Archives for April 2009

While some may see Cordy at her worst – in a full-out, thrashing, crying meltdown – most now see her in her friendly, happy state: a hyper, smiling four year old, bounding around as if the world was hers alone. A year and a half of therapies have done an amazing job at calming her sensory sensitivities, helping her with coping skills, and teaching her proper social interaction.

And for those who only see her at her best, I often hear the same refrain: “She doesn’t seem like she has autism.”

I understand that it is often said as a compliment. They are trying to say that in the five or ten minutes they’ve observed her, they haven’t seen any signs of a child with any kind of developmental issues. I agree – Cordy has worked so hard to recognize other kids, even asking them to play sometimes.

But now and then, some people go a little too far in their praise. It generally goes something like this: “How did you find out she has autism? Did you actually get a diagnosis? Are you sure?”

Like I’m making this up or something?

Or this: “Autism is such an over-diagnosed condition. Look at her – she’s fine. What kid doesn’t have tantrums or irrational fears? And some 4 year olds aren’t potty trained yet. Just because she’s not a genius doesn’t mean she has autism.”

Ouch.

The truth is, Cordy doesn’t have a medical diagnosis yet, only an educational “classification”. The difference really doesn’t matter at this age. However, any funding for her therapy ends at 6 years old unless she has a medical diagnosis, and so her case worker has set up an appointment with a group of experts to evaluate Cordy in early May.

Because of what people have said to me, I’ve started to wonder if she will even be given a diagnosis. I mean, I’d love to hear that my child is perfectly typical in every way – forget genius, I’d be thrilled to hear average at this point – even if it meant I looked silly for thinking she had some condition that she doesn’t.

But while people may think Cordy acts “normal” (whatever normal may be), they aren’t around her for more than an hour. They don’t notice that over half of what she says is a phrase she’s heard from TV or other people, and that her responses don’t always match what was said to her. They don’t see our behind-the-scenes work. We do a lot of prep before we leave the house, making sure she knows what to expect ahead of time to prevent any surprises and avoid sensory triggers that could lead to a meltdown. And they don’t see how hard she works in her classroom to retrain her entire thought process.

I asked her teacher if I should expect the evaluation to end without a diagnosis. After all, Cordy is the only kid with developmental issues that I’ve ever had, so maybe I’m seeing something that isn’t there. She is certain Cordy will still be diagnosed on the spectrum. Her case worker agrees.

It does feel ridiculous to actually hope for a diagnosis so that her therapy can continue into her school years. But I want her to have every tool possible for a successful future.

I fully expected to have an oddball child when I became a mom. After all, I was the oddball when I was little – smart and teased mercilessly for it. Gifted I was prepared for. Special-needs I was not prepared for. I was prepared for a battle of wits at every turn. I was not prepared for the patience I’d need to talk with a child who can’t read facial expressions, emotions or social cues.

Earlier today I found an excellent post, Ten Things Every Child With Autism Wishes You Knew, and as I read it, my eyes filled with tears. It reminded me to be patient and not expect perfection from Cordy, because no child fits all of the expectations of parents. Just because she’s different doesn’t mean she can’t shine using the strengths she possesses. And the post is an excellent resource for those who may be a little uncertain or even afraid about finding out their child has autism.

When I am once again told “She doesn’t act like she has autism” (because it will be said again), I’ll be able to smile and reply that autism is only one part of who she is, and her strengths outshine her limitations.