by Laura James
Tim joins us carrying biscuits and cartons of juice and we board the train. The sweet smells of steam, wood and aged upholstery fill the air. It’s as if we have travelled back in time, back to The Railway Children, Carrie’s War or The Children of Green Knowe. The girls love it too. It is romantic, old-fashioned and reminiscent of the books we share a love of.
We make our way down the carriage and find our seats. There’s a flurry of coats being unzipped and drinks being handed out. There is a loud clunk as the train lumbers into life, slowly moving forward, then gradually building up a head of steam.
The view from the train as it hugs the North Norfolk coastline provides a new perspective on a familiar world. The beaches where we build sandcastles for Ziggy to knock down in his clumsy exuberance. The ice-cream shop where the girls order sensible ice lollies and Jack and Toby load cones with four flavours and mountains of sprinkles and marshmallow chunks. The fifty-metre-high viewing platform where Toby rushes to the top to see if he can see our house and where Jack slowly climbs up, stopping to check the height from the ground at every step.
The view is timeless – trees, a windmill, a glimpse of the sea. I wonder what it must have been like when this was a proper train route, rather than one for children and tourists. I try to imagine living in the 1950s. I think life would be easier. I think maybe I would have liked being a housewife with nothing to think of but domesticity. I am not great at cleaning, but I do love cooking and am in the middle of writing a cookery book. I wish it were possible actually to travel back in time. I have been reading about time slips and revisiting childhood books such as Come Back Lucy and Charlotte Sometimes. How amazing it would be to stray into the wrong time. How liberating. I lose myself for a moment in the possibility of it all.
The children are sharing a table of four, Tim and I sitting on the other side of the aisle. Jack gets up from his seat and puts his head in my lap. I begin to stroke it, in time with the rhythm of the train. His hair feels slightly coarser than it did a year or so ago. It is a sign he is growing up. I feel a pang. I like the baby days best.
The train lets out a loud choo-choo and clouds of steam drift past the window.
‘Ghosts,’ Jack cries, excitement in his voice. ‘Look! Ghosts!’
‘Look, Diddut, we’re higher than the trees,’ Toby shouts, holding his stuffed rabbit to the window. ‘We’re flying.’
Lucie says something I don’t catch and Toby starts giggling. It’s a deep, throaty chuckle and it is infectious. Jack leaps up and goes back to his seat, afraid he is missing out on something.
Tatti’s face is the picture of concentration as she bends over her colouring book, trying hard to keep within the lines even though the speed of the train is causing her to bounce in her seat. Lucie gives Toby an indulgent look (as if he is being so childish) and returns to her Game Boy.
A certain peace settles, the children lost in their own worlds. The gentle, reassuring rumble of the train providing a hypnotic soundtrack. Tim and I talk about plans for the weekend. Tonight we will take the children for fish and chips on the pier. Tomorrow we will go for a walk in the country park.
Then it will be Monday and back to work for us and school for the children. Back to the real world. I feel a jolt of anxiety shoot through me. I want to stay insulated by the cosy feeling of the holidays. I don’t want to go back to reality.
As if he has read my mind, Jack leans across the aisle, his eyes watery.
‘I don’t want to go to school on Monday.’
‘OK,’ I say. ‘You don’t have to.’
Tim turns his gaze away from the ribbons of sand and sea skipping past.
‘You can’t keep letting them not go to school, just because they don’t fancy it.’ His tone is hushed but harsh.
‘He’s six,’ I reply. ‘What’s he going to miss? Trigonometry?’
‘That’s not the point. You can’t keep giving in to them and allowing them to get their own way all the time.’
‘Why not?’ I say, meaning it.
I don’t understand why people impose so many rules on their children. I hated the lack of control I felt throughout my childhood and I don’t want to impose it on the people I love most. They seem too small, too fragile to have to cope with pain and disappointment. I find it agonizing to watch their faces crease with sadness or to see tears roll down their cheeks.
‘You’re being ridiculous,’ Tim replies, but not unkindly.
The children watch us with interest. Not upset by the exchange. Interested.
‘I didn’t learn anything at school,’ I say airily.
‘Well everyone’s not you. We have a responsibility. A legal responsibility, but also a responsibility as parents.’
I hate having to force the children to go to school, to do something I found almost unbearable. Jack likes it least and is the one who most often tries to wheedle a day off. I don’t mind at all. I understand.
We pass a field of sheep and my reverie is interrupted by the children chorusing a loud baaah! Lucie does a very good impression of a sheep and the boys make her do it again and again. Tim and I join in until our animal noises fill the carriage and the tension drifts off into the steam.
‘I just hate forcing them to do something they don’t want to,’ I say.
‘OK,’ he says, with a sigh of resignation, ‘but this is the last time.’
CHAPTER NINE
July 2016
The Brexit vote has changed things at home. For the first time in my life I am worried I may be properly depressed. I have sunk into a dark space and don’t know how to climb out. The days stretch into one another and I am tearful and panicky. I can’t understand how the rest of the world is functioning.
