Monday, October 21, 2024

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.

Tuesday, October 15, 2024

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?

x

Sunday, September 15, 2024

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.

Tuesday, August 27, 2024

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.

Thursday, August 8, 2024

New takes on apraxia, miracles, presuming competence et al. from S2C proponents

The perusal of Prizant’s website that inspired my last post also led me to his Uniquely Human Podcast. As I mentioned, at least four of the podcast’s episodes platform non-speakers who type out messages using a variant of facilitated communication known as Spelling to Communicate, or S2C. I had initially listened to these episodes in order to explore Prizant’s 180-degree shift on matters relating to echolalia—a shift from a stance that was problematic for FC to one that supports it. But as I listened, I discovered that there were also some additional pro-FC stances that Prizant and others air that are worth going over. These include:

  1. The purported prevalence of “unreliable speech” among minimal speakers

  2. A conflation of “unreliable speech” with speech apraxia

  3. The notion of that there’s new research that supports S2C

  4. The notion that S2C proponents are not claiming that S2C is a miracle treatment

  5. A confusion of letter selection with word selection

  6. A slippery notion about the role of the communication and regulations partner (CRP)

  7. The notion that S2C protocols safeguard against facilitator influence

  8. The claim that non-speakers are routinely being denied access to “robust AAC”

  9. A slippery notion of what it means to presume competence

But first I think a few observations are in order about some of the people involved in these podcasts--especially given how UniquelyHuman.com purports to embrace neurodiversity.

First, let’s consider Prizant’s co-host, David Finch, who introduces himself at the beginning of the show as, among other things, “being on the spectrum.” In one episode, he characterizes himself as a “fellow autistic” of one of the podcast’s non-speaking, S2Ced individuals. Finch was diagnosed as an adult by his wife, a speech-language pathologist, with Asperger’s Syndrome. (Autism Spectrum Disorder, which has absorbed Asperger’s Syndrome, is typically diagnosed by child psychologists, child psychiatrists, or pediatric neurologists).

Since receiving that now-obsolete diagnosis as an adult from his spouse, Finch has had numerous speaking gigs. On his website, he describes himself as a “writer, autism consultant, keynote speaker, and New York Times best-selling author on neurodiversity and relationships.” You can see him in action—socially dynamic and smooth-talking—here and here.  At one point on the Uniquely Human Podcast, Dave states that his speech includes a lot of “false starts” and that, before editing the Uniquely Human podcast, he discovered that there were occasionally 10-minute pauses between some of his spoken words. None of this is evident the videos I linked to above.

Also worth mentioning are a few of the show’s guests. One is Jordyn Zimmermen, someone who types fluently and independently on an iPad, with no one hovering nearby within auditory or visual cueing range. Videos show her typing with both hands and multiple fingers, unlike those subjected to S2C, who are prompted to type with a single, extended index finger. Videos also show Zimmerman communicating that “I can speak. I can even have a conversation with you.” But in the Uniquely Human Podcast, she is introduced as a non-speaking individual, and her ability to speak is not mentioned once.

Another guest is Tauna Szymansky. She is introduced on the Uniquely Human Podcast just as she is described on the pro-FC webiste CommunicationFirst, where she is the Executive Director and Legal Director: as “neurodivergent and multiply disabled, and expresses herself most effectively by typing, though is usually able to communicate using speech.”  Prizant adds that she has a “progressive disability.” The nature of Szymansky’s neurodivergence or of the implied impediment to spoken language is never disclosed; on the podcast, her speech is as fluent and articulate as Dave’s.

Also undisclosed are Szymansky’s two personal, vested interests in autism and S2C: the fact that FC-promoter Vikram Jaswal is her husband and the fact that her daughter is an autistic S2C-user. Prizant does, however, hint at Szymansky’s spousal connection by mentioning that he and his wife have socialized with Szymanski and her husband, whom he simply calls “Vikram.”

Other participants on the show include four non-speaking, S2Ced individuals: Ian Nordling (episodes 16 and 101), Danny Whitty (episode 35), and Elizabeth Bonker (episode 86). According to all the available evidence, their words are facilitated out of them, and likely authored, by their non-autistic facilitators.

