Every year, I look forward to the OCALICON autism conference in Ohio. The three days are the one time I get to be with my autistic friends who share my passion for advocating. It’s an absolute whirlwind from start to finish.
Teachers, therapists, and family members come to OCALICON to learn better ways to improve our lives. There are about a dozen autistic adults who attend, and since most of us are good friends, we tend to team up for presentations in different groupings every year.
This year was extra special.
I got to speak with two of my very best friends, Chloe Rothschild and Conner Cummings. We didn’t have an older, wiser mentor leading us as we often do… this was pure next-gen advocacy. The title of our session was: “…but you can talk! Alternative Communication Strategies for Individuals with ASD.” We shared a lot about how typing has radically changed our lives. We didn’t plan for each of us to focus on something different, and we definitely didn’t plan for those three approaches to fit together perfectly… but that’s how it happened.
Chloe showed a lot of examples of her growth in the past few years since she has really taken off with her typing. She was always verbal, but typing has given her a way to show that she knows and understands so much more than most assume. She used videos and screen shots to capture her progress with conversations, self-advocacy, and communicating pain. The audience passed her iPad around so they could get a feel for the app she uses.
Conner talked a lot about the amazing things that have come into his life thanks to his typed words. He didn’t speak until he was 7, and there were all sorts of things he wasn’t “supposed” to do. But he’s done everything from working with his mom to pass Conner’s Law in Virginia to making friends to sharing his passion for photography and being named Advocate of the Year by the Autism Society of America in 2015.
When it was my turn, I talked a lot about how someone who has a big vocabulary can also be completely, entirely misunderstood by the people closest to her and how confusing and hurtful it is. My typing voice has allowed me to help others understand why I may react—or totally withdraw—in ways or at times that look like I lack emotion, empathy, or a desire to connect with others. For me, typing has meant a life that makes me so glad to be me.
Along the way, we also had a few… well, I’ll call them flub-ups.
I’ll “own” my stuff —it started with me frantically writing a last-minute ending sentence or two for our whole group. I didn’t think of it until two minutes before our time started! I finished… barely! I kept making noise and dropping things, too. Conner had never used slides or spoken with other people before, so he was feeling a little nervous. Chloe skipped a few slides to save time, and we had to pause for a brief chat about when I should move to a new slide. We never discussed each person’s plans for where to stand while speaking… in the end, Chloe stood out front, Conner stood at the podium, and I stayed seated in my wheelchair right next to the podium. There was a bit of fumbling with microphones and I wasn’t always sure when to click the next slide.
About halfway through as one of us fumbled with something, I said to the audience, “Sorry… we have been planning this for months, but we planned it from three different states. Last night at 9 PM was the first time the three of us have been in the same room together.”
You see, while we have been great friends for a few years, Conner and I had finally met in person the day before our presentation. My friendship with Chloe started over five years ago, but the first two years of that were all online. Whichever side of the triangle you pick, we all formed our friendships online.
That’s how much of a gift our typing has been for us.
The audience reacted to my confession, but they sort of mumbled all at once, so I didn’t hear their words. I was afraid our flub-ups were distracting, making it hard to follow, or even making us look unprepared. But afterwards, we got very positive responses from people who follow our Facebook pages and happened to be there to see us.
I realized that all those little slips were a good thing. Important, even.
If they noticed all my shuffling around, they must have seen Chloe helping to pick up the things I dropped. They’d have seen her grab a cold water battle out of her bag, too. One result of the disease I have is that my skin can become extremely hot and red. It hurts. My hands were hurting, and getting my ice pack out would have meant opening a long Velcro strip to get into the bag. I’d stolen a slightly cold one from my mom earlier in the session but it was warm, and Chloe somehow thought of that—and fixed it.
If they knew we were still preparing the night before, they also heard Conner open his speech by saying that he had never used slides before, but then he said that he knew if he ran into a struggle that Chloe and I are here for him, just like he is there for us.
If they noticed me tapping out a text on my phone during Conner’s short video of him speaking 21 languages, they would have seen me pass my phone to Conner. The audience was laughing a lot, and I wanted to be sure he knew why—because he was so good at it, and it’s a surprise to see somebody go from one language to another like that.
Seeing our flub-ups meant seeing our friendship in action.
It meant they could see how three friends who had never been together until the night before knew each other better than many people we see in person. It meant they could see how aware we are about the people around us, how much we care for their well-being, and how powerful typed words can be, because they built our friendship.
When the last slide came up on the screen, I read the few sentences I’d frantically written an hour and fourteen minutes before…
“We hope you’ve learned two things today—that everyone has something to say… and that we can be great friends. So, the next time you meet somebody like us… a student, a client, even a new co-worker. Give them a chance just like you gave us today.”
What I didn’t know is that I probably didn’t even have to say it because from start to finish, we did something better—we showed it.
Meet Conner, Chloe and Lydia at:
Images courtesy of Sharon Cummings