If you watch carefully, you will notice something about this child. Blink, and you’ll miss it. Only the very observant among you will see it. All right, are you ready? See that little girl there, the one in the long blue party dress? Yes, that one with the big trusting eyes and the short dark hair, made curly and ribbony for the occasion. Look at her dad- (Beatle haircut, Lord, he’s so young!)- he’s offering her a sausage roll. The large eyes widen further; they look dismayed by this sausage roll. She doesn’t eat it; she pushes it away. He hops her off the high bar stool and leads her by the hand to the big room, where the other children are watching Punch and Judy. Now this is the bit where you need to watch closely. Her mouth is fixed and smiling, but the eyes are not smiling. The eyes are full of fear. It’s fleeting to the casual observer; hidden in plain sight from most people. Inside, she’s becoming very distressed and she doesn’t know why. The other children like the show, but it isn’t funny. Inside, she feels several things: the most horrific, cringing embarrassment, as if she is part of the show. She feels conspicuous, everyone can see her, just as if she were lit up like the silver Christmas tree at the far end of the room. When they
laugh, they are laughing at her, the only one who has to have her dad with her at the party, the only one who doesn’t sit there, eating jelly and ice-cream and calling out. She won’t eat jelly
with ice-cream, because the ice cream leaves a nasty film on the jelly, and the colours yellow and red together once made her sick.
To her, the show is sinister, she sees beyond the puppets, she feels like she is one of the characters. She doesn’t know why, but Mr Punch horrifies her. All at once, in a feeling bigger than she is, she somehow comprehends that there is something not right about watching a man beat his wife and child, but she can’t give shape to this idea, not yet. The creepy high- pitched
voice penetrates her ears and terrifies her with something nameless. And she feels belittled and patronised by this show; can’t they see she’s not a child? She knows it’s a man in that tent, uncle something, but he’s not her uncle, so that’s not right. The audience cackles en-masse. Why do the children act the same, talk the same, eat in the same gape-mouthed, sticky-fingered way? Why do they all seem to know each other? She feels superior and inferior simultaneously. Most of all, as she mimics their smiling faces, trying not to disappoint her dad, trying not to let the sound of the laughter rise up in metallic shards of brittle-blue that hurt her brain, she is trying not
to cry. She swallows the scream and rising panic. She tells her dad that she doesn’t like it. She knows it’s not real, that it’s supposed to be fun. She can’t tell him why; she cannot find the
words. How does a child of five explain so many sensations assaulting her at once? She knows that it’s the same feeling she gets when she sees a pantomime, or Captain Hook, or the Witch in Snow White. It’s an itchy, squirmy, painful, breathy, cringy need to hide, whilst frozen in the headlights. She has to be taken out. Everyone saw and she can’t go back to the party. She has to go home.
It’s the 1976 family Christmas party for the workers. The little girl, the one I can see just to the side of my mind, is me. I was not diagnosed with autism for another 42 years.
Life for an undiagnosed girl on the autism spectrum in the 1970’s and 80’s was definitely challenging. For a start, autism wasn’t a word I had ever heard and it didn’t really exist in my
family’s consciousness until Dustin Hoffman’s portrayal of Raymond Babbitt on screen. When the ‘A word’ was mentioned, it was in tones of sympathy for the parents of those afflicted and locked into a world of their own, unable to communicate, or perhaps unable to feel any genuine, loving connection to their families. It was so ‘terrible’ and there was no ‘cure.’ After that Christmas party, I didn’t eat sausage rolls again until I was 24. The reason? My dad teased me by
telling me the brown crusty bits on the end were made of tea. Somehow, he knew what I was thinking. Thanks, dad! I hated tea. I still don’t drink tea; the overpowering smell makes me want to vomit. I still scrape the overcooked brown bits off sausage rolls. I still don’t eat jelly with ice-cream. I’d like to tell you that attitudes have changed completely, that the world is more accepting of what is now known to be a neurological difference (oh, how I hate the term ‘disorder’) but it’s still a challenge to live in a world that’s not quite designed for you. Of course, attitudes are more understanding now, and, in fact, reading memoirs by autistic adults has helped me to find insight into my own condition. However, what is particularly hard, what I have been told many times, is that I ‘don’t look autistic’ according to the picture many neurotypical (non-autistic) people imagine: The Good Doctor, Rain Man, even Sheldon from The Big Bang Theory. Sigh. You may even have seen The Accountant. But have you noticed something? All of these
characters are men. We are only just beginning to uncover the way autism presents in women, and women are having a harder time getting diagnosed. One historical reason for this is that Hans Asperger’s test group of children, his ‘little professors’ in the 1940’s, were all male, so many people believed that autism in females didn’t even exist! What else do you notice about these characters? That’s right! They all have super-power savant skills. Now, I do have some savant skills, but I recognise that many of us don’t. (However, I have yet to meet a person on the spectrum who isn’t singularly remarkable at something, however seemingly insignificant it may first appear). I don’t have learning difficulties - at least, not in the academic sense - I run my own business, I am very articulate, I am married with a child and, also, I am a woman! So far, I’m confounding some of your expectations, aren’t I? To totally debunk the commonly held myths, I’m rubbish at maths as well! But actually, Rainman and I aren’t so very different as it might appear- those of us on the spectrum do share many traits in common, it’s just that for some of us, particularly the girls, expected to be so proficient socially, they are often well hidden. And yet autism comes in so many nuanced shades that it would be impossible to define one experience as being exactly like another. And where are all the women on the spectrum, even in the stereotypes associated with the condition? Let me invite you into some more snapshots from my mind. Did I mention my ‘photographic memory?’
