by Tom Cutler
In historical cases, there are certainly shared and suggestive signs that point to Asperger’s. Typically, the subject is an intellectually bright man, but odd, alone, and averse to human contact. He may be preoccupied with sameness and routine, with his own idiosyncratic ideas and peculiar enthusiasms — sometimes useful, sometimes ludicrous — which he pursues relentlessly. Fashion is of no concern to him. He has a tendency to wear unusual clothes, not merely unfashionable but often from a previous age: an old-style suit maybe or something amounting to fancy-dress.
Some of these men, and as we are increasingly discovering, women, are notably crisp and fastidious; others are remarkably scruffy and disorganised. Often they are inconsistent. Dr Watson describes his flatmate:
An anomaly which often struck me in the character of my friend Sherlock Holmes was that, although in his methods of thought he was the neatest and most methodical of mankind, and although also he affected a certain quiet primness of dress, he was nonetheless in his personal habits one of the most untidy men that ever drove a fellow-lodger to distraction.
Once upon a time, people such as Cavendish and the water-loving Rokeby were frowned upon; today, we understand more about the context of it all. People like this may seem very strange or they might appear to be fairly typical, if quirky, Joe and Jane Bloggses, charmingly preoccupied with the taxonomy of Namibian birds or mapping the heavens. Judy Rivkin, Executive Vice President of the US Asperger Syndrome Coalition, told the New York Times, ‘Many Asperger’s people seem gifted and normal, and maybe they are in some regards. But that doesn’t mean that they don’t have to face profound problems.’ Most Aspergers long to fit in, to have friends, to be accepted by others, they just don’t have the social wherewithal to make it happen.
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When I was studying Fine Art at university, bohemian parties were a frequent affair. Very much wanting to fit into this world, I would force myself to go, taking on board copious amounts of Dutch courage in advance. But, as others danced or snogged, I usually ended up alone, looking through bookshelves or sitting detached in my rather formal clothes, staring into my glass. Everyone else seemed to have been given the stage directions in advance.
If I gathered the nerve to approach a group and introduce myself, I would manage the whole thing awkwardly and be met with blank stares and furrowed brows. My struggle to carry on a conversation while containing and concealing my fright could make me appear offensively offhand or aggressive. I always seemed to say the wrong thing and people found me brusque, abrupt, or stupefyingly rude, and I would find myself subtly, or forthrightly, repulsed. Thinking back, I suppose I did not seem bohemian so much as unnervingly strange. But when they objected to my presence, it always came as a complete surprise to me. At one party I said something so badly wrong that the young hostess burst into tears. ‘Get him out of my house!’ she cried, and within seconds two of her rugby-playing friends had deposited me on the doorstep, coat in hand. I was obliged to walk three miles in the rain, back to my digs.
The other thing that often happened was that I would be spotted by some lonely bore, who would gravitate towards me and occupy me for eons on his pet subject: the proper way to coil electrical cables, Star Trek, or, on one particularly dire occasion, the serial numbers of drain covers. This drain fan, who was a BBC engineer with a beard, insisted on taking me outside to show me a particularly fine sewer lid. As a man alone at a party, these characters seemed to recognise in me a kindred soul, and would cling to me like garlic skin to a wet finger.
In 1985, a British study looked into the idea that the social problems of autistics are down to the special difficulties they have in understanding the beliefs and wishes of other people. Professor Uta Frith, assisted by Simon Baron-Cohen and Alan Leslie, published an article, ‘Does the autistic child have a “theory of mind”?’; that is to say, does he or she understand that other people have minds? Frith and her team concluded that there is, in autistic children, something they called ‘mind blindness’. Grasping what others think, rather than what is happening in the physical world, is vital, they said, for complex social activity, cooperation, and learning from one another. A lack of this ability is a handicap. According to Frith, reputation management and political spin are possible only because of ‘mentalising’ — the ability to put oneself into somebody else’s shoes. This word overlaps with the term ‘empathising’, which Simon Baron-Cohen was to explore more deeply in later years.
