Part 122: A Day In The Autistic Life

A head and shoulders photo of me in a grey beanie and white vest, offering a paper cup of an alcoholic beverage toward the camera.  I have a ridiculous fake smile on my face.

Hello, and welcome back to The Autistic Writer. I hope you’re all as well as you can be. My week has felt a little hectic. I’m tired, and my willpower is at a low ebb. I’ve struggled with back pain all week. A visit to my physiotherapist resulted in some new exercises to try, so we’ll see how that goes. There’s no major news on my new house as yet, as things are still with the conveyancer. I’ve started thinking about the work that will need to be done on the property – the security system, new locks, and major work like the bathroom and kitchen. Honestly, I feel a little overwhelmed by the prospect of project managing this. There was a time I would have grabbed a project like this by the throat, but my capacity for anything and everything has been permanently diminished by the protracted autistic burnout that led to my autism diagnosis a few years ago. But I need to do this project as much as possible by myself, in order to reclaim some self-confidence. I’ll let you know how it goes as things progress. Now, onto the autism stuff…

For this week’s blog, I’m doing something a little different. I’m going to take you through a day in my autistic life. The day in question happened a few weeks ago, when I just decided this was the day I’d make a few notes about how things went, to use in a future blog. That time is now. I’m not going to take you through every minute of the day, of course – I’ll just explain my daily experience, frustrations, and flashpoints from an autistic point of view. But perhaps, I should change that, and say from a multiply neurodivergent point of view, as I have become increasingly self-aware of how my other neurodivergent traits play out in my daily life. I’ve included some focus on the issues that I consider to be in the halo of my neurodivergence; the so-called co-morbidities. These are health issues that, for whatever reason, are unduly common in autistic people; depression, anxiety, OCD, attention deficit, phobias, IBS and other gastro-digestive issues, joint pain, general unexplained pain, etc. None of the following account of my daily experience is made up – it all really happened – but I have made some minor changes to protect some identities. Also, the times I list for events are rounded up to the nearest 15 minutes or so, as I didn’t see the point in recording exact minutes and seconds. Are you ready? Then let’s go…

00:15. How long have I been asleep? An hour and a half maybe? But I’m awake in a sweat, and have horrible pins and needles down my right arm and hand. I flex my fingers, but it takes a while for the feeling to come back. My bedside Alexa device is playing ocean sounds, and will continue to do so for another couple of hours. There’s a slight crack in my curtains, and a security light from the next apartment block is on full beam shining through. I get up, and wince at the pain in my lower back. I adjust the curtains, go for a pee, wince at lower abdomen pain, and get back in bed. Alexa sings me to sleep again.

04:00. I’m awake, in a further sweat. My head is pounding and my neck feels stiff. The bedroom is freezing, because I have to sleep with my window open a little, for fresh air. But I get up and close the window, now. I’m shivering. How can I have sweats while I’m so cold? It baffles me. I get back in bed with my electric blanket on, and doze.

05:30. Alexa plays my morning alarm. My head, neck and back all ache. I get up, throw on a robe, and start my morning routine. Toast and marmalade and a big mug of coffee. No sooner have I taken a bite than stomach cramps kick in. I manage to finish my breakfast before I deal with the cramps. While eating my breakfast, I scroll through BBC news and a bit of social media, trying to take my mind off how lousy I feel. After dealing with two bouts of stomach cramps (normal for a weekday), I brush my teeth, being careful around the problem tooth that was the subject of a recent, failed attempt at a root canal procedure. I make a flask of coffee and grab some snacks for work. Before I put my coat on, I stop and try to examine how I’m feeling physically. I do this every morning. I need to ascertain whether I’m going to need another trip to the bathroom before I leave. Yes, I do. I’m probably going to be late for work now. Finally, I put on my coat. Then I go through my checklist: Have I switched off all my devices? Nope, I’ve forgotten to switch off my electric blanket. I do that. Okay, Have I got my wallet and bus card? My passcards for work? My phone? My watch? My headphones? Good to go. Somehow, two hours have passed since I got out of bed. My commute looms ahead, and honestly, I’m dreading every moment of it. I lock my front door, then the porch door, walk to my car… and freeze. Did I actually lock my front door, or just think I’d locked it? Shit. I go back and unlock the porch door, check the front door – it was locked – then lock up again and head to my car… and freeze. Okay, I was annoyed with myself when I went back to check the lock, and I’m concerned that in my annoyance, I might have not really locked the porch, just intended to. I’m frozen in place. I need to go to work. But I have to go back and check the porch. It’s locked.

