In Russia, a camp specifically designed for individuals with autism helps provide the support and resources they often lack.
On the banks of Russia’s scenic Vuoksi River, between St. Petersburg and the border of Finland, is a camp for Russian children and adults with autism. Every summer, campers (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 facilitate socialization and help transition campers into a more independent lifestyle. 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.
Autism diagnosis challenges in Russia
A 2011 study by the Firefly Children’s Network, a Russian organization for disadvantaged children, reported that the concept of autism is still quite new for Russia. Not many medical and non-medical professionals are familiar with it. The study found that even when parents described the ASD symptoms of their child to a doctor, they often did not get the correct diagnosis or treatment for their children.
According to a 2018 study by the U.S. Centers for Disease Control and Prevention, one in 54 children in the U.S. is diagnosed with ASD. In Russia, ASD is considered to be a childhood disorder, so when a child turns 18 the diagnosis is changed (usually to schizophrenia) according to Anton’s Right Here Center. That is why an adult with ASD cannot count on any government help.
Advantages of the camp
In July 2019, I traveled to the village of Losevo to document the summer camp. The camp runs two sessions: one for children and another for adults. I attended the week-long adult camp and photographed the 15 participants, 21 volunteers, and other staff. Volunteers and employees were always ready to help.
For people with autism, learning to be independent in everyday life is a crucial skill to help them thrive. After the camp, it becomes much easier for many of the campers 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 me. After a week, I left with the reminder that each person has a right to a place where they can be themselves. By accepting others, in the end, you accept yourself.
Inclusion
Even before the COVID-19 pandemic, the Anton’s Right Here Center was under pressure. It is one of the few places in the country that provides resources and educational support for teenagers and adults on the spectrum.
“Until recently, we had no official statistics on autism in Russia,” says Elena Filbert, the center’s Executive Director. “While there is some statistical information available about children, we have no such information about adults.”
During the pandemic, the center quickly expanded its reach from teenagers and adults to children as well. “Families were turning to us in desperation. They couldn’t leave the house with the children and needed help,” Filbert says. The center stepped in to offer tutoring, food, and financial assistance.
The center also organized its first-ever week-long summer camp, hosting 14 families and their children. They invited both children with autism and the neurotypical children of people who work at the center to participate.
Finally…
“This camp was just our first and very memorable experience,” Filbert says. “Our new dream is to build a kindergarten for our children. It was important for us to make the camp inclusive to show the neurotypical children the work that their parents do and to make them think and ask questions about children with autism.”
“Although we used some methodologies we’ve learned about before, our main approach to the experience was to treat children as children first, and as children with autism second.”
*All photos by Svetlana Bulatova.
This article was featured in Issue 124 – Autism Around The World