It’s worth noting that, between (1) the above S2Ced non-speakers, (2) a co-host diagnosed with Asperger’s by his wife when he was an adult, and (3) guests like Temple Grandin, whose high functioning autism diagnosis has never been in doubt, the Uniquely Human Podcast, for all its purported celebration of neurodiversity, appears never to have invited anyone in the vast middle of the spectrum: i.e., someone with moderate autism.

Now let’s turn to non-speakers in particular, and to the nine items I mentioned above.

1. The purported prevalence of “unreliable speech” among minimal speakers

Prizant’s main source on this question is Elizabeth Vosseller, the person credited with “inventing” S2C. Vosseller defines “unreliable” as “my words don’t always mean what I say.” Sometimes, she explains, someone’s words can mean the “exact opposite.” Her example comes from one of her longest-term clients, Ian, who sometimes says “home” when actually he’s perfectly happy” and doesn’t want to go home.

How do we determine when speech is reliable? Vosseller doesn’t spell this out, but the answer, in effect, involves spelling. As her discussion, and her facilitation of Ian, make clear, whenever there’s a conflict between speech and spelling, the latter takes precedence. Here is Ian, facilitated by Vosseller:

It is really frustrating when I blurt out something that I don’t mean or want.

Later in the podcast, Ian calls out something that sounds like “January,” and then types “That’s my unreliable mouth.” All three speakers—Dave, Prizant, and Vosseller—then marvel at Ian’s “incredible self-awareness.”

In an earlier episode, when Ian starts repeating something that sounds like “I want go” or “And then we’ll go,” Vosseller responds with “And then you’ll go after you’re done,” and Ian eventually types another apparent explanation for his “unreliable” speech: “Speech overflow.”

Vosseller compares this to the erroneous reflexes that all of us have: for example, when we say “Thanks, you too” back at someone who tells us “Happy birthday.” She also alludes vaguely to testimonials of “high functioning” people who start having trouble with speech when they get “dysregulated.” Indeed, probably all of us can relate to being so angry or freaked out that it’s hard to get the words out coherently, though I doubt even the angriest or most freaked out person says “I want to go home” when they instead want to stay.

Vosseller also suggests that “unreliable speech” includes:

  • statements that people accidentally say out loud that are true, but that they don’t actually want to share with others

  • speech that is consistent with what the person types, but comes out at a more linguistically primitive level

As Ian, facilitated by Vosseller, puts it, “Sometimes what comes out of my mouth even when it is reliable sounds young and immature.”

Ian adds: “What I spell slowly is what I can communicate when I can get my brain and body working together,” whereupon Prizant alludes to others “like Ian” who say the same thing.

What about those FCed individuals who are able to read the letters they select as they point to them, and/or the words or sentences that they’ve purported spelled out, after they’ve purportedly spelled them out? We see this with Danny, who appears in episode 35, and who can say things like “Thank you! Thank you so much!” “I’m 36 years old” “Oh my god” and “traumatizing”—after he’s typed them out. Presumably that speech is reliable since it comports with what was typed. But then why does Danny need to type first? Of course, the answer that no S2C proponent wants to voice is this one:

It’s a lot easier for facilitators to control typing than to control speech, and many individuals with autism are able to sound out printed messages even if they don’t have the comprehension skills to understand them.

Unreliability, per Vosseller, can also include movements. Vosseller recounts how someone diagnosed Ian as being “light-sensitive” and in need of special glasses. One might have concluded, from the fact that Ian initially kept tearing off those glasses and even breaking them, that he didn’t want to wear them. But, Voseller explains, although he “needed the glasses and wanted the glasses,” he had to overcome the sensory-motor experience of wearing the glasses and reflexively taking them off.

As Vosseller sums things up, “Insides don’t match the outsides.” And indeed, this purported mismatch between intention and behavior—between brain and body—is the central tenet of S2C doctrine: so central that the absence of any evidence for such a condition in minimally-speaking autism is, for proponents, not even worth contemplating.

