“Oh, but you don’t look autistic. You must be very high-functioning!”
Those dreaded words.
From well-meaning strangers to my GP, this is almost universally the response I get when I tell people I’m autistic. I can tell that it’s meant as a compliment, but to so many autistic people and autistic women in particular, this seemingly reassuring comment is not only baffling (I wasn’t aware that autism had a “look”?), but also quite triggering.
Let me explain why.
We’re all far more used to wearing masks than we’d like to be these days. A year into the pandemic, people still complain about how scratchy and uncomfortable they are, and they’re right. I think we all miss being able to use our faces to emote and show people who we really are. But imagine if we were never allowed to take these masks off, how suffocating that would be? For many autistic people in today’s world, this is an everyday reality.
When you look at me, what you see is only a tiny microcosm of a vast, complex, but essentially wonderful inner world which despite appearances, finds itself at odds with the loud, jarring world in which you and I physically exist.
What you don’t see is my granular study of people’s body language, witticisms and reactions that has led me to perform neuronormative communication so convincingly. Nor do you see the rigmarole of mental preparation often necessary for me to go to a social event. I do my dance, laugh at jokes I don’t always get, disguise my pounding headache and growing discomfort with the venue’s noise levels and like a vaudeville performer, collapse comically out of sheer exhaustion the second the curtain drops. Rinse and repeat.
It isn’t always like that, but when you do anything for long enough, you can make it look easy. That doesn’t mean that it is, in fact, easy – something I saw for myself quite early in life.
Almost as soon as I was born, my mother could see there was something was different about me. I was doing all the usual toddler things – learning to walk, learning to talk – but grasping them earlier than expected. I quickly gained a large vocabulary and spoke almost like an adult by the time I started primary school. I could memorise whole VHS tapes’ worth of films after a handful of viewings and recite them verbatim, starting again from scratch if I was interrupted (much to my family’s chagrin!). However, it was clear that my sensory reality was causing me great distress.
My mother tells me stories of how detangling my hair in the bath while I screamed, feeling as though each individual hair were being plucked from my scalp. The sound of passing traffic on the street was (and still is without the much-needed aid of music from my earphones) like exploding grenades to me and my mother couldn’t take me into shops as the low hum of the freezers, almost imperceptible to everyone else, would send me into what she thought was a “tantrum” at the time, but would later find out was a reaction to sensory overload.
Diagnosis and Beyond
I was lucky enough to have a mother who wanted to understand me rather than change me, which led to my being diagnosed with Asperger Syndrome at the age of six. This was my gateway to incredibly beneficial resource classes and social skills training where I started to learn what was intuitive to others, from understanding figures of speech to getting a better grasp of conversational turn-taking.
I often wonder why my neurodivergence was picked up on at such an early age while so many other women slipped through the cracks and didn’t receive a diagnosis until adulthood. Was it because I was assessed before gender norms had had the chance to become ingrained in me, telling me that “good girls” are quiet and don’t cause a scene? Was it because I was an oldest child and therefore had my mother’s undivided attention for the first four years of my life? I don’t quite know, to be honest, but I’ll always be grateful to my mother for fighting my corner and getting me the support I needed.
While my sensory differences became a lot easier to deal with in the years following my diagnosis, social interactions and making friends remained a minefield. The bedrock of most friendships is shared interests, but how does an 8-year-old who loves forensic science and coin collecting but has zero interest in conventional play find common ground with her peers? At school, I was obedient and followed everything to the letter, never lashing out or answering back to my teachers. And that, ironically, was precisely the problem: I was a quiet, straight-A student who didn’t pose a disciplinary threat to the school, so my social difficulties went virtually unnoticed. It seemed incredibly unjust to me that connecting with people remained so difficult for me. I knew I’d be a good, loyal friend and my social skills had made extraordinary progress since my diagnosis – they should have met me when I was 6, speaking with no filter and monologuing endlessly whenever the mood took me!
However, despite my best efforts to mould myself to fit in with neurotypicals, it felt like nothing I could do was ever going to be enough. Secondary school in particular was an incredibly lonely time for me and bullying – mostly driven by girls who took exception to my academic interests and unusual fashion sense – debilitated my spirits so profoundly that I dropped out of school. Once my mental health had recovered, I did eventually decide to return to education, albeit to a different school, and that made all the difference. For the first time, I felt I was in a community that wasn’t hostile to difference and valued me for being my shy, eccentric self.
