Autism Blog - Facilitated Communication – where does a neurodiverse skeptic stand?

06 Oct 2009

Author: Kev
Comments: 172

Facilitated Communication – where does a neurodiverse skeptic stand?

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.

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Comments

172 Responses to “Facilitated Communication – where does a neurodiverse skeptic stand?”

Jen
October 6th, 2009
11:48:50

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?
Dawn
October 6th, 2009
12:00:10

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.
Jeff Gitchel
October 6th, 2009
13:37:50

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.
Joseph
October 6th, 2009
13:40:28

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.
farmwifetwo
October 6th, 2009
13:46:27

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.
Rose
October 6th, 2009
14:46:59

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/pu.....d_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.)
Laurentius Rex
October 6th, 2009
15:09:48

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.
Rose
October 6th, 2009
16:35:21

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!
Badger3k
October 6th, 2009
17:17:57

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.
Michelle Dawson
October 6th, 2009
17:28:50

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.
Kev
October 6th, 2009
17:41:22

Thanks for the correction Michelle.
Michelle Dawson
October 6th, 2009
17:52:48

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.
Rose
October 6th, 2009
17:59:36

I don’t think I’m talking about FC…nevermind!!
Tweets that mention Autism Blog - Facilitated Communication - where does a neurodiverse skeptic stand? « Left Brain/Right Brain -- Topsy.com
October 6th, 2009
18:04:18

[...] This post was mentioned on Twitter by autism_hub, Autism Hub and Michelle Dawson. Michelle Dawson said: Autism advocacy standards: Kev Leitch grossly misrepresents the work of an autistic (me) http://tr.im/ASJB See the comments. [...]
Kev
October 6th, 2009
18:09:06

Have just done that very thing Michelle :)
William Carman
October 6th, 2009
18:33:30

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.
Dedj
October 6th, 2009
19:01:48

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.
Richard
October 6th, 2009
19:14:33

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”.
VAB
October 6th, 2009
19:24:54

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.
Michelle Dawson
October 6th, 2009
19:28:53

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.
Dawn
October 6th, 2009
19:38:00

@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?
David N. Brown
October 6th, 2009
19:49:35

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.
Kev
October 6th, 2009
19:59:39

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.
jypsy
October 6th, 2009
20:31:16

“FC” and “hand over hand” are not the same thing.
Arthur Golden
October 6th, 2009
20:42:05

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
Kev
October 6th, 2009
20:58:20

Like I told you Michelle, this ain;t the Michelle Dawson show. Take it elsewhere unless you have something on topic to say.
Richard
October 6th, 2009
21:32:22

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
Dawn
October 6th, 2009
22:29:35

@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.
Stephanie
October 6th, 2009
22:40:45

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.”
jypsy
October 6th, 2009
23:25:15

@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.
Rose
October 6th, 2009
23:34:16

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.
Rose
October 6th, 2009
23:36:21

I meant, I would rather assume a person to be brilliant.

Brain Farts…old age…
Richard
October 7th, 2009
00:06:44

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
Laurentius Rex
October 7th, 2009
00:08:56

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.
Laurentius Rex
October 7th, 2009
00:14:30

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.
NightStorm
October 7th, 2009
01:15:23

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.
Richard
October 7th, 2009
01:26:55

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
Rose
October 7th, 2009
03:20:15

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.
navi
October 7th, 2009
03:38:54

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….
Chris Borthwick
October 7th, 2009
04:07:00

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: http://leftbrainrightbrain.co......z0TDMZq9Wj
Chris Borthwick
October 7th, 2009
04:17:55

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
Arthur Golden
October 7th, 2009
08:33:15

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
Kowalski
October 7th, 2009
08:48:20

Kev said:

Like I told you Michelle, this ain’t the Michelle Dawson show. Take it elsewhere unless you have something on topic to say.

Amazing double standards you have, farmwife is allowed to be off-topic AND lie, gossip, misrepresent and insult people on top of that.
Laurentius Rex
October 7th, 2009
08:54:36

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.
Arthur Golden
October 7th, 2009
09:47:48

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
Stephanie
October 7th, 2009
09:55:43

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.
jypsy
October 7th, 2009
11:40:18

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.
Alain
October 7th, 2009
17:06:16

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
Anne
October 7th, 2009
19:39:11

“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.
jypsy
October 7th, 2009
20:14:55

What Anne said.
Benjamin Ethan
October 7th, 2009
21:02:58

Since no FC users have identified themselves as making comments here, I will identify myself as an FC user, known to 3 others on this thread. FC is a tool, but a crucial tool to allow autistics and others who cannot communicate independently to make important life decisions. Without this ability to make life decisions, an autistic is not really a person, no matter what any tribunal states. Since facilitators are aware of and on guard for so-called facilitator influence, in the decision-making process it is ubiquitous outside influence that is the real problem.

If autistics or others do not have independent communication, then facilitated communication is an essential human right that all autistics must demand. I wish FC was scientifically validated 15 years ago when I had an important life decision to make, but would you really force me to wait 15 years and still be waiting? I protest such cruel treatment no matter how ethical one thinks they are being by upholding the idolatry of Science.
Kev
October 7th, 2009
21:21:36

Anne, no the subject is not Michelle Dawson, its FC. I made a mistake in mentioning Michelle at all as, as always happens when you do, you run the risk of upsetting Michelle into ever increasing umbrage. I made a mistake, which when brought to my attention I noted and fixed. At that point Michelle could simply have accepted that but didn’t and carried on taking umbrage for no good reason.

I won’t be part of the Michelle Dawson pity party. Neither will this blog. The discussion about Michelle ends here. Further comments will simply be deleted.
James Todd
October 7th, 2009
21:26:27

Being “neurodiverse” or anything else should have nothing to with assessing the validity of facilitated communication. The evidence for FC is not there. The evidence against it is overwhelming.

Over the last 30 years or so, depending on when the formal origins of FC are dated, we have seen exactly zero properly controlled, peer-reviewed studies showing that FC has worked reliably for even one person. Dozens of studies—summarized in tabular form in Green (1994) and Mostert (2001) and reviewed in many other venues—have demonstrated that FC fails to produce useful literacy even under the most benign experimental conditions. Other than FC not working, the most robust finding in the research literature is that the facilitator authors the output. The critics of these studies complain about external validity—the studies are too different from real life. Yet, in many of these studies the subjects seem to type with no problems, being asked the same kinds of things they might be asked in school or home, merely unaware of what information is being fed to whom. Only when the analysis shows problems do the objections start.

The proponents of FC, in contrast, have yet to publish a single, properly controlled, peer-reviewed study showing that their method works. They are fond of citing studies like Cardinal et al. (1996). But, in citing Cardinal et al., they rarely (if ever) point out that out of 3800 recorded trials, fewer than 10% correct answers were produced. They especially don’t care to mention that those correct answers were outnumbered by correctly spelled wrong answers—a fact that suggests that one of the main operative features of the procedure was the induction of guessing by the facilitator. An expected retort might be, “Well what about the nearly correct answers that weren’t included in the count?” To that we might counter-retort, “It sure is hard to interpret the significance of those when the authors failed to tell us how many identifiable but wrong responses there were in addition to the hundreds of correctly spelled wrong ones. Do you want to go to court and say a man should be in jail based on evidence such as this?” The list of problems in Cardinal et al. does not stop there. We also find inexplicables such as the experimenters unnecessarily supplying the list of answers to everyone, and making sure that the experimenter and observer in the test settings were not blind to the answers on each trial. Of course, Cardinal et al. did not include a test for facilitator influence.

FC advocates sometimes also cite in their favor controlled “validation” studies by Sheehan et al. (1996) and Weiss et al. (1996). The interesting thing about Sheehan et al. is that the supposedly “naive” facilitators were given ongoing feedback on the accuracy of the responses by the experimenter during the test sessions. It probably need not be mentioned that the experimenter knew what the answers should be. Are we really supposed to attach credibility to a study in which the subjects were being guided to the answers by contingent feedback while the experimenters, astoundingly, seemed to believe they were addressing the problem of facilitator control by simply asking the facilitators to avoid doing it? Here is what they said: “The presence of the original facilitator at the information disclosure sessions raises a question about the possibility of cuing. With this awareness, we made significant efforts to disallow both obvious and subtle cuing, such as voice intonation, head nodding, bodily cues, visual gaze, and facial expression that would inadvertently shape or prompt a desired response from the participant. ” (p. 99). There was no need to worry about inadvertent cueing. Cueing of that kind couldn’t have made much of difference given that cueing through direct instructional feedback was built into the experimental procedures. Of course, Sheehan et al. did not include a test for facilitator influence.

The oft-cited Weiss et al (1996) study may be more interesting from an empirical standpoint. A 13-year-old boy, who could supposedly do honor-roll level work with FC at school, was barely able to pass a second-grade-level recall test with FC after being presented the information multiple times in multiple modalities, and after practicing answering the questions with the main experimenter serving as facilitator immediately before the test sessions. What is especially interesting is that only the wrong answers raised concerns about facilitator influence. Why not the right answers? What is even more interesting is the admission by the authors that the procedures only seemed to start working when the experimenter first practiced the items with subject then conducted the test sessions: “During that time we had begun employing the consolidation [practice] phase used in the current protocol and had the experimenter remaining in the room presenting questions during the test phase.” (p. 228). I can just hear Robin from the old TV series saying: “Holy ‘Clever Hans,’ Batman! A fatal flaw like that invalidates everything!” Of course, Weiss et al. did not include a test for facilitator influence.

Of the few remaining allegedly controlled studies “validating” FC often cited by FC advocates, we find the same kinds of problems. A sampling should suffice. Calculator and Singer’s (1992) test of FC with the Peabody Picture Vocabulary Test only seemed to work when Calculator did it. At least three attempts by others have failed. Of course, Calculator and Singer (1992) did not include a test for facilitator influence. It was probably helpful for Bundschuh and Basler-Eggen’s (2000) study that the facilitator had also created the stimulus materials for the tests. Of course, Bundschuh and Basler-Eggen did not include a test for facilitator influence. Emerson et al. (2001) differed from their FC advocate colleagues by conducting objective tests FC and finding all the typical problems—only to dismiss those findings and treat the FC as genuine. That is, guesses about whether information might have been unknown to facilitators was granted more credibility than objective tests. More incredibly, just one or two suspected “communications relevant to self” over a span of five or six years was considered evidence of independent communication. We can be forgiven if we hoped for more.

As for the ethics of FC, FC may be the only widely used developmental disabilities intervention for which there have been more imprisonments due to false allegations of rape than objectively demonstrated successes. To use or recommend something with a record like that is irresponsible in every possible way. Just last year, a man in Bloomfield Hills Michigan spent 80 days in jail due to false statements made through FC that he (and his wife and son) had been raping his daughter for years. Officially he was put in jail because of facilitated claims that he had violated the court’s order not to visit the child in foster care. The word of an Orthodox Rabbi, in whose house the daughter was staying, was rejected in favor of claims facilitated by a teacher at school. If you don’t believe FC is accepted by the courts, you are wrong. The Michigan court accepted the FC as valid testimony even after every single expert witness, including even the FC advocate, had repudiated the typing. The court accepted the FC even after finding out that virtually none of the verifiable information in the FC transcripts was accurate—wrong names, non-existent relatives, non-existent locations, a dead dog raised up and given a new name, a Jewish family issuing Christian warnings about damnation. The court accepted the FC after two totally failed message passing tests done on two different days. Some answers were supplied—just not to the right questions! Moreover, the evil, biased “naysayers” Howard Shane and myself were not allowed to do any validity tests at all. The failed tests were actually done by the prosecutor who talked about how she, like FC advocates, “presumed competence” and claimed to find FC completely credible. Of course, all this led to the girl’s younger brother being interrogated by the police for almost two hours, told repeatedly and falsely that there might be video tapes of him participating in the rape of his own sister. The original facilitator in that case is still promoting FC.

In the midst of all this, testimonials abound—now often in videos and internet postings, although the journal “Intellectual and Developmental Disabilities” retains a soft spot for non-empirical articles about FC. There are plenty of FC Stars for which amazing feats are claimed: college degrees, scripts, awards. But anyone can make claims. And the fact that lots of people, and even universities, have been fooled by FC is not proof. There are supposedly even a few “independent communicators” who are “independent” except for the person sitting there holding the keyboard, standing behind guiding each arm toward the computer, or providing other cues about what to type. There are, however, no objective validations published for what are essentially medical miracles. In fact, as we saw in the target article that started this thread, the FC community has wised-up. To their credit, early on, people doing FC would participate in scientific tests—confident in their methods, but with enough courage to risk disappointment. Now the standard is a huffy refusal to even try to objectively validate—often accompanied by a statement that the tests are explicitly designed to fail or are insulting. Designed to fail? Asking people who can supposedly use FC successfully in school or college to name some pictures or remember some information for a message-passing test is hardly making things difficult. Insulting? Given that FC has completely failed in the scientific arena, why would anyone expect anything but skepticism about it? Reports of children suddenly typing “I love you, Mommy!” in their first facilitation session certainly invite concern about fraud and exploitation. Seeing a girl’s hand used to make obviously false claims about years of rape should bring a note of soberness to the proceedings. The refusals of FC advocates to test their method objectively, especially given the risks involved and the extravagance of the claims made, only raises suspicions that they have something to hide.

If FC worked, it would work. Our journals would not be full of failed attempts to find “hidden literacy.” We would not encounter facilitator control practically every time we looked for it. FC advocates would not have to rely for “proof” on gushing testimonials and the largess of credulous feature reporters looking for a touching disabilities story to feed the current hunger for all things autism. If FC worked, those inclined toward using it could pack the journals with methodologically sound, data-based records of successful implementations, each one with a credible assessment of validity just in case a facilitator was going rogue and controlling the output. But FC doesn’t work. There is no good reason to believe in it, neurodiverse or not. What should be believed is that people who might otherwise learn to speak for themselves and live independently are being led around by others not getting the help they could use. They are not even accorded the simple dignity of being accepted for who they really are, even if that is being an individual who might never communicate as we are doing here or respond to the world in typical ways. Families with autism, often desperate for something or anything to help, are being misled by advocates of technique that has failed every test of science, not really getting to know their own children, convinced that a fantasy of their own unconscious making is the person they love. It is a tragedy that in the 21st century we are still dealing with this.

James T. Todd, Ph.D.
Richard
October 8th, 2009
00:49:55

I personally am able to speak the words before or as I type them. I learnt to write as a child using fc (support) and I now am able to both write and type independently. At the age of five my hands were not strong enough to hit the keys of a child’s typewriter other than with support but at the age of fifteen on a canon communicator I was able to type independently – albeit a gap of ten years of not typing. How many children that were denied
an opportunity to type with support would have been able to type
independently ten years down the line? We will never know before they were denied communication aids and the necessary funding.

As I stated I had the building blocks in place to facilitate my language development due solely to the efforts of my mother who
believed in my ability. This is not a fantasy – it is fact. And
many parents have worked towards the same end – intelligent, caring people.

I was denied an equal education on grounds of disability as a child despite a teacher who have worked on my movement over a
number of years and a top Consultant in the area of autism stating that I was not retarded. I spent ten years in the pure hell of special education – demeaned and humilitated. I stood no chance. The children I was at school with stood no chance. We became dehumanized by a system that did not work. I think the tragedy is that in the 21st century we are still in this dreadful position where people are denied absolute equality. It should be a basic fundermental human right that people have a right to communicate by their means of choice. I understand that there are studies that have proved FC is valid but I have not read them as I do not need to because I have been typing for seventeen years
determined to prove to people who tried to but me into a box
marked ‘disability’ that I have ‘ability’.

Richard
Kowalski
October 8th, 2009
00:58:54

Arthur said:

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.”)

Farmwife made a claim about Estee Klar, which misrepresents what she’s all about.
There is no chance to ever look at this blog without some lies and misrepresentations by FW2.

Btw, don’t tell me to stay on topic.
This blog is disablist to the core, and as soon as disabled people aren’t treated like shit here, I will maybe bother to join a “debate”.
Richard
October 8th, 2009
01:14:32

Sorry about the typing mistake people – should have read: “humiliated”.

Richard

Contributing author to “Autism and the Myth of the Person Alone”
by New York University Press. Writer, Poet and Artist
Richard
October 8th, 2009
01:32:57

Rose – my apologies for the delay in replying. It was very late in the UK and no I do not have a web site. I am just an ordinary guy who holds a strong belief in social justice.

Richard
Arthur Golden
October 8th, 2009
02:36:54

Professor James Todd wrote:

“What should be believed is that people who might otherwise learn to speak for themselves and live independently are being led around by others not getting the help they could use. They are not even accorded the simple dignity of being accepted for who they really are, even if that is being an individual who might never communicate as we are doing here or respond to the world in typical ways.”

