Autistic Hedgehog

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Hi. I just saw the answer you wrote to the person who said that you don't seem like you have autism because you're good with words. Your answer was one of the most amazing things I've ever read. I also admire how you kept composed, when I would've totally blown up on them. Cheers for that

Thank you. :) I’m actually not entirely sure how I kept my composure. I honestly wouldn’t blame anyone for blowing up in a situation like that.

[“My son has autism but he’s not autistic!”
So does he keep it in a jar on his shelf or something?]
No, I’m not kidding or exaggerating. This is the sort of shit drifting around the autism tag right now. Rhetoric like this. 
This is why “person with autism” is such problematic language. Some parents try to defend it with claims that it’s because they see their child as a person first WHARGARBL. I suppose there’s something to be said for this person’s honesty. 
Please note that I’m not saying autistic people shouldn’t define themselves as “people with autism” if they so choose. But allistic people have no right to dictate what language gets applied to us. Whether they realize it or not, when they talk about “people with autism” a part of them is trying to separate autism from person, as if autism is some parasite that has taken up residence in their child’s body rather than a very real part of their child. 
This is a genuine–though slightly paraphrased–quote from a person who honestly believes having autism and being autistic are two distinct things. That attitude is vicious and harmful, so when you see autistics speak out against person-first language, know that this is why. 

[“My son has autism but he’s not autistic!”

So does he keep it in a jar on his shelf or something?]

No, I’m not kidding or exaggerating. This is the sort of shit drifting around the autism tag right now. Rhetoric like this. 

This is why “person with autism” is such problematic language. Some parents try to defend it with claims that it’s because they see their child as a person first WHARGARBL. I suppose there’s something to be said for this person’s honesty. 

Please note that I’m not saying autistic people shouldn’t define themselves as “people with autism” if they so choose. But allistic people have no right to dictate what language gets applied to us. Whether they realize it or not, when they talk about “people with autism” a part of them is trying to separate autism from person, as if autism is some parasite that has taken up residence in their child’s body rather than a very real part of their child. 

This is a genuine–though slightly paraphrased–quote from a person who honestly believes having autism and being autistic are two distinct things. That attitude is vicious and harmful, so when you see autistics speak out against person-first language, know that this is why. 

I just wanted to let you know that you are a beautiful and strong individual, ok? I think you are brave and amazing, and that you deserve a big hug. -me and my classmates

Anonymous

Thank you. :)

You seem to be very knowledgeable about autism so I was wondering if you could help me disabled representation in general? My... I'm not sure what the term for it is? Well-bodied? My well-bodiedness leaves me ignorant even though my boyfriend has aspergers and I really don't want to be offensive at all, I really just want to learn and bit and I wonder if you'd be willing to lend me your ear. If not its totally 100% okay and I don't want you to think I feel entitled to your teaching.

Just for reference in the future: I know some people don’t like to answer questions, and it can be tiring to educate others, but as long as I’m approached politely, without prejudice or assumptions, I’m always willing to answer. Having weighed it against the alternatives, I’ve decided I’d rather answer a thousand questions than let groups like Autism Speaks answer even one

It’s really good that you want to know more. I’ve dealt with a lot of significant others who couldn’t be arsed, and it’s very disheartening. For starters, I actually answered a question about advice for dating autistic people about a week ago, with some basic tips, which you can find here. It’s sort of “Dating Autistics 101.”

Anything else you want to know, I’ll do my best to answer (and some of my fellow hedgehogs may chime in too, if they’re feeling like it). Since you care enough about your boyfriend to ask in the first place, I’ll do my best to help you learn what you need to know. 

The anon who left a message about the neurologist reminded me of a therapist I had long before I started reading into Aspergers/autism; he would always tell me that everyone struggles about the things I wanted help with (like social problems especially). And I guess he meant that to be comforting, but to me it always just sounded like "Your problems will never get any better" - or else like he just didn't understand what I was trying to say. He was not my therapist for very long.

Anonymous

Curiously, does anyone else get triggered watching movie/tv shows with autistic characters? I watched Temple Grandin when it first came to DVD, and I struggled to breathe (that happens when I have a sensory fit).

Anonymous

That’s an interesting question. I haven’t watched anything with characters that are acknowledged in canon as autistic, or about real autistic people, so it’s not one I can really answer.

Anyone else? 

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. 

Just read the articles you linked to about autism in France. It's horrifying. Incidentally, I've got an official Asperger's diagnosis, and a year in Paris as part of my degree. Eeeeeeep.

Yikes. o.o Just make sure you do whatever you need to in order to keep yourself safe. Hopefully it won’t be too bad, but France definitely doesn’t sound like a haven of understanding and acceptance. More like a hive of scum and villainy. 

Something I've genuinely just seen on Twitter: "Dental mix-up leaves autistic man with no teeth *link to the news story* Adults with autism cause problems everywhere" WHAT?! Victim-blaming much?! Urgh. :(

Anonymous

(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. 

 

Can never tell if I'm an "autism mom" or actually autistic. Both my sons are diagnosed on the spectrum, but I had no concept of autism before their diagnoses. My husband and I both feel like we are too, and that we were drawn to each other through that shared acceptance of being different. But we have learned to "pass" as neurotypical? I figured out what facial expressions meant I was hurting people's feelings when I was about 25. He doesn't speak much. Etc. I can pass. He can pass. (cont)

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.