Pardon My Aspergers

"Be prepared to appreciate what you meet."

--Frank Herbert, Dune

Introduction

First, this is an incredibly long essay. For those shitty people who read anything I post longer than 160 characters, I composed a YouTube playlist for the video links in this essay, and for a general overview of what everyone in my life must accept (or get out of my way). You can watch them in the background while you do whatever it is that's more important than reading my posts.

http://www.youtube.com/playlist?p=PL9512781182FA771F

Second, I have Asperger's Syndrome.

This essay is for you as much as it is for me. All my life, I have struggled whenever I have had to interact with other people, and while I discovered coping mechanisms and learned strategies for interacting with friends and coworkers, and while I've nevertheless managed to form meaningful, long-term friendships throughout my life, I still have trouble with even the simplest interactions. If you ask me "What's up?" or "How are you doing?", I have to think about it. I have no inherent "appropriacy" filter, and with every group of people with whom I interact I have to develop a new set of rules--partially by making conscious generalizations and assumptions (and my own stereotypes) about their race, gender, class, profession, and any other characteristics I can identify, and partially through painful and embarrassing mistakes, experiences and interactions. In writing this essay, I want to put everything on front street so that I can start living, and rebuilding, my life--and so that you can understand that I'm not an asshole or a psychopath, and that I'm not insane, arrogant, anti-social, lacking in empathy or emotion, dangerous, lazy, stupid, or any of the other names and labels I've been called so often that I've actually started to adopt them as nicknames. 

Finally, this essay will get very personal, and even very emotional at times--and, for that matter, very political at times. You might not want to read a personal history of my childhood or an inventory of mistakes and anxieties. You might even think that I shouldn't be posting some or all of this on Facebook--that I should be careful with this information and who might read it. But this is MY SPACE (yes, I'm proud of the pun) and MY STORY, and while now I have to start rebuilding my life, and even my whole identity and sense of self, I'm going to do it my way and with full awareness that there's a reason for why I'm so different from all of you. If there's one thing I've learned from thirty years of painful social interactions, it's that every conversation--every interaction I have with other human beings--is a dance. And you've gotta move too.

"Living with Aspergers Syndrome, every social interaction is fraught with danger. Every time you are in a group of three or more people, even if no one is talking at all, you have to make conscious, second-by-second decisions about who you are and what everyone else expects you to do. Every time you start or enter a conversation, it's like you have front-row seats at the Super Bowl. And entering that conversation is like running out onto the field to play with the other guys--only you're not wearing any padding, gear, or helmet, and have only the vaguest sense of the rules of the game."

--D. Deome

Can You Repeat That? Verbally?

About a week or two ago, a few events kinda clicked together in a very fortunate sort of way. First, I was reminded by a coworker in the Writing Center that a lot of coworkers really had a hard time working with/around me, and/or had been complaining about me. This was not too much of a surprise, since she'd told me before, but both times I really had no idea what the details or the roots of the issue really are. I also noticed that I was frequently being distracted by inane chores; when building a new computer, I wanted to use the fans from the old chassis, but they were very dusty and dirty, so when I removed them I felt the need to clean them thoroughly--cleaning three or four fans took me an hour and a half (because they had to be absolutely clean; I also spent about an hour cleaning my air purifier last week, and about ten minutes each time I cleaned out my vacuum's dust chamber/filter (which fills up about every 15 square feet I vacuum). At a doctor's visit, my doctor mentioned that I sometimes acted like patients with Asperger's Syndrome, and that I should look into it. When talking to my mother on the phone, she mentioned something about reading a book about someone with Aspergers, and that it sounded just like me. Nothing clicked together, however, until I was watching a PBS documentary on Netflix, which had a segment on Asperger's Syndrome. 

This Emotional Life (on Netflix, first episode): http://movies.netflix.com/WiMovie/This_Emotional_Life/70129641?trkid=496624

When I heard the phrase "I have trouble reading people's emotions," my attention snapped to the screen, and I watched in complete shock as the documentary told the story of a 29-year old man with Asperger's syndrome; although Jason's symptoms were a lot more extreme, nevertheless it was like I was watching my own life unfold on PBS--right down to the things he focused on while watching a movie.

