Wednesday, May 30, 2012

IMFAR 2012: One Autistic Attendee's Perspective

Carol Greenburg

The author and Stephen Shore
Evidence-based information and spirited civil debate abounded at IMFAR 2012. Though I thought we all could have benefited from more power outlets in the breakout rooms, I had some terrific conversations with other attendees -- some autistic, some not. I found the formal presentations a bit uneven (I confess the eye-roll Shannon Des Roches Rosa so kindly and repeatedly brought to TPGA readers' attention happened during several panels).

I found a few presentations maddening. One example was Karen Solomon's talk on Autism and Friendship that seemed to boil down to a not-so-revolutionary point that autistic people are interested in making friends. Is the mythology about our anti-social nature really so deep-rooted, even among people who have met autistics, that it was necessary for attendees to fly in from all over the world for scientific verification?

At times like these I skulked in the back of the room (as I often do at conferences); it is a conscious strategy. I need to make quick escapes in case I start to melt down while in rooms packed with people and full of loud microphone feedback that hurts my ears, or in case the speaker pisses me off with theories predicated on assumptions about autism that are at odds with my own 49 years' experience with actually being autistic. If my options are loudly proclaiming, "You're wrong!" or slipping out quietly, I figure the second option is more socially acceptable. While I don't fully understand the concept of conforming for the sake of conforming -- I really don't feel a  need to belong in most settings -- I also know what it's like to speak publicly, and certainly wouldn't want a reaction like the first from one of my own audience members. Sometimes I forget I'm not supposed to have empathy.

One-to-one encounters worked better for me not only because I process information much more easily in a quieter, more personal setting -- but because these discussions felt like a more equal exchange. Rather than feeling like I was being described as a kind of being I don't recognize (despite my alleged autistic incapacity for self-awareness) I felt comfortable chatting with scientists about which theories and data resonated with me, which didn't, and why.

Predictably, I was most comfortable with the people I knew best, friends like Stephen Mark Shore and my beloved fellow TPGA editors-in-attendance Shannon Des Roches Rosa, Jennifer Byde  Myers, and Emily Willingham. On Saturday morning -- during a moment when I am relieved to note Stephen was not present -- there was some commentary from the TPGA contingent on the low-cut shirt I was wearing. Silliness about "the girls coming out to play” ensued. We all laughed, but then I asked my co-editors to tell me honestly whether my clothing was actually inappropriate. On my own, I seriously don't know what constitutes proper attire, demonstrating one of the subtler needs for Neurodiverse partnerships: NT's and autistics can serve as each other's Sherpas in neurologically foreign territories.

Alas, I'm not as socially skilled when left to my own devices. When I accosted poor Simon Baron-Cohen during a conversation he was having with Alex Plank, founder of, I admit I was not on my best behavior. But as often happens at conferences, I was so afraid I'd miss the opportunity to discuss one of my special interests with the only researcher I know of who is addressing it (a possible correlation between poly-cystic ovarian syndrome and autism, both of which I have). I threw my hard-won manners to the wind, introduced myself to Dr. Baron-Cohen and said "I have PCOS. I'm autistic and so is my son. You need to study me." Suave, n'est-ce pas? Nonetheless Dr. Baron-Cohen asked me for my card, and in the end both gentlemen were gracious enough to overlook my social clumsiness -- I think. For all I know they were both furious with me, but all possible indications of anger in their faces, body-language and tone of voice soared high over my head as such nonverbal communication so often does.

As I suspected, I did not get another chance to speak with Dr. Baron-Cohen -- but I was privileged to spend a fair amount of time with the delightful Mr. Plank, whom I have wanted to meet for years. The opportunity to meet Alex and so many of the other autism celebrities with whom I've only had virtual contact over the Internet would have, in and of itself, justified the time and money spent on the schlep to Toronto. It's not just that it's a thrill for me to meet famous people, though that part is exciting; it's also wonderful to spend time with others for whom autistic is a mother tongue.

After my blunt near-demand -- uh, I mean with some delicate and diplomatic encouragement -- Alex Plank very thoughtfully  introduced  me to one of my heroes, John Elder Robison. Perhaps out of nervousness, I offered my hand and what I think passes for a conventional, polite NT greeting: "Hi. I'm Carol." He acknowledged that with a nod with an unembellished but pitch-perfect, context-appropriate, possibly Han Solo-esque response. "I know." I loved that greeting. Concise, accurate, and most importantly devoid of flowery small-talk that initial face-to-face encounters with non autistic people seem to require. What a relief, not to be forced into the conversational dance of social niceties that I have learned to do but have never enjoyed. I found John's first words to me, and John as a person, effortlessly, autistically charming.

IMFAR is a science conference and I am not a scientist, so it wouldn't surprise me if I missed many nuances. Since I'm grateful to scientists for sharing the expertise that comes from years of training and careful research, I would have liked to return the favor in some systematic way. A lifetime of looking at the world through autistic eyes yields a different kind of understanding of autism than the taking and interpretation of data. Not necessarily a greater or lesser understanding, I think, but a different understanding; one that also deserves a place on the stage. I'm hoping to see more of that at IMFAR 2013 in Spain.