Gift: A Son's Story (excerpt)
In May 2015, at the age of 56 - and after a lifetime of inexplicable challenges - I was finally diagnosed with Autistic Spectrum Disorder (Asperger's Syndrome). The diagnosis changed my life, enabling me to make sense of it at long last. My mother came with me to the diagnostic assessment. Her testimony about my childhood helped me to get that vital diagnosis.
In September 2016, mum became ill with what was to be her final illness. She was no longer able to live alone. Rather than see her give up her beloved home and go into care, I gave up my own care-work job and moved in with her to nurse her through those final months. It was both the most difficult and the most important job I've ever done. But it was something I had to do. She not only helped me to make sense of my life - she gave me my life in the first place. She was always there for me when no one else was. For me, she was the most important human being who ever existed.
After she passed away, I spent three months writing a book about that precious time we spent together. It was also a life history: mum's, mine, my family's. It hasn't been published and it probably never will be. But that's not important. I wrote it to help me to get through those months and come to terms with it all.
This is a short excerpt...
Mum had a couple of medical appointments in early December. One was at the local minor injuries unit, where she was seeing her rheumatologist. Russell [my older brother] came and took her to that. They were likely to be gone about ninety minutes, so I used the time - the first real stretch of respite time I'd had - to relax a bit. I went down the town and had a mooch around the shops - all decked up now for the forthcoming festivities. The usual muzak was playing everywhere. In the stationers, I bought some boxes of cards. Finally, I picked up a can of beer at an offy in the High Street, then I cut through to the seafront for a walk.
It was a blowy day, and the tide was high and choppy. The sky was slate-grey - the horizon line barely visible. At a convenient point along the sea wall, I dropped down onto the beach. I seemed to be the only one around, which is what I'd hoped for. An empty space, with just me and the elements. A place to be alone with my thoughts.
I sat on the pebbles in the shelter of a groyne and popped the tab on the can. The buzz from the first mouthful hit me straight away. It felt as though all the muscles surrounding my skull had suddenly been released from the strain they'd been under and had gone slack. The knot in my stomach loosened, too - the anxiety that had always been there, to a greater or lesser degree, for much of my life. I'd learned to live with it and almost accept it as my default condition. For most of my adult life, that's what I'd been: an anxious individual. In my thirties, depression had been added to that. Since then, until my Asperger's diagnosis, 'anxiety' and 'depression' were all I had to go on. I didn't really know why I had them, or where they came from. My therapist naturally rooted a lot of it in childhood experiences - the disruptions and disturbances caused by dad's behaviour, changing schools at a crucial time, the bullying, the sense of alienation I had from my peers.
"Your earlier life was like a huge earthquake happening at sea, where no one could see it - not even you," she'd told me. "The after-effect of that was the tide receding further and further out, until you couldn't see the sea at all - just barren sands. And then suddenly, as you hit your thirties, it all comes washing back in a huge tsunami wave and overwhelms you."
It was an analogy that made a lot of sense to me. But it still didn't answer all the questions about my feeling 'different' throughout my life: like, in my favourite way of putting it, a cat in a world of dogs. The Asperger's diagnosis had given me those answers. It had been a positive thing for me in so many ways in that respect. I was 'out' about it, too - telling everyone. And it genuinely felt like that, as well: like coming out of the closet. Finally being able to disclose something to the world and say This is who I am. More importantly, I could disclose it to myself, too. I hadn't been hiding anything. Rather, it had been hiding from me and masquerading as something else all along. But I was no longer that anxious, depressive loner that seemed to be my life-designation. I wasn't sick, or disabled, or disordered. I was differently-wired. Neurodiverse, not neurotypical. I was a cat. Not a poor excuse for a dog.
There were, though, downsides. I used to reflect on how my life might have turned out had I been diagnosed as a child. All the pointers were there, in my school reports and behaviour patterns. I was 'shy', 'disruptive', 'unfriendly', 'incapable', 'bright, but unfocused'; I couldn't 'fit in with the rest of the class.' Maybe, with the right support at the time, I might have done better. When I finally got my degree at 31, I sent copies of it to my old schools. It probably didn't mean anything to anyone by then, but it felt like a vindication. And a middle-finger gesture to them, too. I hadn't failed them. They'd failed me.
