They’re right here: Autism in Russia

A few years ago, an autistic boy named Anton wrote an essay about life. “People rush. People swear,” it reads. “Now happy. Now serious. People bang and rattle. They're not shaggy. They get lost. Ginger. Deep. They skin things. People renovate houses and barns. People will endure a bit more...People are finite. People fly.”

Anton's unexpected expression of intuition and comprehensiveness attracted the attention of Lyubov Arkus, a Russian film critic. After meeting the author, a frenetic self-harmer who barely spoke, much less wrote, Arkus was stunned that a boy who could seem so disconnected from his surroundings could articulate such insight.

The essay became the initial inspiration for ‘Anton's Right Here,’ Arkus's devastatingly intense documentary which follows the life of a Russian autistic child through trauma, institutions, and an often cold reception from those who surround him.

‘Anton's Right Here’ is one expression of a steady social effort to spread awareness of autism. Last week, on World Autism Awareness Day, it won a Nika Award - one of Russia's top movie honours.

While no official statistics are available, estimates say Russia contains upwards of 200,000 autistic individuals. Diagnosis and treatment of conditions like autism presents a particular challenge in Russia, and Anton's story is just one drop in a sea of the world's struggle to comprehend.

Raising awareness of autism is an ongoing process taking place in Russia and all over the world - one that's come a long way from 20 years ago, but still has miles to go.

‘Defective'

Understanding of the condition, driven mainly by lack of information, is often wanting in the social community.

Roman, a Muscovite in his early 30s who asked that his last name not be identified, adopted an autistic child - a boy from his wife's previous relationship - when he married.

“I never thought my parents were prejudiced [against people with autism], so it was shocking to me when my own family wanted nothing to do with me when I adopted my son,” Roman told The Moscow News. “My mother actually used the word ‘defective' when describing my adopted son.”

Roman's parents vehemently opposed Roman's assumption of care of a person whom they considered to be less than whole, and his mother barely spoke to him for a year afterwards. Being forced to decide between his mother and his new family was difficult, Roman said, but “as a man, you have to put your foot down eventually...I knew I had no choice.”

Roman and his mother have now reconciled, to an extent, due to her advancing age and ill health. Yet Roman's experience remains a stark example of Russia's social incomprehension and, occasionally, even downright prejudice towards people with special needs.

Autism as a medical diagnosis didn't even exist until about 10 to 15 years ago, Yekaterina Men, president of Moscow's Centre for Autistic Problems (ANO), told The Moscow News. Previously, it was diagnosed as schizophrenia and treated with medication.

“For 90 percent of people, ‘autism' is just a modern word for ‘schizophrenia,'” Men said.

Even now, autism exists on paper in Russia only as an “early childhood” medical condition. The existence of autistic adults is not officially acknowledged.

Doctors' inability to diagnose autism in adults, Men said, is “a disgrace.” “It's like a person who has had diabetes their whole life going to the doctor at age 18 and being diagnosed with asthma, because diabetes is a ‘children's' disease,” she said.

Men's organization, ANO, is working with another non-profit, Vykhod, to appeal for an official government-approved diagnosis of adult autism.

Genetics and the environment

Autism is traditionally labelled as a development disorder. It affects information exchange in the brain by altering how nerve cells and synapses (signal bridges between cells) connect.

By the criteria outlined in the American Psychiatric Association's Diagnostic and Statistical Manual (APA DSM) IV, the disorder displays three general hallmarks: 1) an impairment of social interaction, 2) an impairment of communication, and 3) restricted or repetitive behaviour or interests. It normally manifests before the age of three.

The disorder doesn't necessarily affect learning, however. “Autists are incredibly teachable children,” Men told The Moscow News. “They are children who, connected with some concrete situation, have trouble communicating their needs. [The symptoms] are very individual.”

Though the condition exists in a broad range of permutations - often called the autism spectrum - autistic individuals are unable to fully verbally express themselves in a conventional way. They can have difficulty building and maintaining close relationships. In some cases, they develop obsessive habits like arranging objects in a particular way or pattern.

The disorder's origins, though extensively researched, are still largely unknown. Scientists have established a definite genetic link, but social and environmental factors are also thought to contribute.

“The current thinking about many, but not all, people in the autism community is that many... forms of autism are the result of an interaction between genetics and the environment,” said Stephen Edelson, director of the California-based Autism Research Institute, to The Moscow News.

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According to Edelson, some of the possible environmental causes being researched are pesticides and heavy metals. “We also realize that some forms - estimated to be about 20 percent - are purely genetic,” he said. “[But] there is still much more we need to know about the underlying causes.”

Childhood abuse of the mother may also contribute. JAMA Psychiatry published a research report in March which stated that women who were brought up under the “highest level of abuse” were three times more likely to bear an autistic child.

Stereotypes galore

Public understanding of autism is also afflicted by numerous deceptive stereotypes about its symptoms. Many people unfamiliar with the disease - spurred on by classic but misleading movies like ‘Rain Man’ - assume that all autistic people possess some genius ability like counting cards or ability to memorize unbelievable amounts of trivia.

This ability does exist in an estimated 10 percent of autistic people, dubbed “savants.” The most famous - Kim Peek, a ‘megasavant' and the inspiration for ‘Rain Man’ who could accurately recall the contents of over 12,000 books - died of a heart attack in 2009.

Peculiar geniuses, however, are quite rare among individuals with autism. Possession or absence of remarkable mental faculties should not be a qualifier for personhood, said Igor Shpitzberg, director of Our Sunny World rehabilitation centre in Moscow.

“Every person has hypothetically limitless potential, but each of us has some unique abilities that others do not,” Shpitzberg told reporters at a RIA Novosti conference on autism last week. “This is not a reason to reject people from society.”

Overmedication

Treatment of autism is poorly handled in Russia. The majority of doctors, still interpreting the disorder to be some relation of schizophrenia, address the problem with heavy medication.

“We have some children at our centre who are three or four years old. They're very cute,” said Men, the autism expert. “In Russia, to treat them, doctors give them unbelievable pharmaceutical cocktails which you would never in your life find recommended to a child anywhere else. But we've seen occasions where doctors prescribe this to a child of eight months old. There's no regulation.”

Western medicine tends to use a process called ABA (Applied Behavior Analysis) as opposed to pharmaceuticals to treat autism. ABA is behaviour therapy: scientifically-based techniques to help autistic people improve communication, social relationships, self-care, and positive behavior.

Treatment centres for autism are sparse in Russia. A handful of organizations - like the Fathers and Children Fund in St. Petersburg and the Moscow Centre for Curative Pedagogics - offer support and behavioral therapy services for autistic children. Elsewhere in Russia, treatment centres for autism and mental disorders in general are basically nonexistent.

The yellow brick road to understanding 

Developing awareness of autism - and mental disabilities as a whole - can be facilitated only through patient encouragement of public support, said Stephen Edelson of the Autism Research Institute.

“There is much discrimination against people on the autism spectrum worldwide,” Edelson told The Moscow News. “Accurate and honest media reporting is one of the important ways to increase awareness.”

To that end, the Institute is participating in an international conference ‘Autism. Challenges and Solutions’ in Moscow April 18-20.

Meanwhile, what remains for autistic individuals, their loved ones, and caretakers is to keep trying, said Roman, the adoptive father of an autistic son.

“Build your own support network,” Roman said. “Don't let yourselves be isolated. Don't let your child be isolated. [Society] never changes fast enough, but that's life.”

First published in The Moscow News.

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