The first autism cure memoir of 2021 has just come out: J.B. Handley’s Underestimated: an Autism Miracle. Handley is the author of the 2018 anti-vaccine book How to End the Autism Epidemic and, back in 2005, the co-founder (with his wife) of Generation Rescue, an organization that, besides blaming childhood vaccinations for autism, has promoted scientifically discredited treatments like gluten-free diets, megavitamins, and hyperbaric oxygen therapy.
But Handley’s 2021 miracle cure book isn’t about the gluten-free diet, or the vitamin B-12 doses, or the ten fecal microbial transplants, or the “more than 100 ‘dives’” into hyperbaric oxygen chambers to which Handley has subjected his autistic, non-speaking son Jamison.
What frees 17-year-old Jamison from his autism, rather, is one of the newer versions of facilitated communication: Spelling to Communicate (S2C), “invented” by Virginia-based speech-language pathologist Elizabeth Vosseller. In Vosseller’s S2C, just as in Soma Mukhopadhyay’s Rapid Prompting Method (RPM), a facilitator (or “helper”, or “assistant”, or “communication partner”) holds up a letterboard or keyboard in front of the client (or in later stages, with some clients, simply sits or stands next to them) while the client holds out an index finger and purportedly selects letters and spells out messages.
Handley insists that S2C is not facilitated communication. The absence of direct physical contact in S2C, he claims, rules out facilitators guiding messages. Handley also cites the existence of “spellers” (as S2C users are called) who, he claims, have achieved full independence and have confirmed, by typing, that it really was them typing all along. But Handley’s notion of “full independence” is incomplete. For Handley and other S2C/RPM proponents, “full independence” means merely that the “speller” no longer needs their “helper” to prompt them or to hold up the keyboard. It does not mean that the speller no longer needs their helper to sit or stand next to them, as we invariably see with so-called “independent” spellers; it does not mean that the helper’s eyes are no longer glued to the speller’s extended index finger and to the letters it may or may not be approaching.
In other words, Handley et al appear to have never heard of Clever Hans, the German horse who could “add, subtract, multiply, divide, work with fractions, tell time, keep track of the calendar, differentiate between musical tones, and read, spell, and understand German”, guided, not by physical contact, but by body language cues conveyed by his trainer that were imperceptible to most observers, including, quite possibly, the trainer himself. (What’s come to be called the “Clever Hans Effect” has since been replicated in humans).
Handley never checks in any rigorous way for facilitator influence—e.g. by doing a double-blind or message passing test in which Jamison’s helper is blinded to prompts that are shown only to Jamison. The fact that Jamison has purportedly, on “countless” occasions, told his father things his father didn’t know already is enough for Handley. Handley’s most specific “examples” of this are “the many times Jamie has related to me something about his day at school, things his teacher said, or things they studied” and “moments where Jamie is frustrated, he tells us why, and we get the frustrations resolved.” But Handley doesn’t explain how specific Jamison’s statements were or to what degree Handley fact-checked them. For example, did Jamison say “today we learned more about the Reconstruction Era” (vague), or “today we started learning about the Reconstruction Amendments” (less vague); did Handley already know the general topic being covered; did Handley call up the teacher to ask what specific, new material was covered that day after Jamison supposedly typed a statement about specific, new material?
Since Handley doesn’t elaborate, we’re simply to trust that these “countless”, or “thousands”, of examples allow no explanation other than that Jamison is directing the messages.
In addition, we’re supposed to accept the usual claims about sudden manifestations of literacy, of prior knowledge, and of prior academic skills. From the moment Jamison starts S2C, his spelling is perfect. He types out “popcorn”, “movies”, and “cracker jacks”—even though, “because of Jamie’s diet, the kid has never seen a box of Cracker Jacks in his life.” He already knows—because he types it out—that “herbivore” is the “opposite of carnivore”. And, though Handley tells us that Jamison has shown no prior signs of being able to do math, it turns out he already knows basic arithmetic so well that he is able to quickly progress through algebra to calculus. (His letterboard “helper” for calculus also happens to be his calculus tutor). Jamison also already knows Spanish. As Handley explains in an interview with “Dr. Jack” (the prominent anti-vaxxer James Lyons-Weiler, PhD, who has most recently spoken out against the Covid vaccine), “Jamie’s Spanish is very good because his brother and sister took it in school and they would drill in front of him.”
