Disability Scoop on “Communication Method Finally Gives Nonverbal Woman A Voice”

In the next few posts, I’ll be looking at some of the news items from our recent news roundup in greater depth. Proceeding in chronological order, I’ll begin with the January 10th article in Disability Scoop (Communication Method Finally Gives Nonverbal Woman A Voice.)

This article presents the usual miracle cure story of someone opened up by S2C. Less usual is the person it showcases, Talia Zimmerman. Many S2Ced individuals are characterized as having gone through some sort of regression. Usually this happens around the age of 1 ½ or 2, right around the time that children typically receive their first MMR vaccine (which is why, confusing timing with causality, so many people have claimed that the MMR vaccine causes autism). But Talia regressed at a later age (age 3) after having developed more language than is typical in regressive autism: she regressed after being able to form simple sentences. This sounds like what the DSM-IV called Childhood Disintegrative Disorder—a condition that generally has a much worse cognitive and social prognosis than other forms of autism. (Childhood Disintegrative Disorder is now subsumed, for better or for worse, under the DSM-5’s Autism Spectrum Disorder).

Post regression, Talia Zimmerman was still able to communicate, though almost exclusively “in single words, usually to describe basic needs —‘water,’ for example, and ‘ice cream.’” And so things continued for the next twenty years, until her parents stumbled into S2C.

Sara Glaser, the article’s author, characterizes S2C as a “relatively new communication method” (Elizabeth Vosseller “invented it” a decade ago) and as “pointing at letters on a panel held up by a trained practitioner” (as if there’s some special training, specifically, in how to hold up a panel).

Citing proponents’ claims, Glaser covers the usual talking points:

• The alleged mind-body disconnect in non-speaking autism. “[M]ost nonspeakers have the cognitive ability to communicate. But their bodies don’t let them.”

The best that S2C proponents have been able to come up with as evidence for a mind-body disconnect are articles showing that some fine and gross motor difficulties occur at higher rates in autism (see our critique of such articles here). As for why so many of these individuals are able to speak words to express basic needs, but not to communicate more complex sentences: that’s something that no S2C proponent has ever been able to explain, try as they might.

• Pointing to letters as involving “gross motor skills, powered by large muscles, and not fine motor skills, which are typically significantly impaired by autism.”

Pointing to letters is actually a fine motor skill; only the more complex fine motor skills, like manipulating objects or writing by hand, are (sometimes) significantly impaired in autism. Indeed, there’s no evidence that pointing per se, as a motor skill, is impaired in autism. Rather, consistent with the eight-decades-long clinically-based criteria for autism as a social communication disorder, only pointing as a communicative act is impaired in autism. Individuals with profound autism are able to stick their index fingers out and point them towards things; what trips them up, rather, is understanding that pointing is a useful communicative act that can be used to call other people’s attention to things.

• The alleged virtues of “presumed competence,” specifically in the non-speaking individual’s ability to communicate.

Whether it’s communication skills, literacy skills, or math skills, and whether the person you’re trying to help does or doesn’t have a disability, assuming that they already have an ability is a poor starting point for actual success. Would you want your Spanish teacher to skip over the basics and start speaking to you in fluent Spanish? Or your flight instructor, also presuming competence, to throw you into the pilot’s seat on day one?

• How “presume competence” is assumed from the very first S2C “lesson,” which often seems to focus on astronomy or earth science: in this case, the facilitator “reading a passage about the International Space Station.” (See also here.)

I’m guessing that part of what’s going on here is customer development. Surely that first lesson, though purportedly aimed only at the student, is largely for the parents as well. One of the key objectives is to get parents coming back for more, and one of the best ways to do that is to dazzle them by “unlocking” sophisticated knowledge or ideas that they had no idea their children’s brains contained: from sophisticated vocabulary like “amber” and “fossilization” to songs they’ve composed in their heads. Or by eliciting heartwarming messages and reassurances like “I love you mum” and “Great life is ahead.” What we don’t seem to get at these first sessions are more mundane messages like “I’d prefer it if you didn’t keep whisking the board away,” and “Why are you blocking me off in the corner of the room?”

• The notion that the practitioners are “absolutely not prompting their clients.”

This is a common fallacy, not just among the people observing facilitators (see, e.g., here), but among the facilitators themselves: many facilitator prompts, cues, and board movements are subconscious yet powerful enough to completely control messages.

• The notion that the “biggest proof” of this is “when [their clients] tell us something we don’t know.”

