In which Vikram Jaswal fails to establish the authenticity of S2C for non-speakers

 Cross-posted at facilitatedcommunication.org.

In a recent episode of Barry Prizant’s Uniquely Human podcast entitled “Establishing the Authenticity of Supported Communication for Non-Speakers,” Vikram Jaswal, a psychology professor at the University of Virginia, attempts to make a case for the variant of facilitated communication (FC) known as S2C.

This is Jaswal’s first appearance on Prizant’s podcast, and the episode centers on an eye-tracking study that he co-authored four years ago (Jaswal, 2020) that purportedly shows evidence for S2C. The most interesting parts of the podcast, however, are the parts where Jaswal discusses IQ levels in non-speaking autism, facilitator influence, communicative independence, and what Jaswal (and Prizant) have to say about his critics, AKA “the naysayers.” The podcast also features a co-host, David Finch (“Dave”), who was diagnosed with Asperger’s syndrome by his wife.

Jaswal begins by recapping his experience with autism, characterizing himself as “new to autism” even as recently as 2015, when he was invited to talk about autism research at a summer institute—despite the fact that “I didn’t… know much about autism at the time.” The person who extended this rather surprising invitation was Elizabeth Vosseller, the founder of the summer institute and the “inventor” of S2C (or, more precisely, the person who, after being trained in another variant of FC known as the Rapid Prompting Method or RPM, rebranded that method as Spelling to Communicate or S2C). The summer institute was for “nine or ten non-speaking autistic young adults all of whom at the time were communicating by pointing to letters on a letterboard held vertically by a trained communication and regulation partner”—the hallmark of S2C. For Jaswal, witnessing this variant of FC was “a transformative experience,” and “To say that I was blown away is an understatement”. He adds:

It’s changed my life, it’s changed my research program, it’s changed how I think about the world, and about psychology and communication.

What Jaswal leaves out here (and pretty much everywhere else, including in the disclosure statement in his eye-tracking study) is that he has a non-speaking autistic daughter who uses S2C. According to a piece in the Washington Post written by Jaswal and his wife, his daughter was in second grade in 2016. This means that Jaswal was, in 2015, neither “new to autism” nor an unbiased observer

Indeed, by the time he attended Vosseller’s summer institute, as he makes clear on the podcast, Jaswal was already convinced that much of the longstanding research on autism was wrong. In particular, he was (and is) convinced that there is no Theory of Mind impairment in autism and that there is no cognitive impairment in non-speaking autism. Further strengthening these convictions were the messages he saw being extracted from the non-speaking attendees of Vosseller’s summer institute via S2C, and, perhaps, some additional interactions with other autistic people over the years:

Over and over again as I’ve gotten to know autistic people, of course they understand other people’s beliefs goals desires and they recognize that behaviors are motivated by underlying intentions.

To the extent that Jaswal’s (informal and subjective) impressions are based on messages extracted from non-speaking individuals via S2C, all the available evidence indicates that the people demonstrating these Theory of Mind skills are actually the non-autistic facilitators, or what S2C proponents call the “communication and regulations partners” (CRPs). Without a message-passing test that would establish who is authoring these messages, we can’t know.

As for the Theory of Mind research, Jaswal states that the experiments “were designed in a particular way that was not suitable to allow autistic folks to demonstrate their underlying” skills: claims that he has elaborated in a 2018 article which has been critiqued here and in an earlier post on this blog.

As far as the research showing low IQ in non-speaking or minimally-speaking autism goes (see Anderson et al., 2007; Wittke et al., 2017; Wodka et al, 2013), Jaswal has not published any critiques. Instead, he simply asks “How can somebody who doesn’t have a way to express themselves using language-based communication participate in a lot of standard IQ tests?” He has apparently forgotten that, in the standard IQ tests used with children, only the verbal IQ subsections of those tests require verbal communication. Indeed, that’s why studies of IQ in non-speaking children tend to focus only on nonverbal IQ, aka Performance IQ. The studies listed above are no exception, and they find that nonverbal IQ is significantly impaired in non-speaking autism.

Jaswal, however, cites a Canadian study that, he claims, challenges these results: a study by a “really progressive group of Canadian autism scientists” that used a “strengths-based approach” to investigate IQ in “a group of elementary school-aged non-speaking kids.”  Jaswal notes that their assessments required neither verbal responses, nor motor responses “that are different from those that they would otherwise use in their daily lives.” The study Jaswal is most likely referring to—the only one that fits this description—is Courchesne et al, 2015. The study he’s referring to, Jaswal claims, finds that most of these kids “actually scored within the normal range on the strengths-based IQ tests.”

The IQ test that Courchesne et al. used was a version of the Raven’s Progressive Matrices test: a test that places minimal verbal demands on those being tested, even for comprehending the test directions (which, importantly, can be an issue even with test questions that don’t require verbal responses). For that very reason, the Raven’s Progressive Matrices test is, in fact, a common way to assess IQ in autistic individuals with language impairments.

Seemingly consistent with Jaswal’s statement that the study’s IQ test didn’t require motor responses other than those that the children could perform in their daily lives, the version of the test that the researchers used, the Raven’s Colored Progressive Matrices (RCPM), doesn’t require pointing: something that many of the minimally-speaking autistic participants were unable to do. But, while there is evidence for a lack of (or reduced) pointing in autism, there isn’t evidence, as I’ve discussed in other posts, that lack of pointing in autism is due to motor issues. Proponents of S2C, of course, insist otherwise: for them, “unreliable pointing” results from fine motor difficulties that, in turn, justify the need for held-up letterboards. Pointing, however, isn’t just a motor activity; it’s also a communicative gesture, and reduced communicative gesturing is a hallmark of autism (Manwaring et al., 2018). Furthermore, in lieu of pointing, the RCPM test requires a different fine motor skill: placing one of “six movable pieces” into the empty space that represents the missing part of a multi-dimensional pattern.

