Jump to content

Facilitated communication

From Wikipedia, the free encyclopedia
This is an old revision of this page, as edited by ClueBot (talk | contribs) at 10:52, 16 October 2007 (Reverting possible vandalism by Special:Contributions/Igorgonzola. If this is a mistake, report it. Thanks, ClueBot. (20421) (Bot)). The present address (URL) is a permanent link to this revision, which may differ significantly from the current revision.

Facilitated communication (FC) is an augmentative communication strategy, that is, a communication strategy used by people without functional speech. In Europe and Australia, where it originated, the technique is called Facilitated communication training or (FCT). Facilitated communication training is a strategy for teaching people who need to augment their speech to use communication aids with their hands. It is particularly appropriate for people who can move their hands and arms freely but who have difficulties with other aspects of communication aid use such as motor planning, eye-hand co-ordination, scanning displays, index-finger isolation and pointing. In facilitated communication training (FCT) a communication partner (facilitator) helps a communication aid user to overcome difficulties in hand use and develop functional movement patterns. The facilitation required varies from user to user. Some people require assistance to isolate an index finger for pointing, some require prompting to look at what they are doing, and some require slowing down to counteract perseveration or impulsivity. The physical contact provided ranges from hand support (initially required by some individuals with severe neuro-motor impairments) to a hand on the shoulder of a person who finds it hard to maintain a stable trunk position.

The immediate aim when facilitating communication is to allow the aid user to make choices and to communicate in a way that has been impossible previously by pointing at items on a communication device (often a picture board, speech synthesizer or keyboard) The ultimate goal of the method is to enable the person to develop the skills needed to use augmentative communication devices independently. This is achieved by both reducing the amount of facilitation provided as the aid user's skills improve, and by introducing communication strategies which require less motor co-ordination. For example, a student with tremor who requires arm support when typing on a normal computer keyboard may use a modified keyboard with only six large widely-spaced keys to answer multiple choice questions independently.

Facilitated communication training is most often used with persons with developmental disabilities, most commonly autism and Down syndrome, populations in which some neurologists and psychologists believe there is a high incidence of dyspraxia, or difficulty with planning and/or executing voluntary movement.[1] Facilitated communication has also been used by people who suffer from Cerebral Palsy and Rett syndrome. Because of the severe and permanent nature of their neuro-motor impairments, these people are less likely to become independent communication aid users.

Facilitated communication has been controversial since its first recorded use in Australia in 1977. There are two main reasons for this. First, some people previously believed to be severely cognitively impaired generated communication with facilitation which, if valid, raised major concerns about the validity of the current methods of assessing the intelligence of people without speech. Second, the involvement of a second person, the facilitator, in the communicative process raised obvious questions as to who was generating the communication. Initial efforts to resolve questions of authorship focused on testing communication aid users. This added to the earlier controversy as the opponents and proponents of facilitated communication disagreed with each other's methodologies and results. Following considerable media coverage, both positive and negative, in the early 1990's, and the publication of many journal articles, again, both positive and negative, some large professional organizations including the American Psychological Association (1994) adopted negative statements on the technique and some large disability organizations including TASH (1993) adopted positive statements on the technique.

The outcomes of all physical and interactive therapies, including speech therapy, depend to a significant extent on the expertise of individual therapists. The outcomes of communication therapy involving facilitation are similarly dependent on the skills of individual facilitators, with the additional complication that this therapy produces short-term outputs (the output from the communication aids used during training) as well as long-term outcomes (improvement in hand skills and communication aid use).

The outcomes of some people without speech once assessed as having significant intellectual impairments who started using communication aids with facilitation as children, moved into mainstream education and undertook tertiary studies while developing the ability to type without facilitation, have shown that facilitated communication training can produce beneficial results when it is used consistently for prolonged periods cv Lucy Blackman and Sue Rubin. The output of people who are using communication aids with facilitation still generates controversy. Training packages and guidelines for facilitators have been produced by tertiary institutions and government departments in several countries, including the U.S.A., England, Italy and Australia. Nonetheless the quality of facilitation provided to communication aid users is variable, with consequent variability in the reliability of the output.

History

Facilitated communication first drew attention in Australia in 1977, when Rosemary Crossley, teacher at St. Nicholas Hospital, produced communication from 12 children diagnosed with cerebral palsy and other handicaps and argued that they possessed normal intelligence. These findings were disputed by the hospital and the Health Commission of Victoria; however, in 1979 one of Crossley's students, Anne McDonald, left the hospital after successfully fighting an action for Habeas Corpus in the Supreme Court of Victoria. After continuing controversy the Victorian Government closed the hospital in 1984-5 and rehoused all the residents in the community. Crossley and McDonald wrote a book about the experience called "Annie's Coming Out" in 1984.

