What Autism Is
What Autism Is
by Sinead Murphy at Brownstone Institute
Imagine that we do not know what blindness is.
Imagine that we describe people as blind very often, but that we do not know what blindness is.
Imagine that blindness is increasing so that, in some districts, three in ten children are diagnosed as blind. But that we do not know what blindness is.
Imagine that we can name many symptoms of blindness. Disinclination to shake hands. Tendency to fall over. Timidity of posture. Slowness of gait. But that we do not know what blindness is.
Imagine that there is posited a spectrum of blindness, including those who sometimes trip on the rug and those who must cling to another person before taking a single step. But that it is not known what blindness is.
Imagine that it is said that blindness may hide itself and affects many people who walk about with the appearance of confidence and respond to facial expression with seeming assurance. But that it is not known what blindness is.
Imagine that the numbers of those who retrospectively interpret their own lives and the lives of others as having been shaped by undiagnosed blindness increase and increase, so rampantly that we are all inclined to understand ourselves and others as at least a little blind. But that we do not know what blindness is.
Imagine that the attribution of blindness so gathers pace that blindness acquires the atmosphere of a natural human condition, a mere difference. But that we do not know what blindness is.
Imagine that strides are made in determining possible causes of blindness – environmental toxins, genetic predisposition, style of upbringing, experience of trauma. But that it is not known what blindness is.
Meanwhile, a small cohort with a blindness diagnosis cleave to the walls of their home, their room, unresponsive to the myriad strategies employed for inclusion of the blind – a small cohort whose tragedy is concealed in the general clamour for blindness; a pitiable few, wrecked and solitary in a darkness wholly overlooked. Because we do not know what blindness is.
The scenario would be implausible were it not real.
We describe people as autistic very often. Autism is increasing; in parts of London, three in ten children are diagnosed with the condition. Almost everyone can name some symptoms of autism: lack of eye contact, tendency to sniff at things, liking for routine, propensity for distress. Autism is understood as a spectrum condition, affecting celebrity achievers and those who cannot speak, dress themselves, or use the toilet. Autism is said to mask, hiding itself beneath the simulation of functionality. Autism is advertised as a natural divergence, so ubiquitous as to explain aspects of the lives of us all. Autism is attributed to a range of causes, from childhood vaccination to the impersonal routines of metropolitan societies.
Yet we do not know what autism is.
Meanwhile, a not-so-small cohort of young people spin and flap beyond the bounds of sympathy and significance, unable to access the consolations of human life, unable to get in. A not-so-small cohort whose tragedy is obscured by the general enthusiasm for auties; a strange race whose unique forsakenness has no words to speak its name. Because we do not know what autism is.
This cohort of young people is growing and not slowly, relatively unnoticed in the melee of autism-mania except by those charged with the heavy task of supporting it, a task made infinitely more demoralising by widespread innocence about what autism is.
It is beyond time that we try to dispel this innocence.
Why is my 11-year-old son indifferent to the world and those in it, though his mind is alive and his eyes are wide? Why is he able to double large numbers but unable to grasp that subtracting from a number makes it smaller? Why can he learn Wordsworth’s ‘The Daffodils’ by heart while being unable to understand the word ‘it?’ Why can he not call my attention? Why does he shout ‘Mom!’ very loudly, though I am right beside him and though he does not need or want anything and though his name for me is not ‘Mom?’ Why can he move the pieces on a draughts board in the correct way without ever aiming to win the game or knowing if he loses it?
Why can he not answer the question ‘What is your name?’ but only the question ‘Joseph, what is your name?’ Why can he repeat the morning traffic report but cannot understand that today is Wednesday? Why is he overwhelmed at any intimation that people’s lives end but unable to carefully cross the road? Why does he insist upon doing things that he does not like to do? Why can he recite the alphabet backwards, but cannot grasp the story of Jack and Jill going up a hill? Why does he remember the names of everyone we meet without ever wishing to join their fun?
What underlies these varied and curious manifestations?
If blind people cannot see, what is it that autistic people cannot do?
There is an answer to this question that has had some influence. It was proposed in 1985 by the psychologist Simon Baron-Cohen.
Baron-Cohen conducted an experiment to establish what autism is and concluded from it that autism is the lack of a theory of other minds.
