REACHOUT, UK: Autism Society, Gorlovka, Ukraine

From Despair to Hope

BLACK JULY: 'Murdered Anniversary' and Destroyed Lives

In July 1994 the first Autism Society in Ukraine ‘From Despair to Hope’ was formed in Gorlovka, Eastern Ukraine. I lived in this beautiful town for ten years and was going to come in July – to celebrate the 20th Anniversary of the Society. But now it’s impossible – nothing to celebrate as brothers are killing brothers, bombs are falling on the cities, towns, villages – destroying everything: buildings, blocks of flats, hospitals, schools, shops… Why, WHY? One death is many, but there, every day many people are being killed – children, women, old people. 

Thousands of people have managed to flee for safety to Russia where they have been provided with food and shelter, but many have to stay: either due to lack of opportunities to get to the border or some other personal circumstances. Many did not want to leave as it’s their homeland: they were born there, have worked and had relatives and friends. They found it hard to imagine that one day they would have to leave their home… 

It hurts even to look at what’s happened (and still happening) to Gorlovka – once a beautiful town – and now – http://life-learn.livejournal.com/660.html


http://life-learn.livejournal.com/ 

'From Despair to Hope'

Autism Society, Gorlovka, Ukraine



 

The State of the Problem of Autism in Ukraine

Although much progress has been made in research, services, understanding and recognition of autism in Western countries the problem of this disability in Ukraine still remains somewhat a virgin land. The experience of the psychiatrists in the field of diagnosis and treatment of autism leaves much to be desired. Probably, it is not their fault, or not only theirs. For many decades the totalitarian regime in the former USSR forced psychiatrists to be occupied with questions which were unrelated to medical treatment. Willy-nilly the lag behind the world level was created.

Although some Ukrainian high rank professionals claim their deep knowledge of autism, non-professionals (i.e. parents of autistic children) do not always agree with that. For example, some psychiatrists think that if a child is hyperactive, he cannot be autistic (Personal communication, 1996). Some other specialists consider autism to be synonymous to ‘childhood schizophrenia’ or ‘mental retardation’ and they insist that these children are imbeciles and, therefore, are uneducable. Very few psychiatrists in Kiev (the capital city of Ukraine) and some other large cities do diagnose autism, however, in other regions of the country the situation is very difficult for parents of autistic children as autism is not recognized, and consequently, not diagnosed there. For example, in Donetsk region, eastern Ukraine (population of about 5 mln people) there were no officially recognized children with autism until 1995 when one boy was diagnosed autistic (under the pressure of his mother). The pace of recognition of autistic spectrum disorders in this region is very slow. It is a very convenient position: no autism – no problems concerning it. What makes the situation even worse is that some Ukrainian specialists insist on isolation of "hopeless" children in special institutions for mentally retarded without any training. If the parents refuse the educational authorities "forget" about these children and deny their right to education. Thus, in Ukraine autistic children are not allowed to attend any kindergarten or school, they are kept at home without any professional support.

One should explain the situation in Ukraine regarding children with special needs in general. These children are assessed by a panel of "experts" (often for 5-10 minutes each). The children are told to do some tasks. If the child does not finish the tasks or does not cooperate, he receives the diagnosis of mental retardation and is offered a place in an institution. If the parents – whose wishes are not taken into account – refuse, the child is forgotten by education authorities and the parents do not receive any professional help.

The process of assessment itself is very humiliating for the parents and stressful for the child. Our "specialists" – members of the assessment panel -- do not take into the account the most elementary thing: A child has spent the first 6-8 years of his life at home, within 4 walls, surrounded by 2-3 very close people, and all of a sudden, this child is placed into an unfamiliar room with 5-6 unknown to him men and women who ask him questions. The parents feel uneasy, to say nothing of the child, especially an autistic child. To tell the truth, our specialists did not recognize autism in 1995 as seen from the official letter signed by the head of Donetsk Region Education Department: "The lack of children with autism was testified by the session of the psychological-medical-educational panel. Of the 6 children examined, only one child, Bogdashin Alexey, was given the diagnosis, together with the main disease (?), of autism syndrome. The diagnosis of autism was not confirmed in the rest of the children" (1995).

