April 2 marks World Autism Awareness Day
, an observance designated to draw attention to the millions of people worldwide who struggle with autism. In Azerbaijan, families with an autistic child must cope with this difficult disorder with virtually no support, but as a result of extensive reporting on autism and the lack of services for affected families by RFE/RL’s Azerbaijani Service
, “Radio Azadliq,” the government has finally begun to sit up and take notice of the problem, a local NGO reports.
Autism is a developmental disorder that can severely hinder communication and social skills, with the onset of symptoms typically beginning in the first three years of life. Children with autism often need intensive therapy, and meeting that need is especially challenging for parents in Azerbaijan, where the disorder is not well understood and minimal resources are available.
In early March, Azerbaijani video journalist Vusala Alibayli visited the Autism Psychological Assistance Center in Baku, which is the country's sole provider of specialized therapy and special education for autistic children.
While at the center, Alibayli met Nubar Ahmadova, who attends sessions there with her daughter Sevda, and says children like hers need much more professional attention than they can get in Azerbaijan.
“They need more teachers and more training,” Ahmadova said. “The positive effects depend on more communication and better training.”
The center’s director, Chichek Mammadli, says she has to rely on a mostly volunteer staff to work with the children, as government funds allocated to assist autistic children have not been dispursed because the disorder is not officially recognized by the Health Ministry. This means families are not entitled to benefits to help cover the cost of treatment, and the center does not receive state aid.
Alibayli’s visit to the center was just the latest of many RFE/RL reports and feature stories on the lack of autism services in Azerbaijan and the trying situation in which the parents of autistic children find themselves. Though autism affects an estimated 4,000 people nationwide, the lack of treatment options forces most families to seek care abroad—a proposition that is beyond the financial means of many Azerbaijani parents.
“Parents go to Turkey or Iran to get a reliable autism diagnosis and treatment,” said Arifa Kazimova, a senior journalist with RFE/RL's Baku Bureau who has also reported on autism. “The prices there are high. A course lasting two or three days costs $300-400 dollars, and that’s an average monthly salary in Azerbaijan.”
Advocates for these families may be gaining some traction, however. Chichek told RFE/RL that she was contacted by government officials immediately following Kazimova's recent in-depth report on autism and the lack of state support for children and families struggling with the disorder.
"We thank RFE/RL for this coverage. After the article was posted, officials from the Ministries of Health and Education contacted us and asked about our problems,” said Chichek, adding that this is the first time a government ministry has reached out to her center expressing an interest in the work done there with autistic children.
Though the officials who contacted Chichek said financial assistance was dependent on the adaptation of a new government program and official recognition of autism as a disorder, Chichek said she believes the reaction of the ministries is a huge step forward for parents battling autism.
RFE/RL will continue to report on this often overlooked problem faced by so many families in Azerbaijan.