The Language of Suspicion : With an Adult’s Hand Gently Supporting Hers, an Autistic Child Who’d Never Spoken Could Type Messages on a Keyboard. It Seemed Like a Miracle--Until the Messages Changed

When Laura Storch was pregnant with her second child, she and her husband, Mark, constantly played lilting reggae songs like “Could You Be Loved?” for the baby inside her, and when their beautiful 8-pound girl was born, the New York City couple gave her the middle name “Marley,” for the musician who gave them so much joy. For Mark and Laura, who met on a blind date set up by two benevolent aunts, married young and had a son a year later, Jenny Marley Storch was the last puzzle piece in their American dream family.

Their dark-eyed baby girl met all the pediatricians’ milestones, crawling at 6 months, walking at a year. But Laura, whose brunette-framed face betrays a hint of steel just under the surface, always knew that something was different about her child. When she asked the doctors why her baby seemed so aloof, why Jenny wouldn’t make eye contact, they brushed off her concerns. “They told me it was me,” she says. After age 1, Jenny became hyperactive; the doctors labeled her “learning disabled.” But it would be another three years before they had a name for what the problem actually was.

In 1979, when Jenny was 2, Mark and Laura moved to Shokan, N. Y., a town of less than 4,000 nestled in the exurbs near Woodstock. Mark began teaching science and coaching girls’ basketball and track at the high school. Mark and Laura had been thrilled when Jenny began to speak, late, at 2 1/2. Their excitement was not diminished by the fact that she could only echo what others said. They were devastated, then, when she abruptly and permanently stopped speaking a year later. By the time Jenny was 4, she was so antisocial that “she couldn’t play with the other children,” says Laura. A long evaluation at a hospital brought a new diagnosis: autism. “It was devastating,” says Laura. “They offered us no hope.”

Autism has no cure, and treatments have been largely unsuccessful. Doctors diagnose it by ticking off a checklist of behaviors that include head-banging, lack of speech and, most wrenching, a seeming inability to give or receive love. Though others with the same diagnosis may have quite different symptoms, for Jenny autism meant the constant loss of skills she’d learned--first speech, then the sign language her parents taught her later. And she had tantrums so severe that her grandmother, who sometimes watched Jenny when her parents went out, could not control her.

Autism consumed the Storches, shaped their entire life. It was months between Jenny’s diagnosis and the first time they met another parent of an autistic child, so Mark and Laura founded the local chapter of the Autism Society of America. And because she was such an involved parent, Laura was hired to teach at the Children’s Annex, the local private school Jenny attended. The time it took to care for their beloved, difficult daughter meant that the Storches barely had a social life. “You couldn’t let her out of your sight. She had to be watched all the time,” says Mark. “One time she sneezed, and a rusty thumbtack came out of her nose.”

A respite from that constant care came in 1990, when Lisa, a teacher at Laura’s school, took a shine to Jenny. Lisa seemed, finally, to become “Jenny’s one friend,” and the state agreed to pay her for the occasional hours when she would watch Jenny outside of school. Mark and Laura at last could go out and enjoy hiking, or just spend time alone.

But they got their biggest thrill the next spring. Every parent of an autistic child hopes for a miracle--a cure, a way, somehow, to make contact--and the Storches seemed to have found it in the form of a technique called facilitated communication, or FC. Using a method developed by an Australian educator, Lisa would place one of Jenny’s hands on a computer keyboard, then hold it in her own. Helped by Lisa’s steadying hand, Jenny immediately began to tap out statements describing her feelings and needs. “ ‘I-want-to-watch-Raffi!’ ” says Laura, mimicking one of Jenny’s messages about her favorite videos. Mark and Laura didn’t have any success communicating with their daughter using the technique, but with Lisa’s hand on hers, Jenny could tell her parents that she was able to read, tell time, even that she loved them. Mark told his fellow teachers, “My daughter can do all this!”

The miracle lasted until Nov. 19, 1991. That week before Thanksgiving, the Storches received a call from the new school Jenny was attending. School officials said that Jenny, then 14, was showing people an account prepared by facilitated typing that accused her father of 200 vaginal and anal rapes. Even after a physical exam found no signs of abuse, even after Jenny’s apparent testimony was found to be rife with inconsistencies, even when the person who assisted Jenny’s typing was revealed to have had a troubling personal history, the county still pressed on with the abuse charges against Mark and neglect charges against Laura. Finally, after a 10-month legal odyssey costing tens of thousands of dollars, the case against them was dropped. Only now, more than a year after their ordeal began, can Mark and Laura Storch speak of what they’ve been through and allow themselves to bleed a little, again.

