CABAR.ASIA
Autistic Children.
Kyrgyzstan Lags Behind
Kyrgyzstan Lags Behind
Kyrgyzstan has no public treatment centres for autistic children. This is not the only issue. Parents complain about the shortage of qualified doctors, high cost of medications and discrimination from the society.
Families that have encountered the diagnosis "autism" face a series of battles and victories intermittently. First, they have a battle with themselves, acceptance and recognition of the diagnosis, and then they have a battle against the disease for every gesture, every smile, every child's look. Sometimes, these are little yet very important and global achievements. The autism spectrum disorders (ASD) is a whole group of various conditions. According to WHO, autistic people may have issues with communication and interaction with other people. They have peculiar difficulties with changing from one activity to another, concentration on details and unusual reactions to sensations.
According to WHO, a whole range of interventions from early childhood may contribute to the optimal development and improvement of the quality of life of autistic people. To do this, both patients and carers should have access to necessary information and support of specialists based on their individual needs.
According to WHO, a whole range of interventions from early childhood may contribute to the optimal development and improvement of the quality of life of autistic people. To do this, both patients and carers should have access to necessary information and support of specialists based on their individual needs.
Kyrgyzstan, according to the Republican Medical and Social Assessment Board, has nearly 630 autistic children as of 2021.
According to the law "On state benefits in the Kyrgyz Republic", autistic children in Kyrgyzstan are entitled to monthly benefits. According to the president's decree, the benefit amounts to 6 thousand som (70.75 dollars) from October 2021, and will be 8 thousand som (94.33 dollars) from January 1, 2022. Moreover, a new kind of social service "Personal Assistant" was introduced in 2018 to support parents with children with disabilities. It provides for monthly payment of 4,900 som (57.79 dollars).
According to the law "On state benefits in the Kyrgyz Republic", autistic children in Kyrgyzstan are entitled to monthly benefits. According to the president's decree, the benefit amounts to 6 thousand som (70.75 dollars) from October 2021, and will be 8 thousand som (94.33 dollars) from January 1, 2022. Moreover, a new kind of social service "Personal Assistant" was introduced in 2018 to support parents with children with disabilities. It provides for monthly payment of 4,900 som (57.79 dollars).
There are a few options of autism spectrum disorders. According to the International Classification of Diseases, there are four types: child's autism, atypical autism, Rett syndrome, and Asperger syndrome.
All these terms describe various manifestations of the same disorder. However, autism is often accompanied by other disorders, including epilepsy, anxiety, hyperactivity disorder, and inadequate behaviour. As to intellectual ability, it may have both serious disorders and high cognitive ability.
Parents have to do everything by themselves
Kyrgyzstan-based Zhyldyz Sadykova is one of the first who founded the public association of parents of autistic children "Hand in hand".
"My grandson Daniyar Akeneyev is autistic. He is 14 now," Sadykova said. "He was diagnosed with it after a while. At some point, we noticed that he was not like other children: he did not want to contact people, did not respond to his name, played with toys alone. Back then, no one in Kyrgyzstan diagnosed "autism", and when we asked doctors about his behaviour, they said "the kid is OK", "children can be like this", "he will grow up", "wait, don't panic", etc."
Time passed, and Daniyar turned two. He could not speak and had no self-care skills. The situation got worse and the child developed hysteria. When they read about autism on the internet, Daniyar's family understood that the boy had all signs of the disorder. And they again started to look for good specialists.
"Daniyar's parents spent two years doing this," Sadykova said. "They were in Moscow, South Korea, Almaty, the USA. In the USA, their friends helped them find a good centre. My daughter-in-law Anara was told there that autism is for life. We were shocked to learn that this disorder cannot be cured, and we should do activities with the child very thoroughly and continuously. Before that, we had hoped to find some miraculous tablet and a doctor who would cure the boy."
"My grandson Daniyar Akeneyev is autistic. He is 14 now," Sadykova said. "He was diagnosed with it after a while. At some point, we noticed that he was not like other children: he did not want to contact people, did not respond to his name, played with toys alone. Back then, no one in Kyrgyzstan diagnosed "autism", and when we asked doctors about his behaviour, they said "the kid is OK", "children can be like this", "he will grow up", "wait, don't panic", etc."
Time passed, and Daniyar turned two. He could not speak and had no self-care skills. The situation got worse and the child developed hysteria. When they read about autism on the internet, Daniyar's family understood that the boy had all signs of the disorder. And they again started to look for good specialists.
