A Tale of a Woman with Autism Spectrum Disorder
By Fatema Akter Bonny and Amina Amin
Nishat (pseudonym) is a 29 years old woman with autism spectrum disorder (ASD). According to her mother, she had epilepsy since the age of one which affected her physical growth and cognitive ability. [Epilepsy is a condition in which a person gets recurrent seizures due to abnormal discharge of the brain’s nerve cells causing temporary disturbance of motor, sensory, or mental function. Locally known as ‘mrigi rog’.] Her father is a local political leader in their hometown and her mother works as a school teacher. Her mother blames herself for her daughter’s condition —
“My daughter was born just perfect like my other two kids. However, after her birth I couldn’t take care of her because of my job and she became sick. If I could look after her the whole time, then she might grow up normal like her siblings. When she fell sick, she required constant care, but I couldn’t give her that. That time we didn’t have much money so I had to continue my job to support our family.”
Though she has been diagnosed with epilepsy during childhood, her family got to know about her ASD at the age of 22, when the nationwide disability detection survey was conducted in 2013 by the Department of Social Services of Bangladesh Government. When they came to know that Nishat had ASD, they were not astonished. Rather they were stoic. Nishat’s mother said,
“No matter what condition she has. What could be done? I still have to manage her my way. We have money, so we have managed to bring her this far. Just imagine how a poor family handles these children!”
Raising Nishat was a struggling journey for her family. She couldn’t remember playing like other kids during her childhood. Her parents were busy taking her to various doctors and hospitals. She has one brother and one sister who are perceived as normal and well-established. In comparison, she had always been considered as worthless to her family. Her mother thinks that she had cost endless misery to her family. She never had a normal childhood. Her brother and sister mostly ignored her existence, even though she loved them a lot. She said,
“I am sick, I don’t understand much. My siblings are very smart. My brother works with a computer. He stays in a locked room all day. He doesn’t talk with me. My sister comes with her husband. Her husband is very wealthy. My sister doesn’t look like me. I have dark skin and curly hair but she is very beautiful and stylish. They often come but don’t interact much.”
Her transition from childhood to adulthood happened with clear denial of self-determination, decision-making and independent living.
Due to her sickness, it was also difficult for her to concentrate on her studies and her teachers often took that as mischief and gave her punishment. She said, “I struggled a lot to memorize my lessons. Because of that my teachers used to scold me a lot. Sometimes they even beat me with a stick.” Her classmates often ignored her and didn’t want to talk to her. She used to be bullied for her stammering, strabismus eyes and short temper. Most of her classmates didn’t want her as a friend. Thus, she faced difficulties keeping pace with the mainstream schooling system. After Nishat failed to pass grade six, she completely stopped going to school. Her parents then decided that she would continue studying at home and enter exams as a private candidate.
Before she could complete her secondary school certificate exam her parents decided to marry her off. Her mother said, “Since the groom’s family showed interest in my daughter and approached us, we married her off.” Her husband works in a garment factory. Though the marriage was arranged by her family, they were not satisfied. Because extending a relationship with a poor family was considered to be shameful for a wealthy and reputed family like theirs. Yet they accepted it because Nishat was perceived less desirable considering her disability. According to her mother,
“My daughter has some problems, we would never find a good guy for her that will match our status. We know that they proposed because they thought if their son marries our daughter, they can get rid of the legal problems (the grooms family had some land related legal cases), as my husband is very influential (Local Leader).”
That’s how Nishat got married at the age of 19 years, when she couldn’t even find the purpose of getting married. None bothered to consult the major decisions of her life like the sudden discontinuation of her education or marriage. She, herself doesn’t think that her opinion is worthy of consideration. She said, “I am a sick person. I didn’t have any opinion on my marriage or anything. My parents thought it would be good for me so they did.”
She neither got the chance to express her wishes nor took any life decisions ever. She has always been treated in a way that she is not capable of taking any decisions. Resemblance of this was found in her conjugal life too. After marriage Nishat came to know that her husband did not marry her willingly rather under her in laws pressure. She found out that he had an affair that he continued even after marriage, but she couldn’t confront her husband. She gave birth to her only son 3 years after her marriage. While she was pregnant with her son, her parents took care of her completely, they always took her for checkup and took extra precautions so that she couldn’t get any seizure. Her husband was never there to give her company even. Most of the time her husband stays away from her by using work as an excuse. He only comes to see his son whenever he feels like it. Nishat said, “He comes and goes as per his mood. The time he stays here he doesn’t talk to me that much. Sometimes he takes our son outside but he never takes me. If I want to go somewhere with him, he says he won’t go if I go with him. So, I stopped asking him.”
Nishat had to go through abortion thrice as her husband lacked care for her and paid no attention to her plea to use contraceptive. So, her mother had to intervene and forced her son-in-law to use contraceptives. Nishat’s mother said, “It is a matter of shame that I had to intervene and forced my son-in-law to use a contraceptive method. But I couldn’t help as my daughter’s health was concerned. Being a mother of a special child is a curse. I wish nobody would get such a life. Once we die nobody will look after her. Not even her siblings. When his son will grow up, he might look after her.”
This is the story of Nishat, a person with ASD. We came to know about her while conducting a nationwide research on sexual and reproductive health and rights of the persons with disabilities. When we called Nishat for the first time she was very excited. In fact, she kept calling us to navigate towards her home. After meeting her, we discovered that she is a classy, well-groomed woman. Looking at her appearance, we couldn’t realize that she has any disability. During the introduction, she talked very confidently. We found her taking care of his son and assisting in household chores. She also helps her mother in teaching at home. She was just like any graceful woman who is careful about her home and family. She mostly prefers to share positive information about herself. She also seemed proud of her siblings who are established and wealthy. But Nishat becomes a broken soul when her family only talks about her weaknesses denying all the efforts that she puts in to be a better person.
Though we say “ability not disability” but in reality, it has no reflection on persons with disabilities’ lives like Nishat. Her capabilities were overlooked over her incapability. She is ignored since her childhood because she was perceived as stupid, ugly and dependent. Instead of recognizing her graceful personality and appreciating her skills, the individual’s family and society often disapproved of her attempts to do better. So, she remained captive as per others’ wish. Especially persons with ASD like her, lack social acceptance regardless of their capabilities and socio-economic status. In fact, their authority, ability to make decisions, and expression of their own feelings is shaped in a way that they hardly believe in themselves.
The government of Bangladesh has taken praiseworthy initiatives to ensure the rights of persons with disabilities. However, government initiatives cannot stand alone as long as society and families deny the need to practice the rights of the persons with disabilities to ensure education, empowerment, self-determination, decision-making and independent living. Therefore, sustained and accelerated initiatives need to be continued to encourage social and family support for the betterment of persons with disabilities.
The case story has been taken from the nationwide study of the Sexual and Reproductive Health and Rights (SRHR) of Persons with Disabilities (PWDs); undertaken by CGSRHR, Brac James P Grant School of Public Health; funded by the Embassy of the Royal Kingdom of Netherlands.
Fatema Akter Bonny, Research Associate, BRAC James P Grant School of Public Health, BRAC University
Amina Amin, Research Assistant, BRAC James P Grant School of Public Health.
