Tag Archives: aspergers

Chronoception

Chronoception

chronoception: the sense and perception of time.

Time perception is one of those things that’s so taken for granted, it’s really difficult to actually explain or talk about. Time doesn’t seem like something we perceive or interpret, it’s just seems like something that is. But of course it is something we interpret, because we interpret everything, because that’s what it means to be a brain living inside a meatbag.

Chronoception is also strange because no-one can really agree on whether it’s a neurological sense – along the lines of sensing temperature and balance – or something more psychological.

Time problems

I’ve always known I had a weird ‘Thing’ about time. The first example I usually think of is that I always find it really stressful and anxiety-inducing to know that I have a fixed period of time ahead of me, like “I’ll be in school for six hours from 9 until 3”. I’ve never been able to properly express why it’s so stressful. It’s not simply that I didn’t want to be in school, or that I didn’t want to be there for so many hours – it’s something inherent about a fixed time period, regardless of what or how long.

I’m similarly stressed by things like, knowing that I need to leave the house at a certain time to catch a bus. When that’s the case, I veer between being over-prepared and ready unnecessarily early, and ignoring the time limit (as a way of avoiding the anxiety) and ending up rushed or surprised. Often I go between those extremes more than once in a single period of preparation.

I’m not very good at keeping track of dates in the future. I’ve always had a tendency to anticipate things a really long way in advance. But I also quite often find myself surprised when a certain date arrives even though I knew about it.

Just recently I’ve come to the conclusion that all of these ‘weird time things’ I  have actually do all relate to each other, even though they seem very different at first glance. They relate to each other because they all arise from the fact that I have very poor chronoception. I’m bad at sensing time.

Outsourcing

It sounds weird to say, because like I said above – time doesn’t feel like something that you sense. Time just happens, and I know that. There’s a certain number of minutes in an hour, hours in a day, days in a year, and so on. I know all of that, rationally. But I know it in the same way that I know the earth is rotating. I know it, but I don’t feel it. And so, in the same way as a scientist keeping track of the earth’s rotation through calculations and measurement, I have to outsource my sense of time in order to understand it.

That outsourcing is mostly in the form of checking clocks and calendars a lot. I carefully plan times and dates and always try to get an objective estimate of how long something will take or last. Because of all that, I probably seem like I’m good at time perception. But it’s all just overcompensation, like someone who acts arrogant because they lack self-confidence.

In fact most of the time now, I try to arrange my life so that there’s little need for that compensation at all. These days most of my time is pretty unstructured. I avoid commitments that have a set time or deadline, because commitments like that require me to put a lot of effort into keeping track of the time manually and trying to understand it. If I don’t bother with that, then sure I do lose track of time sometimes and forget to go to bed or don’t notice that I haven’t moved in hours – but at least I’m not under constant stress .

Explanations

My lack of chronoception neatly explains all of my weird time problems. I’m stressed by things like fixed time periods and deadlines because I know they’re important and meaningful, but I don’t have an instinctive sense of what they mean. So I have to put lots of effort into consciously trying to understand and keep track of something that’s inherently totally abstract and confusing to me.

I unpredictably veer between being under- and over-prepared because I don’t have any natural ability to judge the ‘correct’ rate to do things. Where someone else might easily be able to think “I have half an hour to get ready, so I know what things I have time for and how quickly I need to try to do them”, I just have to guess and hope for the best, and constantly check how I’m doing to try and adapt as I go.

I can’t keep track of dates in the future because everything in the future is just in one big amorphous ‘some time other than now’ category in my brain. An appointment next week, and my birthday next year, both pretty much live in that category together. So although I can intellectually know which will come first by thinking about dates and years and numbers, it always feels like something of a surprise when any given date actually arrives.

This also explains why I intermittently come across as either very patient or very impatient. If I want something to happen, then I want it to happen now, because now is the only thing that really means anything to me. But if something isn’t happening now, then I usually don’t care much when it is happening – because next week and next month and next year all feel more or less the same.

My systems of overcompensation paradoxically mean I’m generally really good at meeting deadlines. I talked to my brother who does seem to have a decent sense of chronoception about how he handles deadlines and he said “I just work at a fairly steady rate until the deadline”. Because somehow he has the ability to know what rate he needs to work at in order to correctly meet the deadline?! I don’t have that, but I do still have a strong feeling that deadlines are important and missing them is bad.

So my solution is to pretty much always do things as soon as possible and as quickly as I reasonably can. I work on a university assignment at the same rate, whether the deadline is tomorrow or next month. I never have to try to make decisions about how quickly to work or when to do something, because I just have one setting – ‘now’. As with many things, that system has its pros and cons. The upside is that I pretty much never miss deadlines. The downside is that I sometimes cause myself stress even over things which don’t have deadlines (or which have very distance ones), because I still have the feeling of ‘must do it now’, even if I actually don’t need to do it for months.

Realisation

Chronoception is now another in my very long list of things that made me go “…you mean everyone isn’t like that?”. There’s been some little pieces of research into the link between autism and time perception, but it doesn’t appear to be something many people are interested in. Anecdotally I know quite a few autistic people who have similar chronoception problems to me. It feels like an autistic thing, because it’s to do with processing and instincts and all those subtle things that are different for us.

It’s also on my long list of things that I don’t (yet) have any solutions for. But it’s always interesting to have a new word and a new concept to apply to my experiences.

