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Autistics and self diagnosis

I see a lot of bullshit in autism and autistic communities about those who self-diagnose. They try to say that their identity isn’t valid, or that they just must not be autistic enough, or a whole slew a thing. There’s a plethora of problems with this.

First of all, read this.

And now we are going into my personal beef with people who bash those who self-diaganois.

  1. It is classist. Testing is expensive and often not covered by insurance.
  2. The testing is EXTREMELY taxing and emotionally overwhelming. The fallout from testing can be sometimes not worth getting the official DX.
  3. For some. once the official DX is in your medical chart, it can cause doctors to be ableist and ignore other very real problems, brushing it all up to autism.
  4. Getting a DX can literally endanger lives as autistics are more likely to be murdered at the hands of police – even when they know the person is autistic.
  5. It doesn’t stop the “you’re not really autistic” bullshit.
  6. Even if you can afford the testing or your insurance covers it, if you don’t find a provider you’re comfortable with, the testing results may not be accurate
  7. You still could be misdiagnosed and this can be soul-crushing.
  8. You’re still denied either agency or resources
  9. You don’t escape the functioning labels. You’re still labeled as “smart”, “high functioning”, or “mild” and hearing doctors throw around those words in relation to you all the time sucks ass.
  10. It’s sexist. Women are less likely to get the official DX. Not only that, this excludes gender non binary people, which is another problem all together.

 

Next week I will write 10 more reasons why denying people the right and freedom to DX themselves is problematic at best.

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April may be over

At long last, April is over. Let me relish in those words: April is over! I don’t think that’s sufficient, but that’s okay.

April is over, and that’s such a relief. But on the other hand, it isn’t. Why? Ableism is still rampant. People still hate me. I’m still autistic and I’m still a marginalized class.

You know what else isn’t over? People literally wanting me dead. People literally not wanting me to exist, all in the name of a cure. I’ve said it once, I’ve said it twice, I’ll keep saying the damn thing – the cure is eugenics.

As long as I’m on the Internet, people will insist on using functioning labels. High functioning. Low functioning. Mild. Severe. “Your autism isn’t that bad.” “You pass as neurotypical.”

Shut the fuck up.

And I’m going to guess that more people are offended by the fact I just dropped the F bomb than the fact I said that wanting to cure autism is literally wanting to prevent our existence.

April is over. Hooray. But you know what isn’t? Autism Speaks. They still hate us. All of us. Every. Last. One. Of. Us. They still want us to be dead. Yes, dead. They still want us to pass. Even when we cannot.

April is over, but awareness isn’t. Paaaarents are still wailing that we don’t know how hard they have it. That we are not like their child. Breaking news in  at 2:05 am central time: your autistic child will become an autistic adult. There is no such thing as an adult child.

April is over. But I am still cyber-bullied for being autistic. Other autistics are still bullied across the internet – in both autistic and autism (there is a distinction, but that will be a future blog post) communities as well as the neurotypical world. People who self-dx are told they are not valid and that their diagnosis isn’t real (even when it very much is and again, that’s another blog post), people with professional diagnosis are told they’re “not really autistic”. And still others will claim that we’re “all a little autistic.”

April may be over. But I still have to write about what it’s like being an autistic adult. I still have to fight for agency and basic rights that a neurotypical person would get without a second glance. I still have to speak up for injustice. I still have to continue being a social justice cleric. There is no rest. It’s still rampant. It’s not in your face and while EVERYONE may not notice it it’s still there and it still hurts. And you know what? It never stops hurting. It never stop hurting, no matter how many times insults like the R word are flung at me. It still stings.

April may be over, but autistic children and adults are still murdered in cold blood by their caregivers. They’re still abused. They’re still subject to abusive therapies like ABA. They’re still told they’re not good enough, they need to pass, they need to stop doing the thing. It’s still happening. You’re just not aware of it. Or maybe you just don’t care, but I’ll pretend that’s not the case.

I am so glad that April is over, but the oppressions are not. YOU just notice them less. (And by the way, GameStop did not stop supporting Autism Speaks because of a petition or they know their fan base. They stopped because April is over).

Image description: purple background with a yellow circle in the middle. Lighter purple text reads "April may be over, but the aggressions never are."

Image description: purple background with a yellow circle in the middle. Lighter purple text reads “April may be over, but the aggressions never are.”

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Do you know what ableism is?

Image is of a pink hot air balloon against blue clouds. Text reads "Ableism is living in a world that is not equipped for me.

