Life without Order: Literature, Psychology, and Autism

Copyright © 1992 by Matthew Belmonte

I'm trapped in a network of wires and amplifiers, they're fixing the electrodes to my head now and I'm trying to figure out how I got here. In a different story this scene would be the unfortunate traveller in the mad scientist's lab, the young hero in the dragon's lair, but here the cause-and-effect is more mundane.

I've been studying neuroscience. I still haven't got used to the idea of being a neuroscientist, probably because I'm still not certain exactly what `neuroscience' is. I've never dealt well with abstraction. The last job I had was food service, and I miss it. In that line of work there's a concrete product: a room full of satisfied stomachs, a counter cleansed of grease. I had regular duties, and there was a comfort in routine, an abdication of responsibility in submitting to something bigger than myself. Acting out a routine or putting on a uniform is a fulfillment of the death-wish, albeit a temporary one, as any self-aware fetishist can tell you.

That plus my other job as an artist-in-residence got me three thousand dollars a year and an apartment, and now I feel I'm about to be rich beyond my wildest fantasies: some university wants to give me a thousand dollars a month for sitting around reading and writing papers. Well, okay.

The key words are `about to be'. In May the kitchen closed and the residency ended. It's July now, and I've been living off savings for a couple of months. I need money. That, I tell myself, is why I've volunteered for this screwball Doctor-Frankenstein brain-wave experiment. But it's odd how influences seem to have conspired to bring me to this place, this point. Most of what I do seems the product of a sly determinism, and this is no exception. I'm trying to understand the first causes, to reconstruct in detail how it happened that I arrived here. Like a deluded Laplacian, I maintain the fantasy that everything will submit to reason if only I can trace cause and effect back far enough.

I got into science when I was a child because it offered me stability. I was always uncomfortable with any situation in which there was more than one right answer. I didn't want the responsibility of defining my universe; I wanted to discover what had already been laid out for me. Science was my mother who would make all the choices for me and keep me safe from the horrible nondeterminism outside. In this respect I was very similar to my older brother. Neither of us could tolerate not being in control of our surroundings. We wanted some master plan, some canon, that would tell everything and everyone how to behave. We were poorly disposed toward change, because it's so much more difficult to make sense of one's environment when it keeps slipping out of one's analysis. Things precarious or capricious--a newspaper hanging off the edge of the coffee table, furniture arranged at arbitrary angles instead of rectilinearly, items not stacked or lined up in order of decreasing size--were abhorrent to us. The only solution in such a case was to attempt to fix the irregularity, or, if that were impossible, to leave the room and try to deny its existence. In contrast, regular, repetitive events--the rise and fall of shadows under street lights, the rhythm of a twig caught in a bicycle wheel, water flowing in systems of pipes--were comforting because they gave us the power of prediction and control. As we both grew older we diverged; this preoccupation with order began to dictate my behaviour less rigidly. I began to learn pragmatism and to accommodate wills and actions external to myself. I was still very shy with strangers, though, because people, especially people with whom one has no experience, are by far the most unpredictable elements of the universe, and the greatest threat to one's own control of it. In the back of my mind always was the similarity in the ways in which my brother and I dealt with the world. I was a scientist. He was autistic. At times it became difficult, at least qualitatively, to tell the difference.

Autism is a pervasive developmental disorder affecting speech, attention, motivation, and, perhaps indirectly, most other aspects of cognition. In autism, the brain's attentional system is affected in several ways. All the senses are distorted because of a malfunction in the attention-related neural hardware that gates and filters sensory input on its way to the cerebral cortex, with the result that sharp sounds, bright lights, and physical contact can be so intense that they're painful. Because it's so difficult and time-consuming for autistic people to shift their attention from one location in space to another, or from one sense to another, it's almost impossible for them to piece together any coherence out of a world that presents itself to them in fragments and extremes. They become so physiologically alienated from their surroundings that they must remain in a world of their own, hence the term `autism'. They tend to treat other people not very differently from the way they treat objects. They compulsively act out routine, scripted behaviours and often can't stop themselves from doing so. They feel compelled to lay down rules for the world, scripts whose directions everything and everybody must follow, and they become angry and frustrated when this doesn't happen. The most frustrating deficit in people who suffer from autism is the inability of many of them to produce spontaneous speech. My brother has never spoken at all.

