Tag: Neurodiversity

Emotions and the Well-calibrated Self

~ 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

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A Little Question

~ 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

~ 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

~ 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

About Humans

~ stivvanos ~ Leave a comment

Humans. When I was born there were about 3.4 billion of us. Today, we number more than double that. Between us this year, we will exhale about 2.5 billion tonnes of CO2. Not consuming food or driving or burning fuel, just sitting there breathing. Lots of humans. Lots of hot air.

Since my father was born during the summer of 1938, the world population has grown 3.5 times over, despite the intervention of World War 2 which eliminated about 3% of the global population. That war had many consequences. One is said to have been a ‘baby boom’ between 1946 and 1964, though in truth our population grew most rapidly between 1965-1970. The labels we assign to our world and to ourselves do not always reflect reality. The idea of what ‘reality’ is, when based on and around those labels, is equally suspect as a result. That is worth remembering.

When my father was five years old, with that World war in full flight, an Austrian psychiatrist living in the USA by the name of Chaskel Leib Kanner, more widely known as Leo Kanner, published a paper in the journal Nervous Child titled ‘Autistic Disturbances of Affective Contact.’ It is quite important and I will talk about this at length elsewhere.

Moving forward again by five years, the world had gained a kind of peace, and a new global organisation, the United Nations, was in its third year. The United Nations at the end of that year, 1948, ratified Resolution 218, more widely known as the Universal Declaration of Human Rights. Today, 71 years later, it is available in over 520 languages and dialects, the most translated document in human history.

Here are some excerpts to think about.

All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience
Everyone has the right to life, liberty and security of person
No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment
No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honour and reputation
Everyone has the right to freedom of movement and residence within the borders of each State
Everyone has the right to freedom of opinion and expression
Everyone has the right to freedom of peaceful assembly and association
Everyone has the right to equal access to public service in his country
Everyone … has the right to … the economic, social and cultural rights indispensable for his dignity and the free development of his personality
Everyone has the right to work, to free choice of employment, to just and favourable conditions of work and to protection against unemployment
Everyone has the right to rest and leisure
Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family
Everyone has the right to education
Everyone has the right freely to participate in the cultural life of the community
Everyone has duties to the community in which alone the free and full development of his personality is possible

Everyone has the right. Many rights. All those rights and more. Suffice to say, no nation on earth has ever fulfilled the responsibilities defined in this text. It is, some might say, merely aspirational. But, we can also see that aspirational nature as a call to action, an urging to all humans to reach for these rights, not to wait passively for them to be provided. That is a powerful thought.

That last one, however, does not seem to refer to rights, but to duties. The wording is somewhat awkward but it is one of the most important articles in this document and has had significant influence on other, legally binding, conventions and laws that have followed. Its purpose is to establish that rights come with responsibilities, that enjoying the freedoms of a community brings with it a duty to uphold those rights within that community. We reap what we sow. We can also view that duty as a right: the right to pursue the common good. That, too, is a call to action. Not only are we entitled to seek our individual rights, but to seek the rights of our community. We have the right to act collectively for the betterment of all. That is also a powerful thought.

This also introduces the word Community for our attention. The openness of that term is not accidental. Even communities that lie within national boundaries, overlap them, or are invalidated by states are included. A community, even, of those who share neurological characteristics and an aligned worldview as a result. For example.

These three events spanning a decade – the birth of a boy in Dublin, the publication of a paper in a scholarly journal in the USA, and the publication of a non-binding declaration in France – are the driving forces behind the material on this site, and in ways that are not necessarily obvious. What I will say is this – Each has relevance because of one word: Human.

What, then, is the focus on the word Human all about?

We are humans. There are an awful lot of us on this planet, with a multitude of nationalities, beliefs, cultures, ethnicities and so on. We are defined by these things – humans both recognise immediately others of our species and simultaneously seek to categorise those beings in all manner of ways. It is something we do from infancy, distinguishing caregivers from strangers. It is also something we do throughout our lives, both in positive and negative ways, to understand and to oppress, to support and to exclude, to embrace and to harm. Our own sense of our individual existence, indeed, is built on categorising in this way, defining the boundaries of our bodies, of our family, our community, our rights and responsibilities, our aspirations, ideas, fears and desires. Our lived experience is defined, circumscribed and filtered through awareness that we are both part of this species and also an individual.

