by Tom Cutler
In A History of Autism: conversations with the pioneers Adam Feinstein remarks that autism remains such a complex and bewildering condition that agreeing on a definition is nearly impossible, and could be meaningless. In discussing the enduring enigma the autistic writer Donna Williams told him that we are ‘merely the fools of tomorrow’.
The abolition of the term ‘Asperger’s syndrome’ in the most recent US Diagnostic and Statistical Manual is part of a trend to refer to autism as a single broad neurodevelopmental condition with many different presentations. But despite this, Asperger’s syndrome and classic autism are still commonly spoken of as two distinct things. I heard a man talking movingly about the daily problems of looking after his adult son, who still drinks from a child’s beaker; there is an ocean of difference between profound challenges like this and those of the absent-minded professor. Not only is there a range of severity along the continuum, but also a great liquorice-allsorts variety, and it seems reasonable, while accepting their obvious shared traits, to continue to recognise Asperger’s syndrome and classic autism as crucially different in important ways. This is how I have treated them in this book.
Yet whether they really are truly different expressions of the same thing or two — possibly more — quite discrete complaints, is, in fact, still undecided. Families may include severely impaired autistics and Asperger types both, so there seems to be a definite genetic overlap. What this is, however, remains an ineffable mystery. In the end, all we can hope is that those who come after us might understand more.
In his book, NeuroTribes, Steve Silberman encourages the idea that the autism/Asperger spectrum is part of normal ‘neurodiversity’, and that to remain resilient human groups need among their number people who think differently. Autism is a fundamentally different way of being, and a fundamentally useful way of being. If you doubt that take a look at the success of Silicon Valley, listen to Glenn Gould play Bach, examine the work of the staff of NASA, or watch Anthony Hopkins act.
It might be that over hundreds of thousands, or millions, of years natural selection has favoured different types of brain for different evolutionary niches, such that autistics may be showing an extreme of the ordinary variation that exists across the population. They are being selected, perhaps, for their skills at spotting patterns, and their aptitude for innovation. These are skills that help the group, even if those with these traits find the social world more of an obstacle course than more typical people. All the same, for the parent of an uncomprehending epileptic child who cannot look after herself, this might seem a high personal cost to bear for the general group advantage.
Simon Baron-Cohen’s scatter plot describing the huge range of systemising and empathising traits across the whole population of typical and autistic people alike (page 104) seems to me to paint a powerfully visual, useful, and true picture of this puzzle. It is not only a scientifically rigorous chart, with obvious trends and outliers, but also a beautiful and moving snapshot of all of us human beings, with everybody you know a dot somewhere in this great flock of humanity.
When I told some friends that I had been identified as having Asperger’s syndrome I got quite different responses, ranging from scepticism, to sympathy, to outrage. ‘Oh, Tom,’ said one of my female friends, ‘I’ve been telling you for years you were autistic but you wouldn’t listen.’
‘Have you?’ I said. ‘I don’t remember.’
‘I knew you weren’t listening. My nephew has autism and so does a dear friend of mine, and I could tell you were somewhere on the spectrum too.’
‘How?’
‘You have very high standards. You’re super funny in a very witty way but you’re too dry for some people to handle. They think you’re rude, aloof, or awkward, and you’re meticulous about your appearance — impeccable — every hair in exactly the right place, but you don’t take compliments well.’
That didn’t sound to me like enough for a diagnosis, but she had obviously spotted something. Just as the subtle behaviour and dress of a person who shares your political views can reveal them as members of the same club, without their having ever said anything political, the traits of Asperger’s syndrome can cause a blip on the autism radar of high-functioning autistics, and those who know autistics.
