by John Donvan
A half hour had already passed when Crossley produced a Canon Communicator—a small keyboard device that spooled out a thin paper tape displaying whatever was typed into it—not unlike a label maker. Crossley asked Louis to tell her his name, which he did using the keyboard. At this point, she was touching his arm only intermittently. Then she asked him if he had anything he wanted to say. His finger moved and the paper tape advanced again with each letter he pressed. It read: IM NOT RETARDED. Crossley commented, “No, I don’t think you are.” Louis continued pressing keys; this time the tape read: MY MOTHER THINKS IM STUPID BECAUSE I CANT USE MY VOICE PROPERLY.
Biklen was astounded. During a follow-up visit to Australia, which lasted nearly four weeks, he met with twenty-one people identified as having autism, most of whom had little to no spoken language. Via FC, he “spoke” with them. Some, new to FC, had only a limited vocabulary, producing keyboard communication that was rife with misspellings and grammatical errors. Others, who had been communicating for three or four years, seemed to have mastered the art of conversation. In each instance, a facilitator performed the role Crossley had played with Louis, offering encouragement and maintaining light physical contact with the person pressing the keys. The facilitator might support a forearm, or an elbow, or keep a hand on a shoulder. This contact was meant not to steer the letter selection, but to provide gentle resistance that slowed the process, smoothing out impulsive or involuntary movements. For example, if a person were to get locked into hitting the same key repeatedly, the facilitator would pull his hand back from the keyboard. In some cases, there was no physical contact at all, which Biklen called “independent” typing—though the facilitator always remained inches away.
Biklen found himself engaging with people who were liable to be viewed by others as profoundly uncommunicative and almost certainly intellectually disabled. But with FC, he found himself convinced that the opposite was the case. For example, he met Bette, a young woman who could not go to the toilet by herself, but was verbally sophisticated enough to ask Biklen, via keyboard, “if people like me will ever be normal…able to do more things that other people do.” One boy explained that he had mastered reading “by being around words and by watching television.” Biklen took part in facilitated conversations that wandered into jokes and wordplay and that even probed philosophical matters, such as “the social construction of reality” and the nature of disability itself. “What really does integration have to offer to some terribly retarded people?” a young woman named Polly asked him via FC. This was all the more extraordinary since many of these children and young people had been denied all education and perhaps had never even been read to. Yet they were composing full sentences, with recognizable grammar and better than passable spelling.
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CROSSLEY WAS NOT the first person to claim communication with nonspeaking individuals diagnosed with autism. Various modalities had been tried in the past, with a wide range of results, some better documented than others.
The earliest-known use of attempted communication by keyboard for people with autism dated to 1964, when a pediatrician named Mary Goodwin installed a “talking typewriter” at the Bassett Medical Center in Cooperstown, New York. The device had been developed by Edison Laboratories as an experimental product for teaching beginning reading while making “learning…a successful, enjoyable experience for the student.” Nearly as big as a refrigerator, the talking typewriter combined a keyboard with an early computer that was programmed to play a tape-recorded voice naming each letter as it was typed, while at the same time the letter was projected on the monitor. Goodwin allowed a number of children, all diagnosed with autism, to explore the keyboard, pushing keys at will.
Initially, the printouts showed only random combinations of letters. In time, however, Goodwin reported that some of the children were constructing recognizable words. For example, a boy named Robbie produced this string—downycloroxfinaltouchivoryliquidiobnkkll—which clearly yielded the words “downy,” “clorox,” “final,” “touch,” “ivory,” and “liquid.” It was probably no coincidence that these words, and others Robbie produced, were brand names and product descriptions he had likely seen in ads. Still, for a time, Goodwin’s work caused great excitement, which died away as the verbal output of the children failed to flower beyond this typewritten version of echolalia.
Also in the 1960s, a mother named Rosalind Oppenheim published a piece in the Saturday Evening Post about teaching her severely impaired son to write, spell, and do arithmetic by manipulating his hand to help him grip a pencil. Though she wrote a book describing her method, it did not garner much attention or many adopters.
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IVAR LOVAAS, OF course, had used ABA to instill speech skills in previously nonspeaking children. With some children—more often those who had higher intelligence to begin with—recognizable fluency was achieved. With children of lesser intelligence, more modest gains were made: small working vocabularies, which let children ask for what they wanted verbally. This was not an insignificant achievement, and helped lessen much of the daily frustration that came with not being able to communicate one’s most basic wants and needs. A boy named Reeve, for example, after hours upon hours of ABA-based teaching, learned to form simple sentences that started with “I want…” and to answer the question “What are you doing?” with specific and correct answers, such as “I am drawing.” Unquestionably, this marked a major leap forward in his ability to interact with the world. But it did not, as the researchers had hoped, lay the groundwork for the boy’s own brain to take over the language acquisition process. Reeve never learned a new word simply by hearing it, and he never made any spontaneous attempts to practice his skills. He did not become a person able to pour out his inner thoughts.
