by Laura James
Even today I enjoy reading a book much more second time around. A first read can be filled with apprehension. What if I don’t like the way the story goes? What if something awful happens to a favourite character? What if I get bored halfway through after I’ve invested something of myself in the story? A second read is a joy. I know exactly what is going to happen, so can immerse myself in the words and the subtleties in a way that would have been too stressful the first time.
A good book can stop my head whirling. It can take me to another world, one where the fear can somehow magically be kept at bay. Books are my greatest pleasure. When the world is too loud, chaotic or confusing for my brain to process, I will go to bed with a book I read when I was a small girl and am still able, at times, to lose myself in the printed text.
Childhood is often a hugely difficult time for autistic people. The rules can be confusing and make little sense. Not being able to choose the clothes you are to wear can be enough to provoke a meltdown. When I was around three I had two identical fun fur jackets. One was yellow, the other blue. My mother talks of how I would happily wear the yellow one, but not the blue.
I can still see myself standing in front of my mother as she takes the blue coat from the cupboard. I am defiant, immovable. She bends down and takes my arm to put it in the sleeve. I begin to scream. I feel itchy and angry. I will not wear this coat. I breathe in and then do not exhale. My mother’s expression moves from angry to concerned. My lungs begin to hurt. My mother is talking to me. I see her lips moving, but cannot hear her words. I am silent. My body stiffens. My lips are tinged with blue. I fall to the floor and lose consciousness.
This happened often during my childhood. My parents were told such episodes were merely tantrums and that they should not give in to them. Three of my own children – particularly Toby – suffered when they were young from reflex anoxic seizures. These are spontaneously reversing short episodes of asystole (heart standstill) triggered by pain, fear or anxiety caused by increased responsiveness of the vagas nerve at the base of the neck. They are utterly terrifying to watch. A child in the grip of one of these seizures will breathe in to cry and not breathe out. They will fall to the ground, stiffen and jerk. It looks and feels as if they will die, but in a matter of moments they are conscious again, often with no memory of what has just happened.
I don’t know whether the behaviour I displayed as a child was a seizure that went unrecognized or if our portly, scary GP was correct and I was simply ‘engaged in a battle of wills’ with my parents.
I cannot imagine I was an easy child. I know I was strange. Grown-ups often talked about me in hushed tones, in a way they didn’t seem to about my cousins, classmates or the children of my parents’ friends.
It’s because she’s adopted is a phrase I often heard. Also, She’s spoilt. And, She’s good at getting her own way, that one. Finally, Maybe she’s a bit simple. I only heard this one a few times, but I rather liked it. Simple seemed to me a nice word. It sounded clean and unscratchy.
There were many things said about me, most of which I didn’t understand. This irritated me a lot. Not because I cared what people thought. I didn’t, but to this day I find it vexing when I can’t grasp a concept.
Throughout my entire childhood, however, I never once heard the word autism. I don’t think my parents or their friends had even heard of the condition, let alone had any understanding of how it related to my odd and eccentric behaviour. It wasn’t until the 1988 release of Rain Man that autism made its way into the public consciousness. This is somewhat ironic, as the character Raymond Babbitt is based on a man called Kim Peek, who, like Raymond, was a savant, but instead of autism he had FG syndrome, a rare genetic condition.
My own behaviour – the fact I avoided other children, didn’t play with toys in the usual way, spoke in a manner well ahead of my years and always had my head in a book – was explained away by the fact I was adopted and was being raised as an only child. Or because I was unhappy due to my adoptive mother suffering from many bouts of ill health and often being hospitalized for long periods.
In north-west London in the 1970s it was seen as important to conform, to behave just like everyone else. I tried so hard to do this – by copying the other girls of my age – but more often than not I failed. I had no idea how to think and feel like everyone else, so instead I tried to look like them, dress like them and – weirdly important to my seven-year-old self – to acquire similar possessions to those they owned. Snoopy was very popular and I liked this because I wanted a dog of my own. Tiny Tears dolls were also fashionable, but they left me cold.
During the long hot summer of 1976, while the country talked of nothing but hosepipe bans, inch-deep baths and how the gardens were suffering, I was obsessing about Ballerina Sindy. I didn’t really know why I wanted one, just that everyone who had one seemed happy. Eventually, after much nagging on my part, I became the proud owner of a Sindy doll. I literally had no idea what to do with her. After I had changed her outfit a few times from the carefully arranged lines of matching skirts, dresses and tops, she was relegated to the back of my toy cupboard.
I carefully picked the people I would copy. At school, there was a girl a few years above me. She had long blonde hair that flicked just like Farrah Fawcett’s and an air of confidence that seemed to shroud her in a golden light. I found her fascinating. I wanted to know everything about her. I watched her from afar. I don’t think she even noticed me. I desperately wanted to know her name.
On the last day of term, when we were allowed to trade our strictly imposed school uniform for home clothes, she came in dressed in cropped jeans, a white Fruit of the Loom T-shirt and a pair of Dunlop Green Flash tennis shoes, on which she’d written ‘Elvis’ in felt-tip pen. From that moment on she was immortalized in my mind as the Elvis Girl.
