Showing posts with label vaccines. Show all posts
Showing posts with label vaccines. Show all posts

Monday, March 31, 2008

Audio: Interesting Show on Autism at "Studio 360"

"No matter how hard he tries he knows he can't fit into the NT [neurotypical] world."

That's how radio producer Tamar Brott describes Jonthan Mitchell, a 52-year-old writer who has Asperger's. He is very high-functioning on the autism spectrum, and he writes stories that delve into his feelings of alienation, longing, obsession and rejection of special education programs. A profile of Mitchell is the first five-minutes of an illuminating hour-long public radio program on the arts and society at Studio 360 with Kurt Andersen.

A key reason you might want to listen to the program is Andersen's conversation with Blythe Corbett, assistant professor of clinical psychiatry, at the M.I.N.D. Institute, University of California at Davis. The Institute is a leading venue for autism research, and Corbett discusses in very clear language how scientists are examining research trends in genetics, environmental and other threads of inquiry to help them understand the origins of autism spectrum disorders. (The gist is that researchers are in the early stages of their work, and they are looking at a combination of factors that could include genetics, environmental factors, parental age and more.)

Below, find an audio clip of the first 11 minutes of the episode, which profiles Mitchell and introduces the rest of the show:



Other parts of the show discuss an art project organized by the M.I.N.D. Institute, and discussions of Amanda Baggs, a well-known autistic video blogger and neurodiversity advocate, and the film Autism: The Musical.

Find the Studio 360 website with a writeup of this episode by clicking here.

Wednesday, March 05, 2008

McCain Says He Believes Vaccine Preservative Is Factor in Autism's Rise

Sen. John McCain of Arizona, the presumptive Republican presidential nominee, has gone on record as saying he believes that a mercury-containing preservative that was used in vaccines administered to young children is behind the rise in autism spectrum disorder.

The statement has created much buzz in the blogosphere because it taps into a raging controversy in the autism community about the causes of autism spectrum disorders and whether thimerosal, a mercury-containing preservative that is used in some vaccines, and used to be more widely used in routine shots very young children get, is a factor. While there are passionate advocates who believe there's evidence for this, there have also been a number of scientific studies published in recent years which have failed to establish this link, including a study published in January (see: California Study: Autism Cases Rise In Spite of Vaccine Changes).

McCain's statement came in response to a question at a forum Feb. 29 in the days before the Texas primary, according to the ABC News Political Punch blog. Here's a snippet from the coverage:

At a town hall meeting Friday in Texas, Sen. John McCain, R-Ariz., declared that "there’s strong evidence" that thimerosal, a mercury-based preservative that was once in many childhood vaccines, is responsible for the increased diagnoses of autism in the U.S. -- a position in stark contrast with the view of the medical establishment.

McCain was responding to a question from the mother of a boy with autism, who asked about a recent story that the U.S. Court of Federal Claims and the National Vaccine Injury Compensation Program had issued a judgment in favor of an unnamed child whose family claimed regressive encephalopathy and symptoms of autism were caused by thimerosal.

"We’ve been waiting for years for kind of a responsible answer to this question, and are hoping that you can help us out there," the woman said.

McCain said, per ABC News' Bret Hovell, that "It’s indisputable that (autism) is on the rise amongst children, the question is what’s causing it. And we go back and forth and there’s strong evidence that indicates that it’s got to do with a preservative in vaccines."

McCain said there’s "divided scientific opinion" on the matter, with "many on the other side that are credible scientists that are saying that’s not the cause of it."


The ABC News article goes on to cite a number of studies and statements from the medical establishment refuting McCain's view.

There is great interest among parents and families of people with autism spectrum disorders in this election year, and for good reason: the next president will have an influence over federal research dollars devoted to autism research; what kind of approach the Department of Education (and its experts on special education) will pursue in administering special education laws; how much federal aid to devote to education; what kinds of actions to take (or not take) in addressing the needs of disabled Americans; what kinds of judges to appoint to make decisions in cases involving disabled citizens including those with autism; and more (like whether to make autism an issue at all).

It's no wonder that more than half of Autism Bulletin readers who have voted in an unscientific poll cite "autism services" as a key issue in their vote. (See, Where Do Autism Services Fit Into Your Views on the Presidential Race?)

So McCain's views are interesting on this issue, and have raised hackles in the scientific community, as this post from The Chronicle of Higher Education indicates.

So far, this is McCain's only statement so far relating to auitsm during the campaign. A search on the McCain for President website using the word "autism" turns up a blank.

If you know of more statements by John McCain relating to autism, that involve more than the vaccine issue, please post a comment here.

Also see:

Obama Unveils Disabilities Plan, Includes Autism in Agenda

Autism Makes Ripple in Presidential Race as Clinton Promises to Spend $700 Million Per Year

Where Do Autism Services Fit Into Your Views on the Presidential Race?

Tuesday, January 08, 2008

California Study: Autism Cases Rise in Spite of Vaccine Changes

California public health researchers have found that the prevalence of autism spectrum disorders in young children has risen, even after doctors stopped using a mercury-containing preservative thimerosal in the vaccines babies receive.

The study, "Continuing Increases in Autism Reported to California Developmental Services System," is published in the January 2008 issue of Archives of General Psychiatry. The journal has made the full text of the article available online here.

The study asked: Since people are concerned that the mercury preservative used in vaccines causes autism, what happened after 1999, when the government and doctors recommended the nation stop using vaccines containing thimerosal for infant inoculations such as DTP (diphtheria, tetanus and pertussis) and hepatitis B?

Instead of seeing a decrease in autism diagnoses, the state Department of Developmental Services (DDS) saw an increase in the estimated prevalence of autism cases. For each quarter from 1995 through the end of 2003, the prevalence of autism increased from 0.6 to 2.9 per 1,000 live births. (The prevalence for all developmental disabilities including autism also increased, from 5.4 to 8.9 per 1,000.)