For about a week, I became obsessed with this documentary, and began devouring every website resource I could find on Aspergers. Unfortunately, for the first time in my life, Wikipedia did not provide me with any useful answers (and medical websites were equally useless). Out of desperation, I started watching YouTube videos about Aspergers, and when I found the following video, I experienced the same pang--and pain--of recognition that I did in the PBS documentary. Again, it was like watching my own childhood (on YouTube), only this time the boy (Reuben) appeared to be far more normal or functional than the stereotypical example provided by Jason (PBS video); hell, he even looks like I did at 14.

My Crazy Life (clips from unknown British documentary):
Part 1: http://www.youtube.com/watch?v=q_PBVxGEEY4
Part 2: http://www.youtube.com/watch?v=UviCfQC8Uzk
Part 3: http://www.youtube.com/watch?v=boEuFeDO8Ow

At this point, I knew. Realization that I have Aspergers was instant and total, and I suddenly gained a new appreciation of experiential or revelatory knowledge. While I learned (and continue to learn) more about Aspergers since, I recognized too much of myself and too many of the "problems" or "does-not-play-well-with-others" type problems in interacting with people that have plagued me my entire life. As other people with Asperger's Syndrome will say, it is a diagnosis of self-recognition in others (though, hopefully, children can and will be diagnosed long before they have to see themselves in others with this condition. I'll ruminate and bitch more on this later.).

Right now, I am distraught--and it takes a lot for me to admit that publicly, since I have long since learned through painful experience to practice an extreme kind of stoicism, keeping my mouth shut (strong, intense, personal, true) emotions firmly inside and hidden from others. I've spent the past several nights flipflopping feeling either intense relief and joy, or incredible anger, sadness, and confusion; I've been crying more in the past few days than I have in ten years. Most people, when confronted with a serious diagnosis (cancer, paralyzation, HIV/AIDS, permanent disability or terminal disease) will say, "Knowing changes everything." But I don't think that there are many people who have had their entire identity--including all of their past memories and experiences, as well as their present (possibly temporary) and future identities--shattered by a single diagnosis.

What I really feel like right now is Neo, waking up outside the Matrix, and realizing that his entire life was a lie. That he never really knew anyone (and he probably wondered how of them were sentient programs), and that his entire identity was formed by experiences that were never real (at least outside his mind). Neo threw up, and spent a lot of time staring at the walls of his room and thinking. I can relate to that.

While my memories and experiences really happened--sometimes with tragic consequences--what I realize now is that, had I known that I have Aspergers (preferably somewhere between 0 and 14 years old), and what it is, all of my interactions with everyone I've ever met could have been very different--and quite likely better. More importantly, I would actually know who I am.

"I've never considered psychology to be a science, and neither did Dr. Lector."

--Thomas Harris, Hannibal 

First, Kill All The Psychiatrists: Psychology Is Not A Science

Okay, don't take that first part literally. It's artistic license and nothing else. But I had a really shitty childhood, and I think that psychology and psychiatrists deserve the lion's share of the credit for it. Granted, I realize now that with Aspergers Syndrome, it would have been shitty no matter what anyone did. But the shrinks, along with my teachers and school administrators, could have done a far better job (my parents I'm not so sure of).

Anyway, when I was a kid, I watched a lot of Western films with my parents. Or rather, in a one-TV household with only three channels (it was the 80s, and we lived too far out in the country to get cable), my parents watched them and I had nothing better to do. I quickly got bored with the predictable plots and shallow characters, and like so many other Aspies (people with Aspergers), I tended to focus on the landscapes, patterns, and objects in the films. One thing I picked up on, very early: the guy in the black hat never has to worry about what other people think of him. And while I didn't take this to any further figurative extent--I didn't end up robbing banks, killing sheriffs, or killing anyone "just to watch him die" (why do parents let children watch Westerns in the first place? They're way too fucked up in too many ways to describe)--I did realize that, if you can live with it, it's a lot easier to be the bad guy.

I was diagnosed very early in childhood with ADD. This was the 80s, and pharmaceutical companies had just discovered Ritalin, Prozac, and a whole other pharmacopia of antidepressants and antipsychotics, and I think there were just far too many new treatments than there were diseases. I'm not just being tongue-in-cheek here; I have no need (and no interest) to explain the history of ADD and Ritalin, or why they became household words and catchphrases ("Like, oh my god, Tiffany! You're being SO ADD!"), so I will simply remind everyone that doctors--psychiatrists, really, since they're the only ones who should be prescribing medications for mental disorders--fucked up in a big way, and to such a systemic extent that there had to have been far more going on than just a "few bad apples." I came to learn that I had a "chemical imbalance" (this was the extent of the explanation I received in ten years of treatment, despite numerous attempts to get someone to explain it further. Or tell me how they measured it. Or how much of one chemical or another I ought to have.), and that all I needed to fix it was a daily medication. And then, when the third medication only "worked" for a little bit, it was my fault for not trying harder.

