what i wish i’d known
address given at Autistic Women & Girls: Mental Health Symposium in Melbourne on February 23rd, 2019
As I was preparing to speak today, Katie from Yellow Ladybugs asked me to think about the notion of what I wish I’d known when I was younger.
I am one of the growing number of women diagnosed with Autism Spectrum Conditions later in life; my “congratulations” moment came last year, when I was 36. Some people responded like this was something new, but as I and those closest to me knew, I had been Autistic since birth. Like many who receive a diagnosis later on, the news provided me with a filter and a framework within which I could understand almost everything that had happened in my life leading up to that point.
It explained why I could master some complex skills with laser-like focus, my wit and unconventional approach to my writing, my deep empathy, and why I found it so satisfying to stand in the fruit shop patting a watermelon for five minutes straight.
But it also explained 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 nose-picking-to-the-point-of-self-harm. The crushing homesickness that made sleepovers and school camps a fraught experience. The lassez 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 shirked from certain sounds that others couldn’t hear. And the “tantrums”, oh, the tantrums.
Now, as a happy and reasonably confident Autistic woman, I can see that those “tantrums” were, in fact, meltdowns. So, when I think about what I wish I’d known when I was younger, the answer, clear as day, is: I WISH I KNEW I WAS AUTISTIC!
Friends and family members of daughters who they suspect are “on the spectrum” often ask me, “But won’t she be labelled?” It’s true that growing up is difficult for everyone (except for maybe that one school friend of mine who was a ballroom dancing champion), and a label like “Autistic”, “Aspie” or “on the spectrum” might seem scary to consider. But when you’re growing up well aware of the fact that you’re very different from your peers, sometimes a label is the very thing you need. And, there are worse ones.
Some of the “labels” that were applied to me, before we had a framework with which to understand and support my behaviour, included “difficult”, “angry”, “selfish”, “remedial”, “incompetent”, “weird”, and a number of ableist slurs I won’t repeat here. Or, the day I looked at my sports teacher’s notes and discovered that I, until that moment someone who 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 explained something along the lines of “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.
Labels like “dumb” or “incompetent” have a habit of sticking; once we leave school, it may be that nobody calls us those things out loud, but those words burrow down into our minds and memories. I’m now a PhD candidate, having received my masters with a high distinction in 2017. But prior to that, I dropped out of three different university degrees across a decade; there was always a part of me that thought back to school and went “yeah, you’re probably too dumb for uni”. Now, as one of only ten Vice Chancellor’s Scholars at RMIT, I can see that it was precisely because of my unique and Autistic approach to research and writing that my PhD proposal was received so warmly.
Often, when Autistic people “focus on the positives”, we’re accused of a rose-tinted view of the world. Surely, Neurotypical people exclaim, being Autistic is actually terrible news and a tragedy for all involved. And sure, 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 reasonably low support needs. In the privacy of my own room, I am still prone to meltdowns—rest in peace the DVD cover that I couldn’t open, so attacked with a chisel and a 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 Neurotypical people, because I know that, to them, they are utterly abject. But I have truly come to see my Autism as not just the icing on top of some of my triumphs and strengths, but actually key to them: the whole cake.
I’m certainly not alone in this. Autistic women and gender diverse people like Professor Temple Grandin, comedian Hannah Gadsby, and former Olympic swimmer turned writer and artist Casey Legler have all discussed the role their Autistic thinking plays in their work.
All of them, as I have, have found the thing they love—their special interest—and found a way to incorporate it into their working lives. But for those Ladybugs out there who are still five or ten years away from the working world—or for those who, like me, question the neoliberal and capitalist pressure to make everything about “work”—take that special interest and make it a full-time hobby; there is no surer insurance against depression.
For me, one of my most special interests has always been making costumes and props and dressing up. I’ve never been more profoundly depressed than the two or so years within which I told myself, staring down the pressures of Neurotypical expectation of adulthood, that dressing up was “for kids” and I should spend my time and money elsewhere. Now, I “dress up” four or five times a year; a decade ago I discovered the cosplay world and never looked back. I even managed to turn that special interest into paid work, teaching a short course at RMIT in costume fabrication techniques and thermoplastics. Ironically enough, cosplay has also introduced me to many of my Neurodiverse friends. Nerds: who knew?
Without the understanding of my Autistic place in the universe, anxiety and depression were a huge part of my life. That’s not to say that, now I understand my Autism, I am completely free of either, but I know why some traditional Neurotypically-geared approaches to anxiety and depression didn’t work for me.
