Whose Voice Is It, Anyway?
Some critics question whether 'facilitated communication' really allows autistic children to express their own thoughts
Two years ago, Mark Storch's life came apart. That was when his autistic teenage daughter, typing while an aid supported her hand, spelled out horrendous accusations against him. In graphic language, she accused Storch of raping her more than 200 times.
The case landed in a New York state family court, where the charges against Storch, a teacher from Shokan, N.Y., were eventually dismissed.
The controversy, however, has not ended. Now Storch is planning to bring suit against the Ulster County social services agency and the facilitator who supported the sexual abuse charges against him. Storch contends that facilitated communication—the method by which his daughter made her accusations—has never been proved conclusively to work and that county officials and others should have known that when they brought charges against him.
The Storch family's story is among an increasing number of cases nationwide in which nonverbal children, “speaking” through a facilitator, have accused a parent or someone else close to them of sexual abuse. No one knows how many such cases have occurred, since these allegations are typically adjudicated in family courts, where records are sealed. But at least 22 such cases have come to public attention since 1990, according to the Center for Facilitated Communication at Syracuse University.
The cases, compounded by a growing number of clinical studies that challenge the efficacy of facilitated communication, are renewing doubts about whether the nonverbal and autistic children who use the technique are expressing their own thoughts or communicating the unconscious thoughts of the facilitators who work with them. “Emotionally, as parents, you want more than anything to believe that facilitated communication is for real, but they haven't proven anything yet,” Storch says. In the meantime, he has made up his own mind about the technique. “I think it's a complete sham,” he declares.
Used widely in Australia, facilitated communication was imported to this country a few years ago by Douglas Biklen, a professor of special education at Syracuse University. [See “Breaking The Silence,” August 1992.] On a visit to Australia, Biklen observed that autistic children and others who had no speech were able to type or point to letters on a letter board when a facilitator gently touched or supported them on the hand, elbow, or shoulder.
The practice spread quickly, particularly for children with autism, who have difficulty communicating with speech. Parents and educators who used the technique said children were able to tell them things the adults had had no way of knowing previously. According to the Syracuse center, about a dozen students have learned to type independently of a facilitator.
Along with the rise in the use of the technique have come the abuse allegations. Six of those charges have resulted in convictions or guilty pleas, although most have not held up in court. One survey showed that 13 percent of students using facilitated communication had made such charges—a level that is not out of line with the percentage of respondents in surveys of the general population who say they have experienced sexual abuse. Even so, the rise in cases prompted the Syracuse center to draw up guidelines this year to help facilitators determine when an accusation is real.
Storch's case was among the first to emerge. In 1991, his daughter Jenny, who was then 14 and living at a residential school, began to type such messages as, “Daddy f——d me in the ass.” In response, county social service officials sought to remove her from her father's custody and to press charges against him. Storch was allowed to see his daughter only under supervision approved by the court. “I kept thinking, Once we explain who we are this will go away,” he says. “I don't abuse my own daughter. I don't abuse anybody.”
To his dismay, however, officials continued to press the case even after a physical examination of his daughter showed no signs of abuse. Moreover, Jenny, typing with a different facilitator, also went on to accuse her grandfathers—both of whom had been dead for years—of similar acts.
Holding facilitated communication to the same strict legal standards as a polygraph test, Family Court Judge Karen Peters decided not to allow Jenny's facilitated messages as evidence in the trial. All charges against Storch were dropped in September 1992—10 months after the allegations surfaced.
The entire ordeal cost Storch more than $100,000 in legal fees and has strained his 26-year marriage. “I'm still a nervous wreck whenever I hear anything about facilitated communication,” he says.
Alan Zwiebel, the lawyer representing Storch and other parents who claim to have been wrongfully accused of child abuse in much the same way, says Storch's case was typical. Zwiebel blames Biklen and other supporters of facilitated communication for promoting its widespread use without first proving that it works or investigating its consequences. “If this was a medication for cancer,” Zwiebel says, “we would check it out before we allowed it to be sold.”
But Biklen argues that educators and parents experimenting with facilitated communication should postpone scientific tests of its effectiveness. “What we've said is that if you're teaching them the method, it's best not to be testing them,” he says. “You don't test reading ability two weeks after teaching them to read.”
Studies by other researchers have so far turned up very little evidence that facilitated communication works. To date, there have been 38 published studies on the method, according to Bernard Rimland, director of the Autism Research Institute. Of the 304 nonverbal students participating in the experiments, he says, 11 showed signs of being able to communicate through facilitated communication.
Many of those studies suggest that facilitators may have unwittingly influenced students' responses. In some of the experiments, for example, students were shown an object and then asked to tell what they had seen. When the facilitator and the subject saw the same object, the student gave the correct answer. But when the facilitator was shown an object different from the one shown to the subject, the student spelled out what the facilitator had seen.
Arthur Schawlow, a winner of the Nobel Prize in Physics and the father of an autistic man who uses facilitated communication, counters that most of the critical studies were flawed. “You have to make sure what you're asking is something the student can give,” Schawlow says. “Not everyone can name things, especially under stress.” Four as-yet unpublished studies, he adds, produced more positive results by allowing subjects to rehearse their tasks and by barring any distractions to the facilitators, such as showing them different pictures.
According to Biklen, facilitators also must develop a trusting relationship with their subjects.
Newer studies have begun to address the proponents' criticisms. Michael Eberlin and his colleagues at the Developmental Disabilities Institute, for example, tested subjects only after they had developed relationships with their facilitators. Rather than simply asking the subjects to name things, the researchers also asked students how they felt or about their autism. The facilitators wore headphones that transmitted white noise to prevent them from hearing the questions.
Even so, none of the 21 students in the study showed unexpected communications skills. “We were hoping to show, using controlled research, that this was a wonderful thing,” says Eberlin, supervisor of the psychology department at the institute. “I hope there are some very excellent facilitators out there who know how not to influence and may be able to work successfully with a very small percentage of the population. But I'm not so sure.” Eberlin's study was one of four critical reports on facilitated communication published in the September issue of The Journal of Autism and Developmental Disorders.
The mounting criticism has prompted Biklen to design his own studies, which have not yet been completed. Until then, supporters of facilitated communication contend they already have all the proof they need. Schawlow, for example, recalls how his son once came to him to report, correctly, that a sink was overflowing in another room.
“I think part of the trouble,” he says, “is that those of us who practice this see anecdotes that don't impress the statisticians but are so compelling we don't need further validation.”
Vol. 05, Issue 04, Pages 14-15