Facilitated communication

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Facilitated communication (FC) is a process by which a facilitator supports the hand or arm of a communicatively impaired individual while using a keyboard or other device with the aim of helping the individual develop pointing skills and communicate. 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.[1] 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.

The procedure is controversial, since a majority of peer reviewed scientific studies concluded that the typed language output attributed to the clients was directed or systematically determined by the therapists who provided facilitated assistance. However, several peer-reviewed scientific studies found instances of valid FC, and some FC users have reportedly gone on to type independently.[2]

Contents

[edit] History

Facilitated communication first drew attention in Australia in 1977, when Rosemary Crossley, teacher at St. Nicholas Hospital, claimed to have 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. [3]

Facilitated communication gained further exposure 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: "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 (Deal Communication Centre),[5] 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.[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 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. 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).[7] Still others used vocabulary that was apparently beyond their years and/or education, many producing poetry of varying complexity. 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, some sexual abuse allegations made via FC have been found to be valid.[8] In late 1993, a Frontline (PBS) documentary highlighting these concerns was televised;[9] FC proponents responded with criticisms of negative bias.[10]

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

[edit] 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 report positive or mixed results (i.e., valid authorship by FC users; e.g. Calculator and Singer, [11][12] and much debate ensued among scholars and clinicians [13]. In the opinions of proponents of the method,[14] 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. [15][16] 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.[17][18]

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;[19] Crossley and McDonald, 1984;[3] and Dwyer, 1996[20]).[21] Proponents also state that a handful of controlled studies supporting authorship by FC users have been published in journals.[22]

Harvard University psychologist Daniel Wegner has argued that facilitated communication is a striking example of the ideomotor effect,[23] the well-known phenomenon whereby individuals' expectations exert unconscious influence over their motor actions (Daniel Wegner).[24] 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.[25][26]

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.[27] 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 reported instances of genuine authorship by FC users. [28] [22] 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 von Tetzchner, the author of another leading textbook on Augmentative and Alternative Communication has done theoretical research about facilitated communication.[29] 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."[30]

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."[31]

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."[32]

[edit] 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.[33] 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,[34] reportedly types without anyone touching her; however, she reports that she requires a facilitator to hold the keyboard and offer other assistance. [35]

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,[36] produced at Syracuse University. Critics complain that these cases have not been objectively and independently verified;[31] 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),[37] and Lucy Blackman, author of the autobiography Lucy's Story (Blackman, 2001).[2][38]

Douglas Biklen has compiled the reports from three FC users about their progress toward independent typing.[33]

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."[2]

