Making sense of things: my autism diagnosis

Image description: a woman’s shadow on the floor.

Today I found out that I’m autistic. In many ways, I feel happy, relieved in particular. There is a name for my oddities and I’m not alone in having them. There are other feelings too: anger, frustration, some mourning. For two decades I have struggled, and for what? I could have been diagnosed so much earlier but no one put the pieces together. The representation and understanding of autism is too male, too unemotional, and I was too good at hiding my autistic traits. 

Having a diagnosis feels like I’ve lived all my life in Plato’s cave and now I get to leave it and see the world as it actually is. I make sense in a way I never have before. Everything has an explanation now — from years of disordered sleep, why antidepressants didn’t work as they should, my lack of a Welsh accent, my aversion to certain foods, and even the way I eat food. I’ve spent my life making myself uncomfortable in order to make others more comfortable. Through masking and mimicking, I was able to hide my autistic traits so well that doing it became an instinct, an instinct that caused anxiety and depression. Because I felt like I was faking. I remember being around 5 or 6 and realising that I was a different person if I was with one friend versus another and I didn’t know why. To my dad I described it as ‘having different faces’. My teen years were filled with anguish over who I was — if there was actually a ‘me’ or if I was just whatever people wanted me to be. I hated myself for it.

I’ve spent my life making myself uncomfortable in order to make others more comfortable.

Social situations have always exhausted me and I often put it down to introversion or social anxiety or told myself that everyone feels this way. The thing is, they don’t. The reason that social situations are so tiring is because every movement of my body, my tone, my word choice, if I make eye contact or not, is conscious. I expend so much energy trying to come across as ‘normal’, to hide and push away every autistic urge and sign. And then there is the constant analysis of what the people I am interacting with are doing. How are they speaking? What does their body language say? What are they thinking about me? It is difficult to focus on the content of speech when you actively have to decode body language, pitch, intonation, facial expressions, eye contact, and search for humour, exaggeration or sarcasm. 

All the processes that are intuitive and natural for non-autistic people are difficult and conscious for me. It is more draining than I know how to express. In many ways, I have lived a lie my whole life. I’ve made my voice and face more expressive, I’ve faked interests, hidden confusion and a myriad of other things. And I’m good at it. Frankly, too good at it. I wonder how much earlier I could have had a diagnosis if I hadn’t felt like I had to hide myself. Years of my life have been stolen from me and the impact on my mental health has been enormous.

It pervades every aspect of my life . . . the thoughts I have I have because I am autistic.

When I had my diagnosis, I was asked what the impact of being autistic was on my life. This was a strange question to me; I had received my diagnosis only a sentence earlier which itself was a lot to process. The real strangeness of the question, however, was the presumption that there are areas of my life that are not affected by my autism. For me, autism feels like a processing system, in the same way that Windows or iOS relate to computers. It pervades every aspect of my life because there is no moment where I am not processing some piece of information. Even on my own, I process my emotions through an autistic lens; the thoughts I have I have because I am autistic. My answer to the question was two words: “it’s exhausting.” 

Camouflaging myself every day is a Herculean task and I don’t want to do it anymore. The people that I love should have the opportunity to see me as authentically myself as possible. And I’m tired of pretending. Despite this, I am scared. It seems there are two options in social situations: I can mask and pay the price for it with my mental health, or I can not mask and try to face fears of rejection. That to me is terrifying. I’ve spent years trying to cultivate a version of me that is socially acceptable and not being her feels like being naked. I know that if I don’t modulate my tone I risk being seen as blunt, or if I don’t make eye contact I could appear disinterested. This is why I’ve tried to tell as many people about my diagnosis as possible and why I’m writing this — what is expected of me can be changed if people know I’m autistic. 

There is nothing wrong with being autistic: I see the world in a way that non-autistic people are not able to.

There was sadness with my diagnosis, a process of mourning really; all the things that I hoped would become easy are going to remain a struggle. As the saying goes, the only constants in life are death and taxes — but I will always be autistic. I will always function differently, a left-handed brain in a right-handed world. That is a hard pill to swallow. Yet I am happy. There is nothing wrong with being autistic: I see the world in a way that non-autistic people are not able to. There is power in that, beauty too. Autism commonly includes very high attention to detail and sensitivity to things like light, sound and touch. I literally experience the world differently to non-autistic people, hearing sounds or noticing details that others may not. There is no way for me to feel what it is like to be non-autistic and vice versa. 

I’ve realised that the moment when I tell people I am autistic is probably the closest thing they will ever feel to being autistic. They are presented with someone telling them something with no emotional cues indicating how they should react. Because most people know very little about autism, they are reliant on those cues. There seems to be mild panic and hesitation and I assume they are searching for the right words. That’s what it’s like all the time for me.

Image credit: Martino Pietropoli via Unsplash