Why is Autism considered taboo or a byproduct of supernatural forces in Pakistan?
I finally understood the truth behind the saying, “it takes a village to raise a child” when I started raising my own son. Raising a child of any age can be a whirlwind and this struggle intensifies when one is raising a child with a disability.
This year, during my trip to Pakistan, I was fortunate enough to meet a wonderful middle-class Pakistani family. On the outside, they looked like your typical Pakistani family – working father, stay-at-home mother and three beautiful school-going children. However, the inner workings of their family were far from average. Mr and Mrs Ahmed’s* youngest son, Ali*, was diagnosed with moderate Autism, and since then, the family’s journey to coping with his disorder has been nothing short of a challenge.
While autism is a tough disorder to cope with for anyone, the struggle multiplies when one resides in a country where the disorder is rarely understood by the people, let alone treated properly. Autism itself was only identified as a mental disorder in the 80s and since then, health care professionals have dedicated their lives to understanding this spectrum disorder. The National Autistic Society defines autism as a lifelong mental disorder in which the person struggles to communicate and interact with others and the world around them.
Spending time with Ali’s family made me aware of how autism affects families as a whole. More so, it made me realise how far our society and government have to go in making this a better place for people with mental disorders.
Meet the Ahmed family:
Ali was diagnosed with autism at the age of three. Being the youngest of three brothers, he was naturally pampered by his older brothers and those around him. All was well with Ali’s physical development and he seemed to be hitting his physical development milestones according to his age, that is, until he turned two. From then on, it became more and more apparent that Ali refused to make eye contact with anyone. Furthermore, he also refused any form of social interaction.
It started to become even more alarming to Ali’s parents that he never responded to his name or to any form of communication from those around him. His behaviour became repetitive and his absent-mindedness became a huge cause for concern. Above all, Ali had not begun to use any form of speech. Many parents pacified Ali’s family by telling them that they knew of children who began speaking at the age of five or even later so they did not need to worry.
However, this did not explain Ali’s lack of eye contact with others, his abrupt tantrums, his incessantly repetitive behaviour, and rapidly declining physical health. As he was growing older, his diet remained that of an infant and his refusal to even acknowledge his mother became worrying for everyone around him. Some suggested Ali might be deaf, while others suggested he might be blind. Some advised reciting Quranic verses and others recommended herbal medicines.
Desperate to see any form of improvement in their son’s behaviour, Ali’s parents applied all forms of treatments on him. His mother expressed that as he approached his third year, more and more people began to recognise that he was different but no one around him recognised that there was a mental disorder at play. Living in a highly superstitious South Asian culture, family, friends, neighbours and more began speculating that perhaps his odd behaviour was a result of supernatural forces (possession by the devil/ djinn). This speculation hurts his parents the most to this day.
The general culture in Pakistan is to believe in the power of prayer for all illnesses. Initially abiding by this norm, Ali’s parents finally gave up and decided to have him checked by a specialist. Ali’s behaviour was finally diagnosed and for his mother, it meant that whatever hope she had of her son’s behaviour being merely a “phase” had vanished. She became worried for Ali’s future. She was plagued by numerous uncertainties – what school he would go to? How would his own family treat him? How would she explain his different behaviour to others, especially as he aged? How will she herself cope with his disorder?
She feared that he would become the poster child for pity in the family. She worried that the Pakistani culture would reject his diagnosis and would insist on other explanations. Nevertheless, Ali’s parents began doing research about autism and looking into how they could get help in Pakistan. For his mother, the first priority was to find an appropriate school for Ali that would help him develop basic skills such as potty training, eating solids on his own, and more. To her surprise, she came across many schools within Lahore that catered to working with children with mental disorders. In a country like Pakistan, where class plays a major role in people’s lives, there were schools with affordability for lower middles and schools for the “elite” class.
Mrs Ahmed found that schools within the range of lower middle-class people handled autistic children as they would handle other children with mental disabilities. She saw that children suffering from other disorders, such as Down syndrome, were put in the same classes as children with autism. This was a major issue for her as each child has unique needs that are to be met with respect to their disorder. To her dismay, children in these schools were not being taught any substantial skills to survive in the outside world. They were merely at school so that they would have “a place” to be.
Ali’s parents felt that these schools would not help him grow as a person and would instead further stint his growth. Therefore, they began looking into the more expensive schools, schools that were specifically for autistic children. While these schools appeared to be the better option for Ali, they came with a hefty price. Settling on one of the better autism schools in Lahore, Ali’s mother explained that her family now barely makes ends meet.
