‘Anton was and Anton is’ The life of the autistic man at the center of the documentary film ‘Anton's Right Here’
The documentary film “Anton's Right Here,” about a young man with autism, premiered in a special screening at the Venice International Film Festival in 2012. A year later, the motion picture’s director, Seance magazine editor-in-chief Lyubov Arkus, founded a center in St. Petersburg, also called “Anton's Right Here,” to provide assistance to people with autism. Arkus says she created the organization “because of Anton and for Anton.” In the four years she spent filming the movie, Arkus became very close to both Anton and his mother. To find out about Anton’s life today, Meduza special correspondent Sasha Sulim visited St. Petersburg and spent several days with him.
You’re reading an article released as part of Meduza's charity support program MeduzaCare. In April 2019, the program focused on autism spectrum disorder. You can read more about MeduzaCare (in Russian) here.
“Anton, button up!”
“I don’t have any buttons.”
“Where are they?”
“In my pocket.”
“Looks like you ripped them off.”
We meet Anton and his father, Vladimir Kharitonov, in the town of Koltushi, seven kilometers (about 4.4 miles) outside St. Petersburg. Anton is wearing sweatpants, a black jacket with bright blue buttons (the same color thread is sticking out through the top two holes), and a gray wool cap. At the “Seventh Kilometer,” as Anton calls it, is a cabin that belongs to Nina, Vladimir’s wife. For the past seven years, this is where Anton has spent his weekends, and in the summer he and his father travel 200 kilometers (125 miles) to the town of Malaya Vishera, to Anton’s home.
“Vladimir, what do you usually do with Anton?”
“I dig in the garden, and Anton comes up to me and says, ‘Dad, I want tea.’ And I say, ‘Anton, come on, get out of here.’ And he goes away. He runs somewhere, and then again it’s: ‘Dad, I want some yellow tea.’ So then I say, ‘Let’s go drink some yellow tea.’”
Not marriage, but love
Anton Kharitonov was born on July 13, 1987, to Rinata and Vladimir, a trolleybus dispatcher and a trolleybus driver. The boy arrived nine months after they were married. For years, Rinata (or Rita, as her friends and Anton called her) had trouble getting pregnant. “I’m grateful [to Rinata] that she traveled south and got fertility treatment,” Vladimir says.
Vladimir came to Leningrad from the town of Kingisepp, outside the city. Rinata was from Ukraine. Their family was never affluent: at first, they spent a long time looking for housing, then they saved for a refrigerator, and then for a washing machine.
When Anton was born, Vladimir says the doctors said he had a “big head,” and they hinted at potential abnormalities, but their son developed normally for the first few years of his life. Anton learned to read and write early, and he attended a normal kindergarten. And then one day the teacher said “something strange” had happened with him and he was “jumping and hopping around” all day long.
Around the world, autism is typically diagnosed within a child's first 18 months, when they start communicating with adults and other children. It was roughly around this time that Rinata went to Ukraine to visit her nephew, who’d been born the same year as Anton, when she realized that her son isn’t like most other children.
Vladimir left Rita when Anton was fourteen: “We spent 22 or 23 years together, and God willing maybe two of them were any good. Maybe we should have divorced sooner, but I felt really bad about it. And I kept wondering what my parents would say, and when we did divorce, what I heard was: ‘Oh, at last!’” Talking about his divorce, Vladimir repeats several times that he left Rita, not his son.
“Did you feel any guilt about Anton?”
“If there’d been no guilt, then why would I always meet with him and why would I send him money. Anton and I have always remained in contact. And I was always in contact with his mother, too.”
Following his split from Rinata, Vladimir remarried in the early 2000s, but after a few years he divorced again. Then, in 2009, he moved in with Nina Kononovich, a woman he’d met 40 years earlier. He drove a trolleybus and she operated a streetcar. Every day, they’d intersect at the last stop, “Solidarity Prospect,” and trade personal news: Vladimir bragged about his son’s early successes, and Nina would compare Anton to her own boy, the youngest of three.
In the mid-1990s, they stopped seeing each other, when Nina moved to America for the next 15 years. When she returned, they started meeting again. “When I got back, Vova told me about Anton. I didn’t know before that it was so bad,” Nina says. This summer, Vladimir and Nina will celebrate 10 years of cohabitation, though they never formally married.
