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In Her World: Living With Autism In Russia

At first sight, six-year-old Vera Bondik doesn't seem like an unusual child. She looks just like other children her age. The difference is that she will never make eye contact with you, talk to you, or listen to you. She lives in her own world, which no one else can enter. Vera is autistic.

Vera was a full-term baby with no pathologies or complications. When she was four months old, her parents noticed strange behavior -- Vera would not make eye contact, smile, or respond to new things. The older she grew, the more obvious it became. Vera was not healthy.

For the first two years of her life, the doctors would cheer up Vera's mother, Alena Bondik, by saying that these oddities were within the normal development pattern. When Vera was two years old, the doctors in Abakan came up with a preliminary diagnosis: deafness. Alena then consulted with doctors in Tomsk who did not confirm that diagnosis.

Vera started sleeping only a few hours a day, she became almost unmanageable. She was already three when the autism diagnosis was confirmed. The doctors then said to Alena, "Hang in there, there are no methods to treat autism in Russia."

Vera's story is told by RFE/RL journalist Vera Trofimova and photographer Svetlana Panina.
Whether Vera will begin school with her peers depends on the treatment that she receives, or doesn't receive, in the next few years. For a stable improvement, Vera needs constant treatment. But her mother can only afford private therapy once a month. A single visit to a neurologist costs a significant share of her income.  
1 Whether Vera will begin school with her peers depends on the treatment that she receives, or doesn't receive, in the next few years. For a stable improvement, Vera needs constant treatment. But her mother can only afford private therapy once a month. A single visit to a neurologist costs a significant share of her income.

 
Alena sits with Vera. The only state-funded treatment that Vera receives is a visit to a local sanatorium twice a year. The rooms there look more like hospital chambers. According to Alena, there are eight beds in a room and meagre catering, while the treatment is limited to open-air walks, massage, and a short list of medical services. That is not enough. But any other medical help that Vera is supposed to receive is on paper only. There are no state-funded psychologists, neurologists, or autism specialists in Khakassia.
2 Alena sits with Vera. The only state-funded treatment that Vera receives is a visit to a local sanatorium twice a year. The rooms there look more like hospital chambers. According to Alena, there are eight beds in a room and meagre catering, while the treatment is limited to open-air walks, massage, and a short list of medical services. That is not enough. But any other medical help that Vera is supposed to receive is on paper only. There are no state-funded psychologists, neurologists, or autism specialists in Khakassia.
All the windows and doors are locked. Vera does not have the self-preservation instinct: she can step out of the window, run outside in her underwear, throw herself under a car, put her hand on a hot stove, and not shed a tear. The entire family lives in constant fear for Vera’s life.
3 All the windows and doors are locked. Vera does not have the self-preservation instinct: she can step out of the window, run outside in her underwear, throw herself under a car, put her hand on a hot stove, and not shed a tear. The entire family lives in constant fear for Vera’s life.
Vera sits on a bench at a playground. She longs for contact with other children, but the adults perceive her odd behavior as misbehavior. After her condition is explained to them, they usually tell Alena, "You should stay home."
4 Vera sits on a bench at a playground. She longs for contact with other children, but the adults perceive her odd behavior as misbehavior. After her condition is explained to them, they usually tell Alena, "You should stay home."
Vera in her room. "This verdict, 'You should stay home,' is a common thread in our life," Alena says. "It's like a cage we live in."
5 Vera in her room. "This verdict, 'You should stay home,' is a common thread in our life," Alena says. "It's like a cage we live in."
Therapeutic horse riding can help Vera, but it requires money and transport that the family does not have.
6 Therapeutic horse riding can help Vera, but it requires money and transport that the family does not have.
When Vera was a year old, she developed a sleep disorder, sleeping only two or three hours a day. Alena, raising Vera alone, fainted from sleep deprivation. Friends and relatives came in shifts to look after Vera at night.
7 When Vera was a year old, she developed a sleep disorder, sleeping only two or three hours a day. Alena, raising Vera alone, fainted from sleep deprivation. Friends and relatives came in shifts to look after Vera at night.
After years of searching, the doctors Alena found solved her sleeping problem. Now, Vera sleeps well, understands what her mother says to her, eats by herself, has learned to speak, plays development games, and expresses her feelings to her family.
8 After years of searching, the doctors Alena found solved her sleeping problem. Now, Vera sleeps well, understands what her mother says to her, eats by herself, has learned to speak, plays development games, and expresses her feelings to her family.
Vera is a very active girl. But sometimes she has mood swings, causing her to throw chairs or rip off the wallpaper.
9 Vera is a very active girl. But sometimes she has mood swings, causing her to throw chairs or rip off the wallpaper.
Vera watches the children in a kindergarten where she will not be accepted. The difficulties caused by her condition branded her as not ready for kindergarten. For Vera to attend a specialized day-care facility, her mother has to prepare a package of documents, and that would require more money.
10 Vera watches the children in a kindergarten where she will not be accepted. The difficulties caused by her condition branded her as not ready for kindergarten. For Vera to attend a specialized day-care facility, her mother has to prepare a package of documents, and that would require more money.
Alena and Vera are on their way to a private clinic. Vera cannot visit regular hospitals, since she is afraid of the crowds there. There are no specialized clinics for children with special needs; no discounts and no privileges. Alena cannot earn enough to pay for the tests because she spends all her time with Vera at home.
11 Alena and Vera are on their way to a private clinic. Vera cannot visit regular hospitals, since she is afraid of the crowds there. There are no specialized clinics for children with special needs; no discounts and no privileges. Alena cannot earn enough to pay for the tests because she spends all her time with Vera at home.
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