Dhaka, July 30 (bdnews24.com) – ‘Creative’ utilisation of resources can bring smiles to the autistic children in Bangladesh where family bonding, robust healthcare facilities and IT infrastructure-like ‘important tools’ are in place for helping those gifted kids.
Saima Hossain Putul, the chief architect of the just-concluded mega conference on autism in the capital, feels there is no need of additional investment in autism care. What is needed is to be ‘creative in utilising the existing resources’.
“We are not setting up anything new. We want to develop what already exists. I want cooperation, collaboration and partnership.”
She also suggests incorporation of autism into the existing government programmes.
BANGLADESH SHOWS THE WAY
The USA-licensed school psychologist and daughter of prime minister Sheikh Hasina Saima, in an exclusive interview with bdnews24.com said the conference was ‘the biggest boost for those who work on disability’.
Global research organisation Autism Speaks in collaboration with Bangladesh government organised the high-profile event that heard Indian National Congress president Sonia Gandhi, prime minister Sheikh Hasina, Sri Lankan first lady Shiranthi Rajapaksa and Ilham Hussain, the wife of the Maldivian vice president.
Representatives from the Middle East countries and the United Nations also attended the conference.
“We garnered support from regional political leaders, experts and international institutions to generate greater awareness of autism.”
According to Saima, Bangladesh has become a ‘role model’ for autism awareness after the successful completion of the first-ever international conference in the region.
“It’s just the beginning…larger tasks lie ahead,” she said.
The conference helped garner global support for the disability, she said. “We have given a direction to autism care. Those who came (to the conference) stand solidly behind us…hundred percent.”
CALL TO PARENTS
She advised the parents of ’special kids’ to come forward. “They are the best advocates. They can put forward the issue.”
“I am with you,” she told parents, “please let me know how I can help you. You are my guide and you are my teacher.”
“It’s (autism) such an issue that everyone is directly or indirectly affected. There is much about it we still do not understand. It’s a complex (neuro) disorder.”
The soft-spoken psychologist said every child is individually affected. “It’s a specialised issue.”
“No one can diagnose it considering a single trait,” she said, “It has multiple factors.”
“You have to see their language skills, mannerism, intellectuals, gross and fine motor skills and social skills to diagnose.”
She said even medical professionals sometimes cannot understand the disorder.
“This is because they lack understanding and lack of knowledge. They (doctors) should not only be aware of it, but also understand it.”
She said autistic children need support to function in the society. “They need support in the education system. They need medical support for many complications.”
She called upon all for ‘cooperation, collaboration and partnership’.
“We will work to make autistic children more functional, adaptive and productive members of the society…we want to help children. They are our future.”
She termed disabled people in Bangladesh ‘victims’ of the society. “They are the victims. When you go outside, how many disable people you see? And why you don’t see, is that they don’t exist?
“We see disable people out of the streets in many countries. They come out, go for shopping, and even use public transport. But here you will not see them in shops or outside. They are social victims.”
So the need of the hour is greater awareness. “Everyone must speak about it.”
She urged media to highlight the special kids’ achievements. Despite all challenges, one cannot even imagine how much they can achieve if they get proper attention, she says.
SOUTH ASIAN NETWORK
Saima said they had already formed a South Asian Autism Network. “It’s a high-level political and professional alliance.”
But it needs some formalities to come into action.
She said those who participated in the conference came with the full support of their respective governments.
“We have adopted Dhaka Declaration which was also unanimous,” she said, “Of course it will be a challenge to implement them all.”
“The UK has one of the best and most comprehensive support systems, but still they have challenges.”
“We are a populated country. Majority of our people are poverty-stricken. We must target them. They do not have financial resources to seek support from other countries.”
Putul said she had talked ‘personally’ with various ministers, including the health and social welfare ministers. “They are committed to work together.”
She said they have community clinics where there will be a community healthcare provider.
“What we need is to train them. They (community healthcare providers) could work as the first line of screening and also as the first line of professionals to get information.”
If they are able to tell parents what to look for soon after giving birth, it will help identify the problem right in the beginning, she said.
“We already have a good IT infrastructure. It’s a great help particularly in training.
“We cannot train all physically. We cannot even train all doctors. We must be judicious in this regard, too.”
Citing researches she said doctors do not do the necessary all the time.
“Parents and caregivers should be trained. If they are informed, they can take care of their kids constantly.”
For instances, she said, establishing eye-to-eye contact is vital for autistic children.
“They miss social queue, unless. They face problem later when social issues get complicated. During early age, it’s (eye-to-eye contact) not a problem.”
A therapist can come once a day, but that will not suffice, she said. “It’s the family members who have to take care of them.”
“We are fortunate that we have joint families and closely-knit families. So our family structure can help parents manage those kids.”
But they need to be taught, Saima says. “They are the best tools for autism. At the same time, they are also strong ‘advocates’ of the disability.”
Saima had also invited 13 USA-based international experts, who imparted post-conference training in BSMMU in the last three days (July 27 to July 29). Said she could organise more trainings, but that would have been ’sustainable.’
“They were ready to train more. They are with us. But we must build up our skills here to make it sustainable.”
She says one can take trainings online as well. Citing researches, she said both web-based training and training with physical present are equally effective.
“We have that IT infrastructure that many countries do not have. The Maldives do not have internet facilities in all of its islands. But we have even in many of our villages.”
She said there is no need of additional funding, if the existing programmes are utilised properly and creatively.
“Many of the government’s development activities are overlapping, but nothing is related to autistic kids. We need to prioritise it. We have to be creative to get ‘more bang for the bucks’.”
“We launched Global Autism Public Health (GAPH) initiative. It was an initiative by the Autism Speaks to form global partnerships and learn from one another,” Saima, also the Bangladesh envoy of research-based global organisation Autism Speaks, said.
They are launching the initiative in developing countries. “But we (Bangladesh) could make the biggest impact. We had four high-profile politicians of the region during the conference.
“I personally talked with them all. They will support us.”
Even the World Health Organisation’s director general sent their representative from the regional office, she said. “And they also vowed to support us.”
“We cannot change anything over night. We have to work slowly and effectively for ‘lasting effective change’.”
NATIONAL ADVISORY COMMITTEE
Saima Putul, also chairperson of the National Advisory Committee on Autism, says, “It’s made up of international experts apart from few Bangladeshi experts.
“It’s a small body. But there will be four task forces that will work on advocacy and awareness, education, service delivery and research.”
She went to add, “We have also discussed it during the conference. The task forces will be independent, broader and more inclusive.”
The task forces would monitor the overall activities of autism care. “They (members of the task force) are also experts. They will work on (the issue) and give feedback.”
Asked about the availability of modern appliances for autism detection and care, she said, “We (Bangladesh) have tools and appliances that need to diagnose autism and help those children in developing their communications and behavioural skills.
“We can also bring more tools if necessary. I will do what whatever I can.”
NO-NO TO POLITICS
Talking about a possible foray into politics, she said she has no intention.
“I have no interest in politics; I have no ambition to engage in politics,” said Saima, the granddaughter of Bangladesh’s founding father Bangabandhu Sheikh Mujibur Rahman.
She said, “My family is with me…a political family. So, if I can help our children in disability and families with disability using the political influence, then I am hundred percent with them (the political family).”
She encouraged everybody to ‘come forward’ and ‘reach’ her.
“Those who help me, I will also help them.”