3/11/2013

A Warning: Protecting Our Children's Voices

I would dearly like to never again have to write about this. I don't think, though, that once more stepping out into these very muddy waters is going to do the trick. I'm still going to do it, although I would rather not. It's beginning to feel like a solitary exercise, but with the rise in people using FC and in promoting it (even when they have no idea they are), means I either cringe and duck and do nothing or I cringe and duck and once again say the same things I've said before.

I'll be honest, it was a whole lot easier to do this with anti-vaccine rhetoric and really quack treatments because I wasn't alone. Many bloggers were doing the same.

When it comes to facilitated communication and rapid prompting, the same is not true, and more and more bloggers appear to be either directly or indirectly embracing these two interventions.

It is a seductive message, one that parents and autistic adults alike are prone to believe. It feeds on our most devout wish, especially when confronted with non-verbal individuals who have no language--written or otherwise. The devotion of the facilitator also feeds into our desire to have a hero--two heroes, actually-- the individual himself and the devoted individual who believes in that disabled individual and who is able to provide teaching and support for, and most importantly faith in, the non-communicative individual.

Communication, once the facilitator is present, is usually instantaneous and miraculous. From no communication and a presumption of profound intellectual disability, there is sudden perfect communication at an advanced level and profound insights.

It doesn't matter if it's Biklen's FC or Soma's RP. The change is sudden and amazing and the gratitude and overwhelming emotion of the parent precludes skepticism. After all, there had to be a level of wishful thinking on the part of the parent in the first place to ignore the rejection of FC of over a dozen organizations at the national and international level. 

The arguments in favor of FC and RP are the same kinds of arguments that anti-vaccine people make for vaccines causing autism: appeals to belief, appeals to authority, appeals to popularity, and anecdotes. In some cases it boils down to "I know what I saw." These same individuals would deride this statement in an anti-vaccine individual yet see it as completely unproblematic  when used as their own support.

The battle against pseudoscience and quackery is never-ending, and no matter how certain one is that he or she is exempt for falling for any form of it, the reality is that we are all vulnerable. We may be perfectly skeptical against one message and yet embrace another and because of our innate biases be unable to see this, no matter how determined we are to avoid this. We are all fallible. 

I am not sure how we protect against this except to remain both vigilant and diligent and to own the possibility that we can be misled. 

Even when people will admit that FC and RP is probably quackery, they may contend that the harm is insignificant (see comments in the articles linked below). Ask the Wendrows and other families accused of sexual abuse if FC was harmless. True, most families who use FC and RP won't be accused, but the risk is there, especially when they are entrusting the facilitating to a stranger.

What is the harm, then? Why keep harping on this? Proponents argue that autistic individuals appear happier because they are being paid attention to, even if the communication is mostly the facilitators'. What could possibly be wrong with that? (See comments at the Science 2.0 articles for evidence of this argument)

I've argued for three years that a commitment to the profoundly disabled to honor and value them for who they are means making sure you don't co-opt their voices. You use the latest technology, you use best practices, and you work with the individual to make sure his or her communication is his or her own, and that whatever that level of communication is, is seen as valuable and good.

I cannot help but think that the need to deny profound intellectual disability is ultimately rejecting the innate value of all human beings, although I know that those who believe in FC and RP don't think that. I am not doubting that profoundly disabled individuals have the capacity to learn and grow. I am as  frustrated as I am because the very act of choosing Soma or Biklen's shortcuts almost guarantee that these individuals will not get instruction and AAC technology that they can use to communicate independently.  

We must learn to accept and value true diversity and what that really means: that functional levels vary, that some people will always need care, that some individuals will not be geniuses trapped in a non-cooperative body, but that their value is not lessened because they are not geniuses. 

I think most people who go to Biklen and Soma mean well, want the best for their kids, want them to reach their potential. I even think that it's likely that most facilitators believe fiercely in what they are doing and that they are freeing the disabled individual. Good intentions are not evidence of an intervention's effectiveness.

