4/11/2011

Cheating: There Should Be No Shortcuts (and FC is)

While I don't think it can be said by any means that facilitated communication is one of the more frequent topics I write about (with over 800 posts written in two years, less than a dozen have been about FC), it is one that has popped up regularly since I first wrote about it a year ago. The last two pieces I've written about FC have been in collaboration with Dr. James Todd, who's been wading the FC waters for twenty years. His expertise is humbling for me, and I've learned a lot in the last year about FC that I didn't know a year ago. And what I'm learning is, if one is dedicated to the rights of the disabled individual, horrifying.

Not surprisingly, the advocates for FC find that judgment less than satisfying. The same few individuals show up at every piece posted at Science 2.0 to school us in how we're wrong, and even yesterday to tell us we're "causing severe harm" with our position. The comments are perhaps more illuminating than the post itself and worth the read.  Examining the positions of the two sides: pro-FC and anti-FC reveals that one side, the pro-FC, ignores the weight of the scientific evidence, the AAP's and the APA's (and other organizations') official rejections of FC. They do this in favor of their anecdotal evidence which carries all the weight for them that the vaccine injury story carries for the parent who's firmly committed to the concept that vaccines caused their child's autism.

What might be surprising, though, are the places, the groups, and even the individuals who provide support for facilitated communication even though most of them would, if they recognized what was going on, have to deal with the fact that a debunked modality is being used in which the communication of the individual is clearly being co-opted. I say clearly, but perhaps it's only clear when you know what to look for and are willing to look for it.

Seeing FC happening in the middle of a feel-good story makes for some awkward decisions. What do you do when you read a story about an autistic individual graduating from high school and going off to college with his facilitator? Nothing like being a wet blanket is there? Or when you see videos going viral of a person suddenly freed from their 'silent prison' and able to communicate deep, intricate thoughts once they've gotten a facilitator?

I think most people hear these stories and are charmed, captivated by the possibility that the idea that the intact person exists, trapped behind autism, and they've become unlocked. I think this is true even in people who would be offended if an anti-vaccine parent talked about recovering the child from autism and setting them free; the two are not, in their minds, equivalent at all, especially since the facilitated person is clearly still autistic.

One of the arguments that facilitated communication proponents offer is that autistic individuals have such poor fine motor control that facilitation is necessary; however, one can see that the autistic person may indeed exhibit fine motor skills past the normal individual's fine motor skills.

I know, all too well, that when these feel-good stories come along, that there is often little I can really say. Videos of the individuals being facilitated are often cut so that you cannot see what the person is typing at the time, or how the facilitator is positioned. But occasionally you get lucky, and you can, if you know what you're looking for, see the elbow cupped, or my favorite, the facilitator holding one end of a stick while the client holds the other; boy, the typing is fast then. Even more obvious are some videos you can find on youtube of a child being restrained as he tries to run away, as he independently speaks, and while the parent holds that arm and the typing continues. Paid facilitators would tell you (and do) that this is the genuine communication: the typed communication, not the spoken. See, there's a disconnect between the autistic person's speech and thoughts, too. Not only are the fine motor skills impaired, so is the speech, so that the only way the person can genuinely communicate is when the facilitator helps.

The parents rarely go for independent verification, either, so that the legitimacy of the communication can be verified. Nor are videos going to be shot so that you can see everything going on. And you're just not going to get people who've bought into the claims of FC to reconsider their positions, regardless of the harm FC causes. Dr. Todd writes eloquently of this at Science 2.0.

At our latest post, my motivation for writing against FC is questioned. Why indeed should I tilt at this windmill when so many in the community either ignore it, pretend what's happening isn't FC, or outright support it by speaking at FC conventions or even worse, financially supporting Biklen? After all, Biklen has a large university supporting his efforts, he publishes books and produces films on it, and it's all feel-good stuff. Who's harmed, really?

Except for the individuals themselves who may find themselves sitting in classrooms earning college degrees because that's what the parent wants or being trotted out to events to showcase their story (and yet, we're willing to assert that some of the anti-vaccine people have M√ľnchhausen by proxy?). Except for the parents who may find themselves behind bars because the facilitator's fabricated a story of abuse in which one or both of the parents were the perpetrators. Except for human rights in general.

This issue gets me fired up because it should get all of us fired up. We get so hot under the collar about parents chelating, HBOTing, nicotine patching, etc, but we don't spare any outrage for the idea that nonverbal (and sometimes VERBAL) autistic individuals are taken advantage of and words, ideas, thoughts, feelings, accusations are put into their mouths that are not theirs. This doesn't make us scream out in outrage?

I get desperately wanting to hear 'I love you,' to want that communication, that language, to believe that despite all appearances to the contrary, the severely autistic child in front of you is actually a genius trapped away who is paying attention to absolutely everything, but...but...but when you use facilitated communication, you're cheating. You're cheating your child and yourself. And it isn't right on so many levels.

There are alternatives to FC. FC is never ethical to use if protecting the rights of the individual is your primary goal. Our most vulnerable deserve our very best. They don't deserve shortcuts that put words and abilities onto them that are not them; it is a devaluing of who they are to say what they are capable of is not good enough.

