"Don't step on that—it's not a rug!" warns Kiriana Cowansage. It's a 9,000-piece puzzle of the astrological heavens, half completed, which she's putting together on the floor of her brightly colored studio apartment in Manhattan's West Village.
Kiriana, a 24-year-old graduate student, is enamored of details. She's also easily absorbed: A week earlier, she worked on the puzzle for 10 straight hours, without pausing for so much as a sip of water. A clothing maven, she's fashionably put together in chunky jewelry and a black minidress with billowing sleeves. But she'd rather stay home with those cardboard pieces than dress up for a night out. She's pretty—slender and pale, with innocently round eyes and long brown hair—and yet she's never had a boyfriend. Though smart enough to have earned herself a spot in a top neuroscience program, she often gets lost in her own neighborhood.
Such perplexing contradictions are the hallmarks of Asperger's Syndrome (AS), with which Kiriana was diagnosed when she was 19. AS is a condition on the high-functioning end of the autism spectrum. Its sufferers are successful in many realms of life but tend to have obsessive interests. They have trouble reading people and connecting with them. And they can have faulty sensory processing systems that leave them confused in hectic or unfamiliar settings.
Kiriana fits the AS profile quite neatly. What makes her exceptional is her gender. While the overall prevalence of Asperger's is 20 to 25 per 10,000 children, it's much more common in boys than girls. We don't understand what causes autism and Asperger's, or why more boys have these syndromes than girls, but some scientists conceive of them as expressions of extreme "maleness"—a talent for systemizing as opposed to empathizing.
Other experts attribute some of the gender gap to the widespread misdiagnosis of girls. "Girls are pretty neglected," says Shana Nichols, who specializes in treating girls with AS. Most of what we know about the condition is based on research on boys; theories about how it manifests itself differently in girls stem mainly from anecdotal evidence. Researchers agree that girls with AS tend to be more anxious and less aggressive than the boys. And during their teenage years, they are at an increased risk for awkward sexual situations and even date rape because of their inability to interpret social cues and their tendency to take statements literally.
When Kiriana was 2, her mother, Melissa, an English teacher, thought she was gifted because of her verbal precocity and started a diary of her toddler's amusing comments such as, "A bee fell out of my mind. What's a mind?" But Kiriana had an aggressive streak that was less endearing. One entry notes how she "tried to find a picture in the encyclopedia of an animal attacking a person, chewing him, and leaving the bones." Another reads: "When not allowed to do something, she screams in a piercing falsetto."
When she was 4, Kiriana became infatuated with dinosaurs. It was merely the first in a long series of obsessions. Once every picture in The Wonderful World of Prehistoric Animals by William Egan Swinton was emblazoned in her mind, she moved on to poisonous insects, then reptiles—a phase her mother nurtured by sending her to a lizard-themed summer camp.
In school, Kiriana barely spoke at all. One teacher feared she was deaf. "She pretty much refused to interact with other kids," says Melissa. She was often distracted—but not in the ricocheting manner of a kid with an attention-deficit disorder. "When the teacher called on me, I was frozen," recalls Kiriana. "I was often accused of not paying attention or of being on a different planet, but I was actually paying close attention to something else."
Since teachers are unlikely to flag kids who excel in written work no matter how quiet they are, many girls with AS are overlooked for special education, says Michael John Carley, director of GRASP, a supportive network for people with AS.
One teacher noted that "Kiriana had many problems learning the square dances and musical games. Changing direction or actions at musical cues appeared to be quite difficult for her." Struggles with spatial orientation earned her scorn on the playground; lacking an intuitive sense of direction, she repeatedly kicked the ball into her own team's goal. She eventually refused to play at all. She also refused to call any of her classmates by their nicknames, because it seemed too familiar. "It was like I had an alien complex," she says. "The result was that they treated me like an alien."
At the behest of a teacher at her private elementary school, Kiriana finally did get tested for disabilities. The results were inconclusive, and no one suspected autism in any form. "I knew she felt a little different," says Melissa. "But I never really thought anything was wrong with her."
Girls are generally recognized as superior mimics, says Tony Attwood, a pioneering Asperger's researcher. Those with AS hold back and observe until they learn the "rules," then imitate their way through social situations. But for a girl like Kiriana with undiagnosed Asperger's, her ability to manage her symptoms better than a boy can be less than a blessing; often it's a curse that keeps her suffering in silence.
"Girls can fake it quite well," says Liane Willey, a psycholinguist with AS who describes how she assumes different personalities when switching social gears in her autobiography, Pretending to Be Normal.
Tags:
asperger,
autism spectrum,
brain,
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gender gap,
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long brown hair,
maleness,
many realms,
minidress,
neuroscience,
neuroscience program,
piece puzzle,
processing systems,
sensory,
shana,
straight hours,
studio apartment,
syndromes,
trouble reading,
unfamiliar settings
