When Lyubov Arkus first started making a documentary about autism, she never thought that it would transform her life, then she met Anton.

In April 2008, while researching film projects for a director friend, I came across an essay a boy with autism had written when he was 14. “People”, it was called. “People sit, die, take off their socks,” I read. “Cheerful, serious, normal, smashing, mischievous, red-haired, deep.” And further on: “People endure, people don’t endure...at the end, people are finite. People fly.”

Really? I thought. Did an autistic boy really write this? This was the cycle of a human life, perfectly distilled. I knew next to nothing about autism, but as a film-magazine editor I’d worked with texts all my life, and this one was beautiful. 

I thought there was potential for a documentary. The director agreed. “Find the boy!” he said.

His name was Anton Kharitonov.

At that time in my life, some days were good and some not so good. My marriage had ended and my daughter had moved to Moscow for her PhD. I went through the motions because that was what adults did. I had no inkling that a boy with autism was about to take me on a journey that would prove transformative for me—and pioneering for Russia.

Within a couple of months, I’d found Anton’s mother. Rinata Kharitonova lived in a rundown flat in St Petersburg. Anton, now 19, was doing a stint in a psychiatric hospital.

 

"I would learn that staff in psychiatric hospitals could be cruel. They considered autistic patients less than human because they were incapable of adhering to the niceties of everyday life"

 

It was June 8, 2008. I sat in my car outside the hospital, waiting for Anton and his mum. I knew he didn’t write any more. I had no expectations. 

He was all angles when he walked out the hospital’s doors. I felt sorry for him. He scared me too, because I knew he tended to bolt and bite himself. But there was something else—he had presence. He got into the car as if he owned it, silent and with unfocused eyes that seemed to look right through you, quickly judging if you were worthy of his company.

 

Anton on the beach
Anton Kharitonov was about to become very important for autism in Russia

 

Over the next couple of years, I would learn that staff in psychiatric hospitals could be cruel. They considered autistic patients less than human because they were incapable of adhering to the niceties of everyday life—of saying “please”, “thank you” and “have a good day”. And I’d learn that Russia has few programmes for autistic people and no overriding organisation to ensure that everything works smoothly. So things don’t.

I arranged for Anton to go to Camp Onega—a summer camp for kids with problems. Located at Onega Lake, some 270 miles from St Petersburg, it was one of the few places in the country that offered a haven for these kids and a break for their parents. Anton’s visit was from June to August 2008. The funding for Anton’s stay was dependent on our filming while he was there. A cameraman, Alisher Khamidkhodzhaev, came with me.

At the time, we weren’t making a film about Anton. We were speaking to parents of kids at the camp about their challenges and fears. I tried to make contact with Anton over the few weeks we stayed there, however, through two things I love to do: cooking and hugging. I just wanted Anton to stay with me, not run off.

 

"At the hospital, where I’d first met him, he was treated with such powerful psychotropic drugs, he was turned into a vegetable. Now, out of the hospital and living with his mother, he talked and looked bright, alert and sunny."

 

One day at the camp, we were standing on the bank of the river when he hugged me for the first time. He’d approach, scurry away, then approach again. Finally, after what seemed like forever, he stayed with his arms around me. Before that moment, it was as if he was on the fringes, not quite real. From then on, he was always there.

When the camp ended, I took Anton home to his mother.

Rinata had cared for Anton as a single parent ever since he was 14, when his father left. Like any parent in Russia with an autistic child, she was scared of what the future held. I told Rinata, “I’ll keep in touch.” That was it. Or so I thought. Before I could leave, she told me that she’d been diagnosed with an aggressive blood cancer and she’d undergone some treatments. I didn’t question why she told me. This wasn’t about her. It was about Anton. 

A few months later, Alisher and I visited Anton to see how he and his mum were doing. It was like he was a different boy. At the hospital, where I’d first met him, he was treated with such powerful psychotropic drugs, he was turned into a vegetable. Now, out of the hospital and living with his mother, he talked and looked bright, alert and sunny. He smiled! Alisher and I looked at each other and shouted, “We have our film!”

So it began—a film about Anton’s transformation. At least, that’s what I thought at the time.

 

Anton smiling

 

During filming, there were lots of issues to deal with. There was Rinata’s illness and hopes raised and then dashed by the failure of two bone-marrow transplants. As she underwent treatment, Anton was in and out of the psychiatric hospital. I remember one visit when we sat in a sterile room, talking quietly and eating food I’d made. Then it was time for Alisher and me to go. Without saying a word, Anton stood up and started to bang his head against the wall. BAM. BAM. Blood streamed down his face.

In that moment, looking at the despair on Anton’s face, I recognised myself. Before, I thought he was a sick kid. What I recognised was an emotional exuberance in him that I had myself. Like Anton, I was over the top. If I loved someone, I loved them completely. If I was upset, I let it show.  People said, “Moderate yourself.” Or, “Don’t cry.” Or, “Don’t love. Hold yourself back.” And, unlike Anton, I’d learned to edit emotions as if they were a film. But lately, I was waking up in the morning with one terrifying thought: “Who am I?”

Anton helped me to answer this.

 

"...this wasn’t a film about autism so much as it was about being human."