Wikimedia Creative Commons

What about the study’s results? Contrary to Jaswal’s claim that most of the non-speakers scored within the normal range, the researchers found that:

• Of the 26 (out of 30) minimally-speaking autistic participants who completed the test, there was an average raw score of 18.61 out of 36.

• Their non-autistic counterparts had an average raw score of 28.5 out of 36.

• While eight of the autistic participants performed at or above the 50th percentile, with three at the 90th percentile, “autistic children's RCPM performance differed according to their reported spoken language level” with “autistic children using two-word phrases performed better… than those using no words at all.”

So much for Jaswal’s claim that a Canadian study using a strength-based assessment on non-speaking autistic elementary school students shows that most non-speakers scored within the normal range.

Moving on from Theory of Mind and IQ, Jaswal and Prizant rehash some of the other pro-S2C, evidence-free talking points:

• That individuals with autism have trouble controlling their bodies (see the sensory-motor section of our misleading articles page).

• That the big challenge in autism isn’t helping individuals improve actual communication skills, but giving them access to effective ways to communicate (as if all there’s no evidence of widespread communication challenges in autism, and as if there’s any evidence that responsible professionals are systematically depriving autistic people of effective ways to communicate).

• That it’s the people outside the world of S2C, not S2C proponents, who suppress and ignore the communicative gestures made by non-speaking individuals (see Beals, 2023).

The discussion then turns to the facilitator, or “communication and regulations partner” (CRP). Citing the messages facilitated out of S2C-ed individuals by their CRPs as testimonials, Jaswal claims that the purpose of the CRP is for “attentional, regulatory, emotional support.” He suggests that the S2Ced individuals’ emotional needs may stem, not just from co-occurring conditions like anxiety, but also from the “trauma” of having been long denied an effective means of communication. As for the possibility that CRPs might be the ones depriving autistic individuals of effective communication by controlling the messages, Jaswal minimizes this in several ways.

First, he claims that influence is “just part of the way communication works”. He cites Prizant’s affirmative head nods and states that these “giv[e] me the confidence to continue”—as if nodding while someone speaks is comparable to the influence that facilitators exert on message content. While acknowledging the concerns of FC critics about CRP influence on messages, he resolves this concern by (1) saying that this is something the non-speakers are “absolutely aware of,” and (2) changing the topic to how hurtful these concerns must be to non-speakers:

Imagine now that you’ve worked really hard on the skills to be able to communicate by pointing to letters with the assistance of a CRP and, and now you learn that there are people who don’t believe what you’re saying, that there are people who want to deny you access that method and related methods of communication. That’s only going to contribute further to somebody’s trauma.

At this point the conversation turns to Jaswal’s 2020 eye-tracking study (critiques of which are here and here), and Jaswal proceeds to repeat his mischaracterization of the ways FC critics say that facilitators can cue (and control) letter selection. That is, Jaswal depicts this cueing not as the automatic, non-conscious phenomenon that studies of FC and related phenomena have unearthed (see, e.g., Spitz, 1997) but as something that involves conscious interpretation and deliberate decision-making and would take more time than what he characterizes as the “fast clip” (he also calls it “very fast” typing) at which many of the participants selected letters. (Their actual speed was, on average, and as Jaswal confirms here, one letter per second, which most people outside of the Spellerverse would consider quite slow, even for single-finger typing[1]). With Prizant and Dave laughing along and perhaps also head nodding in agreement, Jaswal states:

There is some reason to think that there are limits on the human information processing ability to make use of cues from the environment in order to drive our behavior, so one example is like, you know, I don’t know about you, but like if you’re at a restaurant with your family and, uh, you know, one member of your family wants you to notice person’s shoes at the table next to you they might make a subtle cue—nod their head in a particular direction or roll their eyes over there and you have to notice the cue, interpret its meaning and then like decide how am I going to act based on that cue. So these things—this detection of the cue, this… noticing that it occurred, this… figuring out what it means, and then this action program after having understood it—like, those things take time. So each of those steps takes time. And so as I have spent time with non-speaking autistic people who spell, many of whom spell so quickly and so accurately that I think it’s just… beyond belief that they’re simply responding to cues that many of the rest of us wouldn’t be able to notice sitting next to them that the CRP or communication and regulations partner is offering.

It doesn’t seem to occur to Jaswal that some of the cues that critics are talking about require no interpretation or deliberation. These include:

• The CRP shifting the board so that the person’s outstretched index finger approaches a particular letter.

• The CRP moving their free hand in a movement that mirrors the movement that would be involved in a particular letter selection, doing so milliseconds before the S2Ced person makes that movement and that letter selection (see here for examples and discussion).

These cues are less like the deliberate, consciously interpreted restaurant cues Jaswal imagines, and more like the tactile pressure cues that immediately tell horses exactly where to turn and how fast to go, or the vestibular and proprioceptive cues that immediately tell cyclists exactly how to maintain their balance. These phenomena occur in well under a second, are largely non-conscious, and yet completely control a horse’s or a person’s movements.

