Labels

My daughter has autism.

There. I said it. More specifically she has Pervasive Developmental Disorder-Not Otherwise Specified or PDD-NOS.  It can also be called high functioning autism. I hate saying it; not because I hate autism nor because I think we’re too good for autism and not even because I hate that one of my children has a “disorder.”  I just hate labels.  I feel like they can be so confining, so limiting.  I worry that the label will hinder my daughter.  I worry that she will be defined as the girl with autism instead of the vibrant girl that she is.  I worry that she will be judged by her disabilities rather than her capabilities.  Admittedly, labels can serve a useful purpose.  One word or phrase can communicate a host of ideas and images and it can save you a lot of breath.  But that’s the danger. What do you think of when someone says autism?  Do you think of the anti-social boy who hardly speaks, prefers to be alone, memorizes lists of facts, and has aggressive outbursts?  That’s not my daughter, but they share the same label.  Fortunately, autism is also defined as a spectrum and there is room for lots of variety on a spectrum.

So how would I describe my daughter? 

The 10 year old girl who is active and talkative and curious. The girl who loves pink and animals and baby dolls. The girl who loves to play house over and over again.  The girl who is the oldest and tallest of four kids: two boys and two girls.  The girl who loves to read or should I say is obsessed with reading? The girl who is fascinated by volcanoes and afraid of thunderstorms.  The girl who can’t be bothered by trivial things like covering up after a bath, or combing her hair, or having matching clothes; she has better things to do.  The girl who is left-handed and has an awkward four fingered pencil grip and struggles with handwriting, yet loves to write. The girl who can’t sit still and has energy pouring out through her fingertips and toes.  The girl whose best friends include two, four-year old girls.  The girl who will talk to anybody about anything.  The girl who loves Justin Bieber. The girl who wants to pet your dog.  The girl who adores babies and will think of any way to be near one.  The girl who can fall off her bike, hit her head, and stand up, and say she’s fine. The girl who likes to play on the computer and likes to type. The girl who is fiercely independent.  The girl who wants her own way.  The girl who has no problem sitting down and screaming in the middle of the library. The girl who will say that she hates you in one moment and then can apologize and hug you the next. The girl who can’t tie her shoes but can make dinner and wash the dishes.  The girl who has braces and a retainer; she’ll tell you all about it.  The girl who struggles with math.  The girl who likes to hug. The girl who has trouble keeping her thoughts straight.  The girl who interrupts and insists on saying what’s on her mind.  The girl who has sensitive hearing and sleeps with white noise to drown out the “sounds.” The girl who runs outside in the snow with no shoes on and no coat.  The girl who likes to swim. The girl who likes to ride horses.  The girl who likes to go camping, as long as there are no thunderstorms.  The girl who gets frustrated and then yells or cries. The girl who likes to know where we’re going and what we’re doing.  The girl who has an amazing memory.  The girl who chews on erasers.  The girl who has difficulty following directions.  The girl who taught herself to ride a two wheel bike. The girl who has many best friends yet she is nobody’s best friend. The girl I worry about.  The girl I love. The girl who has autism. My daughter.