Evaluate Science, Not Celebrity
Published May 06, 2009 @ 12:33AM PT
"Celebrity" comes from the Latin word celeber, meaning "to frequent, throng, crowd." Celebrities are called celebrities because they attract throngs of people---crowds---in droves---and not necessarily for any reason that they're famous or, in many a case, infamous. It's generally accepted that one doesn't have to have any special talents to be a celeb. Get the attention of the public, get written up by some gossip blog that's the digital equivalent of Liz Smith or Walter Winchell (in the days when writing a gossip column meant writing a column of print in a paper) and bingo, you're it (as in "it girl").
Those in the public cynosure do tend to be (and indeed have been since the days of the ancient Greeks and Romans) actors and actresses; entertainers. (The Romans didn't speak of spectacula---"spectacles," from the Latin word for "watch," spectare---for nothing.) And the power of association being what it is in our ad-financed world, it's pretty accepted that if you've got celebs, you're gonna have people wanting to ride on their fame (from the Latin fama, meaning "rumor") to get themselves noticed; to get their cause noticed.
What would UNESCO have been without Audrey Hepburn?
Aid to Africa without Bono?
The Jerry Lewis Telethon without Jerry Lewis?
Now wait a moment----what cause exactly where those entertainers associated with? We do remember the famous name and face, but what were they "advocating" for and what difference did they, are they, making?
The phenomenon continues today, when celebrities continue to step up to the plate and in the name of autism (for example) do PSAs and march in rallies and "advocate" on TV talk shows (some have even, 'tis heard tell, signed contracts for their own TV talk shows). Very good for the entertainment factor and to keep the buzz alive, so long as we remember, that it's celebrities spewing out their views (kind of like blogging......) about various topics, et c'est tout.
Topics from science will no doubt be brought up when autism is under discussion. The evaluation of research papers, studies, and reports isn't, let's face it, very sexy and more power to those who think they've a way to enliven the mundane operations of downloading PDF files and reading them (with frequent reference to dictionaries and such, in my case) slowly. Careful evaluation of science doesn't translate at all into sound bytes, it must be noted; indeed, much gets lost in the translation of science into articles and press releases and such for the general public.
And science is from scire, Latin for "to know," and knowledge comes when it will, and often slowly, after long-term study and careful application of principles, axioms, and information previously acquired and thoroughly absorbed and often in the quiet of a desk heaped in books and papers in the light of midnight oil.
And far, far from the madding crowd and the cult of celebrity.
Take action: Evaluate science, not celebrity.
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Comments (32)
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Kristina is a Classics professor in Jersey City, New Jersey, a blogger (formerly at AutismVox), a translator (of Virgil), and an advocate every day for her son, Charlie.
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Scientists take hits for not being able to relate their message to the lay audience, but I find that most people neither have the patience nor want to take the time to digest something that may be quite complicated or not so cut-and-dry.
On the other hand, a D-lister ranting for 15 seconds gets the message out in 15 seconds.
I like your scientist pic, but I don't know anyone in any lab I've worked in who looks like that. Gone are the days when some Chemistry or Biology PhD can sit in dark room free of both social pressures and showers, figure things out, and then go home satisfied without sharing that newfound information. We're pretty social creatures.
Posted by Ken Wickiser on 05/06/2009 @ 05:22AM PT
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The photo is from the original "nutty professor"--
http://www.imdb.com/title/tt0057372/
Posted by Kristina Chew on 05/06/2009 @ 07:02AM PT
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I agree that it is a shame that our media tends to focus on "sound bites" and celebrity. More in depth coverage and scientific analysis would be better.
It is wonderful that Jenny McCarthy's celebrity status has allowed her to break through some of the resistence to telling the stories of vaccine injury and biomedical treatments for autism. She's in the news because she is a celebrity, but she has a following not so much because of being a celebrity as because she is telling a story that resonates with so many parents, who have had similar experiences but whose stories were not being told in the press, and are still not being studied by the CDC or FDA.
Robert F. Kennedy jr. said in Spectrum magazine that after his 2006 article “Deadly Immunity” was published, he received thousands of letters and emails from all over the world. “The astounding thing was how alike all of them were and that people from Mississippi to New Delhi shared such identical experiences. Here is the typical scenario I heard: A mother took her toddler to the doctor where he received a spate of vaccines, became ill that night, often with a fever, sometimes with seizures, then lost the language he had, developed stereotyped behavior and regressed into a looking-glass world of debilitated relationships and social isolation."
