Existential change and the importance of routines

For autistic people, change is hard. Sometimes good, but always, desperately hard. I’ve written about this before, in terms of how I manage the short term effects. But I wanted to devote some time here to exploring how change actually feels from my autistic perspective.

To understand the impacts of change, you need to appreciate the importance of routine. Routine is a huge part of my existence. All of my “adult functionality” – shopping, cooking, cleaning, paying the bills – is built upon a broad supporting framework of repetitive tasks. My routines are the rocks and scaffolding of my life: stable; affirming; immutable. They’re intrinsically entangled with my sense of external reality. Routines are the tethers that anchor me to the outside world.

Most days when I get out of bed, I follow the same routine. There is always breakfast, with delicious milky coffee. There is always a shower. On weekdays I switch on the radio and listen to the news while I get ready for work.

The job I do has very little formal structure, so I’ve had the space to develop my own routines, which fit me as comfortably as a favourite pair of jeans. I walk to the office by the same route each day, and go up the same stairs to the same desk, which is laid out clearly with everything where I expect it to be. At lunch time I go for a run or gym class, and afterwards eat my sandwiches quietly at my desk while dealing with emails. My evening routine can be different each night, but always involves dinner, planned carefully in advance to be preparable within the time available. It’s hard to make those decisions after a day in the office.

On weekends I try to relax and let things go. I don’t always decide in advance where I’ll be for lunch or what I’ll have for dinner. But I always have breakfast. And there is always some sort of plan.

The days when I don’t plan are empty days. Sometimes I read; more often I write. I lose all sense of time. I eat when I’m hungry and sleep when I’m tired. There is no news, no voices on the radio or phone – rarely does anyone share my empty days. These are the beautiful, lost eternities that I spend in the labyrinth of my own mind. The empty days are the reason I know that routines are just my way of navigating a strange, Escher-like world.

When routines are the tools you use to give shape to the confusion and chaos of life, then change can be dangerous. Not all change, oddly enough; but predominantly the changes that interfere with established routines that keep me grounded and functioning. If I know about a change in advance, I can identify the ways it might disrupt my routines and carefully work through how they need to adapt. Sometimes, though, that doesn’t happen.

The extent of the distress caused by unplanned disruption can be difficult to believe unless you’ve experienced it yourself. I’d like to illustrate with an example. My workplace has made a lot of changes recently, which included within the many details a modification to office protocol advising people not to eat lunch at their desks. This is something I do frequently, since I’ve often been for a run, and I can use the eating time to get focused on what’s coming up that afternoon. And having food on schedule is a big deal for me. But amongst all the other changes I’d meticulously prepared for, even I had completely overlooked this as trivial. So the moment I realised this was an issue was when I sat down at my desk after a run one day. Run ragged and disoriented by the disruption going on around me, it dawned on me that I was hungry and hadn’t eaten. But I wasn’t supposed to eat at my desk. This was email time and food time, but they couldn’t happen at the same time any more. And there were other constraints on my time. Time. Food. Emails. My brain just stalled.

And I actually considered not eating the food. Because that was easier than breaking the physical routine of being at my desk at the right time, checking my emails and trying to herd my scattered thoughts into the space of an afternoon.

(I have some sense. I know how strongly not eating correlates with meltdowns. I ate the food.)

One example, but illustrative. A small change in the wrong place, unexpectedly disrupting a routine, makes everything harder. When the disrupted routine is one involving a basic need – food, rest or sleep – then that basic need is likely to be neglected. In the presence of any external pressures, in a life already warped to fit an alien world, the rapid spiral downward can be hard to control.

I am not averse to change. In fact, I strongly believe that change is necessary. Not for its own sake, but as a part of learning and growing and living life to the full. Whatever I believe, though, it doesn’t make the process any less painful.

Do you see what I see?

Do you see?

Do you hear the two-toned rhythm of soft soles on concrete, every step, as you walk towards the station? Do you see the lines of the pavement before your feet: every crack a poem, every stain a story? Do you fear that if you look up, you will lose yourself in the world?

Can you feel the scarf around your neck, scratching your skin like sandpaper even as it screens you from the cold? When you free yourself and settle in your seat, it is sweet and warm relief. Is it soft between your fingers as you stroke its tassles?

Do you hear the low song of wheels on rails, noise living in the comfortable space between puppy whine and growl? Do you recognise the note?

Do you hear the quiet couple whispering and laughing, soto voce, at the far end of the carriage? When the woman in your section answers her phone, do you catch the voices at the other end? Can you follow every word?

