Hard fought and won: What autistic pride means to me

Content warning: Bullying 

I was diagnosed as autistic in 1994 when I was 20 years old. I was not a person who found their Autistic tribe instantly or even quickly. I hated the diagnosis and could not associate it with me. Well, outwardly at least. Living as an undiagnosed autistic in a world where there was no appropriate diagnosis (Aspergers was only included in the DSM IV which was released in 1994 – the year I was diagnosed). This means i went through school feeling completely alone and isolated. In high school I was the constant target of every bully in the place. The bus ride to and from school was even worse with the only adult preoccupied with safely driving the bus and playing his country music cassettes. School for me was like the book Lord fo the Flies. It never occurred to me to not attend school so for six years I was bullied and invalidated every single day and often several times a day. 

One of the most frequent taunts was that I had an intellectual disability (well they didn’t use that language but you can imagine). While I was fascinated by autism and felt a connection with the one diagnosed autistic boy at my school, I never wanted to apply the autism diagnosis to myself. When I gained the diagnosis as a young adult I hated it for two reasons. The first was that I felt it was an excuse my parents could make for my poor behaviour at the time. But the main reason why I struggled with the ‘label’ was that I knew it was true and my understanding of it at the time was that it validated everything the bullies had said. I was filled with self-loathing and at the time, the autism diagnosis just confirmed my worst fears about myself. I set about being in deep denial for the next seven years. I would feel highly anxious to even hear the world ‘autism.’

The point at which I finally accepted my autism was when I was in first year at university. I had started to turn my life around and make some positive changes, one of which was enrolling in university. I discovered for the first time ever that people at university liked me for who I was, not because I was a member of a group. I had spent my teenage and early adult years desperately trying to fit in and belong. I thought that the best way to do this was to align myself with a group with set rules and just follow all the rules. I and been a fundamentalist Christian, a revolutionary socialist and a criminal, all with the intent to be accepted. It worked but nobody liked me for who I was, just because I agreed with their ‘rules’. At university I realised i wasn’t a member of any defined group but I had friends. Coupled with this I had an episode of mental illness which necessitated some soul-searching and reflection on my part. While doing this the thought of autism arose again and this time I thought ‘maybe this is me.’ 

You might think I suddenly embraced my autistic identity and wrote a book or something but I didn’t. My acceptance of my autism was gradual and incremental. For the first couple of years I would view it as something to be spoken about very cautiously, l as if telling people would result in them running me out of town! I would only tell people I really trusted. I wasn’t ashamed to be autistic, just scared of reprisals and bullying,

I went on for a few years not being particularly ‘out’ and then I met someone who changed everything – autistic author and advocate Polly Samuel / Donna Williams. I met Polly at a course and we instantly hit it off. Polly told me I should write my life story. She said it would be helpful for parents of autistic kids who get in trouble with the police and have addiction issues. She said this group was ostracised in parent circles. Almost immediately I made the connection that my book would be for my own parents so I wrote it. It was published and all of a sudden I had to be ‘out’ to everyone about my autism. I made the transition well and was soon speaking at events and giving media interviews about autism. It was quite challenging at first but I worked into it. I remember being terrified I would not be able to answer questions at presentations so set about learning more about autism beyond my own experience.

I still didn’t instantly ‘find my tribe’ though. That took a couple more years. It happened when I was at a conference for autistic women and girls. I was in a  room full of 100 autistic women other gender diverse autistic people and I knew I had come home. It was magic and I have never looked back. I found my Autistic Pride that day and it was a great realisation. 

These days I live and breathe advocacy and Autistic pride. My passionate interest is autism advocacy and I spend a lot of time talking to people about autism. Autistic pride is imbued my every interaction. Sometimes people contact me and are almost apologetic that they are having difficulty embracing their autism. I have no judgement and know that the road to pride is sometimes hard fought and won. Sometimes it is a long journey to Autistic pride but it is a very worthwhile journey to take. Every day of being proud of who I am has been a gift. After the start to life I had where I was invalidated and hated and treated like I had no right to exist, to be able to say ‘I am Autistic and Proud’ is a pretty amazing thing. We live in a world which often makes it hard to feel proud to be Autistic. Pride can make such a difference and mean the difference between masking and trying to hide who we are and accepting, loving and valuing ourselves. Your sense of pride helps others too. Get your pride on I say. It makes life better and Autistic people deserve to be proud of who we are. 

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