GUEST POST: “My experiences with veganism, being autistic and having mental health problems.”

This post isn’t by me. I’m extremely happy to be able to offer my blog as a space for a good friend to be able to write about her experiences of autism, veganism  and mental health issues while protecting her anonymity. I think her words are extremely important – and they really, really resonate with me – so it’s a privilege to be able to host them here.

She writes …

Talking about my experiences with veganism being autistic and having mental health problems, is perhaps one of the hardest things I ever had to do. There are a lot of reasons that I never intended to talk to anybody about all these things because for many (if not most people) my ideas will be fairly controversial and, perhaps most importantly, it would give them an insight on my personal life that I am not sure I am comfortable with them having. But then again, I have to tell somebody, someday… Because I am pretty sure that am not the only one struggling with these issues or thinking this way. First of all, I want to talk about why I am a vegan. Then I want to talk about how having multiple other identities (autistic, highly anxious individual, immigrant, Greek etc) highly impacted on my ability to adhere by the standards of veganism on various occasions during my life.

My decision to become a vegan was at first out of empathy (yes autistics have a lot of that, despite common beliefs). I always loved animals and I cannot see animals suffer. As many people who include meat in their diet, I did not think of the death the animal that was on my plate had to go through, or their life for that matter. I kind of knew what meat was, but I never really realised it. After all, it looks so freaking different from the whole form of the animal it was taken from (except from fish, but I always considered fish as something a little more than swimming plants for some reason) for my literal mind to make any kind of connection between the two. Interestingly, my first disgust for red meat came when I sliced my finger and removed a piece of skin big enough that you could see underneath it. I then saw my “meat” in all its bloody gore and it looked so freaking similar to the red meat I had been eating that I could not stand the mere sight of red thereafter. For a large part of my life (and despite my father’s, who grew up in an animal farm, gross descriptions of the massacre of the Christmas pig or the journey of the Easter lambs from the day they were born to the slaughterhouse) I believed that the animals that I was eating were living a happy and peaceful life in the valleys and mountains of Greece and one day the just dropped dead so humans went and picked them up much like apples from a tree and brought them to the rest of us humans to eat so that they don’t get wasted. It’s fair to say that I was pretty resistant in comprehending the cruelty that was attached to my dinner choices.

I was first introduced to vegetarianism through a group of spiritual/new age people I used to hang out with at university and their main argument was that meat affects your vibrations, as you consume all the negative feelings of the animal that you are eating. Needless to say I found that argument silly and I wasn’t convinced. Even after becoming vegan I was relatively angry at those people who used such silly arguments to promote vegetarianism, when there are so many serious and legitimate reasons for people to minimise their animal product consumption.

Around late 2011 I was introduced to the concept of veganism for the first time in my life by spending my recently graduated mostly unemployed free time on the internet following links one after the other. And I saw everything. I saw the posts. I saw the videos. I saw the death. I saw the suffering. I saw the factory conditions. And I was horrified. I was hugging my pillow and crying for days. I was emailing slaughterhouse videos to my mother begging her to not serve me meat again, only to hear that these things “only happen in America” and in Greece things are far more humane. Regardless, I started firmly believing that it was wrong of me to use and abuse any animal for my own personal pleasure. Plus, there was another big motivator: according to the internet if I became a vegan I would magically lose all the extra weight that I hated and was bullied of for all my life, the weight which, at the time, embodied everything that I hated about myself and everything that differentiated me from other people (pffff… yeah. One topic at a time). So I made a decision: after the Christmas holiday is over (because I considered it to be impossible for me to tell my parents that I am not going to eat turkey at Christmas) I would go vegan. And I did. And it lasted. For a month…

And here is the vicious circle of my eating habits as manifested by my efforts to “go vegan” and stay vegan.

  • Buying lots of vegan food and filling up the fridge
  • Cooking with the vegan ingredients and trying very hard to manage food planning on top of every other aspect of my life.
  • Having my anxiety taking over my life (as it often did and does) and failing to manage any aspect of life, let alone my food consumption.
  • Failing at eating a vegan diet, feeling like a horrible person, eating my feelings away and feeling even worse about it.

There are a lot of things that veganism made me realise about my eating habits.

I realised that one of the few ways I have to control my anxiety is eating. The other one is self-harming. I know this is going to be a controversial opinion but I consider (superficial) self-harming (aka cutting myself on the arms/wrists with a razor) to be the healthier option, because it makes more sense to me to damage my body “cosmetically” in ways that are going to be easy to heal than damaging in internally in ways that are probably be more harmful in the long term. But the problem with it is that it leaves scars. Scars that other people can see. Scars that are going to tell people things and scars that people are going to make assumptions about, assumptions you don’t want to necessarily want them to make because it feels like inviting them into your problems, even unintentionally. With eating, nobody can see you do it. You can sit alone in your room and eat to your heart’s content whatever you want and then wash your hands, brush your teeth and, unless you have been consuming whole bulbs of garlic one after the other, nobody will ever know what you did.

I realised how deeply entangled our food habits are to who we are. I realised how much culture, relationships, exchange of love and even identity revolve around food. When I first mentioned that I am going vegan to my family members and few friends, I had to endure everything from hearing that it will only be a fleeting phase that I won’t stick to, to collective verbal attacks and abuse about who stupid me and my choices are, to my grandmother’s frustration that I can’t eat her chicken livers in tomato sauce (a dish that was a really strong bonding thing between the two of us during my childhood and adolescence – and I have a REALLY strong bond with my grandmother), to my every “why do you have to be so pedantic and difficult, it just has a little bit of egg white in it” that my ex-boyfriend told me after every accidentally non-vegan dish that he would cook for me (one of the many, many reasons I was constantly told that I was pedantic and difficult). I realised the ridiculously high level of questions and unwanted communication it brings from other people, from genuine curiosity to having to hear yet another silly joke about cows’ tits and how huge they are because of all the milk.