Nonetheless, Sarah Hendrickx had warned me that disbelief would be the most common reaction I would get in revealing my Asperger’s diagnosis to those I knew. When I told my friend Josephine she blew her top. ‘What idiot told you that?!’ she said. ‘Why can’t people just let eccentrics like you be themselves, without all this labelling crap?!’ She was so cross I decided not to tell her that, despite my not really wanting to belong to a club that would stoop so low as to accept me as a member, the diagnosis had explained everything, and released me, quite miraculously, from decades of depression. When someone you like and have known for a long time tells you that he or she is a member of a secretive religious cult, or not straight but gay, or not just eccentric but autistic, it naturally pulls you up short, and you may feel protective, wounded, or incredulous. Maybe it confirms something you have suspected but didn’t want verified. In any case, you have to readjust your perceptions of that person, and this is uncomfortable and can take time.
*
The first grey hairs were starting to sprout in my handlebar moustache. I had had it for thirty years, since those warm evenings on the river at the university, with Concorde flying over. For some time I had been toying with the idea of joining the Handlebar Club, a moustache society for gentlemen with ‘graspable extremities’, formed in 1947 in the dressing room of the entertainer Jimmy Edwards. Tracking down the club to a charming London pub I went to one of their monthly get-togethers and received a jolly welcome. I had half expected them to be gruff veterans of the Royal Air Force and there were indeed a couple of that sort, including one or two of the original members. But there was also a good sprinkling of other types. After more than a decade in the club I have realised that Aspergers are particularly well represented among the eccentric membership: engineers, train enthusiasts, penny-farthing riders, silent pipe-smokers, musicians, mapmakers, scientists, taxidermists, laconic military types, and people who enjoy dressing up — as well as a high number of social maladroits.
*
I had been invited to a large family party and had decided to break my journey to inspect the original maquettes of Calvert and Kinneir’s road signs, held at St Bride Library off Fleet Street, close to the office of the accounting firm where I had worked almost two decades before. I was greeted by a bearded figure in an apron, who introduced himself as Bob.
I held out my hand for him to shake because I thought this was what you are supposed to do. But somehow he didn’t seem to see it, though a moment later he glanced down at the vacant place where it had just been poised. This weird performance reminded me of a clip I had seen of President Kennedy ignoring the proffered hand of CIA director Allen Dulles in exactly the same way. Which social error had I made this time? Maybe like me, Bob disliked shaking hands. Was that it? It remains a mystery, though I am used to social stumbles like this.
Bob struck me as the kind of man who insists on sleeves being folded not rolled. He brought me out the maquettes: exquisite small-scale replicas of the proposed signs. I washed my hands with the alcohol gel I had brought along for the purpose, and lifting the top off the large Solander box, I folded back the first sheet of tissue paper. I could feel my heart pumping faster than usual. The mock-ups had been done on ‘fine fashion board’ supplied by Geliot Whitman Ltd, a family-run supplier of design materials at ‘16A Herschell Road, Brockley Rise, London S. E. 23. Telephone FORest Hill 9262 (8 lines)’. Trading since the 1940s, Geliot Whitman had been incorporated as a limited company on 24 September 1959, and had moved to the West End in the post-war boom, being finally wound up when buying off the internet became easier than a trip to Town. I know all this because I later researched the firm’s history at
Companies House — surely a very Aspergery thing to do, for the information was irrelevant.
Each traffic sign was a perfect miniature, the corner radii precisely cut with a sharp craft knife. The background blue was blackish, and the green the same. I knew that Sir Hugh Casson, Chairman of the Fine Arts Commission, had suggested a green ‘as dark as old dinner jackets’, and this was the sort of colour finally chosen for primary ‘A’ routes. The more recently made signs on UK roads use noticeably brighter blues and greens, which are also lighter in tone, such that the contrast and therefore the legibility are somewhat reduced. To me they look wrong.
The yellow, white, and black symbols, lines, and characters had been painstakingly cut from paper, and glued precisely in place onto the blue, green, and white backgrounds. The signs were finished and corrected with tiny brush strokes, visible under my pocket lens.
The white paint was still crisp and bright, though the white paper had faded, leaving slightly yellow some of the paper-cutout ‘holes’ or so-called ‘closed counters’ in such characters as the Os, Ps, and zeroes.
