We won't ever have straight lines (and that's OK)

A gentle story (not advice) for parents and whānau of newly diagnosed autistic tamariki 💜

Twelve years ago my awesome daughter was diagnosed as Autistic. The written report clearly stated ‘moderate to severe autism,’ yet I announced to the world via Facebook that her autism was ‘mild,’ and that it wouldn’t change anything.

Reader: It changed everything.

12 years ago, drawing identical squiggles on her leg 😍

Her hair was still a halo of chestnut coloured ringlets, her excitement still shot like lightning bolts out of her fingers and toes when she stimmed, she still loved veraciously her iggle piggle soft toy, and still enjoyed drawing identical squiggles on any surface (including her legs!) like the day before the one when a developmental paediatrician handed us a post it with an Autism website address on it, and sent us back into the world with no clue what it all meant.

It was just a word, after all. A fully loaded word that changed us as a whānau, but more importantly it changed the world around us: the people, the places, the number of welcome mats laid out to tell us whether we could come and go as we pleased.

Many of the smiles we held dear turned into all-knowing smirks, and the people who told us our concerns were ‘silly,’ suddenly unleashed a tsunami of unsolicited advice on us on how we should parent - based on their expert opinions based on watching a documentary, or what they’d heard from their friends-neighbours-step cousin who had a kid exactly the same.

All the buttoned lips soon became unbuttoned, and there was a loud chorus of “Well I didn’t want to say anything earlier, but…”

“Do this, try that, read this - believe me, this is best, it will work, its better than nothing, you won’t regret it, what have you got to lose...” The advice came thick and fast, and it was so much more overwhelming than the ever-increasing pile of correspondence from the ‘specialists.’

The house which was our haven/fortress where everyone feels safe and respected was suddenly invaded by specialists on home visits from every direction. We felt exposed, vulnerable, judged, confused. So many words. The fortified walls you had built from the ground up now had to be built back up, one brick at a time.

Meanwhile, all of the suggestions from the so-called ‘experts’ had began an irreversible process, slowly chipping away at the confidence I had built up over 2 1/2 years experience as a first time mum. All the whispers had become yells that I couldn’t ignore. I started doubting my gut instincts. Thats when things started to get ‘wobbly’ for the first time - because when you have multiple people telling you which way is up, and the many reasons why any other direction is wrong, you lose your ability to think without fear. My (now) old friend ANXIETY made their first appearance around then. It changes your thought process, and makes every single decision throughout your day terrifying.

No more straight lines, only interrupted ones with curves, dips and sharp angles.

I used to be so confident, could answer questions with absolute conviction. My clear voice had become a hesitant whisper.

Everyone suddenly had an opinion, and preferred to talk over rather than to me. I started to realise how frustrating life must be like for Sophia, a quiet and thoughtful young girl trying to make her way in an increasingly hostile and impatient world.

People would say “how are you?” but I could tell that they weren’t really interested. That’s a common experience for all mums, diagnosis or not. People aren’t really interested in them anymore, it was now all about the baby. But this is another step of isolation, when the person doesn’t actually want to know about the baby, they want to know about the Autism. Because it’s interesting to them, it’s something they can park at the end of the conversation, it wasn’t the topic of 2am panic attacks like it was for me.

Sometimes I would feel like it was my ‘job’ to be a Public Service Announcement for Autism. This is what it looks like, no she won’t grow out of it, no we aren’t looking for a cure, no I don’t want to consider bone broth.

I could literally see their faces change when I would tell them anything about our new world. They would smile with their mouth, but their eyes said clearly to me ‘“good luck with that/glad its you and not me.”

So I stopped talking, I’d just revert to “I’m good” when anyone asked how I was. It’s just easier that way. I’d think of my girl and the frustration of having things to say when the world saw her as ‘non-verbal,’ as well. On the inside I’m a blancmange of insecurity and nerves but you don’t need to know that. Don’t mess with the fantasy that I’m a fierce warrior advocate mum, it’s all I’ve got! In time I found other mums in my community with similar experiences who could relate, and I could exhale. We all got each other and that was the soothing balm I needed to move forward.

Perspective is a wonderful thing. At the time it felt so final, like nothing was ever going to get better. All of the labels, all of the advice, all of the false support and none of the good stuff, sticks. You start to believe the hype around the autism label.

It’s a trip alright, Sophia was/is a very patient tour guide and kept us heading in the right direction - despite all the distractions along the way.

Autism is a diagnosis, not a sentence. Yes its life long, but it’s not terminal! Many of the blessings I have received in my life are because of Autism, not despite it. I should really thank Sophia for the amazing gift of being able to listen with more than just my ears. Speak with more than just my mouth. See the world from more than just one angle. Feel with more than just my fingertips. Watching her make sense of the world in her own unique way can be heartbreaking at times, but it is also empowering. I trust my gut so much more now, thanks to Sophia. I have the ability to make decisions again - I acknowledge my straight lines of thought no longer exist, but I can manoeuvre the dips, curves and anxiety way better now.

Watching Sophia grow into an adult has been a wonderful privilege, and a masterclass in living life without the shackles of expectation. She does all the things the ‘experts’ said she would never do, in her own genius way. All the anxiety around doing the right things at the right time for her as a small child, were so unfounded. It is the ultimate example of takiwātanga - in their own time and space.

How many sleepless nights could I have avoided back then by just trusting in Sophia, rather than the countless channels of advice being directed at us?

I wonder how different life would be for a parent who didn’t get exposed to the same arsenal of unsolicited advice at such a vulnerable time in their life. Imagine if parents walked out of a paediatricians office with more than just a post-it note.

Imagine if instead of whispers and yells, we all could speak kindly and without judgement about disability.

We could all save each other a lifetime of unnecessary hurt and anxiety. We won’t ever have straight lines, but we can all help soften the sharp angles and lessen the curves and dips on the journey.

……………….

If you are reading this as a parent of a newly diagnosed autistic child, *deep breaths* I know you have more questions and concerns than there are hours in the day. Trust in your child. They are the same beautiful, wild and zany wee person that existed yesterday, last week and long before the first person mentioned the word autism to you. Trust your gut instinct. Trust the process. You have got this far parenting this unique child, you know them better than any ‘expert.’ Hold on tight, and enjoy the journey.

And always, always, listen to your travel guide 💜