“We have love, not marriage,” Vladimir explains, pouring beer into a ceramic mug.
“If only you drank a little less beer,” Nina tells him. “You know, I don’t think I’ve once in my life ever seen him sober. He’s spent his whole life with a beer in one hand, as far as I know!”
“I always tell everyone, and everyone agrees with me: with the son I’ve got, if I don’t have a little beer — at least two bottles — then I’ll be a jerk. Nobody understands this. It wears on your nerves!”
“Dad, I want tea.”
“Anton, we just had some. Relax. You’re going to chase away our guests with your tea.”
“I want to work so badly that I can’t!”
The “Anton's Right Here” Center opened in St. Petersburg in December 2013. The organization provides assistance to people with communication problems and individuals who need constant support from tutors. In 2016, the center’s founder — the St. Petersburg Out Foundation, which works with autistic people — launched another facility where students can learn basic trades, like sewing, carpentry, bookbinding, and horticulture. The centers also help autistic people settle into the city’s urban environment, escorting them to health clinics, cafes, and stores, and they even help with job placement. The workshop students who make the bags, postcards, plates, cups, pillows, and wooden mounts that are sold in the foundation’s gift shop earn a small wage, as well.
According to executive director Zoya Popova, the most important thing people with autism need is social contact with others not on the spectrum. This is why the center’s programs are designed so that the number of students doesn’t greatly exceed the number of tutors and staff. The St. Petersburg Out Foundation employs about 50 people, and there are roughly as many students attending classes every day, and up to 250 people involved in all the foundation’s programs.
Since the center first opened, staff at “Anton's Right Here” have had a group chat room where they share interesting, touching, or amusing phrases spoken by their students. Some of these quotes (like “I want to work so badly that I can’t!”) are now being printed on canvas bags and notepads, while others (such as “I’m prepared [to create] masterpieces for a beautiful woman” and “I’m terribly hungry for pancakes”) make their way to special posters and buttons.
Just three of the phrases in the group chat belong to Anton: “There’s streetcar-dad snoring”; “There are two blue doors there, and there stands Anton the Bunny”; and “Anton, what will you do after lunch?” “I’m going to walk around on the floor.” Anastasia Khlubova, one of Anton’s tutors, says he doesn’t speak very much. “Mostly he comments on his own actions,” she says. “Sometimes he remembers some trip or some person he liked being around.”
Anton and the other students come to the center at 10:30 in the morning and stay until 5:30 in the evening. Classes are held from Tuesday to Friday, and the curriculum is the same every day: workshop, group seminars, lunch, a movie, and then tea. You can check the schedule at any moment of the day: copies are posted in different places throughout the center.
In the mornings, Anton meets with his tutor, and together they formulate a plan for the day, gluing pictures of him onto a special sticky board, mapping out activities.
For the first 20 minutes, he’ll go on an indoor walk. Anton kicks off his rubber slippers and does laps inside the center. Every five minutes, if not sooner, he returns to the water cooler. “I’m drinking,” he says, narrating his actions. “Tasty water. The best water.”
Passing the other students, Anton sometimes goes up to his friend Joseph and wraps him in a bear hug. Joseph doesn’t enjoy these displays of affection, but he endures it silently, until the tutors intervene and help him express his feelings. “Anton, I don’t like being hugged!” he says finally.
The tutors rotate every week, so students learn to interact with different people. Anna Shutkina, who also works with Anton, says the center recently instituted a new rule: no hugging. “Not everybody — and this goes for the tutors, too — likes being hugged, so now we say that you can only touch others on the shoulder,” she explains. Zoya Popova says this is also a safety concern: “Students have difficulty distinguishing between loved ones and strangers, and trying to hug a random person at a bus stop could create a dangerous situation for someone with autism. So at the center students are invited to learn other forms of expression.”
Anton ignores the tutor and wraps his arms around Nastya and Anya, and then again Joseph.
“I’m walking,” Anton says, commenting again about what he’s doing at the moment. “Can I have some water? I’m already drinking. I’m already walking.” And then he suddenly remembers: “I want to drink some yellow tea.” Pointing at the sticky board, Anya tells him that he’ll get his first cup in a few minutes. To count down the remaining time, she gradually removes little tokens pasted to the board to mark the minutes. For Anton, tea is like a reward he receives for various completed tasks. He gets his first cup after his walk, and his second after his workshop. Students can choose from one of four: sewing, drawing, decorations, or ceramics. Anton is in the ceramics class.
