a few words about stimming – part one

7th Jul 2021 ~ stivvanos ~ Leave a comment

_{[image description: colour-enhanced pre-dawn sky tones overlaid with texture from a broccoli head close-up. Text: a few words about STIMMING in white and purple]}

What are stims? Actually no, let me ask this: What are stims for?

Not a question that gets asked very often.

Seriously though, what are they actually for, because when we look at the kinds of things people talk about, a lot of it focuses on Regulation and Communication. How can one kind of activity do both those thing, because if you give it a moment’s thought, they are not exactly similar. To start with, communication is all about interacting with the environment, and in particular the other humans in that environment – it is all about reaching out, sending signals. But regulation is the opposite, being focused in on internal states and maybe also on sensory experiences – the environment entering your thoughts, not your thoughts entering the environment.

So, what’s going on? As is often the case when we are faced with a problem like this, it might be that we’re looking at things on the wrong level, and there isn’t really a problem at all. Or perhaps what we call stims just look similar but are two or more totally different things. It may be that both those possibilities are true.

First, I’m going to look closer at those two ideas: Stims are Communication, and Stims are Regulation.

Regulation involves rebalancing internal states that have been overloaded or understimulated, generating some kind of emotions that are uncomfortable or unpleasant, if not outright distressing. When we get upset or distressed, it is not just a feeling arising from emotions of discomfort, anxiety, sorrow and so on somewhere up in our brains. It is a change in what’s going on in our brains certainly, but our brains are connected to the rest of our body by vast networks of nerves, and what we’re thinking or feeling ripples across our bodies just as signals from around our bodies travel to our brain.

So, yes, when we ‘feel’ a certain emotion, we also ‘feel’ different physically. Obvious examples are how our bodies react to extreme fear – dilation of pupils, muscle tension, raised heart rate, change in breathing and so on. The idea that emotion is separate from cognition just does not make sense, and the idea of the mind separate from the body makes even less sense.

Great, but what about stims then? Well, we do know things like pacing, jigging your leg, doodling, clenching your hands and so on are common ways of responding to stress for example, and we understand those very activities as types of stim. Which means everyone stims. Yep. In this sense, stims act as a way to transfer ‘emotional energy’ into something physical, sort of like a pressure release valve if you like. By doing that, they… you guessed it, they regulate our emotional (and by extension, mental) state.

This is why we say ‘everybody stims’ and call out the artificial distinction between ‘normal’ human activities and this allegedly functionless and aberrant Autistic activity called stimming. Stimming is very, very functional. It is something everyone does, and patterns of stimming are found to be very consistent all across the globe, which tells us it is a basic human strategy that is pretty optimal in its functionality… and its function in that sense is to maintain homeostasis – balance – in our state of being. We know stims often do this by transferring ‘pressure’ or ‘energy’ from our emotional state into physical actions, and by so doing help restore balance and a sense of control.

If you like, that release of ‘negative’ energy is the most basic form of stim, Foundation Level Stimming. But humans act out their emotional state when they are elated or excited or just happy too. Just watch a crowd at a football match when their team scores. Nothing more need be said – jumping, hugging, cheering, clapping, waving hands, dancing… and yes, that list looks a lot like a list of ‘aberrant and dysfunctional’ Autistic stims.

And you now know why. Autistics are humans, and Autistic stims are just human stims, and human stims are very consistent across cultures.

The big difference is Autistics tend to stim more, more often, and with more fluency. Given we know emotional states are the key driver behind stims, that suggests Autistic people are driven more by emotions or feel emotions more. So, why would that be?

Emotions are essentially a translation of how experiences ‘feel’ into (not always accurately) labelled categories. Any review of categorisations of emotions will reveal quickly that experts still struggle to define the fuzzy edges of emotions, and these can vary from culture to culture. In this sense emotions are not unlike colours – the ‘edges’ between one and the next are fuzzy, somewhat arbitrary, and also somewhat culturally defined… and we can, with practice, manage and regulate them and how we respond to them.

What we can say is that they emanate from broad feelings along the lines of ‘this is a bit bad’, ‘this is very bad’, ‘this is a bit good’, ‘this is the best’, ‘this is the worst’ and clearly even those can be generalised as degrees of ‘feels yum’ and ‘feels yuck.’

What regulation seeks to do is release excess to bring those ‘yum’ and ‘yuck’ feelings within the boundaries of comfort. So, we have a sort of ‘comfortable zone’ and the edges are like thresholds past which emotions can start overpowering us.

Now definitely if you are enjoying overloading on happy feels you will want to enhance that and we could view that as a decision to temporarily shift the ‘happy threshold,’ but that can be just as distracting as anything else if you are trying to focus on something complex that requires a calm state of mind.

Where stims work best really is in restoring balance and calm. That’s why they tend to get associated with negative states, as ways to manage that state and prevent overload. Actually, if you look closer at that football crowd, they are not really stimming to release their joy as releasing tension, stress, anxiety that had built up during the match. The goal provides a trigger event allowing them transfer that excited tension into physical release.

And here’s a little curiosity. If you release ‘negative energy’ by stimming, and keep going… can you cross the ‘comfort zone’ and even pass the ‘positive energy’ threshold?

Pause a minute and consider that.

So, I just told you the big secret about stimming. This is how ‘happy stims’ work, and Autistics have become masters of this art. You can generate emotional states by using stims that are designed to pull you back from negative overload, and use them to push into strongly positive states of being.

Is that a revelation? If you are Autistic, it may not be.

Actually, I’ve already noted that as Autistics are human and humans stim, we should expect similar tricks to appear in how all humans act. And we do. Anyone who has got caught up in dancing, or jumping and clapping at a concert, or jumping and clapping at that football match too… you are using ‘anti-negativity’ tools to push through emotionally to overload on happy emotions.

I’m going to leave that just sit there for now. Time to mention communication.

This bit is actually easier to discuss especially if you are familiar with the idea ‘behaviour is communication.’ By behaviour we mean basically any activity people (or other animals) do. It is communication because we do stuff because we are motivated by a desire to meet a certain goal. That might be to find a more comfortable sitting position, or make it to the bus stop, or focus on a difficult textbook, to feel warmer or to address hunger.

So what’s that motivation feel like? The word ‘feel’ here is a massive clue because we’ve been using it from the start. What motivates us is a state of being that feels positive or, more often, negative. We can translate that feeling into an ‘emotion’ by reviewing how our bodies are experiencing it, and how automatic processes are shaping our actions.

Exhibit 1: the word ‘hangry’ which is designed to capture the irritability we feel when hungry. Anger + Hunger. Irritability and anger are emotional states. We know when someone is angry or irritated by how they act. In other words, they communicate their emotion through their behaviour… and that is how behaviour is a form of communication. Humans use this regularly – this is what we’re talking about when we discuss body language and micro gestures that add nuance to what a person might be saying. We also know we can sometimes just look at a person and know what their emotional state likely is, by how they stand, how they move, the way they move their face muscles.

So, if stims are basically a kind of ‘behaviour’ that is motivated by emotions, they are essentially like body language, and act as communication channels just like facial expression or posture or hand gestures can.

We still need to think about why Autistic people would be more driven by emotions, because there’s a reason for that. It is a separate discussion entirely though and I’m not going to try keep you here for another 3000 words. Relax!

What I will say in finishing is that managing emotional states is a normal everyday activity for all humans and fundamental to wellbeing. Humans as a whole have a lot to gain from sitting at the feet of the experts. I’d also mention that when we think about how we can focus on a task, get engrossed in it, maintain concentration over extended periods, even enter a ‘flow state’… at the heart of that is an ongoing process of subtle regulation of emotional balance.

That’s something to discuss in the second blog in this mini-series. Keep your eyes peeled, it’ll pop up in a couple of days.

For now, be good, enjoy your feels, and remember: respect the stimmer, respect the stim!

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This blog was brought to you with the (emotional regulation) support of:

Myrkur: ‘Mareridt’ [2017]

Myrkur: ‘Folkesange Folk’ [2020]

Aphrodite’s Child: ‘666’ [1971]

Emotions and control

21st Jul 2020 ~ stivvanos ~ Leave a comment

What is an emotion?

No, I don’t mean ‘can you name off some emotions,’ I mean ‘can you describe or explain what an emotion is, can you say what this ‘emotion’ stuff is, can you describe how they work?’

It’s not easy, to be fair.

Let’s step back a bit. What causes an emotion to happen? We can answer that using a range of different kinds of language, talking about triggers or precursors, inputs, activators or whatever, but to put it simply… a cause (a thought, sensory input, memory, whatever) has an effect, and that effect is big enough that it takes a form we recognise as emotion. So general it’s bordering on meaningless, perhaps.

What kind of things prompt these ‘emotion’ responses? Pretty much anything can, in the right circumstances. When we think about how we react to most experiences, when we describe the reaction we very often use emotional terms, or terms that imply an underlying emotion. Note – when we react. It is not just any experience, just the ones we feel warrant a response. What drives the decision to respond is this flip-switch thing called emotion.

We’re not generally taught to think about ourselves this way. It is instilled in us very much that we are rational beings and that our responses really ought to be ‘mature’ or ‘considered’ and that an emotional response is in some way irrational or immature.

Let’s take an example. It is a warm day and you’ve been busy and are a bit overheated and dehydrated, so you go grab a cool drink. Focus on that drink. What is your response as you chug it down? How would you describe your state afterwards? I had to rewrite that because initially I went with ‘how do you feel…’ in both questions and recognised I was already pushing ‘emotion’ terms. That in itself tells us something. But get back to that cool drink…

The words that people typically offer at this point are things like Uncomfortable, Irritated, Want, Anticipation, and later Relief, Satisfaction, Relaxed, Pleased and so on. It is not that hard to see that we’re dealing with specifically emotional terms. Humans do not generally approach a scenario like this with thoughts about osmotic pressure, respiration, capillary dilation, sodium levels, core body temperature and so on.

However it may be, though, whether you enjoy using sciency ideas or just are gagging for something cold, behind that are the same experiences, and the reason you even notice those experiences are what matters here. So, why do you notice? What form does that noticing take? We are right there in the space where sensory input transitions to conscious awareness, and the crucial question is, How does that sensory input trigger that conscious awareness? Why now? Why not 15 minutes ago?

What’s happened is that something has ‘tripped a switch,’ something has crossed a threshold, like rising waters spilling over a bank or levee. That’s what creates the things we call emotions. I did a picture. It’s not pretty but it is functional.

The middle line we can look on as a sort of ideal calm state. The blue and red lines are threshold values. The jerky yellow line is our emotional state over the course of, say, a day. As time passes, certain experiences may be nicer or less nice, but we roll on because life’s all about rolling on through minor bumps and glides. Then something happens that is particularly nice or particularly unpleasant – your partner messages to suggest eating out at a restaurant you really like, or you get to your car to find someone has dinged your car door and left a scratch. Okay, now we have an experience that kicks you over a threshold and an otherwise average day becomes loads better, or turns sour for a bit. Your response is emotional. Surprise.

Okay, that’s not exactly a revelation. It is also reflected precisely in the way that synapses in neurons fire, and as those very signals are the basis for poking us into feeling emotions, the idea of crossing a threshold and triggering a signal is a fair reflection of what’s actually happening on a cellular level. Cool.

