Autistic Alienation: Not as Simple as Intense Introversion

One thing about Asperger’s/autism that I think is hard for neurotypicals to understand, and is also hard for me to come to terms with, is that as an autistic person, my attitude toward socialization isn’t merely binary. The introversion instinct is incredibly strong, and it’s true that I can’t heal, rest, or reengergize without relative solitude. But that doesn’t mean I therefore never want human contact.

It gets even more complicated than that, though. If it were as simple as “I like to socialize a lot less than most people, but I do want to socialize a little,” that’d be relatively easy to manage. You just keep social interaction to a manageable level, whatever it happens to be For the individual. But here’s the thing: even human interaction that an aspie might affirmatively seek out is still fraught with discomfort, self-doubt, anxiety, and pain. It’s still exhausting, and sometimes dispiriting, unless it's particularly fulfilling in some way.

So when an introverted aspie is avoiding other members of his or her species, they may also be experiencing, at an atavistic, lizard-brain level, a longing for human contact, to feel assured that one still “belongs” in the tribe. And even when that validation is achieved in the most positive and affirming of scenarios, it’s still incredibly difficult.

This is the picture: Imagine a human being whose brain has developed differently than almost everyone they know. They may be incredibly intelligent or talented in some way or other (or maybe not!), and have a great deal of thoughts and feelings they desperately want to express and share. But the agony of submitting oneself to the evaluation of normal people, even in the most banal and benign circumstances, is often too much to bear, or at least too uncomfortable to make it worth the effort. When they do take the leap and try to mix in normal society, the energy drain is rapid, the stress is damaging, and the tiniest faux pas (real and imagined) is burned into their memories as scarring humiliation. So this human being, full of life and solitary, feels lonely, while determined to remain alone. Until the loneliness becomes too much, such that a new attempt is made.

I miss having a set of friends that I was comfortable with, that I could develop routines with, and rely on for that base-level validation that I was in the right species, that I had a tribe from which I was in no danger of being ejected. I have had that. A lifetime ago.

I don’t have that now, and most of my experiences after my life in professional theatre has been characterized by anxiety over being banished from whatever tribe to which I submitted myself, or else having no tribe at all, and cautiously yearning for one. (And not knowing that I was autistic in the first place.)

It’s not just that we want to be alone. But it’s the only way we know we can safely be.

Excruciating Information

A fellow autistic blogger whose work I deeply admire pointed me to this short little PSA video from the UK that she said was revelatory in how it reflected her own experience. And so it is for me.

Particularly when it comes to the Asperger’s part of the autism “spectrum,” I think people – including actual Aspies – tend to cling to the idea of social awkwardness and alienation as the defining traits. But using this stereotype as definitive ignores what I think is one of the prime causes of that awkwardness and alienation, and that’s the difficulty we have in processing stimuli with the same capacity and at the same rate neurotypicals, and that difficulty manifests not just temporally – it’s not that we just have to sit there and ponder for a few moments and then move on – but physiologically. It’s painful.

The example you’re most likely familiar with is that of the noisy, crowded room, say at a bar or a party, an environment that can be incredibly uncomfortable for many of us. I usually see it described in terms of the noise level and the variety of voices coming from all directions emitting sound. But that’s just one factor. There’s the visual, of course, as one is surrounded by faces and bodies and objects and movement and nonverbal expressions and cues. And there’s also the tactile, the feeling of one’s clothes, the floor beneath you, the furniture you may or may not have your weight on, the food you likely have strong aversions to, and quite especially the temperature. And that sound? It’s not just the decibels, but the information contained in the voices, what they’re actually saying in the chit chat, in the music blasting, and on and on.

That’s a lot of information to process all at once, creating palpable discomfort, anxiety, and misery in a context that demands a certain kind of relaxed behavior.

There are so many other ways this comes up in my life. I can’t for the life of me orient myself in space, for example, so whether we’re talking about driving directions to places I’ve been many times before, or just navigating the interior of a building with more than four rooms or so, I’m constantly bewildered. I can’t process that information at a rate that makes the directions useful, nor can I process the information without extreme discomfort and crippling anxiety, which only makes the processing harder.

If I get an email at work that is more than a few sentences, I know I will have to relax my brain and read it carefully a few times because too often I have replied or executed instructions based on a misreading of the text or with significant pieces of data missing from my comprehension. That screen full of words begins, in my eyes, as white noise, a garble of glyphs in pixels, especially if it’s part of a threaded conversation. And again, that doesn’t just spark confusion and compel me to take my time, it hurts, it’s dizzying. (So yes, when I read books, I’m pretty damn slow about it.)

So I understand this young girl in the video. That was me at that age. These otherwise innocuous, benign interactions that a person has throughout their day, these humdrum travels from point A to point B that nonetheless feel perilous, these unanswerable questions launched at you and meant as small talk, the torrent of trivialities that threaten to drown you even when you don’t know why you’re expected to care, the inadvertent offense or problem you cause as a result of your efforts to shield yourself. It’s too much. Even today, though I fake it much better than I did then, it’s too much.

The world obviously isn’t set up for autistic people to succeed. It’s a miracle so many of us have. And the thing is, I don’t think it would take so much for the rest of neurotypical society to give us a little space. If only it weren’t so excruciating for us to ask for it.

Emulating Abed

Abed Nadir from the show Community is, apparently, supposed to have Asperger’s syndrome, though it’s never stated explicitly in the show (I’m only on season 2 so maybe there’s more coming). As a newly-minted Aspie, I can’t help but look to his portrayal as a means to better understand myself. Of course I know that this is a highly fictionalized portrayal of an Aspie, and that the show itself exists in a kind of magical reality in which Abed is not only different but almost superhuman in some ways.

But along with being an oddball with Asperger’s, he’s also beloved. Not just in spite of, but because of his quirks, he’s adored by fans and the characters in his world. I can’t help but envy that.

