Review of J.B. Handley’s Underestimated: an Autism Miracle
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.
Recommended Reading: J.B. Handley and the ever-changing cure for autism and Clever Hans: It’s Not About the Horse.