Although this does not represent the story of some people with autism, it does represent the story of many others, and these stories are worthy of study and attention. Jenny McCarthy has brought these issues to the attention of many.
Scientific studies are certainly very important, but unfortunately some of the most important studies have not yet been done. There is a lot that parents can learn from each other's experiences and accumulated knowledge.
For example, my son had chronic diarrhea and enuresis and was thus unable to get toilet trained, until he went on a gluten-free casein-free ("GFCF") diet and digestive enzymes at the age of 11. I heard about these treatments from books written by mothers, not from any doctor or scientist. Thank goodness we found these or I would probably still be changing his diapers at the age of 16 and he would not be able to be in his current after-school recreational program which requires being toilet trained.
Jenny McCarthy is promoting resources that can be very helpful to families, including information on dietary intervention. The only way to know whether or not the GFCF diet will benefit your child is to try it. It's harmless, not so difficult, and does not require a prescription. You don't need to read scientific studies to try the GFCF diet and see whether it is helpful -- nor for digestive enzymes and multiple vitamins.
I say, thank you Jenny McCarthy, for helping to inform people of interventions they may not have heard of, as well as reminding parents of the importance of thinking through a baby's vaccine schedule -- educate before you vaccinate.
Posted by Twyla Ramos on 05/06/2009 @ 09:54AM PT
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Sometimes peace starts with just listening to the other guy
I think it is interesting to hear the stories of others, to hear their experiences and perspectives. Everyone has something to say base on their experiences- the "truth"they learned on their autism journey. I might not agree with your "truth" but then I am not you or have your same life journey. By listening I might better understand each person's point of view in the autism wars and why that view of autism is important to them. We could have meaningful and respectful dialogue with each other.
Some how we need to find common ground so we can work on getting the world to respect and accept autism. I actually see similarities between the different groups. It starts with respecting each other. Listening is a powerful peace tool. "Peace for all"
Posted by L I on 05/06/2009 @ 04:15PM PT
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to the other guy; the other mother........I think of the words "e pluribus unum," out of many, one.
Posted by Kristina Chew on 05/06/2009 @ 05:05PM PT
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No wonder Dr. Chew wrote this article today about celebrity. Today Jenny McCarthy, JB Handley, and Dr. Jerry Kartzinel appeared on the TV show The Doctors. For a spirited debate, see http://www.thedoctorstv.com/main/procedure_list/269
Posted by Twyla Ramos on 05/06/2009 @ 10:41PM PT
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@ Twyla. Thanks for the clip from thedoctorstv.com. I watched the clip and really agree with the doctor, who hosts the show. His point was that as a doctor he wants to help autistic children but gets attacked.
"Standards of medical practice provide a defining baseline of expectations for consumers and practitioners. They provide a measure against which individual interpreters can monitor the quality of their own performance. They establish criteria for certification and/or entry into the profession, ensuring quality and consistency of performance".
http://www.hablamosjuntos.org/resources/pdf/IMIA_Standards_Of_Practice.pdf
Insurance companies have dropped doctors who consistently deviate from standard medical care. I know several doctors that this has happened to. Primary care doctors (see one doctor at a visit) is going extinct. Most care is done in community settings with alternative staff (nurse practitioners, physician assistants, medical assistants) in order to save money. There is a doctor shortage in several specialities because medical students can't afford student loan repayments and low medicare/medicaid reimbursement insurance from patients.
My roommate in college owed $160,000 in student loans when she graduated from medical school plus the high cost of malpractice insurance $250,000/year. She ran 3 family practice clinics. Doctors need to see so many patients a day to support a practice. At one practice the doctor spent $400,000 for the building, staff etc. It is cheaper to have alternative staff than to hire another doctor full time.
"Shortage of Doctors an Obstacle to Obama Goals
By ROBERT PEAR Published: April 26, 2009 WASHINGTON - Obama administration officials, alarmed at doctor shortages, are looking for ways to increase the supply of physicians to meet the needs of an aging population and millions of uninsured people who would gain coverage under legislation championed by the president.
The officials said they were particularly concerned about shortages of primary care providers who are the main source of health care for most Americans.
http://www.nytimes.com/2009/04/27/health/policy/27care.html
Insurance companies attack doctors for things they prescribe. Many doctors are leaving family practice etc. because of the time and resources spent on getting insurance reimbursement for their clients. It takes too much time, too little reimbursement for medical and medicaid insurance. People with medical/medicaid insurance are at risk in finding care.