If blind people cannot see physical things, autistic people, according to Baron-Cohen, cannot see mental things. They do not understand what other people expect or believe, what they want, what they think, what they feel.
Baron-Cohen’s experiment was a simple one. A group of four-year-olds, some with an autism diagnosis and some without, was prompted to attend to a scene in which there were two dolls, two baskets and one marble. The marble was placed in basket one. The first doll left the scene. The marble was moved from basket one to basket two. The first doll returned to the scene. The children were asked to predict which basket the first doll would go to to retrieve the marble.
The non-autistic four-year-olds answered that the first doll would go to basket one to retrieve the marble. The autistic four-year-olds answered that the first doll would go to basket two to retrieve the marble.
The autistic four-year-olds did not understand that the first doll would expect the marble to still be in basket one.
Baron-Cohen concluded that children with autism do not have a theory of other minds. They are, as he put it, ‘mind-blind.’
But Baron-Cohen’s experiment was autism-blind.
Four-year-old children with autism are certainly unable to develop a theory about what other people expect.
But this is because four-year-old children with autism are unable to grasp expectation.
And this is because four-year-old children with autism are unable to experience expectation.
Never mind that four-year-old children with autism cannot tell what other people expect. Four-year-old children with autism cannot themselves expect anything. They cannot be oriented towards a future possibility, no matter how basic that possibility is.
Autistic people do not lack a theory of other minds. Or rather, they do lack a theory of other minds but only because they lack something infinitely more fundamental.
Autistic people lack affinity with other people – the affinity which the rest of us cannot even dial down, the affinity from which arises not only the possibility of developing theories about our experiences of the world and those in it but the possibility of having experiences of the world and those in it.
The philosopher Sartre described a scenario to reveal the nature of human experience:
I am listening at the door to a conversation unfolding on the other side. Eavesdropping. There is a creak on the stairs. All at once, my experience is changed. What had been curious absorbtion becomes shameful awareness of my stooping posture, my covert operation.
The presence of another person – not even their presence, the indication of their possible presence – transforms my experience.
So utterly transforms my experience that my experience is revealed as not really my experience at all but wholly susceptible to the perspectives of other people, whether those other people are in the flesh, in the memory, in the anticipation, woven into the structures of institutions or embedded in the significance of everyday objects – if, while eavesdropping, my eyes happen upon my mother’s handbag, my curiosity might equally turn to shame.
This is what Sartre discovered: that I am not master of my experiences, that my experiences are always collaborative. That this is made salient only at moments of reversal does not gainsay its truth – before the creak on the stairs, my curiosity, and my careful concealment of my curiosity, and every other component of my experience, derived their meaning from a lifetime of being with other people.
Sartre was not overly pleased at his discovery. It seemed to destroy hopes for individual autonomy. How can I be said to be truly free if I am always implicitly in the presence of and affected by other people?
It is why Sartre wrote the infamous line, ‘Hell is other people.’
Sartre was surely wrong about that. After all, it is because our experiences are infused with the perspectives of other people that human cultures arise and take hold – ways of doing things, of thinking things, of feeling things, of seeing things. And it is because human cultures arise and take hold that our lives are given shape and have meaning.
The real hell Sartre could not have known about. It is comprised of immunity to other people and consequent imperviousness to culture, and therefore to meaning.
This hell is what autism is: blockage to the perspectives of other people so great that the conditions for human experience are not there.
My Joseph cannot feel curious. He cannot feel shame. He cannot be shy. He cannot be confident. He cannot feel sympathy. He cannot be resentful. He cannot tell the truth. He cannot tell a lie.
Because my Joseph is unable to be with other people – with, in the philosophical sense. His experiences, whatever they may be, are not shared achievements, are not woven through with the perspectives of other people.
If blind people cannot see, autistic people cannot share – incapable of the shared experiences that constitute and perpetuate human cultures, they are excluded from the human world. The most profound truncation possible, and literally unimaginable.
Baron-Cohen judged that his four-year-old children with autism were unable to see what other people expect.
He overlooked that his four-year-old children with autism had already spent one year, two years, perhaps four years, bereft of that attunement to the people around them from which infants and young children effortlessly derive an appreciation of the patterns of life and the predictability of events and so grow capable of expectation.