I also realised something that should be fairly obvious: my eating habits will always be with me, coexisting with the rest of my life for the rest of my life. They were there when I was crying every day after school in my first job as a special education teacher for the way my students were treated. There were there when I discovered I was autistic. They were there when my mother used to chase me around the table to get the resignation form out of my hand when I wanted so desperately to quit, because the other teachers simply refused to listen what I struggle so much to communicate. They were there when I was rejected by the (then) love of my life and best friend. They were there when I moved to a whole other country. They were there when I did my master’s, whilst trying to get used to living to a whole other country, all by myself and not knowing literally anyone. They were there when I graduated and was making £600 a month at my first job. They were there when I had to move house, after house, after house. They were there when I was sitting on the bathroom floor, trying to think of ways to end my life. They were there when life got impossible. They were always there… And with the already very disturbed relationship I have with food as well as the ever-present anxiety that never leaves me alone and escalates to extremely dangerous heights from time to time (actually feeling like a heart attack), I tried to manage them as best as I could.

If I was ever to publish a diary of everything that I eat in a day for everyday for an extended period of time, the title people would give me, at best, is “mostly vegan”. Many vegans in particular would be absolutely disgusted by me and my inability to “stick to a vegan diet”. They would call me a bad representation of veganism, give me unsolicited “well-meaning” advice on nutrition and the effect of what I eat on my mental health, mountains and mountains of nutrition pseudoscience and about how to deal with my mental health problems or what they might mean, I would get told repeatedly about how I need to think about “the animals first” and about how they have it worse than I ever could (which, to an extent is true, chances are that I will never be tied upside down, dipped in electrocuted water and then passed in front of a throat-cutting machine that may or may not get my throat and then skinned, possibly still alive), hell, I might even get death threats, as such is the way that the internet seems to work, particularly in certain circles.

But here’s the thing: the definition of veganism is: “a way of living which seeks to exclude, as far as is possible and practicable, all forms of exploitation of, and cruelty to, animals for food, clothing or any other purpose.” And here’s my question: who gets to decide what is “possible and practicable”? Who gets to tell me how manageable my anxiety is, from their perspective of course, and how they “also had an eating disorder” but they overcame it by doing this and that magical little thing? Because in any way other than my anxiety, I have done EVERYTHING I possibly could to be the best vegan advocate that I can. I have learned to cook amazing vegan food that has left even the most hardcore of carnivores utterly satisfied. I have talked about veganism and what it means for me in every given opportunity to people I met. I have spent hours and hours thinking about what is the most effective ways to talk about these things and to who. I have read practically every single thing that there is on the internet about veganism and the vegan lifestyle. I have read practically every single book that was written on the subject, or at least added it to my Amazon wish list. In true autie mode, I thought that the more I learned about veganism, the more of a chance I actually had to stick to it one day. And therein lies an important distinction that needs to be made: my problems were never about veganism. My problems were about how I manage my anxiety and how it manifests in my life because of my individual set of traits. I know many other auties who are vegan and many more anxious people who are also vegans and their anxiety or autistic predispositions have nothing to do with their food choices or even their eating habits. I don’t think that veganism is incompatible with those who have mental health problems or are autistic. In fact, I don’t think that veganism is incompatible with the anybody’s lifestyle, considering they live in the western developed world, above the poverty and don’t have multiple serious food allergies. But I do think that some people, even if they don’t belong in the aforementioned categories, will have a much bigger trouble sticking to a vegan diet. Particularly for those on the autism spectrum, food sensitivities and food aversions may be a huge factor, as well as executive functioning difficulties. At the end of the day, some people find life harder than others, regardless of any individual choices they have to make.

So then what about my veganism? Why do I insist on calling myself a vegan even if I struggle this much to stick to a vegan diet? For me, veganism is a very political decision. I disagree with the assumptions people make about (some) animals. I disagree with the idea of animal ownership and the concept of having complete control over another individual’s way of living and lifespan. I disagree with the idea of human superiority. And many other misconceptions humans have about non-human animals. I also am particularly concerned about the way the food system currently operates and the current food waste levels (which is not an exclusively vegan problem of course, but it is gets particularly alarming when animal products are wasted, given the amount of food, water, space and pollution that went into creating those animal products). I am very concerned with the conditions slaughterhouse workers have to work under, particularly in pass production lines. I am extremely concerned about the environmental implications of animal agriculture. The list goes on, there are so many different issues affiliated with the consumption of animal products.

But perhaps of the most relevance is the fact that I don’t want you to know about my mental health problems or about how I handle them. Shocking as it may sound, I actually consider them a personal matter. And saying that I am “mostly vegan” will first of all be a painful reminder of all my failures and a reason for anybody else to ask me why “mostly vegan” or what I mean by “mostly vegan”. It will give an excuse to people to treat my veganism less seriously and serve me animal products whenever they felt it is most convenient for them to do so. And at the end of the day for all intents and purposes I AM a vegan. Because I am vegan “as much as it is possible and practicable”. It is neither possible nor practicable for me to be a vegan when under acute anxiety. And that is something that I have to deal with, not anyone else. And anxiety is something that, as much as it very much controls my life sometimes, it doesn’t define my identity.

I sincerely hope that I find better ways to manage my anxiety for many reasons, not the least of which is my honest and deep desire to not contribute in any way towards the animal agriculture industry ever again. Veganism is something that I very firmly believe in and I fully intend to be a vegan for the rest of my life. Vegan options are growing by the day and I believe that the day when I’ll have readily available vegan options on those distressing times is not very far. Until then, I’ll do the best I can. And that’s the only thing anybody can promise.

