Tag Archives: actuallyautistic

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.

Why I love board games

I’m not sure if board games are a particularly autistic thing. But I know that they are a very popular pastime among my family, and one of my favourite modes of interaction. I think board games bring together several different factors which combine to make one of the best social situations for me to enjoy.

Structured

There are clear parameters for the interaction. Everyone knows that we are going to sit around the table until the game is finished and that we all have a specific purpose for being there. There’s no need to try and improvise with conversation or work out what people want to be doing, because everyone already knows what they’re doing there.

Time-limited

There is a predefined end for the interaction – when the game ends. That provides a socially-acceptable natural time to leave or take a break, without having to create an excuse if I want to get out of the situation.

Rule-bound

There are rules to the game. No-one will think I’m being overly rigid or pedantic if I enforce the rules by reminding people what to do and how to play (me and my dad are usually the designated arbiters!). Similarly, no-one will find it weird when we explicitly discuss the rules of the situation (whereas it’s totally unacceptable to ask about the rules of a typical social interaction).

Systemising

I love games generally. There’s a lot of room for planning and strategising, and I get to stretch my brain and work hard to try and win. But it’s all within defined rules which stops the choices from being overwhelming.

I don’t have much of a conclusion for this post! Just that I’m glad my family have a popular type of interaction that works well for me.

Food

Food is a notorious issue for many autistic people, and I am definitely included.

I’ve always been a legendarily ‘picky eater’. From the age I could express a preference, I demanded that foods on my plate not be touching. I never wanted to eat vegetables. I would always prefer to eat my same few favourites over and over again, and eating out or in a new place was a huge source of stress. I was renowned for ending up with a plate of bread and butter at family parties or gatherings.

My food issues have always varied a bit over time. When I’m generally more anxious and stressed, I get more strict about my ‘rules’ because they’re a source of control and reassurance. But the underlying preferences are always there. Certain things are just impossible for me to handle – certain combinations of tastes and textures are processed like a threat and my brain tells me it’s harmful.

I don’t like most strong flavours or spices. I can’t stand ‘savoury’ foods that are at all sweet or sugary. I don’t like anything which has lots of different flavours mixed together.

I generally can’t deal with contrasting textures in the same mouthful. I don’t like foods to be mixed because I don’t eat them together anyway, so having them separate on the plate just makes it easier! If anyone was to closely watch me eat something mixed, like noodles with peas, they would see that each forkful contains only one or the other – never both.

There are also some textures which are unacceptable even by themselves. I like things that are very soft, like mashed potato or well-cooked (over-cooked!) pasta. And I like things that are completely crunchy, like toast or raw carrots. It’s in-between textures that are a problem. Unfortunately, that in-between area is where most cooked vegetables lie.

I’m working on finding ways around it, though. I over-cook vegetables until they’re falling apart, or blend them in sauces and soups so they’re completely uniform. I generally stick to my favourite reliable foods, which are always consistent. I take nutritional supplements to make up for what I might be missing out on. It’s not ideal, because of course it seems more right to get everything you need from ‘real’ food. But lots of things in life aren’t ideal, and I think food is a relatively minor issue in the scheme of things. If I’m getting enough calories to power my body through the day, and enough nutrition to keep all my organs in working order, then I think I’m doing alright.

Generalising

For a person that’s supposed to be really smart, I sometimes seem to miss the exceedingly obvious.

I am usually surprised by the twist at the end of a children’s film. I never realised that an episode with two separate storylines is supposed to draw attention to the parallels between them. When I learn a new technique in a video game, I often fail to identify future situations which require the same technique – even though I probably learnt it very quickly in the first place.

I guess I have problems with generalising. This often looks like problems with learning in the first place, but it’s very different. I’m a fast learner, and it usually only takes me one ‘try’ to get something into my memory. My difficulty comes in recognising future situations where that new knowledge is relevant or useful.

My brother and cousin found it hilarious when I played the game Antichamber. Every time the game demonstrated a new technique, I would learn it quickly. And then completely fail to use it in the challenge that came immediately afterwards. They’d ask “Don’t you remember that thing you just learnt to do using eight blocks?!”, and I’d answer “Yes, I remember! But there are ten blocks here, so obviously I don’t need to use it now.”

During the climax of every children’s film I ever watch, I am convinced that the main character is about to fail. If you stopped at that point and asked me suggest how the story would be resolved, it would take a lot of concentrated effort for me to make a guess. Never mind that every other children’s film in existence has the protagonist succeed with a ‘happy ever after’.

In fact, it’s difficult for me to even identify the ‘climax’ or ‘build-up’ or ‘resolution’ of a story of any kind. I learnt about the basic story arc in primary school when we were taught how to write our own stories. But it’s very hard for me to actually apply that information to other experiences. Even now, I can do it – but it doesn’t come instinctively. Unless I am actively prompted or reminded to try and consider a story in that way, I am unlikely to do it.

