Reducing discrimination through innovation

A comprehensive plan is needed to tackle autism and other NDDs /BIGSTOCK

The task of mitigating the ordeal of families dealing with autism remains a persistent challenge

Within the last five years, thanks to political support and national education, autism awareness in Bangladesh has grown immensely.

Due to a lack of funds and resources, providing full comprehensive evidence-based services for those in need is not yet possible, but with a continuation of our current progression, it is certainly an attainable goal.

Credit for our tremendous success in providing public awareness and understanding of the challenges faced by families with autism is ultimately to the dedication and resilience of those very families.

Our mission for families began in the 1990s with the implementation of comprehensive disability policies, along with the formation of national forums and disability organisations.

Since 2008, World Autism Awareness Day on April 2 is recognised and celebrated with a national event in Bangladesh. This event has involved a cultural show performed by PWDs with our honourable Prime Minister Sheikh Hasina as the guest of honour.

Individuals and organisations were recognised for their work, while getting an opportunity to interact with the prime minister to express any concerns.

Despite progression of autism awareness in the population, the real turning point for change in South Asia came with the international conference on autism organised in Dhaka on July 25, 2011.

What differentiated this conference from others in the region was the integration of various individuals from scientific, personal, and political backgrounds.

The presence of prominent political figures such as Sonia Gandhi, Prime Minister Sheikh Hasina, as well as many other first ladies and ministers from the region allowed our conference to be truly unique.

This event brought about an unprecedented change in the societal attitudes about autism and disability. Since then, previously rejected newspaper articles by parents and experts began to be regularly published in Bangladesh’s daily papers. Talk show discussions on health matters included the topic of disability.

The word “autism,” which did not exist in our language, has now become a household term, and frequently, if unfortunately, used as a synonym for disability — or as we say in Bangla “protibondhi.”

The conference was followed by the formation of four task forces comprised of parents and experts in the field. Additionally, I appeared in numerous television interviews where I described autism and shared a personal message to end discrimination and shame.

At the recommendation of the task force, a parents’ forum was established, followed by the formation of a national steering committee in 2013, comprised of eight ministries headed by the highest non-elected government officials, which are supported by senior advisers and technical experts.

We urgently need a mechanism by which the challenges and success stories of these individuals can be shared among both disability organisations and governments

This multi-faceted approach prioritised the need for early screening and intervention, supportive educational programs, employment training, and social safety net programs.

This sent an important message to stake-holders and policy-makers, explaining how there is no easily addressed solution to autism which could be implemented by altering existing medical practices. Instead, a multi-sectorial lifespan approach would be required to create a more cost-effective, sustainable, and supportive program catering to families’ needs.

The last four years of multi-sectoral planning by the National Steering Committee has enabled the inclusion of disability in the government’s development and economic planning. With significant political support, the primary stake-holders, ie individuals with neuro-developmental disorders (NDD) and their families, continue to play a significant role in shaping policies and implementing programs.

This involvement of several ministries ensures significant awareness for autism and all disability matters; however, our unique and comprehensive approach is challenged by a limited growth in human resource development and the lack of a mechanism for monitoring the efficacy of projects and fund disbursement to ensure sustainable evidence-based programs particularly in the social sector.

Global awareness and enhanced understanding of autism has resulted in increased diagnosis, demand for treatment, and development of innovative approaches; many of which remain isolated to research settings or unpublishable in scientific journals.

Additionally, due to the high cost and copyright laws, many programs in low resource countries remain similarly isolated and unshared. Moreover, programs requiring linkages between existing infrastructures with inter and intra-disciplinary collaboration are a particular challenge for developing countries.

Hence, we urgently need a mechanism by which the challenges and success stories of these individuals can be shared among both disability organisations and governments, so it may provide further knowledge on effective, sustainable programs, and assist in decision-making.

The complexity of autism and other NDDs pose a significant challenge when trying to balance the development of medical services while creating socio-economic opportunities for an individual’s unique skill set.

The primary task of mitigating the tremendous emotional, social, and financial ordeal for families remains a persistent challenge.

This month, Shuchona Foundation with WHO-SEARO is paving the way towards implementation of international resolutions on autism by organising a conference in Bhutan for the ministries of Health and Family Welfare of Bhutan and Bangladesh.

Experts, self-advocates, care-givers, and policy-makers will meet for three days in Thimphu (visit www.ANDD2017.org) to discuss identification and interventions methods, issues on education and employment, and help develop a collaborative comprehensive plan for low resource settings that all countries can emulate.

By: Saima Wazed Hossain

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