Being an autism advocate can be a funny old life. I am a person with lived experience of autism who is proud, vocal and has lots of self esteem. However, I live in a world that devalues the experience and very existence of people like me. So while I don’t care how ‘normal’ I might appear and am proud of my various Aspie quirks, I live in a world where being different – particularly being the autistic brand of different – is seen as shameful and ‘weird’. My job – or at least one of my jobs – as an advocate is to address this issue and make the world a better place for people like me to live in. To build acceptance and inclusion, to make the way easier for others on the spectrum.
This has not always been the case. I spent so many years wanting with all my being to be like everyone else – whatever that meant. I had low self-esteem. I didn’t want to be different. I wanted to be one of the ‘cool kids’. Something happened when I was 30 that made those things kind of impossible – I wrote a book about living with Asperger’s syndrome. The funny thing was that I didn’t do the sums and prepare myself for the thing to be published, but it was. I suddenly become an accidental advocate. I was thrust into a world I hardly understood. Worse still, people I didn’t know seemed to value my opinion about things I felt I didn’t know anything about. I was torn between being excited about my new-found recognition and thinking a sincere and heartfelt ‘what the hell?’ when confronted with yet another thing I had previously been unaware of. I’d tell a room full of autism world folks how I hated discrimination and thought everyone should be able to be as openly Autie as they chose while at the same time worrying whether friends at uni thought I was ‘weird’.
As time went on, I grew in confidence – both as a human and as an autism advocate. Before long I really was a proud and confident advocate who valued and liked myself just as I was. I suddenly started noticing that some people said really inappropriate things to me, either about me or about other autistic people.I was horrified. Had this been going on all my life and I just hadn’t noticed? What was wrong with these people? Things people said that I noticed included such gems as ‘You don’t have to say you’re an Aspie Jeanette. You could pass as ‘normal’, ‘Are you like that lady that thinks like a cow?’ (Presumably they were speaking of Dr Temple Grandin who I’m fairly certain thinks like a person, not a cow!). Other nuggets included ‘You don’t look Autistic’ and ‘can you find a friend for my daughter. She does’t have any friends! ‘ (Said daughter was standing right next to her mum and me at the time. I could only conclude that her mum wasn’t much of a friend.) I came across people who had worked as teachers and thought it was perfectly OK to manhandle young Aspie students to make sure they looked them in the eye, people who saw us as deficient, broken, alien and worthless beings. While some of the quotes above are rather amusing, I don’t entirely mean for you to be amused. I would prefer some horror or disbelief as a response as well.
Put simply, we are different, not less. I do not see disability when I view myself, I see difference. I suppose it’s not an exclusively autistic issue. People from other ‘disadvantaged’ groups have to deal with all these sorts of prejudices. The thing that worries me most is the level of power and superiority that it denotes. On one end is the concept of use being mentally deficient, less than human, even worthy of death. One the other end there’s pity and paternalism, tokenism and condescension. Both ends of that spectrum are destructive, disrespectful and damaging.
So I suppose I should be glad that I became an accidental advocate back in 2005, because there is so much work to be done. I don’t really want Autism awareness, at least not in isolation. I want autism understanding, respect, value, inclusion, communication. Basically some neurodiversity would make the world a better place for us all.
I constantly remind myself that if I am negatively impacted by discrimination and ignorance, me – a proud Autie who values and likes myself just as i am – how much more negatively will it impact on those who do not have confidence and self-esteem. We all need to work towards making a difference here. If someone says something disrespectful or prejudiced, I know I will be calling them on it.
Me doing my bit to promote neurodiversity 🙂