Lockdown with Autism: The Ruined Routine

The COVID-19 Lockdown has clearly caused a whirlwind of changes to our lives in a matter of weeks. #StayAtHome while is trendy to tag in posts isn’t as glamorous in action. We’re not on the same boat , but we’re facing the same storm, peering cautiously into the murky depths of the dark waters where the insidious Covid-19 continues to terrorise us.  While we stay in our  “boats” not letting Corona win, most of us are battling something insidious within us too. Corona’s tentacle-grip on humankind has created side effects. On the surface, we sit at home, doing what’s right for the greater good, grateful for the health and safety of ourselves and loved ones. However, not all of us can fully comprehend these strange times. Notably, the Autism community have particularly shown great struggle in adapting to this new way of life during the lockdown period.

It is important to remember that even the average person has that uneasy, unnerving feeling of being in quarantine. It feels stuffy, lethargic; the atmosphere is thick and humid, like after rainfall on a hot day. Consequently, it slows us down, our fears and anxieties take over the idle mind, manifesting in different ways. For instance, some fear being infected, some miss their loved ones, others worry about where their next paycheck is coming from. Needless to say, this lockdown has exacerbated the mental health of many. Comparatively, lockdown with autism will definitely have worse effects.

While we may never feel the same anxieties as someone with autism, the world under lockdown as horrific as it is, is a teachable moment in scratching the surface of what they experience, as we are both affected by our ruined routines this time.

Autism and the Effects of Lockdown

Autism Spectrum Disorder (ASD) as the name states, is a spectrum. Therefore, every experience you’ve had with an autistic individual will differ from another, much like the average person. For this reason, the strength and challenges of each autistic person is never the exact same as their IQ vary significantly resulting in some having good verbal communication skills while others lack it.

 However, they do have similar patterns in characteristics in daily life. To illustrate, they have very specific routines they adhere to or specific interests they don’t stray away from (e.g. a cartoon character or song, computers, cars, or even a particular country).

Some of the core symptoms of autism are lack of social communication across different contexts and restricted, repetitive patterns of behaviour and interests.

Diagnostic and Statistical Manual of Mental Disorders (DSM-5) 

Comparatively in my own  experience, having a brother with ASD and having worked with children on the spectrum, a huge majority, crave routine.  Linggesh’s entire life is ruled by the likeness of routine, time, and repetition. Change of anything within their schedule wreaks havoc, as its a betrayal to their system. “Kids and adults with ASD turn to routine, sameness…. as a way to comfort themselves and to bring calm and self regulation to an otherwise anxious mind.” (Applied Behaviour Analysis Edu.org)

The Effects of a Ruined Routine

So how does routine and autism relate to the recent lockdown orders? The strict protocols that most countries have implemented have made daily routines not quite as practical anymore. As  a result, there’s no going to school or work, after-school activities are canceled, no routine drives to the park or seeing their favourite teacher. Linggesh is no different, he has mediocre verbal communication skills at age 27 and a very rigid daily schedule set in place. As a consequence, the new life of lockdown with autism has definitely set up particular challenges for someone who needs his routine to function.

In addition, autistic people struggle to regulate or verbalise their emotions. This results in them turning to habits and repetitive behaviours in the form of “stimming”. It’s a repetitive habit like biting your nails, playing with your hair, drumming your fingers. In comparison, this behaviour shows up a little different with autism:

• Hand flapping
• Rocking
• Jumping
• Pacing
• Rearranging objects

While these actions may seem odd, experts say that this repetitive behaviour in routine or stimming in autism is not to be seen as negative. Instead, it is a coping mechanism the autistic person has concocted for themselves. This could be to reduce/ gain sensory input, and sometimes even for enjoyment. With the lockdown in mind, many of us can relate to our own increase in involuntary habits like nail biting or hair twirling so the same can be said for those with autism. However, there is a chance these actions can turn harmful when they are too stressed:

• Head banging
• Hitting
• Pulling Hair

“Reality to an autistic person is a confusing, interacting mass of events… Set routines and rituals all help to get order…reducing some of the terrible fear.”

