Fat shaming, gender roles, and becoming a woman with autism

Those of you who were diagnosed autistic as adults will probably understand when I say it takes a while to grow into the identity. There’s the tearing down, sudden or incremental, of the person you’ve built on lies of neurotypicality; the grief; the acceptance; and the beginnings of real life.

The process isn’t steady: it comes in fits and starts. Against a smooth background of progress, I encounter every so often those single jolts of realisation, “eureka” moments that seem like a physical leap forward from where I’ve been.

I’ve known for a long time that the images we see and the views we read in the media, online and on television, can have a strong influence on our unconscious biases. The constant bombardment of idealised female physiologies, the skewed representation of women towards youth and a specific body type, twists the self image of girls from early in childhood: that if they do not fit this trope, they are a failure. There are further, deeper issues around “thinspo” and “fitspo”: online media specifically designed to encourage disordered and self-damaging behaviours around eating and exercise. These issues are well covered in the more progressive online literature, as well as, ironically, by much of the same media that perpetuates the problem. But something I read recently cast this type of media message, for me, into a different frame.

The piece from Beauty Redefined, which very eloquently and sensitively explores the benefits of a “media fast”, doesn’t strictly cover anything I didn’t know. But it sets out the problem in a slightly different light. Instead of just telling me again that these messages towards women are wrong and harmful, it suggests tools I can use to choose which media messages are safe to consume. I was intrigued: it made me think. And considering those tools for a while brought home to me a new understanding on why being an autistic woman, in this world, can feel so dreadfully wrong.

The narrow, idealised pictures we see of women in the media aren’t just physical: they’re personal. The few roles available for women in books and films paint them as social creatures, valued by society for their prettiness, but also for their “traditional values” of kindness and sensitivity. They have many friends. They organise parties. They answer the telephone late at night and babysit their siblings’ children. When a friend is in trouble, they always know the right thing to say. The role of this comfortingly conventional woman is defined entirely by her interactions, not with the world, but with people: who she knows; who she supports; who she loves.

This picture of women painted by society as we know it is distorted enough from a neurotypical perspective. From an autistic one, it is almost unendurable. In my darkest moments it was to this impossible stereotype that I compared myself, doomed to failure and shame. To be autistic was to diverge from every part of the societally accepted female identity. A lifetime of niggling doubts had coalesced overnight into something monstrous; and I suddenly saw myself marked, judged all my life by something that everyone but me could see. My lack of social skills had me constantly labelled as aggressive; insensitive; uncaring; I’d learned not to listen, to try not to be hurt by what I could not understand. But now I knew of those people accusing me: that they were right, and I was so, so wrong. It didn’t matter that I didn’t feel or mean those things. It mattered how they saw me. How I looked.

When first I realised I had autism I forced myself to read on and on, no matter how much it hurt. I read about how I was different, how I was less, in order to learn to be more. Endless reams of well-meaning advice for the parents of young boys; myself described in such condescending terms, a million miles from where I had learned I should be. And it wasn’t just the popular media, by any means. There was autism psychology, emotional maturity and developmental trajectories: bald statements in print, coldly enumerating the skills I lacked at each level of my childhood and adolescence. The tone of pity – or not even pity, but pragmatic acceptance that people like me just need to be cared for and tolerated. Like we couldn’t ever have value as autonomous adults, or command respect as our own selves.

When I read about autism, even now, it makes me want to change. Sometimes that change is about learning and growing, but mostly it’s not. I don’t feel encouraged by what I read to reach out, to connect with others and learn new social skills. I feel obligated not to inflict my naivity on the world. I don’t feel eager to develop my appreciation of the wider picture: I feel ashamed of the narrowness of my focus. What I see written about us entreats a primarily non-autistic audience to tolerate and accept our limitations, but never to encourage, accommodate or seek out our strengths. It paints autism as an embarassment. It tells other people about me, that I am less. It tells me I’m not good enough the way I am.

But back then, when I was at my most vulnerable, I had to read; I had to learn to be a better person. If I didn’t read and absorb and accommodate the world’s expectations, it meant I was lazy. And worse than that, it meant I didn’t care about the people around me. I had to protect them from the horrible impacts of autism. From me.

