3/26/2010

So if Facilitated Communication has been shown to be Pseudoscience, What's a Parent to Do with a Nonverbal Child?

Repost from March 26, 2010.


I recently wrote a research-based blog on facilitated communication. It was a rather long article, I'll admit, but I thought it important to provide as much information about facilitated communication and what the overwhelming majority of studies and meta-analyses showed regarding it. It has, despite its popularity in some sectors of the autism community and its fervent supporters, been shown that the communication comes not from the individual who is nonverbal but from the facilitator instead.


What is a parent and what are educators to do? We want to help nonverbal individuals find a way to express themselves, to communicate their needs, wants, and desires.


There are other modalities that do not have the potentiality of being co-opted subconsciously by the facilitator.


According to Schlosser and Wendt (2008):


"Approximately 25%–61% of learners with autism present with little or no functional speech (Weitz, Dexter, & Moore, 1997) and may be candidates for augmentative and alternative communication (AAC) approaches to replace or supplement natural speech and or handwriting (Lloyd, Fuller, & Arvidson, 1997). Unaided AAC approaches include gestures, manual signing, and finger spelling. Aided AAC approaches include selection-based methods, such as graphic symbols, nonelectronic communication boards,speech-generating devices with synthesized and/or digitized speech output, and exchange-based approaches, such as the Picture Exchange Communication System (e.g., Mirenda, 2003)."


Perhaps some of the confusion in the wider community with what is meant by facilitated communication is the use of facilitation in the context of augmentative and alternative communication:




"It is understood that the primary aim of AAC intervention is to facilitate a child’s communicative competence through the use of multiple communication modalities that are by their very nature supplementing (“augmentative”) or replacing (“alternative”) natural speech (Light, Beukelman, & Reichle, 2003)" (Schlosser and Wendt, 2008).


Son et al. (2005) note that there are many available choices for AAC interventions and that there may be benefit in the nonverbal individual having a role in the decision of which intervention device to use, while noting the difficulty in determining which AAC will be the most effective for the individual.


There are problems, as others more illustrious than myself have noted, with autism treatments not being well vetted in the scientific literature before being implemented. FC is an example of this, but it is only one of many.


I understand the need, the desire, the impetus to do something, anything, to help children with autism improve their functional skills. I understand parents, educators, support personnel, and physicians employing a kitchen sink approach, while I might not agree with that approach.


We need to work better at coordinating researchers' efforts with the actual clinicians, practitioners, educators, and parents so that what is done boots on the ground is looked at in well-designed studies that can evaluate the effectiveness of the approaches being taken.


Even some widely used systems like PECS have not received sufficient research to validate them: "Results of this study reveal that the PECS is widely implemented with individuals having ASDs but without a strong empirical base" (Ostryn et al., 2008).


Does this mean we stop cold? No, it means that while we work to help our children, we look to what current research has to say and where there is clear empirical evidence that treatment modalities are not effective or cause greater harm, we steer clear of them. Where the research has not been done, but no harm has been substantiated, we proceed cautiously, and we advocate for getting that research done. We make sure that the treatments are plausible, as well. If it's too good to be true, well, come on, folks, it is. We educate ourselves about the scientific method, about critical thinking, about the body and how it works, about the brain and how it works. We read the scientific literature and we examine everything with skepticism.  We also proceed knowing the fallibility of our perceptions, our incredible ability to see what we wish to see, and to attribute causes inaccurately. As long as we proceed open-minded and willing to be proven wrong, we safeguard against falling into the woo and losing our way and in the process harming our children.


References


Ostryn, C., Wolfe, P., & Rusch, F. (2008). A Review and Analysis of the Picture Exchange Communication System (PECS) for Individuals With Autism Spectrum Disorders Using a Paradigm of Communication Competence. Research & Practice for Persons with Severe Disabilities33(1/2), 13-24. Retrieved from Academic Search Complete database.

Son, S., Sigafoos, J., O'Reilly, M., & Lancioni, G. (2006). Comparing two types of augmentative and alternative communication systems for children with autism. Pediatric Rehabilitation9(4), 389-395. doi:10.1080/13638490500519984.


