Rylan Awareness

So, today is World Autism Awareness Day. Folks wear blue, put blue lightbulbs in their homes, and change their Facebook profile pictures. Before I had an autistic child, I thought this was silly. "Autism awareness," I thought, "I'm aware of autism, who isn't?" If you are thinking similar thoughts, read on and I'll tell you why I've come to believe that raising autism awareness is vitally important.

First of all, when pre-Boog Megan said she was aware of autism, this is what she was aware of:

For the record, Rain Man awareness is not autism awareness. Rain Man is a fictional character and the movie is more about Tom Cruise's journey towards non-douchebaggery than about raising autism awareness.

Now, autism is a bit more visible in the media and just in general these days, so now someone who doesn't personally know someone with autism might have this kind of awareness:

As awesome and inspirational as she is, Temple Grandin awareness is not autism awareness, either. Here's why: If you don't know someone with autism personally and you see Temple Grandin casually presented in the media, it can be very easy to say, "Oh, look, she overcame her autism and is successful, so all autistic people can do that," and then you can forget about autism secure in the knowledge that, with enough determination and tight squeezes, all autistic folks can become Temple Grandin.

For the record, yes, many children with autism can and will grow up to be Temple Grandins, but it takes a village, a LOT of work, and more money than you could imagine to make that happen for most of them. Rylan is 3 1/2 and I've estimated that he's already spent nearly 1000 hours in therapy, and we've spent enough on his medical and behavioral care to finance half a decent college education (and that's with insurance).

The "work" aspect of autism isn't terribly visible. In fact, I myself have been guilty of wanting to constantly present the soft and fluffy side of autism because I want people to love my boy and realize that he's a valuable and loving human being. He is. He also doesn't feed himself, isn't potty-trained, doesn't talk, doesn't sleep, has trouble following the most basic of instructions, is nearly impossible to discipline since he's nearly impossible to communicate with, and likes to lick his hands and rub his spit on unsuspecting strangers. Not so pretty, right?

That brings me to the second aspect of autism unawareness that troubles me: the fear. I remember the first time I saw the "1 in 110 kids have autism" ads in a magazine. I was probably 18 or 19 and I thought, "Dear God, how terrifying!" I was so scared I would have a child with autism and I thought it was one of the worst things that could ever happen to a parent. I thought that right up until I met Rylan. Rylan is not scary. He loves to dance. He can't pass his sister, dog, cat, father, or me without giving us a big bear hug. He likes to be held while he falls asleep. Being tickled makes him laugh. None of that is scary.

I'll tell you what is scary, though, the crushing responsibility of being his parent. Will I ever be enough to help him reach his full potential? Will I have a strong enough voice to advocate for him? Will I be able to make enough money to get him the services he needs? Will I be able to make him understand there are dangerous people and things in this world? Will I be able to keep him safe? Will I be able to erase the sting of being made fun of, stared at, pointed at, and (God forbid) beaten up for being different? Will I be enough of a friend for him should he end up friendless? Will I live long enough to provide for him as long as I possibly can?

Nobody is talking about these things, but I don't know a single parent of an autistic child who isn't thinking them.

So, why should someone without an autistic loved one care about the work and the money and the false fear and the real fear? Well, setting aside the idea of basic human compassion, I'll tell you why: if you don't have a loved one with autism yet, you will. The incidence of autism is climbing and is now at 1 in 88 and may be higher for some populations. We need to face the fact that we're all going to need to learn to speak autism soon. I guarantee you you will, at some point, have to interact with an autistic person in the course of your life no matter what your profession or parental status. Parents and teachers and therapists of autistic children are working hard to equip them for interacting with a public that doesn't understand them, a public that isn't truly aware. I contend that we'll all enjoy better results from autistic/non-autistic interactions if non-autistic folks try to meet autistic folks in the middle, though. If you're trying to have a conversation with someone who only speaks German, it makes sense to try and learn a little German if they're trying desperately to learn a little English, right?

You should also care because if you don't take the trouble to get to know someone with autism, I promise you you're missing out. Rylan has taught me to slow down and appreciate the most mundane details of life. He's taught me greater sensitivity and compassion. He's teaching me, daily by example, to be courageous and work very, very hard. He never, ever gives up no matter how hard a task is for him and he is always happy to go to school and therapy even though both mean a lot of hard work for him. Living in close contact with a person like that changes you for the better despite all the work, energy, time, money, and fear.

This is long and possibly a bit jumbled. I have a lot of thoughts about Rylan and autism that are hard to express. My most important one, though is, that we need World Autism Awareness Day not so people can become aware that autism exists. Unless you've been living under a very big rock for the past 100 years, you know that. What we really need is Rylan awareness and Jack awareness, Lily awareness, Carter awareness, Liam awareness, Tony awareness, Caden awareness, Bean awareness, Ashton awareness, Leila awareness, John awareness, Seth awareness, Alex awareness (just to name a few of the autistic children I have the privilege of knowing in real life and through an online support group). They're each beautiful and intelligent individuals. They're not scary and they are working hard and so are their parents, and they're growing up in your world.