Monday, November 12, 2007

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.

17 Comments:

Anonymous Ms. Clark said...

I hope people don't assume that I'm one of the hard line skept types who thinks FC is mostly bunk. I don't think it's mostly bunk. I think it has been badly exploited by some, maybe many, but the phenomenon of someone typing his or her own thoughts while it looks like someone else might be forcing the person's fingers to type certain things or point to certain things is real.

There's no reason to doubt some of the people who have described the experience of not being able to move until someone touches them on the elbow, etc, and Amanda has a video of herself typing with one finger while looking at the ceiling so the fact that an experience typist might be looking away while typing, that alone doesn't prove that there isn't real communication happening.

I realize that FC has been abused. I also think it's abusive not to try it if there is evidence that the person knows something about how to spell. Obviously if the person has no concept of spelling in a particular language you wouldn't believe that he was really communicating by way of spelling, like you wouldn't believe that a two year old who has never been exposed to another language could, with the help of a fluent in Hungarian facilitator, type out messages in Hungarian.

I think it's wrong to totally disregard the experiences of people who say they can feel the typist resisting them and going for a certain letter on a board. I think it's a good thing to rigorously test out such claims. I think it would be evil to never offer some version of FC to a person who can't seem to motivate his own fingers to move all the time, if using a facilitator gives him a chance to "speak."

1:18 AM  
Blogger jypsy said...

Looking forward to Part 2. I believe we're likely to run into a bit of a semantics problem, at least that has been my experience in the past.

Perhaps Alex will offer up some thoughts on whatever you post. Alex used "FC" from age 3 to grade 3.

And ditto Ms. Clark...

4:54 AM  
Blogger Alyric said...

Hey Jonathon

When I read the first paragraph, my first thought was 'hang on a sec', this is just the prejudice to be expected from the behaviourist school of thought. Remember - no respect for the innate, autonomy etc. And before you say 'yes we do', I should add that feelings, emotions, motivations a la behaviourism circle back to reinforcement histories at some point. Going to argue that ? :)

I'm with the inestimable Ms Clark - the exploitation of the few counts for very little against the testimony of the people for whom this was a gift beyond price. Also as Ms Clark has pointed out - the pre motor planning issues are there and no amount of M&Ms is going to change that but FC just might.

7:15 AM  
Blogger Chaoticidealism said...

This comment has been removed by the author.

7:30 AM  
Blogger Chaoticidealism said...

(Sorry. Previous post didn't say what I meant it to say. Am re-wording.)

Agreed. We ought to go for exchanging opinions, understanding each other, and ferreting out the truth, rather than just insisting others believe what we say simply because we say it.

I have not yet seen FC in action, though I have read a great deal about it. My own autism is relatively mild and I have never needed to communicate without spoken words (though I greatly prefer it); but I am familiar with the phenomenon of being "stuck" and unable to do something because I can't figure out what to do first. Depending on my state of overload, the task can be as complex as a calculus problem or as simple as walking to another room to get an item. It makes sense to me that people who routinely get "stuck" like this might gain quite a lot of help from someone who got their hands moving in the right direction.

However, it is rather easy for the facilitator to force his own message. I read a book about FC (I forget which one it was, but I think this one was pretty famous) in which a girl with CP was able to guess which letters her facilitator wanted her to press with her facilitator touching nothing but her ponytail! (It turned out she was actually getting messages of her own across, though--and it does take a lot of perception to do what she did.)

Still, I'm well-aware it's possible to cause someone to say something they don't mean to say this way, and that's dangerous. Not only would it take away real communication, but it could take away someone's rights by causing people to assume they want something they do not want... it blocks the right to speak for oneself, even if it is only in wordless noises or gestures, by assuming that the person is speaking already. That is obvious to the most ardent self-advocate, and I think it's safe to say we have no wish to see false FC used--ever.

My own goal is to become an engineer, in order to design better communication devices... perhaps one of these devices will be capable of providing a facsimile of FC without the troublesome possibility of facilitator input. This would be pretty sophisticated, though... it would have to detect the difference between "stuck" and "thinking"; the difference between "perseveration" and deliberately typing something twice or more... I don't know if it can be properly done; but with computers becoming ever more powerful and flexible, perhaps it can. I hope so.

7:35 AM  
Blogger KeithABA said...

Alyric: "Remember - no respect for the innate"

I think that is an odd statement, since behaviorism had a stong foundation in working with behavior that was innate. Another term for innate would be respondent, meaning that the organism requires no prior learning history in order to engage in this behavior.

As for Feelings and Emotions, there are several good arguments that these can occurr without any prior learning experience, kinda like pain. That does not mean however, that these types of behavior are not also subject to the control of environmental variables and operant conditioning. The main reason behavism tends to stay away from private events is simply the fact that it does not make for a good dependent variable because you can't obtain interobserver agreement.

Your attempt to insult positive reinforcement procedures indicates that you perhaps don't have a solid conceptual grasp of the philosophy of behaviorism. I suppose you also assume that behaviorists think they can fix parkinsons, cerebral palsy, and paralysis by attempting to positively reinforce movement. Nope, we never thought about physiology.

Chatoicidealism: Very interesting comments, particularly about feeling stuck. Touching someone's elbow to get them going again is very different to me than holding your fingers over another individual's and prompting individual keystrokes.

"I think it's safe to say we have no wish to see false FC used--ever"

I don't think it was ever the intent of the people who misused FC to actually "misuse" it. I think people were just excited, and thrilled by the fact that they thought their family members could communicate with them.

10:38 AM  
Blogger jypsy said...

This new manual of Portia's seems to have the FC world all abuzz today....

1:01 PM  
Anonymous Ms. Clark said...

From what I understand, people who use FC (the typers, not the facilitators) understand how much "emotional pressure" some facilitators exert, because they feel it.