She left that term, but for many years when I found myself in a difficult or emotionally draining situation I would consider what the Elvis Girl would do. When school became too much and the older girls screamed insults across the playground, or when I was alone in a room with a boy and knew he was about to kiss me, I would imagine I was her and do what I calculated she would have done. It often worked in calming my fears. I may not have been able to get my hair to flick in the way she did, but I could adopt her inscrutable expression, and power through the pain.
Copying neurotypical behaviour is an exceptionally strong coping mechanism in most autistic girls. Unlike boys with autism, who are often happy to strike out on their own and just be themselves, girls tend to have a strong need to fit in. Mimicking the behaviour, style of speech, interests and social interactions of others provides something akin to a blueprint for life. While neurotypical girls have an innate understanding of how to behave, autistic girls tend to have to learn these behaviours by studying how others do them.
In an effort to add detail to my blueprint for life, I have begun contacting a number of autism experts, including Professor Tony Attwood, author of The Complete Guide to Asperger’s Syndrome.
He stressed that with autism the core features are generally the same for boys and girls, men and women. There are, however, key differences. He told me: ‘One is how girls react to being different. The other is the different expectations in society for girls. In terms of how girls react, I think one of the common ways is to observe, analyse and imitate and create a mask, which delays diagnosis for decades until the wheels fall off.
‘What the girl will say is, I don’t get it. I don’t understand it, but I will observe it. I will look for patterns. ASD is a study of patterns. That’s why someone with ASD may be so good at maths. Often in ASD you are searching for the patterns of life – looking for patterns in interactions and then analysing them, imitating them and faking them.
‘This often means that a teacher, for example, doesn’t see the problem because often the girl is a goody-two-shoes at school; she suppresses it until she gets home, where she can be a very different character. What I call “Jekyll
and Hyde”. Still, she may escape into her imagination, so she is diagnosed with Attention Deficit Disorder.
‘But it’s often more of an issue in the secondary school years, when socializing is more complicated. Girls can be more bitchy and mean, and Aspie girls don’t play that game. They are loyal, trustworthy and kind. They just don’t do bitchiness and they find it very hard to understand why girls would actually enjoy being so cruel to each other and so destructive. How could this person be so cruel and vicious to me and then, thirty seconds later, be absolutely nice as pie to someone else? If they were vicious to everyone all the time, you’d get that.
‘The other thing is that girls are often expected to be touchy-feely, affectionate, very much engaged in talking about feelings and things like that. So there is a higher expectation of social engagement and empathy.’ These expectations can be difficult for girls with ASD.
I was aware from a very young age that not only did I behave differently from the others, but I also thought differently. I read the dictionary for fun and collected words to drop into sentences. I might choose polemic as my word of the day and use it as often as I could – unnecessarily, but always in precisely the correct way.
Though I found it physically and mentally exhausting, I think I tried hard to fit in. More often, though, I would create imaginary worlds in my head and would sit still for hours coming up with the rules for this parallel universe. In this new world in my head, the opinions of adults were no more important than those of a child. Mealtimes were optional. Everyone would wear the same clothes every day and they would be made from soft grey fabric that felt good against the skin, not itchy, scratchy or harsh. At school, you could choose what to do. If you didn’t like art or PE, you could read instead. Every day the library was stocked with new books. No one shouted or raised their voices. If you ever broke a rule a proper grown-up explained why it was a rule and why it mattered and then you were simply told – kindly – not to do it again.
For years I genuinely believed most of my problems stemmed from the fact I was adopted as an infant and therefore didn’t fit in with my new family. In my early twenties I set out to track down my biological mother. I had heard from other adopted people that the process might take years and be a complicated one of considerable forensic detective work. I was rather looking forward to this. I wanted to have a project to occupy my mind, a new obsession. I set about it with typical hyper-focus. It worked. Rather than the work of months or even years, I tracked her down within three hours of being given my birth certificate.
In the UK, those adopted before 1975 must consent to counselling before they are allowed to access any information relating to their adoption. This was frustrating in the extreme; my nature is to want immediate results, but I was forced to agree.
Eventually, on a sunny day in May when I was around twenty-five, I set out to meet Myra, a social worker from Westminster Council. I prepared for the meeting in my usual way. I imagined what the building would be like and telephoned reception to find out whether there was a lift, explaining I would not be able to use it and would need to take the stairs. I studied a map to see how long it would take to get there. By bus from Notting Hill to Paddington would take no more than twenty-five minutes. I allowed myself two hours.
Strangely, in adulthood I have never suffered from social anxiety. As long as I am allowed to be myself, I’m OK. School was forced socialization and they wanted me to fit a mould in the quest for homogeneity. Now, I don’t care what others think of me.
If that is part of my autism then I am grateful; it has allowed me to function successfully as an adult. I do need to ensure I am not uncomfortable with the practicalities of life – such as being forced to get on the Tube or into a lift – but strangely I can cope easily with many things others might find daunting or scary. My work, for example, calls for me to interview many household names – actors, authors, celebrity chefs and models, amongst others. Perversely, I do this as easily as others might do the weekly shop. Equally perversely, I do not know how to do a successful weekly shop.
