Intro: Alice
I’ve been feeling a bit like Alice lately, having just awoken from a very curious dream. I’ve always viewed ‘Alice’s Adventures in Wonderland’ as an allegory for the magic of childhood, with the ‘waking up’ being the moment that the dream of childhood ends and the reality of adulthood begins. I felt an affinity with this story because while everyone around me seemed to be eagerly embracing their arrival into adulthood, I did not want to grow up, nor did I have any clue how. The adult world was absolutely terrifying in my eyes and frowned upon clinging to childish things. But now I read Alice’s adventures with an added meaning. Through this new lens, the adventures in Alice’s dream are no longer whimsical, but overwhelming and confusing. The English language feels oddly foreign in this upside down world Alice has stumbled upon, more like a second language than a first, and though she tries her best to initiate friendly encounters throughout her adventures, the other characters seem to consistently misunderstand her - despite her increasingly frustrated efforts to explain herself. When the caterpillar asks her to identify herself, she can’t quite figure out the answer to who she is because she seems to change as frequently as her environment does. In Wonderland nothing makes sense, and neither did my experience of the world until I found myself waking from the dream and discovering the fully formed identity I had been trying to piece together for so long.
Too Quiet
“Kristy is a very quiet little girl…”
“…very reserved…”
“…reluctant to share thoughts…”
“…has difficulty speaking to adults.”
“You don’t talk much, do you?”
“You never say anything!”
I very quickly grew to dread the inevitability of comments like these. They were littered throughout my school reports and people would prod me with them in social interactions from childhood all the way through to adulthood. I never understood how I was supposed to respond to someone pointing out my apparent abnormality in the middle of a conversation, but it felt cruel and it caused me a lot of internalized shame and self-hatred. What seemed to come naturally and intuitively to most people felt learned and incredibly difficult to me, but I didn’t understand why that was the case and in affect, my ability to build self-esteem was practically non-existent. I developed a frustration with my own brain because while I had a multitude of thoughts to share, I struggled to translate them into speech. Despite finishing my school years top of the class, my difficulty with talking as well as my comparative slowness in completing tasks, instilled a belief in my own stupidity. Outside the safety of my nurturing home life and supportive friendships, it didn’t seem to matter how much I achieved, because there would always be that part of myself that was lacking and it would drag behind me as a constant reminder that something was not quite right about me.
Round Peg, Square Hole
By my 21st birthday I had become very aware of how different I was from my peers. I felt like a round peg trying to fit into a square hole, both unsure of how to participate and unsure whether I even wanted to - at least not in the way that had been prescribed to me. I had no interest in celebrating my birthday, not just because I was extremely uncomfortable being the centre of attention, but because I wanted to return to childhood where the mounting weight of expectations couldn’t reach me. While others my age were drinking, partying, and forming sexual relationships, I deviated from the social norms of university life, spending my nights alone in my room reading, writing, and drawing. My emotions felt frustratingly abstract, because while I felt everything very intensely, I had no idea how to communicate their intertwined complexity to others, let alone identify them. To add to the confusion, I seemed to feel the emotions of others almost as though they were my own. I found myself drawn to stargazing, as though the stars were my confidantes; feeling utterly overwhelmed by my emotions was a normal state of being for me and projecting them into the expanse of the night sky felt like some attempt at release.
I soaked in the labels I’d been given throughout my life, that I was too quiet, too serious, and too sensitive. I thought too much and too deeply, so I believed I needed to take life less seriously. I believed, based on what I was learning about the world, that there was something wrong with me, that I needed to change, and that if I just pushed myself harder I could be more like everyone else. I put an enormous amount of pressure on myself to prove my capability and effectively became my own bully, never believing I was good enough. I convinced myself that I liked all the universally ‘fun’ social activities, but more often than not what others enjoyed, I endured. Instead, my idea of fun involved solitary activities, like spending hours in libraries and museums, reflecting in churches and cemeteries, admiring the details of nature, or collecting and organizing trinkets and treasures. At the same time, I began to form an awareness of the fact that I experienced the world in an intense, hypersensitive way that could be either incredibly blissful or incredibly overwhelming.
