A Carnival of Autism

I have been writing about how academic writing is often classed and gendered. Referring to feminist and Marxist critiques of the writings of philosophers who were not able to be reflexive about their own ideological positions- and all the time I’ve been thinking about neurodiversity and how it can be very hard for academic thinkers to be open about.

Take autism for example. Some good reasons for philosophers not mentioning they might be on the spectrum: it wasn’t a (known) thing until 1943. Fair dos, excellent reason.  But other reasons? For quite a long time Western philosophers were writing from the position of a “Universal subject”. Problematic because that subject was generally a white, European male. But it also meant they didn’t have an investment in saying “Mind, don’t take everything I say as universal. I’m quirky as you like. Sense and process the world massively differently to at least 59 out of 60 people I meet”. Now, in fact, the will to sit in a dusty room thinking obsessively about the same thing for years, while having everybody bring you cups of tea because you’re a genius is actually fairly job-friendly for the neurodiverse among us.

I’ve recently been reading the work of the Russian philosopher and literary theorist Mikhail Bakhtin. He’s most associated with the concepts of the carnivalesque, grotesque realism and dialogism. In extreme summary, he saw people as made up of others, and language as being one way in which people perform the differences between themselves and others. (This is a really crap summary, apologies Mikhail).

I love his work and have recently been musing that I’d think he’s pretty high on the spectrum. I’m not sure why though. Is it just because I like and relate to it? That would be quite a bad reason. Is it because of it’s density? Maybe. But he also writes very clearly. I think it’s something about his insistence on the particular and concrete over the abstract. His passionate, in-depth insistence. His engaging but definite repetition. Language was synaesthesiastically alive to him- it wasn’t just a system. It lived and so he could see its provisional nature: “All words have the “taste” of a profession, a genre, a tendency, a party, a particular work, a particular person, a generation, an age group, the day and hour. Each word tastes of the context and contexts in which it has lived its social charged life, all words and forms are populated by intentions” (“The Dialogic Imagination”: 293)

Despite the sort-of dubious ethics of diagnosing people in their absence, I felt like I had to know. There’s not much biographical information out there about him. He worked in Stalinist Russia, most of his manuscripts were lost or unpublished in his lifetime, but he did get “discovered” and lionised before he died in 1975.

Nonetheless I found these titbits in a Google Books of Michael Holquist’s study of his work; apparently he had a small philosophy group and always addressed it as if he was addressing a large lecture hall. He never asked his students anything about themselves and failed to realise two of his main students were sisters. He was very impractical and refused to answer the phone or letters- his wife did most of the looking-after him. He was perfectly happy as long as he had endless cups of tea and meals at fixed times.

“You see! Told you!”, I said to no one in particular. This man who emphasised the uniqueness of each individual based on the fact that only they were occupying their particular time and place in space, was as neurodiverse as they come (according to me anyway). And found a time and space that worked for his particular brain quirks (partly gendered, clearly he’d have been less likely to find a nice husband to be his philosophy helpmeet if he’d been a woman- and partly classed, luckily he came from quite a well off family who didn’t have to say “Mikhail, you bob off and become the world’s worst shoe mender so you can make a living”).

Much of his work focuses on finding a way to bridge the gaps between self and other, and world and language and other (the false gaps, since they are always-already entwined). He advocated a joyous appreciation of the body, of the material and the here and now. Of an honest appreciation of the gaps in how own knowledge and how they will always need the point of view of others to bring ourselves into a full role in the world. Difference, for him, was a strength not a weakness and the default condition of us all.

Diagnostic attempts: me, women and the AQ-10.

I go to the Doctor and ask for a referral to the newish local autism centre. I have printouts from the National Autistic Society, details of the diagnostic centre, a list of edited highlights of why I think I might be autistic. I name drop Dr Judith Gould, co-creator of the idea of the “autistic spectrum”, who I’ve met and who said, after hearing about my childhood, that I seem like a typical woman on the spectrum.

The Doctor is surprised but obliging. Happy on principle to refer me. He thinks there might be a questionnaire to send alongside the referral. He will look for it. The surgery calls me in to fill in “Just a short tick boxy questionnaire”. I go pick it up and sit down in the waiting room with it on a clipboard. It is the AQ-10. Images of Simon Baron-Cohen, director of the Cambridge University Autism Research Centre flash through my head. He wrote these questions. I hear again the laughter of the (mostly autistic) audience when I had done my own “AQ” (Autism Queer quiz) in a comedy set. I had asked whether someone who suggested that men liked reading about guns and trains and women liked gossip and reading about beauty and on this basis decided autism was symptomatic of an extreme male brain, was an empathiser, a systemiser or a bit of a tit. I hear again and feel the deep sorrow of the audience as autistic performance artist Annette Foster, who was diagnosed in her late thirties, read out an imaginary letter to Simon Baron-Cohen, telling him the impact of his work has made many women with autism invisible, unheard.

