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 
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.
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.
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.
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
Arthur said:
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”.
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
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
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
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
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
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.
“where does a neurodiverse skeptic stand?”
Once again, I stand for checking your facts before posting them.
I guess you don’t.
Morgan
Morgan – anything constructive to add about the FC debate? No? Then I guess you stand for trolling….?
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
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.
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.
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
Who are you, and what have you done with Larry? 🙂
Morgan – please cease the off topic trolling, but thanks for the advice on FC. Can I ask what your interest in the subject is?
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
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.
Did that sound kind of creepy to anyone else?
I’m sorry, but I’m one of those “seeing is believing” kind of guys.
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.
@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.
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.
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
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.
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
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.
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
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.
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”.
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.
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.
>> 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.
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.
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.
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.)
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
@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.
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”.
@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.
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
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.)
“Even very abled-body people produce typos from time to time”
It’s called being drunk in charge of a keyboard.
>> … 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. 🙂
[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
>> Valid research should have stared in the 60s…
But researchers were flooded with cases of Facilitated Communications chalatins?
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
[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
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.