As the swan expanded his size, TH emitted his unique squeaky squeal, threw up his hands, flapped vigorously, and somehow by doing so bemused the swan so much that the beautiful white waterfowl immediately shrank back to his normal appearance and settled himself. Perhaps he thought TH was also a large bird and felt better about the whole thing. But there was no question about what the flapping had something very very autistic about it.
Today, the Psychological Powers That Be have announced that TH's autism will officially no longer be called Asperger's. Based on arguments grounded in the scientific literature, they have concluded that the Asperger's diagnosis be subsumed into one long, rolling spectrum of autism.
On the one hand, it makes total sense to me. Some days, some moments, TH is one of those "high-functioning" autistic people you hear about, the ones who navigate the world with an apparent near-typical ability. Of course, the reality is that they've probably intellectualized the navigational charts and struggle and expend far more energy on mapping those paths than neurotypical people do. I can completely sympathize with this struggle, as I experience a similar expenditure to the point of exhaustion when I'm around people.
And at other moments, especially when TH really cuts loose with the self-reg behaviors--flapping, rocking, squealing, echolaling--he fits what some people would think of as a more "classic" autism. He does these things at home a lot, and they seem to signal supreme happiness. But he also does them in public in a way that signals something different: anxiety, trepidation, abject fear in some cases. Only three days ago, I had him with me while getting my hair cut. As I was checking out, TH carefully approached me, and the stylist noted the dinosaur book he clutched in his hand. "Is that a good book?" she asked. Suddenly, he was gone, having dived underneath a chair at one of the stations. He's large, the chair was small, and it did little to conceal him. I retrieved him and had him answer the question.
On the other hand, I'm gonna sort of miss the term. It's a quick shorthand with doctors and other relevant folk to let them know that TH can understand what they say and talk to them in a relatively functional way, but that he's also autistic. But TH won't miss it at all, although he's clearly gotten more comfortable saying it lately, trying it out as a rationale for some of his behaviors. "Oh, that's because I have Asperger's," he'll say. And I'll say, "Well, too bad. You still have to respond appropriately when someone asks you if the book you're holding is a good book." I have a zippy Irish temper, but that doesn't mean I get to go around unleashing it on unsuspecting strangers with impunity. (Took me awhile to fully incorporate that lesson, but there you go. We all have our learning curves).
In the aggregate, it makes sense. I've seen kids whose autism is deeper in most ways than TH's, yet they share many behaviors in common, many issues that match perfectly. TH's social deficits and extraordinary social anxiety may likely be the most difficult aspects of his autism, and they're problems he needs to conquer or at least control at appropriate moments, step by step. In fact, I plan on watching the Temple Grandin biopic with him so he can see what real bravery means. His attachment to schedules and home and his powerful reaction to even the smallest changes also will require a bit of conquering, some effort at greater flexibility so that he can navigate life with a bit of resilience. I hope.
We as his parents are lucky--and I know it--that he no longer has epic meltdowns that have no identifiable (to us) trigger, that he can now communicate with only the occasional interpolation of an explosive non-sequitur, that he can read, write (sort of), calculate. That he sleeps (almost) through the night. I know the struggles of other parents are far far worse, that the struggles of other autistic adults and children are far heavier burdens. And where TH is now may change for him, one way or the other, as he gets older.
But no matter what his age, he will be autistic. The swan experienced a true manifestation of that. And now, the new Diagnostic and Statistical Manual apparently will agree.
