By Michael John Carley, Autism Self-Advocate & NEXT for AUTISM Board Member
There was tempered joy upon seeing my 23-year-old, who is also on the spectrum, exit the station. On one hand, C.C. was with us, his family, to ride out the coronavirus in less-impacted Wisconsin, joining Kathryn, myself, and his 14-year old brother. We were complete.
On the other hand, we had disrupted his life, which is a lot to ask of people with autism like him and me. Kathryn and I had lifted him out of New York City, not only the most welcoming place on earth to spectrumfolk like us, but also the place you want to be in times of crisis. Longtime former New York residents, before moving here to take care of in-laws, we’d learned from the AIDS crisis, 9/11, and the 2003 blackout that New Yorkers are simply more resilient than maybe anyone. What were we denying him?
In the car to Green Bay, we went over the plan to decontaminate his things.
“You’ll take all your clothes off and leave them and your luggage on the porch. Kathryn will have a bath ready… “
Then C.C. saw something on his phone.
“Dad!, They’re saying all New Yorkers leaving the city should quarantine for 14 days.”
Adjusting to Our New Life
Kathryn and I chose to abide by the warnings and quarantine C.C. Always concerned about germs, he had already been obeying the handwashing protocols and avoiding packed areas long before his peers. Still, it wasn’t fair. To come here meant an enormous amount of disruption, which is hard for people on the spectrum. C.C. had to quit a job where he was quite popular, and quitting (to a serious fault) is not in his nature. His reward? He was mostly stuck in his room. Furthermore, we couldn’t hug him to reassure him. He had no buddies in Green Bay to go vent with; Tinder and COVID-19 do not mix; and what young adult wants to request every lemonade and snack? We, in turn, would sanitize the bathroom every time he used it.
Inside our bathroom door. #arteveryday
To C.C.’s credit, he rose to the challenge and immediately adopted a rigid exercise schedule, an elixir for anxiety and a regimen to combat the softness he’d developed from a 10-hour-a- day desk job and after work visits to bars. Every day now there’s a 2-mile bike ride, a full tennis game with me, and an intense DVD workout. The T-25 or “Insanity” exercise programs are staples in our house. The harder they are, the more they do wonders for folks like C.C. and me, as they keep us more physically and emotionally regulated than most spectrumfolk. Especially now, it helps me to be more of the “Mr. Spock” spectrum-type that my family needs me to be, rather than the (justifiably) anxious spectrumite I might be otherwise.
In my work in the autism field, I find it so hard to convey what is the simplest of messages: that when we are not regulated, we simply cannot learn. By design, it’s not possible. Exercise helps focus people on the spectrum, so does structure. Especially now.
Before the pandemic, our lives had already started to become very structured, thanks to my younger son, Duke, who is not on the spectrum and has aspirations to become a professional soccer goalie. Our family had developed a disciplined routine to fit in Duke’s school and training. Now, that routine has become the foundation for all four of us. My days are regimented for the first 14+ hours. Kathryn and online teachers homeschool Duke from 10AM to 5PM. This keeps us occupied, productive, building things, more focused on what we can control, and not what we can’t.
L-R My schedule and Duke’s workout options on my office wall.
And for one hour of homeschooling a day, Duke is mine! Under the disingenuous guise of “You just need to understand how this stuff works” (ha!) we are chronologically examining Western and percussive music history on Mondays; watching “Sister Wendy” art history videos on Tuesdays; breaking down Casablanca scene by scene on Wednesdays; reading aloud words meant to be performed from King Lear on “Drama Thursdays,” and words meant to be read from Marquez’s (timely!) Love in the Time of Cholera on “Literature Fridays.” I am in heaven.
At 8:30 pm, we all play cards or Wii sports together (no cell phones allowed). Therein, and throughout these secluded days, I constantly hear the familiar, singular sound of our combined laughter.
And the Future?
Coronavirus has us worrying long-term about finances. But we have money in the bank and a basement of food. I have individual, video peer-mentoring clients, and a couple of ongoing writing gigs. We are far luckier than most.
About a month ago, I also landed a dream job, one that this summer would bring us back East. After 8 interviews over 5 months, I was chosen to help define disability culture at a major university in the tri-state area. Thank the Gods, I thought, I was going home to New York where I’ve always felt a sense of belonging (difficult for autistics like me). We only had to wait for Duke to finish 8th grade.
But COVID-19 had other ideas. Two days after I was offered the dream job, the university implemented a hiring freeze, “to be revisited in 60-90 days.” Given the economic uncertainty, who knows if the job will still exist. And for me to be anything but tremendously understanding, would be heinous.
What city we’ll be living in four months from now is a mystery. Perhaps also an opportunity? New York will always be the city that loves me most, and New Yorkers really deserve our cheers right now. But if I am strong in any moment, it is because I am loved. My home is with them.
Michael John Carley is a member of the board of directors at NEXT for AUTISM. For more information about Michael, please visit www.michaeljohncarley.com.