The study authors continue: "From 2004 through March 2007, when we estimate exposure to thimerosal-containing vaccines during infancy and early childhood declined, the prevalence of children aged 3 to 5 years receiving services for autism continued to increase from 3.0 to 4.1 per 1,000 lives births."

The authors report in their conclusion:

Infants and toddlers in the United States were exposed to more of the ethylmercury-containing preservative, thimerosal, after recommendations in 1991 for universal administration of the hepatitis B virus and Hib [Haemophilus influenzae type b] vaccines.

They have been exposed to less thimerosal since at least the national recommendation in 1999 for its removal from childhood vaccines. If thimerosal exposure is a primary cause of autism, then the prevalence of autism would be predicted to decrease as young children's exposure to thimerosal has sharply decreased to its lowest levels in decades. We have instead found that the prevalence of autism in children reported to the DDS has increased consistently for children born from 1989 through 2003, inclusive of the period when exposure to TCVs [thimerosal-containing vaccines] has declined.

Moreover, since 2004, the absolute increase and the rate of increase in DDS clients aged 3 to 5 years with autism were higher than those in DDS clients of the same ages with any eligible condition, including autism. These time trends are inconsistent with the hypothesis that thimerosal exposure is a primary cause of autism in California.


Context for the California Study

This is the latest in a series of published research articles that fail to find a causal link between thimerosal and autism. There have been numerous media reports, analysis pieces, opinion articles, and books urging parents to trust the research and get their kids vaccinated.

Meanwhile, a special court in Washington is hearing a series of cases arguing that evidence shows that vaccines harmed their children and demanding compensatory damages.

But while ABC News reports today that the latest California study "may be the latest nail in the coffin of a theory that draws a link between the mercury-containing vaccine additive thimerosal and autism," the controversy is likely to continue.

The same day as the research report came out, the advocacy group SafeMinds.org, which supports research on the "potential harmful effects of mercury and thimerosal," had posted this note about the California study:

SafeMinds arrives at a different interpretation of the findings, showing that the data can equally support a primary causative role of thimerosal if autism causation is multifactorial. Vaccine components and environmental mercury, as well as other toxicants, are additional likely candidates. Deficiencies of the DDS data and imprecise thimerosal exposure assumptions make determination of the contribution of thimerosal to autism rates difficult. The increase in autism cases reported by Schechter and Grether since the 1980s highlights the urgency of the autism epidemic and the need to institute a rigorous and comprehensive environmental factors research program.


Also see:

* Autism: Why the Debate Rages, an article by CBS News correspondent Sharyl Attkisson.

* Scientists Raise Voices Against Parents Vaccinophobia

* Medical Journal Traces Vaccine Controversy to Moment When Doctors Failed to Communicate Clearly About Risks

* Special Court to Hear Autism Case

Sunday, December 02, 2007

Advocates, Parents Among Those Appointed to Autism Committee at National Institutes of Health

One theme of the Combating Autism Act of 2006 was to do more to coordinate federal government efforts on autism research and diagnostic screening along with autism services and education programs. Following this directive, Mike Leavitt, the Bush Administration's secretary of Health and Human Services, on Nov. 27 announced 19 appointments to the government's Interagency Autism Coordinating Committee.

The committee's goal is to make sure government agencies are sharing information so they can coordinate their respective efforts on various autism-related programs. You can read Leavitt's full announcement by clicking here.

While the law calls for the director of the Centers for Disease Control to be appointed to this panel, Leavitt instead appointed another CDC official to represent the agency head, Julie Gerberding. (You can read the text of the Combating Autism Act here in a PDF file. For those of you interested in the specific section of the law pertaining to this committee, read to the end of this post.)

The committee chair is Thomas R. Insel, M.D., director of National Institutes for Mental Health. "The committee's first priority will be to develop a strategic plan for autism research that can guide public and private investments to make the greatest difference for families struggling with autism," Dr. Insel said in a statement.

Four Parents, One Autistic Adult Appointed to the Committee

The law calls for the committee to have one-third of its members come from the public at large, and at least one person with autism, one parent and one member of the autism advocacy organization. Levitt's six choices to fill these roles are below, with notes from the government's press release and some associated website links:

Stephen Shore, Ed.D., the executive director of Autism Spectrum Disorder Consulting. See his website at www.autismasperger.net. Shore has an autism spectrum disorder diagnosis. He is an education consultant who is an expert "on adult issues pertinent to education, relationships, employment, advocacy, and disclosure." Shore serves on the board of the Autism Society of America, as board president of the Asperger's Association of New England, and is on the board of directors for Unlocking Autism, the Autism Services Association of Massachusetts, MAAP Services, The College Internship Program, and the KEEN Foundation.

Parent Lee Grossman, the president and CEO of Autism Society of America (ASA), a leading advocacy organization based near Washington D.C. He is the parent of a young adult son with autism. Mr. Grossman is also the chair of the ASA Foundation and a member of the ASA Environmental Health Advisory Board.

Parent Christine McKee is a lawyer who has developed and manages an in-home therapy for her autistic child. She participates in monthly consultations with a Board Certified Behavior Analyst/Speech Pathologist. She applies the therapeutic measures in her daily parenting and childcare routines.

Parent Lyn Redwood is co-founder and president of the advocacy group Coalition for Safe Minds. The coalition is a private nonprofit organization "founded to investigate and raise awareness of the risks to infants and children of exposure to mercury from medical products, including thimerosal in vaccines." She is a nurse practitioner who has 25 years of experience, and began her advocacy efforts for autism research after her son was diagnosed with pervasive development disorder in 1999."

Parent and sibling Alison Tepper Singer is executive vice president of Autism Speaks and is a member of the board of directors. Prior to joining Autism Speaks, Ms. Singer spent 14 years at CNBC and NBC where she served in several positions. She has both a daughter and an older brother with autism, giving her long-term, personal experience with the disorder.

Yvette Janvier, M.D., is the medical director for Children's Specialized Hospital in New Jersey. Dr. Janvier is also a clinical assistant professor in the Department of Pediatrics, Robert Wood Johnson Medical School. Her specialties are autism and developmental and behavioral
pediatrics. Dr. Janvier is a fellow of the American Academy of Pediatrics.

