‘Let a sufferer try to describe a pain in his head to a doctor and language at once runs dry’ – Virginia Woolf
Being autistic and in hospital brings its own unique challenges. There are ways to deal with them but it takes effort and attention. Right now I’m going through the learning curve.
The sensory issues in hospital are intense. Everywhere you turn is a noise; beeping, whirring, snoring, talking, footsteps, cars and ambulances, metal cupboards, medicine pots, foil packets. This never stops. Even at night, when it is quieter, the ward is still a hub of noise. I can’t complain because I contribute to this noise as much as anybody else. Nurses come in every few hours to change my I.V. drip or take my obs. When I leave my bed my I.V. pump beeps a monotonous alarm (no creeping up on anybody). I have ear plugs to take the edge off the noise but most of the time I block it out with other sound, whether it is listening to music or watching Netflix.
My sense of touch has an onslaught of new experiences to deal with. My I.V. is in my arm 24/7 and I can never not notice it. The plastic bracelet clings to my wrist. The thing blankets and sheets feel nothing like my bed at home. I am constantly being pricked, poked and prodded. My least favourite thing is the blood pressure machine, which tightens around my arm and leaves me feeling panicked for a reason I can’t identify. I have brought as much as I can from home to deal with this deluge of sensory input. My favourite blankets are with me constantly so I can rub away the bad sensations and distract my mind with a familiar touch.
I am in hospital because of digestive issues. This eliminates most of the taste issues that I could come up against because I can’t eat full meals. The brain does, however, crave tastes of things. I’m learning what to ask for and to manipulate what’s on offer to cater to what I’m used to. Instead of taking what I’m offered, I ask for what I want. It took me a few days to figure out how to be assertive – and as ever, I am still working on it. I’m learning to ask for vegan options that don’t get offered instead of settling for nothing or a vegetarian alternative. When they offer me toast, I ask for a banana and tools to mash it up. When they offer me a drink, I ask for a different kind of milk. Suddenly, different options come out of the woodwork and I can have the tastes that I’m used to at home. Unfortunately (and against the accessibility of most patients here), this operates on a ‘you don’t get if you don’t ask’ policy and I have to overcome my autistic confusion and anxieties in order to get what I want/need. I’m also hoarding jelly now and I don’t really know why.
Presenting like a Neurotypical Person
I do not present like the patients that the staff are used to, so the signs they watch for don’t apply to me. The most significant affect this has is perspective of pain. I do not appear to be in pain when I am. This is for a number of reasons. Pain is a sensory process, so it goes through my brain differently than in a neurotypical person. I do feel pain but some are easier to deal with than others. Autistic people tend to have a very high pain threshold. Mine may also have been raised even higher because I have been in pain most of my life, due to EDS. I am so used to pain that I just deal with it and don’t let it stop me doing what I want. As an autistic person, I am incredibly rational, which makes it easier to deal with pain when I know where it is coming from. Because I know that my intestines are cramping or my brain is dehydrated, the pain becomes easier to ignore. I also don’t tend to take painkillers because a) they rarely work and b) if I took painkillers every time I was hurting, I would kill my liver.
In order to adjust my behaviour so that it reflects accurately what I am feeling, I read my care notes every day. The first few days repeat, ‘does not appear in pain’ again and again. I have learnt to ask for pain medication. There is also a certain amount of hamming it up, just to behave like a neurotypical person in pain. That being said, I have had debilitating headaches from dehydration leaving me unable to do anything but close my eyes and listen to Netflix. However, I normally wouldn’t bother telling anyone about this. This leads us to the next hurdle; communication.
I have spent decades learning scripts for every social situation. There are certain rules within these scripts. The most notable right now are; don’t talk about personal things with strangers and the answer to ‘how are you?’ is ‘I’m fine.’ These rules do not apply in hospital and it took me a few days to catch on to that. I have to speak up when I am in pain, nauseous, when I’ve been sick and when I can’t cope. I have to tell strangers what my digestive system is doing and that I am not fine, even though I may look it. At first, this didn’t occur to me and that showed in my notes. It’s very difficult to tell the difference between a conversational ‘how are you?’ and a medical ‘how are you?’ I guess it’s about context; who is asking (but I’m surrounded by so many different people who all wear the same clothes, how am I supposed to know what the context is?). I just err on the side of caution and complain to everyone, which goes against everything I’ve learnt, which is basically that if you complain, people will leave because they don’t like listening to negativity.
The other way I deal with this is to copy those around me. There is someone about my age in the bed next to me who has been in hospital for ages. By listening to her communicating with nurses, I am learning how to talk, how to ask for things and how to say thank you. This is classic female autism; mirroring other people’s behaviour so that we can pass as neurotypical. It is the main way I get by in life.
Everything Changes so Never Plan
My whole life has been turned upside down. I’m in a new place with new people, a new sensory environment, a new routine and a completely new way of living. I’m dealing with this by retaining as much of my life as possible. I wear my own clothes and get changed every morning and night. I shower every two days like at home (as much as I can). I use my own soap and my own toothbrush. I start to sleep and wake up at the same time I would at home, despite the lights blaring on the ward and the fact that I could sleep longer if I wanted to. I’m fighting the urge to take a nap during the day so that my home routine can be preserved.
I have a number of tests coming up and I have no idea when they will happen. The biggest thing is that they will be inserting an NJ tube (a tube that goes through your nose and all the way into your intestines) so I can be fed and this could happen any day. Hospitals are slow and I’ve already been waiting days for this, being kept alive by I.V. fluids and supplements in the mean time. I can’t plan because I don’t know what will happen when. I don’t even know how long I’ll be there. The only way I can deal with this is through distraction. Autistic minds are busy and if we aren’t occupied, we worry ourselves into a spiral of anxiety. This also affects my presentation on the ward because I am always doing something; watching television, writing, doing puzzles, reading. Other patients will lie in bed unoccupied for hours, staring holes in the walls and this perplexes me endlessly. I am the only one who is busy. This probably makes me look less ill than I am but I would go into a meltdown if I didn’t keep myself occupied.
Prosopagnosia is also known as face-blindness. It’s fairly common in autism but not everyone with autism has it. I can’t tell the difference between people. Obviously people who present as female, male or adrogynous are fairly distinguishable but I find that overall, people tend to come in pairs. I have two doctors that I can’t tell the difference between and sets of two nurses that I can’t tell the difference between. They might as well be the same people. However, they aren’t the same people. They have distinct minds, ways of communicating and memories. I repeat myself a lot because I can’t tell if I’ve told a piece of information to them or their double. I can’t play The Social Game (which exists in hospital just like everywhere else). This is because everyone plays it slightly differently and if you can’t tell who you’re playing with, you can’t adjust your behaviour accordingly.
Autism makes experiences like this completely different. The emotions and challenges we face are different to what a neurotypical person would face. In some ways it might be easier (I feel like my self-awareness probably makes me less likely to become institutionalised) but there are also a lot more hurdles. It takes knowing yourself and your own autism to be able to negotiate these barriers in a productive way.