a parliament of owls

life with asperger's

Tag: asd

What’s in a name? On the loss of Asperger’s.

As many media outlets have reported, in late May 2013, the DSM-V eliminated Asperger’s as a separate diagnosis and merged it with Autism Spectrum Disorders. Most Aspies, as far as I can tell, continue to make a distinction. Wherever I find Aspies talking about this diagnostic restructuring (e.g., in the media or in Wrong Planet forums), they seem to be holding on to a distinct identity they have proudly associated with verbal acuity and high intelligence. They want to distance themselves from the greater perceived dysfunction of Classic Autism. For me, however, there’s no sense of loss. That’s because, despite some apparent behavioral and emerging, neurological fine points (such as those suggested by a recent Boston Children’s Hospital EEG study suggests), I believe that we’re more related than not. The distinction is a question of degree rather than difference.

Both Aspies and Classic Autistics have trouble, for example, with executive functioning. Weak executive functioning takes different forms, giving us difficulty in organizing thought into sequence, sequence into schedule, schedule into action plan. Or, difficulty in big picturing over detailing, detail to the exact degree, to be accurate, true, perfect, right to the idea.

Or, difficulty in coordinating movement, fine or gross, unless we put all of our attention there, and then, it’s finally focused. Bang. Some of us even join the circus–yes, I know a professor whose adult Aspie daughter has trained for and joined a circus, and on the high-wire no less, but that’s another story. And it’s a lot more usual for us to have trouble chewing gum and walking at the same time, anyway. Which is not a joke. I once saw my father, who I suspect is more than a little like me, let the gum fall right out of his mouth when he shifted inwardly to concentrate on walking up an incline at the mall. A gentle incline meant for rubber-tipped walkers and baby strollers. A healthy man in his 40s. Put it another way, we are better at processing geometric stimuli than biological motor stimuli in performing tasks. Go figure.

To wit, both Aspies and Classic Autistics have issues with sensory processing. As a for instance, our brains don’t filter sound well. We hear everything, even minute sounds, and we hear them all at once (again in researchese, we have a biochemically defective signal-to-noise filter — and that same brain mechanism for sensory processing may be related to social functioning). If someone speaks to us through that weave of everything, we have trouble hearing them or concentrating on what they are saying. We’re more likely to hear a conversation on the other side of the room. There’s even some evidence that like Classic Autistics, our brains don’t reward us for feeling a human touch or hearing a human voice. And why would you listen for something that didn’t bring you pleasure on a level so primitive you don’t even have to think about it? Maybe that’s why we sometimes turn entirely inward, unable to hear a thing, even when it’s crashing around us, because we’re in another place, one inaccessible to anyone else. We’ve got that in common, too.

Aspies are often incredibly verbal, and that seems like one big difference between us and Classic Autistics, who have trouble communicating verbally. We talk too much, use too many big words. We monologue rather than dialogue. But, we also stop up when it comes to talking about feelings. When we feel something strongly, our nervous systems overload. Tears well up and fall. Hands shake. Words stutter and fail. There’s a surging feeling inside, blood, electricity, blanking light, and very nearly a ringing in the ears. Sometimes we, too, have meltdowns. Flailing arms, or a panicked rush away, or a repeated verbal push back against the assault, “No, no, no!” The overwhelm requires a response, to force the feelings back down, to keep from drowning on the inside. Or, if not drowned, we are cast out, literally beside ourselves. It’s a terrible, naked place to be, skinned before the world.

The good news is, there’s comfort for all of us in patterns. Patterns of all kinds. Pattern, period. This can be the pattern of a structured environment and an expected schedule. The pattern of interaction with familiar people. For Aspies, familiarity often breeds attachment, just as when the android character Lt. Commander Data on Star Trek: Next Generation, who is supposedly programmed without feeling, describes his form of affection as being “used to” someone. Anyone who we couldn’t get used to we’d keep at a distance, circumstances allowing; those we do allow close have been welcomed on purpose and for reason, even if we don’t look at them, or hug them, or say their name. They don’t rub us raw like the rest of the world. What a strange description of love, you might say. But it’s love just the same.

Then, there are the classic patterns in which we find comfort: a sequence of numbers, an organized image, a piece of music. Repetitions with variation. These are sometimes so comforting and so absorbing that we are disturbed when they are disrupted or when we are unable to follow them through to the finish. Teachers sometimes call our difficulty in leaving a pattern “trouble with transitions.” That does not really capture it. Our head is immersed in a model of our own making. That model might be a collection, a fictional world, a machine, an array of arresting colors. Being asked to transition is more like, in TS Eliot’s turn of phrase, daring to disturb the universe. It’s not the universe outside that is being disturbed; it’s the one we’re building in our heads.

When I First Knew What To Call It: Asperger’s

When my son was in the first grade, his teacher became alarmed. He didn’t seem to be picking up on social cues. He would wander off to do his own thing when the other kids were dutifully lining up. He didn’t understand why he had to wait there when they were going outside anyway. The rocks and bugs were more interesting than the other kids jostling to be first or last. That he was alone on the playground studying the world didn’t bother him a bit. It bothered his teacher a lot.

Her brother had been different like that, she told us, and his life hadn’t ended up as successfully as she and her parents had hoped, given his creativity and intelligence. He was a nomad wandering somewhere in California (from the Midwestern perspective, a wilderness). She didn’t want that for our son. We wondered. So we got him tested. The diagnosis was Asperger’s.

We had difficulty accepting the diagnosis. My husband and I are both intellectuals: artistic, nerdy, odd, introverted, quick. We’ve navigated the world all right, without any diagnosis. We’ve each worked at highly demanding professional positions. We have advanced degrees. We worried that Asperger’s would be a label that would stigmatize our son, following him through school like a bad odor, keeping him from opportunities he deserved, like gifted classes. Kids with Asperger’s, despite their gifts, can be work to manage in a classroom, and the fact is that many teachers who teach gifted students are used to them being well behaved and focused on good performance. Kids with Asperger’s are interested in what interests them, and not in performing for its own sake. They can be excessively talkative, poorly self-organized, inclined to give or receive social cues that are off base, easily frustrated, and go off task as soon as they are the least bit bored. But, as it turned out, the thing that led us to out our son at school wasn’t any of these things. It was his poor handwriting. That’s typical of Aspies, too. We have fine motor and gross motor issues, and his were pronounced. As it turned out, some of our fears about stigma came true, but our hopes that he would find support and nurturance came true as well. Now that he is in middle school, we are glad that we came out at school.

But then, there is me and my own decisions about whether to hide or reveal my Asperger’s. I learned during the process of my son’s being diagnosed that I have Asperger’s too. It had never occurred to anyone before, not even to myself. I fit the criteria to a “t,” all of it. What was so surprising at the time was that each of the different aspects of myself I had assumed were entirely separate, chance developments, functions of experience, or personality, were so comprehensively related and grounded in neurology. These differences were hardwired into my brain. I had trouble accepting that. I didn’t want to feel so determined by the physical. I was a mind riding atop a meat vehicle, one that I and yes, perhaps my culture and experience, had shaped; not a meat vehicle that had manifested a certain type of mind through electrochemical patterning. Eventually, I did accept that I have Aspergers, and that having Aspergers has impacted every relationship I’ve had and every choice I’ve made in my life, the good and the bad. But I wouldn’t change who I am. The way my brain works has given me significant gifts, abilities and pleasures, even if it has cost me. And I am raising my son to see the value in who he is, in who others are, whatever our difference.