DEAL-Facilitated _Communication

The PBS program Frontline: Prisoners of Silence did a hatchet job on facilitated communication training (FCT) in 1993 (the program was also repeated in 1994 and 1996). The program has unquestionably done immense damage to FCT's acceptance as a legitimate technique for assisting people with severe communication impairment (SCI), and has thus caused great harm to many people with SCI.

Very probably, you think that's absolutely right and proper. If you've seen the program, you'll be coming to this page with a strong predisposition in its favour, and a general belief that anyone trying to defend such obviously unscientific nonsense as FCT is inherently unreliable. OK, that's fine. I accept that I have to prove anything 110% even to introduce a moments's doubt into your mind. I think I can do that. You're not going to take my word for anything you can't check yourself. I have no problem with that. You think that I'm biased (yes, I am) and that Jon Palfreman, the director, and the Frontline team are unbiased (and there we may have a problem).

Bias

Two people with professional qualifications spoke on that program. One, Howard Shane, had (perfectly good) qualifications in speech pathology, and these were listed on-screen. One, Arthur Schawlow, had a Nobel Prize for Physics, seven honorary doctorates, and a Presidential Medal for Science, and that wasn't mentioned at all.

You might, as a class exercise, try to come up with any reason other than that Shane attacked FCT and Schawlow supported it. What other reason could there be? Because the Nobel Prize wasn't relevant? Well, if a program uses the word 'unscientific' about a technique it might be thought relevant - even interesting - to find out what scientists, and particularly great scientists, think of that. Actually, Schawlow thinks that Palfreman and Shane have an excessively simple-minded view of science; he says, among other things, that

You doubtless want to check whether I've quoted Professor Schawlow correctly, so his comments on the program are included below.

Science

Ah, but you can't argue with science, can you? They did the experiments, and the experiments showed that FCT didn't work, that it was all an illusion. They even showed it on-screen! Rosemary Crossley seemed to be helping a person with disability point to letters on a board, but the Frontline people drew a line across the top of the board and showed that the board moved away from the line - that the disabled person wasn't moving the pointer to the letters, the facilitator was moving the letters to the pointer. Irrefutable proof! On-screen!

It's rare that you can actually show on-screen that someone's a liar and a cheat. Normally there's a lot of to-ing and fro-ing involved, and all sorts of questions as to who you believe. Palfreman is a liar and a cheat, and if you have a video of the program you, too, can prove it. On-screen. In class.

Frontline drew a line across the top of the communication board. Get a felt-tip and draw a line around the thumb that's holding the board. Play the tape. The thumb doesn't move. The bottom of the board doesn't move. The top of the board apparently does. What's happening? Has the board moved? Is the board shrinking?

What's happening is that you've forgotten that the TV screen is two-dimensional. If a board is held vertically in front of a camera, it shows as a square. If you tilt the top away from the camera but hold the bottom still, the top of the board will seem to drop. It's complicated to describe, and it's bloody difficult to draw clearly in two dimensions, but it's easy enough to demonstrate; pick a piece of paper off your desk, hold it up till the top's just level with the windowframe, and tilt it back. Hey presto. It's called perspective, and we've known about it since the Italian Renaissance in the fifteenth century. Palfreman knows about it. It didn't suit him to tell you. Crossley wasn't moving the board down, the man's pointer was pushing the board back.

I've just covered two points where Frontline's bias and distortion can be absolutely demonstrated without argument, just to get you to the point where you might believe that there's a genuine issue here rather than a simple con trick. There is, of course, a lot more. Most importantly, there's now a lot more research into FCT, rigorous, 'scientific', published in refereed journals, that has found valid communication where a lot of previous studies didn't. My interpretation is that the previous studies weren't doing it right, but that doesn't have to be your reaction. You can read the articles and work it out for yourself. It just can't be said, though, (well, it can be said - Frontline said it; it just can't honestly be said) that there isn't any scientific evidence supporting FCT: there is. The debate is back where a scientific/clinical argument ought to be, evidence and interpretation versus evidence and interpretation, rather than just being an attempt to king-hit one side out of the argument before it starts.

