When I am disabled

Autism, including Aspergers, for better or worse, is classed as a disability. We could debate the rights and wrongs of that for a virtual eternity, and probably never arrive at a solution. A disability by the medical model: definitely no; although autism is often co-morbid with more physically disabling conditions. By the social model: yes. Yet by this argument it should be possible, in the right environment, for autism not to be disabling at all.

I am very fortunate. With increasing understanding of how my mind and senses work, and the things I need to stay healthy and functioning, I’ve been able to mould my life around those needs. I live alone, in a quiet area, which gives me enormous control over my home environment. And one of the most crucial benefits of my job is the autonomy I have over my working hours. With flexitime, as long as I put in the right number of hours per week, no one minds if I leave 2 hours early one day and make it up the next. Learning to use this for day-to-day self care and management has made a very positive difference to my life. I would go so far as to say flexitime is as important as any of the reasonable adjustments I’ve requested, possibly even essential for me to function effectively. And probably 90, 95, even 99% of the time now, I do function effectively. Day to day, I don’t feel “disabled”.

Sometimes, though, it strikes home.

I feel like I’m doing really well at the moment. Building on the things I learned over the past two years of crises, I’ve been picking up new challenges at work and pushing forward with my career aspirations. I’ve been overjoyed remembering the sheer satisfaction of working hard and being repaid in actual success! After those endless months of running as hard as I could just to stay where I was, sometimes it does seem too good to be true.

But this sort of thing has a cost. Using expensive social, professional and executive functioning abilities, even to have fun, drains my energy much faster than I’d like. And I’m still really bad at scheduling enough time off work or switching off when I’m busy and need down time. So inevitably, there was a meltdown. And unfortunately, it just kept giving.

The meltdown itself was fairly subdued. I knew it was going to happen halfway through the last choir rehearsal before our concert. The organ was too loud – so loud it hurt. I had to time my breathing, exhaling slowly through the pain, like pushing weights you’re struggling to lift. The hand drier in the ladies bathroom made me scream and cover my ears. In the two hours between the rehearsal and the concert, I didn’t talk. I hid in my coat, clinging to the passenger seat of my friend’s car as if my life depended on it, and cried. That was all. That night the organ didn’t hurt. We made something beautiful. The next day I didn’t do much. But it was still too much. I needed more time.

I went to work on Monday. I didn’t have to talk much. There weren’t any meetings in my calendar. I remember looking at the previous week and going, “my God, that’s why I had a meltdown”. I thought briefly about how to learn from that and see it coming in the future, but it felt like too much effort – I was too tired. I’d do it another day.

Tuesday came, and with it an opportunity: one of those small, everyday chances that when followed repeatedly add up to something that matters. I took it, ran with it, nailed it – boom! By 11am, I was wrecked. Wednesday didn’t look good. I caved in and booked the afternoon off. I couldn’t bring myself to take the day.

You know where this story goes.

On Friday morning I arrived at my first meeting of the day, a whole and complete autisticly overloaded wreck. It was classic “low-functioning” stuff. Rocking, avoiding eye contact, staring at the table or the floor. Muttered echolalia – lots of it. “Run, run, run”. My favourite word when I’m anxious, uncomfortable, embarassed; when I want to get out. “Run”.

I didn’t manage a full day at work that week. People saw things they shouldn’t have seen. Yet no matter what my echolalic mind was screaming at me, I couldn’t actually run. It just wasn’t a solution that occurred to me. Never mind that this is what paid sick leave is for – there’s no category, you see, for autistic overload, in the tick-boxes you have to choose from on why you’ve called in sick. So clearly I’m not allowed to go home sick if I can’t spell my own name. There’s no rule for that. It must not be allowed.

This is when I am disabled.

Next week I will have to explain to my colleagues why they saw what they saw. I will have to reassure them that this is a temporary thing – that it’s like being jet-lagged or having the flu. That even though I can be staring at a wall one day, crying, stumped by dilemmas that a five-year-old could overcome, that next week I can be even brighter than they are. That this is what it means to be autistic. I will have to swallow my pride, again, and trust that they will not judge me. And then I will talk to my manager and we will make a “rule” that I can follow, so that next time I will cope.

As long as next time is the same.

Pacing

On Friday I shut down at work. When my boss saw me, he asked how bad it was, and if I needed to go home. I did need to go home. So – somehow! – I said yes.

