For women with autism our capacity and interest in conformity is diminished – we are no friend to the patriarchy.
Nicola Clark, ‘I Was Diagnosed with Autism in My 40s’, Guardian, 30 August 2016
Even now girls are under-diagnosed in this area because they are more adept at adjusting their behaviour, able to observe and mimic social interactions. This means ASD symptoms in females may be masked and go undetected. As Sarah Hendrickx, a writer who received a late diagnosis of ASD, remarked in the Guardian in 2015, ‘Research is now catching up and revealing that girls and women can present a different autistic profile and this is why they continue to be missed.’‡
I think my whole family was on the ASD spectrum. My mother and father both had extreme and unusual personalities (plus my father was an engineer, a classic ASD profession – along with mathematician – before computer programmers). ASD types are often attracted to each other; this is called ‘assortative mating’, and it has been suggested that the recent increase in numbers of autistic children in Silicon Valley is due to this phenomenon.§ Assortative mating probably drew my parents to each other, and also explains why I’m interested in unconventional women and men.
I had some peculiar traits when I was young. I couldn’t leave the house if there was a wrinkle in my sock and wouldn’t finish eating if a fly buzzed past. I was so easily distracted that Mum had to lock down a room and remove all stimuli to get me to finish my food. I also had a tendency towards obsessiveness (clothes, music, boys, smells, colours) and an exaggerated response to stress. I’d panic if I lost a hairbrush. If I misplaced something I felt my world was out of balance. I had diarrhoea every day on the way to school due to nervousness, right up to the age of seventeen. I was also extremely aware of the emotional undercurrents between members of my family, and later on, between everyone I encountered. (I can also be the complete opposite – clumsy and missing the point by miles.) I experienced my life as if I was on drugs, paranoid, watchful, every emotion exaggerated and magnified. That’s how I’ve felt every day from as far back as I can remember.
* www.templegrandin.com
† You can now buy weighted blankets for children with ASD and ADHD
‡ Sarah Hendrickx provides training on ASD: www.asperger-training.com
§ Steve Silberman, Neurotribes – the Legacy of Autism, 2015
23 Mia was shocked that Pascale wouldn’t move away from the bed. I wasn’t. ‘You can come round this side and do it,’ I said, trying to sound normal. I desperately wanted Mum’s death to be normal. I was embarrassed about Pascale’s behaviour. Here’s my mad, bad family rearing its ugly head again. I tried to keep the mood light because it was more important to me than anything that, if Mum did go that night, Vida’s memory of the whole thing would be bearable. Mum and I had worked hard over the past five years to make her impending death acceptable to Vida, not something to fear or be hidden away and not spoken about. We’d done our best to prepare her and I didn’t want Pascale ruining it. Mia tried again. ‘It’s much easier for me to reach your Mum from this side, where the plug is.’ Pascale ignored her. Mia’s shoulders hunched up to her ears as she trundled the machine around to the other side of the bed and used a plug by the door. Vida and I shuffled out of her way. The wires were stretched so tight the equipment only just reached Mum’s mouth.
Grey Garden*
In the early years, when we lived at Frieda’s house, Pascale and I were allies. We’d spend hours together drawing or making pop-up books. We’d build dens in Nanny’s garden until it got dark, then Mum would notice we were missing and call us in. We giggled about nothing for hours under our father’s outdoor workbench while it rained, again until Mum noticed, told us off and dragged us inside. We lived in our imaginations as we had very little stimulus at home: no books, no visitors, hardly any friends. Once we dared ourselves to kiss each other on the lips to see what all the fuss was about, but sprang apart in horror as soon as our mouths touched. I can still remember that feeling of soft smooth skin on soft smooth skin. It was horrible, like kissing myself.
Pascale was nine and I was eleven when we moved out of Frieda’s and into our own house in Muswell Hill. That’s when our arguments became more frequent and more physical (punching and general hitting). I found her more irritating and annoying than before, but we still protected each other’s secrets and covered for each other when we were in trouble.
