Odd Girl Out

by Laura James

  Now I worry we’re close to breaking point again. I have been so unstable over the past few months and Tim seems to be spiralling down to a dark place. When he is depressed his face looks different. It’s a cliché to say the light goes out of his eyes, but it’s true. His eyelids become heavier too. As if keeping them open is just too much effort. Everything is too hard for him and my quickness throws his torpor into sharp relief.

  ‘We should talk,’ I say when he gets up to put his guitar back in its case. His sigh fills the room.

  It’s only 6 p.m., but it’s so dark outside. We go to a quirky wine bar in our local town. All the restaurants are fully booked. From the minute we walk in, I know it’s not going to go well.

  The room is too small, too bright. The tables are on top of each other. The voices of the other patrons too loud. We are seated under an air-conditioning unit which is blasting hot air onto us. Although sensory issues can be a feature of autism, they also can plague those with depression. It is as if any additional layer of stimulation from the environment proves too much. I get overwhelmed, whereas Tim gets angry.

  He complains to the owner and she turns off the air-conditioning unit. We order our food.

  ‘You wanted to talk,’ he says, pouring us both some water.

  ‘I wanted to say sorry,’ I tell him. ‘I know I’ve been hard to live with lately.’

  ‘You’re just so wrapped up in the boys leaving. It’s as if there’s no room for anything else.’

  ‘I’m sad.’

  ‘Yes, but you have to get over it and start living. We will find our level.’

  ‘I miss them so much.’ I play with my hair, pulling it down over my mouth.

  Tim sighs. ‘I miss them too, but it’s the natural course of things. The alternative – their being here forever – doesn’t bear thinking about.’

  ‘I just can’t see the point of me now they’ve left.’

  ‘How do you think that makes me feel, as your husband?’

  I sigh. It is a table of sighs. It’s always about feelings with Tim. Things can never just be what they are, they have to be examined and dissected in terms of how they make him feel.

  ‘Sorry,’ I say.

  ‘We need to find a way to reconnect,’ he tells me. ‘Can’t you see it as having the freedom to do whatever we want?’

  This makes no sense to me. I don’t think we have any more freedom now than we’ve ever had. If anything, we have less as we have to be at home for the dogs now the boys aren’t around to help out.

  ‘We should think of some things we might like to do together,’ Tim says. He seems restless. His eyes remind me of those of a caged tiger. He’s looking for drama, for something more.

  ‘I just feel my life is too big and too small all at once,’ I say.

  Tim looks at me. I mean really looks at me. Not the grazing glances that long-term couples tend to favour, but he really regards me.

  ‘In what way?’

  ‘Well I suppose I always feel I’m running to catch up in terms of making enough money to keep the whole thing going for another year. I feel as if I never stop. On the other hand, I also feel as if the nice bits are getting fewer and farther between. It’s as if there’s nothing to look forward to anymore. The world disconcerts me. Life has changed too much and too quickly. I don’t recognize where I am anymore.

  ‘It just seems as if every day another thing happens and there’s something else to worry about. As soon as I manage to deal with something or accommodate it into my life, something else happens. I am struggling to cope and something is going to crack. I feel brittle.

  ‘I feel physically worse than I have for years and emotionally so less regulated than usual. I am tired to my core. I’m sad and I’m sick of my body and my brain. I just want everything to stop.’

  I am shocked I have said all this. I put my head in my hands. The food arrives. I find it hard to eat.

  ‘I’m so sorry,’ Tim says. ‘Things have to change, don’t they? Not you. I don’t want to change you. The stuff around you.’

  Silently I agree. I can’t go on like this. I am burnt-out and exhausted. This, I have read, is common in autistic people, particularly those who have struggled for years to ‘pass’. It is called the cost of passing. It is essentially exhaustion brought on by the extra strain of pretending to be something one is not.

  Tony Attwood summed it up well for me. He told me: ‘People with Asperger’s or autism expend a huge amount of mental energy each day coping with socializing, anxiety, change, sensory sensitivity, daily living skills and so on. So they’re actually expending more mental energy. Think of it as an energy bank account. They are withdrawing so much energy throughout the day just by surviving. It is why children at school, for example, have almost no mental energy left for the actual lesson – because they’re coping with the sensory, the anxiety, the social.’

  Dr Judith Gould, of the Lorna Wing Centre for Autism, agrees. She told me: ‘A lot of the women I see are mentally and physically exhausted, with very low self-esteem. They have to learn these social skills. They have to learn how to use the right body language, how to say the right thing. It’s another skill, isn’t it? Some people are better than others at picking it up. There’s a spectrum, a dimension of sociability.

  ‘Neurotypicals don’t have to learn to talk about the weather, or those subtle things about social interaction. It’s wired within us, but for somebody on the autism spectrum it’s not there. You have to learn the social rules. If you’re highly intelligent and you have good verbal skills you get by by watching, observing and copying and you appear to be OK. Women and girls are particularly good at masking what is essentially a lack of social instinct.’