Sliding my finger sideways across the boards I could feel the characters, arrows, and diagrammatic roads sitting proud. Everything was crisp, perfect to the width of a hair except for the board showing Dunstable and Luton, where there was an obvious paint-and-knife correction to the interior of the zero of ‘A 505’. The hole had been cut five millimetres too far north — I measured it with the library ruler. Goodness knows how that mistake was made but the correction was scrupulous.
Jock Kinneir and Margaret Calvert had made these miniature likenesses with their own fingers: every mark and every cut. When these beautiful boards were bright and new, I was at school being told by a nun how infantile it was of me to pull the bobbles off my jumper.
After perusing the collection I carefully replaced the tissue sheets between the boards and closed the box. I felt as if I had been handling the Crown Jewels so I went up the road to decompress in Ye Olde Cheshire Cheese. There was a crackling fire in the grate and a young man in an expensive-looking suit was saying into his phone, ‘I’m actually below target.’ I got into conversation with a fellow who said he worked in advertising. I showed him a bar trick and discussed my ideas about the decline in the quality of advertising copywriting since the seventies. ‘You have a half-and-half brain,’ he said. ‘Half analytic, half creative: exactly the right mind to work in advertising.’
*
Arriving at the family party, which had been arranged for my parents, I was able, for the first time since my diagnosis, to cast an eye around my relations, with autism in mind. My siblings were there as well as my mother and father, along with some of my nephews and nieces. I had rehearsed people’s names before we arrived, even those I had known for years, as it is not only faces that throw me. My dad has always had the same problem, confusing the names of his children. He often calls me Paul.
He was, as usual, charming, if a bit odd, smartly turned out but with a quirky pair of trousers on. Though several of my mother’s friends had been invited, none of the guests was a friend of my father’s. As far as I know he has no friends, and as far as I remember he never has had. He seems happier alone with his nose in a book. He made me a charming apology recently for not introducing me and my brother, as youths, ‘to the world of men’. This was an entirely unnecessary apology, since I now understood the reason for his distance from pubs, sport, dirty jokes, and so on. Moreover, I never wanted any such induction.
A memory sprang up from the Polaroid-tinted 1970s. My father had received a letter from the Salvation Army Tracing Service. His mother, whom he had not seen for years, was trying to find him. Dressed in shirt and slacks, with a copy of The Acquisitive Society in his hand, he told me tersely what the letter meant, before exclaiming, ‘Bloody nerve!’ and throwing it into the fire. He never heard from his mother again. Decades later, his sister made tentative contact and he replied, agreeing to meet her only so long as she could assure him that their mother was dead. When I saw my long-lost aunt she looked like a twin of my sister Esther. My dad and his sister met once or twice but for whatever reason the flame guttered out.
My brother Paul was at the party, as hilarious and odd as ever. He told me he had started to play the theorbo, a kind of long-necked lute taller than a man. He mentioned the beginnings of arthritis in his middle finger, but said that playing helped. My three sisters were there: Esther, the music teacher, was her usual brisk self, and Rebecca the Christmas baby, who had gone on to develop anxiety in lifts and on the Underground. She has taken on the role of the person who looks after everyone. My youngest sister Ruth — the only one of us seemingly untouched by Asperger’s — was circulating: measured and normal. She has some high-powered job in a London art gallery.
Talking to a percussionist cousin was my son Jake, now a musician. He mentioned to me that he was finding the party hard because, ‘I adopt a different personality for everyone I know and in a group of people I’m not sure who to be. I don’t know who I am.’ I said I knew exactly how he felt: a different mask for every situation. Jake had been to music college but, like me, had found the authoritarian and social demands almost unendurable. I recalled that my father had, himself, been unable to stand university and had left abruptly. Had we all been unlucky or did the thread of genetic non-reciprocal non-conformity run through the three of us? Were we a recusant family in more ways than one?
‘There’s something different about Dad,’ Jake told Lea. ‘He’s never at ease.’
