I was one of the first adults diagnosed with what was then called Asperger Syndrome in Australia. It was 1994, I was 20 years old and a prisoner. The diagnostician visited me three times to do the assessment. She said that I satisfied all the DSM IV criteria for Asperger Syndrome. I disagreed. There were reasons for this. My understanding of autism was that it validated all the awful things that school bullies had said to me. As my parents had sought the diagnosis – and arranged for the clinician to assess me – I felt that the diagnosis was my parents making excuses for my poor behaviour. I understood it to be a diagnosis of ‘nerd’ and I wasn’t a nerd. I was a big scary criminal (well, I thought I was but hindsight tells me I was masking in order to survive.) Deep down I knew I was autistic but I really struggled with it.
It was seven years after my diagnosis that I accepted I was autistic. However I didn’t exactly embrace my identity. I was happier telling people I had been in prison than I was saying I was Autistic. I very grudgingly accepted my ‘label’ but I didn’t like it one bit.
I gradually made peace with my autism diagnosis in 2004 when I met author and advocate the late Polly Samuel. Polly became my friend and mentor. She encouraged me to embrace my identity and also to write my life story. I did both of these things and it was amazing – and the book was published, thrusting me into the world of autism advocacy, whether I wanted it or not!
A couple of years after meeting Polly I truly accepted and embraced my autistic identity and never looked back. I attended and spoke at a conference in Brisbane. The theme was autistic women and girls. (This was long before I embraced my non-binary identity). The first day of the conference was open to everyone but the second was just for autistic women and girls. I finally realised I had come home. My autistic identity became very strong and I was genuinely proud to be autistic. I still am.
That experience of coming home was amazing and I have not looked back since. While many autistic people receive a diagnosis and immediately embrace their autistic identity for many others – including me – that acceptance can take longer. It can be hard to process and many people internalise ableism and this can fuel denial. I know that my experience of coming home to my identity – and autistic ‘family’ – was a liberation and an experience I would wish for any autistic person.
[And I apologise if there are typos – I have a cat sitting on me. He thinks he is helping but he really isn’t!!]