April is Autism Awareness month and, with two kids on the spectrum, we have definitely become more aware of autism in the past several years. Like learning more about almost anything, it didn't take long for me to realize how little I actually knew. And as we've lived with the diagnosis it's become clear that most of the people we encounter are just as clueless as we were.
Recently a friend's child was also diagnosed. I spoke with her after the evaluation and I remembered acutely my own feelings after Ellie was diagnosed: like I was suddenly walking around underwater. Nothing had changed--I was still me, and Ellie was still the same little girl she was before the Big A was attached to her -- but everything was different. It was hard to breath. To talk to people. To say the words in my head, never mind out-loud to others: Ellie has Autism. Ellie is autistic. I had to roll it around on my tongue over and over and over. Get used to the taste and feel of it - sharp and bitter, shapeless and yet pointed.
I thought I was ready to hear what they had to say, but in my heart I wasn't. I was still in denial. And no matter how gently they tried to deliver the blow, it couldn't help but knock me off my feet. Because I thought Autism was something else. I thought that Ellie couldn't be autistic because she was so happy. She couldn't be autistic because she was so attached to me and so content to be held and cuddled. She couldn't be autistic because she seemed so normal (whatever that means.) Because she was so smart, and so good at some things. Because she laughed hysterically when her siblings chased each other around the house and climbed her father to be tossed in the air. She was so strong, so physical, so intense. She was just too focused on other things to bother speaking. She was just too busy playing to pay attention when I called her. She just flapped her arms like that because she was excited. She was just independent. Right? All I saw was a sweet, happy little girl and the things I didn't see? Well, I just didn't see them until someone pointed them out to me.
What I should have seen were the things that were missing and the things that were off. I should have noticed that she didn't wave. I should have noticed that she didn't point with her finger to show me things. I should have noticed that not only didn't she talk, but she didn't understand, either. She didn't follow directions. She made eye contact with me but not most other people. She didn't acknowledge people who came to the house. She didn't care about kids her age. She didn't usually look at my face to share an experience or to see how I was reacting. She didn't smile at ladies in the supermarket when they talked to her. In fact, she usually ignored them. She often treated me like an instrument - she would put my hand on things she wanted opened, use my finger to point to things she wanted named, pull me to a problem she wanted solved so that I could figure it out for her, use my hand to draw pictures, letters, or numbers on her Magnadoodle. She preferred to watch balls roll or the spinning wheels on her toy train than to play pretend. She didn't mimic or imitate the things we did. She never asked for a drink or a snack or a toy - she just cried and let me figure it out. I should have seen these things as red flags, but I didn't.
And as I began to really see it all it suddenly seemed so obvious that I couldn't believe no one had told me earlier! I couldn't believe I hadn't seen it myself, except that I had been so afraid of the A word. I had seen the videos, the specials, and read the articles. My heart had broken over and over for these parents whose children retreated into themselves and became distant enigmas. All those blank, staring faces and silent voices, or the rocking bodies and shrieking lungs: all I knew of Autism was this, and it was terrifying.
Only that is not the only face of Autism. This is Autism, too. This happy girl who sings me awake in the morning is autistic. This girl who loves animals and snuggling and tickle-fests? The one who sits at the table each night smiling at her family and calling us by name, trying to tell us about her favorite episode of The Wonder Pets or a song at school? This girl who is teaching herself to read, who loves to paint and sing, who pulls my face to hers for long kisses and tickles me if she thinks I'm sad? And then there's her sister with Asperger's who can charm you to bits and probably teach you something, too. This, too, is Autism, and it looks nothing like what we thought.
We are lucky. Autism can go either way. But because it can be so many things, because it has so many faces, we need to spread real awareness. When I tell you my daughters are autistic and you are surprised, look again. Think again. Look at their lovely faces, listen to their voices, watch them move, and add them to your inventory of what Autism looks like to you. It does not always look like you imagined, and it is all around you.
This is beautiful. It fully describes my initial reaction when my cousin's son was diagnosed (he's 11 now). He was so happy and he made eye contact! I was convinced they were wrong too. I think you should submit this as an Op Ed piece to a major newspaper. MORE people need to read this.
Posted by: Ronke | April 03, 2011 at 02:01 PM