Part 1: Hello and Welcome

Hello, and welcome to The Autistic Writer.

I’m Darren, the writer in question. For those of you who have only just stumbled across me, Hi! I hope you stick around.

This is the first entry in my new blog.  I’m hoping it will be of interest to anyone who follows my writing, and also to anyone affected by or curious about autism.  Is this a peculiar mix – writing and autism? Maybe. But there are reasons I’ve gone for this particular mix.

So, why am I even writing this blog?  There’s a story behind that, and as I’m a storyteller, I’m going to tell it.  Sit back.  Here it is.

Back in 2014, I published my second novel, Abominations.  I was happy with the story, and optimistic about the success of the book. My first novel, Blood Brothers, had garnered some very passionate positive feedback from a number of readers.  Following that, I had written some short stories, novellettes, and plenty of poetry, and found myself having a small but loyal band of people following my work.  I thought Abominations, a meaty full-length novel, might be my breakthrough work.

Around the time of Abominations‘ release, there were various things going on in my life. My physical health was suffering badly.  Over the previous few years, from roughly 2006, gradually getting worse, I had become afflicted by recurring lung infections.  By 2014, it has got to the stage where I couldn’t exercise properly, I had no energy, I was weak and demotivated.  On two occasions, I had been rushed into hospital with blue flashing lights.  On the second of these occasions, I genuinely thought I was dying. I understand it took paramedics around an hour and a half to stabilise me before they moved me to hospital.  No one could get to the bottom of what was causing my illness, and I was accused by various people of exaggerating or even faking it.  This eroded my self-confidence significantly.  My weight ballooned.  I couldn’t walk uphill without losing my breath. As a result, my mental health deteriorated further.  This was particularly worrying because all my life since childhood, I had suffered with depression and anxiety. Now my mental health was taking a sharp, accelerating nose-dive.

Abominations, despite being picked up by a number of readers and getting enthusiastic feedback, turned out to not be the breakthrough I had hoped for.  It went out there, made a few ripples, then sank.  I was hugely disappointed.  Writing was something that I could do even when I couldn’t exercise or breathe very well. I felt it was my thing; something I was good at, that I could be successful at.  But it wasn’t happening. I was failing at the thing I was living for; that my ambitions were entirely pinned upon.

Soon after this, my mother became ill due to a series of devastating strokes.  She was nearing the end of her life, which I had expected to be tranquil and happy for her.  Instead, it was painful, and she was suffering horribly. I was working in a day job I detested, for a company that had become horrible, with bosses who did not believe my illness was real. I was depressed, anxious, and not properly engaging with life.

Our house was burgled, which affected my wife and I deeply. My mother died. I felt people in my workplace had completely lost respect for me because of my regular absences due to my health. I had dumped my friends, who I had drifted away from ideologically, and who I felt were betraying me.  I stopped socialising – but socialising had always been problematic for me; fraught with difficulties and confusion. I started to become what I can only describe as paranoid.  My day job had a fairly long drive to and from home, and I was finding I couldn’t mentally handle the anxiety of driving in such busy traffic at rush hour.  I was also becoming more depressed by the fact that I seemed to view the world differently than everyone else.  I felt isolated and excluded.  All this had led me to a point of deeper self-reflection than ever before.  I traced a pattern through my life; saw how I had always struggled to fit in, had failed to maintain relationships, had pushed friends away without realising how or why, and was constantly making social mistakes. I had sudden all-consuming interests, about which I would be vocally opinionated.  I had often been targeted as a ‘bit of a weirdo’, with odd obsessions, even though as a young man I had also been seen as a ‘Jack the lad’; although a volatile Jack the lad who people often had reservations about. But what became really apparent was that there was something fundamentally different about the way I approached and experienced that world, compared to everyone else I knew. I was different, and it was causing me problems.  I just didn’t know what that difference was. But I was struggling in all areas of my life, and my confidence in my writing had dropped through the floor. There was (always had been, and always will be) a link between my mental health and my writing that flowed in both directions, and the problem I was having with my writing was an indicator that something was terribly wrong with me. I was to find out that this thing that was wrong with me was not something new, but was something that had always been with me, and now as a result of the various pressures in my life sapping my willpower and confidence, had escaped its cage.

By 2016, the day job I was doing had become intolerable.  I wondered if the job was the cause of my mental health problems (I had been doing it for 28 years), but I thought it more likely that the toxic environment was actually just making me worse, rather than being the root cause. Either way, I couldn’t carry on.  So I resigned, and took a different job, starting on the lowest rung of the ladder.  Initially I did really well, although I was devastated when another bad lung infection came along.  I tried to work through it but eventually had to take time off to recover. And then, I had a huge stroke of luck…

In 2017, an article appeared on my social media feed about a common, widely prescribed medicine being used by millions of people around the world.  This drug was alleged to be causing long-term users profound problems.  One of those problems was debilitating respiratory infections.  I had been taking this medicine since 2001. Sixteen years.

