The Thinking Person’s Guide to Autism has added five new editors.
They are:
Kerima Cevik
Rachel Cohen-Rottenberg
Rob Gross
Kassiane Sibley
Sandy Yim
There are brief bios for each on the TPGA website: TPGA Welcomes Five New Affiliate Editors
This looks to be an excellent addition to their team.
The U.S. Department of Health and Human Services has announced the public membership for the Interagency Autism Coordinating Committee (IACC). The press release is below.
HHS announces new members of the Interagency Autism Coordinating Committee
Health and Human Services (HHS) Secretary Kathleen Sebelius announced today that she has invited 15 individuals to serve as public members on the Interagency Autism Coordinating Committee (IACC).
The IACC is a federal advisory committee established by the Combating Autism Act of 2006 and reauthorized by the Combating Autism Reauthorization Act of 2011. The committee is composed of both federal officials and public members, and is charged with (1) coordinating all efforts within HHS concerning autism spectrum disorder (ASD), (2) developing and annually updating a strategic plan for ASD, and (3) providing advice to the Secretary on matters related to ASD.
Membership of the committee includes a wide array of federal agencies involved in ASD research and services, as well as public stakeholders who represent a variety of perspectives from within the autism community. This makeup of the IACC membership is designed to ensure that the committee is equipped to address the wide range of issues and challenges faced by families and individuals affected by autism.
“The individuals invited to serve on the Interagency Autism Coordinating Committee represent people on the autism spectrum, autism advocates, parents, clinicians, and researchers from across the country,” Secretary Sebelius said. “I look forward to working with the committee members to make a real difference in the lives of people with autism and their families.”
The individuals invited to serve on the Interagency Autism Coordinating Committee, subject to prescribed appointment procedures, include:
Idil Abdull
Ms. Idil Abdull is the parent of a son with autism and Co-Founder of the Somali American Autism Foundation. As a Somali-American mother, she has worked to raise awareness about the high prevalence of autism among Somali immigrants living in Minnesota and has helped to change autism policies in the state. She also has a special interest in serving as a voice for underrepresented groups more broadly, including those that are struggling with language, cultural, and economic barriers as they seek ways to help their family members with disabilities. Ms. Abdull holds a bachelor’s degree in Health Care Administration.
James Ball
Dr. Jim Ball is a Board Certified Behavior Analyst (BCBA-D) who is the President and CEO of JB Autism Consulting. He has worked in the private sector field of autism for more than 25 years, providing educational, employment, and residential services to children and adults affected with autism. He is a Board member of the Autism Society’s (AS) Board of Directors and is currently the Chair of the National Board. He received his doctorate of education from Nova Southeastern University in Fort Lauderdale, Florida.
Anshu Batra
Dr. Anshu Batra is a developmental pediatrician specializing in autism and early childhood developmental disorders and is the mother of two sons with autism spectrum disorder. She currently works in a private practice that provides medical services to more than 600 patients with developmental disabilities, the majority of whom have an autism diagnosis. The practice is unique not only in terms of the racial, ethnic, and socio-economic diversity of its patients, but also in its scope. Dr. Batra has become an outspoken advocate to educate both the professional and lay communities about autism and considers how to best integrate a growing subpopulation of individuals on the spectrum into society. She received her M.D. from the University of Michigan and trained in Pediatrics at the University of North Carolina at Chapel Hill.
Noah Britton
Mr. Britton was diagnosed with Asperger’s syndrome a decade ago as a freshman in college and has spent every year since working directly with people on the spectrum. He is an Adjunct Professor of Psychology at Bunker Hill Community College and has presented on autism as a guest lecturer at the University of Virginia and Tufts University. Prior to that Mr. Britton worked directly with teenagers on the spectrum as head counselor for the Northeast ARC’s Spotlight program and as a drama teacher at the New England Academy in Massachusetts. Mr. Britton currently serves on the scientific/educational advisory board of the Autism Higher Education Foundation. He received his master’s degree in psychology from Hunter College in 2010.
