In June of 2003, I opened my blog with these words:
Megan was born on 17-02-00 weighing slightly more than usual. The first few months of her life were totally normal- we didn't feel concerned about her health or well-being at all. That changed however when she had her DTP jab.
I know there's been a lot about the jabs (particularly the combined MMR jab) in the news but we (or rather I, Naomi was a lot more dubious than me but I managed to convince her) decided to go ahead with it and on the night of her first lot of jabs Megan began projectile vomiting and developed a temperature that peaked at 102 degrees. We phoned for an Ambulance and took her to A and E where they brought her temperature down, then told us they couldn't find much wrong with her. We were relieved but by the end of that week we knew something was wrong with Megs. She seemed subtely different.
There was nothing you could put your finger on as such but the difference was there, she was late walking and was uncomfortable around others.
2003 was the height of the vaccine/autism scare in the UK and the US. Rumours (heavily fuelled by a UK media looking for the next 'shock' story and a US media looking to uncover the next 'watergate') about the various vaccines our children took were spreading like wildfire and I was as credulous as the next parents.
Our daughter had had an undeniable reaction to her DTP jab and we...we had a consequent overreaction and made an association where there was none.
Why did we do that? For a number of reasons really. First, we're not scientists or doctors. Second, we were still in the 'grieving' stage in that we had only very recently received the official diagnosis of autism and were reeling as a result - ready to clutch any straw. Third - we were totally ignorant of the personalities and politics behind the autism movement. We assumed everyone with the title 'doctor' would be rigorous, objective and honest.
At the time, our overreaction led us to some extreme thinking. We even made a claim for damages to the Vaccine Damage Payment Unit. One irony of this event was that by the time the claim was processed and inevitably rejected we had long since abandoned the idea that vaccines had any bearing on causing our daughters autism.
Over the following five years I've read about, commented on and blogged about so many aspects of the various autism/hypotheses that I think I could probably write my own book on the subject (if I had the gumption and inclination) but one thing remains clear to me above all else. There is nothing that is accessible to ordinary parents to spell out the science in clear English. Some may claim that's dumbing down science. Tough luck. Dumb it down then. Parents need to understand it. I was lucky that I became acquaintances with parents of autistic kids who were also scientists and who were able to explain the science to me so I could blog about it effectively.
Something else that would've been invaluable would've been a book like Paul Offit's Autism's False Prophets.
Its a very strange feeling to read a book that you have literally lived. I know many of the events intimately. I know the names, beliefs and attitudes of many of the books 'characters' very well. I have debated/argued and been threatened by many of them. My daughter's name and disability has been reviled by some members of the groups they have set up.
In later posts I hope to discuss particular issues in more depth but in this initial post I wanted to say who I am and explain my point of view. I also wanted to make a very general point about scientists.
Paul Offit (and several of the ScienceBlog bloggers) have set a standard. It is not acceptable for scientists to not participate in debates of this magnitude. You must get involved. You must speak clearly, using language the majority of people understand. You can do this via consultations with parents, via blogs, via interviews with media and when you serve on local or national government bodies.
You need not engage directly with the quacks who peddle autism quackery. Do not debate them directly. But demand equal air time. Write to local papers. Hold vaccine-education clinics. Hold autism-education clinics and invite autistic people to speak. Do not feel you have to listen to anti-vaccine rhetoric just because its coming from the mouth of a poor, poor autism parent.
And let me tell you another thing too. There are far worse things in the world than autism. Measles for example can kill people (and has done, twice in two years in my country). Mumps can make boys infertile. Polio can kill, maim and cripple children. Whooping cough can kill children. Personally I'd rather my child was autistic than y'know, dead.
- Log in to post comments
An extremely important point (and an important aspect of Dr. Offit's book). I think it's worth noting that many (if not most) real scientists are accessible. In my own blogging at Autism Street, I've had numerous occasions to ask about a particular paper, ask for scientific review, or just simply ask a question. With the exception of one (that has gone unresponded to so far), the scientists I've contacted have all replied and been extremely helpful with careful explanation or expertise and opinion. Dr. Offit's book does this proactively.
