In a Different Key: The Story of Autism (52 page)

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Authors: John Donvan,Caren Zucker

Tags: #History, #Psychology, #Autism Spectrum Disorders, #Psychopathology

BOOK: In a Different Key: The Story of Autism
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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.

But not everybody reached that conclusion. Many of the alternative approaches considered discredited stayed alive indefinitely, out of the media limelight, practiced by parents who made only the modest claim that they saw improvement in their own kids. But no one could ever refute with certainty the possibility that, perhaps for some extremely small number of people, something real and therapeutic did take place at one time, or at least appeared to. Neither can anyone accuse the parents still engaged with such practices of not trying hard enough to find the key to unlocking the child within.


A
S SHE CONTINUED
working with Betsy, Janyce Boynton, reading some of the literature published by the FC movement, was learning that successful communication depended on much more than mere mechanical technique. It required an almost spiritual commitment as well, as FC theory held that effective facilitation rested on a deep level of trust between the person typing and his or her facilitator. It further required the facilitator’s absolute faith in the process and in the reality of the facilitated individual’s intellectual capacity. This meant that, at all times, Boynton was to address Betsy as she would any person who could fully understand every word spoken to her. This could be wearying, as Boynton had to do all the talking, but she found the effort and the hours profoundly rewarding. She also took deep satisfaction from Betsy’s growing trust in her—as evidenced by the increasing quality of the language Betsy was producing. Boynton reciprocated that trust with loyalty. Betsy became her main priority. As the girl’s crucial link to the world, Boynton would stand by her and stand up for her, no matter what.

And then, mysteriously, Betsy started hitting Boynton. It began during the first week of January 1993, at around the same time that Boynton had made arrangements to take a course in FC given at the University of Maine to improve her skills. Over the course of several sessions, Betsy showed signs of agitation, scratching Boynton and slapping her hand away. Boynton persisted, knowing that the FC literature warned facilitators to expect periods when frustration and anger might surface. One day, however, Betsy smacked Boynton in the face so hard that it took Boynton several moments to regain her composure. In that moment, the thought that crossed her mind was that Betsy was trying to tell her something—something for which she had not yet found words. Then she had an intuition. The blow, she thought, must be a sign of trouble at home.

Among Boynton’s colleagues in special education, it was a given that, when a disabled child began acting out, the behavior could be the result of abuse, and that it was a teacher’s duty to be alert to that possibility. Also at that time there was something of a nationwide panic
over accusations of widespread sexual abuse in child day-care centers around the country, with several teachers convicted and sentenced to lengthy prison terms.
These cases, nearly all of which were ultimately debunked, nevertheless made educators extremely vigilant about the possibility of abuse.

Then, to Boynton’s horror, the words spelled out by Betsy’s pointing finger turned decidedly dark and lurid. It started with curse words and a few relatively benign complaints about her father. Then, a few sessions later, in blunt and harsh language, explicit references to Betsy’s father emerged—references to his touching her genitals and breasts.

Sickened, and frightened for Betsy, Boynton took her own handwritten transcripts of the FC sessions to the head of the high school’s special-education department, who in turn delivered them to the head of guidance. Two days later, Boynton, Betsy, a police officer, and a worker from the state Department of Human Services (DHS) sat clustered behind the closed door of a small room used for speech therapy, where the DHS investigator wanted to conduct an interview with Betsy. Boynton was nervous, unsure whether outsiders would understand her role as Betsy’s facilitator, or recognize that the typed messages were really the words of a capable, intelligent, but upset sixteen-year-old.

Boynton was relieved when the DHS investigator began the interview by addressing Betsy directly.
She looked at her and said, simply, “Hi.”

At this, Betsy’s hand, supported by Boynton’s, moved to the keyboard and typed out two letters.
HI
.

The investigator smiled, and Boynton relaxed.

But as Boynton facilitated the next part of the exchange, a new feeling took hold of those in the room. It was horror. As Betsy’s finger pounded at one key after another, Boynton transcribed a shockingly explicit description:
HE FUCKS ME AND AND HHE FUCKS ME AND HE MAKES ME HOLD HIS PENISSS
.

