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From Skeptic vol. 2, no. 3, 1994, pp. 68-76.
The following article is copyright © 1994 by the Skeptics Society,
P.O. Box 338, Altadena, CA 91001, (626) 794-3119. Permission
has been granted for noncommercial electronic circulation of this
article in its entirety, including this notice.
FACILITATED COMMUNICATION: MENTAL MIRACLE OR SLEIGHT OF HAND?
By Gina Green, Ph.D.
Contents:
The cliché that "there is nothing new under the sun" applies more than
ever to the mental health profession today. We seem to be experiencing a
myriad of new techniques to treat the developmentally disabled,
Facilitated Communication being one of the most popular, yet in reality
their underlying characteristics have been seen before. These components
make up the structure of what might be considered a social movement:
- Assertions that a new technique produces remarkable effects are
made in the absence of solid objective evidence, or what little evidence
there is becomes highly overblown.
- Excitement about a possible breakthrough sweeps rapidly through the
communities of parents, teachers, service providers, and others
concerned with the welfare of individuals with disabilities.
- Eager, even desperate for something that might help, many invest
considerable financial and emotional resources in the new technique.
- In the process, effective or potentially effective techniques are
ignored.
- Few question the basis for the claims about the new treatment or
the qualifications of the individuals making them.
- Anecdotal reports that seem to confirm the initial claims
proliferate rapidly.
- Careful scientific evaluation to determine the real effects of the
technique are not completed for some time, and can be made more
difficult than usual by the well-known and powerful effects of
expectancies.
- Some of these techniques have small specific positive effects, or
at least do minimal harm.
- Eventually they fall out of favor, sometimes because they are
discredited by sound research, sometimes simply because experience
reveals their lack of efficacy, but probably most often because another
fad treatment has come on the scene. Each retains some adherents,
however, and some go relatively dormant for a while only to emerge
again.
Parallel phenomena occur in other areas, such as treatments for AIDS,
cancer, and various psychological problems. At present the field of
developmental disabilities (especially autism) seems to be experiencing
an epidemic of novel techniques, or "interventions," as they are called.
Despite its parallels with other techniques, Facilitated Communication
(FC) has probably had a greater impact than any other novel intervention
in the history of treatment for persons with disabilities.
How FC Works
How does FC work? If you have never seen it in action it is quite a
phenomenon to observe. Individuals with "severe communication
impairments" (e.g., severe mental retardation, autism) are assisted in
spelling words by "facilitators" (teachers or parents) who provide
physical support, most often (at least initially) by holding their hand,
wrist, or forearm while they point to letters on a keyboard or printed
letter display. Right before your eyes, a mentally disabled person that
just previously had virtually no communication skills, suddenly begins
to spell out words, sentences, and whole paragraphs. Stories are told.
Answers to questions are given. A child that did not appear to know the
difference between a dog and an elephant can now be shown a series of
pictures, correctly identifying them one by one, as his or her hand
glides deftly over the keyboard, pecking out the correct letters. The
assumption, of course, is that most of the words spelled in this fashion
actually originate with the disabled partner and not the facilitator.
On its face, FC can seem simple and benign, and sometimes looks quite
convincing. Its main proponents sometimes characterize FC simply as a
strategy for teaching individuals to point in order to access systems
like synthetic speech devices and keyboards to augment their
communication. At the same time, however, they claim that it is a
revolutionary means of unlocking highly developed literacy, numeracy,
and communication repertoires in large numbers of individuals previously
thought to have severe learning difficulties. For all the world it looks
like a mental miracle, the kind of stuff they make movies about, as in
"Awakenings."
The theory is that many such individuals do not have cognitive
deficits at all, but instead have a presumed neuromotor impairment that
prevents them from initiating and controlling vocal expression. Their
average or even above average intelligence is locked away, awaiting
release. The neuromotor disorder is also presumed to manifest itself in
"hand function impairments" that make it necessary for someone else to
stabilize the individual's hand and arm for pointing, and to pull the
pointing hand back between selections to minimize impulsive or poorly
planned responding. Candidates for FC are also presumed to lack
confidence in their abilities, and so require the special touch and
emotional support of a facilitator to communicate, (i.e., a strap or
device to hold the person's arm steady will not work).
