(specialty volcanology for Ph.D.)
I wish that non-autistic people could understand that what we have to say matters more than how it is delivered. I want us to be appreciated for our forthrightness; have it understood that
hidden agendas and malice are not
lurking behind our statements.
These strengths should be celebrated,
not maligned and weaponised against us.
I am a volcanologist by training, an Earth Sciences educator by passion, a writer of hard things needing saying, and a discombobulated mother of two vivacious young girls. I find myself increasingly drawn to writing since receiving my Autism Spectrum Disorder (ASD Level 1; Asperger’s) diagnosis, as it completely changed my perception of self and the world I’ve struggled to navigate for four decades. After reading widely about the entrenched problems with diagnosing Spectrum women and attempting to help my eldest daughter through similar challenges, I’ve chanelled my writing endeavours towards making autistic women more visible in literature and honestly sharing my own experiences. My hope is to see more realistic autistic female representation in popular media and provide other parents tools to help their autistic children thrive.
How can we recognise something intangible without the language to constrain and define it? An individual’s limited worldview blinds them to alternate possible experiences, making it difficult to recognise that which is innate and fundamental to us is actually a curious thing to other people. When I suddenly discovered, on the eve of 40, a vocabulary for things I do and the ways in which I experience the world distinctly from the majority, it was an epiphany. I never imagined that my need to rub fabric to feel calm, my propensity to endlessly replay conversations in my head, or even just the neat trick of teaching myself to read before 4, had interesting-sounding clinical terms. In simply defining these words, I began to understand how markedly different I am.
I always knew I was more than a little “weird.” My older brother and peers made that blatantly clear from as early as I can remember. Report cards and parent-teacher meetings unfailingly revealed that while I was a stellar student, I did not “get along well with others,” lacked social skills, and generally struggled to fit the mould. My third-grade teacher was brutal in her assertion that, “the other students simply do not like you” and insinuated my fourth-grade teacher-to-be did not want me in her classroom because I was “difficult.”
I could read in the comments I was outside the norm, but didn’t understand why or how. I got along fine with adults and was always a great hit at their gatherings in my role as “little professor,” but kids my own age quickly got fed up with me. I was brighter and faster at picking up most concepts than my peers, generally learning things more by osmosis than effort, but social situations always threw me into a state of emotional tumult. Extreme sensitivity, lightning quick temper, and indifference to fitting in made me an easy mark for kids who enjoyed getting a rise out of me. Anything and everything seemed to set me off. Predicting when or why I would burst into tears was anybody’s guess. I spent a lot of time in the school counsellor’s office or lurking in the corners of the library or band room and learned to pretend to be “normal.”
Articles abound on the incredibly high personal cost of masking; my personal experiences mirror what many others have written. I initially experience irritability, irascibility, and fatigue. Without a chance to recharge and rebalance through solitude, movement and special interests, the symptoms quickly morph into raging outbursts, physical maladies, depression, anxiety, insomnia, and general malaise. Unchecked, they spin into suicidal ideation and complete burnout.
This is my pattern. Decades of vicious cycles: expending too much energy handling noises, smells, sounds, lights, interruptions, people, people, people with nowhere to retreat, walk, stretch, and move repeatedly tipping me over the edge, then collapsing into an incoherent puddle of person-ness. Yet I had no idea why this kept occurring; why I couldn’t manage things everyone could without a problem.
I knew I was supposed to be able to go into a mall/shopping centre/grocery store without feeling like my brain was burning and the smells were trying to kill me. I knew I was supposed to be able to deal with things being moved around to different places or packaging changing or different people being in those spaces without wanting to cry. I knew I was supposed to be able to engage in social activities without needing to run away hours before everyone else and curl up in a little hidey-hole of quiet and solitude for hours or days afterward. But I had no idea how to do any of these things.
Therefore, I continued to push myself to do all the “normal” things everyone else was doing without acknowledging the huge toll it was taking on my life. I couldn’t connect the dots between sensory overload or social interactions and meltdowns. I didn’t know anyone else struggled like I did.
Then I had a daughter who was super sensitive. Sounds, lights, smells, people, etc. set her off into screaming, wailing, writhing fits. No one could calm her, get close to her, settle her. I was at my wits end from our first week at home, so I did the only thing I know how to do well: research. I read and read and read everything I could find on sensitive/energetic/spirited children. I talked to health professionals and people with similar children. I watched her carefully to find the triggers and experimented with ways to help her soothe herself or at least communicate what was triggering her in a comprehensible way.
We made progress, but she did not grow out of the “difficult” behaviours that galled me so. I fretted endlessly about her transition into school. I copped the brunt of the “Coke-bottle effect” as her rage and meltdowns became worse and more incoherent as she unloaded after days spent being a model student. On top of this, I had to function in the melee of school drop-off and pick-up: a swarming sea of racing, squealing, bouncing, haphazardly running children, blaring music, school bells, and the chatter of dozens of parents hell-bent on squeezing as many drops of social interaction into their day as those 15 minutes either side of school hours could afford.