Nor does it seem to occur to Jaswal that these sorts of cues are qualitatively different from the facial and social cues that many studies show autistic people to be under-sensitive to. On one hand, Jaswal dismisses these findings as purportedly as problematic as the Theory of Mind findings. On the other hand, he brings them up in connection with CRP cueing, claiming that, to the extent that FC critics believe these findings (we do), they would contradict our claims about CRP cueing (they don’t).

Jaswal also repeats another of his study’s key misconceptions: that since intentional acts involve looking, acts that involve looking are intentional. This is what allows him to conclude that, since the participants were, on average, looking ahead at the next letter a half-second before they typed it, they must have been intentionally pointing to that letter, and that it therefore couldn’t be the case that the CRP was moving the board. But looking ahead neither logically entails intentionality nor logically rules out board movements, nor does any of this rule out the possibility that the participants’ eyes were responding to the same cues that their fingers were—and/or were simply looking at whichever letter the CRP (however unintentionally) moved into their line of sight.

Prizant, Barry, and Dave then move on to the “naysayers.” Jaswal claims that they/we haven’t come up with any alternative explanations for his data, apparently unaware of the published critiques that do just that (Beals, 2021; Vyse, 2021). Dave, who calls himself an engineer but whom Prizant calls a “scientist,” proceeds to emphasize the importance of data. Prizant, confusing skepticism with non-evidence-based beliefs and lived experience with evidence [2], claims that it’s the naysayers who are the ones who are making assumptions and Jaswal who is being conservative with respect to the alleged evidence.

The conversation then turns to the CRP—with Jaswal citing research on how, in stressful situations, the physical presence of people we’re close to helps to keep us regulated. Connecting this to non-speakers, he notes how anxiety-provoking it must be when a school suddenly swaps out a child’s aide with a new aide. Jaswal doesn’t extend this to CRPs, but Dave does, and presumably Jaswal would agree that it’s also potentially anxiety-provoking when parent suddenly swaps out one CRP for another. Dave, for his part, compares the CRP to the “buddy” that company executives apparently always bring with them to meetings:

I can’t think of a single executive who rolls into a very high-level meeting without his little buddy there, whether it’s the attorney or the regional salesperson who’s there as a safety person to make sure that person’s message gets across. And  we don’t challenge that.

Finally, the conversation turns to the possibility of AI taking over some of the CRP’s roles, and Jaswal expresses certainty that, while some of the CRP’s roles might be automated and offloaded to AI, he thinks that there will always be a CRP present. And, of course, as long as a CRP is present, the likelihood persists that the S2C-ed messages are not the authentic communications of the S2Ced individual—even if the actual author is now some combination of the CRP and the AI.

Nonetheless, Jaswal is confident, not only that there is no significant influence by CRPs on messages, but also that some of the S2Ced individuals now type independently. But he also makes it clear that those “independent typers” do not actually type independently of their CRPs:

Among those who type independently they still benefit from the presence of another person who can serve as that… regulation partner and who is able to redirect them when their ADHD leads them astray, for example, or when their OCD leads them to focus on something that person who can help them get back on track.

Apparently, even when S2Ced individuals recover from their alleged fine motor control issues, dyspraxias, and mind-body disconnects, there’s still a lingering (diagnosed or undiagnosed?) ADHD or OCD…or?—anything to justify the continued presence, and influence, of the CRP.

Prizant and Jaswal conclude the podcast with a celebration of interdependence:

• Prizant: “Self-determination comes with support… You need that trusting person around you, that safety net, to take risks and get out there.”

• Jaswal: “We are interdependent… We are all relying on each other. Why should it be any different for a non-speaking autistic person?”

Dave adds that we depend on each other to help us see our blind spots, whereupon Prizant concludes the podcast with an allusion to “the elephant in the room”: presuming competence.

Presuming competence—that ill-advised but persistent mantra of FC/RPM/S2C proponents used to deter people from asking who is directing the messages and to justify their refusal to participate in rigorous tests that could answer this question. Fittingly juxtaposed, here, with blind spots.

NOTES

1. Perhaps in an attempt to explain away the slowness of the typing, Prizant compares it to typing in the confirmation code or frequent flyer code into an airport scanner: “You’re scanning the screen and visually searching out the next number in the code.” To this, Jaswal replies: “That’s a really good analogy.” But of course, typing out your actual thoughts using the familiar letter sequences of conventional spellings is quite different from typing in the arbitrary sequences in a confirmation code.

2. Prizant cites, as evidence, “Talking to dozens of families and parents and people who are spellers and typers which has been totally dismissed as any aspect of evidence here by the naysayers.”

REFERENCES

Anderson, D. K., Lord, C., Risi, S., DiLavore, P. S., Shulman, C., Thurm, A., et al. (2007). Patterns of growth in verbal abilities among children with autism spectrum disorder. J. Consult. Clin. Psychol. 75, 594–604. doi: 10.1037/0022- doi:10.1080/17489539.2 021.1918890 006X.75.4.594

Beals, K. (2021). A recent eye-tracking study fails to reveal agency in assisted autistic communication. Evidence-Based Communication Assessment and Intervention, 15(1), 46–51.

Beals, K. P. (2023). Sit down, shut up. Index on Censorship, 52(2), 60-61. https://doi.org/10.1177/03064220231183821

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. doi:10.103841598-020-64553-9 PMID:32398782

Manwaring, S. S., Stevens, A. L., Mowdood, A., & Lackey, M. (2018). A scoping review of deictic gesture use in toddlers with or at-risk for autism spectrum disorder. Autism & Developmental Language Impairments, 3. https://doi.org/10.1177/2396941517751891

Spitz, H. (1997). Nonconscious Movements: From Mystical Messages To Facilitated Communication. Routledge.

