(Cross-posted at FacilitatedCommunication.org).
In Happiness Falls, a new book by Angie Kim, a 20-year-old college student, home for the COVID lockdown, recounts the mystery surrounding the disappearance of her father. The last family member to see him is Eugene, one of the narrator’s brothers, a 14-year-old with a diagnosis of autism and Angelman syndrome. Eugene, consistent with his dual diagnosis, is nonspeaking and, according to standard assessments, significantly cognitively impaired. (Indeed, Angelman syndrome, even as a single diagnosis, entails significant cognitive impairment).
Angelman’s syndrome is real, but Happiness Falls is a work of fiction. Why review it here? This is, after all, a website about what science tells us about the pseudoscience of facilitated communication (FC, RPM, S2C, et al.). Fiction, of course, is neither science nor pseudoscience.So let’s start by skipping over the 372 pages of fiction to the author’s note at the back. Here are some excerpts:
[T]he communication method in the novel, PPT… [is] inspired by the two real-life therapies with which I’m most familiar and which I’ve seen in person—Rapid Prompting Method (RPM), developed by Soma Mukhopadhyay, an inspiring innovator who has made so much of today’s spelling community possible, and Spelling to Communicate (S2C)TM, developed by Elizabeth Vosseller, whose passion, brilliance, and compassion inspired many of the scenes involving PPT. (p. 379)
And:
I hope [this book] can build on the brave work of books such as Naoki Higashida’s The Reason I Jump and Ido Kedar’s Ido in Autismland and the documentary Wretches and Jabberers in interrogating and tearing down our society’s deeply ingrained assumptions that oral fluency is equivalent to intelligence. (p. 378) (See the “FC in the Media” tab on this website for reviews of these books and movies.)
Then there’s this from the book’s final section, the acknowledgments:
“I have to single out Elizabeth Vosseller for serving as an important beta reader for this book and for introducing me to the Spellerverse and the creative writing students I’ve been privileged to teach.”
Also acknowledged here are the S2C- and RPM-promoting organizations Communication First, Reach Every Voice, Unspoken Thoughts and their associated leaders, as well as Vikram Jaswal’s infamous eye-tracking study.
Given Kim’s objectives, inspirations, and “beta reader,” it should come as no surprise—but, just in case, here’s your spoiler alert!—that:
Eugene, despite his dual diagnoses of autism and Angelman’s syndrome, has no cognitive impairment whatsoever; only motor difficulties that prevent him from speaking.
What unlocks Eugene is PPT, the fictional, RPM- and S2C-inspired “communication method,” which, like RPM and S2C, involves a “therapist” holding up a letterboard and prompting her client to select letters.
By the time of Eugene’s most recent therapy session, he could answer open-ended questions like “How does the Helen Keller story make you feel?” with answers like “LUCKY I CAN SEE AND HEAR. BUT JEALOUS SHE GOT HER TEACHER AT AGE 7 AND HER FAMILY BELIEVED.” And shortly thereafter, in response to his sister’s allusion to their father’s theory about happiness—about the relativity of happiness and the need to keep expectations low—Eugene can spell “IT’S A LOT MORE COMPLICATED THAN THAT HE EXPLAINED ALL 2 ME.”
As the narrative unfolds, many of the false claims made by RPM and S2C proponents are rehashed by Elizabeth Vosseller’s proxy, a PPT therapist named Anjeli, and/or by Eugene’s sister Mia, the novel’s highly credulous narrator:
The claim that conditions that appear to involve cognitive impairments, like severe autism and Angelman’s syndrome, instead result from motor impairments.
The claim that these motor impairments include extreme difficulties with fine motor tasks like pronouncing words and pointing to things on demand.
The claim that these pointing and speaking difficulties are the sole cause of low scores on cognitive tests.
The claim that the standard picture/icon-based AAC devices have a “limited array of preschool-level pictures” and do not allow open-ended, typed communication.
The claim that non-speakers lack the motor skills to point accurately to pictures on AAC devices.