"Daniyar's parents spent two years doing this," Sadykova said. "They were in Moscow, South Korea, Almaty, the USA. In the USA, their friends helped them find a good centre. My daughter-in-law Anara was told there that autism is for life. We were shocked to learn that this disorder cannot be cured, and we should do activities with the child very thoroughly and continuously. Before that, we had hoped to find some miraculous tablet and a doctor who would cure the boy."
It was not easy to find correctional methods that can be used to work with autistic children. Daniyar's mother earned a degree in psychology to work with her son. Later on, she met a Japanese, Chihiro Tamura, who turned out to be an autism specialist, at the Association of Parents of children with disabilities. He came to Kyrgyzstan to teach local doctors.
It is noteworthy that the ministry of health, ministry of social development and ministry of education said to the Japanese specialist that there were no autistic children in Kyrgyzstan. However, nearly 20 parents who noticed the signs of autism in their children came to Tamura's classes.
"Thus, Tamura started to teach parents on how to work with children," Zhyldyz said. "Some mothers learned better than others. Then we decided to join our efforts. In 2012, we established our organisation "Hand in hand"."
For almost 10 years of existence, the organisation invited many international specialists who provided significant financial and psychological support. They have achieved a lot, but still not enough, Sadykova said. According to her, in 2018, when the "Personal Assistant" payment system was introduced, it was understood that the payments would be granted only to parents or guardians of children with physical disabilities. However, the organisation insisted on paying to parents with autistic children, as well.
For almost 10 years of existence, the organisation invited many international specialists who provided significant financial and psychological support. They have achieved a lot, but still not enough, Sadykova said. According to her, in 2018, when the "Personal Assistant" payment system was introduced, it was understood that the payments would be granted only to parents or guardians of children with physical disabilities. However, the organisation insisted on paying to parents with autistic children, as well.
"Such children do need constant care. They may not be left unattended, not for a minute. Autistic children follow no rules, they can do anything they want to. Therefore, mothers always have to be next to their children, they cannot go to work and they lose their financial independence," - Zhyldyz Sadykova said.
Last year, according to Zhyldyz, the republican medical and social assessment board (MSEK) paid much attention to children with mental disorders and made some exemptions for them. In particular, previously parents had to gather documents every year, undergo assessment and get confirmation of autism in their child. This is necessary to get the disability status and to receive benefits. Many parents refused to pass all these procedures even if they needed money.
"The reason was that first children were sent to the Republican Centre for Mental Health (RCPZ) for two weeks, or even a month, and then to MSEK," Zhyldyz said. "And they had to stay there alone, without parents. Any change in their usual order of things could cause a serious stress in children. Even the rearranged furniture at home, say, a table or a couch affects strongly the child and may cause a fit of hysterics. And there is a totally unfamiliar environment in the hospital. Children get into a rage and doctors make injections to them to calm them down. And parents complained that after having been discharged from the hospital, many children lost their skills. All progress that had been achieved thoroughly for a long time was lost."
"The reason was that first children were sent to the Republican Centre for Mental Health (RCPZ) for two weeks, or even a month, and then to MSEK," Zhyldyz said. "And they had to stay there alone, without parents. Any change in their usual order of things could cause a serious stress in children. Even the rearranged furniture at home, say, a table or a couch affects strongly the child and may cause a fit of hysterics. And there is a totally unfamiliar environment in the hospital. Children get into a rage and doctors make injections to them to calm them down. And parents complained that after having been discharged from the hospital, many children lost their skills. All progress that had been achieved thoroughly for a long time was lost."
Now, it is not necessary to go to hospital to confirm the diagnosis, and the board confirms autism for a few years ahead.
"Of course, there are some changes for the better in 10 years, the state does some things for us," Zhyldyz said. "For example, the UN Convention on the Rights of Persons with Disabilities was ratified and they have to, whether they like it or not, take parental organisations into account, they invite us to discussions of some documents. But we had to press for it for years. No one from state agencies would come to us and ask "What problems do you have?"
Moreover, according to Sadykova, medical universities of Kyrgyzstan do not train specialists needed for autistic children. "However, the inclusive education concept was adopted two years ago. It requires that universities train necessary specialists," Zhyldyz said. "Unfortunately, because of Covid, political tempests and changes in structures, state agencies postponed many issues. I'd like to believe that this country will have everything gradually, step by step."
