Like me, you may have seen this article in the Herald (or some other paper) on Wednesday this week. It tells the story of Rom Houben who, after suffering severe injuries in a car accident, was left in what doctors diagnosed as a ‘persistent vegetative state’ for 23 years. His mother, however, was insistent that her son was still both conscious & alert. Eventually, PET scans of his brain indicated that this appeared to be the case, & the article tells us that after 3 years of intensive therapy "the 46-year-old is now communicating with one finger and a special touchscreen on his wheelchair."
If only things were that simple…
Before I go on, I have to say that the case described in this article represents one of my worst fears – being ‘trapped’ inside a body that’s no longer capable of any independent movement, & being unable to communicate that fact – a phenomenon described as ‘locked-in syndrome’. At least, if someone in this situation could even twitch some part of their body to indicate a conscious response, others would know that ‘you’ were in there. So why am I a bit ‘iffy’ about this story?
One reason is when you watch the video accompanying the story, it’s plain that Mr Houben isn’t actually independently using the keyboard – he’s assisted by a carer who believes that, after 3 years of working with him, she can detect tiny muscle contractions in his finger to identify which letters he wishes to select on the touch-pad. (This fact isn’t mentioned in the original Herald article, although there is a slightly less credulous version here.) This is often described as ‘facilitated communication’ (a rather contentious field, as it turns out). I also noticed was that Mr Houben isn’t looking directly at the screen much of the time, & at times his eyes appear to be closed. Despite this, his assisted typing is both fast & fluent (which is surprising – I have extreme difficulty in finding the right key if typing one-fingered & viewing the keyboard obliquely).
This is not to suggest that the carer doesn’t genuinely believe that she is acting as an interpreter for Mr Houben. But it is to suggest that the media look at such stories with a more critical eye, instead of taking the whole thing at face value. There are certainly ways to examine what’s happening, includng the following possibility put forward by one of Orac’s readers in commenting on his post:
No one’s suggested the simplest way to test this use of facilitated communication.
I think all would have to agree that Houben must be able to see and read in order for this technique to work. So all that’s necessary are flashcards with short words on them. 4-5 letters each would do. A flashcard is shown to Houben but NOT the facilitator, and then Houben is asked to type that word. Any observer who stays in the room is similarly ignorant of the word, for double-blind purposes.
This way, the ‘facilitator’ doesn’t have to be blinded while typing or otherwise disadvantaged; it doesn’t matter that she can see the screen or has significant control over his hand. The test is just designed so that the questions have only one correct answer, and the facilitator does not know what that correct answer is.
PS And now I see that Darcy (over at Scepticon) has beaten me to it… Dr Steve Novella (who as a neurologist certainly knows more about the issue than I do!) has also provided a very thorough review of this particular case.