People with an impaired theory of mind are said to have a different way of looking inside themselves. Unsurprisingly, they take longer to process social information because they need to analyse situations by using their intelligence rather than picking things up with an intuitive ‘sixth sense’, as others do. Naturally enough, socialising tends to exhaust them.
Some of the attributes that flow from an impaired understanding that other people have their own mind are the inclination to be breathtakingly honest and the tendency to do and say things which others find rude, disrespectful, critical, or harsh, with the associated lack of understanding that certain subjects are likely to cause embarrassment.
As a child, I was taught that, if offered some cake, I was to survey the plate and take the smallest piece. If there wasn’t enough to go around, I was to decline. When visiting Germany as a schoolboy I noticed that if the Germans wanted cake they said so. If there was a bigger bit, they took it. If it ran out, it ran out. This seemed a better, more straightforward way of going about things, but I often came a cropper and had to learn not to reply to a question such as ‘Does this dress look okay on me?’ without mulling over the likely consequences of a straight answer. I have realised that an unvarnished expression of opinion is not the right response to such questions, which are intended to invoke approbation. I have to stop myself saying to a woman friend, ‘Have you put on weight?’, just as a child might ask loudly, ‘Why is that man so fat?’ Once, when an acquaintance told me he had just had cancer diagnosed, I asked him, ‘Will it kill you?’ He took offence, but to me it seemed a perfectly sensible question to ask.
Along with forthright straightforwardness there is a tendency for Aspergers to ‘overshare’. This ungainly term refers to their impulse to say too much, to give too much personal information. This is especially noticeable in formal situations. ‘Sorry I’m late for the meeting but I had to go up to the toilets on the third floor and my fly got caught open’ is the kind of thing that makes colleagues wince. Being socially naive, the Asperger might not pick up on the frowns and sidelong glances that tell others in the group that a social error is being made. In most cultures, the penalties for making a social error are severe, and people can find themselves suddenly repulsed, abandoned, or fired.
Importantly, those with an impaired theory of mind can also have great difficulty in reading the messages in another person’s eyes. In 1997, the Autism Research Centre created the ‘Reading the Mind in the Eyes’ test, in which subjects were shown tightly cropped, black-and-white ‘letterbox’ photographs of the eye-region of a series of human faces and asked to select, from a short list for each picture, a word to describe the emotion in the eyes.
Women in the general population did slightly better than men, and typical people did significantly better than people with Asperger’s syndrome. The test showed that normal adults could recognise mental states from the smallest cues, just the subtle expressions around the eyes, and that this ability, to a greater or lesser degree, eluded Aspergers.
A particularly distressing difficulty for brothers, sisters, girlfriends, boyfriends, wives, husbands, and friends is the reduced or odd communication of love and affection that is at the core of many Aspergers. They might express affection very briefly or at low intensity, and often seem puzzlingly cool. Sons or daughters may reject embraces from mothers and fathers, brothers and sisters. Aspergers can be as emotional as anyone else but they must be allowed to show it in their own way. If a greater display of love or affection t
han they can manage is heaped upon them or demanded of them they may become confused or overwhelmed and go into ‘shutdown’, a word used to describe the impenetrable withdrawal of autistics into themselves.
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I once saw a motivational quote in a café. ‘Be yourself,’ it said, ‘everyone else is already taken.’ But for an Asperger, being yourself can so often lead to misconception and rebuff, so it is little wonder that many high-functioning autistics find themselves trying to conceal their condition.
In 2017, Laura Hull and colleagues published a study on the website of the Autism Research Centre called ‘Putting on My Best Normal: social camouflaging in adults with autism spectrum conditions’. The study looked at almost a hundred adults with a diagnosis of an autism spectrum condition, including Asperger’s, who had tried to hide or ‘camouflage’ their autistic traits in social situations.
