X
!

View your subscription or single issue on our free app for Apple iOS or Android.

Autism Around the World: Ukraine

Home  /  Featured Articles  /  Current Page

by Olga Bogdashina, PhD
Autism Asperger’s Digest
| July/August 2012

Yesterday
Just a couple of decades ago, autism did not exist in Ukraine according to several psychiatrists (Feinstein 2010). In the 1990s these professionals announced that there were no children with autism spectrum disorder (ASD) in the regions they were responsible for. Their opinion was that the mothers who had suggested that their children had ASD were “delusional.”
Segregation used to be a normal phenomenon in Ukraine. Only able-bodied and mentally able persons had the right to live in mainstream society—any deviation from the norm and the person was hidden in an institution, isolated from so-called normal people. It was only when my son was diagnosed as “hopeless and uneducable,” and I was offered a place for him in an institution for severely disabled children, that I realized I had never seen anyone who was “different” in Ukraine. I rejected the offer immediately, thus becoming the officials’ enemy—“If you don’t want to follow our advice, take your child and go away.”
Later I discovered my two-year-old boy was diagnosed as schizophrenic with severe mental retardation: no education recommended. And he was not the only one—there were hundreds, possibly thousands, of “unteachable” children in Ukraine. Education authorities did not want to do anything with these children; they were not allowed to attend school (not even schools for intellectually disabled children because their behavioral problems were determined to be “dangerous for other children and teachers”).
Speech language pathologists were not interested: “It’s impossible to work with children like these. How do you expect me to teach them to talk if they refuse to look at me and follow my instructions?” Social services did a lot of talking about the huge amount of work they did with disabled children, reflected in the distribution of humanitarian aid once a year (for Christmas). Work with the children? Teach them skills? Provide support? “You must be joking! Your children are soooo noisy; they can’t sit quietly and listen!”

Today
In Ukraine children with special needs are assessed by a panel of experts (often for less than 10 minutes each). If the child does not finish the given tasks or cooperate, he receives the diagnosis of mental retardation and is offered a place in an institution.
If the parents refuse, the child does not receive any profes-
sional help.
The process of assessment is humiliating for the parents and stressful for the child. The members of the assessment panel do not take into account that the child has spent his first six years of life at home, and all of a sudden this same child is placed in an unfamiliar room with five unknown persons who ask him questions.
Since the mid-90s when the first Autism Society in Ukraine (“From Despair to Hope”) was created and the first parent-funded school for children with ASD was founded, some things have changed for the better (e.g., psychiatrists are not ignorant enough to claim that there is no autism in Ukraine, parents are told the diagnosis of their child). However, some things haven’t changed. There is no single state educational or social rehabilitation program. After their child is diagnosed with ASD, the parents are advised to teach their child themselves at home, or hire their own teachers.
Autism awareness in Ukraine follows a trajectory similar to that of countries in the West, but with different curves on the way, shaped by differences in cultural attitudes. Even now autism is classified as an illness in Ukraine.
In Ukraine, as in many other countries, it was the parents of children on the spectrum who started the movement for recognition of their children’s special needs. However, due to economic problems, the parents could not buy property to start their own schools, so they had to rent rooms or buildings and pay specialists to work with the children, thus making these schools unaffordable for many parents. The only free school for children with ASD is our school “From Despair to Hope” in Gorlovka. It is free because it is funded by the charity, REACHOUT (Reaching Out to Children with Autism in Ukraine) in the UK.
So far the Ukrainian media states that there are 1,500 children with ASD, according to the TV news program Podrobnosti (2010), in Ukraine, which has a population of about 43 million. This figure can be laughable for those in the West, but if you consider that there were no children officially diagnosed with ASD in the 1990s, we can be relatively optimistic.

Tomorrow
There is a lot of talk about inclusive education for children with ASD in Ukraine, but this is just talk. It is unrealistic to expect that this type of education will be offered in the foreseeable future.

There are several reasons for this pessimism:

  • inadequate awareness of ASD—not only among the public, but also in education, social services, and psychiatric and psychological institutions
  • the most common treatment for ASD is still medication for schizophrenia, and often hospitalization in psychiatric hospitals
  • schools are not ready to accept students who are “different”
  • shortage of knowledgeable autism specialists
  • lack of united efforts: parents in different regions of Ukraine do not know about one another due to lack of technology

Despite these stumbling blocks, the movement for the rights of our children with ASD has started in earnest. Though sometimes the parents have been thrown back from hope to despair, again and again they arise stronger, and unite their efforts with open-minded specialists. Together they will move forward—from despair to hope—and eventually create a brighter future for their children with ASD in Ukraine, where all can develop their potential and be welcomed in society.

Dr. Olga Bogdashina is an autism consultant, trainer, and visiting lecturer in autism studies. She is the author of Sensory Perceptual Issues in Autism and AS; Communication Issues with Autism; Theory of Mind and the Triad of Perspectives on Autism; and Autism and the Edges of the Known World.

References
Feinstein, A. 2010. A History of Autism: Conversations with the Pioneers. London: Wiley-Blackwell.

Podrobnosti, “Details,” National TV, April 5, 2010.

 

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.


Post Tags:



Comments

  1. Dear Sue
    Thank you for your comment. I know about this approach (and I’ve got the book you’ve mentioned). (A couple of months ago I wrote an article for a Swiss Journal on this nutrition and autism. Some children do benefit from this, while others need a different treatment.
    We start from identifying sensory perceptual differences of each child and work from there.
    You can see our approach here – http://www.freewebs.com/autismukraine/autismarticle1.htm

    Thanks again
    Olga

  2. Dr. Bogdashina – There is hope. You may want to read this book – Nutrient Power: Heal Your Biochemistry and Heal Your Brain (Skyhorse Publishing, 2012). The book is authored by William Walsh, PhD, an international expert in nutritional medicine. He presents a science-based nutrient therapy system that can help people diagnosed with mental disorders. The book describes individualized nutrient therapies tailored to biochemical imbalances affecting individuals with ADHD, autism, behavior disorders, depression, schizophrenia and Alzheimer’s disease. It includes case studies and in-depth chapters describing how the brain can be healed by identifying nutrient deficiencies and overloads, and how natural, drug-free therapies can effectively correct the imbalances. His charitable training and research organization – Walsh Research Institute – provides physician training, informational talks and symposiums all over the world. Website: http://www.walshinstitute.org.

Sponsors