New takes on apraxia, miracles, presuming competence et al. from S2C proponents
The perusal of Prizant’s website that inspired my last post also led me to his Uniquely Human Podcast. As I mentioned, at least four of the podcast’s episodes platform non-speakers who type out messages using a variant of facilitated communication known as Spelling to Communicate, or S2C. I had initially listened to these episodes in order to explore Prizant’s 180-degree shift on matters relating to echolalia—a shift from a stance that was problematic for FC to one that supports it. But as I listened, I discovered that there were also some additional pro-FC stances that Prizant and others air that are worth going over. These include:
The purported prevalence of “unreliable speech” among minimal speakers
A conflation of “unreliable speech” with speech apraxia
The notion of that there’s new research that supports S2C
The notion that S2C proponents are not claiming that S2C is a miracle treatment
A confusion of letter selection with word selection
A slippery notion about the role of the communication and regulations partner (CRP)
The notion that S2C protocols safeguard against facilitator influence
The claim that non-speakers are routinely being denied access to “robust AAC”
A slippery notion of what it means to presume competence
But first I think a few observations are in order about some of the people involved in these podcasts--especially given how UniquelyHuman.com purports to embrace neurodiversity.
First, let’s consider Prizant’s co-host, David Finch, who introduces himself at the beginning of the show as, among other things, “being on the spectrum.” In one episode, he characterizes himself as a “fellow autistic” of one of the podcast’s non-speaking, S2Ced individuals. Finch was diagnosed as an adult by his wife, a speech-language pathologist, with Asperger’s Syndrome. (Autism Spectrum Disorder, which has absorbed Asperger’s Syndrome, is typically diagnosed by child psychologists, child psychiatrists, or pediatric neurologists).
Since receiving that now-obsolete diagnosis as an adult from his spouse, Finch has had numerous speaking gigs. On his website, he describes himself as a “writer, autism consultant, keynote speaker, and New York Times best-selling author on neurodiversity and relationships.” You can see him in action—socially dynamic and smooth-talking—here and here. At one point on the Uniquely Human Podcast, Dave states that his speech includes a lot of “false starts” and that, before editing the Uniquely Human podcast, he discovered that there were occasionally 10-minute pauses between some of his spoken words. None of this is evident the videos I linked to above.
Also worth mentioning are a few of the show’s guests. One is Jordyn Zimmermen, someone who types fluently and independently on an iPad, with no one hovering nearby within auditory or visual cueing range. Videos show her typing with both hands and multiple fingers, unlike those subjected to S2C, who are prompted to type with a single, extended index finger. Videos also show Zimmerman communicating that “I can speak. I can even have a conversation with you.” But in the Uniquely Human Podcast, she is introduced as a non-speaking individual, and her ability to speak is not mentioned once.
Another guest is Tauna Szymansky. She is introduced on the Uniquely Human Podcast just as she is described on the pro-FC webiste CommunicationFirst, where she is the Executive Director and Legal Director: as “neurodivergent and multiply disabled, and expresses herself most effectively by typing, though is usually able to communicate using speech.” Prizant adds that she has a “progressive disability.” The nature of Szymansky’s neurodivergence or of the implied impediment to spoken language is never disclosed; on the podcast, her speech is as fluent and articulate as Dave’s.
Also undisclosed are Szymansky’s two personal, vested interests in autism and S2C: the fact that FC-promoter Vikram Jaswal is her husband and the fact that her daughter is an autistic S2C-user. Prizant does, however, hint at Szymansky’s spousal connection by mentioning that he and his wife have socialized with Szymanski and her husband, whom he simply calls “Vikram.”
Other participants on the show include four non-speaking, S2Ced individuals: Ian Nordling (episodes 16 and 101), Danny Whitty (episode 35), and Elizabeth Bonker (episode 86). According to all the available evidence, their words are facilitated out of them, and likely authored, by their non-autistic facilitators.
It’s worth noting that, between (1) the above S2Ced non-speakers, (2) a co-host diagnosed with Asperger’s by his wife when he was an adult, and (3) guests like Temple Grandin, whose high functioning autism diagnosis has never been in doubt, the Uniquely Human Podcast, for all its purported celebration of neurodiversity, appears never to have invited anyone in the vast middle of the spectrum: i.e., someone with moderate autism.
