The film asks, “What if they’ve been wrong, about every single one of them? What if they’re all…brilliant?” But Amy Lutz argues that we must turn to objective science, not slickly edited documentary films, to test the agency of people with autism using facilitated communication.
By Amy Lutz
“What if they’ve been wrong, about every single one of them? What if they’re all…brilliant?”
So opens Spellers, a new documentary about an old intervention: facilitated communication (FC). Co-produced by Jenny McCarthy and Generation Rescue founder J.B. Handley, among others, the film is based on Handley’s book, Underestimated, about how he allegedly tapped into the previously unrecognized intelligence of his severely autistic son Jamie through the use of Spelling to Communicate (S2C) – which is an FC variant in which minimally- or non-verbal people previously considered profoundly cognitively impaired spell out sophisticated messages on a letter board held by a nondisabled facilitator.
Not that you would know it by watching Spellers, which never mentions either the words “facilitated communication” or the dozens of controlled studies that debunked it a few years after it was imported to the U.S. from Australia in 1989. The evidence was overwhelming: one review summarized, “In the 19 well-controlled studies of FC performed prior to 1999, the number of successful validations of FC was 0 out of 183” (Lilienfeld, 2015). Zero. Not even a million-dollar prize offered by the famous skeptic James Randi could produce a single validated demonstration of FC. Every relevant professional organization has issued a position statement against it, including the American Speech-Language-Hearing Association, the American Psychological Association, the American Academy of Pediatrics, and the American Association on Intellectual and Developmental Disabilities.
Spellers’ solution to this thorny problem? First, pretend this extensive literature doesn’t exist. One parent insists, “The absence of science doesn’t mean it’s not true.” Even more disingenuously, Handley describes S2C as “not fully tested” without acknowledging that both the S2C and RPM (Rapid Prompting Method, the other FC variant popular today) communities have steadfastly refused to participate in controlled testing ever since FC so spectacularly failed 30 years ago.
Second, deny that it even matters. In a telling moment, the parent quoted earlier neatly articulates what is really driving the resurgence of FC, of which Spellers is just one example: “When a child is communicating, we don’t need the science…I don’t care about the science.”
But we have to care. The confirmation of authorship is central to determining whether FC is a miraculous communication tool that, as one Spellers poster promises, proves that “everything you know about autism was wrong,” or whether it’s actually a heartbreaking form of ventriloquism that hijacks the very limited agency of profoundly cognitively impaired people. It’s hard to imagine higher stakes.
And there are several troubling scenes in Spellers that suggest the latter, even in a project doubtlessly curated to show the intervention at its most convincing: a young man with Down syndrome who points to the letterboard while looking in the opposite direction; another young man who tries to get up from the table and is restrained by his mother; a facilitator who pulls the letter board away after her autistic client clearly points out a nonsense sequence of letters and directs him to ‘make it make sense.’” (For a more technical assessment of facilitation in the film, please see this analysis by linguist Dr. Katharine Beals, https://www.facilitatedcommunication.org/blog/a-review-of-the-movie-spellers-a-documercial-for-spelling-to-communicate.)
Most problematically, a young woman named Madison is shown spelling while crying and clearly saying, “I’m sad.” And here we see the greatest harm of FC in action: Madison is obviously communicating her feelings. Her spoken words, her affect, and her behavior (she hits the table) all convey her sadness. Yet, in the very next scene, shot the next day, we find out that “Madison advocated to re-do her interview,” and watch her spell, “I was embarrassed by my scripting.” In the tortured logic of FC, all that counts is what is spelled on the letterboard, and the disabled person’s verbal (because yes, many FC users do have some rudimentary speech) and nonverbal communication is dismissed as “scripting.” So Madison’s authentic voice is muzzled, her feelings completely disregarded. I can’t think of anything more isolating or frustrating.
On the other hand, there are also examples of spelling in the film that look very credible – especially scenes that show Jamie Handley typing on a keyboard fixed on a stand. If Jamie can really type independently – with no physical support at all, no matter who is in the room – that would truly be, as Spellers declares, “revolutionary.” Importantly, however, this isn’t something that can be assessed in a slickly edited movie, but would require those controlled tests that the FC community has refused to participate in – a position I honestly don’t understand. If I thought I had accessed my son Jonah’s hidden genius with an intervention that could easily be made available to other profound autism families, you’d better believe I would be banging down the door of every psychology department in the country and demanding we be allowed to prove it.
In short, Spellers brings nothing new to the FC debate. What remains to be seen is whether mainstream media will recognize the film for what it is: FC propaganda that, in claiming success rates of 100%, spins a tantalizing fantasy in which there is no such thing as cognitive impairment, just trapped intellects waiting for a facilitator to set them free.
Amy Lutz, PhD, is a Senior Lecturer in the History and Sociology of Science at University of Pennsylvania and serves as VP of NCSA.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.