In addition to the center’s tutors, there’s also a professional in each class who helps the students polish their work so it can be sold in the gift shop. Posted on the wall, there are prompts reminding students what to do in class: stick your picture up on the board, put on your apron, lay out your rags on the table, prepare your rolling pin, ask the teacher for your clay (“May I have clay?” Anton asks), cover the clay with a second rag, and roll it into a ball.
It’s hard for Anton to focus on class assignments for more than two or three minutes at a time. He repeatedly leaves the room or freezes in thought. Periodically, a tutor comes over and helps him with the task at hand: making a plate.
After rolling the clay pancake to the necessary thickness, Anton starts gluing the bottom. For this step, he takes a seat. “I’m going to sit. It’s better that way.” Nobody argues the point with him, and he goes on narrating his process. When the plate is finished, Anton gets a cup of tea and a sandwich. After the tea, they head to the corner store for his “crab chips.” Standing right outside the store, Anton finishes the bag in a few minutes. He devours the food, spilling some.
Back at the center, Anton says he wants to draw a traffic light, and he manages it in a few seconds. Anya says he often writes or draws things. He calls this “I’m going to write syllables.” Anton rarely produces entire words. Usually, he draws circles and crosses, and writes word fragments. Names are rarer. Sometimes you’ll see Rita, his mother’s name. Anya says “Rita” appears in Anton’s work on days when he’s feeling more contemplative than usual. “I walking,” Anton announces again. “This is better. I feel better now.”
“They said he was hopeless”
Until he was 14, Anton went to a remedial school on his own. After lessons, he’d walk home, open the front door with his key, warm up lunch, call his mother on the phone, and do his lessons. He also went by himself to special classes offered by the “Fathers and Sons” Foundation, which helps children with disabilities.
Then came 2004, when three events changed Anton’s life forever: his grandmother on his mother’s side died; his parents divorced; and he and his mother had to move to a new apartment, which is a traumatic experience for someone with autism. Anton suffered a breakdown, and for the first time in his life he was sent to a psychiatric hospital.
In 2008, working with colleagues and several famous filmmakers, Seance magazine editor-in-chief Lyubov Arkus started the “Open Action Cinema” project, creating public service announcements devoted to children in different at-risk groups. The first videos were meant to draw attention to children in need of medical aid. They were directed by Sergey Bodrov, Pavel Kostomarov, and Alexander Rastorguev.
Looking for new subjects and themes, Arkus then started studying the websites of dozens of different charitable foundations. At one organization — “Fathers and Sons” — she randomly clicked on an essay by a 14-year-old boy named Anton Kharitonov. Titled “People,” the text began like this: “People can be kind, happy, sad, kind, good, grateful, big people, small. They walk around, run, jump, talk, look, listen. They’re giggly. They go to bars. They're red. Short.”
That same day, Arkus shared Anton’s text with her friend, documentary filmmaker Alexander Rastorguev. “Sasha [Alexander] called me back 15 minutes later and said, ‘This is a movie,’” Arkus remembers. “And before the end of the call he said, ‘Find me this boy.’ I went to go look for him, not for myself, but for Rastorguev.”
Arkus contacted the “Fathers and Sons” Foundation, where she learned that the essay was written seven years earlier by a boy named Anton Kharitonov, who’d spent almost all this time at different mental institutions. “They said he was hopeless, that his brains had been fried over the years, and that they were pretty much gone now. That he was a vegetable,” she says.
In May 2008, Lyubov Arkus met Anton in person for the first time. “He was lying naked on his hospital bed, with bruises all over his body, and he was pumped so full of psychotropic drugs that it looked like he’d never come to,” Arkus says. She also met Anton’s mother, Rinata, who says she’d grown accustomed over the years to feeling ashamed of her own son and gotten used to side glances and accusations that she and Anton’s father were alcoholics.
“She lacked the internal resources and knowledge needed to interact with Anton. She was denied a normal diagnosis, and she had no chance of managing his breakdowns. And she had no alternative but to put Anton in the hospital,” Arkus says. “Rinata didn’t read books, but in another sense, in her own way, she was one of the smartest people I’d ever seen. She knew exactly how to respond to people and different situations. She was incredibly funny, assessing everything in some completely other language.”