FC thus has an almost irresistible appeal for parents, teachers, and
other caring persons who struggle mightily to understand and communicate
with individuals who often do not respond or communicated in return. But
the very features that make FC so seductive, in combination with some
other potent factors, have made it a topic of heated debate between
believers and skeptics since its "discovery" in Australia nearly two
decades ago.
Beginnings Down Under
It all began in the 1970s with Rosemary Crossley, a teacher in an
institution in Melbourne in the Australian state of Victoria. She
suspected that some of her young charges with severe cerebral palsy had
far more ability than their physical impairments allowed them to
demonstrate. When she gave them hand or arm support to help them point
to pictures, letters, and other stimuli, Crossley became convinced that
several of the children revealed literacy and math skills that they had
somehow developed with little or no instruction, despite having lived
most of their lives in an impoverished institutional environment.
Right away there was controversy about the technique that Crossley
called Facilitated Communication Training. Two people were involved in
creating the messages, and simple observation could not reveal how much
each was contributing. Plus, many of the messages Crossley attributed to
these institutionalized individuals defied plausibility. "Facilitated"
accusations of abuse and expressions of wishes for major life changes
(like leaving the institution) made it imperative to determine whether
communications actually originated with the disabled individual or the
facilitator. Matters were complicated by Crossley's emerging status as a
heroine to many in the deinstitutionalization movement. Eventually,
after a series of legal proceedings, a young woman with cerebral palsy
with whom Crossley had developed a special relationship through FC was
released from the institution to reside with Crossley. The institution
was closed, and in 1986 Crossley started (with government financial
support) the DEAL Centre (Dignity through Education and Language) to
promote alternative communication approaches--principally FC--for
individuals with severe communication impairments. Use of the method
spread to programs in Victoria serving persons with various
disabilities, accompanied by controversies about communications
attributed to FC users on the basis of subjective reports.
Sufficiently serious issues arose to provoke formal statements of
concern from professionals and parents in 1988, and a government-sponsored
investigation in 1989. Despite Crossley's resistance to
objective testing (on the basis that FC users refused to cooperate when
their competence was questioned), some small-scale controlled
evaluations were conducted in the course of that investigation. When the
facilitator's knowledge about expected messages was well-controlled
(more on this later), and the accuracy of messages was evaluated
objectively, the effect disappeared. The disabled individuals were
unable to communicate beyond their normal expectation. Instead, it
appeared that the facilitators were authoring most FC messages,
apparently without their awareness. These early studies suggested that
FC was susceptible to a somewhat unusual kind of abuse: Allowing others
to impose their own wishes, fears, hopes, and agendas on nonspeaking
individuals.
A Social Movement is Born
At about that time Douglas Biklen, a special education professor from
Syracuse University, conducted a four week observational study of 21
DEAL clients said to be autistic, who were reported to engage in high-
level discourse with the help of facilitators. Professor Biklen was
already established as a leader in the "total inclusion movement," which
seeks the full-time placement of all students with disabilities,
regardless of their competencies and needs, in regular classrooms. The
report describing his first qualitative study of FC, which Biklen said
was begun "in an attempt not to test hypotheses but rather to generate
them," appeared in the Harvard Educational Review in 1990. He reported
that the communication of the individuals he observed (some of whom were
being "facilitated" for the first time) was sophisticated in content,
conceptualization, and vocabulary, and contained frequent references to
feelings, wishes to be treated normally and to attend regular schools,
and society's treatment of individuals with disabilities.
This was in sharp contrast with the well-documented difficulties in
social, play, cognitive, and communication skills that constitute
current diagnostic criteria for autism (not to mention that the
diagnosis is difficult to make and is applied to individuals with a wide
range of competencies and deficits in all those domains). In his seminal
article, Biklen mentioned the controversy over the Australian findings,
but asserted that informal "indicators that communication was the
person's own were strong enough, in my view, to justify the continuing
assumption of its validity" [italics added].