The me who wears baggy clothes with mismatched colours and outfits combining every season. The me who gets exhausted in crowded rooms as I strain to filter out the person I’m talking to from the many conversations happening around me. The me who could deliver a 2-hour lecture on the ‘60s or the discography of Queen (the band, I mean – as far as I’m aware, the British monarch hasn’t dropped an album just yet), but prefers to sit back and quietly listen in a casual conversation. The me who can’t always tell when someone is being sincere, but despite everything, still ultimately believes in the fundamental good in people. I started to feel less guilty about who I was and gradually began the process of debunking my most deeply-entrenched myth: that my autism was what made me so hard to like. I was me, Mel 1.0, default settings, and that was new. It was like I’d been seen for the first time and when you have this most basic ingredient, everything else has the space it needs to fall into place without very much effort.
Finding a Neurotribe
I continued this journey throughout college as I began to read up on autism and get even more excited about embracing my neurodiversity. Seeing a brain scan belonging to Dr Temple Grandin, a fellow autistic woman, was a seminal moment for me. Unlike Dr Grandin, I’m not a savant, but I found myself relating to aspects of how she sees the world and there was something about seeing not just the stem, but almost her entire brain light up like Joseph’s Technicolour Dreamcoat that made me well up with emotion and think, perhaps for the first time: “Neurodiversity is beautiful.”
While the fact that I feel everything so deeply – physically and emotionally, the good and the bad – is perhaps my greatest weakness, this discovery journey I’d embarked on led me to realise that it is also without question my greatest strength. For example, I also belong to another branch of neurodiversity called synaesthesia, a condition thought to be more common both among women and among autistic people. This means that I perceive certain sights, sounds or smells as having additional sensory attributes that most other people don’t experience. For example, I experience certain colours as having “tastes” and I see numbers as varying degrees of “cold”, “cool”, “warm” and “hot” right across the spectrum of temperature. These associations are completely arbitrary and don’t even follow a logical pattern, and yet they are as intuitive to me as swimming is to a fish.
For this reason, when I started learning the piano at 7 years old, I convinced my teacher to let me assign numbers to each note rather than the traditional letters as this helped me “feel” the music much better and give the dynamics and expression of the pieces I learned more colour as I progressed to more textured pieces. Even when I listen to music casually, I can hear – and feel – the ebb and flow of warmth and coolness as the notes spar with each other and dance around the fretboard of sonic possibility, never settling on a final resolution until that final cadence rings out. This is why music always has been and always will be my ultimate “stim”, a source of unadulterated joy that has followed me wherever I go in life.
It sounds corny, but this whole time, while I was looking to the outside world for validation as so many women are unfortunately socially conditioned to do, I didn’t realise that the only friend I ever needed to win over was myself. In fact, the more I reflect on the 18 years since my diagnosis, the more I realise that I was never actually unhappy with how my brain worked – I was just unhappy with what I was expected to be able to do. As Einstein allegedly once said, “Everybody is a genius, but if you judge a fish by its ability to climb a tree, it will live its whole life thinking it is stupid”.
Autism (Self) Acceptance
In the same way you wouldn’t leave a wheelchair user at the foot of a staircase and tell them to climb, autistic people shouldn’t have to wage war with their very identity just to be accepted by society. And most of all, autistic women shouldn’t have to be at breaking point before they finally receive a diagnosis, and this is why attitudes towards autistic women need to change. The more we work towards ending this culture of internalisation and believing women when they say they experience the world in this way, the closer we will get to dismantling the idea of autism as a homogenously male, child-centric identity.
Being a “minority within a minority” when it comes to diagnosis, autistic women still struggle to be seen and heard. This is why female autistic role models and activists are and will continue to be pivotal in affecting this change. In the same way Temple Grandin helped me understand my neurodiversity as something beautiful, I hope that the most recent cohort of “out and proud” autistic women such as Anne Hegerty (of ‘The Chase’ and ‘I’m a Celeb fame!), comedian Hannah Gadsby and perhaps most famously, Greta Thunberg will inspire even more autistic girls and women to wear their “neurodiverse” label with pride. These brilliant, trailblazing women stand as powerful testimony to the reality that “autism as disability” is nothing more than a social construct and a product of inaccessible environments, not of “broken” people.
I know now that there is no reason whatsoever to fear being my authentic self, idiosyncrasies and all. Having said that, I’ve been camouflaging the things that mark me as different for so long that I’m still not entirely sure who exactly my unmasked self is. And that’s okay, because you know what? I’m well on my way to finding that out.