a parliament of owls

life with asperger's

Category: Coming Out

So You Say You’re Autistic

So you say you’re autistic, or have Asperger’s, or whatever. Well… You don’t look autistic. You look just like anyone else. You make eye contact. Plus, you seem to be able to hold up your end of a conversation. There doesn’t seem to be anything wrong with you, as far as I can tell. I mean, true autistics can’t talk. They hit themselves. If that’s autistic, you aren’t autistic.

Okay, okay, maybe you’re autistic in some way, but how autistic can you be, really? And what do you want me to do with that?

I mean, let’s say I accept that you’re autistic. Does that mean you expect special treatment? Like what? Am I supposed to ignore every time you’re rude to me or embarrass me in public? What about when you’re late all the time? You knew when we were supposed to be there at Y:00, but it’s like you just don’t care. You get involved in doing something on the computer and next thing I know you’ve lost all track of what you’re supposed to be doing. You’re an adult for Christ’s sake. You can get places on time.

And it’s like, you have no awareness of when you’ve driven a topic into the ground. You go on and on about X in the most excruciating detail. I mean, you don’t even realize I stopped listening 20 minutes ago. Or that other thing you do. You switch topics right in the middle of a conversation. No warning, no context, nothing. And then even if I am listening, I have no idea what you are talking about.

Yes, a car alarm just went off outside. Calm down. It’s not like the house is on fire. Stop that. Stop covering your ears. You look ridiculous. It’s just a car alarm. I don’t like that sound either, but you don’t see me covering my ears.

Back to what I was saying. Look, you have to get used to going out and talking to people. Real people, not people online. Yes, I know that takes a lot of energy for you. Not everyone’s social, but it’s important to be social, you know? You need to learn how to interact with other people and get along with them. Sure, they ignore you sometimes or act like you’re weird. I mean, you’re a little different, okay? I’m not going to lie, but so what? Everyone’s different.

Don’t try changing the topic. No, I don’t smell anything. I already took the garbage out; I told you I did. No, I did not wash out the can. I’m not going to wash it every time I take it out — nobody does that. That’s why it has a lid. Then turn the fan on. Point it away from your face if you don’t like the air hitting your face.

For crying out loud, have you ever tried living with yourself?

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Gender Dysphoria and Bodily Estrangement

A small study based in a gender dysphoria clinic has just found that “almost a quarter of kids with gender dysphoria” are “likely to have Asperger’s.” At least one other study has found that people with Aspergers have higher than baseline rates of the same. Few people who are wired conventionally are aware of how much that wiring affects a basic sense of self, such as one’s relationship to the body. For me, the body is an alien entity, a vehicle that carries my consciousness even as it synthesizes and synergizes its production. Without a neurologically based rewards system for social thinking or feeling, I also have no additional inclination to conform to received views about the body or how I should relate to it. Therefore, my sense of gender and sexuality is based on my partially independently formed concept of these rather than the vehicle or what I’ve taken in about it from others directly or via media.

From a very early age, I did not identify as female, and I often feel a negative response to social conventions that attempt to identify me as one (such as the label “Mrs” or being called a “mother,” when I am only my son’s mother and my marital state does not define me any more than it does a “Mr.”). I am also equally attracted to males and females and have been for as long as I can remember. But physical touch, presence, and relations are unimportant to me, and in some ways undesirable unless I already have significant emotional intimacy with the other person. I find that other Aspies vary to the degree to which they would say the same, but there’s a tendency toward all of this in us that I believe is shared.

I remember with what joy of recognition I responded to a question on one of the extensive diagnostic inventories I took during my medical diagnosis for autism. It asked something about whether I was sometimes uncomfortable with having arms because I didn’t know how to position them or what to do with them. I had never told that to anyone and couldn’t believe anyone could imagine the same enough to ask another if that were the case.

