About Facilitated Communication

a note from Ralph Savarese

As I write in the book, the story of facilitated communication is indeed mixed. There is lots of evidence on both sides of the debate. What I’d ask of skeptics is to keep an open mind while investigating the phenomenon. Most people do not realize that there are now studies that confirm, or partially confirm, the technique’s efficacy with at least some non-speaking people with autism. Nor do they realize that a growing number of users have weaned themselves from their facilitators’ support and are now typing independently. Some who still require support have successfully passed message-passing protocols. Some have even learned to speak through typing! If Doug Biklen, Director of the Facilitated Communication Institute and Dean of Syracuse University’s School of Education, can post on the Institute’s web site studies that have both proven and disproven FC, then the technique’s critics ought to be able to confront the new developments I mention above. Let’s have a full and honest discussion. As part of that discussion, let’s consider new research from Morton Gernsbacher and Laurent Mottron that suggests we have been using the wrong tests to measure intelligence and “theory of mind” in people with autism. By changing the testing vehicles, research subjects were able to score much higher than before, rendering the claim of mental retardation and lack of social awareness in a vast majority of people with autism quite dubious. If scientists have fundamentally misunderstood autism, then it is not so unreasonable to imagine that FC might work—at least for some.

Readers of my book will see that Emily and I spent years teaching DJ how to be literate. Only when he “proved” his competence by pointing independently at answers on a page or blackboard did everyone—parents, teachers, aides—feel comfortable with the notion of facilitated communication. (If a person is not literate, FC can’t possibly work.) Some critics have suggested that we should have waited to publish this story after DJ had achieved independence. I would respond that independent typing can take years to accomplish and, moreover, that some might never be able to accomplish it for reasons that are still unclear. The idea of waiting for total independence at the keyboard before one accepts the communication of people with classical autism is both cruel and unfair. At the same time, one has to be very careful about facilitator influence.

I am currently working on a project that looks at DJ’s and others’ communication in a manner akin to how literary scholars determine whether a newly discovered poem might be that of a particular author—by doing statistical analyses of diction, syntax, figures of speech, etc. DJ has multiple facilitators (some fifteen) and his very idiosyncratic style remains the same across this group. So, in addition to naïve facilitators producing information that they could not have known, they produce it in a style that is consistent, though the facilitators themselves could not be more different with regard to age, gender, income level, educational background, and political convictions. Along with message-passing tests, this sort of corroboration should lend more credence to FC. If scholars in the contentious field of literary studies can come to a consensus about a new Shakespeare poem, perhaps psychologists, neurologists, special-ed teachers and the like can come to a consensus about the efficacy of facilitated communication with some non-speaking people with autism. I should say that I am also commencing a study of this idiosyncratic style itself—what I call the “neuro-poetics of autistic discourse.” A version of it shows up in many non-speaking people with autism. By emphasizing the beauty of such communication, we can all push back against the tendency to pathologize difference.

With respect to DJ’s writings on this web site and in the book, I would underscore DJ’s capacity, when pushed, to mimic neuro-typical discourse, though not completely. In his Justin Dart term paper, for instance, you can still see traces of his idiosyncratic diction: “Dart’s accomplishments are too numerous to freshly detail.” “Fresh” is one of DJ’s favorite words, and it shows up in all sorts of places and in all sorts of unexpected ways. “Dad has written a book about my fresh start,” he writes in a letter to the teachers at the special school he attended before we adopted him. When left to his own devices—that is, when simply conversing—he produces a version of DJ speak, as in his “Note to Dad”: “Yes.dearest sad dad you heard fresh self and freshly responded deserting your fears and just freed sad dear saved me. yes. yes. yes. yes.” As with any neuro-typical child who is simply conversing, we don’t pressure DJ to produce perfect English when he is typing. With his school assignments, however, we encourage him to conform to the conventions of standard English. We have marveled at his capacity to do this—he is a straight “A” language arts students—while preserving some aspects of his style. He has an uncanny ability to organize his thoughts; he understands how an argument works, and these skills only continue to improve. But there is still something there that is distinctly atypical about his communication, something irreducibly him. So, on the web site and in the book you will see a range of writings, produced at different ages and with different objectives in mind. Some things—whether poems or school assignments—have been extensively revised (by him); others have not.

Finally, I would like to address the critics who, without having read the book (they acknowledge as much), have said some particular noxious things about DJ’s experience of sexual abuse. There is no doubt that facilitated communication became enmeshed in the recovered memory controversy of the early-to-mid-1990s when claims of sexual abuse ran wild. There were FC users who typed allegations of sexual abuse that were clearly untrue, but there were also some users who typed legitimate allegations. Some of these allegations have even stood up in court. Here’s what we know about DJ: he was viciously attacked in foster care at the age of three by a much older boy whose father had sexually abused him. The authorities worried enough about sexual abuse in DJ’s attack that they specifically asked the doctor who was attending to his physical injuries to look for signs of sexual violation. Though the doctor found none, she admitted that she wasn’t at all familiar with male rape. Emily and I never once mentioned this possibility precisely because we feared planting the idea in his head. Years later, after DJ was literate and began working through his past, he reported to multiple naïve facilitators that he had been raped. If critics of FC want to imagine that Emily and I have “dirty minds,” they should talk to the psychiatrist and psychologists who treated DJ and were absolutely convinced that he had been sexual traumatized. People do a terrible injustice to defenseless kids in foster care, where sexual abuse is high, when they gratuitously and maliciously dismiss their unspeakable agony.