07:30. I start my car, and scrape off the ice while the engine warms up. As I set off, I’ve got a horrible feeling I left the porch unlocked. I was in such a mood checking, and might not really have checked. Can I remember actually checking? No. But fuck it, I have to go to work. If an opportunist walks into my flat the steal things, at least I’m insured. Assuming I remembered to renew my insurance, that is. My stress level is through the ceiling.

It’s a few minutes drive to my parking spot; a little side road just off a major bus route. Why don’t I drive all the way to work? Lack of parking spaces, and horrible city centre traffic, that’s why. After parking, I wait four minutes to cross the major road to get to my bus stop. Traffic is heavy, and no one is stopping to let me cross. Two buses that I could have caught sail past while I’m waiting. I’m going to be really late for work. I hate being late for anything. My heart rate goes up. Eventually, I get across to the bus stop as another bus is coming. This one takes a longer route, but I stick my arm out to signal it to stop. As the bus pulls up, a thought chills me: Have I renewed my bus card? I think it ran out over the weekend. Shit. I get on, scan my card, and it’s okay. I’m confused. Surely, it had run out? Nope, I remember now, I renewed it on Friday, but it had slipped my mind, as many things do.

07:45 – 08:15. The bus is almost full when I get on, and within two stops, it is packed with schoolchildren and other commuters. Some of the passengers are standing in the aisle. The close proximity of so many people makes me feel grossly uncomfortable, especially the people standing and looming over me. At least I’m not on an aisle seat. I’ve got my noise-cancelling headphones on, listening to an audiobook about a serial killer. But I’m struggling to follow the narrative, as my attention keeps getting diverted by over-cramped conditions on the bus.

One seated passenger gets off, and the seat she vacated remains empty, even though people are standing. The woman on the adjacent seat slides her bag along the filthy, wet, bus floor, and plops it on the empty seat. I wonder which poor soul will be the next to sit on the seat she has just dirtied up. At the next stop, an elderly man with a walking stick gets on, and gestures for the woman to move her bag from the seat so he can sit. She does so without comment.

A guy gets on in work clothes and a grubby high-vis coat, and stands in the aisle. He smells really, really bad, the odour filling the bus. I’m almost gagging, but no one else seems to react. I realise none of the bus’s windows are open, and the panes are fogging up. Not great considering the prevalence of covid. The window next to me is a solid pane and cannot be opened. I realise I’ve missed about three minutes of my audiobook, because I’ve been so concerned with the packed bus. I rewind the narrative and try to focus. The passenger next to me gets off, and a schoolkid who was standing in the aisle sits next to me. He puts his bag across his knee… and also across my knee… before he starts staring into his phone. I look at him, at his bag, and back at him. He’s oblivious. I pull out one of my earphones, and say to him, “Excuse me. Will you take your bag off my leg, please?” He stares at me like I’ve got two heads, and sullenly drags his grubby bag away. All day long, I will be conscious of the area of my leg that his bag was resting on. I am now contaminated. I’m acutely aware of the pressure of this kid pressed up against me on the seat. I hate it. I just want to get off. I realise that I have not absorbed one word of the audiobook since I rewound it. I rewind it again, and try to focus, but some guy with an east European accent toward the back of the bus is literally yelling a conversation into his phone, and I can hear it over the noise-cancelling of my ‘phones. I give up and pause the audiobook. I’m now without the calming effect that listening to an audiobook often brings.