Government Officials on Committee

Secretary Leavitt appointed 13 government officials and researchers to this committee. They are:

Duane Alexander, M.D., director of the National Institute of Child Health and Human Development at NIH. The Institute supports research on all stages of human development, from preconception to adulthood, to better understand the health of children, adults, families, and communities.

James Battey, M.D., is director of the National Institute on Deafness and Other Communications Disorders at NIH. The Institute supports biomedical and behavioral research and research training in the normal and disordered processes of hearing, balance, smell, taste, voice, speech, and language.

Ellen Blackwell is a social worker and health insurance specialist of the Division of Community and Institutional Services, Disabled and Elderly Health Programs Group, Center for Medicaid and State Operations, Centers for Medicare and Medicaid Services where she serves as an expert on policies that affect individuals with autism spectrum disorders.

Margaret Giannini, M.D., is director of the HHS Office on Disability. Dr. Giannini serves as advisor to the Secretary on HHS activities relating to disabilities. She is also a member of the Institute of Medicine of the National Academy of Sciences and fellow of the American Academy of Pediatrics.

Gail Houle, is associate division director of the Research-to-Practice Division, Early Childhood Programs, Office of Special Education Programs, Department of Education where she oversees programs for children with disabilities and their families funded through the Individual with Disabilities Education Act. Her expertise focuses on services for children with autism spectrum disorders.

Larke Huang is senior advisor on children and a licensed clinical-community psychologist who provides leadership on federal national policy pertaining to mental health and substance use issues for children, adolescents and families for the Substance Abuse and Mental Health Services Administration.

Thomas Insel, M.D., is director of the National Institute of Mental Health at NIH. The Institute's mission is to reduce the burden of mental illness and behavioral disorders through research on mind, brain, and behavior.

Story Landis is director of the National Institute of Neurological Disorders and Stroke at NIH. The Institute's focus is directed toward reducing the burden of neurological disease through research on the normal and diseased nervous system.

Cindy Lawler is scientific program director of the Cellular, Organs, and Systems Pathobiology Branch, Division of Extramural Research and Training, National Institute of Environmental Health Sciences at NIH. The Branch plans, directs, and evaluates the Institute's grant program that supports research and research training in environmental health.

Patricia Morrissey is commissioner of the Administration on Developmental Disabilities at the Administration for Children and Families, which seeks to improve services to and assure that individuals with developmental disabilities have opportunities to make their own choices, contribute to society, have supports to live independently, and are free of abuse, neglect, financial and sexual exploitation, and violations of their legal and human rights.

Edwin Trevathan, M.D., is director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC. NCBDDD is focused on identifying the causes of and preventing birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities. Dr. Trevathan is representing Julie Gerberding, M.D., M.P.H., director of the CDC, on the committee.

Peter van Dyck, M.D., M.P.H., is associate administrator of Maternal and Child Health at the Health Resources and Services Administration (HRSA). Dr. van Dyck oversees HRSA's Maternal and Child Health Bureau, which seeks to improve the health of mothers, children, and families, particularly those who are poor or lack access to care.

Elias Zerhouni, M.D., is director of the National Institutes of Health. A world renowned leader in the field of radiology and medicine, Dr. Zerhouni has spent his career providing clinical, scientific, and administrative leadership. He leads the nation's medical research agency and oversees the NIH's 27 Institutes and Centers with more than 18,000 employees.

Notes on This Panel from the Combating Autism Act

The law calls for the committee to meet at least twice a year, in public. Here's what the law says about its goals:

In carrying out its duties under this section, the Committee shall—

(1) develop and annually update a summary of advances in autism spectrum disorder research related to causes, prevention, treatment, early screening, diagnosis or rule out, intervention, and access to services and supports for individuals with autism spectrum disorder;


(2) monitor Federal activities with respect to autism spectrum disorder;


(3) make recommendations to the Secretary regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan developed under paragraph (5);


(4) make recommendations to the Secretary regarding public participation in decisions relating to autism spectrum disorder;


(5) develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research, including proposed budgetary requirements; and


(6) submit to the Congress such strategic plan and any updates to such plan.

Related Stories on Autism Bulletin:

CDC Director Cites Autism as Urgent Concern

Bush Signs Combating Autism Act

National Institutes of Health Reorganizes Autism Research Program


Federal Research Grants Shows Intensified Effort to Find Autism Clues, Treatments, NIH Says

Tuesday, October 02, 2007

Medical Journal Traces Vaccine Controversy to Moment When Doctors Failed to Communicate Clearly About Risks

The New England Journal of Medicine published an editorial in its September 27 issue that provides useful background information on the ongoing controversy over a mercury-containing vaccine preservative called thimerosal and whether it causes autism in vaccinated children. The piece is worth reading because it asserts that a botched effort by the American Academy of Pediatrics to assure the public that vaccines are safe has led to the problems we face now: a reduction in the number of children immunized, a distrust in scientists, and lengthy court battles.

The article leads a reader to conclude that no matter how many scientific studies fail to find a causal link between thimerosal to neurological disorders (and The New England Journal publishes the latest study in the same issue), the scientific and medical establishment will continue to face questions, criticisms and doubts on this issue.

In "Thimerosal and Vaccines—A Cautionary Tale," Dr. Paul A. Offit, chief of the Division of Infectious Diseases at Children's Hospital of Philadelphia, notes that the public took little notice of an amendment in the November 1997 bill reauthorizing the Food and Drug Administration, which required the FDA to "compile a list of drugs and foods that contain intentionally introduced mercury compounds and [to] provide a quantitative and qualitative analysis of the mercury compounds in the list." Offit explains:

Eighteen months later, in May 1999, the FDA found that by 6 months of age, infants could receive as much as 75 µg of mercury from three doses of the diphtheria–tetanus–pertussis vaccine, 75 µg from three doses of the Haemophilus influenzae type b vaccine, and 37.5 µg from three doses of the hepatitis B vaccine — a total of 187.5 µg of mercury. The use of mercury in vaccines wasn't new; thimerosal, an ethylmercury-containing preservative, had been used to prevent bacterial contamination since the 1930s.