Facilitated communication gained more credibility when Arthur Schawlow, a Nobel-prize-winning physicist, used it with his autistic son in the early 1980s and felt that it was helpful. His experience and its effects on the disability community are described on the Stanford University website [1]: "They became champions of the technique and were largely responsible for introducing it to the United States, where it remains controversial."

In 1989 Douglas Biklen, a sociologist and professor of special education at Syracuse University, investigated Rosemary Crossley's work in Australia. She was then Director of DEAL (Deal Communication Centre), Australia's first federally-funded centre for augmentative communication. Biklen helped popularize the method in the USA and created the Facilitated Communication Institute at Syracuse University.

After starting to use the method in Syracuse, Biklen reported startling results in which students with severe autism were producing entire paragraphs of clarity and intellect. This produced an explosion of popularity. The method spread across the USA, especially due to its seeming success with people with autism, a severe developmental disability accompanied by difficulties with communication. Facilitated communication was strongly embraced by many parents of disabled children, who hoped that their children were capable of more than had been thought. (Most of the foregoing discussion is referenced in Jacobson et. al., 1995).

Nevertheless, serious questions regarding FC soon began to surface. For example, some autistic FC users appeared not to be looking at the keyboard while typing (which is contrary to training standards for FC). This is usually explained by the well-accepted behaviour of seeing via peripheral vision. Still others used vocabulary that was apparently beyond their years and/or education, many producing poetry of varying complexity. However it has always been noted that people who are unable to verbally communicate, and therefore unable to socialise with typical peers, are often around adults for the majority of their day. This can provide an explanation for vocabulary beyond their years. It must also be noted that Facilitated Communication users are not mentally or intellectually disabled. A concern arose when some of the communications accused the parents of autistic children of severe sexual and/or physical abuse. Not all such allegations were proven true. However, numerous sexual abuse allegations made via FC have been found to be valid[2]. Also disturbing were the reports about facilitated persons that apparently were able to "mind read" the thoughts of their facilitators [3]. This has also been explained by the FC users' ability to read body language and predict obvious thought patterns relating to the topic of conversation, a common practice in any society. In late 1993, a Frontline (PBS) documentary highlighting these concerns was televised [4]; FC proponents responded with criticisms of negative bias [5],[6].

Around the same time, controlled studies were done on the method, some of which found that it was the facilitator who was unconsciously producing the communication. By the late 1990's, FC had been discredited in the eyes of some scientists and professional organizations, with some calling it pseudoscientific[7]. FC retained acceptance in some treatment centers in North America, Europe and Australia.

Research

In these negative studies, practitioners were unintentionally cueing the facilitated person as to which letter to hit, so the resulting letter strings did not represent the thoughts of the students but the expectations of the facilitators. However, some studies did show positive or mixed results (i.e., valid authorship by FC users; e.g. Calculator and Singer, [8], and [9]), and much debate ensued among scholars and clinicians [10]. In the opinions of proponents of the method (Biklen et al, 2005), positive results were generally seen in more naturalistic settings, and negative results in more controlled settings.

FC proponents argue that in most of the negative studies, the laboratory setting was itself the confounding variable: i.e., communication is inherently very difficult for autistic people, so they can't necessarily be expected to replicate their successes under unfamiliar or even hostile conditions (e.g., those in which continuance of access to FC was contingent upon passing or failing the test). However, not all negative findings were obtained in clinical settings only; some tests were smoothly embedded in familiar surroundings and daily activities (e.g. [11], [12]), in which participants sometimes did not even know they were tested. In their 1997 book, Contested Words Contested Science, Biklen and Cardinal (and others) attempt to shed light on why some controlled studies support FC while others do not ([13] see Reference list below).

Critics of FC question why people who can give speeches in public and go to college cannot answer a series of simple questions under controlled conditions. Critics also point out that positive results are typically obtained using "qualitative research methods" in which standard experimental controls for bias and subjectivity are weak or non-existent. Proponents argue that FC users have indeed passed controlled tests, often under duress, and as a condition for having access to basic human rights such as educational services and even freedom from institutionalization (e.g., McDonald, 1993; Crossley and McDonald, 1984; and Dwyer, 1996). Proponents also state that a handful of controlled studies supporting authorship by FC users have been published in journals ([14] Cardinal, Hanson and Wakehan, 1996 and others cited in this article).