In the 1980s, a different and wholly nonverbal approach produced authentic communication on par with Reeve’s. Two Delaware educators, speech pathologist Lori Frost and behavior analyst Andrew Bondy, created small picture symbols depicting objects or actions, each the approximate size of a credit card. These constituted the system’s vocabulary. A child trained in its use, who wanted, say, a cup of juice, would pick up the picture displaying juice and hand it to the person of whom the request was being made. The physical act of touching and delivering the picture bypassed the need for speech and overcame the weakness some children displayed in pointing with their fingers. Simple and effective, the Picture Exchange Communication System (PECS) acquired many users. (Many years later, a comparable visual approach was adapted to create stunningly sophisticated applications for the iPad and other touchscreen computers. Like PECS, these applications enabled communication without speech, and without the necessity of mastering complex English grammar.)
But by the late 1980s, some twenty-five years’ worth of experiments in communication with nonverbal people with autism had not yet yielded anything approximating the rich, complex experience of fully realized language.
Then FC came along.
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DOUG BIKLEN CAME back from Australia convinced. In August 1990, in the Harvard Educational Review, he published an account of what he had seen Rosemary Crossley do. He acknowledged being skeptical at first, noting that FC yielded uneven results, where children produced language with some facilitators but not others. He noted, too, that some children appeared not always to be looking at the keyboard as they typed. This raised the possibility that the facilitators were steering the letter selection. “Perhaps it is such behaviors,” Biklen wrote, “that cause some people to worry that facilitated communication is no more real than a Ouija board.”
But Biklen, in the end, bought in. Conceding that he was not sure why FC worked, he asserted that he had seen “enough to justify the continuing assumption of its validity.” Indeed, he wrote, facilitated communication had “forced” him “to redefine autism.” It was an audacious statement, as he had never been, strictly speaking, an authority on autism. But his enthusiasm was contagious, as teachers and speech l
anguage therapists in the Syracuse schools began to use facilitated communication, consulting with Biklen in after-hours meetings. As word of this spread, the excitement was echoed in news coverage, where FC was almost invariably described as a miracle. The New York Times published a wrenching feature article in 1991 titled “The Words They Can’t Say,” describing the heartbreaking messages kids were typing. “Tell my mother that I’m sorry that I could never learn how to talk,” read one. “I’ll die if I don’t get a friend,” read another. In 1992, Prime Time Live’s Diane Sawyer personally spent a week in Syracuse with Biklen and some of his students. The resulting story won an Emmy Award.
Meanwhile, hundreds of aspiring facilitators signed up for training in the method through a program Biklen established at Syracuse University. In less than a year, eight hundred people had completed the course. Soon workshops were being offered at Temple University, the University of Maine, and the University of Buffalo. FC experience became a selling point for new hires in special-ed departments. One New York State school district placed an ad for a speech therapist in the local newspaper and specified “Knowledge of augmentative and facilitated communication desired.”
Those learning the method felt like they were an integral part of a revolution in special education. Certainly, that was what a teacher in Maine believed when she started using FC in late 1992, never expecting the words she coaxed out of a young girl to bring catastrophe along with them.
34
THE CHILD WITHIN
Afterward, Janyce Boynton blamed herself most of all.
For the words that came out.
For what that family went through.
For believing.
In 1992, Boynton had eight years of experience as a special-needs teacher and, more recently, as a speech clinician. The job never paid much, but she had not gone into teaching for the money. For her, helping severely disabled children improve their odds of finding a place in the world was reward enough. Boynton, who worked for the Ellsworth public schools in Maine’s Hancock County, was routinely given the “difficult” cases, like sixteen-year-old Betsy Wheaton. Boynton first started looking into FC to find some way to communicate with Betsy, who had autism.
One of her colleagues, a teacher’s aide who had taken a workshop in FC, had recommended it. She sat down with Betsy and, using a photocopy of a keyboard laminated in plastic, showed Boynton how the method worked. Almost immediately, Betsy’s finger was touching letters in coherent patterns, giving coherent answers to simple “yes/no” questions. Briefly, Boynton doubted. It was far more likely that it was the aide holding her hand—not Betsy—who was coming up with these answers. But then, after watching some more and seeing how convinced the aide was, she reconsidered.
If this were real, it would be so wonderful for Betsy. She was a restless girl and occasionally aggressive, but Boynton had always had a gut feeling that this combative behavior came from a frustration at her inability to communicate. Sometimes she would catch Betsy staring at her with an intensity that suggested she had something she wanted to say. Now, when she sat down and took Betsy’s hand lightly to try FC for the first time, she felt it: this was real. Their two hands might have been moving as a paired set, but Boynton’s was only along for the ride, merely providing support.
