Following the theme of this blog, In Hindsight, I thought I’d look back on my childhood, growing up with an autistic sibling. As I allude to in my article on lockdown with Autism, apart from Linggesh’s inability to lie and cover up my chocolate-stealing crimes, there were many quirks to growing up with a sibling with Autism Spectrum Disorder (ASD). Some of it shaped who I am today right down to my personality. While others are just fun anecdotes we recall with fondness or a “phew thank god that’s over”. Anyone with an autistic sibling would tell you that their childhood couldn’t ever be defined as “normal”.

Then again, everyone’s childhood is subjectively different from others, (differing circumstances, environments and characters that raised them) good and bad. Childhood, as brief as it is in comparison to other stages of our lives, leaves a lasting impression well into adulthood.  Otherwise, we wouldn’t have the odd chip on the shoulder or deep-rooted emotional or psychological issues. However, we shall leave the unclogging of the deep-rooted issues for another day. Focusing on a lighter note, this list details the experiences and odd sentiments I became desensitised to until looking back now.

Being Stared At In Public

Now I’m not delusional. Linggesh is very clearly the odd one out when we’re in public. He talks to himself, laughing at some joke he has in his own language. He flaps his arms about like a chicken when he walks excitedly. Even his walk is quite unusually fluid, like an overcooked noodle. When upright, he sways side to side. So there is no denying that it is a unique sight for most people on the street. In a sea of people aware of how to act accordingly, it’s very hard not to stick out.

However, what I personally couldn’t fathom was the long stares. Eyes of scrutiny and confusion on this 12 year old flailing noodle. Almost as though they were offended. Surprisingly, in my experience, these stares came from adults too. Now, I understand the initial look, it’s only fair. It’s almost a reflex when you see something you’re not used to.

But to continuously stare?  What was so hard to fathom? These were the infuriating thoughts that invaded my mind if we were in public, like a restaurant. I felt a deep pins and needles like pressure digging into my shoulders from the eyes.

Flailing noodle boy who walks like a chicken? Gottit. Moving on. That’s how I’d process it. Meanwhile my parents, more seasoned, continued to mix Linggesh’s roti canai and curry  into mush, unbothered. Chicken noodle boy didn’t care either. I hated the way they didn’t give him a chance. He wasn’t hurting anyone. My parents taught him how to use his inside voice in public so he was barely disrupting. So what did I do? Well I stared right back, mirroring the same scrutiny they showed. It was an elating feeling when they’d take notice and look away sheepishly, but it was infuriating when they still couldn’t take a hint. Yes, maybe I was a little hot-head as a child.

Lesson Learnt:

Growing up you receive unwanted attention when you have an autistic sibling, it comes with the territory. It’s hard to not get annoyed, or uncomfortable. You begin to question people’s ability to empathise, or at the very least politely ignore. Even though Linggesh was the subject of scrutiny, he was in his own world, too happy about his roti canai to care. So I assumed I had to take it upon myself to feel burdened by it. Consequently you start to feel alone.

It took some time, but with the coaxing of my Mum I realised, making fun of the stares was a better healing process. We started to crack jokes if we noticed stares. Whether it’s the faces people pull or creating our own dialogue for what they must be thinking and play along. Because people can’t help scrutinising what they can’t understand.

Although as the years have gone by, I’ve seen a fair share of people who are just kind. Yes, they do the initial look. But now, they either smile and/or politely look away. The increased awareness of  people with disabilities mental or otherwise, has definitely brought on a kinder, accepting nature.

Explaining to friends

However when I was around 14 things started to change. An overwhelming response I got from friends when my autistic sibling came up was simply acceptance. “Oh ok.”

If there were questions it was mostly out of curiosity or interest. With time it became easier to explain Linggesh without the fear of losing friends. Most people especially at an older age, aren’t shallow enough to judge you for something that doesn’t affect them in any way.

But the Gibberish talk…

Although if it came to Linggesh’s gibberish talk (a form of verbal stimming), I think anyone would have been taken by surprise. Even after 27 years, it does give us a chuckle. If I were to describe it, it would be  a high-pitched excitable clucking paired with repeated words/phrases he heard from another conversation. Here’s a sound byte if my description doesn’t do the trick.  This excitable clucking is usually when he’s extremely happy, like a child playing pretend, which he likes to do in his free time. When happy, you may dance, sing along to your power ballad, Linggesh clucks.

