Hello and welcome back to The Autistic Writer.
It’s been a hell of a week. In fact it’s gone by so quickly, I feel like time has speeded up and I’m living in some kind of time warp. Or maybe that’s just something to do with the books I’ve been reading (see below).
On Monday, I went back to the office, after being off work for several weeks due to my recent mental health crisis. I’m fortunate enough to work with some really good people, and I have no cause for complaint in terms of how I’ve been treated. Settling back in has been as easy as it can be for someone like me who lives in a perpetual state of anxiety. Of course, my anxiety has not been helped by the continuing upsurge in Covid-19 infections. My area is now on high alert. I’ve had a couple of really troubling moments on public transport as a result, when people haven’t worn masks, or haven’t respected social distancing.
Apart from that, things seem to be settling down for me. Almost all the snagging on the new bathroom has been completed; we’re just waiting for the correct extractor fan now. The bathroom guy keeps promising, but my patience is starting to run out. The lawn on the new garden, which I foolishly over-watered, is calming down. The writing is coming along nicely, and overall, I feel more positive than I have for a while. One frustration is my deteriorating eyesight and hearing. I’m going be talking about hearing in the context of autism in The Aut Files section of the blog, further down.
I can’t let the last week pass without mentioning Ronnie Phillips. Ronnie is a 12-year-old autistic boy from Crawley in the UK. Some other kids gave him an alcoholic drink mixed with bleach. Ronnie ended up on life support in hospital, but is now, thankfully, recovering at home. It’s difficult to know what goes through the heads of people, even kids, doing something like that to another person. They knew what they were doing – you don’t put bleach in a drink by accident, do you? And they gave it to the autistic kid. We’ve got a long way to go on this planet before we are a decent human race.
This week, I’m going to be talking about…
Progress on the new novel, and the creative decisions I have to make.
The steps I’m taking to improve and track my mental health and wellbeing, and what I’ve been reading over the last week.
The Sound Barrier: All through my life, I have had a problem with my hearing. Only now, in my fifties and with an autism diagnosis, am I starting to understand exactly what that problem really is.
I’m really happy to say that I’ve managed to write a little every day again. I’ve typed 4,463 words on the novel over the last seven days. When I was at my healthiest and most driven, I was able to write that amount in one daily sitting at the keyboard, but I have to accept my new lower limits. In any case, the most important thing is the quality of the work. It’s all going in the right direction. Yet again, I’ve had to fiddle with the chapter structure. I always plan a novel in detail in before starting proper writing. I write biographies of the characters, descriptions of key locations, a timeline of backstory, and I outline every single chapter. Some of the chapter outlines have to be very detailed, others are just more of a one-line note to myself. One chapter outline was basically a couple of sentences telling me that this is where [Character C] answers [Character A’s] questions, and explains what is really going on [as he understands it]. Well, when I came to write this one, there was a danger it could turn into a huge information dump, with not much story. I really had to think it through. The development of the relationship between these two characters is really important. Initially they are in conflict, but kind of become allies, leading to the exchange of information. Their relationship igniting is the story of this chapter, not the exposition. How could I resolve this conundrum? I was helped by a wonderful thing that sometimes happens in writing. I mentioned I write biographies of my characters in the planning stage. Some of these are extremely detailed. Others, for support characters who might only have a small part in one or two scenes, are less detailed (although, they are just as real to me). One such support character was present in this chapter, and she became pivotal as a kind of referee between A and C. She was immediately full of personality, and I think when my readers get to this part, they’ll love her, and enjoy the humour and heart she brings to the scene, and they won’t even feel like they have just undergone a huge information dump. However, the structure and length of the scene made me decide to split it into two chapters, for greater dramatic impact. I have now completed 38 chapters, and started chapter 39, out of a revised plan of 60. The satisfaction and contentment I derive from writing really is amazing. Working with the structure of a long story, and seeing the words and chapters, and story developments, stack up to create this pattern of ideas is hugely therapeutic, and gives me a sense of routine that helps keep my autistic anxiety in check.