Jolliffe (1992) in Howlin (2004), p.137

Lockdown Life: What Now for Someone with Autism?

Ultimately, the lockdown efforts are creating positive change in flattening the curve. Simultaneously it has caused high levels of anxiety for the autism community who can’t cary out routine under lockdown conditions. Most families who have a member on the autism spectrum will agree that routine in autistic children and/or adults brings peace to the family as a whole. Therefore, when routine is broken, with no clear view of what happens next, their reactions vary. For example, some become incessant with questions, whereas others may “stim”more than usual which can sometimes turn violent against themselves or others.  Although anxiety is not considered a core feature of ASD, 40% of young people with ASD have clinically elevated levels of anxiety or at least one anxiety disorder, including obsessive compulsive disorder. 

Under these circumstances,  for many parents/guardians, it would be quite a feat to get them to understand something as intangible as a virus or the logic of lockdown. Even the statistics we see on our TV screens everyday aren’t enough to prove the need to stay at home.With that said, the story below is just something I want to share about the struggles of lockdown with autism and the domino effect it has on us all. How ultimately, our shared anxiety of the lockdown, can bridge us to better understand the mind of someone with autism.

Lockdown with Autism: A Story

If I were to describe Linggesh now (it changes with age), this era I would say he is a dent on the bed. Everyday he sits in the exact position on his bed in the corner next to the wall that now, results in a significant dip to one side of the mattress. While this may seem harsh its best the description that my family will agree with as its said with love. That dent is hard to ignore, a force to be reckoned with.

My relationship with my brother Linggesh growing consisted of animal instinct. Everything was communicated in actions. The nods, the eye contacts, the nudges. My second brother and I were wildly protective of him on the outside, mismatched, like a ducklings protecting a burly bear cub. Any odd stare from literal grown adults, unable to comprehend a 12 year old boy laughing, talking to himself arms flapping away. It would send our blood boiling. So I’d stare back, folding my arms, trying to appear larger than my 4’9” stature. Anything to make it seem like my eight year old self was Tony Montana in Scarface, any wrong move from them, and I had something up my sleeve. Say hello to my little friend. But when we were home, all bets were off. I expected camaraderie in my crimes while he, well he did as he pleased.

Linggesh Age 12

At age 8, I stole chocolates from the freezer, this was a regular occurrence for me. Unfortunately, Linggesh was my only eye witness having been walking up and down the halls as part of his routine.

“Shhh okay? Don’t tell Ma.”

Linggesh didn’t say very much, he was always a man of few words. He looked at me, with the corner of his eyes a smirk forming followed by a nod. Look, I would’ve bribed him by splitting my stash in half, luring him into my crime, but he didn’t like sweet food! (That was actually one of the things I liked about him) 

My mum came home from work and naturally found that the freezer was rummaged, the unassuming Prego sauce jar  in the deep corner was raided to reveal the coveted M&Ms. This wasn’t my first pillaging, I knew to go for the repurposed jars. 

“Who did this?!” Amma yells into the air. Her eyes fall on the only two possible culprits myself and my other brother who was looking very calm as he did the mental math of the chances of him getting the cane. This wasn’t Amma’s first rodeo either: 

“Linggesh? Who took the M&Ms?”

I look away, the heart beat in my throat threatening to crawl up to my mouth. Linggesh looks away, shy. He eyes me, again with the sly smirk. This was when I realised it was chemically impossible for Linggesh to lie.  Shit. 

An Altered Childhood

And so it started. The slight discrepancies between Linggesh and a normal brother. It was pretty easy to juxtapose, as my second brother and I were typical siblings. A brother on the spectrum has definitely shaped my life a little different from people around me. There is a sense of urgency in the rest of us “growing up “ faster. The rose tinted view on life is a little less tinted when your brother is “different”.

