Interverbal: Reviews of Autism Statements and Research
A critical look at science in the autism world
Friday, November 30, 2007
Facilitated Communication: A Further Comment
A short time ago wrote a post reviewing the research on Facilitated Communication (FC). I found a fair amount of research that did not support this method and a limited number of studies that did. One of the studies I referenced was Weiss, Wagner, Bauman, (1996). This study involved a single participant; a 13 year boy diagnosed with autism and severe mental retardation. The authors concluded the the young man’s communication was genuine.
I listed this study as a support for FC after having read the authors abstract. It is usually a dangerous policy to offer a review on an article having only read an abstract. I did so in this case, because I had already read many of the articles I cited in my review. And because I simply couldn’t imagine that the Weiss et al. article would be so methodologically poor as to cause me to not even inlcude it in a review.
I received a tip in the comments section of my previous post that several of the supporting research articles for FC, had significant problems. Some especially damaging points about Weiss et al. were brought. After a online link to the article was found, I took the time to review the article in depth.
I was rather horrified by what I read. Weiss et al. isn’t just a study with a few small problems, it is a study whose problem negate any worth this study may have had. I will detail these problems below. I am withdrawing my inclusion of this article in my research that supports FC section. It doesn’t merit it.
The most glaring flaw in Weiss et al. is that the participant was asked many of the same questions about the same story before the test condition. The researchers called this practice phase “consolidation”. It involved an experimenter who knew the correct answers to the questions “facilitating” for the participant prior to the test condition with the “naive” facilitator.
Here is an example in trial 1:
Consolidation question “What game did they play?”
Test question “What game did they play in the story”
I have honestly never seen contamination this bad in peer reviewed research.
There are other flaws in this research as well. Please go to the comments of my previous post and see for yourself.
I am going to make the claim that one of the universally agreed upon concepts in special education (or regular education for that matter) is scaffolding. Scaffolding is the idea that a learner begins in a situation of high prompts and high control and as s/he demonstrates mastery the prompts and controls are removed. One doesn’t usually hear of critiques of scaffolding. Yet, despite its popularity, fading the scaffold can be difficult.
There are multiple reasons it may be tough to fade a prompt back. Probably the biggest reason is habit. If we help a student practice writing their name with hand- over- hand guidance everyday then this might be difficult to be as vigilant as we should. This is especially true if we are in a hurry. And good scaffolding is very progressive. We would have to periodically try to offer gentler support to see what the student can do. And this is not just for the whole name, but even for small parts, maybe just for the curve in a lowercase “d”. I think it is easy to imagine a little support becoming a hindrance.
There are several ways around this. Probably the biggest way is to be diligent about testing fading back the assistance. A better way would be to set some sort of criteria for fading back. However this is also a lot of work. To do this means one has to do some sort of data collection on a daily basis. This is however, a systematic way to approach the problem. This is also the way I like to approach the issue. And remember this isn’t just true for handwriting.
For Hub Members, please read this before continuing with the current article.
Looking at Facilitated Communication
Facilitated Communication (FC) is used for individuals who have difficulty using vocal speech. It has been used for people with Cerebral Palsy, Down’s Syndrome, other health impairments, and autism. The premise is that FC is appropriate for people whom have specific motor issues, but are still able to make use of their arms, hands, and fingers. The individual is then paired with a trained facilitator. This person provides physical and/or other support that allows the person to communicate using a keyboard or pad.
FC had its origins in the 1977 in Australia. Rosemary Crossley, a teacher in a hospital used facilitated communication to elicit communication from 12 students with Cerebral Palsy. Later on this idea (Rosemary’s baby if you will) traveled to the United States and elsewhere.
Douglas Biklen, now the Dean of the College of Education at Syracuse University helped to popularize this idea in the US. He created the Facilitated Communication Institute at Syracuse. The center provided training, consultation, and advocacy for FC. It even produced t-shirts with the slogan "Not being able to speak is not the same as having nothing to say".
Controversies
The major concern in FC is that the individual being facilitated is not really doing the communicating. It has been argued that FC is just/usually an artifact of the facilitator’s communication. It can be argued that the same ideomotor phenomena we see with Ouija boards and dowsing rods is also in play here.