I have never seen any verifiable evidence of the existence of these “people who might otherwise learn to speak for themselves and live independently.” The vast majority of people that were possible candidates for the use of Facilitated Communication over the past 15 years have instead been provided ABA programs designed by behaviorists such as Professor James Todd. While it is true that my then 22 year-old son could not speak then and cannot speak now, I am unaware of any nonverbal adults who achieved speech through ABA even after 15 years. So, could Professor Todd please provide me such verifiable information, with contact information so I can arrange such services for my own now 37 year-old son?

Arthur Golden
Rose
October 8th, 2009
02:45:15

Thank you, Richard. You situation reminds me so much of a student I had that I only began to help. It upsets me I didn’t do more.

I still have a “blogspot” website (free) where I try to put down info to give to her mom some day. I may copy a few things from your posts here, with no discussion on my part, if that’s okay.

Thanks for the book info.

Rose
Arthur Golden
October 8th, 2009
03:15:32

Kowalski wrote: “Farmwife made a claim about Estee Klar[-Wolfond}, which misrepresents what she’s all about.”

which I checked out is a reference to:

farmwifetwo wrote: “NOW… if someone gets handed a keyboard and claims their child is a genius – add Estee Klar[-Wolfond] in this group – is blatantly lying.”

Thanks for providing verifiable information, which I am checking out. I should disclose that I think I am in the same group as Estee Klar-Wolfond (if the statement of farmwifetwo about Estee Klar-Wolfond being in such a group is accurate) and I know I am not blatantly lying. Of course, I could be delusional, which I am also checking out again, after 15 years of thinking that my “child” (now age 37) is a genius. I am not too concerned because over the past 15 years, thousands of people have met my son here in Israel and almost all of them seem to think my son is a genius. My son may not have pursued his career at a major American university – of clearing off trays in the cafeteria – but I think his time is better spent studying Torah and through Facilitated Communication writing philosophical essays printed and distributed to tens of thousands of people throughout Israel, besides being posted on several internet sites and published in several books (now mostly in Hebrew, so I doubt too many of this blog readers have seen them).

But Kowalski, I think your choice of words, which I will not repeat, takes away from the very valid point you just made about Estee Klar-Wolfond. Since it is off-topic, I will not explain further, but I think Kev’s blog is much better in its treatment of persons such as my own son Ben than is Michelle Dawson’s blog and discussion board.

Arthur Golden
Kowalski
October 8th, 2009
06:12:07

I didn’t make “valid points” or provided “verifiable information” about Estee Klar, all I’m saying is that if someone makes a claim about someone they should quote a source. Or else it’s just gossip.
Morgan
October 8th, 2009
06:26:40

“where does a neurodiverse skeptic stand?”

Once again, I stand for checking your facts before posting them.

I guess you don’t.

Morgan
Kev
October 8th, 2009
08:41:15

Morgan – anything constructive to add about the FC debate? No? Then I guess you stand for trolling….?
Richard
October 8th, 2009
12:05:39

Rose,

I expect you did the best you could at the time, and yes that is fine. The book was an international effort with contributions from people who type or write to communicate independently but
began with support.

Richard
Tom Smith
October 8th, 2009
18:47:12

I’m a long time internet advo for autism and Supported Communication (SC) (formerly known as FC) and am a partisan of Art and Ben Golden. I worked in autism treatment for 30 years in residential and with other populations.

Comparing the vaccine controversy with that of the SC controversy is comparing apples and oranges in a scientific sense with vaccines being physical phenomenon and more accessible to science and SC being social and much less accessible.

I used SC in a free and open way for two years in residential in the early Nineties producing the facilitated book “QIM Tunes”...an interview with five severe autistic men. James Todd here is way off base with his concerns about SC getting in he way of any other treatment. In fact SC improves the likelihood of the effectiveness of other treatments, including speech development where it is possible. Neither Todd nor I have scientific proof of this mainly because Todd and his threatened behaviorists have suppressed research and use of SC.

OK, you may ask what is the difference between FC and SC? The official FC people, like the behaviorists, have relied on pseudoscience to support their position. Neither FC or behaviorism has much efficacy scientifically and by promoting either as scientific opens up abuses by both. I could write a book on how behaviorists abuse science and an essay on how the official FC people do. In contrast, SC relies on objective applied treatment modalities and which work better in combination or individually. As a “worker” in this field for many years with a keen eye on science while knowing it’s limitations in an applied way, I know it’s nonsense to rely too heavily on science and these people only do it to appease the clueless, usually parents and administrators. In other words, they do it for money.

The severe autistics are in fact geniuses. Autism will eventually be seen as symptomatic of genius and not retardation. I have no doubt about that. They also have special sensory abilities which effect their communication and make it somewhat different from ours. All we need to do is use SC and learn how to use it FROM THEM. They are perfectly happy and know it serves their interests that in this process SC be “invalid”, meaning used with extreme caution in the “functioning” world until we understand better the method of SC and their natures. In the process caretakers get to know them and have fun doing so while the method itself provides the therapeutic effects on the autistics that eliminate their most difficult behaviors. In the longer run, SC and the auties will provide humanity with the greatest insights and discoveries in history. Oh yeah, these guys are THAT bright.
Laurentius Rex
October 8th, 2009
19:23:07

In other words Tom, you are as woo and out there as the homeopaths, with your invocation of quasi magical explanations, and invocations of

Yes I am aware of Arthur C Clarkes 3 laws, and yes I am often critical of the practice of science, however the fact that something is presently inexplicable does not mean that a sufficiently rigourous methodology could not discover how it works. It is certainly no excuse for not submitting to proper research.

However I fear very much that you are so partisan that you are delusional and therefore committed to your own view contra all reality.
Morgan
October 8th, 2009
20:13:26

Kev,

You can “guess” anything you like.

As an adult, you are capable of doing your homework before writing publicly. To choose otherwise is juvenile and reckless (especially when other people’s professional reputations are at stake).

There is a well-established body of scientific literature on the subject of FC. There is also an enormous body of anecdotal accounts. If I were you, I’d focus on the former.

Morgan
Joseph
October 8th, 2009
21:12:24

however the fact that something is presently inexplicable does not mean that a sufficiently rigourous methodology could not discover how it works. It is certainly no excuse for not submitting to proper research.

Who are you, and what have you done with Larry? :)
Kev
October 9th, 2009
07:59:35

Morgan – please cease the off topic trolling, but thanks for the advice on FC. Can I ask what your interest in the subject is?
stanley seigler
October 9th, 2009
12:02:09

re: But FC doesnt work. There is no good reason to believe in it…It is a tragedy that in the 21st century we are still dealing with this. (James T. Todd, Ph.D.)

The tragedy is: it was not dealt with in the 20th century…todd-etals do a criminal disservice, injustice, to non verbals (and others) on the spectrum…they deny “seeing is believing” science…they deny our children and friends their human/civil rights…they condemn children to Bettelheim’s Empty Fortress…

why deny anecdotal evidence that has been around since at least the mid 60s…when the potential is freedom for so many…to protect their livelihood maybe…

Rimland (1991?) say:

“Several very dramatic cases of QBIs [quantum behavioral improvement] were reported in the NY times and elsewhere, in the mid-1960s, in accounts of the work of pediatrician Mary Goodwin, who used a primitive computerized teaching machine, the talking machine, to instill a bit of language into a number of severely handicapped autistic children.
[...]
“Several years ago renowned physicist Arthur Schawlow reported the remarkable results he and his wife had observed not long after providing their then 27-year-old son with a small hand held Canon communicator [...]
“Other methods should be tried until, hopefully, communication ability and perhaps QBIs can be achieved…You can be sure the editors of ARRI will keep its readers informed of developments in this important field.” http://www.autismwebsite.com/arri/v021/page3.pdf

The hard copy from the goodwins talking typewriter was/is similar to that of FC typing.

The latest of numerous cases of this phenom is Carly.
http://www.youtube. com/watch? v=a1uPf5O- on0&feature=related

seems the todd-etals…the publish or perish crew’s time/energy would be better spend on study/research into this innate ability some (?many, ?most, ?all) on the spectrum seem to have…vice viciously attacking a painfully obvious phenomena…and it’s ironic it would facilitate their ABA livelihood.

call it FC or whatever…a rose is a rose.

stanley seigler
Arthur Golden
October 9th, 2009
13:35:29

I have known Benjamin Ethan since before he began to use Facilitated Communication. Several commenters here belong to a private yahoo!group where they were told much more about the connection between Benjamin Ethan and me, but such private information should not be disclosed in public. Benjamin Ethan just told me through FC:

“Say ‘I am one of his facilitators and no more.’ ”

In the original blog entry, Kev wrote “Or is there another option?”

In May 1994, using his type of Facilitated Communication, then 22 year-old son Benjamin Ethan (“Ben”) made a major life decision. At his request, Ben and I went to Dr. Howard Shane on May 3, 1994 to try to scientifically validate his personal FC. Dr. Howard Shane used his usual procedures and could not validate Ben’s FC, as documented in a 5 page report we received from him several weeks later. Now over 15 years later, FC has still not been scientifically validated.

However, Ben and I decided to proceed to try to implement his major life decision, which I feel was very successful for Ben. Should we have waited until FC was scientifically validated? If we did, we would still be waiting. I know this report is not a peer-reviewed article of a scientific experiment and is only an “anecdote.” But this anecdote is a real human being with a divine soul whose life is not going to sacrificed on the altar of the “Idolatry of Science” (using the expression which originated with Ben – I often follow the lead of this person who does not have an academic high school diploma even though I have a Juris Doctor from Harvard Law School, and Ben felt humiliated this week when Michelle Dawson thought his blog comment was too sophisticated so it might have been from me using his email account and she deleted it).

Benjamin Ethan and/or I hope to comment more in a few days.
Joseph
October 9th, 2009
14:08:50

Benjamin Ethan and/or I hope to comment more in a few days.

Did that sound kind of creepy to anyone else?

I’m sorry, but I’m one of those “seeing is believing” kind of guys.
Arthur Golden
October 9th, 2009
14:49:53

Joseph,

Already several thousand people have personally met with Benjamin Ethan in Jerusalem and you are invited to visit him too. Fortunately for me, he has others assist him as his facilitator when he meets new people, so you may not meet me.

So why does it sound kind of creepy to you?

Despite your nice biblical name, I presume you do not live too close to Jerusalem. Have you ever met an FC user? If you tell me where you live, I will try to find someone closer to you.
Joseph
October 9th, 2009
15:11:20

@Arthur: I doubt I’ll be visiting Israel any time soon, but if I do, I’ll be sure to drop by. The purpose would not be to prove anything. No uncontrolled observation would. What matters is whether you’ve been tested. I’m sure you would’ve mentioned it if you had.

I’m sure you’ll understand that I have absolutely no compelling reason to believe you, whereas there are tons of documented reasons not to believe you.
Arthur Golden
October 9th, 2009
15:38:36

I have to leave my computer right now and I will have to wait 2-1/2 days to get back to you. Have a good weekend.
stanley seigler
October 9th, 2009
19:51:43

re arthur ask joseph: why does it sound kind of creepy to you… and, Have you ever met an FC user

Just wondering if joseph intended to answer and what’s joseph’s interest in FC/autism…on spectrum, parent, family/friend, ABA provider, professional, etc…ie, similar resume to that arthur provided…

Re studies, proof…ie, tons of documentation…

a friend and internationally respected PhD physicist; one of four ASA (when it was NSAC) original presidents; father of twin boys with classic kanner autism (FC users); Bob Frederick’s (died a few years back) comments may help documentation evaluation.

quote:
“I am again jumping in without having followed the complete thread [not current deja vu all over again thread. But two statements got my attention

“Physical scientists are not welcome in the world of the would-be scientists in psychology, psychiatry and medicine, except as naïve clowns who invent or produce all manner of new diagnostic and treatment equipment, nuclear tracers etc., which are then used by MD’s who are given the credit for the advances by the press and public.

“Look at the prescription drug problem. MD’s almost to a man (or woman?PC!!) dole out dangerous poorly tested chemicals hawked by pharmaceutical companies via marketing agents who have no ‘scientific’ credentials and who ‘educate’ the MD with slick brochures and ‘free samples’ to try on unsuspecting patients.

“They give elderly people a panoply of drugs without the slightest knowledge of their interactions, and with minimal follow-up. They push ‘laser’ stuff [bob’s field] without knowing anything about the operation of the basic equipment beyond which buttons to push on the front panel.

“They order lots of xrays without any knowledge of the cummulative damage of even ‘soft’ xrays, and when challenged, will mouth some non sequitir such as ‘you would get more exposure on a flight to New York’ (usually a falsehood.)

“Worst of all are behavioral psychologists and charlatan psychiatrists. The former apply all manner of behavior modification systems to people with innate neurological anomalies without a hope of benefit to anyone (except their own earnings). The latter use powerful drugs to control behavior without proper monitoring, and in institutions to control patients with minimal staff.

“The biosciences in the past four decades have accounted for 99% of the fraudulent research reports. Underpaid chemists, physicists and biologists working in labs run by senior professors, often MD’s but not always, fudged or outright created data sets to publish results and totally unjustified conclusions.

“Psychologists use statistical methods that require large samples to calculate standard deviations and error bars from sets of as few as ten subjects.

“but don’t expect the pseudoscientists to pay any attention, since many of them do not understand observational science as applied to human beings, who are not robots and do not obey fixed laws of behavior.” (end quote)

A little off topic human interest, Bob’s last words to me, “you old fool”...this after I backed out of my garage with the car door open and tore it off…no damage to garage. Bob also a member of the greatest generation…a marine sgt in the pacific…

stanley seigler
Joseph
October 9th, 2009
21:26:21

re arthur ask joseph: why does it sound kind of creepy to you

Do I really have to spell it out? I suspect Benjamin Ethan is basically Arthur Golden, and at this point Mr. Golden can’t apparently even make the distinction in his own head.

I’m not the only one who has noticed this. See the comments in this thread at Autism Crisis.

BTW, anecdotes, testimonials, names, credentials, etc. are not going to convince me in the least. It just won’t work. Even if you show me someone who is an independent communicator who used to do FC, and it is proven all these circumstances are accurately characterized, does this show FC is useful? No, it does not, any more than case reports are sufficient to show that ABA works.
stanley seigler
October 10th, 2009
00:51:25

re: I [joseph] suspect Benjamin Ethan is basically Arthur Golden, and at this point Mr. Golden can’t apparently even make the distinction in his own head.

Surely you dont believe mr golden has multiple personalities…or has taken over his sons personality…

stanley seigler
NightStorm
October 10th, 2009
03:09:39

The severe autistics are in fact geniuses. Autism will eventually be seen as symptomatic of genius and not retardation.

As much as I would love to believe that, and I believe it’s true in some cases, but I am sorry but that is too much of a blanket statement.

Like I said previously, I believe FC can act as a learning method, and hopefully foster independant typing. Which to me is the goal.

I think the reason Neuro-Ds are interested in FC is that it’s a method of communication that allows the autistic person to be themselves without having to be stuffed to the gills with bio-med and force to be something that they are not.
Richard
October 10th, 2009
14:10:56

I think the goal – for myself anyway – was to explore the world
through language. I have had more fun typing and engaging in
conversation that I had trying to converse at the level other
people felt was appropriate for a low functioning person with a ‘disability label’. I decided they could save their sympathy and ‘disability language’ for someone who wishes to be ‘identified by a label’. Grant us the freedom to decide who we wish to be.

I do not identify myself as a person with
autism – which I see as a ‘disability label’ or a person with
cerebral palsy – I see myself as a human being. I do not perceive
myself as part of ‘an autistic community’ – I perceive myself
as part of the world. If one has poor speech skills or no
language one is marginalized by society. One can fight
the establishment to stay out of the box ‘marked’ disability
which I refused to fit into.

Developing language is about self expression and finding
oneself as a person – identifying with society. I will spend my life finding out who I am as a person because life does not stand still it moves on and one grows as a human being with every year that passes. Through language one is able to develop ideas and socialise. One is able to study at any level one wishes to participate at. The children/people who are able to
type with or without support are at an extreme disadvantage – they need all the support they can get not to be penalized
for being different.

Children/adults like myself have been refused the
speech therapy they required on grounds of cost or disability – so one has to ask what option is left for us? One can live the lie of ‘disability’ and become the ‘disability label’ that is pinned on one or one can fight for an equal education and equal rights and an equal place in society – social justice – not just for oneself but for every child that has been denied an equal education and equal opportunities.

I will never be responsible for denying anyone the right to communicate by which ever means they so wish. It is their basic fundamental human right

Richard
Estee Klar-Wolfond
October 10th, 2009
16:39:33

I just received an email from someone about Kowalski stating that I have called Adam a “genius.” That is a misrepresentation and I would like to challenge Kowlaski to cite where I have stated that.

