On Tuesday night, I went out for Mexican food with four other Autism Hub bloggers. The restaurant was noisy and crowded. I was tired already. Steve worried he’d picked the wrong sort of place. Fresh corn tortillas in San Diego’s Old Town. What could be better? Someone pointed toward the ceiling. Everywhere I looked, there were parrots.
Sometimes I can still forget or discount some of those important-to-most-people scripts—Hello How Are You (and especially Goodbye) are less meaningful to me than to some. I do understand the importance and value of Thank You, however. To remind myself, I usually include a Thank You slide at the end of each presentation. This one was different. This time I put Thank You first. I wanted the attendees to know not only that but why I appreciated the invitation to speak about autism and advocacy. I needed to tell them about the times and the ways I’ve been asked not to speak about autism. Shut Up isn’t a script I ever hope to appreciate or embrace.
There was gluten in my breakfast. It was good. The five of us worked together and separately on our computers. Then it was time to go onstage. It’s time for the show, one of us said. It could have been anyone, I don’t remember. “The show” had become a part of our shared language, the culture of the group. As if we had known each other a very long time.
Do’C of Autism Street talked about the autism “epidemic.” How many people believe there is an epidemic, he asked. Not one person admitted to it. He gave the presentation anyway. And it was brilliant. I’m pretty sure someone referenced Dr. Gernsbacher’s work in every session I attended. The day’s most popular question: How do you spell that?
About a year and a quarter ago, I started writing this blog. I saw it as an accommodation of sorts, one that would allow me to express some things I had not been able to get across to people in my life. Writing is my first language, the one that allows me to say what I really mean in a way that most people can hear. Somehow, this has led to people asking me to speak at conferences. Somehow, I have found I could do that. Not smoothly, not conventionally, and certainly not without PowerPoint, but as a person with something to say, nevertheless.
There are a lot of points I could make related to this. I’ll stick with this one for now: to all who have supported me in this work, thank you for presuming competence.
A woman at the conference talked about her brother, a man who doesn’t use words to communicate, but makes other kinds of sounds. Not long ago, she and others in her family decided to presume competence by behaving “as if” he understood and as if his sounds and actions carried meaning. When she asked him if she was on the right track, he stopped making sounds and took a very long, very deep breath. Yes. The sister heard Yes. Another deep breath. For the first time, maybe the first time ever, in more than 30 years, someone had heard.
Some people had a hard time understanding why anyone would be opposed to neurodiversity, a concept promoting respect for all human beings regardless of differences. We talked a lot about functioning labels, and how believing these not to be accurate descriptors of abilities does not in any way imply that all autism is the same or that all autistics have the same needs. This seemed not to be terribly controversial or difficult for most people to grasp. That was refreshing.
I was having a “good speech” day. Was I in danger of “losing my label?” Maybe…except for the stimming, the toy bird tucked in my shirt pocket (thanks, Burwick), drawing of squares, mumbling, pacing, trilling, minimal eye contact, avoidance of sunlight and light conversation... No, it wasn’t that good a speech day.
Fortunately, there was no need to pass (not that I’m very inclined to try unless I feel very threatened). After all, I wasn’t the only one repeating a single word. Respect. I heard it time and again until the entire conference became a concert of shared echolalia.
The way we supported each other, each one taking the lead in turn as areas of strength and need came into view, each one stepping up naturally to offer technical assistance, emotional support or a ride to the airport as needed, this is a big part of what I will remember about this week. Support doesn’t always need to be complex or difficult. As we accepted and offered these small accommodations, we grew more powerful as a group and (at least from one perspective) individually.
Did we make a difference in anyone’s life? I can’t be sure, except in the case of my own. As I enjoyed some social time with a group, and shared work as part of a team, able to lead and to follow as needed, I became aware of a flexibility I have rarely known. As if development truly were lifelong, as if acceptance truly could promote growth. Here in the company of friends, I took a deep breath and enjoyed the ride.
For a much more thorough description of the conference presentation, be sure to read Steve's post.