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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