Big news and important conversations

I have trouble with important conversations. I’m sure everyone does, really. That’s why they’re important after all: because they’re difficult but have to happen anyway. But I think the trouble I have is sometimes different to other people.

Recently, I got some exciting news – a knitting magazine commissioned me to design a pattern. When I shared the news with my family, I’m pretty sure I did it wrong! I mean, I didn’t upset or offend them or anything. But when I told my brother, he exclaimed that I didn’t tell him as soon as he came home and instead waited until a bit later. And my mum said “You never tell us anything!” because the news was surprising.

It was just a regular example of autistic-NT mistranslation. I’ve been thinking about it a bit, and I still can’t figure out what would have been different for them to not have reacted in those ways.

How are you supposed to make news less surprising? Should I have eased into the conversation by saying “So… I’ve been knitting a lot lately…”? The main point is still pretty much one sentence-worth of information, so I don’t see how you could do it in a less abrupt way.

And it’s really hard to know when is the right time to initiate a conversation. Should I have blurted it out the moment my brother walked through the door? Surely not! I thought that I was waiting an appropriate time so as not to seem self-centred and to let him settle in back at home before bringing up something major.

I’m not really bothered by this. I’m perfectly aware of the fact that it’s hard for me to communicate with people, and sometimes it goes wrong and sometimes I’m not always sure how or why it went wrong. I just find it interesting. I guess this is an area where I’m missing out on the innate rules that other people seem to have. Rules like:

  • How to correctly judge the importance of different topics.
  • How to talk about topics of different levels of importance.
  • Which levels of importance are required information for which levels of relationship.

This is yet another reason that I generally prefer text-based communication. It’s so much easier to introduce a new topic via, e.g. email or text. It’s perfectly natural to add a new point whenever you think of it. You don’t have to worry about choosing the correct time and situation for the other person to talk about it, and worry that they might be busy or stressed or distracted. They get to make that decision, because the interaction is delayed and so they can choose the right time to work on their response. It seems so much simpler that way. In a face-to-face conversation, both people are trying to carefully think about both people at once. That’s twice as many people to stress about!

Seasonal excitement

I really like christmas. I also have also had a pretty complicated relationship with it. That relationship changed a lot over time and there are some weird nostalgia-like feelings when I think about the way it’s changed, which then adds yet another layer to the complication of emotions.

(sidenote: I think “complication” should definitely be the correct collective noun for emotions)

When I look back, I can describe my experience of christmas in some fairly distinct stages.

Childhood magic

This was the first ‘stage’ of my christmas experience. My earliest christmas memories are of indescribable excitement, eating chocolate all day, getting new toys, waking up before dawn with a rustling stocking at the end of my bed… all the typical childhood joys.

Dying magic

This was the part where childhood naivety started to run out. It corresponds with the time I learned Father Christmas wasn’t real, but also when I stopped being so desperately interested in toys or sweets. I have some fairly negative memories from this period. Times when I was still instinctively excited about christmas: often for months in advance! But then when the day came, I realised that nothing could live up to the mythical standards I was imagining. And it was over so quickly, after pinning all my expectations on that one day. Then I’d be left disappointed with the anticlimax, and miserable that I wasted so much time and energy being so ‘childishly’ excited for something so appaently unremarkable.

Giving

I created my own solution for the lost magic: giving presents. I’d spend forever planning and organising gift bags with sweets and small toys, deciding exactly what to give everyone and how to present it. This allowed me to be in control of my own sense of excitement. I was no longer waiting for an unknown to fulfil my hopes, because I was the one who knew what I was giving.

Acceptance

This phase started the most suddenly out of all of them. One year I was so depressed that I was barely able to comprehend the idea of a future, let alone the idea of looking forward to or planning for an event like christmas. When it eventually happened, it turned out to be one of my most content and enjoyable christmases of all time. This is when I realised what christmas is really about for me.

Even if you ignore all of the planning, presents, giving, receiving… (although all of that can add to it!). For me, the point of christmas is to find a way to make it through the darkest nights of winter. It’s so instinctive: when it’s dark and cold and times are hard, we get together to keep warm and eat and play and make our own lights in the dark. Nothing else really matters.

