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  • Home
  • Introduction to Autism
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      • Negative Narrative >
        • Autism Controversies
  • How to Interact
    • Stigma & Discrimination
    • What to Avoid
  • Advice for Parents
    • Visual Supports
    • Autism Treatments
    • Explaining Autism to Kids
    • A Mother's Story
    • My Sibling Perspective
    • Autism Explained for Kids Site
  • All Kinds of Minds
    • Culture of Autism
    • Late Diagnosis
  • More
    • How to Assess Claims
    • What Causes Autism?
    • Additional Resources
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      • About the Website
      • ASE FAQ
      • Survey
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      • Make a Submission
  • Our Blog
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    • Smoothing Transitions
    • Autism Speaks
    • Vaccines
    • Infantilization
    • Her Autism is Worsening
    • Stimming
  • Autism Tutoring

On Autism Awareness: Why Caley and I Will Not Light It Up Blue

4/2/2015

1 Comment

 
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If I wear blue today, it will be because I stumbled blindly out of bed and grabbed the first thing I saw which happened to be blue. Otherwise, this Autism Acceptance Day (yes, it's not just autism awareness day!), I'll be wearing red. And maybe some taupe. Here's why:

1. Autism awareness can be a great way to feel like we're helping...
...but in reality, people tend walk away from awareness events with little if any more understanding for autistic people than when they came. Instead, as Jess at Diary of a Mom coined the phrase, the most they tend to walk away with is cocktail party awareness (if that). 1 in 68, more boys than girls, more common than childhood cancer/diabetes/AIDS combined (which, by the way, is a very hurtful comparison) - that's what you tend to leave knowing. Awareness makes us feel like we're doing something - it feels GREAT when we light an entire building up blue or share that Autism Awareness status! But most awareness related things are actually not conducive to understanding. Awareness was great back when no one had heard of autism before, and it still comes with the best of intentions, but now that most people have heard of autism (at least here in the US), we need to move on to tackling harder goals - like autism understanding and acceptance of autistic people for who they are.

2. Autism awareness can actually be pretty hurtful to autistic people...
...because how often do you ever spread awareness of something good, or just different? Ever seen a gifted awareness campaign? No? Neither have I. If you just spread awareness, the impression people can leave with is that autism is bad and autistic people need to be saved. (Don't believe me? Think about how similar to the breast cancer awareness campaigns autism awareness campaigns are.) Moreover, it risks spreading the false impression that autistic people are lesser, because again, if you’re spreading awareness it lends the impression it’s because they have this “bad” thing. A lot of people on the spectrum, Caley included, hate April for this very reason. Which is why they’ve launched counter-movements: Tone it Down Taupe and Walk In Red.

3. Light it up blue is especially not useful and hurtful…
…because there are two likely outcomes when someone walks past a blue building. 1) They think, huh, the building is blue. Or 2) They think, huh, the building is blue, I wonder why that is? Oh, yeah, I remember, it’s because of autism awareness. I’ve heard of autism before. Those are those kids who have some kind of problem, right? ...and then they (likely) walk away with the exact same level of lack of understanding as they had previously. There are many activities that would be better suited to help people understand autism than lighting it up blue.

And why is it hurtful? Well, not only for the same reason that autism awareness campaigns can be unintentionally hurtful, but also because according to Autism Speaks the color blue was chosen EXPLICITLY TO REPRESENT BOYS ON THE SPECTRUM. So if you’re a girl on the spectrum the message that sends is that you're not actually important to the people lighting it up blue. And that’s just messed up.

4. These are generally activities associated with Autism Speaks…
…which Caley and I and a LOT of other autistic people do not support, due to some very hurtful actions on their part, among other things. Read more here:

 http://www.autismspectrumexplained.com/…/i-too-my-autism-sp…


That’s just the very tip of all the things I want to talk about related to autism awareness, there is much more to it. If you want to read more, check out The Negative Narrative, a page on our website about how unintentionally hurtful many of the things done to help autistic people are, the narrative about autism in our society, and how to avoid accidentally contributing to these hurtful attitudes: http://www.autismspectrumexplained.com/negative-narrative.h…

And if you’re looking for alternatives to all the blue going on, check out Walk in Red, a protest against some of the harmful attitudes that can accidentally be spread this month, and Tone it Down Taupe, another protest. I think a post they shared says everything about how this month can feel for people on the spectrum. “April 1st is International Allism [Meaning Not-Autistic] Awareness Day. Today, please remember to Tone it Down Taupe for all those persons currently suffering from a condition known as allism. It is a tsunami. An epidemic. Experts currently believe that 49/50 people are allistic, although those numbers may be thankfully diminishing. As you wear your Taupe, remember to be extra kind to an allistic today. Don't forget to let them know how truly inspirational they are for surviving such trials as excessive social contact. Tone it Down Taupe for Allism Awareness!” It's an exercise in empathy to read that.

This April (and every month), please join Caley and me in supporting autism understanding, acceptance and respect, not just awareness. If you have any questions, feel free to ask. Remember, Caley does read these comments and can find things hurtful, so please use your judgment before commenting.

-Creigh

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Light It Up Blue Part II

4/6/2014

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Originally published 4/5/14

As if to prove my point about the importance of including additional material for education, yesterday I passed two signs that said "Light it up blue" with a tiny logo for Autism Speaks that you couldn't even see safely because the sign was so far away.

That's it. Light it up blue. It didn't say why, it didn't teach the reader anything about autism, all it did was say those four words. The signs also were mass-produced rather than being hand made, so my guess is they're all over the country.