Adam has real difficulties with communication. Some days his typing is independent (in a school context where he has to answer a question, it is easier) and other times he gets very stuck. Yet we hang in there as this modality is useful and we should be using every modality at our disposal.

Last night I watched “Awakenings” for about the 50th time. Everyone can remember the “throwing of the ball” and the idea of “borrowing the will of the ball” for which Dr. Sayer was so criticized. Yet this is what Adam often needs—to borrow my will and the will of others—we all do this through prompts, be it a verbal or a physical one. Let’s just get over it and realize that if we are very honest with ourselves as parents and never delude ourselves (which is the issue, I think, at hand here), all kinds of prompts are needed. “Performance” is inconsistent. This is a part of our experience with autism yet it does not mean that the autistic person is unable or unwilling. Adam is challenged on some days more than others, most definitely.
shanna
October 10th, 2009
17:12:26

I believe if you look at the previous comments you will see that Kowlaski was actually defending you. I believe it was farmwifetwo who insuated that you called Adam a “genius”.
Rose
October 10th, 2009
17:48:05

Estee:

Although I think you want to stay on Kowalskis good side,(hi..,how y’all doin? GREAT BLOG)I also remembered her backing you up.

What is wrong with thinking your child is a genius? Doesn’t everybody??? Hmmm…maybe it’s just me.

What I truly wanted to say is: The similarity I envisioned of Adam to Ben thinking back to working on homework (ie, output).

1) You had to be in the room with him, or he wouldn’t do it.
2) ANYTHING could be a distraction…and his brain was all over the environment, SEARCHING for one!
3) The more you pressured him, the less got done.
4) He was very sensitive to criticism, which could stop him dead in his tracks.
5) He NEVER wanted to talk about school, or read about it,or write about it, or even look at one..

Ben would typically take from 2 to 4 hours to do homework, and there had to be a lot of positive interaction. This must be “common”, as his ADHD psychiatrist was the same way, as well as Fast Eddie, a kid I taught years ago.

These are people who currently understand the English language and are easily able to process and express it. Reticence in output was a common factor. I’m not sure why.
Laurentius Rex
October 10th, 2009
18:21:39

I am not going to insult either Benjamin or Ethan by making presumptions in either direction, I save the rough stuff for Harold Doherty.

What really upsets me sometimes though is the whole debate about a divisible spectrum where LFA and HFA are so so seperate.

Today I had a rather public communication breakdown, there is one reliable blogger here who saw it.

I am not comfortable when that happens, never mind what provoked it.

At one point I had to rely on Mike Stanton to interpret words I had typed onto a screen. Was he going to interpret that properly?

I didn’t have adequate speech, I was back at a very primitive level, tourettic stuff if you understand what goes on.

I’m back now and typing real sentences and words, (h’mm as to what constitutes real words I guess there is always an element of being on the edge with that one upharsinators all :)...)

Perhaps it is even more spectacular when someone who is percieved as highlty articulate, (even if odd) loses it.

Forget this Bollox about genius, all it is is a word after all.
Dwight F
October 10th, 2009
18:40:43

>> Even if you show me someone who is an independent communicator who used to do FC, and it is proven all these circumstances are accurately characterized, does this show FC is useful? No, it does not, any more than case reports are sufficient to show that ABA works.

It is a starting point though, a valid avenue for research. If generally FC produces poor, inconsistant results why do these cases appear different? Was it something within the ASC person? Was it something their facilitator was doing/observing? Is the ASC person right now lying or have tainted recollections? ((Yes, we should seriously consider this.))

At the least this would help sort out if/when/what parts of FC are good for helping with the learning steps of communication (what is the equivalent to hand over hand) and maybe even increasing the reliability/repeatability of the actual messages coming through FC by weeding out the seemingly abundant instances where the message content is dominated by the facilitator rather than the ASC person.
Joseph
October 10th, 2009
19:40:41

It is a starting point though, a valid avenue for research.

Given the state of the evidence, FC proponents have a very high burden of proof, and are also responsible for carrying out research that is clear enough to overturn things, if in fact there’s something to FC. They should not expect science to just carry on normally and eventually validate their views. When a hypothesis fails, as appears to be the case here, science basically abandons that hypothesis. That’s how science works, and that’s the only way it can keep advancing.

If generally FC produces poor, inconsistant results why do these cases appear different?

Suppose these cases represent 1 of every 10,000 persons who’ve ever tried FC. Would that make it a valuable approach with general applicability? I don’t think so.

It also doesn’t matter if testimonials are truthful, either. For example, do you doubt that Victoria Beck’s son actually showed some sudden gains in his speech after he has given secretin? I don’t. It doesn’t prove anything either way.
Clay
October 10th, 2009
23:58:49

Tom Smith said:
“The severe autistics are in fact geniuses. Autism will eventually be seen as symptomatic of genius and not retardation. I have no doubt about that.”

I’m going to second Larry, and suggest you rent a cottage on Lake Woobegone. Especially if you’re still living on the streets!

(Sorry if this if off-topic, but we passed that milepost many posts ago.)
stanley seigler
October 11th, 2009
00:34:54

re: I [richard] will never be responsible for denying anyone the right to communicate by which ever means they so wish. It is their basic fundamental human right …I have had more fun typing and engaging in conversation that I had trying to converse at the level other people felt was appropriate for a low functioning person with a ‘disability label’....Grant us the freedom to decide who we wish to be…The children/people who are able to type with or without support are at an extreme disadvantage – they need all the support they can get not to be penalized for being different.

COMMENT
Richard, thanks and much appreciation for so eloquently saying what i have been trying to say for decades. SADLY and so unfortunately, the fun and hard fought freedom you have, has been…is being…denied many others by the pseudoscientists

those my old fried bob fredericks says: do not understand observational science as applied to human beings, who are not robots and do not obey fixed laws of behavior (for his opine see previous post)

it is difficult not to question their (the pseudos) motives…but even if their motives are altruistic…they have/are paved/paving the road to hell with good (maybe) intentions…condemning our children and friends to Bettelheim’s Empty Fortress…committing untold, unforgivable, sins of omission and commission…not sure even their great gawd of science will forgive them.

they deny our children/friends (as richard say) “the right to communicate by which ever means they so wish”...deny inalienable right to happiness… Oh, the Places You’ll (they could) Go!

re:{dwight f] It is a starting point though, a valid avenue for research

there’s been a starting point for decades…see prior post, NYT article, etal…since the mid 60s…untold thousands have died and institutionalized waiting for the pseudo scientists to research the innate ability many on the spectrum have …vise viciously attacking progress, defending/excusing the status quo in the name of the great gawd of science…refusing to believe the science of “seeing is believing”.

re: [Joseph] That’s how science works, and that’s the only way it can keep advancing.

if science works the way J thinks…the sun would still revolve around a flat earth…but hope Jetals dont fall off the edge of the universe…but doubt J-etals would begin to recognize: a valid avenue for research…it takes compassion for the least which they seem to lack.

stanley seigler
Dwight F
October 11th, 2009
06:46:30

@stanley seigler

I don’t get the impression that that Carly video is of the “Facilitated Communication” variety. Not judging from that YouTube link you gave. Although she is using a keyboard, she does seem to be typing quite independantly.

As mentioned before, hand over hand is something different than the FC being discussed. Hand over hand is the relatively brief stepping stone toward independant actions during which time it is understood that the instructor is providing very direct input, with prior knowledge of the outcome. It is a teaching technique with the intention of information flowing from instructor to student.

FC is characterized by ongoing dependence on the facilitator and an assumption that the facilitator isn’t heavily influencing the message. The information flow is assumed to be in the other direction.

The later has had serious false starts, largely abject failure so far. That would be the importance, if valid claims (I don’t know anything about them), of these cases of FC accuracy being confirmed by individuals who are later able to communicate independantly.
Dwight F
October 11th, 2009
06:55:18

Incidentally one thing that really struck me about that video is her dad’s recollection of his realization that all those years he’d spent years talking in front of her like she wasn’t there she had been listening. Not only poinent but also suggests to me that her parents hadn’t been doing “FC”.
NightStorm
October 11th, 2009
14:24:47

@Richard: One can fight
the establishment to stay out of the box ‘marked’ disability
which I refused to fit into.

I think there is a difference of letting social stigma ruling you and facing a real fact. Being disablied isn’t a source of shame. For many like myself it’s a damn fact. However letting the fact of being disabled act as a social taboo, is something you should refuse. I will not let people degrade me make choices for me or be unethical because of my disablity.

The lable of being disabled isn’t a problem, it just a fact of life and you shouldn’t fight it. What you should fight is the lies, the propaganda and the ableistic sheep, that use that fact to force their will upon you. Fight the stigma not the lable.
Richard
October 11th, 2009
14:25:20

Stanley, re “those my old fried bob fredericks says: do not understand observational science as applied to human beings, who are not robots and do not obey fixed laws of behavior”

One would question if one can ever rationalize human behaviour.
I try to make sense of a society that denies equality to
human beings – it seems very unrational to me. Surely all
people are born equal or do we not believe in an equal
society. And if we believe in an equal society why would
we deny sections of it an equal education and equal rights.

I expect that is a very idealistic view point.

As a child I was penalized for ‘disability’ and now I hope
that as an adult I can use my experience of 32 years – years
when I struggled with communication and years when I lived
and breathed communication. I know where I would rather be.

We do not have the right to deny another human being the
right of communication as a society.

Richard
Joseph
October 11th, 2009
16:38:38

We do not have the right to deny another human being the
right of communication as a society.

No, we do not. But despite its name, it has yet to be shown that Facilitated Communication is communication at all. At the moment, it’s not just that there’s no evidence that it works; there’s substantial evidence that it’s indistinguishable from fraud.

The first time I saw FC in video I believe it was in “Autism: The Musical.” You can see several other videos in YouTube. What actual FC entails is a facilitator completely controlling the hand of someone who is unable to do so on their own. Then we’re supposed to believe that someone with these physical limitations is able to write perfect adult-like sentences, with perfect grammar and no spelling mistakes at all, and that the facilitator is not really directing the hand where the facilitator thinks it should go. (I’m not saying it’s unbelievable because of the cognitive disability, but because of the physical disability primarily. Even very abled-body people produce typos from time to time.)
Laurentius Rex
October 11th, 2009
17:32:23

“Even very abled-body people produce typos from time to time”

It’s called being drunk in charge of a keyboard.
Dwight F
October 11th, 2009
18:59:57

>> ... of these cases of FC accuracy being confirmed by individuals who are later able to communicate independantly.

That should read “corroborated”, not “confirmed”.

>> It’s called being drunk in charge of a keyboard.

Or being ever so slightly human. I still screw up. See any number of my posts for examples, as I assure you I am quite sobber when posting. :)
stanley seigler
October 11th, 2009
21:41:37

[dwigth f] Incidentally one thing that really struck me about that video is her dad’s recollection of his realization that all those years he’d spent years talking in front of her like she wasn’t there she had been listening. Not only poinent but also suggests to me that her parents hadn’t been doing “FC”.

COMMENT
Incidentally another thing, carly’s mom say: Hello everyone…this is Tammy, Carly*s mom…What Carly is doing is not, and has never been FC or facilitated communication.

Reference to carly was about her ability to communicate after being thought a candidate for an institution…this innate ability seem to be present in some (many, most ,all?) on the spectrum…

this ability is what a true scientist would research…vice wasting time discrediting (viciously attacking) FC…for reasons unknown

FC works (I have put my hand in the spear wound) and is one means to surface this ability…in any event;

[Dwight say] “It is a starting point though, a valid avenue for research. If generally FC produces poor, inconsistant results why do these cases appear different? Was it something within the ASC person? Was it something their facilitator was doing/observing? Is the ASC person right now lying or have tainted recollections? ((Yes, we should seriously consider this.))”

Valid research should have stared in the 60s…

To deny the ability exist is similar to saying mozart was too young, didn’t have the training to write symphonies at 4 (some very young age)...ie, those who don’t believe seeing is believing would say someone else wrote them…some evil genius facilitator…his dad, maybe.

Many (most, all?) do not originally type in grammatically, etc, correct sentences, paragraphs…some progress to this point, some don’t or haven’t yet.

If this ability exist in some (many, most,all?) why couldnt FC produce the results todd-etals deny…

“Empiricism used to mean that the scientist (Galileo, say) believed the evidence of their own observations over the speculations of the textbooks; now it seems to be the other way round.” (quote by I don’t remember)

caveat: the “i dont remember quotes” are from one of many past replays of groundhog day FC discussions…may not be exact.

stanley seigler
Dwight F
October 11th, 2009
22:14:42

>> Valid research should have stared in the 60s…

But researchers were flooded with cases of Facilitated Communications chalatins?
Richard
October 11th, 2009
23:54:57

Re: “Then we’re supposed to believe that someone with these physical limitations is able to write perfect adult-like sentences, with perfect grammar and no spelling mistakes at all, and that the facilitator is not really directing the hand where the facilitator thinks it should go. (I’m not saying it’s unbelievable because of the cognitive disability, but because of the physical disability primarily. Even very abled-body people produce typos from time to time.)”

So you conclude because you saw a short video where no typing
errors were made that the person does not ever make typing errors
and their hand was being moved towards a key!

If you were in a test situation would you endeavour not to
make mistakes – say a job interview or an examination – or would
you think it was important to be professional and make a good
impression?

And if someone types with a childish word structure and makes errors then it is deemed more acceptable. Is that because it
fits in with society’s perceived view of disability?

Christy Brown – a published author – typed with his left foot. Christopher Nolan typed with his head – another published author. (Both deceased). Physical appearance/disability is no indication of intelligence level or ability to communicate.

Richard
stanley seigler
October 12th, 2009
03:05:54

[Dwight] But researchers were flooded with cases of Facilitated Communications charlatans?

charlatans like:

?sue rubin

?those exposed by: behavioral psychologists and charlatan psychiatrists. The former apply all manner of behavior modification systems to people with innate neurological anomalies without a hope of benefit to anyone (except their own earnings). The latter use powerful drugs to control behavior without proper monitoring, and in institutions to control patients with minimal staff.

?those exposed by: psychologists [who] use statistical methods that require large samples to calculate standard deviations and error bars from sets of as few as ten subjects.(see previous post)

hard to tell the charlatans with or w/o a program…

how many charlatans (FC users) do you know personally…oh, would you consider my 44 yo daughter (non verbal, classic kanner autism, spoiled only child) a charlatan…

she does NOT write poetry or screen plays…but when she responds with FC it’s a most moving experience…and she is a great teacher.

she has no formal education…state of art special ed in her day was putting rings on a stick…she must have been bored out of her skull…

since FC: most off the wall behavior eliminated…orders of mag happier…still and always will require 24/7 support…no miracles…but FC works for her…btw;

at 4 she learned to button (ABA at UCLA) at 44 she can no longer button…hard to believe with all the scientific data to prove ABA works…

repeating: hard to tell the charlatans w/, w/o, a program…

stanley seigler
Arthur Golden
October 12th, 2009
04:42:55

Returning to my computer after 2-1/2 days, I find there are 25 new comments to this blog entry that I have not had the opportunity to respond to. In addition, after Michelle Dawson stopped moaning and groaning on her QuickTopic Discussion Board about being put on moderation by Kev for this blog entry, there are now 17 relevant comments over there which I think should be considered (see messages in the 9700s: 39-41,43-48,51-56,60,61). I never expected there would be so much continuing activity on this subject. Even Jonathan Mitchell got into the act with a blog entry on his blog, with several comments over there. Now I need to be away for my computer for several more hours, but I hope to respond to some of these new comments in the coming day.
Richard
October 12th, 2009
11:52:01

At the age of fourteen, at school, before I began to type, I
had to have an assessment with a Psychologist. No one asked if
I wished to do the assessment so I refused to take part in
the assessment and I laughed every time she asked me to participate. I realised that if I did the assessment the result would go on my file and it would record my perceived level of intelligence. Because the level of the assessment was so low I
thought I was in a no win situation. I did not have sufficient
verbal language to even try to explain.

My teacher who had always stated that I was of above level of intelligence asked me why I did not do the assessment. I recall she said to me, “You were able to complete everyone of those tasks”. A few months later when I began to type to communicate and I was then able to communicate to the teacher my reasons for not completing the assessment. Maybe not so articulately as I am able to do so today. The result was that the Psychologist was really put out and stated that although I was highly intelligent I was low functioning. My teacher did not have the position at the school to argue with her although she was Head of Department for children on the spectrum and did not agree with her.

