by John Donvan
Several months later, PBS broadcast a documentary called Prisoners of Silence, in which actors reenacted, nearly verbatim, the experiment carried out between Shane, Betsy, and Boynton. There had been some negative coverage of the case before, but the broadcast marked a turning point, after which FC’s fall from grace was nearly instantaneous, not just in Maine but nationwide. Viewers who saw Shane’s simple, intuitive experiment with their own eyes felt they had just witnessed the debunking of a complete sham. As media coverage turned universally hostile toward FC, skeptical school districts across the nation dropped it as quickly as they had embraced it three years earlier. Enrollment in FC training courses plummeted, and students with autism who had been sitting through advanced classes in math and physics—because their “facilitated” selves performed so well there—were pulled back into their former special-education classes, where their ability to use words was assumed to be nonexistent. They once again became children for whom the presumption of competence was likely to be denied the benefit of the doubt.
Douglas Biklen was pilloried by the press and in academia. His early claim that FC forced the “redefinition” of autism had never sat well with those who had spent years closely studying the condition. Now that FC had been revealed as bogus in such a public fashion, they thought it was unforgivable that Biklen would not admit that he had been wrong about the method.
But Biklen did not believe he had been wrong. In 1994, as a series of studies debunking FC appeared in peer-reviewed journals, Biklen began attacking the methods of the debunkers, reiterating the distinction he said existed between well-executed and poorly executed FC. He also strove to set the record straight about what, exactly, he was claiming for FC. “I’m not walking around saying everybody’s smart, or that everybody who uses FC is brilliant,” he told the Associated Press. “What I am saying is that we need to realize that not being able to speak is not the same as having nothing to say.”
Fortunately for Biklen, Syracuse University stood behind him, despite the widespread disparagement the school faced for having established a Facilitated Communication Institute for him to run. In 2006, the institute was still there, and Biklen was promoted to the post of dean of the School of Education. In 2007, his work on FC was cited as a point of pride for the university by its chancellor, Nancy Cantor, who noted blandly that “the controversy about facilitated communication in the research literature in psychology and education never seems to tire.” It was also true that the institute—renamed the Institute on Communication and Inclusion in 2010—remained a beacon for outside funding for the university, drawing significant contributions, estimated to be in the millions, from private foundations whose faith in FC, like Biklen’s, never wavered.
In 2014, Biklen retired.
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REMARKABLY, JANYCE BOYNTON did not stop her use of FC immediately after the failed picture test. Embarrassed and shaken by the stunning failure of a method she believed in so deeply, Boynton at first had hopes of proving that it had been Shane’s test, not FC, that was at fault. For several weeks, she continued to hold FC sessions with Betsy, during which still more allegations of sexual abuse poured out. When Boynton duly reported these, Betsy’s parents requested her removal as their daughter’s teacher.
And then, after briefly wondering whether she was losing her mind, Boynton began to read more deeply about FC. Racked with guilt over the harm that had come to the Wheatons, she discovered how easily facilitators could steer word production without even realizing they were doing so. It sounded impossible, but experiments showed it happening again and again. Reading these papers, Boynton realized something about herself: that all along, she had desperately wished for the words to be Betsy’s because she so wanted her to have a voice. The rest of it—the ugly fantasies about Betsy’s home life—remained opaque to her.
Close to the end of the 1993 school year, Boynton informed her superiors of her change of heart about FC and urged the school district to suspend all use of FC in its curriculum. In a statement, the district announced it was doing just that.
The PBS documentary debunking FC aired in October 1993. Boynton had declined to be interviewed for it, and the program did not use her name when it re-created the picture test. Soon, however, she felt a backlash against her personally. A commentator in the local newspaper demanded that she be publicly named and ousted from the school system. At the same time, Boynton learned that the larger FC community wanted nothing to do with her. She heard herself being described in FC circles as a “bad facilitator,” with the implication that she had brought enormous damage to the movement by her ineptitude. Somehow, in the standoff over FC, Boynton had been cast as the villain of the piece by both sides.
In 1994, Janyce Boynton was filmed apologizing to Betsy’s parents in person for a television story looking back at the case. Following the debacle, it was the one and only time they met, but in that one meeting, the Wheatons were gracious and forgiving. Some years later, the family took another brutal hit, when Betsy’s younger brother, Jamie, committed suicide. He was in his early twenties, and he killed his nineteen-year-old wife on the same day. His mother, Suzette, later said that Jamie was never the same after the trauma of the temporary family breakup in 1993.
Janyce Boynton worked in the Ellsworth schools for six more years, then moved to a new town, where she began making and selling arts and crafts.
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IN JANUARY 2012, Boynton was tracked down by a reporter from ABC News. She was seeking Boynton’s comment on a story airing that night on the 20/20 magazine show. Boynton was stunned when she was told the reason why: the catastrophe had repeated itself—yet again.