I take my pen out and annotate the little quiz, pressing down hard in my annoyance. “This is not a suitable tool for diagnosing adult women with autism” I write in the top corner. “It is based on a male template”. In the question “I like to collect information about categories of things (eg types of car, types of bird, types of train, types of plant etc” I cross out the examples and put “People, autism”. I write along the tick box section alongside it “Many autistic women read a lot of fiction- they are collecting information about people. See Attwood et al”. Alongside the question which asks whether I “Find it easy to read between the lines when someone is speaking to me”, I tick that I “slightly agree” and add, in cramped writing, that “I have developed this skill as i’ve got older because autism is a developmental (I underline this) disorder (I put this in quotation marks). I am a writer and performer so the questions “I know how to tell if someone listening to me is getting bored” and “When I’m reading a story I find it difficult to work out the characters’ intentions” speak directly to skills I have built up over years. I’m now 41: the answers when I was 21 would have been very different. (I don’t bother writing this).Question 10 says “I find it difficult to work out people’s intentions”. The phrasing of this question makes no sense to me at all. I don’t even tick this one. I just write “It depends on the context doesn’t it?” across the dumbly hopeful blank boxes.

The next day, the surgery rings. I haven’t filled out all ten questions, just nine, so the doctor can’t score it, can I come back in and fill in another one? The start of my rant to the receptionist about Simon Baron-Cohen is defused when she says she understands my concerns. Her sub text (I have learned to read these) is “Just play the game here”. I go back in. I tick entirely accurately to how I am now, so I agree that I can read between lines, know how to tell if someone is getting bored and can decipher character’s intentions in stories. I slightly agree that I find it difficult to work out people’s intentions, though cannot resist adding a smaller act of rebellion- just the one note this time that says “The phrasing of this question is still ridiculous”. The next morning, the doctor rings me. He says I scored three in the second test I did. “I’m aware I need to score 6” I say. “You do see the irony here don’t you? I couldn’t bear to fill in the questions dishonestly, which is an autistic trait, and yet that means I don’t get a high enough score?”. I know from his tone that he sees the irony. He says he’s happy to refer me anyway. I had spoken to the referral centre the day before to ask what diagnostic interviews they used and to register my concern about the AQ-10. They say it’s just one of the tools they use, they’d also take into account what my Doctor said. The lady on the phone takes my name, says she’ll look out for it. Though it turns out it will take ten months to get an appointment and even if I went private with them, they don’t have any appointments at the moment and would ring me in a few months. “Wowsers”, my Doctor says, when I tell him.

Today I am thankful. Thankful that over the past few years I have acquired the skills, knowledge and confidence to persist in this situation. Thankful that I probably have the resources to go private somewhere else. Thankful particularly for the solidarity of the autistic people I have met who I know will entirely “get” this situation. But I can feel them urging me on, on behalf of all those other women who might not even get to the point of asking for a referral, never mind having to negotiate the hurdles that come up to tell them they don’t exist. They cannot be seen or heard (“I often hear small sounds when others do not” chirrups the AQ-10, inaccurately). They don’t fit the male template or those blank, dumb, hopeful boxes.

Why Anon?

I am a U.K based, self-diagnosed woman with Autistic traits (and Attention Deficit Disorder traits but those feel less politically urgent to talk about). I might possibly sometimes say I’m a woman with Aspergers. But not in public. Not in my day job. Not where I study either, where the leaflet for people on the spectrum produced by said higher education institution informed me that I didn’t have a sense of humour. I imagined this being my first introduction to my new teachers. “Here read this leaflet about me so you don’t overwhelm me with administration- but please do ignore the bits where it says I think literally and have no sense of humour- what with that stuff being an essential component of what I’m doing here. Right, splendid, where shall we start?”.

I’m increasingly interested in activism and protest. Increasingly convinced that it’s vital that people with Autism and Aspergers are represented in a world which stereotypes them, studies them as if they’re strange specimens, writes about them as if they’re locked-in aliens, makes money out of “curing” them and beats or coerces them so they conform to society’s norms of behaviour and self-expression. I’m also convinced it’s vital that the under-diagnosed women of the spectrum are talked about, represented and, when necessary, fought alongside and for. Issues of class and race, among others are also often ignored in autism talk. But they’re important. They impact on who gets support, diagnosis and who gets to join in the conversations that rage all over the world.

