Two years too long

I try not to let things get to me. I have a tendency towards strong emotional responses when faced with unfairness, injustice or blatant prejudice, regardless of whether it’s directed at me or others. I try to put that in a box. Unless I can take action to change the situation, I do my best to ignore realities that hurt me to feel. But still, every so often, something will set me on fire.

I saw this, from the NAS:

And it made me SCARY mad.

I’ll never forget the night I realised I was autistic. I was walking home from a concert I’d cried all the way through, with the friend that had kept quiet all that time. We walked three miles in the middle of the night because I said I couldn’t face the bus. I dropped a line about probably being “a little bit autistic”. And he said, “yeah”.

I got home and looked it up on the internet. Luckily I found the National Autistic Society, rather than anything more sinister. But still, it was about 2 weeks before I could really stop crying.

The concert was on a Friday. I spent half the night reading up on autism – seeing myself everywhere, my face reflected in the little things. I read about how to go about getting a diagnosis: what to tell the doctor and how to prepare. I made notes, volumes of notes, about how I fit the criteria. I wrote constantly. I cried, on and off. I slept in between.

There were people who scraped me up off the floor during that time. They could be on the phone, made sure that I ate. They came over when I needed them. Although I hadn’t even known myself before – I didn’t know how to be a friend – they were there for me. They were friends, good friends, even though I wasn’t. I didn’t deserve them, and I was so, so lucky I had them. They probably saved my life. But that’s not what this story is about.

I went to my GP the following Monday. I sat in the waiting room for an hour, holding everything in. Before I knew it didn’t matter if I rocked, it couldn’t hurt anyone, I held myself rigid. I clutched the printout I’d made: a bullet-pointed list under each criterion. I took it in with me, and burst into tears.

My GP was great. She took the printout to read. She didn’t let it faze her that I cried, that I was strangely calm and coherent while I cried. She took me seriously, and told me she didn’t know what the procedure was, but could she phone me. Then she phoned me that night after work, and said there was a form for referral. Since I knew myself best, would I like to fill it in and send it back to her? A couple of weeks later I got the letter from the NHS saying the waiting list was long, but I was on it. And things went quiet.

It was well over a year before I heard from them again. The diagnostic service was amazing. They treated me with compete dignity and lack of fuss, accommodated my anxieties as a matter of course, and gave me all the right information to feel comfortable. They knew what I needed without me even having to ask! But by the time I had an NHS diagnosis, bringing with it precious access to the local autism support group, it had been almost 18 months.

Two years is too long.

In the meantime, I’d been lucky. Incredibly, impossibly lucky. I was able to get funding for a private diagnosis. Within six months of everything falling apart, I had official recognition. I had documents that entitled me to support at work. I had access to some limited expertise. No longer stranded, with this glimmer of a safety net, I could begin to build from scratch for myself an identity that was real. Yet for those six months, I had nothing. I was nothing.

I kept my job. I kept my house and my car. My family supported me. The people around me, although they never knew it, kept me from suicide. I was given time and space to recover. I built a shell, a hollow of myself – and it somehow held. For six months. I would not have survived for two years.

Two years is too long.

My GP did everything right – more than right. She listened to me, read what I’d written, realised I knew what I was talking about, and made it easy for me. Not everyone has it that easy.

I have friends, now, seeking diagnoses. People I care about, stranded and struggling. You can’t hope to get a referral unless you’re struggling. One’s GP flat out says she can’t make a referral. Another can’t even get a face-to-face appointment with the GP: only a phone consultation. I couldn’t have had that conversation over the phone – how can they? Of course: they can’t. I walked into my GP surgery and had a referral within two weeks. They’ve been fighting these barriers for months. And that’s before the clock even starts.

Two years is too long.

This isn’t a political campaign from the NAS, in the sense that they’re supporting any one particular party, but it’s the first campaign that’s ever really hit me. If you’re in the UK: register to vote; then do. I’ll vote. It’s small. It’s all we can do.

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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.

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.

Writing less; running more

A short post today as it’s all I have in me.

The title says it, mostly. Not completely.

Life feels somewhat precarious, and has for a while. Recently I had a very bad experience at work. Once the dust had cleared, among other things, it made me realise I have to start standing up for myself and being clear about my needs. For someone with anxiety issues, limited emotional vocabulary and absolutely zero confidence in her negotiating capabilities, this is a big deal. It’s taking a lot out of me.