Tim is at the end of his tether and has imposed a moratorium on discussing politics. He says my obsession – my ceaseless questioning, my endless time spent on social media and my unending need to debate every aspect of the referendum vote and its likely effects on our future – is causing friction between us. I think he believes that if he won’t engage on the subject I’ll forget about it.
I will walk into a room and say something like, ‘It looks as if Andrea Leadsom is going to step out of the leadership contest,’ and he jokingly holds up his hand like a traffic policeman. He does it with affection, but he has had enough and the stress is showing. He is exhausted, worn down, slightly erased somehow.
I don’t forget about it. I find other people to talk to, online, late into the night. It makes me feel separate from him. I focus on looking back on my life to try to make sense of where I am now. And forward into a future in a country I no longer recognize as my own. I ignore all that is happening now, in the present. Tim can only exist in the present. The past is gone for him and the future too distant to contemplate. The gulf between us seems vast.
Marriage is hard. Alexandre Dumas wrote: The chain of marriage is so heavy that it takes two to bear it; sometimes three. For me, it is more like thirty. I need a number of people to talk and listen to me as I try to make sense of the world. I collect people online, those willing to analyse, debate, discuss and console. I like these types of friendship. They don’t ask too much of me. There’s a shared interest, but if one of us wanders off and on to something new it really doesn’t matter. There are plenty of other people willing to talk.
I start visiting pro-Brexit pages and this leads me into the murky world of far right, alt-right and extremist groups online. Their words of hate and bigotry are abhorrent, their spelling and grammar those of a five-year-old. Many are old ladies. It shocks me. Rocks my belief that ultimately we are all good people, just doing our best to get by. I feel obliged to step in, to post comments whenever I see vile racism and ignorant untruths.
Tony Attwood believes there is logic behind my intense interest when I tell him I need to understand the points of view of the most hardcore Leave voters. He told me: ‘You’ve hit the nail on the head. You’re trying to understand the motives of people and – if you’re not good at get
ting into the minds of people and understanding them – then the special interest is a way of exploring your concern.
‘All special interests serve a function. It may be a sense of self-worth or a sense of identity because, if you’re good at Minecraft, then you’re valuable at school. And sometimes the interest can become a source of employment. There are a variety of reasons why the special interest is valuable for emotion management and also emotional understanding of the thoughts and feelings of other people. It is a thought blocker, a refresher. It gives you a sense of comfort and enjoyment and it’s what I call an intellectual orgasm.
‘I think in many ways neurotypicals don’t appreciate or need an interest, so they assume an autistic person doesn’t need one. But I have an issue when parents focus on special interests as discipline. If the child is not doing what the parents want them to, they will punish the child by taking away a special interest. I don’t call that punishment. I call it revenge. When they do that they are not giving the child a replacement for the value of that interest in their life and that’s counterproductive.
‘When you look at special interests, there are many reasons for them. First of all, the person really enjoys and is comforted by facts and information. Facts and information are comforting, but they also build up your own self-esteem and sense of self-worth. If you’re not good socially and you’re not good at sport, for example, the one thing you can be good at is knowledge.’
Brexit is an obsession, but unlike any other I’ve ever had. It could not be described as a special interest. This is negative. It is destructive. It is futile and it is dangerous. I am bombarded by threats from men whose behaviour raises so many red flags it practically turns the screen of my phone crimson.
I could write here the things I have read, but I don’t want to. They require a trigger warning. These people don’t deserve the airtime. Women are threatened and abused online every day. It is a sad indictment of where we are now. I was never afraid but I was shocked to my core that people think the way they do.
Somehow I keep going, trying to talk sense into this weird, disparate bunch of people whose hatred is corrosive. Late into the night I read things that make me want to weep with anger and frustration. There’s a line from Aaron Sorkin’s TV drama The Newsroom that talks of speaking truth to stupid. It’s what I’m doing but I just can’t stop.
I text a friend and give him a watered-down version of a recent hate-filled comment. It’s pointless, he replies. You’ll never change their minds.
I have such a problem with people spouting opinion as fact. It is an almost physical pain. Facts are so important. Facts are my friends. I have been collecting them since I was at primary school. They make me feel safe. A fact is irrefutable. It cannot be challenged if there’s enough evidence to back it up. Except that these people do challenge.
They believe in conspiracy theories. Any story they don’t like has been invented by a liberal media elite. Any they support are utterly true, however unlikely they sound. It hurts my head. Some of my friends see my comments on Facebook and follow me into these groups. They try to make sense of it too. When they can’t, they quickly leave and block the page. I wish I could do that. I wish I could accept that some people think differently to me, but there’s a small part of my brain that believes if you throw enough facts at someone they will change their view, however firmly held.
The need to convince someone they are wrong – when one has irrefutable evidence – is not an exclusively autistic trait. Many feel this way, but autistic people tend to try for longer than the vast majority of neurotypical people would.
