Late Bloomer Page 2
Dad’s mum, Perle – ‘Mumple’ to us – was the local grandparent (Mum’s parents lived in South Australia), a very English matriarch with a habit of marching out of the bathroom stark naked to answer a ringing phone, and who would stay up watching rage until 6 am in case a Midnight Oil song came on. She once tripped and fell on me, and her enormous bull terrier, Jenny, thought it was a game and jumped on top of her. (I thought I was going to die face-down on the scratchy coir carpet of my nightmares.)
My older sister, Blazey, Dad’s daughter, lived in Sydney with her mum and stepdad. The distance added to the degree to which I hero-worshipped her, so much so that, for example, a letter she wrote me about O-week took on the significance of the Rosetta Stone (‘There are lots of clubs with names like The Hamster Appreciation Society, whose activities include bulk masking tape distribution …’). And then there was my younger brother, Atticus, the funniest person on earth; I once returned from the bathroom to discover he’d nailed my breakfast croissant to the ceiling.
We lived in Port Melbourne, back before it became Melbourne’s own Miami Beach. The real Port Melbourne is still there, of course, if you know where to look for it. It’s like that school science experiment where you use a red cellophane filter to reveal secret messages written in different colours. I stand on the shoreline and hold my red cellophane, looking north, and see Dugga Beazley’s fishing boat parked on the corner of Dow Street and Rouse Street. I hold it over The Anchorage apartments and I see the Swallow and Ariell factory, and smell the baking biscuits on the breeze. I hold it over Bay Street and I see Coles New World and Scrooges. I see the old Lagoon factory and its giant oddment jars of Sherbet Bombs for $2. I see Circus Oz trapeze artists on their way home from rehearsal dodging the rat-arsed revellers chundering rivers of green beer in the gutters outside Molly Bloom’s on St Patrick’s Day. Brucey’s giant tin shed. The sky-blue door of the old Port Melbourne Lifesaving Club.
Mum’s parents had expressed their concern in no uncertain terms: in moving to Port Melbourne in the early 1980s, young Helen was absolutely in mortal danger of being killed by the painters and dockers. (The Federated Ship Painters and Dockers Union, that is, not the band, though given they had a song called ‘Die Yuppie Die’, they probably would’ve shanked Mum, too.) Undeterred by the certainty of a violent end, Helen and John moved to a little weatherboard house on the corner of Esplanade East, and I was born not long after, on 21 June 1982. A few years later, we moved to an old pub on Rouse Street opposite the Transport Workers Union HQ.
Our household was filled with music – Tabu Ley Rochereau, Aretha Franklin, Jonathan Richman, Franciscus Henri – and, frequently, also with Mum and Dad’s friends. Dinner parties would stretch long into the night; I have fond memories of wandering, blinking, from my bedroom into the kitchen to witness sights like Dad’s friend Chris dancing to ABBA on the dining table, wearing a wig. For my bedtime stories, I was read The Iliad, David Copperfield, and the real Grimm’s fairy tales.
My early childhood was one of blissful routine. We would go for family dinners at the Wong Shing Kee on Russell Street, where the ancient patriarch greeted customers by intoning ‘Only cash’, and I’d spend the evening tracing patterns in the red flocked wallpaper over a dinner of short soup and Fanta. Afterwards, we’d head over the road for a few rounds of pinball (good hand–eye coordination training), and the drive home would be punctuated by a visit to ‘the fish lighting up’, which was what I called the old Allen’s Sweets ‘skyline spectacular’ neon sign in South Melbourne, because to my mind, the wrapped lolly looked like a fish.
But the most beloved routine of all would come on 24 December each year, when we’d gather in front of the Christmas tree to watch Meet Me In St. Louis. My love of Christmas is a dense potpourri of family memories and pop-cultural references, and sometimes – like so many things in my life – it’s hard to tell where one ends and the other begins. Decorating the Christmas tree was always an exercise in replicating Pluto’s Christmas Tree – the 1952 Disney short that had bewitched my parents and now me – and shoving lights, blown glass baubles and tinsel deep into the branches of the tree to create magical little caves of light and sparkle, just like Mickey’s tree. Mum’s family tradition brought the booming voice of Mario Lanza to the Christmas vernacular (to this day, when I see a particularly traditional Christmas display, I can’t help quoting Lanza: ‘THEN BALTHAZAR SPOKE!’).
