Can Jaswal’s “HoloBoards” substitute for letterboards? Part II

This post picks up where I left off in my discussion of a recent paper co-authored by Vikram Jaswal, Professor of Psychology at the University of Virginia and the father of an S2C user, and Diwakar Krishnamurthy, Professor of Electrical and Computer Engineering at the University of Calgary and the father of an RPM user. This paper, Alabood et al. 2024 (Jaswal and Krishnamurthy are listed, respectively, its fourth and fifth authors), discusses the development and preliminary study of a virtual letterboard, or what the authors call a “hologram” or “HoloBoard.” Here, instead of having a facilitator, or what the authors call a “Communication and Regulation Partner” or “CRP,” hover next to them and hold up the letterboard in their faces, S2C users don a virtual reality headset that projects a virtual letterboard, or “HoloBoard,” in front of them and follows them around wherever they turn their heads. Purportedly, this is an improvement on physical S2C and gives users more autonomy and privacy.

In my previous post, I left off with the author’s conviction that the challenges that autistic individuals have in generalizing a skill learned in one environment to other environments, together with the environmental differences between pointing to letters on physical letterboards vs. holographic ones, means that S2Ced individuals need to go through explicit training in order to transfer the skill of pointing to letters on a letterboard to pointing to letters on HoloBoards. In my previous post, I questioned this assumption, in part, by noting that the generalization difficulties in autism don’t include difficulty spelling words in one environment vs. another, and that:

hyperlexic autistic kids have been observed spelling words in all sorts of contexts, and without any explicit instruction: from refrigerator letters to sidewalk chalk, to letters they form out of playdough.

Given the design of the HoloBoard, there’s good reason to think that transitioning from typing on a letterboard to typing on a HoloBoard is much simpler than transitioning from refrigerator letters to playdough. As I noted in my earlier post, the researchers meticulously replicated in virtual space the physical letterboards the kids are used to, down to the precise arrangement of the letters. Indeed, given that the HoloBoards so closely replicated the physical letterboards, it’s hardly surprising that the training, in fact, went quickly—surprised though the authors profess to be about this.

The training involved going back and forth from a physical letterboard to a virtual one, first selecting an individual letter (as requested by the researcher), and then spelling an entire word first with visual cues (the target letters would pulse), then without them. Choosing names with which they assumed the participants would be familiar—CAT, DOG, FISH, TIGER, TURTLE—the authors report that “16 of the 23 participants completed the training module with their average training time being less than 10 minutes.”

And they find all this impressive, even given the extremely slow but improving typing speed:

Although the speed with which they spelled on the virtual letterboard was, on average, about two thirds as fast as on the physical letterboard, that most participants got faster at using the virtual letterboard across phases is impressive given that they were adjusting to a new training environment and were asked to do increasingly demanding spelling tasks.

And they found it reassuring that “a number of” their participants “explained,” via S2C-generated output, “that with further practice they ‘could get really good at it.’”

Feedback provided via S2C, of course, is more likely to be coming from the CRPs than from the participants themselves. And this leads to an alternative account for why the participants’ typing on the HoloBoard was slower than their typing on the letterboard: they had to get used to a different set of facilitator cues (more on that below). With further practice, they might indeed “get really good at it.”

This S2C-generated comment isn’t the only instance in which the participants “provided feedback” to the researchers. Arguably, the biggest moment for participant feedback was before the study actually began, when prospective participants decided whether to give consent to participate in it. This particular study, on one hand, might seem short and innocuous: all it had participants do was point to letters on physical and virtual letter arrays to spell a small set of short words. However, inasmuch as the comprehension deficits in non-speaking autism (see my previous post) mean that letter pointing in S2C is relatively meaningless for those subjected to it, the same goes for the letter pointing activities in the experiment.

Furthermore, there are two key ways in which interacting with the HoloBoard is potentially more aversive than interacting with a CRP. First, participants had to wear a headset the entire time; second, they had a virtual letterboard constantly hovering in their lines of sight, whichever way they turned. Many people might find this uncomfortable, particularly those with the sensory issues that often accompany autism. Indeed, the authors report that “3 [participants] could not tolerate the device long enough to engage with the application, likely due to their sensory sensitivities;” that “[t]hree participants found the experience to be overstimulating but managed to complete a few phases by taking short breaks,” and that one “indicated” partway through the trials “that they were too tired to continue.” Another person for whom the HoloBoard didn’t work out, curiously, was someone whose caregiver indicated that they interacted with the physical letterboard via peripheral vision. Since the HoloBoard is programmed to remain in front of the user’s face, it doesn’t lend itself to peripheral viewing—as unlikely as it is anyone can distinguish letters through peripheral vision (see Janyce’s post on this subject).

So how did participants give consent for this possibly aversive study? Through S2C-generated output: i.e., output that may well have been totally under the control of their CRPs. Given all the other things that Institutional Review Boards (IRBs) get worked up about when deciding whether to approve clinical research, it’s ironic that FCed consent procedures don’t raise red flags. It would seem that, for all their concerns about safeguarding people with disabilities, the programs that certify IRB members are ignorant of some of the greatest threats to some of the most vulnerable of such people.

Participants also purportedly provided feedback to the researchers about the design of the HoloBoard: “HoloBoard was a result of more than a year of consultations with nonspeakers” (and with their CRPs and others). Specific suggestions attributed to the participants included “interest in the visuals and sound effects,” with one participant purportedly spelling "what I most liked was the sounds that went when pressing and clicking [the buttons]." Reporting such inputs allows the researchers to check off that box that so many in disability studies fields now prioritize, i.e., making sure your research is “inclusive” or ”participatory;” in other words, mindful of the “nothing about us without us” mantra of the disability rights movement. One of the perverse effects of this new priority is that it’s incentivized those who do research on minimally-speaking autism to include non-speaking autistics in the only way that seems (to the more deluded or denialist of these researchers, anyway) to work: namely, through FC/RPM/S2Ced output. And what this means, more broadly, for any research on non-speaking autistics is that a specific subset of non-speakers, namely those subjected to FC/RPM/S2C, will be the ones recruited to provide “feedback” on everything from experimental design to future directions for research—feedback that is most likely coming, ironically, from their non-autistic, non-clinically-trained CRPs.

Even more perversely, some of the feedback that the participants in this study purportedly provided could be used to motivate the subjecting of growing numbers of minimally-speaking autistics to virtual letterboards:

·        It was “cool because [their] CRP doesn’t have to be with [them]” but "make[s] it harder for [the CRP] to prompt and regulate [them].”

·        "[I]t felt amazing to be independent. I loved how easy the letters were to access. I am thinking it will get easier with practice."

·        "I think it was nice to not have to get a CRP [to hold the board], that I was the only one who could use it."

·        "I liked many things: in particular, I like the inclusion and the independence from mom"

·        [It could] “improve the education standard for. . . nonspeakers.” 

·        “[T]he headset on made the distractions seem to really disappear. . . it made me greatly focused, having my visual field more restricted."

All this output, generated as it was through letter selections (it’s unclear how much of it was generated through held-up letterboards and how much of it through interactions with the HoloBoard), may well have been controlled by the CRPs.

Let’s turn, now, to the findings.

