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 naïve, 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
Facilitated Communication: A Price Too High To Pay (cowritten with Dr. James Todd)Facilitated Communication Quackery Gets Journalistic Promotion In Annapolis
Why Rapid Prompting Method Still Doesn’t Pass the Evidence-Based Test
Facilitated Communication: A Literature Review
Comments