My story: discovering she had autism was the best diagnosis for Clem Bastow

It took 36 years for Clem Bastow to discover she was none of those things. Her autism diagnosis has changed everything for the better.

To this day, I don’t know why I decided to sneak a glimpse at the phys-ed teacher’s notes in Grade 4. The very notion of a clandestine peek at the teacher’s clipboard was, for a rule-obsessed kid like me, tantamount to breaking into the principal’s office on a Mission: Impossible-style heist to rewrite the school curriculum. And yet, there it was – the purple clipboard with the hastily scribbled notes that would form the basis of our end-of-term reports. It was practically whispering, “READ ME”, and I was Alice in Wonderland.

It was 1991 and I’d just moved from a Catholic primary school in Port Melbourne to the state school a few suburbs over. My old school didn’t even have PE class, much less extensive reports: I just had to know!

So, while our teacher was busy sorting netball bibs, I scanned the page, searching for “Clemmy”... found it! My shoulders fell: the sum total of my phys-ed teacher’s observations of me were the words “inappropriate arm swing”.

The rest of our phys-ed class passed in a blur as I tried to wrap my head around that sentence. Was I not, in fact, the Boonie of the rounders court? I knew I wasn’t particularly good at sport, but I enjoyed it. The sudden realisation that I’d been running around with Kermit arms all this time was shocking. It was just the latest, and certainly not the last, moment that gave me pause as a kid: Hang on a minute, I have a sneaking suspicion

I’m not actually like anybody else around me.

Some 27 years later, I’d receive the diagnosis that confirmed those suspicions: at 36 years of age, I wasn’t just weird (or inappropriate), I was autistic. But in that moment, staring at my teacher’s clipboard, I knew only that I was different.

At home, it was another story. My loving, if somewhat eccentric, family made home the safest place to be as a “weird” kid. There, it didn’t matter if I expressed myself in a jumble of dinosaur facts, song lyrics and quotes from movies and cartoons that I loved. It was only when I stepped outside that the reality of the world would come crashing down upon me.

There was my habit of taking things incredibly literally, like the time Mum told me not to drink the bath water, and I never again filled a water bottle from the bath taps, figuring they must be hooked up to a separate system. It took me 27 years to realise she meant: don’t drink the bath water you are sitting in.

It was also clear that the simple act of socialising was something that came naturally to everyone else, and

I could never understand why my fellow six- or seven-yearolds didn’t want to join in my performance of The Wizard of Oz, as opposed to, say, playing downball. Later in life, the simple act of making friends, or going on dates, would bring on racking anxiety. Throughout school, despite my attempts to make friends (usually by sharing whatever niche interest I was currently obsessing over), I was bullied and frozen out. In adulthood, I was taken advantage of by predatory men whose interest in me I misread as romantic.

I was hypersensitive to changes in temperature and light, and would fly into a raging meltdown if my socks bunched up in my gumboots, my woollen spencer itched at my neck, or if Mum tried to brush my hair. The world felt bewildering and dangerous in a way it didn’t to most of my friends.

Eventually, “inappropriate arm swing” was the least of my worries. Other labels would begin to stick to me – things like “angry”, “selfish”, “weird” and “stupid”. Even when I was deemed “gifted” by my school, doing well in art and English, my shortcomings in other areas (and later, the fact I dropped out of three different university and TAFE courses) made me wonder if all those less complimentary labels were more correct. By the time I received my diagnosis, I was carrying a lifetime’s worth of incorrect labels, each of them adding another weight to my back.

With each passing year, I constructed a sort of armour around myself, squashing down my true (autistic) nature just to get by. Working from home, as a freelance writer, was a way to avoid the vagaries of the office, where the hum of fluorescent lighting and furnacelike thermostat made it difficult to function. I had left the workforce with my tail between my legs, thinking myself a failure for not having been able to “cut it” in the fast-paced world of journalism.

The relief upon receiving my diagnosis – and the confirmation that I wasn’t “weird” or “defective” – was extraordinary. Suddenly, I had a framework to understand my experiences. My childhood “tantrums” were, in fact, meltdowns; unstoppable reactions to sensory overload and anxiety. My habit of reading everything I could about anything that fascinated me was evidence of a special interest. My leg jiggling and finger snapping wasn’t just fidgeting but “stimming”, a way of regulating my emotional and physical state. Even my ability to mimic celebrities and reel off movie quotes had a name: delayed echolalia.

As for “inappropriate arm swing”? Autistic kids often struggle with physical co-ordination, and may have low muscle tone – maybe I was stimming because I enjoyed running! Imagine if someone had not just made a note of my behaviours, but investigated them. How different my life would have been!

My story is not unique. It’s only been in the past decade that clinicians have recognised autism may present very differently in girls and women. Many people’s notion of what autism “looks like” is based on things they’ve seen in popular culture (think Sheldon from The Big Bang Theory, or Dustin Hoffman’s character in Rain Man), so it may not even occur to some women that their challenges and strengths might be rooted in autism. Comedian Hannah Gadsby, who, like me, was diagnosed later in life, put it so well in her stand-up special, Douglas: “My issue was I didn’t understand enough about autism to understand how I could have autism.”

Over the past three years,

I’ve been on a journey of selfdiscovery. Recognising my autism means I am kinder to myself, but also keenly notice the ways in which the world is geared against autistic people. Autistic kids, particularly those who are non-speaking or have complex needs, are subjected to drill-like “therapies” to extinguish their autistic behaviours.

The unemployment rate for autistic Australians is 31.6 per cent, and 54 per cent of autistic Australians have never held paid employment. Many autistic people don’t finish school due to sensory or communication issues, bullying and the school’s failure to meet their needs. Things must change. Autistic people are so rarely afforded the opportunity to tell our own stories; to be considered the true experts in autistic experience. Writing Late Bloomer was an exercise in understanding the past, but it’s also my attempt to change the future: both for me, and for anybody reading it who might be grappling with their own place in the world. Somewhere out there is a little kid who is starting to get the sense that they, too, might have their own version of “inappropriate arm swing”. I hope they read my book and realise they are perfect, just the way they are.

Clem Bastow is a writer, cultural critic and autism advocate. Her memoir, Late Bloomer: How An Autism Diagnosis Changed My Life, is published by Hardie Grant. On sale July 7.