Monthly Archives: September 2014

“I don’t have a preference”

“I don’t know”, “I’m indifferent”, “I don’t mind”. I say these things a lot. Sometimes it irritates people, because they think I’m holding back my opinion for some reason. But when I say things like this (well, when I say anything!) I really mean it.

I have quite strong opinions about some things. Even some things which people think are weird or silly, or things people think are too big and complicated to have a simple opinion about. Put it down to ‘black-and-white thinking’.

Because of this, I’m also really good at knowing when I have an opinion and when I don’t. I don’t really have to pause and think about something carefully before working out whether I have an opinion. I might have to think for a while to work out what my opinion is – especially if I have to make a decision. But otherwise, I can answer very quickly when my answer is “I don’t know” or “I don’t care”.

It’s as if my ability to have an opinion or preference about something is digital – whereas for most people it’s analogue.

I don't have a preference 1

 

The red line is me, and the blue line is most other people. I go from “not caring at all”, to “caring completely” in one big jump. Whereas most people have a gradual progression from “not caring at all”, to “caring a little bit”, “caring a fair amount”, and so on.

This graph explains why there are some things I don’t care about at all, which most people do care about a reasonable amount. And also why there are some things that people think I care too much about. And it explains why it’s very easy for me to work out whether or not I have an opinion on something. Which side of the line does it fall on? Whereas other people have to decide what level of opinion is worth expressing or worth doing something about – halfway up? A quarter? Three quarters? It must be a nightmare!

Of course it’s sometimes annoying to have a digital experience of opinions and preferences, too. Sometimes people ask what I’d prefer and I say that I don’t mind and they just refuse to believe me. “You must have some preference!”, “Even just a little bit?”, “It’s OK for you to choose what you want!”.

Sometimes not having a preference makes decisions a lot harder – maybe this is why it takes me a long time to make decisions in the first place? It would be a lot easier to decide how to do things if I had some kind of emotional response to the options. That’s probably part of the reason that I rely on habit and routine, too. It’s a lot easier than contorting my digital thinking to try and formulate an opinion about something minor.

And then there’s all the things on the other side of the line – the “caring too much” side. Because I often don’t express an opinion, it sometimes surprises people when I do. And they think I’m exaggerating or joking or being silly for caring so much about something.

It seems like the ‘conclusion’ for this is going to be much the same as usual: communication and acceptance will improve anything! If people understand and believe me when I say that I do or don’t care, then… everything would be fine, I guess.

Learning in patterns

I wrote a post about ways of thinking a while ago, referencing Temple Grandin’s “thinking in pictures” quote. Since then, I’ve read her book, The Autistic Brain. I was really excited to find there was a section about thinking styles. She mentioned that lots of people had criticised her claim about all autistic people thinking in pictures. Then she went on to talk about a third thinking style. Words, pictures, and patterns. Patterns is very clearly the way I think – I’m really excited to find that I independently came to the same conclusion as a well-respected researcher! (albeit using slightly different words).

I’ve talked before about how I’m not very good at generalising. I can’t learn from examples, because I can’t turn the example into an overall concept in my head. I either need lots of examples (and I mean, an impractical amount of examples: too many to be reasonable), or I need the overall idea explained first. Examples are a way for me to check that I’m understanding right, but nothing more than that.

The combination of these two things: thinking in patterns, and having trouble generalising, means I learn in a bit of a strange way compared to some other people. Other people’s understanding will gradually increase in little steps as they gain more examples and information. Whereas my understanding will stay at absolutely nothing for a long time, and then suddenly jump up to ‘completely understanding everything’. There isn’t any in-between. If I there’s even one small element of a topic that I don’t understand, then it means I don’t understand any of it.

This has confused teachers (as well as other people), because I can seem to get irrationally upset when I don’t understand something very minor. Because for me, it’s not just “I don’t quite get how to do this specific type of equation, but I have the general idea of most of the rest of the topic”. It’s more like “I don’t get this specific type of equation, so I have no overall system which encapsulates everything, so I have no way of understanding any of it”. It’s not me being over-dramatic or exaggerating, it’s a genuine difference in the way I learn. I am unable to understand something bit by bit, it’s all or nothing.

This does have its benefits when I want to explain something to someone else. If I understand the whole topic, then I have it fixed in my head. There’s a complete system which contains every part of it connected together. So I can give an overview of the ‘shape’ of the whole system, and I can also focus on smaller parts if someone has trouble with a specific bit. And I can look at it from different perspectives to try and find new ways of putting it if someone doesn’t understand at first.

