by Laura James
The woman tells us her name is Gertrude. She has lived in the house for years. She knew Marina well.
‘She led a rackety life.’ Gertrude’s accent is Hungarian I think. I look around the room, which is perfectly ordered. I feel comfortable here. Comfortable enough to tell her the truth.
‘Marina was my mother.’ Gertrude looks surprised. I can see her grasping for the right words. They’re not coming easily.
‘I was adopted,’ I say, rather pointlessly.
‘Marina was difficult,’ Gertrude says. ‘Her little boy was lovely though. He spent a lot of time here.’
This is new information. I need to process it. Marina had a son that she kept. I knew she had five boys, but I thought she had left them in America.
‘What happened to him?’ I ask. I’m wondering if he died with her. This seems unlikely, but my brain doesn’t feel like it’s working too well.
‘He lives in Clarendon Cross and teaches t’ai chi in Holland Park,’ she says, handing me tea in a pretty china cup. ‘You’ll catch him there this afternoon if you’d like to meet him. Go to the cafe and ask for Conn. Everyone there knows him.’
While I drink my tea, Gertrude’s voice washes over me as she talks to Tim about how the area has changed over the years. About her own children and her husband, a jazz musician. I can’t speak. I have slipped into my safe space, where words elude me.
‘We’ll take a walk over to the park then,’ Tim says, thanking Gertrude for the tea and her time.
Outside, the air feels warm after the cool drawing room.
‘I can’t believe it,’ I say to Tim. ‘Dead.’
‘Yes. I’m sorry,’ he says. He moves to hug me but thinks better of it.
I’m not sure how I feel. I say nothing. We thread our way through Notting Hill, back to the car as the sun starts to dip below the rooftops. When Tim turns the key in the ignition the radio comes on. It’s playing ‘Life on Mars’.
Tim pulls out of the parking space and I gaze out of the window. That’s that, I think. We pull up outside the entrance to Holland Park. I used to bring Lucie here to the One O’clock Club when she was just a year old.
‘Want to go and find your brother?’ Tim asks. I nod and we get out.
CHAPTER SIX
March 2016
Three phones are ringing and I can’t decide which one to pick up first. Fridays are usually quiet. A magazine I work on is going to bed on Monday and there’s confusion over which cover picture we will use. I have a piece I need to write on etiquette for another magazine and have agreed to make a video on what it feels like to become overwhelmed by sensory stimuli for the Guardian online and the National Autistic Society. I need to write an outline about an incident in a restaurant where I became overwhelmed.
There is too much to do and I can’t figure out the order to do it in. Tim and I answer a phone each and I let the call on my mobile go to voicemail. Both calls are quick and easy to deal with. They both relate to one of our PR clients. Someone wants a quick price check, the other an image.
It is quiet again. I tell Tim I’m feeling engulfed and don’t know what to do next.
‘Send me an email with a list of all the things you need to do and go and get a coffee. When you get back I’ll have prioritized them for you.’
As I sit in the steamy fug of the coffee shop I begin to slow down. I feel less panicky. I know Tim will come up with a solution and, if I do exactly what he says, everything will get done. Tim is able to prioritize things in a way I find impossible. It is a skill he has that I don’t.
When I get back home, there is a clear list on what to do and in what order.
I need to ring Lucy, Mary Berry’s assistant, and arrange a time for a photo shoot. I need to book Eurostar tickets for another shoot we’re doing in France in a couple of weeks with a French news journalist. I have to read a set of recipe proofs, send out a press release, write a piece on trends in colour and find a celebrity to interview for a piece on best-ever meals.
Many couples would struggle with being together all day, every day. We don’t. We work easily together. We don’t sugarcoat our criticisms. I can see when we are with others that they find this disconcerting, but I like how straightforward it is. We are always completely honest about how we feel the other is doing on a particular project. We are never unkind, but there is no mincing of words.
When I tell people about my autism or they read something I have written, one of the first points they raise is how unusual it is for someone with a condition characterized by communication difficulties to communicate for a living. I’ve thought a lot about this. It was one of the things that made me think twice about asking for an assessment. I love my job. I love the variety, the filling of empty pages, the decisions I have to take, the fascinating people I get to interview.
The key to why I find it easy is that there is a structure to everything. A feature needs to be a set number of words. An interview is not like a social conversation. I get to ask any question that pops into my head and it isn’t seen as impolite. There is no hedging around a subject and little small talk.
Steve Silberman, author of the hugely successful Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently, believes that a major workplace obstacle for those with autism is lack of support. He told me: ‘Autistic people often face considerable challenges in the workplace. They need more pervasive accommodations, more comprehensive forms of support.
‘I do think autism is a disability but I’m not saying autistic people aren’t able. In terms of the social model of disability, if there are no wheelchair accessible bathrooms, then being in a wheelchair is really disabling, and if there are no accommodations made in education and the workplace, then being autistic is actually very disabling. I think that’s the difference.’
