Monday, April 2, 2012

Be Aware!

Today is World Autism Awareness Day, and I'm doing my job to make you, world, aware of Autism, and what it could look like. Because in my experience, some of you still don't know.

I (very often) hear, "Oh, your son has Autism? But he's so social & talks so much!" I run to defend his diagnosis, "Well, but his social skills with his peers!" I blurt out. I'm usually able to stop myself there.

I used to end up listing all of our daily challenges, because if I could prove his diagnosis, I could prove my competence as a parent! I'd point out the difficulty we had transitioning him to solid foods. ("oh, but my kids are picky eaters, too. You can't say he has Autism just because he's a picky eater...") His adult-like language ("oh, well he's an only child & is around so many grown ups!" ...he's been in pre-school since he was 3. Not all only-children speak like grown-ups.) The difficulty we've had with potty training ("Oh, well my sister's kid had problems potty training...boys are just more difficult. That's not necessarily Autism, though..".) The difficulty he has changing a routine. ("oh, my girls hate it when we skip a story at bedtime, too. Routines are good for everyone.") The hand-flapping, the echolalia (repetition of words), the monotone speech, the inability to cope with loss (even if that loss is "You already had your treat for the day" or "I'm sorry, we can't buy the $24,000 playhouse"). The anxiety, the inability to recognize sarcasm, the fact that he still doesn't know all of his classmates' names/faces (after being in the same school for 4 years).

And yet, I think that because my son is rad in so many other ways, people assume his life is a breeze. There can't be anything wrong with him, look at all of his talents! His improvisational skills on the piano, for instance. His ability to memorize almost anything. His thoughtfulness. His mature sense of humor (even if he can't recognize or cope with sarcasm, he's an incredibly witty kid). His reasoning when looking at things objectively. His math skills are stellar, and when you're a grown-up around a 5-year-old who is trying to teach you how to play the piano? You'll become enchanted. As humans, we like small versions of bigger things (like kids who act like grown-ups). But because he's so rad in so many ways, people want to think that there's nothing "wrong" with him at all. In one sense, there isn't anything wrong with him. His brain functions differently. He has a different way of thinking, and in some ways it's way better than yours or mine, and in other ways his way of thinking is more challenging. In the same way, you have just as many things wrong with you.

Do I get angry when people question it? I get defensive at first, but I realize that deep down they wish for him to be a neuro-typical 8-year-old (at least the ones that keep pushing the issue do), and they have hopes that this is something he'll out-grow. (It's not. He'll find ways to cope, but his brain will always have a certain way it works, and that's good!) And I realize that the people who don't push the issue probably just don't have an accurate picture in their heads of what Autism can look like. And I love the people who genuinely want to know what it looks like for us.

So I challenge you, dear internet, to change your perception of Autism. To trust parents, teachers, therapists, and developmental pediatricians. To lend your emotional and physical support to frustrated & exhausted moms & dads. Honestly, it's enough on my plate to try to convince the child that he can overcome having to wear a new pair of shoes, try a different brand of canned corn, or take a bath... parents of kids with Autism (particularly High Functioning Autism) shouldn't have to prove to friends, strangers, and family that their kid is struggling.

The next time you see a child flipping out in a store, or a child not staying in their seat at a restaurant, or a mom or dad not forcing their child to at least try everything on their plate, or if a child doesn't say thank you, or goodbye. Or if your kid gets a toy taken away by another kid who has no idea why yours is upset. Don't assume it's bad parenting. And don't assume it's a naughty child. This is where the support comes in. We need your support with your understanding and your actions. With your kind eyes, and your ability to censor yourself.

If you'd like to know more about how you can help, advocate, or just learn about Autism, you can visit Autism Speaks. Pester your insurance company/legislature to be sure that Autism therapies are covered by all insurance companies everywhere. Offer to help out when a need arises. Listen. And just, in general, be aware that Autism has lots of faces. Most of them are incredibly adorable, and all of them need your compassion.