Facilitated Communication = FCUK?

[Richard Stokes]

Skeptical magicians might find Ben Goldacre's weekly column on Bad Science worth a read. For example:

Making contact with a helping hand

Ben Goldacre
The Guardian, Saturday 5 December 2009

"Here is a mystery. Rom Houben, a Belgian, was diagnosed as being in a coma for 23 years, and he has now made a partial recovery. This has been demonstrated via a series of recently developed brain scanning techniques (whose predictive value is not entirely known, but they are promising), and he is opening his eyes.

But the story goes further. It was claimed that Houben was conscious all along yet unable to move, affected by the phenomenon of "locked in syndrome".

This was reported as a news story around the world, in the Sun, Sky news, CNN, BBC, Telegraph (repeatedly), Der Spiegel, Australian TV News, the Guardian (in four separate pieces) and in hundreds more places.

But one thing raises alarm bells. Houben has been describing his experience of locked in syndrome using "facilitated communication" (FC); that is, someone holds his finger, can sense where his hand wants to go on a screen, and helps him type.

So it doesn't seem unreasonable to look at what is known about FC. Many have compared it to ouija boards, in the sense that facilitators may fully believe they are following an external force, when, in reality, they are generating purposeful movements themselves.

While there is no space here to describe all the studies ever conducted (and I wouldn't claim to have read them) I can tell you about some large reviews of the literature which seem competent.

The practice was popular in the 1980s and 1990s, and used mostly in cases of severe autism, so that is where much of the work is found. You might feel this is not entirely applicable to someone with locked in syndrome, but equally you would not ignore it. A research review on educational interventions in autism, commissioned by the Department for Education and Employment in 1998, found that in FC "almost all scientifically controlled studies showed that the facilitator was the author of the communication" and concluded that it would be hard even to justify further research.

An academic review in 2001 looked at more recent studies, updating two reviews with negative conclusions from 1995. It found overall, again, the claims made for FC were unsubstantiated.

If you prefer authorities to studies, the National Autistic Society says that five US professional bodies now formally oppose the use of FC, including the American Academy of Child & Adolescent Psychiatry, the American Speech-Language-Hearing Association, and the American Association on Mental Retardation. The American Psychological Association issued a paper on FC in 1994 saying studies had "repeatedly demonstrated that facilitated communication is not a scientifically valid technique" and calling the technique "a controversial and unproved communicative procedure with no scientifically demonstrated support for its efficacy".

My concern about this is pretty simple. If you watch the video of Houben's facilitated communication in action and I encourage you to do so, at http://qurl.com/coma you will see the facilitator looking at the screen and the keyboard and moving Houben's finger at remarkably high speed to type out a message, while both of Houben's eyes are closed, his head slumped sideways across the chair. Perhaps this was due to bad video editing. It has also been reported that the facilitated communicator was able to correctly identify objects shown only to Houben in private, although that is a less taxing task than the very rapid one-fingered typing shown on TV.

But all of these claims can only be assessed in the context of the overwhelmingly negative research on FC.

Journalists and religious commentators are already writing lengthy moral screeds on the implications of this case for our treatment of people in a coma. Houben's typing may well be genuine, and therefore atypical: nobody can have a meaningful opinion, because newspapers are no place to communicate breakthroughs which are incompatible with large swaths of current knowledge, and based on what seems to be weak and even contradictory evidence.

Now that the amazing case of Houben's facilitated communication has been made the subject of huge media sensation around the world, and extensive ethical speculation, I think we can all look forward to seeing it formally assessed and presented in an academic paper by his doctor, Professor Steven Laureys, of Belgium's Coma Science Group. I've made a note in my diary for this date next year. Just to check."

[mrgoat]

Ben Goldacre is my hero. Along with the weekly Guardian column, which you can read free online, he also has a great book also called Bad Science.

He is wonderful.

[El Mystico]

Fascinating. I'd been uplifted by the news story; but watching this video, it is hard to believe Houben is communicating.

[Tom Frame]

Yes, this non science and nonsense. It's like a bad performance of muscle reading.

[Richard Stokes]

"Many have compared it to ouija boards, in the sense that facilitators may fully believe they are following an external force, when, in reality, they are generating purposeful movements themselves."

The mention of ouija boards made me chuckle.

[David Alexander]

Knowing more than a little about muscle reading I had no belief in the efficacy of "Facilitated Communication" when it first appeared knowing that the active understanding and participation of the subject was absolutely necessary. The urgency to examine the efficacy of FC came when a profoundly autistic teenaged girl accused her parents and grandparents through her facilitator of sexual molestation.

Simple tests and experiments as in showing the facilitator and the subject different pictures resulted in the typed-out answer always being what the facilitator saw, not the handicapped individual.

Several other studies followed with the same results. As was reported in Skeptic magazine, When the facilitators were unable to see or hear what the subjects saw or heard, the autistic subjects unexpected literacy via facilitated communication was no longer evident.

Further, What were the costs of uncritically accepting these facilitated messages? False accusations of sexual abuse were made, parents were investigated for child sexual abuse (some were even jailed), children were placed in long term foster care, families were torn apart, millions of public school dollars were spent to hire and train facilitators, and years of schooling were wasted as autistic children sat in advanced classes rather than learning the life skills they would need.

[Henley]

The excellent PBS documentary on the subject is available online:
http://www.youtube.com/watch?v=Qyvw0Wu8b2M

[Jonathan Townsend]

Thanks, the experiment using a trick card so the patient saw one image and the facilitator saw anoter was most telling.