It was my fault that I couldn't pay attention in class. It was my fault that I couldn't go to sleep at bedtime (or two hours later); in fact, it was my fault for reading to pass the time instead of trying as hard as I could to go to sleep. It was my fault that I couldn't sit straight, that I got distracted by any and everything in the classroom, that I would daydream while the teacher was talking, yada yada yada. Long story short, if I would just follow the rules and do what I was supposed to, I wouldn't be getting bad grades, I wouldn't be getting picked on all the time, I would have friends, and I wouldn't be spending every other day in the principal's office for reading in class (or reading ahead while the other kids struggled to read a passage aloud, or working on my math homework when I was supposed to be learning to "Just Say NO! To Drugs!"). I was even told, year after year, that it was MY fault that I was bullied because I was "responding" to the bullies (by telling them to shut up? by running away? It was certainly my fault whenever I would throw a punch because the teacher saw me do it but not the bully). I'm not bitching about the bullying, and really don't even care that, year after year, teachers and administrators only cared about the "normal" kids and saw me as someone that they were "tired of dealing with." My point is that, as far as socialization goes, I might as well be the bad guy because it was my fault anyway.

And I might as well forget about doing anything to please anyone else, or rely on anyone else, yada yada yada. I learned to be happy by myself, to live inside my own damn mind (or books, on the rare occasion that I was allowed to read quietly). And this helped me get through the hard times--like 3rd and 4th grade, which I spent in the "Special Education" classroom (yes, I rode the short bus to school. For ADD. Seriously.), when  the teachers (plural--there were always more than one) decided that not paying attention in class was depriving other kids of their education to such a horrid extent that they would lock me in an 8x8 foot room (linoleum floor), without anything to read or do, or anything soft to sit or lay on. Granted, it's not all a bad thing that this happened; being able to withdraw into my own head got me through many days when I was homeless. But I also learned to keep my thoughts and emotions to myself, lest they be used against me by shrinks, principals, bullies, or other predators, and that I was and always had been a bad guy.

In high school, I did manage to make friends, girlfriends, boyfriends, etc. I tried, like every other teenager, to be someone else and fit in. But I never managed to form any kind of long-term friendships, I never learned any kind of acceptable fashion sense, I pissed everyone off on a regular basis by saying the wrong thing, and when I became so desperate to be thought of as a "good boy" that I even got involved with a friend's church and youth group, I only discovered that the "good" kids in church were warned by their parents to stay away from me (I damn well kept my mouth shut in church, so I have no idea why. My best guess is was that I didn't pray hard enough--or rather, loudly enough--to be a good Christian). When I was invited to a beach party at one girl's house, some of the other kids asked me (and this was a constant refrain through my life), "Why are you here?" [subtext: who invited you?] I knew damned well that "Brittany invited me?" was not a good enough answer, and that if I ever wanted to belong in church I would have to do far more than dropping out of Biology and giving my life to Christ (I think I was "born again" about five or six times by the time I gave up). Most importantly, I learned that the other kids could behave as un-Christian-like as they pleased, and I would still be the one that needed to be "prayed for."

Back to the subject of this subheading, when I was sixteen my doctor retired (at 70? 80? 90? The dude was probably Freud's first student). At my first meeting with my new doctor, my mother started to tell him that I was "still not behaving" and that he needed to "increase the dosage." Thankfully, this doctor was young enough to still remember something from medical school--and to care--because he looked at my chart, told my mother to leave the room, and then said "So many kids in Canada have had heart attacks on this medication, at half your current dosage, that it was banned there a few years ago." While he said he didn't know of any tests that could show it, he warned me that it nevertheless could have done significant damage to my heart, and there was a real chance that I'd be dead by 30. But, at my mother's insistence, he put me on a new medication that made me balloon from 140 lbs (5'9", BMI 20.7) to 230 lbs. That was when I put my foot down, threw away the pills, had a drawn out screaming and fist fight with my parents, and decided I was done with medication and ADD. And that shrinks are full of shit.

