There Are No Autists On Autopia


As an autistic person in a non-autistic world, I experience life as a fish out of water. Or perhaps a fish-in-the-wrong-water, a freshwater fish in seawater perhaps. It’s clear that I do human differently, and that most of those around me have a how-to-person manual that I’ve never been privy to. It’s a bit like back in school where you realise that the reason that none of it is making sense is that not only are you on the wrong chapter, you’re not even looking at the right book. 


It was ever thus. My earliest memories, in the words of Christine Blasey Ford “indelible in the hippocampus”, are of repeated attempts at integration with my peers that failed due to one faux pas or another, where I seemed to say either too much or too little, or what I said was just plain wrong. There’s a bar at Basel-Mulhouse airport which straddles the French/Swiss border, so you’re served in euros on one side and Swiss francs on the other. I seem to be permanently stuck on the Swiss side with a pocket full of euros. It’s currency Jim, but not as we know it.


In short, like many of my autistic fellow-travellers, I’m at cross-purposes with the world, a foreigner in my own lands. One of the ideas that this has given rise to is that we autists come from another planet and like David Bowie, we’ve fallen to earth in error.


This idea goes back quite a way.  In speaking of his 1992 meeting with Donna Williams and Kathy Grant, Jim Sinclair recalls feeling that “after a life spent among aliens, I had met someone who came from the same planet as me”. In his seminal “Don’t Mourn For Us” text from 1993, he refers to “an alien child who landed in my life by accident”.


In “The Martian In The Playground”, Clare Sainsbury describes standing alone in the school grounds, dreaming that one day a spaceship would land in front of her and the beings who emerged would say,


“It’s all been a dreadful mistake. You were never meant to be here.” 


It’s also epitomised in the name of one of the earliest online autistic communities, wrongplanet.net from 2004, and even earlier with planetautism.com, where we find autism  referred to as “Wrong Planet Syndrome”.


(This is an important part of our history, as it’s one of the first examples of the autistic community developing our own terminology and language, a necessary precursor to telling our own stories, creating our own narratives and building an autistic culture. See the notes below for a bit more.)


So let’s assume for a moment that we’re from an autistic home planet where everyone is autistic. Which we could give a name: “Autopia” sounds suitably autisticy-planety. Not to be confused with the Disneyland attraction “Suitable for guests with a learning disability, autism, behavioural disorder”, the car dealership in Concord, Ontario, or the one-off Dr. Who comic.


Autopia would be, as the name suggest, an autism utopia. It’s a place where trains would run both on time and on cute little noiseless rubber tyres, a bit like some of the Paris Metro lines, (1, 4, 6, 11 & 14 if you’re in town) and where on those trains the seats would all face in the same direction. And as Daniel posted in an NAS forum discussing an autistic utopia, it’s a place where hairdressers wouldn’t talk to you or have mirrors and no-one would leave things in the wrong place on supermarket shelves. And in those supermarkets, there’d never be autism “happy hours”, because every hour would be autistically happy. 


Needless to say, in shops, hairdressers and trains, as in every facet of life on Autopia, appropriate autistic accommodations would be implemented as a matter of course, as autistic sensibilities and needs would be the default. Though as Max Sparrow points out, they wouldn’t even be called supports or accommodations, they would just be called “infrastructure”, i.e., the way we do things. 


And so with their needs met and their specificities not just recognised but accepted as the norm, the population on Autopia would go about their lives, happily and contentedly autistic. 


Or would they?


Let’s pick this apart a bit. Before you can be happily autistic, unhappily autistic, or anythingly autistic, you have to ‘be’ autistic in the first place. But how do you get to ‘be’ autistic, i.e. have an autistic identity and belong to the category or group we refer to as ‘autistic? In fact, how do you get to ‘be’ any identity?


Identities, autistic or otherwise, are constructed through interaction with others. In “Mind, Self and Society”, Herbert Mead showed how identities are produced through agreement, disagreement, and negotiation with other people. Lev Vygostky managed to sum this up as: 


“Through others, we become ourselves”.


Simone de Beauvoir explored this process of identity production in relation to gender in her famous quote: “One is not born, but rather becomes, a woman (though see note re this translation). Which disability studies scholar Rosemarie Garland-Thomson took as the starting point to her essay, “The Story of My Work: How I Became Disabled”. She explains that “I reframed who I was in the light of de Beauvoir's explication of how culture made women into women”, and in doing so concludes, “Feminism made me disabled”.


In that essay, Garland-Thomson cites what she refers to as the best opening line in disability studies: “Writing this book made me blind” from Georgina Kleege’s “Sight Unseen”. Kleege’s meaning is that before writing the book, her visual impairment was simply how she experienced the world, but that through writing and researching it she came to understand for the first time how others saw her. A not dissimilar example comes from Caroline O’Neil: “I became deaf when I was 5 through meningitis. I didn't become 'Deaf' until I was around 16 when I attended my first Deaf Rally.”


(As an aside here, Panda Mery has suggested we adopt a similar capitalisation in regards to autism. i.e., small-a autism for the - what shall we call it - neurophysiological reality for the person concerned, vs big-a Autism for the socio-cultural construct, i.e. how non-autistic people and society at large see us. It goes without saying that what I’m talking about here is big-a Autism.)


