2/26/2011

Navigating the Autism World: Minefields at Every Turn (FC is still Bunk)

Some of the most naturally appealing stories in the autism world (and our wider world) are those stories that reinforce the myth of the self-made man (a concept I coincidentally taught this week in American Literature). We like movies like Rudy, All the Right Moves, and the Mighty Ducks series because they feed the myth, the feel-good notion that no matter how far behind one is, how disadvantaged, that plucky teamwork, determined effort, and good fortune will be enough to overcome all obstacles, make the team, win the game, and the woman (or man), and get out of the miserable situation you were originally in.


It's not just the staunchly biomedical and "pro safe" vaccine camp who champion stories of miraculously overcoming the odds, though, through tremendous intervention. One difference, however, is that the champion in the story is usually the parent, in the biomedical side, who valiantly did everything to overcome the odds, who tried every treatment, climbed every mountain, hit all the Sound of Music high notes, in order to recover their lost child. Other camps within the autism community may instead champion the autistic individual himself (which can rightly be argued as placing the focus where it belongs).


It's unfortunate but true that even in areas of the autism community where evidence-based practices, scientific research, and a respect for neurological differences are the norm, that a too-good-to-be-true story is applauded and carried on as true without the usual skepticism and requisite of proof.


And where the focus is completely on autism as being a different way of being, the woo is just as likely to be heavy as it is on the biomed camp and facilitated communication gets not only a free pass, but a jump start and carried across the finish line. There is something romantic about the idea that people who are severely impaired, unable to speak, unable to perform academically, are simply locked in their bodies, and that with just the right tools and help they'll demonstrate the inner genius, the gifted poet, that is hidden to the larger world.


There's just enough kernel of truth to the concept of locked-in syndrome that this is an easy area, ripe for exploitation, both by well-meaning parents and educators as well as those who see a good con when they find one.


Reasonable people, watching videos of individuals being facilitated, who are acquainted with the research, aware of the ideomotor effect, and interested the safeguarding of the rights of the severely disabled, cannot in good conscience support facilitated communication. There are plenty of assistive technologies that are available and will help the nonverbal person to communicate without ever taking the chance of a facilitator co-opting the communication of the disabled person. 


James Randi wrote in January, regarding the recent $1.8 million settlement to the father who was falsely accused of sexually molesting his autistic daughter:  "The notion that FC is a legitimate treatment is still entertained by the na├»ve, and enthusiastically encouraged by Syracuse University, by Professor Douglas Biklen – a sociologist and professor of special education there – and by others who have chosen to ride this dreadful mare all the way to Hell."


 We have an obligation as parents to children on the spectrum to demand proof where treatments are concerned. We have an obligation to protect our children and their unique voices, however they are able to communicate. We have an obligation to not let our own desires concerning our child override our child's personhood. Some of the most negating things a parent can do is place words into their child's mouth, to not see and respect the child for who he or she is, to not think that whatever the level of impairment, the child has innate value and the right to respect and to be accepted just as they are.


When we advocate beyond our children, when we are promoters of evidence-based practices, we should be careful not to fall into the feel-good trap of promoting stories that may, indeed, be too good to be true. It's hard to resist the pull of feels-good story, the lure of a miraculous tale of success despite the odds. If you watch CNN's Sanja Gupta for any amount of time, you see he's never met a too-good-to-be-true story he couldn't help but accept. It's understandable that our desire for something to be true can trump that inner skeptic who asks wait a minute, show me.


It is all too easy to co-opt a person's communication with facilitated communication. This young woman below put together a stunningly simple explanation of FC. Reasonable people watching this video have to give serious consideration to the idea that it is ridiculously easy to co-opt the communication of other, especially a passive participant and that parents and well-meaning educators may be letting their desires over-ride what an individual can actually do.







If that's not enough, I'd encourage you to examine video footage of FC and look carefully at how it's being done. Where is the facilitator? How is the facilitating being done? Where is the individual being facilitated looking? Has the facilitation been independently verified? Are complete answers being provided with one button push? 


Other FC/RPM articles I've written and co-written:



Questionable Autism Approaches: Facilitated Communication and Rapid Prompting Method


3 comments:

kathleen said...

That was actually a good video..The only other one I have seen was the documentary on Soma. At first I was intrigued..but as it went on-It became incredibly obvious how she was manipulating the people she was supposedly facilitating.
I totally understand-especially from a parents perspective-"desire". Unfortunately, there are too many that also understand and cash in on it..

KWombles said...

There are a fair number of videos on youtube; it's pretty easy to see once you're looking for it, how the facilitators are doing it. And if you can get one of your kiddos to play along and be passive, with a little bit of practice you can manipulate their arm to get the message you want typed; the more passive, the farther away from the hand you can get.

TherExtras said...

LOVE your first paragraph! That wisdom should be applied throughout parenthood, and education.

Barbara