3/25/2010

Facilitated Communication: A Review of the Literature


The false and exaggerated claims associated with facilitated communication have been exposed.” (Miles and Simpson, 1996)

Facilitated communication is an issue of contention in some areas of the autism community.  Part of the problem is what is meant by facilitated communication. There is little doubt that most people rely on authorities and various heuristics to ascertain the validity of claims rather than taking the time to investigate the research findings for themselves. Even when individuals are willing to take the time and make the effort to wade through research findings, a dizzying array of possible sources awaits them in most subject fields.

Research literature grows exponentially; we are adding to available knowledge at a whirlwind rate and it is becoming impossible to be a qualified generalist. It can even be a daunting task to be a specialist.

As such, even dedicated and skeptical show-me parents are faced with an all but impossible task: how to decide on treatment and therapy modalities for their children. Which experts do you rely on? Is being the dean at a university enough to convey authority and legitimacy (Bilken, major proponent of FC)? Is being a tenured instructor at universities and a scientist who publishes research enough (Boyd Haley and Richard Deth)? What about being a medical doctor and researcher (Wakefield and  Krigsman)?

How do parents decide what autism is and what the best way to move forward is to help our children succeed? It is a difficult decision and I empathize with parents who work to do just that and find themselves inundated with people insisting that autistic children are sick, terribly sick, vaccine-damaged and mercury poisoned (buy our products, our way of thinking, and we will recover your child!) or who have a nonverbal, cognitively impaired and noncommunicative child and are sold the idea that inside is a child who is as smart as their non-impaired peers, if only you’ll help at the keyboard (and already knows how to read and the rules of grammar and all that--no need to teach it).

I don’t have any easy answers, but I personally prefer to rely on scientific consensus and a careful reading of the literature before making decisions. Because I’ve read the research on the faultiness of human memory and the unreliability of testimonials and anecdotes, moving stories are insufficient evidence. Looking at the big picture, what studies looking at hundreds and thousands of individuals have found, is the best way to get at the objective truth. It’s still flawed, still imprecise, and so even it must be held with a lack of complete certainty and a willingness to entertain new evidence.

Here, then, is what the consensus of evidence shows as regards facilitated communication.

The idea of facilitated communication is a noble one, and as defined sounds entirely reasonable. Biklen (1991) defined FC as “Facilitated communication involves hand-over-hand or hand-on-forearm support of students as they point to pictures, letters or objects to augment communication. The facilitator does not guide the students to selections but rather stabilizes the student's movements and in some cases actually slows the person's hand as he or she points to a Choice” (p. 163).


The Facilitated Communication Institute at Syracuse University defines FC as “one form of augmentative and alternative communication (AAC) that has been an effective means of expression for some individuals with labels of autism and other developmental disabilities. It entails learning to communicate by typing on a keyboard or pointing at letters, images, or other symbols to represent messages. Facilitated communication involves a combination of physical and emotional support to an individual who has difficulties with speech and with intentional pointing (i.e., unassisted typing).” According to the FCI, “The person who provides support is called a facilitator. A facilitator can be a teacher or other professional, a family member or a friend. This support is highly individualized, based on specific needs. Thus it does not look the same from person to person.”

The institute offers workshops for individuals to learn how to be a facilitator and has a thirteen page pdf on facilitator competencies.

The Institute appears to take into account the overwhelming consensus of scientific evidence that points to the lack of efficacy and legitimacy of facilitated communication (see Mostert, 2001 for a literature review pointing to the lack of scientific evidence regarding FC) and offers these provisos:
It appears that this last sentence is an attempt at appeasement; a mere headnod at the overwhelming scientific evidence demonstrating the failure of facilitated communication as a tool to allow those who are nonverbal to communicate. Notice that there is some admission that there has been negative research while still inflating the amount of confirming studies. Ideally, if proponents of FC were willing to ensure the reliability of the individuals’ communications, they would be amenable to research aimed at verifying authorship and would put in place a system of controls to ensure the legitimacy of each individual’s authorship. They would also acknowledge the potentiality for facilitators to subconsciously co-opt the communication process. While the guidelines above have the ring of sincerity, the overall lack of scientific evidence and the unwillingness to admit the problems makes the institute at best pseudoscientific.



Despite the institute’s affiliation with a university and its staffs’ publications, mainstream science still does not hold that FC has any legitimacy:

Van Acker (2006) writes in Outlook on Special Education Practice rather negatively about FC:
Simply put, facilitated communication is a method of augmentative or alternative communication that involves supporting or "facilitating" the arm or hand of a communicatively impaired person while he or she types out a message on a computer keyboard or other device. FC is predicated on the mistaken assumption that many individuals with severe communicative disorders (e.g., those with autism or severe and profound mental retardation) have a level of "undisclosed literacy" that can be "tapped" through this procedure.” (page 10)

“The American Psychological Association (1994) adopted a resolution regarding FC in which the APA concluded that it "...is a controversial and unproved communication procedure with no scientifically demonstrated support for its efficacy" (p. 1). Nevertheless, FC continues to gamer support of some in the educational community (Gerlach, 1993) and to stimulate other practices that incorporate aspects of FC.” (page 10)

The Facilitated Communication Institute provides a good history of the movement, noting the work of Biklen and Crossley, both of whom are addressed in criticism of FC. Not all of the criticism is negative. Mostert (2001) notes that Biklen “believed that people without communicative ability, generally regarded as lower functioning than those having some use of language for communication, could not be assumed to be lower functioning because of their obvious expressive deficits” (p. 288). This is an important concept and one well worth exploring, although it appears that Biklen may have gotten overzealous in his assumptions that individuals who had received no exposure or formal education (or informal) could somehow be hyperlexic and that FC was the way to expose this. Mostert writes: “The assumptions of FC proponents, while not well formed and severely challenged (e.g., Hudson, 1995; Jacobson et al., 1995; Shane, 1994), have precipitated several empirical reviews of the effectiveness of FC” (p. 288).

The Institute offers a page entitled FC Validation, which most evidence-based individuals would expect to be filled with references to scholarly research showing that FC had indeed been validated in the literature. Instead, readers find a list of links to people who say it works and research that in fact doesn’t validate it. Skepdic notes that “The FC Institute was established in 1992.  It conducts research, provides training to teach people to become facilitators, hosts seminars and conferences, publishes a quarterly newsletter and produces and sells materials promoting FC, including a six-part video series for $50 per video ($250 for the series).”

The AAP (1998) provided the following statements regarding FC in the journal Pediatrics:




(Ziring, pps. 431-432)

The AAP’s recommendation:

(Ziring, p. 432).



The Institute is connected to the School of Education of Syracuse University (where Doug Biklen, proponent of FC serves as dean to said department), and perhaps this is an explanation for the lack of scientific evidence. It certainly points to a weakness in the training of our educators. Having taken education courses both at the undergraduate and graduate levels, I can at least personally attest that it is often not an evidence-based practice, but instead one based on philosophical grounds (see here for an example).

There are tremendous problems with a discipline that is not evidence-based, and for Syracuse University to place the School of Education in the hands of an individual who continues to promote as effective and legitimate a therapy thoroughly discredited is discouraging.  Mostert (2002) notes that special education textbooks are rife with inaccuracies,  writing: “Despite the incontrovertible empirical evidence that facilitated  communication (FC) is a completely ineffective intervention, readers should be aware that it is promoted positively in a current special education college textbook” (p. 239).

Lest readers think that criticism is restricted to the scientific field, even the legal field has weighed in on the lack of credibility for facilitated communication: Gorman(1999) writes “FC is criticized because it lacks empirical support,5 frequently results in accusa-tions of abuse,6 and often raises false hope.7 Despite criticism, Biklen continues to promote FC, and many continue to practice the technique” (p. 518).

Norton (2006), writing in Skeptic, discusses studies that incidentally occurred after 1994 (hmmm, bias that the institute stops with 94?) and their complete rejection of FC’s legitimacy: “These studies, along with many others, failed to validate the claims of FC advocates. 9 The empirical data were clear. It was not the autistic children who were authoring the typed messages, but their facilitators.”

Alferink (2007) is fairly damning in his assessment of facilitated communication:

“Observation of the use of facilitated communication showed that children often were not looking at the keyboard when they typed (Shane, 1994a), a task that is impossible without a reference point as is used in touch typing. Research with appropriate controls showed that it was the facilitator and not the child who was responsible for keying in the messages (Green, 1994; Jacobson, et al., 2005), a finding that has been replicated repeatedly. Yet, facilitated communication continues to be widely practiced by those who are either unaware of this research, or who choose to ignore it.” (p. 22)

There is little doubt that the testimonials offered by proponents of FC can be compelling and heartwarming, just as the stories by parents who believe their children’s autism was caused by vaccine injury can be emotionally overwhelming and harrowing. That doesn’t make the testimonials accurate or reliable. They are anecdote and the product of confirmation bias, availability heuristic and self-justification. Where objective measures cannot validly replicate the assertions, one who is evidence-based and aware of the faultiness of memory and the frailty of the human ego with the individual’s need to reduce dissonance must err on the side of caution and be skeptical of the claims presented.

For example, Brandl (2001) writes a moving testimonial to her four decades of teaching children with impairments. She admits her naivety and lack of supports, her inadequate preparation to deal with the population, and her tremendous desire to make a difference, wonderful admissions to make, as asserting the first three shows a lack of hubris. Her story lets us see how someone who wants to make a difference can reach out for any tool that promises to help her do so and how that intense desire can reduce skepticism and the need for empirical validity. Did FC work for her student population? She says it did, but it never rises above testimonial. Blandl writes:

Most of us agreed we would happily leave our positions if these disturbed but charming kids no longer needed us some day! Dealing on a daily basis with severe self-abuse, aggression, and destructiveness helped me understand why such children could not live at home or attend general schools. But very little was known or understood about autism. In fact, we were still affected by lingering beliefs that it was caused by poor parenting and "refrigerator mothers." This was the latter part of the 1970s and, I believe, one of the better institutions. We knew very little, and we helped very few kids.

Having moved through the educational system over the last forty years and seen the incredible changes in how thinking about individuals with impairments are viewed, Blandl has a frontline perspective, not an objective scientific perspective. FC provides hope, hope that hidden inside “disturbed but charming kids” there’s a normally functioning child waiting to get out who already knows how to read, write, and do schoolwork. Blandl takes readers into her experience as she hears about FC: “Then I heard about facilitated communication (FC). I saw the first TV presentation on this new method being used with individuals who looked and acted so much like many of my former students. I was skeptical but intrigued.

She may assert her skepticism, but she quickly is won over to FC and never looks back. Whether her students improved because of FC itself or because they benefited from the touch and the one-on-one attention is not at all clear. And there is no evidence, since this a teacher’s story. There’s no empirical data and no way to ascertain the legitimacy of the claims. It is an example of why testimonials, stirring as they are, are not and can never be evidence of efficacy. Her dedication and her genuine desire to make a difference, to promote inclusion of these students and her apparent appreciation for these individuals cannot be denied.

