I am a forty-something Autistic woman. I was diagnosed when I was twenty, way back in 1994. I was given a diagnosis I didn’t understand, a word I had never heard before ‘Ass-ber-gers’. I thought it meant all the bullies who made my school days a misery had been right. The diagnosis would mean that everyone would bully and victimise me, I was officially ‘weird’ – it was written in my DNA and in my mind. Needless to say I didn’t take to this new piece of diagnostic information very well.
As a child I recall occasional friendships with people who seemed to ‘get’ me better than others – the boy who was passionate about different castles in England and built scale models of them, the girl I sat next to in English class who collaborated wiht me on science fiction and fantasy stories. We made up characters for the stories and a whole imaginary world. There was a group of boys in high school whole reimagined shakespeare plays as comedies (and they were absolutely hilarious too!) Through the benefit of hindsight, I recognise a number of my school friends as probably being Autistic themselves but there was no word for my own little quirky ‘type’ when I was at school in the 1980s.
I eventually accepted the obvious – that I was an Autistic woman – and started on my own Autistic Odyssey. This would have been in 2001 – a time when understanding around Autism was still not widespread. Everything I read about Aspergers or autism was focussed on perceived deficits. The idea of Autistic pride was a as remote as the surface of the moon for me for many years. I would tell selected people who I thought were less likely than most to run me out of town carrying pitchforks and torches! (or the equivalent in judgement or rudeness). When I disclosed – sadly ‘admitted’ might have described the process more accurately – it was in whispered tones with much justification and apology on my part.
In 2005 I was still something of a self-hating Aspie but something happened which changed my world fundamentally. I met prolific and influential Autistic author Donna Williams who became my Autism world mentor. I learned about ‘stimming’ and that being sensory seeker who loves sparkly things was not uncommon in the Autism community. In fact I learned there was an ’Autism community’ and that I could belong to it if I wanted to. Donna helped me in a another, very significant way too. She suggested I write my story. Apparently of all the Autistic autobiographies, there was nothing approximating my tale of poor choices, prison, drug and alcohol issues and eventual redemption. I wrote the book. It took four weeks to draft, two to edit and three weeks for the publisher to say a big, emphatic ‘yes please Jeanette! Have a contract.’ I was very happy and absolutely terrified as I didn’t think I knew a lot about Autism.
The book opened a large number of doors for me, including a bit part in the production which is Autism advocacy. As years went on, I learned about Neurodiversity, Autistic Pride, the idea of ‘Different not less’ and ‘Nothing About Us without Us!’ While Autism had always been presented to me as a negative, something in need of treatment and fixing, here I was meeting other Autistic people who saw their differences and quirks not as something to hide bit as a source of pride. I loved this. I had feared my diagnosis would result in ridicule and bullying, but what it did was the opposite. Being proud of who I am made me able to value the Jeanette that the bullies hated for no good reason. I reclaimed my identity.
However this blog is not just a fond memory of me learning to value myself – although that is certainly a good thing. It is about a thought I have had for a while – the concept of the value of Autistic culture. I get to go to a lot of big Autism conferences at the moment, which is challenging and very enjoyable. At these events, there is a ‘quiet room’ where Autistic delegates and speakers can go if everything is overwhelming or they just need some time to regroup in a quiet and hopefully dimly-lit environment. I tend to spend most of my time at conferences in the quiet room, except the bits where I’m speaking.
A while ago I noticed something, after seeing groups of several Autistic people together. We are told all our lives that our social communication is deficient. We apparently have ‘poor social skills’ and ‘poor communication.’ I will refute that here and now as complete rubbish. We don’t lack communication or social skills – we lack neurotypical or non-autistic social and communication skills. When I am in a room for of Autistic people, there aren’t really communication ‘mistakes’ – we understand each other.This is because we use a similar communication style. It is like a language. Imagine that Autistic people are all speaking French, and non-autistic people are speaking Italian. When French speakers are with other French speakers they understand one another. However if they wander into a room full of Italian speakers, they will struggle to be understood. Autistic communication isn’t deficient or wrong, it is simply not non-autistic communication. Because most humans are non-autistic, they tend to assume that any deviation from communication in the way they know it is ‘wrong’. It isn’t. Autistic communication is understood by Autistic people because we are speaking the same ‘language.’ You would never say that Italian is a superior language to French – they are simply different. The same needs to be understood about Autistic communication
A lot of Autism ‘therapies’ and intervention are based around teaching autistic people to speak non-autistic ‘Italian’ better. I will say to non-autistic people. But Italian speakers can learn French. By that, I mean that it does not have to be one-way. Non-autistic people can learn Autistic styles or communication and interaction,
I attended a great conference recently which was probably the most inclusive and respectful one I have been to. The international keynote speaker was the wonderful Steve Silberman, who wrote Neurotribes. (I would suggest reading his book if you are interested in the sorts of issues in this blog too.) Steve said that the Neurodiversity movement is the civil rights movement of the 21st Century. I tend to agree with Steve. I think what we need to do is instil in Autistic people that sense of pride and self-worth but we also need to try and teach non-autistic people – especially those in places of influence over autistic people’s lives – to speak a bit of our Autistic language.