How exactly does S2C unlock these skills? In his description of S2C’s pedagogy, Handley leaves many questions unanswered. S2C starts, he says, with “lessons” followed by answers to “known” questions from the lesson. “It doesn’t really matter”, he tells us, what the lesson is about: “The point is to build a connection between the child’s cognition and… their ability to move their arms and point to letters.” S2C also starts with three letterboards with eight letters each, and the reason S2C begins with “known” questions, Handley explains, is so that the helper knows which one of the letterboards to pick up when. Using himself as an example, Handley notes that inexperienced helpers sometimes fumble and grab the wrong board—something that Jamison finds frustrating. What’s preventing Jamison from grabbing the desired letterboard himself? Handley doesn’t bother to raise this question, let alone to answer it.
Over time the helper asks gradually more challenging questions, “like multiword answers from the lesson.” Finally, “the helper and speller graduate to the big moment: seeking their opinion about the lesson”—an open-ended question. The next big moment occurs when the speller is able respond to any question about anything—what Handley calls “going open” (a hugely emotional moment for families, Handley reports, including in Jamison’s case, given his seventeen years of being “locked in”). But if these kids already have perfect spelling and are as packed with prior knowledge as Handley claims, why can’t they type out responses to open-ended questions from the start?
A third question that emerges and remains unanswered pertains to facilitator dependency. When Handley and his wife start facilitating Jamison, they have to start all over with “known” questions. “At first”, Handley notes, “it was a lot clunkier than what Jamie was able to do with EV [Elizabeth Vosseller]” or with DM, Jamison’s regular facilitator, to whom Handley & Co have to drive 50 miles to see—first every day, then every two weeks. As Handley reports, “Jamie’s spelling is really smooth and fast; I’m not sure what DM is doing differently…”; he is “nowhere near as fast spelling with me as he is with DM”. DM was soon able upgrade Jamison from “the three boards” to a 26-letter stencil board, and for months “remain[ed] the only person on the planet Jamie was ‘open’ with”. It takes Handley about four months of practice with Jamison (from the time of Handley’s four hours of training at Vosseller’s clinic) before they’re fluent together. Handley reports that now he no longer prompts Jamison, and “when he spells with me, I hold the board still and only call out the letters as he spells them.”
Occam’s Razor favors an alternative account. While experienced helpers are experienced at sending cues to spellers, novice parents take a while to get there. Novice spellers are less responsive even to the cues of experienced helpers; the three boards are at first a necessary supplement to those cues. Finally, what looks like sudden literacy, including the ability to spell words never seen before like “cracker jack,” unexpected stores of prior knowledge (herbivore), and arithmetic skills that were mastered without any active practice—all of which completely defies everything we know about how children learn things—all this output is actually authored (presumably subconsciously) by the helpers.
Or, to summarize this alternative account in two words: “Clever Hans.”
Clever Hans makes no appearance in the writings of S2C/RPM proponents. Instead, their basic premise, as Vosseller puts it, is a “brain-body disconnect”: “the brain is sending perfectly clear messages, the body is not receiving it.” Or, as Handley puts it:
Never read the body language of a nonspeaking kid. The motor planning challenges that make speech impossible also mean that the body may not reflect what’s going on in the mind at all…. Jamie could appear preoccupied or uninterested when in fact he’s listening intently.
Handley doesn’t attempt to reconcile the impossibility of speech with the fact that, like many kids who undergo facilitated communication, Jamison can pronounce some words and phrases: “shower please”; “go car”; “help please.” Similarly, Handley fails to reconcile Jamison’s purported “ocular apraxia” (the purported reason why his eyes “bounce all over the letterboard to find letters”) with the well-coordinated eye movements he and Dr. Jack marvel at in the video of Jamison typing (the video shows Jamison’s eyes but not his fingers).
This aside, here we go again: autism is a motor/motor planning/motor execution disorder. We should ignore all the indications that these children are not absorbing language and information about the world and instead “presume competence” (as in presuming that they already know everything that their regular ed peers have learned from their years in regular ed classrooms). Handley appears unaware that such notions have been around for at least three decades—let alone of all the counter-arguments against them.
And where have we heard this before?
[c]ognition is already there, as in fully and completely there. These kids are as smart as (probably smarter) than [sic] any “normal” kid of the same age. These lessons aren’t helping the child learn to think or process; they can already to that. The purpose they’re really serving is to connect the brain to the motor, to allow these complex thoughts to come through the letterboard by helping nonspeakers do the thing that’s actually hardest: getting their body to move the way their brains wants it to.
