Tuesday, March 8, 2016

The ethical duty to know: Facilitated communication for autism as a tragic case example

By Scott O. Lilienfeld, Ph.D.

Scott O. Lilienfeld is a Samuel Candler Dobbs Professor of Psychology at Emory University. He received his A.B. from Cornell University in 1982 and his Ph.D. in Psychology (Clinical) from the University of Minnesota in 1990. His interests include the etiology and assessment of personality disorders, conceptual issues in psychiatric classification, scientific thinking and evidence-based practice in psychology, and most recently, the implications of neuroscience for the broader field of psychology. Along with Sally Satel, he is co-author of Brainwashed: The Seductive Appeal of Mindless Neuroscience (2013, Basic Books).

I’m a clinical psychologist by training, although I no longer conduct psychotherapy. In the course of my graduate work at the University of Minnesota during the 1980s, I – like virtually all therapists in training – learned all about the ethical mandates of clinical practice. By now, all mental health professionals can practically recite them by heart: don’t sleep with your clients, avoid dual relationships, don’t show up drunk to work, don’t violate client confidentiality, always report child abuse and elder abuse to appropriate authorities, and so on. To be sure, all of these ethical requirements are exceedingly important.

Yet, with few exceptions, clinical psychology and the allied fields of mental health practice, such as psychiatry, social work, mental health counseling, and psychiatric nursing, have largely neglected another crucial set of ethical requirements, namely, what University of Nevada at Reno clinical psychologists William O’Donohue and Deborah Henderson term epistemic duties – responsibilities to seek out and possess accurate knowledge about the world. As these authors pointed out in a 1999 article, all mental health professionals should be “knowledge experts.” That is, they should be specialists who keep up with the best available research literature on the efficacy of psychological interventions and the validity of assessment procedures, and who continually draw on this information to provide the best possible client care. As O’Donohue and Henderson observe, mental health professionals are also ethically obligated to be relentlessly self-critical. Ideally, they contend, “one acknowledges that one’s beliefs may be in error and one seeks to rigorously criticize one’s beliefs to see if they are in error or are in need of revision.”

For far too long, the fields of mental health have ignored the somber duty of mental health professionals to act in accordance with rigorous scientific evidence. A decision to do otherwise is commonly regarded as a preference, not a serious ethical breach. The tragic case of facilitated communication for severe developmental disabilities reminds us of why epistemic duties are every bit as crucial as the other ethical obligations with which psychologists and psychiatrists are familiar.

The story begins in 1977 in St. Nicholas Hospital, an institution for individuals with intellectual and physical disabilities in Melbourne, Australia. There, a staff member named Rosemary Crossley developed a technique—originally called facilitated communication training—for purportedly extracting communication from individuals with serious physical disabilities, such as cerebral palsy, that often prevented individuals from speaking. Soon, the seemingly remarkable technique was extended to other conditions, most notably autism, now termed autism spectrum disorder. The premise of FC was straightforward: Contrary to what mental health professionals had long assumed, nonverbal people with autism are actually of reasonably normal intelligence. Nevertheless, they cannot express themselves verbally due to a neurological condition known as “developmental apraxia,” a purported disconnection between the brain’s language and motor centers. According to this theory, autism is fundamentally not a mental disorder, as psychologists had presumed, but a movement disorder. As a consequence, individuals with this condition are cognitively intact people trapped in a malfunctioning body. With the assistance of a facilitator who stabilizes the person’s hand and arm movements, the individual with autism can now suddenly type out words and sentences using a keyboard, letter pad, or similar medium.

Example of a keyboard used in facilitated communication,
courtesy of Wikipedia
In 1989, Douglas Biklen, a sociologist and Professor of Special Education at Syracuse University, observed Crossley’s methods and announced the startling news of facilitated communication’s effectiveness for autism in an influential 1990 article. According to Biklen, with the help of facilitated communication, many individuals with autism who were previously presumed to be mute and severely cognitively impaired could now communicate eloquently. Many composed poetry that told of their profound joy at being liberated from a prison of silence. Parents’ and other loved ones’ dreams of communicating with their nonverbal children were at last realized.

News of the stunning breakthrough reached schools throughout the United States, and it was not long before thousands of facilitators began administering the technique in classrooms. Scores of children with severe autism were mainstreamed into schools, excelling in classes with the aid of facilitators. Workshops in facilitated communication were offered to enthusiastic audiences. Facilitated communication was widely heralded as a “miracle” in the treatment of autism and related conditions, and for good reason.

To many skeptics, though, facilitated communication seemed too good to be true. How could children who could not read – and whose IQs were often estimated to be below 30 or 40 - suddenly use advanced language that conveyed remarkably mature thoughts and emotions? Where would they have learned this language? And given that many of them could draw, paint, or throw, why did they need a facilitator to stabilize their hand movements? Biklen and his colleagues were convinced that facilitated communication worked, yet they had conducted no formal research to support their expansive claims.

When controlled studies finally began to appear in the pages of academic journals in the early to mid-1990s, the scientific verdict was unanimous – and devastating. These investigations demonstrated persuasively that the apparent effectiveness of the technique was a diabolical illusion. When facilitators and children with autism were shown different stimuli, such as a dog versus a cat, the word typed out always corresponded to what the facilitator saw, not to what the child saw (see this classic video for a powerful expose of facilitated communication). The “effectiveness” of facilitated communication is therefore attributable to what psychologists term the “ideomotor effect”: a phenomenon whereby people’s thoughts influence their actions without their knowledge. Without being aware of it, facilitators themselves were guiding individuals’ hands and fingers to the intended letters.

