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 – Beatle haircut, round rimmed glasses like John Lennon – oh, he’s so young – he’s offering her a sausage roll. The girl’s large eyes widen further; they look dismayed. 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 part where you need to watch closely. Her mouth is fixed and smiling, but the eyes are not. 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 to her, 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 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 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 make her feel 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 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 disappoint her dad, trying not to let the sound of the laughter rise up in brittle metallic shards 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, cringing need to hide, whilst feeling like a rabbit frozen in headlights. She has to be taken out of the room. 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 at a large firm. 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. 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, loving 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 ‘refridgerator 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 sausage rolls again until I was 24. The reason? My dad had teased me by saying the brown crusty bits on the end were stained by tea. 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 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. Being a teenager on the spectrum is particularly challenging and I now understand what made it so hard for me. 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. In the 1980’s, most people’s understanding of autism was from watching the film, Rainman. I cannot deny that even at the time, I felt a sense of empathy with him. 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 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 linger the most. 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, that was my Dad again. And 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 and strange looks. Apparently, ‘Des’ means ‘designated driver.’ Who knew? 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 fulfil particular ‘roles’ and ‘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, 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.
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 the school 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 naturally they were jealous of my forthcoming starring role – and now they had to draw me! There were so many snide comments – 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 in the books. Nobody likes a know-all. Only a few of the drawings were flattering. That night I asked my mum why I couldn’t just be ‘normal’ like everybody else? Perhaps that is why, these days, I am successful in teaching and helping children and young adults who are struggling with their confidence at school?
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, you may even have seen The Accountant. But have you noticed something? All of these media characters are men with super savant skills. We are only just beginning to uncover the way autism presents in women, and women are having a harder time getting diagnosed. 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. But I also confound many of the long-held stereotypes. 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. To totally debunk all of the myths, I’m rubbish at maths as well because my special skill is with words. But 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.
I also struggle to foresee danger. It is this trusting nature which has been the most harmful to me in my adult relationships. I failed to distinguish between love in films and love and real life. This is true of many young people, but it lasted a lot longer in my case. There was danger in having a slower emotional development. Aged 24, it had been a heady summer, and I had embarked on love-by-commute, pretending to be the modern woman in a long-distance relationship. It extended what perhaps should have stayed as just one Summer.
There were other loves that followed, other disappointments and mistakes. I married, and I had a child, who has grown up to be a fine man. I persevered with that marriage, which lasted for 10 years, long after it should have ended, desperate not to fail. However, because I was afraid of failure, and afflicted by my childlike belief in everyone’s innate goodness, I actually failed to notice him having a 4 year long affair. I failed to notice a lot. I definitely failed to anticipate the 2 years of hell I would be put through when we divorced. 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. But starting again provided me with the chance to realise that my long-term best friend was exactly the right man for me to marry. He was right there in front of me all the time. Being autistic, I have learned, may have given me the ability to observe the fine details; to notice things that others 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 autistic style of communication, or a lack of understanding of their communication. I cannot bear injustice, and I still, to this day, appear to be a maverick, or irreverent, simply because I have no comprehension of the 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. I do extend my apologies to the woman who did not know George Eliot was a woman. I wasn’t laughing at you. I was simply answering your question. But to the social worker who called me rude, who was always so insistent on being ‘pacific’? No, I don’t apologise to you. There’s an OCEAN of difference…
However, I am honest, I am loyal and I never waste time or miss an important detail. Those can be incredibly positive traits, in the right job. This is something I have learned as I have grown older. It is important for autistic people to learn to sell their positive assets and incredible talents. A sad statistic is that only 21.7 % of autistic people are in full time employment. But they have so much to offer the workplace. 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 terrible migraines due to smells, noise, the lighting, or patterns on the wallpaper. Then imagine this triggers you to have a meltdown. For those of you unfamiliar with that terminology, a meltdown is caused by a sensory overload in many cases. It is unpleasant and it is exhausting to experience, and it can be triggered by something seemingly innocuous. But from the outside it looks like a 2 year old’s toddler tantrum. This is not a good look for an adult. But all autistic people have meltdowns in their lives. Many manage to keep them private, hidden from their families and colleagues. This is what is meant by ‘high functioning autism’ – in my opinion it means that the autistic person is less of a nuisance to other people, not that they are coping well. Believe me, most autistic people are struggling to function in an ordinary way, even if they are like me and have a busy working and family life.
