COVID-19 on the autism spectrum

Nov. 10, 2021 / By Precious Porter, RN, BSN

I look at my 14-year-old boy every day and think how much I love this guy. His quirks and all! He’s come a long way. He was first diagnosed with high functioning autism when he was around 10 years old. Although others in school started to recognize some of his behaviors as “odd” or even “bad” earlier in childhood, we still found it difficult to distinguish this from what we considered “normal behaviors” at home.

Sometimes we didn’t see what teachers and staff saw at school because, to my son, home was his safe place and he could act how he wanted around us. My son headed back to school two months ago, after an entire school year of being at home due to the COVID-19 pandemic. A sense of relief washed over me when I finally made the decision to send him back. It was a tough one, but knowing he was fully vaccinated helped alleviate some of that worry.

I wanted to share with you seven ideals that have helped my son and I navigate this pandemic.

  1. Knowledge is power

My son is what I call a “docukid.” He loves watching documentaries and learning as much as possible about the science behind everything. He also keeps up with the news. I believe having knowledge made things easier for my son to accept all this change, not just in school, but in all aspects of our lives. Knowing about the virus, how it spread and why these precautions needed to be taken, helped my son recognize the gravity of the situation.

  1. Routine

Having my son at home with me during the school year made me realize everything teachers experience on a daily basis. I was already going a bit crazy by the third week he was home, and they have to handle 20 plus students per class! I made sure to try to get him up at about the same time every day. We have his daily schedule printed out in bold by his computer and in the bathroom with all his activities from morning self care and school online class schedule, to meal times, time with his dogs, homework and chores. This routine has helped immensely with his attention and kept him on task (most of the time).

  1. Teacher feedback

As a parent, I felt obligated to be in the know regarding my son’s online school performance. I always made sure to email the teachers to give them a quick background about my son before he joined their class. I let them know about his diagnosis and unique facts about him. The “he may look like he’s spacing out, but ask him a question! He’ll know exactly where you’re at and give you an intelligent answer!” response is one of my staple email quotes about him. I encourage the teachers to contact me with any issues they may encounter with him or if he’s falling behind somewhere. The earlier we can help him, the better he does in class.

  1. Get help for them

Probably the best advice I ever got from a school staff member was to get a my son a tutor. Some kids just don’t want to learn from their parents. Teachers can offer information on resources available to students like after school programs, one-on-one free time with the teacher, or even student tutors trying to get college credit. Teachers are wonderful resources and often donate their time to students who make the effort to try.

As for help on a personal level, sometimes there comes a time when you can’t help them anymore and they need to talk to someone else. We have hired a counselor to help him voice any stress he may be having. Although it doesn’t always solve every issue, I hope knowing his parents took the effort to look for the support he needs shows him how much we care about him.

  1. Get help for yourself

I struggle every day to be a good parent and I wonder if I am making the right decisions. I have said some things to my son that I regret. I’ve had some interactions with teachers who don’t quite understand my son or the learning plan we have put in place. There was even a long stretch when my son wouldn’t speak to his dad. It felt like being a single parent. Stress can build upon itself, and getting that support you need is the first step to helping your child.

I found groups within my workplace that support parents and family members of children with special needs, and they even have more specific groups for autism. We meet monthly on video calls, and I find that listening in on their conversations gives me a big lift even when I’m busy. Social media hubs also have support groups. Speaking with and listening to others who understand your circumstances makes you feel empowered and gives you a sense of community. You feel less alone. Through the sharing of experiences, you can get support, encouragement and advice. Sometimes the best therapy comes from the voice of others who have walked in your shoes.

  1. Give them space

When my son reaches a level of what he perceives as high stress, his first reaction is to shake or twitch his shoulders and hands, and then he shuts down. Over time, we’ve learned that giving him space to cool down is our best tactic to get him to a point when we can actually talk things through.

  1. Communication

I’m still working on how to best communicate with my son. Even now, I still struggle. Teenage angst plus being autistic? I can’t count how many times I’ve butted heads with my boy. There are days when he just doesn’t want to talk, and there are days when he just wants to joke around. When he’s stressed, he speaks in whispers and inaudible sounds. This makes it difficult to understand what he needs and wants. Giving him space works most days, but what if the conversation can’t wait? These are the day to day issues I encounter with him. Even though it can be challenging, keeping those communication lines open no matter what makes for significantly better interactions later.

Precious Porter, RN, BSN, clinical data analyst at 3M Health Information Systems.