To determine whether the amount of mercury in vaccines was safe, FDA scientists examined safety guidelines from three sources: their own agency, the Environmental Protection Agency, and the Agency for Toxic Substances and Disease Registry. They found safety guidelines for methylmercury (environmental mercury), but not for ethylmercury (thimerosal). Although these two molecules differ by only one carbon atom, the difference isn't trivial. Ethylmercury is excreted from the body much more quickly than methylmercury and is therefore much less likely to accumulate. For this reason, the safety guidelines that had been established for methylmercury weren't likely to be predictive of the safety of ethylmercury.

In mid-June 1999, FDA scientists held a meeting to discuss their findings. Present were representatives from the Centers for Disease Control and Prevention (CDC) and the American Academy of Pediatrics (AAP) — the organizations that are principally responsible for making vaccine recommendations for U.S. children. Several attendees left the meeting concerned that infants might be receiving too much mercury from vaccines. Although they were largely reassured by studies of children who had ingested large quantities of mercury from fish in their diet, they couldn't find a single study that compared neurologic outcomes in children who had received thimerosal-containing vaccines with those in children who had not.

On July 9, 1999, after much wrangling, the CDC and AAP decided to exercise the precautionary principle. They asked pharmaceutical companies to remove thimerosal from vaccines as quickly as possible; in the interim, they asked doctors to delay the birth dose of hepatitis B vaccine in children who weren't at risk for hepatitis. A press release issued by the AAP revealed the ambivalence among its members: "Parents should not worry about the safety of vaccines," it read. "The current levels of thimerosal will not hurt children, but reducing those levels will make safe vaccines even safer. While our current immunization strategies are safe, we have an opportunity to increase the margin of safety." Critics wondered how removing something that hadn't been found to be unsafe could make vaccines safer. But many parents, frightened by a sudden change in policy, reasoned that thimerosal was targeted because it was harmful — and their faith in the vaccine infrastructure was shaken. Doctors were also confused by the recommendation.

So what does all this mean? It suggests that doctors who were in a position to give advice about the safety of vaccines faced a moment when they had to try to communicate to the public both their vigilance on the matter of mercury contained in the vaccine preservatives and to express reassurance about the safety of an essential public health vaccination program. In retrospect, it reads like a very difficult challenge to communicate both ideas at the same time.

And, Offit notes, the pediatricians made a difficult situation worse with their ambivalent words. "The thimerosal controversy should stand as a cautionary tale of how not to communicate theoretical risks to the public; otherwise, the lesson inherent in the collateral damage caused by [thimerosal's] precipitous removal will remain unlearned."

Even if you disagree with Offit's characterization that removing thimerosal from vaccines is precipitous, it's likely that you can understand why vaccines are an issue fraught with emotion and tension for the autism community searching for answers, understanding and causes for their loved one's condition.

Policy makers and the research establishment seem to understand this, too. And so the medical community continues researching the issue. You can read the abstract to the latest study, by William W. Thompson Ph.D. and 17 other researchers with CDC backing publishing a study in the same issue of The Journal titled, "Early Thimerosal Exposure and Neuropsychological Outcomes at 7 to 10 Years" which looked at 1,047 kids and found 42 with neuropsychological conditions (without assessing whether any had autism spectrum disorders). It concludes: "Our study does not support a causal association between early exposure to mercury from thimerosal-containing vaccines and immune globulins and deficits in neuropsychological functioning at the age of 7 to 10 years."

This result echoes some other studies, but the trouble is that trust is hard for some advocates to find. And the voices of parents who distrust the research establishment don't hesitate to launch critiques. Cindy Waeltermann, director of AutismLink.com, an advocacy group which has opened an autism services center in Pittsburgh, criticized the researchers for not assessing whether the 42 kids with abnormalities detected had autism, and added:

The study assessed ONLY those children who were exposed to mercury during the first 28 days to 7 months of life. The autism community has always asserted that autism is caused by a build up of mercury in the system as a result of multiple vaccinations over the first two years of life. This study did not address this hypothesis. ... The CDC, which is supposed to be the quintessential research organization of modern times has once again proven its fallibility.... This study was geared to a particular outcome before it even began.

Also see:

Vaccine Court Starts Hearing Autism Case

Scientists Raise Voices Against Autism Parents' Vaccinophobia

Sunday, August 12, 2007

Federal Research Grants Show Intensified Effort to Find Autism Clues, Treatments, NIH Says

The research grants recently announced by the National Institutes of Health (NIH) add up to $66 million over the next five years, and the round of funding -- plus a second round next year -- demonstrates the federal government's commitment to finding causes and new treatments for autism spectrum disorders, according to the agency's program manager for autism research.

"It shows the NIH's commitment to intensify our efforts to find causes and new treatments for autism," said Alice Kau, program manager for autism at the National Institute of Child Health and Human Development, a section of the NIH.

The grants announced Aug. 2 went to six universities around the country; in total, the researchers will receive about $13.3 million per year for the next five years, Kau said in an interview with Autism Bulletin. The NIH soon will begin evaluating another group of grant funding applications and plans to announce another round of research awards in 2008, which will increase the agency's spending on autism research to approximately $24 million annually, she said.

The research awards this year, and in 2008, represent an effort to establish "autism centers of excellence" or "ACEs" and to consolidate two existing research programs, called STAART, or Studies to Advance Autism Research and Treatment, and CPEA, or Collaborative Programs of Excellence in Autism. (See the press release from Aug. 2 here.)

The STAART program established eight research centers around the country: Boston University, Kennedy Krieger Institute, Mt. Sinai Medical School, University of California at Los Angeles, University of North Carolina at Chapel Hill, University of Rochester, University of Washington and Yale University. This website about the STAART program has more background about the research going on at some of these facilities, including outpatient studies that examine relationship building interventions, drug trials and the relationship between behavior and diet in young children.