Now let’s turn to non-speakers in particular, and to the nine items I mentioned above.
1. The purported prevalence of “unreliable speech” among minimal speakers
Prizant’s main source on this question is Elizabeth Vosseller, the person credited with “inventing” S2C. Vosseller defines “unreliable” as “my words don’t always mean what I say.” Sometimes, she explains, someone’s words can mean the “exact opposite.” Her example comes from one of her longest-term clients, Ian, who sometimes says “home” when actually “he’s perfectly happy” and doesn’t want to go home.
How do we determine when speech is reliable? Vosseller doesn’t spell this out, but the answer, in effect, involves spelling. As her discussion, and her facilitation of Ian, make clear, whenever there’s a conflict between speech and spelling, the latter takes precedence. Here is Ian, facilitated by Vosseller:
It is really frustrating when I blurt out something that I don’t mean or want.
Later in the podcast, Ian calls out something that sounds like “January,” and then types “That’s my unreliable mouth.” All three speakers—Dave, Prizant, and Vosseller—then marvel at Ian’s “incredible self-awareness.”
In an earlier episode, when Ian starts repeating something that sounds like “I want go” or “And then we’ll go,” Vosseller responds with “And then you’ll go after you’re done,” and Ian eventually types another apparent explanation for his “unreliable” speech: “Speech overflow.”
Vosseller compares this to the erroneous reflexes that all of us have: for example, when we say “Thanks, you too” back at someone who tells us “Happy birthday.” She also alludes vaguely to testimonials of “high functioning” people who start having trouble with speech when they get “dysregulated.” Indeed, probably all of us can relate to being so angry or freaked out that it’s hard to get the words out coherently, though I doubt even the angriest or most freaked out person says “I want to go home” when they instead want to stay.
Vosseller also suggests that “unreliable speech” includes:
statements that people accidentally say out loud that are true, but that they don’t actually want to share with others
speech that is consistent with what the person types, but comes out at a more linguistically primitive level
As Ian, facilitated by Vosseller, puts it, “Sometimes what comes out of my mouth even when it is reliable sounds young and immature.”
Ian adds: “What I spell slowly is what I can communicate when I can get my brain and body working together,” whereupon Prizant alludes to others “like Ian” who say the same thing.
What about those FCed individuals who are able to read the letters they select as they point to them, and/or the words or sentences that they’ve purported spelled out, after they’ve purportedly spelled them out? We see this with Danny, who appears in episode 35, and who can say things like “Thank you! Thank you so much!” “I’m 36 years old” “Oh my god” and “traumatizing”—after he’s typed them out. Presumably that speech is reliable since it comports with what was typed. But then why does Danny need to type first? Of course, the answer that no S2C proponent wants to voice is this one:
It’s a lot easier for facilitators to control typing than to control speech, and many individuals with autism are able to sound out printed messages even if they don’t have the comprehension skills to understand them.
Unreliability, per Vosseller, can also include movements. Vosseller recounts how someone diagnosed Ian as being “light-sensitive” and in need of special glasses. One might have concluded, from the fact that Ian initially kept tearing off those glasses and even breaking them, that he didn’t want to wear them. But, Voseller explains, although he “needed the glasses and wanted the glasses,” he had to overcome the sensory-motor experience of wearing the glasses and reflexively taking them off.
As Vosseller sums things up, “Insides don’t match the outsides.” And indeed, this purported mismatch between intention and behavior—between brain and body—is the central tenet of S2C doctrine: so central that the absence of any evidence for such a condition in minimally-speaking autism is, for proponents, not even worth contemplating.
2. A conflation of “unreliable speech” with apraxia
As I discussed in my earlier post, Prizant characterizes some instances of unreliable speech as “automatic echolalia.” Most of Vosseller’s commentary, however, suggests that she views unreliable speech as something completely different. For her, it is speech apraxia. The one paper she cites is Tierny et al. (2015), which finds that up to two-thirds of individuals diagnosed with autism have a secondary diagnosis of speech apraxia. Here is the description of apraxia the authors provide:
Speech errors made by children with apraxia commonly include (1) inconsistent errors on consonants and vowels in repeated productions of syllables or words, (2) lengthened and disrupted coarticulatory transitions between sounds and syllables, and (3) inappropriate prosody. These errors are often inconsistent making their speech particularly challenging to interpret.
