The End of the World – #Autistic December 3/31

The End of the World – #Autistic December 3/31

A child sat on a lawn holding a piece of a broken stick in each hand and crying

“It’s not the end of the world,” my mum used to say as I cried inconsolably over something that most people would regard as trivial. Perhaps someone else took the particular cookie I’d fixed my eyes on, or the books I’d carefully lined up had been dusted and moved.

The thing is, when you’re autistic and you’ve got an idea in your head about the way things will be, anything which disrupts that expectation does feel calamitous. The certainty we were relying on has fallen in ruins. It literally is as if the world shattered under our feet.

When people try to console us by “putting things into perspective” it can actually make it much worse because they are demonstrating a lack of empathy: they’re projecting their perspective onto us, and it doesn’t match our experience.

For many autistics, having a predictable environment is very important. We need our routines so we can feel at ease, and when we go outside our usual bounds we like to know what to expect in advance: to be prepared. When I go to new places I research beforehand so I know the layout and how it looks.

I’ve learned to manage my expectations up to a point but I don’t always succeed, and when something doesn’t turn out the way I thought it would the blow can be crushing. The feeling is so intense that I can’t see past it and be objective. It might as well be the end of the world.

Do Not Disturb My Circles

Do Not Disturb My Circles

I’m not very good at planning ahead, considering consequences of my actions. I exist in the present and the past; the future is too abstract to engage with. This is an executive function deficit. I am poor at planning and organizing my life, and cope with this by relying on routines. Running round the same circles day after day.

Μή μου τοὺς κύκλους τάραττε! — Ἀρχιμήδης
(Do not disturb my circles! — Archimedes, popularly supposed to be his last words)

This works well enough under normal circumstances, but a recent change in my life — gender transition — has disturbed my circles, my routines. The old familiar sequences I used for years as a male to get ready for work in the morning are no longer completely applicable to me as a female.

When I don’t have an established routine in place it takes me a long time to complete a task. I spend more time thinking about the various steps I need to complete than I do actually completing them — like I said I’m not good at planning. Every step along the way between getting out of bed and leaving home to go to work must be consciously considered and executed.

More than that there is a feeling of unease, of insecurity. Having no routine to rely on means I constantly view it as an unfamiliar situation, and the unfamiliar makes me anxious. Anxiety makes it more difficult to think clearly about what I am doing, makes it harder to plan what steps I must take.

When I have a routine I do not need to think about what I am doing: force of habit guides me through the sequence of steps effortlessly. I refer to it as being “on autopilot”. And like an autopilot I am unable to handle the unexpected: changes. Those times when the pilot must step in and take manual control.

For over two months now I have been struggling to establish new routines to replace the old ones. It is a slow process, requiring a patient, incremental approach. But I am getting there. The components that will build my morning routine are becoming established, steps are being aggregated into short sequences. I am now at the stage where I can start to join these components into a seamless whole.

It still took me over two hours to get ready this morning, with about an hour of that being spent thinking through what my next moves should be: this is progress. I believe that within another few weeks I will have learned my new routine and will no longer have to think about what I am doing every morning. I will be able to cope again.

My new circles are close to completion. I hope nothing disturbs them.

Anxiety: Learning to Cope

Anxiety: Learning to Cope

Nobody Home?

It’s the strangest feeling, or it would be if it weren’t so familiar. I catch myself playing the part, acting “normal”, carrying on without conscious intervention while all the time I’m there, watching. I feel like a spectator in my own body, a mere passenger.

I remain aware of everything around me, fully linked to my senses, but my mind is free-wheeling, pursuing lines of thought unrelated to what my body is doing. And every so often I notice that my body has been walking around, even talking to people, while I’ve been occupied with my thoughts.

Role Playing

I guess it’s a form of acting: I’m performing a role that I’ve rehearsed so thoroughly I don’t need to think about what I’m doing, leaving my mind free to wander. This is the state in which I’m most at ease: there is a comfortable familiarity as I run along the rails of routine.

Am I a Stereotype?

The trouble is… as I watch myself I wonder whether I am being myself or whether I am merely exhibiting a set of learned behaviors with the aim of fitting in. What makes me suspect this? I get little nudges from my conscience – a feeling that I should be, say, flapping my hands or talking at length and in detail about some topic of personal interest. Things I used to do as a child but have suppressed as I’ve grown.

Since discovering that I have Aspergers I have become more aware that a number of things I used to do instinctively were characteristic of the condition. I see my innate Aspie traits on one side of a balance with my acquired “normal” traits on the other, and as one side rises into prominence the other side sinks from view. I’ve been feeling more and more that I am out of balance and I need to take corrective action to restore the equilibrium.