The parallels between this thinking about personalities and the distorted body images encouraged by fitspo and thinspo are closer than a breath. What’s written about autism is meant for non-autistic people – as if we didn’t exist – with no regard to the damage it can do. Like thinspo, coverage of autism is all about looking a certain way for other people. It’s never about being and feeling a certain way, interacting with people authentically, as myself. Even the labels, conjoured by disordered thinking from these caricatures of reality, are aligned. “Lazy”, “selfish”, “undisciplined”? These are all traits that the body-shaming media silently attribute to “fat” people – and particularly fat women – by implication, for not trying hard enough not to be who they are. “I just feel sorry for them – think of [ how much healthier they’d be / how many more friends they’d have ] if they [ weren’t so fat / acted more normal ]?” Wrapped up in the guise of caring, people who just want you to be healthy, to be happy. Keeping your failures hidden from the world. Helping you to change who you are.

I don’t need to change who I am to be happy. I don’t need to become invisible to be loved.

I do need some support and accommodations at work. I need guidance to navigate office politics and clarification of what’s expected of me. I have a lot to learn about many things, for which I will need time and patience and acceptance, just like anyone else. But I don’t need the guilt. I don’t need to feel bad every time I ask a question, that I haven’t “developed the skills” to be completely autonomous. I don’t need to force myself through social interactions that drain the life out of me and give nothing in return. I don’t need to ration the supports I request for fear of being seen as lazy or undisciplined. I help other people with the things I’m good at, and they help me. I am not worthless because I think and socialise differently.

I’ve grown as a person since my diagnosis. I’m becoming more comfortable with this identity. But sometimes I still need reminding of the benefits of a media fast, to clear my mind and remind me who I am.

Serenity

“God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.”
(Reinhold Niebuhr)

In the small bedroom I slept in when visiting my grandmother’s house, at the foot of the bed, was a wooden panel inscribed with these words. Simply carved, decorated only with the raised image of a pair of hands, clasped in prayer. The simultaneous simplicity and depth of those few, short words has never failed to astound me.

I’ve been thinking a lot lately about what it means to be autistic, and to be me. Which parts of me are immutable, and cannot change? Which parts of me are not? And even if I could change those parts of myself, would I want to?

There are things about me that make other people uncomfortable. The way I speak. The tone of my voice. The way I use my hands. These things are different, alien, and open to misinterpretation, but they are not in themselves harmful.

The language of autism is not something I would ever wish to change. It is beautiful, emotional and expressive. It does not tend naturally to hide or manipulate. Rather than change myself, where I can, I seek to ensure that those I interact with regularly have the correct understanding of these mannerisms. Then I can express myself safely, comfortably and freely in my own language.

There are other parts of myself that I would seek to change. The defensive barrier that rises in response to constant anxiety. The ever-deepening need to protect myself from criticism, moving gradually from legitimate dismissal of unreasoned negativity, to refusal to accept any form of feedback that challenges my fragile self-esteem. The relentless erosion of ability to take risks, learn or grow for fear of destroying the tiny, brittle, frightened thing that I have somehow become.

In changing this part of myself – this figment, whittled down by fear – I need a strength that it does not have. But it is not the only part of me. My autism is my strength. I need to stand up for myself, to challenge the inevitable pressure to conform to a pattern that is not me. My autism can do this, and will not be ashamed. The power to fix myself is already inside me.

Looking back at those words tells me I am not broken. I know myself as I am now: accepting the parts of me that are mine and beautiful, and looking to change what I can. Things will not always be this way – couched in this quiet place where everything is clear. But for today, I am serene. I am courageous. And perhaps, if only in this, I am wise.

The calm between the storms

Mental health recovery is a funny thing. Sometimes I even wonder if it’s even a thing at all. Research on clinical depression shows it’s something that tends to recur, and anxiety will always be there. So maybe “recovery” isn’t the right word.

But regardless of terminology, there have definitely been some beautiful periods of my life where I have been neither anxious to a disordered level nor depressed. Whilst the descent tends to be slow, recovery can begin with startling suddenness. One day, out of the blue, I feel OK.

