In the field of autism treatment, the forces for science and evidence have won a few battles, and lost a few. Unfortunately, some of the most recent victories have been on the side of pseudoscientific and fad therapies, but a new army of researchers, practitioners, and advocates is fighting back.
Twenty years ago, it looked like facilitated communication (FC), a popular pseudoscientific treatment for autism, was dead. Proponents had suggested that many people with autism were trapped inside broken bodies. Autism was not a cognitive problem but a physical one. Inside these non-speaking people were intelligent, expressive minds, and if someone—a facilitator—just steadied their hands over a keyboard, FC could unlock the thoughts and feelings of the person within. Suddenly, with the help of their facilitators, people who were previously unable to speak were writing novels and poems and going off to college. The promise of FC was so miraculous that it spread like wildfire.
Full hand-over-hand facilitated communication, sometimes called supported typing. (Source: YouTube)
But, in the early 1990s, the first empirical tests of the technique began to appear, and the results were devastating. In virtually every case, controlled studies revealed that the facilitator—the autistic person’s helper—was doing the typing, not the person with autism. It was a Ouija board-like phenomenon. The facilitators appeared to be entirely unaware that they were the authors of the words on the computer screen.
This research was a substantial blow to the proponents of FC, and a 1993 PBS Frontline episode, “Prisoners of Silence,” was particularly effective in discrediting the technique. Major professional organizations, including the American Psychological Association, the American Academy of Pediatrics, American Academy of Child and Adolescent Psychiatry, and the American Speech-Language-Hearing Association issued policy statements against the use of FC, and teachers and therapists went back to using more validated methods of educating people with autism. So, by the mid-1990s, it looked like the FC controversy was over, and science had won. Unfortunately, the story did not end there.
As readers of this column know, FC has surged back, and the autism wars have resumed on a number of new fronts. First, the pro-FC crowd criticized and denied the research. Syracuse University professor of education Douglas Biklen (2005), who is the primary promoter of FC in the United States, claimed the research methods used to evaluate FC were not suited to the particular needs of people with autism and had caused test anxiety. Many parents continued to believe their children were articulate writers whose mouths, hands, and arms did not work properly. Pro-FC researchers using less rigorous methods appeared to show some evidence of independent typing in a few individual students, promoting belief in the technique (Mostert 2010).
Second, new variations of FC were introduced that looked different but shared the same problems. The most popular of these new techniques is Rapid Prompting Method (RPM) developed by Soma Mukhopadhyay (2013). In this case, instead of hand-over-hand guidance on a keyboard, the person with autism points to a letter board, and a teacher or assistant reports the words tapped out. RPM is different from FC, but it has the same potential for unconscious prompting because the letter board is always held in the air by the assistant. As long as the method of communication involves the active participation of another person, the potential for unconscious guidance remains. Perhaps having learned a lesson from the FC episode of the 1990s, the proponents of RPM have avoided participating in research studies that might test its validity, and its popularity has grown. Furthermore, the original, thoroughly discredited version of FC continued to be promoted by a number of universities and professionals.
A boy and his teacher using rapid prompting method. (Source: YouTube.)
For those who lost track of the FC story back in the 1990s, the resurgence of pseudoscience was a surprise. Twenty years earlier, science had spoken, and that should have been that. But the promise of uncovering an intelligent, articulate child was just too appealing, and as a result, for some parents and professionals, FC became a system of belief.
Science Strikes Back
Although many of the recent battles have been won by the proponents of FC, RPM, and other related pseudoscientific therapies, in the years since the 1990s, the scientific viewpoint has scored some victories, particularly in the courtroom. Some of the earliest challenges to FC came when parents or others were falsely accused of sexual abuse through FC. Typically, a child with autism would type out a message describing acts of sexual abuse allegedly committed by a parent or someone else. When these cases went to trial, an essential question was, who was writing the abuse claims, the child with autism or the facilitator? In several cases, a simple double-blind test was able to show that the facilitator was the author of the abuse claims, not the person with autism. After these tests were conducted, defendants were usually acquitted or the charges were dropped.