More than that, we can say that when a person is in a chronic state of elevated emotion (usually in a negative way like anxiety or frustration or fear), it is now no surprise to find that it takes a smaller ‘input signal’ to push that wavy yellow line over the threshold. On a scale where going down to a 2 or up to a 10 will cross a threshold for you, if you are typically around the 4.5-5.5 range, a couple of ‘two unit’ events are not going to bring you to the threshold. If you are typically in the 8-8.5 range, just one would be enough. And that applies both for positive and negative emotions.

However, we don’t experience ‘an emotion’ as if there’s just this homogenous soup of emotion stuff. Agreed. They have what you could call personalities (we give them helpful names like ‘anger’, ‘amusement’, ‘distress’, ‘hope’ etc.), and they can be categorised as positive or negative (anticipation versus distress for example), and through time – we have emotions that refer only to past events (like regret) or the future (hope). They have also been grouped into clusters with one being a more intense variant on the previous, placed in opposition to each other, classed as related in varying degrees, being simple emotions or compounds of two or three others… There is no one clear-cut system that is generally accepted to classify emotions, and pretty much every one that has been attempted struggles when cultural differences come into play such as gender or social roles, tradition and ethnicity, age, perceptions of things like race, criminality, age, and more. It is really, really messy.

But… for our purposes, none of this matters. Phew! What does matter is that emotion is kicked off at a threshold point, and that things like past experiences, current state of mind, sensory stressors, and your sense that you have some degree of control over where things go next, are crucial in determining whether you feel a given emotion, how intensely you feel that emotion and your sense that you can control how it intensifies or dissipates.

There’s a hint in there about a key concept that lies at the heart of the whole experience of emotions – control. Emotion is, in essence, about the degree to which we feel we have control over what has happened, what is happening or what happens next.

This is why emotions are really important when we think about how Autistic people experience life and the how and why behind the way Autistics respond to those experiences.

Emotions play an important role in shaping how Autistic people experience and respond to their environment including their internal environment (such as bodily functions or thoughts) and their ‘human environment’ (the people they encounter and the nature of those encounters). At the heart of all that is a person’s sense of control over the course of events, and nowhere is this more evident than in the business of interpersonal relations. In this sphere, Autistics are – paradoxically – typified as unemotional, cold or unfeeling… but also prone to acting out, over-reaction, meltdowns, ‘tantrums’ and so on. Hmm.

The thing is, those observations are not wholly off the mark, but they are also not actually a paradox. Explaining how this is the case reveals the central role that a sense of control over one’s destiny – or autonomy – plays, and not just for Autistics but for all humans. This is because Autistic people are so utterly, totally, typically human, and what affects any person’s sense of autonomy and thus their emotional state is exactly the same as affects Autistics. What differs is not the person as such, but the experience they have.

And there goes a whole pile of pathologised ideas about how ‘disordered’ Autistics are! Whoosh!

So, let’s take an example, because this all sounds fine in theory but if it doesn’t translate to real scenarios it might as well be a fairy tale.

Going to lunch in a busy café with friends might be a really positive emotional experience, lots of buzz and bustle and joking and catching up, nice food, nice smells, all that stuff.

Now try doing that when you’ve been for tests for a potentially life-changing medical condition, you’ve not told anyone, and you really don’t know what the tests will show. It is not the same experience. You are distracted, maybe irritable. It is hard to focus on conversation, laugh at jokes, or enjoy your food. You feel obliged to force yourself to interact, to chuckle at jokes, to remember to ask questions but it’s a façade because most of your brain is busy elsewhere. The noise is jarring rather than a happy clatter, conversation is a struggle rather than an easy flow.

What’s going on? The emotional experience is utterly different, and at the heart of it is just one (albeit significant) environmental difference, a difference that exists not in the café but in your head. Even so, it is as ‘real’ a part of your personal environment as that cup of coffee or the smell of warm muffin or your friend’s voice. Instead of a mix of emotions constantly popping their heads over the ‘positive’ emotional threshold, they’re digging tunnels under the ‘negative’ threshold, and because they relate to something you cannot currently control (your test results) and the possible implications of that (something life-changing), they’re not going to go away easily. Constantly pushing them back under cover is hard work and for every one you push back, another pops up. Worse, this is distracting, and more negative feelings arise because it is a struggle to keep track of what’s happening in the café, and to respond in a friendly, interested way. Are you even succeeding in pretending? They can probably tell ‘something’s up’ despite your efforts, and that’s something you don’t want to talk about right now.

This is all about a sense of control, and the emotions you feel are linked in both scenarios to how much you feel in control of your piece of this world.

Same scenario, but this time you are Autistic and you go to the café at a quiet time, with one or two friends. You snack and have some tea. You chat quietly and because the lights are dimmed, the blind is partly down, and there’s almost nobody else there, you can enjoy the food and the smells, engage comfortably in conversation. You can feel at ease saying ‘okay I need to split soon’ without feeling obliged to hang around longer than feels comfortable. Anything in your environment that could be unpleasant is at low levels and manageable. You can keep track of the chat. You feel this situation is under control.

Now, do it again, at lunchtime. You are stressed out by the environment itself – the constant coming and going of customers, the sudden hiss of the coffee machine or clatter of plates, the barrage of noisy voices that blurs into a cloud of booming sound. You want to chat but just following what’s being said is a struggle. You can’t remember what your food even tasted like (did I have that cheese toastie in the end? No, soup. Glance at the empty bowl realising that you don’t remember eating…) and when someone asks casually ‘so how was the soup?’ you smile mechanically and say ‘oh, fine.’ And now you’ve lost track of that interesting conversation about the roadworks on the bypass. Ugh. It’s stressful, frustrating, confusing, distressing even.

You could go into lockdown and shut off the emotions, carry out an A-B-C of nods, laughs and responses and hold off until you get home to let it out. A self-imposed form of control, over yourself at least, because everything else is outside any kind of control. Alternatively, you can respond to the sense of lost control and get agitated, edgy, irritable, possibly make a snarky comment or get all sullen, leave suddenly. It is all about how you respond emotionally, when you respond, and how you exercise control… if you can.

On a general level, both these scenarios are the same. It is just about a person in a café who feels they do or do not have control over their experience and responses, how that is played out in emotions, and how those emotions are intertwined with their sense of control.

Great. So what?

Here’s what – that busy café experience is in one or another form played out constantly as a normal daily experience for many Autistic people, on a bus or train, in a classroom or office, in a shop or pub, or just walking the dog.

Imagine that experience of waiting for test results, and imagine going through that twice or four times or ten times in a day, every day, right through your life. It’ll break you. It’ll break you pretty damn quick.

You could just shut down emotionally, barricade yourself in and endure until you get space to release it all privately, or you may not manage that and end up flipping out in an outburst of emotion – intolerance, anger, tears, tantrumming, snarling, glowering sullenness. You could be ‘unemotional’ or you could be ‘over-emotional,’ and the cause? One and the same. Too much unpredictable, uncontrollable stuff, too many demands on your attention and thoughts.

Of course, if you were to blurt out suddenly about your worries and fears around that medical test and the wait for results, what it could mean for you… cue all the empathy and compassion, kind words and support. It might be way outside the experience of the others with you, but they have an idea about all this kind of thing and how you’re supposed to respond. You maybe are not so lacking control after all.

This is not an option typically open for Autistic people dealing with sunlight slanting into their eyes, noxious smells, disorienting background movements and noise, and much more. These are things everyone else is also experiencing right now and they know how it feels. It doesn’t feel bad. What are you on about? Ugh.

You’re not even in control of your own story now. You are over-reacting, creating a fuss, spoiling things. Your own friends are now unintentionally gaslighting you just when what you needed was support and consideration. And there you go with a whole new set of emotional triggers.

So, how important are emotions? Huge. Essential. They are right there at the core of the decisions around how we respond to our experiences. They say “this is important! respond!”

The words emotion, motivation and motion derive from the one root meaning, and appreciating just how emotions are the motivators that drive our ‘motions’ (or actions, or responses, if you like) makes a big difference to understanding what goes on between ‘cause’ and ‘effect,’ or what gets called ‘stimulus’ and ‘behaviour.’

It is also a great way to assess just how much control we have over that bit of the world we lay claim to, our personal space in its many forms. If you include the word ‘desire’ it perhaps gets easier to spot – when you experience something and desire to act on it, that desire is in the form of an emotion (we want to vent our anger, weep our sorrow, pace out our frustration, or clap our delight). If you want to sustain the emotion, or want to cause it to dissipate, checking to see if your response was successful in achieving that is a quick, easy way to establish to what extent you do indeed have things under control.

Super-simple example: The TV is too loud. The emotional effect is unpleasant. You desire to exercise control over this. You grab the TV controls and lower the volume. Quick emotional check: the unpleasant effect ceases. Cool. You are in control. All is good. It is as simple as that:

Experience -> Emotion -> Desire -> Decision -> Action -> Outcome -> Check -> Success / Fail

We do this over and over hundreds of times a day. How close we are to a given threshold depends on our circumstances, on our past experiences, on our expectations, and it determines how often daily events have an emotional effect, and how much effort goes into addressing or expressing that. Understanding this and applying it to basically everything that Autistic people experience, to every observation of Autistic ‘behaviour,’ reveals that Autistic people are not really any different to anyone else, we are just constantly pushed way too close to those emotional thresholds way too often, and that ‘black box’ that behaviourists refuse to discuss in between input and ‘behaviour’ turns out to not be incomprehensible, and to actually be really very important.

Start from there, and the pillars of what allegedly characterises Autistic people start to fall, one after another, boom, boom, boom… just examples of humans being human after all, and what’s left is a vulnerable, sensitive, patient, determined, passionate, resourceful human being who just needs the world to cut them a bit of slack.

This show was brought to you with the emotional support of:

Siouxie and the Banshees – The Scream, 1978
Sweet Smoke – Just a Poke, 1970
Ludwig van Beethoven – Piano Concerto nr.3 in C minor, Op.37
Grateful Dead – ‘Dark Star’ from Live/Dead, 1969

About Being a Human in Isolation

25th Mar 202025th Mar 2020 ~ stivvanos ~ 4 Comments

There has been quite a lot written recently about four things – how people can deal with being in isolation, how Autistic people can deal with isolation, how kids can deal with isolation, and how Autistic kids can deal with isolation.

Split out explicitly like that it seems off, chopping it up into four parts. There are two ‘cuts’, separating ‘people’ from ‘kids’, and ‘people’ from ‘Autistics.’ Adult non-Autistic seems (surprise) to be the default.

This says that kids somehow respond to and experience isolation and disruption of their normal life differently to ‘people’, i.e. adults, and similarly Autistics experience this differently to ‘people’, i.e. non-Autistic adults, and thirdly that Autistic kids experience all this differently to all adults, and differently to other kids.

Certainly to some extent that’s true, but we could say the same based on people in their 20s versus people in their 50s, people with a physical disability versus abled people, people living lone versus those living in a household of several individuals, and so on.

What is striking about how these topics have tended to be written is not just that these divisions are taken as given, but also that what can be said about any one category can be generalised across all people dumped in one of those boxes. Not all kids are the same by any means, and the same can be said of Autistics of any age, or indeed about any people.

The consequence is that most of what’s been said thus far does not ring particularly true. From an Autistic perspective, for example, there’s been a lot of quips about isolation being basically ‘business as usual’ for us, or that we are uniquely placed to advise non-Autistics about how to cope with long-term isolation. The responses tell it all – a mix of ‘ooh yes!’ and ‘ugh nope!’ in equal measure. You can’t dump 250 million people in one box any more than you can dump 7.7 billion in one box.

