Postcard from Bishkek

One of the issues that has attracted a lot of attention here in recent times is the provision of education for children with Special Needs … which is a little surprising because it is one of those issues which is so often “pushed into the background”.

One of the groups of children that have “special educational needs” are those who are diagnosed with Autism … and today happens to be World Autism Awareness Day, established by the UN General Assembly in 2007 and this will be the seventh such day. Each year, autism organizations around the world celebrate the day with unique fundraising and awareness-raising events.

Autism is a neurological “disorder” that usually manifests itself in the early years, (possibly as early as at an age of six months but the clinical definition states that the symptoms emerge by the age of three).  It is typified by symptoms such as communication difficulties, (both verbal and non-verbal), restricted interests, (such as focusing on a specific topic such as a particular TV show), and repetitive behaviour, (such as repetitive movements like hand flapping, compulsive behaviour following self imposed rules which can exhibit itself as ritualistic behaviour showing a resistance to change, and actions that can sometimes lead to self injury).  It can, however, take different forms and there are several conditions that have been discerned, and different symptoms can also present themselves.  These symptoms continue through to adulthood, although often become muted.

On the other hand, some people who are diagnosed as autistic show unusual abilities, such as memorizing trivia or performing arithmetic feats.

The phenomenon is little understood and although there may be a genetic basis, some cases may be associated with agents which cause birth defects – perhaps heavy metals, pesticides or some vaccines – however, this is somewhat controversial.  In fact a newly published report in the New England Journal of Medicine suggests that patchy changes in the developing brain long before birth may be the cause of the symptoms of autism.

It affects the way the individual processes information and their social adaption – many people diagnosed as autistic lack the intuition about others that most people take for granted.

It’s considered to be quite rare – occurring in as few as 1 or 2 people per 1000, (although in some countries – the United States for example – the figure is much higher), and it affects boys more than girls.

Although some people consider autism to be a “disorder” or illness and search for a “cure”, (because of the highly individualistic nature of the symptoms there are also a wide variety of techniques employed as therapies, which aim to increase the quality of life and function independence of the “patient”), others consider it as a “difference” and that it is possible for individuals to lead a life with certain accommodations.

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Special Needs Education is actually quite an important issue, affecting a large number of people … according to government statistics, there are over 22000 children with disabilities in the country.

One NGO, (Non-Governmental Organization), called “Hand n Hand“, (an association of parents of children with autism), has just agreed with the Education Department of the Bishkek Mayor’s Office to implement a new project to establish a class in one of the city’s special schools for children with autism as from September.  

It’s a small project – with places for just seven children – with a classroom and also a dedicated relaxation room.  However, it’s a start and welcome news … and will hopefully help to raise awareness of the issue in the public arena.

Apart from the immediate beneficiaries of Special Needs provision, the children themselves, there are the families who have to cope with considerable amounts of stress, coming to terms with and learning how to cope with the specifics of their child’s condition, perhaps economic hardship making special arrangements for the care of the child and dealing with the social pressures .  (Indeed, according to news reports, many such children are not placed in schools at all but are kept at home.)  Then, there is the question of training of personnel in the voluntary self-help groups, health and educational services and the attitudes in the wider community.

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On a similar, but wider scale, the British charity HealthProm has undertaken a number of projects aimed at helping children with disabilities, (intellectual and physical – including children with Autism), their families and also the wider community.

Since 2008, for example. they have been working with the NGO Association of Parents of Disabled Children, (ARDI), and Shoola Kol based in Bokonbaevo, to support the families of children with disabilities in Bishkek and Issyk Kul with a view of trying to prevent the children, (from birth to age seven), from having to enter state institutions.   They provide information, community based support services based on two new day centers and a minibus to provide transport services, and other emotional and practical support.

This was followed in 2011 by another project, funded by the Interchurch Organisation for Development Cooperation, (ICCO), aimed at supporting children with intellectual difficulties and their families in the Talas region, once more supporting and strengthening Family Support Centers and community based support groups together with ARDI, Shoola Kol and the Nura Bala NGO based in Talas.

Most recently, starting in 2013, they received funding once more from the Big Lottery Fund and also the Nryan Guinness Charitable Fund, to work with Kelechek, another NGO, to work in all seven oblasts supporting community groups, in particular providing pre-school provision.

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