walk for autism speaks

The problem is less that autistic people aren’t speaking, and much more that non-autistic people won’t stop.

Today is Autistics Speaking Day. I have something to say to non-autistic people. Can you listen?


Marvin and I went out to eat after protesting the 2014 Autism Speaks walk with ASAN Vancouver. From the moment we entered the restaurant, a patron sitting and eating with her family was openly staring at me and my wheelchair.

It seemed like this person really had a problem with me when I got out of my wheelchair to fold it up and sit at the only place we could-  the table right next to her and her family. The staring got really obvious then. When Marvin brought over our food and McStaringson saw that we were going to stay and eat there, she got very uncomfortable.

I was tired, 110% finished with non-autistics, hungry, and overloaded in all of my senses. In that moment I cared a sub-zero amount about looking non-autistic, or less obviously disabled. I just did my thing and ignored McStaringson. I made no eye contact with anyone. I didn’t force any facial expressions. I was rocking in my seat, and I very likely flapped my hands when I saw our food coming.

When she couldn’t take it anymore (and she didn’t last long) McStaringson leaned over and pointed me out to her family. From the table immediately next to us. She was upset. I could hear her very clearly, but I’m sure she wanted me to. She actually managed to convince her teenage kids and spouse to get up and leave their food, which none of them had finished, so that she could get away from me as fast as possible.

I never went back to that restaurant. It took a little time and a lot of gritting my teeth to be able to eat in public again.


I have tried to talk about this three times in the presence of non-autistic people. All three times I was met with disbelief, justification, or correction- as if I were wrong about the thing that happened to me. Perhaps you’re feeling bristly and defensive yourself. Perhaps you’re already composing a #NotAllAllistics response like the ones I have heard in real space.

“It couldn’t have been that bad.”

“I’m sure you misunderstood.”

“Maybe she was leaving for some other reason.”

“Well, don’t autistic people struggle with understanding facial expressions…?”

They spoke for me, over me. They were so unwilling to hear what I was saying or believe that ableism is a widespread problem to which everyone is owed some responsibility, that they denied reality and my experiences.

And yet, this is the same kind of person who expresses dismayed surprise when they are finally confronted with an act of violent ableism or obvious oppression that they can’t deny. The denial of our daily lived experiences is the foundation for more obvious forms of oppression, but they can’t see the link. That link needs to be pointed out and the silencing needs to stop.

It’s not so much that autistic people aren’t speaking. We are speaking. It’s that so few are listening, and the rest of you won’t stop speaking over us. Our voices get drowned out. Often this is intentional. Sometimes it is the result of a true ignorance about autistic people and our lives, or the wrong belief that autistic people need someone to speak for them. But allies can help fight this ignorance and slay that insidious lie.

When an autistic person shares their lived experiences, believe and support them. When we have something to say, listen. Value our knowledge. Share our words so they fly farther. Amplify our voices, no matter how we communicate. I would say that the Autistics Speaking Day hashtags are an excellent place to start.

#AutisticsSpeakingDay #ASDay

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I am Cyndi.

I am a 35 year old autistic adult.

I will not shrink or change who I am to make others happy. 

There is no “normal” woman hiding behind my autism. I am me, autism and all. Being autistic has shaped every atom of my being. Everything from how I move to how I experience my emotions. You can’t take autism away without killing me. 

I stim shamelessly in public. I have a lot of sensory issues and difficulty with transitioning between activities. My overstimulation threshold is extremely low, so I’m almost always stimming in some form or another.

Sometimes I have meltdowns– some of them involve screaming, some are crying and some are self-injurious. Yeah, I punch myself in the head or bash my forehead against things.

I can talk reasonably well, but the words I say are often simpler than my thoughts. Speaking requires me to engage a lot of brainpower, though you can’t see the effort because it’s only palpable to me. Typing uses a lot less brainpower. I’m better at expressing myself in writing.

I am who I am and it’s not my problem if you don’t like it.

Autism Speaks wants to erase me and others like me from existence. Autistic people who can’t speak or make their communications understood by wide audiences are especially vulnerable to the hate and negativity this organization spews about us.

You are a hypocrite if you say “be yourself!” while supporting an organization that says “but not like that. We have to fix you first.”

Autism Speaks devalues autistic peoples’ lives. Why support that? So don’t.

Don’t wear blue on April 2nd. Don’t light it up blue. Don’t go to Autism Speaks walks unless you’re there to protest against the organization.

Don’t support Autism Speaks.

#boycottautismspeaks #actuallyautistic #walkinred

Preventing an autistic person from stimming is probably on par with taking a quadraplegic person’s wheelchair joystick away, taking a deaf person’s sign language away or taking a blind person’s Braille away.

Autistic people NEED to stim to function, dammit! You wouldn’t punish or shame physically disabled people who use mobility aids, tactile reading or sign language to function, so why does anyone think it’s okay to punish and shame autistic people for doing something that helps them function?

Parents, if you suppress your child’s stimming, you are being ableist and you are abusing them. It’s okay to teach them alternative stims or give them a quiet stim toy if you need them to be quiet, but you should NEVER, I mean NEVER, teach your child that stimming is bad and needs to stop.