Sally Burton-Hoyle
Dr. Sally Burton-Hoyle, sister to a person on the autism spectrum, has focused her life and career on improving the education of people with autism and other challenging behaviors. She serves as area coordinator of the Masters of Autism Spectrum Disorders program at Eastern Michigan University (EMU). This program is based on Positive Behavioral Supports and family/community involvement. Dr. Burton-Hoyle has been at EMU since 2006 and was Executive Director of the Autism Society of Michigan prior to EMU. In addition, she has classroom experience as a special education teacher. Dr. Burton-Hoyle holds a doctorate in education from the University of Idaho and a master’s degree in special education from the University of Kansas.
Matthew Carey
Dr. Matthew Carey is the father of a young child with multiple disabilities, including autism spectrum disorder, and is a frequent contributor to the Left Brain/Right Brain blog and the Autism Science Foundation Blog. His writing focuses on reviewing current autism research in an understandable way for the public and he is deeply committed to communicating the importance of getting the science right for autism. He is also interested in analyzing trends in health and education public datasets. Dr. Carey is an active industrial researcher in computer hardware whose current research interests include magnetic thin films, spintronics, and magnetic nanostructures. He received his Ph.D. in Physics from the University of California, San Diego, and his M.S. in Physics from the University of Illinois, Urbana-Champaign.
Dennis Choi
Dr. Dennis Choi is the Executive Vice President of the Simons Foundation, the second largest funder of autism research, and he was previously a member of the Foundation’s Scientific Advisory Board. His past positions have included Vice President of Academic Health Affairs at Emory University, Executive Vice President of Neuroscience at Merck Research Labs, and professor and head of Neurology at Washington University Medical School. His research experience has included work on the physiological mechanism of action of benzodiazepine drugs and the processes responsible for nerve cell death after ischemic or traumatic insults. His research on mechanisms of brain and spinal cord injury has been recognized with several awards. Dr. Choi received his M.D. from the Harvard-MIT Health Sciences and Technology Program, as well as a Ph.D. in pharmacology and neurology residency/fellowship training from Harvard University, before joining the faculty at Stanford University School of Medicine from 1983-1991.
Jose Cordero
Dr. Corderois the Dean of the Graduate School of Public Health at the University of Puerto Rico. Prior to this appointment, Dr. Cordero was an Assistant Surgeon General of the Public Health Service and the Founding Director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia. He served in this capacity since the establishment of the center on April 16, 2001. Dr. Cordero worked for 27 years at the CDC and has extensive public health experience in the fields of birth defects, developmental disabilities, and child health. He obtained his medical degree from the University of Puerto Rico in 1973, completing residency training in pediatrics at Boston City Hospital and a fellowship in medical genetics at the Massachusetts General Hospital. In 1979, Dr. Cordero obtained a Masters in Public Health from Harvard University.
Jan Crandy
Ms. Jan Crandy is a case manager for the Nevada State Autism Treatment Assistance Program (ATAP) and has been a leader in raising awareness and treating autism spectrum disorders in Nevada for more than 15 years. She is a dedicated advocate and parent of a child with autism. In her current position at ATAP, Ms. Crandy manages and develops programs for more than 65 children with ASD. In 2007, Ms. Crandy was appointed to the Nevada Autism Task Force by Governor Jim Gibbons. In that role, Ms. Crandy helped develop policy recommendations for state policymakers on ways to improve the delivery and coordination of autism services in Nevada. She also serves as Chair of the Nevada Commission on Autism Spectrum Disorders. Ms. Crandy began her career in advocacy in 1996 when her daughter was diagnosed with autism. With the support of family and friends, Ms. Crandy started a nonprofit organization called Families for Early Autism Treatment (FEAT) to help parents of children with ASD in Southern Nevada.
Geraldine Dawson
Dr. Dawson is the Chief Science Officer for Autism Speaks, where she works with the scientific community and other stakeholders to shape and expand the organization’s scientific vision. In addition to her work with Autism Speaks, Dr. Dawson holds the positions of Research Professor of Psychiatry at the University of North Carolina at Chapel Hill, Adjunct Professor of Psychiatry at Columbia University, and Professor Emeritus of Psychology at University of Washington. Dr. Dawson is a licensed clinical psychologist who has published extensively on autism spectrum disorders, focusing on early detection and intervention and early patterns of brain dysfunction. In collaboration with Dr. Sally Rogers, Dawson helped to develop and empirically-validated the Early Start Denver Model, the first comprehensive early intervention program for toddlers with autism. She has collaborated on numerous studies of brain development and function and genetic risk factors in autism. From 1996-2008, Dr. Dawson was Founding Director of the University of Washington Autism Center where she directed three NIH Autism Center of Excellence Award programs of research focusing on genetics, neuroimaging, early diagnosis, and clinical trials. Dr. Dawson has served as a public member on the Interagency Autism Coordinating Committee since 2010 and has been invited to continue her service. Dr. Dawson received her Ph.D. in Developmental Psychology with a minor in Child Clinical Psychology from the University of Washington.
