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To the autistic child

To the autistic child,

Hi! I see you. My name is Nora and I’m an autistic adult. We’re pretty awesome, if I do say so myself. It isn’t easy being autistic, and I wish there are some things that I had been told. That’s why, little one, I’m writing this letter to you. You may not know me, but maybe someday we’ll get to meet each other. Maybe we never will and we’ll only talk on the internet. Either way, you’re loved and so very amazing. Your brain is so COOL! Isn’t it nifty how different people are? Isn’t it nifty how different brains can be?

I don’t want to sugar coat things. Sometimes it’s hard being autistic. You know all those bright lights and loud noises? Yeah, sometimes I want to melt down, too. And sometimes I do. My brain just gets all these signals from different directions all at once and cannot tolerate it. And you know what? It’s okay. It hurts, and it’s okay to let people know we’re hurting. People may get annoyed or frustrated when we melt down, but we simply don’t have the words to articulate what’s going on inside our heads. And you know what? That’s okay. It isn’t our fault that sometimes we’re overwhelmed.

Sometimes, you know those little movements we make? We flap our hands, we rock back and forth, we spin around. We fiddle with toys in our hands or we wear special bracelets or necklaces. Sometimes we chew our shirt collars. Sometimes we make certain sounds. This is called “stimming”. Sometimes it calms us down, and sometimes it makes us feel good. You know what? It’s okay. It helps settle us down in a big, scary world. If it doesn’t hurt someone else, it’s okay for us to do it. Part of taking care of ourselves is doing things that helps us cope, and so that’s why we stim.

Sometimes we find a topic we like and just want to talk about it a lot. Our brains are like soil – the little info seeds take root and grow into various things we just love to talk about. Some people call them “special interests”, others call them “obsessions”. I just like calling them “interests”. Sometimes we just kind of info dump on them, which means just blurting out everything we know about the subject. This is okay! It’s part of what makes our brains special.

Maybe you have trouble doing, what many call, “using your words”. I don’t like that phrase. Words are hard. Not everyone can talk with their vocal cords, and that’s okay! Some people use sign language, which means they talk with their hands. Some people use what’s called AAC, which means they use a special device or iPad app to talk. They type the words into it or tap a picture, and it says their words for them. Little one, all forms of communication are valid. It doesn’t matter if you speak it, move it, or tap it – your words MATTER and we (the autistic community and those who love you) want to hear what you have to say.

Sometimes when we talk to people, we use words we’ve said before. Or maybe phrases we know from video games, TV shows, movies, or books. Or maybe phrases we’ve made up that have special meaning. This is called “scripting”. Sometimes, when we’re asked a question we just repeat it back. For example, maybe we’re asked “Do you want milk or juice?” We might just say “or juice”. This is called “echolalia”. Sometimes people got frustrated that we don’t seem to understand what they’re saying. But most of the time, we do. We just are communicating in the best way we can. But when people can learn our scripts, we can adapt and learn to communicate with them in a way that’s accessible to everyone.

People WILL sometimes talk about you right in front of you. People WILL sometimes say you don’t understand what they’re saying about you, because you’re autistic. People who say they love you may say mean things about you in front of you. People may record your most vulnerable moments, and place them on the internet for the world to see, claiming to raise awareness for you. They’ll claim you don’t understand. I know you understand. You may not look like you’re paying attention, but in your own way you are taking in the world around you. But even if you feel like no one else understands you and no one else loves you, know there’s one person who has never met you who would move the world for you, if she could. Know there is one loyal, passionate person who is fighting for your rights as an autistic child.

Precious child, you are fine as you are. You don’t have to change to fit in. You don’t have to be not YOU in order to be loved and accepted. Some people are autistic. Some people are not. You’re autistic. It’s okay to say no, even in a world that teaches you to say yes and obey every order. It’s okay to let people know you’re in pain. It’s okay to stim. The world wasn’t built for autistic people, and we have to learn to live in it in whatever way we can. Sometimes, people don’t understand our ways but that’s okay, because we don’t understand their non autistic ways!

I hope that one day you find acceptance, and not awareness.

Love,

Nora.

