Monday, 15 July 2013

Altogether Autism Conference Speech

I haven't written here for awhile, as I've been busy preparing and practising a short speech I gave as one of a panel of aspies, at the Altogether Autism Conference, last week in Hamilton, New Zealand. I decided to include the full speech here, in case anyone is interested.

"Hello people, my name is Penni Winter, and I’m what’s known as a self-diagnosed, peer-confirmed aspie, or person with Aspergers. What this means, in my case, that it took about two or three years of intensive research and reading before I could accept this new identity, and it took more years and meeting with other autistics before I felt comfortable in it. It certainly wasn’t a step I took lightly, or on some kind of whim.

I always knew that I was ‘different’ ever since I was a young child, and my life certainly hasn’t been an easy one, as I basically stumbled and bumbled my way through a world that I didn’t understand, and which didn’t understand me. I suffered along the way a great deal of personal misery, not to mention chronic depression and low self-esteem. I spent decades trying to either figure out why I’m ‘different’, or to transform myself into something more ‘normal’, or to simply hide the shame of my ‘difference’. I failed badly at all of these tasks, and eventually concluded there was no label that fit me, that I was just an inferior specimen, a sort of lemon off the human production line.

Then several years back, while I was working as a teacher aide, I was assigned one term to working with a young girl with Aspergers. I had heard of Aspergers, but didn’t really know anything about it, so I decided to do some research. Imagine my shock when I recognised not just my student, but myself, in the descriptions. For the first time I saw all my idiosyncrasies listed in stark black and white. It was a revelation, just when I’d decided there was no explanation for my ‘weirdness’. Nonetheless, for a long time, I really struggled with accepting the idea of being autistic. In fact, my initial reaction was along the lines of - “Who, me? Autistic? No *expletive-deleted* way!”

And why? Firstly, because I don’t fit the common stereotypes of someone with autism or Aspergers. I was, and still am, a functional, independent adult, with plenty of verbal ability. I’m also not a child, or male, or any kind of computer geek or trainspotting nerd, I’m perfectly capable of empathy and compassion, I’m not an emotionless semi-robot, and I like to think I have a pretty good sense of humour - I can even do sarcasm, though I do often find it difficult to read other people’s sarcasm.

Secondly, the official criteria for autism seemed extremely negative to me, focussing as they do on rather dry clinical descriptions of autistic ‘deficiencies’. If I had read only those, I probably would have ended up rejecting the whole idea of being autistic, because my self-esteem was quite low enough already. Fortunately, during my forays in the library and on the Internet, I stumbled upon autobiographical books written by other autistics who I could identify with, and then forums and Facebook groups run by and for aspies, as I learnt that they – we – call ourselves.  These played a key role in my coming to accept and even embrace my autism, and, eventually, in finally ridding myself of my sense of low self-worth.

Because in the process of getting to know other autistics, I found that the stereotypes I’d held were demolished and the myths were debunked, as the ‘real’ autistics emerged from the shadows. Friendships – which had always been problematic for me – suddenly became much, much easier, as for the first time in my life, I found people ‘on my wavelength’, who thought, felt, acted and reacted ‘just like me’. A common reaction amongst us, when something was shared, was “you mean you do that or feel that too? I thought I was the only one!” So gradually, I began to think, “hmmm, these people are like me, and yet they’re not terrible people, quite the opposite in fact, maybe I’m not so bad either…” And so that huge burden of self-hatred began to slide off my shoulders.

And eventually, I met other autistics not just online, but in real life as well, most especially through ASK (Autistic Spectrum Kiwis), the group that I’m part of today. And they accepted me, just as I am, no need for shame or pretense or hiding my true self anymore. To someone who spent so long lost in a sort of social wilderness, this still seems like a minor miracle, and one which has greatly enhanced my life. I wouldn’t be where I am today, nor I think would I have a life worth living, if it weren’t for my aspie friends and connections. Because we all need our peer groups, and autistics truly are no exception.

So whether it’s for yourself, your child or student, or perhaps a client or patient, I cannot stress too much the importance for autistic people of the support and friendship of others on the spectrum - no matter what age the autistic person is – autistic children have also benefited from meeting their real peers, and making friends with ‘others like me’. But without such support and companionship, even if it’s only online, we are doomed to being always the ‘weirdo’ or the odd one out wherever we go. And I can say from bitter personal experience, that being that kind of permanent outsider is not the path to a meaningful and happy life.

Thank you for listening."

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