Rinata, like the overwhelming majority of Russia's parents of children with autism spectrum disorder (ASD), didn’t know her son’s exact diagnosis. According to Zoya Popova, the executive director of the St. Petersburg Out Foundation, Russian hospitals often conceal autistic patients’ diagnoses, citing internal policies, even though it’s against the law. ASD affects children as well as adults, but in Russia “early childhood autism” is often re-diagnosed as mental retardation, schizophrenia, and other personality disorders, when patients reach adulthood.
The lack of proper diagnostics, Popova says, leads to gross underreporting in Russia. In 2013, the country’s Health Ministry accepted average global statistics, which say one in every hundred children is born with a disorder similar to autism, but the government’s official numbers still raise questions.
“In St. Petersburg, where the child population is 900,000, there are just 464 formally diagnosed cases of autism,” Popova says. “Ignoring the rest means denying that there is a significant number of people in society who perceive the world differently than we do.” She says this is precisely why the “Anton's Right Here” Center never asks for medical records: “All our students have behavioral and communication difficulties. If we see that we can help someone and improve his life, we’ll take him.”
“Anton's Right Here”
Until he was 14, Anton loved going to “Onega,” a summer camp for children with autism, Lyubov Arkus says. “The camp had a wonderful effect on him. He was happy there, but they could no longer handle him, as he got older,” she explains. In June 2008, Arkus bought four tickets to Onega: one for Anton, one for his mother, one for herself, and one for her cameraman, Alisher Khamidkhodzhaev. Three days before they were meant to go, Rinata was diagnosed with multiple myeloma (a cancer of plasma cells). They had to delay the trip, while Rinata was hospitalized to get her first course of chemotherapy.
“At first, I thought it was all temporary,” Arkus recalls. “I thought I’d go with Anton to the camp, then I’d hand over the footage to Sasha [Rastorguev], and then I’d go on with my life.” It wasn’t until September 2008 that Arkus says she realized Anton and Rinata had become a part of her life. After the summer camp trip, Anton wound up back in the hospital. One day, she joined his mother on a visit. “At first, he was on cloud nine. He was talking his head off, and scarfing down all the tasty things I’d brought him. But when Rinata said, ‘Well, Anton, buddy, we’re gonna go, and you behave,’ he stood up, went to the wall, and swung his head into it so hard that he splattered blood. Then one of the women in white coats rushed in and said, ‘Do you see how he behaves?’ When we got outside, Rinata turned to me and said, ‘Now you see, Lyuba. I told you that he’s not all there.’ And I told her, ‘Rinata, why do you say that? Two people close to him are leaving him in that hell and asking him to behave.’ I suddenly realized that Anton’s reaction was my own reaction to many situations in life. It’s just that I’ve never allowed myself … I’ve never allowed myself to smash my head into a wall out of pain and injustice.”
Arkus attributes Anton’s “inappropriate behavior” to the hospital’s atmosphere itself. She says the facility treated any human reaction other than total indifference as an “aggravation” that resulted in isolation measures like restraining him in his bed and increasing his medication doses. “Drugs not only adversely affect human health and can trigger irreversible processes in the brain,” Arkus argues, “but in the end a person loses all ability to live outside the hospital. That's how psychoneurological nursing homes make people ghosts of themselves.”
Over the next two years, Arkus did what she could to keep Anton out of these nursing homes. He spent about a year at the “Svetlana” community outside St. Petersburg, where people with mental disabilities and special needs live year round, relying on subsistence farming. At “Svetlana,” there were no fences, no hospital rooms, and no medication. While he was there, Anton learned how to chop wood, slice vegetables for salads, and help with chores. In the summer of 2010, however, he had to leave.
Out of complete hopelessness (Rinata was dying from cancer), Arkus returned Anton to the nursing home. “When we took him there, he cried, and it was the first time I’d ever seen his tears. People with autism express their feelings in other ways; Anton usually chewed on his hands. I knew what awaited us: he’d start to grow terrified, he’d start biting his hands, beating his head against the wall, and they’d take him to an observation room or the isolation ward, and inject him with powerful meds that would only make it worse. I told him, ‘Anton, I’m begging you. Have pity on me. I’ll take you. I promise you. Please have pity on me. Don’t worry and don’t scream.’ At that moment, he gave me his hand and said, ‘Anton's right here.’”
