As Peter Bell (Autism Speaks’ executive vice president for programs and services) reported at the Autism Speaks Blog, While IMFAR is first and foremost a scientific meeting, the meeting has developed into a healthy blend of science and stakeholder perspectives. John Elder Robison reported This year many scientists who have family members on the spectrum proudly wore stakeholder ribbons on their name tags One such scientist/presenter/stakeholder was Matthew J. Carey PhD, known to many as “Sullivan”, who blogs at LeftBrain/RightBrain. While Matt’s day-to-day research has to do with computer hardware, his avocation is writing about autism science. One area in which he excels is analyzing published papers and public datasets bearing on autism. For the 2011 IMFAR meeting, Matt submitted an abstract on the data presented by the National Household Education Surveys Program (NHES) The NHES surveys cover learning at all ages, from early childhood to school age through adulthood.…
Tag: IMFAR
Shannon Des Roches Rosa www.thinkingautismguide.com As an autism parent, I have a deep interest in seeing autism research proceed toward understanding and results with as few roadblocks or distractions as possible. So, for me, one of the most notable elements of IMFAR 2011 was seeing the Autism Science Foundation and Autism Speaks working alongside each other toward common goals, in the Autism Science Foundation’s tradition of “Funding Outstanding Science.” Anyone who has read my personal blog for more than a month or two knows I have been openly critical of Autism Speaks’ actions. I believe they have made some questionable decisions in how they approach and portray autism — but then so have I. If I’m going to give myself permission to evolve, I can’t very well fault them for past choices when their present direction includes wide-ranging funding of promising science, and listening to the community by broadening their…
S. Begeer VU University, Amsterdam Autism is a “man’s disorder” But what about the “Horse Girl” and the “Rain Women”? Some studies reports that females with autism Show more cognitive impairments Have worse social and communicative functioning Have a higher rate of intellectual disability: Increased self-destructive behavior, more dementia But other studies have shown that core autism symptoms do not vary by sex: No increase in psychiatric comorbidity Core symptoms of autism are relatively equal What are factors in the identification of females with autism? Parental expectations may be involved (higher social expectations) Clinicians expectations may be involved as well There is a risk of delayed or missed diagnoses in females Early identification is crucial From the abstract: imfar.confex.com/imfar/2011/webprogram/Paper8847.html Survey data were collected in the Netherlands from 2275 individuals with ASD. Timing and procedure of diagnosis were compared for males and females with autism, Asperger’s syndrome and PDDNOS. Results: Among…
San Diego’s Fox 5 covered the IMFAR press conference, including an interview with Shannon Des Roches Rosa:
Any omissions or errors are my own contributions. -SR S. Ozonoff, UC Davis MIND Institute Abstract: http://imfar.confex.com/imfar/2011/webprogram/Paper7878.html The study was a collaborative effort between UC Davis’s MIND Institute and the University of Colorado. We usually think of autism onset in terms of two categories: Autism symptoms that appear early in life, before 1st birthday, or A child who loses previously acquired skills after the first birthday Ozonoff’s study used home videos that were coded using objective methods to see when symptoms were first apparent, and how they unfolded over time. The study looked at two questions: Are two categories sufficient to describe onset? How do home video and parent reports correspond? For the home video method, parents gave the researchers all home video in which child appeared, from age 6 months through the second birthday. The researchers focused on four social/communication behaviors: Eye contact Social smiles Joint attention Language In…
Tom Insel Director, NIMH IACC update, since 2010 NIMH Director Tom Insel IACC is congressionally mandated, via the Combating Autism Act of 2006. Legislation will sunset in September 2011, unless the legislation is reauthorized. IACC has 23 members. It’s a diverse group — federal appointees, parents, autistic advocates, professionals. The IACC mission is to: Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder. Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations. Increase public understanding of the member agencies’ activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services Strategic plan: Concept is to accelerate research process. Want to bring everyone to the table and agree on priorities. Established goals in seven critical research areas Plan gets updated every year, has 78 objectives altogether 16…
This session was introduced by Geri Dawson, and included a number of presenters, whose work I am only summarizing briefly. Again, any omissions or errors are my doing. -SR Chair: Geri Dawson, Chief Science Officer for Autism Speaks Why a specific focus on nonverbal kids with autism? Because they’re often not included in research — such kids can be difficult to test, especially when so many evaluation paradigms include verbal testing. As a result, little is known about why some kids with autism don’t develop spoken language, or even what best approaches are. Biggest challenge: Evaluating cognitive abilities! Lots of kids who appear to have intellectual disability do not, at least not to degree perceived. In 2008, Autism Speaks launched a special initiative focused on nonverbal autism, and in April 2010, NIH sponsored a workshop to address what we do know, and gaps in knowledge. We need understand that nonverbal…
Today’s press conference was incredibly rewarding — and had an information density not generally found in nature. Any errors or omissions in the skin-of-my-teeth transcript below are mine entirely. -SR More info: IMFAR sessions and panels [PDF] The Autism Science Foundation live-tweeted the press conference: @AutismScienceFD LeftBrain/RightBrain: IMFAR 2011: The Press Conference (Part 1) Presenters: David Amaral, Ph.D., President, the International Society for Autism Research Eric Courchesne, Ph.D., UCSD Antonio Hardan, M.D., Stanford University School of Medicine David Mandell, Sc.D., Chairman of IMFAR Program Committee Irva Hertz-Picciotto, Ph.D., UC Davis —- David Amaral MIND Institute, INSAR president (INSAR is the host of IMFAR). IMFAR was first held in San Diego in 2001, with 250 attendees. Expecting 2,000 attendees this year. Autism is an incredibly complex, wide range disorder that affects 1% of children. List of co-morbid disorders is long and debilitating. Still little certainty as to what causes autism, which…
TPGA Editor Shannon Des Roches Rosa will be at IMFAR, the International Meeting for Autism Research, for the next four days. She’ll be blogging as much of the conference as she can, right here at The Thinking Person’s Guide to Autism, starting with today’s 11 AM PST press conference — so stay tuned! The number of IMFAR sessions and panels [PDF] is incredible. If you want to make a case for a specific session Shannon should report on, leave a comment and she’ll do her best. Thanks again to the Autism Science Foundation for the travel grant that made Shannon’s attendance possible. And if you’re actually at IMFAR, do find our roving editor and say hello, or DM her on Twitter: @shannonrosa.