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In a room on a high ridge overlooking the Santa Cruz Mountains in California, Leo Rosa is waking up. The sun breaks through a bank of coastal fog, filling his window with streaks of orange and crimson. A cherubic eleven-year-old with hazel eyes under a tuft of russet curls, he climbs out of bed to give his father a hug.
Leo’s father, Craig, produces science videos for KQED, a public TV station in San Francisco. Shannon Rosa is a blogger, editor, and software consultant. Each morning, they take turns helping their son get ready for school. The first thing that Leo does each day is read a list of icons taped to his door, which Shannon made for him by downloading and laminating clip art from the Internet. This list—his “visual schedule”—is written in a pictorial language that is easier for his mind to absorb than words. An image of a boy putting on his shoes prompts Leo to get dressed, followed by the likeness of a toothbrush, and then an icon of a boy making his bed.
Leo’s visual schedule parses the sprawling unpredictability of an eleven- year-old’s life into a series of discrete and manageable events. This helps him regulate his anxiety, which is a challenge for people on the spectrum at every age.
In a cluttered room down the hall, Leo’s sisters are also getting ready for the day. Zelly (short for Gisela, the name of Craig’s aunt) already has the poised, self-possessed air of the thoughtful young woman she’s becoming at thirteen. In a family of brazen eccentrics, she’s taken on the job of being the “normal” one. India, who is five years younger, exudes her own potent brand of charisma, but it’s more antic and subversive, with mischief and drama perpetually brewing in her bright green eyes behind thick glasses. While Zelly is generally reserved, India will walk right up to a stranger in a restaurant and say, “My, what a pretty dress you have!” She instinctively knows how to make herself the center of attention and work a crowd.
While eating breakfast with his sisters in the kitchen, Leo suddenly jumps down from his chair as an alarming expression—between terror and exhilaration—takes possession of his face. He bolts for the door but his father doesn’t flinch; instead, Craig calls after him in his softest voice, “Where ya goin’, buddy?”
Leo immediately sits down again and resumes eating as if nothing had happened. His first spoonful of yogurt this morning contains a crushed tablet of Risperdal, an atypical antipsychotic developed for the treatment of schizophrenia in adults. His parents don’t like the idea of giving him this powerful drug, but for now, it seems to be helping him get a handle on his most distressing behavior, which is teasing and bullying India. Leo has never quite forgiven her for being an unexpected intrusion into a world that he was just getting used to himself. One of the downsides of the drug is that it amplifies Leo’s already considerable appetite. His uncanny ability to snatch food from distant plates has earned him a family nickname: the Cobra. When Shannon brings bowls of oatmeal to the table, India quietly slides hers out of Cobra range and mutters under her breath, “This is mine.”
Suddenly Leo jumps up from the table again and says to his father, “Green straw?” It is not yet time for his first green straw of the day, but he will get one before the school bus pulls into the driveway—one of tens of thousands of wide, bright green Starbucks straws that Leo has used over the years for the purpose of stimming (self-stimulation), one of the things that autistic people do to regulate their anxiety. They also clearly enjoy it. When nonautistic people do it, it’s called fidgeting and it’s rarely considered pathological.
A red straw from Burger King can occasionally fit the bill, or a blue one from Peet’s. Clear straws from Costco just don’t cut it. But a green straw from Starbucks is Leo’s Platonic stim. If Shannon allowed him to do so, he would take a green straw to bed with him, or even better, a pair—one between his lips and the other in his toes. He would stim in the bath, on the toilet, and jumping on the trampoline.
Leo’s fascination with straws is a wonder to behold. First, he tears the coveted object free of its paper wrapper; then he wets his lips and starts nibbling along its length, palpating the stiff plastic to pliability; finally, he masticates it to a supple L-shaped curve. All the while, he’s twiddling the far end in his fingers, making it dance with a finesse that would be considered virtuosic if he was performing sleight-of-hand tricks. Watching Leo’s Ritual of Straws is like seeing one of W. C. Fields’s vaudeville routines with a hat and cane run at hyperspeed.
A few years ago, Shannon pulled the family minivan up to the entrance of Zelly’s summer camp, when Leo, with his usual exquisite timing, made it known that he had to pee. There were no bathrooms in the vicinity, so Shannon escorted her son behind a convenient bush and urged him to do his business as India and her pal Katie pretended not to watch. She assured the girls that peeing on school grounds was tolerated under certain circumstances, and even kind of cool. “Sometimes, when you’re a boy, it’s great,” she said. “You can pee in bushes all over the world!”
“And sometimes, when you’re a girl, you have a brother with autism,” India shot back. “And then your whole world changes.”
“Our therapeutic goal must be to teach the person how to bear their difficulties. Not to eliminate them for him, but to train the person to cope with special challenges with special strategies; to make the person aware not that they are ill, but that they are responsible for their lives.”Highlighted by 1,503 Kindle readers