I feel like I can stand silently by no longer. Lurking on blogs and Tweets, posting the occasional thing to Facebook. Especially as the UK government descends into Brexit meltdown and continues damaging social and health care and the US government is…well, Trump. Nuff said. But at the same time, I do not want to come “out” in public. I’ve kept saying “Maybe in thirty years when Autism discourse has moved on and people understand more”. As a self-diagnosed Aspie, I’m not convinced I can shift how people talk about things, not convinced I can stop aspects of my other life becoming confused and tied up in it in a way which is helpful to neither (and I don’t really want to be an exemplar of a “successful-at-life” person on the spectrum either. All sorts of pressures and gaps then build up). But it has only just occurred to me that I could speak out anonymously. And I mean, only just occurred to me after five years of thinking about this stuff, a lot.

I’m going to write about my life as a “passing” neurotypical person and highlight representations of Autistic people and social issues that impact on their lives along the way. I wish there was more I could do- but I do believe in the power of those who do not have voices speaking. In the power of saying what isn’t usually said. I’d prefer not to do this anonymously- but maybe there is something useful about not being able to be co-opted by the institutions with vested interests in the power-struggles around Autism and how it is defined.

My husband just said “You’ll be like Zorro but without the itchy mask”. A keyboard warrior indeed, but maybe there’s some good in that. I’ve certainly been inspired by the Tweets and blogs of Autism warriors. I hope to join in and express solidarity with your good work. More anon.

Autism and Power

Bourdieu…I love him…

In my working life, I’ve always thought about people having a voice and seen that as part of my role. It was something my journalism tutor talked about. It has been something my fellow creative workers in participatory arts have talked about. Now, as a research student, it is part of what I’m studying. How do people use the arts to represent themselves differently. But none of this has been in connection to Autism. Because I’m not out. Because it doesn’t come up. Yet, I’m seeing Autistic people as in great need of all the strategies for being represented and heard that they can get. Some of us are literally voiceless. Some have their voices taken away by family or institutions and organisations, by social systems that don’t recognise who they are and a media which stereotypes and simplifies.

I feel lucky and privileged to constantly be getting new tools for representing myself. For speaking and understanding. Yet I’ve felt silenced in this one (very big!) area of my life and identity. Have felt cowardly for not being “Out and proud”. I have had some forays into Autism world and it has been a relief and a release to be among people “in my tribe”. Once being asked whether a fluorescent light was comfortable for me to sit under stands out as an amazing moment of having my wants and needs accepted as okay and normal!

In this blog I’m going to explore some of those tools and try and intertwine them with a narrative of mine and others’ autism experiences in this world. A world which is currently much bigger on “Othering” people than I’d realised, or wanted to see until the Brexit/Trump tsunami of disaster.

I don’t want this to be an academic or theoretical blog- but at the same time I’m very keen on trying to marry up practical action and activism which is informed by reflection and critical thinking.  I keep coming across researchers and writers on power and representation who, it feels, would have so much to say to Autistic people but I don’t think their work has been particularly applied to Autism issues. I’m going to bring it in sometimes to help develop my conversation with myself (and hopefully others!) about how we might counter the myths and stereotypes and general extreme crap that comes our way.

For instance, I’ve wondered why Bourdieu’s work doesn’t get used more. When I discovered it I thought- hang on!- this French sociologist is able to explain what it feels like not to have the right social skills to fit into your environment. How we’re all supposed to “play the game to fit in” but some people have a better “feel for the game” than others and seem unconsciously to just “get” what we’re supposed to be doing in any given situation. He’s also able to talk about how we internalise external power structures and how society tells us we should be and act- in our actual bodies. How everybody basically carries generations of families being told “You should dress this way, and like this food and enjoy this music and do this job and study this”, inside them. Transmitted in all sorts of subtle ways by their early caregivers and environments. Verbally and non-verbally. He sees your tastes and your day to day behaviours and preferences, even down to how you sit or move as conveyed by these social expectations about your body and mind and tastes.

Some people see his research as really pessimistic because it seems to say that there’s not much room for people to challenge power structures- if they’ve internalised them into their bodies and even down to what they like and don’t like. (For example- people who have had their mind and senses opened to Bach can chat about classical music with fellow middle-class people in part of the general camaraderie and networking with like-minded folk that then means they have access to elite job networks).

However- I’m intrigued about what this means for Autistic folk. How we tend to be less likely to internalise these subtle rules which allow us to “play the game” correctly. It’s why we don’t always “respect” etiquette and hierarchies. But it also means we don’t fall for the bullshit (what he called the “illusio” or illusion that keeps social power structures in place). We shake things up. We see things differently and help other people see them differently. “That Emperor there?” we say “He’s got no clothes on”. It may mean that we don’t belong. It can sometimes also mean that we become chameleons who belong in lots of places because we have to get really, really good at working out the “rules of the game” by observing them and asking them, rather than just absorbing them automatically.

In other cases it means we get a bit over-obsessed with Bourdieu and wish we could mention him and his theories in every single conversation we have. Oh, just me on that then…

(A good two minute video animation to Bourdieu: Bourdieu in a Nutshell)