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to think that this isn't a "miracle" but a case of "facilitated communication"

(21 Posts)
britbat23 Tue 05-Jul-16 18:40:14

Saw this report on ITV news last night - about a ten year old boy with cerebral palsy who, apparently, has learned to speak with the help of his parents and a word-board.

The family has been all over the media and there are hundreds of comments on Twitter and Facebook - that this is a miracle etc and a lesson to other families not to 'give up whatever the professionals say'

But I get the feeling this is no miracle - but 'facilitated communication' - a completely discredited technique whereby the person 'assisting' the 'locked-in' individual is the one making the decisions about what is being said.

For a ten year old boy this lad certainly turns out to be very eloquent (he says before learning how to express himself via his mum and the letter board he felt like "a bird in a cage"...)

It's a sad story if it gives false hope to other families with 'locked-in' or non-verbal kids. Or AIBU?

noeuf Tue 05-Jul-16 18:48:09

I don't thinking it is , is it? Is it not more similar to technology used by Stephen Hawking for example, with the use of eyes rather than physical guiding?

Buggers Tue 05-Jul-16 18:51:37

I agree with you, I watched an interview and the mother looked like she was quite forcefully holding the boys head to look at the board whilst the woman holding the board was coming out with words you wouldn't normally hear from a 10yr old.

JudyCoolibar Tue 05-Jul-16 18:53:47

No-one claims it is a miracle, do they? Nor is there anything discredited about it. Eye-gaze communication is well established.

WannaBe Tue 05-Jul-16 18:55:50

I haven't read the article but reality is that every case is different, and what's wrong with telling parents to not give up. If means exist whereby some children gain from these AIDS and treatments and help then all power to them.

Certainly we should never hold back on looking at the positives just because they don't exist for everyone.

I read a book recently by a woman who had recovered from locked-in syndrome following a stroke. That was following another book I read by someone who had taken her as inspiration when he himself suffered a stroke and was left with locked-in syndrome. He hasn't recovered in the way she has. but should her achievement not be acknowledged in case it gives false hope to others?

Yes, often the advice/diagnosis given by the medics is accurate, but often the medics just don't know what the permanent outcome will be because the human body is often capable of things we know nothing or very little about.

britbat23 Tue 05-Jul-16 18:57:21

The difference with Stephen Hawking is that there is no human involved in his interaction with the computer - the computer tracks his eyes and he selects the right word with the help of predictive text. As his condition has got worse, the speed at which he can 'speak' has slowed down too, to one word per minute.

The boy in the video by contrast was rattling off complex sentences at lightning speed!

Judy - when a human being is the one tracking the eyes and deciding what the words are, that's facilitated communication and it's been involved in numerous controversies, most of which come back to the fact that the 'communication' is little but well-intentioned wishful thinking on the part of the carers, who desperately want to feel they can communicate with their child.

WannaBe Tue 05-Jul-16 18:59:51

And Stephen Hawking was given months to live at diagnosis wasn't he? Should we not talk about him because his life gives false hope to other sufferers of MND?

AgingJuvenileBinkyHuckaback Tue 05-Jul-16 19:03:51

But Stephen Hawking is definitely still alive, he has a heartbeat and everything. I think you need to read the article to understand the OP's problem with this specific case wannabe.

Samcro Tue 05-Jul-16 19:10:29

Its a start
My child used a communication book for years. The person helping her will have to see what she is looking at and read out, so,e times there is guess workover it, but if it gets the message that the child wants to say across thats good.
Now she uses a communicator so she has more comtroll,

noeuf Tue 05-Jul-16 19:14:01

My point about Hawking was that this seemed more like a rudimentary version of that technology than someone physically guiding the child's hand to letters. Plus the child is awake and looking in the right direction (some of the criticism levelled at facilitated communication).

QueenArseClangers Tue 05-Jul-16 19:17:48

There's a massive difference between autonomous 'eye' communication and facilitated communication.
FC has been discredited over te past 20 years and is fascinating. Most times the 'facilitator' doesn't even recognise that it is they that are giving the answers not the subject.
It's completely different to self communication like Hawkings/Diving Bell and the Butterfly where the chap used partner assisted scanning etc.

FC is in kinda the same field as ideomotor/Clever Hans phenomena.

user1467101855 Tue 05-Jul-16 19:41:28

I was a bit suspicious when it was claimed he was suddenly able to spell words such as "myriad" despite having no education whatsoever. It's rather fast and oddly adult in tone.

helensburgh Tue 05-Jul-16 19:42:37

Agree. V sad all eound

bumsexatthebingo Tue 05-Jul-16 20:27:54

Yanbu. I thought the exact same thing.

zzzzz Tue 05-Jul-16 20:31:46

I think the world is a MUCH more weird place than you all give it credit for.grin

Batteriesallgone Tue 05-Jul-16 20:34:06

My understanding of cerebral palsy is very limited.

But isn't it a condition with a huge range? So I'm not sure I get the 'false hope' argument. Saying you've cited terminal cancer = dangerous false hope. Saying you've assisted someone with a severe version of a condition with others may have milder forms of anyway = the differences between different sufferers are so vast anyway giving hope may actually be helpful to more sufferers than it disappoints. Maybe?

Like I say I know fuck all about it really.

Batteriesallgone Tue 05-Jul-16 20:34:32

*cured, not cited

DotForShort Tue 05-Jul-16 20:43:54

The video does make it appear that the child's mother is actually moving his head, rather than steadying him. In order to know with certainty that he is truly communicating, they would need to conduct a double-blind experiment. FC was hailed as a miraculous technique when first developed, but the experiments demonstrated conclusively that the facilitators were simply typing their own thoughts (though they genuinely believed they were simply helping the other person to communicate).

ShtoppenDerFloppen Tue 05-Jul-16 21:39:17

My daughter has a classmate who communicates with an eye-gaze device. It is people like the OP who assume that a broken body equals a broken mind that limit the future for children like my DD and her classmates.

Snowfedup Tue 05-Jul-16 21:46:45

It's really difficult to tell but I've been trying to see how the person pointing is able to follow his eye movements and at times they don't seem to correspond at all ?
Absolutely children with a physical disability should not be written off but at times that little boy to me just looks upset and uncomfortable !
It should be easy to check this by removing mum from the equation and getting him to communicate without her being present ?

QueenArseClangers Tue 05-Jul-16 22:02:44

But the OP isn't dissing eye gaze communicating at all.

FC happens exclusively with the person's carer/parent who can subconsciously 'write' the subject's answer.

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