There are ways for educators to assess the reliability of the facilitated communication. Kerrin et al. (1998) notes that the claims that the early proponents of FC make regarding autistic individuals and the idea that they are indeed hyperlexic (as Biklen contends) is counter to the diagnostic criteria: “This is particularly remarkable because, according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV; American Psychiatric Association, 1994), one of the defining characteristics of autism is difficulty in communication. The form of the communication disorder ranges from inappropriate use of syntactic forms (e.g., pronoun reversals) or unusual intonation patterns to no speech whatsoever. In addition, individuals with autism often seem to lack a desire to communicate with others.” *While, a lack of desire may be apparent in some individuals, it is not clear that this is true in the majority of cases--the problem here is the temptation to apply the availability heuristic here and recall all the autistic people we know (or ourselves if we are on the spectrum) and assume it to be representative of the full range of individuals on the spectrum. At this point in time, there does not appear to be a clear statistical picture of where most individuals diagnosed on the spectrum would fall on this--nor whether an inability to communicate verbally (through language, either written or oral) is indicative of a lack of desire to communicate. I would caution readers that their natural inclination to leap to a conclusion based on what they can personally recall or think of is not necessarily indicative of objective reality.*

Overwhelmingly, most literature reviews of FC find that it is not a reliable or effective communication tool Study after study denounces its legitimacy. Kerrin et al. found:

 “This study supports the findings of Eberlin et al. (1993), Myles and Simpson (1994), Smith et al. (1994), Vazquez (1994), and others who have tried to discover objective evidence in support of FC. The participants responded more accurately when the SLP/facilitator could see, in spite of the fact that the SLP/facilitator did not think she was influencing the students' responses and did not intentionally do so.

Kerrin et al. goes beyond the question of authorship and suggest that their method could be useful in the classroom setting to determine authorship. The method they use in their study, Kerrin et al. write, provides a “simple yet effective method of assessing authorship of facilitated responses in an actual classroom setting. Replicating the methods used in this study could provide a way for teachers, speech-language pathologists, and others to determine who is really doing the pointing.

Miles and Simpson (1996), noting that the evidence showed that FC was not a valid tool, tested whether it had any value as an educational tool and concluded, after conducting a study to assess its use as a tool that:

“The results of this study clearly do not support FC as an educational tool. Indeed, whether subjects were evaluated via a traditional strategy, with FC, or with the FC control condition, they averaged below-chance performance or only slightly above chance performance in identifying letters, corresponding letters and their sounds, numbers and positional words; and in demonstrating understanding of one-to-one correspondence and matching positional words and objects. Because there were four response options for each task, one would expect the subjects to have a 25% correct response rate on the basis of chance alone. Accordingly, we are of the opinion that the undeniable conclusion is that individuals who participated in the study revealed a failure to demonstrate knowledge of basic, independent academic skills.

Finn et al. (2005) analyzed various forms of treatment for communication disorders based on ten criteria for pseudoscience and found that facilitated communication met 8 of the 10 criteria for pseudoscience: untestable, unchanged, confirming evidence, anecdotal evidence, inadequate disconnected, grandiose outcomes and holistic:

“The largest point of contention in the facilitated communication debates is, essentially, that the demonstrations of effectiveness seem to come from situations in which the facilitator knows the answer or could be the source of the information, and that tests in which the facilitator cannot know the answer tend to show that facilitated communication breaks down (e.g., Mostert, 2001; Shane & Kearns, 1994). This issue appears as arguments that can be described in terms of several of the criteria for pseudoscience: whether claims of facilitated communication’s effectiveness are phrased clearly enough to be testable (Criterion 1; see Mostert, 2001); why facilitated communication’s proponents have allowed it to continue to be used, essentially unchanged, in the face of conflicting evidence (Criterion 2; see Biklen & Cardinal, 1997); whether the support for facilitated communication is based only on confirming evidence (Criterion 3) or anecdotal evidence (Criterion 4), failing to incorporate the conflicting evidence and the evidence from controlled studies (e.g., Mostert, 2001; Shane & Kearns, 1994); and whether adequate proof is provided to support the rather amazing claims that persons with moderate to profound disabilities can write complex language after all (Criteria 5 and 9; see, e.g., Green & Shane, 1994; Mostert, 2001). There are also substantial debates about what Mostert (2001) calls the theoretical or conceptual underpinnings of facilitated communication, including Biklen’s (1990) original explanations that autism is a disorder simply of expression, not of language or cognition; these are debates about whether facilitated communication is disconnected (Criterion 7) from more generally accepted descriptions of autism, mental retardation, and other problems. The debates also clearly address questions related to what facilitated communication’s critics see as grandiose claims (Criterion 9) of almost unbelievable outcomes. The debates about facilitated communication also provide an example, finally, of what the pseudoscience criteria refer to as holistic claims (Criterion 10).” (p. 181).


Even current scientific consensus finds nothing regarding the efficacy or legitimacy of FC has changed, although the rhetoric of its proponents has. Mostert (2010) writes:  "However, the FC literature since 2001 also shows increasing acceptance of the technique, ignoring empirical findings to the contrary. Further, more recent pro-FC literature has moved beyond acknowledging that FC is “controversial” to a working assumption that it is an effective and legitimate intervention" (abstract).

To say one takes a position on the scientific validity of facilitated communication is not the same as deriding the individuals who work with students with impairments and who genuinely wish to help them communicate with the world at large. It’s also possible that where Blandl uses the terminology facilitated communication that in large part she means augmented communication. Where individuals can independently utilize computers and keyboards to communicate, the communication cannot be said to be facilitated. We have moved to a different type of communication. Where consistency in answers can be demonstrated, where authorship can be verified, then I would argue, you have a clear indicator that the individual is using augmented communication, not facilitated.

If facilitated communication appears overall to be the work not of the individual but is instead the agency of the facilitator, why do facilitators insist that the communications are originating from their clients and not themselves? These are not people who are willfully taking advantage of their clients; they are dedicated professionals like Brandl who dedicate their careers to helping the impaired. Wegner et al. (2003) investigated these questions regarding authorship and the facilitators’s states of mind. Wegner et al. found that  their  “experiments render authorship confusion even more starkly, as they show projection of action to others under conditions when the other is entirely inert. In everyday social settings, the processes at work here might continue to apply, however, whenever a person believes that some other agent could conceivably be the source of an action the person has performed” (p. 17).

It is important to remember that we are poor gauges of causality, that we are often unaware of when and how we are primed to give certain answers, and that when we want something badly, we have a way of making the things we believe will occur happen. Wegner et al. found that:

Belief in the possibility of FC brought with it a set of associated perceptions. People who were led to believe, or who happened to be believers, tended then to perceive that they could read the
communicator’s muscle movements. They even reported feeling a pulse coming from the communicator’s fingers when this could not have happened, whereas those who did not believe reported not perceiving movement. Belief in FC provided a context for interpretation of the actions that were produced, allowing the participants to view the answers as emanating from the communicator and not from themselves” (p. 16).

Facilitate communication provides an apparent dead-end. While the use of augmented communication tools should be pursued for children who are unable to communicate orally, it is important to put in safeguards to make sure that the individual using the tool is in fact the one communicating. It is not enough to rely on a facilitators' good intentions and promise that the communication originates with the individual and not the facilitator.* Just as thousands of parents have spun themselves a tale of vaccine-induced damage for their children's autism, along with the cry that thousands of parents can't be wrong, science shows clearly that, yes, they can be and often are. We are none of us infallible and none with perfect recall. We see what we wish to be, and we rewrite our tales to match our present. Parents and educators who want desperately to communicate with non-responsive children have every reason to believe that FC is real and genuine and little reason to openly listen to the science. It's another one of those instances of self-justifying to reduce the dissonance.


*Passage is bolded because readers may miss my conclusion. edited 9:26pm 03.25.10

References:

Alferink, L. (2007). EDUCATIONAL PRACTICES, SUPERSTITIOUS BEHAVIOR AND MYTHED OPPORTUNITIES. Scientific Review of Mental Health Practice, 5(2), 21-30. Retrieved from Academic Search Complete database.

Biklen, D., Morton, M., Saha, S., Duncan, J., Gold, D., et al. (1991). "I AMN NOT A UTISTIVC ON THJE TYP" ("I'm not Autistic on the Typewriter"). Disability, Handicap & Society, 6(3), 161-180. Retrieved from SocINDEX with Full Text database.

Brandl, C. (2001). The Education of a Teacher. Focus on Autism & Other Developmental Disabilities, 16(1), 36. Retrieved from Health Source - Consumer Edition database.

Finn, P., Bothe, A., & Bramlett, R. (2005). Science and pseudoscience in communication disorders: criteria and applications.American Journal Of Speech-Language Pathology / American Speech-Language-Hearing Association, 14(3), 172-186. Retrieved from MEDLINE database.

Gorman, B. (1999). Facilitated communication: rejected in science, accepted in court-a case study and analysis of the use of FC evidence under Frye and Daubert. Behavioral Sciences & The Law, 17(4), 517-541. Retrieved from MEDLINE database.

Inclusion Institutes. Facilitated Communication  Institute. Web.

Kerrin, R., Murdock, J., Sharpton, W., & Jones, N. (1998). Who's doing the pointing? Investigation facilitated communication in a classroom setting with... Focus on Autism & Other Developmental Disabilities, 13(2), 73. Retrieved from Health Source - Consumer Edition database.

Myles, B., & Simpson, R. (1996). Impact of facilitated communication combined with direct instruction on academic performance of... Focus on Autism & Other Developmental Disabilities, 11(1), 37. Retrieved from Health Source - Consumer Edition database.

Mostert, M. (2001). Facilitated Communication Since 1995: A Review of Published Studies. Journal of Autism & Developmental Disorders, 31(3), 287-313. Retrieved from Psychology and Behavioral Sciences Collection database.

Mostert, M. (2002). Teaching the illusion of facilitated communication. Journal Of Autism And Developmental Disorders, 32(3), 239-240. Retrieved from MEDLINE database.


Mostert, M. (2010). Facilitated Communication and Its Legitimacy—Twenty-First Century Developments. Exceptionality18(1), 31-41. Retrieved from E-Journals database.

Norton, L. (2006). Facilitated Communication and the Power of Belief. Skeptic, 12(4), 14-15. Retrieved from Academic Search Complete database.

Van Acker, R. (2006). Outlook on Special Education Practice. Focus on Exceptional Children, 38(8), 8-18. Retrieved from Academic Search Complete database.

Wegner, D., Fuller, V., & Sparrow, B. (2003). Clever Hands: Uncontrolled Intelligence in Facilitated Communication. Journal of Personality & Social Psychology, 85(1), 5-19. doi:10.1037/0022-3514.85.1.5.

Ziring, P., Brazdziunas, D., Cooley, W., Kastner, T., Kummer, M., De Pijem, L., et al. (1998). Auditory integration training and facilitated communication... Pediatrics, 102(2), 431. Retrieved from Health Source - Consumer Edition database.

65 comments:

Nightstorm said...

So what about non-verbal autists that do learn to type independently.

KWombles said...

That's not facilitated communication; there's no question of authorship.

Nor does the research speak to individuals who may have begun with augmented communication, nor been assisted in typing and move to independent typing, perhaps in large part as it's readily evident that the individual is the agent behind the communication.

And where authorship can be substantiated, then the question of facilitator agency does not arise; the problem is that in almost all cases where facilitated communication was tested with controls, there were absolutely clear indicators that the communication came not from the individual but from the facilitator.

speechgrrl said...

How does HALO/Soma rapid prompting compare with the classic "holding the elbow" FC?

KWombles said...

Van Acker (2006) -- cited in the post-- writes this about Rapid Prompting:

"Rapid Prompting Method
An example of these practices is the rapid prompting method (RPM). RPM is an instructional technique
designed to develop academic and communication skills in individuals with severe autism (CBS Broadcasting, 2003).
This intervention program was designed by Soma Mukhopadhyay, a teacher and a mother of a child with autism. RPM elicits responses from persons with autism through a combination of intensive verbal, auditory, visual, and tactile prompts. As in FC, the RPM employs the facilitation of the person's hand or arm as he or she types, points, or writes the responses. To date, PPM has yet to be empirically validated."

This is the only mention of RPM in the scientific literature that I was able to find.

David said...

I have long believed that "facilitated communication" represents an important datum on autistic intelligence. The accepted explanation that the "facilitator" unconsciously guides the subject implies genuine intelligence in the latter. (By analogy, the "Clever Hans" case is accepted as a real demonstration of animal intelligence, just not the kind that was thought at first.) It particularly indicates sensitivity to body language, which by conventional wisdom is an autistic weakness.