In other words, we were held to a higher responsibility than someone our age. But it was all we knew, this version of protecting, being the bigger person, having sense and sensibility. So naturally, Linggesh had many restrictions in his life therefore we had to consider him in everything we planned. No matter the plan, Linggesh had to be taken care of. And with age, not much has changed apart from him taking his own showers, brushing his teeth, and eating on his own. However, despite it being the norm, it was natural for us kids to kick up a fuss:

“Why can’t we just go without him?”

” We’ve been listening to the same song for an hour!” 

“How come he gets to ride shot gun?”

“Do we really have to watch Little Mermaid AGAIN?”

And it was all met with the same tired answer.

“ You are smarter than him, I’m sure you can figure it out”  As much as I had default love for my brother, he really did ruin my plans.

Linggesh Age 27

Cut to now, the world is under construction. Most of us have gone back to our homes, and I did the same. Being home felt good but odd. Everyone was home. My childhood room was now a storeroom, hoarding everyone’s memories. Old shoes, Amma’s saris, baby clothes, school uniforms, stuff we don’t use anymore but held on to. The shelves were filled with college notebooks, books from Blyton, Dahl, Snickett to Wilde, Melville and Nabokov, all layered in dust. It was stuck in time. And now I rest in that little room, one with the nest of nostalgia. I comfort myself that this will be over soon. Malaysia was already in lockdown for the 3^rd or 4^th week, we’d be out soon.

Linggesh walks up and down the hall talking to himself, getting agitated. This is a standard ritual he has but with if you know anyone with autism, the tiniest triggers snowball to a meltdown, and the recent lockdown was an avalanche of a trigger. He’s having a conversation with his demons as my mum likes to call it. He scolds the air, like a strict teacher punishing a student, naturally he plays both parts. Amma calls me closer to her.

“He wants his haircut.”

I turn to my dad, who is within earshot. His eyes did not leave the newspaper held up to his face.  Linggesh has to have a haircut every two weeks. He was 3 weeks overdue.

Linggesh continues wagging his finger at the air. “I told you! I told you!” in a shrill high pitched voice, (he’s probably on the teacher’s bit).  The tuft of thick black hair barely reached his ear. I roll my eyes.  All shops were closed. He could get over it.

Day 18 of Lockdown

“You heard there’s been 5 more people who died today” Appa speaks from behind the paper. 

“Died or admitted?”

“Died.”

Amma tuts shaking her head, she signals me to the stand fan right next to her. I sigh, getting up to turn it on for her.

” You want to turn on the aircon? It’s so hot.” Appa asks us.

Amma looks up from her phone, shaking her head. “No no-the water bill itself is so high, and you know how much onions cost now? Fan is fine.”

Amma’s phone dings. It was one of her Whatsapp group chats with more videos and conspiracy about Coronavirus. Linggesh smacking his head hard interrupts us.

“Linggesh calm down” 

He vanishes into the room and slams the door. We hear screeching. He was making a point.

“P-Pa why you don’t have work?” His hands are in the air as he pulls at his fingers violently, his face scrunching up like he smelt something funny.

“ Everyone is sick da, its not safe so no work for Appa.” This was routine by now. The questions, the reactions. He couldn’t comprehend why Appa was home at 3pm, on a Wednesday. Linggesh starts talking to himself again. To the trained ear, you can tell that he was conveying this exchange with Appa to his demons.

“G-go go to work Pa!” he says as he walks off to his room again. Appa chuckles, but we knew it hit a sensitive spot. It was a rough time. I could feel my child self coming back out. We were all suffering. People were dying and Linggesh wants a stupid haircut? 

“He’s too spoilt” I conclude.

Day 27 of Lockdown

I hear yelling and voices. It was coming from Linggesh’s room. I rush in to find Linggesh in one of  his tantrums. My mum sits next to him trying to calm him down to no avail. I could see it in his eyes, this was going to be a full blow out. If you’ve been through something like this, there’s no right way to deal with it. The anger, the animalistic violence, the fear of neighbours hearing your child/sibling. All paired to the background of shrill screams.

