The Other Side of the Spectrum
Can changing the child's name cure autism? Well, Tahmina Tania, from Chittagong was told by a group of religious clerics that changing her son's name and holding special prayers would cure him of his disease. In fact, they were so certain about this that they suggested that she pay them a fee when her son was cured.
Tania was not convinced. "Too often people have tried to influence me to see a kobiraj because they genuinely believed that my son Afip has been possessed by a ghost or a jinn or whatever”, she says.
It is hard to believe that even in the 21st century, there are many people, especially in the rural areas, who think that autism is caused by satanic possession.
Shamsur Nahar does not visit the village anymore with her daughter, Shraboni. The villagers had labeled Shraboni as "mad”. "It is not their fault", she says, "Lack of education is at fault here."
But even in big cities the lack of awareness regarding autism or any other mental disability for that matter, is appalling. Quacks known as kobiraj often make claims of knowing how to cure autism by holding special prayers or performing horrific exorcising rituals in exchange of a handsome sum of money. Some people have made a business out of torturing these children.
Shraboni is a student of Beautiful Mind, a school for the mentally challenged in sector 5, Uttara. Established in 2004, the school has been devoted to children with special needs. The founder chairperson of the school, Dr Shamim Matin Chowdhury is a renowned child and adolescence psychiatrist and an autism specialist. The teachers receive on–the–job training once a week, and are often sent to the Institute of Education and Research at Dhaka University to complete a Bachelor of Special Education and Masters of Special Education training courses. The school provides occupational therapy, speech therapy, etc for its students and gives much importance to dance and sports classes, where the children are seen to truly enjoy themselves. All the classrooms are monitored closely by CCTV cameras.
The faculty members of the school emphasise on understanding autism. “Autism is a neuro-development disorder, it is not a disease. It cannot be cured but the situation can improve when proper care is taken of the children”, explains Momtaz Sultana, the vice principal. “Autism is not anybody's fault. The children have done nothing to deserve it.”
Significant progress has not been made in understanding autism even in today's society. People's narrow perspectives are constantly being reflected in their actions. Children often fall victim to snide remarks and unwanted attention. This not only creates frustration and depression amongst the parents but also hampers the child's ability to improve his condition. Nakib's mother, Naznin Islam says, “Not only do strangers glare at my son, but even family friends feel uncomfortable around him. He is just an innocent child, why do they not understand that?”
Eklima Akther, a teacher in Beautiful Mind, has noticed that many children from well to do families have been subject to neglect as well. "The children are forced to spend all their time with the maids as the parents give up and focus their time and energy elsewhere", she states.
Shadman Shakib Rahman realises that it's all about perspective when dealing with autistic children. “If I take my sister Lamia to be different, then obviously it would be very hard for me. I just try to look at things through her eyes, and that helps me understand her better.”
Shamsur Nahar understands the importance of treating all her children the same. "I have always wanted to bring up Shraboni, like the way I brought up my older children. The struggle is always the same."
Children with autism are often physically abused by their parents. Rudro (not his real name) has red marks on his hand, and often has outbursts in class, claiming his father hits him. When questioned about such problems, Khursheda Khanam, faculty member, Beautiful Mind, talks about the various steps the school takes to ensure the children have a safe and comfortable environment at home. “We organise counselling programmes at the school to educate parents about such issues. It is understandable that it may get frustrating for the parents sometimes but taking that out on the children won't help the situation. We urge the parents to maintain a close relationship with their children and we are always encouraging activities for them to do at home. However, there is only so much we can do. Regardless of what we say, if some parents still choose to be abusive, then that is just depressing”, she states while feeding one of her students during lunch.
“Our society is in a fifty-fifty situation. There are two types of people, I think”, Tahmina philosophises. “Upon seeing my son, some people genuinely want to know him and spend time with him. Then, there are those who used to be close to me before the birth of my son, but now they maintain a certain distance with our family. They do not want to associate with my autistic son.”
Anika Tabassum, who is doing an internship as a teacher at the school recalls her first days on the job. "At first, I was a bit apprehensive but it did not take too long for me to understand them and their temperament, and now, they seem just like any other children we are usually surrounded with. And I feel so lucky to be able to spend time with these beautiful human beings."
"Working at Beautiful Mind has taught me to be patient on a whole new level”, says Jinia, another intern working at the school, “one of the students took three years to make any visible progress. This has inspired me a great deal. I want to create awareness on autism in not only Bangladesh, but rather the whole world".
Eklima Akhter says she spends half of her day with her students at the school, and even as she goes home, she tries to keep in touch with them and their parents by phone. She is so fond of these children, she cannot imagine being away from them.
Sultana salutes the goverment's many efforts in giving equal rights to the autistic. "Several laws have been passed recently such as giving the autistic children inheritance rights. Thereby, now these children are given the same rights as any other citizens", she states. However, she thinks there are milestones yet to be reached. "A decade ago, the awareness and knowledge amongst people about autism was extremely poor. Even today, the awareness has not increased in mass. I would say approximately two percent awareness has taken place so far. There is still a long way to go", she states.
Laws by themselves cannot change people's mentality. They cannot change the wrong perceptions people have about autism. Quacks who associate mental disorders with satanic possession or other supernatural causes have to be punished and their practices banned. Autism in rural areas is often not even diagnosed. Funding for schools providing special education is scarce. Often, most families are unable to afford the high fees. Many parents complain that there are not enough government grants and there are not enough government owned special education institutions. Moreover, there are very few campaigns to educate the general public about autism that reach the most remote areas of Bangladesh.
Acceptance is the first step towards ensuring the rights of individuals with autism in schools, workplaces and the at large society. Once we accept them as equal citizens of the country with the same rights as anyone else, we should take steps to make sure that they lead happy, healthy, productive lives.