However, what we can say is that all the people in all those boxes have one key thing in common. They are all human. That so-obvious-why-are-you-even observation is actually the key to getting discussion about all humans in isolation to ring true.

We are all human. That means, however we might go about interacting with others (or not), we have human bodies, exist within human societies, and have human experiences, thoughts, feelings, desires, needs and so on. Same for a five-year old kid as for an 85-year old. Certainly our knowledge, experiences, and how we express ourselves will vary person to person, but the mechanisms that drive all that are essentially the same.

We all understand that we are individuals, and we are all part of a distinct species called human. We understand, even if we can’t express it or fully understand it in an explicit way, that we live our lives within our own personal spaces, some of them shared with other people, that things in our environment impact how we feel and how we understand ourselves and our place in this world, and that when we act it has an impact on our environment, including on other people.

One element in all that is a sense of what we are entitled to – our personal dignity, and our autonomy. We establish and preserve these through our actions and words. To put that another way, we ‘fill our space’ by setting our boundaries and establishing our rights. To do that, we need to feel some sort of control over the course of our lives.

Here’s an example. If we are using a tool (or playing with a toy) and someone else reaches for it, we can say (through words or actions) “no, I’m using that.” We expect that this will be understood, that a boundary has been defined (albeit a temporary one) which places that object inside what we have defined as our personal space. We feel entitled to tell people to ‘get off my lawn’ as it were. If we’re not using that object, we may well not care less who takes and uses it, but right now, it is ‘ours.’

So what happens when our ability to access that tool or toy, or to retain ‘ownership’ rights, is removed? Past experience has defined our right to access it when we need it (subject to some other person taking temporary possession). Our sense of control – which is our sense that we ordinarily have a right to bring that thing into our personal space and set a boundary around it – has been taken from us. That can be irritating or frustrating. For some it can be deeply upsetting.

That is what isolation is.

It is the experience of finding that your access to things (both tangible objects and intangibles like freedom to meet others, to go to work or school, to sit out in the park in the sunshine) has been taken from you. This is experienced as a loss of control. When that is compounded by other uncontrollables like the risk of infection by a new potentially dangerous virus, uncertainty about when this isolation will end, lack of information about how you will be able to pay bills, when – or if – your exams will happen and so on, the experience can be very distressing. That applies to everyone. The nature of the experience is the same, regardless of how impactful it feels for an individual.

Now to specifics.

One common quip has been that Autistic people will handle isolation easily because (as the stereotype goes) we are averse to social activities, spend most of our time in a self-imposed isolation, and we actually like things to be like that. It is suggested that we can therefore roll through this with ease, and can offer others tips on how to handle the experience.

In truth, this is far from accurate.

In fact, whether it is accurate or not has very little significance, because it is what lies behind all that which actually shapes how we experience isolation. It is not isolation that is relevant here but the why, how, how much, when… Just as we can be irritated by someone reaching for a screwdriver or tablet or Lego we are using, and not care at all when we are not using it, so context is the real driver of how we experience isolation. All of us. Not just non-Autistics or kids or whatever. All humans.

Isolation or lockdown takes away our control. It takes a piece of the space we feel entitled to lay claim to, and takes it from us. That may be losing access to a daily visit to your parents, loss of your job and income, no right to do your daily 10km run or swim at the pool, or it can just be loss of the option to choose to walk to the park after lunch one day.

And here is where the assumptions about Autistic people calmly rolling through this experience starts to get turned on its head. If you have a single social outlet – say playing Dungeons and Dragons once a week with a handful of friends – losing that can be as impactful, or even more impactful, than being unable to go to work. What matters is how significant that is for how that individual lives, and how many options they have to secure control over an alternative.

If you cannot go to work and cannot meet up with friends, but can still drive to the mountains and go for a walk with your kids twice in the week or watch a movie with your partner or play video games with your brother, well it is a bit frustrating but there are still options. If you were relying on one event in the week for human contact, all the books and movies and social media in the world cannot fill that gap. What matters is how significant that lost experience is for that person at that time.

To dig into this a bit further, the more significant an experience is, the more emotional weight it carries. That DnD session may be what sustains you for the remainder of the week, bringing a flood of positive experiences to your parched inner self.

And what of Autistic people providing non-Autistics with cool tips on how to be a reclusive, isolated, asocial person? Well, putting aside the fact that most of us are not like that, or do not wish or choose to be like that, what works for one person won’t work for another, especially if they come to the same circumstances from different places. While one person may embrace isolation to dive into box sets or become engrossed in hobbies that they rarely have time for, if that makes up a significant part of your life anyway, its relevance and thus significance, and thus emotional weight, and thus potential to sustain you is considerably lessened. What works for a person who lives a largely isolated life simply is not going to work for someone coming to the experience fresh, and vice versa. Certainly you can grow into or out of ways of filling your days, but that takes time and often involves building up a new context and priorities. Even then, knowing this is a temporary or a permanent state of affairs remains in the background and colours the experience.

And this brings us back to the business of feeling in control. Knowing, for example, that you will be in isolation for 14 days, or six weeks, you have already got some control. You know you will be isolated, and for how long. You can quantify the experience, put an edge on it and decide what to fill that space with. Not knowing how long it will be for, not knowing day to day or week to week how the parameters of that isolation will change strips away a lot of that control.

The people who feel that most are those who either have a long history of feeling unable to access control, those who have limited options to re-establish a sense of control, and especially those who fit in both categories. Many Autistic people fit in both categories. Their experience of a shifting, ill-defined, open-ended uncertainty about the nature and extent of their current circumstances is for many a chronic, life-long thing. Dropping another major shifting, ill-defined, open-ended uncertainty called enforced isolation or lockdown greatly exacerbates that experience. Far from being ‘business as usual’ it can be – and as many accounts have shown, is – deeply distressing.

So, please do not turn to us asking for handy tips on being a sad loner. Not only are most of us not ‘sad loners,’ where it exists, we experience our isolation differently, and actually we are likely to be coping less well with all this than you are. Pick your own boredom-alleviating entertainment, please.

To pop over to the topic of kids (remember them?) and their experiences. To a great extent isolation impacts them similarly to adults. The details are different but they are nonetheless humans. Uncertainty has the same effect. Broken routines have the same effect. The sense of lost control has the same effect.

Most kids have been pursued into isolation by a barrage of efforts to get them to keep doing school stuff, in the belief that they absolutely need this both to remain on top of their education and so as to ensure they retain something familiar in their daily activities. Very, very few kids are going to be okay with this. Being at home doing schoolwork is not being at school doing schoolwork, because being at school is about vastly more than the elements of the curriculum.

We have as a society been suckered into the belief – now too rarely questioned – that the pursuit of schoolwork is utterly essential, something that deserves the central place in children’s lives, without which their forward charge to adult competence and college and career and ‘success’ cannot proceed. It is not. More, it is actually not that significantly impacted by losing a couple of weeks or even a month or more. Ground can be regained surprisingly quickly, and when every kid in the country is in the same boat, it is worth remembering that progress matters as much relative to a child’s peers as it does relative to some external chart of ‘development.’

Kids do need structure, but it gets forgotten why they need it. It is not because without it they will magically dissipate into a cloud of molecules and be lost forever. It is because structure provides a well-established framework in which a child can practice defining and shaping where and how they exercise control.

What creates that structure in a classroom of 30 kids is relevant to that context, and not at all relevant to doing studies at the kitchen table. Being at home for an extended period is entirely different, and opens up new opportunities for ways to learn, explore and discover that may be utterly different to those in the classroom or playground, but are nonetheless useful – even vital – and even if not directly replacing what is gained in a classroom, are very much complementary to that.

This is a novel notion to many people, giving children control in new and unfamiliar circumstances. But it works. Not only to provide an alternative but as a means to grow and develop, and kids often embrace this experience, even those who might be least expected to do so.

Here are some suggestions that are as relevant to a kid with an intellectual disability as to a kid with regularly ‘acts out,’ has an eating disorder, typically aces tests in school, is hyperactive or is reclusive… because in the end they are all just humans.

Start by establishing what the context is – we are in isolation, and it’ll last for a few weeks. It is a new experience and the old rules and structures are gone for now. Allow them time to settle into that and find their footing before trying to push too hard to replace structure. People need time to figure out the lay of the land a bit. Now, ask them to start experimenting with creating new structure. It will be awkward, faltering and involve several failed efforts, but that’s actually good. You have the time and space now for that experimentation. Let them decide some rules around how their days are structured. You will be surprised how mature and sensible their suggestions are. Encourage them to get those plans on paper, and set a point in time to come back and review their effectiveness. Engage in discussion about how they worked or didn’t, and what ways your kids can reframe (or bin) them to make the days work better. This is an adventure in ‘being grown up’ and your open-mindedness and their sense of exploration and ownership is what it is all about. Enjoy the experience. Laugh together when the plans fail spectacularly, mop up the mess, and try again. Not only will this build your child’s confidence and maturity, it will help strengthen your relationship by fostering trust and respect on both sides. Oh, and expect to be surprised. Many times.

To finish, I will outline some of the ways that this current crisis is impacting many Autistic people – and indeed many other marginalised, isolated or vulnerable communities.

Central to this experience is uncertainty, our constant companion, and central to that is the changing advice and rules. So many vulnerable people, and especially Autistic people, have found vague instructions about ‘limiting contact’, ‘going out only for essential activities’, only shops providing ‘essential services’ being open and so on to be deeply stressful. Everyone needs clarity and, though that is a rare commodity currently, that is no excuse for not being diligent about carefully defining the new parameters on our freedoms and options. The more uncertain your circumstances are, the more that certainty matters. When you have little control over the course of your life, every scrap matters, as many in society are just discovering for the first time; this is our daily experience, welcome to our wibbly-wobbly world!

One other worry that is commonplace is about access to services, healthcare and supports. While many are not reliant on any of these during their daily life, for those that are worries about a home help being unavailable, being able to get to the pharmacy or GP, dealing with services that are suddenly shifted from overstretched to almost gone, facing the prospect of dealing with an already stressful experience like attending a hospital becoming something entirely new, a carer being replaced on short notice, not knowing if a therapy or appointment still even is going to happen, and so on is potentially terrifying. That nobody can guarantee what will happen tomorrow or in a week’s time only makes that worse.

And then there’s that one weekly meetup for coffee at a hotel that is now closed, the DnD session that cannot occur, the library that is unavailable, the lift to get shopping that cannot now happen.

There is a vast difference between finding half your many certainties of life gone and finding your three precious certainties gone.

So, once again to those who want to half-jokingly lean on Autistics for suggestions, please back off and consider that we are probably enduring a lot more than you can imagine, and perhaps you could help us more than we could help you. For Autistics, please keep talking about your experiences, keep reaching out to your community, forgive yourself, treat yourself, indulge yourself a little more, and don’t forget to ask for support and help from your peers. We do get it and between us we can and will get through it. And for all parents of whatever neurology of kids of whatever neurology, this is a time for your young ones to explore new things on their own terms – the lost structures may be disorienting but they are also opportunities, and simply realising that is a great learning experience to savour.

Most of all, please let’s all remember that each one of us is just another human being – flawed, confused, disconcerted by events, worried about tomorrow – just as we all are. Let’s reach for a bit of patience and compassion for each other, put down the judgements for a while and reach out a bit more. This is a shitty, stressful time for everyone but everyone has something to give and something they need. Together – for all that we are forced apart – we have what it takes to come out of this stronger, better and wiser.

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Today’s ramble was brought to you accompanied by a soundtrack of… silence.

Two hours with no noise, no music, no voices. Seemed appropriate.