2.  A conflation of “unreliable speech” with apraxia

As I discussed in my earlier post, Prizant characterizes some instances of unreliable speech as “automatic echolalia.” Most of Vosseller’s commentary, however, suggests that she views unreliable speech as something completely different. For her, it is speech apraxia. The one paper she cites is Tierny et al. (2015), which finds that up to two-thirds of individuals diagnosed with autism have a secondary diagnosis of speech apraxia. Here is the description of apraxia the authors provide:

Speech errors made by children with apraxia commonly include (1) inconsistent errors on consonants and vowels in repeated productions of syllables or words, (2) lengthened and disrupted coarticulatory transitions between sounds and syllables, and (3) inappropriate prosody. These errors are often inconsistent making their speech particularly challenging to interpret.

In other words, apraxia is about pronouncing intended words incorrectly, not pronouncing unintended words correctly.

Moreover:

Childhood apraxia of speech is unique among the speech sound disorders because of its association with persistent and often substantial language, reading, and spelling disabilities in children.

In other words, if S2Ced individuals have apraxia, that’s yet another reason to be skeptical about the authorship of their highly literate, S2Ced output.

3. The notion that there’s new research that supports S2C

In addition to citing Tierny et al., which contradicts rather than supports her various claims, Vosseler alludes to recent work by Jaswal and Torres: people she’s been “honored to collaborate with” and whose articles we’ve critiqued elsewhere on this blog. She also cites Delafield-Butt as someone looking at the motor signature in autism.

I had never heard of Delefield Butt, so I looked up his one paper on autism and motor function, Trevarthen & Delafield-Butt (2017). As is clear from the abstract, while the authors examine problems in control of movements and in motor sequencing, they also discuss how these problems lead to problems with “affective expression and intersubjective engagement with parents,” followed by “retardation of cognitive development and language learning in the second or third year.” They examine not just “disturbances of posture, locomotion and prospective motor control in children with autism,” but also in disturbances in “their facial expression of interest and affect, and attention to other persons' expressions.”

In other words, Delefield Butt’s work is not FC-friendly. Instead of redefining autism as a motor disorder rather than as a socio-cognitive disorder with a resultant language delay, as FC proponents have been doing since the 1990s, Delefield Butt’s recent work points to motor problems as the causes of the socio-cognitive and linguistic challenges of autism that, in turn, call into question the authorship of S2Ced messages.

4. The notion that S2C proponents are not claiming that S2C is a miracle treatment

Prizant and Vosseller, apparently, are tired of we critics taking FC-promoters to task for claiming FC as a miracle treatment for autism. To try to lay this “misconception” to rest, Vosseller cites the enormous amount of work that Ian and other clients have had to put in over the years to become fluent spellers. Here is Ian, facilitated by Vosseller:

OMG there is no miracle for me! I had to work my butt off for where I am here today. I work day and night to control lots of unwanted motor that some call behavior.

But what, exactly, has Ian—facilitated by Vosseller—worked his butt off on? Vocabulary and syntax? Phonics and spelling? No. As Vosseller makes clear, what Ian is working his butt off on is the motor skill of pointing to letters on the letter board so he can “flow from letter to letter”—a motor challenge she compares to learning to dance. And while she also cites learning phonics as a comparison, she makes it clear that phonics and other language and literacy skills are not what she teaches. In other words, Ian’s language and literacy skills are already there; all Vosseller has had to do is unlock them by “teaching the motor.”

That is the actual purported miracle that raises red flags among those who haven’t drunk the Kool-Aid: the miracle of non-speakers with minimal apparent receptive language and minimal exposure to literacy instruction already knowing how to type out sentences with sophisticated vocabulary and syntax.

5. A confusion of letter selection with word selection

Another red flag about S2C and other forms of facilitated communication is the slow, laborious process of hunt and peck, index finger typing. In a couple of the Uniquely Human episodes, the suggestion emerges that hesitating over letters results from the words—as opposed to the letters—coming slowly, or from hesitations between specific word choices. But this only explains the hesitation over the first letter or two of a word; once one is a couple of letters into a word, one has chosen one’s word, and at that point the typing should speed up (assuming one’s literacy skills include the ability to spell that word).

