Why I didn’t know I was autistic until 48 years old

What has emerged through the cracks of 2020

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Photo by AJITH S on Unsplash

It’s been a strange year to say the least. A disruptive year. But sometimes it’s the cracks forged by disruption that allow previously unacknowledged truths to emerge.

Discovering I am autistic at the age of 48 has been like that. Business as usual was about maintaining the elaborate construction that kept me affixed to the world. It took a pandemic and sudden removal from the world as I knew it to shake the foundations.

In March 2020 I went into the office one day and the next day was working from home indefinitely. Leaving aside the uncertainty wrought by ‘these unprecedented times’, I could not deny the relief. Relieved of the daily commute, the chaos of the workplace and when lockdown came, regular social interaction. Time expanded along with the space in my head. I exhaled deeply. I started to think. Really think.

I had the time and space to process relationship trauma I had been carrying around for a couple of years. I realised that rather than bouncing back, I just hadn’t properly dealt with it. I began to relive a good deal of it, not as flashbacks so much as my mind grasping to make sense of what I had experienced. Interestingly, my Google-facilitated exploration kept on telling me that my ways of perceiving, understanding and communicating in relationships were also experienced by autistic people.

This was not the first time the autism connection had been made but it was the first time I had stopped and taken it seriously. At one stage during the aforementioned relationship, I was asked “honey do you think you might be on the spectrum?”. At the time I dismissed this as coming from her tendency to frame me as rigid and controlling and this in turn framed my response. I remember saying something along the lines of: “Life is chaotic and it makes me anxious. I plan and make lists because it gives me a sense of predictability and structure. I know I have issues with sensory processing but it’s worse at the moment because my anxiety is ramped up.” If I’d had time to think, I could have added other things such as my struggle to be heard and understood. Or maybe that was still a way off.

I wasn’t in denial. In fact, it was in a quiet moment around that time that I made the initial foray into Googling autism. I can’t remember the search terms but they must have been specific enough to yield a number of articles written by autistic women. Women who were like me. I kept nodding my head as I read about each experience of an autistic woman navigating a neurotypical world. There was one article in particular that was basically describing my life. I wish I’d saved it. The evidence was mounting but by this time I was operating in survival mode and didn’t have the bandwidth to deal with it. So I pushed it aside.

It turns out that there were a few things working against me figuring out that I was autistic. One reason it hadn’t occurred to me was that like many people, my understanding of autism was driven by stereotypical portrayals in the media and popular culture. I had also internalised various myths about autism: that autistic people lack empathy, don’t have highly developed language skills, have ‘black and white thinking’ or are literal thinkers and are are very good at maths, science and technology. As none of these myths applied to me, they had worked against me identifying autism as an explanation for my struggles.

The diagnostic criteria for autism has historically been skewed towards typically ‘male’ autistic traits. Not only has this resulted in less girls/women being diagnosed with autism relative to boys/men; it has also shaped the way autism is understood in the general community.

That’s not to say that the differences are inherent biological differences or that there is a clear binary distinction. Autism tends to present differently in women and girls largely due to the pervasive effects of social expectations on how we see our place in the world. Compared to men, women are under more social pressure to act in ways that prioritise relatedness to others and so work harder to fit in. Mimicking the behaviour of other girls can seem like the way to blend in and gain acceptance.

It is widely considered that girls tend to internalise the experience of autism more so than boys. Without the outward signs, girls are less likely to be identified as different let alone autistic. This was certainly my experience. I had a strong sense of being on the outer but it did not occur to me to talk to anyone about it. I couldn’t describe to myself what was going on, much less verbalise it to an adult. I had no wish to draw any unwarranted attention to myself and coping meant blending in to the point of invisibility. No surprise that much of my early life was lived in my head.

For someone growing up in rural Australia in the 1970s and 80s, autism was simply not on the radar. It wouldn’t have occurred to anyone that there was a medical explanation for a child who was somewhat unusual but didn’t generally cause any trouble. My sense of being different was to a large extent explained by the realisation as a teenager that I was gay, which was at that time akin to being from another planet. My inability to find a neat fit in the LGBTIQ community tended to suggest that being gay wasn’t the full story.

Fast forward to 2020 and middle age. Why was the possibility that I was autistic still eluding me? I had achieved a measure of social acceptability: study, secure professional employment, a long term relationship and a child. Although these things had their challenges, they had also provided me with a sense of belonging and legitimacy. I felt as though I was at least participating in the game of normality. These things were a protective scaffolding to what might otherwise have been a chaotic and disorienting experience of life. But they also served to obscure the possibility that there could be something else going on.

Even as I was starting to consider the possibility that I was autistic, I would come across examples of autistic people who my brain quickly screened as “not like me”. After watching “Love on the Spectrum”, I temporarily shelved any idea that I might be autistic. I appreciated the much-need representation of autistic lives on the small screen. But I couldn’t relate to their experiences and it was not what dating looked like for me.

This is less a criticism of the program and more a demonstration of the diversity of autistic people. I hadn’t yet realised how highly distinguishable autism is. As my psychologist later reminded me: no two people with autism are the same. The interaction of autism with personality, life circumstances and other factors means that autism presents in an infinite variety of ways.

I felt that I had come full circle when those articles by autistic women came up again in my attempt earlier this year to understand my relationship issues. The more I read, the more I became aware of the huge diversity of autistic experience. There was no pushing it aside this time. I was about to enter a period of deep self-reflection and discovery unlike anything I had experienced.

I read articles and books, joined Facebook groups, listened to podcasts and subscribed to YouTube channels. I recognised myself over and over. I heard people explain aspects of my existence that I had never previously heard articulated. These were my people and they made sense to me in a way that “neurotypicals” did not.

I began to understand why I need clear and precise communication; why I become agitated after too much sensory stimuli and why I am so much better with one-on-one interactions. So many things were explained and I was excited to find a framework to help me understand myself and my life. I felt the emergence of pride in having a brain that was wired differently.

It was a revelation to me that many autistic people go through life passing as neurotypical, despite experiencing life in a profoundly different way. The phenomenon of ‘masking’ goes some way to explaining why many people, especially women, don’t get diagnosed as autistic until later in life. Masking has been recognised in the DSM-V diagnostic criteria, making it a core element of autism.

Masking refers to the various coping mechanisms autistic people use to survive in a neurotypical world. It is essentially “pretending to be normal”. These behaviours are often unconscious and over time become inseparable from a person’s identity. When someone realises they have been masking, it can be hard to separate the masking behaviours from ones ‘true self’. I would explain the way I mask as putting forward a version of myself that I have cultivated to meet what I believed was expected of me. I am still trying to figure out how, and to what extent I can undo this. It is a complex process.

I always had a sense that things were harder for me than for other people but I had dealt with this by trying harder, struggling and absorbing the stress and anxiety that went with it. As with many autistic people, I lack intuitive understanding of social relationships so have compensated by trying to make sense of things on a cognitive level. I have endured many awkward social interactions and daunting social events. Sometimes I have felt perplexed and exposed for days afterwards.

Coping didn’t mean making allowances for myself but pushing through. If I needed to put in extra effort to be like other people and have the lives they had, so be it. It was exhausting and it wasn’t sustainable and chances are it was never a complete cover anyway.

I started to become aware of the mechanisms involved in masking at the same time that I was relieved from the many obligations in life that required me to do it. I believe that my capacity to mask had been breaking down and I was fortunate that I had a soft landing rather than the painful one I may have had if my life as I knew it had continued. Finally, I took the first steps towards the diagnosis process which would result I me re-evaluating my life and how I saw myself.

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