On autism issues

12 Mar 2013

On autism issues

Lola Karimova supports autist people

A considerable increase in the number of people with autism spectrum disorders has become a matter of concern for scholars and physicians.

The first medical papers with descriptions of people affected by autism (though the term was not used at the time) appeared in the 18th century. French researcher Jean-Marc Itard made the first systematic attempt to differentiate children with “intellectual mutism”. American child psychiatrist Leo Kanner was the first scientist to clearly define autism in his paper entitled “Autistic Disturbances of Affective Contact,” which was published in 1943. In the 1970s, there was substantial progress in the diagnosis and studies into the etiology of autism as well as the area of working with autistic children.

Unfortunately, the problem of autism is a rather topical one for Uzbekistan. At present, there is no systematic approach to diagnosing and treating autism in the country. The difficulty also boils down to the fact that autism is a phenomenon that exists at the crossroads of different areas. The integration of children with autism involves a whole set of measures, mostly social ones, as well as the engagement of various specialists, including pediatricians, physicians specializing in the matter, educators, psychologists and speech pathologists. However, there is no such unified system in place, and parents are often left to their own devices to deal with the issue.

Western countries have various approaches to training, education and adaptation of people with autism. Foreign experts’ approach is often based on the recognition of the uniqueness of each person. Therefore, it is suggested that the main focus should be not on fixing “shortcomings”, but rather on creating conditions for the special people, in which they can live and be themselves.

It is necessary to develop a set of psycho-correction techniques, as well as to train professionals in techniques whose effectiveness has scientifically been proven. International experience plays an important part in this. To change the existing approach to the problem in our country, we need to learn from the experience of countries which have made significant headway in the treatment and rehabilitation of people diagnosed with autism. It should also involve the pediatricians in the primary health care sector. Professionals need to be trained in early diagnosis, so that they are able to identify the risks and refer a child to a specialist.

As far as studies into autism are concerned, our health care system has an outdated medical approach and autism is considered as a kind of mental retardation, a condition which falls into the category of mental illnesses. This consequently leads to distorted medical and educational approaches with all the ensuing consequences.

Raising the public awareness of autism is of great significance. There are cases when parents are ashamed of these “different” children, because society itself in our country does not accept them. And this is completely wrong! The main problem is that the parents are concerned that their child is different from their peers, and “hide” him or her, and, as a result, they themselves often get isolated from society. This problem should be addressed in the first place: it is necessary to do everything to ensure that parents do not shy away from bringing up their problems and are not afraid of speaking up about it. It is of paramount importance to change the existing stereotypes and stigmas about people with special needs.

The fact that society is not ready to accept people with disabilities and understand their problems is a direct result of the lack of information on this subject field. Consistent work in raising the public awareness of autism, as well as various forms of disabilities in general, will contribute to the better understanding of people with special needs as well as their integration into society.
Autism was singled out as one of the major problems by the World Health Organization back in 2001, which was declared by WHO as the Year of Mental Health. In 2008, 2 April was declared by UN General Assembly as World Autism Awareness Day, which has since been marked annually.
As far as Uzbekistan is concerned, the National Centre for the Social Adaptation of Children has an experience of working with autistic children. As of today, 15 children, who were diagnosed with autism by the Centre’s specialists, are receiving comprehensive assistance at the charitable organization.

To mark World Autism Awareness Day this year, we will be holding an international conference which will be attended by specialists from a number of countries.

I would like to use this opportunity to thank parents for their continuous support and assistance in the formation of public opinion, as well as in the implementation of the tasks we set for us. We hope that our joint efforts will give these children a chance to adapt to the world around them.

Lola Karimova-Tillyaeva
The Chair of the Board of Trustees
of the You are not alone foundation and
the National Centre for the Social Adaptation of Children