Inclusive autistic traits

Problems

Autism is big and messy and confusing, and no-one really understands it. It’s difficult to make a good summary and description of autistic traits, because generally no-one can agree on what autism actually is. But even taking that into account, I’ve never read a satisfactory article or leaflet summarising and describing autistic traits.  Every description I’ve ever read suffered from at least one of these problems:

  • Wrongly weighted. So many descriptions of autism written by neurotypical people focus completely on social traits. Often autism is described as an entirely social thing, and any other differences are considered incidental if they’re mentioned at all.
  • Vague. The “triad of impairments” is the worst offender here. It divides social traits arbitrarily into “interaction”, “communication”, and “imagination”, but there is absolutely no clear distinction between those categories. They’re meaningless and useless divisions that don’t remotely simplify the description, and so they serve no useful purpose – they just add confusion.
  • Pathologising. This is so extensive it’s barely worth mentioning. Descriptions of autism almost universally describe it as a disorder, illness, or disease, and the traits as symptoms and deficits. This bias is both inaccurate and harmful.
  • Restrictive. Autistic people are so incredibly varied. And yet often, the only acknowledgement of that diversity is a mention of “both ends of the spectrum”, functioning labels, or a comparison of Asperger’s and classic autism. Not only are these trivial attempts at expressing the variation between autistic people, they are actively harmful in their own right.

Solutions

So, I’ve written my own. This isn’t a set of diagnostic criteria, because I don’t know how to diagnose autism. It’s my best attempt at an inclusiveaccurateuseful, and value-neutral, description of autistic traits and autistic people.

A lot of the things I’ve written feature directly opposite examples, like “may hate X” and “may love X”. This isn’t a mistake, it’s a reflection of how varied autistic people can be. Often, autistic people occupy extreme ends of the bell curve in any trait – but not necessarily the same end. Because I wrote this list to be inclusive, no autistic person will have every trait on it. That would be impossible, since many of them are mutually exclusive!

The point is to include the widest possible range of  autistic traits, not the minimum range of criteria needed to define autism. Instead of showing what things every autistic person will have in common (which would result in the kind of pitifully small and generally useless descriptions found elsewhere), this list intends to show you the greatest diversity you can expect to encounter among autistic people.

The list

With all that covered, let me get to the actual list. It’s divided into three broad categories of traits: social, sensory, and cognitive. These divisions are not perfect, but they’re the best way I’ve found of categorising, and they make it easier to understand the list. Each category is divided into sections (numbers) and subsections (letters), which each contain a list of specific example traits.

Social

  1. Differences in body language and nonverbal communication.
    • A. Different use of eye contact.
      • May use eye contact more or less frequently than others.
      • May use eye contact only in specific situations (e.g. only with familiar people, or only with strangers).
      • May use eye contact in different ways or at different times than others.
    • B. Different use of vocal tone.
      • May use less variation in tone than others, or not use tone deliberately to add meaning.
      • May use more variation in tone than others, or have a ‘sing-song’ quality to speech.
      • May speak more loudly or quietly than others.
    • C. Different use of gestures and body language.
      • May use fewer gestures than others.
      • May not use body language deliberately to communicate.
      • May use different types of body language than others to communicate.
      • May use gestures more often than others.
    • D. Different use of facial expressions.
      • May use less variation in facial expression than others.
      • May not deliberately use facial expressions to communicate.
      • May use different types of facial expressions from others.
      • May use more expressive or extreme facial expressions than others.
  2. Differences in verbal communication.
    • A. Different use of literal and metaphorical communication.
      • May use entirely literal language.
      • May use unusual types of metaphor and analogy.
      • May focus on precision and accuracy in words used.
      • May use words to have different meanings than others.
    • B. Different use of speech.
      • May have difficulty speaking in certain situations, such as under stress.
      • May not use words at all.
      • May use echolalia (repeating specific words or phrases) to communicate.
      • May have a strong preference for text-based communication or difficulty using speech.
      • May have a strong preference for speech or difficulty using text-based communication.
  3. Differences in interaction and relationships.
    • A. Different desire for relationships.
      • May not want or need social relationships much or at all.
      • May want specific types of relationships but not others.
      • May form unusual types of relationship dynamic or be less bound by social norms.
      • May be very reliant on social norms and rules to guide relationships.
    • B. Different preferences for groups.
      • May need one-to-one interactions and struggle in larger groups.
      • May need larger group interactions and struggle one-to-one.
      • May need more structure and rules in group interactions.
      • May find presenting to crowds easier than reciprocal interactions.
    • C. Different preferences for interactions.
      • May prefer practical and pragmatic interactions or have difficulty with unfocused interactions.
      • May not be able to focus on interacting at the same time as other activities or inputs.
      • May prefer parallel interactions or have difficulty with direct interactions.
    • D. Different social instincts to other people.
      • May have trouble communicating with others, especially non-autistic people.
      • May be drawn towards other autistic people for relationships.
      • May be socially outcast by others.
      • May feel like part of a different culture.