I spent the next two/three year period arguing over the curriculum. I hoped perhaps they would change it for all the children not just myself. In protest I refused to participate in Life Skills and demanded academics. I was told they did not teach academics at the school. The truth is that at the age of fifteen all the children went on to the Life Skills curriculum. So I asked to be allowed to go to another school but my request was refused. I wrote to the Head of the School explaining my reasons
for wishing to study academics nut he ignored me. And made some comment about watching the steam come out of a kettle. Eventually a new Head of Department threw her hands up in the air in sheer exasperation and said they could teach me what they liked. But it was all too little too late as far as I was concerned. The new Head of Department stated in my hearing, “That you would not think I was so intelligent to look at me”. The fact that it was stated that my movement was extremely high functioning seemed to escape her notice. I was in fact condemned for having a physical disability.

I decided I was going to College. I applied to six Colleges
before one would offer me a placement. I was finally accepted
on the merit of a poem I had written at the age of 15, but
instead of being offered a general studies course I was offered
an advanced level course.(Pre degree – at the time only 20% of
mainstream students studied at this level.) At the time the staff at school were trying to place me in a ‘day facility’ for people with learning difficulties. I made a tape and stated on the tape in speech that I would not go to the day facility.

So now I ask myself how many of the people who had their
communication aids and funding taken away would have been
able to achieve what I have achieved.

No one has ever apologised to me for assessing me as ‘learning disabled’over a period of nineteen years. One has to ask the
question how can a person go through the system and the
system fail them to such an extreme. And then one has to ask
the question, “How many other children suffered the same fate”.

By the time I left school ten children were typing to
communicate with support. One went on to study a distant learning
foundation course – pre university.

So FC is not the failure that people seem to believe. However
for every person that types today to communicate it could have
been a hundred or a thousand. And we will never know because
no one is going to admit they condemned people like me to
‘segregation’.

Richard
Richard
October 12th, 2009
13:51:02

Sorry guys that should have read “but he ignored me” not “nut” – still making typing errors.

Richard
Joseph
October 12th, 2009
14:12:42

So you conclude because you saw a short video where no typing errors were made that the person does not ever make typing errors and their hand was being moved towards a key!

No, I primarily conclude that based on multiple studies that show FC to be indistinguishable from fraud. The videos do make the whole thing look like complete bullshit, though, but that’s just my personal opinion.
Rose
October 12th, 2009
16:15:17

ABA is science-certified…hmmm.
stanley seigler
October 12th, 2009
17:42:01

re: No, I [joseph] primarily conclude that based on multiple studies that show FC to be indistinguishable from fraud. The videos do make the whole thing look like complete bullshit, though, but that’s just my personal opinion [Joseph]

COMMENT
certainly your right to, in essence, call people on the spectrum, who communicate to the world with FC, bs-ers…and;

know you are not just bs-ing…but on which specific studies you have read/evaluated do you base your opinion…

for one who worships at the alter of science…it’s a little disconcerting to read its “just” your personal opine…think asked, what is your interest in autism/FC…ie;

are you in a position to inflict your opinion on those with autism, their families and friends…thus condemning them to a life of silent unbearable pain and suffering…denying them possible release from a prison of silence…denying them the same freedom you have.

re: ABA is science-certified…hmmm. [rose]

COMMENT
ditto hmmm…as mentioned: at 4 my daughter learned to button (ABA at UCLA); at 44 she can no longer button…hard to believe with all the scientific data to prove ABA works…

would someone point me to scientific studies that prove long term ABA success…ie, whats the life of those who learned to button at 4, like at 44…note 4 to 44 shorthand for general ABA long term success indicator

btw perhaps some combination of FC by whatever name and some form of ABA would be a most successful program…any reports/articles on such a program…further;

if IDEA and FAPE (fair appropriate public education) are not just a politician’s joke then; above type program should be part of public education…ABA at $40,000 or whatever per year is beyond the reach of many/most families

mo hmmmm-ing…in the $40,000 is there much profit for ABA practitioners who viciously attack FC…provoking some to call FC complete bs…course this would not effect their scientific/just personal opine…

stanley seigler
Dwight F
October 12th, 2009
18:38:38

>> how many charlatans (FC users) do you know personally…oh, would you consider my 44 yo daughter (non verbal, classic kanner autism, spoiled only child) a charlatan…

The ASC person, no. The people claiming that she is communicating maybe, intentionally or not. Exactly how exactly has the communication been verified?

Because I’ve seen a good deal of things surrounding claims of FC, as Kev acknowledges in his post, that have the signs of quackery. People claiming that only a single finger on a shoulder or hand on a back by the facilitator couldn’t possibly be heavily influencing the communication coming out. With training sure it could, as anyone with a good deal of experience riding a horse should be able to tell you.

P.S. You can indeed have meaningful standard deviation calculations from only 10 subjects. The level of certainty isn’t as high but it is quite acceptable, and successful, for exploritory studies looking for potential avenues of investigation. A lot depends on how things are structured.
Laurentius Rex
October 12th, 2009
19:53:56

Richard are you sure you are not confusing facilitated communication and augmented communication here. Augmented communication is about technology I have known many people who used itwith a variety of disabilities, as I have said my mum eventually used a possum microswitch to control a computer and various other devices in her home.

Facilitated communication on the other hand is a method, one open to much abuse.
stanley seigler
October 12th, 2009
20:38:45

the unanswered question: how many charlatans (FC users) do you know personally…assume you will answer…in the meantime/in between time…

re: Exactly how exactly has the communication been verified?

assume you ask re my daughter…she has FCs with several different facilitators…including me; she’s a better speller than i…especially on classical composers names..she does not FC with me consistently, but;

as mentioned when she does it is a most moving experience…there is no way, i influence, unless she reads minds…we do not test her…she does not need to prove anything to you or other todd-etals, pseudo scientists.

re: You can indeed have meaningful standard deviation calculations from only 10 subjects. The level of certainty isn’t as high but it is quite acceptable, and successful, for exploritory studies looking for potential avenues of investigation. A lot depends on how things are structured.

a hell of a lot…maybe to the pseudos…certainly not among the physicists i have known (see quotes by deceased friend in previous post)...and i would not try to market any drugs based on 10 samples…guess psychologists can condemn many on the spectrum to a life of silence based on 10 sample results…

when you respond to the number of FC charlatans you know personally…would/could you advise studies based on 10 subjects you believe confirm joe’s “just opine” FC is bs…or studies you believe confirm scientificly FC bs…

when you confirm FC is bs based on 10…you might want to consider richards comment:

[richard say] “So FC is not the failure that people seem to believe. However for every person that types today to communicate it could have been a hundred or a thousand. And we will never know because no one is going to admit they condemned people like me to segregation”

richards comments reminds of scene from awakenings:

Dr. Sayer: Whats it like to be them? What are they thinking?
Dr. Ingham: Theyre not. The virus didnt spare their higher faculties.
Dr. Sayer: We know that for a fact?
Dr. Ingham: Yes.
Dr. Sayer: Because…?
Dr. Ingham: Because the alternative is unthinkable.

seems the FC alternate is unthinkable to the todd-etals…

stanley seigler
Joseph
October 12th, 2009
20:40:33

certainly your right to, in essence, call people on the spectrum, who communicate to the world with FC, bs-ers…and;

I do not do that. I call the facilitators either bs-ers or deluded. To be clear, when I say FC I don’t mean pseudo-FC and other things people call FC. I refer to the testable claim that a facilitator can facilitate communication for someone who is otherwise 100% or nearly 100% incapable of independent language-based communication (through a keyboard or any other means.)
Dwight F
October 12th, 2009
20:49:34

>> …we do not test her…she does not need to prove anything to you or other todd-etals, pseudo scientists.

Again, it isn’t her that needs verification. It is the man-in-the-middle, the channel of communication that is in doubt.
Dwight F
October 12th, 2009
21:12:51

BTW…

>> and i would not try to market any drugs based on 10 samples

No, not “market” it based on it. But studies with sizes of 10 or 30 patients are an important step in the cycle towards a marketable product, or a new use for an existing product. A step that is used to sift out the pretenders, if not potentially damaging and ethically dubious. A step that FC (rather than the “augmented communication” Laurentius Rex speaks of, what seemed to be happening in that YouTube video of Carly) has failed more than once.

That is why it lacks credibility. Not only because it hasn’t proven itself. It has been tested and failed. That’s more damning than not being tested at all…except in cases where there is a steadfastness to avoid testing. This rejection of rational and methodical verification for some sort of mystical enlightenment.

Yes, I’m speaking directly about you and your posts that ring hard with the rhetoric of “faith healing”.
stanley seigler
October 13th, 2009
00:17:29

re: Yes, I’m [dwight] speaking directly about you and your posts that ring hard with the rhetoric of “faith healing”.

oh my, sigh…name calling has replaced addressing issue…or perhaps i missed the post:

when you respond[ed] to the number of FC charlatans you know personally…and advise[ed] studies based on 10 subjects you believe confirm joe’s “just opine” FC is bs…or studies you believe confirm scientifically FC bs…

as you upped the ante to 10-30 samples vice 10…any study in that range would help to understand your position which does so much harm to many on the spectrum…

lets scientifically evaluate these studies…i promise not to lay on hands…or sprinkle them with holy water…

re: Again, it isn’t her [my daughter] that needs to prove it. It is the man-in-the-middle that is in doubt

ok i’ll take a lie detector test…

re: the “augmented communication” Laurentius Rex speaks of, what seemed to be happening in that YouTube video of Carly

assume you believe carly is not a fraud…and maybe her miraculous innate ability surfaced by “augmented communication” exist…and possible exist in some(many/most/all?) on the spectrum…

OTOH

assume you believe sue rubin (Autism Is A World) is a fraud as she uses FC…and she does not have an innate ability to communicate…or it has not surfaced as yet…

The subject of this film is Sue Rubin, a woman with autism who was considered mentally retarded as a child. At the age of thirteen, she learned to express herself through a computer keyboard, otherwise known as facilitated communication, revealing that she was in fact highly intelligent. She went on to study history, specializing in Latin American History at Whittier College and to write speeches about her life with autism. Director Wurzburg has called Rubin “the Helen Keller of her generation”.

stanley seigler
Richard
October 13th, 2009
01:44:09

Laurentius Rex re “Richard are you sure you are not confusing facilitated communication and augmented communication here”.

*To clarify. No I am speaking about supported typing.(Fc) I have typed independently and then with support (fc). I learnt to write with support and then independently. I would not deny another
person the same opportunity/opportunities that I have had myself
to communicate through the medium of the written/typed word. One has to look a the wider picture and the implications of denying
people the right of communication. I am a believer of ‘absolute
equality’. And because I have the experience of fc I am in a
position to make valid comments. If people such as myself do
not make a stand against social injustice who will speak out?

To come to an informed decision on any subject one has to look
at all data available.

Joseph

Re: “No, I primarily conclude that based on multiple studies that show FC to be indistinguishable from fraud. The videos do make the whole thing look like complete bullshit, though, but that’s just my personal opinion”.

*Perhaps you have read the wrong research data.

I understand that on-going research in the UK (not as yet published) has proved with tracking equipment that the students are looking briefly at the key before they type it. So if this is the case then obviously it is not the facilitator moving anyone’s hand or guiding a hand – an idea which I find would actually prove extremely complex and difficult.

I should have mentioned the ‘ten’ was out of approximately eighty students – nine of which I have never met to my knowledge. I may
have seen them around the school. As I stated it was around the
time I was leaving school. Many of the remaining had good veral communication skills and so therefore would have not needed to type to communicate. And that was not actually the point I was making – I think you have missed it.

Rose: I have just remembered that if you look on line you will
find an interview that I did with Donna Williams. You may find it of interest.

Richard
Dwight F
October 13th, 2009
02:59:03

>> oh my, sigh…name calling has replaced addressing issue…

Perhaps we should ask the “psuedo-scientists”?

>> as you upped the ante to 10-30 samples vice 10

There was no “upping”, 10 falls within the range of 10 to 30. Larger samples are as always prefered but budget, logistics, and availability can be an issue.

As for the rest of your post, you may assume that I am very suspicious of the claims of people that willfully avoid verification of the communication channel, as you do, and make spurious claims of “psuedo-science”, again as you do, and resort to “flag wrapping” emotional plays to avoid relavent facts, yup you again.

So that brings us to Kevin’s initial question, where to stand as a questioning mind? I submit it is very straightforward. To recongnize it for what it is, an ethically bankrupt positions that hurts not only the autistic that is suppositly being helped but also those that truely do use alternate forms of communication, such as keyboard, by tainting all through the reputation of the scam.

That’s right, if your daughter really is communicating then you are only hurting your daughter by not rigerously testing and confirming her channel of communication. You are a fool for thinking otherwise … or deep down fear that the truth mighte be that she isn’t? Which would it be, Stanly?

P.S. It doesn’t matter how many “I know”. That is the reason for striving for objective testing and reporting, so no one person needs to be everywhere and experience everything firsthand. “Seeing is believing” is extremely overrated, as anyone can see that the sun rises and sets everyday, orbiting the earth. The inquisitive mind seeks deeper than just our immediate experiences of the moment.
Richard
October 13th, 2009
12:18:35

Stanly,

You are not a fool and believe me you have nothing to fear other
than discrimination and social injustice and inequality. And no one has to be subjected to rigorous testing and confirming their channel of communication – it their human right to communicate
by which ever means they wish and no one has the right to
force another person into a situation they are uncomfortable with. They would not dare treat children in mainstream in
the same degrading way they have treated children with
‘disability labels’.

And for the general interest of those that have not done their
ground work re the success of fc – I was the only student (that I am aware of – it was a number of
years ago now) at the schools I attended that left to
go on to further education. I believe another student classed
as Asperger went on to study at a lower level. Many went from
school into residential care homes and others the day care
facility – which was the highest expectation for them. And as I mentioned one guy who typed with fc studied a distance course at foundation level as he had not studied at Advanced level. Last I heard he was ill and had been unable to continue his studies. None after being denied an equal education were able to join the work force. None of the local Colleges would give them placements because they were on the spectrum – this applied to those with verbal skills as well as those without. The children
that I had high hopes for because they had fair verbal skills
fared no better than those that had poor verbal skills.

All I can say Stanley from my own view point is that “The past is a foreign country: they do things different there”. They believe behaviour modification will fix a child with a communication difficulty. So instead of addressing the real issues they subject them to treatment that dehumanises them and then when it does not work they blame the individual and
label them low functioning. Of course they do not wish to be
challenged how would they live with such a crime against humanity. Most children do not have the strength
to stand up against the system. At the school I attended there
was one speech therapist for eighty children and when parents
asked for more funding it was denied because it was thought
a waste of money for children on the spectrum. The establishment would rather spend money on fruitless activities which are deemed acceptable for children perceived as ‘disabled’. Perhaps if they
raised they sights from one plus one, the children might have
shown some interest in the curriculum.

Truth is a perception of a person and the truth of fc is
hidden beneath a pile of out dated research data. With November 5th on the horizon because we should burn it and hope that a
wider examination of the truth (of fc) might shed more
light.

But for your daughter and I we are living in that light – and
we are extremely grateful for the people that do believe in
the human right of communication.

Richard
Richard
October 13th, 2009
12:26:35

Sorry still making typing errors – should have read “perhaps
we should burn it” instead of “because”. Sorry I still have
trouble with Scotopic Sensitivity or Irlen (whatever one wishes
to refer to it by). The tinted lenses help beyond expectation but
they are not a cure and black print on a white background is not too good for me.

Richard
Dwight F
October 13th, 2009
14:03:41

>> They would not dare treat children in mainstream in
the same degrading way they have treated children with
‘disability labels’.

Really? Before my yonger typ children could go to preschool/kindergarden they required an eye and hearing exam. Confirmation required for part of the communication channel, blanket applied.

Given the obvious conflict of interest and the long history of non-performance results from FC (as in indistinquishable from fraud) his daughter’s human right of communication demands HE demonstrate authentisity of HIS claims.

Sorry, can’t play the disabled card here. Disability is a PITA some times, requires we go about things in a different manner. That’s inherent in the nature of it.
Arthur Golden
October 13th, 2009
14:07:37

Dwight F wrote about 20 hours ago:

“People claiming that only a single finger on a shoulder or hand on a back by the facilitator couldn’t possibly be heavily influencing the communication coming out. With training sure it could, as anyone with a good deal of experience riding a horse should be able to tell you.”

Being a facilitator for a human being is not the same as being a rider on a horse – your analogy is beyond contempt.

Even if such an insulting perverse analogy was possibly applicable, extensive training in a limited number of specific commands made to a horse every so many seconds or so, is not the same as trying to cue typing of 26 different letters of the alphabet (plus punctuation as often used) at a rate of a number of times a second as I do as a facilitator, where no such “training” is ever done.

