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On its face, FC can seem simple and benign, and sometimes looks quite convincing. Its main proponents sometimes characterize FC simply as a strategy for teaching individuals to point in order to access systems like synthetic speech devices and keyboards to augment their communication. At the same time, however, they claim that it is a revolutionary means of unlocking highly developed literacy, numeracy, and communication repertoires in large numbers of individuals previously thought to have severe learning difficulties. For all the world it looks like a mental miracle, the kind of stuff they make movies about, as in "Awakenings."
The theory is that many such individuals do not have cognitive deficits at all, but instead have a presumed neuromotor impairment that prevents them from initiating and controlling vocal expression. Their average or even above average intelligence is locked away, awaiting release. The neuromotor disorder is also presumed to manifest itself in "hand function impairments" that make it necessary for someone else to stabilize the individual's hand and arm for pointing, and to pull the pointing hand back between selections to minimize impulsive or poorly planned responding. Candidates for FC are also presumed to lack confidence in their abilities, and so require the special touch and emotional support of a facilitator to communicate, (i.e., a strap or device to hold the person's arm steady will not work).
FC thus has an almost irresistible appeal for parents, teachers, and other caring persons who struggle mightily to understand and communicate with individuals who often do not respond or communicated in return. But the very features that make FC so seductive, in combination with some other potent factors, have made it a topic of heated debate between believers and skeptics since its "discovery" in Australia nearly two decades ago.
Right away there was controversy about the technique that Crossley called Facilitated Communication Training. Two people were involved in creating the messages, and simple observation could not reveal how much each was contributing. Plus, many of the messages Crossley attributed to these institutionalized individuals defied plausibility. "Facilitated" accusations of abuse and expressions of wishes for major life changes (like leaving the institution) made it imperative to determine whether communications actually originated with the disabled individual or the facilitator. Matters were complicated by Crossley's emerging status as a heroine to many in the deinstitutionalization movement. Eventually, after a series of legal proceedings, a young woman with cerebral palsy with whom Crossley had developed a special relationship through FC was released from the institution to reside with Crossley. The institution was closed, and in 1986 Crossley started (with government financial support) the DEAL Centre (Dignity through Education and Language) to promote alternative communication approaches--principally FC--for individuals with severe communication impairments. Use of the method spread to programs in Victoria serving persons with various disabilities, accompanied by controversies about communications attributed to FC users on the basis of subjective reports.
Sufficiently serious issues arose to provoke formal statements of concern from professionals and parents in 1988, and a government-sponsored investigation in 1989. Despite Crossley's resistance to objective testing (on the basis that FC users refused to cooperate when their competence was questioned), some small-scale controlled evaluations were conducted in the course of that investigation. When the facilitator's knowledge about expected messages was well-controlled (more on this later), and the accuracy of messages was evaluated objectively, the effect disappeared. The disabled individuals were unable to communicate beyond their normal expectation. Instead, it appeared that the facilitators were authoring most FC messages, apparently without their awareness. These early studies suggested that FC was susceptible to a somewhat unusual kind of abuse: Allowing others to impose their own wishes, fears, hopes, and agendas on nonspeaking individuals.
This was in sharp contrast with the well-documented difficulties in social, play, cognitive, and communication skills that constitute current diagnostic criteria for autism (not to mention that the diagnosis is difficult to make and is applied to individuals with a wide range of competencies and deficits in all those domains). In his seminal article, Biklen mentioned the controversy over the Australian findings, but asserted that informal "indicators that communication was the person's own were strong enough, in my view, to justify the continuing assumption of its validity" [italics added].
Some of the indicators he reported observing were disabled individuals typing independently or with minimal physical contact with the facilitator; content (spelling errors, unexpected word usage, etc.) that appeared to be unique to each individual; and facial expressions or other signs that the individual understood the communication. He also noted that facilitators often could not tell who was doing the spelling and that they could be influencing the FC in subtle ways without their awareness, and that this could be a problem. Finally, on the basis of his uncontrolled observations and the reports of Crossley and other facilitators, Biklen decided that autism had to be redefined as a problem not of cognition or affect, but of voluntary motor control. He returned from Australia to establish the Facilitated Communication Institute (FCI) at Syracuse University, and the North American FC movement was underway.
