“Does anyone else find normal, boring, every day life really exhausting?”. It’s a question commonly asked in the autism groups I belong to on Facebook, and the answer, by the overwhelming majority, is always “yes”. Sometimes with added “but I don’t know why, and I feel really pathetic for struggling when there’s nothing obviously stressful going on”.
I’ve experienced different types of exhaustion throughout my life. Endometriosis-related; the kind of fatigue which often goes along with conditions which involve your body attacking itself in various creative ways, manifesting itself as the sense that I age fifty years at certain points in my cycle. Post-traumatic stress has been another cause: after certain events in my life, my nervous system has been constantly on high alert, and I’ve burnt out within weeks. My experience of depression has often been similar to this, in that I tend to become depressed after long periods of stress, especially if I have no control over the stressor. Then, I drag myself out of bed, crawl through the day in a fog, and am desperate to retreat back to a darkened room by 6pm, though even lying flat in bed feels intolerably tiring. Insomnia has brought sleepy-tiredness, so there have been times in my life when I’ve fallen asleep in classrooms, the cinema, any convenient resting place, because I can’t seem to lose consciousness where and when I’m supposed to. And, of course, there was the jittery, bone-cold exhaustion of being seriously malnourished when my anorexia was at its worst.
I sleep well now, my weight and mood are fine, I am no longer hypervigilent to reminders of trauma, and my endometriosis has been much better since the operation. But I will always answer that question with a yes, me too. So why do I still find the world so exhausting to engage with? I’m going to take you through a typical day’s worth of the challenges I deal with to demonstrate.
During the week, my day starts at 6.15am. Although I’m usually a little drowsy from the medication I take at night, in some ways this is the time of day that I feel best. I’m relaxed, calm; so far no spears have been thrown at my nervous system. The first test to get through is breakfast. I eat the same thing every weekday morning, so I have a routine that works fairly well, but I find changes difficult to adapt to. I ran out of dates last week before buying some more yesterday, and adding back in the step of chopping them into my porridge is strangely overwhelming. I need a chopping board, a knife, and I have to remember not to turn the hob up too high because the extra sugar burns my porridge too quickly – it’s not that complicated. But I have executive function difficulties: planning a sequence of actions is not one of my strong points. I open the cutlery drawer for a spoon, see the knives and remember that I need one, but then get distracted by the fact that I’ve forgotten to open the window to stop it steaming up, and why have I not turned the hob up today, that was silly…oh yes, dates! I need to chop them. While I’m looking for the chopping board I’ll get distracted by the cupboard above it because that’s where the bowls live, and while trying to work out whether I’ve already got a bowl out I will forget that the point of being on that side of the kitchen was the chopping board. And this should only be an extra five steps: find board, find knife, find dates, chop dates, put dates in saucepan. You should see me cooking dinner. How I’ve not lost a finger yet, I don’t know.
After showering, catching the bus into town is often next, either for lectures or work. The pavement outside is dirty. It hurts me. I can’t tell you how, but it makes my fingers curl, and I do a complicated dance, trying not to step on mud or worse. It’s not germs I’m worried about, it just all makes my skin crawl. Disastrously, on the bus there are soggy bits of filo pastry (undoubtedly originating from Greggs) on the floor by my feet and I am constantly aware of them. I can’t screen them out: my disgust response is on a hair trigger, however hard to try to desensitise myself. PASTRY. WATCH THE PASTRY. WATCH IT. SHOES. PASTRY. BAD. I take deep, slow breaths and try to concentrate on the sunrise.
