Wednesday, September 3, 2025

University of Toronto Magazine on “When Words Won’t Cooperate”

In this post, I’ll focus on a second news item from my recent news roundup: a January 23rd article in the University of Toronto Magazine entitled When Words Won’t Cooperate.

In this article, journalist Alison Motluk focuses how a neuroscientist in the University of Toronto psychology department, Morgan Barense, “aims to crack the mystery of non-speaking autism.” The mystery, apparently, has to do with how much spoken language non-speaking autistic individuals understand. But this is something for which non-neurological measuring tools already exist (e.g., oral prompts and pictures to point to in response). And those non-neurological measuring tools have found language comprehension in non-speaking autism to be quite low, especially in those with motor skills impairments (Chen et al., 2024). (In Chen et al., motor skills were measured by something called the DCDQ. The DCDQ rates complex motor skills like throwing a ball and pointing, as opposed to simple ones like pointing, which, contrary to the claims of FC/RPM/S2C proponents, don’t appear to be impaired in non-speaking autism). Motor skills impairments, in turn, have long been the excuse for FC/RPM/S2C.

Motluck opens with a description of an autistic boy named Isaiah Grewal. At age 2, Isaiah was not only non-speaking, but also not “responding normally when people spoke to him.” This suggests that Isaiah’s language challenges included not just speech but also comprehension—just as Chen et al. would predict. Indeed, even at age 10, when Isaiah was still not speaking, “His parents couldn’t tell from his reactions whether he understood what they were saying.”

But, like many individuals with autism, including individuals with low comprehension skills, Isaiah showed signs of hyperlexia. That is, he would “use foam letters or fridge magnets to spell things out — words like ‘contents’ and ‘bonus material’ that he’d seen when watching a Baby Einstein DVD.” And this hypelexia of his seems to be what caused his mother, sensing that “there was more cognitive ability in him than was being tapped,” to try out S2C on him when he was 13.

Some of the messages attributed to Isaiah through S2C are those we’ve seen repeatedly (see also my previous post): being able to communicate amounts to “freedom from prison,” and the whole time he was in that prison he wanted people to know “That I’m in here.”

But among the first messages attributed to Isaiah are a few that were far less typical. They included, for example, messages about restaurant food like this one: “I want to eat off a menu like a normal teen.” Since “new foods had always upset him,” this message was enough to “stun” his parents. Via S2C, Isaiah purportedly explained what was actually going on. As Motluk puts it:

[He]e’d wanted to eat the new foods, but he didn’t have the motor control to do it. The same muscles that made it impossible for him to speak, he told them, made it impossible for him to eat those things.

That’s something I’d never heard before, so I looked up the research. One review of extant studies finds a disjunction between speech-motor challenges and oral-motor challenges; another (a scoping review)  finds a connection and reports that these can occur in autism. However, Isaiah’s ability to eat “fries and nuggets and chocolate” for years, but not “new foods,” doesn’t quite sound like an oral motor challenge.

Furthermore, the purported solution to Isaiah’s purported oral motor challenge is oddly simple. Via S2C, he purportedly advises his parents on how to get him to eat new things: “Push it into my mouth again. Chop it into squares. Say chew, chew, chew in a rhythm.

We don’t learn how this advice played out. Did his parents actually push food into his mouth? How did he react? All we learn is that, as a result of this advice, they were able to celebrate his 18th birthday at a fancy restaurant, where he “ordered lobster mac and cheese, from the menu.” How this played out in terms of chewing is left unsaid. Mac and cheese is another common preference among those with limited food preferences, and it’s at least as chewable as fries, nuggets, and chocolate are—though the lobster, perhaps, adds a bit of a twist.

One thing that’s alarming about S2C is how the messages facilitated out of its victims often appear to be at odds with what they appear to actually prefer, and how the assumption that they can’t control their bodies causes their handlers to let their S2C-generated messages trump what their behavior and body language communicates. In Isaiah’s case, this happens not just with food, but with music. In an eerie echo of Anna Stubblefield’s infamous facilitation of Derrick Johnson (where an alleged preference for classical music also emerged), the article reports that “once he [Isaiah] was able to communicate using the letter board” he revealed that he “liked classical music and jazz... but not rock or pop.”

These issues, however, don’t appear to worry Dr. Barense, the neurologist who’s studying Isaiah. From her, we instead hear the usual talking points:

·        The straw men caricatures of FC/RPM/S2C skeptics.  “People assume, she says, that if a person can’t speak, they must be intellectually impaired.” Does she think people assume this of deaf people? Or of Stephen Hawking?