After Atticus arrived in 1988 (himself a Christmas gift of sorts, being born on 21 December), a new tradition was established: a gift of a packet of Garden Wafers with a note, hand-drawn by Dad, imploring ‘EAT ME FIRST’; yes, he wanted us to eat the entire packet – all the better to delay the two of us charging into Mum and Dad’s room to yell them awake. And, thanks to repeated hirings of the VHS masterpiece Santa Claus: The Movie, every year I would empty a packet of green glitter over a plate of cucumber peel in order to replicate the ‘reindeer food’ from that film. I still believe in Father Christmas and I will never, ever, give up tinsel and glitter.
For all our struggles – and they have been manifest – we were, as far as I could tell, a perfectly ordinary, slightly eccentric family: loving, reasonably functional, nothing to write home about (other than to sing our praises). Mum and Dad split up when I was twenty-four, but even that experience was, at least compared to some Terrible Family Break-ups I had heard about, not as bad as it could have been.
I mean, it was also clear that we were eccentric by any standard – Dad’s habit of commanding rapt dinner table attention with his ‘poo stories of Africa’, the tales of his tribulations with dysentery and paratyphoid during his youthful travels, ending with him in the London Infectious Diseases Hospital; the constant quoting of lines from movies and plays as conversation; Atti’s archive of recordings of his farts; our collective habit of addressing Puss (cat) and Coco (dog) as though they were people. But at home, I was always in a safe space; perhaps this was why it didn’t become clear to me that I might be significantly different from those around me until I had well and truly left the nest (at twenty-three). At home, my own eccentricities were only ever viewed in the context of everyone else’s.
Even then, there were things that I can now say, looking back, were ‘signs’. Take, for example, literal thinking. As a child (and even, in some cases, to this day), I was incredibly literal. I had learned our phone number as ‘six four five two double-oh one’; when Mumple rang and I picked up the phone, awaiting the caller’s voice, and she asked ‘is that six four five two-thousand and one?’ I replied, sunnily, ‘No!’ and hung up. Similarly, Mum once told me not to drink the bath water. I nodded – the bath taps must be hooked up to a separate water system, I figured – and never again filled a water glass from the bath taps. It took some time (okay, I was twenty-nine) before I realised she meant don’t drink the bath water you are sitting in.
When I wasn’t at home, it was a very different story. From an early age, it had become apparent to me that the simple act of socialising was something that came naturally to most. They implicitly understood the unwritten and unspoken rules of engagement, like ‘don’t try to corral the other seven-year-olds at your birthday party into a rehearsed interpretive performance of The Wizard of Oz when they’d rather just play pass the parcel’. Existence seemed like a riddle I couldn’t decipher. Why was I hyperlexic, miles ahead of my peers in written expression, but unable to make a phone call? How could I quickly learn how to dismantle my computer, or make royal icing, or mimic celebrities’ voices to an uncanny degree, but not understand my times tables? These questions followed me into adulthood. Friends didn’t understand why I didn’t like the single-page orientation of my Kindle. Didn’t anybody else need to read both pages of the book at once, like the robot Johnny 5 from Short Circuit? I had started to get the feeling, by my mid-twenties, that it was both unusual and probably bad to pick my nose to the point of self-harm, and to think nothing of collecting my ‘findings’ underneath my office chair. My fantasies were highly
active, almost places I could visit, but I’d forget the essentials (phone numbers, names, birthdays), as though I’d tuned them out in order to focus on the things that really interested me.
So many things started to flood back during my diagnostic ‘journey’. The way I spent my early school years mimicking cool girls and TV characters in an occasionally vain attempt to make friends. The two years I spent echoing everything I just said under my breath. The social anxiety. The crushing homesickness that made sleepovers and school camps so fraught. The laissez-faire approach to deodorant. The merciless bullying at school. The rampant anxiety and depression. The unfinished university courses. The way I felt confused and dizzy in busily decorated public spaces, and shied away from certain sounds that others couldn’t hear. And the ‘tantrums’. Oh, the tantrums.
It’s nearly impossible for me to recall a time in my life where I didn’t feel, to some degree, alien to the people around me. Sometimes this was a point of pride (teenagers are like that), sometimes it was a wellspring of existential agony, but most of the time it was like an itchy clothing tag or a distant, irritating noise that keeps waking you up at night; eventually, through sheer persistence, it starts to wear you down.