I spoke to my GP about this article, but she was unaware of it.  So I waited for the upcoming appointment with my consultant at the chest clinic.  He confirmed he was aware of a potential problem with the drug.  I was rocked by this. Long story short; I stopped taking the drug. My consultant was wary of me doing this – he pointed out that I had been prescribed that medicine for a reason, and that reason would still have to be managed.  I didn’t care.  I stopped taking it.  That was February 2017.  At the time of writing, it is August 2020, and I have not had one single lung infection since stopping that drug.  My physical wellbeing improved dramatically and immediately, and suddenly I was so optimistic about my future that I kind of forgot my underlying mental health issues. The lung problems had been so oppressive in my life that the removal of the cause made everything suddenly seem possible.

I was kidding myself. I still suffered crippling anxiety in certain situations.  People who didn’t know me intimately would not have believed I was depressed or anxious, because over the years I had perfected a skill I now know is called masking; covering up my issues with an outward attempt at appearing normal.  The anxiety reached breaking point when I had done so well in my day job that I was offered a developmental move that I believed would lead to the promotion I had been aiming for.  What actually happened was that the change of office environment triggered an episode of anxiety so severe that it almost ended me. But again, I had a stroke of luck.  My employer used the occupational health route, and sent me to speak to a very perceptive doctor.  He talked me through my issues, and in a helpful plot twist it turned out he had a background in autism.  He told me that although he couldn’t give me an official diagnosis in his role as an occupational health GP, as far as he was concerned, I was 100% autistic, and this was almost certainly the cause of my other mental health issues.  He suggested maybe I should think about a full autism assessment.

My own GP agreed, and put me on the waiting list for an assessment.  I was told the list was a year long, but after fifteen months I still hadn’t been seen. During that wait, my mental health deteriorated so badly that I couldn’t do my job properly. I hardly ever exercised. I couldn’t even write. I tried to write; I had a whole novel planned, and had completed sixteen first draft chapters. But I couldn’t make myself continue. The combination of the commercial failure of Abominations and my autism-driven mental health problems had left me feeling I just wasn’t good enough; that I had been fooling myself. The feedback loop between my mental health and my writing went into a vicious spiral.  I became paranoid, felt like a faker, and even deleted all my old social media posts, feeling that nothing I had posted had really been me.

Eventually, I got a date for my autism assessment. It was actually two dates; two separate appointments, two very long sessions, and I found the whole process hugely traumatic.  But it resulted in a positive diagnosis. Hearing the words you are autistic was stunning, and a very emotional experience. Finally, I had a definitive answer to what had been driving my problems.

This diagnosis was not a magic wand to wave away all my troubles, though.  I was still deeply depressed and anxious.  For a while I had to go back on some medication to keep me stable. I still couldn’t write, and I publicly announced I was retiring as a writer. I had quite literally lost all direction and purpose in life.  If I couldn’t write, what was I even for?  My anxiety and my sense of social displacement intensified dramatically. Apparently this is not unknown in autistic people as they get older; learned coping mechanisms used when younger either stop working or are no longer appropriate, and difficulties re-emerge with a vengeance.  I found I couldn’t even attend a gym any more because the environment triggered my anxiety.  I was struggling badly.

I moved jobs again. I took a new day job in an environment that seems to work for me.  That’s not to say I never feel anxious; I do often, but at a level that, most of the time, I can cope with.  It helps that I am doing a job in which, at an admittedly modest level, I feel I am genuinely helping people.

Covid-19 hit, and so did lockdown.  And although aspects of the pandemic have triggered my anxiety, some elements of lockdown have brought a sense of calmness.  My mental health has had a space in which it has gradually improved.  My life has developed a comfortable routine.  I have started to accept myself as an autistic person, and have started trying to make sense of my life so far in the new context of knowing that I have always been autistic.

And then something very strange happened; suddenly and unexpectedly, I wanted to write again.  My mind kept going back to my unfinished novel; Aberrations (the story is related to my previous novel Abominations).  I opened the file back up.  Amazingly, I felt enthusiastic about it. 

Since my diagnosis, I have learned quite a bit about autism, and about myself.  I have also experienced first-hand the misconceptions many neuro-typical (non-autistic) people have around autism.  And sadly, I’ve experienced some low-level discrimination since I made my condition public. I am back on track with my novel, Aberrations.  It’s a good story, and has interesting characters.  I’m determined it will get finished, and it will be published.  One of the reasons behind this blog is to track and share my progress with the novel, as I see it as a route to consolidating improvements in my mental health.  Another reason is to be part of the movement that is getting information about autism out there.  It is still massively misunderstood by most people.  I want to do my bit, so this blog will talk about autism issues, as well talking to my readers about my writing.  I’ll update the blog weekly.  I hope you come back.

If any of the issues I have discussed have affected you, please know there is help out there. You can speak to your GP, and if your mental health is affected by work, speak to your employer; they have a duty of care.  Also, these links might help:

The Samaritans

Mind

National Autistic Society

Until next time, I wish you peace, happiness, and success.

Darren