What happened next you can see in the documentary film: calmly and without saying a word, Anton accompanies Lyubov into the hospital and then to his hospital room, where he lies down on the bed and smiles. “He couldn’t do all this for himself, but he could for me,” Arkus says. “He has absolutely no social intelligence, but he has immense emotional intelligence — the subtlest and richest. He feels.”
Anton spent three shifts at the “Onega” camp in the summer of 2011. Then, in August, his mother died.
“Rinata once asked me if she could say goodbye to Anton,” Arkus says. “I couldn’t refuse, though I was very worried that his condition might get much worse, if he saw her in this state. Half of Anton’s panic attacks were accompanied by memories and screaming about how ‘they buried grandma.’ Rinata agreed with me. When she died, I couldn’t tell him about it directly. If Anton had experienced another breakdown then, I never would have pried him from the psychiatrists. What needed to happen was for his father and Nina to take him in.”
A veteran of the training apartment
Since 2014, Anton has spent the time between Tuesday evening and and Friday morning without his parents at a special “training apartment.” These assisted living accommodations, designed to help students learn how to live on their own, are one of the programs operated by St. Petersburg Out. The foundation has one “training” apartment and two permanent residences.
Students ride the subway home with tutors, who stay with them at the apartment all evening and all night, and then in the morning they accompany the students back to the center. Anton shares the training apartment with several other students — the number of roommates often changes, but generally it’s either four or five.
Anton is a veteran of the training apartment. In fact, the living space was set up specifically for him, and the other students are limited to single shifts of four and a half months. During this time, they learn to cook, clean, and go to the grocery store. Each student has their own program.
Evenings at the apartment are carefully planned, just like days at the center. First on Anton’s schedule is taking a bath — one of his favorite activities. “It’s his way of relieving stress. The water calms him,” explains one of his tutors, Natalia Elesina. Then it’s time for tea and making dinner: Anton boils pelmeni or pasta, dices some salad, and paces the apartment while the food cooks.
“It’s hard for Anton to take on any large tasks, so we come up with quick things he can do that he understands, where he can evaluate the results immediately,” Natalia says. “Not that long ago, Anton started learning how to clean the sink. He still doesn’t do a very thorough job, but we’re working on it. Generally, he’s more interested in physical activities: chopping wood, fetching water, and so on. It’s hard to apply these skills indoors.”
At the apartment, the tutors working with Anton use timers in the form of tokens to measure the time he spends on assignments and to show him how soon he’ll receive his reward, which he chooses himself: tea, a banana, or a strudel.
“Anton, please put on your pants,” Natalia tells him, as he emerges reddened from his bath.
“The pants don’t go on,” he says.
“How don’t they go on?” Natalia asks.
“They don’t go on well.”
“Try putting them on well.”
“Try pulling them up.”
Natalia says Anton has trouble expressing his state of mind in words: “When we see that his cheeks start turning red, or he starts licking his finger or laughing in this certain way, we know that he’s becoming anxious. If his condition escalates, he starts biting himself or tearing at his shirt.” Natalia says it’s useless in these moments to scold Anton or flood him with questions about what happened. It’s better to give him a few minutes of alone time, so he can calm down.
“He was schizophrenic, and he became autistic”
A few months after his mother died, Anton started living in his own apartment on Belgrade Street with around-the-clock volunteer care. It lasted about a year, but Lyubov Arkus knew it was a temporary solution, and the main person in the world who could help Anton was his father.
“When we appeared in his father’s life, his father had nothing,” Arkus says, remembering the first time she met Vladimir Kharitonov in the fall of 2008. “He’d just split up with his second wife, and he was living in a tiny room in a communal apartment at the edge of Petersburg. He’d spent his entire life doing terrible, hard labor, and he had no savings whatsoever. This was a naked man on the bare ground, and his family history was that his son lived without him and might be headed to a state institution.”
By the winter of 2011, Vladimir had already moved in with Nina, and he was living at her apartment with her adult sons. In other words, he wasn’t the only one who needed to be persuaded to take in Anton. Arkus says there were several meetings with Vladimir and Nina. She and Anton visited them, and they’d take Anton on the weekends and then bring him back. “I explained what would happen with Anton, if he ended up at a nursing home. Then I explained my own situation: my mother was ill at the time, and I couldn’t take Anton. Then I said I’d buy him a home,” Arkus says. In the fall of 2011, Lyubov Arkus bought Anton a home in the village of Malaya Vishera, 200 kilometers (125 miles) from St. Petersburg, and registered it in his name. A significant part of the “Anton’s Right Here” film budget was used to make the purchase, which was possible because crew members waived their fees.
