Elaborated Humanity

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

Student Access“Ability”

‘cause all they are able to see

Is how to coddle

Sensibilities

Of those NTs, able-bodieds

Who want to make us

Able to be

All they are

That we cannot

BCBA

Then SLP

Maybe OT Ought To

Be able to do

Something

But all I am

And all I’ll be

Is letters and numbers

Pathology

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

Have ASD

Need ABA

We’ll use these words

Some might write them

But I’ll do right by them

In fully elaborated

Humanity

 

The Me book and My Autistic Reading

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.

Continue reading

The Theory of Autism: Full-on nonsense

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: STOP

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–”

“RETROACTIVE DIAGNOSISSSSSSS”

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.

So I’m apparently permafat

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.

Fat.

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.)

Homecoming

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.”

20120818_143815

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:

blacksoot

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)

Now, 21:

Bloosoot

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.

bepwed

I think I can deal.

 

How dare you

(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
Water, too.
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
A person
And break them

How dare you take a heart
Ready to love
Only wanting yours
And break it.

 

Standing Side by Side with Giants

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.