One of Abed’s marquee quirks is his obsession with movies, and his desire to reenact them. Though fully secure with himself (as he even tells his friends in the first season), he nonetheless sees life through the lens of well, lenses. Movie camera lenses. In his mind, he frequently hops in and out of the personas and scenes of films.

I wonder if this isn’t itself a clue to the Aspie mind. As I grew up, and became increasingly alienated from my peers and the culture at large, I looked to the screen to instruct me on how to be. Since no one ever enrolled me in a course in “how to be a person in the world,” I had to look to the television to fill me in. How did people actually talk to each other? What did they wear? What did they value? What did they feel hostile toward? What kinds of people did they avoid or hate? What did they do with their hair? How did they stand or sit? What was funny to them? What quirky traits could be accepted or loved by others, and which ones would they reject? TV, and popular culture, was all I had to go on. I studied it when I should have been studying my schoolwork.

I think I may have had this tendency to look for role models on TV and in popular culture even before the feelings of alienation set in. This is where the overlap with Abed comes in. Because maybe if I’d never felt so utterly rejected by the normals, I’d have continued to model the behavior of fictional characters, but benignly, as a pastime that could inform creative endeavors.

So let’s look back. Let’s pop into the mind of Paul at different stages in his life to see who he considered modeling himself after and why. Maybe we…well, maybe I can learn something from the exercise.

Charlie Brown

I was not unhappy in my single-digit years, but I knew I was different. I knew I was good-different in more ways than I was bad-different, a state of mind I can barely imagine now. I knew I was smart and funny, but I also thought about things like death and futility and longing and why we bother doing the things we do. I also thought of myself as something of a screw-up, even though I can’t remember why I thought that. I mean, what had I had a chance to screw up when I was 7? I think I lost at a lot of games. And, well, anything involving sports.

Anyway, Charlie’s angst rang very true to me. His despair was like an echo of something I didn’t know I’d already been hearing in my own mind. He couldn’t quite understand why the people around him did what they did, and neither did I. I think at that age I assumed I’d eventually understand other people, and that Charlie would too.

Alex P. Keaton

Around the age of 9 or so, I decided that I would contradict by parents’ politics and declare myself a Republican, all because Alex P. Keaton on Family Ties was. Alex’s values were orthogonal to those of his family, but he was also intellectually superior and had a cutting wit. I admired that deeply, and being as short as Michael J. Fox, I appreciated this example of a loved lead male character who stood out for his brains. And his quirks. So I could be a Republican and a hyperintellectual. Wrong on both counts.

Judge Harry Stone

Harry couldn’t stop performing. He didn’t really belong on the bench, as he explained in the first episode. Technically qualified, he was the bottom of the barrel for judges, and his behavior baffled all those around him. Card tricks, dumb jokes, and a glorification of the past all served to alienate Harry from the already-bizarre world of Night Court, and yet as the show went on, his quirks went from an annoyance to a source of nurturing, his goofiness was an indication that you were safe in this place. In a crazy world, the crazy — and good — man was king.

I was funny. Right? I was smart. Wasn’t I? I was misunderstood, but given time I thought people could come around and find my oddness reassuring. I could don the hat, make the jokes, and maybe even learn to love Mel Torme.

Data

An aspirational ideation. I knew I wasn’t and could never be as intellectually and physically superior as Data the android was, but like me, he found the behavior of those around him impossible to intuit. When he tried to ape their behavior, the results were comical, and would have embarrassed anyone who was capable of feeling embarrassment.

But he wasn’t! He just kept trying! He had no feelings!

In middle and high school, the time this show was in full swing, I would have loved to have had no feelings. I couldn’t emulate Data, but only wish to be him.

Comedians

I realized that my only chance to survive middle school and high school would be through humor when my rip-off of Dana Carvey’s George Bush impression garnered laughs even from bullies and popular kids. I obviously wasn’t an athlete, nor was I sufficiently proficient in academics to ever be considered one of the “smart kids.” I could be the funny one, though.

A great deal of my pop culture study was devoted to comedians, who won approval through the inducement of laughter. I could do all of Carvey’s impressions, which came in handy. In the meantime, I absorbed every ounce of wry standup that I could, from Dennis Miller to George Carlin to David Letterman. Yes, even Seinfeld. They stood outside the world and revealed its absurdities. I stood outside the world, so I could do the same, right?

But to emulate those comedians that I watched at all hours of the night, every night, I’d need to display a level of confidence that, while probably also faked by many of those comics, I could never, ever muster. Yes, I’d develop my comedic skills, but I’d never be able to live them.

Garp, etc.

After college I got into John Irving novels. I don’t relate to wrestling, the German language, or bears, but I do relate to men who seek to be writers and have trouble making sense of their relationships to other people. I tried to imagine myself in those roles, in the life of Garp, John Wheelwright, or, even more strongly, Fred Trumper (lord, does that name not work anymore). While I certainly didn’t want to experience the tragedies that seemed to rain down on some of his characters, I did aspire to the lives of the mind they had achieved, all the while aware that they didn’t quite belong in the worlds they inhabited, due to their own failings, passions, and, yes, quirks. They were outsiders, but managed to thrive on the inside nonetheless.

Sam Seaborn, Josh Lyman, Toby Ziegler

As my thoughts moved from theatre to politics in my middle to late 20s, I saw much to envy in the fictional working lives of the characters of The West Wing. In Sam, I emulated his intense earnestness and desire to communicate that earnestness through prose. In Josh, I emulated his ability to find novel solutions to bizarre situations, despite his bafflement and his obliviousness to the effects of his own behavior. In Toby, I emulated his concision, his brusqueness, and the intentional concentration of his wit, experience, and intelligence.

But in Toby I also shared his weariness, his impatience for niceties and for the extraneous. (His advice to Will to eschew pop culture references, because they gave a speech “a shelf life of twelve minutes,” truly struck a chord with me.) And what hit me in the gut the hardest were the words of his ex-wife with whom he longed to reunite. “You’re just too sad for me, Toby.” I was too sad, too.

