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.


Neurodiversity Link Up 2017

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.

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?

Labels Again


image is a package of gluten free ramen noodles


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.

To the person who once lit it up blue 

(Image is a shattered blue light bulb with the text “don’t light it up blue. Listen to autistics.”)

To the person who once lit it up blue,

April 2nd was autism awareness day, or something like that. At one point in time, your attitude toward it wasn’t what it is today. 

At one point in time, you believed Autism Speaks was doing good. You may have *gulp* donated to them or you may have shared their propaganda. You may have not realized that their idea of a cure of eugenics and ensuring that we don’t exist. 

You didn’t know better. You didn’t realize that they don’t help us. You didn’t realize they gaslight us. They abuse is. They don’t listen to autistic adults. You didn’t know. 

You may be autistic yourself. You may be a parent of an an autistic child. Or you may be neurotypical. You may have thought tou were helping a good cause. 

You weren’t. 

You didn’t realize you were justifying our abuse. Our murder. Our mistreatment. You didn’t realize that instead of helping us, you were contributing to the problem. 

But guess what?

You learned. You know better. Screwing up isn’t the problem. It’s what you do as a result. You now know that Autism Speaks exists to actively harm autistics. You now know that LIUB is nothing more than an ad campaign for Autism Speaks – did you know that blue has not always been the colour for autism and it’s been the colour for merely barely a decade? Did you know that it was chosen to erase females? Well, now you do. 

You learned, my friend. You grew. You changed. You thought you were doing something good but you learned you were hurting us. And once you learned, you changed. 

That’s what mattered. You changed. You’re now moving toward acceptance. Toward redinstead. You know better now! 

And what matters now is you educate others. You educate yourself. You educate your children. You move forward toward a better future, instead of dwelling on the past mistakes. 

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.

Walking in our shoes

Image: two pairs of feet and two pairs of shoes. Both are rainbowy and fun.

Image: two pairs of feet and two pairs of shoes. Both are rainbowy and fun.

For many years, this has been one of my favorite pictures. It’s my feet and my best friends feet. It’s been both our profile photos and at least my cover photo before and will be incorporated into my memoir. It’s simple and there’s nothing fancy about it. The framing isn’t great and the colours aren’t ideal. But I love it.

I love it because it tells a story.

It tells a story of two best friends – both who have walked many places. Some easy, some difficult, but we’ve both walked a road.

It tells the story of two teenagers who met online over half their lifetime ago and their friendship blossomed into a real life friendship. Our lives are different in many ways, but the same in many ways.

We walk in our shoes. And sometimes, we walk in each other shoes, or at least we did when we lived together.

Our shoes have seen a lot. Our shoes tell a story.

One of Autistic acceptance.

One of mental health.

One of being neurodiverse.

These are our shoes.

And this is our story.

Today, we are encouraged to light it up blue. Today, we are told that being autistic is a burden. Today, we are surrounded by puzzle pieces and told we are merely missing pieces. That we are a puzzle to be solved. Today, we are told our hard our lives are.

We are told that people higher functioning are the “lucky ones” and people lower functioning are denied agency. Even though I may be both be so-called high and low functioning  on the same day – I can make a phone call to my doctor, but I can’t use the stove without serious risk of injury. I can take care of my cat just fine, but taking care of myself is another story.

It’s time to shut up about walking in the caregivers shoes.

It’s time to care about our shoes, for a change.

I’m fed up with your awareness

I have completely and utterly had it with your awareness. I am absolutely fed up with your so-called awareness and I would love to shove it into a meat grinder. Your awareness has done nothing good for me and it’s time to STOP. I am done with your awareness. I don’t need it anymore, and to be frank, I never needed your awareness.

I am fed up with your puzzle pieces, which have a history before Autism Speaks took them over. Learn our history (I am imperfect myself and am still learning our history. I’m always learning. It’s part of being. Learning is good. Please learn. We cannot change and grow if we don’t grow).

I am sick and tired of your awareness! What good has your awareness done? Nothing. It’s justified the abuse  of Autistic children. It’s used for your bull-hockey functioning labels  It’s used to further silence us. To tell us that we aren’t enough. That we need to try harder. That oh, if we Do The Thing, we can Do The Other Thing that we actually want to do.

I am absolutely fed up with your awareness. I am sick of you lighting it up blue. You aren’t doing a single good thing for me by doing so. In fact, you’re justifying my abuse and my murder. You’re justifying the mistreatment of my Autistic family.

Do I seem angry? Do I seem bitter? That’s kind of my point right now. That’s kind of my purpose. I am angry. I am bitter. I am sick and tired of whenever I criticize Autism Speaks, whenever my friends and fellow advocates & activists speak out of the dangers of them of hearing the same rhetoric over and over. “But isn’t all awareness good?” “But we’re raising awareness!” “We’re all working for the same cause!” “I want to do whatever will help my child.”