The claim that there’s such a thing as “pointing with your arm” that happens when you point to big letters on a letterboard held in front of you by another person.
The claim that “pointing with your arm” is a gross motor skill that is relatively unimpaired in nonspeaking individuals and that can “build neural pathways” for linguistic expression.
The claim that, while these individuals appear not to be paying attention, they take in vast amounts of information and acquire literacy skills on their own.
The claim that, since the letterboard therapy doesn’t involve touch, there’s no way the therapist could cue the individual’s letter selections.
The claim that it’s possible for facilitators to hold the letterboard completely still and give off no other cues—e.g., the sort of body language cues that allowed a famous horse, Clever Hans, to tap out correct answers to math problems.
The claim that failure to pass authorship tests—and thereby to establish that the letterboard holder isn’t the one controlling the messages—is the result, not of control by the letterboard holder, but of anxiety on the part of the person selecting the letters.
Rebuttals to all of these false claims can be found on this website; I won’t repeat them here. However, author Kim, as a professional writer, often outdoes other RPM/S2C promoters in articulating the nuances, and some of this material, as well as a few additional pro-RPM/S2C claims she makes, are worth a look. Moreover, Kim, as a fiction writer, is able to flesh out the fictional Eugene in ways that make his apparent cognitive and literacy skills at least somewhat more plausible, when they emerge via the letterboard, than the purported cognitive and literacy skills of most of the real-life individuals who’ve been subjected to RPM/S2C.
Kim, for example, occasionally shows Eugene behaving in ways that suggest focused attention and high-level comprehension: fixating on a phone screen that displays texts from the missing father; turning pale while viewing a video of himself and his father just before the latter’s disappearance; or, when Anjeli (the therapist) brings up a key topic, “look[ing] back at us [the narrator and her family]” and “smil[ing] in an inviting, almost conspiratorial way.”
Kim, via Mia, also suggests that, even when he doesn’t seem to be paying attention, many additional information sources in Eugene’s surroundings also hold his attention. If he weren’t interested, she explains, he would simply walk away and start jumping (his preferred self-stimulatory activity). Here is her description of his first PPT session:
This entire time, Eugene had been looking away. If you didn’t know him, you would have thought he wasn’t paying attention at all. But we knew—if he wasn’t interested, he would have gotten up and started jumping long ago. (p. 231)
Kim/Mia also suggest that Eugene’s default state of apparently not attending to others when they address him is an act of protest: a deliberate ignoring, that is, of the insulting “baby talk” that he’s endured for years as a result of people’s gross underestimations of his linguistic and cognitive skills.
Echoing an S2C talking point, Anjeli adds that Eugene has been absorbing information “all along”:
from the sidelines, from TV, family dinner conversations, books read to you, your siblings doing homework, all that. But you didn’t look the way you’re supposed to when you’re paying attention—again, because of your motor dysfunction—so everyone thought you were just in your own world. (p. 232)
As for Eugene’s literacy skills, Kim has Anjeli suggest that Eugene could easily have learned to spell “yes” after watching Sesame Street nonstop for fourteen years, and she has Mia recall Eugene’s uncompromising preference for having the captions on when watching videos. As I’ve discussed elsewhere on this blog, however, literacy cannot be reduced to spelling. The essence of literacy is mapping text to words to meaning: that is, mapping the letter sequence “y-e-s” to the word “yes,” and thence to the rather abstract, affirmative meaning of “yes”. Learning how words map to meanings requires attention to how people use words. Attention to how people use words requires, for the more basic words that must be acquired before “yes” is, monitoring and following people’s eye gaze when they speak. These behaviors—called “joint attention”—are readily observable when they occur, and are severely reduced in severe, non-speaking autism.
Also readily observable is reading behavior. As I discussed in an earlier post, it is not enough to simply gaze at a page of text in order to read it: one’s eyes must move back and forth, left to right, line by line, letter-fixation by letter-fixation.
