Janyce Boynton is a Maine collage artist who sells her work through her website and at local shows, but she is also a tireless advocate for science. She would never have predicted that science and skepticism would become such an important part of her life, but something happened to her over twenty years ago that set her on this path.
My first contact with Janyce was probably about ten years ago. I was a psychology professor at a liberal arts college when I got a message from Janyce identifying herself as the “facilitator in the W______1 case” and offering to speak to my class. She must have known that I would understand what that meant, and although I did not follow up with her at the time, it is clear to me now that she was well into her personal mission at that point. It has been a long and, at times, difficult journey.
Janyce Boynton with one of her collages.
In the early 1990s, Janyce was a speech therapist working in Maine. One of the students she worked with was a non-speaking high school girl with autism whom I will call Wendy. An educational technician who also worked with Wendy introduced her to a new communication technique called facilitated communication (FC). The technician had been trained in the method and was using it with Wendy with great success.
As readers of this column will recall, FC is based on the theory that many people with profound language deficits suffer from a physical problem—an inability to produce the sounds for speech or the movements required for writing or typing—but are not cognitively impaired. According to this theory, these individuals can’t get their ideas out of their broken bodies. FC supporters claim this problem can be solved by having another person—a facilitator—hold the student’s hand or arm and guiding it over a keyboard. If the facilitator could just steady the non-speaking person’s hand, the intelligence hidden within could emerge. Facilitated communication spread rapidly, and with the help of their facilitators, many previously non-speaking people began writing poetry and performing at grade level in school.
A facilitator and student demonstrating FC on a tablet. (YouTube screenshot)
Some of Wendy’s teachers were skeptical of the technique, but after getting some training from the educational technician, Janyce gave it a try. The results were remarkable. This student who had never spoken a word was now typing out intelligible sentences and carrying on conversations. Janyce had some initial doubts about her technique and whether she was influencing what Wendy said, but she dealt with that uncertainty by getting formal training in FC at a workshop offered at a local university. She came back from the training feeling more confident that she was doing it right and that the words typed on the keyboard were coming from Wendy.
All of this was fine until one day Janyce was working with Wendy in her office, and Wendy typed out some messages that suggested she had been sexually abused. Janyce found this quite concerning and reported it to Wendy’s special education teacher, who set in motion the school system’s standard protocol for cases of reported sexual abuse. Wendy was interviewed by a police officer and a Department of Human Services (DHS) counselor, with Janyce serving as her facilitator, and in response to more specific questions from the DHS counselor, Wendy typed out very graphic descriptions of sexual abuse.
After this interview, Wendy and her brother were removed from their parents’ home, and an attorney was assigned as guardian ad litem for Wendy. The guardian focused in on the central question: Who is doing the typing? Are the words coming from Janyce or Wendy? The question was relevant because the two were always in physical contact: Janyce was guiding Wendy’s hand. Janyce believed that the words were all coming from Wendy and that she was just there to steady Wendy’s hand, but now that there were accusations of abuse, it was important to be certain.
To answer this question, the guardian brought in Howard Shane, director of the Center for Communication Enhancement and the Autism Language Program at Boston Children's Hospital. With Janyce serving as facilitator, Shane performed a battery of now-familiar double-blind tests used to evaluate FC. In one situation, Wendy was asked to identify pictures of familiar objects. On some trials both Janyce and Wendy saw the same picture, but on other trials, they were shown different pictures. In each case, the answers typed matched the pictures Janyce saw, not what Wendy had seen. In another part of the test, Shane asked Wendy several very simple questions about her everyday life—but questions whose answers were unknown to Janyce (e.g., “What color is your family’s car?”). None of these questions were answered correctly.
Howard Shane demonstrating the double-blind method used to test the validity of communications obtained through facilitated communication. A screenshot from the PBS Frontline program “Prisoners of Silence” (Palfreman 1993; YouTube.com).
The results could not have been clearer. Whenever Janyce did not know the correct answer, the answer given was wrong. Simple double-blind testing showed that Janyce was doing the typing, not Wendy, and as a result, Wendy and her brother were reunited with their parents. Furthermore, the results were so overwhelming that Janyce was also convinced. And so began a very challenging period for her.
Three Difficult Questions
Janyce needed to come to grips with three questions: First, was FC real? Second, if not, then how could she have been so completely fooled? And, finally, why sexual abuse? To her credit, she answered the first question very quickly. Janyce was a trained speech and language therapist, and when she saw the results of the testing, she recognized what it meant. FC was a fraud. In addition, the testing had been a very stressful experience for her. She had never facilitated in a situation like that before, and when she didn’t know the answer to a question Shane was posing, she found herself mentally searching for an answer she thought Wendy might give. She realized there was something wrong with this, and as a result, even before she saw the data, the testing process raised doubts in her mind. After the findings of Shane’s testing were revealed, Janyce stopped using FC and went on to convince the school administration to implement a system-wide prohibition on its use. The administration had not taken a stand on whether FC was valid or not, but at Janyce’s insistence and out of an abundance of caution, they banned the use of facilitated communication in the school system until more was known.