And just how does S2C connect the brain to the motor? While there’s some equivocation, purportedly the core problem is with fine motor control in particular. That’s why these kids can’t speak [sic] or touch type. And that’s why S2C shifts communication from fine motor to gross motor: to shoulders and elbows combined with extended index fingers. But why the letterboard has to be held up; why kids need to be prompted to use it (Handley likens the prompts to “training wheels” for board use); why they need to start with three separate letterboards; why such intelligent and observant human beings (more on that below) aren’t already pointing to letters with their index fingers long before their parents resort to S2C: all of these questions go unacknowledged and unanswered.
Instead, the closest we get to an understanding of how S2C works its magic is when Handley tell us that “the S2C people call the interaction a ‘dance’,” noting that novice helpers are like “the crappy dance partner.” He forgets that, in dance, one of the partners is the leader, and that good leaders provide all sorts of subtle cues to cause their partner to move exactly as they want them to.
Forgetting as well his debt to his forebears, Handley is ready to re-reimagine autism just as it was reimagined 30+ years ago by the original proponents of facilitated communication:
We are taught, very incorrectly I now believe, that kids with autism miss social cues, that they aren’t savvy with interpersonal dynamics, and yet, I’m watching Jamie demonstrate extraordinary sensitivity and awareness of those around him…
These kids aren’t socially clueless. They are sensitive and generous.
And they’re also intellectually superior. When Handley asks Vosseller whether any non-speaking kid she’s encountered has ever turned out to be cognitively impaired, her reply is “none so far.” Vosseller, rather, “assures me that nonspeakers are the most acute, best listeners on the planet, because that’s been their only option for so long… These kids aren’t cognitively disabled. They are extremely smart.”
Or, as Handley puts it, “brilliant”. Elaborating in his interview with Dr. Jack, he reports on how good Jamie got at Spanish just by listening to his siblings do Spanish drills, and on another boy who “knows computer languages because [his mother] owns a computer server company and they talk, you know, programming languages and he picked up on all that.” Reiterating the “keen listening skills”, Handley concludes, “they are sponges, and they don’t miss anything. They don’t miss anything.” Nay, “they are higher-order beings.”
As the parent of an autistic kid in the middle of the autism spectrum, diagnosed multiple times as moderate, I’m bemused by such takes. My son misses a ton. He does know programming languages—many of them—but not because I happen to be a programmer and sometimes chat about programming within earshot (I should say, “within cochlear implant-shot”; he’s deaf). No, sorry, he knows programming languages because he’s majoring in computer science in college and has taken dozens of computer science courses. He’s also majoring in math, and has done well in some very challenging math classes. So I’m not saying he’s not brilliant. Maybe he is. But I discovered last week that he didn’t know two words he’s certainly heard many times in the course of his 23 years of cochlear implant-enabled hearing: the words “thigh” and “calf”. He’s heard them, but he’s never paid enough attention to sponge them up. He knows them now only because I taught them to him explicitly a few days ago.
To assume that these kids are sponges and that they don’t depend on a great deal of explicit instruction does them a great disservice. Handley, though, is completely against one of the most effective forms of explicit instruction in autism: ABA. Certain that ABA is only about behavior modification and not about teaching, and angered that ABA professionals reject the re-redefinition of autism as a motor disorder, Handley suggests that a gigantic ABA Industrial Complex opposes S2C only because it challenges the livelihood of its constituents. (He has similar issues with ASHA, the American Speech Language Hearing Association, which has a position statement critiquing RPM.)
Handley is the parent of a non-speaking son, and it’s quite possible that he is a true believer. As I’ve said before, it is not my mission, or the mission of the other FC critics I know, to attack parents qua parents. But Handley is also a huge name in autism and commands a great deal of influence. In his Dr. Jack interview, he suggests he will be actively campaigning to get ASHA to overturn its position statement, to get ABA people out of autism classrooms, and to encourage more and more parents to use S2C and sue their insurance companies for coverage.
In addition, some of his claims are factually misleading if not outright false. For one, he touts Elizabeth Vosseller as a “trained and certified SLP” (speech-language pathologist), neglecting to mention that she practiced for over a decade without an SLP license. Then there are Handley’s remarks about Jaswal et al.’s S2C eye-tracking study. He suggests, first, that the study resolves all questions of authorship in S2C and, second, that it was published in “the prestigious journal Nature” rather than a disreputable pay-to-publish subsidiary of nature.com that goes by the name “Scientific Reports”. There’s been enough discussion about where Jaswal et al.’s paper was actually published that Handley should have known better well before Underestimated: an Autism Miracle went to press.