Some of the indicators he reported observing were disabled
individuals typing independently or with minimal physical contact with
the facilitator; content (spelling errors, unexpected word usage, etc.)
that appeared to be unique to each individual; and facial expressions or
other signs that the individual understood the communication. He also
noted that facilitators often could not tell who was doing the spelling
and that they could be influencing the FC in subtle ways without their
awareness, and that this could be a problem. Finally, on the basis of
his uncontrolled observations and the reports of Crossley and other
facilitators, Biklen decided that autism had to be redefined as a
problem not of cognition or affect, but of voluntary motor control. He
returned from Australia to establish the Facilitated Communication
Institute (FCI) at Syracuse University, and the North American FC
movement was underway.
The Movement Takes Off
Word of FC spread quickly with the help of several media reports of FC
"miracles." The rate of information exchange increased geometrically,
feeding the system and driving it forward. FC newsletters, conferences,
and support networks contributed to the spread of astonishing success
stories, along with examples of prose and poetry attributed to FC
authors. The Syracuse FCI began training new facilitators in earnest, in
workshops that lasted from a few hours to two or three days. At least
two New England universities became satellite programs of the Syracuse
FC Institute, as did numerous other private and public agencies that
provided training and support for facilitators. Initiates (parents,
paraprofessionals, and professionals in several disciplines) were often
told that the technique was simple and required no special training.
They were urged to train others, and to go out and try FC with disabled
individuals. Thousands did. Soon FC was being heralded as a means of
"empowering" individuals with severe disabilities to make their own
decisions and participate fully in society. FC was rapidly becoming the
Politically Correct treatment of choice.
Soon after publication of Biklen's article, special education
personnel and parents around Syracuse, then throughout the U.S. and
Canada, adopted FC enthusiastically. Scores of children were placed in
regular classrooms doing grade-level academic work with "facilitation."
Decisions about the lives of adults with severe disabilities--living
arrangements, medical and other treatments, use of hearing aids, and so
on--were based on "facilitated" messages without any attempt to verify
authorship objectively. In many cases FC supplanted other communication
modes, including vocal speech and augmentative communication systems,
that do not require another person for message creation. Some
psychologists, speech pathologists, and others began giving I.Q. and
other standardized tests with "facilitation," changing diagnoses and
program recommendations in accordance with the "facilitated" results.
Suddenly "retarded" individuals were proclaimed to have average or
above-average intelligence. "Facilitated" counseling and psychotherapy
were promoted to help FC users deal with personal problems. Colleges and
universities offered courses on FC. Millions of tax dollars were
invested in promoting its widespread adoption, with little objective
evaluation of its validity or efficacy.
Enter Psi, Exit Science
Not surprisingly, the experience of accomplishing a breakthrough and
being part of a movement was a heady experience for many facilitators.
Some, however, reported wondering all along whether the words being
produced through FC were really coming from their disabled partners.
Others who had serious doubts about the method from the outset found
themselves under considerable pressure from parents, peers, and
employers to adopt the method wholesale and without question. Reports
that facilitators' private thoughts were being expressed through FC led
some to conclude that individuals with autism must have telepathy--a
view espoused by a professor of special education at the University of
Wisconsin, among others.
Facilitators were also imbued, explicitly and implicitly, with a
strong ideology that presents dilemmas for many who want to know who is
really communicating in FC. Some components of the ideology include:
- Assume competence.
- Don't test.
- Prevent errors.
- Expect remarkable revelations in the form of hidden skills as well
as sensitive personal information.
- Use circumstantial, subjective data to validate authorship.
- Avoid objective scrutiny.
- Emphasize "facilitated" over spoken or other communications.
Contradictory evidence from the controlled evaluations that had been
conducted in Australia and those that emerged later in the U.S. were
mentioned rarely, if at all, in FC training materials and newsletters.
When that evidence was mentioned it was to criticize the evaluation
methods and the people who employed them, and to explain away the
results by saying essentially that FC could not be tested. In short,
FC's validity was to be accepted largely on faith. With this, science
was abandoned.
