Living with Autism: When the Hero Dies, My Brother Cheers

First day of eighth grade at a new school, and the teacher was asking everyone to introduce themselves. Eager to make a good impression, I enthusiastically talked about my favorite books, movies and ambition, which at that time was to become an archaeologist. The teacher wanted to know about my family, what my parents were doing and then the question I dreaded, did I have any brother or sister. “I don’t have any siblings”, the lie rolled out way too easily. I spent my entire first day of eighth grade feeling guilty, because I did have a brother, three years older than me. He was diagnosed with low functioning autism when he was a toddler. I couldn’t possibly tell my new friends that I have a sixteen-year-old brother who is still being taught how to brush his teeth. Some people, when they hear the word ‘autism’, they think of a quiet person with genius level intellect and with certain quirks. They would probably picture someone along the lines of the impossibly adorable Dr. Shaun Murphy or even Dustin Hoffman from ‘Rain Man’. But people tend to forget that autism exists on a spectrum. And we have largely been exposed to only one end of it, the more ‘acceptable’ end. There is little representation of people at the other side of the spectrum. People, who don’t communicate at all, have little control over their body, and are prone to self-harm and terrifying meltdowns. My brother Chandhru does all of the above and even more. He is impossible to ignore, especially in public. Living with a brother like that can be a bit troublesome for an awkward teenager (now awkward adult) who likes to draw as much little attention as possible. Family gatherings, dining out, vacations and weddings became unbearable. We have to always make sure that we don’t come across any triggers like balloons and firecrackers. Going to the movies with Chandhru is a unique form of torture. He would choose the most inappropriate moment to laugh. The hero would be whispering platitudes about love to his dying wife and my brother would be giggling his ass off. Chandhru doesn’t do anything in moderation. When he laughs, everyone in the vicinity can hear him and you do not want to be associated with such a guy in a theatre filled with rabid fans. I can laugh it off now but back then it was hard not to be affected by it. Whenever I see ‘normal’ families dining out, caught up in their own little world without having to worry about triggers, I would wish I had that. And that momentary wishful thought would be followed by self-loathing and crushing guilt. I was constantly feeling embarrassed, angry and sad and didn’t know what to do about it. And it wasn’t all because of my brother, but my parents, extended family and other ‘regular’ people too. I was always expected to adjust to his needs, never allowed to express my anger or fight with him like every other sister. I attended many autism workshops and not one talked about the needs of kids like me. It is always about the special child and the mother, rarely about the father and never about the sibling.

Having a sibling with autism is a unique experience. Your feelings towards them vacillate between overwhelming love and deep resentment. You would feel resentment towards them for being them, towards parents for not paying enough attention, and finally towards yourself for being such a horrible person. I had no one to talk to about what I really felt towards my brother save for a really awesome aunt who always lent a sympathetic ear. My life would have been much easier if the general public had a better attitude towards autistic people and their families. I don’t have any issues with little kids but I do have a problem with grown adults staring and passing snide comments at my brother whenever we are out in public. I hate it when people avert their eyes as if they are looking at something obscene, or when they attempt to do the hilarious ‘desperately trying not to stare’ look. I can understand the morbid fascination but instead of staring and mocking you could ask questions in a polite way. My mom and I are always on the lookout for opportunities to show off our vast knowledge on autism. I am not asking people to go out of their way to accommodate my brother. I just want him to be treated like any other normal boring person, with respect.

To parents of children with special needs, I know how hard life can get. I have seen my parents go through paralyzing fear, anger and grief whenever life throws a curveball through my brother which is difficult to dodge. But I implore you to not ignore your other child just because they don’t have any outward disability or disorder. They come with their own brand of issues, that is not often talked about and they can feel incredibly lonely and neglected. Lavishing your healthy child with material stuff is not going to help them in the slightest. I know it can be devastating to hear when your child says she is embarrassed about her autistic brother, but you have to talk them through it. It is hard to maintain objectivity when it concerns your child but do not end up making them feel guilty about their emotions. Make sure that they have a support group. Spend time with them, make them feel valued and appreciated. Do not neglect their mental health and remember to take care of yourself too.

To fellow siblings or other glass children out there (that’s what they call us, vibranium would have been a lot cooler though), I know the desire to punch someone in the face when they declare that our special sibling is a gift from God and that we are lucky to be ‘the chosen one’ who will be taking care of them. I know that we spend countless nights wide awake wondering how on earth are we going to deal with our brother/sister after our parents’ lifetime. Not to mention the existential crisis that strikes few people at 3 A.M, whether your parents decided to have you just so that your brother would always have someone to take care of him. But we would also feel that are problems are insignificant when compared to what our sibling and parents are going through. We would always be pressurized to be ‘good enough’ for our parents so that they don’t have to deal with more problems.

But I also want you to know that you will eventually be alright. It took me a long time to accept my brother and all his ‘quirks’. Talking to others going through similar issues really helped me. Never bottle up your emotions as they would end up turning into hatred towards your sibling and neither of you deserve that. So, express how you feel, find a healthy vent, and you will realize that loving your autistic brother/sister will be the easiest thing you will ever have to do. You will navigate life together and though it will be difficult it will be worth it. One day instead of trying to make yourself invisible, you will learn to run by their side in the rain, yelling joyfully without any inhibitions (Don’t do that though, I ended up with a cold and a sprained ankle). I spent years resenting my brother for something that was not his fault. But now I can talk about him, show him off to my friends proudly and say with confidence that together we would not dodge but overcome whatever curveball life would throw at us.

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Written by

- S. Sadhana (Junior Editor, RGNUL Cosmos)