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Apr 02 2014

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Why I’m Not Lighting It Up Blue

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Today, April 2, is World Autism Day.  April is Autism Awareness Month, and I guess the 2nd is the jewel in the crown.  Today is Light It Up Blue day.

I, being at least vaguely aware of all things autism (pun intended), knew about 4/2 and the Light It Up Blue campaign.  I dutifully went to my local hardware store and bought a couple of blue light bulbs.  They’re only 25W, but hey, what are you going to do?  bluebulbs

Lighting a blue light bulb on April 2nd is supposed to tell the world that I am “Autism Aware.”

Trust me when I tell you that I am very aware of autism.  Every day is autism day at our house.  It’s been that way for nearly a decade.

If you need to see a blue light at my house to know that I am aware of autism, I’ve been doing something wrong all these years.  Further, isn’t acceptance what we’re all looking for?  Awareness highlights our differences, where acceptance embraces them.  I stole that from somewhere, but I like it.  I addressed this in a post a while back.

I got to researching Light It Up Blue, and found it’s a trademark of Autism Speaks.  Autism Speaks has been at the center of much controversy, and it turns out they’re not very well appreciated by people on the autism spectrum.  For starters, they support eugenics, and are looking to “cure” autism.  Many with autism don’t feel they need to be cured.  They are just fine the way they are and wish only to be accepted and made to feel part of the whole.  Not only that, but less than 9% of the millions made by Autism Speaks last year went to helping or supporting those with autism or their families.  Millions goes to paying the executives.  In fact, if you buy the “official blue light bulb” of Light It Up Blue day at Home Depot, you’re supporting Autism Speaks anyway, as the Depot’s co-founder is on the A.S. board.

Anyway, there are those who are much more eloquent than I:

OMum22 of smallbutkindamighty.com (SBKM) does a really nice job laying it all out for you.

Referenced by SBKM, Timetolisten.blogspot.ca offers an alternative to lighting it up blue called Tone It Down Taupe.  The post has a fantastic tutorial on how to create your own taupe, beige, or other mellow-colored ribbon to show your support for those without autism.  It’s taupe to reflect the dull sensory processing we non-autistics have, it’s huge to reflect on how few people have autism, and it’s got googly eyes glued to the front to represent the incessant begging for eye contact people with autism have to endure from those of us without.  Really funny, very tongue-in-cheek with a serious undertone.

As mentioned by SBKM, lots and lots of Autism Speaks’ money goes towards paying executives, etc, etc.  That’s why I support the Autism Society of Maine.  The ASM does amazing things with its funds and creates and support programs for/by people with autism right here in Maine.  Here’s a link to where/how they spend their cash.

We’ve been to the ASM Family Retreat weekend every year for years and years, we (Beth and I) are both Autism Information Specialists, and are first generation Sibshop Facilitators, having attended a multi-day course in Portland which was payed for by the ASM.  We have been indescribably supported and helped by the ASM, and though their trainings and programs, try to give back to those in Maine who need it.  This is also why we walk in the ASM Walk for Autism every April.  It’s their biggest fundraiser.

At the end of the day, regardless of what color light bulb we use, we want Jake to be accepted by society and to find his way in life.  We want him successful, but most importantly, we want him happy.

That being said, if someone develops a “cure” for autism, I’ll be first in line.  I love my son, and I will always love my son, but if he didn’t have to face the struggles he faces on a daily basis, that would be a blessing.  I also respect those with autism who aren’t as eloquent as the guy/gal who wrote about Tone It Down Taupe.  I am purely assuming that the post was written by someone with ASD.  I recognize that one man’s opinion is just that – one man’s opinion, and it’s impossible to speak for every person in a large population.

There, disclaimer over.

 

 

 

 

 

 

 

About the author

BigCalfGuy

BigCalfGuy

I am a 39 year old, married, father of three amazing children; one of whom has autism. I fancy myself as more Atticus Finch than Holden Caulfield. Dynamite with a laser beam.

Permanent link to this article: http://www.bigcalfguy.com/why-im-not-lighting-it-up-blue/

4 comments

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  1. Lia

    I know this post is a bit old, but I came across it today. As the “Lia” mentioned on the Tone it Down Taupe page, I thought I’d let you know that all three of us who were involved are professionally diagnosed Autistics, and all three of us identify female. 🙂

    And I’d certainly hope that while you would be excited for a cure, you’d let that final decision be made by your child, not you. Some of us like ourselves exactly as we are!

  2. Maripat Robison

    Autism Speaks doesn’t speak for me, either. Light it up #Acceptance #Appreciate

  3. Wanda Bourgeois

    you are very eloquent and can be understood by those of us who are trying to understand and accept. I thank you for all that you do

    1. BigCalfGuy
      BigCalfGuy

      You are very welcome, Wanda. Thanks for the compliment.

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