0

Smashing the OCD stereotype

I have OCD.

Yeah, I know. I’m not a neat person. My room is best defined as the name of one of my college radio shows, premeditated pandemonium. People find it hard to believe that I have OCD because I’m not a germaphobe and I’m not a neat person.

But it doesn’t change the fact I have OCD. OCD isn’t just about being clean and tidy. OCD is recurrent and persisting   thoughts.  OCD is about obsessions, not just compulsions. And those obsessions can take the form of thoughts. Of your brain looping things over. And over. And over.

Bad events that have never happened and never WILL happen loop in my brain. “What ifs” loop my brain. I check things that have been checked. Again. And again. I ask questions I’ve asked. Again. and again. I repeat myself. Again. and again.

Because I’m TERRIFIED of what will happen if I don’t. 

OCD isn’t just about being neat.

I don’t want these thoughts.

I don’t want my brain to be like this.

But I literally can’t control it.

I loop bad events that have never happened, that never will happen, in incredible detail in my brain. It’s terrifying. It’s scary. I feel like a horrible, horrible person. I’m not. I’m literally not in control of my brain and there’s nothing bad about me for being like this.

You see, OCD isn’t a one size fits all disorder. The stereotype of the Danny Tanner-esque germaphobe isn’t what OCD is for everyone, or even the MAJORITY of people! You can have OCD without obsessing over cleaning. You can literally obsess over anything. Your compulsions don’t have to be to keep things clean! Your OCD is still real and valid even without these harmful stereotypes.

0

Let that be enough

My hearts breaks every time I see a fellow autistic believe they are a burden. My heart breaks every time a fellow autistic thinks they aren’t enough. My heart breaks every time I see a fellow autistic think they don’t deserve accommodations, that they’re asking too much, that they should just suck it up.

You aren’t a burden because sometimes you need things reworded in a way that you understand. You aren’t a burden because sometimes you need silence and sometimes you need noise. You deserve to have a place you thrive in for work and school or anything, really. If that means you need noise canceling headphones, if that means you need to do it in a seperate, dedicated room – that’s okay! There’s nothing wrong with that.

If you need expectations written out and not just, well, expected  of you, that’s okay! That doesn’t make you a burden. Just because it’s not what the majority of the world seems to thrive on doesn’t mean it’s what YOU need to thrive on.

If you need to take a comfort object, if you need to stim, if you physically cannot sit still, that’s okay. You aren’t hurting anyone else by stimming, you’re doing what makes you comfortable in a very scary world.

Your existence is not a burden. . Neurodiversity is natural. You are WORTHY of the help and supports that you need to THRIVE in the world. Just because someone needs different, more frequent, or what you deem as “easier” accommodations, doesn’t mean that yours also don’t exist and that yours aren’t worthy.

The accommodations I need due to being autistic may be different than the ones someone else needs. That doesn’t make theirs more or less important than mine; it doesn’t make theirs more or less valid than mine. They still exist, because that PERSON exists. 

You are a beautiful, worthy person who just happens to be disabled. You’d beautiful and worthy and perfect without that disability, you’re beautiful and worthy and perfect with the disability. Accommodations make it so that you can enjoy and thrive in the world as you deserve to!

There’s nothing wrong with asking for help. It doesn’t mean you’re weak. There’s nothing wrong with needing supports. It doesn’t mean that you’re a burden. There’s nothing wrong with needing help sometimes.

You exist. You’re worthy. You’re loved. You’re valid.

And just for today, just for now, let that be enough.

0

Accepting Depression

I’ve made it no secret that I have depression and anxiety. It’s very much a key aspect of who I am. It shapes how I view the world, it’s the lens I make decisions through. It’s my very core – I don’t know who I am without depression and anxiety. Despite meds (which is my choice!), despite therapy (again, my choice – I am currently choosing not to be in therapy but that isn’t a choice I have always made or had the option of making), despite hospitalization in the past… it’s very much a part of me.

I don’t know who I am without depression. I don’t know who I am without OCD. I don’t know who I am without anxiety. And that’s not necessarily a bad thing. Part of accepting being disabled has been accepting depression. Accepting anxiety. Accepting OCD.

It doesn’t mean it’s not disabling. Oh lord, it doesn’t. It doesn’t mean I don’t learn coping skills or ways to navigate the world. That’s silly to think I don’t. But it does mean that I realize it’s a part of me and I make accommodations in the world to make it possible for me to get around. It might mean I need a friend to talk me down when anxiety brain goes haywire. It might mean that some nights I need someone to watch fluffy and/or crappy YouTube videos with me. It might mean that some nights I’m just a puddle of exhaustion and brain cooties.

And that’s okay, because it’s my normal. That’s okay, because it’s the person I am. Accepting my limits, accepting my flaws has been crucial in accepting who I am. It doesn’t mean I glorify it, by no means do I. I don’t think it’s amazing to be depressed, I don’t think it’s great to have soul crushing anxiety that impacts every little thing I do.

But I do think it’s okay to accept it.

I do think it’s okay to say that other people need to accept it if they want to be my friend and interact with me. I do think that it’s wrong that when many people find out that I am psychiatrically disabled, their immediate reaction is “you need meds”, “you need therapy”, etc before they even interact with me and find out why I am the way I am.

Accepting my disabilities has allowed me to accept who I am. It’s high time for other people to accept them now, too.

0

I reach out to the truth

Now I face out, I hold out
I reach out to the truth of my life
Seeking to seize on the whole moment to now break away!

Oh God let me out, Can you let me out?
Can you set me free from this dark inner world?
Save me now last beat in the soul.

My entire life I’ve been told there are so many things I cannot do because I am disabled. I’m a victim of both being told there are so many things I cannot do and that Ic an do anything I set my mind to. How these both work, I really don’t know.

As a result, I’ve been trapped in lies. Lies that I’m not good enough. Lies that because I’m disabled, I cannot achieve anything. I’ve been told that I need to not let my disabilities define me or hold me back. It’s confusing. And I need to find my own truth. Make my own truth. Find my own path.

Something I’ve learned is I need to reach out to my own truth. Reach out to it, even. Because it is within reach.

Because it doesn’t matter what I’ve been told. They were wrong.

It doesn’t matter what I believed.  It was wrong.

But what matters is the truth I know now and what I do with it.

 

0

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.

0

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.

0

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.

0

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.