I see the look in my mother’s eyes. I’ve never seen a range of emotions cross any other face quite the same way. It was like reading a book. It started with fear. The fear of him hurting himself or others. Then frustration, that after all these years, the progress was set back. Logic and reasoning wouldn’t help them pull through this one. All Linggesh did in return was get louder. They soothed, they reprimanded, they pleaded. Then the grief hits. Seeing their child go through his own pain and the uneasy wave of realisation that they can’t be there for him their whole life.

“ Linggesh, the neighbours will call the police. They will get you, then Amma can’t come help!” I hear Ma’s voice break at the end of that sentence. He was smart though, he knew the police wouldn’t come. The neighbours knew how Linggesh was. They’ve probably heard many screams just like this so they’ve stopped asking. Lockdown was bad enough for them, let alone someone with autism. He starts whining, his face scrunched up into just lines and wrinkles like a prune. Ma sits down at the edge of the bed staring at him blankly. 

The Trial and Error Of Coping Mechanisms

He slowly makes no noise at all, his arms twisting resembling bread knots. If someone walked in, it would look like an exorcism. He was just short of levitating. But the funny thing is, this isn’t the worst he could get, there have been worse times. So in an odd way, I felt relief, tinged with a lingering fear that it may snowball.

He reaches the next phase. The shrill yells. Pa walks in, phone in hand listening to yet another corona update from the 100th group chat of uncles and aunties. This wasn’t anything new. We all stare at Linggesh who went back to silently agonising. The only sound was coming from the creaking of the ceiling fan, barely picking up wind. Futile. Much like the rest of us felt.  

“Okay enough, Linggesh deep breaths, breathe in…” Ma says exaggerating her breathing. Linggesh starts banging his head against the wall. The sound echoes through the house. Deep breaths was a no go.

“NoooNooo!”

“Use your words” I inject sternly as Pa and I try to hold his arms down from hitting himself again. But he’s strong. A brute force, a super strength he could summon when wanted, but not when we need his help with the groceries.

“Okay go take a cold shower.” Amma says. He gets up immediately. Guess it was the cold shower that worked this time.

 Out of the shower, the anger lingers. He flips his shirt several times before putting it on. We’re in the clear.

“Linggesh you can’t keep doing this-” Amma starts.

Linggesh starts hitting his head as an answer. Appa puts away his phone, eyebrows in a permanent furrow.

“Come.”

Amma and I look at Appa. This wasn’t a part of the plan. 

Giving In

Linggesh immediately stops talking. He’s alert from the tone Appa used. He knew what was coming. Appa and Linggesh have an interesting bond so much so, I would joke Linggesh had him wrapped around his finger. Therefore, he knew Appa would give in to his tantrums and sure enough, he still does. Even at 27 years old. They walk out of the porch and get in the car.

Ah. The fuss today was for his daily car rides he didn’t get anymore.

It was Appa that always gave in despite our efforts to show Linggesh that in reality especially in this reality right now, routines weren’t realistic. Amma and I watch as he got his car ride. Sort of.  They drove up and down the street, listening to his favourites CDs. Something about the numbers decreasing in each track soothed him. Nervously, I peer around for any neighbours in sight, they yelled at an old man who didn’t have a mask on yesterday. Would they give leeway for a boy with autism despite lockdown protocol? They’re in the car and back that’s all, I console myself.

“Wasting petrol” I say, looking at Amma.

“It’s not like we’re going anywhere else,”Amma sighs. “He’s feeling restless, they’re just in the car and back home.”

I snort. “You all have spoilt him so much, he’s walking all over you.” I walk away to my room. Eight year old me was back. It was tiring and frustrating to handle meltdowns every day. We were all stuck can’t he see that? His routine didn’t change so much, he was a homebody anyway. So was I. There’s a rise in domestic violence, people are unemployed, some are dying. We’re not nearly as bad. We can’t complain. I knew that.