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

Wittke, K., Mastergeorge, A. M., Ozonoff, S., Rogers, S. J., & Naigles, L. R. (2017). Grammatical language impairment in autism spectrum disorder: Exploring language phenotypes beyond Standardized Testing. Frontiers in Psychology, 8, 532. doi:10.3389/fpsyg.2017.00532 PMID:28458643

Wodka, E. L., Mathy, P., and Kalb, L. (2013). Predictors of phrase and fluent speech in children with autism and severe language delay. Pediatrics 131, 1–7. doi: 10.1542/peds.2012-2221

Actually this is mostly about you—and (indirectly) about FC

 (Cross-posted at FacilitatedCommunication.org)

The 2021 biopic This is Not About Me, recently became available for a small rental fee on YouTube. Given its topic (more on that below) and financial backers (the pro-FC organization CommunicationFirst and several other pro-FC organizations and individuals), I felt I had to see it.

This is Not About Me aspires to send a broad message on behalf of all non-speakers. Teachers and therapists need to recognize that disruptive and aggressive behaviors are often the result of emotional distress and frustration--including the frustration of not having adequate means to communicate one’s wants, needs, and emotional distress. Instead of suppressing such behaviors through restraint, or corralling and punishing them through seclusion, teachers and therapists should view them as cries for help. Everyone who works with the child must figure out what the child is communicating, make changes to address the child’s needs and distress and, so that the child can express those needs more clearly going forward, help the child access the tools she needs to fully express herself. These tools may also reveal that the child is much more capable than teachers and therapists have assumed: capable, perhaps, of more than just life skills classes, simple object labeling, repetitive directions-following; capable, perhaps, of accessing the general education curriculum.

These messages are eminently wise, reasonable, and ethical. They’re also messages that properly trained teachers and therapists have been exposed to for decades—and that decent, self-controlled teachers and therapists routinely act upon (Heward and Orlansky, 1988).

What’s new, as recounted in This is Not About Me, are two completely different items. Item one is the challenges of its subject and the horrendous treatments she experienced at the hands of teachers and therapists who either were somehow ignorant of, or willfully ignored, the above messages. Item two is a set of curious omissions and suggestions which, taken together, might appear to lend some credibility to facilitated communication—at least in the eyes of those who are already prone to believe in one or more variants of it (FC, Rapid Prompting Method/RPM, and/or Spelling to Communicate/S2C).

In other words, This is Not About Me is more about its subject and her peculiar circumstances than about most other special education students and their experiences, and its messages—those, that is, that aren’t already part of the common, longstanding wisdom and professional ethics in the world of special education professionals—have more to do with the plausibility of FC/RPM/S2C as valid communication methods than with how schools should treat special education students.

The subject of the documentary, a now 29-year-old woman by the name of Jordyn Zimmerman, is repeatedly described as non-speaking, including on the This is Not About Me website. Zimmerman’s own website states that “After being diagnosed as autistic at a young age, she did not receive access to augmentative communication until the age of 18.” Zimmerman is Board Chair of the pro-FC organization CommunicationFIRST and serves on The United States President's Committee for People with Intellectual Disabilities. In addition, she is an Apple Distinguished Fellow and a guest blogger at AssistiveWare (AssistiveWare being another of This is Not About Me’s financial backers, and the creator of the software that Zimmerman uses on her Apple iPad as her augmentative communication tool). According to Zimmerman’s website, she is now pursuing an MBA at the online school Quantic School of Business and Technology.

This is Not About Me is bookended by two statements about how unusual Zimmerman is. One of its first sound bites is “She was probably one of the most challenging children I’ve ever worked with.” The speaker, autism program director Wendy Bergant, describes Zimmerman’s extreme reactions to unexpected change and how she would hurt herself in “ways that were very uncommon to see even in my field.” One of the last sound bites, from attorney Virginia Wilson, is “I think she is unusual but I think the things she’s done all kids that are nonverbal can benefit from.”

Even those who aren’t particularly familiar with autism spectrum disorders know that challenging behaviors are common in autism. For those who are familiar with autism, what should appear especially unusual about Zimmerman is her linguistic profile, as portrayed by This is Not About Me. While we never hear Zimmerman speak, we do see her type on her AssistiveWare-enabled iPad. And while many non-to-minimal speakers with autism can type basic words and routine phrases independently, Zimmerman can type sophisticated words and novel sentences: sentences like “I have a challenge for all of you,” “Tell students to go after their dreams,” and “Do you accept my challenge?” Furthermore, while nearly all FCed individuals appear to type sophisticated words and novel sentences, but only when a “communication and regulations partner” (CRP) hovers within auditory, visual, and tactile cueing range and stares at the letterboard or keyboard, Zimmerman’s typing is clearly independent. Not only is there no CRP hovering over her; she types much faster than FCed individuals and uses both hands—which makes letter cueing much more difficult than it is in the case of the single, wandering index finger that typifies facilitated typing.

But I’m guessing that most people won’t fully appreciate the significance of these differences between Zimmerman’s typing and the typing of someone who is subjected to FC—especially if that person’s CRP is merely sitting next to them and not touching them or holding up the letterboard. That’s because I’ve heard two of the autism language experts at last year’s NIDCD Webinar equate Zimmerman’s communication skills with that of an FCed individual who falls into the latter category.

