There are some disorders in society for which none could be blamed. Autism is such a disorder. Mothers of the autistic children have to suffer the most and their suffering and pain never end. Such an incident happened in the life of Saleha Aktar (not real name). Saleha married Sumon (not real name) after love. However, none of the two families accepted the marriage first. After three years of the marriage, both the families accepted them when their first child Rehan was born. And then, the life of the couple was going through happiness. When Rehan was 18-month-old, Saleha came to know that her son is not a normal child. After visiting the capital’s Sir Salimullah Mitford Hospital, Dhaka Children Hospital and Bangabandhu Sheikh Mujib Medical University (BSMMU) Hospital, she was informed that her son was autistic. Saleha’s husband abandoned her when he came to know it and then she (Saleha) was forced to leave her father-in-law’s house.
Saleha fell into a huge trouble with her autistic child, and in this way she passed eight years. The nine and a half years old Rehan is now studying at the autistic school of BSMMU Institute of Paediatric Neurodisorder and Autism (IPNA). Saleha takes her child to the school five days in a week from her Tikatuli residence and returns home after closing of the school by a rickshaw.
When this reporter talked to Saleha at the IPNA, she informed that not only her husband left her, other members of the family also behaved badly with her. The neighbors avoid her son, and many joke and ridicule him. It not happened only in Saleha’s family, a joint research conducted by International Centre for Diarrhoeal Disease Research, Bangladesh (icddr,b) and the government’s Communicable Diseases Control Programme, shows that the mothers of one-third autistic children get negative behaviour from the family and neighbours.
According to the research, almost half of the mothers of the autistic children suffer from mental disorders. Scientist and head researcher of the icddr,b’s Communicable Disease Wing Alia Nahid said it’s the most regrettable matter that though many mothers of the autistic children suffer from physical and mental disorders, they don’t go to doctors or cannot go. According to medical scientists, autism is a neurodevelopmental disorder. Due to this problem the children cannot communicate and develop social relationships. They do the same work or behaviour time and again. The national mental health survey published recently shows that nearly seven percent of children aged between seven and 17 are autistic. This disorder is noticed more in urban than rural areas and the number is higher among the boys than the girl children.
There are nearly 100 specialised schools for autistic children in Dhaka city. The icddr,b has conducted a research on mothers of 388 children of six specialised schools. The average age of those mothers is 39, and 77 percent of them do not work anywhere except home.
Five percent of these mothers were abandoned by husbands, while two percent are widows. The average age of the children was 11 years and seven months when the survey was conducted from May to December in 2015. However, the main limitation of the research was it didn’t highlight the problems of the rural mothers.
The research shows that 41 percent mothers lonely look after their autistic children, while domestic helps, husbands, other children and members of the family and in some cases neighbours help 59 percent mothers. One-third of the mothers alleged that the neighbours show negative attitude towards the autistic children. Many call them mad, while many are scared by seeing such children.
Aparna Das Gupta resides in the capital’s Green Road. Her 21-year-old son Anindya’s autism was detected when he was four. After her son’s identification of autism, Aparna Das was harassed by her family members, close relatives and the neighbours.
Wiping out tears, she said with a smiley face: “I used to sit beside my son at the classroom after taking permission of the school authorities. There was no objection from other children. But after a few months I was ousted from the classroom due to objections from other guardians.” Aparna Das continued: “The society is still not aware like the realisation of the problems of autistic children.”
IPNA Director Professor Shaheen Akhtar said all of the family feel pressure if their any child is autistic. The society blames the mother for giving birth to an autistic child. The mother leaves her job to take care of her child, while the family of many people breaks for such a problem. The mother clings to her child, but she cannot sleep adequately as she has to face huge pressure. As a result, the mother suffers from various physical disorders.
Usually, 6.7 percent of adults suffer from depression. But the research shows that the rate is 45 percent among the mothers of autistic children. Sixty percent of mothers said they are suffering from various diseases including diabetes. The conclusion of the research said these mothers need social support.
This support could be extended at home or the school of the children. However, there is no such a programme for the mothers while the health and family welfare ministry, the primary and mass education ministry, the women and children affairs ministry and the social welfare ministry are involved in the health and education of the autistic children.
Line Director of the programme HM Enayet Hossain said the research clearly shows that separate support is required for such mothers. Saleha said she needs support badly. She said when her husband left her she started boutique work after going to her mother’s family. “I cannot do my work smoothly as I can’t go anywhere leaving my son alone. Besides, I can’t take my son to a physiotherapist and manage a teacher for him,” she said.
“Besides, I’m struggling to manage the house rent and fare of a rickshaw … there is nothing anywhere for the mothers like us,” Saleha lamented leaving a long breath.