Why many S2Ced individuals continue to hover over letter selections within words after years of letterboard typing remains unacknowledged and unaddressed.

6. A slippery notion about the role of the facilitator

S2C proponents have renamed the facilitator a “communication and regulations partner,” or CRP. This term potentially contains a multitude of roles, and, indeed, across the podcasts, Vosseller has endowed the CRP with a variety of somewhat incompatible, boundaries-crossing roles.

  1. A therapist or trusted friend: a trusted partner who helps her client stay “regulated”. As both Prizant and Vosseller put it, “It’s all about relationships.” Vosseller adds that autistic people are actually really into relationships, “hyper-sensitive” about how people relate to them and, especially non-speakers, “especially good b.s. detectors.” A trusting relationship with the CRP is therefore especially important. This, in turn, is supposed to explain the highly variable typing fluency of a single S2Ced individual with different facilitators. Danny, for example, supposedly “became fluent” in April, 2020, with one particular person. “Now I am fluent with 3 people” and “almost fluent with another two.”

  2. A translator: presumably of text into speech. While this might appear quite different from a therapist/trusted friend, Vosseller and Prizant, comparing CRPs to ASL interpreters, note that deaf people often have preferred interpreters. But interpreter preferences are governed by the interpreter’s overall skill and by how familiar the interpreter is with a person’s speaking patterns; not by other aspects of their interpersonal relationship. Text-to-speech translation, moreover, requires only the ability to read words and letters out loud. It’s much easier to translate between spoken and written media in a given language than to translate between different languages, and it’s not clear why interpersonal relationships would make any difference here.

  3. A conversation partner: i.e., someone that you’re communicating with, not someone who is helping you communicate to other people. This role is at odds with the other two roles because, as Prizant eagerly points out, conversation partners often “co-construct meanings.” While he doesn’t elaborate on how this works, co-construction, as I explain in an earlier blog post, involves one conversational participant filling in their partner’s pauses with possible words they may be searching for, proposing clarifications, and/or finishing their sentences. These are all things that Vosseller claims that CRPs are trained not to do as part of S2C’s alleged safeguards against influence (more on that below). Despite this, Prizant, Vosseller, and another guest, Jordyn Zimmerman, all agree that our society puts way too much emphasis on independence, and that “interdependence is what it’s all about.” It doesn’t seem to concern them that, however dependent we all are on each other, and however desirable this interdependence might be, all of us have a right to communicate independently, without other people choosing our words for us.

  4. A Sherpa. Vosseller states that, in her evolution from traditional speech-language therapist to CRP, she has learned that her role is to “walk with” her clients rather than “leading them.” This raises a host of questions. Why is Vosseller the one holding up and whisking away the letterboard? Why is she the one determining the criteria for deciding when someone’s speech is what they mean and when it is the opposite of what they mean? Sherpas don’t do that, or anything analogous.

7. The notion that S2C protocols safeguard against facilitator influence

None of the guests on the Uniquely Human Podcast appear to be able to fathom why some people think that there is facilitator influence in S2C. Dave, in particular, is flabbergasted: “I still can’t believe there’s any pushback, there’s any nay-saying around this form of communication. It’s just absurd to me.”  He is sure that the letterboard is completely still, and that “It’s so apparent to me” that Vosseller is “not influencing in any way.”

Nonetheless, Vosseller professes to be aware of the potential for influence. Accordingly, she states, “we work diligently to be just the receiver of information; we safeguard against influence.” But as she continues, it becomes clear that the only type of influence that she has in mind is in conversational dynamics—specifically, asking leading questions or over-interpreting what the person typed. “Even when we pose a question,” she assures us, instead of asking leading questions like “What was your favorite part of XYZ?” properly trained CRPs ask open-ended questions like “What are your thoughts on XYZ?” Furthermore, she never interprets what someone typed after the fact: that is, she never says “What Ian means is this”.

In other words, Vosseller makes it sound like CRPs are trained not to engage in co-construction of meaning.

