Autistic Hedgehog

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Posts tagged with "functioning labels"

Rebloggable by request

You type on here with such perfect grammar a large vocabulary and very well educated. By reading your posts you don’t sound like you have autism. I recently worked with kids in year 6 who had autism and not one of them in the class could read or write beyond the level of a preschooler/kindergarten. I guess what I’m asking is how this all works?
 Anonymous

*deep breath*

I’m going to try to answer this without exploding. Try. Because if you’ve actually been reading my posts and, you know, absorbing them, I shouldn’t need to answer this at all.

I think I’ve said on here about a thousand times that autistics are all different and that functioning labels are meaningless. But let’s examine why I might be so different from the small handful of autistic children you know. Since clearly “I am not them” is not a satisfactory answer for you, let’s try some sordid details instead.

(For my Hedgehogs: Trigger warning for ableism, bullying, abuse, suicide and rape.)

Oh, I suppose not all of it is sordid, as such. I wasn’t diagnosed until I was nine. Although I’ve had an ADHD diagnosis practically since I was in the womb, and my mom always felt the doctors missed something about me, no one acted like I was a useless shell of a person who would never amount to anything (that came later). It wasn’t assumed or expected that I couldn’t learn to read, couldn’t learn to write, couldn’t be a well educated individual. Hell, my mom started teaching me to read when I was about three (though admittedly this could be so she wouldn’t have to suffer through Kittens Are Like That again). When I developed my first special interest and started reading books on horses all the time, no one tried to stop me or scold me, because reading was good.

Perhaps these kids you’ve worked with never had those benefits. Perhaps people always treated them like they would never be worthwhile people, like they couldn’t learn to read or write anyway so why bother teaching them? Or perhaps it’s just not their strength. You see, it is mine.

I’m a writer and I’ve been writing for fifteen years, but I’ve always had a particular knack with words. When I was tested in sixth grade, I was found to be four years ahead of my reading level (which was probably not even fully accurate since I was already reading novels for adults at that age). For my entire life I’ve known words—known the meanings to words—that I’d never even heard before. “The world is made up of the greatest composition of numbers and letters.” I said it when I was…four? Five? I couldn’t have been more than six when I once described myself as “feeling like a pile of used up rags.” 

You see? When people talk about autistics with special talents, they think of doing large sums in their head like Rain Man or being able to play a song on the piano after hearing it only once. But my gift, my talent, is words, communication. I don’t communicate well in spite of my autism, but because of it. 

But I mentioned sordid details, didn’t I? And really, the good is nice, but I’m not me without the bad.

It’s funny you should call me “very well educated” because I’m not; not in the typical sense. My world started going to hell after my father committed suicide. By the time I was twelve, I was being viciously bullied in school. I was cornered and hit in the locker room, I was surrounded and harassed at my desk, I got rocks thrown at me on the way home from the bus stop. I didn’t know it for some time, but the other students ganged up to tell lies about me, accusing me of being the bully, telling teachers I called them names and swore at them (I never even swore when I stubbed my toe, back then). I can remember sitting and listening to the lies, opening my mouth to defend myself and being shushed, viciously, by my so-called guidance counselor. 

No one believed me. Even I didn’t believe me. I have one of the sharpest, longest memories you’ll ever encounter, and I spent years thinking I was going out of my mind, because I couldn’t remember any of these things I supposedly did. And I hate talking about it, because people don’t like to believe that children can be that horrible. But they can and they were, and I was surrounded by adults who saw my difficulties expressing “proper” allistic emotions as proof I was lying. Adults I couldn’t look in the face because I could never trust them.

I was home-schooled part of the year in both 6th and 7th grade, and for all of 8th grade. Despite that, I tried going back to school for high school. My education was never steady or stable again. I couldn’t stay full days—by the end of the day I couldn’t breathe from the panic—and I missed a lot of classes. Much of my “very well educated” comes from educating myself. And while all this was happening, when I was only fifteen, I was lying still while my boyfriend raped me, because I’d been so lonely for so long that I was terrified of losing him and the friends he’d brought into my life. I spent years feeling like a stupid little girl who should have known better than to let him do that.

But like I said, I educated myself. And not just in terms of writing or reading or anything else. I educated myself in you. In allistics. I learned to read you better than you can read each other—but even so, I rarely trust my own judgment. I ought to, but my instincts have been so battered by the years of abuse that I can’t. Give me time and I can learn people, learn how they’ll react in a given situation better than they know themselves. And I know me. I spent hours upon hours in introspection, being far more brutally honest with myself than most people will ever be. I know how I act, why I react, why things hurt me…and I’ve put it all together to decode the world. To survive the world.

Do you know how exhausting it is to never be able to let your guard down, ever? To always have to study people, to actively read their non-verbal language, to vet every single thought that comes through your head to make sure it’s not offensive, and to have to do it all at the speed of thought? To smile and look people in the eyes—or fake it—even when you don’t want to? Because that’s my life. I communicate well now verbally too, but I didn’t always. It was only when I was writing that things always fell into place, that I got it right, that I was on the same wavelength as other people. Only when I’m writing that it’s not another long, drawn-out battle to appear just like everyone else. 

