It is important that the person look at the target. Also, the facilitator must work to avoid influencing the person's selections. Both of these concerns are addressed when people become more independent in their typing. Fading physical support causes the typists to pay better attention to looking at the keyboard.
Why is physical support necessary? Of course many people with severe communication disabilities can learn to communicate independently without ever needing physical support. However, there are many people who cannot speak or whose speech is highly limited and who cannot point reliably. Many of these people, including most individuals with autism and some people with other developmental disorders, experience what is known as "developmental dyspraxia".
The term apraxia means "without action." It refers to absence of, or difficulty with achieving, voluntary action. Mostly what we observe with people who have developmental disabilities such as autism and other related conditions is developmental dyspraxia (Kelso & Tuller, 1981; Miller, 1985; and Maurer, 1992). That is, they can act, but voluntary actions are often disordered in some way. Specifically, developmental dyspraxia may include problems of initiating action (getting started); problems of stopping action (perseveration); impulsiveness; problems of modulating pace of action; inability to speak or speaking that is repetitive, automatic, or poorly articulated and of unusual pitch, rhythm, and tone and so forth. Dyspraxia can be confusing, since a person may have good ability to carry out routine activities and difficulty only with new ones. Typically, any activity requiring multiple steps is more difficult than one- or two-step actions (Miller, 1985).
Physical support in facilitation should be designed to specifically address the dyspraxia, for example to slow down pointing so the person can overcome impulsiveness and problems of pacing action. Similarly, a hand on the forearm, elbow, or shoulder, or merely sitting next to a person typing can give a person confidence and help the person to focus on the task at hand, helping the person to initiate action and to relax enough to get sequencing correct. The goal of facilitation is to aid the person to overcome physical difficulties and then to work toward achieving more independent typing.
Why is confidence a component of the facilitated communication method? Not surprisingly, people who have had a history of difficulty with motor planning will lack confidence in their ability to carry out new tasks. Imagine what it must be like to have significant problems with motor planning and indeed any kind of voluntary action and to have this problem from a very early age. In effect, you will have never enjoyed success in getting your body to do what you want it to do when you want it and often have your body respond in ways that make you feel embarrassed! And imagine what it would be like to be evaluated on the basis of your nonresponsiveness or your impulsiveness. Hence the importance of being supportive to help the person develop confidence that he or she can develop the ability to be successful in communicating through typing.
Are there studies to support the theory of apraxia or developmental dyspraxia? Yes, these problems have been noted by other leading neurologists. Dr. Margaret Bauman, for example, commented last summer in the Autism Society's newsletter that:
In regard to autism, many child neurologists, particularly those of us who see many autistic children in our practices, believe that there is a high incidence of dyspraxia in this population. This observation was fairly recently supported by a personal communication pertaining to a small study in which ten adults with autism were studied with this question in mind. All were found to be dyspraxic. (Bauman, quoted in ASA, 1993).Further, recent research on the neurophysiology of autism finds anomalies not in the cerebral cortex where higher order thinking occurs but instead in the cerebellum and limbic system (ASA, 1993; Courschene et al., 1993). Obviously, this research does not rule out the possibility of cognitive deficits, nor does it confirm reports of success with facilitation. However, this research is consistent with a view that certain disabilities contain motor difficulty as one of their major components.
Other recent studies in the field of autism -- as well as in spina bifida, Down syndrome, Williams syndrome, Joubert syndrome, and hydrocephalus -- identify cerebellar abnormalities (Leiner et al., 1991; Zeigler et al., 1990; and Bordarier & Aicardi, 1990). It is known that the cerebellum plays an important role in regulating complex motor tasks.
Some news accounts report that there is no empirical research to support the validity of facilitated communication. Is that accurate? No. In fact, the method has been validated in two research studies in Australia, the latest one in 1993 (Steering Committee, 1993; Intellectual Disabilities Review Panel, 1989), in two recent studies in the U.S. (Vazquez, in press; and Cardinal, 1993), and in several autobiographical accounts in which individuals achieved independent or nearly independent (hand on the shoulder) typing (Eastham, 1992; Oppenheim, 1974; Ronnlund, quoted in Schawlow & Schawlow, 1985; and Rivin, 1993). Let me quote from two studies and summarize a third. In the first government study of the method in Australia, it was found that:
The validity of the communication while using the "assisted communication technique" was demonstrated in four of the six clients who participated in the two studies (Intellectual Disability Review Panel, 1989, p. iv)Then, in a government study in Queensland Australia, carried out by a leading authority in the field of autism, Dr. Anthony Attwood and his colleague Jane Remington-Gurney, it was found that:
Results of transcriptions indicate that fourteen (65% of adults clients) were able to communicate information using language which was accurate and not previously known to the facilitator. Five clients appeared to have a significant idiosyncratic style to their written communication and nine adults plus three children (50% of study group) were able to respond correctly to questions in multiple choice situations where the facilitator did not know the correct response. In total, twenty-one (87.5%) of the study group had their communication validated using content and structural analysis of data (Steering Committee, Queensland Report on Facilitated Communication, 1993, p. 32).And in a forthcoming article in the Journal of Autism and Developmental Disorders, Professor Carol Vazquez reports from her controlled study that while both of her subjects had varying performance on different tasks, both demonstrated the ability to communicate information requested (which was unknown to the facilitators) under experimentally blind conditions (p.21 Vazquez in press).
