A reminder of what we do and why

On March 3rd, “An Open Letter to My Son’s Skeptics” was posted the as a blog entry on the International Association for Spelling as Communication (I-ASC) website. The I-ASC promotes a variant of facilitated communication known as Spelling to Communicate (S2C). S2C, like the Rapid Prompting Method (RPM), involves a facilitator or “communication partner” holding up a letterboard while the person they are assisting extends an index finger towards different letters. The former’s eyes are glued to the keyboard; the latter’s may or may not be, but the moment the communication partners leave the room, all communicative typing grinds to a halt.

The open letter addresses “a small but vocal group of individuals who are actively working to undermine” individuals who communicate this way by insisting that “what they communicate can’t possibly be their own thoughts”, and asserting “that they are being manipulated, either consciously or unconsciously, by the individuals supporting them.” 

The letter accuses this group of “continuing to demand… again and again” that such individuals perform message passing tests for them. It also claims that the group’s “primary argument is that, back in the 1980s and 1990s, some individuals could not execute a ‘message passing test’ developed by researchers.”

It would be contrary to the skeptical nature of our group to assume that we are the people to whom the author is referring. 

For one thing, as is made clear in our Research section, studies dating back to the 1980s and 1990s are only a part of what we see as overwhelming evidence against FC.

For another, we don’t make it our business to hound parents who have already committed themselves to FC or to harass the children who are being put through it. Our concerns lie elsewhere. We’re concerned about parents who haven’t yet chosen this path, but might. We’re concerned about individuals and organizations that promote FC and prey on vulnerable parents. We’re concerned about books, movies, documentaries, articles, studies, advocacy statements, and judicial proceedings that uncritically embrace FC and treat FCed messages as the authentic communications of the facilitated individuals. We’re concerned about public funds going to FC services, and about schools that are being forced to provide them.

Whether or not we are the author’s intended target, I had an exchange with her on my personal blog this morning. As I wrote there: 

The history of science is indeed full of examples where the consensus turned out to be wrong. The initial rejection of the theory of continental drift is another example. [She had cited the now infamous rejection of the hypothesis that ulcers are caused by bacterial infection.]

…

It could be that the Ideomotor Illusion, the Clever Hans Effect, and everything we know about Joint Attention and language acquisition, about Joint Attention and incidental learning, and about how children learn to read and spell will turn out to be wrong. It could turn out that claims that autism is a disorder of mind-body connection, and/or a disorder of intentional action, and/or a disorder of attention that explains message passing failure, will turn out to be true.

But, as far as I can make out, we’re nowhere near that point.

In the mean time, I feel it’s better to put scientific rigor over the naked eye. A long time ago, my naked eye told me that my son (who also turned out to be autistic) couldn’t possibly be deaf. After all, he was clearly responding to creaking floorboards and fingers that snapped behind his back. He was also expertly tuning the radio past all the static to the clearest possible signals. It turned out that my eyes had tricked me: he is profoundly, profoundly deaf, and could never have heard any of those things. Only after his hearing was subjected to rigorous testing did I figure out what had really been going on when I thought he was responding to sound.