Marie Lakey and the “magic” of being a neurodiverse person
4 June 2021
Marie, aged 6. (Image supplied)
It was the beginning of Black Summer in 2020, and climate activist Marie Lakey was in regional New South Wales. The news of the bushfires' impacts on the climate rang out across Australia, and Marie was staying with her then partner’s family who were grieving the loss of their property.
Already feeling anxious, Marie then experienced something not unfamiliar to her.
“I had what I would describe as a meltdown where I wasn't able to communicate, I couldn't talk, I couldn't use words”.
“I was just so much in my head that it felt like a computer that was running too many different algorithms, and it's really hot and then it shuts down and there's just nothing you can do because there's too much going on.”
It wasn’t the first meltdown in a stressful period in Marie’s life, but it was the first time she’d begun to connect these meltdowns with symptoms of Autism Spectrum Disorder. At 27, Marie sought an assessment.
Historically representations of autism in media are almost uniform: intelligent, socially inept, male.
It’s a pop culture trope that both informs and perpetuates societal perceptions of autism, and it impacts when women with autism are diagnosed — if at all.
Previously, research told us that women with autism without intellectual impairment, also known as Aspergers, exist at a ratio of 10:1 to men with the same condition. However, new research tells us that the ratio is actually 3:1. The same study showed that autism presents differently between genders, with women 3–4 times more likely to observe and adopt social cues to mask their symptoms than men.
This ability to mask traits of autism leads to women generally being diagnosed much later than men. For many women this delay can lead to secondary mental health issues, like anxiety and depression. The constant masking and mental ill health is exhausting.
The dots further began to join for Marie when she spoke with a psychologist.
Marie could now see that some of her behaviours were symptoms of autism, like her sensitivity to noise and compulsion to chew gum when stressed (her doctor has theorised this is a stim). Even her struggle with disordered eating in her late teens and early twenties made more sense — over a fifth of women hospitalised for anorexia meet the diagnostic criteria for autism.
Marie’s sister Louise says an earlier diagnosis would have allowed Marie knowledge about herself that would have benefited her mental health.
“Instead of masking in a way that's hiding yourself, you can use coping mechanisms or tactics based in knowledge rather than thinking you’re hiding something about yourself that's wrong in some way,” Lousie said.
Louise said that looking back on Marie’s struggles socially at school now through the lens of her diagnosis, “it’s easy to say ‘oh yeah, autism, of course!’”
“There was definitely a point around third or fourth grade when she wasn’t masking it as well and the other kids thought she was weird … I think there was a level of like ‘oh this is why I struggled when I was younger.’”
Marie agrees. The stress of masking her behaviour was a familiar one, especially throughout her schooling when she’d study and copy others to try to avoid being bullied.
“That kind of hyper awareness of what's going on around you so that you can fit into whatever situation you could ... My understanding is that most people don’t need to be hyper aware because it comes more intuitively, whereas for people on the spectrum it can be quite a lot of work,” Marie said.
Marie is at home in the bush.
When she was six, her parents moved the family from suburban Geelong to an acre block in Mount Macedon. Marie said that while she felt disconnected from school, at home she was able to slip into her imagination in the wide open spaces and greenery.
“I always felt I was in this fantasy world in Mount Macedon ... this fantasy world that existed underneath the bush or in the forest”.
“I think that really influenced my later years by giving me a really strong sense of connection with nature.”
In Marie’s late teens and early twenties she lived in Melbourne. Here, she would seek out long walks in green spaces that helped her as she healed from her eating disorder.
Marie looks back at times in her life spent escaping into nature with a “very visceral sense of being supported by something that was larger than me”.
These experiences formed the basis for her climate activism.
“I remember having this point where I felt like I really wanted to look after the things that had looked after me ... It felt like doing something about climate change was the best way I could give back,” Marie said.
Following her diagnosis, Marie moved out of Melbourne to Castlemaine to take up full time work at Hepburn Wind, a community owned wind farm.
Louise says that Marie’s diagnosis and her return to greener spaces has catalysed a shift in her sister.
“She does seem much more comfortable, at home in herself,” Louise said.
Marie, aged 28. (Image supplied)
“But you don’t look autistic.”
Since her diagnosis, Marie has heard these words from people around her often, who point to her extroversion and empathic nature in disbelief.
It's important to Marie that people's expectations and understanding of autism aren't just shaped by what we see in movies and television. Autism is a broad spectrum, and can present differently in different people.
“We often come at these things with really narrow stereotypes and ideas of what people could create or how they could experience the world, while actually the breadth of experience we have is so much broader”.
“I think that's some of the magic of being a neurodiverse person - getting to see and feel the world differently.”
June 18 is National Autism Pride Day. For more information head to www.amaze.org.au.
Words by Ellie Mitchell. This article was published as part of RMIT Graduate Diploma of Journalism 2021 coursework.