The report showed that camouflaging was a common behaviour for people on the autism spectrum and that practice in the required techniques resulted in many being able to pass themselves off as ‘perfect counterfeit bills’.
The aim of the camouflaging behaviour was to mask and compensate for autistic traits, and to seem more ‘normal’. One subject said that her autistic lack of non-verbal signals was read as hostility, arrogance, or indifference, and there was an almost universal desire among subjects to fit in, and to make connections with others. Although the objectives of camouflaging were often met, the intense concentration and self-control were described as mentally, physically, and emotionally draining, like studying for an exam or interpreting a foreign language. All this I recognise. In social situations I often feel like the man walking downstairs who starts paying attention to his feet. Suddenly losing his instinctive ability, he can no longer control them properly and has to think how to walk.
Strenuous effort and constant self-monitoring are needed during social occasions, and unlike the easy cocktail-party ‘impression management’ that ‘normals’ seem to take in their stride, Aspergers reported that the obligation to maintain a constant active camouflage was extremely challenging to their identities.
Subjects of the study often believed that, while successful in the short run, their efforts to ‘hide in plain sight’ resulted in the manufacture of a facsimile personality, with their ‘real’ self permanently hidden behind a false front. ‘Sometimes,’ said one, ‘I feel as though I’ve lost track of who I really am, and that my actual self is floating somewhere above me like a balloon.’
People masked their conditions in different ways. Chatting was a fearful prospect for most, so they prepared in advance. Some made it a rule to monitor and increase eye contact. Asking more questions was seen as the best deflection and camouflage. One subject described her process: ‘I usually … think up stories and how whole conversations might go before I have them, so I have responses practised, as well as potential things to say if the conversation dries up.’
This rehearsal provided reassuringly structured ‘scripts’ to fall back on. The problem was, of course, that people sometimes found themselves falling back on a bag of spanners because, despite constant self-monitoring, the process was not always a success. ‘I try to ask them about the things they like,’ said one subject. ‘Question after question, to keep conversation going, but sometimes it doesn’t work and they leave me.’ This is hauntingly sad. After such a struggle to share human contact, it seems a doubly unjust blow.
The emotions of Aspergers when they are in a group are generally quite unlike those of the gregarious, and their behaviour can therefore seem very odd and sometimes alienating. I remember a night at the theatre with friends. After the show, we headed for the bar, where we turned our attention to the identity of various actors depicted in yellowing photographs hanging against the flock-papered walls. A nearby couple overheard our discussion and stepped in to give us some unasked-for information about a face we could not identify. At first, I felt extremely uncomfortable, then adrift and alone, but my gregarious friend introduced us. ‘At this point,’ he remembered, ‘your face darkened, and friendly non-intrusive questions were met with blunt, unsmiling, monosyllabic replies which caused initial surprise, then obvious offence. I was as nonplussed as them by your behaviour but realised something was up so we drank up and left. Walking to the cab rank you got quite animated with me, asking, “How can you talk to those people? You don’t even know them.”’
Typical people are said to be like cooked spaghetti, soft and all mixed together, while Aspergers are more like uncooked spaghetti. If you try to bend them they snap. I have never been good in groups. Beyond two or three people I feel frightened, alone, and angry. This has landed me in all kinds of trouble, but trying to explain it to people has never got me very far. It is as hard as trying to tell a man who enjoys Brussels sprouts why and how you loathe them.
