Wednesday, January 24, 2024

Why apraxia can’t explain away the need for physical touch, held-up letterboards, or hovering prompters

 (Cross-posted at FacilitatedCommunication.org).

The most helpful comments we receive on this blog are ones that point us to specific articles that we haven’t yet reviewed here and may not be aware of—and that may be of possible relevance to FC.

Last week a reader, commenting on this post, suggested that we “familiarize [ourselves] with some of the most recent research regarding developmental dyspraxia (what some folks refer to as apraxia) in autism to understand the unique motor challenges in autism.” This commenter, who characterized herself as “a PT who has a PhD with the focus on differentially [sic] brain connectivity in autism,” referred us to three articles: Dziuk et al. (2007); Mostofky et al. (2011); and Torres et al. (2013). These articles are not currently included on our website, and so I went and read them a few days ago. In this post, I’ll discuss each one in terms of its connections to claims made in support of FC.

With the first, Dziuk et al. (2007), it’s hard to find any connections. The study is of high-functioning individuals with autism—not the population typically subjected to FC or its variants. The focus is on “skilled gestures”; not pointing. Nor are any of its results surprising: complex motor skills are a common—though not universal—challenge for individuals with autism, including in the high-functioning range.

Mostofky et al. (2011), though more recent, is somewhat out of date: it harks back to the time when everyone thought that defective “mirror neurons” were what underlies core autism symptomology. That didn’t pan out. Another of its culprits, however, has so far withstood the test of time: neuronal under-connectivity, specifically between distant brain regions. The thrust of Mostofky et al. is that children with autism have difficulty, as a result of these factors, not just with skilled motor gestures, but with forming what the authors call “action models,” or “sensory-motor programs that form the brain basis for a wide range of skilled behavior and for understanding others’ actions.” The authors propose that impaired action models result in both complex motor deficits and social deficits. The connection between “action models” and social deficits, however, is unconvincing. Social phenomena are not reducible to the sensory-motor phenomena captured by “action models”; social phenomena have much more to do with facial expressions, language, tones of voice, and interactions.

Mostofksy et al.’s most interesting finding is that individuals with autism, when learning how to execute complex gestures, rely more on proprioceptive feedback (that internal sense of where your body is in space) than on visual feedback. However, the authors make no reference to anything related to FC: not to non-speaking/minimally speaking autism; not to language skills; and not to pointing.

Finally, there’s Torres et al. (2013). The first red flag appears in the introduction: the familiar, FC-friendly claim that autistic individuals lack intentional control:

In autism… typical volitional control is highly compromised often with a striking disconnect between the intentions and the actions of the affected individual.

Torres et al. back this up with one citation: a paper co-authored by FC-proponent Anne Donnellan (Robledo et al. 2012), whose “data” consists only of anecdotal accounts, including some from FCed individuals, along with some claims made by Douglas Biklen, the person who introduced FC to the U.S.

In their own paper, however, Torres et al. mostly eschew anecdotes for high-tech equipment, dazzling us with neurological and kinesthetic terminology, brain diagrams, and graphs. The gist is (1) that the consistent and nonrandom movements that typically constitute the goal-directed behaviors (e.g., reaching and pointing) of typically developing individuals over the age of 4 provide sensory feedback to those individuals about those movements and their associated goals; (2) that this results in reliable expectations about other movements and associated goals (“kinesthetic priors”); (3) that these kinesthetic priors help individuals ascribe intent to movement in general—including that of other people; and (4) that autistic movements persist, beyond the age of 4, in being random enough to impede the acquisition of those “kinesthetic priors.”

And then they take this a few steps further:

We propose the hypothesis that the typical development of ‘kinesthetic priors’ is essential not only for anchoring kinesthetic sensing but also for the typical development of… circuits crucial for flexible hierarchical action planning, shifts of attention, and establishing counterfactuals in symbolic problem solving.

Counterfactual problem solving? Who knew that excessive randomness in movement could lead to difficulties answering questions like “If we had left two hours earlier, what time would we have gotten there?”

To say the least, Torres et al. is a highly speculative paper: the hedge “likely” appears 10 times. Among what’s likely, apparently, is that deficient “kinesthetic priors” could also be the causes of all the core deficits of autism: both the social deficits (specifically, recognizing facial expressions and passing Theory of Mind tests), and the restrictive, repetitive behaviors. In other words, the excessive randomness of movement that supposedly characterizes autism is the essence of autism: autism is a movement disorder—just as FC-proponents have said all along.