Maths is my absolute favourite – and strongest – subject. But I’d often have trouble with the mixed tests that came at the end of a chapter. Suddenly I was no longer doing exactly the same process with different sets of numbers. Now I was expected to look at a question and somehow figure out which processes needed to be done. I have frequently had to ask a teacher for help on a question only to be told something along the lines of “Just use Pythagoras’ theorem… you learnt about that years ago.” And of course it’s obvious when they point it out. But if the question was in a chapter that made no mention of Pythagoras, then my brain simply would not make the link to tell me what information was relevant.

This is also why I often forget things which should be easy to remember.  “Don’t forget to empty the dishwasher tomorrow”, and I nod and agree as mum tells me it when I’m going to bed. Then the next day, the knowledge is just gone. If someone asked me “What did your mum ask you do last night when you were going to bed?”, I would remember immediately. But of course no-one does ask me that, so the information never gets recalled. I can walk past the dishwasher overflowing with plates and still not process the fact that I have an important piece of information about that.

And this is why lists, notes, and reminders are what keep me on track. Without external help to recall and use the right information in the right situations, I would never get anything done.

“Why don’t you…?”

I find this kind of question unexpectedly difficult to deal with. “Why don’t you…?” isn’t the only type of question this applies to – it’s a whole set of questions that have the same effect on me. What they all have in common is a dissonance between a very specific literal meaning, and a very specific intended meaning.

With “why don’t you…?”, the dissonance is like this:

  • Literal meaning: “Please explain why you have not taken this action or why you aren’t going to take it.”
  • Intended meaning: “I am offering you a suggestion in case you haven’t considered it.”

When someone asks me a question like this, my brain glitches out because it can’t decide which meaning to respond to. One part of me knows that the person is just offering a suggestion, and all I have to do is acknowledge that suggestion with a “thank you”, or possibly a “no thanks”/”that won’t work” or similar. But another part gets caught up on the literal meaning. It’s a ‘why’ question, we have to answer ‘why’ questions with ‘because’ and explanation.

So then I freeze because I can’t find a way to reconcile those two possible ways to answer. I often begin to formulate an explanation (in response to the literal meaning), but then stop myself because the explanation will be extremely longwinded and detailed and I know that’s not what the other person wants. Then I have an attempt at responding to the intended meaning with some kind of vague acknowledgement.

Which usually results in a nonsensical conversation like this:

“Why don’t you try this suggestion?”
“Because I… no.”

Observations

I’ve been reading and re-reading the report from my assessment. It’s strangely exciting to know that a near-stranger took the time to write a nine-page report all about me! It’s also really interesting to see the way a professional describes me in terms of autism. I think the most interesting thing to me was the way she described my social communication. I was under the impression than I did a pretty decent job of passing for NT most of the time, but it seems I was wrong!

I was particularly surprised that she included “makes eye contact much less than might usually be expected”. I knew that my eye contact was a bit questionable, especially with new people. But I thought that I made about as much eye contact as most people, just that I found it a bit more uncomfortable and effortful. During the assessment I was very conscious of eye contact, and kept getting distracted wondering if I was making too much or too little, near the beginning. As the assessment went on I think I just gave up on trying and ended up making very little.

I also found it interesting that she described “limited non-verbal communication (facial expression, gesture)” and “little variation in tone or pitch when talking”. Again, I thought I probably passed as fairly NT, but I guess not! In the assessment I had my hands on my lap under the table, because I was nervous and trying not to pick my fingers (I do it less when I can’t see my hands), so I think I think that probably contributed to the lack of gesture.

I was less surprised by the ones about social interaction:

rarely or never asks conversation partner about their thoughts/feelings/experiences”
I guess this was about the bit where she mentioned quilting and I completely ignored it!

although happy to engage in a conversation, social overtures were restricted predominantly to personal demands or related to interests/topics”
My first thought when reading this was “what else are you supposed to have conversation about?” – which I think means that it’s definitely accurate!

At the end of the report, she gave a list of lots of resources to look into. She recommended a few ASD social groups – which is exciting but also very scary!

There is a lot to think about now, but it’s pretty much all good things. So although it’s quite overwhelming, it’s a good kind of overwhelming. That’s a pretty novel experience.

 

Answers

It’s been a long two years since I began to realise there really might be one thing to explain it all.

It’s been a long year since the most intense period of anxiety and burnout of my life.

It’s been a long five months since I first took the leap and asked for a formal assessment.

It’s been a long few weeks since I poured out my evidence and counterevidence to a stranger, and went home to realise just how much evidence I provided.

And now I finally know for sure.

…fulfils the diagnostic criteria for an Autism Spectrum Disorder.