Handley has said of Andrew Wakefield, whose discredited research purportedly showed that the MMR vaccine caused autism, “To our community, Andrew Wakefield is Nelson Mandela and Jesus Christ rolled up into one.”
Fast forward 10 years, and Handley is now saying that Elizabeth Vosseller deserves the Nobel Prize for her work with S2C.
Curiously, only in connection with the ASHA position statement does Handley make any mention Soma Mukhopadhyay and her version of “spelling” (RPM). Even though the differences between the two methods are trivial (Handley characterizes Soma as more “aggressive”), even though Vosseller originally trained in RPM (albeit later expunging all references to RPM from those web pages that are under her control), and even though Soma began using RPM some two decades prior to Vosseller’s training in it, Handley suggests that Vosseller is “the first one to figure this out.” One can’t help feeling a bit sorry for Soma—surely she deserves a Nobel Prize at least as much as Vosseller does—and a bit bewildered by her near complete omission from Handley’s miracle cure narrative.
Even more curiously, Handley makes zero mention of vaccines—even though his anti-vax advocacy dates back at least to 2005 and his anti-vax book came out just three years ago. Mysteriously, the web page of Handley’s anti-vax organization, Generation Rescue, has expired, and its Facebook Page is now exclusively focused on Handley’s latest book and on the miracle of S2C. It’s as if Handley no longer wants people to know that he believes (has believed?) that vaccines cause autism. Perhaps (particularly as Covid vaccines go mainstream) he doesn’t want to lose half his audience, or perhaps, for all his rhetorical acrobatics, he finds it difficult to reconcile the vaccine injury theory of autism with the unlocked genius theory he’s now so heavily invested in.
37 thoughts on “Underestimated: How Vaccines Create Geniuses and How Letterboards Unlock Them”
I couldn’t follow this. What exactly do the helpers do? What’s on the three boards? How is S2C any different from Facilitated Communication?
He doesn’t specify, but what would makes sense to me is the “eight letters each” comprise the entire alphabet minus the rarest letters (“X” and “Z” perhaps?). So board 1 would have A-H; board 2 would have I-P, and board 3 would have Q-W and Y.
There was a quote I neglected to indent that is now indented. Hopefully that clears up any other confusion, but let me know.
I wish I had read this article before buying the book “underestimated ” about the authors belief in vaccines causing autism and all the other quack interventions. I have got half way through book and this has put me off reading the rest.
Although i already bought the Kindle edition of the book of J.B. Handley, thank you for your detailed review of his book so I no longer need to rush to read it. I was expecting you would repeat a certain factual claim against S2C that you made last year but you seem to mention everything else but not that certain claim. I will have to check my public comments that I made last year on AutismFC website about your claims against S2C and get back to you, although as I informed an 85 year-old father of a 55 year-old daughter who was introduced to Facilitated Communication back in the 1990s but has not been able to maintain its use for the past several years “I realize I am having great difficulty initiating “new suggestions” and I have urgent family matters that I have been focusing on.” Still, I hope to write more detailed comments about your numerous recent blogs on FC, RPM and S2C.
I neglected to mention that, in videos of S2C/RPM where the held-up letterboard is fully visible, it generally moves around in ways that influence letter selection. I left that out because Handley does not raise the issue here.
Thanks for the quick reply. I believe that “certain claim” was more specific (what i would characterize as intentional fraud by at least one communication partner of S2C) and worth mentioning in detail, which I still plan to do when I have a chance to find your exact wording. Although JB Handley has been a public advocate concerning autism for about 16 years (his son is only 18 now), it seems he somehow completely missed knowing about FC, RPM or S2C until about 2 years ago when his son was 16. As I have publicly mentioned elsewhere, I am in private email contact with JB Handley
I finally took the time to check my AutismFC website and I found I had posted there tweets from you and a reply from James T. Todd from July 31, 2021:
First you provided the link to a 25 minute video from July 30, 2020 of Ben Breaux who uses S2C:
Coronavirus Information Series: “Coping with COVID-19 Through the Arts and Advocacy” with Ben Breaux – Autism Society (autism-society.org)
I remember that you stated you slowed down the video and could determine which letters Ben actually pointed to and tweeted on July 31, 2020:
“In the FB video, you’ll see that there’s very little correspondence between the sequence of letters that the boy’s index finger comes closest to and the sequence of letters that spells the messages that his facilitator reads out loud and attributes to him…. For example (one of many!), the facilitator reads out loud the word “autism” after a pointing sequence that gets nowhere near the latter “a”.”