I never thought my brother would have much of an effect on my life but as it's turned out he's one of these conspiring influences that have brought me here. It's almost impossible to interact with someone when they not only are unable to reply but also give no cues, no gestures, no direct indication of comprehension. I could tell from my brother's behaviour that we thought in similar ways and attached importance to the many of the same properties, but I never attributed intelligence to him. As a young child I became competitive, jealous of the indulgence with which he was treated, and I stopped paying attention to him except when he got in my way. As an adolescent I never knew what to do around him, so I did nothing. I had written him off, and when I left for university I pretty much forgot about him.

I had got into science because it offered me stability. At university I got out of science because I came to understand that this stability is only ideological. When I studied the history of science and learned of the rise and the downfall of natural theology in the nineteenth century I was struck by its relevance to my own situation. The idea of the natural theologists was that science and religion could be unified by viewing science as a process of discovering God's design in Nature. But when mathematicians began defining their own algebraic systems instead of discovering some unique and God-given order, natural scientists began classifying forms of life according to their own arbitrary systems instead of searching for the Grail of some Divine scheme, and everyone began to go ahead on their own initiative instead of waiting for God, people began to notice that responsibility for science was being taken from God and given to humans. And humans didn't want that responsibility.

Mathematicians at the end of the eighteenth century thought that they had the key to the universe. They were so confident of their impending mastery of reality that they were advising their sons not to go into mathematics because within a few decades there'd be none of it left to discover. Any prediction of the end of history should be cause for skepticism, and this turned out to be no exception. In a few decades at the beginning of the nineteenth century, mathematicians had gone from sitting on top of the world at the foundation of a God-given system of mathematics to whimpering at the prospect of a plethora of mathematical systems defined entirely by themselves. All of a sudden the security blanket of scientific determinism had been snatched from mathematicians, and they were feeling as forlorn as the denizens of Borges' Library of Babel, for the same reason. God--or Nature, choose your term--had deserted them. As Pynchon wrote in Gravity's Rainbow, `Either They have put him here for a reason, or he's just here. He isn't sure that he wouldn't, actually, rather have that reason_`.

This is the same discomfort that we feel with literature these days, in which the responsibility of constructing meaning has been taken away from the author and assigned to the reader. We find ourselves in danger of drowning in a sea of relativism and conflicting interpretations, and people turn to science as a source of absolute value, a real-world structure which, they think, can't possibly be destabilised the way the rest of the world has been. Have I the heart to tell them that they're wrong, that they're not safe anywhere? For science, like literature, is a human construction: scientists like to think that they deal with the real world, but actually what they deal with are their models of reality, one step removed. And as Pynchon did a very good job of pointing out, these models, like any other representation, can be built into fetishes.

So I came to understand that science is no escape from humanity. Science my mother had become science my captor. To me that meant that I had grown up and it was time to leave home. I quit my job in computer science research. I wrote a couple of books, lived in London, got drunk when I could afford it and tried not to think about my lousy job. I was sacked, evicted, got a little crazy and came crawling back to my old university town, where I settled into the life of kitchen worker and artist-in-residence. More of those conspiring influences.

What first got me into neuroscience was some of the research that I'd been doing for my novel. I was fascinated with alienation and with the idea that a character might be separated from his surroundings not only on a mental basis but on a physiological one, too. I focussed on fetishism because fetishists suffer from a hyperfunction of the human capacity for inventing symbols, for constructing meaning where there is none, and this capacity is what makes the real world such a disappointment for us. Anytime we construct a representation of reality we're engaging in a kind of fetishism. As scientists we invent perfect models in which phenomena are supposed to be mathematically tractable: the human construction of science is full of ideal gases, incompressible fluids, frictionless surfaces, and blackbody radiators. Similarly, as artists we filter the complexities of real life into representative texts in which distinct characters are involved in coherent plots evincing meaningful themes. As long as we're able to go on fooling ourselves, treating life as theatre, inventing the illusion of purpose, then chaos, meaninglessness, and death are kept at bay outside the door. This is what the ego is, this illusion of control, this false but necessary view of the world as something that can be mastered by an individual. Of course when the real universe fails to live up to our ideal models and scripts, we become dissatisfied and alienated from it.