Vosseller goes on to contrast the CRP with the SLP (the speech-language therapist) who, as she did with Ian back when she was Ian’s SLP rather than his CRP, decides what the topic should be and what messages to practice. Now Ian can decide and “I just receive it.” And when looking for good CRP candidates, she looks for people who “approach[] communication with wonder and curiosity” instead of the “fixing mindset” [sic] of drawing out what they think is locked inside.

Of course, what’s much more concerning than a facilitator who decides on topics, or finishes sentences, or asks leading questions, or interprets what someone typed after the fact, or who thinks they already know what the person is going to communicate, is someone who completely controls the typing—whether through verbal prompts as the index finger approaches the target letter (“Keep going”; “You’re almost there”), or through letterboard movements, or through other, more subtle gestures and sounds, or through decisions about whether a letter selection has occurred and which letter was selected.

The closest Vosseller comes to discussing safeguards against this sort of influence is to assure us that she waits for three seconds before she says a word out loud during an S2C session in order to make sure the word has really ended “so that I’m not influencing him.” That, for her, is enough. It’s as if she’s completely unaware of the myriad additional ways in which CRPs can control messages.

8. The claim that non-speakers are routinely being denied access to “robust AAC”

For this claim, Jordyn Zimmerman is Exhibit A. Purportedly non-speaking (see above), Zimmerman was purportedly denied access until she was 18 years old to the iPad that finally let her communicate. More generally, Prizant, Zimmerman, and Szymansky, the other guest on this episode (episode 38), all claim that people who need AAC (alternative and augmentative communication) devices are routinely denied access. The culprits, apparently, are SLPs (speech-language pathologists) who routinely “gate-keep” these devices, claiming that a student is “not ready.”

What complicates this discussion, however, is the question of what Prizant, Zimmerman, and Szymansky mean by AAC, particularly when they qualify it as “robust AAC.” That’s because S2C promoters regularly conflate S2C with AAC. While it’s hard to believe that SLPs routinely deny standard AAC devices to students who need them in order to communicate—to the point, or so they claim, of trauma—it isn’t hard to believe, indeed it is to be hoped, that many SLPs routinely deny S2C and other forms of facilitated communication to their clients.

9. A slippery notion of what it means to presume competence

To “presume competence” has long been used by FC-proponents to mean to presume that the facilitated person is intellectually, linguistically, and socially competent. This, FC-proponents (along with their disability rights cronies) claim is what all of us should be doing. FC critics, along with many people in the worlds of special education, beg to differ: we shouldn’t be presuming anything a priori: we start with thorough skills evaluations and proceed from there, meeting people where they are.

Perhaps in response to this, Vosseller, as early as her first appearance on Uniquely Human, has redefined “presume competence.” For her, it means to presume that the given individual “wants to learn and can learn,” not that he or she is necessarily “an extraordinarily gifted genius.” In shifting the definition, she has, of course, straw manned her critics: no one is presuming, a priori, that their clients or students don’t want to learn, let alone can’t learn. But, per Vosseller, most therapists/teachers expect their students/clients to demonstrate that they can learn before they’re willing to help them.

Prizant adds that, years ago, someone who is a “big name in the field of autism and applied behavioral analysis” claimed that “autism is nothing more than resistance to learning.” While this doesn’t sound right, there is a grain of truth here: as a paper that includes the pro-FC researcher Morton Gernsbacher (Dawson, Mottron, & Gernsbacher, 2008) acknowledges, learning in autism is “characterized both by spontaneous—sometimes exceptional—mastering of complex material and an apparent resistance to learning in conventional ways.” As anyone can attest who has attempted to teach actual skills and content to autistic students (as opposed to simply conditioning them to select letters on letterboards in response to cues), the reduced tendency in autism to tune into other people makes it very difficult for autistic individuals to learn in conventional ways from others.

(Of course, per Vosseller, any apparent inattention is “outsides not matching insides,” and “autism is a motor issue… not a compliance issue.”)

Vosseller has made clear, furthermore, that S2C practitioners assume far more than just “can and wants to learn”; they also presume that language and literacy skills are intact. And they act on that assumption, never teaching these skills. They teach only what they, in fact, presume to be deficient: namely, motor skills.