Lesson Learnt:

A mantra I told myself as I got older was : if they’re my friends, they would understand. And if they weren’t then like weeds I would pluck them out of my life. And lo and behold, they all understood.

Growing Up With Tantrums

As I mentioned before, overactive “stimming”, can easily snowball into bigger issues- like a temper tantrum. We’ve figured out Linggesh’s trigger points. Sound. More specifically, shouting or yelling from someone else. Like a baby crying. Most autistic children have this trigger point, having extreme auditory sensitivity due to sensory overload. His fight, flight, freeze sensory response (the amygdala) was heightened. We learnt quickly that Linggesh didn’t like conflict even if it didn’t involve him.

Vibrations…

Since we had a big extended family, it was hard to avoid arguments or loud conversations. We were genetically wired to be loud.  Linggesh didn’t like that. He had the virtues of Superman, and the self-control of Hulk. His sharp ears kept us in line, resorting to more hushed conversations. But sound was such an important aspect to Linggesh and his way of life growing up. Be it family arguments, certain characters on TV, it always seemed amplified to him.

Tantrums

Specifically, during his puberty stage, were worse and unpredictable. Like most teenagers and their raging hormones, he couldn’t control his emotions, which quite frequently resulted in a blanketed reaction of anger. Followed by Linggesh turning violent towards us. It was a norm to get in between the cross fires. My second brother Yagnesh and I went through the worst: scratched, hit, hair pulled, because of Linggesh’s blind rage. We learnt to take in stride. And it was only when I got slightly older say 11/12, that I noticed it was odd. And it was in my own teenage years that I began to resent those times.

Jealousy came seeping in when friends reached “check points” trying to figure out boy trouble, while I figured out that Linggesh’s first line of attack was to go for our glasses. I can’t begin to tell you how many glasses were collateral damage to his attacks.

Lesson Learnt:

Put away the glasses when the tantrum comes!

The Full Moon

Ah the full moon. This sentiment deserves a whole other individual post, so I’ll keep it brief. Essentially, my mother would have a calendar that shows her the monthly full moons so we could anticipate certain reactions from Linggesh.  Yes you read that correctly. My mother, educator, and follower of scientific facts when it comes to health and autism, has given room to believe in moons. It was a norm growing up with an autistic brother, to try out new methods, to be one step ahead in decoding him. There is a strong belief in a community of people, that the full moon, does affect the emotional and mental state of people.

Now I’m not superstitious, I’m not even a little “stitious”. Oddly enough, as much as I want my mum to be wrong, there were many many full moons, where Linggesh was more reactive than other days.

I can hear you, “it s just a coincidence” and I say that to myself too, but the number of times this has been proven right in our household, is too hard to ignore. At 14, I liked that it shared a similar sentiment to that of werewolf logic, although my mum would be very offended if we connected it to “silly supernatural stories”. Because hers was fool-proof science. We tried to be extra careful on full moon days, making sure Linggesh was in a stable peaceful environment.

The correlation? I don’t quite know but I have a few  thoughts that I might tackle in another post. Stay tuned.

Lesson Learnt:

Growing up with an autistic sibling meant watching our parents try different ways to problem solve, or ease Linggesh. Sometimes as a parent you want to make sure you cover every base. My parents always prioritised the scientific take on autism, but have also delved into some parts of spirituality and being in tune with nature. When you want your child to be okay, you would cover any basis. There is something telling in how changes in nature affect us (hippie stuff I know) but maybe we just don’t notice it as much.

Linggesh, The Omniscient

Most autistic children have a certain affinity towards something. It could be interest in a whole country, or every Disney movie or even obscure like train schedules. For Linggesh it was a few things. Linggesh was very observant even as a child. So his observances were channeled into two: sense of direction and cars. It’s funny how despite growing up in the same environment, an autistic sibling can have better knowledge in a subject you were both exposed to.

As kids we use to go walking/cycling around the neighbourhood. While Yagnesh and I rode our bikes, my father and Linggesh bonded over a game of cars. My dad, a car-fanatic, would explain and show us the differences in makes and models. That’s when the obsession grew. In fact, it was an easier way for Linggesh to remember people. Some people know faces, others know names, but Linggesh, he knows the car they drove.

Amma: Hey you know I saw that kindergarten teacher of yours Mrs. Shanti, at the wedding- she’s the cousin of Devi, the aunt of the bride. She asked about you.

Me: Who?

