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!

 

Advertisements

50 Comments

  1. Such a wonderful post. So much to chew on. The line for us that resonates is “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.” How beautiful a thought this is and one we too long for to deeply. Sadly though I think we’ll only find it when we leave this earth but we must strive to obtain it here by efforts like yours and ours. How we walk and talk is the actions we hope others will follow.

    Liked by 3 people

    1. Amen, luv! Thank you so much for your lovely words 😘❤️

      I’m what I call a “jaded optimist” lol – I’ve read that it comes part and parcel with the INTJ Myers-Briggs type 😊. I think it’s possible that we may see a shift in our lifetime; the world moves much more quickly in terms of the evolution and dispersal of ideas, and tolerance and acceptance are blanketing the world at unprecedented rates. But yeah, we still have a long way to go yet 💜

      Liked by 2 people

        1. Awww thank you 😘. Letting go is the best! It’s like hang-gliding; drifting with a purpose and getting a very scenic view ❤️

          Liked by 1 person

  2. Spot on! Everytime I see someone railing against labels I find myself thinking “Sure, I see your point, but labels are useful tools. How can possibly communicate without them in some form?”

    Labels are tools. Neither good nor bad. It’s how they are used that is in question.

    Liked by 3 people

    1. Exactly! 👏🏼👏🏼😊. Labels used as a put down are a no-go for me, but when used correctly, they’re awesomely efficient ❤️

      Liked by 2 people

  3. Absolutely spot on. I think I’m coming to a level of self acceptance now that suits me OK (I do have occasional dips, but mostly I’m Ok), but I’m very concerned about being too “out and proud” for exactly the reasons you’ve so eloquently discussed here.

    Liked by 1 person

    1. Thank you luv! 🤗. Yep, I admit I was a little (perhaps a bit excessively) out-and-proud ❤️. In a way, that’s probably a good thing, because it provides an opportunity for other people to learn what autism really does (and does not) “look like”; they can now say, “hey, I know someone who is autistic” and now they can form their own impressions and opinions. But the thing is, once you’ve disclosed, you can’t *un-*disclose. So if the person shies away from you or says something that doesn’t sit well, that can’t be undone and unheard, either 😊. It’s all a balancing act, using good judgment (which isn’t always my strong suit lol), and so on, isn’t it? ❤️

      Like

      1. My biggest problem is the workplace. So many people where I work are related, so it only takes a comment over the dinner table at home, and a snippet of misunderstood information passed on, and step by step it can get to people I’d prefer not to know. It’s my label, and I think it’s my right to retain control over it. If I disclose to one person, I can explain and they’ll see me and know what autism looks like. But once they pass it on, the Chinese whispers can start and several steps down the line it’s become something quite different. Until everyone understands what the label of Autism means, accurately, in all the various and glorious colour combinations of our spectrum, I feel the need to hold that label close to my chest. Labels can be very useful short cuts, but only if the information held by that label is widely known and understood. Things are improving, but 7 months ago I was one of those unintentionally ignorant people who misunderstood, which contributed to my trauma at finding myself “on the spectrum”. I’m autistic and I misunderstood the label before I knew that this is who I am, so I’m thinking the vast majority of NTs will also misunderstand. It’s not their fault, but it is the way things are in general society at this time in history. I hope I live long enough to see a real difference.

        Liked by 1 person

        1. So true, my friend ❤️. Once the cat is out of the bag, the ripple effect is beyond our control 💙

          Like

  4. “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”

    PREACH IT SISTER. PREACH IT. I’m legit crying right now. This has got me in all the feels. I look at all the aspie/autistic people that I follow, and I read about everything they’ve done. and all I can say is how do these stereotypes still exist? WE ARE ROCKING THE WORLD, and they can’t see it! Thank you Laina for breaking the barriers, breaking the mold that has been inaccurately portrayed for years. From one aspie to another, I love what you’re doing 🙂

    Liked by 2 people

    1. Omg my man, all I can say is YOU FREAKING ROCK ❤️❤️. Thank you so much for your amazing words of support; I can’t express how much they encourage and inspire. Peace and love to you – lots and lots of 😘💜💙

      Liked by 1 person

        1. Omg omg thank you!! I can’t tell you how incredibly touched I am by your encouraging, loving comments and the generous reblogs 😊❤️. I’m honored to be among those you reblog, because I must say, I’ve met some amazing blog writers through your blogs. You rock, dear friend! Keep on kicking ass, head held high. You’re an incredible soul and I just wanted you to know that 😘💖🌟