It was a very strange moment. I’ve spent the past year or two trying to set up safety mechanisms to cater for happenings just like this. Talking about accommodations. Making creative use of flexitime. Skirting around the issue of “bad days”, delicately, never quite committing myself to describing what it looks like when I am incapable, completely, of existing in company. They’ve seen the irritability, the frustration when I can’t find words, but they’ve never seen the end point. How I can stare at a plate of food and not make the connection to actually eat. When I just switch off and fade out, staring into space. How my system shuts off everything, refusing to process what I see or hear without conscious effort. How everything is an instinctive response. Decision-making is impossible. Something I can no longer force.

Until recently, I would have said no. I would have felt guilty, berated myself for what I am and the decisions that led to this point. I would have sat at my desk all afternoon, struggling through the simplest of tasks. That was the instinct: to hide. A deeply held belief that my identity is shameful, that I do not deserve supports, even those I invested and risked so much to build. But this time, I said yes.

I’ve changed.

Coming out of those places, of shutdowns and meltdowns and overloads, I can’t help but overthink. It’s what drives me to write. Although I am rarely asked, I want to find the words, to paint a picture for people who don’t share these experiences. I want them to know what it’s like for me, why I disappear from the world. I wanted to explore, for myself, why I no longer felt guilty for the sorts of mistakes that led to this shutdown.

The thing is, this week was challenging. A lot of non-routine things were going to happen. The plan was complex in places; the schedule was busy. No red flags jumped out at me, but several – if I had been looking – were distinctly orange. And I was tired going in. Perhaps I should have seen it.

Let’s take a look at those flags. A long evening straight from work: 2 events in a row, buffered by dinner in an unfamiliar pub. Cycling out in unexpected, driving rain. A 9 o’clock meeting the next day. Two. Doable, I thought. Then a nagging headache all morning, artificial meeting room lights too bright to countenance; the sweet, soft relief of Anadin at lunch time, and the feel of my body relaxing, losing tension in quantities I hadn’t recognised I’d carried. Every warning light suddenly flashing. Looking at my schedule for the next morning. Another 9am. And a 10, and an 11. And somewhere to be at 12. Maybe I should reschedule the 10 o’clock. But I had the evening free. I’d be OK.

And that’s where I failed. Because after several weeks of things going right, I’d forgotten my limits. I’d forgotten how too many things, even simple things, can make me fall over so completely. I’d forgotten that one evening to myself, given where I was, wouldn’t be enough to set me up for the next day.

Those orange flags weren’t red. For most people, they probably wouldn’t even be orange. Three meetings in a morning probably wouldn’t even raise a flag in most people’s eyes. But for me, that’s a challenge. And in combination with too many other challenges, that’s a red flag. The guilt isn’t that I fell down. The guilt is that I didn’t act to avert things when I had the chance. The guilt is that I got over-confident. It was going to be OK. I’d been doing fine. But I’m still autistic.

For most people, there is slack in the schedule. A bad day is recoverable. But for me, a week at work can be like running a race.

Picture a distance: the furthest you can run. (Or walk. Or, if you can’t walk, I expect you won’t need this analogy to understand.) Picture yourself at the start of the distance, taking a breath. You’re prepared. You know your pace. You know what you can take. You’ll stride out long, slow, easy. If there’s a hill, you’ll slow down. But you’ll keep going.

It takes some mental effort, pacing that race. You want to finish in a good time. But at the same time, you know exactly how hard you can push. You know if you go too hard, you’ll run out too early. You’ve done it in training, when you were still exploring your limits. You’ve felt that burning in your legs, the weakness, the whole-body exhaustion, wanting nothing more than to drop and curl up on the pavement. You’ve walked home in your running kit, shivering as the sweat cools off your back. Avoiding eye contact with anyone you pass. Wondering what they’re thinking of you. But today is the day you’ve been waiting for. And you’re going to get it right.

Imagine each week starting like that race. You know you can do the distance. You feel confident: in control. But you have to be prepared. You have to carb-load. You have to get enough sleep the night before. And if the route changes at the last minute – a diversion, a longer or steeper road – there’s always the risk that you’ll flake out before the end.

Anyone can screw up a race. You feel bad. It’s one stand-out event, you’ve prepared forever, and you let yourself down. It’s your own fault.