I tried desperately to become assertive, talkative, laid-back, and unaffected, but all my failed attempts left me with deteriorating mental health and no sense of self. Despite making the most meaningful, supportive friendships of my life during this time, I still stumbled through my early adulthood feeling very lost and alone, struggling to navigate employment, void of any confidence, and withdrawing to find solace in my own fantasies - in the creation of characters who were amalgamated pieces of me. They were the aliens amongst earthlings; the imaginary friends I would bring to life through pictures and stories who understood all my idiosyncrasies, did not expect me to talk and therefore did not see what I lacked. I wholeheartedly immersed myself in a self-help quest for answers, seeking relief from the influx of thoughts and emotions that created a noisy, inescapable cage in my own head. Meanwhile, I attempted to project a facade of self-assured independence as much as I could, naively relying on a future version of myself who was a real grown-up, who would know what she was doing, would know how to navigate life, and would be able to brush off what was once overwhelming. I observed my peers as they developed an abundance of confidence, wondering why I seemed to remain in stasis. When I plucked up the courage to discuss my difficulty with giving presentations for my university assignments - which became more stressful with time, not less - one of my teachers kindly suggested making an accommodation for me, but in the end I decided against it, worried it would draw unwanted attention and believing I should be able to persevere. My teacher tried to reassure me with the knowledge that she too used to be a very shy person but eventually grew out of it. There was that word I had come to despise. Shy. It only made me feel misunderstood. I knew that it was significantly more complex than shyness, and I was right. Because I never grew out of it, I only learned to pretend to be someone I’m not.
Hidden
Shyness was a label that consistently minimized my difficulties - it was a phase I was expected to overcome with age. Yet many things I had struggled with since childhood seemed to become more difficult and stressful the more demanding life became. Shyness did not explain the fact that I knew I would never be able to drive or work a full-time job, that I could not cope with phone calls, that I relied on others to cook my meals, or that the multitude of barriers that prevented me from seeking and obtaining healthcare would become an increasingly difficult battle. Shyness did not explain why I struggled to keep up with the pace of conversations, why I dreaded being asked open-ended questions, or why the performative nature of small talk made me squirm in my skin. Nor did it explain why I would panic in crowded places, or why I’d ruminate over the smallest of interactions hours, days, months, years later, forever troubled by judgemental looks and persistently trying to analyze ‘why’.
What was unknown to others - and even to myself - was that I had spent my life internalizing everything while hiding behind a disguise; trying to appear calm and confident when inside I’d been in a persistent state of fear. As soon as I left the house I would be entering an unpredictable world that would trigger my fight/flight/freeze response. I’d ignored my difficulties and discomfort in order to appear competent, to avoid attention, and because I hadn’t thought these things to be valid - nor did I believe other people would. Because of how successfully I’ve hidden that part of myself, I’ve been invalidated by (well intentioned, but harmful) assumptions that my experience of the world is more or less the same as everyone else’s. The damaging outcome of being told time and time again that my difficulties were normal and common, was learning not to believe them. If the way I experienced the world was no different to the well adjusted person (successful in employment, social skills, and basic self-care) telling me that “everybody gets that sometimes”, that would simply mean I’m not coping as well as they are.
But how do we recognize that a person is struggling if they quietly do what they’re told, never complain, never appear to need help because they never ask for it, and have no understanding of their own internal experience, let alone the ability to express it to others? The undeniable truth is that we don’t. Distress that is not presented externally is invisible. It took years of worsening mental health but being too afraid to seek treatment, of developing chronic and debilitating anxiety, depression, frequent panic attacks, anger issues, obsessive-compulsive rituals, accumulated trauma, and finally an incident where I shut down like a computer losing power, becoming momentarily immobile and non-verbal. It took reaching my absolute breaking point for my distress to become visible and to finally begin to understand what I now know about myself. It was as though up until that point there had been something obscuring my true self and suddenly, having reached the limit of my capacity to maintain it, it was beginning to crumble away. What it revealed underneath was my autistic self.
A New Obsession
Stereotypes and myths were the full extent of my knowledge on autism - that is, before I began researching it and, about ten months later, received a formal diagnosis. So despite the fact that almost a decade earlier I had borrowed a book from the library about Asperger’s syndrome because I strongly related to it, I never would have considered it a possibility, nor would anyone else. Not until I began learning about the concept of masking/camouflaging (consciously or subconsciously hiding autistic traits in order to fit in) and listening to the experiences of an increasing number of women who had been diagnosed late in life - in their 30s, 40s, 50s, and even older. I learned that back in the 1980s and ‘90s when I was a young child very little was known about autism and it was rarely recognized in girls. Today girls are still less likely to be diagnosed than boys - not because it is less common but because of gender biases in research and gender-based social pressures that increase the likelihood of masking. In addition to this, children without an intellectual disability or language delay were unlikely to be recognized until the diagnostic criteria was expanded, giving the false illusion of a rising ‘epidemic’ - which in turn sparked the anti-vaccine debate in the 1990s.
