Free to Be
“Hello!” I joyfully call out to the nice host at the Middle Eastern restaurant, “I’m the one who called earlier about my son with autism; I need a table by the window.” He obligingly sets me up at the selected table where I am meeting my dear friend, Amy. We haven’t seen each other in months and are so looking forward to catching up. I position myself at the table so I have the best view of the street. As I choose my spot inside, just outside the restaurant Joey has chosen his spot. The reason for my spot is clear, the reason for his I may never understand, but it seems to be so that he can rock his body and look at cars.
For as long as I can remember Joey has loved watching cars go by. Or at least I think that’s what he likes, because he communicates non-verbally. For all I know it could just be the sound of the wheels, the reflection on the bumpers, or possibly the numbers and letters on license plates. Without question, he wants to be as close to the street as possible and watching from inside is not an option. In fact, there is nothing about virtual life that Joey tolerates for long. He watches no television, has no interest in any type of tablet, and rushes to be outside no matter what the weather.
This, as you can imagine, presents some challenges. He is a very handsome, sometimes poorly shaven, man. I confess that I have days when my need to get out the door trumps my desire to struggle with him in the shower, and make him look like the cool hipster I know he can be. When Joey was young, and I was younger, I was constantly self-conscious of my son’s actions, like stuffing his arms down the inside of his coat, or making sudden bursts of interesting but incoherent sounds. Luckily, time has a way of desensitizing that fear and unnecessary self-consciousness. If I had to worry about the way others were judging him or me, I would crumble to the ground and do what too many parents do; not allow their children with autism to leave the house. Only time, loving support from others, and searching for and finding my own inner strengths have allowed me to honor his freedom and celebrate my liberation from what others might or might not be thinking of me or Joey.
As an avid cyclist, about a year ago I made Joey a safety vest that says, “Autistic. Be Kind” so that other cyclists would be understanding of his situation while we rode together on busy San Francisco streets. It worked so well that we began using the vest as we went about our everyday life. Today, as I waited for my pal, it proved extremely valuable on the dark and busy street of this upscale neighborhood. I called the waiter over to ask a few questions about the menu because of Joey’s dozens of food intolerances. I looked up without my glasses, and could hazily see a woman was talking to him as people often do, making sure he’s okay, and I could tell instantly that there was kindness attached to the conversation. I could see she was holding his hands and her head was tilted in a way that looked warmhearted. Always eager to foster community, I burst out of my chair and yelled out the door, “His name is Joey!”
“Betsy, it’s ME!” Amy shouts and joins me inside at the dinner table. As happy as I am to see her and begin catching up, I can already feel the tension of trying to protect Joey with one eye and pay attention to my friend with the other. Our conversation is filled with “hold that thought!” “I’ll be right back,” and “okay, where were we?”
About twenty minutes in, I see the familiar approach of a police officer. The two officers approach him and one makes eye contact with me through the window. He pops inside before I have a chance to burst out the door, “Is he with you?” “Yes!” I feel the urge to apologize as if Joey doesn’t have the right to stand out front. “No problem,” he replies, “We just had six calls and needed to make sure he was cared for. You enjoy your dinner!” The other officer waves to us and they leave.
Amy looks at me, “Betsy, that vest! Imagine the response if he wasn’t wearing it...if he couldn’t respond and they didn’t recognize his autistic characteristics?”
I know she is right. I know those police officers and other first responders all appreciate the heads up, as they realize there is nothing to fear, and it seems to allow them to have a softer response. Time and again TSA security, police, bus drivers, grocery store clerks and people, in general, tell me, “thank you!” When I ask what exactly they are thanking me for, the standard reason is, “We want to know. We want to be kind.” By explaining in just a few words what the situation is, it helps create awareness for the public, and safety not just for Joey, but for others who may share some of the same mannerisms and face some of the same challenges.
The Be Kind Vest is not without controversy. I have been told that labeling is cruel. I agree, in some cases it can be, and without a doubt, if Joey was verbal and could speak for himself, I never would consider the Vest. It is absolutely not for everyone who is on the spectrum. But I witness Joey put his Vest on every morning, and I believe he must be able to assess, as I do when someone approaches him with fear vs. compassion.
In addition, there is a label inside with his name and my phone number that can help him in an emergency, which provides me with at least a little peace of mind.
Sadly and shockingly, I have also been told it’s unsafe to allow Joey outside. I truly welcome conversations from anyone who prefers safety to freedom. To us, there is no life within the mandatory restriction of four walls. Joey has the RIGHT to be outside and it’s not his job to make others feel more comfortable. Joey has the RIGHT to be exactly who he is and like what he likes, and move like he moves. He has the RIGHT to be safe and free from harassment. He has the RIGHT to his own space and independence.
To be in the world and do our own thing without people hovering or fearing that we might be mistaken for someone who is dangerous is not what most of us think about on a daily basis. The Vest has allowed us to get a little closer to that.
We made it through our dinner. I laughed, and I truly needed to laugh. I am the full-time caregiver of a man who relies on me for everything. I don’t expect people to understand my world or even empathize with it, but I do want our society to become aware that hiding autism is not beneficial to anyone. Education is how change is made. People want to be given the chance to be nice.
This is my son. He’s Autistic. Be Kind.