KWombles said...

David,

You write: "I have long believed that "facilitated communication" represents an important datum on autistic intelligence."


I'm honestly not sure what you mean here. Where scientific data exists and things can be objectively measured, belief is irrelevant. And facilitated communication that's been demonstrated to show that the facilitator provides answers that do not match the information the individual has shows clearly that the facilitator is doing the communicating.

"The accepted explanation that the "facilitator" unconsciously guides the subject implies genuine intelligence in the latter."

Okay, no it doesn't. This doesn't even make sense. Who's accepted explanation that the facilitator is doing this? And the facilitator doing the communicating doesn't say a thing to the individual's intelligence. I'm not disputing the likelihood that the traditional IQ tests are poor indicators of an autistic individual's intelligence, but that is not what they measure. They measure the likelihood of success in academic settings. And even then, they can't measure motivation to succeed.


"(By analogy, the "Clever Hans" case is accepted as a real demonstration of animal intelligence, just not the kind that was thought at first.)"

The horse read his owner's body language.


"It particularly indicates sensitivity to body language, which by conventional wisdom is an autistic weakness."

There is no scientific evidence that FC demonstrates the autistic individual's sensitivity to body language. What there is scientific evidence for is that the facilitator is doing the talking, not the individual. I would think that this would be incredibly offensive. Imagine being the individual who has someone facilitating for them. Imagine that they are fully aware of what's going on, wish to communicate and cannot. Now imagine someone starts to help them, and to their horror, the facilitator communicates things that they are not saying, thinking.

If one is committed to getting at objective reality, one goes where the science leads, whether one likes it or not. In fact, personal preferences and beliefs get in the way. Where there is a way to test hypotheses and examine data, beliefs make no logical sense whatsoever.

David said...

Kim,
My point is simply that responding to "body language" qualifies as a display of intelligence. If it misleads (as in the horse that appeared to do math), the error lies in recognizing the KIND of intelligence.

KWombles said...

David,

Okay, but there's no indication that responding to body language has anything to do with facilitated communication, with the exception that the facilitators and proponents of FC argue that it is the facilitators responding to the individual's body language, not the other way around as you're indicating.

The illustration that several researchers make regarding Clever Hans has nothing to do with the individual who has an impairment reading someone else's body language. It has to do with the facilitator not recognizing his/her agency in causing the communication by the other individual.

Wegner et al. write: "Under certain conditions, people lose the sense of authorship for their own actions and attribute them to agents outside themselves. This was the case in 1904 when trainer Wilhelm von Osten exhibited Clever Hans, a horse who appeared to answer questions correctly by tapping a hoof."

They continue:
"The cases of FC and Clever Hans illustrate authorship confusion
because they feature the projection of intelligent action to agents
that are unlikely to be capable of such action. Our experiments
render authorship confusion even more starkly, as they show
projection of action to others under conditions when the other is
entirely inert. In everyday social settings, the processes at work
here might continue to apply, however, whenever a person believes
that some other agent could conceivably be the source of an
action the person has performed. Wegner (2002) has suggested that
such circumstances arise when people frame their own contribution
to a coaction as inaction, stimulation, reaction, or
collaboration.
The belief that one is inactive is inherent both in FC and in von
Osten’s interaction with Clever Hans."

Bebko and Perry (1996) write:
"While direct influence by the experimenter on responding was unlikely, it is possible
that the experimenter may have been overly generous in interpreting
ambiguous responses, such as when students pointed between a correct and incorrect response, or may have unintentionally provided feedback to the
child or facilitator about accuracy during responding (analogous to a
"Clever Hans" effect)."


Bebko, J., & Perry, A. (1996). Multiple method validation study of facilitated communication: II. Individual differences and subgroup results. Journal of Autism & Developmental Disorders, 26(1), 19-42. Retrieved from Psychology and Behavioral Sciences Collection database.

David said...

Perhaps I have misunderstood how FC is performed... It's been my understanding that (in theory) the facilitator physically supports a disable person's hands while they write or type. What you are describing sounds more like a "cold reading" routine. In either case, there is an obvious potential for a "Clever Hans" scenario, where the subject simply does what the "facilitator" unconsciously directs them to do.

Incidentally, I think it is beyond serious question that a subject's "motivation" in these things is a desire to please the other party. Thus, I think it is a mistake (or at least oversimplification) to see the subject as wholly passive, or think of them as a "victim" who would if possible object. The more realistic description would be something like "codependent enabler".

KWombles said...

Sigh. I think we're arguing at cross-purposes. The research overwhelmingly shows that it is the facilitator creating the communication, not the individual. It goes beyond assistance; the facilitator is holding the individual's hand and guiding the movement.

They've used different facilitators, asked questions that only the individual would know the answer to, and other ways of assessing authorship. In all but a couple cases, the communication was clearly demonstrated to be coming from the facilitator. It is not a matter of the individual being like Clever Hans. It is a matter of the facilitator being like Clever Hans' handler and not realizing he/she was the agent behind the communication.

I have most of the research articles saved on my computer and would be happy to email them to you if you are unable to access the research literature.

Clay said...

Well, it's good to see the subject discussed intelligently. Me, I'm not actually involved, just a casual observer.

David said...

"It is not a matter of the individual being like Clever Hans. It is a matter of the facilitator being like Clever Hans' handler"

I think that's begging the question: If the analogy holds for one side, why not the other?

The bottom line to me is that even following cues without full comprehension takes a kind of intelligence.

KWombles said...

David,

Because your supposition has nothing to do with what the empirical evidence shows regarding facilitated communication.

The research is not questioning the intellectual capabilities regarding the individual who is nonverbal. It is looking at whether the communication is coming from the nonverbal individual or the facilitator. In less than a handful of cases, it has been shown that the communication is unequivocally from the facilitator and not the nonverbal individual.

David said...

I don't disagree that the facilitator provides any "message" involved. I just think there are open questions about what kind of interaction occurs between the facilitator and subject. I think we've worn down this line of discussion.
One more thought I have had is that FC is pretty much a form of "automatic writing" (the phrase "automatic writing by proxy" has occurred to me), which is a strange and interesting phenomenon itself. So, this is another level where FC would be worth study, if the research is based on the right questions.

KWombles said...

Sigh. Yes, we may have worn down this particular subject; I don't get the sense that you are speculating from a position of having read the literature, but are instead shooting from the hip, which leads to an apparent contradiction in how you are defining facilitated communication and how I am.

I'm all for speculation on things that are unknowable or unknown; it can be tremendous fun to sit around and bullshit about stuff like philosophy and the ultimate meaning of life, but where scientific evidence exists in abundance, I'm not interested in speculating on things that have already been investigated and determined. If it's knowable, then you take the time to read the research and see what has been discovered. From there, if one wants to speculate from that base on additional avenues of investigation, that's fair game and exciting stuff.

David said...

I admit I haven't read more than a casual selection of literature on FC. But, I have read quite a bit about automatic writing, "cold reading" and the like. I think these fields of inquiry could be usefully synthesized with FC criticism.

KWombles said...

David,

If you were approaching it from the area that it were the facilitator doing the cold reading or the automatic writing, perhaps; except for the fact that if they were, they still don't get it right; where the individual is given different information than the facilitator is, the facilitator communicates the information he/she has been provided, not the information the individual was given.

Plus, technology exists that makes the need for an individual to help guide someone's hand completely unneeded: individuals can wear glasses that are equipped to recognize the individual's gaze at a computer screen and select the icon being gazed at.

There is no justification for the use of an invalidated, debunked modality, especially when technological advances allow assisted communication devices with no questions regarding authorship.

Arthur Golden said...

Ms. Wombles,

1. I just noticed and quickly read this blog entry and brilliant insights. While I appreciate the effort involved in preparing your blog entry, I do wish to comment when I have some time. As I wrote several hours ago in my comment (13) to another blog entry: In the last day of Pesach cleaning and then celebrating the major holiday of Pesach, I will not be able to post another comment here for about four more days, no matter what brilliant insights are put on your blog.

Art

Arthur Golden said...

Ms. Wombles:

C.2. Thank you for your tremendous effort in preparing this blog entry about Facilitated Communication. As is common for many autistics (B.13.d.), I have difficulties with executive function, and although I do not agree with everything you wrote, your writing provides a needed template for me to express my own thoughts. You uncovered information that I had not found, despite my autistic obsession to research Facilitated Communication on the internet since I gained access to the internet in 1997. On the other hand, I believe that I have much relevant information to give to you, which may take a while to do in this format. At this point, so far as I know, I do agree with everything you wrote on your main subject of the "anti-vaxxers" even though I have not yet read through all of your hundreds of blog entries.

C.3. Your previously stated position that "the acceptance of FC ... is against all accepted scientific evidence" which seems to continue to be your position in this blog, is questioned by me as not being factually accurate.

a. In a previous blog entry, you wrote about Facilitated Communication ("FC") [your comment #120 of March 21, 2010]:

1) "For the record, the acceptance of FC as an appropriate treatment/therapy/communication modality is against all accepted scientific evidence and is one I personally do not support."

b. In this blog entry you start with:

2) “The false and exaggerated claims associated with facilitated communication have been exposed.” (Miles and Simpson, 1996)

c. Similar statements in this blog entry include:

3) Here, then, is what the consensus of evidence shows as regards facilitated communication....

4) The Institute appears to take into account the overwhelming consensus of scientific evidence that points to the lack of efficacy and legitimacy of facilitated communication (see Mostert, 2001 for a literature review pointing to the lack of scientific evidence regarding FC)...

5) It appears that this last sentence is an attempt at appeasement; a mere headnod at the overwhelming scientific evidence demonstrating the failure of facilitated communication as a tool to allow those who are nonverbal to communicate. Notice that there is some admission that there has been negative research while still inflating the amount of confirming studies....
(continued on next posting)

Arthur Golden said...

3.c.6) (continuation of same comment) Despite the institute’s affiliation with a university and its staffs’ publications, mainstream science still does not hold that FC has any legitimacy:...

7) The Institute offers a page entitled FC Validation, which most evidence-based individuals would expect to be filled with references to scholarly research showing that FC had indeed been validated in the literature. Instead, readers find a list of links to people who say it works and research that in fact doesn’t validate it....

8) There are tremendous problems with a discipline that is not evidence-based, and for Syracuse University to place the School of Education in the hands of an individual who continues to promote as effective and legitimate a therapy thoroughly discredited is discouraging....

9) Norton (2006), writing in Skeptic, discusses studies that incidentally occurred after 1994 (hmmm, bias that the institute stops with 94?) and their complete rejection of FC’s legitimacy: “These studies, along with many others, failed to validate the claims of FC advocates. 9 The empirical data were clear. It was not the autistic children who were authoring the typed messages, but their facilitators.”
...
10) Where objective measures cannot validly replicate the assertions, one who is evidence-based and aware of the faultiness of memory and the frailty of the human ego with the individual’s need to reduce dissonance must err on the side of caution and be skeptical of the claims presented....

11) Overwhelmingly, most literature reviews of FC find that it is not a reliable or effective communication tool Study after study denounces its legitimacy....

12) Even current scientific consensus finds nothing regarding the efficacy or legitimacy of FC has changed, although the rhetoric of its proponents has. Mostert (2010) writes: "However, the FC literature since 2001 also shows increasing acceptance of the technique, ignoring empirical findings to the contrary. Further, more recent pro-FC literature has moved beyond acknowledging that FC is “controversial” to a working assumption that it is an effective and legitimate intervention" (abstract)....[With my great appreciation to you for finding this 2010 article, did you actually read this 11 page article? With my autistic obsession, I just spend $30 to buy this article and have started to read it – I notice that the literature search is only through May 2008 and foreign language literature is excluded!]
(continued on next posting)

Arthur Golden said...