Thinking about the Tyranny of “Social” and being misunderstood – “Stupid and Pedantic” and/or “Blunt and Outspoken”.

I haven’t really felt the urge to blog for the last week or two. Am struggling  with depression at the moment and while this is nothing really unusual or remarkable, it makes life into a series of minor fallings apart and getting back together again, which are tiring and make writing personally into too much of a mental mountain to climb.

Also though, I don’t really think the internet needs my introspection and emoting simply for the sake of personal “writing therapy” – it’s quite boring really. So, it feels important to think that what I’m writing serves some kind of advocacy purpose, rather than only being about myself, in the sense of “telling my story” for the personal sake of it.

However, I think that what I want to write in this post does serve that advocacy purpose. It’s about social “misunderstandings” that can happen (especially to autistic people, but to others as well) – and tries to cover some of the problems with “social” that can be hard to talk about in real life, because “social” is such an emotive, moralised and normalised concept that to problematise it can be to confess to “personality flaws” and “weaknesses” that are tough to admit to. I guess I’m trying to challenge some of the more pernicious aspects of stigma that I’ve experienced in relation to “social”.

So these are two types of “misunderstanding” that happen when people don’t understand how I (can’t) “do social” – how confusing it all is, and how I can often feel like a fish out of water while (apparently) doing a good impression of gliding swan (ugly duckling?)

Stupid and Pedantic

One thing that I find particularly confusing is the fact that people have told me for as long as I can remember that I’m supposed to be “bright” and “intelligent” – but I’m really not sure what this actually means. There’s obviously some kind of evidence for it in academic marks and grades – but it has always, for as long as I can remember, gone alongside being laughed at (with? Never feels like it) for lacking “common sense” and saying “stupid” things. This generally seems to happen when I fail to understand the context of a situation, so I say something, or ask a question that other people have avoided because they know from the context that the statement or question is implausible. It means that I often miss the point, and it makes asking questions feel like a really risky business.

In my teaching, I’m quite clear and explicit that there is “no such thing as a daft question” – because I don’t think there is. All questions are hard if you don’t know the answer to them yet. But I still have students who don’t dare to ask questions, or who preface them with “this is probably a daft question…” because they expect to be laughed at. Mostly I feel like that too – and it doesn’t have to be because the individuals present at the time are particularly cruel or likely to laugh at me, it’s just memories of being totally lost in interaction and not knowing how to rescue myself – and times when people HAVE, most definitely laughed at (with? Never feels like it) me.

The consequence of this is not only personal pain at being laughed at, but a lessened inclination to trust one’s own abilities, and an aversion to trying new things, asking questions and sharing thoughts. Not exactly conducive to learning. Not helpful. And (certainly in more extreme moments of self-doubt) the conclusion that I’m not “intelligent” at all – just stupid but very obsessive.

There’s another side to being a person who doesn’t always infer context though – or who doesn’t make assumptions or guess easily, and that’s the constant need for more information than is generally provided. This happens in terms of instructions – and is why when learning to do something – like acquiring new practical skills (rather than learning ABOUT something), I’m much less anxious if I can figure the thing out myself without the pressure of social attention. When I was at school, my mum spent summer holidays teaching me practical things that I’d have to learn in the following year (like sewing for technology classes), because the anxiety of not being able to do them and not learning in the ways that the majority of the class learned were too much for me to manage. I was just really scared of being laughed at (which was already happening enough anyway).

And this phenomenon has the effect of making people think that I’m pedantic too. A quite simple example will be if someone sends an email with a date and time for something, and they make a mistake which I’m supposed to recognise (from some other contextual information) as quite obviously a mistake – but I don’t know, because I can’t guess and make assumptions, and trying to do so makes me extremely anxious. So, my inclination would be to ask for clarification, but if I do this, I get comments about how it was “obvious” and that I’m being “pedantic”. I’ve tended to stop asking for clarifications because I thought that was the socially appropriate thing to do (other people don’t ask, so the rule must be not to ask), but this just leaves me anxious and nervous. BUT sometimes, when I do question things that don’t make sense to me, I get told that I spotted a mistake and was useful and this is seen as a socially advantageous thing. There’s no way of predicting whether the response to my questioning will be along the lines of “you’re such a pedant” or “oh we hadn’t spotted that – your autistic attention to detail is such an asset” – people are illogical and inconsistent, and it’s all very confusing.

What’s really good is when I can use my need for certainty and clarity and detail for the benefit of everyone I’m with. Last week, I had a meeting about a project I’m organising, and it was lovely because I was able to make sure that every action that needed to happen was clearly defined, with a deadline and person responsible for it clearly set out. We all checked that we had the same expectations and everyone commented that they knew what they were doing and were excited about the project. It wasn’t about me “being autistic” – I just did what comes naturally, in a context where I was able to, and it was appropriate, and it worked. There was no vagueness and no guessing – heaven!

But proper social situations (by which I mean those of a “hanging out with friends” nature, rather than “social” in the wider sense of “interaction with other human beings”) are the worst! Arrangements are often deliberately vague, because who likes being tied down to specific times and plans? (Err … “me” says the small autie voice hiding in the corner). You’re not allowed an agenda for social conversations, so there’s no opportunity to plan or script what you might want to talk about – and anyway, the chances are that you’re not going to be able to talk about anything really anyway, because people very often don’t want to talk about things that interest you (politics, ethnomusicology, textile crafts, swimming and being underwater, German grammar, really, really cool academic literature that I’ve just read…whatever else is occupying my mind at the time). And if you do find someone to talk to, who SEEMS interested in the same subject (because, to be fair, the majority of the friends in my life share at least some of my interests and politics), there’s always the worry that you’re talking too much about it (because it’s in your diagnosis that you can’t tell when you’re boring people) – and anyway (non autistic) people do social lies, so they’d never tell you to be quiet or that you’d talked enough – they’d just talk about you behind your back. That thought hurts.

