From The Atlantic
By James Elliott
July 25, 2016
A technique that claims to help people with the condition express themselves with the help of a "facilitator" was scientifically disproven in the '90s—so why hasn't it disappeared?
For Autism Awareness Month in April, Apple produced a video in which a young teen with autism uses an iPad that dictates what he types. Touching on-screen buttons, he expresses complex thoughts by assembling sentences from icons that represent words.
Speech-assistive technology like this, which used to be prohibitively expensive, is invaluable for the many children and adults with autism who have trouble learning words and grammar, don’t understand social rules during conversations, or struggle to spontaneously use spoken language. But the video has come under some scrutiny—not because of the new technology, but because of the human help he had using it.
In one brief sequence, the boy is shown typing into a device held by a woman, his “communication partner,” who gently pushes the keyboard back against his finger as he types. This pressure, which allegedly helps him to organize his sensory system and motor planning, is a hallmark of Rapid Prompting Method (RPM), what some experts argue is a form of “facilitated communication”—a technique that persists in spite of overwhelming evidence that discredits it.
Such partners—alternatively called “facilitators,” among other terms—are not akin to translators, who merely take on valid means of communication and frame it into another, but are the means of communication itself. Whereas someone who speaks French or American sign language has alternative means of verifying their communication (such as in writing), a person with a condition that can affect communication, such as autism, may lack any other means of verifying that what is being communicated accurately reflects what the person is trying to say.
Not only does this run the very real danger of providing incorrect services and supports to the person, stemming as they will from the facilitator’s judgment and not the person’s, mistaking the source can have real, profound consequences: Families have been torn apart by spurious accusations of abuse, including sexual abuse. Worse, such communication has been used to try to justify the abuse itself.
Facilitated communication—often referred to as FC in the media and in scientific literature—bills itself as a way to allow individuals with autism, intellectual disability, or a condition like cerebral palsy to communicate by means of a “facilitator.” Facilitators provide pressure to the hand, wrist, or arm, guiding the individual to letters, words, or pictures—typically on a keyboard, smartphone, or tablet.
Whereas a prompt is an accepted educational technique to initiate an action (as distinct from “hand-over-hand,” which is used to teach the action itself outside an attempt to communicate), facilitation is typically provided throughout the communication process.
Facilitated communication was in the headlines earlier this year when Anna Stubblefield, a former chair of the philosophy department at Rutgers University in New Jersey and fervent facilitated-communication advocate, was charged and convicted with sexually assaulting a man with severe cerebral palsy while acting as his facilitator.
Stubblefield believed that she was in a deep, loving relationship with a man who could communicate only through her assistance but failed to convince the jury that the “messages” exchanged between them were anything more than creations of her imagination.
Emerging in the 1990s, facilitated communication gained popularity and legitimacy at Syracuse University’s Facilitated Communication Institute, now known as the Institute on Communication and Inclusion, housed within the university’s School of Education. Douglas Biklen, a professor emeritus at Syracuse, was exposed to the technique by Rosemary Crossley, an educator from Australia, where FC had gained traction in the 1970s.
When it first arrived in the United States, FC was seen as a breakthrough, a method of freeing children from the cages of their own bodies and revealing individuals with dynamic intelligence and literary skills, able to share piercing insights into their condition. Once it caught on in the popular imagination, science began its interrogation, and found the evidence for FC’s validity wanting.
By 1994, the American Psychological Association (APA) declared that there was no scientific evidence proving that FC worked—and that it constituted “immediate threats to the individual civil and human rights” of the person being facilitated.
One of the primary concerns, both scientific and ethical, was the issue of “authorship”: whether the thoughts being expressed truly arise from the facilitated, and not the facilitator.
The APA was soon joined by a range of leading professional and scientific organizations, such as the American Speech-Language-Hearing Association and the American Academy of Pediatrics, and by the late ‘90s, facilitated-communication proponents were largely dismissed as faith-healers and charlatans at best, and predators at worst.
(The controversy around the technique was even portrayed in a 1995 episode of the then-popular television procedural Law & Order.)
Today, the developmental-disabilities professional community sees the facilitation-communication debate as settled; the American Association on Intellectual and Developmental Disability doesn’t even feel the need to state a position about it on their website, the organization’s CEO, Margaret Nygren, told me.
By the early 2000s, she said, “there was widespread agreement in the scientific community that the facilitators, rather than the individual with the disability, were the source of communications in FC.”
But, as the Apple video suggests, facilitated communication hasn’t disappeared. The practice retains a dedicated community of followers who have sought to prove its scientific validity as a legitimate speech-therapy technique, often using names such as rapid prompting method or “supported typing,” despite warnings by researchers such as James Todd of Eastern Michigan University and Jason Travers of the University of Kansas.