But even assuming that all its speculations are true, there are a number of problems with Torres et al. as a pro-FC piece.

First, typical 3-4 year olds, the authors find, have non-random movement profiles similar to those with autism. But typical 3-4 year olds have neither the social deficits nor the restrictive/repetitive behaviors of autism. Neither, incidentally, do those with severe movement deficits like cerebral palsy.

Second, their autistic subjects were both verbal and non-verbal, and yet all exhibited similar randomness of movement: “all fall along the statistical region of the TD [typically developing] 3-4 years old.”  So, even though Torres et al. suggest that issues with randomness might also affect speech, it’s unclear why it would affect the speech of some but not others.

Third (as I discuss in this post), many autistic kids can detect simple intent and readily ascribe some types of intent to people and other agents.

Finally, all of Torres et al.’s subjects can point. Indeed, the focus of their study is on pointing gestures, and even those pointing gestures that involved random movements were frequently accurate (e.g., when individuals were asked to pick out a particular shape from a set of 3: “individuals with ASD often had high accuracy in the match-to-sample decision.” This, of course, undermines one of the usual excuses in S2C and for held-up letterboards: individuals with autism, supposedly, have so much difficulty with fine motor skills like pointing that they need to learn from the S2C practitioners how to “point with their arms” in order to pick out specific letters.

From Torres et al. (2013).

Nonetheless, the lead author in this study, Elizabeth Torres, outed herself on Twitter last February as an enthusiastic supporter of FC and all its variants:

(Here we see the qualified “don’t test” slogan of today’s FC proponents: it’s ok to study FC with “21st century STEM” methods. But it’s not OK to test FC with simple 20th century message-passing tools that would directly answer questions about authorship, including in so-called “independent” typers who can only type spontaneous messages with helpers within auditory or visual cueing range.)

But back to the three articles—all of which focus on movement. Trivially, of course, all observable behavior amounts to movement, and so you could potentially explain everything, from bipolar disorder to trouble producing answers to calculus problems, as a movement disorder. But that would be even more reductionist than Mostofsky’s attempts to reduce social phenomena to “action models.”

Beyond this, there are a few additional problems.

First, none of these three accounts acknowledge the existence of the many autistic individuals, including non-speakers, who exhibit no obvious motor skills difficulties: the minimally speaking 4-year-old who smoothly switches LPs on a record player; the severely autistic 6-year-old who walks like a gymnast, perfectly balanced, along a narrow railing; the non-speaking 10-year-old who can unlock a refrigerator lock, fill a tall glass to the rim with chocolate milk, and move the glass to his lips without spilling. (Or is someone going to claim that these actions are not under volitional control?) For the motor/apraxia account to explain the core symptoms, it would have to be universal.

More importantly, none of these motor accounts explain away the much earlier emerging social attention deficits that characterize autism: that is, the lack of attention to social stimuli in infants as young as 2-6 months old who are later diagnosed as autistic. Brain imaging studies have found that the brains of infants at risk for autism (many of them later diagnosed) show less selective attention to social stimuli (Blanco et al., 2023; Lloyd-Fox et al. 2013); these patterns play out, in turn, in diminished social looking and diminished eye gaze monitoring (Jones et al., 2016; Chawarska et al., 2013; Jones & Klin, 2013; Mastro et al., 2002).

This diminished social attention, in turn, persists into the later years of childhood (See, e.g., Dawson et al., 1998). And as I discussed in my earlier post, it reduces the opportunity to acquire language; indeed, just how diminished a child’s social attention is correlates with just how limited his or her acquired language is.

While difficulties with complex motor movements may overlap with autism and further aggravate opportunities for social learning, they do not explain away the diminished social attention in 4-6-month-olds. Nor do they explain away the need by minimally-speaking individuals, when they point to letters, for physical touch, held-up letterboards, or hovering prompters who bark out “Keep going,” “What makes sense?” and “Right next door!”