3. d. (continuation of same comment) I realize that your more detailed statements in this blog entry about FC are not as absolute as your original one sentence position on FC, but you offer none of the scientific evidence for the acceptance of FC even though over 2 days before you posted this blog entry on FC, I made the following comment on even another blog entry because you had closed the blog entry where you made your original statement:

I do not understand the rational basis for the use of the word "all" in your statement "...the acceptance of FC as an appropriate treatment/therapy/communication modality is against all accepted scientific evidence..." I have no idea about your personal knowledge of the scientific evidence on the acceptance of FC. I do know this use of the word "all" in connection with "scientific evidence" is very common in many statements found on the internet, especially from persons identified as skeptics. Did you just rely on these numerous statements repeated so often by others or do you have personal knowledge of the scientific evidence on FC? As an example, below is some information of my personal knowledge of the scientific evidence on FC.

Since I have had access to the internet in 1997, I have been obsessed with researching information on Facilitated Communication, including extensive information about "scientific evidence" for the acceptance of FC. I must admit that I do not understand your use of the modifier "accepted" before "scientific evidence" but I do know that "scientific evidence" for the acceptance of FC is published in peer-reviewed scientific journals and I know there are many such articles which I have read in full, not just the abstracts. I also know there are articles for the acceptance of FC in peer-reviewed scientific journals in foreign languages such as Italian and Spanish which I cannot understand the foreign languages. By the way, I first became aware of the term Facilitated Communication when Professor Emeritus Gunnar Dybwad of Brandeis University sent me in September 1990 a photocopy of the August 1990 article about FC (but not formal scientific evidence) of Professor Douglas Biklen published in the Harvard Education Review. My own son Ben first tried out FC in February 1991 with speech therapist Marilyn Chadwick from Syracuse University.

My personal experience, not just information from reading peer-reviewed articles, includes personally knowing the lead author of a 1995 peer-reviewed article for the acceptance of FC - Dr. Michael Weiss, PhD in psychology from Harvard University. Dr. Weiss personally administered an IQ test to my son Ben in the summer of 1993 using FC which showed at least normal intelligence, in contrast to standard administration of the same WISC IQ test by Dr. Mary Cerreto in December 1991, which resulted in an IQ score of about 25. Another named author of this 1995 scientific study of FC is Dr. Margaret Bauman, who recently became the head of a new health clinic for autistic adults at Massachusetts General Hospital of Boston, after receiving a grant from the Nancy Lurie Marks Foundation which from memory I believe was about thirty million dollars. I also know the main subject of this case study in the 1995 peer-reviewed article, then 13 year-old Kenny Affonce Jr., because I was asked to go to his school before the article was published to be his facilitator to discuss his theological questions, done in the presence of his individual teacher Brenda Silva, who about that time was awarded Teacher of the Year at the national convention of the Autism Society of America.

e. Of course, the above section d. was not appropriate on the other blog entry so you did not comment there. But it is appropriate here and I would appreciate you feedback before I make any further comments on this blog entry about FC.

Art

Arthur Golden said...

Special Notice

Facilitated Communication comments of Arthur Golden can be found on 4 blog entries of Ms. Kim Wombles, now referenced with capital letters A,B,C & D. A is closed to comments (unnumbered comments and comment sections A1 - A20). With the posting of C (with wordfile of original blog entry of pages 1-8 and references on page 9) & D, no further comments should be posted by Arthur Golden to B (with comment sections A21 and B1 - B14). Arthur Golden plans to post comments on C. and then on D.

A.

http://counteringageofautism.blogspot.com/2010/03/ari-neeman-doesnt-divide-autistic.html

Ari Ne'eman Doesn't Divide the Autistic Community (They're Doing That All on Their Own)
Tuesday, March 16, 2010 by Kim Wombles

B.

http://counteringageofautism.blogspot.com/2010/03/in-autism-world-parents-positive-coping.html

In the Autism World: Parents, Positive Coping, and teh Interwebz
Saturday, March 20, 2010 by Kim Wombles

C.

http://counteringageofautism.blogspot.com/2010/03/facilitated-communication-review-of.html

Facilitated Communication: A Review of the Literature
Thursday, March 25, 2010 by Kim Wombles

D.

http://counteringageofautism.blogspot.com/2010/03/so-if-facilitated-communication-has.html

So if Facilitated Communication has been shown to be Pseudoscience, What's a Parent to Do with a Nonverbal Child?
Friday, March 26, 2010 by Kim Wombles

Arthur Golden said...

Ms. Wombles,

C.3. (continued) f. After reading through the 2010 Mostert article, I have a question to you before further discussing this article. You cite in your references a quantitative study discussed in detail in the 2010 Mostert article:

Wegner, D., Fuller, V., & Sparrow, B. (2003). Clever Hands: Uncontrolled Intelligence in Facilitated Communication. Journal of Personality & Social Psychology, 85(1), 5-19.

At the beginning of your blog entry you state:

"Looking at the big picture, what studies looking at hundreds and thousands of individuals have found, is the best way to get at the objective truth."

Can you tell me about how many individuals who were nonverbal autistics or with other disabilities were included in this study both you and Mostert cite?

C.4. "nonverbal, cognitively impaired and noncommunicative child" – "non-responsive children"

[Since I will not be able to post comments for 4 of the next 5-1/2 days, I have decided to post this additional comment 12 hours after C. 2.& 3. were posted even though no one has replied yet.]

a. At the beginning of this blog entry you refer to 1)"nonverbal, cognitively impaired and noncommunicative child" and at the end you refer to 2)"non-responsive children." The full paragraphs that contain these phrases are:

1) How do parents decide what autism is and what the best way to move forward is to help our children succeed? It is a difficult decision and I empathize with parents who work to do just that and find themselves inundated with people insisting that autistic children are sick, terribly sick, vaccine-damaged and mercury poisoned (buy our products, our way of thinking, and we will recover your child!) or who have a nonverbal, cognitively impaired and noncommunicative child and are sold the idea that inside is a child who is as smart as their non-impaired peers, if only you’ll help at the keyboard (and already knows how to read and the rules of grammar and all that--no need to teach it).
2) Facilitated communication provides an apparent dead-end. While the use of augmented communication tools should be pursued for children who are unable to communicate orally, it is important to put in safeguards to make sure that the individual using the tool is in fact the one communicating. It is not enough to rely on a facilitators' good intentions and promise that the communication originates with the individual and not the facilitator.* Just as thousands of parents have spun themselves a tale of vaccine-induced damage for their children's autism, along with the cry that thousands of parents can't be wrong, science shows clearly that, yes, they can be and often are. We are none of us infallible and none with perfect recall. We see what we wish to be, and we rewrite our tales to match our present. Parents and educators who want desperately to communicate with non-responsive children have every reason to believe that FC is real and genuine and little reason to openly listen to the science. It's another one of those instances of self-justifying to reduce the dissonance.(continued on next posting)

Arthur Golden said...

(continuation of same comment)

b. My 38 year-old son Ben is clearly nonverbal, but what do you know about Ben being cognitively impaired, noncommunicative and non-responsive? What is your personal experience with "nonverbal, cognitively impaired and noncommunicative child" or "non-responsive children"? I need your answers before I can further comment intelligently on your blog entries on FC.

c. After not seeing any autism experts since leaving the U.S. in 1994, over 15 years later my son Ben needed a report about his condition in order to obtain health insurance. Providentially, I found Psychiatrist Dr. Rafael Eidelman, reported to me to be the leading professional expert on autism in Israel, who prepared in Hebrew a 2 page report, dated 6 October 2009 (the date of the 45 minute observation of Benjamin Ethan Golden) but actually received 11 October 2009. Following is the English translation prepared by my wife of the sections of this report (which cost me $1,200) that relate to the question in b. with one phrase intentionally deleted:
"[Benjamin Golden] is 37 years old, born in the US, lives in Israel, is unmarried...

Background Information - [about 2/3 of report, fairly good summary but with a couple important factual errors. Includes information of "diagnosis" at age 18 of "suffering from autism and severe mental retardation" and that "in a diagnosis that was set up with the method of Facilitated Communication it was concluded that Benjamin's level of intelligence was normal." ]...

In the examination - He came accompanied by his father. Not at all verbal. Almost didn't have eye contact. Did not respond to initiatives [meaning of Hebrew word not clear to translator] from the examiner [phrase intentionally deleted]. For quite a number of times he touched himself in a stereotypical way. He went out a number of times independently to the bathroom but with direction from his father.

Summary: We're talking about a 37 year-old man suffering from autism. The disorder expresses itself in the one examined by:

-- An outstanding defect in social interaction which expresses itself in a marked defect in the use of nonverbal behavior (like eye contact, facial expression) for the need of making social contact

-- Lack of social contacts

-- Regression to absolute lack of language development

-- Repetitive and stereotypical body movements"

(continued on next posting)

Arthur Golden said...

(continuation of same comment)

b. My 38 year-old son Ben is clearly nonverbal, but what do you know about Ben being cognitively impaired, noncommunicative and non-responsive? What is your personal experience with "nonverbal, cognitively impaired and noncommunicative child" or "non-responsive children"? I need your answers before I can further comment intelligently on your blog entries on FC.

c. After not seeing any autism experts since leaving the U.S. in 1994, over 15 years later my son Ben needed a report about his condition in order to obtain health insurance. Providentially, I found Psychiatrist Dr. Rafael Eidelman, reported to me to be the leading professional expert on autism in Israel, who prepared in Hebrew a 2 page report, dated 6 October 2009 (the date of the 45 minute observation of Benjamin Ethan Golden) but actually received 11 October 2009. Following is the English translation prepared by my wife of the sections of this report (which cost me $1,200) that relate to the question in b. with one phrase intentionally deleted:
"[Benjamin Golden] is 37 years old, born in the US, lives in Israel, is unmarried...

Background Information - [about 2/3 of report, fairly good summary but with a couple important factual errors. Includes information of "diagnosis" at age 18 of "suffering from autism and severe mental retardation" and that "in a diagnosis that was set up with the method of Facilitated Communication it was concluded that Benjamin's level of intelligence was normal." ]...

In the examination - He came accompanied by his father. Not at all verbal. Almost didn't have eye contact. Did not respond to initiatives [meaning of Hebrew word not clear to translator] from the examiner [phrase intentionally deleted]. For quite a number of times he touched himself in a stereotypical way. He went out a number of times independently to the bathroom but with direction from his father.

Summary: We're talking about a 37 year-old man suffering from autism. The disorder expresses itself in the one examined by:

-- An outstanding defect in social interaction which expresses itself in a marked defect in the use of nonverbal behavior (like eye contact, facial expression) for the need of making social contact

-- Lack of social contacts

-- Regression to absolute lack of language development

-- Repetitive and stereotypical body movements"

(continued on next posting)

Arthur Golden said...

(continuation of same comment)

d. After you answer my questions in b. above, I will disclose and discuss the phrase intentionally
deleted.

C.5. To facilitate you in being able to answer the questions I posed in C.3. & 4., following are the 5 questions therein:

1) [C.3.c.12)] With my great appreciation to you for finding this 2010 [Mostert] article, did you actually read this 11 page article?

2) [C.3.d] I have no idea about your personal knowledge of the scientific evidence on the acceptance of FC. I do know this use of the word "all" in connection with "scientific evidence" is very common in many statements found on the internet, especially from persons identified as skeptics. Did you just rely on these numerous statements repeated so often by others or do you have personal knowledge of the scientific evidence on FC?

3) [C.3.f.] Can you tell me about how many individuals who were nonverbal autistics or with other disabilities were included in this study [Wegner 2003] both you and Mostert cite?