Life as the child of an Asperger can be hard. A parent who demands silence or has a meltdown if the toothpaste, or an ornament, is moved from its proper place will fill the house with dread. Now that I understand myself better I try to moderate my rules and unvarying routines but my strangeness is clear to those who know me best. As Jake had grown I had become more physically distant from him. ‘Why can’t you hug me, Dad?’ he asked. I did not know the answer to this question, except to say that it might be a sensory problem or that I find hugging adults emotionally alarming. This is hard on Jake, but it’s also hard on me. Thankfully he is much better at hugging people than I am.
Jake had taken the autism quotient test of his own accord and had scored 29, a number at the low end of the Asperger’s range. He told me that, though different from me in many ways, he realises that he has always had autistic traits. Like me he was a late developer, anxious, solitary, and extraordinarily emotional under a mask of calm. Unlike me, he spends hour after hour concentrating on music.
He spoke about my mother, who was surrounded by her teenage grandchildren. ‘There’s nothing behind what Grandma says,’ he told me. ‘She just says what she thinks. I like that. It makes her easy to talk to.’ If ever there was a piece of advice to people who were going to talk to an Asperger, this was it: ‘Say what you mean and mean what you say.’ But was my mother’s saying what she meant down to ordinary straightforwardness, or was there more to it than that?
She introduced me to an aunt, who told me, ‘I envied you when you were a boy: you always said exactly what you thought.’ What is it with this plain speaking?
I met some cousins I hadn’t seen since childhood: Sue, a librarian at Oxford University, told me she dreamt about the systemising aspects of her work: a world of rules and Dewey numbers. Her brother — my cousin Alexander — could not be at the party because he is a non-speaking, severely epileptic autistic man who needs round-the-clock care.
As the picture of autism comes better into focus, the number of girls and women on the spectrum continues to go up. Female Aspergers tend to internalise things more than men and boys, and appear better at camouflaging their true selves and fitting in. They might also express their condition by exerting rigid control over their eating. In fact, the Eating Disorder Service of the South London and Maudsley NHS Foundation Trust believes that more than a third of its patients are autistic. Further research is obviously needed into this newly
emerging and vital area.
It is said that such differences in the way male and female autistics present their condition have led to delays in diagnosis. Female participants in the Cambridge ‘camouflaging’ study reported that parents, teachers, and professionals were disinclined to make or accept a diagnosis of autism in girls and women. A lot of work is being done to get a better idea of the ratio of female to male autistics, and it is clear that there are many more female Aspergers out there than was once thought. But as with other enduring mysteries of this condition, the picture is still not sharp.
What is clear is that no longer can autism be seen as a severe, rare, and exclusively masculine disorder. Instead of a categorically distinct condition, associated with intellectual impairments, epilepsy, and delayed language development, it is now recognised as a common way of being which presents itself in girls and women as well as in boys and men, but in different ways for each sex. It ranges in its presentation from severe to slight, blending at its slighter end into ordinary eccentricity. In the upper part of the range it is often linked with good or above average intelligence of a peculiarly focused sort and is part of the diverse picture of normal human variation, bringing with it not only a variety of special difficulties but also particular strengths and skills.
As I wandered around the party, deliberately engaging people in conversation, I spotted autistic signs among my nephews and nieces: profound dyslexia and high emotionality here, remoteness or isolation there, severe anxiety, marked food faddishness, and shut-offness in other places. There really was a lot of it about. What I also noticed was the kindness of siblings and parents in helping those who were having a hard time of it.
Lea was laughing her social laugh and being talkative in her charmingly forthright American way. A laugh is almost the first noise she makes on meeting a new person — whether it is a shop assistant, a new colleague, or a friend. She is not laughing because anything is especially funny. It is a social noise, and people respond warmly to this gregarious, open cheer. In his biography of Paul Dirac, the plainly autistic theoretical physicist, Graham Farmelo says that Simon Baron-Cohen had mentioned to him the high proportion of autistic men who establish firm and happy marriages with foreign women. Baron-Cohen was unaware that the English Dirac had been married for almost half a century to an unceasingly talkative, exceptionally empathic Hungarian wife. When I mentioned to Lea that, like me, Dirac had married his antiparticle she laughed in recognition. ‘Yes,’ she said, ‘and I thought I was just marrying an eccentric Englishman.’