On a balmy summer morning in August 2016, the British writer Katherine May set out to walk the 630 miles of the South West Coast Path. Earlier that year, she’d been diagnosed with Autism Spectrum Disorder, and had in the months leading up to this moment been trying to wrap her head around what that meant for her now, in adult life. Her experiences that summer came together in a memoir entitled The Electricity of Every Living Thing, and it followed her ramblings over rugged terrain as she navigated the project of re-finding herself somewhere between sea and sky.
This was a journey of understanding, not outrunning. Tingling observations about the landscape are punctuated with moments of clarity and self-realization. “I would not have been so strange in a previous era,” she writes thoughtfully. “In a quieter world, a less hurried one, without the whine of mobile phones and the ceaseless electronic drone of voices from the radio and the TV; without the noisy surges of hand driers and the bleeping of train doors; without the flat plastic unknowable surfaces and the dry-air containment of office life; without pulsing lights and the ceaseless sense of personal availability.”
Sensory sensitivity is a common trait of autism; everyday sights or sounds or situations can be overwhelming, just as May describes here. These words are largely about the discomfort of hearing, but consider all the ways images are involved in this list too; in the things we see on screens, in the adverts and billboards that flicker past us daily, in the jarring omnipresence of flashing lights—they don’t make sound, but they aren’t silent either. The modern presence of photography screams at us sometimes. It’s everywhere, all of the time, and even its distortions are sensory and onomatopoeic: think ‘noise’ and ‘grain’.
Conversely, photography is one of the most powerful forms of visual language—it can say what might otherwise be hard to communicate, and reveal what may not be immediately obvious to the eye. It’s a way of recording information; a repetitive, mechanical medium that can be soothing in its consistencies, and a tool to visualize alternative ways of seeing the world. It’s also a relational tool—a pretext to entering someone else’s world and getting to know them. American photographer Mary Berridge chose the medium for some of these reasons when beginning Visible Spectrum in 2014—a narrative portrait series following the lives of people with autism.
Berridge has personal experience with the autism spectrum, because her son, Graham, was diagnosed with Aspergers at age seven. “I have long been drawn to make portraits in the context of social issues, especially when the issue is misunderstood and stigmatized,” she explains. “Stigma breeds hiding, which breeds more misunderstanding. As one of the mothers involved in my project says, ‘We have so far to go in understanding autism, but the first step is visibility.’”
As explored in a previous essay for LensCulture, there is a dichotomy in the worlds of health and the human condition between ‘visible’ and ‘invisible’ forms of experience, and the effects of autism upon a person’s life can, at times, be ‘invisible’.
“Many people with autism, including my son, can often appear to be neurotypical. It was important for me to show this in my photographs because it goes against the stereotypes of what most people picture when they think of autism,” explains Berridge. “A photographer who doesn’t know a lot about autism might choose to emphasize the more pronounced and visible aspects of it (unusual behaviours, for example) thereby reinforcing negative and simplistic tropes about the condition. Photography enabled me to show that autism might not be what people expect.”
On the other hand, she says, the fact that many people with autism “look normal” can make their life harder because their autism may be affecting in ways that are not readily apparent to others. “A student who struggles with school because of sensory sensitivities and social misunderstandings may be inaccurately labeled as lazy or poorly behaved for example,” she says. Making pictures with her collaborators has been a way for them to take agency over how their stories are told and received, and as an audience we learn to hear them through seeing.
Berridge’s book is due in 2022 and encompasses 40 portraits of neurodiverse people she has met from her local autism community, including her son. Every image is shot in natural light—some against dramatic outdoor backdrops that reinforce how huge the world can seem, others in simple domestic settings. Sometimes, she says, her sitters will do something remarkable. She recalls the story of Chandler, a gregarious young boy who wanted to pose like Mona Lisa for his portrait. “It was wonderfully incongruous,” Berridge smiles, “I just couldn’t see a neurotypical American tween boy making the same connection to another gender, age and century.” Other times, it’s the quieter moments she captures: the subtle way a person moves or smiles, for instance.
Though Berridge believes that photography can do all of this, she also acknowledges the shortcomings of it. “Photographs can’t fully show the complexities of what autism is, and that’s why it’s been important for me to include some form of additional narrative, usually written by the person I am photographing or their guardian, along with the portrait. The images are meant to pique curiosity and provoke questions, while the texts will help answer some of those questions. Both are meant to move viewers emotionally.” In this sense, then, photographs work as communicative prompts.
Documentary practitioner Carol Allen-Storey inclines towards a similar viewpoint: “I believe photographs may not be capable of doing the moral work for us, but they can trigger the process of social consciousness,” she says. Allen-Storey has been making her remarkable, expansive project Defying the Myth since February 2016. In searing black and white images, she chronicles the untold stories and daily lives of parents and guardians caring for children with severe disabilities.
“These parents must decide upon a range of decisions that determine the well-being of their children, from surgery and therapies, to education, employment and housing,” she explains, “but in the face of adversity, they have expressed unconditional love for their children, what they have learnt from them and the joy they bring which helps them to overcome their daily challenges. These moments of resilience and compassion are rarely depicted. In capturing their extraordinary strength, this project challenges the myths surrounding disability and parenthood.”
For each image, she asks everyone how they would like to be photographed and then gives them small prints and asks them to write captions, tear them up and rework them. This process of shared story-telling gives the families agency over how Allen-Storey translates their experiences into the world. An image captured is a moment in time, she says, but what her collaborators write adds further layers to the narrative—to add histories the camera alone can’t encapsulate. In this sense, the text isn’t shoring up the images; they just do different, equally important, work. For both Berridge and Allen-Storey, photography and text together become a tool for intimacy—the beginning of a route into someone else’s worldview.