Unfortunately, these victories came at a heavy cost, because the courts move slowly and people’s lives can be damaged in the process. As recently as spring of 2018, a Hialeah, Florida, man was arrested and held in jail for thirty-five days while his case progressed. His was eventually released without any charges filed, but in addition to his incarceration, he had to endure the humiliation of having his picture, complete with prisoner’s orange uniform, published in the Miami Herald—despite having done nothing wrong. No picture of the teacher who authored the false claims appeared in the paper. If this is a victory for science, it is an unsatisfying one.
Another development on the side of science has been the emergence of some very good writing on the topic. Much of this has come from national-level science journalists, including Slate’s David Auerbach (“Facilitated Communication is a Cult That Will Not Die”), Forbes’ Steven Salzberg (“Facilitated Communication Has Been Called An Abuse Of Human Rights. Why Is It Still Around?”), and Kavin Senapathy, who writes both for Forbes and here at Skeptical Inquirer (“On Unsubstantiated Yet Prevalent Therapeutic Interventions for Autism [Part II]”). In addition, Daniel Engber has been the leading reporter on the case of Anna Stubblefield, the Rutgers University philosophy professor who used FC to gain consent for a sexual relationship with a nonverbal man with cerebral palsy. Her first conviction and sentence of twelve years in prison for sexual abuse was thrown out on appeal (due to the judge’s exclusion of some evidence in the first trial), but after serving less than two years of her sentence, Stubblefield avoided a second trial by pleading guilty to third-degree sexual assault, for which she was sentenced to time-served and fifteen years’ probation (Napoliello 2018). Engberg has covered this case at great length for both Slate and the New York Times. Finally, Thomas E. Heizen, Scott O. Lilienfeld, and Susan A. Nolan (2015) have published a wonderful little book called The Horse That Won’t Go Away: Clever Hans, Facilitated Communication, and the Need for Clear Thinking.
True Voices
Despite these few glimmers of light on the side of science and reason, the current state of the conflict appears to favor the forces of pseudoscience. RPM continues to spread, and it has been aided by a relatively new autism advocacy group, the Autism Self-Advocacy Network (ASAN), that frames people with autism as a minority whose rights to communication have not been respected. In the view of ASAN, access to RPM is part of the right to communication, and the organization advocates for its use. For example, having published a policy statement about FC back in 1995, the American Hearing-Speech-Language Association (ASHA) recently posted a draft policy on RPM that includes a detailed comparison of RPM and FC. The main nugget of the policy is this statement:
It is the position of the American Speech-Language-Hearing Association (ASHA) that use of the Rapid Prompting Method (RPM) is not recommended. Furthermore, information obtained through the use of RPM should not be considered as the voice of the person with a disability.
The ASAN advocacy group has issued a statement opposing this policy (“ASAN Letter to ASHA On The Right To Communicate”) claiming that the ASHA’s “blanket statement that specific forms of communication are per se inauthentic robs us of the right to communicate.”
This is not ASAN’s first statement promoting RPM. In March, 2016, ASAN filed a complaint with the U.S. Department of Justice in support of students in the Arlington (Virginia) Public Schools who were denied the use of RPM. RPM was not mentioned by name, but the complaint states that the students in question communicate best by “spelling words by pointing to letters on a letter-board held by a trained supporter.”
Recognizing that the war was not yet won, a group of science-minded advocates, researchers, and professionals have launched a new effort. They call themselves “True Voices,” and they are going on the offensive. Their first target was the University of Northern Iowa (UNI), which, in June of this year, sponsored the “Midwest Summer Institute: Inclusion and Communication,” cosponsored by the Syracuse University Institute for Communication and Inclusion, which was formerly known as Facilitated Communication Institute. The conference schedule (which can be found here) included a session called “Intro to Facilitated Communication Training,” and offered college credit from the University of Northern Iowa to attendees. First, in the weeks before the UNI institute, five members of the True Voices group wrote an article in The Conversation that dramatically highlighted the kind of damage that can—and has—been done by FC. Next the group drafted a “Letter of Concern” about the UNI institute, signed by over thirty professionals and academics, and sent it to several officials at the university.