Concurrently Biklen, Crossley, and their colleagues published
further reports of qualitative studies suggesting that FC was highly
effective in eliciting unexpected literacy skills from large proportions
of individuals with severe autism, mental retardation, and other
disorders. Many of these individuals had received little instruction in
reading and spelling, or if instruction had been attempted many had not
appeared to learn very much. How, then, had they developed age-level or
even precocious literacy skills? According to Biklen they acquired these
skills from watching television, seeing their siblings do homework, and
simply being exposed to words pervading the environment. Or perhaps some
had actually been learning from instruction all along, but because their
speech was limited they could not demonstrate what they learned.
How did they verify their claims? Biklen and his colleagues used
participant observation and other methods employed by anthropologists,
sociologists, and educators in field studies of cultures and social
systems. The research was strictly descriptive, not experimental, and
employed no objective measurement or procedures to minimize observer
bias. Despite their acknowledgement of the real possibility of
facilitator influence in FC, these studies did not control that critical
variable.
Late in 1991 a few parents of students at the New England Center for
Autism, where I serve as Director of Research, began pressing our
program to adopt FC. They asked us to make rather drastic changes in
their childrens' lives on the assumption that messages produced with FC
represented the childrens' true wishes and competencies. Some were angry
when we decided instead to use it only under conditions of a small-scale
experimental study employing the kind of objective evaluation methods
that we try to apply to all techniques. At that time we could find
nothing about FC in the research literature, so we consulted respected
colleagues around the country. Some (in California, surprisingly enough)
had not heard of it yet. Others invoked a Ouija board analogy or Clever
Hans effect, and suggested that FC would be a short-lived fad. None knew
of any objective evidence about FC. To our chagrin, we also encountered
individuals with scientific training who were promoting the use of FC
without considering the fundamental question about authorship.
The Sexual Abuse Component
The real possibility that "facilitated" words were those of the
facilitators was not a cause for much concern as long as the process
seemed benevolent. Few wished to throw a wet blanket on the euphoria
created by reports of a breakthrough. But almost from the beginning,
strange things began to happen: Some FC messages said--or were
interpreted by facilitators to say--that disabled FC users had been
abused by family members or caregivers. Often the abuse alleged was
sexual, and many allegations contained extensive, explicit, pornographic
details.
So many social movements have a sexual component in them, and FC is
not different. Production of sex abuse allegations usually set in motion
an inexorable chain of events. Beliefs about FC, the complexities
inherent in the method, and the fact that the alleged victim may be seen
as particularly vulnerable because he or she is disabled, now began to
interact with the zealous pursuit that seems to typify investigations of
sex abuse allegations. School or program administrators were notified,
who in turn called in representatives of social services and law
enforcement agencies. If the accused was a family member with whom the
FC user resided, that person was either required to leave the home or
the FC user was placed in foster care. If a parent was accused, both
parents often faced criminal charges, one for perpetrating the alleged
abuse, the other for knowing about it and failing to act. Often actions
were initiated by social service workers to terminate parental custody
or guardianship. If the accused was a school or program employee, they
may have been suspended from their job or even fired. A long and trying
ordeal was virtually guaranteed for all involved. An investigation
began. Police interrogated the accused, and questioned the alleged
victim through their facilitator. Other evidence was sought in the
results of medical and psychological examinations of the alleged victim,
and interviews with others who may have had information about the
alleged events. A presumably independent facilitator was sometimes
called in to try to corroborate the allegation, introducing another
complexity: There appear to be no established safeguards or objective
criteria for ensuring that independent facilitators in fact have no
access to information about cases, nor for deciding what constitutes
corroborating "facilitated" content.
False allegations have devastating emotional and financial effects on
the accused and their families, but leaving individuals in situations in
which they may be abused jeopardizes their physical and emotional
welfare. It would seem that extreme caution and stringent rules of
evidence should apply. A number of cases have arisen in which the only
evidence was a "facilitated" allegation, although there have also been
reports of cases in which corroborating evidence or confessions were
obtained. When an allegation is made through FC, two separate but
related questions must be addressed: Who made the allegation, and did
the alleged events actually occur? Some courts and investigative bodies
in Australia, the U.S., and Canada have decided that the first question
must be answered by controlled testing of FC under conditions where
independent observers can verify when the facilitator does and does not
have information necessary to produce communications. If the FC user
does not convey information accurately and reliably under those
conditions, and there is no other solid evidence, the legal action is
usually terminated. That has been the outcome of testing in every case
of which I am aware, but by the time that determination has been made
the accused have been traumatized for the better part of a year and have
spent tens of thousands of dollars defending themselves. Solid
corroborating evidence would certainly answer the second question--whether
abuse occurred--but it does not follow logically that it answers
the question about who authored the "facilitated" allegation.