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Video Games & Me

I play a lot of video games. I recently worked my way through Mass Effect (currently on Mass Effect 3). I’m currently playing Persona 5. I recently played Tales of Beseria and Final Fantasy XV (yay for roommates with PS4s! ūüėČ ). I’m going to be working my way through the Dragon Age franchise next (I’ve only played part of Origins). My favorite games of all time include Fire Emblem: Awakening, Tales of Graces F, Persona 3 Portable, Final Fantasy IX, and Super Mario RPG. Video games are a big part of my life.

Part of it is due to being an introvert, part of it is due to just being able to CONNECT. I relate to the characters, deeply. I have a hard time explaining myself, a hard time defining myself. But games? They give me a way to connect. They give me a way to relate. They help reinstate that I am not alone, that there are others like me out there. And they can become beloved characters.

It’s funny – I’ve been told I shouldn’t waste so much time on video games. But video games have given me friends. Video games have taught me life lessons. Video games have been a positive impact on my life, and I’m so glad I have them.

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Sometimes I’m not okay

Sometimes it’s hard being disabled. I talk a lot about how I’ve accepted it and I’ve talked a lot about how I’m at peace with some of the paths I’ve walked down. I’ve talked about how many doors have been shut, and some of the windows just haven’t opened.

But sometimes I’m not okay with it. Sometimes I am just very frustrated with being disabled. I long to get a job, I long to work, I long to do something more with my life than typing on a keyboard or staring at a square device in my hand. It’s hard to see my friends and whatnot working jobs when I know it’s out of reach for me right now.

I try to accept it. I try to say I’m okay with being disabled. And, you know, for the most part I am. It’s the card I’ve been dealt, I’ve accepted it and made the most of it. But yet… sometimes it’s hard. Sometimes I wonder what my purpose is. Why I will be like this… I just find myself questioning WHY.

And I wish I had an answer to why I’m sometimes not okay.

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Child Abuse Awareness Month

April is child abuse awareness month. I don’t need to say in¬†what ways I was abused, because in all reality, it doesn’t matter. I was abused. End of story. The details are for me to disclose when I want to, not for you to decide if I really was abused or not or if my parents “meant well”. I lived there. You didn’t. I am discussing various types of abuse here, so you might be able to figure stuff out based on this and previous blog posts. That’s okay. But I’m trying to keep this particular post vague in order to help people relate.

That said, here is a handy dandy list of NOT helpful things to say to me! Note, this may be different for other child abuse survivors. This is helpful to ME.

DO NOT SAY:

“Well, I was spanked and I turned out fine. Why aren’t you fine?” You didn’t live my life. Spanking is a very controversial topic, and I request that on this specific post you don’t debate it. I did not turn out fine. End of story. Don’t say that to this¬†child abuse survivor, mmkay? (Seriously, do NOT turn this into a spanking debate. That is a firm boundary. I have a very strong opinion on it and others do, too. DO. NOT. DEBATE. THAT. HERE. AT. ALL. Any comments on Facebook about it will be swiftly deleted.)

“Oh, I’m sure it wasn’t that bad.” It was. You didn’t live it. The end.

“I’m sure your parents LOVE you!” They sure did a crappy job of proving it. Doesn’t help to hear that when I have PTSD.

“Well, my parents did XYZ to me, too, and I don’t have PTSD.” That’s nice. I do. I’m glad you had a different childhood than I did (seriously! that isn’t snarky!) but I have PTSD as a result of mine. It isn’t helpful for me to hear “well, I don’t have PTSD” because then my brain warps into bad places and it just isn’t good.

“Don’t you think they meant well?” Sure. Maybe they did. Maybe they didn’t. Doesn’t matter. I was abused.

“But all parents love their children.” Nope.

“They had their own “mental illnesses”. I have an alphabet soup of mental health bullcrap. I don’t abuse people. NEXT.

“That was over twenty years ago that XYZ happened. Why aren’t you over it?” Didn’t know my trauma had a deadline.

“I’m sorry that happened to you.” This is one I’m iffy on. I prefer the wording “I’m sorry someone did that to you” because it takes all the internalized blame off myself. Saying “that happened” makes it sound like it was something out of someone’s control. Someone had control. It wasn’t me. Someone did it to me. It didn’t just “happen”.

