Odd Girl Out

CHAPTER ONE

August 2015

“CAN’T YOU JUST enjoy the silence?” Tim sighs. It’s a thin sound. Dark gray and unhappy.

“There’s no such thing as silence,” I insist.

“Don’t be ridiculous. You’re overthinking it. Again. Just stop talking, close your eyes, and lie here in the dark.”

I know he’s exasperated. There is tension in his voice.

He tries again, this time with a forced softness. “You’ll feel better if you just stop for a moment.”

Stop what? I don’t want to make him cross, so I lie on the bed with my arms rigid by my side. Quietly, trying hard not to move. Trying to be silent. I need words. If I’m not reading words, listening to them, or saying them out loud, I feel jittery.

Not anxious, more a kind of scared. A sense of unease, as if something is going to happen. Like the rumble on a track that speaks of a train about to whiz by. My unease is not the fear of something bad, but of something out of my control. Situations I am not in charge of and events I can’t predict confuse me, whether they are negative or positive.

There are good feelings and bad feelings. The good ones come in pretty colors and feel soft, like cashmere between my fingers. The bad ones come in shades of green and are jagged and spiky, like a piece of plastic that catches your finger and makes you bleed. Silence and nothing happening feel bad.

My sense is that most people chase the good feelings and either sit with the bad feelings until they pass or do anything they can think of to shut them down, to make them go away. I don’t do this. I can’t. I don’t know how. The good feelings can be as overwhelming as the bad. They are just as big.

I can’t name my feelings. I don’t recognize them. Don’t know what they look like. I know all the words that describe them, of course, and I like many of them. I like saying the word optimistic. I enjoy how it feels in my mouth. I like words that sound as they should feel. Shocked is a quick and brutal word, and I imagine that’s what the emotion must feel like. Irritated sounds scratchy and itchy.

No one uses the word neutral when it comes to emotions, but that’s how I want to live. I want to experience life in neutral. Not feeling anything much. For me, the absence of sensation is better than experiencing anything too jarring, too unexpected, too new. I want to move through life with no sudden movements. Sameness is my anchor. I want each day to unfold quietly and predictably.

Tim calls it living in the gray. “If a painting can’t move you or if a piece of music can’t inspire you or take you to the depths of despair,” he has said, “then what do you have? If you can’t be moved to tears or lost in laughter, how do you know you’re alive? If there’s no joy and you strive only for an absence of fear or anxiety, then what kind of a life is that?”

It’s my life, I think. Or at least it’s my ideal life. It’s not that I don’t like music or paintings. I do, at the right time and in the right place. I don’t like listening to music when I need to concentrate. The lyrics mix with the words I am thinking and it becomes a confused mess. Tim is right; I cannot be moved to tears by the arts. But surely that’s OK? If I see a real person in trouble, I will do everything I can to help, so why does it matter that I can’t weep over an imagined life?

In many respects—and certainly from the outside—my life is a good one. I have a solid marriage of twenty years, one where we never argue. I have children I love to spend time with and who love to spend time with me. I live in a beautiful house in a county that is easy to live in. I have an interesting job. I can do pretty much what I want to do.

I don’t think feeling strong emotions would make my life any better. I can see why my being fiery or an adventurer would enhance Tim’s life, however. He hates living in the gray. He wants the peaks and troughs. If anything, all I want to do is quash the fear that envelops me and takes over my mind at times. If I can just achieve neutral more often and learn to do the things that come easily to others, then I think I may finally be content.

The world is an alien place to me. One full of dangers. I need to make sure they don’t catch me out. I am aware of my fragility. Does everyone feel this? I’m not sure. If they do, how do they live with those feelings? I need something to distract me. I need words.

Tim shifts position on the hotel bed and takes my hand in his.

“See,” he says, “isn’t it great to just enjoy the nothingness of lying quietly in the dark? Doesn’t it make you feel better?”

How can he actually believe it is dark? It isn’t dark and it certainly isn’t silent. A dull orange light from the corridor outside our room is seeping in under the door, and the shards of brilliant blue-white from the day outside are piercing irritating gaps in the curtains. A red light nags at me from the smoke alarm above my head. There’s a low-level electrical hum coming from the TV on standby on the wall at the end of the bed. Every once in a while footsteps echo in the hallway beyond the room. Voices bounce from the walls. Then, moments later, I hear key cards being pushed into slots and doors snapping open and slamming shut. Outside, there is a rustling in the trees and the distant sound of people playing tennis. I think I hear a dove. Do they have doves in France?

