In our own words: Two years since the COVID-19 pandemic began, the autism community shares how life has changed
The COVID-19 pandemic has completely altered the way we live, work, socialize and even spend time with family. For some people with autism and their families, these uncertain times have magnified challenges and added stress to daily routines. For others, the pandemic has created opportunities that may not have existed before.
In this blog, you’ll hear from two people in the autism community as they discuss their personal experiences over the last two years and ways they’ve adapted to their new world.
Meet Ryan, 20
Growing up, I struggled with various things that came along with my autism, whether it was having poor eye contact, understanding key social cues, bullying throughout my school years or just being my true self. But I've had amazing friends and family, especially my mom, who has been with me through every step of the way. She helped me get the therapy I needed at a young age and eventually the autism diagnosis that would change my life. I wouldn’t want to leave out my puppy, “Guapo,” who is always there when I need a friend.
My future goal is to spread love, kindness, and equality around the world. I want to share my autism journey and encourage people not to give up on their dreams and goals, regardless of the challenges along the way. Over the last two years, we’ve all been affected by COVID-19 in some way. Unfortunately, I lost my grandma shortly after the pandemic began in 2020. It sent me into a spiral of depression, resentment and loneliness, which I wouldn’t wish on anyone. It took a great group of friends and the encouragement from my family to pull me out of those tough times. I’m so thankful to have them in my life during times like these.
Learn more about Ryan and his autism journey in this Q&A.
How has the pandemic impacted your mental health and wellbeing?
Losing my grandmother was very hard. That was just after the pandemic began, so it’s been difficult. I relied heavily on my support system to get me through that and many other setbacks along the way. It hasn’t been easy, but they’ve helped me become better physically and mentally. Whether it was encouraging me to eat healthier or eat in general through the grieving process, they helped me find ways to cope. I also began working out and taking my mind off things by playing video games, which seemed to help a lot.
What effect has COVID had on your social life and daily routines?
The COVID-19 pandemic has taken a significant toll with my social life and daily routines. It has limited me to staying in my house and the surrounding neighborhood. Even my friends are very cautious with going out in social settings during this pandemic, so our connections and relationships have been mainly limited to video gaming, calling and video chat. Wearing a mask has also impacted me in a lot of ways, especially with going to the gym. It's been difficult to work out for as long as I could before the mandatory mask procedures, but I would rather wear a mask and social distance than suffer the possible long-term consequences of COVID-19.
Have any of the services or therapies you rely on been affected by COVID restrictions or closures?
Yes, very much so. The standard mask protocols affect me wherever I go out in public. I’m also affected by things like caution tape around seating areas in waiting rooms and lobbies and having to be six feet apart inside stores and restaurants per CDC guidelines. Even my intensive home care team doesn't feel comfortable coming inside my house, so it’s been difficult to say the least. I feel comfortable with saying that COVID-19 has extremely limited the freedom of services and therapies.
How have you coped with the stress and uncertainty of the past two years?
I have opened my mind and body to new coping mechanisms and experiences so that my library of coping skills never fails to deliver in any given circumstance, whether it’s at work, in public or at home in a small family-focused space. My coping skills vary from music, drawing and video games to simple mindfulness meditation. Deep breathing has helped me in so many ways to overcome my stress and anxiety.
What are the biggest lessons you’ve learned from the challenges of the pandemic?
I have learned during the pandemic that life can go south really quickly, especially being blindsided by my grandma passing away from the COVID-19 virus to just the overall pandemic itself. But hope is the only thing stronger than fear and I always try to never lose hope by looking at the bright or positive side of things, even when it seems there's none to find. My greatest quote I have made and shared with my friends and family is:
“To get to the light at the end of the tunnel you must first face the darkness.”
This quote means that life is the biggest fight you’ll face and nothing’s going to beat you down more. But no matter what life throws at you, someday I promise it will get better. Whether it's tomorrow, the next day, or weeks to months from now, you just have to have hope and never give up because someday the sun will come out.
Meet Leslie, 4, and her mom, Hilary:
Hi, my name is Hilary and I’d like to introduce my daughter, Leslie, to the Autism Speaks community. Leslie has had delays since she was an infant. At every doctor’s appointment, we’d hear that she was behind in her development. At 15 months, referrals began for speech, occupational and physical therapies. She went through many different genetic tests to determine why she was having these delays with no answers. Finally, at the age of 3, we received an autism diagnosis. It was such a relief to finally have an answer and give her all the help she needs.
We tried applied behavior analysis (ABA), but after several months, we realized it was not a good fit for her. She is currently in Early Childhood Special Education (ECSE) through our neighborhood school. ECSE has been the perfect fit for her and has helped her grow leaps and bounds. She is doing so well and loves going to school now. She is social and loves to say hi to everyone!
If I had to highlight one of Leslie’s greatest challenges, I’d say it’s being a picky eater. She also becomes very frustrated at times because she can’t always find the words to tell us what she wants or needs, although that is improving every day. She is really showing us just how bright she is as she gets older—I can’t wait to see what the future holds for her.
Learn more about Leslie and her journey in this Q&A with her mom.
How has the COVID-19 pandemic impacted Leslie and your family?
Because the pandemic began right after Leslie turned 2, she really hasn't been too negatively impacted by it. I am a teacher, so when schools shut down in March 2020, I was home with Leslie and her sister, who was 7 at the time. I think it turned out to be a positive thing for her in some ways since she wasn’t impacted by school disruptions or anything like that. She grew so close to her sister since they only had each other to socialize with, which I couldn’t be happier about.
The only negative impact I would say is mask mandates because Leslie does not comprehend the importance of wearing one. When we flew on a family trip to Mexico, I was so worried because I had heard so many stories of families being kicked off planes because their child with autism would not wear a mask. Luckily, the airlines we flew on allowed people to apply for a mask exemption, but the stress of getting COVID tests before leaving still added tension to the process.
Have any of Leslie’s school services or therapies been affected by COVID restrictions or closures?
No, since she was too young when everything began, she doesn’t know any different now.
How has your family coped with the stress and uncertainty of the past two years?
I have tried to live life as normal as possible. We don't let the media stress us out and just go on with our lives as much as we can. We take things day by day and do what’s best for our family.
What are you doing to support Leslie’s growth and wellbeing during this time?
When the pandemic began, we were transitioning between therapy clinics due to insurance coverage. Prior to her autism diagnosis, Leslie began services at a new clinic in April of 2020 where she was doing speech, occupational and physical therapies.
When she received her diagnosis a year later, I began searching for an ABA clinic immediately since that's what was recommended. She began ABA in May of 2021, but it started out really rough for Leslie. It was a big change for her with the long hours and new demands. She was coming home with her eyes red from crying so much. But after a few weeks she began to adjust and form relationships.
Then about eight weeks in, I began to see Leslie having a rough time again. She started having more crying spells and coming home overly stressed. This is when I decided to transition from ABA to Early Childhood Special Education. ECSE has been such a positive experience for Leslie! She is there half a day and is in a small class of only five students. She looks forward to going to school and comes home happy! I have seen so much progress with her language. She is communicating with three- and four-word phrases and is able to express her wants and needs more effectively.
What are the biggest lessons you’ve learned from the challenges of the pandemic?
Happiness needs to come first for your child!