David Mandell
Dr. David Mandell is a health services researcher and psychiatric epidemiologist who seeks to identify the best ways to organize, finance and deliver services to children with psychiatric and developmental disabilities. He is an Associate Professor of Psychiatry and Pediatrics at the University of Pennsylvania’s School of Medicine. The goal of his current research is to improve care for children with autism and their families by developing successful interventions at the individual, provider and system levels to decrease the age at which children with autism are recognized and enter treatment, and to improve the services and supports available to them and their families. Dr. Mandell holds a bachelor of arts in psychology from Columbia University and a doctorate of science from the Johns Hopkins School of Hygiene and Public Health.
Lyn Redwood
Ms. Lyn Redwood is Co-Founder and Executive Director of the Coalition for SafeMinds and Co-Founder of the National Autism Association (NAA). She became interested in autism research and advocacy when her son was diagnosed with Pervasive Developmental Disorder. Ms. Redwood served on the Department of Defense Autism Spectrum Disorder Research Program from 2007-2009 and was acknowledged for a decade of service by Spectrum Magazine as their Person of the Year in 2009. Ms. Redwood has served as a public member on the Interagency Autism Coordinating Committee since 2007 and has been invited to continue her service. Ms. Redwood holds a Master’s of Science in Nursing from University of Alabama and is a registered nurse in the state of Georgia.
Scott Michael Robertson
Mr. Scott Michael Robertson co-founded the Autistic Self Advocacy Network (ASAN) in 2006 and currently serves as ASAN’s Vice Chair of Development. Mr. Robertson, an adult on the autism spectrum, is currently a Ph.D. Candidate in information sciences and technology at Penn State University’s University Park campus. His research pursuits in the fields of disability studies, human-computer interaction, and computer supported work/learning focus on understanding and improving the lives of people with neurological and developmental disabilities. Beyond his research, Mr. Robertson has actively served the cross-disability and autism communities as a mentor, teacher, advocate, public speaker, and writer. Mr. Robertson holds a bachelor’s degree in computer science from Rensselaer Polytechnic Institute and a master’s degree in human-computer interaction from Carnegie Mellon University.
John Elder Robison
John Elder Robison is an adult on the autism spectrum who grew up in the 1960s before the Asperger diagnosis came into common use. At age sixteen, Mr. Robison left high school to join his first band as a sound engineer. Within a few years he was building equipment for Pink Floyd’s sound company, touring the hockey rinks of Canada with April Wine, and creating the signature special effects guitars for the rock band, KISS. John went on to design sound effects and other circuits for some of the most popular electronic games and toys of the era before moving into more conventional engineering management. In the late 1980s, John left electronics for a new career – cars. His company, J E Robison Service, grew to be one of the largest independent restoration and service specialists for BMW, Bentley, Jaguar, Land Rover, Mercedes, and Rolls Royce cars. Mr. Robison is an adjunct faculty member in the Department of Communication Sciences and Disorders at Elms College in Chicopee, Massachusetts; speaks publicly about his experience as a person on the autism spectrum; and is the author of popular books about living life with autism, Look Me in the Eye, My Life with Asperger’s, and Be Different, Adventures of a Free-Range Aspergian.
Alison Singer
Ms. Alison Singer is Co-Founder and President of the Autism Science Foundation, a not-for-profit organization launched in April 2009 to support autism research. The Autism Science Foundation supports autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. Ms. Singer is the mother of a daughter with autism and legal guardian of her adult brother with autism. From 2005-2009 she served as Executive Vice President and a Member of the Board of Directors at Autism Speaks. Ms. Singer has served as a public member on the Interagency Autism Coordinating Committee since 2007 and has been invited to continue her service. Ms. Singer graduated magna cum laude from Yale University with a B.A. in Economics and has an M.B.A. from Harvard Business School.
Public announcement of the formal appointments of federal and public members to the IACC will follow in the coming weeks.
