Journal of Autism and Developmental Disorders, VoL 22, No. 3, 1992

Questions About Facilitated Communication and Autism Margot Prior La Trobe University, Bundoora, Victoria 3083, Australia

Robert Cummins Victoria College, Malvern, Victoria 3144, Australia

Editor's note: During the past 12 months "Facilitated Communication" has been extensively promoted by the media in the United States as well as by ideologues who claim research accountability is incompatable with the faith needed for effective "Facilitated Communication." On the other hand, Australians have had over 8 years experience with this technique and have evaluated it through government review panels. These critical reviews have been ignored by Douglas Biklen as he promoted "Facilitated Communication" at the University of Syracuse School of Education. Because of this unusual and excessive media hype, we are publishing a review article from Australia presenting the best empirical critique available to date. Eric Schopler

Facilitated communication as an aid for people who are disabled is not new. There are numerous techniques ranging from simple symbol boards to complex computers which may be used to help the process of communication especially for people with physical handicaps that restrict their ability to use normal speech or normal keyboard techniques. However, recent developments in a particular type of facilitated communication developed through the work of Rosemary Crossley and her colleagues in Australia, and applied to people with autism, have aroused considerable concern. "Facilitated Communication is a method of training people in the use of augmentative communication aids which involves the communication partner, or facilita331

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tor, providing physical assistance to the aid users to help them to overcome physical and emotional problems in using their aid . . . . The technique differs from graduated guidance in that the intention of movement is the responsibility of the message sender. The message receiver is making physical contact with the sender only to overcome or minimize psychoemotional and/or neurophysiological problems affecting access" (Batt, 1990, p. 1). The spread of the application of facilitated communication to autism seems to have reached the status of a minor epidemic, as it has been uncritically adopted, in the absence of any empirical validation, by an increasing number of proponents in Australasia, North America, and Canada. This is hardly surprising, since parents of children with a handicap as severe as autism can be particularly vulnerable to promises of a breakthrough to normality for their noncommunicating children. Such vulnerability makes cries for a proper evaluation of the technique likely to fall on deaf ears, and adherence to the method and its promises a matter of faith and hope rather than decisions based on real data. Due to such emotional overtones, skeptics and critics are likely to be accused of lacking faith, of being unsympathetic, of being academic and unethical. These issues emerged in Australia several years ago when a substantial number of autistic children were reported to be communicating at a sophisticated, abstract level and complaining of years of misunderstanding, lack of care for their intellectual needs, and isolation. Some of those individuals were in education centers for autistic or intellectually handicapped children, and their teachers felt that such claims of intellectual sophistication would mean that their educational programs and the hard won adjustment by their families to their handicaps were at risk. Some parents were being made to feel extremely guilty by such claims. Other cases did not appear to have a diagnosis of autism but were given this label during the process of enrollment into the facilitated communication program at the DEAL Centre in Melbourne. At this time many concerns about the method were raised. These included the high degree of physical intervention provided by the assistant, even when it was clear that the "autistic" person had sufficient motor skills to select the letters required for their communications quite independently; the fact that the facilitation could not be taught to, or used by all those who wished to use it, sometimes including members of the client's close family; the apparent need for a strong belief in the power of the technique by the facilitator in order for it to work; and unwillingness by assistants (and allegedly their handicapped clients) to have their contribution assessed independently. Finally, when some objectivity was achieved (see

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Cummins & Prior, in press), there was evidence that the communication emanated from the facilitator. Many professionals dealing with clients with a wide variety of handicaps became convinced that at least on some occasions, assistants were attributing their own messages to the client, albeit perhaps unconsciously. One major issue involved the degree of assistance offered by the facilitator who may hold client's hand, arm, elbow, or wrist during communication, or alternatively may hold the communication board in front of the client's operative motor response. These techniques can be highly intrusive and their use, particularly for autistic children who are usually not severely motorically disabled, emphasizes the question of the validity of any communication where there is physical contact between client and assistant. There is evidence that facilitators can impose their own communications on clients (Catanese, 1988; Cummins & Prior, in press), and there is to date no hard evidence of independent communication from otherwise noncommunicating clients where the facilitator cannot be aware of the response asked of the client. However an independent investigation is now underway in the State of Queensland under the guidance of an autism researcher, Tony Attwood. For the autism community there are specific questions that arise because of the well-documented characteristics of the disorder that seem to be negated by some of the reported communication from autistic clients. First, it should be noted that the diagnosis of autism in many of the people involved with the method has not been established. Hence it is not possible to assess the specific relevance of facilitated communication for autistic people. Second, while it is possible that the communications from some cases (whether truly autistic or not) are genuine, many claimed communications and their language content arouse doubt about validity. For example, some of the words used are extremely rare and would not normally be found in the vocabulary of the young Australian; some conversations reported are of such an abstract and complex level that they seem like the output of highly educated adults with a particular interest in philosophical questions (see Biklen, 1990). Such data would be inconsistent with a vast amount of information on the language capacities of autistic children reported from around the world. There is little evidence of the kind of everyday conversation that dominates the interactions of most people. As Biklen (1990) noted, Crossley has said that she expects interesting or unique statements. These have certainly been reported. It does seem surprising however, that onb, autistic people whose communication is physically assisted in this way are able to produce such language. The numbers of clients showing this level of giftedness is also at variance with known population data on autism. Furthermore, the many carefully documented attempts to teach language

