Disconnect

Someone at work today asked how I was coping with the long nights. People are aware of my SAD. Offhand, I said I’d been OK up until about the last week or so, but I was getting a bit tired now. No big deal.

Then I thought for a minute about when time got away from me. Maybe it was a bit more than a week. Maybe two. Perhaps three.

I no longer have a sense of time.

I remember the moment I first felt panic that the minutes were slipping away. It was in the middle of a Saturday morning, on my way to the shops, when that afternoon I had somewhere to be. There was that horrible sinking feeling in my gut, chasing the hours that slid through my fingers, realising how completely I’d misjudged. I panicked. Rushed my shopping, called a taxi. Lost the taxi. Found the taxi moments before it pulled away, a breath away from being just one more no-show. Deep breaths, shaking, as we crawled through traffic on the interminable journey home.

I made my afternoon appointment, overloaded, but invisible. No one saw it: not for a moment; not the merest flicker. I passed, exquisitely. I paid with the Sunday. It wasn’t enough.

Three weeks ago.

In winter, I cannot cope with overload. In winter, I do not have the capacity to recover myself. There is not enough daylight, and not enough time. I cannot expose myself to the risk of uncertainty; I cannot allow myself to panic. I must be slow, quiet, centred. I must be calm.

On that Monday morning I went into survival mode. The plan had already lost the non-essentials several weeks before. But this was the morning when I drew a breath, and relaxed. I forced myself to slow down, to breathe. Not to stop, but to keep moving, no matter how slow. Don’t fight it; just be. It didn’t matter if I was late. It didn’t matter if I didn’t show. Nothing mattered, but to be calm. To keep moving. One step at a time.

It’s a curious feeling, to be centred in the eye of the storm. I am slow, while the world spins. I am quiet, while the world screams. I am; and somehow, strangely, the world is not. Steadily, methodically, I move through this madness without feeling. I am calm. I do not connect. Displaced from reality, I am serene.

I do not want. I do not feel. I am not hungry or thirsty. At night I wait passively for sleep that takes hours to come. The choice to begin each day is one I no longer allow myself to make; for if I allowed myself that choice, then I would choose wrong. I know this, without feeling sadness. I feel only the weight of my self as I sleepwalk, dreamlike, through the wild cold winter. I still know that the winter will end. I still remember what it was like to live.

I do not stop. I must not stop. Until it ends.

One step at a time.

Are you afraid of the dark?

This time of year can mess with my mind! Sometimes it’s exhaustion, sometimes depression. At the moment, apparently, I’m a child again – the idealised version: happy and eager, with the sort of “can do” attitude that comes from having no concept of limits. But as a child, I was afraid of the dark.

It’s strange, coming home in the night time. Turning off the main road and into my quiet side street, where the street lamps don’t work and the darkness looms like a yawning cave. Some of the houses have outdoor lights that switch on and off as I walk past.

Unlocking the front door, I turn on the lights. The house is silent.

I go inside. Flick the switch in every room. The dim brightness of artificial light is eerie in the empty quiet. There’s a funny feeling in the pit of my stomach. I switch on the radio to drown out the silence.

6 pm. It’s early, but the darkness says it’s late. I cook, eating dinner to the sound of the radio, the stove cooling noisily in the background. Closed blinds keep out the night.

7:30. I curl up on the sofa, watching TV. I’d like to read, but that would mean going back to the silence. Why is it this cold stillness, so welcome in the daytime, seems so threatening at night? I turn up the volume to fill the empty darkness.

11 pm. Lying in bed, I stare blankly up at the ceiling. Moonlight streams in through thin curtains. Wrapped warm under weighty covers, comfortable, I drift towards sleep.

Moving lights; and a shadow rises, suddenly, from beside the bed. I jolt awake, heart pounding. Focus. Switch on the bedroom light.

Of course, there’s nothing there. I hear the neighbours’ car, pulling slowly into their driveway.

I know it’s ridiculous. I go to sleep with the lights on.

When good (wo)men do nothing

“I’d never know if they were autistic or just being rude”.

