The main thing we have achieved is a national awareness and awakening that people with autism are meant to be an integral part of society,” the Prime Minister’s daughter said at the virtual unveiling of “Pracheer Periey,” a Bengali translation of Stephen Shore’s autobiography “Beyond the Wall” and his conversation with Shore on Sunday.
Saima sits on the National Advisory Committee on Autism and Neurodevelopmental Disorders and she is also a member of the World Health Organization’s Global Mental Health Expert Advisory Group.
“We now see that the big difference is that people from different specialties, experts and parents can give their opinion, which is still not possible in many countries. We managed 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 one sector, she said. “But having the policy does not mean that things change. Having that means we have the fundamentals there.
She said the belief system had changed and people believed there should be more acceptance, support and opportunity for people with autism. “How it’s going to happen is not there, but certainly the fact that we as a country are starting to wake up and recognize it.”
“We talk a lot about the differences in culture and language, but when you talk [of] and you are in the world of autism, no matter what country you are in, whether you are on opposite ends of the world, the challenges are the same,” Saima pointed out.
“The course is the same. Suffering, stigma and prejudice – the experience of parents is the same.
Saima said she was not an autism expert because she hadn’t done any research on autism or had any specialist training, but what she did was try to learn from it. first as a psychologist because she had cases where she had trouble identifying what a child really needed, what was going on with them. “And the best training I ever received was from someone who had a loved one, who had not just professional experience but personal knowledge and personal experience.”
“And when we started in Bangladesh, the inspiration came from the families, from the parents. What struck me the most was the desperation of the parents. That there was this huge big wall, which is, you know, your [Shore’s] book is called “Beyond the Wall”.
“And how do you cross, how do you break down that barrier, that wall that just exists within society at large. It’s like a world, that a life exists outside of everyone’s life but even within their own families, sometimes even within immediate and extended families. This is what the families were faced with.
“So there is a desperate cry for help and a great lack of understanding, even among the experts. That’s what started, what pushed me, what inspired me. Because I had the opportunity to shed some light on it, to share this journey through the platforms and the opportunities I had,” Sheikh Hasina’s daughter said.
“I’m not happy at all where we come from.”
“I sometimes hear that things are changing or that there is more acceptance.”
Yet parents can’t take their child where they want to go, they can’t take them to school where they want to go, they can’t take them to all the social events and many people say something hurtful thing about their child, Saima said.
She added that she will consider it a great achievement when parents no longer need to say these things.
“The day that will happen is the day that I will say ‘yes, I think we have made a difference’.”
Shore is a professor at Adelphi University, where his research focuses on adapting best practices to the needs of people with autism.
His “Beyond the Wall” is an autobiographical account that provides detailed insight into the life of someone with Asperger’s Syndrome. Shore recounts her personal and professional experiences in a simple and open way, creating informative and friendly text that sheds new light on the trials and tribulations of people with Asperger’s Syndrome.
Shore not only gives his personal perspective in this book, but also writes about family events and backgrounds, while connecting his own experiences to recent research, making it of equal interest to individuals and professionals.
He said he planned to write another book about his experience with autism in the 52 countries he had been to, and another about helping people with autism.