After the epiphany-inducing moment where I read the description of a shutdown, I spent the following months researching autism intensely. It became my latest obsession and it was, by no exaggeration, all I could think about. I read books in secret, worried about how anyone would react to my sudden unusual interest. Every day I listened to seminars and presentations given by autistic people and my disbelief in how strongly I related to them brought me to tears. Their brains seemed to work the same way mine did and when they talked about their experiences it felt like they were explaining my own. They offered me a brand new perspective on what I had always viewed as my defects. As Steve Silberman (journalist and author of Neurotribes, 2015) described it; by their autistic standards “the ‘normal’ brain is easily distractible, is obsessively social, and suffers from a deficit of attention to detail and routine. Thus people on the spectrum experience the neurotypical world as relentlessly unpredictable and chaotic, perpetually turned up too loud, and full of people who have little respect for personal space”.
The more I learned, the more I began to understand myself - and finally acknowledging my sensory sensitivities came as a huge revelation. The long list of noises, smells, textures, and visuals that overloaded me while going unnoticed by others - the things that made me feel constantly irritable without understanding why - became tangible things I could have some control over. I began to learn how to care for myself and how to advocate for my needs, noticing that all the changes I implemented were reducing my daily anxiety. For the first time in my life I stopped fighting my own brain, stopped trying to mold it into something it would never be, and started to finally listen to the accumulating mass of ignored signals that my nervous system had been trying to send me. I experienced many dramatically positive changes during this time, but the greatest one of all was how I became kinder to myself. In fact, I started to actually like myself for who I was - a somewhat foreign concept for me. Once I stopped comparing myself to others, what I found was that I was no longer a defective version of a neurotypical person but a wonderfully complex neurodivergent person. In the hope of expanding others’ knowledge as my research has done for me, in the next section I will share my own summarized understanding of autism (while acknowledging I cannot speak for all) before returning to my personal story.
From the Inside
“Never believe anything you read about autism” is how Dr. Luke Beardon (author, autism rights advocate, researcher and lecturer in autism) begins one of his books. It may sound like a drastic statement but is sadly a necessary word of warning. Though the narrative is changing positively thanks to the work of autistic activists, the overwhelming majority of information is based on behavioural observations from non-autistic people. Donna Williams, the autistic writer and activist, commented on this flawed external perspective, saying that “right from the start, from the time someone came up with the word ‘autism’, the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced” (1996). The rhetoric is still dominated by heavily outdated research and the history of autism itself is a disturbing and dehumanizing one. Historically, the predominant attitude towards autism has been one of tragedy; that parents of autistic children must go through a grieving process as though the child they were expecting has died. Common therapies have utilized aversive techniques on autistic children to punish their natural autistic behaviours, with the goal of making them appear “indistinguishable from their peers” - in other words, ‘normal’. Horrifyingly abusive methods have been inflicted on autistic children in the name of treatment, all in a misguided and misinformed attempt to cure what is still viewed by many - parents and medical practitioners alike - as an illness.
Autism is not a mental illness or a disease, nor is it the rare condition it was once thought of - as the increasing numbers of late diagnosed adults are testament to. It is, however, very common for autistic people to develop co-occurring conditions like depression and anxiety, as a result of how they are negatively perceived and treated by others, bullying, social challenges, masking, low self-esteem, lack of self-understanding, and ultimately living in a world that is not designed for them. Autism is a neurological difference present at birth that affects each person differently and can occur with the addition of an intellectual disability, a speech and language impairment, or without. While it can be extremely disabling for some, the degree to which it might disable a person can fluctuate throughout the course of their life as well as on a day to day basis, dependent on factors like environment, changes to routine, social demands, and the accumulation of stress. The ‘spectrum’ used to define it is often imagined as linear, with low functioning (or severe) on one end and high functioning (or mild) on the other, but using functioning terms is an overly simplistic concept which can be demeaning to those who require more support or invalidating to those who do not outwardly appear disabled. In reality it is far more complex than this. The autistic population is extremely diverse which means that no two autistic people are the same and their support needs may differ greatly. Autism is part of our genetic diversity as a species and has been passed down through generations of families, contributing to a vibrant - but misunderstood - culture of original thinkers who break the mold of normality and stray from conformity. But where difference should be celebrated in our society, we know that it is often not treated kindly. While heavily pathologized in their clinical definitions, autistic traits are in actuality human traits, so while they are relatable to many, it is the combination, intensity, and frequency of these traits that lead to a diagnosis.