Then James T. Todd tweeted:
“Seen lots of FC & some RPM like this. The letters called out obviously not those pointed at. Sometimes entire sentences arise from a handful of letters. I call this “Movie Morse FC.” In movies, a few letters of (usually) fake Morse code is read as a long message.”
I tweeted on August 18, 2020 to both of you (noting that I only meant to reply about FC so I was calling James T. Todd a liar and not you because I did not slow down the video myself where Ben Breaux used S2C) but never received a reply from either of you:
“Please provide proof of your public claim or else retract this tweet…. I should have been specific that I only request such proof in connection with Facilitated Communication. Without such proof, I am calling you a liar who is causing great harm to the most vulnerable persons.”
Above tweets are publicly available at my AutismFC website message #34 at:
Oops! I meant July 31, 2020!
Ben Breaux is here:
You can slow this down yourself and see how Ben is not pointing to the letters the facilitator is calling out. The witting or unwitting deception is there for everyone to see. No further proof is necessary.
Then there is what I call the “gun rights” debacle in the middle of this interview, which is also very telling.
I am afraid at my old age, lack of technical skills and physical condition, I cannot slow down the video but I hope JB Handley or some of his dozens of followers will do so. Again as I tweeted back in 2020, in my thirty years as a facilitator, I only record the letters actually pointed to and I never heard of any other facilitator doing Facilitated Communication committing such a fraud, despite the tweet of James T. Todd. I am not at all familiar with S2C, which was being used by Ben Breaux and the son of JB Handley, to comment.
I didn’t slow it down per se; I simply pushed the pause button a bunch of times and took notes.
You’re free to send Handley’s people my way–though I believe you have already let them know about this post.
(Handley’s followers aren’t nearly as polite as you are, as you can see in the comments in the April 6th post on Generation Rescue’s Facebook page: https://www.facebook.com/GenerationRescue).
No need to slow it down or even pause it. From about 4:30 in the video, when the interviewer is asking Ben about FB, Ben’s finger is toggling back and forth roughly between M and T on the card, and his mom translates that as “Yes, I love Facebook.” Say what? His finger got nowhere near either the F or the B, much less any of the other letters.
I get that they want desperately to believe their son is communicating, but I’m just not seeing it.
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“Handley notes that inexperienced helpers sometimes fumble and grab the wrong board—something that Jamison finds frustrating. What’s preventing Jamison from grabbing the desired letterboard himself? Handley doesn’t bother to raise this question, let alone to answer it.”
I’m not interested in engaging the “author” of this “piece”, but for any other readers who are wondering the same thing, apraxia is what is preventing Jamie from grabbing his desired board. Individuals with apraxia have significant issues with initiation. JB talks about this on his blog last month (Jamie’s work with an OT online) but there is also tons of info about apraxia on the I-ASC.org website. Think of lying in a cozy bed on Saturday, and you have to tell yourself to get up and get going, but on a pervasive scale. Consider yourself fortunate if you or your child do not need to go through their day with constant motor coaching. Many of us with apraxic children work on self-commands and initiation, but it’s not an over night success. Jamie may well be able to initiate better now, but even after 4 years of open communication, my child will still not bring me her board to initiate a conversation. We work on pedaling a bike, which she can’t do independently, by telling her, “Tell your body to push the pedal”. Many nonspeaking people have blogged about this issue. Ido Kedar’s essay on motor difficulties is fabuous- http://idoinautismland.com/?p=376
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Understanding in general about apraxia is so limited.
Do you have a better reference? A scholarly, peer-reviewed article that contradicts Wikipedia and/or explains how it is that one can’t grab the desired letterboard but can point to desired letters on the board?
Update: My piece appears to have hit a nerve over at https://www.facebook.com/GenerationRescue, where J.B. Handley complains about my suggestion that “even the independent typers are heavily prompted by their communication partners.”
“Haters gonna hate,” he concludes.