Four years after moving to Muswell Hill my parents separated and Mum, Pascale and I moved into the council house next to Hornsey Gas Holder No. 1. That’s when Pascale did something I thought was strange: she stopped confiding in Mum and me. She’d met this new group of friends, boys and girls from outside school. The main boy was older than me and had long dark-brown hair and a moustache like Mickey Finn, the drummer from Tyrannosaurus Rex. I was jealous when he gave her a big brown toy rabbit with a purple velvet jacket for her birthday. I understood that she didn’t want to share her new friends with me – I’d nicked some off her once before – but I was upset for Mum because up until then she and Pascale had been so close. Mum worked hard: five days and two evenings a week as a librarian and a third evening as a cleaner to make sure we had new clothes and didn’t look poor. She had no life. I felt we at least owed her our confidences. She also stayed up late every night studying to pass her library exams so she could move up a grade and earn more money. The head of her library in Crouch End said she was too old to go in for the exams at forty-nine. When she passed with credit he sent her paper back to the examining board and told them to double-check it.
Mum did everything she could to make sure our lives and our appearance were not too affected by our lack of money. Her holey, greying knickers with fraying waistbands pegged to the washing line in the garden every Saturday morning were testament to that. I was ashamed of myself every time I looked at those knickers. We always had new ones, and new socks and shoes. Pascale and I looked immaculate. Our petticoats and shirt-waisted dresses were starched by hand so the skirts stood out from our knees, not too stiff, not too lank, with just the right amount of ‘bell’, skinny legs protruding from the crisp hem like spindly pink stamens dangling from a fuchsia bud.
Despite all Mum’s hard work, and my attempts to coax her out by regaling her with my own experiences, Pascale never shared anything personal with me, and as far as I know with Mum, again. In her early twenties she emigrated to Canada and didn’t contact Mum for years. There’d been no argument between them, they didn’t fall out. Mum couldn’t understand it and nor could I. I’d never have done anything as extreme as leave Mum and then ignore her, even though I was supposed to be the rebellious one. Pascale sent me her address eventually and I wrote begging her to at least send Mum a postcard occasionally saying she was OK, but although she kept in contact with me, she still wouldn’t reply to Mum. I saw her leaving as a betrayal. I’ve never forgiven her.
Scheherezade
After the divorce, losing our home and Pascale leaving, I thought that if I didn’t work hard at distracting Mum, she might give up on life out of grief and disappointment. To counteract what I saw as Pascale’s desertion, and fearful of the effect it would have on Mum, I became as cunning and desperate as anyone fighting for survival in my attempts to keep my mother alive. I told her about all my adventures to fill up the holes in her life. I stepped into the breach. That’s how my confessional nature developed, how I became the big mouth I am today. I think I did pretty well too. Mum lived to ninety-five and I’m not exaggerating when I say I feel partly responsible for her longevity.
I had nothing to offer her in return for everything she did for me, no money or success. My only currencies were my time and my wayward life. So every night I told her stories the way Queen Scheherazade told stories to the king, except Scheherazade did it to keep herself alive and I did it to keep my mother alive. I really believed that by entertaining her I was stopping her from killing herself. I know what to do. Mum wants to know what’s coming next. I understood ‘Scheheraza
de’s terror: the terror that comes from the literal or metaphorical equating of telling stories with living, with life itself’.* I adhered to this strategy right up to Mum’s death, sharing experiences that I probably should have kept to myself, telling tales of drug-taking and STDs over a cup of tea at the kitchen table, graduating to infertility and marriage breakdown as I got older. There was never any condemnation from Mum, although she did gasp and shake her head sometimes. Whenever my life collapsed – which was often – I’d move back in with her, and no matter my age or what I was up to, she always put a hot-water bottle in my bed at night. Finding that hot-water bottle after narrowly avoiding rape or a beating during my punk years made me feel loved.
