I am not a parent. I sometimes forget to feed myself, never mind my own offspring. But I do have autism and I have a mother who raised me for the past 20 years of her life. I was diagnosed when I turned 18, but I was autistic from the moment I was born. This meant my mum was blindly given a daughter with autism, without understanding its meaning.
My diagnosis positively changed both my life and hers, and while she blames herself for my receiving it late in life, I refuse to blame her. I hid it well: I learned to copy people and to identify social cues; I learned to make friends, abandoning my imaginary ones for more complex humans, and I learned to smile, laugh, and sober up at all the right moments. Depending on who you ask, my childhood could be painted as picture perfect: an adoring mother and father, a comfortable home, toys in abundance, and eye-opening trips to exotic lands. And that is all true, but, like any childhood, it was not flawless.
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My exterior life was lavish, but the problem lay within myself and my struggle to comprehend the world. I was lonely and unsympathetic. I was often called rude and found myself in explosive arguments caused by my own uncontrollable rage. Eventually, approaching the later stages of my teenage years, I learned to mask. I excelled in both school and extracurricular activities, filled my time with reading, competing in sporting events, and working as a coach.
For all intents and purposes, I blended in as just ‘mildly eccentric’. But I was unable to shake this feeling that I experienced the world differently than others around me. It was not until I found myself in a conversation about sensitivity to certain noises and my glaringly obvious inability to process unexpected changes that the word autism was even mentioned.
I confess, after that conversation, I became a ‘doctor’. I researched autism for hours and found myself able to relate to extensive lists of typical traits of autism. I became a concoction of doubt, nerves, and optimism. I thought back over my childhood and found a plethora of evidence to support an ASD diagnosis.
But I knew approaching the topic with my mother would have to be done with caution. She was not pleased when I suggested to her that I might be autistic and, at the time, her lack of support hurt. I believed her perceptions of autism relied on the mistaken stereotypes, and that she struggled to compare her only daughter to them. Now, I appreciate that she felt guilty for being unaware of the signs.
Before my diagnosis, my opinions would clash with my mother’s: we would shout and become irate, unable to understand one another’s perspectives. On my own, I approached the subject with an occupational therapist who referred me for a diagnosis test. The assessment required a parent or guardian’s input and, whilst my mum was reluctant, she answered all the questions asked.
When I was given the diagnosis, firmly confirming that I do have autism, my mother and I’s relationship truly started to flourish. I began to unmask, a revelation of my true personality as a young adult. My mother was finally able to understand my previous and current behaviors. And I was able to understand hers.
Two years on, I sit writing this from my bedroom roof, under a sky so blue it pacifies compounded sensory overload from a day of working and sticky sun. Nostalgia intertwines with love. Love for the serenity of the evening sky and love for my mother, who sits in the living room below me. I know raising me was not easy and, thankfully, I know she would never change what we went through.
Right now, I consider a parallel universe, where the diagnosis came the moment my parents realised my speech was lagging in development. I contemplate the difference it would have made to my life and, like my mum, I am not sure I would change it. I cannot deny it was challenging. That sometimes I knew my mum had been crying out of worry. But, as cliché as it seems, we are both stronger because of it.
My mother, like any parent or guardian to any child, is my rock. I shout for her in the mornings, we fight over who has to chop the onion at dinner time, I lay with her at night, watching adorable videos of dogs on the internet. I am not afraid to hold her hand in public, to feel her soft skin, comforting and familiar. During university, I live six hours away from her, but we call multiple times a day, Facetiming whilst carrying out the most mundane tasks.
My mum, like many caring for someone with autism, will blame herself for my lack of diagnosis. My mum, like many caring for someone with autism, will take responsibility for my emotions, doing her best to make the world as safe for me as her maternal powers will let her.
And still, no matter how hard she works, she fails to see her success. I have cried rivers of tears and felt isolated. With all credit to my mother, I have managed to excel at school, achieve three jobs, and move to university. I refuse to lay blame on my mum for not noticing my autism. Without her, I would not have the confidence to get out of bed.
I know I am not a parent; I still ask my mum to tell me what we are having for dinner, twenty-four hours in advance. But I am an autistic daughter, and I just want to tell you to keep going because, parents and carers, you are doing a fantastic job.
This article was featured in Issue 109 – Attaining Good Health.