A friend tells me how every year she and her family would visit the same B&B in rural Ireland. The owner’s autistic son had a special interest in trains. Each year, he would have collected more images and information and would be at the door, waiting for them with his folder of evidence in hand. She still occasionally goes back and it’s still happening, more than twenty years later. The boy, now a man, feels compelled to share every aspect of his interest. I’m like this with facts. I feel compelled to tell people when they have got something factually incorrect or, worse still, when they are sharing articles with absolutely no basis in truth.
I have never learned how to break an obsession. I have never had to. In most cases a new one comes along, takes over from the last and replaces it. When we were in our twenties, some of my friends got over one boyfriend by getting under another. I’m like this with obsessions. The previous one needs a new one to replace it. Otherwise it will just go on.
I want so much to stop worrying about the future, about the divide in the country and about the fact that no one seems to have a bloody clue what’s going on. I am trying to stay away from the far-right groups. They are making me unhappy, unproductive and frightened. Like a dysfunctional relationship, they are difficult to quit.
I decide to try the Twelve Steps one-day-at-a-time approach, but working in blocks of minutes rather than days. I resolve to finish a feature before I am ‘allowed’ to go back online. I’ll tell myself to pop out and get a coffee, instead of logging back on to Facebook. I will take baths, message someone nice, eat chocolate. Anything to keep away from the dark corners of the internet where it’s impossible to find any alternative to hate.
CHAPTER TEN
August 2016
A new focus creeps into my life. A new question forms in my mind. Why am I autistic? It’s a complicated and controversial subject. Many autistic adults believe that too much investigation into the causes of autism will, ultimately, lead to eugenics. If science discovers the genes that cause autism, screening tests will become available and parents may be advised to end pregnancies. Essentially autistic people could be weeded out of society.
This would be a terrifying outcome. Autistic people bring so much to the world. We are scientists and artists, writers and doctors. We are gardeners and primary school teachers. Council workers and cleaners. But more than this, we are human with the same hopes and fears and dreams and desires as everyone else.
Instead of an endless search for a cause, many autistic people feel – rightly, I believe – that money should be spent on finding ways to support children and adults on the spectrum. Education and employment should be made more accessible and inclusive.
While I wholeheartedly agree with all of this, something in my make-up means I need answers to everything. I don’t want to know why autism occurs per se. I just want to know where my autism began, how it has shaped my life and what would have been different had I been born neurotypical.
I talk to Steve Silberman. His book, Neurotribes, is the most comprehensive work on the subject. He wrote a piece on autism for Wired magazine and became massively interested. Although he is not on the spectrum himself, he gave over five years of his life to researching and writing the book.
I ask what fired his interest.
‘I saw the inability to answer the question as to why the number of diagnoses has spiked so dramatically,’ he says, ‘starting in the early 1990s. I saw autism perpetually described in the media as a mystery, an enigma, a puzzle. That lack of explanation was causing a tremendous amount of human suffering. I saw there was a panorama of human suffering with everyone asking why. What could be more terrifying for parents than that autism was an epidemic?’
This is an interesting point. Parents can, understandably, be terrified at the idea of their child being diagnosed with autism when there is so much misinformation out there. With changes in the diagnostic criteria, better screening and more awareness, rates of diagnosis are thankfully going up. That doesn’t mean there are more autistic people than ever, but that more are being noticed and getting the support they deserve.
Steve Silberman’s book and subsequent interviews have done a lot to address the positive side of autism, as well as to debunk many of the myths.
He adds: ‘There are millions of memes on the internet showing the dramatic rise in diagnosis and those memes have been perpetuated by groups. The most
trusted sources of information in the parent community are calling autism not just an epidemic, but an epidemic that poses a greater threat to children than paediatric AIDS or diabetes. They literally used that. They literally used paediatric AIDs, cancer and diabetes as the equivalent or worse.
‘I wanted to correct the misconception that autism is an epidemic. Another was that autistic people are less than human. That they don’t experience the whole range of human emotions, human hopes, human wishes and desires. In earlier descriptions, autistic people are nothing but a list of impairments and deficits and that was something I wanted to put right. I could not possibly write about autistic people in the shallow or stereotypical ways that we see so much of. It was so obvious to me that they are deep and complicated, nuanced and passionate and funny.’
While there are so many more people getting diagnosed, it is still harder for women and girls to get the attention they deserve. According to the UK’s National Autistic Society, various studies – together with anecdotal evidence – have arrived at men/women ratios ranging from 2:1 to 16:1.
Sarah Wild, head of Limpsfield Grange, agrees it’s an issue. She told me: ‘Making people aware that girls can have autism is still a massive challenge. People still judge girls by the male criteria, so it feels as if they doubly don’t fit in. They don’t fit into neurotypical norms, but they also don’t fit into everyone else’s construct of what autism is.
‘We place a strong emphasis on staying well, long term. The girls here are amazing and I think they can do anything they want to do. The one thing that stops them is life becoming a bit unpredictable, which can sometimes make them unwell. There’s not very much awareness of female autism and there is even less awareness of female autism plus mental health difficulties. I think they don’t get the right support.’