And FC’s followers have found allies, such as certain staff members at the University of New Hampshire (which only recently transitioned away from the technique), the University of Northern Iowa, the Massachusetts Department of Elementary and Secondary Education, and the Vermont Department of Disabilities, Aging, and Independent Living.
The FC community may even continue to secure taxpayer dollars: In 2012, the federal Department of Education gave the University of New Hampshire and University of Kansas’s Schoolwide Integrated Framework for Transformation (SWIFT) program a $24.5 million grant. The money was earmarked for public and private schools that adopted SWIFT, which includes recommended materials that some allege are almost indistinguishable from FC, despite using terms like “supported typing” that blur the line with validated, prompt-based instruction, and whose staff purportedly share connections with pro-FC organizations.
Public dollars, it appears, are being used to teach vulnerable and disabled children a scientifically unproven means of communication.
The University of Kansas denies that the SWIFT guidelines recommend the use of supported typing. “The assistance that SWIFT provides to its schools and its partners does not include facilitated communication or supported typing, because SWIFT and its leaders believe these practices are not based in scientific evidence,” Andy Hyland, a spokesman for the school, said in a statement. “We do not promote these activities or recommend that they be used. To suggest otherwise is simply untrue.”
Many insist, though, that FC and prompt-based techniques such as SWIFT are hard to disentangle. If so, why has FC persisted?
Janyce Boynton was one of the facilitators caught up in a now-infamous case in which a student she worked with in the early 1990s allegedly communicated that she had been sexually abused. A speech-language clinician, Boynton had been working with developmentally disabled teens in a life-skills class when one of the students she was newly assigned to came with an aide who assisted with life and academic skills—and who was also a facilitator.
Intrigued by what appeared to be an effective new technique for working with a nonverbal student, Boynton learned from the aide and attended a two-day workshop to become a certified facilitator herself. “The [aide] was with [the student] all the time and had been trained, and it seemed to be working,” Boynton said. “I think all of us thought, ‘What harm could it do?’”
As she built a relationship with the student over time using facilitated communication, Boynton felt that authentic words and sentences were emerging. “We were looking for [the student’s] sense of humor and decision-making and so over time we thought we were getting results,” Boynton told me. “Her ability to tell us what was going on in her life seemed to be increasing.”
When the student’s behavior suddenly changed, and she began swearing and hitting, Boynton recalled her training and identified this as a warning sign. She began to wonder whether something was going on at home. “As soon as you get that in your head, something comes out in communications. We started getting questions about whether she’s being touched inappropriately by her father.”
They worried about what would happen if they ignored it, and contacted child-protective services. As a result of her allegations, the student’s father was arrested for sexual abuse and spent 80 days in jail; the student’s mother was also arrested as an accomplice, and both the couple’s children removed from the home.
After the allegations were found unproven, and the case dismissed, Boynton was confronted with what she had communicated to authorities. “When I saw some of the stuff I wrote [alleging sexual abuse by the student’s father],” during the student’s interview with investigators, “I didn’t even realize what I’d written at the time,” Boyton said, describing the communication she had facilitated for the student.
She now believes that FC is a self-fulfilling prophecy, a rationalization to resolve any cognitive dissonance such as what she experienced when participating in the police interrogation. “You don’t remember, you’re disconnected,” said Boynton as she described her thoughts during the investigative interview—an experience that she said draws parallels with the psychological concept of dissociation.
None of the training or materials Boynton had received in her FC certification course discussed the danger of how the facilitator’s goals or desires could influence the process.
“There was an expectation to not doubt the authenticity of the person’s voice,” she said. “We were taught these individuals were so oppressed that we weren’t supposed to doubt their communication; if we doubted FC, we’re doubting the person.”
The expectation of validity, combined with the facilitator’s desire to do good, may be the secret to FC’s longevity, and illustrates the danger it poses. This psychological construction—Boynton likened it to an author creating a dialogue between characters or imagining a conversation with someone you know well—can have disastrous consequences, not just for the nonverbal individual’s own voice, but also for the people around them.
Meanwhile, many advocates of FC continue to have faith in at least some aspects of its methods, and have spent the years since the ‘90s moving forward with attempts at creating replicable results.
Syracuse University’s Institute on Communication and Inclusion (ICI), where facilitated communication was pioneered in the U.S., still exists and works to disseminate new research and best practices. It is currently staffed by doctoral students with backgrounds in disabled-adult services, special education, and literacy education—as well as two trainers who are parents of FC users. ICI’s director, Christine Ashby, a doctor of special education, told me in an email that the ICI’s approach “grew out of the idea that all people are educable. All people have the right to have their voices heard.”
