A life out of sync: Asperger syndrome

By Seattle Times staff and news services

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Ashton Smith knew he didn't fit in.

The 16-year-old Mountlake Terrace boy couldn't make friends. The jokes, camaraderie and easy conversation typical of teenagers were beyond his grasp. The social cues that guide most people through the world were as impenetrable to him as a concrete wall.

The problems are typical for people like Smith, who suffer from Asperger syndrome, a neurological malady that dooms many of its victims to a lonely life and dead-end jobs despite higher-than-average intelligence.

In Smith's case, the condition, a form of autism, may have been a factor in his death earlier this month.

More than five weeks after his mother reported him missing, the boy's body was discovered in the woods near their apartment. He was shot once in the head by a handgun that lay at his side. (See related story.)

Though police haven't determined whether the death was suicide or homicide, Smith's parents said he had been depressed and had tried to kill himself once before.

Asperger resources • The University of Washington Autism Center offers diagnosis and treatment: depts.washington.edu/uwautism/, or phone: 206-221-6806; e-mail: leenk@u.washington.edu   • Information on KidTalk, an online program developed by the University of Washington and Microsoft for youngsters with Asperger is available at the UW address above. • The Web site Asperger Northwest lists support groups and programs: aspergersnw.tripod.com • The Seattle Asperger Syndrome Education and Support Group meets monthly. For more information or details on "Gift of Gab" classes to help teens and adults learn to converse, read moods and body language, contact Karen Roe, 206-782-2232 or fishmama@qwest.net • The Seattle Asperger Parent Support Group holds meetings and publishes a newsletter. Contact the group at: seattleaspergers@yahoo.com. • Information about a national organization, the Asperger Syndrome Coalition of the United States, can be found at: www.asperger.org. Reading materials "A Parent's Guide to Asperger Syndrome and High-Functioning Autism" by Sally Ozonoff, James McPartland and Geraldine Dawson (Guilford Press). "Asperger Syndrome, the Universe and Everything" by Kenneth Hall (Jessica Kingsley Publishers). "Asperger Syndrome & Your Child: A Parent's Guide" by Dr. Michael D. Powers (HarperResource). "Eating an Artichoke: A Mother's Perspective on Asperger Syndrome" by Echo R. Fling and Tony Attwood (Jessica Kingsley). "Asperger Syndrome and Adolescence: Helping Preteens and Teens Get Ready for the Real World" by Dr. Teresa Bolick (Fair Winds). "Asperger Syndrome and Adolescence: Practical Solutions for School Success" by Brenda Smith Myles and Diane Adreon (Autism Asperger Publishing Co.). "Freaks, Geeks and Asperger Syndrome: A User Guide to Adolescence" by Luke Jackson and Tony Attwood (Jessica Kingsley). "Finding Ben: A Mother's Journey Through the Maze of Asperger" by Barbara LaSalle (McGraw-Hill).

"I hope this will bring to light how isolated these kids are and how misunderstood," said Helen Powell, who runs the Asperger Support Network in Seattle. "Their world can look pretty bleak."

Threats of suicide are very common, even among youngsters, said Powell, whose 17-year-old son has Asperger syndrome. "I've heard it from 4- and 5-year-olds."

Until nine years ago, the disorder went unrecognized, and kids who had it were simply labeled "weird."

"When the diagnosis became official in 1994, schools finally had a place to put that 'weird' kid they'd been diagnosing with ADD (attention-deficit disorder) or whatever," said Mary Meyer, whose daughter has Asperger and who heads the adult chapter of the Asperger Syndrome Education Network in Northern New Jersey, where she lives.

An estimated one out of every 1,000 people suffers from the syndrome, named for the Austrian pediatrician who first described it in 1944. Much progress has been made in identifying children with the disorder, but there remain thousands of adults who were never correctly diagnosed.

Meyer's 28-year-old daughter, Susan, saw psychiatrists from the age of 5 but was only given a name for her problem when she was in college. By that time, the young woman was seriously depressed.

Every week now, Susan Meyer attends a social-skills group at West Bergen Mental Healthcare in Ridgewood, N.J.

Karen Roe started the Seattle Asperger Syndrome Education and Support Group five years ago after struggling with the condition herself and watching her son, now 11, face the same social awkwardness that set her apart from others.

"I always felt like I didn't belong on the same planet," she said.

Roe, who became a counselor specializing in Asperger, offers an intensive training program called "The Gift of Gab" to help teens and adults learn how to converse more easily and read other people's body language and moods.

People with Asperger are often particularly competent in high-tech fields. In 2001, Wired magazine ran an article suggesting that the couplings of technologically brilliant but socially inept people may be to blame for huge increases in the number of children with Asperger syndrome and autism in areas such as California's Silicon Valley.

Roe says her training program is particularly useful for people who hold jobs at Boeing, Microsoft and other Northwest technology companies.

"They can often get the job," she said, "but it's hard for them to hold it because of their difficulty with communication and social skills."

