I have to admit, my experiences were probably out of the ordinary for a stakeholder travel grantee. I hope that many or even most will be people who are not familiar with scientific conferences (I have attended several over the past 20 years). I do hope that more bloggers attend and report back, though, so experiences with the press conference could be of value.
One aspect of my IMFAR visit that I didn’t discuss in detail on the ASF blog was that of presenting a poster. My topic was:
Background: National surveys provide a good source of information on autistic populations within the United States. The 2007 National Survey for Child Health was used to estimate autism prevalence (Kogan 2009), as well as to make comparisons of such family factors as the divorce rate (Freedman 2010). A similar survey, the National Household Education Surveys Program (NHES), is an opportunity to explore comparisons between parent-reported factors involving the lives and education of autistic and non-autistic students.
1. Compare educational placements and percieved educational abilities between children with (a) parent-reported autism spectrum disorders (ASD) and (b) children in the general population.
2. Explore parent expectations for the future of their ASD student.
Methods: Data used for this study were taken from the National Household Education Surveys Program (NHES 2007). NHES had 10,682 total respondents, representing students ages 3 to 20 years. 127 parents identified their child as having autism and an additional 37 identified their child as having pervasive developmental disorder.
Parent responses for this group (164 total, or about 1 in 65) were compared to those of the parent responses within the general survey population.
Results: 75% of students with parent-reported ASD have an Individualized Education Plan. Parents reported that their ASD students are more likely to have repeated a grade (23% ASD vs. 9% without) or be home schooled (5.5% vs. 2.9%) or be in a program that does not assign letter grades (37% vs. 22%). ASD students were reported as less likely to be in private school (9.6% vs. 13.4%) and to have moved in order to attend a specific school (17.7% vs. 21.6%). Parents are generally satisfied with their child’s school (82.2% rated somewhat or very satisfied), but less so than for non-autistic students (90.7%). Of those children who receive letter grades, the number of ASD students getting “mostly A’s” or “mostly B’s” is high (79.6%), but less than the general population (84.1%). Parents of students in middle school or above were asked about their future expectations. The fraction of ASD students whose parents’ expectation were that their child would receive less than a high school diploma is much higher than for the general population (6.3% vs. 0.6%). However, by far the majority of parents expect their autistic student to receive a high school diploma, with most expecting at least some vocational school or college to follow. Most parents in the general population expect that their child would achieve a 4-year or graduate degree (72.7%). While the parental expectations for ASD students to obtain a bachelor or higher degree is much lower (28%), this is still a notable fraction of the autistic population.
Conclusions: Parents report that their ASD students lag behind the general student population in academic performance. Parent report high satisfaction with their schools, but at a lower level than the general population. Many parents of ASD students report high expectations for their ASD students. Services research should consider how to support individuals with ASD with a broad spectrum of abilities and expectations.
Here’s the actual poster:
If you are unfamiliar with a poster presentation, here’s the short version: You take your study and write it up on a 3’ x 4’ piece of paper. You stand in front of the poster and discuss it with the people who are interested.
I was very lucky in that I was right by one of the doors, so a lot of traffic came my way. That traffic included a few people who knew me from my blogging here. One reader came up and said “Hi Sullivan!”. A group from Kennedy Krieger stopped by and told me they wanted to take a picture of the poster to show their colleague—who I was citing in my work. I don’t think they are used to people saying, “You guys from Kennedy Kreiger rock!”, but they got it from me. I spoke with a researcher I know who worked under Ami Klin (formerly of Yale, now at Emery), whom I got to meet there too.
I was scheduled for the 10am time slot on Friday. This means I had to duck out early from Eric Courchesne’s keynote talk. I spoke with him later and he asked me about his talk. I told him it was very good and he responded with the killer question: what did I think of the last 15 minutes? I had to admit that I was standing in front of my poster then and missed his conclusion. To which he responded (with a bit of a mischievous grin, if I may say): you missed the best part! as he disappeared through a door.
I was scheduled for 1 hour. Posters can be a bit tedious when you stand there waiting for someone to talk with. I was lucky in that I went pretty solid for 2 hours.