And this is all before we’ve got onto the subject of “sensory” in “social”.

Quite apart from such offensive and frankly disgusting things as strong perfume, pervasive food smells (except garlic, garlic is fine) and the bizarre social convention of shaking hands (ugh), “social” in this sense means conversation, and conversation means listening, and listening means being able to hear. I can hear – I can hear well – I can hear better than many, many people BUT (like probably the majority of autistics I know), I CAN’T do auditory discrimination. This means that when I’m processing what I hear, my brain doesn’t do the trick that social brains do of filtering out background noise that isn’t useful in the social practice of taking part in conversation. The voice of the person (people) I’m trying to listen to and interact with has to compete with all of the other noises around – including the hum of lights, the buzz of electric wires, chairs scraping, projectors, other voices – and, and, and … attempting to filter all that out (unsuccessfully most of the time) is tense-making and exhausting (and, for me, the single biggest causes of overload/panic/terror/lashing out/ curling up/running away/“looking autistic”), but also, I generally can’t hear what the person I’m supposed to be talking to is saying, so I either have to keep asking them to repeat themselves (there’s only so many times you can realistically do that in conversation), or make a guess (more opportunities for looking stupid if I guess something totally inaccurate). One partial solution is to lip-read – if you ever think that autistics are not being “proper autistics” by seeming to do eye contact – chances are, they might be lip reading!

 

Blunt and Outspoken

The second misunderstanding arises because of my inability to be a proper introvert. As someone who hates “social” as much as I’ve described, it might seem like it’d be easy for me to just keep quiet and be a “shy girl” – society can be quite accommodating of “shy girls”. If I just shut up and kept out of people’s way, a whole load of this social rubbish could be avoided.

But I can’t do that!

Sometimes I think I’m going to try. If I have to “do social” and I really don’t want to, and am feeling quite belligerent about it, or if I really feel out of my depth, I decide I’ll just keep quiet, let other people get on with it, and wait until it’s over. But then somebody says something – and I either know it’s wrong (as in, factually wrong), or I have an opinion – and I just can’t keep it to myself. So I end up sharing it (sometimes in a socially inappropriate way, where I wasn’t even meant to be “in” on the conversation anyway, because I’m not good at observing the walls that exist around different groups in social spaces).

And because I’m only bothering to join in talking/interacting when it’s something I feel strongly enough about, it probably comes across that I’m that outspoken generally. I don’t know that I am though, I just think that if I don’t care about something that much I’m going to let other people get on with it – I’m not going to join in for the sake of “doing social” like other people do. I don’t think “doing social” is necessarily ever going to be my primary aim, because I don’t really know that it’s in my repertoire – if I’m talking to people it’s because I’m interested in the things they’re saying (that’s one of those things that one gets morally criticised for though – because you’re meant to be interested in the person as well, and in “being sociable”.)

There is, however, another way of looking at this “blunt and outspoken” misunderstanding – and that’s to question why it’s a problem. It clearly is a problem, at least to some people – those exact words are in my diagnosis, so were seen by my diagnosing psychologist as being indicative of my “social communication deficits”. But, when others describe me as “blunt and outspoken”, I genuinely think I’m doing “honest and interested” (which I think is a good thing). Honesty and “being real” are really, really important to me. Not feeling like I’ve been honest eats me up inside – which is a big problem when being honest is not socially appropriate (social lies – telling friends they look good when they don’t – telling someone you liked their cooking when you didn’t, as well as all the kinds of bureaucratic “not telling the whole truth” that goes on when filling in official forms). For me, I’d far rather people just said what they mean (which is different from being deliberately cruel – the kind of honesty I’m talking about is meant to help people to move on, give them other things to think about etc and it values them enough to engage with them. Being cruel does neither of those things). And on the “interested” part of “outspoken” – if I’m talking about something I care about, why wouldn’t I be interested enough to appear “outspoken”, and why can’t the people I’m speaking to be “outspoken” back so that we can actually have interesting (and interested) conversation? I don’t mean shouting at each other, I don’t mean being rude and I don’t mean being partisan and ignoring other perspectives – I mean being passionate and engaged. What’s wrong with that? How come that part of me is pathological and diagnosable?

Those are just the beginnings of some thoughts about the “tyranny of social” – and particularly social assumptions. There’s certainly more to say – not least about how “social” has invaded pretty much every job-related person specification, about the perceived morality of social, and about what this means in relation to the marginalisation of autistic people. But those are for another time.

The Politics of Wellbeing

It’s hard to know where to start with this post. I’m so full of things to write – so much has happened today that has challenged me, angered me and made me question what I’m doing thinking that my autistic life could be in any way political – feeling in my heart that I’m right, refusing to believe that I’m intrinsically broken, refusing to let go of my passions but really wondering where I belong – and feeling very let down by some people and organisations that I really thought shared my dreams and vision.

Life sucks sometimes.

However, the one thing that is definitely not an option, that does not fit with my vision at all is giving up and walking away. So I’m going to try to articulate some of what I’m thinking here. It won’t be the full story – the full story is eating me up and making me want to shout and throw things right now, and to try to write it down so that it is coherent and accessible to a reader is beyond my current ability. I’m tired and my head hurts. But I HAVE to write something – so this is what I think I can offer just now.

What I have to offer might sound illogical at first – but I want to question why our society (or at least parts of it, to be more accurate) is so obsessed with individual wellbeing – and what the discourse of wellbeing does – particularly what it does politically.

I’ve come across this personally in two ways:

Firstly – as an autistic who has a history of “psychiatric comorbidity” (the words my clinical psychologist used when reporting about me), I’ve had several experiences of “therapy” and of medication. These have taken different forms, but what they have had in common has been an attempt to identify and to banish “bad feelings”. These attempts have served their purpose at the time, and have undoubtedly kept me safe, but I’m now beginning to think that they were not the whole story – or the whole answer to the problem.