Another point is the abuse scandals surrounding FC. Skepdic claims that facilitators are taught that 13% of their clients have been abused. In my opinion a surprising number of facilitators have accused parents of abusing the client. Also unsurprisingly, most of these cases turn out to be garbage. And PBS Frontline episode from 1993 chronicles one such case proven to be false. However, the author of FC Wikipedia page reassures us that “numerous abuse allegations made via FC have been found to be valid” and then cites a paper with 4 cases with some degree of evidence out of 13 cases that were reviewed.
The Research
Much of the research in FC is qualitative as opposed to quantitative. This means that the research doesn’t attempt to answer whether FC is legitimate, but instead looks to how it affects the quality of life for the user or their family members. Some of the FC supporters also have the habit of forgoing peer review and publishing research in books as opposed to academic journals as seems to be the case for Biklen & Cardinal (1997).
In the quantitative realm, in general, as methodology shows increased control results tend to worsen. Biklen et al. (1995) argue that negative results tend to be associated with higher control, and that positive results tend to originate in naturalistic settings.
An example of positive results found in naturalistic setting would be Simon, Toll, & Whitehair (1994) which involved 7 students were reported prior to the study to be communicating via facilitation at levels far above what was previously thought possible given their level of intellectual ability. The authors found that 1 child out of the 7 could answer correctly on 2 of the trials.
Montee, Miltenberger, & Wittrock (1995) assessed FC for 7 adults in naturalistic conditions. Again, only 1 of the 7 subjects had any correct answers in the unknown or false conditions. The evidence suggested that facilitator control was active in the other conditions. Also, Vasquez (1995) involved a naturalistic setting. Among the 3 autistic children who participated in the study, no valid results were found in the facilitator blinded conditions.
There have been some other positive results such as Cardinal, Hanson, & Wakeham, (1996). The authors used 48 student and 3,800 trials. They randomly selected a word, presented to the student; the student had to type with the aid of their naïve facilitator. Other positive results can be found as well in the literature. Calculator and Singer (1992) have a letter to the editor of Topics in Language Disorders.
The negative results for FC include (Beck & Pirovano, 1996; Eberlin, McConnachie, Ibel, & Volpe, 1993; Regal, Rooney, & Wandas, 1994) as well as the largely negative studies already mentioned (Montee, Miltenberger, & Wittrock, 1995; Simon, Toll, & Whitehair, 1994). In addition, the large study, Howlin (1997) looked at 45 trials of FC involving over 350 participants. The data validated communication by 6% of the participants. The authors showed that over 90% of the cases were influenced by the facilitator. A large review by Mostert (2001) also showed mostly negative results.
Discussion of the Data
The data support the idea that FC may lead to authentic communication in a minority of cases. The data also support the assertion that the majority cases where FC is said to produce communication beyond what was previouly thought, are not authentic. Likewise the data support the criticism that facilitator influence is an active phenomena in the majority of cases in FC.
The data do not support the criticism of the negative findings offered by Biklen et al. that more naturalistic settings tend to produce better results. In fact the available data contradict this (Montee, Miltenberger, & Wittrock, 1995; Vasquez, 1995). No data are available to assess the claim that better results are obtained when the researchers attempt to reassure the participant. There is some data to validate the idea that FC users will improve if given time to practice the testing protocol (Cardinal, Hanson, & Wakeham, 1996). However, this repeated presentation may act over time as a sort of teaching process in and of itself. A group design where individuals are randomly sorted in a short and long testing group, has yet to be done, but is feasible. Such a design could help answer the question.
Champions and Critics
FC has has no lack of famous advocates and detractors. Critics of FC have included Carl Sagan, in “The Demon Haunted World: Science in Candle in the Dark”. The famous skeptic James Randy is a signatory of the anti- FC, BAAM petition. Also, numerous articles critical of FC have appeared in the two skeptical flagship magazines “Skeptic” and the “Skeptical Inquirer”.
On the other side we find Morton Ann Gernsbacher, the past president of the deeply scientific American Psychological Society, and is a sometime publisher in no less a prestigious journal than “Science”. Another noted advocate would be the late Arthur Leonard Schawlow the winner of the 1981 Nobel Prize for his work with laser spectroscopy. He and his wife felt the technique was helpful with their autistic son in the 1980s. I think it would be important to note some of the people who were users of FC have gone on to become adovcates of FC themselves.
