I am! I need help!
Poland is a country where people tend to hide many affairs. They seem to think that if the problem is not visible it does not exist. For example, this applies to the sick. The contemporary world lacks education and money but it also seems to lack imagination of mercy about which the Holy Father John Paul II spoke many a time.
Autism is often associated with people who have innocent, silent faces, their eyes are fixed on one distant point, and they behave in a strange way, which others cannot understand. These odd movements are not only waving about, turning things around, making strange sounds but also a mysterious map of various ways of communication, which I have seen during therapeutic exercises: shouting, squealing, tears changing into violent laughter, clapping hands and kicking things, including kicking oneself, biting, spitting, outbursts of uncontrolled joy... I understood that these children could have very deep disorders; they are so defenceless and need so much help.
Autism is a kind of developmental disorder and it is usually revealed in the first three years of life. The fundamental features are radical avoidance of contacts with people, the need to maintain unchanged environment and a serious speech disorder.
Autistic children do not feel safe in the reality that surrounds them. They are characterised by lack of social intuition and extreme naivety. 'It is hard for them to image what people feel, what their intentions are; they did not understand what other people do and what they want to communicate by their activities', says Jolanta Gesiarz, educator in the Public Psychological-Pedagogical Centre No. Three in Czestochowa. 'Strong fear makes their reactions violent like a storm. Falling into aggression and self-aggression makes them feel relieved. A child hits since it is helpless. Additionally, the disordered senses make the life of the autistic people difficult. Some children are so sensitive that they cannot stand other people's touch; other children must be held so strongly so that they could feel anything. The same applies to smell, taste and sight. Delicate and fragile nervous system causes strong fears when some daily activity is changed or when some element of environment is changed', adds the educator.
I saw it myself when I was watching the pupils at the Special Needs School No. 23 in Czestochowa.
Kasia was not an innocent angel with a 'stone' face. She was aggressive, showed signs of self-aggression and deep disorder. Her therapy began when she was 11. Earlier she attended nursery school for a very short time but because of her strong aggression she left it. She tore off curtains, destroys chairs, and broke glasses at home. She also pulled others' hair, bit, scraped, hit her head on the floor and she was posed a threat to her younger brothers and sisters. In 2003 Kasia started the Special Needs School in Czestochowa and received help at the Educational Centre run by the Congregation of the Sisters of St Joseph in Czestochowa. The school organised afternoon therapy classes.
Today Kasia is not the same child she used to be. She can dress herself, can wash herself and comb her hair as well as lace her shoes, button up and zip. She does not need assistance in the bathroom. She can eat herself and wash up. She is cheerful, she often smiles, hugs others. She likes when someone spends time with her. She utters single words like 'mummy', 'daddy', 'give', knowing what they mean. Perhaps in the future she will be able to connect these words in phrases 'mummy, please give me', 'daddy, give me'. These will be the most wonderful words for the teacher and her parents.
At first some parents do not notice strange conduct and alarming signals of some developmental disorder since autistic children's appearance does not differ from the appearance of their peers. However, some parents feel that their children do not want to hug or be touched. They wonder why their children behave like that as if they cannot hear, feel pain, hunger or cold. Many parents cannot cope with their children's attacks of aggression, self-aggression as well as sleeping and eating difficulty.
When parents learn that their children suffer from autism they are horrified. They cannot accept the diagnosis, keep going from one specialist to another, receive contradictory information and seek alternative forms of treatment. Those who want to know more look at websites but unfortunately, the Internet gives numerous theories that have not been scientifically proven. Parents cannot help their children do homework and have problems with their upbringing. They instinctively try to meet their children's needs and requirements. They yield and give their children what they 'fight' for or what makes them calm. Yielding, parents actually strengthen the children's difficulties.
Being anxious about odd behaviour of their children parents should go to the nearest counselling centre as soon as possible. Early diagnosis and intensive therapy for autistic children can help them function and increase their chances to join peers' groups in regular schools.
Analysing parents' opinions one can see that first contact doctors (general practitioners) are not prepared to recognise the disease and support parents with autistic children. 'At various conferences and trainings we learn that the problem of early diagnosis is not only a problem of small towns but also of big cities', says Malgorzata Hadrys, director of the Special Needs School No. 23 in Czestochowa. 'If autism is suspected or there is risk of falling ill this suspicion should be excluded through special examination. We have girls who were diagnosed autistic at the age of six, but their behaviour clearly indicated autistic features earlier. In spite of alarmed parents' requests doctors did not send children to specialists, the doctors simply underestimated the problem', the director adds.
The most important thing is awareness and education of parents who have the right, which they should demand, to have their children examined by specialists, even in spite of the opinion of the first contact doctor.
Various organisational-financial problems make autistic children's life more difficult. The Special Needs School in Czestochowa has pupils with various disabilities, including autistic children and those that suffer from similar disorders. This is the only school in the region where two or three autistic children are taught in separate forms. Although this can seem to place them in some isolation these children need specific methods of teaching and conditions of learning. Thanks to the municipality, 'one to one' therapy is applied for the youngest autistic pupils. This means that a therapist can work with only one child. Such therapy gives autistic children a chance to catch up with their healthy peers. Unfortunately, such therapy is not available for all children.
'The first class of autistic pupils was created in the Special School in 1998', says Mrs Hadrys. 'We fulfilled the wish of the parents who realised that their children needed special care. Before this class was organised autistic children had gone to regular schools or stayed at home. Some were hidden', she adds.
Autistic children, like all children, can go to school till they are 21 (at the age of 18 they finish primary school and till 21 they finish gymnasium) and when they are over 21 they can attend high school. Unfortunately, there is no such a school in Czestochowa, so the sick can attend some revalidation-upbringing seminars. They can also take part in group therapy organised by the State Fund for Rehabilitation of the Disabled. Some pupils go to the Day Care Centre, to the centre run by the Municipal Social Care Centre. There is also a day care room for autistic children and young people (the only one in the city), founded and run by the Czestochowa Association for Helping People with Autistic Problems.
Bozena Kulik, President of Czestochowa Association for Helping People with Autistic Problems, claims that there are still parents who do not know that they should go to the District Disability Adjudication Panel. Thanks to such adjudication they can apply for a care benefit and many other forms of relief, defined in the Employment and Vocational Rehabilitation of the Disabled Act. 'It is paradoxical when a child's carer does not reach retirement age and the child is not obliged to go to school any longer. Then there is a gap, which is hard to fulfil', says Bozena Kulik. 'The Association tries to support parents and the sick but our activities are only temporary and we see more and more needs. We have no money.'
Although there are counselling centres, schools and associations many places lack centres to help autistic children and adults. The existing ones are crowded. Unfortunately, families are left on their own. Certainly, the situation looks better in big cities, in towns and villages parents need to solve such problems themselves. And they always need help...