The double-edged sword of labels in the autistic world

I wrote once in defense of labels, before defending and embracing labels was cool (insert wry grin here).

The recoil against labels is palpable, and in a way, justifiably so.  After all, in a world of individuals, it’s rather simplistic–not to mention inaccurate–to assume that everyone sharing a particular designation is all automatically alike, and there’s too strong a tendency to paint with too broad a brush.  It can become too tempting to generalize and stereotype.

These generalizing and stereotyping tendencies have become magnified in my world, since I realized that I’m on the Asperger’s/autism spectrum.

Even today, in 2017, simply saying the word “autistic” to an allistic (non-autistic or neurotypical) person often conjures up images of children who stare past their parents and vehemently reject hugs.  Or children who wear helmets and blurt out “nonsensical” sounds.  And so on.

To the general population, to be “autistic” means to be predominantly male, probably young, incapable of showing love (or any other emotion, for that matter), and possibly violent.  Employment and relationships are assumed to be unattainable milestones, too far out of reach to grasp.

That might be changing, but aside from a handful of minor adjustments, the general population doesn’t entertain the idea that an autistic person grows into adulthood, may be employed and self-sufficient, may get married (or enter into another type of partnership), or even have children.  Society at large still hangs on to the fully-disabled, nonverbal, potentially self-injurious prototype.  These perceptions are no doubt fueled heavily by mainstream portrayal of people diagnosed as autistic.

The word “autistic” is bold and shocking to the world in general.  It strikes at the heart of many parents’ fears, and efficiently conveys vivid imagery of the most dramatic cases.

A label can have chilling effects when it conveys images and ignites emotions such as these.

On the other hand, labels are an effective method of communicating an entire set of information.  It would be cumbersome to have to explain to someone, “well, I’m hilariously introverted, I’m awkward around people, I’d prefer not to stare into your eyes or have you stare into mine, you’re probably going to take something I say the wrong way, I’m really good at remembering detailed minutia and connecting weird concepts together, and I’m super-honest without thinking.”

On the other hand, it’s much more efficient to tell someone I’m Aspergian/autistic.  But it only “counts” as more efficient if indeed the single-word labels send the same message as the long, drawn-out description would.  A label is only as good as the recipient’s perception of it.  Without an accurate impression, the label fails.

The Asperger’s and autism labels fail, too.  “Aspies” are often perceived as distant, aloof, and off-putting geniuses who spend all day tinkering with electronics (especially computers) and hide behind the Asperger’s label in order to have an excuse to be a geeky asshole.  “Classically autistic” people are often thought of as those who stare, rock back and forth, never speak except to scream, and flap their hands all the time.  (Hell no, I don’t agree with any of this–I’m just the messenger of society’s (erroneous) messages here.)

While labels are effective and efficient, they’re also potentially fertile ground for misconception.

The answer to the riddle, of course, is to increase not merely lip-service-like “awareness” but true knowledge and acceptance among the general public, so that labels can freely be used without the (highly-justified) fear that they will be misinterpreted by the uninformed.

I might be Aspergian, and I’m also rather personable.  Although I like technology just fine, it seems to hate me, so I’m definitely not a tech geek.  I might be autistic, and I also love to be hugged and touched, and I was pretty verbose by the time I was two and a half, maybe three.  I’m a married, self-employed adult, who, most of the time, can sit somewhat still.

I do resent those who hijack terms and labels, presenting a slanted, biased view of people on the Asperger’s/autism spectrum.  The stereotypical views are sprinkled throughout mainstream consciousness, without anyone having given us the opportunity to counterbalance the equation through the telling of our own stories.

The Asperger’s/autism spectrum isn’t a spectrum so much as it is a mosaic.  All of us occupy a unique and distinct spot.  If any one of us is subtracted, that distinct piece is gone, and the entire mosaic changes; it’s not ever quite the same.  Each of us is plotted along Asperger’s/autism spectrum, claiming our own individual place on it that is our own and no one else’s.

I dream of a world in which to say that one is Aspergian/autistic conjures up accurate imagery.

I long for a place and time in which someone can disclose their status and be met with acceptance, support, or even a neutral indifference.

I’d like to build a society in which the use of the “autistic” term does not ignite fear and apprehension.

I would love to see a culture in which to tell someone you’re on the spectrum doesn’t change the other person’s perception of you or how they treat you.  A world in which to say you’re autistic isn’t followed by being treated with skepticism or talked down to.

I yearn for the ability to be able to come out to my clientele at work as an autistic doctor without fear that they’ll freak out and find another doctor.

It would be nice to say, “I’m autistic”, without people suddenly adopting the expression that seems to communicate very plainly that they’re suddenly on edge, wondering when you’re going to break out into some kind of meltdown, outburst, or hand-flapping.

It would be nice.

Although that might not be the universal case at this time, the truth is that such a world might just be within reach.  Inroads are under construction as we speak.  Inroads get engineered, built, and traveled every time someone reads a book like “Neurotribes”, “In a Different Key”, “Aspergirls”, “I am Aspiengirl”, “Thinking in Pictures”, or “The Autistic Brain”.  We inch closer every time a parent declines ABA therapy or some other ineffective, potentially traumatic “therapy” for their child.  More inroads are built each time an adult suddenly discovers that they, too, are on the Asperger’s/autism spectrum.

Maybe someday, the Asperger’s/autistic label may come to be viewed in a positive light, maybe even as a sort of compliment 🙂

***

This is one of my more popular posts!

❤

❤

❤