My three children are all impacted by their autism. My oldest has an intellectual disability that my youngest two do not. His value, his worth, what he means to me, how I treat him, the respect I have for him, are the same that I have for my girls. The girls are good at school work; he is not. His value is not predicated on being able to type graduate-degree level language and ideas, or for that matter, fifth-grade level work. His value is innate. He is amazing for who he is, his ingenuity at getting around his inability to spell or write well always delights. He embeds videos or audio files in his text messages to me--how creative and incredible is that? No one taught him to do that, no one suggested it--he figured it out on his own--a way to communicate in a medium that for him is relatively hostile. 

Everyone is different. Everyone is valuable. We all have issues and challenges, but when we work together, we can each surmount or go around those difficulties and contribute to our communities. Why isn't that good enough?

After three years of writing about FC and RP, I am stunned and saddened, especially with the technology we now have, to see how a new generation is ignoring what the last three decades of research and investigation have shown about FC. I am not optimistic. I fear for these individuals who are having their futures decided by the output of a facilitator.

Learning how to communicate takes time. We need to give our nonverbal children the chance to learn. We need to provide access to AAC and make sure that when we teach, we are really teaching and not allowing our deeply held desires to get in the way of letting our children learn at their own pace.

We need to be open, but skeptical.  When we hear wonderful, miraculous stories, but then see video of the individual NOT looking at the ipad or the letter board or the laptop, we should wonder.

And above all, we should wonder why the facilitator has to hold the devices rather than putting them down on the table and letting the individual type. Why does communication only appear to happen when the facilitator is beside the person, holding the device or the individual's hand?

This just shouldn't be the issue it is. It should be a no-brainer. We should want to make sure there's no way anyone ever co-opts the voice of another person. We should want to ensure that the instruction disabled individuals receive really is instruction, that their communication is genuinely their's. It isn't about doubting capacity to learn. It's about providing the opportunities to learn and accepting that everyone is different and that this really is okay.

And yet, proponents of FC and RP  will ignore my commitment and desire to make sure individuals truly are speaking for themselves and instead accuse me of not caring about the disabled.

Go figure.


FACILITATED COMMUNICATION RELATED POSTS

Facilitated Communication: Same as it Ever Was (Same as it Ever Was)
This Is The Song That Never Ends: Facilitated Communication
A Look at Facilitated Communication Posts and Disappointment
Cheating: There Should Be No Shortcuts (and FC is)
Confusing Terminology: When Parents Use Jargon Differently (or when facilitated is used instead of augmentative)
Facilitated Communication Quackery gets Journalistic Promotion in Annapolis
Facilitated Communication: A Price Too High To Pay
Facilitated Communication: A Review of the Literature (with a new introduction)
Fried Chicken Initiatives, Internet Laws, Cognitive Dissonance, and Self-Justification
Holding Educators Accountable For Evidence-Based Practices: FC Isn't One
Navigating the Autism World: Minefields at Every Turn (FC is still Bunk)
Skepticism of Stories to Good to be True
So if Facilitated Communication has been shown to be Pseudoscience, What's a Parent to Do with a Nonverbal Child?


5 comments:

Socrates said...

*claps* Deserves more of a comment but I'm having my own communication issues lately ;)

farmwifetwo said...

What's a parent to do with a non-verbal child... easy...

Hand him a computer, teach him to write and spell, then let him write whatever he wants.

His thoughts, his way.

Period.

Took us 10yrs... and to quote his Teacher... "It's awesome" what he comes up with.

kathleen said...

Bravo-(again). It sometimes feels as if the "community" that is asking for acceptance..isn't being inclusive of all its members. Seems that no matter what the story-if it reads positive-well then,it must be true..and heaven help you if you dare to criticize!-Ironic isn't it?..Thanks for writing about this (again)-I'm sure that the usual people will come by and call you names...*sigh* sorry for that

K Wombles said...

Thanks, Socrates. I hope you are doing well, despite the communication issues.

FW2, our kids are absolutely amazing as they are; why would we want to deny them the chance to shine on their own in their own time? :)

Kathleen, yup.

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