More information about the Interagency Autism Coordinating committee is available at: http://iacc.hhs.gov
Tom Insel, director of the U.S. National Institute of Mental Health and Chair of the Interagency Autism Coordinating Committee has published a blog article coinciding with the CDC announcement of 1 in 88 estimated prevalence.
As a government publication, I feel it is OK to copy it here in total, but you are encouraged to read it on the NIMH website: Autism Prevalence: More Affected or More Detected?
Autism is always surprising. Earlier today, the CDC released new numbers from their ongoing surveillance of autism prevalence, the Autism and Developmental Disability Monitoring (ADDM) Network. What was once considered a rare disorder is now reported as affecting 1 in 88 children, 1 in 54 boys. These new numbers, up 78 percent from 2002 and 23 percent from 2006, raise immediate questions. Are more children affected or more detected? Does the increase reflect a growing problem, or do these new numbers reflect an improvement in our ability to diagnose and serve those affected?
These new data do not answer these questions. The CDC surveillance project focuses on 8-year-olds identified in 2008; that is, children who were born in 2000. By definition, autism begins before age 3, so a focus on 8-year-olds should capture anyone who was identified and still has a diagnosis. The prevalence numbers are based on a standardized assessment of descriptions of behaviors culled from administrative or health records from select communities, not on standardized diagnostic interviews in the general population. The strength of this approach is its wide reach, allowing a comparison across 14 states. The CDC reports a four-fold variation across sites. These new results, as with those from other records-based surveillance systems, do not answer questions related to why the identified prevalence of autism has changed over time.
Other research suggests a complicated picture. A total population study of all 7–12-year-olds in a town in South Korea (more than 55,000 children) used standardized diagnostic instruments for children who screened positive and reported a prevalence of 2.64 percent.1 That is 1 in 38 children! There is no reason to expect that this prevalence is unique to this community. To be sure, two-thirds of these children had never received a diagnosis of autism spectrum disorder (ASD), meaning that the identified prevalence was closer to 1 percent or one in 100, roughly the same prevalence reported in the United States. From this perspective, the increase reported by the CDC might mean we are better at detecting children who meet criteria for ASD, but potentially we still are only halfway to the actual prevalence in the general population. Indeed, the biggest increase in the CDC surveillance report was in Hispanic and African American children, groups which previously had low rates of detection.
But can we be certain that more children are not affected? Data from the Developmental Disability Services registry in California demonstrates a 12-fold increase in the number of children receiving services for autism over the past 20 years, with a continuing rise recently. But these data, while dramatic, cannot rule out increased use of the diagnosis. Bearman and colleagues who have studied the California trends suggest that only about 26 percent of this increase can be explained by diagnostic substitution, especially for the most severe cases — children with intellectual deficits — which may not have been identified as autism in an earlier era. Another fraction can be attributed to better ascertainment or detection especially for children at the less severe end of the spectrum. Together these factors explain only a part of the linear increase observed in the California registry. In the absence of other explanations they and others suggest that a real increase is quite likely.2, 3, 4
Which makes a recent report from England especially surprising. In a careful epidemiological study based on a national sample (n = 7,461 adults) from 2007, Brugha and colleagues did careful diagnostic assessments based on standardized interviews. They found that familiar rate of about 1 percent in adults across the entire age range without a significant reduction in the older part of the sample as one would expect if the prevalence had increased in recent years.5
This takes us back to the central question: has the number of children with ASD increased or not? Total population epidemiological studies suggest much or all of the increase is due to better and wider detection. Studies of administrative and services data suggest that better detection cannot fully explain the profound and continuing increase. Are we seeing more affected or more detected? The question is vitally important, but there is not one, simple answer just as autism is not a single, simple disorder.
If there is an increase in the number affected, then we need to find the causal factors to bend the curve. Analogous increases in food allergies, asthma, and Type 1 diabetes have provoked an aggressive search for environmental causes. If the number of children with ASD has not changed, but we are diagnosing and serving 12-fold more of them over the past two decades, then we need to focus on better diagnosis and treatments rather than looking for new environmental factors driving the precipitous increase.