Unfortunately, it wasn't until a number of false "facilitated"
allegations of sexual abuse came to light that FC began to be
scrutinized closely. As issues about the validity and reliability of FC
were addressed in courtrooms all over the U.S., critical and questioning
stories appeared in the print and electronic media. Concurrently (though
somewhat slowly), results from a rapidly growing number of controlled
evaluations began to be disseminated, and a few more skeptical voices
were raised.
How To Test FC
The rationale for conducting controlled observations to determine
authorship in FC is straightforward: If the disabled FC user is actually
the source of the messages, then accurate and appropriate messages
should be produced on virtually every opportunity when the facilitator
has no knowledge of the expected message. Some controlled evaluations of
FC have been mandated by legal questions like those just described, but
a number were carried out by clinicians, researchers, and program
administrators who simply wanted an objective empirical basis for making
decisions about FC. Even James "The Amazing" Randi was consulted in the
early stages of testing, some calling him in to make sure fraud and
trickery was not involved, others because they genuinely wondered if
psychic power was the cause. Randi's skepticism of the phenomenon was
not welcomed by FC supporters. The first major American study was
conducted by psychologist Douglas Wheeler and colleagues at the O. D.
Heck Developmental Center in Schenectady, NY, who wanted objective
evidence to convince skeptics that FC was valid.
How do you do a controlled study of FC? Recently I analyzed reports
of 17 evaluations of FC that have appeared or have been accepted for
publication in peer-reviewed professional journals, and eight presented
at scientific conferences. The common and critical ingredients were:
- Consent for participation.
- Objective measures, i.e., use of independent, nonparticipating
observers or judges, "blind" to the conditions in effect, who recorded
data and/or evaluated the accuracy of FC output.
- Maintenance of physical and emotional support by the facilitator.
- With only a few exceptions, facilitator/FC user dyads who had been
working together with apparent success for a considerable period before
formal evaluations were conducted.
- Familiar, common communication contexts (e.g., typical academic
and language-development activities, discussing everyday events, naming
or describing familiar pictures or objects).
- Establishment of apparently successful FC in the evaluation
context.
- Control of information available to the facilitator.
The necessary control was established in a number of ways. In some
studies, facilitators were simply asked to look at their partner and not
the letter display, or were actually screened from the letter display.
These kinds of tests were suggested by the observation that many
facilitators focus intently on the letters while their partners look at
the letters infrequently, if at all. Others presented visual stimuli
like pictures, objects, or printed materials only to the FC user while
the facilitator was screened from seeing them. Alternatively, spoken
questions were presented only to the FC user while their facilitator
wore earplugs or headphones playing masking noise. Several evaluations
used a procedure described as "message passing:" FC users were engaged
in some familiar activities in the absence of facilitators, who then
used FC to solicit descriptions of the activities. A couple of
evaluations involved independent facilitators, unfamiliar with the FC
user, who solicited information that was presumably unknown to the
facilitator (e.g., the FC user's favorite food, a recent event in their
life, names of family members, etc.).
The Results
The most telling evaluations used double-blind procedures, in which
facilitators and their partners saw or heard different items on some
trials, and the same item on other trials. Neither could tell what
information their partner was receiving. Responses that corresponded to
information presented to the facilitator and not to their partner
provided direct evidence that facilitators were controlling those FC
productions. Multiple tasks and control procedures were used by several
investigators. Facilitators in all evaluations had been trained by
leading proponents of FC, or by others who had had such training. They
seemed representative of the general population of facilitators,
including parents, paraprofessionals, teachers, speech pathologists, and
other human service workers. The sample of FC users in these evaluations
also appeared representative, comprising a total of 194 children and
adults with autism, mental retardation, cerebral palsy, and related
disorders.
