An article in yesterdays Longmont Times raised (for me anyway) the issue of Facilitated Communication.
This is an issue that is, in its own way, just as divisive as the vaccine issue amongst sections of the autism community and science. You see, some autistic and autism advocates believe passionately in the efficacy of FC whilst science largely rejects FC:
Current position statements of certain professional and/or advocacy organizations do not support the use of Facilitated Communication due to their objections that it lacks scientific validity or reliability. These organizations include the American Speech-Language-Hearing Association, Association for Behavior Analysis International (ABAI), American Academy of Child and Adolescent Psychiatry, and the American Association on Mental Retardation. ABAI calls FC a “discredited technique” and warns that “its use is unwarranted and unethical.”
The Association for Science in Autism Treatment reviewed the research and position statements and concluded that the messages typed on the communication device were controlled by the facilitator, not the individual with autism, and FC did not improve their language skills. Therefore, FC was reported to be an “inappropriate intervention” for individuals with autism spectrum disorders
The section of the autism community that accepts FC as a valid technique is largely the neurodiversity movement in who’s ranks I place myself. But is this making me a hypocrite? I place such firm emphasis on science when it comes to vaccines I can do no less in other areas. But on the other hand voices I trust implicitly within the neurodiversity movement speak out in favour of FC. Amanda Baggs, Kathleen Seidel and (I think) Michelle Dawson to name but three. * [correction: Michelle is not an FC supporter] *
So what do I do? Should I be making a call for more studies (sounds familiar!) or dismissing the voices of autistic people I trust on the issue or dismissing established science?
Or is there another option? What are your thoughts on FC? A decent debate would be useful for lots of people I think.
Left Brain Right Brain 
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
Sorry guys that should have read “but he ignored me” not “nut”
– still making typing errors.
Richard
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.
ABA is science-certified…hmmm.
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
>> 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.
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.
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
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.)
>> …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.
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”.
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
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
>> 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.
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
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
>> 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.
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.
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?
>> 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.
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
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
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
>> 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.
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.
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
>> 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.
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.
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.
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.
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.
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
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.)
Where do they issue a licence to be an A*** hole?
Thank you Richard, I did.
Here it is, for those who are interested also.
http://blog.donnawilliams.net/2007/06/30/an-interview-with-autistic-fc-pioneer-and-author-richard-attfield/
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.
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.
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
Rose, thank you for taking the time to read the article.
There are others on line in the Tap magazine (The Autism
Perspective).
Richard
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
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.
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
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?
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.
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.”
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
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
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
tom smith, pls dont refer to me in any of your posts here or else where…
thanks, stanley seigler
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.