At first glance, they might seem impressive. To begin with, the HoloBoard environment eliminated one major opportunity for CRP influence. In RPM/S2C, it’s up to the CRPs to determine when a letter selection has been made: they decide which letters to call out and transcribe, which allows them to ignore certain letter selections and to call out different letters than those that were actually selected (something often evident in videos of S2C). In the HoloBoard environment, it’s the HoloBoard that reads out and transcribes the letters.

Another way in which CRPs regularly influence letter selection is through board movements, including pulling the board away and then repositioning it. But the researchers report that, though the HoloBoard environment allowed them to do these things, the CRPs in the experiment generally chose not to:

We observed only one CRP who initially moved the virtual letterboard to make room for the physical letterboard. Other CRPs simply left the virtual letterboard in the same place even when the participant was touching a letter on the physical board.

In addition, of the 16 (out of 23) participants who completed the study, the majority performed well in the testing phase, where they had to spell words that were spoken out loud to them, and which were mostly not words they had trained on in the study’s training phase. The authors report that:

§  “73% of participants were able to complete Phase 5 with success rates of 100%, while 10% scored between 63% to 71% in that phase. The total average Phase 5 success rate for those who completed that phase is 95.8%.”

§  “when participants were allowed to continue interacting with the virtual letterboard after the formal session, 14 participants spelled lengthy sentences, sent emails via the application, or offered their feedback on our system solely using the virtual letterboard.”

§  14 participants “quickly learned to self-correct typos using the backspace and space bar.”

§  “many participants were able to perform optional, more advanced tasks such as providing independent full sentence feedback on our system using solely the virtual letterboard” (despite the fact that they couldn’t select letters independently with the physical letterboard)

§  5 participants were able to use HoloBoard in “solo mode” in which the CRPs removed their headsets and couldn’t interact with the virtual environment. In solo mode, they “spelled short answers independently... when asked to do so (e.g., spell your name, home city, parents’ names, favorite movie, age).”

But on closer inspection, these results are not as impressive as they first appear. First of all, in the “multiplayer mode” that was used during the training and test phases, the CRPs had access to the virtual reality and could “see the virtual letterboard” and “gauge what letters the nonspeaker is attempting to interact with.”  Based on what they saw, the CRPs could, and did, deploy what the authors call “verbal prompts” and “cues,” and this extended into the testing phase. As examples of prompts, the authors give "resist the mental loop," "scan the board," or "find your next letter”; as examples of cues, they give “repeating the word that needed to be spelled, verbally guiding the participant to the location of the next letter, or spelling out the next letter.” Such prompts and cues occur regularly in S2C and often suffice, on their own, to influence letter selection—even if they aren’t as explicit as prompts that provide verbal guidance to a letter’s location or that spell out the next letter.

Indeed, there are numerous published videos of FC/RPM/S2C where the typing is done on a stationary device, with the S2C merely providing occasional verbal prompts and cues, along with body language cues like moving their torso, head, or hand in the direction of the next letter, or giving a subtle non-verbal signal when a wandering index finger has arrived at the correct letter (see, e.g., here). Some of these published videos come from the Telepathy Tapes podcast, where the non-speaker types out a number or word that only the CRP was shown, such that the only other explanation, other than CRP control through subtle verbal and/or gestural cues, is telepathy (see Janyce’s analysis of this one). Telepathy is a topic that Jaswal has thus far avoided discussing. Nor do he and his co-authors discuss the possibility that the CRPs might be providing gestural cues in addition to verbal ones to their participants. There is nothing in the HoloBoard environment to rule this out.

Instead, the authors simply stress that there was less prompting and cueing in the test phase.

The number of cues dropped to 5 in phase 5. Participants needed prompts for 11.5% of interactions(a total of 27 interactions)... In the testing phase (Phase 5), we observed only 7 prompts in total.

Now let’s look at what the test phase required participants to do. As the authors explain:

[P]articipants were “required to spell five words (their first name, PIG, DUCK, CAMEL, DONKEY, spoken aloud by the researcher), one at a time, solely on the virtual letterboard and without visual cues or mirroring. In this phase, we expected the words they were asked to spell would be familiar, but only one (DUCK) had appeared in a previous phase.

One thing that’s striking here is just how short these verbal items are compared to the length of most S2C-generated messages. The authors have suggested that the reason for this relates to the purported cognitive demands of learning to use the HoloBoard, and that “communicating [on the HoloBoard] in a more generative matter” (which presumably includes longer sentences) might be something that would be achieved with “further training.” But assuming that the participants’ literacy skills are genuinely intact, you’d think, once they learn to type any letters on the board, longer, “more generative” sentences would come along automatically for the ride.

Second, some of the words/letter sequences were familiar. Two of the five short words the participants were asked to spell were their first name and the word DUCK, which had also appeared in the training. Given that the participants “had an average of 5.26 years (range: 2.25 to 13.33 years) of using the letterboard,” some of the other words, as well as some of the letter sequences (particularly “c-k”) may have been familiar as well.

As an aside, it’s quite telling that, despite the participants’ multi-year experience with S2C, the “CRPs reported that none of our participants could reliably spell on a physical letterboard unless it is held by a CRP.”  This, along with everything else, suggests they were highly dependent on facilitator cues.

Another important consideration is the difference between spelling and understanding. Participants were only asked to spell words; not to use them in meaningful ways. Nor did the verbal prompts to spell specific words require much in the way of comprehension: with the exception of the prompt to spell one’s first name, these were simple dictation exercises in which the word to be spelled was spoken out loud. As for the prompt for the participant’s name, this common question may have been a highly familiar prompt with a highly conditioned response.

Taken together—the simple familiar words, the minimal comprehension demands, and the opportunities for the kinds of CRP cueing that can completely control letter selection (cf. the Telepathy Tapes), the fact that “73% of participants were able to complete [the test phase] with success rates of 100%, while 10% scored between 63% to 71% in that phase” isn’t convincing evidence for the HoloBoard, as deployed in this experiment, as an authentic way for non-speaking autistic individuals to communicate.

The more seemingly convincing HoloBoard interactions only occurred after the actual experiment was over: namely, the 14 participants who “spelled lengthy sentences, sent emails via the application, or offered their feedback on our system solely using the virtual letterboard” and “were able to perform optional, more advanced tasks such as providing independent full sentence feedback on our system using solely the virtual letterboard.” Since these post-experimental claims are anecdotal, they only carry so much weight—particular as the authors don’t provide any details about either the message content or their communicative context, or what the CRPs may have been providing by way of verbal prompts, cues, and gestures.

The only time the participants’ interactions with the HoloBoard were definitively unprompted was when they occurred on “solo mode” (where the CRPs removed their headsets and couldn’t interact with the virtual environment). Only five participants used the letterboard in solo mode, and here all the authors report is that they “spelled short answers independently... when asked to do so (e.g., spell your name, home city, parents’ names, favorite movie, age).” Given

§  the many years of practice that these participants with S2C (5.26 years, ranging from 2.25 to 13.33 years)

§  the likelihood that these were highly familiar-sounding questions (even if not fully understood) to which the participants had frequently spelled out answers

§  the well-attested rote memorization skills in autism

§  the significant comprehension deficits that researchers have found in non-speaking autism (see my previous post)

...it’s much more likely that these results reflect memorized letter patterns rather than intentional, independent communication—as well as the CRPs’ notions of what their clients’ favorite movies were, as opposed to their clients’ actual cinematic preferences. If the authors had really wanted to establish whether the HoloBoard users were authentically communicating their own messages, they could have conducted message-passing tests. Both in eschewing message-passing tests, and in presenting results that reflect memorized letter patterns rather than intentional, independent communication, Jaswal et al.’s paper resembles his two previous papers on letter pointing by non-speaking individuals with autism (Jaswal et al., 2020; Jaswal et al. 2024).

