‘Bangladesh a global leader on autism’

Bangladesh has become “a global leader” on autism, Saima Wazed Hossain had said, days after the World Health Organisation (WHO) adopted a Dhaka-sponsored resolution on neuro-development disorders.

Known by her nickname, Putul, in Bangladesh, Saima spearheaded campaigns in support of the resolution before it was passed in the just-concluded world health assembly.

In a Skype interview on Tuesday, she told bdnews24.com that the resolution would ensure that member states keep autism in their public health policies in a way to adopt a “holistic approach” to address neuro-development disorders.

A US-licensed school psychologist, Saima is also a member of WHO’s prestigious “Expert Advisory Panel” on mental health.

In the interview, she spoke on the need of early diagnosis and early interventions in neuro-development disorders, but, above all, stressed a change of “mindset” towards people afflicted with mental health problems or physical disabilities.

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Bangladesh was under the spotlight in autism campaign when Dhaka hosted a mega conference in July 2011, drawing regional leaders, including Indian Congress Party Chief Sonia Gandhi.

It was largely the endeavours of Saima, daughter of Prime Minister Sheikh Hasina, which brought South Asian nations within the South Asian Autism Network’s (SAAN).

Autistic children are unable to pick up self-care tasks – dressing, self-feeding, using the toilet etc. – by watching and imitating. They avoid eye-to-eye contact, and have a single-track thought process.

The problem usually begins to show up in the first three years of life, affecting the normal development of social and communication skills.

Bangladesh has no data on the number of children suffering from the disorder, but a latest US study finds one in every 68 children to be autistic - a rate 30 percent higher than what it was three years ago.

No one can say why, but the trend is rising.

But those gifted children show particular talent if given proper education and training exercises.

Saima said early diagnosis and thereafter immediate interventions like speech and language therapy and behavioural therapy could “reduce their disabling conditions” of the disorder.

But she lamented that a resource-starved country like Bangladesh lacked trained manpower and adequate understanding of the problem.

She said brain developed “pro-actively” till the age of five.

“So we have to intervene before that with evidence-based interventions”.

She said the focus of the WHO resolution was not to find the cure, but to ensure management and care.

“It’s about management and care of the neuro-development disorder of the individuals and the societies as a whole”.

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She said the resolution would enable member states to develop their own resources and build capacities to address neuro-development disorder.

But, for that, she stressed a “multi-sectoral holistic approach”.

She said current interventions were ‘one-on-one’ based and “it takes time and its very costly”.

But in countries like Bangladesh, where “we lack specialists, how can we get enough people for the therapy”, she said, suggesting community mechanism to identify the neuro-development disorders with ‘non-specialists’.

“Once identified, interventions have to be made”.

“If we tell parents, your baby is autistic but we don’t have any intervention tool; you will have to wait for a therapist for two years, then how will they be benefited”.

“But these two years are very critical for brain development”.

She said even Canada, the US, and the UK cannot manage all neuro-development disorders with their “highly specialised techniques”.

“Researches show that those are expensive.

“One-on-one treatment without specialist treatment would not work. It takes two years for speech and language therapy”.

Saima, however, said society had to understand those children.

“They have sensitivity, in sounds, even touch. They cannot handle normal situation like others. Anyone who does not understand them, may find it odd that a 20 year old man behaves like a five year old child.”

“They would need lifelong support,” she said and, for that, she said all stake holders would have to be trained.

She said there were online trainings, which, she said, were as effective as the conventional ones. “It’s proven,” she said, calling for the best use of technology.

But she said the trainings must start from the family.

“Social exclusion starts from home. There are families who do not take child (with autism) outside their bedroom,” she said.

Saima in her first interview to bdnews24.com in 2011 after the autism conference spoke about the creative use of resources, and the reduction of social stigma to address autism.

On Tuesday she said: “Now, at least, parents say I have a kid with autism. They don’t feel embarrassment.”

“But still, a lot needs to be done to change the mindset of the society”.

She said parents still have to wait in a queue to see a doctor for their autistic children in some places.

“These children are so sensitive that even a normal sound comes as an explosion to them.

“A simple touch can be very painful to them,” she said, adding that: “We have to identify barriers and address them gradually.”

She also referred to the recently passed legislation under which a trust would be formed to look after autistic children when there is no one to help them.

“It’s a legally binding way to protect them,” Saima said.

She also stressed regional cooperation under the SAAN network, which was formed after the 2011 conference.

In this regard she said the change of political leadership in India would not affect their work.

“They (India) are still supportive and interested in working closely,” she said referring to her recent meeting with Indian authorities on the sidelines of the health assembly in Geneva in May.

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“The difficult part was to get commitment from experts and bureaucrats of both sides. But fortunately we already have that (commitment)”.

But she thinks Bangladesh now has responsibility as a global leader.

“Being a global leader, we have to do something for all,” she said as she felt Dhaka should host another conference or health ministers meeting like the one in 2011.

“We hope to organise at the end of 2015 or in 2016,” she said, adding that it’s “a huge task, very expensive (to hold a conference)”.

She wrote a chapter in a book published from London based on renowned Shafallah Forum’s conference crisis, conflict and disability in Doha.

The chapter highlighted Bangladesh’s experience on managing people with disabilities during natural calamities.

“I always hear Bangladesh’s good work does not get adequate publicity. I tried to do that,” she said.

She is never heard talking politics in public speeches in Bangladesh and abroad, though she is the daughter of Sheikh Hasina and granddaughter of Bangladesh’s founding father Bangabandhu Sheikh Mujibur Rahman.

“I am a member of a political family, but I am psychologist,” she said.