On our trip in 2010, we met with one particular couple in Odessa, Ukraine who yearned for so many answers about their nine-year-old daughter. As they began their story, they immediately dissolved into tears and shame. They had not allowed their daughter to leave the house since they discovered she was ‘different’. Personal and societal shame and humiliation hovered in the room like a thick smog, emotionally, painfully unbearable for all of us.
Questions began to arise in my mind of the state of care for these families and children. If the global statistic is 1 in 100 diagnosed on the Autism spectrum, where are these children in Ukraine?
In 2011, I began a project entitled, “Not Forgotten: The Untold Story of Autism in Ukraine,” a documentary on the state of Autism in Ukraine. I interviewed 20 families across Ukraine, telling the story from the parents’ point of view. In 2013, the documentary was premiered in the Midwest and Southeast. You can see it here: https://vimeo.com/64762953. Password: UkraineNF.
The purpose of this project is to bring Autism in Eastern Europe into the open and eventually to have key text books and training material translated into Ukrainian and Russian. Our first publication in Russian is HANS Physician Handbook. We give our very heartfelt “thank you” to Linda Lee and HANS for permission to print the handbook and also thanks to Dr. Jim Peipon, Ukraine Medical Outreach, for the Russian translation. 10,000 copies will be distributed throughout Ukraine to doctors, psychologists and psychiatrists by the end of 2013.
In November, 2013, I will take a team of U.S. parents, doctors, and a specialist to speak at the Annual Conference for Psychologists and Psychiatrists of Ukraine. This is a great honor and a greater opportunity to continue to bring the great progress we experience in the West concerning Autism into Eastern Europe, especially in Ukraine.
Raising awareness of this heartrending problem and offering some practical solutions enables those without hope or future to envision life afresh.
W. Thomas Saxon