The stop where the school kids and older students get off comes, and the bus almost completely empties. The last few minutes of my journey should be less unpleasant, but the traffic is horrendous, and I’m going to be so, so late for work. I’m faced with a choice; get off now, and walk the rest of the way to work, or continue on the bus for a few more stops, and get my connecting bus that drops me virtually outside my workplace. Either way, I’ll be late. My back hurts, my legs ache, and I’m dying for a pee. I can’t face the walk up one of Sheffield’s many mountainous hills, so I stay on the bus, finally getting off at about 08:15. I have to be at work for 08:30. I start walking to my next bus stop. People used to comment on how quickly I walked, but that’s all changed since my back problems. As I walk through Sheffield’s Chapel Walk to my connecting bus, an old lady overtakes me.

08:30. After a wait in a long queue, two buses arrive at once. The first one is packed, but most of the people in the queue haven’t noticed the second bus, which is almost empty. The few that have seen it drop back to get on it. I have to make a decision. Which of these buses will pull off first? The fact that two buses arrived together tells me that one of them is either late or early, which potentially means one of the buses will wait at the stop for a while before departing. Experience tells me the emptier bus is likely to be early, and will wait in. I really can’t face another packed bus journey, but I also can’t face being even later for work. I bite the bullet and get on the packed bus. It’s so full that all the seats are taken, and some people are already standing. I’m amazed the bus driver even lets me on, but he actually lets on a couple more after me, too. One of those getting on after me gets involved in a long conversation with the driver, probably about the validity of her ticket. The half-empty bus behind us pulls away and heads off. I’m gutted. The person who was disputing her ticket with the driver gets back off, shouting something unpleasant to him. All the windows on the bus are shut, and fogging up. The bus driver has really poor control of the gears, and jerks us all the way through the journey. My back is killing me.

Seated near me, I see a young man wearing big headphones. He’s ever so slightly nodding his head to whatever music he’s listening to. His eyes are closed, and there’s just the trace of a smile on his face. When he gets off, I notice he’s walking almost completely on his tiptoes. Despite feeling like shit, I smile.

The guy standing next to me in the aisle is huge, and he’s wearing a backpack that he keeps banging into me. Halfway through the journey, the bus fills with an awful smell. I really want to get off. This is only a short journey, but as we head toward the university district, traffic slows almost to a complete stop. I decide to get off one stop before my usual, and walk up the hill from there. My painful back makes it slow going. I’m desperate to pee. My heart is hammering from the sensory and proximity overload of the bus journeys. I feel utterly miserable, dejected and stressed out.

08:45. I walk into my office a quarter of an hour late, and apologise to my colleagues. My boss takes one look at my face, and says, “Tough journey?” I nod. I need to get cracking with my job, but I also need the bathroom. So, I finally go for a pee, making me even later actually starting work. I work with some lovely people, and no one gives me a hard time for being late. They don’t have to. I’m already beating myself up. If only I had a bit more of my old get-up-and-go, maybe I wouldn’t have been late.

09:00 – 12:45. The morning has a heavy workload. This involves me being on my feet and constantly mobile, which after a while loosens up my back. But by half past eleven, it’s tipped over the other way, and my back pain really goes up a few notches. Everyone in the office is concentrating on their work, so there’s not much chatter; most of the noise comes from the occasional phone ringing, documents printing, and the drone of the radio. My audio processing problems mean I can only ever process about 10% of the music played on the radio, and zero percent of the talking. I mean this; I can literally not make out any of what the DJ or studio guests say; the other sounds in the office combine with the radio to create what my brain interprets as a garbled hum. This means that whenever my colleagues comment on something said on the radio, I can’t join in the conversation, because I have no idea what has been said. I don’t want to draw attention to this problem, after all it’s not the end of the world. But I think many people just don’t understand how people with audio-processing issues can feel excluded at times. It’s possible to feel lonely in a crowded room. I’m horribly stressed out all morning, but years of ingrained masking have become habit, and I’m fairly sure no one will be able to see how stressed I am. I even manage to crack a couple of one-liners 12:30 is lunchtime, but I carry on working, to make up time for being late this morning. I cannot tolerate owing my employer time.