But there’s no need for guilt. Because you pushed yourself. You tried. You misjudged. There was shame; but there was also understanding. It taught you something. You’ll try again next time.

Every time I fall, I feel guilt. But every time I fail, I remind myself that everybody fails. Everybody makes mistakes. I’ll try again next week. And I’ll make it right.

Interpreting signals

One of the things I’ve observed about myself and other autistic people I know is that we’re not good at listening to our own needs. This is generally recognised as an autistic trait, but whether it’s completely inherent or partially learned is an interesting question.

On the “nature” side of the argument it’s clear that the ability to hyper-focus on a single topic – a talent shared by many on the spectrum – could interfere with the ability to process other signals. Descriptions of this trait are often framed in terms of a deficiency in social skills, manifesting as a resolute unresponsiveness of the autist to other people around them; but those willing to alter their perspective might note that the unresponsiveness is to almost any disturbance, and not just that which would usually prompt a social interaction.

But there are environmental factors too. The trouble with having fundamentally different self-care needs is that throughout our formative years, we, like all children, learn from other people. It’s a rare and incredible individual who can develop an understanding of their own needs and act on them effectively when constantly contradicted – implicitly or explicitly – by the rest of the world.

So it’s possible this lack of self-awareness is an autistic trait, or that it’s psychologically ingrained through years of learning that our needs can’t possibly be what we think. Or probably both. Whatever the reasons, I certainly have difficulty with this. It’s often hard for me to interpret the signals my body gives me to determine what it needs.

The most obvious way this shows itself is in how I respond – or rather, don’t respond – to the onset of fatigue. This wonderful ability to hyper-focus on the best things in life interferes not only with external signals, but with internal. The stereotype of the “mad scientist” who forgets to eat or sleep seems entirely plausible when you regularly “wake up” from deep focus to realise it’s 10 pm, you haven’t eaten yet and you REALLY REALLY REALLY NEED TO PEE.

The difficulty of ignoring or not recognising internal signals manifests in a variety of other contexts. My response to pain, for example. I’ve learned over the years that I’m probably hypersensitive to pain; but knowing this has led me to ignore certain signals that, with hindsight, I should have listened to. It takes me a few times running on a strained muscle before I’ll believe the thing is actually an injury that needs rest, rather than my body just making a fuss about nothing.

Yet another one for me is hunger. I have an enormous amount of trouble distinguishing between hunger and fatigue. When struggling with depression, I’ve curled up exhausted in my armchair of an evening with no energy to move, read or even cry – not realising the crucial point that, having taken no interest in my lunch or afternoon snack, my mood will lift exponentially if I could just get up and cook some food! But even at better times, I can often only tell by experimentation whether I’m actually hungry or if I need to zone out for a while.

A really annoying thing about hunger is when it strikes out of the blue. One minute everything’s fine, the next I’m shaking and weak, my stomach completely hollow. The feeling is absolute, immediate and all-consuming, such that I’ll stop whatever I’m doing as soon as humanly possible to look for food. Chatting with an autistic friend I wondered aloud why more people don’t act so driven when hungry. He postulated that perhaps their bodies are better at giving subtle signals, allowing them more time to act, before the need is urgent. My pragmatic solution these days is always to have a snack in my bag with me, just in case.

Mental fatigue is actually the one that causes me the most difficulty in everyday life. It’s really good to be able to focus intensely on my job, but work life doesn’t leave me much in reserve. Although there are times when I struggle to get focused on a task, in my first couple of years as a scientist I would regularly find myself absorbed until an hour or two later than I should have left the office. It wasn’t until I was completely exhausted that I’d “wake up”, suddenly, to realise I had barely the energy needed to get myself home. Once home and fed, with no down-time to recharge before bed, the next day would be a hazy blur of mental exhaustion. If I overstayed my hours on a Monday, it wasn’t uncommon to lose the rest of the week. In the end the only way I could break the cycle was to set an alarm on my phone, to distract my attention at the end of the working day.

And the flip side of mental fatigue, of course, is self-discipline – or at least, the appearance thereof. Although my focus, once established, is pretty much unbreakable, to achieve that state in an office full of people can be tortuous, and is often impossible. The level of effort needed to sustain these failing efforts is far above that which neurotypical people exert. But unfortunately, it’s often the number of hours spent at the desk rather than the actual work achieved which matters day-to-day.

