section. There would also be an amusement park and fountains — everything you can think of.”

His mother is not as excited.

“We are fearful that no one will understand or appreciate him,” says Mrs. McCardell, who works as a counselor with the Maryland Department of Juvenile Services. “We’re fearful he will live a lonely life or will not be able to take care of himself.”

The present isn’t a picnic, either, she says.

“A lot of what happens in middle school is social,” Mrs. McCardell says. “He can’t tell when someone is kidding or serious. He is a big guy, so some people are afraid of him, but some see him as a target.”

Patrick, who was diagnosed at age 4, has been through some social skills training and has an IEP. He has won several ribbons in Special Olympics horseback-riding competitions. An aide often takes Patrick where he wants to go after school — to the Mall in Columbia or Arundel Mills or Towson Town Center.

Meanwhile, Mrs. McCardell and her husband, Paul, are looking for signs of Asperger’s in their 2-year-old daughter, Molly. So far, Molly seems to be a happy, redheaded toddler on a normal developmental track.

“When Patrick was little, he would run right past me,” Mrs. McCardell says. “The baby runs right up to me. I didn’t get that with him. He will hug his sister and say, ‘Does she love me?’ but he doesn’t really understand what that means. I can’t guarantee his sister will have unconditional love for him.”

As parents, though, they have that unconditional love. So, for now, Mrs. McCardell will help her son stack his shopping-bag collection in his room. She will listen as Patrick talks about his plan for the biggest mall in the world.

“He’s my son,” she says. “I am interested in what he is interested in. I try to put it in perspective. I work with emotionally disturbed delinquents. If what my child is doing is filling up my house with shopping bags, then it could be a whole lot worse.”

MORE INFO:

BOOKS —

• “ASPERGER’S SYNDROME: A GUIDE FOR PARENTS AND PROFESSIONALS,” BY TONY ATTWOOD, JESSICA KINSGLEY PUBLISHERS, 1998. THIS BOOK BY PSYCHOLOGIST TONY ATTWOOD, A LONGTIME RESEARCHER AND AUTHOR ON THE SUBJECT, IS A GOOD OVERVIEW FOR PARENTS.

• “THE OASIS GUIDE TO ASPERGER SYNDROME: ADVICE, SUPPORT, INSIGHT AND INSPIRATION,” BY PATRICIA ROMANOWSKI BASHE AND BARBARA L. KIRBY, CROWN, 2001. THIS BOOK IS CO-AUTHORED IN PART BY THE FOUNDER OF THE ONLINE ASPERGER SYNDROME INFORMATION AND SUPPORT WEB SITE. IT HAS PRACTICAL IDEAS AND ADVICE FOR FAMILIES COPING WITH ASPERGER’S.

• “ASPERGER SYNDROME AND DIFFICULT MOMENTS: PRACTICAL SOLUTIONS FOR TANTRUMS, RAGE, AND MELTDOWNS,” BY BRENDA SMITH MYLES, AUTISM ASPERGER PUBLISHING, 2001. THIS BOOK HAS ADVICE FOR HANDLING SOCIAL AND BEHAVIORAL ISSUES.

ASSOCIATIONS —

• THE ASPERGER SYNDROME COALITION OF THE U.S., PO BOX 524, CROWN POINT, IN 46308. PHONE: 219/662-1311. WEB SITE: WWW.ASPERGER.ORG. THIS NONPROFIT ADVOCACY GROUP HAS NEWS AND EVENTS, RESEARCH INFORMATION, ANSWERS TO FREQUENTLY ASKED QUESTIONS, SUPPORT GROUP INFORMATION AND VOLUNTEER OPPORTUNITIES.

ONLINE —

• THE ONLINE ASPERGER SYNDROME INFORMATION AND SUPPORT SITE (WWW.UDEL.EDU/BKIRBY/ASPERGER), FOUNDED AND OPERATED BY BARBARA L. KIRBY, THE MOTHER OF A SON WITH ASPERGER’S, HAS EXTENSIVE RESEARCH INFORMATION, MESSAGE BOARDS, A BOOKSTORE, A GUIDE TO CAMPS AND SPECIAL PROGRAMS, AND OTHER INFORMATION.

• THE MARYLAND ASPERGER ADVOCACY AND SUPPORT GROUP SITE (WWW.ASPERGERS.ORG) HAS LINKS AND INFORMATION ON MANY LOCAL RESOURCES.

• THE YALE CHILD STUDY CENTER, ONE OF THE LEADING RESEARCH FACILITIES ON ASPERGER’S, HAS MANY RESOURCES ON ITS WEB SITE (WWW.MED.YALE.EDU/CHLDSTDY/AUTISM/ASPERGERS.HTML).

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