Posted by Amy Daniels, Autism Speaks assistant director for public health research
I’m pleased to report on exciting progress being made by the autism community in Bulgaria. The purpose of my visit – on the heels of last week’s triennial Autism-Europe conference – was to learn how Autism Speaks could continue to help our families there. As many of you know, Autism Speaks helped establish the Southeast Europe Autism Network in 2010. Bulgaria joined SEAN last year.
My trip started on a high note. Just days before my arrival, Bulgaria’s Ministry of Health adopted its first “National Plan for Autism.” Thanks to the activism of the Bulgarian autism community, the plan incorporates many activities adopted from SEAN and Autism Speaks’ Global Autism Public Health initiative (GAPH). These include programs for raising autism awareness, training autism professionals and generally building the nation’s capacity to deliver autism-related services. Autism Speaks will work with the Bulgarian autism community and its health ministry to provide technical assistance in these areas.
Krasimira Kostadinova, Bulgaria’s SEAN coordinator, was my gracious host during the brief visit. Dr. Kostadinova, of Bulgaria’s National Center for Public Health and Statistics, co-authored the country’s new National Plan for Autism. Her center will play a central role in implementing its activities. In particular, they will be improving programs for autism screening, diagnosis and treatment. This will require collaboration between many government agencies including health, education and social welfare, as well as international collaboration with organizations including Autism Speaks. Most importantly, families will play a central role as the activities of the national plan are rolled out.
“Families are very important to the entire process,” Dr. Kostadinova stressed. Throughout my visit, I saw firsthand just how important a role families play in improving the lives of individuals with autism in Bulgaria.
On the first day of my visit, Dr. Kostadinova introduced me to a lively group of parents who had formed an organization whose name translates as “Help for People with Developmental Challenges.” The group brings together seven distinct parent organizations united around the goals of improving their children’s lives and fostering autism-acceptance across Bulgaria.
They told me about their struggle raising children in a society where autism does not fit the standard concept of “disability.” They continue to battle with teachers and school administrators just to keep their children in school. Some are close to desperation over the lack of autism-specific services in their country. It was tough to hear. At one point in our conversation, I found myself thinking, “How do these parents find the strength to keep going?”
The tone changed to one of celebration as the parents began describing all they had achieved over the last five years. Their organization has hosted many training programs for parents and caregivers. One of the member groups started Bulgaria’s first autism center, in the capital city of Sofia. One parent developed a preschool program that integrates children with autism with typically developing youngsters.
They also proudly described their participation in World Autism Awareness Day and Autism Speaks’ Light It Up Blue campaign.
In 2013, as part of their awareness-building, they published a book titled I Know Someone with Autism. It features personal stories about individuals on the spectrum from the perspective of the friends, family members and educators who known and love them.
Dr. Kostadinova described how she’d been using this book to raise awareness among healthcare providers who had no idea how to even recognize someone with autism. After reading the book they had thanked her for helping them understand the unique challenges and strengths of individuals on the spectrum. I was touched when they presented me with my own copy at the end of our meeting.
With Dr. Kostadinova as my guide, my trip continued with visits to public and private centers for children with autism, Bulgaria’s pediatric psychiatric clinic and the first school to integrate children with disabilities into mainstream classrooms.
There’s no question that life in Bulgaria is particularly challenging for individuals with disabilities. The struggle is particularly keen, I think, for those with autism, given that the disability was barely recognized here until recent years.
Bulgaria’s autism community continues to face difficult challenges – from keeping their children in school to ensuring that their children don’t lose what services they have when they become adults. (In Bulgaria, the diagnosis of autism is restricted to children and replaced with “schizophrenia” at 18.)
Given the tremendous progress they’ve made, I have no doubt that Bulgaria’s resourceful autism families will continue to work with their government to surmount these great challenges. Bulgaria is the poorest country in the European Union. As such, its families and government have far fewer resources than we enjoy in the United States. I came away from my visit humbled and deeply respectful of the role that parent passion plays in finding solutions to autism’s greatest challenges.