MAJOR TW: gory murder attempt on a child
I wanted to write an autism song today. I didn’t do that, though ideas bounced in my head all day. Instead I wrote this weird poem. I think it’s about language.
ABA for ASD
Your 504 and IEP
It’s all we are
So what are we?
I’ve never dealt with ADA
All I’ve got’s the OSA
That office overseeing
‘cause all they are able to see
Is how to coddle
Of those NTs, able-bodieds
Who want to make us
Able to be
All they are
That we cannot
Maybe OT Ought To
Be able to do
But all I am
And all I’ll be
Is letters and numbers
Until I get the IDEA
That I am me
and happy, see
To be Autistic
A spectrum with no “D”
Who doesn’t need
Autistic Conversion Therapy
And whose offices of Access
Don’t need condescending puns
But attitudes of self-advocacy
I do not
We’ll use these words
Some might write them
But I’ll do right by them
In fully elaborated
Last week, I read the ME book, Ivar Lovaas’s manual for parents on how to train a child through behavior modification. I even liveblogged my reactions to a set list of facebook friends. I’m going to compile those snippets here for everyone to see and read as they please, but I want to say something first.
I started out– and you’ll see this in my reactions, perhaps– with a flippant, how-bad-could-it-be, surely-I’ve-heard-worse attitude. Not to downplay the awful of the ME book, but surely I’ve seen some shit and it won’t affect me. Nothing affects me. I don’t emotions well.
But as you see in the increasing anger in my posts, it got to me. There’s something about reading a book designed to facilitate abuse, there’s something about this book, that just burns deep inside.
In the beginning, there was the Autism.
Fast forward like A BILLION YEARS to like, I guess the 1940s, the Autism descended from the Neurodiversitree and BIT A GODDAMN CHILD. This was definitely the first time it tried to eat someone, almost definitely yes. WOW. Suddenly, an autism, but people do a heckin confusion because it’s a babbin who got the bite so “childhood schizophrenia????” WRONG IT WAS AUTISM BAMBOOZLEMENT.
Fast forward to the 70s and 80s and everyone was so hot and bothered by the disco fever that nobody noticed when Doc Loves-Ass came on to the scene. “Hello I am Love-Ass, do not kink shame me or I will END YOU.”
Autism looked at Loves-Asses and said “okay but do you love the butt CONSENSUAL?”
“NO,” LoverButt said, “FOR I HaTe ConNSenT”
Then Autism kink shamed Loveass. LoverAss got INCENSED and said “BANNED, BANNED, AUTISM IS BANNED,” because apparently he can do that. So he invented ABBA and said “You all have to be DANCING QUEENS now, except you FEMININE BOYS, you may NOT be queens, you are also BANNED?” And he somehow though that if you blast ABBA at little boys who like pink they’ll start being GOOD STRAIGHT BOYS. Same for Autism.
In fact, Luvass wanted them all to be HIS KIND of dancing queens, so he insisted that the Autism only dance how HE wanted. “DO NOT MOVE YOUR HANDS LIKE THAT, INSTEAD GET DOWN WITH YOUR BAD SELF.” Also he beat them up.
Autism got ANGERY so it bit EVERYONE AT ONCE, except for the Neuropitiful I mean neurotypical, who suddenly noticed ALL OF THEIR BABIES WERE AUTISM. “It is a tsunami epidemic!!! tsunami” people cried. Various islands in Japan glare and shake their heads. White people. Gosh.
But the EPIDEMIC OF AUTISM was stronk. It started eating ALL THE BABIES.
2005. Suddenly a big heckin monster rises up from I guess the tsunami. Japan glares again but sighs. The monster says “I AM AUTISM SPEAKS, IT IS TIME TO LISTEN” Autism says “I NEVER SAID THAT BUT OKAY, ARE YOU MY FRIEND???”
“NO” Autism Speaks says and autism cries.
“I want to make you BANNED”
“Loveass already TRIED that, are you his ghost?”
Lovasssssss: I don’t die until 2010
“Oh” says Autism.
For the next 10ish years and also the future:
“Autism speaks go away you don’t even DO anything but make me SAD” Autism says
Autism speaks: no
Autism speaks: no, but I’ll stop saying cure and instead try to find the autism in your genes
Autism: I DO NOT DO A CONSENT
Loverass Ghost (he dead now); I hHatE CoNsEnT
Sometime during ALL These times, a Grand Temple rose from the ocean. Why is there so much water in this story? The Grand Temple said, “come unto me my Autism children, I am your savior.”
