Autism Speaks gets Spectrum board member

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John Elder Robison, author of look me in the eye, states on his blog he has accepted a post on AutismSpeaks funding board. According to his post, the board is comprised of 31 scientists, 2 parents, and himself. Since he too is a parent, the board is 3/34th parents, and 1/34th on the Spectrum. I therefore wonder, as someone points out in his blog comments, if they aren't simply attempting to shield themselves from critisism. Discuss.

http://www.autismspeaks.org/press/john_ ... _board.php

[edit] Having read the bios of the board members, John Robison mis-characterized the compostion of the board. There are 33 scientists (geneticists, pyschologists, statisticians, etc.), two who happen to be parents of ASD individuals. And John Robison. [/edit]

It won't make any difference at all, 1 out of 34. It's just a PR stunt as you said.

See if you can pick out the Aspie from the first two sentences of each persons bio. For a bigger challange, pick out the two parents of ASD individuals, other than said Aspie.
http://www.autismspeaks.org/science/ove ... r_bios.php

[genders changed to masculin, so not to provide any hints.]

[...] is a Professor in the Department of Biology and Director of the Biological Basis of Behavior Program at the University of Pennsylvania. [...] was an undergraduate at Swarthmore College, receiving a B.A. in Chemistry in 1985.

[...] received his undergraduate education at Northwestern University and graduated with a degree in Psychology. He then moved to the University of Rochester where he received a joint Ph.D. in Neuroscience and Psychology.

[...] trained in statistical genetics and genetic epidemiology under Dr. Robert Elston at the LSU Medical Center in New Orleans. Subsequently, he received postdoctoral and medical genetics training at the National Cancer Institute and the National Institute for Arthritis, Musculoskeletal and Skin Diseases Institute.

[...] is a Professor of Psychology at the University of California, San Diego (UCSD). In 1968, he earned his Ph.D. in in Quantitative Psychology with a concentration in Behavioral Statistics from the University of Illinois.

[...] is Associate Dean for Interdisciplinary Programs and Professor of Clinical Biostatistics at the Columbia University Mailman School of Public Health. He earned her doctorate in biostatistics from Harvard in 1989, and joined the Columbia faculty immediately thereafter.

[...] is Professor of Neurology at Harvard Medical School and Professor in the Department of Environmental Health at Harvard School of Public Health (HSPH). He is also a Senior Research Associate in Neurology and a Senior Associate in Psychiatry at the Children's Hospital Boston.

[...] is Clinical Neuropsychologist and Joaquin M. Fuster Professor of Cognitive Neuroscience in the UCLA Department of Psychiatry and Biobehavioral Sciences. [...] specializes in functional brain imaging with PET and functional MRI.

[...] received a Ph.D. degree from Cornell University which was followed by Postdoctoral research in statistical genetics in the Department of Human Genetics at the Medical College of Virginia. For the last 25 years,[...] has been at UCLA and affiliated hospitals conducting research in statistical methods and the genetics of complex disorders.

A graduate of Cornell University, [...] joined Schering-Plough in 1988. For 17 years, his research concentration has been in the fields of lipoprotein metabolism and mechanisms of energy homeostasis.

[...], is a Senior Research Scientist at the Division of Research, Kaiser Permanente Northern California, and Director of the California Center for Autism and Developmental Disabilities Research and Epidemiology (CADDRE). [...] received a B.A. in environmental sciences (1982), and a M.P.H. (1986) and Ph.D. (1995) in epidemiology at the University of California at Berkeley.

[...], a board-certified psychiatrist by training, is a Professor of Radiology and Adjunct Professor of Bioengineering and Psychiatry at the University of Washington, a Research Affiliate at the Center on Human Development and Disability, Director of the Neuroimaging Research Group and Interim Director of the UW Autism Center Clinical Program. He is a member of the American College of Neuropsychopharmacology.


[...] is the William James and Vilas Research Professor of Psychology and Psychiatry and Director of the W.M. Keck Laboratory for Functional Brain Imaging and Behavior and the Laboratory for Affective Neuroscience at the University of Wisconsin-Madison. He received his Ph.D. from Harvard University in Psychology and has been at Wisconsin since 1984.

[...] is an Associate Professor of Psychiatry and Human Genetics at the University of Pittsburgh School of Medicine and an Adjunct Associate Professor of Statistics at Carnegie Mellon University. He received his Ph.D. from Pennsylvania State University and B.S. from Indiana University of Pennsylvania.