I don't know how it could be that any human could have an interaction of any sort with any other human without their being pressures to say and do certain things. Svengali is not a story about an FC facilitator is it? How many women say only what their husbands would allow them to say, how many employees say only what is safe to say, etc, etc.

So yes, the issue of pressure from one person to another is real. That doesn't mean that the issue of some people needing help to type is all created because of the "svengali" types.

To me, ABA is purely about making the ABA therapist the puppet master, and all about pushing buttons, in this case rewarding or punishing what the puppetmaster ABA therapist wants to see done at any given moment. Talk about emotional manipulation and it's never discussed, as far as I can see, the extreme emotional abusiveness that is inherently there in ABA. With apologies to Jonathan who no doubt is not emotionally abusive, but very sincere. I would say that James Mulick, for example is extremely emotionally abusive. Period. Lovaas, too.

Thank you for the ditto, jypsy, and also for the kind words, Alyric. :-)

2:35 PM  
Anonymous Anonymous said...

Got a problem with the dual opposition of skeptics and self-advocates even if there's qualifications put on. Didn't know skeptics all had to come to the same conclusion when our skepticism was applied. Plenty of self-advocates think FC is a load of crap. Plenty of skeptics don't. Doesn't work like that.

3:06 PM  
Blogger Alyric said...

Keith said" Nope, we never thought about physiology."

Aware of that from the course material of the average BCBA certified therapist.

3:20 PM  
Blogger Interverbal said...

Thank you everyone for your comments and insights. I am surprised by the robust response this preview of the upcoming post has produced. I think this is evidence for my argument that FC is one of those issues that are important, but reside just under the surface at Autism Hub.

I think I am most impressed that despite the strong feelings this topic obviously engenders, that we have been able to maintain a rough courtesy. Skeptics and autistics are two groups who are well known (to make a very general statement) for making blunt comments. I would be quite amazed if we don’t see a great deal of bluntness following the 2nd part of the series. However, I really hope that the point of this 1st post isn’t disregarded and things of value are not lost.

I notice that behavior analysis has popped up in the current thread. I think behavior analysis can be discussed, criticized, or otherwise commented on, but I worry that this isn’t the series to do it in. It is no secret that many posts of behavior analytic nature are to be found on this blog. I would prefer to regulate behavior analytic topics to those posts. That is, unless the commenter thinks that some aspect of behavior analysis is quite entangled with some aspect of FC and must be dealt with. If so, carry on.

Many of you have asked questions or made points in this thread that should be answered. I will endeavor to do this below.

As final note when the 2nd part of this series is posted very late tonight or perhaps early tomorrow, the comments in this current thread closed. Please direct all comments to that section.

5:07 PM  
Blogger Interverbal said...

Jypsy,

I welcome any comments, criticisms, or insights Alex chooses to offer.

5:08 PM  
Blogger Interverbal said...

Hi Alyric,

I am afraid you have me in terms of being a behavior analyst; it is an undeniable charge. But is this logical grounds by itself to challenge my assertions?

Who else might be wrong because of who they are.

Michelle Dawson is a cognitive scientist. Aren't her criticisms of ABA merely to be expected from someone from that paradigm?

Interverbal aligns with empirical epidemiology. His criticisms of the way advocates like Kirby use the CDDS are to be expected of such a person.

Joseph over at the ANV blog is likely autistic. His disability pevents him from seeing the truth about his state of being. Any criticism Joseph offers concerning biomed are to be expected of such a person.

All three of these arguments have actually been made. You are welcome to explian why your comment stands, while the three I have echoed are invalid.

I think your commenting relating to thoughts, feelings, and emotions does not fit the current topic. If you still wish a response I encourage you to post it on a behavior analytic thread. If you do so, I promise to answer it, although Keith has already done an admirable job.

Alyric, you write "the exploitation of the few counts for very little against the testimony of the people for whom this was a gift beyond price."

I really think this could apply to any autism teaching method or treatment, even the most quacky.

6:35 PM  
Anonymous mayfly said...

I find this fascinating. If you read the research, several papers published in The Journal of Autism and Developmental Disorders" it seems when the FC user is separated from their facilitator the ability to communicate drops precipitously. In most cases it is the facilitator doing the communication and most often subconsciously. Although facilitators have been known to do so purposely, most often they have no idea they are doing so.

There are however papers which suggest some children, 10% or so may actually benefit.

I find it interesting the discrediting of behaviorist as it is very much analogous to the shouts of Big Pharma. Are anecdotes in this area taken over peer-reviewed research because that research showing its ineffectiveness is done by behaviorists.?

6:40 PM  
Blogger Interverbal said...

Hi Anonymous,

“Got a problem with the dual opposition of skeptics and self-advocates even if there's qualifications put on. Didn't know skeptics all had to come to the same conclusion when our skepticism was applied.”

Is this what I argued?

“Plenty of self-advocates think FC is a load of crap. Plenty of skeptics don't. Doesn't work like that.”

I think the self-advocates bit is a fair addition, although I did note the dissenting skeptics.

I think on the whole, I am going to stick with what I wrote. I think it is a fair representation of the sides, although not universally true. If suppose we can start citing names either way if you like.

6:41 PM  
Anonymous Anonymous said...

You could just cite the opinions. It's not necessary to condense everything into two sides. Doing that leaves people with false impressions.

11:12 PM  
Blogger Interverbal said...

Hi anonymous,

You are right, I could just present the opinions.

However since I think this is a matter of two seperate group orientations, albiet, with some overlap, that wouldn't be very intellectually consistant of me.

I wrote what I wrote for a reason. I don't mind being corrected, but I don't agree with your correction in this case. You are welcome to continue to pursue this on the new post.

This thread is now closed.

11:29 PM  

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