Then she pushes off like 90% of Autism and says “NOT YOU, YOU ARE TOO LOW-KEY”
“We don’t like you Grand Temple” said like most of Autism.
“GO AWAY I LOVE HER” Said the AssBurgers and the AssPies. Why so much food??? We do not know. Hey! Hans Asperger was actually a pretty cool guy you need to know that for the quiz. There is no quiz jk.
“But you are hurting your other Autism!!!” Said the low-key autism
“I DO NOT CARE WE HAVE ASCENDED WITH THE GRAND TEMPLE, we are… ASSPIE SUPREMES?”
But aspie supremacy was probably a thing before anyone like Temple Grandin, even her cows.
“STAHP” cried out Steeb Silverboy, “I AM WHITE NEUROTYPICAL MAN, HERE TO DOCUMENT YOUR STRUGGLE!!!”
“Will there be black people? Like more than one or two. Actually people of color in general”
“THERE WILL BE HISTORICAL RETROACTIVE DIAGNOSIS”
“But what about–”
Then everyone forever read the book. It was alright.
And that’s about it. There was also a muppet that nobody can remember for more than 6 months at a time and that’s it. That’s IT.
We’re taking a break from the regularly scheduled autisms (I SWEAR that ME book post will be up very shortly) to talk to something near and dear to my heart.
There is probably some fat pretty close to my heart, right? I’ve never excelled at anatomy. But I know the body has fatty layers abounds. Anyways.
I recently tried a ketogenic diet. I wanted to lose weight. Most of my family was doing it, both parents, sister, brother in law, sister in law, and then me.
I quit after a week. I had the “keto flu” according to most keto-ers I know, and hey. No ill will to those who live and love keto. But when I lost substantial amounts of weight before this, I never went through a period of my body going into crisis mode.
I’m bipolar. I’m… fatigued in general every day. I know what dead feels like and let me tell you, this was advanced darkness.
We put so much folk wisdom into “listening to our bodies” but when it’s time to lose weight, shut the fuck up body, you’re the enemy.
I don’t want to fight food. I don’t want to wage war with my body. But that’s what I’ve always done.
I’ve always been fat, or so the story goes. Actually, I don’t want to play this game. 99% of my life I wasn’t fat. But 100% of my life I’ve been told I was.
Recently I brought this up to my mom. “No, you were never heavy.” I used to diet with her. I don’t want to direct and rage at her, though. She has her own fat-demons and no parent is pure enough to keep those from getting to her child.
And so, when I was a kid– probably 9 years old, maybe younger, maybe a little older– I told my parents I thought I was fat. I had that spindly prepubescent child body. I got mad that they wouldn’t believe I was fat.
I’m not sure who told me I was fat. It’s easy to blame the media, or my shitty gradeschool friends. But whatever it was, when I was just a little goddamned noodle, I thought I was fat. I wish I had a picture handy of what I looked like when I was 9, just to laugh.
When I was 11 my neurologist told me to lose weight. I think I was 11, might have been older. I don’t remember what my weight had to do with my sleep paralysis.
Here’s a reference photo from later. Homecoming dance, 9th grade of High School. Look how fat I was.
(I loved this dress. Still like the color, but the cut was not for me. I should really recreate it.)
Also can we derail to talk about who in the hell did my makeup? Someone actually put that red eyeshadow on me and said it looked good. It was probably the girl who insisted pink wasn’t my color. She probably did my foundation too.
But yes. Those are the deathfats right there. I think I probably weighed 150 pounds then, 5 foot 4. I remember getting teased by this shit-ass group of boys about how I had to weigh like 200 pounds.
I’m sincerely confused. I wore a size 8 then. I think. According to a BMI calculator that was only 5 pounds overweight.
I dieted a lot. I felt bad a lot. I got bullied a lot, by those same boys. I remember being mad when girls on the internet who said they weighed 120 thought they were fat. I remember being mad when anyone said they were fat if they were skinnier than me. I was fat.
It was around this time that I went to a psychiatric hospital for severe suicidal ideation. I gained a lot of weight (I want to say I peaked at 165 pounds) because they basically forcefeed you there. It was to make folks with eating disorders eat. I was mad. I didn’t have a disordered relationship with food or my body. I was fat.
