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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Asperger’s, Corrective Lenses, and the True Self

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.

A More Forgiving Lens

I have never felt like I belonged in this species. I resembled a human, and I could force myself to awkwardly ape the basic mannerisms of people, but I would always suspect that there was something alien about me, and that everyone else suspected (or knew) the same thing.

A lot of this alienation is in regard to my relationship to and interactions with other people. I’m a pretty severe introvert, that’s no secret. Being around people, even those I love and feel most comfortable with, utterly exhausts me. But I’ve always felt that there was more to it than mere introversion. For as long as I can remember, I’ve struggled to relate to almost anyone, unable to comprehend others’ values, aspirations, needs, obsessions, or subtexts.

As a result, I’ve been at a loss as to how to blend, to appear as though I do understand, or at the very least to keep my bewilderment hidden. So I’ve thrown an inordinate amount of processing power at figuring out how to appear normal, how to talk, stand, sit, move, gesture, and where to fix my gaze or how to modulate my voice. I pretend to value the same things other people value, and aspire to the same kinds of things they aspire to, even to the point of almost entirely convincing myself.

That alienation, this constant dissonance, was of my own making, I believed. I didn’t share the same interests as others because I had somehow failed to grasp the obvious reasons they were important or provided joy. I didn’t engage in sports or other physical activities because I was weak and afraid and unwilling to put the time in to not be that way. I had trouble comprehending instructions and directions because I was being self-absorbed and inattentive. I had trouble reading for any length of time because I was superficial and distracted. I upset people I love, not giving them what they needed, because I was negligent, self-centered, and oblivious. I didn’t want to socialize because I was a stick in the mud, narcissistic, and timid. I didn’t want to go on big adventures, travel, take big risks, or throw myself into new situations because I was cowardly and lazy. That summed up why I fared so poorly, academically and socially, throughout much of middle and high school: I was cowardly and lazy.

What else could I conclude? And having reached such a conclusion, over and over, in every circumstance from childhood to my late 30s, brought self-hate, depression, anxiety, resentment, and resignation. How could it be any other way?

I did have one suspicion, though. A suspicion that kept popping into my awareness, something that felt familiar, but also sounded too alien even for me.

That suspicion only grew, however. When I would air out loud to someone, it would be summarily dismissed. I, not trusting my own perceptions of the world, not knowing how to be a person, conceded to the dismissal. But only outwardly.

I stopped conceding. I have finally pursued this suspicion to its end, and, well, it turns out for once I was right.

Last week, at the age of 38, I was officially diagnosed with Asperger’s Syndrome, a form of Autism Spectrum Disorder, along with Attention Deficit Hyperactivity Disorder. I have Asperger’s. I am autistic.

I’m so very glad to know. And I’m also glad that there was no hedging on the part of the doctor, the neuropsychologist who tested and diagnosed me. As my wife Jessica and I sat down in her office, the doctor mercifully began by saying, “I’ll cut to the chase, because I know you’re eager to know,” and told me that I had what she characterized as “severe” Asperger’s syndrome. Not severe in the sense of debilitation or in some kind of danger, but meaning that I’m firmly, well into the spectrum. Had the diagnosis been fuzzy, a borderline case, I’d never stop wondering and doubting. Having it be so clear-cut was a relief.

When I first began toying with the idea of getting tested, I couldn’t avoid the fact that simply knowing I had Asperger’s, if indeed I did, wouldn’t really change anything. There’s no medication to take, there’s no real treatment. I’d just go on as I had been. I had to ask myself, well, why bother?

Here’s why. The dissonance of my life – my strange predilections, my quirks, my strong and irrational aversions, my inability to read or connect with other people, my lack of interest in the experiences of life, my intractable obsessions over particular topics and utter lack of curiosity for almost anything else (phones, anyone?), my desperate need for safe and reliable routines, my spacial disorientation, my hypersensitivity to heat, sound, and light, my clumsiness and lack of coordination, my over-reliance on rules and logic, my inability to think in broad, big-picture terms, and most especially, the panic, pain, and exhaustion I experience in even the most benign social situations – I have always ascribed these things to my being a failure as a person. A lazy, cold-hearted, short-sighted coward.

Now I know that much of it (not all, of course) stems from something I was just born with. There was an actual condition that made it impossible that I could ever be and think like everyone else. My brain was literally different from theirs, and there was nothing I could have done about it.

Generosity of spirit is one of the virtues I value most, but it is never something I allowed for myself. Instead, I have tortured myself over my past, for the things I endured and the things I felt I had brought upon myself, because I had failed at some point to become fully human. I blamed myself for having neglected to learn how to be a normal person. I wasn’t just unable to cut myself a little slack for the failures and disappointments of the past, I had forbade myself from doing so. To forgive myself, I felt, would be to allow myself to continue to fail and disappoint.

Now I can reevaluate. I can look back on the story of my life through a more forgiving lens. I honestly don’t know what that might do to me.

As I sit here now and tell myself this is real, it’s hard to accept, even though it’s mostly welcome. I obviously have a great deal more processing to do. Some of that processing I’ll do here, in writing, as it seems to be the way I best understand and express my thoughts. In writing, the rules and parameters, and there are no social cues to miss or misinterpret, no eyes with which to avoid contact, no expected time frame in which to form and verbally express a thought, no expectation that I intuit the nuance and give-and-take of a real-time conversation. Here, I don’t have to second-guess my very worth as a human being.

Actually, maybe that’s the first thing I should do: Accept, finally, that there is nothing to second-guess, and that I don’t have to pretend to be normal anymore. Maybe I never did.

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