Tag: autism spectrum disorder

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

Paul Fidalgo
sand_maurice_masques_et_bouffons_11
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

Paul Fidalgo

[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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Asperger’s, Corrective Lenses, and the True Self

Paul Fidalgo

What does it mean to “be yourself”? I think it means to behave as you would if you were more or less unconcerned with how others perceived your behavior, and I assume it’s implied that this being-yourself behavior is largely within the bounds of the law and socially acceptable norms.

My recent diagnosis of Asperger’s syndrome has opened up the opportunity for me to let go of my self-doubt and self-mortification, and to begin to embrace my Aspie nature, within reason, without concern for how it plays. It sounds pretty exciting! A lifetime of anguish can now be discarded, and real liberation experienced! I can be myself! I can be the real me!

The problem, however, is that I’m not sure what the real me actually is. I’ve never really experienced the unfettered, unthreatened real me. Depending on the circumstance and either my comfort level or lack of inhibition, I presume have let varying degrees of “real me” emerge, be it in small drabs or convulsions of impulsivity that I have almost always regretted. But to put down all of the armor, to remove the masks, and to deactivate the constant self-surveillance, I do not know what that is. I don’t know who that is.

I mean, it’s “me,” right? But “me” is also the sum of my experiences plus the “real me” of genetics and biology. By that way of thinking, the self-loathing and self-censoring mini-golem I have been all my life is the real me.

However, now I know about my condition. I know that my brain was wired differently at birth through no fault of my own (or anyone else’s). So this new knowledge is now one of those experiences, it’s a new piece of “real me.”

Which I guess brings us back to where we were. So maybe the question is, what is the real me now?

One way to answer that might have to start with a different question: What would I like to be the real me now?

When the prospect of being prescribed things like anti-anxiety and anti-depressive medication first came into my life, I was very reticent. I was hung up on the fact that what makes me who I am is my brain, just the way it is. While taking certain medications might make me feel better in certain ways, and make life more manageable, I feared that the medication would fundamentally change who I was, by tinkering with the chemistry of my very Self.

But what I came to accept and appreciate is that if we’re lucky, life, being ridiculously short, offers us the chance to augment or repair aspects of our existence that hinder our well-being. I wear glasses to correct my vision, and I don’t consider blurry vision to be a key aspect of my true self. Having corrected vision absolutely impacts how I perceive and interact with the world, with countless internal and external implications. It’s a small thing, to wear glasses, but its effects are life-altering. But I don’t feel I’m being untrue to myself to wear them. If anything, I now consider them a part of my identity. I have adopted them into my “self,” so that “real me” is, among other things, a guy who wears glasses.

And so I decided it could be for pills to make me less sad and less scared. The real me would now be a guy (with glasses) who takes pills to make himself less scared and sad. That feels okay.

Today, I’m a guy who’s just found out he’s autistic at the age of 38. I didn’t have the benefit of this knowledge growing up, so I assumed I was faulty and subhuman, sent into this breathing world scarce half made up.

Cynthia Kim of Musings of an Aspie wrote something about self-acceptance that echoed my own experience, to a point:

When you grow up knowing that you’re different – and worse, suspecting that you’re defective – acceptance doesn’t come naturally. Too often, autistic individuals are acutely aware of the ways in which they don’t measure up to social norms. As a child, I knew that I wasn’t like most of the other kids and in the absence of an explanation, I assumed that I was simply doing something wrong.

Finally having an explanation for my differences forced me to challenge some long-held beliefs about myself. What if all these things that are wrong with me – I was still thinking more in terms of “wrong” than “different” – aren’t my fault?

Those first inklings of acceptance brought me immense joy. Decades of thinking I just wasn’t trying hard enough were cast in a new light. I wasn’t defective; my brain worked differently.

I hoped for immense joy, but it hasn’t come yet. When the diagnosis was confirmed, there was no light from the heavens that lit up my soul and freed me from my past. A burden was lifted, surely, but a different one was placed on me, one that sounded more or less like “now what?”

To be sure, self-forgiveness is coming. I now know why I didn’t “measure up to social norms,” when “be yourself” was simply not an option. And that’s very welcome. But what’s not clear yet is how to move forward.

Here’s what I do know. I want to drop the armor and masks in a pile, and walk away from them forever. I want to shut off that self-surveillance system that’s been running inside me since I can remember, and disconnect the power supply.

But I also want to know which of my Aspie quirks and predilections can be fully embraced, which I have to regulate, and which I have to bury. I know I can’t let go of all control and turn into some hyper-misanthropic live wire. I have responsibilities, and I have people I care about who need me to regulate. Who need me to put my Asperger’s traits aside as best I can, at least sometimes.

So it seems what I need to do is to start examining all these pieces one by one, and experimenting with what works and what doesn’t, which aspects of the “real me” I can run with, and which ones need to adjusted or worked against. I’ll need to discover how they work in different combinations with each other, and in what contexts. I’ll need to decide which ones I actually like, and which ones I want to curtail because of some unhappiness they might bring.

What eventually becomes the “real me,” then, will take time to emerge, and be at least in large part of my own making. I’ll be a guy with glasses, who takes pills to keep from getting to sad or scared, whose brain is wired to have some real big problems with the world around him, who also has some gifts to take advantage of, and who found out at 38 that he has Asperger’s syndrome. Somewhere, in all that, I hope I can find a real me.

And I hope that eventually I can, for the first time in my life, be myself.