In other words, apraxia is about pronouncing intended words incorrectly, not pronouncing unintended words correctly.
Moreover:
Childhood apraxia of speech is unique among the speech sound disorders because of its association with persistent and often substantial language, reading, and spelling disabilities in children.
In other words, if S2Ced individuals have apraxia, that’s yet another reason to be skeptical about the authorship of their highly literate, S2Ced output.
3. The notion that there’s new research that supports S2C
In addition to citing Tierny et al., which contradicts rather than supports her various claims, Vosseler alludes to recent work by Jaswal and Torres: people she’s been “honored to collaborate with” and whose articles we’ve critiqued elsewhere on this blog. She also cites Delafield-Butt as someone looking at the motor signature in autism.
I had never heard of Delefield Butt, so I looked up his one paper on autism and motor function, Trevarthen & Delafield-Butt (2017). As is clear from the abstract, while the authors examine problems in control of movements and in motor sequencing, they also discuss how these problems lead to problems with “affective expression and intersubjective engagement with parents,” followed by “retardation of cognitive development and language learning in the second or third year.” They examine not just “disturbances of posture, locomotion and prospective motor control in children with autism,” but also in disturbances in “their facial expression of interest and affect, and attention to other persons' expressions.”
In other words, Delefield Butt’s work is not FC-friendly. Instead of redefining autism as a motor disorder rather than as a socio-cognitive disorder with a resultant language delay, as FC proponents have been doing since the 1990s, Delefield Butt’s recent work points to motor problems as the causes of the socio-cognitive and linguistic challenges of autism that, in turn, call into question the authorship of S2Ced messages.
4. The notion that S2C proponents are not claiming that S2C is a miracle treatment
Prizant and Vosseller, apparently, are tired of we critics taking FC-promoters to task for claiming FC as a miracle treatment for autism. To try to lay this “misconception” to rest, Vosseller cites the enormous amount of work that Ian and other clients have had to put in over the years to become fluent spellers. Here is Ian, facilitated by Vosseller:
OMG there is no miracle for me! I had to work my butt off for where I am here today. I work day and night to control lots of unwanted motor that some call behavior.
But what, exactly, has Ian—facilitated by Vosseller—worked his butt off on? Vocabulary and syntax? Phonics and spelling? No. As Vosseller makes clear, what Ian is working his butt off on is the motor skill of pointing to letters on the letter board so he can “flow from letter to letter”—a motor challenge she compares to learning to dance. And while she also cites learning phonics as a comparison, she makes it clear that phonics and other language and literacy skills are not what she teaches. In other words, Ian’s language and literacy skills are already there; all Vosseller has had to do is unlock them by “teaching the motor.”
That is the actual purported miracle that raises red flags among those who haven’t drunk the Kool-Aid: the miracle of non-speakers with minimal apparent receptive language and minimal exposure to literacy instruction already knowing how to type out sentences with sophisticated vocabulary and syntax.
5. A confusion of letter selection with word selection
Another red flag about S2C and other forms of facilitated communication is the slow, laborious process of hunt and peck, index finger typing. In a couple of the Uniquely Human episodes, the suggestion emerges that hesitating over letters results from the words—as opposed to the letters—coming slowly, or from hesitations between specific word choices. But this only explains the hesitation over the first letter or two of a word; once one is a couple of letters into a word, one has chosen one’s word, and at that point the typing should speed up (assuming one’s literacy skills include the ability to spell that word).
Why many S2Ced individuals continue to hover over letter selections within words after years of letterboard typing remains unacknowledged and unaddressed.
6. A slippery notion about the role of the facilitator
S2C proponents have renamed the facilitator a “communication and regulations partner,” or CRP. This term potentially contains a multitude of roles, and, indeed, across the podcasts, Vosseller has endowed the CRP with a variety of somewhat incompatible, boundaries-crossing roles.
A therapist or trusted friend: a trusted partner who helps her client stay “regulated”. As both Prizant and Vosseller put it, “It’s all about relationships.” Vosseller adds that autistic people are actually really into relationships, “hyper-sensitive” about how people relate to them and, especially non-speakers, “especially good b.s. detectors.” A trusting relationship with the CRP is therefore especially important. This, in turn, is supposed to explain the highly variable typing fluency of a single S2Ced individual with different facilitators. Danny, for example, supposedly “became fluent” in April, 2020, with one particular person. “Now I am fluent with 3 people” and “almost fluent with another two.”
