Looking back at IMFAR from an ASF Stakeholder Travel Grant Awardee

By Matt Carey

IMFAR has come and gone.  Thanks to the generosity of the Autism Science Foundation, I was able to attend with a stakeholder travel grant.  Since the ASF has this program, I thought it would be good to describe my experiences for future stakeholder newcomers who may go to IMFAR.  The short version: it’s overwhelming.  In a good way.

My own experiences may be different from many people who might go to IMFAR on a stakeholder grant.  First, I am used to scientific conferences.  I’ve attended and presented at many in my own field.  Also, I was not only observing. I was attending press events as I was writing about IMFAR for here at ASF and the Left Brain/Right Brain blog. Lastly, I had a poster presentation to give. But I still think it’s valuable to give some idea of what to expect for future stakeholder attendees.

First, consider the structure of the conference.   You can get an idea by looking through the program book.  Most of the time there are three talks going on, in three different rooms, plus poster sessions.   Most of the talks are 15 minutes.  That’s 15 minutes for the speaker to set up, talk and answer questions.  They go by fast and the researchers don’t have a lot of time to give much background.  It’s impossible to see everything.  It’s also very easy to saturate, to feel that you’ve just seen all the information you can handle.

So, what tips would I give someone attending IMFAR for the first time?  The first answer is easy: look for the talks on subjects that really interest you.  For example, if you are interested in issues related to adults or in the causes of autism, check the program for sessions and talks on those topics.

Given how busy the daily schedule is, it’s great that IMFAR starts out each day with a single session.  This is held in a room big enough for all 2,000 attendees.  These include introductory talks, special speakers and the keynote talks.  This year Tom Insel, director of NIMH and chair of the IACC, Autism Speaks and the Simons Foundation gave morning talks.  Keynote speakers were Eric Courchesne, Ph.D., Ricardo Dolmetsch, Ph.D. and Professor Annette Dionne Karmiloff-Smith.  These morning sessions are great since the speakers have the goal of speaking out to the general audience, and they have the time to do it.  Instead of 15 minutes for a regular talk, keynote speakers have 1 full hour to speak.

Another set of talks to look out for are the Invited Educational Symposia. These are talks on subjects and by speakers the conference organizers specifically wanted to emphasize. These talks are 30 minutes long, giving the speakers the chance to give much more background and go more in depth. I attended one on Characterizing Cognition In Nonverbal Individuals with Autism: Innovative Assessment and Treatment, which was excellent. My only regret is that I left before the last talk, CCNIA Intervention: Spoken and Augmented Means of Communication, so I could watch some speakers in another session. And that’s the frustration of such a conference: you can’t see everything. If you are an optimizer like me, that makes it tough as you want to make sure to maximize every opportunity. The flip side of this is that you are likely to find something good at any time, in a poster, talk or talking to people in the halls.

I really like poster sessions. Where the oral presentations are fast paced, poster sessions give you the chance to go over the research 1:1 with the researcher. If you haven’t been to a conference like this, here is a picture of ASF Post Doctoral Fellow Dr.  Jill Locke from the University of Pennsylvania presenting her poster to give you an idea of what this is like:

Poster sessions are scheduled for up to 4 1/2 hours, but each speaker is only required to be in front of his/her poster for an hour. So if you come outside the scheduled time you will be able to read the poster but you may not be able to speak with the researcher. But the upside for posters is that they can be more interactive than a talk. The people from TeachTown had a computer demonstration available, for example. The big advantage to posters is the chance to speak directly with the researcher about the work. One particular interest of mine is research outside of the U.S. and Europe. As an example of this, I spent a good time speaking with a researcher from Tsukuba. Since his work was a poster, I had the chance to ask more general questions about research in Japan than would have been possible in an oral presentation.

There is a saying that most of the important exchange of information at a scientific conference happens in the hallways. Outside of the lecture rooms people can talk more at length and about differing subjects. Where I had planned on arranging formal interviews with researchers, I instead found myself walking the halls with people and asking questions. I found the researchers at IMFAR to be very open to talking. Tom Insel, director of the National Institute of Mental Health (NIMH) is as friendly in person as he appears from videos of IACC meetings. Eric Courchesne is self described as “genetically predisposed to have a good disposition” and seemed to always have a smile on his face and an enthusiasm for research his team and the others were doing. One warning, if you want to walk the halls with Dr. Courchesne, be ready to walk fast. He’s a guy on the go. Antonio Hardan of Stanford and David Mandell of U. Penn were also very open and friendly people.   Sometimes people are busy networking or getting somewhere they need to be, but I found so pretty much anyone I approached was willing to talk.  I don’t know if it helps, but I told a lot of people, “thank you” for the work they are doing.