The next two problems took more time to sort out. The sexual abuse aspect was very embarrassing, but in hindsight Janyce had an idea about where it might have come from. In the days prior to the sexual abuse report, Wendy exhibited an increase in violent hitting and scratching. Janyce had never been hit by Wendy or any other student before, but on one occasion Wendy hit her quite hard in the face. She also scratched Janyce, sometimes drawing blood. When a student shows a sudden change in behavior, it is not uncommon for special education staff to hypothesize that something at home is upsetting the child. Of course, in any given case, there are many possible reasons for the change in behavior, but when other explanations don’t come to mind, teaching staff sometimes imagine that circumstances at home are the cause of the problem.
Janyce did not recall consciously thinking about the possibility of sexual abuse in Wendy’s family before the words came out on the letter board, but once the dust had cleared, she realized this might have been the source of the idea. Unconsciously, Janyce had provided an explanation for the change in Wendy’s behavior. Ironically, given further thought, Janyce realized that Wendy’s aggressive behavior was much more likely a sign of resistance to FC. Wendy was telling her that she did not like having her hand held or having Janyce sit so close to her.
The most difficult question was how she could have been fooled by FC. How could she have come to believe that Wendy was the one controlling the typing? After the episode with Wendy was over, Janyce kept in touch with Howard Shane, who gave her copies of published research studies on FC, all of which showed it to be bogus. It was at this point that Janyce recognized an important mistake she made back at the beginning of her FC experience. When she had doubts about FC, rather than look widely for information about it, Janyce had consulted FC advocates and the pro-FC literature. Outside the cult of FC, opinion was very different, but she had not looked for dissenting views. Shane helped her widen her understanding, but there was still the question of how she had been so completely fooled. As another facilitator once said to her, “You mean all this time, I’ve been talking to myself?”
Wendy’s case, as well as other FC-related cases of false sexual abuse allegations, were described in a 1993 PBS Frontline documentary “Prisoners of Silence” (Palfreman 1993). In addition, the film showed a similar double-blind test of FC conducted at the O.D. Heck Developmental Center in Schenectady, New York. The staff of the center had come under the sway of FC and were using it extensively throughout the institution. As in Janyce’s case, double-blind tests showed that not a single correct response was typed when the facilitator did not know the answer. Furthermore, there were interviews with experienced staff members who, like Janyce, were completely fooled into believing their students were doing the typing. They reported being “devastated” by the results of the test—the same word Howard Shane recently used to describe Janyce’s initial reaction to the testing with Wendy.
So, after seeing the film, Janyce knew she was not alone in her confusion, and she went on to read a number of research articles that showed it was quite easy to create credulous facilitators in a laboratory setting. For example, in a study by Burgess and colleagues (1998) college students were told that FC worked, and they received a little training in the technique. Despite this minimal level of exposure, the great majority of students willingly took on the role of facilitator. Eighty percent of them produced correct responses to questions whose answers they knew but that the disabled person they were working with—who, in fact, was a non-disabled actor—did not know. And, yet, these new facilitators expressed the belief that they were not typing the words.
Although it helped to learn about how easily people can be fooled, Janyce continued to feel uneasy about the entire episode with Wendy and her family.
A Personal Journey
Janyce stayed on as a speech pathologist in the same school district for another six years, after which she left to pursue a master’s degree in education. She had originally intended to return to teaching, but by the time she completed her master’s, she wanted to pursue her art. Over the years, she kept in touch with Howard Shane, who provided her with articles about FC and checked in to see how she was doing. In the meantime, reporters called her on occasion, and although she was reluctant to speak to them, she was often persuaded to do so, knowing that they were likely to write about her whether she spoke to them or not. It seemed better to take the opportunity to describe things in her own words. But this also meant that it was difficult to let her FC experience fade into the past. So, over the years, Janyce began to take a number of active measures to both make amends and do what she could to lessen the harm of FC.
First, she made a sincere and very public apology to Wendy’s parents. With the consent of all parties, the apology was filmed for an episode of ABC TV’s 20/20, and although many families might not have been so generous, Wendy’s parents graciously accepted her apology.
Quite a few years later, Shane learned that the journal Evidence-Based Communication Assessment and Intervention had scheduled a special issue on the topic of facilitated communication. Knowing that Janyce was still troubled by her experiences with FC, he suggested she write an account of what had happened to her. Writing the article turned out to be a very positive experience. It helped her sort out her thoughts about what had happened from the vantage point of several years of separation, and as part of the peer-review process, she received helpful criticism from professional reviewers. The result was a remarkably frank description of her case that stands as a unique and very valuable contribution to the literature on FC (Boynton 2012).