The problem with psychology is that researchers are the only ones who ever look for a better answer or a deeper understanding of a disease, syndrome, or condition. While Aspergers didn't make it into the DSM until 1994--and still isn't very well understood, judging by its elimination in the DSM-V--there were still opportunities for any number of psychiatrists--or real doctors--to make a better diagnosis. I've since had other experiences with shrinks because--desperate to figure out why I could never "fit-in," why people continued to tell me there was "something wrong with me" and that I should "seek help" (for saying the wrong thing?!)--I truly wanted to be "normal." 

The worst part is that I actually know what it's like to be "cool," to be "normal," to be the life of the party, and to be accepted. At 19, I discovered (quite by accident, as I wasn't expecting it) a group where I could be accepted. Where I "fit in." And yes, even "cool." As my roommate Leah put it at the time, "I actually like you when you're high." Another friend told me, "Unlike most people, you actually turn into a decent guy when you're drunk." The problem, I think, is obvious. I have no idea why intoxication turns off whatever symptoms of Aspergers frighten people away so much (even if everyone else is sober), but all the psychobabble bullshit that says that people with Aspergers are prone to substance abuse and drug addiction because it allows them to escape reality is wrong; frankly, it's the only way we can ever be in reality--or rather, at least, your reality. 

No, I don't do drugs anymore, and I don't give a damn if you judge me for ever having done drugs. I'm used to being judged--for everything I do, and, at the heart of the problem, for who I am. But, if you must judge, I insist that you first stop for a moment and imagine that the only way you could have a "normal life"--all of it, including dating, love, a job, friends, great sex, and even your family--is to be "high." Now imagine the kind of strength, character, resilience, and moral/ethical "goodness" you would need to have to be able to choose social exile, and give it all up, rather than be "high"--and that you had to do it on your own, without any support from your friends and family, without any kind of program or substitute or medication, through sheer force of will. And finally, imagine that you could have kept such a secret all your life, without anyone (who would judge you for it) knowing it--and choosing to publish that secret for the sake of honesty, and a hope that it will inspire someone else who may be struggling, and knowing that there is nothing you can personally gain from it.

I've lost jobs (and god knows how many promotions) because other people didn't want to work with me, or because I said the wrong thing to the wrong person, or just because coworkers didn't want me around. I've lost friends because "there are things you just don't say" (or do). And I never dress well enough, or I dress too strangely, or I offend people without noticing. So I've become comfortable with the fact that I'm the guy in the black hat--because, as the philosopher--Rick Nelson--once said, "you can't please everyone, so you've got to please yourself." And while every fucking after-school special, self-help book, inspirational speaker, public service announcement, and other sources of bullshit really are right when they tell me that I should just "be myself" or be "proud to be me" and "do my own thing," they all have the same fine print: [*as long as you act like everyone else.]

Fitting In

That advice works fine as long as you don't need to work or go to school. But if you want a paycheck or a degree, or really want to have any kind of human contact, and you have Aspergers (or are "weird" for another reason), the last person you need to be is yourself. Luckily, around 18 or 19, I bought a black hat.

There's no polite way to put it: there isn't anyone in my life, including most of you on my friends list (and a few on my block list) who I haven't lied to or manipulated. I might even have had good reason on more than a few occasions--I don't know because, honestly, I've learned not to think about it. Worse, I've only been caught a few times, so chances are, you didn't even know it. 

For a long time now, I've thought of myself (to myself, of course) as a benign sociopath. Or, to borrow a phrase from the BBC's Sherlock, a "high-functioning sociopath." I'm not Hannibal Lector (in fact, my diet is mostly vegetarian) or anything, but I have learned that it's just plain easier to act the part that everyone expects of me. I'm still not very well accepted, but I can at least hold down a job, banter with coworkers, and generally be accepted as a friendly, cheerful, helpful, and (I hope) likable guy, albeit a bit shy and awkward, and given to the occasional Joe-Biden-like "gaff." Some of you may have even met that guy.

I hate that guy.

He's a doormat. Unambitious, selfless, unappreciated, constantly ignored (if he says anything at all), and otherwise one of those "nice guys" bound to finish last. He'll cheerfully stop whatever he's doing to help you, he'll buy everyone a round of drinks (and another round, and another), and he never asks you for his $20 back. He'll cover the graveyard shift, seven days a week for the whole summer, no problem. He always has a cigarette to spare (and always has a lighter). He'll cover your shift so that you can go to the club to "get drunk and pick up chicks" (because you haven't been able to do so for two weeks). He'll laugh at your jokes, even when they aren't funny. He'll never hit on your girlfriend (probably because he's gay, even though he denies it). He'll give you a room in his apartment, help you move in, and even give you a break on the rent so that you can pay your child support. He's a snappy dresser, though maybe a bit too formal. Great tie, though. When you need a shoulder to cry on, he always has time--and tissues. He cooks, he cleans, and he'll let you hop on his computer even if he's using it. He's great with the customers, and always follows the rules. If there's a mess to clean up, he'll do it with a smile. And he's a great wingman if you go to the bar. In short, he's a model employee, the best friend, and the perfect sidekick. All he ever wants is to be "part of the team." Why the hell aren't there more people like him?

