by Tulika Prasad
We were at an indoor water park a few weeks back and the pool we were in had a basketball hoop that a few other kids were playing at. My son was happy just watching the game and would keep jumping in , all excited . That’s when one of the kids asked him if he wanted to join them. He was kind and genuine. My son was incognizant. The kid waited a while and then moved on and continued to play with his group. We moved on to another pool that caught my son’s attention. Later that night I looked back at this episode and wondered which side of the incident I was on – my son ,unable to respond because of his autism, in-spite of the fact that he was clearly interested enough or that boy who tried to be friendly and then gave up. Whose fault was it that my little boy was not in any of those pop-up playgroups that I know he so desperately would have wanted to be in? I wonder what needs to be fixed – my son or the world around him ?
Every year I watch my son stand next to his birthday cake, no friends cheering for him, I see him in his school, walking all alone with his aide, no “companion in crime” whispering secrets in his ears, sitting on a bench in the cafeteria, secluded, probably to avoid overstimulation, while the rest of his classmates peek into each other lunch boxes. I see him at family get togethers and parties, rolling aimlessly on a couch in a corner, away from the rest of the kids who flock around a stray dog or pretend to be pirates.I see him alone and friendless; no playdates, no hideouts, no bike races, no nothing. I’ve seen the twinkle in his eyes when a kid approaches him and then the blankness that follows when he is unable to communicate further. I’ve watched curious, friendly and kind kids walk up to him, greet him, compliment him or invite him to join them. These kids want to know him, to reach out to him but the silence that autism has filled in my son’s life snatches away that opportunity from him. Who is at fault for my son’s loneliness ? The kids who tried and gave up on him or my son’s autism?
As I entered the store with an iPad that clearly screamed the story of its abuse through its shattered screen, the young man at the counter asked what happened. I calmly said, my son threw it down the stairs. He likes watching things fall. The man was aghast at my nonchalance and blurted out- what a brat! You need to talk to him about this!! My mommy defense came up. I clarified that my son is autistic and non-verbal and that language comprehension is still an emerging skill for him. He probably either ignored this information or was ignorant because the next thing he said was “I would spank that kid. That’s how he’ll know”. I didn’t know how to respond – laugh at his complete nescience or be appalled by his suggestion.
I wondered what a lot of other people around me might thought about my son – brat? Spoilt? Impudent ? That autistic child who in struggling to make sense of the world around him and dealing with all kinds of sensory issues every minute of everyday is labeled a brat for no fault of his. But then neither is it that salesman’s fault who was completely clueless about autism or what it means. I can’t claim to know everything about every diagnosis out there so I can’t expect the same from others. I would have expected a little more restrain in his comments but that’s besides the point. The fact that every time my son has a meltdown, there is probably a pair of eyes out there staring down at him and judging him , that when he gets overstimulated he might get really close to you or make a physical contact that might make you call him a weirdo is what makes me wonder who’s fault is it – my son’s autism that makes him have less control over what he is feeling or doing or the complete ignorance of people around him, people who I shouldn’t expect to know just by looking at him that he has a diagnosis ?
My boy has been laughed at, ignored, judged, undermined and left out ; because he has a diagnosis that he has no control over. He has also been loved and valued by people who are kind and who believe in him. I have seen the good and the bad. He has experienced it. He is all but 10 !
Every so often I encounter situations where I stand in the middle, looking both ways , trying to figure out which side justifies what happened. My son has a ton of challenges that make him unique, his needs- different, his skills – apart. It also makes the world around him react to him very differently, some good, some not so good; some insensitive, some supportive, some informed and some ignorant. I’m not sure who to blame for the hurt that it causes.
My son has Autism and it’s not his fault. It’s not mine either, neither is it anybody’s else. And when no one is to blame, it’s a challenging road to be on.
Tulika Prasad is mom to Vedant, a handsome young boy who was diagnosed with autism when he was 3. Among other things that have changed after the diagnosis is her perspective towards life. Together with her spouse, Ravish, she is enjoying bringing up her son who is teaching them new lessons every step of the way. She shares her family’s experiences, stories and tips on this unique journey with autism on her blog at www.braindroplets.com