IMFAR held a “Stakeholder Network Luncheon” on Friday. This was a great chance to meet other stakeholders as well as to hear more about the conference. We were treated to short talks from speakers including John Robison, Peter Bell, and Ricardo Dolmetsch. I met fellow ASF stakeholder grantees M.C. McGrath, Mark Fornefeld and Max Rolison.

It’s important to take some time to enjoy one’s self at a conference.  It helps to counter the overwhelming feeling of the flood of information. IMFAR had coffee and bagels every morning before sessions started. A great chance to chat, or collect your thoughts before the day starts. One day, in the press room, I heard that some of the people from Autism the Musical were at the hotel. Somehow I didn’t put it together that they were the surprise entertainment at that night’s reception. It was a very cool event. I hope to see video of it on Wrong Planet’s YouTube channel sometime soon.

Sometimes the best things happen serendipitously. After the press conference, a group formed in the press room and eventually spent a long time talking in the bar. This group included John Robison (author of Look me in the eye), Alex Plank (of WrongPlanet.net) and the team he had filming the conference, fellow writer and ASF stakeholder travel grantee Shannon Des Roches Rosa, science writer Steve Silberman and Stephen Shore (professor at Aldephi, author and IACC member). The conversation was lively. At one point I wish it were more quiet so I could have heard more of Stephen jamming away on Shannon’s iPad’s piano app.

Some of my best times at the conference was spent Saturday, outside of the talks, just sitting down talking to Mark Fornefeld and later having lunch with M.C. McGrath, both ASF stakeholder travel grantees.

Of course, it was great to meet the ASF team who were there: Alison Singer, Jonathan Carter, Dawn Crawford and Max Rolison.  Alison has put together a good team.

I planned to write more about the conference as it was going on. As with many battle plans, this one didn’t survive first contact. I will write more about the science at IMFAR in the next article. For now, though, I thought getting the impressions of IMFAR would be good. It wan’t just amazing science, it was an amazing experience.

ASF Strongly Supports Combating Autism Reauthorization Act of 2011

The Autism Science Foundation (ASF) strongly supports the Combating Autism Reauthorization Act of 2011 (CARA) introduced today by Senator Robert Menendez (D-NJ) and Senator Mike Enzi (R-WY) in the United States Senate and by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA) in the United States House of Representatives. 

The new bill reauthorizes the Combating Autism Act of 2006 (CAA), which has played a critical role in advancing autism research and treatment.  The original CAA, set to sunset on September 30, 2011, expanded federal investment for autism research through NIH, increased services, diagnosis and treatment through HRSA, and enhanced surveillance and awareness efforts by the CDC.  The CAA authorized nearly $1 billion in federal research spending over five years—increasing autism research spending by almost 50 percent.  This research has led to improved understanding of the causes of autism and has helped us begin to develop new interventions.  Additionally, the research funded through CAA has increased the ability of professionals to more properly screen, diagnose, and treat individuals with autism. The Combating Autism Reauthorization Act of 2011 ensures that the programs established under the original law continue for an additional three years, including CDC surveillance programs, HRSA intervention and training programs, and the Interagency Autism Coordinating Committee (IACC).

The Autism Science Foundation strongly supports this new legislation and urges all members of Congress to act swiftly to pass it into law.  We thank Senator Menendez, Senator Enzi, Congressman Doyle and Congressman Smith for their continued focus on the needs of individuals with autism and their families. We look forward to continuing to work with them and the broader autism community to ensure passage of this important legislation.  At an IACC meeting earlier this year, the Obama administration pledged to support CARA and to sign the bill into law upon passage.

The Autism Science Foundation is 501(c)3 public charity. Its mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

Scoring Goals for Autism Adult Soccer Tournament Set for Saturday, June 4 in Philadelphia

Join us on Saturday, June 4 for our first-ever Scoring Goals for Autism adult soccer tournament in Philadelphia, PA. We’ll be raising money for autism research including Dr. Jill Locke and mentor Dr. David Mandell‘s research which is currently being conducted at The Children’s Hospital of Philadelphia’s Center for Autism Research.

