when will we offer hope to all autistic children?

from the NY Times

April 13, 2003
Nudging Toward Normal
By JANE GROSS

It is lunchtime at the Alpine Learning Group here, and four preschool children assemble at a small round table and unwrap their sandwiches and juice boxes. The teacher prompts a sweet-faced 4-year-old named Ben to initiate a conversation with his classmate, Emily.

”Ask Emily ‘Do you need a napkin?”’ suggests the teacher, Deirdre Moon. Ben dutifully repeats the question.

”Say ‘Here, Emily,”’ Ms. Moon continues, showing Ben how to pass the napkin to the little girl. He imitates the gesture.

Now Ms. Moon turns to Emily. ”Say ‘Thank you, Ben.”’ Emily thanks him.

Again, it is Ben’s turn. ”Say ‘You’re welcome,”’ the teacher tells him. Ben is muttering to himself, staring into the middle distance. ”Ben, look at me,” Ms. Moon says. His eyes flicker toward her face. She repeats her instruction. This time Ben complies.

This lunchtime chitchat would be effortless for most children. But for Ben and Emily it is an achievement, since both are autistic.

Autism is the mysterious neurological disorder that strands children in a private world, oblivious to others, without the curiosity and instinct to imitate, which makes learning possible. Many have no meaningful language, are prone to
tantrums that disrupt schooling and cling to ritualistic behavior like hand-flapping or twirling that take the place of play. Thus a simple social interaction between Ben and Emily deserves extravagant praise.

”Good job, you guys,” Ms. Moon says buoyantly. ”Awesome.”

The number of children like Ben and Emily seems to be rising steeply, as documented in a new study in California that found an increase of 273 percent in the number of children with profound autism from 1987 to 1998, a number that continues to increase. Some experts attribute this in part to improved diagnosis. Once children like these were considered lost causes, destined for an institution. But along with a growing caseload is new confidence in one form
of treatment, applied behavior analysis.

A.B.A. is the only intervention that has proved successful in controlled experiments, although small and unreplicated. The method has its roots in the research of B.F. Skinner, who developed a system of modifying behavior with rewards and punishments. His early techniques have been refined through the decades and found to be helpful with autistic children. Then came news that recovery was possible for some children: a 1987 study by O. Ivar Lovaas at the University of California at Los Angeles followed 19 autistic children under age 4 through a regime of 40 hours a week of one-on-one behavioral therapy. Nine of 19 children, generally those with higher I.Q.’s, achieved normal cognitive functioning. Followed into adolescence, these children were found, as well, to be socially indistinguishable from peers, shy in some cases but not outside the normal range.

This early, intensive behavioral intervention is now recommended by an array of experts, including the National Academy of Sciences, which issued a report in 2001 urging at least 25 hours a week. But fewer than 10 percent of autistic children receive it, the academy says, because of long waiting lists at special schools, shortages of trained therapists and difficulty persuading districts to pay for this particular treatment when more generic special education, while less effective, would be much cheaper.

Many parents, Ben’s among them, initially react with horror at seemingly robotic techniques. How can a 2- or 3-year-old - the typical age at diagnosis — sit still for hours and hours, bombarded with commands and rewarded for compliance with bits of food, special toys or squeals of praise?

Ben’s mother recalls her initiation to the treatment. Ben was 2 at the time, newly diagnosed. He had no speech and spent most of his time at the window ledge pushing a toy train back and forth, stroking his own cheek and ignoring his parents and twin brother, Oliver. Heeding the advice of a network of parents with autistic children — and unwilling to experiment with unproven treatments like milk- and wheat-free diets, swimming with dolphins or mercury cleansing — the family reluctantly agreed to try an A.B.A. home program, supervised by Alpine’s outreach staff.

The first goal was to get Ben to sit in a chair, make eye contact and follow simple instructions, all prerequisites for language and learning. ”Without basic attending behaviors, a child will just run around the room and flap,” says Ben’s father, Adam. (Adam and Yvonne, both tax lawyers, asked that their surname and hometown not be published.)

Reinforcing Ben’s efforts with M&M’s, a chance to turn the pages of ”Cat in the Hat” and constant praise for ”Good sitting!” and ”Good looking!” the little boy gradually accepted the chair and the eye contact, the tools of engagement. But for the first two weeks, or so it seemed to Ben’s distraught mother, Yvonne, the house in northern New Jersey rang with anguished howling.