I’m looking forward to christmas this year. But I don’t feel bad about looking forward to it, like I used to. I’m not looking forward to one short day and a bedroom full of new toys. I’m looking forward to the uniquely human way of dealing with a cold and dark season. I’m looking forward to just existing in the company of all the most important people in my world. I’m looking forward to enjoying the frost and rain from a warm, bright place. I’m looking forward to creating our own reasons to be happy, for ourselves and each other.

Choices

Recently I’ve been thinking about my academic future. I started a distance-learning degree in October, and I quite quickly decided to switch from part-time to full-time. Which means deciding which course/s to add to my workload, because the degree is totally open – so every course is optional.

The course I’m already doing is in science. The main things I was torn between for my next course were maths and psychology. Maths has always been my best and favourite subject. But psychology is important to me because I want to learn about how people – and especially autistic people – work.

At first glance, it seems like maths should be the first choice. It’s been my strongest subject since before I can remember. Anyone who knew me as a kid would always say maths is what I “should” be doing. And I can understand that. It’s even what I think instinctively. But when I think about it a bit more carefully, that’s not the case.

Maths is really important to me. It’s pretty much the first language of my brain. When I reach for an analogy, I reach for mathematical concepts without even noticing. When I’m trying to find a way to understand something, I’m really finding a way to turn it into maths so that it can fit in my brain.

But that doesn’t actually mean that I should be studying maths, or that it’s necessarily my favourite or most important subject. A person who thinks in words does not assume that they want to study language. They use language to process whatever they do study. It’s the same for me, with maths. No matter what I learn or think about, I will be using maths constantly. So I don’t need to worry that, if I don’t study maths, I might lose one of my favourite subjects.

Whereas that is more likely to be the case with psychology. I think about autism a lot, but it’s the subject of my thoughts – not the language of my thoughts. Which means that if I do want to think about autism, I have to actively decide to.

So, I’ve decided on a psychology module. Part of the reason I’m posting this is so that I can read back over it if I start doubting my decision again. But I don’t think I will!

“Everyone feels that way”

This is one of those seemingly small things that really irritates me. It’s such a natural response for a lot of people when someone talks about something difficult, but it absolutely always makes me feel worse.

It’s never true. I mean yeah, a lot of things are pretty common among a lot of people. But nothing is completely universal to everyone. So it’s always an oversimplification and an exaggeration.

It probably means you don’t understand. I don’t think I’ve ever listened to someone talk about an experience and said (or thought), “everyone feels that way”. If I ever do think that, I always assume that I’ve misunderstood, and that generally turns out to be true. If something seems like it’s universal, that’s probably because you haven’t got all the detail. Even a seemingly ‘common’ thought, like “I’m not very attractive”, is always way more complicated than it seems. At its simplest, it might be true that a lot of people think things along those lines. But when you get down to what’s underneath that thought and what it really means, it’s always unique to any person. So dismissing it as “everyone feels that way”, is really just saying “I don’t care enough to understand the full extent of what you are talking about”.

It doesn’t make me feel any better. This is probably something that varies between individuals. Maybe for some people, knowing a problem is common actually does make them feel better. But that doesn’t work for me. If I have a problem, I want solutions or nothing. And telling me that other people have the same problem does not count as a solution.

It makes me feel weak and broken. This is really the big one. Telling me that “everyone feels that way” has the subtext of “and everyone else handles it better than you”. That might not be the intention, but it’s the way my brain interprets it as the most logical meaning. If I’m talking about something fairly everyday that causes me crippling anxiety, and you tell me that everyone gets anxious about it – the implication is that everyone else gets anxious and does it anyway. And I don’t want to, or I can’t, and that means that I’m weaker than everyone else.

It’s a way of one-upping other people’s problems. It’s great to offer advice based on a similar experience. But when that turns into “my problems are worse than yours”, it gets unhelpful and annoying really fast.

Maybe this is all just one of those mysterious autistic-NT communication barriers. It’s hard for me to imagine being the type of person that finds this helpful, but maybe most NT people do. Otherwise, they wouldn’t say it all the time, right?

Inertia

Inertia

inertia: a property of matter by which it continues in its existing state of rest or uniform motion in a straight line, unless that state is changed by an external force.

