{image is a hand painted mosaic rainbow lightbulb and the beautiful, multicolored light which it casts.
Click on the image to order one from MoodLights on Etsy, with whom I have no affiliation whatsoever}
As many of you know, after years of trying desperately to change the way in which Autism Speaks approaches autism advocacy, I reached my breaking point last November after Suzanne Wright made it clear with her “Call to Action” that they still have no intention of listening to those whom they purport to represent.
It broke my heart to give up on the possibility that they might finally see the light — the one illuminating the glorious breadth of the human spectrum upon which we all reside. There are good people within the organization whom I was loath to walk away from: the people in the trenches who get it, who work tirelessly and try desperately to change the destructive message. But leadership has time and time again patently refused, and continues to refuse, to stop demonizing autism in the name of “helping” autistic people.
Continuing on their path of shock and awe and disease-model fundraising, they press on dehumanizing their supposed constituents and, in so doing, sacrificing the present and the future for my child and all of her autistic siblings, all in the name of finding a “cure” for something that many if not most of them, while they need support and services to live their best lives, have no interest in being “cured” of.
I could go on about my frustration and disappointment for days. I could links to posts like this one written by our allies in the disability community or this one by a fellow parent and others by autistic activists that I really hope you’ll read, like this one and this one and this one. But I’ll get to my point, and yes, I do actually have one.
Yesterday, I read a heart wrenching post by Bridget over at It’s Bridget’s World called It’s My Blue. She wrote it back in April, but it was new to me. As I read, I was reminded of something that I’d managed to completely forget in all those years that I was, like a good soldier, buying into the sadly misguided idea that I was helping my child by lighting my house blue and begging my friends and neighbors and even the President to do the same “in honor of my daughter.”
Forget that the entire campaign is, in reality, antithetical to everything that I actually want for her in life – pride in who she is, opportunity, safety, support based on a presumption of her competence and ability.
Forget, if you can, that the real premise of what I believed to be “raising autism awareness” was really raising brand awareness in order to raise money for research into how to create a world without autism, or, to put it another way, to eradicate future generations of people like Brooke.
Forget that the campaign that I wanted to believe was about compassion and acceptance was really about spreading fear and panic at the expense of my child’s well-being.
Forget that the lion’s share (less a pittance to community grants and a conversely healthy sum for overhead) of the money raised went to research, and most of that into a feverish search for causality rather than into the efficacy and long-term effects of commonly used interventions or the establishment of a support infrastructure or advocacy for access to education or employment or healthcare or technology or any single God damned thing that would actually make my child’s life better or easier or safer.
Forgetting all of the reasons that I might have once bought into for lighting the world any color at all, let’s talk about why that color was blue.
From Autism Speaks’s 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 than among girls. So, the color blue represents the boys diagnosed with autism.”
The color blue represents the boys diagnosed with autism.
More and more over the years it became painfully obvious to me that autism speaks did not speak for my daughter. But this? Well, somehow, oddly, this hurt even more today than any of this has in a while.
Because it shows that even within their own disastrously flawed paradigm, they don’t even bother to acknowledge that she exists.
Ed note: On a related note, Please check out Educate Sesame, a flashbog lovingly written by autistic people and those who care about them, dedicated to educating Sesame Street about autism from the autistic perspective and asking them to reconsider their partnership with Autism Speaks.
a diary of a mom 
This not only saddens me but makes me very angry for all the people that Autism Speaks chose and still chooses to ignore. Brooke and so many “Brookes” should never be invisible to anyone.
Love you,
Mom
I know this is only a small part of your post (and maybe I am inferring the wrong thing) but regardless of which organization you were affiliated with at the time, I think the opportunities you had to speak to the White House representatives made a difference, not in their embracing a particular organization but in their awareness of autism among individual people. It was not work done in vain. And Moodlights are beautiful. So are you and your family. THAT IS ALL. 🙂
How did I not know that? I guess because someone warned us off AS early on, and we just sort of “went with it” we never fully engaged in the puzzle piece, light it up blue thing…but I always HAVE wondered…”why blue?”
As a parent of a “pink” child… just another brick in the wall.
Yep. I was flabbergasted when I found that out. One more way in which, while many argue that their tactics are necessary to drawing attention to the needs of autistic people, what those tactics are actually *doing* is probably *preventing* people from getting needed help and intervention.
We already know that girls are probably still vastly under-diagnosed, which means growing up and going through school without needed supports and understanding, because the popular image of an autistic child is a boy.
And oh look, Autism Speaks is *contributing* to that dynamic, which is directly contributing to ignorance of the issues of autistic girls.
As the parent of an autistic boy, this pisses me off. I just went all ranty on their site. UGH. Thank goodness we have you and all the autistic adults you’ve introduced us to as an inspriation and educational beacon for autism
Thanks to Autism Speaks’ form of “advocacy,” I have family members who very freely admit they don’t want to have children unless they can guarantee they will be girls, because they are afraid of autism. I’ve had friends actually express relief after their twenty week ultrasounds revealed they would have girls, and I had one person tell me I should think twice before having another baby, unless I can have a girl next time, because girls aren’t autistic. The amount of lies and deceit and untruths and fallacies that come out of that organization are disgusting. It’s message is one of fear and outrage, and strips the dignity of the autistic person and their family members alike. You very succinctly put into words what my hurt and anger cannot. I’m thankful to have your voice, and I’m thankful my children have Brooke’s.
I feel so sad for those little girls if they turn out to be autistic. Not for being autistic, obviously, but for what they’ll feel if they have to see their parents realize that they are exactly the kind of kid that they didn’t want to have.
Fear sells. Nothing mobilizes people like fear does. Isolated, scared and stressed parents of autistic kids are easy to control through fear. That’s how Autism Speaks grew big and powerful.
With the help of Brooke and others like her, Jess has eventually come to reject fear. Now she promotes love. And love is the only thing that stands a chance against fear.
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Hi Jess, I’m autistic and I just discovered your blog recently and I’m kinda binging on it, as one does. Somehow I got from a godspell post to here? -shrug- but anyway I notice that you link your letters to the president about lighting it up blue on the side of the page under the “if you’re new around these parts” and in light (heh puns) of this and your renunciation of A$ (which, good for you!) maybe you should remove it from the sidebar? Since you no longer support that effort? Anyway thanks for a good blog and have a nice day!
Indeed. Thank you for the heads up – I never look at that stuff. I will change it as soon as I can get to my desktop. And welcome!
Thank you for featuring our image with your post. We’d love to offer your readers FREE SHIPPING for the month of April for Autism Awareness Month. Simply use the coupon code: LIGHTITUP on Etsy.
Yay! Thank you! I love the light!!!!
Love your blog Jess,
Interesting article in todays Observer,
http://www.theguardian.com/childrens-books-site/2016/apr/03/autism-voices-books-awareness-week
Debbie