July 27, 2011
A reader named Mat had a couple of questions for me in the comment section of a recent post.
“I have been toying with the idea of a blog, to think about the things going on in my life, good and bad,” he wrote. “What has blogging brought you, what are you hoping to get from it? Do you tell people about your blog, or have your tens and tens of followers come across by accident?”
You’ll be shocked by this, but my answer got a little too long-winded for the comments section.
Awesometism wasn’t exactly born of altruism. I wanted attention and was indulging the occasional wild book deal fantasy, so I went and got myself a blog.
My original, self-serving mission hasn’t been much of a success. Awesometism gets me a little bit of attention, but the hits so far have been respectable but modest. I shamelessly whore my latest posts on facebook and twitter, and I’ve managed to lure a few people over with those mad social media skills, but they probably only account for a small percentage of my readership. Some readers find me by accident. Some readers are my mom.
I imagine that a scientific breakdown of my readership might look something like this:
15% friends who click on my links on facebook and twitter
20% Toronto Star readers who followed link over here and stuck around
20% people who googled a line from NBC’s Community that I once quoted
5% Mom and Dad
30% people who google some variance of “how to seduce an Aspie”
And I love each and every one of you. You’re not a fairy god agent, but you’ve been part of a rewarding experience none the less.
In my real life, this little sucker has proven itself a far more valuable communication tool than I could have imagined. It’s helped a lot of people to understand me in a different way. Even my mom says that she’s learned a significant amount about what’s actually happening in my head from reading it.
I’m also starting to hear from readers whom I’ve never met, who have discovered me through various means, and seem to appreciate what I’m doing here, which is really exciting.
I’ve amused some, touched others, and even infuriated a few, and I’ve appreciated all of those responses. They’ve all helped to sharpen my skills, make me reconsider how I present things and, most importantly, made me continue to write. It’s so much easier to work on a new post when you know you’re not sending it off into a complete void.
Blogging, in general, is an extremely AS-friendly form of communication. It’s basically living in your head (and most of us have probably been told that we live there at one point or another) for public consumption. I was pretty active on livejournal through my late teens and early twenties, and that experience had an extremely positive influence on both my writing and social evolution. I was able to process things at my own pace, formulate my ideas in a medium that was comfortable for me and then send them off into the world. If people commented on my posts, then I’d also get a chance to practice working through my ideas in a more dialogue-oriented, give-and-take format while still in the comfort of my own timetable and comfort zone. That early flirtation with blogging helped make me the semi-functional social caterpillar that I am today.
I also believe that blogging is valuable for the autism community as a whole. What better way to reinforce the saying “If you’ve met one person with autism, you’ve met one person with autism” than to add another voice to the different and divergent mix of people on the spectrum who are letting the world know about their unique experiences, struggles and triumphs? I truly believe that the best treatment for autism is understanding and communication, and the more that we expose each other, both on and off the spectrum, to the greater whole of the autism experience– opinions we endorse, opinions we disagree with, stories that could be ripped from our own lives and lives we couldn’t even have imagined – the more we can all learn to to find common, more comfortable ground and begin to exist with each other with a little more compassion.
And, if you’re really lucky, you could always end up with tens and tens of followers and unfulfilled book deal fantasies just like me.
July 26, 2011
A disproportionate number of people have stumbled across this blog by googling that phrase as of late.
I know that autism can present in all sorts of weird and wonderful ways, that no two of us are alike, and that it’s certainly possible that she could have AS in the way that it’s possible anyone might. But am I missing something? She strikes me as the least likely celebrity to be suspected of Asperger’s.
July 24, 2011
There’s an enormous chasm between people who have never suffered from a mental illness and those who have. For the unafflicted, it’s incredibly hard to comprehend, and for those of us on the other side, it’s almost impossible to explain.
I can tell you that I suffer from depression. I can say that, every day, I wage a war against my own mind in an effort to keep myself functional on a good day and alive on a bad one. I can try to describe the feeling that always lingers in the back of my brain that tells me that I’m worthless, and admit that it is, all too often, stronger than the rest of me, stronger than my tireless therapist, stronger than the love of all of my family and friends combined. But if you haven’t been there, or somewhere similar, you can’t truly feel the unbearable, relentless weight of it.
