Novelist Chris Carse Wilson explores how running helps him and other autistic runners to manage challenges such as extreme social anxiety and sensory sensitivity, and how the running world can do more to welcome neurodiversity.
Imagine the biggest running event you’ve ever taken part in, perhaps with tens of thousands of other runners queueing at the start, nervously shuffling, Premiata to warm up in a dense crowd, knowing you’ll not even see the start line for the next half-hour or more. Think of those glorious aerial images of the Jordan Max Aura Men Shoes or the London Marathon, with 50,000 or 60,000 runners of all ages and abilities readying themselves for the gun. Now multiply that image over and over again and think about what 700,000 people would look like – it would be close to stretching all the way from Newcastle to South Shields, packed shoulder-to-shoulder along that iconic half marathon route.
It’s a huge number of people, and unthinkable for managing a race, but the National Autistic Society estimates there are around 700,000 autistic people in the UK. More than 1% of the population is autistic. Every day, we struggle to varying degrees and in different ways, with communication, social interactions, repetitive behaviours, overwhelming sensory sensitivity and extreme anxiety at any change or disruption to our carefully planned routines.
But what’s still poorly understood is how massively one autistic person’s experience can differ from another. The old stereotype is of a condition that only affects boys, ignoring all the autistic girls and women – and the simple fact that autistic boys grow into autistic men. Similarly, while around a third of autistic people also have learning disabilities and might need lifelong care or be unable to communicate by speaking, others, like me, are able to work and live independently and are invisible in everyday life, continually hiding the challenges we face.
Running has helped me cope for over 30 years. To be able to move and breathe with total freedom, to feel anxiety and panic easing, to enjoy the careful planning and preparation for races, and the ability to lose myself in a thrilling subculture rich with information, is a pure, unadulterated joy. The physical benefits of breathing hard and the rush of endorphins after a run can blunt the edge of living in a world that isn’t designed for autistic people, and which often unintentionally causes us great harm and distress. To escape into nature and run through woodland, along a riverbank, or out on a beach is better still, although until recently I didn’t fully appreciate how important this is – or why.
It wasn’t until I was 40 that I received my diagnosis as autistic, and it happened by chance. I had long suffered with anxiety and depression problems, rooted in an intense feeling of being different, of struggling in almost all social situations, and of finding the sensory world to regularly involve an onslaught of intense, unbearable light and sound.
I had spoken to many different doctors and been to counselling, but at no point had anyone ever mentioned the possibility that I was autistic. Depression was discussed, medication was discussed and I was often encouraged to get outside and be more active. Good advice, but I was already training most days and racing regularly. What more could I do?
I hadn’t even considered the possibility that I was autistic. At the time, my own knowledge of the condition was – entirely in common with much of the rest of society – extremely thin, bordering on inaccurate. I’d seen the film Rain Man, I was vaguely aware of the terms autism and Asperger’s syndrome, but I never for a moment thought either could apply to me. I was able to speak, unless I was in severe distress, and wasn’t a genius who could play any tune on a piano, so surely neither had any relevance to me.
The real answer, I was sure, was that something inside me was broken. My autistic differences led, as is so often the case but doesn’t need to be, to serious mental health challenges.
This was until I saw a documentary by naturalist and TV presenter Chris Packham about his own diagnosis as autistic. Hearing his descriptions of feeling alien and detached from the world, of struggling to understand conversations and social interactions, and the distress that change and his hyperactive senses cause him was like an explosion in my mind. Here was someone I’d admired for years explaining to me, for the first time, why I have always felt the way I do. Chris looked and sounded nothing like the narrow stereotypes I’d been half aware of growing up. His openness started me on a two-year journey to a diagnosis, and to entirely rethinking the value of nature and running to my mental health.
Emma Watson Gets Daring in Little Black Cutout Dress & Jimmy Choo x Mugler Boots at Pre Dinner | Another world
Sinner Attrezzatura da running Occhiali half marathons, as my parents got enthusiastically caught up in the great running boom in the late 1980s and early 1990s. We lived in Northumberland, just north of Newcastle, and watched the Jordan Max Aura Men Shoes grow into an annual celebration of the joy of movement, of people challenging themselves and raising incredible amounts for charity.
