An article in yesterdays Longmont Times raised (for me anyway) the issue of Facilitated Communication.
This is an issue that is, in its own way, just as divisive as the vaccine issue amongst sections of the autism community and science. You see, some autistic and autism advocates believe passionately in the efficacy of FC whilst science largely rejects FC:
Current position statements of certain professional and/or advocacy organizations do not support the use of Facilitated Communication due to their objections that it lacks scientific validity or reliability. These organizations include the American Speech-Language-Hearing Association, Association for Behavior Analysis International (ABAI), American Academy of Child and Adolescent Psychiatry, and the American Association on Mental Retardation. ABAI calls FC a “discredited technique” and warns that “its use is unwarranted and unethical.”
The Association for Science in Autism Treatment reviewed the research and position statements and concluded that the messages typed on the communication device were controlled by the facilitator, not the individual with autism, and FC did not improve their language skills. Therefore, FC was reported to be an “inappropriate intervention” for individuals with autism spectrum disorders
The section of the autism community that accepts FC as a valid technique is largely the neurodiversity movement in who’s ranks I place myself. But is this making me a hypocrite? I place such firm emphasis on science when it comes to vaccines I can do no less in other areas. But on the other hand voices I trust implicitly within the neurodiversity movement speak out in favour of FC. Amanda Baggs, Kathleen Seidel and (I think) Michelle Dawson to name but three. * [correction: Michelle is not an FC supporter] *
So what do I do? Should I be making a call for more studies (sounds familiar!) or dismissing the voices of autistic people I trust on the issue or dismissing established science?
Or is there another option? What are your thoughts on FC? A decent debate would be useful for lots of people I think.
Left Brain Right Brain 
I believe that it is possible to disagree respectfully within a community while still holding true to your own beliefs (certainly the World Council of Churches often manages it, and religion is often more divisive than anything else.) Debate is rarely a bad thing if it is done respectfully, and I don’t believe that we can just ignore scientific evidence in one area while holding less controversial subjects (less controversial at least within our community) to a higher standard of proof just because some of our friends disagree. In every marriage, community, belief system or movement there are going to be growing pains, and I don’t believe that ignoring the elephant in the room is going to help at all in the long run.
I’d certainly be interested in learning more about FC from people that I respect- from everything that I’ve read and seen it doesn’t seem to be valid, but I’m hardly an expert on it. I’d be very interested to know if there are any scientifically valid studies that do give it credence, and if not, why should we hold it to a different standard of proof?
I think one of the problems, from the studies on FC, is that you can’t be sure the answers are from the facilitated person rather than the facilitator. I seem to recall one study where the tested persons gave very discordant answers depending on whether the parent or a trained but unrelated person was facilitating.
Rather like a Ouija board, the parent may not be aware of their controlling of the conversation, it’s based on unconcious muscle movement. But I think more studies would be interesting.
@ Jen: as far as I have found, there are no current studies that give it credence. All the recent studies (all a few years or more old) discredit the theory. But, like you, people I respect accept it so I would like to see more proof it works or doesn’t work.
I would like to see what happens when FC is combined with some of the new Japanese exoskeleton advances. If my understanding of FC is at all realistic, then it has to do with attentuating extraneous movement. The same exoskeletons that can magnify movement should be able to attenuate it as well. If a machine takes over supporting the communicator, perhaps we’ll get a real test of FC.
From studies I’ve seen, the vast majority of what is called FC is fraudulent (even if the facilitator is not doing it on purpose, in much the same way an astrologist might be convinced of their woo.) However, it is possible (not proven) that it has worked for some individuals, i.e. there are people who now communicate independently using a keyboard who have started out using FC.
Everyone uses FC, EVERYONE… they just call it “Hand over Hand” now. How else do you teach ANYONE how to do a task that cannot learn easily by watching you??? To discredit it 100%, is impossible.
NOW… if someone gets handed a keyboard and claims their child is a genius – add Estee Klar in this group – is blatantly lying.
One thing I have discovered, and I have both ends of the spectrum in my house – is that you CANNOT skip a developmental milestone. You have to learn to roll, sit, crawl and then walk… always.
That’s not to say that the use of a weighted vest, weighted pencils (little boy has one), weighted wristbands, don’t all work and don’t all help, because they do for those that require the sensory input to concentrate.
But to claim a 5yr old or a child that has never seen a computer or a keyboard or has never been taught to read or to spell, never learned to put together a sentence, can miraculously produce epics…. not true.
