An Autistic at IMFAR 2012

my experiences and thoughts


  1. So, after a long train ride to Toronto, a rather jumble of confusion in the subway, and a check in at the hotel, I arrived at IMFAR 2012 on Wednesday, May 16th.  Okay, so I arrived a day early for IMFAR, and from the amount of people standing around chatting wearing IMFAR badges, so did others.  It was extremely exciting for me to be there, at my first research conference.  The following is my experiences with presentations, the conference itself, and my thoughts about it all.  But beforehand, a few things to remember:

    1) I am not a scientist and I am disabled.  I often found myself relying on the tweets and notes that the Thinking Person's Guide to Autism put out because they explained it in ways that I could understand, and they're a lot faster in information processing and typing than I am.  They also could interpret the presenters whom I had trouble following along due to my own lack of understanding and their own presentation style (Seriously, some of them really needed public speaking skills; I understand they're researchers, but they're presenting on behalf of the entire team....)

    2) Most of the studies presented have not been peer-reviewed, and some of them have not been completed yet.  They are summaries of what they have found so far, and current speculation on results.  I tried my best to speculate how the results could potentially affect the lives of autistic people. 

    3) This is my first science conference, and it has been a huge learning experience.  Not just the science, but also learning how to report/live tweet, how to read the schedules, and taking down the names of people I talked to and their abstracts (business cards helped a bit).  Some things I feel I didn't do a good job, because well, I'm sometimes slow at typing and there was a LOT of information to process.  However, where I feel I may be lacking, I feel that Estee Klar and the ladies from TPGA did an excellent job, so I highly recommend looking into their reports for more information. 
  2. Alright, so I arrived a day early, and I roomed with Shannon from the Thinking Person's Guide to Autism.  IMFAR for her started on Wednesday with the Press conference.  Which she kinda fell asleep a couple of times in the middle of typing up her report for TPGA.  Anyways, we went to the opening, and I have to admit, I wasn't paying a lot of attention during it.  I was a bit preoccupied with getting Tweetdeck working, which was an issue regarding an Apple ID using an email address that no longer exists..... I got it all sorted out. 

    I do have to admit, I didn't pay a lot of attention to the opening keynote presentations a lot.  This may have to do with the fact that I had just woken up, had my first coffee of the day and my meds haven't kicked in yet.  So I was mostly talking to my fellow Autistics online instead of trying to follow the science. 
  3. My general reaction to the presenters.  It is definitely an unique experience to have one's brain and genetics being discussed so objectively in front of you. On twitter though, I was having a conversation about going to Autreat and possibly presenting about engaging the autistic communities in scientific research.  I'll go on more about this when I get to talking with the poster presenters in the hall.
  4. There was quite a bit of information on oxytocin during the keynote, in it's levels regarding interaction between parents and their baby.  It took them a while to get to the point of the matter which was that it affects maternal and paternal depression.  However:
  5. Of course, given that this is not peer-reviewed yet, it's hard to be definite about findings.  However, it did lead us to use oxytocin in quite a few jokes throughout the conference. 
  6. About this time, I browsed the poster displays, mainly looking for Shannon after losing her when I went to the washroom and to look for a recharging station for my iPod (something I think I'm not alone in stating that it's something that future IMFAR planners should look into, as well as quiet rooms). 

    I found a few posters that looked interesting, and made a point to interact with the researchers.  I also made a point to talk about getting the autistic community to be engaged with the science research community, not only as stakeholders, but as participants and partners.   I understand that it may be a difficult at times, bringing in non-scientists who need things explained to them, but I think that with patience on both sides that it would be worth it.  I think there's a lot that we can learn from each other, and that by engaging in discussions throughout the research process there will be less misinterpretation about findings and more opportunities to take findings and figure out how to apply them to autistic lives.

    From what I could tell, the researchers that I spoke with where very enthusiastic about the prospect of having autistic people as advisers and fellow researchers.  They were also very open to the idea of a neurologically diverse humanity and that there needs to be more research and supports for autistic women.  Of course, I have to admit that I picked who I was talking to with care; I looked for those who were willing to discuss their studies, willing to explain technical details to a non-scientist and were very open to my thoughts.  I met with a few others whom I think we very much respectfully disagreed (it was very academically polite, quite refreshing even when I realized that the conversation wasn't going anywhere).  Even then, I think that it was productive to interact with them, even for the awareness aspect of things. 

    After spending some time networking, I met with Shannon et al and we went to a presentation about friendship, where we met Estee Klar.  Er...  there were quite a few giggly and eye-rolling moments for us.
  7. Apparently, "abstract reasoning abilities" were one of the things that the researchers noticed were key in making and maintaining friendships.  We weren't terribly impressed by this.