Secondly – I have encountered and observed various attempts on the parts of employers, organisations, institutions to implement “Wellbeing” strategies for employees – often motivated by concerns around staff retention (and to avoid being sued). Such attempts seem to generally take the form of things like 20 minute lunch break sessions in Mindfulness, or equivalent individualised interventions – or possibly institutionalised counselling services – with the veneer of ‘helping’, of the compassionate, benevolent employer – but institutional and individual.

And this all sounds so lovely, right? Personal happiness is the highest thing we can strive for, and attempts to promote this must necessarily be a Good Thing, right?

Well, I’m not so sure…

Wellbeing as Ultimate Goal

I’m questioning what we achieve when we reach our ultimate goal, if we define this goal as personal happiness or wellbeing. It sounds so appealing, but it is – it has to be – individualistic. Often we talk about Asperger diagnosis in these terms – as a route to self-understanding and acceptance, and it all sounds so important. But what does it actually get us? It may make us sleep better at night, it may keep us safe and discourage us from harming ourselves but it does nothing to change the world. In achieving personal happiness, we may manage to gather a few extra crumbs from the table, but we’ve done nothing to question the table arrangements, or to reach out to others who are also starving. It’s individualistic, and individual is divide and conquer. That’s not how I was brought up.

I don’t mean to say that personal happiness, safety, self-preservation aren’t important. They certainly are. We are ineffective if we are ill. I know this from personal experience. What I question is their place as an ultimate goal. To me, acts of self-care are important, but they are important as tactics or tools that enable me to pursue goals I care about in line with my (autistic, socialist) politics – and influenced by the faith community in which I grew up, where the self was important as a vehicle for social change. I want to be well because it helps me to be productive in ways I care about.

Wellbeing as Conquering Individual Mental Distress

This possibly relates mostly to organisational/institutional concerns with wellbeing in employment – but what I mean here is that I feel that the idea of a goal of life without distress (i.e. aiming at total individual wellbeing) is problematic as it cuts us off from interrogating and learning from pain and distress – and using this distress to challenge the systems and practices that cause it.

If we think about physical pain, we can conceptualise it as a warning system that alerts us to a problem that needs to be addressed – some imbalance or malfunction in our system that needs attention. We can mask this with painkillers to ensure our immediate, individual, physical comfort – but if we don’t address the cause of the pain, it is still likely to cause us real harm. Well, surely the same can be said for absence of mental wellbeing – whether we call it distress, suffering, anxiety, depression – whatever. It is telling us something. It is alerting us to an imbalance or malfunction of the system that needs our attention.

And this is why I think it’s potentially so problematic when employers offer individualised approaches to wellbeing. It gives the appearance of intervention – it looks caring. But this caring is offered without any challenge to dominant practices and systems. It changes nothing outside of the individual. It is a painkiller that deadens us to the changes we need to be pursuing structurally – it lets systems off the hook. And it places the responsibility for maintaining wellbeing at the feet of the individual – The idea of going to work makes you cry uncontrollably? Work harder at your meditation. Take your medicine. Don’t challenge though. We are doing everything we can for your wellbeing – so long as it doesn’t involve any change on our part.

That’s why I feel for myself that although (of course) I care about my own wellbeing – I also feel that I am learning a lot from my past and present distresses. And it is working with, questioning and challenging these that is helping me to connect with the world and want to make it a better place.

“Work-Life Balance” – What are we talking about?

 

I’ve been thinking a lot recently about “work-life balance”.

It’s a topic that is talked about a lot around me, but it’s something that I struggle with – and as I think that much of the reason why I struggle with it is to do with the (intense, obsessive, stubborn, uncompromising), parts of my personality – and the ways of working that come out of that – that contribute to my being recognised as autistic, this feels to me like a “social construction of my disability” issue – and I think that expressing my point of view here in my blog is therefore appropriate.

My Point of View? 

Yes. Entirely that. I am in no way attempting to suggest any overarching, universal perspective on “work-life balance”, or to propose any kind of policy that would work for everyone. Indeed, a big part of my reason for writing this post is to challenge what feel to me like established orthodoxies that seem to do just that, and to argue that the situation might actually be more nuanced.

I think the things I’m trying to challenge can be arranged according to two broad themes, namely:

  • Externally imposed categorisations of activities as “work” or not. And established definitions of “work” – particularly the notion that it must be something unpleasant, or at the very least something that must be separate from “life”.
  • The notion that work is inherently exploitative, and that work, career and (financial) success are linked, to the extent that work becomes a competitive zero sum game where the way in which I choose to work has any (or should have any) impact on those in the work environment around me.

I think it’s fair to assume that we all have different individual attitudes towards, and relationships with work and that these are born of the individual journey we’ve made to get to where we are. But the problem, as I experience it, comes from the fact that when we talk about “work” we may assume a unity of experience that suggests that we are talking about the same thing, when in fact we are not. The two themes I’ve outlined can become taken for granted assumptions that develop the power to shape as well as to describe the social world. Therefore, in explaining my experience and my views here, I’m trying to challenge that assumed commonality of experience by being explicit about what I mean when I talk about “work” – and why this discussion matters so much to me.

And as with so much in this blog (indeed as was its original intention) – I know that I am writing here about well established social debates, and that the position I’m taking is rooted in those that are already well rehearsed in sociology, philosophy, anthropology, politics, I’m not trying to claim originality in terms of those debates (you can probably spot the influences – Marx, Geertz, Hochschild, a bit of Gilbert Ryle) … all I’m trying to do here is to contribute my own (necessarily autistic) perspective.