Image is of a pink hot air balloon against blue clouds. Text reads “Ableism is living in a world that is not equipped for me.

 

 

Do you know what ableism is? Do you know what it’s like to live your life when ableism is facing you literally every time you turn around? Do you know what it’s like to be disabled in an ableist society? Do you know what it’s like to be autistic in a world that’s crafted for neurotypicals? Do you know what it’s like to be physically disabled in a world that actively oppresses your very existence? Ableism is living in a world that’s not equipped for me.

I am Autistic. Ableism is when people insist on erasing my identity, and calling me a “person with autism”, despite the language I have chosen for myself. Ableism is when people force me to look into their eyes, even when eye contact is physically painful. Ableism is when people judge me for stimming in public. Ableism is when people refuse and try to make me into something that is actually impossible for me, due to being Autistic.

I have major depressive disorder. Ableism is just telling me to have more vitamin C, exercise more, get out more, etc. No! This will not help my depression. What I need for you is to listen to me when I tell you how to support me. Not to scold me for making the choice to be on antidepressants. Not to belittle me for the way I cope.

I am physically disabled. Ableism is telling me to stop seeing so many doctors. To just have a more upbeat attitude. This is not acceptable.

I have cognitive and executive functioning problems. Ableism is telling me to just get over it. Ableism is telling me to suck it up and do it. Ableism is telling me that you believe in me and I can do the thing, even when the thing is actually impossible for me. It isn’t as simple as just getting up and doing it. I actually cannot. I am not wired that way.

Ableism is when parents tell me I am not like their child. That I am so high functioning. Ableism is insisting on using functioning labels, even when I tell you that I don’t like them and in fact, actively oppose them. Ableism is insisting on calling my impairments mild or severe, despite the fact that some aspects are mild and others are severe. It isn’t black and white like that.

These are aspects of ableism I face in my life every single day as a disabled adult. Feel free to comment on what ones you face. I know I’ve missed so many as ableism isn’t a one size fits all and something every single disabled person faces.

 

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Ten years ago…

Ten years ago, I was a senior in high school. I had so many hopes and dreams. I had plans. I had ambitions. I had been dealt a pretty crappy hand in life, but I was determined to make the best of it. I was going to graduate, and I was going to kick ass and take names. I was going to get a job. I knew what I wanted to do in my life. I was young. I was naive. I had no idea what was in store. There was so much I didn’t know. But I knew I wouldn’t let my illness hold me back.

Image is one of my senior pictures: A brunette female with wavy hair. She is wearing a blue sweater and khakis. She is sitting behind the numbers 06.

Image is one of my senior pictures: A brunette female with wavy hair. She is wearing a blue sweater and khakis. She is sitting behind the numbers 06.

I was confident, and scared, all at once. I was graduating against seemingly impossible odds. I was told how amazing, inspiring, faithful I was while inside, I was falling apart. I was told I had a promising future – I was bright. I was smart. I was bubbly and passionate. Against a world that seemed determined to pull me down, I would prevail.

But that summer, my grandfather died. That fall, I enrolled in college for the first time. Both my physical health and my mental health completely fell apart and I spun so out of control I was asked to leave the college. That was the first time I dropped out of school, and it wouldn’t be the last.

Later on that year, I was admitted to the psych ward for six weeks, going into the beginning of 2007. And then I went to a group home. It was hell. Everything I had hoped for. Everything I dreamed. Gone.

 

Five years ago, I was transferring colleges. I had dropped out one other time and had finally completed classes. However, the college I was at wasn’t meeting my needs. I was preparing for back surgery before transferring colleges. I wasn’t the person I thought I would be. My career path had changed. But that’s okay – part of life is growth, right?

Image is a brunette female holding chopsticks.

Image is a brunette female holding chopsticks.

But that surgery didn’t go as anyone planned. I wound up with more doctors, more specialists, more pain, and eventually another surgery. I was still hopeful. I was still, as I like to say, kicking ass and taking names. I am stubborn and I fight like hell for what I want. This is both a blessing and a curse. My doctors would literally have to threaten me with inpatient treatment if I didn’t skip class because I was so determined to do well. For so long of my life, I had put worth in grades and doing well in school and dammit, this wasn’t something they could take away from me.

But it all came screeching to a halt. Despite modified course loads, despite every reasonable accommodation possible, I dropped out of college yet again. For seemingly the last time. My hope was gone. I was a semester and a half away from graduation. I was so close I could taste it. I could imagine the feel of that diploma in my hand. It was what I had worked toward for so many years… and it was gone.