If you have no history of mental illness, it’s probably pretty easy to dismiss the death of a twenty-seven year old addict whose biggest hit was a flippant “no no no” to treatment. She had talent and riches and adoring fans. She had every possible resource available to her, but she continuously refused help. Clearly, she was carelessly throwing away her gifts and her life.
I didn’t know her, and I wasn’t in her head. But I can almost guarantee you that it wasn’t that simple.
The dismissive comments I’ve been reading on the internet about Amy Winehouse are getting to me. It saddens me that so many people think that a woman with her problems was entirely unworthy of sympathy and that she deserved what they consider an obvious and inevitable fate.
But what really breaks my heart is that that little girl up there would probably have agreed with them.
July 21, 2011
I did eventually read the first two books in Frank Herbert’s original series (Dune and Dune Messiah) and found them interesting enough, but I probably will never get around to the rest. I might go back and read the first one, but everything after that breaks my heart. I can’t take anything bad happening to Alia or Paul; they mean too much to my childhood. It would be like Mr. Dressup going crazy and being controlled by a floating man with pimples, or The Friendly Giant going blind and wandering out into the desert to die. And I still can’t abide the giant man-faced phallic symbol with a phantom weenie.
The internet came along and turned everyone with even a passing interest in any kind of pop culture into a six-year-old with Asperger’s, so there’s really no shame to be had in being obsessed with something and talking about it nonstop these days. Or at least it’s easier to find people who will appreciate and condone that behaviour.
Oh, and those who carried the name of concubines? Well, I hear that history called them wives.
July 20, 2011
My husband, A, finished reading God Emperor of Dune, the fourth book in the original series, for the millionth time while we were away. So I spent a disproportionate amount of our vacation staring at the cover, a lurid display full of gaudy reds and orange swirls that wouldn’t be out of place in a velvet painting, topped with a bunch of little guys in white one-pieces similar to the spandex suits worn by the nihilists in The Big Lebowski, and a giant, black worm with a tortured and bloody-looking dude’s head carved out of the top, sort of like the most terrifying watermelon sculpture possible.
“So, he really turns into a sandworm?” I kept asking, like my repetitive interrogation would somehow make all of that nonsense disappear.
“Yes. Leto Atreides, Paul’s son, becomes a sandworm,” he would answer with remarkable patience.
“Because [insert incredibly detailed spiel about some kind of future vision that made Leto realize that he needed to make the ultimate sacrifice and turn into a sandworm to govern Arrakis for the next few hundred years that I was only half listening to].”
“She’s dead. This is hundreds of years in the future.”
“So, it’s just a whole book about a sandworm?”
“Well, he has a legion of feisty warrior women who run the planet with him.”
“How does he talk to them?”
“He still has a human head. [insert explanation about Leto’s slow metamorphosis and how he thinks that his human head will disappear and then he’ll go off into the desert and die because I’m pretty sure that’s the Atreides solution to everything].”
“This book is dumb.”
I picked up the weighty tome a few times when he was done with it, scanning the occasional page to get some sense of this clearly drug-fueled orgy of overly serious thoughts about worms and sand, but all I came up with was a passage in which Leto explains to the seven millionth incarnation of Duncan Idaho that he still feels his genitals, even though they’ve been gone for centuries.
And I guess it’s an, um… admirable thing that someone in the history of the human race has taken some time to ponder the internal and external life of human/sandworm hybrids and whether or not they’d have phantom genital syndrome, but I just don’t have any patience for that kind of thing. That’s just not my Dune.
My Dune was David Lynch’s Dune. Well, at least partially so. You see, my thing with Dune was particularly narrow in its focus, even for an Asperger’s special interest.
My Dune, as understood and explained by my six-year-old self, was as follows:
There’s this planet with sand and spice and the people eat the spice and they get blue eyes. And there’s this orange thing floating in space because it ate too much spice. And there’s this guy, and the scary woman makes him stick his hand in a box and it really hurts but he can’t take his hand out or he dies but he doesn’t take his hand out and that’s a good thing. And then the guy is on the planet and he knows how to put the special desert suit on even though no one ever showed him! And there’s a little girl who’s really scary and smart and a fat guy with pimples who floats.