This website has more information about the CPEA research efforts, including the status of specific research projects (whether peer-reviewed papers have been published yet, for example). These research efforts are exploring a range of issues, including genetic traits of autism and whether there's a causal link between the Measles-Mumps-Rubella vaccine and autism spectrum disorders. The website indicates it was last updated in September 2006.

Of course, the research takes time before it yields results that affect the lives of people with autism and families of those people. Kau said we'll have to wait a while before we see the results of these and other research studies about autism. "It's still very exciting," she said of the latest funding round.

Also see:

* National Institutes of Health Reorganizes Autism Research Program, from Autism Bulletin

* Autism Activities at NIH, federal government website last updated October 2006.

* National Institutes of Health, press release from October 25, 2001, "New Children's Environmental Health Centers to Study Causes of Autism and Other Disorders," link here.

Monday, June 18, 2007

The Autism Puzzle Shows Its Complexity in Autism Speaks Controversy

That members of the same family disagree on how best to deal with a child's autism is not news. (Concerns about divorce among parents of autistic kids recently led the National Autism Association to announce a new program to provide marriage counseling to keep parents together.)

What is news is that members of the Wright family -- founders of Autism Speaks, arguably the nation's most successful charity at raising public awareness, advocating for Congressional support and collecting dollars for autism research -- are disagreeing, vehemently, in public, about the way to deal with every child's autism. The New York Times' front-page story today, "Autism Debate Strains a Family and Its Charity" illustrates how people united in their desire to help people with autism can come into conflict.

The quarrel between Bob and Suzanne Wright and their daughter Katie Wright, stems from comments Katie made to David Kirby, author of "Evidence of Harm," which argues that mercury in vaccines given to young children is a cause of rising autism rates. (You can access a portion of the interview here via AutismMedia.org.) Katie's son Christian has autism and his diagnosis in early 2004 led her parents to form Autism Speaks. The organization has absorbed other advocacy and fund-raising organizations including the National Alliance for Autism Research and recently Cure Autism Now.

In her interview with Kirby, Katie Wright praised both her parents as wonderful, strong advocates. And she insisted she was not commenting as a representative for Autism Speaks; but at the same time, she argued that it was time for groups like Autism Speaks to put genetics-related research on the back burner in favor of looking into the possible environmental causes for autism spectrum disorders. "I think that people who have been doing this a long time, pioneers who were doing this in the early 1980s when nobody was paying attention, these people are more conservative researchers and parents, are so resistant to change, I think they are frightened that they could have been going down the wrong path," she said, adding, "It's clear to me that we have been going down the wrong path in research. ... It's time to step aside" and let the parents of younger children take the lead, she said.

Her remarks sparked dueling statements, first from Autism Speaks disavowing Katie's remarks as not representing the group. Then Katie Wright posted a statement expressing disappointment in Autism Speaks, and reasserting that "it is my greatest hope that Autism Speaks as well as the scientific and medical community will fulfill their promises and commit themselves to the environmental, biomedical and therapeutic research so urgently needed." (The quote comes from a longer statement posted on the home page of the National Autism Association.)

The Wright's family drama illustrates a number of themes, not the least of which is the desperate urgency that parents like Katie feel to help their children. That's undeniable and widely shared. But it's also clear that the biggest challenge facing the autism community -- including people with autism, their families, clinicians, educators, researchers, service providers, advocates, policy makers, advocates -- is that its members frequently and loudly present themselves as belonging to several different communities.

There are people who believe in behavioral approaches. Those who see dietary restrictions and supplements as essential. Those who believe environmental causes, like mercury preservatives in vaccines, are autism's cause and therefore must be the primary focus for research and experimental treatments. Those who see the benefits of prescription medication. Those who see a combination of some of these as the way to go. Others who emphasize acceptance as the most important approach. And that doesn't cover everyone.

So it's not difficult to find, say, a group of families who have autistic children and find all of these beliefs and varied approaches represented in the gathering. They may be united in their desire to help their children, but they are not united in how to go about it.

Surely the complex and varied nature of autism spectrum disorders, and how they affect the lives of the people touched by them, makes this dynamic impossible to avoid -- at least until we have more answers. More clarity about what autism is, and what different autistic subtypes are. More information about its causes. More answers about effective treatments that resonate with more people. More supports in more communities for more individuals and their families. And more understanding.

Monday, June 11, 2007

Vaccine Court Starts Hearing Autism Case, and Other News Briefs

The United States Court of Federal Claims opened its first test case into the allegation that childhood vaccines such as measles-mumps-rubella shots, or the mercury-containing preservative thimerosal, led to children developing autism. This report from the Associated Press, carried on The New York Times website, explains that the court will hear nine test cases that represent almost 5,000 other vaccine damages claims across the country.

The report foreshadows what is to come in court over the coming months: families whose children have suffered greatly will present evidence that there could be a causal link between the vaccines and their children's condition. Lawyers for the government will argue that the causation theories lack scientific research or factual evidence to support them.

For more background on the vaccine court case, and information about accessing available court records and proceedings, see this article. For The Washington Post's take on the case, see this article. And for a critique of The Post's article and some links to past research studies on the vaccine-autism issue, see this article at STATS.org, the statistical fact-checkers at George Mason University.

More on the 'Epidemic' Debate

Just in time for the court case, The Times also today published an Op-Ed that seeks to debunk the idea that there's an autism epidemic. But while the authors outline a clear thesis, their argument is not new and it's not clear what the piece adds to any public policy debate.

In "A Spectrum of Disputes," by Paul T. Shattuck, an assistant professor at Washington University's School of Social Work, and Maureen Durkin, an epidemiologist at the University of Wisconsin, report that they have analyzed mountains of data, including school records in all 50 states. They have determined that because of relatively recent rules changes (schools started counting autism cases in 1991), and because school and medical records don't necessarily match, it's possible that the nation has become better at counting autism spectrum disorder cases -- and therefore one cannot say there's an epidemic.