This is why I am now convinced that self-employment is a good way forward for autistic people. Since I became self-employed in 2013, I have never been happier at work. It was a leap of faith, starting my own business, but one which paid off and not just financially. I look forward to every day, and I have had time to achieve things that I thought were merely pipe dreams. I am a tutor, helping others to achieve their goals. Even during the pandemic, I was able to switch all my work online using skype or zoom, and for many students it has stayed that way due to the convenience. I confess I enjoyed being able to go to work in my pyjamas if I felt inclined. Also, I have found more time for myself and my family. Instead of constant marking or pointless paperwork, I am now able to act professionally again, and I have written for theatre. Furthermore, I have had a book of stories and a poetry collection published and been broadcast on BBC radio. In short, I use the skills and talents my autism has gifted me with, and I make them work for myself and for others.
It was around about the age of 43, that things began to change. I teach students English, many of whom are on the autistic spectrum. I began to notice that some of them were very much like me and I did some extensive research on the subject. The more I learned, the more I became convinced that I too might be on the spectrum. My husband also agreed with me and was very supportive about my desire to find out some answers. I didn’t want to use it as an excuse for any negative thing that had happened to me, but it may offer an explanation. 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 can still see myself 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 told the psychologist all about my past, how I sometimes felt like an alien plonked onto the earth. How I found relationships and other people quite mystifying at times. I told him all about my eidetic memory and he listened to it all very patiently as I explained how 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, and how even now 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; I can feel the cold window-pane on my tongue as I licked it and pressed my face against it. This sort of recall can be really useful, especially in my work, where I am able to memorise huge chunks of text and page references. However, as I explained to the psychologist, 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 memories of that Christmas party from earlier, and the scars from all my failures still burn as deeply as all of the successes I have had still shine brightly. Memories still give me the same feelings as I had then, and, even now, I cannot articulate exactly what the emotions were, or why I had them. I imagine all my experiences as little boxes, hanging from an enormous 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. I will always find it difficult to move on, as the experience always feels brand new.
I’m remember jiggling my leg, anxiously awaiting the verdict on the past two hours and forty minutes. The diagnostic session exhausted me, I remember feeling myself receding in the room, away from the person opposite me, and struggling to comprehend what was said. A misty veil seemed to have descended. This is simply the result of too much conversation. It’s hard to believe, when I am often so loquacious, but talking to people and long periods of communication genuinely wear me out and two hours definitely exceeds my limit. But, through this fogginess, I heard the words that I already knew, but had 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,” the clinical psychologist told me. I noted that he didn’t use the word ‘disorder.’
The weirdest thing was, although I had been expecting it, part of me was incredibly anxious that 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, that I was well-practised in appearing to be just like everyone else, 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 ‘ordinary’, my anxiety levels were still sky high. Happily, the expert knew all about female autism, and the way it presents itself. He knew that women are more skilled socially than their male counterparts, but if you put them beside a neurotypical female, they are noticeably different and have obvious struggles. Thankfully, he also realised that although many boys with autism fit the stereotype of loving trains, females with autism often fit the profile of other little girls when young. However, if you look more closely, their interests in books, horses or Harry Potter often extend beyond the usual girlish fascination or fandom into an overwhelming obsession. Us autistic girls don’t just have an interest, we love our chosen subject with a passion and we accumulate a knowledge that would secure us a spot on Mastermind. 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 in public!
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. I didn’t look autistic, they said, didn’t act the part. I felt overwhelming relief to have it confirmed at last. To me 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; it explains me, finally, to myself. I wish I’d spent a longer time thanking this man 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.’
Since I have been ‘re-born’ as an autistic person, I have begun to relax more. I have realised that for every negative experience, every perceived failure, I have had many more successes. I would not be without my autism, it is part of me. I am not a ‘person with autism’, as it cannot be removed, like a cumbersome coat. I am autistic. I know who I am now, and I am proud to be me, with the mask off. This is the message I now try 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. I was gifted with a unique brain which has given me some unique gifts, and in turn that is my gift to you.