The struggles of a mother raising an autistic child in a developing country
Since the birth of her only child, Khushboo, life has been different for Monowara Begum (35 years old). Being a mother is a full time commitment and needless to say, every mother changes her lifestyle to cope with this new entitlement called “motherhood.”
But this particular job has been more difficult for mothers like Monowara Begum, whose children are denied social inclusion because of their mental or physical conditions. On top of that, mothers who bring up children with disabilities living in developing countries like Bangladesh are unsung heroes whose stories deserve to be heard. According to WHO, the correct estimation of people with mental illnesses in Bangladesh is around 8.4 million, which is almost 7% of the total population.
People living here are mostly unaware of mental health and in rural areas, mental disorders are thought to be connected with paranormal and supernatural activities which require other measures to be cured of than medication (International Meeting for Autism Research, 2014).
A study by the National Institute of Mental Health indicated that 50% rural people taking part in that study showed faith in traditional healers (NIMH- ASD, 2018). Because of their lack of knowledge of mental health, they take the patients to a local shaman who gives questionable treatment to the patients, such as beating them with a broom or a stick or filling a room with smoke and locking the patient in that room.
Occurrence of sexual harassment by such shamans is common for teen girls in underprivileged rural areas of Bangladesh. The story of Monowara Begum started from a typical village like this.
It is always the woman’s fault
Like common rural girls, Monowara too was married off at an early age. The first few years of marriage were tough for her as she could not bear any children. In Bangladesh, it is popularly believed that only women are to be blamed for infertility. Female children are still highly unwanted by most families, including the urban ones as well.
And again, the finger is pointed at the mother, the wife, for carrying a girl in her womb. Misconceptions and prejudices about the basic genetics are so widely popular that even young educated civilians also go with the flow. So when Monowara finally gave birth to a girl after seven years of marriage, everyone in the family was still disappointed in her.
Around the second birthday of her daughter, Khushboo, Monowara decided to take her daughter to a doctor as Khushboo could not speak two word phrases even after two years. Except for this, Monowara saw that her daughter would not pay attention to the things Monowara used to do to play with her.
She would not respond to anyone or anything happening around her. Nobody else in the family was as attentive as Monowara regarding the issues of Khushboo, hence it was really challenging for her to convince her husband to take their daughter to a pediatrician.
Khushboo was taken to three different pediatricians before she was recommended to be taken to a child neurologist in Dhaka. Monowara was living in a village, far away from the big city. Going to Dhaka for Khushboo’s treatment was to be expensive, hence, it took six more months to finally arrange enough money for Khushboo’s treatment.
Monowara used to make dresses for women in the locality and saved that money for going to Dhaka. But their journey was still unsure as Monowara failed to convince her husband to treat their daughter even with her savings. She went to the extent of fasting for three days and nights, yet her husband remained unchanged in his decision. All the hopes for a better future for Khushboo seemed to be lost.
No less than a hero
Monowara however was fully determined in her purpose and was bold enough to bear the consequences of her actions. Hence, after failing to convince her husband, she left a letter for him at home and went to the bus stop, taking Khushboo with her. After receiving that letter, he rushed to the bus stop and finally he accompanied them.
Monowara was not only leaving her village, highways, big trees, and long lanes of crop fields behind her, but also the prejudices, the misconceptions, the injustice that were happening to her daughter. That day, she cried silently on that bus as it was moving forward and taking her to her destination. Khushboo was fast asleep in her lap; the innocence and the peacefulness of that sleeping face was what Monowara wanted to protect at any cost.
Life took an unexpected turn when the child neurologist finally broke it to them about what was really wrong with Khushboo. Her daughter was diagnosed with Autism Spectrum Disorder (ASD); something Monowara never heard of. In Bangladesh, there has been no research carried out to determine the exact cases of ASD, but it is assumed that around 3,00,000 children are affected (Autistic Children’s Welfare Foundation, Bangladesh, 2011).