I have only known a few of people who explain things in the way that works for me. Those I can remember: my secondary school science teacher, my A-level maths teacher, and my dad. They are all people who either ‘get’ that I need patterns to understand, or who naturally think in patterns themselves. Any time I’ve tried to learn something that hasn’t been from these people, it has involved me working desperately hard to process all of the information at once and distil a pattern from it myself. It’s inefficient compared to the way most people learn things, but I’m pretty good at it by now.

Anger

When I was little, I was told that I had an ‘anger problem’. It was quite an understandable thing for people to think. I frequently got into aggressive screaming meltdowns for seemingly minor reasons.

Of course, the causes didn’t seem minor to me at the time. Even when I look back now, I feel myself getting angry about the situation as it happened. Mostly,I got angry when things weren’t fair. That covered a lot of possibilities:

  • My ‘friends’ (and they are a story for another day) decided they didn’t want to play with me for no apparent reason.
  • I had to do chores that my brother didn’t have to do.
  • I didn’t get a say in a decision about something.
  • I was punished  for breaking a rule which served no purpose.
  • I was told to do something without explanation.

As you can probably imagine, those are all things that happen quite a lot in the life of a small child. So, I got angry a lot. In the worst periods of junior  school, teachers put me on a system where I got a reward if I managed to go a whole week without hitting anyone.

But being punished just made things worse – because I believed my behaviour was justified and so I was being treated unfairly. If my friends picked on me and I hit them in retaliation, I would get in trouble and they wouldn’t. So what was I supposed to do the next time it happened? I already knew that teachers wouldn’t punish them for picking on me, so I had to take justice into ‘my own hands’ (literally).

The problem with the way teachers treated me is that they didn’t look for an underlying cause. They didn’t even consider that there might be one. To them, I was just a mindless little kid who was acting out for no reason at all, and the only way to solve the problem was basic classical conditioning and punishment. But that wasn’t the case at all. In my small but extremely rational mind, my behaviour made absolute sense. Punishing me for it wasn’t going to change the fact that I had perfectly logical explanations for what I did – in fact, punishing me just contributed to my own reasoning.

I don’t remember if teachers ever really asked me why I’d hit someone. Probably even if they did, I wouldn’t have been able to express my logic in a way they could understand. But that’s not the point. Just because it’s difficult to understand a person’s communication, doesn’t meant you should assume they aren’t communicating anything. Can you see where I’m going with this, yet?

Yeah, it’s about autism. Autistic people – especially children – are assumed to be unable to communicate. Or worse, assumed that they don’t have anything to communicate in the first place.

I wasn’t a very ‘obvious’ autistic kid (otherwise I probably would have been diagnosed earlier!). But when I look back, it’s clear that a big chunk of the problem surrounding my behaviour and treatment at school was autism-related. My thought processes were different: that’s why I was bothered by things that seemed inexplicable or minor to other people. My emotions were different: that’s why I didn’t really have ‘degrees’ of anger which I could use to cool down. And most significantly, my communication was different: which is why teachers thought I was lying when I was telling the truth, and thought I wasn’t communicating anything even though I was trying my hardest.

When I look back, it would have been pretty simple for people to help me if they knew what to do. This isn’t necessarily advice for helping angry autistic kids (although if it helps, then all the better) – but it’s my thoughts about what would have helped this particular angry autistic kid.

  • Ask me why I’m angry. Give me time to answer. Encourage me to think about it carefully and write it down in my own time. Believe the answers I give, even if you don’t think they make sense. Take them seriously, even if you think they’re silly or minor.
  • Work with me to figure out why these things bother me. Can I find ways to understand them which will make me less angry? Can the situations be changed overall? Can they be prevented entirely?
  • Explain the situation clearly. Explain if and why I’m being punished, and exactly how I can avoid being punished in future similar situations. Explain other people’s reasoning behind the things which are making me angry, even if you think it’s obvious.
  • Tell me specifically what I should do when something bothers me. Tell me exactly why it’s a better option than my previous response of getting angry – for example, the problem will be solved more quickly and easily if I tell a teacher than if I try to deal with it myself. Then follow through on those promises, every time, no matter how seemingly small the things that’s bothering me.
  • Give me a break. Being angry really takes it out of you. Don’t push me to join in with activities again quickly. Accept that I’m going to be tired and upset for a long while.