Some people have continued to use FC, and some have attended college [15].

Harvard University psychologist Daniel Wegner has argued that facilitated communication is a striking example of the ideomotor effect [16], the well-known phenomenon whereby individuals' expectations exert unconscious influence over their motor actions (Daniel Wegner). Even FC users and proponents do acknowledge the possibility of facilitators at times "guiding" users, consciously or unconsciously. Other theorists (Donnellan and Leary, 1995) argue that autism is in significant part characterized by dyspraxia (a movement disorder), and that there exists a synchronistic "dance" to communication in all mammalian social interaction which accounts for the mixed results in validation studies (http://www.autcom.org/rethinking.html).

Still, the most significant concern with FC was, and remains, that of authorship: the question of who is really doing the typing. Numerous controlled studies have unambiguously established that facilitator influence does occur. FC users and proponents acknowledge this phenomenon; Sue Rubin, an FC user initially diagnosed as mentally retarded but who now attends college and types without physical support (see below), has described her own experience with facilitator influence [17]. FC proponents point out that the fact that cueing occurs under certain conditions with certain FC users does not necessarily mean that it always occurs with all FC users. A few controlled studies since 1995 have demonstrated instances of genuine authorship by FC users ( [18], [19], and Sheehan and Matuozzi). These studies, and the emergence of independent typing in some FC users, demonstrates in the opinion of proponents that at least in some cases FC is valid; given the experimental evidence, it is impossible to say just how rare or how common such cases are.

Stephen N. Calculator (1999) says: "Whereas the use of FC proliferated in the United States and elsewhere following initial optimistic reports by Biklen (1990, 1993), Crossley (1992, 1994), and others, this fervor has not been matched by efforts to validate the approach or its theoretical bases. Investigators applying qualitative methods have had their outcomes of success for FC challenged by others in the scientific community who question the appropriateness of such methods in studying FC use. Meanwhile, experimental investigators have focused primarily on questioning and disproving the efficacy of this method. ... Caught in the scientific impasse are individuals with severe communication impairments who may or may not benefit from this approach. They and their families continue to be bombarded with contradictory information, philosophies, and recommendations regarding this method."

Mark Mostert (2001) says: "Previous reviews of Facilitated Communication (FC) studies have clearly established that proponents' claims are largely unsubstantiated and that using FC as an intervention for communicatively impaired or noncommunicative individuals is not recommended."

Independent Typing

The phrase "independent typing" is defined by supporters of FC as "typing without physical support", i.e., without being touched by another person [20]. Skeptics of FC do not agree that this definition of independence suffices because of the possibility of influence by the facilitator. For example, Sue Rubin, an FC user featured in the autobiographical documentary Autism Is A World, reportedly types without anyone touching her; however, she reports that she requires a facilitator to hold the keyboard and offer other assistance[21].

A number of other people who began communicating with FC have reportedly gone on to be independent typists (i.e., without physical support), and in some cases read aloud the words typed (Biklen et al., 2005). Critics complain that these cases have not been objectively and independently verified (Calculator, 1999); such verification is absent in peer-reviewed studies. However, a few individuals have in fact been cited as independent typists in independently-reviewed publications. Examples include Jamie Burke (Broderick and Kasa-Hendrickson, 2001), Sharisa Joy Kochmeister, and Lucy Blackman, author of the autobiography Lucy's Story (Blackman, 2001) (cf. Beukelman and Mirenda, 1998).

Douglas Biklen has compiled the reports from three FC users about their progress toward independent typing [22]. FC user Alberto Frugone has also eloquently described the emotional and physical hurdles involved (Frugone, 2005; online copy).

Beukelman and Mirenda, authors of a leading textbook on Augmentative and Alternative Communication, express strong reservations about the use of FC but nonetheless note the existence of "a small group of people around the world who began communicating through FC and are now able to type either independently or with minimal, hand-on-shoulder support. There can be no doubt that, for them, FC 'worked,' in that it opened the door to communication for the first time. ... We include FC here because of Sharisa Kochmeister, Lucy Blackman, Larry Bissonnette, and others who now communicate fluently and independently, thanks to FC. For them, the controversy has ended." (Beukelman & Mirenda, 1998). Stephen von Tetzchner, the author of another leading textbook on Augmentative and Alternative Communication has done theoretical research about facilitated communication (e.g. [23]). In his opinion "The existing evidence clearly demonstrates that facilitating techniques usually led to automatic writing, displaying the thoughts and the attitudes of the facilitators." (von Tetzchner, 2000, p. 177).