In that same post, however, I also wrote this:
Ay, but there’s a rub. Somewhere in FC Land I hear voices reminding me that FCed kids are geniuses. How do I know that they aren’t actually “visual thinkers” with photographic memories that allow them to “take a picture” of a page of text, look away, and then read the page in their heads—perhaps in ways that are invisible to others?
Right on cue, here’s our narrator on Eugene’s reading behaviors:
He didn’t look the way most people did, with their eyes moving left to right and up to down, but more like he was taking a picture of all the words together as a whole: his eyes fixed on the screen, squinting as if to bring the words into focus, and then, click, a hard blink. (p. 58)
For a discussion of why this kind of photographic memory doesn’t work for reading, I refer readers back to my earlier post.
One of the novel’s most extended, pro-S2C discussions concerns the inconvenient question of why family members often find it so much harder than PPT professionals do to facilitate their own child. This, of course, is readily explained by the fact that those who’ve been facilitating for a long time are better at cuing and controlling messages than novice family members are. But if all the facilitator is doing is holding up a letterboard, why can’t anyone do it?
Mia assures us that “it’s not that simple” (p. 265). She compares facilitators (or “therapists”, as she calls them) to conductors and lion tamers. A conductor can’t effectively conduct an orchestra he’s never worked with, and “an untrained person copying a lion tamer’s exact physical movements and sounds would get their head bitten off” (p. 266). She adds that “it’s ineffable talent” that depends on “a person’s interpersonal connection and influence” (p. 265, boldface mine). Indeed. Clearly much more is involved than simply holding up a letterboard. The questions are what else and why.
The typical replies only raise more questions. One reply goes like this. For some reason, Eugene—like his real-world counterparts—is unable at the initial, multiple-letterboard stages, despite his literacy skills, to determine the specific letterboard he needs in order to select a given letter: “he was dependent on Anjeli to anticipate which letter he needed and hold up the correct letterboard” (p. 266).
But even when the child reaches the single letterboard stage, Mia explains, “being family was a liability” for successful letterboarding. “This makes sense,” she adds, “because have you ever had your parents teach/tutor you…?”
Um, yes. Parents teach kids all the time. Indeed, whether it’s how to tie your shoes or how to sound out words, parents are often, for various reasons, far more effective teachers than other people are. But in what way are letterboard holders teachers? What, exactly, are they teaching?
Before the reader can dwell on these questions, Mia embarks on a second rationalization for why family members have a hard time facilitating:
…I didn’t truly get it until I read a blog post explaining it as a chronic form of complex PTSD. Eugene and others like him had been suffering trauma their entire lives in which they had been trapped, with no one realizing their bodies had been betraying them and locking in their thoughts. The absolute and final totality of this entrapment was devastating to ponder. (p. 267)
This “psychological trauma,” in turn, “added an extra burden that compounded the motor difficulties, made them exponentially harder to overcome” (p. 267).
All this, in turn, connects back to family:
The consensus seemed to be that because family members are the people with the longest history of loving but also not believing in you, around whom you’ve wrapped years of frustration and maybe even betrayal and resentment, communication attempts with them often activated and intensified this barrier of trauma. (p. 267-8)
Indeed, Mia explains, family members who are at all skeptical about letterboarding, like the narrator’s father, are pretty much doomed to fail at it: the child, already traumatized by years of entrapment, can sense their skepticism. It’s essential, therefore, to “let that go”:
Was it too much to ask that Dad overcome his inborn skepticism and just believe? (p. 270).
One could ask the same question of hyperbaric oxygen treatments, fecal transplants, chelation, bleach therapy, or any other of the scores of certainly or probably harmful pseudoscientific autism remedies that have arisen since autism first got on the radar of society’s snake oil sector. Especially when an untested treatment is potentially inhumane and dangerous—as we know it is with FC/RPM/S2C (see the “Harms” tab of this website)—it’s reasonable and rational to request efficacy testing. Is that too much to ask?
