And now for someone completely different

(If you like long controversial posts this is your lucky day.)

Hi, yes, it has been over a month since I last posted. I promise posts about the A&S competition will be coming soon. But today I’m completely leaving behind my usual categories, because today is almost April, which some people call Autism Awareness Month. Except “awareness” (besides being a nonsense word as far as I’m concerned) has to do with diseases (like the current plague), and autism is not a disease. Actual autistics call it Autism Acceptance Month, because autism makes us different, being different is not a bad thing, and it’s about time “normal” people — in so far as the “normal” person exists — started accepting us that way.

If you’ve only heard of one autism-related organization, it’s probably Autism Speaks. Please read the link to learn more about what they’re really like, and support organizations which actually listen to autistic people instead of trying to turn them into normal people.

With that out of the way, what is autism actually, if it’s not a disease and not some affliction worse than death (and not caused by vaccines)? The Autistic Self-Advocacy Network has a good definition here with the seven general categories of characteristics. Each is a rabbit-hole of its own into which you could go down and down and down for ages — ask me how I know. Or don’t. According to those criteria I exhibit six and a half characteristics of autism, which for a definition that doesn’t require you have all of them in order to count, seems pretty conclusive. (Can you see why being shaped like that in a world completely not built for our ways of doing anything would be pretty anxiety-inducing? This will come back to haunt this post later.)

It probably comes as no surprise that I was a weird kid who grew up to be a weird adult. Ask my sister if you have any doubts. Being home-schooled back before home-schooling was cool probably didn’t help me be popular, but it did spare me a lot of bullying. In the age-segregated Sunday School classes at our first church (before I started going to the grown-ups’ class with my parents, which did not increase my popularity) I never got along with the girls, because they only ever talked about dolls and dress-up and tea parties (and later on, boys), and I never got along with the boys because the only things they could talk semi-intelligently about were cars and trucks, and they were loud and destructive and chewed with their mouths open. Nobody wanted to talk about books, which were about all I could talk about. And sets of parents would get together and introduce their similarly-aged children in the hopes that they would get along, and I and whichever girl had been picked for me would at once agree to go our separate ways with no hard feelings. I did have one friend, after a fashion, but a boy and not a girl. It was borne in upon me as I grew older, in that wordless way grown-ups have of communicating disapproval, that this was Not Normal.

My sister and I have always been very close, probably in large part because we have no other biological siblings, but also because even as we’ve grown up we’ve maintained that perfect balance of being like and yet unlike each other in all the right ways to make a good pair. But I’ve been told siblings aren’t the same as friends.

My dad suspected, when I was quite young, that I was somewhere on the spectrum, but wisely figured it would be a waste of money to find out for sure when that wouldn’t change anything. And while it would have been nice to know earlier on what was going on with me, I am kind of glad, because the only thing connected to autism that people knew about at the time was Autism Speaks, and the more I learn about them the more I’m glad that they never got their hands on me.

There’s a reason my hands won’t keep still and I see sounds all the time and I don’t get social dynamics naturally and eye contact is awkward and painful and I refused to wear tights or collared shirts from the earliest day I could express my opinion and why all the tags of all my shirts have to be cut out, and the reason for all of these is the same thing and the name of it is autism, and autism is also why I solve problems back to front and my working memory for things like mealtimes and where I put the car keys is poor because it’s filled up with facts like how to undo a zip-tie without cutting it and the social strata of England before the Norman Conquest and the influence Byzantine iconographical art had on the art of the Benedictine Revival and why the white degreaser spray which turns everything else white turns copper blue. And because I’m pro-life, I have to believe that even if I couldn’t do any of these things, if all I could perform in front of people were the downsides and not the advantages, I’d still be just as valuable as the next one.

Autism isn’t scary unless you think people being not normal is scary, and why should it be? God delights in making lots of different things with different abilities and points of view, and what’s weird in a penguin is perfectly normal in a jumping spider and neither has quite the same capabilities as a bat, but we don’t call any of them names because we understand that they’re not meant to process the world in the same way. So why demand conformity in human beings?