A pilot study in 2013 which involved community health workers revealed that the prevalence of all kinds of neurodevelopment disability in Bangladesh is 7.1%. For autism, the study shows a prevalence of 0.15% (3% in Dhaka City and 0.07% in the rural side).
It was challenging for the doctor to properly make them understand that their daughter was not “insane.” At first, both the parents declined to believe the doctor. Khushboo’s father hurried them back to the village but Monowara continued to go from one doctor to another and cross-checked the evaluation of the previous child neurologist. The diagnosis proved to be true.
Guilt and shame
The first feeling that she claims to experience was guilt and shame because, no matter how hard she tried to fight social prejudices, it was still inbuilt in her, in most of the rural women of Bangladesh. She held herself responsible for her daughter’s illness.
This is a common response from mothers with autistic children worldwide. The journey of motherhood takes a completely different turn after the diagnosis of their children. They have greater involvement in raising their children, greater possibilities to be exposed to the negative social reactions, and greater chances of leaving their jobs.
These mothers reported that their children required much more attention and supervision than typically developed children (American Journal of Occupational Therapy, 2015).
Studies about the mental condition of mothers with autistic children revealed that these mothers tended to suffer from depression more than mothers with typically developed children. [26% among mothers of autistic kids in Thailand (Weiss, 2002), 26.7% in Brazil (Machado Junior at el, 2016), 44% in Oman (Gilson et al, 2018) etc]
A recent study about the struggles of mothers with ASD kids in Bangladesh showed consistent results with the previously stated research. The depression rate among mothers with ASD kids was much higher (44.6%) than that of mothers with typical children (8.5% only). The suicidal thoughts and behaviours prevailed at a much higher rate for these mothers in comparison with typical mothers. (Asian Journal of psychiatry, June 2020)
After realizing that Autism Spectrum Disorder is something that cannot be cured totally, and can only be minimized to a certain extent, Khushboo’s father decided to go back to their village. Monowara knew that there was no special school targeted for ASD children back at the village and that Khushboo’s treatment will come to an end if they leave Dhaka.
She refused to leave the city with her daughter even when her husband threatened to divorce her. Eventually, her husband had to accept defeat and they made the decision to move to Dhaka permanently. Both of them started working, as the living expenses in the city were more than double compared to the village.
A new beginning
Monowara started sewing dresses at cheaper rates and soon, she was famous in the locality for quality production. Khushboo was admitted to a special school and her regular treatment finally started. And surprisingly, day by day, her husband became more understanding and gradually he could build a wonderful father-daughter relationship with Khushboo, the relationship that was missing all these years.
The school worked like magic for this little family. After meeting with other mothers with autistic children and finding similarities among their situations, Monowara made a great emotional bond with them. For the first time in her life, she could feel the essence of friendship, compassion, and humanity around her.
The social exclusion from others, peer pressures, and social stigmatization could not weaken her mental stability and resolve as they did before.
Now she knew that she had others with her; a community of their own. Another important coping mechanism was when she started praying five times a day, she felt more relaxed and possessed a positive attitude towards life.
Khushboo was still hyperactive and faced problems during social interactions; yet her situation improved gradually.
There was hope for a better future, a future where she would not have to be beaten repeatedly by some local shaman. At school, Khushboo found genuine interest in drawing and painting. Now she is always busy with colours, filling the walls of her room with her drawings of butterflies.
Monowara has set up a shop for sewing dresses of local women at a reasonable price. I got to know her through my mother as she took me to Monowara’s shop to make a dress for me. There I saw Khushboo, a little angel playing with colours in her own world, unaware of her surroundings.
I looked at her with awe in my eyes and perhaps that made Monowara come and talk to me. After she learned that I was a freelance writer, she opened up to me. While telling me the story of her life, there were moments when her eyes welled up with tears, moments when there was utter disgust on her face, moments when she beamed like sunshine.
I wish I could capture her emotions through my writing. I wish she, herself, could write it for Khushboo. But I know for sure, one day Monowara will make Khushboo capable of writing her own story.
Sanjida Alam Ria is a graduate student of economics, University of Dhaka.