Once I’ve seen the two clients scheduled for the day, I walk up the road to my university, which is only five minutes away. There’s a postgraduate common room, and I often sit in there to work on the computers if I have a spare hour or several. For the first hour it’s lovely and quiet, and I read through journal articles relevant to my thesis. Slowly, other students come in. One chews gum for seventeen minutes. I know it’s seventeen minutes, because I literally can’t focus on anything else, and I have to leave the room and drink tea in the little kitchen to calm down. But that’s over relatively quickly today. A few minutes later, a couple start up a quiet conversation. Normally, people quickly habituate to background noise: It might be irritating for a few minutes, but brains are generally very good at working out which sounds are irrelevant to them, and relinquishing awareness of them. I can’t habituate. Every word is like a pin, jabbing me, and I quickly start to feel anxious. Once I realise how agitated I’m getting I think of finding my earphones and listening to a rain storm on YouTube, which helps. I can’t listen to music, it has to be a consistent, non-patterned sound, because anything with rhythm, let alone words, will be impossible to concentrate through. The bass of the thunder obscures the voices, and I can think again. Back to reading.
The noise isn’t bothering me any more, but I’m still struggling to focus. I feel like nothing’s really going in. I’m reading articles on cognitive psychology, which can be a bit convoluted and difficult to understand at the best of times, but the main problem for me is that I can’t form an overview of a subject until I really understand the basics. Whereas, last year, others in my class seemed to learn just enough to be able to discuss a subject in an appropriate amount of detail for a Masters, this is not the way my brain works. My brain can’t prioritise; it can’t work out what is really necessary for understanding a topic, and what is superfluous detail. It treats all information equally, and refuses to integrate the massive collection of details on a subject until I’ve explored every rabbit hole I could possibly fall down. Consequently, I spend 98% of my time at university feeling like I’m desperately hanging on to a thousand different strands of a subject, and I still couldn’t actually describe what I know to you. There’s always a point at which everything finally comes together, and then I can actually see where I’m going – that point is exhilarating, and frequently I find that all those extra details push my marks over the border of ‘good’ to ‘great’, so there is a benefit in the long run. But it’s bloody painful going. I feel like my head might explode.
I’m working again, but after a while I notice that I feel wrong. Kind of…sad? No. Hungry? Not that. Oh, I’m cold! I am both alexithymic – I struggle to identify and describe emotions, although 16 years of therapy on and off have helped – and the physical equivalent, lacking much interoceptive awareness. I’m not naturally fluent in any of the signals my body sends, and I frequently either mix them up or overlook them until I’m half way to a panic attack because I’m too hot, or in pain because my bladder has been full for too long, or dizzy because I didn’t catch my body’s ever more urgent hunger cues. I dive under the table and turn the radiator up, and the sadhungrycold goes away after a few minutes.
Speaking of hunger, the next thing is lunch. I make this the night before, so at least I don’t have to deal with my unruly executives at this point. However, lunch is problematic on a sensory level. I am pretty much disgusted by the sensory experience of eating a lot of foods – untoasted bread, unmelted cheese, bananas, cereal, and so on. But I’m also not organised enough to make something hot (hot is easier, somehow) in advance every week, like soup, so I usually end up deep-breathing and distracting my way through a sandwich. That’s the hard part over with though – I have no sensory problems with the chocolate that comes next 😉
I’ve dealt with quite a lot of stress so far today, and my tics are getting louder and more frequent. They change every so often, as is common of neurologically-based tics, and for the last year or so it’s been sniffing and touching the side of my nose. This is part of why I’m so open about my neurological weirdness: autism is not an invisible disability for me, there are some aspects that are really obvious and easily misinterpreted. Occasionally someone from a different course shoots me a slightly strange look across the common room, and I idly wonder what they’re thinking. I don’t mind if they think I’m weird, but I do get anxious that I might be irritating them.
Ten minutes later, another group of students come in, and start working on a project together. They’re not talking loudly, but it’s enough to raise the ambient noise level a bit too far for my thunderstorm to compensate. I have to turn it off because when I can hear the voices over it, it becomes extra sensory input that I can’t tolerate. I try to work for a bit longer, but the voices are jolting me. It’s like being in a constant cycle of falling asleep, and being woken up a second later by a loud noise. I can’t cope with it and I have to pack up and leave.