My Experiences: “Work” in Education

I suppose as with everyone (or, I guess, the vast majority of people in our society), my understanding of, and relationship with the concept of “work” began when I was at school.

In primary school, “work” was easily identifiable, and was clearly labelled in everyone’s talk – we had to do “work” and then after that, we could do something we wanted (though this definitely wasn’t expected to be more work). This distinction didn’t really seem to cause other people any problem, and it certainly went unquestioned, but for me it was problematic – activities that came under the heading of “something we wanted”, that were supposed to act as an extrinsic motivation for doing “work” (and that began to establish the distinction between “work” and “life”) were as follows:

  • Sit next to your friends (I didn’t have any)
  • Choose a ‘fun’ activity (but this cannot be the same as “work” – and neither can it be obsessively lining things up, sharpening coloured pencils, sticking your fingers in taps to experience the sensation of the water, or putting books in alphabetical order – those things are just weird).
  • Extended break time (See the first point in this list – extra break time equals extra confusion and loneliness to be survived).

I wanted to work because I enjoyed it. I absolutely loved learning about history, about religions and ethics, about geography and science – and mostly about language (though never about maths – maths is in fact, always, without exception, “work”!) So right from the start my relationship with “work” meant that I was being different from “normal”. I don’t want to say that I was being different from the other children around – there is a strong likelihood that other children might have felt similarly, but the system was set up in such a way that there was a definite “normal”, and going along with the group, and with what was “normal” was advantageous, so I never got to know if others felt as I did.

Then I got older, and I still loved “work”, but my relationship to it took on a different quality. I was deeply, deeply miserable. The world around was hurting me, and I in turn was hurting myself, and I hated everything about school – except “work”. “Work” was what made it tolerable because “work” (the stuff that happened in classrooms) was pleasurable – it didn’t help me to fit in, because enjoying “work” (and being seen to be good at it) doesn’t go with the script – it doesn’t fit well with the competitive, zero sum theme that I mentioned above – so the script dictates that the way to fit in socially is to complain about work and imply that you’re keen to avoid it (as training for an adult lifetime of alienation).

But I couldn’t give up “work” in order to fit in. I just didn’t have it in me. When you’ve experienced the exquisite elegance and sheer poetic beauty of German syntax for example, and when you’re using the technical skills to actually create that beauty – or when you read something and it speaks to you, and those “penny drops” moments happen, when something shifts in your understanding, and the learning you’ve managed through “work” has brought you to a new relationship with the world – why would you give that up? And why is it defined as “work” – as something to be got through so you can get on to the good stuff? Funnily enough, my obsession with German grammar features in my autism diagnosis. I wonder whether all obsessive interests would have been treated equally here (A sports team? One’s own children?) or whether the division between “work” and “life” actually plays a part in how obsessive traits in autism diagnoses are constructed. I don’t know the answer to that – but I’m wondering.

I remember vividly at the age of sixteen (peak social misery as far as school was concerned) deciding that I was going to stick with “work” over “being popular” because “work” would stay with me longer than school did. What saddens me is that that had to be a choice.

“Work” outside of education

So, having done school and university – and via some jobs that very definitely were “work” (and required financial motivation for me to do them), I got to be properly a part of the adult world of “work”. For me this meant, and I think for me it HAS to mean, spending my time doing something that is:

  • Both intrinsically rewarding (I just can’t give up that ‘high’ of learning through “work”), and –
  • That seeks to make some kind of difference in the world (I guess I just don’t want other people to be as miserable, lost and lonely as sixteen year old me).

Those are what I care about when it comes to work. Those are the things that have to come first, and that is the script that I’m working to when I talk about my own adult experience of “work”. I’m not naive or stupid enough to take the financial aspects of “work” out of the equation – society is set up so that financial survival and work are intrinsically linked, and of course I need a certain amount of money to survive – but having done work that has made me ill (and that was comparatively poorly remunerated anyway), and having been sick and unemployed I know a lot more about what makes me tick. I know the place that passion and obsessive drive have in my life, and I know that I can’t function without them – no matter how great the financial reward.

None of this sounds particularly problematic – I could quite easily just carry on working to my own agenda, and doing my own thing.

But the problem comes when my script doesn’t fit with the scripts of others.

I’ve felt this mostly in jobs where I’ve been told by managers that I’m working too hard (when in fact I’m often just keeping quiet about when I’m NOT working because taking a nap or going for a swim in the middle of the afternoon to give your brain a rest have no place in the world of 9 to 5). When I’m told that my working differently – particularly sending emails “out of hours” (which are actually my best times for getting things done) is unfair as it puts pressure on colleagues because I apparently give the impression I expect them to respond “out of hours” (I’ve never said that), and it might create for others a false expectations about our service and what it offers.

The thing I hate most though, is how the script of “work” as being about career, about progression, about financial success and about status commodifies obsessive passion. I hate how when I was enjoying “work” at school this was interpreted as me trying to be better than everyone else. I don’t want to be better than everyone else, I just want to live alongside them and do my thing. And how in adult life, when I talk about “work” in a joyful way, this is either just seen as odd, or is interpreted as me doing what I’m doing in order to try to gain favour with those in power, and to get ahead and achieve status. The status parts of PhD make me intensely uncomfortable for that reason – I don’t want to be noticed, I just want to do what I’m doing because it’s fun and I care about it. And I get really uncomfortable talking about being passionate and exposing this in an institutional context, because it feels like to do so makes it somehow less – like expressing it makes it part of that commodification, and it’s too important for that.

I want to be able to do my work in its own terms – in the same way that it’s possible to take delight in swimming without striving to be an olympic champion. That’s my script, I know for certain that it won’t be the same as other scripts, but I offer it so that whoever reads this blog can compare and contrast it with their own scripts, and see how we fit and how we differ, and what this might mean for how we can “work” together in our shared world.