A poster presenter needs to have the 1 minute “walk through” of the study. Mine was basically this: A lot of work has been focused on the National Survey of Children’s Health (NSCH). This is the study which formed the basis of one of the “autism prevalence is 1%” last year. There didn’t seem to be much focus on the educational survey which I presented, and I was there to make it known that there was this other data source. I didn’t dwell too much on the prevalence (1 in 65) or the fact that the prevalence was basically flat with age (Figure 1). What I found interesting was the fact that there is a very wide range of parental reports of abilities, difficulties and expectations for their kids. Yes, by every measure shown, autistic students are more likely to be in ungraded classrooms, get lower grades, have reports of behavior problems and the like. But a notable fraction are being parent-reported as getting “A’s”. Most parents expect their children to graduate high school (over 90%) and many parents expect some college or even graduate school. Those last questions were only asked of parents of children in middle school and above, so they had some basis to make the predictions.
I pointed out that there is no way to see how realistic the parent’s expectations were (and that there was a far more rigorous study being presented at IMFAR on the transition out of school for autistic students—that of Paul Shattuck’s group in St. Louis—and that expectations exceed reality). The first person to look at my poster noted that 30% of parents of children overall (the general population) were expecting their kids to go to graduate school, which shows that all parents are proud of and optimistic about their children.
There was a wonderful presentation on the poster next to mine by a team from Georgia Tech. I hope to include that team’s work in a later post.
I am very grateful that IMFAR accepted my abstract. I went in with the idea that my poster might be the least interesting study presented. In the end, if I do say so myself, I held my own. Sure, it’s not earth shattering research. But there were interesting points. For me it was a great experience, even if it meant a flashback to my grad school days of standing in front of a poster.
You looked quite dashing in front of your poster, and presented your material with aplomb.
Parent reporting -- and the optimism / subjectiveness / unreliability thereof -- was a recurring element in several IMFAR sessions I attended.
For those last 15 minutes (as well as the previous 45) of Dr. Courchesne's talk: it was transcribed on the Thinking Person's Guide to Autism.
Parents, clinicians, reserachers and those interested in all aspects of autism research are not well served by the IMFA type conferences. Multiple presentations are held simultaneously and no one can atten all the presentations and often have to chose which presentation they will attend.
The Autism Europe Annual conference has it right. every presentation is recorded and all presentations are available in full and online:
Last years Autism Europe Conference included nearly every aspect of interest to parents, researchers, clinicians and researchers thoughout the world. The presenters as opposed to IMFAR's presenters which are primarily a 'who's who' of behavioral geneticists, included a who's who of the most well known autism researchers acros all fields of interest and included Simon Baron-Cohen, Eric Fombonne, Sir Michal Rutter, Catherine Lord, Sally Rodgers, Fred Volkmar and many many others.
IMFAR could take a clue from Autism Europe and include complete video presentations of all the presentations in full since no one who attended the IMFAR Conference could possibly have attended all the presentations.
what a strange complaint. IMFAR has far too much research to provide for single sessions. It would take a month or more to do so, in my estimation. Would the autism communities be served by having less research ongoing and presented?
Last years Autism Europe Conference included nearly every aspect of interest to parents, researchers, clinicians and researchers thoughout the world.
We differ in our scope of what constitutes "every aspect". I would prefer a broad spectrum of research ongoing.
IMFAR provided audio recordings on the abstract pages of all the sessions I attended, generally within a day of the talk itself. You have to be an INSAR (IMFAR host org) member to download the recordings, but conference attendees were given the opportunity to fold that $100 membership fee into their registration fee.
'what a strange complaint. IMFAR has far too much research to provide for single sessions. It would take a month or more to do so, in my estimation. Would the autism communities be served by having less research ongoing and presented'?
Did you even read the post Sullivan? Autism Europe provides online videos of every presentation includin repsentations that held simultaneously. The complaint is that IMFAR doesn't present free online video presentations which would be available not only to the wider community but even to those who attended the conference. Autism Europe does, no reason why IMFAR couldn't,