A translator: presumably of text into speech. While this might appear quite different from a therapist/trusted friend, Vosseller and Prizant, comparing CRPs to ASL interpreters, note that deaf people often have preferred interpreters. But interpreter preferences are governed by the interpreter’s overall skill and by how familiar the interpreter is with a person’s speaking patterns; not by other aspects of their interpersonal relationship. Text-to-speech translation, moreover, requires only the ability to read words and letters out loud. It’s much easier to translate between spoken and written media in a given language than to translate between different languages, and it’s not clear why interpersonal relationships would make any difference here.
A conversation partner: i.e., someone that you’re communicating with, not someone who is helping you communicate to other people. This role is at odds with the other two roles because, as Prizant eagerly points out, conversation partners often “co-construct meanings.” While he doesn’t elaborate on how this works, co-construction, as I explain in an earlier blog post, involves one conversational participant filling in their partner’s pauses with possible words they may be searching for, proposing clarifications, and/or finishing their sentences. These are all things that Vosseller claims that CRPs are trained not to do as part of S2C’s alleged safeguards against influence (more on that below). Despite this, Prizant, Vosseller, and another guest, Jordyn Zimmerman, all agree that our society puts way too much emphasis on independence, and that “interdependence is what it’s all about.” It doesn’t seem to concern them that, however dependent we all are on each other, and however desirable this interdependence might be, all of us have a right to communicate independently, without other people choosing our words for us.
A Sherpa. Vosseller states that, in her evolution from traditional speech-language therapist to CRP, she has learned that her role is to “walk with” her clients rather than “leading them.” This raises a host of questions. Why is Vosseller the one holding up and whisking away the letterboard? Why is she the one determining the criteria for deciding when someone’s speech is what they mean and when it is the opposite of what they mean? Sherpas don’t do that, or anything analogous.
7. The notion that S2C protocols safeguard against facilitator influence
None of the guests on the Uniquely Human Podcast appear to be able to fathom why some people think that there is facilitator influence in S2C. Dave, in particular, is flabbergasted: “I still can’t believe there’s any pushback, there’s any nay-saying around this form of communication. It’s just absurd to me.” He is sure that the letterboard is completely still, and that “It’s so apparent to me” that Vosseller is “not influencing in any way.”
Nonetheless, Vosseller professes to be aware of the potential for influence. Accordingly, she states, “we work diligently to be just the receiver of information; we safeguard against influence.” But as she continues, it becomes clear that the only type of influence that she has in mind is in conversational dynamics—specifically, asking leading questions or over-interpreting what the person typed. “Even when we pose a question,” she assures us, instead of asking leading questions like “What was your favorite part of XYZ?” properly trained CRPs ask open-ended questions like “What are your thoughts on XYZ?” Furthermore, she never interprets what someone typed after the fact: that is, she never says “What Ian means is this”.
In other words, Vosseller makes it sound like CRPs are trained not to engage in co-construction of meaning.
Vosseller goes on to contrast the CRP with the SLP (the speech-language therapist) who, as she did with Ian back when she was Ian’s SLP rather than his CRP, decides what the topic should be and what messages to practice. Now Ian can decide and “I just receive it.” And when looking for good CRP candidates, she looks for people who “approach[] communication with wonder and curiosity” instead of the “fixing mindset” [sic] of drawing out what they think is locked inside.
Of course, what’s much more concerning than a facilitator who decides on topics, or finishes sentences, or asks leading questions, or interprets what someone typed after the fact, or who thinks they already know what the person is going to communicate, is someone who completely controls the typing—whether through verbal prompts as the index finger approaches the target letter (“Keep going”; “You’re almost there”), or through letterboard movements, or through other, more subtle gestures and sounds, or through decisions about whether a letter selection has occurred and which letter was selected.
The closest Vosseller comes to discussing safeguards against this sort of influence is to assure us that she waits for three seconds before she says a word out loud during an S2C session in order to make sure the word has really ended “so that I’m not influencing him.” That, for her, is enough. It’s as if she’s completely unaware of the myriad additional ways in which CRPs can control messages.
