Facilitated Communication: The Fad that Will Not Die

Many readers will remember facilitated communication (FC). Back in the early 1990s, a new treatment came rushing onto the scene making promises that were enormously attractive to parents of children with autism. Proponents of FC claimed that many people diagnosed with autism were actually suffering from a physical rather than a cognitive disability. Trapped inside their faulty bodies were high functioning—and in some cases exceptionally intelligent—people. All that was required to free the person inside was to create a communication pathway.

That pathway turned out to be someone else’s guiding hand. Equipped with a keyboard and a facilitator who supported and steadied the communicator’s hand, children and adults who had never spoken a word began to type out full sentences and, in some cases, poetry and novels. Many psychologists and special education professionals were so taken with the results that they began to question their basic understanding of autism. The media quickly seized on the phenomena, reporting heartwarming stories of recovery from the prison of disability. Word spread rapidly, creating a strong demand for training, facilitators, and keyboards.

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Then things turned ugly. Some of the messages typed out by communicators included serious accusations of child sexual abuse. Judges ordered parents removed from their homes, and children were placed in protective care—all based on the testimony of previously mute children and adults with autism who were now using FC. Suddenly it became very important to determine who was doing the typing—the person with autism or the typically functioning facilitator. Shockingly, the question of authorship had never been examined. Parents and practitioners were genuinely convinced FC worked, but no one had bothered to perform the necessary tests to show who was responsible for the messages being typed out. The promise of this mode of communication was so attractive and the results so welcome that FC had been adopted by parents and schools all over the country without anyone bothering to put it to the test. Now that serious criminal charges were being made through FC, scientific tests were urgently needed.

Once tests were conducted, the results could not have been clearer. In simple picture identification studies where communicators and facilitators were sometimes shown the same object and sometimes shown different objects, answers were only correct when the facilitator and the communicator saw the same thing. All the evidence pointed to facilitators controlling the typing.

One important study was done at the O.D. Heck Developmental Center in Schenectady, New York. The center had adopted FC and was using it with many of its students with autism and other developmental disorders. After devising a double-blind test, the staff found that in hundreds of trials where a correct response was possible, not a single correct response was observed. The results for FC were crushingly negative, despite the fact that students worked under the most favorable conditions when they and their facilitators were comfortable and ready to be tested.

Suddenly the tide shifted. A series of peer-reviewed studies began to appear in the mid-1990s, all showing the same thing. Facilitators unknowingly controlled the FC typing in an Ouija board-like phenomenon. It was the ideomotor effect all over again. Defendants in the child abuse cases were found not guilty based on the unreliability of the testimony against them, and many professional organizations issued policy statements indicating that FC was not supported by evidence and should not be used. The FC drama was covered in Skeptical Inquirer, and a very influential PBS Frontline program “Prisoners of Silence” documented the rise and fall of FC. “Prisoners of Silence” quickly became a standard component of many introductory psychology classes, as a dramatic example of the importance of critical thinking and the power of science to answer important questions.

The Zombie Fad

That should have been that. If ever a treatment was unequivocally discredited, FC was it. Most scientifically-minded practitioners assumed that FC had been completely vanquished. Nothing could be further from the truth. An important article published in Evidence Based Communication Assessment and Intervention in February makes clear that FC never died. It was simply repackaged to make it easier to promote after the debacle of the 1990s.^[2]

The authors of the article, Scott O. Lilienfeld, Julia Marshall, James T. Todd, and Howard C. Shane, give a detailed account of what happened to FC after its rise and (apparent) fall in the 1990s. Summarizing the results of several surveys of parents and professionals they find:

… FC use remains widespread in many quarters, with a range of current use post 2000 ranging from 1.6% to 9.8% of children with autism. The findings of Price (2013) further suggest that many students who specialize in communication disorders believe FC to be effective for autism.^[3]

What? How did this happen?

Lilienfeld and his colleagues show that, while those convinced by the data moved on to other therapies, the proponents of FC never gave up. Douglas Biklen of Syracuse University is the most prominent supporter of FC in the United States. His Facilitated Communication Institute at Syracuse has been renamed Institute on Communication and Inclusion, and in 2012 it received a $500,000 John B. Hussman Foundation grant to support FC research, training, and dissemination.^[4] The University of New Hampshire’s Institute on Disability has been a loyal supporter of FC since the 1990s, and regularly sponsors meetings of an FC “skill builders” group.

