The journey began many years ago when Rosie Barnes was lying in the grass with her 18-month-old son, Stanley. As they looked up at the sky they spotted a 747 flying overhead. Keenly aware of its enormous size, Barnes was intrigued when Stanley referred to the jet as a “tiny plane.” At the time, Stanley’s proclamation made Barnes speculate how children decode the world in which they live. At what point do they understand what is real and what is fake, she wondered. A professional documentary photographer by trade, Barnes began to compile a series of images over the years that explored these very themes of scale and reality with her son in mind.
What Barnes did not anticipate was her eldest son, who could count and sing in perfect pitch as a toddler, began exhibiting signs of autism just 18 months later. Stanley was officially diagnosed with autism at three and a half years old. Her quest to convey the world according to her child through photographs continued. Fast forward to today, Stanley is now 18 years old, and Barnes has published an extraordinary book reflecting his life and autism called Understanding Stanley, Looking through Autism.
Barnes has managed to beautifully capture what she perceives as Stanley’s world – a world viewed much differently than her own. The 64 images of Stanley along with objects and landscapes representing autistic characteristics and experiences over the span of 14 years provide readers with a very special look at the autistic world. As she explains in the forward, “This is not a ‘what to do’ book. It’s a ‘what it might feel like’ book.”
While a multitude of materials have been published about Autism Spectrum Disorder (ASD) that focus on research and prospective ways to conquer daily life, Barnes’ goal was to give people a glimpse of what life might feel like from an autistic child’s perspective. She calls her work a quiet and peaceful book about autism.
Photos in the book range from a young Stanley watching his world speed by in a blur while riding a train to a lone climbing frame in an isolated park. The book includes interesting anecdotes to explain the significance of many of the photos as well as intriguing quotes from specialists and people on the spectrum.
The photo of a lone ice cream cone melting on the rocks, for example, reflects one of Stanley’s challenges as a young boy. According to the text, Stanley, who typically loves ice cream, had only three licks of his ice cream cone that day before losing interest, handing it to his mother and running off. When Stanley is interested in something, Barnes explains, it completely garners his attention. It is evident by looking at the photo that this was not the day for ice cream.
Another photo in the book depicts a young boy standing in the tall grass surrounded by dead trees, strangled by ivy. Most people avoid this area, Barnes tells readers. But for Stanley, it was a favorite spot. It’s all a matter of perception.
Barnes writes in the book that creating Understanding Stanley, Looking through Autism has helped her understand what life might be like for her son and to see things differently. “Not to judge, not to make assumptions – because things are not always what they seem,” she wrote. With autism, she says, there is no visible sign. “There is no wheelchair, no hearing aid…to anyone who might be looking at him, judging him.”
Using a colorful array of pleasing visuals and short texts, Barnes has managed to raise awareness and understanding for people on the spectrum and the people who love them. She hopes to build the foundations upon which acceptance and support can be made.
by Amy KD Tobik
This article was featured in Issue 28 – Sharing the Love