Blackadder, House, Sherlock

Unapologetic jerks have always held a special attraction for me in the idolization game. Not because they were jerks, per se, but because they were almost entirely uninterested in how their behavior, which included the cold analysis of the normal people around them doing ridiculous normal-person things, impacted their standing with others. If something needed saying, they’d say it. Or even if it didn’t need saying, because, well, fuck it!

Blackadder almost doesn’t count here, because he was a conniver, and an amoral one. But his verbal evisceration of those in his way (despite his failures to overcome them) was liberating to me in its own way, even though I never attempted to mimic him.

House and Sherlock, however, have been hinted to be Aspies themselves, their incredible intellects a kind of superpower that has allowed them to thrive among the normals despite the pain they cause. With all three of these characters, I envied — I envy — their shamelessness, as in, their total lack of shame for who they are. It’s not even conscious. They obviously didn’t “decide” to disavow the approval of others, it just simply isn’t a factor in their view of themselves. Forget being a clever jerk. Heck, forget being clever at all. I’d just like to have that superpower of shamelessness.

Odo

This is less about someone I wish to be like, and more about a character I suddenly understand and feel for in a striking new way.

Though he takes a humanoid form as best he can, no one thinks Odo, the changeling, really looks like them. He doesn’t understand humanoid behavior, but he does try to map it out in order to follow others’ motivations and how they lead to actions. He is impatient with the things that humanoids seem to find fulfilling and important, which to him seem pointless and wasteful. He comes off as mean when he doesn’t intend to. He craves companionship, but knows he can’t have it. And when it all comes down to it, when he’s tired of pretending to be one of the “solids,” he must — absolutely must — return to his bucket. He must resume his true liquid form, stop pretending, find total solitude, and rest.

Odo wasn’t someone I related to when Deep Space Nine first aired. But he is now.

Kirk Gleason, Abed Nadir

This brings us to today. I’ve previously written about Kirk from Gilmore Girls, how I so admire not his weirdness, per se, but his ownership of his weirdness. Do the people of Stars Hollow find Kirk a bother? Do they think he’s terribly strange? Do they find many of his actions troubling, annoying, or even destructive? Hell yes. But he doesn’t care. And he seems to fit in all the more for not caring.

Abed cares, but about the right things. He isn’t normal, and he knows it. His abnormality doesn’t bother him, nor does it bother him that people don’t get him, just as he doesn’t get them. He isn’t bothered until something about him hurts his friends or pushes them away. Then he adjusts. But not from a place of shame, but as an acknowledgement that his quirks aren’t always compatible with all the people he cares about. His adjustments are out of love, not out of shame.

“I’ve got self-esteem falling out of my butt,” says Abed. “That’s why I was willing to change for you guys. When you really know who you are and what you like about yourself, changing for other people isn’t such a big deal.”

I’m not as smart as Abed. I’m also not as overtly weird as Abed. And Abed isn’t real. But dammit, Abed, I want to live like that. Maybe one day I can be more like Abed when I grow up.

This Situation is Awkward, and I Can’t Stand Being In It

I don’t know how to react to it, and I’m worried that I may not feel enough at the time to make the right sorts of expressions on my face. How am I supposed to look? Am I supposed to tear up? Eugh. The situation is awkward, and I can’t stand being in it.

This is the nearly daily experience of having Asperger’s syndrome, which I was diagnosed with this past August at the age of 38. Shortly after finding out, I read a book called Asperger’s on the Inside by Michelle Vines, a woman who around the same age discovered that the difficulties she had wrestled with her whole life were also attributable to Asperger’s. A friend of mine recommended her as a potential source for perspective after she was a guest on my organization’s podcast Point of Inquiry, and I must say, so many of Vines’ experiences and challenges mirror my own.

Not all, of course. On the whole, I’d say Vines is more interested in assertively establishing friendships and social groups than I am. In her efforts to do so, yes, there are some truly eye-opening similarities between us, but I, so often being burned by the social world, have opted out. She took a different approach, seeing her social struggles as a problem to solve, a puzzle. I wish I had more of an attitude like that.

Rather than go into a deep review of her book, which as you can imagine I mostly enjoyed (though I thought some of the attempts at humor were a little forced), I’d simply highlight some passages that were meaningful to me and reflect on them. This isn’t by any means exhaustive, but a selection of highlights that I felt I had something to say about.

On Aspie emotions:

Another example [of the challenges Aspies face] is the intense difficulties we Aspies can have with emotional regulation, which I’ve experienced firsthand. Emotional regulation is a technical term I’ve seen in online articles—sorry to feed you technobabble. In simple terms, it means that when we feel an extreme emotion, such as sadness, we can stay in that emotionally extreme state for a long time with little ability to make the feelings go away.

This is definitely true for me. Often this manifests just as you’d expect; as panic, intense anxiety, or overwhelming depression (or all of the above).

Sometimes it expresses itself far more deeply within me, which is often interpreted as my holding something resembling a grudge, “dwelling,” or rudely closing off entirely. But the reality is that sometimes the feelings are so powerful or painful, the cognitive effort required to just stay afloat means I have to shut off everything external, and present a kind of low, blank disposition toward others. It’s almost as though I’m booting into “safe mode” so I can devote all my processing power to working through my overwhelming feelings. I’m sure it looks weird.

On appearing normal:

So, as you may have guessed, I, like many Aspies, was not born with an interest in fashion and clothing, or at least it wasn’t there when I was young. In my childhood and early teen years, I remember being teased occasionally on free dress days for wearing the odd daggy[19] thing my mum bought me. No one told me that you don’t tuck your T-shirt into your jeans! What’s wrong with black shoes and white trousers? Or the fluorescent-pink parachute tracksuit that my mum got me for my birthday?

