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An imprint of HarperCollins Publishers Ltd
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London SE1 9GF
First published in Great Britain by HQ in 2020
Copyright © Anna Wilson 2020
Anna Wilson asserts the moral right to be identified as the author of this work.
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Ebook Edition © June 2020 ISBN: 9780008342548
Version 2020-06-15
Note to Readers
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Page numbers taken from the following print edition: ISBN 9780008342531
To Dad and Mum – ad astra cinis
Omnia vincit amor, et nos cedamus amori
Love conquers all; let us, too, yield to love
Virgil, Eclogues 10:69
Terminology
Is it Asperger’s or autism or … what is it?
When it was initially put to us that Mum might have autism, the psychologist used the term ‘Asperger’s’, which had been in common usage for a while. When writing this book, I came across many different terms for people with autism and quickly realised that, whatever the accepted clinical terminology at any given time, individuals will have their own preferences. I have tried to stick to the terms used in quoted text; for this reason there may seem to the reader to be certain discrepancies throughout.
Many people with autism who would be described as ‘high-functioning’ (in that they have a high intelligence and can, in the main, function well in society) prefer to be referred to as someone ‘with Asperger syndrome’ or ‘with Asperger’s’, as they say that this easily identifies them at that particular end of the autistic spectrum. One friend said, ‘The minute you say “autism”, people have this set of assumptions, like “Oh dear – does she sit in the corner of the room rocking back and forth and not speaking?” That’s why I say I have Asperger’s.’ Others prefer the more blanket term ‘autism’ as they feel this acknowledges that there is a spectrum within the syndrome. The DSM-5 (Diagnostic and Statistical Manual of Mental Disorders, fifth edition) uses the term ‘autistic spectrum disorder’ or ASD. There is some controversy surrounding this term among people with autism. The DSM was updated as recently as 2013, so if you had been given a diagnosis before that date and had been referred to as someone with Asperger’s, you might well prefer to continue using that terminology. Also, I have met many people with autism who dislike the use of the word ‘disorder’ attached to them. Some therefore use ASC instead – autism spectrum condition. One friend said, ‘I consider my autism to be a syndrome, not a disorder. I feel that the word “disorder” is attached to people who are not coping. I am coping very well, so I don’t like this word applied to me. My autism means I see the world differently from you, that’s all.’
I have met people too who resent the fact that autism is included in the DSM as they feel that it is not a mental illness per se – mental illness may be a result of undiagnosed or unsupported autism, but it is not the cause or the general characteristic of the syndrome.
In conclusion, I have learnt that while diagnosis is extremely important in being able to access support and in helping neurotypicals (i.e. people without autism) to understand the autistic brain, it is most helpful to see the human first and to realise that a label on its own, with no support, is not going to help anyone. Hence my preference for the generic term ‘a person with autism’.
Capacity
This was another minefield into which I walked the minute I entered the bewildering world of mental health terminology. The first time someone mentioned the phrase ‘your mother has capacity’, I assumed they meant that she was ‘capable’. In other words, I thought they were referring to the fact that she could do things. It took someone in the know to explain that ‘a person has or does not have capacity’ is mental-health shorthand for ‘this person has or does not have capacity under the terms of the Mental Capacity Act 2005 to make decisions for themselves.’ In other words, quoting directly from the Act:
People who lack capacity
1 1.For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.
2 2.It does not matter whether the impairment or disturbance is permanent or temporary.
3 3.A lack of capacity cannot be established merely by reference to—
1 (a)a person’s age or appearance, or
2 (b)a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity.
In my opinion, the unexplained shorthand use of such terms is extremely disempowering to patients and families who are trying to care for loved ones. I have therefore tried to unpick such terminology in the writing of this book in the hope that it will be helpful to people going through a similar situation.
Contents
Cover
Title Page
Copyright
Note to Readers
Dedication
Terminology
Prologue
One
Two
Three
Four
Five
Six
Seven
Eight
Nine
Ten
Eleven
Twelve
Thirteen
Fourteen
Fifteen
Sixteen
Seventeen
Eighteen
Nineteen
Twenty
Twenty-One
Twenty-Two
Twenty-Three
Twenty-Four
Twenty-Five
Twenty-Six
Twenty-Seven
Twenty-Eight
Twenty-Nine
Thirty
Thirty-One
Thirty-Two
Thirty-Three
Thirty-Four
Thirty-Five
Thirty-Six
Thirty-Seven
Thirty-Eight
Thirty-Nine
Forty
Forty-One
Forty-Two
Forty-Three
Forty-Four
Forty-Five
Forty-Six
Forty-Seven
Forty-Eight
Forty-Nine
Fifty
Fifty-One
Fifty-Two
Fifty-Three
Fifty-Four
Fifty-Five
Fifty-Six
Fifty-Seven
Fifty-Eight
Fifty-Nine
Sixty
Sixty-One
Sixty-Two
Sixty-Three
Sixty-Four
Sixty-Five
Sixty-Six
Sixty-Seven
Sixty-Eight
Sixty-Nine
Seventy
Endnotes
Acknowledgements
About the Publisher
Prologue
‘Bloody kids, bloody kids, bloody, bloody, bloody kids!’