What the scientists think of the program

Is Facilitated Communication Real?

Arthur L. Schawlow

Many children and adults with autism or related disabilities are not able to talk or write. They are able only to use broad gestures, and are able to communicate almost nothing about their feelings and desires. When coupled with bizarre repetitive gestures, they often appear to be incapable of serious thoughts or emotions. Yet in the past few years, a simple technique called facilitated communication has provided a way for them to type words, phrases and sentences on a keyboard. To make this possible, another person known as the facilitator starts by holding the hand of the person communicating and steadying it while the non-verbal person's finger types on a keyboard or points to a letter on an alphabet chart. It is thought that this procedure helps to control involuntary muscle tremors and overcomes the apraxic difficulty in initiating desired actions. In some cases it has been possible to reduce support by moving it from the hand to the wrist, then later to the elbow, or even just touching the shoulder. A few have even advanced from no communication to entirely independent typing.

Although this method has been found independently in several places over the last twenty years, including by my late wife Aurelia and myself, it became widely known only during the last few years, mainly through the work of Rosemary Crossley in Australia, Douglas Biklen at the University of Syracuse and Carol Berger of Eugene, Oregon. Many people are using it now, and the results have often been spectacular. To give just one instance, David Eastham in Canada wrote a book of poetry which was published and translated into French. He graduated from junior college before his untimely death, and Margaret Eastham has detailed his accomplishments in the biography Silent Words.

Facilitated communication is permitting many non-verbal people to express for the first time the emotional anguish of their prolonged isolation.

Moreover, they can tell about physical suffering and ask for help. In Los Angeles recently, a non-verbal young man was awake all night and complained of a severe toothache in a particular place. He is so afraid of dentistry that he can only be examined under complete anaesthesia, not a trivial procedure. His father is himself a dentist, and so arranged for another dentist to make this examination and the tooth was found to be cracked.

In Eugene, Oregon a young woman used facilitated communication to complain of a bad toothache. Two dentists, perhaps afraid of her autisticlike gestures, made only cursory looks and found nothing. She continued to complain and, after several more months, her parents found a dentist seventy miles away who was accustomed to working with people who have developmental disabilities. He made a careful examination and found that the tooth she had complained about was so badly abscessed that it had to be removed. How much have our non-verbal people suffered because they could not tell about their pain?

Many parents and teachers have seen similar dramatic results and do not need any further proof. However, school administrators and others who are concerned about costs and the possibility of misinformation have demanded more reproducible proof. There have been skeptics, and a number of quantitative studies have attempted to validate this form of communication. In each of them, the student was asked to convey some information not known to the facilitator. However, most of these studies have given negative results because of serious flaws in their methods, resulting from a failure to understand what was being tested. In fact, all that those studies have shown is that it is possible to interfere with the process of facilitated communication.

Those of us who have had extensive experience realize that the non-verbal people are shy and that communication is inherently difficult for many of them. One attempted validation method used has been to show four objects, then bring in the facilitator and try to get the names of the objects. But who has not had the experience of being unable to think of the name of a familiar person when suddenly confronted with the need to make an introduction? Finding names for objects is not easy for many non-verbal people, although they can do better with practice in a relaxed setting. In another kind of failed validation experiment, pictures are shown to the person communicating and to the facilitator, with a screen arranged so that each could not see what the other saw. When the two saw the same picture, sometimes the name was typed, but not when different pictures were shown. This not only involves the problems of naming objects, but also defeats the facilitated communication by distracting the facilitator who should be paying attention to nothing but the movements of the hand being steadied, avoiding perseveration on one key to produce a string like xxxx. The facilitator needs to make sure that the person is concentrating on the task of communicating.