Let’s say I am out to dinner with two or three people, or perhaps I am at a party for a family anniversary. This is how it feels:
I am a child of four and my parents have lost track of me in the busy central railway station of a frightening foreign country. Cutlery is being rattled and dropped, trains are whistling incessantly, there is loud unfamiliar music thumping in the background, and dogs are snarling. I am wearing somebody else’s scratchy overcoat, which has something sticky on it, and there is in the place an overwhelming smell of turpentine, eggs, gas, and coal tar. The fluorescent lights are being turned on and off every second, and people keep grabbing my hand. Others are firing questions at me, incessantly demanding something, though I don’t know what. I cannot tell whether they are friendly or dangerous. I don’t understand the language and there is no way to explain myself. Everyone seems to know something I don’t. They keep looking at one another. It is very cold or hot. Someone is screaming, sweat is trickling down my ribcage, and everything is buzzing. ‘Cheer up; it might never ’appen,’ says a disembodied voice over my shoulder. I look about desperately for anything I recognise but I am lost, my heart is in my mouth, and I feel as if I might faint. I cannot make sense of any of it, so I close in on myself, stare vacantly into the distance, looking aloof and unfriendly. I stop responding. I shut down.
This is how it is for me. For others it will be different.
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After Kanner and Asperger, the next big name to appear on the international autism scene was another Austrian, Bruno Bettelheim (1903–1990). For three decades he was director of the Orthogenic School for Disturbed Children, in Chicago, where he cultivated an international reputation as a world expert in the psychotherapeutic treatment of autism, which he believed has a psychological cause.
In his 1967 volume, The Empty Fortress: infantile autism and the birth of the self, Bettelheim popularised Leo Kanner’s original ‘refrigerator’ mothers idea — later rejected by Kanner — which proposed that autistic children were the victims of parental coldness, having been ‘left neatly in refrigerators which did not defrost’.
In 1972, psychiatrist Dr Marian DeMyer, of Indiana University, decided to test the idea in a vigilant, properly done trial. Comparing the parents of a wide group of ordinary as well as autistic children she found there was nothing in their behaviour to tell them apart: the theory appeared to be false. But to Bettelheim, who had always viewed science with a jaundiced eye, this was water off a duck’s back. He refused to admit that all advances in the understanding of the complex biological and environmental influences on the development of autism have been scientific. The psychoanalytic approach has got us nowhere.
Though Bruno Bettelheim’s church had been shown to be built on sand, there was worse to come. In 1990, the year of his death, Charles Pekow, a sometime resident of Bettelheim’s illustrious school, wrote a withering article for The Washington Post, in which he described having seen Bettelheim drag children across the floor by their hair. A second former inmate spoke of living for years ‘in abject, animal terror’, while another said that Bettelheim had once pulled
her out of the shower and beaten her, wet and naked, in front of a room full of people. ‘To put it plainly,’ remarked Leo Kanner’s colleague Leon Eisenberg, ‘he was a sadistic monster and doesn’t deserve serious treatment as a scientist.’
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In the 1950s, autism was believed to affect just four or five people in every ten thousand, but the inclusion of those with Asperger’s syndrome, and the growing awareness of the condition, has caused an inevitable rise in recorded figures. Estimates vary between countries, depending on how the cake is cut, but The National Autistic Society says that today autism is reckoned in the UK to occur in more than one in every hundred people. The UN recently estimated the UK population to be 66,573,504. One per cent of this strangely precise number is about 665,000 autistic people. The NAS estimate is 700,000.
The broadening of criteria and increase in diagnoses has caused some opportunistic characters to promote noxious or useless treatments, while still others have identified environmental causes that are not actually there. The result has been the popularisation of a good deal of harmful claptrap dressed up as science.
In February 1998 the august medical journal the Lancet published a remarkable paper by gastroenterologist and medical researcher Dr Andrew Wakefield, which he had written with twelve colleagues. The paper said that shortly after receiving the triple MMR (measles, mumps, rubella) vaccine, eight out of twelve children that Wakefield had studied had developed bowel problems and signs of autism. This was big news, as the MMR vaccine had been used safely around the world for decades.
In a press conference, Wakefield urged parents to give their children yearly single vaccinations instead of the MMR, in case the triple jab might be too much for some children’s immune systems. Flying in the face of accepted medical advice, as it did, this caused a worldwide news storm. Parents were understandably alarmed, and some decided not to give their children any jabs at all, causing a marked drop-off in vaccination rates, and a longer-term rise in measles cases.