REFERENCES:

Blanco, B., Lloyd-Fox, S., Begum-Ali, J., Pirazzoli, L., Goodwin, A., Mason, L., Pasco, G., Charman, T., Jones, E. J. H., Johnson, M. H., & BASIS/STAARS Team (2023). Cortical responses to social stimuli in infants at elevated likelihood of ASD and/or ADHD: A prospective cross-condition fNIRS study. Cortex; a journal devoted to the study of the nervous system and behavior, 169, 18–34. https://doi.org/10.1016/j.cortex.2023.07.010

Chawarska, K., Macari, S., & Shic, F. (2013). Decreased spontaneous attention to social scenes in 6-month-old infants later diagnosed with autism spectrum disorders. Biological psychiatry, 74(3), 195–203. https://doi.org/10.1016/j.biopsych.2012.11.022

Dawson, G., Meltzoff, A. N., Osterling, J., Rinaldi, J., & Brown, E. (1998). Children with autism fail to orient to naturally occurring social stimuli. Journal of autism and developmental disorders, 28(6), 479–485. https://doi.org/10.1023/a:1026043926488

Dziuk, M. A., Gidley Larson, J. C., Apostu, A., Mahone, E. M., Denckla, M. B., & Mostofsky, S. H. (2007). Dyspraxia in autism: association with motor, social, and communicative deficits. Developmental medicine and child neurology, 49(10), 734–739. https://doi.org/10.1111/j.1469-8749.2007.00734.x

Jones, E. J., Venema, K., Earl, R., Lowy, R., Barnes, K., Estes, A., Dawson, G., & Webb, S. J. (2016). Reduced engagement with social stimuli in 6-month-old infants with later autism spectrum disorder: a longitudinal prospective study of infants at high familial risk. Journal of neurodevelopmental disorders, 8, 7. https://doi.org/10.1186/s11689-016-9139-8

Jones, W., & Klin, A. (2013). Attention to eyes is present but in decline in 2-6-month-old infants later diagnosed with autism. Nature, 504(7480), 427–431. https://doi.org/10.1038/nature12715

Lloyd-Fox, S., Blasi, A., Elwell, C. E., Charman, T., Murphy, D., & Johnson, M. H. (2013). Reduced neural sensitivity to social stimuli in infants at risk for autism. Proceedings. Biological sciences, 280(1758), 20123026. https://doi.org/10.1098/rspb.2012.3026

Maestro, S., Muratori, F., Cavallaro, M. C., Pei, F., Stern, D., Golse, B., & Palacio-Espasa, F. (2002). Attentional skills during the first 6 months of age in autism spectrum disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 41(10), 1239–1245. https://doi.org/10.1097/00004583-200210000-00014

Mostofsky, S. H., & Ewen, J. B. (2011). Altered connectivity and action model formation in autism is autism. The Neuroscientist : a review journal bringing neurobiology, neurology and psychiatry, 17(4), 437–448. https://doi.org/10.1177/1073858410392381

Robledo, J., Donnellan, A. M., and Strandt-Conroy, K. (2012). An exploration of sensory and movement differences from the perspective of individuals with autism. Front. Integr. Neurosci. 6:107. doi: 10.3389/fnint.2012.00107

Torres, E. B., Brincker, M., Isenhower, R. W., Yanovich, P., Stigler, K. A., Nurnberger, J. I., Metaxas, D. N., & José, J. V. (2013). Autism: the micro-movement perspective. Frontiers in integrative neuroscience, 7, 32. https://doi.org/10.3389/fnint.2013.00032

Posted by Katharine Beals at 2:13 PM 0 comments

Wednesday, January 10, 2024

Falling for Happiness Falls: Is it too much to ask we overcome our skepticism and just believe?

 (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:

  1. Eugene, despite his dual diagnoses of autism and Angelman’s syndrome, has no cognitive impairment whatsoever; only motor difficulties that prevent him from speaking.  

  2. 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.

  3. 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:

  1. Language needs to enter your brain, and

  2. 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.

Posted by Katharine Beals at 11:26 AM 0 comments

Tuesday, January 2, 2024

Spellers but not Readers--update re peripheral vision

(A follow-up to an earlier post).

I've just encountered another claim about how facilitated individuals read--this one in reference to a person with FOXG1 Syndrome, a rare neurological condition that can cause significant intellectual impairment and autistic-like symptoms.

This individual, currently a student at Columbia University, is facilitated not via a held-up letterboard or by a facilitator's hand on some part of his body, but by the facilitator holding his torso and directing it towards one of six large, color-coded buttons that, pushed in combinations of two, select specific letters on a computer.

You can see it here, starting at around the 54-minute mark.

The claim is that this person, while refusing to wear his prescribed glasses, can read through peripheral vision. From the above-linked video we hear the Dad say:

He can read, like, a book. It’s really hard for him. You have to mask all the other lines so he reads one line at a time. It’s really difficult with his movements to look at something consistently. He does I think they call it “keyholing” where he looks out the side of his peripheral vision. He’s better than I am for sure but with his peripheral vision he sees everything.

