One in eighty-eight? Really? That’s where the statistics place autism now? Wasn’t it 1 in 150 a few years ago?
I know that part of that number is based on the wide-swath spectrum we’re talking about here. I know that part of that number is the result of overzealous diagnosis. But, still, it’s a staggering number, isn’t it? I’ve seen a panic form in newspaper and news website headlines for stomach bugs and flu strains with similar numbers. The medical expenses for a person in the spectrum can be staggeringly more significant than those for a person who isn’t. Don’t we all know it, huh?
At this rate, autism will soon be shrugged off (wait, isn’t it ALREADY shrugged off?) by some as a figment of our overactive parental imaginations, a crutch on which we lean to explain away our poor parenting skills. Like the common cold, if you utter a single complaint about the vicissitudes of living with autism, people will roll their eyes and say “it’s ONLY autism, for crying out loud! Take a pill and get over yourself!”
I read that number this morning and I had two reactions: the first was an expletive-laced WOW, and the second was “well, J doesn’t count in that particular statistic anymore because they’re only counting children to the age of 17.” What does THAT mean?
I googled it. What I found was a string of statements regarding employment for autistic adults that echo this one from The National Autism Resource and Information Center website: There is no good source for this number for adults with autism spectrum disorders. J is a non-statistic. J is a factor in a, generally, uncounted sector of the population. From being 1 in 88 a few weeks ago, J has gone to being 1 in 4…as in one person in this family of four who has autism.
Clearly, we have more work to do. Here we are, past the midpoint in the month of February, and we have looming ahead the extraction of a diseased tooth, a guardianship hearing, a general check-up at the doctor’s office, and the as-yet-unresolved issue of his Social Security benefits. J deals with the direct stress caused by his toothache, and we’re fine with that because that’s a lot to handle. The rest remains up in the air, jugglers that we are, until -one by one- things are resolved and taken out of the rotation.
The toothache has receded into nothingness thanks to the antibiotic that has made the raging infection peter out. J is back to his usual self, and everyone is sleeping a little better. I still jolt awake from time to time, but that’s the every-two-hours instinct that we all develop when they’re babies. J is submitting to being given antibiotics with as much dignity as he can muster before loudly announcing the pink stuff tastes like BLEH! He wants us around a little more than usual, gets a little anxious when we leave him alone for more than ten minutes at a stretch. I wouldn’t want to humor him under other circumstances, but I know that Friday morning was pretty traumatic for him. I negotiate furloughs to do other chores, and pop into the room to say HELLO when I hear him starting to stir from his comfortable mood into his “why am I alone?” mood. There’s been a lot of hand-shaking going on, mainly because he wants to prove that his 2 a.m. tantrum was the result of unbearable pain, and any harm that befell us in the process was not intended as punishment.
J’s humility in the midst of his anxiety (which is now reflected in this desire to not be alone…maybe he thinks it’s our presence that keeps the pain at bay? I don’t know) is most clearly illustrated by his current relationship with his good ol’, trusted friend Slinky. At one point during the dental resident’s exam on Friday, J slung Slinky with such force that one of its coils got seriously bent, and Slinky (usually perfectly coiled or discarded) lost its shape forever. This is not just the lassitude resulting from an excessive stretching of Slinky’s coils; this is a marked kink on an otherwise perfectly coiled Slinky. A human would, under the circumstances, be considered scarred for life; Slinky is no longer Slinky, but rather the Igor version of Slinky, a hunchbacked thing that J would have protested and tossed mere weeks ago.
I think, perhaps, J realizes that his tantrum (although justified) was an ordeal for everyone, and he accepts Slinky as-is, kinked, bent, marred, simply because they’ve been through a lot together. I think that’s the same reason the boxing gloves -beaten, battered, but no longer necessary- remain on his bed as bodyguards surrounding Raggedy Ann, Minnie Mouse and Daisy Duck. One of his hats has a gaping hole that I might or might not be able to fix, but he keeps that, too. He lets me hold it long enough to do a quick inspection of the damage, but he doesn’t let me mess with it otherwise. They, too, have been through a lot together.
Does J know that his “cute” factor has been canceled by adulthood? Is he aware that we are jumping through numerous hoops with as much alacrity and agility as we can muster just to help him? I think he knows; I think he is aware that something is in the air that signifies change or a shifting of the picture. I think he can “read” us and “recognize” us. Now that he doesn’t fall into the 1 in 88 statistic, and he counts as The One here, with us, at home, J seems to be letting go of some things while trying to understand others.
I think he “gets” us now, and he sees what we do. Like Slinky, the hat, the boxing gloves, we have holes and bends and rips. We instinctively and suddenly react to his instinctive and sudden reactions. The autism here is an everyday thing, unsurprising even when it boggles our minds. He’s safe and known; he’s not a number; he’s J. And we have been through a lot together.