Autistic inertia is common but little-known and poorly understood. It lies somewhere on the borderline between catatonia and executive dysfunction.

Inertia doesn’t mean laziness, or not wanting to do things, or procrastinating – although it can look like all of those things. But sometimes it also looks like mania, obsessiveness, or even a burst of motivation. Because inertia just means difficulty changing state, and that original state can be anything. The simplest explanation for how inertia looks and feels: sometimes an autistic person ends up doing something they don’t want to be doing, or not doing something they do want to be doing.

Causes

There are a lot of different possible causes and contributing factors for inertia, and they can be different for everyone.  Part of what makes it difficult to understand or explain is that there can be endless possible causes, which can all lead to apparently the same result. I’ve been thinking carefully about this for a while, and I’ve come up with a list of the most common causes for me.

Energy levels. This is the most catatonia-like one. It’s hard for me to switch from low-energy to high-energy activities, or vice versa. This is part of what’s happening when I’m sitting at home and I need to get up and go out. My brain is stuck in low-energy mode and I can’t properly imagine or work out how to switch into high-energy mode. It’s also what happens when I start doing something like tidying up my room, and I end up spending hours frantically cleaning and organising things. In that situation, I’m stuck in high-energy and it’s easier for me to switch to a brand new high-energy activity, than switch to low-energy mode and take a break.

Time anxiety. I have trouble describing this, but it’s a really big thing for me. I think I have trouble with medium-term time perception. I can abstractly imagine periods like months or years, and I can instinctively understand very short times like minutes or seconds. But in-between lengths of time like hours or days are difficult for me to get my head around. So if I need to start an activity that is going to last for a medium-term amount of time, I can’t properly imagine how long that is. Which makes me really anxious and confused, and so I can’t start the activity because I can’t imagine it.

Decisions. This is probably the most obvious executive function-related cause. Sometimes it’s just really difficult for me to make a decision. Especially if the choices are arbitrary, or uncertain, or I feel like I’m missing information, or any number of other things. One obvious example of this is when I have a chore to do which has an unspecified time limit. For example, I know that I need to wash some laundry at “some point today”. But because it’s not specific enough, and there’s no other way to make the decision, I end up not doing it at all. I can be thinking “I need to wash laundry today”, and sitting around doing nothing, but it’s still difficult to actually make myself do it even with nothing else in the way.

Memory. Another definite executive function thing. My working memory is disproportionately weak, considering my long-term memory and general abilities. If there’s nothing to prompt or remind me about a task, I will often completely forget about it. This can even happen with things that I really want or need to do. It’s not that I deliberately ignore it or pretend not to think about, so that I can avoid doing something. It’s just that it genuinely doesn’t cross my mind unless there’s some kind of external cue.

Hindrances

The simplest and most obvious thing that affects my susceptibility to inertia is general stress. Stress from overload, anxiety, tiredness, or any of the millions of things that can bother me. When I’m stressed for any reason, I’m more likely to have trouble with all of the contributing factors to inertia. Executive function and memory gets harder because I have less cognitive resources to spare, it’s harder to handle any additional anxiety because I’m already anxious, it’s more difficult to override my instinctive energy level sticking when I’m busy stressing about other things.

Having other people around can also sometimes make things worse. I’ve written before about how other people overwrite my edges very easily. When I need help to get something done, that’s great. But when I need to do something a specific way, that’s a problem. If I want to do some university work on the dining room table, and someone else is tidying up – I can get ‘stuck’. Instead of my own energy level getting stuck, the other person’s energy level gets in my way. I have trouble doing a low-energy activity like sitting and working, if there is someone doing high-energy things around me.

Workarounds

I don’t have any easy solutions (sorry, if that’s what you were hoping for). The first step is to accept that inertia is a thing that happens and can’t be completely solved or taken away. But there are two main things that help stop me getting stuck, or get me un-stuck if it happens: prompts, and planning.

Prompts. This one can help with all the causes to varying extents, but most significantly problems with memory. I leave reminders for myself when there’s something I need or want to do. I write lists of things I like doing, to check on when I’m bored. I conscientiously keep a to-do list for even minor tasks. I am in the routine of automatically looking at the calendar when I go into the kitchen. All of these help me dodge around the fact that my brain isn’t very good at remembering things by itself.
Other people can be very valuable prompts, too. They can remind me of things, and can be very helpful when I’m stuck on a decision. If a decision is completely arbitrary, then often the easiest solution is to just get another person to make it for me. It’s not mentally taxing for them, and it makes whatever I’m doing much easier.