Gulmira Dzhumalieva, vice rector of Kyrgyz State Medical Academy, said to CABAR.asia that their university teaches autism spectrum disorders. Students study these topics as part of the general medicine and as general practitioners. Moreover, students who completed residency in psychology, psychiatry, neurology or genetic diseases may treat autism.
However, according to Dzhumalieva, it is up to every student. "We may not force everyone into deep study of the treatment of autism spectrum disorders," she said.
According to Nazgul Mirzamatova, head of children's department of the Republican Centre for Mental Health, Kyrgyzstan has few doctors who can work with autistic children. There are only nine specialists in Bishkek, and none in the regions.
"Children with autism spectrum disorders are recommended to work with speech pathologists," Mirzamatova said. "However, not everyone wants to study this area deeply because working with such children is very difficult."
However, according to Dzhumalieva, it is up to every student. "We may not force everyone into deep study of the treatment of autism spectrum disorders," she said.
According to Nazgul Mirzamatova, head of children's department of the Republican Centre for Mental Health, Kyrgyzstan has few doctors who can work with autistic children. There are only nine specialists in Bishkek, and none in the regions.
"Children with autism spectrum disorders are recommended to work with speech pathologists," Mirzamatova said. "However, not everyone wants to study this area deeply because working with such children is very difficult."
Health workers must have decent salaries to increase the number of qualified personnel. New doctors leave the country. They go to places where salaries and benefits packages are higher than in Kyrgyzstan.
In turn, public association "Hand in hand" can inform about autism only within their capacity – via social networks or the media. According to Sadykova, the question of low awareness of autism and children's disability in general on state TV channels or internet portals is always raised at the meetings with public agencies.
"For example, the second of April is the World Autism Awareness Day," Sadykova said. "But we carry out some campaigns, marches, press conferences for a whole month." According to her, the association has neither energies nor money to hold more far-reaching activities.
No access to education
The son of Indira Kubat kyzy, Semetei Ibraimov, is turning 10 this November. He is the eldest in the family, and there are two younger children in the family. After birth, the boy was diagnosed with sensorineural hearing loss (hearing disorder that is described by impaired ability to hear and understand sounds – author's note).
"At first, we were dealing with his hearing as we thought it was the cause of his development issues," Indira said. "We made a hearing aid and treated and trained him in this direction only. By the time he was five, we visited many centres and knew that none of training methods worked or helped my son. We passed the school admissions committee but Semetei was not admitted. They said that school methods will not work with him and the boy was unteachable."
"At first, we were dealing with his hearing as we thought it was the cause of his development issues," Indira said. "We made a hearing aid and treated and trained him in this direction only. By the time he was five, we visited many centres and knew that none of training methods worked or helped my son. We passed the school admissions committee but Semetei was not admitted. They said that school methods will not work with him and the boy was unteachable."
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When I was attending the programme for three months, I saw improvements. So, I understood this therapy fitted my son. And they diagnosed autism in my son.
Doctors didn't diagnose Semetei with autism. They said that he had some elements, but not the disorder itself. Semetei's family didn't believe their son had autism. After a while, Indira heard about the centre "Hand in hand" and learned they taught children individually, and she decided to go there. The mother and son took the course "Family and child". The course took three months and parents were taught how to work with the child and how to understand them.
Of course, it was a complicated process. During the course, every parent had to admit the fact of disease in the child. They had to admit there was no magic pill against autism; it was for life.
"The first and the most difficult barrier was to accept your child with the diagnosis," Indira said. "The supervisors of the course helped me a lot, they supported me and helped me to cope with it."
Semetei has been attending the centre for 2.5 years now. During this period, according to Indira, her son has made a good progress.
Semetei has been attending the centre for 2.5 years now. During this period, according to Indira, her son has made a good progress.
"By good progress I mean small successful steps," Indira said. "For me, every small progress of my son means something global. I am happy with all the small things he does."
The biggest magic, according to Indira, was that her boy started to ask her for something by the pointing gesture. In other words, he showed subjects and looked her in the eyes. As Semetei cannot hear and has speech problems, the specialists of the centre, by trial and error, found an alternative way of communication – by using cards.
"He shares them when he wants to ask for something. And he is successful in that," Indira said.
Semetei's relatives take him good, but when it comes to the society as a whole, the boy encounters discrimination.