I go to reach for my phone to find out and then remember I have promised to lie quietly and enjoy the silence. Tim strokes my hand. I hear his knuckles brush against the starchy cotton sheet.

“Isn’t it great having no children to worry about? No demands on us. We can just lie here, get our bearings, and relax until we feel like doing something.”

I feel trapped, as if I can’t breathe. I need words. My iPad is on the floor next to the bed. There must be at least thirty audiobooks on it. I could be listening to a thriller, working out what will happen next. Or to a memoir, vicariously enjoying someone else’s life. I could be distracted from the million thoughts bouncing around my head. I swallow and hear the sound.

“We have two full weeks of nothing to do,” Tim says sleepily, turning over and away from me. After a few minutes his breathing becomes steady. I count to six as he breathes in and then seven as he breathes out. I count over and over until he begins to quietly snore.

I sit up and shield the screen of my phone as I check for any messages from the children. I feel an immediate sense of relief that I am now again on top of things. Tim doesn’t stir.

He is silhouetted against the dark, his body curled up like a question mark. His head is freshly shaved and I have an urge to run my hand along it to see how smooth his skin feels. If I do, it will wake him up. He is thinner than he has been for a while. His weight reflects his all-or-nothing attitude to life, and although he is superfit and sporty, it yo-yos, and his mood goes up and down with it.

Currently it’s at the lower end, which means he is comfortable in his skin. His happiness can be measured by the numbers on the scale at home. The lower the number, the higher his mood. I think this is, in part at least, due to the fact that a low mood, in turn, causes him to eat more and a cycle begins.

I get out of bed and pad quietly across the room. I gather up my things. My iPad, cigarettes, and purse. I pick up my Birkenstocks and open the door as gently as I can. I feel a sense of relief. I am free. Free to be alone. Free to do whatever I want.

I should feel guilty. Weary from yesterday’s journey from Norfolk to the south of France and a run first thing this morning, all my husband wants to do is spend an hour or so recharging before we decide how to spend our first day in Saint-Paul-de-Vence. He is making no demands. After a pretty stressful couple of months, all he wants to do is enjoy a moment of what he calls peace and quiet.

I turn his words over in my mind as I head for the pool. Peace and quiet. What do they actually mean? Surely even in the quietest place on earth you can hear yourself breathing? Peace is an even more elusive concept. The nearest I get to it is when I’m so caught up in researching something that my thoughts narrow down to a single point, like telegraph wires stretching to the horizon. Then the ceaseless chatter in my head is dampened to a bearable level.

When I was a child I felt peace when I was spinning around in circles. I would beg my older cousins to cross their arms, hold my hands, and spin me round and round. I kept my eyes open so I could watch the world whizzing past. After too short a time they would slow down and stop and wobble dizzily over to a garden bench. I would feel sad that it was over and would spin around in a circle all on my own.

The sun is fearsomely bright. I root around in my bag for my sunglasses. Shit! I left them in the room and I don’t seem to have a key. I really can’t risk waking Tim—it would be unfair—so I squint as I walk further into the sunshine.

The pool is a perfect rectangle, with lounge chairs on each of its sides. They are neatly arranged. Just looking at them makes me feel calmer. As I open a small gate dividing the pool from the gardens, I hear a squeak and then metal on metal as it closes. I can smell chlorine and suntan lotion and flowers. It’s the scent of summer.

It is just after twelve-thirty, and with the sun at its highest, most guests have escaped the heat; only three couples have stayed the course. There’s no one in the water, which is as still as a mirror.

I try hard to observe others, to notice how they behave. If I don’t do this, most people—even those to whom I am closest—can become blurred outlines in my head. And when I am not with someone, I struggle to form a mental picture of them—even Tim or the children. If I don’t focus on people, they fall into the background of my world.

To my left, a couple have moved their lounge chairs to be closer together. She is reading Fifty Shades of Grey. He is lost in a thriller whose title I can’t make out. The black cover, blood-red typography, and monochrome photograph suggest there’s probably a detective involved. I picture him battling to solve his last case before retirement, while fighting the urge to down a bottle of whisky for breakfast.

On the opposite side is a girl in her twenties. She’s with a boy a couple of years older. They are locked in their own bubble. Leaning in close, laughing, her legs are draped over his. I catch a little of their conversation. I think they are German. It may be their first holiday together; they are lost in each other but not yet completely at ease.