This confusion has detrimental consequences. The more Zimmerman’s clearly independent typing is confused and conflated with too-subtle-for-naïve-eyes FC, the more it appears from Zimmerman’s example that FCed individuals can gain complete communicative independence, and the more legitimate FC appears to be. Unfortunately, This is Not About Me adds to this confusion. Zimmerman’s extreme, often self-injurious behaviors (as described by the autism program director, Zimmerman’s mother, and excerpts of a summary of psychological evaluations), as well as the rocking back and forth or side to side that we observe in many of her scenes, are more common in profound autism (where FC/RPM/S2C is also common) than in mild autism (where FC/RPM/S2C is rare if non-existent). Like many (most?) individuals who are subjected to FC, and unlike nearly everyone else on the autism spectrum, Zimmerman claims to have a brain-body disconnect: the voiceover of her typing tells us that she fights with her body on a daily basis; that her body doesn’t want to follow her brain. As with most (all?) individuals who are subjected to FC, everyone initially assumed she was low functioning and couldn’t communicate until she experienced a breakthrough through typing. Finally, Zimmerman uses a phrase for that breakthrough that matches one of the code phrases used for FC by FC proponents:  “communicating through typing.” All this makes Zimmerman appear to have more in common with FCed individuals than with individuals at the non-FCed end of the autism spectrum.

One of Zimmerman’s most obvious points of commonality with non-speakers, of course, is that we never hear her speak. But is she actually non-speaking or, at the very least, as minimally speaking as those who are subjected to FC? This is Not About Me is oddly evasive. Its excerpts of the psychological summaries mentioned above omit all references to Zimmerman’s language abilities, even though all autism evaluations include language evaluations. One excerpt mentions a full-scale IQ “in the mentally retarded” range but cuts off before the score is disaggregated (as it nearly always is, especially in autism evaluations) into verbal and performance IQ sub-scores. In a documentary about communication problems, these are egregious omissions. Nor do the talking heads supply us with any more information: the closest anyone comes to suggesting that Zimmerman has minimal speech is to note that she sometimes produces “unintelligible noises.” But unintelligible noises do not rule out speech.

The only person to share anything about Zimmerman’s speaking skills is Zimmerman herself. This happens in an excerpt of Zimmerman’s presentation at a Board of Education meeting nine years ago, where we hear her voiceover say:

I can talk. But when I speak with my mouth, first I have to think of the word and if I even know what that word means. Then I have to figure out how to pronounce the word so everyone can understand me. Next I have to modulate my voice to the appropriate volume and tone so that it isn’t too loud or too quiet. It is very frustrating.

It’s not clear from this voiceover, however, whether Zimmerman can speak in full sentences with sophisticated vocabulary, or only in single, basic words.

However, if you go back to the original source, you’ll see that the above excerpt has omitted a number of phrases that would have suggested a much more complex communication profile. These omissions include mid-sentence cuts that were, suspiciously, so smoothly edited out of This is Not About Me that viewers would have no idea that anything was missing. Here is a transcript of the original source with the omitted material in boldface:

I can talk. I can even have a conversation with you. But I find speaking very difficult, especially when I’m upset or overstimulated. So for over a year now, I’ve been using an app on my iPad a lot of the time. When I speak with my mouth it isn’t just my voice box and my mouth. First I have to think of the word and if I even know what that word means. Then I have to figure out how to pronounce the word so everyone can understand me. Next I have to modulate my voice to the appropriate volume and tone so that it isn’t too loud or too quiet. Even though this is very difficult for me it is probably the easiest step. Lastly, I’ve got to talk and make sentences. I’m sure you’ve got to do all of these things too. Because my brain moves much faster than my mouth I have to constantly fight myself to do them. It is very frustrating. I also miss a lot of what I want to say and sometimes I say different things than what I mean or want to say.

As this longer excerpt makes clear, Zimmerman’s spoken skills extend well beyond those of most FCed individuals. For all the struggle and extra time it takes her, she can “make sentences” and “have a conversation with you.” Except for the remark about the brain-body disconnect (“sometimes say[ing] things different things than what I mean or want to say”), this longer excerpt is problematic for any pro-FC agenda This is Not About Me might possibly have.

It also strains psycholinguistic plausibility. Many of the above challenges—e.g., those of finding words and making sentences—apply to typing as well as to speech. The challenge of “my brain mov[ing] much faster than my mouth” should actually be more of a problem for typing: typing is generally a much slower process than speech, even in the case of people who have difficulty pronouncing words, and even in the case of Zimmerman’s relatively rapid typing. Why Zimmerman prefers typing over speaking remains largely unexplained.

Also straining credibility is the idea that none of Zimmerman’s teachers, therapists, or care providers appeared to have been aware of, or to have taken advantage of Zimmerman’s literacy skills. We learn that she is able to write words and that her typing skills emerged the moment she was handed an iPad. But, with pens and paper and keyboards ubiquitous in homes and classrooms, how did everyone go so many years without noticing Zimmerman’s ability to express herself in writing?

The only apparent explanation is that it was part and parcel of the mix of extreme incompetence and abdication of responsibility that led to Zimmerman’s scandalous treatment by school administrators, teachers, paraprofessionals, and clinicians throughout most of her school years, some of the more egregious examples of which include:

• Being placed in a class where they played video games all day long

• Later, being placed in a closet. Zimmerman’s mother reports that “They cleared out a closet in the high school. And that’s where my daughter stayed.”

• Being forced to use an extremely limited PECS book (Picture Exchange Communication System) that only allowed her to form sentences that began with “I want,” “I see,” “I have,” “I smell,” “I hear,” and “It is,” and that had “cookie” as the only food option.