To the person who said this to me, from a position of power, as an excuse for not putting into practise anything they’d learned: here is what I wish I’d been able to convey at the time.

As an initial aside: yes, you could know. They might even actually tell you; but otherwise, you’d just have to make an effort. Not unlike the effort I make with non-autistic people, every single day. If you’re needing some ideas: how about judging that person on what they’re trying to do, rather than how they “look” in the moment or the exact words that they say? You could try questioning those immediate, intuitive conclusions you jump to and ask yourself: did they really say what I’m reacting to, or did I interpolate that into the space between their lines? You could step back for a moment and consider: is it possible that what they said just now isn’t actually about me? Could I, perhaps, be reading too much into this? Should I be taking this so personally? I know that kind of thinking isn’t easy – it does take a bit of patience, and you might have to practise a few times before you get it right. But you can do it, if you try.

But what I really wanted to tell you is that your attitude, right there, is the reason that people like me need medication. It’s the reason we’re underemployed. It’s the reason we feel valueless, despite our unique skills. It’s the reason so many of us are driven to suicide.

Let’s think for a moment about what you just said. Your words said:

  • It’s more important for me, from my position of power, to judge, than it is for you and people like you to be treated fairly
  • I need to be able to label people as “rude” more than you need to be able to communicate
  • Upholding my neurotypical standards as the default in every interaction is important enough to justify ostracising anyone who cannot achieve them

And behind those words, in context – even as an autistic who struggles with implications – you’ve told me a whole lot more. You’ve told me that despite what you’ve learned about adult diagnosis rates and the stigma of disclosure, you still won’t treat anyone without an openly declared official diagnosis with anything other than prejudiced contempt. You’ve told me that you’ll continue to judge everyone according to those unwritten neurotypical “rules”, regardless of their ability or the impact of your judgements. Better that, after all, than to let someone “get away with” being “rude” to you. You’ve told me that in your “normal” social sphere, everyone is guilty until proven innocent.

One of the reasons I didn’t say anything at the time was because I know, deep down, that there is nothing I can do to change your mind. I know you know the facts – we went to the same training course on autism. I know that you went of your own volition, because you were interested in learning more. And yet I see that interest is skin deep for you: purely, trivially academic. You do not see that there are people in your world, like me, for whom this is a lived reality. You will not acknowledge that those affected by these issues are living and working invisibly, close beside you. And so you are incapable of putting the facts you’ve learned towards changing your behaviour or challenging your prejudices, to make us invisible people that tiny bit safer in an inhospitable world.

You are not the first. Nor will you be the last. Your attitude is as endemic as it is poisonous. People like you are the reason so many autistics suffer from anxiety; from depression; even from PTSD. Nice people; good people; decent people; who nonetheless ruthlessly perpetuate suffering by their quickness to judge and unwillingness to learn. Suffering that is all the more criminal for being so easily avoidable.

Someone once said, “the only thing necessary for evil to triumph is for good men to do nothing”. You heard the facts, you followed the implications, and you did nothing. You are complicit in this evil. You are responsible. You.

Can we really be Disability Confident?

I’ve recently come across this scheme which the government is promoting to make businesses more “Disability Confident”. On the fact of it, and in fact to a certain depth, this is enormously positive. The webpages are not a gimmick: they state in clear language the benefits to the employer of having good disability related policies to employ and retain disabled staff, supported by facts and figures. In particular they emphasise the frequency with which this actually means retaining skilled staff who become disabled during their working lives. This is a huge selling point for employers, for whom recruitment of skilled workers can be an enormous expense.

There are three levels to the Disability Confident scheme: an employer can be committed, Disability Confident, or a Disability Confident Leader. The documentation is clear on what should be done at each stage to achieve and maintain the label of Disability Confident. The principles set out, in that they make good sense to me as a disabled person, are frankly above and beyond what I have come to expect from British culture today! If this means what it has the potential to mean, that we might be moving forward as a country from the Autism Act 2009, through the Equality Act 2010, to progressively stronger guidance and legislation to protect and support disabled people, it would give me real hope for my future. The kind of hope I haven’t seen since beginning to pursue a diagnosis, almost two years ago.