Here’s the thing: I have an eidetic memory for written text, and a bit of hyperthymesia. The latter means that I can recall almost every day of every year of my life in vivid visual detail, right back to lying in my pram, playing with the yellow elephant and duck pram rattles which bounced above me on a piece of wobbling elastic. I can ‘see’ the ornaments placed along the pelmet above my Nan’s living room window, and I can ‘hear’ my granddad’s motor-cycle engine roar up outside. I can see myself pulling out the contents of the sideboard; I remember twirling the wheels of my pushchair (my ‘tripper’), in which I rarely travelled as I preferred to push it. I can ‘feel’ the cold window-pane on my tongue as I licked it and pressed my face against it. I still shiver with delight as my Nan throws off her fur coat when I am pre-school age, declaring that she has ‘jumped out of her skin.’ This sort of recall, the kind which can tell you what shoes you wore to your 19th birthday party in 1990, and what the conversation was about, is really very useful. It is especially handy for the work I do in tutoring, where I may have to juggle as many as forty different texts in a term. However, it carries with it the unfortunate side-effect of being able to re-produce every unpleasant or painful feeling as if it were the very day it happened. So, the memory of that Christmas party still gives me the same feelings as I had then, and, even now, I
cannot articulate exactly what the emotions were, or why I had them. It means I still feel the horror of the vacuum cleaner, which lurked under the stairs like a T-Rex, necessitating a run-past en-route to the bathroom, and I still squirm and head behind the sofa at the sight of the Childcatcher in Chitty Chitty Bang Bang. If I don’t want to re-visit a painful emotion, still so
raw, I can deliberately choose not to, although this doesn’t mean that the emotions can’t be triggered, it’s just that sometimes I don’t know why. I imagine all my experiences as little boxes, hanging from an enormous iron tree. Layer upon layer of my experiences dangle there, all packaged up. And I can pick a box and put myself back to that time. The experience is visceral: I can smell, hear, touch, feel and taste the sensations as if projected upon the screen in my mind,
but I am right there in that moment. Sometimes I can choose to go back to something traumatic, quite masochistically, just to see if I have recovered from whatever I have deliberately boxed up, or maybe to try to connect with and recognise the emotion that I find so hard to articulate. As ever, this will prove that I will always find it difficult to move on, as the experience always feels brand new. So mostly, I try to keep the boxes closed. Don’t ever be fooled into believing that those with autism lack empathy, or are cold and unfeeling – some of the difficulties we
experience is caused by feeling too intensely – emotions are hard to define and articulate, but even pleasant ones can hurt, as the intensity can be overwhelming. That’s one reason why I crave stability in my life - change is a threat to the world as I understand it. Some changes are good, but loss, moving on, growing up, growing old, objects being moved, destroyed or missing - these are just some of the things that disturb my equilibrium. It sometimes takes me so long to process a change that you may be forgiven for thinking I’m feeling nothing at all.