Two of Allen-Storey’s long-term collaborators have autism. I ask her more about one of them, Kallan, after seeing a picture of his silhouette illuminated against the glass of an aquarium tank. She explains how he was wary of her at first, so by way of drawing him out, they went on expeditions to places like the Natural History Museum because he was fascinated by dinosaurs and underwater wildlife. “For some of the pictures, he wore a dinosaur mask and shark tail,” she recalls. “I learned from him how nature was a driving force for him to communicate, something to relate to, and something that provides a sense of calm.” Allen-Storey’s images can be difficult to look at, precisely because they are tinged with the painful realities these families face. But most importantly they are beautiful too; camera-work at its most intimately resonant.
New York City-based photographer Erin Lefevre also works with the image-text format in her project Liam’s World, in which she documents her brother who has autism. When Lefevre first started her series in 2014, Liam was just 14 years old. “I had just finished my junior year of college and had begun to focus on documentary photography specifically, so when I was back home for the summer I decided to begin photographing my brother as a way to better understand him.” One of the images, depicting Liam stretched out on a bed, a red thread hanging from his hand, won the Wellcome Photography Prize last year. It’s a powerful depiction of one of his stimming—or self-stimulating—behaviours. Underneath it, he wrote, ‘I feel relaxed when I play with string.’
“Autism is not a physical disability, so it’s not necessarily something one could ‘see’ just by looking at Liam,” Lefevre says, echoing the words of Berridge and Allen-Storey. “Some of the interactions and moments in a photo (such as the one of him stimming) may not have been so obvious to viewers who are not familiar with autism. I wanted to make the series more intimate, but it was also really important for me to amplify my brother’s voice throughout the project.” One day, the two of them sat and looked through a folder of pictures on her laptop, and she began to ask Liam if could remember how he felt in each moment, and he began to write captions from there.
Through Liam’s World, Lefevre’s objective is to help uplift her brother, and empower other people on the autism spectrum to speak for themselves. She says she chose the camera as her tool to explore her brother’s autism after learning how impactful visual storytelling can be as a method of sharing and communication. “I think that when we look at photo essays of individuals or communities that relate to larger social issues, they have the potential to go beyond opinion, stereotypes, and politics,” she adds. In these types of projects, we are seeing real people whose lives are impacted by real circumstances, she says, at a level intimate enough to strike a personal chord.
Let’s return for a moment to that quote from Allen-Storey about photography being a social trigger. “When I say that consciousness can be triggered, I don’t mean just in regards to autism, but in the face of all unfathomable forces that are destructive or un-empathetic to the lives of others. Images can say so much about a person—their joys and fears, loneliness or despair—and in all my work, my single challenge is to create awareness and encourage change,” she explains. “For the children and mothers I photographed in Defying the Myth, it was about illustrating their lived experiences, passions and dreams, and providing a platform for these courageous families to share to the wider world what mental and physical demands are made every moment of their lives.”
Allen-Storey has shot numerous series on women’s rights, through pandemics and in the aftermath of war, but this particular project is a long-term personal endeavour, not a commission. She has been making the work for four years now, and sees her collaborators as very intimate friends—bonds grown and nurtured through the act of taking pictures and solidified in shared time, trust and mutual respect.
“When I walk,” writes May in The Electricity of Every Living Thing, in response to the sight of birds of prey on her journey, “I feel as though I acquire the compactness of one of those hawks, the same sense of focused sufficiency. I am lean like them; strong and confident. I am able to draw wings around myself, and to stare past the fussy surface of this world.” This utterly compelling strength of character, mingled with elements of the natural world, recalled Liam’s words to me—the ones he’s scrawled under some of the photographs his sister has taken of him across the years.
‘I was standing on a huge rock in Central Park. I wasn’t afraid at all,’ he writes beneath one, while another reads ‘when the rain started to come down I was OK with it.’ These are some of Lefevre’s favourite pictures from the project. “Spending so much time photographing him has allowed me to have a much more intimate look at his daily life: his moments of happiness, his struggles, his relationships, and his overall journey from his early teenage years to manhood,” she says. “It is one thing to witness this as a sibling, but it is extra special when you have so many photographs that document them progressing through life. One of my favourite things I’ve learned about Liam is his optimistic attitude towards life. Even if things don’t go according to plan, he always chooses to see the best in a situation and he doesn’t let things bother him.”
What it means to be fully feeling, and to inhabit a diagnosis with confidence and self-acceptance, is celebrated in these projects in ways that are both subtle and profound. Each of the photographers here—all women, all drawn to the pursuit of truthful representation—use photography to illustrate the breadth of experience of those living with autism to show there is no conflation of ‘type’ to be found.
Where Allen-Storey works predominantly in the sphere of the socio-political, aiming to highlight the structural struggles as well as the moments of emotional resonance in her sitters’ lives, Berridge attempts to normalize the lived experience of her son and others like him, and Lefevre continues to photograph her brother to understand his world; all ways are crucial to our understanding of how neurodiverse people and their families find meaning in sometimes challenging circumstances.
“The idea of the ever-growing neurodiversity movement proposes that autism is just a different way of being that should be accommodated rather than a disease to be ‘fixed’,” Berridge says. “My son has autism and neither he nor I wish to change that about him. It is part of who he is and he is awesome. Ideally, to me, any treatments or ‘cures’ would target the adverse medical aspects that sometimes accompany the condition, while leaving intact the core identities and ‘out of the box’ neurodiverse perspectives that contribute to and enrich our world.” As with those in the wider disability rights movement, she says, many neurodiversity self-advocates want society to respect their personhood while accommodating and supporting them in ways they say are helpful. “That’s why it’s hugely important we have books and projects made by and with as many autistic people as possible—because we need to broaden our own perspectives.” In other words, it’s pre-formed social biases that need to change.