Chapter 23

Syracuse University Basics about Facilitated Communication or Supported Typing:

• Facilitated communication is a form of alternative and augmentative communication in which people with disabilities and communication impairments express themselves by pointing (e.g.at pictures, letters, or objects) and, more commonly, by typing. It often is referred to alternatively as Facilitated Communication Training. • Facilitated communication training may be useful for some individuals who have limited or highly impaired speech and who cannot point reliably on their own. • This method will not work for everyone, but even for those for whom it is successful, it may take considerable time to achieve success, even weeks or months. • It is important that individuals with disabilities be presumed competent and desirous of ways to communicate; success or failure will depend not only on the communication student but also on the educational opportunities he or she finds available. Potential facilitators should seek training during all stages of learning and using the method. • The goal of facilitated communication training is independent typing or nearly independent typing (e.g., a hand on the shoulder or intermittent touch) or a combination of speaking with typing – some individuals have developed the ability to read text aloud and/or to speak before and as typing, even though they cannot still carry on extemporaneous conversations without also typing them. • For each individual who learns to use facilitated communication, it is crucial that the person learns means of demonstrating authorship, for example by learning to pass messages, by learning to make multiple‐choice selections without physical support, by speaking before and as typing, by typing without physical support, or through other available methods. • Research demonstrates that physical support can negatively influence the facilitated communication user’s typing, but at the same time there is substantial research in which individuals demonstrate the ability to produce authentic communication. • Facilitated communication is one of many forms of augmentative and alternative communication through which individuals with disabilities are finding their voice. • The Autism National Committee, an organization made up of both professionals and individuals with disabilities, endorses use of facilitated communication. TASH (formerly known as The Association for Persons with Severe Disabilities) regards access to facilitation and other forms of augmentative and alternative communication as a basic right. What Does Research Reveal About Its Effectiveness? Facilitated communication is a form of alternative and augmentative communication in which people with disabilities that involve communication impairment express themselves by pointing (e.g. at pictures, letters, or objects) and, more commonly, by typing. The method involves a communication partner (facilitator) who may provide emotional encouragement, communication supports (e.g., monitoring to make sure the person looks at the keyboard and checks for typographical errors) and a variety of physical supports, for example to slow and stabilize the person’s movement, to inhibit impulsive pointing, or to spur the person to initiate pointing; the facilitator should never move or lead the person (Biklen, 1993; Crossley, 1994). This method is often referred to as Facilitated Communication. Training to emphasize that this is a skill that can be learned, with the goal of physically independent typing, typing with minimal physical support (i.e., a facilitator’s hand on the shoulder) or a combination of speaking and typing. People who use facilitated communication typically include individuals who lack reliable pointing skills and who cannot speak or whose speech is extremely limited or disordered (e.g., limited to repetitive phrases, and speech that echoes what others around them have said or are saying); one important, current theory is that people with developmental disabilities often experience dyspraxia, difficulty with intentional action, including speech. Facilitated communication training teaches individuals to point reliably in order to use a computer or other electronic typing devices as well as letter boards or pictures. Facilitated communication can be used along with other communication methods, for example pictures or prepared words and phrases to indicate choices, yes/no switches or boards to indicate assent, and multiple choice selections. Use of the method requires training and adherence to basic core principles that lead to greater and greater independence by the facilitated communication user (Crossley, 1994). What is currently described as facilitated communication was discovered independently in different countries (e.g., Australia, Canada, Denmark, Ireland, Japan, Sweden, and the U.S.). One of the first published accounts of the method was by Rosalind Oppenheim in her book, Effective Teaching Methods for Autistic Children (1974); her method might better be described as aided handwriting. Then, in 1979, Anne McDonald, a person with cerebral palsy, used facilitated communication to request permission to leave a state supported mental retardation institution in Melbourne, Australia. She had to prove her competence in a message passing test before an Australian magistrate. Later she went on to co‐write the book Annie’s Coming Out (1980), which was subsequently dramatized in the film A Test of Love (Brealey, 1984), and she earned a bachelor’s degree from Deakin University. In 1994, Rosemary Crossley’s how‐to book on the method, Facilitated Communication Training, was published in the U.S. In 1990, Biklen published the first research article in the U.S. on the method, “Communication Unbound: Autism and Praxis,” describing use of facilitation with people with autism as well as other developmental disabilities. Fundamental to facilitated communication is the educator’s or communication specialist’s willingness to approach the student within the framework of presuming competence, such that the success or difficulties of a student to learn to communicate does not reside solely within the student but is seen as an interaction of the student with the environment. The presumption of competence is equivalent of an educator’s Hippocratic Oath, for it requires that the teacher assume the burden/responsibility of continually exploring ways for the individual to demonstrate competence. Linneman argues, “The specter of mental retardation,” the opposite of presuming competence, “creates an altered set of expectations” (Linneman, p. 183). Thus if a person is deemed to have “autism but not mental retardation, it is likely that his or her