Science can resolve this dilemma, but the methods to examine this question as well as the answers will be complex. While it is never possible to go back in time, longitudinal population based studies and even careful retrospective studies can determine if more children are affected and if the nature of the disorder is changing over time. The changes in prevalence of other developmental disorders, measured with biomarkers (Type 1 diabetes) or emergency room visits (food allergies), appear to be true increases in the number of children affected. As diagnostic changes and ascertainment fail to explain the majority of the increase in autism prevalence, it seems prudent to assume that there are indeed more children affected and continue an aggressive search for causes while striving to improve detection, treatments, and services. Our working assumption is that there are both more children affected and more detected.
References
1Kim YS, Leventhal BL, Koh YJ, Fombonne E, Laska E, Lim EC, Cheon KA, Kim SJ, Kim YK, Lee H, Song DH, Grinker RR. Prevalence of autism spectrum disorders in a total population sample. Am J Psychiatry. 2011 Sep;168(9):904-12. Epub 2011 May 9. PubMed PMID: 21558103.
2King M, Bearman P. Diagnostic change and the increased prevalence of autism. Int J Epidemiol. 2009 Oct;38(5):1224-34. Epub 2009 Sep 7. PubMed PMID: 19737791; PubMed Central PMCID: PMC2800781.
3Keyes KM, Susser E, Cheslack-Postava K, Fountain C, Liu K, Bearman PS. Cohort effects explain the increase in autism diagnosis among children born from 1992 to 2003 in California. Int J Epidemiol. 2011 Dec 7. [Epub ahead of print] PubMed PMID: 22253308.
4Bresnahan M, Li G, Susser E. Hidden in plain sight. Int J Epidemiol. 2009 Oct;38(5):1172-4. PubMed PMID: 19797336.
5Brugha TS, McManus S, Bankart J, Scott F, Purdon S, Smith J, Bebbington P, Jenkins R, Meltzer H. Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen Psychiatry. 2011 May;68(5):459-65. PubMed PMID: 21536975.
The CDC has released the latest autism prevalence estimate. The estimate from children born in 2000 and using data from when they are 8 years old (2008) is 1 in 88, a 23% increase over the previous estimate (1 in 110 for children born in 1998). Here is the CDC press release.
CDC estimates 1 in 88 children in United States has been identified as having an autism spectrum disorder
CDC data help communities better serve these children
The Centers for Disease Control and Prevention estimates that 1 in 88 children in the United States has been identified as having an autism spectrum disorder (ASD), according to a new study released today that looked at 2008 data from 14 communities. Autism spectrum disorders are almost five times more common among boys than girls – with 1 in 54 boys identified.
The number of children identified with ASDs ranged from 1 in 210 children in Alabama to 1 in 47 children in Utah. The largest increases were among Hispanic and black children.
The report, Prevalence of Autism Spectrum Disorders – Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2008, provides autism prevalence estimates from 14 areas. It was published today in the Morbidity and Mortality Weekly Report.
“This information paints a picture of the magnitude of the condition across our country and helps us understand how communities identify children with autism,” said Health and Human Services (HHS) Secretary Kathleen Sebelius. “That is why HHS and our entire administration has been working hard to improve the lives of people living with autism spectrum disorders and their families by improving research, support, and services.”
“One thing the data tells us with certainty – there are many children and families who need help,” said CDC Director Thomas Frieden, M.D., M.P.H. “We must continue to track autism spectrum disorders because this is the information communities need to guide improvements in services to help children.”
The results of CDC’s study highlight the importance of the Obama administration’s efforts to address the needs of people with ASDs, including the work of the Interagency Autism Coordinating Committee (IACC) at the U.S. Department of Health and Human Services. The IACC’s charge is to facilitate ASD research, screening, intervention, and education. As part of this effort, the National Institutes of Health has invested in research to identify possible risk factors and effective therapies for people with ASDs.
Study results from the 2008 surveillance year show 11.3 per 1,000 8-year-old children have been identified as having an ASD. This marks a 23 percent increase since the last report in 2009. Some of this increase is due to the way children are identified, diagnosed and served in their communities, although exactly how much is due to these factors is unknown. “To understand more, we need to keep accelerating our research into risk factors and causes of autism spectrum disorders,” said Coleen Boyle, Ph.D., M.S.Hyg., director of CDC’s National Center on Birth Defects and Developmental Disabilities.