Schlosser, R., & Wendt, O. (2008). Effects of Augmentative and Alternative Communication Intervention on Speech Production in Children With Autism: A Systematic Review American Journal of Speech-Language Pathology, 17 (3), 212-230 DOI: 10.1044/1058-0360(2008/021)

23 comments:

Clay said...

It sounds like that's the completion of a well-researched project. I know there's at least one person who would dispute it, and if he came back, I promise to seriously discuss it with him.

In previous discussions elsewhere, he stated that his son's fingers were sensitive, that it would hurt him to type. From my experiences in manual labor, I know that hands can toughen up. Shaking hands with a carpenter is like shaking hands with a 2 by 4. Shaking hands with a bricklayer is like shaking hands with a brick. I suggested this to him, but if he answered, I don't recall.

I'd like to ask him a few things:

1. Can Ben walk, or is he confined to a wheelchair?
2. Is he able to feed and dress himself?
3. Can he turn the pages of a book?

I really have no idea of the physical ability of his son, and the answers to these questions might explain a lot. It should go without saying that there is no blame on him, or his son, if he's unable to do these.

jypsy said...

"It was a rather long article,"

Wasn't it though?! ;) And, I have no issues with your conclusion:
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.

But, I'll throw in a few comments....

First, FC is not a "treatment" or a "therapy" any more than sign language or PECS is. It's probably better described as a "method".

"We want to help nonverbal individuals find a way to express themselves, to communicate their needs, wants, and desires.'

Exactly, and exactly where I was coming from when I offered Alex a variety of means of communication, including supported communicating.

"I understand the need, the desire, the impetus to do something, anything, to help children with autism improve their functional skills. I understand parents, educators, support personnel, and physicians employing a kitchen sink approach, while I might not agree with that approach. "

I was not however in a state of "need, the desire, the impetus to do something, anything" though it could be said our approach to alternative communication was a kitchen sink approach. Alex was offered sign, picture and picture/word boards, a yes/no card as well as his own natural gestures and his own invented signs. Speech was always encouraged though he did not begin to talk until after his 6th birthday.

Alex's first encounter with a keyboard was when we were loaned an electronic typewriter when he was 3. Here's some long ago writing about it --
He always had some level of independent typing. At first the alphabet and the numbers 1-20. He typed a lot of gibberish by himself but all of a sudden he started typing "pumpedi" all over the place. It took me a while, and many pumpedis later, to realize what he was typing was "Pumped!", the name of a kids sports show on the sports channel that he really enjoyed. Not being able to find the "!" he used "i". (http://tv.nytimes.com/show/159126/Pumped-/overview)
That's the kind of literacy skills he demonstrated at 3. At 4 he demonstrates more literacy skills while playing at snack time (something I was told at the time only perhaps 1 or 2 of his typical classmates could have done.): http://www.youtube.com/watch?v=cA1OvYM44A8
In school, he did his math & spelling independently with a pencil. Supported typing helped to speed up his typing, much like my cane assists my walking. It freed up his brain to think about what he wanted to say and say it while dealing with all the other distractions coming at him. I can walk without my cane but I have to put much more thought into the act of walking and that takes mental energy away from thinking, talking, and dealing with distractions.
When he started to speak, at 6+, he could read aloud anything you put in front of him.
(continued)

jypsy said...

From where I sit, this wasn't a "too good to be true" scenario. Thinking back on your earlier '7 point definition', Alex was not taught to read or type before he independently typed "Pumpedi" but he had obviously read the word off the tv and had obviously typed it on the electronic typewriter. Alex looked at the keyboard about 99% of the time. His spelling has always been very good (and his spelling tests were always done mostly independently with a pencil. There is at least one YouTube video of him doing a spelling test) though his sentence structure and punctuation vary, even today, day to day, and very much resemble the way he talks (see his blog posts of his races)

I still have those same question for those who totally write off FC or supported typing -
"And if an FC user/supported typist starts typing independently, is everything they typed before that "real" or not?"

And to everyone -
"And how would you define "independent typing"?"

Alex typed 100% without physical contact in Grade 4 - was that independent typing?
I have to be in the room (even with my back turned and totally focused on something else) in order for him to be able to do his homework until about Grade 8? Did independent typing start in Grade 8?