If we subscribe to the social model of disability, and I think we should, then I often wonder how much of my anxiety and depression was a normative response to existing as Neurodiverse in a Neurotypical world. Do I feel anxious and panicked in the library at university because there’s something wrong with me, or because the carpet is ridiculously patterned, the walls are glass, and the stairs are “floating” steps that have huge gaps in them that make me feel like I’m going to fall through them and die? Am I “incapable” of holding down a “real” job, or is the modern open plan office designed in such a way that it creates sensory overload?
When Autistic people talk about creating a world that is sensory friendly, some Neurotypicals bristle at the notion, like we’re suggesting we want everyone to be wrapped in cotton wool (which I admit would be very comfy).
The irony is, a sensory friendly world—like a more accessible world—is better for everybody, including Neurotypicals. I have worked from home as a freelance journalist for the majority of my adult life, because there, I can control the environment around me. When I briefly worked in the office at a major newspaper, I felt ashamed that I apparently “couldn’t handle” the “fast-paced world” of journalism, and left after six months. Autistic girls and women are world champion shame-feelers.
Now, I know how much the noise and furnace-like thermostat of the open plan office had to do with my reduced capacity to work and create in that environment - and I bet if those features were addressed, the general stress levels of the staff would be greatly lowered. (And god knows those in print media have got enough stress on their plates in this day and age.)
So, now that I know what I know, what wisdom can I impart to fellow Ladybugs and their families, young and old?
If anyone tries to say “Aren’t we all a bit on the spectrum?” to you, shut them down. No, we’re not. The Autism spectrum begins and ends with Autism; it doesn’t start at Neurotypical (even if some of us are very good at pretending to exist in that world). I like to think of it like Pokemon, which is itself a very Autistic metaphor. If we think about individual Autistic traits as Pokemon, your average person might have a few of them, like social anxiety, or sensitivity to light or sound. But in order to officially get “on the spectrum”, you have to, as it were, “catch them all”. And then, depending on where you sit on the spectrum, some of your Pokemon might be more evolved than others. Listen, people, I just really love Pokemon.
Also, reject “functioning labels”. There’s a chequered history of functioning labels that I don’t have time to decry here, but in short, “high functioning” is used to deny support, and “low functioning” is used to deny agency. The Neurotypical world places a high premium on talking as the only form of “communication”. Autistic people know that there are many ways to communicate. There are so-called “non-verbal” Autistic people writing some of the most elegant and emotionally insightful novels and poetry around.
The worst thing about anxiety and negative thinking is how real it feels at the time. That’s especially true in childhood and adolescence. For Ladybugs who are a bit older, you could try my favourite anti-anxiety exercise, “the bin”. Get yourself one of those cute little “bins” from office supply shops; every time you say or think something negative about yourself, write it down, and put it in the “bin”. After a week, you get to take them out and read them. Believe me, you will be roaring with laughter. It’s a great way to realise that sometimes the worst anxious thoughts are just that, thoughts. Also, the worst.
Next, find some “portable” stims to take with you in moments you might feel stressed out. To anybody else, this is just a pen, and this is just a laptop cover. But to those in the know…
I’ve also finally realised how important exercise and activity is for battling depression. Think back to that sports teacher’s notes—”inappropriate arm swing”—and how they ruined my love of ‘organised’ movement for years. When I used to get angry if someone suggested exercise might help my low mood, I now see it was buried trauma about sports class. Try lots of things and see what you like: it might be dancing or yoga, or boxing or running. Equine therapy is wonderful for “Aspergirls”. I discovered weightlifting three years ago and never looked back, and once again, I have met many fellow Autistic people in that world (and we all get very cross when the plates aren’t put back in order).
But the biggest advice I can give to parents of Autistic girls, and to Autistic women young and old, is to embrace Autism and use it to help you find your tribe. When I visit my younger Autistic relatives, we all relish being able to—as I put it—tune into the alien wavelengths, and we monologue about special interests and stim together for hours. When you’re young and you feel like nobody understands you, or even when you’re older and feel that way, there’s nothing like meeting other Autistic people who can say “Yeah, me too!!”.
Yes, when you first receive the news or have your suspicions, the word “Autistic” might stick in your throat. You might tie yourself up in knots trying to describe it any other way: “spectrum-y”, “ASD”, or some other euphemism. But I think the number one way to combat depression and anxiety in girls and women with Autism is to embrace it. So, if you’re like me, and you’re Autistic, I reckon that’s rad. And so do so many other people, so get out there and meet them.