Reaction to a 1994 Article I Wrote about my experiences with FC
This blog post is a continuation of a series sparked by a reader who asked: How has FC changed since the early 1990s? I’m exploring topics raised in the 1993 documentary Prisoners of Silence before moving on to the 2023 film Spellers (see Katharine’s review here). My intention, when I started the series, was to do a side-by-side comparison of the two films, but, as I developed the themes from Prisoners of Silence, I thought it was better to tackle each film separately. I will circle back around to discuss Spellers in a future blog post.
The student looks at the ceiling while the facilitator keeps constant eye contact with the keyboard. Founder Douglas Biklen looks on. (Prisoners of Silence, 1993)
Most people familiar with our website know that I was a former facilitator. I was involved with the Wheaton case featured on Prisoners of Silence. And while doing some research for this series, I came across a short article I’d written in 1994 for the International Association for the Right to Effective Treatment (IARET) newsletter. I remember writing the article but, until I reread it a few weeks ago, had forgotten some of the details. I thought it would be worth the slight departure to discuss it.
If I remember correctly, I was asked to write the article by some parents who’d heard about me—most likely from Prisoners of Silence, or perhaps from a 20/20 interview I did with Hugh Downs in the spring of 1994. I was, and, as far as I know, still am one of the few former facilitators who’ve publicly spoken out against FC. I owe a debt of gratitude to the facilitators at the O.D. Heck Center who paved the way for me to do so. They’d been caught up in the illusion of FC just as I had and it made a big impression on me that they 1) had the courage to test FC authorship; 2) had the integrity to accept the test results when they became aware of them; and 3) stopped using FC based on evidence that definitively showed facilitator influence and control of letter selection.
As I mention in the article, in 1994 I was still struggling to understand “how the use of this seemingly harmless technique could have caused so much pain to so many people.” Reading it again brought up some emotions for me, but I think it’s important to talk about what happened so, hopefully, people thinking about becoming facilitators won’t make the same mistakes I did.
One of Syracuse University’s “master trainers,” Annegret Shubert, talks with an individual being subjected to FC while his eyes are closed. The facilitator and Shubert maintain constant eye contact with the letter board. (Prisoners of Silence, 1993)
In sticking to the theme of “how has FC changed?,” I thought I’d compare my 1994 pro-FC mindset with my 2024 skeptical mindset:
1994: There were two other facilitators besides me getting similar FC-generated messages, so the content (any content—not just the “disclosures” of abuse) must be true.
2024: Facilitators, particularly those working with the same individuals, often share information without realizing it. These common ideas about their client or loved one’s likes, dislikes, experiences are then revealed during FC sessions (sometimes days, weeks, or months after the initial information was shared). Often tropes from FC literature show up in spelling sessions across multiple facilitators as well (e.g., FCed individuals proclaiming via FC, that they “felt like a bird freed from a cage” when “spelling” for the first time). The use of multiple facilitators does not guarantee the veracity of FC-generated messages.
1994: My student did not always look directly at the letter board during letter selection. I was told by first-generation facilitators and workshop leaders Alan Kurtz and William Ashe that they “believed their clients had memorized the board’s layout” and, therefore, did not always need to look at it.
2024: Individuals cannot accurately select letters using a one-finger, hunt-and-peck method without looking directly at the keyboard/letter board. Central vision, not peripheral vision, is required for discerning letters on a keyboard/letter board. Facilitators almost always have their eyes focused directly on the board while the individuals being subjected to FC/S2C/RPM frequently have their eyes closed and/or look away from the “spelling” activity. Even if an FCed individual looks at the letter board some or all the time, this behavior does not guarantee that the person comprehends what is being spelled on their behalf.
1994: I interpreted the child’s gradual cooperation with FC (e.g. extending her hand to me when I sat beside her with the board) as an indication that the technique was “working.”
2024: FC/S2C/RPM works through repetition and cueing by the facilitator. This is behavior modification and reinforcement of the pointing activity and has very little to do with the acquisition of language and literacy skills. Essentially, I’d taught my student how to point on cue. The more compliant she became, the more I thought FC was “working.”
1994: In the early stages of FC, the guidelines suggest practicing the technique using picture identification, fill-in-the blank, or multiple choice activities. As “spellers” become more at ease with the activities, they can move on to spelling words and phrases, which then leads to writing sentences in structured activities and/or open-ended conversation. This progression from spelling at the word level, then to phrases and sentences means that student is spelling out his/her own thoughts. When FC “works,” it “feels” like a real conversation.
