In a Different Key: The Story of Autism (53 page)

Shane had already been an expert witness at several trials where FC had been used to provide testimony accusing parents or others of sexual abuse. Shane was always there as a defense witness, and he always succeeded in discrediting the method. From the stand, he would explain in detail why the claims made for FC flew in the face of everything known about autism, which FC had not “redefined,” despite Biklen’s claims. Further, he argued that the sophisticated poetry and prose reported to be the work of young children strained credulity—as did the fact that so often the kids’ fingers were pressing the keys while looking anywhere but at the keyboard.

But Shane’s most significant contribution in such trials was his construction of vivid, simple experiments that could be carried out in front of a judge and jury to help them understand, in minutes, if they could trust FC when considering whether to sentence someone to prison. When Phil Worden called him, Shane outlined a testing procedure in which he would simultaneously display pictures to both Betsy and Boynton. They would sit side by side, to enable facilitation, but a divider would prevent each from viewing the picture shown to the
other. Then Shane would ask Betsy to name the thing in the picture. The catch was that, sometimes, Betsy and Boynton would be shown the identical picture, sometimes two different ones. If FC was real, it should not matter what Boynton saw, as she was merely the facilitator. If FC was real, the messages should name only the items in the pictures shown to Betsy, every time.

Worden had to work at breaking down Boynton’s resistance to having FC—and, effectively, Boynton herself—put on trial in this way. He appealed to her rational side, and to her sense of decency, arguing that, considering what was at stake for the family, eliminating the questions about FC was the humane thing to do. Boynton took this all in, and, after a good deal of soul-searching, she agreed with Worden that, in this situation, the method needed to be vindicated. At some level, she too wanted to know for certain whether she or Betsy was the author of these awful allegations. She gave her consent, and a date was set for Howard Shane to fly up from Boston to put FC on trial.

By now, it had been more than a month since Betsy’s first alarming accusations. When Boynton arrived at the school for the test, she found an anonymous note on her desk, which read:
“That student is lucky to have you in her life.” In that moment, Boynton was not so sure. As she entered the room designated for the test—the same room where she and Betsy had often worked together—she saw the teenager already seated, holding a stuffed animal, and she once again felt a deep connection and love for this girl.

Shane smiled at Boynton and told her not to be nervous. Then he took out the pictures. One by one, he showed one set to Betsy and another to Boynton. In the first round, he showed each of them a picture of a key. Asked by Shane to identify the thing in the picture, Betsy, with Boynton touching her arm, typed
KEY
.

Next Betsy was shown a cup. But this time, with Boynton still helping, she typed
HAT
. After that, she was shown a picture of a dog but typed
SNEAKERS
. And when shown a boat, she typed
SANDWICH
. Each of these answers was wrong, but not arbitrary. Each wrong answer corresponded precisely to the images
Boynton
was seeing on her side of the divide. It went on like this for a while, with a wrong answer
produced every single time Boynton saw a picture different from what Betsy saw. And every time, that wrong answer matched the picture in front of Boynton.

The testing continued for three hours, with breaks. Shane had Boynton leave the room, for example, while he blew up a balloon, released it, and let it buzz around everyone’s heads. Then Boynton was brought back in and Betsy was asked what Shane had just shown her.
BANANA
, she typed.

The result was unequivocal. There was no real verbal communication from Betsy that day. And the implication was damning: there never had been any communication.

Boynton left without being told the outcome. It was only several hours later, when she reached her apartment and checked her answering machine, that she heard the message telling her the results. She curled up into a ball and sobbed.

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.

—

R
EMARKABLY
, J
ANYCE
B
OYNTON
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.

—

I
N
J
ANUARY
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 ABC 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.