·        The alleged apraxia. Barense “believes that many autistic people who don’t speak may be hindered not by problems of intellect but motor control,” specifically “apraxia.” The word “believes” is appropriate here: Barense continues the long tradition of citing no evidence for apraxia in non-speakers (there isn’t any).  She also doesn’t seem to be aware of the Chen et al. study and what it says about how problems of with motor control in non-speakers correlate with comprehension deficits.

·        The circular reasoning. Barense uses S2C-generated messages as evidence for the “apraxia” that is, in turn, evidence for S2C:

Some non-speakers who have been able to describe what’s going on inside say it’s like being stuck in the body of a drunk toddler, says Barense. They don’t know why they’re suddenly vocalizing Mickey Mouse or talking about Thomas the Tank Engine or running around frantically. They don’t want to be doing these things, they say, but their bodies are like runaway trains.

·        The notion that there are no non-neurological ways to measure cognition in non-speakers: “there are no reliable ways to estimate comprehension, language ability and intellect” because all of these “ require motor output... that some people simply may not have available to them.” But all that’s required for tests of language comprehension and intellect is pointing to or picking up pictures (for language) or cards that complete patterns (for intellect), and there’s no evidence that non-speakers with autism have difficulty either with pointing to things or with picking things up. Many routinely and successfully do one, if not both, of these. For further discussion of what the actual issue with pointing in profound autism is, see my last post.

Dr. Barense, however, thinks she has an answer, which just happens to align with her general area of expertise as a neuroscientist:

Using fMRI, she and her team will look for complex patterns of brain activity that reflect high-level comprehension but do not require motor output. For instance, as a person listens to a complicated story, the researchers can track the signal in their brain as that story is unfolding. When there’s a twist in the plot, or a disruption of the narrative, they can see how the brain signal changes in response.

This sort of “signal change” strikes me highly indeterminate, especially when compared to the standard, non-neurological measures of comprehension in autism (see again, Chen et al., 2024). Signal change, that is, could easily be generated by changes in vocal prosody (the melody, rhythm, and volume of speech), as opposed to actual comprehension of word meanings. But a sufficiently biased researcher may have no difficulty interpreting it that way—and publishing articles that report such findings. In this, Barense may qualify. As she puts it, “I have a strong prediction that we will find evidence of intact comprehension. I just don’t see how it could be otherwise.”

Motluk reports that:

Barense has so far completed a baseline magnetic resonance imaging (MRI) scan of the structure of Isaiah’s brain. Next will come scans of the brain in the process of completing intellectual tasks (known as “functional” MRI, or fMRI).

One of the challenges is that MRI scanning requires a subject to be still. And many autistic people have a lot of uncontrolled movements. Isaiah was able to be still for the 40 minutes of the scan only because of his years of motor training, says Barense.

I shudder to think what this was like for Isaiah—and at the likelihood that his consent for this was obtained through S2C and, therefore, wasn’t his.

Barense, apparently, “has applied for a grant to find ways for software to adjust for a subject’s movements” so that other S2C victims won’t have to be still when these procedures are inflicted on them. She is also “collaborating with a team from Johns Hopkins” to “use a recently developed neuroimaging technique to study motor activity in the brains of non-speaking autistic people, including Isaiah.”

Given what’s ahead for non-consenting S2C victims in terms of medical procedures like these, I find it ironic that Barense claims to feel that “it’s important to really listen to what non-speakers are telling us about their experiences and to allow them to inform the science.”  How about starting with a message-passing test that would establish who is actually doing the communicating?

Just like Barense, reporter Alison Motluk also assumes that Isaiah’s S2C-generated messages are his own.

I asked what autism felt like to him. Via keyboard, he answered, ‘Like swimming underwater 24-7 because everything feels hard to control.” I asked what he and his friends talk about when they get together online. “We mostly trash talk,” he responded. Then, later, after I’d stopped laughing, he said, “We just like to hang out in the same space and eat pizza.

“After I stopped laughing”—this isn’t the first time I’ve noticed a rather low bar for humor for facilitated kids. Is “presuming competence” turning into a “soft bigotry of low expectations”? But, superficially speaking, Isaiah has met high expectations:

Isaiah has an undergraduate certificate in professional communications from the Harvard Extension School [making him the second FCed individual we know of to enroll in this school—see here] and currently holds a graduate fellowship through Stony Brook University in New York.”

(See also our new list of colleges and universities that have admitted FC/RPM/S2C-using students.)

The piece ends with a poem, allegedly written by Isaiah.

When I first came across this article (it was forwarded to me by one of my fellow FC critics, Evan Oxman), I found her on Bluesky. She had posted about the article there, and I posted a comment. This resulted in a rather long, but cordial exchange (Barense was probably a bit more cordial than I was), which I’ve reproduced in its entirely below.