  I have a high tolerance for difficulties, for unusual situations and for stress. In the past few years I have had surgery ten times, changes in my working life, and two children have left home. I have been told I have a complicated and sometimes dangerous genetic condition and, what’s worse, I have passed my EDS on to Toby. I have run a home, worked full-time, been in therapy and have been told I am autistic, something which was at once shocking and liberating. I am exhausted. It is too much for anyone to cope with.

  I have dealt with it all as stoically as I can. Not wanting to cause any issues for others, I have tried to bounce back from each setback as quickly and privately as possible. I simply carried on. A week after leaving hospital after major surgery I boarded a plane to Sweden to visit a potential new client. The day after an operation to cure an abscess, I went to London for two days and attended a series of meetings. This, I am starting to see, is not normal behaviour.

  I can’t carry on like this. I am spent, unhappy and terrified of the future. I want the world to stop. I imagine everything frozen in time and pure silence. This is what I need. Calm, quiet, nothingness. I need space and time to get my head around everything that has happened. More than that, though, I need a path forwards. I am halfway through my life. The rest of it has to be different. I cannot go on like this.

  The waitress comes over with the pudding menu.

  ‘Want to share a chocolate brownie?’ Tim asks. I nod and he orders for us.

  ‘But,’ I add as she turns to leave, ‘only if we can have it hot and if the ice cream can be served separately.’

  Tim and I share a knowing smile and he puts his hand on mine. I feel a warmth spread through me.

  I’m lucky I don’t have to pretend with him. I can be myself. If he accepts me as I am, maybe others will too. Perhaps now is the time I need to embrace my differences and stop trying to hide them.

  CHAPTER THIRTEEN

  October 2016

  I’m starting to accept I cannot be perfect. Equally, I hate to make mistakes, to live with the fact that I have done things badly or wrongly. Every one of my wrong steps is writ large in the part of my brain where I store up guilt.

  I want to move forward, but I’m held back by what I think might be resentment. My autism might have been spotted earlier –
perhaps should have been spotted earlier – and I was denied the help and support I needed. Did I live forty-five years that could have been better?

  Tim’s view is more pragmatic. ‘You don’t know it would have been better. You just know it would have been different,’ he tells me. ‘On the one hand it would have been great to have had more time, with greater awareness of your issues and their root causes. On the other, it might have shaped how you did things and that might not have been a good thing.

  ‘I also think you’re emotionally mature enough now to make the changes you need to make. I’m not sure that was the case before.’

  I wonder if he is right. I can certainly see the benefits of acknowledging the grief I feel about my late diagnosis and the fact I now have to learn how to come to terms with it. But the realization that I have less time to make the changes I need to make is hard to bear. I’m also aware there will be consequences.

  For Tony Attwood, late diagnosis for girls and women usually means a greater number of issues later in life. He told me: ‘The trouble is that girls are good at camouflaging it. We often don’t pick them up until they’re in their teens or older.

  ‘Those diagnosed late or in adulthood have worse outcomes. They didn’t get support and understanding at a formative time in their lives. What concerns me is that they created a scaffolding to survive, but that it may not have been the best approach and that sometimes that scaffolding has led to all sorts of issues and concerns, such as depression, low self-esteem, and not having an anchor in society.

  ‘I ask, When would you have liked to have known? and they say as early as possible. I thought I was stupid, mad, bad. I wouldn’t have been depressed. I wouldn’t have escaped into imagination. I would have handled things differently. I could have explained myself. People would have understood me. I could have been protected. And, after the euphoria of diagnosis and an explanation, there is the wish that it could have happened earlier. Then there is the fact that the scaffolding has been taken away. What do I put in its place? There’s almost a grieving for the lost person.’

  I realize I do feel a sense of resentment towards all the doctors who have missed my autism (and my EDS) over the years. But what good does that resentment do? It doesn’t help me deal with the feeling of sadness at the opportunities I may have missed and the hardships I might have unnecessarily suffered.

  On an intellectual level I am beginning to understand that this abrasive, green feeling will only make things worse in the long run. My autism means I struggle to imagine a future – any future – but what choice do I have? The future is going to happen one way or another. I can’t live a Groundhog Day life. I must take courage and move on.

  It’s early and I’m in the office. Tim wanders in, still in his pyjamas. He raises an eyebrow as he looks at a pile of papers on my desk.

  ‘What are you up to?’

  ‘I’m trying to understand myself, to find out what’s in my head.’

  ‘Well, good luck with that. I’ll come back in five minutes when you’re done.’ He ruffles my hair as he leaves the room.

  As humans we tell ourselves stories. We lie to ourselves. We convince ourselves that we are right or we are wrong or nothing could have made a situation different. But surely the ability to change is within all of us.

  My head is starting to hurt and, as a dull autumn light creeps into the room, I realize I have done nothing but waste another morning. Sometimes I will hear a phrase and see that I have never quite understood it before. Today, I think about how I have spent my time. Spent it. Like money, I have squandered it. Today is gone and it is never going to come back. It has trickled through my fingers. I can never have that time again.

  I must achieve something. I decide to tidy upstairs. Even though I am hugely disorganized and my environment is generally slightly chaotic, I feel so much calmer when it is tidy and there is order.