But surely this is not Jaswal’s last paper, and the future directions the authors propose for this latest technology, based both on their questionable results and the problematic, S2C-generated feedback they obtained from their participants, are alarming. Motivated by the fact that the CRPs didn’t need to hold the HoloBoard, which suggests to the authors that it “may have affordances that facilitate more independent typing,” the authors seem to be suggesting a full-scale replacement of traditional S2C with HoloBoard-based communication that seems to combine the worst elements of each:

§  “Head tracking could be exploited to ensure the virtual letterboard remains in the nonspeaker’s field of view even when they move.”

§  CRPs will continue to be present, “dedicat[ing] their focus to other aspects of supporting a user, such as promoting attention and regulation,” even when the HoloBoard user might wish to “engage in private conversations with a third person.” (They propose to explore ways that “would allow a CRP to support their nonspeaker while allowing the nonspeaker” during these private conversations.)

·        Or possibly CRPs would be replaced by a virtual CRP: “a personalized virtual CRP within the virtual environment. The virtual CRP would emulate the behaviour and appearance of a user’s human CRP to provide attentional and regulatory support.” But the virtual CRP may essentially replicate the sorts of message-controlling cues done by the real-world CRP: “Machine Learning (ML) techniques could be used to train the virtual CRP based on observations from a user’s real-world interactions with their human CRP.” While the authors don’t mention that the “virtual CRPSs” might learn to mimic the human CRPs’ prompts and board movements (part of how CRPs unwittingly control letter selections), in an article about this paper in IEEE Spectrum, a magazine published by the Institute of Electrical and Electronics Engineers, Jaswal et al. write that “This virtual assistant [which now has a name: “ViC”]... can demonstrate motor movements as a user is learning to spell with the HoloBoard, and also offers verbal prompts and encouragement during a training session.”

§  Finally, in what are even more powerful venues for message control, “[l]arge Language Models (LLMs) could be integrated to reduce the effort needed to communicate thereby reducing user fatigue. For example, such a system would allow the user to produce elaborate responses by providing just a succinct prompt to an LLM.”

Many of us predicted these last two items would next be on Jaswal’s agenda. In other words:

§  Machine learning that allows S2C’s message-controlling prompts and cues to be taken over by machines and safely hidden away within their obscure, machine-learned, neural networks from FC critics and others concerned about the communication rights of autistic non-speakers.

§  LLMs that elaborate the short messages authored by actual or virtual CRPs into messages that are even more filled with predictable blather and bromides, and even more removed from what minimal speakers actually want to communicate, than FC/RPM/S2C-generated output is.

REFERENCES

Alabood, L., Dow, T., Feeley, K. B., Jaswal, V.K., Krishnamurthy, D. From Letterboards to Holograms: Advancing Assistive Technology for Nonspeaking Autistic Individuals with the HoloBoard. CHI '24: Proceedings of the 2024 CHI Conference on Human Factors in Computing Systems Article No.: 71, Pages 1 - 18 https://doi.org/10.1145/3613904.3642626

Jaswal, V. K., Wayne, A., & Golino, H. (2020). Eye-tracking reveals agency in assisted autistic communication. Scientific reports, 10(1), 7882. https://doi.org/10.1038/s41598-020-64553-9

Jaswal, V. K., Lampi, A. J., & Stockwell, K. M. (2024). Literacy in nonspeaking autistic people. Autism : the international journal of research and practice, 28(10), 2503–2514. https://doi.org/10.1177/13623613241230709

 

Can Jaswal’s “HoloBoards” substitute for letterboards? Part I

Over the past couple of years, S2C proponent Vikram Jaswal, Professor of Psychology at the University of Virginia and the father of an S2C user, and Diwakar Krishnamurthy, Professor of Electrical and Computer Engineering at the University of Calgary and the father of an RPM user have co-authored several papers on the development of virtual tools that enable S2C users to virtually select virtual letters rather than pointing to letters on letterboards. Like Jaswal’s other recent papers, each of these begins with purported justifications for S2C as a valid communication method, and each reports instances of allegedly independent communication by S2C users. Like Jaswal’s other papers, therefore, these papers are worth reviewing in detail. In today’s post, I’ll discuss the first part of one of them: Alabood et al. (2024).

Published by the CHI (Human Factors in Computing Systems) Conference on Human Factors in Computing Systems with Jaswal as its fourth listed author and Krishnamurthy as its fifth, this paper discusses the development and preliminary study of a virtual letterboard, or what the authors call a “hologram” or “HoloBoard.” Instead of having a facilitator, or what the authors call a “Communication and Regulation Partner” or “CRP,” hover next to them and hold up the letterboard in their faces, S2C users don a virtual reality headset that projects a virtual letterboard, or “HoloBoard,” in front of them and follows them around wherever they turn their heads. Purportedly, this is an improvement on physical S2C and gives users more autonomy and privacy.

Deploying the circular reasoning so typical of S2C supporters, the article begins with variations on the usual pro-RPM/S2C claims and cites RPM/S2C-generated testimonials as its sources. In particular, it cites testimonials attributed to Dan Bergmann, Elizabeth Bonker, Naoki Higashida, and Ido Kedar, and references, as well, Edlyn Peña’s compendium of FC/RPM/S2C-generated testimonials.

In this first post, I’ll discuss these preliminary claims. These are worth fleshing out in detail, partly because some of what’s said here is new, and partly because there’s been some new research that adds to the evidence against these claims. In a follow-up post, I’ll turn to the actual study.

Claim 1: “Lack of speech is sometimes conflated with lack of ability to think.”

The source for this is an entire book, namely the memoir attributed to RPM user Ido Kedar (Ido in Autismland). And while it’s nice to see this perennial claim softened with “sometimes,” it’s hard to believe, in our Deaf-culture-aware, Stephen Hawking-informed society, that more than a handful of highly uninformed people are guilty of conflating speech with thought. Nor have I seen any references to people actually doing so.

However, what Jaswal et al. may actually have in mind here is that, in autism in particular, people like me have stated that lack of spoken language tends to indicate deficits in a very specific cognitive skill: comprehension of language. And for this, there is actual evidence, most recently in an article by Chen et al. (2024). Examining a symptom database of 1,579 minimally speaking autistic children aged 5-18 years, and using the terms “receptive language” for “comprehension of language” and “expressive language” for speaking ability, Chen et al. found that:

·        The 1,579 children “demonstrated significantly lower receptive language compared to the norms on standardized language assessment and parent report measures.”

·        “[T]heir receptive language gap widened with age.”

·        “[O]nly about 25%... demonstrated significantly better receptive language relative to their minimal expressive levels.”

·        “[M]otor skills were the most significant predictor of greater receptive-expressive discrepancy”—i.e., the 25% with language comprehension skills that were significantly better than their minimal speaking skills had better motor skills than the rest of the non-speakers.

All this is highly problematic for S2C proponents. That’s because their two chief arguments for the legitimacy of S2C are (1), that minimal speakers have intact language comprehension and (2), that minimal speakers have such severe deficits in motor skills that they’re unable to point to letters without someone holding up a letterboard in front of their faces and prompting them.