Here is the letter a group of more than 30 professors, speech pathologists and other professionals sent to the dean of the University of Northern Iowa’s College of Education, urging UNI to cancel the conference:
<a href="https://t.co/cCSHETCdPb">pic.twitter.com/cCSHETCdPb</a></p>— Jordan Muller (@jordanmuller18) <a href="https://twitter.com/jordanmuller18/status/1008546611365138437?ref_src=twsrc%5Etfw">June 18, 2018</a></blockquote>
<script async src="https://platform.twitter.com/widgets.js" charset="utf-8"></script>
Attacking public institutions is an excellent strategy. Universities are supposed to be places of enlightenment and reason, and where public funds are involved, the promotion of discredited ideas is particularly controversial. Furthermore, attacking universities that lend credence to FC has proved to be an effective approach in the past. In May of 2015, I wrote article on FC in which I mentioned that the University of New Hampshire Institute on Disability (IOD) regularly sponsored an “FC skill builders” group. Seven months later, I was contacted by the director of the institute who told me he had read my article and wanted me to know that, after a lengthy review process, the IOD had decided to cease all activities related to FC. I added an update about this development to the archived web version of the article.
It would be a mistake to think my article caused the change at IOD. I am sure they received criticism from a number of fronts. But the fact that the director contacted me suggests that he was interested in correcting the public record.
The True Voices effort at UNI has also begun to produce results. First, the episode provoked a flurry of bad publicity for the university. The previously mentioned Forbes article by Steven Salzberg was released the same week as the Midwest Summer Institute and mentioned it directly, asking why a university would offer college credit for instruction in a thoroughly discredited therapy. Other outlets publishing articles included Inside Higher Ed (“Critics Question Conference on Facilitated Communication”) and the Syracuse University student newspaper, the Daily Orange (“Academics criticize conference co-hosted by SU”). Syracuse University is the mecca of FC because Douglas Biklen, is an emeritus professor of education and the Institute for Communication and Inclusion is housed there. Nonetheless, the Daily Orange has been a consistent critic, publishing a number of well-researched articles on FC.
Closer to home, two highly critical articles, quoting members of the True Voices, group appeared in the local Cedar Falls newspaper. The first article, “Facilitated communication conference draws fire at University of Northern Iowa” was published just prior to the conference. The second article was released the same week as the conference, and after the university had received the letter of concern. It reported that the university would form a committee to look into the institute:
We regularly evaluate UNI’s sponsorship of conferences and events to ensure that we are supporting high-quality programming consistent with the mission of the university. As part of this regular review, we will be convening a group of faculty experts from across campus to discuss the practices presented at this conference. (UNI spokesman Scott Ketelsen)
So, if nothing else, the True Voices offensive forced the University of Northern Iowa to endure some public criticism and prompted the administration to reevaluate their involvement with FC. If the experience at University of New Hampshire is any indication, UNI may choose to cut their ties to this discredited and dangerous technique. We can only hope.
Next on the True Voices radar is a two-day conference on FC at the University of Syracuse in October. I will report back on what happens there.
Note: To learn more about the True Voices group and its goals, listen to the episode of the Skeptic Zone podcast below. The host, Richard Saunders interviews Susan Gerbic, fellow of the Committee for Skeptical Inquiry and leader of Guerrilla Skeptics on Wikipedia. Gerbic, who is also an active member of True Voices, describes the genesis and goals of group.
Disclosure: I am also a member of the True Voices group.
References
- Biklen, Douglas. 2005. Autism and the myth of the person alone. NY: New York University Press.
- Heinzen, T., S. O. Lilienfeld, and S. Nolan. 2015. The horse that won’t go away: Clever Hans, facilitated communication, and the need for clear thinking. New York: Worth.
- Mostert, Mark P. 2010. “Facilitated communication and its legitimacy—Twenty-first century developments.” Exceptionality 18, no. 1: 31–41.
- Mukhopadhyay, Soma. 2013. Developing communication for autism using rapid prompting method: Guide for effective language. Denver, CO: Outskirts Press.
- Napoliello, Alex. 2018. “No More Prison for Ex-Rutgers Professor Who Sexually Assaulted Disabled Student.” NJ.com. May 11. Accessed July 22, 2018. https://www.nj.com/essex/index.ssf/2018/05/anna_stubblefield_sentenced_for_second_time.html.