It’s really true. It’s really me. All of my fears and suspicions and theories were correct. All this time I doubted myself, or thought I would have been diagnosed younger, or that I didn’t have enough problems to fit, or that surely someone would have noticed.

But I was right. I have my answers at last.

Alexithymia

Alexithymia:
n. “The sub-clinical inability to identify and describe emotions in the self.”

Quite a common trait of alexithymia seems to be that people misinterpret emotions as bodily sensations. I doubted that I experienced alexithymia because I didn’t do that. More recently, I’ve realised I actually do the opposite. I am far more likely to  interpret a fairly harmless bodily sensation as a threatening and unpleasant emotion. I’m going to write about two of my most common errors, to hopefully help myself to distinguish between them.

Headache – Anxiety

I don’t get headaches all that often, maybe a couple of times a month on average. I get anxious very often. When I have a headache, I get that urgent ‘something is wrong’ sensation that I get from anxiety, so I often assume that I’m anxious. Which then causes more of a problem because my anxiety coping solutions don’t really help when I have a headache. So the headache carries on, and then I keep on thinking I’m anxious which makes me more anxious, and it usually ends up in a hideous spiral that only ends when the headache goes away (usually when I go to sleep – which is harder to do when I’m anxious!).

Here are some things that I am working on trying to remember in order to prevent this from happening. When I have a headache:

  • I usually feel better if I take a painkiller.
  • I usually feel worse if I get up and move around.
  • I am probably drinking a lot of water even though I don’t feel particularly thirsty (years of conditioning that headache must equal dehydration, even though I am probably the most well-hydrated person in my entire family).

When I’m anxious:

  • Painkillers probably won’t make a difference. Might also make me feel worse if the act of taking painkiller is anxiety-provoking.
  • I usually feel the need to be moving around and that will help me stay calm.
  • I probably have a dry mouth but don’t feel like drinking more than sips of water.

Tiredness – Sadness

I’m not often very sleepy during the day. I don’t need that much sleep and I’m not particularly active, so it’s rare for me to be very tired in the daytime. I’m much more likely to be inexplicably miserable, so that’s what I tend to assume. Both cause me to be unmotivated, floppy, and unable to concentrate.

When I’m tired:

  • I might really want to do things, but not be able to concentrate enough to enjoy them.
  • If I lay down on the sofa for a while I’ll probably fall asleep.
  • Physical tasks will be more difficult and daunting than mental tasks. For example, I’ll dread getting up to go to the toilet more than I’ll dread writing a long email.

When I’m sad:

  • I probably don’t feel like I want to do anything. I might be able to concentrate on thinking about something if I make the effort, but I still probably won’t enjoy it.
  • I’ll probably feel physically restless if I lay down for a long time, even though I might not actually want to be doing something else.
  • Physical and mental tasks will be equally unappealing. Or sometimes, mental tasks will be even more unappealing.

Troubles

I’m writing this stuff down in the hope that I will refer back to it next time I’m tired or have a headache – so that I can remind myself that I’m having a fairly harmless physical experience. I’ve known this all for a while, but when I’m actually experiencing it, it all goes out the window. That seems to be a pretty common thing, too. I can understand things in theory, but putting them into practise is a very different matter. Hopefully having this written down to refer to will help me bridge that gap.

Formal assessment

Well, my assessment was yesterday. I still have to wait a couple of weeks for the results appointment. But at the end of the session, the assessor person told me she thought I’d very likely get a diagnosis.

Since the assessment I’ve been doing lots of research about the diagnostic tool that was used, the ADOS (Autism Diagnostic Observation Schedule). It’s been very interesting to find out what the ‘expected’ responses were and how I compared.

Note: If you are expecting a formal assessment soon that might use the ADOS, I would recommend you don’t read the rest of this post. The assessment will be more accurate if you don’t know much about what to expect.

There were several activities involving objects and tasks. I assumed that they were the end in themselves, but of course it turns out they were just opportunities for the assessor to look for certain social behaviours. How very autistic of me to be so focused on the task at hand that I forget what the actual purpose was!

The first task was a simple puzzle. There was a laminated sheet with the outline of the completed shape, and then a set of foam pieces which were all the same shape, to be fitted together. When the assessor gave it to me, she gave me only a few of the pieces and said “Let me know if you need any more bits and bobs”. I thought it was weird that she didn’t just give me all of them straight away, but I didn’t even consider the fact that it might have been deliberate (my mum pointed it out afterwards!).

The task was actually supposed to see how I asked for the extra pieces. I was quite focused on the aim, so I don’t fully remember how I asked. I’m pretty sure I didn’t make eye contact, I think I just said something short like “Can I have some more pieces?” I remember that when I asked for more, she didn’t give me all of them – so I had to ask a second time to get the last ones. At that point, she said something like “It might need all of the pieces”, and I think I just said “Yeah” because – it obviously needs all the pieces!