The Aut Life
A couple of months ago, I put together a little tracker on a spreadsheet, to monitor my wellbeing on a daily basis. I have a column for each day, and there are nine points that I score myself on, daily. These nine points cover what I’m doing (activities that I know are good for my mental health, such as physical activity, reading, writing, diet, and so on), how I’m feeling mentally and emotionally, and the physical co-morbidities of my autism. Each of the nine points gets scored either as red (bad), amber (caution) or green (good). A green equates to +1, and amber equates to 0, and a red is a -1. This means my total daily wellbeing score can in theory range from -9 (really bad) to +9 (really good). Most of the time, my actual daily score has been between -3 and +3, although when I had my recent crisis, my scores dropped accordingly. But last Wednesday, I recorded a score of +8; everything was green, except for my anxiety, which remained amber. Still, it was good to see those colours. There is a kind of positive feedback loop when I carry out activities I know are good for mental health. The more I do good things, the better I feel, and the better I feel, the more likely I am to do the right things. Seeing the reds, ambers and greens on my spreadsheet is a great motivator.
However, I know the converse of this situation is also true. A serious enough anxiety trigger will shatter my mood and confidence. This will be enough to demotivate me. And if I see the reds start to pile up, I suspect I might become more demotivated, and end up in a negative feedback loop. Whenever I have an anxiety crisis (I’m not talking about a daily anxiety attack, here, but more of a full-blown meltdown), I know from experience that a period of serious depression will follow. Depression is a bitch. I’ve only been using using the tracker for a couple of months now, and I’ve come through one crisis in that time. Now, I want to try to future-proof myself against future crises. I don’t think it’s possible to 100% protect myself against future problems, but there must be something I can do, now I know my anxiety and depression are driven by autism. I was interested to read that Temple Grandin has been successfully using low-dose anti-depressants for decades to combat anxiety. I’ve used anti-depressants sporadically over the years at times of crisis, but I’ve always vaguely felt they were a bad thing, and that I should try to get back off them as quickly as possible. Particularly as some of them have unwanted side-effects. However, Temple Grandin’s experience has made me think again. I’ve discussed the situation with my GP, who has gone away to talk to a pharmacist about it, to see if they can find a drug that will control my anxiety, but not give me the unwanted side-effects. She’s going to come back to me with some suggestions. I’ll see how it goes.
Reading regularly has a calming, positive effect on my mental health. This week, I finished Paul Davies’s book, The Demon in the Machine – the book I mentioned last week that has made me so angry (bizarrely, even reading an annoying book still counts as reading, and still has a beneficial effect). I’m going to give it two stars. Davies is clearly a highly accomplished, renowned scientist, and his explanations of molecular biology and quantum physics have really fed my inner nerd. But some of his flakey conclusions in this book are infuriating. He has cherry picked a couple of out-of-context quotes, and come to some odd conclusions. Really, not recommended reading for a logical thinker, and my opinion on this is in agreement with a number of people in the science and medical communities who are a bit bemused by what appear to be the vaguely Intelligent Design tendencies of Davies, and his appeals to unknown mysteries of the quantum (cue spooky music).
I also finished The Way I See It, a collection of previously-published articles by the aforementioned Temple Grandin. She really is the guru of autism. The information contained in the articles, along with practical advice, is quite incredible. Much of it is aimed at the care of autistic children, but there is still loads of stuff relevant to the late-diagnosed adult like myself. I don’t agree with everything Grandin has to say. Like all of us, she is a product of the time in which she was born, and of her upbringing. Her mother has clearly done a great job of raising her, but Temple Grandin, as she often mentions herself, was raised in the 1950’s. It was a different world, with different standards, and a greater expectation on people to conform to the establishment, and bow to authority figures. Times have changed significantly, and Temple, wonderful person that she is – and I respect her immensely – does have a few outdated social ideas. Nevertheless, I would recommend this book wholeheartedly.
I’ve started another audiobook, A Question of Time; a series of previously-published articles from Scientific American on the nature of time. It discusses some fairly high-level physics, but is an absolute treat for me, as I love this nerdy stuff. I’m now wading through my to-read pile to decide on my next fiction read on Kindle.
The Aut Files
The Sound Barrier
The autistic brain processes information differently to the neurotypical. This much is obvious. And it does often include something called Sensory Processing Disorder (SPD). This disorder can affect any of the senses. Often people have difficulties with sight. Sometimes, autistic people can struggle with the flickering of fluorescent light, for example. Some people struggle with their sense of touch, and find certain textures or fabrics utterly unbearable. It can also affect hearing, and this is something that is a massive problem for me.