A Fad by Any Other Name

As suggested by the removal of the phrase facilitated communication from title of the Syracuse institute, FC’s survival was helped by renaming and repackaging an old product. FC is now commonly called “supported typing” or “progressive kinesthetic feedback,” and a new variation on FC called “rapid prompting” or “informative pointing” is gaining in popularity.

Saved By Typing is an organization that promotes facilitated communication through this YouTube channel, a Facebook page, and a website.

The Media Campaign

Films. In addition, FC has been promoted through a remarkably well orchestrated media campaign designed around individual success stories. In 2004, CNN produced and aired a documentary entitled Autism is a World. Douglas Biklen was a co-producer of the film, which featured the life of Sue Rubin, a woman with autism who, with the aid of a facilitator, attended Whittier College.^[5] Unfortunately, Rubin is never shown using a keyboard independently. She types with a facilitator guiding her arm, or she types while a facilitator holds the keyboard floating in the air—making it impossible to rule out facilitator influence. Although she is never shown typing on her own and all of her dialogue is narrated by the actress Julianna Margulies, Rubin was given the writing credit for Autism is a World, which was nominated for an Academy Award in the short documentary category.

Biklen followed the success of Autism is a World with a feature-length movie Wretches and Jabberers in 2011. This film focused on two star communicators, rather than just one—Larry Bissonnette, an artist and advocate, and Tracy Thresher, an advocate—both diagnosed with autism. The film received many positive reviews from credulous writers, but a more skeptical review can be found here. Bissonette and Thresher, accompanied by their facilitators, have been touring with the film in the years since its release. Most recently they were at Princeton University in March. At these public appearances, the men typically sit at a table on stage with their facilitators at their sides typing on computers that are connected to projection systems. Once a sentence or a short paragraph has been typed, the computer speaks the words through a sound system. The YouTube video below shows a question and answer session at Chapman University in November of 2011. The film has been edited to eliminate much of the typing time, but in those moments when the men can be seen typing, it is clear that their facilitators are prompting them by touching an arm or shoulder as they type.

Books. Inspirational books describing people who have overcome autism have been popular since the condition was first identified, and despite the attacks of the 1990s, books praising FC have kept coming. In 2005, Biklen wrote Autism and the Myth of the Person Alone, published by New York University Press. The book was based on the contributions of people with autism who purportedly typed their own sections of the book. Both Sue Rubin and Larry Bissonette are credited with chapters.

A more typical example of an inspirational story is the 2011 book I'm So Glad You Found Me in Here by Matthew and Nancy Hobson, which recounts Matthew’s success with FC. According the book’s Facebook page, Matt graduated from Indiana University-Purdue University of Indianapolis in May of 2011 with a degree in general studies. Nonetheless, photos of Matt and his mother, as well as this video, show her using the classic full hand-over-hand FC technique, and despite typing with a single finger (non-touch typing), Matt does not always appear to be looking at the keys—a strong indicator that he is not the true author of the words attributed to him.

Academic Support & More Sexual Abuse Allegations

FC continues to have the authority of Syracuse and the University of New Hampshire behind it, but Lilienfeld and colleagues point out that FC has also begun to receive favorable mentions in several academic books and journals. They report that “two dozen articles and chapters that endorse FC as a valid intervention have appeared in academic outlets since 2005, at least 15 of them peer-reviewed.”^[6] One of the most aggressively worded of these is an article by Anna Stubblefield published in the peer-reviewed journal, Disabilities Studies Quarterly. It equates opposition to FC with hate speech. By that definition, the article you are reading now is an example of hate speech.

But Stubblefield’s interest in the subject is not just academic. She is a Rutgers University philosophy professor (now reportedly suspended without pay) who is facing criminal and civil charges that she sexually assaulted a 33-year-old man with cerebral palsy.^[7] For several years Stubblefield communicated with the man, known as D.J., using FC, and, according to his family, took D.J. to conferences where she acted as facilitator for presentations that he gave. She is currently charged with having repeatedly sexually assaulted D.J. in 2011. In a tragic twist on the sexual abuse allegations of the 1990s, at center of the case against Stubblefield is the simple question: Given that D.J. communicated with her using FC—and Stubblefield was his facilitator—did he actually give consent? The case is scheduled to go to trial later this year.

