Lisa Krieger threw herself into planning her eight-year-old daughter Gina's first communion with the thoroughness of a presidential advance team. Gina is autistic.
Months before the ceremony, Mrs. Krieger recruited neighborhood children to rehearse the processional down the church aisle with Gina, videotaping it so Gina could watch herself and practice at home. She asked the nuns to keep Gina in the same spot in line; even the smallest change in position could trigger screaming or a sudden bolt away.
She made sure the communion dress didn't itch and had Gina wear it for a few minutes each day, building tolerance so she wouldn't strip it off during the service. She found a supplier of communion wafers so Gina could get used to the taste and wouldn't spit out the consecrated host when kneeling before the priest. On the day itself—May, in Washington Township, New Jersey—she positioned herself among the congregation, ready with instructions should Gina become confused. "She behaved perfectly," Mrs. Krieger said afterward, "but I had to think through every possible thing that could go wrong, know exactly where we were, and what was about to happen."
Her planning made possible what most parents take for granted: a child's participation in ordinary family activities and social events—a meal at a restaurant, a movie, a celebration.
None of these things come naturally to children with autism. A decade ago, the idea of a normal family life with a child like Gina would have seemed unthinkable. But now, more and more families with autistic children are discovering that the techniques they've seen work in special education classrooms—behavioral methods first developed by psychologist B.F. Skinner, visual instructions, environmental adjustments—can be adapted at home. The goal goes beyond maximizing the child's learning. It's about improving life for the entire family.
When an autistic child's skills and behavior improve, experts say, parents and siblings gain more free time. The weight of stigma and social isolation lifts.
"It doesn't matter if a kid can read and write and do algebra if he can't go out with his family for dinner," says Bridget Taylor, co-founder of an autism school in New Jersey that became a model for EPIC, the school Gina attends. "I think half the battle with autism is making these kids active, functioning members of their families—and making the families themselves active and functioning."
It is relentless, intense work—a heartbreaking task carried out, overwhelmingly, by mothers. It tests marriages, strains siblings' resilience, and demands patience beyond measure, according to educators and medical professionals. For Lisa, this has meant accepting that her husband's patience with Gina has limits hers do not; staying alert to the needs of her six-year-old daughter Nicole so she isn't neglected; and maintaining her job as director of Shared Finance for the Greater New York Hospital Association, working from home.
Over the past decade, the number of autistic children receiving state-funded special education services has grown from 20,000 to 140,000, according to the U.S. Department of Education. Scientists still debate the cause of this sharp rise in autism diagnoses—whether it reflects a real increase in incidence, more accurate diagnosis, or simply the decision to keep autistic children at home rather than institutionalize them. But there is no question: more families are living as Gina's family does, raising autistic children at home and working to fit them into normal routines and activities. Yet support from educators aside, organized resources for these families are scarce. Mothers mostly trade hand-to-hand collections of information sheets and flyers.
Parents have only so much strength, time, and money. Ilene Lainer had the option to leave her law practice when autism was diagnosed in her second son, Ari, age eight. Now she is a full-time mother to an autistic child—prepared to spend every moment teaching her son, who cannot speak, how to navigate the world.
Take a haircut. The first time, she took Ari to the barber as she had his ten-year-old brother Max. The result was "a screaming, hysterical child" and unhelpful comments from other customers: "Can't you control your son?"
So, with help from Ari's teacher at EPIC, his mother began a step-by-step approach. She trimmed his hair one snip at a time, only as much as he could tolerate. Then she sprayed water on his face daily. Then she let a few cut hairs brush his skin. Finally, he was ready to sit in the barber's chair again.
But every outing beyond their street makes her hold her breath. Once, Ari ripped a television off a wall and nearly threw it near other children. Ilene sent a case of wine to apologize. Then she began a year-long behavioral program to teach Ari to ask for things beyond his reach—pointing, making sounds, or using a computer with picture-based communication.
Sometimes the rewards that prevent a tantrum can trigger one if they vanish. One mother managed a ninety-minute car trip with her autistic son by promising him a swim at a nearby pool and french fries from McDonald's when they arrived. But the pool was closed and the restaurant wasn't serving fries until 11 a.m. The boy, enraged, tried to break through the pool gate. At the fast-food counter, he lunged at the register—no amount of pleading or even a ten-dollar bribe could convince anyone to serve fries early.
The mother, whose husband asked that the family remain unidentified, said her spouse often pushed to attend social events beyond their son's tolerance. "He still can't accept that we have to change our lives," she said.