The study also shows more children are being diagnosed by age 3, an increase from 12 percent for children born in 1994 to 18 percent for children born in 2000. “Unfortunately, 40 percent of the children in this study aren’t getting a diagnosis until after age 4. We are working hard to change that,” said Boyle.
The most important thing for parents to do is to act quickly whenever there is a concern about a child’s development.
• Talk to your child’s doctor about your concerns.
• Call your local early intervention program or school system for an assessment.
• Remember you do not need a diagnosis to access services for your child.To learn more about this study, visit http://www.cdc.gov/autism.
For information on CDC’s tools to help families track their child’s development, visit http://www.cdc.gov/actearly
To learn more about the research CDC is doing on autism, visit http://www.cdc.gov/ncbddd/autism/research.html.
To learn more about the Administration’s commitment to combating autism, visit http://www.hhs.gov/autism/factsheet_autism_support.html.
The CDC will soon release new autism prevalence estimates. This much has been discussed online for some time since Disability Scoop published CDC Set To Release New Autism Numbers on March 9.
The “Canary Party” has put out a couple of press releases. One “New CDC Autism Numbers Coming Soon; Rate Increase to Over 1 in 100 Expected by The Canary Party ” and another (which appears to be submitted twice) “The Canary Party Expects CDC to Announce New Autism Rate of 1 in 88, and Believes CDC Likely to Declare “No Public Health Emergency” and “No Epidemic”” The Canary Party is an offshoot of the autism-is-caused-by vaccine organizations like SafeMinds (whose Mark Blaxill is quoted in the press releases).
Also, A-Champ sent out an email alert along similar lines.
These groups appear to be vying for media attention. By getting their press releases out before the embargo is lifted, they might be in a position to get media organizations to contact them for quotes.
It is not the most ethical way to obtain media attention. It also isn’t really that effective. One can tell this because, it didn’t work last time. Yes, multiple groups broke the embargo for the 1% prevalence estimate which came out in the journal Pediatrics in 2009. This was discussed at length here at Left Brain/Right Brain in Autism rate of 1 percent, and the embargo that wasn’t. The media discussed not the talking points of these groups, but the broken embargo. See When News Breaks On Autism, Who Gets It Out First? and Autism news raises question: When is an embargo not an embargo?
Interestingly, the Canary Party press release doesn’t mention mercury, thimerosal or vaccines. Just “The only plausible explanation for these rapid increases is a change in the environment affecting millions of American children” Which ignores a great deal of work published in the last 10 years, especially that of Prof. Peter Bearman’s group at Columbia which has quantified some of the social factors behind the increases observed.
For those who haven’t heard of the “Canary Party”, you are not alone. It is a small (under 5,000 facebook “likes”. Compare that to over 315,000 for the Democratic Party, or over 1 million likes for Autism Speaks).
Autism News Beat has also discussed the broken embargo in Embargo? What embargo?
note: I edited this article after publishing to complete an incomplete sentence in the first paragraph.
Dr. Robert Sears (Dr. Bob) is one of the more well-known Defeat Autism Now (DAN) doctors. This is a group of alternative medical practitioners who “treat” autism with a number of untested (and, thus, unproven) methods such as supplements, chelation, hyperbaric oxygen therapy, and others.
As a DAN practitioner, it won’t surprise most readers here that Dr. Bob takes a different view of vaccines than the mainstream. Dr. Bob Sears has a book out on alternatives to the standard vaccine schedule, The Vaccine Book: Making the Right Decision for Your Child. This approach has not been without criticism (for example, The Problem With Dr Bob’s Alternative Vaccine Schedule).
Dr. Bob has been associated with an outbreak of measles in San Diego, California a few years back. In specific, that the “index patient”, the child who was infected abroad during a family trip, was a patient of his practice. Note that people did not say that the child spread the infection in his office. Instead, According to the radio show “This American Life” and a short article in his hometown newspaper, the Orange County Register and, later, Seth Mnookin‘s book, The Panic Virus, note that the child who imported measles into San Diego from Switzerland was a patient of Dr. Sears.