We understand, as infants, something about the body we occupy and how its parts operate. We do not have a frame of reference for this process – it is an adventure without a guidebook. What we learn relies on experimentation and curiosity, but it also relies on our ability to experience, to think about those experiences, and on our environment, including those other humans we encounter.

Depending on our available senses, we come to be aware of things like the scent of our caregivers, the sound of the mouth noises they make, and the shape of their faces becomes familiar. We learn from them, and also come to realise that when we, too, gesture or make sounds they will respond in certain ways. We can signal we are cold or hungry or afraid. But we achieve this only through experimentation and analysis. There is, as already noted, no guidebook we can refer to. This was the case for me just as it is for a tiny infant today or for a little human 8,000 years ago.

In time, we assign roles to the humans we encounter, and develop a suite of responses we have come to settle on when we encounter them. We also observe them and their ways, learning a little about how they interact with each other as well as with us. We also come to realise that we are of one kind with those humans, separate from each other but, as a group, more separate and more different from that furry purring being that occasionally appears, and from the objects around us that do not seem to just exist.

As years pass, we discover the vastness of a place called Outside. We find it is jammed full of lots more humans, each of them particular and with whom we have, we find, different kinds of relationships – or none.

There are among them some little humans quite like us, and we find ourselves placed in proximity to them more and more. That creates an opportunity to interact with them, a mutual project in discovery. Sometimes they are displeasing, sometimes they are pleasing; some, indeed, are consistently displeasing. We come to realise that not only do all sorts of humans exist, but we need to find ways to interact with them and respond to them.

One thing we come to realise is that humans can use their actions and these cool things we are learning to use called words to give the impression that things are one way when, in fact, we later discover, they are not that way at all. This may be a trick we have encountered already thanks to our caregiver humans. In any event, the potential of this technique rapidly reveals itself. It is, we find, possible to conceal an object we like in order to prevent another human taking possession of it.

The possibilities, the possibilities.

We are stepping on board for a journey we call ‘growing up.’ Most of us do not look back. Ever.

But at this point unexpectedly and with no prior notice a disembodied voice interjects. These are the words it utters.

“In 1926, the Anglo-Irish author Lord Dunsany published a seminal volume in the as-yet unnamed fantasy literary genre. Titled The Charwoman’s Shadow, it makes use of a simple device – if we take an internally-consistent world and change one basic rule or circumstance, what happens next? In this case, the rule change was this, that a sorcerer can separate a person’s shadow from their body, keep it captive, and use its captivity for selfish purposes.”

The current tale also requires a key change in the rules of play in order to progress. In our case, we ask: What happens if the above account in which an infant discovers themself and their environment does not play out as expected? One important factor in this process is the ability to experience the environment through a collection of senses. If we remove one of those senses, how does that alter the course of events?

In particular, given that social interaction comes to play a significant role in the adventures of our young human, as it does for us all, how might the exclusion or limitation of one of those senses affect the way our infant experiences, understands and learns how to engage in interpersonal relations?

Fortunately for our purposes just such a circumstance occasionally arises, and we will not need to resort to tales of wizards or dukes, spells and magical entrapment. When a blind child is born, their experience of this world differs distinctly from sighted infants. Vision is, for most humans, one of their primary means of experiencing and learning about and from their environment. Vision enables a child to determine if a caregiver is focused on them or not, provides an instant and constantly updated information flow about the environment and the people and objects that are present. It can inform about not just what is happening and where but provide clues as to what is about to happen. It also facilitates the connection of information from other senses with concrete objects and people. Modelling that environment, linking sounds or textures or smells to physical objects, is a process that of necessity takes a different form and produces an outcome that appears to have distinctive differences.

