Nov 08 2012

Facilitated Communication Persists Despite Scientific Criticism

Facilitated Communication (FC) is a technique for allegedly aiding those with communication impairment, such as some people with autism, to communicate through typing or pointing at a letter board. The idea is that some children have greater cognitive ability than is apparent through their verbal skills, but they lack the motor skills to type or write. The facilitator in FC is trained to hold and support their client’s hand, to help stabilize it, so that they can type out their thoughts.

FC was enthusiastically embraced by the special education community in the late 1980s and early 1990s but problems quickly emerged, namely the question of authorship – who is doing the communicating, the client or the facilitator?

The scientific evidence came down clearly on one side of that debate – it is the facilitator who is the author of the communication, not the client. The American Psychological Association has reviewed the available evidence and produced a position statement that concludes:

The short version of this long story is that study after study showed that facilitated communication didn’t really work. Apparently, the positive results that had generated so much enthusiasm were the results of a subtle process in which well-intended facilitators were answering questions themselves – without any awareness that they were doing so.

A 2001 review by Mostert came to the same conclusion – that the evidence supports the conclusion that the facilitators are the authors of communication in FC. He also points out that there is a relationship between the rigor of the studies and the results. The most rigorously blinded studies are all negative, studies with some blinding but also with problems are mixed and often show some positive results, and unblinded studies are all positive, showing dramatic effects. This pattern mirrors that of ESP and many other pseudosciences that are primarily the result of self deception.

In response to the negative studies, dedicated proponents changed the way they do research, it seems in order to manufacture the positive results they want. They shifted from quantitative research (where outcomes are objective and procedures can be blinded) to qualitative research, which is ripe for deception. For example, the Institute for Communication and Inclusion, a pro-FC organization, lists supporting research that cherry picks qualitative studies and other apparently positive studies. Such studies involve analyzing the writing style of the FC client to show that it is consistent, even with different facilitators, or tracking the eye movements of the client while being facilitated.

The strategy here is obvious – studies that directly and objectively confront the key question, who is authoring the writing in FC, gave an answer proponents did not like. They therefore shifted to indirect inference which is more amenable to judgement and qualitative analysis so that the desired results can be manufactured. There is no good reason to favor such indirect inference over direct study, except that it is more easily manipulated. The scientific community, understandably, remains unconvinced.

The real lesson of FC is how profoundly yet subtly people can deceive themselves, and how difficult it is to craft a scientific study that is rigorous enough to eliminate all such deception.

An excellent documentation of the nature of self-deception involved in FC comes from a recently published commentary by a former FC user: Facilitated Communication—what harm it can do: Confessions of a former facilitator by Janyce Boynton. Boynton recounts how she earnestly tried to do FC properly and responsibly, following published guidelines to minimize self-deception:

These guidelines recommended looking for ways to make sure we were not influencing the child as we facilitated with her. We did simple tests, like asking the child questions and watching her behavior to see whether what she expressed through FC conformed to how she was behaving in real life. We looked for spelling and syntax errors in her communications. We looked for turns of phrase that might be attributed to her own unique outlook on life. We consciously tried putting minimal pressure on the child’s arm when we worked with her. We thought we were being vigilant enough to notice if we were influencing the communications.

In the end, none of this mattered. It was not enough to prevent deception, and merely resulted in a false sense of security, in fact deepening the self-deception.

The qualitative research and Boynton’s experience highlights the problem of using ad hoc arguments or using criteria that have not been validated. FC proponents assume that a consistent style on the part of a client writing through FC indicates that they are the true author – but that assumption has never been validated. As with the guidelines above, such arguments provide the false impression of being scientific or having adequate controls, but they are not evidence-based. This is the very essence of pseudoscience.

In Boynton’s case the deception of FC led to tragedy when her client started to “communicate” that she was the victim of sexual abuse by her parents and brother. Such cases, unfortunately, continue to occur.

