We've had a rough few days with Simon. He hasn't been agreeable to much of anything. Even going out, which is where he used to shine in terms of behavior, has been pretty terrible. Part of it was the constant hitting, which isn't out of desire to hurt, but more of the sensory issue he has. But combine that with a steady stream of defiance and screaming at us, and you can imagine how spent we are in trying to deal with him.
Today we got back from a short Epcot run that we took because he asked. It was 72 and sunny, and with him (and Diana) being sick for weeks, we weren't going to squander it. He randomly wanted to do the Piggy Bank Adventure (how he remembers stuff like that is beyond me), so whatever, we didn't have any better ideas. He was actually very happy and pleasant doing this, but virtually everything else led to whining, defiance and other assorted ugly behaviors.
He yelled at us the whole way home, as if he was a different child. The meltdown continued all the way home, and in the battle to get him to take a nap, I actually waited it out in bed with him until he calmed down and exhaustion finally got the best of him. To my surprise, maybe blocking out the angry little voice that wasn't getting his way, I had an epiphany about what was going on with him. Much of what we've been battling has been his increasing struggle with being flexible.
He doesn't eat what we give him because it's not something from the routine. He gets angry when we don't respond to him interrupting because he said "excuse me," and that's the way he learned to get our attention. He flips out about going to lunch in a different place because it deviates from the routine. Ditto for getting "his" table. A toy that doesn't stay assembled causes grief because it's supposed to work as designed. An online game that has a bug causes stress because it isn't working as it should.
These all sound like issues of him not getting his way, right? Well yeah, in a neurotypical way, that's exactly what it would be. But an ASD brain observes an arrangement and its outcome, and gets frustrated when that outcome is different. Inflexibility is one of the most common attributes of kids in the autism spectrum, so the typical parental response can be largely ineffective. The typical kid will test boundaries and look for ways to manipulate authority in order to get what he or she wants. The ASD kid isn't interested in that process at all, only that input A results in output B.
This is why the usual response isn't working at all for us. Mind you, we haven't been nearly as consistent as we should be, but simply taking away an object or privilege does not motivate him to change the behavior. His inflexibility disregards consequence because A gets to B, and those are the rules. The consequences we offer in some ways only serve to complicate the situation. The worst part of this is that the real world operates that way whether he likes it or not, so we have little choice but to essentially make him (and us) miserable.
I think this is the biggest thing we're struggling with right now, because we don't have a good therapist. I have been reading tonight about something called "differential reinforcement variability," which is an approach that essentially introduces change to routine in small bits, and is often augmented with visual schedules and other techniques we know about. Certainly we're not the first to encounter this, and I'm sure we won't be the last.