Possible explanations for why so many individuals have failed to pass simple naming tests such as those shown on the Frontline program is that the task of naming pictures or reporting specific names of things --- an ability referred to as "word retrieval" -- - appears to be particularly problematic for individuals with autism and certain other developmental disorders (Crossley & Remington-Guerney, 1992, p. 37). Such word retrieval problems, combined with anxiety, may simply undermine confidence so severely that the person cannot respond effectively and then begins to look for physical cues. I think this explains why some individuals have been found to type out words identifying pictures that had been shown to their facilitators but not to them. We see the same problems of word retrieval and anxiety in our own research. And we are well aware that facilitator cuing can and does occur; hence we strongly encourage facilitators to work on individuals achieving independence and on monitoring their facilitation technique. Our training sessions emphasize the importance of both validating individuals' communication and on strategies for achieving independence. But I want to point out that any student's failure on a naming task type of test or any evidence of facilitator cuing does not mean that the person is incapable of conveying his or her own thoughts through facilitation. Even a student in our research who now types with just a hand on the back of her shoulder cannot pass such a naming task. Yet she has validated her communicative ability countless times through her independent typing as well as through her distinctive style of communication and the fact that she can now convey information her facilitators did not know, but which can be verified.
Recently, when this student was asked how she communicated before she could learn to communicate with facilitation, she typed, "MOSTLY I HAD TO RESORT TO TELL MY PROTESTS THROUGH TEMPER TANTRUM". Then, explaining what a difference facilitation has meant to her, she typed, "I CAN RELATE TO PEOPLE AS SOMEONE WHO IS LOVING AND INTELLIGENT. YOU SHOULD BE IN MY SOUL TO FEEL THE DIFFERENCE IN THE QUALITY OF MY LIFE. THERE IS NO COMPARTIBLE FEELING. THE WORLD OF ISOLATION THAT NON COMMUNICATORS THINK IN IS HELL WE ARE UNABLE TO TOUCH THE WORLD AND MAKE A MARK." Asked how she managed before she could communicate by typing, she explained, "I LEARNED TO BE COME NUMB AND STAY INSIDE MYSELF." All of this was typed with a facilitator's hand on the back of her shoulder.
What kind of research are you doing at the Facilitated Communication Institute? Well, as I've mentioned, we are doing a great deal of work on independence. In one study, we are examining strategies by which people can achieve independent typing. That is going exceedingly well. We will be making our first preliminary reports on it this month at the meetings of the American Speech Language Hearing Association.
Another study concerns analysis of individuals' typing. We call this the portfolio study, because we have learned that individuals have very distinctive styles of communication, that many can convey information not known to their facilitators but which can be verified, and that individuals have very different styles of accessing the typing devices. Through very careful observation, we are learning how teachers and students validate their communication. Other studies growing out of our observational work examine how facilitation fits into school life and how people with varying developmental disabilities use facilitation.
In addition, we are designing a double blind controlled study that will involve games designed to help individuals relax as they prove their communicative competence.
I welcome the enormous research interest in facilitated communication nationally and internationally. It is important that the method continue to be researched using the full range of available research approaches and techniques.
It has been reported that many people using facilitated communication have made allegations of sexual abuse, none of which have been substantiated. That's not really accurate. Some individuals have made allegations of abuse using facilitated communication; there is no evidence, however, that the number of allegations by individuals using facilitation is proportionally different than the number of allegations made by speaking people. In a survey made at the SUNY Health Sciences Center, it was found for a given time period that of 6 cases in which individuals alleged they had been sexually abused, for 4 of them there was physical evidence they had been abused (Botash et al., 1993). In cases involving non- disabled persons, the proportion where physical evidence is found is actually considerably lower than that (Adams, 1992). It has been reported in New York State as well as in Kansas that allegations of abuse made through facilitation have led to court convictions and/or confessions by the accused. As with allegations made by the non-disabled population, some allegations may be unfounded and others simply impossible to prove. We have seen the same range of possibilities as with the non-disabled population.