None of these controlled evaluations produced compelling evidence
that FC enabled individuals with disabilities to demonstrate unexpected
literacy and communication skills, free of the facilitator's influence.
Many messages were produced over numerous trials and sessions, but the
vast majority were accurate and appropriate to context only when the
facilitator knew what was to be produced. The strong inference is that
facilitators authored most messages, although most reported that they
were unaware of doing so. Sixteen evaluations found no evidence
whatsoever of valid productions. A total of 23 individuals with various
disabilities in nine different evaluations made accurate responses on
some occasions when their facilitators did not know the answers, but
most of those productions were commensurate with or less advanced than
the individuals' documented skills without FC. That is, they were
primarily single words and an occasional short phrase, produced on some
trials by individuals whose vocal or signed communication exceeded that
level, some of whom had documented reading skills before they were
introduced to FC. For most of these individuals, there was clear
evidence that on many other trials their facilitators controlled the
productions. The controlled evaluations also demonstrated that most
facilitators simply could not tell when and how much they were cueing
their partners, emphasizing the importance of systematic, controlled
observations for identifying the source of "facilitated" messages. The
legal, ethical, and practical implications of these findings are obvious
and serious. Together with the legal cases and critical media reports,
they have made it a little more acceptable to voice skepticism about FC.
The Proponents Respond: Parallels With Psychics
Proponents of FC have criticized the controlled evaluations on several
counts. The parallels of their responses to those received by James
Randi when he tests psychics are startling. FC supporters, for example,
argue that incorrect answers were due to lack of confidence, anxiety, or
resistance on the part of FC users, who "freeze up" or become offended
when challenged to prove their competence. Likewise, psychics claim they
cannot perform in front of video cameras or in the presence of skeptics
who make them anxious. In the case of FC, if this were true--if testing
per se destroyed the FC process--participants in the controlled
evaluations would not have responded at all, or would have produced
inaccurate responses throughout, not just when their facilitators did
not know the answers. Instead, many accurate words, descriptions, and
other responses were produced, but for the most part only when
facilitators knew what they were supposed to be.
Additionally, many evaluations took place in familiar surroundings in
which individuals had engaged in FC for numerous sessions, with their
regular facilitators and letter displays. Sessions typically were not
conducted or were terminated if there were any signs of distress or
unwillingness to continue. Few refusals were reported. Participants in
most evaluations completed numerous trials and sessions over extended
periods of time. Most appeared cooperative, even enthusiastic,
throughout. Several evaluations were conducted in the context of typical
FC sessions, using the same types of materials and questions to which
participants had appeared to respond successfully. Questions were no
more confrontational or intrusive (perhaps less so) than those often
asked in regular FC sessions; in fact, many tasks were identical to
those recommended for FC training, except that conditions were arranged
so that facilitators could not know all the expected responses. Finally,
if FC users simply become too anxious to communicate when challenged,
one has to wonder how they are managing to perform in regular academic
classrooms, on I.Q. and other tests, in front of TV cameras, and before
large audiences at FC meetings. And how can they give "facilitated"
testimony, under questioning by judges and attorneys (which is anxiety
producing for anyone), as prosecutors in some sexual abuse allegation
cases are now arguing is their right?
Another criticism of the controlled evaluations is that the
facilitators were not familiar with their partners, were inadequately
trained, or did not provide appropriate "facilitation." That is simply
not true. As indicated in the summary above, the FC users' preferred
facilitators participated with them in most evaluations. The only
exceptions were two studies that assessed initial responsiveness to FC
with facilitators and FC users who were "beginners" when the evaluation
started, and a couple of legal cases in which unfamiliar facilitators
were involved (who nonetheless "facilitated" successfully with the FC
users before controlled testing began). Many facilitators were trained
by leading proponents of FC. Most were encouraged to provide whatever
physical and emotional support they wished during the evaluation. If
they were not "facilitating" properly, few understandable communications
would have been produced. Quite the opposite was true. There is a
peculiar irony in this criticism, however, since proponents offer no
specific guidelines or standards as to what constitutes sufficient
training and experience for facilitators. Some facilitators have started
using the method after reading an article, watching a videotape, or
attending a brief workshop. When we began to take a look at FC at the
New England Center for Autism, for example, our three speech-language
pathologists were trained by Biklen in a two-day workshop. That appeared
to be the norm at that time (late 1991). A further contradiction is that
there are reports throughout the descriptive literature on FC that
facilitators who were complete strangers had some individuals with
severe disabilities "facilitating" sentences (more, in some cases) in
their very first session.
