AAC Again: Beyond Words

Magnetic stimulation is to be combined with behavior therapy in an NIH-funded four-year clinical trial. It's reported that a pilot study "found that patients with autism 'have fewer tantrums and repetitive behaviors symptomatic of sensory overload after a low-frequency magnetic field is pulsed around their brains through a coil placed near the scalp.'" According to Dr. Manual Casanova, the research is "exciting because it involves no drugs and virtually no side effects" (from WKJK).

I'm curious about "sensory overload" being mentioned: This is something that has definitely been the case with my son, and more and more as he has gotten older. Sounds, words, language, the human voice: Charlie seems especially over-attuned to these. He's been plugging his fingers in his ears and I just ordered noise-cancelling headphones (the kind you wear when mowing a lawn-----the sound of lawnmowers definitely bothers him, so I guess these could help). (And they were not expensive stuff.)

While I continue my investigations into/debate over/preparations for starting Charlie on an augmentative communication device (have you signed this pledge?), it occurs to me that I've been forgetting one thing.

Charlie does communicate. Not always with words, it's true. I know that we need to focus on words or some sort of communication that would be readily understood by anyone; it would not do Charlie any good ultimately only to speak a sort of idiolect that only Jim and I kind of understand. On the other hand, all while we're teaching him to talk, he still has plenty that he needs to let us know.

And sometimes, you know, the mountain has to go to Mohammed.

In other words, Jim and I are constantly striving to learn to understand what Charlie is telling us in ways other than with words.

We long ago realized that Charlie singing certain songs provided a clue about what he was thinking (for awhile, "Frère Jacques" meant distress and agitation). Also, some of the words that Charlie uses don't mean what they seem to, but rather say something else: He used to say "sushi" when he was really upset not because he was necessarily hungry. We divined that talking about things he liked comforted Charlie (he often says "Barney" and "GongGong" [=maternal grandfather in Cantonese] for the same reasons).

Charlie leaves us plenty of signs of what's on his mind and of how he sees the world, like the arrangement----"four utensils with plates and containers"---illustrating this post. Once we went around moving the blocks and shoes he'd lined up. Today, we ask him if it's ok if we do and, when the arrangements are more studied (if that's the right word), we leave them be. I'd have to check my journal (I write down what we and Charlie do every night; have since he was a baby) to be sure, but I am getting the hunch that he makes more arrangements, and is more easy-going about them, when he's feeling in sync with things.

Words can really get in the way. I was reminded of this yesterday when trying to explain to Charlie why, even though he'd just swam at the pool, it was too early to get dinner and, in particular, his latest favorite Chinese take-out item, chicken chow fun. A few years ago, we realized that telling Charlie "no, we can't get X right now" or (trying to keep it simple) "no X" was very confusing to him. He heard and understood "no" but he still also heard and understood "X" and he wasn't sure whether he was going to get it or not, and unhappiness ensued. I've since learned, best not to mention X when Charlie's not going to get it and talk instead (if at all) about what is going to happen.

Figuring this out occurred after a great deal of trial and even more error. Teaching Charlie to talk has meant understanding how Charlie uses words and how he thinks, and that's something best (only) learned from lotsa (quiet) time together.