I’d say listen to the experts. Of course, in this case, I’m deciding who the experts are!
Communication, even facilitated, is a profoundly difficult task for some kids. To even get them to begin, to want to leave the world of passive existence is going to take intermediary steps. It’s got to be made worth the trouble for so many _children_ who have to undergo intensive machinations to do what most kids do in an instant without trying.
We (her mom and I) developed a low-tech (made out of manilla paper) communication device for a 11 year old girl with severe CP. It might take her 5 minutes to spell a 4-letter word. But we tried to be kosher, and make sure it was her efforts. We were pretty sure it was when asked “Who is coming”, and she spelled “Gude” for Judy, her speech teacher. She had never been taught to spell or even read as it was supposed she was retarded. It was a laborious process on the part of her teacher (me) and her mother to get to this point, and took weeks to develop a simple communication device that would fit her. It’s easier just to teach kids nursery rhymes that you sing to them all their lives………………… jus’ sayin. Now, I know I never was a “normal” teacher, and it’s unlikely that you are going to get a “professional” to want to see anything but the “child” who is easy to please in any severely handicapped person. As long as they remain an “eternal child”, they are a hell of a lot of fun. That’s why I lived in fear that “fossilized communication” would become the standard for my student and her mother.
See the following abstract for clarification:
http://www.ncbi.nlm.nih.gov/pubmed/10884908?ordinalpos=8&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
So, it’s either FC (facilitated communication), or FC (fossilized communication). What would you want for your child?
(PS–that young girl changed the way I see handicapped people profoundly.)
It’s perfectly acceptable to disagree, I spend a lot of my time disagreeing with my neurodiverse colleagues on all manner of things except for the fundementals, that we are people with rights.
How to achieve them however is often a matter of much heated discussion.
For the record I am one who considers everything to do with diet as woo, on the other hand because there are a significant number of people on the spectrum following the diet I would no more wish to interfere with there right to follow it by choice, than I would there right to be vegan or kosher or whatever.
With regards to FC, there is no doubt that there is evidence of massive fraud (or delusion).
On the other hand there are examples of people who have gone on to type independently, however I have to say seeing the ‘magical’ explanations from t from some advocates of FC,(who certainly do the cause no good whatever by there rejection of science) they are way out there with the homeopaths and pixies.
The woo factor is important. But to me the greater factor that I saw repeatedly in my two years (yeah, I know…BIG hero, eh??)was the inability (perhaps desire) of teachers to see their handicapped students as cognizant beings.
Or maybe they wanted to, but the most difficult thing in the world is to build that bridge. It’s just easier to ignore the need and fossilize communication at a pre-school level.
ESPECIALLY when the student may have behavior modifications employed. You wouldn’t want to think of treating someone with an adult cognizance like _that_!
Dawn – the way it works is that the advocates of FC have the burden to show that it works. No one has to prove that it doesn’t. Of course, all the studies done indicated that, sorry, despite the wishes of those who want it to work, it doesn’t. Perhaps there is some benefit to the child in the interaction (touching/contact, whatever else) but it doesn’t actually allow communication. That seems like wishful thinking. I’m sorry to hear that some of the people I’d otherwise respect fall for the same irrational thinking, but we’re all human and all vulnerable. For me, this means that now I know I have to double check anything they write, looking back at their sources in more detail, since the lack of critical thinking in one area can be indicative of more.
If those who think FC works want to pursue more ethically-based studies (I’ve noticed the same thing, Rose), then let them, but for people to rely on it now…it doesn’t stand the reality test. If we are wrong, and it is found to work, or have some benefit that otherwise would not occur, then it can become a useful tool/procedure as opposed to the wish-fullfillment woo it seems to be.
I have never supported FC in any way. I’m amazed (gobsmacked…) that anyone would suggest I do.
In reality I’ve been berated (at length, and to extremes) by some FC promoters, for taking a science- and ethics-based position re FC. You can find this on the TMoB board.
My view includes that whose who have promoted FC have been grossly irresponsible, which has harmed autistics.
To claim that I support FC is totally false. Also, unlike many others on the Hub, I do not support AutCom or the “USD Autism Institute,” in part because they promote FC.
Thanks for the correction Michelle.
I suggest changing the original post, to remove what is extremely misleading information. Many thanks in advance.
Having been berated at length by FC promoters, because I think autistics deserve recognized standards of science and ethics, I’m not looking forward to being attacked by others because it is falsely and misleadingly reported, on a very popular and presumed-to-be authoritative blog, that I may or do support FC.
