Hello, lovelies! Today, I’m going to talk about what it’s been like being quarantined with someone with autism. I would like to preface this by saying that my situation is going to be very different from other people’s experiences. Autism is on a spectrum, so our experience with my brother, who is non-verbal, will be completely different from the experience of somebody else. I’m just sharing this because I’m sure someone will relate and to read back on this in a few years. I would recommend reading the whole thing because the headers give no information. With that said, let’s get into it.
//Background
Let’s start with some background information. My brother is 20-years-old (He was 19 when quarantine started), and still goes to public school. Special education services continue for four years after 12th grade. Mysoon is non-verbal. He can talk a little bit, but he still struggles with communicating. He’s bilingual like the rest of us, so he understands when we speak to him in either Bangla or English. He’s not particularly aggressive towards us. He more bangs on the furniture or the walls when he’s frustrated or wants something he can’t tell us, so that’s just one of the things we deal with. It’s not as bad as it is for some people.
My family took quarantine very seriously from the beginning because we couldn’t risk him getting it. Mysoon can’t be alone. By that I mean he can’t go to a hospital or somewhere alone. He can be without supervision at home. He also can’t tell us if he’s sick and we wouldn’t be able to quarantine him in the house, so we’d all be exposed to it if he got it. The main thing was that we wouldn’t be able to send him to a hospital by himself. There was awhile where even kids were taken to hospitals without their parents if they got the virus, and Mysoon would not have been compliant to anyone and something bad could happen to him.
So yeah, we were very serious about quarantine from the beginning. We didn’t want to risk anything. My dad works from home and my mom stays at home to take care of Mysoon. I came home from college in March and my youngest brother Zidan was in his senior year of high school at the time. Our grandparents came back from Bangladesh in August, so it’s been the seven of us at the house ever since. We rarely leave the house and are extremely safe when we do.
Also, Mysoon is very cuddly and empathetic. He loves hugs and holds our hands. He can also read our emotions pretty well. He understands if we’re happy, sad, or angry. There’s definitely this narrative that all people with autism act the same way, specifically in movies and T.V. shows. That’s 100% not the case.
//Routine
My mom worried a lot more about this than the rest of us. As you all probably know, my family got into a very bad sleep schedule early on in quarantine, and Mysoon fell suit. My mom was worried that not having his medicine on time would affect him (Before, he’d wake up at 5:30 AM), but it all turned out fine. He’d have the same medicines after each meal as usual. Just at a later time.
The rest of us were worried about bigger parts of his routine because Mysoon went out almost every day. My mom would take him grocery shopping and I’d take him to the library every weekend to pick out a DVD. Little routines like that. Mysoon has always preferred going out over staying home, and we were worried about him getting bored and asking to go places. It all turned out fine. He’s definitely been bored, but he hasn’t gotten upset over the fact that he can’t go out. He adjusted surprisingly easily. We thought he wouldn’t like that he had to stay in the car when we did grocery pickups. We also worried that he wouldn’t want to wear a mask, but the the second we handed it to him, he put it on. He’d wear it the entire time whenever we went to the park or took walks. He’s done a really great job overall. It’s been a struggle obviously, but he’s used to quarantine now. Especially since my grandparents got home because all the people he cares about are in one place.
It definitely helps that we’ve shown him that things are closed. I took him to the library a few months ago to return library books and showed him that no one was allowed to go inside. Other people are getting groceries dropped off to their cars. He sees his classmates in their own houses doing class through Zoom. That’s part of why he’s gotten used to this new routine. Whenever we shift our daily routines a little bit, it takes him a few days to adjust, but then he’s fine.
//Meals
Mysoon has actually been eating really well in quarantine. I feel like that has more to do with the progress he made pre-quarantine than it does with being at home. Up until a year ago, there were a few years where he didn’t eat a single vegetable. He would only eat very specific foods and we had to feed him that for most of his meals because he wouldn’t eat otherwise. Even now, Mysoon would starve himself before eating something he doesn’t want to. I don’t know if it’s a texture thing or something else. He used to eat really healthy when he was younger, then he suddenly stopped.
Now, he eats really well. Not being in school has actually helped with this, though the lunch lady there made him a quesadilla every day because he wouldn’t eat the school lunches (which is so nice!). For the most part, he wouldn’t eat until he got home from school in the afternoon. Because we’re at home, he can eat more frequent/smaller meals. Most of his healthy meal comes from when we feed him rice. He started eating Bengali food again, so my mom sneaks in eggs and a lot of vegetables into that meal since there are a lot of spices to mask the taste. He also eats a banana and a cut up pear every day, cereal, naan & chicken 65, chicken & tortilla, milk, etc. Sometimes we get him fast food. This aspect of quarantine went easier than we thought it would go. That’s been a general theme with most things in regards to quarantine. He’s handling it a lot better than we thought.
There are still definitely days where he doesn’t want to eat, but it doesn’t happen frequently. He has to have each meal in the same order. We had a problem for awhile when he’d wake up late because he’d be full but need to eat more. He wasn’t hungry, but he needed to have the next meal in that order. My mom would refuse him and he’d be cranky for an hour, but we genuinely have it easier than most. I know there are many special needs families struggling with feeding their child. I feel like this is one of those things that isn’t talked about enough. Normally when you hear about autism, it’s about communication and reading emotions, but not about how they eat.