“I think the phone call was made on a Friday,” recalls Laura, thinking back to when they were first contacted by the Department of Social Services. “Monday, we were in court. They didn’t give us a chance to speak. The first thing the prosecuting attorney said is, ‘I’m going to take your child away.’ ”

“I’m going to take your daughter away,” Mark echoes, hollow. “I said to her, ‘Who are you?’ ”

LIKE DOZENS OF PARENTS AND TEACHERS ACROSS THE COUNTRY, THE Storches have seen both the promise and the devastation that can result from messages produced by an autistic child’s gently supported hand. Cases such as theirs have forced scientists to examine the implications of a process that seemed like it could do no harm--and raised sharp questions about the technique’s validity.

From Los Angeles to Oklahoma, Boston to suburban Illinois,thousands of autistic individuals are using FC, either typing with a single finger or pointing to letters on an alphabet grid called a letterboard. Moving stories of children unlocked from silence have appeared in newspapers and on television programs. Unreachable, retarded, withdrawn--that was the grim assessment of many autistic children, and these stories seem to defy it.

Deborah Mazelah, a Millbrook, N. Y., mother, tells of her autistic son, Christopher. Now 7, Christopher has done math problems and word drills on a computer since he was 4, and was briefly enrolled in a South Carolina school last year. One day, after a lapse in supervision, says Mazelah, he was found on the playground with “a hole the size of a quarter” in his leg. Teachers initially thought it had been a slide accident, she says, although he had immediately tapped out “dog bite” on the letterboard he uses.

Mazelah maintains that, after receiving stitches for his wounds, he was able to identify the dog at the local pound. “FC could have saved my son’s life,” she says. “If that dog had had rabies, my son would have been dead.” Christopher appears to have more skills than many autistic kids, but none of his skills allow him to communicate as well as facilitated communication. “FC,” says Mazelah simply, “changed our life.”

But now, after three initial years of such praise, people are making a disturbing discovery: In many cases FC may not work, may simply be a puppet show that makes these children vessels for other peoples’ thoughts and frustrations. Detractors liken it to the Ouija board, a game where spirits supposedly transmit messages through player’ hands.

The claims in cases such as the Storches’ are astounding. Parents of daughters with intact hymens have found themselves accused of hundreds of rapes. Children whose vocabulary consisted of one-syllable words type precise pornographic descriptions of sexual acts. In every case, the purported abuse has been sexual.

There are several possible explanations for that. Facilitated communication can be used to convey a wide range ideas and feelings, and teachers may see sexual topics as a red flag, something to be pursued. And children are sometimes misinterpreted, as in the case of a New York mother whose son seemed to have accused her of abuse but who was later shown to have been describing a sex-education film from school. And, sometimes, facilitators may be using these children for psychological role-playing, a safe way of revealing and discussing their own problems.

Though there has been at least one case in which a defendant has confessed to accusations of sexual abuse made using facilitated communication, there have been no convictions based on the technique. The typed words are usually the only evidence. And parents are usually threatened with their children’s removal, or must sit and watch as they are taken away.

But last September, the Storches set a precedent for parents fighting such allegations. They argued that facilitated communication had not been sufficiently tested or scientifically accepted to be presented as evidence in court--and they won. Since then there have been more hearings and more parental victories, but new allegations are constantly being made. The ongoing fight is vicious and nasty. Researchers accuse each other of bias and shortsightedness. Critics of the technique call the proponents zealots and brainwashers, citing seminars at which teachers of FC tell parents that “you have to believe”--belief, to them, being a component without which the method won’t work.

Says Bennett Leventhal, head of pediatric psychology at the University of Chicago, who testified in the Storches’ defense: “The obligation of an investigator into a new technique is to show that it works.” But researchers had not investigated FC strenuously before cases such as the Storches’ because, “With FC, there’s this basic assumption of ‘What can it hurt?’ The Storch trial,” he adds, “is living proof” of how dangerous it is to embrace new science before it has been tested.

AUTISM DIDN’T EVEN HAVE A NAME UNTIL 1943, AND THERE’S STILL BARELY a consensus on what it is. For decades, psychologists like Bruno Bettelheim maintained that it was a mental illness caused by cold, uncaring “refrigerator mothers.” But in the ‘60s, psychologist Bernard Rimland, head of the Autism Research Institute, challenged that assessment with research indicating that the cause is neurological. Researchers now believe that autistic children may have an excess of the neurotransmitter serotonin or an underdevelopment of the brain.