Sensory

  1. Differences in sensory sensitivity.
    • A. Over-sensitivity to certain senses or specific sensations (e.g. bright lights, specific textures, strong smells, loud noises).
      • May experience pain at sensations which others do not strongly react to.
      • May become ill or uncomfortable at sensations which others do not strongly react to.
      • May be distressed and want to avoid or escape sensations which others do not strongly react to.
    • B. Under-sensitivity to certain senses or specific sensations (e.g. pain, temperature, taste).
      • May not notice sensations which others usually react to.
      • May not be able to distinguish between sensations which others usually can.
      • May need more intense input in a certain sensation than others usually do.
    • C. Narrower comfortable range of certain senses or specific sensations.
      • May struggle to find a comfortable intensity of input.
      • May easily become over- and under-sensitive to certain sensations.
      • May need very particular type or intensity of input.
  2. Strong enjoyment, desire, or need for certain types of sensory input. Demonstrated by stimming (self-stimulation) behaviour.
    • A. Visual stimming.
      • May stare at certain lights, patterns, shapes or colours.
      • May stare at certain moving objects, changing or flashing lights.
    • B. Pressure stimming.
      • May apply pressure from weighted objects.
      • May sit or lay in postures which apply pressure from body weight.
    • C. Vestibular stimming.
      • May move in certain ways like rocking or spinning.
      • May seek activities which involve swinging, fast acceleration, or other types of movement.
    • D. Proprioceptive stimming.
      • May move body in specific ways such as hand flapping, waving, twirling hair.
      • May touch and hold onto objects and surroundings.
    • E. Tactile stimming.
      • May be drawn to the feeling of particular objects or textures.
      • May stroke or rub objects against certain body parts like hands and face.
    • F. Auditory stimming.
      • May use mouth, voice, and body to make particular sounds.
      • May use objects to make particular sounds.
    • G. Other types of stimming.
      • May be very drawn to specific smells, tastes, or other sensations.
      • May be very drawn to particular intense sensory experiences (e.g. spicy food).
      • May stim in ways which combine multiple different types of sensation.
  3. Other differences in sensory processing.
    • A. Different ways of processing multiple or combined sensations.
      • May have difficulty separating sensory experiences into individual parts.
      • May have difficulty combining individual parts into one sensory experience.
    • B. Difficulty with sensory modulation.
      • May have difficulty attending to relevant stimuli.
      • May have difficulty tuning out irrelevant stimuli.
      • May need a controlled environment with few sensory inputs at the same time.
    • C. Other specific differences or difficulties in processing.
      • May have trouble understanding or decoding speech (auditory processing disorder).
      • May have blending or merging of different senses (synaesthesia).

Cognitive

  1. Strength of focus and rigidity.
    • A. Intense focus and interests.
      • May spend the majority of time focused on few specific interests.
      • May concentrate on certain topics or activities for long periods of time.
      • May have strong emotional attachment to interest topics.
      • May have in-depth and expert knowledge about interest topics.
    • B. Preference for routine and sameness.
      • May have specific routines for days, weeks, or certain activities.
      • May be distressed and disoriented when routines or plans are disrupted.
      • May need to plan things carefully in advance.
      • May be more anxious than others when in new or unfamiliar situations.
  2. Difference in cognitive abilities.
    • A. Differences in executive function.
      • May have strengths or weaknesses in one or more types of memory (e.g. short-term, long-term).
      • May have difficult planning and executing a series of steps or actions.
      • May have difficulty identifying and solving problems.
      • May have difficulty concentrating on relevant information or input.
      • May have difficult starting, stopping, or changing activities.
      • May have poor impulse control.
      • May have poor sense of time.
    • B. Differences in experiencing and processing emotions.
      • May mistake physical sensations for emotions, and vice-versa.
      • May have difficulty identifying or naming emotions (alexithymia).
      • May have difficulty recognising or understanding others’ emotions.
      • May involuntarily experience others’ emotions.
    • C. Different spread of cognitive skills.
      • May have slower processing speed than others.
      • May have extreme strength in specific areas (e.g. nonverbal reasoning, language, music, mathematics).
      • May have face-blindness (prosopagnosia).
      • May have skills which vary more than others over time.
  3. Difference in thinking styles.
    • A. Different approach to details.
      • May have a strong tendency to notice details before, or instead of, overall ‘big picture’.
      • May have a strong tendency to notice overall ‘big picture’ before, or instead of, details.
      • May have difficulty creating examples from a general idea.
      • May have difficulty generalising from specific examples.
    • B. Different approach to patterns and systems.
      • May be skilled in recognising patterns.
      • May be skilled in identifying minor details and errors.
      • May be skilled in systemising subjects such as mathematics, science, puzzles, languages.
      • May enjoy organising and arranging information or objects.
    • C. Different ways of processing and making decisions.
      • May have a tendency for ‘black-and-white’ thinking and logical extremes.
      • May have a strong preference for particular ways of reasoning (e.g. logic, emotion).
      • May seem to think ‘outside the box’ or reach conclusions in different ways to others.

Variation

  1. Variation of traits.
    • A. Long-term variation.
      • May change throughout development from childhood to adulthood.
      • May change over years during adulthood.
    • B. Environment.
      • May be more sensitive to overload when already stressed, ill, or tired.
      • May use different social behaviour depending on social situation.
  2. Variation of presentation.
    • A. Conscious variation.
      • May deliberately mask traits in certain situations.
      • May use learned rules to replace instincts.
    • B. Unconscious variation.
      • May have learned masking behaviour from early childhood.
      • May have trauma or mental illness which affects presentation of traits.

Please use this list

I’d love for people to use this list, or descriptions based on it, in place of the triad of impairments and other flawed summaries. If you use it, please do credit this post – but really I care more about everyone having access to good descriptions of autism.

Swimming pool theory

Autistic people are often stereotypically described as being detail-focused or unable to see the big picture. But to me it’s always felt like an unsatisfactory description to call someone either detail-focused or “big picture”-focused. It’s impossible to do one without the other. I think the more significant factor is about how naturally or easily a person can go from one to the other, and how they use them to learn. Me and my dad have been working on a theory to describe the different learning styles that arise from this – it starts with an analogy.

The swimming pool

Imagine that the system of knowledge you want to learn (say, the rules and applications of a certain mathematical method) is a big, oddly-shaped swimming pool full of water. You get dropped in the middle of the pool, and the aim of learning is to map out the entire area – to find out where all the water is and where it ends. There are two main ways to go about this, which I’ll call the extrapolation method and the interpolation method.

Extrapolation
You start your map of the swimming pool by taking note of the spot you’re in when you start. You can map a certain distance around you that you can see – say, a few feet away from you in all directions. You start to paddle around, gradually mapping the new areas that you swim to. Your map grows from the place you started, in whatever shape you decide to paddle.