The PECS experience, in particular, was so frustrating to Zimmerman that she felt motivated to advocate for others who are subjected to PECS so that they, too, can get “the devices they need to express themselves instead of being forced to say what professionals want them to say.” Oddly, later on in the documentary we see Zimmerman volunteering in a classroom at CARES (Cardinal Autism Resource and Education School)—the one school Zimmerman attended where people tried to understand her, and where she had her iPad-based communication breakthrough—and here we see PECS books  everywhere, as well as other legitimate AAC (augmentative and alternative communication) tools. Despite this, the film fails to clarify that there is nothing inherently limiting in terms of linguistic expression about PECS books: they are customized to contain whatever vocabulary and sentence structures the teachers think the child is ready for, and can even allow open-ended, word-by-word communication.

The same is true of other AAC tools: all high-tech voice-output devices have keyboards. But to dwell on this point would undermine the FC-friendly notion that open-ended communication is only possible with regular keyboards, iPads, and letterboards, especially when they are held up and/or hovered over by CRPs.

As for Zimmerman, the actual limitations on her ability to communicate, as this film makes clear, stemmed from the scandalously inept and unethical professionals that populated the educational settings to which she was subjected.

Which brings us to the This is Not About Me’s most compelling message: namely, for all the ethical guidelines that teachers, speech-language pathologists, other autism experts, and school administrators are supposed to follow, there are still some cases where professionals fail, for one reason or another, to adhere to those guidelines. When this happens, the rights—including the communication rights—of some of our most vulnerable citizens are egregiously violated.

The persistence of such violations, indeed, is one of the chief reasons for this website—and for this and many other blog posts.

REFERENCES:

Heward, W. & Orlansky, M. (1988). Exceptional Children, Third Edition. Merrill Publishing Company: Columbus, Ohio.

Just out: journalist Zaid Jilani's piece on autism pseudo-science!

Check out this fantastic new piece by Zaid Jilani investigating the latest variants of autism FC pseudoscience. Zaid Jilani, to my knowledge, is the first major/mainstream journalist to have the courage to take this on. I'm happy to have been interviewed. 

One of many powerful quotes from Zilani: "It would be hard to find another topic where so much of the major media has so uncritically promoted a pseudoscientific method." 

So true.

And open letter to practitioners of speech therapy based on "Natural Language Processing"/"Gestalt Language Processing" principles

Suppose I told you that I’ve been working for decades with a different population of language learners: people I’ve identified as "musical language processors." These are kids who pick out tunes on xylophones and chord progressions on pianos before they utter their first words; they learn their first words not from regular spoken language, but from song lyrics. That is, the words they initially tune in to and produce are sung, not spoken. And suppose I also told you that years of clinical experience have absolutely convinced me that the way to boost these kids’ language skills is to start by only singing words; never speaking them, and that speaking words is counter-productive and should be avoided in the initial stages.

Suppose I also cited for you the existence of adult, self-identified musical language processors who could tell you about how they learned songs before they learned speech, how their first language was song, and how, even though now they can speak fluently, they still translate spoken language into song? Suppose I told you that I know for sure that I myself am one of these musical language processors.

Based on all this, should you believe in the existence of musical language processors? And should you believe that I’ve come up with the most effective way to help musical language processors learn language?

No, you should not.

The field of psychology has taught us that first-person experiences, eye-witness experience, self-reports, and memories, including from childhood, are all unreliable. Practitioners, no matter how experienced we think we are, no matter how accurate we think our intuitions are, are easily deceived by first-person experience. Consider the litany of interventions, including in autism, that practitioners were convinced were successful but that turned out, under rigorous scientific scrutiny, to be, at best, ineffective, and at worst, harmful (especially when we include wasted resources and opportunity costs): facilitated communication, auditory integration therapy, sensory integration—to name just a few. To those who practiced them, they felt right, made sense, and looked effective. But rigorous, randomized controlled experiments told us otherwise.

In general, only rigorous, randomized controlled experiments can tell us whether our observations, intuitions, memories, and introspections are accurate. And, as far as I’m concerned, it is in that arena—the well-controlled empirical arena, the arena in which “empirical data” actually exists—where “back and forth conversations in which people share perspectives and assessments of empirical data” are worth having.

If you want to explore the accuracy of your intuitions about gestalt language processing, here’s what you could do (or, more ideally, invite an objective researcher to do):

1. Recruit a large number of children who meet your proposed criteria for being stage 1 gestalt language processors—presumably: autism diagnosis plus only producing echolalia.

2. Measure baseline language skills via the CASL, CELF, or some other comprehensive, standardized language measure.

3. Randomly divide the participants into two subgroups of equal size, a treatment group and a control group, matched on CASL or CELF scores, age, level of diagnosed autism, and amount and nature of previous SLP services.

3. Over an extended, pre-specified period of time, the treatment group receives a pre-specified schedule and quantity of NLA/GLP-based therapy from SLPs trained in NLA/GLP-based therapy.

4. Over an equivalent period of time, on an identical schedule, the control gets an equal quantity of standard SLP therapy from SLPs who aren’t trained in NLA/GLP-based therapy and who follow traditional SLP-based protocols.

5. At the conclusion of this time period, treatment groups and control groups are reassessed via the CASL or CELF, and the results are compared.

Have you ever considered doing such a study?

