Seeing myself

I’ve written about meetings before, and how they’re the stuff of nightmares. This wasn’t a meeting, per se. This was a briefing. This should have been safe.

We were talking about team cohesion. The nightmarish concept of team building dissected in detail – obliquely, not by name, but recognisable in full and terrifying form. But the everyday stuff got a mention too. How to encourage knowledge sharing, technical briefings; just talking to each other about what we’re doing, getting a feel for what’s going on in the department.

“I know”, says one smart guy, full of confidence and authority. We’ve been talking about people sharing their work in briefings, informally, chatting on stage or gathering the team around a plot. I can do this. I would enjoy this. “Let’s video the talks. We can save them on our internal website so people can share their knowledge”.

But no. No, this is not a thing. Chatting with my colleagues about a plot: every day, absolutely. But videoing; picturing; recording? That is something altogether more sinister. I almost bolted the room.

I know, you see, that I am wrong. My movements are clumsy, hands ceaselessly restless, legs pacing out of key. I have a crooked smile. My voice is too loud, too forceful. The pitch, often rising excitedly, is too low for the brightness and enthusiasm it means to convey – I’ve been told it’s intimidating. There is no music to the spoken tone, no phrasing to give the lines their depth of meaning. Speaking in words is a graceless act, stilted, all harsh lines and corners. Like a small child draws, with the pencil scrunched up in its fist, thick lines spreading from a blunted edge pushed too hard against the paper; and like that drawing, the finished product is artless, naive, painful to the ear and to the eye.

I exist each day knowing this about myself. I know how I look; how I sound; how awkward it must feel to be in my presence. Yet I hold my head high, having taught myself to believe that this does not matter. My talents are valuable, and they lie elsewhere. And this is completely true.

But that knowledge is fragile. The understanding is brittle. And seeing myself in image, speaking and moving in that way that does not fit, that does not flow – being so wrong – would shatter my confidence to the bone. To be recorded, this shattering of self-image branded onto physical media to be relived again and again and again, is merciless in its permanence. The humiliation forever and inescapable. I cannot bear to see myself.

It is strange to be faced, out of the blue, with the remembrance that normal life is not like this. That most competent adults are aware, confident and comfortable in themselves. This fear of self-awareness on a literal, physical level is not something that’s accepted in the professional world. My fear is unreasonable. It’s weakness. It’s unprofessional, and it will hold me back.

I do resent this. I resent that my professional life is governed by a system that demands conformity. It is not enough to be good – even sometimes to excel – at what I do. But I must look right. I must “be” right. I must smile, and move, and think, and feel, like everyone else. I must be open and willing share my inner self; but not as me: as some false, created inner self that looks like it’s supposed to. My work is not enough. I must have the courage and the confidence to show my “wrong” self to the world, to suffer judgment and humiliation, with only that tiny inner voice to remind me that the only person qualified to judge me is myself.

It’s hard, sometimes. Seeing myself.

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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 16% 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.

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.

Fear of time

When I was younger I had a recurring nightmare about being chased by clocks.

They weren’t real clocks. Not as such. I just never had the right words. I was walking down the corridors at school in the early morning, through the music department, where I used to go to practise before registration. There was always something behind me. I didn’t know what it was, but I started to walk faster. It didn’t go away. There were people and movements and abstract things that told me that time was running out of my control. I ran to class, but it didn’t make a difference. The day was over. The time was gone.

The dream went away, but the feeling stays with me. I can’t put a name to it. Reading tells me that this is what most people call “anxiety”. The word seems shallow compared to the depth of the emotion. It’s like seeing the tracing of a brilliant painting, the colours translucent shadows of reality. It doesn’t come close to describing what I feel.

I wonder about time. I wonder, as something to which society so rigidly clings, at how little it is absolute, and how much only perceived. A great rippling canvas stretching out into the distance: but coloured, folded, warped and stretched by each of our individual sensory perceptions. Some autistic people describe having no sense of objective time, hours passing without note – a luxury occasionally afforded by my beautiful empty days. There are those people who always seem to be lost, showing up late to everything or not at all. Sometimes I feel like one of them. But the virtues of punctuality in social settings, it seems, so inextricably linked to the dreadful sin of rule-breaking, were deeply ingrained in me.

I lived with the feeling for so long it all but faded into the background. Over the years, it became a part of me. It would build up inside me like the invisible coiling of a spring, tightening, squeezing into smaller and deeper spaces day by day as I held it at bay. As I balanced and juggled an ever more complex schedule, with dates and hours and deadlines and people, so many people; until I didn’t know where I was or what day it was or where I was supposed to be. Until I didn’t know who I was apart from this feeling.

