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.

Twitter suspensions and their aftermath

Every so often my Twitter suspension comes up on social media, with various detractors of mine voicing different theories about why I was suspended from Twitter. 

FC/RPM/S2C proponents seem to think I was suspended for “bullying” remarks and/or “violent threats” against autistic individuals and/or autistic advocates. Crazy as this sounds, I have screenshots that show FC/RPM/S2C proponents actually saying this. (In the interest of basic decency, however, I'm keeping those screenshots private).

Structured Word Inquiry proponents prefer to think I was suspended because I called SWI a “cult” run by a shadowy and now deceased man in France with no formal linguistic credentials--a characterization of the man in question that, ironically, the person who first made this claim against me now agrees with. (I have screenshots to prove this as well but, again in the interest of basic decency, I'll likewise keep those private).

Progressive math proponents may think I was suspended for harassing them and finding fault with “social justice math.” (Who knows? It's not always so easy to see what people say beyond your back.)

And so on...

As for Twitter itself (this may have changed on X), once it suspends an account, it feeds such sundry impressions by one’s sundry detractors with canned messages about the account’s suspension that are automatically sent to anyone who “reported” the account for any reason.  People, naturally, report Twitter accounts for all sorts of reasons, many of which have nothing to do with Twitter’s rules. Some people, for example, prefer to eliminate their critics rather than debate them.

Unless you’re sufficiently famous, however (e.g., the past and present President of the U.S.), Twitter’s/X's suspension decisions aren’t made by human beings mulling over tweets, but by AI bots programmed to look for certain key words and phrases (“kill”, “smash”, “vaccine injury”). That’s because human moderation is costly, and because the number of human moderators needed to review every possibly bullying/threatening/ dangerously misinformative tweet is astronomical. Key word-based moderation, of course, is about as linguistically crude as it gets, and the result is that many suspensions are senseless. 

Twitter tattlers, of course, prefer to think that Twitter suspended their opponents for good reasons–i.e., because they reported them for bad behavior. But there aren’t enough people on Twitter’s staff for human review of more than a tiny fraction of what’s reported. And if Twitter’s bots were to automatically suspend everyone who gets reported by someone else, Twitter would eventually amount to little more than cat videos. 

None of these considerations–assuming they even occur to them–stop certain Twitter tattlers and their allies from proclaiming, without evidence, that their detractors have made bullying or threatening remarks on Twitter or elsewhere. And though one might challenge them, as I have, to find a single bullying or threatening remark in anything one has ever written anywhere, the sort of people who prefer to resolve disagreements by tattling, blocking, and suspending may not be the sort of people who think that accusations (or autism interventions, or reading instruction, or math curricula) should be supported with actual evidence.

As for my particular situation, I've known for several years now that my suspension was triggered by more than just certain key words. There was an actual human being involved (I have screenshots of that, too--it's quite the smoking gun). But because this person is near and dear to me, I have made a promise to that person not to disclose that person's actions publicly. The person in question, meanwhile, has expressed remorse for their actions (which also include twice deleting all the blog posts on this site) and has been making it up to me ever since.

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 23^rd 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