I took archery classes when I was 16 years old. I was nervous about being athletic again, being so fat. I had taken a girls athletics class in 7th grade, where the coach said to my mom that she’d rather have a million me’s than a bunch of the naturally athletic girls. Because I tried. I sucked so much at running, and the hardest thing I’ve ever done was run a mile in just under 10 minutes. I sucked at everything. Because I was fat.
But anyways. I took archery classes. I worked to pull back the heaviest bow I could. Here I am with it, very extremely fat, but I always liked these photos because they made me “look skinny.”
God if I could jump in a TARDIS right now and shake that girl so hard. Also correct her form, but mostly shake her. And congratulate her on hitting that little ball in the far right corner.
Now it’s time for the SWIM SUIT CONTEST!!!
19 years old:
Angeries at fatphobia, here. Also pictured is a picture of me, 4 years old, with a hamster. I was so much happier when I was skinny and had a hamster.
(hamster could not be reached for comment)
That suit has a weird little slimming panel in it, but you could still see my thighs! And my arms! In all FATTY FAT FAT GLORY.
See, there’s a reason these are swimsuit pictures now, instead of weight-obscuring action shots and obligatory homecoming portraits.
I learned I was fat. No, I learned I was always going to be fat. I apparently had no choice in the matter. My weight would fluctuate but it would always be deemed fat by society, doctors, shitfucker boys in 7th grade, everyone.
You can tell me I’m not fat, but honestly I’m so done caring. You can say it’s for my health but the health that worries me the most is in my brain, and I wouldn’t be surprised if what’s hurting it is the constant ping-pong of “just lose weight” “but you look so pretty.” I’m trying to improve how I eat, but even when I eat the best, when I exercise the most, I still have doctors telling me to lose weight. I’m still panting after a few minutes of walking, and nobody will bother to figure out why I have trouble breathing because “it’s probably just an extra 10 pounds on your chest”
Honey a hundred pounds ago I was panting for breath as my classmates teased me in gym class. As my coach said that I tried harder than anyone else.
So if exerting myself further than anyone else has to, if dieting myself ragged more than anyone should have to, if all of that doesn’t get me to a weight that the world deems acceptable? If it doesn’t fix the problems everyone thinks are “just weight”, then why the fuck am I doing it?
I’m so done trying to lose weight actively. If it happens, it happens, but there’s otherwise no goddamn point.
I wanted to for my wedding, yeah. But. I tried on dresses a few months ago.
I think I can deal.
(this post is a response to what I’ve been reading in Ivar Lovaas’s ME book, my currently private liveblog responses to which will be cataloged here tomorrow)
How dare you ask for love
When you have none to give
Unless Children can first perform for it
“Touch Nose” “Good!”
How dare you demand play
Under your rules
And deem their pleasure
A bizarre distraction
How dare you command a smile
But condemn a genuine laugh
Insist they find joy in their torment
While restricting how they show it
How dare you emphasize your needs
While capitalizing on theirs
You insist you need time off
They must always be on
How dare you say they manipulate you
You say their tantrums are communication
But not valid examples
And then you isolate, abuse, neglect until they show affection
How dare you use their bodies
Keep them hungry so food is a reward
Except when you need desperation.
How dare you talk about abuse
Like it’s therapeutic
And egregious examples
Like wastes of time at best
How dare you tire after your week
Of forty hours
And demand that a smaller human
Provide you with sixty
How dare you instill an idea into a society
That an entire cohort of people
Deserves all of this
And be called a hero
How dare you hurt these children
How dare you hurt these people
How dare you hurt my friends
How dare you hurt my people
How dare you take a person
Not someone who may become like a person
And break them
How dare you take a heart
Ready to love
Only wanting yours
And break it.
I recently dipped my toe into a project. A project to write a book on the history and culture of Autistic people. As soon as I tentatively, quietly announced this project, my fellow Autistics jumped to ask if they could help. People with blogs that have followers, people with advanced degrees, people who have written on Autism and in general in a professional sense. People who, in short, would know what the hell they were doing writing the history of Autistic culture. Me? I’ve known I was Autistic for 4, 5 years. I’ve done my best to learn as thoroughly as I can, but I’m small.
Standing next to giants.
Maybe they don’t know they’re giants, and maybe they’re not. Maybe they’re a bit smaller– half-giants, orcs, some of them high elves– but to me, the little one looking up, they’re skyscrapers. And right now I’m standing shoulder to shoulder with them.
