Memory of a First Encounter

The first time I saw someone like me, I knew. I knew in the deepest pit of my stomach that that man, sitting four benches away at the bus station,  rocking quickly, deeply, back and forth, back and forth, his rocking growing in intensity as each bus pulled up, braked loudly, disgorged its passengers, a teaming, stinking, babbling mess of people, that this man was me, and I was him.

I knew as I began to rock gently in response to too much, too much, too much. I knew as I realized that our rocking was in time. I knew as he looked my direction, briefly, before looking up and away and rolling his head on his shoulders. I knew as my friend, sitting by me, grabbed my backpack and made me sit still. I knew as she looked past me, looked at this man, laughed. "God," she said, loud enough that I know he hears. "Look at the retard. Doesn't he know he shouldn't do that in public?"

I knew as I struggled to sit still. I knew as I kept looking his direction as his rocking increased to a frenetic pace as each bus arrived and departed in a havoc of noise and reek.

I knew as sirens wailed in the distance. I knew as I broke free of the constraining hand, and set to a rocking pace to match this man, covering my ears as he did, rolling my head to get the noise to leave as ambulance and firetruck screamed past.

I knew as he turned, looked at me, locked faces. I knew as I felt our simultaneous rocking slow, and his face, twisted with pain and overstim, relax. I knew as I felt my own face follow his, easing creases I hadn't known until that moment were etched there. I knew as his jaw opened wide, worked silently, closed again. I knew as our rocking became easier, slower, more musical and less frantic. I knew, but had no words for my knowing. You are me. I am you. We are us. He smiled at me, eyes locking then flitting away. I smiled back, fleeting, and my hand fluttered at my side, and I knew that he knew, as his hands flew up to flutter around his face, his rocking, still deep, now more rhythmic and gentle.

"Stop it! You'll make people stare! You're acting like the retard!" The hand on my pack was back, and now that the sirens had passed, my need to rock had slowed and I could feel the restraint again.

"Don't call him that." I muttered it, looking away from her, and I doubt she hears. "Don't call me that." I doubt she has heard yet. I wanted to get up, to walk away, to go sit next to the rocking man and begin rocking in time with him, but I did not. She had her hand on my pack again, doing her best to restrain me, to guide me into her normality, and I knew.

I knew that I wanted none of it.

THIS is Autism.

Several days ago, I found this, and became enraged: http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

So I wrote something, and posted it elsewhere. Now it’s coming here, with major additions. 

I am one of your three million “missing” children.

Please read this article, then for the love of any god you choose read the comments, and listen to the only Autistics speaking…

Autism Speaks is an alarmist, ableist, fearmongering organization that seeks to silence my voice and the voices of my three million “missing” brothers and sisters, because we do not conform with the narrative that they are presenting. They support a medical ‘cure’ model for Autism, which boils down to eugenics policies against Autistic people. Autism Speaks is an Autism Advocacy firm without any Autistics in their ranks, which I hope says more than it doesn’t. They would be happier if I had never existed, and would be perfectly happy if no one like me was ever born again. 

The picture painted within this article? The repetition of “this is Autism”? This is NOT Autism. Autism can be this, yes. But it is not only this.

Autism is your nonverbal son giving the very. Best. Hugs. to everyone he loves, and learning, late, at seven or nine or ten or fifteen or twenty, to write with such passion that you are moved to tears. Autism is your gifted, brilliant, talented daughter coming home crying because she has a hard time with social interaction, and can’t get along easily with the other kids. Autism is trying to speak, and the grate at the top of your throat closing fast and keeping your words prisoner. Autism is being asked a question and only being able to respond “Auh…?” Autism is being asked the same question on paper and writing an A+, three page essay in an hour. Autism is being told that your stories are amazingly imaginative. Autism is being told you must have no imagination. Autism is not knowing what to do when your classmate, coworker, shift supervisor calls you “retard”. Autism is this insult coming more frequently than anything else. Autism is being afraid to go to HR because “Well, he’s right…” Autism is being told that you’re broken and wrong so many times you start to believe it. Autism is the deep shame that comes with wetting your bed or your pants in a coughing fit at seven, or ten, or twenty. Again. Autism is knowing exactly what your body wants and needs at every moment, and being unable to turn off the newsfeed. Autism is knowing that if you laugh and sneeze at the same time, everyone will know. 