"For example, it is a big problem to go somewhere with the child in public transport," Indira said. "The boy is very big, he's 10 now. When he was younger, people took him as a naughty child, but now people can see he has problems and he differs from all. Few people can take him quietly. Sometimes, people get his behaviour defensive, some people keep aloof from him, and sometimes come up against him."
"He shares them when he wants to ask for something. And he is successful in that," Indira said.
Semetei's relatives take him good, but when it comes to the society as a whole, the boy encounters discrimination.
"For example, it is a big problem to go somewhere with the child in public transport," Indira said. "The boy is very big, he's 10 now. When he was younger, people took him as a naughty child, but now people can see he has problems and he differs from all. Few people can take him quietly. Sometimes, people get his behaviour defensive, some people keep aloof from him, and sometimes come up against him."
One of the biggest problems in Kyrgyzstan, Indira said, is that autistic children have no access to education.
"There are specialised schools for children with special needs, but they have a conventional system of education that does not take into account the needs of children with special needs," she said. "An autistic child can hardly take any information, they need individual training, individual approach, assistance of a personal tutor. But not all schools take tutors or give consent to their presence."
Indira cannot come to work now as she has to commit herself to the child in full.
"The benefits we receive are not enough. You can see the food prices now," she said. "Moreover, autistic children need to undergo preventive treatment twice a year. It is not cheap – one small drug costs 1,200 som (14.15 dollars). Semetei needs to take drugs not to have problems with behaviour and health in the future."
Indira cannot come to work now as she has to commit herself to the child in full.
"The benefits we receive are not enough. You can see the food prices now," she said. "Moreover, autistic children need to undergo preventive treatment twice a year. It is not cheap – one small drug costs 1,200 som (14.15 dollars). Semetei needs to take drugs not to have problems with behaviour and health in the future."
Indira is dreaming of going to work to be able to maintain her children independently. But first, Kyrgyzstan must have some public facilities for autistic children where they can spend time. However, the country does not have such facilities.
Saltanat Mambetova, leading specialists of the ministry of education, said to CABAR.asia that the agency developed the regulation on accompanying children with disabilities at school.
According to her, twenty schools across the country will be implementing the pilot project under the document. According to the project, teachers will accompany children with disabilities, i.e. help children know the educational process and master training material. Teachers who will be tutors undergo special training now. The process of accompaniment is going to begin from the third quarter of this academic year.
It is expected that this regulation will ensure access to educational services to autistic children.
"However, everything will depend on the diagnosis," Mambetova said. "Doctors must decide whether the autistic child can study at school accompanied by a teacher or cannot."
Saltanat Mambetova, leading specialists of the ministry of education, said to CABAR.asia that the agency developed the regulation on accompanying children with disabilities at school.
According to her, twenty schools across the country will be implementing the pilot project under the document. According to the project, teachers will accompany children with disabilities, i.e. help children know the educational process and master training material. Teachers who will be tutors undergo special training now. The process of accompaniment is going to begin from the third quarter of this academic year.
It is expected that this regulation will ensure access to educational services to autistic children.
"However, everything will depend on the diagnosis," Mambetova said. "Doctors must decide whether the autistic child can study at school accompanied by a teacher or cannot."
Blamed me for giving birth to the child
Tynai Zheenbekov turned eight years old this year. He is the second child in the family. Mother, Aidai Abdyraeva, said that her eldest son was very troublesome, used to wake up at nights often. And in Tynai parents noticed that even in his first days he could sleep all night long. On the one hand, it made them uneasy, and, on the other hand, parents were glad they could get enough sleep.
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However, strange signs manifested after he turned one year old. We started to notice that he became very isolated. He didn't notice when I was leaving or coming, he didn't meet me.
Then the boy developed fits of hysterics, he often shouted and cried without reason. Moreover, Tynai could not talk or explain what he wanted.
"Fits of hysterics occurred for any reason," Aidai said. "If someone took his toy, he cried. If he couldn't reach something, or go outside, or wanted to drink, he cried. So we just focused on his eyes – If he watches some certain subject, we would give it to him right away. Thus, we further reinforced the problem behaviour, and the child developed such a link that if he was hysterical, he wouldn't be given anything».
