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No diagnosis will define him

  • Published at 11:01 pm April 4th, 2019
Children with autism need special education
Children with autism need special education BIGSTOCK

Raising a child with autism in Bangladesh

If someone had told me two years ago that I would be writing today about my son having autism, I would have said that could not be true. 

I did not see this coming, or maybe I chose not to see this. By the age of one, he would still not respond to his name. However, when my sister and mother pointed it out, I reasoned that perhaps we call him by too many names for him to recognize his own name.

I still did not want to believe it when his paediatrician pointed out the signs, as he kept calling his name and making sounds to attract him while he zoned off to his own world, paying no heed to what was happening around. I found myself becoming quietly angry with the paediatrician while he casually pointed out how he was not making any eye contact with us. 

He would flap his hands and walk and run haphazardly. When the doctor expressed his doubts that my son may be on the spectrum, I felt myself become numb. Suddenly, all the sound went from the room and I could hear my heart beating in my ears. What followed next were some hasty trips to Thailand and Singapore, only to ascertain that indeed my son was autistic.

What bothered me the most about this diagnosis was not the 15 hours a week of early intervention therapy, or having to fill out the paperwork in order to enrol him and begin his IEP for therapy school, or meeting with supervisors, or even that we did not know what the future might hold for him. It was that suddenly, the very things I loved about my son -- all the things that I felt made him unique and beautiful -- were now symptoms of a disorder.

The world does not see him the way I do. Although he becomes easily frustrated, he is so spirited in a way I never was or will be. I love that he lives in his own world and seems oblivious to the fact that he operates on a different wavelength than all the other kids around him. 

Some kids seem to fear him, some watch him as if they think he is a curiosity, while others are game to join him. Although he barely makes eye contact with us, when his eyes do find mine, his whole face lights up, and he laughs like it is the funniest thing in the whole world. No one sees how he grabs my face, brings my face to his, and squeals as if he is bringing me into his world with his two tiny hands.

I fought mentally against his Autism Spectrum Disorder (ASD) diagnosis because I hated the very idea of stifling his uniqueness with labels. It was not until I experienced one of his meltdowns that I began to understand why we needed this diagnosis. 

It was one of those social gatherings, and he became lost in yet another meltdown, seemingly out of nowhere. I had to hold him in my arms while he kicked and hit me and tried to throw himself on the ground. I could not console him and I could not calm him down, so I had to wait patiently for the moment to pass, while on the inside I was panicking. I was fighting back tears, while I felt everyone’s eyes from the hosts to the other guests, staring and judging.

In developing countries such as Bangladesh, finding proper intervention therapy centres is a challenge. The ones that are available are over-crowded and lack skilled professionals. There are special schools, but the mainstream schools are still unwilling to accept such children. The main problem lies with the attitude of the mass people. People are still unaware about autism, and some are not even willing to accept them as part of the society. The parents are the ones who suffer the most. 

Apart from the social pressures of having a child with ASD, most of the parents lack the guidance regarding the intervention programs that their children require. Children with autism spectrum need special education that the current system in the country is far too overwhelmed to provide. There are a few high-end schools for such children with properly skilled professionals and interventional plans, but unfortunately, these still are limited in capacity and out of reach for most middle-class families.

It has taken me a long time to get to where I am in accepting the initial diagnosis, and I know we still have a long road ahead -- in learning how to be his best advocate and navigating this new world post-diagnosis. I still find myself constantly analyzing his behaviour and questioning how much of it is normal quirky toddler development and how much is his autism. The more I analyze, the more I find that I do not really care anymore.

The diagnosis is important because it ensures that we will learn how to give him the tools to be successful, so he can carve the life he wants for himself -- just like any other parent with a child on or off the spectrum. Although I have no idea what the future will bring, I do know that he will have the life he wants for himself -- whatever life that will look like -- because he is more than the sum of his symptoms and no diagnosis will change him or define him. 

Farahnaz Zarrin works at LankaBangla Securities Limited.