12:45 – 13:30. I head to the canteen to eat the snacks I’ve brought with me. Generally, I just eat a couple of light, healthy snacks for lunch. I don’t like to eat too much on workday lunches, as I’m worried that with my elevated stress levels in the workplace, more than a few bites of food could trigger stomach cramps, and I don’t like using the toilet at work because of my germophobia. Normally on my lunch break, I go for a walk in the park after my snack. The lunchtime walk is the highlight of my working day; fresh air, a gentle stroll, and my audiobook playing. But due to cutting my lunch break short, there isn’t really time to take the walk. So I stay in the canteen, sitting on my own (by choice), scrolling through social media. I make sure not to touch my leg that was contaminated on the bus journey this morning. I generally sit on my own at lunch, and some may think I’m being antisocial. In a way, I am, because after the stress of a morning’s work, I’m low on the mental energy it takes to socialise or make small talk.

There is a pedal bin in the canteen, and every time anyone uses it, the lid closes with a loud bang. To me, it sounds like a bomb going off. It’s driving me to distraction. I put my headphones on, but I’m too stressed to be able to focus on my audiobook, so I just turn on the noise-cancelling, and don’t listen to anything. The bin lid is still banging, but the headphones have taken the edge off the noise. When it’s time to go back to work, I drop my rubbish in the pedal bin, and keep my foot on the pedal to lower it gently into place without banging the lid. It’s quite easy to do. As I exit the canteen, I nearly jump out of my skin as someone lets the lid bang closed.

13:30 – 17:00. After the busy morning, the work now turns to desk-based admin. The workload is high, and everyone is focused, but gradually as we get on top of the work, chatter starts to build up. Various visitors come and go, making small talk with various colleagues. Not with me. Gradually, the office chatter intensifies. The sky outside has turned blue, the sun is lowering, and a reflection from the window across the road is glaring at me. Someone comes into the office to speak to my colleague, and for a while, they are both animatedly speaking at the same time. Two other colleagues near me are also having a conversation, and for a moment or two, they also are both speaking at the same time. The radio is playing, but I can’t make out what it is. A printer is spitting out some labels, and emitting a staccato burst of noises, reminding me of an old John Foxx lyric; click-click-drone, click-click-drone, click-click… These sounds all merge into one. The office suddenly feels far too hot. My heartbeat is racing. Then, a phone starts ringing. That’s it – I’m almost hitting the panic button from sensory overload. I get up and head straight for the toilet. I go into the toilet, and lock the door. Heart racing, I immediately wash my hands. When I reach for the paper towel, my finger accidentally brushes against the dispenser, and is now contaminated, so I have to wash my hands again. If you ever see me washing my hands or sanitising them when it doesn’t seem necessary, you can take it as a sign my stress level has just skyrocketed. I try to get my breathing under control. Briefly, I’m close to tears, but I pull myself together, and head back to the office, where I immediately sanitise my hands. I see a colleague from a department I used to work on, and we always exchange a couple of jokey comments with each other, so I’m all smiles. No one has a clue what I’ve just been through, because masking has become a habit for me..

I’ve spent most of the afternoon at my desk, and my back is really complaining at me, but for the last half hour, I’m mobile again. I’m looking for a particular item I’m going to have to take to another department. I’m at the location where that item should be, but I can’t find it, which is annoying. I check the item number repeatedly, but the item isn’t there. Frustrated, I go back to my desk, and look up the item on the system. It should be on the shelf, and the person who last logged it in that location is… me. Shit. I go back and look again. It’s not there. Then after re-checking the item number, I see my brain had reversed two digits, so I’m looking on the wrong shelf. I move a few feet to the right, and find the item easily. I’m more frustrated than I can put into words.