What I’m going to talk about here is, I think, likely to make some people ask the question How could you have got to the age of 55 and not have realised or found out earlier that you had a sensory processing disorder? The answer to this is not as simple as you might think, and it necessarily overlaps with all aspects of autism. I’m going to discuss the reasons for, and implications of, non-diagnosis into adult life in a future blog, because it deserves a discussion all of its own. For now, I’d ask you just accept that delayed diagnosis is common, and has serious implications, not just for me but for countless other people on the spectrum.
I’ve talked in previous blog posts about masking, and how I managed to mask autism for decades without realising I was doing it. Basically, I was trying to fit in and work around my various social interaction anxieties. This included trying to cope with not hearing things very well.
As a young man, I spent a lot of time in noisy pubs with friends. I kind of just accepted the fact that I would drift out of conversations because I couldn’t hear. I remember thinking that it couldn’t just be down to background noise that I couldn’t hear people, because everyone else was conversing just fine. But I was also busy dealing with the anxiety of being in a crowded noisy place. I generally coped* with that by getting very drunk very quickly, at which point I didn’t even care who was talking and what they were saying anyway.
One thing I found over the years is that people don’t like it when you can’t hear what they say. You can say what? a couple of times maybe, but after that, often people get really pissed off. And if it’s a group conversation, sometimes you don’t even get chance to say what? To cope*, I mastered a number of compensatory skills:
- Extrapolation. I would pick up what fragments I could from the things people were saying, and use context and intuition to try to work out a more complete picture of what was being said.
- Non-Committal Answers. I got really good at this. A grunt, a smile, a raise of the eyebrows, a nod or shrug: These were invaluable tools in situations where I couldn’t comfortably ask someone to repeat something, perhaps for a third or fourth time, or in group situations. A non-committal response allows the others to choose to believe you agree with them.
- Changing the subject. If the situation warranted it, I could ignore what someone had said, and deftly change the subject. It’s a high-risk tactic, but if you can pull it off, it can really save you some embarrassment.
Did I really live my life like this? Sadly, yes. To understand why takes some time, and like I said earlier, I will explain this type of life in a future blog.
I didn’t totally ignore my hearing problem. Back in 2007, I began getting tinnitus, after hearing a loud clang of metal at work. It gradually got worse, and after a couple of years I would sometimes wake up to screaming-pitch ringing in my ears. Other times, I would wake up to quite a pleasant sound that was like hundreds of birds singing outside my bedroom window. But most of the time, it was awful, and impaired my already problematic hearing. I got an appointment with an ENT specialist, who could find no problem with my ears. He was extremely unsympathetic, and laughed off my claim that the tinnitus had started after I heard clanging metal. He sent me away with no answers, and no help.
My hearing continued to deteriorate. I started having to use the subtitles on any TV broadcast I watched in order to be able to make sense of it. I found that if I asked people to repeat things, they would speak more loudly, which really wasn’t helpful. I began to understand that my issues were not with volume of sound, but with clarity of sound. So if someone spoke more loudly, I would just hear a louder mess of noise, and not necessarily understand what was said, in which case I would fall back on my three compensatory skills. An added complication was that occasionally, I would think I have heard something correctly, but I would have got it completely wrong, and given a response that left people confused.
Then, around 2017 I think, I saw another ENT specialist who was appalled by the way I had been handled previously. Tests revealed a definite problem with my hearing, especially at certain frequencies. I was given hearing aids. In retrospect, I probably didn’t explain the full nature of my hearing difficulties to the specialist well enough. And importantly, at that time I did not know I was autistic. Anyway, the hearing aids did not help, for the same reason people speaking more loudly didn’t help; they just increased the volume of noise, including competing sounds. I gave up using the hearing aids, and kind of accepted my lot.
Fast forward to now, and my autism diagnosis. I’m doing everything I can to learn about my condition, and that means a lot of reading about the experiences of various autistic people. After reading accounts of some other autistics with sound-processing difficulties, I was gobsmacked. I was reading things, and thinking, That’s just like me! I now have zero doubt that my hearing difficulties are predicated on an autistic sensory processing problem.