Judging from where the signs were located, a lot of time and energy went into affixing them there. So obviously those who put them up cared a lot about autistic people to go through all that effort and thought they were helping them by doing so.

This is exactly what I mean when I say that when we're doing something to promote autism awareness/understanding/acceptance we should ask ourselves, how is what I'm doing impacting the autistic community? Because I'd say those signs would never have passed that test.

-Creigh
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On Light It Up Blue for Autism

4/2/2014

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Today is Autism Awareness Day (and Autism Acceptance Day). I'll be putting out a post about that shortly, but for now I wanted to write a post on the idea of "lighting it up blue for autism". Light it up blue deeply frustrates me. I remember when I was in college there was an Autism Speaks U club on campus. They told me they had succeeded in convincing the university to light it up blue for autism. My initial reaction was, great! 

Then I asked, are you going to have flyers to educate people about autism?
No.
Are you going to have people standing next to these blue lights tellling people why they're blue?
No.
So how is this at all helpful for autistic people?
...no response.

Even if on the off chance a bystander realized that it was blue because of autism awareness (and the mere recognition of that fact indicates that they're already aware of autism)....what does that blue light teach them about autism? Absolutely nothing. And that is just one of the many reasons why I'm not a supporter of light it up blue, the others being that even if facts about autism are given, they tend to be factoids like "1 in 68" that lead to "cocktail party awareness" as Diary of a Mom put it, and additionally I'm concerned the campaign feeds fear, not understanding.

So if you choose to light it up blue today, I'm going to ask you to PLEASE provide information along with that color. And make it meaningful information - if you're at a loss for what to say, feel free to go to the Characteristics page or the Myths page of the ASE website for some suggestions that would truly make the world a better place for autistic people if everyone understood. Out of the two, I'd say mythbusting is far more important since there are so many toxic ideas about autistic people out there. 

No matter what we choose to do, we should always ask ourselves, is this going to make the world a better place for autistic people? Because that's the ultimate goal, but that's not always what we're accomplishing.

-Creigh

Characteristics page:
http://www.autismspectrumexplained.com/characteristics.html
Myths page:
http://www.autismspectrumexplained.com/common-myths.html
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Understanding: The Bridge Between Awareness & Acceptance

4/2/2014

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I have been wanting to write this post for the longest time and today, World Autism Awareness Day along with World Autism Acceptance Day, seems like the most appropriate time to do so.

First, some background. There are two loose, informal sub-communities within the autism community. I already talked about them more within the website, but they include a "pro-cure" camp and a "pro-acceptance" camp. These camps divide the community and, almost like political parties, one's feelings towards either camp generally line up with positions on a variety of autism-related issues, from treatments, to research, to organization.

The reason I gave you this background is that this schism applies to Autism Awareness Day vs Autism Acceptance Day, too. The pro-cure supporters mostly line up with Autism Awareness Day proponents. And Autism Acceptance Day was created as a pro-acceptance alternative and generally intended to be a direct counterpoint to Autism Awareness Day.

To choose to support one cause, awareness or acceptance, is generally to choose to deny another. And so here I stand, stuck in the middle because I support both causes. I support autism awareness, not the cocktail party "1 in 68" kind, but true awareness of the existence of autistic individuals towards the goal of helping children get diagnosed. Granted, I believe the importance of this goal is waning in the United States, as we've done a superb job of making people aware of autism's existence here, but as someone who has traveled abroad, I strongly feel that autism awareness is a critical cause in other countries I've visited, like China.

Yet I support autism acceptance as well. Because I look at what my sister needs and wants and what the children I've cared for over the years would benefit from, and hands down the answer is acceptance. Acceptance, as they say in the community, is an action. It's seeing the autistic individual in front of you and still giving them all the accommodations and therapy that will help them - but at the same time, it's valuing them for who they are. And that is one of the most important gifts you can give any autistic person.

But more than either one of those, I support a third cause, that of autism understanding. Because understanding is the bridge to acceptance. After all, if you're merely aware of autism but think it's a symptom of a disease separate from your child, or that your child is "trapped in their autistic world" a terrible world from which they can emerge if only you find the right treatment, when told that you should accept your child as autistic you're more likely to scoff or even react with horror at the notion than to do so.

I guess what I'm saying is, there are three causes in the autism community: Awareness, Acceptance, and Understanding. Here in the United States, we've done a great job with awareness and we're moving on to acceptance, but before we can get there we need the bridge of understanding to guide us. Thankfully, I think that's a cause that anyone in the autism community would be proud to stand behind.

So this month, I'm going to devote myself to the cause of Autism Understanding, along with Autism Awareness and Autism Acceptance. Each day I'm going to share a new photo that promotes understanding of autistic individuals and seeks to combat stigma and false ideas about autism. Feel free to share mine or make your own.


Together, we can make the world a better place for autistic people.


-Creigh
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    About Creigh

    I'm a college student who grew up with my Autistic younger sister, Caley. I've got a bachelor's degree in Psychology and I'm currently studying for my Master's in Speech Language Pathology.

    Neither of those, however, have given me an understanding of autism. All of my understanding comes from learning from the many autistic people that I know. As a result, I have a very different outlook on autism than most, and a burning desire to tell the world what I've learned. This blog is one of the many areas in which I attempt to do that.


    *Note, none of these make me a professional, so advice I give is not professional advice.

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    Starting about in March 2014, all of these posts are originally published on Autism Spectrum Explained's Facebook page, and later reposted here for archiving purposes and easy access for ASE readers, including those who don't use Facebook. 

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