Autism, she wrote..

The problem with being Autistic – if there can be such a thing – is that contrary to what many may believe, you’re unlikely to know I have a diagnosis of Autism Spectrum Disorder unless I choose to tell you. Whilst I consider myself to be the quintessential Autistic, growing up undiagnosed in a neurotypical world has enabled me to mask my Autism expertly. For as long as I can remember I studied the people around me, emulating their words and behaviour (a phenomenon often seen in Autistic individuals known as ‘masking’). It wasn’t until my early teens when the inevitable social pressures which came with growing up caused the cracks in my masquerade to show.

Fast-forward 15 years or so, I have an Autism diagnosis; and I am a registered nurse. Since I qualified in early 2021, I have worked on a busy acute surgical ward in Wales’ capital city.

Autism to me is the special way in which I process the world around me. Research has consistently shown that Autistic brains actually work differently to brains without Autism. There are neural pathways that exist in my brain that don’t exist in a neurotypical brain, and areas of activity which light up in a neurotypical brain that won’t do so in mine. No, it’s not a ‘personality quirk’, and I’m not ‘just being difficult’ (mostly); I am neurologically and biologically wired in such a way that isn’t the norm.

Largely, in my personal experience, the hospital environment does not lend itself kindly to those with Autism. I think back to my first few weeks on my current ward, I would be sent to the treatment room to retrieve a pair of scissors, and what would greet my eyes if you’ll care to imagine would be floor-to-ceiling drawers. On each drawer stuck a bright neon label, the colours of which varied but with no discernible pattern. The problem I immediately had, that with 40+ drawer labels all vying for my attention, I failed to be able to read a single one. The NHS seem to relish the idea of sticking a brightly-coloured label to any and every drawer, cupboard and hidey-hole within their dominion, each one brighter and bolder than the one before. The consequence of such chronic over-labelling is sensory overload and a complete inability to find anything amongst the visual chaos that is the store-room. In case you’re having difficulties in visualizing the situation I am trying to describe, allow me to use another hopefully more relatable example: The Purpose-T pressure ulcer risk assessment tool (try saying that five times fast). I would hope that most of us are familiar with Purpose-T, and if not an example is readily available on Dr. Google. Whilst I’d agree that having a colour coded system has many benefits, to satisfy my mind it has to be presented in an orderly fashion with at least some hint of a reliable pattern. The feeling that arises in the pit of my stomach when attempting to complete the Purpose-T is a kin to the feeling you would get if I presented it to you written in Ancient Hebrew and wished you the best of luck.

There is an element of playing the part that happens as soon as I put on my scrubs, when I am in blue, I have a role to play and expectations to meet. I have already talked about masking, but I mask differently depending on the situation. The way I mask at work isn’t necessarily the way I’d mask out at the shops. Sometimes – and I must admit that it happens because it is an important aspect of Autism – no matter how hard I try, the mask slips. Whether it’s because I haven’t slept well the night before and so my mental resilience is lowered; whether I’m having a bad shift and am so overwhelmed that it is beyond my capability to carry on masking; or whether I honestly think I’m masking very well but for whatever reason I’m getting it wrong; sometimes Autism, much like Dr Jekyll, rears its head and my well-played part is destroyed in a moment.

As a student, I opted to complete my management placement on the same ward that I was offered my band 5 job. I am under no obligation to disclose my neurodivergent status to any employer – and I don’t. I have a few reasons for this which I won’t labour but briefly: I don’t want to be pre-judged, and I don’t want to be tolerated merely because I have Autism. I want people to accept me as me, Autism or not. What I often fail to consider however is how overwhelmingly Autistic I actually am, particularly when thrust into new social situations such as that of starting a new job. I managed three weeks on the ward before I was summonsed to sister’s office (my record up until that time was the eight weeks it took me to be hauled in front of the course leader during nurse training). I was presented with a list of my failings, and there were a lot of them, and I found myself suddenly and rather unceremoniously being outed as having Autism. I’m left nursing the scars – no pun intended – I gained as a result of that time, and whilst my friends were looking forward to qualifying, the start of my nursing career was not a happy one. I think here of a story my dad once told me of Mr Smith, who was charged with the crime of criminal damage for graffitiing a wall. Three witnesses saw him do it, two police officers caught him in the act, and the whole incident was recorded on a Ring doorbell camera. When Mr Smith stood up in court to plead his defence it was a simple one: “your honour, it’s my wall.”

The mistake I so often make in my decision of non-disclosure is that I try to separate myself from Autism; I can dye my hair blue or pink or whatever colour takes my fancy that week, but the fact remains when the roots grow in, they’re brown. Similarly, I can deny my Autism and put up an Oscar-worthy performance of a neurotypical mind, but sooner or later my roots will show through. By denying the people around me the complete truth about who I am, am I forcing myself into situations where I fail to be understood?

I may be rude, or blunt, or confrontational by neurotypical standards, but I’m not neurotypical, I’m Autistic. Slapping me with such labels makes as much sense as coming home from the aquarium and leaving a scathing review on TripAdvisor complaining that there weren’t enough monkeys. You’re of course allowed to be disappointed that you didn’t see any Orangutans splashing about at Sea World, but publicly complaining about it to others will not prompt the chief executive to invest in monkey swimming lessons. So I implore you, next time you feel frustrated with somebody who has Autism, picture the Jungle Book’s King Louis being forced into appearing on a West End production of The Little Mermaid – for that’s probably how the Autistic person is feeling.