Mum advised, supported and steered me through my many disasters. Whether I’d said something stupid to someone at a party, made a mistake at work, fallen out with a colleague, was lonely, applying for a job, in a difficult relationship or spiked with drugs at a nightclub, she helped me make sense of the situation and find a way forward. The world baffled me, people baffled me, I couldn’t understand them most of the time. They baffled her too. Sometimes it took a four-hour phone call, or a series of phone calls spread out over days, for us to work out how to respond to a predicament I was in, but we got there in the end. It took two people for me to function in the world, Mum and me. ‘Two heads are better than one, even if they’re both wooden heads,’ my grandmother Frieda used to say.
When I was growing up not many girls or women reached their potential because back then a woman’s role was to become a wife and support her husband in his endeavours. I only managed to forge an interesting independent life because Mum was always by my side.
Fuck it. I married my mother.
I’ll never hear her voice again. She used to call me Vivvy, or Vivvy-bonks.
* Grey Gardens, a documentary about mother and daughter Edith and Edie Bouvier Beale, 1976
* From David Bayles and Ted Orland, Art and Fear, Observations on the Perils (and Rewards) of Artmaking, 1993. I was led to this book by author Amanda Smyth
24 After Pascale refused to move for Mum’s throat to be cleared, I felt my body deflate and the I-am-normal-and-so-is-my-family facade became too difficult to maintain. All the ugly emotions that should have stayed locked up inside me for another fifty years came slithering out. I could sense all our past resentments and rivalries vying for space, feel them pushing up against me in the little yellow room. Grotesque, thuggish, unforgiving creatures throwing twisted shapes and threatening shadows as they swung from the curtains and flapped around Mum’s head. ‘Hell is empty, and all the devils are here.’* Now I knew what it meant.
The Prodigal Daughter
Pascale finally wrote to Mum from Canada and started visiting once a year. By this time the pattern of me blabbing about my exploits and Mum dissecting and commenting on them was well established. Whenever Pascale came to England she joined Mum as listener and evaluator of my life. I was complicit in the arrangement and saw nothing wrong with the set-up. It never occurred to me that it might be unhealthy. I thought I was being funny and interesting and entertaining, filling the awkward gaps in the atmosphere.
Pascale became increasingly concerned with Mum and her health as the years passed and started hassling me (from 3,500 miles away – just saying) to sort out Mum’s life. But Mum didn’t want a new oven, fridge, mobile phone or computer. If she needed something like a copper bracelet for her arthritis, an electric blanket or a non-slip bath mat, she’d tell me. If it was something expensive, she kept quiet and went without. She was from the war generation, not from the let’s-throw-it-away-and-get-a-new-one generation. She didn’t take taxis, eat something sweet every day, shower every day, go on diets or analyse her feelings. She used to say, ‘The worst four words in the English language are “We need to talk”.’ The idea of therapy or hashing over your emotions made her feel physically sick.
I didn’t like being nagged and ordered around from afar and nor did Mum, but she refused to say anything to Pascale about it. Whenever I mentioned that Pascale’s harassment was annoying, Mum responded with ‘Pascale was so helpful to me when she was young. You understand if I make more of a fuss of her than I do of you, don’t you?’ Or, ‘You’re both so different. Pascale needs love, you need things.’ I nodded, but seethed inside. (What’s wrong with love and things?) Pascale waltzed back into Mum’s affections after disappearing for years, garnering all the praise like the prodigal son. It was odd because Mum hated that parable and often said how unfair she thought it was.
When she wasn’t in England, Pascale set me tasks and checked up on me until I’d done them. That was how it felt to me, although I’m sure that wasn’t her intention. I developed a constant flutter of fear in my stomach which erupted into panic if I saw an email from her. What errand has she set me now? What haven’t I done? I’d jump when the phone rang or my email pinged and felt nauseous when I saw her name on the screen, dreading what her next missive would demand of me. I already felt guilty. I knew I wasn’t doing enough for Mum. I saw her almost every day, phoned her every night, bought her food and talked to the social services for her, but I didn’t get round to things like taking her to the dentist. I hadn’t been to the dentist myself for the last five years, Vida hadn’t been for two.