That brings us to today. I’m sitting at Starbucks sipping an iced Americano. “You Can’t Stop The Beat” from Hairspray is playing in my earbuds. I never imagined that my life at 28 would involve being an activist and an advocate. I never imagined I would find things I’m passionate about. I never imagined that I would still not have that degree ten years ago. I never imagined that my medicine list would be so extensive that I would have a nurse come fill my med dispenser every week because I could not keep up.

Image is a brunette female. She is wearing a green sweater, a blue t-shirt, a blue and green tutu, black tights, and silver shoes.

Image is a brunette female. She is wearing a green sweater, a blue t-shirt, a blue and green tutu, black tights, and silver shoes.

But I am living. I am thriving.  I have a life that I could never imagine. Because of my autism and disabilities, I have an amazing circle of friends I would never have otherwise. Because I am stubborn, I found something else to throw my passions and love into.

Ten years ago, I was eighteen years old and frankly, didn’t know anything about life. I thought I knew it all and was likely a cocky asshole. I knew I would get that degree. I knew I would do well in college in spite of my disabilities, and I cringe at that language now. I knew that my life would turn out just the way I want it.

As the John Lennon lyric states “Life is what happens to you when you’re busy making other plans”. Everything changed. And it is all a beautiful, messy mess. It’s all a part of who I became. And I love it. Back then, I was Angelique – young and naive. But now I am Annora. I am strong. I still have  a future ahead of me. I may not be working in the way I thought I was and I may not be making a difference in the world like I thought I would be – but I am slowly changing my own world.

I am living. I am thriving. I have depression. I am autistic. I have OCD. I had PTSD. I have a list of medical disorder’s that is so long that I have to carry a list. I take so many medications that pulse through my body, keeping me alive. I never imagined this would be my life. But you know what? Because of it, I am thriving. Because of it, I have a great life. Because I am autistic and disabled,  I have a life that is worth living.

My life is beautiful.

My life is mine. It may not be what I thought it was and even one year from now, it may look vastly different. I’ll look back on this and laugh. But this is what it is right now and it’s good enough.

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I am Autistic

When the words are spinning and everything is blurry and fuzzy, I am autistic.

When every sound hurts my ears and pierces my skin, I am autistic.

When I melt down, I am autistic.

When I am stimming, I am autistic.

When I am echolalic, I am autistic.

When I lose my speech, I am autistic.

 

When  I make phone calls, I am autistic.

When I am verbal, I am autistic.

When I am passing, I am autistic.

When I manage to do tasks, I am autistic.

When I self advocate, I am autistic.

When I DO ALL THE THINGS! I am autistic.

 

This is why functioning labels are useless. This is why there’s no such thing as mild or severe autism. This is why trying to fit me into your neat little boxes doesn’t work well.

I am autistic. Always.

When I appear autistic.

When I do not appear autistic.

I am autistic…no matter what.

I am autistic-2

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Your awareness wants me dead

It’s still April.

It’s still Autism Freakout Month.

I’m still being blasted by blue. I’m still being surrounded by Autism Speaks. Nothing has changed. The same words keep getting thrown back at me.

“I’m not lighting it up blue for Autism Speaks, I’m lighting it up for my son.”
“Blue has always been the colour for autism.” 

Taken directly from the Autism Speaks website: 

“The first question we wanted to ask was – why blue? What does the color blue have to do with the autism spectrum? The answer is that Autism Spectrum Disorders are almost 5 times more common among boys (1 in 54) than among girls (1 in 252). So, the color blue represents the boys diagnosed with autism.”

Blue has only been the colour for as long as A$ has been around. Before that, it was a really freaky looking of a puzzle head kid. Learn your history before you say things.

“But I want to raise awareness for *insert here*”

And my favorite…

“But isn’t all awareness good?”

No. No it isn’t.

Your awareness wants me dead.

A bit louder for those in the back, and with feeling: your awareness wants me dead. 

You see, they support eugenics.

They and their “fans” justify murder.

They think we are burdens and destroyers of hope.

They are just horrible.

Image is of a brunette female with blue eyes and red glasses. She is wearing a flower crown and a pink pokemon t shirt. I don't know why I'm wearing the crown. It seemed fun.

Image is of a brunette female with blue eyes and red glasses. She is wearing a flower crown and a pink pokemon t shirt. I don’t know why I’m wearing the crown. It seemed fun.