Later, fits of hysterics grew stronger, and became stronger every year. To find out the reason for such behaviour, parents used to visit neurologists. Tynai took many drugs. They even visited healers and mullahs. Last time when Aidai visited the leading neurologist of Bishkek, Nurmukhamed Babadzhanov, she asked him to prescribe something new because old drugs didn't work for Tynai. Babadzhanov said there was nothing more to prescribe and referred them to the centre for autistic children.
"Fits of hysterics occurred for any reason," Aidai said. "If someone took his toy, he cried. If he couldn't reach something, or go outside, or wanted to drink, he cried. So we just focused on his eyes – If he watches some certain subject, we would give it to him right away. Thus, we further reinforced the problem behaviour, and the child developed such a link that if he was hysterical, he wouldn't be given anything».
Later, fits of hysterics grew stronger, and became stronger every year. To find out the reason for such behaviour, parents used to visit neurologists. Tynai took many drugs. They even visited healers and mullahs. Last time when Aidai visited the leading neurologist of Bishkek, Nurmukhamed Babadzhanov, she asked him to prescribe something new because old drugs didn't work for Tynai. Babadzhanov said there was nothing more to prescribe and referred them to the centre for autistic children.
Aidai and her son visited the centre "Hand in hand". Here she learned how to cope with the child correctly, to establish communication with him.
"At first, the problem behaviour of the boy got worse," Aidai said. "I wanted him to ask me or show something to me in a proper way. But after a month, he showed some progress. Tynai started to understand that good behaviour would be awarded and he learned to ask or show objects he wanted to take."
He stopped taking all medications for a while. According to Aidai, there are no tablets or pills against autism, so there is no use in spending money on medications.
Unfortunately, the relatives did not tolerate the boy's problem behaviour. According to Aidai, she has been blamed for the fact that Tynai was born like that.
"In general, the society in general have a bad attitude to such children," she said. "For example, previously we had lived on the fourth floor, and our neighbours from downstairs often complained that Tynai was running, stomping his feet, or jumping. We explained to them that the child was disabled and he didn't understand that someone was living downstairs. The neighbours did not want to listen to us and told us to move. Also, the boy could shout unexpectedly in public transport. Some passengers would just turn their faces away, but most of them watched him with deprecatingly."
"In general, the society in general have a bad attitude to such children," she said. "For example, previously we had lived on the fourth floor, and our neighbours from downstairs often complained that Tynai was running, stomping his feet, or jumping. We explained to them that the child was disabled and he didn't understand that someone was living downstairs. The neighbours did not want to listen to us and told us to move. Also, the boy could shout unexpectedly in public transport. Some passengers would just turn their faces away, but most of them watched him with deprecatingly."
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The society must be more loyal to autistic children. According to her, parents need material support from the state.
"Services provided by private centres for children with special needs are very expensive. Taking into account hard times today, many parents cannot afford paying for such services every month. Therefore, most children with disabilities cannot get help on time just because they don't have money."
Gulzada Akunova, chief specialist of the department of social services for people with disabilities and the elderly, said to CABAR.asia that the republic has a range of rehabilitation centres where children can obtain various services. However, almost all of them belong to commercial entities and children are treated there on a paid basis.
Gulzada Akunova, chief specialist of the department of social services for people with disabilities and the elderly, said to CABAR.asia that the republic has a range of rehabilitation centres where children can obtain various services. However, almost all of them belong to commercial entities and children are treated there on a paid basis.
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Much money is needed to open public centres, but now there are problems with financing, so construction of such facilities is not even discussed.
"However, we can see that the number of children with disabilities is increasing every year," Akunova said. "So, there may be the increase in payments under the Personal Assistant system in the future. Now the ministry of labour, social protection and migration performs calculations."
However, the time when the payments will be increased and the extent to which they will be increased is unknown.
However, the time when the payments will be increased and the extent to which they will be increased is unknown.
Author: Aigerim Konurbaeva
Edited by Timur Toktonaliev
Layout: Anisa Boimatova
Edited by Timur Toktonaliev
Layout: Anisa Boimatova
This article was prepared as part of the Amplify, Verify, Engage: Information for Democratisation and Good Governance in Eurasia project implemented by IWPR and funded by the Norwegian Ministry of Foreign Affairs, and mentoring program of the Development of New Media and Digital Journalism in Central Asia project implemented by IWPR with the financial support of the UK Government. The content of the article does not reflect the official position of the IWPR, the Norwegian Ministry of Foreign Affairs, or the Government of the United Kingdom.