One artist who does express this sense of bodily estrangement is David Byrne, also a self-described Aspie. If you are interested in this, read his lyrics to “Glass, Concrete, and Stone.” Here’s a taste:

Skin that covers me from head to toe
Except a couple tiny holes and openings
Where the city’s blowin’ in and out
And this is what it’s all about, delightfully

Everything’s possible when you’re an animal
Not inconceivable, how things can change, I know

‪#‎aspergers‬ ‪#‎autism‬ ‪#‎genderdysphoria‬

The Asperger’s Closet: On Coming Out

My brother chose the night of my high school graduation to come out to our father, who had raised us after the divorce. I was the younger child, and the black sheep to my brother’s shining sun; the day had finally been about me. After the speeches (I’d given one), and the interminable procession, we’d be allowed to go out for Mexican, which counted as exotic fare in our small town as late as the summer of ’84, something my father usually wouldn’t tolerate (the food along with the people). We’d come home and were having one of our long “family talks” around the dining room table, the kind where my father ranted for hours, full of black Irish emotion and passionate philosophy, weaving the story of his life with ours, or his version of it.

We can tell each other anything, he said. We share our truths. I wasn’t sharing mine, not any of them. I was sitting quietly listening, enmeshed in the family dynamic that was built more on myth than fact. Into this fiction my brother intruded his truth, that he is gay, that he had always been gay, that he had been experimenting while away that year at college. He was ready to own it. I had known since we hit puberty, and I was glad, relieved, that he had decided to come out. Coming out is never easy. But his timing was terrible. My night of celebration turned into a trauma.

My father’s agony was real. One of his two adult best friends, my Uncle Dick, was a gay man who had been murdered in a hate crime years before–well, pulled from his car after his windshield had been hit with a brick and assaulted until he fell into a coma; he later died of his injuries. They had never spoken of Uncle Dick’s same-sex attraction, and, my father said, that had made their friendship possible. With this unwelcome truth out now between my father and his son, something unspeakable had been said. Something that wasn’t shared even between men like brothers, certainly not between father and son. It doomed his son to death. It put an insurmountable barrier between them. On every level, it literally and without exaggeration terrified him.

Therefore, on the night of my high school graduation, my father somehow found the God he had rejected so that he could punish my brother with Him. In the years that came after, they continued to struggle. My brother argued that my father should accept him completely, and my father argued that he never would. He could love my brother, but not that part of him. He knew my brother, but could never know all of him. At their closest moment during those after years, my father even helped to move my brother and his lover (an Army nurse) into their new place out of state. But there was always something gone wrong at bottom, and the uneasy truce wasn’t bound to last. During that move, they got into a terrible fight over something incidental, like who was unpacking slower or driving too fast to follow. Conclusion was, my father raced home afraid my brother was going to use the spare key to our childhood home to get into the house to kill him. He changed the locks. They haven’t spoken again. Not as far as I know; I’m not speaking to either of them.

My coming out has been different and much less traumatic than my brother’s, but it, too, carries a gift and a price. I’m not talking about coming out with an alternative sexuality, but with an alternative identity just the same: disclosing to people that I have Asperger’s, or high functioning autism, or asd.

If I were a gay man, people would be inclined to believe me when I told them so. With Asperger’s, a common reaction is skepticism. The person I’m telling has a relative or a friend of theirs has a relative who is a classic autistic. I don’t fit that stereotype. I’m verbal and don’t sit on the floor rocking (although if I stand long enough a rotate, or swing my torso, from side to side–something we call stimming). Or, they think of the socially incapable uber-nerd who is male, but here I am, a woman. I seem to have social graces (seeming is believing). I can make eye contact (admittedly, too much). I can make small talk (not often or for long). Or, they just flat out believe that Aspies are unicorns, invented out of some bizarre inclination toward wish fulfillment, maybe a desire to be special, to find a label for introversion or eccentricity that has a certain clinical ring to it, as if by making such a claim virgins will want to ride us and the forest of twilit dreams will be ours and ours alone to roam.

Sometimes, when people do believe, even then they might express that it’s not a big deal. They’ve got friends who are geeky-nerdy- introverted-techy-socially awkward-brainy people–maybe even on the shy side. I’m not shy, I tell them. I’m not reticent. I’m what they call “active but odd.” Hang around me long enough, or do away with one of the many interactive scripts I’ve learned to run, and prepare to be — well, it depends on your tastes and maybe my mood. Charmed. Stumped. Annoyed. Amused. Uncomfortable. There’s a range of reaction depending on our chemistry. And it’s not that I enjoy rejection or that I’m impervious to it, but I care much less about it than a socially normative person might. I’ve got rigidities. Obsessions and collections (a hoard in the skull). Sensitivities to stimuli. Imagine a cat with its back up, making that Halloween cat face of alarm. I’ve got one of those inside my nervous system, ready to jerk upright just behind my face at any given moment. It happened today in a meeting, when someone dropped something with a crash. I jump and grimace. Twitching. I have to concentrate to resettle. Literally, the surface of my skin stings all over, arms, legs, chest.