There’s only one thing that worries me about this scheme, and that’s the phrase “self-assessment”.

In the level 1 documentation, on becoming “committed” to Disability Confidence, only once is it suggested that disabled people should be part of the assessment process: to test that the employer’s interview process is accessible. The second level, of actually being Disability Confident, adds the requirement to “[value] and [listen] to feedback from disabled staff”, including taking appropriate follow up action. Things like “making reasonable adjustments” and “promoting a culture … where your employees feel safe to disclose” are positive statements of actions that a business can take in making itself a safe and secure environment for disabled people. The level 2 documentation, if adhered to, describes an environment in which I personally would feel valued, confident, and encouraged to work hard towards achieving my full potential. It’s all there. But it’s not until level 3, a “Disability Confident Leader”, that the employer’s culture and environment is subjected to any serious assessment by actual disabled people.

There are plenty of people I know – otherwise hardworking and decent people – who are nonetheless thoughtless and occasionally discriminatory on the grounds of disability. It is difficult, when the lived experience of disability is so different, and particularly in a culture that infantalises and persists in speaking for and over this “lesser” group, to learn to appreciate the perspective of a disabled friend or colleague. It is hard for non-disabled people to realise the urgency of “reasonable adjustments”, or the stark reality that not only is there such a word as “can’t”, but there are people they work with who are forced up against that “can’t” every single day of their lives. Until you know that – until you have felt it, through thoughtful empathy or lived experience – it is impossible to appreciate how demoralising that can be.

So I wonder how much, through self-assessment alone, this Disability Confident scheme will be able to achieve towards improving the experience of disabled people in the workplace today?

For any employers out there considering the Disability Confident accreditation, as a disabled person fully committed to the wellbeing of my own organisation, I would highly commend it to you. But I would encourage you also to ask some hard questions of yourselves that are perhaps not stressed enough in the documentation. I would ask you to engage actively with disabled individuals and any disabled communities within your organisation. Ask them what they need to do their jobs well. Ask them how easy it is to get reasonable adjustments, and to be fully confident that agreed supports will be in place when they need them. Ask them anonymously, and be prepared to hear their honest answers.

Because the truth is that, even with the best will in the world, you may not yet be Disability Confident. And if you want to become so, you will need to ask yourselves hard questions about the past. When a deaf employee requested an external palentypist, and you had to refuse because some information was “commercial in confidence”, did you take the time to explore possible alternatives? When a dyslexic employee asked for notes to be taken in meetings, because he struggles to parse verbal instructions, did you tell him that was just too much of an admin overhead? Did you consider the impact on the disabled employee: which parts of their job would become more difficult or even impossible to do without these supports? In the future, what would you like to change?

Disability Confident is a hugely positive step in a culture that undervalues disabled people and the work they do. But self-assessment, where any organisation can blithely state that they are already Disability Confident, is not enough. To become safe and secure places where disabled people can work and thrive, many employers will have to recognise harsh truths around where their processes are not currently working. An essential part of the process of becoming Disability Confident is inviting honest input from disabled employees, accepting criticism with humility, and being willing to change.

In the future, I look forward with hope to the example set by Disability Confident Leaders, and their efforts to make the working world safe and accessible for us all.

Scenes from childhood

Like many on the spectrum, I was not a happy child. Having supportive and loving parents, I was luckier than some. And I have seen some photos of me, as a very young child, smiling. But my abiding memory of the camera was always the gentle encouragement to stop frowning, to look happy. I was rarely happy.

My primary school years were a particular trial for me. Infant school is peppered with memories of solitary play, of watching from the corner of the playground or imagining wild jungle scenarios in my own little world. Quiet, strange, a little lonely, but mostly harmless. But in junior school, surrounded by peers becoming more and more aware of the social world, my strangeness could no longer pass unnoticed. Articulate on paper but slower in words, I was bullied mercilessly: first by older children, and then by my peers. The saying, oft quoted by my parents, that “words can never hurt me” provided no comfort. Sticks and stones I could have dealt with – those I could learn to fight – but somehow I could never get to grips with words. I remember my mother hugging me, telling me I had to try to be less sensitive: don’t let them see they’re hurting you and they’ll go away. I couldn’t hide it.