Planning. This is really important to help with making decisions, and also the mysterious ‘time anxiety’. When I need to make a decision, I work through it as systematically as possible. I break things down into small parts and logically figure out the pros and cons and the best solution. Doing that helps me avoid the fact that I’m not very good at: a) knowing what I want, or b) instinctive or common-sense decisions.
Planning helps with time anxiety by breaking things down into small enough parts for me to imagine. If I’m going to be spending five hours at a family gathering, I get as much information as I can about exactly what will be happening. That allows me to imagine things in smaller parts, like “half an hour in the lobby with drinks”, and “the speech will last ten minutes”.

Recognising

Inertia is a weird and subtle thing. It was yet another trait that I didn’t initially realise that I had. But realising and accepting that I do experience it has helped me deal with it. It’s never going to go away, and I probably wouldn’t want to – sometimes it’s handy to accidentally spend all day cleaning! But at least I can now understand what’s happening when I don’t seem to be doing what I want to be doing.

Scripting

When I’m with same-age friends, I often end up being the one who interacts with the ‘adults’ and strangers on behalf of the group. It’s usually me who talks to the person at the checkout, or the waiter, or whoever seems to be in charge and know what they’re doing.

It’s strange, because I’m not very good at interacting with people. I can’t really keep up with smalltalk or start a conversation with a friend. And yet I’m much better at those kinds of stranger interactions than my peers.

I think it’s to do with scripting. For a lot of autistic people, scripting is important. It lets us plan out what needs to be said, and prepare for all eventualities. We can use scripts to make sure we know the right thing to say in a certain situation. I’m good at purposeful conversation with strangers because I’m good at scripting. I plan what I need to say and make sure I get my point across with the most efficiency.

But I’m bad at non-purposeful social interactions, for the same reason. When there’s not a specific piece of information that needs to be exchanged, it’s impossible to plan out the interaction. What am I supposed to say? How do I say it? What do I expect them to say in response? It’s a nightmare.

Neurotypical people my age are generally good at that stuff. They seem to like improvising and playing with social dances and games. But because they’re good at that, they also tend to be bad at scripting – because they don’t generally need it. So when they do need to have a functional interaction, it’s difficult – because their usual social skills are less relevant. Tactical dishonesty and subtlety is not very useful when trying to get a specific message across.

I always used to be confused when my outgoing friends became suddenly shy and awkward when trying to interact with a stranger like a cashier or waiter. Over time I learned that their social skills were better suited to social relationships. While mine are better suited to functional interactions.

I think this is quite an interesting example of how autistic people don’t have worse social skills, but just different skills.

Neurodiversity, language, and the social model

Neuro-what?

neurodiversity the diversity of human brains and minds.

The neurodiversity movement is an approach that recognises neurodiversity as natural and positive, similar to natural diversity in gender, sexuality, race, and more. The approach also states that the idea of one ‘natural’ or ‘right’ form of neurology is socially constructed and inaccurate.

Note: people who support the neurodiversity approach (like me!) still use the word ‘neurotypical’. That’s because there is a societal idea of a normal or natural neurology. Yes, in an ideal world, there wouldn’t be. But most people see it that way, so neurotypical is an important word to describe someone whose neurology is considered normal in current society.

Models of disability

A disability is something which limits or reduces a person’s abilities in a certain area. An impairment is something which is different about a person’s body or brain that means it cannot function so effectively. There are several different models used to define and describe the relationship between disability and impairment.

You are probably most familiar with the medical model of disability. The medical model states that a person is disabled by their impairment (for example, a paralysed leg). The way to fix that disability is to ‘fix’ the impairment. The disability is seen as inherently negative, and should be eradicated however possible.

The social model states that a person is disabled by society. The person might have an impairment (e.g., a paralysed leg). But that impairment only becomes a disability when society fails to accommodate them (e.g., not having a wheelchair-accessible entrance). An example of the social model in action is short- or long-sightedness. These impairments are not considered disabling, because glasses are so readily available and accepted.