//Anxiety
Mysoon stimmed a lot at the beginning of quarantine. He was very anxious and bit his nails significantly more. He did things that I had never seen him do like twitching his head and stuffing paper into his mouth. ( Don’t worry. He didn’t swallow it.) So even though he didn’t throw huge tantrums and get super upset about the change in routine, it was affecting him. I had honestly never seen him stim so much.
//Boredom
After the first month, Mysoon would walk around the house saying, “I’m bored.” He watches the same movies and T.V. shows over and over again, but that’s usually broken up with going to school and going out with us. When we were staying at home, he’d just watch the same things on repeat. I think it was getting to him. I’m glad he wasn’t upset that we weren’t going to the library or Wal-Mart anymore. Before, he’d leave the house every day, so we were surprised that he stopped asking to gol. He still gets excited about going on drives and leaving the house, but he hasn’t thrown any tantrums about not being able to go inside places. For that, we’re grateful, but I wished there was more for him to do. We did the only puzzle in our house three times.
Now, he has online school for multiple hours a day, so he hasn’t said “I’m bored” in awhile.
//School
School in the Spring semester was very different from what it is now. Mysoon’s teacher would have one-on-one sessions with him every afternoon in Spring. I would sit with him at the dining table to help him with his work and stay on task. Normally, his teachers would let him walk around in the classroom because he doesn’t like sitting for long stretches of time, but we can’t do that on Zoom. This wasn’t a problem in April because the sessions were relatively short. Now he has class all day.
We worried for awhile about how his classes would go in the Fall because all of us had gotten used to sleeping in late and thought it would be hard for Mysoon to start waking up at 7:30 every morning. Don’t get me wrong, sometimes he straight up said, “No.” and wouldn’t go to class, but he’s gotten used to it. My mom sits through the majority of his classes with him during the day. We thought we’d have to buy a laptop for him at the beginning of the semester because Zidan and I need our laptops for our own schoolwork, but we ended up figuring out how to use the iPad for his Zoom lectures. I just turn in his homework on my laptop.
Overall, everything has worked out fine. Mysoon can sit through most of his classes on his own with some prompting from us when he needs to answer questions. There are breaks in between classes, so he doesn’t get too bored or exhausted, but he does bite his nails and stim throughout the lessons. It’s getting better. Most of his homework consists of cooking meals and doing chores/life skills, so we take pictures of him doing that and upload them. He definitely got more out of the one-on-one sessions in Spring versus the group calls with his class.
//Clothes
I know that there are some people with autism who like to wear the same clothes every day, or have multiple sets of the same outfit. Mysoon isn’t that way with “going out” clothes, but he is that way with pajamas. Before, we’d wash his pajamas when he went to school. Once we started quarantining, he had no reason to change out of his pajamas, so he wouldn’t. We don’t really care that he wears track pants at home as long as he washes them. We’ve gone through a few different methods to do this. Sometimes, I take him on a drive and tell him to change his clothes before we go out. Other times, we just take them while he’s showering and he has to wear another pair of clothes for awhile while his favorite ones are being washed. The third thing we do is tell him we’ll get him fast food for doing laundry. (I am personally a fan of this one because Zidan and I get food, too 🙂 )
//Speech Regression
This has been the biggest problem that has arisen from quarantine. Mysoon is technically non-verbal, but he does talk some. Unfortunately, he can get away with saying very few words at home because we anticipate his needs. We can guess what he wants to eat or what he wants to do based on the time of day, so he can go an entire day saying, “Okay” or “No” without us noticing.
This has never been a problem before. Even during summer breaks, he was in different situations where he had to interact with people. We definitely weren’t a family that was embarrassed to go out in public. We took him everywhere. I think that thing in T.V. shows where characters get kicked out of movie theatres for being too loud is a myth because Mysoon talks during movies and literally no one has kicked us out. Most people aren’t bothered by it, and if they stare, who cares. Anyway, even during school breaks, my brother was in situations where he had to talk some. He also had speech therapy every day during school and there was a lot of opportunity for him to practice that skill.
So when his speech started regressing, we barely noticed. Particularly because our family can follow what he’s saying while others can’t. Mysoon has a lisp that we can understand. At some point last summer, he started slurring his words to the point where we couldn’t understand him. He handed me the remote and said something. I assumed he meant it was my turn and I could watch T.V., but when I changed the channel, he got really frustrated and tried saying something. I realized that he wanted to watch “Monster’s Inc.” after a few tries. Normally, we’d understand immediately.
It got to the point where we couldn’t understand a lot of the things he said, which is a problem. We’re trying to speak with him more and make him practice, but he’s not having it. When my mom talked to his school during his IEP meeting, I explained what was happening and they said that it’s been happening to a lot of students. There’s nothing that they can really do about it because we’re at home. Students are having less interactions with other people, so skill regression is expected.
I don’t have a silver lining to add here. We’re still dealing with this in real time. Hopefully, it’ll get better once there’s a safe vaccine and it’s easier to go out.
I’m gonna be honest. I had this blog post ready at the beginning of the month, but felt weird publishing it. I don’t know. I think it’s an informed consent thing. I always ask my brother point blank if he’s okay with me writing about him and he said okay, but I sometimes feel like I’ve shared too much or just barely scratched the surface.
Overall, quarantining with someone with autism was easier than we thought it would be. Like I said at the beginning of this post, our experience is completely unique to us. Autism is such a broad diagnosis that encompasses so many different types of people, so don’t generalize what I wrote and apply it to everyone. I just hope this post helped you feel less alone if you are a fellow special needs sibling.
Until next time!
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