The meeting with Myra, however, didn’t go quite how I had imagined it. It took place in a soulless room in a drab council building. We sat opposite each other on plastic chairs, a grey Formica table between us. She looked tired and defeated. I had imagined the counselling would be in-depth, that my suitability would be assessed. Was I fit to be given access to the required information? I thought I would be asked questions about my mental health, why I wanted to trace my family and how I would cope.
‘You do know that not all parents want to be found, don’t you?’ Myra said, a brown file of papers resting on her lap.
‘Of course. I’m prepared for that,’ I replied, wondering if it were true.
‘OK, well if you’re sure, here’s your file. You can’t take it, but you can have photocopies of anything you want. They’re fifty pence each.’
That was it. She then left me alone in the room for fifteen minutes. I opened the file and came face to face with my past.
My adoptive parents had been advised to explain to me very early on how I came to be with them. They made it into a story and, as I grew up, it became just a fact, something that made me slightly different from other children, but not something loaded with emotion. I didn’t feel the sharp sting of rejection other adopted people talk about. I don’t think it damaged me in any way.
For as long as I can remember I’d had a list of facts about my adoption. Facts make for comfort. My natural mother’s name was Marina. I had originally been called Samantha. I had some siblings, although no one knew how many or whether they were boys or girls. I knew that my mother had been on the stage, a phrase which now seems hilariously outdated. I knew I was born in London, at St Mary’s Hospital in Paddington, and that my mother had been unmarried. This last fact made grown-ups wince a little, as if it somehow diminished me. I could never quite work out why.
New information jumped out at me. Marina had been married long before she had me, to an American wallpaper designer. She had lived with him in New York. She had four children with her husband. Boys. She had come back to England alone, leaving her husband and children behind. She had been in her early thirties when she had me. I had imagined her as a teenage mother.
There were letters from Marina to the adoption agency, so I got to see her handwriting for the first time. It was round and neat; not at all like mine. She explained a little about her life, both in relation to my adoption but also adding what she described as background information. Some of it was surprising. While I had imagined her stage career had been as an actress, I was intrigued to learn that she had, in fact, been an underwater ballerina with a show that toured the country. From the descriptions in one of the letters, it would seem as if she had at some point danced in a tank with crocodiles.
I also discovered that I had been born Catholic. This surprised me; my original religion was something never discussed at home. My adoptive parents were Jewish, so perhaps this mixture of genetics and environment contributed to my extraordinary ability to hang on to guilt.
Jewish north-west London was a tiny place in the 1970s. It wasn’t just that everyone knew everyone; it was that everyone knew what everyone else was doing. Where they were going, whom they were seeing, what arguments or romances had broken out. Who was dieting, who was putting on weight. Whose marriage was going through a rough patch. In fact, pretty much everything up to and including exactly what everyone else was thinking.
Almost everything was also done in a group. My parents worried that I, as an only child, would be lonely, so friends and cousins were rolled out at every opportunity. I have two sets of cousins: Alison and Karen, who are five and ten years older than me respectively, and Jacqui and Paul. She is two years older and he two years younger than me. I adored my female cousins. Paul less so; he was noisy and threw things.
I didn’t connect in the way I now know others do. I was clingy and followed the girls around. Being older, they had their own concer
ns and their own secrets. I remember clearly sitting on Alison’s bed while she and Karen talked in code over my head. Fingers tracing the pattern on the pale yellow candlewick bedspread, I tried to work out what the encrypted conversation meant. I knew beyond doubt it was exciting.
These days we think we live in a world where information is exchanged immediately, but nothing today goes viral as quickly as a drama that happened back then, in a world before mobile phones. One mistake or slip-up and you felt the eyes of an entire community boring into you.
Our mothers seemed to have a sixth sense that allowed them to see into our heads and pluck out information that told them if we had misbehaved. It was a close community. It was loud, passionate and full of crisis and hyperbole. I found it utterly overwhelming. My need for space and calm was completely at odds with a world where people could turn anything into an argument. They seemed to feel slighted by the strangest of things. Receiving news second-hand, for example, was a no-no and met with the kind of reaction more worthy of a punch in the face.
Try as I might, I couldn’t understand the emotional outpourings or the absence of logic or perspective. Now, with the benefit of age and experience, I can see there was nothing inherently worrying in these displays of emotion, but at the time they were confusing, bewildering and unnerving.
Jewish life in the 1970s did have one thing that worked for me: routine. Friday nights in particular. I liked the clockwork nature of Shabbat eve. As the sun went down my mother would light two candles and say a prayer. It was a calming ritual and one I looked forward to throughout the week.
Friday night supper was always the same in every Jewish house I visited. Chicken soup with noodles and strange half-formed eggs, and dumplings made from matzos. Roast chicken followed, with potatoes and vegetables. Challah, a sweet-tasting bread made with egg, would be blessed and eaten with a little salt, and then thick, sweet red wine – usually Palwin No. 10 – had its turn to be prayed over before we were all allowed to take a small sip. From my earliest years my definition of a sip was questionable.