Do you feel the train straining to slow as it slides into the station? The strong, inexorable pull of your body, onwards and forwards? The world warps and bends on the edge of a precipice, unbearable as night; until with a sigh the beast lurches backwards, resting on its haunches, and is still.

When you walk out into darkness, can you taste the sweetness of the night – of rain on grass? In the pristine stillness of the morning, can you smell the spring?

Do you see the colours of the world in concert; red and blue and green dischordant, violent in their brilliance?

Do you see?

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.

Liebster Award!

liebster.png

Many thanks to AutiWomanDifferentBox for nominating me for my first Liebster Award! AutiWomanDifferentBox writes a frank and approachable blog about living and working with autism and the inevitable anxiety – a bit like me, but with a very different job and refreshing perspective. We’ve exchanged some comments that I enjoyed and learned from. Well worth a read.

So I have to admit, coming home last Friday evening and having this message in my inbox my initial feelings were mixed. Definitely a rush of “yay, somebody likes what I’ve written and thinks it’s worth sharing! Very happy and must thank this person!” But also just a hint of “oh God, somebody paid me a compliment – what do I do? And this is a new thing, and it’s a social thing, and there are probably rules, and oh my God what if I fuck this up?” Because I am not very good at new social things! So this is my excuse as to why it’s been a few days … or maybe a week 😮 … sorry about that.

Back on topic: the Liebster Award is all about sharing good blogs, which are still quite small and new, to help them increase their readership and following. The quoted limits vary depending on who you read; I’ve tried for blogs with fewer than 1000 followers. It works (roughly) as follows:

  1. Someone nominates you! If you choose to accept, thank them and link to their blog. Maybe give it a little review as well, if you’re so inclined 🙂
  2. Display the award on your blog (optional, but fun – I found a few nice images here)
  3. Answer the 11 questions the blogger gives you
  4. Nominate 5-11 small bloggers who you think are deserving of the award
  5. Let those bloggers know you nominated them
  6. Give them 11 questions of your own

The 5-11 is a variation on what I was sent. AutiWomanDifferentBox specified 11, but I don’t read very many small blogs (yet), so would rather focus on the ones I already know and love.

So here we go!

Answers to questions

  1. Please sum up your blog in 10 words?

    I had a really long think about this – there are so many options! – but in the end I couldn’t come up with anything better than my blog tagline: “Living and working with autism in a non-autistic world”.

  2. What are your four favourite songs?

    This is very difficult to answer, as music is such a huge part of my life, and my “favourites” depend so much on my mood. But here are a few different mood favourites: “Sun in the Night” (Lighthouse Family), “Don’t Stop Me Now” (Queen), “Sleeping Sun” (Nightwish) and “Comfortably Numb” (Pink Floyd)

  3. What four things would you get rid of from the world? (try go for more trivial/fun things like beards, just as an example, not all saying world hunger we all want to get rid of that)

    Spiders; the “hold” music on company phone lines; television adverts; and Microsoft Windows!

  4. Would you prefer to have the ability to teleport or the ability to fly?

    Definitely teleport. For one thing, I’m afraid of heights. But mainly because I don’t like travelling – especially having to travel overnight. I’d visit a lot more places if I could teleport.

  5. What animal would you be?

    I’m not sure. I think maybe I’d be an owl. They come out at night, when it’s dark and quiet; and they can rotate their heads almost all the way around. That’s pretty cool.

  6. What possession (not person) do you cherish the most and why?

    I’d love to answer this in detail but it would completely give away my identity … but I can say it’s a soft toy animal. I’ve had him forever, and he keeps me safe when no one else can 🙂

  7. What scares you the most?

    Power that other people have over me.

  8. Which is better breakfast, lunch or dinner?

    Breakfast is absolutely the best! A really big breakfast washed down with delicious milky coffee means I’m going to spend a long day doing things I love. On cold dark winter mornings, a bowl of hot porridge wakes me and warms me and makes me feel human again. And the best bit is that because I get up relatively early, there are almost never any competing requirements – so a relaxed breakfast is one of the few utterly immutable fixed points in my daily routine. Dinner might involve more exciting food, but breakfast wins hands down.

  9. If you could be a fly-on-the-wall in any time period, anyplace, viewing anyone where, when, who, why would you be a fly-on-the-wall for that?

    There’s a book I really like called Two Sides of the Moon. It tells the story of the Space Race from the parallel perspectives of American astronaut David Scott, and Russian cosmonaut Alexei Leonov, who was the first man to walk in space. The American side of this story is all over the place, but it’s a rare thing to get a glimpse of the Russian side. Where I’d love to be a fly on the wall is inside the airlock on Voskhod 2, just before Leonov stepped outside the spacecraft, and watch him make that little piece of history.

