Organization aids Bulgarians on autism spectrum

Antonio Petkov says he can't remember when he first heard that he was autistic. The 19-year-old has what experts call high-functioning autism — he has no physical impairments, can communicate with other people and lives independently. Since graduating from school in the summer, he has worked as a systems administrator at a software company. All the same, the world can feel incredibly complicated, he told DW. "I've always had problems when I have to talk to people, when something doesn't go according to plan, when people don't follow rules and when there's change," he said, adding that he has a hard time approaching people and talking to them. "I worry about what they think about and expect from me."

When faced with making a decision that isn't based on logic, he freezes up. He remembers that once when he was out for a beer with co-workers, his parents got in touch to ask when he was coming home. "I wanted to stay and didn't know how to decide, so I thought about it for hours," he said. "I often get caught up in those kinds of thought spirals and mental blocks."

'Trouble asking questions'

Tsvetelina Georgieva, a 29-year-old woman who lives in a housing complex made of prefabricated buildings on the outskirts of Sofia with her father, is in a situation similar to Petkov's. She enjoys Bulgarian folk music and going for walks, but gets anxious about speaking to people. "I don't know what they will ask me, I don't know what to say and have trouble asking questions," she told DW. She often needs time to sort out her thoughts and respond to a question, and she finds it annoying when people interrupt her.

Like Petkov, Georgieva works for an IT company, where she transfers information to databases. They both enjoy their jobs, and they like computers. "Autistic people are very good at repetitive, monotonous activities. But they get tired faster," said Ana Andonova, who runs the Center for Social Rehabilitation and Integration with Priority on the Autistic Spectrum in Sofia. Petkov and Georgieva have been coming here since they were children.

A term used as a slur

"People on the spectrum are easily overwhelmed, their brains process information, impressions and emotions differently," Andonova said, adding that that can be exhausting. Their reaction to change or disappointments can be violent, although that reaction is sometimes delayed, she said. Georgieva goes silent and cries when she doesn't know what to say, and used to bang on the table a lot. Petkov said sometimes his outbursts came days after an incident such as someone being rude to him at work.

"All of a sudden, pressure that's been building up inside has to come out," said Petkov, who has taken up boxing. He said things had improved since he left school. Like many people on the spectrum in Bulgaria, he faced bullying by his peers because he was different — he was called "autistic" as a slur. He took to making satirical video montages and memes, if only for his own enjoyment. "I have a very ironic sense of humor," he said. 

Autistic people are all individuals

High-functioning autism is the exception. "Autism is a spectrum; no two autistic people are the same. Research calls people on this spectrum neuroatypical," said Mihaela Barokova, a psychologist doing research for a World Health Organization autism study at the New Bulgarian University in Sofia. "Neural connections are formed differently or not at all in neuroatypical brains," she said. That disrupts social interaction and leads to isolation. "Communication including pronunciation, volume, rhythm and the ability to speak may be impaired," she said. "Stereotypical actions like tics and fixations often occur."

The importance of structure, rules, order and routine

There is no official estimate as to how many autistic people there are in Bulgaria. The 2019-20 school year listed about 25,000 school children with special challenges. The number of people on the autism spectrum outside the school system and among adults who have never been diagnosed is an unknown. The US health protection agency, the Centers for Disease Control and Prevention (CDC), estimates that autism affects one in 54 children worldwide. Yet it is still a relatively unfamiliar phenomenon and people diagnosed as autistic and their families can often feel a sense of shame. "The biggest problem for most people, that is 80% of parents, relatives and children affected in Bulgaria, is getting reliable information," says Barokova, adding that the second biggest problem is access to therapy and support services.

There is no cure for autism, but people on the autism spectrum can learn to train their social and communication skills. In the early 2000s Bulgaria began providing autism therapy at centers like the one run by Ana Andonova. She has a child on the spectrum, so she knows from experience that "structure, rules and routine in all areas of life are incredibly important." The children should not be isolated, or given preferential or special treatment — they need social contact, rules and boundaries, she says. "It's important for autistic people to practice social interaction over and over again."

Helping autistic people with their everyday problems is a tough, never-ending task for parents and therapists. It can take years for any kind of success to be noticeable, while regression can happen in a matter of weeks. "The center has helped me a lot to deal with people better. I would say that today, I'm not so autistic anymore," Petkov said.

The pandemic lockdowns and social distancing rules affect people on the spectrum more strongly. Georgieva hasn't been to the office since March 2020 and misses lunch with colleagues. Petkov had to put boxing on hold. The therapy center had to reduce its services during the pandemic.

'I want people to know that autism is not a disease'

Watching the US TV series The Good Doctor, a story about an insular but brilliant autistic surgeon who is also hopeless in social situations, helped Petkow during the lockdown. Such series and films help popularize autism, says Mihaela Barokova — "but the hero always has high-functioning autism, which is not representative." Petkov enjoyed the series "because it shows that autistic people can be useful. I want people to know that autism is not a disease and autistic people have many abilities."

"I don't want to be marginalized, I simply want to belong," he said.

This article has been translated from German.