We’re right here; Building a society inclusive of autism in Russia involves battling with myths, superstition and the Soviet legacy. But civil society is forging ahead.

(opendemocracy.net – Natalia Antonova – December 2, 2015)

Natalia Antonova was born in Kyiv and grew up in North Carolina. She works as a journalist and playwright.

All over the world, autism is a condition that attracts scrutiny and controversy-it is both highly variable and often poorly understood.

In Russia, a society still struggling with inherited Soviet disdain of anything physically or neurologically ‘irregular’, attitudes about the condition are slowly beginning to change. In 2012, Russian media widely cited an estimate that up to 200,000 Russian citizens of varying ages live with autism.

Throughout Soviet history, everything from neurological disorders to visible physical disability was taboo. Mass institutionalisation of children with disabilities was common under the Soviets, for example. Even today many parents of special needs children report pressure from doctors to turn these children over to the state. Soviet ideology required that such children and adults be separated from the community. The consequences of such treatment are still being felt to this day.

‘If it can happen to a supermodel’s sister…’

In August this year, Oksana Vodyanova ordered lunch at a café in Nizhny Novgorod, only to be told by the owner she should leave and ‘get cured’ for scaring other customers. When Oksana’s carer asked that they be allowed to wait, the owner threatened to call ‘an ambulance and lock [Oksana] in the cellar’.

What happened to Oksana would have gone unremarked upon-just another indignity, possibly in a list of many such indignities-if wasn’t for the fact that Oksana’s sister is supermodel Natalia Vodyanova.

Natalya Vodyanova is famous for trading on her stunning looks and charisma to escape a hard-luck background, but is equally famous for never forgetting her roots. In Russia and abroad, Vodianova is known as a tireless philanthropist, working for the rights of underprivileged children and children with disabilities.

By widely publicising the nasty treatment that her sister received, Vodyanova forced Russian society to reckon with how little protection children and adults with special needs are afforded. ‘If it can happen to a supermodel’s sister, imagine what it’s like to be a regular Russian person with autism,’ the refrain went.

Of course, one doesn’t have to imagine. Before Oksana ever walked into that café, Russian filmmaker Lyubov Arkus had already won accolades for the 2012 documentary Aton’s right here, a portrayal of her personal relationship with a boy with autism who required an outright rescue from an uncaring medical system.

Other popular personalities, including filmmaker Dunya Smirnova, have also championed the rights of people with autism.

Earlier this year, Smirnova, who heads the Vykhod Fund for autistic people, told the Kommersant newspaper that ‘there is no roadmap’ for Russians with autism. ‘A person is diagnosed, then he lives the kind of life that his parents can provide,’ Smirnova said. According to Smirnova, the Russian government ‘is not ready to see [autistic people] as members of society.’

Yet Smirnova and her people are working to change that by actively engaging the government-campaigning for early diagnosis (currently, Russian children are diagnosed at five or seven years of age, if at all, she says), greater awareness of symptoms, a government-sponsored program that would create a systemic approach to aiding autistic children and their families, as well as more support of adults with autism, who frequently end their days in abysmal state care facilities where their condition is wrongly treated like a psychiatric disorder. Indeed, in February 2015, the Russian Ministry of Labour and Social Protection issued a report that stated that 27 Russian regions (nearly a third of the country) provide no statistics on autism diagnoses, which could mean that autism is severely under-diagnosed in the country.

Smirnova thinks that real systemic change will probably take at least 30 years-maybe less in the age of the internet, where information is more readily available.

Myths and superstitions

For many Russians, such change cannot come fast enough. I originally met Nadezhda, in her 30s and a native of Russia’s Krasnodar Krai, at a charity market. Her young son has highly-functioning autism.

Nadezhda’s husband could not cope with the idea of parenting a special needs child and left shortly after the diagnosis was confirmed, though he still supports the family financially. Nadezhda says she isn’t angry with him, not anymore. ‘[Russian] society is remarkably lenient towards men in these kinds of situations,’ she says with a smile. ‘A mother is expected to be selfless, but a father is practically expected to split.’

Myths, superstitions, and overlapping prejudices dog the relatives of people with autism as well. And although the internet, in that sense, can be a tool for greater understanding, it is equally handy for the spread of disinformation.

According to Nadezhda, her former mother-in-law read on an online forum that ethnically diverse people have higher rates of autism, then claimed that Nadezhda’s own diverse ethnic background had ’caused’ the condition in her son.

After her divorce, Nadezhda moved with her son to Moscow, where she says there is more understanding and less small-mindedness. As far as Russian parents of autistic children go, she considers herself extremely privileged. ‘I have a good job, my ex-husband still helps take care of us, my parents are also very supportive,’ she says. ‘This is not how the majority lives.’

Nadezhda appears to be right. Although it is very hard to obtain statistics on autism rates in Russia, the RIA Novosti and Fontanka media outlets have claimed that up 80% of Russian families supporting an autistic child are financially underprivileged.