Autism is “Books are my friends…” Autism is “Cats are my friends…” Autism is “Trees are my friends…” Autism is being afraid to ask people to be your friend, because people are cruel, and will only call you a retard. Again. Autism is learning your ABCs at three, and then being unable to progress until ten or twelve, because there is just to much else going on, and your chair hurts too much. Autism is the need to get up from your chair and spin on your toes to think of the answer to a question. Autism is the inability to stop yourself from spinning in the grocery store. Autism is being able to remember every bullet on a thirty-line shopping list — but only while I’m spinning, so please write this down. Autism is the world spinning around you. Autism is biting down on the only solid thing in the world to stop the spinning and the light and the sounds. Autism is scarring your knuckles with your teeth to keep your still point for just that moment longer, long enough to calm the rising meltdown long enough to get home.

Autism is having a bachelor’s degree and working as a janitor. Autism is locking yourself in the bathroom and sobbing several times a day at work because your supervisor is impossible. Autism is being blamed and publicly shamed when you nearly make a mistake because your supervisor failed to relay a change of instructions to you until you were about to open the now-alarmed door (that you had used earlier that day). Autism is getting home, collapsing, and screaming until you’re hoarse because you need to scream, or die. Autism is being “prone to self harm”. Autism is being clumsy. Autism is being screamed at for being a child, for being clumsy, for taking a turn around a corner too wide and knocking something off a shelf. Autism is crying for hours because you did a ‘bad thing’ and broke something. Autism is “How can you be so fucking clumsy?!” Autism is being terrified of clacking dishes together in the sink, because I am clumsy and if I break this I am worthless. Autism is struggling to control how your hands move.

Autism is seeing walls along the sides of sidewalks as elevated sidewalks made just for you. Autism is having perfect balance one moment, and tripping over air the next. Autism is living standing balanced on the balls of your feet, bouncing around your environment and jumping on and over things because it’s almost flying. Autism is being the worst in your PE class, and struggling to do your best anyway. Autism is being so, so grateful that the man who teaches it understands that you are struggling, and doing your best. Autism is wondering why certain fabric just hurts, or too much grease makes food inedible, or certain frequencies and intensities of light and sound just drive you into a panic.

Autism is “I’m having bad overstim right now, could you maybe not rustle your potato chips quite so loudly at me?” Autism is “Can you eat your rice crispies not in the kitchen? I’m trying to clean and the sound of your food hurts me…” Autism is living with someone for six months before being able to articulate these desires, because you are afraid of what they will say in return. Autism is being called blunt and rude for trying to be clear and firm in your needs. Autism is being unable to stand the sounds of your family — or yourself — chewing and clinking their utensils. Autism is being unable to just “get over it” or “grin and bear it” when things hurt like this. Autism is wanting to turn and punch the person who somehow doesn’t know how to mix things in a glass without ringing the spoon against the side of it for minutes on end. Autism is knowing that if you do, it will be your fault, and you will be punished. Autism is trying to “use your words” and failing because the grate is down again. Autism is being told you are selfish and whiney and bratty when finally, finally voicing your needs. Autism is being treated like a subhuman for needing to be away from the sound of smacking lips and clacking silverware, by a population that accuses US of being without empathy.

Autism is being struck dumb and unresponsive by a gift. Autism is staring blankly at the thing in your hands wondering why you were given it, even when you asked for it. Autism is knowing that the appropriate response for a gift is not the hollow and empty “thank you” we have been taught to imitate, but a hug and a nice meal, or a gift in return, or simply a rare, rare smile. Autism is being berated for unwillingness to conform to social niceties I find meaningless. Autism is never knowing what to say when people pay you a compliment. Autism is being told, over and over again, that you deserve no compliments. Autism is smiling blankly at the world because you were instructed to. Autism is smiling at stress because it’s what comes naturally. Autism is being screamed at for hours because “this is not an appropriate moment to be smiling!” Autism is being berated for not following a script you were never given. 

Autism is being told you’re not trying hard enough when you are hanging onto the last frayed shreds of your rope just to try not to scream in public. Autism is expressing yourself through pterodactyl noises. Autism is being told you deserve no accommodations for the way the world hurts. Autism is ‘making a scene’ in the grocery store because the music is painful and it’s too bright and OH GOD THE WHOLE STORE SMELLS OF TIDE and you are seven and simply can’t. Autism is being told to knock it off time and again when ‘doing something completely distracting’ like spinning or walking circles around your mother and her cart simply to make the bad stim go away. Autism is trying so hard to knock it off that it all comes crashing back and all you can do now is scream. Autism is being able to smell the history of the public bus you have to take every day, and the people who rode it yesterday. Autism is knowing what kind of perfume your busdriver’s wife wears. Autism is being unable to turn off that ability. Autism is always making a beeline for the back of the bus, the seat over the right rear tires. Autism is being literally felled by the smell of Axe as a man sits down six rows ahead of you. Autism is needing to get off the bus and puke up what you were forced to eat for breakfast even though you didn’t wan it, because food was bad enough but now there’s AXE too and I just can’t. Autism is being able to pick out all the ingredients in a mulling spice by scent. Autism is never needing to label your spices or cooking ingredients, because you know what they are, and if you forget, you can just smell them and know. Autism is having a hard time taking a shower because it overloads your senses. Autism is not seeing the point in taking a shower because as soon as you turn off the water, you can smell yourself again. Autism is needing a brimmed hat all the time because sunlight and fluorescents are just too much. Autism is carrying a pair of earplugs because the street hurts to listen to. Autism is hearing the music of the human soul everywhere. Autism is having to listen carefully in order to hear the words you are speaking above the sound your soul is making.

