|One of each...|
Sometimes Emma struggles. When she doesn't make the talent show. When a friend says something cruel. When she worries about a test. When she can't land a side aerial. When she wishes she was in the honors program. When she wishes she wasn't one of the smallest kids in class. When she wishes she didn't have such a hard time trying new foods. When she can't decide between softball (because she thinks it will break her father's heart if she quits) or dance (because that's what she really prefers).
What I want autism parents to understand is...it doesn't hurt my heart any less than it does when Lily struggles. When her horizontal pencil strokes are weak. When she has an accident at school. When she doesn't eat. When she can't participate in something her typically developing peers are doing.
They're both my kids. I don't ever think, God it hurts my heart that Emma is sad about not making the talent show, but at least she's not autistic!
Observing Facebook, Twitter, and the blogging community I see daily (on my lunch break, of course) where autism parents rail about NT parents' problems. My close friends in the autism community do it. Every day. I see it in the form of:
- A rant about an NT parent friend/acquaintance bragging about son/daughter's honor roll/soccer team/dance performance, etc.
- A rant about an NT parent friend/acquaintance complaining about son/daughter's struggles with (insert sport/school activity/etc).
- A rant about how offended we were that NT parent friend/acquaintance asked stupid/insensitive (but well-meaning) question about our children.
- A rant about how hurt we were that NT parent friend/acquaintance won't bother to even educate him/herself by asking us questions about our children.
And what I think every time I read one of those posts is, if I didn't have an autistic child I would be doing each and every one of these things. I am "educated" about autism solely by virtue of having an autistic child. I wouldn't know the first fucking thing about autism if it wasn't for Lily. I would ask the questions..."does she make eye contact?" I would say, "Is she really good at math?" I might argue, "But she seems happy and smiles!" I would complain that Emma didn't start at pitcher. I would brag that her team won the championship. I would shy away from asking questions that I feared would come across as insensitive.
I get it. I do. There is a definite difference between wondering whether your child will make honor roll or wondering whether your child will ever learn to read. That's perspective. But NT parents love their kids no less than we love ours. I know this because I'm the parent of one of each. And I will be damned if I'm going to censor someone from bragging about how awesome their kid is doing, or how heart breaking it is to see him/her struggle, even if that struggle seems trivial to me, or the success unapproachable relative to my autistic child. They love their kids like we love our kids. Their lives should not be framed around my daughter's neurology.
I think what bothers me the most is that sometimes the same people arguing that NT parents need to become educated about autism are the same people who get butt-hurt when given an opportunity to provide that education.
I can either answer the question, "Is she really good at math?" with "No, autism doesn't mean she's a fucking human computer, asshole," or, "Actually, they say about 70% of kids on the spectrum struggle with cognitive/intellectual disabilities. We're not sure where she falls, but she struggles to communicate on our terms so it's hard to be sure what's going on in her brain." Those sorts of things are difficult to come up with off the cuff when they seem insensitive and the easiest response is just to lash out instead. And I'm not saying my life or Lily's should become someone else's teaching moment. I'm just saying, the same perspective that we supposedly gain by virtue of having an autistic child, we somehow selectively forget when given the opportunity to apply it to our NT parent friends.
I try to talk very candidly to friends about Lily's successes and struggles. I don't know if it makes them uncomfortable that I'm excited about something like "asked me a question appropriately." Maybe they're on more comfortable footing when I share Emma's successes and struggles because they get the frame of reference. Regardless, I also try to celebrate their kids' successes with them...and lament their struggles. They love their kids no less.
I'll probably realize I'm wrong at some point, but I feel like I've reached a really good place with Lily. I feel like I accept her completely. But before I got where I am with Lily today I wondered how to accept autism. Before I wondered how to accept autism I wondered how best to spread awareness. Before I wondered how to spread awareness I wondered what had caused it. Before I wondered what caused it I wondered whether I shouldn't have vaccinated. Before I wondered about vaccines I wondered about cures. Before I wondered about cures I didn't have an autistic child. Each new thing I 'learned' either built upon the last, or completely razed it to the ground and rebuilt it from scratch. I was totally adrift and I needed to understand. Needed to because my daughter was autistic. No other reason.
Before I had an autistic child everything I knew about autism came from "Rainman". Everything. Just like your friends. You don't like the questions they ask? Help them ask the right ones. You can't celebrate your friends' kids victories and support them during their losses? Then the problem isn't your friends' insensitivity or lack of perspective. The problem just might be YOU.