8. The claim that non-speakers are routinely being denied access to “robust AAC”
For this claim, Jordyn Zimmerman is Exhibit A. Purportedly non-speaking (see above), Zimmerman was purportedly denied access until she was 18 years old to the iPad that finally let her communicate. More generally, Prizant, Zimmerman, and Szymansky, the other guest on this episode (episode 38), all claim that people who need AAC (alternative and augmentative communication) devices are routinely denied access. The culprits, apparently, are SLPs (speech-language pathologists) who routinely “gate-keep” these devices, claiming that a student is “not ready.”
What complicates this discussion, however, is the question of what Prizant, Zimmerman, and Szymansky mean by AAC, particularly when they qualify it as “robust AAC.” That’s because S2C promoters regularly conflate S2C with AAC. While it’s hard to believe that SLPs routinely deny standard AAC devices to students who need them in order to communicate—to the point, or so they claim, of trauma—it isn’t hard to believe, indeed it is to be hoped, that many SLPs routinely deny S2C and other forms of facilitated communication to their clients.
9. A slippery notion of what it means to presume competence
To “presume competence” has long been used by FC-proponents to mean to presume that the facilitated person is intellectually, linguistically, and socially competent. This, FC-proponents (along with their disability rights cronies) claim is what all of us should be doing. FC critics, along with many people in the worlds of special education, beg to differ: we shouldn’t be presuming anything a priori: we start with thorough skills evaluations and proceed from there, meeting people where they are.
Perhaps in response to this, Vosseller, as early as her first appearance on Uniquely Human, has redefined “presume competence.” For her, it means to presume that the given individual “wants to learn and can learn,” not that he or she is necessarily “an extraordinarily gifted genius.” In shifting the definition, she has, of course, straw manned her critics: no one is presuming, a priori, that their clients or students don’t want to learn, let alone can’t learn. But, per Vosseller, most therapists/teachers expect their students/clients to demonstrate that they can learn before they’re willing to help them.
Prizant adds that, years ago, someone who is a “big name in the field of autism and applied behavioral analysis” claimed that “autism is nothing more than resistance to learning.” While this doesn’t sound right, there is a grain of truth here: as a paper that includes the pro-FC researcher Morton Gernsbacher (Dawson, Mottron, & Gernsbacher, 2008) acknowledges, learning in autism is “characterized both by spontaneous—sometimes exceptional—mastering of complex material and an apparent resistance to learning in conventional ways.” As anyone can attest who has attempted to teach actual skills and content to autistic students (as opposed to simply conditioning them to select letters on letterboards in response to cues), the reduced tendency in autism to tune into other people makes it very difficult for autistic individuals to learn in conventional ways from others.
(Of course, per Vosseller, any apparent inattention is “outsides not matching insides,” and “autism is a motor issue… not a compliance issue.”)
Vosseller has made clear, furthermore, that S2C practitioners assume far more than just “can and wants to learn”; they also presume that language and literacy skills are intact. And they act on that assumption, never teaching these skills. They teach only what they, in fact, presume to be deficient: namely, motor skills.
That is, for all their exhortations to “presume competence,” no FC-proponent ever presumes that their clients are competent in intentional motor control!
Beyond presuming intact language and literacy, there’s a second level of presumption here—something that strikes me as akin to that second level of facilitation I discuss in an earlier post—facilitation that goes beyond “mere” message generation to a second level of massive translation. We see this when facilitators and others in the audience offer up hyperbolic reactions to the messages that were just typed out. Here’s one example: a message attributed to Ian followed by the reaction by one the podcast hosts:
“I think people are becoming more aware that non speaking does not mean non thinking.”
“That is brilliant.”
Is this part of presuming competence? To my ears it’s painfully condescending—and highly suggestive of some of the subliminal sentiments of FC proponents.
REFERENCES
Dawson, M., Mottron, L., & Gernsbacher, M. A. (2008). Learning in autism. Learning and memory: A comprehensive reference, 2, 759-72.
Tierney, C., Mayes, S., Lohs, S. R., Black, A., Gisin, E., & Veglia, M. (2015). How Valid Is the Checklist for Autism Spectrum Disorder When a Child Has Apraxia of Speech?. Journal of developmental and behavioral pediatrics : JDBP, 36(8), 569–574. https://doi.org/10.1097/DBP.0000000000000189