Claim 2: “the cognitive abilities of nonspeakers are routinely underestimated” such that they are “often segregated into special classrooms where teaching of basic life skills are [sic] prioritized over academic instruction.”

This, too, is a crucial claim for S2C proponents: S2C-generated output indicates that non-speakers, assuming they’re the authors of that output, have above-average academic skills. But the authors’ source for this claim, Courchesne et al. (2015) doesn’t support it. Courchesne et al. don’t address academics; what they found was that minimally speaking autistic children performed better on cognitive measures that don’t require language skills as compared with cognitive measures that do require language skills. An example of the latter is the WISC-IV, a standard IQ test that involves a fair amount of language in both prompts and tasks. The three non-linguistically-demanding cognitive measures that Courchesne et al. looked at were the Raven’s Colored Progressive Matrices board form (RCPM), which measures visual pattern recognition, the Children’s Embedded Figures Test (CEFT), which measures the ability to find hidden shapes in a complex image, and a visual search task, which measures the ability to scan a visual scene to find a specific target object or feature. Academic achievement, of course, requires much more than these three visual capabilities.

Furthermore, even though the three visual tests make minimal language demands, the results for non-speaking autistics were significantly worse than for typicals: the 26 (out of 30) minimally-speaking autistic participants who completed the RCPM, for example, had an average raw score of 18.61 out of 36; their non-autistic counterparts, in contrast, had an average raw score of 28.5. Worse still, how well a minimal speaker did was positively correlated with their language skills—most likely because, even in autism, nonverbal cognitive skills correlate with language ability (see Chen et al, 2024), which in turn, in autism, is correlated with speaking ability (more on that below). As the authors report, “autistic children's RCPM performance differed according to their reported spoken language level” with “autistic children using two-word phrases perform[ing] better… than those using no words at all.”

Returning to the authors’ claims about the inappropriate segregation of non-speakers into classrooms “where teaching of basic life skills are [sic] prioritized over academic instruction,” strong performance on visual tests isn’t enough for academic success. Academic instruction, even in math, is highly verbal; most academic tasks are highly verbal. To access academic instruction and perform academic tasks, you need to have the same skills that are required for, and measured by, the WISC-IV and other verbally-mediated, verbally demanding tests.

Claim 3: “[M]ost nonspeakers are never provided an effective language-based alternative to speech.”

Here the authors simply claim, without any citations, that standard AAC (Augmentative and Alternative Communication) devises are deficient. In particular, they state that “the vocabulary available to a user is chosen by someone else” and claim “there is no way for an autistic person to express a concept that has not already been programmed into their AAC device.” Jaswal has made this claim repeatedly, persistently unaware that most AAC devices have keyboard options that allow typing. Used in typing mode, an AAC device is just like a letterboard: the only difference is that no one is holding it up in front of the user and prompting and cueing their letter selections.

The authors also state that “Few individuals advance beyond the requesting stage”—assuming that this must be the fault of the device rather than a consequence of the well-known socio-communicative challenges that have defined autism since it was first identified eight decades ago by Leo Kanner. Non-autistic users of AAC tools—deaf children with sign language, individuals with mobility impairments—regularly advance beyond the requesting stages to a whole range of communicative acts.

Claim 4: Non-speakers need “months or years” of training by CRPs in how to ”isolate and point at specific letters on the letterboard.”

This is why, the authors explain, CRPs have to start with “partial” letterboards with larger letters (allowing CRPs to decide which third of the alphabet each next letter comes from—yet another way to control messages in the earliest stages when their clients aren’t as susceptible to cues).

But there’s no evidence that autistic kids lack the motor skills to point. In fact, pointing doesn’t appear on any of the standard motor skills evaluations, which indicates that it simply isn’t a specific motor issue for anyone—any more than other simple gestures like waving your hand. The evidence, rather, is that, to the extent that autistic kids don’t point (many do; just less often than typical children do), it’s because they don’t understand the communicative function of pointing. That it’s the social aspects of pointing rather than the motor aspects of pointing that challenge autistic kids is also supported by the fact that the least frequent sort of pointing in autism is pointing for more purely social purposes (pointing things out to people in order to share attention), as opposed to pointing for instrumental purposes (pointing to express a request). Diminished pointing in autism, that is, is consistent with the socio-communicative challenges that have defined autism since it was first identified eight decades ago by Leo Kanner; no additional challenges need to be posited to explain it (cf. Occam’s Razor).

When it comes to pointing to letters, however, the most likely challenge is literacy: pointing to the “correct” letters to generate messages entails understanding the meanings, and knowing the spellings, of the words you want to type. Given what we know about comprehension in minimal speakers (see above), it’s unlikely that S2C spellers have the ability to independently and consistently point to “correct” letters in the often highly linguistically sophisticated messages that they’re supposedly generating.

And what minimal speakers undergo during all those “months or years” of training by their CRPs in how to ”isolate and point at specific letters on the letterboard” is most likely not the acquisition of the motor skills required for pointing (which they’ve almost certainly already acquired on their own) but, rather, a behaviorist conditioning to select letters based on the prompts and (unwitting) cues of their CRPs.

Claim 5: The alleged motor difficulty of pointing to letters makes cognitive demands that are so great that “the cognitive demands of the questions they are asked” have to start out as minimal

As a result, the authors claim:

[E]arly lessons focus on spelling and closed-ended comprehension questions (e.g., "The first steam engines were used to pump what out of mines?"), and later stages incorporate open-ended questions (e.g., "Why are trains so much more common in some countries than others?”)

In fact, there’s no evidence that pointing to letters makes cognitive demands so great that it’s hard to answer open-ended questions (see above). Rather, the more relevant difference between questions like "The first steam engines were used to pump what out of mines?” and questions like “Why are trains so much more common in some countries than others?” is the number of letters one needs to point at to answer them. For the first question, 5 letters suffice (w-a-t-e-r); for the second question, many more are needed, even for a super-short, succinct response like “smaller densely populated countries are more suitable for trains,” which contains 56 letters. Getting an S2C “novice” to point to 5 letters in a row is a lot easier than getting them to point to 56 letters in a row. Even obtaining the compliance needed for lengthy periods of letter pointing—which, according to Jaswal’s earlier eyetracking paper (Jaswal, 2020), is at about one second per letter even after years of practice—presumably takes time.

Claim 6: The alleged need by minimally-speaking individuals for attentional, emotional, and sensory support while they point to letters

The authors describe the roles of the CRP as “monitor[ing] the nonspeaker’s attention to ensure they are focused on the task at hand” and “prompting the [nonspeaker] to redirect their attention to the letterboard.” Elaborating, they state:

CRPs believe that the micro-movements they make while holding a physical letterboard might aid in maintaining the speller’s attention. For example, when they notice a nonspeaker’s focus waning, the CRP might rapidly remove the letterboard from the field of view and then reintroduce it, thereby refreshing the nonspeaker’s attention.

But wandering attention and wandering away from the letterboard are more consistent with boredom: with being made to point at letters without understanding what those letters spell—which, in turn, is consistent with what we know about profound autism and with what Chen et al. (2024) report about comprehension (see above).