“Who touched you?” the DHS woman asked aloud. “Where did they touch you?”

MY FATHER
.

“When?” Betsy was asked.

AFTER SCHOOL
.

“Where?”

IN MY HOUSE
.

More questions elicited even more disturbing details.

SOMETHING GOES OFF

“What something goes off?”

HIS FUCK

“What does that look like?”

IT LOOKS LIKE

S F A A SLIMY AND
.

…DDAA WHITE

I’M AFRAID I AM AFRAID RAID

“What are you afraid of?”

MY FATHER AND MY MOTH…

“Are you afraid of Jamie?”

YES

Repeatedly, Jamie, her brother, was described as abusing Betsy, as well as being abused himself by his mother and father.

“Where is Jamie?”

HE IS FUCKED AND HE GAF FF A FF

“Who fucks your brother?”

MY FATHER AND THE BITCH

With breaks, the interview went on for four hours, with increasingly graphic details. At one point, Betsy was shown anatomically correct drawings of the male and female bodies, side by side, and asked to indicate where her father’s “thing” was. She appeared to miss this question, pointing to the pubic area on the drawing of the woman. Asked a second time, a little later, Betsy pointed to the man’s penis and then typed
PENIS
.


B
ETSY WAS NOT
permitted to go home to her parents that night. Within hours, a judge had issued an emergency order transferring her and her brother into the state’s care. Arrangements were made to place each into foster care—but separately, because fourteen-year-old Jamie was considered not only a victim but a suspect. The police thought he had been “brainwashed” by his parents into being a sex abuser. A willing family was quickly found for Jamie, but the DHS had difficulty
placing a girl as disabled as Betsy. This was resolved when a friend of Boynton’s brother agreed to shelter her on a temporary basis.

Betsy’s parents were distraught. Her father, Jim, an assistant to a ferryboat captain, and her mother, Suzette, who worked at a local market cleaning fish, had not only lost both their children. They now faced the real possibility of being prosecuted for the rape of their children. In their fear and confusion, they knew only one thing with certainty—the allegations were pure fabrications. So confident were they that this obvious fact would be established quickly that
they waived their right to an attorney and agreed to cooperate fully.

But that put them in the terrible position of having to call their own daughter a liar. Because, like Boynton—and the school authorities and the police—Jim and Suzette believed in FC. They had found it exhilarating, over these past several months, to learn for the first time what their silent girl was thinking. Like many parents whose children were now “speaking” through FC, they had been unsuccessful as facilitators themselves. For some reason, the words did not come when they themselves held Betsy’s hand. So they were grateful that Boynton had established the trust to make the method work. The pain of hearing these terrible falsehoods was all the worse because of their certainty that they came from Betsy herself.

Then a skeptic stepped into the investigation. Phil Worden was a local attorney appointed to serve as temporary legal guardian for the two children. Worden was a father himself, with two boys only slightly younger than Betsy’s brother, Jamie. Worden did not come at this assignment with an adversarial mind-set. Determined to understand the real threat to Betsy, he sat down and talked with all the adults in the case, including Betsy’s parents. They struck him as forthright, and it impressed him that they were as anxious as anyone for the investigation to move forward.
Boynton also impressed him as honest and passionate about her duty to do what was best for Betsy. He could tell that she was terribly upset about seeing the Wheaton family split apart. Unlike Boynton and Betsy’s parents, however, he was not sure that he trusted FC.

From the first time he saw Boynton and Betsy together, he spotted things in their interaction that everyone else seemed determined to
overlook. The three of them met with the DHS caseworker and a detective from the state police in the same small room in the high school. The meeting had been called so that he could hear the story from Betsy herself. With Boynton supporting her hand and index finger, Betsy’s fingertip tapped out
HI PHIL
on the laminated image of a keyboard. Worden was taken aback. In that moment, it seemed so obvious to him that Boynton was directing the typing, and just as obvious that every other adult in the room thought otherwise. It felt surreal, as if by not drawing attention to the fiction in front of him, he was participating in it. Nevertheless, he kept his doubts to himself and proceeded to ask Betsy some questions.