Mum is standing in front of the mirror in the hall. Her teeth are bared. Her eyes are wide. Her face is stretched and red. Her hair is wild. She’s staring at herself and chanting those horrible words, over and over and over again. Her fists are clenched and she’s shaking them. Can she see us in the mirror too? I don’t want her to.
Carrie and I are hiding by the cupboard under the stairs. We have to make ourselves as small as possible, then Mum won’t see. I keep an eye on Mum through the banisters. She is still saying those words. Her voice is high and breathless. It’s not her normal, Kind Mum voice. She doesn’t look like our normal mum at all. Even her hair is wrong. It’s as though Kind Mum has disappeared completely and been replaced by a monster. She’s holding her fists up by her face now and shaking them and shaking them. Her face is getting redder and redder. It looks as though she might explode. I can’t remember what we did to make her be like this. I know it was our fault – my fault. It must have been my fault because Carrie is too small to have done anything bad. Carrie never does anything bad, anyway. I know that because Mum says, ‘Why can’t you be like your sister?’ So it must be my fault that Mum is like this. I need Kind Mum to come back. I hold my breath and start counting. Can I bring her back if I hold my breath and count for long enough?
I also need to stay brave for Carrie. She’s crying. I want to reach out and put my arm around her, but I mustn’t move. We mustn’t move. Mum might hear us. We have to let her chant and shake her fists until she feels better.
What did I do to make her angry this time? If I knew, I could make sure I don’t do it again. But, try as I might, I can’t remember. All I know is, I wish the anger-storm would pass so that we can have our lovely mum back again.
One
‘People with autism have been described as having an inability to communicate feelings of emotional disturbance, anxiety or distress, which can make it very difficult to diagnose depressive or anxiety states and can lead to challenging behaviour.’ 1
‘There’s nothing to eat!’ Mum says. ‘I need to go shopping.’
It is January 2015. Mum’s in a bad way. She paces from the kitchen to the hallway, grabbing a coat, going back to the kitchen to take a shopping bag from the peg on the back of the door. Her hands are shaking and her face is sweaty. She’s moving fast and I have to jog to catch up with her.
‘Mum – Mum, wait!’ I try to block her way as she reaches for the car keys.
‘I have to go to the shops!’ Her voice rises to a shout.
‘Mum, the fridge is full. You don’t need to go out.’ I am trying to sound calm. I don’t feel calm. ‘And I don’t think you should drive.’
The idea of my manic mother getting into a car and navigating her way out of the drive is frightening enough. There’s no way she can make it to the other end of the High Street safely in the state she’s in.
‘There’s nothing to eat!’ she says again. ‘Get out of my way!’ Her eyes are wide and her breathing is fast and furious.
‘OK, OK. I’ll drive you,’ I say, taking the car keys out of her hands.
I am expecting a fight, but I don’t get one. ‘Thank you,’ she says, suddenly meek.
I don’t wait for her to change her mind. I bundle her out of the house, going through a quick checklist as though taking a small child on a trip to town: bags, coats, umbrellas, bottle of water. Should I ask her if she needs a pee? I decide not to as this will only upset her train of thought and make her panic again. Her panicking makes me as frightened as her anger did when I was small.
We shouldn’t be going out. We definitely don’t need to go shopping. The fridge is full to bursting, with packets of ham and smoked salmon and lettuce – some of them already starting to decompose. I’ve tried to sort through the mess and throw out the rotting food, but Mum caught me in the act. I am not allowed to throw food away; it’s wasteful.
Mum is quiet as we drive down the High Street. The sight of familiar landmarks acts as a sedative. As we approach the supermarket, however, she starts to pant and give a high-pitched cry, her lips pursed into a small ‘o’: ‘Whoop! Whoop!’ It sounds desperate. Child-like. It tears at my chest.
I have to contain this behaviour before it becomes a full-on panic. I think of asking Mum to stay in the car while I go and pick up some food, but then I think I’d have to lock her in. I can’t do that. What if she banged on the window, begging to be let out? What would people think?