Your public apology for demeaning your fellow human beings would be greatly appreciated.
Dwight F
October 13th, 2009
14:16:04

BTW this doesn’t stop at adulthood. Before having a driver’s license you must take an eye test to prove you can see well enough to drive. Fail the test and you are required to wear corrective lenses, it’s stamped right on your license.

Are you suggesting that someone could instead of wearing those glasses/contacts wear a rabbit foot charm aronud their neck and not expect their claim that it cures eyesight to be dismissed without them providing objective efficacy of that method? Rigerous testing?
Dwight F
October 13th, 2009
14:18:12

>> Being a facilitator for a human being is not the same as being a rider on a horse – your analogy is beyond contempt.

Please point to scientific evidence to show that. As a ‘skeptic’ must say, the subject of this thread, show me the data.

Besides, it wouldn’t require 26 letters and however many punctuation points. Thanks to the keyboard it would require simple 2-dimensional directions.
Char Brandl
October 13th, 2009
14:36:20

This is scary, to say the least. I am jumping in here after a quick scan of what’s been posted thus far.
I am not a scientist, and don’t even like talking science. I am a retired teacher who used FC with my students starting in 1992 and have continued to use FC with kids and young adults now that I am retired.
I am not full of BS, am not lying, and for the most part don’t think I am deluded. (I used to scare easily; getting to know my FC users has toughened me a lot – or else I wouldn’t be here writing this today).

Let me just tell a few stories from my very personal perspective – you can take it for what it’s worth to you, and if it’s not scientific enough for your taste, just dismiss what I have to say. Until you have heard enough stories to pique your interest or change your views, of course. I do believe that day is coming.

In all my teaching assignments, I seemed most drawn to those with the most significant challenges – labels of severe/profound cognitive disabilities (mental retardation), Down syndrome, cerebral palsy, autism – and various combinations of these conditions. Most had serious problems with just about everything, including of course commmunication.

We tried all sorts of things, but nothing worked as well as FC, and I will readily admit that I had vastly underestimated the abilities of the kids in my classes – Sorry, Richard, I was one of those who actually tried to get kids to “look at me” or string beads or whatever. We just had no idea!

But I was lucky. I had the opportunity to go back to many of my students years later and apologize. Each and every one was understanding and forgiving. “You didn’t know” was what most of them typed. One even followed that typed comment with a hug – and her severe CP made hugging just about impossible – she did that with NO physical support from me.

My everyday life was full of validation for what was happening. Kids who hadn’t been able to sit and attend AT ALL (or was it the nature of what I was asking them to do that kept them wandering around the room????) sat willingly, even eagerly, at the keyboard for back and forth typed conversations. Sure wish I had thought to tape these experiences – I could now post them on you-tube to share with all of you! Ah, but that was long before the age of digital recordings of daily activities. Guess that wouldn’t have worked after all.

I had the extra good fortune of being the facilitator for many different individuals. I didn’t realize at the time just how important that was. While all the kids typed that they wanted people to know they were smart, and all of them wanted to tell their parents they loved them, what they typed and how they typed was very unique for each one, once we got past those common threads. One wanted to “talk” basketball ALL the time – and I knew next to nothing about the NCAA teams or competition. Another typed about his anger with having Down syndrome and being misunderstood everywhere he went. One typed about problems in his family that we were able to follow up on – confirming what he had typed, and fortunately clearing up some important misunderstandings. Interestingly, this last guy COULD talk, but as he typed about serious concerns on the home front, he was talking about lightswitches and trains. He could only get at the serious emotional matters if I allowed his autistic “chatter” to continue.

Yes, I was holding their hand, or wrist, or forearm, but each one wanted to be supported in a slightly different way – and they often had to remind me of that as I switched from one student to another. Have they become independent? I really don’t know. FC was taken away from them when I left the school (not by my choice). What I do know is that their families believed in these kids and were now determined to never again allow school staff to treat them as unable to learn. From that time on, they were exposed to academic work at grade level and dealt with as young people with ideas, feelings, and knowledge similar to others their age, even if they weren’t able to demonstrate such abilities with any consistency using traditional means.

I could go on and on, and in fact did write a book about my experiences. Most of all, what I experienced has forever changed my life. I have now retired from teaching, but continue to support several individuals who type to communicate. They never cease to amaze me with their patience and tolerance as they wait for the rest of us to finally “get it!”

Char
Arthur Golden
October 13th, 2009
14:55:27

Dwight F:

No one would bother to collect data on such absurd “facts” as you are alleging so I cannot provide such data.

Keyboarding does not require “simple 2-dimenstional directions” – especially with the technique of Facilitated Communication that does require removing the finger from the keyboard to a position above the keyboard.

Please present me your data to support your ridiculous statements. You cannot just keep making more and more absurd claims.

Again, we are discussing the lives of human being with divine souls – not horses. Of course, I suspect you believe that human beings are just more advanced animals. Fortunately for my friends with autism, we live in an ultra-orthodox Jewish community where all human beings are treated with dignity since all human beings are created in the image of God.

Arthur Golden of Jerusalem
Arthur Golden
October 13th, 2009
15:25:01

Joseph,

I don’t mean to ignore you, but I am waiting to see if I get a response to a private email before getting back to you. I hope to directly respond to your comments made specifically to me within the next day or two.

Arthur Golden
Dwight F
October 13th, 2009
15:26:20

>> No one would bother to collect data on such absurd “facts” as you are alleging so I cannot provide such data.

Sure people have. Anyone interested in how that works. Or rationally interested in the right of communication for the autistic.

>> Keyboarding does not require “simple 2-dimenstional directions” – especially with the technique of Facilitated Communication that does require removing the finger from the keyboard to a position above the keyboard.

Move to a position. No more movement? Press and release. Repeat. The very simple Z-axis movement is only an event easily embedded in the 2-D control. Or it could be a separate special event trigger.

>> Please present me your data to support your ridiculous statements. You cannot just keep making more and more absurd claims.

You would like a demonstration of this specific application? LOL. Well it’d take time. At first there would be a good deal of mistyping. Likely start out with more obvious control, then move up to finger or hand on back control. Not that it would be anywhere close to conclusive of course, where-in that’s why it would largely be a waste of time. Much better to focus on the positive, attempting to show that FC works.

But if I and someone else has a month to kill (just a guess) we could take a run at it.

>> Again, we are discussing the lives of human being with divine souls – not horses.

We are discussing two organisms with accute sensory skills with at least basic learning capability.

>> Fortunately for my friends with autism, we live in an ultra-orthodox Jewish community where all human beings are treated with dignity since all human beings are created in the image of God.

You ignore the physiological commonnality? You deny that humans have basic neurological perception abilities? Enchanced perception in some senses having been demonstrated in some ASC individuals.

Because whether or not it is possible has nothing to do with a divine soul. Entirely irrelavent. Another red herring appeal to emotion arguement.

Again, the trappings of faith healers. :/ I’m so done with this thread.
Arthur Golden
October 13th, 2009
15:32:53

Dwight F,

I have respect for skeptics, but I think you are a scorner and a scoffer. King David warns me to stay away from such people in the very first verse in the Book of Psalms.

If you ever acquire faith, please be in touch with me. I hope you find your divine soul soon.
stanley seigler
October 13th, 2009
17:47:33

dwigth f say re:

re: There was no “upping”, 10 falls within the range of 10 to 30. Larger samples are as always preferred but budget, logistics, and availability can be an issue.

yup 10 does fall in the 10-30 range…however originally you did not mention 30 inferred 10 was just fine…then added range 10-30 (a 20 point up) w/o providing studies even in that range…now;

vice providing studies that might help understand your opine you beg the question with buts…why not just provide the studies so we can scientifically evaluate their validity…

re: As for the rest of your post, you may assume that I am very suspicious of the claims of people that willfully avoid verification of the communication channel, as you do, and make spurious claims of “pseudo-science”, again as you do, and resort to “flag wrapping” emotional plays to avoid relevant facts, yup you again.

Asked for what you said were relevant facts such as studies you referred to but didn’t provide…tried to get specific facts re stand on carly and sue rubin…yup, again unsuccessful…

why not just state precisely where you stand on carly and sue rubin…vice resorting to too cute by a half generalizations…

sad you want to ignore (slough off as flag wrapping) emotions…i believe emotions/compassion play most important roles in any ABA or FC or keyboard (whatever that is) process…sad many seem to treat our children and dear friends as Pavlov’s dog and teach them ABA tricks…

yup you prove what my old friend said: [todd-etals] do not understand observational science as applied to human beings, who are not robots and do not obey fixed laws of behavior (for his complete opine see previous post)

re: That’s right, if your daughter really is communicating then you are only hurting your daughter by not rigorously testing and confirming her channel of communication. You are a fool for thinking otherwise … or deep down fear that the truth might be that she isn’t? Which would it be, Stanley?

I have lived my daughter for 44 years…know her well…not as weel i would like to…would die to know what’s in her beautiful mind…thanks to FC have some clues…know what unconditional love is…and;

know that rigorous testing as devised by those “who do not understand observational science as applied to human beings, who are not robots and do not obey fixed laws of behavior”...would do orders of magnitude damage to her…

I will not treat her as one of Pavlov’s dog as you, in essence, suggest…I have seen what teaching her to button using ABA as devised by UCLA did to her.

I do NOT fear (nor doubt) in the least that she does not have an innate ability to communicate (she does in spades)and expresses herself to the best of her ability thru FC…to submit her to the testing you suggest is criminal…what I fear are todd-etals…they the scare the hell out of me…and you confirm my worst fears

Re: P.S. It doesn’t matter how many “I know”.

You are so wrong…it about all that matters…you should know them…it’s not only about testing the facilator

your it doesn’t matter remarks brings to mind a PhD psychologist (funding agency consultant) who spent 45 minutes with my daughter and said she was not autistic (have to wonder how many he knew)...

his evaluation in the face of psychiatrists from Emory to UCLA and pro bono work of one in Beverly Hills…their evaluations: classic kanner autism no mental retardation… and my, at the time, 30 some years of living with her autism.

re: So that brings us to Kevin’s initial question, where to stand? I submit it is very straightforward. To recognize it for what it is, an ethically bankrupt positions that hurt not only the autistic that is suppositly being helped but also those that truly do use alternate forms of communication, such as keyboard, by tainting all with the reputation of the scam.

we could have avoided these discussions if I had know your true colors…i was naive and believed you really meant what you said:

“It is a starting point though, a valid avenue for research.”

Wait a minute…perhaps you’ve been joking about not believing in FC…putting me on…pulling my leg…busting my whatever…I can think of no other explanation for your statement:

” ’Seeing is believing’ is extremely overrated, as anyone can see that the sun rises and sets everyday, orbiting the earth. The inquisitive mind seeks deeper than just our immediate experiences of the moment.”

If not putting me on you are either confused or a complete idiot…pray you are not in a position to recommend programs for those on the spectrum…you sound like a todd-etals…remins me of the PhD who said my daughter was not autistic..but hope you are just a non sequteior running off at the mouth…

BTW if you are a practicing consultant, teacher, etc., would you please advise where you practice so i can advise people in the area of your compassion for their children…and that you believe the parents are fools if they dont submit their child to rigorous testing…

stanley seigler
Dwight F
October 13th, 2009
18:14:34

>> If you ever acquire faith, please be in touch with me.

If you ever stop using YOUR faith as a blatant excuse to avoid rational discussion, and instead mire yourself in ignorance, wasting your God given gift of reasoned thought, you may contact me at liveoak94 ( a ) hotmail ( dot ) com .

@Stanley

>> BTW if you are a practicing consultant, teacher, etc., would you please advise where you practice so i can advise people in the area of your compassion for their children…and that you believe the parents are fools if they dont submit their child to rigorous testing…

Because any [credible] education or medical institution would eschew rigorous testing?

You are past ‘fool’. You are a loon. Good bye.
Dwight F
October 13th, 2009
18:37:47

P.S. Stanley, your beef with that unnamed funding agency PhD psychologist would seem to be a LACK of rigorous and extended information gathering. Although it could very well be that the state of awareness of ASC 14 years ago and perhaps his conflict of interest were significant contributing factors. Sorry to hear you had to endure that. I feel rather fortunate that I didn’t have to go through those “bad old days” with my son.
Joseph
October 13th, 2009
18:42:40

If you don’t want to get tested, that’s fine, but don’t complain about people not believing you then. Disbelief is absolutely the default and correct position on this, in cases where the disabled individual is entirely unable to communicate independently with a keyboard. Presumption of fraud is not at all unreasonable either.
Arthur Golden
October 13th, 2009
19:17:26

Joseph,

Did you bother to read what I posted to this blog 1-1/2 hours before you wrote to me October 9th, 2009 15:11:20:
“@Arthur: I doubt I’ll be visiting Israel any time soon, but if I do, I’ll be sure to drop by. The purpose would not be to prove anything. No uncontrolled observation would. What matters is whether you’ve been tested. I’m sure you would’ve mentioned it if you had.”

Only 1-1/2 hours before I did mention it! As I wrote October 9th, 2009 13:35:29:

“In May 1994, using his type of Facilitated Communication, then 22 year-old Benjamin Ethan (“Ben”) made a major life decision. At his request, Ben and I went to Dr. Howard Shane on May 3, 1994 to try to scientifically validate his personal FC. Dr. Howard Shane used his usual procedures and could not validate Ben’s FC, as documented in a 5 page report we received from him several weeks later. Now over 15 years later, FC has still not been scientifically validated. However, Ben and I decided to proceed to try to implement his major life decision, which I feel was very successful for Ben. Should we have waited until FC was scientifically validated? If we did, we would still be waiting.”

Do you even know who Dr. Howard Shane is? In the early 1990s he was the leading “tester” of FC, always invalidating it (usually in the pay of a person accused of sexual abuse via FC - wonders of wonders!). Anyway, I now think I understand that Dr. Howard Shane was not really testing FC but at least for Ben was testing his autism. I am not competent to write up a peer-reviewed article to support my thinking and I wish someone else would do so. BTW, Dr. Howard Shane, speech pathologist PhD, still at Children’s Medical Center in Boston after 32 years, had as the very first child he evaluated there then 5 year-old Benjamin Ethan.
Laurentius Rex
October 13th, 2009
19:20:11

Some things are untestable, google Bertrand Russell’s celestial teapot, to get a flavour of that from one of the last centuries finest logicians and contributors to the philosophy of science.

That does not mean of course that invoking the teapot is proof that something does not exist either, as some would evince, merely that science has it’s limits, because human cognition has it’s limits in what we can deduce from symbolic logic given the propensity to allow insoluble paradoxes, qv Russell again and the Barber of Seville.

Empiricism of the here and now is limited. I cannot see microbes, and that is sufficient by that dictum to disbelieve in there existance, however instruments allow my vision to be extended, and experimentally the activity of microbes and viruses has been proven to be a very workable hypothesis with a great deal of predictive validity.

How ever no amount of science is going to convince me that aeroplanes can fly, and that they are not held up by the flyers faith. All it takes is one doubting Thomas like me to board one, and with luck it will never get off the ground. (or in the worst case it will continue during some lapse of consciosness of mine, until I apply my scepticism to the problem thereupon it will promptly fall from the sky.

The seeing is believing argument is what condemned Galileo. It was a case of the evidence of the inquisitors eyes, (backed up by poor historical sources) versus Galileos telescope.
Richard
October 13th, 2009
19:25:21

Dwight F

I was referring to denying children an equal education and
equal rights not an eye test or hearing test.

You are way off course.

Richard
Joseph
October 13th, 2009
20:52:55

No, I think Dwight has a good point. A license is required for you to drive. A license is required of doctors too. Therapists have licenses. A license implies there’s some testing that has been completed successfully. Why isn’t a license required to facilitate? Certainly, if it were a legitimate profession, it probably would require a license, because it’s a non-trivial endeavor and a huge responsibility to be involved in; one where the facilitator could easily make it seem that another person is saying something they are not saying (which apparently occurs almost always.)
Laurentius Rex
October 13th, 2009
21:18:26

Where do they issue a licence to be an A*** hole?
Rose
October 14th, 2009
01:35:35

Thank you Richard, I did.

Here it is, for those who are interested also.

http://blog.donnawilliams.net/.....-attfield/
Estee Klar-Wolfond
October 14th, 2009
02:34:47

I am sorry I have not had enough time to follow this thread due to other matters, but I understand by Kowalski that it was not she who made the accusation that I had called Adam a “genius,” but Farmwife and I would like to formally apologize for not checking the thread thoroughly. Arthur had emailed me and it looks like I misundstood.

Kowalski, my apologies to you and my thanks for coming to my defence.
Arthur Golden
October 14th, 2009
04:10:43

Jospeh,

Benjamin Ethan at about 4:00 a.m. Israel time, just facilitated with me:

“You may disclose everything on this blog but assume I wish to post on other blogs without disclosing anything.”