The way she reacted made him even more of a doubter. Throughout the session, Betsy was agitated, flinging herself around so vigorously that she was not even looking at the keyboard, even in the moments when, her hand in Boynton’s, her index finger continued to press on keys, spelling out words. Suddenly, she punched Boynton so hard in the face that her glasses went flying. Boynton chided her: “Betsy, it hurts me when you hit me. I want to talk with you but I cannot do so if you hit me.” To Worden, none of this looked like anything he would call communication with words. He was not sure he had seen Betsy press even a single letter on the keyboard on her own.

The caseworker must have picked up on Worden’s doubt, because she invited him to join her on the side of the table where Boynton was transcribing, character by character, the letters Betsy’s finger touched. Gazing at the sheet of paper, Worden was amazed to read a coherent message, supposedly composed by Betsy just then, lobbing more accusations at her father. It said that she was afraid of her father, that he “fucked” her, and that she needed protection. Worden felt compelled to ask how the girl could possibly have delivered so much information when she was not even looking at the keyboard. The answer was not persuasive. Betsy, Boynton said, had memorized the layout, so she did not have to look anymore.

After this meeting, Worden could not shake the feeling that the true victims in Betsy’s case might be her parents. He set out to give himself an expedited education on the literature on FC. He turned to Betsy’s other teachers, who provided him with several laudatory
articles about FC, one of which was written by Doug Biklen. On his own, though, Worden came across an unfavorable reference to FC in Bernie Rimland’s quarterly autism newsletter.
Soon he was on the phone with Rimland himself, who let loose a tirade against both FC and Doug Biklen, charging that the method was misleading and destructive. Filling Worden in on FC’s origins and the problems with it, Rimland revealed that the Wheatons were not the first family to find themselves facing charges of sexual abuse of their own child—with the accusations communicated via facilitated messages.

Indeed, as Worden learned, the false sexual-abuse scenario had played out again and again in the three years since FC had been in use. It was an echo, in a way, of the day-care sexual-abuse hysteria, which was still at a high pitch in several parts of the country. Rimland cited several cases where fathers, teachers, and even social workers had been falsely accused via FC. Innocent fathers had been jailed while their alleged crimes were investigated, Rimland told him, because police were persuaded that facilitated communication was real. What Worden needed to do, Rimland advised, was to arrange for a rigorous test to determine whether the words attributed to Betsy came from her or from Boynton.

This made sense to Worden, and he thought it would also make sense to Boynton. Their conversations until then had been respectful, professional, and frank, and now they continued in this manner. Worden pointed out that it would serve everyone involved if the authorship of Betsy’s words could be definitively confirmed. Boynton saw his point. Also, she had no doubt that a reliable test would prove that the words were Betsy’s. Nevertheless, she hesitated, because she knew that in the broad FC community to which she belonged, testing FC’s validity was frowned upon. It was almost seen as an act of betrayal, because to ask whether the communication was real was to violate the “presumption of competence” principle. Every facilitator was expected to feel not only an emotional but a philosophical commitment to that principle. At the training session at the University of Maine that Boynton had recently attended, the “don’t test” imperative had been voiced again and again. Trainers even made the argument that no valid test could exist for FC, because the process of testing would itself
undermine the bonds of trust that made FC work. It was a profoundly unscientific position, but to true believers in FC, it was dogma.


T
HREE WEEKS LATER
, the Wheatons were still a broken family. Neither Jim nor Suzette Wheaton had been arrested, largely because Worden insisted that no steps be taken against them until Betsy’s ability to communicate via FC had been validated. In the meantime, he had contacted a Harvard speech pathologist named Howard Shane, whose program at Harvard specialized in developing hardware and software to enable communication by people whose ability to manufacture speech was dysfunctional—due to brain damage, perhaps, or a degenerative disease such as multiple sclerosis. It was technology like this that allowed British physicist Stephen Hawking to communicate. In Hawking’s case, his eyeglasses contained electronics that responded to movements of his cheek, which then produced verbal output by a computer. Shane had no complaint with presuming competence. But
he believed in technology, not FC.

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