Review of A Passion to Believe: Autism and the Facilitated Communication Phenomenon

Among the dozen or so FC books published in the last two decades, most of them miracle memoirs written by true believers, one book stands out. Originally published in 1997 by Westview Press, but re-published in 2018 by Routledge, Diane Twachtman-Cullen’s A Passion to Believe: Autism and the Facilitated Communication Phenomenon is a unique and highly disturbing insider account of the original version of FC: the touch-based (wrist-supporting/arm-holding) version that dates back, more or less unchanged, to the 1990s.

A Passion to Believe centers on three facilitators, “F1”, “F2”, and “F3”, and their respective clients, “C1”, “C2”, and “C3”. The three facilitators express a range of rationalizations about facilitation. Their three clients, meanwhile, exhibit a range of linguistic functioning: C1 can speak and type basic wants and needs, C2 is somewhat less verbal, and C3 is fully-nonverbal. Twachtman-Cullen interviews the facilitators, observes FC sessions, and, on a couple of occasions, participates directly in facilitation.

In the process she—and we—gain insights into the facilitator mindset. We hear the facilitators’ mistaken beliefs about autism spectrum disorders—in particular, various versions of the FC-friendly notion that autism is a motor disorder rather than a socio-cognitive disorder. We witness the facilitators’ apparent unawareness of the possibility and ill effects of facilitator influence, even when this influence and these ill effects are obvious to outside observers—for example, Twachtman-Cullen. And we sense the facilitators’ certainty that facilitation benefits their clients by enhancing their ability to communicate.

At the same time, we see the facilitators routinely dismissing what, to outsiders, are clearly authentic, independent attempts by their clients to communicate. F2, for example, repeatedly ignored C2 when he spoke the words “go back to work”, only honoring this request when he later typed it. As Twachtman-Cullen observes:

Thus, true to the tenets of FC, F2 acknowledged her client’s request only when it was rendered via the medium of facilitated communication.

Besides this, we see facilitators chiding their clients when they don't type out messages that accord with expectations. The resulting distress is readily observable to all who haven't drunk the FC Kool-Aid.

That Kool-Aid, we learn, is potent stuff—as Twachtman-Cullen discovered in just a couple of brief sessions of facilitating. Her first session, which involved co-facilitating C2 with F2, began with C2 typing “b” and then “j”.

F2 said, ”bj? bj is not a word.” She prompted C2 to do something about the incorrect letters. He moved his head and his hand towards the keyboard, but I did not have the sense that he had a specific course of action in mind. F2 then positioned my hand so that it was actually under C2’s wrist. She then held on, tightly, to both my hand and his wrist, and I felt distinct, unmistakable pressure from her hand. My clear impression at this time was the both my and C2’s hands were being moved around the keyboard.

But then later, facilitating C2 on her own:

I had no sense of where this client was going, or what he was doing. He was really like dead weight in my hand, and I remember thinking as I facilitated with him that I must be doing something wrong, because nothing was happening.

In blaming herself for the absence of typing, Twachtman-Cullen hints at how much implicit pressure there is on facilitators to facilitate out messages. Even more damning is how F2 responded to her predicament: “You might want to lead him to the letters when you first start.”

Twachtman-Cullen complied:

…following F2’s directive, I actually led him in the general direction of the e. Once there, I said, “Close.” Obviously, I had had a word in mind! I was not conscious of this at the time, however. His hand then drifted toward the lower middle of the board. At this point F2 said, “You should sort of go to the area where he should be going”… 

Even with all this advice, the facilitation failed. As Twachtman-Cullen reports:

I felt increasingly incompetent and responsible for the client’s lack of success in generating intelligible messages. I was at a loss to understand how something that seemed so simple and straightforward could give me so much difficulty. At the same time I was also struck by the awesome amount of pressure on the facilitator to generate messages.