For some reason, the suit part was the most important part. To my younger self, Dune was basically a movie about Captain Picard being really impressed by the way that Agent Cooper wore a skintight suit.
As far as special interests go, Dune was not exactly a great love affair. It didn’t last for years on end. I never dragged my parents to lectures by Frank Herbert. I was too young to really attempt reading the books, anyway. I didn’t memorize every possible fact about it. But my Dork Passenger’s brief flirtation with Dune sticks out in my mind for a couple of reasons. First of all, I love being able to brag that I’ve been Lynch fan since I was six years old. Secondly, it marks the first time I was really aware that my special interests weren’t considered cute anymore.
I discovered Dune when I was in kindergarten. I distinctly remember walking into my living room, seeing a giant orange thing floating through space on TV, and thinking that it was the best thing I’d ever witnessed.
I’m not entirely sure why parents let me watch it, and my mother can’t remember the details, although she doesn’t seem to think that it was a big deal. I have a different theory, though.
Despite my mother’s lack of concern in retrospect, my parents were at least somewhat careful about what they let me watch, on account of the fact that I was quite skilled at having nightmares based on innocuous commercials and interstitial programs. They probably rented it with every intention of watching after I went to sleep. But, like many people on the spectrum, I had (and still have, to a certain extent) erratic sleeping habits and, at some point, Mom and Dad probably got so exhausted and desperate to actually watch the movie before they had to return it to the local Videoflixx that they just put the damn thing on. Then I walked into the room. And really, once your kid has seen and become instantly obsessed with a giant orange vagina-faced creature, the damage has pretty much already been done. So they gave in and let their weird and wired kid stick around.
I didn’t really follow the whole movie. Even smart six-year-olds with an autistic sense of focus aren’t really ready for a sci-fi epic in its entirety. And, to be fair, few adults not named David Lynch and maybe not even David Lynch actually knew what the fuck was going on in that thing. But the parts that I did follow and remember became my favourite movie of all time.
I started walking around the house, imagining, in a bit of a self-fulfilling prophecy, that I was Alia, the disturbing, too-adult girl who freaked out the grown-ups. I found a Dune colouring book deeply discounted at the local Bi-Way (there couldn’t have been much of a market for such a thing), carefully selected a burnt sienna crayon from my arsenal of seventy-two colours and wore it down to a nub as I bathed every page in the sandy tones of Arrakis. Then I took out a blue crayon and did everyone’s eyes. I discovered that my school’s library had a copy of the original Dune book, but my excitement was short-lived when I also discovered that kindergarten students weren’t allowed to borrow from the big kids’ section just yet.
I also started telling people about it.
My early experiences with sharing my special interests were uniformly positive. It’s cute when a kid shows a fascination with dinosaurs and adults loved to indulge me during that phase. Asking me to talk about dinosaurs was an adorable party trick. And while the Titanic might have been considered a little more morbid, the ship’s discovery was such a big deal in the mid-eighties that most people in the general population were at least a little charmed by my encyclopedic knowledge of the topic and my unbridled excitement for all things White Star Line. People at Titanic society meetings practically fawned over me. Even Dr. Robert Ballard himself seemed to like me well enough when I met him after a lecture in Toronto.
But there’s nothing cute about a kid who loves one of the most notoriously controversial and (unfairly) reviled sci-fi flicks of all time. In fact, the only thing more creepy and unpleasant than Dune itself, for most people, is listening to a child talk about it.
My ridiculously narrow focus didn’t help matters, either. I mean, I have memories of telling people about the suit scene, with no other context or explanation. Just “In Dune, there’s a guy who is new on the desert planet, and he knows how to put the special desert suit on without anyone having to tell him. And the planet guy is really impressed!” What the hell do you say to that?
My parents, as always, were wonderfully patient and supportive of my latest all-encompassing fixation. Everyone else was, understandably, less so.
I don’t really blame anyone for their reactions to me. You probably shouldn’t encourage a child’s love of Dune, and the colouring book is now, rightfully, considered a horrible, mind-warping idea. But those reactions really did a number on me.
At least some people probably assumed that I was just a spoiled, overindulged child who needed to be taken down a peg or two and taught that she wasn’t a precious snowflake with the best, most fascinating interests ever. Maybe they were right. But maybe not. When I look back on a lot of the clashes that I had with adults who were not immediately related to me during my formative years, it feels more like everyone was so worried about me developing an ego because of my intelligence that they never stopped to determine if I had any self-esteem to begin with.
