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IMFAR 2012: One Autistic Attendee’s Perspective

Carol Greenburg www.thinkingautismguide.com 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…

Autism in Ireland: Protesting Service Cuts

Shannon Des Roches Rosa www.thinkingautismguide.com Updated extensively on 5/28, as the photo in question was removed from all TPGA pages by request of the parent and the photographer, so the photo-linked TPGA Facebook thread this post referred to was also removed — and now context is needed. -SR This photo may not mean what you think it means. So let’s get that cleared up, because the Irish government is putting autism families and people with disabilities in dire straits, and that’s where we need to focus. The photo was of a little boy at a protest regarding the Irish government’s cutback of in-home support services (called entitlements in Ireland) holding up a sign with his own photo and the statement “If you take away my entitlements, can you take away my autisim [sic]? There’s a chance that, like me and like many other literal thinkers, you see this sign as…

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IMFAR 2012: NIH and IACC Overview

Susan Daniels Acting director of office of autism research coordination at NIH (National Institutes of Health) Involved in strategic planning & research at IACC (Interagency Autism Coordinating Committee) —-   Dr. Daniels spoke at IMFAR about the IACC and the NIH, on the autism research landscape, and IACC research and data sharing. Any errors or omission are on yours truly. -SR IACC (Interagency Autism Coordinating Committee) IACC background: formed under Combating Autism Act of 2006 (CAA) with the goal of accelerating the pace of autism research, and coordinating it as well. The CAA expired Sept 2011, but has been reauthorized. The IACC consists of Federal and Public members (click photo to enlarge): List of IACC members, new members are red The IACC Mission (from the official site, iacc.hhs.gov) Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.
 Facilitate the exchange of…

IMFAR 2012: Evans – Structural Connectivity in Neurodevelopment

Dr. Evans was a keynote speaker at IMFAR 2012. His talk centered around the work that is being done based on the data collected from the longitudinal study of normal brain development at NIH. He spoke extensively about correlates that can be read from the data, for example, the relationship between cortical structure and things like IQ and testosterone levels. It would be impossible to capture the incredible amount of information in 140 character bites, but as an outline, we hope it can give you a starting point for further research. Errors, omissions and misspellings are mine.-JBM

IMFAR 2012 Roundup: Genetics of Autism and Animal Models

Emily Willingham www.ThinkingAutismGuide.com Caveat: All findings discussed here were presented at a conference and have not undergone peer review. —- What is the use of animal models? I understand the use of animal models like mice to figure out how gene changes affect outcomes in a whole animal, rather than, say, in cells in a dish. I’ve used them myself. Knocking out a gene of interest in a mouse strain, applying an environmental exposure of interest, observing the behavior of the mouse involved — these tactics can be revealing, sometimes. Say a mouse with a nonfunctioning partner in a gene pair shows a specific behavior — like vocalizing less to its mother — and maybe we can interpret that in human terms as being inhibited social communication and assume the gene in question is involved.  The idea is that observing changes linked to the absence or overabundance of a particular…

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IMFAR 2012: Highlights & Takeaways

Shannon Des Roches Rosa www.ThinkingAutismGuide.com TPGA editors at IMFAR 2012 We had a great time at IMFAR; it was important that TPGA be present, given our mission to support evidence-based autism information. I wish more autistic people and people whose lives include autism — personally or professionally — would or could attend. We’ll keep posting summaries and insights for those of you who couldn’t go. Here are my general observations and takeaways. IMFAR 2012 ‘s goal was to present the newest research conducted over last year, with a particular effort to include presenters from outside autism science whose research overlaps with or has implications for autism. This may be why the science often, though not always, seemed a bit softer than 2011. With the result that in some panels, I would just … stop typing after a while, because it was clear the material would not be terribly useful to…

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IMFAR 2012: An Update on the ASD DSM-5 Recommendations

Sue Swedo M.D.  Chair, DSM-5 Neurodevelopmental Disorders Workgroup An Update on the DSM-5 Recommendations for Autism Spectrum Disorder and Other Neurodevelopmental Disorders We spoke with Sue at length both at the IMFAR Stakeholder’s lunch, and after her IMFAR talk. Any errors or omissions in this summary of her talk are on TPGA. -SR —- The goal of the new DSM-5 is clearer criteria, changing all PDDs (Pervasive Developmental Disorders) to ASDs (Autism Spectrum Disorders). This is group’s thoughts on what they are and are not concerned about. In addition to 11 full time members of DSM 5 task force, they have 2 dozen advisors. It’s been a five-year process. She’s deeply appreciative to all of her colleagues. They never expected to be making headlines, the DSM is a bit dry if you sit down and read it. They were shocked when the headlines became about stealing services from 2/3 of…

IMFAR 2012: Genetic Variants in ASD

Any omissions or errors in this summary are on TPGA; we have tried to include explanatory links for specific scientific terms. -SR Common and Genetic Variants in the Etiology of ASD: Where is the Field Heading? Bernie Devlin University of Pittsburgh Statistical geneticist, helps design projects & studies. Dr. Devlin’s goal: convince you that we know quite a bit about the genetics of autism, in a few years we’ll know more. Exciting times! Are those times going to continue? Devlin maintains, yes.     Using array-based tech & high throughput sequencing,     Samples and collaboration He considers that discovery of autism risk genes is going to increase exponentially in near future. How will we get there? Autism Genome Project (AGP) Trios: Mother, Father, ASD child Families could be multiplex (2+ ASD individuals per family) or simplex (1 ASD individual per family)     Simons Simplex Collection (SSC) Families are mostly quartets (Mother,…

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IMFAR 2012: On Communicating Autism Science

Speaker Dana Marnane and TPGA editor & self-advocate Carol Greenburg This session was geared towards scientists, regarding why it makes sense to learn how to communicate autism science; how to write a a great article, and how to get your quotes in to articles. Alison Singer of the Autism Science Foundation put together and chaired this panel. Any errors or omissions are on us. -SR The speakers: Jane Rubinstein: Media Training 101 Karen Weintraub: Working with the Press Dana Marnane: Communicating Directly with Families and Other Stakeholders JANE RUBINSTEIN, Rubenstein and Associates Data show that only 58% of academic scientists are involved in media outreach — 78% of women, ~40% of men. 5% of participants created more than 50% of media quotes. Scientists queried cited lack of time as main barrier, but large number felt lack of skills in media relation as primary barrier to media participation. What is PR?…