For these autistic adults, summer camp offers rare freedoms

Russia often misdiagnoses adults with autism. At this old Soviet retreat, they get a chance to nurture creativity and independence.

Photograph by Svetlana Bulatova
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Mary Makarova attends a summer camp for Russian adults with autism run by a St. Petersburg-based center. In a country where autism is often misdiagnosed, the camp teaches social skills along with activities like boating and crafts. Latynina wears a purple headband she made in class.

Photograph by Svetlana Bulatova

For these autistic adults, summer camp offers rare freedoms

Russia often misdiagnoses adults with autism. At this old Soviet retreat, they get a chance to nurture creativity and independence.

On the banks of Russia’s scenic Vuoksi River, between St. Petersburg and the border with Finland, is a camp for Russian children and adults with autism. Every summer, campers ranging in age from 18 to 40 and a handful of volunteers gather to boat, craft, and cook at the Soviet-era tourist destination.

The camp is an initiative of Anton’s Right Here, a center in St. Petersburg that provides support to people with autism spectrum disorder (ASD). It aims to make socialization easier and help transition campers into a more independent lifestyle after. In Russia, where there are no statistics about the prevalence of autism and limited medical assistance, it’s a rare place of freedom and understanding.

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Donning an alien costume, Igor Litvinenko partakes in a camp game. The volunteers and staff of the camp encourage students to be independent and comfortable with unfamiliar people and situations.

A 2011 study by the Firefly Children’s Network, a Russian organization for disadvantaged children, reported that, “The concept of autism is quite new for Russia, and not many medical and non-medical professionals are familiar with it.” The study found that even parents who described children with ASD symptoms to a doctor often did not get the right diagnosis or treatment for their children. “Other discourses such as the neurological approach to birth trauma, local brain damage, etc. are more popular in Russian professional society.” (Read how finding work, love, and independence can be challenging for those on the spectrum.)

According to a 2018 study by the U.S. Centers for Disease Control and Prevention, one in 54 children in the U.S. are diagnosed with ASD. World Autism Awareness Day, on April 2, seeks to bring attention to autism, which includes a broad range of conditions that can affect social and communication skills.

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Volunteers and students play in a popular Russian folk game called "Trickle."

“In Russia ASD is considered to be a childhood disorder, so after 18 the diagnosis is changed, usually—to schizophrenia,” according to the Anton’s Right Here Center. “That is why an adult with ASD cannot count on any government help.” (This discovery could help doctors detect autism earlier.)

In July 2019, photographer Svetlana Bulatova traveled to the village of Losevo to document the summer camp. Bulatova, who lives in St. Petersburg, knew of the Anton’s Right Here Center’s work and volunteered as a photographer for their annual camp. The camp runs two sessions: one for children and another for adults. Bulatova attended the week-long adult camp and photographed the 15 participants, 21 volunteers, and other staff.

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Camper Oleg Vikhrov poses with the flower on the camp's grounds. The motto of this center that runs the camp is “Help us to help them. Help them to help you.”

“Volunteers and employees were always ready to help, but for people with autism it is very important to learn how to be independent in everyday life, and it will help them in the future at home,” Bulatova says. “After the camp, it becomes much easier for them to make contact with new people, take care of themselves in the absence of parents, and visit unfamiliar places.”

The motto of the Anton’s Right Here center is “Help us to help them. Help them to help you.” It resonated with Bulatova. After a week, she left with the reminder that each person has a right to a place where they can be themselves. “By accepting others,” she says, “in the end, you accept yourself.”