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 🙂

Perilous meetings, part 2: to go or not to go?

In my last post I talked about how meetings can be very uncomfortable, ineffective, and even dangerous for people on the spectrum. But in a culture where a lot of useful information is spread through meetings and discussions, there are obvious downsides to systematic avoidance. So what to do?

For me, the question of whether or not to attend a meeting requires clear assessment of risk. I weigh up the costs and benefits on a case-by-case basis to make my decision. I might also consider potential workarounds. I suspect this sort of systematic process is quite common in the higher levels of management and leadership, where individuals have learned through experience that time is the most precious of resources. What’s interesting my analysis is, ironically, the abstract and subjective nature of the costs involved.

The first question I ask myself on receiving a meeting invite – and one I’m proud to share with the most successful leaders and managers – is “why”? What is this meeting trying to achieve; and can I contribute to that aim? Is there any other reason for me to be there? If not, I – we – politely decline.

After the initial “why” filter, the second stage is where our methods diverge. Where leaders base this part of the decision on the value of their time – a concrete, measurable cost – my analysis must, by necessity, be more subjective. Of course, I do try my absolute best to make it as quantitative as possible!

The “workplace meetings risk matrix” works for me like any other. The likelihood of something going wrong (usually around someone else being affronted) depends on a few things: how important the meeting is to me, how complex the information I’d like to obtain or contribute, and my background anxiety level. It’s also related to who will be at the meeting. While most of my colleagues are constructive, there are a couple who raise red flags for me. The overall number of people can also be important: up to a point (where the “meeting” becomes a “briefing”), more people means more complexity, with a higher risk of losing track.

The impact of any problem that occurs relates primarily to who will be at the meeting: whether they’ve had any autism-related training, and their likely reaction to a perceived affront. In some cases, there can be also be much more serious risks to business reputation – although this is very rarely a part of my role. But if I don’t know any person attending, I have to assume the worst. So if I’m struggling to mask that day and the meeting involves an external visitor, I have to say “no”.

The third stage, maybe slightly less intuitively, is to assess the risk of not going. It’s easy when anxiety is running high to avoid every interaction that isn’t strictly essential. But there’s a risk in doing that too often: it damages my reputation, and can isolate me from my team and from the information I need to work effectively. So I look at the benefits again, and weigh up the costs of not realising those benefits. I also think at this point about whether there’s any other way of achieving some or all of those benefits – which is a topic for another post.

I won’t pretend this method is fool-proof. Sometimes I’ve judged a situation wrongly, or discounted an individual effect. And sometimes there just isn’t a right answer. But if I follow the process, overall, I can get a pretty effective balance.

Having run through the “meetings risk matrix”, there are two more areas I want to explore around dealing positively with workplace interactions. In my next post I’ll consider the multiple benefits that meetings achieve for non-autistic people, and suggest some alternative methods I’ve used to pursue those goals.

But it’s also important not to neglect the emotional impact of this type of thinking, which can easily descend into self-flagellation, depression and despair. So I want to take a moment to be clear that it is not us as autistic people who are inherently risks or liabilities. We can be aware, but we cannot take responsibility for the irrational judgements of others; and we should not try. It takes courage to accept that others’ thinking, however wrong, cannot easily be changed, and strength to work within the narrow boundaries of those misconceptions. I’ll tackle this in more detail in a later post. But I want to finish by saying that despite our difficulties, I don’t believe for one second that my autism, or yours, is a weakness. We are strong. We work hard. And we can succeed.

The perils of workplace meetings

The statistics for autistic adults in employment in the UK are bleak. Despite the similarity in distribution of intelligences on and off the spectrum, a mere 15% of adults with autism are in full time paid employment, compared to around a 75% employment rate for the total population of the UK. This factor of five difference in employability is widely attributed to the difficulties autistic people have, not with work itself, but with the social and political expectations of the workplace. I suspect that executive function and time management / perception issues may also play a role here. But in the socio-political arena, not least of the pitfalls awaiting us is the workplace meeting.

The issue of workplace meetings is huge for me, and much too large to deal with in one post! I’ll make a start here by sketching out the intricate, inconvenient little details that add up to explain why meetings can be such a tricky environment for autistic people – and the equally intricate little workarounds I use to chip away at the problem.