An older couple in the far corner have the kind of French glamour you often read about. She is in her late sixties and is quintessentially chic, wearing a huge hat with a scarf wrapped around it. She and her partner are sitting in what I guess would be an easy silence. They seem relaxed, speaking only occasionally. How, I wonder, can that be comfortable? What do they do with all the thoughts that must be tumbling around their heads like laundry in the machine?

I find a lounge at the far end of the pool—far enough from the French couple to avoid being drawn into conversation. I pull a huge umbrella this way and that until I achieve just the right amount of shade to allow me to see the screen of my iPad clearly. I take off my striped top and immediately feel the sun on my back, hot against my skin between the straps of my bikini. I adjust the umbrella again and download my email.

The inbox fills with special offers from high-end department stores and trendy fashion shops; press releases for new books, furniture, and beauty products; and lots of junk. I swipe to delete over and over again until I am left with just one message. From my psychiatrist. The report I’ve been waiting for.

I light a cigarette as a waiter walks over. I ask if he speaks English. He does and we begin the kind of exchange I have pretty much every time I order a coffee. Anywhere.

“How many shots of espresso do you put in a latte?” I ask.

“Two,” he replies, smiling, his eyebrows rising a little in the middle.

“And do you have whole milk?”

He doesn’t understand the question and calls over a colleague, who arrives with an ashtray. They talk to each other in French and eventually agree they do have full-fat milk. I’m not sure if I believe them, but I’m desperate for caffeine, so I ask if I can have a latte with the right milk and just one shot of espresso. They head off to a small bar on the far side of the pool in matching uniforms of blue shorts, white polo shirts, and deep tans.

The hotel is perfect. It is exactly how it looked in the pictures I saw online. This is important. When a place looks different from the way it’s been represented on websites or in brochures, I feel confused, as if I don’t know which version to believe.

Tim and I agonized for weeks over which hotel to go for, but I’m glad we chose this one. I like its sleek, white minimalism, and its modernism is in contrast to the medieval architecture of nearby Saint-Paul-de-Vence. Worried about money, I was nervous about going away, but we found a good last-minute deal, and the previous six months had been so full of stress and drama that we needed some time to reset.

I wait for my coffee to arrive, concerned that the order be followed to the letter. I thank the waiter and tentatively take a sip. It’s OK. Not great, but OK. I can live with it. A meltdown has been averted, and I feel my heart rate settle. I’m lying at the side of the pool with the Mediterranean sun warming my toes. I have an acceptable cup of coffee, and I am about to lose myself in a ten-page report from the first psychiatrist to truly understand me.

Life seems OK, so I run through a mental checklist of things I should be worried about. This is our first holiday away from the boys, but at eighteen and nineteen they are perfectly old enough to cope, and I’ve just had a sunny text telling me they’re fine and the dogs have had a long walk. I worked hard before we left to clear away a lot of work stuff, so I have no deadlines to meet. I have been paid by a couple of my clients, so I don’t need to panic about being overdrawn. I ordered oil and had the septic tank emptied, the gutters cleaned, the chimneys swept, and the boiler serviced. And I have an OK coffee.

I scan the Word file on my iPad: 2,432 words on my autism. Confirmation of the diagnosis I was given last week. Confirmation that I am now officially one of the seven hundred thousand people in the UK diagnosed with autism. Confirmation that I am one of the 1 percent. For the first time in my life I am part of something. I am no longer alone. There are millions of others like me. I have never belonged before. Now, perhaps, I could belong.

I’m still unsure of exactly what the diagnosis actually means, and not knowing everything about it—absolutely everything—gnaws in my head. It is red, like danger. I think I’m pleased, but the words glowing from the screen in black and white—Autistic Spectrum Disorder: Adult Asperger’s—pull at my stomach. I get up from the lounge chair and sit down at the edge of the pool, dangling my feet in the cool water.

I finally have some answers. Something to explain why I am the way I am. It is a relief, a vindication. I’m not mad, bad, or sad—the terms some psychiatrists use to categorize patients. Rather, my brain is wired differently. My experience of the world is at odds with how most other people see it. As Morticia Addams once said, “What is normal for the spider is chaos for the fly.”

I’m not alone. There are others like me, people who understand how a label in a sweater or a seam on a sock can cause a feeling so distracting that everything else fades into the background. They would understand what it’s like to take everything literally. As a child, I had a real problem with sayings such as “Has the cat got your tongue?” The first time I heard it, I was so alarmed I had to check my tongue was indeed still in my mouth. I regarded cats with great suspicion for a long time afterward, which was a shame as, generally, I liked them much more than humans.