Several groups have become advocates of FC. These include TASH and AutCom. Other groups such as The American Psychological Association, The American Association on Mental Retardation, the American Academy of Child & Adolescent Psychiatry, The American Speech-Language-Hearing Association, and the Behavior Analysis Association of Michigan, have offered positon statements agaisnt FC.
Review of the Defence of Facilitated Communication
Here I will look specifically at the claims offered by FC advocates. I will be blunt and say that I think this is weakest area of FC. Below, specific advocates are named and their comments will be scoured for merit.
Dr. Schawlow wrote
“However, most of these studies have given negative results because of serious flaws in their methods, resulting from a failure to understand what was being tested. In fact, all that these studies have shown is that it is possible to interfere with the process of facilitated communication.”
Dr. Schawlow proposes that in a more relaxed setting, positive results will be gained. This is directly in conflict with the data. Moreover, Dr. Schawlow asserts that the negative research proves it is possible to interefere with FC. Here he is assuming that positive results would have been found, had the protocal been different. This is assuming what he should be proving, or the fallacy of begging the question.
Dr. Schawlow wrote
“Clearly, there is an enormous amount of evidence that, under proper conditions, facilitated communication really does work.”
One might ask where is this enormous amount of evidence? Is it peer reviewed? This is where citations can should be given, they are absent in this case. Dr. Schawlow then rebukes the skeptics by asserting
“It is scandalous that some people are using the unscientific "validation" experiments as an excuse to describe facilitated communication as fraudulent.”
And yet Dr. Schawlow has only ad hoc hyptheses to demonstrate why the controls were actually “fraudulent”. The data that could back his assertions are either absent or actually not in his favor.
Dr. Gernsbacher is the mother of a young man diagnosed with autism. She is a valued and important ally of autistic self-advocates. I will unashamedly profess my respect for her and her work. Her good example has been a model for me as a student. Her article debunking several baloney proofs of an autism epidemic, is an exercise in lucid thought. But she also has offered one opinion on FC that I think is fallacious.
She is reported to have answered a question concerning criticism of FC, by claiming the critics didn’t want to acknowledge the language capability of autistic persons. If this report is an accurate description, then Dr. Gernsbacher employed the psychogenic fallacy. She dismissed the criticism and shifts the focus onto the critics. Those who report this story as a “proof” to challenge criticisms of FC engage in the fallacious appeal to authority.
Finally we come to Biklen
Biklen writes
“Despite the controversy over facilitation, thousands of teachers, parents, and researchers continue to use the method nationally and internationally. We might ask why. What do practitioners point to as evidence that convinces them that the words typed are those of the people with disabilities, not of the facilitators?”
Biklen seems to have crossed the border into both a pragmatic fallacy (it look like it works) and an argumentum ad populum.
Biklen in one chapter, quotes a young man who proved in a non pulished replication of an earlier study that his communication is authentic. After proving the authenticity of his writing the young man was inspired to write the following:
“Today I retook the test, and I passed it, Mayer says brilliantly. But I feel sad. Sad for people who can't do it and are silenced. Sad for those who will run from the depressing truth that I was right and they were wrong. Sad that I will be fighting this fight for years to come. And sad that this was even necessary. Friends will celebrate, but then the work must continue.”
If this communication was not authentic, then a fascinating insight into the FC facilitators world view is revealed. But if so, I would argue that the young man severely misses the point of such testing. What does such an attitude tell us about the FC culture, if anything?
Conclusion
The data support the comment that FC may lead to authentic communication for some individuals with autism. The research suggests that these are the minority of cases. The research suggests that facilitator influence is an active factor in FC.
Caution is advised towards FC. I do not advocate the total dismissal of it. However, until safety guidelines are employed, there is reason to doubt the authenticity of communication by those who use it unless there other forms of communication also in use by the individual and at comparable levels.
References
Cardinal, D, N., Hanson, D, & Wakeham, J. (1996). Investigation of authorship in facilitated communication. Journal of Autism and Developmental Disorders. Mental Retardation. 34(4), 231-42.
Calculator, S.N. & Singer, K.M. (1992). Preliminary Validation of facilitated communication. Topics in Language Disorders (Letter to the editor), 12(6), 9-16.