One question Kev: If you could have written a chapter that's not in AFP, what would it have been?
I can't speak for Kev, but I would have included a chapter on mitochondrial disorders and the Hannah Poling case. On the other hand, that story may have broken too close to publication time to have been included.
Thank goodness for parents like yourself, who have taken steps to wade through the misinformation that constantly bombards the public. I certainly sympathize with the difficulty in digesting much of the scientific jargon that comes with real in-depth explanations. Especially cases such as Hannah Poling's, whose "mitochondrial disorder" looks likely to become the next buzzword in attempts to tear down vaccinations. I think Dr. Offit wrote an excellent book, but I do wish there had been a little more discussion of mitochondrial physiology, although I understand it's not Dr. Offit's area of expertise, because anyone familiar with it knows that heterogeneity is one of the main problems in diagnosis and treatment of such disorders. It is a complicated clinical and research subject and I think it would do a lot of good to get the subject clearly explained before anti-vaxers jump on the bandwagon. I only have a bachelors in molecular biology and biochemistry, so I don't know if I'm the most qualified to expound on topics like this, but I hope well-trained scientists and clinicians will put in their two cents before a new scapegoat rears its head.
As usual, Orac is three steps ahead!
Its a very strange feeling to read a book that you have literally lived. I know many of the events intimately. I know the names, beliefs and attitudes of many of the books 'characters' very well. I have debated/argued and been threatened by many of them. My daughter's name and disability has been reviled by some members of the groups they have set up.
That was seriously surreal for me too, only as a non parent probably less so.
How do you think this'll affect Troo Beleeviers, or more importantly, those parents who are actually questioning the issue?
I also can't speak for Kev, but there are a few things I would've liked to read about: (1) Dan Olmsted and his Amish reporting; (2) JB Handley's predictions and his legal bullying (there's only one mention in passing about this); (3) John Best's statements and activities; (4) The Geiers' plagiarism of Verstraeten et al. (2000).
I know. Too much information to share. Too little space in the book.
Some might say John Best is too fringe to be given the time of day. But I think he's a good example of how extreme persons with that worldview can become. A discussion of the Illuminati and David Ayoub would've been in order as well.
I have been an anti-vaxxer for several years. I won't lie, I still find myself in that camp, but thanks to blogs like Orac's pointing me to research that I hadn't looked at previously, you will be happy to know that I am perhaps starting to come around.
Here's one thing that I think needs to be addressed by the pro-vax scientists, something that even as I explain my changing point of view to fellow anti-vaxxers, they always come back with...
Quite simply, they (we) don't trust the studies because there is a suspicion that they are being funded by the drug makers who have a very strong financial incentive to make sure vaccines remain on the market. What sorts of things can you say to help us get by this idea that it is ultimately money driving these studies and not actual data?
I think I would've done a 'rolling' look at some of the lesser known personalities - in the way Joseph suggests.
We all know that in the media there's this unwritten rule that parents of autistic people are a mix of Mother Theresa and Job - ever suffering, ever with saintly patience. Well, frankly, that's crap.
Most of the anti-vax/autism brigade are very well off. The idea of Team McCarrey or Katie Wright ever having to fight for anything is laughable.
The media needs to get past the idea that just because someone is parent to an autistic child they're an authority or a saint to be pitied. They need to be held accountable - after all, we know lots of them push dangerous treatments and refuse to admit their error even when it becomes blindingly apparent.
@Orac, I emailed Dr. Offit suggesting if he ever did a follow up book that that case should be very high on his list of subjects to tackle. Or maybe someone of equal stature should step up now Dr. Offit has done his bit. A book from Eric Fombonne or John Shoffner would be a good read.