Handley’s remarks are followed by several dozen concurring comments calling me “wretched” and “angry” and “hateful” and accusing me of ignorance about autism, of ignorance of the various RPM/S2C videos that supposedly show independent typing, and of antipathy towards non-speakers.
Among them is someone who has the same first and last name as a parent who once talked to me for an hour about tutoring her high-functioning daughter. (She later opted for Lindamood Bell instead of the sentence-focused tutoring services I was offering).
One person accuses me of comparing autistic people to horses–not noticing my remark that the Clever Hans Effect has been replicated in humans in general. We’re all potentially like horses!
Re apraxia: apraxia is not a disorder of initiation. Apraxia that is severe enough to prevent a child from grabbing a desired letterboard should also prevent them from grabbing a desired food item. I haven’t heard any reports of this level of apraxia in individuals undergoing RPM/S2C/FC.
Katharine, I am the “parent w/the same first/last name who once spoke to you about tutoring for her HF daughter”- for the record, I didn’t not hire you b/c of your rate. The reason I didn’t hire you was because I didn’t feel that what you were offering was what was needed- my daughter needed remediation, not tutoring. She needed to actually learn basic skills she was lacking, from an evidence-based program, as we’d done when she was much younger, delivered in an intensive program. I ended up getting a neuropsych eval, which revealed the depth of her issue, and the recommendation was to do Lindamood Bell’s V/V program.
My daughter recently completed 120 hours at Lindamood Bell, 20 hrs/week for six weeks to learn to visualize, which is what was interfering w/comprehension. It’s called the Visualizing and Verbalizing program (V/V). It changed her ability to comprehend, so then she was also able to take approp notes during lectures, comprehend passages fully, and more. Now starting next week she is moving on to another 32 hours of taking these new tools and learning to write.
We needed to get to the actual root of the issue in order to truly teach her so that she’d be able to do these things on her own. This is how she got to the point of being described as HF, w/evidence-based programs like this. She was initially in the middle of the spectrum.
I wanted to clarify your statement so that you would have the facts re why we ended up going into another direction. It wasn’t about paying you.
I have read your message carefully and appreciate your clarification. I do not provide Lindamood Bell-type services; my focus is on syntactic tools for clear and connected writing and sentence-focused reading instruction. I have edited my comment to reflect your clarification.
I invite you to return the favor and reread my blog post carefully, and then either explain, with specific examples, why you found it “beyond disappointing” and “angry” and “ignorant”, or retract the statements you posted on Generation Rescue’s FB page.
Wait- you edited my comment? You consider that a favor?
I edited my comment. Now you can edit yours. (The ones about my ignorance and anger.)
“Re apraxia: apraxia is not a disorder of initiation. Apraxia that is severe enough to prevent a child from grabbing a desired letterboard should also prevent them from grabbing a desired food item. ”
Wow. You really know absolutely nothing at all about apraxia. Please, please educate yourself, because pretty much every part of this is completely wrong. Difficulty with initiation is extremely common with apraxia, and inconsistent performance is a classic hallmark of apraxia. I honestly wonder what you think you know about apraxia if you’re unaware of such basic facts about the condition.
Hi, ettinacat–Thank you for your interest in this topic! Here are some general, research-based reviews of apraxia. Feel free to get back to me after you have a chance to read these:
Gross, R. G., & Grossman, M. (2008). Update on apraxia. Current neurology and neuroscience reports, 8(6), 490–496. https://doi.org/10.1007/s11910-008-0078-y
Park J. E. (2017). Apraxia: Review and Update. Journal of clinical neurology (Seoul, Korea), 13(4), 317–324. https://doi.org/10.3988/jcn.2017.13.4.317
Wheaton, L. A., & Hallett, M. (2007). Ideomotor apraxia: a review. Journal of the neurological sciences, 260(1-2), 1–10. https://doi.org/10.1016/j.jns.2007.04.014
In my own son, initiation was very much a part of his dyspraxia, although now as a young adult he is doing much better. He was in a specialised elementary class for dyspraxic children without an autism diagnosis. Here they are using the term Developmental Coordination Disorder more frequently now, although I believe the speech paths may still call it apraxia of speech.
For my son, who speaks, the breakdown was very much related to motor planning vs instinct. If he was hungry and saw an apple, he would take the apple with no issues, while if asked to point to an apple or banana on a picture board, then choose the fruit on the table, he would frequently mess up. He would later say “but I wanted the apple!” even though he had chosen the banana. I do remember when he was quite young, if I opened the cupboard and put on my shoes he would choose a pair and put them on, but if I specifically said “put on your red trainers'” he would freeze up and look completely lost. His childhood consisted of daily prompting and coaching to get ordinary things done.