‘Come on!’ Mum says, opening the door before I have put the handbrake on. ‘We need to hurry.’
We don’t need to hurry. There is nothing happening today. Nothing other than me watching Mum like a hawk as she paces around the house, obsessing about food and clothes and cracks in the wall.
No wonder Dad is happy to be back in hospital, I think. No wonder he told me he needed a rest.
Mum is already halfway across the car park when she steps out in front of a van. The driver brakes abruptly and scowls as I run after Mum and grab her arm.
‘Slow down, Mum,’ I say. ‘We’ve got loads of time.’
I keep my head low as we enter the supermarket, my arm linked through Mum’s as she pulls me along. I pray we won’t bump into any friends or neighbours. I know what Mum looks like. She looks as alarmed as she feels. Her hair, once so regularly and obsessively coiffed, is woolly and white. Her eyes, once bright green and flashing with passion and life, are glassy and staring. Her jaw hangs slack and she is shuffling, panting and whooping in between repeating, in panicked gasps, that she must buy ‘ham and smoked salmon and lettuce’.
I try talking to Mum in a low voice, which I am hoping sounds soothing. I suggest that she buy something else.
‘What about some chicken? And some fruit and veg? I could make you a couple of things to put in the freezer for when Dad comes home?’
‘No, no, no!’ she says.
Her voice is loud. I know people are staring. I take deep breaths and hold on to her firmly as she tries to pull away. I’m good at this, at least; I’ve had years of practice with my own children when they were small. I find myself calling her ‘love’ and ‘darling’ as I did with my kids too. In the past she might have laughed at this. Today she doesn’t notice.
‘Salmon,’ she says. ‘Salmon and lettuce and ham.’
I grit my teeth. I want to scream. I want to shout, Your fridge is full of rotting lettuce! Can’t you see that? Why can’t you see that?
People are definitely staring now. Some are less obvious and are merely flicking glances in our direction – some curious, some concerned, some just bloody rude. I also want to scream at them. Yes, my mother is a weirdo. She is odd, she is slow, she is whatever else you want to bloody call it. She is round the fucking bend. What do you expect me to do?
I want to take them all on. To stand up on the check-out conveyor belt and tell them: this is my mum. She has a degree in Latin and Greek, she speaks French and Italian and knows more about Ancient Rome than most of you probably know about the back streets of this very town. She brought me and my sister up to be independent adults. She loved us and cared for us and supported my dad while he commuted every day to London. She was stunningly beautiful as a young woman. Men fell at her feet. Yes, she is anxious. Yes, she has problems. But she has lived a life. There is more to her than this.
We get to the checkout, our basket laden with packets and packets of the same things. I tried to slip in other items while Mum wasn’t looking, but she has seen them and already thrown them out. I start to load the shopping onto the conveyor belt, seeing the end in sight, looking forward to packing the bags and getting the hell out of here.
Suddenly Mum lets out an especially loud ‘WHOOP!’
‘What?’ I’m so close to shouting at her. This is worse than the worst supermarket trip with an angry two-year-old. Worse than the time my son stood up in the trolley and ripped open a packet of bread, sending the slices cascading onto the floor.
‘I can’t find my purse!’ She starts trotting on the spot, as though she is treading water.
‘OK, slow down.’
‘I can’t find it! Can’t find it!’ She begins scrabbling in her handbag and shopping bags. The panting and the whooping and trotting get worse as her panic rises. ‘I can’t! I can’t!’
‘It doesn’t matter. Really, Mum. I’ll pay.’ I lower my voice in opposition to hers. ‘We’ll look for it when we get home.’
‘No, no, nooo!’ Mum’s face is etched with fear.
People are shuffling away from us now. Mum is scrabbling ever more fiercely through her bags. The man at the checkout shoots me a look that is probably one of compassion but in that moment feels more like one of judgement. What are you doing, taking your mother out when she is in this state? he seems to be saying.
I don’t know, I want to tell him. I don’t know what I’m supposed to do any more.
When we eventually get home, the purse still unfound, I am wrung out, my reserves of nervous energy worn away to a shred. It’s all I can do not to reach for a drink. I wish Mum were a toddler. Then I might be able to give her a cuddle and put her down for a nap or stick on a video to soothe her, not to mention myself. But there is nothing I can do to calm this highly anxious seventy-one year-old, who once used to soothe and cuddle me.
‘My purse! My purse!’ She has not let up since she left the shop.