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A linguist's take on Gestalt Language Processing

 Just out today:

A Linguist’s Take on Blanc’s Proposition of Gestalt Language Processing and Natural Language Acquisition: An Implausible Theory at Odds with the Research (springer.com)

Autism pseudoscience update

It's been a busy month for me in the world of autism pseudoscience. I've got one recent publication relating to one variety of autism pseudoscience and one upcoming publication on another.

(As has been observed many times over, autism is a huge magnet for pseudoscience).

My published article relates to a study that purports to find hidden literacy skills in individuals who use a variety of FC known as Spelling to Communicate (S2C). (I blogged about this study earlier, but the article is a more formal critique). Spelling to Communicate derives from an earlier form of FC known as Rapid Prompting Method (RPM); thanks to a best-selling S2C miracle memoir by anti-vaxxer and RFK Jr. associate J.B. Handley's , S2C has overtaken RPM. But now, thanks to a documentary inspired by J.B. Handley's memoir, Spellers, and its starring practitioner, Dawnmarie Gaivin (who has subsequently been featured both in Forbes and in the San Diego Tribune), S2C is looking like it will soon be overtaken by a new (but seemingly identical) brand known as the Spellers Method. There is no honor among thieves.

Meanwhile, there's a separate autism pseudoscience, the subject of my forthcoming article, that takes its inspiration from an educational pseudoscience--learning styles theory. Proponents of this take on autism, known sometimes as Natural Language Processing and sometimes as Gestalt Language Processing, propose that first language learners have one of two different learning styles: analytical  (which supposedly characterizes most non-autistic language learners) and gestalt (which supposedly characterizes most autistic language learners). These proponents are having a field day selling to both speech-language pathologists and parents the seemingly exciting and hope-filled notion that autistic children are "gestalt language processors." This, despite the absence of any evidence for such a hypothesis, and despite all the research finding that autistic individuals are better at details than at big pictures. 

Stay tuned for more on this in a later post.

Unreliable speech? “So they tell me, and they certainly speak truth, for my Lady says the same”

Cross-posted at FacilitatedCommunication.org.

The Uniquely Human podcasts I blogged about below have reminded me of one of my favorite sections from C.S. Lewis’s Narnia series. This section, from the Silver Chair, features Prince Rilian, a resident of the Underworld, explaining to his visitors how his entire life as he knows it is thanks to the good graces of an “all but heavenly Queen”:

I know nothing of who I was and whence I came into this Dark World. I remember no time when I was not dwelling, as now, at the court of this all but heavenly Queen; but my thought is that she saved me from some evil enchantment and brought me hither of her exceeding bounty…

Rilian remains utterly dependent on this Queen because of a spell that controls his body:

[E]ven now I am bound by a spell, from which my Lady alone can free me.  Every night there comes an hour when my mind is most horribly changed and, after my mind, my body…. [Or] So they tell me, and they certainly speak truth, for my Lady says the same.

But the Queen promises Rilian that eventually he will gain independence:

Now the queen’s majesty knows by her art that I shall be freed from this enchantment once she has made me king of a land in the Overworld and sets a crown upon my head.

For now, however, night approaches and, as protection against the control inflicted every night over his body by the enchantment:

They will come in presently and bind me hand and foot to yonder chair. Alas, so it must be: for in my fury, they tell me, I would destroy all that I could reach.

Tonight, unfortunately, the Queen is away, but:

By custom, none but the Queen herself remains with me in my evil hour. Such is her tender care for my honor that she would not willingly suffer any ears but her own to hear the words I utter in that frenzy.

I can no longer read this passage without thinking of the victims of facilitated communication, particularly Spelling to Communicate (S2C) and Rapid Prompting Method (RPM). These growing numbers of vulnerable individuals, granted little control over their lives, are often boxed into chairs in corners, where they type out messages controlled by their facilitators. Some messages are worshipful, praising both the facilitators and the “inventors” of R2C/RPM. Other messages are dismissive, explaining why their own actual (spoken or independently typed) words and body language cannot be trusted. Others are hopeful, alluding to the promise of eventual freedom from facilitator control. The promise, perhaps, of being able and allowed to type without their facilitators hovering within tactile, visual, and/or auditory cueing range? If so, a promise that, according to all the available evidence, remains elusive.

Nor can I read what happens next in The Silver Chair without thinking of the urgent need for observers to figure out which words to believe. Do we believe these words, which occur before the purported enchantment begins?

While the fit is upon me, it well may well be that I shall beg and implore you, with entreaties and threatenings, to loosen my bonds. They say I do… But do not listen to me. Harden your hearts and stop your ears…

Or do we believe these words, which occur after the purported enchantment is in full swing:

Oh, have mercy. Let me out, let me go back… Quick! I am sane now. Every night I am sane. If I could get out of this enchanted chair, it would last.

Which of Rilian’s words are his own, and which are controlled by enchantment? Is the Queen really a savior… or might she be an opportunistic witch? For those who want to re(visit) the rest of the scene, I won’t spoil the magic of uncertainty.

But, out in the real world, the question of which of a person’s apparent or purported messages to believe also arises, especially in FC—indeed, it arises repeatedly. It arises, for example, in one of the interviews with S2C “inventor” Elizabeth Vosseller on the Uniquely Human podcast that I wrote about earlier. In this audio-only interview, we hear Vosseller discussing how one of her clients sometimes says “home” when actually “he’s perfectly happy” and doesn’t want to go home. This client is present at the interview, and we hear him say “January,” and, repeatedly, “And then we’ll go.” Following these utterances we hear Vosseller say “That’s my unreliable mouth” and “speech overflow,” as she apparently reads out what her client purportedly typed by way of dismissive commentary about his spoken words. We also hear Vosseller say, again purportedly quoting her client’s facilitated typing, “It is really frustrating when I blurt out something that I don’t mean or want.”