By the way, you may be wondering how I know about all this. Last year Jennifer Cook O’Toole published a book, part memoir and part science-of-autistic-girls, called Autism In Heels, and with no more knowledge of it than the fact that my dad once wondered, I checked it out. (It’s really easy to get books on a whim when you’re the first person to handle them when they come in.) And from the first page on I was astounded to realize that someone was writing about me. Synesthesia, this thing I thought everybody had until I read a blog post about it on a writing blog and realized almost no one does? Apparently that’s sort of a dead giveaway, at least in girls. Being completely blind to the unwritten social rules, and not understanding the need for or point of the written ones, and having to learn what seemingly comes by nature to normal girls (and why our friends are often guys, because they don’t get those rules either)? Just see the above paragraphs. Practically being an expert on a few obscure topics? If you’ve read this blog for any length of time you’ll know. Being thought of as “heartless’ or “inhuman” because we respond to emotions differently? That’s just us responding to our emotions differently! “Loud” hands? You mean that’s a thing other people have and it’s actually okay? Even necessary to our equilibrium? Wait, there’s a reason I get headaches regularly every Sunday afternoon at two o’clock * and this thing called sensory overload that I’d previously heard of is not unrelated to my synesthesia? (I mean it makes sense that if you experience every sensation twice over that it would have twice the usual impact on you, but nobody had ever mentioned this kind of math to me before.) And the chapter dedicated to the question autistics so often hear, “How Can Someone As Smart As You Be So Dumb?” could have been my biography. So then, as you do, I went down a rabbit-hole of research.

Researching — enjoying going down those rabbit holes and taking joy in seeing the connections between different things open up, and connecting previously unconnected things ourselves, whether through logic or a sort of intuition, seeing the picture all at once and not being able to explain it methodically — seems to be a common “strength” associated with autism. It’s also one of my “special interests” or obscure areas of expertise. And I doubt Dorothy L. Sayers had autistic girls in mind when she wrote Are Women Human? but this line makes so much more sense to me now:

“In fact, there is perhaps only one human being in a thousand who is passionately interested in his job for the job’s sake. The difference is that if that one person in a thousand is a man, we say, simply, that he is passionately keen on his job; if she is a woman, we say she is a freak.”

It turns out that even if Dad had decided to see about getting me screened for autism, I probably wouldn’t have been diagnosed. When autism was “discovered”, the scientist’s subjects were all little boys, and the official diagnostic criteria in most places are still based on boys’ traits, leading to more boys than girls being diagnosed, leading to the misconception that no girls have autism (or that fewer do), leading to no one seeing any need to revise the criteria. . .

Girls apparently put more effort into appearing normal, “masking” as it’s called, so they can slip under the radar for that reason, and everybody thinks they’re a little odd but pays no more attention to it. And meanwhile we tear ourselves up inside for years, feeling like aliens, often with the outer world confirming that suspicion, and no one knowing the reason for it. And then, you know, someone says “have you considered. . . ?” or you pick up a book off the New Nonfiction shelf at work and things begin to make sense.

But until then, all too often, we’re just the “weird girls”, who may or may not enjoy things we’re supposed to like (supposed by neurotypical people to like, that is), such as dolls or dress-up or tea parties or talking about boys. As Dorothy L. Sayers says in the same work, “What we ask is to be human individuals, however peculiar and unexpected. It is no good saying: ‘You are a little girl and therefore you ought to like dolls’; if the answer is, ‘But I don’t,’ there is no more to be said.” Unfortunately many people say a great deal more, with the result that at an impressionable age we consider the Venn diagrams of “things little girls do (or ought to do)” and “things I do (or like to do)”, and see how they hardly overlap, and conclude that we must not be little girls. Little aliens, perhaps? Little hobbits, maybe? No wonder we escape into stories in so many ways. We are the girls who get told “someday you’ll change your mind” and then grow up and don’t change our minds any more than we can or should change the wiring of our brains. And no one tells us at the time “these are the expectations for neurotypical people who experience the world a certain way; you are different, so it is to be expected that you will act differently and like different things, and that’s okay.”

Why should we not rather aspire to unity in diversity? Especially as Christians, whose God is the perfect example of unity in diversity, and who gave us 1 Corinthians 12. Surely he didn’t create us all different from each other only to order us to all act the same.

All that being said, while I won’t try to gloss over the difficulty that comes, not from being autistic itself, but other people trying to make me fit into a box I’m not made for, it’s very far from being all gloom and doom. Being extra sensitive means I get overwhelmed easily and that at work if I’m taking someone’s order and someone else is ordering in the background, the two voices may compete in my ears and result in me wondering if they really want a long john with pickles and caramel. But on the other hand when I go for walks outside I notice every cool thing there is, even the really tiny ones other people miss. There’s tradeoffs for everything in every area and it would take too long to list them all. I have loads of friends now and even multiple close friends — just check out the Adventures of the Motley Crew tag — and I’m fortunate enough to have made them while being weird (a lot of them are weird too, which is nice), fortunate enough to miss a lot of the pressure to turn myself into a person with a normal brain, and to resist what pressure I encountered. You can be happy and you can be abnormal both at the same time. Normal is boring, anyway.