[edit] See also

[edit] Notes

  1. ^ Bauman, 1993; Biklen, 1990 and 1997; Gernsbacher et al., "Infant motor dyspraxia as a predictor of speech in childhood autism." (available online; retrieved 5 February 2007)
  2. ^ a b c Mirenda, Pat; Beukelman, David R. (1998). Augmentative and Alternative Communication: Management of Severe Communication Disorders in Children and Adults. Paul H Brookes Pub Co. ISBN 1-55766-333-5. 
  3. ^ a b McDonald, Anne; Crossley, Rosemary (1984). Annie's Coming Out. Penguin (Non-Classics). ISBN 0-14-005688-2. 
  4. ^ Arthur Schawlow, Nobel laureate and co-inventor of the laser, dies: 4/99. Retrieved on 2007-12-31.
  5. ^ Facilitated Communication Training - DEAL COMMUNICATION CENTRE. Retrieved on 2007-12-31.
  6. ^ Facilitated Communication Institute: Syracuse University. Retrieved on 2007-12-31.
  7. ^ FACILITATED COMMUNICATION TRAINING STANDARDS. Retrieved on 2007-12-31.
  8. ^ Botash AS, Babuts D, Mitchell N, O'Hara M, Lynch L, Manuel J (1994). "Evaluations of children who have disclosed sexual abuse via facilitated communication". Arch Pediatr Adolesc Med 148 (12): 1282–7. PMID 7951807. 
  9. ^ FRONTLINE: previous reports: transcripts: prisoners of silence. Retrieved on 2007-12-31.
  10. ^ IS FACILITATED COMMUNICATION REAL?. Retrieved on 2007-12-31.
  11. ^ Simon EW, Toll DM, Whitehair PM (1994). "A naturalistic approach to the validation of facilitated communication". J Autism Dev Disord 24 (5): 647–57. doi:10.1007/BF02172144. PMID 7814312. 
  12. ^ Vázquez CA (1994). "Brief report: a multitask controlled evaluation of facilitated communication". J Autism Dev Disord 24 (3): 369–79. doi:10.1007/BF02172234. PMID 8050989. 
  13. ^ "Literature Review: Mental Retardation, 32(4) -- Exchange of opinion on the risks and benefits of faciltated communication." Drake, Steve. Facilitated Communication Digest (vol. 3, no. 1), November 1994. copy online, accessed 3 May 2008.
  14. ^ Biklen, Douglas (2005). Autism and the myth of the person alone. Cambridge, Eng: University Press. ISBN 0-8147-9927-2. 
  15. ^ Facilitated Communication - Montee et al. (1995). Retrieved on 2007-12-31.
  16. ^ Vázquez CA (1995). "Failure to confirm the word-retrieval problem hypothesis in facilitated communication". J Autism Dev Disord 25 (6): 597–610. doi:10.1007/BF02178190. PMID 8720029. 
  17. ^ Excerpts from Contested Words, Contested Science. Retrieved on 2007-12-31.
  18. ^ Cardinal, Donald N.; Biklen, Douglas (1997). Contested words, contested science: unraveling the facilitated communication controversy. New York: Teachers College Press. ISBN 0-8077-3601-5. 
  19. ^ 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
  20. ^ ACCESS TO JUSTICE FOR PEOPLE WITH SCI - Chapter Two. Retrieved on 2007-12-31.
  21. ^ 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)
  22. ^ a b Cardinal DN, Hanson D, Wakeham J (1996). "Investigation of authorship in facilitated communication". Ment Retard 34 (4): 231–42. PMID 8828342. 
  23. ^ How People Are Fooled by Ideomotor Action. Retrieved on 2007-12-31.
  24. ^ Wegner DM, Fuller VA, Sparrow B (2003). "Clever hands: uncontrolled intelligence in facilitated communication". J Pers Soc Psychol 85 (1): 5–19. PMID 12872881. 
  25. ^ 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
  26. ^ autcom.org. Retrieved on 2007-12-31.
  27. ^ 8-1rub1. Retrieved on 2007-12-31.
  28. ^ Weiss MJ, Wagner SH, Bauman ML (1996). "A validated case study of facilitated communication". Ment Retard 34 (4): 220–30. PMID 8828341. 
  29. ^ von Tetzchner S (1997). "Historical issues in intervention research: hidden knowledge and facilitating techniques in Denmark". Eur J Disord Commun 32 (1): 1–18. PMID 9135710. 
  30. ^ Harald Martinsen; Tetzchner, Stephen von (2000). Introduction to Augmentative and Alternative Communication: Sign Teaching and the Use of Communication Aids for Children, Adolescents and Adults with Developmental Disorders. Whurr Publishers, Ltd, 177. ISBN 1-86156-187-3. 
  31. ^ a b 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)
  32. ^ Mostert MP (2001). "Facilitated communication since 1995: a review of published studies". J Autism Dev Disord 31 (3): 287–313. doi:10.1023/A:1010795219886. PMID 11518483. 
  33. ^ a b LEARNING ABOUT INDEPENDENT TYPING FROM PEOPLE WORKING TO ACHIEVE IT. Retrieved on 2007-12-31.
  34. ^ stateart.com. Retrieved on 2007-12-31.
  35. ^ 8-1rub2. Retrieved on 2007-12-31.
  36. ^ myclassiclifefilm.com. Retrieved on 2007-12-31.
  37. ^ 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 (ERIC link)
  38. ^ Tony Attwood; Lucy Blackman (2001). Lucy's Story: Autism and Other Adventures. London: Jessica Kingsley Publishers. ISBN 1-84310-042-8. 


[edit] References

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 (October), 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.

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