Biklen, D. & Cardinal, D. N. (1997). Contested Words, Contested Science: Unraveling the Facilitated Communication Controversy. Teachers College Press, New York.
Biklen, D., with Richard Attfield, Larry Bissonnette, Lucy Blackman, Jamie Burke, Alberto Frugone, Tito Rajarshi Mukhopadhyay and Sue Rubin. Autism and the Myth of the Person Alone. New York University Press, (2005)
Beck, A.R. & Pirovano, C.M. 1996. “Facilitated Communicators’ Performance on a Task of Receptive Language.” Journal of Autism and Developmental Disorders, 26 (5), 497–512.
Eberlin, M., McConnachie, G., Ibel, S., & Volpe, L. 1993. “Facilitated Communication: A Failure to Replicate the Phenomenon.” Journal of Autism and Developmental Disorders, 23 (3), 507–530.
Howlin, P. Autism: preparing for adulthood. London: Routledge, 1997. pp. 5-6.
Montee, B, B., Miltenberger R, G., & Wittrock D. (1995). An experimental analysis of facilitated communication. Journal of Applied Behavior Analysis. 28, 189-200.
Mostert M.P. Facilitated communication since 1995: a review of published studies. Journal of Autism and Developmental Disorders, 2001, 31(3), pp. 287-313.
Regal, R.A., Rooney, J.R., & Wandas, T. 1994. “Facilitated Communication: An Experimental Approach.” Journal of Autism and Developmental Disorders, 24 (3), 345–355.
Simon, E, W., Toll, D, M., & Whitehair, P, M. (1994). A naturalistic approach to the validation of facilitated communication. Journal of Autism and Developmental Disorders. 24(5), 647-657.
Vazquez, C, A. (1995). Failure to confirm the word-retrieval problem hypothesis in facilitated communication. Journal of Autism and Developmental Disorders. 25(6), 597-610.
Facilitated Communication: And how it affects the Hub
Before I begin this series I would like to first have a Look at the Hub. For the unaware the Autism Hub is an aggregation of bloggs by autistic person, parents of autistic persons, and professionals. The Hub offers diverse views, but focuses on advocacy, rights, acceptance of autistic persons, and a positive outlook towards autism.
Facilitated Communication is one of those divisive issues lurking under the surface at Autism Hub. The issue tends to pit the strong science/skeptic types in the Hub against the self-advocates and those well known for being their allies. Of course it is not really that simple. Some of the self-advocates are also notable skeptics and/or scientists.
I think this is one more reminder that we members of Autism Hub are not lockstep.... we are not monolithic. It is inevitable that we will disagree strongly on some autism issues. I think it is also important to recognize that this is okay, this is healthy. It would be far more troubling to me, if we had only had some absolute stance on the subject; some sort of dogmatic approach that forbade dissent and critical commentary.
It would be sad if a divisive issue (FC is really just one example) caused to forget all our points of agreement…. of shared advocacy. However, it would be just as bad, if we suppressed our criticisms, if for the sake of unity, we engaged in groupthink. I have written before why it is so important to express criticism for both ethical and logical reasons.
I suppose I ought to plainly state that I fall into the traditional skeptic camp on this issue. I will warn the viewer that in the second part of this series I am going to be very critical of certain aspects of Facilitated Communication. I hope that even the advocates of this idea are able to take something productive from my criticism and do not merely find that reading it is an exercise in frustration.
That said, comments and rebuttals are always welcome.
On of the occupational hazards on blogging on science issues, is that some people will disagree, and not just disagree but they will frame the disagreement with some teeth. Bloggers of science issues, tend to deal with this in various ways. Some of us take mom’s advice and “don’t argue with an angry person”. Some people make fun of the dissenters. Some people offer one liners and snappy rebuttals. Others try to sincerely answer the points.
It’s tough to know what the right response is. In the autism realm the issues often concern deeply personal issues like the health of one’s children. Emotions are inevitably going to run a bit high in such circumstances.
I am really not sure I know the best response in such cases. However, it is my choice to attempt to deal with such disagreements by trying to tackle the issue in a serious and calm manner. To do this I have to take the criticisms seriously. I have to acknowledge that perhaps the criticisms contains merit even if couched in ad hominems. I then can scour the criticism for merit and see if any is actually contained.