That is how it works. How it works it that we’re all different people, but we are people. We’re not empty husks who live our lives unaffected and unchanged by the world around us. Oh, it affects us, all right. It changes us. For many of us, it stuffs us into a box and then praises us while we huddle there, cramped and in pain but doing what society thinks is “right” and “acceptable.” Others are dubbed such worthless lost causes that there’s little point in trying to shove them into the box, because they’ll never go in anyway. Very few people ever care to see what happens if they try to adapt to us instead. 

Apr 6

Made rebloggable by request

What do people mean when they say ‘mild autism’? When is it classified as 'mild’? Because, I can’t dress myself or feed myself, or do a lot of other 'basic’ tasks but people keep telling me I must be really 'mild’. Is it because I can speak? Is it because I’m funny? Is it because they’re assholes?
 Anonymous

That last one sounds about right.

“Mild” autism, like “high-functioning” autism is an expression of ignorance and at times straight up hatred. It’s an allistic classification of us based on what they assume we’re capable of, and has nothing to do with the realities we face in our day-to-day lives. And sadly, it’s used against us by many of our so-called “allies,” by people like Autism Moms (*gag*) and just assholes who want to dismiss us. 

Some people may come across more high-functioning in your average social situation, but have other struggles. Some may function fairly highly across the board. Some may be able to make their own phone calls but be pretty much unable to speak to someone face-to-face. We’re all different, and we all have our areas where we’re strong, areas where we’re weak, and areas where we succeed sometimes but not all times. “Mild autism” is a completely meaningless term.

It may be that some of these people are trying to compliment you (I don’t know the exact circumstances you’re hearing this in). But even so, that’s patronizing, ignorant and offensive. And worse, these distinctions have been divisive for autistics in general. It pits us against each other, both by encouraging some of us to believe that we’re better than others, and by telling us we should shut up because we don’t have it as bad as others. No matter someone’s intentions, using the term “mild autism” is just wrong.

tl;dr version: If someone uses the term “mild autism,” this can be translated as “I don’t actually know the first thing about how autism really works.” 

Apr 4

To be honest, I thought that Christian Chandler (Yes; I did mean the one who was in charge of Sonichu.) was the only one high-functioning autistic that hated the low-functioning ones.

Sadly, society encourages “high-functioning” autistics to hate or at least be ignorant about “low-functioning” autistics. Anyone perceived as high-functioning will be praised for their passing ability (“I hope my child is just like you someday”) and told they’re not like “low-functioning” autistics. If they don’t know anyone considered low-functioning, it’s hard to know what the differences are and are not. Like many things, it’s a problem on a deep, societal level.

I still haven’t quite figured out how to deal with people who believe Asperger’s Syndrome isn’t autism. It was never presented to me as anything but autism by the people who diagnosed and treated me, and I can’t understand how the idea got out there in the first place (but would not be the least surprised if Autism Speaks is somehow partially responsible).  

Apr 3

How do you deal with autistic people who wouldn't want a cure themselves (because they consider themselves "high-functioning" or whatever) but want to "cure" other autistic people (e.g. their "low-functioning" children) and stop vaccines etc? I've always struggled with responding to that sort of argument, even though I know it's wrong on so many levels. :/

Anonymous

Unfortunately, there may not really be a good way to deal with these individuals. Whatever the reasons they got into that mindset, they need a certain level of insight and introspection to get out of it, and you can’t necessarily give that to a person.

The best you can do is try to explain why these ideas are problematic. Functioning labels have extremely limited meanings. They’re used by allistic people in an attempt to describe and sort us, and thus lack nuance and connection to our reality. As well, “functioning” is defined by what allistic people think is right, so if someone can communicate just fine, but cannot do so by actually speaking aloud, they’re automatically dubbed “low-functioning”. This is regardless of how they feel in their day to day life and how they actually function in society.

As well, there are huge assumptions about what “low-functioning” individuals can and cannot feel, based solely on the fact that the don’t meet an arbitrary definition of “normal” in how they express themselves. Society (and groups like Autism Speaks) works overtime to reaffirm these ideas, to brand them on the minds even of autistic people. Thus comes the assumption that “low-functioning” individuals wouldn’t be able to decide for themselves if they wanted a cure anyway, and that’s unfair. No matter how “high-functioning” anyone might be, they wouldn’t want anyone making those kinds of assumptions about them, and they have no right to do it to others.

Moreover, what would a “cure” even entail? Autism is pretty firmly entangled with our brainmeats. I doubt it would be possible to cure someone who is already autistic, which means things like in-utero detection and extensive gene therapy. Since it would be impossible to determine “functioning” level ahead of time (especially considering the meaninglessness of functioning levels in general) the only possible end result would be that autistic people wouldn’t be allowed to be born. Not even the so-called high-functioning ones. When “high-functioning” autistics support a cure, they think they’re safe because they’re agreeing with allistics, but in the end it’s allistics who have the real power right now. When we agree with them that a cure is necessary for “low-functioning” individuals, all we really do is let them take more power from us. 

The idea of autistic anti-vaxxers is a bit mind-blowing. But in the end, for the most part, there’s no reasoning with anti-vaxxers. They’re anti-science, counter-factual conspiracy theorists. No matter how many times you put the facts right under their nose, they won’t believe them, because those facts don’t support their bias. The Panic Virus by Seth Mnookin is actually pretty useful for understanding how their attitudes have come about (but a warning, Mnookin has his own misconceptions about autism and some of the language he uses is upsetting).