The question of what to believe also arises in the infamous “No More! No More!” scene from the pro-FC documentary The Reason I Jump. Here the S2C victim repeatedly calls out “No more! No More!”, seemingly in reference to being prompted by her facilitating mother to type an entirely different message on the letterboard: namely, the message that she and the person she purportedly has a romantic interest in could, thanks to S2C, “finally tell each other how we felt.”

Indeed, an entire article is devoted to the question of which messages to believe when some are facilitated and some are not: a 2009 article by FC proponents Kasa-Hendrickson, Broderick, and Hanson entitled “Sorting our speech: Understanding multiple methods of communication for persons with autism and other developmental disabilities.” The authors open with the following scene, featuring a long-time victim of facilitated communication:

Go home!” Sue shouted. I had just arrived at her home and this apparent command to leave confused me. Did she want me to leave? Did she want to go? I decided to move forward with the conversation saying, “Good to see you Sue. How is school going?” Sue reached for her mother’s arm and tapped it quickly. Sue’s mother pulled out a small electronic keyboard and held it in front of Sue. Sue pointed her finger and, punching one letter at a time, typed out, “Echolalia at its worst. It is very embarrassing. I want you to stay.

So which messages do we believe: the spoken or the facilitated?

For FC proponents, the answer is clear. Whenever there’s a conflict between spoken and facilitated communication, we should go with the latter. The speech of people who are subjected to FC (which includes not just those with autism, but also those with other impairments that affect speech,  like Down Syndrome) is purportedly unreliable—whether because of “speech overflow,” “dysregulation,” “automatic echolalia,” “apraxia,” “dyspraxia”, or some combination thereof. When challenged about the absence of evidence for these unreliable-speech-making conditions as justifications for FC, proponents add that the facilitated individuals tell us that their speech can’t be trusted—just like Prince Rilian from The Silver Chair.

As Kasa-Hendrickson et al. report, for example:

Each of the participants [in their study] had the ability to produce some spoken language prior to their being introduced to FC, yet none would describe their speech as communicative.

In particular, Kasa-Hendrickson et al.  cite the following from their participants:

• Attributed to Frank: “I am almost never able to say what I want through talking. but I have to keep going with the typing to really be able to say what I want.”

• Attributed to Lucy: “I am feeling an urge to say the word when I see it. The urge is because I am different when I type. I have more confidence.”

• Attributed to Jamie: “In class today I was anxious and I was typing out an English assignment and I kept saying, “Mickey turns into Frankenstein.” But I was not typing that. I was typing about Edgar Allan Poe, but all of a sudden out leapt, “Mickey turns into Frankenstein.” I call these words of annoyance.

That is, like so many other FC-proponents, Kasa-Hendrickson et al. are certain that the typed messages are the reliable ones because, after all, that’s what the messages themselves tell us. Just like the messages produced by Prince Rilian—before he was strapped into his silver chair.

Based on this, Kasa-Hendrickson et al. go on to suggest, not only should we distrust speech that conflicts with FC, but we should also avoid any engagement with such speech because we don’t want to encourage it. Speech that doesn’t conflict with FC, on the other hand, can be encouraged and even “scaffolded.” Scaffolding includes noncontroversial tools like “routine social scripts” and “supported conversation”; for Kasa-Hendrickson et al., it also includes FC. That is, scaffolding is also afoot in cases of facilitated typing in which the FCed individuals say the letters while or after they type them or read an entire message once it’s been typed out. As evidence of how helpful this is, Kasa-Hendrickson et al. once again cite FCed messages:

• Attributed to Lucy: “I really think that seeing the words when I typed them made it easy to say the words and I feel that the typed words are more important that I should try to say them so I am heard.””

• In reference to Nathan: “Nathan Guzman types independently, and speaks each word as he types it out on his keyboard. Nathan comments on the difficulty of speaking aloud, and on the supportive nature of reading his own typing out loud.”

We should note here that Kasa-Hendrickson et al. use the word “independent” in the specialized sense favored by FC promoters and practitioners: for them, “independent” only means independent of a facilitator’s continuous physical contact, not independent of the facilitator’s physical proximity. Because it doesn’t rule out auditory and visual cueing, “independent” in this sense does not entail actual communicative independence.

So how do we decide which messages to believe when speech and facilitated communication conflict? FC believers, of course, say we should believe the FC: after all, that’s what the FCed messages tell us we should do.

But the rest of us shouldn’t get bound up in this circular enchantment. Instead, we should see all this for what it actually is, namely, a choice between:

1. Something that is highly immune to cuing by a nearby facilitator (speech)

2. Something that is highly susceptible to it (index finger typing)

No matter how insistently the index-finger-plus-hovering-facilitator messages seem, as C.S. Lewis might put it, to “beg and implore us, with entreaties and threatenings, not to listen to the speech and to harden our hearts and stop our ears,” common sense and basic decency tell us to do the exact opposite.

….Unless and until a reliable, enchantment-free, message-passing experiment tells us otherwise.

REFERENCES:

Kasa-Hendrickson, C., Broderick, A., & Hanson, D. (2009). Sorting our speech: Understanding multiple methods of communication for persons with autism and other developmental disabilities, Journal of Developmental Processes, 4(2), 116-133.

Lewis, C.S. (1953). The Silver Chair. Geoffrey Bles.