New Waves of Unreason

Most often when skeptics encounter everyday examples of claptrap, the causes are clear. Those who believe in ghosts, alien visitation, the evil eye, or the presumed perils of genetically modified foods have been socialized to these ideas, and they are either ignorant or dismissive of evidence, logic, and reason. But for some kinds of claptrap, more than the ordinary forces are at play. FC is a fad that should have died out a long time ago, and its resurrection seems to have been very deliberately orchestrated. At least three movements appear to help explain FCs persistence.

First, is a very effective advertising campaign on the part of its original proponents—Douglas Biklen being the most prominent among them. Biklen’s academic reputation could not have been helped by the FC episode, giving him more than sufficient reason to fight back. At the very least, after the revelations of the 1990s, the word “controversial” was forever attached to news reports about FC. Having lost the scientific battle, Biklen and other FC proponents largely sidestepped the academic challenge in favor of an appeal directly to parents and family members—those most hungry for good news. Using a slightly repackaged product and the modern medium of film, Biklen has created an evocative myth of recovery from isolation. It is a nice story, and we can hardly blame many for wanting to believe it. But the evidence—or lack of it—suggests that Biklen’s documentaries portray fictional stories rather than real ones.

Second, FC’s comeback seems to be fueled in part by a political movement within disabilities studies. In Autism the Myth of the Person Alone, Biklen advocates for a respect-based approach that grants everyone the presumption of competence. Fair enough. Presuming competence—at least as a starting point—seems reasonable. But eventually competence needs to be demonstrated. Presuming competence is not the same as preempting it. We do not honor people by creating a mask for them to wear.

In the process of labelling criticisms of FC as hate speech, Stubblefield dismisses the idea of intelligence as a social construct inextricably bound to language. According to her, it is unfair to use standard measures of intelligence to describe FC users—or anyone for that matter. She seems to argue the paradoxical position that, if we assume (or presume) a person has a physical disability that thwarts all cognitive testing methods, denying access to FC is both a form of oppression and a suppression of freedom of speech, despite the lack of evidence that FC is speech.

Third, FC seems to have benefited from a rising interest in qualitative rather than quantitative methods of research. A recent article by Donald N. Cardinal and Mary A. Falvey in the journal Research and Practice for Persons with Severe Disabilities heralds FC as a “successful means for people to learn to communicate effectively and independently” (abstract). But the article also acknowledges a wide gap between the results of quantitative research employing controls and the collection of numerical data and qualitative research based on narrative accounts and case studies. Both kinds of research have merit, and both often find their way into peer reviewed journals. But claims of causal relationships—such as, for example, the claim that D.J. is responsible for the typing that gave consent to his sexual activity—can only be discovered using techniques most often associated with quantitative research. Qualitative studies usually do not include control groups, random assignment, independent and dependent variables—all of the features associated with scientific inquiry.

According to Cardinal and Falvey, qualitative studies in support of FC now outnumber the earlier quantitative studies that failed to validate its effectiveness. If true, the explanation may be that the quantitative researchers took no for an answer. After several attempts, the results were clear, and they moved on to study more valuable therapies. In contrast, the true believers turned away from hard tests of cause and effect and found solace in the methods of qualitative research.

If a pill for autism could be found, all of this pseudoscience would disappear. But there is no pill. Applied Behavior Analysis (ABA), the most validated and effective treatment for autism, is onerous to administer, and, although it benefits all who receive it, ABA is not a cure. Studies show that fewer than half of children who receive ABA achieve typical age-appropriate educational levels. As long as there is no pill for autism, parents longing for a quick and more complete solution to their child’s condition will always find the promise of FC and other pseudoscientific therapies strongly appealing.

The narrative that Lilienfeld and colleagues lay out is extremely troubling. Under normal circumstances, it is difficult enough to fight the tide of pseudoscience and irrationality, but these are not normal circumstances. Here we have the strong pull of parental hopes combined with professional interests and cultural politics. And the stakes are extremely high. Advocates for FC suggest that critics are guilty of discrimination and the suppression of free speech, but without evidence that FC works, its advocates are engaged in a much more pernicious enterprise. In the interest of producing fake college graduates, they have substituted their own speech for that of the person with autism. Rather than honoring these individuals, they have erased them. Worst of all, while chasing a fantasy, the purveyors of FC have wasted years of valuable time that could have been spent on more effective educational and treatment methods. If there is a bright side to all this, it is that Lilienfeld, Marshall, Todd, and Shane have done great service by showing us how much work we have yet to do.