An extended infomercial for Spelling to Communicate via Penn State and all of our tax dollars
This past week the Trio Training program at Penn State University hosted a three day conference called “Understanding Autism through the Actually Autistic Lens”, billed as “A virtual conference dedicated to autistic voices to better provide perspectives to those who serve and advocate for the autistic community.”
Unfortunately the “lens” in question was in large part not “actually autistic.” True, there were over a half dozen individuals who identify as autistic and whose fluent, conversational speech dominated much of the conference. But much of Day 2 involved (1) the promotion of a variant of facilitated communication, Spelling to Communicate (S2C) by two non-autistic practitioners (Emily Pinto and Brian Tom Foti, both from the S2C AALIVE clinic) and (2), the extraction, via S2C, of messages attributed to two of the autistic presenters, Ben Breaux and Gregory Tino.
Ben Breaux’s presentation shows him frequently looking away from the letterboard while his “communication and regulations partner” calls out letters that he purportedly typed—in some cases letters that his index finger doesn’t even get close to. Breaux frequently appears distressed and stops typing in the middle of his purported messages, directing his attention elsewhere. To get him to resume typing, his communication and regulations partner frequently has to physically reunite Breaux’s hand with the letterboard.
Ben Breaux with his “communication and regulations” partner.
Later on a recorded presentation attributed to Breaux discusses his life story and the apraxia-induced body-brain disconnect (a disconnect unattested in the peer-reviewed science on autism) that purportedly afflicts him. As the voice attributed to Breaux explains, when his mother tested the apraxia hypothesis by asking him to put three teaspoons of sugar into a cup
It wasn’t until she asked me to type on my letterboard what I purposefully wanted to tell my body to do that I was actually able to accomplish this “small” task.
But, brain-body disconnect aside, if Breaux is the one purposefully selecting the letters, how is it easier for him to first type out, letter by letter with an index finger “I want to put three teaspoons of sugar into this cup” (42 different key strokes) than it is to simply put three teaspoons of sugar into a cup?
Gregory Tino is calmer and more focused. He sweeps his hand vertically and horizontally at regular intervals towards the letterboard, and his mother appears to move the board to his pointer finger when it approaches particular letters. These movements are so swift, though, that it’s hard to tell which letters Tino’s finger has actually made contact with.
Gregory Tino with his mother holder up the letterboard.
The chat box was filled with cheers for Tino and Breaux and queries from parents about how they can get their kids started on S2C. A few people (yours truly included) asked questions about facilitator influence and peer-reviewed research on brain-body disconnects. One of the organizers, Terra Vance, later accused us of being “colonizers” and of using our academic privilege to undermine the purportedly authentic voices of those being subjected to S2C.
To her credit, the moderator did turn one question about facilitator influence over to Emily Pinto, one of the S2C practitioners. Pinto addressed this question with these words, which I’ve transcribed from the recorded presentation (now available here):
In the early stages we use a structured lesson format—I’m sure many of you are familiar with Bloom’s taxonomy—we start by asking questions with only one known response. We are focusing on keeping the cognitive task low because the motor task at that point is high—they are learning something brand new. The motor of tracking the letters on the letterboard with their eyes and the motor of poking it with a pencil in their hands. So for example I’m going to read them in a paragraph the Eiffel Tower is located in Paris and then I will ask them the question “the Eiffel Tower is located in what city” and they’re going to spell Paris—there’s no other answer that we’re asking them to spell, so there is no influence because both parties are on level playing ground; we know exactly what that right answer is. As they build better fluency they become more accurate with their eye tracking and poking up those letters, we could increase the cognitive demand of the questions that we ask so we can expand it to semi-open, or words with more than one singular response, and trust that their body is going to accurately take us to the letter that they want because we’ve coached that; we’ve coached them to tap into that purposeful motor. So again I like to refer to it as a cognitive-motor seesaw: you’re always looking at the cognitive demand versus the motor demand and eventually you get to a point where these individuals can answer more cognitively challenging questions because the motor of pointing to letters on the letterboard has become easier for them. More of those neuropathways have become myelinated so they’re easy to cross back and forth between those two things.
Myelination, neuropathways… this sounds pretty impressive—except for the complete absence of references to actual neurological research.