The same way that we would classify anything in our world in order to better understand it, ‘autistic’ describes a brain type that is neurologically different to the majority. This means that autistic people think, communicate, and process information differently. The neurotypical brain will take in the big picture, automatically filter out sensory information it deems unimportant, tends to focus on a variety of things on a more surface level, and will readily switch from one thing to another. In comparison, the autistic brain is detail focused, taking in far more information, and tends to focus intensely on one thing at a time. This can lead to a unique ability to hyper-focus for extended periods of time, an obsessive fixation on interests, difficulty with transitions and interruptions, the need for instructions to be specific, and for tasks to be broken down into much smaller parts. Everyday occurrences like having a casual conversation may seem mundane to a neurotypical person, but can cause intense anxiety for an autistic person due to the extent of sensory information their brains have to process - on top of all the social intricacies that neurotypicals know intuitively but for autistics, require some interpretation. A simple trip to a store may require extensive planning and preparation (including rehearsing conversations, for example) but due to the unpredictable nature of life itself, can potentially result in an external meltdown or an internal shutdown. These are involuntary responses to distress which may appear ‘out of the blue’ to an observer but are often preceded by a build up of stressors that the autistic person has coped with up until that point. In these instances, typical methods of comforting (such as showing concern, asking questions, and offering affection) may have the opposite effect to what is intended, as they can further overwhelm the autistic person. Difficulties with identifying and understanding their own internal state mean that when asked to explain what is wrong or how they are feeling, the autistic person may genuinely not know. Giving them space without judgement may be the best way to support them.
Experiencing the neurotypical world in this way results in processing delays, is extremely energy consuming, can cause severe anxiety and even trauma. On top of this, the autistic person may not be believed and their responses may be viewed as problematic behaviour, as the intensity of what they experience is difficult for a neurotypical person to empathize with or to comprehend without experiencing it themselves. Autism researcher Emma Reardon explains that “When an autistic person experiences sensory trauma, our reaction to these painful or distressing experiences is not due to an inability to cope or an over-reaction - our response is proportional to our experience” (2021). Understandably, autistic people characteristically seek repetition and sameness in order to gain what little control they have in a chaotic world, using repetitive behaviours and strict adherence to routines as a way to regulate themselves and to self-soothe.
Answers
Many months after my own self-discovery - despite the excessively high levels of stress I had been enduring in anticipation - I sat in the office of a psychologist who specializes in assessing girls and women for autism. Knowing how much I would struggle to communicate orally, I went into the assessment armed with a 13 page document I had been writing and editing for months where I’d outlined my self-analysis within the diagnostic criteria (in response I was told “you’re not the first person to do this”). Because there is no diagnostic testing specifically designed for adults, the assessment was adapted from a system that is really meant for children. For this and many other reasons it was a surreal experience, but especially so knowing that for the first time in my life I did not have to hide my anxiety or pretend to be someone I’m not in front of a stranger - in fact, that would be counterproductive. One nail-bitingly anxious month later and I was given the results of my assessment via video call. After an explanation of the results from my interview, my husband’s interview, the psychological tests I completed, and the review of my supporting documents from childhood, I was told “all of the evidence converged on the same conclusion which is that you have autism.”
After the call I stood by the window and looked out at the world, feeling the hum of life as it carried on as usual. Everything looked the same, but it felt very different because I finally knew my place in it. It felt as though my brain was rewiring itself, in a way that was reassuringly healing. The connections that had always been there but I’d tried so hard to manipulate, to pull apart, to neglect, were finally brought together in a paradoxical moment of dazed clarity. What I had come to learn with a strong sense of certainty about myself and my experience of the world, had been confirmed and validated by an expert. I was not going crazy, I had figured out something life-changing. It was the answer to the questions I had been asking myself for decades. Despite the full report I would receive a few days later, which I was warned would emphasize my deficits, I was ecstatically happy because at the age of 36, I finally understood myself. It was clear cause for celebration, so my husband and I shared some sparkling wine as we let the news settle. The overwhelming thought that echoed throughout my mind was everything finally makes sense.
World Off My Shoulders
It seems befitting that I would come to this discovery on my own, as the labels that have defined me up until now were not of my own making but given to me by others. Some may choose to reduce diagnoses and identities to a label, but for those of us who have spent much of our lives feeling untethered and lost at sea, the moment we find the language to describe our experience can be like finding the lighthouse that gives us direction in a smothering fog. Knowledge is most certainly power and gaining this information is an essential element in understanding who we are. Not only that, it can quite literally save lives. Labels matter, because whether we’d like to admit it or not, many of us will spend our lives being harmfully mislabelled.
