Myth, Science, and Autism: A Message from the AAP
February 18, 2008 by Kristina Chew, PhD
Filed under Health
Parents don’t cause autism and neither do vaccines.
Further: More and more evidence is being found that rejects the hypothesis that there is a link between autism and mercury; more and more evidence is also being found that rejects the hypothesis that there is a link between autism and the MMR vaccine.
Nonetheless: Proponents of the hypothesis that a vaccine or something in vaccines (such as mercury in the form of the preservative thimerosal) causes autism remain as vocal as ever about their views, which they make known via full-page ads in national newspapers; celebrities such as Jenny McCarthy; and press releases issued post-haste by “mercury causes autism” organization such as Safe Minds.
Those who subscribe to such hypotheses of autism causation tend, too, to voice distrust about pharmeceutical companies (referred to as “Big Pharma”); some even go so far as to imagine conspiracies (among government officials and agencies) and to see themselves as maverick crusaders like Upton Sinclair, author of The Jungle, as the “little guy” unearthing massive corruption that is being covered up by the bigwigs, by those with power and authority. No wonder, then, that proponents of a vaccine/mercury-autism link, greeted the first episode of a new ABC legal drama, Eli Stone, with great gratefulness. In this first episode, lawyer Stone wins a $5.2 million verdict for a mother who believes that her son became autistic from a mercury-based substance in a vaccine, and proponents of a vaccine/mercury-autism link proclaimed the show’s main character the “new patron saint of autism, and thus showed the fervor of their belief, and also a tendency to confuse fact with fiction, seeing as how only actual, real people are candidates for sainthood.
The American Academy of Pediatrics (AAP) does not confuse fact with fiction; in justifiable concern about the misinformation about vaccines and autism that might be spread by the Eli Stone TV show, the AAP sent a letter to ABC asking for the show to be cancelled, and lifted the embargo early on a new study in Pediatrics which shows that the ethyl mercury previously used in vaccines as a preservative, is excreted much faster from infants’ bodies than other forms of mercury in the environment. The AAP is quite aware about parental concerns about autism and, last October, called for universal screening of young children for autism, as well as a report on treatments for children with autism spectrum disorders. Well aware of the amount of misinformation about vaccines and autism circulating in the public sphere, the AAP has sent out a request to hear from parents who have an autistic child and who are in support of immunizations, or parents whose child has a vaccine-preventable illness; parents who might wish to speak on behalf of the AAP in either capacity can email the AAP by clicking here (details below, at the end of this post). You can also join a Facebook group for parents of autistic children who support immunizations.
Just in the past few weeks, eleven children in the San Diego area have contracted measles; none had been vaccinated, either due to their being babies too young to receive a measles inoculation, or because their parents were concerned about a vaccine-autism link. We know a number of families who have just had babies and the question of “to vaccinate or not” is very much on their minds. When a doctor, Nancy Minshew, the Director of the University of Pittsburgh’s Center for Excellence in Autism Research, said publicly that autism is not caused by vaccinations, proponents of a vaccine/mercury-autism link were quick to express outrage of the tar and feathers sort. In the February 17th New York Times, the public editor, Clark Hoyt, considered the paper’s coverage of the Eli Stone TV show in asking “When does fairness demand that a newspaper walk down the middle in a scientific dispute, and when does responsibility demand that it take sides?”. Hoyt noted that an article by culture reporter Ed Wyatt
….made clear that there is a debate but did not give equal weight to the two sides. The Times has not since 2005, when two reporters investigated every scientific study and thousands of documents from parents convinced of a link between autism and vaccines, and came down pretty clearly on the side of the scientists.
Wyatt said he relied on that report and read extensively about autism when he got the first hint of what the “Eli Stone” episode would say. “The show seems to portray it as, ‘No one knows,’ ” he said. “My conclusion was that that is not the case.”
Given the increasing amount of scientific evidence refuting a vaccine/mercury autism link, it seems that it would only be fair and responsible to not give weight to both sides of the “debate,” which seems less and less to be a debate: On the one hand, parent advocacy groups put out full-page ads with nonsensical, albeit catchy, statements (”green our vaccines”) and brag about the celebrities who helped to finance the ad. On the other hand, scientific research studies that dispute a link between vaccines or something in vaccines and autism are published in scientific, peer-reviewed journals.
I expect that the science about such a link will continue to co-exist with myths about vaccines and autism. Though theories such as the refrigerator mother theory of autism have long been discredited, parents today still seem to have a fervent emotional need to say that they did not, that they had no part, in causing a child to become autistic, even as more and more studies explore the genetics of autism. For all that we think our culture and society are based in science and reason, there is still a need for myth and for a way of explaining the phenomena of the world that, while irrational and not based on scientific evidence, seems that it should be true, based on what we humans see with our own eyes.