There are lots of videos on our Youtube channel of Alex typing & writing, many in class & some at home (search "homework" to see how much he enjoyed homework!) We offered Alex communication methods for his benefit and use. School required that he use these skills to do his schoolwork and that is the only time I ever "forced" him to communicate. His schooling and education would have been completely different, on so many levels, had he not been supported in his typing in the very early grades.

KWombles said...

Jypsy,

Doesn't sound like it was a too-good-to-be-true situation for you nor that it was facilitated communication, either. Assisted, supported, but not facilitated. :-)

Using a variety of tools and communication methods and therapies regarding speech makes sense. The study on PECS that I cited recommended that PECS be part of a multimodal approach.

Some parents are desperate, are willing to go down any road no matter how likely, but using a variety of supportive tools to help a child communicate is not, I think, what I'm talking about here.

I think that facilitated communication is still being operationalized differently between groups. There is a huge difference between what occurred in these studies and what Biklen is providing training in and what it sounds like you did with your son. It doesn't sound like there's any doubt that your son had multiple ways to communicate and for you to assess that it was his communication.

Sigh. I think there's no good answer to your question "And if an FC user/supported typist starts typing independently, is everything they typed before that "real" or not?"

If authorship wasn't ascertained at the time of the facilitation, then there is absolutely no way to verify it after the fact.

And taking a position that follows the scientific evidence is in no way tantamount to declaring people liars about their experiences (I know you didn't say that, but it feels like that's where you're going with this, and I apologize if I read into this what wasn't there-- I may have spent too much time reading parents who are certain the vaccines did it).

I don't speak to the objective reality of people's personal experiences because I can't (and neither can they, not the objective reality). I can only look to what the scientific method has shown us about how we remember things, how malleable memory is, how our perception is distorted by confirmation bias, affect heuristic and availability heuristic, and recognize that we are all doing the very best we can to get through each day, to make the best lives we can. :-)

jypsy said...

"Doesn't sound like it was a too-good-to-be-true situation for you nor that it was facilitated communication, either. Assisted, supported, but not facilitated. :-)"

The same conclusion I have reached.

"I apologize if I read into this what wasn't there-- I may have spent too much time reading parents who are certain the vaccines did it)."

Apology accepted, yes, you've read too many anti-vax parents. :)

These are honest questions I've had for a dozen years or more (and likely put forth here and here and even here. No, they are not scientific questions but I do find them interesting. For instance, Stephanie Lynn Keil recently wrote "I don’t believe that facilitated communication works for the majority of people using it. I still think it should be pursued because we may uncover that Lucy Blackman or Jamie Burke that we thought wasn’t there but I believe that FC is only valid if the person is typing completely independently and it has been verified through rigorous science that the person is indeed the one typing. Otherwise, I consider this practice highly unethical."

So, to paraphrase, FC should be pursued because of people like Lucy (who Alex was always very much like). But Lucy's typing was only valid when she learned to type independently. So, everything before that was invalid and, since she's never been "verified through rigorous science" her past experience is also highly unethical. But of course, without that "highly unethical" totally invalid communication she engaged in for so many years he now "valid" communication would likely not have been possible.

I have always wondered if the people who hold these views believe that Monday's communication was totally invalid if independent typing started on Tuesday. And, it follows, that influence can happen from being in the room, not just physical contact, so the definition of independent typing is not as cut and dry as it may seem.

Mostly this is just my own curiosity. It is a non issue in our lives at this point. But it is something I do have experience with and have a number of videos illustrating those experiences. As I've stated (so many times) before - I will only ever vouch for the validity of Alex's supported communication. FC can so obviously be abused and facilitator influence, whether conscious or unconscious, is a real possibility. I never liked the way it was promoted, I don't like the way it is defended. But I do believe there are supported typists who may never type independently and how very sad for them that their communication will never be considered "valid" by so many. I am all for scientific study of FC and would have subjected Alex's supported communication to validity testing, if I'd had the opportunity, before he typed fully independently.

KWombles said...