I’m different, and finally someone sees. One day, not long ago, a woman at my new job was teasing me. She’d found me sitting alone in a meeting room, waiting for the thing to begin. I always try to be on time, or a little before, and I do it even in a place where people have a culture of running a little late. They’ve told me they run late there. But it doesn’t matter to me. I have developed an internal standard that punctuality is polite, and therefore I do it regardless of others’ social expectations. So she is teasing me, saying that I must be so lonely, so very lonely, sitting there all alone in my aloneness. Party of one. Loner. I’m reminded of that scene in the Steven Martin movie (The Lonely Guy) where he sits down in a restaurant to eat alone, feels self-conscious, and the universe fantastically manifests his self-consciousness as a spotlight shining down only on him. But I am not lonely. I don’t care that I am the only one in the room. I have plenty to think about, and I often bring something to read, anyway, just in case I run out of interesting thoughts. I tell her, to stop her from interrupting my thoughts and for Gods’ sake emoting at me in that too loud, cheerful-neighbor-over-the-fence voice, that I am not at all lonely, and that I don’t get lonely, not in the way she means. I don’t generally long for other people. I only ever miss particular other people, and then sometimes, not always. There was something in the way I asserted this that made her pause. She understood, I could tell, that there was something new in the room with her, something she wasn’t used to encountering in the daily course of her life.

Glimpses like that into another person’s awareness of my difference are validating. Not because I want to be different, but because I am different from most people. I can’t help but be keenly aware of this in my every interaction with strangers or people of limited acquaintance. It doesn’t make me an object of pity to myself. I am not a victim. I am not necessarily Aspie proud, either. It is what I am; it’s not something I’ve achieved. The moment when I move from self-awareness to advocacy is the moment when I sense someone has recognized my difference and rejected it. That someone might not realize he or she is rejecting Asperger’s. It’s akin to a conventional heterosexual finding an effeminate man or masculine woman distasteful. I seem like something they recognize, except there’s something else about me that’s too remote, or blunt, or analytical, or serious, or intense. I’m staring at nothing with an unfocused gaze, or my interest in manifesting fake cheer has dwindled (all too easily and often). Then that someone recognizes a distasteful difference, without getting all the way to giving it a label. And if I gave that kind of person a label to explain it, would that render me more palatable to them? Or would they believe instead that there is some kind of medication that could help me to conform or therapy that could fix me?

It wasn’t that long ago that a woman to whom I’d revealed my Asperger’s made that very suggestion, that there must be some kind of therapy. Yes, Aspies sometimes benefit from social skills training or motor skills development or cognitive behavioral therapy for anxiety. Some of us take medication to help with anxiety or depression. But the fact is, we’re born this way–whether others believe us, accept us, or reject us. Baby, as Lady Gaga would say, we’re born this way. We’re freaks and geeks.

Just as with my brother’s experience in coming out, however, the most important reaction to difference is one’s own. It has taken me years to understand myself as someone with Asperger’s, to accept that Asperger’s is a form of autism, and even to acknowledge that this may put me at a disadvantage in certain contexts, despite my intelligence, ability, and confidence. And lately, I’ve been coming to a different place still.

These days, my Asperger’s is seeming less like private information, something I can only confess about my son in order to help him gain support services at school. We have a lot of positive talk in our home about what it means to be Aspie; we’ve come to admire the gifts, laugh at the quirks, and shrug at the deficits. So maybe there is some real value in coming out–not as much to the neurotypical world in the hope that we’ll eventually gain understanding and acceptance, although that’s something to shoot for, but so that we can embrace one another and come to a greater understanding and acceptance of ourselves.

This, then, becomes the foundation on which we stand to face the world.

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.