The tough task of teaching autistic children.

[Guest guest]

Excerpts from the Magazine "Mothering" http://www.mothering.com/articles/growing_child/child_health/autism-summit.html [Also : Autism Task Analysis at: http://www.mothering.com/articles/growing_child/child_health/autism-task-analysis.html and: What is Applied Behavioural Analysis at: http://www.mothering.com/articles/growing_child/child_health/behavioral-analysis.html] "Excuse me for a moment, I have to get Max's reinforcers," said Liz Seefeldt. Through my mind drifted exotic images of what a "reinforcer" might be, none of them too

pleasant. When Liz returned, she held in her hands a bowl of grapes. "He loves them," she said. The use of such reinforcers is an integral part of ABA, especially in the beginning stages. Although children eventually learn to accept heartfelt praise and encouragement for their achievements, many autistic children at first don't respond to praise at all; the rewards need to be much more concrete. For many, that means food, such as Max's grapes, or M & Ms. For others, it might mean time spent with a favorite toy. "Everybody needs reinforcement," I was told by Steve Anderson. "In a job or a relationship, we get inspired to continue in various ways, and it's no different for these kids." "Max, put ball in box," said the therapist. In the beginning, speech is kept short and clear. Max picked up the ball and held it in his hand, looking curiously at it. Becky made a notation on her pad. She took the ball gently from him. "Max, put ball in box," she repeated. This time, Max put the ball in the box. For his success he received some grapes and the comment, "Good putting ball in the box, Max!" They moved on to the next task. Max seemed like any typical four-year-old boy: cute as could be with brown, curly hair, energetic, a bit distractible. But Max's very ordinariness, like Kevin Doody's, is miraculous—only a year ago, he could not utter the simplest word. His parents said that Max had seemed to develop normally until the age of 12 months, just as his older sister had, and had even begun to speak a few words. At 14 months, however, he would not respond to his own name 95 percent of the time. Whereas he used to run to his father, enthusiastically greeting him on his return home from work, he now walked right past him, not seeming

to register his father's presence at all. It is this lack of acknowledgment that is most painful for parents, Steve Anderson tells me. "As human beings, we are hardwired to socialize and don't know what to do when we simply are not able to get a response from someone." For parents, and perhaps particularly for mothers, it is devastating to feel that our instincts cannot guide us. "It changes the way one mothers," said Anderson. "You never know what your child wants, and nothing seems to work." This is why supporting parents is such a key part of the treatment of autism at Summit. The school's policy of treating parents as team members and providing plenty of helpful services, such as support groups and respite services—for example, providing parents with a qualified caretaker while they go out for dinner—helps make it possible to for parents to carry on and not give up hope. It is also why any first exposure to

ABA treatment can be challenging; at first, it can seem harsh. Autistic children do not want to interact with anyone, least of all an unknown therapist. It is often necessary to keep them in their chairs, or even in the room, against their will. Tasks are relentlessly repeated, over and over again, until they are mastered. Forcing a child to work for hour upon hour can seem cruel. Watching the process of ABA, especially in the beginning, can bring animal training to mind. One wonders, Is the child really learning anything, or is it just mimicry? In the beginning, it is just mimicry, until that magical moment when the behavior is internalized and becomes part of the child's innate understanding of how the world works. It is intense, acknowledges Anderson. "But this is a significant disorder, and maybe something a bit invasive is what's needed." "My daughter cried for four hours of therapy every day for a

month before the window opened," said Ellen Spangenthal, who is Summit's director of communications. Laura, who is now 12, had home-based ABA therapy and attended Summit until kindergarten, when she was able to move on to a typical school setting. "Laura bit her therapist and hit her. There are not a lot of therapists who can do ABA. They just have the ability to look beyond the behavior, which seems hopeless at first." This is another area where Summit tries to provide higher levels of support than many other schools do. Parents are provided with a mentor before beginning ABA—usually a special-education teacher, who prepares them for what is to come. Later, in the office, Spangenthal showed me a sample of an ABA task analysis, in this case about washing hands. Each task is taught by breaking it down into steps—in the case of the task of washing hands, as few as 14 steps or as many as 22 (see sidebar, "A Sample

