How philanthropy is changing perceptions of autism in Central Asia


Almaz Sharman


Autism as an independent disorder was first described nearly 80 years ago, but awareness of the problem of autism around the world is a relatively recent phenomenon. Just 17 years ago, in 2007, the United Nations General Assembly proclaimed 2 April as World Autism Awareness Day.

For many years, autism diagnoses were practically unheard of in Central Asian countries. Instead of receiving adequate medical and psychological support, many children were misdiagnosed and isolated from society. A diagnosis of schizophrenia is still given in a large number of cases, and the myth that autism is ‘contagious’ and a ‘punishment from God for committing sins’ is common among the general public. Autism statistics in these countries remain incomplete or non-existent.

The low level of public awareness around autism has been and remains one of the main reasons why autistic people and their families face social stigma, discrimination, and isolation on a daily basis.

In recent years, however, the situation has gradually improved thanks in part to the efforts of philanthropic organisations. Kazakhstan, which has been especially active in this field, could serve as an example for other Central Asian countries.

Thanks to the efforts of the Bulat Utemuratov Foundation, 13 Asyl Miras autism centres are operating in 12 cities across Kazakhstan. These centres run a programme called One World for All that includes six different types of intervention programmes aimed at developing social and play skills in children with autism spectrum disorders (ASD): early support, learning skills, life skills, an intensive course, social skills and JASPER (Joint Attention, Symbolic Play, Engagement and Regulation).

JASPER is a play-based intervention that teaches social communication skills to young children with autism. It was developed by Dr Connie Kasari at the University of California, Los Angeles (UCLA). Over 10 years, around 14,000 children with ASD took part in an intervention programme at the Asyl Miras centres, and about 74 percent of them doubled their social skills considerably.

The foundation is working closely with world leaders in the field of autism, including the Kasari Lab UCLA; the Marcus Autism Center, in Atlanta; and Naked Heart foundation.

The Bulat Utemuratov Foundation signed a memorandum with the president of the International Society for Autism Research (INSAR), Dr Kasari, that put plans in place to open a regional Kasari Lab in Kazakhstan. The presence of international experts will promote recognition of, and confidence in, autism-related awareness-raising initiatives, as Central Asians often treat other countries with more developed social infrastructure as role models.

‘Given that the state is often slow-moving, and bureaucratic delays take up valuable time, public–private partnerships are especially important.’

Thanks to the major awareness-raising efforts carried out by our foundation and other charitable organisations, the attitude towards autistic people in Kazakhstan is gradually changing. We are trying to convey to society that autism is not an illness; it is a condition that can be addressed with the help of developmental and educational programmes that can greatly improve the social skills of children with ASD.

We have observed that parents are already talking more openly about the problem, are not trying to limit the socialisation of their children with autism and are actively seeking assistance. Additionally, society has become much more broad-minded towards children with ASD, and many people have even begun adhering to the philosophy of neurodiversity.

We also see that our neighbours in Central Asia, where the situation when it comes to helping children with autism is very challenging, are now moving in a similar direction. Philanthropic organisations are at the forefront in the region in terms of dealing with the problem. In Kyrgyzstan, for example, Hand in Hand, a non-governmental organisation for parents of children with autism and the only centre of its kind in the country, focuses on these issues, and in Tajikistan this work is done by IRODA, another organisation for parents of children with autism.

Why are philanthropic organisations, and not the state, taking the initiative?

This is because philanthropic organisations see the problem and can mobilise resources quickly. It is rather difficult for the state, no matter how willing it is, to do this because of all the red tape. This problem is not unique to the countries of Central Asia; it exists in many countries around the world, including in Asia, Europe and North America.

Nonetheless, and despite positive developments, philanthropists do not have sufficient resources to solve all the problems associated with autism. The state must provide material assistance to the families of children with autism in cases where it is practically impossible for parents to work and look after their other children, as well as support the efforts of philanthropic organisations in terms of legislation, including by easing the tax burden.

Given that the state is often slow-moving, and bureaucratic delays take up valuable time, public–private partnerships are especially important. We can see from our own example how effective this type of partnership can be. We share our research and scientific studies with government agencies; the state, in turn, adopts them and allocates resources for their implementation.

International cooperation, which can help in the implementation of the latest scientific approaches, also plays a key role. Conferences, memoranda of understanding and collaborative research all contribute to the exchange of knowledge and make it possible to find the different points of view necessary to solve the problems that people with ASD face all around the world.

We are very proud of our achievements, but we are part of a bigger picture. We do not consider ourselves a unique hub, and we continue to learn and collaborate with our colleagues in the region.

We are introducing new methods for integrating children with ASD into society and hope that our neighbours in Central Asia will adopt the same approach. They may have fewer resources, but we are ready to help them, to share our experience and knowledge. In recent years, we have taken a huge step forward in improving the lives of children with ASD and their families in Kazakhstan, but seeing that many problems still remain, we are not going to stop there.

Recently, the number of children with ASD has been increasing around the world, which is partly a result of better diagnostic techniques, and Central Asia is no exception in this regard. This means that society will increasingly have to face the problems associated with autism spectrum disorders and, as children with ASD grow older, they will have to deal with a range of new psychological and social issues associated with their adaptation in society. That is why scientific knowledge about, and public awareness of, autism are becoming more important than ever.

Almaz Sharman is the President of the Academy of Preventive Medicine and is the Chairman of the Board of Trustees of the Bulat Utemuratov Foundation, a multi-project foundation established in 2014.

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