Being Autistic feels very lonely, because I’m existing in this world that isn’t made for me.
I only got diagnosed when I was 18. So I spent 18 years of my life feeling like I was different but not knowing why.
I feel like I’m functioning on a different wavelength to other people. There are all these unwritten social rules that everyone seems to intuitively understand except me. It’s like everyone else has been given this instruction manual at birth which I didn’t get.
I have had to teach myself how to exist in the world. At a very young age I realised that people didn’t like me being how I was. So I started observing people and copying them so I could be accepted – this is called masking.
But the thing is, even with all the effort I put into appearing ‘normal’, I still wasn’t accepted, people still thought I was weird or rude or annoying and they bullied me for that. It meant that I didn’t have many friends.
And the masking is absolutely exhausting. It’s like I can never let my guard down, for fear of giving myself away. And it’s had a massive impact on my mental health. Masking for so long led to Autistic burnout. I can no longer cope with being in the world the way I could before.
Existing is just so tiring for me. The everyday things that most people do without thinking about, I have to put so much energy into. Like talking, every time I open my mouth to speak, my anxiety levels go up, even if it’s the most trivial thing.
And in a single conversation there are so many things I have to consciously think about, which just come naturally to other people. I have to think about making enough eye contact, doing the right facial expression, holding my body in the right way, talking at the right speed, leaving the right size gaps in the conversation, speaking at the right volume, using the right tone of voice, using the right words for the situation….. And then on top of that I have to then interpret what the other person is saying as well and understand their body language etc.
So there’s a lot going on in my head all the time. And I’m always so anxious of coming across as weird or rude or annoying. I go over scenarios over and over in my head trying to work out if I made any social mistakes, or trying to understand what someone meant, if they used vague language for example.
The world is a very scary place for me, because of all this social pressure and also because of all the sensory input. I experience the world more intensely to other people. I get sensory overload from lots of things but the worse one for me is touch. I can’t wear short sleeves because I feel like I can feel every single molecule touching my skin. It’s like every nerve ending in my body is firing off all at once. It makes me feel very anxious and unwell.
Over the years people have doubted my diagnosis and dismissed my struggles because they think I have ‘mild’ autism. My autism affects me every minute of the day. Just because you experience my autism mildly, it doesn’t mean I do. In fact the only reason you are able to experience my autism mildly is because I put so much effort into masking. My whole body could be screaming inside, completely overwhelmed with anxiety, but I won’t show it. That is not a good thing though.
I shouldn’t have to mask. I should be able to just exist in the world, authentically Autistic, and the world should be okay with that. They should accept me for that. But they don’t. The world is prejudiced towards Autistic people.
My autism is disabling to me. It makes life very hard. But I have become better at communicating and expressing my emotions. This means that people in my life understand me better now, and that makes things a bit easier.
And there are some things I like about being Autistic, or that I am good at because of my autism.
I am extremely empathetic. I feel things very deeply and I am very sensitive to other people’s emotions. This can be overwhelming, but I like that it makes me caring and kind and accepting of people.
My autism also makes me very passionate about certain topics; these are called ‘special interests’. One of mine is the environment and climate change. I love how much I care about it. It makes me different to other people because I actually try and do something about it.
I also notice all the small details in things that other people don’t see. This can be very overwhelming, but it makes me good at maths and music because I see patterns that others don’t.
I see the world differently, I see solutions where other people don’t and I am very passionate about my values and how I think the world should be.
My autism is a part of me, and is not something that can be separated from me. I should be able to wear my autism with pride. But for that to happen the world needs to stop punishing difference, and start embracing it.