I realize it is just 3:00 a.m. in the UK so being on moderation, this post may not be approved for some time even though it will appear in the place and time it is initially posted. Note added after I finished typing this comment – it took me an hour, so it is now about 4:00 a.m. in the UK.

I am still waiting to receive a private email about what I consider a very important point you made, but I wish to respond to another point you made October 12th, 2009 20:40:33, over a day ago. Then you wrote:

“...I call the facilitators either bs-ers or deluded. To be clear, when I say FC I don’t mean pseudo-FC and other things people call FC. I refer to the testable claim that a facilitator can facilitate communication for someone who is otherwise 100% or nearly 100% incapable of independent language-based communication (through a keyboard or any other means.)”

Although Benjamin Ethan (“Ben”) wishes to post to blogs without disclosing anything, with his permission I will explicitly disclose on this blog that besides my role as one of his facilitators, Ben is my own 37 year-old son who lives with my wife and me. I have known many facilitators and I sincerely believe that none of them are “bs-ers.” That leaves that all facilitators are called by you “deluded.” Now delusions is a topic I have given much thought to over the past several months, but primarily concerning the diagnosis of autism, a matter I will not discuss further in this post. Getting back to whether facilitators are deluded, it is possible that some are because some people in general are deluded, irrespective of whether they are faciliators or not.

Am I deluded? I realize that if a person is deluded, then that person does not realize it. Close friends do a person a great favor to point out possible delusions because delusions can be dangerous but also delusions can be successfully treated by medication. However, I at least and although not explictly stated, I think almost all facilitators are not deluded, just as almost all people in general are not deluded, because I realize that I am not absolutely certain that the communication I attribute to my son Ben as an FCuser is actually coming from Ben. I realize that it may be coming from the facilitator, who is I. Although Ben’s independent language has improved over the decades, it is not at the level to confirm his Facilitated Communication. As an aside, the independent language of Richard is at the level to confirm his FC. Richard is an FC user because his FC is so much faster than his substantively equivalent independent language.

Now let me get to an aspect of your statement that concerns the FC user, often a “nonverbal autistic” such as my son Ben – you make the statement “someone who is otherwise 100% or nearly 100% incapable of independent language-based communication (through a keyboard or any other means.)” When my son Ben was first evaluated by speech pathologist Dr. Howard Shane 32 years ago at age 5-1/2, Ben at least appeared to be “someone who is otherwise 100% or nearly 100% incapable of independent language-based communication (through a keyboard or any other means.)” But even in those Dark Ages, he received an intensive education under IDEA and FAPE for the next 17 years in excellent school programs. Although Ben never acquired speech, he did acquire “independent language-based communication.” His method of independent communication is very clear and understandable gestures. I think that almost all persons who are “nonverbal” do acquire independent communication and I doubt that too many persons as you describe actually exist. Human beings, with very rare exceptions, are not actually “noncommunicative” (the term more commonly used, such as by skeptic neurologist Dr. Steven Novella a couple years ago about a 14 year-old girl from Michigan where the facilitator testified the girl made charges of sexual abuse against her father through FC and the father was jailed for over 80 days until the FC was discredited by the expert testimony of Professor James Todd and Dr. Howard Shane). If a professional claims to test that a person as “noncommunicative” I think it is more likely the professional is testing that the person is actually autistic, which happened when a psychiatrist (called the leading expert on autism in Israel) observed my son Ben for the first time last week. This psychiatrist really seems to be an expert in autism because he realized that my son being completely “noncommunicative” in his presence was a symptom of Ben’s autism and not a valid test of his communication skills, which he accepted as possibly existing based on written reports from others.

FC has vastly improved the quality of life for my own son Ben for over 15 years and I wish that other potential FC users were given such opportunities. I know many other autistics who are similar to my own son Ben who were not given such opportunities and all of them have a really miserable quality of life. I am still waiting for the response of Professor James Todd of his claim of other such persons who are now speaking and living independently. Joseph – can you provide me such verifiable information? I realize that FC has not been scientifically validated 20 years after Professor Douglas Biklen brought it to the USA, but I am so glad that he publicized FC, starting with the August 1990 Harvard Education Review, and I am so thankful to the late Professor Gunnar Dybwad for sending my a photocopy of that article, in those primitive days before the internet.

Short comment to Estee Klar-Wolfond – I am sorry that I was not clear enough in my email to you. Kowalski did defend you, in rather “strong” terms, and I chose to not mention the “name” of the person who actually made the negative comment, which I now realize led you to misunderstand my reference to Kowalski. You have my good wishes in your efforts to educate your son Adam.
Richard
October 14th, 2009
10:35:28

Guys, I believe the people that ‘condemned’ me to segregation had a ‘qualification to practise’ – quite what they were qualified to
do is questionable.

In fact I was only reading this week that the average child speaks fifty words at the age of 18 months. I spoke two hundred and fifty far more than my mother’s friend’s children. My mother recorded them in a book at the time – which she still has.

However due to the fact that I was denied
speech therapy as an infant my speech never developed sufficiently for me to be able to converse at this level – through typing. The reason I was denied speech therapy because it was deemed it would have cost too much. My mother tried to engage a private speech therapists but the authorities told them I was retarded – which was incorrect – and because the speech therapists worked for the authority they would not put themselves on the line.

I actually learnt to read twelve words in a few minutes at the age of five (out loud). I can still remember some of the words I learnt to read. I passed a state maths test at the age of eight – writing in the answers independently. I believe I had 75% but
had not covered the remainder of the work.

At the age of a year I was said to have low muscle tone and was stated to not have a learning difficulty but cp was not diagnosed. In fact I was eight years of age before a top Consultant diagnosed cp. Doctors actually disagreed over the
‘disability label’ of autism at around the same age. Although
the medical profession could not agree because it was stated
that my language was not that of a child on the spectrum and
other Consultants stated I had a physical disability.

At the age of two the medical profession confused my medical notes – I know because I sent for copies of them and have read them. So I was confined to ‘special education’ because professional ‘people with qualifications’ could not keep track of their patients and thus recorded false information on their files – such as I did not speak even though my mother had made a tape of my speech which they requested her to do.

But you guys are way off base, the first school I attended was put on Special Measures for years, meaning that it was failing. It left a small child (non-verbal) in a forest overnight and did not realise they had left her behind. The School Inspectors were sent in and it was put on Special Measures. Fortunately for me after witnessing an incident at the school my parents had withdrawn me long before this when they recognised the length to which behaviour modification went to. One parent was going to “The
Times” (he telephoned my mother to ask why she had withdrawn me)
because of the treatment of his son. The child was younger than me and was a quiet little boy. However the Head of the school died that weekend so the matter was dropped.

So do I believe in equal rights for all children; do I believe
they deserve better than to be segregated and denied an equal
education on grounds of disability; do I believe they deserve
equal opportunities; and mostly do I believe they have a
right to communicate by the medium of their choise. The
answer is a resounding YES and nothing that you state can
change that. The system failed me and it failed the children
that I was at school with.

Please do not under estimate my intelligence when I support fc unlike the ‘people with qualifications’ as I stated I have 32 years of experience in the area of communication. I stated I
spent half of my life with poor speech skills and I have spent
seventeen years typing. So I am in a position to make a
valid statement regarding fc. I was able to type a page independently before I opted for (support) fc. I had the ability
to read and write because my mother home schooled me for four
years. Unlike the establishment she never gave up on me. When
I typed independently I could not keep up with my thoughts – I was always six sentences behind which was so frustrating And I had lost fifteen years of my life I could not afford to lose more time to develop my language.

You seem to have a very simplistic view of fc that does not take into consideration the whole picture – only little tiny pieces of the whole.

And by the way I took an eye test at the age of five, and
I have an eye test every year with one of the top Professors
world wide. I use a combination of speech and typing to
take the test.

Richard
Richard
October 14th, 2009
10:53:10

Rose, thank you for taking the time to read the article.
There are others on line in the Tap magazine (The Autism
Perspective).

Richard
stanley seigler
October 14th, 2009
10:53:59

dwight f say re

re: your beef with that unnamed funding agency PhD psychologist would seem to be a LACK of rigorous and extended information gathering. Although it could very well be that the state of awareness of ASC 14 years ago and perhaps his conflict of interest were significant contributing factors [...] I feel rather fortunate that I didn’t have to go through those “bad old days” with my son.

COMMENT
OH S—-...thought i was dealing with a tood-etal.. now i have to apologize for the rhetoric tone, not FC position…and damn, i had a few too cute comments re dwight f’s goodbye and comments to arthur golden…

assume your son is on the spectrum…but had i known, discussion may not have gotten to some root issues…still not sure it has…

off FC topic: North LA County Regional Center (NLACRC) the agency…and after a fair hearing they have been fair with my daughter…she has 24/7; 1:1 support…not true for many/most who need it.

re: LACK of rigorous and extended information..

that not the issue…as mentioned my daughter had evaluations of psychiatrists from Emory to UCLA…neither FC an issue…state of classic kanner autism awareness has not changed much…the change is in the spectrum range…w/o doubt the hired gun was more concerned with RC budget than daughter’s needs…

funding was the issue then; and i believe professional’s livelihood is a factor in positions re FC now…ie, ABA is a lucrative source of income for some (many/most?)...

re: didn’t have to go through those “bad old days” with my son

different issues in days of yore…neither harder nor easier than todays issues…just different…had there had been more awareness of FC (innate ability, presumed intelligence) in bad old days and a different attitude today…things would have been easier then…would be easier now…especially for those on the spectrum.

stanley seigler
Harriett
October 14th, 2009
19:10:58

As an SLP, I first heard about FC in 1991. Soon after, I took a position in a special ed school working with youngsters with a variety of severe to profound diagnoses, e.g., autism, mental retardation, rhett syn., Down syn. These children, aged 5-21, lived in group homes and had had lots of therapies over the years. Yet, most did not speak or spoke very little. Some used a few signs; none had picture communication systems or effective communication devices. Most could communicate very little. I believed from early on that these kids were locked in.

I began attending trainings for every intervention I could find that sounded the least bit hopeful. I fell in love with these kids, but didn’t feel that anything I was trying was of much value.

Then one day I had an opportunity to hear Ann Donnellan speak about FC. I was hooked. “Presume competence” (Donnellan’s “Least Dangerous Assumption”)was an exciting concept. I decided to tell my teen-age students what I was learning. As I explained to one at a time, each of them reacted in some significant way. One normally quiet boy laughed and squealed. Another made rare deep eye contact. Another suddenly stopped playing with his spittle and looked at me. It gave me shivers.

I attended several FC trainings, and over time kids began to respond to FC. Yes, many of them had learned to read from exposure to print and were able to spell as well. Interested staff were trained to facilitate. The kids WANTED to do this…(and without tangible reinforcers). They were viewed differently, seemed happier, and behaviors improved significantly.

To make a very long story short, as questions about FC increased, the agency decided to discontinue it. The kids couldn’t understand why. Staff were devastated. Before leaving the agency, I introduced PECS, which was quite new at that time. Students were not satisfied. After 2 years of FC, kids had learned to point, but pointing to pictures chosen by another person doesn’t replace expressing your own thoughts.

In later years, a “semi-skeptical” administrater admitted that there was no doubt that problem behaviors had increased significantly when the facilitated communication was discontinued.
It’s been 15 years. One can’t help but wonder what might have been.
James Todd
October 14th, 2009
21:57:09

All:

What interesting rhetoric.

Rather than dealing with fundamental issues such as the complete lack of scientific evidence in favor of FC and the very substantial body of evidence demonstrating its many and various failings, we find those who question FC accused of venal pecuniary motives, associated with the personal interests of accused sex offenders, and deserving respect only if they care for a person with autism. I am still trying to figure out what “todd-etal” and its variations mean exactly—except for them being obvious attempts to demean by turning a name into a defamatory epithet. The former conditions indicate that those here supporting FC have nothing substantive to turn to and must resort to attacks on character. The latter indicates a desire to deal with these issues in the manner of a petulant third grader.

I wish I knew people getting rich off of doing ABA for autism. Most of our ABA-trained students go into other things where a decent living can be made. Applying the principles of mathematics tells the real story. If ABA costs $40,000/year, then it costs $27.78 per hour (considering 30 hours per week and 48 weeks a year). With overhead, including liability insurance, utilities, rent, and all the rest, the one-on-one therapists can make only about $10-$12 per hour in a medium size, well-established, center-based operation. This is really little different than the cost of any one-on-one supervision situation within a larger organized setting. Try pricing out an alcohol recovery program or head-injury rehabilitation. Most individual services cost many times more—from plumbing to cardiac surgery. Of course, there is nothing wrong with making a living offering a needed service even when, sadly, the need for that service is sometimes forced upon the most innocent among us. Questions of cosmic justice are beyond my understanding.

Obviously, $40,000 per year is unaffordable for most families. Insurance should be covering this or we should make ourselves a better system of health care entirely. In many places, insurance will pay for years of behavior therapy and other interventions for a child who cannot function well due to a brain injury acquired in a car accident. A child with autism, whose behavior might not be that much different than that of the child who has had an accident, often gets nothing at all. Even when behavior therapy does not achieve an optimum outcome of full independence, and it usually fall short of that, it almost always helps. Every little bit of independence is a little bit of dignity added to someone’s life. Every dollar spent teaching a functional independent living skill is paid back many times over by reducing needed care later. I believe that enhancing independence and dignity is ultimately more important than saving some money. Helping a person do even a little bit more on his or her own is worth a few dollars. But reality demands that things be paid for. So the latter concern rises in practical significance when trying to make a case for assistance with these considerable costs.

We should all chafe the sound of a graduate of Harvard Law School casting aspersions on the honest work of someone coming to the aid of accused defendants in an American courtroom. It does not matter if those defendants are accused of littering or of the most heinous sexual crimes. It does not matter if those defendants actually did the thing or not. An adequate defense is not only a right under the U.S. Constitution, but an absolute necessity if we are going to even begin approach a balance between the massive power of the state and often very limited resources of the accused individual. Nothing reminds us of the disparity of power I speak of like seeing a defendant, technically said to be innocent, jailed without bond, transported to hearings in shackles and dressed in embarrassing coveralls, deprived of income, limited in contact with friends, loved ones, and counsel, completely powerless to do anything similar to those who have brought the charges. Such was the case in Michigan FC matter last year. Tyrannies are defined by the weakness of their protections for defendants, their use of secret evidence and closed proceedings—a fact so well known to the framers of the Constitution that the theme of those protections resonates throughout the Bill of Rights. The genius of the system is that any legitimate defense, even one on behalf of the most vicious criminal, protects the rights of all of us and reinforces our bulwark against the authoritarian impulse.

That defendants would desire to marshall all they can to protect themselves against unreliable, manufactured, or otherwise defective evidence is no surprise. It is their not only their right; it is a necessity if they are to obtain genuine justice. That very rational desire and immediate need is not something to be mocked by saying “wonder of wonders”—as if the inclination to protect oneself from false evidence, or aid others in doing so, arises only from baser motives and not from a genuine desire to have justice done with good evidence rationally considered. That FC reliably fails in court has nothing to do with who does the tests, the nature of the charges, or even that an expert might hope for reasonable remuneration for the considerable time and effort often needed to protect the rights of the accused. FC does not work in court because it does not work. The mystery is why FC is in court at all. Its complete lack of empirical support, its muddled theoretical foundations, its repudiation by professional and scientific organizations with recognized standing, and its amply demonstrated history of generating false accusations of rape should have long ago earned it a bright-line exclusion as evidence at any level in any rational justice system. To fight against FC in court, to fight against any sullied evidence, is to fight for quality justice at the most basic levels—not only for the accused, but, in the case of FC, for the all the innocent individuals who have had bizarre false accusations against their own loved ones typed on their behalf by others. For this, I admire Howard Shane and will stand second to none in defense of his efforts.

As for myself, I left the playground behind long ago. I care little about the childish names, demands for apologies, and the electronic stones thrown from afar. These things distract from the sober consideration of a discredited technique that not only enables the exploitation of people with disabilities and their families, but foists on people who cannot defend themselves an identity of someone else’s making.

James T. Todd, Ph.D
Tom Smith
October 14th, 2009
22:26:09

Joseph wrote:

“If you don’t want to get tested, that’s fine, but don’t complain about people not believing you then. Disbelief is absolutely the default and correct position on this, in cases where the disabled individual is entirely unable to communicate independently with a keyboard. Presumption of fraud is not at all unreasonable either.”

One doesn’t have to “believe” or even be interested in what someone FC’s. In the treatment or school environment workers are often forced to do much more intrusive interventions than FC who don’t “believe” in any of it. No one was forced to do FC when we utilized the intervention. Even other facilitators often weren’t interested in what eachother were coming up with. The issue here is the very real possibility that the autistics are communicating using this method though we may not understand why or how and that the intervention itself is a therapeutic bonanza compared to all other interventions.