Two examples to illustrate the work of this psychological-medical-educational consultation:

  • A 6-year-old boy who could already read (though his speech was very limited) was offered by one of the "experts"…to assemble a pyramid, the task he could do without any problem when he was two years old. Naturally, the boy did not pay any attention to her, clung to his mother. The "experts" exchanged significant glances. So, what was their conclusion? Well, nobody was going to tell you that. To write their conclusion, to put their signatures under the diagnosis (by the way, the parents are not told the diagnosis given to their child) – not in their lives!
  • The mother of another 6-year-old non-verbal boy asked the ‘consultants’ to appoint a speech pathologist to work with her son and help him to develop some communicative skills. The answer was: "Why do you think that a speech pathologist should work with him? He doesn’t talk. How can we teach him to communicate? Come to us when he starts talking, then we’ll work with him. (We understand it as: Let him learn how to swim and we’ll pour water in the swimming-pool.)

These situations took place in 1995 in Gorlovka, Donetsk region, but they were (are?) very common for Ukraine. And this happens not because the existing legislation regarding disabled children is too bad (though none of the laws concerning handicapped children includes the category of "autistic children"), but rather it is possible for the authorities not to fulfill their duties enumerated in the legal documents. Thus, the full procedure of the sessions of psychological-medical-educational consultation is described in the Legislation Acts of the Ukrainian Ministry of Education according to which parents have the right to know the diagnosis of their child and to expect the appropriate professional support from the state. However, this procedure is only on paper and is not fulfilled in reality. Moreover, the main law of the country – the Constitution of Ukraine – guarantees for every child the right to education, but again, it is merely declarative, and thousands of Ukrainian children with disabilities are kept at home because their parents cannot persuade the educational authorities to allow them to be educated.

Unfortunately, the social, psychological and medical support for autistic children in Ukraine lags 3-4 decades behind clinical support in the Western countries. Many officials to whom parents appeal for help either have no idea about autism or regard children with autism as mentally retarded. As a result, the parents lose any hope, they are driven to despair in their vain attempts to solve the problem themselves; and the children, in the end, are lost to the society through the fault of the society itself.

(Olga Bogdashina, 1999)

Updated (2012) - http://autismdigest.com/autism-around-the-world-ukraine/ 


From My Diary:

Since May 1994 my daughter has been accepted to the kindergarten, but I still can not find any provision for my 5-and-a-half-year-old son. Where do children like Alyosha go? Only now I realise that I have hardly met any person (a child or an adult) with any kind of disability. Where are they? Before my son’s diagnosis, I have never thought about it, but now I want to know what the future is for my kid. I have to do my homework. Soon, the picture becomes more or less clear – there are three special provisions for children with disabilities in Gorlovka:

  • kindergarten No 11 for ‘mentally retarded children’,
  • a school for children with language difficulties,
  • a residential school for children with heart and lung diseases.

Children who ‘graduate from’ kindergarten No 11 are ‘transferred’ to special residential institutions for mentally retarded children outside Gorlovka. These institutions are of two types – those with some training (in self-help skills) and (for ‘severely mentally retarded children – imbeciles and idiots’) – without any training or education.

As a placement in a kindergarten for ‘normal’ children is out of the question for Alyosha, I try kindergarten No 11. He is accepted… and expelled in four days – ‘Your son is very aggressive towards our staff and other children. He wouldn’t quietly sit and watch a video. He lacks discipline. In the playground he just runs in circles pushing whatever and whoever is on his way. As he is a danger to other children you’ll have to keep him at home or place him into the institution.’

Back to square one. What do I do now?

June 1994

We’ve just come from our usual walk around the park, but this time it ended in a disaster. Alyosha and myself were walking along our path. As usual, I did all the talking. Alyosha didn’t respond to my eloquent descriptions of every single thing we were passing and didn’t try to ‘contribute’ to the conversation. But I was sure he was listening. So I was in the middle of my monologue about the trees, birds and cats when we met our psychiatrist. Lubov Andreevna was not in a hurry and stopped to ask me about my plans for Alyosha. I had no time to respond as my son pushed her hard and threw himself on the ground, screaming. Lubov Andreevna quickly retreated and I burst into tears. Hard as I tried to hide Alyosha’s behaviours from the ‘officials’ it rarely worked. This time it was my fault again. Alyosha couldn’t tolerate any change in our usual route and was not able to stop without having been warned. I didn’t notice the psychiatrist till the last minute when it was too late to prepare my son (Something like, ‘Oh, it’s Lubov Andreevna. Mummy will talk to her and Alyosha will wait, won’t you, sweetheart?’ usually was enough to avoid a tantrum.) Now it was too late and Lubov Andreevna (who could not understand my insistence on keeping Alyosha at home) is likely to agree with others that my son was ‘unmanageable’ and a ‘danger’ to other children.