4) [C.4.b.] My 38 year-old son Ben is clearly nonverbal, but what do you know about Ben being cognitively impaired, noncommunicative and non-responsive?

5) [C.4.b] What is your personal experience with "nonverbal, cognitively impaired and noncommunicative child" or "non-responsive children"?

Art

Clay said...

Gee Artie, I'm wondering when you're gonna get around to answering my questions - can he walk, feed himself, dress himself, turn the pages of a book? Easy questions.

I"m learning a lot about you though, and I'm more than halfway convinced that you are indeed on the spectrum. You're really a fastidious little organizer, albeit with an ultra-conservative bent. I suspect that your entire bedroom repertoire with your wife consists of 1.a., 1.b., 1.a., 1.b. 1.a, 1.b.

In that way, you're so not like Tom Smith! ;-)

KWombles said...

Art,

Where you copied my writing, you should have enclosed it in quotes.

Wegner et al.'s 2003 study looked at the facilitators themselve and how they unwittingly guide and direct the communication.

Experiment 1 involved 64 individuals (no direct facilitation involved). The resolts showed "people were influenced by knowledf of the answers o easy yes-or-no questions even when they were responding to the instruction to answer the question randomly."

Experiment 2 involved 60 individuals and showed substantially the same results as Experiment 1.

Experiment 3 was "modeled on the standard FC situation."
They found that "action production and action projection processes are seperable and influenced by different factors."

They conclude, "The projection of the ation to the other, in turn, seems to be more a function of belief that the other is a plausible agent of the action. Belief in FC predicted projection, and reports of feeling the other's muscles move was also related to the projection."

Especially relevant is this passage: "Although the final product of FC often looks amazingly elaborate, it is nonetheless constructed through a series of facilitator decisions, many of which may be mirrored in attempts to answer questions randomly."

KWombles said...

Art,

As to the remainder of that incredible data dump (that at least in fair amount consisted of you copying and pasting my words without setting them off in quotes), I'm under no obligation to answer any, some, or all of your questions, which rather than being placed as a request read as a demand.

If I cite an article, I read it. I find it so much more helpful to have actually read the information I'm citing. I've read a fair amount of the pro-FC literature as well. Accepted scientific evidence means it's withstood the scrutiny of additional peer-review, criticism, and reproduction. Pro-FC studies overwhelmingly fail to pass the accepted test because of inadequate study designs, lack of controls, etc.

You write: "Did you just rely on these numerous statements repeated so often by others or do you have personal knowledge of the scientific evidence on FC?"

You mean did I read the scientific literature and rely on the scientific literature? What do you mean by personal knowledge of scientific evidence?

Art, you do understand how the dissemination of scientific information occurs, right? Anecdote does not ever trump the accumulated scientific evidence. That would be falling victim to the availability heuristic.

KWombles said...

"4) [C.4.b.] My 38 year-old son Ben is clearly nonverbal, but what do you know about Ben being cognitively impaired, noncommunicative and non-responsive?"

Since my post isn't about Ben, and I don't know Ben, I don't understand why you're asking me this question. I'm not telepathic.

"5) [C.4.b] What is your personal experience with "nonverbal, cognitively impaired and noncommunicative child" or "non-responsive children"?"

1. How is that relevant?
2. Why is that any of your business?
3. How would it change what the scientific evidence shows?

Tom Smith said...

As a thirty year autism treatment worker who justifiably laughed at autism "science" and researchers, I thank you Ms Wobbly for making us treatment workers work so much easier. We don't have to do anything for autistics because there's no "accepted science" that proves anything works!

OK, it's time for me to get back to being Clever Hans in teaching auties how to tie their shoes.

C'mmon folks, it's time to get real unless you're an autism charlatan.

FC is by far the most therapeutic intervention for autism EVER. Maybe that should be studied and leave the vagaries of human communication to future researchers. FC is most definitely communication by any definition.

One last thing. I'm also a nurse and we were taught that the highest ethical standards of our work was to be vigilant for and respond to "non verbal" communication of our patients. Autism treatment is covered by the same ethics. So here we have Ms Wobbly excusing us from the ethics of our work because she as a scientist says non verbal communication is nonsense!

I hope autism workers are listening. This is how your work is appreciated by the vaulted scientists these days. Find another job.

KWombles said...

Tom,

I'm the mother of three children on the spectrum.

I hope you and people like you never get anywhere near my children.

Your comment is absurd in its entirety.

KWombles said...

"So here we have Ms Wobbly excusing us from the ethics of our work because she as a scientist says non verbal communication is nonsense!"

I didn't write that nonverbal communication is nonsense. I didn't excuse individuals who work with autistic people from their ethics. In point of fact, the use of a debunked and invalid method is highly unethical. So, either you don't understand what ethics are or you don't apply them.

To borrow Art's phrasing, I'm really concerned about you, you seem to think that FC is nonverbal communication. And you've demonstrated some signicant reading comprehension difficulties here. That really worries me.

Tom Smith said...

Ms Wobbly, could you show me the scientific studies that prove non verbal communication is "valid"? If it isn't "valid" than according to you it's unethical. One doesn't get to chose one's communication form according to prejudice but one can make unscientific judgments about it. We do it all the time in caretaking.

As a mom of three auties you will get very good at it, but as a scientist you will be clueless about what it really means. You're kids will be fine but you will be running your tail off unnecessarily! Ha, ha. Then you will embrace FC because it will be the only thing to help you cut back on the enormous work your brilliant kids will make you do. Then you will be crawling to the likes of me and begging for help. I'll help but only for your kids sake...like I did for thirty years.

KWombles said...

Tom,

No, I won't be running anywhere near you or the likes of you and my children will get nowhere near the likes of you.

There's an extensive literature on nonverbal communication. It has nothing to do with facilitated communication. I don't think you know what some of these words mean.

Nonverbal communication is something we all do. Interpretation of another's nonverbal communication can be impaired, though. However, were you to be able to witness my nonverbal communication, I'm sure my intended meaning would be abundantly clear.

You're not welcome to post here, Tom. I find you to be on the likes of JB Jr, and as such you may now consider yourself to be censored. Bye now.

Arthur Golden said...

Ms. Wombles,

C.6. My current knowledge is that Facilitated Communication is not a "debunked and invalid method" as you state in a recent comment. Posting information about my current knowledge may take a while, and as I stated, I will not be able to post to your blog for 4 of the next 5-1/2 days. I do appreciate all of your replies which will allow me to proceed, making the best possible assumptions in the absence of explicit information from you where you chose to not provide me the requested information.

C.7. Please accept my apologies for my lapse in proper form in putting your words in quote, even though I thought it was obvious that I was referring to your exact words. Bli neder, I will take the time to be careful to do so in the future.

C.8. It is now 11:00 p.m. and I have been up since 4:30 a.m. (after 3 hours of sleep), so I am going to bed soon.

Art

kathleen said...

Hi Kim, perhaps you ought to start charging people for your time. Seeing as you have some folks "demanding" you answer "them"..
just a heads up...anyone who feels the need to change another persons name-because they don't like that persons views should leave. This is a blog for grown ups.

KWombles said...

Arthur,

You'll have to forgive me, but I really am not interested in wading through what you think/believe/know regarding facilitated communication, nor your opinion on the evidence.

I read the relevant literature; I detailed it in the article. Your continued defense of it here is no different than a committed anti-vaxxer continuing to insist that the 14 studies are bad and that Wakefield and the Geiers hold the key.

I'm not sure what point you believe continuing the conversation will serve.

Char Brandl said...

Finally I have found the real discussion. However, it's late and I am very tired. I hope there is some way you (Kim) can read and respond to what I have now written in two other places on your blog. (Yes, I was lost BUT I do find the discussion fascinating.)

Arthur Golden said...

Ms. Wombles,

C.9. "Biklen's FC" (Facilitated Communication) – you are wrong about the narrow definition you ascribe to "Biklen's FC" which you then conclude, based on your erroneous current knowledge, is pseudoscience.

[I will quote from your own writing first, without comment, about your current knowledge of "Biklen's FC" and then discuss my current knowledge. After 10 quotes, I decided to stop so I could begin to write my comments on these first 10 quotes]

a. In your other blog entry on FC - So if Facilitated Communication has been shown to be Pseudoscience, What's a Parent to Do with a Nonverbal Child? Friday, March 26, 2010 – you wrote in comment #6 directed to Jypsy on March 27, 2010 9:06 PM :

"Of course, we should keep in mind that people using the terminology facilitated [communication] may not be using Biklen's FC; they may be using supportive measures that don't allow for the potential of confused authorship and co-opting the terminology, which means we're using the same term but talking about different things.

If you're standing there with your hand on a shoulder, you're not typing the words for the person. If you've moved to hand over hand and immediately assume it's the individuals' words, well, you don't really know. So hand-over-hand as a teaching tool to show the individual how to operate the keyboard, how to type the words, that makes clear sense. (of course I mean the generic you, not you personally here)

As far as telling people their past experiences are invalid and all the communication not real, well, I don't know that and it's not for me to say. And I guess I feel that if I can't prove something and it's in the past, well, it doesn't really matter, you know? We take now and move forward."

b. In this blog entry (page references are to my 8 page wordfile) at page 1, you wrote:

" The idea of facilitated communication is a noble one, and as defined sounds entirely reasonable. Biklen (1991) defined FC as “Facilitated communication involves hand-over-hand or hand-on-forearm support of students as they point to pictures, letters or objects to augment communication. The facilitator does not guide the students to selections but rather stabilizes the student's movements and in some cases actually slows the person's hand as he or she points to a Choice” (p. 163)."

c. In this blog entry at page 2, you wrote:

" The Institute appears to take into account the overwhelming consensus of scientific evidence that points to the lack of efficacy and legitimacy of facilitated communication (see Mostert, 2001 for a literature review pointing to the lack of scientific evidence regarding FC)... [read your blog entry until the paragraph that ends with:] While the guidelines above have the ring of sincerity, the overall lack of scientific evidence and the unwillingness to admit the problems makes the institute at best pseudoscientific."

d. In this blog entry at page 2, you then wrote:

" Van Acker (2006) writes in Outlook on Special Education Practice rather negatively about FC:
“Simply put, facilitated communication is a method of augmentative or alternative communication that involves supporting or "facilitating" the arm or hand of a communicatively impaired person while he or she types out a message on a computer keyboard or other device. FC is predicated on the mistaken assumption that many individuals with severe communicative disorders (e.g., those with autism or severe and profound mental retardation) have a level of "undisclosed literacy" that can be "tapped" through this procedure.” (page 10)"

(continued on next posting)

Arthur Golden said...

