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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.

 

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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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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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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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The Cost of Remission

I am in remission from many of my chronic health things. Which isn’t to say I don’t struggle and I’m not in remission from others. I am not currently in remission from fibromyalgia/chronic pain syndrome (no, my doctors cannot decide which I have. Yes, it’s awesome), from neurofibromatosis, from my neurodivergent alphabet soup…but others I am in remission from. And it comes at an incredible cost.

There’s a delicate balance to keep this going. The things I will NEVER be in remission from and NEVER recover from can trigger the things that can be controlled to spiral again. My diet and my sleep schedule? Require to happen just so. And sometimes my other disabilities prevent that from happening. Which creates a vicious cycle, I know.

Remission doesn’t mean I’m healthy. It doesn’t mean I’m doing well, even. It means I’m doing marginally less sucky. It means that one aspect of my health is slightly less crappy than the other – and that’s not saying MUCH. It doesn’t mean I don’t still struggle. While I may not be actively puking violently from cyclic vomiting syndrome, I still struggle with nausea every day and often have to drug myself to get through. While I’ve been seizure free for years at this point, it doesn’t mean that one day (note: I do NOT have epilepsy. I had non-Epileptic seizures related to a medicine side effect but I’m told they could come back to haunt me) I will not have one again.

It’s hard. I still live in fear of remissions. I live in fear that my delicate balance will get thrown off kilter and that I will no longer be in remission. It’s just so HARD. I fight and I struggle and I try to LIVE and I am scared that one day I will no longer be able to. I am scared that one day I will be longer to be able to do the things I love. I had to leave my passions in school behind. I had to leave my dreams of a career behind. And it’s been a REALLY difficult pill to swallow. It’s been incredibly difficult to realize that yes, I am disabled and yes, I will always be. There’s no way to candy coat it, sugar coat it, make it prettier. I can’t work a job despite having some things in remission because others just aren’t and it isn’t feasible for them to be despite being on all the best medications.

I wrote this in the middle of the night, while listening to music, and scheduled  it to publish during my neurologist appointment. I don’t have a normal sleep schedule. I don’t have a normal eating schedule. Nothing about me is normal…and it’s a ticking time bomb in some ways. It’s a mess but at the same time, it’s my mess. It’s my life. I’ve accepted it. Embraced it. And am moving on with it. Because it’s all a part of who I am. The bad health stuff, the good health stuff, the alphabet soup of brain cooties. It all adds up to me. And while remission comes at an incredible cost… I’m okay with 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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Adventures with Anxiety-Girl: now with extra anxiety powers!

Hi, my name is Nora and I have anxiety.

I have officially diagnosed general anxiety disorder, OCD, and a smattering of phobias as well as suspected social anxiety. This makes life, well, interesting at times. Living with anxiety isn’t easy. Living with anxiety is kind of like living with someone who is constantly abusing and gaslighting me, only that person is me and lives inside my own head. It’s horrific.

I feel that a lot of times, people think I use my anxiety  as an excuse. No, it is’t that I just don’t want to make a phone call. It’s that I literally feel physically ill before making them. I often wind up shaking before and after making them. It isn’t just unpleasant, it’s literally uncomfortable and often times actually physically painful. I’ve had full blown meltdowns and thrown up simply because I have to make a phone call. It isn’t attention seeking, it isn’t guilt tripping. Making that phone call is sometimes actually, really and truly, impossible.

While I’m an introvert and hardly a social butterfly, I’m also bubbly and outgoing. I like going out and doing things. However, anxiety!brain is sometimes plaguing me with “what ifs?”. What if this happens. What if that happens. What if if if if if…and starts to spin me into a downward spiral of despair that is neither productive nor helpful.

I have been this way since I was a young child. I don’t know what it’s like to not have anxiety. I replay convos with friends over and over in my mind, before and after they’ve happened. I honestly had no idea that people existed that didn’t obsess over everything they said or everything someone else said. When I started texting, I didn’t know it wasn’t normal to panic over words on my screen.