Your awareness has achieved nothing. Your awareness is hurting me, not helping me. And do you want to know why I don’t want your awareness? I will spend the entire month of April completely depleted of spoons. I will spend the entire month of April seeing people “lighting it up” for “autism awareness.” I will spend my entire month hearing how AWFUL autism is. What a TRAGEDY my life is. How HAAAAAAARD it is to raise an autistic child. Parents will bully and abuse me. Aspie supremacists  will tell me what an awful person I am as an activist and an advocate.  I will continue to see parents moan and whine about the fact their child will never use their voice box to speak – all while ignoring the fact their child’s voice is speaking to them loud and clear. Day in and day out, with no escape. My feed will be flooded.

Your awareness has only hurt me. How are you helping me? If you want to help advocate for me as a neurotypical, great. But shut up and listen to me when I tell you you’re doing it wrong and quit silencing me. Stop being aware of me and accept me. Stop trying to change me. Stop trying to make me into something I’m not.

And for the love of cheeseburgers, don’t light it up blue or I will crutch whack you.

Image: a beach-y background with the white text that reads "Stop being aware of me and start accepting me."

Image: a beach-y background with the white text that reads “Stop being aware of me and start accepting me.”

Ah, labels, again

Image is of a background with clouds. Text reads "I am not functioning. I am living."

Image is of a background with clouds. Text reads “I am not functioning. I am living.”


Today and yesterday I was “high functioning.”

I made phone calls. Scary phone calls – to the bank, to my student loan company. I went to Walmart. I’m high functioning, you see. I went to the Sprint store because my cell phone wouldn’t activate and you know, it’s kind of hard to make phone calls without a functional phone. You would have no idea how hard I was working at being high functioning and passing in a world that’s equipped to speak out against me.

I see so many things on the internet about being high functioning. Functioning labels are bullshit and I think they need to be eradicated. They don’t help me define myself, but rather help others define me. They don’t help me get services or agency, rather they deny me service and agency.

You know how I mentioned I was “high functioning”?

Later that same day, my PCA had to make me food for the weekend to freeze so I can actually eat. Because I cannot use a stove by myself. That’s right, the same “high functioning” person cannot use a stove without serious risk of injury to myself or my apartment. I’ve melted a blender and set fires. I wore children’s shoes with velcro because I couldn’t tie my shoes that day. I played with the rubber coil bracelet I always wear on my right risk.

And today, after more phone calls, I am now non verbal. Talking isn’t possible. I can type and communicate, but my “signs” are more severe. The truth is autism is exhausting.

The world calls me high functioning. Parents say “you are not like my child” even though I was once your child and your child will someday be me. I have very real struggles and very real issues. I don’t hate being autistic. I don’t think autism is evil. But it doesn’t change the fact they are very real, and very annoying struggles. It doesn’t change the fact that I need supervision – I will literally walk into things or people unless I have someone telling me “hey, watch out!”. I can’t use a stove. I can’t do many executive function tasks.

I would love to be able to eat whatever food I want. But I can’t. I would love to be able to talk whenever I wanted about what I wanted but the words literally become stuck inside me and there’s no way to pick them out. We are like your child. We have experienced things your child has. But when we try to speak out, when we try to say anything, you shut us down. And you are helping your children internalize the message that their autism is something to be ashamed of. That they are lower functioning and that their lives aren’t worth living. That they are burdens.

What I need isn’t your labels. Your labels help you define me, not help me define myself. What I need isn’t for you to tell me what my functioning is. What I need for you  is to listen when I talk to you. What I need for you is to accept me. I don’t need your awareness and I don’t need your labels. All your labels do is dehumanize me. All your labels do is tell me how you expect me to live up and the standards you keep me to. Despite the fact that countless other autistic advocates, dozens upon dozens of activists, and myself are telling you how harmful these labels are, you insist on using them.

Please stop.

Today and yesterday I was high functioning.

Right now, I am low functioning.

But the truth is, I am neither and that’s acceptable. I am living.

Labels, Labels, Labels

Ahhh, labels. It’s a messy  subject. Recently, I wrote a blog post about liking my labels. I have also written one about how functioning labels are bullshit. This has confused people, because some people see it as embracing my labels one week and rejecting them another.

Labels are useful when they define me. Labels are not useful when they help others define me. For example, I choose autistic and Hufflepuff. They’re very much who I am. They’re a part of my core, a part of my operating system that cannot be changed. I embrace them because they help me declare who I am.

Functioning labels help others define me. High functioning, low functioning, severe autism, mild autism – they’re all just words other use. Sometimes to deny me services – since I can “coast along” and get by, I am denied supports and help I need. They are used to commit insurance fraud and get children ABA, which is abusive. ABA is not acceptable, and it is why many people use functioning labels.


By calling my autism mild, by saying I am high functioning, you are not only insulting other people on the spectrum, you are insulting me. You are feeding me into ableist constructs.  You are attempting to silence me, by saying my voice and my story does not matter. Even though many days, I am not capable to use the stove alone. Sometimes, I’m not capable of leaving the apartment alone. Some days, I cannot talk. Some days, I can. Some days I just sit and stim quietly all day. Other days, my mouth runs a million miles a minute.  I am not just on one static place by being autistic. I am many places. Screenshot 2016-02-19 19.28.30