Jypsy,

I figured it was possible that I was reading more into it than you were placing there, but I thought I should cover that potentiality in case; I've had so many anti-vax parents insist that if you don't take their story as the gospel truth, you're calling them liars (when it isn't a matter of taking their stories at all).

I try to reserve judgment, and I try not to speak to individual's personal stories very often (since it's such a subjective thing, unless you can verify things in writing that is contemporaneous and show how a story has been altered over time, I think it's better to let people tell their stories and respect their right to do so without challenge).

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.

And pursuing augmentative and alternative forms of communication is an important and necessary tool for helping nonverbal individuals communicate independently (even if it isn't speech).

If you know the science shows a method to be invalid, you either fix the issues with the method or you scrap it. It seems to me it would be incredibly unethical and cruel besides to say, well, we know this doesn't work, we know that we can substantiate these findings, and every time we test the situation we find it's the facilitator, not the individual, but hey let's keep doing this, because some of these folks will type independently at some point. Umm, no. Let's use forms that have empirical validity and help them with an array of tools so that in the meantime until the person can independently communicate, we aren't putting words in his mouth.

The eye gaze technology solves the problem, avoids the authorship issues. Supporting the individual, redirecting and prompting, providing an array of tools and methods isn't the same as facilitated.

Of course, we should keep in mind that people using the terminology facilitated 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.

Does that make sense? -)

Clay said...

Totally off-topic, but as this blog is a refuge from censorship, and has been used for the purpose before, I'll reproduce a comment that won't be allowed on Jon's blog.

http://autismgadfly.blogspot.com/2010/03/senate-delaying-neeman-confirmation.html

Jonathan said:

"In a recent New York Times article we see that the United States Senate may be showing some good common sense and may be delaying a vote on confirming Ari Ne'eman's appointment to the National Disabilities Council due to his controversial neurodiversity views. A hold has been placed on Mr. Ne’eman’s nomination, which requires Senate confirmation."

See how I added the proper capitalization there, Jon? Why is it you don't do that, and give respect to the Senate and the Times? We see that you know how to use HTML to indicate italics and bold; they're useful tools, and aid the reader in understanding the nuances the writer intends.

How can we interpret your failure to capitalize proper names and places? Is is because you're just stupid, or because you're autistic, or because you typically do everything in a half-assed way? Take your pick, let us know.

"This is interesting in light of the fact that we can judge Ne'eman by the company he keeps, such as ASAN members in good standing Harry Williams and Clay Adams who have spent extensive time bullying me on the internet, yet Ne'eman has never censured these individuals in any way let alone expelling them from ASAN internet lists and other ASAN activities."

I'll give ya credit, you got everything correctly capitalized, but I did have to add a comma after 'internet'.

Now do you honestly think you can stand there and throw rocks, and then say no one can throw rocks at you, because you're autistic? FYI, as far as I know, my stance with you is the only thing that Ari has disagreed with me about. As I recall, he was of the opinion that I was giving you more attention than you deserved, and was allowing you to claim that you were a "victim", as is your wont.

I actually agreed with his first point, but believe that everyone can see the illogicality of your claiming the right to take potshots at everyone, and then claim immunity because you're so disabled and disfigured and diseased, and everybody should pity you, no matter what you do. It doesn't work like that.

Arthur Golden said...

Ms. Wombles,

1. I just noticed and quickly read this blog entry and brilliant insights which I would describe as dealing with the practical needs of helping autistics. I think I agree with the majority of your blog entry but 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

Autism Reality NB said...

If you want current research showing how best to help communicate with non verbal autistic children try ABA:

1. American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

http://aappolicy.aappublications.org/cgi/reprint/pediatrics;120/5/1162.pdf

Applied Behavior Analysis

Applied behavior analysis (ABA) is the process of applying interventions that are based on the principles of learning derived from experimental psychology research to systematically change behavior and to demonstrate
that the interventions used are responsible for the observable
improvement in behavior. ABA methods are used to increase and maintain desirable adaptive behaviors, reduce interfering maladaptive behaviors or narrow
the conditions under which they occur, teach new skills,
and generalize behaviors to new environments or situations.
ABA focuses on the reliable measurement and objective evaluation of observable behavior within relevant settings including the home, school, and community.

