In many ways, Paul Griffin is typical of a talented college freshman.
A gifted artist, perceptive reader and nimble athlete who jumps horses competitively, Paul graduated from high school with a 3.8 grade-point average. He wants to join a fraternity and relishes — only half-jokingly — the thought of “girls and beer.”
Yet, if you talk to him for less than a minute, you realize something is amiss. Paul is one of eight freshmen at the University of California, Santa Barbara, who has been diagnosed with Asperger’s syndrome, a mild form of autism characterized by difficulties in social communication.
It is no accident that he and most of the others attend UCSB. Long a world leader on research for autism, the university is expanding its focus into the largely uncharted waters of Asperger’s.
For people with the disorder, the key to reducing suffering in later life is early intervention, researchers say. Research on the topic remains limited, however, and in many states, people with Asperger’s — unlike those with autism — do not qualify for government assistance to pay for home visits or behavioral therapy.
“It’s considered a more mild disability,” said Dr. Lynn Koegel, who, with her husband Bob, runs the UCSB Koegel Autism Center. “But it can be as big of an issue as any other disability. If a person can’t get a job or interact socially with other people, their choices are pretty limited.”
Last year, UCSB’s autism center received a nearly $1 million grant to create one of the first research centers for Asperger’s in the nation. In the past year, the center joined a handful of institutions — such as the Asperger’s Study Group at New Hampshire’s Keene State College — in the forefront of a neglected area of study.
In recent years, psychologists and public schools have gotten better at identifying children with autism. But Asperger’s remains elusive, as those who exhibit the traits tend to perform on par with or better than their peers academically. Their struggles tend to be strictly social, and as children, they tend to be quiet.
“It’s so common to see them walking around the playground, sitting alone in the library — anything that’s anti-social,” said Koegel. “The kids that are troublemakers — they have whole teams working on them. But the kids with Asperger’s, who don’t do any talking, often slip through the cracks.”
Sometimes, such people thrive, perhaps owing to their intense single-minded focus. Indeed, several famous people, alive and dead, are widely believed to be part of the Asperger’s club, including Microsoft founder Bill Gates; Craig Nicholls, frontman of the band The Vines; Andy Warhol; and Albert Einstein.
For most people with the disorder, however, the solitude over time can exact a toll. Adults with Asperger’s syndrome tend to suffer from loneliness or depression. Many never marry, and some never date, even though they’d like to.
With this in mind, the Eli and Edythe Broad Foundation asked the UCSB center to develop new treatment models that can eventually be used to help Asperger’s clients of all ages around the world.
In meeting Paul and his father, the first thing that stood out was Paul’s inflection, even in a downtown restaurant. Asked about the length of the drive from their home near the greater Los Angeles city of Thousand Oaks to Santa Barbara, Paul provided a monotone answer that everyone in the restaurant could hear: “Oh, I’d say about an hour or so!”
An amiable 19-year-old with an intense gaze, Paul clutched a little bag filled with shiny rocks as he talked. Occasionally he’d take one out and rub it — for good luck, he said. Sometimes, in the middle of a conversation, his eyes would drift dreamily toward a window. When this happened, his dad would gently bring him back into the discussion.
Although Paul can hold his own in a conversation, at times he veers onto strange tangents. While talking about his hopes and fears about college, for instance, Paul at one point got on the topic of world travel. He listed some of the places he’s visited with his family: Australia, England, Hong Kong, South Africa, Singapore.
“London is very clean,” he said. “Singapore also. In Singapore, if you do road rage, you get caned — which I like.”
Paul, who has his driver’s license, went on to describe an unpleasant experience in his hometown in which a motorist yelled at him at an intersection. “If that man had been in Singapore, he’d be caned, and he’d be crying like a little schoolgirl,” he said, loudly.
His dad interjected, in a soothing tone. “Paul, calm down. All you have to do is drive away — say, ‘I’m sorry,’ and just ride on.”
Paul responded, “Yeah, yeah. That’s what the nice thing about Singapore is.
Society Slow to Understand Asperger’s Syndrome
Asperger’s syndrome is named after the Austrian pediatrician Hans Asperger, who in the 1940s wrote a paper describing the “odd” behavior of four boys whom he referred to as “little professors.” In 1981, the term Asperger’s syndrome was coined by an English psychiatrist named Lorna Wing. Professionals, however, didn’t recognize it as an official neuropsychiatric disorder until 1994.
Over the years, many people with the disorder have been misdiagnosed as having depression, schizophrenia or attention-deficit disorder. Due to the past obscurity of Asperger’s, many of the newly diagnosed are adults.
A study of Finnish youth in the May 2007 issue of the Journal of the American Academy of Child & Adolescent Psychiatry found that about one in 400 children are diagnosed with Asperger’s. The majority are male.
Asperger’s clients tend to be flummoxed by the nuances of social interaction. While most have an average to above-average vocabulary, they often struggle with things like eye contact, facial expressions, slang and humor.
In addition to crippling their love lives, the disorder can ruin their careers (although the focus that accompanies the syndrome has proven positive in areas like information technology). A couple times a year, Koegel said, she receives a call from the county jail on behalf of a client with Asperger’s.