So, yeah, I'm motivated. And I'm so motivated because it could have been me and Bobby once upon a time. So easily, it could have been. And I find that horrifying that my needs to reach him, to get him to demonstrate that he understood more than he could show would ever lead me to cheat for him, to shortcut it, because once you do, once you believe in FC, you quit trying to get that independent communication, you quit looking for alternatives and for skill building.

9 comments:

farmwifetwo said...

Lost my first comment... sigh...

People want FC to work b/c to get to this point, where he wrote what he wanted to say for "show and tell"... is a LOT of work. "today i brought woody and buzz. i brought my toys for show and tell. woody is a cowboy. buzz is a astronaut. woody and buzz are from toy story".

We have nearly perfect spelling, but he checks it constantly with the speech feature on Ww/S. Doesn't sound correct he wants it "spell, please". Correct it once, you never do it again.

This is 9.5yrs of teaching. This is being in a room since Sept with a Teacher who's primary goal is communication. This is 7mths of daily "write on the computer". And it started slow... very slow. After being taught to only do "Today is, we are doing", getting him to type what he wanted was nearly impossible. Yes, she had to push with her typing, with typing whatever he happened to say, with her asking questions and her typing when she couldn't get him to do it, with him saying something and FC typing it on the screen.... That was FC but it wasn't him doing it and she and I both knew it. That was teaching. Teaching him to understand that he could put all those pieces floating around in his head together. Both at the computer and orally with the children at circle/calendar times.

The SLP told us that he has all the words, that he is able to build phrases by listening but he still needs to learn to use them to answer questions and other general situations... He needs to be taught the answers. Hence being on the ACS waitlist. So, using this info from the ACS meeting, we set to work to do exactly that.

FC as a tool to show a child how to type 2 hands... is fine. Using FC to show a child to use a mouse and making noise and lights on the computer... again teaching. To type what they are saying either yourself or using their hands to see the words on the screen... again teaching.

But I tried to do FC a few days ago fixing a spelling word for him... sounding it out and giving him the letters... He knows where the letters are and even consciously telling myself to wait, it didn't work. He waited for me to move his hand or I simply out of habit moved it for him.

And he can read (gr 4), spell (gr 4) and type (slowly hunt and peck).

It doesn't work.

r.b. said...

You.are.gorgeous.
I was thinking yesterday it's a lot like those ouija boards.

Life in the House That Asperger Built said...

It is a lot like ouija boards. That's true.

Great post.

Sirenity said...

Wow,Kim! Thought provoking post with just the right touch of gentle with such honesty.
Hugs and Laughter,

Michael Hricko said...

My name is Mike. I FC. I also type independently. 12 years it took to build that skill. FC is about freedom of thought as much as communication. I learned to isolate myself from my facilitator. It is through FC that I learned my skill deficiency. Locked-in I am. Sensory dysfunctional I am. It breeds a different reality of experience. Life is not about FC. It is about searching for a sense of belonging. FC is no picnic. I don't think my Mom would say she enjoys doing it with me. It is unhappy communications, not just "I love you's" It is hell even at the start for some. I am not proud to FC. I am proud to have used it to build my independent typing. It is not what FC is, but what it needs to promote development of that needs to change. But, to deny one a voice because another is more able motorically is not fair. I offered to validate my independent typing and Todd would not even acknowledge me as a person. Do you have to prove your humanity before you are offered a discussion with him? It is no wonder repore is such that valid testing can't take place on independence. I am inconsistent in my motor, but my voice is strong. Live in my body, then speak for me. You do the very thing you accuse the facilitators of doing.

Michael Hricko

autismandoughtisms said...

Excellent post on an important topic Kim, thank you for not letting up, and continuing to raise awareness about this. I don't mind that you do lots of posts about FC, in fact I think it's admirable that you are so passionate about educating people about the dangers and misinformation involved in FC. I learnt a lot about FC from your posts on the topic, and I'm clearly not the only one.

James T. Todd said...

I am puzzled about the statement, "I offered to validate my independent typing and Todd would not even acknowledge me as a person."

As far as I can determine, I have never received any communications from a Mike Hricko, much less one consisting of bona fide and verifiable request for me to conduct a methodologically sound, objective authorship evaluation of facilitated communication. I have a statement from Holly Hricko, attributed to her son Mike Hricko, which appears to be an offer of a demonstration. That is something very different.

As for the "acknowledge as a person" statement--smear, really--so that there is no misunderstanding, let me be 100%, perfectly, completely, and totally clear. It is my deeply held view that the intrinsic worth of any individual has no relationship whatsoever to his or her ability to communicate as I am doing now, whether by typing, writing, speaking, or any other means, at any level of competence.

It is not I who is so intolerant of those who cannot communicate in words and sentences that I would grab their hands and force them to type words of my choosing and assume an identity of my making.

We all come into the word without speech. Some remain that way despite our best efforts to help them join us in the gift of language. To suggest that such people are not people is bigotry. To make them into simulacra of the speaking, rather than respecting them for who they are, is something even worse.

James T. Todd, Ph.D.

Michelle said...

As a graduate of Syracuse University, I continue to be embarrased by Biklen's appointment there. Tenure can suck sometimes. Please keep up the great posts on FC.

KWombles said...

Thank you all for your comments; I appreciate them.