He overlooked that expectation is an experience to which four-year-olds with autism have no access, which they are neither capable of themselves nor, of course, able to attribute to others.
But there is so much he must have overlooked.
Presumably, Baron-Cohen’s four-year-olds filed into the experiment room before the experiment began. Autistic four-year-olds cannot file anywhere. The momentum and orientation of other people is something by which they cannot be affected.
Presumably, Baron-Cohen’s four-year-olds sat on chairs or on the floor waiting for the experiment to begin. Autistic four-year-olds cannot sit on chairs or on the floor waiting for anything. They are without the attunement that prompts children to do what people around them are doing or asking them to do, and have no receptors for the sense of purpose that gives meaning to waiting.
Presumably, Baron-Cohen’s four-year-olds were issued with simple instructions. Autistic four-year-olds cannot hear instructions. They do not know that they are being spoken to. They do not know what it is to be spoken to. The eye direction of other people, other people’s tone and gesture, are not available to them, do not touch them at all.
‘Now, children, shortly we will…’ Autistic four-year-olds cannot understand any but the most rudimentary words, spoken by someone familiar in a routine context. They may pronounce words, they may repeat phrases, but they cannot enter into reciprocal communication. They do not acquire language as a mother tongue, from the inside and through association with the people among whom they live. They will eventually acquire language from the outside, haltingly, partially, and without the usual motivations.
And then there were Baron-Cohen’s dolls. Autistic four-year-olds do not see dolls and what they do, any more than they see people and what they do. If Baron-Cohen was wearing a watch whose face caught the sun, the autistic four-year-olds were looking at that. Or at something else. Or at nothing.
Baron-Cohen’s conclusion, that autistic people do not have a theory of other minds, is like concluding of blind people that they do not see the sun. As if autistic people can understand everything but the perspectives of other people; as if blind people can see everything but the light. It presents as a limited restriction what is rather a wholesale exclusion.
Autistic people are not blind to other minds. They are immune to other people, and therefore to all those meanings that can only be grasped in concert with other people.
What this is like, this immunity to other people, is confounding indeed. About as confounding as what it is like to be a bat.
Still, it behooves us to reach for an analogy. Something to which it might be akin. Without that, we can neither properly support young people with autism nor fully appreciate their hell.
As a child, I used to receive a monthly children’s magazine. On the back cover was always the same puzzle. A photograph of an everyday object, taken so close-up that the object was unrecognizable. The challenge was to establish what the object might be without the usual clues of outline or context.
I have often thought of this monthly puzzle as I have negotiated the world with my son.
When Joseph was a four-year-old with autism, sometimes two policemen mounted on horses would make their way down our quiet street. A really very striking event – the horses were stunning with fulsome manes and gleaming tackle, and the policemen imposing from their height.
As the horses passed our garden gate, I would try to train Joseph’s attention towards them. Sometimes, he would turn in their direction. But his eyes never widened or lit up.
Was Joseph uninterested in the horses? Or did Joseph not see the horses?
Were the horses, for Joseph, like the photographs on the cover of my children’s magazine? Was there no outline, no context, to make them meaningful?
From where does a four-year-old distil the ability to identify two horses as the relevant object on a quiet street, and not the shine of their saddle buckles, or the brown of their groomed coats, or the blue of the sky beyond, or the sound of a motorbike in the distance, or the memory of yesterday’s swim, or a word from some radio advertisement?
From where do we derive our feel for the meaningful shapes and sounds of our world?
What is it that frames our experiences so that they are shared by those around us, so that we are all in one moment captivated by the horses?
It is the fact – the most basic existential fact – that our very perceptions are already shared achievements, cut through with the perspectives of other people, made meaningful in concert with those around us.
Everything that gives to the world its feel comes to us by being with others. So naturally, that we need not even exclaim ‘Look!’ for everyone about us to stare in wonder at a pair of horses on a city street.
So naturally, save for a four-year-old with autism who does not see the horses though they are right before him in their living, breathing enormity and though all about him marvel at their might.
We experience the world within the context opened up by our receptivity to the thoughts and feelings of other people. Autistic immunity to the thoughts and feelings of other people means lack of any context within which experience is possible.
