I’m Not Self-Diagnosing With Asperger’s (Even Though It’s A Little Tempting)

I’m probably just an unfeeling monster, is all. And I am OK with that.

Feb 20, 2013 at 9:00am | Leave a comment

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Who needs feelings when there are MYSTERIES TO BE SOLVED?

A few days ago, my husband was telling me about a friend of his whom he had recently learned was knocked up, a fact which for a variety of unimportant reasons was a little unexpected, but nevertheless a happy event. As he explained how the conversation continued, he told me, “Of course, right away I said congratulations! That’s awesome! And then --”

“Why do we do that?” I asked, cutting him off, which I do a lot (sorry honey).

“Do what?”

“Say ‘congratulations’ when someone gets pregnant.”

“Because it’s an awesome thing and a big life event. You say ‘congratulations’ when someone buys a house. Same basic idea.” 

I furrowed my brow like I do when I’m trying really hard to deconstruct something semantic that normal people don’t waste effort trying to pick apart (I furrow my brow a lot), and tried to explain. 

“Yeah, but when a person buys a house, a lot of the time that signifies a quantifiable achievement, like you have to save up for a down payment and qualify for a mortgage and jump through a bazillion hoops to make it all work out. Buying a house is incredibly complicated and signals ‘I AM MOSTLY A GROWN UP’ or at least ‘I AM GROWN UP ENOUGH TO GET MY SHIT TOGETHER ENOUGH TO BUY A HOUSE.’” 

My husband sighed heavily, which he also does a lot. “Well, people who get pregnant have to have their shit together to some extent--” 

“But pregnancy is kind of different, isn’t it? Like it can be incredibly hard to do in some cases but in some cases it’s not. So how do you know when congratulations are in order? On the other hand, nobody ACCIDENTALLY buys a house.” Even as I recall this, I realize I am terrible.

“YOU JUST SAY IT.”

“But I’m sort of curious why, or how we started congratulating people on this -- like I can kind of get congratulating someone on actually giving birth--” 

At this, my long-suffering husband shook his head and said, “You know, sometimes talking to you is like talking to Sherlock Holmes.” 

“Because I don’t always understand human emotions?”

“Yes.”

“It’s probably bad that I just took that as a huge compliment, isn’t it.” 

Part of my issue is that I personally seem to not value childbearing as highly as lots of other people do. (But it's totally okay if you feel differently! Pregnancy is awesome and pregnant people are awesome! Just so that's clear!) And part of it is that I really do want to unpack the whys and wherefores of such things.

Also, to be clear, I don’t begrudge today’s pregnant folk their congrats, even as I wonder why we say it and when we started. I know that for many people becoming pregnant is absolutely a massive accomplishment, and one that deserves immense celebration. My socialized, automatic response to any pregnancy announcement from someone, even someone I don't know well, is usually a cheerful CONGRATULATIONS, HOW WONDERFUL! Usually punctuated by a hug.  

Okay, if I'm honest, sometimes it doesn’t occur to me to specifically say “CONGRATULATIONS” unless someone else says it first. I’m pretty sure I have responded to people's pregnancy revelations in at least a couple instances with some variation of “Wow, neat!” Plus the hug. In my defense, I do love to see my friends happy. The hug I offer is sincere, but the congratulations are not always consistent. Or even genuine, because I'm probably wondering why we always offer them.  

This is why I can be difficult to talk to, sometimes.

But then the Sherlock Holmes reference happened again, a day later. In an unrelated conversation, I once again heard that I am sort of... detached from normal human feelings. It's something I've heard lots of times over the course of my life, usually from people I'm close to, even as it seems to contradict a lot of what I do in my writing -- namely, giving folks the sense of being less alone in the world, and connecting with total strangers in a pretty significant emotional way.

But for some reason, this time it was bothering me. Am I socially screwed up? Am I really so cold? How do I know if I have a problem?

So I did what any self-indulgent Internet narcissist would do: I went and looked for an Asperger’s test online.

Pretty much nothing good ever comes from my attempts at self-diagnosis. As a person with a considerable propensity toward health-related anxiety, I think the proliferation of medical information sites like WebMD and MedicineNet is the worst thing ever. Sure, these sites, when used responsibly, can help individuals to understand their diagnoses and better advocate for themselves in the doctor’s office, which is a great thing.  

But for abusers like me, all these sites do is convince me that the tiny twinge of back pain I’ve had since this morning is actually kidney failure and I’m going to die, really soon, stuffed with toxic blood and mournful regret that I never finished the raspberry tart in the fridge (WHY was I “saving” it? WHY?).

My self-diagnosis even of non-life-threatening conditions can be a problem for a few reasons. For one, it is totally, undeniably self-indulgent -- and yes, even if an actual diagnosis is beyond my means at the time. I am allowed to have suspicions. I am even allowed to have strong inclinations. But to identify myself as having something without a real diagnosis is not okay. Doctors (most of them, anyway) don’t pull these ideas from the air -- they are experts, backed up a lot of education and a lot of experience.