I have to find other families with the same problem. Surely, I am not alone. I can not be the only mother with an autistic son. But where and how can I find them? ‘In the beginning there was the word…’ That’s what I need! Shall I write into a local newspaper? Should it be an advertisement about the foundation of the Autism Society? Oh, no. If even specialists have no idea what the word ‘autism’ means, how can the parents know they have an autistic child? I recognised my son in the descriptions of autistic children I read about, so I have to describe my son for other parents to recognise their children in him. How shall I start?

Between Despair and Hope

Till recently autism has not been diagnosed. Autistic children were regarded either as mentally retarded or as schizophrenics. But they are neither these nor those… Their main ‘defect’ (and, consequently the main criteria to diagnose them as autistics) is their social impairments: they live in their own special world, they don’t relate to people in the ordinary way; often, but not necessarily, lack speech. Yes, they are difficult children, it’s hard to understand them, and they often throw tantrums for no discernible reason. However, nobody here has tried to understand them, to enter their world and then to help them come to ours. However, it is possible!

Did you spend the first years of your child’s life between hope and despair? On the one hand, you saw your child developing (he started talking, began to walk at the right age, etc.). On the other hand, you cannot get rid of the feeling that your wonderful, beloved son (daughter) differs considerably from their peers; and soon doctors diagnose your child (without any further explanation!) as hopeless. Your first reaction is shock. Your brain refuses to perceive the reality. After that you can be paralysed by another emotion – helplessness. You feel helpless because you know absolutely nothing about your child’s problems. In despair you rush to specialists but every new fact you find out only increases your confusion. Helplessness is followed by guilt (are we responsible for it?) The guilt grows into anger (why our child?) When you, at last, manage your emotions, you begin to realise that something is to be done (but what?), you have to help your child (but how?).

Mothers and fathers of children with autism, nobody will help our children except we ourselves. Nobody knows their difficulties and needs better than we do. Children with autism cannot explain what they want and need, and people who do not deal with them every day, will never understand either their problems or the problems of their families. Who will protect them but we? Don’t stay alone with your despair. You are not the only family with such a child. And one should not invent a wheel. The Autism Societies supporting autistic children and their families have been founded all over the world. Why not adopt their experience, research findings and methods? So far your main problem has been lack of information. We can give it to you.

If you are a parent of a child with autism, and you want to learn more about this condition, if you are still holding your hopes and beliefs in you child and wish to help him, we will wait for you on any Thursday from 12 to 13. Address.

In half an hour the article ‘Between Despair and Hope’ is ready and posted to one of our local newspapers. Now the only thing I can do is to wait.

The article is published on Wednesday and the next day a mother and her 9-year-old girl Vita enter my office with a newspaper in her hand. It is the first time I meet another autistic child. I have not had time to introduce myself as Vita interrupts our polite exchange of greetings with a chain of questions about me, my birthday, my children, my address… and as I can not keep up my answers with her new questions, I change the topic by asking the girl what she likes to do. Immediately, Vita tells me off for interrupting her (‘It’s not nice to interrupt if someone is talking to you. You have to learn to wait for your turn.’) I have to acknowledge that she is absolutely right. Vita giggles and starts reciting Pushkin’s poetry.

Olga (her mother and my would-be friend) is trying to hide her tears while she is describing all the ordeals she has gone through: ‘The humiliation, you know… They said she was an imbecile… Unteachable… Hopeless… Told me to get rid of her and to try for another baby…’

(Oh, yes, I know. I have been there.)

During the week after the article has been published 12 families contact me. All the stories are similar. Soon their children (Vita, Pavlik, Sasha and others) will be my first pupils. Now I am not alone. Together we can do quite a lot.

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