Hello folks. It’s currently 01:35am and I can’t sleep. I have been listening to Lil Nas X’s album, Montero, on repeat for the last 3 days and I was not expecting to react quite so strongly to it. I’m going to be honest, I’m a bit of a mess at the moment, although my girlfriend has at least reassured me that I’m a hot mess, so I’ve got that going for me. It’s my final term at uni (yes, even though it’s autumn – long story!), and I’m struggling to get through it. Work plus a load of personal stuff I am trying to get through means I’m constantly stressed, to the point where I am becoming quite ill from it, hence the absence posts in the last month. Please be patient with me while I claw my way through this final term, and hopefully in the new year I will be able to focus on doing things I actually enjoy, like going a day without crying, writing borderline obnoxious posts on the internet about my thoughts, and of course, spending hours reading about dinosaurs.
Today I wanted to talk a little bit about identity, specifically identity as a disabled and/or autistic person. Identity is really bloody confusing, let’s just get that out of the way. On the one hand, labels can be really helpful as it can help you to understand yourself and make sense of who you are. On the other hand, they can feel limiting or constrictive. I personally am slightly hypocritical when it comes to labels. I very proudly label myself as autistic, as gay, as cool-as-heck… to name but a few. And although I use those words to describe myself openly, I dislike using certain labels for myself. For example, I don’t like the term Aspie, both because I wasn’t actually diagnosed with Asperger’s Syndrome, and also because of the whole Nazi thing. I also usually only use the label lesbian if it fits best in whatever dumb joke I am trying to make, as the sound of the word is unpleasant to me.
Perhaps these can be attributed to certain linguistic preferences of mine rather than a general dislike of labels. I still use equivalent terms to describe myself, and I certainly put myself in those boxes, where I sit quite snugly. I enjoy having a word to describe a particular aspect of who I am, as it helps me to make sense of complicated matters such as who I have the potential to fall in love with or how my brain is wired. That being said, those labels didn’t necessarily bring me comfort right away. That’s what I wanted to talk about today: how I felt when I was diagnosed with ASD.
If you want to get up to speed with my diagnosis then I suggest you read the post Is Marriage A Scam? before coming back to finish this one. Having that word, “autistic”, simultaneously provided me with a giant sense of relief, and a sinking feeling in the pit of my stomach. The relief part is explained in the linked post, but the sinking feeling? That one is more complicated.
I was diagnosed at 17, a year after I came out officially to my family. (For the story of how I realised I was gay, please read Germany Made Me Gay) At the time I was also struggling a lot with my mental health (surprise, surprise. An undiagnosed autistic woman was having a hard time. How novel), and I was already feeling very different from the rest of my family and friends. And while I needed to know why I was struggling with certain aspects of life, having that word “autistic” being officially put on my records felt as though someone pushed me against a wall, wrote “outsider” on my forehead and then kneed me in the chest for good measure. I felt different and alone. It felt as though it was yet another thing that separated me from those in my life that I loved. I would have given absolutely anything at that time to be neurotypical, straight, and mentally healthy.
It’s strange because now I wouldn’t ever want to be non-autistic or straight, but at the time I desperately wanted to feel more like the people around me. Don’t get me wrong, I had a lot of queer friends and a lot of neurodivergent friends as well (plus it was a grammar school so obviously almost everyone was under some sort of stress-induced mental health problem), but I felt as though I just had too many issues for one person. I felt intense guilt about being “the problem child” of the family and worried that my parents would eventually stop caring, or that my siblings would resent me for taking up too much space and time. I worried that I would negatively influence my siblings, something I desperately wanted to avoid. I love my siblings fiercely and I would far rather take on 4-people’s trauma than have them suffer any, so the idea that I could be a source of sadness for them was really scary. I didn’t want my relationship with my parents to suffer and I was convinced that being certifiably different was just going to drive a wedge between us, as though they would reject me from the family and I would be forced to stand on my own in the family Christmas card.
Clearly I have yet to be cast aside by my family, and with time the anxieties have lessened. I don’t worry so much about my family or friends anymore. A combination of open conversations, therapy and meeting more people like me have slowly helped me to find more peace with who I am. I hate not understanding things (unfortunate given I’m doing a Maths degree, a subject which is notoriously difficult to understand), and so before my brain understood that people will still like me, I really struggled with my own self-worth because I wanted nothing more than to change who I am. And that, my friend, is both not possible and unbelievably unhealthy.
I think the reason I have been thinking so much about how I felt back then is not just due to listening to “Sun Goes Down” from Montero, but because of the predicament I find myself in currently with the university. There will be a whole other post about being autistic at university, but that will have to wait until after I have escaped left. The long and short of it is that I am struggling and the university is not helping or providing the accommodations I need and am entitled to. I am having to do an extraordinary amount of chasing up and compromising and am now slowly dying inside because of it. And the reason this has brought up all the old insecurities is because it has made me start questioning whether or not I actually deserve the extra help. I know that I am disabled, I know that my disability, autism, means I require more help than non disabled people and I know that both morally and legally the university should be helping me, and yet there is the voice at the back of my head that asks the question “but what if you don’t deserve it?”
I worry that I am blowing things out of proportion. I worry that I’m being lazy or that I should just “try harder”. I see other people finishing their degrees with minimal problems and I get frustrated at myself for not being able to do the same. And I know how hypocritical it is. I know if someone came to me and told me exactly what I am telling you that I wouldn’t agree with any of their worries. I would tell them that they aren’t blowing things out of proportion, that they aren’t being lazy, that they cannot possibly try harder and that other people don’t live their life so they should have no baring on how they feel about themself. And even though I know all of this, even though I can see quite clearly how illogical it all is, I can’t make my brain believe me because fundamentally I am still questioning my right to exist as I am, unapologetically different.
I don’t really have any concluding point to this. I just needed to vent and I thought that this must be a not uncommon thought for other autistic people, and so perhaps someone would find some solace in reading my thoughts. I know this period will pass. I’m 100% sure that when my brain lets me fall asleep, I will wake up in the morning, read over this, and think “bloody hell, Sarah. You need to take a chill pill.” And I’ll make some light edits, think about whether or not to post it, and do it anyway because that’s what this blog is for. Being autistic is great and I am so happy I am diagnosed and I am proud of who I am, but it doesn’t change the fact that I am a person with feelings and emotions and insecurities, all born from past events that have shaped me into who I am today. And who am I today? I am a gay, autistic, mentally-meh human being who is a hot mess right now but will eventually just be hot. And I love that for me.
Sarah
I Don't Look Autistic 