Hello, and welcome back to The Autistic Writer.
How have you all been for the past week? It’s been up and down for me. If you’ve been following the blog for a while, you’ll know I’ve recently been dealing with heightened levels of anxiety. I’ve had some good days over the past week, and some really difficult days. I’ve been using ad-hoc meds on the bad days when necessary, but I now have to face a decision on whether I will go on longer-term daily meds to manage the situation. I’ve tried this before, unsuccessfully due to side effects. I need to think this through, and talk to my GP, but I’ve got to wait over a week for an appointment.
On the upside, the novel in progress, Aberrations, is coming along nicely. As far as our house renovations go, we are still waiting for the correct extractor fan to be fitted in the new bathroom, but having spoken to the owner of the company that did the work, I understand the difficulty he has hit, and I trust him to sort it out shortly. We had the landscape gardeners in, and I have to say they have done a fantastic job! It was worth every penny we spent on it, and it was almost worth the noise and disruption, which I found extremely challenging in my current mental state. But it’s finished now, the guys who did it were great, and it looks amazing. (If anyone wants a recommendation of a good landscape gardener in the Sheffield area, just ask me.)
I’ve been thinking about my childhood a lot recently, as I continue my search for context around my autism. This has led me to consider the question of nature versus nurture – one of the thorniest issues in autism. I’ll discuss this in The Aut Files section of this week’s blog, below. But first…
Over the last seven days, I’ve written a total of 4,304 words on the first draft. Various issues through the week have distracted me from writing so, although I would have liked greater output, I have to be pleased, particularly as I have written a little every day. Habit and routine is important for writing, as well as being good for my mental health, so I’ve got a double bonus. I’ve completed chapter 33, and started 34, which is going to be a difficult write, because the subject matter in this part of the story is as dark and disturbing as it can get. There is another chapter coming up soon which also plumbs similar depths of psychological evil. It’s mentally exhausting getting into the head of a character who is absolutely committed to causing terrible harm to other people.
The Aut Life
Autism is not an illness. It is not something that can be cured. This much, most people now accept. But functioning as an autistic person in a largely neurotypical world means undergoing immense mental and emotional stress, which leads to mental illness, such as depression and anxiety, and that’s where I am presently. The question I have to ask myself right now is, am I recovering? The crisis of a few weeks ago is in the past, but the lingering depression and anxiety are not. I do seem to be having more good spells, but just yesterday, I was reminded how fragile any recovery might be when the combination of a few simple events and difficulties left me feeling like I was on the edge of an abyss. This brittleness in my mental strength is one of the reasons I am going to speak to my GP about using meds. But the side-effects I’ve experienced previously concern me, and I do not want to swap one trigger of anxiety for another. The irony here is that worrying whether I should go on meds or not is likely to trigger anxiety. I’m trying not to go down that route, though. As the protagonist in Aberrations might put it, it’s just a puzzle to be solved.
Various events have eaten into my time this week, and have prevented me doing things that are good for my mental health. I haven’t been physically active enough, and I have had little time to read. I like to read in bed before sleeping, but every night this week, I’ve been so tired I’ve barely read at all.
In terms of physical activity, you might remember from earlier blogs that I overcame a huge anxiety obstacle by re-joining a local gym. I was forced into it, kind of, by needing somewhere to shower while the bathroom at home was being renovated. I took the opportunity to exercise there, and even enjoyed it, despite my obsessive thoughts about hygiene and potential Covid-19 exposure! Then, yesterday, I got an email from the gym. They have introduced new Covid-19 restrictions, meaning you have to wear a mask in the building, except when exercising. Yes, you read that right. So, on entering and leaving the gym, using the changing rooms (and by implication the showers, which I don’t need to do any more, but still…), and moving between pieces of equipment, you have to wear a mask. But not while actually exercising. I think this is misguided. I am not an anti-masker – wearing masks is vital while the pandemic is ongoing. But repeatedly putting on and taking off a mask in a gym setting is problematic. Early in the pandemic, some guidance suggested that if you even touch a mask with your hands while you are wearing it, you should immediately swap it for a new one. I think that’s a bit extreme for a gym setting, but nevertheless, there is a problem with constant taking off and putting back on. It’s a step too far for my autistic sensibilities, so I am back out of the gym, and will have to find other ways of being physically active. Fortunately, I love walking in the park.
The Aut Files
I was listening to the audiobook, Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently by Steve Silberman, this week. There was a passage about a young autistic boy, identified as Robert. He was a high functioning, nerdy boy, extremely intelligent and precociously talented. Yet he was treated by psychiatrists as though his nerdy interests were in some way pathological. It’s a terrible indictment of how autistic people, time and again, have been treated so poorly, so unfairly, by people who are supposed to be helping.