And then one day it would release. Suddenly. Cathartically. I would be alone one night when it broke: a storm of crying, words and tears and noises spilling out of me like a forgotton stockpot bursting its lid off the boil. No one saw or heard those moments. Cradled carefully away from the world, they spilled out intermittently into those rare, precious, and ever-narrowing spaces where I was safe.

These days, I recognise the signs. I trained myself to see the slow changes in reaction and ability, responding to the quiet buildup of ever-suppressed anguish. I can predict, sometimes, when a situation will make things worse. And then time speeds up around me and I know that I am lost.

I can’t tap the feeling once it’s bottled. I can’t siphon it off. The tears won’t come. Sometimes I hear a song and it bubbles up, just for a moment, and I wish for that sweet relief – the still, deep sleep that follows hours of crying – but it won’t come. To keep something so deeply buried gives the illusion of power; as if I could possibly control something so primal, so powerful. So many years spent hiding this from everyone, bricking up every outlet, so afraid for this side of me to be seen, that now there is no outlet at all. Nothing but this violent breaking apart, spewing the poison from inside of me, leaving me empty and clean. The heartbreaking relief every time I don’t damage anything in this outpouring, that now I’m safe again. The hope that I can rebuild myself. Remember who I am. Who I was.

There are no more clocks, but the nightmare is here. It is me.

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.

Coming down

So the medication game isn’t going too well, and after a few rounds of entertaining side effects I’ve decided to give my body a break for a while. I’ll get the current cocktail of drugs out of my system and see where the anxiety settles before setting myself up for the next round.

It’s a strange place to be. Every set of pills I’ve tried has dealt with anxiety, in the same sort of way you might support a sprained ankle in a full body cast. (With hints of steamy hot tub infused with heady perfumes and surrounded by pink floating bubbles…) It’s a question really of whether you can accept total plaster-coated or heady-hot-tub-induced immobility to alleviate that single, focused point of pain.

(I’m not making any serious analogy between the intensity of my anxiety and a sprained ankle here. Although if you do walk around on a sprained ankle for a while pretending nothing’s wrong, it does get pretty bloody painful.)

Given the side effects, I stopped taking the latest magical brain-fixing substance a few days ago. It’s testament to the horrendous paucity of research supporting mental health medication, appropriate dosage and the like, that I wasn’t fully free of those side effects (not withdrawal: honest to God side effects) until today.

So today I’m leaving behind the fluffy cloud of fearless, drug-induced optimism that has buoyed me up over the past few weeks. The perspective is exquisite, and unique. For the past few days it’s been like floating slowly down from some incredible height, drifting gently towards my real self, somewhere on the ground below. I can see myself down there, coming more clearly into focus. I’m re-establishing the limits of my body and rejoicing in the physical wholeness of what I’m returning to.

But at the same time, that woman on the ground is broken. She stands up straight and can run for miles, but when she’s close to another person or sees a thing she doesn’t expect, she cringes. I had a really good run today, for the first time in weeks. But then I went back upstairs and walked out onto one office floor, forgetting the one I wanted was on a different level. The wrongness of the different layout when I opened the door hit me so hard I almost squealed. The little startled noise you make when you see that one truly awful costume at Halloween: the guy with his head tucked under his arm, unexpectedly encountered in the shadowy light of a street lamp. Or a REALLY MASSIVE SPIDER! That jolt and recoil that’s almost physical. It’s such a little thing. But when little things like that are an everyday reality – sometimes many times every day – they start to have an impact.

I want to get back on a level with that girl on the ground. I’m almost there. I can help her out with some of that strength and resilience I’ve regained from being seeeeeeeriously chilled out recently. I love her the way she is. I know it’s only a matter of time before she’s out of spoons again; she can’t do what’s being asked of her at this point without help that’s just not there. But from up here it seems like maybe, together, we’ll be able to face that when it comes.

Working with anxiety

On the whole, understanding that I am autistic has been a very positive change. A diagnosis has helped me to understand my profile of strengths and weaknesses, take better care of myself, and start to improve in skills relevant to my job. But the one huge negative aspect has been the fear.

Anxiety for autistic people is real. The book “Anxiety and Autism” by Nick Dubin goes into a great deal of detail about this issue. Tony Attwood also puts it well in his “Complete Guide to Asperger Syndrome”. This fear of real outcomes is not the same as an anxiety disorder, and in my experience responded badly to CBT techniques. The central premise, that facing an anxious situation provides positive reinforcement each time the “worst case scenario” is not realised, is somewhat counterproductive when that feared scenario is perhaps the most probable outcome!

