Saima Wazed calls for adopting multi-sectorial programmes to address autism

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DHAKA : Saima Wazed Hossain, chairperson of Bangladesh National Advisory Committee for Autism and Neurodevelopmental Disorders, has called for adopting a multi-sectorial life span approach to create a more cost-effective, sustainable and supportive programme catering to families’ needs to address autism issues.

“There is no easily addressed solution to autism which could be implemented by altering existing medical practices. Instead, a multi sectorial life span approach would be required to create a more cost-effective, sustainable and supportive program catering to families’ needs,” she wrote in an article published in Inter Press Service (IPS), a global news agency, on Friday.

This article is part of a series of stories and op-eds issued by IPS on the occasion of this year’s World Autism Awareness Day to be observed on April 2.

Daughter of Prime Minister Sheikh Hasina, Saima is a specialist in School Psychology and a member of the World Health Organization’s Expert Advisory Panel on Mental Health.

In the article, she urged the developing countries to devise a mechanism to face the challenges of providing further knowledge on effective and sustainable programs and assist in decision making.

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

“Hence why we urgently need a mechanism by which the challenges and success stories of these individuals can be shared among both disability organizations and governments so it may provide further knowledge on effective, sustainable programmes and assist in decision making,” she said.

Saima said 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.

She said the complexity of autism and other neurodevelopmental disorders (NDDs) pose a significant challenge when trying to balance the development of medical services while creating socioeconomic opportunities for an individual’s unique skillset. The primary task of mitigating the tremendous emotional, social and financial ordeal for families remains a persistent challenge.

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

She said experts, self-advocates, caregivers and policymakers will meet for three days in Thimphu (visit 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.

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

Due to the lack of funds and resources, Saima said, 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,” she added.

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

“Our mission for families began in the 1990s with the implementation of comprehensive disability policies along with the formation of national forums and disability organizations,” she added.

Saima said since 2008, World Autism Awareness Day on April 2 is recognized and celebrated with a national event in Bangladesh. This event has involved a cultural show performed by PWD’s with honorable Prime Minister Sheikh Hasina as the guest of honor.

“Individuals and organizations were recognized for their work, while getting an opportunity to interact with the Prime Minister to express any concerns,” she said.

Saima said despite progression of autism awareness in the population, the real turning point for change in South Asia came with the international conference on autism organized in Dhaka on July 25th 2011.

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

She observed that 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 the conference to be truly unique.

This event brought about an unprecedented change in the societal attitudes about autism and disability and since then, previously rejected newspaper articles by parents and experts began to be regularly published in Bangladesh daily papers, she said, adding that talk show discussions on health matters also included the topic of disability.

Saima said, “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 taskforces comprising 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,” she added.

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

This multi-faceted approach prioritized the need for early screening and intervention, supportive educational programs, employment training, and social safety net programs. This sent an important message to stakeholders and policy makers explaining how there is no easily addressed solution to autism which could be implemented by altering existing medical practices, Saima said. Instead, a multi sectorial life span approach would be required to create a more cost-effective, sustainable and supportive program catering to families’ needs, she added.

She said the last four years of multi-sectorial 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 stakeholders, particularly individuals with neurodevelopmental 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,” Saima added.

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