In this episode we hear a wonderful non fiction piece by Virginia Betts. She explores her lived experience as an autistic woman, her diagnostic journey and ways that her neurodiversity allows her to explore the world in unique and interesting ways.
Virginia's website: https://virginiabetts.com/
Hello and Welcome to ‘Scintillating stories.’ In this show we read short stories by a variety of authors.
Virginia Betts is a tutor, writer and actress from Ipswich, Suffolk. She runs Results Tutoring, and specialises in Neurodiverse learning styles, being neurodiverse herself. During the lockdown, she had poems, stories and articles published in literary journals, won prizes / and published a story collection, The Camera Obscure, and Tourist to the Sun, a collection of poetry. She is a regular guest on BBC radio and she is also a professional actor and performer. She formed The Dead Poets Theatre company, has played Kate Bush and she has just played Mary Boleyn and Elizabeth Barton in The Rise and Fall of Thomas Wolsey, by Suzanne Hawkes, with Black and White Productions. She is currently writing her next books.
By Virginia Betts
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 dressed with ribbons for the occasion. Look at her dad - he’s offering her a chocolate cookie. The girl’s large eyes widen further; she pushes it away. He leads her by the hand to the big room, where the other children are watching Punch and Judy.
Now watch closely. Her mouth is fixed and smiling, but the eyes are not. It’s fleeting to the casual observer; hidden in plain sight. Inside, she’s becoming distressed and she doesn’t know why. The other children like the show but to her, it isn’t funny. Inside, she feels several things: the most horrific, cringing embarrassment. She feels conspicuous; just as if she were lit up brightly, 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 her dad with her. The only one who isn’t 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 make her feel sick.
To her, the show is sinister, she sees beyond the puppets; Mr Punch horrifies her. 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 patronised by this show. Can’t they see she’s not an ordinary, silly 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 collectively. 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 let the sound of the laughter rise up in brittle shards that hurt her brain, she is trying not to cry. She swallows the scream and rising panic. She knows it’s not real, that it’s supposed to be fun but she cannot find the words. How does a child of five explain so many sensations assaulting her? 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, painful, cringing need to hide. She has to go home.
It’s a 1976 Christmas party. The little girl 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. If 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 connection to their families. It was so ‘terrible’ and there was no ‘cure.’ When I was young, it was generally accepted that girls weren’t autistic. Autism was something that affected boys. One reason for this was that much of the research during the 40’s and 50’s was carried out on boys – Hans Asperger’s ‘little professors’ for instance. Furthermore, Kanner’s early definitions put the blame for autism on the part of the cold and unfeeling ‘refrigerator mother.’ Unable to love her child properly, Kanner suggested that this mother caused her child’s autism. Sexist assumptions like this led to a great deal of guilt and misunderstanding which was still rife in the 1970’s. After that aforementioned Christmas party, I didn’t eat chocolate cookies again until I was 24. The reason? My dad said I could dunk them in a cup of tea. I hated tea. I still don’t drink tea; the overpowering smell makes me feel sick. I still don’t eat jelly with ice-cream. I’d like to tell you that attitudes towards autism 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.
In that wonderful thing called hindsight, I can see how so many of my past mistakes and some of the traumas I have suffered can be linked to the fact that I am an autistic woman. 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. I cannot deny that I felt a sense of empathy with Rainman. 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 takes most people 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, it is ‘amazing.’ When you are clever, and you can communicate well (at least on the surface) people are surprised when you fail. And it is the failures that linger. How can a three-year-old read fluently, 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? (Yes, my Dad again!)
It’s still the subject of much mirth that, at our Christmas party only a few years ago, when my husband asked our friend whom we have known for over 20 years, if he was ‘Des,’ I helpfully whispered the correction that, no, the friend’s name was Ian. I felt so proud that I had remembered his name, that I missed the giggles. Apparently, ‘Des’ means ‘designated driver.’ Who knew? If I still have communication and comprehension issues, 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 fulfil particular ‘functions’ in the daily drama of my life, where I perform the starring role.
I spent most of my lunchtimes at school, with one friend, in the classroom of a sympathetic teacher, who knew that negotiating the lunch hall was like being thrown to the wolves. Many girls and women on the spectrum have written about their ‘masking’ and mimicking skills. 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 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 collage, losing sight of who I really was. I often got it wrong. I became a chameleon. I also sought refuge in characters from films, books and television, using their persona to layer my personality. Here’s a secret: I still do.
Some teachers seem to be incredibly dim when it comes to the subtleties of playground politics. I can see myself in 1982, sitting atop one of the classroom desks, because, having won the lead part in Alice in Wonderland, I was given the honour of being the model for the art class. This was 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, but naturally they were jealous of my forthcoming starring role – and now they had to draw me! I ‘thought I was better than everyone else’ and ‘Alice is blonde’. I just had to point out that Alice was originally dark haired in the books. Nobody likes a know-all. Why couldn't I just be ‘normal’? Perhaps that’s why, these days, I am successful helping students who are struggling with their confidence at school.
