By Betsy Hicks-Russ
Four years ago, while living in San Francisco, my 24 year-old son Joey began an obsession with bicycling. Joey, profoundly living with autism, discovered a freedom and independence on the bicycle that he had never before experienced, and I wanted to do everything possible to make this obsession a healthy and safe one. But, as one can imagine, even with wonderful city paths aggression would target my son, and not just from drivers, but mostly from other cyclists.
“Move over,” was heard every few minutes, as was honking and shouting. He was not causing danger, but he didn’t understand courtesy, and for that, our rides were exhausting and apologetic. I had to find a way to quickly convey to others that he needed special consideration, and was not being intentionally oblivious.
One day at the local bike store I picked up a bright orange vest. I stopped at the hobby store and bought iron-on letters. “Autistic” was all it said on both sides. I slipped it over his jacket and we took off on our next adventure. What happened was nothing short of a miracle. We became the recipients of smiles, thumbs ups, shouts of “nice job!”, people clearing the path, softly passing with a wave ... it was a joyous experience that left me in happy tears. With not a single angry remark directed at him, Joey’s huge smile remained on his face.
Our life was about to change in ways I did not think possible. One of Joey’s comforting mechanisms is to stuff his arms inside his clothing, essentially pinning them down. Additionally Joey had a habit of chewing on his sleeve. His jackets would often look horribly worn because of it. Combined with his aversion to being shaved and, I admit, he looked disheveled, even a little shabby. People would stare with revulsion, cross the street when they saw him coming, or even go so far as to ask us to leave their place of business. We decided to see what would happen if he wore the vest each time we went out.
And ... life became instantly easier. People still stared but it shifted from disgust to empathy. I received criticism (all from the autism community, never from outsiders) that I was improperly labeling him. I strongly disagree. Joey is not forced to wear his Vest, and autism is not something to be ashamed of. However, I agreed that just saying he was autistic could use some softening. I decided to add two words as a call to action....Be Kind.
My passion kicked in and I hired a seamstress in San Francisco to make 250 of the Vests. I created a 501c3 and named my project Autism Odyssey. I added a label inside the Vest to put a name and phone number, as I was always concerned what would happen to Joey if we got separated, or something happened to me.
Autism Odyssey’s Board of Directors understood the Vest wasn’t for everyone and many would not be comfortable wearing one, so we developed an additional vest to be worn in conjunction or alone; Caregiver - Be Kind. One of our active board members, Akiko Nelson, came up with the idea after her son’s caregiver had the police called on him several times while trying to assist her son who was having a breakdown. The Caregiver Vests are of great benefit when wore in conjunction with the Autism Vest to establish the connection.
Autism Odyssey has already donated dozens of our Vests, made possible through private donations. Surprisingly and wonderfully, I received many requests from the speaking autism community. One of my most memorable came from Louie, who gave me permission to use his name. Wrongly arrested twice, Louie endured countless episodes of being bullied on the streets because of his stimming and inability to vocalize quickly. He said the Be Kind Vest has completely changed his life and he’s proud to wear it.
In addition to the Be Kind Vests, Autism Odyssey just released Be Kind Forms. As parents and guardians we all know the constant training we must do each time we get a new caregiver, a new neighbor, or move to a new school. These easy to fill in forms can be printed out to help make the education of others a breeze. There are five forms; Caregivers, Neighbors, First Responders, School and a special form for Food Allergies/Intolerances. These forms can be started online, saved, and finished later. As you fill them out, you are given options to assure confidentiality.
The word “odyssey” means “epic adventure”. I want my son to live each day free to be himself, creating his personal odyssey. After three decades, I’m so fatigued from having to explain, and even apologize for, his actions. I have worked in the autism field for decades and still I stumble in recognizing special needs.
I hear so many words of appreciation from those using the Vests, but also from those wanting a better understanding of autism. It is heartening. The other day, as Joey and I were grocery shopping in our Vests, an elderly woman stopped me. “Thank you,” she said, “for giving me the opportunity to be kind.”
Betsy Hicks-Russ is the director of Autism Odyssey; a 501c3 based in Bellingham, WA. She is the founder of The Joey Bar, a nutrition bar made by adults living with autism. More info:
AutismOdyssey.org
TheJoeyBar.com
Facebook and Instagram @AutismOdyssey
TikTok - Betsyonthego