I was at a conference this week and it generated some interesting thoughts in my mind. The light bulb moment was when a speaker talked about their child being ‘resistant to using the telephone’. I would have said that the child didn’t like using the telephone and I think the speaker would have too if the child were not autistic. Autistic people are frequently pathologised and our experiences seen in terms of being somehow deficient and in need of fixing. I do not want to detract from the conference, which was great, but that comment really set me thinking.
I have spoken and written about the idea that autistic and neurotypical approaches to communication can be seen as different but equally valid languages – as if we are speaking French and neurotypical people are speaking German. If you try to make yourself understood in German when the person you are trying to communicate with only speaks French then you are going to have to work very hard and it will be frustrating for both of you! In similar terms I struggle to understand a lot of non-autistic people and they struggle to understand me. I like the languages metaphor but the telephone comment at the conference made me realise that this model needed to go further.
Seen through the metaphor I described, French and German in isolation are equally valid languages. Neither is more important than the other, they are simply different. However, in reality autistic people are a minority. We can quite reasonably be viewed as a stigmatised or even oppressed minority. We are not just speaking a different language, we are (metaphorically) speaking a different language in a country where we are a minority and few people know or respect our customs and culture. In fact many people in our figurative adopted nation think we are only of value if we lose our culture, language and customs in order to become assimilated.
It can be very useful to learn the language of this ‘country’ and figure out some of the customs in order to get by in terms of communication. Autistic children can definitely benefit from understanding about the non-autistic world – how people communicate, what is expected of them, knowledge which will help to keep them safe from predators and so forth. However, this should not mean they need to forget or repress their own autistic expression and approach.
While some people are welcoming, at times our ‘nation’ can be quite a hostile environment, with people wanting us to not only learn to speak their language fluently and without any hint of an accent but also to forget or squash our own culture. I want to live in a world where autistic experience is not viewed as lesser and I am not expected to assimilate.
Cultural learning does not have to be one way. It is a gift as a member of a minority when others take the time to listen and learn about my world. To my mind this should happen a lot more often.
I ran the expat idea past a few people at the conference I attended. The views people shared with me have mostly been incorporated into this article. One conversation stemming from this idea was around what actually constitutes autistic culture. Aside from thoughts on how we tend to communicate, our forms of expression and how we experience things, there was a lot of discussion about how autistic culture – and autistic people – tend to be very accepting of difference and diversity. Maybe we can teach others in our ‘nation’ about this? In fact when I think about it, what I want from living in this ‘country’ is to be heard and my own culture and customs and language acknowledged and respected for the beauty that is in them. Of course the best times are when I join my fellow expatriates in ‘autistic space’, where everyone speaks the same language and there is comfort and the ability to be ourselves without having to recall how we are ‘supposed’ to be acting and what we ‘should’ say. I need that space if I am to manage in this strange land in which I have found myself.
How do you support, affirm and recognise the strangers in the strange land that we are as autistic people? I think value our different language, listen to our views, respect that our customs and culture are as valid and powerful as yours, ask and listen rather than assuming and learn some our language. It isn’t actually that hard once you make the effort. Yes, do that. That is good.
About Jeanette Purkis
Jeanette Purkis is an autistic author, public speaker and autism advocate who also has a diagnosis of bipolar disorder. She has worked full-time in the Australian Public Service since 2007 and has a Masters degree in Visual Arts. She is the author of three books on elements of autism and hosts an internet radio show. Jeanette has presented at TEDx Canberra in 2013 and at many autism events and conferences, including alongside Temple Grandin in 2015. Jeanette has been facilitating a support group for women on the autism spectrum in Canberra since 2011. Jeanette was the 2016 ACT Volunteer of the Year and a finalist in the 2017 ACT Woman of he Year awards. She lives in Canberra, Australia.