Parents and academics have tried almost everything to reach them: aversion therapy (in which children are pinched or made to smell sharp odors when they abuse themselves); sound therapy (in which they are exposed to gradually increasing levels of sound to ease an oversensitivity that some experts think makes autistic children withdraw); reinforcement therapy (in which they are given treats like gumdrops to reward learning). But none of those treatments will enable most children to lead lives approximating “normal” ones. Autistic savants like Dustin Hoffman’s character in “Rain Man” are rare, but diagnoses of autism are not: It is thought to occur in 1 out of every 2,500 births, which means there may be as many as 100,000 autistic Americans. Most will never live on their own.

As the Storches were struggling to teach their daughter simple skills, research was going on in Australia that would revolutionize the treatment of autism. In the mid-1980s, a teacher named Rosemary Crossley began pioneering assisted typing with autistic children. She had already had success with children with cerebral palsy who were once misdiagnosed as retarded. Crossley thought that autistic children, too, were often similarly misdiagnosed, in that motor disorders such as poor coordination made it difficult for them to type or write. So she began painstakingly to coax what appeared to be these children’s first words by placing her hand over theirs, then pulling back gently to prevent them from typing too sloppily or too fast.

Syracuse University professor Douglas Biklen was enthralled when he visited Crossley in 1988 and ’89. Parents, too, were thrilled when, in 1990, Biklen published his first paper on facilitated communication in the prestigious Harvard Educational Review. Even though the article contained only anecdotal stories of children using FC, and despite other academics’ calls for more stringent research, the method spread like lightning. By 1991, Biklen had established the Facilitated Communication Institute at Syracuse, a base from which he could go across the land and hold seminars for parents, aides and teachers. Groups like the Adriana Foundation, a Massachusetts institute founded by the mother of a child who uses the technique, began training sessions, too, their mantra--”You have to believe”--echoing to the present.

In three short years, facilitation has spread coast to coast, school to school, becoming a fixture in the lives of parents with children with autism, Down’s syndrome and other disorders. The stakes in facilitated communication are even higher than the fragile hopes of parents who have disabled children. For autistic Americans who rely on the care of others, a chance to communicate would mean increased autonomy and freedom. But false or misinterpreted messages could have devastating ramifications. If it is assumed that an autistic person is offering informed consent through facilitation, medical procedures could be performed (or withheld)--or the transfer of an inheritance approved.

THE CHILDREN’S ANNEX, THE PRIVATE SCHOOL FOR DISABLED CHILDREN in Upstate New York that Jenny attended, began using facilitated communication in 1991. After Lisa demonstrated it with Jenny, Laura tried it too, though, she says, “I didn’t get anything.” Still, she believed in the technique enough to use it with other people’s children as part of her job at the Annex. She doesn’t anymore. In the back of her mind, there was always something a little troubling about FC. “It was very difficult for me to know exactly whose hands were moving whose,” she says. “You’re told you always have to believe. And I wanted desperately to believe that Jenny was capable of doing this. As parents, we would like to believe anything.”

When it came time to take the painful step of offering Jenny broader horizons than they could show her at home, Laura’s quiet doubts made it easier for them to send Jenny to a school that didn’t offer facilitation. In April, 1991, Jenny was enrolled at the Devereux Foundation, a residential facility for autistic teens in nearby Red Hook.

But Lisa missed Jenny and visited her frequently at Devereux. Soon, she was bringing the Storches facilitated messages from their daughter, which Lisa obtained without the school’s permission, complaining about Devereux. Lisa also wrote her own messages, sending a long letter to school officials railing about the “injustice” of not using FC. Then, on Nov. 19, she facilitated the message from Jenny that her father had raped her hundreds of times.

It was only later that Mark and Laura would learn more about Lisa. They found a long poem in Jenny’s room at school, in what they’re sure is Lisa’s handwriting: “This is a poem for my friend whom I have loved more than I expected,” it reads, “Whose large brown eyes look at me sometimes with love and sometimes with anger / . . . white pale creamy skin, soft like silk / with soft rose cheeks.” Laura claims that Lisa told her she was sexually abused as a child.

(Lisa no longer teaches at the Children’s Annex and attempts to contact her were unsuccessful. For that reason, she is being identified in this article only by her first name.)

