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Blue Lights and Rainbows

April 1, 2013

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“We believe that we invent symbols. The truth is that they invent us; we are their creatures, shaped by their hard, defining edges.”
― Gene Wolfe, Shadow and Claw

It’s that time of year again. A time of year that should unite our community, and in many ways does. But it also drives a sharp wedge between so many of us. Blue lights and puzzle pieces. To the outside, neurotypical world they seem so innocuous, but here, in this community, such simple symbols can set tempers flaring.

April is Autism Awareness Month. A few years back, the United Nations designated April 2 as World Autism Awareness Day. It was the first time that the UN had recognized a developmental disorder in such a way. Autism Speak almost immediately latched onto the idea, and launched the Light it Up Blue campaign. To many parents, the community of support provided by an organization like Autism Speaks is invaluable. Unfortunately, they often seem to forget that those same parents are raising the next generation of autistic adults, a group of people that are largely ignored by Autism Speaks.

They are the single largest autism charity and lobbying power in the world. They are constantly in fundraising mode, and as such have a large war chest of influence to wield over the general community. They have so much potential to be the voice for so many. It is difficult for me to consider turning away from such a huge source of potential good for my children. But as much as their slogan, “Autism Speaks, It’s time to listen,” is touted on their bumper stickers, so often it would appear that when autistics speak, Autism Speaks turns a deaf ear.

When they produce mini-documentaries, such as the one they recently made, and they have parents saying things like, “well, he’s really sweet, uh, for an autistic child..” It hurts our community. It sends the exact wrong message.

When they treat autistics as a diseased population that must be cured and prevented, it does all of us – autistic and neurotypicals – a great disservice. They could be opening the door to conversation, to encourage acceptance of our differences, to encourage neurodiversity, and instead, they not only slam the door shut on the celebration of those differences, but they send a far worse message. They tell our children and our adult autistic friends that they are wrong. That they should be at war with a part of themselves. They tell our children that the very thing that shapes every aspect of how they perceive their world is wrong and needs to be removed.

But still, I am a forgiving and hopeful person. I want to believe that with the recent change in leadership at Autism Speaks that we will see some improvement, some change in messaging. I want to believe that we can all work together to change the conversation. This is an organization that has the cash flow and the influence to truly help – to encourage more accommodations and acceptance on a broader level. But without us continuing the conversation, this will never happen. I can’t say I support them, as they exist right now, but I do feel that our community needs them as a lobbying group. We need them to help get the message to folks in Washington and in local government. But we need to help them reshape that message.

As a mother, I try to take the lead from my children as much as I can. We have been celebrating Light it up Blue Night for a few years now. All of my children look forward to April 2 as though it is another birthday celebration. We have never really looked at it as an Autism Speaks thing, so much as a celebration of their autism – a celebration of that very special part of them that gives them this amazing community. We see it as an opportunity to talk to our friends and our classmates and our community about our differences in a positive way. And I have long looked to this community as a source of support, encouragement and advice. There simply is no guidebook, no roadmap for this journey. I am learning as I go. I have been blessed over this past year to get to know some autistic adults and some self-advocates who have given me valuable advice and insight on parenting and advocating for my amazing children. Words simply cannot describe my gratitude for that.

But once again, I am seeking advice from this community. I simply do not know what color light to put out on my porch tonight. My guess is at least one will be blue, and I will tell you why:

Troy often asks me if the autism color is blue because his favorite color is blue. He loves the blue lights. They make him happy and they make him proud. He is unaware of the politics of Autism Speaks, just that they started this fun way of celebrating who he is (and I sincerely hope that by the time he is old enough to understand all of this, that is exactly what they will be doing – celebrating autism instead of curing it).

There will be puzzle pieces. I know this is another controversy within the community. Many autistics are concerned that the puzzle pieces represent autistics as incomplete parts of a mystery. I don’t see it that way. I look at the puzzle pieces much like the early Christians looked at the symbol of the fish as a sign of Christianity – I’m pretty sure no one thought Jesus was a fish, but he was friends with some fishermen. And Joyce, well, she loves puzzles. Puzzles and princesses. 😉

So maybe this year, instead of just the blue lights, we’ll have three different colored lights. And maybe instead of just the puzzle pieces, we’ll have some cars and some penguins (have I told you of Mary’s love of penguins? Story for another day, but yes, she loves penguins!)

Just this morning I was telling Troy a little about the blue light controversy, and my quandary about what to do. I told him that the blue color is actually for a company that works on the autism field, but not necessarily an autism color. Then I showed him the multi-colored symbol that is being used for Autism Acceptance Month.

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He pondered for a minute and then said he likes this one better than the blue puzzle pieces. But he still wants his blue lights. Maybe even more of them this year.

And so, as it is with many big decisions in our house, the eight year old has spoken, and the blue lights will go up, but not without the extra symbols for autism acceptance. Because at the end of the day, this isn’t about politics. This isn’t about debate. This is about doing everything I can possibly do to make sure my kids know that theirs are the voices I will always listen to above anyone else’s – especially when it comes to autism. And if that means blue lights and rainbows, then I apologize in advance to my neighbors, because it’s about to look like bit like a disco over here. 😉

For those of you who are new friends, here is the post I wrote last year about April. This is not an easy parenting journey, and in fact at times it has been downright hard and even terrifying. I have leaned heavily on this community for advice and support over the last few years, and only recently have I come to realize what the blue lights might mean in regards to specific organizations as opposed to our autism community – parents and autistics – as a whole. But in my heart this sentiment of community remains the same.

In the early days of Christianity, believers wore a small symbol of a fish, as a sign to recognize each other. During the days of the Underground Railroad, houses that were sympathetic to the cause and willing to offer shelter to those on the journey would light a candle in their window.

That’s what the blue lights mean. That’s what the puzzle pieces are. It’s a sign that says to those of us on the journey,
“I get it.”
“Me too.”
“You are welcome here.”
~ from my own post, Community

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A beautiful Autism Acceptance geometric pattern design by Because Patterns
You can purchase some of her work at http://www.cafepress.com/becausepatterns

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