Despite the handicaps of the non-verbal subjects, statistically valid tests of facilitated communication can be done. It is necessary first to test whether the person can do the sort of thing that is asked, under quiet, relaxed conditions. Not every non-verbal person can do everything. It has been said, quite rightly, that they have "splintered abilities," very strong in some things but deficient in others. Once it has been found that the person can do something such as match a name to a picture of an object of or even allowed to practice that skill until it can be used during the validation test. This might well take several weeks. All of us have practiced taking examinations from infancy, so that most of us are not upset by further testing. Finally, the facilitator should not be distracted by information, true or false. Any physicist knows that you must be careful to disturb the thing being measured as little as possible. To disturb the communication being tested is like looking for a ping pong ball on the floor of a dark room by shuffling your feet around. If you kick it even slightly, it's not there anymore and you can deny its existence.

Indeed four such tests have been carried out and announced. In Australia students were able to communicate the order of four blocks, colored red, yellow, green and blue, which the facilitator could not see. In a court case in New York, a well-practiced non-verbal girl was able to identify objects whose photographs were shown to her. Attempts to fool the facilitator by showing pictures which were sometime the same, sometimes not, were overcome because the facilitator deliberately ignored anything shown and concentrated on the communication. In Connecticut the person was shown a page with a question on it, and gave the answer by communication through a facilitator who could not see the questions. Many more such careful experiments are in progress.

Clearly, there is an enormous amount of evidence that, under proper conditions, facilitated communication really does work. Not everything communicated is true: non-verbal persons can fantasize, lie and tell the facilitator what they think is wanted just as normal persons do. Under some circumstances communication is very positive and unmistakable. At other times, the response can be weak and could be manipulated even unconsciously by the facilitator. But if it concerns a matter of any importance, the information can be check by at least one other experienced, responsible facilitator.

It is scandalous that some people are using the unscientific "validation" experiments as an excuse to describe the facilitated communication as fraudulent. One recent television program deliberately set out to convey that impression, even though the producers were given, and refused to show, much of the positive evidence. Even worse, they want to deny these non-verbal people their only way to escape their prison of silence and condemn them to a lifetime of futility and frustration.

Facilitated communication is real. It has been and is being subjected to rigorous well-designed scientific tests. Most of all, it has made an enormous improvement in the quality of life and given hope to many who had none.

Arthur L. Schawlow was the Jackson-Wood Professor of Physics emeritus at Stanford University. He received a Nobel Prize in 1981 and the President's National Medal of Science in 1991. He has also received seven honorary doctorates, from universities in six countries.

What the people with disabilities think of the program

To be denied the freedom of speech--a basic civil right! Frontline impugned my integrity and insulted my intelligence. They told evil lies in the guise of honest reportage.

I deserve to be heard. My name and image are used, why not my words? We need to fight bigotry with one loud unified voice.

I have a voice now--they will not return me to prison. They would not do this to Helen Keller and survive unscathed. They will not do it to us either. It's our turn now.

Sharisa Kochmeister

An FC user, Sharisa has now, after many years of training, become able to communicate without facilitation.

"FRONTLINE" PROGRAM SKEWED PRESENTATION

Because the Oct. 19 PBS "Frontline" program, "Prisoners of Silence," displayed a one-sided approach to its discussion of facilitated communication and special education professor Douglas Biklen's words -- employing skewed depiction of research, inaccuracies, omission of pertinent information and distortion -- we feel that members of the University Community deserve to hear in some detail why "Prisoners of Silence" lacks credibility.

To begin with, the program's producer-director-writer, Jon Palfreman, made it appear as if all students who facilitate typically look away from the keyboard and have their hands and messages controlled by facilitators. Because of the problem of facilitator cueing, which Biklen pointed out in his first article on FC, in the August 1990 Harvard Educational Review, Biklen asks those working with him to do all they can to have students become independent in typing and thus prevent cueing from occurring. Palfreman was well aware of this, but chose not to use footage he had of a student typing independently (Sharisa Kochmeister, who was featured Sept. 7 on the CBS program "How'd They Do That?") or even mention the fact that some students are typing independently.

