Monday, April 2, 2012

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.


  1. You are right on, all of this. I used to be so worried and scared, "What if something is wrong with my kid?" But now I'm more worried about being the mom he needs. And with the incidents of autism on the rise, I have to wonder... Are we sure WE are the ones who are "normal?" I think the world is better for having people with different capabilities in it.

    I have heard people talk about a cure. I admit, my kid is high-functioning and I don't face the same challenges you do, but the last thing I want for my kid is a cure. I want him to be the person he was born to be, and to equip him to handle life so he can live a productive and happy one, but I wouldn't change him for the world. I'll take the meltdowns over a small change in routine, and the chanting and echolalia, and the refusal to potty train, and the awkward social interactions - I'll take all that any day if it means I have the kid who can read at a 2nd grade level even though he's 3, who loves hugs and kisses and is fascinated by dominoes and rube goldberg devices and helping his daddy in the garden and can beat him at video games, and all the rest of the wonderful things that make him who he is. It's a good trade, in my book.

    You are dead on. We need awareness of WHO Autism is, not that it exists, but the people it affects. Thank you for this post.

  2. Megan, you're simply amazing with how you're able to put such feeling into words. You've helped me to realize that I had those exact same fears (of OMG autism has got to be one of the worst things that could happen) when we were TTC & pg. But geting to "know" someone like The Boog (even if only online through your words) it makes me realize that I'M the one in the wrong. It's MY original thinking and fears that are so wrong. We all learn to work with our kids to let them be who they innately are. Being the parent of an autistic child just takes that to an entirely different level with a different set of fears. Thank you for opening my eyes to see that a world with an autistic child is a beautiful one as well. And since I didn't know until this evening that today was World Autism Awareness Day I'll wear blue in honor of The Boog tomorrow and I'll make a point of remembering to do it on the correct day next year.

  3. Megan,
    My cousin posted this on her FB page. I usally don't read a lot of Blogs/Articles that are posted but felt compelled to read yours. I don't have children but have worked with a lot of Austistic children and adolescents that ranged from one end to the other on the spectrum. You did an amazing job writing this. I hope that more people read this and realize that these children, adolescents and adults have so much to offer all of us. They are wonderful and can make you smile in an instant.
    Thank you for writing this and I plan on sharing it as well.
    I truly believe that Rylan is just as blessed to have you as his mother as you are to have him.
    God Bless you.
    Diana T.

  4. Lovely post. Some of it I can relate to as I enter the second year of life as the mom of a preemie with health challenges. But I've also been aware that there is not a stigma attached to preemies- they are, it seems, in fact revered by society as strong, resilient, triumphant miracles. That is sadly not the way many autistic children are described, yet the adjectives seem equally applicable to autistic children (and their parents). Lighting up blue, wearing a ribbon, buying a bracelet, seemingly nonsensical references to bra colors- these types of "awareness raising" have always irritated me. The idea of using social media to make people "aware" of diseases and conditions and causes that are more generally understood seems so self-absorbed- I will "like" a status and show my support; I will be a t-shirt and demonstrate to the world the level of awareness- what does it all really DO though? I enjoyed your musings- you urge people to push past the hype, and though I'm still not sure yet how to turn my awareness into action in this particular instance, I can assure you- the Boog is not a scary little boy to me. Enigmatic, yes; magical, definitely; scary, not a chance.

  5. Thank you all so much for your kind words and thanks to all my readers who commented on Facebook and re-posted this blog. I'm really, really touched by the outpouring of support!

  6. I agree that awareness campaigns, in general, have always confused me a bit. I think it's more of a show of solidarity than about raising awareness. For me, wearing blue on World Autism Awareness Day is a message to other parents of children with autism and autistic adults and children alike saying, "I get you. I know. You're not in this alone," but I agree that it does little to educate the general public about autism. If you don't know it's World Autism Awareness Day, you probably don't even notice that people are wearing blue or have blue lights in their homes. It's also about removing the stigma. There are so many parents who are afraid to tell people their children are autistic. I'm proud to say it and I'll tell anyone who will listen that Ry's autistic and how that makes him truly special.

    This is exactly why I wrote the post. We need to find a way to get the "who" of autism out there, because the "what" varies and reduces highly variable and fascinating individuals to a list of "symptoms". The only way I could think to do that was to blog, haha. Perhaps others will have better ideas, but I write, so I wrote :).

    1. I am the grandmother of an autistic child and I can tell you that everything you said and then some is true. The family and especially, the mother of an autistic child, is a saint and in need of all kind thoughts and prayers. If wearing blue will make things better, then I'll paint myself blue every day.