The funny thing is, I don’t get angry much these days. But it’s not because I learnt amazing anger management techniques from my teachers (hint: that didn’t happen). It’s because unfair things don’t happen to me much anymore. Because most of the time, people explain things to me, and assume that I can understand them, and believe me when I tell them things, and trust my reasoning. Those abilities haven’t changed much in the last ten years for me. Kids are clever and thoughtful and self-aware long before most people think. And I reckon that acknowledging that would solve a whole lot of problems in one go.

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.

Alternative autism criteria

I’ve written a much-improved updated version of this. Click here to see it!

Since my diagnosis I’ve been irritated with all the information about autism using the ‘triad of impairments’. If you haven’t heard of it (where have you been?!), the triad is “social communication”, “social interaction”, and “[social] imagination”.

There are so many reasons why the triad of impairments is flawed. It doesn’t reflect any actual diagnostic criteria, so there’s no need for it. The distinctions between the three sections are vague and poorly-defined, so that pretty much any trait could fit into any one of them. Then there’s the fact that it actually misses out many of the most significant traits, because it only focuses on external social elements (because… *sigh*, it was written by NT people who just described the traits most apparent to them).

So, I decided to write my own. This isn’t a set of diagnostic criteria – I’m not a professional and I don’t know how to diagnose autism. It’s simply an overview of common traits with examples, divided into (what I think are) logical categories. If I could have my way, every leaflet about “what is autism” would contain this – rather than the useless and nonsensical triad of impairments.

Social

  • Differences in body language and nonverbal communication. E.g.:
    • Reduced eye contact.
    • Reduced variation in vocal tone.
    • Unusually loud or quiet speech.
    • Different or reduced use of gestures.
    • Reduced use of facial expressions.
  • Differences in verbal communication. E.g.:
    • Preference for speaking in ‘paragraphs’ over back-and-forth interaction.
    • Difficulty using words in some situations, such as under stress.
    • Use of echolalia and/or scripts in communication.
    • Preference for text-based communication.
  • Differences in interaction and social relationships. E.g.:
    • Reduced desire for social relationships.
    • Preference for one-to-one or small group interactions.
    • Preference for functional and pragmatic interactions over social ‘chit-chat’.
    • Difficulty forming or maintaining social relationships.

Sensory

  • Hypersensitivity to one or more senses or specific sensations. (e.g. bright light, specific textures, strong smells). Demonstrated by pain, illness, discomfort, or avoidance of certain sensations.
  • Hyposensitivity to one or more senses or specific sensations. (e.g. pain, temperature, taste). Demonstrated by failure to notice, react to, or distinguish certain sensations.
  • Sensory seeking. Demonstrated by stimming (self-stimulation) behaviour in one or more ways. E.g:
    • Fascination and staring at lights or moving objects.
    • Pressure from weighted objects or body weight.
    • Vestibular sensations such as swinging, rocking, and spinning.
    • Moving limbs and/or objects such as hand flapping, fiddling with toys, hair twirling.
    • Desire for specific smells or tastes.

Rigidity

  • Intense and/or specific interests. E.g.:
    • Spending the majority of time focused on few interests
    • Interest in a very narrow, unusual or specific subject area.
    • Desire to learn all facts and information about interests.
    • In-depth and expert knowledge of interest area.
    • Interest primarily enjoyed alone, without consideration of social implications.
  • Preference for routine and sameness. E.g.:
    • Specific routines for days, weeks, or certain activities.
    • Distress and disorientation when routines are disrupted.
    • Preference for doing things the same way as always.
    • Preference for planning things carefully in advance.
    • Anxiety in new or unfamiliar situations.

Cognition

  • Difficulty with executive function. E.g.:
    • Poor short-term/working memory.
    • Difficulty planning and executing a series of actions.
    • Difficulty identifying and solving problems.
    • Difficulty concentrating on relevant information.
    • Difficulty starting, stopping, or changing activities.
  • Differences in understanding or processing emotions. E.g.:
    • Mistaking physical sensations for emotions, or vice-versa.
    • Difficulty identifying or naming own emotions.
    • Difficulty recognising or understanding other’s emotions.
    • Preference for using logic over emotions in decision-making.
    • Do not externally express emotions.
  • Detail-focused thinking style. E.g.:
    • Tendency to notice specific details before, or instead of, overall ‘big picture’.
    • Difficulty generalising from specific examples.
    • Difficulty noticing implied messages.
    • Skilled in identifying minor errors such as typos.
  • Love of patterns and systems. E.g.:
    • Talent for systematising subjects such as music, mathematics, science, puzzles, languages.
    • Enjoyment from organising and arranging information or objects.
    • Skilled in recognising patterns.
    • Preference for learning from systems before examples.

