A message to parents of autistic kids:

This post is not inspired by anything in particular. Rather it’s more of a final-straw rant that I need to get out so that I can get back to work on a huge assignment.
A very common silencing technique employed against autistic adults/advocates when we criticize the way autistic kids are treated is to comment that we’re not experts in the field.

And, yes. Many of us are not experts in autism academia. But you know what we are experts in? Being autistic. Living while autistic. Looking at stuff from the autistic point of view.

Think about that before you try to shut us up by telling us we aren’t “experts” in “anything” because you feel our perspective is an attack on your parenting skills or what have you. I have 26 years of experience in being autistic. You, Mx Allistic Parent of an Autistic Kid, have none. I have valid experience and perspective to offer on this.

And, for the record: when I talk about how being pressured to fit in hurt me, or how my parents often missed critical context to situations, or whatever else have you, I don’t do that to attack you. I do that to lend the perspective of my life experience to your situation, to encourage you to think about things from your kid’s point of view, and mostly, to help prevent other people’s parents from making the same mistakes mine did. That’s not an attack. I’m trying to help your kid. When other autistic people do that (and there are a lot of them, the previous four links being only a small sampling of autistic perspectives out there), they’re not doing it to attack you, they’re doing it to help your kid.

If you take my perspective as an attack, the fault lies not with me for not sitting down and shutting up like a good (compliant, docile, normal) girl while the real (allistic) people talk. It lies with you for viewing the perspective of one with less power than you as an attack. If you’re a person of color, consider how you’d feel if a white person asked you snidely whether you’re an anthropologist when you complain about offensive/harmful shit white people do. If you’re a woman, consider how you’d feel if a man asks snidely about whether you have evidence that sexism exists. If you, yourself have a disability or chronic illness, consider how you feel when a CAB person asks snidely if you’re an engineer or public health expert when you comment about an access fail. And so on. Use that perspective to reconsider your reaction to the words of autistic adults and advocates when we offer our perspectives. Yeah, I might not know all the academic jargon, but I sure as shit know my life.

“For my own good” isn’t.

Trigger warning: some discussion of abuse and gender norm enforcement.

I have a thing against people doing stuff for my own good or in my best interest without consulting me first. If you don’t like me getting angry with you, don’t do that. I might not show my anger now, or the next time or even the time after that because my parents socialized me hard to never stand up for myself, but eventually, I’ll hit the point of can’t-take-it-anymore and explode at you.

And you will deserve it.

Especially if you know that my parents socialized me into never standing up for myself and so I have a hard time saying, “No, I actually don’t want that.”

Why?

Well, most importantly, because nobody knows my wants and needs better than me. So not consulting me on something that concerns me = not cool. When you do that, you’re saying you know my wants and needs at least as well as I do. And you don’t. Secondly, because it’s infantilizing to me to try to treat me like a child who can’t advocate for herself. I know my own best interests. Ask me.

Finally, because people in my past have historically been very dishonest when they claim to be doing stuff in my best interest or for my own good. When people have told me that they’re doing something in my best interest, what they usually really mean is one of three things: “I’m trying to justify abusive behavior,” “It’s in my best convenience,” or “it’s what I want for you, and I don’t give a shit what you want.”
My parents would – and still do – justify abusive behavior by arguing that physical and emotional abuse was for my own good because I needed “discipline.” How threatening to strip a 14-year-old naked in public and spank her is discipline and not emotional and probably sexual abuse, I don’t know. To me, that’s not discipline, that’s abuse. To me, they weren’t doing it for my own good, they were doing it to vent their spleens.

My parents and teachers would frequently argue that refusing me accommodations was in my best interest because it would teach me patience, diligence, organization, and discipline. It didn’t actually teach me any of those. What it taught me was that I’m a bad person (because my boredom intolerance made me act out which got me painted as a problem kid), that people with power will make you do pointless makework just for their own amusement and you can’t fight back, that might makes right (because my parents would physically restrain and force me to complete work I’d refused because it was pointless) and that I should just shut up and take abuse because if I try to stand up for myself, things get worse for me. It didn’t do me any good at all, but it did save them the work of setting up proper accommodations. Fancy that.