Do you know what the cure for autism is?

The cure is eugenics. 

What? Eugenics? Really.

I’ll say it again, this time with a different link.

The cure is eugenics.

Yes, eugenics.

And the majority  of us don’t want a cure.

Look me in the eye. Tell me that my mother should have aborted me or that I literally shouldn’t exist. Tell me that I’m a burden or that my life isn’t worth living. Oh wait, you already have.

Because by saying your child/grandson/nephew is a burden? You’re saying I am one by proxy. “Oh, you are not like my child” when we were once your child. Contrary to popular belief, autistic children become autistic adults. I know, right?

Look at me in my awesome Pokemon gear and tell me that I don’t deserve to live. That at 28, I shouldn’t still love Pokemon and Sesame Street. Dare you. Even if you don’t say it, I’m sure you’re thinking it.

When you say “but isn’t all awareness good?”, you are supporting Autism Speaks by proxy. By denouncing them and still promoting their Light It Up Blue campaign you are still spewing the hatred that Autism Speaks. Acceptance. Your awareness is useless.   Please accept us. We’re fine as we are.

When you keep repeating over and over “But ALL awareness is good!” you are silencing us when we tell you what Autism Speaks means. What they do to us. What they do to your children. When we cry out and scream for acceptance, we mean accept us as we are. Don’t force us to do things that are painful for us to fit your neurotypical molds.

Your awareness wants me dead.

When an autistic child or an autistic adult who is dependent on a caregiver is murdered, it seems it is mostly fellow autistics who weep and mourn the loss of life. I still cry over every one I read but it’s getting harder and harder to cry. One day, it’ll be so common there will be no tears left. I don’t want that to happen. But what happens when these people are murdered? “SERVICES! SERVICES! SERVICES!” “It’s SO HARD raising an AUTISTIC CHILD!” “Walk in THEIR shoes!” “YOU DO NOT UNDERSTAND.”

That is what your awareness screams to me.

When you say people aren’t aware of lower functioning autistics, well, first of all, you should know that functioning labels are a bunch of crap and it’s actually the ones that society insists on deeming low functioning that we hear about than the ones who have learned how to pass in a difficult world. When you say we don’t speak for so-callled low functioning autistics, you’re ignoring the fact that MANY of them do speak for themselves and are happy as they are.

Please stop telling me that all awareness is good.

Please stop telling me that all awareness matters.

Please just stop telling me you aren’t lighting it up blue for Autism Speaks.

Go red instead.

Support Autistic Run places.

Love us and support us as we are.

We’re worth it. I promise.

Please don’t wish me dead.

Thanks.

Neurodiversity Link Up 2017
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How Pikachu Helped Me Accept Being Autistic

This may come as a shock (see what I did there?) to anyone who knows me, but I absolutely love Pokemon. I have multiple games for multiple consoles. I go to GameStop (or I did, before their partnership with autism speaks. I’m hoping they listen to me and sever ties. Anyway) for promotions and events. I have the original and Johto pokeraps memorized. I have over a dozen pokemon t-shirts. You see, I love Pokemon and ESPECIALLY Pikachu. So yes, Pokemon is a big and important part of my life.

 

Image is of a brunette female with short hair and red glasses. She is wearing a Pikachu hat, a pink Pikachu t-shirt, and has two stuffed Pikachus in front of her.

Image is of a brunette female with short hair and red glasses. She is wearing a Pikachu hat, a pink Pikachu t-shirt, and has two stuffed Pikachus in front of her.

Pikachu also helped me accept and define being autistic. You see, in the first episode of the first season of the anime, Ash is given a Pokemon by Professor Oak. It isn’t the Pokemon he wanted and was, well, less than desirable. In many ways, this is how parents feel when they have a disabled child. That their child is broken. That their child is less than desirable. That they didn’t get what they signed up for.

But do you know what happened when Ash found the Pokemon that was given to him? He accepted him. He took him as he was. He decided that “This is the Pokemon I was given, and now we’re going to be partners and take on the world.”

Pokemon are supposed to go in their Pokeballs. It’s just how it works. Don’t ask me why, I didn’t write the storyline. But Pikachu is stubborn and Pikachu refused. So Ash finally accepted Pikachu as he was, and he let Pikachu walk by his side. They became friends. And twenty years later, they still are. Despite the fact that Ash still hasn’t caught all the pokemon and STILL isn’t a Pokemon master… but that’s another story, I guess.

