Why is Autism considered taboo or a byproduct of supernatural forces in Pakistan?


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



Date:21-Sep-2017 Reference:View Original Link