The social model states that the way to improve a disability is to improve the way society treats a person’s impairment. Note that it doesn’t say people’s impairments must not be cured, simply that cure is not the only option and should not be forced or expected.

Neurodiversity and the social model

The neurodiversity movement is heavily based in the social model. Impairments in human brains (for example, epilepsy, or depression) are not inherently flaws. They become a disability when society does not accommodate them, or discriminates against people for them.

Neurodiversity also adds another complicating factor, though. The social model of disability makes the distinction between impairment and disability, but the neurodiversity approach also includes things which aren’t necessarily impairments at all.

Autism is an example of that. Autism is pervasive and incorporates a person’s whole existence. It consists of a wide variety of different traits, some of which are impairments and some of which aren’t. For example, I consider my predisposition to anxiety to be an impairment. It’s a fundamental problem in the way my brain works, that makes it harder for me to function effectively.

But I don’t consider my atypical communication to be an impairment. That’s just a difference, which is pathologised because autistic people are a minority. If autistic people were the majority, then neurotypicals would be diagnosed with “inability to use concrete language” and “excessive reliance on other people for happiness”.

The key feature of neurodiversity and of the social  model is that the impairment or difference is not the problem. People are diverse in all kinds of ways, and treating those differences as inherent flaws is just a result of society’s harmful views. The neurodiversity approach doesn’t say that impairments shouldn’t be cured, or that people aren’t allowed to want treatment for them. If I could take a magical cure that would put my anxiety on a level with neurotypical people, I would do it in an instant.

The point is that being cured or treated should be our choice , and that if we don’t want to or can’t be treated then society should accommodate us. I can’t cure my anxiety, and so I need other people to help me deal with it. I wouldn’t want to cure my communication differences, and so neurotypical people will just have to meet me halfway when we’re trying to understand each other.

Language

The neurodiversity approach has important implications when it comes to language. A lot of people (typically neurotypical people who are helping or caring for autistic people) support ‘person-first language’ to describe autism. This means referring to someone as a person before stating their disability, a “person with autism”.

You might have noticed that I do not use person-first language. What I use is called ‘identity-first language’. This means referring to autism as an aspect of someone’s identity, an “autistic person”.

People who support person-first language say that no-one should be defined by their disability, that they are a person before they are anything else. It sounds like a noble aim, and they generally have good intentions. The trouble is, the very idea that person-first language is necessary comes as a result of the medical model of disability. It’s bad to define a person by their disability if you think a disability is inherently a bad thing.

Identity-first language accepts that neurological differences and impairments are not inherently positive or negative, they are just aspects of a person’s identity. You wouldn’t dream of saying “a person with homosexuality”, would you? Because that implies that being gay is negative, as well as something that could even theoretically be separated from the person.

The neurodiversity approach says that being autistic is comporable to being gay. It’s an identity, and a natural and value-neutral aspect of human variation. And autistic people should be accepted and accommodated in the same way as gay people. If there are problems associated with being autistic (or being gay), like finding it difficult to communicate (or finding it difficult to get married) – those problems should be accommodated by society.

When you use person-first language, you are saying “Being autistic is entirely and inherently negative”, and “Being autistic makes you less of a person”, and “I have to be reminded that autistic people are human”. Please stop saying those things to us.

My special interests

What is a special interest?

A special interest is like a lens through which the whole world is better. It’s not just really liking something, or even constantly wishing I could be engaging with it when I’m not. When a special interest is active, I actually am engaging with it all the time, no matter what I’m doing. It’s constantly on my mind and everything I experience is processed through it and related to it. And that doesn’t necessarily mean I’m distracted all the time (although I might be). Sometimes it can actively help me concentrate, understand, or enjoy something.

It’s absolutely not voluntary, I don’t choose what they are or how or when they happen. I think finding a new special interest is a bit like getting to know a person. It’s different every time – sometimes the first moment you meet them you know you will get along. Other times they seem unremarkable at first but every new thing you learn about them makes them more interesting. And you can’t decide who you will become friends with and who you will dislike, it just happens.

