I would love it if as a mom and ally, I didn’t have to defend Autism. Little babies and children don’t need to be protected from Autism at all costs. I would love it if society didn’t treat Autism in that way. I hope that my Sweet Girl never has to defend Autism. She should never have to defend her very existence. I’ve been thinking about a conversation I had with her a couple of weeks ago that I drafted, and am finally sharing.
My Sweet Girl recently found out that there are people who think Autism is Very Bad and want to cure it, prevent it, stop it, and that they spread misinformation about it. When she heard a doctor and someone else who was supposed to be some expert talk about the MMR vaccine and Measles, the pros and cons, the arguing and veiled insults, she shot her head up as soon as the woman (not the doctor) brought Autism into it. She said something negative about preventing ASD, curing ASD, blaming the MMR and epidemic rates, and the usual propaganda prattle. The Doctor thankfully had his head on straight and refuted the claims this loon was making.
The look of confusion on Sweet Girl’s face would have been amusing under any other circumstance, but I knew by the quickening of her breath that she had some understanding of what that woman said, and it wasn’t something I was ready for because I worried that it wasn’t something she was ready for.
And so I was cursing the Today Show for ramming the measles/vaccine/autism discussion during school-preparation time.
“Why did they say that? What did they just say?”
“There are some people who think Autism is caused by traumas, errr, injuries to the brain. There are some people who think that vaccines cause an injury that makes Autism, and that vaccines can cause other injuries so they don’t trust vaccines. People are getting the Measles right now because a lot of people stopped giving their children shots. They think Measles is safer than the shots.”
“That is stupid, shots are medicine. You need medicine. Shots stop sick before you get sick.” ::dirty look:: “I don’t like needles.”
“I don’t like getting shots either.”
“I do not want to take away my Autism,” she said, pronounced like AWT-izm.
And then the hard part.
“Why do people want to stop my Autism? Then I would not be here,” and there was an edge of hurt in her voice mingled with disbelief.
“I don’t know the answer to that, honey, except that maybe those people just don’t understand Autism or how to look for the talents instead of the stuff in Autism that makes things hard for you and other people like you.”
“Yes, it is hard. I need my Autism. I love being… what is the word? I love being Autism?”
Tears started to well up.
“The word is ‘autistic’ sweetie. Do you love being Autistic?”
“Are you happy?”
“That makes me happy. I love you and your Autism.”
With a nod she walked away. As you can see, my daughter is kind of amazing. Just like her sisters. In her own words, at only 12 years old she let me know in no uncertain terms that she doesn’t want a cure. She thinks the idea of being injured is stupid (we’re working on reducing the ableist language like stupid and idiot, sorry it slipped in). She’s shocked at the idea that anyone would want to change who she is or prevent more people like her from being born.
She’s delighted when she finds out that other classmates or other peers are like her. There’s a sudden new understanding and behavior shift with them when she finds out, and they’re just happy to “be.” She has a compassion for difficult behaviors when she knows that they might have autism or something similar.
As I said, she’s kind of amazing.
We’ve been honest and open with her about Autism from the beginning when we realized it helped her to know. It helped her form questions when she had them. Since she’s known for so long, since she was 4 1/2 or so, she’s never “not known” that she’s Autistic. I trust her instincts.
She knows that there’s a reason she thinks differently, works things through differently, does things at a different pace, has different talents, approaches things differently, has certain obstacles and challenges that are really difficult and upsetting, but because we accept every single part of her she accepts every single part too. Behaviors that she actively dislikes, or knows that need to change because they could be dangerous because we’ve talked it out, she works hard on. She asks questions and she watches. She tries. She does a lot of watching and experimenting. She doesn’t fear herself, and I don’t fear her. If something seems impossible, we see if there’s an accommodation to make it easier. We adjust. We accept.
I don’t feel sad for her. I don’t want anyone to feel sad for her. I don’t want anyone to think that she’s miserable or suffering. She’s not “suffering with Autism.” She’s autistic, and she’s not suffering. She’s growing into a young woman. Would anyone say she’s with femaleness? And suffering with femaleness? Or she’s suffering with blondness? She’s not. The autism is as much a part of her as her talents to make crafts, draw, paint, write stories, sing, connect with babies and toddlers and animals.
I know she’s going to have opportunities and she’s going to find her own way. I’ll encourage her talents and continue to encourage self-advocacy and education about her own disabilities. I’ll protect her and teach her, guide her, answer her questions, and hope that I’m doing this the right way while I try to learn more about her every day. She loves to learn about herself. She looks at me with impatience, though, when I ask questions to try to learn more about what’s inside her thoughts processes.
“You ask too many questions.”
Yes, honey, and it will never stop.