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Autism Pride Day: Life lessons I learnt from my son’s special needs

New DelhiWritten By: Tashneem ChaudhuryUpdated: Jun 18, 2023, 11:15 AM IST
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Photograph:(Twitter)

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You can choose to be broken or not broken. It’s a choice you make every day. When you encounter a big personal challenge like this, it can teach you a million things; most importantly to value life beneath its superficiality and to understand the real meaning of ‘courage.’

My elder son wouldn’t play with kids of his age, had/has a crazy passion for music, so much so that he could identify any song the moment he heard the first lines, could rattle off all the nursery rhymes/alphabets by the time he was 3, but couldn’t communicate with us properly. He also had trouble sleeping, had particular favourite foods that he could eat for weeks and months without asking for a change, and wanted fixed set routines in his day else he would get disoriented and I would have a particularly rough day. 

In playschool, his teacher said she thought he was ‘different’ and asked us to see an early intervention counsellor. Navigating through the denials and the shocks and the grief and the uncountable visits to the emergency rooms of hospitals (since he also has a related medical condition), by the time he was 5, the writing on the wall was clear. He was given a diagnosis of an autism spectrum disorder (ASD). 

The associated neurological issues that followed slowly affected his developmental and learning processes. Yet, despite it all, he remained a cheerful, happy, sunny, little boy who treated his regular EEGs and MRIs with some amount of crying and then quickly exhibited happiness on school trips and family holidays and outings with his special needs friends. He was an ordinary boy after all, just that his life turned out to be not so ordinary. 

While nothing can ever prepare a parent for something like this, what makes this journey special and imbue it with an incredible amount of depth is the fact that if there is no searing grief, how do you recognise euphoria? And euphoric is how we felt through every little progress of his; from the first time he ate independently, to the time he finally became toilet trained, to finally saying hello to his little brother when he was a newborn in hospital and indulging in monosyllabic need based conversations that have improved over the years.

Today, at 16, we feel proud of the young teen that he is, and how far he has come from being the boy he was with a little bit of help from us and largely his own grit and determination. Life is still not perfect and the everyday struggles continue but the little triumphs help.

The good thing is a personal challenge like this can make you understand humility, servitude, sacrifice and the dark bits of life that are essential to be able to see the light.

You can choose to be broken or not broken. It’s a choice you make every day and when you encounter a big personal challenge like this, it can teach you a million things; most importantly to value life beneath its superficiality and to understand the real meaning of ‘courage.’

Every other thing becomes minuscule in comparison.

I recently read an article that talks about how parents of autistic children should not get disheartened and instead feel proud of the fact that they have a child that expresses themselves truly with regard to emotions like anger, sadness, vulnerability and so on and so forth. It also says that anybody with autism is actually perfect because they live in a raw state without the veneer that so many adults cultivate over the years of growing up as they lose their sense of identity and who they actually are so the mask is all one can see; you would never see the real person within. 

This is all true, but then there is a saying that: If you've met one person with autism, you've met just one person with autism!

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This basically means that every autistic child/person or for that matter anybody who has some kind of special need or other, is unique. None of their 'problems' or 'talents' are comparable with the next special needs person you will meet. And yes, every child with autism need not necessarily be a genius as celluloid portrays; they may just have basic skills to get by in life. And that’s ok. Celebrate that!

There are always two sides to the coin: you may see a parent or sibling feeling a lot of pride when the autistic child does something unexpected or beyond their capabilities, but then you may also be staring at days and months and years of despair and a tiny thread of hope that they cling to when this condition progressively turns worse or the autistic child/adult regresses after a point of time. There's no saying what could happen next as many a time if one has autism, there are other related conditions that dog them and then the journey gets tougher and tougher.  
 
According to the National Health Service (NHS),UK, Autism spectrum disorder (ASD), usually called autism, is something you’re born with. Autism means that the way you think about and experience the world is different to most people. This means you can behave differently to most people, and have different strengths and difficulties. 

Autism comes with a  host of other issues that can be anything from Attention deficit hyperactivity disorder (ADHD), to problems with reading, writing and spelling (dyslexia) clumsy movements and problems with organisation and following instructions (developmental co-ordination disorder, or dyspraxia), insomnia, mental health issues, learning disabilities, epilepsy, muscle and joint problems, etc.,

In a nutshell, it is a life that is filled with struggle; an extraordinary 'special' life that cannot be comparable in any way with the life of 'normal' people. As the autistic child struggles, so do the parents or the primary caretaker. The WHO (World Health Organization) says that this neurodevelopmental disorder affects at least 1 in 100 children. 

According to the CDC (Centers For Disease Control and Prevention), as of 2023, around 75 million people have autism spectrum disorder, that's 1% of the world's population. It also says that  says more children are being diagnosed with autism than ever before. The rates may reflect a growing awareness of autism spectrum disorder and a focus on getting more children into treatment. Other factors could be air pollution, low birth weight, or even stress that has led to an increase in diagnoses. 

This is actually a virtual, invisible pandemic that has been raging on for years and is increasing significantly and something that nobody really seems to have any control over. Autism is a condition, not an illness that needs to be managed but cannot be cured or treated. Different therapies as per the condition of the child or adult are generally used to help ease their day-to-day struggles. What is it living with autism or living with a child or adult with autism? To know that, one has to live this life.

As the world is progressing and we fight/talk/discuss rights for minorities, the LGBTQ communities, and so many others, we must remember that special needs kids and their families also require support. Employers, the government, NGOs and regulatory bodies should put their full weight behind this cause to effect changes and bring about inclusion, support neurodiversity and make their voices heard.
 
Today, June 18 is Autism Pride Day and instead of giving in to sloganeering, unreal promises and looking for causes to support, look at what's around you: children and adults with special needs, some self-reliant, some not and they are a reality. 

They need empathy, sensitivity and support. That's how you make the world a better place for your neurotypical and our neurodivergent children to grow up in.

Everything else is just empty rhetoric. 


(Disclaimer: The views of the writer do not represent the views of WION or ZMCL. Nor does WION or ZMCL endorse the views of the writer.)
 

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