Autism diagnosis: one mother's story

The writer with her daughter and husband.
The writer with her daughter and husband. Photo: Supplied

"We think she needs to see a paediatrician", said the school counsellor, not really wanting to make eye contact. They're not words that a parent ever wants to hear and I'd wager not ones that school staff want to say. But there we were.

After months of problems with our little girl settling into prep, we'd arrived here in the school counsellors office. The issues were wide and varied; a long list of infractions printed out in black and white was sitting on top of her folder, as if she might need to remind us at any point why we were there by repeating them back to us.

She shuffled in her seat as she handed over a card, scribbled down some notes and then it was over. Well, for her anyway. For us, it was only the beginning.

Over the next month, time slows as we watch and wait. Wait for the appointment and watch for something, anything, that would tell us what was going on. With no clues as to what was coming next, everything took on too much meaning; our senses heightened, every moment scrutinised.

"I'm pretty sure she is on the Autism Spectrum" says the paediatrician when we finally make it to the appointment. She peers over her glasses, holding my eye with her gaze, as if to make sure I understand. I don't. But the appointment is over and it's time to go.

Suddenly the days speed up, each one filled with appointments, specialists, therapists, forms and questions. We repeat the same story over and over again, responding to the same questions, yet still having no answers for ourselves.

At first we can't see past it. This new big thing, this label that has rudely attached itself to our little girl. At five, she should be described as happy and blond and liking ponies, not Autistic. Surely there's some mistake.

These thoughts consume my every waking moment. And there's lots of them, because sleep suddenly seems ridiculous. Like something from another world, a time gone by.

Grief comes like a wave, overwhelming and self indulgent. I cry for all the things she'll miss out on, for sleep, for the unknown, and most of all, for the times I know I won't be able to make the world right for her. Sometimes I cry for the child I thought we had.

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The label obscures everything; it's like watching a constant loop of a foreign film with no subtitles. We have no choice but to learn the language and immerse ourselves into the world of Autism.

We read towering piles of books, we ask all the stupid questions, we speak to parents who have gone before us and to adults on the Spectrum. We start to understand.

All the little random quirky things that on their own, were random and quirky, however when they're all added together, it starts to tell a different story.

Some of that story is absolutely about a blond little girl who likes ponies, but it also speaks of a girl who is completely overwhelmed; her reaction to lights, sounds, touch and taste all take different meanings.

Her escape into dark cupboards and under beds, her need to line up all her toys and repeat the same words over and over again starts to make more sense.

The wave of grief slowly recedes. The label starts to shrink. Or maybe it just merges into our new world, and becomes our new normal. 

Eventually our little girl comes back into view. She's still the amazing little girl she always was; funny, bright and pony loving. It turns out she was always there.

But we see her with slightly different eyes now; ones filled with respect and pride for the way she integrates into the world around her, despite how confusing and exhausting it is for her.

Five years later and we are fluent in the language of Autism.

More importantly, she's no longer the little girl who cries every day on the way to school, or runs away at three in the morning, or lashes out when the world is just too much.

Therapy has given her the confidence and skills to connect with the world around her, and taught us how to connect with her. We're rewarded with more; more hugs, more words, more laughs. The good days are sweeter because they are hard won.

There will always be challenges, but we now have the tools and a team to face these challenges head on.

While we never wanted to hear those words that started our journey, no parent ever would, but we now know it was for the best.  It opened the door to that new world and gave us the skills to be the best parents that we can possibly be.

The label is no longer there. Actually that's not true. It's there just like the other descriptors; blond, happy, loves ponies and has Autism. An important part of her story, of our story, but it's not the whole narrative.

She shines in her own light now. 

Thursday April 2nd is World Autism Awareness Day.

Renee probably has too many shoes, spends too much time online and is passionate about good grammar. She's also a proud mum to Poss, who happens to have Autism. By day she works in a corporate job, and by night she blogs from the edges of the Spectrum. You can find her here: www.aboutabugg.com