17:00. Every clock in the building tells a different time, but my watch and computer say it’s five o’clock, so it’s time to go home. I say my farewells to my colleagues, coat up, and head out. On my return commute, I walk downhill into the city centre, so I only get the one bus journey back to my car. I listen to my audiobook as I walk, finally getting a grip on the narrative. My back is awful, and as a result, I’m walking very slowly. I walk to a bus stop at which I have a choice of five different bus routes to get me home. Unfortunately, they tend to come in batches close together, and if I miss a batch, I have at least 15 minutes to wait for the next one. And because I’ve been walking so slowly, of course I miss the first batch. At this bus stop, no one forms a queue; it’s an uncivilised gaggle of impolite wanderers. I take a position outside a shop, making sure I’m under the fascia that goes all the way up to the overhanging roof, rather than one of the shelf-fascias on which pigeons stand, pooping on the unwary. Among the crowd, I see a young woman who I’ve seen twice before. She’s noticeable because she seems constantly delighted. I place her in the 18-20 age bracket. She’s smiling broadly, headphones on, staring at her phone, and occasionally literally jumping in place, seemingly from pure joy. Just seeing her makes me feel a little better, but I turn away from her, because a middle-aged man like me staring at young women is not cool, and is, in fact, creepy. But I’m happy that she’s happy.

17:30. A bus comes that I can’t use, but thankfully a lot of the crowd at the stop get on it. A few minutes later, my bus comes. I get on. It’s packed, but I manage to grab a seat near the front. After me, a couple get on. I don’t recall seeing them in the crowd at the stop; they have literally just walked up and got on. I try not to judge people by their appearance, but I know what’s coming. They are both drunk, and stink of weed. It’s overpowering. I pray they go to the back of the bus, and indeed, they do stagger down the aisle, swearing loudly at each other. I’m not going to be able to hear my audiobook over them. For ten minutes of the journey, they are effing and blinding at each other, and I pick out the classic line from him to her: “I never fuckin touched her, I’d sooner shag a poodle.” Love is a wonderful thing. Thankfully, they get off soon.

Someone on the bus is coughing, loudly. Again and again. A horrible, hacking cough. A woman across from me takes a mask out of her bag, and puts it on. Unbelievably, the guy from this morning with the high-vis, gets on. He still stinks like the grave. He’s only on for a few minutes, though. The traffic is crawling up the mountainside to where I need to be, but the bus has gradually emptied out, and I’m enjoying some more of my audiobook.

18:15. I get off my bus, and don’t worry about having to cross the busy road to get to my car, as I’m on the correct side of the road. I start the engine, then scrape off some ice. I’m ready to drive home, but miraculously, I remember I need bread and milk. So I have to stop off at Morrisons. This means turning right out of the side road, which means waiting for a break in the traffic, which seems like it’s never going to come. Eventually, some kind driver flashes his lights at me, and I make the move. Once I’m parked up again, I head into the supermarket. I pick up a basket, and briefly look for sanitiser to wipe the handles, but can’t see any. I get my milk, and go to the bread aisle which looks like it has been picked over by a swarm of locusts. There’s hardly anything on the shelves. How are people who work all day supposed to get their food after work? I used to work in a supermarket, and we were in trouble if we didn’t have a decent show of product availability for after-work shoppers. Close to despair, I pick a loaf that has only two days shelf life on it. That’s not much time for a single person living alone. It will be going mouldy before I use it all. There is exactly one checkout open, with three people queueing, so I go to self-scan. I head out, and see a security guard who I used to go to school with. I just smile and nod; I’m in no mood for a chat.

18:45. I get back into my flat. It’s freezing cold, so I tell Alexa to put on my heating. I sanitise my hands, before taking off my coat. Then I wash my hands, twice, for an extended period, before putting my bread and milk away. I close my curtains. Then I sanitise my phone, wallet, watch, and headphones. I strip off my clothes, and stuff them in my washing machine, then wash my hands again. I don’t need to switch on the washing machine; laundry night is tomorrow. I head to the bathroom, have a pee, wash my hands, then have a hot shower, taking scrupulous care to get every bit of me clean.