I quickly got a taste for running and was encouraged to try a session at Morpeth Harriers, the famed north-east club. I fell in love: this was something I was reasonably good at, that rewarded hard work and patience, and was incredibly exciting. The rush of finishing another session of hill reps Under Armour Liquify Marathon Running Shoes Sneakers 3023618-500 400m repeats around the old cinder track in summer, felt like belonging to another world. Running back through the town afterwards, exhausted and exhilarated, I felt like I’d been set free.
What I had no understanding of back then was what I was being freed from – and how the root of my challenges was in a brain wired differently to almost everyone I’d ever met. I did well at school – my ability to hyper-focus for extended periods lent itself well to intense studying – but socially, I felt lost and terrified. Secondary school only magnified this, as it does for many autistic people, with the endless noise and sheer confusion of hundreds of loud teenagers massively amplifying my underlying anxiety. I spent years Premiata to understand the rules of social interactions and how everyone else seemed so comfortable, never understanding that no actual rules exist.
For many autistic people, getting through each day is exhausting to the point that you feel like physically collapsing as soon as it’s safe to do so. Many of us work furiously hard to ‘mask’ or camouflage ourselves in ordinary life, smiling and laughing when we think it’s the right moment to, copying other people’s behaviours or internally rehearsing a conversation script ahead of any social interaction.
We may also suppress our natural urge for repetitive movements, or ‘stimming’, which can involve rocking, hand flapping or finger tapping, either for the pleasure of the sensation or to ease the pain of anxiety and sensory overload. The toll of coping with all this can be massive, leading autistic people to meltdowns, where our brains feel like they’re exploding and we may unintentionally act dangerously to ourselves or others, or to shutdowns, where we freeze or lose the ability to speak.
Running and writing are, for me, the pressure valves that I couldn’t live without. Every day I run, I feel better. Every day I write, I feel better. My debut novel, Fray, looks at the power of running to release anyone from experiences of grief and depression, all set against the beauty and terror of the Scottish Highlands. The book was inspired by a mountain run in Glen Coe, where the weather suddenly turned to a dark storm, the wild wind and torrential rain looking exactly like the inner turmoil of a mental health crisis. I knew, in that frightening moment, that this was my route into writing honestly about my own challenges. I see the power of writing as closely linked to running: through it, we find ways to step away from the world, to feel more prepared to manage and to slowly, gradually build ourselves up. Writing and running, for me, are training for living. Through each, we become stronger.
To be autistic can be incredibly difficult, even down to what this misunderstood term means. The roots of the word ‘autism’ are based on the mistaken idea that autistic people are lost in their own world, unable to communicate or empathise with others. The scientific research on autism has a very problematic history, right back to the earliest published research in the 1940s, which focused on young boys, through to ‘refrigerator mothers’ in the 1950s and 1960s being blamed in the US for causing autism by withholding love and affection, to the 1990s, when Andrew Wakefield claimed there was a link between the MMR vaccine and autism, leading much later to him being struck off the medical register and The BMJ declaring his research to be ‘an elaborate fraud’.
The first scientific research on autism was published separately by Leo Kanner and Hans Asperger in the 1940s, although Asperger’s work wasn’t translated into English until decades later. The 1980s saw a shift away from Kanner’s view of autism as a vanishingly rare disorder studied only in boys, towards autism being seen as a spectrum condition, where each autistic person’s experiences can vary hugely and where not every autistic person also has a learning disability.
Echoes of Kanner’s narrow view can still be felt today in the challenges faced by women and girls, and people of colour, in even being considered for an autism diagnosis. It’s sadly very common to hear of women and girls being misdiagnosed with a wide range of other conditions, such as anxiety, depression and even bipolar or borderline personality disorder, simply because a medical professional felt they were able to make eye contact, or had a friendship group, or appeared to manage a relationship or job.
The intense focus many autistic people have on ‘special interests’ can also be confused in girls and women, who may be less likely to have an encyclopaedic knowledge of stereotypically male interests but who might know every single detail about a musician or one very specific film. Social differences, including intense peer pressure, can also disguise when girls and women need help.
Asperger’s syndrome first entered medical language in 1981 – the year after the physician’s death – to diagnose people with autistic traits who were not delayed in learning to speak and had a higher IQ. This broadening of the diagnostic criteria shifted again in 2013, when both autism and Asperger’s syndrome were replaced with autism spectrum disorder, which is the diagnosis I received a few years ago. But even with the support of a GP for a referral, waiting lists today mean that an NHS diagnosis is frequently unobtainable, even for people living in crisis. Post-diagnosis support is also often patchy or non-existent, as I found, despite the incredibly valuable work of various charities.