  10. What would be your superhero power? Feel free to make up one doesn’t have to be traditional.

    I’d like to be able to read minds at will.

  11. If you made an autobiography what would you call it? It can’t be your blog site name.

    I can think of many good candidates, but all are recycled from poems or books. Building original things with these sorts of words is not my forte. I might try: “How it looks from here”.

  12. My nominees

    In the order in which I discovered them:

    New questions

    1. What is your favourite book or series?
    2. Which city in the world would you most like to visit, and why?
    3. What do you love most about having autism / Aspergers?
    4. Coffee or tea?
    5. Did you have a childhood hero or role model (real or fictional)? If so, who was it, and why?
    6. How does music make you feel? (If this is too broad a question, you could answer about your favourite song or piece, or one that has a particular emotional resonance.)
    7. What’s your favourite way of relaxing after a hard day?
    8. T-Rex or dragon?
    9. What is the most ridiculous contradiction, paradox, or crime against logic you have ever encountered? (Eg Windows clicking on “Start” to shut down…)
    10. Would you rather explore the deep ocean or outer space?
    11. How long would you survive the zombie apocalypse? Justify your answer!

Wasted words

In my last post I talked about some of the things I wished my neurotypical peers could understand and accept about me. The post was intentionally light-hearted, but it reflects an intense desire on my part: the wish that people around me could occasionally see past my “unusual” behaviours, listen to what I have to say, and maybe even catch a glimpse of the person I really am. From what I’ve read, this is a dream shared by many autistic people.

But communication goes both ways. I written before about things I do automatically that might seem rude or hurtful to a non-autistic person. These “odd” behaviours are documented throughout the autism literature, always as negatives or in mildly pitying terms. Officially, they’re encompassed in the triad of impairments – since the majority retains the right to define what is “normal” and what is an impediment. What seems to be less well understood, though, is how rude and hurtful some of the non-autistic social behaviours can be when seen from an autistic perspective.

A thousand examples spring to mind. Lying, for example. The amount of non-autistic communication that’s made up of lies and half-truths just staggers me. How is it not the most offensive thing in the world to be constantly lying to someone? And how are autistics not in constant demand as literally the most honest and trustworthy people in the world? But I’ll leave that for another day.

My current beef with neurotypical interaction is something they call “throw-away remarks”. These are words or phrases that people say which they claim, apparently with complete sincerity, don’t mean anything. Just words. And this I do not understand.

Perhaps it is part of my “deficiency” in small-talk – another form of indirect communication through words that mean little or nothing in themselves. But there is a subtle difference between small-talk and throw-away remarks. Small-talk, taken in context and together with other information, is the padding that supports neurotypical communication and relationships. Throw-away remarks on the other hand, as far as I am told, are only there to fill the silence. The difference in subject matter, I suppose, is just an unfortunate coincidence.

You see, I am not wasteful with words. So when I am described as rude or insensitive, it happens in very specific types of circumstance. Most often it’s in association with an idea I’ve analysed critically, which someone takes as an insult to their intelligence or authority. Sometimes it’s because I’m barrelling on with a monologue or directing the conversation, not recognising that another person is uncomfortable or trying to make a different point. Even asking a question too directly can cause some people to take offence. Making personal judgements, however, is not in my nature, and when I cause offence, it is never because I have made a personal remark that is derogatory towards another individual (joking aside – I can banter as well as the next man!). In what is claimed are “throw-away remarks”, this sort of personal judgement is commonplace.

From my perspective, the difficulty with these offhand phrases is that they do have meaning. It may not be conscious, but the words that people throw out in those careless moments reflect quite starkly their underlying biases and prejudices. In a world which it seems is almost constant in the practise of deceit, those little words are in themselves a window to the soul. And what an ugly thing it seems to be.

I encounter this behaviour with something between amusement and pain. Obviously when someone makes an offhand personal comment about me – particularly about any “work-related social skills” – it can be deeply upsetting. But honestly? I am perplexed. It is faintly ridiculous to me that, in a world that ties itself in such terrible knots about tone of voice and conversational balance, someone actually saying direct, meaningful words that are blatantly prejudiced and offensive can brush them off with an “oh, it was just a throw-away remark – it didn’t mean anything” – and that that’s totally OK! It’s accepted. Those are the social rules.

I just cannot get to grips with this concept. Why would you use those words if you didn’t mean them? Since the only person who gets hurt by my being offended is me, I do try not to take this behaviour personally. But still.

All words have impact. And there are times when I would dearly love to say to these people: if you can’t take responsibility for the consequences of your wasted words, then maybe you should learn to enjoy the silence.

