Note: This post is probably going to ramble because making the words go is difficult for me at the moment. If you can read through the rambles, you’ll eventually get to what I’m trying to say. Apologies in advance. Sometimes I have things to say but I don’t have the skills to say them well.
“Navigating lived experience” is something I’ve been thinking about for a little while. A quick google tells me that this isn’t a phrase I’ve made up. But, it is a thought process of mine which has been going on for a few months now.
Before I begin explaining what I mean by navigating lived experience, I need to address a few things.
I read something a little while ago that stated that autistic people have no audience awareness. Let’s smash that myth, shall we?
I’m writing this mainly for myself and other autistic people. I do most of my writing for me. It is to assist me in sorting out my thoughts around various topics. A secondary consideration is who else might read my writing. In terms of this site, that audience consists primarily of other autistic people and parents (both autistic and non-autistic) of autistic children. When I write, I generally write with my audience in mind. In this post, the people who may find this most relevant are other autistic folks. Non-autistic parents may also find this relevant, but probably to a lesser extent.
So, with that myth smashed, let’s move on a little bit. I’m going to use the word community in this post. When I do, please understand that there isn’t one monolithic autistic community. To explain, I’m going to quote what I wrote in this post:
“There are multiple autistic communities: some who embrace the neurodiversity paradigm, some who still accept the pathology paradigm, some who maintain that functioning labels have a purpose, some who believe that functioning labels are ableist and useless (note: this is my position), some who prefer identity-first language, and some who don’t.
Similar things could be said about autism communities: some parents and professionals believe that a cure is a necessary goal, some parents and professionals accept autistic people for exactly who they are and reject any talk of cures, some parents and professionals believe that ABA is best, while others don’t.”
Who is my community? My community is pretty much made up of a close-knit group of friends who are autistic and uphold the neurodiversity paradigm. I do not actively participate in larger autistic communities. Much like other areas of my life which require social interaction, I tend to stay on the outskirts. That’s where I’m most comfortable.
Does that mean that I have created an Autistic Echo Chamber? Well, yes and no. Yes, I have literally created a Facebook group called Autistic Echo Chamber. It’s tongue in cheek though. We’re constantly being told that we’re creating echo chambers, so I did the thing. No, it’s not really an echo chamber. Despite all subscribing to the same values, we’re still different people who hold different opinions and ideas about some things.
Anyway, trying to get back to my point…
What do I mean by navigating lived experience?
Being autistic means that we know what it’s like to be autistic, but that that experience is a personal one. We have lived experience of being autistic. That lived experience can be valuable, but only when we are able to place it in a wider context.
In order to separate out what is applicable to me as one autistic person and what is applicable to most/all autistic people, I need a way in which to navigate my lived experience. That is where my community comes in. From other autistic people, I’m able to learn what being autistic means to them. They’re able to learn the same from me. Through that exchange of meanings, I am able to navigate my own lived experience. In that way, I can develop a better idea of what being autistic means to me – and to others.
Does that mean that I can claim that I speak for all autistic people?
No, it does not. I am always very wary of people who claim that they can speak for all of any one group of people. No one can speak for all autistic people. What I, and other autistic people, can do is represent the consensus of views our communities have. But, we can only do that when we’ve discussed something in order to develop that consensus.
Too often, I have seen people rely on the concept of lived experience without realising that their personal lived experience needs to be placed in a wider context. When we’re only relying on personal lived experience, we open ourselves up to misconceptions. We can inaccurately assume that our personal experience of a particular thing is due to being autistic rather than due to something else.
We need other autistic people in our lives in order to separate the “just me” things from the “not just me” things. That’s one of the reasons why I have decided to do the weekly Autistic Chat on Facebook. It’s to offer autistic folks a space to navigate their own lived experience through the exchange of ideas and meaning with other autistic people.
That’s how we build autistic identity and culture.