Words didn’t come right away. At first, most of what she and Betsy produced together were strings of apparently random letters. But after a few weeks, single words began to emerge, appropriate to the context, as when Boynton would ask her a series of “fill in the blank”–type questions. One of the first times this happened, it was the word “t-o-u-r-i-s-t-s,” when someone had asked Betsy, “Who climbs mountains?” Another time, asked to build a sentence around the verb “fell,” from a card pulled out of a deck of vocabulary words, her finger typed out, “t-h-e-s-o-n-o-f-a-b-i-t-c-h.” Then she pointed to the card—fell—and then her finger returned to the keyboard, typing letters that completed a sentence: “o-n-t-h-e-g-r-o-u-n-d.” Boynton was amazed, delighted to discover a sense of humor in her young student. Even if the whole process was plodding and lacking in fluency, Boynton took these productions as proof that hidden behind Betsy’s silence was a functioning intellect. And that was thrilling.
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THE CHILD WITHIN. It had always been the most tantalizing conception of autism, this idea of the “real” son or daughter hidden behind the mask of autism. Although Leo Kanner never used the phrase, he helped inspire it by drawing attention to the looks on the faces of the eleven children he first treated. Kanner wrote of “the impression of serious-mindedness,” “an expression of beatitude,” and the “good cognitive potentialities” with which “all [were] unquestionably endowed.” As he wondered about the “placid smile” he saw play across the lips of the children when they were most content, which was when they were left in their inner worlds, it was as if he were wondering who these children really were—or would be—if they were no longer constrained or confined by their autism.
The power of this idea was reflected in how often it entered the dreams of autism parents—literally. “Last night, I dreamed my son could speak.” Such statements would appear, with slightly different wording, again and again in memoirs, in online forums, and in conversations with mothers and fathers who teetered between hope and anguish. The possibility of “liberating” their child lifted them up with hope. The impossibility of it left them feeling crushed with guilt, convinced that they must not be trying hard enough to break through. It was as though autism was a locked room and they were constantly in search of the key.
The fierce desire to locate “the child within” was in many ways unique to families dealing with autism. In families dealing with other developmental conditions, such as Down syndrome, love translated into embracing a child as he or she was, and providing as many opportunities as possible without hoping for a radical transformation. The parents of children with autism loved their children no less, but many of them felt a strong impulse to rescue them, and sought out breakthrough treatments to help them do so.
This was especially true of the parents of newly diagnosed children, who were likely to be under five years old. After all, the one point on which nearly all experts agreed was the need to start early intensive therapy before the age of five. New autism parents did not even want to be near older parents who might advise them not to raise their hopes too high. Neither did they appreciate the cautions voiced by scientists, who were apt to suggest that the fad treatment of the moment lacked empirical support. The newcomers shut out these warnings. When there was no time to waste, when there was a child to save, surely it made more sense to try something instead of nothing—as long as the idea seemed reasonable and no one was likely to get hurt. Thus, in every decade after the 1960s, parents tried all manner of alternative therapies, which came and went, causing excitement and then, usually, disappointment.
In South Africa, they gave their children enemas with diluted bleach as a way to rid the body of evil spirits; elsewhere, the same method was used to kill “bacteria” caused by autism. Parents signed up for “holding therapy,” promoted by a New York psychiatrist named Martha Welch and endorsed by a Nobel Prize–winning ornithologist. It involved mothers hugging their children as tightly as possible while shouting at them until the children calmed down, which was seen as the beginning of healing. In France, parents tried “packing therapy,” in which the child is wrapped tightly in wet, refrigerated sheets, like a cocoon, with only his or her head sticking out.
Other approaches involved megavitamin regimens, special diets, and exposure to dolphins and horses. All of these came with a plausible theory, and always with reports from parents who, at least for their own kids, had seen some good come from the method. The news most often spread by word of mouth, but sometimes a new therapy surfaced through massive news media coverage.
That was the case in 1993, when Victoria Beck, a New Hampshire mother, took her three-year-old son five hundred miles to a research hospital in Maryland loo
king for treatment that might relieve his constant and severe gastrointestinal pain. As part of a diagnostic test, Parker, who had autism, received a pig hormone called secretin. Within days, his digestion, speech, and sociability had drastically improved. Beck began telling her son’s story to the media, after which a massive demand for secretin developed. In some places, the price shot up as high as $8,000 for four doses, for a drug that costs less than $180 to produce. Clinical trials would never demonstrate any benefit comparable to the progress made by Parker.
As with secretin, virtually all of these therapies failed to pass scientifically controlled tests of their validity, and most parents who tried them were disappointed. Wiser after such experiences, many of those parents concluded that their time and energy would be better spent not chasing the latest miracle cure.