Feedback loops make you you

19th Feb 2020 ~ stivvanos ~ Leave a comment

Who are you? How do you know? How do you know other people are not you? Answering this tells us a lot about how we come to understand who and what we are, and it relies on understanding who and what other people are.

Everything we come to understand about this world comes from what our senses tell us, both our exteroceptive senses (the ones that tell us about the world outside our skin-bag body) and our interoceptive senses (the ones that keep tabs on what’s going on inside us). It is by combining all this, balancing and comparing the multiplicity of signals and drawing conclusions that you develop a mental picture of the world in which you exist, what you are, and how you relate to that world.

A significant part of this process involves what we come to understand of other people, and thus develop expectations about what we feel we should expect of ourselves.

This can go awry. A good example is your singing voice. To you, it may be spot on, lovely. To others it may seem comically off key. It is hard to tell really just how your voice sounds, even your speaking voice. It is common for people to declare (as a friend did to me only this morning) that people do not like how their voice sounds when they hear a recording of it. Learning how to adjust your singing voice to match what you want other’s to hear takes practice and a lot of feedback, preferably from a singing coach, not your pet labrador.

This kind of calibration is little talked about as a social process but it is fundamental to how we develop our sense of who we are and where we stand in society. Feedback from others tells us a lot about when we overstep a mark, intrude into personal space, say something offensive, but also when we have touched someone with our words, given hope, signalled a desire for friendship or love, reminded someone we care, or that we want to say something, or seek a response from them.

But what if your social signalling is read by others as off key? Your social tune is not tuneful? What if your social song doesn’t seem to others to be a song at all? The feedback you receive will not be as expected, and absent some sort of insight into why, you will likely be at a loss to understand what to adjust or when or how much.

From this scenario has arisen a plethora of ‘therapies’ to teach some people how to ‘do social stuff.’ Some are dreadfully, even harmfully, mechanistic and simplistic. Others attempt more subtlety and try to teach ‘social skills.’ The problem with that approach is that social interaction is an extraordinarily complex thing that changes constantly in real time, making the business (and it is a very profitable business) of learning rules not really of much use. Those who sell such services will of course assure you otherwise. But then they would.

The story is far more interesting however, because the social parts are only the outer edge of what really matters, and that is your sense of your Self.

The signals you receive from other people when you try ‘being human’ tell you an awful lot about how good you are at it. We rely on this feedback, and change our responses based on it, creating loops of feedback. Those loops are the machinery that makes the Munster Model of Autistic Living work.

Now, let’s say you try A Social Thing with a few people and the feedback you get is not as expected – they pull faces and ignore you rather than include you in a chat, for example. What do you do next? is one obvious question to ask, but a more important ones are Am I wrong? Is there something wrong with me? Can I trust my own sense of my Self?

Can you trust your own sense of yourself.

Apparently not.

I say apparently because your signals were just in a different language, or to go back to the musical metaphor, you were playing Japanese gagaku and everyone else only understands country music. You seem to be making inappropriate, random and discordant noises. But you are not.

So who is ‘at fault’ here? Actually, the fairest answer is Nobody. This is not a problem within a person or persons but a difference of format. Certainly you can try to learn country music but your teachers will likely keep referencing things that make no sense to you – again a problem of language, not of people. Sort of like those ‘social skills’ therapists.

So how does this make you feel, given that you actually only know and understand gagaku and they only know and understand country? Given that each of your friends probably only knows of one person who makes those strange discordant sounds and hundreds of people who make great country music, and you only know one person – yourself – who gets cast out and misunderstood, you probably feel pretty down.

It is likely that you will come to doubt your musical capability, lose trust in your musical sense, believe, in short, that everyone else is probably right and you are just rubbish at this.

This is how the actions of others shape your reactions, and those reactions are your representation of how you understand yourself to be. If you feel ashamed – or ebullient – you will act ashamed or ebullient. Your senses, your actions, your emotions and your sense of Self are all intertwined and caught up in constant ongoing feedback loops.

So, who are you? Really.

It is only through coming to understand yourself, your actual capabilities, and gaining meaningful and appropriate feedback that a person can truly come to know themself. Our sense of our Self is tangled up in our sensations, imaginings, feelings and more but just as each of these is linked to and interacting with each other, so that sense of Self is tangled up in the spirals of interaction that flow from, around, into and through us from other humans.

Changing other people is no effective solution because it is a task of unimaginable proportions, and changing yourself has proven to be only partly effective and often actually quite damaging. Both have to fail, ultimately, because they are addressing the wrong things.

It is understanding modes of communication that really matters. When others learn that there are other types of communication – or music – and is taught about them, how they work and how to respond meaningfully to them, there ceases to be any need to change anyone. This is, in a sense, like developing bilingual skills. Dressing in a kimono won’t teach you Japanese nor how to interpret gagaku.

Once you open the door of communication, you reveal a whole world. Not just gagaku and a kimono but centuries of history and culture and a wealth of creativity and ideas.

So, can we stop trying to change people and instead honour their dignity, and seek ways to communicate rather than to exclude them or mutate them into something they can never be? You can come to understand and appreciate gagaku. I can come to understand and appreciate country music. Maybe not perfectly, but well enough.

Right now we don’t have enough. Right now, enough would be more than enough.

Personal Space 1

15th Feb 202015th Feb 2020 ~ stivvanos ~ Leave a comment

Personal space.

We think of this mainly in terms of when it gets breached, someone stepping too close or maybe unwanted touching. But our personal space(s) are many and complex. One of the most important is that space we reserve just for ourselves. A sanctuary that can take a multitude of forms from five minutes alone in the bathroom to an evening at home with an open fire and warm socks, pretending to be in a Lindt chocolate advert.

This is what we call ‘Me Time’ and it is personal space, or if we are to be really precise about it personal space-time. It is both a place and time in that place.

It is more than that, though, because our personal spaces are part of our self.

The space we occupy and how we use it should be ours to determine, but of course the world has other ideas about that from social media intrusion to last-minute work deadlines to a sick kid taking days off school. Each time this world takes a piece of our time and our space, it intrudes. Often we are okay with this because we would not think to resent a child for needing care, we actually welcome hugs from loved ones, are prepared to lose an evening to hit a deadline on a project we’ve been passionate about (especially if there’s overtime pay).

But there are points in the day or week where actually we just need to kick off the work shoes and close the door behind us. This applies to everyone, but for those who handle extra pressures or stresses, such moments are harder won and more precious for it.

And this is where we put in the ‘Autistic angle’ as a twist in the tail. Here it comes…

Autistic people are just like any people. We deal with daily intrusions and hassles, and have a need for me time just like everyone else. That need is all the greater, though, because of the ongoing stresses of being questioned, denied, excluded and intruded upon that are a peculiar feature of how non-Autistic people often treat us.

Me Time is essential. It is where the person you are, perforce clenched into defensive stance in response to an unforgiving world, can unfurl.

We each are entitled to mark out a space in life, in this world, and call it our own. So when you can, unfurl. Open your arms and touch the edges of the space you own. Stretch out and claim your space and make note of it’s extent. This is your entitlement, not something you secretly borrow from the world.

Remember that space, and as you feel others push in and intrude and lay claim, keep in mind that it is in you and you alone that ownership lies. You are entitled to push back. If you need to, you can say No. If required, you can say Enough!

DARE

31st Oct 2019 ~ stivvanos ~ Leave a comment

The Munster Model of Autistic Living is designed to both describe and explain the fullness of Autistic lived experience. It does more, though, than describe and explain. It provides the basis for inquiry through research, and it offers doorways to a better, fuller, dignified life for every Autistic person and, by extension, enables those who interact with Autistic people opportunities to understand, appreciate and engage with Autistic spaces and the people who occupy them. The master key to those doors is DARE.

What, then, is DARE?

On the simplest level, it is just that four-letter word: dare. It captures in a single syllable the essence of the motto: “Defy Everything, Endure Anything”. It suggests determination, positivity, self-assurance, owning your space, a certain radicalism, an assured poise and demeanour. It is also a call to action, a challenge to persevere, to step forward for truth and honour.

But DARE is not simply a word. Its origins as used within the Munster Model lie in a fortuitous accident when four other words came together in a discussion a few years ago: Dignity, Autonomy, Respect, and Empowerment.

Of these, the first three are called the Triad of Empowerment, a reference to the outdated and much-despised ‘triad of impairments’ that for many years was synonymous with the so-called ‘autism syndrome disorder.’ Together, they are the seeds without which the empowerment of any human remains impossible. They are the essence of Full Living.

To rephrase the earlier question–What is DARE?–at a more granular level, we should then ask: What are dignity, autonomy, respect and empowerment?

Dignity lies within the person. It is a state of being in which the person’s humanity–and all that entails–remains intact, regardless of circumstances. Dignity relies partially on the other two elements of the Triad of Empowerment–Autonomy and Respect–but includes a sense of the self, of a person’s right to be, to be to the fullest, to occupy your own space in the mind even if not always permitted to so do in the flesh. To put that another way, Dignity is about feeling entitled to live fully, entitled to equality and to privacy, it is about asserting those rights as an equal, and acting in a manner that displays appropriate entitlement to these basic rights. It is, we might say, about daring to endure any offence and defy any wrong. It presumes a right to respect from others, as an equal, and it presumes a right to act autonomously. It is the foundation stone of everything.

Autonomy refers to “living by your own rules.” In practical terms we can consider it as referring to making your own decisions on issues that matter to you and relate to your life, based on your own personal priorities and objectives, and carrying out actions based on those decisions. It refers to a fundamental right: the right to act freely and under the direction of your conscience. The foundation of autonomy is Dignity: it is impossible without Dignity, and it transforms Dignity into deeds. Autonomy relies also on Respect, as without the respect of others, the ability to act freely is impaired.

Respect, then, is a recognition by others of a person’s right to Dignity and Autonomy. While the other two come from within, Respect comes from without. Both Dignity and Autonomy call for Respect, but they cannot guarantee it. Humans are fundamentally a social species and as such much of a person’s Dignity has a social context, and most Autonomy is exercised in those same social contexts. It is in that social context, the interaction with other humans, that Respect plays a role. Respect is an acknowledgement of equality and entitlement, it concedes a person’s right to their own space, to their voice, to their freedom to act–it is the acknowledgement that a person has Dignity and Autonomy and that no other person is entitled to arbitrarily circumscribe them.

Dignity, Autonomy, and Respect interact closely, each building on the others. Each relies on the endurance of the others, and in so doing enables them to endure.

Empowerment refers to removing the constraints on a person’s ability to meet their fullest potential. As we are discussing humans, we can describe Empowerment as the state of being free to Live Fully, to meet every potential in so far as that person desires.

That last phrase “in so far as that person desires” is significant, because no person reaches their fullest potential in every aspect of life. We make choices, based on desires and priorities, and we recognise our entitlement to leisure as a valid activity, and one for which we have potential, have desires, have priorities, and tastes. Without it, we cannot Live Fully.

The phrase “being free…to meet every potential” is equally significant, as it refers not just to a right to reach full potential, but the right to choose not to. Hidden behind that phrase is a powerful word: Enough. In a world driven by an ideology of achievement and status, one of the most powerful of acts is to declare a given state of being as Enough.

DARE, then, is the combination of Dignity, Autonomy, and Respect resulting in the Empowerment of the individual, not just to achieve, but to declare this or that as enough, to be driven on by desire for more or to rest contented, as it pleases them.