Soon after publication of Biklen's article, special education personnel and parents around Syracuse, then throughout the U.S. and Canada, adopted FC enthusiastically. Scores of children were placed in regular classrooms doing grade-level academic work with "facilitation." Decisions about the lives of adults with severe disabilities--living arrangements, medical and other treatments, use of hearing aids, and so on--were based on "facilitated" messages without any attempt to verify authorship objectively. In many cases FC supplanted other communication modes, including vocal speech and augmentative communication systems, that do not require another person for message creation. Some psychologists, speech pathologists, and others began giving I.Q. and other standardized tests with "facilitation," changing diagnoses and program recommendations in accordance with the "facilitated" results. Suddenly "retarded" individuals were proclaimed to have average or above-average intelligence. "Facilitated" counseling and psychotherapy were promoted to help FC users deal with personal problems. Colleges and universities offered courses on FC. Millions of tax dollars were invested in promoting its widespread adoption, with little objective evaluation of its validity or efficacy.
Facilitators were also imbued, explicitly and implicitly, with a strong ideology that presents dilemmas for many who want to know who is really communicating in FC. Some components of the ideology include:
Concurrently Biklen, Crossley, and their colleagues published further reports of qualitative studies suggesting that FC was highly effective in eliciting unexpected literacy skills from large proportions of individuals with severe autism, mental retardation, and other disorders. Many of these individuals had received little instruction in reading and spelling, or if instruction had been attempted many had not appeared to learn very much. How, then, had they developed age-level or even precocious literacy skills? According to Biklen they acquired these skills from watching television, seeing their siblings do homework, and simply being exposed to words pervading the environment. Or perhaps some had actually been learning from instruction all along, but because their speech was limited they could not demonstrate what they learned.
How did they verify their claims? Biklen and his colleagues used participant observation and other methods employed by anthropologists, sociologists, and educators in field studies of cultures and social systems. The research was strictly descriptive, not experimental, and employed no objective measurement or procedures to minimize observer bias. Despite their acknowledgement of the real possibility of facilitator influence in FC, these studies did not control that critical variable.
Late in 1991 a few parents of students at the New England Center for Autism, where I serve as Director of Research, began pressing our program to adopt FC. They asked us to make rather drastic changes in their childrens' lives on the assumption that messages produced with FC represented the childrens' true wishes and competencies. Some were angry when we decided instead to use it only under conditions of a small-scale experimental study employing the kind of objective evaluation methods that we try to apply to all techniques. At that time we could find nothing about FC in the research literature, so we consulted respected colleagues around the country. Some (in California, surprisingly enough) had not heard of it yet. Others invoked a Ouija board analogy or Clever Hans effect, and suggested that FC would be a short-lived fad. None knew of any objective evidence about FC. To our chagrin, we also encountered individuals with scientific training who were promoting the use of FC without considering the fundamental question about authorship.
So many social movements have a sexual component in them, and FC is not different. Production of sex abuse allegations usually set in motion an inexorable chain of events. Beliefs about FC, the complexities inherent in the method, and the fact that the alleged victim may be seen as particularly vulnerable because he or she is disabled, now began to interact with the zealous pursuit that seems to typify investigations of sex abuse allegations. School or program administrators were notified, who in turn called in representatives of social services and law enforcement agencies. If the accused was a family member with whom the FC user resided, that person was either required to leave the home or the FC user was placed in foster care. If a parent was accused, both parents often faced criminal charges, one for perpetrating the alleged abuse, the other for knowing about it and failing to act. Often actions were initiated by social service workers to terminate parental custody or guardianship. If the accused was a school or program employee, they may have been suspended from their job or even fired. A long and trying ordeal was virtually guaranteed for all involved. An investigation began. Police interrogated the accused, and questioned the alleged victim through their facilitator. Other evidence was sought in the results of medical and psychological examinations of the alleged victim, and interviews with others who may have had information about the alleged events. A presumably independent facilitator was sometimes called in to try to corroborate the allegation, introducing another complexity: There appear to be no established safeguards or objective criteria for ensuring that independent facilitators in fact have no access to information about cases, nor for deciding what constitutes corroborating "facilitated" content.
False allegations have devastating emotional and financial effects on the accused and their families, but leaving individuals in situations in which they may be abused jeopardizes their physical and emotional welfare. It would seem that extreme caution and stringent rules of evidence should apply. A number of cases have arisen in which the only evidence was a "facilitated" allegation, although there have also been reports of cases in which corroborating evidence or confessions were obtained. When an allegation is made through FC, two separate but related questions must be addressed: Who made the allegation, and did the alleged events actually occur? Some courts and investigative bodies in Australia, the U.S., and Canada have decided that the first question must be answered by controlled testing of FC under conditions where independent observers can verify when the facilitator does and does not have information necessary to produce communications. If the FC user does not convey information accurately and reliably under those conditions, and there is no other solid evidence, the legal action is usually terminated. That has been the outcome of testing in every case of which I am aware, but by the time that determination has been made the accused have been traumatized for the better part of a year and have spent tens of thousands of dollars defending themselves. Solid corroborating evidence would certainly answer the second question--whether abuse occurred--but it does not follow logically that it answers the question about who authored the "facilitated" allegation.
