In the past couple years, I’ve written over a dozen articles examining facilitated communication as Biklen and Crossley define it, along with Soma’s clone, Rapid Prompting. On several occasions, I have collaborated with Dr. James Todd, a behavioral psychologist and university professor who has dedicated much of his time and effort to debunking pseudoscientific autism treatments and interventions, especially facilitated communication. Over the last twenty-plus years, FC has stuck around, and Biklen’s institute at Syracuse University has gone through PR overhauls to obfuscate FC’s bad reputation and rebrand it. It certainly makes good on its claim to be inclusive by making sure that the communication of nonverbal individuals is manipulated by their facilitators. The more the merrier, perhaps.
In the last year, facilitated communication, with its softer, gentler approach couched in the politically correct language of inclusion and neurodiversity has gained far too much ground in the online autism community. It has been given the patina of credibility by the support of Biklen’s home university and many autism bloggers and major autism organizations despite the overwhelming evidence against FC and for augmentative and alternative communication devices.
One of my primary concerns in blogging, writing, and teaching is in spreading critical thinking skills. I’ve spent nearly four years now writing against pseudoscience in the autism community, from anti-vaccine rhetoric, conspiracy theories, and sham treatments to even worse, dangerous treatments like industrial strength bleach and industrial mining chelators being given to children by their well-intentioned but woefully misinformed parents.
So, when there are some seriously dangerous treatments out there, why spend so much time on an intervention that at worst means the communication isn’t the autistic person’s? Over the years, I’ve read justifications that it’s no big deal if it’s not their genuine communication—they are happier because they are being touched and interacted with to more strenuous denials regarding the efficacy of FC. What, indeed, is the harm, other than time and money and the real chance to work on communication skills being lost to an intervention that doesn’t work? Dr. James Todd illustrates well what the harm is:
Facilitated communication proponents claim that there are scientific studies showing the efficacy of FC.
That contention is simply and entirely false. There are no methodologically
sound, peer-reviewed studies that show FC to be a useful or reliable communication
intervention. There are many showing its unreliability. This is a technique
without a scientific basis at all. There is neither a generally accepted
body of scientific evidence supporting FC as a reliable method, nor one
supporting the theory behind it. Those studies that supposedly show FC to
work are, in fact, monuments to methodological incompetence, as are the
journals that put in them in their pages.
But, I submit that anyone who willingly supports the continued use of FC has not actually read a single one of those studies. If the people supporting FC had read and analyzed them--letting the printed words wash over one is not what I mean by "reading"--they could not honestly or ethically make the claims about FC they do. Instead, they would shudder in horror at the thought that so many individuals are being deprived of authentic AAC and having their voices co-opted by the person controlling them.
Let's do a little examination of a few of the items that the Syracuse ICI website says validate FC.
One of these is Cardinal, Hanson, and Wakeham's 1996 article, "Investigation of Authorship in Facilitated Communication" in the journal Mental Retardation (now Intellectual and Developmental Disabilities). That's the one with 43 subjects and dozens of assistants that produced only 372 correct answers in 3800 trials--along with over 400 correctly spelled wrong answers. Does it concern FC supporters that the investigators gave the facilitators the list of answers in advance? Does it matter that more wrong answers than right ones is better evidence of guessing by the facilitators than authorship by the subjects? Does it seem appropriate to them that Julian Wendrow spent months in jail based on a method in which over 90% of the responses to simple questions by experienced facilitator/subject pairs were wrong?
Another is Sheehan and Matuozzi's 1996 study, "Investigation of the Validity of Facilitated Communication Through the Disclosure of Unknown Information" (also in Mental Retardation). In this study, the allegedly naive facilitators were systematically informed of what the experimenter was trying get them to type during testing. What do I mean? I mean that the facilitators who "practiced" the test material with the subjects were allowed to give feedback on accuracy directly to the facilitator: "the original facilitator who had presented the stimuli to the facilitated speaker offered encouragement, redirection, feedback, and asked clarifying questions" (p. 99). How is something so obviously and extraordinarily flawed not suspected to be a hoax on the journal editors rather than a real experiment?