The state of being where a person has Dignity, Autonomy, and Respect, and is thus Empowered to live their life as they see is best, is what we call Living Fully. The boundaries of fullness in this sense are set by the individual, who is content to reach for those boundaries, mark out that space as their Personal Space, and live confident that they are entitled to define its bounds and permeability, and that that entitlement will be respected by others.

The question, of course, is now raised: How does a person establish and defend their Dignity, exercise their Autonomy of thought, emotion, and action, and command the Respect they are due. That is a topic for another post, but that it now arises is one demonstration of the potential of the Munster Model to prompt valuable, meaningful questions, provide direction towards answers and, as will be elaborated elsewhere, define practical solutions for everyday living.

To discover more, and learn how the Munster Model of Autistic Living can enrich your life as an Autistic person or facilitate your interaction with Autistic people in your life, workplace, or as users of services you provide, contact Infinite Diversity for advice, workshops, lectures and consultancy.

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This outpouring was delivered to the accompaniment of:

Art Blakey and the Jazz Messengers, Au Club Saint Germain, Vol.1, 1959

Art Blakey and the Jazz Messengers, Caravan, 1987

Emotions and the Well-calibrated Self

22nd Sep 201922nd Sep 2019 ~ stivvanos ~ Leave a comment

There have been many, many models of emotion that have attempted to define and explain what this indefinable and inexplicable thing might be. Most have been failures, unable to account for whole swathes of emotional experience. It can be hard to pin down exactly what has gone wrong in these efforts, but perhaps it can be stated like this: By attempting to explain emotions themselves or by attempting to locate emotions in physical structures of the brain or body, or provide a single overarching purpose for Emotion, each effort has failed by asking the wrong questions. The question perhaps should not be Where are emotions, What are emotions or What are emotions for, but How are emotions.

The oddness of that question – How are emotions – is perhaps the key to its ability to elude us as well as the key to understanding emotion itself.

To be fair, progress with analysis of brain structures, new models of how the brain works, and descriptions that use systems, networks, processes of development and emerging phenomena seem to capture not just more of what we understand by emotion but provide meaningful explanations of how and why. The ideas of homeostatic emotion and constructed emotion are examples of these kinds of approach. They head in the right direction it seems, but they do not go far enough.

To push this further, we need to forget about emotion altogether and, picking up the idea of homeostasis, generalise that idea far, far beyond the individual’s body, and indeed far beyond the actual into the possible – and even into the impossible. This is because emotion is at work in memories, in imaginings, in aspirations and in the workings of logic. It is, in short, a cloud that surrounds the person and all they know, their mind and all they contemplate.

The idea that we feel closest to immediate family, the wider family and friendship groups, then the community, and so on in spheres of decreasing connectedness is an easy one to understand. The more connection, shared experience and interdependence we have, the closer we feel to those people. The less connection we have, the harder it is to feel connected – this is not a difficult concept. For an inherently social species such as humans a sense of connection – of relatedness – is essential for our way of living. It is the web that holds society together. It also, by extension, progressively excludes those further and further from our life experience – fewer contacts and fewer shared experiences you have, the less meaningful that person’s wants and needs are for you, and vice versa.

Within this basic model, how do we understand the idea of ‘myself’?

Does the self end where skin meets air? Does it extend beyond that, into a ‘personal space, or into the family or community? Does it lie in the mind alone? What happens when a person’s sense of self does not fully align with what most would consider the basic unit of self, the physical body or the individual mind? What exactly is this thing called The Self, and how do we ‘see’ it?

The concept of personal space is useful here I think. Most people are well aware that they have a personal space, that someone can invade that personal space just by standing too close. Different ‘types’ of people are associated with different degrees of closeness however. A close family member can hug us and that is fine, while a stranger sitting beside us on a bus can feel invasive.

That concept of personal space is limited somewhat by the use of the word ‘space’ which prompts us to think in terms of physical proximity, and a bubble of ‘my space’ that surrounds the person’s body. Things get a little trickier when we feel our personal space has been intruded upon by loud noise from the next street for example. The source of the noise is way outside the range of any scope of what we typically understand as personal space. Yes, it travels and could be said to penetrate our space regardless of where it originated. But the example does point to the possibility that this space is not entirely a physical thing, or to put it another way, not solely about physical proximity.

Once we start considering personal space as something that does not necessarily need to be about physical space it frees us up to consider what that feeling of intrusion is like and how other experiences are similar. For that matter, though personal space tends to be discussed as something sacred which others intrude upon, it is also somewhere we allow people and experiences into. When someone you care about reaches for a hug, and you are happy to provide it, what does that feel like? Mostly we don’t really think about it. There are clear groupings in our head – people who absolutely are going to get a hug, people who maybe can get a hug in certain situations, people who we may somewhat stiffly hug briefly – your boyfriend’s aunt for example, and people we do not expect to hug ever. But it is clear there are Hug Rules and we have some sort of picture of who sits where in the ranks of huggability. What are the rules? Who sets those rules? Usually, you do. It is your space and you decide this person getting a hug is okay. Definitely not okay for a stranger in a shop or on the street, but perfectly okay for your daughter.

When we push that concept out a bit and think of it as the elements of the environment which are ‘of me’ in some way, we can view certain people as having more or less a part in what makes a person who they are, a role as an external component of their personal space. That helps account for why certain people have more or less ‘right of access’, but it also suggests that intrusions into their personal space are akin to intrusions into our own personal space, that they, being insiders if you like, carry a piece of our personal space with them.

Viewed in this way, the very glue that holds society, friendships, communities and family together, the sense of relatedness which is such a core human need, becomes an inherent part of the self, and allows us to be outraged that ‘one of us’ has been harmed even if we have never met that person.

The idea that autonomy and relatedness are basic human needs is well established, and the two are sometimes presented as conflicting forces. Here, we can view the reach and permeability of personal space as a way to describe relatedness. Autonomy, in the sense of both agency and volition, the freedom to act and to choose when, why, and how to act, then becomes an answer to the question: What are the rules?

Putting this together, we have a sense of self that extends beyond the physical body through the environment through the process of defining certain people and things to a greater or lesser degree as ‘of me.’ As this is at least felt to be by our own choice it is essentially autonomy at work, shaping our relatedness, and then through our relatedness accepting both constraints on and extensions to our agency. We to a certain degree choose to enact our autonomy through association. It is this extended self that allows us talk about ‘we’, ‘us’ and ‘our’ – “we really did not play well in the second half” – as a fan of Manchester City who does not live in the UK, has never actually attended any City matches and hasn’t played football since they were a kid. It allows us share a sense of belonging. Our sense of self and our sense of belonging are intertwined not so much as conflicting forces but as mutually supportive forces that wax and wane in their immediate effect from situation to situation.

By building a sense of self in this way we necessarily go way past understanding the self as defined by our physical bodies or even the people and objects we associate with and reveal The Self as what it is – a concept. Being a concept is what allows us extend and contract it, change its permeability and how we respond to its interaction with the environment. It also allows us truly separate it from anything physical and bring into its reach things like beliefs and interests.

When we consider the things we feel some attachment to, some control over, some responsibility to, it quickly becomes evident that our memories, aspirations, imaginings and thoughts are very much part of that. What makes our self what it is includes all this and more, a cloud of gradually thinning density that can reach around the globe, capturing cultural or sub-cultural, religious, national, political, ethnic and other allegiances. I is not just contained within a multitude of different forms of We, but many forms of We are contained within I.

We can push this further. When we exercise our autonomy to manage this personal space, it applies to all aspects of our being, whether they be physical or not, and that includes a sense of control over how our time is used, not just our choice of goals but how we set about reaching them, the things we set out to communicate and the means we select to do that communication, the ‘thinking space’ we defend to cogitate and imagine and plan. We can label these in everyday ways as ‘space to speak’, ‘thinking time’, ‘me time’ or more formally as Personal Communicative Space and so on, but however we label them, they are part of a broader personal space, or perhaps what we could call the Personal World – everything we associate with and over which we feel we have some right to exercise a degree of control, or to which we are content to give up a degree of control. In both instances we are exercising autonomy through freely made choices, but also those choices are specifically about defining how appropriate we feel our relatedness to those things or people is.

Achieving some sort of perfect state of contented balance across the whole extended self, across that Personal World can be thought of as an extension of homeostasis beyond the confines of the body and also into wholly non-physical aspects of the self. Even in the traditional sense of balancing internal bodily systems, such balance is about a constant process of adjustment and most certainly as the sense of self is extended outward and inward, the likelihood of balance becomes less and less likely, and the complexity of maintaining that balance becomes a more and more complex task. I would suggest that we have a name for that constant urge to reach towards balance, and that word is stress.

Understanding stress in this way allows for the widely accepted notion ‘a little stress is a good thing’ – like a bit of exercise being good for you, and also space to allow for excessive stress to wear us down much as relentless physical effort on the one hand wears us down, while a total lack of physical activity leads to wasted muscles and weakened bones on the other. The extreme states are damaging, but some activity maintains a healthy system that oscillates gently around a balanced ideal.

And it is this movement away from an ideal state that is what matters here, because the purpose of this piece is to address the question of what emotion is, and how it operates, and answer that odd question posed at the start – How is emotion?

The original sense behind the word ‘emotion’ is to cause something to move, to put in motion, to impel into action. The idea of a moving experience, of being moved, as ways of expressing the effect of emotion are commonplace. This role of emotion as a driver of action has exercised many thinkers over the centuries – it can hardly be disputed that emotions lead people to act, to cease acting, or to change the way they act. There is a clear connection between emotion and action.

Referring to the model of a multi-stranded extended-self oscillating around a collection of physical and conceptual homeostatic ideal states, we can picture emotion as consciousness of divergence from homeostasis. I described this recently as “shades of the state of being conscious of being.” Essentially, I would contend that we experience emotion as we experience electromagnetic fields – it is only when the field change or we move through the field that we can detect it at all, as a tension through time between an expectation (that is, what we last experienced) and what we are currently experiencing. Comparing each against the homeostatic ideal gives not just awareness that there is a divergence but the rate and extent of that divergence, and the ‘direction’ of the divergence. Allowing for a degree of flexibility, a sort of comfort zone, movement beyond that range indicates an instability, which may require action – the emotion in question is thus engaged by the imbalance. Emotions are, of course, both positive and negative and have a range of intensity – feeling irritation, anger or fury depends on the extent to which the extended-self is unbalanced, and we can actively seek out imbalances that we feel remain sufficiently inside the scope of our control – riding a rollercoaster, going out for drinks with friends, joining the crowd at a football match – specifically in order to feel the imbalance created by handing over control to an external force and the pleasurable emotions that ensue.

That’s all fine in itself, but it depends on a number of factors to be in place in order to function safely, that is, to detect excesses in good time, assess the risk, and choose an appropriate remedy or none.

If the baseline – the homeostatic ideal – is miscalibrated (albeit, it has to be said, against some non-existent theoretical ideal) we have a problem. Everything referencing that baseline will be misread. A minor difference can be understood as part of what results in individuals being inclined to caution or risk, being what we call introverted or extroverted, having a cheery or dour demeanour and so on. Personality, in short. Given that there is no independent universal reference, we, being a social species, tend to use each other as a reference, reading the way others respond and act as a guide, allowing us to learn both where to place our baseline and also the extent to which our culture deems a given response and intensity of response to be appropriate. What gets called behaviour thus arises as the product of interplay between our experience, social references we encounter and how well we have learned to calibrate our baselines and manage our responses.