(continuation of same comment)

e. . In this blog entry at page 2, you then wrote:

“The American Psychological Association (1994) adopted a resolution regarding FC in which the APA concluded that it "...is a controversial and unproved communication procedure with no scientifically demonstrated support for its efficacy" (p. 1). Nevertheless, FC continues to gamer support of some in the educational community (Gerlach, 1993) and to stimulate other practices that incorporate aspects of FC.” (page 10)

f. In this blog entry at page 3, you wrote:

"...although it appears that Biklen may have gotten overzealous in his assumptions that individuals who had received no exposure or formal education (or informal) could somehow be hyperlexic and that FC was the way to expose this."

g. In this blog entry at pages 3-4, you wrote:

" The AAP (1998) provided the following statements regarding FC in the journal Pediatrics:
[page 4]...This manual prompting..."

h. In this blog entry at pages 4-5, you wrote:

"The AAP's recommendation:
[page 5] AIT and FC...Many families incur substantial expense pursuing these treatments, and spend time and resources that could be used more productively on behavioral and educational interventions."

i. In this blog entry at page 5, you wrote:

"The Institute is connected to the School of Education of Syracuse University (where Doug Biklen, proponent of FC serves as dean to said department), and perhaps this is an explanation for the lack of scientific evidence. It certainly points to a weakness in the training of our educators. Having taken education courses both at the undergraduate and graduate levels, I can at least personally attest that it is often not an evidence-based practice, but instead one based on philosophical grounds (see here for an example)."

j. In this blog entry at page 5, you then wrote:

" Lest readers think that criticism is restricted to the scientific field, even the legal field has weighed in on the lack of credibility for facilitated communication: Gorman(1999) writes “FC is criticized because it lacks empirical support,5 frequently results in accusations of abuse,6 and often raises false hope.7 Despite criticism, Biklen continues to promote FC, and many continue to practice the technique” (p. 518)."

k. The beginning of your statement quoted in a. "Of course, we should keep in mind that people using the terminology facilitated [communication] may not be using Biklen's FC" is accurate. For example, my son Ben's type of FC is not the same as "Biklen's FC." There are "best practices" in place for Biklen's FC since the early 1990s that are intended to prevent the possibility of telepathy. Because Ben does not follow these best practices (and it was Ben's own choice), Professor Biklen has stated since the 1990s that what my son is doing is not FC. While I disagree, my comments here are to defend Biklen's FC, which is how you are using the term Facilitated Communication in this blog entry. Then in the same sentence you continue " they may be using supportive measures that don't allow for the potential of confused authorship and co-opting the terminology, which means we're using the same term but talking about different things." My current knowledge, based on actual involvement, is that Biklen's FC with the best practices put in place since the early 1990s does involve "using supportive measures that don't allow for the potential of confused authorship and co-opting the terminology." You have erroneous current knowledge about Biklen's FC.

(continued on next posting)

Arthur Golden said...

(continuation of same comment)

l. In your next paragraph in this quote a., you refer to "hand-over-hand." Even Biklen in 1991 in the quote in b. used the term "hand-over hand." Biklen, not a trained behaviorist, probably meant the term in its generic sense, not in the specialized sense of a behaviorist doing ABA. However, Biklen was wrong then and you are wrong now to use the term "hand-over-hand" (even though it is often a proven teaching methodology). No type of Facilitated Communication (Biklen's, Ben's or others) involves the use of "hand-over-hand" as used by a behaviorist. Biklen does correctly state in the very next sentence that FC does not mean to guide, which is the essence of hand-over-hand. Neither does it involve the use of "prompting" as erroneously stated by the AAP in 1998, in the quote in g. To my great frustration, there is no good description I have at my fingertips of what FC does involve.

m. You end your statement quoted in a. with " I feel that if I can't prove something and it's in the past, well, it doesn't really matter, you know? We take now and move forward." Concerning statements made by Biklen in 1991, he has retracted those statements you are now objecting to as if they are still his current position. Your current knowledge is not up-to-date but my current knowledge about Biklen's FC is more up-to-date, so I am glad to offer you my information and look forward to you revising you conclusions accordingly. Other examples are included in these 10 quotes.

n. Referring to c. (b. was already commented on in l.), I will have to write a separate comment just on Mostert. But his 2001 article only included scientific evidence up to 1999 and I plan to show you that the cumulative situation in 2010 has changed for the best, and was not as extreme Mostert concludes in 2001. In reply to your last sentence in c., it is my current knowledge that the guidelines now in place are actually sincere, there has been a willingness to admit possible problems since the early 1990s and therefore you are erroneous in your current knowledge in calling Biklen's FC "pseudoscientific" for these reasons.

o. Even though in your quote at d. Van Acker wrote in 2006, his statement about Biklen's FC being based on "undisclosed literacy" is from statements from the early 1990s since retracted by Biklen. In f. you write about Biklen believing such individuals are "hyperlexic" as if it is his current belief while again it was from statements in the early 1990s since retracted.

p. In e. you are quoting the APA in 1994 about FC which has been made much more scientific since then, as I plan to show when writing about Mostert. I believe, but I will have to check, that this resolution was not of the APA as a whole, but merely the one section for behaviorists, then led by Dr. Gina Green, a very zealous opponent of FC then and to this day. Please note that f. has been commented on at o. and g. at l.

q. While AIT used to cost over $1,000 for 10 hourly treatments over 2 weeks, it is usually done only once. Concerning the quote of the AAP at h. - "AIT and FC...Many families incur substantial expense pursuing these treatments, and spend time and resources that could be used more productively on behavioral and educational interventions." – relative to ABA which costs up to $60,000 a year and is pursued for 2, 3 or more years, my current knowledge is that FC has never been expensive to implement, and except for relatively modest training costs, utilizes staff otherwise needed for persons with high support needs. FC takes so little extra time and can be done in conjunction with existing behavioral and educational interventions that this claim is just not based on any reality.

(continued on next posting)

Arthur Golden said...

(continuation of same comment)

r. Your statement quoted in i. is pure conjecture and is not based on the reality of my actual knowledge of the FCI for nearly 20 years. While you use the term "personally attest" and I am sorry that you received such a poor quality education where there was such a low quality of science, what does your personal experience elsewhere have to do with Syracuse University? My direct knowledge of Syracuse University, going back to the Dean over 20 years ago, the great humanist Burton Blatt (of "Christmas in Purgatory" fame at the Willowbrook Institute), is that it is an institution of the highest quality. Its level of science is of the highest quality.

s. I have extensive knowledge about abuse accusations through FC and the statement you quote in j. about " frequently results in accusations of abuse" has no basis in reality. The rate of false accusations of abuse, including sexual abuse, with the use of FC is not higher than without FC. Some of the charges were clearly shown to be true and some of most vulnerable people were properly protected. Here you are not quoting any objective scientific evidence so I do not understand why it is included in this blog entry.

t. Within hours, I will not post public comments to my computer for 1-1/2 days and then after access for 1/2 day, I will not post for another 2-1/2 days until next Wednesday morning my time. So please be patient until I can access my computer and post the additional comments I am currently thinking about, including on your other FC post. Thank you for this opportunity to express my ideas in response to your ideas. This exercise has greatly helped me with a real life problem that arose weeks before I ever heard of your blog. I will wait to see your reaction to this four part comment before I prepare any more similar material. I pray you will give it serious consideration for the sake of seeking the truth to be of practical help for the needs of many autistics and others without adequate expressive language.

Art

kathleen said...

You see, this really doesn't have much to do with science in a way. If you look at F.C...it is kind of faith based.."I BELIEVE that I am fascillitating the persons words." In a sense that is true-but in another sense, they have to be questioning themselves. They WANT to believe it is the other persons words..because if it isn't-what does that make them? When you get into this sort of "discussion"..it is more a moral issue-a faith issue. Questioning faith..well you can't. Science can't. A science of faith piece would be interesting..

Arthur Golden said...

Ms. Wombles,

C.10. Since I will very soon not be accessing my computer to send posts to public sites for about 1-1/2 days, I have decided to repeat section t. of my 4 part comment posted over 5 hours ago:

t. Within [one hour], I will not post public comments to my computer for 1-1/2 days and then after access for 1/2 day, I will not post for another 2-1/2 days until next Wednesday morning my time. So please be patient until I can access my computer and post the additional comments I am currently thinking about, including on your other FC post. Thank you for this opportunity to express my ideas in response to your ideas. This exercise has greatly helped me with a real life problem that arose weeks before I ever heard of your blog. I will wait to see your reaction to this four part comment before I prepare any more similar material. I pray you will give it serious consideration for the sake of seeking the truth to be of practical help for the needs of many autistics and others without adequate expressive language.

Art

KWombles said...

@Char,

:-) It (the conversation) got scattered all over the place! Chaos tends to reign supreme here.

I responded to your post on the other thread here on the blogspot blog, so I hope you'll see that.

KWombles said...

@Art,

Please look at the main blog, on the right, read through to the bottom of that first box.

I have three children on the spectrum, a teaching career, and am taking classes, as well. I write several blogs, engage in many conversations and dialogues, have a garden, and many other things that do not always allow for prompt responses, and when they feel like demands that I respond, it is off-putting to say the least.

You're welcome and free, as long as you're civil, to post your concerns here, but do not expect that I will drop my life to wade through everything you post, nor that your strong emotions regarding FC are going to make me decide that the literature is incorrect because YOU know what YOU know.

I am open to evidence, not anecdote. And there are other ways to make sure that the authorship is the individual's and not the facilitators. A refusal to look towards technology that makes sure the communication is from the individual sends up smoke signals at the very least.

KWombles said...

Just noticed LizDitz's recent post on FC, can be found here at http://lizditz.typepad.com/i_speak_of_dreams/2010/04/combating-pseudoscience-in-autism-treatment-facilitated-communication-.html.

Of special interest is the download of the Spring 2010 SCIENCE IN AUTISM TREATMENT newsletter, with an interview with Dr. James Todd. I encourage everyone to read the interview.

Also of interest is the Association for Science in Autism Treatment's position on FC:

"Facilitated Communication is not a useful intervention for individuals with autism spectrum disorders."

http://www.asatonline.org/intervention/treatments/facilitated.htm

Arthur Golden said...

Ms. Wombles,

C.11. In your comment #47 posted April 2, 2010 9:46 AM your wrote:

"Please look at the main blog, on the right, read through to the bottom of that first box."

As you so politely requested, starting with "Please," I did so and since the content of this box often changes, for the record following is what I read, without any reply from me in this comment (but see my next comment – which I am trying to write in the next 5 hours, but if not it will have to wait for nearly 3 days from now until after the Pesach Holy Days are over throughout the world).

"Evidence-Based Blogging

Content at Countering is science/evidence based and may not walk hand in hand with your faith/belief in your therapy or treatment modality of choice or model of autism. I'll respect your right to your faith (even though I think going on faith and conviction is a poor substitute for getting at objective reality). You're welcome to post it here, of course, but don't expect to convert me to your particular faith (heh, and that goes for religious faith, too, although that's not what I mean here).

If one is rational and evidence-based, one goes where the science leads, whether one likes it or not. If one is evidence-based, then one remains open to new evidence, new findings.

I also reserve the right to get my snark on when there is just no other way to deal with a topic.

In addition, if you choose to post long, long, never-ending comments, one after the other (Arthur), you're going to have to accept that I may not read the entire thing, nor answer it."

Arthur Golden said...

Ms. Wombles,

C.12. In between getting ready for the last Holy Day of Pesach, let me at least start to reply to your comment #47 posted April 2, 2010 9:46 AM (and although I did not comment on all of it, I have decided the following is enough and I will now get back to dealing with the substantive issues in almost 3 days from now):

a. I am very sorry that you feel that my posts are demands that you respond. It was not my conscious intention to make you feel that way and I thought I was careful to not do so. I realize it is difficult for any person to evaluate their own actions, so I appreciate your feedback. Your feelings are legitimate and so I accept responsibility for making you feel that way. I ask you to forgive me. Now that you brought your feelings to my attention, I will try to be more careful in the future. Let me assure that I do not intend to put you under any pressure to respond to my posts, just as I am not able to respond so promptly to comments directed at me. So long as you do not close comments to this blog entry, I hope that when you or I or anyone else is ready, that person will have the opportunity to respond or not respond as that persons chooses.

b. I believe there continues to be major misunderstandings between you and me. I am the eternal optimist, and as I wrote 3-1/2 days ago, one half week ago, at the end of my last comment to blog entry B. (refer to my special notice for link): I am still optimistic that the misunderstandings between us can be largely cleared up in this forthcoming discussion about FC. In your comment and the box on the right, you make a number of statements that may imply certain things about me. So let me try to clearly make the following statements.

c. I understand that Countering is evidence-based blogging and when I am discussing "Biklen's FC" in this blog entry I am only intending on going on evidence. I realize that I have a strong mindset about FC which does affect how I understand information I read about FC. I understand that having a strong mindset on some subjects is a common human characteristic and I believe you have a strong mindset about FC too. That is why I never rely solely on my own opinion and I seek out the opinion of others, especially if their position is different from my own. Even though I do have a strong faith, it is actually part of the Chareidi culture to seek out scientific evidence in making practical decisions, the best example being the latest medical science on health issue, including following standard medical practice for childhood vaccinations, as my wife and I did for our own 3 children and our other 2 children do for our total so far of 10 grandchildren, the oldest being 13 years old.

d. I very strongly agree with your statement and look forward to us pursuing it in this blog entry that:

" If one is rational and evidence-based, one goes where the science leads, whether one likes it or not. If one is evidence-based, then one remains open to new evidence, new findings."

e. Your last sentence in the box is:

" In addition, if you choose to post long, long, never-ending comments, one after the other (Arthur), you're going to have to accept that I may not read the entire thing, nor answer it."