”Many times I thought to myself, ‘You’re out of here,”’ Yvonne recalls about the therapists. ”It was heartbreaking to hear him so upset. He’s a little boy. I wanted him playing in the park. Then I remembered he didn’t know how to play in the park.”

Ben’s progress was swift. He mastered simple things like pointing when he wanted something or playing peekaboo. Slowly and methodically, the therapist’s physical and verbal prompting was ”faded,” in the jargon of behavior analysis, and reinforcements for success made less tangible and immediate. The skills were generalized to natural situations, like a family celebration or a trip to the store. Tantrums were discouraged by ignoring them or redirecting Ben’s attention elsewhere.

These outbursts usually have a reason, therapists say, like avoiding a task. Ben was taught to seek relief in a less stigmatizing way, like asking for a break. Anytime he was tantrum-free for five minutes, calculated on a kitchen timer, there were special rewards.

By summer, just before his third birthday, Ben was speaking, the most promising of signs. ”Some children respond more readily and rapidly,” says Bridget Taylor, co-founder of the Alpine Learning Group and a leading researcher in the field. ”We just don’t know in advance who those kids are.” (I.Q. may be an indicator of success, although the test is less reliable in children without speech.)

The four variables, Dr. Taylor says, are the age when treatment begins, the quantity of therapy, the quality of therapy and the neurological potential of the child — whether, for instance, autism is coupled with mental retardation. ”We have control over the first three,” Dr. Taylor says. ”No. 4 becomes apparent over time,” generally between age 5 and 8.

Until last fall, Ben continued his therapy at home — up to 30 hours a week, one on one. His parents were similarly trained, so they could consistently reinforce what Ben was learning. ”You have to keep on top of it every waking minute,” Yvonne says. ”And when you’re tired, the temptation is to say, ‘Just this one time.”’

BEN’S family has been luckier than most in finding and paying for this kind of care, which became wildly popular after the 1993 publication of ”Let Me Hear Your Voice,” an account by a mother of her two children’s recovery from autism, with Dr. Taylor, then a graduate student, as their teacher. With interest at a new high, skilled A.B.A. teachers, who charge $40 to $100 an hour, were scarce. The family’s goal was 30 hours of treatment a week but they could rarely find qualified therapists for that many hours.

At first, Ben’s family paid thousands of dollars out-of-pocket for his teachers. The state of New Jersey expects school districts to pay for a disabled child’s education after age 3 but itself supports only two hours of treatment a week before then. Months of exhausting back and forth with their insurance company eventually produced some reimbursement.

The next hurdle was finding a preschool spot and getting the state to agree to pay for it. Again, Adam and Yvonne were blessed.

Already familiar to Alpine directors from the outreach program, they were offered a coveted slot when another preschooler made the transition to a mainstream kindergarten. And their home school district approved the placement without protest, agreeing to pay the $60,307 for a 12-month school year, including case management, home visits, the training of family and staff and gradual mainstreaming for children ready for it. Some districts might have insisted that a public special education classroom was sufficient, leading to costly litigation if a family had the conviction, stamina and money for the fight.

Like many such schools, the Alpine Learning Group was founded by parents; the first classes were held in 1988, with four children in a church basement. It now ranks among the most respected programs, along with the Princeton Child Development Institute and the Douglass Developmental Disabilities Center at Rutgers University. Its outreach program serves 14 children up to age 5. The school itself has 27 students, ages 3 to 21. Some of the younger children, like Ben, are candidates for mainstreaming, although others never master the necessary language, social and behavioral skills to get by in a regular classroom. The older students at Alpine are more impaired, being readied for jobs and some degree of self-sufficiency in group homes. Obviously, that is not what their parents hoped at the beginning. But untreated they might have been institutionalized, which over a lifetime is far more expensive than even this costly form of education.

Last fall, Ben began at Alpine, working one on one from 9 a.m. to 2:45 p.m. with either Ms. Moon or another teacher, Danielle Spinnato. Formal lessons are interspersed with so-called incidental learning, like the scene at lunch. Four times a week, after school, Ben has two hours of therapy at home. Often Oliver is included and he helps guide Ben through make-believe birthday parties and board games.