Needless to say, nobody is born with all this carefully calibrated machinery in place. It is learned. We develop increasing levels of emotional skill as we develop through infancy and childhood and indeed can continue to do so throughout life. Thus, the extent to which a person’s baselines are calibrated against the cultural norms of the society into which they are born and grow are dependent on their ability, inclination and opportunity to reference that information, to process it through feedback loops and test how effective that calibration is, and the kind of inputs they have access to. A person deprived of ongoing caring support in early life or subjected to traumatic experiences will be at increased risk of calibrating their baselines differently – perhaps dramatically so – compared to others in their society. Equally, how emotions are recognised, labelled and their cultural appropriateness will be dependent on external references. We can see the consequences of impediments to this learning process of calibration of baselines and responses in various ways such as the more gradual emotional development commonly seen among individuals blind or deaf from birth. It should be noted that this does not necessarily mean such infants are emotionally incapable as such, simply that they follow a different developmental path. It is more the mismatch between the opportunities presented and their capabilities that impairs development – such slowed development is not typical of deaf children raised by deaf parents for example.

The above examples point to variances in the learning process resulting from the absence of certain sensory input channels. Similar effects may arise through intellectual disability or through heightened sensory inputs. Again, the end result is not an impairment as such but a difference. The process of development may vary, and the resulting calibration may vary. What is significant in all these examples is not that the net result is different from the person’s peers but that each individual will seek out and calibrate to a state that ‘feels right.’

This is of the utmost importance, because that state of ‘feeling right’ represents precisely the interplay of relatedness and autonomy that calibrates baselines. When that process is impaired or the person is coerced into acting in line with baselines that do not represent that personal state of feeling right, the result is a state of chronic imbalance analogous to the sense of dysphoria felt by transgender people.

Externally-imposed efforts to teach ‘correct’ actions will necessarily conflict with the internal sense of what feels right. Not only will this be a slow process and unlikely to result in particularly useful outcomes, it will do psychological harm to the individual in multiple ways, and ultimately their own wellbeing will require that they cast aside the resulting miscalibration and revert to their own ‘correct’ baselines, which have not changed because the inputs against which they are calibrated have not changed. All that has happened is that a mask of learned actions has been applied by others, creating that dysphoria-like state. More, at the point this person seeks to revert to what ‘feels right’ they have lost crucial developmental time – perhaps years or even decades long – and thus inevitably are greatly disadvantaged in their ability to function within relationships and society as a whole. The resulting experiences may well, and sadly all too often do, only compound experiences of exclusion and ostracisation, and consequent chronic anxiety. Essentially, this is a ‘damned of you do, damned if you don’t’ scenario – maintain a mask that does harm or strip off the mask and experience harm.

In terms of preventing such outcomes it is clear that artificial or inappropriate teaching does no good and likely will result in lasting harm. Particularly in infancy and early childhood, play is the basis of learning combined with interpersonal engagement with close family members. In so far as those processes can result in positive outcomes for the individual, they must be calibrated by the person themself such that they ‘feel right’ and thus the meaning of the phrase child-led or person-led comes into real focus. What is appropriate for the individual is not something any other person can define, absent remarkable psychic powers. Trust is therefore an essential component of early childhood support. Despite enormous pressure to the contrary, the child’s developmental and wellbeing interests are best served by trusting that child to know their own needs, to facilitate their desires and exploration as far as safety allows and to put aside standardised plans of developmental milestones. No person is average, and many people not only diverge from average in multiple ways, those very divergences are expressions of the developing individual’s personality and characteristics.

This argument was assembled with the able assistance of:

Natacha Atlas with Mazeeka Ensemble, Ana Hina, 2008
Natacha Atlas, Ayesheteni, 2001
Parov Stelar, Seven and Storm, 2005
Negura Bunget, Maiestrit, 2010
Negura Bunget, ‘N Crugu Bradului, 2010
Parov Stelar, The Demon Diaries, 2015

A Little Question

15th Sep 2019 ~ stivvanos ~ Leave a comment

Imagine you are a doctor. A deaf person comes to you because they are experiencing depression. They, it turns out, have several symptoms beyond depression. These are digestive discomfort, poor appetite, problems with constipation, difficulty getting to sleep and feeling listless, high blood pressure and sometimes they get overcome with anxiety or experience headaches.

This collection of symptoms are, you quickly realise, indicative of someone who is suffering from stress. There could be other causes and of course you organise for them to undergo a few tests to be sure. The tests don’t reveal anything to counter your initial suspicion.

What would your initial diagnosis be? What questions would you ask them at this point?

Seriously.

Do you decide that this person is deaf and that what we are seeing here are caused by them being a deaf person?

_____________________________________________________________________________

scripted to the accomaniment of:

Röyksopp, The Inevitable End, 2014

The Dull Gaze

15th Sep 2019 ~ stivvanos ~ Leave a comment

misty golden sunlight filters in soft beams through an opening in a bronze-toned woodland.

The idea of gaze – le regard – was introduced by Jean-Paul Sartre in the mid-1940s. Part of what this says is that being aware you are observed, you become aware of yourself as an object of observation, and contemplate how you appear. Where Sartre goes with this is not hugely significant here. What does matter is that 30 years later feminist film theorist Laura Mulvey developed one aspect of the idea of gaze – The Male Gaze – in her essay ‘Visual Pleasure and Narrative Cinema‘ which was published two years later in 1975. That idea of the Male Gaze has inevitably been discussed, challenged, elaborated and tweaked over the decades, but in the process it kept the idea of gaze alive, and tied intimately to feminist theory. It is from this base that discussions have developed among other communities around the straight gaze, able gaze and, more recently the cis gaze. That last was a topic at the centre of a thesis written a couple of years ago by one of my daughters, a process that led me to focus on the idea more closely and consider its implications from a specifically Autistic location.

There are several ways to approach this, and rather than get tangled up in past discussions of gaze (and performance and performativity which will both also probably get a look in here) I will keep this simple and focus on laying out some basic ideas. For the purposes of this discussion I will use the word ‘dull’ to signify those humans not bestowed with the suite of characteristics generally associated with Autistic people. This references a lack of sensory sensitivity and state of alertness in particular, and in that sense ‘dull’ should be read not as derogatory, but simply as a range on a scale. I will cover the validity of using the term ‘dull’ elsewhere.

The Dull Gaze, then, is the non-Autistic eye looking on autisticness from outside. It is informed by some mix of the psychiatric and media presentations of ‘autism’ with the individual’s personal experience of, and understanding of, what significant observable features constitute ‘autism’, but also includes a number of features which may be expected to be effectively invisible, for example an expected intellectual capacity, emotional state or volatility, motives, expectations and so on. Included in this is some sense of how Autistic people are presumed to view non-Autistic people. This points to a recursive aspect of gaze that tends to get ignored and which I will pick up on later. Repeatedly.

And what of the object? That concept of gaze includes the awareness of the person who is being observed that they are observed. Thus when considering what Dull Gaze is we also need to take account of the Autistic awareness of what that non-Autistic gaze is seeing, or understands itself to see.

One other element to take into consideration is judgement. It is a feature of all human gaze that some form of judgement follows. As an inherently hierarchical social species, a degree of ranking, and assessment of like-ness and other-ness, inevitably is contained in the act of gazing. And there is (inter)action that follows from this. Gaze does not exist in isolation but is one element in a complex of real-time interaction. The awareness that one is gazing on a presentation of ‘autism’ inevitably colours understanding, essentially activating that Dull Gaze, but also informing decisions that follow from that. It should be noted that one consequence is often that active seeing is brought to an end in many cases, and the Autistic person is replaced by a fictional object called ‘autism.’ Consider this as equivalent to a woman in a bar being replaced in the eye of a gazer with ‘sexy babe.’ In both cases the autonomous individual is treated as an object with a suite of characteristics assigned by the gazer that define that person’s functionality from the gazer’s perspective and overrides signals that suggest otherwise.

A straightforward example of this process which most aut Autistic people are very familiar with is the process of disclosure. The act of stating “I am autistic” generates a Dull Gaze, and the dull person thereafter acts in ways that are informed by that revelation. In most cases the Autistic person is conscious that this change will occur and reveals that information with some awareness of what kind of responses may arise. The process does not start with the point of disclosure. It develops first in the Autistic person’s mind, and includes a review of how they have performed as ‘Human’ and as ‘Autistic Human’ thus far before this individual, and how they have themselves viewed the responses that individual offered. They will be conscious also that they may or may not have performed the masking process effectively up to this point and that their understanding of how well that masking has been performed may not be accurate. Just considering this in itself plays a part in the way an Autistic person presents themselves in the run up to disclosure. Their masking may glitch either involuntarily or voluntarily, and they may or may not be fully conscious that this has occurred. The whole process is therefore one of multiple feedback loops. Following disclosure, the Autistic person is freed to Be Autistic, but even that has an inevitable self-consciousness about it. There is an awareness that from this point this other person will apply the Dull Gaze even while many others will not, creating a problem around how to present and how this may be read. This complex of internal and external feedbacks is similar to those gay, lesbian, bi* and trans* people will be familiar with.

There is clearly a distinct difference between how the Male Gaze and the Dull Gaze (or straight, cis or some other forms of gaze) operate. There is not simply a state of being that can be gazed on from outside, but a point at which the gaze is invoked. This makes drawing parallels with the idea of Male Gaze somewhat problematic. The environment is often not the same.

I will now introduce a notion which I will cover in detail elsewhere and which, for now, will need to be treated as a given. Autistic people are, in the main, raised within a context that informs them that their understanding of their environment is flawed. This does not at all need to be some deliberate process of informing the person but a reasoned conclusion the Autistic person arrives at based on the process of observation, analysis, response, observation of the consequences of that response, and analysis of those consequences. This is essentially the feedback loop (another feedback loop) by which we learn from our environment. This can be most quickly explained using an example.

Person 1 observes Person 2 approach Person 3 and greet them a particular way. Person 3 responds a particular way to the greeting. Person 1 then approaches Person 3 and greets them in a similar manner, but receives a different response. It is not unreasonable for Person 1 to now consider how the situations differ. Having observed similar interactions between multiple people over the course of time, Person 1 again attempts this greeting with several other individuals and receives yet again responses that approximate to their first experience rather than to the response they see others receive. On further consideration, it is not unreasonable to conclude that one is ‘doing something wrong.’

This experience is one that recurs over and over again across a multitude of situations when interacting with other humans in particular. Further, most Autistic people will come to notice that they interact with non-human animals and with inanimate objects in ways that differ from their peers. Indeed, it is not uncommon for others to take the trouble to tell them so, and to provide them with a definition of that interaction as ‘weird’ or ‘not normal’ or ‘freaky’.

In addition, if that Autistic person is aware that they are Autistic (this is not a given), they will also be subjected to other, more general observations on the nature of Autistic people, from the media or overheard conversations for example.

In a sense, we can say that Autistic people are subject to a form of gaslighting. It is not at all clear whether they are doing something which they cannot see is fundamentally ‘wrong’, or are doing the ‘right’ thing but in a context which they cannot see is fundamentally ‘wrong’, or are doing the right thing in the right context and are misreading the response. Or perhaps they aren’t Autistic?

Who am I really? What am I? How am I this person? Am I this person? What is this person?

The significance of this sense of uncertainty cannot be overstated. It pervades so many aspects of life for Autistic people as to effectively be a chronic state of uncertainty.

So, when an Autistic person is conscious that they are subject to the Dull Gaze, there are a multiplicity of factors that immediately come into play. More, with a lifetime of experience with chronic uncertainty, how one can or should respond to that gaze is not at all clear. What actually qualifies as ‘appropriate’?