Others with autism would understand how I can sit down and write a feature article for a magazine or newspaper but cannot get it together enough to get dressed and make myself breakfast each day. They would know what it’s like to be of above-average intelligence but to have never managed to pass an exam. To have been isolated and left behind at school. They would understand that if I have one thing in my diary I cannot do anything else. If I know I have a train to catch at noon, the hours between getting up and leaving for the station are rendered redundant.

These people (those now taking hold in my head, whom I want to meet, whom I need to know) would understand how getting a lovely surprise present is confusing and painful. They would know that all surprises—even those that I had been forewarned would be amazing—hurt, almost physically. A surprise is brutal. It comes without warning. It sparks the bad feelings.

A shadow falls over my outstretched legs. It’s Tim. He is dressed in pale-blue swimming shorts and a white T-shirt.

“Couldn’t do it?” he asks, joining me at the poolside.

“Do what?” I wrinkle my nose as I often do when I ask a question.

“You couldn’t relax enough to stay in bed.”

“No, sorry.” I put down my iPad and accept the cigarette Tim offers me.

“Just thought it would help,” he says, his head blocking out the sun. “It’s been crazy lately, and you need to look after yourself by taking moments to relax whenever you can. We both do.”

I want to tell him that going to bed for no reason in the middle of the day is too weird for me to cope with. It’s fine if I’m ill or have for some reason been up all night. But taking a nap feels wrong to me. Bedtime is around 10:30 p.m., and any other time makes me feel like I’m doing something strange.

Tim sits down next to me. “What are you reading?”

I hand him the iPad. He scans the psychiatrist’s report before giving it back to me.

“You didn’t read it.”

I’m aware I sound harsh, so I playfully splash the water.

“It’s too bright out here. Anyway, you told me at length what would be in the report. It’s all we’ve talked about for what seems like weeks. Sorry, but… I said it would define you, and I didn’t want that.… I just thought we were going to have some time off thinking about all of this.”

Outside his work as a photographer—where he relishes creatively solving problems—Tim doesn’t like dealing with difficult issues. I look at him easing himself into the water until only his head and shoulders are above the surface and realize he must be struggling to reconcile his view of me with the words written in the report.

I’m his wife of twenty years; the mother of his children; a writer, colleague, and friend; and now—all these years in and after a protracted period of ill health on my part—he finds out I’m autistic. It’s a subject that—like most people not directly touched by it—he knows little about.

He thinks Rain Man. The Curious Incident. The Rosie Project. He grew up in a time and place where problems were best swept under the carpet. If you don’t talk about something, it will cease to be. I do feel sorry for him. I know I am obsessive, and it’s probably torture for him to hear me go on about the same thing over and over again.

He has already had enough and swims off to sit on steps on the far side of the pool, half in the water, half out. He looks like a pink seal, reluctant to leave the water completely.

For much of my adult life I have been searching for answers to why I’m not like other people. Why I struggle with everyday life, why my body behaves differently, why my mind is never still. Having been endlessly misdiagnosed with everything from generalized anxiety to (and this is my personal favorite) “bad luck,” I guess I had just given up trying to find an answer.

That all changed when—completely by accident—I stumbled on the first of the three issues that affect my mind and body. The first of the unholy trinity of acronyms I now have after my name: EDS, POTS, and ASD (Ehlers-Danlos syndrome, postural orthostatic tachycardia, and autism-spectrum disorder).

Ehlers-Danlos syndrome is a group of rare inherited conditions that affect connective tissue. I have type III, which means I’m hypermobile, my joints dislocate easily, my skin is supersoft and easily damaged, and I have digestive issues. Postural orthostatic tachycardia, which is often associated with EDS, is an abnormal response within the autonomic nervous system, whose symptoms include a high and persistent increase in heart rate when standing.

I get up and go back to the lounge chair, and Tim eventually swims over to join me. He dries himself off, lights another cigarette, and settles back in the shade of the umbrella, listening to Arcade Fire on his phone. I admire his mindfulness. Like a Twelve-Steps group member, he worries about only those things he has the power to change.

I’m just not built that way. I envy his quietness as I obsess about the structure of my brain, the pros and cons of genetic testing, and why there is so little research linking autism and EDS. To me it stands to reason that if the glue holding your brain together isn’t working properly, then you’ll think and feel differently than others do. The lack of data makes me feel dizzy and sort of agoraphobic, as if I’m in a vast sea and cannot catch sight of land.

I go to the room for my sunglasses. It’s cool inside. I open my suitcase and fish out my notepad and pen, grab my sunglasses from the bedside table, and head back to the pool.

