by Laura James
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 of 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 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 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 again.
He has already had enough and swims off to sit on some 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 favourite) ‘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. 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 super-soft and easily damaged, and I have serious digestive issues. Postural Orthostatic Tachycardia, which is often associated with EDS, is an abnormal response within the autonomic nervous system, the symptoms of which include a high and persistent increase in heart rate when standing.
I get up and go back to the lounger 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 from others. 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 sunbed 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 sunbed 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 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 ICD-10 (International Classification of Diseases), 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 amongst 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 am 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 favourite 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 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 non-verbal 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 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 behaviour 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 replyi
ng. I pretend I haven’t heard him. I think he knows it.
I have moved on to restricted, repetitive patterns of behaviour, 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 colour 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 over 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 talks about insistence on sameness and inflexible adherence to routines. My need to do so many things the same way is something people often remark on. It can drive Tim to distraction. My coffee shop routine; my need to use the same service stations on any journey. My need to have my bed just so. No green lighters. No keys on tables. Saying Hello, Mr Magpie, how’s your wife? to every solitary magpie I see. There are so many. These things make me feel safe. Usually, I love them, but occasionally they imprison me.
The next line of the criteria talks about highly restricted, fixated interests that are abnormal in intensity or focus. These, I see now, are my intense or special interests. My passions. My obsessions.
It moves on to hyper-reactivity or hypo-reactivity to sensory input. I have sensory issues that can dominate my life. On bad days I feel under endless attack from the smells and sounds of my environment. I feel assaulted by bright lights. I can tell at the front door who has had a bath and what oil they have used. My children occasionally refer to it as a superpower. Conversely, I also seek out pleasant sensory experiences with an unusual fervour. I can’t go through a clothes shop without stroking every cashmere jumper or soft, furry garment. Sometimes when I am working I have to go upstairs to find my favourite scent and inhale it deeply.
The definition of ASD refers to subjects being over- or under-sensitive to pain. My threshold is seriously high. I take no pain relief after any operation and didn’t when giving birth to my children.
I need to process this information and wish I could talk to Tim, but he has had enough of feeling isolated while just a few feet away from me. The lounger is now unoccupied. How did I not notice he had left?
Instead, I pace in a short line from the lounger to the edge of the pool, wondering how all this information fits together and what it all means. I hear the English woman laugh and say something to her husband and I’m suddenly aware of how crazy I must look, pacing back and forth in a white bikini and Panama hat.
Tim eventually returns to try again. ‘Shall we walk down to Saint-Paul and have an early supper there or would you like to get the bus to Nice?’
I was so lost in my thoughts I had almost not noticed he was near me. Now, seeing him trying to relax as his wife paces like a caged animal, I feel something I think may be guilt.
‘Let’s walk down and have a quiet supper,’ I say, sitting down on the edge of his lounger, the wetness of his swimming shorts cold against my skin, causing me to itch. ‘And I’ll do my best not to talk about anything heavy.’
‘It’s fine. I just don’t want it to be . . . well, the only thing we talk about.’
‘But you don’t like to talk about anything. You’d be quite happy saying nothing. If you can suggest something you would like to talk about instead of my diagnosis then I’d happily talk about that.’
The conversation ends there. Unresolved. It’s as if we both know there will be no winner, only losers. We melt into the sunshine – Tim lying back with his eyes closed again, trying for a tan; me tidying away my notepad and then, searching for another distraction, reading a book about a young girl who has disappeared in mysterious circumstances. I like thrillers. I enjoy working out the answers and being proven right.
Later, feeling a little more relaxed and lazy from the sun, we begin the long walk down the hill into Saint-Paul. We discuss the houses we’d like to live in and Tim enjoys saying bonsoir to locals we pass en route.
Tim takes my hand and it suddenly strikes me that this is nice. We talk about what we see, about the weather, about what we’re going to do while we’re in France. It’s pleasant and easy when for short periods of time I can manage to stop obsessing.
Saint-Paul is chocolate-box pretty. Nestling on a hill with medieval towers, cobbled squares, gift shops, clothes shops and bakeries, and locals playing boules in front of Pernod-branded bars, it is very quaint and very French. We find a restaurant with stunning views over the valleys of the Alpes-Maritimes down towards Nice and Antibes. It’s not yet open but we are encouraged to take a table on the terrace. The woman who runs it is chatty and smiley and Tim talks to her in French. They are both animated, and listening to a conversation I cannot understand, the words washing over me, is relaxing because, as I don’t speak French, I know I don’t have to join in.
