COVID-19 hit us in a way most of us never anticipated.  Little did we know that this virus would upend our lives for months, continuing to keep many of us at home with no end in sight.  The repercussions of this have greatly affected many of us mentally, emotionally and financially.  It has also greatly impacted vulnerable members of the population such as those on the autism spectrum.

We reached out and asked families and members of the community to share their stories and experiences during lockdown.

Our 13-year-old son was (finally!) diagnosed in the middle of the lockdown with high-functioning autism, ADHD, anxiety & mild depression. New medication has been tried during lockdown, and we have been trying to homeschool daily. It has been highly challenging as we’ve had to change medication due to severe mood swings, lethargy, and violent tantrums. Most days are what we would deem “good” with minimal moods and general happiness. Lack of support and cabin-fever have been the main issues, in addition to looking after 2 younger daughters at the same time. 

The positive that has come out of this though, is that we have taken his grades from an “incomplete” or “fail” to B’s & C’s.

Lockdown has shown us that, at his core, our child is a good kid. He hugs us every night (if he hasn’t thrown a tantrum), will help out when asked, and can smile more often that not. The sun shines more often than not, and we have relished the good days, and can always get through the bad.

-Scott Kendall

I’m really struggling and I know everyone else is right now as well, and it’s just become overwhelming. My son and I had to move back with my parents for certain reasons and it has honestly become toxic during the pandemic. I am on homeless status list for my area but it is an 8 year wait if not more. My son is being affected by everyone’s negative behavior and is acting out, screaming, crying, banging his head. I just don’t know what to do in this situation. I’ve already tried sitting down and talking to everyone which just had everyone pointing fingers at me on my parenting when I’m just doing what his counsellors say is best.

-Anonymous

Tell me I’m not the only one dealing with a meltdown before 8AM?  Kicking screaming because I can’t understand what specific YouTube video he wants. More advanced communication is still fairly new to him this last year.

Honestly this virus has made me realize what a good decision it was to put our son in ABA at the age at 2, going now 2.5 years and he’s flourished

So much regression in terms of behaviour it’s so sad

D. D.

Not knowing or understanding the resources that available to help me in life, it’s been full of enough strife.

Mentally speaking, my life looks fine, but because I’m in locked down, it’s not a pretty sight, for me that figuring out what I can, do, leaves me struggling not to feel blue

Thankfully others have done research on how my mind works given me hope, some even spoke for me when my needs I couldn’t voice, because on locked down my words, wasn’t a hearing choice.

To live in life feeling locked down isn’t not so much fun, especially when it can make you feel numb, like your going crazy, because you feel different, so much can be said, not everything is locked down, but what is causes most to frown.

-By Karebear Poems/Aspiemepoetry.

I have 4-year-old twin boys, Yuri and Aki. Before the pandemic hit, they were doing ABA five times a week and school, where they received speech services. They also had other kids to play with.

When the pandemic hit, and everything was cancelled, I was originally worried and so was my husband, Yuki. What if they regress? What if all of the progress they had been making goes away? What if their old difficulties pop back up? How will I balance going to school, working both my jobs and being present with them? How will Yuki balance being in school and being present with them? How will we make sure that we are meeting all their needs?

Then, I stopped myself. As a licensed therapist and counsellor, I talk about coping skills all the time. I talk about the importance of mindfulness and being in the present moment. So I took a deep breath. I reminded myself that the boys have made significant progress – not ONLY because of all the services, but because of the work that they have put in, their own development and support of the adults around them. If they regressed, we will work with them.

It has been almost 3 months at this point. I am happy to report that they are doing great. They are continuing their growth – they play with each other and have each other, which helps tremendously. They are continuing to talk more and more. Would they be talking more if they were at school? Maybe. But we will never know.

The boys are thriving. Have there been difficult moments? Absolutely. However, those moments are few and far in between.

We give and receive lots of hugs and kisses. We praise and high fives whenever there is a good choice, as we call them “green choices.” We have a visual chart that shows the next activity and we try to incorporate activities as much as possible. We try to focus on the things that they love. For example, Yuri loves drawing, painting, singing, story telling, creating things with slime and play dough and pretend play. He also loves books. Aki loves singing, dancing, numbers, reading, and cars. He can write and read quite well and knows his numbers up to 100 too. He can actually count up in 2s, 3s, all the way up to 11s. Just the other day, he read, “no stopping any time.” He is also learning to play the piano by himself, with no prompts.

Although things are not perfect, we are doing well. I am still working two jobs (one full-time and one part-time) and I’m still in school (I am in a doctorate program). Yuki is still doing school too (he is in a masters program). We both have a 4.0 GPA. We are doing well. We focus on the positives and continue to be grateful for who they are. We try not to focus on “what if?”

-Chisato

Our life during lockdown has been extremely challenging. My 17-year-old autistic daughter did not cope at all. Continuous sleepless nights, started remembering everyone, people she has not seen for years. Attacked me twice, one day I couldn’t move away from her as she was pulling my hair. She attacked me off guard as I was sleeping. I felt alone and didn’t know who to turn to as are not allowed to see our families. I went into my car and just cried. Then I emailed the school and asked if there’s any possibility for my daughter to go to back. I had to weigh her mental well-being over health.

She started going to school since last week and is happy and calm. She needs her routine and structure.

This had made us fear more for post 25.

-Hazera

I have to say that I have been pleasantly surprised with my son during this entire ordeal.  He is a creature of habit, likes to know his day will look like and I know for a fact that he goes over the daily schedule with his teacher at school.  I was quite concerned that he would regress and lash out at not having a structured day and his regular routine at play, but boy, was I wrong.

He was so thrilled to be home with his father and I that he made absolutely no fuss about e-Learning with his teachers and fellow classmates.  Nothing can replace being with other children and learning in person, but I’m grateful he’s able to see his peers on a daily basis.

I won’t say that it has been smooth sailing throughout, we’ve had our challenges, but for the most part it has been a very positive experience for our family. Having said all of that, I do hope he’s able to return to school in September!  Fingers crossed it will happen!!

-Pearl