Facilitated communication

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Facilitated communication (FC) is a process by which a person referred to as the "facilitator" supports the hand or arm of a communicatively impaired individual while using a keyboard or other devices with the aim of helping the individual to point and thereby to communicate. The procedure is controversial, since most peer reviewed scientific studies conclude that the typed language output attributed to the clients is actually directed or systematically determined by the facilitator. However, some peer-reviewed scientific studies have indicated instances of valid FC, and some FC users have gone on to type "either independently or with minimal, hand-on-shoulder support".[1]

Contents

History

Facilitated communication first drew attention in Australia in 1977, when Rosemary Crossley, a teacher at St. Nicholas Hospital, claimed to have produced communication from 12 children diagnosed with cerebral palsy and other disabilities and argued that they possessed normal intelligence.[2] 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 1984-1985 and rehoused all the residents in the community. Crossley and McDonald wrote a book about the experience called "Annie's Coming Out" in 1984.[3]

Facilitated communication gained further exposure when Nobel laureate Arthur Schawlow 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:

They became champions of the technique and were largely responsible for introducing it to the United States, where it remains controversial.[4]

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 Communication Centre[5] (since renamed the Anne McDonald Centre), then Australia's only federally funded centre for augmentative communication. Biklen helped popularize the method in the USA and created the Facilitated Communication Institute at Syracuse University.[6]

After starting to use the method in Syracuse, Biklen reported startling results in which students with severe autism were said to be producing entire paragraphs of clear and age-appropriate language. This produced an explosion of popularity; the method spread across the United States—especially because of its seeming success with people with autism. Facilitated communication was strongly embraced by many parents of children with disabilities, 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).

Critics raised questions. For example, some autistic FC users appeared not to be looking at the keyboard while typing (which is contrary to training standards for FC).[7] Still others used vocabulary that was said to be beyond their years and/or education, many producing poetry of varying complexity.

A concern arose when some of the communications accused the parents of children with autism of severe sexual and/or physical abuse. In late 1993, a Frontline (PBS) documentary highlighting these concerns was televised, comparing FC to Ouija.[8] Most allegations were not proven true. The New York Commission on Quality of Care and Advocacy for Persons with Disabilities had received 21 allegations of abuse by 1995, and all but 1 were not pursued for lack of proof or physical impossibility.[9] A 1995 study of 13 allegations found that "there is enough evidence to legally prove the allegations of sexual abuse of three children, and one additional child's perpetrator confessed..... Although there may not have been enough evidence for legal prosecution, there were seven children whose cases were determined to be indicative of abuse by CPS. The indication rate for abuse and neglect in this series is consistent with the upstate New York indication rate of approximately 47%" and said that "the results of this study neither support nor refute validation of FC".[10] FC proponents responded with criticisms of negative bias.[11] Sexual abuse accusations via facilitated communication have been frequently, though not invariably,[12][13] rejected as valid evidence in courts of justice,[9][14] and many autism societies recommend against using FC evidence to confirm or deny such allegations.[15]

Around the same time, controlled studies were done on the method, some of which found valid communication through FC but many of which reported that it was the facilitator who was unconsciously producing the communication. By the late 1990s, FC was widely regarded as a fringe therapy, with some calling it pseudoscientific.[16][17][18] FC retained acceptance in some treatment centers in North America, Europe and Australia.

The Association for Science in Autism Treatment reviewed the research and position statements and concluded that the messages typed on the communication device were controlled by the facilitator, not the individual with autism, and FC did not improve their language skills. Therefore, FC was reported to be an "inappropriate intervention" for individuals with autism spectrum disorders.[19]

TASH (2000) stated: "The question of authorship can become particularly controversial when the subject of what has been communicated concerns sensitive issues ... (TASH) encourages rigorous and ongoing training for people who decide to become facilitators; encourages careful, reflective use of facilitated communication; encourages facilitators to work in collaboration with individuals with severe disabilities to find ways of monitoring authorship when using facilitation."[20]

