In Her World: Living With Autism In Russia

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.

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."

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.

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.

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.

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.