With this in mind let’s take a look at some feedback I received on another autism blog that contains a different view towards science and evidence. My responses are in gray.
“Such a one trick pony with one line of thinking. Its like all you ND types just can't get past the small stuff. The California incidence rates are going up and to you that means Kirby is wrong and Jenny is wrong and there is no autism epidemic and.. you win somehow [snip].
Well I admit I do tend to worry about the details. It is in the details that we find the difference between physics and metaphysics, between science and pseudo-science, and certainly between good math and bad math. And math is the very basis of epidemiology. No math, no scientific epidemiology.
Kirby did claim the autism CDDS data should be/are dropping in response to the removal of thimerosal. So did the Geiers and several other advocates of the thimerosal etiology of autism theory. If this is what they have claimed I think it would be reasonable to put the claim to the test. In fact I am going to insist upon it. Of course none of this proves that there is no autism epidemic. What this proves is that one of the tests offered by several well known advocates isn’t going in their favor.
“The longer the bullshit stays in people's minds (and the internet is where most people used to get info on autism), the more time that insurance companies can stall on calling autism a medical condition and not a pre-existing genetic condition, like down's syndrome.”
This is called the argument from adverse consequences. The fact that some people disagree about causes or cures, has no ability to make criticisms of these untrue, just because such dissent might slow down insurance companies handing over money. In addition it needs to first be proved what the causes and cures are, via valid science. If you don’t have this, then you are engaging in circular reasoning.
“Just looking at your blog, anyone can see how narrow your thinking is. Here is gow you interpret that data. The autism rates in California are going up and mental retardation rates are also. There is an epidemic of autism and it is environmental (a likely culprit is mercury since it is sill in vaccines given to pregnant women and to babies at birth and is in the air, and pesticides - don't you already know this?). If you cannot see that then your are stupid or evil [snip].”
For use to recognize an epidemic we need to first know the rates of autism before and after an event or period of time. The high prevalence of a disability does not an epidemic make. In this case we would have to measure the same thing in the same way in the same area. Incidentally this has been done on a small scale. Chakrabarti & Fombonne (2005) measured autism in the same way in Staffordshire England in the early and late 90s. They found the same prevalence rate.
Are you proposing that thimerosal which has been removed and was formerly found in several pediatric vaccines, is now not only being equaled in terms of the autism it causes, but actually exceeded, via a single prenatal vaccine? That claim is possible, but seems quite extraordinary.
As to the air, ice cores show that mercury air levels where the highest in the years following the eruption of Mount St. Helens where tons of the mercury laden mineral, cinnabar were vaporized. So, why didn’t we see a spike in 1980-1981? It should have been there if air mercury levels are a statistically notable influence.
And where else might the mercury be hiding… computer screens, lights, cinnabar… crematoriums, Chinese forest fires? After a while it become a shell game; is it here, is it there, keep your eye on the mercury. I think before science can give you the answer you seek, we would first need to know exactly what we should look for. We need to have a firmly defined independent variable. That’s what the advocates of the thimerosal etiology of autism need to agree on and then research. In the absence of this, we are playing a shell game. I think recognition of this is the difference between keeping an open mind, and not keeping so open a mind that the rain can slip in.
“There are stories on ABC on Biomed for f@$%’s sake now, a company that is practically swimming in Pharma money. Can't you see it is over for your little team. Why argue with ---- ----? He is the least of your worries. Better clean up you blogs and remove the insults to parents helping their kids and the denial of an autism epidemic or you will be erasing hate mail 24 hours a day from the flood of new autism parents [snip].” [edited for language and anonymity]
Yes, there was a biomed advocate on Oprah. This talk show host has also had psychics and assorted non scientific practitioners of alternate medicine on her show. That’s because Oprah interviews people who interest herself, or her audience. Time on Oprah, is simply that. It is no proof of the scientific validity of a theory. Also at roughly the same time Jenny was on Oprah, a major correlational study, Thompsen et al. (2007) came out. The authors showed no association between thimerosal dosage and adverse cognitive effects.
Why is it do you think, that the advocates spend more time talking about a fellow advocate on a talk show than the what a large study indicates? What are values are reflected here do you think”
As to my blog, I don’t believe I have any insults that I have written to anyone, parent or otherwise. If you find an insult that I have written on this blog, please notify me and I will apologize and then remove it promptly.