Talking Aspie: a beginner’s guide

I’ve been thinking about writing this post for a while, but it seemed appropriate to save it for Autism Acceptance Day 🙂

So a while ago I saw this post on Autistic Not Weird asking: if you could teach people one thing about autism, what would it be? The answers are many and definitely worth reading.

Having been too late to answer Chris’ question, when I tried to think of one thing I’d want to teach neurotypical people about autism what came to mind was my own model of autism as a “different language”. It’s not just a difference in how we use words, but the way we think and feel and our whole experience of the world. This “different language” model is one that I’ve used to accept my diagnosis and build an understanding of neurodiversity, using descriptions of how I differ from the “norm” to reconstruct what that unspoken “norm” might actually be! So the one thing I’d love to teach people is how to begin to translate between those two languages, and recognise in the process that “autistic” does not mean less than human.

Here, then, is a light-hearted look at some “translations” I’d love to teach the neurotypicals in my life, particularly those who might one day become my friends:

Level 1: basic style

What I do: Volunteer the answer to a simple question.
What you think: God, she’s arrogant!
What it means: I am providing information in support of a common goal.

What I do: Ask a straight question.
What you think: This is a challenge to my authority! I must defend myself!
What it means: I genuinely do not understand and am trying to clarify. (Unless you are obviously being obstructive. In which case, yes, I am challenging your authority. That is also a thing.)

Level 2: simple behaviours

What I do: Don’t look you in the eye when I’m talking to you.
What you think: Is she lying to me?
What it means: I’m finding this concept hard to put into words, and looking at your face is distracting me. I need to focus all my attention on translating the message.

What I do: Write while you are talking to me.
What you think: Is she listening to me?
What it means: I think what you’re saying is really important, but I can’t process your words right now. I need to write them down so I can look back at them later.

What I do: Stare dumbly at you in response to a question for an awkwardly long period of time.
What you think: … OK… what now … ???
What it means: option 1: You’ve asked a good question and my brain is working hard to find the right words to respond.
What it means: option 2: There is no right answer* to your question and I am now literally paralysed with fear. Congratulations!

* Where “no right answer” means the truth is not diplomatic, and the diplomatic answer is too wrong to be utterable, but I do not know you well enough to risk causing offence.

What I do: Keep quiet at team coffees / social pub visits.
What you think: She’s unapproachable and standoffish. She never makes the effort to get to know anyone.
What it means: I have auditory hypersensitivity and struggle to maintain conversations in a noisy setting. On top of this, I struggle to follow subtle conversational cues such as when it is my turn to speak. If there are more than 2 people at the table, I’ll likely either talk all night or I won’t get a word in edgeways.

What I do: Talk rapidly and excitedly about a single topic with no regard to the people around me.
What you think: Is she not getting the message that I’m not interested?
What it means: I am really really excited about this topic! WAY too excited to get your message! And you did ask…

Level 3: complex social behaviours

What I do: Agree to come to your birthday party, then pull out at the last minute.
What you think: This is important to me but she doesn’t care. Evidently she doesn’t like me very much.
What it means: I know it’s important to you – believe me, that’s the only reason I agreed in the first place. But now it’s Friday night, I’ve walked into two lamp-posts on the way home and am currently choking on my dinner. Stimming visibly in a noisy pub for 4 hours while tripping over stilted small-talk is the best case scenario here.

What I do: Refuse an invite to the pub tomorrow night, even though we both know I’m free.
What you think: I guess she’s not interested in being sociable.
What it means: BUT BUT BUT IT’S NOT IN THE PLAN!!!

What I do: Occasionally invite you to an activity with me.
What you think: I haven’t seen her in ages. She never makes time for me. Where did this come from out of the blue?
What it means: I need to spend lots of my time alone to recharge, but I still want to spend time with you. I have spent weeks thinking about what you might like to do and building up the courage to approach you. This is me trying to make friends.

What I do: Rarely talk to you.
What you think: She isn’t interested in getting to know me – I guess she has other friends.
What it means: I have precisely two scripts for initiating unstructured conversation, in only a few permitted social contexts. A lot of things have to come together for this to work out! Trust me, if I weren’t interested in getting to know you, you wouldn’t be hearing from me at all.

And the bonus level …

What I do: Occasionally talk to you, and you are a single man.
What you think: She’s really interested in me!
What it means: I’m really not… I want to make friends. This is how I make friends. OK?

Some of these I suspect will be specific to me, but perhaps a few are applicable to others on the spectrum.

My fellow Aspies / autistics – what would you add?