Applied behavioral analysis is a way of life, lived 24/7. Immersion is essential because learning to clap, wave or point can require hundreds of repetitions for an autistic child. Hand-washing and similar self-help skills are taught one step at a time: Pull up sleeves, turn on water, wet hands, get soap, rub hands together, rinse off soap, get paper towel, dry hands, throw towel away. Tantrums and other idiosyncratic behavior must be all but eradicated if a child is to attend a regular school, go to church or take a family vacation.

This winter, Ben has worked on more than 40 academic, social and self-help programs, each with a defined objective, step-by-step teaching method and measurable goal. His programs, filed in a fat black binder, include ”requests preferred items from a peer,” ”puts on a shirt,” ”follows instructions from a distance,” ”answers questions about the calendar,” ”cuts using scissors” and ”tolerates the presence of dogs.”

The give-and-take of natural conversation can be a struggle. When Ben drops a piece of paper on the way to the recycling bin, Ms. Moon prompts him to say ”oops.” At lunch, she takes his straw away so he will have to ask for it. In the gym, she asks, ”Who wants to go on the trampoline?” Ben says nothing but climbs aboard. She insists he come down and say ”me” before taking his turn.

Still, by January, Ben had met Alpine’s criteria to spend a few hours a week in a normal preschool: he responds to his name, follows simple one-step instructions like ”Hang up your coat,” takes turns with other children and rarely throws tantrums. Ms. Spinnato accompanies him to the Friends Neighborhood Nursery School in nearby Ridgewood. She reminds him to look at the teacher or stop touching his face, but less conspicuously than in his Alpine classroom —a silent thumbs up, for example, instead of an audible ”Awesome!” as she nudges him toward normal.

Ben easily learns a song about bluebirds. But he does not join the others making bird feeders with crumpled bread, peanuts, raisins and seed. He cleans up nicely when it is time to go and says ”Bye” to his friends. A little girl named Molly asks Ben to make her a Valentine card. The next week he does.

Adjustments — improvisations, really — are necessary as Ben’s life unfolds. In preparation for Friends, Dr. Taylor asked Yvonne to replace his sweatpants with jeans, like his new classmates wore. Some autistic children find certain clothes uncomfortable or make a ritual of wearing the same thing. Everyone at Alpine told Ben how cool he looked. The praise made the scratchy denims bearable.

Ben poses different challenges at home, where it is difficult to maintain the rigorous consistency of school. One afternoon, cranky from the flu, he refuses cough medicine, wrests himself from the nanny’s hold and begins singing ”Old McDonald Had a Farm” at the top of his lungs. Yvonne tries to calm him without success. Both have trouble prodding Ben from a favorite hiding place behind the couch.

During frequent home visits Dr. Taylor guides their way. She does not want Ben behind the couch since it encourages his natural isolation. Nor does she want him confused by two adults telling him what to do at the same time. Yvonne should take the lead, Dr. Taylor advises.

It is always two steps forward and one step back. For several days running, Yvonne says, Ben will be a model 4-year-old, taking his cereal bowl to the sink without being asked and greeting company. Then, for no apparent reason, she wakes to find her son ”the poster child for autism,” moving from one peculiar behavior to the next so the family can’t go anywhere without strangers staring.

But good days outnumber the bad by a widening margin. One recent evening, Adam was on his knees by the side of the model railroad tracks. He is an affectionate father, shaping Ben’s behavior with the sort of praise that would not have registered on the child’s radar screen awhile back.

”How many cars are there?” Adam asks Ben. The who-what-why-where-when-and-how questions were part of the boy’s curriculum that week. ”Four,” Ben answers smartly.

Adam disagrees, touching the little cars — one-two-three-four, all the way to six. Yvonne turns her attention to the counting. Her husband insists there are six cars. Ben holds firm on four. Yvonne sees immediately that the front two were engines, thus Ben is right.

Adam is thrilled by the subtlety of Ben’s reasoning and explodes with high fives. Then he bombards his son with addition problems. 6 + 6? 12; 3 + 7? 10; 7 + 6? Both are confident now, grinning. And Ben looks squarely into his father’s eyes.