Finally, in recent years she has gone on to become a leading activist in the effort to end the use of FC. Despite overwhelming evidence discrediting FC that eventually led to at least nineteen professional, governmental, and advocacy groups throughout the world issuing policy statements against its use (Behavior Analysis Association of Michigan 2018), the supporters of FC have come roaring back to defend it. In addition, they have introduced new forms of FC that are just as pseudoscientific but packaged differently, the most prominent of which is called rapid prompting method (Vyse 2016). Like many of those who have followed the FC saga, Janyce was frustrated by its continued—and even growing—popularity. In response, she helped organize a small band of activists and has become their unofficial leader. She maintains a clearinghouse of professional articles and media coverage about FC, as well as a variety of other resources, and she keeps her eye open for opportunities to expose the bogus nature of FC and prevent the many harms it can cause.
Janyce’s efforts have already borne fruit. As outlined in a previous column, earlier this year the University of Northern Iowa (UNI) sponsored a “Midwest Summer Institute: Inclusion and Communication,” which included instruction in FC. The university also offered college credit for some of the institute’s workshops. In collaboration with her crew of advocates, Janyce drafted a letter objecting to the promotion of a discredited and potentially dangerous technique.The letter was signed by thirty academics and professionals and sent to the administration of the university. In addition, the controversy was covered by the local Cedar Rapids newspaper. Eventually, the UNI Provost responded by saying that he would assemble a committee to evaluate their summer workshops (Vyse 2018). In October, the Provost announced that the committee had reached its conclusion and that the university would “no longer be hosting the facilitated communication conference.”
Science victory: Responding to criticism, the Provost of the University of Northern Iowa announces that UNI will no longer host the Midwest Summer Institute, which featured training in the discredited autism therapy facilitated communication. pic.twitter.com/DnZWvEHySt
— Stuart Vyse (@stuartvyse) October 24, 2018
By removing the University of Northern Iowa’s stamp of approval from an FC workshop, a substantial blow was struck against pseudoscience and in favor of reason. But this is just the beginning. There are a number of other universities and governmental organizations that tacitly or explicitly endorse FC and/or its related techniques, and Janyce and her allies have their eyes on a number of these future targets.
Janyce Boynton, who, along with Wendy’s family, was a victim of FC pseudoscience over twenty years ago, has come full circle from believer to skeptic and from a user of FC to a dedicated advocate for abolishing it. Her perspective is completely unique. No one else has taken her unusual journey. But she has emerged as an important figure in the cause for science and reason in the field of autism treatment.
Howard Shane has known Janyce since those early days when they were brought together by Wendy’s case. Asked to comment on her career, he wrote:
It is truly courageous, if not inspirational, that Janyce was able to immediately recognize and accept that she had been seduced into the role of facilitator, but has worked tirelessly for decades to make amends for that unconscious, involuntary misstep. As a result, she has quietly assumed a leadership role of a small army of academics and advocates in their unremitting struggle to mitigate the negative effects of FC. —Howard Shane, PhD, Children’s Hospital Boston and Harvard Medical School
I can think of no one who has had a more unusual path to science advocacy than Janyce Boynton, but the nature of her journey is part of what makes her voice so powerful. This collage artist from Maine speaks with a kind of authority that none of her academic and professional colleagues can match, and what she has chosen to do with her voice is, indeed, courageous and inspirational.
“Orange Blooms” (2018) by Janyce Boynton.
References
- Behavior Analysis Association of Michigan. 2018. Resolutions and Statements by Scientific, Professional, Medical, Governmental, and Support Organizations Against the Use of Facilitated Communication. Available online at http://www.baam.emich.edu/baam-fc-resolutions-compilation.html.
- Boynton, Janyce. 2012. Facilitated communication—what harm it can do: Confessions of a former facilitator. Evidence-Based Communication Assessment and Intervention 6(1): 3–13. Available online at https://doi.org/10.1080/17489539.2012.674680.
- Burgess, Cheryl A., Irving Kirsch, Howard Shane, et al. 1998. Facilitated communication as an ideomotor response. Psychological Science 9(1): 71–74. Available online at https://doi.org/10.1111/1467-9280.00013.
- Palfreman, J. 1993. Prisoners of silence (J. Palfreman, Director). In D. Fanning (Executive Producer), Frontline. Boston: Public Broadcasting Service. Available online at https://youtu.be/5sO9LyXuOQY.
- Vyse, Stuart. 2018. Autism wars: Science strikes back. CSI Online (August 7). Available online at https://www.csicop.org/specialarticles/show/autism_wars_science_strikes_back; accessed November 12, 2018.
- Vyse, Stuart. 2016. Syracuse, Apple, and autism pseudoscience. CSI Online (April 28). Available online at https://www.csicop.org/specialarticles/show/syracuse_apple_and_autism_pseudoscience; accessed November 12, 2018.
Citation
1 I have not used the actual names of the student and her family.