- The Beautiful story of one of our supporters Bob, written out by Macy Graham (Thanks Macy!)
One summer, Bob Lehr pushed a videocassette of “Rain Man” into his VCR. It was a movie he had put off seeing, despite Dustin Hoffman’s Oscar-winning performance as an autistic man. Sitting in the room with Lehr was his 16-year-old son, Ben, who at a young age had been classified as autistic. Currently, the Lehrs were told, he had an I.Q. of about 37 and the reasoning ability of a preschooler.
Although Ben attended high school in Syracuse, he wasn’t taking academic classes, and there was no evidence that he could read or understand arithmetic. His vocabulary was limited, and some of the things he said made no sense at all — they seemed to be random phrases picked up from television and school.
Over the years Ben had gouged himself with knives, ripped electrical sockets out of walls, taken a hatchet to the fiberglass bathtub and used his head to smash most of the windows in the house. In calmer moods, Ben liked to stare at objects, like tape-recorder reels, or stand at the kitchen sink, running the water through his fingers for hours
When Raymond Babbitt, the Hoffman character, appeared on the screen, Ben rocked back and forth, moaned and hit the side of his neck, until his father grabbed a nearby laptop computer and asked, “Is there something you want to say?” With his hand resting on Bob’s for support, Ben typed out, “That man is autistic.”
Ben was using “facilitated communication,” a writing technique introduced to the United States from Australia in late 1989 by Douglas Biklen, director of the division of special education and rehabilitation at Syracuse University. As the name suggests, it is not a cure for autism but an aid to communication: a parent or teacher supports the arm of an autistic person as he or she types out messages on a keyboard, using the hunt-and-peck method. In the Syracuse area, 45 autistic children and adults using facilitated communication are expressing their feelings and helping explain some of the enigmatic behaviors associated with autism.
Autism is characterized by, among other things, an inability to feel love or form social attachments, a lack of self-awareness, mental retardation, difficulty understanding speech and an inability to grasp abstract concepts or symbols. Biklen’s researchers, however, are finding that some people who have been labeled unteachable can read, write, calculate and do schoolwork appropriate for their age.
Preschoolers use facilitation to tattle on classmates, and teen-age boys try to find out if girls are interested in them. At their keyboards, students write poetry, tell lies and even crack jokes. When Ben Lehr was asked, as part of his biology homework, to name two causes of high blood pressure, he answered, “Cholesterol and tests.”
At home, Ben has been using the keyboard to try to help his family understand his behavior. He attempts to describe the difference between being the gentle, likable young man so fondly regarded by his teachers and many friends, and being capable of such anger that it frightens him. It’s not “Ben” who causes such damage and pain, he has spelled out, but “host,” a term his sister Penny guesses came from his biology classes. Explaining host seems excruciating for Ben; in one two-hour session he ekes out the typing while screaming, banging his head on the floor, biting himself and hitting his mother, Sue, and his sister Sherry.
Facilitation has given Ben and others a voice, not a cure. It is therefore profoundly encouraging and profoundly frustrating. “What the students are telling us is that they don’t want to have autism, and that they want to be able to talk,” Biklen says. “And these are things that are probably not going to change.”
BIKLEN’S WORK IN SYRACUSE HAS ALREADY challenged the traditional understanding of autism. If it can be applied to a broader group of autistic people, facilitated communication could upset a half-century of thought about this baffling cluster of disabilities.
Before 1943, when Leo Kanner, a child psychiatrist at Johns Hopkins University, published the first systematic description of the disorder in a medical journal called Nervous Child, autism was generally regarded as “childhood schizophrenia” or “childhood psychosis.” Kanner’s term, “infantile autism,” pointed to the child’s apparent preference to dwell in a self-generated world rather than form relationships with other people. And for decades, such withdrawal was blamed on insufficiently nurturing parents, popularly called “refrigerator mothers.”