Oh how I wished I’d had some guidance on this kind of basic social blending knowledge, just an early seed of understanding that other people would care so goddamn much about this kind of thing, and that in order to get through the day with one obstacle fewer, it’d be wise to just check these boxes.

But no one told me. No one told me what to wear, and I didn’t care in the least, and was in fact barely aware of what I was wearing, so people made fun of my clothes. No one told me what to do with one’s hair, so it got too long and out of control, and people made fun of my hair. In southern New Jersey – which is largely populated by olive-skinned, beach-loving people of Italian descent – having a tan was considered table stakes for presentability. But I abhorred the sun, the heat, and the overall beach culture, and my genes had given me extremely pale skin that burns very easily, so I was made fun of for that all the time as well.

Also, I’m rather short, but I guess there was nothing I could do about that, though my grandmother used to tell me I failed to become tall because I refused to hang upside-down by my knees on the jungle gym. So I blamed myself for being short, too.

On communicating one’s challenges:

I started going through possible ways she and my father-in-law could respond [to my difficulties with people]. Was I going to get a talk on how I was “viewing everything wrong” or how I “need to change X and just get in there and do Y and stop overthinking it”? I guess I expect these sorts of comments, because they’re the usual reaction I get from people when I make little hints that something might be hard for me. People so often downplay my issues. “Everyone else deals with Z, so you should be fine dealing with Z too.” “Nobody likes working, but we all do it.” So that’s what I waited to hear.

Asperger’s or not, this is a common refrain whenever I’ve discussed my difficulties in school, in jobs, or anywhere else. “Everyone feels that way sometimes.” The implication is, of course, that since everyone else deals with it, and yet here I am particularly aggrieved by it, there’s something wrong with me, I’m especially weak or lazy or overly sensitive for no good reason. I’m having trouble, and it’s my own fault for being effected by it.

But no, everyone doesn’t feel like this. Not like I do.

It’s interesting that I made the automatic assumption that I need to debate to justify my views and people won’t naturally respect my opinions and feelings. Being me and explaining myself has typically been so exasperating.

Preach. This is a big reason why I think I overshare on my blog and on Twitter; it’s where I can, at my own speed, work through my thoughts and feelings and communicate in far more precise way. This isn’t to say that it’s always successful. But it’s better than most other means of communicating for me.

On processing information:

I am astoundingly bad with directions. I have just the worst time navigating through and orienting myself in space. This not only applies to things like how to drive from one location to another, but to things like depth perception, where parallel parking induces sweats, or playing video games (especially first-person perspective games) where I am constantly confused about my location in relation to everything else going on.

And when directions are explained to me verbally, my brain simply can’t process them. I try, I try very hard. I understand the meaning of the words being said to me, but it’s almost as though my brain immediately garbles the words so that as a whole, they are just gibberish. Even just being given a short list of basic instructions or tasks is a big mental load for me, and I have to concentrate intensely, repeat things out loud, and almost rehearse the actions in my head to be sure they actually make sense to me. Imagine how frustrating that is for my wife, who before this Asperger’s business couldn’t help but assume I just wasn’t listening.

Here’s Vines on this topic:

Sometimes, we just can’t function with so much sensory and verbal input and real-time speed. Or if the topic is not of interest, it may be hard for us to keep our focus on it in the face of other input. And I particularly wanted to bring it up in this chapter because, for such a long time, I really thought it was some sort of memory glitch that I had, and I used to kick myself for how bad I was at grasping and remembering the little details that people would tell me about themselves. I must be selfish, right? To never be able to remember the details of other people’s lives? Everyone else cares enough about other people to remember that stuff. What was wrong with me? It took me a long time to figure that one out—and a lot of guilt, I might add. So, when does this so-called memory issue affect me? Well, unfortunately, I can be pretty bad with directions.

Yep. And I’m also the same with details of others’ lives. I care about other people, of course, but I also frankly suffer from an acute lack of curiosity about those details. So they never, ever stick.

On being outdoors:

How many times have people said to me, “It’s a beautiful sunny day,” or, “I hope the sun will be out tomorrow,” and I’ve privately thought, “I really hope not! I hope for a pleasant, overcast day. Please give me miserable weather! The kind that makes me relax and feel at peace.” I know that other people love frolicking out in the sun and enjoying the brightness of summer, but for me, having that direct sun on me drains my energy and has always made me, subconsciously, that little bit tenser.

Yes, yes, yes, yes, yes. See my essay on the seasons from a couple of years ago, long before I knew anything about my Asperger’s.

On coping in the workplace:

I’ve had some jobs I’ve deeply, deeply hated. I know, everyone has. But while these jobs caused me unspeakable anxiety, stress, and depression, I’ve often found that I couldn’t communicate to others why I was so unhappy. When asked, “What didn’t you like about your job?” I’d find myself almost inventing reasons, or exaggerating small grievances, because I couldn’t find a way to express what was really wrong. Here’s a window into that from Vines’ own work experiences:

Within a month of starting, I began to dread going to work. On the train heading in, I would have dreams about the train crashing and sending me to hospital or the city being bombed (preferably overnight while empty of people!). I became depressed and numb Monday to Friday and spent most of Sunday crying, feeling ill because I had to go to work again the next day. I was in no way “okay.”

This all rings very true. In face, the Sunday evening stress sessions became so common that my wife gave them a name: The SNAS (pronounced “snazz”): Sunday Night Anxiety Show.

When I mentioned it to people, I frequently got nonchalant replies such as, “Yeah, nobody likes working, but we all have to do it.” So after a while, I learnt to stop complaining. At the time, I had no idea that I had Asperger’s. And while I always had the sense that it must be worse for me than for other people, I couldn’t justify that feeling. …

Every place I worked, I had an overwhelming desire to get out of there. I had trouble focusing on the work and interacting with people at the same time. I would feel frustrated or angry inside and often felt like snapping at people (although I didn’t). I dreaded having to do tasks that involved dealing with unfamiliar people. It exhausted me.

