A short history…

It’s hard to remember that this day will never come again. That the time is now and the place is here and that there are no second chances at a single moment.

Jeanette Winterson

Here goes…

I’ve always felt like an alien on this planet.

As a child in the 1970s, I used to think, “Any minute now, someone is going to let me in on what’s really going on here. Until then, I have to play along. If I just keep pretending, if I just keep smiling, I’ll be given the keys to the kingdom and my life can really start.”

I learned to mimic and tell stories, to make people laugh, to act and to put on a good face. I just had to be patient, I told myself. Eventually I would pass the secret test, and someone – perhaps a parent, perhaps a teacher, perhaps even a benevolent committee of some kind – would take me into a quiet room, sit me down, and congratulate me. They’d tell me the reasons why nothing made sense, everyone was pretending, and everything was just a bit, well, weird.

Weird summed up my days. I couldn’t keep track of physical objects and was forever losing and breaking things, including my own body. I found eating to be uncomfortable and pleasureless, and couldn’t understand why we performed this bodily function in groups. I didn’t like to be hugged or touched, preferring instead to soothe my senses with repetitive fiddling that drove others mad (particularly the few people whose arms or hands I did like to stroke for comfort). I laughed at things no-one else found funny, and missed things that others did. I often zoned out without knowing why, and forgot huge expanses of the day, yet at night I couldn’t settle to sleep. I was probably hungry and exhausted most of the time, but couldn’t tell. I still didn’t know what was normal, so there was nothing to compare it with. I still hadn’t been told.

Teenage years arrived, and I was still awaiting the chat. By then I’d had some wonderful, happy adventures in this peculiar and miraculous world. Academically bright, outspoken, and creative, I bounced through life doing reasonably well on the surface. But I never quite fitted in anywhere. Whatever the class, club, or clique, I could give an approximation of being a member, but would often find myself inexplicably excluded before too long. I loved people, but they confused me. I would crave time alone so that I could weep, rock, and shake without attracting attention. I didn’t know how to “hang out” with others, or obey the unwritten rules of group membership and loyalty. I started to become a loner. I stopped acting and singing. All of a sudden I didn’t want anyone’s eyes on me. I made myself small to pass under radars; without anyone realising I was getting left behind.

By my early 20’s I was beginning to think that the “chat” was never coming. Still, I persisted in all the right things; I graduated, and went on to hold down demanding work in the emergency services. I married and became a mother. It all seemed like a textbook, and that’s exactly what I was doing – following a narrative and waiting for the chapter where it all made sense. The disconnect between the two was painful; I was regularly suicidal and self-harming. I covered it well with masking because I felt so ashamed of my inability to cope, but I was tired often. I’d regularly collapse knowing something was wrong, but not what.

Once I entered my 30’s, I realised I had to go out and find this “chat” for myself. Action was needed if I was to continue to function at work and as a parent – and once I became a mum, I couldn’t hide my not-coping any longer. Mental health services did their best, but never really settled on a diagnosis for me, and whatever it was ran much deeper than anti-depressants or therapy could touch. Time after time I’d be signed off a course of therapy or drugs with the needle having barely moved; therapists would say, “I’m sorry we didn’t make much difference for you.” I’d always learn something, but I couldn’t really execute it; like watching a gymnast somersaulting, I could see how it worked, but couldn’t somersault my own self.

Eventually, I gave up involving other people at all, apart from a small tribe of beloved weirdos who loved me fiercely. The “chat” wasn’t coming, I decided. No-one, anywhere, knew what was going on. I resigned myself to being lost, relying on my own wonky coping strategies to get through each day.

I’d always been aware that autism existed. But it wasn’t until I first started working closely with autistic people in my late 30’s (first as a mental health worker, and then as a support service designer) that I realised it might be a factor for me. I related much more to autistic people than to others. They made sense. I liked the way they approached things, their unmasked socialising, their sense of humour.

