Social stigmas, sometimes even shared by doctors, and late diagnoses are the biggest obstacles in tackling the autism problem in Russia, say parents of affected children, who are increasingly looking abroad for advice.
“On American websites, it says that around age one or one-and-a-half, the symptoms begin appearing,” says Lev Tolkachev, whose 5-year-old daughter is autistic, on the sidelines of a September 10 seminar at RIA Novosti featuring international experts on autism. “But unfortunately, the majority of parents in Russia say, ‘So what if a child doesn’t start talking until age five?’ That’s a huge catastrophe.”
Tolkachev is one of the many Russians who brave the storm of raising autistic children in Russia as best they can. But frustrated with the lack of dedicated, appropriate care in Russia – coupled with society’s less than welcoming attitude – Tolkachev and his compatriots are increasingly adopting foreign methods to treat autism, such as the applied behavior analysis (ABA) technique, developed in the United States in the mid-20th century.
The system, developed by American B.F. Skinner and Norwegian Ole Ivar Lovaas, is an approach to treating autism that focuses on personal interaction, improving a child’s verbal, motor and other skills through a series of individual exercises. The child’s progress is also closely monitored over time.
Having become a standard for treating autism in the West, the system has helped countless children there and has steadily boosted their chances of successful treatment and societal integration.
Israeli expert Michael Ben Zvi, a leading expert on child autism, advocates the ABA approach and stresses the importance of an early diagnosis of the disorder in children – advice critics say is largely ignored in Russia.
“If there is even a suspicion that a child has autism, it is necessary to begin work and not lose any time,” he told the crowd of Russian parents at the seminar. “Believe me – the sooner you start, the better the result.”
While Tolkachev says a handful of high-quality autism treatment centers exist in Russia – among them, the Center for Curative Pedagogics in Moscow – clinics and researchers are still largely playing catch-up, either unfamiliar with approaches such as ABA or not using them to their fullest potential.
“As far as I know, this kind of rigorous monitoring is not used at all in the Russian system,” Tolkachev says, adding playfully that the method is somehow quintessentially “American.”
“Just look at baseball or American football – they keep careful track of each point, each move,” he says.
Yet despite the importing of such foreign techniques, which some experts say have slowly but surely begun to take root in Russia, few solutions exist for the crippling stereotypes and intolerance many sufferers and families face. If debates in the West are already tackling the ethical issue of predicting autism before birth, in Russia even the idea of autism is still nearly taboo.
Svetlana Budnitskaya, who as a senior manager for family and child affairs at the Charitable Fund “Joint” works with autistic children, recalls an incident during a recent visit to Kaliningrad, when a mother expressed to Budnitskaya her “shame” after her autistic child acted out in public.
“Someone just called the police and said, ‘Get this kid out of here,’” she says. “That hit me hard, because society is so unprepared for this, for how to treat these people. And instead of the mother simply accepting the child, the mother becomes socially embarrassed.”
In another instance, a note sent from the Moscow Aquarium last April to teachers who tried to organize a visit with a group of autistic children read: “Refused. Visitors do not like to see the disabled – it disappoints them. It is unacceptable.”
Perhaps the most appropriate, if unsettling, indicator of Russia’s uneasiness with the disorder is the lack of official statistics that keep track of the number of affected children in Russia. If applying researchers’ estimates that between two and 20 cases of autism appear per 20,000 children, Russia may be home to around 200,000 autistic children, according to the St. Petersburg-based Fathers and Sons Fund.
Even more worrying, however, is the open prejudice encountered from the most unlikely sources, including government officials. Sergei Buyankin, a Moscow city official, made headlines last May when he reportedly said, “Hitler buried kids like this in the ground,” while speaking about a local private school, St. George’s, which caters to special needs children.
Other affected parents say Russian officialdom has been less than helpful in their fight against autism.
Svetlana Ushanyova believes her 3-year-old son, Dima, has shown all the signs of autism – but, according to doctors, she can’t be sure. Ushanyova, who regularly attends seminars on autism and seeks expert advice from abroad, says the state discourages doctors from diagnosing autism at an early age to shake-off the responsibility.
“If they diagnose autism at age one and a half, the state is then forced to guarantee care for the child according to the law,” she says. “I’m a patriot and I love my country, but I’m just pointing to very basic facts.”
The fight against autism in Russia has, however, received a helping hand from high-profile benefactors, such as Russian supermodel Natalia Vodianova. A noted lover of charity, Vodianova set up the Naked Heart Foundation in 2004 to provide Russian children help with disabilities.
According to Vodianova, successful treatment starts from the parents: “If a parent believes in their child and understands what they’re dealing with, the chances that the child will live a normal, full life are greatly increased,” she said.
Still, Ushanyova, like Budnitskaya, the “Joint” Fund manager, says the predominant social stigma may be the biggest obstacle in successfully tackling autism in Russia. She says there’s a vast amount of “propaganda” about the disorder which makes even doctors and specialists treat children as if they’re diseased.
“I understand that this is a neurological disorder and that children are simply born this way – that it’s hard for them and they need help,” she says. “There are plenty of people born with bad eyesight, but they’re not treated like psychos or bad people, are they?”