Behavior therapy---ABA, behavioral science, however you may call it---is not helping Charlie's behavior problems. In fact, it may have even made them worse.
I'm not taking issue with ABA as a whole. Charlie has been in some sort of school or educational program in which ABA was the main teaching methodology since he was just over 2 years old. Jim and I did our best to learn ABA ourselves and to apply our learning to teach Charlie, whether to ride a bike or to play cello. But it now seems that the very "tight," "state of the art" (as some might say) ABA program in place in our school district has prolonged the "challenging behaviors" --- head-banging, for one---that have dogged Charlie for years. Indeed, it was precisely because Charlie had so many "behavioral challenges" that we stuck with ABA over the years.
Now, though, it seems that we need very much to think outside the ABA box and see it as one teaching methodology, one teaching philosophy, one approach, among others. After over ten years of ABA and, in particular, discrete trial teaching, Charlie is quite wise to the whole business of "breaking down a task into small parts," of using a schedule of reinforcement to increase the frequency of a behavior--hold up a cracker in front of him and talk about "working" for it, and he knows the song and dance that will follow.
While we await the observations of a Ph.D.-level BCBA who our school district is supposed to behave complete a Functional Behavioral Assessment on Charlie (finally---this should have been done last spring when things got to the point that Charlie's teacher brought up Bancroft, if not even earlier), Jim and I have increasingly felt our heads knocking on the walls of that ABA box when we're told that the "functions of Charlie's behavior" are attention, escape, access to tangibles, communication, "automatic reinforcement" (i.e., sensory needs), "other." Our school district did what they call can "informal FBA" (not so sure such a thing exists outside our school district) and, despite repeated requests, just says that "classroom staff" completed this "informal FBA" and has (dodgily) not provided names of credentials of the "staff." In keeping with its "informality," that "informal FBA" (which the school district did without asking for our consent) ended up concluded that there were multiple factors controlling Charlie's behaviors. A conclusion which seems rather to state the obvious.
"State of the art" ABA having seen fit to "manage" Charlie's "behaviors" with the less than artful, and quite forceful, methods of a helmet and physical restraints, it indeed seems that ways of helping him need be sought elsewhere. Jim and I were able to reduce head-banging and all sorts of what gets called "challenging behaviors" last summer by keeping two rather vague principles in mind:
•Attentiveness to Charlie’s struggle and desire to communicate, and the ways in which what he says is not always what people assume is meant. •Awareness of how tuned in Charlie is to other people’s feelings and especially picks up on anger, excitement, fear, worry, and conflict.In particular, the notion of putting some "behaviors" on "extinction" by "ignoring" them has quite gone out the window. For instance, as noted, Charlie says a fair amount of words that seem out of context. They're considered "non-contextual" utterances and are not responded to by the staff in his classroom who instead "give him words"---phrases that have been deemed "appropriate"---to say. While this strategy does acknowledge Charlie's desire to communicate, it overlooks his own efforts to use whatever means he can do communication and imposes what someone else thinks "appropriate" on him. Of course it's important (necessary) for him to learn to communicate in ways that many people understand, but some vital mistake is being made when his own efforts to communicate are pushed aside.
Further, "breaking down" tasks into steps discrete-trial style or teaching something through "backward chaining" (in which a skill such as shoe-tying is taught by teaching the last step first) no longer seem to be so effective in teaching Charlie. He's a careful watcher of the world around him and can see that many (most) people don't have tasks "broken down" for them, and learns things in a sequence of first step first. Indeed, we've noted that Charlie is very interested in the process in which things are done: Like anyone, he's learning to bake brownies not by first learning to take the pan out of the oven, but by getting out the bowl and the ingredients.
And, in answer to the million-dollar question: Okay, so how do you handle "challenging behaviors" if not through behavioral methods?
This isn't the total answer and I'm working on putting together something more complete as I write up some things for Charlie's new teacher. But what has been working, and worked on Sunday afternoon when Charlie woke up from a two-hour nap (he'd woke at 6.15am, gone on a 9-mile bike ride with Jim on which some barking dogs rattled Charlie) and cried out "Barney video," a telltale sign of "I feel frazzled and I feel something brewing in me"---that was the last thing he said last Monday before a huge neurological storm overcame him---what has been helping has been to acknowledge and validate Charlie for feeling what he feels. (Who doesn't appreciate it when their feelings are acknowledged and understood by others?) And then (and I know this sounds New Age-y and Zen-ish; so be it), to project a sense (okay, a vibe, an aura) of peacefulness and to let go of any tenseness, worry, anxiety we may feel rising in ourselves as we worry about "what Charlie might do." I guess you could say, we try to communicate to him, mostly non-verbally, that we know how he feels and we're confident he can manage.
He did Sunday blinking and shaking and rubbing his head on the couch and whatever had been worrying him passed.
(It was a lovely Sunday, and a lovely weekend, too---in contrast to last week's---by the way.)