Moreover, a dark side of facilitated communication soon emerged. Although precise numbers are hard to come by, dozens of parents were charged with sexual abuse solely on the basis of facilitated allegations from their children. Many of these parents were removed from their homes, and some were jailed or imprisoned, their reputations permanently tarnished. Yet we now know from controlled research that these accusations emanated from the minds of the facilitators, not the children.

The facilitated communication debacle took an even more sickening turn when Anna Stubblefield, a Professor of Philosophy at Rutgers University in Newark, a major proponent of the technique, met D.J., a 31-year old man who has the mental capacity of an 18-month-old, according to his doctors. D.J. has never uttered a word and requires specialized assistance to bathe, dress himself, and eat. Stubblefield began using facilitated communication to communicate with D.J. After a time, they “expressed their love” for each other, and eventually had sexual intercourse in her campus office. Of course, the sex was not consensual, as D.J.’s communications were not his own. In January of 2016, Stubblefield was convicted of aggravated sexual assault and sentenced to 12 years in prison; the case is being appealed.

Ouija board, image courtesy of Wikipedia
Tragically, Stubblefield and other proponents of facilitated communication had forsaken their epistemic duties in at least three ways. First, the ideomotor effect had been familiar to psychologists for well over a century. Such supposedly “occult” phenomena as Ouija boards, automatic writing, table-turning during séances, and water dowsing had long been recognized as the products of unconscious cueing and prompting of responses.

Indeed, while she was a graduate student at Harvard University under the mentorship of the great psychologist William James, Gertrude Stein – later to become a famed author –penned two articles on the ideomotor effect. Had facilitated communication advocates done their homework and taken heed of this well-replicated but insidious effect, they would presumably have been aware of how readily we can all be duped by it.

Second, from the outset, Biklen and other facilitated communication advocates never troubled themselves to conduct controlled studies to ascertain whether the method worked. Furthermore, when the negative data finally poured in from scores of laboratories, the advocates almost always explained away these findings using a plethora of ad hoc excuses. For example, some insisted that controlled studies of facilitated communication were essentially worthless because they placed participants in a “confrontational” situation, making them feel pressured to perform. Yet many of these individuals had successfully given facilitated “performances” at academic conferences, typing sentences in the presence of hundreds of amazed spectators.

Third and finally, Biklen and other facilitated communication advocates had failed in their obligation to be self-critical. Rather than ask themselves whether their claims might be wrong, they reflexively criticized the critics, dismissing their methodology on flimsy and unpersuasive grounds.

Ultimately, the proponents of facilitated communication very much wanted to help individuals with autism. But the facilitated communication tragedy teaches us that good intentions are not sufficient. Good intentions paired with grossly inaccurate knowledge and an absence of a self-critical mindset can be disastrous. This tragedy also teaches us that by not attending to their epistemic duties, professionals can do grave harm without intending to do so.

Want to cite this post?

Lilienfeld, S.O. (2016). The Ethical Duty to Know: Facilitated Communication for Autism as a Tragic Case Example. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2016/03/the-ethical-duty-to-know-facilitated.html


sgerbic said...

Wonderful summary! GSoW will be adding this article to the FC Wikipedia page where it deserves to be. That WP page will be viewed millions of times. We must educate if we are to make a difference. Shame on anyone today learning about FC in their schools or for their child, and they do not Google for the term and find excellent articles like this one, or for sure the well-written Wikipedia article and are not completely turned on their ear. I understand that those that have been using FC and have drunk the flavor-aid are unlikely to change their minds or even look for criticism. But there is a new generation of people to educate. Shame on us if we do not do so.

beth@autism-ask.com said...

How do you calculate in such fc users who go on to develop independent typing? Their lexicon remains the same across facilitators as well as when independent.

Arthur Golden said...

A supporter of Facilitated Communication, I have obsessively tried to read everything about Facilitated Communication (pro and con) since I first accessed the internet in 1997. However, I was unaware of a 2003 article by Douglas Biklen, probably because the title does not disclose any connection to FC, until the imbedded reference in the article by David Auerbach in his November 2015 Slate article. The 2003 article is
Biklen, D. (2003). Discussion. Studies in Philosophy and Education, 22, 371-375

In response to this blog article by Professor Scott Lilienfeld, I would like to quote from the article (for full citations email me at golden.arthur@gmail.com)

“While I agree that people should not have to prove authorship at each turn, and that authorship should not be set up as the product of autonomous individuals, what are we to make of the fact that critics of the method as well as many people who are supportive of the method (Erevelles can be included here), do not cite the many instances where people submitted to the objectivist tests and passed them according to objectivist standards (Bundschuh and Basler-Eggen, 2000; Crossley and McDonald, 1984; Cardinal, Hanson and Wakeham, 1996; Calculator and Singer, 1992; intellectual Disability Review Panel, 1989; Marcus and Shevin, 1997; Sheehan and Matuozzi, 1996; Steering Committee, 1993; Vazquez, 1994; Weiss, Wagner and Bauman, 1996)? And why not mention that one oft-stated test of authorship has been whether individuals could type without physical support, something that has been reported for several fc users (Blackman, 1999; Crossley, 1997; Rubin, Biklen, Kasa-Hendrickson, Kluth, Cardinal and Broderick, 2001; Broderick and Kasa-Hendrickson, 2001)? I find these omissions curious, especially when critics’ charges are so easily given, and then repeated in a most uncontested way, for example by Erevelles herself: “In all these tests, whenever the facilitator was not exposed to the same information as the client, the responses were completely wrong” (2002, p. 27).”