Why Won’t You Accept My Anecdotes as Proof of Independent Communication?
A commenter on social media asked, “Why won’t you accept my anecdotes as proof of independent communication?” To address this question, I’ll use an example from the 2004 pro-FC film Autism is a World to frame a discussion about the difference between anecdotes and reliably controlled evidence. Autism is a World is getting some attention because of the 2024 film Tell Them You Love Me, so I thought I’d use this opportunity as well to further explain the problems with FC that were minimally discussed in TTYLM. I’ll link reviews and relevant blog posts about the two films and this topic below.
Sue Rubin’s facilitators hold a keyboard in the air RPM/S2C-style even though in the film, they call it FC. The facilitator pictured is not Sue's mother, Rita. (Autism is a World, 2004).
Even though the technique is referred to as Facilitated Communication (FC) throughout “Autism is a World,” Rita Rubin and other facilitators in the film use a Rapid Prompting Method (RPM)/Spelling to Communicate (S2C)-like form of FC by holding a keyboard in the air while Sue (Rita’s daughter) pokes at it with an outstretched finger. Sue is minimally speaking but can communicate her thoughts with spoken words and gestures. She also has the fine and gross motor skills needed to set the table, pour liquid into a glass, pick out food at the grocery store, walk and move about a room without assistance, and the like.
In this example, Rita describes the moment she started believing in FC:
I asked her [Sue] if she could type three vegetables and you can see it was really difficult for her to get anything and it just looked like gibberish to me. I saw that she was doing SPSISPI and so I said to her do you mean Spinach? And then she got it. She typed Spinach. So, then I said to her one more and you can go. She typed Kale. I’ve no idea where that came from because I never buy Kale. I don’t like kale. I don’t make kale. She’s never had kale but anyway she typed kale.
Image of Kale by Kiona
To Rita, this interaction was “proof” that her daughter typed out “spinach” and “kale” independently. This is her belief, an anecdote.
Anecdotes in and of themselves aren’t “good” or “bad.” In fact, anecdotes are often the starting point of scientific inquiry. And, here, Rita believes her daughter had a breakthrough with FC. In a matter of minutes, she went from “typing” random letters (SPSISPI) to typing “spinach” and “kale” even though, by Rita’s own account, Sue had never had kale and was not exposed to it. Rita had no idea where her daughter came up with the idea.
Nonetheless, I have questions that make me want to investigate further.
How is it that Sue transitioned within a matter of minutes from typing “gibberish” (SPSISPI) to perfectly spelling the word “spinach.” SPSISPI isn’t even “invented” spelling, which is common in children first learning to write. Beginning spellers tend to rely on sounds of letters (and not the rules of spelling) to approximate words. In my area, no one pronounces the word spinach with a strong “a” or “ah” sound. They pronounce “ach” in the word as “itch.” Beginning spellers here might, for example, spell spinach “spinitch” or “spinich.” How is it that Sue only spelled “spinach” correctly after Rita—her literate facilitator—decided that’s what she was trying to say? If Sue understood the word and could spell it independently, why would it matter if Rita knew what the word was or not?
Which of the two individuals in this situation had knowledge and experience with kale? Which of the two would be most likely to make an association between spinach (a leafy green vegetable) and kale (another leafy green vegetable)? Which of the two had the literacy skills to correctly spell kale? Beginning spellers would likely leave off the “e.” The rules of written language are not innate. They need to be taught.
Proponents are taught in FC/S2C/RPM workshops to accept unexpected or surprising words as “proof” of independent communication, so it doesn’t surprise me that Rita interpreted this “unexpected” FC-generated word as a breakthrough.
But in observing Sue’s and her facilitators’ behaviors during letter selection throughout the film, other questions arise about authorship:
If Sue has the fine and gross motor skills to pour liquid into a cup, set the table, etc. why does she need someone to hold a keyboard in the air to type?
Why does Sue push the keyboard away or take it from her facilitators and shut the cover if this is her “preferred” form of communication?
Why do her facilitators take away her spoons (Sue enjoys holding the spoons and watching water from tap spill over them) to get her to cooperate during FC sessions?