I was around 10 when I realised I could hit people to get them to stop. I learned it by accident one day: overwhelmed with the rage and shame of constant public humiliation, I just lashed out. This, I later found, was particularly effective against girls. Since I’d had a growth spurt by this point and was one of the tallest in my class, the verbal bullying I’d been defending myself against carried little weight with teachers faced with a cute little sobbing blonde pleading I’d hit her. But it was the only way to make them stop.

I don’t like to think about where this path would have taken me. Thankfully, my secondary school was focused on academic achievement and had an excellent anti-bullying culture. Having flared up a couple of times, and been met by peer behaviour of surprising emotional intelligence, the brutal lessons of junior school were quickly scrubbed out. But it’s sobering to realise the full impacts of being in an unsafe environment. However strong you are, eventually all you are left with is how to survive.

The lessons of childhood have a strange habit of popping up again in adult life. It’s easy to get cocky, thinking you’ve outgrown the vulnerability that pushed you to anger and violence. I thought that chapter of my life was over. I was wrong.

These past few months, I’ve been in a terrible place. From what is now a safer space, with hindsight, I can’t describe it as workplace bullying. But even though there was no conscious intent, the actions of this person and their treatment of me had pushed me into a place of desperate terror. Held ransom to social and communication abilities I did not have, there was nothing I could do to take control of my situation. Whatever I did, I couldn’t win.

As the months dragged on I grew to hate what I’d been turning into. I’d regressed into that space of desperation: of lashing out at the tiniest thing, seeing every challenge as a threat. On the surface I kept fighting patiently for support, trying not to scream the urgency while my self-care and home management abilities crumbled. But the constant performance took its toll. Work became the subject of my nightmares. With the threat of retaliation for autistic behaviours always poised over my head, fuelling the very distress that makes those attributes more difficult to mask, my position was precariously unstable. I felt – I was – unsafe. And all of the unhealthy attitudes and mechanisms I’d used as a child came back in full force. The positive lessons of my adolescence protected me in part: I didn’t hit, I didn’t shout. But I couldn’t sit still. I paced in meetings. I couldn’t make eye contact when the bully was in the room. I physically shook with adrenaline, with the effort of suppressing my anger and fear.

It’s been a few weeks now since the situation was diffused. This person and I no longer work closely together, and my line manager has been wonderful in helping me get back into a healthy routine. I’m no longer pacing and shaking in meetings. Things are settling down.

I’d like to say I’ve learned since I was 11 years old. And I have: I’ve learned many things. I’ve learned the importance of trusting my own lived experiences over the voices of authority. I’ve learned that nothing can be taken for granted. I’ve learned that patience through pain is the only way to get what you need. And the most powerful positive lesson of all: I’ve now learned that eventually, patience can work. Experiencing the outcome of patience and perseverence can only feed my confidence in pushing for future outcomes.

But I haven’t learned how not to be a monster in between.

Compassion, I think, is the main thing to take away from all of this. A deep understanding that behaviour and attitudes, of myself and of others, are often much less about the person and more about the environment they’re living in. A hostile environment makes monsters of us all.

Interpreting signals

One of the things I’ve observed about myself and other autistic people I know is that we’re not good at listening to our own needs. This is generally recognised as an autistic trait, but whether it’s completely inherent or partially learned is an interesting question.

On the “nature” side of the argument it’s clear that the ability to hyper-focus on a single topic – a talent shared by many on the spectrum – could interfere with the ability to process other signals. Descriptions of this trait are often framed in terms of a deficiency in social skills, manifesting as a resolute unresponsiveness of the autist to other people around them; but those willing to alter their perspective might note that the unresponsiveness is to almost any disturbance, and not just that which would usually prompt a social interaction.