Claiming that I may or do support FC is as wrong and misleading as claiming that I may or do support the DAN! view of autism. Or for that matter, as wrong and misleading as claiming that Kev Leitch may or does support the DAN! view of autism.
I don’t think I’m talking about FC…nevermind!!
Have just done that very thing Michelle 🙂
FC is to a speech disability as a wheelchair is to a walking disability if the possibility of walking exists … time would be better spent walking, and if speech is possible practice speech.
Normalisation should always be balanced against the cost to the individual.
Non-obligate w/c users can often be better off using a wheelchair than a painful, exhausting, frustrating and often embarrasing and dehumanising attempt at walking.
There’s no evidence to support the idea that speech normalisation is the preffered, appropriate, ethical or even possible universal option for each and every person with ‘atypical’ speech.
I have been typing both independently and with support (fc)
since l992. I think I would have the necessary experience
therefore to make an informed comment and state that FC
offers support to people that need it for a number of reasons.
I had low muscle tone, suffered from Mearles/Irlen/Scotopic
Sensitivity and also have a diagnosis of attaxic cp and
the disability label of autism. Along with those of low
functioning, learning disabled. I was denied an equal
education on grounds of disability. At the age of 19 I
joined Advanced Level (pre-university in England) on the
merit of a poem that I had written. I am now classed
as physically disabled and have an IQ of approx 135 and
was stated to be the brightest student in a Lecturers
career. Am I mad that 19 years of my life were taken
from me – exceedingly. Will I ever forgive the people
that condemned me to the sheer hell of segregated
education – probably never. So can I communicate –
I will leave you to work that out for yourselves –
and no one is supporting my arm whilst this is typed!
Over the years my hands have strengthened, I wear tinted
lenses but my verbal speech has made little headway but
I am able to communicate in a way I never thought possible.
Contributing author to “Autism and the Myth of the Person
Alone”.
I’m not really up on the details, but could it not be possible that there are cases of legitimate FC and cases of phony FC. I would have thought that the chances of legitimate success would vary widely with both the person who one wishes to help and the person doing the facilitating.
In comparison to the more extreme misrepresentation (which was read by numerous people before it was corrected in any way) of my work this may now seem trivial.
But I also don’t see “neurodiversity” as a movement (I realize others do), and I lack the skills and abilities required to be part of any movement.
It’s true that my work and views are very frequently misrepresented, often in extreme ways. People who read (and write) this blog are probably much more likely to have read the misrepresentations than to have read my work. But this does not mean the misrepresentations (and now there’s more) are accurate, or that it is a good thing to repeat them.
@Richard: I think you have made the point that I was trying to make. You were helped to communicate, but eventually you were able to take over on your own to communicate. No one here is saying you can’t communicate alone. The concern is that some are never “let go” to communicate on their own, and then one wonders if it is truly them or the facilitator.
@Farmwifetwo: You also proved my point (which means I did not make myself clear). Teaching “hand over hand” still means as the steps are learned, you allow the child to do alone what he/she can do alone, and only step in once they reach a point they need help. (However, I have to argue with you – amiably – my mother’s constant lament was that my sister never DID crawl. She went from sitting/standing to running around after my brother and me. So she missed a step in there.)
From what I read about FC, as I said, the problem was when tested by a parent vs a trained non-family facilitator, the results of what the child produced was extremely variable (from a parent/family member, the child would give full sentance answers, from the non-family member the same child could only give 1-2 word misspelled answers to the same questions.
Again, I am not saying FC is worthless. However, I do feel that if it is used, great caution should be taken to make sure the facilitator isn’t putting their words into the person’s mouth/typewritter.
As Farmwifetwo pointed out, I wouldn’t expect any child, NT or autistic or whatever, to start off spelling all words correctly, for example, if they have never been exposed to written words. One to two word sentances would be logical starting periods. Epics (in a child) would be questionable.
However, FC started with an adult like Richard who had 19 years of living under his belt would probably come out with fuller sentances but I would question immediate perfect spelling and grammar.
Richard – would you be willing to tell us how FC started with you and how you were able to make sure your words were written instead of what the facilitator wanted?
