autism is an integral part of our identity and not something we would ever change, or are ashamed of.
I would like the non-autistic community to understand that for a lot of Autistic people,
Hi! My name is Lo and I am 29 years old. I live in Newcastle, NSW with my two siblings who are also my very close friends. I am happily single after many years of being stuck in domestic violence. I have a small group of great friends.
I am currently off work as a result of a series of workplace incidents, that resulted in a rapid decline of my mental health. I hope to return to work as soon as I can, as I loved my job in the disability sector. I love the ocean, rugby league, researching and learning about new things, tattoos, listening to music, flowers, crystals, weird and fun glasses, late night drives to nowhere and social justice politics.
I had never, ever considered I was Autistic until I met Britt, when I started working in a job as a behaviour support practitioner. It was my role to support families who felt they were at risk of relinquishing their Autistic child due to their behaviour. I would support the family to make positive changes in the environment to assist their child in regulating their emotions (for example, introducing sensory play or a different method of communication). At the time of starting this job, I had worked with Autistic children and adults within a support role for over five years, and the thought of being Autistic myself had never crossed my mind.
The inner search for identity was not new to me. Prior to realising I was Autistic, I had come out as gay at 14 years old. I started questioning my gender identity when I was around 19 years old, never feeling as though I was quite a woman, but definitely didn’t feel like a man either. It took me a few years and a lot of researching to discover the term “non binary”. I felt connected to the idea of having a gender that didn’t fit the socially forced and expected gender binary. As time went by, I was introduced to the term “agender” and felt this was the perfect word to match how I felt.
Around the same age that I came out as gay, I was also doing research online about psychopaths and sociopaths. I spent hours trying to find a list of symptoms that I could identify with. I grew up with a sense that I was different, and once puberty hit, the feeling of difference took a dark turn to feeling broken. Along with learning about the various symptoms and differences between psychopathy and sociopathy, I spent time learning about various other psychological conditions such as bipolar disorder and schizophrenia. I never found anything that I felt truly fit me. You would think that may provide a sense of relief, but all it did was further burden me with a sense that I would never fit in. I was even too weird to be crazy.
My colleague (now friend) Britt, who is Autistic herself, and also obtained a PhD through exploring autism, one day gently suggested she thought I may be Autistic. Allow me to set the scene - it was August 2014, we were sitting in the office we shared together. I had been doing my usual midday routine of lining up all of my desk items (stapler, hole punch, pens, phone, keyboard etc) with my back to Britt, never making eye contact but doing my best to fulfil social workplace niceties. I spun around in my chair and exclaimed “autism!?” with a furrowed brow. I laughed it off.
We continued to speak about the likelihood of me being Autistic over the coming days. Britt introduced me to the long list of ways that autism presents differently in women and assigned female at birth (AFAB) people. Days turned to weeks, and finally something inside me clicked. I felt like Britt had metaphorically skipped a stone over the ocean of my mind, and with the succession of each quick dance over the water, I had a new realisation about myself. I truly had a “lightbulb moment” and felt honest, immediate relief. This was something that fit me, at long last. I had finally found the list I had spent my teenage years searching for.
Now, using the same metaphor, of course eventually the stone will cease skimming the surface and will sink to its resting place. This, too, was similar to my experience with realising I was Autistic. After I had so many realisations about just how absolutely spot on me being Autistic was, they just kept going, but there was a brief yet intense sadness that set in. Why had nobody ever realised before? Why have I lived my life not knowing this about myself? Would growing up have been made easier if I was afforded the concessions I may have needed to thrive? The feeling of sadness did not turn to grief, like it does for many Autistic people who don’t discover autism until later in life. The feeling of relief far outweighed the sadness of being invisible.
A few months after I had my lightbulb realisation, I decided I wanted to validate my feelings with a professional diagnosis. This was a really scary prospect for me, but something I felt like I had to do. In January 2015, I had my formal diagnostic assessment. It was nerve wracking. I knew whole heartedly that I was Autistic, by this stage there was no doubt in my mind, however I was plagued with self doubt. What if I had just made myself think I was Autistic? What if I’m not Autistic enough?
In hindsight, I didn’t need to worry. The psychologist who did my assessment told me confidently that I was, as I expected, Autistic. She must have noticed my jubilance, as she congratulated me, which I really appreciated. I felt like it truly was a congratulatory moment - I had survived 25 years of my life in a constant state of identity crisis, and now I was free.
Since my diagnosis, both self and professional, I have actively worked hard to “take the mask off”. I felt like my diagnosis afforded me the option to just be myself, now that I knew I wasn’t a bad person. You often read that it is an incredibly common trait for women and AFAB people to act like chameleons, and adjust their behaviour based on the setting, mimicking their peers. Masking refers to the idea that sometimes we put different masks on, to perform social behaviour such as small talk conversation, usually around different people or in a variety of settings such as work or parties. I intentionally used the word “perform” as that is what it often feels like. Masking is exhausting work, and I often need days or even weeks to recover from certain social situations. The contrary side of masking to present yourself a certain way also means you mask to avoid behaving in a manner that is not considered to be socially acceptable. A good example of this, for me, is stimming. I have had to find socially acceptable ways to stim in public such as playing with my hair or scrolling through my phone. I am slowly allowing myself to be wholly Autistic, however that may look, unapologetically.
Discovering my Autistic identity has been a process that has evolved from the first instance when Britt introduced me to the idea, to where I am today. When I worked supporting Autistic people, I used the terms “on the spectrum” or “has autism”. Language is very important, and the way I refer to myself and other Autistics has changed over the years. I use identity first language. It is important to note that the language an Autistic uses for themselves will differ, and all of them are completely valid. For me, I intentionally capitalise the “A” in Autistic, as it is an integral part of my identity and deserves to be a proper noun, just like my name and where I live. Capitalising Autistic, but not autism, shows the contrast between autism as something you have, versus autism as an identity. Being Autistic is a fundamental part of who I am, and I am unbelievably proud of being Autistic.
Coming to learn more about myself through an Autistic lens has changed my life. I understand myself so much more, and there is a framework now that I never had in the past. I use this framework to help make sense of my world, and the world around me. I don’t put so much pressure on myself to conform or fit in (not like I ever succeeded at that anyway!) and I don’t feel the need to force myself to make eye contact, as it feels like my eyes are burning inside my skull and I can’t listen properly. I have more of an understanding of my boundaries and what I can and cannot do. I accept myself. I have found myself. Everything and anything of what makes me, me, is built and supported around the fact I am Autistic. It is fundamental to my operating system; it IS my operating system. Discovering my Autistic identity has only blessed me with positive things - my family understand my quirkiness more, my friends know I’m not being rude if I happen say things bluntly. However, truly the best and most important thing I have been gifted with is Autistic community. The women I have met over the last four years have changed my life. There is nothing quite like feeling at home with people you barely know.
As you can see, being professionally diagnosed with autism has blessed me with so many things, but the most important is the fact I have been able to soothe the inner child who feels confused, misunderstood, invisible. I’m not broken or lost, I’m Autistic, and I wouldn’t change it for a damn thing.