Siena Castellon shares what it feels like to be the invisible autistic girl and what you can do about it
Unfortunately, there are still lots of stereotypes and misconceptions about autism, especially in relation to autism in girls. When I tell people that I’m autistic, they frequently express disbelief. I’m often told that I don’t look autistic or act like someone who is autistic. I still haven’t come up with the ideal response, in particular because these comments imply that there is something wrong with being autistic. Let me be very clear: I like being autistic. Autism is an integral part of who I am. It’s not something that I’m ashamed of. On the contrary, I embrace my autism because my autism and learning differences make me me.
To my classmates, teachers and acquaintances, I can appear conventionally normal. I can make friends and be sociable. I’m well behaved, intelligent and have a sense of humour. In their eyes, I don’t exhibit the behaviours commonly associated with autism. I appear to make eye contact (I actually look at people’s foreheads). I don’t have meltdowns or hit myself or others, and I don’t drone on and on about esoteric interests. I defy their understanding of what autism is and what autism looks like. However, as you and I know, appearances can be deceiving.
Despite outward appearances, inside people with autism are very different. I’ve always known I was different. Social interaction doesn’t come naturally to me. Whereas other children automatically developed and absorbed social skills while frolicking in the playground, I studied people the way others might study a foreign language. Without knowing it, I became a social anthropologist and an actress. I studied social norms and rules, I mimicked behaviour and scripted conversations so as to appear ‘normal’ and to fit in. Yet, no matter how hard I tried, I couldn’t avoid making embarrassing social blunders. I always felt that I was on the outside looking in.
I was diagnosed as being autistic when I was 12. I count myself lucky to have been diagnosed at a relatively young age because I have met lots of women who weren’t diagnosed until well into their 40s and 50s. My diagnosis was welcome. I had spent my entire school life being rejected and ostracised by my classmates, and I was beginning to believe that I was unlikeable. My autism diagnosis finally gave me the answer as to why I’m different. Autism, a six-letter word, explained everything.
Another benefit of finding out that I’m autistic is that I stopped feeling isolated and alone. I took great comfort from knowing that there are other people out there who are just like me. People who understand me and accept me for who I am. Since my diagnosis, I’ve been fortunate to meet many amazing autistic people. Whatever our differences, we’re kindred spirits. We share a special connection, a bond forged from knowing that no one else can truly understand what it’s like to be autistic.
As soon as I was diagnosed as autistic, I began to research autism. I scoured the internet for information and read books, articles, blogs and studies on autism. What I learned was a revelation. I learned that the little I had previously known about autism was wrong, especially in relation to autism in girls. For the first time, I realised that my social communication difficulties, my sensory sensitivities, my anxiety, my insomnia, my stomach problems and my poor coordination were interconnected. I also realised that not everyone perceives and experiences the world as I do. For example, I learned that not everyone sees numbers the way I do. To me, numbers have personalities. Each has a colour and smell. I can visually flip, rotate and shuffle them. This is a condition called synaesthesia, which is common in people who are autistic.
I also learned that one of the reasons girls are less likely to be diagnosed as autistic is that we’re really good at hiding our autistic traits. In fact, we become so good at pretending to be ‘normal’ that we convince everyone that we’re neurotypical. Eventually, the constant pretence and heightened state of anxiety becomes too much for us to cope with. This can have a negative effect on our mental health. Some of us develop eating disorders or obsessive-compulsive disorder (OCD), some of us begin to self-harm and many of us become depressed. It is usually at this stage, when we have hit rock bottom and are crying out for help, that people start to put the pieces together and that our autism, which has been hiding in plain sight, is finally recognised.
Not everyone embraces their autism as quickly as I did. For some autistic girls, it’s more of a journey. The idea of being different can be scary and overwhelming. It can also feel unfair. You may wish that you could be like everyone else. You’re absolutely entitled to feel that way. I’ve felt that way at times too, especially when my sensory sensitivities are wreaking havoc on me or when I’m being bullied. If you’re still struggling to come to terms with being autistic, I hope that my book helps you to see that you’re no longer alone. You’re part of a tribe who know what you’ve been through and who see you and accept you for who you are.
Edited extract from The Spectrum Girl’s Survival Guide: How to Grow Up Awesome and Autistic by Siena Castellon, illustrated by Rebecca Burgess, published by Jessica Kingsley Publishers.
First published in issue 66 of JUNO. Accurate at the time this issue went to print.