Autism is the ability to quote paragraph and page out of your favourite book, within the context of the conversation at hand, without missing a beat. Autism is struggling to form words and sentences of your own, and using your library of quotes as the crutches that help you walk through the tasks of society. Autism is slowly learning to quote yourself. Autism is being too afraid to leave the house today, because my mental library is closed for maintenance, and I am mute without it. Autism is being forced to engage in interaction you find confrontational, terrifying and dangerous every single day with every single person you encounter in the world, simply to avoid being branded a liar. Autism is developing coping mechanisms on your own because “there’s nothing wrong with you!” Autism is staring at the space between your eyebrows, after a lifetime of being screamed at about eye-contact. Autism is being passed up for another job, because questions are hard and people are scary, so you choked in your interview. Again. 

Autism is the willingness to accept others for their uniqueness, their oddness, their otherness, not in spite of it. Autism is a way of thinking differently about the world around you. Autism is growing up knowing no one around you sees the world like you do. Autism is knowing that there are bits about you that just don’t fit with what society wants, and not knowing what to do about it. Autism is knowing the pieces of your mind will never click into a ‘normal’ child. Autism is realizing that there are other Autistics in the world who *do* see the world the way you do. Autism is being completely, utterly alone. Autism is being millions. Autism is realizing that this is not something wrong, merely something different. Autism is all of the oddly shaped pieces finally, finally fitting together, all the little bits clicking into place. Autism is having a word for what makes you you. And me. 

Autism is a spectrum disorder, meaning that no two Auties will have the same level of functioning at any point, ever. Today I am typing articulately, but I’m not sure physical verbal communication is going to be easy. I have yet to actually speak today. Three days ago I was nonverbal and making to-do lists to combat executive disfunction (Finish drawing, cook dinner, brush teeth..). Tomorrow, I may be able to pass easily as Neurotypical, converse fluently with people on the street, and then come home to collapse into a pile with a stuffed octopus and some calming scents. In highschool I was just considered “weird” and “emotional”. I had breakdowns and meltdowns and every once in a while just screamed for half an hour curled in a ball because everything was just too much, and I had no words to articulate how this was so. Autism is meeting people like you for the first time, and being told that they were different from the rest of humanity. Autism is suddenly having a word for the difference you’ve lived with your whole life. Autism is the horror on your mother’s face when you joyously go to her saying “Mom! Mom! I think I’m Autistic, can we get me checked out?” knowing that suddenly things were fitting and meshing and the world was not looking quite so scary. Autism is “No, you’re perfectly normal! I was odd in highschool, too…” Autism is bowing to authority, and shutting up, because that is all you have been trained to do. Autism is being told that you’re ‘just odd’ or ‘perfectly normal’ enough times that you forget that there is a word for your oddness. Autism is remembering that wait. That. That’s a thing. That I have. Right. That’s a part of that thing I have.

Autism is so much more than all of this. 

Yes, rates of Autism diagnosis are rising, but not because Autism is becoming more common. We were here all along, you just couldn’t recognize us. The reason that there are so many more Auties walking around breathing your air today than there were in the fifties and sixties, etc, is because we have gotten better at recognizing Autism and applying the diagnosis.

Autism is articulate, and can speak for itself. Will you listen? 

A post about my PTSD.

Trigger warnings: Rape, abuse, transphobia, self-harm, depression, suicide, fuck you all. Mom, don't read this one.


***



The first time I told someone that I had been raped, she told me I was lying.  The second time, I was afraid I was. It took years to work up the nerve to tell a second person, and by that time I had blocked and rewired my memories enough that I wasn't, really, sure when I told her. I told her only after she admitted that she had been molested as a child.

I told her because she was afraid I wouldn't believe her. I believed her because she was so afraid that I wouldn't. I told her, and believed her, because it was so obvious that so many hadn't.

I had blocked and reordered much of my childhood by that point that much of what comes back still feels off. I have shadow-memories of what happened, day after day, in the barn I had to pass by every day simply to get off my parents' property. There are memories that I struggle with, unwilling and needing to touch, knowing they are there and receiving flashes of them every once in a while: A hug from my roommate yesterday pulled body-memories of the neighbor boy's mouth on my neck which took my knees out from under me and reduced me to a ball on the floor, pleading "no, no, no..."

