Facts About Facilitated Communication by Douglas Biklen FACILITATED COMMUNICATION SHOULD NEVER INVOLVE GUIDING A PERSON AS HE OR SHE ATTEMPTS TO POINT OR TYPE. The idea is never to guide the person to a selection. In facilitation a parent, friend, teacher, speech language clinician or other communication partner provides physical and emotional support as the person with a communication disability tries to point in order to communicate. The method can involve pointing at pictures or letters. The physical support may include: assistance in isolating the index finger; stabilizing the arm to overcome tremor; backward resistance on the arm to slow the pace of pointing or to overcome impulsiveness; a touch of the forearm, elbow, or shoulder to help the person initiate typing; or pulling back on the arm or wrist to help the person not strike a target repetitively. Emotional support involves providing encouragement but not direction. THERE IS EMPIRICAL RESEARCH TO SUPPORT THE VALIDITY OF FACILITATED COMMUNICATION. Controlled studies (e.g. Intellectual Disabilities Review Panel, 1989; Calculator & Singer, 1992; Velazquez, in press), observational studies (Biklen, 1990 and 1993; Attwood & Remington Gurney, 1992) and autobiographical accounts (e.g. Eastham, 1992; Oppenheim, 1974; Nolan, 1987; and Crossley & McDonald, 1980) provide evidence that the method works. One explanation why some researchers (e.g. Wheeler et al, 1993; Szempruch et al, in press) have failed to replicate these positive results could be that their tests are not valid. Before discounting the potential competence of individuals with disabilities, researchers have the obligation to question the competence of their research designs. FACILITATORS CAN INADVERTENTLY INFLUENCE (i.e. cuing, leading) THE COMMUNICATION OF THE PERSON TO WHOM THEY ARE GIVING SUPPORT. Influence definitely can occur (see, for example, Biklen, 1990; Biklen, 1992; Biklen 1993; and Intellectual Disability Review Panel [IDRP], 1989). The IDRP study (1989) demonstrated that an individual who was able to type uninfluenced communication could also be susceptible to influence. *Hence it is important for facilitators to monitor themselves and work to minimize influence* (Schubert & Biklen, 1993). But, the fact that a person may be subject to facilitator influence does not automatically indicate that the person is not capable of uninfluenced communication! IT IS NOT NECESSARY FOR FACILITATORS TO BELIEVE IN TH COMPETENCE AND THE ABILITY OF THE PERSON WITH A DISABILITY IN ORDER TO MAKE FACILITATED COMMUNICATION WORK. There is no need to prejudge a person's ability until it has been demonstrated. Indeed, many people who have expressed extreme skepticism about the method have subsequently been successful with it (Schneiderman in 1993). Nevertheless, we have noted that as with any instructional situation, it is important for the facilitator/teacher to express confidence in the individual's ability to succeed with the method, much as a coach expresses confidence in a person's ability to learn a new sport or as a teacher exudes optimism that a young student can learn to read or do math problems. FACILITATED COMMUNICATION CAN BE TESTED. When introducing a person to facilitation for the first time, it is valuable not to be testing the individual, allowing a the person time to build his or her confidence with the new means of communicating. This does not mean that it is not possible to test facilitated communication. Clearly, for the method to gain wide acceptance, it must be examined rigorously through many kinds of tests and research. It is gratifying that despite the potential problem that research tests could intrude upon and upset the communication process, researchers are achieving success in controlled studies (IDRP, 1989; Vazquez, in press; Calculator & Singer, 1992), and in observational ones (Attwood & Remington-Gurney, 1992). While our own research is comprised mainly of long term observational studies (Biklen et al, 1992; Biklen & Schubert, 1991), some researchers at the Facilitated Communication Institute are now beginning to design controlled experiments as well. FACILITATED COMMUNICATION IS NOT A NEW METHOD. Facilitated communication is known to have been used at least three decades ago (see Oppenheim, 1974) and was discovered independently in Sweden (see account in Schawlow & Schawlow, 1985), Canada (Eastham, 1992), Denmark (Johnson, 1988), Australia (Crossley & McDonald, 1980), and the U.S. (Oppenheim, 1974; Schawlow & Schawlow, 1985; L. v. Board of Education, 1990; Berger, 1992). Only recently has the method spread widely; this has occasioned active debate about the method. SOME PEOPLE USING FACILITATED COMMUNICATION HAVE MADE ALLEGATIONS OF SEXUAL ABUSE. SOME HAVE BEEN SUBSTANTIATED. Some individuals have made allegations of abuse, but there is no evidence that the numbers of allegations by individuals using facilitation is proportionally different than the numbers of allegations made by speaking people. In a survey made at the SUNY Health Sciences Center, it was found for a given time period that of 6 case in which individuals alleged they had been sexually abused, for 4 of them there was physical evidence they had been abused (Botash, 1993). Cases can lead to court convictions (Randall, 1993) and/or confessions by the accused. As with allegations made by the nondisabled population, some allegations may be unfounded and others simply impossible to prove. IT IS POSSIBLE TO EXPLORE WHETHER ALLEGATIONS OF ABUSE MADE THROUGH FACILITATION ARE THE WORDS OF THE PERSON WITH THE DISABILITY OR THE PRODUCT OF FACILITATOR INFLUENCE. In an investigation, a second facilitator could be brought in to provide facilitation. If the person repeats his or her allegation with the same or similar details, this would indicate that the allegation originates with the person who uses facilitation to communicate. SOME COURTS ARE NOW ACCEPTING TESTIMONY GIVEN THROUGH FACILITATED COMMUNICATION. Testimony was given in an abuse case in Wichita Kansas; a jury found the accused guilty (Randall in Wichita Eagle, March 30 and 31, 1993). Also, the Supreme Court Appellate Division in New York state ruled that testimony given by such alternative means must be evaluated in each individual case (In the Matter of Luz P., Opinion & Order, January 14, 1993; Martin, 1993); to prove her competence to be a witness in her own case, Luz P. took and passed tests verifying her ability to communicate her own thoughts through facilitation (see Martin, "Facilitation theory tested", The Times Herald Record, July 31, 1993.) FACILITATED COMMUNICATION REQUIRES TRAINED FACILITATORS. It is important for potential facilitators to learn about the particular physical problems the method is intended to address; it is useful for new facilitators to practice technique, to learn how to monitor the person's eyes on the target, to teach finger isolation, pacing and other skills associated with working toward independent typing, to formulate getting-started activities and to work on fading physical support. Facilitators must also learn how to foster control by the person with the communication impairment over his or her typing, and to avoid facilitator influence, whether physical influence or verbal influence (e.g. completing sentences for the person, anticipating next letters and words). PARENTS AND FRIENDS CAN LEARN TO BE GOOD FACILITATORS. Some teachers and some parents seem to pick up the method quickly; for others it takes longer to learn. But many parents and teachers for whom it was initially difficult have been able to learn the method and to achieve confidence in their ability with it. IN ORDER TO COMMUNICATE THROUGH TYPING, THE PERSON MUST KNOW HOW TO READ. People do need to know how to read in order to be able to type out words. Interestingly, many people now using facilitated communication have already learned how to read but have had no means of showing that ability until they could type. Not surprisingly, individuals who use facilitated communication reveal varying literacy skills. If individuals cannot read, they can be introduced to facilitation in which they point to pictures. The manner of teaching them reading would be the same as for people who can speak. FACILITATED COMMUNICATION CAN BE USED IN COMBINATION WITH OTHER FORMS OF EXPRESSION. People who use facilitated communication may also continue to work on developing their speech; some people can say the words or letters they are about to type and some can speak a sentence that they have typed, even though they may be unable to carry on an open ended conversation. Others may continue to develop proficiency with