Unfortunately, it wasn't until a number of false "facilitated" allegations of sexual abuse came to light that FC began to be scrutinized closely. As issues about the validity and reliability of FC were addressed in courtrooms all over the U.S., critical and questioning stories appeared in the print and electronic media. Concurrently (though somewhat slowly), results from a rapidly growing number of controlled evaluations began to be disseminated, and a few more skeptical voices were raised.
How do you do a controlled study of FC? Recently I analyzed reports of 17 evaluations of FC that have appeared or have been accepted for publication in peer-reviewed professional journals, and eight presented at scientific conferences. The common and critical ingredients were:
None of these controlled evaluations produced compelling evidence that FC enabled individuals with disabilities to demonstrate unexpected literacy and communication skills, free of the facilitator's influence. Many messages were produced over numerous trials and sessions, but the vast majority were accurate and appropriate to context only when the facilitator knew what was to be produced. The strong inference is that facilitators authored most messages, although most reported that they were unaware of doing so. Sixteen evaluations found no evidence whatsoever of valid productions. A total of 23 individuals with various disabilities in nine different evaluations made accurate responses on some occasions when their facilitators did not know the answers, but most of those productions were commensurate with or less advanced than the individuals' documented skills without FC. That is, they were primarily single words and an occasional short phrase, produced on some trials by individuals whose vocal or signed communication exceeded that level, some of whom had documented reading skills before they were introduced to FC. For most of these individuals, there was clear evidence that on many other trials their facilitators controlled the productions. The controlled evaluations also demonstrated that most facilitators simply could not tell when and how much they were cueing their partners, emphasizing the importance of systematic, controlled observations for identifying the source of "facilitated" messages. The legal, ethical, and practical implications of these findings are obvious and serious. Together with the legal cases and critical media reports, they have made it a little more acceptable to voice skepticism about FC.
Additionally, many evaluations took place in familiar surroundings in which individuals had engaged in FC for numerous sessions, with their regular facilitators and letter displays. Sessions typically were not conducted or were terminated if there were any signs of distress or unwillingness to continue. Few refusals were reported. Participants in most evaluations completed numerous trials and sessions over extended periods of time. Most appeared cooperative, even enthusiastic, throughout. Several evaluations were conducted in the context of typical FC sessions, using the same types of materials and questions to which participants had appeared to respond successfully. Questions were no more confrontational or intrusive (perhaps less so) than those often asked in regular FC sessions; in fact, many tasks were identical to those recommended for FC training, except that conditions were arranged so that facilitators could not know all the expected responses. Finally, if FC users simply become too anxious to communicate when challenged, one has to wonder how they are managing to perform in regular academic classrooms, on I.Q. and other tests, in front of TV cameras, and before large audiences at FC meetings. And how can they give "facilitated" testimony, under questioning by judges and attorneys (which is anxiety producing for anyone), as prosecutors in some sexual abuse allegation cases are now arguing is their right?
Another criticism of the controlled evaluations is that the facilitators were not familiar with their partners, were inadequately trained, or did not provide appropriate "facilitation." That is simply not true. As indicated in the summary above, the FC users' preferred facilitators participated with them in most evaluations. The only exceptions were two studies that assessed initial responsiveness to FC with facilitators and FC users who were "beginners" when the evaluation started, and a couple of legal cases in which unfamiliar facilitators were involved (who nonetheless "facilitated" successfully with the FC users before controlled testing began). Many facilitators were trained by leading proponents of FC. Most were encouraged to provide whatever physical and emotional support they wished during the evaluation. If they were not "facilitating" properly, few understandable communications would have been produced. Quite the opposite was true. There is a peculiar irony in this criticism, however, since proponents offer no specific guidelines or standards as to what constitutes sufficient training and experience for facilitators. Some facilitators have started using the method after reading an article, watching a videotape, or attending a brief workshop. When we began to take a look at FC at the New England Center for Autism, for example, our three speech-language pathologists were trained by Biklen in a two-day workshop. That appeared to be the norm at that time (late 1991). A further contradiction is that there are reports throughout the descriptive literature on FC that facilitators who were complete strangers had some individuals with severe disabilities "facilitating" sentences (more, in some cases) in their very first session.