Read the article online, for a limited time, by going to the Times site here.

After a long discourse on their research methods and findings, the author's conclude:

We want to be very clear: our results do not mean we have nothing to worry about. Scientific and clinical advances have improved our ability to identify autistic children and to differentiate their unique needs from those of children with other types of developmental disabilities. But schools and other social service systems are unable to keep pace with these changes or give the children the help they need.

Research to discover what causes autism, including possible environmental triggers, must be a top priority. However, autism is not purely a medical puzzle — as we invest in new ways of understanding autism, we have a corresponding responsibility to invest in the capacity of our schools, medical centers and social workers to provide up-to-date treatment for those with the condition and support services for their families. In the end, we should not have to deliver a verdict on whether there is an epidemic to fulfill these obligations.


If we don't have to deliver a verdict on whether there's an epidemic, why bother with this essay, why now? Because the public's attention is focused on the vaccine court case? (The op-ed writers say they fear that the court case will drag out a debate about whether we face an epidemic.)

Do parents and advocates need the label of an epidemic to win support for better treatment options? Does the country need to see that "e-word" to sense the urgency? The article doesn't suggest a thought about this, at least not explicitly.

For more on this subject, see:

Media Picks Up "Unstrange Minds" as Hook to Debunk Cries of "Autism Epidemic"


Good Showing for Autism Documentary

"Autism: The Musical" a documentary that showcases the lives of five autistic children and their families in Los Angeles, took home an audience award at last weekend's Newport Film Festival. That's according to the director, Tricia Regan.

Regan also said in an e-mail message that HBO had agreed to televise the documentary in April 2008.

Read more about the film here.

Wednesday, June 06, 2007

Special Federal Court to Hear Autism Case on June 11

The online archive of documents in the "Autism Docket" at the United States Court of Federal Claims shows a list going back five years, though the claims that vaccines cause autism are older than that. This special court in Washington, D.C., set up by a 1986 act of Congress, exists to hear claims that vaccines cause injuries. On Monday, June 11 at 9 a.m., in a 450-seat courtroom, lawyers will begin presenting evidence to support their argument that the measles-mumps-rubella (MMR) vaccine, when administered with other vaccines containing the mercury-containing preservative thimerosal, cause children to develop autism. (Find information about following the court proceedings at the end of this article.)

As this piece in the June 5 edition of the legal news site Law.com explains, the so-called Omnibus Autism Proceeding is a historic legal case, a test of the 1986 law designed to reward damages to people injured by vaccines while holding drug companies who make the vaccines harmless (the government collects money for a vaccine damages fund). One reason this case is such a big deal is the scale: approximately 4,800 autism cases pending at the vaccine court, far more than any other type of injury.

A scan of some recent documents in the Autism Docket shows how difficult it can be to collect thousands of people's cases into one legal process, as the judges, or special masters as they are called, have been trying to do in this case. On Monday, the lawyers in the court will be arguing just one child's test case (that of Theresa Cedillo, in a case called Cedillo v. Secretary of Health and Human Services), and just one theory of vaccine injury (the theory that MMR vaccine+thimerosal in vaccines=autism). Other theories include MMR vaccine by itself causes autism and that thimerosal-laced vaccines cause autism, and the court expects to hear those later, according to this update published May 25 (it's a 9-page PDF file).

And as many readers will know, there have been a number of studies by government and academic researchers which have failed to find a vaccine-autism link. At the same time, strong voices like those of David Kirby, the author of Evidence of Harm, and advocacy groups such as SafeMinds.org, have emerged to cast doubts on those research efforts and the motives of the researchers and organizations involved. (See this press release, "University of Missouri Study on Link Between Autism and Mercury a Discredit to Sound Science," for a recent example. The university's own press release about its research, "Study Finds No Link Between Autism and Thimerosal," is here.)

The dueling press releases are but a symbol of the media battle that's been playing out for some time, and which we should expect to pick up in the coming days as the court session begins.

It's begun already. This piece in The Boston Sunday Globe warns Americans that the autism vaccine case, if it goes the wrong way, threatens the whole vaccine industry; the author argues that negative judgments and big plaintiff awards discourage drug makers from investing in new vaccines -- even though they don't have to pay the vaccine damages themselves. And Arthur Allen, the author of a recent book celebrating the history of vaccines, warns in this piece in Slate.com that because the special vaccine court's legal standards lack the rigor of the scientific community, it's not hard to imagine the autism plaintiffs winning big. (He also takes some proponents of the autism-vaccine link to the verbal woodshed.)

You can listen to the court proceedings for yourself, or read court session transcripts, starting June 11. Go to the court's website and register for access to a live, via-telephone, audio feed. Or access transcripts promised to be posted in a timely manner. Find information on audio feeds, and to register, click here. For other information, see this court website.

Also see:

Scientists Raise Voices Against Autism Parents' Vaccinophobia

Wednesday, April 18, 2007

CDC Director Cites Autism as Urgent Concern, and Other News

Autism is an urgent priority for the Centers for Disease Control, according to director Dr. Julie Gerberding (pictured at left). Gerberding told a Senate panel on April 18 in Washington that she understands the frustrations of parents and families of people with autism spectrum disorders that there are not available "more answers about the causes and possible cures," she said, according to a report in The Atlanta Journal-Constitution (see article online here).

Gerberding also said: "The profound lifelong impact of autism spectrum disorders, tremendous costs to the affected individuals and their families, the lack of known causes or cures and concerns about the increased rates of diagnosis all make autism spectrum disorders one of our urgent realities."

The Journal-Constitution added:
"Although the CDC has been criticized by some autism activists and members of Congress, Gerberding said the Atlanta-based agency is best equipped to do the surveillance and research needed to understand and respond to the disorder."