Implausibilities and Inconsistencies
An oft-cited criticism of the controlled evaluations is that they
required FC users to perform confrontational naming tasks, which
proponents consider inappropriate because individuals with autism have
global "word-finding" problems. This argument is implausible for several
reasons. First, many evaluations did not require FC users to spell
specific names; descriptions, copying, multiple-choice options, yes/no
responses, and answers to open-ended questions were just some of the
other kinds of responses solicited. Second, there is no solid evidence
that such problems are exhibited by individuals with autism. It can be
difficult to distinguish words that an individual presumably knows but
cannot produce from words that they simply do not know, even with
individuals who at one time had well-developed language (e.g.,
neurologic patients). This would seem to be even more difficult with
individuals with autism. Even if this rationalization applied to
individuals with autism, what accounts for the results with the many FC
users who did not have autism? Additionally, at least three studies
documented spontaneous oral naming responses by FC users with autism
that were more accurate than their "facilitated" responses. That
certainly goes against the "word-finding" hypothesis for those
individuals.
Some FC proponents attribute negative findings to the supposition
that most FC users are not experienced with the kinds of tasks presented
to them in the controlled tests. This criticism is especially puzzling.
By law, the skills of individuals with special needs must be evaluated
on a regular basis, so most FC users have probably had a great deal of
test experience. The tasks used in most controlled evaluations were like
those used to teach and test academic and language skills in classrooms
and training programs everywhere. In fact, many were precisely the kinds
of activities that are recommended for FC training, on which the FC
users in the controlled evaluations had been reported to perform very
well. Again, if inexperience with the tasks were a plausible
explanation, FC users should perform equally poorly when their
facilitators did and did not know the expected answers. That was not the
case in the controlled evaluations.
Finally, FC proponents are inconsistent in claiming that controlled
testing undermines the FC user's confidence, while in the next breath
they are quick to tout reports that some attempts at controlled
evaluations have produced evidence of FC's validity. In other words,
when the data contradict their claims, experiments are not valid; when
the data support their claims, experiments are useful. A report from
Australia (referred to as the IDRP report) said that three individuals
with disabilities succeeded in "facilitating" the name of a gift they
were given in the absence of their facilitators, but one was said to
type his responses independently, without FC. The report provided no
background information about the individuals, no details about the
procedures, and described only one controlled trial completed by each
individual. Another exercise described in a letter to the editor of a
speech disorders journal claimed that four of five students thought to
have severe language delays performed remarkably better with FC than
without on a test of matching pictures to spoken words. The facilitator
wore headphones but was not screened visually from the nearby examiner
who was speaking the words, and no expressive communication was required
of the FC users. At best, these exercises must be considered
inconclusive, but they have been cited widely by proponents as
scientific validations of FC. The contradiction inherent in arguing that
controlled testing interferes with FC while endorsing exercises like
these seems lost on them. The clear implication is that tests that
appear to produce evidence supporting beliefs about FC are good, and
tests that fail to do so are bad.
Silent Skeptics
If FC is so obviously not the mental miracle supporters claim it is, why
does the movement continue to grow? Why hasn't the scientific community
made a significant public statement against FC? A number of variables
probably account for the initial and continuing reluctance of many
skeptics to speak up. First, scientists in general are cautious about
drawing conclusions without data. When FC first hit the disability
community in North America, there were no objective data to be had. A
rejoinder to Biklen's first report by Australian psychologists Robert
Cummins and Margot Prior was submitted to the Harvard Educational
Review early in 1991. Their paper summarized the results of controlled
tests of the validity of FC and the legal and ethical problems it had
engendered in Australia. It was not published until late summer 1992,
and by that time the FC movement already had considerable momentum. Even
then, many skeptics withheld judgment on the basis that the Australian
data were limited. This was essentially our reasoning at the New England
Center for Autism--that some individuals with autism might write or type
better than they could speak (we knew a few), and that if there were
some merit to the claims about FC, it would be revealed through careful
research using objective methodology.