Of course, these are just surface issues. I could spend many pages on the long term mental and physical health impacts of self-neglect. But that’s not where I am today 🙂

On the whole, I don’t really want to fix this. I’m happy with my hyper-focus. I do my best, most satisfying work when I’m fully absorbed, and not distracted by what my body needs! But it’s important for me to achieve a balance, maintaining my health and wellbeing enough so that I don’t crash and burn, and can continue to focus on doing what I love over the longer term.

Negotiating power

Very soon I will have to have a difficult conversation. I have to negotiate with someone whose current position is so diametrically opposed to mine that the two of us seem to be overreaching ourselves just trying to meet in the middle. I need that person on my side.

In the past, I’ve rarely bothered to negotiate for my needs. In my experience, just battling through a difficult problem or situation is usually easier than trying to get help from someone else. In terms of emotional input, it’s certainly less costly, although it can have unfortunate consequences for my wellbeing in the short term.

There are a few reasons I tend to deal with my problems independently. The main issue is the difficulty I have in approaching people and starting conversations. Often a problem seems self-contained – perhaps time-limited to just a week or two. I might feel that, within those constraints, I have a good chance of keeping things under control. Then especially if the best person to speak to is someone I’ve never met, or someone I know I find difficult to connect with, just the stress of approaching them is a huge investment that might not be worth the benefits. Perverse as it sounds, there’s also the added uncertainty. Sometimes it’s easier to commit upfront to a bad situation than it is to hope for better, and risk being crushed.

There are other, rarer occasions, when I do look for allies. When my time-limited problem has unexpectedly extended itself, or the immediate effects are just too dire. At that point, the problem is translation. Sometimes the person understands what I’m trying to tell them; and honestly, when everything suddenly and magically gets better (and it’s amazing how often that is the case), I wonder why I don’t do this more often. But if they’re not immediately supportive, I’m still more likely to back away into my shell than to try to bring them around to my point of view.

Over the past year I’ve been building a clearer, more strategic picture of my personal needs and vulnerabilities, so that I can anticipate where and how certain things are likely to go wrong. The idea was that if I knew when a situation was heading south, I could talk to the people involved, try to manage expectations, and maybe even get some help. It only half worked. I’ve learned a lot about situations that might go wrong for me, and am developing increasingly effective tools and workarounds to maintain my own personal wellbeing. But I can’t manage expectations, and I don’t have available in conversation the flexible emotional vocabulary required to persuade others to help me. So despite my efforts, and to my increasing frustration, those little everyday disasters that could so easily have been avoided just keep on happening.

Enter “difficult conversation”, looming ominously on the approaching horizon.

I’m very aware of the skills I lack which are crucial in real time negotiation. I struggle with self-confidence and assertiveness in articulating my needs. I don’t have the ability to think quickly and flexibly in real time. Under pressure, losing verbal fluency and desperate not to antagonise others, I will agree to almost anything rather than incurring judgement on my increasingly autistic communication style. Only later will I realise I can’t deliver on what I’ve promised.

The main things I’m thinking about to prepare myself for this conversation are as follows:

  1. Preparation. Preparation is key. I’ve spent a lot of time thinking about the parameters of this conversation and what I’ll need in order to communicate effectively. That’s before even thinking about the position I’m trying to negotiate for the longer term.
  2. Time. I almost certainly won’t be able to process all the necessary information in real time, in a way that allows us to move constructively towards a compromise. The fear of not getting what I need, reinforced by repeated experience of signing up to things I can’t achieve, will make me dig in my heels – and that kind of stubbornness could go badly for me. I’ve already requested to have more than one meeting, to follow up the issues and give me time to absorb the information before we commit to any kind of agreement.
  3. Expressing my needs. Communication is hard; emotional communication is harder. I’m thinking about how to use scripts or alternative forms of communication to indicate when I need a break or processing time. A friend suggested I could write some scripts on little coloured cards, like the ones you can get for exam revision or as presentation prompts. I’ll need to make sure the messages are agreed and understood in advance, as I won’t have words to explain them at the time.
  4. Self care. This meeting is utterly, unavoidably essential, but it’s going to exhaust me. I’ve arranged to take some leave and work flexibly around the negotiations themselves, so that I can focus all of my attention where it’s needed without worrying about working productively, operating sustainably or avoiding overload. There’s easy food for if (ok: “when”) I get home struggling to untie my own shoelaces. I’ll try not to get run over on the way!