By the time I sought diagnosis, the notion of being Autistic was, to me, something of a last resort. Other suggested diagnoses had been off the mark; at this point, if it wasn’t Autism, I was surely just a lost cause. But that thought – what if I wasn’t? – continued to gnaw at my psyche. In the period between my assessment (15 August 2018) and the follow-up appointment on 3 September, an acquaintance asked me, with a stony expression, what I would do if the clinician told me I wasn’t Autistic. I drew a blank.
Happily, I never had to find the answer: on 3 September, I received my diagnosis. It would go down in the history of great things to have happened on that date, including Richard the Lionheart’s coronation in 1189, the Viking 2 landing at Utopia Planitia on Mars in 1976, and Sir Malcolm Campbell becoming the first person to drive an automobile at over 300 miles per hour in 1935.
It’s hard to qualify just how life-changing it is to receive an Autism diagnosis well into adulthood. Suddenly, it was as though I had a road map, translator and code-breaker all in one. Social interaction wasn’t hard because I was a weirdo or defective; I literally lacked the neurotype for it. I wasn’t ‘losing it’ when I thought the room was too hot, or a noise was too loud, or a texture was revolting. My legendary childhood ‘tantrums’ were, in fact, meltdowns, unstoppable reactions to sensory overload and anxiety. Most strikingly, my toughest challenges and my brightest talents suddenly had a root in something concrete: they weren’t just things that had happened to me, they had happened because of me. This was as thrilling as it was bittersweet. And yet, part of me found being newly diagnosed an incredibly fragile state, like it was a precious object that might slip from my hands at any moment and shatter across the ground beneath me.
As it turned out, there were not many incredulous reactions when I revealed the news of my diagnosis, first to family and then to friends. There were lots of ‘we’ve always suspected as much’, and plenty of ‘welcome to the club’. My extended family contains a number of Autistic people, in both the officially diagnosed sense and the sense of diagnosis being almost a moot point. Academia, it will not surprise you to hear, tends to be overpopulated by Autists.
My immediate post-diagnosis ‘journey’ was similar to many who’ve finally found clarity: I was VERY POSITIVE!!! about it, which was possibly a subconscious way of heading off any naysayers at the pass. I was determined to frame it as a good thing: both the fact of being diagnosed and the fact of being Autistic. (Both of which I still absolutely believe, I must stress.)
A few months after receiving my Autism licence (otherwise known as a diagnostic report), I was asked by Katie Koullas from Yellow Ladybugs, the fantastic Autism advocacy group who work with young Autistic girls and gender diverse kids, to give a speech at a mental health symposium they were running in February 2019. It wasn’t the first time I had been ‘out’, professionally speaking, as Autistic – I’d written a short reflective piece for The Age in late 2018 – but it was my first involvement in an Autistic-led event; my first time with ‘my people’ (explicitly, at least), and my excitement was palpable. I was asked to reflect on what I wish I’d known about myself when I was younger. The answer was, clear as day, I WISH I HAD KNOWN I WAS AUTISTIC. (Which I wrote just like that, in caps and bolded, in my notes for the speech.)
Friends and family of people who they suspect are ‘on the spectrum’ often ask me, ‘But won’t they be labelled?’ It’s true that growing up is difficult for everyone (except for maybe one school friend of mine who was a junior ballroom dancing champion), and a label like ‘Autistic’ or ‘on the spectrum’ might seem scary to consider. But when you’re well aware of the fact that you’re very different from your peers, sometimes a label is the very thing you need. And besides, there are worse ones.
Some of the ‘labels’ that were applied to me included ‘difficult’, ‘angry’, ‘selfish’, ‘remedial’, ‘incompetent’, ‘weird’, and the evergreen Australian playground slur ‘spastic’. One day I looked at my sports teacher’s notes and discovered that I, who until that moment had enjoyed running, had ‘inappropriate arm swing’. Cue: fifteen straight years of avoiding sports and exercise. If someone had taken me aside at ten or fifteen and said something like ‘your brain is so good at some things (like art and performing) that it doesn’t have much room left for others (like maths or socialising)’, a huge weight would have been lifted from my shoulders.
