I was diagnosed as autistic in 1994. I was twenty. However. I realised I was different to others from a much earlier age. It has taken me a long time to understand who I am and accept and respect myself. We live in a world where difference is often not understood or respected. This is especially true for the kinds of differences that autistic and other neurodivergent people experience.
I think the moment that stuck in my mind of realising my ‘difference’ from others was when I went to a birthday party for a school friend. She was turning 12 and I was 11. I wore a green check skirt and lemon yellow button up shirt to the party. I was so uncomfortable to be in a room of strangers. I didn’t know how to break into a conversation and the only person I knew was my friend. One of the others asked if I was wearing my school uniform. I was so embarrassed and I longed to be able to be like other people and not be socially anxious and to wear fashion that was similar to what my peers were wearing. That was the first time it hit home that I was not the usual sort of human. I firmly believed I was the only person like me in the world. It was horrible.
I spent the next twenty or so years desperate to fit in and be like other people. I firmly believed that I was inferior to the rest of the people in the world and that I needed to change in order to be more like them. I think this was largely due to the bullying I experienced throughout school.
Bullies at school relentlessly pursued me. I was hated in every school I attended. I was ‘weird’ and a ‘nerd’. My apparently ambiguous gender was another reason for bullying. The messaging was consistent so I figured the bullies must be correct. This led to post traumatic stress and a strong wish to conform to what young teenagers were apparently supposed to conform to. I kept everything emotional firmly suppressed. I never had a meltdown from the age of about 10. While a meltdown may be viewed as a negative thing, not having one when you need that release valve – such as when you are terrified to go to school every day due to being abused and harassed pretty much constantly…well in that situation an occasional meltdown might in fact be helpful! Suppressing emotions is not generally a good idea and I did it for many years.
Even though I was diagnosed as autistic at the age of 20, I never saw it as a good thing. Quite the opposite in fact – I struggled to accept my autism mostly because I thought it validated what the bullies had told me. I thought autism was a diagnosis of ‘weird’ or ‘nerd’ so I kept as far away from it as possible. I was ashamed to be autistic and thought it was a dreadful thing that somehow needed ‘fixing.’
My feeling was always that my autism, my ‘difference,’ was a negative thing. Even when I accepted the diagnosis it was very tentative and reluctant. I didn’t really WANT to be autistic. I did some research and signed up with an autism employment service but I didn’t want to be in that group and saw the diagnosis as disabling and something to be ashamed of. Rather than being proud as an autistic person I was apologetic to be so ‘weird’.
It wasn’t until my early thirties that I learned the value of being an out loud and proud autistic person. I met other autistic people, including my mentor, the late, great Polly Samuel. Polly taught me all about autistic identity and pride and I never looked back. I learned that different is not less and now I share that message around the world. Polly would have meetings at her house where autistic people would visit. Sometimes we watched movies and sometimes we talked abut writing and books. Polly was – at that time – a nine times published author. She was also an accomplished artist and we would talk about all things autism and identity, stim to our hearts’ content and paint together. I became Polly’s protege. She encouraged me to write my life story which initially I wasn’t keen to do but in the end Polly convinced me. I wrote the book with Polly’s support. When it was drafted and edited (a process which took a total of six weeks) we sent it to Polly’s publisher. They took three weeks to decide to publish it and my advocacy career – and the life I have now – was born. The book thrust me into the autism advocacy world. Suddenly I was someone people came to for advice on autism. It was amazing – and utterly terrifying! Over the years I have learned a lot more about autism and neurodiversity more broadly.
And yes, I do experience the world a bit differently to others. My social communication is very direct. I tell it like it is and that is OK. I love to stim and often find myself clapping my hands or flapping when I am either anxious or excited. I have immense focus and can work for long periods without a break – or even realising that a break is a possibility. I am a huge fan of words and writing. I have prodigious skills in art, public speaking, writing and strangely enough, cooking! I am thoughtful and kind and I have respect for people from diverse backgrounds. I have that amazing – and quite difficult – autistic quality of hyper-empathy. I have some sensory challenges such as toilet smells, some foods and bright lights. I also have some sensory joys – glitter, foil and shiny things generally. I have a very idiosyncratic – and extremely cool, even if I say so myself – sense of style. Like many autistic people I am gender divergent – in my case non-binary / agender and like many autistic people I have a divergent sexuality too. As an autistic person I am strongly connected to animals and nature and I am also very logical.
I would not get rid of my autism even if I could. It is what makes me different and what makes me wonderful. It has taken me many years to get to such a strong place of respect for my difference and embracing my autism. It is true that for some of us being ‘different’ can be traumatic. Sadly a lot of autistic people are bullied and abused by people who do not respect or understand difference. This is not ever OK. Difference and diversity are beautiful and should be encouraged and supported.
Yes, I firmly endorse the statement ‘different not less’.