Tag: disability

Being diagnosed with autism as an adult

~ bardofupton ~ Leave a comment

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

Before and after

~ bardofupton ~ Leave a comment

CN: cancer

Another cancer patient once asked me if I was grateful I’d gotten cancer. The answer is definitely no, but. There’s that but, that’s the problem.

There are lots of ways I could divide my life: pre and post moving to the UK, for example. Pre and post various traumas. Pre and post disability. Pre and post coming out. But cancer definitely changed my life in a sudden and obvious way, and so that’s how I divide my life these days: before I had cancer, and since.

I’ve written before about how getting cancer changed my outlook on life. I’m now almost five years out from finding my lump, and my life is very different to how it was before.

Different in good ways, and in bad.

The bad is mostly health-related: my chemo fatigue never went away, and all my other conditions got a little bit worse post-chemo.

The good is a lot of things: new friends, closer family relationships, partway through transitioning, working out the rest of my identities. Getting my autism diagnosis. Regular-ish blogging/writing, even. I’m getting better at setting boundaries, at knowing my limits. I feel more me than I think I ever have.

I’d never say I was glad I got cancer, but there have definitely been some positives that have come out of that whole experience. Would I have preferred to have had the positives without the cancer? Obviously, but it is what it is, and getting cancer definitely gave me the push I needed to take steps to improve my life.

So, to answer the question at the top, I’m not grateful for the cancer, but I acknowledge there were some beneficial effects. I just wish I could have had the personal epiphanies without the cancer.

© bardofupton 2021

This is how the world is (nonfiction)

~ bardofupton ~ 1 Comment

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

Non-binary and disabled

~ bardofupton ~ Leave a comment

This piece was previously published in September 2018 in the Disgender zine – you can see the zine here, and I encourage you to check it out. There’s lots of cool stuff in it, all themed around being trans/non-binary and disabled/chronically ill.

Becoming (realising I was) non-binary was a lifetime’s process, of fighting a femaleness (femininity) that never belonged to me; of hating the breasts and periods that life burdened me with; of not knowing who I was, what I was, only what I wasn’t, a confusion made worse by growing up in a place and time that barely acknowledged the L and G of LGBT+ (never mind the rest), and so left me bereft of words, of a name for my being, stranding me in a place of “well, female I guess, if I have to choose (but why do I have to choose?)” that never felt right or true; of always wondering why I wasn’t like everyone else, why calling myself female was unsettling, but calling myself male was definitely wrong.

Becoming disabled has been half a lifetime’s process, of injury and illness, of pain and cumulative slow failure of my body’s systems, and yet, I can love my non-binary disabled body in a way I never could love my abled, presumed female body; I can revel in what it can do, appreciate my non-binary self for what it is. Weirdly, it’s illness that taught me to love my body, to appreciate being alive – and it’s illness that finally gave me both the courage and the words to call myself both non-binary and disabled. After years of thinking (insisting) I wasn’t disabled enough to claim that as an identity (because I can x, because I can’t y, because I’m not z) I got cancer, and it was weirdly revelatory in some ways. I had to think about death, and about how having cancer means always having to think about cancer, at least a little bit, even though I’m now in remission, and I thought about what I wanted the rest of my life (however short or long) to look like. And the biggest part of that was I wanted the rest of my life to be mine, to stop being afraid of what people might think of me, and claim myself. And I looked at the mix of physical issues I have and thought, yeah, I’m disabled. I need to own it. I walk with a fucking stick, clearly I’m disabled. Being able to sometimes do without the stick doesn’t make me not disabled, any more than wearing a skirt makes me female. And it was having a mastectomy that made me realise that it’s not that I’m a woman who’s bad at being female, it’s that I’m not a woman at all – which was a deeply and profoundly liberating experience.

The first day I left the house as a newly-identified non-binary person I felt like I owned the world. All the anxiety of a lifetime of faking femaleness fell away from me, and I felt free. I felt like my body finally belonged to me and I could stop caring what other people thought of me; like I could look at myself and not see a failed woman, but see someone who was living on their own terms, someone who belonged not to the world, but to themself – someone who could build their identity from the ground up without any shoulds from society (how to dress, how to act, how to be), someone who could create their own norms – someone who wasn’t an imposter, but who belonged. Someone who could wear a dress if they wanted, or not – but either way it didn’t define them; someone who could be themself, whoever that might be. Someone who is (finally) happy to be themself.

© bardofupton 2019

Embracing my disability

~ bardofupton ~ Leave a comment

Content note: cancer, discussion of ableism

It took me a long time to be willing to call myself disabled. Longer than it should have, really. I kept finding reasons why it wasn’t true – I don’t use mobility aids (until I did); I’m not “officially” disabled (as though that matters – my chronic pain certainly doesn’t care that I don’t count as disabled under the Equality Act); I don’t want to presume to call myself disabled when other people are much more disabled than me (and yet, I’d furiously disagree with someone who told me I wasn’t queer enough). But that was all a veneer papering over the fact that I just didn’t want to be disabled.

I wanted to be like everyone else (but only in this one way). I didn’t want pity, or special treatment. I told myself lies about how I wasn’t different, that the things that were becoming difficult were things I didn’t want to do. But really, underneath, it was pure internalised ableism. Subconsciously, I thought of people with disabilities as being different from everyone else – and I wanted to be part of the everyone else. Ironic, really, since I’ve never wanted that in any other aspects of my life.

And then I got cancer. Which made all my other symptoms worse. And during the course of cancer treatment and the aftermath of that treatment, I was finally willing to accept that I am disabled.

I’m sure I would have reached that conclusion eventually: my conditions were only ever going to get worse, after all. But cancer definitely helped to speed up that realisation.

The root of my resistance to labelling myself disabled was that I didn’t think of it as a positive identity – unlike being queer, or non-binary, or mixed race, I didn’t see any positives in it; it seemed to be an identity consisting solely of losses. But of course, that’s the ableism talking.

I came across the social model of disability a while ago, which helped to clarify my thoughts about disability: it made so much sense! But I still didn’t feel comfortable using words like disabled to describe myself. I felt like I didn’t have the right to those words at the same time as not wanting to admit to myself that I was disabled. I felt like embracing the label of disabled would be giving up on the possibility of becoming “healthy” again – even though I knew full well that there was no chance of a cure. My dodgy joints will remain so, my chronic pain will never disappear. The best I can hope for is to minimise the effects of both.

I’m still not part of any disabled community, nor taking part in any activism, but maybe that will come in time. For right now, I am just accepting that part of myself, acknowledging its existence, and recognising that it’s okay, that I am still me, that this aspect of my identity is just another part of myself that I need to come to terms with.

© bardofupton 2018