The animosity I felt towards Pascale was confusing. She’d been a good sister to me. If ever I was in trouble – cancer, divorce, burglary – she was the first person, other than Mum, I longed for. Whenever I felt threatened I wanted Pascale. I thought of her as strong and loyal and capable. If you were in a fight, or needed to break into your own house or face down a bully, you’d want Pascale by your side. She gave me money to put towards a childminder for Vida and flew to London three times when I had cancer and needed the kind of help that only family can give. We didn’t get on once she arrived, but she came, and that’s what was needed. I, on the other hand, have never done the same for her, partly because I was ill for so many years, but mainly because I was never asked. I never knew when Pascale was in trouble. She never told me.
During the last five years of Mum’s life, Pascale started visiting her twice a year. She organised Mum’s flat, tidied up, threw things away and arranged the delivery of beds and special toilet seats from the NHS. It was a relief to have her take over those duties for a few weeks. Mum was becoming difficult, telling carers not to come back, refusing to see doctors and nurses and eschewing food unless I bought and cooked it. The only person she would let do anything for her was me, and I was exhausted.
Chair
For a moment we glared at each other … full of mutual resentment and something darker, the old sense between sisters that there is only really room in the world for one girl. The sense that every fight could be to the death.
Philippa Gregory, The Other Boleyn Girl, 2001
A few months before Mum died I called Pascale in Canada and said, ‘I don’t think she has long left, you’d better come now.’ It was difficult to gauge how long Mum had to live, months, weeks or days, but I wouldn’t have been able to live with myself if Pascale had missed her death. The onus was on me to get the timing of that phone call right. The tension between Pascale and me was just about bearable when there was all that sea and time difference between us, but after my call she flew to London and moved in with Mum and it became apparent that there wasn’t room for two caring, attentive daughters in Mum’s life.
Pascale would sit scowling at me from the corner of the kitchen when I visited them. She didn’t move from the armchair beside Mum’s rocking chair. She stayed rooted to that chair for two, three hours at a time. Didn’t make a cup of tea, answer the phone or go to the bathroom, just squatted there like Cerberus guarding the gates of the underworld. She can’t possibly have plonked herself there to stop me sitting next to Mum, can she? She can’t be that unhinged. I must be disturbed for thinking it. I wanted to sit next to Mum, to hold her hand and smile at her. I often only had an hour or two in between work and going home to Vida, b
ut I didn’t dare ask Pascale to move. If I was right and she was deliberately hogging the space next to Mum, my request would cause a scene. I didn’t want to ruin the illusion of a happy supportive family in front of Mum when she was so near to death.
I noticed Pascale doing the same at the hospital, not leaving the chair by Mum’s bed. In fact, she wouldn’t move from Mum’s side wherever we were, no matter how short my visit. Am I not going to be able to sit next to Mum ever again when Pascale is in the room? And she was always in the room. I didn’t know what to do, whether to accept the situation or mention it and risk an argument. Then one day during a phone call with Mum, when we were discussing what to do with all the stuff in her flat after she’d gone, I said, ‘I bet Pascale will go back to Canada and leave me to sort everything out like she did with Lucien.’ (Angling for a bit of sympathy.)
‘Oh well,’ Mum replied in a disinterested voice. ‘Someone’s got to do it.’ The camaraderie was gone. She didn’t care, she had Pascale to look after her now. Or she couldn’t be bothered. Or she was too fed up with our squabbling and too near death to fake concern. I didn’t say it aloud but a strange retort popped into my head: You know what, Mum? I’m not playing the game any more either.
* William Shakespeare, The Tempest, 1611
25 Maleficence was in the air. Through narrowed eyes I watched my sister entrenched on Mum’s bed and tried to summon some self-control. Don’t degrade Mum’s death, don’t give in to your anger, I told myself, but Vida being robbed of her grandmother’s death was too much to bear. I couldn’t hold the fury in any longer, I just knew I was going to blow. There were so many things I’d dreaded would happen the night of Mum’s death, but the one thing I didn’t anticipate was that the decades of tension between Pascale and me would reach boiling point as we sat around Mum’s deathbed. I’d imagined the two of us holding hands, sobbing, united in our grief.
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