2024: Facilitators always know the answers during initial FC/S2C/RPM training (e.g., identifying pictures, fill-in-the-blank, multiple choice). None of the responses are “independently” produced by the individual being subject to FC. Testing for comprehension and/or for authorship goes against FC guidelines and practices. Fluency (e.g., pointing on cue) comes from practice and, to a facilitator, it “feels” like FC is “working” when the FCed individual does not resist the activity. Unexpected, shocking or “cheeky” responses are taken as proof the messages are spontaneous and free from facilitator control, but this belief that FC-generated messages are “independent” has not held up when tested under reliably controlled conditions. Although researchers believe most facilitators are well-meaning and, largely unaware of the extent to which they control FC-generated messages, facilitators can and do fabricate responses while attributing those response to their loved ones or clients.
FC founder Rosemary Crossley facilitates with someone who is a coma. (Prisoners of Silence, 1993)
1994: Expressions of anger and frustration, as well as disclosures of past or present abuses is a common theme with individuals who are using FC for the first time.
2024: While all disclosures of abuse should be taken seriously, FC-generated allegations of abuse need to be treated differently than allegations of abuse that are expressed using independent forms of communication (including sign language, writing or typing, evidence-based forms of AAC, or spoken words). The first step in an FC-generated allegation of abuse case should be to test for authorship under reliably controlled conditions. I keep harping on this point because testing that “blinds” facilitators from test protocols is the only way to rule in or rule out facilitator influence and control. Since 1994, falsely accused people have been jailed for days, weeks, and months only to learn later, through appropriate evidence-based speech/language evaluations, that their son or daughter could not have authored the messages (e.g., they don’t have letter-sound recognition, they cannot spell and/or the content of the FC-generated messages contained false or fabricated information).
1994: Critics of FC are against individuals with disabilities, jealous of facilitators, and want the authorship tests to fail (presumably because facilitators discovered a revolutionary new approach to treating individuals with autism before they did).
2024: Critics and researchers of FC initially responded to concerns about unexpected literacy skills, facilitator cueing, and prompt dependency by conducting tests that involved hundreds of facilitator-client pairs. These tests, overwhelmingly, demonstrated that not only were facilitators influencing letter selection (often through inadvertent cueing), but they were, in fact, controlling letter selection (e.g., “correct” answers during the testing were based on information provided only to the facilitator and not information provided only to the individuals being subjected to FC). The high number of false allegations of abuse cases in the US in the early 1990s sparked much of this research, although not all reliably controlled tests involved allegations of abuse.
Since the 1980s (in Australia first, then the U.S.), critics or skeptics of FC/S2C/RPM have called for proponents to back up their claims of independent communication with reliably controlled tests, but proponents have failed to produce this evidence, insisting that FC works because people using FC say it works. And though anecdotes and testimonials can be valuable at the start of scientific inquiry into a phenomenon such as FC, anecdotes and testimonials are not the right tools for determining authorship. The problem with FC (in any of its forms) is not the high or low tech that’s paired with the facilitation (e.g., laminated letter boards, stencils, computer keyboards), but with facilitator interference (however inadvertent) caused by physical, visual, or auditory cueing during letter selection. Critics of FC want individuals with disabilities to succeed by having access to legitimate, evidence-based techniques, methods, and equipment in whatever form best suits the person’s needs. But critics also want to rule out facilitator control in FC/S2C/RPM. Dependency on a facilitator (whether the facilitator touches the person or not) is not independent communication. I’m reasonably certain that if proponents could provide reliable evidence that facilitators were not controlling FC-generated messages (which, to date, they’ve failed to do), critics of the technique would embrace it—at least in those specific instances.
In closing, I find it discouraging that in 2024 parents, family members, caregivers, educators, and other professionals continue to be drawn into the FC belief system despite all that is known about the flaws in the technique. But I also understand how emotion can override people’s ability to be objective about FC/S2C/RPM when it feels like it’s working. Some days, it feels like no one has learned from the painful experiences of the O.D. Heck facilitators…or me…or the hundreds of facilitators that have participated in controlled testing.
And, as I write this I’m reminded of a couple more differences between 1994 and now:
First, my student (Betsy’s) parents were much kinder to me than current-day proponents are when responding to my blog posts or videos. Even though my actions caused them (Betsy’s parents) harm, they understood how I could have gotten caught up in the illusion. They, too, had wanted FC to “work.” They were aware that I had stopped using FC (and gotten the school system to stop using it as well) and graciously accepted my apology when I offered it. I think facilitators, caught up with FC, find it hard to admit that they were/are wrong to practice a discredited technique, but, in my experience an apology goes a long way in starting the healing process.
Secondly, I’ve been “accused” in recent comments by proponents of FC/S2C/RPM of not being able to change my mind when presented with “evidence” that the technique “works.”