Education

I recently had a disappointingly familiar experience. I was referred to a group CBT course – not group therapy, but more of a series of small group lectures to learn some techniques and exercises.

After a few of the weekly sessions, a recognisable feeling started to creep over me. The content was interesting enough, and the course was not run particularly badly. But I absolutely knew that it was not providing anything for me. I could learn the information much more efficiently, quickly, and enjoyably, if I was at home alone and not in the lecture itself.

I suppose a lot of NT people find it helpful to learn in groups. At the CBT course, the other participants seemed to enjoy telling and listening to stories and ideas from each other. But all I could think when they were talking was “When do we get back to the point? I’m not learning from this.”

This is an experience I have had repeatedly throughout education of all kinds. Initially, I can see the appeal of interacting with people who have similar interests, and of being able to directly interact with the educators themselves. But that appeal is extremely short-lived and soon runs dry when I’m faced with the exertion required to keep it up.

I have to push myself to go out, travel to wherever it’s happening, find my way into the right room to settle in, interact with my fellow learners, interact with the educator, keep up with verbal explanations, keep still throughout the lesson, concentrate solidly with no chance of a break, then lots more interaction followed by finding my way out and back home again! And all of this in exchange for learning something which I could understand much more quickly and easily if I just read written/visual information alone and in my own time.

I can understand the appeal of a social situation involving a certain subject, but not when I’m learning the subject. For me, those two things have to happen separately in order to be efficient or enjoyable. If I’m in a situation which has both, I have to just pick one to focus on (generally the learning), and I still find it much harder because I’m distracted by the other element (i.e., the people socialising around me).

I’m starting a distance-learning degree soon. It will be an interesting experience, because it seems like it will be the perfect learning style for me. But I’m wary of getting my hopes up too much. Maybe I actually need something that’s in-between traditional classroom learning and completely solitary learning? I guess I’ll find out.

Noticing mood

Mood vs emotion

I don’t know if there’s an ‘official’ psychological definition for the distinction between these two. But for the purposes of this post, I’m making my own. Emotions are short-term things, which are typically more intense and often caused by something external. For example, I might be angry because I can’t find something I want. Moods are long-term things, which are typically less intense and more internal. For example, I’m depressed over several weeks of being vaguely sad and hopeless.

I actually have a lot of trouble with the distinction, though. I can logically define it like this, but that doesn’t really help me see it at the time. When I’m temporarily sad (a short-term emotion), I often mistakenly assume that my mood is bad and will be bad for a long time. In fact, I think I’ve figured out that my main problem is simply being unable to notice moods at all.

Mood blindspot

There are a lot of reasons why it’s hard for me.

  • Moods only exist in the long-term. So I can’t just go “I am in a negative mood at this moment”, I have to be aware of my state over several hours, days, or weeks.
  • Emotions are more obvious than moods. If I’m having a specific emotion, it overwrites the mood and makes it harder to detect.
  • Emotions and moods are similar but not quite the same. It’s very hard to tell what is one or the other.

Those aren’t the only reasons I can’t ‘see’ my moods, but they’re some of the main ones. It’s pretty hard for me to even figure out why I have trouble with it – it feels like I don’t have enough words in my vocabulary to explain.

Workarounds

I know that I have moods, but I can’t actually identify them internally. I have to just try and pick up on them via the things that I can notice:

  • Emotions. E.g., if I’m having sad, angry, or negative emotions a lot, it means my mood is more likely to be negative.
  • Actions. E.g., if I’m tired a lot and don’t want to do things, it probably means my mood is negative.
  • Thoughts. E.g., if my default thoughts are things which sound negative (like “Life is hopeless”, or “I’m a terrible person”) – even when I’m not feeling particularly sad – I can assume they’re down to my mood.
  • Other people. Often, my parents are the first to notice that my mood is getting low. They’ll ask why I seem down, even though I don’t think I’m in a sad emotion – that’s a sign that my underlying mood is low anyway.

I’ve tried tracking my mood in the long-term, because I thought that my main problem was memory (it’s hard for me to remember both emotion and mood states that I’m not in). But I realised that’s not actually the problem, because I can’t give a momentary measure of mood. My moods don’t exist ‘in the moment’, only the long-term. I can’t say, “my mood score has been below zero all week so I’m getting depressed”, because I can’t measure my ‘mood score’. I end up tracking my emotional state, which is not a particularly good indicator of overall mood, and just ends up confusing me.