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of
research by using single-subject methodology21,25,27,28 and
in controlled studies of comprehensive early intensive
behavioral intervention programs in university and community settings.29–40 Children who receive early intensive
behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–40

It might also be helpful to review Professor Morris dissection (demolition?) of the Gernsbacher critique of ABA as an intervention for autistic children. In the review Professor Morris revisits the research and reviews of ABA effectiveness:

http://paulcoynephd.typepad.com/files/a-case-study-in-the-misreprensentation-of-applied-behavior-analysis-in-autim--the-gernsabacher-lectures.pdf

jypsy said...

Just a note for context about the available science at the time. Alex's supported typing took place from 1990-1995, from age 3 to grade 3. There was no good good science discouraging the use of FC or supported typing in the first half of that time frame.

Arthur Golden said...

Ms. Wombles,

D.2. As I wrote 4 days ago: I will not be able to post another comment here for about four more days. Now that the 4 days are up, I have prepared a rather long comment to the other blog entry on FC. Since this blog entry is a sequence to the other blog entry, I plan to try to finish our discussion of the other blog entry before commenting on this blog entry. I have noticed that Clay posed some questions to me at the beginning of the brilliant insights to this blog entry. I ask that he please wait patiently while I focus on the first blog entry first.

Art

Char Brandl said...

I wrote a rather long comment, but it isn't showing up here. I do hope people can find it - I was using the "easier on the eyes" option.

Char Brandl said...

Just to be sure, I will repeat my earlier comment here.

Kim,
It looks as though I have lots of fun reading to catch up on now that I have found your blog. You are a great writer and have obviously done lots of research in a variety of areas. I am honored to be included in your discussion and particularly appreciative that you see me as a caring teacher. Recognizing that I have only had time for a cursory reading of what you have written on Facilitated Communication (my favorite topic, by the way), let me clarify just a couple points.
I really AM talking about communication that is totally facilitated, or supported. Some of my students were able to speak, some were able to independently type and a couple could do both, but none of them were really able to carry on a conversation unless you wanted to talk only about their topics of obsessive interest. When I provided support to their hand, wrist or arm (the level of physical support varies from one person to another and changes as time goes on or even according to what we are discussing), AND with lots of patient, persistent practice AND emotional encouragement, we were able to move into back and forth typed conversation, true social interaction.
And yes, they DID then show us they were a whole lot smarter than any of us had imagined. They also blew away any misconceptions we might have had that they lacked compassion or the ability to understand what was going on around them. It was a very remarkable and humbling experience.
I am retired now, but still involved and I continue to meet people who are unable to speak but are able to type, give the proper support. Every time we have a new breakthrough, I have a profound sense of how much we are missing because the “scientific” evidence hasn’t yet shown this particular means of communication to be valid. It’s so sad!
May I recommend that you continue your search by looking into the study done by Don Cardinal and others (published in the journal Mental Retardation), by viewing the DVD produced for CNN by Sue Rubin – “Autism is a World,” by doing a Google search on Larry Bissonnette, Amanda Baggs, Jamie Burke, or Sharisa Kochmeister. I have also written a book about my personal experiences – “See Us Smart!” (Robbie Dean Press, 1999). If you want more specific information, just let me know.

KWombles said...

Hi Char, I looked and the comment shows at the wordpress blog; the conversations end up being in two different places, as commenting in one doesn't show up in another.

Thank you for the suggestions; I read Amanda and am facebook friends with Sharisa. :-)

Quiet One said...

I guesss I understand the idea of communication being "valid" only if the person is typing independently (as both Amanda and Sharisa do). But I work with young people who aren't quite there yet; they still need physical support to access the keyboard and organize their thoughts. They also need acceptance and beg for people to believe in them and see their intelligence. If we say their words aren't valid, we seem to be dismissing the possibility that they are indeed communicating. It's very defeating!

KWombles said...

@QuietOne,

"I guesss I understand the idea of communication being "valid" only if the person is typing independently (as both Amanda and Sharisa do)."