[...] is currently Board of Trustees Distinguished Professor in the Department of Psychology at the University of Connecticut and Professor of Pediatrics in the University of Connecticut School of Medicine. [...] received her Ph.D. in Clinical Psychology from Rutgers University and her post-doctoral training in neuropsychology at Boston University and the Boston VA Medical Center, under the mentorship of Drs. Edith Kaplan and Allan Mirsky.

[...] studied mathematics and humanities at Yale in the Directed Studies honors program, and he received his B.A. (1973) and M.D. (1976) from the accelerated medical program at Johns Hopkins University, as well as an M.P.H. from Johns Hopkins (1981). He performed a postdoctoral fellowship in the developmental biology of Dictyostelium with Samuel Barondes at UCSD.

[...] has been interested in the neurobiology of mental illness and learning and memory across the lifespan since his high school days at Bishop's Stortford College in the United Kingdom. After receiving his BA from Franklin and Marshall College, PA and MA and Ph.D. from Kent State University, he spent 5 years at Princeton University as a post-doctoral fellow studying the neurobiology of learning and memory during early development and old age.

[...] is an Associate Professor of Neurology and Neurobiology, Physiology and Behavior at the Center for Neuroscience at UC Davis. [...] received a B.S. in Biology from Davidson College in 1988 and a Ph.D. in Neurobiology from Duke University in 1996.

[...] is an Associate Professor in the Department of Psychiatry at the University of North Carolina at Chapel Hill (UNC) and Director of the Mouse Behavioral Phenotyping Laboratory, a core facility of the Carolina Institute for Developmental Disabilities (CIDD). [...] received a PhD degree from the Department of Psychology at UNC in 1992 and completed a postdoctoral fellowship in the UNC Brain and Development Research Center.

[...] is Research Assistant Professor in the Department of Psychiatry and Adjunct Research Assistant Professor in the Department of Psychology at the University of Washington. He received a Ph.D. in Psychology from the University of California, Irvine Department of Cognitive Sciences in 2004.

[...] is Professor of Pediatrics and Neuroscience at Harvard Medical School and the Richard David Scott Professor of Pediatric Developmental Medicine Research at Children's Hospital Boston. He is also an affiliate faculty member in the Harvard Graduate School of Education and a Professor in the Department of Society, Human Development and Health, Harvard School of Public Health.

[...] is currently a Professor of Neuroscience and Cell Biology, the New Jersey Professor of Spinal Cord Research, and Director of the Postdoctoral Career Development Program at the UMDNJ-Robert Wood Johnson Medical School. He received his Ph.D. from Harvard University and did postdoctoral work at Duke University and the Max Planck Institute for Biophysical Chemistry in Goettingen, Germany.

Since 2001, [...] has been a Research Scientist in the Program in Genetics and Genome Biology at The Hospital for Sick Children in Toronto. He is an Associate Director of The Center for Applied Genomics, a Canadian Genome Center also at The Hospital for Sick Children.

Since [...] joined the Caltech faculty in 1983, the [...] laboratory has contributed to the discovery of a new family of proteins, now termed the neuropoietic cytokines, because of their action in both the nervous and immune systems. Additionally, his laboratory has demonstrated that one of these cytokines, leukemia inhibitory factor, is a key regulator of the brain's response to injury, seizure and ischemia, through its control of glial activation, immune cell infiltration, neuronal death and neurogenesis, as well as neuronal gene expression.

[...] is a leader in developing and implementing behavioral test batteries for the analysis of mutant mice. [...] has studied the behavioral responses of well over 150 different lines of genetic mice and was a co-author on the very first paper published in Science describing a behavioral phenotype in a knockout mouse.

[...] obtained his B.S. in Biological Sciences from Cornell University and his Ph.D. in Toxicology from the University of Maryland in 1984. He worked with Professor John Casida as a Postdoctoral fellow in the Pesticide Chemistry and Toxicology Laboratory at UC Berkeley from 1984 to 1987, during which time he discovered a family of calcium channels termed ryanodine receptors.

[...] is an Assistant Professor of Pediatrics at the University of Colorado at Denver and the Director of the Child Development Unit at The Children's Hospital in Denver, Colorado. [...] is Board Certified in Pediatrics, Developmental and Behavioral Pediatrics and Neurodevelopmental Disabilities.