But there are environmental factors too. The trouble with having fundamentally different self-care needs is that throughout our formative years, we, like all children, learn from other people. It’s a rare and incredible individual who can develop an understanding of their own needs and act on them effectively when constantly contradicted – implicitly or explicitly – by the rest of the world.

So it’s possible this lack of self-awareness is an autistic trait, or that it’s psychologically ingrained through years of learning that our needs can’t possibly be what we think. Or probably both. Whatever the reasons, I certainly have difficulty with this. It’s often hard for me to interpret the signals my body gives me to determine what it needs.

The most obvious way this shows itself is in how I respond – or rather, don’t respond – to the onset of fatigue. This wonderful ability to hyper-focus on the best things in life interferes not only with external signals, but with internal. The stereotype of the “mad scientist” who forgets to eat or sleep seems entirely plausible when you regularly “wake up” from deep focus to realise it’s 10 pm, you haven’t eaten yet and you REALLY REALLY REALLY NEED TO PEE.

The difficulty of ignoring or not recognising internal signals manifests in a variety of other contexts. My response to pain, for example. I’ve learned over the years that I’m probably hypersensitive to pain; but knowing this has led me to ignore certain signals that, with hindsight, I should have listened to. It takes me a few times running on a strained muscle before I’ll believe the thing is actually an injury that needs rest, rather than my body just making a fuss about nothing.

Yet another one for me is hunger. I have an enormous amount of trouble distinguishing between hunger and fatigue. When struggling with depression, I’ve curled up exhausted in my armchair of an evening with no energy to move, read or even cry – not realising the crucial point that, having taken no interest in my lunch or afternoon snack, my mood will lift exponentially if I could just get up and cook some food! But even at better times, I can often only tell by experimentation whether I’m actually hungry or if I need to zone out for a while.

A really annoying thing about hunger is when it strikes out of the blue. One minute everything’s fine, the next I’m shaking and weak, my stomach completely hollow. The feeling is absolute, immediate and all-consuming, such that I’ll stop whatever I’m doing as soon as humanly possible to look for food. Chatting with an autistic friend I wondered aloud why more people don’t act so driven when hungry. He postulated that perhaps their bodies are better at giving subtle signals, allowing them more time to act, before the need is urgent. My pragmatic solution these days is always to have a snack in my bag with me, just in case.

Mental fatigue is actually the one that causes me the most difficulty in everyday life. It’s really good to be able to focus intensely on my job, but work life doesn’t leave me much in reserve. Although there are times when I struggle to get focused on a task, in my first couple of years as a scientist I would regularly find myself absorbed until an hour or two later than I should have left the office. It wasn’t until I was completely exhausted that I’d “wake up”, suddenly, to realise I had barely the energy needed to get myself home. Once home and fed, with no down-time to recharge before bed, the next day would be a hazy blur of mental exhaustion. If I overstayed my hours on a Monday, it wasn’t uncommon to lose the rest of the week. In the end the only way I could break the cycle was to set an alarm on my phone, to distract my attention at the end of the working day.

And the flip side of mental fatigue, of course, is self-discipline – or at least, the appearance thereof. Although my focus, once established, is pretty much unbreakable, to achieve that state in an office full of people can be tortuous, and is often impossible. The level of effort needed to sustain these failing efforts is far above that which neurotypical people exert. But unfortunately, it’s often the number of hours spent at the desk rather than the actual work achieved which matters day-to-day.

Of course, these are just surface issues. I could spend many pages on the long term mental and physical health impacts of self-neglect. But that’s not where I am today🙂

On the whole, I don’t really want to fix this. I’m happy with my hyper-focus. I do my best, most satisfying work when I’m fully absorbed, and not distracted by what my body needs! But it’s important for me to achieve a balance, maintaining my health and wellbeing enough so that I don’t crash and burn, and can continue to focus on doing what I love over the longer term.

Mental health blog

I think this blog may be standing in for a while as a way for me to monitor my own mental state. Which when I am stressed / overloaded / depressed, and thus not fully assimilating more than a fraction of my experiences, is difficult to do. So apologies to my readers if this is not your cup of tea.

Because today I feel like shit.