If you are autistic and were shamed or abused for stimming– it’s NOT your fault. It was wrong of anyone to stop your stims and I hope you learn it’s okay to stim again. YOU are not broken!

Please reblog this around. Spread autism acceptance. I am autistic. My voice matters because I decided it does. ALL autistic voices matter.

Britt here, reminding you to listen to autistic people and that Autism Speaks ignores actually autistic people. They continue to spread lies/fear/hate about us and they are an ablest organization. So this April, don’t light it up blue, instead walk in red!

I’m autistic and I do not need to be “fixed”.

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ASAN Vancouver’s protest at the 2016 Autism Speaks walk in Burnaby, BC.* Part two! Photos by Marvin Schaber :)

[Photoset description: A series of six photographs taken of the attendees, the colourful signage, the flyers we distributed, and the location of ASAN Vancouver’s protest against Autism Speaks. We set up alongside a paved path that the Autism Speaks event used as the walk route.

Some of the signs say, “Listen to Autistic adults”, “Got questions? Autistic adults are the best resource for parents of autistic kids”, “Autistic rights are human rights”, “Protest against Autism Speaks”.

Two visible flyer titles say “What’s the Problem With Whole Body Listening?” and “Neurodiversity”. End of image description.]

*Correction: No brain, it was not. It was in Richmond this year.

in honor of autism awareness, i am going to make a post on how all of us could help out these poor people with autism : (

  • give me all of your money
  • worship me
  • listen to me
  • accept me as your superior 
  • my autistic self will always be fantastic and i dont need the pity from allistics 
  • stop supporting shitty organizations that love to crap upon us (autism speaks)
  • dont ask me about information on autism speaks. i am not your walking talking Google
  • im perfect in every way
  • i am powerful
  • basically, me > allistics 

I guarantee you that this is best contribution you can give to autistic people 

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ASAN Vancouver’s protest at the 2016 Autism Speaks walk in Burnaby, BC.* Part one! Photos by Marvin Schaber :)

[Photoset description: A series of six photographs taken of the attendees, the colourful signage, the flyers we distributed, and the location of ASAN Vancouver’s protest against Autism Speaks. We set up alongside a paved path that the Autism Speaks event used as the walk route.

There is a table set up with signage that says “Free Earplugs” and “People Not Puzzles” that is holding flyers and earplugs. Signage with the ASAN Vancouver name, logo, and a QR code stands next to the group.

Some of the signs say, “Listen to Autistic adults”, “Support Not Cure”, “Autistic rights are human rights”, and “Protest against Autism Speaks”.

Two visible flyer titles say “What’s the Problem With Whole Body Listening?” and “Neurodiversity”. End of image description.]

*Correction: No brain, it was not. It was in Richmond this year.

Reblog if you’re autistic too! :)

And now all the Light it up Blue people will go back to their lives after patting themselves on the back for their “awareness” stuff. Autism Speaks will wipe its ass with the money it made with its lies and stigma.

To those lighting it up blue, it’s just a month to flash a puzzle piece, speak over us and say they’re being supportive. 

To those walking in red, it’s a lifetime of fighting to be heard. Red is a great “fight” color. Red is like fire. Red is like anger. Red is like passion.

We are still here. We will always be here. We are fire, anger and passion. We are human beings and our importance shouldn’t be defined by a single month of the year.

WE ARE AUTISTIC AND WE ARE AWESOME.

Watch on butterflyinthewell.tumblr.com

Link in case Tumblr eats the video: https://www.youtube.com/watch?v=xVcAuIs0yPs 

A copy of the speech I wrote and read is below. Hey autismspeaksofficial, you said “autism speaks, it’s time to listen.” I am autistic and I am speaking. LISTEN.


Autism Speaks is the most offensive organization out there to autistic people. If you participate in their “Light it up Blue” puzzle piece garbage, you are not supporting autistic people, and I’ll tell you why.

Autism Speaks uses fear, stigma and ableism to make autism look like a fate worse than death.

Autism Speaks dehumanizes autistic people. How would you feel about someone saying they would rather have a dead child than someone like you?

Autism Speaks says I am a burden.

Autism Speaks says I am an epidemic.

Autism Speaks calls me broken and in need of curing.

Autism Speaks wants to prevent people like me from being born.

Autism Speaks promotes therapies that are damaging and traumatic for the sake of making people like me look normal.

Autism Speaks sympathizes with the parents who murder their autistic children.

Autism Speaks doesn’t have a single autistic person on their staff.

Only four percent of the money Autism Speaks makes goes to help families. The rest is spent on eugenics and research.

Do I look like a disease to you? Do I look like I need to be fixed or cured?

I wish I was joking, but Google the terms “Autism Speaks controversy” and you’ll see the truth.

Autism Speaks not speak for autistic people. Autism Speaks is a bully, and I don’t like bullies!

You’re much better off supporting the Autistic Self-Advocacy Network, or ASAN. They have autistic people on staff and they know what they’re talking about. Nothing about us without us.