As long as an intelligent facilitator is in the loop of communication it is possible that they are the source of the communication, and only rigorous blinding can convincingly demonstrate otherwise. I have often thought that perhaps a simple device can be created to provide passive support. Imagine a sort-of cradle that the communication-impaired person can rest their arm on. It is mobile but provides stability and resistance. Perhaps it is even computer controlled to react to the user’s  movements but stabilize and support them – what facilitators claim they are doing. But such a device would not have a subconscious mind able to subtly direct the user’s hand to specific letters. It does not seem that such a device would be difficult to create, and perhaps it is telling that a similar device has not replaced human facilitators in FC. A human can still be present for encouragement and emotional support – but they are simply not holding the client’s hand.

FC continues to exist on the fringe of legitimate science, but continues to fool journalists, patient advocates, and even physicians. Recently the Thinking Person’s Guide to Autism, usually a reasonable blog, published an interview with Amy Sequenzia entirely through FC. Amy has autism and is non-verbal. Through FC she has written poetry, attended school, and given many interviews. I could not find any videos of her typing or objective assessments of Amy’s authorship. I am often reluctant to make specific statements about an individual unless I have seem some direct evidence. It is not impossible that someone with language skills may be genuinely communicating – perhaps even the facilitation is not entirely necessary. Such borderline cases (I am not convinced any exist, I just can’t rule them out) should not be used to argue for the general validity of FC as applied to a broad spectrum of disabilities.

With regard to Amy, I would be willing to look at more specific evidence or even meet her in person if it could be arranged, and would reserve ultimate judgement pending the one type of evidence that would settle the question – a proper blinded evaluation of her communication ability. From what is available online, there is considerable reason to be skeptical that she is the author of the eloquent writing attributed to her. One reason has to do with a core problem with the theoretical underpinnings of FC – the notion that people who are non-verbal can have advanced and unrecognized language skills.

It is not neurologically impossible for speech, writing, and language to have isolated deficits. Expressive aphasia is a lack or decrease in the ability to speak without a  deficit in comprehension, although writing is usually impaired as well. There is no reason, however, to believe that people who are non verbal due to autism have such a precise focal deficit, rather than a more global language deficit.

Perhaps the biggest theoretical problem with FC, however, is that many children through FC displayed sudden advanced language skills. According to reports, for example, Amy starting writing through FC at age 8 and did so as soon as it was tried. There is no plausible explanation for how a child that was not specifically taught how to read and write could have spontaneously learned to do so, and at an advanced level.

Conclusion

It is sad that FC continues to survive despite the overwhelming scientific evidence that it is not a legitimate method of communication, but rather an elaborate exercise in self-deception.  It is a useful example of how powerful and subtle self-deception can be, and also of the ways in which scientific evidence can be manipulated to generate a desired outcome.

Further, I find it disturbing the extent to which FC proponents have attempted to take the moral high ground. They talk as if the proper and moral thing to do is to just believe – believe that children can be vastly more intelligent than they appear, and that what everyone hopes to be true actually is true. The other side of this coin, of course, is a criticism of scientific skepticism as cold and dismissive.

This is the exact opposite of the truth. Everyone is best served if we know the real truth through the most reliable scientific methods possible. Wishful thinking and self-deception should be weeded out with rigorous methods. The APA echoed this sentiment in the conclusion of their statement:

This scientific episode offers a positive lesson: If psychological research does not always give us hoped-for answers, it does help us sift potent reality from wishful thinking, and thus to focus our energy on real solutions. There is no magic wand that one can wave to make profound disabilities disappear. However, as researchers continue to investigate why serious disabilities occur, and how they can best be treated, there is good reason to be hopeful for better prevention and treatment in the future.

No one is helped by a comforting illusion. Scientists who are skeptical of FC are not dismissive or cold, they simply understand something about the nature of deception and want to make sure that people with disabilities and their families are not being unintentionally victimized by well-meaning but misguided therapists.

Like this post? Share it!

19 responses so far