A few years ago I was at an autism conference in the quiet room, along with many of the other autistic delegates. We were having this great conversation. I hadn’t ever had such a good conversation with a group of more than a couple of people. Usually when I am in a group of people I don’t know when or how to ‘break in’ and either interrupt or sit there waiting for a cue which I never notice. But in this discussion there was an amazing flow of ideas and sharing of thoughts, We ‘got’ one another – not just with the topics we were discussing but it seemed at a much deeper level as well. At that point I realised that I knew how to speak a language that I hadn’t thought of before: I was ‘speaking Autistic.’ I imagined that if a neurotypical person came into this room they would struggle to break in to the conversation, the topics might not interest them and they would feel like an outsider, as I often do in conversations with people who are neurotypical.
I realised at this very significant patin my life that Autistic people have in a sense a culture of our own. This is why I sometimes capitalise the ‘A’ in Autistic. Neurotypical people are a culture as well, with their own language andcustims. It is like we speak Spanish and they speak Bulgarian. Neither language is better or worse than the other, they are simply different.
From this I also thought that the reason our Autistic communication has not really been defined in these sorts of equal terms until very recently has been due to not only our minority status but on how autism up until very recently was only viewed as a problem, a deficit and an ‘affliction.’ The DSM-5, the diagnostic manual used in most English-speaking countries to inform autism diagnoses, describes Autistic communication as
Persistent deficits in social communication and interaction across multiple contexts, as manifested by all of the following (currently or by history):
Deficits in social-emotional reciprocity
Deficits in nonverbal communication behaviours used for social interaction.
If you have an autism diagnosis you have most likely been assessed against this or the predecessor of this manual, the DSM IV which, while the diagnoses are different, the deficits-focus is just as evident. The diagnostic literature is strongly based in the medical model of disability. It gives a person a ‘label’ which enables them to access support services and healthcare and things like that. If that is all it is used for then that can be very useful. Autistic people in current societies face discrimination and our experiences can be very challenging. Being able to access services can be incredibly helpful.
However, there is a catch. A diagnosis is not only the means to access support services. In the case of autism and many other diagnoses – it is an opening to a sense of identity and with that, one’s ‘tribe’ of Autistic peers. There is a clear reason that many Autistic people use identity-first language (‘I am autistic’ rather than ‘I have autism’). Many of us understand autism to be an integral part of who we are. We do not see it as an add-on but as part of our very self. While this is not true for all Autistic people, it is for a great many.
So between the medical model on the one hand and the Autistic identity (sometimes described as ‘Neurodiversity’) model on the other, where does our communication sit? As with any culture, our Autistic ways of communication – our ‘language’ if you like – are vital to what makes us who we are. Unlike many languages though, for a very long time few people have seen autistic communication as anything but disordered or deficient. For people who do not use verbal speech, this ‘othering’ and dismissing their language can be even more severe.
A very short while ago in the scheme of things some Autistic people started to challenge the ‘you are all broken and defective’ sort of view and declared that we are different not less. Our communication styles are also different not less. Much of the communication difficulty experienced by autistic people stems from that gap in communication between neurotypical and autistic ways of expression. One of the most challenging things for me involves explaining to people that there are different ways of communication to start with!
So to get back to my room at the conference in Autistic space. I realised that I have spent my whole forty-three years of life trying to learn to ‘speak neurotypical’: trying to work out hidden meanings in conversations when I only operate on one level, trying to suss out whether the compliment I gave my boss because I liked her dress had been misinterpreted by my colleagues as something other than was meant, trying to figure out what facial expressions mean when they change so quickly. …And I wonder what the world would be like if more people realised that Autistic is like another language which can be learned by neurotypical people too. I love that I have discovered my Autistic culture and fellow Autistic compatriots. It is a strong position to stand in after so many years of being told I was getting things ‘wrong’ when in fact I was just using a different language.
And when I think about it, the advocacy work I do with neurotypical people form different walks of life is like a lesson in Autistic language and culture. I like that.