As the theory of the autism epidemic, you first need to prove there is one, something neither yourself nor anyone has done yet. If you would like to offer irrefutable proof or even a minor proof, you are welcome to post it.
I have never yet received hate mail or even hate comments at Interverbal. I tend to advocate polite even if heated conversation. As an alternative to hate mail you may wish to try that instead. I suppose that if I really did receive hate mail I would consider it as more of a statement about the author, then about myself.
A lot of educational activities are in fact a chain or sequence of behaviors. Taking off your coat, typing a word, writing you name, all consist of a series of small finite behaviors. For young students, some of these chains can be quite hard. Finishing a puzzle or learning one's phone number comes to mind.
In backwards chaining we first learn to do the very last step, then the second to last, then the third to last, etc.
If I were to use this technique to teach a child to write her name, then I myself would write all the letters in the childs name except the last one. "Susie" would then have to write the final "e" on her name. As she progressed she would learn to add the final "ie" to "Sus", etc.
Matson, J, L., Wilkins, J., Boisjoli, J, A., Smith, K, R. (2007). The validity of the autism spectrum disorders-diagnosis for intellectually disabled adults (ASD-DA). Research in Developmental Disabilities. [Epublished ahead of print].
50% of the adults in this study were diagnosed with an PDD (Autistic Disorder or PDD-NOS). The article does not make it clear whether these were rediagnoses or not.
Abstract
"Psychologists interviewed direct-care staff using a battery of assessment measures including the autism spectrum disorders-diagnosis for intellectually disabled adults (ASD-DA), the Diagnostic Assessment for the Severely Handicapped-II (DASH-II), the Matson Evaluation of Social Skills for Individuals with Severe Retardation (MESSIER), the Socialization domain of the Vineland Adaptive Behavior Scales (VABS), and a checklist containing criteria for autism and PDD-NOS from the DSM-IV-TR and ICD-10. Three hundred and seven intellectually disabled (ID) adolescents and adults ranging in age from 16 to 88 were assessed. Participants were diagnosed with either ID and ASD (autism or PDD-NOS; n=156) or ID and no Axis I diagnosis (n=151). A modification of the multitrait-multimethod approach was used to establish the convergent and discriminant validity of the ASD-DA. The scale proved to have robust convergent validity when correlated with the DSM-IV-TR/ICD-10 checklist, MESSIER, and Socialization domain of the VABS. Additionally, discriminant validity was demonstrated by comparing the ASD-DA to items from the DASH-II (measure of general psychopathology). The implications of these data are discussed."
One of the techniques that I have come to embrace in what I call tinkering. Tinkering is taking a formalized lesson plan that gets used the same way day after day and systematically changing various aspects of it.
The advantage of tinkering is that we sometimes land on alteration that immediately improves the number of correct answers, or improves the level of student's attending, or the rate of their reponses. Another advantage is that it can help promote generalization by altering the stimuli used in the lesson.
For example, I used to teach a calender group. The old lesson plan had me labeling months or the days of the week. I tinkered with this plan by mislabeling different dates at random. The students thought it was pretty funny. It increased their amount of attending. It also gave them a way to practice being assertive while being polite.
There are a few caveats to tinkering. The first being that it very often doesn't produce anything helpful. The second is that in a formalized lesson plan where data are collected, tinkering should be done at the end, when all data have been collected. This is because altering the format may invalidate the data. New tutors or teachers are often avid tinkers. However, it has been my experience that they usually require guidance as to when to tinker and when to stick to formalized lesson plan.
There seems to be be some misinformation floating around the blogs of late. I would like to take a minute and try to correct some of this.
Myth #1: B.F. Skinner advocated punishment.
At no time in his carear was Skinner an advocate of punishment. This is directly said both in his early and later books.
Myth #2: Radical Behaviorists believe in using punishment.
That's funny because I am a radical behaviorist and I don't believe in using punishment. Skinner was the first radical behaviorist and he didn't believe in using punishment. Radical behaviorists are not "radical" because we are really, really behavior analytic, or because we condone punishment. We are radical because we seperated from earlier forms of behaviorism, namely in that we consider thoughts and feelings to be objects worthy of formal study.
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