Arkus thought of everything: besides the house and the land, Anton also had a pension and his own apartment in St. Petersburg that could be rented out, which would cover Anton’s living expenses. (By this time, his father was now retired.) Most importantly, Arkus spent these months working on the creation of a foundation that was supposed to become Anton’s primary guardian and provide him with not only daily classes in workshops, but also protection from any unforeseen circumstances.
One of the last arguments Arkus used when negotiating with Anton’s parents was her film. “When I showed them the film about Anton, Nina said something that brought me to tears, even though I’m not a sentimental person,” Arkus remembers. “She said, ‘How can someone live if his own son is in a nursing home?’ If she hadn’t supported Volodya — and she has enormous influence over him — then we don’t know what would have happened. I’ll always feel a sense of gratitude and partly guilt towards her, because I’ve done quite a lot to complicate their lives. Although I’d also like her to love Volodya and Anton more.”
“Has the film changed a lot in your lives?”
“It stuck us with Anton,” Nina says with a smile.
“It didn’t change anything! Anton was and Anton is,” Vladimir says.
“But did you look at him any differently after the film?”
“He’d always been schizophrenic, and suddenly now he was autistic. It got a little easier, maybe,” Nina admits.
“No, Nina,” Vladimir disagrees. “If Anton had been somewhere, I would have [taken a job] as one of those security guard assholes, and I wouldn’t have these problems. But as a father I couldn’t do that. I’ve got a conscience. How would I look people in the eye?”
Recalling their conversations with Arkus, Vladimir and Nina insist that no one had to persuade them to take in Anton. “When Lyuba said, ‘Volodya, we’re buying you a home,’ everyone told me, ‘Vovka, there’s no way they bought a house for you for free. They’re going to take away your room and you’ll be left without housing,’” Vladimir says. According to Nina, they would have taken in Anton without the house, though it would have been more difficult in that case. After all, she says, people tire of even their own children, and it’s no easier with other people’s kids.
“Vladimir and I often disagree when it comes to parenting. I tell him that Anton needs to stay busy, but he doesn’t give him anything to do,” Nina says.
“If it were your son, you’d be singing a different tune,” Vladimir answers.
“If it were my son, I’d still make him do something. Anton is sick in the head, but not in the arms or the legs. He’s not even sick, he’s just different, as they say. But his dad is still afraid that little Anton will rip his shirt. And Anton hears this and he wraps his dad around his finger. He’s not such a fool. He understands everything.”
According to Lyubov Arkus, when Anton doesn’t have a clear, planned daily regimen — like at the center or the apartment — he also becomes anxious. “Anton’s dad makes sure that his son is well fed, properly dressed, and bathed. If Anton has a runny nose, his dad worries. But when I say that Anton needs to be given assignments all the time and be nearby, when he performs these tasks, his dad doesn’t understand.”
“Why don’t you give Anton anything to do?” I ask Vladimir.
“I’m a busy man myself,” Vladimir says.
“You’re retired now. What could possibly be so urgent?” Nina replies angrily. “It’s always the same excuse: ‘Don’t touch him. He’ll rip everything.’”
“Nina, sweetie, I’ll handle this, but take it easy.”
“And how does he respond to your requests?” I ask Nina.
“He huffs and he puffs, but he does it,” Nina says.
“Just try to say no! No tea for you then,” Vladimir laughs.
“Mama Rita died?”
The first time Anton set foot in the “Anton's Right Here” Center, he was terrified. Lyubov Arkus says he took one look at the large number of people and decided that it was some kind of institution like a nursing home. “The first time I took him there, he bit his hand and ran off. And, old fool that I am, I caught up to him and said, ‘What’s wrong with you? I did this for you! It’s called Anton’s Right Here. I put my whole life into this! I’m not a filmmaker anymore — I’m doing God knows what now!’ And he just looked at me and in his own way made it clear that he doesn’t need all this — he just needs me,” Arkus says.
