Rosie Barnes: Understanding Stanley, fourteen years of autism

Understanding Stanley – Looking Through Autism

Understanding Stanley was fourteen years in the making. Its sixty-four colour images mix observed portraits of Barnes's son with photographs that represent autistic characteristics and experiences, and they are supported throughout by quotes and comments from people on the autism spectrum. The book is a photostory rather than an argument, and it was designed to be accessible in a way that specialist literature on the subject generally is not.

Barnes has said the project grew out of a sentence she heard repeatedly — that her son looked fine, that you would never know. With autism affecting a substantial share of the population, she wanted to make something that could reach past the small audience of textbook readers, on the reasoning that most people already have autism somewhere in their family, workplace or community whether they recognise it or not.

The stated ambition is modest and specific: to help people understand that autism is a different way of experiencing life, that being different is acceptable, and that being different is not easy. What the work does formally is make the invisible visible, and it asks the reader to feel rather than only to think — which is a harder brief than it sounds, since the condition being described is one that resists external depiction.

Publication, endorsement and reach

The work was published as a photobook following a successful Kickstarter campaign, and was endorsed by both of the UK's main autism charities, the National Autistic Society and Ambitious about Autism, as well as by figures inside and outside the photography community.

It sold widely and reached readers on every continent, and the exhibition travelled — including to Bratislava, where a visitor's comment recorded in the project's own material suggests the register in which the work was received rather than reviewed. That distinction matters to how the project is best understood: its measurable outcome was not a prize but a set of readers who had not previously encountered the subject.

A documentary practice on disability and environment

Barnes is a documentary photographer based in London with a strong, distinctive narrative style. Her recurring interests are issues around disability and the environment, and the relationship between people and the natural world. Her images are disarmingly simple and yet potent, communicating at an emotional level that is quietly powerful, and there is a good deal of humour in many of her projects. She is explicit about wanting to break out of the photography bubble and get work in front of the widest possible audience.

A graduate of Brighton University, she has shown work at the National Portrait Gallery, the Photographers' Gallery and the National Media Museum in the UK, and in festivals, galleries and publications across Europe including Hereford, Paris, Sweden, Frankfurt and Bratislava. Her photographs have appeared in the Guardian Magazine, Foto8 and the Frankfurter Rundschau.

Fourteen years is an unusual duration even by the standards of this archive, and it changed what the project could be. A body of work made over that span includes the photographer's son growing up inside it, which means the series carries a chronology it never set out to record, and gives the argument about autism as a way of experiencing life a form that a shorter project could only assert.

The Kickstarter route matters to the story too, and not only as a funding footnote. A crowdfunded photobook has to find its audience before it exists, which forced the project to articulate — in plain language, to strangers — what it was for. That discipline shows in the finished book: the sequencing assumes no prior knowledge of autism, the representational images are captioned by people on the spectrum rather than by clinicians, and the design keeps the reading experience closer to a family album than a monograph. The endorsements from the two national charities then did what a gallery imprint could not, carrying the book into schools, clinics and support groups. For a project whose whole ambition was to leave the photography bubble, the unconventional publishing route was not a compromise; it was the delivery mechanism working as intended.