manual communication. And certainly, using facilitated communication does not preclude learning other skills, such as independent living or employment related skills. WE CANNOT SAY WITH WHAT PERCENTAGE OF PEOPLE FACILITATED COMMUNICATION WILL WORK. The method *may* be useful for any individuals who cannot speak or whose speech is highly echoed or in other ways limited and who cannot point independently *and* reliably. But we have not selected a random group of people classified as autistic or developmentally disabled and tried the method with them, so we cannot say with what percentage it might work. Based on our experience, however, we believe that the method will be found to be useful for most people who have difficulties with speech and who cannot point reliably. FACILITATED COMMUNICATION DOES NOT WORK EQUALLY WELL WITH EVERYONE. As with any method, it may not be effective with some persons and will predictably have varying success with others. Success may be related to neurological factors (e.g. tremor, low and high muscle tone, lack of proprioceptive awareness) and to socio-emotional factors such as amount and nature of support, educational experience, and opportunities to practice. NOT EVERYONE USING FACILITATION CAN TYPE FLUENT CONVERSATIONAL COMMUNICATION. People vary in their communicative skills. Not surprisingly, individuals who share the same facilitator(s) demonstrate different levels of fluency as well as personal concerns or themes, distinctive phraseology or expressions, and other stylistic differences. IF A PERSON TYPES FLUENTLY WITH ONE OR TWO PEOPLE, INITIALLY HE OR SHE MAY STILL HAVE DIFFICULTY TYPING WITH OTHERS. Since confidence plays a big part in a person's success, changing facilitators may involve a period of adjustment and building or rebuilding of confidence. FACILITATED COMMUNICATION IS NOT A CURE FOR AUTISM OR OTHER DEVELOPMENTAL DISABILITIES. It is a means of communicating, not a cure. PEOPLE WHO USE FACILITATION TO COMMUNICATE MAY NOT ALWAYS NEED A FACILITATOR. THE GOAL IS INDEPENDENCE. Already some individuals in the U.S. and many more in Australia have demonstrated that they can learn to type independently. Because independent typing is a realizable goal, Rosemary Crossley has referred to the method as "Facilitated communication training." THE FACT THAT SOME PEOPLE USING FACILITATED COMMUNICATION CAN WRITE POETRY AND DEMONSTRATE HIGH LEVEL THINKING ABILITIES DOES NOT NECESSARILY MEAN THAT THEY CAN CONTROL ALL OF THEIR BEHAVIOR. The same neurological problems that make reliable independent pointing and speaking difficult may also affect other behavior, for example toileting. The fact that a person can type letters and thus communicate does not logically mean that all other difficulties would be eradicated, particularly if these involve stereotypies or obsessive compulsive behavior. At the same time, some people improve in these areas as their expressive communication developed. THE FACT THAT A PERSON CAN POINT EFFECTIVELY SOMETIMES DOES NOT GUARANTEE THAT HE OR SHE CAN DO IT ALL OF THE TIME, ON DEMAND. The issue is not whether a person can point, but whether he or she can do so reliably, that is on demand, for multiple step tasks as well as one-step ones. It is well known that there are neurological reasons other than intellect to explain why multiple step tasks might be difficult for people with developmental disabilities (see Kelso & Tuller, 1981; Miller, 1985; Maurer, 1992). Recent studies in the field of autism (e.g. Courchesne, 1993; Bauman in ASA, 1993) as well as in spina bifida, Down syndrome, Williams syndrome, Joubert syndrome, and hydrocephalus (see Leiner et al, 1991; Ziegler, 1990; and Bordarier & Aicardi, 1990) identify cerebellar abnormalities. It is known that the cerebellum plays an important role in regulating complex motor tasks. The idea of facilitation is to help individuals overcome particular difficulties with motor tasks. Over time, with practice and with improved confidence, individuals are expected to become able to type reliably, without a facilitator. References Arnold, R., Yule, W., & Martin, N. (1985). The psychologicalcharacteristics of infantile hypercalcaemia: A preliminary investigation. Developmental Medicine and Child Neurology, 27, 49-59. ASA Editors (1993). An interview with Dr. Margaret Bauman,Advocate, 