Belief that a vaccine or something in a vaccine causes autism will persist and proponents of these sorts of hypotheses will continue to try to strike fear into the hearts of expecting mothers, young parents, and the general public with deliberately graphic language about “injecting known neurotoxins into young children” and know-nothing rhetoric asking “what sort of person/parent would deliberately put mercury into a young child”? What the vaccine-autism myth reveals is the desperation of some to identify precisely what made their child “different” and to point the finger of blame at someone else, and, in some cases, to seek out experimental treatments (such as chelation) to expunge toxins and heavy metals from a child.
Reflecting on how much attention the vaccine/mercury-autism hypothesis has taken from real concerns about real autistic persons, adults and children—-about the shortage of trained teachers and therapists and appropriate school placements, the significant costs of treatments, the lack of housing for disabled adults and the question of employment—it is regrettable that so much time and energy (as in this very post) has been, is, and will be devoted to this particular issue. But myths, as any student of the ancient Greek and Roman world knows, are powerful stuff; who doesn’t read Sophocles’ Oedipus Rex or Sigmund Freud’s reconfiguring of it in the “Oedipus complex,” or Homer’s epic of the hero Odysseus on a quest to get back home to Ithaca, without feeling that frisson of some sort of familiarity?
This is not to say that myths are true, necessarily. But they sure can feel like they are.
See Orac at Respectful Insolence for more coverage.
Below is an email from Susan Martin of the AAP; you can email Ms. Martin by clicking here.Hello,
As part of our ongoing response to media stories regarding autism and vaccines, the AAP communications department is compiling a list of parents who support the AAP and are available for interviews. We are
looking for two types of parents who could serve as spokespersons:
Parents of children with autism spectrum disorders who support immunization and who do not believe there is any link between their child’s vaccines and his or her autism.
Parents of children who suffered a vaccine-preventable illness. This could be a parent who declined immunization, whose child became ill before a vaccine was available, or whose child was ineligible for
immunization.
We are asking for your help identifying parents who would be good spokespersons. They do not need to be expert public speakers. They just need to be open with their story and interested in speaking out
on the issue. We will contact candidates in advance to conduct pre-interviews, to offer guidance on talking to reporters and to obtain a signed waiver giving us permission to release their name.
If a parent were placed on our list, we would offer their name and contact information to select media. We hope to build a list of parents from a wide range of geographical areas.
As the Jenny McCarthy and “Eli Stone” stories illustrate, this issue is likely to recur in the national and local media. The AAP is committed to doing all we can to counter such erroneous reports with factual information supported by scientific evidence and AAP recommendations.
The anti-vaccine groups often have emotional family stories on their side. The ability to offer a reporter an interview with a similarly compelling parent who is sympathetic to the AAP’s goals is a powerful
tool for our media relations program.
Please contact me if you have any questions or to suggest a parent to interview.
Thank you,
Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics
I’m not convinced that vaccines are the cause. But I think unbiased studies either way on vaccines would be good. One of my kids had an adverse reaction to her vaccinations at age 6 months. The doctor’s tried to say it was coincidence but that was ridiculous to me. After being shuffled through doctor’s offices for the past 6 years for myself, I don’t just take what’s handed to me. Having a 3 year old with autism as well as a nephew, it’s interesting to me how autism is popping up everywhere. I worked in group homes 15 years ago where a couple of adults were autistic here and there, but nothing like it is today. At this point I don’t care what caused it; it would be great to have money directed towards therapy for autistic kids.
Thanks for sharing about your working in group homes—-I don’t know what my son might have been diagnosed with 15 years ago. Am with you about more funds for therapy for autistic kids and adults, too—my son will need a job coach before I know it.
“…Reflecting on how much attention the vaccine/mercury-autism hypothesis has taken from real concerns about real autistic persons, adults and children—-about the shortage of trained teachers and therapists and appropriate school placements, the significant costs of treatments, the lack of housing for disabled adults and the question of employment—it is regrettable that so much time and energy …has been, is, and will be devoted to this particular issue.”
It’s that “will be” that could be like the song that never ends, and should the debate among some never end, the clear need for the above is here right now and needs to be on the radar because the wheels of progress often move slowly.
