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
Posts
No comments:
Post a Comment