I mean seriously. The pressure at work is unrelenting. The social demands – probably laughably benign from a non-autistic perspective – are confusing and they are constant. Usually my job is well suited to quiet focus and isolation, but now is an exception. The merciless expectation, drilled into me through every interaction to perform, perform, PERFORM; at the same time as delivering all of a million things in none of the time. Keeping track of the million things when I can’t parse words and everything has to be checked six times. My colour-coded “to do” list is not up to this. I am exhausted by lunchtime; every lunchtime. I cried through two separate meetings today.

I can still just about cope outside of work. One long (alcoholic) drink and at least a quarter jar of Nutella down and I feel better. I mean, more relaxed. The thing is, I won’t get anything done tonight. There is ironing that can technically wait, but shouldn’t. There is music practice, which can’t wait, so won’t happen. There is an ever-increasing list of actually urgent things shuffling forward to Saturday, when I should be resting, or maybe putting some out-of-work time into workplace things. Things that at some point, on a day like today, I will have to do.

Some day, in a week, or two weeks from now, I will break down. I will curl up on my sofa and sob. I will have crossed the line from rationing non-essentials like ironing and music practice, into food, or sleep, or rest. There will be no time to take care of myself as I struggle to perform the basics, ever more slowly, in the waking hours available.

This year, I am afraid of that time. I fear it because of how it feels, for me. But I fear it also because I can’t hide. This year I can’t draw in and focus on my work, avoiding the pressure of interactions with such high expectations. This year I am expected to smile and learn; to be positive; to have energy throughout. And already, I can’t.

I am afraid of the exposure. I am afraid of the shame. I am afraid of negative consequences from not being able to hide. I am afraid of taking time off work or failing at other commitments. I am afraid of forgetting what it feels like to be OK. Again.

Autumn is here

This time of year is usually difficult for me. Often SAD comes on gradually. Sometimes it’s sudden. Usually it’s both.

I noticed I was starting to get tired at the beginning of the month. I’d known it was coming; it didn’t seem so bad. Maybe the weather changed; maybe it was just more people around at work, back from their summer holidays, more admin and communications draining my resources just that tiny little bit more than usual. It’s always justifiable, always reasonable, in the beginning. Whatever it was, quite suddenly, the demands of every day left me flagging, unexpected struggling to navigate the familiar walk back home. So I rearranged my schedule, putting the chores back to the weekends, then concentrated on enjoying my evenings and got on with life as usual.

Now I’m sitting here and feeling tired, so dead tired, but not wanting to sleep. Now I’m planning the days ahead in the knowledge of not be able to function except on weekends, and maybe not even then. And suddenly nothing difficult can be done with less than two weeks notice. Life contracts to form a new, smaller normal.

It’s all of the little things, and the big. Things are stressful at work and I’m struggling to access support. I have a running injury; so the let-out for all of my everyday frustrations, that quiet time in the middle of the day to relax and recharge, is gone. I feel slow and tired, all the time. It’s hard to concentrate, to organise my tasks and focus on what I should do. I’m not sad. But I don’t want to do anything. I don’t want anything. Gradually, suddenly, autumn has crept up on me again.

Every year comes round again, every year the same; but different. Last year was different. This year is different. Last year I coped by reducing external pressures and focusing on things that made me happy. This year the pressure is unrelenting. But this year I have support from mental health services that I’ve never had before. This year I have an employment support coordinator to help me navigate my professional nightmares. This year I have a counsellor who knows I have a history, who won’t just drop me the instant I’m sub-clinical by GAD-7 or PHQ-9. This year, however isolated I might feel, crying at my desk at work, I’m not alone.

Maybe this time, things will be different.

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.

Perilous meetings, part 3: is there another way?

I have to admit, I’ve been putting off writing this post for a while. As in, months. Maybe more. I don’t like to write about things until my understanding is complete. Perfectionism is a problem for me.

Sometimes in life, you can know you don’t have all the information, but you have to act on it anyway. Time doesn’t stop for me to make sense of what I’m doing. I am acting on this understanding now, incomplete or immature as it may be. So I will try not to be ashamed of sharing it with you.