Rather than give you a subjective reply, let me precisely quantify using objective criteria. Your original blog entry has been placed by me on a wordfile, and comes out to 8 pages plus 1 page of references. Due to the limitations of blogger, my comment section C.9. did have to be split into 4 comments - #40, 41, 42 & 43. On my wordfile, it comes out to 3-1/2 pages. It should be noted that almost all of #40 and #41 are 10 quotes from your blog entry on which I wanted to comment (stopping 2/3s of the way through your blog entry because I realized it was getting long). Therefore only about half of the total comment, or about 2 pages, were my actual comments on your specific quotes on what I believe is the core issue, what is Biklen's FC.

Art

Arthur Golden said...

Char Brandl is not the only one having difficulty posting a comment to this blog – In this case, I am forwarding this email from my friend Richard.

Art,

I have tried to add this comment on to the site but for some reason had difficulty. Richard

KWombles stated "I think that facilitated communication is a dead end, but supported communication with safeguards to ensure authorship is not. On the FC post, I commented to David that FC isn't necessary; if a person is unable to type unassisted, there is technology that can track eye gaze and select the word/icon on the computer screen."

You are failing to take into consideration the difficulty that some people have with visual difficulties. I have Scotopic Sensitivity/Mearles Irlen and have been wearing tinted lenses for seventeen years but I would still have difficulty with track/eye gaze. Although tinted lenses alleviate the difficulties of
glare patterning and depth perception, headaches, visual stress they do not cure it. Many people on the spectrum suffer from SSS. I have typed with both fc and independently. I typed independently at the age of sixteen after having been denied an equal education. Although I had a vast vocabulary my speech was going no where. I was able to speak the occasionally sentence here and there. But my speech never came together. I was typing one day and took hold of my mother's finger - to steady my hand - as I have also ataxic cerebral palsy and I am also stated to have the disability label of 'classical autism'. I can type completely independently or I can opt for someone holding the sleeve of my jumper just to steady my hand. This support would be very light - hardly noticeable in fact but for someone who is challenged physically is sufficient. I have been typing for eighteen years and yes now I am confident, out spoken, and my language is on par with my peers. I have spent so many hours typing that my communication is now part of who I am. At the age of sixteen I had never experienced holding a conversation, voicing an opinion, expressing myself. I still feel the pain of that child that never was able to socialise or enjoy the company of other children because of speech difficulties. I feel the pain of every child in that situation. So every child has the right to experience communication and self expression and no one has the right to deny them that experience. I was written off at the age of two as 'retarded'. I was denied speech therapy on grounds of disability. I was denied an equal education on grounds of disability. At the age of nineteen I enrolled in mainstream education on an Advanced Level Course (in the UK). Only 20% of people are stated to study at this level. My College Lecturer stated that I was the brightest student he had ever taught and I was given awards for my outstanding ability and commitment.

So no facilitated communication is not a dead end - it is a means to an end. It is 'hope' for all the children with 'disability labels' that are shut inside themselves with no way to communicate. If a child has no means of communication then they will not develop to their full potential.

I live communication. For those of you who take it for granted and have never been unable to communicate do not deny the opportunity to communicate to another human being.

Richard

Contributing author to "Autism and the Myth of the Person Alone" [edited by Dr. Biklen].

Arthur Golden said...

Arthur, If you want to post this for me on "Countering Age of Autism", that is fine, I do not want another email acct. My post is below:
Thanks,
Betty

I am going to jump in here, as a parent of a 14yr old son, that began communicating in handwriting, on a white board. My son has asd, pretty severe global dyspraxia, plus a dx of PANDAS. He does have limited speech, mostly single words and short phrases. Writing skills have always been difficult, becoming increasing illegible over the years....although using a white board, he can write much easier. He does type, but with poor visual scanning skills (d/t motor planning) it is also very time consuming. Within the last couple years he started writing to me and a couple other people, sharing things we had no prior knowledge of. Telling me things that happened at school which I had to confirm....and were always true. I do not do hand over hand, I may touch his shoulder, or, if sitting next to him, will use the back of my arm against his arm. Why is this? I don't have the answer, but I'm guessing it has to do with confidence and self esteem. Why would we believe less in these individuals than we would in a stroke victim, or someone with an acquired head injury? It has opened up a door for my son, where I believe we can see a future. His spirits have soared and he is so much happier. It is also called FC, because for some reason, he still needs our touch. I have spoken to several brain researchers, no one is doubting this....but all of them have admitted that we still know very little about what is truly happening within the brain. I really don't care if this is questioned by anyone else; like any parent that sits where we do, it has more to do with giving our child a voice in his/her life, but most all it's about believing in them as a real person.
Betty Dunning

KWombles said...

Arthur, friends of yours who have had difficulty commenting here should click publish your comment again if it doesn't go through the first time. Again, it should be noted that just as I am unlikely to be swayed by a story of vaccine-induced autism, I am not likely to be swayed by an anecdotal story regarding FC. If I were swayed by anecdote, I'd be constantly spinning, wouldn't I, as everyone has a compelling story? Science provides our best way to finding whether something is genuine, something really works.

As a partial response, it isn't relevant how long my blog posts are. They're my posts and it's my blog. You're under no obligation to read it. Just because you have, it places me under no obligation to read your comments and respond to each and every point.

Might I suggest that if you have the tremendous need to respond in detail on a subject so dear to your heart that you've created a yahoo group for it that allows you to do that. In addition, you're unlikely to find folks who aren't already in agreement with you.

You mistake anecdote and discourse for scientific evidence. I assure you, it is not. The clear preponderance of studies which provided controls and good designs to clearly establish authorship showed that the authorship came from the facilitator, not the individual.

Where there is no question of authorship co-option, I have no problem.

I fail to see the point in discussing this with you further.

Arthur Golden said...

Ms. Wombles,

C.12. If you had bothered to read my latest comments (not the 2 comments I posted for friends), you would have noticed that I am providing actual evidence. Thanks to your link to the ASAT interview with Professor James Todd about Facilitated Communication, it is more appropriate for me to pursue asking Professor Todd instead of you, which I intend to do. I do wish to express my great appreciation to you for provoking my thoughts on this subject of FC. As I intended to do and as you suggested, I am in the process of posting my comments here to my Yahoo!Group, which can be accessed by going to:

http://health.groups.yahoo.com/group/autismfc/message/1977

Arthur Golden of Jerusalem Israel

James said...

Kim:

Thank you for your thoughtful overview of the facilitated communication literature. It is indeed an amazing story, considering the continued use, sale, promotion, and defense of what is probably the most thoroughly discredited interventions in the entire developmental disabilities literature. What is more incredible, as Mark Mostert points out in his recent article, is the continued publication of articles on FC in academic journals which take its effectiveness for granted. Apparently, all that is required to "validate" the specific instances of FC written about in certain journals, Intellectual and Developmental Disabilities comes immediately to mind, is a brief mention that FC is "controversial." Some of the editors and editorial boards that are supposed to be protecting the integrity of our science simply do not care anymore -- if they ever did. And what they don't care about is the well being of people with developmental disabilities.

Rapid prompting (RP) was mentioned somewhere near the beginning of these comments. You are right that there is no scientific literature about it. After all the years that RP has been around, I cannot believe that this is not on purpose. A close examination of RP would not be helpful for the promoters of RP. The RP method, which involves the gradual fading of prompts as the number of response choices is increased, could not be better designed to establish unconscious cueing of letter selections. The child becomes increasingly sensitive to the cues given by the teacher while the teacher comes to give them increasingly subtly and automatically. Thus, RP is FC without the hand-holding stage. Magicians have known about and used this very technique for hundreds of years. Veteran performers are eventually able to exchange subtle signals with their confederates without thinking about them. In science, we use the term "Clever Hans Effect" to describe the same thing happening accidentally. Its lesson is so obvious and important that it is simply immoral not to apply it to any teaching system or intervention that is likely to replicate it. Yet, in examining RP, we see nothing in the procedures to either prevent or test for unconscious cuing, and much to encourage it. The irony of RP is that Soma Mukhopadhyay, its creator, was trained in chemistry, but seems to have forgotten importance of applying the kind of methodology and controls that would be standard in chemical analysis to her work with children. Or, perhaps, ensuring that children with disabilities receive demonstrably effective interventions is not as important as ensuring that a swimming pool has the proper amount of chlorine.

Thank you again for shining a light on this issue. Your efforts to promote sound scientific thinking and ethical practices are very much appreciated. More important is the practical outcome. Getting such information out will help bring real benefits to real people--people who might otherwise be subjected to and harmed by all manner of superstition and pseudoscience.

Jim

KWombles said...

@James,

Thank you for the kind comments and for providing more information concerning RP. I did a wider database search, but still came up with nothing beyond van Acker's (2006) mention of it, and with only the website promoting it to go on for information, I wasn't sure how to cover it in any greater detail.

I know that, personally, where there is a dearth of any scientific examination but an abundance of testimonials and money to made off of seminars, I am going to come down on the side of it being far more likely to be pseudoscience and an attempt to take advantage of the desperate than a legitimate endeavor.

I have no doubt that those who use RP believe in it fervently, but that doesn't make it legitimate. Of course, it's unlikely that any amount of scientific evidence would convince them otherwise, if the anti-vaccine parents and FC advocates are any indication.

Hopefully, RP will undergo scrutiny, but since it's been around since 2002 and has yet to, as long as people are willing to spend the $725 for the training or to pay Soma to work with their kids, the non-profit has no incentive to open themselves to that scrutiny, and there are enough hoops involved in doing the training that no one who wasn't already convinced would put themselves through those hoops.

I'll be looking into the non-profit itself and its tax forms in the next couple days and hopefully get a cautionary post up about HALO.

I really appreciate you providing your analysis regarding the method. :-) The more information that can be provided to parents so that they go forearmed and forewarned, the better.

James said...

Kim:

There is actually a very tiny "stealth" literature on Rapid Prompting consisting, it seems, of one study:

http://psych.wisc.edu/lang/pdf/gernsbacher_case_study.pdf

Morton Gernsbacher's "Language is More Than Speech," from the Journal of Developmental and Learning Disorders, is about the application of a kind of hybrid of facilitated communication and rapid prompting to a five-year-old child. The article is essentially a detailed anecdote, the product of a remarkable familiarity of Gernbacher with her subjects. As a result of the Mukhopadhyay-inspired intervention, Gernsbacher claims that the child went from being essentially non-verbal at age 5 to testing at the verbal level of a 22-year-old man just a year later:

"When RH was 6;4, he was tested on the Peabody Picture Vocabulary Test…a commonly used verbal IQ test. RH would have been untestable with the standard requirement to point to the correct picture, because he still did not have a reliable proximal (or distal) point at that age; however, the picture plates were scanned into a computer, and RH was allowed to use his large, child-sized trackball to scroll to the correct answer. RH achieved a raw score of 181, which translated to a standardized score of 160, at the 99.9th percentile, with an age equivalence of 22 years. (p. 90)"

This is an amazing, amazing, amazing development. So amazing that a real scientist, familiar with all the many ways the answer selections might have been controlled by the observers, would have been deeply concerned about bias in the testing. Even the Vatican looks more deeply into lesser miracles. But in good FC/RP fashion, Gernsbacher said nothing about the lack of protections against or tests for facilitator control. This is all the more troubling given this statement on page 92:

"RH began with physical support at the wrist while seated in a person’s lap (for further proprioceptive input and support). The wrist support was faded to support at the elbow, and the lap support was faded to sitting beside the person providing support. The elbow support was then faded to a light touch on the shoulder, and then physical support was faded completely."