So, what now?

As with so much in life, I don’t know that I have any definitive answers for social change beyond what I’ve expressed here (if they were so easy, they’d probably have been taken care of by now). I do certainly recognise that need for change at a societal level. I’m well aware that the neoliberal capitalist society in which we live can be – and is, in far too many cases – abusive, exploitative and cruel, and that the fact that I’m not working to this script doesn’t make it any less real in the lives of other people – but I think that locating the search for change within the individual (“you work too hard, you need to change your behaviour” – or “you are not working hard enough/properly – you need to change your behaviour”) and then setting individuals against each other (“you working like that creates unrealistic expectations about our service” or “you working like that is not fair on others who have children or other caring commitments”) is not the best way to challenge that abuse.

In much the same way as I argued against the individualisation of “Imposter Syndrome” (here) I think that it lets the systems and structures that drive this abuse ‘off the hook’, it commodifies and then devalues passion, and in my own case, as my ways of working are so inherently linked to what society understands to be my autism, this individualisation actually contributes to my disablement.

All I can really do with any certainty here though, is emphasise how important this debate is to me. At the moment, my PhD and this way of working are giving me so much –  opportunities to do things that I care about hugely and that feed my passions, but also making me feel that it might be alright for me to “be me” – that my obsessive intensity isn’t automatically something problematic to be hidden, fought against or laughed at, but that it might actually, truly, really be used positively without being twisted and weakened. This feels tentative and uncertain, I’m still not sure I quite believe and trust it, and I certainly don’t want to negatively impact on anyone else by being in this position, which feels like my own personal liberation – but it’s such a powerful thing, I don’t want to lose it.

A Very Short Blog About Being Autistic in the World.

 

I started writing a post this weekend, but I’ve decided that I’m not ready to express my thoughts on the topic in question just yet. It’s a ‘big deal’ and deserves more of my attention than just a quick blog post.

However, in the course of writing that post, I wrote this paragraph, and I want to share it now on its own, because I feel very strongly that if you want to know anything else about autism (or, at least about autism as I experience and process it), you have to know this.

                   “You need to know that from our very earliest attempts at communication, we are often told that our sensory and emotional expressions are wrong. We are told that cuddles are supposed to be pleasant, even if to us they are painful. We are told that busy, loud environments that hurt every part of our bodies and make us either run, curl up or lash out are “fun”. We are told that it’s important to look at people’s eyes when we talk to them, even if to us this is painful. We are told that the ways in which we do conversation are wrong. We are told that the ways in which we do friendships are wrong. We are told that our passions and enthusiasms are wrong. We are told that we are wrong.”

For me, if you are serious about understanding us and about helping us, you need to recognise that all of our doing and being is framed according to this experience – an experience that began with our very, very earliest attempts at self-expression and social communication and that can make it impossible to know who we are.

“Just be yourself” is hollow advice in these circumstances.

Most of this blog is actually about me trying to figure out what this experience means for me as an individual in the social world.

 

‘Kitchen Experiences’ – The Everyday Work of ‘Coming Out’ Autistic

I read a really interesting blog post the other day, about the role of employers in helping neurodiverse employees to ‘come out’ about their conditions in the workplace . (N.B. ‘neurodiverse’ is used in the blog as an ‘umbrella’ term for a wide range of neurological differences, including ADD/ADHD, dyslexia, dyspraxia … and autism.) The blog also deals  with the reasons for using the term ‘coming out’ to cover the process of disclosing disability.

The blog is here – definitely worth a look in my opinion.

What I want to do here is to add to that discussion, by explaining a conversation that I’ve had this morning – a very, very mundane, ‘everyday’ kind of conversation in my own house, but one that is so representative of hundreds of such conversations I’ve had over the years that I think it’s worthy of some comment here.

It was a conversation that unfolded in such a way that it created one of those moments where I was faced with the decision – ‘do I mention my autism here?’ – ‘do I want to ‘come out’ to this person, right here and now?’ And it happened like this:

A Kitchen Experience

We had visitors in the house – they were there in relation to my partner’s work, so they were people I know, but not well. I was making coffee, and one of the visitors was in the kitchen too. It became apparent that (in an inquisitive way) they wanted me to account for the fact that I was at home during the day, and not out at a 9-5 job. So the conversation came round to what I do for a job – and I talked about my PhD, and about previous and other related work, which has all been in fields associated with disability (and autism in particular).

And then the question comes … “So how did you get into that kind of work then?”

I’ve been asked that quite a lot. It’s a perfectly harmless question – at least I’m sure that’s how it’s meant. But there’s so much behind it. In that moment, I have to assess the risks and benefits of ‘coming out’ – because what I want to say in those moments is something like:

“Well, I’m actually autistic myself, and I’m absolutely passionately, obsessively, deeply committed to making the world a better place for other autistic people, because I know how the world can hurt us. And really, by extension, I care about finding out more about, and challenging all the other ways in which the world hurts people.”

I didn’t say that though. I gave some very dull comments (in a very expressionless voice, avoiding eye contact by looking at the coffee cups) about job opportunities that arose when I finished my undergrad – and implied that I fell into a field in which I was little more than intellectually curious.

And this raises three important questions for me:

Why, in that moment, in my own house, did I feel like I had to give that answer? 