Doing respite care for challenge children is exhaustive and there is differences in care between the families and the professionals. If you and the family can hang in there, listen to each other with mutual respect both sides can agree and both sides can change a little. The child benefits and everyone learns from each other.
Ending autism wars (heated attacks) would help in getting services and supports our kids need. We don't want to drive away good help simply because they are tired of being at war with families. More importantly, it is important to create a positive experience for families instead of an environment that depletes energy levels.
The most important point is we need to take care of all parties involved in the child's care.
Good comment, Kristina. "Out of many, (we could get) one". "e pluribus unum". I think it is very appropriate to the discussion.
Posted by L I on 05/07/2009 @ 03:47AM PT
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There is a huge problem here, which is that vaccine injuries are occurring and not being acknowledged, treated, or studied. I can't see how continuing to bring up this problem causes an autism war, and it would be unfair to blame doctor shortages on those who are speaking out on behalf of vaccine injured children.
I am all in favor of reasonable discourse. Sometimes, understandably, emotions are strong, and certainly name-calling would not serve any good purpose.
But I don't think that most parents of vaccine injured children are at war with other parents; the battle is with the pharma companies, medical establishment, government agencies, AAP, and pharma companies who continue refusing to acknowledge and address the problem of vaccine injury.
If a parent says, "I saw my child suffer high fevers, scream for hours, and have seizures after a vaccine and then my child lost social skills and language within a matter of days," and the response is, "You don't understand science," or "Don't tell your story because we all need to be united," I don't see how that serves any good purpose either.
"E pluribus unum" should include listening to parents who are telling about an experience of autism which may not be the same as that of some of the other parents and people with autism who post on this site.
Furthermore, there is a growing amount of legitimate science supporting the role of immune system disregulation in autism.
Posted by Twyla Ramos on 05/07/2009 @ 09:04AM PT
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Twyla, the problem is explanatory: no one on the "vaccine injury" side has given a sound, scientific explanatory mechanism for how vaccines cause "injury" that leads to autism, and there is a very clear mechanism that explains why parents think they observe injury when none in fact exists (confusing correlation with causation: the age of symptomatic onset is roughly the same time frame that children are vaccinated). If one side has no real explanation other than "The vaccines did this! I don't know how, but they did!" (and ultimately, that's what it comes down to, since all of the remotely plausible mechanisms such as thimerosal have been falsified), and the other side has a clear explanation that isn't ad hoc, then it is far more reasonable to assume that the parents are simply mistaken and have latched on to something unrelated in order to have some kind of reason for their child's illness. (I say this not to psychoanalyze; I had these sorts of thoughts after my son was diagnosed last November, even though I never did place the blame on vaccines or anything, really. I do, however, recognize the desire to blame something.)
Posted by Galen Broaddus on 05/09/2009 @ 06:48PM PT
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Galen -
For two examples of plausible mechanisms, see the Bailey Banks ruling http://www.uscfc.uscourts.gov/sites/default/files/Abell.BANKS.02-0738V.pdf and the Hannah Poling concession.
Parents report on their observations: child receives vaccines and has a reaction often including high fever, screaming, seizures, and then loses language, social skills, and learning skills. These reactions are consistent with reports over many years of vaccine-induced encephalitis, and with studies showing various kinds of immune system derangement in people with autism. The increase in autism has paralleled the increase in the number of vaccines given to babies.
It is unrealistic to expect parents to explain the exact mechanism. We need more studies of affected children by doctors and scientists.
There is surely a lot of diversity in how babies are affected by vaccines and by environmental toxins, making it difficult for epidemiological studies to tease out multiple factors, as Dr. Bernardine Healy has said.
Posted by Twyla Ramos on 05/11/2009 @ 09:02AM PT
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@Twyla. "autism which may not be the same as that of some of the other parents and people with autism who post on this site".
I think that is an important point. Autism is complex and each child responds in an unique way. But I do think each story is a puzzle piece that helps us understand autism.
I am less interested in the cause of autism. My brother was the only one in our large family with a developmental disorder. I was more focused on helping my son to be part of the world. What was he meant to do with his life? So my focus has been on my son rather than following some politically correct way of raising him. Maybe it has to do with my brother not being allowed to attend school. Times and ideology change. It's my son's life not mine.
It would be interesting to read the different stories and find similarities and differences. I am sure there are great answers in those stories. As fascinating as reading the letters, stories of people coming west in covered wagons.