The other downside was the reaction I often seemed to get from other people. If it had been some kind of physical condition - something that could be seen or otherwise made sense of, like psoriasis or diabetes - it would have been different. I could have been given treatments. People would have acknowledged it properly and made allowances. People would have empathised with my pain or difficulties, because those things were more known about and comprehended. But this was something different, and something that - despite the raised profile and general awareness of autism in the news, in books and films, on TV - still wasn't properly understood. And people are often either, at best, wary of or, at worst, scared of things that they don't understand. They become suspicious, perhaps. They even back away and create more distance.
I'd sensed this a little with Russell. I'd tried explaining it all to him - as I had, over the years, with my depressions. His way of comprehending it, though - as I'd discovered since with many other people - was to try to 'normalise' it in terms of general behaviour. 'I was bullied at school, too,' he'd said to me. 'I've had depressions.' Maybe so. But I didn't think he appreciated the scale of it all. I was bullied at school virtually all the way through it - every day. I lived in fear of school, and especially so in Devon. Russell, on the other hand, was in the school choir and rowing club. He still even kept in contact with friends he made during those days, over fifty years ago. Depressions he may have had, too - but not debilitating ones. Not suicidal ones. I was pretty sure he'd never ended up in a hospital Emergency Room being pumped out. All of these things were in my diagnostic report, which he'd seen but never mentioned. Like the condition itself, the reactions and attitudes were just things I'd learned to live with. The familiar comments: 'That's not autism. Everyone gets anxious in social situations,' or 'But you don't look autistic,' or 'You can't have Asperger's. You work in care,' or 'I'm pulling your leg. Can't you take a joke?' - I'd heard them all, time and time again. They always rankled. But I let them go over my head. There was little other choice. In the end, I figured that if people simply don't want to know, then persisting in trying to explain to them was a waste of time and energy.
I knew that, for many autistic people, the condition was severely disabling and debilitating. In that sense, I should feel lucky (as I'd also been told) that I was relatively 'normal'. I could live independently, hold down a job, drive a car, go shopping - do things that most other people could. I had my health, too. So far, so good. But I had to challenge the idea of 'luck' whenever it was put to me. Most people wouldn't regard it as 'lucky' to have had difficulties since childhood with social interaction and communication. To miss social cues and gestures. To miss body language - including flirtation. To not have friends. To be bound by routines, and struggle with change. To feel out of step with society. And to recognise the limitations those things have imposed on your life. I had problems with long-term concentration. I found it difficult being in crowds, and I hated noise. I had attention lapses when I'd do things that, to an onlooker, could be seen as thoughtless, clumsy or stupid. So, it wasn't plain sailing by any means.
On the other hand, because I was used to these things, I'd learned to accept them. And I didn't worry that I didn't have people ringing me up all the time, inviting me to parties or nights out, demanding my attention. I'd never wanted that kind of life. Within those limits, then, I was happy. I think, too, that the life I'd lived had shaped me for the role I now had in caring for mum. Living alone and cheaply, out of preference, meant that I didn't have huge responsibilities that I couldn't easily give up. I didn't have a relationship to maintain, or children to worry about. I didn't have an active and demanding social life. In those senses, I could give all of my focus and attention to the role. I didn't have to surrender things in order to take it up. I was there, at the right place at the right time: committed, trained and ready. In that way, I did feel lucky. I was glad to be who I was, too - something that I'd struggled with for far too many years. What I was doing wasn't a sacrifice. Neither was it something I wanted praise for. It was a privilege.
I finished the can and looked at my watch. They would be back soon. I put the empty in my rucksack, ready for the recycling bin, then went back up the steps to the promenade. The sea continued its relentless rush over the pebbles. Seagulls wheeled and moaned overhead, like crumpled bits of paper blown up by the wind. My face was stinging. But I felt relaxed and refreshed.
I'd only been back about five minutes when they arrived. Mum hobbled indoors on her walking stick, beaming.
"There," she said. "Let's put the kettle on."
Russell didn't stop as he had to get to a meeting with a client. Mum made us a cup of tea and got herself settled down.
"Everything went fine," she said. "All good. And it was so nice just to get out and away from here for a while."
I knew what she meant, but for some reason I took a bit of a sting from it.
"I wish I could take you out more. Maybe, when we have some better days, I could rent a car and we could go some places."
"That would be nice," she said. "Let's get Christmas out of the way first, though. The spring will be nice."
"Yes," I agreed. And looking at how well and refreshed she seemed, I really started to think she would make it.
Rest in peace, mum. I love you and miss you, always. xxx