A ten year old boy was able to accept his Pikachu that didn’t fit the conventional mold. A ten year old boy realized that Pikachu had very real access needs – he didn’t like being confined to a ball, he was stubborn at times, and he wasn’t always the best behaved Pokemon. But Pikachu did what Pikachu wants.

I am autistic. I also have an alphabet soup of brain cooties. I don’t perceive the world like a neurotypical person does. In a world that was created for people that are, well, quite frankly, not me, I struggle. I struggle to fit in and I struggle to find my groove. I live in a world where I function differently just because of how my brain is wired. It doesn’t mean there is anything wrong with me. Some of my brain cooties are because sucky things that shouldn’t have happened happened, and my brain did what it could to protect itself at the time. Some are because of genetics. And some are just because my brain does what it wants, and not what I necessarily want it to do.

But like Pikachu, I wasn’t anyone’s first choice. Like Pikachu, I was unconventional.  I had my own way of doing things and no matter how hard you tried to force me, I couldn’t do it any other way. But Pikachu taught me that that’s okay. That I can still make a large group of friends. That I can still find someone who will stand at my side. That I can still have people who will be my companions.

And that is why Pokemon isn’t merely a kid’s show. Pikachu helped me accept myself.

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I’m shady…or something

Image is of a pale brunette female. She is wearing a grey hat and zebra print sunglasses. She also has on an orange, pink, white, and grey cardigan, an orange t-shirt, and a blue, green, pink, and orange necklace with various sized square and circle beads.

 

 

 

 

So, one of the more sucky things about being Autistic is dealing with sensory overload. Sensory overload is when there’s just too much going on in the world and my brain and body cannot process it. So this results – I wear sunglasses indoors. I look silly and if I’m doing something like getting food, I have to ask a friend to help describe the food so I don’t get something gluten-y by mistake. Because that would suck donkey balls.

Light hurts. Like, they’re not just bright and trigger my migraines sometimes (I am hella photosensitive and suffer from severe photosensitive migraines. I really need to get a pair of blue tinted glasses, but moving on). They physically hurt every inch of my body in a way I can’t explain. They send my brain into overdrive. I literally cannot function with lights on many days.

But I’ve accepted it. It’s who I am. Who cares if I look silly wearing my sunglasses indoors? I’m happy and comfortable. Isn’t that what matters instead of conforming to norms?

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Labels Again

 

image is a package of gluten free ramen noodles

Today’s

photo post is labels. Labels are so controversial it isn’t even funny. You see, in some ways labels are super helpful. The labels on this here soup tell me it’s Nora compatible and safe for me to eat. It lets me know how long I need to attempt to cook it (without starting a fire in the microwave, but that’s beside the point) and you know what? Those are helpful things!

In the world, labels help me know what is safe for me. Online, if I see groups using puzzle pieces or functioning labels, I know that it isn’t a beneficial place for me. But wait, you just said you liked labels! I did – when I get to choose them. Functioning labels are inflicted on me by someone else. The labels that I choose to use and embrace help me define me. The labels the world chooses to put on me help them define me.

When functioning labels are used, they’re to deny me services. You see, most days I can speak. Because I can speak for myself… I am denied services. Even though one phone call can send me into a meltdown for days or lose my words for a really long time. Even though I can advocate for myself and I do (and I happen to think I do a good job of it, kthanxbai), it doesn’t mean I don’t need help sometimes. I can’t do it all my own. For people who are so called low functioning, it’s used to deny them rights and agency.

Labels are not only for soup cans anymore.  But they’ve got to be used with caution.

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The Hufflepuff Autistic

Image is of a badger (the Hufflepuff logo) on a yellow background. Text reads "Our emblem is the badger. Often underestimated, but vicious when provoked."

Image is of a badger (the Hufflepuff logo) on a yellow background. Text reads “Our emblem is the badger. Often underestimated, but vicious when provoked.”

It is not a secret that I am a Hufflepuff. If we want to be precise, I’m a Huffledor.

What does this have to be with autistic, you ask? What does this have to do with accepting being autistic?

Well, in many ways Hufflepuff is the “cast away” house. People are embarrassed to say they are a Hufflepuff and it seems to hold a certain stigma, the same way that there is a stigma when people find out you’re Autistic. “Oh. But you’re Autistic?” “Oh. But you’re a hufflepuff?”

Neither of these things are bad things. There is nothing wrong with being Hufflepuff. There is nothing wrong with being autistic. But you know what?

But both of these things are me.