The example of a blind child is chosen here for a reason – differences could be outlined as easily using the example of a deaf child. Vision plays a very particular role for most humans during the development during early childhood of a range of abilities that are then used as integral elements in social interactions throughout the course of life. A very obvious example is the ability to recognise and read body language. In particular eye contact and reading microgestures in the eye region to both convey and detect intention which holds such an important place in interpersonal communication in many cultures is of necessity absent from the repertoire of a blind person.

We are now a full two thousand words into this piece (as of the word ‘full’) and it would not be at all surprising were the reader, who has reason to expect that this would be a discussion relevant to the Autistic Community, to begin to wonder where all this is heading and whether that destination does in fact have any relevance to the world of Autistics.

This is the point where the connection arises.

A person does not need to be blind to find that signals and learning which most humans obtain through vision are unavailable to them. Indeed, as noted earlier, no infant arrives in this life with a guidebook and thus are provided with no prior knowledge regarding the possibilities certain uses to which vision might be put.

It requires only that a sighted infant use their vision in ways that differ from the majority of their peers for the information received through vision to differ from that gained by those peers. Here we will introduce a triad which will reappear on several occasions elsewhere on this site. In order to carry out an act a person requires an opportunity to do so, the ability to do so, and the inclination to do so. Opportunity, Ability, and Inclination. Without the ability to use vision, because a child is blind, kept in an unlit room, or has their eyes covered for example, information cannot be obtained through vision. Equally if a child has no opportunity to view other humans, perhaps because they are in a coma or are tended to solely by robots in some eerie futuristic scenario, all the ability in the world will avail them not a jot.

And now we come to the third possibility, and one somewhat more relevant to our purposes. While opportunity and ability as regards vision are factors that we should expect lie outside the ability of an infant to control, inclination certainly is not. Its defining feature is that it is driven by the person themselves, not by others. It is the outcome of decisionmaking, not of circumstances.

That makes for some interesting thoughts. The most important word on this site will now make an appearance: Why. Why might an infant decide to avert their gaze?

Why indeed.

This is one of the defining characteristics of almost all Autistic people, and it has been shown to arise from infancy. Distinctive and unexpected direction and course of gaze was identified from the outset by Leo Kanner and noted in his 1943 paper ‘Autistic Disturbances of Affective Contact.’ It has remained one of the core identifying characteristics associated with Autistics for 70 years.

Despite the prevalence of this characteristic, and the efforts of so many people to coerce Autistic people to act otherwise and use their gaze as other humans do, almost no thought appears to have been devoted to inquiring after the reasons.

There must be a reason. Indeed, there is a reason and every gaze-averting Autistic person is privy to that information. It should then be a regarded as extraordinary that non-Autistic researchers remain oblivious not just to this non-secret, but that they should even now repeatedly fail to ask, and when – as happens daily – Autistic people openly and publicly explain exactly why, they somehow appear unable to register this information.

This is all the more puzzling (and yes we will use that word) considering those same non-Autistic researchers make it plain that they are quite aware of the significance of this characteristic in shaping the Autistic worldview, how they interact with their fellow humans, and how those fellow humans respond to Autistic people in their midst.

It is a puzzle indeed. Humans. Sometimes the picture of ‘reality’ humans build is not a particularly accurate representation of the world. Sometimes humans avert their gaze, inexplicably, and miss otherwise readily available information. We might indeed ask why. Particularly so when the very question to hand relates to the inexplicable averting of gaze and the failure to detect readily available information. We are justified, it seems, to ask why so many do not ask why.

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Today’s words were brought to you with the assistance of:
The 13th Floor Elevators, Easter Everywhere, 1967
Swingrowers, Outsidein, 2018
X-Ray Spex, Germfree Adolescents, 1978
Wolves In The Throne Room, Two Hunters, 2007
Wolves In The Throne Room, Thrice Woven, 2017
Wolves In The Throne Room, Black Cascade, 2009
1349, Hellfire, 2005
Violent Femmes, Why Do Birds Sing?, 1991
Violent Femmes, Viva Wisconsin, 1999