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Let’s talk about autism for just a moment. What does it look like? What does it sound like? Is it that fidgety guy with his hands glued to his thighs who won’t make eye contact or speak out loud, that socially inept know-it-all with poor hygiene who wanders around babbling obscure facts about elevators and talking to himself, or perhaps your favorite famous mathematician? They all supposedly have it. But what is autism, really, as distinguished from, say, Asperger Syndrome?

In May 2013, the Diagnostic and Statistical Manual of Mental Disorders‘ Fifth Edition (DSM-V) poked at that question and, objectively, improved its definition and process on the matter. However, despite its improved clarity and efficiency in the new guidelines, I believe the new DSM has overlooked something important, and that its new rules may cause more harm than good. They certainly have for me.

Autism is classified in diagnostic criteria as a spectrum, containing myriad points of strength and weakness –  high and low functioning in terms of social capacity. Each person wears it a little differently, allowing it a wide array of diverse manifestations, from boiler-plate nonverbal learning disability, hypersensitivity and limited interests to photographic memory, advanced verbal skills, total recall and other talents.

I’m on the high functioning end of the spectrum – one of the bold souls who never shuts up rather than never speaks, who can almost pass for neurotypical eccentric on a good day and who opts for persona and theatrics over a historically less successful quiet authenticity. It used to be that we were placed under another label called Asperger Syndrome, which while technically on the autistic spectrum, has retained a sort of separate status.

To have full-blown autism was huge, while to have played-down Asperger was, at worst, annoying. When trying to get through the day in a maddeningly inconsistent world of the neurotypical and the judgmental, I prefer the latter label. I have become accustomed to the fact that the “Aspie,” as a select few of us are known to refer to ourselves, is a wholly separate sense of identity altogether from the autistic, and I have enjoyed that separate status, albeit completely arbitrarily. While “autistic” feels like a sentence, “Aspie” is a loose-fitting designation shared by intellectuals of all schools. It is specialness, individuality and authenticity. It can be made to mean whatever you want it to mean in its reappropriation by the individual.

Like many self-styled “Aspies,” I am known to enjoy a sense of order, symmetry and at times a minimalist efficiency. For this reason, I should have been happy when the DSM-V appropriated the admittedly clunky and redundant Asperger Syndrome label in favor of a simpler, more streamlined Autism Spectrum without unnecessary offshoots and satellites.  But I was not. I was initially unconcerned about the change, in that the vernacular was not likely to catch up to it for some time, but 16 months have passed. I’ve found that, as time has passed and the technically more accurate nomenclature has slowly seeped into our culture through politically correct individuals and films such as “Mozart and the Whale,” it has fundamentally changed the way I view myself and even the way I function.

Simply stated, the terminology is inherently inflammatory. Ironically, the DSM-V has made a classic Asperger mistake in doing the logical thing but still being wrong for a lack of accounting for the human factor; I have learned the hard way that this is a damning sort of error in that people, on or off the spectrum, are known to be of an irrational, emotional and reactionary lot. I certainly am.

It’s difficult to explain, in that the phenomena are entirely subjective and inherently unquantifiable, but when I wake up in the morning and think of myself as an “Aspie,” I feel kind of awesome. I have a super-brain that lets me read, write and draw above standard operating parameters. My quirks and eccentricities are loveable and adorable, and in terms of specific trivia, in my interests, I am the undisputed king of my own little hill. I feel capable, intelligent and embracing of who I am. I’m sort of a rock star.

Contrast that to when I wake up in the morning and think of myself as a high-functioning autistic.  Even though I have no reason to do so, I feel differently. I feel dulled and oddly like a broken toy. I go through my day in a stupor, slowly forgetting what I can and can’t do and instead doing what the textbook autistic “should” and “shouldn’t” do. I can’t make eye contact – never mind that I’ve been working on that one for a long time, and I’m actually getting quite good at it. I won’t initiate conversation – never mind that I’m wearing my power tie and I should be able to do it just fine. I must be rigid and overly literal in all matters, even though I’ve come a long way on this point in recent years.

Without the admittedly redundant “Aspie” island to make my own I find myself untethered and lost in the spectral sea, moving only with the waves and without volition. Do not save progress. Do not level up. Do not pass Go. Do not collect 200 dollars. Do fit a profile. Do become a statistic. Do learn helplessness.

I suppose what I’m really trying to say is that self-image and self-assessment are important, and that I’m probably not the only one who feels a bit lost under this new use of this larger umbrella term. Perhaps the worst thing of all is that as I have changed the way I see myself, I have not only failed to champion the neurodiverse, but in a way I have turned on them, making a bogeyman of non-qualified autism with stereotype and stigma rather than fact and experience. That’s a mutiny in the ranks. I pride myself on my open-mindedness and ability to see multiple perspectives, but if I’ve lost my objectivity, then I wonder if the problem is only in myself or if the stimulus is also at fault.

So if not out of logic, I appeal to the DSM-V out of, and I can’t believe I’m saying this, emotion and ineffable human error. So please, do as so many of your autistic spectrum patients do every day and ask yourself if you’d rather be happy or be right, and then do as the successful ones do and allow yourself to be a little illogical to preserve the peace. I don’t know why it always comes down to that, but it does, for you and me both. I didn’t claw my way up through social purgatory and past the imprecise, overstimulating and unequally obvious just to end up at the same place where I started. I’m bringing “Aspie” back, and you should, too.​

–By Sam Ready

 

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