It seems to me that when a researcher finds herself typing out something that sounds like it has been dictated to her by Douglas Biklen, it behooves her to more critically examine what she is saying generally. Of course, we know that Gernsbacher has been a strong advocate of FC, serving as a keynote speaker to the FC advocacy group AUTCOM, and having given her apparently unqualified endorsement to the Savarese FC book Reasonable People -- among other things. These are not the kind of behaviors that are likely to co-exist with doing careful scientific analyses of communications in children.

Jim

Alexander Cheezem said...

Kim,

Skimming through the comments, I suggest looking up the ideomotor reflex. It's highly relevant to this.

Clever Hans, by contrast... not so much.

-- Alex

Arthur Golden said...

To: Alexander Cheezem

C.13. Your comment about Facilitated Communication as Ideomotor Effect instead of Clever Hans -
My response in my role as a publicly known human rights advocate:

a. At least James (who is readily identifiable as Professor James Todd from the information in his 2 comments) is placing FC users at the level of a nonhuman animal - Clever Hans - while a horse, was a very intelligent horse who if he could not do arithmetic could pick up very subtle unconscious cues from his human owner.

b. Ideomotor Effect (as written about by Herman Spitzer) places the FC user at the level of an inanimate object - a piece of wood used as a planchette with a Ouija Board, which obviously has no intelligence whatsoever.

c. Although I have expressed (C.9.l.) that Ms. Kim Wobles is incorrect to describe FC as ever being "hand-over-hand," at least that term is describing the FC user in human terms. At the time I expressed myself, I did not have a good description at my fingertips of what FC really is, but I recently received, in direct response for my request for such information, a 7 page published article by Dr. Rosemary Crossley from 1991 which clearly does describe FC and which I will forward as a pdf file upon request to my email at golden.arthur@gmail.com . Professor James Todd, when he used the phrase in his recent interview "with the child‘s hand being clearly pushed around by facilitators" might be thought to implying the Ideomotor Effect, but I think it is more reasonable to imply the use of "hand-over-hand."

d. On this blog entry, my own son Ben (Benjamin Ethan Golden) may be the only named FC user, or at least the most prominently named FC user (C.4.b.&c. etc). Char Brandl did name other FC users, but on the other blog entry on FC (D.), without any details. Alex, concerning FC as Ideomotor Effect, you are welcome to try to join James Todd in designing "honest, methodologically sound scientific tests" of FC that I agreed to participate in as a response to the public offer last week of James Todd. Further information is available publicly at:

http://health.groups.yahoo.com/group/autismfc/message/1991

e. In closing, Alex, knowing you genuinely care about all human beings, I suggest you carefully consider the moral implications to other human beings such as my son Ben (unfortunately, Rom Houben may be a different situation) when you publicly state that FC is Ideomotor Effect (actually you used the term Ideomotor Reflex).

Arthur Golden

Alexander Cheezem said...

Mr. Golden,

I suggest -- very strongly -- that you take a look at the history of facilitated communication before bandying about accusations like that.

Specifically, I suggest taking a long, close look at the cases of Matthew Gherardi, Betsy Wheaton, and Rom Houben (although you did mention him). I am also aware of some even more damning examples, due to my interactions with JREF, but can't remember certain details well enough to provide what you'd need to guide a Google search.

Arthur Golden said...

Alex,

C.14. My reply to your comments
(over 4,096 characters, so I have to post as 2 comments)

a. First of all, I greatly appreciate that you did not ignore my comment entitled "about Facilitated Communication as Ideomotor Effect instead of Clever Hans." Of course, I will keep the contents strictly confidential, but I wish to note that in addition to your second comment on this blog, you then quickly responded to my 2 private emails asking you for more information. After I post this public comment, I would suggest that you and I take this discussion offline if you wish to continue. However, I will not send you any further emails about this specific subject unless you explicitly consent to do so.

b. My most relevant statements in my previous public comment were

(C.13.b.) "Ideomotor Effect (as written about by Herman Spitzer) places the FC user at the level of an inanimate object - a piece of wood used as a planchette with a Ouija Board, which obviously has no intelligence whatsoever." and

(C.13.e.) "In closing, Alex, knowing you genuinely care about all human beings, I suggest you carefully consider the moral implications to other human beings such as my son Ben (unfortunately, Rom Houben may be a different situation) when you publicly state that FC is Ideomotor Effect (actually you used the term Ideomotor Reflex)."

You wrote back starting with "I suggest -- very strongly -- that you take a look at the history of facilitated communication before bandying about accusations like that."

I presume "accusations like that" refers to my two statements quoted above in this section C.14.b. My first statement quoted above was intended as a statement of fact and not intended as either an explicit accusation nor implicit accusation. I am sorry to read that you interpreted that way. You did not directly reply if you disagree with my statement of fact. If you do disagree, please explictly inform me how you think I am wrong in describing the definition of Ideomotor Effect.

My second statement is my opinion (but not intended as an accusation) based on my prior knowledge of you where I was given the impression, which has not changed, that "you genuinely care about all human beings" meaning that you are highly sensitive to others. My point is that the use of the term "Ideomotor Effect" does not meet your own high standards and you should reconsider expressing your opinion about facilitated communication (FC) in such terms. At least in regard to the vast majority of FC users who are not like Rom Houben, who unfortunately, physically might be considered by some to be at the level of an inanimate object, although I would never consider any human being in such terms. (continued on next comment)

Arthur Golden said...

(continuation of previous comment) C.14.c. I realize that you admit to only "skimming through the comments" but if you read them carefully, you should have noted that I had already looked at the history of FC. Personally, I would never make such a suggestion unless I knew that the person had not done so. I would have first asked the question, "have you looked at the history of FC?" I realize that this is a matter of form, but here I think the form is important. It should also be noted, as I disclosed in my comments on this blog, not only have I looked into the history of FC, I have been an active participant in the history of FC since September 1990 (albeit at a low level).

d. Then you write "Specifically, I suggest taking a long, close look at the cases of Matthew Gherardi, Betsy Wheaton, and Rom Houben (although you did mention him)." I would not have brought up Rom Houben, a case of this just this past few months, unless I had already taken a long, close look. Matthew Gherardi and Betsy Wheaton are very tragic cases of sexual abuse allegations through FC from the early 1990s for which the primary news source, and only source I can find on the internet at this time, is the Frontline television show "Prisoners of Silence" first aired October 19, 1993. Although I saw this television show when first aired, and I am quite familiar with this aspect of FC, I had forgotten these two names. On this aspect of FC, I already wrote on this blog, writing directly to Ms. Kim Wombles:

(C.9.s.) "I have extensive knowledge about abuse accusations through FC and the statement you quote in j. about " frequently results in accusations of abuse" has no basis in reality. The rate of false accusations of abuse, including sexual abuse, with the use of FC is not higher than without FC. Some of the charges were clearly shown to be true and some of most vulnerable people were properly protected...."

In other places, I have written about "Prisoners of Silence" and I may write more about it on my Yahoo!Group autismfc. However, I primarily commented about your use of the term Ideomotor Effect, and bringing up these more general comments are irrelevant to that specific issue, even though it may not be obvious to the uninformed reader. You then write about being "aware of some even more damning examples" which may seem to have something to do with Ideomotor Effect, but based on my understanding of your statement in a subsequent private email, which I should not quote without your explicit permission, these examples have nothing to do with the specific topic of Ideomotor Effect.

e. I would be very interested in your direct response to my concerns about the moral implications of the use of the term Ideomotor Effect in connection with human beings such as my son Ben. I am not demanding that you so respond and you may choose to not do so. However, given your professional role with autistics, I hope you do give this matter serious consideration and do directly respond here or by private email as you choose.

Arthur Golden

KWombles said...

James,

Thanks for sharing the paper by Gernsbacher.

Alex,

I will do that.

Arthur,

I hope you are having a pleasant weekend.

Alexander Cheezem said...

Mr. Golden,

In actuality, the e-mails I sent you gave you more than enough to reach the same conclusion I did. Moreover, I would like to point out that I am not oblivious to blatant insinuations (e.g. your previous message).

The question is not a matter of the intelligence or capacity of the autistic individuals who were "treated" with facilitated communication or of their humanity, but rather the level of their participation in the act of supposed communication.

Or, in other words, your entire previous message was highly fallacious.

As for the example I mentioned to you in an e-mail... yes, it does. I was citing a case wherein the autistic individual was blatantly aware of what was going on but not participating in the act. Simply put, the facilitator was typing with his hand. There was no possibility of Clever Hans-ing -- ergo a different explanatory mechanism is needed.

Of course, I only gave you enough informatio to realise that last bit. I try not to repeat stories I hear from others without good reason.

Arthur Golden said...

To Mr. Alexander Cheezem

C. 15. My reply to your latest comment #64 of April 12, 2010 1:07 AM:

a. You seem to know what you are referring to in your comment, but most of the time I do not have the foggiest idea what you are referring to.

b. You start out with "In actuality, the e-mails I sent you gave you more than enough to reach the same conclusion I did." More than enough what? The emails contain no details whatsoever that I can find, except for a reference to one television show for which I cannot find out any details. Please repeat these details you are referring to here because I cannot discuss a private email in a public blog.

c. I have no idea what blatant insinuations you are referring to. If it is in my emails, you have permission to report my emails here on this public blog.

d. You then refer in your comment to "the level of their participation in the act of supposed communication." From that I do not understand how that makes my "entire previous message .. highly fallacious."

e. You then write in your comment:

"As for the example I mentioned to you in an e-mail... yes, it does. I was citing a case wherein the autistic individual was blatantly aware of what was going on but not participating in the act. Simply put, the facilitator was typing with his hand. There was no possibility of Clever Hans-ing -- ergo a different explanatory mechanism is needed."

I do not know which example you are referring to. Could you provide a name or some details?

Where do you get the information that "the facilitator was typing with his hand?" I do not see such information any place.

f. If the "facilitator" is typing with an autistic's hand, then it is not facilitated communication (FC). I have already discussed this issue in great detail within this blog entry. If you believe it is FC, then we are not talking about the same thing. Since I do not doubt your sincerity but I now question your most basic understanding of what FC is, please provide me your peer-reviewed articles to support your position and in the absence of such references, any other specific sources for such a position that FC means typing with an autistic's hand. I have never met a facilitator properly trained in the use of FC who would even think about typing with an autistic's hand. It may be possible for a person to do such a thing with some autistics, but it is not FC. Also, I am sure that many autistics would never allow anyone to do that to them, and that definitely includes my own son

g. When you end with:

"Of course, I only gave you enough information to realise that last bit. I try not to repeat stories I hear from others without good reason."

I have no idea what information you are referring to! I did not receive any story from you at all.

Maybe you think you sent me information that I never received. Therefore at least one hour after I post this comment I am sending you back in one email copies of your own two emails so you can see exactly what I received. If I overlooked something, please let me know. Your comment has me completely mystified!

Arthur Golden