Eradicating the \\\'curse\\\' of autism

Autism is a range of complex neurodevelopment disorders known as the Autism Spectrum Disorders (ASD), which has an effect on normal brain functioning characterised by social adaptation impairments, communication difficulties, and by restricted, repetitive or stereotyped behaviour. It also affects how the 'victims' make sense of the world around them. The seventh annual World Autism Awareness Day (WAAD) is being observed today (April 02). Every year, this day is observed with unique fund-raising and awareness-raising events by the autism organisations around the globe. World Autism Awareness Day is about more than generating understanding. It is a call to action. This Day has been observed every year since 09 September, 1989. On November 01, 2007, the United Nations called for a day each year to be designated as World Autism Day. On December 18, 2007, the UN General Assembly designated April 02 as World Autism Awareness Day by a resolution to highlight the need to help improve the lives of children and adults who suffer from the disorder, so that they can lead full and meaningful lives.
World Autism Awareness Day (WAAD) aims to increase our knowledge about people, especially children, with autism. The day often features educational events for teachers, health care workers and parents, as well as exhibitions showcasing work created by children with autism. The main four components of the UN resolution for declaring this Day are: the establishment of 02 April as WAAD; participation of UN organisations, member-states, NGOs and all private & public organisations in WAAD; raising awareness of autism at all levels in society; and, finally, to ask the UN Secretary-General to disseminate the world body's message to the member-states and all other UN organs.
Autism is known as a complex developmental disability. Experts believe that autism presents itself during the first three years of a person's life. Autism disorder varies widely in severity and symptoms and may go unrecognised, especially in mildly affected children or when it is masked by more debilitating handicaps. The very early indicators may include no babbling or pointing by age 1, no single words by 16 months or two-word phrases by age 2, poor eye contact, loss of language or social skills, no smiling or social responsiveness, excessive lining up of toys or objects, no response to names etc.
Autism affects girls and boys of all races and in all geographical regions and has a large impact on children, their families, communities and societies. Statistics shows that 1 in every 100 individuals in the world suffer from an Autism Spectrum Disorders (ASD). The susceptibility to autism is more often in boys, about four times as girls and the ratio is currently rising in many countries around the world. The Centre for Disease Control and Prevention reported that 20 per 1000 persons in the United States are diagnosed with the Autism Spectrum Disease.
Considering the population of Bangladesh, finding a large number of people suffering from autism is, therefore, not surprising. "An issue that is hidden inside the closet" is perhaps the best way one could describe the fate of the people suffering from autism in Bangladesh.
Autism is a condition that was identified in 1943, but it still remains largely an unknown one in Bangladesh. The unfortunate part, of course, is the lack of research in the field in the country. With no means or hope of leading a decent life and with a public system that lacks the basic facilities, people suffering from autism in Bangladesh are compelled to lead a life that is mostly concentrated within the four walls of their houses. It is estimated by the Ministry of Social Welfare that the total number of persons with ASD (Autism Spectrum Disorders), could be as high as 1.4 million, of whom only a few hundred have been diagnosed. One estimate also shows that one in every 500 children in Bangladesh has autism, meaning that the approximate number of children with ASD in the country is no less than 280,000. The general attitude towards autism is mostly negative, and it is seen as a social barrier.  Even today, autism is considered a 'curse' in the illiterate communities, and children with ASD are viewed as those "possessed by the Devil".
Because of being a subject of social stigmatisation that many have to face due to the neurological disorder, researchers in Bangladesh often term autism more of a human rights-oriented problem rather than a medical problem. Children can't go to school, families prefer locking the members suffering from autism within the house; many people recognise it as the result of ill-doings by the parents, and, at one point of time, there were rarely any quotas in the public sector for them. On the other hand, contributing to this field turns out to be difficult because of the non-availability of reliable data about autistic children, no specific policy, poor awareness on the part of the masses, shortage of specialists on autism, educational problems like dearth of special curriculums and trained teachers, shortage of medical facilities and equipment, and, finally, no in-depth research on autism etc.
The dearth of knowledge is one of the major setbacks, which needs to be worked upon by the concerned officials. Formulation of an autism-related policy and its implementation, awareness-building among the masses, improving the capacity of professionals on autism, providing educational and medical facilities to sufferers, changing attitudes towards autism, training the teachers and health workers, and expanding the existing government and NGO programmes - all these are crucial to eradicating Autism Spectrum Disorders from Bangladesh.
Apart from it, there is the need for regular workshops, seminars, and the launch of special organisations that should constantly help individuals get enriched with more knowledge and information about autism.
The writer is a student of Final Year, Institute of Social Welfare & Research, University of Dhaka.
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