The reason for that is said to be exactly what happened to Nadezhda: a partner walking out (but, unlike Nadezhda’s ex, not providing child support) coupled with a parent’s inability to spend too much time away from the child and make a decent living.

Lack of early diagnosis, which can greatly aid a child’s development, and government support programs means that such parents are effectively on their own. Add social stigma and you have the perfect cocktail of isolation and despair.

Closing the gap

In the absence of systemic, government-backed programs for people living with autism and their relatives, civil society has moved to close the gap.

Alongside Smirnova’s Vykhod Fund, there are a number of local centers in Moscow, St. Petersburg, Samara, Pskov, Voronezh, Tyumen and others urban areas that help special needs children and adults with everything from different forms of therapy to overcoming challenges with adaptation in society. National organisations such as Doroga v Mir and Yablochko meanwhile aim to establish networks of help across the country.

Due to Russia’s immense size, and unevenly distributed medical and social infrastructure, one of the biggest challenges is getting help out to the people in smaller towns and villages, as well as preventing the spread of misinformation and proliferation of fake ‘cures’ for autism. ‘Several doctors in Krasnodar [region] offered to “cure” my son’s autism when he was small,’ Nadezhda told me. ‘All for vast sums of money, of course.’

Nadezhda thinks that the lingering stigma surrounding autism frequently pushes desperate parents to try expensive fake treatments, while forcing poorer parents to sometimes abandon their children altogether. ‘I don’t judge anyone. There are cases when children with severe disorders cannot be taken care of at home, especially as they get bigger,’ Nadezhda says. ‘But there are also a lot of families that, with adequate help, wouldn’t have to send a child away. I learned that after we moved to Moscow.’

Due to activist efforts, stigma is beginning to give way a little, especially in the big cities. Prominent journalist Arina Borodina, for example, went on a social media crusade this September on behalf of Muscovite Platon, a boy who was denied gym membership for being on the autism spectrum.

Borodina, a deft social critic with a fiery personality, raised such a stink that the gym was forced to publicly apologise. Young Platon, shielded from the drama by his parents, now has his membership back and continues to swim at the gym’s pool, which he loves. Of course, most experts acknowledge that people like Platon and Oxana are the tip of the iceberg.

Staying silent

‘Some parents are still compelled to stay silent, especially if they bought into fairy tales and decided to blame themselves for their child’s condition,’ Yelena, a mother of two who volunteers with special needs children in Moscow, told me.

Much like Nadezhda, Yelena doesn’t want me to publish her last name, although her reasons are different. Nadezhda wants privacy for her son, while Yelena says she doesn’t want to draw attention to her volunteering. ‘I don’t want someone to read this and think I’m trying to be a hero,’ she says simply. This is her condition for opening up about painful family history.

Yelena became drawn to volunteering after the death of her niece. Together with her sister, Yelena comes from a tough background. Just like Natalia Vodianova, she was raised by a poor single mother, and, also like Vodianova, Yelena escaped and went on to an altogether different destiny, albeit one as a successful businesswoman.

Yet while Yelena was putting herself through college, her sister ‘drifted’: there was a string of abusive relationships and substance abuse. Yelena’s niece was born ‘a very sick child’, and didn’t live past infancy. The death haunted Yelena.

‘After I had my own children, I kept thinking about the child that was lost,’ Yelena tells me. ‘So I had to find a way to start doing something for other people.’

Yelena sees parallels between treatment of autism and treatment of poverty in Russia. ‘People often have this fear, they think [being poor or having autism] is contagious,’ she says.

But like many people involved in bridging the gap between people with autism and neurotypicals, Yelena sees slow positive change encroaching upon Russia. ‘A few years ago it was possible to get a weird look from a colleague if they find out that you work with autistic children,’ she says. ‘Now most of my colleagues have Facebook, so they are more aware of the issues, and, actually, they want to help… Of course many don’t realise that helping can’t be a one-off, that it’s about commitment, but it’s all about tiny steps in the right direction'”

It is still common to see ‘autism’ used as an insult in Russia. Have an insufferable colleague or an uncommunicative neighbor? Why, they’re an autist (the Russian shorthand for a person with autism)!

On an official level, there is broad agreement that Russia’s most vulnerable members, and people with autism certainly qualify here, need better integration and more opportunities. It would benefit everyone by doing everything from alleviating the costs of running ineffective state care facilities to helping parents of special needs children to remain in the workface.

As Smirnova rightly points out, there is no government roadmap to follow. This is part of the reason why philanthropy has become a driving force for greater acceptance of non-neurotypical people. Russian civil society has surged ahead of the government on this issue, and now officials are working to catch up.

With people like Smirnova and Vodianova on the case, there is hope the catching up process will not take forever.

Article also appeared at opendemocracy.net/od-russia/natalia-antonova/we-re-right-here bearing the following notice:

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