None of them told me not to do this project. That I wasn’t qualified. They offered help, and I’ll take heaps of it, but nobody even suggested it wasn’t my place.
And there’s that phrase, standing on the shoulders of giants, that implies the giants came before you and paved your way. But in the Autistic community, it seems that the giants kneel down and hand you your bricks and mortar, and right next to you lay down the roads in tandem.
Maybe that’s part of Autistic culture. I’ve heard it referenced before, anyways. That social hierarchies are passé and working together, younger and elder, is how things should work.
Maybe that’s why I want to write this book.
Maybe that’s why I like it here.
There are a lot of messages in our culture about anger.
Basically none of them are good.
“Don’t fight fire with fire,” “hate breeds hate,” and the more recent, “love trumps hate.”
Sure, we get the messages on righteous anger, on passion. But more than anything we’re told that anger is useless at best, invalidating to our cause at worst. In the name of not dancing around my point, I’ll just state my guess as to why this is now.
Anger works, and the people in charge (of whatever power structure we’re fighting) know that. They know that anger, that passion, is what makes change happen, and they don’t want that. So they demonize it.
Or, perhaps, it’s just that anger makes people confront the demons that live within them, and we don’t like that. If someone’s angry at us, either we or they have done something wrong. It’s much easier to say that anger is the demon than to point at anything within ourselves.
The thing is, though? Anger works. Anger works so well. Active, angry passion is what shakes people out of their complacency long enough to learn. It’s what wakes people up to the fact that their actions are not okay. It’s what makes them not make the same mistake in the future.
Passive love and subtlety do almost nothing, save for win over people who are close to our side anyways. But when someone wants you dead, no amount of love will make them change. You could love them with all of your heart and more, and the only one who will change is you. You’ll learn. You’ll learn to be bitter, to be jaded, and that nothing you ever do will work. You’ll learn that you can’t change the world.
That isn’t true, though. It just takes anger. And sure, you can’t yell at someone enough that they’ll start thinking you’re a person. But you can yell at them long enough that they’ll know they can’t get away with verbalizing such beliefs.
And for those in the middle ground? Those who aren’t vested in their belief you’re not human, who just kinda… grew up that way? You might be able to reach them with love, but they may just take your kindness as an indication that your concerns aren’t serious, or your passivity as a message that you’ll continue to tolerate them regardless. After all, if this was serious, wouldn’t you be mad? And yes. If you get angry, they may go ahead and say that you invalidated your own concerns with your emotions– but they will never be able to say you weren’t passionate.
And passionate we must be– should be. Because they do want us dead. They would prefer we had cancer (and to illustrate how insidious this is, I wasn’t even looking for creepy, murdery parents’ books when I found that one). Indeed, many parents of Autistic people make us dead, because it’s much better to be a murderer than have a living child that couldn’t live up to your exceedingly high expectations. Especially with how often a murderer parent faces little more than a slap on the wrist for their crime. Sometimes they want us cured, or never born. We can go back in time to the olden ages of the early 2000s, when the Hear Their Silence rally spread hatred for those of us already living and extended a threat to those yet to be born, with a phone number of 1-877-No-Autism and message of unity around, I don’t know, our graves? You can see some emails around it here and here.
Do note where the anger really stems from, though. Either you call things out so kindly that nobody hears your voice, or you get angry enough that they start shouting back.
And again, the middle ground. The middle ground can be the hardest to reach with kindness, because you’ll approach them kindly, and then they’ll set up a Meeting to Discuss things after the damage is done Kindly, and you’ll discuss with them Kindly and they’ll discuss back Kindly and you’ll have another Kind Meeting but the thing is, at this point the damage was done about a month ago and there’s a good chance you’ve still made no progress at these meetings where you’re allowed no passion, no bite.
But the minute you’re shaking in front of an authority figure, your voice cracking, your eyes blazing in fury, and you tell them outright that what they’re doing is wrong, you get results.
So I’ll continue to be angry. I’ll continue getting results. And I’ll have friends, new activists usually, who will wonder why I’m so angry. Who will insist on trying things their way, the nice way, who want to be friends with everyone so that we can all get along.
I’ll let them, too. Because I had to learn, once, that kindness is moot when someone wants you gone.
I’ve been kicked off of a blog network for calling people out nicely, because those people were my bosses. I learned they’ll find a way to demonize you if they don’t want to hear your message, that they’ll remove you from sight regardless so you might as well take some blood with you.
