Blog

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)