Some FC proponents attribute negative findings to the supposition that most FC users are not experienced with the kinds of tasks presented to them in the controlled tests. This criticism is especially puzzling. By law, the skills of individuals with special needs must be evaluated on a regular basis, so most FC users have probably had a great deal of test experience. The tasks used in most controlled evaluations were like those used to teach and test academic and language skills in classrooms and training programs everywhere. In fact, many were precisely the kinds of activities that are recommended for FC training, on which the FC users in the controlled evaluations had been reported to perform very well. Again, if inexperience with the tasks were a plausible explanation, FC users should perform equally poorly when their facilitators did and did not know the expected answers. That was not the case in the controlled evaluations.
Finally, FC proponents are inconsistent in claiming that controlled testing undermines the FC user's confidence, while in the next breath they are quick to tout reports that some attempts at controlled evaluations have produced evidence of FC's validity. In other words, when the data contradict their claims, experiments are not valid; when the data support their claims, experiments are useful. A report from Australia (referred to as the IDRP report) said that three individuals with disabilities succeeded in "facilitating" the name of a gift they were given in the absence of their facilitators, but one was said to type his responses independently, without FC. The report provided no background information about the individuals, no details about the procedures, and described only one controlled trial completed by each individual. Another exercise described in a letter to the editor of a speech disorders journal claimed that four of five students thought to have severe language delays performed remarkably better with FC than without on a test of matching pictures to spoken words. The facilitator wore headphones but was not screened visually from the nearby examiner who was speaking the words, and no expressive communication was required of the FC users. At best, these exercises must be considered inconclusive, but they have been cited widely by proponents as scientific validations of FC. The contradiction inherent in arguing that controlled testing interferes with FC while endorsing exercises like these seems lost on them. The clear implication is that tests that appear to produce evidence supporting beliefs about FC are good, and tests that fail to do so are bad.
At the same time, however, we sensed something ominous in the rapidity and zeal with which FC was being applied, the resistance to critical scrutiny, and the antiscience stance of many adherents. Even as the dark side of the FC story began to unfold, relatively few in developmental disabilities who knew how to test the claims about FC experimentally wanted to get involved, perhaps thinking that the best response was to continue to do sound research in their own areas. Others did not to want to be seen as naysayers or debunkers.
Cummins and Prior, both with long histories of involvement in treatment and research in developmental disabilities, were among the first in Victoria to go public with their concerns about FC. Their expressions of skepticism and calls for caution were met with hostility and personal attacks from FC proponents in Australia, a scenario that has repeated itself in the U.S. That suggests another variable, in my opinion one of the most potent: It was (is) not Politically Correct in many circles to suggest that FC might not be all it appears, or even to call for objective evaluation to determine if it is. Those who do are likely to be labelled heretics, oppressors of the disabled, inhumane, negative, jealous of others' discoveries, "dinosaurs" who cannot accept new ideas, and out for financial gain.
The public position of Syracuse University officials appears to be that Professor Biklen's notions are simply provoking the furor and resistance that all radical new ideas encounter. Perhaps that is the case; time and objective data will tell. Time will most certainly be required for the legal system to do its part in determining the future of the FC movement. A number of cases involving "facilitated" sexual abuse allegations are in process at this writing. To my knowledge, there has been one conviction so far. Several individuals and families who have been cleared of false allegations have filed damage countersuits against the facilitators, school and program administrators, and social service agencies involved. On January 10, 1994 a civil suit was filed in federal District Court for the northern district of New York seeking $10 million in damages on behalf of a family who were among the first victims of FC allegations in the U.S. Among the ten defendants are Douglas Biklen and Syracuse University.
Finally, if FC is not a mental miracle, is it sleight of hand? By this I do not mean there is intentional deceit on the part of the facilitators. Far from it. Most are genuine, honest, caring individuals who wish the best for their charges. Herein lies an explanation. The power of a belief system to direct thought and action is overwhelming. A full and complete explanation for the FC phenomenon is still forthcoming, but clearly there are parallels with the ideomotor responses that direct dowsing sticks and the Ouija board. As the facilitator gently directs the hand to begin typing, letters are formed into words and words into sentences. Just as with the Ouija board where elaborate thoughts seem to be generated out of thin air while both parties consciously try not to move the piece across the board, the facilitators do not appear to be conscious that it is them generating the communication. Even with the autistic child looking elsewhere, or not looking at all (eyes closed), the hand is still rapidly pecking out letters as if it were a miracle. Unfortunately there are no miracles in mental health. All of us wish FC were true, but the facts simply do not allow scientists and critical thinkers to replace knowledge with wish.