The Autism National Committee (AutCom) in 2008 issued a position paper in favor of FC, saying that the criticism is based in "flawed studies that are poorly designed and/or whose results are incorrectly extrapolated to the entire population of FC users", and saying that while facilitator influence is real and should be avoided, “The benefit of FCT in leading to FC as an acceptable and valid form of AAC has been established by (1) the number of individuals on the spectrum who are typing independently today; (2) the studies in which at least some messages were passed correctly; and (3) practical applications when individuals' messages about pain, discomfort, choices, and other personal information have been successfully addressed."[21]

Current position statements of certain professional and/or advocacy organizations do not support the use of facilitated communication because of their objections that it lacks scientific validity or reliability.[15] These organizations include the American Speech-Language-Hearing Association,[22] American Academy of Pediatrics (AAP),[14] American Psychiatric Association (APA),[23] American Psychological Association (APA),[14] Association for Behavior Analysis International (ABAI), American Academy of Child and Adolescent Psychiatry (AACAP),[14] American Association on Mental Retardation (AAMR; now the American Association on Intellectual and Developmental Disabilities; AAIDD),[14] Behavior Analysis Association of Michigan (BAAM), and Heilpädagogische Forschung. ABAI calls FC a "discredited technique" and warns that "its use is unwarranted and unethical."[24]

Research

Some neurologists and psychologists believe there is a high incidence of dyspraxia, or difficulty with planning and/or executing voluntary movement, among such individuals, and that this is alleviated by a facilitator's manual support.[25] Proponents of FC suggest that some people with autism and moderate and profound mental retardation may have "undisclosed literacy", or the capacity for other symbolic communication, consistent with higher intellectual functioning than has been presumed.

However, in the majority of controlled 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. Similar responses to possibly unconscious cues were seen in the "Clever Hans" case, where a horse gave correct answers to math problems by watching the reactions of its owner. However, some studies did report positive or mixed results, i.e., valid authorship by FC users,[26][27][28] and much debate ensued among scholars and clinicians.[29] In the opinions of proponents of the method,[30] positive results were generally seen in more naturalistic settings, and negative results in more controlled settings.

Some 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 cannot 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). Some tests that produced negative findings were smoothly embedded in familiar surroundings and daily activities[31][32] in which participants sometimes did not even know they were tested, and 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.[33]

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 argue 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;[34] Crossley and McDonald, 1984;[3] and Dwyer, 1996[12]).

Psychologist Daniel Wegner has argued that facilitated communication is a striking example of the ideomotor effect,[35] the well-known phenomenon whereby individuals' expectations exert unconscious influence over their motor actions.[36] Even FC users and proponents do acknowledge the possibility of facilitators at times "guiding" users, consciously or unconsciously.[21] 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.[37][38]

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.[39] 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.[21] A few controlled studies since 1995 reported instances of genuine authorship by FC users.[40][41] 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 but that 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."[42]

A 1998 research review for the Department for Education and Employment concluded that, apart from some anecdotal and ethnographical reports, all research found that the effect disappeared once the facilitators were controlled, and "[i]t would be hard to justify further research on this, given the many areas where there is insufficient, or no, research.".[43]

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."[44]

In March 2007, Scott Lilienfeld included facilitated communication on a list of treatments that have the potential to cause harm in clients, published in the APS journal Perspectives on Psychological Science.[45]

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.[46] Critics 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,[47] reportedly types without anyone touching her; however, she reports that she requires a facilitator to hold the keyboard and offer other assistance.[48]

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). An example of near-independent typing is shown in Douglas Biklen's documentary of artist Larry Bissonnette, My Classic Life as an Artist: A Portrait of Larry Bissonnette,[49] produced at Syracuse University. Critics complain that these cases have not been objectively and independently verified;[42] 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; Donnellan, Hill, & Leary, 2010),[50] [51] and Lucy Blackman, author of the autobiography Lucy's Story (Blackman, 2001).[1][52] A study by Bernadi and Tuzzi finding that the communication of FC users displayed the characteristics of valid communication recorded that of its 50 subjects 13 had achieved “full and independent control of the method” while 37 “had reached a high level of independence”.[53]

Douglas Biklen has compiled the reports from three FC users about their progress toward independent typing.[46]

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."[1]

See also

References

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Further reading

External links

Position statements against

Position statements in favor