At the same time, however, we sensed something ominous in the
rapidity and zeal with which FC was being applied, the resistance to
critical scrutiny, and the antiscience stance of many adherents. Even as
the dark side of the FC story began to unfold, relatively few in
developmental disabilities who knew how to test the claims about FC
experimentally wanted to get involved, perhaps thinking that the best
response was to continue to do sound research in their own areas. Others
did not to want to be seen as naysayers or debunkers.
Cummins and Prior, both with long histories of involvement in
treatment and research in developmental disabilities, were among the
first in Victoria to go public with their concerns about FC. Their
expressions of skepticism and calls for caution were met with hostility
and personal attacks from FC proponents in Australia, a scenario that
has repeated itself in the U.S. That suggests another variable, in my
opinion one of the most potent: It was (is) not Politically Correct in
many circles to suggest that FC might not be all it appears, or even to
call for objective evaluation to determine if it is. Those who do are
likely to be labelled heretics, oppressors of the disabled, inhumane,
negative, jealous of others' discoveries, "dinosaurs" who cannot accept
new ideas, and out for financial gain.
The FC Future
Needless to say, considerable attention and acclaim have accrued to the
leaders of the FC movement, but as the data and the harms have mounted,
so has the criticism. Recent months have seen a marked shift in media
coverage from the glowing reports of miracles that made almost no
mention of objective evidence (e.g., PrimeTime Live) to stories about
families for whom FC has been anything but a miracle. A documentary on
the PBS investigative news program, Frontline, honed in on the
implausibility and lack of empirical support for Biklen's initial
claims, along with the emerging evidence from experimental evaluations
showing overwhelmingly that most FC is facilitator communication.
The public position of Syracuse University officials appears to be
that Professor Biklen's notions are simply provoking the furor and
resistance that all radical new ideas encounter. Perhaps that is the
case; time and objective data will tell. Time will most certainly be
required for the legal system to do its part in determining the future
of the FC movement. A number of cases involving "facilitated" sexual
abuse allegations are in process at this writing. To my knowledge, there
has been one conviction so far. Several individuals and families who
have been cleared of false allegations have filed damage countersuits
against the facilitators, school and program administrators, and social
service agencies involved. On January 10, 1994 a civil suit was filed in
federal District Court for the northern district of New York seeking $10
million in damages on behalf of a family who were among the first
victims of FC allegations in the U.S. Among the ten defendants are
Douglas Biklen and Syracuse University.
Finally, if FC is not a mental miracle, is it sleight of hand? By
this I do not mean there is intentional deceit on the part of the
facilitators. Far from it. Most are genuine, honest, caring individuals
who wish the best for their charges. Herein lies an explanation. The
power of a belief system to direct thought and action is overwhelming. A
full and complete explanation for the FC phenomenon is still
forthcoming, but clearly there are parallels with the ideomotor
responses that direct dowsing sticks and the Ouija board. As the
facilitator gently directs the hand to begin typing, letters are formed
into words and words into sentences. Just as with the Ouija board where
elaborate thoughts seem to be generated out of thin air while both
parties consciously try not to move the piece across the board, the
facilitators do not appear to be conscious that it is them generating
the communication. Even with the autistic child looking elsewhere, or
not looking at all (eyes closed), the hand is still rapidly pecking out
letters as if it were a miracle. Unfortunately there are no miracles in
mental health. All of us wish FC were true, but the facts simply do not
allow scientists and critical thinkers to replace knowledge with wish.
Bibliography
- Biklen, D. (1990) Communication unbound: Autism and praxis. Harvard
Educational Review, 60, 291-315.
- Biklen, D. (1992). Autism orthodoxy versus free speech: A reply to
Cummins and Prior. Harvard Educational Review, 62, 242-256.
- Biklen, D. (1993). Communication unbound: How facilitated communication
is challenging traditional views of autism and ability/disability.
New York: Teachers College Press.
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development of Facilitated Communication Training. American Journal
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