Palfreman had viewers believe that all tests done to date report negative findings for facilitated communication (FC) when, in truth, a number of studies provide evidence that the method works. He chose not to do a filmed interview with, or mention, the work of leading pediatric neurophysiologist Dr. Margaret Bauman of Harvard University, whose brain research findings in the field of autism are consistent with the time of communication one finds with FC. Palfreman never explained that those with autism have difficulty initiating typing and isolating the index finger in order to type and therefore need constant assistance in the early stages of facilitation.

Nor did Palfreman identify as a Nobel Prize-winning physicist Arthur Schawlow of Stanford University, who he depicted in the program merely as a parent operating on blind faith. In reality, Dr. Schawlow wrote to Palfreman to state that facilitated communication works and to explain why the tests designed by Biklen's critics reflect bad scientific practice ("the so-called validation works ... have been so stupid as to disgrace the name research .... As a physicist, I know that you have to be careful no. t to disturb the system you are measuring. But that is exactly what many of these experiments did.").

Palfreman cut footage that would have allowed Biklen to explain fully why the "double-blind" tests his critics employ aren't sound scientifically: One of the principal anomalies found in those with autism, in addition to extreme anxiety, is a word-retrieval problem--the inability to name objects on demand. The students freeze, become anxious, and then, according to Biklen, look for cues from their facilitators. In his testing of students, Biklen asks them to type anecdotal information unknown to their facilitators but verifiable by family members. None of this was reported in Palfreman's program.

In addition, Palfreman also failed to use footage he had of Biklen recommending the use of independent facilitators to verify facilitated communication sin case of sexual abuse allegations and to then use the courts to establish whether students making such accusations were lying, fantasizing, or telling the truth.

And the program concentrated on showing bad technique in facilitation, where students are looking way from the keyboard, as if this were the norm, when Biklen insists that it is essential for students to look at the keyboard for valid communication to take place.

Palfreman treated as a mystery the idea that students who facilitate can read, whereas it is well known from special education articles starting in the 1960s that some of those with autism have shown early reading abilities, acquired not only from looking at educational children's television but from absorbing information from signs and labels on everyday objects and from taking books to bed with them. The program also made the fallacious blanket statement that those beginning to type through facilitation employed perfect spelling and grammar and conveyed complex thoughts. Actually, the spelling of most has been hit-and-miss and the grammar unconventional, all of it varying in quality, sophistication, and reliability from child to child, even though some students share the same facilitators. Finally, Palfreman neglected to mention that Biklen's most vocal critic, Dr. Howard Shane, is not a medical doctor, but holds two Ph.D.s, in speech pathology and audiology, from Syracuse University's School of Education.

We are frankly shocked and dismayed that a PBS program, of all things, would adopt a particular thesis and then skew information and selectively withhold contradictory evidence in order to make everything point toward one conclusion, misleading the viewing audience in the process. The scientific community and the general public deserve better, to say nothing of people with autism and their families, whose lives hang in the balance.

Hill is Syracuse's vice president for public relations; Harvith is director of national media relations. An earlier version of this article appeared in the Oct. 25, 1993, Syracuse Post-Standard. Reprinted,with permission, from the Syracuse Record.

The basic facts about Facilitated Communication Training (FCT) are on the DEAL website here.

The early development of FCT is covered by Rosemary Crossley in Flying High on Paper Wings.

Chris Borthwick looks at some of the sociological aspects of the FCT debate here.

Several authors rebut the attack on FCT made by the TV program Frontline.

Joan Dwyer writes a long but rewarding article on FCT and the law here.

An extensive bibliography on FCT is available here.

Prisoners of Silence; What Frontline Didn't Tell You