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?

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(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.

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!