You can't judge a book by its cover

 I watched the TV show on 20/20 last night about Facilitated Communication (FC). It is a process by which someone “facilitates” the movement of someone with Autism such that it appears that the individual with Autism is able to select keys on a keyboard and by typing they are able to express themselves. The story revealed last night spoke of a family’s plight after their teenage daughter, through FC, made references regarding sexual abuse by a family member. After being terrorized by police interrogators and prosecutors the case was dropped for lack of any credible evidence other than the FC. The sad part was that as far back as in the nineties FC had already been proven to be not valid. For example, if the person facilitating did not hear the question or was presented or was presented with a different picture than what the person with Autism heard or saw no intelligible answers were even recorded. The researchers never suggested that the facilitators were purposefully injecting themselves into the responses but that there was a “Savior Effect,” going on. So for the investigators to ignore that whole chunk of research was very damaging for the family. (They did later get a legal settlement from the police but no apology.)

Parents and educators and therapists that live and work with individuals effected by severe autism will be the first to understand that wanting to unlock the “voice” of the child is always up most in their dreams. Not being able to communicate with the world and the resultant frustration is often one of the roots behind the severe behaviors that are seen. In the 90’s I got to witness first hand parents and staff that believed that FC worked. Some of the theory purported to support why it “might” work even made some sense. Individuals with Autism often have trouble with motor planning, which means that they do not have good control over their brain directing their body to move. The facilitator was thought to help the body over come the initial “start” mechanism of motor planning. The interesting part about being involved in a field of study long enough is that you get to see some of the exciting discoveries and some of the stumbles.

Even before the results of professional studies on FC began to come out, many of us were concerned that observed results with students clearly depended upon who was doing the facilitating. Never a good sign for scientific methods…

What did happen about this same time though were advances in electronics and augmentative communication devices that made it easier for students with difficulty speaking to communicate. Sometimes they connected using a series of pictures. Some students were able to advance to using words or even spelling once they realized how powerful and helpful being able to communicate could be. Few individuals outside the field of language development understand how complex learning to communicate can be. Easy enough of those babies that learn naturally from birth but have a few sensory or brain processes scrambled at an early, early developmental age and all bets are off. Not all those students with Autism that appeared severely effected required another person to hold their arm or wrist anymore. Some managed to develop the motivation and the motor ability to move on their own. And some of them did have a lot to say. Those parents that wanted FC to work were not crazy. They just wanted to believe in the possibility of the child locked behind the silence.

You "can’t judge a book by its cover" is a habit that has to be shaped and practiced in a society that is more often known for the power of “first impressions” and marketing appeal. I find the same message important as the dogs and I visit in the health care facilities. What do we really know about what is working or still working in another’s brain, in another’s senses? We don't get to see the fMRI. We first need to presume that there is a human being in there with his or her own opinions and thoughts regardless of what appearances may demonstrate. If there is even one in ten that is thinking silently without words would we want to miss that one? And the wonder is that with therapy some of those individual find a way.  But the likelihood increases if someone believes enough to keep looking and listening for them.

So no, FC was not a valid technique for communication but it did remind folks in the field to keep hunting. The blessing is that developments in technology were able to follow that did open up possibilities for many individuals with disabilities.