When you’re living with undiagnosed autism, you learn to put on a mask most of the time. It’s a survival tactic; literally, sometimes. The consequences of the mask slipping are too much to bear. You are ostracised; humiliated; shamed.
So I learnt the ‘right’ words to say; the ‘right’ noises to make. I learnt to agree to things and with things, even when that wasn’t in my best interests. I observed and mirrored behaviours of other people and turned them into (almost) my own. Unfortunately, I didn’t always choose the right people to observe and mirror, but that’s another story.
And in doing this, I lost sight of who the person behind the mask actually is. Who I actually am.
It’s been just over a year since the mask finally cracked, and almost a year since it broke entirely. Almost a year since the world that I knew, that I was comfortable in, came crashing down around me.
And if that sounds dramatic, well, that’s because it was.
It was probably the most horrific time of my life. I didn’t know what was happening to me. I couldn’t think; couldn’t breathe; couldn’t stop crying. It didn’t feel as though it was ever going to be possible to resume a normal life.
Then I got my diagnosis. And it quickly became clear that what I thought of as my normal life had gone for good.
I’ve had to work out who I actually am, now I can’t simply hide behind the mask that protected me from the world for 36 years. I’ve had to try different strategies – not to hide, not to pretend any more, but to cope in a world where I increasingly don’t belong and don’t fit in. I’ve had to – very quickly – not only accept but develop an in-depth understanding of a condition that a year ago I knew next to nothing about and that some days I would give anything not to have. I’ve had to learn how to be my own advocate, and how to accept help.
I’ve also had to fight against being put in a box labelled ‘autistic’. I’m still fighting, sometimes, to retain my autonomy as an individual. It remains hard to explain to people that I have this condition and that’s why my behaviour may sometimes seem strange. And it can be absolutely heartbreaking to hear the change in their voices when they find out – the well-meaning condescension; the sudden switch to talking to me as though I am a small child – or, even worse, talking about me and assuming I have nothing of value to contribute. Nothing could have prepared me for that.
I still don’t know who the person behind the mask is, really. I don’t think I’m a good person, or a strong person, or particularly clever or funny. I try to be kind, but suspect I don’t usually manage. I don’t think people like me much. I can’t really blame them.
Now, what I need is some stability. Somewhere to plant my feet. Some way to get through the next year quietly and without further damage; somewhere I can heal in peace. Some space where I can figure out what I do next, rather than just having to fight and react to what life throws at me.
I don’t know whether I’m going to get that. I do know that, even if I don’t, my only option is to keep on going, however difficult I find things at times.
I’m so tired now. I need to rest, mentally and emotionally. I need sympathy and kindness, too, and I’m not sure I can provide that myself.
But I have some sort of resilience, at least. Somehow I’ve got through the last year, when sometimes I didn’t think I would. When I couldn’t see a way forward. When all I wanted was to sleep and not wake up again as it was all too hard, too painful to deal with. At some point I hope it will get easier. And I’m still stubborn enough not to just give in.