My parents would frequently ignore my actual interests to make me do activities with my sister instead. They argued that it was in my best interest to do more social activities. What they actually wanted was for my sister’s social competence and social butterfly characteristics to rub off on me. They didn’t. And, again, not in my best interest to spend time at stuff I didn’t want to do and be refused the chance to do stuff I did want to do. And I wonder, if I’d met kids with whom I had some common ground, if I might have had more friends during grade school than I did when my parents were trying their damnedest to sand off my corners and force me into that round hole they wanted me to go through. I’ll never know, though, because my parents were so damned set on turning me into a “real girl” (their words) that they couldn’t let me be who I actually am and make friends with kids like me.

So, whenever the phrases “for X’s own good” or “in X’s best interest” come up, I get suspicious and wary. Because I know that those phrases pretty much never mean what people say they mean. So unless I’ve told you what would help me or what’s in my best interest, don’t do stuff “for my own good” or “in my best interest.” Chances are, you’re just being self-serving and trying to justify it to yourself. Ask me what’s best for me instead.

On boundaries

Trigger warning: some discussion of emotional abuse and threats of violence

This is going to be a bit of a rambling post that doesn’t really come to a solid conclusion because I haven’t quite figured it all out yet.

See, boundaries are hard for me to write about because I don’t really understand them. I get that they exist and what they’re there for, don’t get me wrong, and I have no problem respecting the boundaries of others. What I have difficulty with is establishing and enforcing my own boundaries.

Why? Well, I guess to best explain that, I’d better paint you a picture of how I grew up.

My parents would only let me shut my bedroom door while I was getting changed. The rest of the time, it had to be open. If they thought it had been closed for too long, they would barge in.

Nobody in the family would respect that my space was mine and nobody else’s. They would just walk in. And I would be the bad one for getting angry at them when everyone else in the house – literally everyone, even toddlers when they were living there – had their own space that they could go to in order to be alone and that everyone, even the parents, would respect by knocking before entering. But I was the eldest and therefore supposed to not have privacy for some reason? I don’t get it.

My mother threatened to call the cops on me once because I got so sick of having people barge in that I arranged furniture across the room to jam the door shut and just stayed there for a day and a half. For no reason other than to send the message that my room is mine and if I really want you out, you’re staying out.

Even though I had a desk in my room where I could work, my parents would make me do homework on the dinner table because they couldn’t stand over my shoulder and nitpick every little thing and make me feel ridiculously self-conscious if I was doing it in my room.

(They wondered why I started lying about whether I had homework and chalked it up to being lazy. No, I wasn’t lazy, I just can’t work when I know someone is watching for my slightest mistake so they can gleefully pounce on it, destroy an hour’s work and command that I start again. Which they did. Because from me, they demanded perfection. They didn’t demand it from my siblings, but I was the eldest and therefore I had to “set a good example” which apparently means doing everything perfectly on the first try.)

Any argument I had with my siblings, I would be punished for. As the eldest, I was supposed to be the “mature” one, with the skill to “defuse” a situation before it got to shouting, and so even if my sibling charged into my room and started hauling me around by my hair – which happened once – I would be the one punished for it. Because I should’ve defused her attempts to grab me by my hair and haul me around somehow. Which amounted to punishing me for having social trouble.

My parents would relay personal information about me to strangers and friends of the family, and not in an appropriate parental way. In a “We’re humiliating our kid for shits and giggles” way, and then they’d punish me if I protested. For example, we’re visiting friends of the family and a toddler gets sick from too much rich food. My parents, rather than help clean up the toddler or what have you, proceed to go into a long story about how when I was 8, I got food poisoning while on a cross-country trip and [insert graphic details played for laughs here].

