Women's network in Sydney working to battle stigma against mental illness in Bangladeshi communities

Mental illness and the disabilities associated with it has long had a strong stigma in countries like Bangladesh. The pandemic only served to further highlight such problems.

This is why the majority of sufferers endure their anguish in silence. Family members try to hide their illness and seek alternative cures from shamans or religious figures.

A new group in Australia, under the banner of Sydney Women's Bangla Network (SWBN), seeks to attack this stigma and isolation prevalent in most Bangladeshi communities.

Founded by a group of mothers who have children with special needs, including autism, the group hopes to help the suffering families. It also aims to improve the family members' knowledge about accessing help.

It is especially notable in a country like Australia which has some of the fastest rising rates of autism diagnosis in the world.

This is because disability-related funding is linked to the diagnosis of autism. Currently, one in 10 children in Australia has been diagnosed with autism and availing services such as speech therapy or counselling funded by the government. Almost a third of the half a million Australians who receive disability funding qualify for the funding through autism diagnosis.

Autism is a neuro-development disorder first described 80 years ago.

It refers to those who suffer from a combination of language delay, inability to read social cues and who often have unusual or eccentric interests. They are often brilliant at highly technical matters such as computer programming but are incapable of relating to other people socially.

The definition of the diagnosis has been loosened in the past two decades, most relevant in the Western world where it is called a spectrum of problems related to socialising, language and sensory difficulties.

Meanwhile, in South Asia, the prevalence is believed to be around one in 160 people, less than a third of the rate in Western societies.

This opportunity to access government funding and help for serious mental illnesses is exposing even more the stigma in traditional communities like Bangladeshi ones.

In the mainstream population, I have patients and their families putting pressure on me to diagnose them with autism so that they can access services.

In many cases, someone is on the border, experiences a component of social problems or language delay, but not always clearly fits the entire syndrome.

The difference between the mainstream population of a Western society and my Bangladeshi patients is stark.

Instead of patients and families actively seeking a diagnosis, I receive desperate requests to help overturn the prospect of their children being called autistic.

This is despite the reality that their children will receive significant amounts of funding from the government in terms of treatment and therapies if diagnosed autistic. Sometimes they receive an extra teacher in the classroom too.

But many Bangladeshi families fear that the social stigma will drive isolation and a marked decline in social status.

At the opening programme of SWBN, there were heartfelt stories about challenges mothers experienced regarding their children. One mother, Nudrat Lohani, broke down in tears about the isolation from other families she experienced. Another related how they no longer visit relatives in Bangladesh because they fear their autistic child would not be able to cope amid the noise and sensory overload so prevalent in Bangladeshi cities, especially in Dhaka.

They also worried that the lack of services and knowledge regarding those with mental disabilities in Bangladesh would make their travels especially problematic. This has only exacerbated their sense of isolation, not just among the local community but also from their extended family in Bangladesh.

A parallel problem that has emerged is that some local Bangladeshi parents do not even seek help for their children, despite recommendations from teaching authorities. This has exposed the fact that many people within cultures like that of Bangladeshis do not always understand the importance of social skills in development.

Economies are becoming more service-oriented, making skills in communication and socialising even more important.

But I see some families where the children may perform in their studies reasonably well, but they have no friends and little interest in forming social connections.

Some parents do not notice this as a major problem, highlighting the lack of emphasis on such skills in our culture. Yet these are the skills that predict success in both career and relationships.

In fact, instead of seeking help, sometimes families try and marry off their children when adults, despite them clearly having major intellectual deficiencies.

Unfortunately, these types of cases in the Bangladeshi community are not uncommon. There have been notable cases where parents have coordinated marriages under Shariah law.

However, courts later overturned the ruling due to the autistic person being unable to give legal consent under British law. There was a highly publicised case in 2008 where Westminster Social and Community Services stepped in.

To be fair to Bangladesh, the country has made some legal strides in the realm of disability. The Disability Rights Act of 2013 for example has enshrined equal rights for those suffering a disability in line with the United Nations charter.

Non-profit groups such as Shuchona, established in 2014, have also played a role in attempting to improve awareness regarding disorders like autism and intellectual delay.

But unfortunately, cultural and social attitudes do not always follow legal rulings. The stigma against autism sufferers, as it is with all those suffering mental illness, remains high. Our tight-knit families can help give social roles and structure to those suffering such problems, in a way the Western societies do not, but it can also lead to blame against the mothers.

Groups like Sydney Women's Bangla Network are critical in improving the stigma surrounding disorder like autism and mental illness more generally.

Their work will have relevance not just in Australia, but it can also be a bridge in improving disability rights and awareness in Bangladesh.

The writer is an Australia-based psychiatrist, author of The Exotic Rissole, and founder of website www.bddiaspora.com.