The last two posts I’ve written were about the dangers of workplace meetings, and the methods I use to determine whether it’s worth the risk. Today’s post takes a more positive stance, asking: what’s good about meetings, and can I reap any of those benefits elsewhere?

And that quickly, I am out of my depth!

From my analytical standpoint I think there are two main reasons why meetings are, in principle, a good thing. Firstly, and quite simply, information exchange. A lot of things can be discussed in emails or reported in briefings, but neither of these quite matches the immediate efficiency of reciprocal conversation. My difficulties with speech are quite subtle – enough that I will be blamed for my “inappropriate word choice” as harshly as if the intention were to offend – and although I’ve thought about script cards I can’t quite bring myself to use them, for fear of being told I’m over-dramatising. So verbal, in person conversation does fill a unique niche for me – as for many people – that is very difficult to replace.

The other reason is really a variety of reasons, clustered weakly under a heading I could perhaps designate as “connection”. The very act of being visibly present and participating in discussions creates ripples: subtle effects on the interpersonal relationships of those involved. The nebulous concepts of approachability and trust seem to hinge on the contents of these reciprocal interactions. It’s about “staying in touch”, “maintaining an open dialogue”. If I were feeling cynical and utterly unsympathetic to human foibles, I might say it’s about reminding people you exist. But it’s an unfortunate reality that if you, like me, avoid group coffee breaks and water cooler small talk, you may find the only remaining option for connection hinges on an effective presence in team meetings.

Intellectually, I can see how it might be possible to achieve things in unstructured meetings. From what I’ve observed of social interactions, neurotypical people can and do select the focus, progress discussions and make firm decisions in conversation that they then act upon. But my experience as an autistic person is that I can’t do that. Not in social settings, and not in work meetings. I just can’t keep track. So I need to find another way.

There are a number of things I do at work to try to fill the gaps that “risk management” can create. Some of these are relatively easy. I keep on top of my emails and the news on our Intranet. If there’s something I’m aware of that I can’t find information on, I’ll email someone to find out more. Wherever possible I stay ahead of changes in policy or procedures by looking up the written documentation. I also have regular chats with my line manager, where I ask explicitly for updates on anything that might affect my work or job role. Such a proactive approach may seem like overkill, but it helps me to see straight away where I might need more information, and to avoid any unpleasant surprises.

But for reciprocal interactions, one-on-one meetings have been a complete revelation. I wrote about when I first discovered this, and have done my best since then to build on that insight. Now I keep up with some colleagues and contacts through coffee breaks, where I can practise handling the flow of conversation between work projects and outside interests. And while I can’t be completely confident in the attribution, I am starting to see a difference in how often those colleagues approach me, and the level of trust they show in my technical judgement. We’re working better together since I started experimenting with this form of connection.

Of course, one-on-one meetings can’t cover everything, and there are times when it really is essential to have everyone in the same room. I’ve noticed that people – including myself, when sufficiently relaxed – sometimes need the context of a wider conversation to bring the right thought to mind. And it’s not uncommon that, while one person might have most of the pieces to one particular puzzle, the different pieces others bring mean that sometimes you don’t quite know how the picture will look until everyone has had their say. Most of my team work quite independently on our projects, so it’s usually possible to slot extra pieces one by one into an already clear picture, but it doesn’t always happen that way.

These meetings are as risky and difficult to deal with as any other. But I find that by pacing myself, being aware of meeting goals and avoiding less constructive group settings, I can save myself to contribute more effectively to these essential interactions.

I’d like to say I’ve got the balance right, and it’s certainly true that I’m seeing improvements; but this is very much a work in progress. Recently workplace meetings have got harder and harder for me. Although there are many good reasons for this, it’s tricky to break out of the spiral of low confidence repeated “failures” can bring. The final piece of the puzzle, ironically, may be to ask for help from other members of my team. I’m not quite there yet, but I think I’m moving in the right direction! Until then I’ll keep pacing myself: building trust through one-to-ones, avoiding risky situations, and saving myself for those larger workshops where there really is no other way.

Baby steps 🙂