On the day Rosie Barnes’ 3-year-old son, Stanley, was diagnosed with autism, the mother of two sat in her living room with the lights off. In front of her, leaflets from the doctor’s office spewed information about the developmental disorder. Barnes began to weep as she read through statistics, facts and definitions. She couldn’t find comfort in what felt like pages of jargon-filled instructions. Of course, she wanted to learn about autism, but she wanted to go deeper than that. She wanted to understand what her child was feeling.
“I’ve always felt that for me, text books weren’t necessarily a good starting place… I could never actually find [Stanley] in the textbooks and I was left feeling confused and anxious,” Barnes, 48, told The Mighty in an email.
Barnes, a London-based photographer, had been composing pictures of Stanley since he was born; she was fascinated by her son’s point of view. But after his diagnosis, she realized she had actually been photographing autism’s point of view.
“Stanley was living in a world far more complex than I could ever imagine,” Barnes told The Mighty. She wanted to document that. Today, Stanley is 17 years old, and Barnes still captures his life in a photo book called, “Understanding Stanley,” where pictures are accompanied by statements from adults on the autism spectrum or from those who support individuals with autism.
“Stanley needs a very clearly defined framework and fixed personal routines to keep him calm and happy.”
— Rosie Barnes
“He sat there for a very long time, just staring at this kind of madness.”
— Rosie Barnes
Barnes wants her photographs to reach people at an emotional level, a far more important place to start, she says, when trying to understand autism.
“I want to make the invisible visible,” she told The Mighty, “and I suppose I want people to feel, not just to think.”
“It feels like I’m trapped in a world where everyone has their backs to me.” — Nita Jackson, on the autism spectrum
“We do things in different ways but we are of the same worth and value and we are not broken and do not need to be fixed or cured.”
— Jean-Paul Bovee, on the autism spectrum
As Barnes works to raise money for “Understanding Stanley” to be published, she continues to add to the project and spread a message close to her heart:
“I think it’s a realistic book. It’s not very negative, and it’s also not unrealistically positive. It just reflects what I think autism is: Not wrong, just a different way of experiencing life.”
UPDATE: “Understanding Stanley” reached its fundraising goal and is now available here.