FACILITATED COMMUNICATION

Dr. Richard Simpson, University of Kansas

© Project ACCESS, Missouri State University

(Used with permission. Originally published in Missouri CASE Newsletter, February, 1993)

According to Crossley (1988), Schubert (1992), and Biklen (1990-92), facilitated communication is a technique that allows persons to communicate through the use of an augmentative communication device. Persons with autism and other disabilities, provided hand-over-hand or arm support by a non-disabled person, type their thoughts and ideas. Many have allegedly typed that "they are not retarded" -- that they are trapped within a body that does not allow them to move, talk, or write in a manner commensurate with their cognitive abilities. Biklen described Mark, a seven year old boy: "Without facilitation, Mark has no effective means of communicating, save to grab objects, pull people to objects or events that might be of interest to him, or throw tantrums. With facilitation, he can say what is on his mind, he can converse with other students, and he is doing school work at and above the grade level norm for his age" (1992, p.15). According to Biklen (1990), students with autism can carry on complex typed conversations on topics such as economics and current events.

Crossley (1988) anecdotally reported using facilitated communication successfully with approximately 30 students. Biklen and Schubert (1991), also using anecdotal recording, identified similar results with 21 students. However, they suggested caveats that precluded a more robust form of data collection, i.e., empirical scientific evaluation: students with autism would not communicate with more than one facilitator; attempts to validate facilitated communication through systematic means would violate the trust between student and facilitator, communicating that the student is incompetent; and levels of physical support may vary across or within sessions. Thus, Crossley, Biklen, and Schubert have argued that objective, scientific validation of facilitated communication is precluded.

To many parents and teachers, facilitated communication may be the technique that provides hope for their children with autism. It is a technique that, they think, may work with all if not most students with autism, because as Biklen (1990) reported, he has worked with students age 3 to 21 and all have literacy skills in place. Yet, some such as Calculator (1992) have cautioned that in the absence of scientific verification, facilitated communication must be viewed as little more than a ouija board process. Indeed, limited attempts have been made to validate this procedure. Among the few studies conducted on facilitated communication were those of the Intellectual Disability Review Panel in 1989. Based on their studies, the Panel concluded that where the facilitators had no access to students' questions, there was no evidence that the students were able to communicate independently.

More recently, Rimland described a facilitated communication "horror story" in the respected newsletter Autism Research Review International (1992). According to the article, the Australian newspaper, The Sunday Age, reported that a 29-year-old woman with retardation was removed from her home after allegedly claiming, via facilitated communication, that her family had sexually abused her. On two separate occasions the woman was removed from her home after typing out messages, with the assistance of a facilitator, that she wanted to leave home to escape sexual abuse. Both times, the woman was distraught when she was taken from the family from whom she had allegedly asked to escape. In order to establish reliability regarding the reported abuse, the government called in two facilitators, one of whom was "independent" to work with the woman. The woman's reports of sexual abuse came under question, however, when she was unable to answer simple questions (e.g., the name of the family dog, the name of her father), and in spite of using sophisticated grammar and spelling, she consistently spelled her own name incorrectly. In order to resolve the question of who was communicating, the Phillip Institute of Australia conducted mutually agreed upon tests. Specifically, 40 questions to which the woman knew the answers were prepared by the staff of the center she attended. The questions were taped by her usual facilitator, who facilitated the woman in answering the questions under four separate conditions: (1) the woman and the facilitator both could hear the questions; (2) earphones were worn by the facilitator and the woman such that the facilitator heard the same questions as the woman; (3) earphones were worn by the facilitator and woman such that the facilitator heard different questions than the woman; and (4) earphones were worn by the facilitator such that she heard only music, while the woman heard the questions. Results of this experiment revealed that under condition 1 the woman "got either eight or nine correct" out of 10 items; under condition 2 the woman correctly answered 4 of 10 items; under condition 3 the woman answered her own questions incorrectly, but gave four correct answers to questions only the facilitator heard; under condition 4 the woman was unable to correctly answer any question. The investigating parties concluded that the woman could not communicate independently; and follow-up tests revealed she was unable to even recognize letters of the alphabet.