I’ve found that whereas in the past I had been led into thinking of my differences as aberrant behaviors to be corrected, I now consider them to be natural aspects of the way I am. I have accepted that I’m different – and the reasons underlying that – and I try to be more myself rather than struggling to “act normal”. That said, there are some areas where my instinctive reactions are a hindrance to living independently: it’s not possible to go through life without interacting with strangers at some point.

Identity and Self-confidence

My sense of self – my identity – is moderately strong: I know who I am and my core values are well-established in my mind. I might not always have the strength or confidence to actively uphold them but I find that I am incapable of acting against them. My self-confidence on the other hand varies according to the situation from bulletproof to non-existent. And that’s where my anxiety creeps in.

The Sum of All Fears

First a bit of background: there is a psychological theory of learning usually referred to as “The Four Stages of Competence”. Briefly, the four stages are:

  1. Unconscious incompetence where you are not aware of your lack of a skill.
  2. Conscious incompetence in which you become aware that you do not understand or know the skill.
  3. Conscious competence which is having the knowledge but not grokking it: knowing a sequence of steps and able to follow the sequence but without fluency. One still has to think heavily about the task.
  4. Unconscious competence where practice – rehearsal – has made the skill so familiar that it has become habit and little or no conscious effort is required to perform it.

What I described at the start is stage 4: I’m doing things that are so familiar I don’t have to think about them and my conscious thoughts can drift off. Problems arise for me at stages 2 and 3 where I come face to face with the unknown.

When I am faced with a situation that is unfamiliar or where I can’t predict what turns events may take I become anxious. I lack self-confidence in my ability to perform the task, whether it is making a phone call or interacting with strangers. I know I can manage well-defined, structured interactions such as ordering a pizza or going to the doctor because I have become familiar with the routines involved: I am around stages 3-4 in those cases. But with something that is off-the-wall where I would have to react according to the context I find myself back at stage 2 where I am all too aware that I don’t really know what to do.

Breaking the Circle

At the moment I find myself trapped in a vicious circle where I have evolved strategies of avoidance when faced with anxiety-inducing situations. This prevents me gaining the experience to deal with similar situations in the future, and results in greater anxiety if I can’t avoid them. I recently raised this problem with my GP and I’ve started a course of therapy to try to manage my fears so that they don’t continue to be an obstacle to me doing things.

Square One

One of the first tasks has been to analyze the roots of my anxiety: what triggers it, what is it I am afraid of? Many people have a fear of judgement: what will the other person think of them? But that’s not it for me. My core fear is of failure, of not being able to complete the task. Fears of this kind in particular can affect people who grew up with a “gifted” label as I did. A lack of experience of failing makes any failure, however small, appear catastrophic. This leads to risk aversion, a strong drive to avoid the possibility of failure. Perhaps if I can learn to accept failure than I will be able to attempt things where I lack confidence. I can hope.

Eating (dis)Order

Eating (dis)Order

I came across this post by bunnyhopscotch and it made me think about my own eating habits and preferences. While I don’t consider myself extreme in these regards I am aware, because of frequent comments from my wife in particular but also from my mother when I was growing up, that some of my behavior is unusual.

Order and predictability are very important to me – I like to know what to expect in advance and I hold a mental image of these expectations. If the reality is significantly different then that causes me to react – this can range from a mild disappointment to a full-blown meltdown. This is very difficult for non-autistic people to understand: many of them enjoy surprises and find repetitive experiences to be exceedingly dull. I’m not that way; I enjoy the comfort of regularity, of familiarity. If I get exactly what I was expecting then I could not be happier.

One of my favorite meals is spaghetti bolognese; whenever my wife asks me what I would like to eat that is the answer (I don’t know why she bothers to ask unless it is in the hope that one day I will say something different). She gets bored preparing the same meal so often, with no variation in the method or ingredients. I would happily eat this every day – the longest I have managed was to have it for every meal for two weeks before she refused to serve it again on the grounds that she was sick of the sight of it! (I had chilli instead the week after.)

The paradoxical thing is that I am not a fussy eater: there are very few things I will not eat and I do not have any food allergies or other digestive trouble that would restrict my diet. What I do have is a fairly rigid set of routines around eating. I’ll start with the arrangement of the food on the plate – all the individual elements must be separate and any sauce or gravy can only be poured over certain items. Gravy on sliced meat, roast or mashed potatoes is good; on sausages, chops and steaks, greens or most other vegetables is bad. I don’t like different elements to be mixed on the plate – it’s not good if, say, the peas get mixed up with the carrots.

I will also generally eat the parts of the meal in some order. Non-potato vegetables are always first, starting with the small, numerous items such as peas or corn. Then would come larger items: cauliflower cheese or mushrooms, before getting on to the potatoes and finally the meat. With meals such as chilli and rice (uniformly mixed together) I have a different approach: I will start at the edges, squaring the shape, and work inwards towards the middle maintaining that shape with its straight sides; mashed potato is the same.

