Photographer Erin Brethauer reflects on her visits to a North Carolina camp for young people with autism.
Tell us a little about the project. This series focuses on young people with autism and was produced in three different intervals: a week in 2008, three weeks in 2011, and during four weeks this summer at Camp Lakey Gap, formerly known as Mountain Adventure Camp, in North Carolina.
The work started as an assignment from my newspaper, the Asheville Citizen-Times, back in 2008 but has since turned into a personal project. Ashley Brooks, the education reporter at the time, and I spent a week at camp following three campers, each one representing different symptoms of autism. We wanted to learn more about autism while highlighting this special summer camp in our community.
It’s estimated that 1 in every 88 children born in the United States will have autism spectrum disorder, according to the Autism Society and the Autism Society of North Carolina. In North Carolina, the statistic seems to be closer to 1 in 70. It’s also five times more prevalent in boys than in girls. Researchers are still not sure what causes autism.
Why did you choose to incorporate diptychs (split frames) as a storytelling device? Back in 2008, I was bringing an old Hasselblad medium format camera with me on assignments. I liked that it made me slow down and look at things differently. I had it that week and on the last few days I took portraits of some of the campers with it. I was also really interested in the campers’ daily schedules, so I scanned them and made diptychs, pairing a portrait of a camper with his or her schedule.
I think the pairing gives a more intimate glimpse into the person’s life and how he or she sees the world and is able to communicate. They also reflect how wide-ranging and varied the symptoms are for diagnosing autism.
Many people with autism are routine-oriented and lists are a visual element that helps them. I like that you see not only the list of their day’s activities, but the texture of the paper, the penmanship, the small personal flourishes. Everyone’s communication style moves at a different pace and I tried to portray that in the diptychs.
Why do you keep returning to this story? I keep returning because I find the campers and counselors inspiring and because they teach me so much about autism, communication, and what it means to care for someone. I’ve also enjoyed seeing how the campers have grown up. Many return to camp every year, so I’ve seen their behavior and the way they communicate change. I hope the way that I interact and work with them has also matured.
Going to camp is a positive outlet for me. Working at a daily newspaper can feel like the daily grind. We work on different stories every day and I needed something consistent, stimulating, and fun to work on. This project allowed me to meet interesting people while pushing me to make better images.
What have you learned about autism and what has surprised you the most? Autism was mysterious to me. It still kind of is. I guess what surprised me the most was how varied and different the symptoms can be. People with autism have a different way of learning, understanding, and reacting to things and there doesn’t seem to be one way to define it.
Through meeting the campers and watching how the counselors care and communicate with them, I have gained some insight into their world and how each person needs specific things to function and feel comfortable. Working on this project has also made me think about how I communicate with others and the routines I maintain to create normalcy. I’ve also learned to be very direct and honest with the people that I meet at camp, which helps me in my daily work as well.
Is there one camper, moment, or situation that stuck with you? The first year I went to camp, I followed a set of twins named Albert and Susanna who were six years old at the time. Both have autism, but completely different symptoms. Susanna is bubbly, verbal, and outgoing but struggles with attention deficit disorder and social issues. She is considered high functioning and relies on a written schedule as you can see in the diptych. By contrast, her twin, Albert, is low functioning and could not speak or use the bathroom alone. His schedule was an object that signified an activity. To get Albert to the pool, his counselor would show him a flotation device and point in the direction of the water. That contrast in communication styles sums up the spectrum for me. They were both so lovely, but so different.
Was it hard to connect with the campers? Do you use the disconnectedness as part of the image? Some campers were very curious about what I was doing and how my camera works, so I tried to explain. Some didn’t seem to notice me at all. After a while, most of them just ignored me, which was great. I tried to go for a mix of candid and posed portraits, depending on the situation.
Looking at the images, I do get a sense of disconnectedness in some of the subjects and I think that is a reflection of how autism affects certain people. I wouldn’t say that I seek that feeling out specifically when I’m making pictures at camp. I just happened to capture some of those moments. I hope there is a balance between that feeling of disconnection and connection because there is quite a range within those that attend camp. I want the images to show a range of feelings while giving a glimpse into who these people are and how they function.
Tell us about one of your favorite pairings. Why is this one particularly successful? I’ve always been partial to the portrait of Taylor and Arley from the first year I went to camp. This was right after some pool time and they were walking back to the lodge and posed for me near some rhododendrons. I like their expressions and the way that they are standing just a little askew.
Their schedule also has some really nice detailing because you can see the care the counselor took, especially the part that says “feed fairies.” It shows so much personality and what it’s like to be a kid—autistic or not—at that age.
I also love Brandon’s portrait and the way he’s examining his counselor’s hands. Some people with autism display fascinations. They’ll repeat a motion or a phrase over and over again. That summer Brandon was fascinated by a small lizard toy he would spin in a certain way while playing in the water. He would also examine people’s hands or watches. I like how it captures his focus, but also the importance of touch in connecting with other people.
What should we know about the campers and autism? It’s important to recognize how special camps like this are for giving people with autism a supportive summer experience. For some, the week at camp is a difficult adjustment to make outside their usual routine. But for many, camp allows the campers a place to experience new things, make new friends, and have fun.
I hope my photos shed a little light on what it means to have autism and the different ways people communicate who have this disability.
Erin Brethauer is a staff photographer-turned-multimedia photo editor at the Asheville Citizen-Times in North Carolina where she has been working since 2007. Originally from Milwaukee, she graduated from Marquette University and the Milwaukee Institute of Art and Design in 2005. She is the current president of the North Carolina Press Photographers Association. This project was selected by the Magenta Foundation as a U.S. winner in the 2012 Flash Forward Emerging Photographer competition.
A version of this article first appeared in the Full Frame blog.