We order our food. I have many issues around food, but today the menu seems easy. I order a fish stew. There are no ingredients listed that I cannot cope with and, by the time it arrives, I’m ready to eat. It’s easier to eat on holiday when there’s not much else to think about and interruptions of any kind don’t send my hunger scurrying. At home I find it almost impossible to feed myself consistently and I end up surviving on coffee, cigarettes and chocolate.
A cat weaves its way around the tables. It is lean and insistent, subtly striped, with oversized ears. It has an Egyptian appearance. I feed it small pieces of fish and it rubs its face against my fingers, purring loudly.
‘Do you want to talk about it?’ Tim asks, when the cat finally jumps from my lap to try its luck with a couple who have just sat down. They are Americans and they complain to the restaurant owner about the hygiene issues of an animal around food.
‘About what?’
‘Your diagnosis,’ he says. He still cannot comfortably bring himself to say the A word.
‘If you want to,’ I reply. I know it’s hard for him, so I’m grateful he’s made the first move. I push my plate to one side and reach for a cigarette. I see Tim scowl at another half-eaten meal in front of me. ‘I just feel as if all my life I have thought I am a dog and have now been given the bombshell news that I am actually a cat.’
Tim laughs, but kindly. He pours me some water and tops up his own glass.
‘I don’t know which bits of my personality are down to the autism and which bits are inherently me.’
‘Why does it matter?’
‘I don’t know,’ I reply. ‘But for some reason it really does.’
The waitress comes over and Tim orders another bottle of water and a beer. I wait for her to leave.
‘All my life I’ve tried to hide my weirdness from others. I’ve tried to pretend to be just like everyone else and now I don’t know what to do or how to behave. I feel lost.’
I take a sip of water and enjoy the feeling of the gentle warmth of the setting sun on my back.
I reel off facts. ‘Did you know 87 per cent of people with an autism diagnosis are unemployed? Or that 42 per cent of autistic women have previously been misdiagnosed. Can you believe that the vast majority of research has only looked at boys? Also, I found out the life expectancy of an autistic person is between ten and thirty years shorter than for a neurotypical person. I will probably die way before you.’
This is a classic autistic info dump. I have all these thoughts in my head and I have to get them out. Even if the listener is so bored they are contemplating throwing themselves off a cliff to get away from my incessant chatter, I simply cannot stop.
Something crosses Tim’s face. I try to think what it means. I spend my life trying to work out what Tim is feeling or what his mood is. He seems something, but I’m not sure what. Bored perhaps. Yes, I’m sure he’s bored. He is bored. He doesn’t respond well to random facts or sta
tistics and he is fidgety. He’s looking at me, but also around the restaurant, sometimes directly at me but at other times at the view over the valley towards the Mediterranean or at other guests slowly filling up the terrace. I can’t stop talking.
‘Part of me just can’t believe this is happening. To me, I mean, I would never in a million years have thought I might be autistic. It just seems so surreal and I can’t think about anything else . . .’
Tim cuts in. ‘What are you going to do? Now you know.’
His beer arrives and I wait for the waitress to leave. ‘I think I’m going to try to concentrate on having a lovely holiday and not driving you too mad.’
The words sound rehearsed. It’s what Tim wants to hear. He raises his bottle of Peroni as if toasting the idea of two weeks without difficult conversations. We each find somewhere else to look before Tim breaks the silence.
‘Oh, come on. You don’t mean that. It’s not going to happen. And what about later? I’m worried that you’ll become your diagnosis. Defined by it. That things will change and you will never be the same as you were before.’
It’s rare for Tim to confess to a worry, so I feel I have to take it seriously. I think about it for a while. I know I’m going to start seeing a psychologist. The first appointment is already booked. I have a real sense of hope that this time therapy will fix me. Now we know what we’re dealing with, now the problem is out in the open. Surely there is a way to make it not matter anymore. I know there’s no quick fix – no pill I can take – but if I work hard enough the therapy will change my life. Of that I’m sure.
‘I’m going to get better,’ I say. ‘I will become the best possible me.’
We stare at each other for a moment. He is going to say something deep, something profound. He is going to tell me that everything is going to be OK. That he loves me. Instead he starts to laugh, quietly at first, then louder until he is laughing uncontrollably, with tears in his eyes. I, too, find myself giggling, losing control. Other diners in the restaurant are staring at us, but we cannot stop laughing.