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.

Talk to me!

One of the things I struggle most with at work is keeping on top of what’s going on around me. Oh, absolutely, I know my own job. But especially when I’m under pressure, I find myself shutting people out to the extent that weeks can go by before I speak to anyone else on my team. The day-to-day conversations where we bounce around the technical stuff and help each other out just never seem to happen.

Lots of team meetings are getting cancelled at the moment. It always seems like we’re too busy, or there’s something more important to do; people just drop out until there’s barely anyone left. I thought at first this was a bad thing. But as it turns out, it doesn’t have to be.

See, when there are several people in the room, as an autistic person I am never going to follow that conversation. We’ve tried to impose structure so that it’s easier for me, but that inevitably restricts the depth of content – it makes people uneasy if they feel like they’re talking to a schedule. The fewer people there are in that meeting, the more likely we are to make something of that time.

So over the past several weeks people have cancelled and cancelled until there are pretty much just two of us left. Not always the same two, but since I plan and prepare exhaustively for meetings I’m usually one of them. The temptation then when I’m stressed or struggling with speech is to make some excuse: there’s only the two of us, it isn’t really worth it, I haven’t got anything to say. Even when I have.

But the last time this happened I was getting a little bit fed up. I was doing my best to keep on top of things, but I honestly felt like I had no idea what was going on. I felt isolated and at a loss, and I wanted some input. So I didn’t cancel the meeting. I reinforced it. Instead of emailing an excuse, I sent a request. I asked: can we find the time to do this? I’d really like to hear about your project and how you’re getting on.

It was a massive leap of faith. I’d never have had the nerve just to email this one person and ask to talk with them about their work. It’s not because they’re scary or anything: starting an unstructured dialogue is just something I cannot do. But it was amazing. We spent half an hour or so having a proper chat about the technical details of our projects, without a third or fourth or fifth person to get in the way. No bouncing the ball or watching for signs of disengagement; no being worried about one subject dominating the conversation. Just getting properly absorbed in the really interesting stuff.

Sometimes I think in terms of people who can communicate with me and people who can’t – but in reality it’s the context that matters. These are the same people I go into meetings with and, collectively, I am literally terrified of them. I’m scared and ashamed because I know I won’t follow, and I’ll try to engage but the faux-pas will be just excruciating. I’ll watch from the sidelines and try not to stim, even though it helps, because of how it looks. I’ll ask for clarification and the new answer won’t make any more sense than the first. But talking with my colleagues as individuals, one at a time, makes so much difference to my ability to understand and interact with them. I don’t have to worry about how I look any more, because in that context I’m actually able to make a contribution. We communicate. I am involved.

I can’t do this every time. But I think that next time practically everyone cancels on a team or technical meeting, I’ll see it as a blessing in disguise.

This world we live in

I’ve been a bit sick this week, so instead of actually doing anything I’ve been mostly curled up on my sofa reading the internet. A lot of what I’ve read makes me sad; some of it makes me horribly, guiltily grateful. And that makes me angry.

For example: this guy I’ve been reading for a while. He has a son with Down syndrome, and he writes a lot about how we could and should do better for disabled people in our societies. One of his older pieces, which is linked from the post above, talks about how a “cult of compliance” discriminates against and allows the abuse of children with disabilities, and in particular seems to be used against children who are not white.

Another post that turned my stomach was something that came to me through Facebook. I’ve never read this woman’s writing before. She tells a story about a college student in a dangerous situation, whom she and her friends tried to remove to a place of safety; but every authority they encountered was more interested in rebuking the girl for drinking than in keeping her safe. In fact, the only option they gave her was to go back to the place where she’d been about to be raped.

So once again in my life, I find myself thankful. I am thankful that I was born white, in a Western country where to be any other colour, it seems, is to be presumed guilty until proven innocent. I am thankful I was not diagnosed autistic in childhood, despite the help and supports I might have accessed, for fear of the stigma and abuse (intentional or otherwise) that could well have come with them. I am thankful, God help me, that I am not pretty enough to be a desirable target for rape.

What sort of a world do we live in that any child (or adult, for that matter), particularly one made vulnerable by disability, should fear for their safety because of the colour of their skin? What sort of society hides its disabled children away and physically abuses them for being unable to comply with certain commands? Why is it OK that a pretty woman can’t just enjoy being pretty without fearing the consequences?

I should not be grateful that I have not encountered those things – not through any virtue of my own, but through an accident of birth. I am angry that others have, and do, and will continue every day to suffer through the accidents of theirs.

How can we live in this world?

Dealing with change

Change is hard. It’s hard for everyone, to a degree. But for an autistic person, dealing with change and disruption to routine is on a whole other level. The sheer level of confusion and disorientation is indescribable (at least for today). The elephant panics. A lot.

The organisation I work for has been implementing some big changes recently. I knew they would be hard on me, so I made a plan. Let me be clear: I planned my whole life for the affected period around navigating this change. I did some batch cooking and filled the freezer with healthy food, so I wouldn’t have to cook in the evenings. I scheduled my work tasks (with the permission of my manager) around the disruption. I pulled out all the CBT techniques I learned last year for maximising personal resilience. It didn’t work.