Apparently so, according to Kim/Mia. I’ve never heard Vosseller admit to doing a message-passing test on anyone, but her Happiness Falls proxy has apparently tried it. With Eugene:
It never worked. Eugene froze up. I’ve tried this with other clients, and sometimes it worked. But often, it didn’t. I’ve asked them, and they don’t know why they can’t answer either. Of course, they don’t know why their bodies don’t do what they want them to half the time; that’s why they can’t talk to begin with. My best guess is that it’s the anxiety of being tested. Anxiety is huge in the autism and Angelman communities to begin with, and testing triggers the old trauma of not being believed and aggravates the motor dysfunction. Because when things come up organically during our regular session, Eugene tells me stuff I don’t know all the time, stuff Adam [his father] doesn’t even know (p. 309).
“He tells me stuff I don’t know all the time.” We’ve heard that before (see, for example, these reviews of Portia Iversen’s Strange Son and J.B. Handley’s Underestimated). As for the “anxiety defense” of message-passing failure, see the discussion in this review of Jaswal’s eye-tracking paper.
Anjeli also insists there’s no cuing of messages:
People say I must be cuing somehow with my eyes, maybe subconsciously or subtly moving the board as a signal.” She scoffed, shook her head, clearly angry. “It’s ridiculous—as if these kids who are supposedly cognitively impaired, according to these same people, are managing to somehow see and figure out near-invisible secret signals to perfectly spell long answers.” (p. 308).
Well, Clever Hans was able to do this, and while he may well be quite smart for a horse, he’s probably much worse at math than most humans are.
Besides these elaborations of familiar, pro-S2C arguments, Kim/Mia advance two additional ones. One argument, voiced by Mia’s mother, a linguist, uses Chomsky’s notion of the innate capacity of humans to learn language to claim that all humans do learn language.
[L]anguage, the ability, was there, an innate part of Eugene—in other words… Eugene was not nonverbal but merely nonspeaking—and we needed to find the trigger to unlock and access it, activate that group of neurons or whatever. (p. 272)
Making it clear that she’s not just talking about Eugene’s ability to learn language, but his existing linguistic skills, the mother says to him, “I always believed you had words. You just couldn’t express them because we failed you.” (p. 273).
But what Chomsky declared (reasonably, but without evidence) was that humans have an innate capacity to learn language. He didn’t say that humans abandoned at birth and never exposed to language would learn language. Nor did he say that every single human has the capacity to learn language (consider humans born with anencephaly, or missing brains). In order for you to actually learn language:
Language needs to enter your brain, and
You need to be able to attach that language to meaning.
To attach language to meaning, as I noted above, you need to engage in joint attention behaviors. If, as is characteristic of severe autism, you never or rarely engage in such behaviors, you will remain, not just non-speaking, but non-verbal: with little knowledge of language in any medium—even if you otherwise have the capacity to learn language.
What if you’re so brilliant that you can somehow learn language without engaging in joint attention? Indeed, the claim that the denizens of the Spellerverse are brilliant is another S2C talking point—presumably because it helps explain away questions about how these individuals could possibly acquire sophisticated vocabulary words, literacy skills, worldly knowledge without deliberate instruction and without seeming to pay attention to the language and linguistically mediated information in the world around them. To these claims, Kim/Mia add an additional one: the claim that a certain type of autistic brilliance is responsible for the inability to speak. She references a TED talk by a:
philosopher neurologist who posited that autism-related conditions might be disorders of too much rather than too little. Under this theory Eugene not speaking might be a symptom of a hyper-verbal and hyper-cognitive mind rather than a hypo- one, the paradoxical consequence of an overabundance of thoughts fighting for processing bandwidth, clogging up the nerves like a traffic jam and causing a total breakdown. (p. 133).
Of course, even if the TED talker is an actual person, the existence of someone who “posits that X might be the case”, regardless of how philosophical or neurological they are, is hardly evidence of X. Nor is there actually any empirical evidence for this “neurons clogged up with thoughts” theory of autism.