I appear to have two sensory issues going on:
- Sensory focus. Like many autistic people, I am capable of focusing intensely on one thing. Sometimes I do it without realising I’m doing it. What this means is I sometimes tune out other things. So if someone starts speaking to me when I’m not expecting it, the chances are I won’t hear the first few words they say. Sometimes I won’t hear anything they say, until I become aware of someone going, “Darren? Darren? Hello? Are you awake?” People tend to find this funny. I laugh along with them, while inside I am in a state of distress. This is, by the way, an example of masking; covering up how you really feel.
- Sensory processing. Sometimes, I just cannot hear what people are saying. I hear words, or noises at least, but I just cannot mentally translate those sounds into something that equates to words in my head. It’s most difficult when there are competing sounds. Someone talking to me while a phone is ringing, or when a door slams, is going to have a difficult time making themselves understood. Sometimes, the focus problem overlaps with the processing problem. So, if I miss the first three or four words someone says to me, but then start to focus, I still can’t hear the rest of what they say properly because I missed the first part; my brain can’t get to work on it.
As I said, people get annoyed and frustrated when you can’t hear them. Along with compensating by pretending you have heard something, and attempting an appropriate response (a habit I’m trying to break, but it has become ingrained), the net result is exclusion, isolation and loneliness. There are many ways an autistic person can feel like an outcast and a misfit, and the sensory processing issue just adds to it.
Happily, some people are learning how to deal with me in light of the autism. I’ve noticed certain people will now make sure they’ve got my attention before they start giving me any detail. Sometimes, someone just saying, ‘Darren!’ and then pausing a moment before they go on, is all I need. I cannot tell you how much I appreciate this small consideration. It makes my life so much easier.
What does make things more difficult just now is everyone wearing masks! I don’t lip-read as such, but I do find it easier to hear speech when I can see someone’s whole face. However, I accept the pandemic situation for what it is. Wear a mask!
What is it like to have my sensory processing issue? Here are some examples:
Example : When you think you’ve heard something correctly…
What I hear: “It’s a tip outside, can you walk the garden?’
Me: Thinks it through: There’s some mess in the garden. I need have a walk around, and clear up. I go outside, can’t see anything wrong, and come back in puzzled. “It looks okay out there to me.”
“What? I said, can you nip outside and water the garden!”
Example : When someone hasn’t got your attention, and there are competing sounds…
What I actually hear: “………………………………………………………. Hat today. We said we’d look at it there to see. Can you google some places?”
What I extrapolate: Something about a hat today. Did I agree to go hat shopping? I start to google hat shops. Me: “Believe it or not, there’s actually a hat fair at the market today. I bet you’ll get something there.”
Response: “What are you talking about?”
Me: “You asked me to google some places you can buy your hat. Ah, you didn’t did you?”
Response: “No, I said remember we’re meeting Bob and Laura** this Saturday. We said we’d book somewhere to eat. Can you google some places?”
Those are not real events, but they give a pretty accurate picture of what it can be like. Not being able to hear properly is awful, and it is all too easy for people who are self-conscious of their hearing problems to fall into ridiculous, unhelpful habits as coping mechanisms, the way I did from childhood. If you know someone who has hearing or audio-sensory processing issues, I give you this advice when speaking to them:
- Speak with clarity, not loudness. Enunciate.
- Get the person’s attention before saying what you need to say.
- Let the person see your face (if possible, Covid-19 permitting) when you speak to them.
- Don’t carry out shouted conversations from separate rooms.
- At work, email a message rather than make a phone call.
- Be patient and sympathetic.
- Don’t leave people out of group conversations.
* “Coping”. Some people would say this is not coping at all, but it is what’s known as a coping mechanism, regardless of how effective or appropriate it is.
**Bob and Laura: Apologies – I am a Twin Peaks nerd, and I can’t resist an opportunity.
That’s all I’ve got for this week. Thanks for stopping by. And please, please, stay safe. The Covid-19 pandemic is a living nightmare, but the risk does not go away just because you are fed up with it. Do the right things; wash your hands, wear a mask, socially distance when appropriate, stay safe, and take care of yourselves.