Most of the unavoidable anxiety in my life at the moment is associated with the workplace. Not my job – I am confident in my ability to perform in that – but the workplace environment. After my diagnosis of Asperger syndrome it dawned on me gradually that the social issues I struggle with form a huge part of working within a large organisation. The ability to do my job, in itself, is not enough. Problems that are largely avoidable in my personal life rear their ugly heads over and over again at meetings, workshops, coffees and conferences. There is a fundamental disconnect between who I am – my intentions, motivation and abilities – and how I am perceived. The potential impacts, and my lack of influence over those outcomes, can be terrifying.

Given my experiences over the past year, I realise now that this fear will probably never go away. There is nothing I can do to escape it, and perhaps I should not try. What I can do is try to reduce the probability of the outcomes I most fear, and look to mitigate the impact anxiety has on my working life. Whilst medication, for me, is an important part of this process, managing expectations and modifying my work environment are equally crucial.

The single most important thing that brings me in to work on those terrible mornings where I am so afraid I can barely speak is the relationship I have with my line manager. Having disclosed my diagnosis early on, I was offered nothing but support, and an open door to discuss any issues as and when they arose. Being able to discuss and agree different coping mechanisms reduced the pressure on me to hide my fear. Once the diagnosis was official we arranged some training for close colleagues, which helped reduce the prevalence of terror at being constantly mis-perceived.

From an autistic perspective, I realise that highlighting a relationship as the most important factor may not be excessively helpful! The line manager relationship can be difficult to build, as it is so dependent on the individual. I was very lucky that my own manager was proactive early on in forming that relationship, so that by the time I realised the depth of my problems, the support was already available. If you can’t develop that sort of trust with your manager, it might be worth looking to build a relationship with another authority figure close to you in the organisation. If your organisation has a mentoring scheme, this can also be helpful as an additional line of support.

Alongside that relationship, taking control of the “little things” is something I’ve found can make a big difference (clichéd but true). Some things to think about might include:

  • Have an “escape plan” for any specific situations that make you anxious. This can be as simple as a script to get out of a meeting if you start to feel panicked. If it’s agreed in advance, you don’t need to worry about whether it’s appropriate to leave or what the consequences will be if you use it.
  • If there’s a possibility you might lose words or be unable to explain your needs when anxious, it’s worth having a plan to communicate this. This could be a simple card or flag to warn colleagues you’re struggling, or you could prepare more elaborate scripts / indicators in advance.
  • Scripted email templates can help if you have trouble asking for support. Talk to trusted colleagues in advance about what you might need in a certain situation and what they can do, so that they know how to react to your email script. Remember to thank them for being there, and again when you are feeling better after any incident where they’ve helped according to the script or plan.
  • Let your manager know as soon as possible if anxiety becomes overwhelming or starts having wider impacts. Managing expectations is important, and it reduces the pressure you feel to hide what’s going on. And who knows, they may even be able to help!

I’d be intrigued to hear from anxious autistics doing paid or voluntary work in other organisations. How do you manage your anxiety when working with other people? Is there anything else you’ve found that can help?

(Un)medicated

Ele is currently having a mental health wobbly. Somewhere at the centre of this wobbly has been acknowledging and accepting that she can’t get through what she’s currently going through without medication.

I really struggle with attitudes to medication for mental health problems – including my own. The first time I told anyone I was on medication (last time, not this time) the reaction I got was of pure shock. I’ve encountered people who view medication as giving up; a sign of weakness; failure; lack of discipline or determination; and a shameful thing. Many others are determined to see medication as a crutch: a temporary support that mustn’t be used for too long, just until you can get back on your feet. I’ve been cautioned against the dangers of “becoming dependent”. Of all the people I know, only the few who have actually felt the benefits of medication in their own lives (and, thankfully, my GP) will view this choice in anything other than a negative way.

For the hardened shamers, there are many bloggers and artists who have confidently and eloquently explained the error of this viewpoint. One of my personal favourites is this comic, by Robot Hugs. If the skeptics don’t look at this and at least reconsider, they’re not worth my time.

The crutch argument, though, is something I find personally much more difficult. This is the one I agonise over. I suppose what it boils down to is the nature of the mental health problem. Just as with physical illness and injury, some things the body will repair in its own time, and some it won’t. You might be on crutches for a while with a broken ankle, before it heals and you learn to walk again. But if it’s a broken spine, you’ll be in a wheelchair for the rest of your life.

Regardless of the nature of my issues, the concept of medication as only a temporary support in itself is damaging to me. The problem is that if I see medication as a crutch, I am driven always to think forward to the time when I will be “mended” enough to set it aside. As soon as I reach that comfortable place of clearing my head of anxiety, or of thoughts that I don’t deserve to live, I’m immediately afraid and ashamed of relying on this medication that I now “don’t need”. Obviously, if I’m not actually suicidal, I can come straight off the antidepressants – right?