Looking back at the speech I gave that day, I can see I was leaning heavily on the positives, partly in defence against the response I feared from friends and colleagues: oh no, how do you feel, now you know the terrible truth? Often, when Autistic people ‘focus on the positives’, we’re accused of having a rose-tinted view of the world. I won’t lie to you: there are many challenges that I continue to face on a daily basis, even as an Autistic woman with relatively low support needs. In the privacy of my own room, I am still prone to meltdowns – RIP the DVD cover that I couldn’t open, which I attacked with a chisel and hammer shortly before jumping on it like Donald Duck having a spin-out. (It still didn’t open.) There are some behaviours and tics I just don’t talk about with non-Autistic people, because I know that, to them, they are utterly abject.
It’s interesting to return to that speech now, as a snapshot of my headspace in the immediate afterglow of the vindication that diagnosis offered me. I hadn’t yet gone deep into the world of Autistic self-advocacy, and so much of the Autistic experience – although I’d lived it my whole life – felt new to me. It was a constant process of ‘Whoa, is that why I did/said/thought that?!’ I was still learning the ropes.
To discover, or to be reassured, that you are Autistic when you are well into adulthood is to be pitched headfirst into paradoxical thinking. In one breath I longed for the interventions and therapies that I missed, while in the other I wished for all Autistic children to be allowed to simply be, as I was, more or less. This is the positionality of late-life diagnosis: I was simultaneously subject and object, feeling things anew even as I was on the outside, looking in. It took me a long time to stop questioning my own experience
is that really ‘an Autism thing’?
surely everyone goes through that
what if I’m not really Autistic?
and to start trusting that the things I now understood as uniquely Autistic (and even then, unique to my own experience) were, in fact, happening – and had happened my entire life. Even though I was a latecomer, I was still a valid member of the club.
There is a tendency, in some quarters, to characterise accounts of later-life diagnosis as being simply the end result of little more than ‘feeling a bit different’ one’s whole life. Surely, this thinking runs, these people are not truly Autistic – after all, they managed to make it this far without being diagnosed. Many people are diag
nosed later in life precisely because they’ve managed to do such an expert job of masking their Autistic behaviours; for women and gender diverse people, this is often doubly true. What this misunderstanding of late-life diagnosis misses, however, is the fact that diagnosis is usually sought because whatever facade the person has managed to maintain until that point has in fact begun to crumble.
In the time leading up to my diagnosis, my experience of being in the world was becoming increasingly fraught in a way that went beyond merely being a bit awkward at parties: human interaction, and my inability to navigate it, was wearing me down. At the same time, I had taken on so much work – frantically trying to maintain my productivity as a measure of my worth – that I was coming apart at the seams. In November 2016, I experienced such a profound physical and emotional exhaustion that my GP ordered me to stay in bed for a week; even watching TV was deemed too taxing. Now, I understand that as Autistic burnout; at the time, it was a terrifying mystery.
Occasionally I wonder what might have been different had more time passed before deciding to pursue diagnosis – and, thus, learning what aspects of my life might be relevant to the clinician. As it stood, I was aware of some of the emerging thought regarding how Autism can manifest in girls and women, but other aspects of my understanding were based on what I ‘knew’ about the condition. I was only looking for the most obviously ‘Autistic’ behaviours in myself, in order to report them.
I think this is mostly because there’s a part of me that knows how hard I’ve worked (not always consciously) to minimise and avoid so many of what I now recognise to be Autistic behaviours, interests and ways of being; in a way, the mask was still firmly affixed when I stepped into the consulting rooms. It is, of course, a psychologist’s job to be able to see beneath that facade, but when you’re thirty-six they don’t sit you in a room and observe you playing with dolls or model trucks. How many of my truly Autistic behaviours were so innate, hidden or repressed that I wouldn’t even think to mention them? Not long after my diagnosis, I recall seeing the Autistic comedian Hannah Gadsby discussing her own experience, explaining that at home – free of the pressures of the world at large – she ‘wasn’t Autistic’. In a way, my experience was the opposite: I only felt safe to be truly myself in the safety of my own home. If only the clinician could have seen me plummeting into an internet hole, going deep on one of my special interests at the expense of things like rational thought or food. But there was another problem, too: as Gadsby says in her stand-up special, Douglas, ‘My issue was I didn’t understand enough about Autism to understand how I could have Autism.’