Autism: Responding to a global challenge

Autism as an emerging global health challenge where on average nearly 1 out of 88 children are being diagnosed with this disorder. According to the Centers for Disease Control (CDC), in the United States 1 in 88 children (1 in 54 boys and 1 in 252 girls) are affected. This means that there are more children affected by autism than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined.

As Chair of the National Advisory Committee for GAPH Bangladesh, I would like to thank you from the bottom of my heart for supporting all our efforts so far. The GAPH-Bangladesh Initiative is breaking age-old barriers and treading on new paths. The committee which is made up of four task force groups on Awareness and Advocacy, Education, Services and Research (comprised of parents and professionals) is soon to be expanded to include an inter-ministerial task force and an inter-organizational implementation task force, which will involve government officials and representatives of different organizations and groups working with disability in Bangladesh. I would like to take this opportunity to share with you some of the fruits of our efforts so far.

With the voluntary participation and tremendous hard work from everyone we have compiled a situation analysis document that maps existing resources and identifies gaps in services for autism and neuro-developmental disabilities. We have translated and adapted the Autism Speaks' Community Toolkit which can be used by parents, teachers and other service providers working with those with ASD. In addition, we have partnered with BMRC and DG Health to train community health workers using a yet to be published module for ASD and mental health developed by WHO and Autism Speaks.

The landmark Dhaka Declaration that was unanimously ratified by the 11 countries in attendance for our International Conference on Autism on July 25^th 2011 is a recognition that we need stronger and more coordinated actions both regionally and globally to promote accessibility to quality mental health services. We need to strengthen our capacity to address the needs of these children and their families. We need to raise awareness about the rights of those with autism and neurodevelopment disabilities and our responsibility to treat them as equal citizens of our country. We need to improve the capacities of our professionals so that integrated care services can be provided from the primary to the tertiary levels. Allocation of both human and financial resources for the implementation of priority actions needs to be made. We need to keep in mind that provision of care is as close as possible to families' homes and schools as it is necessary to promote participation in family life and create greater social inclusion. We urgently need to establish measures for assurance of quality services. Successful achievement of these goals requires effective communication across health, education, and social services sectors as well as collaboration with professionals, advocates, and families.

In Bangladesh, as in many developing countries, neurodevelopment disabilities such as autism and child mental health disorders are still seen through the lens of misinformation, even by healthcare professionals. Even when officials take steps to remedy autism-related policy deficits, the shortage of specialists in the field continues to limit progress. The dissemination within a community of a modern definition of autism is a complex, multi-factorial challenge, and one that can only be met with scientific evidence. Unfortunately, while most public health officials around the world recognize if not an already existing crisis, little is being done to address it systematically, including establishing key population-based statistics of prevalence. The lack of data deprives communities the opportunity to formulate and implement evidence-based public health policies that are culturally appropriate, and economically feasible.

This is a critical period in the history of disability and development particularly in Bangladesh. It is of the utmost importance that appropriate planning and suitable action be taken in order to change the lives of millions of persons touched by these disabilities.  The importance of political will cannot be overemphasized—but it needs to be translated into sustainable strategies, multidisciplinary planning and evidence based actions. Today, let us all take a pledge to work together hand in hand to make the dream of our founding father, Bangabandhu Sheikh Mujibur Rahman come true. Let's make our country 'A Shonar Bangla'– a place where people with all abilities can flourish and succeed.

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Saima Hossain Putul is daughter of prime minister Sheikh Hasina. The article is based on her speech read out at the inaugural ceremony of the fifth World Autism Awareness Day on April 2.