Hello, and welcome back to The Autistic Writer. Thanks for coming, it’s good to have you here. How are you? Me, well, I’m still trying to shake off my horrible cold, and I’ve had a difficult week for several reasons. I’m still waiting for a date for my MRI scan to see what the deal is with the disc pressing on the nerve in my spine. While the pain has reduced significantly again over the past few days, I have now started getting this weird tingling sensation in my leg, which sometimes feels like electric current running through it, and sometimes feels like insects crawling over my skin. Very strange. A further problem this week has been that the sale of my house has fallen through. We’d even signed the contracts, but it fell down at the exchange stage, and I still don’t know what’s going on with the buyer, or why their solicitor is suddenly not communicating. My domestic situation is very problematic right now, and I desperately need to get this sorted. But enough about my problems; let’s talk about my, uh, problems. Well, not exactly. But in this week’s blog, I want to share some reflections about my personal autism experience. Here we go…
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Back in the eighteenth century, when the word internet referred to communal supplies at the fishing village, loudmouth philosopher, writer and whatnot Samuel Johnson got a bit hot under the collar when he heard about Bishop Berkeley’s latest idea. Berkeley was saying, at least in Johnson’s interpretation, that nothing is real; things only exist in your mind, because you think they exist. Not one to pause for in-depth analysis or introspection, Johnson kicked a stone, and famously cried, “I refute it thus!” Of course, Johnson had missed the point of what Berkeley was really getting at – the short form of which is that the true nature of reality may be very different from what we think it is based on our sensory experience. But whenever I think about Johnson’s toe-breaking refutation, and what Berkeley was really proposing, it puts me in mind of something directly relevant to the autistic experience. Sometimes, as Berkeley was pointing out, when you see, you’re not necessarily really seeing what’s really there. And as Johnson showed with his refutation, sometimes people just choose not to see what they don’t want to see, because they don’t want to see it. If you see what I mean.
There is a well-known episode of the cult TV show, Buffy the Vampire Slayer, titled, Out of Mind, Out of Sight. Now, before discussing anything about Buffy, there’s no getting away from the nasty revelations about the show’s executive producer and creative guru Joss Whedon. I was a big fan of Buffy, but it’s difficult to see it the same way after learning about Whedon’s behaviour. My referencing of this show should not be taken as approval of Whedon – far from it. But the show had a cultural impact that can’t be denied, and its enduring popularity is a testament to the actors who suffered under Whedon. The particular episode I’m talking about here was written by Whedon, so that sucks, but the story raised an interesting thought. In this episode, the high school is terrorised by an invisible attacker. It turns out this attacker is a disaffected pupil, Marcie, who turned invisible due to constantly being overlooked, ignored, and so on, by teachers and classmates. Marcie, who is not being seen (acknowledged, accepted) by the people around her becomes truly unseen, unseeable, and other. Like most of Whedon’s metaphors, it’s about as subtle as a sledgehammer. But it does have something to it. Many autistic people will identify with the trauma of being left out, isolated, unfriended and so on, at school. It’s not fun. But it doesn’t go away after school. This issue of being othered by neurotypicals can be lifelong for many autistic people. I often find myself thinking, Why am I not being listened to? Why am I not being acknowledged? Why am I not being seen?
I had a conversation with a neurotypical person, this week, let’s call him Kevin, who was interested in what I had to say about my sensory overload issues and triggers. I explained that, for me, it works incrementally. If I’m just dealing with one trigger, say too much bright light in an area, I can deal with that. Then let’s say it gets noisy too; now it’s uncomfortable. Then more noises emerge, so that different types of noises are conflicting. They don’t even have to be that loud, just conflicting noises. At this point, I’ll struggle to differentiate sounds, and won’t be able to hear what people are saying, and for some reason that triggers real anxiety in me. Now it’s getting quite bad. Then add in some people standing around me; in particular, standing behind me. Now, it’s becoming unbearable, and I’ll be feeling physically ill. I think that’s a half-decent, if quick, explanation of how it can work. But Kevin wasn’t really listening. Kevin said, “But you’re always going to find someone standing behind you, or some kind of noise nearby, or some lights, so you’d be triggered all the time.” Other similar comments followed. It got to the stage where I had to stop Kevin, and say, “my autism doesn’t have an on-off switch. It’s not like one triggering element leaves me incapacitated. You’re aware I’ve been living and doing things for fifty-six years, right? Sensory overload is incremental. If you really want to understand autism, you have to listen to what autistic people are saying, not just have these preconceptions.” In that conversation, I had been talked over, ignored, and misinterpreted. It was like I wasn’t really there; Kevin was just reeling off his preconceptions without acknowledging and processing what I was saying. I was effectively invisible. We cannot achieve social acceptance of autistic people until the neurotypicals start listening and seeing.
