I looked at the world and the world looked at me for 50 years. Then I was diagnosed with Asperger’s. Getting the diagnosis had a profound effect. Over the following weeks, a thousand shards seemed to rush together to form a single mirror. I could see myself at last. There were no distortions, no 'missing pieces'. So I could stop searching for them.
If you’ve ever beaten yourself up about your 'failings' you might begin to comprehend the sense of relief. After a lifetime seeking that elusive ease that other people seem born with, I suddenly realised that they were born with it, and I was not.
I watch people, in an attempt to work out how they get from being strangers to being close. I remember seeing two people sitting on a bus. He glanced at her, then reached up and pushed a strand of hair off her face. She looked at him and smiled. How does that happen? Or the couple walking down a street, whose hands move at the same time, to hold the other’s. It seems so instinctive. I can’t work it out.
I’m told that when younger, my inability to read signals left a small succession of men feeling rebuffed and vaguely puzzled. I’m flattered and bemused. I hope they were good looking. Some years ago I was in a relationship. He had to practically club me over the head and drag me into the cave before I realised he was interested. To anyone else, that might have been a warning. But people with autism tend to trust what we are told because we don’t speak body language. I spent our first year together discovering how manipulative he was and the next three looking for an exit strategy.
There is a vast gulf between being alone sometimes and being alone in the bubble of aloneness experienced by many people with autism. I go out every day, to be among people, but do not try to engage with them. I sit with my book or crossword, conscious that I am being part of society. If someone took a photo of me in the coffee bar, you wouldn’t spot the Aspie. And I might not be the only one.
Social isolation is not just about having mates to socialise with. It’s true that if I go to the cinema I go alone. I eat alone. I go on holiday alone and when I get home, everything is exactly how I left it. But it is more profound than that. If I am ill, no-one will bring soup or take me to the hospital. At the end of a working day, there is no-one to talk to about the stresses or the highs. If I am anxious, I stay anxious. I have no friends I can call to cheer me up. I know nobody with a car. If I want to buy something bulky, I have to pay to have it delivered. Join a club? Been there, done that, learned new skills, went home.
I know all the things I ought to do and how to access information. I don’t require kindly advice – I simply can’t do it because I work full time and just getting through the day is too tiring.
I have a parent and an Aspie sister and we form a good support group. We have other siblings, without Asperger’s. They are happy with their families, however I wish they would make some attempt to understand autism. Not for myself, but because they have children and their children are beginning to have children.
My Aspie sister and I have worked extremely hard to understand each other. People with autism are not all the same – she responds to stress by going to sleep, I do a great line in meltdowns. She cannot work because she always gets bullied, but is better socially than I am. We respect and love each other and we each provide the support the other needs. Our parent is relieved we have been diagnosed (both in middle age) as knowing the cause of problems is pretty basic to tackling them.
Which brings me neatly back to diagnosis. Six months after mine, I looked at my bookshelves and realised that I had hundreds of books because I thought I should own them. So I hauled bag after bag to the charity shop until they were begging me to stop. I began to allow myself the indulgence of the repetitive habits that relieve stress. I plan my working life better, although there is still room for improvement.
I have read books by other Aspies and trawled the internet forums. There is a lot of emphasis on young people with autism. I was never a young person with autism, as I had no idea I had it. I was a young person with problems. I am now a middle aged woman learning for the first time to recognise my problems as Aspie problems and look for interventions. I have the problems, but there don’t seem to be any interventions available to people of my age.
So I review my life alone. No change there. There are problems I haven’t been able to rectify, but I know how to be kind to myself. When I get home, electric lights go off and I light candles. I burn oils because they calm me. I am learning how to slow down the chatter that runs through my head and I am looking for the key to a full night of sleep. I might never be at ease with you, but I am more at ease with myself.
I have plans that are based on who I am, rather than who I think I ought to be. I spent my first half century trying to fit in and now I have stopped. If anyone questions my oddness, I tell them it’s because I’m odd.
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