“We try to build a community of practice, building it locally,” said Ashby of the ICI’s efforts. “We’re not a professional body and we can’t oversee trainers once they leave a conference.” Ashby admits that during the period of time when Boynton was trained, “there were a lot of people who were poorly trained and not using best practices.”
John Hussman, who oversees the Hussman Foundation, which funds much of the research at Syracuse’s ICI, and has a son who was educated in part with facilitated communication, made the persistence of the FC community fairly clear to me during an e-mail exchange. “[O]ur efforts are focused on the element of truth between two unfortunate and equally dogmatic falsehoods. One is that all FC is valid. The other is that all FC is invalid.”
Much of the ICI’s work now focuses on the autistic community, promoting techniques like supported typing that seem to be newer iterations of FC. “Autism is a disorder of performance,” Ashby said. “We now recognize that a lot more of autism is about motor planning. ‘Supported typing’ wasn’t just re-branding, it was an attempt to distinguish between what we’re doing and facilitated communication.”
Like supported typing, RPM still requires that individuals be prompted through an indirect touch or verbal direction. Individuals with autism or other cognitive impairments can become very dependent upon prompting, and that dependency is extremely difficult to extinguish.
Reliance upon prompting can be so comprehensive—and so customized for a single individual—that I have seen people with autism completely lose the ability to perform tasks as basic as going to the bathroom without the person on whom they’ve come to rely. Autistic individuals may be particularly sensitive to other “prompts” beyond touch, as they are often capable of “hyper-attention” to sensory and environmental details that most people would not notice.
Todd, the psychology professor at Eastern Michigan University, is one of the foremost scholars on FC in the country and has served as a legal expert in the Stubblefield rape case, among others. He points out in a 2014 paper that FC is not immune to basic scientific scrutiny—for example, a study in which you present information to a facilitated individual without the facilitator being present, and then when the facilitator returns ask the individual what the student saw (an apple, a color, etc.).
If the communication arises from the individual, and FC works, then the correct answer should result. FC has never been able to reliably overcome this test in a controlled environment.
The larger existing body of scientific research also remains firmly tilted against the technique. The May Institute’s National Autism Center, considered to be among the very best resources regarding evidence-based treatment of autism, found in both 2009 and again in 2015 in its National Standards Project that there is “little or no evidence in the scientific literature.” The International Society for Augmentative and Alternative Communication, in its own review of the science around FC, concluded in 2014 that all indications are that authorship stems from the facilitator, and not the facilitated.
Ashby, however, claims otherwise, stating that the ICI has several studies—which she initially offered to forward to me but hasn’t responded to follow-up requests—countering the test cited by Todd on “message-passing” between facilitator and the person. But, she says, “We can’t even get that published … It’s not prestigious, and we are often under professional attack. It’s a challenging position to be in.”
“I would say that much of the initial FC validation research was methodologically flawed—testing people with no prior FC experience, providing very short times for responses, setting up confusing and unfamiliar protocols,” Asby said. “It was evident from those studies that influence is possible and that is very important to recognize ... But I take significant issue with the claim that because influence is possible, all communication is influenced. That is a fallacious argument and inhibits communicative access for people who desperately need it.”
So which is it? Has FC developed into a valid method that pushes individuals toward independent communication, or is it a belief system hopelessly intertwined with the confounding, unconscious psychological biases of the facilitator?
The goals of FC’s new generation of proponents, to push for scientific acceptance of their techniques, presents a clear way forward to prove its validity. But to do so, they must overcome the authorship problem cited by Todd and other scientists, and, most importantly, demonstrate that they understand how communicators depend on prompts and incorporate methods to control for and eliminate that dependency. These things are quantifiable.
The unknowns of autism often move parents and families of autistic individuals in a swirl of powerful guilt, uncertainty, and fear. But that swirl also involves hope—hope that beneath a child’s autistic symptoms is a child yearning to communicate with the world. FC’s offer to fulfill that hope is what gives the practice its power, despite compelling scientific evidence against its ability to deliver.
In practically every case of facilitated communication that I have seen or researched, one of the first things that nonverbal people express through facilitated communication is a profession of love and thanks for the parent’s tireless faith that there was a linguistically intact individual waiting for the proper means of expression.
Facilitators themselves begin from the very assumption that this capability is not only there, but that their facilitation is the means to access not only the person’s communication but also their innate intelligence. There is substantial power behind the image of a child with autism liberated from a cone of perseveration and self-stimulation attending college and expressing complex, cogent sentences.
The very idea that these children lack the ability to communicate is at odds with everything in which I and any educator or professional believes. The very first requirement in teaching such wonderful, complex people is the humility in knowing that even when an approach rewards the educator, it can hurt their charges, or their families, emotionally.
It can be easy to lose site of the goal: independent communication arising from the individuals, and not from a person’s hopes for them.