For me, the key feature of a special interest is about learning. I have an insatiable desire for information about a subject, and the joy of absorbing and organising that information is unparalleled. The more information I find, the more fascinated I become – like a feedback loop. If something ‘gets me started’, then I can easily end up excitedly infodumping everything I know about an interest to someone. But most of the time, I don’t have any need to share my interests with others. In fact, it sometimes surprises people when they learn just how much time I spend thinking about something which I rarely talk about.

I didn’t quite ‘get’ the idea of a special interest when I was first learning about autism. The only information I could find was the stereotype of the autistic kid being obsessed with memorising train timetables. I’m writing about some of my special interests here, in the hope that others might learn something, or find something to relate to. Mine have varied widely throughout my life, and most of them don’t have any connection to each other – so I’ve chosen a selection!

Horses

This is probably the oldest interest. I collected books about horses and learnt everything I could about them. I wasn’t interested in the idea of riding them, or even having much to do with them in reality. I loved the amazing way their legs moved and the sound of their hooves on the road. I spent so much time drawing and re-drawing horses, perfecting individual features like the shape of their faces and the feathering on their hooves. Nowadays pretty much any animal I try to draw will be based on the horse ‘template’ because it’s so fixed in my head. I still get incredibly excited when I see horses walking down the road, and I’m still fascinated by the way their legs work and the way they look.

Stationery

I’d say this is the longest-running interest. For my entire life I’ve been fascinated by stationery. The most exciting part of school was buying and organising all the stationery I was going to use. I spent hours planning my filing systems and organisational arrangements, deciding exactly which folder to use for what and preparing refill pads and dividers. Even way back before I actually needed to use my own stationery for school, I would collect and catalogue it. I’d plan out elaborate systems and projects just so that I could buy and arrange stationery. This interest is just as active as it’s always been. I still get a thrill from planning a new system, and buying stationery is one of my main sources of ‘retail therapy’.

Chernobyl meltdown

This one is a lot more recent. It started very suddenly when I came across an article about Chernobyl. I got ‘sucked in’ and immediately started devouring everything I could find on the internet. My trek through the Wikipedia article led me on to related information about nuclear reactors, other meltdowns, the dangers of nuclear radiation. It was an intense few days and then dropped off fairly quickly. But I’m still fascinated by it and could easily find myself ‘sucked in’ again. If anyone were to bring it up in conversation it would probably be difficult for me not to infodump everything I’ve ever learnt about it.

Baking

Another recent one, this started a few years ago. I became obsessed with figuring out the fundamental ratios that defined recipes, and working out exactly how the chemical processes in baking worked. I spent a lot of time doing research online and from books, and a relatively small proportion of time doing actual ‘experiments’ with baking. This became dormant when I sort of ran out of basic foods to learn about. Once I’d figured out the definitions of ‘muffin’, ‘cake’, and ‘bread’, I wasn’t particularly interested in customising or perfecting them.

Gerbils

This is the most recent, starting just over a year ago – when I got my pet gerbils! I spend a lot of time arranging and rearranging their cage, planning and making toys, playing with them, training them, thinking about what to feed them, and just watching them. I find all animal behaviour fascinating, and gerbils especially. I like seeing them interact with each other, dig burrows, and chew cardboard – it’s fascinating to wonder what is going on in their minds. Not to mention they are absolutely adorable!

Autism!

This is probably the most obvious one, because… I’m writing it on a dedicated autism blog! It started around two years ago. At first, I just thought that I had an inexplicable fascination with it. Eventually I realised there was a reason for that: when I realised I was autistic. After that the interest just got stronger and stronger, and even moreso after my diagnosis. It might one day become dormant like many of the others, but I can’t quite imagine it.

 

Defining stimming

I’ve written about my own stims before. Even when I wrote that post, I was a bit doubtful about the idea of a defined concept of ‘stimming’. And since then, I’ve become even more unsure.

Everyone defines stimming differently, and gives it a different purpose. I think the reason it has such a vague non-definition is that it’s a word coined by neurotypical people to describe whenever an autistic person did something they thought was ‘weird’. From the outside, it’s impossible to know what someone’s thinking or why they are doing something. So that means that a whole lot of different things end up being lumped together under the word ‘stimming’, making it not very useful.

