Illustration by Marcelina Jagielka
I am disabled. I wrote that out and had to pause for a moment – to catch my breath, in a way – because it isn’t an easy thing to admit to myself; it feels different from saying I have a disability. It’s an essentialist claim: I am something. It is something which defines me. Having a disability sounds far more temporary: you can have something for only a while whilst ‘I am disabled’ feels permanent. In many ways, it is more accurate; I am going to spend my life disabled. It’s inconsistent for me to prefer “I’m autistic” to “I have autism’ for conveying the permanent nature of my autism whilst hating “I am disabled” for describing the exact same permanence. If I was back in a first-year logic class, I could note that, as autism is a kind (subset) of disability, by saying I am autistic I am saying that I am disabled. And I know this is long winded but, the point is that, whilst I know I am saying the same thing, they feel vastly different.
Coming to terms with my diagnosis meant a period of mourning. Originally, I thought I had done it in a day, but it soon became clear that wasn’t the case. The economics part of my degree has taught me that there are always trade-offs, and my diagnosis came with one: understanding in exchange for hope. A more histrionic side of me believes that part of me, albeit a small part, will always be mourning the lost hope for who I could have been. My vision of my myself and future self has had to change, as have the emotions around who I am. ‘Spiraling’ is the word that comes to mind, the consequences seem to reach out in barely explicable ways that I can only just begin to understand, in many ways for the good- but some for the worse. Some of lies I told myself I can’t tell anymore: Everyone does not feel this way; It isn’t just part of growing up and I won’t grow out of it, no matter how much I want to.
The constants in my life are now death, taxes and autism. I’m static. Darker parts of me whisper that I’m stuck, not static: I will always be this way. And I don’t think I want to be. So many traits that I’ve spent years lambasting myself for are traits that will be with me for the rest of my life. The ease at which I get overwhelmed by groups and noise isn’t going to fade away with age. There will always be moments on busy streets or cramped corridors where the world feels like it’s swirling around me and I choke on words that I can’t form. Since secondary school I’ve longed to be a part of a large friendship group: we would hang out altogether, have parties, go to the pub. The moments where I’ve come closest to this I’ve had to run away, sometimes figuratively and other times literally. Do you know the frustration of wanting something so badly for so long and then ruining it for yourself every time it’s within reach? I don’t want to deny that the idea of being static terrifies me: all the anxiety, the confusion, the rules and restrictions I place on myself are things that I’ve been desperate to change about me. Over and over, I’ve wished I could just let go, that I could just be like everyone else. It’s felt like the resistance has been turned up in my life, so small things morph into big difficulties.
But I’m happier than I’ve been in a long time. It’s infinitely easier to be kind to myself and my past self now. I have an explanation for so many things and I’ve had the guilt lifted from my shoulders; it’s not my fault that I feel senses so strongly and it’s not my fault that I’m compelled to follow arbitrary rules of my own creation. In some ways, the hope that I’ve lost has been replaced. I’m hopeful about the support that I will now receive (Extra time for finals? Yes please). More than that I’m hopeful that the world will become kinder to autistic people and maybe I can play some small part in that. The people around me who have been subjected to my monologues have definitely learned a few things about autism. The things that I wanted, I’ve realised, are things that I thought I should have and should want. The truth is, I’m very happy with friends that I see one-on-one or in small groups. I prefer having fewer close friends to more friends who I am less close to. There are ways to minimise sensory overload – noise-cancelling headphones are very helpful for instance. Perhaps most important of all, being diagnosed has helped me understand and accept myself. There is nothing wrong with being autistic; the more I learn about how different traits and behaviours are linked to autism, the more that I like myself. I’ve been conditioned to think that I need to be a certain way and I’m starting to free myself of that conditioning. It’s a good feeling.
The first draft of this was written very soon after being diagnosed. I wrote that if I was given the choice to be neurotypical I would take it. That’s not true anymore. Just because the world is designed for neurotypical people, it doesn’t mean that I or anyone else should be neurotypical or hide our neurodivergence. Society should change for us and not us for it. Being autistic is an intrinsic part of me. I don’t know who I would be or what I would be like without it. And I like me, at least most of the time, nowadays.
The third part of my degree is politics (yes, I’m a PPEist, sorry about that). From a certain angle, this doesn’t make sense. I hate confrontation and arguments and I find a lot of political disagreement emotionally exhausting. But from a different perspective, it does make sense: my existence is political. I’m a queer, disabled women. I exist as a marginalised group within a marginalised group, like a Russian doll. I am afforded the privilege of being white and get to move around with the ease that comes with that. I also sound pretty middle class most of the time – especially by Welsh standards – and that affects how people treat me. I have low support needs and I’m very lucky to have this column as a platform. What I meant when I wrote I wanted to be neurotypical was that I wanted an easier life. I still do. I want all neurodivergent people to have easier lives. That’s going to take work. I’m privileged in so many ways, if people won’t listen to someone like me then I wonder what hope there is for neurodivergent people with less privilege than me. So, for now, I’m giving up on having an easy life. I want change and I’m going to do whatever I can to achieve that.