In my previous articles, we’ve spoken at length about how I’m impacted by the various side effects of my autism: being alexithymic; having to mask; struggling to make friends; and  needing  exam support. However, this article is different; it’s about the label itself. How does it make me feel when I say ‘I’m autistic”? The answer is I rarely ever say it. Saying those two words is really difficult for me and always has been. While I’m comfortable writing it down, I’m still not comfortable speaking the words. I’ve instead said to people that ‘I have autism”, but this feels unsatisfactory. Saying it that way makes it seem like my autism is something distinct and separate that can be cured or controlled, but it can’t. It’s part of me, and I wish I found it less hard to express that. Sometimes, it’s not the side effects of the condition but the label itself that makes me feel most upset. Why is this the case?

The first reason dates back to my time at secondary school. At lunchtimes, I would regularly have to hear groups of boys say “that’s so autistic” to one another whenever somebody did something stupid. Clearly meant as an insult, the behaviour that earned this comment had nothing to do with autism, and could range from saying something outrageous to accidentally falling over. The only time I ever got angry at one of my own friends was because they said this to somebody. It made me feel like I was stupid or somehow worse than everyone else. But it wasn’t my friend’s fault; so many people said it that I don’t think they even knew how upsetting it was. It became a self-fulfilling prophecy. Somebody used it as an insult, so that I didn’t feel comfortable telling people I was autistic, meaning that to everybody else, autism continued to be understood by its stereotypes, meaning that the insults carried on. This vicious cycle made me feel like being autistic was something to hide. If ever you hear someone using “autistic” as an insult or as a joke, please tell them to stop. 

Having the label makes me feel different from everybody else. Despite the ill-judged remarks about Oxford being a place where everybody’s on the spectrum, university life (and the wider world) remains an experience built by and for neurotypical people. It’s not because I am autistic that I don’t drink, don’t go clubbing, don’t stay up late and don’t socialise with absolutely everyone; those behaviours are as much a part of my personality as my autism is. Yet for some reason, the label of “autism” makes me feel like I have to apologise for those behaviours. This is a view I need to work on, and remove from my mind as soon as possible.

How important can this be? Is my life really that badly impacted by the fact that I can’t say I’m autistic? The short answer is yes. The longer answer is that not feeling comfortable to say I’m autistic makes my life significantly harder. The further I run away from my identity, the more difficult my life becomes. Doing an incredibly hard but rewarding PPE degree takes up a lot of my energy. Having to suppress parts of myself while doing this takes up even more. Because of my embarrassment to use the label, I feel embarrassed to indulge in my special interests, for fear that it will make me seem weird and more autistic. This means that when I talk to friends, I often say either nothing substantial or nothing at all, preferring just to talk about whatever’s going on in the moment, such as the food we’re eating, the tutorial we’ve just come from or the weather outside. If I was more comfortable saying I’m autistic, perhaps I’d also feel more comfortable talking about the special interests that make me the person I am. I’ve gotten better at doing this with some of my closer friends, but usually because I’ve found out that they’re already interested in something I like, so have brought it up in response to them asking. If someone new asks me what I’m into, I really struggle to answer. 

Struggling to say I’m autistic also makes me feel compelled to apologise when I don’t show an appropriate emotion, even though I sometimes cannot. The worst example of this was during the illness and then death of my great-grandmother a year ago. I felt so sad because I couldn’t cry in the way others could. This isn’t because I wasn’t sad; I was, and still miss her to this day, but I just don’t have the emotional range to be able to cry like that. This made me feel so much worse about myself during a time that was already so difficult for me and my family. I managed to find a way of showing my sadness; although I couldn’t naturally cry, I could help others around me, like making my mum a cup of coffee when she was sad. These acts were my way of showing that my heart cared even though my face couldn’t. I think that if I was more accepting of my being autistic, rather than my having autism, I would accept this as a part of me, rather than something that could be wished away and that needs to be apologised for.

So, what am I going to do about it? I feel more ready to embrace my identity now. That’s why I started writing this column a few months ago. Since coming to Oxford and getting on the path to a hopefully fulfilling career, I’m feeling secure enough to start trying to own my being autistic, and be proud of it. I want to be proud of it, not in a way where I pretend that I don’t experience significant drawbacks and challenges, but in a way where I accept and love myself as an autistic, not despite being autistic. It’s also helped that since coming to Oxford, I’ve met and made friends with other autistic people, who are really fun, friendly and kind, making me feel less alone in having the condition. I’ll not name them here, as that’s not my story to share, but if they are reading this, know how grateful I am for your existence, and how much calling you a friend means to me, not just for what we share, but for the fun we’ve had together. Hopefully, I am now on the road to being able to say “I am autistic” without the qualification of embarrassment.