April snuck up on me this year. Over the years, I’ve come to dread this month. Before it even begins, the mainstream media and many for-profit companies begin to cash in on a disorder that’s left my son with more problems than solutions. For 30 solid days we hear how glorious the media think autism is. Forgetting that it’s a spectrum disorder and that many children, like mine, have very limited abilities because of autism, it can be nauseating.
COVID-19 created massive changes this April and reduced autism reporting and product-label hijacking normally seen. Instead of the typical blue-washing that usually happens this month, I’ve seen a thousand times more COVID-19 related stories than autism stories in the news. I haven’t seen nearly as many autism signs or packaging in grocery stores either. I appreciate that I am seeing less autism awareness campaigns in 2020. A staunch supporter of autism action, I believe that awareness can only go so far. The continuous increased rise in autism, which is now 1 in 54, proves that.
That rate was announced in late March. Not an unusual time to share that sort of information, I had forgotten that an updated rate would be announced around then. Thanks to COVID-19, by the end of March a Tuesday felt like a Sunday, and a Friday felt like a Monday. Well into the kids’ new eLearning schedule and our family’s quarantine routine, I’d begun to lose track of time. With no appointments to run out to, each day began to meld uneventfully into the next. I had truly forgot what day it was and what month is was. That is until Ronan had seizures. It wasn’t until I went to document the 11 seizures he had on the calendar that I realized it was April 1st.
While the mainstream media focused their news stories on COVID-19 and fast-tracked liability-free vaccines, Ronan had a steady stream of seizures on the 1st day of a month I usually wish we could skip over. One right after the other, it was not an easy day for him. It was not an easy day for any of us. With the whole family home, we sprang into action taking seizure watch. We then took turns making sure Ronan stayed cozy in one spot as the emergency medication took effect. Sometimes he will get quick relief. Other times, it can take an hour or longer for him to be comfortable again.
Hoping that Ronan would be able to sleep off the late-morning seizure activity, Ronan stayed awake into the early afternoon. Sitting behind me in an over-sized chair in our office, and through two scheduled Zoom meetings of mine, I kept an ever-watchful eye on him with the help of his youngest sister for the rest of the day. Without any further seizure activity, Ronan fell asleep at his usual bedtime later than night.
The day after a rash of seizures can be just as frustrating and emotional as the day of the seizures. He got to sleep in, but I wasn’t surprised when Ronan woke up on April 2nd, which society has dubbed World Autism Awareness Day, a little grumpy. Dude, I feel ya, I wanted to say. I’m not a big fan of this day either. But I kept that to myself and got Ronan everything he’d need to have a carefree, easy day.
Easy for him meant more taxing for me. I keep a watchful eye on Ronan every day. I kick up that constant supervision on seizure days. Post-seizure days are no different. A new round of seizures can happen that following day. The third day post-seizures is better, but even then, I can never fully relax. Autism doesn’t allow it. Seizures don’t either. So I hover. I hover over him looking for any signs of seizures and constantly pray that he’ll be okay.
Other stories may have taken autism out of the daily newsfeed, but it’s still here. Ask any parent who has a kid like mine, and we’ll let you know. Autism is still here. Awareness this year may have diminished, but the need for some action to reduce the rate of a debilitating disorder has only grown. When autism gets its turn in the news cycle again, I hope that the media will consider changing their narrative and get on the autism action bandwagon. We’re painfully aware that autism exists, and it’s beyond time for some action.
Reduce the rate, and prevent the problems that have come with it. Autism isn’t a novel virus. But it is medical and treatable. Isn’t it time that this disorder be taken as seriously as the coronavirus has been? With all of my heart, I think it is.
Cathy Jameson is a Contributing Editor for Age of Autism.