Gerberding was speaking to the Senate panel while elsewhere in Washington, The Institute of Medicine was holding a special workshop on opportunities for researching environmental triggers for autism. The Institute website said it was expecting to set up space for an overflow crowd, based on its fully subscribed preregistration process.

For a preview of this autism-environment workshop, see here.

OTHER NEWS HIGHLIGHTS: Bills in Congress

There was talk in the House this week about two bills:

Rep. Michael F. Doyle, D-Penn., filed HR 1881, an act "to improve support and services for individuals with autism and their families." Doyle, who is from the Pittsburgh area, filed the bill on April 17 with three co-sponsors, New York Democrat Eliot Engel, New Jersey Republican Christopher Smith and Mississippi Republican Charles "Chip" Pickering.

The bill would spend an estimated $350 million to improve services for people with autism and their families, according to an online report from the Pittsburgh Post-Gazette. See the report here. While the newspaper doesn't cite a companion bill in the Senate, Doyle's proposal sounds like one unveiled last month by Senators Hillary Clinton and Wayne Allard. For more on that proposal, called The "Expanding the Promise for Individuals with Autism Act," click here.

Smith told the Post-Gazette he is optimistic that President Bush will support this kind of legislation.

In another piece of legislative news, the Atlanta Journal-Constitution story cited above reported that two House members, Dave Weldon, a Florida Republican, and Carolyn Maloney, a New York Democrat, planned to reintroduce a bill they filed last year to end what they call a conflict of interest at the Centers for Disease Control relating to vaccines: that the agency is responsible for both promoting vaccines and ensuring their safety, the newspaper said. The bill failed last year.

Pennsylvania Bill Would Require Insurers to Cover Autism Treatment

At the state Capitol in Harrisburg, Pennsylvania House Speaker Dennis J. O'Brien, who has an autistic nephew, told a gathering of several hundred autism advocates that he was pursuing "legislation that would require private health insurers to cover treatment" for autism spectrum disorders, the Associated Press reported. See the report here, via CentreDaily.com. The AP's estimates suggest that when applying the latest CDC autism prevalence figures of 1 in 150 American children, that means approximately 560,000 children and young adults have autism.

Canada's Top Court Won't Hear Case Brought by Parents of Autistic Kids

A group of Ontario parents have been seeking court ordered support for behavioral therapies which in the United States is typically called ABA (applied behavior analysis) but in Canada is sometimes called IBI for intensive behavioral intervention. The Supreme Court of Canada said April 13 that it would not hear the parents' latest appeal in the case.

The Ontario Autism Coalition says on its home page that while the court would not hear the case, the advocates would continue to press for legislative relief to support these therapies under Canada's national health care plan.

Read press reports here on the court decision here in the Toronto Star and here from the Sarnia, Ontario Observer.

Also see:

Canadian Parliament Panel Urges New National Policy


Tuesday, March 27, 2007

Institute of Medicine to Discuss Investigating Autism-Environment Link

The Forum on Neuroscience and Nervous Systems Disorders, a part of the Institute of Medicine in Washington, D.C., is hosting a workshop on April 18 and 19 to discuss research strategies for exploring the potential relationship between autism and the environment.

The two-day workshop is open to the public and comes at the request of U.S. Secretary of Health and Human Services Mike Leavitt, according to the Institute of Medicine website (see it here, where you can access both a "statement of task" and a workshop agenda). The workshop will focus on these three questions:

  1. What are the most promising scientific opportunities for improving the understanding of potential environmental factors in autism?
  2. What scientific tools and technologies are available, what interdisciplinary research approaches are needed, and what further infrastructure investments will be necessary in the short- and long-term to be able to explore potential relationships between autism and environmental factors?
  3. What opportunities exist for public-private partnerships in the support and conduct of the research?

The agenda includes participants from government research bodies such as the National Institute of Mental Health, the National Institute of Environmental Health Sciences, as well as scientists and academics from institutions such as Vanderbilt University; the M.I.N.D. Institute from the University of California at Davis; Harvard Medical School; Mount Sinai School of Medicine; Columbia University; University of Arizona; the J. Craig Venter Institute for genomics research; Baylor College of Medicine; University of Rochester Medical Center. That's on the first day.

Autism advocates are also on the agenda, including Laura Bono, a board member of the National Autism Association and Sallie Bernard, the co-founder of SafeMinds, or Sensible Action for Ending Mercury-Induced Neurological Disorders, who is a board member at Autism Speaks.

This is interesting because both SafeMinds and the National Autism Association have criticized past statements by the Institute of Medicine that concluded there was no causal link between the measles-mumps-rubella vaccine and autism. You can view conclusions of a 2004 Institute of Medicine report here. SafeMinds has a list of press releases here that criticizes that finding and the authors of it, alleging conflicts of interest.

On its website (see here), the National Autism Association notes that this Institute of Medicine workshop, to be held right before a Defeat Autism Now (DAN) conference, formed with its leaders' participation. Here's what the group has to say:

Unlike the 2004 IOM Committee, the workshop group will not address causation or issue any formal recommendations. Also, it will not discuss the efficacy of any treatments. Rather, there will be presentations and discussions on strategies for research focusing on the potential relationship between autism and an array of environmental exposures.

A publicly available summary of the presentations and discussions made during the workshop will be prepared by a rapporteur and will reflect what transpired at the workshop. It will be published by the National Academies Press in the early Fall of 2007.

Laura Bono of the National Autism Association and Mark Blaxill of SafeMinds were two of three advocates invited to serve on the workshop planning committee. They were tasked with helping to develop the meeting agenda and presenters.

Laura and Mark made it their primary objective to direct the workshop toward the most relevant research areas to our community that have historically been overlooked by federal health agencies. In addition, Laura has been asked to give a statement at the workshop on the Perspectives of the Advocacy Community.


Wednesday, February 07, 2007

Scientists Raise Voices Against Autism Parents' Vaccinophobia

A series of recent articles shows that scientists and public health advocates are finding their voice in advocating that all children get vaccinated against contagious diseases in spite of the fears of some parents that the shots are dangerous and could cause autism. Not all of the articles mention the fear wrought by one British scientist's theory published in 1998, and later disputed, that the mercury-containing preservative thimerosal in the some vaccines suggested a link between the vaccine and autism, but this "Wakefield study" is a part of the subtext.