The prevailing understanding of FC, which I have seen no reason to question, is that it is similar to the “Clever Hans” case, and also comparable to “automatic writing”. But, I think there are significant implications even within this standard appraisal. It strongly indicates that autistics are NOT innately handicapped in reading “body language”. I think it is also debatable whether FC messages are “only” coming from the facilitator. It might instead be regarded as a “gestalt” of both parties’ personalities in interaction.
On a side note, I received this comment recently in response to a “fan fiction” post: “If it was the movie, I could imagine them acting like that very clear.” As someone who is “supposed” to be impaired in body language, I consider it high praise.
Michelle no one ‘grossly misinterpretted’ you so please, just once, stop sulking when a genuine error, corrected upon request is made. I’m not super human, I’m capable of error. I made one, you noted it and I highlighted it in both the comments and the post. End of story. If you want to carry on moaning, go do it somewhere else.
“FC” and “hand over hand” are *not* the same thing.
jypsy,
Thanks for making the extremely important comment that:
““FC” and “hand over hand” are not the same thing.”
Now, could you or anyone else give a more detailed explanation?
I’m afraid that I am not the one to attempt to do so.
Arthur Golden
Like I told you Michelle, this ain;t the Michelle Dawson show. Take it elsewhere unless you have something on topic to say.
In answer to your questions:
I was not helped to communicate. I was given support to enable me to type. These are two different areas of expertise as they would be in mainstream. One is an ability to type, the other is the ability to communicate. I had a vast verbal vocabulary as a child and I spoke the occasional sentence.
I began to type at the age of fifteen when I finally realised that my verbal speech was not going to allow me to communicate at a level that allowed me to express myself. By this age I was really angry that I was regarded as intelligent by some people and learning disabled by others and furious at being said to be low functioning.
I never typed hand over hand – I typed independently – a sentence, a paragraph and then a page, and opted for support to enable me to type for longer periods and at greater speed. I was so desperate to communicate at this age that I did not mind the dependence of support.
I was trying to walk at seven months, never crawled other than on my stomach, pulling myself along, until I given remedial movement at the age of three/five and learnt how to crawl. Because of ataxic cp I did not walk until I was 20 months and then with great difficulty. I am regarded as a miracle in the medical profession that I walked. At the age of 14 my movement was stated to by extremely high functioning in that I adapted every muscle to compensate for an overall ataxic condition. The physiotherapists were amazed at my ability. But at the same time I was seen to be low functioning by one person and highly intelligent by another. A teacher who had worked with children with cp recognised my intelligence. People that had not just assumed that I was learning disabled. I attend schools for children on the spectrum.
I never under went fc training, my mother supported my hand as a baby, child, and from the time I was five to teach me to write, and it was just a natural process of progression. I taught myself to read from the age of two and a half. I can remember the books and the words in the books. My mother helped me to learn to read from the age of five. It was mainly due to her efforts that I am where I am today because everyone wrote me off as retarded at the age of two. When I began to type at the age of fifteen I was able to spell words correctly. A teacher at school at the age of 14 stated that I was able to read anything – out loud. Again due to my own efforts and that of my mother. I always loved books and still do. I have hundreds of them on many subjects.
My typed language improved dramatically in the space of a week after I was diagnosed with Mearles/Irlen and I wore tinted lenses. I have typed for thousands and thousands of hours. I worked at my communication. I was determined no one was ever going to refer to me as low functioning again. If you have poor language skills you have never had the opportunity to put verbal language into practice. And it is scary and it is very emotional. I first typed on a small device called a canon communicator which has a very small keyboard with a guard because it meant that I did not have to use arm movement merely move my hand. I am now able to type on a keyboard but still prefer a notebook because of the smaller keyboard. I am also able to use a keyboard on a mobile telephone if I use my finger tip – with some difficulty. It is great to be able to text people because I am not at a social disadvantage.
I studied English Literature at College and Art History – my choice. I was advised that I should study at degree level by my College Lecturers on the basis of the work I had completed at College. I was twenty before I realised who I could be as a person – not the person that other people perceived me to be. For the first time at mainstream College I was treated with respect for my ability not demeaned because of perceived ‘disability’.
Every child will have had a different experience. Words are part of the world – books have words next to pictures, and sentences. If you all learnt to read as children why do you think that people with disabilities are any different to yourselves. As I understand it when the tests set for fc users have been met the goal posts have been moved. Every group of people with ‘disability labels’ have been seen as ‘retarded’ – people with cerebral palsy, people with Down’s, people with hearing difficulties, and people who have the ‘disability label’ of autism. Being unable to speak does not mean being unable to think or being unable to comprehend. It certainly does not mean ‘in a world of ones own’. I had to fight every inch to win a war against disability. The alternative was that I became the ‘disability label’.