I didn’t feel special or precious. I certainly didn’t feel entitled to the attention. I liked it, though. Talking to adults about the things that I loved were some of the most positive social experiences of my young life and yes, I wanted more of that.
I had a lot of social blind spots as a child, but I have always been extremely aware of when I’ve done something truly undesirable or when I’ve disappointed someone. And I felt that very acutely when I tried to tell people about my new favourite movie.
In the end, it wasn’t Dune – or even my fucking twisted colouring book– that warped my young mind and destroyed a little piece of my innocence; it was the repercussions of loving Dune that did. It was one of the first events that made me realize that I was different, that there was something odd and off-putting about the things that I loved and that people weren’t really interested in them, or in me talking about them.
It wasn’t enough to stop me completely, and the whole Titanic obsession continued its course unabated until we hit the iceberg of adolescence, but there was something different about my special interests after that. They became more muted in some ways. I knew that I had to be careful about what I did with them, what I said about them and who I said those things to, that I had to hold my interests close to me like any other shameful secret. The innocence and the pure, unbridled excitement were gone.
Fear of rejection became my imagination killer.
July 19, 2011
Person I Only Know Professionally: How was your vacation? You looked tanned!
Me: I have one little sliver of boob burn.
July 19, 2011
Canadian author Hugh MacLennan once wrote (and Tragically Hip singer/the nation’s honourary weird uncle Gord Downie once partially sung) that “the human tragedy, or the human irony, consists in the necessity of living with the consequences of actions performed under the pressure of compulsions so obscure we do not and cannot understand them.”
Right now, my minor human tragedy consists in the necessity of living with the consequences of a flippant quote made under the pressure of compulsions so distracted and ill-conceived that I do not and cannot excuse them.
I had a lovely vacation. I spent a lot of time on the beach, under a sky that was only marred by enough clouds to keep me from diving headfirst into cranky overheating and sunstroke. I celebrated my anniversary by telling my husband, A, things that sounded nice in my mind but elicited some sort of self-deprecating laugh when they came out of my mouth, even though he insisted that he appreciated the sentiment (I also stuck my earbuds up my nose and blasted our first dance song out of my mouth when we went to visit the wedding site, because I am nothing if not a romantic). We went mini golfing in the darling hometown of a recent Stanley Cup winner. We ate dinner in a restaurant that had Lake Erie and shipwreck memorabilia plastered all over the walls and managed to be even more fantastic and in tune with all of my deepest nerdy desires than it was in my childhood. But I also gave into the urge to check my blog stats on A’s iPhone and discovered that I am the worst, most outdated gender stereotype-pedalling feminist and autism rights advocate imaginable.
I was already pretty embarrassed by my inarticulate, dumb-ass “weird emotional distance” line but now I feel downright miserable about the whole thing.
I said it. I can’t argue that I was misquoted or that it was taken out of context. I said “our weird emotional distance is kind of convenient for them” and I’m going to have to live with that stupid albatross around my neck for the rest of my life.
I’m sorry I said it, and not just because I’m upset that it makes me look dumb. I’m sorry because, when I really think about it, that one flippant comment flies in the face of so much of what I really wanted to say– and did say– about Asperger’s and marriage in that interview.
I was really excited when I first read that someone from the Toronto Star was looking to talk to people about the topic. Having read my share of articles and advice columns that dealt with AS and relationships in a way that was absolutely foreign and often offensive to me, I was eager for an opportunity to bring a different experience to the discussion. So I contacted the reporter, we exchanged a few e-mails, and she decided that she’d like to speak to me. I sent her my number and told her to call whenever.
In retrospect, I wish that I had suggested that we schedule a specific time for the call. In all of my excitement to talk about the subject and my desire to be accommodating, I hadn’t taken into account that I’d be better prepared and focused for an interview if I had been able to properly integrate it into my carefully-drawn schedule.
I wouldn’t say that the call flustered me. I think that I spoke articulately enough, even if my answers came in the same kind of giddy, rapid-fire bursts that used to erupt from my mouth when someone wanted to talk about the Titanic, a pace too excited, too I-have-to-get-a-million-thoughts-out-before-someone-stops-listening for normal conversation. But there seemed to be conversational flow otherwise, and I was hitting a lot of my personal bullet points.
