Object : Issues of Autism in Lithuania Author: EDUPRO NERINGA LAŠIENĖ - PDF

Object : Issues of Autism in Lithuania Author: EDUPRO NERINGA LAŠIENĖ There are more and more of them. And not only in our country. In the USA, Great Britain and Australia people already speak about the

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Object : Issues of Autism in Lithuania Author: EDUPRO NERINGA LAŠIENĖ There are more and more of them. And not only in our country. In the USA, Great Britain and Australia people already speak about the epidemic says Regina Ivoškuvienė, Assoc. Prof. from Šiauliai University. This mysterious development disorder appears as if from nowhere. Beautiful, healthy children looking at the world with intelligent eyes at some point due to the reasons which cannot be explained isolate from the environment, stop communicating, their language and adaptation into society skills weaken, no longer want to socialize, become anxious, aggressive towards the others and themselves. They stand as if behind the wall where there s no door, windows into the normal world. It takes lots of efforts to break this wall. Wrong question? Reasons? There are a lot of theories. For quite some time it was believed that children protest against their parents who leave them and rush to works, others claimed that autism as though develops when children are vaccinated from certain diseases or when they are strongly frightened. It was observed that there was a greater number of autists where the area was polluted with heavy metals, especially mercury. Also there were published several articles which tried to prove that autism is caused by the TV and computer. Or maybe, as Assoc. Prof. Dainius Pūras, the director of Children s Development Centre, puts it out, the life itself is becoming autistic. We cannot imagine our life without technologies. Telephones, internet, science and work everything may be conducted from distance Now it is acknowledged that autism is not a psychological but biological problem. A child is born with certain brain changes and that is a development disorder, state, not a disease. Disease may be cured or you may die from it, - says Assoc. Prof. D. Pūras. But that s not the case. The question whether the children having ASD may be cured is wrong. The child is not ill. He / she simply is just like that and he will have to live with this disorder. Parents shouldn t be given empty hopes that this disorder is curable. The so popular dolphin therapy is pleasurable, maybe even makes the communication between the child and his / her parents a little bit easier, but the hope that dolphins will cure autism is empty. Parents cannot expect a miracle the doctor says. It is also necessary to know that it s possible to make children s adaption in normal life easier and improve their being, but huge parents, specialists efforts as well as quite a big sum of money are necessary. A genius or a retarded? Specialists acknowledge that the best results are achieved working with children having ASD when it is diagnosed at an early stage up to three years. The first signs may be observed children do not look into eyes, do not go to parents, do not smile, do not like to be touched, they are irritated by certain sounds or lights, they repeat stereotypical actions, for example, sway, flap or constantly walk in circles, they even lose skills (for example, speaking) which they had acquired earlier. Autistic children are unable or have a poor ability of initiating and sustaining social relations due to certain biological reasons says Assoc. Prof. D. Pūras. However, according to him, when diagnosing autism some terminology traps appear and parents do not know what happened and what to do. The disorder is described, its severe form severe disability. There are also children who have a light form of autism the so called Asperger s syndrome: a talented child who may become an artist, scientist but there is one peculiarity for this child it s more difficult to communicate, adapt, sometimes he / she behaves strangely, at school he is treated tough, rough or a hooligan. Doctors face a certain dilemma which is mostly related to illiteracy of the society, primitive attitude towards people with disorders the so called stigma. For example, we diagnose mild autism or Asperger s syndrome, - says Assoc. Prof. D. Pūras. Then we have a conversation with parents and ask them what they want to emphasise diagnosis and get benefits and financial support or to foster his / her talents. Developing child s talents he / she may become new Einstein or Nuton who now are believed to have had autism as well. He / she may be simply rejected. Of course, they may be integrated into general educations schools, however, as Assoc. Prof. points out, if parents would like to include a child with a complex disability into general education school, they most probably would be politely asked to choose another school. Assoc. Prof. R. Ivoškuvienė agrees with the director of Children s Development Centre: Children with Asperger s syndrome may have high intelligence and if it is diagnosed in time they may successfully adapt in life if they get appropriate support. But they need individual attention. These children tend to be aggressive and self-aggressive, about 30-40% try to hurt themselves. If the environment isn t supportive, if they do not understand what is being told them, if they do not know how to plan activities, their anxiety turns into aggression, for instance, they may hit their head on the table. Then others understand that it is difficult for them. Autistic people are extremely anxious. Unfortunately, about 80% of autistic people tend to have intellectual disability, says Assoc. Prof. How to help children and parents? According to Assoc. Prof. R. Ivoškuvienė, autistic children understand and accept, interpret information, signals from the environment differently than the others. They process information differently, therefore, we have to find a way how to convey information so that he / she could receive / accept it. Continuous structured education is of great importance as well as schedules to which the child sticks. 