          Liked by 1 person

    1. Aww thank you so much, Sister 😊❤️. Always always reassuring to know that there are others of like minds out there 😘💜

      Liked by 1 person

  5. I think part of the reason the stereotypes are still believed is because most of the information was coming from parents or “experts”. It’s really awesome that so many ASD adults are putting the *real* info out. The focus really does need to be turned away from the parents. It *is* difficult but so is raising any child. I’m always spreading the info (blog post coming soonish😕) about ASD & encouraging folks to follow ASD adults if they want more info. You, with this blog, are ultimately making thing better for Ben’s future👍😘💞 Plus, you’re just totally rad😎!💗

    Liked by 1 person

    1. Oh wow, that’s too cool!! It’s really really neat to know that the voices of the Asperger’s/autistic community are being heard in a way that not only helps the adults on the spectrum, but the kids, too! Because they have a lot of tomorrows yet, and formative ones at that! 👍🏼💖

      April will see quite a few more blog posts that speak more to specific segments of the non-autistic world (but only segments of course, not necessarily everyone who is non-autistic), in the spirit of autism awareness month. I’ve been writing them as unpublished drafts/outlines/ideas throughout the year and saving them up lol 😉💚💙💞

      Liked by 2 people

  6. Once again, I totally agree. There are indeed good sides and bad sides to the label, and you never know what stereotypes come to people’s minds when you say “autistic”. This is probably the reason why I don’t advertise my blog on Twitter, because there are people following me on Twitter that I don’t even want to know about the questioning. Not because I know these people are prejudiced, only because I don’t know what they are going to think, and I don’t want things to get out of my control.
    By coincidence, I’m preparing a post on why such a label would mean something positive for me, which I’ll hopefully post in a couple of days.

    Liked by 2 people

    1. Wise strategy 😊. Especially since we don’t have much influence over how people might react, nor do we really know what kind of impression someone might have of the term 😊

      I’m looking forward to your blog post! I’d be interested in hearing your thoughts; a few people talk about the pluses and minuses of labels, but I haven’t seen too many, so your perspective would be refreshingly welcome 💜💓

      Like

  7. One thing that holds back societal progress are functioning age labels (stating an adult “functions at the level of” a child or teenager). Just because autistic people may do things differently, get a job, marry, or have children later than their NT peers, does not make Autistic adults any less adult. We Autistic people are our own culture.

    Liked by 2 people

    1. Absolutely 👏🏼👏🏼. Wholeheartedly agreed! I don’t like “milestones”, either. Each individual should be free to develop at their own pace without being examined under a microscope ❤️

      Like

  8. “Mosaic” – I love this! Even better than “spectrum”. Only two and half years ago, when my husband (having read a great post on Quora from the parent of an autistic child), said to me that he thought the problems we were having with our youngest were because he was autistic, I was vehemently opposed, knowing only the Rain Man, and locked-in type stereotypes of autism. It took a couple of months before I would reluctantly entertain the thought of Asperger’s. But he was right – we’ve just had a diagnosis of severe (although high-functioning) Autism for our youngest (because Asperger’s is no longer used for diagnosis in the UK) and our middlest seems to be going the same way. And the investigations we’ve undergone have thrown up some interesting and sometimes uncomfortable revelations for our eldest, and myself and the husband as well (I hear that’s very common…)

    In our household, we found the label empowering, and the children especially find it useful – they (all of us actually) no longer feel different and excluded for no reason, but they know who they (we) are, and why, and that it comes with challenges and unusual talents, and possible opportunities. In short, we’re all just more comfortable… but telling friends and family can be hell.

    Liked by 1 person

    1. Thank you so much for your comment!! 😊. You’re awesome!! ❤️. That’s so cool that the discovery and the term have been empowering for you 🤗. Being more comfortable is golden. As for the rest of the family, meh; they’re a challenge for sure, I’d never discount that. But you got this, and that’s what counts 😘💞

      Liked by 1 person

  9. “A label is only as good as the recipient’s perception of it.”

    OMG that is so amazing.

    I have so many traits that match “classic autism” (as parents call it). First off, I’m a woman. I wasn’t diagnosed as autistic until I was 15 in 1995 because “girls don’t get autistic!”

    My ability to speak, dress myself, bathe myself, use the toilet, pretty up to look nice for special occasions, go to church and sing in a church choir magically makes me “too high functioning” for it to matter.

    I live with my parents because I can’t life independently and be safe. I have the executive functioning skills of a rock, so I can’t cook anything more complex than a grilled-cheese sandwich and a lot of multi-step tasks are a struggle. Sometimes I need outside prompts to do things like make my bed or clean a room. I have violent self-injurious meltdowns. I can’t handle a work environment and am on disability. I can’t drive because it’s too much sensory input plus I get distracted easily, so I’m not road-safe. My sensory issues fluctuate. I’m always balancing between understimulated and overstimulated, which means frequent, visible stimming. I totally fall apart if my routines are disrupted. My meltdown threshold goes down the tubes if I’m sick, on my period or didn’t sleep enough, so everything and anything can set me off into crying, hitting myself or screaming.