@MitoScientist: he always is ;)
Kev wrote: "It is not acceptable for scientists to not participate in debates of this magnitude. You must get involved. "
That is a very important point, and Kev wants scientists to get involved with helping the public understand science. I think there is another role that scientists should also take. During the Autism Omnibus trials, eminent scientists testified about the errors in many of the published scientific papers which are held up as "supporting" the autism-is-caused-by-vaccines view. I would like to see those scientists submit commentaries to the journals where these papers were originally published, pointing out these errors. In that way, this testimony would be captured in the scientific literature, where it belongs, and could be cited by anyone.
I think it's inescapable that the studies are done by companies wanting to make money off of the vaccines. After all, if Merck (for instance) wants to get a new drug (eg. a vaccine) approved, they should darned well have to pay for the necessary studies. The alternative is for the taxpayer to fund the studies, which would turn the pharmaceutical industry into something rather like the defense industry. Maybe that's not such a bad thing, but given how much money the defense industry consumes each year, I'm not sure it's realistic to start using the same strategy with other industries. It also introduces problems of its own, such as less motivation for real innovation.
This does present an obvious conflict of interest -- the studies to approve a new drug are funded, at least partially, by parties who will profit off of the new drug and who have spent a great deal of money on it already. And there have been scandals where inconvenient results discovered by the pharmaceutical corporations has been concealed. (Vioxx is a recent example.)
The answer to this problem is regulation and oversight. I think the best thing that our leaders in Congress and the White House could do to improve confidence in the safety of our drugs is to better fund the CDC and the FDA, and return the teeth that it pulled out of the FDA during the Clinton administration. (Note: I don't blame Clinton exclusively for DSHEA. It had strong bipartisan support, so both parties share the blame.)
Kev,
you've done a lot to bring the information in Prophets to the public. Much more, you've done a lot to give a sense of community to those who take the science-based approach. I'm very glad to see you on this panel.
Unfortunately, in discussing the bad-science side of autism, Dr. Offit was given an embarrassment of riches. There was so much he could include. In the end, the book is fairly concise, and I think it works well that way. It tells the story and makes the points. At some point, would he lose interest from the readers with even more details?
I'm glad the book is out. It won't get the readership of a self-help book with a celebrity name, but I think it is getting read by important people.
Troo Bleevers - you know the answer to that one Kassi ;) can you imagine this book having any impact at all on any GR member?
The new generation of parents I think are the ones this book is aimed at. I think it will have some effect. Fingers crossed!
Jennifer you're absolutely right. That would be so much of a relief. The facts that Bustin uncovered or Brent discussed are the thoughts of experts we simply don't have ready access to - and we need them.
@Brian - firstly, kudos to you for questioning.
I think the answer to that question is that even if these studies are funded by drug makers, that doesn't mean the scientists designing and performing these studies will report anything except what they find.
Secondly is the point of replication. If a study is well designed it is replicable. So any scientist, anywhere should be able to take the methods used by the first team and try and replicate their findings. This practically assures independence.
Thanks for adding to this discussion, Kev.
I agree that scientists need to step forward, and I think it's scandalous that more vaccine experts haven't come forward to take a stand for vaccines. Dr. Peter Hotez (mentioned in AFP) is an infectious disease expert, his work deserves it's own non-autism book, in my opinion. Dr. Hotez stepped forward, but unfortunately he said some really awful stuff about autistic children... I suppose in an effort to show that he understood what the mercury parents were saying when they whined about how awful their lives were. So... I criticize Dr. Hotez for the way he packaged his reference to autism, and his daughter, but I am glad he stood up to the mercury militants when no one else from among the science community was (besides the CDC officials and Dr. Offit).
The thing is, if the FDA and the CDC were on the ball they'd have a squadron of people to talk about vaccines (and some of them could easily be parents of special needs kids, even autistic kids). The FDA has strongly worded statements about fake cancer cures.
http://www.fda.gov/consumer/updates/cancerfraud061708.html
The Federal Trade Commission has this fantastic video, but it's very recent.