That night, Boynton watched as 20/20 told the story of a family named Wendrow, who lived in West Bloomfield, Michigan, and who, almost fifteen years after her own disastrous experience with FC, had pressed their local school district into funding a facilitator for their fourteen-year-old daughter, Aislinn, who had autism and could not speak. Despite the broad scientific consensus that the technique had been discredited, FC had quietly retained a small following among families who, like Doug Biklen at Syracuse University—where FC continued to be taught—maintained that the blanket condemnation was too broad and overlooked instances where the method really worked. Practicing at the margins of respectable therapies, facilitators and the families, not surprisingly, formed a self-reinforcing subculture of support for the practice. Julian and Tal Wendrow, Aislinn’s parents, joined this subculture in 2005, after putting their hope in a wide variety of other therapies—from ABA to PECS to supplements to music therapy to craniosacral massage—none of which did much to alleviate Aislinn’s difficulties.
When they tried FC, and the words began to come, the Wendrows celebrated. In part, it was because they saw how quickly the rest of the world changed its attitude toward their daughter, once people believed that she could use words and was intellectually intact. They also loved chatting with her and seeing her doing so well in school.
But then, just as in Maine, the facilitated child began to allege sexual abuse by her father. The police and prosecutors bought into the validity of the communication and threw Julian Wendrow behind bars for nearly three months, including, bizarrely, seventy-four days in solitary confinement.
Then, as 20/20 reported, Howard Shane, now nearly twenty years older, showed up in Michigan and demonstrated that the communication was an illusion, inadvertently conjured by the facilitator. By the time of the broadcast, Julian Wendrow had been set free, and the family was reunited. The Wendrows were now suing the law enforcement authorities, which is what had prompted the 20/20 coverage.
Boynton had not talked about FC in public for nearly two decades. But when the ABC reporter asked for comment, she wanted to answer. She was sad, she said, that it had happened again. She explained that it was easy for facilitators and families to delude themselves, and to forget to suspend disbelief about a patently improbable process, because they so badly wanted it to be real. She told the AB
C reporter that she had tried to be optimistic, after her own role in the earlier catastrophe, that at least that episode would serve as a lesson to others to be skeptical about FC, and to stay away from it. That night, however, after watching the 20/20 story in full, Boynton’s heart sank at seeing yet another family learn about the dangers of FC the hard way.
Having broken her silence already, Boynton decided that she wanted to say more. Later in 2012, she published an article in an academic journal devoted to clinical and educational solutions for communication impairments. Her article was entitled “Facilitated Communication—What Harm It Can Do: Confessions of a Former Facilitator.” It was a broadside against what she called “the myth of FC.” She publicly regretted her own gullibility, and appealed for hard-nosed realism in situations where the dream of reaching the child within can blind all reason.
That hope, though, can persist even in those who have been hurt by nurturing it. Even in Julian Wendrow. After his daughter accused him of sexual abuse, and after he nearly ended up in jail for years because of it, he was forced to abandon his faith in FC. But he confessed that he did so only with great reluctance, and that the price he paid was worth the joy he experienced for as long as he believed that FC was real, and that his daughter was really talking to him.
Because he saw how people treated her differently when they still thought the words were hers.
And because he had so loved hearing everything she had to say.
The dream was that powerful.
35
AN ELUSIVE DEFINITION
“It forced me to redefine autism.” When Douglas Biklen spoke these words, in 1990, about facilitated communication, he did not realize how insolent it sounded to the psychiatrists and psychologists who had labored in the field for decades. With nothing more than a degree in special education, Biklen was challenging “the received knowledge coming from almost fifty years of energetic and sustained research into the condition of autism.” To the established experts, it was appalling that Biklen, whom Eric Schopler called an “ideologue,” would dare claim the right to redefine autism.
And yet that was exactly what the experts had been doing since the time of Leo Kanner—debating one another and jockeying to advance their own definitions and redefinitions of autism: its shape, its scope, its causes. This continuing push and pull happened mostly out of sight of the lay public, which assumed that when people with PhDs and MDs used the word “autism,” they all meant the same thing. But that was never true, because the definition of autism has always been malleable—determined by consensus, or by whoever among the jockeying experts was most persuasive at any given moment. All the big ideas about autism over the years—from mother blaming to concepts with more solid science behind them, like mindblindness, weak central coherence, and the unifying spectrum—were still only hypotheses. Yet most were treated, at the height of their popularity, as objective fact. At least until the next big idea came along.
Given the elasticity of the definition, it has been easy for competing interests to cast autism as what they want it to be, which has at times led to enormous strife. Over the decades, autism has been seen as a behavioral, or a medical, or a psychogenic challenge. It has been blamed on mothers and it has been blamed on vaccines. It has been answered with “substitute mothering,” megavitamins, facilitated communication, slaps in the face, hugging therapy, and, in some African countries, with exorcism. At this writing, autism is viewed as occurring on a spectrum, a concept that has the virtue of promoting inclusiveness but has also caused acrimony between those who see autism as a tragedy and those who claim it as a gift and an identity.