Undaunted, however, Mia invokes the usual straw men about how deeply ingrained it is in society to “equate verbal skills, especially oral fluency, with intelligence.” (p. 225). She adds that
[V]erbal acuity… was what I myself admired and equated with intelligence. Didn’t everyone? Wasn’t that why everyone loved those fast-talking (and therefore smart) characters in The West Wing? (pp. 271-2).
But Mia is smart enough to anticipate the usual rejoinder: Stephen Hawking. Hawking, she claims, was only “presumed competent” because he “lost his ability to speak after the world already knew he was brilliant.”
That’s a new take. Unfortunately, it doesn’t hold up. Hawking’s speech had begun deteriorating early in his career, in the 1970s, and by the late 1970s his speech was intelligible only to family members. For as long as most people can remember, Hawking has been the pre-eminent exemplar of what Kim/Mia claim that society doesn’t recognize: the disjunction between speech and brilliance. As for “fast-talking”: for many of us, that term evokes empty chatter, manipulation, and deception, while talk that is slow and ponderous evokes deep reflection, profundity, and wisdom.
Besides these problematic efforts to bolster her case for S2C/RPM, Kim/Mia also inadvertently undermine it. Here, for example, we see Eugene having no difficulty with the fine motor skills that he purportedly lacks:
Eugene reached down to a box garden next to the door and lifted a small ceramic turtle… I saw—a key underneath, which he picked up carefully, almost lovingly, before returning the turtle next to a ceramic rabbit… Eugene put the key in the key slot, turned, and opened the door. (p. 309)
And later we see Anjeli’s direct control over messages when she first asks Eugene whether he wants to try PPT therapy. (In this fictional version of S2C/RPM, the first stages of spelling to communicate employ boards with three letters each). After asking him this yes-no question, she picks up, among the eight possible boards, the X-Y-X board.
Eugene’s smile stayed the same, but his eyes widened and bulged out with a mischievous gleam, and he stabbed the pencil into the space in the middle, at the intersection of the three lines of “Y”…
Anjeli put the X-Y-X board down and held up a different one with D-E-F on it. “OK, what’s the next letter?” It seemed to take Eugene even longer this time, but Anjeli kept smiling and encouraging him to keep focusing with not a hint of frustration or impatience… until he finally stabbed “E”, and she switched to the S-T-U board. “One more. Final letter.”… (p. 231)
We can only wonder what would have happened if Anjeli had picked up the N-M-O board instead of the X-Y-X board after asking this question.
But I’m forgetting myself: this is fiction, and it’s not clear that counterfactual questions are applicable.
But since this is fiction, why not have Eugene, in the end, pass a message passing test? Curiously, Kim instead opts for ambiguity.
On one hand, she endows Eugene, finally, with fully independent typing: in the last scene with his father, Dad puts the letterboard against a pile of rocks and Eugene finally types for him. On the other hand, our only source on this is Eugene himself, as facilitated (albeit remotely via Zoom) by Anjeli.
And none of Eugene’s eye-witness reports, though they convey information about events unknown to his audience and facilitator, is independently verified. Instead, the account he gives mysteriously matches the purely speculative account that his siblings concocted the late night before in hushed voices in a room adjoining Eugene’s bedroom. Maybe, Mia proposes, his words seeped into his dreams and conflated with his actual memories. Or “what if Eugene repeated our words intentionally” and embellished it with details he’d heard earlier from others? (p. 331)
It’s interesting that Kim decides to leave unresolved the validity of Eugene’s testimony. In effect, even within the confines of fiction, she honors the S2C/RPM “don’t test” shibboleth. But if you want your work to be “beta read” and blessed by Elizabeth Vosseller, with the promise of an appearance on Good Morning America showcasing your creative writing workshops at Vosseller’s center, that may well be your best move.
Too bad it isn’t the best move for those whom Kim may well—in all sincerity—think she’s helping. We can only wish she’d done her homework first.
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