That is, for all their exhortations to “presume competence,” no FC-proponent ever presumes that their clients are competent in intentional motor control!

Beyond presuming intact language and literacy, there’s a second level of presumption here—something that strikes me as akin to that second level of facilitation I discuss in an earlier post—facilitation that goes beyond “mere” message generation to a second level of massive translation. We see this when facilitators and others in the audience offer up hyperbolic reactions to the messages that were just typed out. Here’s one example: a message attributed to Ian followed by the reaction by one the podcast hosts:

“I think people are becoming more aware that non speaking does not mean non thinking.”

“That is brilliant.”

Is this part of presuming competence? To my ears it’s painfully condescending—and highly suggestive of some of the subliminal sentiments of FC proponents.

REFERENCES

Dawson, M., Mottron, L., & Gernsbacher, M. A. (2008). Learning in autism. Learning and memory: A comprehensive reference2, 759-72.

Tierney, C., Mayes, S., Lohs, S. R., Black, A., Gisin, E., & Veglia, M. (2015). How Valid Is the Checklist for Autism Spectrum Disorder When a Child Has Apraxia of Speech?. Journal of developmental and behavioral pediatrics : JDBP36(8), 569–574. https://doi.org/10.1097/DBP.0000000000000189

https://www.washingtonpost.com/local/social-issues/parents-of-autistic-children-are-pushing-schools-to-allow-controversial-communication-techniques/2017/02/28/1bd33da2-ed6a-11e6-9973-c5efb7ccfb0d_story.html

https://www.washingtonpost.com/news/answer-sheet/wp/2016/10/01/parents-why-our-second-grader-is-not-going-back-to-school/

https://as.virginia.edu/science-vs-reality

Wednesday, July 31, 2024

Autism and Abstract Thinking

One of the assumptions commonly made about autistic people is that they tend to be "concrete thinkers."  Since the mild/Asperger's end of the autism spectrum is full of mathematicians, engineers, computer scientists, and linguists, who reason in highly symbolic, abstract ways through highly abstract material, this assumption has always baffled me.

But over the years, I've got some sense of where it comes from.

For many people, abstraction is synonymous with fuzziness, flexibility, and open-endedness. Because autistic people tend to be rigid, ritualistic, precise, pendantic, and/or detail-focused, and because many of them don't do well when faced with open-ended questions or open-ended tasks assigned to them by other people, they do not look like abstract thinkers according to this notion of "abstract." All too often, for example, people forget that the concept of "polygon" is no less abstract than the concept of "love."

In addition, many people, especially in education, conflate logical inferencing with the sorts of inferencing that good readers engage in when making sense of a text.  Many of these texts require the sorts of social inferences and bridging inferences (integration of background knowledge) with which autistic children tend to struggle. These are not the same as inferring the contrapositive or doing a reductio ad absurdum.

People also easily confuse labels with concepts--e.g., the word "triangle" with the concept of triangle. As a result, they assume that a child who doesn't know the label for a given concept also doesn't understand the concept.  Many labels for abstract concepts and logical processes are difficult for autistic children to pick up on their own: they often require explicit vocabulary instruction that other children don't need. Unless and until they receive such instruction, many people will assume that they don't understand the underlying abstractions--e.g., that if he doesn't know the word "because," he doesn't understand causality.

Finally, people tend to conflate concrete vs. figurative language with concrete vs. abstract concepts.  While it's true that individuals with autism tend to interpret language concretely, this entails nothing about their ability to form abstract concepts.  In fact, the tendency by autistic children to interpret language concretely isn't a conceptual difficulty with nonliteral language per se, but the result of a combination of deficits in social reasoning and deficits in vocabulary and idioms. For example, a child who assumes that "stuck" always means physically "stuck" has probably simply never learned the more metaphorical meaning of stuck.  

The remedy for much of this (which I flesh out in detail in Students with Autism) should be obvious: direct, systematic instruction, especially in language and in social knowledge; instruction that makes no a priori assumptions about the child's capacity for abstract reasoning.