But I was also distracted. I had been on my way out of the door to run some important errands when the call came, and I found myself constantly trying to reschedule them as I was talking. It was also blisteringly hot in my apartment, and I had to dig a face cloth out of the linen closet and shove it into my bra, because my cleavage was quickly metamorphosing into Niagara Falls, and the unbearable feeling of rushing bodily fluids and the overwhelming desire to dam the flow of boob sweat before it could defile my big girl, appropriate for public shirt were starting to further erode my concentration.
So I wouldn’t say that I was on the top of my game as the interview drew to a close. With the formal questions out of the way, I tried my hand at a little reciprocal conversation, because I figured that’s what people are supposed to do, and I asked her a few conversational questions about the article, what had inspired her to do it and how she was faring in her search for couples for the piece.
She mentioned, offhand, that she had mostly been contacted by married women with Asperger’s. That was when I opened my big mouth and said that I suspected that women with AS might have a somewhat less difficult time in relationships than men with AS. She asked why, and I was caught off-guard by the question.
With everything else swirling around in my head, with my official interview personality powering down, and with so much else going on in my life that that my ability to formulate and articulate my thoughts in a clear, concise manner was already on the fritz, I found myself struggling to come up with a good explanation for my theory.
And what came out of my mouth was some dumb shit about “weird emotional distance.” It’s careless and not really what I wanted to say. I hate that I felt the need to make generalizations at all. I am not a fan of gender generalizations at all, and I certainly don’t believe that all men are heartless warrior bastards and all NT women are needy emotional basketcase princesses. I sure as hell don’t believe that people on the spectrum lack empathy or emotions, because I often suffer from an overabundance of both. I hate that I implied any of the above.
And I’m not even sure I should even have suggested, conversationally, that I might be “kind of low maintenance” because , upon further reflection, it’s not particularly true and maintenance levels are a weird way to gauge relationship suitability, anyway.
What really bothers me is that, in the back of my head, I knew it was a stupid thing to say. When the writer read the line back to me and asked me to confirm the statement, I hesitated. Then, with a nervous laugh, I ignored my gut and said “Yes, you can quote me on that.”
I don’t blame her for putting it in the story. She had no idea how conflicted I was about the idea and could never have guessed how mortified I’d be about it later. Nor was she furthering any agenda. She just heard what sounded like a good quote and used it. I’ve done the same thing countless times.
I just wish that I hadn’t said it. Or that I had taken it back, saying that I didn’t feel qualified to discuss such a concept without more careful thought. I wish I hadn’t made any broad strokes about Asperger’s as a whole. And I really wish that I’d stuck to my original point, which was this:
Asperger’s does not loom over my relationship. The only thing that looms over it is the same thing that looms over every long-term romantic pairing: the challenge to navigate, negotiate and understand two autonomous existences with individual minds, concepts, histories, perspectives and means of expression and work together to form a cohesive and healthy partnership.
My diagnosis was not a major event in my relationship. I think it has, indirectly, had some positive influence on us as a couple, though. I feel like I can bring more to the relationship now that I actually understand what makes me behave the way that I do and now that I’m working on some of my related issues and comorbidities with my therapist. The diagnosis has also given me better tools to help explain my issues and efforts to A, and I think those things have been valuable for both of us.
We’ve always accepted each other with little to no fantasies of changing the other, so the diagnosis wasn’t that much more than putting a proper name to something that had always been a part of our life together. For me, personally, it was a relief. But as for us, I’d probably categorize it more as helpful than devastating or life-altering.
Yes, I was afraid that A would leave me for a while after it happened, but that was because I tortured myself with a bunch of awful advice columns in which people acted as if an AS diagnosis in of itself was a dealbreaker. And yes, I realize that this does happen in marriages, but the phenomenon baffles me. Finding out that your long-term partner has AS is only really a problem if you don’t love your partner for who they already are. If you’ve been spending all of those years together hoping that you would eventually be able to change your other half, then I can see how this might be upsetting.
But if you marry someone with the idea that you will eventually be able to change them, then you just might be the one with the marriage-ruining social disability.