Autism: No cure but hope

There is no exact data available as to how many children and adults in Bangladesh suffer from Autism Spectrum Disorder. Otherwise known as ASD, it is a neurodevelopmental condition that affects the brain within the first three years of birth. Then it progresses slowly over time. It is estimated that one child in 500 in Bangladesh has autism. This lifelong condition robs one from functioning in the mainstream society. The autistic children often are highly intelligent, but are not emotionally equipped to form normal human relationships with others. They are unable to make decisions for themselves, which prevent them from performing their mundane tasks of everyday activities, like dressing, and feeding themselves.

Sadly, autism is not only restricted to Bangladesh, it is a global epidemic. Roughly, one in every 110 individual, about 1% of the world's population suffers from ASD. In developing countries like Bangladesh, without much awareness and understanding of the disorder, it has been very difficult to accept a child with autism. In the absence of adequate knowledge of the disorder, autism is simply considered a mental illness. The families who are "cursed" with an autistic child do not have much support, and access to a few facilities that exist today.

Because of the stigma attached to mental or any other developmental conditions, the families of autistic children do not want to explore where to turn for help or seek treatment. They often feel blessed if they can have a full night's sleep, or a tantrum free day. The autistic children usually are kept confined within the walls of their homes, often times neglected and forgotten. Without inclusion, these children withdraw deeper into themselves.

Understanding and acceptance come with social change, and Bangladesh is headed in that direction. Over the years, the country has taken some bold steps in bringing this national problem to the forefront. In 2010, in collaboration with Sheikh Mujib Medical University, The Centre for Neurodevelopment and Autism was established. The Centre provides training to medical professionals, and conducts research to better help the families and patients cope with autism.

The Bangladeshi media also is frequently publicising autism to promote a better understanding. In doing so, it is helping those who are inflicted with this problem, so that they are not shunned and kept hidden. Broadcasting services, especially television advertising can be very powerful in helping to get the message across the conventional society. A few weeks ago, I saw parts of a Bangla natok on YouTube starring popular TV actress Bipasha Hayat, in a role of a mother of a young autistic girl.

It portrays her daily struggle and frustration with her autistic daughter, and her family's zero support in raising her daughter, (except the sympathetic domestic help,) which makes her even more determined to give her child some semblance of a normal life. She is constantly degraded and humiliated for having this child, and the girl is called a "pagol." The mother refuses to accept that her daughter has mental illness, and tries her best to break the stigma and to educate others that her condition is not psychological, but neurological.

Her husband refuses to help her in any level, as he is clueless about his daughter's condition, and cannot deal with her meltdowns. The child is super sensitive, and can sense her father's disapproval, and refuses to warm up to him. The unsympathetic dad often refers to her as "your daughter," when he speaks to his wife. The mum works outside of the home and in one scene, takes a day off to celebrate her daughter's birthday. The other family members get furious because of the fuss, and keep tormenting the mum by saying all the expense is a waste since the girl has no concept of what a birthday is.

We see the teary eyed mother as she tries to light the candles on a birthday cake, and the daughter's inability to understand the significance of candle blowing ritual is very painful to watch. The mother's tenacity through the whole process of doing it alone, without any emotional support from her husband is not a very uncommon story in a household of an autistic child.

The story then takes a different twist where the husband gets involved in an extramarital affair as a form of refuge. He gives into his own elderly mother's evil plot, by deciding to divorce his wife. From the beginning, the wife is deemed unlucky for having to have borne an autistic child, who stood in the way of her father enjoying a blissful family life. The video goes blank as the child's mother signs the divorce papers. I found the video clip to be very moving as it embodies the pain and suffering of parents (in this instance only one parent) of an autistic child.

In the 1988 film "Rain Man," Dustin Hoffman played the sensational role of Raymond Babbit, a "high level" autistic adult, who lived in a mental institution in Cincinnati, Ohio. His genius was so out of the ordinary that he could calculate the square roots with his eyes closed, and could count the toothpicks that spilled from a box in mere seconds. Raymond lingers in our memory because of his genius and yet simplistic nature.

Such unusual gift naturally scares people away, as they do not know how to interact with an autistic individual. Consequently, the real life Raymonds continue to live in a culture of shame protected by a handful of family members, unseen and tucked away from the public view. By recognition and acceptance of individuals like Raymond, and the young girl in the Bangla natok, society can give them a chance to have a shot at a fairly normal life.

In developed countries where there have been adequate research done, the children who are afflicted with this lifelong situation go to state sponsored schools, where they spend years in the clutches of a special education system. The adults with autism usually go to adult day care centres, where they are cared for by trained professionals. Most autistic children behave in ways that are repetitive, and have odd fixations. A friend of mine is a teacher for special needs children in a public school. Once she told me about an autistic boy she had taught. He used to spend most of his days turning the pages of a 500 page phone directory all day long. Such tedious behaviour can take an enormous toll on the psyche of a caregiver, and family members.

As the Chair of the National Advisory Committee on autism in Bangladesh, Saima Wazed Hossain Putul, a child psychologist (daughter of PM Sheikh Hasina, ) has been campaigning in a global level to raise awareness, and had successfully pushed a resolution to WHO (World Health Organization) in Geneva. It has been widely reported that on May 23, WHO passed a Bangladesh-pushed resolution on autism, at the 67^th World Health Assembly in Geneva. According to Health and Family Welfare Minister Mohammad Nasim, this resolution will ensure and enable "comprehensive and coordinated efforts," in dealing with autism in Bangladesh.

Putul in her pitch to WHO outlined policies that ought to be implemented to give the families and the autistic children the much needed help they deserve. In the proposal, she suggested "a holistic approach," that would give "access to medical, educational, and employment opportunities throughout their entire life." The resolution has passed with all members signing in favour, and hopefully the autistic children in Bangladesh will soon have access to better medical services, provided by skilled professionals. The cutting-edge autism research can finally start now with full force in Bangladesh, so that the hidden potential of the autistic children can be explored. This is news worth rejoicing.

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Zeenat Khan writes from Maryland, USA.