My lived experience as a late-diagnosed autistic

Here is another extract from my talk for #NeurodiversityCelebrationWeek 2023, this one about my lived experience as a late-diagnosed #autistic woman.

I was a loner and tomboy at school. Oh, I doodled a lot in lessons, and daydreamed, and often gazed out of the window.

I had very intense interests, so there were some things I knew a lot about, for example I was interested in birds, the feathered variety, and revised the field guide to the birds in Britain and Europe and could identify any bird and tell you their habitat. I was obsessive about bands, I loved the band Extreme for a couple of years, I was in the fan club and followed them around and learned how to play their songs.

I had a couple of quirky friends, we were misfits and sometimes a target for bullies. I was into amateur dramatics where I found a lot of fellow weirdos. When I say weirdo, I mean that in a positive, affirming way. I don’t consider it to be an insult at all, because the best, most interesting people to me are the weirdos. #WeirdPrideDay

I struggled with homework and revision, even though I was academically gifted and bright, I just couldn’t get going on any of that, and I had to indulge my special interests when I was at home. Although I was in the top set, I was never going to be one of the highflyers achieving the top results.

I was bullied at school for being unfashionable and clever and “square”. I was too well-spoken, and didn’t have fashionable clothes – and that was in a school where there was no uniform, which was really unfortunate for me.

My only frame of reference for autism when I was a kid, was my brother. My brother is autistic with learning disabilities, so, to me, that is what autism looked like. He was in a special school. Yes, was the special one. I was the bright one, sinking under the weight of potential. My school reports said things like “Charlotte would do well, if she would only apply herself to her work and stop staring out of the window. She has such potential”.

Away at university, I got myself into all kinds of trouble. I constantly tried to prove that I was not in fact “square” and was actually fun, daring, rebellious, sexy. My validation-seeking behaviour left me vulnerable to abuse. I had problems with drink and drugs, and disordered eating. I really couldn’t cope with university life. The things that my intellectual peers took for granted, like using the university library and computer room, where to sit and how to integrate myself into a group of peers in seminars, anything logistical and social, I struggled with any of that, so, I spent most of my year at university hanging around with bikers, rockers and goths, with whom I found I could get on with effortlessly, and not actually doing any studying. The fact that I’d got through school only applying myself interested in the subjects that particularly interested me, taking things in but not actually studying, meant that I was hopelessly ill-equipped for university, so I ended up failing my first year. I stayed living away from my family, with a succession of unsuitable jobs, no degree, getting into debt, derailed.

But then I was got lucky because I landed on my feet. In 1999, back at home living with my mum and brother, I got a temping job in HR and realised that I was really interested in people, data and projects. I learned how to use Excel and HR systems, then found my niche in my first HR Systems Analyst role in 2002. There I could leverage my strengths, my analytical, methodical, meticulous approach to work, and my visual memory.

And yes, I still had communication differences and I struggled with meeting behaviours and didn’t know why. And at times I was easily overwhelmed, like if I was working on two conflicting projects at once with different priorities, I would quite often tip into burnout then which looked a lot like depression, so that’s what was diagnosed, every time. Knowing what I now know, I do believe this was autistic burnout.

I was finally diagnosed autistic in 2018, after my son was, and I realised in 2021 that I have ADHD as well. I’m in in the diagnostic pathway for that as well now.

I responded to this (the autism diagnosis) by turning into quite an evangelistic, happy, flappy neurodiversity advocate. I preached about the joys of being differently wired, and what we can bring to society and the workplace. I’ve become more measured and moderate in my views since then, having gone through some personal tragedies, but at that time it was like “Great, yay, I’m autistic. There’s a valid reason why I struggled with things that my intellectual peers took for granted, all these years, and now that I know that I can unlock understanding and self-compassion”. Yippee!