You could tell similarities and differences in those stories too. Parent anecdotal autism stories have something to offer too although some experts disagree.
Posted by L I on 05/07/2009 @ 10:30AM PT
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"Autism is complex and each child responds in an unique way. But I do think each story is a puzzle piece that helps us understand autism."
I agree!
"So my focus has been on my son rather than following some politically correct way of raising him."
We all muddle through and find the best way that we can. There are theories, and then there are our multifaceted, unclassifiable, rough-around-the-edges lives!
Posted by Twyla Ramos on 05/07/2009 @ 04:12PM PT
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Research without parent input-
What quality of information are we getting?
Is Research valid when it lacks parent input?
@Twyla. ""You don't understand science," or "Don't tell your story because we all need to be united," I don't see how that serves any good purpose either".
Thanks, Twyla.
I meant to tell you that I thought these statements are important. The focus in autism is on research which is evidence base that helps with treating and educating the public on best practices. But along the way experts have let us parents know that our anecdotal comments can't be trusted. So even though we have autistic children science doesn't want to hear from the parents. Results of a research sample of 150 is then applied to thousands of autistic kids. I think you need the parents in the loop too. Science can't be isolated from the kids it studies.
So what happens is parents have to talk about research with less emphasis on the kid. The whole situation is a mess especially for parents who don't understand research studies or science. Research should include parents comments. I had this problem when I attended a DAN(Defeat Autism Now) conference. I pointed out to Dr. Rimland, Dr. Baker and others that you don't include the parent input in your studies or your conference. They admitted this was true.
"Such evidence is not subject to any controls which typlify scientific inquiry. The interpretation of the evidence is typically very subjective and not subject to any measurement system to provide any accuracy of results. Anecdotal evidence can also be tainted by placebo effects. Despite all these drawbacks though anecdotal evidence is still evidence, albeit of the lowest order. While it should not, by itself, be taken as conclusive in determining the effectiveness of an intervention it should not simply be discarded either. Anecdotal evidence can suggest areas that should be investigated further by professionals conducting research in accordance with scientific procedure and standards.
http://autisminnb.blogspot.com/2007/09/anecdotal-evidence-indicating-hbot.html
Autism research has discarded anecdotal evidence. The consequences are parents discussing research and ignoring how their child behaves at home. Our children act naturally at home and not in an artificial setting like a research lab. So to get better results anecdotal evidence needs to be included.
Posted by L I on 05/07/2009 @ 07:54PM PT
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Thanks, LITM -- I like that quote, "While it should not, by itself, be taken as conclusive in determining the effectiveness of an intervention it should not simply be discarded either. Anecdotal evidence can suggest areas that should be investigated further by professionals conducting research in accordance with scientific procedure and standards."
That's a very good statement.
Posted by Twyla Ramos on 05/07/2009 @ 08:50PM PT
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I wish we had the opportunity to evaluate science and not celebrity, but the science needed isn't being conducted. All the shots haven't been studied, certainly all the shots as administered as proscribed by the vaccine schedule haven't been studied TOGETHER. The science to evaluate the efficacy of chelation isn't being done - 'they' were afraid of even what the ineffective oral chelation study might show. With the flimsy excuse that they were worried about ethical issues - and there are lots of parents who would love to do chelation but their budget does not allow it. Many parents have done IV chelation on their own and seen great results, why not at least compile data from the 'science' we parents are forced to do on our own because we are not being served by a health care BUSINESS that understands full well that sick people are more profitable than well ones?
Celebrity or not - I really loved Jim Carrey's recent statement - "There is no evidence of the Lincoln Memorial if you stand with your back to it and refuse to turn around"
At some point, all of the 'anecdotal evidence' from thousands and thousands of parents who see results from biomedical interventions has to amount to real data, folks. We are experiencing the biggest iatrogenic disaster in history, how much longer will that be deniable? By anyone, anywhere?
Posted by Amom whoblamesva... on 05/08/2009 @ 09:54PM PT
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So we'll have to keep focusing on science and leave celebrity to the tabloids.
Posted by Kristina Chew on 05/08/2009 @ 10:00PM PT
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I had read somewhere that if something could be solved with common sense then you don't need science. Something that seems to be common sense is easy to explain and lots of people easily embrace it. Science isn't as easy to explain.
