The ‘self’ in self-advocate

I am somebody who falls broadly into the category of Autistic self-advocate. I have a lived experience of Autism and I promote the rights, strengths, needs, individuality, value and [power of both myself and others with Autism. Being a self-advocate was not soemthign I consciously chose – rather it happened incrementally over a number of years.

I was thinking about the idea of a self-advocate this afternoon. I was watching a TV program in which one of the characters was joking about a boy with Asperger’s. The intimation was the one so frequently aired on television and moves – people with Autism are nerds, socially inept, somehow less than human etc etc etc.

This got me to thinking about myself in relation to these attributes. When I was at school, I was constantly attacked by bullies for being ‘weird, nerdy, a geek, ‘unco’, stupid, retarded’ and many other cruel insults. After thirteen years of listening to these things, I believed them. I hated myself. Despite the fact that I have a high IQ, a high EQ and others measures of general intelligence, it only started to occur to me that I was not stupid when I was 29 and a psychiatrist suggested that I was very intelligent. I still have issues with liking and valuing myself and I suspect I am far from alone in this regard.

People on the Autism spectrum are  often insulted by bullies, excluded from activities, feel isolated and lonely, are patronised by people who should be assisting and empowering them and  given low expectations of their potential by seemingly everyone in their life.

When I was first diagnosed with Autism spectrum disorder, I could not entertain the concept of belonging to the Autism world. To me, the diagnosis seemed a confirmation of all the negative things I had been told throughout my life. It took me seven years to be able to even entertain the thought that I had Autism. Shortly after that I wrote an autobiography which dealt with my experience of living with undiagnosed Autism. I was asked to speak at events and was almost unwillingly thrust into the role of a self-advocate.

That was ten years ago. Now I am comfortable to talk about Autism to all sorts of people. I disclose at work and instead of hating myself due to my ‘difference’ I embrace my uniqueness. When a self-advocate – or any Autistic person – embraces their own uniqueness, their own Autistic self, they are sending a message to all of those people who doubt us: the bullies, the people who believe us incapable of doing anything worthwhile, even the writers from TV shows that see us as a nerdy butt of jokes. For me, the day when I proudly stated that I am an Autistic adult who does good things and that I like myself, Autism and all, I started to accept and value myself. Everyone has the right to that sense of value and self-acceptance.

Remember, we are amazing. You are amazing.

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Me…advocating (at TEDx Canberra 2013)

‘Be careful out there…’

Trigger warning – reference to sexual violence

I recently found out that a friend had been sexually assaulted by a pervy creep.

When I first heard this news I was very angry. I considered  a scenario where I would find the creep and discover whether a man can actually die from being kicked in the nuts.  Knowing that these sorts of things are rather ugly too and that one form of violence is not solved by another, I abandoned my angry images and settled instead on being triggered and miserable for a fair while. I have good reason to feel triggered by such things: I had a similar experience 24 years ago as a naive and trusting 16 year old Aspergirl.

As I move through life and meet more and more people on the Autism spectrum, I discover that experiencing sexual – and other forms of violence is sadly very common. Looking at my own experience, I had a very low self esteem, I didn’t understand the non-verbal cues so by the time I felt threatened it was too late, and I actually didn’t know what my rights were in relation to my body. I’d heard about rape but it was always described in terms of a stranger or criminal and this man was a hippie and I’d been talking to him all evening. I had also grown up in a very strict church and was told that women weren’t supposed to enjoy sex, so I figured that what was happening was probably natural.

It’s quite easy to spot why young people on the Autism spectrum are vulnerable to violence, and another still to find a solution. I suppose what we need to do is start the conversation with our daughters and sons, nieces and nephews, grandchildren and friends. We have to make sure that they have self-protection skills – not just an awareness of ‘stranger danger’ as often an abuser is known to the child. We need to model confidence and assertiveness and teach young people how and when to say ‘no’.  Many good people are working to address issues around violence and young people on the spectrum. In my case, I would hope that in some way I can help people be safe and not have to experience what I know to be an invalidating and terrifying occurrence which can leave lifelong scars.

I will add that self-protection allows young people to be prepared and confident to address potential violence but the responsibility for the abuse always rests with the perpetrator. As some wise person said ‘How can you stop rape? Don’t rape people’.

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Welcome!

Hi All,

Welcome to my new blog. I will be posting on all things Autism and mental health.

Some of you might already know this, but I am an author, artist, public servant and mummy to a little black kitty. I have a diagnosis of Asperger Syndrome and atypical schizophrenia (or schizoaffective disorder, depending on which psychiatrist you ask!)

I have been active in the world of Autism and mental illness advocacy for over ten years. I have written an autobiography and an activity book on employment to help teens on the Autism spectrum prepare for work. I’ve contributed to a few other things too…

I have a difficult life but a very good life. My mottos are ‘you are the CEO of your own life’ and ‘change the world, just a little, every day.’

Here’s a link to my books on Amazon.com:

http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Daps&field-keywords=Jeanette%20Purkis&sprefix=Jeanette+Purkis%2Caps&rh=i%3Aaps%2Ck%3AJeanette%20Purkis&oqid=1410662957

I will be blogging about a wide range of topics, which will  include:

– Employment

– Sexuality

– Self-protection and addressing abuse

– Issues that impact on women with Autism

– Resilience

– Relationships with family and friends

– Identity, and

– The life and times of Mr Kitty

I hope you enjoy reading my thoughts. I would also like to invite some influential people in the Autism and mental health worlds to contribute to this blog from time to time…

🙂 JP

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