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to autistic children have been notable for their failure to achieve spontaneity and creativity in the language of these trained children. There are some curious aspects of facilitation that need explanation. It is unclear why physical contact, even if minimal, is necessary for clients to communicate after their ability to communicate has allegedly been established and they have become willing and able to do so. This is particularly puzzling in the absence of motor deficits. Full independence (i.e., true communication) does not seem achievable. Similarly it is unclear why some individuals who are keen to facilitate the person's communication, and who are very attached to the person (e.g., mothers), seem unable to do so, even when the client is communicating with Crossley and colleagues. Some facilitators have noted that their own thoughts or cues have insinuated themselves into the client's communication although the extent of such intrusions remains unassessed. One mother of a (genuinely) autistic young man reported to the senior author that when she thought about the appropriate answers to the questions she put to her son, that is what came out in his communications. However, when she deliberately made her mind go blank and refused to think about what he might communicate, he produced only "gibberish." When asked why she persisted with the technique in the face of this experience; she replied that she and her son enjoyed the outing to the center, that it was a happy "together" time for them, and that there was a good deal of pressure for her to persist in following the expectations of the center staff. She would not have liked to be seen to be out of line. An additional general issue is why physical hands-on facilitation is required for clients when inexpensive devices are available which enable even the most physically limited individuals to active switching mechanisms that enable independent communication. The proponents of the method may respond that it is the emotional support that is critical in their physical assistance, but they provide no explanation for the fact that even after up to 2 years of such support no independent communication appears possible. Finally, a review panel set up by the state government to investigate concerns raised by professionals in the disability field reported several puzzling aspects of the method (Intellectual Disability Review Panel, 1989). These included differences in the level of language sophistication elicited via assisted communication and that produced when not assisted; one client who when set up to produce communication in the usual way, but without the facilitator, produced nonsense; and the lack of cooperation from the facilitated communication center (DEAL) in a proposed controlled study of the technique.

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Further details of data from the review panel study and from the Interdisciplinary Working Party Report (1988) may be found in Cummins and Prior (in press). In summary, data obtained by these groups of professionals over several years, with clients of varying disabilities and under different conditions, provided no evidence validating the claim that communications were coming from the clients. On the other hand, there was direct evidence that facilitators were responsible for some communications in these investigations. Expectation, enthusiasm, and commitment are undoubtedly required for the method to work. Those with neutral or skeptical attitudes have had great difficulty in using the technique. For parents, teachers, and clinicians struggling to help autistic children achieve their potential, the possibility of discovering unexpected communication capacities is an emotion-charged issue. Since Kanner's early writings (1943) there has always been a sense that autistic people may have had abilities locked away behind their impenetrable, incomprehensible selfisolation. However, we now know that autistic children are not infinitely withdrawn, they do form relationships, they do engage in activities and communications which fulfill their needs and in which they have strong interests. In addition, they are physically able to operate on their environment in ways which they choose. Many do have the capacity for language, and some are able to use it, but it is not the kind of language purported to emerge via facilitated communication. Even the most sophisticated and gifted of them (see, e.g., Happ6, 1991) do not spontaneously communicate in the ways reported by Crossley and colleagues. To imagine that a select band of such cases could have suddenly emerged in one part of Australia over the past 5 years is difficult to credit. Until independent evidence is provided for the validity of this method in fiacilitating communication from autistic people, it is important to remain skeptical. One of the hallmarks of acceptable treatment is that it should do no harm. Adherents of this treatment should ask themselves about the risks and disadvantages to the autistic person and his or her caregivers of engendering belief in a possibly unrealizable "breakthrough." The adjustment of the family may be severely compromised, for example, by the family being made to feel guilty for years of neglect of their child's "true" capacities, or by feeling resentment when their child will not communicate with them. Such beliefs may also sabotage other educational programs, and may result in the generation of expectations which the autistic person is unable to meet in everyday life. In such cases the price for uncritical adoption of this method may be very high indeed. No one would knowingly deny autistic children the chance to emerge from their disorder. But would we offer them a drug treatment about which we had little or no scientific

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information? In our view a strong case exists for the inadvertent misuse and misinterpretation of facilitated communication.

