Autism is not a disease. No medication can "cure" it. It is a developmental characteristic that lasts throughout a person's lifetime. It affects communication and relationships with others, one's perception and understanding of the world.
Difficulties with social interaction can make it hard for people with autism to make friends. However, they often seek friendship and communication — they simply do not know how to achieve it.
Roma is a student at the summer camp for adults with autism.
According to the US Centers for Disease Control and Prevention, one in every 59 children today is born with autism. In Russia, statistics are also kept, but not in a systematic manner.
The territory of the camp
Currently, 528 children are diagnosed in St. Petersburg, a city that has a child population of 900 000. There are no statistics for the adults. In most cases, the diagnosis of early childhood autism is replaced by schizophrenia once the person reaches adulthood. Although there is no medical reason for this.
Only two years ago, the Ministry of Health pointed out the inadmissibility of an unjustified change in the diagnosis of people with childhood autism when they reach adulthood.
There is no system for helping people with autism. Russian society is not informed about the problem.
Empty chairs after art therapy class
Dear Svetlana, could you tell us about the summer camp? How did you become aware of its existence?
"Anton's Right Here" is in St. Petersburg and is the first Russian center for social rehabilitation, training and creativity for adults with autism. Last July, they were looking for a volunteer photographer and I was happy to respond to their offer. As a child, my friends were always going to summer camps for vacation but my parents would never let me go, so this was my first summer camp. It was also my first meeting with people with autism. Before starting out, there was a two-day preparatory training that was held for the volunteers which helped me a lot.
What drew you to the topic of autism?
Like many, I first became interested in the topic when I watched the documentary film directed by Lyubov Arkus "Anton's Right Here". Later, when the center with the same name opened in St. Petersburg, I began following their activities. Watching the film also coincided with my studies at the Faculty of Photojournalism. Looking back, I think that it in a way, it defined my practice and what I do now - social documentary photography.
Mary is a student. She is posing with the purple headband she made during class.
What did you learn from the people you photographed in the camp?
If you met one person with autism, that is it, you have just met one person with autism. This means that every person with autism is unique. Each one has their own special interests, strengths, and challenges. There is no medication that can cure autism, but there are effective support strategies that help people with autism learn better, communicate better, and participate in society to a much larger extent than they have before. Summer camp is one of these support strategies.
Before leaving for the camp, I thought that I would spend a few days on the riverbank, but I came to the territory of pure meanings. There, I was reminded that everyone always has the right to be just the way they are. These were days filled with light. We were attentive to each other, rejoiced at our successes and shared the victories. When you accept others, you end up accepting yourself. And this gives you the strength need to move on.
Anton, a volunteer, and Stas on the pier waiting for a boat.
What happens to the students after they come out of the summer camp?
For many, changes in everyday life can be stressful, and for people with autism, the world around them seems a very unpredictable and confusing place. The very idea of change can be very uncomfortable for people with autism, but they can cope well if they start preparing for it in advance.
This camp program is for adults and includes creative workshops, sports, boating, disco, quest, and communication. After the camp it becomes much easier for them to make contact with new people, take care of themselves in the absence of their parents and visit unfamiliar places.
Mila is a volunteer. She is from France and takes part in the program "Social Year" for volunteers.
We see Mila, who is a volunteer from France. What do the volunteers do after the summer camp is over?
Mila came from France to participate in the "Social Year" program for volunteers. A volunteer is basically a guide between the students and the outside world who helps them take an active part in their life and in the process becomes a significant person and friend for them. After returning to St. Petersburg, the volunteers continue to participate in the programs of the center "Anton's Right Here": they accompany students in classes, workshops, help them gain further experience in social communication and master daily life and communication skills.
Misha, a student, at one of the gatherings between students and volunteers around the fire.
What happens to the children with autism who are wrongly diagnosed with schizophrenia?
Today in Russia, there are two possible scenarios for the life of a person with autism or any other mental disorders. On one hand — isolation in a psychoneurological boarding school, on the other — a comprehensive model of rehabilitation, in which a person with autism lives in society and realizes hers or his rights to freedom, education, work, leisure and communication. The Human Rights Council recommends building small apartment-type buildings instead of boarding schools, passing a bill on distributed guardianship, introducing the concept of "accompanied living", "accompanied employment" and "accompanied social employment" into legislation.
Olga, a volunteer, is showing her new tattoo: "People endure. People do not endure. People will endure. People are finite. People fly." A quote by Anton Kharitonov, the main character in the movie "Anton's Right Here" by Lyubov Arkus.
Who is Anton Kharitonov?
Anton Kharitonov is the hero of Lyubov Arkus’ film "Anton's Right Here", a boy who is autistic. He lives between an apartment on the outskirts of Petersburg and a mental hospital. We meet Anton when he is about to become a patient in a neuropsychiatric institution. As stated in the synopsis of the film "It is not a story about how one person helped another, but about how one person recognized herself in another. About how there is the Other who lives in each of us and must be destroyed every day inside of us in order to survive."
Lake Sukhodolskoe, Losevo village
As an artist, you chose to be confronted with the pain of others while portraying them and telling their stories. How do you endure the stress and weight of this profession?
I am not confronted with the pain or the open wounds of others in all my work. The heroes of my stories are strong people who overcome difficulties and trials without losing their human dignity. I admire them, learn a lot from them and I am very grateful that they share their experience with me and allow me to take their portrait. I recently finished reading a book by Nobel prize-winner Svetlana Alexievich "The Unwomanly Face of War". In it, Alexievich writes that suffering makes a person free. It is something that belongs only to you and lives in you protected by your memory.
Roma sitting in the forest.
When is photography not enough?
Photography is a limited language, and none of the languages is exhaustive. It depends on what the author wants to say, what the topic of his statement is. And how a photograph or other medium helps you say what you want. If you feel dissatisfied, you need other tools. You need to search for them, try them. The main thing is to have something to say.
Lida is a volunteer.