For a while, I convinced myself that I was crazy, evil, making it all up. I remember hating my lying self in highschool, because that doesn't happen to good kids by people they know -- their peer group, even. Their mother taught us to "hide from cars at night!" She should have taught me to hide from her children. She should have taught her children not to be monsters.

From games of doctor that involved actual stitches to torturing animals to sexual things that an eight-year-old should not even know about, all wrapped up neatly under "You can't fight back or yell or tell anyone what we're doing in here, or I'll tell the police that your daddy is growing pot, and then your mommy and daddy will go to jail and you'll go to foster care." The disadvantages of living far out in the country are not lost on me, and being the youngest of the neighborhood kids was not in my favour.

The instant I started insisting that I should get to play the brother or the dad in games of house because I was a boy, too, I was doomed. The neighbor kids, a brother and sister who lived at the end of our long driveway, began very studiously attempting to "set me right" and show me how I was definitely a girl.

And that ended badly enough that I can't remember much of the next three years. Even writing this much forces me to stop and do housework and pay my rent in a flurry of motion, flushing the rising panic from my system. Even so, in the course of cleaning, I find my Big Knife and put it on my wallet, just in case, and the discovery of a Big Hammer causes me to heft it and pace about the house a bit, making defensive motions. And after doing these things, I am able to sit calmly and write again without my hands shaking, but the damage is clear.

And, in a way, their tactics worked. I stayed (mostly*) silent about my gender until someone asked me point blank in freshman year of college after I did several projects in a row for school related to trans-activism... Even then, my answer was "Er... No? Not exactly? I mean... It's complicated...." Considering the person asking the question was my beloved flamboyant translady roommate, who was at the time about a mile back in the closet, this conversation is hilarious in retrospect. I would love to have seen my face at the time.

(* I may have been preparing to come out after cutting my hair in highschool, and then when I dressed up as a boy to meet my mother at the airport, the first thing out of her mouth was a wailing, worried, "Oh, you look like a man!" Just remembering that hurts enough to almost put me in tears. Also, as my mother is so fond of pointing out every time the gender conversation comes up, I was always a very gender-balanced child. Gee. I was good at boy's roles in theatre, liked to sew, wore a kilt, insisted girls could wear kilts, too, my final project for my stage-makeup class was to turn myself into a highwayman, complete with musketeer goatee, and I hadn't worn girl's pants since ninth grade, but sometimes those boy's cargos were worn with a corset... Yes mom, I said I was a boy. I never said I wasn't a fabulous, cross-dressing one. )

This abuse and closeting lead to massive depression (and the accompanying weight gain), and in its turn lead to various bouts of cutting, years of anorexia with which I still struggle on occasion, and at least one serious consideration of suicide which was only stopped by sheer apathy and a furious bout of escapist reading (thank you JK Rowling. I think you saved my life.). And by the time I finally told that second person, I had almost convinced myself that that first person I had told was right, that I had been making it up. That it was all just some wild fantasy I cooked up in my head.

But I have scars I can't otherwise explain. I have memories that bubble up, unchanged, every time someone touches my ribcage, my knees, certain places on my neck and arms. I ran over a scar I didn't know I had while working on one of my tattoos, and had to stop work and deal with a memory of a rotary tool bit grinding on the arch of my foot. Haven't been able to go back and finish the tattoo yet, but I'll get there.  I probably explained the injury away at the time as having walked barefooted on the wrong surface. I was an injury-prone child...

I pressed everything back into the back of that dark closet of the mind, and there they mingled together and infected one another. Now, as I try to pull bits of myself that I have long since lost back to the forefront, one thing tangles in another as by necessity they must, and like a Miyazaki film there is suddenly black goo and infection spewing everywhere, but if we pull hard enough and let enough goo come out, then maybe we can pull out that infection and let the wounds begin to heal. And then we have to clean up, but that's okay because this is a bathhouse so we have the technology.

To do this, I have to admit to myself that these memories are not lies, that what I remember, what I can remember, is as authentic as any memory. These things come unasked as I walk into my new life, and I deal with them as they fester up, and it is awful, but so much better than letting them rot and infect who I am. So I won't use crayons, thank you, because they make me shake and burst into tears and remember being hurt with them. But I will be okay, because being able to identify why they do this is so much better than just blindly feeling the need to forcefully fling the box of crayons away from myself and huddle in the corner whimpering "no, no, no..."

And every time the memories come, every time these things are dredged up from the silt, there is less panic and terror. The memories are further away, less seated in my entire being. I can be more than the panic. More than the pain. I'm not sure what I'm doing, but I think I'm doing it well...