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Facilitated communication is supposed to help non-verbal people with disabilities communicate when they otherwise have not been able to. In a typical use of FC, the “facilitator” provides physical support for the “user,” sometimes by holding their wrist or other body part, as they point to a keyboard or other device.

FC’s main issue, however, according to numerous researchers and decades of studies, is that what is ultimately typed are not the thoughts of the person pointing. The facilitator, likely unintentionally, is the one controlling the message, said Ralf Schlosser, a professor of communication sciences and disorders at Northeastern University.

Despite research dubbing facilitated communication as pseudoscientific dating as far back as 1995 and a Daily Orange investigation into FC in 2016, Syracuse University continues to provide training and proliferate information on FC through the Center on Disability and Inclusion’s Inclusion and Communication Initiatives. James Todd, a professor of psychology at Eastern Michigan University, called the intervention’s continued existence at SU a “major embarrassment.”

“The ethical thing to do for the folks who are promoting this is to sit down and go, ‘We failed. We’ve been promoting something for decades that doesn’t work. We need to stop drawing in vulnerable parents with vulnerable children,’” Todd said. “Because no ethical clinician would foist pseudoscience on that kind of population.”

Schlosser authored two systematic reviews of facilitated communication — one published in 2014 and another in 2018. Results of the 2014 review indicated “unequivocal evidence for facilitator control” and that “FC is a technique that has no validity.”

In another review, Schlosser examined a study from Finland that had 11 children who use FC complete a series of tasks like “object naming” and “reading.” For “object naming,” when the facilitator working with the students could physically see the object, the students collectively went 33-for-36, answering 92% of the questions correctly. When the facilitator could not see the object, the success rate fell to 2%.

The disconnect between the results of numerous studies and some facilitators legitimately believing they are not authoring what is spelled out is likely due to the ideomotor effect, said Jason Travers, a professor of special education and applied behavior analysis at Temple University.

The effect, which is also used to explain how Ouija boards work, is the tendency of people’s bodies to behave inconsistently with mental intention or without attention and mental effort, Travers said.

Since 2020, SU’s ICI has hosted eight workshops on facilitated communication for potential facilitators. The two-day workshop, according to its event page on SU’s community calendar, “provides the opportunity to learn the techniques necessary to be a facilitator.” While the event page refers to the practice as “Typing to Communicate,” this phrase is used synonymously with facilitated communication on the ICI’s website.

Along with the event itself, ICI staff work with participants to create a plan “for continued support” after the workshop, according to the calendar page.

It costs $100 to attend the virtual workshop, though there is no additional cost for a user to work with a paying facilitator during the sessions. Outside of scheduled training, the ICI also offers practice rooms with technology and “on hand” staff for $20 per hour-long session. The next workshop is scheduled for March 25.

Katharine Beals, an adjunct professor in Drexel University’s Autism Program, said that while she sees charging money to learn FC as “unethical,” she has become jaded to situations similar to SU’s.

“Nothing surprises me about the power of wishful thinking over evidence and also the behavior of people who want to sell something,” Beals said. “Unfortunately, I think this has become a very common practice in this country.”

Schlosser, having similar concerns, said it is unethical to act as if FC’s validity is still up for debate.

“It is not,” Schlosser said. “It is clear who the author is and it’s definitely not ethical to continue.”

The D.O. sent a series of questions to the ICI ranging from the content of its workshops to how SU works to ensure that what’s being communicated through FC is from the user.

The ICI did not answer The D.O.’s questions, instead opting to send a comment stating that the university is committed to diversity, inclusion and accessibility and that it is proud of “its long history of supporting teaching, research, and other scholarly activities that advance, support, and align with these core values.”

“The ICI’s commitment to communication and inclusion for individuals so often at risk for marginalization and exclusion is an issue of civil and human rights and very much in line with the mission of Syracuse University and the School of Education,” it wrote. “The ICI’s work is guided by standards of best practice and our research has undergone rigorous peer review and is held to the same high standards of all scholarly research.”

The university itself did not respond to a request for comment on whether it endorsed the practice and proliferation of facilitated communication at SU.

Speaking to The D.O. in 2016 regarding the practice of facilitated communication, Howard Shane, now the director of Boston Children’s Hospital’s Autism Language Program, said the university should be ashamed.

“They’ve never asked the fundamental question: Is this real?” Shane then told The D.O.

Neither Todd, Schlosser nor Travers blamed parents for their interest in FC.

“Parents care deeply about their children,” Travers said. “They want to be able to communicate with their children. They want to understand the thoughts and needs and feelings of their children.”