Something else happened to me this week. This incident could have happened to anyone, I guess, not just an autistic person. But there was an autism-related element to it, as you’ll see…
For many years, I used to drive everywhere; to work, to the shops, whatever. I disliked using public transport, because buses are often too crowded, noisy and unhygienic; all major triggers for me. Unfortunately, I also find driving very stressful. I’m a pretty good driver; I’m very road-aware, and usually spot other drivers’ errors well in advance. Over the years I have had two minor collisions but in both cases, the other drivers accepted full responsibility. It’s the willful stupidity and carelessness of other drivers that stresses me out, and at one stage when I was having to do long driving commutes every day, I couldn’t take it any more. I had to stop. Eventually, I got a job closer to home, and decided to use public transport every day. That meant getting on the crowded buses every day, which is problematic, but better than car commutes. Still, I had to find a way of mitigating against the triggers that come with being on a crowded bus. I started going out earlier than necessary, when the journeys are less busy. And I invested in some really good noise-cancelling headphones. I listen to audiobooks on my bus journeys, and with all the noise filtered out, it can be quite a relaxing way to get to and from work. With this in mind, let me tell you what happened on my journey to work this Friday…
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I change buses in the city centre. Friday morning, I just miss my second bus, and so I wait at the stop for the next one. I’m going to be late for work, now; a major stressor for me. So, before I’m even on the next bus, I’m in a heightened state of agitation. A queue builds up, but I am first in line. Soon, the 52a pulls up; a single-decker, with hardly anyone on it. There doesn’t appear to be anyone getting off, and so when the doors open, I get on, and flash my card at the scanner. The driver is gesturing to me, and I see my card hasn’t scanned, so I try again. As I’m doing this, I see two young men on the bus have stood up, and are getting off. I move to one side, and mumble an apology for being in their way. The driver is talking to me, but I’ve got my noise-cancelling headphones on, so I can’t hear him. I hit pause, and take them off, and apologise for not hearing him. He’s in mid-flow of telling me off for getting on the bus. I’m confused. He says he told me not to get on, as some people were getting off (the two young men). Again, I apologise, both for not hearing him, and for not realising there were two people getting off. I try to explain about my headphones. The driver says it is not his problem I had my headphones on. I don’t know what to do. I apologise again, and ask if I’m okay to board the bus now, and the driver scowls at me and nods. The passengers on the bus, and those behind me waiting to get on, are all hearing this. I’m now so self-conscious and stressed out, I’m sweating and shaking. I scan my card, but I can’t focus on where to sit. I end up wandering all the way to the back of the bus, and take a seat there. The bus fills up, all seats taken, and people standing in the aisle. This is the most crowded bus I’ve been on in ages. It’s horrible. The sensory overload, and tight proximity of so many people is awful. I try to listen to my audiobook, but I can’t focus. I’m close to breaking down in tears. When I need to get off, I’ve got to excuse me past so many people. I usually try to sit close to the doors, so this is incredibly uncomfortable for me. When I get off, my stress is turning to anger. I take a photo of the bus’s registration. I’ve since followed it up with a written complaint to the bus company. The bus driver wasn’t to know I’m autistic, obviously, although that kind of rudeness would have been unacceptable to anyone, not just an autistic person. But here’s the thing: He didn’t know I was not autistic, either. He didn’t know me at all, so had no idea what kind of issues I might have been experiencing. He just assumed I was being an arsehole. It wasn’t my fault those two young men who wanted to get off the bus were still sitting down when the bus stopped and opened its doors. And they didn’t really have a problem getting off – I’m not that big an obstacle. The driver’s reaction to a tiny misunderstanding was completely over the top, rude, and unprofessional. Presumably, unless he’s been living under a rock, he knows there are different types of people with different requirements and issues, and your default condition when dealing with the public should be patience and understanding. But I was invisible to him as a human being; I was just a thing that had not complied with his command.
If this driver does, say, seven one-hour journeys a day, with a very conservative estimated average of perhaps fifty passengers per journey, that means he’s dealing with 350 passengers a day, or 1,750 passengers a week, so probably at least a couple of dozen autistic passengers every week. That’s before we get onto other disabled passengers. It’s not a great attitude from the guy, and I stand by my complaint. But I hope he gets some training, because disciplinary action will solve nothing.
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On a lighter note, let me tell you about what happened Friday night…
I decided to pop around to the corner shop, to pick up a couple of bottles of wine. As I waited in the short queue to be served, I decided I wanted some chocolate as well. I put my two bottles of wine on the counter, told the person behind me in the queue they could go ahead, and I went to find chocolate. I came back a moment later, bar of Galaxy in hand, and saw a woman in the queue picking up my wine bottles and having a look at them. “Oh, I’m sorry,” I said, “they’re mine, I just put them down for a moment.” She smiled – a very pretty smile – and apologised. “Oh, it’s fine,” I said, “It’s good wine, I can recommend it, there’s some more on the display, there.” She blushed, and what followed was a couple of moments of gentle flirting between us, while the cashier smiled on. This was weird. I couldn’t remember the last time I’d flirted with anyone. I mean, when I was younger, flirting behaviours were part of my armoury of masking; being a ladies man (ugh, I cringe now) was part of the outward persona that I could pretend to be. And here, all that flirting skill came rushing back in a reflex, like having my knee hit with a hammer at physiotherapy. Although, maybe not quite as successfully as I’d first thought. It was about an hour later when it dawned on me that when this woman smiled at me and said, “Enjoy your wine,” as I left the shop, instead of me joking, “Oh, it’ll keep me going for half an hour,” I was supposed to have said something like, “Why don’t we enjoy it together?” Or maybe something a bit cooler, and not so blunt. But you get the idea. I should maybe leave flirting to the younger generation.
That’s all for this week. Until next time, take care, be good, stay proud.
Darren
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.
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