Changing lives

Sitting in a corner, Ateeb appears to be lost in a world of his own, unable to communicate and refusing to play outside with the other kids. He will turn five this June. Five is the age at which a child’s brain achieves maximum growth, after which almost all therapies fail.

The month of April is dedicated to acknowledge, raise awareness and educate the world about a global crisis that is autism. Autism spectrum disorder (ASD), or simply autism, is the most common neuro-developmental disorder of children. According to World Health Organisation, globally, around one in every 160 children is autistic.

Impaired imagination, communication and socialisation form the triad of telltale symptoms of ASD. Additionally, the patient may show repetitive behaviours such as hand-flapping or head-banging, hypersensitivity to noise, poor eye contact, inconsistent reaction when their name is called out – despite normal hearing – and not following objects visually, among other demeanour. Sadly, Ateeb’s conduct comprises more than just the triad.

A certain mindset dominates our society when it comes to people with disabilities. The autism stigma stretches unopposed and has made the world close its doors on Ateeb. Unwanted glances, disapproving whispers and being treated as an outcast seems to be the norm for this tender soul. All this has forced his mother, a single parent, to take on multiple roles. Besides her motherly duties, she also has to fill in the void of a father, a sibling and a friend. In essence, she has to create a whole new world for Ateeb to live in.

Moments when an autistic child incessantly spins the wheel of a toy car or has a meltdown that manifests in the form of laying stubbornly in front of an elevator, or screaming in public spaces, their caregiver is demanded by hostile onlookers to take control of the situation. People in general are not equipped with the tools to recognise this behaviour as a disease, because of its intangible nature. Hence, they do nothing but dismiss it as a case of lack of discipline or faults in the upbringing of the child.

To avoid such toxic encounters, parents of autistic children make sure their kids stay indoors, which worsens the child’s social abilities. Furthermore, in Pakistan, around 350,000 autistic children have been estimated to remain undiagnosed, either due to the impending fear of being labelled as mentally ill, or due to a lack of awareness and expertise in diagnosis. This not only delays the diagnostic but also the subsequent management process. Thus, the condition of the patient keeps spiralling down.

Educating and training parents merits precedence over all other approaches, as they not only have to face the shattering diagnosis that their child is autistic, but also have to face unfulfilled expectations from their autistic children. From dreaming that their child would grow up to be someone extraordinary to just wishing that he would somehow learn that the roads are dangerous and that running away from school is bad. This debilitating disease plunges the whole family in its unforgiving whirlpool.

The autistic population is twice at risk of developing associated diseases such as depression or anxiety, for which medications can be offered. The success of medicines and other forms of treatment, such as speech and behavioural therapy, is dependent on how tolerant or aware the community is. There is a dire need to accept autism as a disease and autistic patients in our society, only then will we be able to change the lives of those who suffer from autism spectrum.

The writer is a freelance columnist.