Posted by Donna Stevenson on 05/09/2009 @ 05:12AM PT
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One thing that we need to differentiate here is the role of celebrity as 'spokesperson' and celebrity as 'expert'. Audrey Hepburn, Bono, and Jerry Lewis have always been spokespersons. There's a certain responsibility that these people have to their causes, though; they're careful not to *hurt* their cause with their actions. Jerry Lewis doesn't come on the MDA Telethon and say, "Here's how to prevent Muscular Dystrophy", does he? No.
Unfortunately, Jenny McCarthy is different. She has a child who *may* have been autistic (it's subject to debate among us Aspies; more later). She Googled for half an hour, and became an 'expert' on autism; of course, that means she knows *much* more than experts in the field, and her trashy behavior shows it!
I *will* readily agree that the medical establishment *should* be doing more research on vaccine injuries, etc. So far, though, the most reputable study - Columbia's - seems to *discount* any specific link between vaccines and autism. Going further, a continuing series in the London Times has shown that Andrew Wakefield - the British 'researcher' who first postulated the vaccine/autism link - is pretty much a fraud. Flawed methodologies, undisclosed facts, and *serious* ethical conflicts abound in his 'research', rendering it *worthless*.
So where do we go from here?
One of the problems in dealing with autism treatment is that we're pretty much still flying blind; we know more today than we did 5, 10, 20 years ago, but we don't know *all* the details, and that's what makes all the causative claims (vaccines, thimerosal, gluten/casein, etc.) so difficult to either prove or disprove conclusively. We *do* know that there are *significant* structural differences in autistic brains (hippocampus, amygdala, corpus callosum, fuseiform gyrus, etc.); those differences *are* provable *and* measurable.
But is it that way for the kids who have vaccine reactions?
My feeling is that with proper research, we'll find a distinction between autistic brains (structural differences) and what I call "pseudoautistic" brains, where the symptoms are caused by environmental factors. If that distinction holds true, it means that we'll be able to differentiate between the two, and give each category treatments that will be *specifically* tailored to the condition. For example, if the effects of vaccine reaction can be reversed, that treatment can be standardized for 'vaccine-related pseudoautism'. This is a *much* better approach than simply saying "Autism is caused by vaccines!", or "Autism is caused by thimerosal!", or whatever 'cause' is cited.
Of course, the diagnostic criteria *will*, by necessity, take parental input into account... :-)
And hopefully, it's a win-win for *everybody* involved!
Posted by Bob 'Skippy' Blechinger on 05/09/2009 @ 05:35AM PT
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Jenny McCarthy is a spokesperson. She does not pretend to be an expert. She makes many appearances with Dr. Jerry Kartzinel, who is a pediatrician and expert on treating autism biomedicaly. She wrote her latest book with Dr. Kartzinel. Her prior books on autism told her and her son's story, and told the stories of a group of other parents and kids.
But Jenny has done a lot more than Google for a half hour. She has done a lot of research, and has spoken with thousands of parents and people around the world. She has accumulated quite a lot of knowledge about biomedical treatments for autism.
She works very hard on behalf of people with autism and their families, and she does not deserve the scorn often heaped on her by those who do not believe in vaccine causation and biomedical treatments.
Oh, and BTW her son was diagnosed with autism by more than one prominent expert, and a few years later after biomedical treatments that diagnosis was removed.
I agree with you that autism is very diverse and may actually be a group of syndromes. Autism is defined by behaviors, not by etiology or biological markers. Autism may have very different causes among different individuals.
Even among those whose autism is caused by vaccine, there may be a variety of underlying susceptibility such as mitochondrial disorder, hyperactive immune system, underactive immune system, inability to detoxify metals... And babies may react to a variety of components in vaccines, such as multiple viruses (e.g. MMR plus varicela) or aluminum or various types of proteins. Direct injection is different from our usual exposures via the lungs, skin, or digestive system.
This biological variation is one reason why it is difficult for large epidemiological studies to tease out causes and effects. Individual children need to be studied.
If you wanted to do a study on whether skiing causes broken legs, and you did a statstical analysis which lumped together downhill skiers and cross country skiers in one group, and people who did a variety of other physical sports in another group (including sky diving, mountain climbing...) you might find that the statistics do not answer your question. It would make sense to study individuals who broke their legs skiing in order to determine what factors seemed to contribute to broken legs.
I appreciate, Bob "Skippy" Blechinger, that you "readily agree that the medical establishment *should* be doing more research on vaccine injuries, etc." and that "One of the problems in dealing with autism treatment is that we're pretty much still flying blind".