Meetings can be difficult for a variety of reasons. First, verbal dialogue. Some autistics (including me) have difficulty with short term memory, and struggle to hold verbal information in mind. This is a characteristic we share with others in the neurodiverse community, notably dyslexics. In offices with a culture of unstructured meetings, often lacking an agenda or minuted actions, it is easy for us to miss or misunderstand what is going on and what we are required to do.

Secondly, processing speed. The nature of conversation is to flow, sometimes rapidly, from one person and one topic to the next. Many of us on the spectrum need time to assimilate and consider the facts as they come in. Again, particularly in unstructured meetings, I often find my responses or questions arise too late, when the group has moved on to another thing. If I interrupt then, I disrupt the conversation; but if I don’t, I cannot contribute, and decisions are made without me.

Thirdly, when and how to speak. This is an area of immediate risk – for me, at least. It’s well recognised that the natural language of autistics is literal and direct, and that many of us don’t automatically modulate our vocal tone. To speak up quickly and avoid missing what is often the only opportunity – after insufficient processing time and with the anxiety of not completely assimilating the verbal dialogue – is to risk accusations of rudeness, insensitivity or disrespect. But not speaking carries the more insidious risk: of not understanding, not executing the correct actions, and ultimately of losing trust and underperforming professionally. Not forgetting that remaining silent prevents us from making our own, valuable contributions to these conversations.

I decided some time ago to choose the immediate risk of speaking in meetings. Accumulating experience, I began to recognise that my insights and experience could be important, even crucial to success. I’ve come to understand and believe very strongly that everyone on the team has something to contribute toward improving our products and processes; and that by not contributing myself, I would not be fulfilling one of the key responsibilities of my role.

Having said that: on a daily basis, maintaining confidence in meetings is one of the most difficult things I ever have to do. My style of communication is quite direct, honest and upfront, and I don’t hesitate to ask questions if unclear. The combination of being young and relatively intelligent, and of outwardly taking people at face value rather than on reputation, leads certain individuals to interpret this as a personal affront. (I suspect the fact that I am also female only compounds this issue, given the jarring disconnect between the stereotypical submissive young woman and the competent, questioning scientist that I like to project.) There is always the risk, therefore, especially in meetings with particularly well-established or tender egos, that I will be judged on the lack of soft edges in these interactions rather than the content of my message. Having confidence misinterpreted as arrogance and straightforwardness as lack of respect causes the sort of unquantifiable damage that can lead to the end of a career. So there is always pressure, and there is always fear.

There are a few tricks I can use to reduce the risk of workplace meetings. I have an agreement with my manager to get an agenda or “goal statement” in advance of each meeting, to help me follow the changes in topic. If I need to, I can ask for actions to be summarised in writing, at the end of or after the meeting. But it’s rarely enough to deal with the issues of tone and “word choice” – using the straightforward language that comes naturally to me.

I’ve had to accept, reluctantly, that the likely prognosis for any given meeting I’m invited to will be negative. But there are methods I can use to swing those odds back in my favour. In later posts I’ll describe parts of the wider, strategic approach I’m using to navigate the meeting culture in my organisation, and the benefits I’m starting to see in my performance and wellbeing over the longer term.

Nice people

I’m struck sometimes by the cognitive dissonance there seems to be in the heads of a very specific breed of “nice people”. Nice people know how you feel. Nice people sympathise with you. Nice people make soothing noises when you break down and cry, and tell you that everything is going to be OK. But tomorrow those nice people will do sweet F.A. to make it so.

Nice people, you see, don’t need to change. Their sympathy is enough. They know how good they are with people – they’ve been told so all their lives. They couldn’t possibly be part of the problem.

The problem with these “nice people” is their pride. Whether or not unconsciously, they are proud of being nice. Their natural way of being makes others feel comfortable. It’s a role they know from heroes in stories and leaders in films, the aspiration of many. They share others’ pleasure and soothe their pain; and they draw what is a perfectly innocent satisfaction from their social value.

Honestly, I do understand. It’s rewarding beyond measure to know that you can help or inspire another person. There is a deep, quiet joy in being able to support a friend or loved one, in the everyday things of life as well as the crises. I can imagine how that situation being normal, and not the beautiful exception, might shape a person’s self image; and might shape what they come to expect from the world.