19:15. I throw on my comfy robe, and stick a ready meal and a bag of easy-steam vegetables in the microwave. I tell Alexa to power up my TV. She tells me my TV isn’t responding. That’s because I forgot to switch on the mains. I pour a drink. The microwave dings. I tell Alexa to power on my TV, but she tells me my TV isn’t responding. That’s because I still haven’t turned on the mains, which I now do. I plate up my food, and take it to the sofa, like any civilised person would. I eventually get the TV going, and a weather presenter is giving a forecast with such furious verbal speed that it must surely be breaking some law of physics. I tell Alexa to turn off the TV. I reach for a couple of capsules of a supplement I take before every evening meal, pop them in my mouth, and realise I’ve left my drink in the kitchen. I put down my plate, and send my knife and fork skittering onto the floor. Fuming, I pick them up, drop them in the kitchen sink, and wash my hands, because they are now contaminated. The capsules are melting in my mouth. I reach for my drink, and knock it over. My heart is hammering. I use a tea towel to mop the side, and paper towel to blot the floor. This means my hands are now contaminated, so I wash them. I pour a new drink (clean glass), and finally swallow the dissolving capsules. I get back to the sofa, and realise I’ve left the kitchen light on. Fuck it. I eat my food. The vegetables are almost cold. I tell Alexa to put the TV on, and I navigate to Disney+ to watch a bit of a guilty pleasure; Once Upon A Time. This show is generally considered one for the girls, but it is batshit crazy, Robert Carlyle and Lana Parrilla are excellent, and I love it.

A meme showing Robert Carlyle as Rumplestiltskin from the TV show Once Upon a time, gesturing animatedly.  The text reads: Autism comes with a price, dearie!

I watch TV for about ten minutes, then my stomach cramps kick in. I deal with it, then take one of my evening meds. By the time I’ve washed my dishes and put them away, and had a bowl of fruit, it is about…

20:30. I’ve done my chores for the day, and my heart rate is finally slowing down a bit. I scroll through social media, message my son, answer a message from my ex, reply to my son’s reply, and finally put my phone down. I realise I’m missing University Challenge on TV, so I use iPlayer, and start watching it on catch-up. After a few minutes, I realise I’ve forgotten to switch on my electric blanket. I pause the TV, and go and do that. Back on the sofa, I take the last of my meds. By the end of University Challenge, I’ve answered eight questions correctly, all more quickly than the contestants. Six of my correct answers were educated guesses. Three of the questions I got wrong were also given the same incorrect answers by contestants. The show gets paused a couple more times, for me to get a drink, and to get a further snack.

21:30. My second meds have kicked in, and my eyes are closing. I tell Alexa to shut down various devices, and then I manually turn off the relevant mains, because, as any British person my age will remember, you have to… Get a routine, show your intention’s fire prevention, fire prevention, check and make sure you close every door, we mean, your life could depend on your bedtime routine. That song is stuck in my head as I go to bed. I brush my teeth, taking care around the problem tooth. I have a pee, then wash my hands. I walk into my bedroom and… oh shit. I switched on my electric blanket, yes, but I forgot to pull the duvet up, so the heat from my blanket has largely dissipated. The bed is barely warm when I get in. I put my phone on charge, tell Alexa to start up Ocean Sounds, and I pick up my Kindle, to get back into the adventures of Uhtred of Bebbanburg.

22:45. I wake up with my kindle on my face, and my reading glasses askew. Momentarily, I haven’t got a clue where I am or what I’m doing. Ocean Sounds is playing. I decide to go for a pee, then wash my hands. I get back into bed. Something doesn’t feel right. What is it? Ah, I haven’t opened my bedroom window. I get up and do that. I get back into bed, reach for my Kindle, but my eyes are closing. I put my Kindle and reading glasses down, and sweet oblivion comes.

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So, that’s pretty much an average day for me. That’s all for this week. Until next time, take care.


You can find The Autistic Writer on all your favourite social media channels

Why Do I Write This Blog?

When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism.  I quickly learned that there was a serious shortage of information and resources for adults in my situation.  With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery.  Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers.  I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.

You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.

One thought on “Part 122: A Day In The Autistic Life

  1. This reminds me of many of my own experiences before and after (finally!) being diagnosed with autism. I certainly had the “wait, did I lock the door, or did I just think I locked the door” adventures. I also tended to show up where I needed to be up to two hours early exactly *because* of the bus experience.


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