Jan 13 2012

Facilitated Communication – Again – in the HuffPo

Here we go again – facilitated communication (FC) rears its pseudoscientific head again, and (surprise) the HuffPo publishes a completely uncritical article about it.

Kathleen Miles discusses the case of Jacob Artson, a boy with autism who is non-verbal. The article is framed in the typical gullible pseudo-journalistic style of – a brave family finds a “miracle” that allows them to communicate with their non-verbal son.  Miles describes the case in gushing terms, with only the barest reference to those nasty “skeptics” who are skeptical of such claims (and she completely botches even her short reference to the controversy, which is actually not even a controversy.)

Before I discuss the case of Jacob further, here is a quick background on FC. In the late 1980s and into the 1990 FC was proposed and rapidly incorporated as a technique for communicating to clients who were not able to communicate on their own, for a variety of reasons. The technique is simple – a facilitator “supports” the arm of the client allowing them to type on a keyboard or point to letters in order to spell out words.

The idea behind FC is that many children and even adults suffer from neurological disorders that are mostly, or even entirely, a matter of motor control, and not cognitive ability. These children may be non-verbal and unable to communicate, but there is actually an eloquent and intelligent person in there, they simply lack the motor skills to speak or otherwise communicate. By facilitating their motor control, practitioners can enable such people to communicate by typing.

This led to an explosion of use of FC and many apparent cases of children who were thought to be severely mentally handicapped, but were revealed by FC to be literate and intelligent, just “trapped” by their motor limitations.

It’s a great story. What parent of a mentally handicapped child would not want to believe that actually they are very bright, and finally be able to communicate with them? The only problem, of course, is that it’s all a cruel fiction.

Many experts immediately recognized the problems with this story and were appropriately skeptical. How can a child that, by every measure, has severe brain injury or limitations (beyond being non-verbal) suddenly not only be able to communicate, but to be able to read and write without having been directly taught, and further be eloquent, in some cases with apparent language skills beyond their age. It defied common sense.

Worse, in many cases it was apparent that the client of FC was not paying attention to the keyboard or letter board. It is impossible to one-finger type without looking at the keyboard (or without feeling where your hand is on the keyboard) but that is what many FC clients appeared to be doing.

It was suspected that perhaps the facilitators were unconsciously doing the communicating. This can be explained very easily with the ideomotor effect – subconscious motor movements that can be caused simply by expectation.

This was easy enough to test just by putting simple controls into place. When properly blinded facilitators are unable to communicate information available only to the client. A 2001 review of properly performed studies concluded:

Previous reviews of Facilitated Communication (FC) studies have clearly established that proponents’ claims are largely unsubstantiated and that using FC as an intervention for communicatively impaired or noncommunicative individuals is not recommended. However, while FC is less prominent than in the recent past, investigations of the technique’s efficacy continue. This review examines published FC studies since the previous major reviews by Jacobson, Mulick, and Schwartz (1995) and Simpson and Myles (1995a). Findings support the conclusions of previous reviews.

Scientifically, there is no controversy here. The claims of FC were always highly implausible and problematic, and the research has overwhelmingly shown that it is an illusion. It is a particularly cruel illusion – to patients, their families, and also practitioners who mean well and were as deceived by the ideomotor effect as their clients.

But there is no longer any reasonable sympathy to be had for practitioners of FC. The information is out there. The ethical responsibilities of due diligence and to first do no harm precludes the use of a dubious technique such as FC.

FC has died as a mainstream practice, but like all such practices it remains on the fringe. I am now seeing what appears to be a new generation of FC proponents, as awareness of FC has waned. Younger health care providers are not as aware of the FC story and so are not as immediately critical of it as they should be. The allure of FC is probably just too compelling for it to quietly go away, and every generation will likely have to debunk it anew.

Journalists like Kathleen Miles do not help the situation. She has also failed to do her due diligence as a reporter, and completely botched the story (and this is giving her the benefit of the doubt that she did not knowingly downplay the science for a good story).

I have no personal knowledge of the Jacob Artson case, beyond what is in the public domain on the internet. But all the typical signs of bogus FC are there. About Jacob Miles writes:

Perhaps what is most remarkable about Jacob’s ability to express himself through typing is how eloquent, thoughtful and intelligent he is. He sent an email to HuffPost explaining what it was like for him before he could communicate. “Before I was introduced to typing, I had retreated into anxiety, fear and despair. I read everything around me from books to TV credits to the newspaper on the kitchen table but I had no one to share my ideas with so I just retreated into my own imaginary world. I wasn’t suicidal because I have an incredibly supportive family, but I was constantly frustrated at my limitations.”

Yes – it is remarkable – so much so that it is cause for serious skepticism. It is simply unbelievable that a non-verbal child would not only have taught themselves to read and write but would be eloquent beyond their years. It also does not fit our cumulative knowledge about autism, which is not strictly a motor disorder but a diffuse disorder of brain organization and function.

The content is also suspiciously similar to other cases (like the Ron Hoben case) in which the FC was shown to be fake – a naive imagining of what someone who is trapped in a non-verbal body might be experiencing.

I could not find any videos of Jacob online, but in the Miles article there is a series of photos. Take a look through them, you will see several photos in which Jacob is apparently using FC to communicate. You will notice that in most of them Jacob is not looking at the keyboard, while the facilitator is. These are random stills, so this is not definitive, but it is also probably not a coincidence. If these stills are a representative sample, then the facilitator is spending more time looking at the keyboard than Jacob, because they are the one who is doing the communication.

Given the history of FC and the state of the research, the burden of proof is clearly on those claiming for a legitimate individual case of FC. There is real harm in not doing so. In cases of dubious FC the family is given false hope, and put through a deception that distracts them from dealing with the reality of their situation. There has been FC testimony accepted in the courtroom – people are in prison, or at least were put through a traumatic and lengthy trial, due to the “spectral” evidence given under FC (often involving accusations of abuse or rape).

And school systems have been forced to waste classroom time and resources interacting with students entirely through FC, which means not interacting with the student but with their self-deceived facilitator. This is apparently the case with Jacob as well.

Conclusion

While it is now on the fringe, FC is likely not going to disappear entirely anytime soon. This means that skeptics and scientists will have to occasionally remind the public that FC is fake, nothing but the ideomotor effect and wishful thinking.

This, off course, puts the scientific position in the negative role of pulling the carpet out from under those families who feel they are finally communicating with an impaired loved-one. That carpet should never have been put there in the first place – doing so, in my opinion, is malpractice and incompetence, given the state of the evidence and plausibility.

The same is true of journalists who promote pseudoscientific nonsense without doing even a minimal investigation that would reveal FC to be the harmful fraud that it is.

 

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