My psychiatrist, Somayya Kajee, agrees. She told me: ‘Generally, as with most people, autistic people have a lot to offer but it is about finding the right environment. I think sensory difficulties can be a problem. I’ve seen about five people in the last three months whose main reason for wanting the diagnosis was to aid employment.
‘Some of them would fall at the first hurdle. They couldn’t get through the interview process because they struggled socially or they were so anxious. But if they had managed to get through that part, then actually within the work environment they would also struggle because maybe things weren’t how they wanted them to be or they got fixated in doing things in a particular way and they couldn’t then adjust to doing them differently. They may have found it too noisy or that people made fun of them because they were different.
‘So, without a doubt, I think if people have a diagnosis of autism and they can be placed in supported work or in a workplace where there is a level of understanding they can do well.
‘It’s the simple things. I remember with one woman we just suggested earphones, earplugs or headphones and having her desk slightly moved, into a corner. One man got to work and his parking space wasn’t available and that sent him into a complete tailspin. So simple things like that go a long way. Interestingly, a lot of people with autism will find employment in a niche that they are really very good at, valuable and productive.’
Autism brings with it many problems, but it also brings many benefits. My ability to zone into one subject and pull out the salient facts quickly and easily is surely something all journalists need. My ability to spot a trend or see a pattern is a necessary skill for every aspect of the work I do.
My meticulous need for accuracy – and for all facts to be verifiable – is an important trait for someone who essentially disseminates information.
Somayya Kajee believes it is important to remember these benefits, these positives. She told me: ‘I do think people with autism are just literally wired differently and not in a negative way. There isn’t necessarily anything wrong. If we are looking at people with autism, they can struggle with a lot of things that are part of society’s constru
cts – how things should be because the vast majority would agree that’s how they should be.
‘So it doesn’t mean that you’re wrong. Nobody wants to feel that they’re different and no one wants to struggle with sensory things and with being so rigid. But there are a lot of people, for example, who use their ability to hyperfocus positively. And there are companies that positively discriminate.
‘I think if you look at prognostic factors, people who find their niche and are able to put their energy into something they love, something that’s meaningful, then they do get a lot out of it. It doesn’t matter that they may not be as socially active, because they’re getting joy and happiness from what they’re doing. I guess it’s about identifying those things and supporting people to do just that.’
I love my work, but does it bring me joy? I think a lot about the point of the future. I might not strive for huge personal happiness, but is it wrong that I don’t try, even if it is just for Tim?
Sarah Wild believes autistic happiness is different. She says: ‘We neurotypical people have to stop projecting what our concepts of happiness are onto the autistic population because autistic happiness is not the same.
‘Neurotypical professionals have ideas about living independently, having a job, being economically viable, having friends. But they’re all neurotypical indexes of happiness and no one has bothered to ask autistic people what makes them happy, what are the things they need to be able to function. That’s the next thing that needs to come. Much more voice from the autistic community.’
I love interviewing people. I don’t feel any different talking to a scientist than I do to a celebrity. It is a huge privilege to be able to ask questions of someone, whether those questions relate to genetics or the latest film they are starring in. Meeting experts is pure heaven for someone autistic. The access I am given to someone’s knowledge never fails to make me happy. Even more so if they happen to know something about one of my current intense interests.
I have access and I have a voice. Something I try to use for good whenever I can. Of course I suffer from impostor syndrome. I am a girl with no O-levels, who can’t add up and doesn’t know exactly what a split infinitive is. I should not be allowed to do the things I do.
It would be a lie to say that I find everything at work easy. I don’t. I struggle with things on a daily basis. My desk is in permanent chaos. I write things on pieces of paper and then spend hours upending bins trying to find those few scribbled words that seem meaningless to anyone else, but are essential for something I need to do.
I live in fear of some, but not all, deadlines. Sometimes the terror is so great that I don’t hand something in on time purely because I am so stressed there is an end date in sight. It’s not that I couldn’t have met the deadline. Rather, it’s that my anxiety at giving up control, of handing something in, will take over and I will become paralysed, taken over by autistic inertia, unable to finish my task and unable to start anything else. I stay stuck. It’s only when someone – occasionally Tim, but often someone outside – makes me face up to the fact I need to take action quickly that I do.
I like things to go smoothly, because the vast majority of my socializing is done within my work setting, often on the phone. It matters hugely to me that no one is upset, so often I will find myself agreeing to take on unpaid work or go outside the remit of a contract simply to ensure no feathers are ruffled.
I have always felt unworthy and as if, at any minute, I will be found out. I’ve learned, however, that many neurotypical women feel this way too; it’s not just an issue for autistic women, although we seem to feel it particularly keenly. In part, for me at least, it is anchored in my feeling of not being a grown-up, a proper person. But as I need to pay the bills I have learned to keep pretending.
All in all, though, the positives of my work life outweigh the negatives. I am always so grateful I don’t have to suffer as I did when I worked in offices. That I have the freedom for most of the day to be myself.
Slowly I have begun to be honest about my autism with the people I work with. I’ve told my clients and will often tell someone I am interviewing if it feels relevant. I’ve learned that, by being honest, others feel more able to open up about their own issues or differences.