The interesting biological observation in fetishists is that a small but significant proportion of them have temporal-lobe epilepsy, and many who don't have epileptic seizures do have epileptiform electrical activity in their temporal lobes. A deep structure in the temporal lobe called the amygdala (because its shape is reminiscent of an almond) is known to be associated with sexual behaviour, among other things. In monkeys and humans bilateral damage to the temporal lobes can cause Klüver-Bucy syndrome, a disorder that involves hypersexuality. The most celebrated case of a patient whose fetishism was linked to his epilepsy was that of a safety-pin fetishist in whom the sight or even the mental image of a safety pin would invariably cause a seizure. When interviewing patients for his study on the neuropsychology of fetishism, one researcher noted that they were obstinately routine and systematic, prone to compulsive acts and rituals, and displayed little spontaneity or warmth of emotion. Perhaps most significantly, he noted a general tendency to overvalue the significance of symbols.

All this contemplation of physiological alienation had got me thinking about my brother again. I recalled our childhood, and now that I was able to think of him as a person instead of as a rival, it struck me how lonely he must have been, and must still be. I found it interesting that fetishism and autism both are associated, though not universally, with temporal-lobe epilepsy. I read an article that argued for temporal-lobe dysfunction as the underlying pathology in autism and compared the social deficits of autism to those observed in Klüver-Bucy syndrome. I also read of the evidence for the existence of one or more genetically transmitted predispositions toward autism: autism is about fifty times more common in relatives of autistic people than in the general population, and ever since the original paper on autism in 1943 researchers have observed autistic-like behaviours in non-autistic relatives of autistic people. I was out of control with excitement. Like one of Pynchon's paranoids, I felt that I might be approaching some hidden relationship, some conspiracy of nature.

At some point I had decided that I wanted to understand the human brain. Maybe I was drunk when this happened. I knew that this goal was unrealistic but I was determined to go down fighting. Somehow I managed to convince people that I knew what I was talking about, and that's how I ended up here in this city, here at this university, and here in this mad-scientist laboratory with wires stuck to my head. It really isn't because I need the lousy fifteen dollars that they're paying me for this experiment. It's because I'm looking for something, anything, to link my brother and me at a physiological level. Perhaps this is selfish. It would be nice to be able to point to some abnormality on a recording or a scan and claim `Here is what makes me special; here is what makes life so much more difficult for me than it is for everyone else.' But of course, it isn't; life is the same big problem for me as it is for most people. It's difficult to disentangle the personal motivations from the scientific ones, and the selfish from the unselfish. All I can be sure of is that I'm curious. I don't believe that the biological basis of my similarity to my brother lies at the gross level of EEGs and brain scans, but I must explore all the possibilities.

I don't know what it is that I'm looking for. I may even be too dense to recognise it when I see it. I'm a reductionist: I look for explanations of complex phenomena in terms of simpler ones. In particular, I look for explanations of behaviour in the structure of the brain. However complex it may turn out to be, there must ultimately be an explanation for the similarity between me and my brother. I'm torn between two options, one, that there's a continuity between autism and autistic-like behaviours, the other, simply that my brother and I are both human. As an analyst I have a predisposition to exclude middles but I'm thinking that in this case the answer will turn out to be a combination of both.

Ever since its beginnings as a field, psychology has been acknowledged as an absraction laid on top of biology, and we scientists have a love-hate relationship with layers of abstraction. On the one hand, we wouldn't be able to function without them, because complex structures and phenomena would be impossible to describe if we had to characterise them down to their elementary interactions and particles. On the other hand, if our aim is a grand unification of all phenomena in terms of their physico-chemical underpinnings, we're compelled to break down these walls of abstraction. Such a fundamental conflict of desires makes for a neurotic science, and neurotic scientists. We're so anxious to reinforce our beliefs by finding physico-chemical bases for them, but we don't want to muddy the nice, clean, abstract waters by picking things apart and looking into them too deeply. We may also lack the tools necessary for such deep analysis. The result is that we latch onto facile reductions.

I'm sitting at a long table in a conference room. Someone's talking about vitamin B6, which is the centrepiece of the latest-and-greatest `biochemical imbalance' in autism. Knowing of the long history of such announcements of biochemical correlates of autism, and having witnessed the long and fruitless trail of drug therapies and diets that my brother has been through in attempts to offset these imbalances, I'm taking this with a grain of salt. The brain is a very complex organ, and autism is a very complex disorder of the brain, and anytime you're dealing with such a complex chain of cause and effect the world is bound to be crawling with correlations. The question is, which of these correlations are fairly direct results or causes of the pathology, and which of them are so many steps removed from it that they can't tell us much about the source of the malfunction?

