Feeling blue about lighting it up

b

April 2 marks Autism Speaks’ annual “Light it Up Blue” day. The awareness campaign is scheduled to coincide with World Autism Awareness Day. I didn’t participate last year, but I followed their posts about the event and liked pictures on Facebook. I thought it was an amazing activity that had real potential to help raise awareness.

Over the course of the last year, my feelings about this event and its sponsoring organization have changed. As I mentioned yesterday, my perspective has been influenced by the writings of adult autistics.

I resisted their complaints at first. The evolution of my attitude went something like this:

But the autism clinic referred me to Autism Speaks. How would I have found out more about autism after my son was diagnosed without their website?

Okay, maybe Autism Speaks does cater to parents, but who else is going to raise autistic children into autistic adults?

 Sure, that makes sense that I shouldn’t be getting my information from a group that does not have autistic people serving in major roles. I’ll make sure that I don’t donate to them, but I’m still going to listen to their message.

 I finally get it: the message is part of the problem.

This post  by The Caffeinated Autistic is a great reference that collects all of the complaints about Autism Speaks in one place. These are the facts that have influenced my decision not to participate in this event.

In all fairness, I will also be boycotting the “Tone it Down Taupe” campaign, too. Honestly, I am neither crafty enough nor motivated enough to make my own taupe ribbon-even if it could have googly eyes. Radical Neurodivergence Speaking writes here about the tongue-in-cheek response created by autistics that actually has a serious message mixed into the silliness.

For those people that choose to “light it up blue,” I hope they find it to be a positive experience. I hope their blue light bulbs prompts meaningful conversations with people that don’t know much about autism. For my part, I choose not to support the campaign.

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B is for blue.
This post is part of the 2013 Blogging from A to Z Challenge.

Pulling this post from the archives and linking it to the yeah write #155 moonshine grid to explain why I decided to #lightituptrue instead of blue this week.

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11 thoughts on “Feeling blue about lighting it up

  1. I certainly agree that Autism Speaks does not speak for everyone. And, like other large organizations (I’m thinking Komen Foundation), they tend to oversimplify the message and leave some people out of the fold. However, I have to hand it to them–it is due to their awareness efforts that so many people in my community know that there is more to autism than Rain Man. While other, smaller organizations–which I also support–are doing wonderful things, they simply haven’t the organization, funding, or ability to educate and inform so many. Again, I agree that often they don’t tell the whole story, or sometimes there are flaws in what story they tell. But the reality for me is, without the visibility that they’ve been able to achieve for families affected by autism, the public would be far, far less aware and educated than they now are. Also, before Autism Speaks came along, there simply wasn’t the research that there is now. The money they have been able to spend on research is impressive by anyone’s standards, and the strides that the scientific community has been able to make in understanding autism–not only the causes but the treatments, as well–have not been paralleled by other groups. Finally, the lobbying and legislation efforts; while not perfect (speaking as a family that feels left out of the fold from some of the legislation they’ve found acceptable) simply wan’t possible before they came along. So, for the research, visibility, and awareness they’ve achieved, I will continue to support them. However, for all of the other services that smaller organizations provide, I will also support them to the best of my ability, as well. I don’t understand why it has to be one or the other.

    • “Tone it Down Taupe” is a tongue-in-cheek response to the Autism Speaks campaign, so I’m not surprised you haven’t heard of it. And I should be happy that you aren’t familiar with “Light it up Blue.”

  2. I have a confession. Up until reading your post (and the others you linked to), anytime I thought of autism, I always envisioned a child. It’s as if I somehow imagined the challenges magically disappeared into adulthood. Reading this got me thinking about issues that I simply never considered before.

    • Your comment alone makes me glad I shared this post. I know it wasn’t the best-written thing I’ve ever published, but I’m glad that you took the time to read and learn something new.

  3. I had never looked into the info behind “light it up blue”; though I do see quite a bit of the posts traveling around facebook and such. I’ll be forwarding this info to a few family members. Thank you for posting this.

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