As Janyce Boynton has discussed, it is highly unlikely that anyone can read via peripheral vision.

Posted by Katharine Beals at 10:59 AM 0 comments

Wednesday, December 20, 2023

Can facilitator influence be reduced to co-construction of meaning?

Sometimes it seems there are as many FC-defending tactics as there are FC proponents. One such tactic is to conflate facilitator influence with so-called “co-construction” or “negotiation” of meaning—the sort of thing that occurs between independently communicating conversational partners—as, for example, when one partner asks for clarification or completes the other partner’s sentence.

For example, Sonnenmeier (1993) compares conversational co-construction to the facilitator’s “stating of an entirely predicted word after a few letters have been selected,” as well as to the facilitator’s various “regulatory” functions:

  • “encouraging statements (e.g. ‘keep going’)”

  • “reminders to look at the keyboard”

  • “cues regarding written language conventions (e.g. ’you need a space after a word’; ’you can use a period if that's the end of your idea.’)”

  • “pulling the facilitated communicator's hand away from a wrong letter selection (which should only occur when a facilitated communicator has produced a string of letters that could never be understood)”

  • “interrupt perseverative selections.”

And Jaswal et al. (2020) compare interlocutors who help each other find words or complete each other’s sentences to the so-called “assistant” in their study, who:

  • sometimes redirected participants who seemed to lose their train of thought

  • requested clarification

  • interrupted, and said aloud a word before the participant finished spelling it

More recently, Nicoli et al. (2023), as I noted in my recent post, propose that the most likely effects of the facilitator’s touch on the FCed person’s typing” is a “co-creation” process that is analogous to someone who helps a mobility-impaired person walk. They don’t bother fleshing this out further or explaining how this kind of assistance in any way resembles co-construction/meaning negotiation in everyday conversation.

Returning momentarily to Sonnenmeier (1993), she, incidentally, also engages in another common pro-FC ploy: equating FC with AAC. Most AAC promoters, of course, reject this comparison. On the other hand, they, too, invoke co-construction of meaning (see, e.g., Beukelman & Mirenda, 2005). Examples of co-construction cited in AAC use include:

  • Partner-assisted scanning, in which the assisting partner moves through a series of items (e.g., letters, words, or pictures) and waits for a signal from the AAC using partner, which indicates the latter’s selection. After each signal, the assistant adds the selected item to the developing message.

  • AAC-mediated language instruction, in which a teacher or therapist attempts to elicit responses, asks for clarification, repeats back selected items, and/or models appropriate vocabulary and grammar.

While there’s nothing wrong with these AAC-based conceptions of co-construction/negotiation of meaning, they are specific to either to AAC or to speech-language therapy; they are not characteristic of independent, everyday conversation outside of instructional settings.

There is a problem, however, with the attempts by FC proponents to equate the co-construction/negotiation that occurs in everyday conversation with facilitator influence and facilitator prompting.

The co-construction/negotiation of meaning in everyday conversation takes several forms. One is “completion”: that’s when people complete each other’s sentences or suggest words when the other person is having trouble thinking of them or is otherwise distracted:

A: No matter what answer you give, you’re screwed. It’s like a…

B: Like a Catch 22 situation.

A: Yes, exactly.

As we’ve seen, FC-proponents have compared situations like this to cases where the facilitator says a word out loud before the facilitated person finishes typing it. But as those of us who’ve watched scores of FC videos can tell you, there’s one key thing that’s missing: the equivalent of A’s “Yes, thank you.” The facilitator does not seek confirmation from the facilitated person that he’s guessed the right word, nor does the latter provide such a confirmation. The guessed word serves as an instrument of message control, not of message assistance and message confirmation.

Another element of everyday message co-construction is “expansion.” This occurs when one person elaborates on another person’s message:

A: Last year we went to the Mütter Museum.

B: You and your students.

A: That’s right.

Once again, a crucial part of the co-construction process is the first speaker’s confirmation that his partner’s elaboration was accurate.

Other elements of co-construction involve requests for clarification, which also involve a confirming reply:

A: Where did he go?

B: Are you asking about Mark?

A: Yes.

One sort of co-construction is less visible and doesn’t necessarily lead to a process of clarification and confirmation: the listener’s interpretation of the speaker’s words. Many words mean different things in different contexts, especially pronouns like “he”; many sentences mean different things in different contexts, depending on how literally things are taken. Even a simple sentence like “It’s cold in here” can mean anything from a literal comment about the temperature to a request that someone close the window to an observation about an unfriendly social ambiance.