Pamela Joern, the Ulster County prosecutor, requested an “expert facilitation” of Jenny by a facilitator who was told only Jenny’s name, age and that this was a social services investigation. In the statement emerging from this session, which was videotaped, Jenny accused her father and grandfather of rape, and stated that “during my period, I bled all over the place.” Both of her grandfathers had been dead for at least five years, and Jenny had not begun menstruation.

THE NINE LONG MONTHS UNTIL the Storches got their day in court were a time of re-evaluation for some FC followers. Rimland, whose San Diego-based Autism Research Institute also publishes a newsletter, supported facilitated communication before it was popular enough to have that name. A 1988 column he wrote focused on the improved behavior of children taught to type, and in 1991, his article on “autistic crypto-savants” described a boy who apparently wrote in pencil when his teacher’s hand touched his; the story ended with a call for more research. But by early 1992, his column was somberly titled “Facilitated Communication: Now for the Bad News.” That news was the slew of sexual abuse allegations and court cases arising from FC.

In the Los Angeles area, a teacher’s aide faces a lifetime of stigma and suspicion because of facilitated allegations. Before his year-old case was abruptly dismissed last month, the aide, who has asked not to be identified, was accused of having lined up four mentally retarded Latino boys outside a school bathroom in Whittier, taking them inside one by one and molesting them. Now jobless and severely depressed, the aide argues that someone should have recognized that the case was weak from the outset. Among the lapses in the case, he says, was that the immigrant children were facilitated in English, not Spanish. Now he vows a $2-million lawsuit against the school system. “Even the allegations alone are enough to ruin my career,” he says, his voice cracking with emotion. “This is all I ever wanted to do.”

One Chicago law firm, Whitted & Kraning, had three clients accused of sexual abuse and fielded calls from others. One of its clients, a father who brought his family over from India, was forced to move after his autistic daughter facilitated that he had raped her. After no evidence was found, the charges were dropped--but the child’s school refused to stop facilitation. Rather than risk another accusation, the family moved across state lines. As in the Los Angeles case, the family could not speak fluent English, making it unlikely that the girl could have typed the grammatically and sexually precise accusations.

Like other targets of these allegations, the Storches soon discovered that they were in strange legal waters. Family court, where the Storches’ case was assigned, has a lower burden of proof standard than criminal court. Accused abusers are not exactly innocent until proven guilty, largely because the interests of the child are held to outweigh the rules of due process. During the entire ordeal, say Mark and Laura, they were never given a chance to tell their side of the story, a charge the prosecutor doesn’t deny.

A court-ordered physical exam found no evidence of sexual abuse--this despite the 200 rapes that allegedly occurred. Still, Mark had to be monitored when he was with Jenny: first by their 24-year-old son, Craig, then by Laura’s mother and finally by Laura herself, even though she had been charged for not reporting the abuse.

“Jenny was affected,” says Laura of the family’s anxiety. “She stopped eating. She lost a lot of weight. For Mark and me, our marriage suffered because of this.”

Most FC cases had been dropped before any formal court hearing took place. But the Storches went to court with a powerful legal tool: a type of hearing designed to evaluate the reliability of evidence gleaned by new technologies. The hearings came into being after a 1923 court ruling, Frye vs. United States, judged lie detector tests unreliable and inadmissible. With the advice of Alan Zwiebel, their Kingston, N. Y., attorney, the Storches were out to hold facilitated communication to the same strict standard--and they were hoping for the same result.

Zwiebel has fashioned himself into a slick, lawyerly version of the Lone Ranger, with a well-groomed mane and penchant for black shirts and cowboy boots. He leans back in his office chair, relating how many advocates of facilitated communication spoke out against his strategy. “The head of one school told me I should argue that FC worked, but that this case was wrong,” he says, pausing for emphasis. “I said, ‘Uh-uh!’ ”

During the hearing, the prosecution called eight witnesses; the defense, three. One prosecution witness contended that FC is simply translation, just like a speaking person’s interpretation of sign language. Another promptly contradicted that argument. A third admitted that the technique is not generally accepted by the scientific community, a crucial criterion for winning in a Frye hearing. Defense witnesses, on the other hand, admitted that FC might work in some cases. But they vigorously denied that the technique had been sufficiently validated, understood or accepted to be presentable in court.

There was one noticeable absence on the roster of expert witnesses. “The biggest problem is getting expert testimony from Biklen,” says Rick Trunfio, a prosecutor in the Syracuse district attorney’s office. “Even he concedes that there’s not enough data on it to give us something to rely on as far as the Frye test.”

