One year ago, Vikram Jaswal et al published a study claiming to find empirical support for a method of facilitated communication known as Spelling to Communicate.1
Finally, a critique of it has been published. You’ll find it in here, in Evidence-Based Communication Assessment and Intervention.
Barry Garelick’s Out on Good Behavior: Teaching Math While Looking Over Your Shoulder (Katharine reviewed it here) is a terrific book: funny, affecting, and real. One of my favorite passages, from the Introduction and Dedication:
I want to share some advice I received from Ellen, one of my two “parole officers” whom you will meet in this book….
“Students have more faith in something they think they came up with than something the teacher tells them.”
…Some teachers have told me that they are not allowed to answer a student’s question directly. In fact, the quote from Ellen was her response to my question of why it’s acceptable for students to show other students how to do a problem, but it’s not acceptable if a teacher does so….
From time to time, however, most, if not all, teachers will answer a student’s question by telling them what they need to know in order to solve a problem. And most, if not all, teachers (myself included) feel guilty doing this, because we are taught that that’s giving away the answer and we are handing it to the student, or to put it in more educational terminology: “teaching by telling.”
The Hundred Years’ War.
I’m not sure why I didn’t see this coming years ago—except that years ago, when I first heard of Floor Time, no one was talking publicly about FC. “Years ago” was the late 1990s, and, following the 1993 Frontline exposé Prisoners of Silence, FC had gone underground. (I had thought it had been so thoroughly debunked that was gone, gone—as in gone for good).
In promoting his FC miracle cure book, J.B. Handley has been making the rounds, appearing most recently on JennyMcCarthyTV.
Phonology is not about spelling. If you don’t believe me, look for the word “spelling” in the index of a phonology textbook.
Back when my son was first diagnosed, they were miracle stories about ABA therapy, the gluten-free diet, Floor Time, and chelation. But at some point after the turn of the 21st century the narrative shifted—and now it’s all about FC. Hard on the heels of Handley’s Underestimated: An Autism Miracle, which came out last month, we have Gilpeer’s I Have Been Buried Under Years and Dust (her FCed daughter is credited as co-author), which came out last week. Gilpeer, till now a relative unknown in the world of autism advocacy, has landed a bigger publisher than Handley (William Morrow), and gushing reviews in both the Washington Post and NPR.
The first autism cure memoir of 2021 has just come out: J.B. Handley’s Underestimated: an Autism Miracle. Handley is the author of the 2018 anti-vaccine book How to End the Autism Epidemic and, back in 2005, the co-founder (with his wife) of Generation Rescue, an organization that, besides blaming childhood vaccinations for autism, has promoted scientifically discredited treatments like gluten-free diets, megavitamins, and hyperbaric oxygen therapy.
But Handley’s 2021 miracle cure book isn’t about the gluten-free diet, or the vitamin B-12 doses, or the ten fecal microbial transplants, or the “more than 100 ‘dives’” into hyperbaric oxygen chambers to which Handley has subjected his autistic, non-speaking son Jamison.
I’ve just updated my flipped-learning piece from a few years back to try to answer the question of why remote learning and working is such a miserable experience for so many of us.
Ralph Savarese’s follow up to Reasonable People: A Memoir of Autism and Adoption is the even more modestly titled See It Feelingly: Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor. Also common to both books is that much of the content derives from facilitated communication. In Reasonable People, the facilitated individual is Savarese’s adopted son, Deej; in See It Feelingly, Deej is joined by two others who communicate via FC: Tito Mukhopadhyay and Jamie Burke. Three independent communicators—people who are able to produce messages without a designated helper sitting next to them and prompting them—also make appearances: Dora Raymaker, Eugenie Belkin, and Temple Grandin.
Like Reasonable People, See it Feelingly seeks to challenge what Savarese alleges to be the dominant paradigm of autism. As the book’s publisher, Duke University Press, explains:
Beyond the University of Virginia (via Vikram Jaswal and his Eye Tracking Study), Cambridge University is also hard at work validating the latest forms of facilitated communication. I’m thinking, specifically, of Alex Woolgar, whose work (as yet unpublished) is described in detail on the International Association of Spelling as Communication (I-ASC) website.
They are an amazing group. Some are poets, novelists, or visual artists. Some have graduated from or are currently enrolled at prestigious colleges and universities such as UC Berkeley, Tulane, Oberlin and Harvard, among many others. Most are advocates, some professionally, others as just something they do on the side to give back to the community. Some have written op ed pieces in the Wall Street Journal, others have given presentations to the United Nations. Some are active in non-profit advocacy groups or lead student-run organizations on campuses. Some have shared their perspectives with medical providers, educators and architects to help these professionals understand how to better serve nonspeaking people. https://i-asc.org/an-open-letter-to-my-sons-skeptics/
And all of them compose these perspectives, advocacy statements, op ed pieces, UN presentations, novels, and poems via some form of facilitated communication. Their wrists, arms, or shoulders are held, or a letterboard is held up to them, or, at the very least, a “communication partner” sits or stands next to them and prompts them. One set of eyes is glued to the keyboard; the other set of eyes may or may not be, but an extended index finger that belongs to those eyes hovers over the letters. The moment the communication partners leave the room, all that sophisticated communication grinds to a halt. This, in a nutshell, is the problem.
Some see it differently:
As with many out-there belief systems, those espoused by proponents of Facilitated Communication contain some grains of truth.
For example, observations of motor clumsiness in autism date back to Leo Kanner and Hans Asperger—but they don’t add up to the kind of mind-body disconnect that FC proponents claim justifies FC. Similarly, the infrequent initiations of social interaction seen in individuals with autism do not add up to the kind of generalized initiation disorder that Rapid Prompting Method proponents claim justifies the RPM version of FC.
The FC-skeptics are going on the offensive: our website is now live! Largely the work of former facilitator Janyce Boynton, it’s a huge repository, with links to research papers, news stories, and critical reviews.
Check it out at https://www.facilitatedcommunication.org
I first became aware of Strange Son when I was trying to publish my own autism memoir. My agent was told that the reason we weren’t getting bites was that an autism memoir was about to come out that would dwarf all the others. The author was a huge name in autism–Portia Iversen, the co-founder of Cure Autism Now–and the book was a miracle cure memoir. Only later did I find out what the miracle was; for now, it was looking like all that publishers wanted in terms of autism memoirs were memoirs of this particular sub-subgenre (cf. Let Me Hear Your Voice and Unraveling the Mystery of Autism and Pervasive Developmental Disorder, recounting full recoveries, respectively, through ABA therapies and gluten-free diets). My agent advised me to retool my material into a non-autism non-memoir, and the result was Raising a Left-Brain Child in a Right-Brain World. The irony was that this title, chosen by my publisher, made my book sound more pseudoscientific than the miraculous autism memoirs it was distancing itself from.1
Reading Strange Son for the first time this week, I learned that there’s one additional way in which Iversen’s book connects to my own projects. It was shortly after its publication that my then-collaborator and I were awarded a Cure Autism Now Innovative Technology grant to do a pilot study of my software program. And it is shortly into Strange Son that we meet, at a Cure Autism Now Innovative Technology conference, one of the book’s protagonists. The person in question is Tito Mukhopadhyay, and, brought over to the U.S. from India via Iversen and CAN, he’s making his first appearance—as the conference’s keynote speaker.