Bangladesh has national awareness on autism, but things are not changing: Saima Wazed

Bangladesh has achieved a national awareness about autism and the government has a strategic plan to deal with the issue, but things are not just changing yet, Saima Wazed Hossain has said.

The core things that we have achieved is a national awareness and awakening to the fact that the persons on the autism spectrum are supposed to be part and parcel of society,” the prime minister’s daughter said at the virtual unveiling of “Pracheer Periey”, a Bangla translation of Stephen Shore’s autobiography “Beyond the Wall” and her conversation with Shore on Sunday.

Saima sits on the National Advisory Committee for Autism and Neurodevelopmental Disorders and she is also a member of World Health Organization’s global Expert Advisory Panel on Mental Health.

“Now we see the big difference is where there’s people from different specialities, experts and parents can give input, which is still impossible in many countries. We’ve been able to break down many barriers that were preventing this conversation from happening,” she said.

The government has a strategic plan that is not limited to just one sector, she said. “But having the policy doesn’t mean things are changing. Having that means we have the foundational pieces there.”

She said the belief system has changed and people believe there should be more acceptance, assistance and opportunities for persons with autism. “How it’s going to get done is not there, but certainly the fact that we, as a country, are beginning to wake up and recognise that.”

“We talk a lot about having differences in culture and language, but when you speak [of] and you’re in the world of autism, it doesn’t matter which country you are, whether you are in two ends of the world, the challenges are the same,” Saima pointed out.

“The journey is the same. The suffering and the stigma and the prejudice - the parents’ experience is the same.”

Saima said she is not an expert on autism as she did not do any research on autism or have specialised training, but what she did was to attempt to learn about it first as a psychologist because she had cases where she struggled to identify what a child really needed, what was going on with them. “And the best trainings that I ever received were those provided by somebody who had a loved one, who had not just a professional experience but a personal knowledge and personal experience.”

“And when we started in Bangladesh, the inspiration came from families, from parents. What struck me the most was the hopelessness that parents had. That there was this tremendous big wall, which is you know, your [Shore’s] book is called ‘Beyond the Wall’.”

“And how do you cross, how do you either break down that barrier, that wall that just exists within just the larger society. It’s like a world, that a life exists outside everybody else’s life but even within their own families, within even sometimes immediate and extended families. That’s what families were facing.

“So, there’s a desperate cry for help and a big lack of understanding even among experts. This is what actually started, that drove me, what inspired me. Because I had the opportunity to shine a light on this, to share that journey because of the platforms and opportunities I had,” said the daughter of Sheikh Hasina.

“I’m not all satisfied where we’ve come.”

“I hear sometimes that things are changing or that there is greater acceptance."

Still, parents cannot take their child wherever they want to go, they cannot take them to wherever school they want to go to, they cannot take them to all social events and there are many who say something hurtful about their child, Saima said.

She added that she will consider it a big achievement when the parents do not need to say these things anymore.

“The day that happens is the day I will say ‘yeah, I think we’ve made a difference.’.”

Shore is a professor at Adelphi University where his research focuses on matching best practice to the needs of people with autism.

His “Beyond the Wall” is an autobiographical account that gives a detailed insight into the life of someone with Asperger Syndrome. Shore relates his personal and professional experiences in a simple and open manner, creating an informative, user-friendly text that sheds new light on the trials and tribulations of those with Asperger Syndrome.

Shore does not only give his personal view within this book, but also writes about family events and background, whilst connecting his own experiences to recent research, making it of equal interest to both individuals and professionals.

He said he was planning to write another book on his experience about autism in 52 countries he had travelled to, and another on assisting the people with autism.