Take special note of that last thought, about dealing with unfamiliar people, and then consider that I have spent most of my post-theatre career as a PR director. Yeah, great move, right?

The paragraph continues:

I disliked having to figure out how to do new things. Most of the time, I was given new things constantly, and I really had to force myself to start them. I had trouble remembering verbal instructions and needed to write things down. … In hindsight, perhaps I didn’t do and say the right things to project the best image of myself and promote myself to others. I needed to do things my way and plan my own time. Being micromanaged by others was too stressful. I felt sick and started to hate going to work. All I could conclude was that the common factor was me.

There is a terrible fear I have of being scrutinized by coworkers or bosses. Like Vines, I want them to trust I will get the job done, but I can’t bear to have my methods or practices judged. Why? Because I always assume I’m doing it wrong, getting away with something.

Dr. Loveland, who diagnosed me, explained that these workplace experiences I describe weren’t uncommon for people with Asperger’s and that she’d heard stories like mine before. She explained to me that that “sick” feeling I talked of was the result of bottling up frustration and anxiety all day, every day. Built up over time, I suppose it manifests physiologically, causing me stomach upset, low weight, and a general feeling of being unwell.

And this is why I spent my aforementioned post-theatre career in a state of sub-optimal health, to say the least. It got so bad when I worked for the 2008 Hillary Clinton presidential campaign, with the 15-hour days of intense stress, scrutiny, and pressure while packed in a giant room with people (many of whom were themselves very intense), I fell apart. It resulted in a trip to the emergency room, a scare that I might have brain cancer (I didn’t), neurological problems that manifested in my limbs and fingers, and a full-body muscle spasm or tic that I have to this day.

Had I known I had Asperger’s then, I never would have taken that job. Or I would have at least found another way to do it.

On talking to people:

I don’t usually want to, unless I have a specific reason to be curious about them, or I have some kind of investment in them, like a close friend or family member. So I don’t talk a lot around people I don’t know well, unless of course I’m the only one there, or I feel there’s an expectation, and then I blather like an imbecile.

And as I mentioned earlier, a big part of the problem is that no matter how much I try, no matter how much I know I should, I simply can’t muster any curiosity about other people. And that’s not a good start for making small talk.

Which I hate.

Here’s Vines on that:

We find [small talk] mind numbing, lacking in content, and tiresome, because we’re mainly tuning into the details and not focusing on the social or emotional purpose of the conversation, probably in the same way that typical people can find our conversation intense, overly technical, detailed, and exhausting. For me, it’s hard to come up with anything to say in a conversation that, on the whole, seems lacking in purpose.

I have frustrated many a significant-other over this. “Why were you so quiet?” and “Why didn’t you ask anybody any questions?” Well, because I didn’t have any questions. I didn’t realize there was a kind of social ritual being played out.

So one tactic I might use to fill verbal space is to talk about my own take on a topic, or my own experience, and I find that this very often falls rather flat. Again, turns out it’s because I haven’t tuned into what the whole ritual is about.

As an Aspie it feels natural to respond to a conversation by relating our experiences, especially when the topic is emotional. We’re basically saying, “I know how you feel/what you are experiencing because I’ve had a feeling/experience like that myself.” To us, it’s a display that we’re actually connecting to a person’s feelings and are bonding with them. However, typical people don’t need to have had a similar experience to feel what a friend might be feeling, and they don’t need to relate that experience to show they understand. Changing the topic this way on occasion is fine, but when we do it frequently, all a typical person hears is, “me me me.”

Alas.

On self acceptance:

I am not close to being in the place Vines has achieved. But I aspire.

What I really feel the need to say here is that there is nothing wrong with me. I’m just different. And any difficulties I have are the result of trying to live in a world where everyone around me is so different from me, not because I myself am faulty. I think Tony Attwood hit the nail on the head when he said, “People don’t suffer from Asperger’s Syndrome. They suffer from other people.” I’m not “wrong.” I’m everything I’m supposed to be and more. But both the social world and the business world that I live in aren’t set up for someone like me. I’m the proverbial square peg trying to fit in a round hole, and I can’t function effectively like this. I have so much potential to be useful, creative, even ingenious. The world just has to find a way to utilize me better. …

It doesn’t matter what label you carry or what cause you stand for. If you approach the world with an assured attitude and pride in who you are, other people will love and respect you for it. It’s only when you hide things about yourself that you convey that something is wrong or shameful about you that needs to be hidden.

The world isn’t set up for me. And I can’t make the world change for me. But maybe I can stop attacking myself over the dissonance I perceive. I play my song, you play yours. I hope I can.


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The Long Climb Up to Zero

I’m on my way back from CSICon, the skeptics’ conference put on by my organization, which took place in Las Vegas this year. One of the presentations was by Anthony Pratkanis, who introduced us to the phenomenon of “altercasting,” wherein a person can elicit desired behavior from others by adopting, and implicitly assigning, particular social roles. So for example, if he effectively assumes the social role of a teacher, we become students, and will find ourselves carrying out the behaviors that are expected of that role (dutifully taking notes if he suggests it, for example). And the power of this altercasting is such that once we have put ourselves into these social roles, we live up to them. We almost can’t help it. It’s a tool of con artists, as well as a skill that can be used for good.

On my way in to Vegas, I got a message from my wife asking if I knew what day it was. Uh oh, was my first thought. But then she reminded me: the sixth anniversary of the night I was ambushed late at night by two thugs on the street in DC, beaten to a bloody pulp, and sent into a years-long spiral of PTSD and myriad other associated problems. The anniversary date used to have a lot of power over me, almost as though the recurrence of the date would somehow “make it happen again,” which is of course nonsense. In the past couple of years, though, I’ve more or less let the day pass without realizing it, which is a small victory.