Every Friday in the lab we have these meetings. It's very difficult for a bunch of reductionists to sit around and talk about autism, because it seems that all the regularities are either trivial or elusive; either our observations contain no information or we can't figure out how to extract it. The literature on autism is full of conflicting explanations and even conflicting data. Probably the reason for this heterogeneity of observations is a heterogeneity of etiologies: autism is such a fundamental and far-reaching syndrome that many biological abnormalities may be capable of producing its symptoms. It's frustrating to try to make sense of a disease when the only characteristic that all the people who suffer from it have in common is the behavioural symptoms that prompted the diagnosis in the first place.

Recently this situation has improved. If you've read any popular book on the brain you've learned that the task of the cerebellum is fine motor control and motor co-ordination. In the mid-1980's people began to realise that the old motor-control view of the cerebellum wasn't the whole story. Even in the late '70's, new anatomical studies had begun to reveal bundles of fibre tracts that tie in the cerebellum to a lot of cerebral structures that don't seem to have a lot to do with motor control. The cerebellum is connected to the hippocampus, which is essential for forming new memories and also has a role in sorting out incoming sensory stimuli; to the parietal lobe, which is important for spatial analysis and attention; and to areas of the frontal lobe that handle planning and strategy-formation, motor activity, word choice, and speech articulation. There are also connections to some areas of the temporal and occipital lobes. In short, the cerebellum is deeply involved, at least anatomically, in many structures that subserve cognition, and is therefore in a good position to facilitate--or to disrupt--processing in those structures. The cerebellum has been implicated in the semantic processing of language and in rapid shifting of attention, and may be involved in other cognitive activities also.

To me as a computer scientist, this arrangement seems logical. One of the first things that one learns when one studies applied mathematics or computer science is that problems that seem superficially very different often share mathematical structure and can be solved by the same type of computation. A big topic in neuroscience is the universality of structure and representation in brain tissue: whether a particular chunk of cortex subserves muscle control, hearing, or vision, it shares a basic laminar organisation and uses vector encoding to represent physical quantities. So it shouldn't be so surprising that a part of the brain whose major function seems to be motor control is also applicable to cognitive tasks: whether you're moving your arm or moving your attention, your cerebellum participates.

All this becomes very provocative in light of the recent observation of fairly consistent cerebellar abnormality in autism. The cerebelli of most autistic people are abnormally small when observed in brain scans, and a few are abnormally large. Microscopic study of dead autistic brains has revealed cell loss in the cerebellum. And to clinch matters, people suffering from acquired lesions of the evolutionarily newer portion of the cerebellum have the same difficulty as autistic people in performing tasks that require rapid shifting of attention.

Not long ago in the process of human evolution, the cerebellum was very small, and so was the cerebral cortex. In the higher primates, and especially in humans, the frontal lobe of the cerebrum and the lateral portion of the cerebellum have become grotesquely enlarged. Much of the cerebellum is unique to apes and humans, and even more is unique to humans alone. At the same time as this processing capacity was being added, the socialisation of these primates was becoming more elaborate. It's natural to hypothesise that evolution discovered that it could use the cerebellum for something more interesting than motor control. Could the cerebellum and its cortical connections be involved in social behaviour? If this were so, it would say a lot about the social withdrawal of autistic people. One possible explanation is that the abnormal gating of and attention to the senses caused by damage to the brain's attentional system results in a world so distorted, fragmented, and unpredictable that it's impossible to make sense of it. We know that the usual development of speech depends upon the ability rapidly to switch attention back and forth between an object or an event and an adult who's describing it. It's even been suggested that speech originates as selective orienting toward input from the senses. So the sensory distortion by itself is a formidable obstacle to the development and appropriate production of speech. Add to it the fact that the language-production facility of the cerebellum also is affected, and finding words and constructing sentences can become an impossible task.

It would have been incredible if after twenty-nine years of life my brother had suddenly begun to speak. It was no less incredible, in fact, that he began to type. A method called `facilitated communication' is allowing him and many other autistic people to express words for the first time, and is causing a re-evaluation of the cognitive disturbances in autism. With the support of his facilitator in damping out perseverative or impulsive movements, my brother is able to control his finger and tap out words on a keyboard. When one adopts the paradigm of attentional dysfunction it becomes easy to see why facilitated communication might work where more conventional methods of communication fail. The motor activity of speech requires precise timing and can't be subdivided into a series of very simple, un-timed actions. Typing, on the other hand, is self-paced: the sequence of key-presses can be interrupted or restarted relatively easily. Text is easier to control than vocalisation, just as theatre is easier to interpret than life, and a fetishist's script is easier to play out than a spontaneous encounter. You can re-read a text, or skip parts of it. A text can be contemplated. When a text seems too much to handle, you can put it down and come back to it later.

