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“Why fit in when you were born to stand out” – Dr Seuss
I remember this incident that happened a few years back…..
I had taken Dhruv to the park and while he was playing, this little girl came running and asked me in Hindi, “Aunty kya Dhruv pagal hai (meaning – Is Dhruv mad)?” …..
I felt like someone had punched me in the solar plexus and I looked at her in shock. She must have been about 5-6 years, and I guess she had heard someone talk about him. I don’t remember what I told her but I remember feeling sick and crushed to the core…..totally dejected!!!!
Our society at large does not understand Autism!! They assume that every Autistic person is “pagal” (mad), without knowing anything about his condition. The harsh reality is people assume that they have the right to judge you and your child whether they know about your child or not.
I realised that while I had been open about Dhruv’s Autism to the world, I hadn’t told the person it affected the most, namely Dhruv himself. This was a sensitive topic and it was important that the child was old enough and ready to understand it as you cannot tell a two-year-old he has Autism. Dhruv knew the word “Autism”. He had been in therapy long enough to hear the word spoken umpteen times and he saw it in the many books on Autism that we have at home. He heard the word when Gopan and I had conversations revolving around Autism. He even heard it being used during telephonic conversations, and of course, he read it a zillion times on his favorite gadget…my mobile phone, given that I am part of many Autism support groups. For all I know, may have even been bullied by other kids (in school) because he was not like “them”. He already knew he was “different” from other children, as he struggled with a lot of things most children his age took for granted.
Autism is a part of Dhruv. So, for me, it was important he learned about it in a way that made him feel positive about his condition and himself. I believe in the magic of books, so I picked up a book called “Autism Is…?”. This brilliant book is written by a lady whose grandson has Autism, as she wanted to explain Autism to him. It is written in a very simple way so that a child with Autism can understand it.
Last July I sat down with him while teaching him and we started reading the book. I read two pages and asked him,” Who has Autism?”. I expected him to say, Logan, the name of the child in the book. However, he surprised me by saying, “Dhruv has Autism”!! I was shocked but kept quiet. We read another page, and I asked him “What does Autism mean? “. He was quiet for a moment and then he said, “Vandana didi, therapy!” (We had just started therapy with a new Occupational Therapist, Vandana). I looked at him, trying to fight back tears, wanting to hug him. He, however, was very matter of fact and had moved on to the next part of his schedule. There are moments in your life that stay on forever in your memory and this was definitely one of them…Even without us telling him about his condition he had understood the essence of Autism in his own way!
Then we read the book together and I explained the positives of his being which came from Autism, like his love for music and spelling, or how he had the sharpest ear in our house and could hear even the slightest of sounds. The boy in the story too liked to read, spin, and jump like him, it was a relatable story. Then I explained that Autism was also the reason he found it “difficult” to do certain things. I don’t know how much he absorbed but that day we started the dialogue on Autism and hopefully, as he is growing up we will have more discussions on this.
Does Dhruv really understand Autism and how it truly affects his life? Not really. Autism is a lifelong condition and he needs to know about it so that he is comfortable with himself and has a good sense of self-esteem despite his many challenges. We cannot change society, and he will still meet ignorant people who judge him. Hopefully, we will be able to make him confident about himself, so that he knows, he is loved for who he is, and that Autism is nothing to be apologetic about.
Disclaimer:- This is a personal blog and the views expressed are my personal thoughts and are not meant to offend anyone’s beliefs and sensibilities.
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