As of now, Ali’s monthly tuition sits at Rs40,000 per month, which brings just his school tuition to an annual Rs480,000. Because of the school’s extremely high fee, and the lack of affordability by the general population, the school is inconveniently located in a posh area. Thus, Ali’s family also has to factor in transport expenses and they use a rickshaw, which costs them around Rs10,000 per week. This has also caused his parents to hold back on better education for their other two sons.
Aside from his school expenses, autism has also given Ali a very poor immune system, which means that he falls ill rather quickly, especially in the harsh weather of Pakistan. This results in expensive medical bills and frequent time-off from school in order to recover. A typical visit to the doctor can cost Ali’s parents around Rs3,000 which includes doctor fees and medicines. Beyond these expenses, his parents also have to keep up with the expensive equipment children with autism require in order to better their improvement. Equipment such as vibrating toothbrushes for oral development, weighted vests for calming or lava lamps for ease at sleeping can cost up to Rs5,000 and more.
Ali alone can cost his parents over Rs42,000 per year, excluding school fee, and with the average Pakistani earning approximately less than or equal to Rs170,000 per year, one can imagine just how difficult it can be to maintain a whole family while taking care of an autistic child. Ali’s mother further expressed that one can expect little to no help from the government when it comes to disabled or mentally ill citizens. While the Nawaz Sharif government has opened hospitals for children that offer free medical health care to disabled children, the quality of services provided and the lack of interest from staff members further stresses out parents. For example, Mrs Ahmed recalled several instances where she had to wait for over four hours to get a consult for Ali, only to be told to return another day because he was a “difficult” patient.
In a closeted culture where the unknown is not only feared but also profusely rejected, it comes as no surprise that a disorder like autism is rarely met with people’s sensitivity. Ali’s family pointed out how it is much easier for them to tell people that Ali is hyperactive or delayed in his speech than to explain his disorder to people.
On a positive note, Ali’s mother says she is happy to know that there is major scope for Ali’s improvement in terms of of potty training, speech development and basic social skills. However, school is merely not enough to follow through with these changes. She talks about other women who can afford proper treatment and are able to give their children expensive vitamins, take them to speech therapists, hire shadow teachers and buy proper equipment, and as a result, they are able to help their children more. His parent’s biggest fear is that their economic and social status will hold their son back from a better life.
At the brink of five years, Ali continues to wear diapers. Moreover, he still consumes mostly liquids, suffers from severe insomnia, and needs another person to shadow him at all times. Nevertheless, since he has begun school, he has also shown improvement and developed a small community of his own with people who understand him.
Raising a child with autism is a job of such magnitude that it can test the patience and will power of even the strongest. Raising a child with autism in a country where all odds are against you can further blow up that struggle.
Getting to know this loving and humble family left me in awe. It also made me realise the power a strong community and support system can have in helping raise a child. Just by talking to me and having her story heard, Mrs Ahmed felt more determined to change her son’s future.
Mr and Mrs Ahmed’s story is one that touches hearts all around and pushes you to be a part of that community, that support system that this family so desperately needs. It is a story that needed to be heard because it voices the same story that so many citizens in Pakistan are constantly fighting – a story that continues to be silenced because our culture is too afraid of anything against the norm.
It makes you question if our society made treatments for mental disorders and disabilities a luxury only the rich can afford. Even though the majority of Pakistan falls within the lower middle-class, it is only the rich that can access adequate health care, leaving a good portion of the population unjustly neglected.
It is absurd to think that even in today’s day and age, we choose to explain unusual behaviour by tenuous theories like the works of the devil/ djinn. In the West, it is easy to see the flaw in this argument. The truth of the matter is that people continue to believe in these explanations and so valuable lives are wasted in the name of being “possessed”.
Faulty diagnoses prescribed by haqims (local physicians that abide by religion and herbal medicines in their practice) are still trusted far more than what specialist doctors have to say. Religion can play a powerful role in helping one triumph illness, however, a whole country cannot rely on religion alone to combat disorders that clearly have treatments and require immediate action from the government and society.
If there is one thing that can be taken away from this story it is that we need to broaden our minds to the disorders that people are facing. Furthermore, we need to see how we can be a part of the change that is clearly needed in our society.
*Names have been changed to protect the identity of mentioned individuals.
The views expressed by the writer and the reader comments do not necessarily reflect the views and policies of The Express Tribune.