I'm going to try to wade carefully back into these unbelievably muddy waters. Validity means that whatever we're doing/measuring, we're really measuring it. So, for example, is the WISC-III a valid measurement of intelligence? No, it's not, because intelligence is a nebulous concept not really agreed upon. It's a valid measurement of the potential for traditional academic success. Of course, motivation and other factors play a big role in how well children actually do in an academic setting.

FC, as detailed in the longer article, as examined in the research studies, has been found to be overwhelmingly the communication of the facilitator and not the individual.

In other words, where the facilitator is engaged in hand-over-hand facilitation, the facilitator is unable to distinguish what is his agency/authorship and what is truly the client's. It is not an intentional co-opting, and there is no way to get around this. In other words, you can be perfectly aware that you may have an unconscious tendency to assume control and to answer questions that you fully believe come not from you but from the individual but be unable to avoid it.


"But I work with young people who aren't quite there yet; they still need physical support to access the keyboard and organize their thoughts."

Okay, I can understand your concerns, but there is absolutely no scientific evidence that a facilitator using hand-over-hand is helping organize the individual's thoughts by helping them type. And there are augmentative communication devices and other ways around hand-over-hand for communication that would avoid any authorship confusion.

It's a completely different thing to teach a child how to use a keyboard through a hand-over-hand method and another to think that the authorship is coming from the individual.

In other words, if you're using hand-over-hand as a teaching tool, talking to the child as you type, for example: "Cat, can you type cat. Look this is C. This is A. This is T. Look, we typed cat. Let's do it again," you're not doing facilitated communication. Does that make sense?


"They also need acceptance and beg for people to believe in them and see their intelligence."

Yes, they absolutely do, and it's an extreme denigration to their intelligence and to their value if someone is facilitating their communication and asserting they've authored something that they have not. Imagine how you would feel if someone took your hand and typed words with you and insisted it was your communication when it was absolutely nothing of the sort. You've not accepted them in this case. You have denied them a voice.

Everything on this blog, and I mean everything, has as its focus the acceptance of individuals not only with autism, but all individuals. To use, to believe in, a method that has been shown to be contaminated with facilitator authorship and then to assert that failing to use this particular method is tantamount to denying the autistic individual acceptance and a voice is such an offense to the individual. And as a mother to three beautiful children who have found their voices, the thought that someone could, in the context of helping them, have inserted his/her own voice for theirs and then insisted it proves their intelligence, it just astounds me, cuts me to the core, if you can't see what a fundamental rejection that is of the person.

KWombles said...

"If we say their words aren't valid, we seem to be dismissing the possibility that they are indeed communicating. It's very defeating!"

If you truly care, truly accept, truly appreciate the individual you are trying to assist, then you have a moral obligation to make absolutely certain those words are in fact that person's words. There are other, better options that avoid any authorship confusion.
It is indeed very defeating to see that people would rather hold onto their blinders than consider what the science has to show.
If you care, you remove the blinders to the best of your ability, and you make sure, damn sure, that what you're doing honors the individual, respects the individual, and accepts the individual. Truly helping them to communicate with their own words in a way they're comfortable with, in a way that makes certain it is their communication is a responsibility that should not be shirked because one gets impatient for results and because, gosh, when I do hand-over-hand I get so much better communication.

I encourage you to look around this blog, to look carefully at the literature regarding FC and to make sure that in your quest to accept the individual you don't ride roughshod over who they really are.

Char Brandl said...

Just a basic clarification. When using FC, I may be giving physical support to the person's hand, but it's not at all like the old hand-over-hand technique I used to use with my students -- teaching them to feed or dress themselves, for instance. With FC, I am providing backward pressure so that all forward movement toward the letters comes from them. I do everything I can to make sure they are the ones doing the typing. Often it is possible to fade support to a light touch under the wrist or lightly holding the elbow. I do wish you could see these guys in action.
I have worked with many, many FC users and many facilitators. I have only seen ethical use of the method, but of course can accept that the possibility exists that a facilitator might misrepresent what the person is trying to say. Unfortunately, that possibility always exists in any human endeavor. It's not a reason to deny a person the right to communicate. It does mean we should always exercise caution.

Char Brandl said...