Movies with no sound

Dr. Jeanne Marron, clinical director for Asperger services at West Bergen, said the above-average intelligence of most of her clients makes it possible to teach them how to read and react to social cues, an instinctive skill they lack.

For example, she shows them movies with the sound turned down, guiding them to examine the changes in people's expressions during emotional scenes. "One study showed that people in the (Asperger) spectrum only focused on the mouth, whereas most people scan the eyes and the entire face," Marron said. "We get them to do this."

Susan Meyer said this training has helped her "become better at dealing with people who are angry or have different opinions than I do."

Researchers at the University of Washington's Autism Center are investigating whether it's possible to "switch on" brain regions involved in recognizing faces and reading expressions, which generally show very little activity in people with Asperger. In the project, which is just getting started, children are repeatedly shown photographs and coached on what to look for, said center director Geraldine Dawson, co-author of "A Parent's Guide to Asperger Syndrome and High-Functioning Autism." Later, their brains will be scanned again to see if activity levels have increased.

Characteristics of Asperger syndrome • Extreme inability to interpret social cues. • Difficulty understanding other people's feelings. • Difficulty judging personal space; motor clumsiness. • Marked impairment in the use of multiple nonverbal behaviors such as eye gaze, facial expression, body posture and gestures to regulate social interaction. • Difficulty in developing age-appropriate peer relationships. • Hypersensitivity to loud noises, clothing, food textures and odors. • Impaired speech and language skills in volume, intonation, inflection and rhythm; may exhibit "professorial" speaking style. • Inflexible or obsessive adherence to routines; repetitive behaviors. • Preoccupation with a particular subject to the exclusion of all others. • Socially and emotionally inappropriate responses. • Strong sense of honesty, justice and fairness. • A desire to be helpful, obedient and accommodating. • Strong ties to home and family. • Creativity in several areas of interest. • Uncompromising principles. • High personal standards. • Good organization skills.

Thus far, genetic research has revealed no medical answer to the disorder, although MRI scans show significant differences in nerve-cell connections in the brains of people with Asperger syndrome.

In the meantime, "education and support are the interventions of choice," said Peter Gerhardt, executive director of Nassau/Suffolk Services for Autism in New Jersey. "With adults, it runs the gamut from how to get a job to how to avoid being a victim of sexual abuse."

Without an ability to understand subtleties in conversation and body language, it's easy to get taken advantage of, emotionally and physically.

Gerhardt was formerly at Rutgers' Douglass College, where he formed a social-skills group that Susan Meyer attended. He dubbed the group "Aspies With an Attitude."

Bestowing this nickname, said Mary Meyer, "was an incredibly important way to help them form an identity, a sense of belonging and self-esteem — even though it's a strange kind of belonging."

Gerhardt said his mission is to raise awareness about his patients. "I present their stories at autism conferences, to get the message out about who they are, and that they are interesting and should be valued," he said.

Dawson, who directs the UW's center, said she also emphasizes the positive qualities of Asperger syndrome in her book. Many "Aspies" possess an amazing capacity for visualization that makes them well-suited to engineering, architecture and art. And their ability to memorize staggering amounts of information is a skill many envy.

"Instead of just focusing on the challenges, we're just as interested in the unique traits and capabilities," Dawson said.

A virtual birthday party

An online program called KidTalk developed by the University of Washington and Microsoft aims to relieve the isolation of youngsters with Asperger by offering a nonthreatening environment where they can converse by computer. The program presents social situations, such as a birthday party, then guides kids through the intricacies of the social interactions through a chat-room format. A trained therapist "listens in," offering private tips and comments to help children interact more smoothly.

"It can be easier for kids with Asperger to have more intimate and deep relationships by computer, when they're not overwhelmed by face-to-face interaction," Dawson said.

Two other vast challenges remain for adult Aspies: employment and housing.

"James," 46, lives with his widowed father and cannot hold a job despite his genius IQ. He spends his days in front of the TV and the computer, reading Old English literature and leaving the house only for martial-arts classes. His father, "Dave," worries that when he dies, James will have nowhere to go and no means of support.

"He can take care of himself, and he can drive, but he doesn't have economic self-sufficiency and can't plan ahead," Dave said.

With Marron's help, James has been learning how to prepare for job interviews. Some Aspies also need her help making sure they have a working atmosphere free of loud noises or flashing lights. "I think for our higher-functioning people, there is hope of getting a meaningful job," Marron said.

Susan Meyer longed to become a teacher, but she fears that's not possible. Instead, after several unfulfilling part-time jobs, this college graduate is looking into training as a locksmith.

Marron said the health-care center is seeking funding for a residential program where staff members would check in regularly, monitoring the budgeting and housekeeping tasks that often prove difficult for people with Asperger.

"My long-range goal is to help every one of these Aspies have as productive a life as possible," said Mary Meyer. "So many of them could make such a wonderful contribution to society."

This story was written by Abigail Leichman of The Record (Bergen County, N.J.) with Washington state information contributed by Seattle Times staff reporter Sandi Doughton.