Since they resist formal message passing tests, “something we don’t know” might not be an objective fact like what’s in a picture that the facilitator didn’t see, but rather something sort of unverifiable thought, memory, feeling  that the facilitator unwittingly attributes to the person they’re facilitating, like “I prefer classical music to gospel,” “I remember Big Ben and the soldiers with enormous hats,” or “We who have autism are semi-detached from the flow of time.”

• The notion that the worst thing a parent can hear about their child is that they have an intellectual disability: “Every assessment, they would use the phrase, ‘severe intellectual disability.’ That’s what they kept saying,” said Lisa Zimmerman [Talia’s mother]. “But there was part of me that always thought she could do more.”

I can’t think of a single parent testimony about the virtues of S2C that doesn’t include the tremendous relief the parent(s) felt when they learned that, or were confirmed in their faith that, their child wasn’t intellectually disabled, despite all the medical reports to the contrary.

Glaser does acknowledge that S2C is controversial:

A related program, called facilitated communication, has been largely discredited due to evidence that the facilitators were prompting their nonspeaking clients, in part by holding or guiding their hands.

Spelling to Communicate, too, has detractors. The American Speech-Language-Hearing Association (ASHA) recommends against its use, arguing that it “strips people of their human right to independent communication because the technique relies on an aide for prompting,” according to the organization’s website...

And she does include a few telling details:

• On reported rates of use: Glaser reports that the S2C advocacy organization, the International Association for Spelling as Communication, estimates that approximately 10,000 non-speakers are using the method.
• On cost: Glaser notes that, since “Most accredited schools don’t use it. Insurance won’t cover it, she said, people are typically paying out of pocket—to the tune of $85 an hour.”

$85 an hour—for many hours a day, presumably, especially if the parents aren’t able to do it themselves (see below). That’s why the aforementioned customer development is so important.

• On alleged success rates: “DiTomaso  [co-owner of the Access S2C clinic, on our growing list of S2C peddlers] said the program has worked with all of their clients thus far” but adds that “some are quicker to adapt to the letter board, can answer more sophisticated questions and are able to more quickly progress to a keyboard.”

In other words, all their clients are susceptible to cueing, but some are more susceptible to cueing than others.

• On what took for the parents to fall for it, despite knowing that it’s controversial.
• For the mother, it was a combination of the S2C miracle cure memoir Underestimated; viewing a live S2C session; and the failure of all other interventions “from speech therapy and applied behavior analysis to chelation therapy [a quack therapy involving the dangerous removal of heavy metals from the body]” to have the effects she was hoping for. As she puts it, “This is the only thing that has worked. You watch these young adults spelling — I don’t know what else people need.”

From what we’ve seen, the mother’s trajectory is typical. Nothing else works; this seems to work for other people.

·        The father, on the other hand, “admits to being skeptical.” When his daughter started spelling out answers to questions about the International Space Station, his first reaction was “Where’s the trick?” and “This is like a magic show.”

This is a much more accurate characterization what’s actually going on with FC/RPM/S2C than what the proponents claim.

·        Both parents remain unclear on where their daughter “learned how to spell and acquired so much knowledge.”

·        But the father, having moved beyond magic tricks, now hypothesizes that his daughter learned about, say, the Mona Lisa “while watching a TV program with him on Italy;” that “she picks up information in ways that other people don’t;” and that “her brain absorbs information at a greater depth than other people.”

We’ve seen this sort of explanation repeatedly: the unexpected knowledge that S2C unlocks purportedly comes from brains that are unusually good at absorbing oral and visual information in the ambient environment, including from TV and radio.

• That those subjected to S2C, Talia included, “are far more proficient at spelling when they’re working with their professional partners than with parents, siblings and others.”

We’ve seen this repeatedly (e.g., here, here, and here). It’s likely a reflection, in part, of the selection bias in who becomes a facilitator (being a true believer from the get-go) and a reflection, in part, of the reality that people get better at (unwittingly) cueing people over years of practice with many different clients (such that parents, compared to facilitators, are total novices).

Of course, the practitioners have a completely different explanation: doing S2C is purportedly, as Glaser puts it, “more emotional with a parent” and “more stressful.”

• That this girl, like so many of those subjected to S2C, doesn’t read books or other texts: “She’s never picked up a book, never surfed the internet that I’m aware of,” her mother notes.

Spellers but not readers—we’ve seen this repeatedly as well. And it’s one of many red flags that raises serious questions about actual literacy and actual language comprehension in FC/RPM/S2Ced individuals. And that should have raised serious concerns with this article’s author, journalist Susan Glaser.