“Well, at least emotional abuse doesn’t leave scars.” I have no polite words for that one. And I’m trying to keep this post PG rated to make it more shareable. But… you know the whole “sticks and stones may break my bones, but words will never hurt me?” I believe that’s bullcrap. I also believe there is no form of abuse without an emotional counterpart because of how abuse plays with your very mind and innermost thoughts. So, there IS no ‘just’ emotional abuse. Emotional abuse is the very core OF abuse.

“Did you ask you ask them why they treated you that way?” Um, no? And get abused further? I was hurt once. Their side of the story? Yeah, they lost their right to that when they chose to abuse me. They don’t get to tell their story.

“Put yourself in their shoes.” No, wear our shoes. WHY do we only challenge people to wear the abusers shoes, but not the victim’s shoes? Ask yourself this question. Seriously, why? Why is it never “walk in the child’s shoes”?

“I don’t know how you turned out so normal.” Well, okay? Normal is only a video game difficulty setting… I’ve¬†jokingly¬†said it, but things I say in jest and things people say to me are two different things. I wince so hard at this one.

“But you denied xyz abuse for years! YOU’RE LYING!” No, I was trying to protect my abusers. It’s pretty common. I have psych records saying that even though I denied it, it was strongly suspected. But that shouldn’t even matter.

I am a child abuse survivor.

Do not say these things to me.

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Autism Speaks hasn’t changed – or why the Mighty still sucks

A couple years have passed since I started writing this blog. It’s pretty shocking to me, anyway, to see how many of my viewpoints have changed. Some of my early posts are cringe worthy (especially the ones I imported from my previous blog – Forgotten Regret). Some things will never see the light of day again. Others I’ve left, to show how I’ve changed and grown and adapted.

Some things haven’t changed. Autism Speaks, for one. Their wording has changed to sound prettier, but they’re still pretty horrific. And now, they’ve partnered with The Mighty. The Mighty is, well, pretty mighty awful. Here¬†is a pretty good post on the epic meltdown bingo card, with further links and reading on it. I suggest reading through it.

I thought that maybe the Mighty would change. I was, well, mighty wrong. (I wonder how many times I can do this…?). And now they’ve officially partnered with Autism Speaks. Before you support any charity, I suggest reading this¬†article. Autism Speaks is pretty much all of this embodied.

The Mighty says they want to amplify autistic voices.

And yet…

They’ve partnered with a so-called charity that doesn’t want us to exist. That blocks autistics for speaking out against them. That… I don’t even know?

But they’ve proven one thing to me.

They haven’t remotely changed.

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Ableism is…

Ableism is when you say that I’m not like those disabled people.

Ableism is when you see someone helping us, and your first thought is to take a photo.

Ableism is when you don’t let us do things for ourselves before offering to help us.

Ableism is when you speak over us and for us.

Ableism is when you get mad at us for not being concise in our speech.

Ableism is when you get mad at us for repeating ourselves.

Ableism is when you shout out “but not all *insert word of the day here*.

Ableism is when you expect us to be happy with what we have.

Ableism is when you get mad you have to reword something.

Ableism is when you’re upset we cannot always control our pitch/volume.

Ableism is when our stimming upsets you

 

Ableism is when you try to change us.

Ableism is when you have standing room only.

Ableism is when you get upset at the person in front of you for not walking fast enough.

Ableism is when you refuse to listen to our voices.

(IMPORTANT NOTE ON THE STIMMING ONE. Dual access needs are a thing here. For example, I can’t stand the sound of pens clicking and it sends me into sensory overload. ¬†But for others, that’s a comforting stim. This is called conflicting access needs, and can, shockingly, be accommodated.)

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Awareness vs Acceptance

Awareness is talking about all the ways we are not like you.

Acceptance is talking about what makes us US.

Awareness is about trying to change who we are.

Acceptance is meeting us where we are.

Awareness is trying to change our behavior because it annoys you.

Acceptance is encouraging it, because it comforts us.

Awareness is talking about all the things we cannot do.

Acceptance is talking about all the things we can.

Awareness is “special interests”.

Acceptance is listening to our knowledge and infodumping.