Here are some of the reasons I do things which would be classed as ‘stimming’:

  • I actively enjoy it – e.g. pressing something that makes a clicky sound.
  • I don’t know why I do it, it just happens without me noticing – e.g. I rock automatically when I’m sitting down in certain positions, and it requires active concentration to not do it.
  • A kind of in-between of the previous two: I feel uncomfortable if I’m not doing it – e.g. folding up my legs when I’m sitting in a chair.
  • To release nervous energy – e.g. I pick my fingers and click my jaw much more frantically if I’m anxious or excited because I have twitchy energy that has to go somewhere.
  • To block out or process bad sensations – e.g. when I’m somewhere loud I often tap my hand rhythmically to give me something to focus on.
  • To express myself – e.g. when I’m excited, freaked out, confused, (or… pretty much anything now I think about it), I sometimes do a single very quick hand-flap.
  • To handle bad emotions – e.g. when I’m very anxious or upset I sometimes punch my leg because it feels grounding.

And I’m pretty sure there are others too.

Looking back at that list, I think it can be divided into categories (nothing like a bit of categorisation to help me understand something!):

  • For the sake of the sensation. This includes things which are enjoyable, things which are automatic, and things which make me feel more comfortable.
    I’d say that this category is entirely the result of a weirdly wired autistic sensory system. Everyone has sensations they find enjoyable, some of mine are just a bit more unusual. Most people find themselves moving automatically every now and then, it just happens more often and in different ways for me. And a lot of people feel more comfortable in certain sensory situations, they just maybe have a wider range of what’s good for them.
  • To deal with bad stuff. This includes processing my own emotions, bad sensations, or anything else which causes me stress.
    I think this category is the intersection of an autistic sensory system and an autistic brain. The autistic brain part is what causes us to get more stressed or bothered by things which NTs can handle (like an unpleasant sensation or a negative emotion). The sensory system part is what allows us to be comforted or calmed by specific sensations or actions.
  • Body language. A lot of my body language is similar to NT people’s, but a lot of it isn’t.
    I would put this category firmly in the autistic brain section. Whatever it is that’s different in my brain, it give me different instinctive ways of expressing myself.

I’d be interested to know whether these categories resonate with other autistic people.

Sensory sensitivities

Sometimes having sensory sensitivities makes me more able to deal with unpleasant things than most people. I’ve had to learn to handle bad sensations my whole life, so it means I’m better at ignoring things that other people find intolerable.

Most of my sensitivities are to do with either smell or eating. I get easily stressed out by loud and bright things, but there aren’t any specific visual or auditory sensations that bother me in the way some smells and foods do.

One of the worst smells for me is a specific “car smell”. A lot of people would probably say that cars don’t have a smell, or at least they don’t all smell the same. But, they do! It does vary from car to car, but they all have a very particular combination of a few things: a hint of petrol/diesel vapour, the musty and usually damp air, and the plasticky materials of the interior.

That smell feels like a physical threat to me. It makes me feel ill, it gives me a headache, and I get stressed and anxious. I’m more used to the smell of my family’s own car, which is one of the reasons I don’t like going in other people’s. When I was little I tried to explain that the smell of my aunt and uncle’s car was the reason I didn’t want to drive with them. But no-one really understood, because most people don’t notice or care about the “car smell”.

So, all my life I’ve had to learn to tolerate something which feels intolerable. Depending on the situation I just try to avoid the smell by breathing with my mouth, or I reduce it with open windows and air conditioning, or I just get used to it – some days it seems less strong than others.

It’s pretty clear that I have a reduced neurological tolerance for some sensations. My brain and senses get frazzled by certain things much more easily than most people. But as a result of that, I’ve developed an increased conscious tolerance. I’ve had to teach myself to push on even when my brain is telling me to freak out about a sensation.

Which means that when a sensation arises which is equally unpleasant for me and other people, I often handle it better. If there is a mysterious drain smell coming from the sink, everyone in the household freaks out more than I do. Because, what’s new? There’s a bad smell – it’s not a rare occurrence for me. So I assume that I’m being oversensitive as usual, and that I should put up with my discomfort because other people won’t care. Then when other people do care, it’s quite unexpected.  I find myself wanting to reassure them that they can handle the bad smell, because I feel so much more experienced with that than they are! Which is pretty strange when I’m the youngest person in the family.