MY AUTISM PANDEMIC EXPERIENCE

In my previous post, I was talking about autism and comorbidity, and I happened to mention some events that took place during the pandemic lockdown. So, I decided to just share with you what my son was doing during that time.

Now, my son was how old again at the time. Oh, yeah! He was 9 years old. I actually remember the whole horror like it happened this very morning. Sometimes I even get nightmares from the whole experience. Well, let’s dive into my story, shall we?

Okay, so, in 2018 I had to quit my full-time job where I worked as a Food and Weight Management Consultant at Dis-chem Pharmacy. It’s not common knowledge that severely autistic children go through a VIOLENT and AGGRESSIVE phase, and that this phase typically begins at age 10. But for some unknown reason, with my son, it started early. Earlier than I had prepared for. And as a result, I was sort of ambushed. Talk about getting caught off guard!

The violent and aggressive transition.

My son was living with a full-time nanny at the time who was assigned to him and his needs. Nothing more, nothing less. His birthday is on the 2nd of April as I am sure you all know by now because I did mention it in one of my posts, and on the third the phase kicked in fully. You know, like it’s been pre-scheduled to begin any more day later. It was doing a hostile takeover on my little boy.

He turned into a little wild animal and started beating the devil out of the poor nanny. To a point she resigned. Who would blame her though? I certainly didn’t because her butt was getting kicked every day by a child who threw punches like an adult. I tried to beg her and even offered her more money, but she was just too battered to want any salary increment, so, she left.

Let me provide an example of what this transition is like in the eyes of a severely autistic child. You know when you’ve taken a medication with a lot of serious side effects that include nausea, light headache, dizziness, flushing, and sweating just to list a few. Your body somewhat feels odd, almost like out of balance, and you know very well that this is not the usual you at all, and you also know that there is absolutely no way in hell you can function like this even for a few minutes.

The difference with you is that at least you’re normal, and you know that a body can feel like that now and again. But autistic individuals don’t know this and when it happens, it puts them on a very high alarm, causing a lot of panic and anxiety, coupled with stress and confusion of not knowing what the heck is going on with them and how they should cope, or how long it’s going to last.

A transition is like this for an autistic child and since this transition includes a new behaviour he was not used to and couldn’t interpret, coupled with the fact that he can’t speak to communicate what was happening to him and how he was feeling. He used the language that sort of made sense to him. He acted VIOLENTLY and got AGGRESSIVE.

So, you see, children with this type of autism can be aggressive and violent but that does not mean they are doing it on purpose but are acting out of fear and confusion. Except of course, I didn’t know this by then.

After the nanny left, I had no choice but to resign and come stay at home with him to help him transition smoothly into this phase which I didn’t know by the way how long it was going to last. And before I knew it, it was the end of 2019 and going on 2020 which looked sort of a little better, or maybe that was wishful thinking on my part, I don’t know.

I thought the storm was over but had no idea that shit was about to hit the fence for real this time!

I remember when the ALERT LEVEL 5 LOCKDOWN was announced and to be in effect from the 26th of March 2020. I still remember how strict the regulations were at the time and how mandatory it was for everyone to be indoors. I’m sure some of you may have an idea of what children with autism are like; how they depend on rigid repetitive behaviours (aka routine). I call this their coping and survival mechanism.

Let me speak a little about my son’s type of autism so you can follow me better. His type of autism is a level 3 or severe autism — you know, because I’ve written about levels of autism in this post. This means that he relies on someone else for everything, from bathing him down to feeding him.

What’s worse is that he is non-verbal, doesn’t differentiate anything, and has no awareness of what is happening around him. To top this all up is that not only does he suffer from a level 3 type of autism, but he also has obsessive compulsive disorder (OCD) and attention deficit hyperactivity disorder (ADHD). Read about autism and comorbidity here if you missed the link at the top.

Now, since my son suffers from this type of autism and these other two disorders, he was always a mess. Always running around like a madman, like he was running away from something.

He likes to run around you see (hyperactive), he likes to pluck leaves and peel things (OCD); anything that he can peel from wall paints to door paints to cemented floor, and he always chased after everything and everyone that passed by our home passage and played with a lot of things at the same time. He is literally all over the place like an octopus (ADHD). He likes to do a lot of things and some of them helped calm him down.

Then the lockdown began.

Firstly, our house is very small, it’s a three-roomed house with a tiny toilet. It’s one of those government houses. We started by locking the gates first to control who was coming in and going out because like I said, he didn’t differentiate and the fact that our house is by a passage where everyone was passing by didn’t serve us any justice at the time. He started pulling people from inside the yard. He would snatch their hats, caps, and even weaves (imagine), he even snatched their drinks as others would pass there holding their drinks in their hands.

Then we decided to lock him inside the house. We all locked ourselves in; myself, my mom, and my son. And for something like an hour, he didn’t seem to have a problem at all. He started crying, pushing, kicking, and screaming but we slept that night. However, we had no idea that it was going to be the last time we would get a peaceful sleep. The following day he continued where he had left off the previous day, and the situation escalated when he realized he wasn’t getting his way.

And then pandemonium broke loose.

This was day two of the lockdown. He started communicating using his Morse code word he uses to communicate everything, but nothing helped him. Then he started crying and screaming his lungs out. From there, he started banging his head against the wall and slapped himself. We tried comforting him, but he wouldn’t let us. He started beating us up; he pulled us by the hair, injured my spine, and broke my left wrist.

To this day my spinal cord has never been the same again. I can’t sit for too long or stand for too long and not lean on something. Heck, I can’t even walk a long distance, and I always use a pillow to support my back whenever I am seated. Plus, I wear wrist support now and again to help my hand function.

As if that was not enough, he started breaking things, peeled our wall and our floor, and tore at everything he could get his hands on. Our little house became his warzone. He would cry from sunrise to sunset and even in the middle of the night.

He never stopped except when he was eating, but as soon as that was done, he continued where he left off. It was a real nightmare living with him. He had become a little demon, and his violence and aggression had escalated in a way I’d never seen before. The whole experience was like watching one of those cheap-budget horror movies.

My mom and I would take turns to the little toilet — we would go there to catch a breath. Each one would go there and have a boiling-point moment and come back. We were not coping. The house was a mess. Everything was broken and it was so loud we stopped talking to each other because every time we did, my son would scream even more — like he was saying “why are you talking in a non-talking zone?”

It was the most impossible time for us, and we started feeling the abuse my son was throwing at us. We didn’t switch on any TV or radio. We just sat there in silence, exchanging looks, and wondering how were going to make it out alive or sane.

Then we found a way to help us cope.

We started sewing face masks. We did this to distract ourselves from the Devil who had captured my son and used his body as his host. We sew these face masks with tears streaming down our faces. We didn’t even know how to sew but we didn’t mind because through sewing we were able to ignore what my son was doing to us and our home.

We took the face masks and handed them over to those who didn’t have any, and this little deed was the one that helped us surf this crazy-wild autism pandemic wave. This is how my mom and I remember the lockdown days, and for our sakes’ we hope we never have to go through that again. In fact, no one should. If you thought it was hard for you, then know it was HELL for us, but we survived.

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