The authors also claim that CRPS “provide regulatory support and encouragement as appropriate,” claiming that

Since many nonspeakers have sensory needs that can compel them into near-constant motion” [Their source for this is the FC-generated memoir “The Reason I Jump”] “the CRP may reposition the letterboard as needed so that it always remains in the subject’s field of view.”

As a side note, this last point suggests that repositioning the letterboard occurs only when it’s out of the subjects field of view; in fact, a trained CRP testified in court that he repositions the board only when his client types three letters that “don’t make sense,” and many videos of RPM/S2C show repositioning occurring under many other circumstances, often for no obvious reason other than that the client was about to hit the wrong letter.

Indeed, all of these purported roles—prompting attention, encouraging, repositioning the letterboard—are opportunities for (unwitting) verbal cueing that directs letter selection.

Claim 7: Some RPM/S2C users have achieved independence

The author’s source for this is once again an entire book: once again, Ido Kedar’s entire memoir—as if a memoir that’s been attributed to someone who’s been subjected to RPM/S2C a is proof of independent typing, and as if the testimony within such a memoir is a reliable source on RPM’s validity. In the few public videos of Kedar, there’s no evidence of independent, spontaneous, prompt-free typing.

Claim 8: What’s holding the many other RPM/S2C users back from independent typing is the need for regular practice with “trained professional[s],” who are costly and scarce.

In particular, learning type independently, the authors claim, requires “regular opportunities for practicing the required skills (e.g., coordinating gaze and pointing to letters),” which in turn requires supervision and feedback by those costly and scarce “trained professional[s].”

Of course, the alleged need for years of practice and guidance from scarce, expensive professionals in order to point independently to letters depends on the claim that pointing is motorically challenging in autism, which, in turn, is totally unsubstantiated (see above).

Unsubstantiated though this claim is, it’s one of the bases for the study of the communication tool reported in this article, to which we now turn.

The purpose of the study, “to train nonspeakers in holographic spelling,” implicitly assumes that the entire issue for nonspeakers who point to letters to communicate is one of sensori-motor environment. Somehow, whether nonspeakers who can “isolate single letters and spell full words” on a physical letterboard can do the same thing with a virtual letterboard is an open question. Indeed, as far as the researchers are concerned, it’s “an ambitious goal” for letterboard users, particularly given:

§  The lack of “haptic feedback” (touching sensation) associated with touching the physical letterboard

§  the need to wear a head-mounted device

§  the need to interact with holograms

§  the presence of unfamiliar researchers

§  the unfamiliar environment of the research study

..as if all these environmental changes are enough to interfere with the ability to point to letters to spell words.

The authors, furthermore, cite studies reporting that autistic people have difficulties generalizing skills learned in one context to another. But none of the studies they cite—or others on this topic—note difficulties with generalizing something as straightforward as isolating single letters and spelling words from one environmental context to another. It’s one thing to have trouble generalizing the meaning of a word like “doctor” from one medical setting to another, or generalizing conversation skills learned in a speech therapy session to real-world conversational settings: both of these generalization difficulties are common in autism. It’s quite another thing to have trouble generalizing spelling from one context to another. Indeed, anecdotes of hyperlexic autistic kids report no difficulties at all in this department: hyperlexic autistic kids have been observed spelling words in all sorts of contexts, and without any explicit instruction: from refrigerator letters to sidewalk chalk, to letters they form out of playdough.

Indeed, what generalization difficulties there are in the context of going from standard S2C to holographic S2C are probably quite different. One difficulty is the altered context of CRP cueing: different environments mean different CRP cues. With holographic S2C, the most obvious difference, as we’ll see, is that the letter array is typically no longer held up by the CRP.

The other generalization difficulty has to do with letter position. For those who are conditioned to spell letter sequences without understanding what they’re spelling, one of the most salient things is letter position. In cases where letters’ positions are held constant relative to other letters, as they are on S2C letterboards, one of the most likely learned elements of spelling are the sequences of movements around the letter array. To spell the word CAT on an S2C letterboard, for example, one might learn to first go to the top row and towards left the end of the board for “c,” then all the way to the left for “a”, and then down to the second to last row and far right for “t.” In addition to learning the positions for common words, one might also learn the positions for common letter sequences like “t-h” (far right of the second to last row followed by left-center of the second row).

Given this, it’s telling that the researchers meticulously replicated in virtual space the physical letterboards the kids are used to, letting them (or their CRPs) choose from “a variety of virtual letterboards that resemble popular physical models used by the community,” allowing “a nonspeaker to choose the one they are most familiar with.” That is, while the researchers play up concerns about “haptic feedback” and wearing a headset (which surely is quite annoying), they fail to mention, and yet still carefully control, one key factor that is likely to generalize only if the letter selection is driven by actual comprehension: that is, the positions of the letters on the letterboard. If you’re intentionally spelling the word CAT to talk about actual cats, your finger will go to the correct letters, no matter where they appear in an array, even if it takes some searching. But if CAT, for you, is simply a series of points to letters in certain positions, you’re much more likely to be thrown by a change in letter positions.

In my next post, I’ll pick up here and take a closer look at the actual study.

I’ll close here by noting that Jaswal et al. discuss this paper in an article for IEEE Spectrum, a magazine published by the Institute of Electrical and Electronics Engineers, where they repeat many of the same faulty and problematic claims about non-speaking autism.

 

REFERENCES

Alabood, L., Dow, T., Feeley, K. B., Jaswal, V.K., Krishnamurthy, D. From Letterboards to Holograms: Advancing Assistive Technology for Nonspeaking Autistic Individuals with the HoloBoard. CHI '24: Proceedings of the 2024 CHI Conference on Human Factors in Computing Systems Article No.: 71, Pages 1 - 18 https://doi.org/10.1145/3613904.3642626

Chen, Y., Siles, B., & Tager-Flusberg, H. (2024). Receptive language and receptive-expressive discrepancy in minimally verbal autistic children and adolescents. Autism research : official journal of the International Society for Autism Research, 17(2), 381–394. https://doi.org/10.1002/aur.3079

Courchesne, V., Meilleur, A. A., Poulin-Lord, M. P., Dawson, M., & Soulières, I. (2015). Autistic children at risk of being underestimated: school-based pilot study of a strength-informed assessment. Molecular autism, 6, 12. https://doi.org/10.1186/s13229-015-0006-3

Jaswal, V. K., Wayne, A., & Golino, H. (2020). Eye-tracking reveals agency in assisted autistic communication. Scientific reports, 10(1), 7882. https://doi.org/10.1038/s41598-020-64553-9

University of Minnesota Center for Genomics Engineering on “Celebrating Emelia: Science for All”

Continuing my closer look at some of the news items from our recent news roundup, I now turn to a June 26th article on the University of Minnesota Center for Genomics Engineering website entitled Celebrating Emelia: Science for All.

Emelia, 11 years old, is described as “bright, bold, and brilliant,” and as having “a rare genetic mutation known as DDX3X.” Steph Kennelly, the author of this article and also the program manager for the Center for Genome Engineering, claims that DDX3C

is associated with non-speaking autism [true] involving a disconnect between her brain and body [false]. The condition is often described in medical literature as being linked to intellectual disabilities and developmental delays [true]—but Emelia challenges that definition...

She challenges it through S2C, or what Kennelly simply calls “spelling”:

[Emelia] has learned to communicate using a method called spelling—pointing to or typing letters one at a time to form words, thoughts, and ideas. And what Emelia has to say is nothing short of extraordinary.

