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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 or a disorder.
This year during my trip to Pakistan I was very fortunate to meet a wonderful average middle-class family, who on the outside looked like your typical Pakistani family, working dad, stay at home mom and 3 beautiful school going children.However, the inner workings of their family were far from average. Mr. and Mrs. A’s youngest son Ali was diagnosed with moderate Autism and since then the family’s journey of coping with his disorder has been nothing short of a challenge.
While autism is itself a hard disorder to cope up with, for those affected by it and those around the autistic person. The struggle multiplies when one resides in countries where the disorder is rarely even understood or recognized by the people, let alone treated properly. Autism itself was only identified as a mental disorder in the 80s’ and since then healthcare professionals have dedicated their lives to understanding this spectrum disorder.
The National Autistic Society defines autism as a life long mental disorder in which the person struggles to communicate and interact with others and the world around them. Spending time with Ali’s family this year really made me aware of how autism affects families as a whole and made me aware of how much change Pakistani society and government has to make in the way of mental disorders.
Meet the A Family:
Mr. and Mrs. A’s son Ali was diagnosed with Autism at the age of 3. Ali is the youngest of 3 brothers and so naturally was 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 until he turned 2. From then on it became more and more apparent that Ali refused eye contact or 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 behavior became repetitive and his absent mindedness became a huge cause for concern. Above all, Ali had not begun 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 5 or even later and so his delayed speech wasn’t to be worried about.
This, however, still didn’t explain Ali’s lack of eye contact with others, his abrupt tantrums, his incessantly repetitive behavior 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 suggested that reciting the verses of Quran will help, and others recommended herbal medicines.
Desperate to see any form of improvement in their son’s behavior, Ali’s parents applied all forms of treatments on him. His mother expresses that as he approached his 3rdyear, more and more people began to recognize that he was different but no one around him recognized that there was a mental disorder at play. Living in the highly superstitious South Asian culture, family, friends, neighbors, all around his mother began speculating that perhaps his odd behavior was a result of supernatural forces (i.e. possession by the devil/ jinn)- a speculation that 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 behavior was at last diagnosed and for his mother, it meant that whatever little hope she had of her son’s behavior is merely a “phase,” had vanished.
She became worried about what Ali’s future would be. What school would he go to? How his own family would treat him? How would she answer his different behavior 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 Pakistani culture would reject his diagnoses and insist on other explanations. She knew that in Pakistan people rarely accepted mental disorders as a cause for different behavior, and people’s absurd diagnoses such as possession by the devil, would continue to follow her and her son all their life.
Nevertheless, both Ali’s parents began researching on autism and all possibilities of help they could get living 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, focus etc. To her surprise, she came across many schools just 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 the affordability for the lower-middle-class families and schools for the “elite” class.
Mrs. A. 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 Downs Syndrome, were put in the same classes as children with autism. This was an issue to her as each child has unique needs that need to be met with respect to their disorder. To her dismay, children in these schools weren’t being taught any substantial skills so that they could 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 types of schools would not help Ali grow as a person and would instead freeze him in the stage of development he was currently at; forever. So they began looking into some of the more expensive schools that were specifically for autism. While these schools appeared to be the better option for Ali based on their specialization, and properly educated staff, they also came with a hefty price. Settling on one of the better autism schools in Lahore, Ali’s mother explains that her family now barely makes ends meet.
As of now, Ali’s monthly tuition sits at Rs 40,000 per month (300 GBP), which brings just his school tuition to an annual Rs 480,000 (3568 GBP). 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. What this means for Ali’s family is that they have to factor in the additional expense of transport for Ali to get to and from his school.
Since Mr. and Mrs. A do not own a car, they use the aid of the rickshaw (a popular Pakistani mode of transportation), which costs them about Rs 10,000 per week due to the long distance they cover both ways. This has also caused his parents to hold back on a better education for their other two children so that they can afford Ali’s schooling.
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 Rs 3000 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. Things such as vibrating toothbrushes for oral development, weighted vests for calming or lava lamps for ease at sleeping all can cost $50 USD and upwards, especially when these things are only available from abroad and need to be ordered from Pakistan.
Ali alone can cost his parents over $4000 dollars per year, and with the average Pakistani earning less than $5000 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 expresses that one can expect little to no help from the government when it comes to disabled or mentally ill citizens.
In a closeted culture where the unknown is not only feared but profusely rejected, it comes as no surprise that a disorder like autism is rarely met with people’s sensitivity. Ali’s family points out how it is much easier for them to tell people that Ali is hyper active or is just 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 the way of potty training, speech development, and basic social skills.
However, school is merely not enough to see these changes. She talks about other women who can afford proper treatments and is 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 move for the better in the spectrum. 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 5 years, Ali continues to wear diapers, still consumes mostly liquids, suffers from severe insomnia, and needs another person to shadow him at all times. But 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 in a country where all odds are against you can further blow up that struggle. Getting to know this loving and humble family really left me in awe at their never dying passion to give their son a surviving shot in the world. It also made me realize the power a strong community and support system can have on helping raise a child. Just by talking to me and having her story heard, Mrs. A felt even more energized and determined to change her son’s future.
Mr. and Mrs. A’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 is the voice of so many Pakistani citizens fighting with mental disorders or mental health problems but being silenced because of a culture that doesn’t accept mental disorders as real issues.
It also propels you to ask just how much we as a society do to accommodate and understand those suffering from mental disorders. It makes you question has 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 wealthy members of society who can reach out and 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 behavior by tenuous theories like the works of the devil/ jinn. While in the West it is easy to see the flaw in this argument, the truth of the matter is people continue to believe in these explanations and each day valuable and treatable lives are wasted in the name of being “possessed” or relying solely on prayer. Faulty diagnosis 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 can not rely on religion alone to combat disorders that clearly have treatments and require the 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 and hearts to the disorders that people are facing and keep a look out on how we can be a part of the change that is clearly needed in our society.