We may very well find that some forms of autism are only gene/brain related and have nothing to do with digestion, immune system disregulation, environmental exposures, etc. But it's interesting to me that some of the people I know with Aspbergers say they feel better with some of the same interventions used by DAN! such as high dose vitamin B supplements and GFCF diet. There may not be a totally clear line between subsets. Yet I agree that identification of subtypes of autism is very important.
Posted by Twyla Ramos on 05/09/2009 @ 08:59AM PT
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I just need to clarify, Skippy, that the Wakefield saga is far from the cut and dried summary that you have been led to categorize it as. He has replied in detail (carried on childhealthsafety.wordpress.com) to the charges of the pseudo-journalist involved (who instigated the GMC hearings where Wakefield et al have had to defend themselves, and clarify the facts in the matter), and I assure you that the smearing & demonizing of Wakefield is premature. I encourage you & others to keep an open mind on the matter, and wait for the whole story to come out before sitting in judgement.
Other than that, I thought your contribution here was spot on. Indeed, there are different 'autisms'. And the sooner we can identify the various causal factors - both genetic and environmental - the better, for - as you say - a tailored approach to treatment. And, hopefully, prevention.
Posted by Stan Stanfield on 05/09/2009 @ 01:18PM PT
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Thanks, Stan. Regarding Dr. Wakefield, he is a man of integrity and competence, who is being persecuted for investigating his patients' health issues.
For another side of this story, see http://www.wesupportandywakefield.com/
At a Press Conference http://www.rescuepost.com/files/updated-uk-news-conference-media-advisory.pdf called to announce the imminent filing of Jim Moody’s complaint to the GMC, a letter http://www.rescuepost.com/files/uk-parents-letter-2.doc jointly written and signed by parents of eight of the 12 Lancet children, was read out by Mrs Rosemary Kessick http://www.rescuepost.com/files/uk-statement-rosemary-kessick.doc , representing the parents who had signed. The letter emphasized the regard in which the parents’ hold Dr Wakefield, Professor Walker-Smith and Professor Murch. The letter states that the parents were appalled that the GMC hearing had been allowed to go ahead ‘…in the absence of any complaint from any parent about any of the children who were reported in the Lancet paper.'
Anyone who believes that the MMR never causes autism may want to read the Bailey Banks decision at http://www.rescuepost.com/files/banks_word_document1.docIn addition, three parents, who represented four of the 12 ‘Lancet’ children, two of them brothers, made public statements http://www.rescuepost.com/files/uk-statement-isabella-thomas.doc and http://www.rescuepost.com/files/uk-statement-rochelle-poulter.doc to clarify the details of their childrens’ involvement and to express their support of the three doctors, whom they consider to be wrongly under investigation by the GMC.
Posted by Twyla Ramos on 05/09/2009 @ 05:23PM PT
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An additional statement, read out by his mother, was provided by Michael Thomas, one of the children involved in the original case-series. Michael, now 17 years old, wanted to speak out on behalf of the many children who are not able to tell their own story. This statement is reprinted below.
Statement of Michael Thomas (age 17) in relation to the GMC case filed against Andrew Wakefield, John Walker-Smith and Simon Murch:
As a young person with Aspergers Syndrome, OCD and Bowel Disease I feel that it’s outrageous that the journalists and the wider media always seem to ignore children like myself – children who are in constant pain and suffering and experience uncertainty about, not only themselves, but also their constant, and often life threatening conditions. And yet, there is hope, there is help there is a way out – but certain journalists and the GMC are attacking the only ones who seem to be able to help, the only ones who seem to care – the Doctors. They seem intent on bringing “justice” to those that have done “wrong”, and yet they ignore the very people that need the help the most. Whatever reason is believed to be the cause of our problems, proper investigations and subsequent medical treatment should be provided. These good Doctors that are unfairly on trial were trying to research into the cause of the problem, and proper treatment; though, now it seems like this research has come to a stop.
Hundreds of new cases appear ‘out of nowhere’ every year, and the problem – the suffering – is only increasing; much like the profits of certain vaccine manufactures. And at the cost of what? The cost of lives, quality thereof; lest mention the children who don’t survive...
In my opinion, I just find it unbelievable that we live in a century where others would not only put their own interest first (money being a key - if not the only - factor) but where they would be willing to take it so far, as to cost not only thousands of lives, but also thousands more suffering without any help.