Amanda Baggs, a nonspeaking autistic woman who uses both FC and independent typing, has a great deal to say about how FC works. Her photo-essay Getting The Truth Out, designed to challenge preconceived notions about autism, includes a video showing her typing with one finger, without looking at the keyboard. She describes it as a skill similar to touch typing.

See also

References

Bibliography

Bauman, M., and editors of The Autism Society Of America (1993). An Interview with Margaret Bauman. Advocate, 24(4), 1 & 13-17

Biklen, D., with Richard Attfield, Larry Bissonnette, Lucy Blackman, Jamie Burke, Alberto Frugone, Tito Rajarshi Mukhopadhyay and Sue Rubin. Autism and the Myth of the Person Alone. New York University Press, (2005) ISBN 0-8147-9927-2

Biklen, D. & Cardinal, D. N. (1997). Contested Words, Contested Science: Unraveling the Facilitated Communication Controversy. Teachers College Press, New York.

Beukelman, D., and Mirenda, P. Augmentative and Alternative Communication: Management of Severe Communication Disorders in Children and Adults. Paul H. Brookes, (1998) ISBN 1-55766-333-5

Blackman, L. Lucy's Story: Autism And Other Adventures. Foreword by Tony Attwood. Jessica Kingsley Publishers, (2001) ISBN 1-84310-042-8

Broderick, A.A., and C. Kasa-Hendrickson (2001). "SAY JUST ONE WORD AT FIRST": The Emergence of Reliable Speech in a Student Labeled With Autism. JASH, 26(1), 13-24

Crossley, R., and McDonald, A. Annie's Coming Out. Viking Penguin, (1984) ISBN 0-14-005688-2

Calculator, S.N. & Singer, K.M. (1992). Preliminary Validation of facilitated communication. Topics in Language Disorders (Letter to the editor), 12(6), ix-xvi.

Calculator, S.N. (1999). Look Who’s Pointing Now: Cautions Related to the Clinical Use of Facilitated Communication. Language, Speech, And Hearing Services In Schools, 30 (Octovber), 408–414 (online version; PDF)

Cardinal, D. N., Hanson, D., & Wakeham, J. (1996). An investigation of authorship in facilitated communication. Mental Retardation, 34(4), pp231-242.

Donnellan, A.M. & Leary., M.R. Movement Differences and Diversity in Autism/Mental Retardation: Appreciating and Accommodating People with Communication Challenges. DRI Press, (1995) ISBN 1-886928-00-2

Dwyer, Joan. (1996). ACCESS TO JUSTICE FOR PEOPLE WITH SEVERE COMMUNICATION IMPAIRMENT. The Australian Journal of Administrative Law, February 1996, 3(2), 73-119. (online copy)

Frugone, Alberto (2005). Independence: What It Is, How To Reach It. Our Voices, March 2005. (online copy)

Intellectual Disability Review Panel. (1989). Report to the director-general on the validity and reliability of assisted communication. Melbourne, Victoria, Australia: Victoria Community Services.

McDonald, A. (1993). I’ve Only Got One Life and I Don’t Want to Spend It All Proving I Exist. Communicating Together, 11(4), 21-22

Mostert, M. (2001) Facilitated communication since 1995: A review of published studies. Journal of Autism and Developmental Disorders, 31(3), 287-313.

Sheehan, C. & Matuozzi, R. (1996) Validation of facilitated communication. Mental Retardation, 34 (2), 94-107.

Spitz, H. (1997). Nonconscious Movements: From Mystical Messages To Facilitated Communication. Lawrence Erlbaum Associates

Twachtman-Cullen, D. (1997). A passion to believe: Autism and the Facilitated Communication Phenomenon. Boulder, Colorado/Cumnor Hill, Oxford: Westview Press

von Tetzchner, St. & Martinsen, H. (2000): Introduction to Augmentative and Alternative Communication. Second Edition. London: Whurr

Wegner, D. M., Fuller, V. A., & Sparrow, B. (2003). Clever hands: Uncontrolled intelligence in facilitated communication. Journal of Personality and Social Psychology, 85, 5-19.

Retrieved from "https://en.wikipedia.org/w/index.php?title=Facilitated_communication&oldid=164927316"