Gradually your map expands at the rate that you swim around. Eventually, you will have paddled around enough to have a pretty accurate map of the pool. You’ll probably have the odd patch which isn’t mapped, but you’ve got most of it recorded accurately.

Interpolation
The interpolation method is like being extremely short-sighted. You can’t just add the surrounding area to your map. You might be able to keep track of the path you take, but you can’t map a large enough area around you for that to be an efficient way to learn. You can barely “see” beyond the end of your nose. You’re not aiming to map whatever area you swim to. Instead, you have one clear goal: you swim around, looking for the edge of the pool.

Once you find the edge, you stick to it, and start making your way along. You carefully map out the line of the edge, all the way around. Eventually you get back to where you started – you’ve got the entire outline of the pool mapped. In one instant, your map of the entire pool fills in. You know that the pool is a solid body of water, so you immediately know exactly where the rest of the water is.

Beyond the swimming pool

In case it’s not obvious, the swimming pool part is largely irrelevant – it is nothing but an analogy. The point of the theory is that there are two main ways of learning. The difference is which “direction” a person can most easily move in – from details to general ideas, or from general ideas to specifics.

Extrapolaters are good at starting from one particular spot and finding nearby information (they can see a reasonable distance out across the water from wherever they are). They can create a fairly complete knowledge system just by moving from specific to specific, and example to example. But they have less ability to fill in gaps just from finding the edges of the system.

Interpolators can’t easily see from one specific to another or learn lots of details in one go. But they are good at finding the outlines of information and filling in from there. Their instinct is to find the edges of what they want to learn, which makes them good at getting systems of knowledge without any gaps.

Neither of these methods is better than the other, of course. They both have different perks. The extrapolation method increases your knowledge gradually as you go along – if you stop halfway through the learning then you have half of the knowledge. The interpolation method ensures that you have 100% of the knowledge once you’re finished – there’s no chance of any unmapped patches by the end.

But I don’t think the method a person generally uses is a just a choice every time. I think it’s mostly defined by innate traits like how much a person can “see” around the details they are focused on, and how easy they find it to fill in an area that they’ve outlined. Based on those abilities, each person will have an instinct for how they learn best – and might not even realise that other people do it differently.

There’s also no clear binary distinction between the two methods. Each person just has different preferences and tendencies – some people might have a strong drive towards one method, some people might find it easy to switch between the two. And I’m sure I’ve oversimplified my explanations of these learning styles, and not everything fits into them anyway.

Teaching and learning

Most teachers start a lesson by giving examples of the problem – challenging students to find the “big picture” themselves is supposed to be an effective way of teaching. And it must work well for a lot of people, otherwise it wouldn’t be so popular. Extrapolators can instinctively generalise from being given examples, and find it easy to add new knowledge in little chunks at a time.

But I’ve always found it difficult – if not impossible – to learn general concepts from examples. I can’t work out the “big picture” if all I’ve been given is specifics. When I’m taught in this way I end up frantically paddling around, barely able to see where I’m going, and desperately hoping I’ll find an edge that I can stick to in order to teach myself the rest – all while I’m expected to have already started filling in a map of the places I’ve passed through.

 

Extremes

I don’t know whether this is an autistic trait. My instinct tells me that it could be, but I also have a strong suspicion that my instinct will turn out to be wrong. Both me and my dad are extreme systemisers and extreme interpolators, and so my clearest idea of an autistic thinking style is based on that. But I have no idea whether it’s accurate for other autistic people, or if I’m just assuming there’s a connection because they happen to coincide within my family.

My secondary hypothesis is that the learning style (interpolation or extrapolation) is not the autistic trait in itself, but that it’s an autistic trait to have an extreme preference for one or the other. That would correspond with the way that autistic people often seem to be at one end of a bell curve or the other, in things like sensory preference and various other traits.

I’m really interested to hear input from other people on this. Are you an extrapolator or an interpolator (or maybe you think my distinction is meaningless)? Do you think a preference for one or the other is an autistic trait? Or that a strong preference in either direction is? Do I have completely the wrong idea trying to describe things this way?

Familiar strangers

I can be pretty good at talking to strangers. I can get through a targeted and purposeful interaction by being my natural affect-less self. That rarely seems to bother people – at least not that I’ve noticed. I can pretty easily pass as being ‘just’ in a hurry or distracted, and the other person can handle that without being uncomfortable.

It becomes much more difficult when I’m interacting with someone who isn’t a complete stranger. I go to my local pharmacy about twice a month to collect prescriptions. There is one person who works there most of the time, who has come to recognise me. I was perfectly happy to keep our interaction the same as it’s always been: I give my name, they go and bring my prescription. But before long they learned my name and didn’t need to ask for it any more.

It’s only as I write this that I realise most other people in my position would have developed their relationship with the pharmacist more than I have. I have never spoken to the pharmacist about anything other than my prescriptions. Ever. Not about the weather, not about my day, or their day, or local news, or anything at all that’s not related to the specific reason I’m there. The idea has literally never occurred to me.

Why would I talk to them about anything else? It would just confuse me. It would distract from the purpose of that specific interaction (i.e. to get my prescription). But it would also blur the definitions of the relationship. A pharmacist is someone you talk to about prescriptions. A friend or family member is someone you talk to about the weather (or your day, or their day, or the news..). Why would I talk to the pharmacist about ‘friend-level’ subjects? Am I trying to become their friend? It’s not very likely.

It’s not that I don’t like the pharmacist – I really do! They bring my prescriptions, they’re always helpful if there’s been a mistake or delay, they never seem rushed or distracted. They have all the qualities of an excellent pharmacist. I just don’t seem to have the connection that some people have: “If you like a person -> expand the interaction”. That doesn’t make sense to me when the interaction is happening for a specific purpose. I’m never actually going to become friends with my pharmacist, so there’s nothing to be gained from expanding the interaction.