The advice I would give anyone on the spectrum preparing to navigate big changes in their life – especially at work, and definitely if the change is the biggest you’ve ever had to deal with – is as follows:

  • First and foremost: look after yourself. No, seriously. Make a list of all the things you need to be physically and mentally healthy (food, exercise, quiet time, sleep, special interests if you have them, etc), and prioritise them in your schedule. Plan ahead with the basics as much as you need (I have coloured pens and everything!). And if you have friends who understand, let them know what’s coming. They might be able to help.
  • At work: don’t underestimate the impact. If you think it’s going to be bad, talk to your manager at an early stage (or another manager, if your own line manager is unsympathetic) to see what options might be available to you. It’s always better to manage expectations than to have to explain yourself after the event.
  • Be proactive in asserting your needs. As soon as you become aware of the change, figure out what you need and make sure the right people know about it. Even if you don’t know exactly what you need, try to identify the people who might need to know and pave the way in advance for those conversation to happen.
  • If there is any risk of meltdown at work, you need to make plans with your line manager (and/or a trusted colleague) for what should happen if things get out of hand. I have anxiety issues, as well as an apparently chronic inability to look out for my own needs, that have brought me to the brink of meltdown in the workplace on multiple occasions. Tell your manager what you need them to do to diffuse the situation. Make sure the plan has space for them to enforce any consequences for unacceptable behaviour, but make it clear that they need to wait for you to calm down and recover before this will have any effect.
  • And finally: always know where your safe space is. You never know when you might need it!

Good luck!

Being thankful

On Saturday I wrote about building safe spaces. Today I want to talk about maintaining them.

Maintaining isolated safe spaces is easy. Living alone, I come home to an empty house where I can control of every aspect of my sensory environment. Struggling with visual processing? Turn the lights down, put on some soft music and close your eyes. Too much noise? Turn off the radio, put on slippers and carry a bubble of silence around you as you move. Completely overloaded and incapable? Curl up in a blanket and make sad noises, for as long as it takes. No one will judge you.

Some of my safe spaces were built with the help of allies. Finding out that other people could help me was a massive step in coming to terms with my autistic identity and embracing what that meant for my future. The help individuals have given me in building and maintaining safe spaces is something for which I am profoundly thankful.

Expressing emotions, including gratitude, is something I struggle with. But I’ve learned that it’s very important to let people know when they’ve done something special. It feels good when someone thanks me, and I know that’s not just an autistic thing! It doesn’t have to be complicated – you can write a template script for thanking someone. And it’s absolutely OK to email or write a “thank you” note if you (like me) struggle to approach individuals in person.

As well as making people feel good (which is only fair), a thank you reinforces the helpful action. A person reminded that they’ve done something good is more likely to remember and be willing to do the same thing next time. So as a mechanism for maintaining the sanctity of safe spaces, and sometimes for finding new allies, gratitude can be powerfully effective.

I don’t thank people indiscriminately. There’s a fine line between thanking someone for going out of their way, and thanking them for treating me (as an autistic person) with the basic dignity and acceptance they would afford to any human being. The line isn’t always clear, and varies for different people. But for me, here is what I aim to do:

I will thank someone for doing a particular bit of work, or for helping me with a task I was struggling with (whether or not due to my autism). We all have different strengths and weaknesses – maybe I will be helping them the next day. But I will not thank someone for working with me. Every person has a different working style; thanking someone for accommodating mine implies that mine has inherently less value than theirs.

I will thank someone for changing a planned activity, or going against the majority preference, to accommodate my needs. That might be choosing to go to a different pub for dinner because the first choice was too noisy or overwhelming. But I will not thank someone for being my friend. If I have to thank someone for tolerating my presence in a social environment, then they are not my friend.

I will thank someone for providing clear details in written format, whether after a meeting or in preparation for an event. That’s something most people don’t need and I do, so I’m always grateful when it’s accommodated. But I will not thank someone for listening to me and taking my words at face value. I say what I mean: nothing more, and (unfortunately!) nothing less. I don’t need to apologise for the words someone else has written in the gaps between my own.

I will thank someone for quietly explaining my body language or behaviour to avoid a misunderstanding. Particularly when I am stressed, it is very difficult for me to explain without making things worse. But I will not thank someone who knows me for letting me stim (rock or fidget) in a safe space without interruption. That’s a basic need, and they know that. I should not have to apologise for not masking in their presence.

But on a final, more positive note: one thing I will always thank a person for is if they have seen me in distress and done the right thing. Actually, I will thank anyone who has done their best to do helpful things, even if they got it wrong. The people who genuinely help you out when you’re melting down in a public place, or non-verbal, or shaking so hard you can’t sit still – the people who at that point still treat you as a person – are the people you want and need in your life. For those people, I am truly thankful.