What messages does Facilitated Communication communicate?

And now for my promised but much-postponed discussion of the actual messages generated by Facilitated Communication (FC).

Some of these messages can be seen being typed out in real time (via the links I inserted here, here and here). These include:

• “Forget labels. My autism does not define me”
• “I think I was lost in some way. I know I was retarded meaning I acted like my worst nightmare.”
• “I find that only FC allows for fully telling people what I want to say.”
• “I find that I need a lot of practice to become fluent”
• “Took a year before I was able to type with fading support”
• “I am not stupid as some people used to think”
• “I would not get to this stage if I did not get full support initially”
• “The truth is I am always trying to promote open communication to show that is what I do all day and I am getting really tired of people insinuating that I wear a puppet string because this is hard enough without people rooting against me.”
• “My voice works it’s the words that come out that throw people off the intelligence trail.”
• “The beauty of my mind is often ignored by my difficult body that is very childlike in movement.”
• “Doing fish lips to the audience is an expression of funny playfulness but can be interpreted as simple mindedness. Silliness is acceptable in those who are believed smart but for those like me it indicates stupidity”

Other messages were purportedly generated off-screen. Examples include:

• “Until I learned to read and write, people thought I had no mind.”
• “Because you can’t speak, they assume you can’t hear, or think, or feel”
• “Reading and writing are rarely taught to non-speaking autistics. You plot to get my people free? Hope to help the other kids have meaningful lives.”
• “My heart it set on Oberlin. I want to be its first non-speaking autistic.”
• “My senses always fall in love / they spin, swoon/ they lose themselves in one another’s arms / your senses live alone like bachelors / like bitter, slanted rhymes whose marriage is a sham”
• “Autism is a world so difficult to explain to someone who is not autistic. Someone who can turn off the particular movements and actions that take over our bodies.”
• “Confidence is a hard thing to display when one is autistic. For other people, actions and mannerisms openly display their confidence. But the gift of autism prevents me from actively controlling my actions and outward mannerisms. I can’t speak. I have to use a computer to transmit my thoughts and feelings. Other people express confidence by the tone of their voice. I have no voice. I have only the monotonous voice of my laptop computer. I have no idea if my laptop displays confidence, but it sure has helped me combat the ravages brought by this insidious gift.”

There are few things to note about these messages.

First: in both style and content, they’re highly stilted. They show little personality–particularly personality of the sort one would normally associate with kids as young as these are (most of them are somewhere between nine and nineteen). When my autistic son was in this age range, he was texting me message like “How many ceiling fans do you think I saw today?” and “Give me more money or I’ll punch your nose.” In re-reading the facilitated messages, I’m reminded of Invasion of the Body Snatchers: in all three versions, often the first sign that someone is no longer himself are the bland words coming of his mouth. FC or no FC, there’s something creepy going on here (far creepier than my child joke-threatening to punch my nose).

Second, there’s the perfect spelling, prerequisites for which include reading. How did these kids–who generally didn’t start attending regular ed classes until after FC “unlocked” them–learn to read? In the few cases where this question is addressed, we’re told that the child learned to read on his or her own–i.e., without formal instruction. But this is something that very few kids accomplish. Most children (as we see in this country’s ongoing whole-language/balanced literacy-induced reading crisis) require systematic phonics instruction to learn how to read. Many of these FC videos, however, counter this concern with an implicit rebuttal: once the kids are “liberated” by FC, they turn out to be geniuses, ending up in honors classes and gifted programs and headed for college. And, after all, autistic savants are a well-known phenomenon, and hyperlexia (early decoding skills) is common in high functioning autism. Maybe these kids really did crack the English writing code entirely on their own.

Fundamental to reading, however, isn’t just phonics, but language. And language delay–in both oral and written language–is one of the core symptoms of autism. This is true even in autistic kids with hyperlexia: they often don’t actually understand the written language that they decode. How did these nonspeaking kids learn to produce such sophisticated written language–such long, complex, well-formed sentences (typed slowly via an index finger that often wanders for whole seconds over the keyboard between selections); and to use such sophisticated vocabulary, often beyond their years–“indicate”, “initially”, “insidious”, “insinuating”, etc.?

At this point, it’s worth recalling one of the points I made in my earlier posts. Whether we’re talking about oral or written language, how much a child learns is correlated with how extreme their autism is, and, in particular, with how often they engage in Joint Attention behaviors. Many of the children figured here are characterized as highly autistic, and in these videos (some of which include scenes of daily life in addition to scenes of facilitated communication) we see few if any, signs of Joint Attention–-eye contact with parents or facilitators, following of parent/facilitator eye gaze–all of which are supposed to increase as children get older. As I discussed earlier, acquiring the basic vocabulary that jumpstarts language learning especially depends on eye contact and gaze following.

What about more sophisticated vocabulary? Words like”indicate”,”initially”, “insidious”, and “insinuating” are often picked up not through oral language, but from sophisticated written texts. But comprehending those texts depends on a foundation of general language comprehension–which means that it depends ultimately on the kinds of Joint Attention behaviors that are greatly reduced in profound autism. Furthermore, we never witness or hear about the reading habits of these (or other) facilitated kids. The videos never show scenes of (facilitated or unfacilitated) reading.

Beyond their sophisticated syntax and vocabulary, these facilitated messages are impressive in another way. They indicate facility in specific areas of language that tend to be especially impaired in autism: psychological terms and figurative phrases. We see appropriate use of terms like “forget”, “assume”, “ignore”, and “interpret”;  figurative turns of phrase like “wear a puppet string”, “throw people off the intelligence trail”, and “lose themselves in one another’s arms”; and ironic references like “gift of autism.” As I noted earlier, mastery of this sort of language indicates that, assuming you’re on the autism spectrum at all, you’re way far out on the mild end of it.

But again, facilitated messages aside, all indications are that these children are profoundly autistic; that they are not regularly engaging in the types of behaviors necessary for even basic language acquisition.

So these facilitated messages, in addition to whatever they communicate directly, implicitly convey one more thing: yet another reason to suspect that they come not from the children themselves, but from their facilitators. In my next post, we’ll recap all the other reasons for this troubling conclusion–with all its Invasion of the Body Snatchers-like implications.