All thoughts of soothing evaporate, and I snap. ‘I’ll look for your bloody purse in a minute.’
I storm out of the sitting room and go to make myself a coffee. I can allow myself that at least.
Mum isn’t going to let me be, though, until that purse is found. ‘Anna! Anna! I can’t find my purse!’ She’s rushing from room to room, sweating and breathing like a racehorse after winning the Grand National, whooping and moaning and catastrophising.
‘It has all my cards in it – where can it be? – I am stupid, stupid, stupid.’ She beats out the rhythm of the words with smacks against her forehead. ‘I’ve lost it! – Where is it? – It has all my cards in it—’
As I wait for the kettle to boil I glance around the kitchen. I see a Boots bag on the breakfast bar and pick it up. The purse is inside. I take it to Mum.
‘There,’ I say. ‘It’s all right.’ I hear my voice: a scant approximation of patience. ‘I’ve found it.’
If I am hoping for thanks, or even relief, on Mum’s part, I am to be disappointed. There is a change in her manner: a change so abrupt it’s as though a spell has been cast. A black cloud enters the room, stilling the air. Mum’s expression has changed from one of pure terror and high panic to one of a silent, sullen child. ‘Bolshie’ is the word she would have used, back in the day.
She snatches the purse from me. ‘I knew it was here somewhere,’ she says, and turns to leave the room.
I feel winded. I clutch the edge of the kitchen surface. I bite down on the words I want to hurl at her. I swallow back the torrent of accusations. I push the memory of her panic attack in the supermarket out of my mind.
I walk to the kettle, fetch down the coffee from the cupboard above, fill a coffee pot with grounds and hot water. I follow Mum into the sitting room, where she’s already settled serenely in the green wing-backed chair that’s become her fortress in recent months. I perch on the pink sofa on which my children were never allowed to sit in case they flattened the cushions or made it dirty.
Mum’s breathing has stilled. She stares at me. ‘Talk to me,’ she says.
I can’t. My mind is a seething hot pool of anger, fear and resentment. I escaped all this. I ran away from the source of own anxieties. I ran from the unbearable boiling spring of Mum’s tantrums and her controlling behaviour. I bolted from this small trickle of a town with its gossips and its limitations. I have followed my own course, cut my own way through the valleys and hills. I have made my own life with my husband and my children and my dog, all of whom are having to cope without me as I sit here in a darkened room staring at the wall while my mother sits in a chair and stares at me. A weirdo. A raving lunatic. Mental.
Two
‘Some Aspies, particularly females, do very much want to fit in and they can learn to do so, or at least seem to do so, by copying what they see around them. This makes them less likely to draw attention to themselves, so it would seem to be more likely that females rather than males will go undiagnosed.’ 2
Friends of the family are baffled by what they see as Mum’s sudden decline. Their foreheads crinkle as they take in this gibbering, shrunken figure before them. ‘How did she get like this?’ they ask. ‘How did it happen?’ As though just one thing happened – a fall or a push or a bang on the head – which sent Mum spinning out of control. One friend even asks, ‘What has she got to be depressed about?’, as though all she needs is a pat on the back and an encouragement to ‘cheer up’. I can’t blame them. The way they see it, one day, Mum was their intelligent, confident, outspoken, beautiful friend. The next, she was … this.
But what ‘this’ is, none of us can explain. Her friends wouldn’t go as far as to call Mum ‘mental’, but they don’t have to. I can tell it’s what they’re thinking. They can’t bring themselves to talk openly about her mental health. It’s discussed, if at all, carefully, cautiously. Under their breath, with sidelong glances. After all, it might be contagious, who knows? Who’s to say where ‘this’ starts – the transition from sane to insane?
When I try to explain, I find it’s too hard to go back, to catalogue the events that might have led to Mum’s startling behaviour. In any case, I’m pretty much in the dark myself. Instead I tell people that ‘this’ started on Sunday 12 May 2013.
That was the day my uncle called me. He rarely does, so that in itself unnerved me; and to call early in the morning, on a Sunday, was enough to set my bones jangling. My immediate thought was that someone had died. The last time John called so early was after his wife had dropped dead from an aneurism. No warning signs. Here one minute and gone the next.
No one had died this time. Not literally anyway.
‘I’ve just spent a week in France with your parents,’ John tells me.
I pick up on his tone before he says another word. He sounds calm. But this isn’t lovely, gentle Uncle-John-calm; this is professional Dr-John-calm. He hasn’t rung to tell me about his holiday; he’s quiet, serious, taking his time, getting ready to deliver bad news in as caring a way as possible.