Task Analysis in Applied Behavioral Analysis"). Each component of the process of washing one's hands is taught in the way I observed in the Seefeldt home. The goal of all ABA therapy is to have the child learn to "generalize" such processes—to begin to extend what the child has learned to other tasks encountered in daily life. The ABA process can be likened to cutting a new path in a densely overgrown forest. At first it is a slow struggle through a seemingly endless tangle, but over time the path becomes well traveled and easy to walk on. ABA seems to open up new neural pathways in the brain, which then becomes more adept at trying other new tasks. Max Seefeldt is well past the beginning stages. Now four years old, he has had 15 to 20 hours of ABA a week since just before his third birthday. This year, in addition to the home-based therapy, he attends one of Summit's integrated preschool classes each weekday afternoon. Summit offers both

"integrated" preschool classes, which are mixtures of typical and special-needs children, and "contained" classes, which are devoted entirely to special-needs kids. Next year, Max will attend a "transition" class, designed to ready him for a full day of school. His parents hope this will prepare him for kindergarten in a typical classroom, just as it prepared Laura Spangenthal. Going into a typical kindergarten is not always smooth sailing, however. It was Kevin Doody's experience in attempting to do so that helped inspire the creation of another Summit program housed in the Maple East Elementary School in nearby Williamsville, New York. Kathy Doody and other parents were instrumental in creating a partnership between this public elementary school and Summit. Each of the eight children enrolled spends as much time of each school day as he or she can manage in the typical classroom for his or her grade. Kevin, for example, spends about half of

each day with a typical second-grade class. The activities he takes part in are carefully chosen to enhance his self-confidence. He spells and reads with his typical class because these are areas in which he shines. It is important that his experiences with the typical class are, for the most part, positive ones geared to help him gain peer acceptance. Like many autism-spectrum children, Kevin is sometimes a study in contradictions, and this can hinder him in that key area of "fitting in." While other kids his age may talk incessantly about the Disney Channel, Kevin loves The NewsHour with Jim Lehrer and wants to discuss it in great detail, a fascination that most of his classmates simply can't relate to. Fortunately, he is similarly attracted to the Buffalo Sabres hockey team; his parents try to nurture this more age-appropriate interest. Max Seefeldt is similarly fascinated with the alphabet. Before his third birthday, Max could

line alphabet blocks out on the floor in reverse, from Z to A, with complete accuracy in a matter of seconds. To learn to read so young is great—until it becomes an obsession. Max's mother hides his alphabet books much of the time so that he doesn't use them to "stim." Stimming (short for stimulation) refers to the process of obsessing with a particular object to the absolute exclusion of everything else. Twelve-year-old Laura Spangenthal tends to stim with dogs. "She has a love/hate thing about dogs," said her mother. "She wants to read about dogs and see movies about dogs, but if she sees one unexpectedly on the street, she can lose it completely." While transitioning to a mainstream classroom is an important goal, it is not appropriate or even desirable for all autistic children. Summit has been a part of 19-year-old Mik Reiford's life since he was five. Now a handsome, redheaded young man,

Mik is still unable to speak. When his parents first had him evaluated, at 18 months, the world of special education and diagnosis was very different. Maggie Reiford, Mik's mother, was told that he was severely mentally retarded, so impaired that he would never be able to jump or perform many other basic physical skills. "I just knew that wasn't right," she said. The Reifords discovered Summit when Mik was kindergarten age, and finally got an accurate diagnosis of Mik and the support they so desperately needed. "The teachers write to me every day," said Maggie. "When he was learning to tie his shoes, they sent home a page and a half. You can call anytime and they are right there." In fact, Summit has an absolute open-door policy for all parents. Asking questions and advocating for your child are encouraged, and teachers and therapists openly admire parents who get involved. Mik attended Summit's school-age

