When someone asks Inna Sergiyenko, 49, what it’s like to be a mother of an autistic child in Ukraine, she replies with one word: “tough.”
Sergiyenko’s son Mykhaylo is one of more than 6,000 autistic children who live in Ukraine, according to the official statistics, although non-government organizations say that the actual amount could exceed 100,000 as many pediatricians, parents and teachers still struggle to identify autism.
Autism is a mental condition characterized by challenges with social skills, and repetitive behaviors. Children with autism also often have abnormal body posture, inappropriate social reactions, have restricted interests and avoid eye contact. Because of the range of symptoms, the condition is now called autism spectrum disorder.
Ukraine also lacks qualified tutors and guides to help children in kindergartens and schools, there are no state centers for autistic children, and they suffer a range of problems with employment and widely held stereotypes about them.
Inna Sergiyenko and her son Mykhaylo pose for a picture at the Olympic Stadium in Kyiv in 2016.
Getting a diagnosis
Eleven-year-old Mykhaylo was diagnosed with autism when he was two. At that time, his mother recalls, Ukrainian doctors couldn’t always identify autism at an early age: All pediatricians assured her that it was normal for a two-year kid to not to listen to parents, to be restless, and not to talk.
However, Sergiyenko noticed that Mykhaylo’s behavior was different from his peers’: Not only did he not listen to his parents, he hardly reacted to them at all. So when Sergiyenko and her son went on vacation to Israel, she took him to see a local doctor, who diagnosed Mykhaylo with autism.
Diagnosing autism at an early age is critical, because it’s easier to help a child to adapt and develop social skills. Sergiyenko said that at first she couldn’t believe the diagnosis, but the doctors in Israel were friendly and helpful. They recommended a therapist, who taught Sergiyenko how to attract her child’s attention and develop contact with him.
“I went through all seven stages of acceptance,” she recalls. “You always think that it only happens to someone else. Or that you will get a magic stick that resolves all the problems. But there isn’t any.”
Education problems
Back in Kyiv, Sergiyenko realized that she had no idea what to do next. She found only one specialized kindergarten for kids with autism with qualified teachers, but it was located too far from her home.
So Sergiyenko decided to create her own one.
Sergiyenko found tutors for kids, invited Professor Virginia Bassi, who now teaches at Argosy University in Orange, California, to train them, and accepted the first four kids to the kindergarten. At the same time, she created a charity fund called Child With a Future to help people with autism.
Now, Sergiyenko says, Ukrainian doctors are significantly better at identifying autism, and more kids receive a diagnosis when they are one-and-a-half to three years old. Susanna Kachmar, a psychologist at the Dzherelo Children’s Rehabilitation Centre in Lviv, agrees: Thanks to various information campaigns many parents bring their children to local doctors or directly to Dzherelo for testing when they notice symptoms of autism spectrum disorder.
However, there is still the problem of a lack of specialized kindergartens and pre-school centers: There are fewer than 10 such centers in Kyiv, according to autism.in.ua website.
However, most of the specialized kindergartens are private and expensive, and many Ukrainians can’t afford to send their kids to them.
Sergiyenko said some families are dropping out from her kindergarten because it recently raised the price to Hr 30,000 per month, but the kindergarten can’t keep prices lower, as is has to hire qualified speech therapists, art therapists, psychologists and tutors.
Sergiyenko said that, ideally, a specialized kindergarten will help autistic children keep up with the development of their peers, so they could eventually go to an ordinary kindergarten or school. That happened to her son, who soon started attending an ordinary private kindergarten with a tutor. Mykhaylo now attends a state school specializing in English, where the tuition is even more difficult than at an average school. However, not all autistic children can achieve that kind of progress.
The education law Ukraine passed in 2017 guarantees inclusive education for kids with physical and mental disabilities in schools and kindergartens. But Sergiyenko says that many teachers have never worked with children with disabilities before, and often don’t know how to communicate with autistic children.
Moreover, there is usually only one tutor assigned to a teacher, while there can be several kids with disabilities in one group.
However, Sergiyenko says that introducing inclusive education is an achievement itself, and many teachers contact her fund to hold seminars on autistic kids.
Acceptance
Sergiyenko says that the crucial thing for parents is to learn how to interact with their child, because autistic children think differently: They don’t automatically repeat other people’s actions and need additional motivation to do the simplest actions.
“He wouldn’t brush his teeth because you wanted him to,” Sergiyenko said. “You had to explain in detail that if he doesn’t brush his teeth they will decay.”
She also says that parents have to constantly speak to their children, even when they don’t respond or react.
Sergiyenko sometimes felt despair because of that.
She recalls that every evening she came to Mykhaylo’s bed before he went to sleep and told him how great it would be when he started to speak and what topics they would discuss.
Two years after being diagnosed with autism, Mykhaylo started speaking. However, he still has problems with his peers.
“Autistic children often don’t have proper social skills, and it can trigger conflicts,” Sergiyenko said. Like many kids with disabilities, Mykhaylo has experienced bullying at school.
Sergiyenko says that autistic people who are rejected by their peers can get very depressed, and some even develop mental illnesses. While autism itself is not a mental illness, recognition of this has only come recently in Ukraine: Sergiyenko says that only six years ago autistic children would automatically receive a diagnosis of schizophrenia when they turned 18.
But Sergiyenko said that Mykhaylo is optimistic about his future: He plans to become a doctor or a pharmacist who creates medicines. Apart from school, Mykhaylo also plays chess in a club, attends aikido, swimming and programming classes.
“Autistic kids are very interesting people,” she said. “They think in a different way and are very creative, which can give them a lot of opportunities in life.”
Editor’s Note: This article is a part of the “Journalism of Tolerance” project by the Kyiv Post and its affiliated non-profit organization, the Media Development Foundation. The project covers challenges faced by sexual, ethnic and other minorities in Ukraine, as well as people with physical disabilities and those living in poverty. This project is made possible by the support of the American people through the U. S. Agency for International Development and Internews. Content is independent of the donors.
