About Autism, a Little boy and Nobody’s fault

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, inspite 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 together 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 it’s abuse through it’s 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.

6 thoughts on “About Autism, a Little boy and Nobody’s fault”

  1. I always eagerly wait for your article, this is “The Best” one. I think we all are autistic that way but as Ravish rightly analyzed and said to me once on a different topic that it’s about the frequency that people are tuned to, his frequency is different than rest. Everyone has set of personal, group and worldly frequency, he just tunes to his own that we are not adjusted to. It’s just like this- if you go to any other country where you don’t know the custom, language or can’t adjust then you will feel the same way( remote village in China, Africa or deep somewhere in the middle east or any other country where they don’t speak common language), just that we think we understand our situation is our own illusion.

    1. That’s a very good analogy. It would give you a glimpse of a non-verbal autistic person’s life if you try being in a strange place with a language you don’t know and customs you don’t understand and then try to communicate.

  2. The sentence that comes to my mind after reading this blog is: “hum bheed meine bhi akele hai, aur woh ekele meine bhi bheed hai..”

  3. This is so true. In some ways it makes it more difficult because we don’t have a target for our anger. That’s why it’s important to take it one day at a time.

  4. Hi Mrs. Prasad,
    I am a graduate learner at Capella University in their PhD program and a Board Certified Behavior Analyst; I came upon your blog a few weeks ago and found it very interesting. Your heartfelt narration of everyday life with your beautiful son, especially the struggles and the triumphs are so endearing and candid. I am looking to recruit a few south Asian and Asian American families for my study titled Experiences of Asian-American Parents, raising a child with Autism Spectrum Disorder-A Qualitative Study” under the direction of my mentor, Dr. Gabriela Mihalache PhD.
    The purpose of the study is to explore the unique experiences of Asian and South Asian -American parents raising their child diagnosed with Autism Spectrum Disorder in the United States. This study seeks to understand their unique experience and add to the body of research. The reason for this request is permission to post a recruitment flyer on your web site to recruit potential research participants that are willing to participate in the above-mentioned study.
    I will be able to provide a copy of all Capella University IRB-approved documents and a copy of the flyer for approval. I want to assure you that any information received from potential participants will be kept confidential. Please email me if you are interested and I can provide further information regarding this study.

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