The years of therapy that followed this event, which I’m still working through, subsequently unearthed the vast array of phobias, self-loathing, weird hangups, anxieties, traumas, and other psychological baggage I’d been lugging around more or less since childhood. The PTSD diagnosis, it turned out, spanned far more than just one attack. I had been trained to experience existential terror, fight-or-flight amygdala activation, through years of bullying and abuse in my youth. In other words, I was early on placed in the social role of a subhuman target for derision. And with constant reenforcement, I lived up to it. I memorized it.

All this time, readers will know, I had been living with Asperger’s syndrome, and had no idea. I only found this out very recently, at age 38. This means I had been born predisposed to feel like an alien, unable to comprehend the behavior of the beings around me, stunted in my attempts to reach out or communicate, and often punished for it. The Asperger’s also contributed to a litany of other ways in which I experienced the world differently from neurotypical folks, so a great deal of my fears and limitations (social, intellectual, physical) were textbook aspects of the autism.

I felt like an alien for a reason, because I really was different. The misfortune of growing up in a bullying environment led me down the path of believing myself to be a bad alien, a bum unit out of the factory, a lemon, sent into this breathing world scarce half made up. To use Pratkanis’s concept, I likely altercast my social role as an unworthy to others as much or more than it was altercast upon me by others.

When one is of this mind, I’ve learned, one sort of expects to be called out, to periodically pay some kind of penance for one’s difference, for pretending to be a normal member of the species. Not so fast! We see you. In adulthood, you can go for longer stretches of time without being overtly chastised for trying to pass as human, but the dread of being revealed is ever-present. For me, it was a constant exercise of over-analysis of my behavior, my physical comportment, my speech, the direction of my gaze, my gestures, as well as kind of running apology for my quirks, oddities, and deficiencies. It’s as if to display a running advertisement to the rest of the world that says, “I know I’m not like you, I get it, and I’m sorry.”

The attack six years ago felt like one of those moments of being caught, unmasked. Ostensibly those assailants were beating me up to get my wallet and phone, but to me, they were punishing me for existing. Not so fast. We see you. In the moment of the beatings, it felt like I was finally going to be killed for it, and that didn’t seem too strange to me. I had it coming.

I now am meant to unlearn all of this. I am supposed to be working to memorize a different story about myself, to assign myself different, affirming social roles.

The Asperger’s diagnosis should be making this task easier. Before the diagnosis, this was an exercise in convincing myself I was fine the way I was, and that there was nothing about me that inherently made me unworthy of membership in homo sapiens, which is quite an uphill climb, psychologically, intellectually, and emotionally. My mind had been trained to believe the opposite, and now I had to learn that I was as worthy of respect and agency as anyone else – not in spite of my various quirks, hangups, and differences, but regardless of them. Knowing now that I had been working with an autistic brain all this time should have eased this path, because it explained the majority of my differences and my feelings of alienation, giving them a name and a cause. Rather than working to accept a bubbling, undulating mass of traits, something that seemed scattered and very abstract, I now had a concrete, definitive First Cause. Whereas I had once felt that I had a torrent of faults of my own making with which I had to come to terms, now I knew I had a condition. I was born with an atypical brain, and there was and is nothing to be done about that, so I might as well just be okay with it.

But three months or so into my life as a diagnosed Aspie (which is a short time, I know), this hasn’t happened. What I hoped would be a huge relief and a license to finally accept myself as I am has proved to be much more complicated and fraught. At conferences, for example, like the one I’m leaving right now, I still default to the social role of the barely-tolerated freak, the alien who needs to at least imply apology for just being there. Awareness of my own Asperger’s hasn’t erased the limitations of that condition, so I still flail and sweat and panic my way through even the most banal interactions (especially those). Rather than accept the fact that I simply can’t perceive what others naturally perceive, I go into a kind of processing overdrive, likely coming off even weirder than I might otherwise, and certainly exhausting myself. The cascade of self-doubt, self-loathing, and shame for existing continues as it ever has. If anything, now I add to my longtime mountain of struggle the knowledge that I am being “a bad Aspie,” failing to accept and live out that reality.

So even after all this self-realization, after all this really hard work, there remains a social role I seem immune to, over which altercasting has no effect: Respected peer. It’s not as though I get no validation from friends and colleagues. Good-hearted people in my life expend great effort trying to imbue me with some sense of self-worth. But their words, their sentiments, their compassion, sincere as I assume it to be, just bounces off. It simply doesn’t penetrate. Words of encouragement and affirmation sound as absurd to me as being told I have three heads or telekinetic powers. I know it’s not so, no matter how passionately you try to convince me.

I know, I know. The point is not what others tell me, how they validate me. The goal is to start within myself, to memorize a new narrative of my own making. It’s just proving a lot harder than I thought. Understanding the core source of my alienation hasn’t erased the alienation, not yet anyway. And all I aspire to, really, is to stop at knowing I’m different. To take no further steps, either into self-loathing or even affirmation.

A mere feeling of neutrality about “the way I am” would be a goddamned paradise. But man, it’s still a long, long way up just to get to zero.

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Quirky: Adapting for Asperger’s at the Expense of Sincerity

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No really, I’m like this all the time.

Coming to terms with being a 38-year-old man with Asperger’s, having only been diagnosed a few weeks ago, has naturally lead to reexaminations of my behavior. The first things I’ve focused on have been those aspects of my personality that put me blatantly at odds with the rest of the species, such as my extreme introversion, my inability to read others’ signals or intentions, and my aversion to overstimulation.

But as some of this has begun to settle, I also find myself going a few layers deeper, and I realize just how much of my identity is wrapped up in how I’ve compensated for the hindrances of Asperger’s. Some of the more interesting exploration is not about my differences, but my adaptations — the behaviors I’ve adopted to mitigate those differences. Successful adaptations, even.

