Monthly Archives: July 2014

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.

Sense of direction

Or rather, lack of it. Contrary to what you might expect, this doesn’t mean I get lost a lot. I have absolutely no innate ability to tell where I am or what direction I need to go to get somewhere.  So I’ve learnt to compensate extremely well by doing two things:

1. I memorise routes to important places.
2. I read maps well.

I have a mental catalogue of routes: home-college, home-town, town-therapist, etc. If I need to go between two places which don’t already have their own route (e.g. from home to therapist), I ‘hop’ between existing routes (first home-town, then town-therapist). I do that even if it means I end up going out of my way and a much more inefficient or illogical route overall. If I tried to go the shortest way and ignore my memorised routes, I would definitely get lost. I’d end up wandering aimlessly until I found myself back on a familiar route, and then I’d track back along them until I got where I wanted to be. I know because I’ve unwisely tried it on a handful of occasions.

My mental route catalogue could be compared to bus routes. Buses only go between defined locations. If you want to get to somewhere further away, you have to hop between buses on those defined routes, even if it means you end up going a roundabout way to get to your destination.

My other method of compensation is map-reading. I look at maps before I go anywhere new – even if that new place is a five-minute walk from home. I really like maps, and I’m good at reading them. I’d much rather be the person looking at the map than the person driving the car (even if I could drive!). Because when I’m reading the map, all I have to do is decode the map itself, which is designed with very strict and clear rules. The person driving the car does the more difficult job of converting the map code (“There’s a church on the left and then you take the next right turn”) into the real-world navigation.

If I’m travelling on my own and have to do both jobs, then I usually use ‘Google Street View’ to virtually follow the route I’ll be taking in advance. That allows me to remember the exact images of important parts of the route – like knowing what that particular church looks like so that I can easily identify it when I get there.

When I read Musings of an Aspie’s post about learning her way around a new place, I was amazed by how much I related to it. I’d never considered myself a particularly detail-oriented thinker before reading it. But now it’s pretty obvious that my problem with navigation comes from seeing details first and having trouble connecting them into an overall concept. It’s the same kind of process that makes me bad at generalising.

This is really just another area that justifies my use of planning and preparation. Some people might think that it’s unnecessary or overkill to carefully study a map before a five-minute walk from my house. But it’s just my way of learning to compensate for something most people can do instinctively. And, hey, it means I’m really good at map-reading.

Empathy

Empathy is a controversial topic among autistic people. Most professional opinions say that we lack empathy. But a lot of autistic people argue that they actually have an excess, while others say they just express it differently, and still others agree that they have less empathy than neurotypical people.

What the hell is empathy anyway?

Honestly, I don’t think I can answer this question (I seem to start a lot of my posts like that) According to Google dictionary, empathy is:

the ability to understand and share the feelings of another.

But the definition is really much broader than that. The meaning of the word ’empathy’ varies so much depending on the context that it’s become almost useless. These are just some uses of the word empathy that I’ve seen:

  • Involuntarily taking on the emotions of another person.
  • Identifying the emotions of another person.
  • Caring for another person.
  • Feeling desire to help another person.
  • Understanding the reasons for another person’s emotions.
  • Choosing to share someone else’s emotions.

…and lots more. So how are we supposed to figure out whether autistic people have more, less, or different empathy – when no-one seems to be able to agree on what empathy is?! I’m going to break down some separate elements and talk about them, to try and avoid having to use a word with such a fuzzy definition.

Absorbing other’s emotions

This is something I definitely experience, and I know a lot of autistic people have described it too. When I am around other people, I involuntarily pick up on their strong emotions. This isn’t in the ‘neurotypical empathy’ sense of thinking “That person seems sad and I care about them so I am sad for them”. It’s more like “Why am I suddenly sad? Did something bad happen to me? Oh, right, I guess someone nearby must be sad. *confused face*”

I guess some people might find it hard to imagine being able to absorb another person’s emotion independently of recognising or understanding that emotion. But that frequently happens to me. And I don’t have any kind of ‘volume meter’, either. If someone has a slightly Bad feeling, I get just as stressed as if they have a very Bad feeling. It can be very jarring when I realised I’ve picked up on someone’s negative emotion, and then find that they have suddenly cheered up (because they weren’t feeling that negative in the first place) – but I’m still left feeling negative for no actual reason.