So far all of the difficulties I’ve covered have been related to executive dysfunction or sensory distress. Autism is supposed to be about difficulties with social communication and understanding, and yet on a day to day basis, those are not really the things that bother me. This is mostly because of my environment: at university, the people I see most often are very tolerant of the weird. I accidentally insult people (after 18 months of working with me my supervisor laughs when I do it to him), interrupt conversations, meow randomly, stop talking mid-sentence because I’m distracted by something shiny, and misinterpret comments all over the shop, but everyone important knows I don’t mean anything by it. Even before my diagnosis, the weird was largely overlooked. There’s a lot of it about in my department.
This falls down when I’m not at home or university. After leaving the common room, there’s often something for me to do in town before I can go home. Today I’m changing my address with the bank that holds our joint account, having recently moved house. I go up to the desk – the queue is very well defined, which helps, because unorganised queues make me so anxious – and try to explain to the cashier. It all comes out wrong, with preamble that doesn’t make sense, mixed up words, and ending with me just thrusting a letter I got from the bank at her, hoping that will explain it. It doesn’t matter how well I prepare for communicating with someone I don’t know, my brain usually scrambles it. And when she replies, I don’t understand what I’ve heard, but after decades of unconsciously covering up my difficulties with processing spoken language, I automatically nod. Two seconds later my brain catches up with my ears, and I have to shake my head instead and correct her. It’s proving difficult to train myself out of this autoresponse, and I frequently end up having to go back to someone I’ve interacted with to try again.
On my way to the bus stop someone catches my arm and says hello. I stare at them blankly for a second too long before recognising the accent and general configuration of height/hair colour/clothing of my supervisor. I have mild-moderate prosopagnosia – recognising people by their faces is a struggle. People with total prosopagnosia don’t even recognise when they’re looking at a face (hence The Man Who Mistook His Wife for a Hat), and I’m not that far up the spectrum, but I frequently walk past people I know really well: my lovely and frequently-insulted supervisor, my ex-boyfriend, friends, therapists. While my brain is occupied with trying to identify them, I usually miss the first thing they say to me as well, and a blank stare followed by extended silence doesn’t make for the most rewarding or stress-free social encounters. I am quite happy to explain to people why I’ve seemingly ignored them, so I don’t worry too much about what they must think of me, but I still get caught unawares every time and it never fails to frustrate me.
Finally, I am on the bus. I am so looking forward to getting home, because at home I’m maybe 90% in control of my environment. If something is messy I can tidy it up, if it’s too loud I can turn the volume down, if I can’t string a sentence together I can just flap or meow at my wife and she’ll get the general gist without giving it a second thought. There’s still dinner to make and tomorrow to prepare for, but I get to rest after that. I can stare blankly at my laptop or read one of my endless supply of take-yer-brain-out crime novels to recover from the general cognitive and sensory overload of the day. I can’t even tell you how relieved I feel when I think about my flat, inside of which is my comforting dressing gown, the ability to make cups of tea on demand, our squishy sofa, the rustling trees, my rocking chair, and all the other things at home that make me feel safe and calm. Also my wife. Mostly my wife.
Despite all of this, I don’t hate being autistic. I wish it wasn’t all so tiring, I am perpetually terrified of burning out, and I have the ever-present sense that the world is sandpaper on my nerves. But overly sensitive perception works both ways. I am riveted by dappled light among trees, falling rain, the colours of the sunset, the sharp geometry of my favourite bridge. I can take 500 photos of the same thing, and I might grumble at sorting and categorising them afterwards, but I secretly love the orderliness of creating my own filing systems, and I never tire of looking at the same view from minutely different perspectives. I experience childlike joy when I see butterflies, or wrap myself up in an extra-soft blanket, or stroke a friendly dog. I often come across as aloof, standoffish, unable to concede a point, and a relentless know-it-all to people who don’t know me, but I also know I grow on them after a year or so: they laugh at my bizarre turns of phrase, admire my capacity for entirely useless trivia, and comment on my depthless curiosity about the world and its alien inhabitants. I am dazzled by it all. So I’m constantly tired, and frustrated, and my nerves are taut with stress on a daily basis. But I still keep opening my door and going outside.