I sometimes liken my brain to a laptop, which can have several screens open at once, bringing the ones I want to the forefront. The written word is my ‘special thing.’ It’s my most effective
way of communicating and understanding. I suppose I have synaesthesia, (my senses get mixed up) in that the written word has such a profound physical and visual effect on me. When people speak, I sometimes fail to grasp the meaning, but if I can ‘see’ the words, forming like they are being typed, rising up like a screen in front of me, I can follow what is being said more easily. Believe me, this is often exactly what happens when someone speaks. I do see the words appear like subtitles in the air. The best way I can explain it to you is to ask you if you have ever seen the BBC ‘Sherlock’ go into his ‘Mind Palace.’ For me, his quick-as-lightning projected thoughts illustrate exactly the way I see and experience the world, and the way words can affect me, creating silences, sounds, smells and emotions I sometimes can’t even begin to articulate verbally. If you haven’t watched Sherlock or The Good Doctor, who also has this kind of three-dimensional thought projection, the computer with several windows open is the best image I can come up with to enlighten you, but I run on a Mac operating system, not a Windows PC. I am digital, not analogue. I am super-fast fibre optic; I have never been dial-up.
I employed the memory very effectively at school, and not only to ace exams. I used to do a lot of acting, in fact I play roles every day, but that’s another story. My first major role was Alice in Wonderland, which, in hindsight, was a very apt part. Alice is the quintessential Aspie girl (nickname for a person with Asperger’s) – always asking questions, a dislike of injustice, no
sense of danger, precocious, perfectionist, always correcting others, a bit annoying… and Lewis Carroll’s visionary and surrealist writing captures my imaginative style perfectly. It’s 1982, and I can see myself sitting atop one of the desks, in my grey, plastic chair, because, having won the main part in the play, I was also given the ‘honour’ of being the life-model subject for the art class. This was, of course, excruciating. Not only had I already been singled out as ‘different’ due to my reading ability, my ‘posh’ voice, and some other intangible alien scent that I seemed to exude around my peer group, but they were jealous of my forthcoming starring role – and now they had to draw me! I ‘thought I was better than everyone else’ and my best friend at the time, who also auditioned, was generally
considered to be more suitable for the role due to her blonde hair. I just had to point out that Alice was originally dark haired! Only a few of the drawings were flattering. Teachers seem to be incredibly dim when it comes to the subtleties of playground politics. It was that night I asked my mum why I couldn’t just be ‘normal’ like everybody else? I made a vow NEVER to forget
what it was like to be a child. And with my kind of memory, that isn’t too difficult. Perhaps that is why, these days, I do teach and help children and young adults who are struggling with their confidence at school?
School can be a minefield for any child, particularly teenagers. But if you are autistic, there is an extra dimension to the terrain you have to negotiate in order to survive. Back to Rainman for a
moment. He can count cards; I can comprehend long written texts, their themes, structure, and language devices in minutes. I see words floating about in the air, forming into fully realised
essays faster than it most people take to finish reading the extract. Rainman flips out when things threaten his routine, and so do I. But Rainman is obviously autistic; he doesn’t communicate in the expected neurotypical way, so when he does something extraordinary and illustrates that he is, actually, clever, it is ‘amazing.’ When you have a high IQ and you can communicate well, (at least on the surface), people are surprised when you fail. And it is the failures that cling to you
like damp air. How can a three-year-old read fluently, (even the works of Dylan Thomas!), but believe, wholeheartedly, until the age of 20, that when the ice-cream van stops playing its music,
it means it’s run out of ice-cream? (Thanks again, dad!) How can you not know, at the age of 46, that being ‘Des,’ in certain social circumstances, means you are the ‘designated driver’? It’s still the subject of much mirth that, at the Christmas party, my husband asked our friend, whom we have known for over 20 years, if he was ‘Des,’ and I, helpfully I thought, trying to save his embarrassment, nudged and whispered the correction that, no, the friend’s name was Ian, ‘how can you have forgotten?’ I felt so proud that I had remembered his name, that I missed the giggles, and I was clouded with confusion for a full ten minutes! Suddenly, Raymond Babbitt’s seemingly implausible mis-understanding of the ‘Who’s on first base?’ joke is only a short step away. And who could forget my ‘have some coke, I mean cake’ offer, wrapped in silver foil, to
the parents of my son’s friend the first time I met them! If I still have communication and comprehension issues in adulthood, you can imagine my school experience, always slightly out
of step, never quite knowing who was friend and who was foe. Indeed, friends, for me, still fulfill particular ‘roles’ and ‘functions’ in the daily drama of my life, where I perform the starring role.
