The Autistic Empire had a presence at the Autism Show London 2019 this year, where we had the opportunity to speak to hundreds of people about our work and our plans. Alex and Sarah also had a speaking slot at the Autism Hub Theatre (managed by the Participatory Autism Research Collective) on “Sense and Sensibility: findings from our Grand Sensory Survey”. You can read more about the details about the Survey here (please note the survey is now closed).
Below are a transcript of Sarah’s introductory remarks – if you want to find out more about the findings of the survey, we will be speaking at the other Autism Shows as well:
Saturday 22nd June 12.00 – 12.30, Birmingham (NEC)
Saturday 29th June 12.00 – 12.30, Manchester (EventCity)
We will release a write-up of our findings and what we intend to do with them after that.
“Hi there, my name is Sarah McCulloch and I am the founder of the Autistic Empire, which is an autistic social organisation built by and for autistic adults to form community based on autism as a civic identity and to provide practical tools and services for all autistic people.
I became an occupational therapist after a horrible experience seeking a autism diagnosis for four years. It took forever, I didn’t need it to know that I was autistic, but I still had that moment of terror of ‘but what if he tells me I’m not?’ I wanted to try and find a way to deal with a system that keeps us waiting around for years and then only validates us in our neurology if we are traumatised enough that we can’t teach ourselves how to function in society or mask things we want to hide. We founded the Empire on the basis that the number one problem all autistic people have, that we’ve found, is low self-esteem. We removed all medical terminology, all critical disability terminology, and even trying to portray autistic as a difference, because ultimately, difference from what?
The terminology of difference still centres neurotypical experience as the norm. I do not want my mind to be defined against someone else’s. We should be sufficient in ourselves.
So with the Autistic Empire, what we are trying to create is a autistic-majority society where autistic perspectives of the world are assumed. Autistic culture exists, as you’ve heard from many other speakers on this stage. The problems we may have as treated in the Empire as matter-of-factly as the visual impairment that means I am speaking to you wearing glasses. In a society, where nearly half of all adults wear glasses, no-one even thinks about the fact that technically, half of all adults are disabled and require visual aids to navigate their way through life. In the Autistic Empire, we are creating a community where the norms and expectations are set to those of autistic people the same way that signage in this society is set to the expectations of certain ranges of vision. In our vision, autistic people are free to be autistic, to develop themselves and work on whatever sensory, emotional or social issues they have, without feeling like they’re doing it wrong.
The unique advantage of this approach is that we are recruiting people who did not previously see themselves as disabled, or in need of help, or access to services. Based on both my personal experience after a decade knowing I am an autistic adult, and also in my professional career as a mental health OT, it is my belief that the number of autistic people is hugely underestimated, and that perhaps the majority of autistic people have no idea that they are autistic. But they don’t know because our current methods of identifying someone as autistic is based almost entirely on what you can’t do, rather than what you are.
We cannot liberate ourselves as a people until those of us who are managing in the world, who maybe feel like there’s something odd about them, like they don’t really understand other people, but they’ve still got partners, and friends, and jobs, maybe they keep losing jobs, but maybe they invented Facebook, see themselves in us and take their place in their community where they belong. We cannot function when our most successful citizens, and our wealthiest, do not contribute to our community because they have no idea what we have to offer them. Autistic people built the infrastructure of this society, we discovered the maths, we designed the systems, and we spent thousands of years taking things apart over and over again until we thought of something better. In return, I think we deserve to be happy.
We’re at the very beginnings of this process, and most of the people that we’ve met so far have been haphazardly found through our social networks and ironically, because they work with autistic people and loved the idea of what we were doing without considering that it might be for them as well. The people that we have met who we’ve informed that they are likely autistic have said that more than anything, they feel relieved. They have an explanation for why life wasn’t working for them. The world makes more sense than before they spoke to us.
The thing about finding autistic people who have no idea that they’re autistic is that they don’t google “am I autistic?” They don’t go to their GP and ask for a referral to a service that might not exist. The Autistic Empire is therefore trying to find what commonalities we have with each other that allows us to identify whether a person is autistic or not that’s more concrete than aspiedar and which doesn’t involve having to spend two hours with a psychiatrist and a letter from your mum. Given that variant sensory experiences is nearly universal, we started there, and ran a survey which focused almost entirely on the senses. And I am now going to hand over to Alex to talk about what we found.”