Helpful Hint: Autism is neither a gift nor a curse. It’s just a difference. No more, no less. We need to get to that realization as a society.
So, let’s diablogue:
Christina: It was a rush when Adam came up to us in the pews before his show and said, “You’re the people who write the relationship diablogue.”
Ken: It was one of those little surprise treasure moments: “Who would have thought that we would meet one of our followers in Edmonton?!”
Christina: Right. I never put two and two together after we read and enjoyed Adam’s comments on our blog and then I saw the notice about his show, Asperger’s: A Tale of A Social Misfit, on the Autism Edmonton web site.
Ken: It was nice to see an autism advocate at work. I found his material to be very familiar and poignant and simultaneously sad and hilarious.
Christina: Yes, a lot of mixed feelings for you. But for me, it was mostly just delightful because he was so clever and funny—he had both of us laughing hard throughout. Everyone laughed a lot, but I think we had the inside track on some of his jokes.
Ken: I found myself laughing at him and with him as he was able to make me laugh at myself. It was cathartic.
Christina: Yeah, I think it affected me a little in that way too, since you and I struggle sometimes with the hard realities of autism. But his performance also made me like you more. Or EVEN more, I should say!
Christina: Adam was up there being himself for 40 minutes nonstop, and everyone loved him. This rarely happens in quite the same way when you and I are out and about in the world. I mean, sometimes you are killingly funny or insightful about human foibles—especially your own. But it’s often hard work for you, and for me when I’m with you, to sustain lengthy social interaction with others—never mind being funny. Soon into almost any social interaction, we usually run into some kind of social discomfort—even if others don’t notice. So, being with an Aspie who was talking for 40 minutes straight with nothing going socially awry was just…. lovely.
Ken: Tell me more.
Christina: Of course the two situations are not the same: Adam’s crafted show poking fun at social awkwardness and you and I in a unscripted social situation with friends.
Christina: But my point is just the relief and pure fun of that experience. His jokes were funny, but my smile the whole time was a reaction to the glee of being able to totally relax about autism, while talking about it openly.
Ken: Would I be correct by stating that for once, you were able to experience autism from the outside in rather than the inside out?
Christina: Yes! Good observation. For that 40 minutes, autism wasn’t something that I had to work at, or understand, or explain, or adjust to, but just appreciate—just enjoy Adam’s keen insights and his skill and success with his stand-up act. Do you remember that one of the first things I said to you after the show was, “Could YOU do that?!… Please do that!”
Ken: I find that an awkward question. I could not do it the same way as him.
Christina: That will sound cold to some readers! But I know it isn’t to you–it’s neutral, unemotional data.
Ken: I realize how hard it is for you in social situations—and I am grateful that you are there, and not just bolting. You continue to persevere. Of course with Adam, we went to just listen, not dialogue. And that made it easy. Also, listening to another person on the spectrum gave me a message from a different point of view.
Christina: A message?
Ken: Each and every voice from a person impacted by autism is a new and different perspective and adds more to my understanding of autism.
Christina: So Adam’s show helped you understand yourself?
Ken: All information about autism, in its many different incarnation, helps me better understand myself and my place on the autism spectrum.
Christina: What was your biggest response by the end of his show? What feeling or what realization?
Ken: A very positive feeling because there was another person out there advocating and educating.
Christina: Me too. I felt that we were on the same team—him and us.
Ken: Agreed. However, one observation that I have made is that all of us—Adam, Temple Grandin, and the various autism groups we have connected with, are individual voices instead of a community of voices. Separately we’re out there advocating. We’re a bunch of individuals with the same goal—informing and educating others about the autistm spectrum. But we seem to be multiple voices operating individually rather than as a community.
Christina: I see. But “One Voice” isn’t what you’re getting at, I’m sure, right? Everyone does have unique experiences and perspectives…
Ken: Affirmative. There are many communities out there. For example the deaf have a community and a culture of their own. We, as people with autism, don’t seem to have that.
Christina: Right. And what could a community of people who are connected to autism—in any way— achieve that individuals or groups working alone cannot?
Ken: A community could find the middle ground between what seems to be polarized perspectives. We need to find the middle ground between various extreme views and opinions. It is a very complicated and stormy subject, so how do we calm the waters and move forward toward acceptance and understanding? We need to seek the messages that benefit the most people with the most accurate information and the widest possible collection of options. To do that, we need to find the middle ground.
Christina: Yes. We really don’t know much about autism yet. And I have a problem with the idea of polarities: positive and negative takes on autism. For me, for example, I carry both around every day all the time.
Ken: As do I. And within myself, because of that, I have found my middle ground. But my voice alone cannot speak for a community. It is a spectrum. I don’t have the answers, and I don’t think any of us will as long as we keep working alone.
Christina: Right. So, how can this “community” be accomplished, exactly?
Ken: A very good question. I’d like to hear from others out there about how. We need to figure it out together. How do we dialogue and share rather than individually educate and inform?
Christina: Some kind of Autism Wiki? A massive chat room?
Ken: Two great ideas. We need as many as we can collect.
Christina: And then act.
Ken: Agreed. What appears to exist at the moment is many diverse parties who are self-advocating or using the term ‘self-advocate.’ In my view, the difficulty with the self-advocate stance is that we ourselves only have part of the information on autism and ourselves as individuals with autism. If we could form a community of advocates, I believe that we could not only effectively and expeditiously inform and educate more of the public, we could also do the same for ourselves.
Christina: Yes. And can you clarify to what end, in your view?
Ken: To further advance understanding, appreciation, and acceptance of people with differences.
Christina: Right. And I would add, celebrate and value what they have to offer. That’s far too rare.
Ken: I entirely concur with you on that.
Ken and Christina’s concluding message: If anyone sees value in the idea of forming a multi-voiced community of people who are autistic and who are close to autism, please let us know. Share your thoughts, ideas, and suggestions.
Next Post #22 ~ About the movie “Carrie Pilby” –the best autism film we’ve seen that never mentions autism.