Another task was to tell the assessor how to brush her teeth, imagining that she had “forgotten how to do everything”. When I looked this up, apparently the instructions are to “show and tell” – and the task is supposed to test how well you use gesture in combination with words. I can’t remember whether the assessor actually used that phrase, but if she did I must have ignored it. I told her using almost exclusively words. The only gestures I used were when I moved my hands in order to remind myself which parts I was talking about – and to check which hand was left and right so that I said the correct one.

Then I had to make up a story using some objects. The assessor got out a box full of things, and then chose five and told her own story with them. Then she told me to choose five of my own and tell a story. I chose a Rubik’s cube, a small red wooden cube, a black feather, a block of white foam, and a purple spiky ball. I had trouble thinking of any ideas for the story. The first thing I said was “This is a baby cube and this is the parent cube” to describe the Rubik’s cube and the red block. It seemed logical because they were the same shape but different sizes.

Then I said “They’re playing catch with the ball” and showed the purple ball moving between them. Then I couldn’t think of what to do next but eventually I said “this is a baby block as well, but it’s older” about the foam block – because it was a sort of in-between size (but not actually a cube). Finally I added the feather and said “This is like a bat, and the baby uses it to hit the ball”. Then I said that was the end. It wasn’t much of a story. When I looked it up, I found that it was testing your ability to assign personalities to objects (which I guess I… sort of did?), and your ability to make a story with a beginning, middle, and end (which I… definitely did not).

The next task was to tell the story from a picture book with no words. The assessor told the first few pages, then gave it to me to carry on. I noticed that she seemed to talk more about intentions and emotions, “The frogs want to go that way,” “The frogs are having fun”. When I carried on, I just described what was happening in each individual picture, “They’re going over some houses,” “They hit a washing line,”. (Yes, the story was about flying frogs). I didn’t really make any connections between the pictures or create an overall story from it.

The last activity was to describe a picture. I was given a laminated sheet that had a photograph of a piece of embroidered fabric showing a scene. I described what I could see in the scene – “There are lots of people around a table and it has food on it.” Then I tried guessing what the scene might be “It looks like it could be a party. Maybe a birthday because there’s a cake, although there aren’t any candles on it.” The assessor asked me where I thought the picture was set, and I said I couldn’t tell because all the people looked different. Then she said something like “It looks like it’s made of fabric. I’ve always wanted to get into quilting like that”.

I thought that was a kind of weird thing to say – why would she start talking about herself in the middle of an assessment about me? So I just ignored it and kept looking at the picture to try and think of more description to add. When I looked up the ADOS, I found that the assessor talking about herself was supposed to be a ‘cue’ to get me to chat. Apparently I was expected to ask her more about it or say something in response.

The rest of the assessment was mostly an interview, with questions about things like emotions and relationships. She asked what things made me happy/sad/angry, which I found really hard to answer. I said I thought being happy was something that seemed to happen more randomly, rather than as a result of specific events. And she asked me to describe how certain emotions felt, which I also found really difficult.

We also talked a lot about childhood, things like difficult making friends and having restricted interests. My mum said that there have been times where I get obsessed with something and don’t want to talk about anything else – she listed lots of examples, past and present. I found that interesting, because I thought that I was pretty good at ‘hiding’ my obsessions. I mostly just want to think about them alone anyway, so I thought I didn’t usually get into talking about them that much – but apparently I do!

It was a very interesting experience, and it wasn’t as stressful as I thought it might be. At the end, the assessor told me she has to get all the information together and consult with a colleague before she can agree on a diagnosis. I gave her a printed list of traits which I had annotated, and she said that would be very helpful. Now I just have to wait until the 11th for the results appointment.

Edges

I think that the edges of myself are not very well-defined. It doesn’t take much for me to lose track of where those edges are.

Other people’s edges are much bolder, so they overwrite mine when they’re too close. Socialising is when I can’t be sure which edges are mine and which are other people’s. Sometimes it’s nice, more often it’s scary.

Strong sensory input is dazzling and makes the edges too dim to be seen. Sensory overload is when the edges become completely invisible and all I can do is hope that they are in the last place I saw them.

Anxiety is when the edges seem to be shrinking in and cutting off the important bits of me, so that I can’t defend myself or block anything bad from getting in.

Meltdown is when the edges are gone completely. They shrink so much that they disappear, and everything becomes a part of me and I can’t escape.

Contentment is when I find something that perfectly fits the shape of my edges, and I can hold it against myself and it becomes – not a shield, not armour – but perfectly fitting clothing. Something that does the job of reminding me where the edges are, so I don’t have to keep focusing on them.

Joy is when my edges swell and grow and envelop everything I care about and it all becomes a part of me and everything is right.