Imagine yourself as the person you are now and then imagine yourself not being able to speak or move the way you presently do. Imagine that you have had a stroke or have developed Parkinson's disease or some similar disorder. It wouldn't take you long to figure out that when you can't speak either clearly or at all, and when you move in different or unusual ways (or don't move at all!), it is very difficult to help other people come to know who you really are.
If you have had something go wrong with your health as an adult which affects your speech and movement, at least some people had a chance to get to know you before these important circumstances changed. Those people have a "picture" of you that they hold in their mind even when your talking becomes unclear or when you can't control your hands and your body. That "picture" allows people around you to continue to think of you as a competent person.
But when you are born with difficulties in the areas of speech and motor or movement control, people come to know you in a very different way. They see you, perhaps, as incompetent or less capable. The trouble is, there is no chance to convince them otherwise if you can't speak and don't move very well. The labels "mentally retarded," "autistic," "developmentally delayed," and the like frequently result.
Recent research efforts and articles in professional journals (Leary & Hill, 1996; Williams, 1994) suggest that (contrary to what we have always thought) some people who don't develop speech and who don't "respond" to their environment and other people in typical ways may not always have mental retardation. They may be competent people who just can't speak or physically respond to their world in typical ways. This is truly a trap for the affected person, like being frozen in a glass bubble. You see and understand everything going on around you and everyone can see you, but you say very little or nothing and your movement is very limited. Others can't understand who you really are.
For some people who have been known as mentally retarded, autistic, or developmentally delayed, all this is changing. Through a process which supports communication in a different way, we are beginning to understand who these people truly are. That process is known as facilitation or, in this instance, facilitated communication training.
Facilitation provides necessary physical support so people can move in purposeful ways. Typically, for people who can't speak and who don't have reliable hand movement, that means physically supporting them so they can point to or select in some fashion with their hand or fingers desired pictures, words, or letters. In this fashion, some people effectively communicate by pointing to pictures or whole words. Others are capable of typing complex thoughts.
In the early stages of using facilitation, the most frequent type of physical support involves stabilizing the hand and forearm of the new communicator. The person who does this stabilizing is called a facilitator. The facilitator uses various hands-on techniques to enable the person to reliably point to symbols, words, and letters in order to communicate. As the training progresses and the person gains skill, the objective is to reduce the support offered by the facilitator and for the person to gain independent physical control of their own movement so they can select pictures, words, or letters by themselves.
Early research into this process suggested that there was a strong possibility that letter selection on key boards was more a product of the facilitator's intent than a product of the person with the communication difficulty. The facilitators appeared to be creating the typed messages. Reports quickly circulated via media "exposes," suggesting that there was little benefit to be derived from involving people in facilitated communication training.
That was then ( 1992-1993); this is now. Recent research (Cardinal et al., 1996; Sheehan & Matuozzi, 1996), which is essentially quite different in form than earlier efforts, has discovered that, under specific conditions, some people are indeed able to produce typing that is authentic - produced by the user, not the facilitator. The new research has shown us that facilitation is very sensitive to the conditions under which it is tested.
Simple things like
all appear to be important variables to successful communication attempts.
These newer findings in people who are described as developmentally disabled parallel the literature from other disciplines such as neurology and neuropsychiatry (Damasio, 1994; Rogers et al., 1991; Sacks, 1995; Sacks, 1990; Sacks, 1987). Work with patients who are described as having Parkinson's disease, Tourette's syndrome, catatonia, among others, informs us that these groups of people can be observed to engage in very similar behaviors and have many of the same issues as many people with the labels of autism, Down syndrome, and PDD (Pervasive Developmental Delays). Not surprisingly, they respond in much the same way to their environments and the people around them and they benefit from many of the same adjustments that have been incorporated into the newer research around facilitation.
Developmental disability has always carried with it the inference of mental retardation, which has created major barriers for supporters in their relationships with people who might benefit from facilitation. However, learning, motivation, and physical control issues present in much the same way in all these people, whether they are known as developmentally disabled or neurologically impaired.
Research is beginning to support the concept of facilitation as a viable process for people with severe communication disorders, and in fact increasing numbers of people have achieved independent communication after several years of practice. These individuals are able to type their thoughts completely independent of any involvement from a facilitator. I have worked with a young woman who now produces and edits her own newsletter - independently. I know a young man who has undertaken his own research into the difficulties experienced by people with severe communication disorders similar to his own. He has gradually become able to type his responses to research questions independently. Many others, of school age, are finishing up their elementary and high school studies and taking their exams independently. However, all began their journey toward full communication and self-determination with the support of a facilitator and continued the trek, putting in the long hours of hard work necessary to achieve independence.
Jennifer, who is a young adult with autism, has been the key person in developing her own behavioral support plan. She has been able to be very specific in describing her internal perceptual circumstances. Some of Jennifer's suggestions to her supporters involved major life changes; others involved seemingly insignificant factors which were supporting her difficult behaviors. Armed with that information, those working with her have been able to significantly reduce many of her major behavioral problems. Concurrently, after only 14 months of facilitated communication training, Jennifer is approaching independence. Her desire to achieve that goal is tremendous, as is her willingness to make the effort that it requires.
In addition, Jennifer's new-found communication skills and the accompanying boost in confidence they have given her have spilled over into other areas of her life. She is now printing independently, playing board games independently, and trying out new activities. She is clearly a bright, energetic young woman who has finally escaped the glass bubble and some of the labels which had been her life until 14 months ago.
If her communication had been stopped when some called her method of communicating a hoax, Jennifer might well have gone on being viewed as a less-than-thinking being; instead, she is now seen as the vibrant, funny, and intelligent person that she really is. How many other Jennifers exist out there, living their lives frozen in glass bubbles, waiting for an opportunity, waiting for the rest of us to see them for who they truly are?
Leary, M.R. & Hill, D.A. (1996). Moving On: Autism and Movement Disturbance. Mental Retardation, 34, 1, 39 - 53.
William, D. (1994). Invited Commentary: In The Real World. The Journal of the Association for Persons with Severe Handicaps, 19, (3), 196 - 199.
Cardinal, D.M., Hanson, D. & Wakeham, J. (in press, August, 1996). An Investigation of Authorship in Facilitated Communication. Mental Retardation, 34, (4), xx.
Sheehan, C. & Matuozzi, R. (1996). Validation of Facilitated Communication. Mental Retardation, 34, (2), 94 - 107.
Damasio, A.R. (1994). Descartes' Error: Emotion, Reason and the Human Brain. New York: G.P. Putnam and Sons.
Rogers, D., Karki, C., Bartlett, C. & Pocock, P. (1991). The motor disorders of mental handicap: An overlap with the motor disorders of severe psychiatric illness. British Journal of Psychiatry, 158, 97 - 102.
Sacks, O. (1995). An Anthropologist on Mars. Seven Paradoxical Tales. New York: Alfred A. Knopf.
Sacks, O. (1990). Awakenings. New York: Harper Perennial.
Sacks, O. (1987). The Man Who Mistook His Wife for a Hat (and other clinical tales). New York: Harper & Row.
The Pennsylvania Journal on Positive Approaches is published by the Pennsylvania Office of Mental Retardation (OMR) Statewide Training Initiative through Temple University, Institute on Disabilities, University Affiliated Program and Contract Consultants, Inc., 105 Old York Road, New Cumberland, PA 17070. For subscription information, please contact Contract Consultants, Inc. at [717] 774 - 5455. Copyright © 1996 OMR/CCI. All rights reserved.
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