Is there any way to demonstrate whether the allegations of abuse made through facilitation are the words of the person with the disability or the product of facilitator influence? Yes. In an investigation, a second facilitator who does not know the details of the allegation could be brought in to provide facilitation. If the person repeats his or her allegation with the same or similar details, this would indicate that the allegation originates with the person who uses facilitation to communicate. Then it is up to the courts to determine whether the allegation is true or not. And recently, a New York Court of Appeals ruled that testimony by a person using facilitated communication must be evaluated on an individual basis, just as any other means of communication.
One of the questions asked on the Frontline program concerned the reading, spelling, and writing abilities of people using facilitation. Could you explain this? It is true that we have found that many individuals with autism as well as some people with other disabilities have apparently learned to read without people around them necessarily having known they could read or read so well. Now many were taught to read, but predictably their teachers and parents stopped at some point because they were unable to talk back effectively and their pointing was unreliable. Undoubtedly they learned to read in various ways, through exposure to written communication in advertisements, on signs, on television, in newspapers, and in books and magazines. However, we find that individuals' literacy skills are extremely varied.
In terms of spelling and sentence construction, this too is not uniform. In fact, typing by the vast majority of individuals is filled with errors and often includes unusual sentence construction. I do think, however, that it is the individuals' choice of words that often seems remarkable. Recently, the brother of a Syracuse University alumnus from the doctoral program in school psychology flew to Syracuse to participate in a filming session with the 60 Minutes program. After the flight, when his sister asked how he liked it, he typed, "OVERTHEHCMLOUDS UNDERTHESUNINNTO THEHEEAT OOFINQUIRUY" (translation: over the clouds under the sun into the heat of inquiry.)
Does facilitated communication work equally well with everyone? No. As with any method, it may not be effective with some persons and will predictably have varying success with others. Success may be related to neurological factors (e.g. tremor, low and high muscle tone, lack of proprioceptive awareness) and educational experience and opportunities to practice.
Is facilitated communication a cure for autism or other developmental disabilities? No. It is a means of communicating.
Will people who use facilitation to communicate always need a facilitator? No. Already a few individuals in the U.S. and over 30 in Australia have demonstrated that they can learn to type independently (Crossley & Remington-Guerney, 1992). Because independent typing is a realizable goal, Rosemary Crossley has referred to the method as "Facilitated communication training." At this point we just do not know how many people will be able to achieve independent typing or how long it will take. For the few in the U.S. and the more than 30 in Australia who have now typed independently, it took several years of practice. Of course we should always remember that even if people do not achieve independence, it is nevertheless important that they have the right and opportunity to communicate.
Should researchers wait before making facilitated communication public? Should there be more research first? Should facilitators be licensed? I don't think it's realistic to assume that people without an effective means of communication can or will want to wait. And certainly their parents and friends or teachers will not want to wait. The minute that the New York Times, CBS Evening News and ABC's Primetime Live did stories on facilitated communication in 1991 and early 1992, word of the method was out. Also, people learned about it from my research articles. People began using it, even without training. At that point we were getting hundreds of calls from people who wanted to visit Syracuse to meet with us and to learn the method. Our response was to provide introductory training sessions every two or three months and to prepare training videotapes as well as research articles to explain the method. I feel obligated to provide people with the information I have. Obviously, the research will continue. But I want to emphasize that I have not had to change any of our basic assumptions about the method since 1990.
Before too long, when the method gains greater acceptance within professional associations, I expect that there will be a move to create certification standards for expert facilitators, in much the same way that there are standards for certified sign language interpreters. Certification may come to be required for facilitators in courts and for certain professionals supervising educational programs. At the same time, as with sign language, parents and other lay people as well as nonprofessional care workers will certainly continue to use the method without first being certified to do so.
How can parents, speech/language experts and others confirm individuals' ability to communicate with facilitation? Based on the knowledge gained from available research, I favor any of the following approaches, or a combination of them: 1), evidence that individuals have typed information not known to their facilitators but which can be verified as accurate; 2), evidence of individuals' distinctive communication styles, including personal themes, recurring favorite themes and phrases, patterns of spelling errors or creative and phonetic spelling, unique sentence structure, and similar factors; and 3), evidence that the individual has achieved independent typing.