My IMFAR poster

1 Jun

I was fortunate enough to attend IMFAR this year on an Autism Science Foundation stakeholder travel grant. This is the second year of the program, and I hope that they continue it. Given that, I thought it would be valuable to write about my day-to-day experiences: Looking back at IMFAR from an ASF Stakeholder Travel Grant Awardee

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:

Parent Reported Status and Expectations for Their Autistic Student Children:
An Analysis of the 2007 National Household Education Survey

Here’s the abstract:

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.
Objectives:

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:

Imfar poster 2

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.

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10 Responses to “My IMFAR poster”

  1. Shannon June 1, 2011 at 07:17 #

    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.
    http://thinkingautismguide.blogspot.com/2011/05/imfar-2011-dr-eric-courchesne-on.html

  2. RAJ June 1, 2011 at 16:25 #

    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:

    http://www.autismeurope2010.org/green_room.html

    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.

    • Sullivan June 1, 2011 at 17:51 #

      RAJ,

      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.

  3. Shannon June 1, 2011 at 17:59 #

    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.

  4. RAJ June 1, 2011 at 21:48 #

    ‘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,

    • Sullivan June 1, 2011 at 22:32 #

      RAJ,

      I did. Apparently you didn’t understand my response. You also have left out the part of your comment I was directly responding to:

      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.

      That’s the way conferences which cover latest research, especially work in progress which is much of IMFAR, work. Making every session available online is impractical and unwarranted. Tell me, how do you put hundreds of poster presentations into online video?

      Also, you and I have very different ideas of what constitutes “nearly every aspect of interest”:

      Last years Autism Europe Conference included nearly every aspect of interest to parents, researchers, clinicians and researchers thoughout the world.

      A lot of good work at that conference. Not “nearly every aspect of interest” to me, though. I’m glad it met your needs.

    • Sullivan June 2, 2011 at 19:56 #

      RAJ,

      I realize I should have pointed out that there is an effort underway already to bring more of IMFAR to the public. I don’t know how formal it is yet, but don’t be surprised when it happens.

  5. Joseph June 2, 2011 at 16:33 #

    84% of the general population gets As or Bs? Doesn’t that mean the average grade is well above B, and possibly A?

    • Sullivan June 2, 2011 at 19:55 #

      Joseph,

      I referred to that as being rather like Lake Wobegon, where “all the women are strong, all the men are good looking, and all the children are above average”

  6. Prometheus June 2, 2011 at 21:14 #

    RAJ complains:

    “Parents, clinicians, reserachers [sic] 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 [sic] all the presentations and often have to chose which presentation they will attend.”

    Ah! But choosing is part of being an adult. If IMFAR is truly a scientific conference, then not all presentations would be appropriate or useful to the average parent. If IMFAR is like the many scientific conferences I attend, clinicians and researchers will also find that not all sessions are interesting or relevant to them. And, of course, you have the poster session, which don’t lend themselves well to videography.

    While it would be nice if all of the IMFAR sessions were recorded and available on-line, that increases the expense of the conference. Videographers and editors don’t work for free (or, if they do, the product isn’t always very pretty). Of the scientific conferences I attend, I can think of only one that records all of the sessions.

    More common (but far from universal) are conferences that publish transcripts of the sessions (sometimes with slides). I find those even better than video recordings, as I can jump back and forth in the talk more readily in a transcript than I can in a video. Maybe the IMFAR should try going that route, instead.

    Why RAJ felt the need to disparage the IMFAR conference because you can’t attend (in person or via video) all the sessions is beyond my understanding. Based on this and his other comments, I get this picture of him as an elderly contrarian, grumpily complaining about everything that don’t fit his idea of “how things oughta be”.

    The IMFAR model is the norm for scientific conferences. What RAJ is describing is rare in scientific conferences but is common in conferences, like the “DAN!”, that adopt the “trade show” conference model. In “conferences” like the “DAN!”, you need to have recordings of the sessions because none of it will ever be published in the scientific literature.

    C’mon, RAJ – turn that frown upside down! See the glass as half-full! The IMFAR is a great conference and if you can’t see it all, well, you just have to pick what is the most interesting to you and wait for the rest to be published.

    Prometheus

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