IMFAR 2011: Onset Patterns in Autism: Correspondence Between Home Video and Parent Report

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…

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IMFAR 2011: NIMH Director Tom Insel on the IACC

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…

IMFAR 2011: Characterizing Cognition in Nonverbal Individuals With Autism: Innovative Assessment & Treatment

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…

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IMFAR 2011 Press Conference

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…

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TPGA Will Be Blogging IMFAR 2011

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.

Random Acts of Pickles

Patty Porch www.pancakesgoneawry.blogspot.com Last night, as I lay awake staring at the ceiling, I realized that it has been exactly a year since Danny was diagnosed with high functioning autism. I am surprised at how quickly the time has passed, since hearing the diagnosis made me feel like the world was ending. I remember how it felt like being punched in the stomach when the doctor said that no, Danny did not have PDD-NOS, but rather autism. Autism. The word I had been dreading. My sister came with me for that diagnosis and she held my hand and vainly tried to hold back her tears. She wasn’t surprised by the verdict — I don’t think anyone really was — but that didn’t make it any easier for either of us to swallow. I felt strangely defensive and protective of Danny. All I wanted to do was put my arms around…

Say Yes! to Summer Camp

Chris Pierce is the Director of Via West, part of Via Services. It’s an organization over half a century old that provides early intervention services in a clinic setting, and offers a camp experience to participants ages five and up, including people in their 70s and 80s, at their Via West campus in the Santa Cruz mountains, just a few minutes drive from the heart of Silicon Valley. The client needs range from autism, to mild physical or cognitive impairments to those with more significant mobility issues and medical concerns. Chris how did you come to be a camp director and why do you think camp is so important? It was an integral part of my personal child hood. My father was a founder of an adult special needs program back at the camp he started outside of Chicago, Illinois. It’s been in my DNA from day one. I was…

Motivation, Middle School, and iPad Cool

Elaine Park   Our house is frequently really loud, as my seventh grade son, Drew*, races his long fingers at break-neck speed and top volume, up and down the piano, pounding out the Imperial March from Star Wars or some original composition of his own. His fingers are fast and strong, dexterous and coordinated. They are equally skilled at piecing together intricate creations out of his world-class Lego collection. But because of a neurological quirk, this same child can’t tie his own shoes and has difficulty writing with a pencil or pen. He has a lot to say and wants to share it, but the frustration of handwriting often reduces him to despair, and is a frequent problem when it comes to completing language arts assignments. Like many parents of a child on the autism spectrum, I hope this can be resolved by his learning to type. Once Drew has…

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Autism, Siblings, and the Art of Unconditional Love: An Interview With Lindsey Nebeker

Lindsey Nebeker is one of our community’s most visible activists, speaking out on topics ranging from autism and dating in Glamour magazine, to the need for more safety and support measures for individuals with autism at a recent Interagency Autism Coordinating Committee meeting. Lindsey was diagnosed with autism at the age of two, and began to speak around age four. She grew up in Tokyo, Japan with her younger brother James, who shares the same diagnosis but faces more challenges. She recently spoke with TPGA about her experience growing up as one of two siblings with autism. Tell us a little bit about yourself. How old are you, where do you invest your greatest energies, and when did you first receive your autism diagnosis? I am a pianist/songwriter, photographer, public speaker, and advocate currently residing in the Washington, DC metro area. As a woman in my late twenties, I have…