For this reason, I can get very defensive when other people are emotional around me. Not defensive in the sense of trying to avoid criticism, but in the sense of trying to protect myself from an actual threat. When someone is upset, my automatic response isn’t “try to cheer them up”, it’s “get away from the bad feeling”.

Recognising other’s emotions

This often happens at the same time as, or after, the section above. I can fairly instinctively recognise whether someone is feeling broadly negative or positive. It’s identifying the subtleties that takes more conscious effort. I don’t really know how to tell the difference between ‘angry’ and ‘sad’ if there aren’t contextual cues (e.g., a family member just died = more likely to be sad). I can score well on those ‘eye reading’ tests because they involve extremely exaggerated (and generally unrealistic) facial expressions. I know that a frowny face looks different to a sad face. But most of the time when someone’s angry or upset, they aren’t doing much with their face (at least not much that I can see!).

So I guess I sometimes have trouble with recognising other people’s emotions. I use context and reason to work them out, so without that I can get pretty stuck. This means I usually ask a lot of questions like “Are you angry?” or “Why are you stressed?”. My default response to not understanding something is to try and obtain enough information to understand it. Apparently some people find this irritating, though.

Understanding other’s emotions

This usually comes together with recognising. I use context to work out what someone is feeling, because the context tells me why they are feeling something. So if I can’t tell what their emotion is, I probably don’t understand why they’re feeling it either.

This is another area where I ask a lot of questions to compensate. “Why would you be annoyed about that?” “Why is this a problem?” “Is that a bad thing?”. Again, it irritates people sometimes.

Responding to other’s emotions

Because of my aforementioned ’emotional defensiveness’, I’m likely  to want to avoid someone if they are being emotional. I know that when I’m upset or angry about something I generally don’t want anyone to do anything. Being upset is an internal thing that just needs to be over with so things can carry on as normal. Once the emotion is finished, then the underlying problem (if there is one) can be fixed logically.

If I manage to overcome my urge to escape the emotional person, then my next response is to go straight to the logical fixing step. Find out exactly what is wrong so that I can find a way to fix it. Fixing it will make the other person happy (which is good if I care about them because I want them to be happy), and also remove the threatening negative emotion that’s attacking me. What is there to lose?

But I think a lot of people disagree with that, too. I guess some people find the emotion itself an important experience, rather than just an inconvenience. I find that pretty hard to understand. I find it especially hard to understand when they find the emotion an important social experience. What are you supposed to do when someone is upset and they don’t want you to fix the problem? What else is there to do? It just seems awkward, like sitting next to someone while they’re on the toilet – It’s not like you can help out.

Theory of mind

I guess in conclusion, I’d say that my experience of empathy is just different to NT people. I wouldn’t say that I have more or less, because it doesn’t seem like a measurable quantity to me.

I think that pretty much everyone starts off assuming that everyone thinks the same way as them. We all start off life not even understanding the concept of other people as separate beings, so it makes sense that we have to gradually learn it. And the logical place to start learning is from our own experiences.

Most neurotypical people find that most people around them think in the same way. So they grow up learning that “assume they think like me” is a fairly good bet to understand another person.

In contrast, I am wired differently to most people I meet. So I’ve spent my life learning that “assume they think like me” is not particularly reliable. I’ve learned ways of compensating (like my incessant asking of questions), but they aren’t perfect (turns out that people wired differently to me often aren’t keen on incessant questions!).

I don’t think that autistic people lack empathy. I think we have a different kind of empathy – an autistic kind. But because we’re generally in the minority, our kind of empathy gets ignored or misunderstood or pathologised. Maybe it’s time that neurotypical people start trying to learn our type of empathy, instead of insisting we learn theirs.

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.