It’s worth adding that everyday AAC-mediated conversations can also involve completion, elaboration, clarification, and interpretation.

But there are limits to how much co-construction/negotiation of meaning occurs in real-life conversation. Only sometimes do we finish each other’s sentences—and we do so mostly with those we know best. Only sometimes do we elaborate or ask for clarification. And most of the time when we interpret someone’s words in context—e.g., the meaning of “he” or of “It’s cold in here”—we’re not too far off. Usually, the context suffices. Finally, even if we’re wrong, the speaker’s intended message remains. It is still there in her words and it’s still there in her head. And if need be, she can keep reasserting it, perhaps with different words, until it gets across. Her words may change, but her message may remain the same.

The only situation in ordinary conversation where messages change and evolve, and where each person potentially makes an equal contribution to a given message, is when the interlocutors are, in fact, collaborating on a message or an understanding of a problem or situation. Most of the time, however, things are far less cooperative: first comes A’s message, then B’s message, then another message from A, and so on. Whoever the current speaker is owns the current message.

In FC, however, all the rigorous research shows that the speaker’s messages play no role at all in any so-called “co-construction.”

But even in a fantasized scenario in which the facilitator is somehow not controlling the messages, the sorts of “co-construction” that occur most frequently in FC bear no resemblance to co-construction in everyday communication. In addition to:

  • The lack of confirmation from the speaker when the facilitator says a word before the facilitated person finishes typing.

There’s:

  • The fact that a facilitator is not the same as a conversation partner. Despite recent rebrandings of FC in which facilitators are now “communication partners” or “co-communicators,” the facilitated person is not exclusively conversing with their facilitator. In Youtube videos, for example, they’re typically addressing interviewers or audiences.

  • The lack of any resemblance between the facilitator’s activities and instances of completion, elaboration, clarification, and interpretation in everyday conversation.

Indeed, none of these routine facilitator behaviors:

  • holding the facilitated person’s wrist or shoulder

  • pulling the person’s hand back from the keyboard

  • holding up the letterboard and shifting it around

  • whisking away the letterboard saying “keep going” when the person’s finger is not yet at the target letter

  • saying “right next door” when the person’s finger is one letter away from the target letter

  • saying “what makes sense” when the person is about to select the wrong letter

….have anything in common with the kinds of exchanges that occasionally occur in authentic communication:

A: No matter what answer you give, you’re screwed. It’s like a…

B: Like a Catch 22 situation.

A: Yes, exactly.

or:

A: Last year we went to the Mütter Museum

B: You and your students.

A: That’s right.

or:

A: Where did he go?

B: Are you asking about Mark?

A: Yes.

“Yes.” The independent word that confirms the message—so important in authentic communication, and so egregiously and pervasively absent in FC.

REFERENCES

Beukelman, D. R. & Mirenda, P. (2005). Augmentative & Alternative Communication: Supporting Children & Adults With Complex Communication Needs. Baltimore: Paul H. Brookes Publishing Company.

Jaswal, V. K., Wayne, A., and Golino, H. (2020). Eye-tracking reveals agency in assisted autistic communication. Scientific Reports. 10:7882. doi: 10.1038/s41598-020-64553-9

Nicoli G, Pavon G, Grayson A, Emerson A and Mitra S (2023) Touch may reduce cognitive load during assisted typing by individuals with developmental disabilities. Frontiers in Integrative Neuroscience 17:1181025. doi: 10.3389/fnint.2023.1181025

Solomon-Rice, P. & Soto, G. Co-Construction as a Facilitative Factor in Supporting the Personal Narratives of Children Who Use Augmentative and Alternative Communication. Communication Disorders Quarterly, 32(2), https://doi.org/10.1177/1525740109354776

Sonnenmeier, R. (1993). Co-construction of Messages during Facilitated Communication Facilitated Communication Digest 1(2), [pp. 7-9]

Posted by Katharine Beals at 12:30 PM 0 comments

Wednesday, December 13, 2023

Are autism rates really going up? And why are there so few moderately autistic kids?

It has recently occurred to me that there may be a connection between:

  • autism rates appearing to keep rising
  • moderate autism appearing to be increasingly unusual relative to profound autism and mild autism

But before I get to that, I should probably defend the premise of the second question. "Moderate autism" means somewhat socially engaged and able to put words into phrases and sentences, but not fully fluent or grammatical. Moderate autism describes the two individuals with diagnosed autism in my extended family, but hardly anyone else I've encountered in person. 