"Fact: no link of vaccine, autism" is the headline to an op-ed in The Philadelphia Inquirer this week by Arthur Caplan, professor of bioethics at the University of Pennsylvania, and co-director of the Ethics and Vaccines Project there. Caplan calls the autism-vaccine theory a myth and writes:

This urban legend has had very real - and terrible - consequences. It has led, and continues to lead, many parents to avoid getting their kids and themselves vaccinated against life-threatening diseases. The failure to vaccinate has caused many preventable deaths and avoidable hospitalizations from measles, whooping cough, diphtheria, flu, hepatitis and meningitis. And fear of vaccines puts each one of us at risk that we, our children or grandchildren will become part of a deadly outbreak triggered by someone whose parents avoided getting their child vaccinated for fear of autism.

Recent research on many fronts in medicine and science has nailed the coffin shut on the mercury-in-vaccines-causes-autism hypothesis. The connection is just not there. Perhaps the key fact, which has garnered little attention, is that thimerosal has been removed from vaccines in this and other countries for many years, with no obvious impact on the incidence of autism.

You can read Caplan's article here. It appeared Feb. 6, just two days after The New York Times Book Review assessed the new book "Vaccine: The Controversial Story of Medicine's Greatest Lifesaver," by Arthur Allen. In this review, David Oshinsky, the author of the Pulitzer Prize-winning history work "Polio: An American Story," says that Allen has written a "splendid book" that aptly captures the risk-reward calculus that has always been part of the administration of vaccines since Edward Jenner successfully immunized a child against smallpox in 1796 England.

Allen's book recounts the religious, economic and other arguments against the smallpox vaccine (Napoleon loved it for his troops), the book reviewer says; current anti-vaccination sentiments have their roots in "the general fallout from catastrophes like Watergate and Vietnam, which undermined institutional authority across the board. ... The public's portrait of a medical researcher had turned from the selfless and independent [Jonas] Salk working on behalf of children to that of a lab-coated lackey from a drug giant conspiring to hide the dangers of products that are slickly marketed and wildly overpriced." The reviewer concludes:

To a large extent, says Allen, this antivaccination impulse is fueled by an ignorance of the past. Vaccines have done their job so well that most parents today are blissfully unaware of the diseases their children are being inoculated against. The end result is a culture that has become increasingly risk-averse regarding vaccination because people have greater trouble grasping the reward.

The problem appears to be growing. As more children go unvaccinated in the United States, there has been a rise in vaccine-preventable diseases. Meanwhile, fewer pharmaceutical companies are now producing vaccines, citing the high cost of testing, diminishing markets and a fear of litigation. For Allen, a reversal of these trends will require something long overdue: a frank national discussion about the risks and benefits of vaccination. His splendid book is a smart place to begin.


Autism is not mentioned in the review of this book, but we know it's on the author's mind. Last month, Arthur Allen penned one of several stories that picked up a thread in the book "Unstrange Minds," by anthropologist Roy Richard Grinker, to argue against the idea of an autism epidemic. You can read more about that issue here.

Scientists are doing more than writing histories like Allen and citing studies to argue in favor of the public health benefits of vaccines like Caplan. A team of researchers from the Stanford University Medical School just published a study in the February issue of Nature Reviews Neuroscience on the way the media covered news of scientific research and discoveries about autism. The researchers said they found a disconnect, as Stanford reports on its website:

While 41 percent of research funding and published scientific papers on autism dealt with brain and behavior research, only 11 percent of newspaper stories in the United States, United Kingdom and Canada dealt with those issues. Instead, 48 percent of the media coverage dealt with environmental causes of autism, particularly the childhood MMR vaccine for measles, mumps and rubella that was once linked with autism in a widely refuted study. Only 13 percent of published research was about environmental triggers of autism.
You can read an abstract of the study, "Interacting and paradoxical forces in neuroscience and society," by Judy Illes, Joachim Hallmayer and Jennifer Singh here, and the Stanford press release here.

The researchers suggest is that it's difficult to get the message out when the media doesn't prioritize coverage of issues the same way that scientists do. So it's incumbent on people like Caplan and Allen to bang their drums of scientific and public health advocacy. Illes, Hallmayer and Singh might say that they can't count on the media to do it for them.

(One interesting aside about the Stanford paper: it notes that media coverage about the 1998 paper by Wakefield eventually led to studies that refuted his findings and cited the safety of vaccines. And as Caplan notes in his newspaper column, it also led to the removal of thimerosal from vaccines. If it were not for the media coverage of the autism-vaccine controversy, one could ask, would these things have occurred? Would the drop in vaccinations be even more precipitous?)

Still, even with all the scientific research surrounding this issue, it can be difficult to take one's child to the doctor's office for a shot. Kristina Chew, who is a PhD and blogs about her life as the mother of an autistic son, wrote about this difficulty in her blog Autism Vox on Feb. 6:

Vaccine” and “autism” had become for me—have become in the public psyche—not merely linked. These two words, which have nothing intrinsically to do with each other, have become equated, and because of coincidence, of a correlation that seems to contain a clue to causation: An 18-month-old child receives her or his immunizations. An 18-month-old child is noticed to not be playing in varied ways, or interacting, or speaking. The parents know they have “done everything” to ensure their child’s health and development, have followed the advice of the pediatrician exactingly, and then some, so it must be some external agent, some mysterious force, that has caused this terrible change in a child.

I think, that is, it is possible to understand why so many parents believe in a vaccine-autism link. What I am trying still to understand, is how to dispute such a link; as Professor Caplan’s op-ed suggests, appeals to the evidence of science have yet to be effective.

So earlier in her son's life, she demurred from having him vaccinated. Later, when it came time recently to enroll her son in a new school, she took him for his vaccine shots.

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