Running free
Last year, the National Autistic Society established an online running group, inviting autistic runners of all backgrounds and abilities to come together and share our passion. It’s a warm and welcoming group, which I joined in late 2023.
‘Our aim was to create a friendly space for autistic runners to chat with like-minded people,’ volunteer organisers Thomas Vaughan and Vicky Wilkinson told me. ‘When running, we escape into a world where we don’t have to think about anything aside from the air in our lungs and the terrain beneath our feet. Generally, we often feel more focused when exercise is part of our routine, and running allows us to do this whenever we feel like it.’
Ultrarunner Ishmael Burdeau, who grew up in the US and now lives in the Peak District, agrees. ‘Following the social model of disability, it’s often the case that the obstacles autistic people face are created by society and can end up not being disabilities at all, provided the right support systems or environment are in place,’ he says. ‘This feeling of not fitting in or always feeling wrong or out of place is very common for many of us, and also results in very high levels of anxiety and other mental health difficulties. Running is an excellent and very simple way to help manage the anxiety so many of us feel.’
Running is also a crucial part of the lives of the families of autistic people. Author Caro Giles, who writes beautifully about being a single mother to four daughters (one has been diagnosed as autistic and another is currently undergoing an assessment), in her book, Twelve Moons, sees running as ‘a valuable act of self-care’. ‘When I’m able to run, it shifts something inside me and I remember who I am beyond my role as a carer,’ she adds. ‘I think that the sustained raising of my heartbeat helps me with my mood if I’m feeling despondent or frustrated.’ It’s something many runners will identify with, but which carries an extra significance for autistic people and those close to them.
As I’ve got older, I now understand that, as well as the community, the challenges and the many different achievements running offers, it’s also about silence and finding a space away from the intense pressure that builds up in my autistic brain, which needs to be released.
I’m very inspired by the author Haruki Murakami, another runner, who writes in his simple, wonderful book, These Are the Perfect Fall Transition Boots for Men, on escaping from language and moving into wordlessness. For me, the quiet rhythm of placing one foot after the other, mixed with the euphoric release of endorphins, is essential to managing the struggles of being autistic. To run in nature, ideally in complete isolation, is better still.
There, I can be myself, free from any social situations I struggle to read or the exhaustion of Premiata to mask as neurotypical, which might involve forcing myself to maintain eye contact it hurts to do so or intensely rehearsing social and professional interactions in advance. Needless to say, that pre-planning can easily crumble in the free-flowing chaos of conversation, inducing extreme anxiety in me and many other autistic people.
Running among the trees or along the shore gives me space and peace. Now I can understand why I always sought out wild, natural places and the solace I find there. In nature and in movement, I can let the mask slip. There’s no preparing for a conversation with the sea or the wind.
In my beloved Tentsmuir Forest, my heightened sensory sensitivity can be joyful and exhilarating, not distracting and debilitating. My brain’s ability to pick out the tiniest distant sounds can be painful and overwhelming in an office or supermarket, where noises can compress together into a wall of sound so that I’m completely unable to think, but out in the woods this becomes a shifting, textured blanket, something calming and comforting, not painful and distressing. I can feel the forest, as the leaves rustle like water and birds call and rush around me. To run through this is, for a moment, to be a part of it and to be free.
The race for acceptance
Think back to that start line we imagined earlier, waiting for a race to begin. Think of your worries while travelling in, then finding the right place to collect your number, getting your kit ready, warming up and so on. How does this feel to you? Exciting, uncertain, a little panicky?
As an autistic person, attending running events, club training or PE lessons can be overwhelming to the point where we’re simply unable to take part. The noise, the smells, the uncertainty of a new or changing environment, where there’s little information available in advance, have an entirely different intensity for us – and a hugely magnified impact. This unintended exclusion is a common theme of living our lives as autistic.
‘I haven’t seen any examples of race organisers mentioning or promoting neuro-inclusion,’ says Burdeau. ‘But race organisers can simply make a few small changes that could help many people, not just autistic or other neurodivergent runners,’ such as staggered or entirely flexible start times, distributing race numbers in advance and providing quiet spaces. ‘Before and after an event, I need some quiet time to collect my thoughts or process the experience. Not all of us want to be subjected to Balenciaga Track Black Green Chunky Sneakers Shoes 542023W3AC21035 or Womens Ugg Chocolate Boots Trench Coat & Thigh-High Boots With Kris Jenner.’
