As the world becomes more aware of the importance of mental health, I’m learning to embrace my personal journey of getting diagnosed with Autism Spectrum Disorder as an adult.
Admittedly, even just a few weeks ago, I had no idea April was Autism Acceptance Month. This seems rather fitting, as for the majority of my life, I was not aware that I had Autism Spectrum Disorder. While Hong Kong is becoming more conscious about the importance of mental health by making counselling services more accessible and more companies are now encouraging mental health days, the Autism Spectrum (especially for women) is quite a different ball game. As my personal mental health journey evolves, with the help of resources like medication and therapy, I thought I’d take this month to be more vocally accepting myself – and share my experience of getting diagnosed with autism as an adult.
My experience with being diagnosed with autism as an adult
Does “women and children first” only apply to sinking ships?
I was only clinically diagnosed with Autism Spectrum Disorder (ASD) a few weeks after I had turned 24 years old. I can honestly say that not having this knowledge for most of my life, including my entire childhood, cast a noticeable darkness over my mental health. However, I soon discovered that my story is not at all uncommon. In fact, although estimates find that boys are four times more likely to receive an ASD diagnosis than girls, it’s becoming apparent that the number of females and males that have ASD is almost the same. Perhaps because areas of mental health are becoming less male-centric and struggles that women go through are taken more seriously, more girls are readily diagnosed nowadays. Still, a large percentage do not find this diagnosis until adulthood.
Discovering my diagnosis was a bookmark in a bleak period of my life when I was living in New York. After a particularly dark chapter in my struggles with depression and anxiety, I came to the epiphany that I should start being more honest with my mental healthcare providers to truly try and get “better” (honesty – what a concept!). I opened up to my therapist about almost anything and everything that had ever troubled me – what I’d kept hidden out of embarrassment or simply thought it’s “just one of those things.” Although I had some obvious symptoms of autism, I often concealed a lot of myself due to feelings of shame. After a few sessions with my therapist and this new attitude, she asked me point-blank: what do you think about getting tested for Autism Spectrum Disorder?
The double-edged sword of the mask
Although the diagnosis process took two sessions and several gruelling hours, it spat out a clear result: “Yeah, you definitely have Autism Spectrum Disorder.” It wasn’t until I was finally able to put a name to what I’d just assumed was an “extremely defective personality,” that I could look back at my life and recognise it for the first time. While ASD may look different for every individual, a common phenomenon of those assigned female at birth is “masking.” A lot of women with ASD are more likely to fly under the radar by learning to camouflage their symptoms. With my diagnosis, I was able to identify the ways in which I would twist myself into knots, trying to copy socially acceptable behaviours.
It would be little things, like mimicking conversations I saw play out in movies or in real life, then trying to copy and paste them elsewhere – because I had concrete proof that these strings of words could garner a successful social interaction. I was (and in some ways, I still am) always acutely aware of having to “perform” when interacting with others. With masking comes having to deal with the mental exhaustion and anxiety of not slipping. If I were diagnosed younger, maybe I wouldn’t just be bottling up every social and sensory discomfort. But, the casualty of not having a “label” or understanding of what you’re feeling until adulthood, is realising the younger version of yourself that might have been.
Beyond a label: Giving myself permission to exist
Now that I’m a few years removed from being diagnosed with autism as an adult, my relationship with my disorder has shifted in subtle ways. When I was first diagnosed, especially during the earlier months, I’d get a certain tinge of euphoria when reading about symptoms, masking, and special interests – as finally putting a name to some “shameful” aspects of myself made me feel seen and validated at long last. I suppose that’s a side effect of not being conscious of such a crucial part of yourself for most of your life. It feels like being offered a lifeline after years spent desperately trying to tread water.
With time, I’ve gained a greater understanding of what Autism Spectrum Disorder means to me personally. I recognise that while it’s an important aspect of who I am, it doesn’t define who I am entirely. Although I find comfort in my official diagnosis, I now place more value on being able to understand and manage myself over getting an official “label.” In fact, I’d spent several years being mistakenly diagnosed with Bipolar Disorder which, I’d like to think, meant professionals knew there was something up with me, but they just didn’t know what.
It’s always the darkest before the dawn
While I did enjoy some friendships throughout my childhood, up until probably high school, maintaining them was an exhausting aspect of my life. I wanted desperately to fit in, but I couldn’t shake the feeling that something was “off” about me. There always seemed to be some unspoken rules to existing that everyone knew, except me. I had to be alert constantly when talking with others (even close friends), as I was still learning to pinpoint the parts of myself that were different and to navigate them.
As I had a lot more little tics and stimming (self-stimulating) behaviours when I was a kid, I grew to often resign myself to being alone in order to do them without drawing attention to myself. These repetitive behaviours did, however, manage to sneak out of closed doors; a particularly intense period of tics required medical intervention and caused me great distress, as I was seemingly unable to control myself. Since my diagnosis, I’ve forced myself to become more comfortable with these behaviours in public – meaning I no longer scold myself when needing to repeat things I hear and see on TV.
I’ve also found that being able to share my diagnosis with friends has brought me closer to them in ways I never realised I could. The fact that people in my life can (and are willing to) understand the ways in which I may operate differently certainly eases the stress of feeling like a burden on others. Small things, like a friend who turns my typically one-sided conversations about my special interest in films into a two-sided one, make all the difference. I’ve come to embrace my differences and the existence of my obsessive interests such as movies (I’m even managing to get paid to write about them!).
Getting diagnosed with autism as an adult has given me a new lease on life. I’m learning to not see myself as just a weird kid who was unhealthily obsessed with Judy Garland for a period in her life. Discovering yourself is a vital journey to existing honestly, and I for one am glad that I’m alive to see it come to fruition.