This is a story of autism in small-town America Rural living can be wonderful: community, friendly faces, a slower pace of life. But when there’s autism in the family, it can be tough.
Morning circle is off to a rough start at LilyPad Learning Center. On a bright Monday in September, in the large preschool classroom in Madrid, Iowa, 15 children sit cross-legged, patiently waiting their turn to report whether they watched football or read books over the weekend. A wiry 4-year-old named Izzy Green dashes across the room, her long black hair trailing behind her, and runs between two of the seated children. She bursts into the center of the circle, plops herself onto the floor and curls into a ball, moaning and clutching a little blanket. Small heads turn as Izzy rolls across the carpet and leaps to her feet. She retreats across the room, scoops up a book and hurls it past a teacher. A teacher’s assistant escorts Izzy back to the group and tries to coax her into a yellow plastic chair at the edge of the circle. But the girl shrieks and flails her arms at the assistant, and tumbles back down to the floor. As she kicks her legs, her hands connect with a basket of toys. Plastic dinosaurs fly across the room. All eyes are on Izzy.
Until a few months ago, Izzy was the only one in her preschool with an individualized education plan. Izzy was diagnosed with autism at age 3. Until this past July, she spent her weekdays at a home daycare and a small preschool where she was surrounded by familiar faces — people who knew her quirks. But that preschool closed down. Enrolling at LilyPad has been “a rude awakening,” says Izzy’s mother, Victoria Green, whose straight brown hair and athletic build mirror her no-nonsense personality. Trouble started the first day. The teachers “wanted Izzy to draw on a small piece of paper, but Izzy wanted to draw on the large paper on the easel,” Victoria says. “So a teacher stood in front of the easel to block it, and Izzy hit the teacher.” The teachers told Victoria that Izzy was “aggressive.” Victoria retorted that the teachers should pick their battles. After that, the relationship was “tense,” she says. Izzy’s teachers have looked for some trick to prevent the girl from melting down, running away and throwing toys — and, during recess, even rocks. So far, they’ve come up with two ideas: the yellow plastic chair and a repertoire of staccato commands that usher Izzy through the day. “Izzy, come” or “Izzy, sit down.” Everyone at LilyPad, even the youngest students, know the chair is Izzy’s home base — a place she retreats to throughout her morning. Izzy too seems to recognize the chair as her own, although it doesn’t stave off her tantrums.
Izzy’s tantrums sometimes spark tension among the other students. Her parents face their own struggles at home. Izzy tends to bolt, as she did once when her father, Shane Green, stepped outside their home for a minute to take out the trash. Date nights are out of the question, because the couple has trouble trusting a babysitter to prevent Izzy from running away or getting hurt. In a larger town, they might have been able to find a counselor trained in applied behavioral analysis (ABA), the intensive therapy that is usually recommended for children with severe behavior problems. But their community of 2,500 people has no qualified ABA providers — either state-funded or private — and they live hours away from the nearest one. Many families in other parts of rural America face similar struggles, says Alacia Stainbrook, a behavior analyst and coordinator of an early intervention program at Vanderbilt University Medical Center in Nashville, Tennessee. “The farther you are from a major metropolitan city, the less likely you are to find a behavioral analyst,” she says. “It’s not feasible to drive two hours for a 30-minute therapy session and then back home again.”
In Iowa, more than 80 percent of the ABA providers operate in cities and suburbs — but about half of the state’s population, including Izzy and many of the 8,000 other children with autism, reside in rural areas like Madrid. Like many rural families with children who have special needs, Victoria and Shane have mixed feelings about raising Izzy here. Central Iowa is breathtakingly beautiful and miles away from the crime and bustle of urban life. It’s liberating, says Victoria. But it’s also confining. Families here have far fewer choices — for schools, therapists, pediatricians and playmates — than they would in a city.
Two years ago, when Victoria heard about a clinical trial that would train parents to use an ABA-like intervention at home, she immediately signed up. The trial, which uses video conferencing to virtually transport researchers into the family home, has offered a partial solution to the problem of isolation.
For Izzy, the approach has been a success. Her tantrums have dwindled from 20 minutes each to less than 5, for example, and she has learned to use words to communicate her wants and needs to her parents. But it hasn’t changed her life at school, and Izzy and her teachers continue to struggle.