[...] is a Behavioral Scientist with the Developmental Disabilities Branch at the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention (CDC). His current work at CDC involves tracking the rates of ASDs in Atlanta and working with state partners to develop the Autism Developmental Disabilities Monitoring Network (ADDM), which is an ongoing monitoring system for ASDs around the United States.

[...] is free range Aspergian male, having grown up in the 1960s before the Asperger diagnosis had come into common use. After dropping out of high school, [...] worked in the music business and the electronics industry before founding [...] Service, a specialty automobile company in Springfield, Massachusetts.

[...] is trained as a clinical psychologist with expertise in neuropsychology and neuroimaging. He currently is the Director of the Center for Autism Research (CAR) at Children's Hospital of Philadelphia (CHOP), and is the R.A.C. Endowed Professor of Pediatrics at the University of Pennsylvania School of Medicine.

[...] is a Clinical Assistant Professor at the University of Washington Medical Center. After graduating from Princeton University, [...] attended the University of Virginia School of Medicine and then came to Seattle for his Internal Medicine Residency at the University of Washington (UW) Medical Center.

[...] received his B.A. from the College of Wooster in Ohio and his Ph.D. in Biochemistry from the University of Georgia. He joined The Johns Hopkins University School of Medicine as a Postdoctoral Fellow in 1985, where he rose to the rank of Professor of Pathology and Neuroscience.

[...] is Professor of Pediatrics and Psychology and is a Vanderbilt Kennedy Center Investigator. [...] is Director of the Vanderbilt Treatment and Research Institute for Autism Spectrum Disorders (TRIAD), which he founded in 1998.

[...] is Professor of Anatomy & Neurobiology at Boston University School of Medicine, Professor of Psychology and Director of the Laboratory of Developmental Cognitive Neuroscience at Boston University. [...] received his Bachelors in Science in Psychology from University College London, and her doctorate in Experimental Psychology from Harvard University in 1978.

[...] is the Joseph and Rose Kennedy Distinguished Professor of Neurology at Harvard University and Director of the Genetics and Aging Research Unit, consisting of eight laboratories in the MassGeneral Institute for Neurodegenerative Diseases at Massachusetts General Hospital (MGH). [...] has been investigating the molecular genetics of human neurodegenerative and psychiatric disease since 1980 when he participated in the pioneering study at MGH that led to location of the Huntington's disease gene, the first disease gene to be found by genetic linkage analysis.

[...] is Associate Dean for Research at Boston University School of Public Health, where he is also Professor and Chair of the Department of Environmental Health. Trained in clinical psychology and lifespan developmental psychology with specialization in clinical neuropsychology, he has worked as a scientist practitioner for the past 30 years.

[...] is Associate Professor in the Department of Pediatrics at the University of Alberta, the Co-director of the Autism Research Centre based at the Glenrose Rehabilitation Hospital, and is the current chair of the Autism Speaks Baby Siblings Research Consortium. He holds an Alberta Heritage Foundation for Health Research (AHFMR) Health Scholar and Canadian Institutes for Health Research (CIHR) New Investigator Award.

The rest of the board members will probably bully and ridicule him, eventually.

I've addressed the issue of why one person's vote matters in this blog post:

http://jerobison.blogspot.com/2010/03/o ... rsons.html

If you have thoughts on that, I'd appreciate your leaving them on my blog so the wider community can share them too. I have copied the blog post below:

It's been a week since I announced that I was joining the review boards at Autism Speaks. Many of you supported me, but quite a few doubted my ability to exert much influence as the lone Aspergian on the board.



In particular, people have suggested that one person’s vote can’t make any difference to thirty scientists who share a review board with one misfit (me.) The implication is, the thirty scientists vote as they wish, and my lone vote is ignored. That perception is totally wrong, and I’d like to take a moment to show you why . . .


To understand the significance of one person’s vote, please join me as we review and rate some promising (sample) medical research. I’m describing the general process of review on the Autism Speaks boards, but the process is essentially the same for the NIH and other government agencies, and many big private foundations.


The process starts as research proposals pour into the agency. The first step is to ensure applicants met all the ground rules to qualify for the funds at hand. Agency staff does that work. This first screening may weed out half the proposals. The rejected proposals go back to the researchers with various notes and suggestions. Many researchers clean up their applications and come back again so this is really an iterative process.