If you want to use a color to support autistic people, use red. The Walk In Red movement is a counterpoint to the offensive Light it up Blue. Autistic people support this by wearing red to promote autism acceptance, which is much better than simple awareness. Wearing red in April shows you see autistic people as humans who are wired differently rather than diseases who need a cure.

Cancer is something that needs curing. Autism is not.

I’m not broken or made wrong. I am not a disease or an epidemic. I don’t accept the notion that I have to remove a vital part of my identity to fit in.

Temple Grandin, one of the most famous autistic people out there, has a quote: “I am different, not less.”

I want to take the quote a step further. I am not a puzzle piece. I am Cyndi. I am different, not less.

Autistic brains need to work things out sometimes, so let them!

Sometimes I’ll mentally imagine a scene I want to write for a fanfic while I’m stimming. I know I’ll lose it if I stop the stim the same way you lose a dream if you wake up, so I keep the stim going for a long time to mentally play out the scene several ways like a movie. If I’m stimming on music you can guess what happens. I delete everything else off the playlist except for that song LOL! I visualize over and over until I can turn what I see into words. It’s like the thought is connected to the movement. Remember those old cameras that required a crank to capture silent movies on film? The movie stops being captured if you stop cranking. Same thing with my brain– I have to keep “cranking” via stimming to capture the images I’m trying to imagine.

But sometimes I might do it while motionless and staring off into space, though I’ve trained myself to look at something with a lot of text so people think I’m reading. Thing is, sometimes I relax and my mouth hangs open like I’m catching flies with it. Oops. :P

Aaand sometimes I might freeze in position if a thought hits me while I’m in motion and I have to play it out before I dare to move again because moving wakes me up from my ‘dream’. Fortunately, this happens most often when I’m in my room, so I can assume whatever weird pose I want and not care how it looks. 

All of the above only happen when I’m actively working on a fanfic. If you ever bump into me in person and you see me doing those, I AM WRITING. Writing in my head is still writing!

I guess I DO fit the stereotypes laid out by so-called “experts” and the problem is many experts don’t realize such behaviors serve a vital purpose. I wonder how many nonverbal kids and adults get redirected every time they try to figure something out because some allistic thinks they’re engaging in “pointless, behavior” ie not looking normal enough.

If you’re a parent and your autistic child has a meltdown every time you redirect them when they stop to stim and stare into space, consider the fact that you might be interrupting a train of thought. Caretakers, if you’re in charge of an adult who does the same, also consider the above. Give them sometime to puzzle things over.

Pretend you misplaced your keys by accident. After hours of searching, you find them. You know where they are and you want to use them to drive to the store. How frustrated would you feel if someone made you go wash dishes or do math problems every time you spotted your keys and went to grab them?

That’s basically what you’re doing when you interrupt an autistic person who is working something out in their head. It’s frustrating as hell!

Granted, in my case it’s not a super vital thing and I can probably pick up the train of thought again later, but that may not be the case for someone whose autism affects them differently.

So please consider that, okay?

(Anyone can reblog if you want. I’d like to spread some autism understanding and acceptance. :) )

Autism: Why ABA and stim suppression are bad

*** This video may be triggering for autistic people who have PTSD due to ABA therapy. * * *

https://www.youtube.com/watch?v=nEoW5rfNXM4 I’m really sorry that I don’t have captions on this. I have basically zero ability to type to dictation no matter how slow a person goes. I always put in what I wrote if I read something for a video, but most times I do it without written aid. A summary if the video’s contents is below.

I talk about why ABA is abuse and I simulate the experience of a child who gets told “quiet hands” by suppressing my own stims during a time where I really need to be stimming to self-regulate. I tell exactly what I’m feeling as I suppress and you can visibly see the reaction escalate as I work harder and harder to not stim. The reactions in this video are 100% real. Now imagine a child going through it. IT IS TORTURE AND IT IS ABUSE TO PUT A CHILD THROUGH THAT.

Btw I do not have any eating disorders or cancer, I am just very skinny. I’ve always been underweight and it’s just a manifestation of my PDD-NOS. (Pervasive Developmental Disorder - Not Otherwise Specified).

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Image description: A series of photographs taken at ASAN Vancouver’s protest at the Autism Speaks walk in Burnaby, BC.

Here are some pictures Marvin took of the protest today. Alanna even got the Global TV News person to come out and film us! Stay tuned for a video from me with some footage from the event and a mini vlog :D

Preparation For Protest Against Autism Speaks

Date and time: October 16th 1:30-4:00 PM

Location: 1675 Commercial Drive

This is the second meeting to prepare for the Autism Speaks Walk Protest, which takes place on Sunday, October 23rd.

We will continue to make posters and flyers! Anyone who can bring supplies, please let us know.

We will also be going over the basics of what to do during the protest, which scripts to say, how to approach people, etc.

It is highly recommended that anyone planning to join the protest come to this meeting. If you cannot make it, please contact us.

The room is inside the Il Mercato Mall.
There is paid parking in the basement ($2.00 for 2 hours) and wheelchair access from the Commercial Drive entrance.

The nearest skytrain station is Commerical Broadway. The building can be reached via the 20 bus route.