Day 32 of Lockdown

Lying in bed I stare at the ceiling where I had stuck glow in the dark stars years ago. They didn’t glow anymore. Dust outlined the moon, hanging like a cobweb. The cracks on the wall almost look like they’re slithering as I stare deeper. Rubbing my eyes, I jump out of bed fast. The rush of blood to my head makes me dizzy. Probably the most exercise I did all month!

My laptop mindlessly auto-plays yet another Youtube video in the background (to drown out the stuffiness I was feeling).  Today I was mid-way through a compilation of the Kardashians eating salad on their show which was odd seeing as I never bothered watching them before. I wonder how they’re dealing with the lockdown. The other tabs open were conspiracy theories, Tik Tok compilations, anything but Covid news. A job site was open on a tab. It’s starts to get hot again. No one’s hiring going to hire you now idiot. My soft toys stare back at me in judgment. It was getting really hot again. Maybe I’ll try tomorrow. A nap will help for now.

Day 36 of Lockdown

My dad is working on his Math questions for his students. Amma was meditating in her room. The air around me felt thick causing sweat droplets to snake down my back, clinging to my t-shirt like second skin. I plug in my earphones and walk around the house. With the music blaring I pretend that I’m walking down the street on a normal day. A corona-less day.  I am walking to the store for groceries, no, I was at the movies-nay, even better, I am at university, about to head in to another lecture. With purpose. 

I don’t know how long I was making circles around the couch (my university), up and down the hall (the park).  Suddenly, I felt heaviness behind me. Turning quickly I find Linggesh walking behind me in his own world, having a conversation with himself. I stop walking. He moves past, unaware of me, in his own world. The new dialogue today was impersonating my mother mentioning that we were going to the market. Which we don’t do anymore. He was pretending to be our aunt in America who we haven’t seen in months. He was daydreaming too.

Day 45 of Lockdown

Typing away on my laptop at my makeshift desk in my storeroom, I browse through another job opening. I felt like a giant. Overgrown. The colours, the posters, the toys mock me. After all these years, you’re still here? I turn on the stand fan and still, it was around me, the stuffiness. On chokehold. There was a loud knock on the door. Linggesh pops his head in with the same lopsided smile. Sly.

“Paaskingwanna gointhe carornot”

“Go in the car?” I ask pulling down my headphones. He walks away leaving the door open.

I walk towards the car. My dad and Linggesh are seated in it. I could hear the muffled radio going on. I open the car door, the air-conditioning greets me like a dear old friend, fresh, clean, crisp. In ten minutes, the drive around our neighbourhood, felt like a vacation. There were a few masked people. Taking their evening walk, or buying milk powder at the corner store. A stray dog digs around dumpsters for food. We cruise by the deserted like characters in an apocalypse movie.

We sat in the car listening to music and pretending we were on a road trip. Linggesh played 5 different songs in this time, singing along loudly. He never got the words right. Pa like me, was in another world, as he turned a corner, heading back home. For that 10 minutes, the thick suffocating air was gone. A car ride, who knew.

“P-pa to-tomorrow haircut?”

Appa nods. That’s to deal with tomorrow.

At home, Amma patiently awaits our return from the long journey. I see the back of Linggesh’s head, his hair sweeps the nape of his neck now. I sigh in defeat.

‘Y’know what, I actually have an electric shaver we can use to trim his hair.”

For Information on Coping Mechanisms During COVID-19 Lockdown

While its great to relate through stories and not feel alone, here are some links to professional advice on how you can alleviate the struggle/anxiety of a ruined routine for your autistic family member or friend under lockdown:

• How To Modify Routines During the COVID-19 Lockdown
• Coping Mechanisms for Stimming
• Ways to Detect and Calm Down Anxiety in Autism