Negotiation is complex; but as a helpful professional reminded me recently, I won’t get anywhere if I don’t ask. I don’t know whether any of this is going to work. I’ll let you know.

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?

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!

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.

Depression and overload: what does self care look like today?

Overload is one of the easier autism-related concepts to explain to a non-autistic person. Basically, it’s what happens when you’re just too tired to cope. Strangely enough, the vast majority of people are familiar with this concept!

The difference with autism is the reason for the overload. Often because of sensory processing difficulties, such as hypersensitivity to sound, bright colours or smell, the wrong environment can put an autistic person in a perpetual state of overload and exhaustion.

My understanding of my own sensory sensitivities and triggers is still in its infancy. With the recognition of my autistic identity came the framework for realising that some things I find difficult might not actually be my being fussy or demanding, but because I actually experience the world in a different way. Even with that knowledge, though, deciphering my sensory environment and the aspects that can send me home practically incapable of changing my clothes, let alone cooking dinner for myself after work, is an ongoing process.

At some point I’ll write a bit more about overload, recovery and how I manage those risks in the workplace; but that’s not where I’m heading with this post. This post is about choosing the right self care at the right time, and how that’s not always as easy as it looks.

As well as sensory overload, I’ve also struggled throughout my life with depression. Although I didn’t seek help until early adulthood, looking back, I was an awfully depressed child! I spent some time at university not being depressed, but my life has really been arranged since junior school in bouts of relative mental “wellness” punctuating a background of depression, rather than the other way around.

Now the problem is that the symptoms of depression and overload, on the face of it, look identical. But they’re different.

Consider…

You have to stop. Stop now and curl up somewhere quiet. Your brain just wants to cry. It’s hard to think, even to move. So you move slowly: to protect yourself, to conserve your strength. You can’t cope with anything more.

You cancel social activities. You stop going out. You restrict exercise to the routes you know, because you just can’t cope with the unexpected right now. It’s almost too much effort just to go out the door. You don’t enjoy the things you love. You just need to stop. Stop now.

And at this point I ask myself: which is it? Depression or overload? Is there too much, or too little? Is there just too much of the wrong thing?

What does self care look like today? Is it a quiet night in with the lights on low, with a book and a blanket and a hot drink? Is it a choir rehearsal: immersion in music until you can feel the sound in your bones; keeping up with instructions; singing under bright lights? Or is it an evening run in the fresh air? Can I risk being up late, or do I need that sleep more than usual? Am I moving too slowly to keep to a schedule? Do I need to protect my senses tonight, or stimulate them?

What are the costs of choosing badly? What’s on at work tomorrow – what could go wrong if I’m having a bad day? Who am I meeting with? Can I afford to risk it? Or maybe there’s something I’ve been looking forward to on the weekend. Is it really worth jeopardising that?

What did self care look like last night; last week; the week before? How many choir rehearsals have I now missed? Are there real things in the medium term, whether necessary or just desirable, that will be jeopardised by my not doing something tonight? Does it matter whether I’m broken tomorrow if the alternative is unpaid bills, or not seeing a good friend for a holiday this year?

I’ll know if I chose wrong. Overloaded me can’t safely drive: she can’t process the visual signals quickly enough. Depressed me can, and probably should – she just doesn’t want to go out. Overloaded me will suffer in a choir rehearsal. Depressed me will suffer if left alone with her thoughts. All the me’s can enjoy a good book, but depressed me will be restless afterwards, and overloaded me might not even be able to focus on the page. If not allowed to recover, overloaded me will be exhausted at work the next morning. If left to fester, depressed me will struggle to get out of bed. But none of these signals come before the event.

Right now I’m overloaded. Last night I wrote a list of things I couldn’t currently do, when I’d last been able to do them, and when I anticipated being able to do them again. I looked at the list and realised I had bills piling up because I’d not been able to pull myself together to read the meters. I realised that the next time I expected to be able to make a financial decision involving more than a grocery shop wouldn’t be for another week or three. Not making that decision has implications, as does making the wrong one. So today I know that self care looks like clearing my schedule and asking nothing of myself but to fix up those bills, and maybe by the end of the day my head will be clear enough to think about finances. Sometimes it’s that easy. Sometimes it’s not.

It’s an interesting dilemma, when you’re not in the middle of it. I wonder: what would you do?