Of course, just as identities can be constructed, they can be un-constructed. For an example, we only need look at the various iterations of the DSM and the shifting sands on which the diagnosis of autism is built, where diagnosis and their associated identities such as PDD-NOS and Asperger’s come … and go. Poof, just like that, with the stroke of a pen you’re no longer who you were. Something similar occurred after homosexuality was removed from the DSM in 1973, summed up in the Philadelphia Bulletin’s headline: “Twenty Million Homosexuals Gain Instant Cure”. Overnight, homosexuality stopped being a mental disorder.


In the case of autism, we’re still waiting our turn for a cure. In the meantime, autism, or rather Autism, continues to be an identity that is “materially and discursively produced within specific sociocultural contexts” (O’Dell et al.).


The mechanism of this identity production is little different to the creation of the identity “disabled”, which under social model framing is produced through disabling environments or acts of disablement. Similarly, autism is an identity that is produced through the act of autisming.


But who is it that does this disabling, or our case, autisming? As we’ve seen above, it’s ‘others’: 


“Social identities are relational; groups typically define themselves in relation to others. Identity has little meaning without the ‘other’”. 

Andrew Okolie. 


OK, but then how do you get to be an ‘other’? 


“‘We’ cannot belong to any group unless ‘they’ (other people) do not belong to ‘our’ group.” 

Zuleyka Zevallos


So in the case of autism, first of all we need others to make us autistic, but secondly, we need that these others are not members of our group. i.e. not autistic.


So now let’s return to Autopia, the garden of autistic Eden with its perfect supermarket shelves and where everyone is autistic. Or are they? Because here we run up against a bit of a problem. If on Autopia everyone is autistic there won’t be any non-autists. None. So there wouldn’t be any ‘others’ to do the autisming and make the Autopians autistic. 


In fact, on Autopia, not only would there be no autists, there wouldn’t even be a word for autism - in the same way that on our own planet, there’s no word for ‘non-autism’ and we’ve had to invent terms like ‘neurotypical’ and ‘allistic’. On Autopia, people would just be ’us’ and ‘we’ and ‘everyone’. And there’d be no such thing as an autistic identity, any more than there’s a non-autistic identity on our own planet. Here, no-one who’s neurotypical or allistic thinks of themselves as non-autistic. (I can actually speak with some authority on this, because the realisation that I was autistic occurred to me in a single light bulb moment which came totally out of the blue. So I experienced a clearly delineated non-autistic before and an autistic after, and I can assure you that at no time in my many as a neurotypical did I ever once think of myself as non-autistic.)


The autists on Autopia would be like Georgina Kleege before she wrote her book. Autism would simply be how they experience their world. And in the absence of a non-autistic perspective on that way of experiencing the world, they would have no sense of being ‘autistic’, and so neither the word nor even the concept would exist. In short, there would be no autists on Autopia.










Copyright © Peter Crosbie 2020. All Rights Reserved.

Notes:


- I’ve used the term “autist” throughout to refer to an autistic individual. This is part of my one-person crusade to give us a noun of our own. The term “autistic” is often employed as a noun to refer to us, but I can’t get my head around the adjective-like “ic” ending. An artistic person is an artist, so it follows that an autistic person is an … I also feel that using autistic as a noun robs us of the right to have both a noun AND an adjective all to ourselves. I want it all, and I want it now. Heck, even the French have a word for an autistic person: “un autiste”.


- OK, some freshwater fish can get by in the ocean - and vice versa. Salmon come to mind. If you want clarification on saline tolerance in fish, you’ll be needing stenohaline vs euryhaline. It’s a subject with far-reaching consequences. Especially if you’re a fish.


- The history of autism from our side of the story is yet to be written. Fragments and individual commentaries exist, but much of the material from the days of dial-up internet is disappearing rapidly. Already, some of the online content is only available through the Wayback Machine, but I have no idea what has happened to material in the early mailing lists, newsgroups or chat rooms. This page from an archived version of Jypsy’s site covers the state of play in early 1999, but the majority of these links are no longer working:

https://web.archive.org/web/19990202184601/http://www.isn.net/%7Ejypsy/mailist.htm


There’s a project or three here for someone, firstly documenting, secondly archiving, and thirdly writing it all up so that we can pass it down to authlings of the future.


- Though I feel that this translation loses some of the sense of de Beauvoir’s “On ne naît pas femme : on le devient”. For me, a better translation would be something like “You are not born a woman: you become one.”



References:


Don’t Mourn For Us

Jim Sinclair in Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993


Autism Network International: The Development of a Community and its Culture

Jim Sinclair (2005)


The Martian in the playground: Understanding the schoolchild with Asperger’s syndrome

Clare Sainsbury pp. 8-9 (2000)


Is Autism a Disability? Are Autistics Disabled? (Are These the Same Question?)

Max Sparrow (2016)


The Story of My Work: How I Became Disabled

Rosemarie Garland-Thomson (2014)


d or D? Who's deaf and who's Deaf?

Caroline O'Neill (2003)


Critical autism studies: exploring epistemic dialogues and intersections, challenging dominant understandings of autism.

Lindsay O’Dell, Hanna Bertilsdotter Rosqvist, Francisco Ortega, Charlotte Brownlow & Michael Orsini. (2016)


What is Otherness?

Zuleyka Zevallos 2011) 

(Great article on otherness, with lots of references re Gender, Race, Culture etc.)