Why do I bother putting this post up and telling you all something which up till now you might think has been irrelevant? It’s not just for my sake. If we never speak up about autism and what being autistic actually is like, the very vocal people who demonize it and find it easier to change the genetic code than to tolerate some oddnesses will prevail, and the people like I was a few months ago who knew maybe one stereotype or two misconceptions and that was it, will never realize what it’s actually like and some of them might never understand — as we have — that there’s an explanation for why they are the way they are, and it’s not because they’re a failure at being human. I don’t mind sticking my neck out to give people that. And maybe people who have been unknowingly cruel or something due to ignorance will learn something and be better in future.

Humans create the societies they live in, and they have the power to change those societies if they want to. We could change society to make room for different kinds of people instead of demanding that the odd ones put in the extra effort to reach arbitrary and irrational standards. In the case of autistics and many other neurodivergent people, the root of our differences is the structure of our brain. “Normal” people can bully and shame us into hiding our different tastes and behaviour so that we look like our personalities are just like the norm, but our brains and our selves will not change. I don’t see why that is a desirable state of things.

It is possible to order society differently. The SCA, perhaps because everyone in it is weird in one way or another, is great about making room for all kinds of differences, from the obvious things like getting wheelchair-accessible sites whenever possible, to encouraging or deliberately setting up quiet places. We do say with good reason that events are “a bunch of introverts getting together and making a lot of noise”, but I also wish to point out that at the A&S competition, when my turn came for judging, my judges asked if I wanted to leave the main room (which was very noisy) and go to a quieter, less overwhelming place where we could focus. Normally the assumption would be that the occasional person who doesn’t like noise is obliged to put in the extra effort for the sake of not inconveniencing anyone else, even if that means more than an inconvenience to them.  So it can be done, and it doesn’t always even cost that much. (And even when it does — which is more important, people, or the status quo? I’ll give you a hint: Christ didn’t become incarnate to preserve the status quo.)

Think I’ll be done being controversial for a few minutes. Come tell me what you think in the comments. I’m especially curious if any of you have been that weird girl and if you’re starting to see possible answers to those questions in anything I’ve written or linked to. It can be a little daunting to start putting yourself in the same sentence as a topic so feared and demonized and misunderstood, but it’s been delightful to learn why I do certain things and dislike others, from such a broad range of tastes and behaviours and experiences. It’s not because I’m from a nameless alien species. There is a name for all of this. I have a name, and a category, and a reason. Which is pretty much the best thing ever.

* When we have church, that is. I miss church.

About Nolie Alcarturiel

I enjoy practically anything to do with medieval history, including the domestic arts, with an especial emphasis on the Anglo-Saxon era. In my spare time I read endlessly, do medieval living-history, hold philosophical debates at the drop of a hat, and write books on even slighter provocation.
This entry was posted in Ordinary life, SCA and tagged , . Bookmark the permalink.

9 Responses to And now for someone completely different

  1. Christine says:

    “…what’s weird in a penguin is perfectly normal in a jumping spider and neither has quite the same capabilities as a bat, but we don’t call any of them names because we understand that they’re not meant to process the world in the same way.” THIS. This sums it up soooo well! What a profound thought. YES. So well put!

    This was such a fascinating article, and I really appreciate you opening your heart to us and sharing your thoughts. We’ve always kind of wondered if my sister is on the spectrum somewhere, and reading posts like this really helps me understand an insider’s point-of-view. The world definitely sets standards of how we’re all supposed to act and supposed to live, and it’s all so ridiculous. We ALL have different lives, different personalities, different ways of life. And that’s OKAY. There should be no standard. We just…are. We’re people. Everyone. And shouldn’t that be enough?

    This whole post really summed it up so, so well. Thank you again for sharing! ❤

    Like

    • Yay, my post did what it was meant to do!

      No two stories will overlap perfectly because no two people do, but it’s cool if your sister can see parts of herself in things like this. . . it’s nice to know someone else does this or that thing too.

