Rules of Consent for an Autistic Kid (and anybody else)

[Originally known as Rules of Consent (Complicated Version for Big Boys)]

1.) If you are doing something to somebody else and they say ‘Stop!’ or ‘No’ or ‘Ow’ or ‘I don’t like that’, STOP IMMEDIATELY. Follow up by asking if they’re okay. Don’t start up again unless they invite you to. You can instead suggest something else to do: play a different game, watch something, hang out and talk.

2.) If you have tried to do something with or to multiple people in a short timespan (which might be a few minutes or an hour or a day, depending), and those people say NO, don’t experiment by trying it on new people. For example: if two people don’t like ‘joke hugs’, don’t try it on a new person for at least a day. If three people don’t like it, wait a week before trying a new person, and so on.
3.) Respect a closed door. Never open a closed door unless you’re the one who closed it, or the owner gives you permission. Only knock once on a closed door. Special requests override the knock-once rule. So do life-threatening emergencies.
4.) When you are a guest, wait for an invitation to do things unless it’s a biological issue: you can ask for a drink of water and to use the bathroom, but do not play with toys or explore the house unless they invite you to do so. You can ask questions about things in the house, but not if you can play with those things. (If they want you to play with those things, they will invite you to do so.)
5.) Hands off. Don’t grab people. Don’t restrain them. Don’t hold them down. Explicit exceptions: you’ve both agreed to play some kind of wrestling game. Somebody is in danger of being hurt (running into traffic, falling off a tree, and so on).
6.) Respect personal space. Don’t stand closer than an arm’s length to a stranger, a hand’s length from a friend and you can hug family, but you have to ask first.
7.) Respect personal boundaries. Everybody has different personal boundaries regarding personal space AND personal interests. Rule #1 also applies to topics of conversation. If somebody says, “I don’t want to talk about that,” say, “OK!” and  change the subject. You can always talk about the weather or your pets.
8.) If you have observed that somebody does not like it when a third party does something (they say, “No,” or “Stop,” or “I don’t like that,” or “I don’t want to talk about it,” or “Don’t touch that,”) do not test if that rule also applies to you. Assume it does.
9.) All these rules also apply to other people interacting with YOU.

Accidental Representation

Jim Hines is hosting his excellent annual series on why diversity in SFF is important. I’d like to talk about something connected but not quite the same: accidental representation.

But first– apparently there’s an article out about how Aspergers and high-functioning autism are dramatically underdiagnosed in girls. This made me think about my own childhood. I never would have been diagnosed because I wasn’t interested in planes or planets or watches, I was intensely interested in people.

I read a book once in which somebody had literally been Focused on People. She read as autistic until the end, when it’s revealed she’d been damaged instead.

And more often than not, that’s what happens when I find somebody in fiction who thinks so much like me that I instantly identify with them. It turns out the author wasn’t trying to write somebody with autism. They were writing a demon. Or a maladjusted anthropomorphic personification. Or somebody with brain damage.

With all of them there’s a moment of, “Oh my god! It’s somebody like me!” and sure maybe that person is difficult, maybe even a bad guy but that moment of realizing people like me exist in fiction is wonderful– until I discover the connection was accidental. The author is shocked and horrified when somebody points out the parallels with autism. They didn’t mean that, no, not at all!

(And these are all authors I love, too, which is why I was so delighted with the characters. Who doesn’t want to believe that their favorite artist really understands them?

But no. It was an accident.)

So not only do I feel like an alien, but the characters I identify with are quickly pulled away as ‘unintended’. That really, really sucks. It’s also one reason I write about neurodiverse characters. I mean, I didn’t set out to Make A Statement, but I will if I have to. I hate feeling like a freak: like my body is exotic and my brain came from outer space– and having representations yanked away only emphasizes that feeling.

What’s even worse is that reaction of surprise and even horror: because they wrote what they saw as problems to be solved, not natural ways of thinking. The idea that somebody might strongly identify with somebody they think of as basically broken is very upsetting.

But I didn’t read those characters as broken. I just read them as people like me.  People who think differently but who are just as interesting and just as capable of being awesome.  People who can inspire me to feel like less of an alien and more like me. 

Admittedly, that’s a lot easier in a world where people recognize you when they write about you.

*

It would be foolish of me, I suppose, not to point my own work toward providing fictional companions to the neurodiverse:

in Nightlights, Jehane is a protagonist, she falls in love, she acts heroically.  She’s also autistic. She’s not the only neurodiverse character but she’s the most obvious one.

in Matchbox Girls, Marley, the heroine, has an anxiety disorder. She eventually she discovers she has magic, too. It doesn’t help nearly as much as she’d like.

And in Citadel of the Sky, you can find a lot of different acronyms and disorders, along with more complicated, less easily labelled things. There’s also an entire group of people dedicated to providing accommodations for the neurodiverse Royal Family… and a story about what happens when those accommodations are taken away.

About Autism and Intelligence

I have a little boy. He’s six years old and he’s autistic. But he’s maybe not what you think of when I say ‘autistic’. Or ‘six years old’, maybe not that either.

Autism is a funny thing, it’s something that isn’t very well understood and there are a lot of problems that are often comorbid with it to the extent that they’re considered part and parcel of autism by most people with limited experience with the disorder. For example, take sensory processing disorder. From what I understand, this makes sensory input problematic for kids. It can make a shirt actively painful. It can make it hard to look at faces, or sit in a loud classroom, or deal with bright lights.

