A few days from now, the University of Northern Iowa will host a conference on "facilitated communcation," a thoroughly debunked practice that harms patients and their families and that has been called unethical by leading medical societies.
For those who haven't heard of it, facilitated communication, or FC, is a method where a person (the "facilitator") sits next to someone and guides their hand over a keyboard. For example, a facilitator will hold the hand of a nonspeaking autistic child and guide her as she types out messages.
The problem is, scientific evidence going back 25 years shows that it doesn't work at all. All of the messages come from the facilitator–who might not even be aware that s/he is doing the actual communicating. Even worse, there are multiple documented instances where FC led to false charges of sexual abuse, invented by the facilitator, that severely damaged families and even led to imprisonment of innocent parents. Nonetheless, FC is still used today, and it is easy to find websites claiming that it can help parents communicate with their autistic children.
The American Speech-Language-Hearing Association has recently written that
"FC is not an effective form of communication and does not provide access to communication... [it] has been associated with significant preventable harms arising through false allegations of sexual abuse and mistreatment. (Boynton, 2012; Chan & Nankervis, 2014; Wombles, 2014)"Others have been even more blunt, writing that "FC is an abuse of human rights." And yet it has not disappeared.
Why do people still practice facilitated communication? Are they even aware that what they're doing is deeply harmful? A compelling case is made in this lengthy expose, published in 2012 by a former facilitator, Janyce Boynton, who admits that she was responsible for "graphic depictions of rape and sexual assault that had no bearing in reality." Her actions led to a family being split apart and the parents being charged with child abuse.
Yet Boynton believed at the time that what she was doing was real–as she puts it, she simply "did not want to believe that FC was a hoax." She also makes it clear that many of the people she learned from sincerely believed that FC was real. Boynton herself was crushed when she realized that she–and not the severely autistic child who had been entrusted to her care–was typing all the messages. As Boynton eventually discovered:
"By the mid-1990s, the scientific community had proved over and over again that it was the facilitator—not the disabled communication partner—who was typing the messages. Every time. Full stop."Ms. Boynton is now leading the effort to try to convince the University of Northern Iowa to cancel its workshop promoting Facilitated Communication. She helped put together a letter, signed by dozens of doctors, scientists, and speech pathologists, urging the dean of the UNI's School of Education not to host the conference.
I wrote to the UNI dean as well, and she forwarded my questions to Christine Ashby, a faculty member at Syracuse University which is co-sponsoring the conference. Prof. Ashby declined to answer my questions, and instead sent me a document that "provides additional information about the method and the research pertaining to its use," as she wrote. I read the document and looked at the references, but I could find nothing that refuted the earlier double-blind studies (or other, more recent studies such as this one) that have shown that FC is ineffective.
The fight against dangerous pseudoscience never ends. As five professors of speech pathology and psychology wrote just a few weeks ago:
"It's time to stop exposing people to the dangers of Facilitated Communication."And yet it is nearly certain that the University of Northern Iowa will proceed with its workshop on June 18-19, where attendees will not only get college credit, but they may emerge with the mistaken belief that they can unlock hidden thoughts in children who are unable to communicate. This can only cause harm.