      Like

  2. Ok, I honestly had no clue you were on the spectrum until now. But thank you very much for sharing your story and experiences and those resources. Besides the fact that I always enjoy reading your life posts, whatever they happen to be about, I appreciate the fact that I now have a little more knowledge and a little more perspective on what autism actually looks like. And the bit about God not creating us all differently just so we can all act the same — that is so true, and I appreciate that muchly.

    Just wondering: are there any books or resources other than the ones linked in the post that you personally recommend for further learning about what life looks like for people with autism? I mean, I’m bookmarking the “About Autism” page, both for the content and so I can look more into any other resources the site has, and the Autism in Heels book is on my TBR list now. But I wanted to ask. (One of my main characters in my current WIP may have accidentally ended up being on the mild end of the spectrum, and I need to do some research and figure it out before my first rewrite so that if she *is* on the spectrum, I can write her in a way that’s sensitive and realistic and not perpetuating stereotypes. And another blogger has some books-with-autistic-people recommendations, but 75% of them are YA or NA contemporary fiction, which isn’t my favorite thing.)

    And, if you’ll permit a bit of a rant — people who judge other people for being deeply interested and knowledgeable about things they’re interested in, regardless of whether or not they’re neurotypical, deserve to be slapped. Hard. People getting excited about learning and knowing things should be storming *celebrated,* and listening to people talk about the things they’re excited about is a joy, even if I’m not necessarily interested in the topic. Yeah. I have opinions about that.

    (Final side note: as someone else who cannot keep her hands still even if she’s not anywhere near the spectrum, you have my sympathy on that point.)

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    • Right! It’s like people might be more excited to learn things if people didn’t think learning was so boring and then do their best to make it boring. When someone’s genuinely interested in their topic and sharing what they know, their excitement is infectious even if the listener hasn’t got a clue what they’re talking about. Maybe people discourage that because they haven’t got any passions of their own and they don’t want people to have fun without them, I don’t know.

      Other than the resources I linked to, I haven’t found very many books or sites that seem to have a well-balanced view of things. https://neuroclastic.com/, while I haven’t delved too deep into it, seems pretty good so far, and has a useful index of topics. This Ted Talk is good: https://www.youtube.com/watch?v=NCAErePScO0.

      Like

      • Either that or they’re jealous that other people know things they don’t. XD But yes, it bugs me how, culturally, learning and study is portrayed as being boring and a chore all that. I mean, it can be, sometimes, but the culture focuses on that and that discourages people from finding *any* learning in *any* form on *any* topic interesting.

        Thank you! I think those two, plus what I got from your post, will probably be a pretty good range for figuring out my first question, and from there I’ll know if I need to do more searching on my own.

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      • It’s good to keep in mind that no two people, autistic or otherwise, will be quite alike, so you don’t have to write a character who’s a perfect copy of this or that autistic person. That might take some of the pressure off. You can always bounce ideas off me if you want to. As long as the character’s not a robot you should be fine.

        Liked by 1 person

      • I know, but I do appreciate the encouragement. It’s more of, if I know how a few people experience certain things I can better figure out how this character experiences things. And thank you; I may take you up on that offer.

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  3. Scott Paulson says:

    Thanks for your post. It isn’t always easy to be candid and open about certain subjects, especially with one close to the heart. I don’t recall how long ago I first heard about autism, but, yes, preconceptions and assumptions exist. One of the people I remember hearing about was Dr. Temple Grandin, a woman and a gifted animal scientist. Just last year, I read Grandin’s book, “Thinking in pictures: My Life with Autism”. It was very informative and relatable. Although helpful, her story itself carries a sadness, too, not only because of her early home life, but also because of the understanding she has of our God and the Father of our Lord Jesus Christ.

    Still, because she writes both from an analytical and personal perspective, and because she wrote of her experience back in 1986, in “Emergence: Labeled Autistic”, Dr. Grandin’s works are influential. I’ve not read the 1986 book. The introduction to “Thinking…” by Oliver Sacks, gives some attention to the stereotypes to which you refer. Chapter titles include: “Thinking in Pictures: Autism and Visual Thought”; “The Great Continuum: Diagnosing Autism”; “Learning Empathy: Emotion and Autism”; and “Stairway to Heaven: Religion and Belief”. Her book also includes a section on references (a bibliography), readings, and resources.

    Anyway, that’s all I have time for this morning. Grace and peace, friend.

    Like

    • I have read most of Thinking in Pictures — we have it at work. I found it hard to get into at first, for some reason, possibly because I started with the visual thought chapter and that is the opposite of how my mind works. It was really interesting, though, to get a glimpse into someone else’s head like that.

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