Completely unmentioned throughout this article is the role of the “communication partner” in “spelling”—i.e., in sitting or standing within auditory, visual, and/or tactile cueing range of the “speller” and, typically, holding up the letterboard and (inevitably) moving it around.

What Emelia has to say through S2C/”spelling” is so extraordinary that, as Kennelly notes, she’s featured “in Episode 7 of the popular podcast The Telepathy Tapes.” But Emelia’s presence on the Telepathy Tapes, naturally, is due, not to the overall extraordinariness of what she allegedly has to say, but, more specifically, to her alleged telepathic powers. The non-paranormal explanation for Emelia’s telegraphic powers—her purported ability to type things that only her communication partner knows—is that her communication partner is the one controlling the letters that Emelia points to.

Emelia purportedly also knows multiple languages. Her communication partner reports that “She in one sentence went from Spanish to English to Portuguese” and that she also knows Hebrew and hieroglyphics. Telepathy Tapes producer Ky Dickens proposes that she picked up the latter from the “realm of fundamental consciousness,” where there is no language, and where, therefore, “all communication would be by telepathy.” Dickens also proposes that Emelia has precognition, “meaning she can predict things.”

But Kennelly doesn’t seem to want to discuss Emelia’s paranormal powers here on the University of Minnesota Center for Genome Engineering website. Instead, she writes:

Through this episode, we learned about [Emelia’s] passion for science, and how her diagnosis has led her to take a deep interest in genetics. Her dream? To one day become a genetic researcher or clinician.

In the Telepathy Tapes podcast, the only source on Emelia’s alleged interests is her mother, and in her mother’s words, those interests sound a bit more circumscribed:

She wants to be a genetics doctor. She knows the challenge is that a lot of kids are going through being nonverbal and she wants to help them.

As Kennelly reports:

We were so inspired that we invited Emelia and her family to spend a day in the Moriarity/Webber lab at the Center for Genome Engineering. During her visit, she met scientists, explored interactive models, attended presentations, and toured the lab spaces where we study the very conditions that shape lives like hers. Her questions were thoughtful. Her insights were meaningful.

During her visit, PhD research assistant Ella Eaton shared her work on developing a base editor therapy for a founder mutation of SCID-A, a rare immune disorder. While Emelia may have seemed quiet at first glance, she was deeply engaged in the discussion. She asked thoughtful clarifying questions—just like any aspiring young scientist would.

She wanted to know how the Cas9 enzyme finds the right spot in the genome, and quickly grasped how the 20-base sequence of the guide RNA leads the enzyme to its target. She also asked whether someone could have the SCID-A mutation without symptoms, prompting a conversation about recessive genetic conditions and how carrier status works. These are advanced concepts for anyone—let alone an 11-year-old—and yet, Emelia was right there with us, absorbing, questioning, learning.

Our conversation extended to the genetics of DDX3X and the observation that many autistic individuals experience chronic gastrointestinal issues. This led to a discussion on the brain-gut connection and the future of research into the gut microbiome and barrier function. Emelia may not yet have all the scientific vocabulary, but her questions are already aligned with some of the most pressing research themes of our time.

All this would be beyond even a very intelligent 10-year-old, not to mention one with DDX3X, in which the rate of significant, co-occuring intellectual disability, is, according to a recent, comprehensive, 2023 study, extremely high. This study found that, out of a sample of 101 cases, 94% had an intellectual disability, with IQ scores ranging from average (only 1 out of these 101 cases) to severe.

But somehow such findings are either unknown to, or don’t raise any questions at, the University of Minnesota Center for Genome Engineering lab. Though Kennelly makes no mention of a communication partner, the more plausible explanation for insights attributed to her in the lab, and the only non-paranormal explanation for Emelia’s raison d'être on the Telepathy Tapes podcast—is that an adult, non-disabled communication partner is controlling her messages.

Only at one point does Kennelly’s narrative turn from the S2C-generated output to Emelia’s unimpeded behavior:

One of our favorite moments came when Emelia got to pipette for the first time. True to form, she used it to squirt us with water, giggling with delight. It was the perfect reminder that behind all her brilliance, Emelia is also just a kid who loves to have fun.

How she is able to do this despite the above-alleged “disconnect between her brain and body” is left unexplained. But here, at least, Emelia is clearly being herself.

Kennelly insists that

Emelia is a powerful example of how much potential lies beyond conventional expectations.

To this, she adds the usual neurodiversity-promoting bromides:

As a scientific community, we have a responsibility, and an opportunity, to do better. We must celebrate and nurture all forms of intelligence, creating inclusive spaces where neurodivergent voices are not only heard but truly valued and uplifted.

And she concludes with a quote from one of the S2C messages generated by Emelia:

“Sharing what I know is one of my biggest challenges. And I know a lot! Please don’t underestimate me.”

To this Kennelly responds:

We hear you, Emelia. Loud and clear.

Unfortunately, I’m not sure they do.

REFERENCES

Tess et al. (2023). DDX3X Syndrome: Summary of Findings and Recommendations for Evaluation and Care Levy, Pediatric Neurology, Volume 138, 87 - 94

 

Our communication rights paper is out!

Despite all the pressure from self-styled neurodiversity and disability rights advocates who support facilitated communication, Rapid Prompting Method, and Spelling to Communicate, a reputable journal dared to publish it

You can access the entire article here.

Jefferson Public Radio on “Medford psychiatrist’s research into autism and telepathy sparks debate over communication”

Continuing my closer look at some of the news items from our recent news roundup, I now turn to a May 2nd piece on Jefferson Public Radio entitled Medford psychiatrist’s research into autism and telepathy sparks debate over communication. This new item showcases Johns Hopkins-trained psychiatrist Dr. Diane Powell, whose name should be familiar to anyone familiar with the Telepathy Tapes as the Telepathy Tapes’ star, pro-telepathy scientist.

While the article’s focus is on Powell and on how she came to believe that non-speakers are telepathic, it is also, necessarily, an article about RPM/S2C.  That’s because a video-taped RPM/S2C session that Dr. Powell has “watched countless times” is part of what convinced her—or so journalist Justin Higginbottom suggests. As he describes it:

On the screen is Haley, a nonverbal child with autism, sitting next to a therapist. Across the room, her mother lifts a card off the table, showing the image on it — a triangle — to the camera, but not to Haley.

The therapist, holding an electronic letter board that resembles an iPad, asks Haley to spell what’s on the card.

Slowly, Haley taps out the answer.

She presumably types out “triangle,” which is correct.

“You can see the therapist is not moving this device,” Powell noted.

Haley repeats the feat over and over again, slowly typing out words that match the image on the cards.

Like the January 10th Disability Scoop piece (see here), this piece does acknowledge the controversy surrounding RPM/S2C:

The debate comes down to that therapist in Powell’s video holding the letterboard while Haley spells out words. Supporters say it’s a breakthrough for many with autism. Critics say it’s a red flag.

And Higginbottom even goes so far as to speak, at length, with one of the directors of the American Speech-Language-Hearing Association (ASHA)—something that very few journalists covering RPM/S2C in the popular media have bothered to do:

“Spelling is not the issue. It's doing it independently,” said Jaime Van Echo, associate director of clinical issues at the American Speech-Language-Hearing Association (ASHA).