Unravelling the background to this, understanding how to approach disclosure, the role of masking, building a sense of self without reliable reference points… there are multiple directions this can and should now go. Those are topics for another time however. First, it is worth looking at some examples of the Dull Gaze at work.

To bring this back to the world of film studies, the starting point has to be Rain Man. Immediately we realise there is a distinct difference between Dull Gaze and Male Gaze in that most people came across Rain Man with little or no expectation about what this ‘autistic savant’ character would be like. Surprisingly little has been written about the impact of this film from an Autistic perspective, perhaps because most Autistics would rather it just disappeared. Most of what has been written is as unhelpful as the movie itself.

What we can say is that this film is effectively Day Zero, being the start point for most peoples’ sense of what ‘autistic’ means. As such it is the anchor to which the Dull Gaze is fixed. Much has been made of the inaccuracy of the savant angle, though the suite of ‘what autistic is’ characteristics perhaps has more significance in other ways – the paradox of being presented both as unemotional yet prone to overly emotional reactions, being highly logical in an illogical way, both of which have endured far more strongly than makes any real sense. There are also the stims, drab clothing, passive, dour manner (particularly when contrasted against Cruise’s character), rigid routines and sameness, Raymond is institutionalised, was believed to be a danger to his brother, has no friends and lacks what we could call street sense. He is fundamentally dependent on others for his care and to communicate for him, despite being fully speaking. His savant skills also are worth review, featuring both mathematical ability and remarkable memory, and linked closely to a deep commitment to facts and completism.

On paper, some of these can be matched to characteristics of real Autistic individuals, though a lot are way off the mark. What is notable is just how much of this basic template has endured through many subsequent ‘autistic’ characters in movies, stage and TV. These have become the checklist used to define a character as Autistic, and have fed into expectations outside the entertainment world also. This is, essentially, the basis for the Dull Gaze, albeit with some updates to include techie genius and a predilection for sci-fi.

We can summarise these as social ineptitude and disinterest, having an unappealing physical appearance, being dangerous, skills directed to purposeless ends, dependency, lack of emotion, desire for sameness, being easily manipulated, and lacking judgement.

What is notable about this set is that represents almost everything we should regard as undesirable in a person, everything we strive to avoid in ourselves. It is, in short, a picture of non-humanness, or at the least a picture of what is least appealing in a human. It is notable however that Raymond is not non-speaking and is not described as having a low IQ or as ‘severe.’ These are characteristics we can, we are told, validy expect in any Autistic person. Though media portrayals since 1988 often appear on the surface to be ‘kinder’ or ‘better’, they nonetheless clearly reference this same checklist in a tediously mechanical way even when, we are told, the director or actor ‘consulted with Autistics.’

So, this is the basis of the Dull Gaze. Unlike the Male Gaze which transferred assumptions and intentions from off-screen into the cinematic world, here the transfer is reversed. Nowhere here, and rarely since, has due importance been given to common Autistic characteristics or needs such as visual, auditory or tactile sensitivity, anxiety that follows from definable causes, examples of experiencing deliberate exclusion and infantilisation, inertia, the deep pleasure of hyperfocus and patterns. In so far as they are referenced, they tend to be presented from the Dull Gaze, as inexplicable and purposeless.

It is this collection of stereotypes and invisible characteristics that Autistics understand they are contending with when they invoke the Dull Gaze. Do you begin presenting a narrative about yourself or trust this person to observe? Do you continue as before disclosure? Are you now free to ‘act Autistic’ and if so, are there limits of ‘acceptable Autisticness’ post-disclosure? In many ways, it is quite similar to coming out as Transgender. There are clearly expectations about what you ‘should’ do or want, ways you ‘should’ now act. This immediately becomes a burden, a responsibility to perform Autisticness.

When we transfer that gaze into other contexts, away from the one-on-one disclosure to a friend or colleague, the ability of the Autistic to manage the process, which is questionable at the best of times, disappears. The rules change dramatically.

The commonest example is perhaps the child enrolled in a ‘special school’ or ‘unit’ for education. The entire basis for their enrolment is ‘their autism’ and not only are all aware of this, the whole environment has been structured with that in mind. The Dull Gaze is not just already in situ, it has informed the environment, the curriculum and the training of staff. More, the child has likely very limited self-awareness as an Autistic person and, with the power balance being what it is, has little opportunity to manage the relationship and its consequences. The extent to which that child develops a sense of self based on that Dull Gaze is considerable. One major consequence is that their relationship with others outside that setting is, as a result, wholly informed by the Dull Gaze. Given that that gaze is based on an inaccurate and incomplete collection of characteristics framed as disorders, deficits and incapabilities, it is extremely difficult to push back against that, particularly without Autistic role models to reference.

The consequences too often are poor self-image, an apologetic, shamed approach to interaction with others, heightened anxiety, and subsequent mental health issues. Even with positive examples to work from, the process of interacting in the role of ‘Autistic Human’ relies primarily on defensive and negative approaches. The Dull Gaze needs to be identified, disempowered, countered, and only then replaced with an alternative which itself too often has to be presented as “not like that, like this”, thus starting from a negative. Frankly, it is an enormously taxing and risky undertaking.

These are considerable barriers for anyone to overcome with any confidence of success. Thus most Autistic people resort to a combination of self-exclusion to avoid problematic encounters, and masking so as to hopefully not have the issue of being Autistic arise at all, and that in itself creates a series of issues that are by turns compromising, debilitating and disempowering.

There are no easy solutions to this. Unlike some communities, Autistics have no long history to lean on, little by way of widely known reliable role models, and no solid, coherent model of the Autistic condition from an Autistic perspective to reference. Neither is there a numerous, active community to share experiences with that is easily accessible except as an adult and then mostly via the internet. Outside the highly constrained and limited educational ghetto of ‘the unit’ and perhaps a degree of interaction with peers as a side-effect of parent support groups, there is no sense at all of a broad-based, multi-generational community to which one belongs.

The role of the media here is considerable, not just as a source of stereotypes, but as a potential means to enable the presentation of an Autistic Gaze. We as a community have been failed and continue to be failed by deeply problematic presentations such as All In A Row, The A-Word, Atypical and so on, and worse, the praise heaped on their alleged authenticity by non-Autistic ‘experts’. Even though she is problematic in many, many ways, the character Julia on Sesame Street remains probably the most positive representation of an Autistic fictional character on TV or in the cinema. Sadly, the small step she represents has recently been subverted by association with deeply negative concepts and scaremongering thanks to Autism Speaks. Coupled with widespread assumptions about unpredictability and violence in news stories (notably repeated and inaccurate association with school shooting incidents in the USA), the basis of the Dull Gaze remains soundly negative and based on expectations of incapacity, danger, unreliability and antisocial behaviour. Little exists to counter that – even ‘feelgood’ stories tend to focus on the kindness of others, or on a person achieving ‘despite autism’ or by ‘overcoming autism.’

Remedying this is an enormous task. It requires access to create new media representations, resources to ensure those representations are widely propagated, more resources to counter and disempower existing and newly arising negative representations, a wholesale re-education of key professions on a massive scale across multiple areas of life including education, psychiatry and medicine. On top of that there is a legacy of deeply scarred Autistics who require support, guidance and therapy to address the harm already done. It is clear that this is likely to be a multi-generational project. Indeed, it already is, having been underway now for more than three decades. What is encouraging however is that today we have the beginnings of a sound theoretical base to work from and increasing numbers of children and young people who are being raised and nurtured in positive ways, often by parents who are themselves Autistic.

We do need allies however among the non-Autistic world who are willing to run their hand across their face, sweeping away any vestiges of that Dull Gaze, and see us through our eyes. To achieve that effectively we need a coherent and intelligible model of the world seen with an untarnished Autistic Gaze. Part of the purpose of this site is to attempt to present just that. The few feral Autistics in a position to frame and communicate that perspective have limited access to suitable channels of communication. With that in mind, perhaps the most effective act of allyship at present is to simply clear a space and quiet the crowd, and resist the temptation to make use of that space to narrate the story. That temptation has trapped more than one otherwise valuable ally in recent times. There is a humility as well as power required, and unfortunately that is a combination too rarely found in this world.

Today’s excursion was delivered with the support of:

Thievery Corporation, Culture of Fear, 2011
The Selecter, Too Much Pressure, 1980
The Selecter, Celebrate the Bullet, 1981
Susheela Raman, Salt Rain, 2001
Thelonius Monk, Off Minor, 1964
Siouxie and the Banshees, The Scream, 1978
Siouxie and the Banshees, Juju, 1981
Witch Mountain, South of Salem, 2011
Cannonball Adderley, Bohemia After Dark, 1955
Cannonball Adderley, Accent on Africa, 1968

The Right to Responsibility

13th Sep 201913th Sep 2019 ~ stivvanos ~ Leave a comment

It is a commonplace notion that each right a person has within a community comes with a responsibility to that community also. What happens when a person is denied the opportunity to fulfil that responsibility? Why would a person be denied that responsibility?

Understanding this odd notion is crucial to appreciating an important element in the process of Othering that excludes certain people, notably those designated as other in terms of their ‘mental’ humanness. This fuzzy informal category may be fuzzy and informal but it is nonetheless very real and includes those regarded as having mental illness, intellectual incapacity, and a third awkward grouping that does not fit into either of the other two categories – despite many efforts to wedge them in – and which currently comes under the broad heading of Neurodivergence.

Simply put, Neurodivergence means ‘thinking differently’ but it is a little more nuanced than that. Adding a bit more detail, the ‘neuro-‘ part refers to neurology. As such, it deals with not just thinking but neurological systems. Often this is taken to be a fancy way to mean ‘the brain’ but it encompasses the whole central nervous system (CNS) – including the brain and spinal cord – and also the autonomic nervous system (ANS) which manages the balancing of bodily processes to achieve homeostasis or, when required, will boost or suppress a function or process in response to environmental triggers. Examples are suppression of digestive processes in response to stress, or contraction of pupils in response to bright light. Neurology also includes a third system, the peripheral nervous system (PNS). This includes all our external senses such as vision and hearing.

All three work together. They operate differently and carry out different functions but changes to one of necessity result in changes to the others. We can see the interplay by taking a simple example. Leaving a well-shaded house on a bright summer day a sudden rise in light intensity detected by the PNS results in the ANS causing a contraction of pupils to reduce the amount of light received, and as this is clearly not a single short burst of light the CNS may also be engaged to make a decision about shielding the eyes, resulting in signals to tilt the head downwards a little and raise a hand to block direct sunlight for a short time while the eyes adjust.

Change how any one of these elements operates and how the others respond is affected. If the ANS is calibrated to give a wider resting pupil diameter or responds more slowly to sudden changes in light intensity a whole range of consequences arise. The person may learn that avoiding bright lights and direct summer sunlight should be anticipated and avoided, they may choose to have sunglasses always easily to hand or wear a peaked hat. Failing such solutions, the response to sudden bright light will appear exaggerated to others who are less affected – wincing or making an upset sound in response to the transition, closing the eyes completely for fifteen or thirty seconds, suddenly slowing pace, and so on. If questioned regarding their apparently overexaggerated reaction to bright light, our subject here may express irritation – the experience may so unpleasant and debilitating that unwanted questions only compound the situation.

