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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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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:

“A 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.

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Autism and Sexism

Many times, I’ve been told that autism presents differently in girls.
Many times, I’ve been told that girls are less likely to be autistic.
Many times, I’ve been told that male autistics are different.

I’m here to tell you that’s sexist.

Autistic girls are NOT different from autistic boys.

Autistic girls do NOT “present differently” from autistic boys.

This is sexist.

At one point, I thought it was eye-opening to read articles about how autistic females presented differently. And then I realized that was my own internalized ableism and sexism talking. Now I am ashamed of myself.

By saying it presents differently, we are erasing non trans and non-binary experiences. What does it say to someone non-binary, if we constantly talk about the diagnosis within the gender binary? We say that autistic males are xyz. We say that autistic females are abc. But what about those who are not? If you fit in those boxes, well, good on you. But we weren’t made to fit in neat little boxes. In fact, by clinging to these things, we are enforcing gender stereotypes. Which is bullcrap.

I know people who have come to their autism diagnosis by reading about how it presents in girls. Which is fine and dandy. But realize that those lists come rooted in sexism. You now know better, so DO better. A female doesn’t need a different form of support than a male because she’s female, she needs different forms of support because she’s HUMAN.

I don’t fit the neat checkboxes of autism in girls – I don’t have a high IQ because my learning disorders make IQ tests impossible. Despite being a straight A, honor roll student my IQ is actually quite low. This is called being twice-exceptional,  where I am so-called “gifted” but struggle with multiple learning disabilties (and the concept of gifted is problematic but that’s another blog post).

Many of my so-called “special interests” (oh mylanta, I hate this term. This is another blog post. That’s two, two blog posts promised in this one. -count von count voice-) line up more with what is considered boyish. If you google “autism in girls checklist”, you get dozens of super gross checklists.

Because I present as female, it doesn’t mean my autism is different than someone who does not. It means it is different because I am human. Just like anything else on my massive checklist of “how many things Nora has been dx’d with”, it is different from person to person. There is nothing unique about my autism solely because I have a vagina. It’s different because I am Nora. Yes, autistic girls sometimes present differently from autistic boys. But autistic girls present differently from each other, just like autistic boys do.

That isn’t to say there aren’t atypical autism traits. There are. That isn’t to say autistic women aren’t disabled. They are. That isn’t to say it isn’t sexist to say that girls are less likely to be dx’d than boys are. They are.

I’ve talked about this with my friends. Some of us male, some of us female, some of us non binary. My friend Leila said in one of our discussions that “all the articles etc. that I’ve seen about “Autism presents DIFFERENTLY in girls!” is all about how autistic boys are mathematical and logical and emotionally withdrawn, and autistic girls are creative, intuitive, emotional artist-types, and, like… that’s just regular old sexism with “autism” in front of it.”.

This is true. Think about it. If we remove the word “autism”, people would be PISSED. “But my son is a creative artist!” “My daughter is a brilliant mathematician!” Yep. But yet, somehow it’s magically okay when we try to make an autism dx fit gender stereotypes. We must question ourselves. WHY? We get pissed off when we try to assign stereotypes, but when it comes to neurodivergence, it’s somehow magically okay?

Why? Do we feel that autistic girls need coddled more? Do we need to make sure we know that they aren’t like THOSE autistics? It’s a form of supremacy, to be honest. And that’s ableist, sexism, bullcrap. Do we feel that they’re superior, because they pass better? (Newsflash: autistic females don’t. Some autistic females pass, some autistic females don’t. Some autistic males pass, some don’t. Some non binary pass…oh, I could go on all day. You get my point).

That’s not to say it isn’t okay to talk about autism and gender. It is. That isn’t to say that it isn’t important to boost female autistic voices. It very much is. Everyone’s voice needs heard – no matter what their gender is.

But when we say we want to smash gender stereotypes, when we say we’re feminists, when we say we’re for equality…we’ve got to include disability in that. And disability includes autism.    It includes realizing that even when we don’t realize it, our thoughts are often rooted in sexism. I’m guilty of it. I’m not immune to call outs. I even used to like and share those posts that talked about how different autistic females are, thinking I was helping my friends. Thinking I was helping making voices heard. Until I realized and questioned why I was sharing it. Until I realized that I was contributing to sexism. Until I realized that no one fits into that neat little box – myself included. Until I accepted that I don’t have to keep lying to myself, to who I am, to make myself fit into the “autistic female presenting” box. I’m still autistic. I still present as female. It’s okay that I don’t meet everything on that checklist – it doesn’t make my DX any less or different.

It’s sexist, plain and simple, to say that autistic females present differently. I think it’s important for us to discuss this. I think it’s important for us to boost female voices, yes. But that doesn’t mean that that, in and of itself, has problematic roots. It means that we realize that we don’t present differently because of what our bits and pieces are or because of what our gender is, but it’s simply because we’re HUMAN and we each have our own jam

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I didn’t graduate college, and that’s okay.

I didn’t graduate college.

I have a massive pile of debt. Debt I will never be able to repay. I have loan companies calling me daily telling me I have to pay when it’s literally impossible. I have a cap and gown that I’ll never wear. At times, I still daydream of the degree I wanted so desperately and came so close to getting.

I didn’t graduate college.

College classes aren’t designed for disabled students. While schools have disability services, they aren’t always to make classes Nora-compatible. My immune system is too week, I get stressed out too easy, I get  too severe of sensory overload, I simply can’t people, oh, you get the picture. They can’t custom craft a class to be perfectly okay for me, because then it would make it inaccessible for someone else.

Part of learning, part of growing, part of acceptance has been coming to terms with the fact I won’t get my degree. I was merely a semester and a half away. But my classes cannot be completed in the state I am now. I didn’t graduate college.

But I am not worthless. The fact I don’t have a degree doesn’t mean that I failed as a person. It doesn’t mean my classes were worthless – I learned a lot. It doesn’t mean that I am worthless – not everyone gets a college degree. I still write a blog. I still advocate. I’m still an activist. I still do so many fun things with my life!

I don’t have a degree. Sometimes I do get stir crazy without classes or a job, hence why I’m trying to find a volunteer thing. I’m not happy just sitting around doing nothing on the days when I feel well enough to do things. I try to do what I can, but it’s really hard when society is designed to go against disabled people.

But I am worth it. I am worth trying. I am worth doing things. And that worth isn’t defined by fancy letters after my name or a really expensive piece of paper.

 

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Beyond awareness

It’s time to go beyond autism awareness. People are plenty aware that autism exists. Every year, the number of autistics murdered by their caregivers grow. This isn’t from a lack of awareness or services. This isn’t from people not knowing awareness exists. Awareness does little for us anymore and in reality, awareness is ableism in a prettier package.

It’s time to go beyond autism awareness. Awareness is Autism Speaks. Awareness is furthering the cycle of our abuse. Of eugenics. I don’t want your awareness. I don’t want you to light it up blue. I don’t want you to talk about what a tragedy it is to be autistic. I don’t want you to talk to me about how some autistics are superior.

Awareness is bullshit. Awareness is being told that I’m not like “those autistics”, because I attended college. Despite the fact I dropped out, due to a combination of my needs not being adequately met. One of those being my autistic needs. Awareness is telling me that I’m not like THOSE autistics who will never leave home, despite the PCA mess I had and wound up unable to live completely alone anymore.

It’s time to move beyond awareness.

It’s time to move toward acceptance.