CHAPTER SEVEN
April 2016
I am exhausted. It feels relentless. My body is broken. My brain is broken. I have had enough. I don’t want to die. I just want it all to stop. I want to stop being. I want to have not been born. I want to not be me. I want to be someone else. I try to remember what M has said about trying to stay in the moment and not spin out about what might happen. Her words on allowing myself to feel vulnerable whirl around my head.
‘I want to go home,’ I say out loud, to the empty room. I press the buzzer by my bed. The wait seems interminable. I twirl my hair around my finger. I haven’t eaten for more than twenty-four hours and am desperate for some water.
‘All OK?’ a cheery healthcare assistant asks, as she pops her head round the door to my room.
‘Am I allowed a drink?’ My voice is croaky from not having spoken for a while. I can go for hours without speaking in a hospital setting. I partially shut down and become selectively mute.
‘Best not,’ she says, keen to be doing something else. ‘They’re going to come and take you down to theatre soon.’
‘When is soon? Do you mean ten minutes or an hour?’
‘Well, that depends.’ She retreats a little further out of the door. Tim considers interjecting in some way but doesn’t.
‘What does it depend on? I need you to be exact. I can’t cope with uncertainty.’
‘I’ll go and see,’ she says. I see her eyes harden as she writes me off as trouble.
I know this means I won’t see her again and I feel the hospital walls shrink in on me a little.
I look for a distraction and try to listen to an audiobook on my iPad. I wish I had my headphones, but because I came straight here from seeing my consultant I don’t have all the things I need to keep me calm. I want Tim to go home and get them, but he’s insisting on staying until I go down to theatre. I would rather have my headphones, scarf, pyjamas and books than him, but it feels unkind to say so. In situations like this, he often takes on the role of my unofficial translator. He anticipates what I need and tries to negotiate it for me.
When we first arrived we were shepherded into a waiting room. The local radio station was pumping out a mix of cheery chat and nondescript music. Every chair was filled with patients and friends or family. A dozen conversations were competing for attention in my ears and in my head. I couldn’t screen them out. I hovered on the edge of an implosion.
‘We must ring your mum,’ an older woman was saying to a man holding a piece of bloodied gauze to his head.
‘It can’t be much longer,’ a man said to a woman in a wheelchair who was wearing a floral nightdress that exposed legs riddled with varicose veins. I found them strangely fascinating and had to try hard not to stare.
Bleeps and buzzers were sounding. Noises were merging. I hear each individual sound, all the time, wherever I am and, like a too-tight shoe that rubs, the pain grows the longer I am exposed to them. Heels tap-tap-tapped on the floor and an overhead light flickered and buzzed in unison. I needed silence. I wanted to be home. I needed to be out of there.
‘I’m going outside for a cigarette,’ I told Tim.
‘What if they call you?’
‘I don’t care. I can’t stay in this room.’
Tim knew I would leave if he didn’t do something, so he walked over to the nurses’ station about thirty feet from the room we were in. I couldn’t hear exactly what he was saying, but I heard snatches. Needs quiet. Autistic. Meltdown. Thank you.
He came back. ‘Come on,’ he said, picking up my handbag, ‘they say we can wait somewhere quieter.’ That somewhere is the room I’m in now, where the sounds are more muted but my nose is assaulted by the smell of antiseptic.
The healthcare assistant comes back and finds me alone. Tim has gone to get some fresh air for a moment. She taps me on the arm. ‘I need you to have a shower with this.’ She hands me a bottle of medical body wash. ‘And you’ll need to pop these on.’ She puts a hospital gown and a pair of bottle-green compression stockings on the bed.
I can’t make the shower the right temperature. It’s either too hot or too cold. I can feel the prickly sensation that precedes a meltdown. I can’t do this. I want to go home. I fight with the plastic seal on the bottle of body wash. Eventually it yields, scratching my finger as it does so. I sniff the contents. Hospital. Harsh, chemical and frightening.
The throbbing pain from my abscess becomes sharper the longer I stand. I hate my life. I hear a door shut hard and Tim calls my name.
‘I’m in the shower,’ I say. I have wedged the door slightly open with a towel.
Tim opens the door and looks at me for a minute. I have given up on the shower and am trying to struggle into the compression stockings.
‘Phwoar!’ he laughs. He is holding a half-eaten Mars bar and a bottle of Evian. It irritates me. A lot. Hunger is one of my main meltdown triggers.
‘Fuck off!’
‘That’s not very nice.’
‘Go away.’ I say it louder this time, but he ignores me and stands at the window, gazing at the sun setting over the hospital buildings.
Eventually, I win the stockings battle and put the gown on. I can’t tie it so ask Tim to help.
‘I’m really sorry about this,’ I say, a little calmer.
There’s a knock on the door and three people come in. They are wearing different-colour scrubs.
‘I’ve come to give you an ECG,’ a smiley woman wearing burgundy says. ‘Your notes say you have Ehlers-Danlos syndrome, so we’ve looked it up and we’re worried that the sticky pads might damage your skin.’