Lavender Oil and Sticker Charts
Wait! What?
Margot Albrecht’s Column.
Margot is a mature aged creative writing honours student
’m a mother of an autistic young woman, however, until two years ago I could not have legitimately made that statement. Nor could my daughter have been able to legitimately identify as autistic. My family experienced sixteen years of both armchair, and actual experts, pigeonholing my daughter under the one-size-fits-all label of ‘generalised anxiety’.
Back in 2004, as an expectant first-time mother, I had the persistent, unfiltered drip-feed from family, friends, neighbours, supermarket check-out operators, hairdressers, everyman and their dog, who all offered opinions and advice on pregnancy and parenting; on what I was doing wrong and why my new baby girl would not stop crying and would not sleep. I was spoiling her by holding her too much. I needed to be tough. I needed to let her cry. Babies like going for walks in a pram (my baby didn’t). Babies like being bathed (my baby didn’t). Babies like car rides (my baby didn’t). My baby screamed through everything that ‘normal’ babies liked.
And so it went on.
At kindy I was informed my daughter had ‘severe separation anxiety’ and that I should make our home so uncomfortable and unwelcoming that she would want to leave it to come to kindy. I was advised my daughter should see a child psychologist. We dutifully booked her in with the recommended psychologist, only to be told that our daughter was ‘spoilt and used to getting her own way’.
And so it went on.
At primary school we were advised, once more, to somehow deconstruct our home from the safe haven that I had intentionally created for my little family to something less inviting, the theory being (again) that my daughter would be glad to be away from it. At the behest of educators and mental health professionals, we devised sticker chart reward systems; going to school was ‘good’ and warranted a sticker. Not going to school was ‘bad’ and a sticker was taken away. We invested in aromatherapy diffusers and organic essential lavender oil in little roll-on bottles, which we applied to her pulse points; behind her ears, wrists, temples and bottom of her feet. Her school refusal became so chronic, that the front desk receptionist warned me the school might have to involve the police. ‘Good,’ I said. ‘Call the police. Then we might actually get some help.’
And so it went on.
I knew, in my gut, that whatever was going on with my daughter, it was bigger than lavender oil and sticker charts. But neither she, nor I, nor her father could put a name to it.
And so it went on… until October 2019. A close friend of mine, who has known my daughter since she was six months old, sent me a text message. It read: Have you considered that your daughter might be autistic? It presents differently in girls.
Wait! What?
Autistic? I was almost offended. My knowledge of autism was limited to the Hollywood ‘genius savant’ portrayed by Dustin Hoffman in the 1996 movie Rain Man, and the little boy at my kids’ school who had chair-throwing meltdowns in the classroom. My daughter didn’t throw chairs. But she did have meltdowns once she was within the confines of her overly comfortable, safe-haven home.
Then, two days after I received that well-meaning but disconcerting message from my friend, we were in Melbourne for PAX (the gaming Force is strong in our family). We were at a bustling, noisy Thai restaurant and my daughter was shutting down, getting teary and panicked. Wordlessly, I opened the message from my friend and covertly passed it under the table to my husband. I studied him as he read the message, waiting for a dismissive eye-roll and for him to sling my phone back to me with a reassuring ‘of course our daughter isn’t autistic’ look. But he didn’t. His expression was serious as he read my friend’s message. Then his eyes met mine. And he nodded.
In that moment, my perception of our little world changed. Permanently.
I gingerly offered my daughter my ear buds to distract her from the ambient noise of the busy restaurant. She accepted, put them in and then sat, quietly absorbed in her Switch, until it was time to leave.
Once we returned to Adelaide, I began trying the word ‘autism’ out for size. I floated it past educators, health professionals, family and friends. Their response was unified: my daughter couldn’t possibly be autistic. She can smile. She makes eye contact. She has a sense of humour. She has empathy. She doesn’t look autistic.
And so it went on.
She lasted for two weeks at High School. We then home schooled her. She was withdrawing into herself. My beautiful, vibrant, creative, loving, funny, caring daughter was becoming a shadow. Paler. Thinner. I feared she might disappear altogether. Cease to exist. I was bewildered and terrified. Still, she could not put into words how she felt.
But, thanks to a character in a JRPG and a WordPress blog post, everything was about to change.
At the end of 2020, my daughter mentioned how much she identifies with Futaba, a character from Persona 5. Here are some screenshots she shared with me:
My own research led me to a blog by Sam Rowett, a UK based professional Game & Narrative Designer, which was written in a way that helped me to understand.
I read it. And re-read it. Finally, finally, my daughter had found a way to verbalise her experience. I sent a link of Sam Rowett’s article to her psychologist and by May of 2021 my daughter was finally, finally officially diagnosed with ASD (Autism Spectrum Disorder). On receiving her diagnosis, my daughter burst into tears of relief and joy and thanked the medical professional. I cried too but my relief was also tinged with fear. How would our life look now? What will the future hold for my daughter? One close family member, on hearing about my daughter’s autism diagnosis, blurted, ‘Oh, that’s awful. They can’t cure that, can they?’
This isn’t one of those ‘just add a diagnosis and everyone lived happily ever after’ stories. My daughter faces ongoing daily challenges as a neurodivergent young woman navigating a neurotypical society. As soon as my daughter was legally old enough to leave school, we pulled her out. She now devotes her time to her passions: digital art, gaming and streaming. She has taught herself to play the drums, electric and bass guitar. She is currently attending weekly singing lessons. She has a small band of loyal online friends but her old school friends have, naturally, left her behind as they forge ahead with boyfriends, partying, driving, gap years and Uni. While my daughter is yet to venture too far into the ‘real’ world beyond her comfort zone of home and games, it remains my hope that one day, the rest of the world will be lucky enough to know my daughter as I do: vibrant, funny, caring, creative, courageous, Autistic.
I’d love to hear about your own Wait! What? moments, where your perception of self, or others, has been altered by finally receiving a long-awaited diagnosis.
EDITORIAL NOTE: This article has been reuploaded and was originally published in 2023.