Around 650,000 people in France have Autism Spectrum Disorders — it is definitely becoming essential to understand them and listen to them. Only 0.5% of these people could work in an ordinary environment, which obviously delays any inclusion strategy. A disconcerting reality when we know that learning and socialization are the only real ways to build an independent future. French photographer Lucie Hodiesne Darras knows this reality well. This is evidenced by her documentary series Lilou, started in 2018, in which she captures the daily life of her brother Antoine, who has ASD. "Lilou is the nickname we gave my brother Antoine, who is now 34 years old. He is an exceptional person, living in a world different from ours." Through this visual ensemble, we can discover its fantastic protagonist, a complex person full of life. Incredibly poignant, the Lilou images communicate the diversity of emotions that run through his life.
Lilou, an inside view of autism
Series, 1st place
My brother and his dog
Maikko, the family's dog, and Antoine have a strong relationship. My brother has always loved the presence of animals, like many other people with Autistic Spectrum Disorders who enjoy being surrounded by them. Most of the time, there is a strong link between them because they share a preliterate and instinctive langage.
Maikko, the family's dog, and Antoine have a strong relationship. My brother has always loved the presence of animals, like many other people with Autistic Spectrum Disorders who enjoy being surrounded by them. Most of the time, there is a strong link between them because they share a preliterate and instinctive langage.
Mango Juice and Pills
Everyday, Lilou sits in the kitchen, and takes his pills with some mango juice and salted crackers. The medicines help him in his everyday life, specifically to avoid sensory overload that can cause a nervous breakdown with his condition. The public does not know much about this.
Everyday, Lilou sits in the kitchen, and takes his pills with some mango juice and salted crackers. The medicines help him in his everyday life, specifically to avoid sensory overload that can cause a nervous breakdown with his condition. The public does not know much about this.
Lilou's gaze
After breakfast, he goes back upstairs and instinctively reaches the bathroom. He takes off his pyjamas and gets directly into the bathtub to take a shower. It's only during the shower that he starts to feel awake. The light touch of the water on his palms is enjoyable. Touch is definitily his most important sense.
After breakfast, he goes back upstairs and instinctively reaches the bathroom. He takes off his pyjamas and gets directly into the bathtub to take a shower. It's only during the shower that he starts to feel awake. The light touch of the water on his palms is enjoyable. Touch is definitily his most important sense.
Foam party
When we were younger, Lilou really liked taking a bath. On the side of the bathtub, there were lots of bottles with shampoo and shower gels. One day, he emptied all the bottles into the bath and the foam came up to the ceiling. In the middle of the foam, there was a hole for his face.
Когда мы были помладше
When we were younger, Lilou really liked taking a bath. On the side of the bathtub, there were lots of bottles with shampoo and shower gels. One day, he emptied all the bottles into the bath and the foam came up to the ceiling. In the middle of the foam, there was a hole for his face.
Когда мы были помладше
The eye of Lilou
My brother has developed a non-verbal language by using objects. He gives us his shoes when he wants to go outside and explore the world. A plate means that he is hungry and a glass shows he’s thursty. My brother has always needed to be reassured. To feel good, he needs to follow a routine and do things at the same time in the same place. Waking up, walking or going to bed at the same hour, everyday. He doesn’t like change. He loves being surrounded by nature, especially contact with water.
My brother has developed a non-verbal language by using objects. He gives us his shoes when he wants to go outside and explore the world. A plate means that he is hungry and a glass shows he’s thursty. My brother has always needed to be reassured. To feel good, he needs to follow a routine and do things at the same time in the same place. Waking up, walking or going to bed at the same hour, everyday. He doesn’t like change. He loves being surrounded by nature, especially contact with water.
Invisible stains
There is an immense chasm in our society left by a colossal lack of representation of people with autism. Unless you live with this disability on a daily basis, who can really say they understand it? Awareness necessarily goes hand in hand with a demonstration. And this is where the photographic medium takes on its full meaning, and can help provide some key elements about the autistic world.
There is an immense chasm in our society left by a colossal lack of representation of people with autism. Unless you live with this disability on a daily basis, who can really say they understand it? Awareness necessarily goes hand in hand with a demonstration. And this is where the photographic medium takes on its full meaning, and can help provide some key elements about the autistic world.
Lilou Gainsbourg
This is one one of the first pictures I took of Lilou. To record memories. On that day, we were at Disneyland in Paris because my brother loves the rollercoaster. So this picture was taken in the queue of a 3D ride. With his glasses, he really looked like a rockstar. This is not the kind of thing we are used to seeing when we think about autistic people.
This is one one of the first pictures I took of Lilou. To record memories. On that day, we were at Disneyland in Paris because my brother loves the rollercoaster. So this picture was taken in the queue of a 3D ride. With his glasses, he really looked like a rockstar. This is not the kind of thing we are used to seeing when we think about autistic people.
Sensory overload
Due to his autism, Lilou can sometimes have a sensory overload, so he often needs to be in a quiet place and in complete darkness. The colors, the light, the noises, the smells all put together, can make him feel anxious. This is one of the main characteristics of autism.
Due to his autism, Lilou can sometimes have a sensory overload, so he often needs to be in a quiet place and in complete darkness. The colors, the light, the noises, the smells all put together, can make him feel anxious. This is one of the main characteristics of autism.
Lilou's smile
Of course, there were some difficult moments my brother had to endure because of autism, but what his unique perception of the world has taught us was more important than anything else. He has taught us hedonism, altruism and humanism. Antoine and I have a strong relationship and by using the camera, we create our own patterns of interaction. Undoubtedly the fact of growing up with his autism has encouraged me to develop a certain sensibility, an artistic flair, and to shape my personality.
Of course, there were some difficult moments my brother had to endure because of autism, but what his unique perception of the world has taught us was more important than anything else. He has taught us hedonism, altruism and humanism. Antoine and I have a strong relationship and by using the camera, we create our own patterns of interaction. Undoubtedly the fact of growing up with his autism has encouraged me to develop a certain sensibility, an artistic flair, and to shape my personality.
The love of a mother
This photograph is evidence of mother’s love, even if her child is different. It also shows the everyday life of a person with autism, which society can’t really imagine.
This photograph is evidence of mother’s love, even if her child is different. It also shows the everyday life of a person with autism, which society can’t really imagine.
Silhouettes
It is one of my first analog photos. We were walking along the seashore during the Photography Festival Les Planches Contact in Deauville, near Peter Lindberghs exhibition, when Antoine instinctively got into position in front of a print, as if he were also one of the models. In a way, this is a photograph inside a photograph.
It is one of my first analog photos. We were walking along the seashore during the Photography Festival Les Planches Contact in Deauville, near Peter Lindberghs exhibition, when Antoine instinctively got into position in front of a print, as if he were also one of the models. In a way, this is a photograph inside a photograph.
Socks and shoes
When he comes home, Antoine takes off his shoes and socks right in front of the stairs to help him relax.
When he comes home, Antoine takes off his shoes and socks right in front of the stairs to help him relax.