This put me in mind of my own childhood. I was not diagnosed with autism in childhood – I had to wait until age 50 before I even suspected I might be autistic, and age 54 for an official diagnosis. Instead, when I was a child, my mother was told by a doctor that I was suffering from depression. This would have been in the early 1970’s, at a time when many people, including medical professionals, believed it was not possible for a child to be depressed.
My mother died a few years ago. I wish I had been diagnosed before she’d become ill and passed away, or at least that I had suspected the truth before then. I would have loved to have been able to ask her what she remembered about how I was different to other kids, what traits she saw in me. I know that I was extremely verbal and literate, reading fluently and voraciously before other children of my age, and even attempting to write short stories before school age. I remember other children, including the older children I knew, commenting on me using big words. I also remember at infant school and middle school being called The Professor. I was always interested in nerdy science fiction, and had an obsession with 1960’s and 1970’s Marvel comics. I would spend huge amounts of time alone, reading. Whilst I did have friends, I would often drift out of friendships, finding people had gone off me for reasons I didn’t understand. I also suffered a significant amount of bullying. My life at home was hugely problematic, although my mother was unfailingly loving, supportive, and protective of me. In summary, I was a nerdy, intelligent, small, quiet child, prone to loneliness and being bullied. But at some point that changed dramatically.
It happened in my teenage years. I had discovered girls, rebellious music, and rebellious fashion statements. I was a little young for Punk, but I threw myself into post-Punk. I found people were suddenly seeing me differently. I attracted a lot of interest from the opposite sex. I developed a huge, unhealthy capacity for alcohol. I learned how to look after myself against bullies. I became, over a few years, what a appeared to be a full-on Jack the Lad. Unfortunately, this was regularly interspersed with massive meltdowns, and spells of anxiety and depression, which I tried to mentally compartmentalise, and pretend were not happening. As a younger teenager, I skipped secondary school almost completely. I was all about the beer, the music, the girls. As I explained in my blog post about Masking, this was all an act; an attempt by me to fit into a society I didn’t really understand, by aping the behaviour of kids I thought were supposed to be cool.
What I can see looking back is that I suppressed my natural quiet, nerdy, introspective tendencies in an attempt to fit in. I was under pressure from society to conform, and to be part of something. I did not feel able, initially, to successfully be part of mainstream society, so I found a home in post-Punk music, and stumbled across an equally nerdy friend into the same thing, along with a love of science fiction and the paranormal. I found other friends into an equally nerdy pursuit; role-playing games, like Dungeons and Dragons. But this would only take me so far. I was also under pressure to conform to more mainstream society; get a job, a house, and so on. This assumed huge importance when I became a father at a young age, and swore to myself I would be a better parent that my own father had been. All through this, I was suppressing my natural self under pressure from social expectation.
Would my autism have been easier to deal with if I had been diagnosed as a child, and been supported through it, avoiding unnecessary social pressure? It’s a pointless question in some ways, because that could not have happened in my environment, in the decade in which I was born. But in theory the answer, I believe, is yes – the correct support can make autism easier for the autistic person. And that being the case, the opposite must also be true: a lack of support, the wrong pressures, the wrong type of parental influence and so on, can surely make autism more difficult to deal with.
In fact, in the early years of autism research, it was assumed by some that autism was entirely the result of inadequate parenting. The terms refrigerator parent, and commonly, refrigerator mom, were coined to describe aloof parents who raise their children by a cold method of forcing what they believe to be correct behaviours by rote, and with no emotional warmth. This unhelpful, damaging and inaccurate theory emerged in the 1950’s as a result of science apparently failing to find a physical cause of autism.
These days, it is largely accepted that autism has a genetic cause. But there are many real life stories of autistic people who have thrived with appropriate support, and who have faltered and declined with either inadequate or inappropriate support. The story of Bill, immortalised in the movie starring Mickey Rooney, illustrates clearly how nurturing support can have a huge impact on the wellbeing and social functionality of an autistic person.
While the causes of autism are genetic (nature), the effects of autism, and the ability of the autistic person to live a happy and fulfilling life, are clearly affected by environment and relationships, particularly parental relationships (nurture). I had a nurturing mother, but other aspects of my environment forced me to suppress, or mask, my autism, resulting in autistic burnout, and the serious flare-ups of depression and anxiety that have troubled me all through my life, and continue to do so. What this should show is that appropriate consideration for autistic people in society is vital if they are to thrive. By appropriate consideration, I do not just mean raising awareness among the general public, which is of course important, but also social policies in health, in education, and in workplaces. As I said above, autism is not an illness. It is not something to be cured. We, autistic people, are who we are. We are not going away. We require acceptance and consideration like any other human beings.
That’s all for this week. Until next time, be patient and considerate with each other, and with yourselves.