The A-Game: a letter for my daughter with autism (who may teach you a thing or two about patience, flexibility and power of diversity of thought).

“Be bold” they said. “Do something that scares you” they said. “Ok” I respond, with shaky legs. Article #1 for LinkedIn. Not the one I thought I’d be writing, but it felt like the RIGHT one. (Step forward, imposter syndrome!)

The 30th July 2018. “Your daughter has autism”. *Punch to the gut*. That probably should have been what I felt but instead, I was relieved.  “You’re relieved your daughter has autism, you’re crazy…she’ll be spinning around, grunting and spitting at kids all her life!?” they’d say to me.  Uhhhh…#judgey #incorrect #AssumeMakesAnAssOutOfYouAndMe #cantbelieveIvejustusedanexpletiveonLinkedIn

Yes I was flipping-well relieved. It helped to me make sense of our world. Ironic really, because those with autism process the world in a different way. What a GIFT.

I was relieved because it explained my 2.5 year old’s sheer terror of the bath, her writhing out of clothes with labels, her laboring cry if her plate wasn’t the right way round, or if her placemat wasn’t exactly parallel to the edge of the table. It explained why she didn’t crack a smile. It explained why she didn’t laugh; instead staring intently at something else in the room. It explained why rocking her to sleep only made the whimpering escalate to a full on bawl. She made sense of the world in a different way. And in that moment, for her to thrive, the stars quite literally had to be aligned. Everything had to be aligned. The mat, her plate, her knife and fork and her reception of the world.

I knew nada. And 3 years on, I still know nada. And unless you are an expert, YOU also are likely to know nada…because even if ‘your wife’s dogs groomer’s cousin’s son’ has autism, you still know nada about autism. Because it’s like saying “I know every person on the planet”. Every person with autism is different…much like every PERSON (full stop!) is different. But also, those people CHANGE! Autistic people change. Neurotypical people change. #shocker #NEWNEWS

For us, in THIS moment it means she no longer shrieks if her mat is the wrong way up or if her perfectly-sharpened crayon is the wrong shade of turquoise. Instead, it’s:

• Her inability to say good morning to her friends at the school gates, waving only with her eyes closed – a movement so small it’s barely discernible.
• The fact she completely disengages at kids’ parties – staring vacantly into a trance-like state, only to talk non-stop for 2 hours after about how much fun she had.
• Then the hiding under the table the day after the party as the sensory overload has sparked a reaction like fireworks going off over Sydney Harbor Bridge.
• The fact she stays on her tiny lady-bird shaped patch on the carpet at school-time even after all the other children have left, because no-one told her she was allowed to move.
• The fact she doesn’t even react after smashing her head on a table; unable to find a way to make sense of her feelings.

But it’s also:

• The unbelievable ability she has to recall every single meal she’s ever had.
• The fact she describes food by the sound they make in her head, and not the taste they have in her mouth.
• The fact sheds taught me to ask for her permission before I kiss her sweet forehead, or hug her tiny body.
• The fact she can do my 8-year old’s spellings without ever having read them.
• Her inquisitive mind; ‘How old is the air?”, “What’s inside paper?”, and “Why don’t the planets fly away if there’s no gravity?”

Who wouldn’t want someone in their lives that can see things from another angle?

I wrote this article because a 5 ? year has taught me patience, flexibility, the power of appreciating everyone for who they are (and a little more about science!) Imagine what you can learn by bringing in diversity of thought into your life.  But I also wrote it because I need her to know never to hide from the qualities she has. She doesn’t grunt. She doesn’t spit. But even if she did, there would be a reason for it that made sense to her. We just need to try and decipher it.

So this, is for ‘her’. Harper. My daughter. The most wonderfully eclectic mix of genetic alterations. Much like we all are. It’s just that hers manifests itself as autism (oh, and a load of other non-typical genetic characteristics such as growth deficiency, hypotonia, hypermobility, underactive thyroid and dysphagia).  

Take only one thing away from this: the power of acceptance, and challenging yourself to ask "why". "Why does someone react in this way? What can I learn from it?"

So this is for Harper (Dids). The girl that who knows The Tiger Who Came to Tea off the top of her head and can do puzzles with the pieces flipped over to the wrong side.