Both my children’s schools were noticing differences in them, too. In the 1980’s, so long as your marks were high and you weren’t misbehaving, no-one minded if you spent each lunchbreak locked in the toilet, or sitting on a wall talking to yourself. In the 1990’s, I could be a coolly aloof student, or a boffin-like employee. In the 21st century, things got noticed. Or maybe I was just learning more. Maybe… maybe someone did have a clue, after all.

And so it was that I started the long journey towards the realisation that I was autistic. In time, I’ll share the things that helped me to acknowledge it, how I was assessed, and what difference it has made.

For now, you might be wondering whether I’ve still given up all hope of “the chat” – the one where someone would give me the magic keys I needed to make sense of the world. So, yes. I have given up my 40 year hope that someone would explain it all to me. I’ve realised something rather wonderful instead…

We all co-create the reality we find ourselves in from one moment to the next, based on our experience, learning, and best-guesses. I used to think that was terrifying, but now I find it exciting. I’m ready to have agency in the second half of my life, rather than be tossed about on the waves.

People still want “the chat,” though. And that’s exactly why I’m writing – to take part in the conversation. You can just listen for now – I understand that feels more comfortable at first. So I don’t mind laying my experiences out for you. Hopefully you’ll start your very own chat – with yourself and the people you choose to involve – before too long.

 

8 thoughts on “A short history…

  1. This is totally me and my life. Every part until I had a child at 44 who is also Autistic who gave me a ense of worth. Years of therapies never changing me. Waiting and waiting for someone to tell me why. It all slotted in later in life, even though nothing has changed in me. Reading this is so good. I have felt so alone all my life but so overwhelmed when I tried to join in. Thank you.

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    1. Wow Tanja, I couldn’t have wished for a more affirming first comment. I’m sorry that you waited for so long and happy to hear that things are “slotting in” now – that’s nicely put. Thank you! Em

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  2. Beautifully said Em.
    In many ways this is like reading my own diary. I believed I was a robot, sent to work out something but I’d forgotten exactly what (I read a lot of Doctor Who as a kid!). I was introverted and quiet from the start. Alas my parents were extremely unpleasant and that obfuscated all the ‘born’ oddity under some ‘gifted’ scars.
    I don’t think I’m autistic – rather that human connection, especially love and emotional intimacy, are learned behaviours. I never saw them so didn’t learn them. Now I manage using the tricks of imitation, but it’s not satisfying – needs are not really met, just elided.
    For a short while I found actual love. It was during those years that I came to see things in this way: The ‘Chat’ you waited for, the question I thought I’d forgotten… are really an ‘itch’ – a liminal understanding of the essential aloneness we all live with, a sense of our distance. People are their own music, and most often they are loud and crashing and do not harmonise with us at all. But there are a handful of people out there who are ‘like us’ – their music enfolds with our own and two voices become a melody. In genuine love – a dance of souls not a codependency of fear – one is able to connect so entirely with another that the aloneness is gone, or so small as to no longer figure.
    Your lifeboat will not be lost in a sea of voices. Among a tiresome array of people only bleating for want of being heard, you write as someone sharing in a spirit of unattached honesty. It’s refreshing and there will never be enough voices doing that in the world. So Welcome 🙂

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  3. Emma, this is wonderful! Congratulations! I will look forward to much more! The name is still running around in my head, I’m trying to come to terms with the fragility of what the paper lifeboat represents and how it’s helping save us, but can only do so much without sinking. Loving the Friendly February calendar! I’ve already completed the first task by sending this message. Thank you!

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  4. I read your words and they made perfect sense and they are a ray of hope for a moment – I know that my brain will soon let them go until a big nudge or an embarrassing moment brings them back to the fore and I metaphorically berate myself for having lost them on my journey.
    Like you with ‘support’
    ‘I’d always learn something, but I couldn’t really execute it; like watching a gymnast somersaulting, I could see how it worked, but couldn’t somersault my own self.’
    My day to day life is the norm of confusion, interruptions (from myself), wondering what I was doing, what I should be doing, ‘haven’t I done this before and if so how?’, forgetting that I have created a new list of what I need to be doing and starting another one two hours later and then finding the original one a few weeks down the line!
    I say Thank you for being brave, Thank you for sharing, and Thank you for being a ‘lifeboat’.

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