It seems like other people do gain something from interacting with strangers or people they only know in a certain context. And not just that, but it’s also an instinctive reaction. I frequently see family members interacting with strangers and acting ‘friendly’ without even seeming to notice – sometimes they even deny it when I point it out! It’s so automatic that they can barely conceive of the idea of not doing it, so they don’t realise they are actually ‘doing’ anything. They would only notice if they saw me interact with a familiar person like the pharmacist, and recognised that I was definitely not doing it.

Burnout

I crashed out of secondary school twice during the course of my five years there. I dropped out of college by the end of my second year. I bailed on my first ever ‘proper’ job at a fast food restaurant after less than two months and about ten shifts, half of which I didn’t go to. I had to give up on my volunteering position in a cafe after a few months and several missed days.

For a long time I was able to recognise this pattern, but I couldn’t understand it. I was never able to explain it to other people, because it just sounded like I was being irrationally negative: “I just have mental breakdowns every few years, so it’s bound to happen again soon.” People would just try to reassure me that I was exaggerating or making assumptions. But… I usually turned out to be right.

Eventually I came across the phrase “autistic burnout”. It’s an experience that lots of people have described, where a period of long-term gradual overload becomes intolerable. That sounds understandable enough: non-autistic people experience burnout sometimes too, maybe when they have major life events happening. But my burnout hasn’t been at times of particularly major life events – nothing more major than others around my age were going through. The explanation for that is deceptively simple, but difficult to fully explain: I have a much lower than average threshold for stimulation.

Stimulation

I’m not just talking about sensory stimulation here – that’s a part of it, but only a small part. I’m talking about the really general meaning of stimulation. For me, that includes things like:

  • Spending time around people (moreso if they are strangers).
  • Being told what to do.
  • Doing time-dependent and time-limited tasks.
  • Travelling away from home.
  • Anything which involves commitment to a task or a time or anything else.
  • Dealing with a rigid social hierarchy of any kind.
  • Sensory input – a lot (e.g. crowded places), bad (e.g. smells), or both.

There are other things, too – I only wrote down the main ones. Some of them are so subtle that it’s difficult to even define them. It’s probably easier to define what stimulation isn’t. It isn’t “me being at home by myself doing whatever I want”. Anything which deviates from that will be stimulation of some kind or another.

Threshold

I think the concept of stimulation applies to everyone – autistic and otherwise. Everyone is probably familiar with the feeling of needing a break, or being desperate for a holiday, or just wanting everything to STOP. Everyone has a certain amount of energy (or spoons, if you prefer) per day, per week, per hour – and it costs that energy to deal with stimulation.

The difference is that not everyone has the same amount of energy. The average able-bodied NT person has plenty of energy to spare, so that they rarely ‘run out’. Most of the time they are perfectly able to have a full-time job, socialise, look after themself and their home, and pursue their interests and hobbies. The idea of a limited energy level that doesn’t simply result in sleepiness after a long day is difficult to understand if you’ve never experienced it.

But some people – autistic people for example, or people with chronic illness, or mental health problems, or many other things – have a much smaller amount of energy to spend. That means they run their energy down to zero much more quickly when doing the same things. People with reduced energy thresholds can still exert themselves once they’ve run out – just like spending money with an overdraft. But overloading that energy debt can have extreme negative consequences (just like how you pay back more in interest than the amount you actually borrowed).

Depending on the reason for a person’s reduced energy threshold, the result of an energy debt may vary. For a person with chronic pain, getting into energy debt might result in a flare-up. For me, the energy limit is not so much physical as neurological. So the result of me getting into debt is a mental inability to cope: which results in severe anxiety, panic attacks, and depression.

Burnout – meltdown

My description of an inability to cope with overload might sound familiar if you read my post about meltdowns. That’s because it is similar. In fact, I’d say that burnout is a type of meltdown – one that occurs over a much longer timescale. It fits the same niche: it’s my brain’s last resort, an extreme emotional release as a result of overload. But it’s a response to a chronic energy debt, instead of an acute one.

Burnout eventually does have the intended effect – it stops the overload. Because it stops my ability to function at all, which handily includes my ability to go to school or work or do the things that were draining my energy faster than I could replenish it. Just like a meltdown forces me to get out of whatever situation was acutely overloading me.

Aftermath

After I’ve hit burnout, there is an unavoidable period of rest as I pay back that energy debt (which could take weeks or years, depending on how large the debt is). And then, if I haven’t learned my lesson, I go back to the overloading things and start racking the debt back up again.

So, I think I will try to learn my lesson. The trouble is, that’s not easy. I’ve spent my life so far having full-time occupations and catastrophically failing to cope with them. I don’t actually know what it’s like to have a level of stimulation that I can cope with. I don’t know what level of stimulation that will be, and I don’t know how to find out without testing myself until I crash again.

For now, my plan is to increase my level of stimulation very slowly. It’s been two years since I dropped out of college after my latest period of burnout. I spent the first year with no real occupation, which was needed in order to repay the massive debt I’d accumulated over the years previously. For the last year I’ve been studying at home full-time, which entails only minimally more than zero stimulation.

This next year I’m planning to carry on studying full-time, and incrementally add more things into my life. I’m about to become an assistant presenter for courses about autism, which will probably only happen a few times a year but is very high-concentration in terms of stimulation (talking to groups of strangers – eek!). I’m tentatively starting to work on a book and looking into publishers. I’m hoping to take more direct action on my mental health. I want to try to see my distantly-located friends and brother more frequently.

Those are mostly good things, but they’re also very hard. I am extremely wary about pushing myself too much. Burnout is not fun.