For the first time in my life, over the past few weeks, I’ve started losing speech. Not be able to find the right words, or having to make several attempts, isn’t new for me – but not being able to get any words out at all, is. It’s an anxiety thing: I think it’s what Tony Attwood calls “selective mutism”. It’s very frightening. Objectively, it’s not happening often; but it’s enough now and in certain very public contexts that I need to have workarounds.

I’m currently balancing various parallel processes to protect my wellbeing, advocate for myself and stabilise my position. All of them involve communication, some with strangers (although, thankfully, I’ve managed to kick everything off without using a telephone. Small mercies). Being pretty awful at initiating contacts, executive function, planning and multi-tasking, and with the additional fear of losing my words, this is a significant challenge.

While the weather is good, running is a great way to escape from all that. I’m needing that a lot lately.

In the meantime, words are expensive. Meaningful words, doubly so. I’d dearly love to be posting something every week, but I’m not sure I’ll have it in me; and if I do it probably won’t be of the standard I’d like. So this is an apology for fewer (or bad quality) words, but also an assurance that this won’t go on forever. Hopefully I’ll be back with you soon!

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.

When there is no help

TW: suicidal thoughts; self harm.

A few years ago I got to reading and liking the work at Beauty Redefined. These twins have done some impressive work looking into attitudes around body image and body shame. I love the way their articles focus in on particular behaviours, and then they don’t stop there – they talk to me in my language about how to fight the prejudices and preconceptions of the world around me. I like that thinking!

For obvious reasons, Beauty Redefined focus a lot of their work on women. But the article they shared on Facebook today was about a man. Wentworth Miller. In this article he talks about the cost to him of mass-media body shaming whilst fighting an episode of depression which, not for the first time, he only “survived”.

So I admit I never watched Prison Break and have never heard of this guy before today. Remembering names, particularly actors’ names, isn’t really my thing. But this article really got to me. I’ve not had the chance – or the courage – to read much about suicide (except for the gooey happy clappy stuff about “don’t suffer in silence, we can help”, provided courtesy of our glorious NHS *). I have, of course, heard a sprinkling of those silly misconceptions perpetuated by people who have no concept of that moment when it begins: the still, deathly quiet contemplation of the need to end your own life. So they asked him: “was it a cry for help?”.

And he said: “No. You only cry for help if you believe there’s help to cry for.”

That is it. That is it exactly there. If I were in that place now (which, thank heaven, I’m not), it would have been a punch in the gut. I would have cried all night, and the next day, and probably the next night as well. I would have looked at the knives in the kitchen drawer and wondered whether that sort of pain would help me stay alive in the face of this fundamental truth. Because that one person knows this thing, and he said it out loud, and that makes it real.

Being suicidal isn’t an emotional thing – at least it wasn’t for me. It’s cold and dark and clear, like staring into still water on a silent night; and it’s utterly rational. It’s not desperation – it’s grief. You know, more clearly than you’ve ever known before, that this is the only option left to you. You feel that calm, quiet loss – such a waste of life. You’re grieving for yourself, before you die.

I am a strong person. I am driven and resourceful, and God help me nothing will stop me if there’s any other option worth trying. But sometimes there isn’t. Sometimes it’s the end of the day. You’ve talked to your manager and their manager about expectations. You’ve talked to HR about accommodations. You’re running and sleeping and eating healthily, when you can choke down the food. You’re exhausted and you’re scared for no reason, of nothing and everything, tomorrow and forever: you can’t make it stop. You’ve seen your GP and asked for advice, and she’s given you pills. You have talked to everyone you can; you’ve begged; you’ve told them you’re out of options, that you don’t know what else to do.

But there is no more help out there. There’s no counselling or therapy available to you – at best there’s an 18 month waiting list. Signing yourself off work is a thing that you cannot afford. You’re in pain and frightened. You’ve cried yourself to sleep for days on end. You cannot talk to friends or colleagues, or even tolerate the presence of people; work is a place of irrational terror. You know the pills will break your body, but not taking them will break your mind.

The GP is good. She asked you: have you been feeling depressed? She asked: are you feeling suicidal? She looked back: have you been suicidal before? She made you promise: you will tell us if it gets that bad again? So you promised, although you knew it was a lie.

Because there is no help. And you have no more energy to cry.

 

* Please note: I have absolutely nothing against the NHS. I have no political agenda and am not interested in doctor, nurse or GP-bashing. It’s just that the mental health services available to people like me, in the area where I live, are utterly and incomprehensibly shite.

Please also be assured: I’m not currently suicidal – although as you’ve probably guessed, I’ve been there recently. But if you were going to ask, thanks for caring.

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.