Uniquely Human: Laying the groundwork for belief in FC
One surprising fact about FC pseudoscience is the number of autism experts that have come to believe in it. Might there be certain ways of thinking about autism that predisposes certain experts to drink the Kool-Aid?
Consider the framework of Floortime. As I discussed in an earlier post, Floortime proponents believe that the language problems in autism boil down to a disconnect between the affective and motor systems—i.e., between intent and motor control. This is precisely the kind of brain-body disconnect that “informs” both traditional FC, which came of age in the 1990s, and newer forms of FC like Rapid Prompting and Spelling to Communicate. Might that be the reason why the official Floortime Center offers Rapid Prompting as one of its services?
And might that be the reason why Barry Prizant, whose relationship-based SCERTS model is a cousin of Floortime, has also endorsed FC, at least in certain instances?
On one hand, Prizant has not embraced the affective-motor disconnect as a general theory of autism. On the other hand, in a chapter he co-authored in Howard Shane’s The Clinical and Social Phenomenon of Facilitated Communication back in the early 1990s, he stated that a subset of individuals with autism may have such a brain-body disconnect—and, furthermore, that FC may be valid when used with this population.
Prizant’s views appear to have persisted over the years, despite the mounting evidence against FC. We see this, most recently, in the letter he wrote to the American Speech Language Hearing Association (ASHA) in opposition to ASHA’s position statement against the Rapid Prompting Method. In his letter, Prizant recounts the two days he spent with a certain group of non-speaking and minimally-speaking autistic individuals at a certain institution (the University of Virginia), who typed out “surprisingly insightful” messages on letter boards. “In no, and I mean NO instances,” Prizant tells ASHA, “were they physically or gesturally directed to specific letter targets.” (The same was true of Clever Hans, the horse who could spell words in German).
Is there something about Prizant’s take on autism that explains this gullibility?
The most recent source for Prizant’s take on autism is Uniquely Human: A Different Way of Seeing Autism, published in 2015. Here, several different themes emerge that potentially lay the groundwork for belief in FC.
1. Autism isn’t a deficit, but a difference
Consistent with his title, Prizant views autism as “a different way of seeing”, not as a disease to be cured. Nor are there any autism-specific challenges that should be addressed by systematic behavior modification techniques and therapist-centered instruction and drilling. (Prizant does not hide his contempt for Applied Behavioral Analysis, the most commonly and successfully used instructional and behavior modification intervention for autism). To the extent that autism is a disability, it is a “disability of trust”—of trusting one’s body and the world that surrounds it. Autistic individuals, purportedly, “experience the same full range of emotions as we all do.”
Prizant does acknowledge that social difficulties are central to autism. Indeed one of his twelve chapters is called “Social Understanding,” and here he discusses such difficulties as reading body language and navigating the social world. Across the book as a whole, however, Prizant spends much more time talking about problems of bodily dysregulation and sensory overload.
Collectively, Prizant’s claims about differences rather than disabilities, his emphasis on trust and dysregulation issues, and his assurances about the “full range of emotions”, point in the general direction of the “intact mind” construct that has been used to support everything from Bettleheim’s psychoanalytic therapies of half a century ago to the Facilitated Communication approaches that began several decades later.
2. Even low verbal/minimally-speaking individuals are capable of robust communication
Throughout Uniquely Human, Prizant plays up what he claims are under-appreciated, alternative modes of communication. One example is the echolalia, or echoic speech, that characterizes many individuals with autism. Prizant has long argued that echolalia can be communicative. Indeed, one reason for his partial skepticism about FC is the tendency of FC-proponents to dismiss the occasional spoken words of FC users as “merely” echoic. One has to wonder how Prizant has squared this with what he saw at the University of Virginia, where some of the minimally-speaking typers (for example this one) echo words that are clearly at odds with what they’re typing.
But in Uniquely Human Prizant reads more into echoic utterances than I’ve seen him do elsewhere. He cites, for example, a boy’s repeated cries of “That’s a piece of sponge, sponge, sponge! That’s a piece of sponge!”, a phrase the boy had first echoed in the same location a day earlier while playing with sponge bits. Prizant characterizes this as “recounting the experiences of the previous day” and “telling a story.”
Prizant also cites instances of children using people as tools—e.g., dragging a parent over to a refrigerator, which are generally considered red flags for autism—as instances of “intentional communication.” A child who lunges and grabs at her teacher’s neck is expressing a “plea for support.”
Individuals with autism, Prizant assures us, often “communicate without speaking”, sometimes having “their own language.” One boy, who develops sudden literacy at age 13 on the first day his teacher tried out a new reading program, is still “communicating mostly in gestures” at age 21. Another young adult “uses a tablet computer to communicate” (Prizant doesn’t say whether he needs a specific person to hold up the tablet or hover next to him while types).
On one hand, much of this conflicts with the dismissal by FC proponents not only of echolalia, but also of gestures and movements, as non-communicative and unintentional. On the other hand, the notion that these kids are expressing pleas for support and recounting past experiences primes Prizant’s audience—and Prizant himself—to believe that the sophisticated messages that emerge from non-speaking individuals through FC/Rapid Prompting Method/Spelling to Communicate may be authentic.
3. Autism involves a brain-body disconnect
Yes, that phenomenon that Prizant earlier proposed might affect just a subset of individuals with autism appears ever so subtly in Uniquely Human as a much more pervasive issue. Here, for example, is Prizant’s full statement about trust:
[F]or the vast majority of people on the spectrum, autism can best be understood as a disability of trust. Because of their neurological challenges, people with autism face tremendous obstacles of three kinds: trusting their body, trusting the world around them, and—most challenging of all—trusting other people.
While “trusting other people” is what’s emphasized here, “trusting their body” is what stands out to me—precisely because it doesn’t align with any of the core symptoms of autism. It reflects neither the social deficits (“other people”) nor the restrictive, repetitive behaviors, sensory sensitivities, and need for routine (“the world”). What exactly does it mean to have trouble “trusting your body”?
Prizant does not, as it were, flesh this out. But throughout Uniquely Human he sprinkles clues. He cites someone whose body “does things I can’t control”; someone whose outbursts are “completely beyond his control, or even his awareness”; and someone who climbs onto a roof because “she doesn’t feel fear in her body” and “her brain isn’t sending signals that warn that this could be dangerous.” He also cites an “aware and intelligent” boy who “did not speak due to a severe motor-speech disorder.”
Finally, he cites the Miracle Project, which was featured in the HBO documentary Autism: The Musical, both of which—though Prizant does not mention this—include students who communicate via FC.
Indeed, nowhere in Uniquely Human does Prizant say a word about any form of Facilitated Communication.
The .giveaway comes at the end, with Prizant’s recommended readings. In the “Resources by People with Autism” section, three of the eleven books were “authored” by individuals whose words are extracted via one form or another of Facilitated Communication: Carly Fleischman, Tito Mukhdopadyay (whose mother, Soma, invented the Rapid Prompting Method), and, yes, Naoki Higashida, the purported author of The Reason I Jump.
The book The Reason I Jump, of course, is the book that the movie The Reason I Jump, was based on. The movie, in turn, features two members of the group of minimal speaking Virginians that Prizant had the privilege of observing. During a scene in which one of these two individuals is prompted to type, the movie’s voiceover, based on words attributed to Naoki Higashida, explicitly dismisses her clearly intentional, echoic protests (“No more! No more!”).
What does Prizant, the pre-eminent promoter of communicative echolalia, have to say about that?
