The especially fun thing about autism is the way it’s always presenting me with predicaments that I never, in my life, imagined.
For example, how fast can you chase a toddler who figured out the lock on the front door, if you are wearing only a towel?
Hi. My name is Carrie. I have five kids and my second son, Jack, has autism. He is sixteen years old.
We are in the midst of a pandemic. Or perhaps at the beginning of a pandemic. According to some, the end of a pandemic.
Either way you see it, the rules around us have changed.
Masks, social distancing, quarantine after travel.
Last week I read an article about how Southwest Airlines asked a family to leave a flight because their 3-year old son with autism was unable to wear a mask.
The pilot taxied from the runway back to the gate.
Southwest had recently changed their policy to read that all passengers over the age of two must wear a face covering in order to prevent the spread of COVID-19. This is in line with guidance from the Center for Disease Control.
Listen, I didn’t want to read this.
In fact, it might surprise you to know I don’t seek out every article, piece of research, or public opinion about the spectrum disorder.
I can’t, you see, because I would spend most of days in a deep, dark abyss.
Also, I need you to know I believe masks. I believe they will keep us safe.
Yet three-year old Jack never, in one thousand years, would have worn a mask. He could barely wear socks. He cried when I offered him a banana. He ran away from me constantly.
I am not asking you to see my point of view.
But I hope you might.
To be honest, I don’t really know my point of view, except I have a son with autism and when he was three he would never have worn a mask and there are people medically unable to wear a mask and I don’t know where the line of medically unable and Autism Spectrum Disorder begins, and ends.
Again and again, I return to the reality that autism is an invisible diagnosis. He doesn’t require a wheelchair, or a service dog. He doesn’t take insulin, or wear hearing aides in his ears, or use an inhaler to take sweet gulps of necessary air.
Autism exists inside of him—inside his brain and his heart and is nervous system and his spirit.
It is easy to believe that his behavior is a choice he makes.
He does not choose to hesitate when you ask him a question.
He does not choose to move his body in repetitive movements.
He does not choose the sleeplessness of an altered circadian rhythm.
Autism is not a choice.
Then there’s the question of emotional age, as opposed to birth age. Because yes, Jack is sixteen in his body, but his heart and mind remain firmly closer to that of an 8-year old.
I think about this every time I have to fill out a form for school, or when we travel, or at the doctor’s office.
There are no boxes to explain your child’s emotional age. You just list the years he’s been on this planet and hope someone takes a look at this tall boy with glasses and knows why he jumps .
What if I could tell his truth instead?
What if I could write that he loves to fly but he hates peaches and he is anxious and rigid and earnest and gentle?
That he doesn’t seem to sleep longer than two hours at a time but he stays in bed and watches his clock radio and rubs his hands together until his eyes close once more?
That would take many pages, I guess.
As I continue along the path of my own humanhood, one thing becomes clearer to me by the day: I usually believe in many things at once.
I believe in following the rules.
I believe in grace.
I believe in preparation and questions ahead of time and social stories and planning.
I believe in safety and health.
I believe in policy.
Policy is good. It drives the health, and safety, and well-being of large groups of people.
I don’t know how company policy is made within a popular commercial airline, but I imagine long tables are involved. And maybe whiteboards.
Men and women sit around with cups of coffee and discuss why it’s time to require masks for all passengers. Maybe they use words like protocol and statistics.
Either way, they are doing very good work here. They are attempting to build their plane while they fly it, if you will.
At some point, they probably start with the what if part of the meeting. You know, troubleshooting stuff that might come up unexpectedly.
What if someone has a breathing issue that prevents the mask?
What if an older person needs oxygen and the masks interferes?
What if a passenger forgets to bring one?
If I believe many things at once, I also want many things at once.
I want this pandemic behind us and I want people to wear masks and I want my son to have the same chances as everyone else.
I want you to know how hard he tries to accomplish what comes easily for most of us.
Mostly, I want autism to be a part of the conversation.
What if we have a young child with autism, and he can’t tolerate something on his face?