When I'm talking with my brother I try to behave as a text. Often he's not looking at me when I'm speaking. At first it was difficult to do without the non-verbal feedback that one is accustomed to in a conversation. The rest of us have learnt to depend upon these cues, to wait for them and to use them as indices of comprehension. I learned to suspend these normal rules of interaction when I'm with my brother. When he appears preoccupied or diverted I continue speaking, because I know that he's listening. When he jumps up and runs out of the room to perform some compulsive routine, I run after him and keep talking.

The abilities of autistic people in facilitated communication are surprising to a lot of autism researchers, so surprising, in fact, that many of them don't believe in it. They maintain that the sentences coming out of all these typewriters must be a Clever Hans effect, the results of unconscious influence of the facilitator upon hand movements. I wonder how much of their rejection is based upon detailed first-hand observation and how much is based upon the opposition of published reports to their preconceptions about autistic cognitive abilities. I don't doubt that it's possible for a facilitator to influence the output, but I know in the case of my brother that those words coming out of the typewriter are his.

Whenever you're dealing with a complex network of causal chains and loops, which the human brain and mind surely are, you have to distinguish between phenomenon and epi-phenomenon. Autistic behaviour seems strange to us, and the complexities of it are one reason why autism seems so intractable. But when one considers the outward behaviours of autistic people as epi-phenomena, that is, as the logical products of normal minds that have unfortunately been subjected to the distortions of autism, the situation becomes more clear. It's my view that because of their ailment the fragmented nature of the universe presents itself to autistic people with full force, and many of their superficial symptoms are exaggerations of the ego's normal defences against such a threat. If your ability to construct coherent representations of a changing and unpredictable world were impaired as it is in autism, then it stands to reason that you'd try to keep things as static and as predictable as possible. So perhaps the phenomenon that we should be trying to explain in terms of the underlying biology isn't anything as psychologically complex as preoccupation with routines. Perhaps the attentional dysfunction is what we should explain biologically, and then the more complex peculiarities of autism can be explained as psychological sequelae of this attentional problem and of associated difficulties in praxis.

My brother has a very sensitive and abstract mind. I wonder what might have been possible if he'd been able to communicate with the rest of the world. I wonder what he'd think of literature if he'd had access to the education necessary to interpret it. I wonder what he'd think of this preoccupation with the absurdity and cruelty of life, the importance of being able to treat it as theatre. I think of him as one of Beckett's characters trapped in a meaningless play that he cannot control, as one of Pynchon's paranoids or Robbe-Grillet's narrators desperate to see his universe as connected and to see himself as part of something greater, as Calvino's self-conscious constructor of representations, always aware of his failure, and frustrated at the tension between model and reality, word and idea. Am I reading too much into his situation? Am I a little too paranoid, groping for connections where there are none? I don't think so. These are fundamental human conflicts, problems in which my brother has been given the opportunity--or the curse--of participating constantly. All that literature has to say seems so pale and pointless when compared to my brother's direct experience.

I guess when you're a neuroscientist you're supposed to be able to think dispssionately and `scientifically' (whatever that means) about brain injuries. I suppose if one can master this kind of doublethink it's a good defence against this horrible world. My current project in the lab is identifying possible subjects for a study of the effects of focal brain lesions on attention. This involves sifting through the medical records of hundreds of people. The amount of suffering distilled into these printed pages is staggering. I see a seven-year-old girl with her skull drilled open and chunks of tumorous brain cut out, a five-year-old boy whose head was smashed in a car wreck, a three-year-old whose brain stem is being consumed by a tumour. This last one will be dead within a year. Most of these people we can't use. I guess that means we don't have to think about them. I really do wonder sometimes whether we're not trapped in a Beckett novel.

Literature can be poisonous, and sometimes I wish I'd stayed completely ignorant of it. Then maybe I'd be less cognisant of the arbitrariness and emptiness of life. Sometimes, drowning in a sea of relativism and despairing of any value that might be absolute, I think of my brother, how similar we are, how much he suffers, how I might have been him, and I think, if any of this neuroscientific work can benefit him, then there is meaning and purpose. Maybe. I suppose that that's what religion would say, and I'd love to be able to fall back on faith, on something bigger than I am, but everything up to now has told me what a big lie all that is. Behind the ideologies of science, literature, and religion, we're still helpless animals trembling in the face of an indifferent universe.