In January 2023 I started a photo project focusing on the lives of people with autism and their families and friends. I have worked with 11 families who were kind enough to share their joys, problems, hopes and worries with me. I have worked with children, adolescents, and adults with autism.
The project
I wanted to show the visible or invisible struggles and joys of living with autism. I wanted to honour those who struggle with the small or big challenges of being neurodivergent in a neurotypical world. With curiosity and empathy. Without the condescendence or over-dramatization that are so often part of how people look at those who are different.
What do these people love to do? What are the places or situations they like to be in? What does living with autism mean in terms of daily tasks, parenting, autonomy, relationships, or work? What are the coping mechanisms they develop? What sort of interaction develops between them and their autistic and non-autistic peers? How do their families organize their life, build support systems for their children, and manage psychologically?
I was lucky enough to find people that were curious about my project and willing to help. They gave me a list of persons who might be interested. I started writing to them or calling them. Some of them didn’t answer but a surprisingly high number did. More people were added to the list in the following weeks and months.
The participants
As we start to do things in the world, the world responds to them and new things get set into motion. Word about the project gets around. People share photos. Some want to be part of it. Some simply want to know about it.
It’s amazing and humbling to see the willingness of people with autism and/or their families to make time for me and open their personal space and vulnerability to me. It takes courage to open up. It takes trust. I feel privileged to receive this trust. At the same time, this creates an expectation and pressure on myself to be up to the task. “Don’t screw this up, man!” It’s my voice, nobody else’s.
In the autism community, there is a great need to be seen, to be witnessed, to share one’s story, to connect. Many families are socially isolated as their lives revolve around the needs of the person with autism. Adequate support, from sports activities for kids to respite time for parents, are scarce. Caring for a child with high support needs is a lonely road. Health insurance covers therapy only partially. Some therapeutic activities are excluded from insurance altogether. There is a widespread feeling of not being seen, listened to, important enough to have proper support.
What I wanted to do is capture what’s happening without scripting and moving participants around. In some cases, this came naturally. During my visits, the families proposed some activities to their kids. We moved from one room to another. We took a walk in the forest. The interaction that developed spontaneously offered plenty of opportunity for photography. In other cases, my subjects did not want to play ball. They wanted to eat, sit on the sofa with their tablet, move incessantly through the room. This was also them. It was part of their life. I took it as such and I photographed whatever was there.
The work
Most of the work came after the visits. There were audio recordings to be transcripted, narratives to be written, photos to be edited. There was the pressure of doing justice to each of my subjects by publishing things that depict their life honestly while protecting their privacy. There was also, I must add, the self-questioning and self-doubt. The “am I really up to this” moments.
While all this is very much about autism, the relevance of the project is not limited to autism. What happens to the participants in this project says a lot about the social acceptance of some behaviors and ways of being. It says something about the support systems we build and about the accessibility of support services, whenever they exist. It says something about the way we understand normality and they way we include or exclude people from our circle of concern based on this understanding.
The future
In early December 2023, there will be a photo exhibition and the launch of the “Autism Stories” photobook, which mixes visual and written material to tell the stories I encountered along the way.
I will continue to develop the project by focusing on families, friends and therapists, and exploring their different roles in the lives of people with autism.
All details concerning the exhibition, photobook launch, and future updates are to be found on the project site. Once published, the photobook will also be available for download.