Two things about that:
1) proponents, to date, have only offered up anecdotes, testimonials, and poorly designed studies as “proof” that FC works. They want people to believe that FC works because people being subjected to it say it works. Sadly, as much as I understand that they believe what they are saying about FC is true, anecdotes, testimonials, or uncontrolled studies (e.g., studies or data collecting methods that are not designed to rule out facilitator control) are not evidence, and
2) I did change my mind about FC—only not in the direction proponents wanted. This transition from believer to skeptic was not easy, but once I started understanding that FC does not (and cannot) work as an independent form of communication (not for me, not for anybody), I could no longer ignore that fact. I suppose, in theory, I could be convinced to go back in the other direction, but the evidence—real evidence from reliably controlled studies that definitively rules out facilitator control—would have to be robust and clearcut.
Note: I was going to turn my attention to the movie Spellers next to see how facilitator mindset and behaviors may (or may not) have changed since the early 1990s, but we’re getting reports of false allegations of abuse cases being brought against family members of individuals being subjected to FC/S2C/RPM. My next blog post will discuss the issue of FC and abuse allegations further.
References and Recommended Reading:
Controlled Studies
Systematic Reviews
Opposition Statements
Boynton, J. (2012). Facilitated Communication—what harm it can do: Confessions of a former facilitator. Evidence-Based Communication Assessment and Intervention, 6:1, 3-13. DOI: 10.1080/17489539.2012.674680
Geschke, Norman. (1993, May 10). Report on the Investigation of a Complaint of Unjust Dismissal Because of Allegations Made by Facilitated Communication. Melbourne: L.V. North, Government Printer.
Heinrichs, P. (1992, February 16). Suffering at the Hands of the Protectors. The Sunday Morning Herald.
Heinrichs, P. (1992, February 16). State 'tortured' family – 'tragic'. Sunday Age (Melbourne, Australia) Late Edition, pp. 1
Heinrichs, P. (1992, February 23). 'Tortured' family may call for probe on facilitated evidence. Sunday Age, Melbourne, Australia, Late Edition, pp. 8
Heinrichs, P. (1992, February 23). More families take on CSV 'zealots'. Sunday Age, Melbourne, Australia, Late Edition, pp. 7
Heinrichs, P. (1992, April 12). Taxpayers will foot bill for 'Carla' case. Sunday Age, Melbourne, Australia, Late Edition, pp. 11
Heinrichs, P. (1992, May 17). US courts to rule on disability method. Sunday Age, Melbourne, Australia, Late Edition, pp. 9
Heinrichs, P. (1992, May 31). 'Carla' case prompts overhaul of system. Sunday Age, Melbourne, Australia, Late Edition, pp. 10
Heinrichs, P. (1992, September 6). New ordeal for 'Carla' family. Sunday Age, Melbourne, Australia, Late Edition, pp. 7
Heinrichs, P. (1992, September 13). Carla payment hope. Sunday Age, Melbourne, Australia, Late Edition, pp. 8
Heinrichs, P. US courts reject facilitated communication. Sunday Age, Melbourne, Australia, Late Edition, pp. 7
Heinrichs, P. (1993, January 17). 'Carla' cost may force family to sell home. Sunday Age, Melbourne, Australia, Late Edition, pp. 6
Mostert, M. (2012). Facilitated Communication: The empirical imperative to prevent further professional malpractice. Evidence-Based Communication Assessment and Intervention, 6 (1), 1-10. DOI: 10.1080/17489539.2012.693840
Palfreman, J. (2012) The dark legacy of FC. Evidence-Based Communication Assessment and Intervention, 6 (1), 14-17. DOI: 10.1080/17489539.2012.688343
Sigafoos, J. and Schlosser, R. (2012) An experiential account of facilitated communication. Evidence-Based Communication Assessment and Intervention, 6 (1), 1-2. DOI: 10.1080/17489539.2012.710992
Todd , J.T. (2012) The moral obligation to be empirical: Comments on Boynton's “Facilitated Communication—what harm it can do: Confessions of a former facilitator”. Evidence-Based Communication Assessment and Intervention, 6 (1), 36-57. DOI: 10.1080/17489539.2012.704738
Von Tetzchner, S. (2012) Understanding facilitated communication: Lessons from a former facilitator—Comments on Boynton. Evidence-Based Communication Assessment and Intervention, 6 (1), 28-35. DOI: 10.1080/17489539.2012.699729
Vyse, S. (2018). An Artist with a Science-Based Mission. Skeptical Inquirer.
Blog posts
From Eye Tracking to EEGs—anything but a simple message-passing test
Peripheral Vision: Perfect for detecting facilitator cues
Rationalizations abound: Stopping just shy of knowing
Response to reader question: Has FC changed since the early 1990s - Part 1
Response to reader question: Has FC changed since the early 1990s - Part 2
Some clarifications about message passing research for FC and its variants