Not wanting my child to be a social pariah on my account, I started our schooling adventure full of gusto and dove into the morning/afternoon chit-chat. I generally had no idea what was going on, but tried to smile and focus on the other mums I knew from daycare. People were generally friendly, but I was instantly lost if one of my anchor mums wasn’t around or was already talking to someone. Those few minutes a day turned me into Rage Mommy. I expended all my mental/emotional energy trying to smile, nod, engage “normally” in my sensory nightmare zone and had nothing left for my whizzing, whirling, talkingamillionmilesanhourabouteverythingandnothing-5-year old, let alone her little sister. I snapped or yelled at my kiddos way more times than I care to admit in those first few months of school.
Then one night, my husband cautiously asked me if I'd ever considered whether I might have Asperger’s…
It wasn’t the first time someone raised the topic with me, but I honestly didn’t know anything about it. He directed me to an article he’d heard about and thought sounded very familiar. I read it and the pennies started dropping. Left, right, and centre I started finding confirmation of this identity for both myself and my daughter: screening questionnaires, online tests, blogs, books, counsellors, friends with ASD, friends with children on the spectrum, etc. Everything pointed to the same conclusion.
As soon as I accepted this new paradigm, I felt freed from my self- and societally-imposed need to mask. Fuck it, I thought, this is exhausting and really not doing me or anyone close to me any good. I stopped trying to socialise at pickup and drop-off (avoiding it altogether if possible). I donned my sensory armour as much as possible throughout the day to conserve energy for my family. I stopped worrying about making eye contact when talking to people and stopped trying to figure out socially appropriate ways to interact with strangers. I stopped beating myself up for not wanting to go anywhere loud, crowded, or too bright/scented and my husband tried to accept this and help me avoid it or provide space to repair after unavoidable over stimulating experiences.
Taking off my mask was the best mental health move I’ve ever made. It was a beautiful thing to experience as I emerged from my tight little chrysalis to begin flapping my nascent colourful wings. Seeing my experience of self-discovery, acceptance and relaxing into my own differently-wired world reflected in the words of others is always an incredibly affirming experience. I recognise now how many of my life’s imbalances result from attempting to behave within the limits of neurological normalcy. The exhaustion and eventual burn-out is real. I continually try to better understand each of these traits within myself to improve my functioning in the world, create more balance within myself and my family, and help my daughter avoid the pitfalls presented by life as an Aspiegirl in a neurotypical (NT) world.
I am filled with gratitude to all those brave enough to share their stories and hope mine will help someone else. People are often incredulous that anyone could go through half a lifetime before discovering their Autistic identity, but it is an all-too-common story among Spectrum women, especially those of us with particularly high intellects. My tale of following an academic path, wherein my tightly circumscribed interests and intense focus on particular topics would be lauded instead of derided, is fairly typical. The role of “sage on the stage” suits many autists very well, as Hannah Gadsby so eloquently (and hilariously) describes in her stand-up show Douglas. It is natural for many of us to make one-way transmissions of information we find fascinating, even before large groups, because we can prepare our words carefully beforehand and there is little opportunity for anyone to unexpectedly change the script on us. This is not the case in social settings, wherein NTs expect a particular cadence of back-and-forth exchange of call and response coupled with body language and facial expressions that do not generally come naturally to those on the spectrum.
My differences were most pronounced before I entered the microcosm of university at 18 and after I left on maternity leave at 34. So, while I was by no means thriving in early adulthood (dropping out of my first university to spend three months in bed with severe depression, psychologically abusive relationships, etc.), I wasn’t an extreme outlier. It was fairly easy to fumble along copying what other people were doing or simply say I had too much work to do to avoid social situations. I looked industrious and dedicated to my work, not “freakish.” But when I tried to connect with other mothers outside of academia, I started drowning.
Motherhood and trauma are two common triggers for women to finally be diagnosed with ASD later in life. I “won the lottery” getting hit with both on the same day as my daughter and I both brushed the cloth of Death’s robes within the hour of her birth. They say no one is truly prepared for motherhood, but my situation was well outside the norm. I had severe PTSD, postnatal depression, no family to lean on, no mothers’ group, only one mom friend, and a husband who was travelling 2-3 weeks each month. I was quite literally on my own with a baby who would only sleep strapped to my chest in 45-minute stints for a year. Connecting with others under these conditions would have been challenging for most people, but sensory overload and social anxiety created total isolation.
While some Spectrum women find their true calling in motherhood, for others it is a daunting endeavour. My entire identity was wrapped up in academics and that has been stripped back to a few bare threads I continue to cling to. The constant noise and presence of others, the inability to focus on work for days on end, the lack of time to follow streams of consciousness down research rabbit holes, continually leave me feeling bereft, mourning the me I lost. I am often harshly judged for enjoying travelling away from my children for work and deemed “uncaring” or “unsympathetic” in my responses to their daily trials and tribulations, although neither is true. I simply express my care and concern for my children in my own ways.
My greatest wish is for NTs to understand that autistic people very rarely have hidden agendas and being blunt or uninterested in idle chatter does not mean we’re rude. There is beauty in sincerity and silence. They would do well to appreciate this more.