On Sept. 15, 1992, the Storches got their decision. Judge Karen Peters began with lines from a poem by Ogden Nash: “There is a knocking in the skull / An endless silent shout / Of something beating on a wall / And crying, Let me out.” And she ended with an admonition to facilitation’s experts. “If, in reality, Jenny is speaking, she deserves to be heard. Regrettably, the proponents of this technique have failed to conduct the necessary studies to ensure the reliability and validity of this communication technique. . . . This court implores those individuals . . . to do so.”

Autistic children are often misunderstood, or not understood at all. Like any child, a disabled child may lie. But unlike the others, these autistic students cannot speak for themselves. And sometimes, as seems to be true of Jenny Storch, they become mere instruments for writing out other people’s frustrations.

UNTIL FACILITATION IS proved, disproved or understood, the devastating costs to parents like the Storches will continue to mount. Mark and Laura took out a second mortgage to cover their legal bills, some still unpaid. And they’ve paid another, deeper, price.

The battle for Jenny “destroyed us,” says Laura two months after the court decision that cleared her and her husband. “To this day I’m afraid to answer the phone, get my mail,” Mark says softly. “We won,” he adds, his voice tinged with irony, “but we lost by what’s been done to us.”

Researchers only now are beginning to do rigorous studies of facilitated communication. One report, from the O. D. Heck Developmental Center, a residence for mentally disabled adults in Schenectady, N. Y., will be published this spring. Douglas Wheeler, clinical coordinator of the center’s autism program, searches for words to describe what he and his staff have undergone. “We believed,” he says, “and now we’re emotionally devastated.”

The Heck Center’s journey with FC began in the fall of 1991, when three staff members eagerly attended one of Syracuse University’s two-day training sessions. By 1992, 25 autistic residents and 21 staff members were actively facilitating, producing words, sentences, even full conversations. Flushed with this apparent success, the Heck Center teamed up with a state agency, picked 12 of their best students and nine of their best facilitators and embarked on a test of their own design. “(The researchers’) original stated purpose . . . was to validate facilitated communications,” the report’s introduction reads. “They hoped to quell the skepticism of their peers.”

That didn’t happen. In the experiment, a facilitator and student sat side by side, with hands interlocked, at one end of a table; a researcher sat at the other. A high, T-shaped divider running the length of the table allowed the researcher to show simple pictures (of a pencil, for example) to either subject without the other seeing. Every time the researcher showed a picture, the pair was asked to type the word for the object shown.

The results were clear: Out of the 120 times an autistic subject was shown a picture that the facilitator did not see, there were no completely correct answers and two ambiguities (like “food” for a picture of bread). Out of another 60 times that the facilitator saw a picture different from the one shown the student, the two interlocked hands typed the facilitator’s answer 12 times; the rest of the responses were completely incorrect or gibberish. Another 60 attempts produced the only correct answers, this time when the facilitator and student were both shown the same card. Even then, only 14 were correct.

The results don’t prove conclusively that FC doesn’t work. But, as Wheeler says, the tests prove that what the facilitators see and think influences what is typed. The staff is still coping with its disillusionment. “The parents pretty much accepted the results. They accepted it much better than the staff did,” Wheeler says. “These parents have already been through all the miracle cures. This was just another in a long line of disappointments.”

Facilitated communication is still widely practiced. Schools, public and private, use the technique. Parents continue to act on the wishes that their children appear to type out. There’s not so much a healthy skepticism about the technique as a split between those who deny it works at all and those who believe it works unequivocally. And this friction is hurting the search for new information. At an annual conference on child adolescent psychiatry, the seminar on FC was closed to non-academics--a rare occurrence. They were “afraid of the impact of believers,” one researcher says.

Believers still abound. Crossley, who invented the technique, says the Heck Center study is flawed. Biklen, of Syracuse, agrees, saying the children were doomed to fail in such high-pressure situations. And Biklen says his research has shown the validity and promise of facilitated communication. But the compelling testimonials come from the parents.

Even Laura Storch, who saw her family pulled apart by FC, has a positive story to tell. Although she doesn’t believe that the method works for most children, she does know of one former student at the Children’s Annex who has found new independence. “He started out with full hand support, and now he types alone,” she says. The boy, who cannot speak, now takes classes with typical students, says Laura. “It’s wonderful,” she says wistfully. “That’s what every parent wants.”