But what if I haven’t stopped needing that crutch? Just because I feel better when I’m taking medication, doesn’t automatically mean I’ll keep feeling better once I’m off it. Hopping along on crutches for that broken ankle, you might be absolutely pain-free, but you’ll know straight away if you drop them and try to put weight on it! I don’t know how much of this is me pushing myself too hard, or being too aggressively independent, but when a support is labelled as “temporary”, the anxiety of losing the crutch combined with the pressure to try and drag myself up without it is almost too much to bear.

Why is dependence on medication for mental illness seen as such a bad thing? We don’t shame diabetics for their insulin dependence. Is it because it’s something we can’t measure? There’s always the temptation to demand proof: proof that someone is really ill, that they really need those pills they take every day. It never seems to be considered why on earth we would take this stuff if we didn’t really need it! Medication is not an easy option. The paucity of knowledge around how the brain actually works makes medication for mental health issues less a precise science and more a matter of throwing different drugs at it until one of them does more good than harm. The side effects frankly suck. Why would anyone do this to themselves unless it were the best option left to them?

I’ve tried self-help and I’ve tried CBT. I’ve read all the popular wisdom on staying physically and mentally healthy. I kept a mood diary for a while and tried to identify triggers. Then I found out I was autistic and read an awful lot more.

But now I’m here. The local mental health services don’t want to deal with me because I’m on the spectrum. I’ve got as far as I can with CBT, and learning more about autism and all the things that are “wrong” about me (and how they could have been “fixed” if I’d been “treated” in childhood) is only adding to this hopeless fear. For me, right now, I know with complete certainty that medication is the right choice. I know I am absolutely right to stay on it for as long as I need, and to use that time to build up all the confidence and resilience I can. I just wish that knowing were the same as believing.

Building safe spaces

One of the things I’ve come to realise I need more and more on an everyday basis is safe spaces. These are spaces where I don’t have to pretend to be normal, with all the anxiety and eventual exhaustion that can bring. In a safe space I can take off the mask, ignore what I have been told is the fundamental strangeness of my own body language, and concentrate on the task at hand.

Since I got my diagnosis I’ve worked on making lots of everyday spaces “safe” for me as I am. I started small: with little changes to my negative internal dialogue home quickly became a safe space, and I found some quiet places at work where I could escape for periods of respite. But then I started to look at work in the wider sense, as somewhere I spend 40 hours every week and have to achieve certain goals. I enjoy my work – especially when the science is going well – but I’m not given the space to be alone and concentrate. So I realised I had to try to make more working spaces safe, even though I might encounter other people.

The process was objectively straightforward, but slow, and it wasn’t easy. Starting with my manager and a few trusted colleagues, I took each person aside individually. I talked to them about the fact that I was autistic, and that my behaviours and responses might not mean what they expected them to mean. I told them about taking things literally and not always knowing how to act in social situations. The responses were generally encouraging, if awkward at times, and I gradually gained confidence in talking to people I did not know so well. Later I organised some formal training to help give my colleagues a wider overview of what autism actually means. Now my desk at work, despite the open plan layout, can be an almost-safe space maybe 90% of the time.

Recently I’ve started working on safe spaces for other parts of my life. I go to a couple of choirs, and I’ve started to pick out individuals who might be supportive. What I’ve realised is that unless there’s an outright bully in a setting like that, it only takes two or three people to know what you’re struggling with to make the space relatively comfortable. Making routine activities safe is the difference between fighting my environment every time I leave the house, and only fighting it once or twice a week. I have more energy to deal when things go wrong.

I’ve been really lucky in encountering positive attitudes with everyone I’ve approached. An integral part of that was being surrounded by the right people, but there was also work on my part to help things go smoothly. Painstaking care and preparation went into choosing who would make a good ally and who would not. It’s important to trust your instincts here: anyone I didn’t feel I could or should approach, I left to the formal training at work, and in other settings I have learned to avoid. Timing and setting are also important, if you can control them. Disclosing in a crisis (which has happened to me on occasion) is not ideal!

But the lesson I’ve learned over the past year or so is that while “alone time” is crucial as a safe space where I can be myself, it’s not the only one. Other people can help to build and defend safe spaces for me throughout my world. Those safe spaces will be more transitory, and less than the 100% safety of solitude at home, but they are there. Learning to identify those transitory spaces and ask for that help to build has given me more confidence, and I hope will continue to do so over the years to come.