I’m still friends with one of the mums from the autism class across the hall whose son speaks and types on a tablet. I know he also struggles with initiating some motor activities while others, after years of practice, are very fluid. I do wish more families and professionals understood motor planning disorders. I felt fortunate to have had a specific programme in our city, but many do not. I’d not heard of this family or s2c method before today, but happy they found something that works for them!
For other readers new to the world of DCD/ Dyspraxia/Apraxia, here are a few more articles-
Thank you for your polite and informative comment. Apraxia/dyspraxia is absolutely a motor-planning issue.
When I’m thinking of initiation, I’m thinking of the ability to initiate actions in general, including actions motivated by one’s own desires, as opposed to the requests made by others: whether it’s grabbing a desired pair of shoes, moving one’s legs to walk over to a desired destination, grabbing a desired letterboard, or pointing to desired letters on a letterboard. I am not aware of any empirical studies that find that there are individuals who have the initiation and motor skills to point to letters on letterboards, but not the initiation and motor skills to pick up specific boards.
Second update: Generation Rescue has taken down its April 6th post about *this* post!
(Thinking this might happen, I took a screenshot of it earlier today, along with some of the more outrageous comments made by Handley’s followers).
I have a severely autistic non verbal son. I am praying this method will work for him. I know there are plenty of naysayers and skeptical people. But if you have never raised a non verbal child, maybe you have no right to criticize. I would much rather assume it will eventually work for him and find out it did not, rather than assume it would not work and find out years later it would have. Don’t you worry a bit about us parents of non verbal children being so disappointed about what ever the outcome is. We have been told the brains or our children and even adult children are between aged 12 to 18 mo capability. We know all too well how to weather disappointment. If nothing else seems to be working for communication either what do we have to lose? So glad the rest of you know what is best for other people’s children. Could I suggest you simply pray for them instead?
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I agree with you. I have not only seen S2S and similar used live and via video, but I also know trained professionals who are now teaching it, lifelong professional educators who would not dare to fake communication for money! I think that every field has good and bad providers, and this one is no exception. I also run from anyone providing broad blanket statements on any therapy, and not having actual personal experience only adds to my lack of trust.
I wish you the best with your son. My criticisms here are of pseudoscience and quacks, not of parents. Autism has been an extremely powerful magnet for pseudoscientific thinking, from last century’s psychoanalytic refrigerator mother assumptions re the “child locked inside” to today’s Spelling to Communicate assumptions re the “child locked inside” and everything in between (diets, auditory integration therapy, sensory integration therapy, floor time therapy, positive behavior therapy, etc etc). I am the mother of an autistic child and found it necessary to research and test everything before committing to it. If you decide to try out letter boarding, it will be easy for you to test it by blindfolding yourself and having someone ask your child questions that you don’t know the answer to. Don’t believe the many people who will tell you “don’t test”. You have to ask yourself: why are they insisting on that? Imagine if we applied the same logic to medical procedures!
I find this response so disturbing for a multitude of reasons. Are you also bashing sensory integration, behavioral interventions, auditory therapies, and more?? You are aware that there are different types of autism, and what works or doesn’t work for your son isn’t the final answer for others with autism?
Do you have any knowledge of apraxia, and how it functions (or prevents functioning) in individuals?
I find this response so disturbing for a multitude of reasons. Are you also bashing sensory integration, behavioral interventions, auditory therapies, and more?? You are aware that there are different types of autism, and what works or doesn’t work for your son isn’t the final answer for others with autism?
Do you have any knowledge of apraxia, and how it functions (or prevents functioning) in many autistic people?
How about the existence of splinter skills- are they fake as well?
If you’re interested in learning more about what the reviews of the peer-reviewed research show, Controversial Therapies for Autism and Intellectual Disabilities is a good place to start. You can then look up the primary sources cited. After you’ve had a chance to go over this research carefully, I will look forward to hearing from you again.
I am absolutely baffled by the amount of misinformation in this post. I am an SLP and an S2C practitioner. I took the S2C course to determine whether I thought it was a valid form of communication.
SLP’s so readily accept that Apraxia of Speech is a disconnect between the brain and some body parts (the articulators). Yet, the idea of Global Apraxia (disconnect between the brain and all body parts) seems difficult for some to accept.