 

We both had a need. He was the only person in my life who let me love without any holding back and who loved me the same way. I was three when my father died of a brain tumour, but I remember him very well. All his family was lost during Stalin’s purges. I was the only blood relation he had. He always kept me on his lap, safe and protected. And I wanted to be loved the way my dad had loved me.

One day ran into another. I kept helping Anton and he kept helping me. In February 2009, we’d collected money to enable us to send Anton to Camphill Svetlana, some 90 miles from St Petersburg. It’s the only place in Russia where individuals with special needs can live together, with volunteers, and are not treated as patients.

But not long after he got there, I was called and they asked me to come because he was acting out. Of course he was! His volunteer friend had left the camp and he felt desolate, and his mother was dying. But I didn’t go. I had too much on my plate. My mother, who has Alzheimer’s, was living with me and Rinata had moved in as she waited to die.

That autumn, I had to take Anton from Camphill because he didn’t fit in there and kept running away. Then I had to put him back into hospital where it was rough for him. I told Alisher, “You must film my betrayal of him.” I wanted people to understand this wasn’t a film about autism so much as it was about being human.

 

Anton and Lyubov embrace
Anton and Lyubov embrace

 

The hospital was an hour away from St Petersburg by car. Anton was sobbing and biting his wrists, which were covered in blood. Finally, I pulled the car over to the side of the road. We got out and I took him by his shoulders.

“Anton, have pity on me,” I pleaded. “If you’re like this, they’ll take you to isolation. You must be normal. I promise I’ll do my best to get you out.”

All of a sudden, he stopped crying and put his hand out. “Anton is right here,” he said. And he smiled. He was saying yes, he understood. When we arrived, he allowed himself to be escorted to the ward and then lay obediently on his narrow bed. I started crying. “I’ll come back,” I promised him.

The day I was able to take Anton from the hospital was bittersweet. We’d worked hard to make sure he was named on the title to his mother’s flat—no easy feat in Russia where you’re not allowed to own property
if you’re mentally ill. I set him up with carers at the flat. During the day, he’d come to the magazine office where I’d arrange his schedule—swimming lessons and therapy workshops.

Throughout this was a growing worry: what was going to happen when Rinata died? There were no services for young adults like him. 

I decided to look for his father. About four months before Rinata’s death, I found him. He was a trolley driver and had started a new family. He was reluctant to get involved at first, but I showed him footage we’d shot of Anton smiling and talking. He changed his mind and I started to bring Anton round so they’d get to know each other again.

I wanted to show him what I’d learned: as long as you open yourself up, there are connections, not differences, between people. Not long after, in August 2011, Rinata died. 

The film Anton’s Right Here was released in October 2012 and shown at film festivals in Russia where it received prizes at several major Russian film festivals, as well as in Tunis and throughout Eastern Europe. The main prize it received was at the 69th Venice Film Festival in September 2012.

After the film was shown by the First TV Channel—Russia’s main TV channel—letters flowed in. Autistic individuals and their families needed help. That’s when the idea of a foundation began to take shape in my mind. It would be a place for them to go, a resource.

 

"When people tell me I’m a hero, I say, 'No, I’m not. I’m just human.'"

 

Talking to potential sponsors to raise money for the foundation is the toughest thing I’ve ever done.  When I tell them that, “This boy used to bang his head against the wall and now he doesn’t,” they don’t see that as a result. You can give drugs or wheelchairs to other sick kids but the only thing that works for autistic kids is genuine human contact.

The foundation, called Anton’s Right Here, officially opened in December 2013.  It’s Russia’s first-ever centre for adults with autism, located in a warren of rooms in a pre-war building in St Petersburg. The bright reception area has benches, posters, a jar for donations. There are about 75 young people and adults—I call them all “kids”— there right now with autism and other psychiatric disorders. It’s not quiet but it’s not loud either. When I arrive the “kids” swarm me, cadging hugs and kisses. I’m in my element.

I have two important tasks: to raise funds for the centre and to attract the right people to it—people who are prepared to devote themselves to the kids. Those with autism need a respite, a place to learn and socialise. I have to find one million Russian rubles (£10,000) a year just to keep the centre going! But I can’t give up on Anton and the others—they don’t give up on me.

When we started to film, Anton was 19. He’s now 28. He couldn’t live with his father at first as he lived in communal housing with several families, and his father and new wife shared just one room. The Foundation team purchased the family a house in the countryside near St Petersburg, where Anton now lives. This means he doesn’t have to go back to the psychiatric hospital.

I’m still very much a part of his life. In the summer of 2014, I rented a dacha close to St Petersburg and we lived there with a tutor so Anton could refresh and work on his speech and motor skills. I got bikes and we went cycling in the countryside.

This past year, the Foundation held their second festival to raise funds for the organisation. It was attended by over 2,000 people and raised around half a million rubles (almost £5,000), an important sum for the Foundation. There was also a kiosk where crafts made by those attending the organisation were for sale, and some of the students put on a musical.

The festival was covered by national TV. It was a big success. Anton wasn’t present, as he doesn’t feel at ease in big crowds.

With their unedited emotions, the kids remind me every day of what it’s like to be really, unreservedly loved and to love back in return. When people tell me I’m a hero, I say, “No, I’m not. I’m just human.”

As told to Lisa Fitterman

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