Sometimes I’ve seen people ask “what’s one thing you wish people understood about xyz?” There isn’t one thing I wish people would understand. I just wish that people would realize that it ISN’T simple like that. Just understanding one aspect of it won’t magically make my life easier. Just understanding that hey, sometimes I can’t do the thing you want me to do or something I have to do things differently so anxiety brain doesn’t cause me to have a panic attack doesn’t really make a big difference. What I DO need you to do is to stop shaming us.

Different people cope with their anxiety differently. I choose to medicate. For me, it’s the best choice. I can tell a difference in when I take my meds and when I don’t. For ME, Nora, medication is the right choice. I will not, and should not, be shamed because I choose meds. However, for someone else, medication may not be the right choice. It may make it worse, or they may plan just not want to take medication. And you know what? That’s their choice too. Just because we have psychiatric disabilities doesn’t mean we should be denied agency.

Anxiety always has, and always will, be a part of my life. I’ll never fully live without it. Through self care and accepting my limits, that’s what living looks like to me. That may not be it to someone else, and that’s okay. But this is my edition of adventures in Anxiety Girl! Your milage may vary.

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Who I Am Hates Who I’ve Been

I am learning.

I was once racist. Ableist. Homophobic. Transphobic. Against myself, against my friends, against people I didn’t even know. I was raised evangelical conservative Christian. Anything outside of my bubble, anything outside of what I knew was really HARD to accept. Because, you see, I had the BIBLE on my side. I was RIGHT and they were WRONG. Their feelings? Didn’t matter. I am really glad social media wasn’t a thing when I was in middle school because I’m pretty sure I would have had an epic case of being a major butthead. I was pretty active online starting around age thirteen, and I outright cringe at stuff I wrote. And this was just on message boards and such! Twitter didn’t exist until shortly after I graduated and Facebook wasn’t open to high schools until during my senior year. My brunt of social media was on Myspace. Yeah. Myspace. 😉 And Xanga and Teen Open Diary and Neopets and, well, you get the picture. Social media was just a baby. And so was I.

I’m sorry for the person I became.
I’m sorry that it took so long for me to change.
I’m ready to be sure I never become that way again
’cause who I am hates who I’ve been.
Who I am hates who I’ve been.

I was young. The internet was young (at least, compared to the form it is in today). I am really glad that one of the Christian message boards I was active on (hi there, Zeeps!) kinda imploded because I’m sure I said some things that would make me want to hide forever now. But the message board literally doesn’t exist so you can’t find it. WHEW. Even reading back journal entries I wrote back when I started Forgotten Regret (my previous blog) in 2010, I cringe at stuff I said.

You see, I thought I knew so much. I thought I was so wise. I did say some good things. But I also said some horrible things. Because you know what? We’ve all done it at some points in our lives. Even if our -isms are internalized, even if we’ve never spoken our thoughts, it’s not something any of us are innocent of. But what matters is what you do once you know better. What matters is what you do once you are told that you need to sit down, shut up, and listen.

It’s hard for me, because I don’t want to admit that I’ve said some really awful things in my lifetime. It’s hard for me to admit that I was once one of the people who cracked “Adam and Steve” jokes. It’s hard for me to admit that I said things that are hurtful to some of the people I care about most. But I was wrong. And I’m sorry. And I’m doing my best to make it better. I’m doing my best to show I’ve changed. It isn’t easy. Change is hard. Heck, I’m autistic. I like things the way they are and I don’t like having to change. 😉 But I can change. Even though it’s hard. Even though it’s difficult. It’s a lesson we were taught in The Lion King, kids!  He said that change is good! He also said this:

““The past can hurt. But the way I see it, you can either run from it or learn from it.””

Yeah, the past hurts. Yeah, it sucks knowing we’ve screwed up in the past. But do we learn from our screw ups, or do we run from them? Do we accept we screwed up when confronted and challenged by things we said, or do we double down and gaslight people? Making mistakes is okay. What matters is what we do when we’re called out.

So I am pledging this.

I am pledging to do better. Know better, do better, they say. I am pledging to accept that I’ve made mistakes in my past. I am pledging to make amends to the people I’ve hurt. I am pledging to do my best to make things right again. It isn’t easy, but it’s good.