In Apraxia of Speech, receptive language is usually age-appropriate. HOW is receptive language assessed? Using motor skills: scanning, reaching, pointing, etc. ALL forms of testing require motor control.
If individuals have difficulty with motor control, how can we reliably test their understanding of language?
I absolutely understand that the idea of S2C can be overwhelming at first as there is a lot of new information to learn and understand. All of the criticisms in this article have an explanation that is addressed in the S2C course (the course S2C practitioners must take).
To any parent reading, I encourage you to speak with an S2C Practitioner as they will be able to answer your questions.
To the author, I encourage you to be open minded when critically thinking about Autism &
Apraxia. I am one of many educated professionals that have seen this approach be effective (often times much more effective than traditional therapy approaches, including ABA).
The true experts are the nonspeaking Autistics themselves. Are you 100% certain that what’s being spelled is not their true thought? If so, you must have indisputable evidence that their cognition is practically nonexistent. The “evidence” of low cognition, IQ, receptive language, etc. is based off of test measures that are DEPENDENT on purposeful motor skills (the core difficulty for spellers). You are discrediting voices and keeping others from ever getting the chance to express their thoughts.
Thank you for your comment. I believe that you are sincere when you share your belief that “All of the criticisms in this article have an explanation that is addressed in the S2C course”. However, most people aren’t going to be signing up for a course just to learn what those arguments are. Nor are they going to be convinced by a simple assertion that these arguments exist. So I invite you to post these arguments here and indicate which of the above criticism you think they address.
As for 100% certainty, the only route to that is rigorous message-passing testing. And yet not a single S2C facilitator has been willing to participate in a public, publishable test that would unequivocally establish who is authoring the messages. That should raise serious red flags.
Regarding cognition in non-verbal individuals, it’s important to recognize that cognition has both verbal and non-verbal components. Non-verbal individuals are well known to often have intact non-verbal cognition: jigsaw puzzles are a common area of strength; we also find non-verbal individuals with extraordinary skills in complex arithmetic and feats of memory. Ravens Matrices are a standard way to eliminate language as a factor in intelligence testing, and should absolutely be included in assessments of non-verbal individuals.
The reason that “Global Apraxia (disconnect between the brain and all body parts) seems difficult for some to accept” is because no solid, empirical, peer-reviewed research has established that such a phenomenon (1) overlaps substantially with non-speaking autism; (2) explains the observed behavior patterns in autism; and/or (3) justifies facilitators/“assistants” holding up letterboards for individuals with autism and prompting them to type out letters with their index fingers. Nor does any of this eliminate known issues with facilitator cueing and influence. I invite you to visit FacilitatedCommunication.org, which contains a comprehensive repository of FC-related research and critical commentary, including on the various claims that FC proponents have made about global apraxia and other alleged movement/motor disorders in autism.
With your SLP credentials, I’m sure you are aware that your leading professional organization, the American Speech-Language Hearing Association, has a position statement against Rapid Prompting/Spelling to Communicate:
“It is the position of the American Speech-Language-Hearing Association (ASHA) that use of the Rapid Prompting Method (RPM) is not recommended because of prompt dependency and the lack of scientific validity.”
“Although RPM or Soma®RPM is primarily associated with HALO-Soma and Soma Mukhopadhyay, foundationally and procedurally similar alternative forms have appeared, such as “Informative Pointing” (Iversen, 2007), “letterboarding,” and “Spelling to Communicate,” and this position statement is applicable regardless of the name used for the technique.”
This should raise serious concerns, including the concerns you yourself raise about “discrediting voices and keeping others from ever getting the chance to express their thoughts.”
My comment was to help show parents that this article’s author is not well-versed in Spelling to Communicate or Apraxia. My thought is that anyone choosing to write such a polarizing article would certainly have gathered all relevant information prior to posting. When you say “most people aren’t going to be signing up for a course just to learn what those arguments are. Nor are they going to be convinced by a simple assertion that these arguments exist”, it indicates that you do not have all of the information regarding S2C. The reason that is puzzling to me is because the article is written with a definitive tone.
I am very aware of the statement by ASHA and I believe they are wrong. My intent is not to argue and I will leave my comments with this: Non-speakers have been misunderstood for too long and there are many open-minded professionals (myself included) that are actively working to ensure that their voices are heard.
P.S. The Ravens Matrices also requires purposeful motor control to complete.