Hello, and welcome back to The Autistic Writer. It’s good to have you here. That last week seems to have gone by in a blur, and definitely not in a good way. Last weekend, I’d started to feel a little off-colour, but I put it down to the stress and exhaustion that had accompanied the breakdown of my marriage, and finding a new home, the difficulties around which I’ve already talked about at length in this blog, so I’m not going to rake it over again. Anyway, it turns out the slightly unwell feeling I was experiencing was a bit more than stress. Monday morning, I made my park-and-ride journey to work, and was on the bus when I started to feel quite ill. I felt hot, headachy, and worst of all, I was coughing – a lot – and my chest hurt when I coughed. It couldn’t possibly be covid, I reasoned, because I’d just had my third jab, and a negative lateral flow test. But this cough did not feel right; I could tell something was wrong. I got off the bus, and out of curiosity, checked the NHS covid-19 app to see if there was a symptom checker on it. There was. Not a very good one, though, and as soon as I keyed in yes to “have you got a new and continuous cough”, the app told me to self-isolate. This seemed odd, as it didn’t ask me if I was vaccinated, or if I’d had an LFT. The upshot was I could not attend work, and I had to go and get an immediate PCR test. I completed the test at a drive-through centre, and later that day, on the dot of 5pm, I received a text message saying the test was negative. Excellent news. Except, by this time, I was feeling very ill indeed. I’m not going to go into detail about all the symptoms I was experiencing, because some of it is a bit gross. But it was not good. My coughing was pretty much constant, and extremely painful, and I felt really unwell. I have considerable experience of bacterial lung infections, having spent years laid low by them, as regular followers of the blog might remember. I contacted my GP, explained the symptoms, and was given a seven-day course of antibiotics. I’m more than halfway into the meds now, but still feeling lousy. The minor irony here is that, feeling too unwell to do much, I’ve spent almost all the week indoors, as if I was in quarantine for covid!
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This has led to me feeling very isolated. My life has been turned upside down by the recent personal issues I’ve had to deal with, and I could really have done without a bout of illness, just now. With my marriage over, a non-existent social life (which, to be fair is not always a bad thing for me), and not even being able to go to work and mix with the colleagues I really like, the sense of isolation can be pretty bleak. And I’m saying this as someone who enjoys his own company.
This alone period has had an interesting effect, though. Now all the disruption around moving into a new home has calmed down, I’m not under pressure to do as much stuff, and so being alone at home has left me with plenty of time to think and reflect on my life. I’ve come to a number of important conclusions that are all, in some way, related to being autistic. And that’s what I want to talk about this week…
In 1964, the legendary TV show, The Outer Limits, screened an episode that has gone down in history as one of the best science fiction stories of all time. In The Bellero Shield, Martin Landau plays a scientist struggling for professional and personal recognition. His ambitious wife Judith (Sally Kellerman), violently attacks a friendly visiting alien (John Hoyt), in order to steal his force field technology, which she believes her husband can use to advance his career. Unfortunately for her, Judith finds herself trapped inside the force field. The injured alien frees her, but due to some kind of mental crisis, Judith continues to believe she is trapped. The story is widely interpreted as a riff on Macbeth, and this seems reasonable. Most analysis of the episode focuses on either the Macbeth aspect, or the hypothesis that the episode influenced one of the most famous real-life claims of an encounter with extraterrestrials, the Barney and Betty Hill case. But I was always more fascinated by the idea that someone could imprison themselves through their own thoughts or feelings. I’ve started to wonder if that’s something I’ve done to myself.
It was in 2015, around my fiftieth birthday, when I started to realise there was something seriously wrong in my life; when I started to understand that I was different in some fundamental way from pretty much everyone I knew. I’ve talked previously about how this feeling precipitated a prolonged mental health crisis that eventually, four years later, led to me being diagnosed as autistic. During the six years, from that first dawning realisation that I was very different from other people, and indeed from who I had always tried to be, up until now, I can see that I have spent most of my time living reactively. While there have been times when I have tried to take control of my life, these attempts have generally not ended well, and have come at times when I have been under almost unbearable pressure, and not thinking clearly. So I have stumbled from one crisis to another, barely putting out one fire before one, two, or three others ignite….
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I cannot honestly say I have ever been happy in life. Happiness, at least the way I think I understand it, is alien to me. I experience pleasure, and joy at certain times, but being happy in life generally? No. Much of this is down to my personal autistic experience of the neurotypical world, of course. I’m not alone in that autistic experience, either. But when I look back at the times in my life when I have been least unhappy; when I have flirted with contentment, those times coincided with me feeling that I was in control; professionally, financially, and domestically. By being in control, I mean not being in crisis; being able to make decisions when not under pressure, and being able to take actions to improve my life. But for at least six years now, and probably for longer, I’ve just been trying to stamp out fires, and getting my feet burned. I’ve become used to it. I’ve been allowing it, to some extent, to happen to me, because my self-confidence has been shot to shit. This has come on the back of physical health issues, mental health issues, and a long crisis of doubt about my ability and future as a writer that lasted from 2015 to 2019. In that period, I honestly thought I would never write again. My third novel, Aberrations, lay gathering dust, incomplete. It was a shock when the urge to write returned, soon after I had started to come to terms with being autistic. But writing has been one area of my life in which I have been able to regain some control. This week, I started the third and final draft of Aberrations. I hope to have it on sale before Christmas. The feeling of satisfaction from working through this marathon of a project is immense. Reflecting on this has enabled me to make some important decisions about other areas of my life. Decisions that involve trying to make good things happen for me once more. At this moment, it would be imprudent of me to go into detail about what these changes are, but hopefully, over the coming weeks, I will be able to share more. I’m not entirely sure what I will achieve in the end, but simply trying will have its own benefits.
One decision my reflections have led me to, is that I will be very careful about who I disclose my autism to in future. That might seem an odd thing to say considering I write a public blog about autism, and tweet about the autistic experience all the time. But not every person in the world reads the blog or my tweets. I’m not going to actively hide being autistic, and I would never lie about it. But I’ve learned the hard way that coming out to people you don’t know that well in certain situations can result in discrimination and micro-aggressions that are hard to deal with. I can be quite combative at times, and generally have no problem standing up for myself against anyone. But there are certain situations in life in which you simply cannot fight back in the way you want to; the social or professional structures and hierarchies around you prevent it. Experiences I’ve had since my diagnosis and coming out have encouraged me to be more cautious in future, and I feel horrible saying that. It shouldn’t have to be that way, but the truth is that autistic people are discriminated against. And we are abused, neglected, misunderstood, and often hated for no reason other than being a little different. And for this reason, I know that while I might have created a little mental force field of low confidence, self-doubt and reactivity to trap myself in, there is also a real invisible force field out there imprisoning all autistic people; it is the neurotypical world.
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I can’t finish this week without giving a proud mention to all those autistic people who attended the #BoycottSpectrum10k protest. The pause in operations that Spectrum 10k had announced has ended and they are now resuming their abusive eugenic activities. A typically ephemeral and meaningless tweet from Simon Baron-Cohen mumbled about consultation, but it’s clear he has learned nothing from our concerns, so we will have to continue our resistance to this horrible project. I couldn’t go to the protest, but to all you autistic folks that did – thank you; you are amazing.
That’s all for this week. Enjoy your Halloween celebrations, if that’s your thing. 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.
The Autistic Writer 