interpretive community will consider ‘mind’ as present but hidden. If mental retardation is detected (i.e., believed to exist and treated as real), then mind will become contested territory” (Linneman, p. 183). The presuming competence framework stands in stark contrastto the pessimism that surrounds a deficit model of disability. Virtually from its inception, facilitated communication has been controversial, for it was shown that a facilitator’s physical touch or support of the typist’s hand or arm could negatively influence the person’s pointing, even to the point of controlling the output (see for example: Bebko, Perry, and Bryson 1996; Bomba et al. 1996, Cabay 1994; Crews et al. 1995; Eberlin et al. 1993; Klewe 1993; Montee, Miltenberger, and Wittrock 1995; Moore et al. 1993; Regal, Rooney, and Wandas 1994; Shane and Kearnes 1994; Smith and Belcher 1993; Szempruch and Jacobson 1993; and Wheeler et al. 1993). All of these studies used a method that might be termed “message passing,” asking the facilitated communication user to convey information through typing that the facilitator had not seen; in some instances the facilitator was shown different information and the person typed what the facilitator was shown. But the story of facilitation and research on facilitation was just beginning. A number of studies, using multiple methodologies, have now successfully demonstrated authorship. The methods include: video eye‐tracking of the facilitated communication users’ eye gaze to verify that individual letters, or series’ of letters, were targeted by the individual before ever making the first move of the hand toward a target(Emerson, Grayson, and Griffiths 2001); linguistic analysis of individuals’ typing, demonstrating that the individuals with disabilities employ significantly different patterns of word use and sentence construction than their facilitators, and that they were different from each other even when they shared the same facilitator (Zanobini and Scopese 2001; Tuzzi, Cemin, and Castagna 2004, Niemi and Karna‐Lin2002, and Tuzzi 2009); evidence of speech before and during typing (Broderick and Kasa –Hendrickson,2001; Kasa‐Hendrickson & Broderick, 2009); message passing (Cardinal, Hanson, and Wakeham 1996, Sheehan and Matuozzi 1996, and Weiss, Wagner, and Bauman 1996). Each of these message passing studies , where individuals demonstrate authorship, involve multiple sessions, with the possible effect of allowing participants to be desensitized to anxiety over the course of the study. In other words, without the multiple events,a message passing study could create what researchers have called “stereotype threat,” in effect causing failure or impaired performance. It is also noteworthy that the Cardinal, Hanson and Wakeham study (1996) and the Tuzzi study (2009) involved the largest number of participants, 43 and 37 respectively. Tuzzi’s is the most recent of the authorship assessments, and she concludes that the individuals with autism produce more richly constructed texts than their facilitators, t hat their texts are distinctive from each other and from the facilitators, that they use more adjectives and adverbs and omit more words (e.g., words that would make a passage grammatically correct) than facilitators, and that such differences make it “plausible to attribute text to them” (the fc users), whereas it is “difficult to support” the hypothesis that facilitators could manage to create specifically different styles for multiple individuals with autism, and to do so over time. Despite the diverse types of research in which individuals have successfully demonstrated authorship, controversy over the method persists. Leading medical and psychology organizations like the American Psychological Association continue to assert that facilitated communication is an unproven procedure. Yet other organizations, for example the Autism National Committee, an organization made up of both professional and individuals with disabilities, endorses use of the method. TASH (formerly known as The Association for Persons with Severe Disabilities) regards access to facilitation and other forms of augmentative and alternative communication as a basic right: Freedom to Communicate. No person should be able to veto the augmentative or alternative communication which another person has chosen to use. This includes all forms such as communication devices, specially adapted keyboards and pointers, computerized equipment, picture and sign systems, gestures, sign language, and facilitated communication (http://www.tash.org/information_statements_resourses.html viewed November 30, 2009) A possible explanation for the continuing controversy and for why many critics of the method fail to acknowledge research that validates the method may be the tendency even within some professional circles to equate impairments in speech and physical ability with impaired intellect (for discussions of this hypothesis, see Borthwick and Crossley, 2003 and Mirenda, 2003). Perhaps the most compelling evidence that facilitation has been helpful is the fact that some individuals have developed the ability to speak before and as they type and/or progress to typing without physical support. Jamie Burke, a student at Syracuse University, has had his combination of speech and typing documented in research (Broderick and Kasa‐Hendrickson, 2001 and Biklen and Burke, 2006) and on film Kasa‐Hendrickson, Broderick, and Biklen, 2002). The work of other individuals who began with physical support and now type without physical support has been documented in films on major media outlets, for example BBC (Terrill, 2000) and CNN (Wurzburg, 2004). Sue Rubin, an undergraduate student at Whittier College, was at one time classified as profoundly retarded, yet with facilitated communication training she eventually developed the ability to type without physical support and is completing a bachelor’s degree in History. Alberto Frugone was also classified as severely intellectually impaired, yet he too learned to communicate with facilitated communication and now types without physical support; he is a student at the University of Genoa in Italy. Rubin, Frugone and others have published their accounts in Biklen’s book Autism and the Myth of the Person Alone (2005). Beukelman and Mirenda (1998) state that “in regard to a small group of people around the world who began communicating through FC (facilitated communication) and are now able to type either independently or with minimal, hand‐on‐shoulder support … there can be no doubt that, for them [facilitated communication] ‘worked,’ in that it opened the door to communication for the first time…. For them, the controversy has ended” p. 327).