As a child who is in constant pain, I believe I can speak for those who don’t have a voice, those who cannot communicate their pain except through constant cries of pain and suffering.
A final thought I have is that I hope, somewhere, someone will have some kind of moral judgement on this case and, hopefully they will be in a position of sufficient power, to help end this unnecessary suffering and pain.
Posted by Twyla Ramos on 05/09/2009 @ 05:26PM PT
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@Twyla: When someone like Jenny McCarthy indulges in on-air 'debates' - which generally turn into her *screaming* at the experts - it says 2 things: 1) She *does* consider herself an 'authority' on the subject, and; 2) It *hurts* the cause more than it helps!
There's a way to make a cogent point *without* turning into a screaming bee-yotch...
I don't see autism as being *defined* by behaviors. *Identified*, yes, but the behaviors don't *cause* autism; they're symptomatic. I'll agree that there *may* be a variety of underlying causes for autism and autism-like conditions; the difference I'm looking at, though, is how these conditions will be *treated*. If a pseudoautistic child can be easily treated by removing the environmental factors, that means that the parents won't be stuck for tens of thousands of dollars a year for 'therapy' like ABA. The ABA people will take a hit in the pocketbooks, of course, but that's *their* problem.
Being an old ski racer myself, I can tell you that skiing *doesn't* cause broken legs; they just kinda happen *while* you're skiing (Ironically, the *only* time I've ever broken a bone was slipping on ice while I was walking to a grocery store; go figure). There's no *causation* between skiing and broken legs, though; I'm not even sure if it's safe to say there's a valid correlation, either.
@Stan: I *can* keep an open mind about Wakefield, yes.
The big problem here is that the *ramifications* of Wakefield's claim are *extremely* serious! If people *don't* vaccinate their children, the kids are *highly* susceptible to measles, mumps, rubella, and a host of other diseases. Within the past year or two, there's been a *significant* increase in the number of measles cases reported. Why? People aren't vaccinating their children, because they *might* get autism; people have been fed the Autism Speaks dreck that "Autism is worse than cancer" and "Autism is worse than AIDS", so they're willing to subject their children to *serious* diseases, rather than take a *chance* that they *might* 'get autism'!
A *responsible* researcher would weigh the risks of making that kind of claim *before* making it. The hysteria that Wakefield has caused leads me to wonder just how much he thought it through...
"Primum non nocere".
Posted by Bob 'Skippy' Blechinger on 05/10/2009 @ 11:13AM PT
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I don't have time to respond to everything you said, Bob/Skippy, but I will just say that when I said "defined" I am talking about the official DSM-IV definition. You may feel that your autism is "real" and other sorts of autism are "pseudoautism" but both fall under the umbrella of the word "autism".
Posted by Twyla Ramos on 05/10/2009 @ 12:53PM PT
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Skippy, largely I agree with what you have written with the exception of the characterization of Wakefield as being anything less than a man of science and integrity. As far as MMR hysteria and vaccination drop off rates go - there is absolutely no reason to not give monovalent vaccines ( breaking the MMR into three distinct vaccines ) EXCEPT big pharma does not make them available. So, if parents are afraid of MMR and still willing to vaccinate for those diseases individually, that they don't do it because the vaccines aren't available is hardly Wakefield's fault.
It would be interesting to understand brain differences between autistic and non autistic or even autistic-like people. However, unless and until we have solid scientific data on the characteristics of the human brain from birth forward, it won't tell us whether there is a vaccine causation or not. The brain is still developing in a new born. (How was I EVER stupid enough to believe that arogant doctors knew enough about anything to recommend a vaccine when my child was hours old for a disease there was virtual no risk my child could be at risk for? Yes, I'm talking Hep B.) Follow the money - find out who is funding studies and what their vested interest are in the outcomes before you 'believe' them...
Maybe other parents feel as I do - fool me once, shame on you. Fool me twice, shame on me. With this recent swine flu hysteria to prime everyone to jump at the chance to get the next latest, greatest, untested vaccines - I have lost what little faith I had remaining. Vaccines are implicated for causing inflammatory diseases such as diabetes, asthma, etc. Many, many people die from those diseases each year. Many more die from the cumulative effects of a processed diet. ONE person dies from swine flu, and we are on high alert and in hysteria. Doesn't anyone else see something wrong with this picture?