Why would I allow any person ever to move my hand to type a word when I am perfectly capable of typing my own words. As I stated ‘support’ allowed me to type quicker and for longer periods.As a child in special education at the age of nine I can remember being furious that people told me a sentence to repeat back and I would often refuse because it was not what I wanted to say. The example that remains in my mind is “May I have a drink please” – probably because I had been able to ask for a drink since I was a child of two. And perhaps at the time I did not want a drink.
I had the building blocks in place so as a society we have a duty of care to make sure that all children have the building blocks in place and give them the opportunity to learn and express themselves – whether it be one word or two words or one sentence. Nothing is more soul destroying than being unable to communicate.
Richard
@Richard: thank you for your explanation. So you never received facilitated communication, you were simply assisted in doing what you could do on your own so you could complete your typing more quickly. But I really appreciate your complete description of what you did, learned, and can do.
People within a community can certainly disagree, and the accuracy of a study or studies is debatable depending on the criteria used. If you believe there are problems with the studies that have been done, you certainly have the right and perhaps the responsibility to talk about those issues.
That being said, I thought the purpose of communication devices was to enable the person to communicate out loud independently. It’s something I’ve been looking into for my son. I understand using hand-over-hand to teach the person how to use the device, but isn’t the point to move towards the individual’s independence?
I would think an on-going facilitator would defeat the purpose. I would also suspect that, even were it proven that facilitated communication can work, there would always be the possibility in individual instances that the facilitator was essentially putting words into the autistic person’s “mouth.”
@Dawn – you don’t “receive facilitated communication”. That sentence structure makes me wonder just what you think “FC” is and are referring to.
@Stephanie – FC is not a “communication device” and the “out loud” isn’t what “FC” or AAC is about. Is sign language “out loud”?
I have often had words put in my mouth, it has even happened today, and I am an independent speaker & typist. It doesn’t take a facilitator to do that.
I will only ever vouch for the validity of my son’s “FC”. I will assume everyone else’s is valid unless provided with evidence proving otherwise. In the same way, I will assume everyone is being honest and truthful, unless provided with evidence proving otherwise. Naive maybe but that’s how I am.
My son started typing with support just before his 4th birthday and went on to type independently. Depending on your definition of “independently”, that was either in grade 3 when he was 8 or grade 9 when he was 13.
This is not a simple topic. Even “Facilitated Communication” – the word itself, has taken on so many meanings and has come to include so much, I am hesitant to and rarely use it now (rather like “neurodiversity” – I subscribe to my definition of neurodiversity but not that of many others). Alex typed with support/assistance. The technique was not “hand over hand” (he did learn a lot, including printing & cursive writing, hand over hand). I call it “supported typing” and you can call it whatever you want. You can see it in a number of videos on our YouTube channel, I’d recommend starting with this one. There is some hand over hand prompting and printing (a period and a couple of letters after it) as well as an attempt at supported typing (the batteries were dead on the device) here.
From preschool up until about grade 3 Alex’s TA would mark his schoolwork “Ind” (independent), “FC” (supported) or “h/h” (hand over hand) to indicate how it had been produced. This applied not only to text but to drawing, colouring, using scissors, etc etc.
Richard isn’t the only one who needed help to communicate. All of our children would communicate if they knew how, in our language, or if they had the muscle skills, or any of a million reasons.
Richard, to hear you talk only reminds me of Paige, who I left to fall back into the abyss of special education. I don’t know that her mother has the strength/energy to physically care for her, as well as learn how to become a teacher. Paige is totally depedent.
Let me tell you, if it isn’t easy…people just don’t care! Or maybe they don’t have the ambition to try or the desire to help. There are many minds rotting in special ed. My own son spent years there…his “behaviors”, you know…
Aw, to hell with it. Decide whether it’s better to assume that a person is fully cognizant, or that it’s better to assume they have the forever mind of a child. How you treat them is up to you, and has nothing to do with FC or not FC. Which do you think would be the most helpful? If you were going to make an assumption on the side of error, which mistake would be the least damaging?
I’m not writing sense. My mind easily misses the mark, but I try.
I would rather ass a person believed to be brilliant rather than believed to be retarded.
I meant, I would rather assume a person to be brilliant.