I’ve learned that asking for written-down-rights to be respected in a psychiatric hospital leads to threats of solitary confinement. I’ve learned that backing down in fear leads to token gestures of goodwill while they still deny you basic personhood. What if I had been a brave child? Taken solitary, screamed and flailed against the walls in anger? I probably would’ve gone on to sue the hospital like I intended. But, the thing about those proper venues of anger– legal suits and such– is that they take energy that a mentally ill 14 year old doesn’t have.
I’ve learned that friends will leave you and groups will ostracize you when you ask them to be nicer about mental illness. I’ve learned that anger can’t change that, actually, but a burning vitriol will shine a light on who your real friends will always be. While, you know, the fake ones kick you in the gut.
So I’ve learned this anger. But the thing is? I shouldn’t have had to. My elder Autistics already learned these lessons on anger and effectiveness. If I had only met them sooner, I could have learned to harness my anger, grow my anger.
Maybe that’s what I’m doing now. I’m no elder, but I’ve been doing this for a while longer than many of the Autistics I know in person. Maybe I just want to write this out so they know why I’m angry, and know that they should be too.
And yes, you have to know how to use your anger. There’s a time and place for everything and nuance to every skill. But you can never learn to wield a weapon that you won’t pick up.
This goes out to all of the Autistics who spend more time fighting for their right to love puzzle piece rhetoric and the idea that they’re “high functioning”, more than they fight Autism Speaks, pathology, and paaaaarents.
My energy is endless.
I can do it all.
My possibilities, boundless;
I will never fall.
Except that I will,
Except that I do.
All this hate’s gonna kill,
Both me and then you.
But me first, I say,
Because I have the fight,
You can fight another day,
I still have the might.
And so I will,
And so I do,
And I’ve had my fill,
So where are you.
Are you waiting over there,
To tell them not to cure me?
Or curled up in your comfy chair,
Hoping that they won’t see?
My fight is endless,
And I can persist.
I can keep on standing,
I can make myself resist.
But I need you too.
I need you to listen.
Put down the blue,
Leave the puzzle prison.
Your functioning’s not high,
Those words pull me down low.
Why superiority, why?
When you won’t even go.
You won’t go to town,
On the ones who want us gone.
You hardly show a frown,
When they use you as a pawn.
But my fight is endless.
Yes, the fight is indeed.
But my power’s not boundless.
I, too, have a need.
A need for community,
Which has my back.
I have no immunity.
Together, we must attack.
But you won’t,
Because I will,
But you don’t.
Can’t take the pill.
That they hate you.
They want us all dead
And you won’t tone them down,
You can’t even touch red.
I’m so alone,
And it all so much hurts.
I should have known,
You won’t even spare words.
My fight is endless,
But I can’t keep trying.
I’m tearing myself apart,
I want my chance at crying.
My fight will have its end,
So take the baton.
My own wounds I’ll tend.
Now carry the red banner on.
A message to those of you who like puzzle pieces. Who identify with puzzle pieces. You are not a puzzle. You are a full person who is not missing pieces. You can say that you just find the puzzle cute; I can tell you that a history of dehumanization is not cute.
To those of you who think Autism Speaks is okay. That they are your friend. They are not your friend. They are trying to end you, they want to cure you, and they want to profit off of the suffering they inflict upon you. The last thing they want in the world is *you*
To those of you who use functioning labels. You want to differentiate yourself from the “other.” You want to make everyone know that you’re different from the bad Autistics, that you’re one of the higher level Autistics. Maybe you just want precision. Well, you’re being more imprecise with your labeling of people in binary high/low sense. And there is not a meaningful distinction between all “low” and all “high” Autistics, and many of us can be both at different times. We are all siblings on the Autistic spectrum, we don’t need to divide ourselves.
And a message to those of you who are okay with person-first language. Maybe it just looks better grammatically to you. Maybe you just lack a preference. But “Person with Autism” are not our words. They are the words of people who want to take the Autism out of the person, who can’t see a person if they see Autistic first. They are the words of accommodation offices and bureaucracies that want to appeal to parents. They are the words of parents. They are not the words of us, Autistic People.
So yeah. I’ve noticed these problems all over, primarily by new-to-the-culture autistics, and I think we need to sort them out. Playing with the tools of our enemy gives them legitimacy, and it’s not okay.