Next, the proposals that made it through the initial screening reach the review board – the place I serve. Proposals are dealt out to members of the board for a first ranking. Much of the time, three reviewers read each proposal. They may be assigned randomly, or they may be dealt out by expertise. However they are allocated, if there are 30 of us on the board, and there are 100 proposals to deal with, we will each be assigned ten.


We rate the proposals we are given in several areas, like the impact on the community, how likely the work is to succeed, and whether it’s truly new research or a rehash of something already covered. Each area is scored from 1-5, or perhaps 1-7. So a proposal that I (or any of us) rated 4,4,5,5,3 in each of five areas would have a composite score of 4.2


The three initial reviewer scores are combined for a total score, and the proposals are ranked based on this first pass. At that point, staffers take the funds available for allotment and they see how far down into the ranks the money goes. For example, if we have twenty million dollars to distribute, that might be enough to fund the top third of the applications.


Given that, the agency takes all the proposals in the top third, plus a cut of the next tier, for final review. That’s where we all discuss them, and we all vote. And that’s where any one voice can really matter a lot. I’ll give you an example. Let’s say a piece of research involves social skills training, and most of the scientists gave it a 3 for importance. But I feel that it’s a really important proposal, based on my life experience, so I speak up. By doing so, I cause people around the room to rethink the proposal’s importance, and a number of people move their score from 3 to 4 or even 5. The result: that proposal’s average score rises, which moves it from “not good enough to fund” into the “recommended for funding” category.


The same thing can happen in reverse. If I said a particular proposal was irrelevant, its score might drop, and it would sink in the ranking allowing other more important work to be funded.


Any of us have the power to move ranking in this way. You might say our influence is directly proportional to how much we believe and our oratory skill.


The idea that I would be ignored or bullied – as some have suggested – is simply not realistic. Any of you who’ve met me in person know I’m six foot three and loud, so I’m hard to ignore. And these are gentle people. As Marlon Brando suggested in The Godfather, they are receptive to reasonable arguments.


The system I described varies a little bit from one agency to another but I think you can get the general idea. In the first round, the proposals are graded by teams of three, and the size of the entire board really does not matter. In the second round, a persuasive speaker can move a room of fifty people as effectively as he can move five people. So once again, the size of the board is not really indicative of any one person’s importance.


I guess being a reviewer is really what you make of it. If you’re meek as a lamb your vote won’t change anything. But if you are passionate, and articulate, you can really accomplish a lot.


And that’s what I intend to do, every time I vote.

Well, you have my support. I hope you drop in more often. There are many things we would like Autism Speaks to understand and you could really help with that.

Feel free to write or message me any time. You can write directly to [email protected] and I do check in here as time permits.

Welcome to WP, JohnRobison. Here's hoping that you are more than just a token autistic on the Autism Speaks board.

Orwell, I hear all your concerns but I hope they prove unfounded. I do not think I will be a token autistic nor do I think I'll be ignored.

Meanwhile, I have to keep going on my next book, whose release draws closer every day . .

Thank you for taking the time to address these concerns. I hope that they have made a mistake in their selection of you (or genuinely want your input).

Also, you have posted here and mentioned on your blog a few areas you are interested in... Naturally, TMS research that you've been activily involved in, as well as community funding. Could you comment on what other research areas you may push for greater funding, as well as areas that AutismSpeaks may currently fund that you feel are of lesser importance?

According to their site, you are on two boards - the Science Advisory Board and the Treatment Advisory board. There are also a Tissue Advisory Board, Innovative Treatment Advisory Board, AGRE Steering Committee, ATN Steering Committee, ATP Steering Committee, ATP Exectutive Committee, and ACTN Steering Committee. The AutismSpeaks website does not provide much explaination of the functions and differences of each of these boards. Could you comment?

roguetech wrote:

John being on the board has to be a good thing because either they'll have to let him participate or he'll eventually get fed up and resign. The resignation of the only spectrum person from the boards would be a PR nightmare for AUTISM SPEAKS, especially after all the heat they've taken for not having anyone. Unfortunately the areas where John will have influence are the areas the AUTISM SPEAKS is pretty good at, like fund scientific research, rather than actually helping people now, keeping salaries and expense at a reasonable level or advertising that doesn't inflame, depersonalize and humiliate they people they are purporting to help.