If I protested them relaying this story and playing it up for laughs, I was informed that everyone gets sick now and then and that I should have more of a sense of humor. When I continued to protest, they grounded me. When I protested their grounding since I thought I should have a right to protest when someone was humiliating me, they threatened to strip me nude and spank me in public and asked how embarrassed I would be then. So I shut up. What I didn’t realize at the time but I do now is that, yes, everyone does get sick now and then, but not everyone has their relatives relay in great graphic detail about times they got sick to complete strangers. Not okay. And I was right to protest. Privacy and dignity are things that should be respected, even by parents of their kids.

Basically, my parents socialized abused me into never standing up for myself and not having any boundaries. Which they then used, when I went off to university, as an excuse to demand that I ask them for permission for everything when I was a legal adult living in my own space over 1000km away. Oh, and they wanted me to follow a curfew, and fax them all my assignments before I handed them in.

Sometime in my first month, one of the people I met said, “You don’t have to ask their permission for everything. You’re an adult and they’re a province away. What are they going to do, ground you?”

Lightbulb.

So I first started just telling them I was going to do stuff, and got into fights with them where they would browbeat me into submission, until I figured out, wait a minute, I don’t have to tell them!

So I stopped telling them.

This has become my strategy for dealing with people like my parents.

My father is easier to deal with than my mother. He is verbally abusive and physically aggressive, yes, but in a straightforward kind of way. I know what to expect from him.

My mother, not so much. She is devious, passive aggressive, and very manipulative. You will be arguing with her about something you want to do, and think you’ve won the argument, and then when the day shows up, she provokes you into a fight or provokes your sibling to pick a fight with you or something, and the next thing you know, you’re delayed so long that you can’t do it, and it all works out exactly as she wanted in the first place.

She’s hard to deal with because I never know what to expect.

However, I recently discovered that I can beat her at her game simply by refusing to play by her rules. Because her rules are, “Mom wins always.” Stacked against me, not fair. Not going to play by those rules.

So, what does this look like in practice? Well, case in point: Trips home. I visit home a couple times a year. It used to be that getting on the bus back was a huge struggle if I wanted to be here on time, and I’d have to plan a few extra days in case my mother decided she wanted me to stay a bit longer. Because I’d take the bus, and it would stop an hour’s drive from my parents’ place. They’d get to the bus stop to pick me up, then drive me home. Later, they’d drive me to the bus stop.

My mother chronically runs an hour late when she doesn’t care about something. When she doesn’t want something to happen, she chronically runs just late enough that she can put on a show of trying to get there on time but still miss it. It used to be a huge fight to get there in time for the bus, and if she wanted me to miss the bus, I’d miss the bus. The pattern here was that the situation always conveniently turned out exactly the way she wanted it.

Last year, I turned 25 and was finally old enough to rent a car without paying a huge surcharge for the crime of being young. So, I decided, “Know what? I’m not going to play by your rules. I’m going to rent a car instead, and then I don’t have to depend on you to get me there in time.” So I did, and it worked.

Last time I visited, she tried parking me in and then “forgetting” where she put her car keys until after dark in order to convince me to stay an extra day. I said, no, I have to be at work tomorrow, so I guess I’m driving after dark. Goodbye.

But the beauty of it was that I didn’t have to get angry or frustrated or shout about it. There was no fight. There was just. “I have to do X because Y. So, I’m going to do X now. Goodbye.”

She tried to turn it into a fight by picking at me about my driving, my age, the fact that my rental would be late anyway (no, because I planned for her making me late to leave and rented it for an extra day, not that I told her that), but in the end it was me saying, “I’m not going to play by your rules on this.” Fighting with her would’ve been playing by her rules, because it would’ve opened things up to her guilt-tripping, emotional blackmail and other verbal abuse techniques.

Maybe that realization – I don’t have to play by her rules – is all there is to setting boundaries. Refusing to play by rules that are stacked against me, and refusing to enter situations that are set up for my failure might be all there is to it. Or a lot of it. I don’t know, I’ll have to think about this more.