As I’ve noted before, some people have trouble accepting my Asperger’s diagnosis as a valid one, because all they see are the adaptations. They see me as someone who’s generally smart and funny and well spoken, someone who is obviously not “the average guy,” but someone a little different, just a little odd, and harmlessly so. A bit nerdy, a little geeky, and humorously self-effacing about all of it. Maybe a little too self-effacing, but oh, that’s just Paul. One of his many quirks.

That’s me. I’m quirky.

Paul says some weird things sometimes, or Paul gets oddly quiet and distant, or Paul seems to find everything funny, but also every once in a while he takes something too seriously, and talks a little too much, too fast, and too loud. But that’s just his quirkiness.

If anyone comes away with that impression of me, as “quirky,” then I have successfully adapted as best I could. Once it became clear to me, probably around my mid-teens, that I was never going to be considered “normal,” and not even in the same universe as “cool,” I decided (partly consciously, partly unconsciously) that I would adopt a quirky identity. I’d be the funny sidekick, the sarcastic friend, vaguely-artsy oddball, just minimally different enough to cover up just how utterly alien I actually felt. My quirkiness was like a white noise machine to help muffle and distract from the sound of the train line running right next to the house.

Decades of this practice led me to believe that the act was who I really was. In a new social setting, I’m harmless-quirky, making little jokes when it seems safe to do so. With bosses, I’m grinning-idiot-quirky, engaged and overly eager to agree. With closer friends, I’m wry-quirky, able to vent a little of my misanthropic steam, but in a safe and humorous way. And so on.

It even extends into my online persona, where the facepalming-Paul avatar has become my unofficial insignia. I have a quirky logo.

Some of it is natural, some of it is very much forced. But over the years I think I may have gotten so good at it that I don’t know when I’m “working” and when I’m just “being.”

But without this adaptive behavior, I don’t know how I would have navigated the real world. Maybe if I had known I had Asperger’s, and accepted the things that made me different, I wouldn’t have bothered to try so hard to please and to pass. What would I have been like? What happens if I decide to drop the quirk now? What will I be?

I think the scary answer to that is: sincere. I’d be sincere.

I am not an insincere person, per se, not in the way we usually think of that term. I’m not two-faced or deceptive or phony. What I mean by sincerity is a dropping of unnecessary pretenses and performances, allowing whatever person was behind those masks to come out and breathe.

That’s terrifying!

I can’t say with any exactness, but I suspect this hypothetical sincere version of me would be less expressive when in the company of others. Even in conversation, I might look distant or even severe, even if my actual feelings were entirely benign. I would interject less often, and save my words for when they might contribute to something. That might make me appear disinterested or “shy,” even if I felt neither. A more sincere version of me might excuse himself entirely earlier and more often in order to recover from the stresses of stimuli.

A sincere version of me would be less concerned with a projected personality, online and off. He would not think so much about cultivating a “brand” for himself, and simply let his work and his words speak for themselves. It would likely have no impact on the number of Twitter followers I could boast, and this version of me (again, hypothetical) wouldn’t concern himself with that anyway, because why bother.

This sincere-me would relieve himself of the stress engendered by worrying over what people thought of his various interests and obsessions. Contemporary geek culture has made the world a safe place for folks to proudly parade their allegiance to various fiction franchises, but that’s not quite what I mean, because what that really adds up to is a new in-group that happens to be made up of people who once languished in out-groups. That’s good and fine, but not what I mean.

I mean that when I have a driving obsession with something that holds no obvious value to anyone but the satisfaction of my own brain, that’s not a failing. It’s not something to be embarrassed about or ashamed of. I can just pursue that interest (within reason and feasibility) without regard to the opinions of others.

And I – I mean this hypothetically sincere version of me – wouldn’t have to make excuses for any of it. He wouldn’t have to apologize, and qualify himself with “I know this is weird” or “this probably seems silly, but…” He…I…would just follow the string of curiosity where it leads, and allow my brain its squirts of dopamine whenever they can be safely had.

The last bit of this is the hope that sincere-me would not indulge his autism and oddness at the expense of his responsibilities to those he loves. I don’t see that as a problem, because one thing that even quirky-me can be sincere about is my love and devotion to my wife and kids. I don’t need to “act” that, no“passing” required. Come to think of it, I’m very lucky for that.

The adaptations of Asperger’s have been enormously expensive in countless ways. They have eaten up time, energy, and my valuation of myself. Maybe over time, as I truly come to terms with this condition and its implications, I can begin to turn down the dials, divert power away from the quirk-generators, and recoup some of what I’ve lost. I would sincerely like that.

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You Don’t Seem Autistic to Me: Asperger’s and the Fear of Not Being Believed

[Updated below]

Do you remember when you were a kid, and being sick meant the tantalizing possibility of staying home from school for a day? I was usually pretty pleased to be just sick enough to avoid the misery of middle and high school, as long as the illness in question wasn’t something agonizing. (I did have some brutal ear infections back then that I did not enjoy.)

I remember that I would become pretty defensive about just how sick I really was. “Are you sure you’re not well enough to get through the day?” my parents would ask. I, taken aback by my parents’ skepticism, would respond with incredulity. “Yeeeesssss! I’m suuuuuure!” That defensiveness was due to the fact that I knew I wanted to be sick, and I knew that it was possible that I could maybe make it through the day, that I was perhaps playing it up a bit. It didn’t occur to me then, but does now, that this over-dramatization of illness on my part was probably already being taken into account by my parents and their decision to allow me to stay home. Melodrama was built into the stock, as it were.

Today something very similar is cropping up for me in a whole new way with my recent diagnosis of Asperger’s syndrome. (Here’s my first post on this new revelation, and some follow-up.) I am finding myself feeling very defensive about the fact of my condition. I am often under the suspicion that certain people in my life doubt the reality of my Asperger’s, that they think I’ve either gotten a bad diagnosis, or that I’ve somehow manipulated the process to get it.

In reality, only one person has actually said anything like this, and it was said with the best and most generous of intentions, saying that I am just too “charming” and personable to be someone with Asperger’s, comparing the behavior they see from me with others they know with the same condition, and who seem very, very different.