Arkus says it took Anton almost two years to acclimate to the center — far longer than the other students for whom it became a second home. She says Anton has a fear of collective living, and he’s happiest in one-on-one settings, not in groups of people. Gradually, though, thanks to the efforts of the center’s staff, Anton grew accustomed to his activities and even started regularly spending several weeks a year at summer camps organized by the St. Petersburg Out Foundation.
Anton’s parents eagerly await these few weeks. They say it’s the only time in the summer when they can relax. (The “Anton's Right Here” Center only operates from September to May.)
While we’re talking at the house at the “Seventh Kilometer,” Vladimir suddenly brings up Rinata’s death. “About three years ago, the guys from the center asked me to talk to Anton about his mother’s passing. And I asked then, ‘But why? He doesn’t care.’ So he and I come to Malaya Vishera, and I ask him, ‘Anton, did Uncle Vasya die?’ ‘Yes, he died.’ ‘Did Grandma Tonya die?’ ‘Yes, she died.’ ‘Did Momma Rita die?’ ‘Yes, she died.’ And that was it. No more questions. Sure, sometimes Anton asks, ‘Rita died?’ And I tell him, ‘Yes, she died.’ And he says, ‘But when will she wake up?’ And I say, ‘Anton, the time will come and momma will wake up.’”
In 2015, Anton’s condition deteriorated considerably. Arkus attributes it to a range of factors: the loss of his mother, which he couldn’t help but feel, being removed from “his Lyuba,” who had now devoted herself completely to the foundation, and powerful medications he’d become hooked on during his endless hospitalizations. “These pills supposedly relieve the symptoms, but really they immobilize people,” Arkus says. “You become a complete dunce, you don’t move your arms or your legs, and you sit there with your mouth open, drooling and glassy-eyed. You don’t act up and you’re perfectly quiet, while your internal state only gets worse from this.”
From 2011 to 2014, Dr. Leonid Libin oversaw Anton’s condition. According to Arkus, Libin is one of the few psychiatrists in Russia working on the study of autism. She met him when Anton was taking what she calls “exorbitant doses of neuroleptics and aminazine with haloperidol.” Libin helped Anton get off these medications gradually. Withdrawal syndrome in these cases can lead to unpredictable consequences, which necessitated constant blood tests and measurements of Anton’s blood pressure. “We went to him twice a week. He never took any money from us, and eventually he became our main friend.”
In 2014, Dr. Libin died, leaving no one to supervise Anton’s condition. Anton was hospitalized in a private wing of the Bekhtereva Clinic, where he spent three months in a separate hospital room with around-the-clock care from foundation volunteers. Ever since, he’s taken only the required minimum of medications.
“Compared to what Anton was like before the Bekhtereva Clinic, he’s now a fairy tale, not a child,” Vladimir says. “Before the hospital, he broke everything in sight. In his room in [Malaya] Vishera, the dresser and the couch are broken, and the handles have been ripped out of the window panes.”
“How’s your bunny doing there?” I ask Anton about the toy I saw in his room. Besides the blue rabbit, there’s just a bed, a chair, and a small dresser.
“He’s doing good.”
“And what’s his name?”
“Because it’s the best!”
“And who gave him to you?”
“What Lyuba! That’s one of my grandchildren’s toys,” Nina chimes in.
According to Vladimir and Nina, Lyubov Arkus has stopped calling them lately. They don’t say it outright, but it’s clear that they’re somewhat upset with her.
“She has her own problems, her own family. The Moor has done his duty, let him go,” Nina says.
“Anyway, we’re thankful. We’re enormously thankful to her,” Vladimir repeats several times.
“Do you wish Lyuba would call more often?”
“I wish the guys from the center would come to Malaya Vishera more often to visit Anton,” Vladimir answers quickly.
“Here in Vishera, you walk down the road with him and it’s all: ‘The grass is green.’ ‘Yes.’ ‘The dirt is brown.’ ‘Yes.’ ‘The doors are green.’ ‘Yes.’ That’s the whole conversation. It can drive you crazy,” Nina says, smiling.
“He doesn’t get drunk. He gets sick.”
“What do you love more? Me or pizza?” Lyubov Arkus asks Anton, meeting him at a march on April 2, World Autism Awareness Day. He hasn’t seen her for several months, and his eyes start to glitter when they meet.
“Really?” Arkus says, surprised.
“I love Lyuba!” Anton reassures her.