I’m very bad at recognising when I’m depressed. Unfortunately, CBT taught me to get better at that. I say “unfortunately”, because there is a level of self-protection in denial. If I don’t know I’m depressed, I don’t have to fight it. I can just get on with stuff. Ever more slowly, and with ever less interest, but it avoids the pain of actually acknowledging I’m sick – something that at that point, of course, just feels like one more thing on the endless list of things that I can’t deal with. The worst bit isn’t even knowing things are bad. It’s when you realise you genuinely can’t remember what it felt like to be OK.

When I’m starting to get better, it’s a positive spiral. Contrary to what your shrink may tell you, if you are autistic, chances are behavioural activation has f**k all to do with this. When my senses are already more sensitive to overload than usual, setting goals on doing more things and “connecting” with my peers tends not to improve either my mood or my energy levels! But when something finally does go right, it works like they tell you behavioural activation is supposed to.

There’s a storyline to getting better. It starts with being bored. Not that horrible empty feeling you have in depression, where you don’t want to do anything but you don’t want to do nothing either: just solid, healthy boredom. I’ll have got used to being depressed by that point, so my schedule will be skeletal, covering only the bare minimum of activity required to keep myself physically intact. But one sunny Saturday morning, I’ll get out of bed and think: I have nothing to do today. Well that sucks. Let’s do a thing!

I’ve done this enough times now to become passable at navigating the next stage, which involves doing ALL THE THINGS! Literally. I look at the schedule and realise how empty my life has become, at the same time as I’m remembering all the fun things I’ve missed. I’ll suddenly realise I want to start running more; and driving to choir; and visiting that exhibition that’s been on my list forever; and I can totally fit in a couple of social activities this week too … except that I can’t, of course, even though my brain is telling me how much it’s totally up for this! Having done this a couple of times, crashed and burned, I know now to start off a bit more slowly and build up to a full schedule.

But the next bit, regardless of caution or care, is where things can go off track. That first glorious rush of unicorns and rainbows, where you’re utterly ecstatic at the sheer unbelievable amount of energy available when you don’t have to spend it all dragging your arse out of bed in the morning, is winding down. You’ve fully realised just how bad a place you were in before, but you’ve got a handle on things now, and you’re feeling whole a lot better. You’ve settled into a routine where you’re happy and motivated – maybe even thinking about a challenge. And then something bad happens.

Words are inadequate to describe the horror of this moment. All of those bad feelings and negative thoughts that you’ve just shaken off come flooding back with the intensity of a pre-dawn nightmare – only you can’t wake up. You’ll never wake up. You’re terrified and not ready for this and it’s hopeless, because after just a taste of the life you almost didn’t remember you’ve been shoved right back to the hell you were in before. (You haven’t, of course, but right now it feels just the same.) You thought you’d finally escaped; but no. You thought you could do something fun, even something challenging – but as you’ve already found to your cost, when you don’t even know if you can rely on being able to feed yourself next week it’s just not practical to plan for anything more. The memory of the last episode is still fresh in your mind, and you’re exhausted just thinking about it. You don’t know if you can find the strength to dig yourself out again.

From there, it can go either way.

I am writing about this now because two weeks ago, this is where I was. Two weeks ago I drafted this piece, and two weeks ago I couldn’t post it, because I honestly didn’t know what was going to happen. I spent most of last year lurching from crisis to crisis, constantly on the brink of exhaustion, bouncing along a mental health gradient that was definitely positive but never quite got me to feeling fully human again. So I didn’t want to post something optimistic about recovery just before I sank.

Today I am OK. I took a break last week to get some perspective; now I’m clear-headed and angry and ready to fight. This isn’t about me being weak or useless (neither is depression, but it tells me both are true). The problem that burst on me with the force of a nightmare is not in my mind; and by its very nature, a “real” problem has a “real” solution. Soon I will be scared – scared of pushing too hard, scared of gas-lighting tactics, scared of being misunderstood – and I’ll convince myself that really my wellbeing isn’t that important after all. But not today.

Recovery isn’t about everything going well for me. It’s about having the strength and the self-belief I need to fight. And it lives nowhere more than in that calm before the storm, when I’ve got the firmest hold on what I’m fighting for.