2 Child has to obey to certain rules. Virginija Juškevičiūtė is one of the specialists who has been working with autistic children in Great Britain for several years. In a special school which is financed by parents we have 16 children and 24 staff members. It is impossible in other way, - says Virginija, - at least one pedagogue has to work with one child because they are all very different and individual approach is necessary to each of them. We have to find ways to understand how these children think, feel, whether they are able to learn. Sometimes they understand us but cannot reply or understand but communicate in a way which is difficult for us to understand. A lot of autistic people can speak but do not know how to choose necessary words, - says Prof. Beneth Leventhal, world famous autism researcher and expert. Parents you have to demand! In Lithuania, according to Assoc. Prof. Pūras, the problem of autism is like a half empty glass. When our colleagues from Western Europe ask us if anything has changed here we say that compared to the Soviet times then there s progress. But actions started and stopped. First steps have been done Children s Development Centre was established. The child is studied, then given a programme what parents should do with their child and when they return home they have to get full support in their district. But, unfortunately, they do not get that support. After a month they come back to us. The centre is not big. It s more and more difficult to get a place here. You have to wait for almost a year. Time passes. But the purpose of the Development Centre is not to provide a constant support. There should be centres in every district because there are a lot of different similar conditions, for example, hyperactivity as a lot of children also suffer from it. When autism is diagnosed a constant work is necessary not less than 25 hours per week. Autism is thought to be the most expensive form of disability comparing to visual, hearing or even intellectual disabilities. Taking, for example, children having Down s syndrome they are emotional, affectionate, it is easy to come closer to him / her, their intelligence is poor but they are able to mimic / copy / imitate. In case of autism everything is vice versa it takes a lot of time to have at least a tiny contact. Specialists who were prepared in earlier decades do not work with these children because these children are not able to stick to instructions and do not speak. These specialists would say when he / she starts to speak then bring him /her to me. From the modern perspective it is the specialist to blame because he is not able to help autistic children start speaking because the specialist does not how to find a contact with him The work with autistic children is a creative process. But money is necessary for this work. But in our country from the Soviet union times the priority is given to the classical medicine the treatment of internal organs, surgery, etc. But this sphere should not be left aside. It is believed that when other spheres will be sorted out only then the attention will be given to development disorders It is the 3 problem of civil society. Only those who really care (parents) can do something. They have to demand from the government so that their children could get constant help. Now the situation is that even wealthy parents who agree to pay money in order to help their children to adapt in life cannot get help in Lithuania. There are a lot of centres abroad which maybe do not create a miracle but children are taught necessary skills, - says Assoc. Prof. Pūras. Where do they disappear when they grow up? According to the doctor, one more important aspect children with development disorders are not only the concern of medicine. It is an intersectoral problem. All systems have to work in sync health, education and social care. It is very convenient for ministries to say that the problem is not theirs. Those responsible for health protection say that development disorders are not only a medical problem because special education is the field of education In the Western countries these problems are equally solved by health, education and social systems. At an early stage early intervention through paediatrics, later they attend education institutions while doctors help to solve other problems behavioural problems, convulsions which are the problem to ¼ of all autistic children. When autistic children grow up they have to become more independent because their parents grow old. Every day they have to go to their work, for example, in a day centre. This is already a concern of the social sphere. This is the standard of the Western world. Children-teenagers psychiatrists take care of children until 18 years old. When they turn 18 they are treated by psychiatrists of adults. When reviewing medical records one may observe that there are almost no grownups with ASD diagnosis. Where do they go? For grownups autistic people are strange psychiatrists according to the old habit diagnose schizophrenia Autism is a disorder which starts in childhood and continues during the whole life and it is definitely not schizophrenia! It is necessary to create a system which would satisfy the needs of these people when they are children, of school age and when they grow up. When parents are alive they take care of them but when they die people with a more severe form of autism most probably are taken to some psychoneurological medical centre. Centres of development disorders all over Lithuania It is necessary to speak about this problem. Special programmes have to be initiated because ASD does not belong to the general spectrum of psychiatric health problems and the models of psychiatric helath centres are not suitable for solving the problem of autism. It is necessary to create the centres of development disorders in different parts of Lithuania. Assoc. Prof. R. Ivoškuvienė also claims that centres of development disorders are really necessary in districts for both early diagnostics and 4 observation, development. Centres in districts would be the best solution because autistic children have the problem when they change environment they lose their skills. So when transferred to a different environment they have to be taught everything from the beginning. The most important thing is not to make children move from one institution to another because they need a steady environment which could be changed little by little. The child experiences a huge trauma when he / she has to move from one place to another. If children would receive a constant care in such centres where they would stay until adulthood they would reach a lot and it would easier for them to integrate into society. Now everything is scattered. For instance, in Children s Development Centre children stay up to 18 days. They are examined, get diagnosis, recommendations are given for them. It is not easy to stick to these recommendations. Every case is different. A concrete programme may be suggested only after observing the child for some time. The main problem what do these children do when they grow up? Where do they use their skills? For example, in Scandinavia there are special programmes when employers hire autistic people to work what they are able to. For instance, to tear newspapers, clean windows, perform certain actions with numbers, etc. Autistic people are really thorough. Contracts are signed, they are paid, successfully do their work which may be pleasant for them and are able to sustain themselves. It is time to take concrete steps in order to help children having development disorders. They are also our citizens. It will definitively pay off in the future. The article in the Lithuanian language may be found on 14-neringa-lasiene-autizmas-sienos-be-ribu/2748 5
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