And I say all of this as a person with a HUGE amount of side-eye for much of modern medical culture. Yes, doctors are sometimes full of shit, like anyone else. But words mean things. And to bandy about self-diagnosis dilutes the meaning of whatever condition I'd be claiming, which then can affect the people who are legitimately (and sometimes significantly) impacted by it.

Asperger's, in a nutshell, is an autism spectrum disorder* that most famously affects an individual's ability to interact socially, or to empathize with others (there are other characteristics, but these are the most widely recognized). In this case, when Asperger’s is toyed with like a pretend syndrome that anyone can profess to have, it diminishes the respect the concept receives, and thus makes it harder for properly diagnosed people dealing with the repercussions to get their needs recognized and met. 

I realize there is a school of thought that argues a self-diagnosis of Asperger's is as reliable, if not more so, than a medical/psychological one, given the frequency with which people are misdiagnosed. I am not telling anyone how to relate to this syndrome, or how to identify themselves, but I also personally think it's a problem to be using medicalized terms without getting medicalized diagnoses, because overuse of the term, however unintended, can have not so great cultural effects.

A few years ago, the multifaceted televised cabinet of horrors “Glee” introduced a new character who punctuated her every cruel comment with “Asperger’s!” by way of explanation, and who claimed to be self-diagnosed, which meant, according to her, that, “I can pretty much say whatever I want.”

This upset a lot of people, even though what exactly the character was meant to be poking fun at  -- actual people with Asperger's, or people who erroneously self-diagnose it as an excuse to be “honest” -- was never clear (and this can be said about 95% of what happens on Glee, now that I think about it).

On the other hand, the above Sherlock Holmes reference is apt, given that in recent years, the character -- both canonical and in his updated BBC incarnation -- has been thoroughly analyzed as demonstrating many characteristics of high-functioning autism in some form. (Full disclosure? I've been an obsessive fan of the canonical Holmes since I was 10, so part of me wonders if I didn't unwittingly pattern myself after him to some extent.)

Even as I struggled with all these obvious problems with my urge to give myself an tidy explanation for my own behavior, I still spent time taking some online tests, and read about Asperger’s on WebMD, the source of so many lost nights’ sleep when I am inexplicably convinced that the weird burning smell I just detected is a sign of an inoperable brain tumor.  

Some of the “symptoms” seemed familiar, like trouble making eye contact, difficulty initiating or maintaining conversations, social avoidance, a strong preference for ritual, and problems with physical coordination, i.e., falling down and knocking stuff over a lot (My latest: Did I tell you guys about faceplanting onto the magical concrete in Disney World recently? In front of a zillion witnesses? That’s good for the ego). 

But other symptoms didn’t seem like me at all. And then I realized, y’know, I’m not ever going to seek a proper diagnosis on this, because I don’t really care that much -- and in my case, it’s not like having a name for it is going to change anything about my life, which is going pretty well even if I do struggle and usually fail to look my next-door neighbor straight in the eyeballs whenever she says hi to me. 

Maybe I don’t need a reason for why I do the stuff I do. Maybe, for me anyway, it’s OK to just be the nerdy weirdo introvert I am. Just because I'm a little strange doesn't mean I have a special condition. I think my individual desire to explain things with a self-diagnosis is more a matter of feeling like I need to justify myself to people who would call me “Sherlock” or otherwise point out my difficulty in understanding certain common emotional responses, to give myself the option of replying, “Asperger’s!”

Culturally, we have a near-irresistible urge to quickly label and pathologize everything even slightly unfamiliar or strange about ourselves. I have fallen prey to it often, to my detriment.

When it comes to Asperger's, alongside the pro-self-diagnosis crew, there is also a school of thought that argues that Asperger's should be simply recognized as a different way of thinking and relating, and not as a "disorder" in need of correction. (Notably, in the upcoming 5th edition of the psychiatric bible, the Diagnostic and Statistical Manual of Mental Disorders, Asperger's has been removed as a unique diagnosis and instead merged into the wide-ranging heading of "autism spectrum disorder.")

Whether I could be professionally diagnosed with any of this or not, I've decided that, for me, that label is not something I need -- I’m OK with how I am, at least when I’m not being teased for being strange, as that was the trigger for this silly little psychological self-diagnostic joyride in the first place.

I’m OK being weird, if it is indeed weird to be really annoyingly inquisitive about pretty much every little cultural curiosity I come into contact with. I'm fine with just being different in a vague unlabeled way. It's part of me whether I give it a name or not.

And if you have to give it a name? Just call it Sherlock. I'll always take that as a compliment anyway.

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* The concept of Asperger's as a disorder and not simply a cognitive difference is often debated.