Amma: *Sighs* The kindergarten teacher lah- such a nice lady, how can you not remember-

Me: Cause it was from kindergarten?

Linggesh: T-the one with the Honda C-civic ah Amma?

Amma: How am I suppose to know what she drives, it was so many years ago.

Appa: *from behind his Sudoku book* He’s right. I saw her getting in it.

Navigation Station

Linggesh is also the navigation station: Very aware of how to get home having been in the car countless times. While we thought he was focused on playing his CDs, he actually memorised most routine routes we take. This showed up more frequently with me behind the wheel than my parents. He would make his routine alarm of a sound: “MA”, looking straight at Amma if he knew I took the wrong turn. Naturally, I would get scolded for not knowing as much as my autistic sibling.

Monkey See-Monkey Do

Growing up with an older autistic sibling, ultimately feels like having the little brother I never had. Older by 4 years and taller, juxtaposed with a shy child-like demeanour, its hard not to take him for a kid. Our dynamics have always seemed more like older sister–younger brother. Apart from the Tamil term of respect I use to call him “perianna”(big elder brother), only the word “big” rings true.

Since I was 9, I’ve always taught him his homework. Let me paint a picture: I would sit him down at my little alphabet table, and tiny chair to match where I’d help him with his maths, and cognitive learning. I’d take on the role of strict teacher, pointing out his mistakes with a ruler. I seemed to know alot about power, positioning myself strategically, sat on a much higher leather roller chair, with the leaver pulled all the way up , so I would tower over him. He never took me seriously though, always giggling if I got stern.

The Lion King T-Shirt

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As we got older, his little brother ways seem to get stronger. Then I realised he loved copying me. Yes. Yes he does. Always wanting what I had, he seemed to model his life to mine. When I returned one summer from university, I was sporting  my favourite Lion King t-shirt I got from Primark. Soon after, I got a call from my mum saying that there was an emergency.

“We need a Lion king t-shirt in a size large, the same one you have.”

“Ma they’re for girls” I protest.

” He doesn’t ask for anything else Anishkaa, just do it!”

I couldn’t find the exact same, so I resorted to a custom-made one from an E-bay seller.

Okay maybe that was a one-off. Who doesn’t love Lion King? Here’s another:

I had a phase of wanting soya bean (soy milk) from the exact same vendor at the  morning market. We are a family of routine. Linggesh would watch me and my new formed habit. Being the king of curating habits himself, soon he started asking for his share. 

“M-ma, I-I also want” he said sheepishly.

“What you want?”

“S-ssoya bean” he says, his buck teeth showing as he wagged his finger at my cup of soya bean which I held away protectively. Now keep in mind, Linggesh isn’t very interested in material things or even food apart from what he eats for breakfast, lunch and dinner. He doesn’t snack. The horror. But he’s set in his ways. However, he made the exception for these particular things.

The Cup

Of course, there’s the cup. Moving my things from university, I shamefully revealed my extensive mug collection, from marvel cups, to Disney characters, I showed everyone my cups. No one was happy with their arrival.

“ Are we in the cup selling business now?”

“ Ma it’s only 11 cups.”

“How many mouths do you have??”

Linggesh’s eyes widen, lurking around the corner, one eye on my mother yelling at me, the other looking at my treasures. He picked out a single mug from the collection, a wide-mouthed, tea cup, with blue flowers all over it.

“ You wanna drink from it?” I ask him, to distract my annoyed mother.

He looks at the clock. It was dinner time. He nods.

Little did I know, from that day onwards, he imprinted on it, making this flower cup his own forever. Faithfully drinking from no other.

It’s quite a sight. A big burly boy like Linggesh, and his flowery tea cup with every meal. But he wore it well. It was my least favourite cup anyways, I could throw him a bone. Also as my parents like to guilt-trip, he just wants to be like me.

More where that came from …

So there you have it. Part 1 of the many quirks of growing up with an autistic sibling. While there are times we wish he could have a normal life like everyone else, but I’m pretty sure life wouldn’t have been as interesting were it not for his quirks. Any progression while may be small to others (like the odd fluke of him being sarcastic)  is something we celebrate, like a baby learning how to crawl.

And if we didn’t learn how to find humour in a lot of situations, coping would’ve been much harder. And if it weren’t for the colourful fragments of personality that make up Linggesh’s kaleidoscopic life, I don’t think I’d be anywhere near as sensible, sensitive and understanding as I’ve become. Yes, I managed to make it about me in the end.