For years, many of the most respected figures in the autism community have complained about the lack of a single, incontrovertible definition of autism. In 1968, for example, Michael Rutter lamented the “hopelessly confused state of affairs…more confusing than it need be.” A full ten years later, in 1978, Eric Schopler warned that scientists were critically misunderstanding one another’s work “because criteria for diagnosis are different.” One more decade after that, in 1988, Fred Volkmar and Donald Cohen wrote in frustration about the “long and controversial history of the concepts surrounding autism.” And in 1998, Volkmar and Ami Klin complained about “the confusion and the plethora of diagnostic concepts” surrounding autism, and, by then, Asperger’s syndrome as well.
One of the autism community’s favorite adages has long been “If you’ve met one person with autism, you’ve met one person with autism,” which captures the essence of the problem even as it affirms the complex variability of autistic traits. It is this enormous variability of autistic traits that makes defining autism so challenging. That was what hampered Victor Lotter’s effort to count people with autism in the early 1960s, when he had to draw a line to define autism that even he considered arbitrary, or at least subjective, given that it was based on only his own observations. Nevertheless, the subjective judgments of Lotter and other researchers had real consequences, especially in the field of epidemiology. Valid comparisons among populations in different eras and places are impossible when definitions are highly inconsistent. Lotter thought the lesson worth sharing in 1966, when he cautioned that the true prevalence of autism would remain impossible to determine until everyone agreed on what it was they were trying to count.
Debates about who counted as autistic were not only academic; they had a profound effect on the lives of individuals. After all, a person must be diagnosed with autism before he or she can gain access to support services.
Repeatedly, one researcher or another would design a set of criteria intended to bring an end to the chaos—proposing a definition or working model meant to stand as the last word on the matter of what is meant by autism. The effort put into this was enormous. The goal, however, remained elusive.
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MILDRED CREAK HAD tried to bring order to chaos in 1961, when she published her Nine Points. These were quickly found wanting by the clinical world, which tore them to shreds. She likened the experience to feeling as if she were “throwing them to the wolves.”
Michael Rutter also tried to make sense of the mess in 1972, when he successfully campaigned to retire the diagnosis of “childhood schizophrenia,” which had long competed with the diagnosis of autism in children. It was “high time,” Rutter argued, for that troublesome concept to be “politely and respectfully, but firmly, put into its proper place in the section on ‘the history of psychiatry.’ ” Still unsatisfied, he produced a new framework for autism, which became known as the “Rutter criteria,” in the early 1970s. Based on Rutter’s and other researchers’ epidemiological and clinical studies, the criteria specified that autism manifested itself in three domains, in varying degree—through language impairment; social impairment; and restrictive, repetitive patterns of behavior. An inspiration for Lorna Wing and Judith Gould’s later “triad of impairments,” the Rutter criteria gained a following, and for several years thereafter they were often cited by researchers as the standard they relied on. Some of this acceptance was due, no doubt, to Rutter’s standing as one of academic psychiatry’s most lucid thinkers and writers. He was adept at defining the parameters of a topic, and he had a clear, unpretentious style that made his conclusions that much more forceful. “The question was not how to differentiate autism from normality. The hospital porter could do that without skilled assistance,” he once wrote, on the challenge of clarifying what autism looked like in children seen at the Maudsley.
By 1977, however, the National Society for Autistic Children was promoting its own definition, which added a fourth domain: sensory processing. Developed by UCLA researchers Edward Ritvo and B. J. Freeman, this definition made “abnormal responses to sensations” also central to the experience of having autism.
And then there was the American Psychiatric Association’s DSM, which constituted its own saga.
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IN 1993, WHEN Fred Volkmar and his colleagues were trying to get Asperger’s syndro
me into the DSM, the book had already been in print for more than forty years, with revised editions published whenever psychiatry changed its mind, which was surprisingly often.
After 1980, for example, the DSM was overhauled at least once a decade, with whole diagnoses heavily revised or dropped altogether, and new diagnoses added. Most famously, after much pressure from the gay community and its allies, and despite the vociferous objections of a contingent of mostly older psychiatrists, the DSM retired the diagnosis of homosexuality as a mental illness in 1972. Though this and other amendments were billed as the positive consequences of better research and understanding, they revealed the extent to which psychiatric diagnosis is influenced not only by scientific data but by cultural, political, and other factors.
Autism was not included in the DSM until 1980, in the edition known as DSM-III, which appeared nearly forty years after Leo Kanner published his first paper on the condition. It proved to be a protean definition—altered significantly in 1987, and again in 1994. Although it was changed only slightly in 2000, it underwent a dramatic rewrite, accompanied by much angst, in 2013. Throughout this process, the length of the definition waxed and waned. The number of words in its symptom checklist, originally about seventy, jumped to more than six hundred in one edition, shrank to three hundred in the next, and then expanded again, to almost nine hundred words, two editions later. The name kept changing too—from Infantile Autism to Autistic Disorder to Autism Spectrum Disorder. Most critically, the symptom checklist the DSM writers developed to identify those with autism kept being revised. In one edition, a patient had to match a minimum of 8 out of 16 criteria to receive the diagnosis. In another, he or she had to match at least 6 out of 12. In the second case, according to Volkmar and Brian Reichow at Yale, there were more than two thousand different symptom combinations that could produce an autism diagnosis. The addition of Asperger’s disorder as a separate diagnosis in 1994 further complicated the diagnostic picture.