Dr. Sears has recently (as in the past few days) contested this idea that the “index patient” for the San Diego outbreak was seen in his clinic. Which, as I noted above, is not what was discussed in, for example, The Panic Virus. In a comment on the Huffington Post blogs, Dr. Sears wrote:
“I will set the record straight. I was NOT the pediatrician who saw the measles patient and let him sit in my office. As far as I know, that occured in a San Diego pediatrician’s office. I don’t know whose. I was not involved in that at all. I haven’t read Seth Minooken’s book, NOR have I ever even spoken with Seth. So I’ve no idea what he’s said about me in his book. I actually had no idea that any of you were even wondering about this. No one’s brought it to my attention before this. I heard something about some journalist writing a book about vaccines, but hadn’t bothered to read it”
This brings up the question posed by Seth Mnookin in his book, The Panic Virus: “Who Decides Which Facts are True”.
Well, Mr. Mnookin is providing us with information to decide for ourselves. Mr. Mnookin provided the links to “This American Life” and the Orange County Register. In addition, Mr. Mnookin has provided us with a brief discussion of the exchanges between Dr. Sears and himself. All this in his article, Bob Sears: Bald-faced liar, devious dissembler, or both?
As to whether Dr. Bob Sears has ever spoken with Seth (emphasized with an all caps “NOR” in Dr. Bob Sears’ comment on Huffpo), Mr. Mnookin provides readers with a link to audio from one of his interviews with Dr. Sears. Mr. Mnookin wrote:
Now, there are a number of odd things about Sears’s comment. First, he denies something that I’ve never accused him of—not in my book, not in an interview, not in a speech: letting a patient infected with measles sit in his office. Then, he misspells my name, which is either an illustration of how little he cares about getting things right or of his deviousness (or both)—because while I assume it’s true he’s never spoken to Seth Minooken, he most definitely has spoken to Seth Mnookin. You don’t need to take my word for it; as you can hear here, I actually taped the interview. That interview was just one part of a long series of back and forths I had with Sears and various staff members in his office. I think they’re revealing—and, in light of Sears’s claim that he’s never spoken to me (or someone whose name sounds an awful lot like mine), they’re worth discussing.
Readers can read what Mr. Mnookin felt was “worth discussing” in his article: Bob Sears: Bald-faced liar, devious dissembler, or both?
A recent article on Disability Scoop discussed an upcoming CDC autism report. The MMWR’s(Morbidity and Mortality Weekly Reports) from the CDC have been one of the standards for autism prevalence for years. Each CDC prevalence estimate is calculated for a group of 8 year olds born in a certain year. For example, the last estimate was “Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, United States, 2006” for children born in 1998.
Every time a new CDC autism MMWR has come out, the prevalence estimates are higher. Every timer there are groups that point to the rising number of vaccines and mercury exposure from those vaccines. People point out that there is a correlation between mercury exposure (thimerosal) and the autism rates. The MMWR’s so far have been all for children born in the 1990’s, a period when the number of vaccines and the thimerosal exposure from those vaccines was increasing.
Here are the autism prevalence estimates from recent CDC reports:
2006 (birth year 1998) 9 per 1000
2004 (birth year 1996) 8 per 1000
2002 (birth year 1994) 6.6 per 1000
2000 (birth year 1992) 6.7 per 1000
Following this trend, the next report will be for children born in 2000, age 8 in 2008. From the perspective of testing the vaccine hypothesis, in particular the mercury/thimerosal hypothesis, this is the start of a new era. In 1999 the AAP recommended that thimerosal be removed from vaccines. By 2001, all infant vaccines with the exception of influenza were produced only in thimerosal-free versions. This means that children born in 2000, the cohort the CDC will likely report upon, received, on average, a lower exposure to thimersal than the previous groups.
If the mercury hypothesis were correct (and there already a great deal of evidence to say that it is *not* correct) the autism rate should go down. At the very least, it should stay the same as the group before–about 0.9%.
Of course we will hear claims like “but not all the thimerosal containing vaccines were gone for this group” and “but what about the influenza vaccine?” and more obvious excuses in case (at it seems likely) the prevalence goes up again.
All of these avoid the fact that the average thimerosal exposure will be much lower for this group than the previous (1998 birth year) group. The excuses amount to…well…how about a visual?
With thanks to Reuters for the image I am using.
Yes, goal posts will move. Nice idea putting them on wheels. Could save a lot of effort, but those promoting the mercury idea are already used to moving goalposts.
And what if the CDC also reports on birth year 2002 (they have reported two birth cohorts at the same time in the past)? Those goalposts might to have to move quite a bit.