MB [This is her original post]: “I am in here!” It's a sentiment I've seen expressed time and time again from non-speaking autistic individuals who were thought to be unable to express their thoughts - but ultimately gained access to communication. Hearing this call, my research is expanding in some new directions.

It seems increasingly clear that motor control challenges are a key obstacle to their communication. It's not that they have nothing to say - it's that they have difficulty saying it. With neuroimaging, I hope that we can bypass these motor challenges and better assess their cognition.

KB: Have any of these non-speakers been assessed for apraxia? There are existing explanations for lack of speech in level 3 autism based on diagnostic symptoms. (Occam's razor). Since it isn't possible to dx speech apraxia in non-speaking autism, perhaps this is something that neuroimaging could assess.

MB: I agree, diagnosing apraxia is notoriously hard for those who cannot speak and I hope that neuroimaging can help here. But motor deficits are key associated features supporting an autism diagnosis in the DSM-5, and so most autistic individuals have motor deficits in their diagnostic profile already.

KB: Imaging for apraxia shld be your 1st step: you wouldn't want to bypass a challenge that turns out not to exist. Motor difficulties (=/= apraxia) are optional in the DSM; the social challenges are not. Nor do the motor challenges explain the language challenges: www.thetransmitter.org/spectrum/mot...

MB: I think the relationship between motor challenges and language challenges is very much up for debate, with a lot of work showing a tight coupling between the two. But we are absolutely looking at brain mechanisms of motor processing in this group - stay tuned.

I'll also say that given the modularity of brain function, it's entirely possible that there could be a vast disconnect between the ability to speak and the ability to understand. If one is profoundly apraxic, they would not be able to demonstrate understanding with any reliable form of behaviour.

KB: For sure there are ppl who can understand but not speak. In autism there's a tendency in the opposite direction. Many studies show a coupling of language acquisition (receptive & expressive) & degree of orienting to social stimuli-and (commensurate w/ this) low receptive language in profound autism.

MB: But if the primary underlying deficit is motor, one would also observe such coupling. Motor difficulties would prevent typical social behaviour and lead to an underestimation of receptive language. In some cases, this might be the simplest explanation (Occam's razor). That's our testable hypothesis.

KB: Much research finds reduced orienting to social stimuli in infants as young as 2 months who are later dxed w/ autism. Are you proposing that reduced social orienting is the result of motor deficits? That seems unlikely, but regardless, reduced social orienting massively derails language acquisition.

MB: Reduced social orienting could *absolutely* result from an abnormal sensorimotor system. This behaviour requires that the one (1) process perceptual info about the other person and (2) move in response. Either could be derailed by mechanisms that have nothing to do with high-level social processes.

KB: OK, I thought we were talking about motor, not sensory processing also. Regardless, processing of perceptual social information about other people is a prerequisite for language acquisition. Impaired processing (as we see in early infancy in autism) massively derails acquisition of receptive lang.

MB: It's hard to talk about motor without talking about sensory, given that they are right next to each other in the brain and the execution of any motor plan requires sensory info (this is why the term sensorimotor is so often used). But issues here will derail social behaviour, which will derail lang.

KB: Exactly. It is indeed hard to talk about motor without talking about sensory. But the reverse doesn't seem to hold: the lack preferential attention to social stimuli in 2+ month old infants later dxed with autism doesn't seem likely to have a motor component or motor-based explanation.

MB: I'd have to see that study, but they might not respond to social stimuli b/c they weren't getting the right (sensory) info needed to move their body appropriately (motor). Or maybe they had the info but couldn't mount the typical response. Or both. Or neither. Hard to disentangle without brain data.

KB: A motor-based explanation would have to somehow explain why there's attention to non-social stimuli but not to social stimuli. That would be quite a stretch. Here's one study showing such differential (social vs. nonsocial) attention: Maestro et al. (2002). doi.org/10.1097/0000... There are others.

MB: I don't think it's necessarily a stretch. It's well established that the motor system builds internal models of action that that can serve as templates to predict and interpret the actions of others (who move in more complex and unpredictable ways than non-social stimuli).

If these models are off b/c the motor system is abnormal, social behaviour will take the greatest hit. At any rate - let me do the studies and get back to you! We need more neuroimaging data in nonspeakers so we can understand the genesis of various profiles and tailor appropriate supports.

KB: Great! Important to note that it's not just social behavior, but social learning, incl. language acquisition, incl. receptive lang., that will take a hit--a huge hit. And worth questioning is the degree to which a "motor map" guides automatic orienting to social stimuli in infants < 6 months old.

[I haven’t heard from Dr. Barense since.]

 

REFERENCES:

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