Attitudes are more understanding now, and reading memoirs by autistic adults has helped me to find insight. However, I have been told many times that I ‘don’t look autistic’ according to the picture many neurotypical (non-autistic) people imagine, like The Good Doctor; Rain Man or The Accountant. But all of these media characters are men with super savant skills. Autism presents differently in women, and women are having a harder time getting diagnosed. I do have some savant skills, but I recognise that many don’t. However, I have yet to meet a person on the spectrum who isn’t singularly remarkable at something. I confounded many of the long-held stereotypes. I run my own business, I am very articulate, I am married with a child and, to debunk all of the myths, I’m rubbish at maths! Girls are expected to be proficient socially, so their traits are often well hidden. Yet autism comes in so many nuanced shades that it would be impossible to define one experience as being exactly like another.
I also struggle to foresee danger. It is this trusting nature which has been the most harmful to me in my adult relationships. But don’t ever be fooled into believing that those with autism lack empathy, or are cold and unfeeling – some of the difficulties we experience are caused by feeling too intensely – emotions are hard to define and articulate, but even pleasant ones can hurt. The intensity can be overwhelming. That’s one reason why I crave stability - 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 or missing - these 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. Being autistic has given me the ability to observe the fine details; to notice things that others don’t see, but it also means that sometimes I completely miss the blindingly obvious.
Another area where my autism has landed me in trouble is the world of work. In my youth, I also did a variety of temporary jobs and in most of them I experienced some sort of falling out with either my colleagues or the management, which I am now convinced was due to my style of communication. I cannot bear injustice, and can appear to be a maverick, or irreverent because I have no comprehension of accepted hierarchies in the workplace. I have the dubious accolade, from one figure-of-authority, of being ‘the rudest person’ they have encountered in ‘thirty years.’
But I am not rude. I concede I am, perhaps, blunt.
I don’t suffer fools, but at the same time I am not unkind. There is a very big difference between a genuine lack of knowledge and willingness to learn, and deliberate, wilful stupidity.
However, I am honest, I am loyal and I never waste time. Those can be incredibly positive traits, in the right job. A sad statistic is that only 21.7 % of autistic people are in full time employment. In these days of ‘reasonable adjustments,’ I still feel that many workplaces are failing to understand exactly what that means. The biggest impediment to working when you are autistic is stress caused by the environment. As well as having to deal with colleagues who do not understand you, sensory processing problems go hand in hand with autism. Imagine your environment causing you to have a ‘meltdown’ caused by a sensory overload. It is unpleasant and exhausting to experience, but from the outside it looks like a toddler tantrum. Not a good look for an adult. We may keep them hidden from families and colleagues, but in my opinion ‘High-Functioning’ means that the autistic person is less of a nuisance to other people. Most autistic people are struggling, even if it’s hidden. I am convinced that self-employment is ideal for autistic people. Since I became self-employed, I have never been happier at work. I tutor, act, and I have written two books. I use my skills and talents.
It was in my forties that things began to change. I noticed that some students were very much like me and I did some research. I never felt like other people, and I wanted to know if there was a reason why. And so it was that I began my year-long diagnostic journey which culminated on a grey and drizzly December day in 2018.
I told the psychologist all about my past, how I sometimes felt like an alien plonked onto the earth. He listened as I explained how I can recall almost every day in vivid detail, right back to lying in my pram, playing with the yellow pram rattles which bounced above me on a piece of wobbling elastic. This recall, useful in my work, carries with it the unfortunate side-effect of being able to reproduce every feeling as if it were the day it happened. Memories and scars still burn as deeply, as successes still shine brightly.
I remember jiggling my leg, anxiously awaiting the verdict. The diagnostic session exhausted me, but through the fogginess, I heard the words that I already knew: the diagnosis ‘officially’ confirmed. He didn’t use the word ‘disorder.’
I was anxious that the psychologist might get it wrong. I was dismayed to discover that many women are mis-diagnosed several times before finally finding out their true autistic nature. 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! What if my brain was ‘normal’ after all and I was just useless at life? Happily, the expert knew all about female autism, and the way it presents itself. We often fit the profile of other little girls. But interests in horses or Harry Potter extend beyond fandom. We love our chosen subject with a knowledge that would secure us a spot on Mastermind. As he confirmed it, I almost cried. I say ‘almost’ because I quickly got that under control. Emotion? I’d rather run away than put that on display in public!
I would not be me without autism. I am not a ‘person with autism’, as it cannot be removed, like a cumbersome coat. I am autistic. I know who I am. I’m not broken and needing to be fixed. I’m not weird after all. I’m just different. I was gifted with a unique brain which has given me unique gifts, and that is my gift to you.
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