Autistic Hedgehog

(Context - That tweet is from an aspie who’s anti-vaccine and pro-cure. Not for HIMSELF, obviously, just those *other* autistic people, like his son. AAAAAAAARGH)

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Well, that’s just icky all the way around. 

What makes it really gross is that I did a little poking around and it turns out there have been other reports of the dentist in question pulling out too many teeth and being overall shitty as his job, so the autism of the man in question had absolutely nothing to do with it. Wonder how the guy who made the tweet would feel if people talked about him like that, in such a situation. 

But where do we put ourselves in discussions of autism? We don’t plan on getting diagnoses. We are greatly helped by our kids’ therapy in dealing with our own sensory issues (now I understand my avoidance of certain lights and noise, needing to rock myself to calm down, etc). Would I offend someone with an actual diagnoses if I was both an Autism Mom and referred to myself as autistic without a diagnosis?

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Well, those who refer to themselves as Autism Moms (with capitals) are a somewhat specific group of people, and they can be a problematic bunch at times. That doesn’t mean you can’t identify as an Autism Mom if you so choose; just be aware that some autistics may have had bad experiences with them.

In fact, one of the big problems with Autism Moms is that they’re usually not autistic themselves, and autistic moms easily get excluded by them. 

Generally, you’re going to find both autistic people who don’t mind self-diagnosis and those who do (you’ll find a fair few of the former here on Tumblr), and it’s in part a matter of finding the group that accepts how you choose to identify. As to where you put yourselves in discussions of autism…some of that is up to you and what you feel comfortable with. You may feel comfortable participating solely as the parents of autistic children, solely as autistic people, or as autistic parents. It might take some time to figure out what suits you.

And what you feel comfortable with might change, as well. As time goes by and you gain more knowledge and experience, you might find yourself feeling more comfortable and confident in other areas of discussion. That’s okay too. 

*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. 

To be perfectly honest with you, unless you feel you really need it, I would not recommend getting an autism diagnosis in France. I decided to do a bit of research of the matter and holy crap. 

I suggest you read this this and this. (Trigger warning for abuse, ableism, just all kinds of horrific fuckery.) I don’t think an official diagnosis would be much benefit even if you could find someone competent enough to administer it, and if you did, it sounds like something that could be detrimental and perhaps even dangerous to you. 

I’d suggesting research and self-diagnosis instead, unless, as I mentioned, you feel you really need a diagnosis. Right now France doesn’t appear to be a pleasant place to be autistic. 

I actually had a very similar experience with my psychologist a year or so ago. He liked to talk about how I was “hardly autistic at all anymore” and, when I talked about things like being overstimulated by a crowd, he would insist that all people experience such things.

It frustrated me so much. I know he thought he was saying something positive, but for me, he was dismissing the realities of my life. He was dismissing all the hard work I’d done and the bullying and ableism I’d suffered to seem “hardly autistic at all anymore” when they’re so relevant to who I am. He was dismissing the pain—real physical pain—I feel from the presence and noise of large crowds of people and the panic I feel when I have to get on a crowded bus. He was dismissing the sense of hyperawareness I developed from those years of bullying and ableism, that makes me freak out when I trip in public, that makes me assume a crowd of people laughing nearby is laughing at me, that terrifies me when I get something on my shirt because I’m positive that people will notice and think I’m a slob.

It sounds like this neurologist evoked similar feelings in you, and you do have a reason to be upset. No matter how “high-functioning” you might appear, that will never erase the problems you had and do have.

But when she talked to you like that, I’m guessing it made you feel like she was erasing and dismissing those things. To people like neurologists and psychologists it might seem like being called “normal” is a reassuring thing, but it’s very easy to hear as “There’s nothing wrong with you, so what are you even complaining about?” It’s easy to feel like someone is telling you that you should be fine and perfect and any troubles you have are overreactions. That would make anyone feel uneasy and insulted. 

There’s no such thing as pointless whining over ableism, and in the end, that’s what it was, regardless of her intentions. 

I don’t see why not. Like you said, it’s a repetitive hand motion that relaxes you and keeps your mind off the stimuli around you. Okay, unlike many stims you could potentially make some profit off it on Etsy, but I don’t think that really disqualifies it. If it works for you, it works. 

Not really. Because you’re autistic, it’s pathologized and a lot of people will think it’s weird. But they’re hypocrites, because they wouldn’t bat an eyelash if an allistic person, say, confessed that they didn’t leave their room or shower for days while they were working on their thesis. It’s one of those things that potentially anyone could do, but it’s only seen as a sign of something wrong in people like autistics.

Do try to remember to eat and get some sleep, though. I know it’s not always easy when one’s distracted by something they enjoy, but I’d hate to see anyone wind up sick.

(Please don’t ask me how someone who has as little maternal instinct as I do ended up such a freakin’ motherhen, because I really don’t know.)