While Todd believes parents should be vigilant about their children, he said parents are not in a good position to discern the legitimate from the pseudoscientific, especially when the information is coming from a supposed expert working out of a major university such as SU.

Schlosser said professionals need to be held to a higher standard, abiding by their professional organization’s code of ethics no matter the field.

“If they don’t follow what’s evidence-based, then we’re in trouble,” Schlosser said.

One evidence-based tool for non-verbal people — and anyone having trouble with speech or language — is augmentative and alternative communication, or options for communicating outside of speaking. According to the American Speech-Language-Hearing Association, AAC options can range from writing and pointing at photos to more high-tech forms like using an iPad or a computer with a “voice.”

In the first sentence of the ICI’s page on “Typing to Communicate,” the group states that facilitated communication is a form of AAC. Schlosser — who, according to Boston Children’s Hospital, has “published extensively” on AAC — disagreed with the ICI’s claim.

“They like to think that they’re under our umbrella, but we don’t think they are because the message is not produced independently,” Schlosser said.

Travers agreed, saying facilitated communication was “unequivocally” not a type of AAC.

Outside of authorship and claims that facilitated communication is AAC, Travers also took issue with some of the assumptions necessary for FC to, in theory, operate.

“One foundational assumption of facilitated communication is that the person is fully literate even though they’ve never received any form of formal literacy instruction,” Travers said. “Typically developing children require years of daily instruction for hours at a time to acquire literacy skills. And even then, many, many children continue to struggle with literacy.”

The program has also received criticism from within the university. Kathy Vander Werff, the chair of the Communication Sciences and Disorders department, said the program has had a statement separating itself from facilitated communication for “a number of years.”

In an updated April 2023 statement, the CSD department wrote that it supported the use of “evidence-based treatment approaches for (AAC)” and that, specifically, the program does not advocate for approaches such as FC where “there is ambiguity regarding whether the client or a ‘facilitator’ is the source of a message.”

In an email to The D.O., Vander Werff wrote that the CSD department “strongly opposes” the use of facilitated communication. She also wrote that the CSD program stands by the position of ASHA, which believes FC lacks validity, in that FC “fails to represent the individual’s true communication” and that it “poses significant risks.”

“We are aligned with ASHA’s stance and the ethical obligation to advocate for empirically supported communication interventions that genuinely enhance independence and authentic communication for individuals with disabilities,” Vander Werff wrote.

ASHA highlights the potential harms that can arise from FC, such as hindering or delaying “access to appropriate services and effective forms of intervention, including (AAC).” ASHA’s position also states that FC can result in false allegations of sexual abuse and “other forms of maltreatment.”

One of FC’s most high-profile controversies is what The New York Times Magazine called “The Strange Case of Anna Stubblefield.” Stubblefield was a tenured professor of ethics at Rutgers University and a facilitator for Derrick Johnson, a non-verbal adult with cerebral palsy. The state of New Jersey, according to journalist Daniel Engber, declared that Johnson had the “mental capacity of a toddler.”

In 2011, despite her role as a facilitator, Stubblefield told Johnson’s family that the two were in love. In 2015, she was found guilty of two counts of first-degree aggravated sexual assault.

Due to an appellate court ruling that Stubblefield did not get a fair trial, her conviction was overturned in 2017. In 2018, a judge ruled that she would not have to go back to prison after she made a deal with prosecutors to plead guilty to third-degree aggravated criminal sexual contact.

Despite research against the use of FC and high-profile abuse allegations, the ICI has continued to promote the practice outside of its workshops. The program’s research statement reads that “despite the diverse types of research in which individuals have successfully demonstrated authorship, controversy over the method persists.”

Travers took issue with the idea that there are “diverse types of research” demonstrating authorship, saying he had not seen any research where a person independently authored what was being attributed to them. In terms of “controversy,” he compared FC to global warming.

“There is no scientific controversy at all about facilitated communication,” he said. “There are individuals who refuse to accept … evidence or have opinions that are diametrically opposed to what the evidence says.”

Travers said that oftentimes people view FC as a “historical lesson” in the dangers of confirmation bias and pseudoscience. But, Travers said, facilitated communication is not something solely found in the past.

“It is not a history lesson,” he said. “This is an ongoing problem. It’s dangerous, it’s harmful and I offer my strongest recommendation to avoid the technique.”

Published on February 29, 2024 at 2:46 am

Contact Kyle: kschouin@syr.edu | @Kyle_Chouinard