Posted by Amom whoblamesva... on 05/10/2009 @ 01:04PM PT
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I would just add that Dr. Wakefield did not cause the fear of the MMR. He responded to concerns voiced by his patients' parents. Many parents have been speaking out about their children's reactions to the MMR. Recently thousands of parents marched in London. See http://www.openyoureyestoautism.com/index.php?option=com_content&view=article&id=56&Itemid=67 and
http://www.openyoureyestoautism.com/index.php?option=com_content&view=section&layout=blog&id=5&Itemid=64
I can't understand the viewpoint that the only correct reaction to this problem is complete censorship.
Following the philosophy of "First do no harm" should mean that problems be investigated to ensure the utmost safety, rather than problems and knowledge being suppressed.
Posted by Twyla Ramos on 05/10/2009 @ 11:53PM PT
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@Amom: I'll be fair and say that I'm not 100% against Wakefield myself, but from what I've seen, there *are* legitimate questions that can be raised as to his integrity. You mentioned monovalent vaccines as opposed to the MMR; interestingly enough, Wakefield has a *patent* for a measles-only vaccine. If that's the case, then what's his motivation? If he fomented the anti-vaccine hysteria so he could say, "The MMR vaccine can cause autism, but *mine* won't!", then there's a SERIOUS conflict of interest, not to mention ethics, too! If he stands to *profit* from attacking the MMR vaccine, then he should *completely* remove himself from the situation. Period.
I agree with you 100% about Big Pharma; I wouldn't trust them as far as I could throw them!
Understanding the differences between autistic, pseudoautistic, and neurotypical brains is really the bottom line for what I want to accomplish with the pseudoautism hypothesis. Hopefully, research can be conducted concurrently with existing research projects, such as the Autism Phenome Project at UC-Davis's M.I.N.D. Institute.
I *definitely* see what's wrong with the vaccine picture, and I agree that we need a *lot* more valid research into vaccine side effects, but at the same time, we *also* need to quell the hysteria, because *that's* hurting the chances of getting realistic information, too!
Posted by Bob 'Skippy' Blechinger on 05/11/2009 @ 04:38PM PT
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Speaking as an adult with Asperger's syndrome, and a member of the Autistic Rights Movement, I would hope that, where they are capable of expressing it (by what ever means), the input of autistic people is taken into account, as well.
Posted by Phil Culmer on 05/09/2009 @ 09:18AM PT
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@Phil. "the input of autistic people is taken into account, as well".
Definitely this is important and necessary- input of autistic people.
I think what is hurting the autism movement is there is disagreement which leads to trust issues. We are all united because we know someone with autism. I am sure there are important similarities as well as differences. Let's focus on the similarities. Everyone has much to offer. We need to come together and talk to each other. At least try to have 3 groups of ideas:
Agree, Unknown, Disagree.
Come Together Lyrics Artist(Band):The Beatles
"He says"I know you, you know me (autism)"
One thing I can tell you is you got to be free(speak your mind)
Come together right now over me(autism)"
Posted by L I on 05/11/2009 @ 11:09PM PT
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Twyla,
if I've read Skippy's comment correctly, he's not saying pseudoautism in the sense of it not being real, but distinguishing a reactive autism (eg one triggered by gluten or casein) from one that is due to a difference in brain structure.
I would also like to support what he has to say regarding vaccine injury. Whilst this should not be discounted as a possible trigger for autism, we need to get away from the sort of hysteria being pushed by the likes of Autism Speaks, who are saying that it is preferable for a child to die of an easily preventable disease than to take a chance on them being autistic. This sort of thing is extremely offensive to many autists - some members of Autistic Rights groups were at a reception at 11 Downing Street recently (invited as individuals, not as representatives of their groups, but that's another matter), and had to listen to some stomach turning stuff being trotted out - even the charity people found it embarassing to listen to.
Posted by Phil Culmer on 05/11/2009 @ 04:56AM PT
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Exactly, Phil! :-).From all indications - including the new findings that the 5p14.1 gene has a genetic marker for autism - there's a strong genetic component to autistic spectrum disorders. Like you clarified, that's not to say that there *can't* be environmentally-induced autism, only that those so affected may not have the changes in brain structure that are known to be associated with ASDs..Thanks for the Autistic Rights Movement comments, too! :-)
Posted by Bob 'Skippy' Blechinger on 05/11/2009 @ 04:10PM PT
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@Phil
It would be interesting to know what is offensive to the different groups. To understand why things are offensive would also be helpful.
Posted by L I on 05/11/2009 @ 11:17PM PT
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