Clearly to someone who adjusts to bright light more rapidly our subject’s actions seem overblown and unnecessary. The mix of responses they see resulting from activity of the CNS and ANS to protect the eyes, minimise discomfort, return to a point where vision can be used effectively, or express frustration and discomfort do not make sense. They, too, are experiencing the same bright sunlight and have found none of this to be a necessary response. More than that, they have years of experience with other humans in the same situation who also do not react in this apparently exaggerated way. It is not unreasonable to deduce that our subject ‘has something wrong with them.’

Let’s follow that story a little further. Our subject responds to bright light in this way, and has done so throughout their life. They have come to not just expect the unpleasantness of sudden bright light but have found ways to mitigate the effect such as carrying sunglasses. They are also aware of the ways others view their reaction to bright light and have chosen to suppress their response somewhat to limit unwanted questions. The prefer places with dimmer light or where transitions from dark to light and back can be more easily managed. At home, they use indirect lighting, and dimmer lights, and often can be seen watching TV through almost closed eyes. They brightly lit shops, avoid shopping at night and sun holidays. At work they can often be seen wearing a baseball cap at their desk, and though they have a car they avoid night driving, especially on motorways or unlit country roads.

All the above details are the result of a lifetime of trial and error, many hours of planning and decisions around how to go to – or avoid going to – certain places or achieving certain goals. Our subject is an expert on avoiding and dealing with bright light and sudden dark-light-dark transitions. They enjoy woodlands and twilight in ways that few others can appreciate, have exceptional night vision and peripheral vision.

Aside from appearing a bit of a freak at times when caught out by light transitions this dramatic neurological divergence from the human norm goes mostly unnoticed by others. However, this has come at the cost of opportunities missed, time spent in distress or perhaps embarrassment, and in planning which others never see. It also means our subject uses visual data in different ways to their peers, favouring certain kinds of information, having access to information others do not notice, being required to look away from sights others experience directly. The mental picture of the world they hold in their head is not the same as others around them hold. It is filled with details, favours different types of environment, flags up risks that others do not need to worry about. What the world looks like is different, and that picture of the world arises from birth – and perhaps before – through the complex interplay of their peripheral, central and autonomic nervous systems. It centres on their vision but includes a preference for auditory cues over visual, greater attention to forward planning, a subtly more acute sense of touch, a slightly raised pain threshold, a slightly raised baseline of stress, and so on.

I can speak in detail about this person because I am speaking about myself. I know that my experience is different from most others around me, and that occasionally I will encounter others who are more strongly affected by similar phenomena, or who have developed less effective mitigation techniques. I am also aware of others who are affected in similar ways by auditory, olfactory, tactile etc. phenomena. Unlike most humans, subtle signs make such people more obvious to me than they will be to most people, and vice versa. We spot each other while passing through the ‘tunnel of hell’ known as Duty Free at airports, or while seeking out poorly lit corners on train platforms. We notice each other reach for sunglasses while entering a shopping mall rather than while leaving, carrying noise cancelling headphones around the neck, wearing peaked caps, wincing apparently at nothing in a crowded street, squinting in the cinema lobby, sitting outside a noisy café on a cold day.

While all this makes for a different way of approaching daily life and a different worldview, it can also carry real disadvantages that result in the deliberate othering of neurodivergent people.

When your pupils are wider than most people, you get suspected of being on drugs. When you enter offices or peoples’ homes with a frown and your head cast down, you get suspected of being angry or unhappy. When you squint or close your eyes during a meeting or job interview, you can be suspected of being nervous or not fully honest. These are real situations with real consequences. They can lead to missed promotions or poor work reviews, they can cause people to avoid inviting you to events or chatting with you, they can get you arrested and they can prompt certain people to do violence to you.

Why does that happen?

The answer to that, on one level, is the world ‘normal.’ There are other answers but they will be addressed elsewhere.

Based on an original from Wikimedia. Bell-curve chart showing Standard Normal Distribution. On a light yellow background, the central area under the curve is green representing the first standard deviation from the norm; to left and right of this are areas in blue defining the second standard deviation, and beyond these small areas in red representing the third standard deviation. The percentage of the whole each standard deviation includes is indicated as percentages associated with each area.

The chart above shows what is called a normal distribution. It is a way of charting what turns out to be a close approximation of the spread of results from testing a group of similar things. It is, for example, a way to show the range of heights in a population of people of similar age. The more people you include, the more the results tend to align to a smoother and smoother approximation to this ideal perfect curve. Because there are a lot of humans and we have gained the habit of measuring more and more details of human characteristics, distribution curves like this are used in many fields of research.

There are a few parts to this chart worth looking at. Firstly, there is the middle line, the norm. When we talk about things being ‘normal’ this is what we are referring to – things that are at or near enough to that centre line as to make little or no practical difference. Most of any population will typically end up ‘normal’ in this sense. We have ways to measure how close to that normal line an individual is, and have carved up the results into standard chunks based on whether they lie inside or outside a certain degree of deviation from the ideal normal position. Those threshold lines are called Standard Deviations (SD) and are positioned at evenly-spaced points along the base line. They divide up the results and we find in this Standard Normal Distribution that the percentage of results that fall inside the first standard deviation (the green section) totals 68.2%. That means more than two-thirds of this population are regarded as being pretty close to where we would expect them to be, based on the position of the norm. Actually it works the other way around – the position of that norm and the reach of the first SD are the result of testing data, not the other way around.

Having accounted for more than 2/3 of the population we already can now say that a large majority are ‘normal’ or so close as to make little real difference. The second SD (the blue sections) carves off another 27.2%. We cannot treat them as even approximately ‘normal’, they are not part of the majority 68.2%. However, they are not total outliers. Let’s call them ‘quirky’. Now within the normal and quirky groups we have accounted for 95.4% of this population, leaving just 4.6%. A real minority of extreme cases. Whatever it was we were measuring, be it IQ, how far you can throw an orange, how many kings of France you can name, how tall you are, or how sensitive you are to rapid transitions from dark to light conditions, there is no doubt that you are a real outlier. In any group of 100 people we expect to find only four or five people like you.

Throwing oranges a long way is really not a characteristic that plays a major role in daily life. However, if your ability to function effectively in the workplace for example requires that you are not subjected to glaring artificial light, or fluorescent lighting, or blue-toned light, particularly in workplaces where many individuals share a common space, seeking what we call accommodations can be problematic. Failure to persuade an employer to provide those accommodations can mean negatively impacted performance, increased absence due to stress, migraines, or losing a much-needed source of income when you are forced to give notice, or are, as it is called, ‘managed out of the organisation.’

Numerous parallel examples could be provided that highlight issues accessing shopping areas, driving, using public transport, performing at school or college, accessing social events at concerts, pubs, cafés, theatres, hotels, festivals and so on. The nature of the sensitivity may not be vision either, but hearing or smell or other senses.

What matters here is not the nature of the neurological difference but that it lies well beyond the range of experiences of the great majority of the population, outside that second standard deviation marker, and that it places constraints on a person’s ability to carry on what we have reason to regard as normal everyday activities.

Much has been written about this issue. The surface has even been scratched, with legislation requiring, for example, employers to implement a frustratingly vague thing called ‘reasonable accommodations’ when required. There are also other faint scratches – an hour twice a week at a supermarket at otherwise quiet periods when noise and light levels are reduced – but such efforts serve as much to highlight just how inaccessible this modern world remains. Two hours a week will represent less than 2% of the opening hours of many supermarkets. The other 98% of the time the store remains a hostile environment.

There is therefore some reason to view such initiatives with scepticism. The supermarket chain that proudly applauds itself for its accommodating policies is, in truth, seeking to secure the revenue from a minority while at the same time channelling that minority into specific timeslots. This is a form of ghettoization, and it needs to be viewed as such.

But that is not the purpose of this piece. It merely sets out a context.

Effective no-go areas in public space that are hostile to one or more minorities have been challenged and to some extent addressed – braille signage, installation of lifts and ramps, accessible toilet facilities are familiar example. However, it is easier to recognise and address the needs of individuals who are identifiably disabled by steps, narrow doorways or non-tactile signage. In the main, accommodations to address those needs are additions to what is already in place to facilitate the majority of the population. Braille on a sign does not impair a sighted person’s ability to read the printed version, and a ramp does not prevent people from using steps – or indeed walking up the ramp.

However, when an accommodation involves changing the level of lighting in a shared office space, the ambient temperature, or prevents staff from wearing perfumes, the situation changes. It is not only the building owner or the business that is being asked to make adjustments (and carry the costs this potentially entails). Other users of the space are now required to work or shop or live or study in an environment that has changed for everyone.

In reality, the change may actually turn out to impact those others minimally nor not at all. The changes may even turn out to save a business lighting costs and provide a more comfortable workplace for all staff. But arguing for that is not in any way a simple task. This is compounded further by the invisibility of the disability the person seeking accommodations has in that environment.

This situation not only disables the individual when accessing a workplace or school or retail outlet. It impairs their ability to advocate for change more generally. The great majority are asked as an act of faith to accept a tiny minority are disadvantaged by experiences that they cannot even detect, accept that this undetectable need has a real impact on the ability of a handful of people to carry on their normal daily activities, accept that everyone else should accept changes in their lives as a result. The argument that they will not be negatively impacted by those changes is unprovable without actually implementing the change. It is not hard to appreciate how quickly such an advocate can be shifted into the Troublemaker category. When that person is identified as a member of a group associated by many with emotional outbursts, inexplicable behaviour, intellectual incapacity, or aggression for example, regardless of how inaccurate those ideas may be, their ability to effect any change is even further limited.

This is essentially an invisible disability hidden within a hidden disability hidden within an invisible disability. This is what happens when an Autistic person is unable to advocate for accommodations, because they face not just the obstacle of making contact and citing equality legislation. In order to advocate for themselves or another, or indeed for a group of people, they must first overcome barriers that make accessing an environment problematic, then overcome preconceptions about their value as a member, student or employee, then deftly bypass assumptions about the credibility of ‘people like that’, then frame their needs in a credible way without being in a position to present tangible evidence, find a way to define their needs as ‘reasonable accommodations’, and having achieved this then overcome the inevitable negative response from the 94-95% of other shoppers, students or staff for whom the change represents an inexplicable, unwanted and potentially irritating change.

Each of us, as citizens, is afforded rights within the community that are designed to enable us to carry on our lives freely, safely and without harm. Where those rights are restricted we, as citizens, have a duty to push back, not just for ourselves but for all. That duty is also a right. It is a freedom to advocate, to act for the common weal. The value of an individual’s contribution to the community is greatly enhanced by such efforts and this is widely acknowledged by our peers. When a person is prevented, through environmental factors, or assumptions about credibility or capacity, from performing that duty, their contribution to the community is limited, their perceived value to society as a whole is limited, and in a feedback cycle, they are seen as a troublemaker to be opposed rather than as an advocate. That cycle closes open doors, shuts ears, withdraws opportunities, limits access to places of power and social contact. Those who do not fulfil their duties do not deserve their rights.

Othering is a complex, subtle process. It goes far beyond blatant acts of exclusion or discrimination. It is not just about shouting insults at the ‘thick kid,’ or not recruiting someone from an ethnic minority, it is about a society the very fabric of which is constructed not just for the advantage of the advantaged but for the disadvantage of the disadvantaged.

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These words were brought to you with the assistance of:

UB40, Signing Off, 1980
Tom Waits, The Heart of Saturday Night, 1974
Tom Waits, Swordfishtrombones, 1983
Tom Waits, Heartattack and Vine, 1980
Tom Waits, Nighthawks at the Diner, 1975