The Challenges of Educating Ukrainian Children with Autism

I have a tireless and dedicated colleague who leads the only kindergarten for children with autism in the entire territory of the former USSR.  It is located in Kyiv and serves children ages 2 to 7.  In Ukraine, the situation for children, youth and adults with Autism Spectrum Disorders (ASD) is profoundly severe.  Intervention and educational programs for these children and youth are nearly non-existent throughout the various and far-flung republics of the former Soviet Union.  To make matters worse, as soon as a young Ukrainian with autism turns 18, he or she is automatically classified as having schizophrenia and is placed on psychotropic medications, which is entirely inappropriate and ineffective.  In Ukraine, autism is viewed as a mental illness and falls under the jurisdiction of the Ministry of Health, which is counterproductive, because autism is not a mental illness, but rather a developmental disability.  Medications may be used to treat severe symptoms in some individuals, but the most effective treatment is early intervention therapy from birth to age three. Indeed, therapy and behavioral interventions are the predominant and most effective ways of improving children’s development.   Additionally, children with ASD also benefit from educational interventions. 

The situation here is absolutely dire.  In Ukraine, children with ASD frequently are never properly identified or identified very late, which means the critical window of early childhood intervention is missed.  Obviously, early screening by trained pediatricians followed by a thorough evaluation is absolutely critical.  Tragically, most Ukrainian children with ASD never receive appropriate therapeutic and educational services.  Other than Ina Markovitch’s, school, which has a waiting list, parents have few options and nowhere to turn for help. The general attitude in society is to totally reject and ignore individuals with autism, and as a result parents of children with Autism Spectrum Disorders live in absolute shame.  Their children remain at home, hidden away by families too afraid or ashamed to take them out into public.  In Ukraine there is a profound stigma attached to having a child with a disability, any disability, but especially having a child with severe needs, particularly developmental disabilities such as ASD, cognitive disabilities or profound physical disabilities. 

I am a teacher of the deaf, so I have limited experience working with children with ASD, but because I am one of the few (or only?) American professors in special education in Ukraine, I am often asked to help address a wide range of difficult problems.   Currently, with the help of a medical colleague, I am trying to help Ina develop a program for teaching physicians how to screen young children for autism, so they can be properly evaluated (a another significant challenge here).  I would like to set up a conference where pediatricians and family practitioners receive some training on screening children for a range of disabilities.  A topic of significant importance to me professionally is Early Hearing Detection and Intervention (EDHI).  I would love to present a breakout session on this topic at the above mentioned medical conference, because early identification and intervention is crucial to effective language development of deaf and hard of hearing children.

The goal of the pediatrics conference would be the eventual widespread establishment of special education screening and evaluation programs, which would lead to effective early intervention and education for children with autism and other disabilities.   Secondly, I would like to see the development of higher education programs for training special education teachers.  Currently, Ukrainian teachers of children with disabilities receive no training.  The few individuals who do choose to work with children with special needs must learn as they go.  I also want oversight of Autism Spectrum Disorders moved from the Ministry of Health to the Ministry of Education.  That would have profound implications on how programs for children with ASD are viewed and managed.