A while ago now I wrote about Rom Houben, who’d been in a vegetative state for 23 years but who, it was claimed, was really conscious inside an immobile body & now able to communicate via something known as ‘facilitated communication’. I and many others were sceptical of this claim – it looked too much as if the ‘facilitator’ was controlling what was going on. (That’s not to say they didn’t genuinely believe that they were assisting Mr Houben to communicate.) And there were simple ways to test this, which at the time the lead researcher in the case seemed to feel unnecessary.
Now Steve Novella reports that such a test has been done. Mr Houben was shown several objects while the ‘facilitator’ was out of the room, & subsequently asked to name them with her assistance. He got none of them right. Not one. This very strongly suggests that the facilitator, consciously or otherwise, was imposing her own words & understandings on Mr Houben, and supports Dr Novella’s characterisation of ‘facilitated communication’ as a pseudoscience. (My fellow Sciblogger Darcy Cowan has also posted something about this.)
I feel intensely sorry for Mr Houben & his family in all this. If Mr Houben really does suffer from ‘locked-in syndrome’ (one possible diagnosis), then imagine how that must be for him, day after day. And imagine how profoundly frustrated you would be, in that context, if some well-intentioned person began claiming to help you to ‘speak’ – and got it all wrong. And his family – his mother had insisted for years that her son really was alert inside his unresponsive body. To be told that he was, to have him ‘speak’ to her, and then to have all that taken away by the lead researcher’s admission that he’d got it all wrong – to me this is indescribably sad.
It also saddens me that people will continue to cling to the hope – exemplified by one of the commenters on Dr Novella’s post – that facilitated communication really does offer the chance of communicating with people who are otherwise cut off from their loved ones (eg children – & adults – with severe autism). But, as the Houben case shows, the words will be those of the facilitator, regardless of their beliefs or intent. (And in case you think I’m being too harsh here, the Houben case is not the only one where the idea of facilitated communication has been shown to be false.)