I hate that guy.

Grad School

As I've said, you may have met that guy. 

I got into grad school by the skin of my teeth. At the very least, I have little evidence to the contrary, and a lot more to support it. I won't name any names--because I honestly don't care--but I came in more determined than ever to "fit in" because--aside from going through every day in paralyzing fear that someone was going to figure out that I wasn't smart enough, didn't work hard enough, didn't dress well enough, and didn't act like a grad student ought to--I discovered (after being accepted) that there were people who didn't want me there. And that was before meeting my cohort. The word "antisocial" comes to mind. Well, enough of that, I've made my point.

Unfortunately, I was still playing a game where I didn't know the rules. Even more unfortunate, I had entered a discipline where infighting, backbiting, gossip, office politics, and all the rough-and-tumble social relations that I saw more than enough of from career drive-thru cashiers and power-drunk assistant managers in the service industry seemed to be more important than scholarship. I also came in with the stupid misconception that to be an academic, I had to disagree with others for the sake of discussion (preferably with a witty rebuke or a snarky comment); thankfully, one of my professors corrected me on that, albeit in front of the entire cohort (and that was the last time I disagreed with anyone for about a year). Still, though, I never felt as if I fit in, and I was still aware that people continued to whisper about me. For example, in an effort to make sure that no one had the opportunity to say that I was "antisocial," I forced myself to attend every social gathering, engage in "chit-chat" (by and large, Aspies despise small talk), and socialize with everyone to the point that my doctors put me on clonazopan (antipsychotic) for the panic attacks, night terrors, and nervous tics. And I would still hear people say things like "he was sitting with the girls, and still trying to join in even though it was clearly a women's conversation." By the end of that semester, I was up to about six clonazapan per day, and three different blood pressure medications. And that was before I started teaching in front of two classes of 26 students.

The following semester, I grabbed my black hat, kicked that guy in the balls and started acting like myself. I also got a dog, which helped tremendously. What helped more, I think, is that I gave up on socializing or trying to "fit in," spoke my damn mind, and pursued my own research (and if narcolepsy hadn't suddenly made an entrance, and I hadn't been sleeping 18 hours a day or passing out in the most inconvenient places, I would have done great).

I did discover a few things about myself. I found that teaching is the only thing I want to do with my life because, for some reason, I'm not anxious around my students (well, just a little bit--until I start the lecture). I found that lecturing for thirty minutes on a subject I know well is the perfect fit for someone with Aspergers. And I realized that, not only can my ability to hyperfocus on reading about or writing about a particular subject I'm interested in--in a very specific way and language, which is another peculiarity of Aspergers--allow me to succeed (brilliantly), but also that writing is almost completely free of the damned social cues, body language, fashion sense, and office politics that I'm more or less blind to.

Best of all, I know that Aspergers (or whatever acronym soup the APA is using in the DSM-V) is protected by the Americans with Disabilities Act. And while I will still be going into therapy to learn as best I can how to recognize and interpret social cues and body language--believe it or not, I still don't want to be an asshole or an outcast, and I really hate conflict--I know at least that I can be myself, rather than that guy. Because, frankly, there are not enough anxiety medications in the pharmacy to continue to be that guy, or to overcome the guilt and sickening distaste I have for wearing a black hat.

Instead, I want to find out who I really am, because I've been trying to be that guy or the gunslinger in the black hat for so long that I honestly don't know who I am, or how things could have been different if I had known twenty years ago that it is okay, normal, and fucking fine to be unable to ever really fit in. I have a lot of anger, resentment, and bitterness that has been boiling inside for thirty years, and unbelievable pain when I think of all the opportunities I've lost in my life because I didn't know. Now that I do, it's time to start being me. And I think I finally understand what it means to forgive, because I do feel a certain kind of peace with everyone else; as far as I'm concerned, everyone is forgiven--because they didn't know either. And I think that's a good place to start a new life.