If they had had this kind of stuff when SAFE MINDS, NAA and GR started preaching their home-brewed insanity, it would have helped. If they had this kind of thing in place there would be "go to" people who were savvy about autism quackery and epidemic-lies. It's not that hard to knock the quackery down, it just takes time and skepticism of the veracity of the statements made by weeping mothers and growling fathers.
Kev made the point above... the parents are not always accurate. In fact some parents are outright lying about what happened to their kid because there's money on the line. Have we all forgotten about the people who cry "whiplash! whiplash!" when they get in a fender-bender (or wehn they cause a fender-bender deliberately)? Have we forgotten about the people who spill something in the discount store and deliberately slip on it??? What in the world makes us think that there aren't dozens of these full-time frauds among those posting to internet groups? And besides them, what about the neurotics and Munchausen's by proxy parents? Do they totally never get involved in faking or claiming that their child was vaccine damaged? That's a totally naive assumption. But any idiot who calls up a local TV station with a sob story about how their baby regressed within seconds of a vaccine is granted immunity to serious questioning.
And then there are certifiably delusional people who will believe anything that they are told... "your baby is autistic? then it was the shots!" at which point they begin to "remember" how it "really" was that their baby regressed before their eyes... that there were black helicopters circling overhead when they reported the "injury" to VAERS. These people are part and parcel of the mercury parent groups.
So, in my opinion a viable answer to the huge problem of the media spreading quackery is to fund the FDA again. They've been gutted and hardly ever go after quacks. The quacks can sell garbage for big money and totally get away with it.
And the medical boards are very reluctant to challenge doctors who harm autistic children. That needs to stop, too.
(Full disclosure: I'm one of 4 parents the book mentions specifically as fighting back against the anti-vaccine nonsense.)
http://www.ftc.gov/curious
The FTC video I mentioned that fights cancer quackery. It's great. They need to make one now for autism quackery.
It should be noted that the studies in question are rarely actually funded by pharma. What happens is that the researchers sometimes have tangential connections to pharma, and that's the usual complaint. Consider the IOM report, though. In order to be part of the IOM panel, the scientists can't have conflicts of interest, I understand. There's also Thompson et al. (2007), with a huge list of authors, where SafeMinds was invited to participate as consultants in the design phase. They withdrew after the results came in. Then there's the recent Hornig et al. study. Unless Mady was bought by pharma recently, that's a counter-example.
Conflicts of interest matter, but undisclosed conflicts of interest discovered later (like Wakefield's) matter a lot more I think. Replicability matters much more so.
Speaking of conflicts of interest. Boyd Haley lists taking money from pharmaceuticals for speaking engagements in his CV, but that doesn't bother anyone. Mark Blaxill's nickname is "Merck Glaxo" because he's made money by helping big pharma manage their money or promote their drugs or something. JB Handley sits (the last time I checked) on the board of "International Fiber Corporation" that sells it's fiber filler stuff to drug companies (and to cheese companies.... cheese is bad, you know). Sallie Bernard got some of her wealth from selling information to pharmaceutical companies (they companies are listed on her corporation's website as her customers). Andrew Wakefield had a patent for his own measles vaccine, making him the "enemy" one would think... and who would manufacture that stuff if it had turned out to be anything? A cheese factory or a pharmaceutical company?
I have no connection whatsoever to big pharma. I make no money in any way from anything related to pharmaceuticals, but that doesn't stop the wackos from saying that I'm a pharma shill.
Ms. Clark, thanks for joining the discussion here. I agree that the video from the FTC is very good. They hit most of the major points: be skeptical, don't fall for big words, testimonials might not even be real, the word "natural," and best of all, talk to your doctor! I hope they do more of these. This one could easily have been adapted to cover an even larger array to diseases.
I got sidetracked trying to keep up on other threads, too, and forgot to respond to the OP. D'oh.
Kev, thanks for volunteering to panel this book discussion. I think it should be very insightful to get a point of view from someone who's seen this from both perspectives.
