Autism affects an estimated 1 in 54 children annually, which represents a 10% increase over 2014.
All this month we celebrate and shine a light on all individuals with ASD and their families for the beauty and light they bring into our world. We welcome guest author Nicole Gorman, M.Ed. from the Alyssa Burnett Adult Life Center.
In April of every year, I prepare to celebrate the United Nation’s recognition of World Autism Awareness Day or I prepare to deliver an article or a presentation on Autism. I suppose this year is no different in that regard; although my approach to these April tasks seems oddly changed by the last pandemic year that we have all endured. In doing a little research, just in the last few weeks, it appears that the climate of our world is starting to become more hopeful. The approval of a 3rd COVID-19 vaccine with high efficacy, the passing of a Stimulus Package that will help many recover from the pandemic, the decreasing COVID-19 cases, the increasing vaccination schedule, and the commitment from educators to strategize a safe return to the classroom has painted a much nicer picture for the months ahead. And the glorious PNW sun – shining on us when we need it the most – after this year of uncertainty.
When the pandemic barreled down on us last spring, I was in the final months of my field work hours at the Adult Life Center. My son with autism was approaching his 8th grade graduation and we were preparing to celebrate with a summertime Alaskan cruise. I suppose I don’t really have to tell you that – EVERYTHING CHANGED WITH THE PANDEMIC. Over this last year, on multiple occasions, I have been reminded of those first years after my son was diagnosed with autism. The rapid changing pace of things, the confusion around protocols, the fear around health and safety – all brought back a flood of memories of those initial months when the learning curve for a newly diagnosed family is steep. This past year also reminded me of what I learned all those years ago during that unique time.
I learned how to set new expectations. I set out each day, when my son was little, with ONE goal to accomplish. Some days, that goal was simply to get a shower or to have a hot meal. Some days, I paid bills or attempted a visit to the grocery store. On one glorious day, I put a wallpaper border up in the bathroom. I set only one goal each day so that I could manage the unpredictability of my son’s behavior and still feel like I accomplished something. I found no use in attempting multiple things a day and then being forced to abort them when the gardeners arrived early with loud machines or the lady in the grocery store with us had filled the aisle with the smell of her perfume.
I learned what I could control and what I couldn’t control. I couldn’t control the arrival of the loud gardening machines or the smelly lady in the grocery store, but I could control my expectations for myself each day – and by extension for my son’s day. Learning this was an adjustment for me. As a proud and engaged mom, I wanted to be able to control all the variables that would impact my son’s life. I wanted to minimize the struggle that he was obviously enduring. By focusing on the variables in my control and letting go of the ones I couldn’t, I gained a sense of calm and reserve.
I learned to adapt to the uncertainty. If my son were struggling that day, that was okay, we could change our ONE goal. We could make a new plan for the day. Perhaps tomorrow we will get TWO goals completed! For a super planner like myself, it took time to adapt and to do it gracefully; however, my perspective changed about my son’s diagnosis and what life was going to be like for my family.
These things I learned helped me understand autism at a much deeper level. I was present with the behavior, with the challenges, and with the triumphs every single moment of every single day. Now, when last year’s pandemic presented a whole new way of living – a reduction of in person social connections, a fear of illness even death, and the stress of rapidly changing schedules and expectations – I recalled that I have endured profound changes to my life before and I can do this again.
I can set new expectations.
I can control some things and not others.
I can adapt to uncertainty.
As a larger community, as we resume some semblance of normalcy in our daily routines, I hope to remember both the learning from 15 years ago and the learning from this pandemic year. Both times provided an opportunity to perceive the world differently, to reassess my priorities, and to be patient with the life I was given.
Autism guided me through a pandemic.
By Nicole Gorman, M.Ed.
Program Coordinator III
Alyssa Burnett Adult Life Center