The fight for my culture, my Autistic identity

16 October 2017 – Attending Apac17 autism conference in Sydney recently was a ‘Jeanette holiday” for Australian autism author Jeanette Purkis because she got to meet up with friends she rarely sees, had incredible conversations, met new people and learned new things.

I AM HAPPY and proud to be me and all that means.

In my mind everyone has the right to feel comfortable and happy to be them, unless they are a serial killer or something of course.

HAPPY: Jeanette Purkis and Mr Kitty

Sadly being proud and happy to be ourselves is often incredibly hard or impossible to achieve. For those of us who belong to one or more ‘intersectional’ groups – groups of people who face disadvantage – self-respect, love and pride can be a very hard ask. I had to fight hard for my own autistic identity and often the enemy seemed to come from within.

When I discovered I was autistic, I actually refused to accept it. I stopped myself from entertaining the very idea I was autistic or different or disabled or anything else. My denial of my autism was a conscious thing, I could have changed at any time and deep down I knew I was autistic but consciously I saw it as validation of what the bullies told me all through school.

My limited understanding of autism combined with my self-hatred and shame meant there was no way I could accept it. I kept thinking back to a music concert I attended a few years prior to my diagnosis where these girls were about to bully me and then one of them suggested I had some kind of intellectual disability and they left me alone. It was bad enough being bullied but then receiving pity from the bullies? I felt like I was too strange to even be bullied! It was just too much, I already hated myself. I didn’t need a diagnosis which confirmed that!

How did I get from self-loathing to self-respect? I would love to tell a tale of a light bulb moment where I realised I was okay as me and then I found some autistic friends and life did some fairytale thing and everyone was happy and throw in a couple of rainbows and kittens playing and schmaltzy music. Of course life doesn’t really work like that and in fact it took me many years to value and respect myself. Even when I started to apply ‘Autism’ to myself, I did not do it very enthusiastically. It was like a guilty secret. I found it easier to discuss some genuinely shameful things I had done in the past than my diagnosis. I only told a select few – those who I thought wouldn’t bully me or ridicule me. Even when I spoke of my autism it was in hushed tones, as if I were afraid someone else might hear. I know, not much of an advocate!!

The change, like so many changes, was supported by a friend and mentor.  Somehow I ended up doing a course for autistic adults to enable us to do a public speaking job in schools. A woman was at that course who I was instantly drawn to. She said she was Donna (Williams) and told me about her many books. She was energetic and dynamic and evidently owned and valued her autistic identity. We became friends – and had the most amazing mentoring relationship. I learned my autistic identity in her house, in conversations with her and other autistic women she knew. Donna (who preferred Polly (Samuel) but was Donna when I knew her) supported me to write my story. When that was published I got thrown in the deep end of public speaking and media interviews and a public as well as personal identity as an autistic woman. It was very challenging but ultimately a great thing.

My transformation from ashamed to advocacy was not complete at that point but it looked a lot healthier. I have written of this many times before but Donna’s mentorship and friendship changed my life, and changed my ‘me’ on a fundamental level. I think that to support people to became proud of themselves and accept and understand their identity better is a precious gift. I will certainly always be grateful. As an aside, mentoring which produces more mentors and / or leaders is amazing.

A number of my friends who I don’t often see had dinner together tonight. I wore my red curly wig and my gold sequin shoes. My friends and I had one of those discussions where you feel like you might have changed the world a little by having it. We reflected that things are changing, mostly for the better, at these sorts of events and hopefully flowing on from that into support services and other important things. The world is different. My world is different. I don’t think these events happened within the same timeframe but I do know I am incredibly proud of my autistic identity and of the great friends I know. I actually have a culture where I belong and am so grateful to have this and be accepted. To have positive identity and connections with others in your culture is a great gift and a wonderful thing, I want to see a world where this is the norm.

Everyone needs their culture, their  ‘tribe’, their identity.

Jeanette Purkis has a Master’s degree in Fine Arts from RMIT University and works for the Australian Public Service as a policy adviser. Jeanette recently received an Excellence Award from the CEO of her department for promoting inclusion and advocating for disability. She is a frequent speaker at autism conferences and she facilitates a support group for women on the autism spectrum. She has received the ACT Volunteer of the Year award for her work in Autism advocacy and in particular in facilitating a women’s group for Autistic women in Canberra. Jeanette has a diagnosis of Asperger syndrome. She lives in Canberra, Australia.


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