I think that there are two main reasons why this happened – and it’s possible that they might seem contradictory (I’ve said before that if there’s one thing that autism is, it’s a bunch of contradictions).My aim here is not to try to present some unifying account of the situation, but to point out these contradictions as I experience them. So the two reasons that stand out most clearly to me as to why I wouldn’t ‘come out’ as autistic in that everyday encounter are as follows:

  1. Firstly – I’m aware that autism is stigmatised. I know that there are stereotypes about what we can and can’t do, and in my mind, if I give away my identity I run the risk that these stereotypes will be held against me in the future. Anything I say that is remotely unusual, any behaviour that deviates slightly from the ‘norm’, and I feel (I know from past experience) that this can be held against me. Anything that would be ‘a little bit strange’ or ‘assertive’ or even ‘rude’ becomes ‘autistic’ for me – and the difference is that ‘strange’ or ‘assertive’ or ‘rude’ are things that we DO. They’re not things that we ARE – so the label can be discarded (by avoiding similar behaviour in future) without any permanent negative effect on how people see you. Whereas, whatever I do can be interpreted by an autism ‘lens’ – through stereotypes and misunderstandings, and I can’t get away from it.
  2. Secondly – there’s work in coming out as autistic. It takes effort to find the right words for the specific situation. And I wouldn’t mind that work, but again it’s risky. Because if I get the words wrong, then I don’t do justice to my identity and I leave it open to being dismissed by whoever I’m talking to. This happened to me just the other week. I disclosed my diagnosis because the person I was speaking to mentioned that they knew someone else who ‘technically has Asperger syndrome.’ My comment of ‘me too’ was met with a long speech about how the person I was speaking to believes it is over-diagnosed and that everyone ‘can be a bit odd.’ Bearing in mind that many of us come to be diagnosed because the price of being understood as ‘a bit odd’ has nearly crushed us, it feels incredibly dangerous to put on the line for public dismissal the very identity that helps you to make sense of yourself and what you understand to be your limitations.

Why does this matter?

I’d like to say that I think first and foremost that it matters because in not disclosing that I am autistic – in not ‘coming out’ – I feel like I’m betraying my identity. I feel like I’m hiding part of myself that is quite important to me. And I also feel like I’m doing a disservice to other autistic people by colluding in the stigma.

I feel that if you’re in a minority, representation matters (though I don’t like that fact, and it’s one of the main things I think we need to challenge if we care about social change) – but I want to be ‘real’ and very open and proud about myself (and in a lot of situations I really am). And I feel that if I’m not open all the time it’s like I’m lying. That is why in this post I’m trying to very hard to articulate why I think it happens – the forces around me that make ‘coming out’ feel so risky (though also feeling guilty and sad because I’m feeling deep down that maybe it’s just personal weakness on my part that makes me keep quiet).

And what does this mean for employers and other who want to help us to be ‘out’?

Well, I think that if employers (or anyone else, in fact) are concerned with making it safe for us to ‘come out’ this needs a huge social shift. For me, it’s got to be about more than creating individual safe spaces in the workplace (though that is without doubt an admirable endeavour!) But the thing is, that in the example I’ve used here, I WAS in a safe space – I was in my own kitchen (there are few places in the world where I feel safer).

But in that moment of decision – to ‘come out’, or not to ‘come out’ – it’s about more than the immediate space.

  • What is weighing on me in that moment is all of the time as a teenager, trying to find words for my experiences, and my hurt – and not being understood because no one knew I was talking about autism.
  • Then all the effort of trying to ‘make my case’ for diagnosis – being told by my doctor that I couldn’t have Asperger syndrome because I don’t have a learning disability, being told by my psychologist that I’d ‘grow out’ of my diagnosis, because I’d learn strategies to cope.
  • And then all the previous times in everyday life where I’ve tried to ‘come out’ – and the conversation has become about ‘you’re not properly autistic’ or ‘oh but you’re so able’ or ‘so how exactly does autism affect you?” Or – and this is probably worse – times when mentioning my diagnosis has led to an increased need to prove myself and my abilities – and also that I’m not TOO passionate about autism, because it’s wrong to be a one-trick pony with an agenda (especially when everyone knows that obsessive interests are part of our pathology).
  • And of course, right there at the forefront of my mind, there’s leaving a job I cared about, with ‘Asperger syndrome’ written on my sick note.

So often, when people want to make a difference in autism, we aim our efforts at attempts to figure out big policy changes that we can make – or physical adaptations to the environment (the elusive one size fits all ‘autism-friendly environment), and we do this by attempting to generate specialist knowledge that can be applied in specific contexts (autism and employment, autism and healthcare, autism and education). We create specialist provision in universities – ‘Disability Services’ so that there’s somewhere for autistic people to go with their needs – separate from the social environment of academic space. And all of this definitely has its place – I’m glad people are thinking about those things. Some of them have helped me a bit in the past.

But this specialist knowledge, and the adaptations and policy changes that it seeks to generate are of little use in the distinctly non-specialist environment of my kitchen.

And likewise, those ‘kitchen experiences’ (and, as I have tried to stress, this is just one example of a very, very common thing) have a very deep and profound effect on how I manage in those created spaces (autism and employment, autism and health, autism and education). They weigh heavily on my mind when I am trying to decide whether to disclose and, if I do decide to disclose, how I frame the disclosure – how I construct my autistic identity in that place, and (as it’s usually phrased) how I answer questions about my needs.

And this becomes problematic – because it means that those everyday experiences (the ‘kitchen experiences’) are having an effect in the very places where people are trying to help, and we end up speaking different languages. The employer (the clinician, the teacher, the disability adviser) has worked very hard to understand autism, and they desperately want THEIR environment to be a SAFE environment, but the autistic employee (patient, student) has had so many ‘kitchen experiences’ that they frame their ‘coming out’, if they manage it at all, in a way that is ‘safe’ but not necessarily ‘real’.

In short – I’m so, so glad that people are talking about the role of employers in helping neurodiverse employees to ‘come out’ in the workplace, but (and I think that this also applies to those other contexts – hospitals, schools, universities) – if you really want to make safe spaces for us, you have to understand the everyday, the mundane, the non-specialist. You have to understand the ‘kitchen experiences’.