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

Before and after

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)

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

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

Breast cancer – a non-binary perspective

Content note: cancer, surgery

It’s weird, getting breast cancer when you have an ambiguous relationship to your breasts – suddenly you’re thinking about them constantly when you’d managed to largely ignore their existence. I mean, cancer sucks regardless, no doubt about it. But breast cancer is one of those really gendered cancers, and if you’re a person with gender issues anyway, the whole process is very odd. And disconcerting, and very very cisnormative, not to say cissexist.

Continue reading “Breast cancer – a non-binary perspective”

My cancer experience

Content note: cancer

I found my breast lump on my birthday. I was in bed, lying on my front and I thought “ow, that’s uncomfortable”. I reached over to adjust my breast and felt a lump – and not one of those “grain of rice”-sized ones either – this was huge, a good 3 cm or so. I tried to tell myself it was just a cyst, but I knew it wasn’t. I went to my GP and got referred onto the cancer pathway. And from there it should have been straightforward, but it really really wasn’t. Or at least it didn’t feel that way.

I remember certain moments very distinctly:

  • my GP asking me, incredulously, if I really hadn’t noticed the lump earlier – uh, no? or I would have come to see you before
  • my breast surgeon giving me the results of my biopsy by asking me what I thought the results were – that is definitely not how to break bad news, mate!

The rest is a bit of a blur. I remember the frustration of being given minimal explanation of why they chose my treatment regime, and searching online for more information and finding more information but less detail than I really wanted. Mostly I remember trying to get information out of the hospital – appointment dates, where I needed to go for my surgery. It should have been easy, but unfortunately my cancer nurse went on leave for 3 weeks just after I was diagnosed, and the other cancer nurse she gave me the details for was quite unfriendly, so I was not motivated to ask her for more help. This rendered the entire process way more stressful than it had to be. There was a lot of crying at work after yet another fruitless phone call to someone who couldn’t – or wouldn’t – help me. Somehow everything seemed to be going simultaneously glacially slow (when I was waiting for results or trying to get information) and super-fast (when they needed me to do something).

After all that, the surgery was actually kind of a relief.

About 7 weeks after I found the lump, I had a mastectomy and axillary lymph node clearance, which was both more and less traumatic than I thought it would be. On the one hand, it didn’t really hurt, although there was (and still is) total numbness in that area and some surrounding areas. On the other hand, it was surprisingly traumatic having a breast removed (given my ambiguity towards my breasts), although I guess that was due to it not really being my choice.

And then there was chemo – everyone’s favourite treatment (no, not really).

Chemo was a truly horrible experience with some amusing bits (orange pee!) and a whole host of appalling side effects which weren’t really mentioned – everyone knows about the nausea and hair loss and fatigue, but then there’s the neuropathy – I had to pull the plastic seal off the milk bottle with my teeth, because I couldn’t grip it with my fingers.

There’s the weird taste effects – everything tasted like it had come out of a drain.

There’s the fact that nobody can tell you when or if the side effects will go away – all you get is “well, they go away for most people”.

There’s the fact that you never know which side effects you’re going to get – I got the agonising bone and joint pain (days when I could literally feel every bone in my body, because every single one hurt; days when I felt like my bones had splintered beneath my skin), but I avoided the oral thrush (thankfully). And although I got a couple of infections, I never got neutropenic sepsis or ended up in ITU, so I got off lightly in that respect.

Then there was radiotherapy, which was both more intense (5 days a week for 3 weeks) than chemo but also far less difficult. The hardest part was lying still for 30 minutes. The best part was playing the world’s crappiest computer game – trying to hold my breath so as to keep one bar within another bar on the screen that I could only see via a mirror above my head. That was surprisingly difficult some days. The worst part was that the side effects peak about two weeks after you finish, which happened to be during Christmas, so I basically had a really really bad sunburn over Christmas.

And then I started the end-phase: 10 years of hormone therapy.

The whole process of cancer treatment, for me, was like getting on a roller coaster. I had started the ride of my own volition, but after that I didn’t have any options – it was go here, do this, have this test, take this treatment. And all with minimal explanation. Which, okay, I get it, doctors are busy and there are set protocols for treatments for various cancers, but… I didn’t feel like I was taking part in treatment, I felt like it was happening to me. And it’s fast, too fast to really take in as it’s happening. I genuinely thought I was fine with having cancer for about 6 months, and then I suddenly realised that I was not fine at all.

There’s a metaphor about the storm of cancer, which I was introduced to during a post-treatment, moving-on-after-cancer course:

Before cancer, you’re sailing along in generally fair weather. You’re travelling in one direction. You have maps, navigation aids and provisions. You might even be part of a flotilla – you and some other boats, sailing in the same direction at the same speed. Life is fine, good even.

Then a massive storm hits – cancer.

Your boat is seriously damaged. Maybe parts of it are lost or broken. Your maps and provisions are swept overboard. In the eye of the storm, you lose all sense of direction. Your main terror is that the boat will sink.

Then your cancer care team appear. They are your lifeboat; your rescuers. They attach ropes, patch your boat up and keep it afloat; they come alongside you, and take control of the steering and direction. Slowly, they tow you back to port….

But then your boat just stops…. you’re moored just outside the mouth of the harbour. Then your lifeboat, and its team, goes. They drop the ropes into the water and sail away.

That didn’t resonate with me at all. I definitely felt, at the end of active treatment, more like I had just gotten off a roller coaster: faint, wobbly, and a bit sick. Treatment was not a journey or a battle for me; it was an experience that rendered me powerless. My cancer team were not my rescuers. Some of this may have been due to being a healthcare worker myself – I have too much of an insider’s perspective to see my team as saviours. Professionals, yes, but not saviours.

Before I got cancer, I always thought it was, let’s say, over-hyped. Yes, it’s an awful disease, but so are many others. I never quite got why cancer had this special place in our culture. Then I got cancer, and it really did make me rethink everything, question who I was and who I wanted to be and what I wanted to do with my life. It felt like my body was betraying me on a really fundamental level – it couldn’t even manage to do cell division right! And having cancer means thinking about dying – and facing the fact that you might die much sooner than you thought. And acknowledging that your cancer could come back, multiple times, and there is very little you can do to affect that.

So cancer has absolutely changed me, both for the better and the worse. The worse is mostly physical, side effects that haven’t gone away or an exacerbation of my previous conditions. The better? That’s more on the emotional and psychological side. I’m happier – which is kind of a weird thing to say, right? But I am. I guess because now I know, in a really visceral way, that it absolutely can be worse. So until it is worse, I’m going to try to enjoy whatever time I have left.

© bardofupton 2018

Embracing my disability

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

Pain – a poem (second try)

Since the first version seems to have mysteriously vanished from the previous post, here is the reconstructed version (similar but probably not identical to the original) – this will teach me not to keep copies!!

pain spikes
an indrawn breath
a shout above the background noise
needles through my flesh

and I
breathe in

enduring as always
for it to pass

© bardofupton 2018