Being diagnosed with autism as an adult

CN: cancer, autism

(So I was expecting this to be my first autism post, a more thoughtful kind of post, as opposed to my angry rant, but it’s taken me over a year to finish this, so, angry rant it is, then!)

I was diagnosed almost two years ago, at the age of 45. Why bother?, you might ask.

I’d been wondering for a while, a long while, years, in fact, if I was (maybe, maybe) autistic, or ADHD, or neurodivergent in some way. I haunted blogs, and read articles, and did online assessments, but I was never quite sure. Some things resonated, for sure, but I kept finding reasons why I wasn’t really autistic.

I didn’t stim, for example, except that one day I realised that I do; I just didn’t think of it that way. It’s not the classic rocking or hand-flapping, it’s twiddling my hair, tapping on things, twisting my fingers together. Humming. Clicking my tongue. Popping sounds.

I do get sarcasm, and jokes. Sometimes. Other times I think people are serious, and I get confused. I make jokes, but lots of people don’t get them, so again, confusion. I think one of the reasons it took me so long to recognise this is that my family mostly do get my jokes and sarcasm, and I get theirs, so it took me a long while to realise that this was less the case for those outside my family.

I do have an imagination: it’s not visual, true, but I write, and I draw and I paint (badly, but still), and I take photos and I used to make videos, but I kept being told that autistic people had no imagination. Even the person who diagnosed me told me this. I will admit that as a child I would usually play the same game/scenario with my toys if I was playing alone, so yeah, I’d agree that my imaginative play is perhaps limited, but not that I lack imagination.

And I will happily eat the same food for weeks, months, at a time. Listen to the same songs on repeat. I love routine, I just didn’t have all that much of it as a child, so I managed without it, just about, or rather I made my routine where I could. I’m happier with it, though.

Once again, and like with so many things in my life, it was my cancer that helped push me to get a diagnosis. My life is basically divided into before cancer, and after.

Before cancer, I kind of coped, more or less. I wasn’t good with people, but I had friends. Or rather, I’m not good at meeting people, and I have no idea how to go from “hi” to “wanna keep in touch?”. So mostly I have friends because other people have liked me enough to ask for my contact details. But once someone is my friend, I am okay at communicating with them, and I do genuinely like many people.

I masked, a lot. I think I’ve been masking my whole life. To the extent that I’m not sure what’s me, and what’s masking. That was compounded by being AFAB and socialised as female, so I was being taught to act in particular ways anyway, praised for being quiet and polite and not taking up space.

After cancer, well. Cancer was a wall that I hit, and nothing was the same afterwards. Which has overall been a good thing for me. I would probably not have pursued transition, or my autism diagnosis, without the cancer experience, which essentially boiled down to “life is short, why live in a way that makes you unhappy?”.

It’s been interesting since the diagnosis. I had some imposter syndrome to begin with, which was just weird. A lot of “am I autistic enough? Am I really autistic?” going on in my head. Since then, it’s been a gradual process of trying to figure out which things are my autism, and how it’s impacted me.

There’s been a lot of “oh, so now I understand that thing I do”, or “so that’s why this thing makes me feel weird”. It’s definitely been helpful, to look back over things and understand myself better. And it’s really helped to realise that I’m not the only one that does or feels or experiences a particular thing.

I’m following a lot of autistic content creators on social media, joined several groups for neurodivergent people, and it’s all been so helpful. Such a relief to know that I’m not the only one. A bit like when I realised I was bi/non-binary/ace etc and found a group of people just like me.

And getting a diagnosis was definitely worth doing for me. I have a better idea of who I am, of my strengths and weaknesses, and which things I can and can’t change, what accomodations I might need. The only thing I wish I could change is I would do it sooner.

It feels good to be able to say I’m autistic, to know there’s a reason why I struggle with the things I do, why I can’t do things that seem to come easily to others. It feels like when you shift the angle of an object in the sun, and suddenly parts of it are illuminated in a way they weren’t before: there’s nothing new there, but now you can see it better, differently.

And yes, maybe I could have just stuck with self-diagnosis, but truthfully, for me, that wasn’t enough. I would never have really felt able to claim autism (which is a me thing, I have no issues with other people self-diagnosing). That was a stage I needed to go through to give me enough confidence to go for an official diagnosis, but I personally needed more than that.

It’s part of my need for order, I think: I needed someone else to say it, for it to be real.

So here I am, #ActuallyAutistic. And still learning what that means.

© bardofupton 2021

This is how the world is (nonfiction)

The world is too much, and routines make it just enough. Safe enough, quiet enough, just enough, but break my routine and the muchness comes back, overwhelming, exhausting.

My life might seem boring, but it keeps me safe, stable, functional. Wear the same things, eat the same things, do the same things. Even the variations are routine: do this thing on this day, this week, this month.

Spontaneity is… difficult. I need to work myself up to socialising, and too much anything is tiring. And the world is lights  sounds people, and sometimes I can’t. Sometimes the anxiety I always thought was impatience is too much, and I know it seems rude but I just have to get out away NOW.

Sometimes my feelings leap up into my throat and choke me into silence. Other times it’s all I can do not to scream. Sometimes other people make my skin itch. Some days I just can’t, and yet I have to, have to get up and get dressed and go to work and people all day, and when I get home I’m done. Some weeks all I can do is work, and it takes everything to manage that.

And it’s hard to explain, hard to say that today all my energy is going into being good at my job, and I don’t have any left to be polite with. That I’m not chatting because I can’t, not because I dislike you or because I’m angry, I. Just. Can’t.

Sometimes I want to crawl into a dark corner, under a table, and just hide. Just be away from everyone. But I can’t, I don’t. I have to go to work and be productive even when it hurts. Even when it means I go home and I’m too exhausted to do anything. When it means I buy crap from the corner shop to eat because I can’t even manage to think about cooking, never mind actually do it.

This is how the world is. I have to fit to it, because it won’t fit to me. This is how the world is, and I hate it. I hate how hard it is, how hard it insists on being, even when it could be easier, could be better. I hate that I get to be the one with the problem, when the problem is other people’s expectations.

(Not entirely, of course, but a lot of it boils down to people expect certain things from you, which they never fucking explain, but they definitely judge the hell out of you if you fail to meet them.)

And I’m tired. I’m tired of having to fake normal, I’m tired of people saying one thing and meaning another and assuming that I’m doing the same, I’m tired of having to hold it together until I get home and I can fall apart safely.

I’m tired, and I’m angry, and I want it to get better, I just don’t know how. Which I guess is why I’m writing this post. To get it out, and maybe someone else will get something from this. But mostly because I can’t keep it in any more.

I’m autistic, and I’m angry, because the world sucks in ways that it doesn’t have to. Because I keep failing the tests that I don’t even know other people are setting. Because I’m pissed off that people keep acting like being different is a moral failing, and it’s not. Different is different, it’s not wrong.

I’m angry, because making eye contact and small talk are considered to be deeply meaningful skills, and I have to spend too many of my spoons on trying to remember to do these, and how often, and how much, and when (not if) I fail, I’ll be judged. I’m angry because I’m supposed to give you the benefit of the doubt, but yet I never get that. I’m angry because the world is not fair, but I have a deep need for it to be so.

I’m angry because I’m always the one who’s supposed to change. I’m angry because my first instinct is to be open and honest so I always get taken advantage of. I’m angry because I’m always wrong, difficult, weird.

I’m angry because sometimes I just can’t, but I have to anyway.

But mostly, I’m angry because I want it to be better, and it isn’t.

© bardofupton 2021