I first noticed the apparent rarity of moderate autism when I started reading autism memoirs. There are dozens of memoirs about kids who become fully fluent and socially engaged (Tony Attwood's "active but odd" Aspies). And there are dozens of memoirs of profound autism: kids who rarely engage socially and speak only a few isolated words and echoed phrases sometimes, if they speak at all. 

In all my reading, I encountered only one memoir, Clara Park's The Siege, that described a child who was clearly--socially and linguistically--in the middle of the autism spectrum. Indeed, I was so excited to finally learn of someone who resembled my family members that I wrote the one and only fan letter I've ever written, became fast friends with the Park parents, and met Jessica Park several times in person.

Later, when I developed the SentenceWeaver, a program designed for autistic kids who are able to speak and read but have difficulty expressing themselves in fully grammatical sentences, I was once again confronted with the rarity of moderately autistic kids: the kids that seemed most likely to benefit from my work. And later still, when I went around the country interviewing autism parents and teachers on an NSF grant, it once again seemed as if everyone but me was dealing with either severe autism or what used to be called Asperger's Syndrome. 

If this impression is correct, it's quite odd. It would suggest that autism doesn't involve a normal distribution from severe to mild:



But instead something like an inverse bell curve:



This sort of bimodal distribution, however, is not what you generally get with well-defined, empirically grounded categories. Such distributions suggest, instead, that we're dealing with two distinct phenomena.  Indeed, a recent paper suggests that this may be the case: it suggests that higher functioning autism may have more in common with ADHD than with profound autism. That would place moderate autism either at the more severe end of some sort of HFA/ADHD spectrum, or at the higher end of some sort of "pure", ADHD-free autism spectrum.

But just the other day, I started suspecting that there might be a different explanation: a connection, that is, between the relative rarity of moderate autism and the rising rates of diagnosed autism--which in the US now stands at 1 in 36.

The perennial question is whether this increase is an increase in the rate of actual autism, or merely an increase in the rate at which autism is diagnosed. People who say there’s a real increase in autism tend to be clinicians who work in the field, who see their waiting lists getting longer and longer, and parents who are involved in autism parent groups, many of whom are on these waiting lists and/or send their kids to autism-specific programs. When you’re suddenly immersed in autism, it can seem like it’s suddenly everywhere--especially if you find yourself waiting for months for services because so many families are ahead of you in line.

If this increase is real, what is causing it? Most people no longer blame vaccines; those who still do seem to be a mostly fringe group that is also susceptible to other quack notions like chelation and facilitated communication (FC/RPM/S2C). But other theories abound. More older dads? More premature births? More toxins in the environment? More intermarriage between geeks? 

Or is some or all of the increase simply an increase in autism identification and diagnosis, as opposed to actual autism incidence?

There are good reasons to think that changing patterns of identification and diagnosis are a major factor. The removal of the Asperger’s diagnosis from the DSM-5 in 2013 meant that people who would have been diagnosed with Asperger’s were instead diagnosed as autistic. Consistent with this is one study that observes that the increase in autism rates observed in individuals born in 1992 compared to individuals born in 2003 “is stronger for high than for low-functioning children.”

As for low-functioning autism, there's strong evidence that kids who used to be diagnosed as profoundly intellectually disabled are now being diagnosed instead as profoundly autistic.



Could all this explain why moderate autism seems to be so rare relative to profound and severe autism?

Indeed it could. Increased diagnosis of both high-functioning and profound autism relative to moderate autism could potentially flip the curve, raising the rates at both ends of the spectrum, but having no effects in the middle. 

The middle of the spectrum, after all, is the home of the most quintessentially autistic individuals--those who most resemble the early cases on which Leo Kanner based his then-novel category "autism", and those who are least likely, since the onset of the DSM, to have ever been mistaken as falling into some other diagnostic category.

Unfortunately, I haven't been able to confirm (or disconfirm) this theory: the epidemiological data has a habit of either not disaggregating degrees of autism, or of conflating moderate autism either with severe autism ("moderate-to-severe" autism) or with "mild" autism ("moderate-to-mild" autism), or of being unclear or inconsistent about whether "high-functioning" autism includes moderate autism. 

But for now at least, I'm left with the impression that the most quintessentially autistic individuals are, ironically, getting drowned out in an epidemic of diagnosis (overdiagnosis?) at both ends of the spectrum.

Posted by Katharine Beals at 11:54 AM 0 comments
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