Nice people know, with quiet certainty, that their value is intrinsic. This is their gift. They always know what to do and what to say. They’ve never had to think about the impact of their actions. That impact has never – to their knowledge – been anything other than good.

And then they meet me.

Actually, it’s not only me. It’s anyone they meet from the Other Side: poor, frail, depressed, sick, disabled. Anyone whom the system does not support. Anyone from whom, in fear or in pain or through simple lack of ability, the social niceties in just one of many crises might slip away.

Nice people are hurt when you snap at them to STOP causing you pain. Nice people feel pressured when you beg for their help. Nice people know the best way do things is gently, with trust and with patience. They’ve never had to step out of their own heads to feel what you feel. And that’s the danger, right there: that they’ll treat their own passing sadness with more urgency than your desperate, existential need.

Nice people are used to feeling respected. They’re not used to holding back their feelings when someone is rude to them. They’re not used to thinking about the “why” before they complain. They don’t know your pain. They don’t mean to hurt you. But they do.

Nice people are wonderful when things are going well. When you’re passing and functioning and ready to have fun. And nice people can be great at propping you up for a while, just until you get back on your feet. They can be there for you. They know all the sorts of crises that normal people go through – losing friends, breaking up, divorce, bereavement – and they really do mean well. They want to be able to use their skills to help you. But they are so sad, so disappointed, when you can’t be fixed.

What those nice people don’t realise is that we can’t all be like that. Some of us have lives where being on your feet and fully alive is the transitory thing. Some of us can’t rely on being there for others, not at just any time. Some of us save ourselves in anticipation of those glorious days when we’re not sad, frightened, confused or in pain. Some of us mourn those selves that barely see the light of day.

Some of us need “nice people” to be different. Some of us need them to realise that speaking up, again and again, when your basic needs aren’t being met isn’t selfishness: it’s survival. That being in constant exhaustion or confusion can preclude giving away parts of ourselves to support others. That making one choice between being realistic about our capabilities or chronically unreliable doesn’t make us bad people. It’s just that we didn’t have the choice you had. To be nice.

Dipping my toes in the water…

Too much has been going on so I’ve been hiding away from the world for a while. It’s been difficult to keep up with reading blogs and news stories, let alone writing. I suspect many people find this, but when I’m struggling I need to save my emotional energy for my own problems. Reading about other people’s pain and how many things are wrong in this world, which I am helpless to resolve, just makes me want to cry.

I think I’m back now🙂

I thought about putting together a post for this week, but then I looked through my reader pane and realised I really don’t need to! It’s incredible to see such a lot of amazing stuff all out at once. So it might seem like a cop-out, but today I’d really like just to share a few links to pieces that made me feel hopeful.

Firstly there’s Progress Not Perfection. Taking a refreshingly impatient view of the “grumbles” on social media, she’s running a series of posts on things that go well in mental health services. While there’s definitely a place for grumbles – it helps us all to be able to vent or just share our experiences with people who understand – these stories definitely perked me up. You can find the first post in the series here.

Then I read this post from AutiWomanDifferentBox. It’s a big commitment to seek out an adult diagnosis, and as far as I can tell everyone has a pretty unique experience of the whole process. Adult autism services are improving in the UK, but there are still huge gaps by region, and GPs seem to know very little about diagnosis and support. The National Autistic Society has lots of information. This was also a good post to remind me I should write about my experiences so far of seeking an NHS diagnosis…

Finally there are a couple of good posts at Michelle Sutton Writes about dealing with “challenging” behaviours in neurodiverse children. I’ve learned a lot from this blog, largely about self-acceptance. It’s not cushy or sentimental, but offers practical strategies about how to just get on with life when your needs, and those of your children, aren’t automatically met. Her piece here is a reminder that making “difficult” children feel safe is an absolute prerequisite to teaching “acceptable” behaviours in a safe and meaningful way. I love to read this because it reminds me that even when things are difficult I am not just a naughty child (yes, I know I’m in my late twenties…), and that as a first step, just focusing on meeting my own basic needs will make everything else start to flow more easily. (And also, if I were ever a parent, I would want to do it like this.)

And then there’s this. Which needs nothing more!

That’s all for tonight folks. Happy reading🙂


“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.