“Some adult that has Asperger’s will get antagonized at work and explode,” she said. “And just as bad are the calls from people who are saying they don’t have any friends or are having trouble getting jobs because they don’t come across well in the interview. They don’t understand what they are doing wrong.”
The Center
Founded in the early 1970s by Bob Koegel, the UCSB Koegel Autism Center marks the spot of the nation’s first special-education classroom for students with autism. (Lynn Koegel started working there in the late 1970s.) In the 1980s, actor Dustin Hoffman visited the center in his quest to nail down the lead part in the movie Rain Man, for which he earned an Academy Award. The movie is widely credited for introducing the concept of autism to mainstream America.
At the time of the center’s inception, most clinicians in the United States attributed the cause of the disorder to bad parenting and sent the vast majority of children with autism to mental institutions. Koegel, however, was convinced that those children could learn and therefore created the classroom.
The Koegels’ research gained steam and exposure as the number of children diagnosed with a form of autism mushroomed over 20 years from one in 10,000 children to the current one in 150.
Having developed a widely used technique called “pivotal response” treatment, in which children with autism are offered incentives, such as colored candy, to talk about certain things, such as their favorite color, the Koegels are now setting out to make similar advances on treating Asperger’s.
The students they are working with tend to be bright; many have aced their SATs. Still, they clearly will not be able to figure out on their own how to talk to people.
To help them, the Koegels this year began videotaping the students conversing with peers in a living room-type setting with couches and chairs.
Afterward, the students watch the tapes with researchers, who help highlight their strengths and gaffes, which range from being argumentative to consistently failing to fill long pauses. One young man was pleased to see that he scored well on being cordial (“I love Italian food,” “Hey, I do too”) but winced at the awkward silences that resulted from his failure to ever ask a question (“So, what’s your favorite restaurant?”). He also realized that he spoke in a monotonic voice.
For the next step, the Koegels will observe the students in a live social setting — in this case, a series of bowling outings. Ultimately, they hope to get the students to a point at which they have real friends and are dating.
For many, going from a laboratory setting to a budding relationship is a slow process, but some have already arrived.
One such student had tried to commit suicide several times before meeting with Lynn Koegel. Like many with Asperger’s, the student had no trouble with academics: He earned straight As but was virtually incapable of talking about anything besides his favorite movie.
As part of his therapy, Koegel began teaching the student how to hold a normal conversation. “If I said, ‘Oh, I had such a good lunch today,’ he had to say, ‘What did you have for lunch?’” she explained.
To be sure, his transformation was far from instantaneous. At one point, he seemed to have become a perfect conversationalist, but it turned out he only thrived in a clinical setting. This limitation became awkwardly apparent when Koegel commended his skills.
“He replied, ‘Yeah, but it’s easy with you, because you’re old,’” she said, laughing. “This happens a lot with people with Asperger’s. They might comment on skin color when it’s not appropriate, or weight. My feeling, or theory, is that they haven’t been socializing for that long, and the only way you learn to socialize is by socializing.”
Still, the student wound up putting his skills to good use: By the end of the year, he was dating.
A Little Professor
The program will also focus on younger children, who, to this day, are still often referred to by experts as “little professors.”
At a university summer camp, Koegel introduced Liam, a precocious 7-year-old with high-functioning autism. (Scientists debate whether high-functioning autism and Asperger’s are really the same thing.) Instead of saying “Hi,” Liam turned his hands into a telescope, closed one eye and began slowly scanning the clouds. Koegel coaxed him into saying hello. He complied, without making eye contact, and then informed me that, while Uranus has only 11 rings, Saturn has 10,000 or more.
He added, in a slow, meticulous cadence, that the rings of Uranus are vertical, not horizontal, as one might expect. “Some scientists believe that something hit (Uranus) that tipped it sideways,” he said, spreading his arms out and turning — like an airplane — to illustrate the tipping planet.
Did he like coming to the summer camp?
“Yes,” he said, “but there are nine planets in our solar system, not eight.” He was referring to the ongoing scientific argument about whether Pluto is a planet or just a moon.
How did he get to know so much about planets?
“Actually,” he answered, “I read a small book about each planet and different areas in space — even far out of our solar system.”
Then, abruptly, he turned around and ambled over to his mother without saying goodbye.
As he walked away, Koegel whispered, “Most kids going into second grade don’t start sentences with the word ‘actually.’”
Liam’s case seems to show how the line between Asperger’s syndrome and autism can be fuzzy.
Like many children with Asperger’s, Liam started reading extremely early, at age 2 or 3. (Most children don’t learn to read until, at the earliest, first or second grade.). In fact, at age 2, Liam could recite Robert Frost’s “Nothing Gold Can Stay.”
Still, when it came to practical communication, his language development was delayed — a key sign of autism.
“He had a big vocabulary; he could recite poetry,” said his mother, Kelley, who asked that her last name not be used. “But he couldn’t ask for a glass of juice.”
Meanwhile, as is the case with many Asperger’s patients, Liam’s interests are intensely narrow. Lately, he’s immersed himself in astronomy. Last year, geography: Liam could locate every country on a globe.
“He’s a little genius — that’s one of the problems,” Koegel said. “A lot of the kids aren’t interested in ancient Egypt.”