Sitting back down on the lounge chair with Tim to my right—eyes closed, toes tapping annoyingly to the music—I start to scribble in the notebook as I scour the web for research papers linking autism to EDS. When I reach the bottom of the first page of the notebook, I tear it out and put it on the empty chair next to me. I go through the exercise again, this time looking for information on the physical characteristics of autism. Again I tear out the sheet, and I place it above the first one.

I read that the definition of autism has changed in the latest Diagnostic and Statistical Manual of Mental Disorders, which was published in 2013. In the new version, the DSM-5, the terms autistic disorder, Asperger’s disorder, childhood disintegrative disorder, and pervasive developmental disorder—not otherwise specified (PDD-NOS) have been replaced by the collective term autism-spectrum disorder. This explains why my diagnosis of Asperger’s syndrome is also a diagnosis of the all-embracing autism-spectrum disorder (ASD), or autistic disorder.

In the UK, it is the tenth revision of the International Statistical Classification of Diseases and Related Health Problems, ICD-10, rather than the DSM, that is the most commonly used diagnostic manual. It presents a number of possible autism profiles, such as childhood autism, atypical autism, and Asperger’s syndrome. A revised edition (ICD-11) expected in 2018 is likely to align closely with the latest edition of the American DSM. It is likely therefore that Asperger’s will be removed. As with the latest DSM, its diagnosis will be classified under autism.

I ADJUST THE umbrella again to block out the sun and stare at the screen. I vaguely remember my psychiatrist explaining all this, but it got lost among everything else that happened that day. It’s all so muddling. I like things to be clear and definite. This is murky and confusing.

I look over at Tim, desperate to tell him how hard I’m finding it all. I need clarity, but I’m wading through page after page of complicated medical language that is leaving me feeling out of my depth. I think he may be asleep, his favorite holiday hat covering his face.

I try to make sense of the information. I believe I have an understanding of how and where I struggle in real life, but I am finding it impossible to see how it all equates to what I read on the screen.

The diagnostic criteria refer to persistent deficits in social communication and social interaction in a number of contexts. They cite deficits in social-emotional reciprocity. I look away from the screen at the others around the pool, seemingly free from the need for such exhausting self-examination. I work out that deficits in social-emotional reciprocity refers to how conversations happen, how we share our stories, our emotions, and interests. I know the way I do this is not typical. I tell the same stories over and over again. I bore people by going on about my special interests. I don’t initiate social interaction and often don’t respond to invitations to do so.

I work through the list to see how this cold analysis of a disorder relates to me. It’s not the first time I have tried to do this, but in the past I have failed. Confused and befuddled, I have given up every time.

My focus settles on deficits in nonverbal communication. “That’s true,” I find myself whispering. I find eye contact uncomfortable and have to remember to do it. My body language and facial expressions are often off. Often I feel I have to arrange my features into what I believe is the correct expression. I once asked my doctor about this and she said, “There have been certain times when your expression was maybe not what I thought it would be, given what we were talking about. It’s very subtle. A look or an expression or a twitch or something that was slightly different.”

The next section requires little dissection. I certainly do have deficits in developing, maintaining, and understanding relationships. This I have always known and recognized. I can often begin relationships, but I don’t have what it takes to keep them going. I rarely see any of my extended family. I can go for a year without seeing my parents, aunts and uncles, or cousins. I find it overwhelming. I don’t know how to be involved with the minutiae of other people’s lives.

The DSM talks about adjusting behavior to suit social contexts. “I can’t do that,” I mumble to myself. At a smart work meeting, I will curl myself up on a chair like a child. I will say exactly what I am thinking. If I feel worried about something, I won’t be able to stop myself from saying it, even if it goes against social norms.

Tim asks if I’d like to cool off in the water. I hear the words, but I am too absorbed to consider replying. I pretend I haven’t heard him. I think he knows it.

I have moved on to restricted, repetitive patterns of behavior, interests, or activities. “No, I don’t want to swim. I want to do this,” I whisper. Now this I can see. Yes, I have my patterns, but I feel comfortable with them. They reassure me, and where is the harm in that? I need things to play out in exactly the same way in so many given circumstances. I line up my clothes and nail polishes in order of color and feel uncomfortable if someone moves them. I repeat words or phrases in strange ways. Once, when I was in Germany, I heard someone in a restaurant say the word stroganoff. I found myself saying it again and again for the entire trip. In France one year, the word for the holiday was hat, which I recited for two weeks in a soft, plaintive voice.

The DSM