    But meltdowns aren’t the totality of my life.

    I’m funny. I’m a dorky, geeky nerd and don’t pretend I’m anything but myself. I use echolalia to communicate almost as much as I say my own things. Lately I’ve been mumbling “trash panda” or saying “I am Groot” and randomly yelling “I’m Mary Poppins, y’all!” thanks to Guardians of the Galaxy vol 2, lol! I line stuff up, I make jokes about my literalness, or I take things literally on purposes to mess with people. I’m always playing fandom association with life, and anything that reminds me of a fandom I love tends to make me produce echolalia from said fandom. Sometimes I just have to say the phrase or word to get it off my brain so I can get on with life. (But it’s funny 99% of the time, so I don’t mind.)

    I’m an antibullying activist because I was bullied so badly in jr high / high school that I attempted suicide when I was 16. I share videos of my stimming, my meltdowns and vlogs where I explain aspects of autism that you’ll never hear from “experts” who only study it. I’m not ashamed to share my meltdowns– at least I’m choosing to. I’d rather people gawk at me instead of a child or adult who has no choice in the matter. I share the ugly and the pretty because people who only accept the pretty and shun the ugly don’t really accept me.

    I’ll turn 37 in July. I don’t do a lot of what people expect of a 36 year old woman, and I’m not sorry that I didn’t meet someone’s arbitrary societal expectation of normal. I ain’t normal, I’m weird!

    I understand a hell of a lot about what nonverbal autistic people go through. I’m just like them, except for some reason God decided I should talk, so I talked at the “proper” age. Most of my childhood speech was echolalia. I was just like Julia on Sesame Street. Maybe God made me talk because He wants me to be a voice. I think I’m doing Him proud. (I’m Catholic btw.)

    I warned my church choir about Autism Speaks and how autistic people capable of understandable communication can tell you what being autistic is like and that we should be listened to. They went REDInstead for me on April 2 this year since it was a Sunday, and it was awesome. I still get misty eyed thinking about it.

    I’ve had three people in my church choir seek my advice about behavior and sensory stuff after learning kids in their families were diagnosed as autistic. I always explain the harm of functioning labels and why “my child is autistic” is a complete sentence and to wave off anyone who asks “well are they high or low functioning?” because those don’t exist. They used to be a medical label, but stigma has twisted them into something harmful.

    One of the main things I told them is kids are not as experienced at driving their body as an adult is. It’s like the Doctor after regenerating on Doctor Who. He goes a little bit bonkers and is confused for awhile. It’s almost like a post-ictal state.

    Autistic kids need to figure their bodies and brains out just like adults have to figure a new car out. After awhile, you know all its silly little quirks and what to do about them.

    For example: I don’t always react visibly to a painful stimulus because I understand it’s not actually injuring me. A small kid won’t know that, they feel pain and pain is scary! Now, I still will plug my ears, make noises and freeze or run away if a painful noise is overwhelming. That’s just me listening to my body saying “get me the F out of here until that stops!”

    Little kids don’t realize their body is talking to them, they just know it hurts and they have to get away. I believe in teaching them about what is making that scary noise or whatever unpleasant stimuli because understanding helps wipe away fear. They might still hate it because it bothers them, but at least they will grow to understand it’s not going to injure them and their reaction is their body being sensitive to that thing. (Well, most things; it’s a different story for dangerous items like cars, guns, knives, etc…)

    Something else I told these choir members that autism is not a horrific affliction and don’t listen to anyone who says it is. I warned them about how utterly illogical antivaxxers are and warned them about so called “cures” like bleach enemas and the like. The people who spoke to me were gobsmacked by how much knowledge I had.

    Speech doesn’t come easy to me. I stumble, repeat words and struggle to state a simple point simply. My brain does gymnastics for every syllable I speak, so it’s work to talk. I’m clearer in writing. But my speech struggles make people think my brain is as simple as my mouth. HAHAHA, my mouth is a stick figure, my brain is the Sistine chapel. Sometimes I can get my knowledge to come out if someone is patient enough to listen and sift through the way I talk when I talk at length. And these choir people did that. They listened even though I took forever and they realized there’s a lot more to me than they thought. I wasn’t offended by them saying that– I killed a stereotype right before their eyes. They were grateful.

    And that makes it worth it. Erasing stigma one person at a time means eventually it’ll get wiped out.

    So to anyone who read all this babble, I just wanna say the OP of this entry made an excellent point. Everyone should listen.

    I’M MARY POPPINS, Y’ALL!

    Liked by 1 person

Please feel free to add your thoughts!

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s