  My eureka moment is suitably prosaic. It comes to me as I am folding some towels that have been on the floor since I took a bath last night. It hits me out of the blue.

  All this time I have been thinking that the way to make things better is to become as neurotypical as possible. I have been trying to force myself into a hole in which I will never fit.

  As I fold the towels into a neat pile, I think . . .

  I am a cat, judging myself by dog behaviour.

  It was doomed to failure. I was doomed to failure. And, perhaps worst of all, it was a failure of my making. I have spent too many years trying or pretending to be something I am not and I am never going to succeed.

  Whenever I tell anyone about my autism the response is always the same. They are surprised. They can’t quite believe it. I seem too much like them and too little like the stereotypical view of autism they know. They think I can’t be autistic because I am married. Because I work with words. Because I have successfully raised my children. Or because I don’t say anything offensive in conversation. I am not what they expect.

  I am not what I expect either and still, a year on from my diagnosis, I am fighting to live a neurotypical life. Where did it get me? Nowhere I wanted to be. I was sad, burnt-out, lonely, demoralized and confused.

  The importance of environment begins to make sense on an emotional level. I need to stop trying to be less autistic and start creating an environment in which I can thrive in my autism. I must leave the shadows of an imperfect past and start living in the now.

  As soon as it comes to me, it seems so obvious. I have to embrace my autism. I have to accept that there are things about me I will never be able to change. I have to stop imagining the other life that I believed was out there waiting for me.

  There is a Buddhist quote I have always loved. Only now, as I line up bottles of bath oils, does it make complete sense to me.

  In the end, only three things matter:

  How much you loved,

  How gently you lived,

  And how gracefully you let go of things not meant for you.

  In the past I have always thought these lines related to lost loves, success that went to someone else or a material item that was somehow out of reach. Now, though, I get it. I was not meant to have a neurotypical life. I have to stop striving for something that isn’t ever going to come my way. I have to stop trying to achieve the impossible and instead work to build – from the ground up – a life that works for me.

  If I don’t have the inclination to strive for joy, that’s fine. That’s just how a cat is. I must instead learn to find contentment where I can. I need to look at what I am and what I want to be. It’s really as simple as that.

  I need to accept that I have made mistakes and, instead of rolling them over and over in my mind, I need to own them, make sure they don’t happen again and move on with my life. I cannot be held back by the guilt I feel or allow my mistakes to define me.

  If I am afraid, I must not fight against it or pretend it isn’t happening. My fear is real. The struggle is real. To minimize it is wrong. It does me a disservice. I must learn to ask for help.

  I stare out of the bathroom window. Needing support isn’t ugly or wrong. It can actually be quite beautiful. I am reminded of an Instagram post by Rune Lazuli that showed me vulnerability can be beautiful . . .

  Crawl into this body, find me where I am most ruined, love me there.

  CHAPTER FOURTEEN

  October 2016

  I feel so much more positive about making the changes I need to make, but am still confused about how to go about it. It’s that social imagination thing all over again.

  M had asked me: ‘Who in your life supports you?’ Building an adequate support network was one of the goals I had to set for myself.

  I am now turning thoughts into action and am approaching it with an autistic focus. I am spending more time on Facebook and Twitter, building myself a community of like-minded friends online. I have been meeting – albeit virtually – other autistic women. I have been asking for advice on how to cope in certain situations and have bee
n pleased to find, occasionally, that I’ve been able to offer the odd bit of guidance to them too.

  One of the things I find striking is how much pride exists in the autistic community. Steve Silberman once said during a TV interview that autistic adults were leading the ‘first civil rights movement of the twenty-first century’. They are. They fight fiercely for understanding and acceptance. Involvement in such a cause, albeit from the sidelines, makes me feel part of something bigger than me. I’m also grateful I have people I can talk to twenty-four hours a day.

  I am making an effort to connect more personally with some of the women I’ve been speaking to online. Among them is autism trainer and author Sarah Hendrickx. When I was at a particularly low point, I rang her and asked for advice on all the things I felt I was getting wrong. She was honest and funny and helped me find a clear path forward.

  She told me about the multiple systems she has in place, because she knows that if she doesn’t write things down, she will forget. She has a diary, a weekly planner and an online calendar. I’ve been trying to manage for years with just iCal. She made me see that my approach would never work. I bought a Daily Greatness Planner for work and have been filling in every last thing I need to do.

  I have stuck a Post-it note to the bathroom mirror, reminding me to clean my teeth and to cleanse, tone and moisturize. Most days I remember to stick to this routine. Such visual prompts help.

  Sarah explained how to delegate to the future. She told me: ‘I sit down and think, Does this actually need to be done this week? If the answer is no, the act of writing it somewhere else – a week or a month ahead – gets rid of it so it is gone and it doesn’t bother me anymore.’

  Her suggestion has revolutionized the way I think. Whereas once the jobs I needed to do backed up like countless cars in an infinite traffic jam, now they feel more manageable. I am learning to prioritize my way out of panic and I am getting so much more done.