Disabled

It’s difficult to explain the concept of limited energy to people who haven’t experienced it. It’s even more difficult to explain when I actually have functioned with a full-time occupation before. If I now say I’m unable to do that, it either seems like I’m flat-out lying, or like I’m deliberately ‘disabling’ myself by limiting what I can do. But neither of those is the case. I never knew that most people don’t feel overwhelmed and overloaded all the time. I did know that most people don’t have mental health breakdowns like clockwork every few years – but I didn’t know why that happened to me and not others. Maybe most significantly, I didn’t know that energy limits existed, let alone that the idea could explain my experiences.

Now that I do know those things, I’m not lying about my past or trying to make myself worse off than I am. I’m finally being honest, to myself, about my own abilities. If that looks like I’m limited myself, it’s only because I’ve pushed myself way too hard for my whole life until now. It might look like I now have the life of a ‘more’ disabled person than I have before. But it’s actually the opposite. I am just as disabled as I always have been, but now I am taking some control over how my life works. I’m looking forward to finding out what happens.

What is autism?

I have gradually become less certain of the answer to this question. At this point, my short version is “I have no idea!”.

The most accurate answer is “autism is the label given to people who fit certain behavioural traits”. That’s so circular that it’s pretty much meaningless, but it’s also the only answer that really means anything.

Autism was originally defined based on behaviour, by two separate researchers who described a small number of individuals fitting certain traits. Since then, it’s continued to be defined based on behaviour, although the actual criteria have changed a lot over time.

When something is defined by appearance, it’s easy to automatically assume that there’s something ‘underneath’ that sums it all up. The most pleasing and logical explanation is that autism is caused by one thing, one difference in brain structure or growth or biochemistry – and that every autistic person has that same underlying thing. The trouble is, there’s actually no evidence for that. Lots of people have tried to find it, but no-one has succeeded. There are vague bits and pieces that autistic people tend to have certain brain differences, or that most autistic people share a certain cognitive trait, or that there’s a correlation between autism and some biochemical process. But if something can’t be shown to apply to every autistic person, then it can’t be considered the underlying ‘thing’.

Of course it’s still possible that there is one underlying thing, and we just haven’t been able to find it yet. But it’s also possible that there’s not, and that there are multiple different underlying things which can result in autistic traits. That seems plausible based on the fact that no-one’s been able to find something that’s consistent across all autistic people. But it also raises the question of why and how the same set of traits can arise from various completely different causes.

So, there may not be one underlying thing. And there has never been a perfectly consistent set of behavioural traits. And yet, we still act like autism is ‘something’ and that we all know what it means! This kind of uncertainty makes me feel like I shouldn’t be writing about autism at all. How can I write about something when I don’t know what it is? But then I remind myself that no-one else knows what it is either, and they’re all still writing about it.

I think it’s pretty likely that there are subtypes of autism. Although I definitely don’t think those subtypes correspond to the functioning levels or the autism/Asperger’s distinction that is so popular. If they are defined by anything, my guess is they’re defined by the types of cognitive processes a person has, which is probably influenced by whatever is the underlying cause of their particular autism. I have spoken to autistic people who I strongly relate to, and others who feel almost as different from me as NT people are, as well as a wide range in between. And those groups do not remotely correspond to whether a person is considered high or low functioning, whether they can speak, or what diagnosis they might have.

But – at least for the moment – it’s useful to have a name for this big overall group of people who tend to have a lot of things in common. Until we have a better idea of what the subtypes are (if there are any), or until we are accommodated so well that we don’t even need a label, ‘autism’ is handy. Better to have a vaguely defined label than none at all. I don’t know what we mind find out about autism in the future (especially once researchers stop wasting all their time and money on trying to cure it, and start learning actually interesting and useful things). But for now, as a scientist, all I have to go on is the best available evidence and hypotheses.

So, I guess I’ll just carry on writing about this thing which I don’t remotely understand, which I can’t possibly define, which no-one is able to make sense of, and which is somehow still a hugely important part of my life.

Old friends

A few weeks ago I unexpectedly ran into two people who I haven’t seen in a year. The year before that I only saw them a few times in total. But up until two years ago, they were part of my very closest small friend group.

It was very strange seeing them again. A lot has changed in all of our lives. I certainly feel like I’m very different to who I was when I was close with them. But at the same time, talking to them again made me feel like almost no time had passed since the last time.

Running into an old friend is a very unfamiliar experience for me. I’m pretty young anyway, so I haven’t had much time to develop and then lose touch with friends. I’ve also hardly had any ‘friends’ in the first place. Most times when I’ve lost touch with people (like when I left primary school, and then when I left secondary school), it’s been a relief to have them out of my life. But losing touch with someone who I actually have largely positive memories and feelings towards – that’s never really happened before.

We lost touch because we all left college and were no longer seeing each other daily just out of habit. Everyone became busy with their new things and meeting up became more like a chore than anything else. It’s been two years since college ended and I still have no idea how I actually feel about the situation. Am I sad? Do I miss them? Do I care? I’m not sure. I really did enjoy spending time with them when we were close. But I don’t feel like I desperately want to spend time with them now. We would have very little to talk about, not much in common, and no shared reference points.

So, were we only friends because we happened to be at college and school together? It can’t be quite that simple, because there are plenty of people who I went to school and college with, but I certainly didn’t have ‘plenty’ of friends. Is it just that we happened to be in more classes together? Is it just because they took pity on me and invited me to sit with them at lunch when they saw me by myself? (Yes, that really is how we first met).

