Emotions and control

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

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.

© 2020 Stiof MacAmhalghaidh


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

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.