Kim wrote: "In other words, if you're using hand-over-hand as a teaching tool, talking to the child as you type, for example: "Cat, can you type cat. Look this is C. This is A. This is T. Look, we typed cat. Let's do it again," you're not doing facilitated communication. Does that make sense?"

I agree. I might do something like this: "Let's try some easy animal names. Can you type the word 'cat?'" And then progress to asking for the animal that makes a meow sound. Unless I am working with a very young child, I do assume they would know much more than this, so I always remind them that it's best to start out with easy work till we learn to type together.
And interesting things happen when the process "clicks" - kids who could not sit and to anything in school were willing to stay at the computer to "talk." Kids with lots of behavior issues found a way to let me know what was bothering them, so that maybe I could change things and make school a more welcoming place for them.
We all started talking to them at a much higher level and including them in all conversations that took place in their presence. That alone made a huge difference.

I have no desire to argue. I DO love telling my story.

KWombles said...

Char,

It's more than a bit of misdirection to assert that not using FC denies the individual the opportunity to communicate, especially with all the adaptive technology that exists for individuals who, for example, have no cognitive impairments but have no ability to type: there are ways around it that do not allow for facilitator co-option of the communication.

In addition, in no way have I contended that facilitators were behaving unethically in their attempts. Once you've been made aware that the evidence clearly shows that facilitators cannot prevent the subconscious influencing of communication, it's unethical to use hand-over-hand communication and assert it is the individual's communication. It may well be the individual's communication, but if the individual has no way to confirm that, it is unethical to use it. It's unethical to use methods that have been shown to be ineffective.

Intentions may be the best, and the information on facilitation and the psychology involved in authorship and agency may indeed be lacking by the facilitator, but once that knowledge is not, to advocate the use of hand-over-hand facilitated communication is, at the very least, not a kindness to the individuals when they could have been provided with assistive technology that bypasses the facilitator completely.

Whether these things apply to you personally, I don't know and I'm not suggesting they do. It may again be a failure to agree on the operationalization of the terminology. Your assistance with your students may have completely bypassed the hand-over-hand or hand hand over wrist, and as a consequence avoided any possibility of it being co-opted communication. If that's the case, then how wonderful. But by definition, it isn't what's covered in the research. Where there can be no doubt about authorship because there was no way to co-opt communication it isn't facilitated communication. It may be supportive, but it isn't FC as looked at in the studies.

KWombles said...

Char, we were typing at the same time. :-) I would conclude then, based on your comment written at the same time as my last, that we're using the term differently, mine much more narrowly and specifically to where the potential for co-option exists.

:-)

Char Brandl said...

Yes, and you have given me some additional insights. When someone watches me using FC with a person who is unable to speak, they can't really SEE who is making the move toward the letters. If they have the "old" notion of hand-over-hand support, it would be natural to assume I am doing some guiding. I am NOT and sometimes I forget how important it is to make that distinction.

Getting back to your original concern - I really do wish more serious exploration (scientific studies, if you will) would be done to see just what is going on when these young people sit so willingly (and believe me they are not the type who do this ordinarily) and participate in typed conversations.

So many times I wished that someone could have been present with a video camera to catch those special moments when a child became truly communicative.

Arthur Golden said...

Ms. Wombles,

D.3. "Hand-over-hand" is not the definition of any type of Facilitated Communication and if you or anyone trying to test the validity of FC erroneously thought it was, then such tests are invalid and not appropriate scientific evidence about FC. I do use the term "full-support Facilitated Communication" which by definition is not Biklen's FC, but it does not involve hand-over-hand. To my great frustration, Dr. Biklen and the other major FC promoters never picked up this issue, which you have now so clearly stated.

In my comment on the other blog entry on FC, #42 posted April 2, 2010 3:24 AM, section C.9.l., I wrote two days ago (and I believe that you have not yet read it because it is part of a long comment that I had to split into 4 parts to fit on blogger) the following which is directly in point to the discussion here about "hand-over-hand" (see comments in this blog entry #16 from you, #18 from Char Brandl and #20 from you – but I will have the reply later to you in more detail and hopefully with more clarity – most likely after the end of the Pesach Holy Days in nearly 3 days):

"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."

Art