Brain Farts…old age…
Stephanie, some children/people with poor motor skills may never reach independence – so having been unable to communicate myself I would ask the question – do we as a society deny children/people the opportunity of communication? Do we have the right to make that decision on behalf of someone? Surely it is down to the individual to make that decision for themselves? We have to take into account the rights of the individual whatever
their ‘disability label’. Do we as a society believe in equality?
Dawn, as a child I was unable to do many things and each new skill I learnt was with facilitation. For instance, as a small child my hand was too weak to hold a fork, so my mother held my hand until I was able to hold the fork. I was unable to pull my socks on, so my mother held my hand until I was able to do it – it took four years. I learnt to write with facilitation until I was able to do so independently. The issues will be different for each individual. Each person will have different areas of difficulty. So yes, I do have experience of
facilitation. My first experience of typing was at the age of
five, my hand was to weak to hit the key, so my mother held my
hand and I typed a word, a sentence. I was fifteen before I
typed again and I held a picture of the typewriter in my mind
and remembered how it felt, and decided that I had nothing to lose. Although I was able to type independently it took extreme effort. If I could overcome adversity than so can others. We owe it to them to give them the means by which to communicate. Many children have not been screened/or are unable to be screened for tinted lenses because they have no language – it could change their world.
I had to relearn everything I had ever known once I had tinted lenses. Instead of sensing my way around I had to physically
learn to see with my eyes in a different way – I described my
vision as fractured and detached – and for some children/people
it would seem so frightening they would retreat back into the
safety of what they know. It would be hard to type unaided if
the keyboard is out of focus for some children. When I read as
a child the words jumped and danced about and then went out of
focus; bright light stressed me out; I had migraines; I suffered from extreme fatigue; I had panic attacks; sometimes I
had double vision. sometimes I could not see faces. The world
was a very frightening place. I had to learn how to cope. My thoughts are that if it makes a child feel safe for someone to support their hand while they hit a few keys on a key board them give them the opportunity to do so.
It is rather more complex than sitting in a test situation and
getting a few answers wrong – rather like sitting an exam yourself – everything you know can go out of your head you are
so nervous. Or the lights could be stressing you out. Or the
room could be unfamiliar. Or you go into flight mode or freeze
mode. Or your hand goes dead and you cannot feel it. Or the
words do not come or your mind goes blank. Or you are just so
damned scared you drown in fear.
Richard
Well speaking specifically to Richard here, I am aware of where FC originated, do you know this website
http://home.vicnet.net.au/~dealcc/Anne2.htm
FC did originate with CP.
I have known and do know a number of non verbal CP people, who have used a variety of augmented communication techniques and equipment from alphabet board, to bliss symbols to speech synthesis a la Stephen Hawking.
My mum actually used a possum device to type towards the end of her life. In case people don’t know what that is, it is a microswitch that controls a scanning device, you stop it when it gets to the right letter, takes a long time to type with that.
That is not the same as FC, and my problems with FC is the abuse of it, which I do believe is what the experimentation has exposed.
Do you know what really makes me angry about assumptions of non verbalism, and that is the idea that it is an autistic thing only, that is an example of supreme arrogance.
Not only my speech, but my language can break down, particularly under stress, at least I am fortunate (if you can consider such a thing fortunate at all) in that this is now recognised as a problem with me, the most loquacious and hypervocabulariosly endowed notwithstanding. At last those who hear me fluent have seen me struggle even to write words.
Rose don’t you dare assume that of me, only I have a right to assume that about myself, but then you see I am grey of hair these latter days walking on three legs riddle of the sfinx (bugger the spelling) notwithstanding.
Gandalf the grey, Gandalf the white, na, Gandalf the old fart.
Again mostly tl:dr
But if I may suggest something. Whilst I am now rather on the fence with FC. I do believe teaching a non-verbal to communicate Via typing to be much more crediable than FC. Mostly there is no grey area that the facilcator is doing it but the autist.
Laurentius Rex,
Yes, I am familiar with the website. I was sorry to hear about
your mother.
I once met a person on the spectrum who had a panic attack but
focused if you gave them an object to touch that they were familiar with. Language was no use but the familiar feel of the object stopped the panic.
If you at times struggle to write words think what it must be like for people that struggle to write or type words – all the time.
Perhaps the touch/support in some way focuses them – I am not sure – just an idea. But perhaps if they are given the opportunity and became more familiar with typing then maybe it would become easier. Many however are at a disadvantage because many will never had had the opportunity to learn formal reading or writing.