There are other things: bread and butter must be in whole slices and if stacked the buttered sides must be together. Any cutlery accompanying the meal must not be in contact with the food prior to me starting to eat. Except for bread/salad and condiments there must be no combination of both hot and cold items on a plate.

I’m also a little unconventional in my use of cutlery. As much as possible I will use only a fork or spoon, held in my right hand. I transfer the fork to my left hand if I need to use a knife – I can’t use a knife with my left hand – but will put down the knife and pass the fork back to the right when I’m done. I need to keep the cutlery clean as I’m eating which means I have to put the fork or knife into my mouth or lick it to remove any visible food – very delicately in the case of a sharp steak knife!

This last habit – putting the knife in my mouth – raises my wife’s hackles every time she sees me do it. It turns out she was taught that this is ill-mannered. Trouble is, not doing it puts me on edge because then the knife is dirty, so I can’t win. In general my wife is pretty good about accommodating my “peculiarities” where food is concerned, but she will keep on about the knife in mouth thing.

There are other little things but I’ve covered the main points here. From the outside I have been informed that my eating habits appear restrictive, repetitive or downright strange but from my side it is simply the way I am – I’ve always been like this so I don’t know any different.

Breakdown Timebomb

Breakdown Timebomb

Handling strong emotions is extraordinarily difficult. Trying to keep them under control – rein them in – is like trying to close a suitcase packed with so many clothes that they threaten to burst out from every side.

I am caught in the currents of my feelings, one minute floating calmly and the next being pulled under by the rip tide or whirled around in a maelstrom of despair before sinking down in darkness. The illusion of control lies shattered around me as I huddle fetus-like in the middle of an barren landscape, no feature to break the monotonous emptiness fading to the horizon in every direction. Out here there is only loneliness. No sound. No breeze. Nothing moves, not even me. Yet within my mind nothing is still: huge, demanding thoughts and emotions slug it out in a battle for my attention while I struggle to avoid being overwhelmed.

And then, as softly sudden as the bursting of a soap bubble, the turmoil subsides and I experience a period of relative calm.

I feel the need to escape – a basic animal instinct to flee from threat. But there is no path to the place that draws me because it exists only in my memories, in the past. An illusory golden history, a carefree time of happiness. An amalgam of times and places synthesized into idyllic fantasy. Such a temptation!… to slip away into this perfect dream world.

A number of factors have likely contributed to my current state of mind but they all boil down to one thing: change. Too much has changed and is changing in too short a space of time and it all pushes me out of my comfortable routine existence into an unstable, unpredictable, disorientating state of uncertainty and confusion. I’ve not been sleeping well as a result, compounding the problem with tiredness – I feel tattered, ragged, frayed, worn out.

Please, somebody stop the world. I want to get off – I’ve had enough of this ride.

Driven To Distraction

Driven To Distraction

Last week I returned to work after the holidays. I find that breaks like that in my normal routine unsettle me and it has taken a week to get back to normal. The problem is that feeling off-balance makes me particularly susceptible to being distracted when I try to concentrate on the job in hand.

Little things such as the noise of the air conditioning and computer fans, people talking – however quietly – and especially interruptions just build up, one upon another, until my mind is a jittery mess and I can hardly think straight, let alone concentrate on technical matters. And as for achieving a state of flow, well that’s nigh impossible! I find myself frequently switching from one task to another and forgetting what I was doing only ten minutes ago. Needless to say my productivity is none too high.

All I can do is go for a little walk or sit somewhere quiet for a bit while I regain my focus and calm down. It just takes time to settle down into the familiar old routine again – about a week in this case – before I’m back to my old self and able to block out the various distractions. I no longer hear the AC fans, I don’t notice as people walk past my desk and I can enter flow with my old facility.

It is a simple matter of regaining my familiarity with my surroundings; of picking up the old behavioral habits. It seems strange that in only a week and a half away from the place I have suffered such disruption to my regular patterns of behavior, but the Christmas and New Year period is a challenging time to get through because changes affect almost every part of my daily life. Regular events such as the darts league are in recess, I see people out and about at unusual times of day because they are not at work either.

The relief I feel when life returns to normal, running along its rails according the the usual schedule, is immense. The predictability – knowing what to expect and when – literally takes a load off my mind. Not having to cope with random changes means I spend much more of my time near my ground state instead of being constantly excited into an energetic, exhausting state by all the irregular stimuli.

Distractions appear in many forms but they all take effort to handle. Above a certain rate of incidence this effort saps my energy to the point where I cannot cope with any further cognitive load: overload. It happened a few times over the past two weeks that I just had to take some time out to relax and rebuild my strength. So I am glad that the holiday season is past. Despite having some enjoyable times it is overall just too much like hard work.