I don’t have much experience with SPD, because Robin doesn’t have it. Robin doesn’t have fine motor problems, he can move around just fine (although he’s not very athletic), he rarely has massive meltdowns and he’s more insensitive than sensitive to sensory input. And he doesn’t have any intellectual delays, either. More about that later.

What Robin does have is a fundamental disinterest in other people as a concept.

Most people notice when other people around them do something as a group. If the crowd is moving one direction, they notice, they wonder what’s going on, maybe they go find out.  My 18 month old baby does this, but Robin never has. If somebody tells a person what they’re doing is having an impact on other people, they understand what that means. They may not care, but they understand.

Most people, when they’re babies, like to look at human faces. Robin liked to look at lights. Living things have never interested him very much. He loves his family, he loves to be around us, he loves our attention, but he’s only started noticing strangers exist in the last year or so. They’re interesting oddities to interrogate. And we’re people to help him manage his life.

So the challenges with Robin center around teaching him how to manage his own life, about teaching him to communicate (because he does have some verbal problems) and around teaching him about other people. About how to deal with them, talk to them, get along with them. But first– and this is where there’s the difference that contributed to a diagnosis– we have to teach him to care. We can’t explain that it hurts people to hit them so he shouldn’t do it. We can’t explain that other people don’t like it, so he shouldn’t do it.  Any explanation that ends at ‘other people’ doesn’t actually end there.

It’s quite a lot of work, really. But he’s delayed, not disabled. He’s learning, he’s developing some of this stuff that his brother has at 18 months. His brother actually helps in a way; sibling rivalry is a wonderful thing. I’m pretty sure he’s going to grow up to be as kind and aware as I can teach him to be.

Now, look and see. Look how easily I talk about Robin’s autism. He has problems, we work on them, I think they’re beatable with enough time and patience and attention.

But look back up at where I say that Robin doesn’t have an intellectual delay. I’ll show off art and programs he does but it’s not something I’m ever comfortable talking about directly. Kevin is much better than I am at talking about it. You see, Robin is very, very bright. I often downplay it in face to face conversations, because what’s the point of talking about it? They never hear what I’m trying to say. He is both extremely bright, and autistic. Not an Aspy, that diagnosis is for highly verbal kids with no language delay. He talks, but not easily. He’s never been verbose.

It’s hard to talk about Robin’s intelligence because… let me see how to put this…. Intelligence is a virtue in our society. To many people, intelligence is the virtue. And there’s a bit of oneupsmanship that goes on there, especially among parents. Everybody says their kids are smart, and nobody believes anybody else’s kid is as smart as their parents think they are. I don’t want to engage in that. There’s no point.  I’m not comfortable enough with the subject. Or rather, I’m too aware, from too many angles, of the drawbacks of being so sharp you cut yourself.

Intelligence: it’s a two edged weapon. And it’s particularly vicious when wielded by somebody who is totally free of the spiderweb strands of social awareness that entangle most humans. He sees the loopholes in any instruction he dislikes, immediately, naturally. He works out the most direct path between “I want” and “I have” without any regard for other people. Sure, he can read big words and do multiplication and draw detailed world maps and shade spheres and name the capitals of all the states and draw fonts and… and… and… so what? The real issue here is that he’s going to be bored in school and because he’s autistic, he’s way behind on the ‘sit still and quiet because it’s what’s done socially’ front. Because he’s autistic, when a teacher talks to the class, he doesn’t realize she’s also talking to him.

I’m rambling. I’m thinking about his first grade and about how hard it is to convince people a kid is smart enough to be a problem, because as soon as a parent suggests their kid is smart, everybody else hears ‘brag brag brag’. About how good-intentioned people hear ‘autistic’ and think a quiet room and meltdown avoidance is the order of the day. How if he’s smart enough to read like a fourth grader, he’s smart enough to follow general instructions. Right? Right? Wrong… Because these things aren’t actually linked for him. He needs somebody to explain it, over and over again.

We’ve talked repeatedly with him about how he isn’t going to school to learn academics. He’s there to learn about people. And he understands… intellectually. He’s still learning about why it’s actually valuable, because he doesn’t feel it. And it’s slow going in for him, just like some kids can’t make letters into words, or numbers add up. (The joy many people feel in a social exchange, he feels with PATTERNS. Patterns! Wonderful patterns! And lights! And REALLY BIG THINGS! And patterns that mean things!) And of course the school has to be on board with the idea that a student may not need reading riting rithmatic but may very much need lots of guided practice and philosophical explanations about the value of kindness and social awareness. It’ll be exciting seeing how this year goes…

I’m intensely proud of my son. He’s learning the value of hard work despite his gifts. He tries very, very hard when he wants to. Sometimes he does astonishing things, and sometimes he takes the lazy way out and wants to be praised for it. He’s a kid. He’s not any more mischievous than any other six year old. He’s stubborn and inquisitive and sees no point in doing things he doesn’t understand. He’s not bad. He’s bright, and he’s autistic. Maybe they’re two halves of the same coin, for him, or maybe the intelligence gives him a flexibility that makes his autism less of a burden for him than it is for some other children. We’ll never know. It doesn’t really matter. In the end, he’s just Robin.