H.R.2609
Title: To require the establishment of a task force to identify and disseminate evidence-based educational strategies and promising best practices to improve the quality of learning for individuals with autism in grades K-12.
http://thomas.loc.gov/cgi-bin/bdquery/z?d110:h.r.02609:
H.R.5028
Title: To amend the Employee Retirement Income Security Act of 1974 and the Internal Revenue Code of 1986 to require that group health plans provide coverage for pervasive developmental disorders such as autism.
http://thomas.loc.gov/cgi-bin/bdquery/z?d110:h.r.05028:
H. R. 4188
To amend the Individuals with Disabilities Education Act to permit a prevailing party in an action or proceeding brought to enforce the Act to be awarded expert witness fees and certain other expenses.
http://thomas.loc.gov/cgi-bin/query/z?c110:H.R.4188.IH:
These are not the only bills in Congress at this moment. It would be nice if they got as least as much attention as Eli Stone.
Thank you for sharing this. I posted this letter on my blog as well. I hope they are able to find some interesting and compelling stories.
Celebrity parents! That’s what the AAP needs.
I’m hoping that normal, everyday parents will do, but if the AAP had celebrity parents they’d undoubtedly get there much faster.
I wonder if Britney is up to date on her vaccinations? Oh, never mind.
Joe
Or, ahem, her sister…….
@Regan,
I don’t know when what you list won’t be me among my top concerns.
No offense Dr. Chew. I love reading your blog .. but not just for your informative writing, but also to read comments from contributors like Regan.
I learn a great deal here.
One more I read about recently is HR 4137 …
http://www.salemnews.com/punews/local_story_046065356.html
WASHINGTON — Congressman John Tierney and North Shore Community College President Wayne Burton spoke on behalf of adults with developmental disabilities yesterday at an autism summit on Capitol Hill.
Their work could also help give North Shore residents with developmental disabilities a shot at a college education.
Taft College, a community college in Taft, Calif., arranged the summit in an effort to “inform community colleges across the nation about the opportunities for adults with developmental disabilities provided for by HR 4137 (the Higher Education Re-Authorization Act of 2007)” said Taft College President William Duncan.
The legislation provides for a pilot grant program to support model demonstration programs that “promote the successful transition of students with intellectual disabilities into higher education.”
Tierney, a Salem Democrat, expressed his support for programs that help adults with developmental disabilities transition into their respective communities.
“Community colleges need to roll up their sleeves and help usher this through,” Tierney said. “We just need to step up and do it.”
The legislation is estimated to provide approximately $2 million per year per institution to cover the operational costs of a Transition to Independent Living (TIL) pilot program, to be modeled after programs like Taft College’s successful TIL program.
“A program like that is badly needed,” Burton said. “And I would definitely like to explore the possibility. Thanks to the leadership of Congressman Tierney and Sen. (Edward) Kennedy, we now see that it could actually happen.”
An early version of HR 4137 provided for the formation of six such programs across the country. However, Kennedy, a strong supporter of efforts to help those with developmental disabilities, helped change the language in the act to provide pilot programs for an additional 45 schools, including North Shore Community College.
The bill passed both houses last September, however appropriations have not yet begun for the measure. For North Shore Community College to receive the funding to start a program like TIL, HR 4137 would need to remain intact through the appropriations process.
“It could be difficult,” said Congressman Jim Walsh of New York, the ranking Republican on the House Appropriations Committee, who also spoke at the summit. “But the most important thing you can do is continue to get together like this to show all the support this effort has gained.”
Burton is scheduled to participate in a conference call next week with other community college presidents to continue to brainstorm on how to help jump-start the funding process.
I wouldn’t be a good spokesperson for this project. We delayed vaccinating my oldest son and he isn’t autistic. My youngest was vaccinated over my objections and he has Asperger’s Syndrome. Despite that, I am not a mercury mom. It was a horrific coincidence that my son showed no signs of autism before the vaccine. However, my brother and I probably have AS and weren’t diagnosed properly as children. The diagnosis back then was “we don’t know what’s wrong with theses weirdos.” My brother in law recently got diagnosed with AS. It looks like it runs on both sides of the family.
Thanks so much for sharing all that—-I’ve noted autism in both my family (both sides) and in my husband’s family.
Thanks for blogging this! So far, I count 12 blogs discussing the need to help out with the AAP media camaign.
I’ve been away from the computer all day but I like what I’ve come back to. Seeing all the blogs posting about what the AAP is doing and looking for is fantastic.
I emailed Susan Martin too—–and today I scheduled Charlie to get a physical and two more mandatory vaccines for NJ 6th graders.
The myths and facts are really confusing and as for a family with history of autism, risk of having an autistic child is always possible. As a concerned parent, anything that may trigger autism such as medicines laden with mercury brings anxiety and fear. But without it, children are exposed to diseases. It is a difficult decision to make if not properly informed. It is good that there are now categorical evidences that this only a myth.