Creating New Routines

Creating New Routines

Why isn’t there some standard schedule of household chores? My wife is going to be laid up for some time after a recent operation so I’m taking on as much of the cooking, cleaning and general housework as I can find the time to do alongside work and looking after her. Or trying to…

The trouble is that housework is not one of my usual routines so I have trouble remembering what needs doing. Also, unlike my wife, I can only focus on one task at a time – for example, I can’t leave the washing to do some dusting because I’ll forget that the washing was in progress. I need to build these tasks into a routine so that I can perform them automatically, without needing to consciously supervise myself throughout.

This got me thinking – what are the obstacles that make doing these things more difficult for me than, say, developing software? Right up there has to be my memory problems. I can recall technical information relating to my job without any issues, navigating through millions of lines of code as easily as finding my way to the local shops. But I have lost count of the number of times I have poured the water into a cup of tea, left the room while it steeps and completely forgotten about it until my wife asks where it’s got to. I’ve also been known to go into another room to fetch some item only to have forgotten what it was by the time I get there. It’s the same with any non-routine task – if I step away from it to do something else, more often than not I will forget what I was doing. It seems to be only my short-term memory that is affected in this way.

So how can I create new routines so that I get these tasks done efficiently? My first thought was to create a full schedule, but I realised that this would require more detailed information regarding task durations and frequency of repetition than I possess, and would be too inflexible because of ad-hoc demands on my time. So then I thought about just making a checklist of tasks that need to be completed, perhaps with deadlines where appropriate. I think that’s the method I’ll try first – I need a way to organize myself and to-do lists generally work for me. I use them at work – along with decomposing tasks into manageable chunks. This is a common technique, breaking a large task down into smaller sub-tasks, that I use at work, first to estimate how long a particular software development project will take and then to structure my approach to the task. It also helps a lot when faced with a huge job that daunts by its very size and complexity. Breaking it up into small pieces allows me to focus on each individually and keeps me from trying to fit too much detail into my mind at any one time.

Once I’ve run through the sequence of jobs a few times I believe I’ll get used to the pattern and – as if by magic – a new routine will exist. Sounds simple, but I’m sure there’ll be some difficulties – I’ve got a feeling that some of these household jobs are ones that get done as and when they are needed rather than according to a fixed schedule like “mop the kitchen floor at 7pm on Tuesday evening”. I wish I knew how my wife coped with it all – it just seems so complicated and time-consuming to me. I’m amazed that she could manage it all without any written plan.

Routines are Comforting

Routines are Comforting

Routines are a necessary part of my life – adherence to inflexible routines is one of the more common characteristics of Aspergers and other autism spectrum disorders. They serve a purpose in that they reduce my anxiety level by making me feel comfortable through familiarity – I don’t handle change well. Any change – an interruption or obstacle that prevents me carrying a routine through to completion – causes me stress that can overload me, triggering a meltdown.

I have learned to cope with some small variations in my routines without suffering much more than discomfort – a sense of uneasiness. It’s the same sort of feeling I get when I notice that books are not arranged in order. However, major upheavals will almost always set me off.

Some of my routines take the form of a fixed sequence of actions, others are behavioural rules. An example of the former: I always wash parts of my body in the same order when I shower in the mornings. A behavioural rule: after I get up in the morning I can’t eat or drink anything until I’ve brushed my teeth. (These are just two examples – I’ve got plenty more and they’re not all related to personal hygiene.)

Most of my routines either take place in the privacy of my own home or are small and unobtrusive, generally escaping notice by people around me. For example, at home I have a particular knife and fork that I always use. A more public example: when I arrive at my desk at work the first thing I always do is place my phone in a particular place on the desk, remove the USB cable from my pocket – always the left trouser pocket, uncoil it, plug one end of the cable into my PC and then plug the other end into the phone – a small routine to be sure, but a routine nevertheless.

My inflexibility also shows when something I am expecting to happen either doesn’t, or happens in a different way. It might be that my wife has asked me what I want for dinner, I’ve said something such as pasta – having a quite specific picture of it in my head – and when I get home she’s cooked something different. You can pretty much guarantee it will be a very nice meal – she’s a talented cook – but I won’t enjoy it much because it wasn’t what I had in mind. I’m still learning how to deal with this one (ten years and counting…) and I think I’m getting better at it – sometimes I’ll be very specific about what I want and other times I’ll deliberately have no expectations. Avoiding the cause of the problem is easier than handling the end result.

Eating is another good example of my repetitive behaviour – if left to my own devices I’d most likely live off spaghetti bolognese for the rest of my days – I could happily eat the same thing for every meal, every day of the year. I don’t get bored of that, unlike the average person on the street. In fact the regularity, the predictability, is reassuring and comforting. It all ends up preventing or reducing my anxiety.