Perhaps they're pinning their hopes on Weiss, Wagner, and Bauman's 1996 study, "A Validated Case Study of Facilitated Communication"--again in the journal Mental Retardation. But, if they are, why would it not bother them that only the last three of an undisclosed number of trials were reported? In the psychic business, that type of cheat is called "optional starting and stopping." Why was the 13-year-old subject of that study, who could supposedly do honor-roll level work and "lengthy writing assignments" (p. 222) with FC under the challenges and rigors school, unable to reliably answer questions appropriate for eight-year-olds even after "practicing" them with one of the experimenters? Why did the experimenters let a TV crew participate in one of the sessions? Was this a controlled experiment or was it FC propaganda? And, finally, why is no one much concerned that the procedure only seemed to start working when the experimenter who knew the answers started attending the test sessions?
I could go on. But, the other studies typically cited in FC's favor are more of
the same--or even worse. Ok, just one more. Are we really supposed
to accept that valid FC was reported in Bundschuh and Basler-Eggen's
318-page FC guidebook, Gestützte Kommunikation (FC) bei Menschen
mit schweren Kommunikationsbeeinträchtigungen? The same person who
created the test materials then served as the facilitator in the tests.
Really, how low are the standards in the world of FC? It is certainly a sad state of affairs when something they claim is so robust that hundreds of people can use it in their everyday lives nevertheless always fails when we systematically prevent the facilitator from knowing the answers. It is odd, too. Things usually work better in the lab, where we can reduce or get rid of extraneous influences, than in everyday use, where all kinds of unanticipated factors arise. I guess FC really is a miracle.
And, just to save FC supporters some typing effort, before they say that I should meet the various FC users, remember that I have not only been trained in FC, I have seen lots of it, including that of a good number of the current "FC Stars." That includes some "independent typists," not one of whom demonstrated any independent typing when I was watching up close or from afar. Not that it would matter in the way the FC community seems to believe it does. Does anyone in FC advocacy understand why even bona fide independent typing does not validate FC?
But, rather than continue in this vein--I have little confidence that most members of the FC community will accept the consensus of the scientists no matter how many studies are published showing what FC actually is and detailing how it fails; FC advocates are denialists of the highest order--let's really get down to business. Here's the challenge. A chapter in the recently published textbook, The Politics of Occupation-Centred Practice: Reflections on Occupational Engagement Across Cultures, proposes that FC is reliable enough to be used to give consent for sexual relations. Do those who speak so highly of FC have the strength of their convictions to recommend that a facilitator put a non-verbal person with autism in bed with someone, verbal or not, based on facilitated statements of interest and willingness? If not, why not? We already use FC to put people in jail.
With new parents hearing the miracle stories about how facilitated communication and rapid prompting revealed a previously-thought-to-be intellectually disabled individual as suddenly at grade level or beyond, it’s more important than ever to remain skeptical. Carl Sagan’s adage that extraordinary claims require extraordinary evidence is in play here, not because Dr. Todd and I are doubtful that nonverbal autistics can learn to communicate, but because it is so important to make sure that interventions are sound, that they do no harm, and that they protect the dignity and integrity of the individual involved.
Facilitated communication as advocated by Biklen does anything but that. We are not against teaching individuals through the use of over-the-hand, ordinary teaching methods where the prompts and cueing fade out and communication becomes independent—what we are against is co-opting of individuals’ communication and the loss of time and money as parents or school districts shell out money for facilitators—facilitators that have, too many times, accused the parents under the guise of it being the autistic’s communication of being sexually abusive. There is perhaps no more costly a lesson than the one the Wendrows learned.
As parents, educators, and advocates, we have a responsibility to use our critical thinking skills, to be aware of any potential biases we might have, and to work hard each and every day to avoid the landmines that quackery and pseudoscience continue to be in the autism community. To do less is to fail those who are counting on us to make sure they become their own best advocates. And they can’t do that if someone else is controlling the output.