If we have other things in common apart from college, then why have we lost touch? Surely if we really enjoy each other’s company, we should all still be putting in just as much effort to see each other as we always used to (even if external circumstances made that rare or more difficult). But that’s not the case either. When we left college, I pretty much accepted that we were going to lose touch, and soon gave up on trying to initiate contact. Most of the others seemed to do the same thing.

Did we stop getting in touch so that we wouldn’t be saddened by letting it happen organically? I don’t think that was the reason for me. I knew it was going to happen sooner or later, so I was resigned to the potential sadness involved, regardless of when or how we lost touch.

In the last few years, I have increasingly developed online friendships. These are a very real and important experience for me, but they also cause me even more confusion about the definition and purpose of friendships. If I made friends with the school friends at least partly because we were at school together, then why did I make friends with people online? We certainly haven’t been forced together by circumstance. Some aspects of getting to know each other online are extremely inconvenient: geographical distance, timezone differences, lack of easy ways of getting in contact. And yet it’s happened anyway, and some of my online friendships are much closer and more significant to me than in-person friendships of the past. Why? I don’t know! I don’t understand any of it! What are friends, anyway?!

My instinct is that my online friendships formed because we had a lot in common. Online profiles make it really easy to summarise your interests, identities, and personality. A significant number of my online friendships happened because I read someone’s profile and then sent them a half-joky message saying “We have lots in common, we should be friends!”. That kind of thing can’t really happen in-person. Instead you have to try to subtly collect information about a person until you can decide whether you will be capable of getting along. I guess some people might find that easy (or even enjoyable?), but I certainly don’t.

I suppose it’s also easier to reach a wider pool of people online. It’s easier to narrow down the type of people you’re exposed to by your own interests and preferences. So that makes it possible to be a lot more picky. If I wanted to be friends with autistic people at college, there would have been maybe two or three people who I was aware of. If I want to meet autistic people online, all I have to do is write a bit about myself and I end up surrounded by a community of autistic people.

So the friends I make online are likely to be more closely suited to me than people I meet in person. Maybe that’s why I don’t feel sad about losing touch with my college friends. They were really good friends at the time, and were very important to me. But they were important as my school and college friends. Now we aren’t at school or college anymore, I don’t need school and college friends – and neither do they. They have their own new friends now: university friends, work friends. And I have my own new friends too, friends that are suited to my life as it is now.

Real-time interactions

Real-time

I have trouble with real-time interactions. By ‘real-time interactions’, I mean the kind of situation where people are responding to each other directly and immediately. That means things like: talking face-to-face, on Skype, on the phone, and (sometimes to a lesser extent) using text or instant messaging.

I have trouble with them because they are not well-suited to my communication style. I am slower to process the things other people have said, and need even more time to formulate my own responses. I prefer delayed interactions, like emails, because you are expected to make a slow and thoughtful response, rather than an immediate one.

My trouble with real-time interactions is not obvious though. If you were having a face-to-face conversation with me, you probably wouldn’t realise I have difficulty. In fact, you’d probably say that I was very articulate (people have described me that way before), and be surprised that I’m saying this.

Automatic speech

The truth is that my mouth is a lot better at real-time interactions than I am. That means I’m good at automatically responding to communication, using words and phrases that really sound like they mean something. If someone says hello, I say hello back – I don’t think about it, it’s practically a reflex. Automatic speech like that is probably familiar to everyone to some extent.

But for me it can extend to much more seemingly-complicated speech. In an unplanned conversation, I often end up feeling like I’m just watching myself and wondering what on earth I’m talking about. I’ll find myself saying things which I don’t agree with, which don’t make sense, or which actively contradict things I’ve said before. And I say them because my brain is just mashing together elements of the context (like whatever the person before me just said) with an appropriate inflection and hoping that it sounds about right.

For whatever reason, my brain taught itself to make me look like I’m communicating whenever I am having trouble. Someone with a similar level of communication could have easily developed such that they just didn’t speak, instead of making non-communicative speech like I do. I don’t know why I do automatic speech and some people don’t, but I think there’s a lot less difference between us than there might seem.

Bad odds

I’d estimate that in an unplanned real-time interaction with a person I don’t know (I cope better with more familiar people), my apparent communication is about 20% accurate. That means that about 20% of the things I say are things I actually mean, and that only about 20% of things I want to get across actually do get across.

Imagine a person who could only speak about 20% as much as most NT people – that’s how effective my communication is some of the time. Don’t seem so articulate now, do I? In some ways, it’s handy to be able to ‘pass’ as NT in that kind of situation. It’s a lot easier to make it through a brief and inconsequential encounter if I can smooth things over with automatic ‘NT-speak’.

But in other ways, I sometimes imagine it would be better if I actually did only speak 20% as much in that kind of interaction. At least the things I did say would be accurate, so I wouldn’t have to worry about accidentally lying or talking nonsense. It would also mean that my communication difficulties would be a lot more obvious to people, and so they would be more likely to believe me when I say I can’t cope with real-time conversations.

Solutions

My usual solution is to try and make interactions as favourable to me as possible, to prevent automatic speech from kicking in at all. It’s worse if I’m in a busy or stressful situation, if there are a lot of people around, or if I’m talking about something that makes me nervous or uncomfortable.

The biggest single factor is that the interaction is unplanned or unexpected. I can handle scripted situations like buying something from a shop, because I can plan exactly what I need to say and I know what to expect. Some of my most memorable disastrous conversations have been answering unexpected phonecalls, or being abruptly taken aside for a ‘chat’ by someone. Most of these things are made worse in conversations with strangers, which are generally unavoidable.

But there are also situations when automatic speech happens with people I know, like family. Things like parties and gatherings, or difficult and uncomfortable topics can trip me into NT-mode even with people I really trust. I don’t know if it’s obvious from the outside, but it feels quite obvious from the inside. If you’ve known me at my most comfortable, then my NT-mode will be conspicuous, because I will seem much less autistic than usual! If my responses are as snappy and expressive as NTs’ usually are, it’s a good bet that I’m not in full control of what I’m saying.