The organization is generally against communication practices involving heavy assistance from another person. That could be someone touching the nonverbal individual’s arm, prompting them in certain ways or even holding a letterboard in front of them.

“The main difference here is that… they're holding the board, which means that the other person, who's the independent communicator, is communicating with the support of another person,” Van Echo said. “And what ASHA really does strive for is independent communication.”

Someone using a letter board that’s lying on a table is perfectly fine, according to Van Echo. But problems may arise, according to ASHA, when someone else is involved in the conversation.

It might seem like a small distinction. But the group has gone as far as saying another assisted practice, called the Rapid Prompting Method, “effectively strips people of their human right to independent communication.” The organization has spoken out against teaching a similar method, called Spelling to Communicate, in schools.

But then Higginbottom, who is clearly striving for “balance,” returns to the pro RPM/S2C side:

But proponents of these assisted methods argue many with severe autism struggle with motor skills or focus. Without assistance, they say, the opportunity to communicate may be lost.

This is something he could have run past Van Echo at ASHA; if he had, he would have learned that claims about difficulties with motor skills or focus don’t validate FC/RPM/S2C.

Worse, Higginbottom takes on faith a claim made in Heyworth et al.’s highly problematic Presuming Autistic Communication Competence and Reframing Facilitated Communication article:

A 2022 Frontiers in Psychology article cited more than 100 peer-reviewed studies confirming people with autism are the ones communicating while using assisted methods.

If you read that article carefully, you see that it simply states that “peer-reviewed studies confirming autistic or disabled authorship of FC messages number over a hundred from the 1990s to the present” and then cites an article by Cardinal and Falvey (2014). If you chase down that footnote, you find that Cardinal and Falvey, in turn, state, without any supporting citations, that:

Since the inception of FC, well over 100 qualitative articles have been published in professional peer-reviewed journals, as compared with around 40 for quantitative studies.

One of my colleagues tried contacting both Cardinal and Falvey and asking them for a reference; she received no response.

Extraordinary claims like these require extraordinary evidence, and in Cardinal and Falvey’s citations, which number less than 80, there are, at most, 13 studies that could possibly qualify as peer-reviewed studies finding some weak support for (and not coming close to confirming) autistic or disabled authorship of FC messages. In general, as Scott Lilienfeld has said, there is an inverse relationship between study rigor and support for FC/RPM/S2C.

Apparently not realizing this, Higginbottom goes on to cite the highly problematic pro-S2C organization International Association for Spelling as Communication (I-ASC) and its citation of the highly problematic Jaswal et al. (2020) eye-tracking study.

The International Association for Spelling as Communication cites a study that tracked the eye movements of non-verbal individuals. It found that they appeared to focus on the correct letters before selecting them — proof that people with autism, not their aides, are the ones communicating.

No, “appearing to focus on the correct letters before selecting them” is not “proof” that the people being subjected to FC/RPM/S2C are the ones communicating (for details, see critiques here and here).

But then Higginbottom returns to the FC/RPM/S2C critics:

But other researchers disagree. A 2001 meta-analysis published in the Journal of Autism and Developmental Disorders reviewed studies on a related method known as Facilitated Communication. It found the facilitators, rather than the nonverbal individuals, were controlling communication.

In the end, though, “balance” wins out:

So, it’s safe to say that the science around this debate isn’t settled.

Actually, the science is quite settled, and all those instances of alleged telepathy that both Dr. Powell and the Telepathy Tapes podcast have compiled for us, the non-paranormal explanation for which is facilitator control, only settle it further.

Worse, the article captions one of its pictures with this:

Some have found success in using letter boards to communicate with people with severe autism.

Technically, “find success” is ambiguous: the success could be an illusion. But this is also a stand-out sentence: one that is sure to grab the attention of, and stick in the minds of the many people who won’t read the full article.

Returning to Powell and telepathy, Higginbottom does note that:

Although the Telepathy Tapes and Powell’s work have led to more parents learning about their method or similar systems, advocates think being associated with mind reading is hurting their efforts to gain wider acceptance for assisted communication.

In that last excerpt, Higginbottom links to the statement on telepathy by the International Association for Spelling as Communication (I-ASC). For those who are interested, here’s what Vosseller & Co have to say about telepathy:

I-ASC does not integrate or endorse telepathy or other such personal beliefs as part of S2C. Introducing such concepts into S2C compromises the integrity [sic] and credibility of this rigorously defined [sic] methodology.

Recent public discussions linking telepathy to nonspeaking individuals and S2C risk creating misunderstandings about the practice. I-ASC emphasizes that telepathy is outside the scope of S2C and unrelated to its science-based [sic] approach.

One can only hope that telepathy is hurting I-ASC’s efforts to gain wider acceptance.

But Higginbottom ends with a different sort of hope, or “hope.” In a concluding section entitled “Hope for Parents,” he tells us about a non-speaking girl who, at age 10, “gained a limited ability to speak.” She, too, is apparently telepathic, but her telepathy has expressed itself through speech; not S2C. Her mother reports that she was once:

deciding whether to pack a grapefruit in her daughter’s lunch, and Ginny — unprompted — yelled “grapefruit" from another room.

Yet, for all this, the mother wants to switch from speech to S2C:

But she has trouble communicating with her daughter — even with the mind reading. That’s why she wants to teach her to use a letterboard.

Higginbottom continues:

As Dr. Powell explains, the beliefs that “her daughter is in there” and that she has “far more capacity than people give [her] credit for”—beliefs that Powell appears to share—“is why her research resonates with so many parents.”

Indeed—as with so much of other autism quackery, so, too, with S2C and telepathy.

REFERENCES

Beals, Katharine (2021, May 12). A Recent Eye-Tracking Study Fails to Reveal Agency in Assisted Autistic Communication. Evidence-Based Communication Assessment and Intervention, DOI: 10.1080/17489539.2021.1918890

Cardinal, D., & Falvey, M. (2014). The Maturing of Facilitated Communication: A Means Toward Independent Communication.
Research and Practice for Persons with Severe Disabilities, 39:3, 189-194. 10.1177/1540796914555581

Heyworth, M., Chan, T., & Lawson W. (2022). Presuming autistic communication competence and reframing facilitated communication. Frontiers in Psychology.

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

Vyse, Stuart. (2020, May 20). Of Eye Movements and Autism: The Latest Chapter in A Continuing Controversy. Skeptical Inquirer.

 

Cincinnati local news and NPR Weekend Edition on Jakob Jordan

Continuing my closer look at some of the news items from our recent news roundup, I now turn to three items that focus on the son of Cincinnati radio personality Jenn Jordan. The first is an April 10th interview on WLWT News 5 Today (a news station out of Cincinnati) entitled Son of Cincinnati radio personality defying the odds during Autism Acceptance Month.

The focus of this interview is Jenn Jordan’s non-speaking, autistic son, Jakob, who is described as “using his platform to defy the odds.” But even though he’s right there, sitting next to his mother, Jakob’s platform does not include this interview. Instead, Jenn is the one being interviewed. Jakob’s “platform “turns out to be S2C, described here as “communicat[ing] through spelling.” During the interview, Jakob is almost entirely silent. It’s hard to tell whether he’s even attending: he rarely directs his eyes towards the interviewer or his mother. And, for reasons that we learn only later in the interview, no S2C occurs here, nor are there any letterboards in sight.