Just five years ago, Anton took up almost all the space in her life, Arkus says. “There was room for nothing but Anton, and that couldn’t continue forever,” she explains. “My objective wasn’t to wean him off me or disappear from his life, but to build everything in his.” Almost 11 years had passed since they’d first met, and now St. Petersburg had an entire institution created to ensure a normal life for Anton outside any nursing homes. “All my decisions related to Anton were dictated by his heartbreaking defenselessness,” Arkus says. “The most important thing for me was to do it so the whole system for protecting Anton from the nursing homes could work without me and without his dad, so it was tied to a foundation.”
“Do you still fear for Anton?”
“I’m afraid that I won’t live long enough to say I’m finally satisfied,” she answers. “I don’t think I could ever say that. I’m afraid that something will happen with his dad, or with me, or with the foundation, and Anton will go back to the nursing home, which is a kind of hell on Earth. It’s worse than a concentration camp. Anton’s life today, of course, is full of sorrows, problems, and difficulties, like with anyone else. But life in the nursing homes is death. A living death.”
Arkus says on those rare days (a few times a year) that she can dedicate to Anton, he doesn’t connect with her immediately. “He says, ‘Lyuba is here!’ He lets me kiss him, and then he runs off. At some point, I catch him, and we talk. I apologize to him for not being around, and I explain perfectly seriously where I was and what my life is like now. And eventually that incredible smile spreads across his face, and he starts hugging and kissing me, and then he gives me his hand, and we go for a walk.”
While I'm a guest at the “Seventh Kilometer,” Vladimir and Nina manage to show off several recent additions they’ve made to the house, as well as some seedlings under artificial lamps and three dogs and cats they’ve adopted. Towards the end of the visit, while we’re sitting in the kitchen and talking, Vladimir digs out two ceramic mugs.
“When I was given this mug,” Vladimir says, pointing to the regular-sized of the two, “I said, ‘You know, daddy Kharitonov likes drinking beer. Let Anton whip up something a bit bigger.’ And so he did.”
Printed in big letters on the second cup, which looks more like a beer mug, are the words: “Daddy Kharitonov.”
“And why aren’t you drinking from it?”
“I don’t want to break it,” Vladimir says.
“He doesn’t drink beer from mugs. It’s always straight from the bottle,” Nina says, selling him out.
“I want to drink yellow tea,” Anton says, coming into the kitchen. While we were talking, he’s managed to lie down in his bed several times, walk to and from the courtyard, and stop by the kitchen.
“For a while, after every word, he would say, ‘It’s okay, Anton’s right here,’” Nina recalls. “‘I want yellow tea, it’s okay, Anton’s right here.’ ‘I want to eat right now, it’s okay, Anton’s right here.’ It drove me through the roof! And I’d tell him, ‘Okay, tell me what’s so great about Anton being right here?’ Basically, I got him to stop saying it, but I don’t know how to stop him from asking for the tea.”
“Nina, why do you stick around for all this?” I ask, while Vladimir is outside smoking.
“We’re responsible for those we’ve tamed. And where am I supposed to go? Vladimir can’t manage him on his own, though he’s putting on a show in front of you,” she says.
“It’s fair to say then that you just love Vladimir a lot?”
“Not at all. I’m only with him because of Anton. I feel sorry for Anton,” she says, continuing in a whisper. “I could send them far away for a long time and go live on my own. But what would that be? He’d get drunk, and what about Anton? He can’t even make a phone call, if something happens. Sometimes you call them in Malaya Vishera and you can’t get through. You go crazy wondering what’s happened. When he’s gone [drunk], I can’t get through, and I’m sitting here, losing my mind, and I don’t know what to think! Only Anton keeps me here, though I can't say I love him very much.”
“Vladimir, do you love Anton?” I ask him, once he’s back.
“That’s an interesting question. He’s my son. When Anton was still little, he once asked my mother, ‘Grandma, do you love drunk daddy?’ And she said, ‘Anton, sweetie, he’s my son. I love him drunk or sober.’ It’s the same for me with Anton. But he doesn’t get drunk. He gets sick.”
“I want to go to the store now,” Anton says suddenly, interrupting Vladimir.
“We’re going. We’re going,” his father answers.
Want to watch the documentary film “Anton’s Right Here”? Click here. Interested in donating to the “Anton’s Right Here” center? Visit the foundation’s website here.
Translation by Kevin Rothrock