Why do Sue’s facilitators stare intently at the letter board while Sue, at times, is not looking at the letter board or is not interested in being facilitated?
Why is Sue made to “spell” (via FC) when she is perfectly capable of making her thoughts known both with spoken words and with non-verbal communication?
At the time the film was made, Sue had received some academic and life-skills training, but her progress was purportedly limited. But, with the introduction of FC, her IQ score jumped an incredible 104 points (from 29 to a facilitated score of 133).
Staff at the O.D. Heck center devised a way to “blind” the facilitator from seeing pictures the clients saw by using a divider set on a table during a controlled message-passing test. All the facilitated responses were based on images the facilitators saw and not images the clients saw. (Prisoners of Silence, 1993)
Something, to me, just does not add up. Even though I have questions, It is not possible to determine the depth of Sue’s independent language, academic, and literacy skills by observing her behaviors in a film. She may or may not have the language comprehension and literacy skills to type “spinach” or “kale” or other messages on her own and without interference from a facilitator. But what we do know is that every time FC has been tested under reliably controlled conditions over the past 30+ years the results show that facilitators—and not their clients or loved ones—are influencing and controlling letter selection. When controlled studies show the same results over and over and over…this becomes a body of evidence.
Reliably controlled testing—sometimes known as message-passing—is widely considered the only way to determine authorship in FC/S2C/RPM. They separate facilitator behavior from client behavior which moves us from anecdotes (people’s beliefs) to a form of data collection that can help rule in or rule out facilitator influence and control over letter selection. It moves us from opinion-based anecdotes to more objective data to consider.
The goal of the testing is not to “trick” the individual being subjected to FC. Nor is it an I.Q. test. Rather, the goal of this type of “empirical” or “quantitative” testing is to give the individual an opportunity to express his or her thoughts without interference from the facilitator. Often these tests contain several types of activities (picture identification, answering questions the client knows, but the facilitator does not, etc.). The facilitator and client interact with each other the same as they always do during the FC/S2C/RPM session, except the facilitator isn’t the one asking the questions nor does s(he) have access to the test protocols ahead of time. I know facilitators are taught to resist this type of testing, but there is no evidence in the literature indicating that non-speaking or minimally speaking clients, students, or family members participating in the testing are unduly traumatized or made anxious by the procedures. The only people who appear to be anxious or afraid of authorship testing are the facilitators.
I think we can all agree that the goal for individuals like Sue (e.g., non-verbal or minimally speaking individuals with complex communication needs) is to provide access to communication methods, techniques and equipment that allows the expression of independent thought without interference from a facilitator. This independence cannot be proven by FC-generated messages, regardless of how sincere facilitators are in the veracity of their claims. No one disputes that facilitators believe in FC/S2C/RPM and other facilitator-dependent techniques or doubts their steadfast determination to continue using these techniques despite all evidence against them. But, if proponents want to quiet the voices of doubters and critics, then they’ll have to move beyond opinion-based anecdotes and prove their claims using reliably controlled testing.
Recommended Reading
Controlled Studies
Systematic Reviews
Beals, K. P. (2024). Can message-passing anecdotes tell us anything about the validity of RPM and S2C? Evidence-Based Communication Assessment and Intervention, 1–14. https://doi.org/10.1080/17489539.2023.2290298
Beals, K. (2022). Students with Autism: How to Improve Language, Literacy, and Academic Success. John Catt Educational. ISBN: 9781915261373
Singer, G.H.S., Horner, R.H., Dunlap, G., and Wang, M. (2014). Standards of proof: TASH, facilitated communication, and the science-based practices movement. Research and Practices for Persons with Severe Disabilities, 39 (3), 178-188. DOI: 10.1177/1540796914558831
Travers, Jason C. and Pennington, Robert C. (2023). Supporting Student Agency in Communication Intervention: Alternatives to Spelling to Communicate and Other Unproven Fads. Teaching Exceptional Children. DOI: 10.1177/00400599231171759
Select Blog Posts
Autism is a World is a world
Thoughts about “Tell Them You Love Me,” Anna Stubblefield, and FC/S2C/RPM