Now consider a different perspective. Consider that each CDC report has been an undercount. They don’t do a “whole population” survey like was done in Korea recently. They don’t test all children, they rely upon records already in existance. The last CDC report found that about 23% of the children identified as autistic in the study did not have a diagnosis before the study. Clearly the United States has not been identifying all the autistics in the population. Given this, the rising autism prevalence estimates (and, yes, they are *estimates*) could be seen as an accomplishment. This is a position put forth by Prof. Richard Grinker. The rising prevalence estimates reflect a the U.S. getting better at identifying the autistic students in our schools.
Disability Scoop has an article: CDC Set To Release New Autism Numbers. This was posted last week, and it starts:
The Centers for Disease Control and Prevention are expected to unveil a new autism prevalence estimate as early as this month.
The agency currently says that 1 in 110 children have autism, a figure first released in late 2009. Now, less than three years later, the CDC is set for an update.
I had heard rumors that the next prevalence estimate would be much higher. Not higher than the Korean prevalence numbers, but a significant jump. But–I heard these rumors together with the prediction that the estimate would come out last year. So, rumors are worth what you pay for them.
The Coalition for Mercury Free Drugs (CoMeD) is an organization run by Mark and David Geiers. This is the father/son team which has promoted some of the most questionable research trying to link autism (and more) to mercury, especially in vaccines. They are also notorious for their “lupron protocol”, a therapy where a strong drug is used to reduce sex hormones in a bid to remove heavy metals from the body (if this doesn’t make sense to you, don’t worry about your understanding. It doesn’t make any sense).
CoMeD petitioned the secretary of health and human services (Kathleen Sebelius) to stop all use of thimerosal containing vaccines. The original petition was denied, and, now, Their appeal was dismissed.
We recognize plaintiffs’ genuine concern about thimerosal-preserved vaccines. But plaintiffs are not required to receive thimerosal-preserved vaccines; they can readily obtain thimerosal-free vaccines. They do not have standing to challenge FDA’s decision to allow other people to receive thimerosal-preserved vaccines. Plaintiffs may, of course, advocate that the Legislative and Executive Branches ban all thimerosal-preserved vaccines. But because plaintiffs are suffering no cognizable injury as a result of FDA’s decision to allow thimerosal-preserved vaccines, their lawsuit is not a proper subject for the Judiciary. We affirm the judgment of the District Court.
The decision ended simply: “We affirm the District Court’s judgment dismissing plaintiffs’ suit for lack of standing.”
Non profit organizations in the United States have to file tax forms and those become part of the public record. After leaving Thoughtful House, Andrew Wakefield formed a non-profit called the “Strategic Autism Initiative” (SAI). That was in 2010. The tax forms (form 990) don’t become public right away, so the form for 2010 has been only recently made available, and is available here.
Since the SAI was formed in 2010, we don’t know how much of the year they were paying salaries (for example).
They pulled in $226,000. We know $100k was from Generation Rescue from their form 990.
Wakefield was paid $16,667. But we don’t know for how many months. SAI was formed in 2010, so it is a partial salary. He claims 30 hours/week.
Assume the $16,667 is one month’s salary. That works out to $200k/year at 30 hr/week. That’s the equivalent of nearly $270k for a full-time (40 hour per week) which was his salary at TH before he was let go.
They had three research projects listed. Two seem to be the same–the “Somali project”. They have someone in the UK and someone in Minnesota. They spent about $30k on this project, which is supposed to include prevalence studies in Somalia.
They had three research projects listed. Two seem to be the same–the “Somali project”. They have someone in the UK and someone in Minnesota working on this. They spent about $30k in each location on this project, which is supposed to include prevalence studies in Somalia.
As to the people involved with the SAI:
Andrew Wakefield is president
James Moody is VP
Terri Arranga is secretary
Mark Blaxill is treasurer
Polly Tommy is director
Phil Rawlins is director
Only Wakefield and Arranga are paid (Arranga was paid $2,400 in 2010, listed as putting in 15 hours/week)
They spent $5K in legal fees. $25k in advertising.
It will be interesting to read the 2011 form 990 when that is available. For one thing, this will give salary information for a full year. Also to see how well they do collecting donations. $250k is impressive for a first year. As already noted, $100k is from Generation Rescue. How much of the rest is really just a transfer from other vaccines-caused-an-autism-epidemic orgs is unknown.
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