I’m a non-autistic mom who is blessed to parent an autistic daughter along with her two sisters. She’s an amazing, incredible young lady who is one of the three brightest lights in my life. This Sweet Girl finds being autistic to be a wonderful thing, something that she needs, something she doesn’t ever want anyone to take away from her. She says it makes things hard for her but she still needs it or she wouldn’t be who she is. She finds it shocking and appalling, and it hurts her deeply that even if Autism can make life difficult enough to cause some disabilities, that anyone would think up the idea, let alone that it’s a good idea, to cure anyone of Autism. She finds the notion of vaccines causing or having a correlation to Autism as ridiculous and silly. She can’t find words to explain how odd it is that she should have to defend her existence, or that anyone would insist on separating her from one of the very things that makes her the Sweet Girl that she is.
“Without Autism, I would not exist.” ~Sweet Girl
And so, with that reminder, I’ll just add my caveat now, before April: we shall NOT light up anything blue. We do NOT support puzzle piece comparisons. There are autistic self-advocates and bloggers who explain why far, far better than I can because it’s not my life on the line… it’s theirs. I value their opinions highly, especially those women who I’m so grateful to have found to show me what my daughter’s adult voice might appear like. Through their suggestions and sharing of experiences, it’s helping to make our journey through her childhood and my parenting go more smoothly. I enjoy the insights as much as I appreciate them.
Women like Amy Sequenza are your child. So I’m going to share two of her blog entries.
Why Autism Speaks Hurts Us – Amy Sequenza
Is Autism Speaks a Hate Group? – Amy Sequenza
Plus a bonus one from a different blog.
And I’d like to suggest looking up #BoycottAutismSpeaks. You won’t regret it. Oh yes, and this handy dandy info-graphic. Share it. Download it. Memorize it. If you’re a parent to an autistic individual, pay special attention to the organizations that help autistic people. Include the Autism Women’s Network in there too. They’re pretty fabulous.
You may say, “But my child is autistic and we went to Autism Speaks, and they were really good!” or “But I know someone who speaks very highly of them because of their experience!” My response to that is, “Great. Good for you, I’m truly happy for you.” The issue I have is that any money you donated went towards research to remove the uniqueness from your child that makes him or her who she is. And if nothing else, even a stopped clock is right twice a day. I mean, last year even Autism Speaks came out and said, “Hey y’all, get your kids their measles vaccines.”
And on the Today Show yesterday, their founder, the father of an autistic son, floundered over how amazing his organization is for parents. Parents, not the autistic individuals. The support is there for parents who are stuck in the loop of believing Autism is a tragedy that happened to them through their child, or that God is punishing them. Parents who believe their child is damaged, sick, and imperfect. Not whole. Hiding behind the Autism. The Autism took them away. Broke them. And you know what? Matt Lauer sucked it all up with a dewy eyed spoon. He may have been a little drunk.
Parents… I remember that initial shock and the feeling of wondering what to do next. I remember wondering what *I* was going to do. It took me too long of wondering “why me and my child, why my family” before I was hit with the bitch stick. It’s really not about me, it’s about this spirited young lady I’m privileged to parent. The only “me” part about this was what was I going to do for my child and how to teach her to self-advocate. How would I teach her to become an adult that could navigate an amazing world.
Your child needs you. Show your child how amazing the world is and you’d better remember that the world is still amazing. The world is only as small as you allow it to be. The world is only as tragic as you allow Autism Speaks to let you think it is.
Stop the silencing of Autism Speaks and listen to the autistic self-advocates.