Then in his 1964 book “Infantile Autism,” Bernard Rimland, founder of the Autism Society of America and director of the Autism Research Institute, argued that the causes of autism were neurological, not psychological. He cited, among other things, studies in which sets of identical twins were found to be autistic — while other siblings are almost never autistic, despite being raised in the same home. Other leaders in the field, notably Bruno Bettelheim, continued to treat autism primarily as a mental illness.
Even today the precise physical cause of autism remains elusive. Two hypotheses currently lead the pack: it may be a result of excess levels of serotonin, a neurotransmitter, or underdevelopment of the brain. In the meantime, relatives of the autistic find themselves bombarded with new causation theories, behavior modification techniques, medications and teaching methods. Some of these have improved the lives of some people, but many have merely disappointed.
Biklen initially regarded facilitated communication with skepticism. A specialist in mental retardation, he has worked for many years to integrate developmentally disabled children into mainstream classrooms, and in 1972 he helped start the nationally renowned program at Edward Smith Elementary School in Syracuse, at which developmentally disabled children attend classes with “normal” students.
He first read about facilitation in a 1980 book, “Annie’s Coming Out,” written by Rosemary Crossley and Anne McDonald. McDonald was born with cerebral palsy and lived from the age of 3 in St. Nicholas Hospital in Melbourne, Australia, a state-run institution, now defunct, for severely retarded people.
When Crossley, who had an undergraduate degree in humanities, became a “play leader” at the hospital in 1975, McDonald was 14 and her mental age was measured in months. Two years later, Crossley had taught her to read, and McDonald revealed a sophisticated ability to write and do math, although she required Crossley’s support on her arm to fight her powerful muscle spasms and point accurately to her answers.
In 1979, McDonald successfully sued for the right to leave St. Nicholas Hospital and has lived with Crossley ever since. McDonald went on to college and published journal articles about rights of the disabled.
Her case generated a white-hot controversy, with Australian psychologists and speech therapists accusing Crossley of putting words in McDonald’s hands, as it were. But the Supreme Court of the state of Victoria decided otherwise, ruling that McDonald could control her own life and finances. Five years ago, the Government recognized Crossley’s work with nonverbal people by honoring her as a Member of the Order of Australia
While giving a series of talks in 1985 on integrating the disabled into conventional schools, Biklen had dinner at Crossley’s house in Melbourne and observed facilitation in action. He had never doubted that such a technique could work for some people with cerebral palsy, many of whom have normal or above-average I.Q.’s. But a year later when he got a letter saying that Crossley was using the same technique with an autistic child, he replied perfunctorily. “They were nice people, and I didn’t want to have to say, ‘You’re crazy,’ ” he recalls. “From what I knew about autism, and I knew quite a bit, it just didn’t make sense to me.”
Curious nonetheless, he revisited Australia twice, briefly in November 1988, and for six weeks in mid-1989. There he observed Crossley’s work at the DEAL (Dignity, Education and Language) Communication Center. Supported by the Government, the center has helped more than 800 people with non-speech communication.
Some Australian professionals warned Biklen away from the center, calling it a hoax. But the clients Biklen saw communicating through facilitation — including people labeled autistic — erased his doubts. Among them was the autistic boy Crossley had written to Biklen about in 1986, who, she says, had been used in Australia as a benchmark of the “unteachable, unreachable autistic child with no potential.” In Biklen’s presence, with a staff member’s hand resting on his shoulder, the boy typed: “I like Dougg butt hhe is maad . . . He talks to me like I’m human.”
On returning to the United States, Biklen described what he had seen in an article titled “Communication Unbound: Autism and Praxis,” which appeared in the August 1990 issue of the Harvard Educational Review. For Biklen, facilitated communication had become something more than an intriguing line of research. “It was important for me not only that I could in some way prove what I had seen,” he says. “But I also felt an absolute moral obligation to get it in place in the United States.”
– More can be learned through our Workshops