As for fraud, yes that is possible but thanks to the limited validity or even belief in FC why would one even attempt fraud? The lack of validity is actually the strength of FC in this sense and the autistics prefer it that way. We have a long way to go before we understand autism and they want to take it a step at a time. Those who don’t believe need not apply for the discovery.

Who’s throwing this word “delusional” around in the context of FC? Jeeze, just common workers and some parents believe in it and they are all regular folks. As Siegler pointed out a nobel prize winning physicist, Arthur Schallow, was an early advocate of the method. In fact he coached me on science vis a vis FC before I started this advocacy.

Could we please have censorship of such libelous and insulting comments?
Laurentius Rex
October 14th, 2009
22:53:13

Tom you are a crypto fascist and you probably know it, without a grain of sense, sensibility, science or whatever behind you.

You have effectively destroyed every argument you try to evince by your thorough untrustworthyness.

You are a pirate and you do not stand for autistic rights at all, you are delusional, you are as big an enemy as Autism Speaks.

Get real.

I am not against FC I am against the like of you who belong in the same universe as John Best, you are in the absolute scope of things bosom buddies in abuse.
Arthur Golden
October 15th, 2009
06:53:12

In response to Joseph, when he posted a comment directed to me 5-1/2 days ago (I plan to respond to Professor James Todd after this message is actually posted on the blog), I immediately posted that I would soon be away from my computer for 2-1/2 days and any response would have to wait. Soon thereafter, Joseph posted October 9th, 2009
21:26:21:

“re arthur ask joseph: why does it sound kind of creepy to you

Do I really have to spell it out? I suspect Benjamin Ethan is basically Arthur Golden, and at this point Mr. Golden can’t apparently even make the distinction in his own head.

I’m not the only one who has noticed this. See the comments in this thread at Autism Crisis.

BTW, anecdotes, testimonials, names, credentials, etc. are not going to convince me in the least. It just won’t work. Even if you show me someone who is an independent communicator who used to do FC, and it is proven all these circumstances are accurately characterized, does this show FC is useful? No, it does not, any more than case reports are sufficient to show that ABA works.”

Then a day later, although not directly to me, but along the same lines so I would like to comment, Joseph wrote October 10th, 2009 19:40:41:

“It is a starting point though, a valid avenue for research.

Given the state of the evidence, FC proponents have a very high burden of proof, and are also responsible for carrying out research that is clear enough to overturn things, if in fact there’s something to FC. They should not expect science to just carry on normally and eventually validate their views. When a hypothesis fails, as appears to be the case here, science basically abandons that hypothesis. That’s how science works, and that’s the only way it can keep advancing.

If generally FC produces poor, inconsistant results why do these cases appear different?

Suppose these cases represent 1 of every 10,000 persons who’ve ever tried FC. Would that make it a valuable approach with general applicability? I don’t think so.

It also doesn’t matter if testimonials are truthful, either. For example, do you doubt that Victoria Beck’s son actually showed some sudden gains in his speech after he has given secretin? I don’t. It doesn’t prove anything either way.”

My response:

Joseph writes: “Suppose these cases represent 1 of every 10,000 persons who’ve ever tried FC.” Even for independent typists, I think the rate is much better than 1 of every 10,000. But I feel the real success is a significant improvement in the quality of life for the FC user, such as the 44 year-old daughter of Stanley Seigler or my own son 37 year-old Ben. For “Jay Nolan” the agency providing services for the daughter of Stanley Seigler and several dozen others with similar needs, it is my understanding that there is real success for nearly everyone of them. For “Pisgat Yehuda” the program my son helped create 15 years ago based on the use of FC, there is real success for nearly everyone of the dozen persons involved. I think this real success for so many people who had the opportunity to try FC does prove something.

Now let’s discuss these anti-FC scientific experiments designed primarily by behaviorists. When it comes to science by behaviorists done on autistics, Ms. Michelle Dawson has amply shown the world what that is worth. I publicly laud such efforts by Ms. Michelle Dawson Unfortunately, my extensive research of Ms. Michelle Dawson, starting nearly 2 years ago when I became aware of her position on FC, has uncovered that she has a few extremely strong biases, one of which is against FC. Then the high standards for research that she preaches is not practiced by her when it comes to being critical of the anti-FC research, if she ever bothered to actually read it, which she refuses to reveal despite the very polite inquiries of “ChrisB” on her own discussion board. She may be right about the quality of the research by the FC promoters, but it looks to me like the research is a problem on both sides and I will make my decision based on real life experiences of real persons, now over 10, 15 and 20 years or more.

Joseph also states “I suspect Benjamin Ethan is basically Arthur Golden, and at this point Mr. Golden can’t apparently even make the distinction in his own head.” As I have clearly disclosed, Benjamin Ethan is my own son. I already stated “I realize that I am not absolutely certain that the communication I attribute to my son Ben as an FC user is actually coming from Ben. I realize that it may be coming from the facilitator, who is I.” I am aware that for all facilitators the distinction can be a problem to make, but I believe I am as careful as I can be, as are almost all other facilitators. In the same comment, Joseph then continues with “I’m not the only one who has noticed this. See the comments in this thread at Autism Crisis.” Autism Crisis is the blog of Ms. Michelle Dawson. Although she is subject to actual persecution by people such as John Best, I am concerned that she has persecutory delusions against me and others, such as ASAN (see her link within this thread at Autism Crisis) and is showing such problems with this blog. Since Joseph brought in the Autism Crisis blog, where I am banned from posting by Ms. Michelle Dawson, I think it is germane that I post here the comment that she deleted from there:

Posted at 2:50 p.m. Tue 6 Oct 09 by “Benjamin Ethan” to the Autism Crisis blog but deleted:

“Dear Ms. Dawson,

This comment is being sent at the suggestion of Jypsy, although I am very reticent to do so. As Jypsy can provide verifiable information after our discussion on a private yahoogroup, I am a 37 year old person who is completely nonverbal and I have an official diagnosis of autism at age 5 from a leading neurologist expert in autism. I disclosed my connection to Arthur Golden on the private yahoogroup but I have chosen to not do so on this blog nor on Interval’s blog 6 months ago.

As I wrote on the blog, I am greatly alarmed at the disagreement between you – Ms. Michelle Dawson – and ASAN, headed by Ari Ne’eman. My real concern is the well-being of you Ms. Dawson, a matter I will only discuss in real privacy. I still have not seen any verifiable information about this disagreement.

I know Arthur Golden had no thoughts of posting on this blog by creating a different account. benjamin.ethan72@gmail.com is my existing account and I used it to post comments on this blog through google. Those comments are my thoughts, I take full ownership of them and the copyright is mine. My writing style has changed in 15 years and I doubt Jypsy is an expert on such matters.

I know John Best has actually persecuted you but you are mistaken about Arthur Golden. I do not know about ASAN but I do wish to help you. From now I will not initiate further contact with you on this matter.”
Richard
October 15th, 2009
09:14:44

I can only re-iterate the points I have raised. I have never
suffered at the hands of typing or fc but I certainly suffered
at the hands of behaviour modification and segregation. As I stated none/or very few of the children at either schools I attended went on to higher things.

As for typing/fc being discredited – I do not think that the
hundreds of people typing with support or independently world
wide would agree with you. No one knows the exact number but
there was an estimation that 1000 people are typing independently.

If society does not feel they owe us an apology for ‘segregation’ – denial of an equal education, equal rights and equal opportunities then it is a very sad world we live in.
Perhaps only those of us that went through the experience can
ever truly understand the humiliation of being labelled and
discarded by society.

This week ME has been stated to be due to a virus – how many
hundreds of thousands of people over a forty year period have
been told they have ‘yuppie flu’ or were faking. How many
people’s lives were destroyed because they were denied the
medical help they required. The ‘yuppie flu’ theory has finally
been discredited.

One day the same will be the case for fc. The case will be proven. And for those of us that continue to type we will live with dignity and freedom and will continue the fight for social justice not just for ourselves but for every child with a
‘disability label’.

And of course parents are angry – why would they not be when
they have seen the most precious thing in their lives put
through the system and denied equality.

Richard
Richard
October 15th, 2009
12:48:07

Re this comment: “but foists on people who cannot defend themselves an identity of someone else’s making”.

Perhaps someone could enlighten me how being able to communicate ‘foists on people’ an identity that is not their own.
I would think the exact opposite would be the case – unless one has good communication skills one is unable to express one’s true
identity.

I have given this matter deep consideration over the years. I
found myself – after years of segregation – in mainstream College. For the first time I was able to communicate at a
higher level. I stagnated in special education. One can only grow and develop as a person if one has the liberty to be able to do so and this covers the area of communication.

But if one considers this view point from an intelligent perceptive then one could state that segregation, denying people access to communication and equal opportunities foists on children/people who are the most vulnerable in society an identity that is of someone’s else’s making. The identity of
‘disability’. In denying us equal rights we become the ‘disability label’ that has been foisted on to us.

That is unless we stand and fight for the equality we have been denied. I personally would rather die on my feet than live on my knees.

Richard
stanley seigler
October 15th, 2009
13:22:24

Todd say re

re: What interesting rhetoric.

Veeery interesting indeed…an “unpaid” expert anti FC witness, PhD (assume psychology) living on food stamps (hard to make it on $40,000 ABA fees and as an unpaid witness) ... lurks on a FC discussion group without engaging for years… finally shows up on this blog to call a parent (who has lived with autism for 40 years) a “petulant third grader”...and;

to complain about inference he has “venal pecuniary motives”...ie, puts his livelihood above rights of those on the spectrum to communicate by FC.

The inference based on lack of other apparent reasons for out of hand dismissal of FC by todd-etals (JT Todd and his ilk)...

guess there are other reasons…eg, todd-etals lack of compassion; disdain for empirical data (amazing feats abounding testimonials); poor eye sight (none so blind as those who will not see); the alternate FC works is unthinkable (thought from awakenings), as it invalidates much behavioral science

re: those here supporting FC have nothing substantive to turn to and must resort to attacks on character. [perhaps well deserved]

FC supporters turn to todd-etals for support. todd-etals acknowledge “amazing feats, college degrees, scripts, awards of FC Stars and abounding testimonials”... (see previous todd post to this blog)

Of course they then dismissed amazing feats as tricks of FCers…ie, they (Todd) say anyone can make claims and lots of people, universities have been fooled…

lots of people and universities are such stupid fools…so easily tricked by the likes of a petulant third grader.

BTW A nobel prize physicist confirmed FC worked for his son…rimland (1991) say: Several years ago renowned physicist Arthur Schawlow reported the remarkable results he and his wife had observed not long after providing their then 27-year-old son with a small hand held Canon communicator…(he probably just fooled us too)

Rather than dealing with: amazing feats, college degrees, scripts, awards of FC Stars and abounding testimonials…Todd-etals base vicious attack on FC users and facilators (who in many instances get no pay) on tests that in the opine of some are not valid…perhaps as IQ test may not be valid for many minority kids…re testing a PhD physicist say:

Worst of all are behavioral psychologists and charlatan psychiatrists. The former apply all manner of behavior modification systems to people with innate neurological anomalies without a hope of benefit to anyone (except their own earnings)...Psychologists use statistical methods that require large samples to calculate standard deviations and error bars from sets of as few as ten subjects…many of them do not understand observational science as applied to human beings, who are not robots and do not obey fixed laws of behavior. (see a previous post for context)

re: If ABA costs $40,000/year, then it costs $27.78 per hour (considering 30 hours per week and 48 weeks a year). With overhead, including liability insurance, utilities, rent, and all the rest, the one-on-one therapists can make only about $10-$12 per hour in a medium size, well-established, center-based operation.

Having played the contractor game in another life (prior to petulant third grader job) i could make (considering all the rest) a 200 percent profit contract look like a loser…and oh, how much does the owner/director of a medium size, well-established, center-based operation make.

The average regional center funding for community support is around $15,000…and many facilators are just part of an indiviuals support staff…

Your categorical assertion FC doesn’t work is categorically not true…

re: As for myself, I left the playground behind long ago.

You left an open mind behind as well…perhaps you should return…oppenheimer say: “there are children playing in the streets who could solve some of my top problems in physics because they have modes of sensory perception that I lost long ago”...and;

you seem to have lost your power to see the painfully obvious…many on the spectrum have an innate ability that can be surfaced by FC and other means…time better spent researching this ability vice trying to discredit FC.

Perhaps if you stay engaged in discussions here, FCWorld, and in general…terms like “todd-etals” and “petulant third grader” can be eliminated …and combinations of ABA and FC type programs can be devised…and maybe one day be FAPE SOP…hope springs

stanley seigler
stanley seigler
October 15th, 2009
17:17:27

tom smith, pls dont refer to me in any of your posts here or else where…
thanks, stanley seigler
Clay
October 15th, 2009
17:58:20

I happened to check a dictionary, and found this:

mi·sog·y·nist (m?-s?j’?-n?st)
n. One who hates women. A Tom Smith.
adj. Of or characterized by a hatred of women.
Tom Smith
October 15th, 2009
21:07:53

Richard, excellent posts. James Todd, my apologies for some of our misguided and cruel FC advocates. We have them on all sides of the issue.

Clay, here’s another definition of misogyny…

The Disciple asked: What is a misogynist?

The Master replied: I do not know; but it is used by cowards as a term of abuse for those who say what everybody thinks.

August Strindberg circa 1900

The more things change the more they stay the same. The truth is misogyny is rare while misandry, not even in most dictionaries, is probably genetic. Talk about “double standards”. The power of women is awesome. Men who abuse other men in defense of all powerful women are oppressors.
Joseph
October 15th, 2009
23:45:08

rimland (1991) say: Several years ago renowned physicist Arthur Schawlow reported the remarkable results he and his wife had observed not long after providing their then 27-year-old son with a small hand held Canon communicator…(he probably just fooled us too)

Is there more in the reference to suggest the communication was facilitated in some way? It sounds like the individual in this case simply communicated independently after being handed the Canon communicator.

Let’s not confuse things. This is like a bait and switch tactic. “See, this thing superficially similar to FC did work, so FC must be a good thing in general!”

Plus it goes without saying that anecdotal evidence is the lowest form of evidence.
Richard
October 16th, 2009
01:47:25

Joseph,

I think the point is that Arthus Schawlow’s son typed to
communicate be it with or without support. A very similar
situation to myself – I first typed on a canon communicator.
Paul Shattock from the Autism Research Unit suggested a
canon communicator to my mother. How many others with
‘disability labels’ would have been able to type if they had been handed a canon communicator?

Richard
stanley seigler
October 16th, 2009
02:31:42

joseph say re

re: Is there more in the reference to suggest the communication was facilitated in some way? It sounds like the individual in this case simply communicated independently after being handed the Canon communicator.

sigh, bet cha $100 it was FC…why should i provide free research for you…what is your interest in attempting to prove FC snake oil…thus criminally denying many on the spectrum the right/opportunity to communicate with FC if they choose…

Oh well what the heck…
“In addition to his dedication to physics, Art Schawlow was a devoted husband and father of three children; Artie, Helen and Edie. Art and his late wife Aurelia devoted considerable time and energy caring for their son Artie, who has autism. Their efforts included organizing a nonprofit corporation to provide a group home for autistic people and the championing of ‘facilitated communication,’ a means of enhancing communication with autistic individuals.” http://www.stanford.edu/dept/p.....ibute.html

Both parents worked intensively toward finding ways for communicating with autistic individuals. One somewhat controversial method on which Arthur Sr. did research and became well known was for the autistic individual to spell words with a small handheld machine. Arthur and Aurelia wrote a chapter in a book Integrating Moderate and Severely Handicapped Learners under the title “Our Son: The Endless Search for Help.” http://www.nap.edu/html/biomems/aschawlow.pdf

BTW my friend (PhD physicist, twin autistic boys who FCed) who opined psychologists didn’t have a clue to statistics re human behavior (see previous post) worked w/ Schawlow on laser projects…

mo on Schawlow

Typically, when Schawlow won the Nobel Prize, his first thought for the prize money was to help people with autism. When I apologised for calling him early in the morning the day the prize was announced, he said it didn’t bother him because he’d been woken earlier and was too excited to go back to sleep. Many people had assumed he had shared the 1964 prize with Townes, and he joked that the 1981 prize saved him the trouble of explaining that he did not have a Nobel

I [richard] think the point is that Arthus Schawlow’s son typed to communicate be it with or without support

wish that were the point…the point is there are those who are hell bent on denying the right to communicate using FC…reasonably sure i know todd-etals’ motives…not sure of J’s.

stanley seigler
No Psychics
October 16th, 2009
22:23:54

Perhaps someone could enlighten me how being able to communicate ‘foists on people’ an identity that is not their own.