Without the capacity for experience, autistic people have only bits and pieces of objects and events. Too close up for comfort. Without connections. Without dimensions. Fragments of the bones of the world, and no flesh to make them vibrant. Paltry buoys with which to keep from going under.
Joseph knows the date of his birthday. He knows that he will receive presents on this date. He knows that there will be a cake with candles. He would be a little upset if there were no presents or no cake but only because there always have been presents and cake. He cannot look forward to his birthday. He cannot feel special on his birthday. He cannot remember during his birthday that it is his birthday. He is as interested in his brother’s birthday and his neighbour’s birthday as he is in his own.
Joseph does not get birthday. He has the bones of it. But he has not the flesh of it.
The rest of us may dislike birthdays, we may eschew all birthday celebrations. But we cannot be without the meaning of birthday. We are helplessly captured by the very significance of which autistic people are helplessly free.
And as for birthday, so with everything. Everything that gives to life its feel. Fact and fiction, winning and losing, animate and inanimate, human and inhuman, past and future, man and woman, particular and general: all of the content that we use to have experiences, all the shapes of things that we learn without being told.
Joseph must negotiate life without this content, without the horizon in which life is brought to life. He has only the cold facts of some things. An uncertain and slowly amassed stockpile, from which he must draw to fashion experiences whose frailness we can never know.
Unaffected by the perspectives of other people, Joseph cannot see things in the round. And so he is locked out of the world of those about him, unable to be drawn away from an immediacy that makes no sense. Excluded from everything convivial, he is like the little match girl out in Winter’s cold.
Except that the little match girl wanted to get in, yearned to get in. Joseph cannot even see that there is something to get into. He does not strain to share what we share. He does not yearn for our world.
A blessing, perhaps. Such yearning would break your heart. But the strangeness of being without it is like nothing on earth.
To reach this strangeness and keep hold of this strangeness and draw this strangeness just a little closer will take you too from the world and never really let you back.
People remark of Joseph that he is in his own world.
That is not so. You cannot have your own world.
A world is formed with others, built of the common sense that shapes the experiences whose meaning relies upon the culture in which they are given.
A world is necessarily shared. Joseph is not in a world.
Joseph can certainly learn. He has already learnt. But not because a world has begun to form. Not because shared experience dawns.
Autistic people learn on autistic terms.
Objects around become recognizable if they are presented again and again. And they can be tagged, labelled, as in early language-learning books. But always in the particular. ‘Mama,’ not mother. ‘Dinner,’ not food. ‘Dog,’ not animal.
With enough labelling of its objects and events, life acquires the comfort of familiarity. Though the unassailable particularity makes the comfort a little thin. Distress is never far away.
More can be achieved by instruction in sameness. It is why repetition is so consoling. Breakfast today is like breakfast yesterday. This thing that we know the label for is like that thing that we know the label for. Breakfast is like lunch. Lunch is like dinner. Same.
Difference too can be taught, though it is not as salient.
And there is joy in sameness and difference. It is enlivening to draw lines between tagged objects. But deadening to have the line interrupted or disputed. Breakfast in the car en route to the ferry. Not like breakfast at all. Enough to bring down your world-of-cards.
That one tagged event follows another can be taught. First this, then that. To stabilise events sufficiently is a task. Grounds for distress are extended.
That one tagged event causes another can be attempted. Joseph and I are not there yet. Why umbrella? Because raining. Why raining? Because umbrella.
And false friends abound, and multiply with every advance. The computer is not working. The toaster is not working. The car is not working. The shower is not working…
…Mama is not working today. Confusion. Upset. Impossible to explain away. Your careless mistake will recede but only after a week, or a month.
Learning from the outside in is not easy.
Yet, even being with other people can be approached.
Joseph cannot call me. He cannot say ‘Mama!’ when he needs or wants something. A few times, he has been sick in his bed at night. In the morning, I have found him crusted with vomit. On seeing me, he has tagged the situation as ‘mistake.’ But he was not able to call me.
Calling out to someone relies upon the philosophical being-with that autism is without. The person is present to you though in another room. Out of sight but not out of you. You raise your voice to reach them, because their distance from you is in you. Their relation to you, what they can do for you, is in you. You don’t have to have a theory. Your experience is already formed by it and for it. ‘Mama!’