POSTCRIPT On Sunday February 16th, 1992, the Melbourne Age newspaper carried a headline article reporting the outcome of a 2-week court case involving assisted communication. At issue was an allegation via assisted communication of sexual abuse, by family members, of a woman with intellectual disabilities. As a consequence of these allegations the woman had been removed twice from her home by government employees, only later to be returned due to her obvious distress at the separation. From February 3rd to 14th the Guardianship Board met to decide on custody of the woman. The family's barrister, seeking custody for the family, was opposed by two other barristers, one representing the Government and another representing the client using assisted communication. Evidence was presented from a psychologist with extensive expertise in the field, who had undertaken a detailed evaluation of the woman and her assistant, that the client had demonstrated no capacity for independent communication while being assisted under controlled conditions, and that all coherent communications under such circumstances had been generated by the assistant. This evidence was opposed by a group of nine people including Rosemary Crossley, all of whom claimed to have successfully assisted the client produce corroboration of the alleged sexual abuse. In a landmark decision the Board dismissed the evidence presented as a consequence of using assisted communication and ruled that the family should be awarded full control over the woman. Copies of these newspaper reports are available from the authors.

REFERENCES Batt, M. (1990, August). Facilitated communication--Parents'perspectives. Paper presented at the 4th International ISAAC Conference, Stockholm, and reproduced in the DEAL Newsletter, December 1990. Bilden, D. (1990). Communication unbound: Autism and praxis. Harvard Educational Review, 60, 291-314. Catanese, A. T. (1988). Dame Mary Herring Special Project 1984/5. Summary Report. In DEAL Communication Centre operations. A statement of concern. Melbourne, Australia: Interdisciplinary Working Party on Issues in Severe Communication Impairment. Cummins, R. A., & Prior, M. R. (in press). Autism and assisted communication: A reply to Biklen. Harvard Educational Review.

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HappY, P. (1991). The autobiographical writings of three Asperger Syndrome adults: Problems of interpretation and implications for theory. In U. Frith (Ed.), Autism and Asperger syndrome (pp. 207-247). Cambridge, England: Cambridge University Press Intellectual Disability Review Panel. (1989). Report to the Director-General on the reliability and validity of assisted communication. Melbourne, Australia: Community Services Victoria. Interdisciplinary Working Party on Issues in Severe Communication Impairment. 1988. DEAL Communication Centre operations. A Statement of concern. Melbourne, Australia. Author. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217-250.

EDITORIAL COMMENTARY Since the first media promotion of "Facilitated Communication," we have had the opportunity to observe this technique with many clients of all ages, including those with autism. Although a few were clearly able to use this technique, many were unable to do so, or were capable of a less restrictive communication technique. As of now it appears that "Facilitated Communication" has the potential for becoming a useful though not new technique for some people with autism, most likely found in the group known to be precocious readers, good with computers, signs, and other forms of communication facilitation. Current promoters of this technique have been unwilling to differentiate those clients for whom a facilitator is useful from those who can learn spontaneous communication on their own. Because of their insistence on uncritical faith, some parents are falsely led to expect a miracle. In addition, the ideologues promoting "Facilitated Communication" use an especially pernicious form of sales technique. They claim that "Facilitated Communication" requires faith and a trusting relationship to be effective. They claim that research is inappropriate because it interferes with the trusting relationship. This Catch-22 is then pushed further, even at some of our university education departments. Young students are told in "Facilitated Communication" workshops that they will fail at this technique if they lack trust. This is tantamount to emotional blackmail, which pushes students to "read" messages out of loosely held hands. If the rhetoric and media hype promoting "Facilitated Communication" without research accountability continues, it may well succeed in setting autism services back 40 years. At that time psychoanalytic ideologues claimed that the autistic child was bright but blocked by the unconscious hostility of a refrigerator mother. Today "Facilitated Communication" ideologues deny the special needs of autism by claiming all such children to be endowed with a normal intelligence blocked by a cerebral-palsy-like speech impairment.

Questions about facilitated communication and autism.

Journal of Autism and Developmental Disorders, VoL 22, No. 3, 1992 Questions About Facilitated Communication and Autism Margot Prior La Trobe Univers...
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