This week was my birthday.
Not my real birthday as in the day I emerged into the world, twenty three days late and pretty mardy about it; that’s back in September.
But this day is my real birthday in another way. On Monday was one year since I was diagnosed with Autism Spectrum Disorder.
I’m sure it probably seems weird to celebrate a diagnosis, but hear me out.
I have spent my whole life knowing I was different, but not being able to put my finger on it. There were certainly parts of my personality and interests that were different from many of the other kids – nerdy, book obsessed, awkward, not remotely interested in fashion – and a regular target for bullying. I managed to get through school and university by surrounding myself with like-interested people, good kind people who didn’t mind that I was a bit odd, or even better, cherished it.
It wasn’t until I was 27 that a friend of mine was diagnosed with Asperger’s that I started realising this was probably the missing keystone. This friend and I have long joked that actually we must have the same genetics, as we both have non-epileptic seizures, wonky joints, an insensitivity to gluten, anxiety in all the same places… and it was only when I looked into Asperger’s* that I realised it was me.
That realisation was really freeing. I had a name for my differences, for how I saw the world, how I experienced it. And I immediately stopped beating myself up about it. Once I got the final stamp of approval pictured at the top, the last vestiges of attempting to remodel myself as a neurotypical person flew out the window. I’m autistic, I’m different, and that’s actually really cool.
I also looked extremely cute this week tbh
It is not a panacea, of course. Being autistic isn’t all super awesome, as it comes along with a bunch of comorbid conditions, both mental and physical health. I still have the hang ups, the trauma, but I genuinely care less.
I used to celebrate November because (and this is going to sound weird) it was when my seizures came back after my last trip to the Philippines. This marked a seriously dark time in my life where I realised I had to give up diving, but being the person I am, I refused to let myself slip into that place, got a job at a marine focused charity in London and carved out a new life. That is what I used to celebrate, the refusal to let my body get the best of me, remembering that each change to my life is an opportunity for something new.
I’ve now switched it over to my Autism Diagnosis, but essentially the reasoning is the same. I found something new out about myself. My life changed. But I still have control of it. It is still very much my life and I’m in the immensely privileged position to be able to live as I do.
What has changed in the last year?
I got Nerys! She’s my little daemon and also my emotional support dog. In the UK, this type of service dog has no legal recognition but they are a big deal in America, so I hope one day in the future they’ll be recognised. Basically, she goes everywhere with me, she helps me feel less anxious, she reminds me to look after myself by looking after her too. She’s helped me knock a big chunk of my anxiety about going outside out of the park (not literally) and means I go outside much more.
At 5 weeks old on the day we met and at 9 months old
I stopped being a bookseller! My health was making working in a bookshop very difficult and so it became unsustainable to continue working such a physically demanding job. I miss aspects of it every single day, which is why my social media has become so book intense.
I came out as nonbinary! This is something I have sort of known about myself forever, living in the space of not-girl and not-boy, but only having the word “tomboy” to describe it. In terms of the “I always knew” narratives of LGTBQ lives, while I didn’t know I was queer for a very long time, I have had what I now recognise as gender dysphoria for much of my life. But, it wasn’t until I started reading about autism, and how many of us are trans, the intersection of those two identities, that I realised that I was two for two.
I’ve been out-ish to some people in the past few years as I felt it out (admittedly, mostly only to other non binary people and Tim), but this year I started using the phrase more, talking about it more, told my sister and my parents. I’ve been thinking a lot about pronouns, and whether I ever want to masculinise my appearance to be a bit more in line with how I see myself. At the moment, I’m sticking as I am, feeling out my happiness in open about it. I’m considering buying a binder, though I’ve found that throwing out some clothes that would trigger my dysphoria has really helped. For now, sports bras do the trick and aren’t incredibly uncomfortable to wear.
I moved in with my inlaws! Tim and I realised that our rental situation was financially precarious and moved to the West London suburbs to live with his parents. We are incredibly lucky to be able to do this, and they’ve been really caring and kind to us. We both miss our old flat a lot, but I was waking up overstimulated every single day due three building sites semi adjacent to our building. It was the right decision, not least because now I get to see fields from my window.
I helped start a independent publishing press! Literally I’m never going to stop mentioning 3 of Cups Press, go admire our website and preorder our first book On Anxiety which publishes in January!! We are launching our second book on Kickstarter in early 2018 and submissions for our future books shortly after that, so follow us on Twitter, sign up for our newsletter and get ready for a 2018 of amazing new authors. I’ve got a bundle of other creative things that I can’t announce right now so I’m positively vibrating with secrets.
Writing it down… wow. A lot has happened. And you know what? I feel great about it. I’m feeling pretty proud of myself lately, so I say happy birthday to me.
* A little aside: in the UK, people who fit the Asperger’s criteria are now more likely to get an Autism Spectrum Disorder (ASD) diagnosis, but my report made it clear that I also fit the Asperger’s profile. Asperger’s has been integrated into ASD along with a couple of other conditions.
Got any questions? Ask them in the comments below and I’ll do my best to answer them there or in a larger Q&A type post.