I spent most of my lunchtimes, with one friend, in the classroom of a sympathetic teacher, who somehow knew that negotiating the lunch hall was like being thrown to the hungry wolves. Many girls and women on the spectrum have written about their ‘masking’ and mimicking skills, and this was certainly true in my own case. I would copy others’ clothes, hair, speech and interests, like my existence depended on it. Imitation is often a form of flattery, but I can see, in hindsight, that it might sometimes be taken as mockery. I also realise, now, that at times I may have tried so hard to be someone else, that I became a sort of parody, losing sight of who I really was. If you constantly take on bits and pieces of others, then you become a collage of a person. I often got it wrong. Fads and fashions changed, and with this I became a chameleon, shifting with
time’s tide. I also sought refuge in characters from films, books and television, using their persona to layer my personality for the day, week, year. Here’s a secret: I still do.
Fast-forward to a grey and drizzly December day in 2018. I’m sitting in a brightly lit, tiny box of a room, fixated on a white envelope marked ‘feedback forms’ which has been sellotaped wonkily to the door. I’m jiggling my leg, anxiously awaiting the verdict on the past two hours and forty minutes. This diagnostic session has exhausted me, I’m feeling myself receding in the room, away from the person opposite me, and I am struggling to comprehend what he is saying anymore. A misty veil seems to have descended over my eyes as I can no longer quite focus.
This is simply the result of too much conversation. It’s hard to believe, when I am often so loquacious, but ‘people-ing’ and long periods of communication genuinely wear me out and two
hours definitely exceeds my limit. So, through this fogginess, I hear the words that I already know, but have been waiting for over a year to hear: the diagnosis ‘officially’ confirmed.
“You have a very classic female presentation and developmental history of Asperger’s Syndrome, now classified as an Autistic Spectrum Condition.” He didn’t say ‘disorder.’
The weirdest thing was, although I had been expecting it, part of me was incredibly anxious that, although another professional had suggested it, even written it down a couple of years before, the psychologist might get it wrong, might diagnose me with something else that didn’t ‘fit.’ Obviously, I had done my research and I was dismayed to discover that many women are mis-diagnosed several times before finally finding out their true autistic nature. I knew that Borderline Personality Disorder, bi-polar, or Pathological Demand Avoidance seemed not to be right for me, but, nevertheless, I was concerned that I ‘masked’ too well, and that, like a woman
from the 19th Century, I was about to be dismissed as ‘hysterical’, depressed and carted away! Worse, I was secretly worried that I was just weird. What if my brain was ‘normal’ after all and I was just useless at life? Despite my husband’s re-assurance that if I was just myself then no-one would ever accuse me of being ‘normal’, my anxiety levels were still sky high. Happily, the expert knew all about female autism. As he confirmed the diagnosis, I almost cried. I say ‘almost’ because, in my typical fashion, I quickly got that under control. Emotion? I’d rather run away than put that on display!
When he asked me how I felt about it, the first word I could think of was ‘vindicated.’ I chose that word because it supported what I’d believed, but what others had dismissed. Secondly, it offered a reason why so many things in my life had ‘gone wrong’ but I didn’t know why. It isn’t an excuse, but it is an explanation.
I wish I’d spent a longer time thanking him more profusely, but I was overwhelmed. He gave me a great gift, that grizzly morning in December. He gave me an identity, a sense of belonging
somewhere. The second word that flashed through my mind, to encapsulate my feelings on the day, was ‘empowered.’ This is the message I want to convey to all my students, those I mentor, those for whom I advocate, to anyone who will listen really. Neurodiversity is worth celebrating.
It doesn’t mean that you are broken and you don’t need to be fixed. The world needs you because, whatever challenges you have, however difficult you find it to remember what the
person next to you has just said, for every time you struggle to make your bed, get dressed or go shopping, there will be a time when someone will need your help, because you can do that
complex task more easily than they can. I’m not weird after all, I’m just different. Officially.
Well, ok, I am a bit weird, but that’s all part of my superpower.
Virginia graduated from Essex University with a degree in Literature, and later gained a postgraduate degree in teaching English. She taught for 15 years, then set up her tuition business, Results Tutoring, where she indulges her passion for literary analysis whilst helping her students to achieve their
potential. She is a passionate advocate for neuro-diversity, particularly as she is autistic herself, diagnosed at the age of 43. Alongside this, she writes poetry, articles and stories, making her publishing debut in The Weird and Whatnot, with her short story, The Rented Room. Following this, her poem, An
Afternoon Walk, was published in the September 2019 volume of Acumen Literary Journal. The written word creates a visceral sensation in Virginia; writing is her preferred method of emotional expression and stories often come to her in dreams. Her other obsessions are swimming and violin playing. Virginia
is married with one son.