My diagnosis has given me permission to unapologetically be myself and compassionately accept my limitations. A secondary school teacher once told me in passing that I looked like I had the weight of the world on my shoulders, and as much as it bothered me at the time, I guess there was some truth to it. The world always felt much more like it confined me than grounded me. But the more I am my authentic self, the more that weight feels like it’s being lifted. I no longer choose to waste my energy on a fruitless fight against my own brain to live up to some narrow measure of ‘normal’. So in light of my newfound self-acceptance, it seems there is no better time than now to answer the question that has forced me to monitor my word count in conversation, lest I be outed as abnormal. The question that has made me feel so small up until now: “How come you never talk?” For the very same reason that you may not write, paint, or dance; because it does not come intuitively. In your world, I have communication impairments, in my world, I am communicating constantly - with my hands and my body. I draw and I paint because visualizing thoughts, ideas, and emotions is often easier than verbalizing them. I write because I have so many things to say but I need time to process my thoughts without the pressure of social engagement. I use colour and fashion as a way to separate myself from the crowd and assert my intrinsic need for autonomy. I dance because I use my body to express my emotions; a kinetic representation of my love of music and my joy in being alive - something that words fail to adequately convey.
Withdrawing into a world of one’s own was the behaviour that inspired the first use of the word ‘autism’ in psychiatry. Like its origins, my own withdrawal has often been misunderstood as a self-indulgent symptom or an indication of conflict rather than what it really is; a plain and simple need. In a world that prizes extreme sociability, fears being alone, and is discomforted by silence, the pressure to socialize beyond my capabilities has denied me a core element to my well-being. I seek solitude constantly, not because I’m self-absorbed or anti-social, but because being alone is as essential to me as breathing. It’s my safe haven, a place where I can rest, where I am no longer constrained by demands and expectations, where I can unmask and be myself, free of judgement. But far from merely being a survival mechanism, it’s where I thrive. In my own world I am free to delve into the depths of my mind, where hyper-analytical thought is not a burden but a liberating act of curiosity. Where the sensory world does not overload me but is instead where I find magic in the ordinary. A rich and exquisitely detailed world of colours, sounds, and textures, where light plays seesaw with shadow, where familiar scents are a warm blanket gently wrapping around me, where time is an infinite loop and I am no longer governed by speed. From the tiny insect that sits upon the branch of a tree to the incomprehensibly endless night sky, I become fleetingly lucid in the sense that I am connected to everything - ultimately, that I belong. Being in my own world is not just a desire or a preference, it’s a fundamental need that reminds me who I am.
Never Change
Like Alice in Wonderland, my story has been one of seeking logic in a nonsensical dream world, where people seem to speak in riddles and I grow and shrink, yet exhaustingly never seem to quite fit. Not until finding one key insight was I able to finally unlock the door to that beautiful garden I yearned for - the one that held the answers to my own self-understanding. But I hope that in sharing my story, its aim has not been misunderstood, for I’m not seeking sympathy. I believe it would be a presumptuous mistake to pity those who lack what you have, because in their place may be the very things that you lack. Nor am I seeking praise for what I’ve achieved ‘in spite of’ being autistic. On the contrary, my greatest skills and achievements are a direct result of my neurology, not just my challenges. Not only that, I also recognize my own good luck - in being able to enjoy my childhood in environments that were well suited to my needs while being surrounded by family who have supported me unconditionally in everything I do. All I am seeking is an understanding that my experience of the world differs from your own - an understanding that would render judgement by normative standards invalid. Meet me half way and recognize our differences, because rather than being something to fear or deny, it could serve to help us in better understanding both ourselves and one another. I’m wide awake in the knowledge of who I am now and if becoming more like everyone else would mean giving up that rich inner world where I experience absolute euphoric joy, then I can say resoundingly that I would never want to change a thing. And I think it’s safe to say that my two-year-old self - so enthralled by a particular 1989 song that she would run back and forth yelling the lyrics “Never change!” - would agree with me.
“Autism isn’t something that a person has, or a “shell” that person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colours every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person—and if it were possible, the person you’d have left would not be the same person you started with.”
- Jim Sinclair, Don’t Mourn For Us, 1993
For a virtual idea of what it’s like to experience the neurotypical world as an autistic person, please visit the National Autistic Society's Youtube Channel for their short video series called ‘Too Much Information’. (Keeping in mind that these are only examples and not indicative of every autistic person’s experience.)
For further information on autism as well as free online tests (for those who are wondering about themselves), I recommend visiting the website www.embrace-autism.com
The following text and photographs were taken from a book I made in university when I was 21 years old. I felt embarrassed by it in the years following its creation, keeping it hidden away as I worried it exposed too much of my inner, private self. Coming back to it post-diagnosis, it feels like a surprisingly obvious expression of self-discovery and an attempt to share my autistic traits with others in the best way I knew how; through art and writing.