Mothers of autistic children face severe mental pressure

Rokshana Akhter noticed that her 18-month-old baby, Mohaimen, was not quite normal. After several check-ups at Dhaka’s Sir Salimullah Medical College Hospital (better known as Mitford Hospital), Dhaka Shishu Hospital and Bangabandhu Sheikh Mujib Medical University (BSMMU), her infant was diagnosed with Autism Spectrum Syndrome (ASD).

ASD affects a person’s social interaction, communication, interests and behaviour, according to medical science.

Rokshana’s husband left her after finding out about their son’s condition. Mohaimen is nine years old now and studies at a school for special children under BSMMU’s Institute of Paediatric Neuro-disorder and Autism (IPNA).

Rokshana takes Mohaimen to school from Bangshal every day.

While talking to this Prothom Alo correspondent, Rokshana said, not only did her her husband leave them, other family members too were not very cordial with her and her son.

Neighbours keep away from Mohaimen while many make fun of him.

Rokshana is not the only mother who has to go through such stigma on a regular basis. There are a lot of others.

A recent study revealed, one-third of the mothers of children with ASD usually face all sorts f negativity from family and neighbours.

The International Centre for Diarrhoeal Disease Research, Bangladesh (ICDDR,B) and Bangladesh government’s programme on prevention and control of non-communicable disease jointly conducted the study.

The study shows, nearly half of the mothers of children with ASD suffer from various emotional and mental problems.

“These mothers do not go to any physician for help in most cases,” said ICDDR,B’s non-communicable disease scientist Alia Nahid.

According to the national mental health survey this month, about seven per cent of the children aged from seven to 17 are suffering from autism. This number is high in urban areas and among male children.

• The mother has to pay-

There are about 100 schools for children with ASD in Dhaka. ICDDR’B conducted the study on 388 mothers of children with ASD from six of those schools. The average age of the mothers is 39. About 77 per cent of the mothers are housewives while 5 per cent are single mothers. And one per cent of them are widows.

The average age of the children during the study from May to December in 2015 was 11 years and seven months. Around 79 per cent of them were male children.  However, one of the major limitations of the study was it did not focus on the difficulties of the mothers living in rural areas.

In the study it showed 41 per cent mothers look after the autistic child alone, while 59 per cent mothers get help from maids, spouses and family members and in some cases from the neighbours.

Around one-third of the mothers claimed that the neighbours show a negative attitude towards the special children. Some of them make fun of the children while some are scared of them.

Aparna Das Gupta, a mother of 21-year-old Anindya, who has been suffering from ASD from the age of four, said, family members, relatives and neighbours always showed were negative towards her because Anindya.

“I used to sit with Anindya in his class with the permission of school authorities. But other parents objected about it and I was removed from the classroom. I can still remember, I sat on the stairs and cried that day,” said Aparna.

She said, our society is not aware of the sufferings of the autistic children.

• Mother’s health-

Director of IPNA professor Shaheen Akhtar said, every member of a family faces pressure if one child is born autistic.

“But it is the mother who suffers the most. People blame the mother for the child. The mother quits her job to raise the child. Sometimes the family breaks up,” she added.

Quoting the study she said, “A mother cannot sleep properly due to such pressure that results in affecting her health.”

About 6.7 per cent adults suffer from depression. Studies show that the rate is 45 per cent in mothers with autistic children. Nearly 60 per cent mothers reported having multiple diseases, including diabetes.

• The mother’s fear-

The study suggested that these mothers need social support. The support can come from within the family or from the school of the child. Unfortunately, there are no such programmes in our country.

The Ministry of Health and Family Welfare, Primary Education, Women and Children and Social Welfare are involved in the health and education of autistic children. The Department of Health’s non-communicable program works with these children. AHM Enayet Hossain, the line director of the programme, said, after the research, it is clear that these mothers of the children with ASD need special support.

• This report appeared in the print edition of Prothom Alo and has been rewritten in English by Farjana Liakat