I don’t have a solution for this. I don’t know what other people do to identify their moods. Maybe other people have an innate sense for it. What difference does it make, anyway? Do other people change their behaviour when they identify a certain mood? Maybe they do. It certainly feels like I’m missing some ability that other people seem to have, but I can’t be sure what would be different if I did have it.

Educational accommodations

I’ve recently found myself in an interesting situation. I’m about to start a distance-learning degree, and it’s the first time I’ve entered education with a formal diagnosis behind me. Suddenly I’m being inundated with help and accommodations that I don’t know what to do with!

It’s strange. The only experience I have with education is that when I have zero accommodations, it’s clearly not enough. But I don’t actually know what kind of accommodations I do need, or how much will be enough. So I’m having to try and imagine what things might help me, when I don’t actually have any evidence for it. Most people my age who are starting a degree will have plenty of history to rely on: “In college, they gave me an extra week on all my assignments”, for example.

But I don’t have that. All I have is a history of a few desperate attempts to get me to attend my exams by offering me the chance to sit in a smaller room or take a break. None of which were particularly effective by themselves.

The other complicating factor is that distance-learning is already very different from any education I’ve had before, so I can’t directly compare it to my previous experiences. Usually the most stressful aspect of education is sitting in lessons themselves – and there won’t be any lessons this time.

I’m left doubting whether I will actually need any accommodations at all  – or whether the different experience will be enough to help me cope. Only time will tell, I suppose.

Communication

Problems with communication are universal among autistic people, but they can be expressed in very different ways. One thing that seems to be quite common is a temporary inability to speak – sometimes called selective mutism or being nonverbal. I don’t think this has ever happened to me in the simplest sense. But I’ve been thinking about it a lot, and I now realise it sometimes does happen, but gets expressed in more subtle ways.

Specific topics

Sometimes I have trouble putting a certain thought into words. Probably as a result of my not-words-or-pictures thinking style. This is most likely to happen when I’m trying to talk about an emotion or something related, and when I’m trying to think as I go along (rather than explain something I’ve been thinking about before).

My response to this depends on a lot of different factors. I might be able to push through it, find a way to express myself with disjointed words and diagrams. I might just give up trying, and tell the other person that I can’t work out how to say it. Often I can ruminate on something for a while and eventually be able to write down the words, because there’s much less pressure than speaking.

Overload

This is a major aspect of shutdown – my way of recovering from an overloading experience. In this case, it isn’t finding the words themselves, it’s all the other aspects of conversation. The social stuff like body language and tone and thinking about the other person and figuring out the meaning of ambiguous questions… When I’m already low on energy it becomes very difficult and very unappealing for me to waste the effort on non-essential interactions.

Most of the time when I feel like this, I’ll just isolate myself while I’m shutting down so that I can recover. But if I’m unable to do that and people try to interact with me anyway, then I will be very withdrawn. I’ll probably be slow to react, and respond to questions very briefly. I’ll definitely make no effort to continue the conversation, and end up seeming irritable if people don’t leave me alone.

“NT-passing-mode”

This is probably the least noticeable form of being ‘nonverbal’, but also probably the most significant to me. When I’m in a social situation, a lot of my behaviour becomes automatic. I suppress natural behaviour and change the way I act without even consciously realising it. The extent of this varies depending on the situation. If I’m with just my close family, then I act pretty naturally and consciously. If I’m in a big party full of people I don’t know, I’m barely controlling my actions.

This also includes speech. I say things quickly and automatically, and without actually meaning anything. I often have strange experiences where I hear myself answering a question and inside I’m thinking “that thing I just said is the exact opposite of my real opinion”. I also find myself trying to backtrack when someone is bothered by what I just said, but it’s very hard to explain! Most people don’t really understand that my mouth can just say words and they sound like they mean something but it has nothing to do with what my brain is really thinking about.

Internal – External

When I think about those last two types, I’m realising they are pretty much the same response internally. The only difference is what external context I’m in. They are both caused by being socially overloaded and make it hard for me to spend energy on processing social speech. If I can get myself into a fairly safe situation, I can voluntarily shutdown and stop trying to do the speech thing.

But if I’m in a social situation when I’m already low on energy, then I get stuck in “NT-passing-mode”. I still don’t have the energy to properly work out what to say or how to say it. But some part of my brain has this instinctive skill (probably learnt to try and stop myself seeming ‘rude’ in social situations) of making it look like I’m socialising normally. It only becomes obvious if you look very closely – you would realise I’m saying things I don’t mean or that don’t quite make sense. It’s like a robot that can put together words and phrases so that they sound plausible, as long as you don’t try to think too carefully about what they actually mean.