Is facilitated communication a valid technique? According to Calculator (1992), "In the absence of empirical evidence, this communication technique remains one that is characterized by its ambiguity, mystique, recurring anecdotes, and spiritual underpinnings" (p.18). That is, there is no firm validation of this technique. Even Rimland (1992), generally a supporter of facilitated communication, acknowledges that empirical data is needed to use the technique, noting that "there are many questions that require answers before the ultimate promise of facilitated communication can be realized" (p.3). How can we be certain persons with disabilities are actually generating their own thoughts and ideas independent of the facilitator? Will this technique work for all students with disabilities, including autism? Does level of cognitive and language functioning impact effectiveness of facilitated communication? Additionally, answers to other basic questions regarding facilitated communication, some of which are listed below, must be gained prior to its wide scale adoption:

1. What degree of touch is required for students with autism who have specific characteristics, such as language level, motor skills, cognitive level, degree of disability?

2. Can more than one facilitator work with a student? Do specific student characteristics, such as language level, motor skills, cognitive level, degree of autism impact students ability to work with different facilitators?

3. Can students with autism and other disabilities generate typed language when the facilitator either (a) does not know responses to asked questions or (b) cannot see the keyboard?

4. Do students using facilitated communication demonstrate success if they (a) are asked to answer assessment questions posed by a moderator or (b) are asked to participate in a conversation with a moderator?

The importance of gaining reliable answers to the aforementioned questions, as well as validating the overall utility of facilitated communication with children, youth and adults with autism and other disabilities, is enormous. Recent media attention given to facilitated communication in combination with the hope it represents for families of individuals with autism makes it appear to be a highly desirable intervention tool. In 1992, for example, Prime Time and the Six O'clock News with Dan Rather provided emotive "evidence" that facilitated communication allows the full potential of autistic persons to be realized. However, neither program discussed in any detail the lack of validation for the technique, presenting it as a viable option for most children and youth with autism. Indeed, some have been so bold as to call the procedure a "cure for autism". Thus, it is understandable that parents and other advocates for individuals with autism would want their child or family member to have the benefits of facilitated communication. Yet, many schools, agencies and professionals are reluctant to commit significant resources to this method without having clear evidence that it is effective. Hence, conflicts between parents, who want the best and most effective opportunities for their family member with a disability, and school personnel, who are committed to employing validated, best practices procedures, is becoming increasingly common. These conflicts will continue until such time as facilitated communication is scientifically validated. Accordingly, proven scientific validity and utility of facilitated communication with individuals with disabilities must preceded its widespread adoption by schools and agencies.

In the final analysis, facilitated communication must be judged on the basis of its utility, i.e., does it work? Thus, regardless of what individuals believe about facilitated communication, its worth must ultimately be determined by whether or not it does what it is purported to do. Interventions, including facilitated communication, must influence positively the behavior and functioning of students with autism and other disabilities in academic, language, social, motor, vocational, and self-help/independent living areas, thereby enabling them to become more socially acceptable and better able to be a meaningful part of the world in which they live. Implementation of current best practices methods, and development of other effective methods, necessitates that unvalidated interventions such as facilitated communication be subjected to research scrutiny. Such efforts will provide information needed to guide effective use of these methods (e.g., prerequisite skills for facilitated communication, role of touch in the facilitated communication process, influence of trust and rapport in facilitated communication), allow consumers of facilitated communication (professionals and parents) to make responsible choices regarding the methods; and guide schools and agencies in determining the extent to which resources should be committed to facilitated communication. Consideration of a cautionary note by Eric Schopler, Director of Division TEACCH in North Carolina, deserves the attention of everyone involved with individuals with autism and other disabilities: "...if the rhetoric and media hype boosting 'facilitated communication' without research accountability continues, it may succeed in setting autism back 40 years" (1992, p.6).