Saturday is World Autism Awareness Day, so I wanted to share a few simple notes from my personal relationship with autism.
My daughter has autism.
My daughter is awesome.
She is not sick.
She is not sick.
She is incredibly strong.
She, and her parents, don’t “suffer from autism”, but we do “suffer” – if you will – from being perpetually misunderstood by others.
And that stresses us out.
We don’t like stress.
People tell my daughter they understand Asperger’s, but they usually don’t, as actions scream louder than words.
That makes us work even harder to hone our message about it.
Wednesday night is for pasta night, and no matter which restaurant you try to bribe my daughter to go to, it won’t work. It’s all about the pasta. It’s all about this thing called “routine”. When the restaurant rearranges the placement of the cheese, fruit and vegetables in her salad, she notices, and she points it out. She sees a movie once and has it memorized. And never, ever, ask her to wear anything with a button on it.
Autism is “high functioning” in our house, which means it is invisible to most people. Our story differs from those who will never talk, and never be able to take care of themselves, which means our perspective differs, as well. It’s important to note that autism is a spectrum. And although our stories are similar, no two are exactly the same.
So, please, don’t paint us all with one big blue brushstroke.
I could go on and on about it here, but I won’t. (Besides, if you read the book, you know a lot of our story, anyway.) Plus, time flies, my kid keeps growing up so fast that adulthood is a mere blink away, and if I, or anyone else, only see her as “a high functioning autistic”, what good have we done? What have we achieved? We need to see her beyond her label, to the gifted, unique person inside, who offers so much to this world. And she does have quite a bit to offer, which will only make this a better place for us all.
Sure, she has autism.
And I have asthma.
And some people have heart disease.
And others have trouble moving arms and legs, due to MS.
But there is more to us all than any one given aspect. I’d hate to have people only approach me in light of my asthma.
Unfortunately, we aren’t all aware. We don’t all have knowledge of autism spectrum disorders, and some of us will never bother to achieve it. In fact, some will loudly demand cures for those on the high functioning end of the spectrum, when a cure really doesn’t seem necessary. If anything, my daughter, and those like her, teach me more than I ever could imagine about life, the world, and myself, even, and that is a GOOD thing.
And that is all due to this thing called “autism”.
At my first book singing, a reader asked me if I thought I had Asperger’s (her daughter has it, and the conference had her wondering the same about herself.) Honestly, I don’t have the answer for that. But I can definitely relate to my daughter, and even Temple Grandin, at times. I do think in pictures. If I do have it, would I want people constantly campaigning to “fix” me? I know all that talk makes my daughter feel poorly about herself at times.
So this weekend, when you take a few moments to think about autism, remember that we are all different, and although a cure is very welcome for some and even necessary, for others of us, all we want is understanding and acceptance. And maybe, even, your friendship.
Don't you want the same?