A BIG thank you to volunteers Erin Lopes and Tim Bak who are organizing the tournament and are parents of a 11 year old son with autism. Raising funds for ASF represents hope for their family and every family who has a child with autism. “We wanted to organize an event where people could get a good workout, have some fun and raise some money for autism research,” Lopes said. “Funding autism research is a critical step in finding the answers to why so many children have autism and what treatments will help children living with the disorder.”

Even if you can’t come and play with us in Philadelphia you can make a donation to support an individual playing in the Scoring Goals for Autism tournament. Donate today!

Scoring Goals for Autism tournament information:

A special pre-game for children with autism will open the tournament from 11 a.m. – noon. To sign-up your child for the game contact Dawn Crawford at dcrawford@autismsciencefoundation.org.

Scoring Goals for Autism is proudly sponsored by the Starfinder Foundation, the Philadelphia Independence, the Philadelphia 76ers, Welsh Subaru, Pearsox, the Baggataway pub in Conshohocken, and the Ugly Moose pub in Manayunk.

The tournament is expected to draw four womens teams and four mens teams for fast-paced small-sided games. Individual players who raise the most money for ASF will win prizes including tickets to Phillies, Philadelphia Independence, Philadelphia 76ers games and more.

For more information about this event contact Dawn Crawford at dcrawford@autismsciencefoundation.org.

Interview with John Robison

Alex Plank of WrongPlanet interviews self-identified Aspergian John Elder Robison, author of Look Me in the Eye and Be Different, at IMFAR 2011. Robison discusses the use of technology to develop new autism treatments and gives insight into his new book Be Different.

iPads for Autism Workshop to Benefit Reach for the Stars Learning Center

Where: The Soho Gallery for Digital Art New York, NY

Autism and iPad advocate Shannon Des Roches Rosa leads this in-depth workshop on the the vital need for iPads for people with autism. Ms. Rosa will demonstrate how iPads can be a dynamic and cost-effective learning tool for autistic children and adults, and will discuss the additional benefits of the iPad as well as fundraising, research, accessories, and – of course – apps.

So if you’re considering an iPad for your loved one with autism, already have an iPad but aren’t sure how best to use it, or just want to talk about all things iPads & autism, this is the workshop for you!

Workshop proceeds benefit Brooklyn’s Reach for the Stars Learning Center, “dedicated to the education of children with autistic spectrum disorders utilizing every possible tool to further their development.”

Event URL: http://www.brownpapertickets.com/event/176035

Continue reading “iPads for Autism Workshop to Benefit Reach for the Stars Learning Center”

Brain and Tissue Donations Needed for Autism Research

LeftBrain/RightBrain blogger and ASF IMFAR 2011 travel grant recipient Matt Carey writes about the need for post-mortem brain and tissue from individuals with autism:

Thinking about death is just no fun. Plain and simple. It isn’t fun to plan ahead for a future where you or a loved one is no longer here. Many of us avoid planning for death because it is so hard to think about. But we should face those fears. Depending on your circumstances, you may either be a person being supported, or you may be supporting others. Obviously, some form of financial planning is key, especially within the disability community. Shannon Rosa discussed this topic at The Thinking Person’s Guide to Autism.

When Eric Courchesne spoke at IMFAR, he started out by noting how there are very, very few sources of postmortem brain tissue. There are really only a few dozen.

To continue reading, click here.

Dr. Eric Courchesne on the Developmental Neurobiology of Autism at IMFAR 2011

Reported on by Shannon Des Roches Rosa. Shannon is an editor of the Thinking Person’s Guide to Autism and an Autism Science Foundation IMFAR Travel Grant Winner.

 Eric Courchesne is a leader on brain structure and abnormalities in autism, and has been pursuing research into autism before most IMFAR attendees “knew what autism was.” Dr. Courchesne had polio as a child, which left him unable to walk or stand. Medical intervention gave him the ability to walk without braces, and allowed him to eventually become a nationally ranked college gymnast. So, he has a personal stake in overcoming disability, and sincerely believes medical science can make a difference for kids with autism. He dedicated his IMFAR 2011 presentation to his mother. 

You can find the rest of the blog post here:

Dr. David Mandell on the economic struggles of autism families

Alex Plank of WrongPlanet sits down with ASF Scientific Advisory Board member David Mandell at IMFAR 2011 to discuss his recent research, which focuses on how parents and communities care for people with autism.

David Mandell is an Assistant Professor of Psychiatry and Pediatrics at the University of Pennsylvania School of Medicine’s Center for Mental Health Policy and Services Research and Associate Director of the Penn/CHOP Center for Autism Research. You can read  the rest of his bio here.

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