Richard, you ARE aware of the experiments primarily responsible for discrediting FC in the first place, aren’t you?

Autistic individuals who were claimed to be able to communicate, but only through FC, were asked to identify the picture that was displayed to them.

The facilitator didn’t know that THEY were seeing a DIFFERENT picture than the one which was being displayed to the autistic individual.

And the autistic individual did not know what picture was being shown to the facilitator.

If FC had ACTUALLY been letting these autistic individuals communicate, then what they would have communicated is what THEY saw.

Instead – without exception – it was what the FACILITATOR saw that was reported. You cannot believe that that was the autistic individual communicating with the mere assistance of the facilitator unless you claim that the autistic individual was in each of these tested cases psychic, able to report what was in a picture they weren’t able to see.

If you can’t see that these autistic individuals were having someone else’s identity foisted on them by the facilitators who made what THEY were seeing come out through the FC and claimed “that’s what this autistic person is saying!” then I have to assume you aren’t even trying to approach this matter as a rational person.
Richard
October 17th, 2009
01:04:53

You may make any assumption that you wish. Your perception of
truth is not my perception of truth. You perceive the situation
from one view point and I perceive the situation from another.
My experience is not based on ‘an assumption’.

But people have made assumptions about me all my life. In fact
twenty years of assumptions because they did not actually take
the time to ask or listen. They assumpted that I was
‘retarded’ because I had ataxic cerebral palsy. People today
still assume that I am ‘retarded’ – strangers in the street -because I do not fit into their picture of normality.

Well in actual fact I have proved the establishment wrong. So
if they were wrong about me then the likelihood is that were
wrong about other children.

The difference between us is not about being rational or irrational. The difference between us is about being open minded or closed minded.

Is it rational – to deny children and adults the means by which to
communicate because ‘a few research studies’ failed to produce
sufficient answers. You consider this rational? Even though
many people now type independently. It seems very irrational to me. You feel it is rational to deny human beings equality on
grounds of disability. Sounds very much irrational to me.

And that does not foister an identity on to a person. To ‘foist’
something on to someone is to ‘inflict something unwanted on to
them’ or to palm off something inferior on to them.

Segregation has been foisted on to countless children; an inferior education has been foisted on to countless children. Inequality has been foisted on to countless children. Social injustice has been foisted on to countless children. Disability labels have been foisted on to countless children.

And are we talking about recent research here or are we talking
about research that is how many years old? Like I stated much
the same as the case for ME - people were closed minded and
would not listen and now the case has been proven.

Richard
stanley seigler
October 17th, 2009
19:38:11

No Psychics (NPs) say re

re: it was what the FACILITATOR saw that was reported.

tood-etals base denying many on the spectrum on this and similar test results…how do they explain, eg, sue rubin completing college…do they deny the innate ability of carly…how do they explain a nobel prize physicist championing FC…do they believe them psychics

NPs, would you provide details of test which lead you to incorrectly believe Richard is irrational…

BTW there are days my daughter will not FC…screams and throws the machine at me…then there are days (infrequent) she type so rapidly i cant keep up…

FC works…those on the spectrum cant wait for the normal rationals to believe…”perhaps they never will”, vincent…not even on a starry starry nite…

much research is needed…look forward to reviewing details of test to which NPs refers…assume testers knew FCers well…

there is no way any one day, one week of testing, would be valid in testing my daughter…or any on the spectrum i have know over 40 years…

it would be almost like proving general relativity in a day…90 years later and there are still unanswered questions…

re: then I have to assume you aren’t even trying to approach this matter as a rational person.

would NPs and tood-etals condemn many on the spectrum to another 90 years of silence and pain…there may be a seat in ring at the bottom of the fiery pit for them.

in the world of odd balls, einstein, lenny bruce, diogenes, many on the spectrum: NPs, tood-etals are irrational…get out of the normal, rational, greed, ego, box…join the world of beautiful odd balls…

in the meantime if you provide me with details of the TEST we will play rational, todd-etal, games with it…but once out of the box…”oh the places we will go”

in between time you may want to rationally explain elizebeth: http://www.pbs.org/wnet/religi.....poet/4595/

stanley seigler
Tom Smith
October 17th, 2009
20:52:40

Nobel Prize winning Arthur Schalow and his wife supported the communication of their son simply by standing next to him with their hand on his shoulder. Many communicators can type that way but many more need full support…hand in hand.

As for the double blinds and the source of the communication, while it may appear the communication is unconsciously coming from the facilitator there are many other explanations. Science isn’t supposed to be about “appearances” but in the social sciences it often is.

The important point here is in the context of science and autism treatment. Behaviorism has little validity in the treatment of autism but it does function well as a caretaker management tool. It helps structure the environment in a positive way when it works at it’s best. It is also a “command” intervention meaning it is very assertive towards directing the autistic and since autism is a motor disorder it gives the behaviorist an appearance of being able to help and control the autistic. In reality is just aggravates the autistic and does little or no good in helping him function.

FC actually has some of the same components of behaviorism and behaviorists make good facilitators as a result. It requires some assertiveness on the part of the facilitator but not nearly as much as in other behavioral methods and for a much higher and positive goal…communication, which the autistics are motivated for.

If you were to compare behavioral outcomes of FC to any other behavioral intervention, FC wins hands down. Negative behaviors melt away and are gone after a year of a decent FC program. The clients I worked with were adults and had been on meds most of their lives. After a year of FC, ALL of them were off their meds.

Another benefit to FC is that NOT everyone has to do it in lockstep like with behavioral programs. If you don’t believe it or think it unethical you don’t have to do it. It’s much less unethical than behaviorism and caretaking workers were forced to do that.

Anyone with extensive experience in treating autism who was exposed to both methods, FC or behaviorism, would come away supporting FC.

Historically behaviorism has been ridiculed and abolished in many other fields where treatment is done, particularly with mental health clients in the Eighties. In autism it has some efficacy, as I said, as a management tool for caretakers and workers but it is pure pseudoscience to claim it cures or helps autistics in any meaningful or measurable way.
Richard
October 18th, 2009
00:39:52

I am wondering why one picture was shown to the facilitator and
another to the typist – if this was the case – why bother to
show a picture to the facilitator? And were the typists shown the
picture at the same time as the facilitator or beforehand? And were the typists screened before the study for Scotopic Sensitivity – because they would have possibly seen parts of a picture rather than the whole or the picture could have broken
up. And typing withor without support to communicate is not the same as looking at a picture and typing to identify it. One would have to question the light in the room – was it natural light or artifical – if it was artificial it would have added
extreme stress to someone with SS and also was there a machine to deaden white noise? Was the room carpeted to deaden sound or was
it in a room where sound would echo.

How many typists were included in the study and was it
explained to them before hand that they would have to
identify a picture. Were the typists children or adults?

Personally I have never used typing with or without support at this level. I covered word and picture matching pre school with pictures and word cards.

Richard
Richard
October 18th, 2009
01:05:01

Tom the ‘behaviour modification’ program in special education in the UK for children would have been different to your experience.

Richard
Tom Smith
October 20th, 2009
18:24:56

Good points Richard about the double blinds. We’ve talked about them ad nauseum on forums I own, or have been on with scientists present, and none of them raised those issues. Most of this has very little to do with science but more to do with people’s agendas. One of the legitimate problems with FC was how it was promoted as “valid” and making a quick goal of independence. The valid part resulted in false accusations and people going to jail unjustly and for pushing people into college before we understood better what was happening with autism and the FC method. As for independence, most auties just can’t or won’t do it.

As for behaviorism… I worked long enough doing it to know both it’s limitations and more importantly the huge potential for abuse and unethical treatment. It’s a truly nasty treatment modality and should be banned in autism, or at least heavily regulated, which was the case where I worked. But even then it caused major problems both in ethics and staff dynamics. When I first started working in a behavioral program for autistics called “The Intensive Treatment Center” (ITC) in 1979 I almost quit over the unethical nature of the whole thing. I probably should have but rationalized at the time that the auties needed me and it would be better me doing that stupid stuff than someone meaner.
Richard
October 21st, 2009
10:01:21

As I said Tom it would be hard to identify a picture or even
a word if it is dancing around, jumping out of sight, or
one experiences total wipe out. But that does not mean that one cannot type to communicate. That does not mean that one
cannot keep going and develop language. It just makes it
harder.

My typed language changed dramatically in the space
of a week after I was diagnosed with Scotopic Sensity Syndrome
and prescribed tinted lenses. They calm the whole environment.
In the UK we use a different system to Irlen lenses – Cerium
Technology developed by Professor Arnold Wilkins.

As to behaviour modification I agree with you in the hands
of the wrong people it is open to unethical treatment and
should be banned. It has no place in modern day society.

Richard
Richard
October 21st, 2009
13:36:44

Tom,

re: ‘As for independence, most auties just can’t or won’t do it’.

‘Autism’ is a disability label. Some people are happy with
wearing ‘labels’ because it gives them a sense of identity others
like myself prefer to be seen as human beings.

And we will never know how many people would have typed independently because they were denied access to communication.

If a child has been denied an education how can they possibly
make up for that lost time in a short period? The goal of
independence was a goal that was set but how realistic was it
given that each person was an individual and would have had
different educational needs? It was a goal that was achievable
for some given the time for it to be implemented fairly. Now
we have lost all that information.

And people lie and make false statements verbally in mainstream but we do not take away the communication of other people or deny them access to communication because of it.

Richard
stanley seigler
October 21st, 2009
17:58:29

richard say re

re: As to behaviour modification I agree with you in the hands
of the wrong people it is open to unethical treatment and
should be banned. It has no place in modern day society.

COMMENT
probably getting off FC topic…but perchance worthwhile to reminds parent/stakeholders of the ultimate ABA program and it only cost $240,000 per year…no greed here just proven ABA techniques.

read all about it…School of Schock:
http://www.motherjones.com/pol.....hool-shock

[MJ article clip]
Every time he woke from this dream, it took him a few moments to remember that he was in his own bed, that there weren’t electrodes locked to his skin, that he wasn’t about to be shocked. It was no mystery where this recurring nightmare came from—not A Clockwork Orange or 1984, but the years he spent confined in America’s most controversial “behavior modification” facility.

stanley seigler
Tom Smith
October 21st, 2009
20:39:03

Good points Richard…I agree. I would add that the best foundation for developing independent typing or teaching any skills would be a good FC program. Communication first everything else later.

As for behaviorism, I and others warned parents on these internet forums back in the Nineties some of the blowback they could expect if they went the ABA route. They are experiencing it now yet the new parents keep getting sucked in. Not to mention the horror to the autistics. I use labels as short hand Richard but agree that individuals hate them.
Richard
October 21st, 2009
23:15:25

Tom, each person is an individual and what meets the needs of one person would not necessarily meet the needs of another. I feel that my communication developed along side main stream College studies because it was where I felt intellectually challenged. But then I had learnt all the basics at a small child. I think any FC program would have to consider the educational needs of the individual.

Unfortunately my parents were not even aware that the school had a behaviour modification program at the time of my entry to
the school. And once they realised they removed me from the
school.

I always try to make the point when using the word ‘autistic’
that I perceive it as a ‘disability label’. I also make it
clear that I do not identify with the word and do not consider
myself to be part of a disability concept. And I adhere to
the same rule for others in that I consider they deserve the
same respect. I feel the only way forward for people under the umbrella of disability is to challenge the concepts and the labels.

Richard
Laurentius Rex
October 21st, 2009
23:41:07

I am not afraid of the lable “disabled” because I refuse to see it through the same spectacles (Irlen lenses or not, mine are not Irlen they are “Larry”) as the arschlochischtischen artztlichkeit of the medical fraternity who think they “own” us all.

I own Autism, the word does not belong to one side at all and those of us who run from it are those who are internally oppressed by others ideologies not our own.

Ever hear the term “temprorarily able bodied” that is the true human condition as you get older you wear out, some of us faster than others, some of us depending on what we started out with.

So What

To Deny the disability concept is actually to buy into the negative less than perspective.
Richard
October 22nd, 2009
09:41:03

Laurentius Rex,

I do not buy into the ‘disability’ theory I spent
too many years in special education and witnessed the destruction caused by ‘disability labels’ to wish to be part of it. I refuse to be ‘labelled’. If other people wish to use the term ‘autistic’ to refer to themselves that is their choice
but I crushed everything I saw as ‘autistic’ into the ground.
As I said I do not identify with it.

Richard
stanley seigler
November 1st, 2009
19:17:27

Richard say re

re: I can only re-iterate the points I have raised. I have never suffered at the hands of typing or fc but I certainly suffered at the hands of behaviour modification and segregation. As I stated none/or very few of the children at either schools I attended went on to higher things.

COMMENT
the todd-etals (FC doesn’t work behaviorists who call it snake oil) are on the wrong side of history…in company with the flat-earthers, the lobotomisters, bettelheimers…and;

for behaviorists who only make $10-$12 per hr (per todd) to maintain these rates (or maintain a lucrative livelihood) it would behoove them to incorporate a form of FC into their programs…the behaviorists with open minds and some vision have…

as a minimum, todd-etals should consider the approach of a respected PhD psychologist: “I adore Doug Biklen. I’m not very sure of FC, but if parents want to assist their child that way and it is not harmful, who am I to decide differently? Best of all, FC has gotten more interest in things like language devices and computer use – and that’s great!”

and/oh/btw, JRC’s Israel, the ultimate behaviorist, makes around $400,000 per (see MJ article)...no “venal pecuniary motives” here…wonder if israel’s wife (JRC’s sister, tobinworld in CA) works for $10/hr.

Perhaps with more open minded attitudes and research re the innate ability some/many (most/all?) on the spectrum have to learn w/o formal education, as mentioned: terms like “todd-etals” and “petulant third grader” will be eliminated …and then;

combinations of behavioral and FC type programs can be devised…and maybe one day FAPE will be SOP…hope springs

stanley seigler
Tom Smith
November 2nd, 2009
22:00:28

That the behaviorists haven’t incorporated FC is not only a travesty to science but to their own approach…”Applied Behavioral Analysis”. They can’t even do behaviorism right! The only explanation is bias, political, and money grubbing. None are very scientific motivations.
stanley seigler
November 2nd, 2009
23:10:59

the travesty is the untold thousands on the spectrum imprisoned in bettelheim’s empty fortress due to “bias, political, and money grubbing” motives of the todd-etals…

not all behaviorists…some are FCers at heart…the ones todd says have been tricked by “amazing feats, college degrees, scripts, awards of FC Stars and abounding testimonials”... (see previous todd post to this blog)...ie;

the stupid fools, so easily tricked by the likes of a petulant third grader.

stanley seigler
stanley seigler
November 7th, 2009
00:54:17

Todd say re:

re: What interesting rhetoric.

Indeed interesting

re: We should all chafe the sound of a graduate of Harvard Law School casting aspersions on the honest work of someone [a paid expert witness] coming to the aid of accused defendants in an American courtroom. It does not matter if those defendants are accused of littering or of the most heinous sexual crimes. It does not matter if those defendants actually did the thing or not. An adequate defense is not only a right under the U.S. Constitution, but an absolute necessity if we are going to even begin approach a balance between the massive power of the state and often very limited resources of the accused individual. Nothing reminds us of the disparity of power I speak of like seeing a defendant, technically said to be innocent, jailed without bond, transported to hearings in shackles and dressed in embarrassing coveralls, deprived of income, limited in contact with friends, loved ones, and counsel, completely powerless to do anything similar to those who have brought the charges. Such was the case in Michigan FC matter last year. [for context see todd post]

COMMENT

OTOH perhaps…

We should all chafe the sound of an arrogant PhD behaviorist casting aspersions on the honest work of parents (what do they know compared to todd-etals) coming to the aid of those condemned lifetimes of silence in bettelheims empty fortress.

It does matter untold thousands are condemned to life times of silence by tood-etals.

An adequate means of communications is not only a right under the U.S. Constitution, but an absolute necessity if we are going to even begin approach a balance between the massive power of the state and often very limited resources of the individual with special needs…ie, freedom and justice for all.

Nothing reminds us of the disparity of power I speak of like seeing those on the spectrum (and all w/ special needs) being, by myopic behaviorist, denied their right to communicate…transported to hearings (tests) in mental shackles and dressed in embarrassing coverall labels, deprived of income, limited in contact with friends, loved ones, and counsel, completely powerless to do anything similar to those who deny them a means to communicate…charged with incompetence, disability, retarded.

Such was/is the case of untold thousands on the spectrum over the decades.

And/oh/btw…speaking of the range of crimes from littering to the most heinous sexual crimes…wonder whats tood-etals position is on the torture performed by the arch behaviorist at JRC…do they condemn torture with the same vitriol (it does not work) as they do FC…

There is a ring at the bottom…hope there is justice…

stanley seigler