Referred to mostly in the third person, Jakob is described as having been “diagnosed with autism and apraxia.” And while there is little doubt autism diagnosis, the basis for the apraxia diagnosis remains unclear. According to Jenn Jordan:

The apraxia causes a brain-body disconnect. And so the body doesn’t do what the mind wants it to, including speaking, including trying new foods. Refusing to try anything new.

There are various types of apraxia with varying diagnostic symptoms, but none of them fit Jordan’s description. Being minimal speaker doesn’t suffice. Nor does apraxia involve not being able to try new things. Finally, the notion that Jakob has some sort of brain-body disconnect is belied by the 10-second clip we see of him, 2 minutes into this segment, performing a series of complex dance movements in synchrony with the people around him. In addition, at the end of the video, we hear Jakob utter words that sound like “What date?,” and that his mother interprets as Jakob intentionally asking when the movie he’s staring in will come out (more on that below). Even Jakob’s speech, minimal though it may be, appears to be under intentional control by Jakob’s brain.

Nonetheless, in an eerie echo of Isaiah’s story in Disability Scoop (see my previous post on that), Jakob’s S2C-generated messages informed his mother that:

he was tired of eating the same old stuff, he wanted to try new stuff and he told us exactly how to help him. Since then he has tried over 160 new foods.

It’s interesting to see, both in this news item and the earlier one on Isaiah, a purported apraxia/mind-body disconnect being used to explain, not just Category A of the diagnostic symptoms of autism (the communication challenges), but also Category B (the restrictive interests). Though this is the first time I’ve seen restrictive interests re-analyzed as a motor disorder, it’s completely consistent with the decades-long goal of FC-proponents to redefine all of autism as a motor disorder.

Jenn Jordan goes on to explain that “If you want different results you have to do things differently,” and to recount how, after Julie Sando from Autistically Inclined (on our list of S2C-providing organizations) introduced S2C to Jakob:

It became very clear very quickly that the intellectual disability he had been diagnosed with was completely a mislabeling.

And thus, yet again, we see the deeply ableist, anti-intellectual disability sentiments that underpin parents’ and proponents’ beliefs in S2C.

As for Jakob, he doesn’t appear responsive even when the interviewer addresses him by name—until his mother responds by turning to him and making physical contact. She seems to do this reflexively each time the interview addresses her son directly. Why doesn’t she instead hold up a letterboard for him and facilitate out messages? Eventually we learn the answer:

This is so very hard for him because there is so much in here that he wants to say and someday he’ll be able to do it with me. We’re working on it.

The reason there’s no letterboard or S2C here is that Jakob is unable to do it with Jenn; or, perhaps more accurately, Jenn is unable to do it with Jakob. Why she didn’t bring along Jakob’s communication partner is left unclear.

Jenn’s inability to do S2C with Jacob recalls the Talia Zimmerman story (see here), in which we learn that those subjected to RPM/S2C “are far more proficient at spelling when they’re working with their professional partners than with parents, siblings and others.” As I noted in that post, in comparison to most facilitators, who bypically have months or years of experience cueing multiple people, parents are comparative novices.

Towards the end of the interview, we learn from Jenn Jordan that Jakob was

recently contacted by a Hollywood casting director who saw his Cards by Jakob page on Facebook and asked if he would be interested in auditioning for a film.

Ultimately, Jakob landed a leading role, and a subsequent news segment us more about this—namely, a June 5th segment on a much more prestigious platform: NPR Weekend Edition.

This segment, entitled Two nonverbal actors star in a new opera — with an assist from AI, includes not just Jakob, but a second non-speaking actor with cerebral palsy. And rather than spelling out the details of how, precisely Jakob communicates, it focuses instead on

• the novel elements of the technology that converts Jakob’s “spelling” into naturalistic voiced output, and
• the supposed input regarding the technology by “the non-verbal community”

In other words, this NPR report completely leaves out the fact that Jakob and other members of the non-verbal community are being facilitated, and their communications likely authored, by their FC/RPM/S2C communication partners.

It was a five-year process. For the first two years, accessibility designer Lauren Race queried the non-verbal community about what they wanted from a new speaking device. She asked, "What do you want with this thing? What's wrong with it? What do you love? What do you hate?"

"There's this mantra that everybody in this community uses," said Prestini, "which is 'nothing about us without us.'"

Or, rather, “nothing about us without our facilitators.”

Or, rather, “nothing about the personas concocted by the facilitators without the facilitators who concoct those personas.”

Throughout the piece, remarks about technological developments and the input of non-verbal people continue to distract from the communication-rights-violating elephant in the room. One caption reads:

Jakob Jordan tries out the technology that allows him to add emotional content to his speech by speeding it up, slowing it down, and adding pauses.

We also hear the usual pro-FC/RPM/S2C conflation of FC/RPM/S2C and AAC (Alternative and Augmentative Communication, evidence-based and not facilitator-controlled). Here, the conflation is especially easy, given that the role of the S2C communication partner is completely omitted:

Some nonverbal people, like Jordan, use an augmentative and alternative communication device, or AAC device, to talk. They type words into the device and a voice reads them.

But the voice sounds emotionally flat — like a robot. The team fed the AI some of the natural sounds both Jordan and Zioueche made, and it created voices for them.

Inevitably, as well, we get the usual S2C-generated testimonials:

“As someone who was not able to fully communicate for the first 22 years of my life, it is mind-blowing to be in an opera and to be here sharing on NPR.”

And:

“When I first heard the sound of my voice come to life, a new realization was born," he said through the new device. "Dream the bigger dreams, you know, the ones you dismiss and hide away because they seem impossible."

It’s because of articles like this (and this and this) that I stopped donating to NPR. I now direct that money to the Internet Archive, which has kept alive an older FC-critical documentary from more journalistically responsible times of yore.

The last piece about Jakob takes us back to Cincinnati, this time to Local 12 News. This segment, dated July 3rd, is entitled My world has opened up': Son of local radio host changes life through tech, therapy.

Once again we learn about Jakob’s brain-body disconnect:

He was using his device to share his favorite foods during a recent trip to Las Vegas to see his favorite band, New Kids on the Block. Two years ago, such communication would have been impossible for Jakob Jordan, who struggled with a disconnect between his body and brain.

But this time we learn more about Jakob’s first S2C session, which features, as so many of these sessions do, the typing out of a sophisticated vocabulary word:

after discovering that he could spell and read, his mother collaborated with speech therapist Julie Sando to unlock his potential. The first word Jakob Jordan typed was "analogy," and he understood its meaning.

As I noted earlier, one of the main goals of the first lesson is to get the parent coming back for more, and one of the best ways to do that is to dazzle them by “unlocking” sophisticated knowledge or vocabulary that they had no idea their child had acquired.

For me, the most impressive things about Jakob are neither his purported vocabulary and literacy skills, nor the fact that he has an S2C-enabled role in a musical. Rather, what impresses me are the clip of Jakob dancing at about two minutes into the first segment, which I watched several times, finding it quite endearing; and the pictures on the cards credited to him in Cards by Jakob, which I’m assuming are his own authentic work. It seems reasonable to presume that Jakob has the competence to control his body, and it looks like he has artistic talent and enjoys using it. He also looks like a calm, happy person.

Let’s celebrate all that—and, most importantly, celebrate Jakob for who he really is.