Awareness is talking about trying to cure us (Which is eugenics. The ONLY cure for Autism is to ensure we don’t exist. I’m pretty sure being alive is better than, well, not).

Acceptance is adapting the world to us.

Awareness is talking about how tragic our lives our.

Acceptance is celebrating the fact we’re alive.

Awareness is Autism Speaks and Julia the Muppet.

Acceptance is Autism Women’s Network¬† and PACLA

Awareness is changing your child…

Acceptance is changing the world.

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A heart made fullmetal

I’ve been getting more questions than usual about my URL lately, so I’m taking a break from autism acceptance pieces to finally sit down and write a piece on why I chose my domain and blog title. It comes from the AMAZING anime, Fullmetal Alchemist. And these two quotes:

‚ÄúA lesson without pain is meaningless. For you cannot gain something without sacrificing something else in return. But once you have recovered it and made it your own… You will gain an irreplaceable Fullmetal heart.”

“There’s no such thing as a painless lesson, they just don’t exist. Sacrifices are necessary. You can’t gain anything without losing something first. Although if you can endure that pain and walk away from it, you’ll find that you now have a heart strong enough to overcome any obstacle. Yeah… a heart made Fullmetal.”

If you haven’t seen FMA, well, you should. Even if anime isn’t your jam. Because it’s that good. I can’t say too much without going into spoilers, but basically guy-loses-his-arm-and-leg-and-his-brother-becomes-a-robot-thing-so-they-try-to-become-human-again. Yeah. Well.

I’ve had a lot of pain in my life. And I’ve made a lot of sacrifices. Life hasn’t been easy for me. And I have rods in my back, which I joke are my own personal automail.

My own heart became automail. My own life became making myself strong enough to recover from the pain thrown at me. It hasn’t been easy. But it’s been worthwhile. It’s been a piece of making my heart strong enough to overcome obstacles.

Hard? Yes. Worthwhile? Well, I wouldn’t want these things to happen to me again. Or anyone else. But it made my heart fullmetal. It took my life and made me stronger. And I’m the champion as a result.

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Awareness and light it up blue and stuff

Or: why this day is bullcrap.

I am mostly off Facebook today. I can’t deal with “but I light it up blue not for Autism Speaks”.

Light it up blue is an Autism propaganda campaign, pure and simple. 

Yep.

Autistics have said, for a long time  that this is harmful.

But.

We are told to shut up.

We are told you are not like my child.

We are told to be grateful we can speak out.

Can’t we, though?

Can’t we be grateful we can speak out and still speak out against ableism?

Can’t we tell you WHY this hurts of?

Why are you clinging on to light it up blue?

There are other¬†acceptance¬† campaigns. They aren’t mainstream enough for you like LIUB is? Then MAKE it so. LIUB had to gain momentum somehow, you know.

Think about why you’re clinging to it. Is it because you like it? Is it because you think it’s all there is? There’s more. There’s more beyond Autism $Peaks.

You just have to look for it.

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On Julia and awareness

So as any of you likely know, I am obsessed with Sesame Street. I have shirts. Plushes. DVDS. VHS tapes. Soundtracks. Yeah, I like Sesame Street.

So I like Julia, right?

WRONG.

If you haven’t been following along, Julia is an autistic muppet. ¬†And she was created for autism awareness. And there’s the problem.

Julia is about awareness. Not acceptance.

Julia was co-created by someone who calls himself the Autism Daddy. Who calls his kid “king shit” to his face. Don’t give me that “his kid doesn’t understand!” bull. He does. He KNOWS.

Julia is everything that’s wrong with the awareness movement.

Prominent autistic self-advocates have been told to shut up.

That we should we grateful for what we have.

That we are ignoring labor put in by critiquing  Julia

I think some people had great ideas for Julia.

I also think just banking on those is ableist and silly.

I think it’s silly that her puppet master is a parent . Why not an autistic person?

I think it’s silly that they use person first (er, muppet first?) language despite ASAN working with them and ASAN being adamant about ID first.

I think it’s silly that when actual autistic people speak out, we are silenced.

Why do you want to parade us and token us except for when we challenge you?

Think about that.