program until he was 15. He is no longer treated as if he were retarded—he can jump and swim and, although he cannot speak, he can communicate with the aid of a device, called an e-talk, that allows him to punch in the words he would like to say. (When I visited, Mik's e-talk was undergoing repair, and for a few days he had gone back to using pictograms to express his needs.) He carries his e-talk in a sort of shoulder bag—made for him by one of his teachers—that keeps his hands free for other tasks. I met Mik and Maggie Reiford at Summit's Audubon facility, a combination vocational-academic program for children aged 15 to 21. It is purposely set in a business park, in the Buffalo suburb of Amherst, to help kids learn to acclimate to a working environment. (For this reason, Audubon will not be moving into Summit's new building.) The Audubon program seems to cover all the angles, from the practical to the physical. The large central room is

divided into workstations at which children learn to sort mail, use computers, shred paper, and prep film canisters for development, to name a few examples. Off to the side is a kitchen, where children are given one-on-one instruction in basic food preparation. Another classroom mimics a bedroom with a bed and dresser, where kids can learn how to make their beds and do their own laundry. There is also a classroom for academics, and a fitness area where all children are taught to care for themselves by keeping in shape. Mik brings home the skills he learns here, his mother told me—his room is neat as a pin. When I arrived, he was attending a class in handling emergencies, including how to dial 911. Another key element of Audubon is its work program. Summit has created partnerships with a number of businesses, such as the Muscular Dystrophy Association, where Mik has worked putting together fund-raising packages. A child will go to work at one

of these businesses, accompanied by a job coach, and experience a real working environment. The coach works with the child one-on-one, stepping back as the child gains proficiency. This continues until the child can work productively enough to be paid. As a result of this program, many of these kids will be able to hold a job when they leave Summit. All benefit from the experience in some way, whether it is practice in social contact, increasing manual dexterity, or, most important, developing a sense of pride in their accomplishments. This emphasis on practicality and daily living skills does not, however, make Audubon any less a true high school. In late spring, Mik and his classmates attended a prom. This year's theme: "The Stars Are Out Tonight." "I don't know if I can stress enough the time and energy that goes into the prom," said Audubon's educational coordinator, Kathy Moyer. "And it's all volunteer work

for our staff. One nurse even rented a giant Oscar figure for the night." The teachers decorated the room and prepared a dinner. The kids arrived at the dance in limousines. Every effort is made to give these kids the kinds of rites of passage that typical children take for granted. My last stop before leaving Summit was a tour of the new building, then nearly finished. Its shining modern interior is a far cry from the shabby walls of the borrowed public school facilities now in use, and an even further cry from Nancy Harris's kitchen, where the whole thing began. Every staff member I spoke to expressed excitement that they would all be together under one roof, and that carefully designed classrooms in soft shades of lavender would soon take away the need to "make do." As I visited Summit's different locations and met with the school's teachers, administrators, parents, and the children themselves, I tried to

figure out just what it is that makes this institution unique and so successful. It certainly wasn't the flashy facilities. Unique programming has something to do with it, I guessed. Where else can you attend a class on disciplining your autistic child on a Saturday afternoon while that same child takes a course in how to shower? It was also clear that the therapeutic benefits of Applied Behavior Analysis have been a major part of the strides made by Summit. And, without a doubt, the school's emphasis on the crucial tool of supporting the family as well is too often neglected by other programs. In the end, I concluded that the success of Summit Educational Resources' umbrella of recovery from the effects of autism is that all of these elements are pulled together by the intense energy I saw in the eyes of almost every adult I met there, from each parent to executive director Stephen Anderson. I remembered how many parents of former

Summit students, inspired by their own children's progress, are now employed by Summit as therapists and administrators. Kathy Doody, for example, went back to school to become an ABA therapist and help other kids at Summit the way her son, Kevin, had been helped. Ellen Spangenthal now works for Summit and helps to spread the word about the school's remarkable success. The synergy generated by all that collective energy working together in a single institution is a force to be reckoned with in the fight against autism. To find out more about Summit Educational Resources, visit their website at www.summited.org or call 716.629.3400.Wendy Ponte is a freelance writer who lives in Brooklyn, New York, with her daughter, Adelaide (10). "Our ideal is not the spirituality that withdraws

from life but the conquest of life by the power of the spirit." - Aurobindo.

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