The ideal way for other people to react to that would be to change the situation so it’s closer to my communication ideal, but that’s not always possible. If that fails, then my only advice to people interacting with me is: don’t take anything I say too seriously! I am very happy to be asked “Did you mean that?” if I say something that’s out of character or doesn’t make sense. It gives me a chance to actually process what I said, and a chance to take it back or correct it if I need to. I think it’s counter-intuitive for NT people, but anything I communicate in writing is always more reliably accurate than anything I communicate through speech.

Internet people

What it means to be an Internet Person

The internet is a really important part of my life. Sometimes I feel embarrassed about that, but I try not to.

The reason I sometimes feel embarrassed is because people who don’t rely on the internet as much as me find it incomprehensible. And the easiest response to not understanding something is to criticise or insult it. The truth is, I find it incomprehensible that there are people who don’t use the internet at all.

If you don’t use the internet as much as I do, you probably reacted to reading that by thinking “How sad, you can’t entertain yourself without the help of computers”. But it’s nowhere near that simple. Yes, sometimes I use the internet to entertain myself when I’m bored. And there are times when that could be replaced with a book or going for a walk, but I choose the internet because it’s easier or more convenient. Sure, feel free to consider me lazy for that – I’m sure it’s sometimes true.

But that is by far the least important use of the internet for me. Here are some things I wouldn’t have or do if it wasn’t for my use of the internet:

  • I wouldn’t know, or be able to communicate with, many of my closest friends.
  • I wouldn’t know how to best care for my pet gerbils – and might not even have them if I’d never learned what good pets they make.
  • I would never have progressed further in knitting than making a misshapen rectangle.
  • I wouldn’t be learning Swedish right now.
  • I wouldn’t be able to motivate myself to shower or leave the house.
  • I wouldn’t be studying my degree.
  • I wouldn’t know that I was autistic. I wouldn’t know other autistic people. I wouldn’t be writing for and learning from other autistic people.

In short, I wouldn’t be doing much at all.

Why I’m an Internet Person

I know that some people don’t use the internet much – some people don’t need it much. But there are a lot of different types of people who the internet is well-suited for, and I just do happen to be in lots of those groups.

  • Shy people.
  • Introverted people.
  • People who communicate better in writing.
  • People who find it difficult to go out.
  • People who like reading.
  • People who like learning.
  • People who have trouble making friends.
  • Autistic people!

I know that last one is a bit of a generalisation. They’re all generalisations, of course. It’s just that I think a lot of the reasons I benefit so much from using the internet are related to being autistic. Some people might think it’s sad that most of my closest and most fulfilling relationships are with people I’ve never met. But it’s not that I’m choosing that over face-to-face relationships. It’s that I wouldn’t have those relationships at all if I wasn’t using the internet.

What I get from being an Internet Person

I was talking to my brother the other day about the computer game Minecraft, which I’ve recently started playing. I mentioned that I had been playing a multiplayer game online, and he said “But with who? How do you find people to play with?”. And then he paused and said “…You know people, don’t you.” My brother, the most sociable, gregarious, and charismatic person I’ve ever known – he would have trouble finding someone to play Minecraft online with!

I know that’s not the best example of a vital social skill. But I think it’s representative of the general way that I am able to use the internet to my advantage. Playing Minecraft might not be the most enriching, productive, or sociable use of my time. But playing it with other people, where I can talk to them and work together, is still better than playing by myself.

It might not seem like much of a skill, but I think effective internet use can be really valuable. I read a post recently (be warned for a bit of swearing, and confusing formatting if you aren’t familiar with tumblr), which is part of what prompted me to write this one. My ability to find friends to play computer games with is just one minor example of the way I can use the internet to my advantage.

All those other things I listed are yet more examples. And that linked article mentions another big one: rapid skill acquisition. My default when I don’t know something isn’t “never mind then”, it’s “I’ll look it up”. I find it truly baffling that there are people who think easy access to information online can possibly be a bad thing. But I’m sure those same people find it baffling that the internet can be so important to me.

I spend a lot of time on the computer, and that’s OK. I’m an Internet Person.

Autisticality

The word ‘autisticality’ was actually coined by my friend. Although I’m sure other people have said it before too; it’s quite a natural word to create, really. It could just as easily be “autisticness”, “autistitude”, or even – “autism”. Oh, wait.

In theory, autisticality means just the same thing as autism, right? “That kid’s autism affects their social skills”, “that kid’s autisticality affects their social skills”. And yet, it’s different somehow.

Maybe it will make more sense with some other examples. How about a broken leg:

  • My broken leg means I can’t walk.
  • My leg-broken-ness means I can’t walk.

They have the same meaning in the simplest way. But “broken leg” is very concrete and specific. Whereas “leg-broken-ness” is abstract, like it’s one-step removed from just “a broken leg”. It makes it sound like “leg-broken-ness” is some kind of all-encompassing permanent aspect of the person. That’s why the second option doesn’t make much sense – it’s actually just one small and temporary part of them. In this case, it has one specific effect: making them unable to walk.

Autism/autisticality works the same way, but in reverse:

  • My autism means I am prone to anxiety.
  • My autisticality means I am prone to anxiety.

The first one sounds like “my broken leg means I can’t walk”. It feels like saying “my specific, temporary, and abnormal medical condition gets in the way of me functioning like I usually do”. The second one feels like saying “this overall aspect of me defines the way I am as a person”.

There is a person who can walk, temporarily disguised by the broken leg. But there isn’t a non-anxious person, disguised by the autism.

There is just a person, and autisticality.