And I get that. Many people with Asperger’s, and many of the fictionalized portrayals of Asperger’s in entertainment, have glaringly severe social impairments that are obvious and off-putting to neurotypical people. There are aspies who really look like they “have something.” Whereas I don’t seem that way to most people. I would venture to say that no one, save my wife and therapist, would have ever entertained the notion that I might be at all autistic. I pass extremely well in most cases.

And why wouldn’t I? I have spent the better part of four decades trying to not seem like an alien, but suffering under the constant stress of my what I perceived to be scrutiny and revulsion from others. I had every incentive to appear as normal, as charming, as personable, and as funny as possible when in the company of people. And when attention on me wasn’t a requirement, my incentive was to blend, to disappear, to go as unnoticed as possible. As far as my brain was concerned, this was a struggle for survival. I, at a biological level, believed I needed to pass and to blend in order to live.

And I had no idea why it was so, so incredibly hard. I had to assume it was my own stupidity, laziness, obliviousness, or defectiveness.

So of course I don’t seem like an aspie to most people most of the time. As a contrast, there’s a person I know who I strongly suspect is also an aspie, but hasn’t felt the same need to adapt or ingratiate themselves to others, and has instead fully embraced their quirks, to hell with everyone else if they don’t like it. I never had the luxury to go in that direction, and it never occurred to me to be an option. I felt I had absolutely no choice but to pass.

And like the kid who is secretly glad to be sick in order to be able to stay home and watch TV all day, I wanted this diagnosis. I hoped the neuropsychologist would come back with a clear statement that I, indeed, had Asperger’s. It promised to explain so much of the pain and alienation and utter confusion I’ve experienced all my life, and it would mean that it wasn’t all due to my own failures to “live up” to the rest of the world’s norms and expectations. So I worried that in my testing, I might unconsciously try to “game the system,” and make myself seem more “aspie” (as though I would really know how to do that). Just as I was worried about others’ suspicions of me, I was suspicious of myself.

This worry, though, turned out to be a pointless one. The testing, which took about 10 hours total, was so, well, alien to me, so removed from anything that I thought could relate to Asperger’s or much of anything else, I couldn’t have gamed it if I’d wanted to. And like the mom who already presumes their sick kid is probably overstating things just a little, these tests and evaluations have unconscious leanings already taken into account, as their abstractness and inscrutability are a definite check against the gilding of psychological lilies.

In the interviews and written portions of the evaluation, I did check myself for embellishment, but it turned out I felt no impulse to embellish. Honest, straightforward answers according to my own genuine thoughts and feelings were enough. They spilled out. I told my story as honestly as one could, because that story was full and rich and silly and sad all by itself. It didn’t need any dramatization or exaggeration. It was whole on its own.

And the doctor’s diagnosis was indeed definitive. There was no hedging, no “jump ball,” as Ray Romano’s character on Parenthood put it when he looked into the possibility of being an aspie himself. It was for sure. The doctor described it as “severe,” meaning firmly on the spectrum, and she explained how my results on the barrage of seemingly unrelated tests all confirmed this, one after the other.

She also described how people with Asperger’s commonly find themselves drawn to the arts and to acting in particular. Aspies usually have sharp minds and good observational skills, and use those to their advantage in learning particular crafts and in the imitation of others’ mannerisms and behavior. I’m a pretty good stage actor, and it turns out I’m also a pretty good neurotypical imitator. As I said, I’ve had almost 40 years of practice.

So it’s no surprise that I don’t “seem” autistic to most people. The doctor actually tried to impress upon me what a remarkable achievement it is that I’ve gotten this far, with a master’s degree and a meaningful job and a wonderful wife and amazing kids, all while trudging through this morass, and navigating through the confounding labyrinth of my differently-wired brain.

But rather than take pride, I tend to feel defensive. I still stress over scrutiny. I still worry about the doubts of others. Just as I’ve felt like a fraudulent human, always about to unmasked and humiliated (which, remember, I internalize as a genuine threat to my survival), here I am again afraid that others will think my autism is overstated or a mere performance.

Just last night I had a conversation about my autism with someone who has their own personal experience with people close to them who also have Asperger’s, and I felt like I was drowning. I rambled and sputtered, I spoke too loud and too fast, and I kept lurching back and forth between filling up conversational space and worrying that I had gone on too long. I was a hot mess, and now I realize it was because I was afraid I wasn’t being believed. This person had not said or done anything to make me think that, but I just thought that. In discussing something so new and personal and raw, I scrambled and flailed to protect myself.

I don’t want to feel that way anymore. Part of this new chapter of my life is the beginnings of acceptance and belief in myself, regardless of what others think, or even more important, what I perceive or suspect they think. That would be true even if I didn’t have Asperger’s.

This is real. This is who I am, and who I have always been. And though it is as old as I am, for now it is also new. In some ways, I am new. The coming months and years will find me experimenting with and easing into new ways of being and behaving that better suit me, and stepping back from many of the affectations and masks I’ve layered upon myself over the years. Many of those layers will stay, because they, too, are me.

I guess, when it comes down to it, I get to decide. I will try not to make that process harder on myself by worrying about the imagined doubts of others, which only fixes those layers more firmly in place.

Update August 27: Since writing this, one thing should be clarified. Some of the doubt I imagine to exist, but likely doesn’t, is about me, but another more problematic version of skepticism is doubt about the neuropsychologist who diagnosed me. And I just don’t know what to say to that. She’s an expert in her field, with decades of experience, and a particular specialization in adults on the spectrum, and she tested me for hours and hours over a period of months. And that’s in addition to the diagnosis of my regular therapist. But they don’t know what they’re talking about? 

Honestly, if you think my doctor is wrong, I don’t know what to say to you. I’m not sure why you’d know better than them, or know enough to think they somehow screwed up completely. But it’s very frustrating.

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