Bloom’s Taxonomy sounds pretty great, too, except it’s irrelevant:
(Nowhere in Bloom’s taxonomy is there a stage where people are asked to parrot back trivia that was just told to them.)
How does telling someone that the Eiffel Tower is in Paris and then asking them where the Eiffel Tower is ensure against facilitator influence? The Ideomotor Illusion to which facilitators/assistants/communications and regulations partners are highly susceptible is especially powerful in cases where they know precisely what answer they are expecting.
In response to a follow-up question about how S2C practitioners ensure that there’s no facilitator influence during training, Pinto elaborated further:
Again it goes back to the same answer about we use lessons as a format so that when you are first teaching the skills of fluency and accuracy in pointing to letters that there is no gray area, um and you’re moving, you’re moving through, you’re moving through Bloom’s taxonomy from you know those known response questions to those more creative questions as their motor reflects a readiness to answer such questions with accuracy. So we establish non-influence in our trainings by using lessons and also making sure that as communication partners and as practitioners that we are going in with a blank slate. I am not coaching the thought; I’m coaching the body. I don’t need to know what they’re going to say to be able to provide support to their motor. And that is critical: we drive that into the brains of our communication and regulation partners and other practitioners. We are not coaching thought, we are coaching the body. Um, so, you know, to say you have an “l” next letter… is find your letter “l-o”, ok “l-o-u”, good… next letter, “d”, ok. They were spelling “loud.” But after that “o” I didn’t know if they were going to “loud”, to “love” to “loyalty”, so I am just coaching that body to go accurately between letters. Um, I can’t coach the thought, but I know I can coach the body.
The connection between “known responses”, “blank slates”, and guarantees against facilitator influence is left unexplored. Also unexplored is how coaching only bodies and not thoughts immunizes you from the Ideomotor Illusion, which is very much a body-based phenomenon.
But perhaps the biggest unexplored question of all is this one: what business does Penn State have in providing a platform for infomercials for a therapy that, according to all the available evidence, suppresses the communicative output of non-speaking autistic people and replaces it with other people’s words?
The Penn State TRIO Training Academy, which describes itself as providing “transformative professional development for TRIO professionals and others who advocate for marginalized and underrepresented populations” and “research-based practices [boldface mine] to transform opportunities for students, schools, and advocates”, is funded through the Federal TRIO Programs. These, in turn, are funded through the US Department of Education, dating back to the Higher Education Act of 1965. The TRIO programs, designed to help low-income individuals, first-generation college students, and individuals with disabilities progress through middle school and beyond, include Upward Bound, Talent Search, and Student Support Services. Higher educational institutions like Penn State can apply for TRIO grants; Penn State’s TRIO program focuses on trainings for professionals who work with the targeted populations.
Past Penn State TRIO trainings appear both valid and helpful: “gain expert knowledge on assisting students in receiving adequate financial aid from programs assisted under Title IV of the HEA”; “Strategies in applying for and gaining admission to postsecondary–specifically the transfer from a 2-yr to a 4-yr institution.”
But not last week’s training, which, it’s important to note, was not sponsored by the Department of Education. As the conference organizers, Terra Vance and Kate Jones of the pro-FC organization Neuroclastic, made clear, Penn State had given them free reign and did not ask them ahead of time about the speakers and their presentations. As Vance put it, “They gave us a stage and told us to say what you need to say.” Thanking them for this unilateral control over the conference, Vance praised Penn State as a “co-conspirator” (at term that, to her, seems to mean “appendage” rather than “collaborator”, and, of course, to connote the polar opposite of “colonizer”).
As if to affirm its role as Neuroclastic’s appendage, the Penn State TRIO training page contained a widget for their Facebook Feed, where there was a direct link links directly to Neuroclastic’s website, thus putting TRIO visitors three clicks away from Neuroclastic’s donation page. Shoehorned into the presentations were also some not-so-subtle infomercials for, and appeals for donations to, Neuroclastic. One presentation also presented an infomercial for yet another FC-promoting organization, Optimal Rhythms.
Anyone who is truly interested in promoting actually autistic voices through research-based practices needs to be asking why the U.S. Department of Education is funding such a stupefyingly unethical venture Pennsylvania tax dollars are going to an institution that has hosted such an unethical venture.
