Here's an asterisk to yesterday's post:
First of all, I didn't really Light It Up Blue since I didn't put a blue light bulb in front of my home. Partially because I don't have my own home, I live in an apartment. Also because I didn't want to have to buy something. Also because I was not in town during the big Light It Up Blue day. Still, I wore blue. I explained a bit about why I'd planned on it a few days before, but after reading so much negative rhetoric from people in the ASD community, I'm bringing it up again.
For me, wearing blue and encouraging others to do the same isn't about supporting a particular organization; it's not about an agenda to "cure" Autism; it's not about promoting certain kinds of research. It's about saying, Hey, I'm raising a kid with Autism, and as a result, life's not always easy for me, and it's certainly not easy for her. I'm not trying to change her. Rather, I'm trying to change the world around us- trying to help people understand the way she functions and why, so that they can help us make accommodations to make navigating the world a little bit easier. Each person who sent me a picture of him or herself wearing blue to show their awareness and acceptance for those living with Autism (including the parents raising kids on the spectrum) is part of my village. They're the people I am relying on to understand that there's nothing weird, crazy, dysfunctional, or unacceptable about my Little Bird. I need that. I need them. I need to know that the world will be loving and safe for my girl.
Yes, Autism Speaks is behind the Light It Up Blue campaign and the World Autism Awareness Day stuff, too. It's also likely that the goal of the campaign is to raise money for their non-profit. You know, because that's what businesses do, whether they're for profit or not. Do I always agree with how Autism Speaks runs their business? No, but you know what? I bought some food at Whole Foods last week despite the fact that I'm uncomfortable with their CEO's outspoken disdain for Obama. Some of you might even be pro-choice but still order pizza from Domino's despite the fact that their founder contributes heavily to anti-abortion causes; or you might believe in equal human rights but still shop at Walmart despite the fact that they refuse to provide benefits to domestic partners except in states where it's required to by law.
There are many self-described Autistic Self-Advocates who resent the language that Autism Speaks uses, which can be interpreted as looking to "cure" something. As well, there appears to be no one with Autism on their board or in leadership positions within the organization. I get that.
I respect the Self-Advocates and their great work to remove the stigma of the Autism label and move toward a more inclusive, neuro-diverse environment. I am so grateful that there are adults with Autism who are willing to be so outspoken and to make a difference in the world around them. I also recognize that the spectrum is broad- so so so broad. While many Autistic Self-Advocates might share the same diagnosis as my daughter, many of them seem so different from my daughter. I hope that one day she, too, will be able to speak and/or type and express herself and her points of view, feelings, etc. But for now, she cannot. That's one of the many reasons I just don't feel like she and I (we are living this life together, after all) can relate to everyone in the Autism community- and that's okay, by the way. After all, that's what diversity is all about, isn't it? I do very much appreciate the work Autism Speaks has done to raise awareness about Autism and educate the public (read: those who aren't living with or raising someone with Autism).
So, thank you to everyone who joined me in raising some awareness for the fact that there are many different kinds of people with Autism in the world- many would say there are more today than ever before- children and adults alike who deserve to live in an accepting world. We don't all have to get along with each other, but we do have to get along. So, you know, let's just do that.
I'm not taking a stand with any one faction or movement or organization or group of people. I don't participate in the name-calling, blog-trolling, or in-fighting that goes on within the Autism community. Ain't nobody got time for that. For reals, though. I'm too busy raising a kid who has a tough time figuring out the world around her. Because that's that what Autism is like here in my home.