Children in mainstream practice writing every day and they all make progress at a different rate. Many children with disability labels have never had the opportunity to learn the basics – they have no point of reference. Others, like myself, are somewhere in between.
There are many good honest people who have been involved in FC
and I think we should try to look at FC with new eyes, eyes that are open and not blinded by prejudice and discrimination – as is
the case for many who believe that children on the spectrum
cannot communicate. I see myself as a survivor – one of the
walking wounded – others did not survive the system.
Richard
Laurentius:
Can you assume my assumption was about you? Isn’t that presumptuous ?
I wonder what “sumpt” derives from? There’s a whole lotta sumption going on around here…
In truth, you are brilliant. Can I have my dollar now?
Jypsy: The videos were great. That, to me, is science. Something you see with your eyes, observe. Something repeatable. Alex did a lot of it himself. Even at that young age it isn’t presumptuous to see he had a degree of competence, although he might not have gotten the whole she-bang. (The j-e-l-l-o was so sweet!)
Richard: Do you have a website? I so appreciate your input.
too lazy and depressed to read the comments.
I think FC today is different from the FC that was a scam. There was a specific case of FC that was a scame, and it’s that blemish, I think, that means we don’t have enough research. Kind of how the blemish of autism = gut problems meant it took forever for me to get my ped to look at my son’s gut problems that had nothing to do with his autism… That said we need more research. right along with more research on sign language and pecs. We actually have done a significant a mount of research into vaccines. I’m pretty sure past FC research wasn’t geared towards people with autism specifically.
I think if you call it AAC (sp?) a greater number of people accept it….
Since this site seems to be the go-to place for ringing declarations of principle, and as I would probably fall into the category Michelle Dawson describes as ‘FC promoters’ who have ‘berated’ her –
In reality I’ve been berated (at length, and to extremes) by some FC promoters, for taking a science- and ethics-based position re FC…. because I think autistics deserve recognized standards of science and ethics…
I’d like to say for the record that I haven’t berated Michelle for requiring high standards, I’ve criticised her for not living up to them, in this one instance, herself. Much as I admire Michelle, and much as I appreciate her work, when it comes to FC she has
(1) relied on secondary or tertiary sources to source her assertion that FC is anti-science, and
(2) neglected to read the scientific literature that supports it (for example, Cardinal, D., Hanson, D., & Wakeham, J. (1996). An investigation of authorship in facilitated communication. Mental Retardation 34, 231-242)
I’m not sure, come to think of it, that she’s actually read the journal articles that attack it: I’d be surprised if she didn’t have some comments about their methodology, if so.
Read more: https://leftbrainrightbrain.co.uk/?p=3283#ixzz0TDMZq9Wj
Moving right along, another form of evidence that FC (or, as I prefer it, FCT – Facilitated Communication Training) works, at least for some, is that a number of people who were for many years able to communicate only through FC have now attained independent communication (see the video here – http://www.inclusioninstitutes.org/fci/). You can now ask them ‘Was what you were saying when you were facilitated what you meant to say?’ and they can, and do, say ‘Yes.’ Just for the moment I’m going to sit on that, leaving aside the question of how large a proportion of the speech-disabled population this applies to and the question of whether FC is, even so, the treatment of choice. Can anybody who want to join the FC debate first say whether they believe that anybody has ever communicated successfully using FC? At the moment in the debate we’re trying to juggle the arguments of total skeptics and partial critics (and – a much larger group – those who fuzzily remember having seem something somewhere sometime about FC and fill in the details from their imagination), which complicates the issue even further
jypsy,
I know you stated you are not a message passer, but could you make an exception and be a message passer to Michelle Dawson?
When Kev wrote to Michelle “Take it elsewhere unless you have something on topic to say” it seems Michelle only processed the first part of the sentence and missed the part “unless you have something on topic to say.” It appears that concerning the very specific statement by Chris Borthwick about the position of Michelle Dawson on FC that Michelle Dawson wants to respond but feels she cannot post at all on this thread, as she just posted on her own discussion board.
So could you please tell Michelle Dawson that she can post a comment which is on topic about FC?
I think it is very important that Michelle Dawson should, as she wrote she wants to do, respond to Chris Borthwick, a Facilitated Communication Promoter, in the same place where he posted his comment – here.
Art
Kev said:
Amazing double standards you have, farmwife is allowed to be off-topic AND lie, gossip, misrepresent and insult people on top of that.