Also revealing is Twachtman-Cullen’s experience facilitating C1. By traditional FC standards, she did not facilitate her at all: C1 “refused all my attempts to facilitate with her.” But Twachtman-Cullen did facilitate in the sense of providing oral prompts while C1 typed: the kind of prompting that happens routinely with more recent variants of FC like the Rapid Prompting Method (RPM) and Spelling to Communicate (S2C). Tellingly, however, Twachtman-Cullen was unaware at the time that she was providing oral prompts. In addition, she was unaware of how much she ignored C1’s repeated attempts, in repeatedly speaking the phrase “with you”, to communicate with her:

It was not until I reviewed the videotaped footage several times that it became clear to me that I was so caught up in the typing that I did not even realize that she may have been requesting either my help or that I take her for a ride when she said “with you.” Neither did I realize until many viewings of the videotape that while I was fashioning her typed message into one thing, she was actually trying to request, both verbally and through typing, something quite different [namely, a request to terminate the session]. Finally—and this is a crucially important aspect of the FC experience—I had no sense at the time of the extent of my “help” (influence?) in her “independent” typing. Nor, in the heat of the FC moment, did I have any sense that I had completely, time and time again, missed C1’s communicative intent.

Twachtman-Cullen adds:

One of the most revealing aspects of this interaction was the effect that my wanting the client to succeed had on the behavior I exhibited.

Far creepier than this creeping pressure to exert influence is the distress that FC often inflicts on its victims when typing doesn’t go as planned. This happened when Twachtman-Cullen asked C1 what she liked best about FC. C1 started typing right after “like best”, missing the rest of the question. The letters she typed, therefore, did not meet F1’s expectations. There ensued several cycles of F1 deleting letters, grabbing C1’s arm, and causing C1 to type out things that C1 didn’t want to say. C1, noticing this, got more and more frustrated. At one point, “she buried her head in her hands and said no in a very agitated manner, repeating it six times in rapid succession.” F1, for his part, made clear his displeasure at what C1, despite his “facilitation”, managed to type. “I’m a little confused”, he said at one point. As the cycle continued, C1 grew increasingly upset, whimpered, put her hand over eyes and ears, and mumbled things like “I don’t know” “No. More please. More please.” (Here Twachtman-Cullen made the reasonable inference that “More please” stood for “No more please”).  F1 continued to prompt her. She said “finished”. He ignored this and continued facilitating her. Eventually she put her head down and said “help me”. As Twachtman-Cullen reports:

The session continued for several more minutes even though there were other instances when the client expressed agitation and frustration. This included the manifestation of mild self-injurious behavior at the end of the session.

If this kind of thing arises while outsiders are observing and taking notes, one can only imagine what happens behind closed doors.

And how does all this accord with the claims—as frequent back then as they are now—that FC is grounded in a special relationship of trust and harmony, or “synchrony”, between facilitator and client? Noting both F1’s disapproval of C1’s verbal and nonverbal communication and C1’s resultant frustration, Twachtman-Cullen remarks:

It is difficult to comprehend how the facilitator’s indifference to the client’s obvious and intentional communicative behavior, especially considering the degree of frustration this client experienced, would be consistent with providing an atmosphere of trust and emotional support. Could it be that the highly touted alleged synchrony between facilitator and client occurs only when the client is performing in the manner that is intended by the facilitator? If so, the following question must be asked: What price does conditional synchrony exact?

A powerful question, and one that, tragically, continues to arise. Most egregiously, it arises in a certain highly acclaimed but ethically challenged movie about autism that came out two years after A Passion to Believe was re-published.

This brings us to one possible concern about A Passion to Believe: that all the data and references date back to the 1990s. The book has, in other words, not been updated since being re-issued by Routledge in 2018. But that doesn’t mean it’s out of date. In fact, little has changed since the 1990s—either in the rationale for this variant of FC, or in the solidity of the evidence against it.

The only updates it would have been nice to see are (1) a look at how touch-based FC continues to this day, as seen in books like Reasonable People and I Have Been Buried Under Years of Dust, and (2) mention of new variants of FC like the Rapid Prompting Method (RPM) and Spelling to Communicate (S2C). In RPM and S2C, instead of moving the person's hand/arm such that particular letters approach their outstretched finger, the facilitator simply moves the letterboard towards the outstretched finger. But the fatal problems remain: baseless redefinitions of autism as the underlying rationale, and, at the practical level, subconscious cuing, facilitator control, and all the attendant psychological harms and lost opportunities.