But you can teach someone to call you, from the outside. If you’re lucky.
About six months ago, Joseph shouted ‘Mom!’ for the first time.
Joseph’s tag for me is not ‘Mom.’ He was not calling me. He was doing what he does without cease, giving voice to a fragment of sound from his stockpile. Sometimes the line from a song. Sometimes an excerpt from a traffic report. Sometimes the sound of the washing machine’s spin cycle.
This time, from Joseph’s stockpile, his brother’s call for my attention. ‘Mom!’
An opportunity.
I rushed into the room. Right up to him. ‘Yes, Joseph? Yes? What is it? What does Joseph want?’
No answer, of course. But it was a start.
Having begun to plunder ‘Mom!’ from his stock of sounds, Joseph selected it again and again over the next days and weeks. Every time, I responded as if he had called me. ‘Yes Joseph? Is Joseph ok? What does Joseph want?’
Months later, we are embedding the connection. If this, then that. If ‘Mom!’ then Mama is here.
Joseph can now call ‘Mom!’ if he wants something. Not always. Not if he really needs something. He would still be crusted in vomit. And not using his name for me. And not with any variation of tone. If I am next to him, he shouts.
But a win nonetheless. Assembly between us of a small simulation of being-with, falteringly, excruciatingly slowly, and from the outside in.
Many will not recognise their child with a diagnosis of autism in this account of what autism is.
The number of children who receive a diagnosis of autism far exceeds the number of children who are like Joseph.
Indeed, ‘autistic’ is not even a good word for children like Joseph, suggesting as it does a kind of confinement to one’s self.
Joseph cannot use the word ‘I.’ He calls himself ‘Joseph.’ If I ask ‘Joseph? Joseph? Where’s Joseph?,’ he puts his finger against his chest and says ‘This one.’ Another of the bits and pieces on his stockpile. With no special status at all.
Our sense of self is as shared an achievement as our sense of everything else. It is being with other people that gives me my self.
Joseph is as unable to be selfish as he is unable to be selfless. He cannot act in his own interest any more than he can act in the interest of others.
But my account of Joseph’s condition does have relevance for all children with a diagnosis of autism, even those who are not like Joseph to begin with.
Because once the diagnosis of autism is given, strategies are put in place that will bring to the outside children who, whatever their troubles, are by their nature inside.
Ear defenders, chew toys, fidget breaks, safe spaces, electronic devices, chaperones and exemptions draw children with a diagnosis of autism away from access to other people and the world, initiating them into an outsideness that is not their native condition.
Unless we grasp what autism is at its core, we will continue to miss this separate, closely related phenomenon, this second-order autism of institutional manufacture from which vast and growing numbers of children now suffer.
A few weeks ago, Joseph and I visited a local school. We were there with fellow volunteers to receive thank-yous from the children we had hosted at our garden that year.
We went from class to class, accepting cards that the children had made, listening to their garden memories, being clapped and feted.
In one class of eight-year-olds, I recognised a little boy from the street we used to live on.
During the last couple of years, I had come to feel for this boy. Though I had never been close to him or his family, he would rush up to me at the garden and tell me that he missed me and talk to me of news from the old street. Once, at a Christmas concert in the school, a teacher asked if I would go into the corridor because this boy had seen me and wanted to talk to me. When I came out, he flung his arms around me as if his life depended on it, as if he needed to be saved. My only thought was ‘Hello? Someone? Archie’s not doing so well.’ The teacher had difficulty in prising him away.
Since then, I had seen Archie at the garden once or twice. He had had a Special Educational Needs Assistant by his side, who marshalled him around the margins of goings-on.
And now here he was again, on the day of our visit to the school. Seated alongside his classmates. With earphones. And an iPad. Festivities going on all about him but without him.
Does Archie have a diagnosis of autism? I don’t know. But I guess that he does. And that it is drawing him away from us, dragging him out of life.
This little boy, born for the inside, who had seemed to have an inkling of his fate, who had clung as best he could to random people while he could: unseeing now; unhearing; screened-off; outside.
Not because he has autism. Because he has a diagnosis of autism.
What Autism Is
by Sinead Murphy at Brownstone Institute – Daily Economics, Policy, Public Health, Society