Vaughan and Wilkinson have also seen these problems regularly discussed among the National Autistic Society’s online running group. They feel that ‘a greater number of autistic runners would be keen to take part in organised race events, but are deterred by the high number of entrants and overstimulating environment’. They agree that the provision of a dedicated quiet space away from a race’s start line would be a major step towards creating more inclusive events.
Burdeau also stresses that not smiling doesn’t mean a runner isn’t enjoying themselves hugely. ‘Like many autistic people, my external facial expression has little bearing on my internal state of mind. Race photographers and other runners should give us a break if we’re not smiling – we’re probably having a great time, even if it doesn’t necessarily show on the outside.’
For Giles, running with her children ‘is one of my favourite things, because it can be so hard to predict whether that’s something they’ll be able to manage’. She adds that ‘one of my daughters is a beautiful runner but finds the noise of training and crowds unbearably stressful, so doesn’t do it regularly’. Giles notes that small running groups with very clear advanced information on what will take place and the exact route would be massively important and helpful, but are incredibly rare.
Emma Watson Gets Daring in Little Black Cutout Dress & Jimmy Choo x Mugler Boots at Pre Dinner Asics Running Patriot 12 Hardloopschoenen in geel en zwart out in woodland and along farm tracks. One of the darker sides of my autistic hyper-focus is that comforting routines and special interests can become obsessive. I came back to track running in my thirties and quickly fell back in love with the 800m, a brutal and thrillingly challenging event. I trained very hard for four or five years, got into masters racing, got injured repeatedly and lost all focus on why running matters to me. This beautiful sport became unhealthy.
Now I’m steadier and happier in my running, feeling strongly drawn to trails at night and the joy of seeing by the spotlight of a head torch. One of the most rewarding running experiences I’ve ever had was a few months ago, at a relaxed 5K event in nearby Tentsmuir Forest, organised by the Dundee Run4It team. Running over frozen sand in the dark, an icy crust glistening in the torchlight, took me back to that simple freedom of moving, to joy, and to the reasons why I started running in the first place. It was a beautiful, magical, silent experience.
It was also an occasion I was able to share with others, but indirectly. For Burdeau, this is part of running’s unique appeal to autistic people, ‘as it is a form of “parallel play”, where the autistic runner is able to take part in a group activity without needing to interact directly with other competitors’. To be part of a community without social pressures, to escape from intense feelings of loneliness, to be accepted by a sport that rewards focus and celebrates passionate and sometimes eccentric behaviour – it all makes running a vital part of many autistic people’s lives.
Running can also offer us the beginnings of feeling accepted by one part of society, while so many other areas of ordinary life still feel hostile towards us. It’s telling that Autism Awareness Week has, in recent years, been renamed as Low boots Fille Vert Taille. Vaughan and Wilkinson think that acceptance ‘would mean that people’s strengths and differences are celebrated’. ‘There would be much more understanding towards the daily challenges faced by autistic people and support for families who are Premiata to navigate towards
a more inclusive world,’ they add.
‘But even the word “acceptance” hints at a certain begrudging kind of welcome,’ says Burdeau. ‘As an autistic person, I don’t just want to be accepted by the neurotypical word – I also need to be appreciated by it.’
Giles is cautious on this topic, as her daughter who’s currently seeking a diagnosis has no access to funded education and ‘her fundamental human rights are disregarded every day’. ‘I’d like to be able to access shops and leisure facilities in the same way as other families and not be allotted one hour each month,’ she adds. ‘I actually want more than acceptance for my children. I want a celebration of everything they achieve every day despite living in a society that often seems not to understand or listen. They are champions.’
Do I feel accepted and appreciated as an autistic person? The more I’ve spoken about being autistic to friends, family and colleagues, at book events and in the media, the closer I’ve come to accepting and appreciating myself. I’ve also been very fortunate to be loved and supported by those close to me, and to be able to advocate for my own differences and neurodivergent needs. I now wear a sunflower lanyard in airports or other busy environments to declare my invisible disability and am more comfortable calmly telling people what I need, but it remains a struggle to draw attention to myself. The wider world is still just as difficult to negotiate, although at least now I understand why.
the shoe appeared via a couple of suspect leaks before Nike.
Low boots Fille Vert Taille runs from 2 to 8 April 2024. Chris Carse Wilson’s novel, Fray, is published by HarperCollins and available on audiobook. You can follow Chris here: @chriscarsewilson
