By Zeenat Khan
A few nights ago, I watched a poignant and slightly heart wrenching Bengali drama on YouTube that shines a light on disorders like autism. It was the first time that I saw a drama script was written to raise awareness about autism in a developing country like Bangladesh. The 2014 drama showcases what parenting a child with special needs is really like. The drama documents one mother’s determination and resilience in trying to improve the life of her five-year-old autistic daughter.It emphasized the enormous pressure it put on the mother. Her family doesn’t understand that she is dealing with sensory overload in helping her daughter trying to learn social skills. The important point the dramaraises is how critical it is to have a good support system in placefor the parents of a child with Autism Spectrum Disorder, otherwise known as ASD. In its absence, an autistic child will not be benefited in coping with the unique aspects and demands of this disorder. Without a solid support system, the family members cannot learn to manage their feelings and emotions when they are faced with the challenges of raising a child with autism. One cannot solely rely on the support from the team of the health care professionals to teach the child as well as the parents of a child with ASD.
The TV drama was simply a manifestation of these issues that the parents and other family members face in raising an autistic child. Popular TV actress, writer and painter Bipasha Hayat played the role of a mother of a young autistic girl.In dealing with her autistic child, we see hersolitary journey, daily strugglesand frustrations in a joint family. Except for the sympathetic domestic help, she gets zero help and support from her family in raising her daughter. Seeing her family’s refusal to see the girl beyond the disorderwas painful to watch. It makes the mother more determined to give her daughtersome semblance of a normal life. The drama highlights many challenges as she tries to communicate her feelings with her daughter. The mother is constantly degraded and humiliated for having a disabled child. In the absence of proper understanding of ASD, the girl is considered mentally ill. Her presence in the family is a constant source of irritation for others. Shesomewhat becomes invisible and unimportant. The mother refuses to accept that her daughter has mental illness. It was astonishing to see how little the medical professionals know about autism. The multiple hospitals refused to treat the child when she was rushed to the emergency room after swallowing something poisonous. The mother tries her best to break the stigma in educating the doctors that her daughter’s condition is not psychological, but neurological.
Her husband refuses to help her in any level. 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 talking to his wife. In one scene, the mom takes a day off to celebrate her daughter’s birthday. The other family members get furious because of the fuss. They keep up this torment by saying all the expense is totally useless 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. From the beginning, the wife is deemed unlucky for having to have borne 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, which convinces him that he is the victim here. Unable to deal with an autistic child, he ultimately divorces his wife. I found the drama to be very moving as it embodies the pain and suffering of parents (in this instance, only one parent) of an autistic daughter. The mother’s tenacity through the whole process of having to deal with it alone, without any emotional support from her husband is not a very unusual story in a household in showing how autism affects family life.
There is no exact data available as to how many children and adults in the world suffer from Autism Spectrum Disorder. Roughly one in every 110 individual, about 1 percent of the world’s population suffers from this disorder. It is estimated that every year,1 in 160 children get diagnosed with ASD.According to a 2019 new survey done by the World Population Review, in Hong Kong,1 in 27 kids has autism. South Korea has the second highest rates of autism. The United States comes in third where 1 in 45 children has received this diagnosis. A 2017 study revealed that in India roughly 23 out of every 10,000 children are living with autism. It is estimated that in Bangladesh, one child in 500 has autism. There is no official count in approximating the adults. Many countries don’t have well established education and health services available to determine the exact number. In developed countries where regular surveys are done, many higher functioning end of the spectrum autistic individuals can fall through the cracks.
ASD is a neurodevelopmental condition that affects the brain within the first three years of birth. Then it progresses slowly over time. This lasting condition robs one from functioning in the mainstream society. The autistic children oftenare 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.
In countries like India and 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, autism in many cases is considered a mental illness.The families in both urban and rural areas who are “cursed” with an autistic child do not have much support, and access to afew facilitiesthat 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 childrenin developing countries usually are kept confined within the walls of their homes, oftentimes neglected.Without inclusion, these children withdraw deeper into themselves. However, Society can give them a chance to have a shot at a fairly normal life.
Understanding and acceptance come with social change. Let us take the case of Bangladesh. Over the last fewyears, the country has taken some bold steps in bringing this national problem intofocus. In 2010, The Center for Neurodevelopment and Autism was established. The center provides training to medical professionals, and conducts research to better help the families and patients cope with autism.There are other initiatives to incorporate autism related services in the health care system. There is a plan to make a national guideline for autism management. They are also aiming on an intense short-term training program for the physicians to learn how to diagnose Autism Spectrum Disorder. In taking all the right initiatives, Bangladesh can be on the forefront in changing the current scenario in South Asia.
The Bangladeshi mediais also frequentlypublicizing autism to promote a better understanding. Awareness is helping those families to realize that autistic children do not have to be shunned and kept hidden. Broadcasting services, especially television advertising can be very helpful in getting the message out.
In developed countries where there have been adequate research done, the children who are afflicted with autism go to state sponsored schools. There, they spend years in the clutches of a special education system. The adults with autism usually go to adult day care centers, 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 in Massachusetts. She once 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 directoryall day long. Undoubtedly, such tediousbehavior can take an enormous toll on the psyche of acaregiver.
Such is the nature of this disorder. A diagnosis of autism can also be very difficult on both the child and the parents. Day in, day out dealing with inappropriate behaviors, repeated routines and other associated rituals with the disorder can test the patience level of each family member. It becomes very challenging for the entire family as they are not trained to shoulder such a big commitment. Blaming a mother for the child’s condition does not change the situation. Everyone has to share the responsibilities as the child is here to stay and a family needs to stick together as this is a lifelong challenge.Family members usually reach out and hold each other’s hands. However, in the drama, the father abandons his responsibilitiesand takes a coward’s way out.
Although ASD has no curebut there is hope through treatment and support system. With proper treatment many children are able to learn to communicate and interact with others. Over the years, health care providers and mental health experts have learned a lot about how to break through to these children. Through therapy, an autistic child can overcome many symptoms such as poor communication skills, repeat behavior, and other physical awkwardness. For the best outcome, an earlier intervention is the best course. With access to better medical services, provided by skilled professionals, the cutting-edge autism research has finally started in someSouth East Asian countries including India and Bangladesh. The hidden potential of the autistic children canonly be explored where better facilities are available for them to live a more fulfilling, productive and happy life.