24 (4), 1 & 13-17. Attwood, T. & Remington-Gurney, J. (1992). Assessment of literacyskills using facilitated communication. In C.E. Van Kraayenoord (Ed.) A survey of adult literacy provisions for people with intellectual disabilities. Brisbane, QLD: University of Queensland, Schonnel Special Education Research Centre. Berger, C. (1992). Facilitated communication guide. Eugene, OR:New Breakthroughs, Inc. . Biklen, D. (1990) Communication unbound: autism and praxis. Harvard Educational Review, 60, 291-314. Biklen, D. (1993) Communication Unbound. NY: Teacher's CollegePress. Bordarier, C. & Aicardi, J. (1990). Dandy-Walker syndrome andagenesis of the creebellar vermis: Diagnostic problems and genetic counselling. Developmental Medicine and Child Neurology, 32, 285-294. Botash, A. Presentation at the Facilitated CommunicationConference, Syracuse, N.Y., May 22, 1993. Calculator, S. N. & Singer, K.M. Letter to the editor:Preliminary validation of facilitated communication. Topics in Language Disorders, 12, (4), ix-xvi. Courchesne, E. "Cerebellar abnormalities in autism," presentationat the annual convention of the Autism Society of America and the Autism Society of Canada, Toronto, July 13, 1993. Crossley, R. (1993). Facilitated communication training in NorthAmerica: Flying high on paper wings. International Exchange of Experts and Information in Rehabilitation, Interchange. Crossley, R. (1992) Getting the words out II: Case studies infacilitated communication training. Topics in Language Disorders, 12, (4), 46-59. Cummins, R. & Prior, M. (1992) Autism and AssistedCommunication: A Reply to Biklen. Harvard Educational Review, 62, (2), 228-241. Eastham, M. (1992) Silent words. Ottawa: Oliver Pate. Intellectual Disability Review Panel. (1989) Investigation intothe reliability and validity of the assisted communication technique. Melbourne: Department of Community Services, Victoria. Kelso, J.A.S., & Tuller, B. (1981). Toward a theory of apracticsyndromes. Brain and Language, 12, 224-245. L. v. Public Schools, No. 91-09, Final Order (TennesseeDepartment of Education Due Process Hearing, June 28, 1991). Leiner, H.C., Leiner, A.L., & Dow, R.S. (1991). The humancerebro- cerebellar system: its computing, cognitive, and language skills. Behavioral Brain Research, 44, 113-128. Levinson, H.N. (1989). The cerebellar-vestibular predispositionto anxiety disorders. Perceptual and Motor Skills, 68, 323-338. In the Matter of Luz P, 92-07565, New York Supreme Court,Appellate Division, Second Judicial Department,Opinion & Order, January 14, 1993 Martin, E. (July 31, 1993). Facilitation theory tested. The TimesHerald Record. Pages 1 & 18. Maurer, R. (1992) The neurology of facilitated communication: Isautism a motor disorder? Paper presented to the Autism Society of America meeting, Albuquerque, NM. Miller, N. (1985). Dyspraxia and its management. Rockville, MD:Aspen. Nolan, C.(1987). Under the eye of the clock. New York: St.Martin's Press. Oppenheim, R. (1974). Effective teaching methods for autistic children. Springfield, IL: Charles C. Thomas. Randall, G. (March 30, 1993). Disabled boy gives landmarktestimony. Wichita Eagle, Pages 1a & 5a. Randall, G. (March 31, 1993). Live-in aide convicted of sexualabuse; Autistic boy's allegations put communication method to test. Wichita Eagle, Pages 1a & 8a. Schawlow, Arthur T. & Schawlow, Aurelia L. (1985) The endlesssearch for help, in: M.F. Brady & P. Gunther, (Eds) Integrating Moderately and Severely Handicapped Learners: Strategies that work (Springfield, IL, Charles Thomas Publishing). Scubert, A. & Biklen, D. (1993). Issues of influence: someconcerns and suggestions. Facilitated Communication Digest, 1, (3), 11-12. Szempruch, J. & Jacobson, J.W. (in press) Evaluating facilitatedcommunications of people with developmental disabilities. Research in Developmental Disabilities. Vazquez, C. (in press). Facilitated communication: A multi- taskcontrolled evaluation. Journal of Autism and Developmental Disorders. Wheeler, D.L., Jacobson, J.W., Paglieri, R.A., & Schwartz, A.A.(1993). An Experimental Assessment of Facilitated Communication. Mental Retardation, 31, (1), 49-60. Stephen Drake Phone:(315)443-3702 Facilitated Communication Institute Syracuse University Bitnet:sndrake@sued.bitnet 364 Huntington Hall Syracuse, NY 13244 Internet:sndrake@sued.syr.edu