The trouble is we can’t expect to have it both ways. I am using the royal “we” here not just to refer to neurodiversity advocates, but also anti vaxer’s that is to say on both side of the argument, we cannot demand a higher standard of proof of the opposition than we demand for ourselves, at the risk of attracting Michelle’s ire in paraphasing her Michelle is correct that we should always take a scientific position.
Paul Offit, that prophet of rationalism, is pretty scathing about FC, on the other hand we accept what he writes about the weight of evidence that vaccines are safe within the normal margins of probability that when something bad happens it is rarer than the event the vaccine is otherwise forestalling.
Some people do fall ill after vaccination, that is undeniable, and I think it is also undeniable that some people do go on to independent typing after FC.
What I do question is the number and the claims of FC’s more outrageous proponents.
There is now in English law a new rule regarding mental capacity, that it should always be presumed unless there is strong evidence to the contrary.
I would like to think that if for any reason I were to permanently lose my speech through either accident or trauma that I would be given a computer to attempt communication, however I would prefer a scanning device like my mum’s possum in the first instance. I think we need to be clear as to the differences between facilitated communication and augmented communication and be very sure that no-one is denied augmented communication because of the bad reputation that FC has got.
Of course it would not be beyond the wit of anyone to invent an augmented communication device, that denied the users input and randomly threw out it’s own phrases. A sirius cybernetics production perhaps, however lets not forget what it must be like to be aware that someone is manipulating what they want to say, that happens with the parents of completely normal kids as often as not, where a mom will correct her child’s phrase and say “he didn’t meant to say that, what he really meant was .. blah blah blah.” Then unconscious temptation to do that is going to be so much greater with FC, there need to be rigorous checks and balances to ensure that is not happening.
Kowalski,
Although I disagree with some of what farmwife commented, and I also agree with some of it, I think Farmwife’s comment on this blog entry was on topic. I think your claim that it was off topic etc. is completely off topic.
Do you have anything specific to comment that is on topic? (example – in response to farmwife, jypsy wrote ““FC” and “hand over hand” are not the same thing.”)
Farmwifetwo,
My 37 year-old son Ben who is completely nonverbal with an official diagnosis of autism at age 5, does not write epics but does write with his type of faciliated communication long philosophical essays that have been published in several places on the internet and in several books. My son never crawled but went directly to walking and then running, which has been documented to be so for many persons with autism and also apraxia. I realize FC has not been scientifically validated but my son’s walking and running without crawling first is “validated.”
Art
jypsy,
“FC is not a “communication device” and the “out loud” isn’t what “FC” or AAC is about.”
My apologies. The computers that the school where my child attends have demonstrated for me “talk” after the child writes the word. The teacher called it a “facilitated communication device.” Thus, my understanding of FC. The product magazines I have looked also used “facilitated communication device” to label talking/typing computers.
As per doing homework using supportive assistance (like in the video), that is a different type of “facilitated communication” from what I’ve been exposed to and my previous comment do not apply. Your son is obviously applying himself, even if he’s not completing the work without assistance.
Richard,
“Stephanie, some children/people with poor motor skills may never reach independence – so having been unable to communicate myself I would ask the question – do we as a society deny children/people the opportunity of communication?”
I realize that and certainly would not advocate denying the opportunity to communicate, but also recognize that the integrity of the facilitator is a factor. Is a human facilitator the only option, or could the devices be designed in such a way to compensate for poor coordination and muscle strength?
The right innovators could come up with a different solution that may remove the potential for facilitator bias.
I know you stated you are not a message passer, but could you make an exception and be a message passer to Michelle Dawson?
*No*. Please leave me alone.
Kevin,
Would it have been difficult to email Michelle Dawson to ask about her position regarding FC before writing your blog post?
It would have eliminated a lot of arguments going both ways.
Alain
“Like I told you Michelle, this ain;t the Michelle Dawson show. Take it elsewhere unless you have something on topic to say.”
Ouch! Actually, Kev, it kind of is, since you wrote about her in your post. Seems like that made her response to what you wrote on topic, too.
From Michelle’s reaction to your saying that you thought she supported FC, I’d conclude that she has very strong opinions in the opposite direction. Since you have ambivalent feelings about FC based on your perception that certain people like Michelle support it, I’d think her response would be of interest and that you might like to hear more about what she thinks on it. Although you’ve said she can still post here if she has something “on topic” to say, your message of unwelcome I’m sure makes it hard to do so.
What Anne said.