Hi mandydax,
I think the discussion will turn out to be very enlightening. :-)
Even the antivax trolls are showing up to exemplify what Dr. Offit was writing about in his book. These are the kinds of people who write unfounded vile and insulting things about him because they can't cope with the truth or because they want to influence the pool of potential jurors in antivax court cases. It's like the whole breast implant thing (as described in Autism False Prophets).
One thing I thought was interesting was that there is a "scientist" at UC Davis who helped to create evidence against breast implants and who had signed up to testify against vaccines, too. The guy is massively prolific and his interest span several things, mainly allergies and a rare liver disorder... or something. To me, it looks like, for a hobby, he works with lawyers to cook up evidence for them, and then collects dough for testifying as an expert witness. This guy didn't make it into Dr. Offit's book.
"The new generation of parents I think are the ones this book is aimed at. I think it will have some effect. Fingers crossed!"
Kev, I am one of those new parents who has been absolutely horrified at the barrage of misinformation I have encountered online. Oh, what a tangled web of deception there is to be found. It is an absolute shame that when a mom new to a potential autism spectrum diagnosis for her son goes online to innocently research ASD, the majority of information that one finds on a Google search is vaccine-injury. I was at first, horrified, then angry and finally despondent. I then found Do'C over at autism street who is not just a friend to people like me but a voice of reason. Suddenly something made sense. My child is not toxic waste nor is he full of toxic waste. Thank God! I did not hold my precious son down while doctors injected him with poisons. What a horrible notion. My child is not damaged goods. He is my son. Ben is God's perfect creation, and he is special in his own right. Dr. Offit's book is right on. I love how he writes to the average non-scientifically minded person (I was an English Lit. major). Dr. Offit writes with vulnerability, authenticity and authority. I am thankful for this wealth of information to combat the wealth of misinformation that is out there lurking, waiting for that unsuspecting new parent to surf right into its deadly grip.
Ben's Mom, that's an absolutely beautiful comment. Ben is lucky to have you for a mom.
Great comment Ben's Mum :)
Do'C is a freind to me too. Many times I have had him patiently explain concepts to me until I got them. He's good people.
Interesting, Kev-- my son has Asperger's syndrome and was very big at birth as well. I wonder if there's any correlation between macrosomia and autism? (I know it's most often seen in cases of gestational diabetes, but I was not gestationally diabetic, yet the boy was 10 lbs 12 oz at birth!)
Oh wait-- you said Megan weighed "slightly more than usual." Never mind! Me lack reading comprehension this night. :)
Heh ;)
There is a correlation between head size at a particular pediatric window but brith weight, I don't think so.
One piece of this history that I have lived, is an adverse result from lack of vaccination. I contracted mumps at age 8 in 1964, before a vaccine was available. In turn, I developed encephalitis as a complication of the mumps, and that killed the auditory and vestibular nerves on my left side. I am stone deaf in my left ear and must use vision to compensate for the lack of vestibular function.
[off-topic? And long!]
Brian:
One point would be the modest pay and long hours means money is a unlikely to be the main motivation factor for most scientists, compared to alternative ways of earning.
For research scientists, it isn't ultimately money driving the research. There are easier ways to make a living and for most scientists the pay is modest enough that it doesn't really match the long hours involved, so some other motivation than just money needs to make up the difference. This will probably be more true for those in univesities and research insitutes than the better-paying companies, but I don't think there is some giant leap in source of motivation to work as a scientist in a company as some make out. I can't speak for others, but I would think for most scientists motivations include "working out how it works", "making a difference", "developing new things" or the like. They may seem clich�d, but they are real motivation factors to a lot of people I know.
You could point out that with the skills most scientists have, they could easily enough take up other employment that would be better paid. So that I don't speak for others, I'll use myself as an example. I work as an independent (i.e. freelance) computational biologist. I could work as a website developer and earn good money on more sensible hours as I just happen to have these skills as a component of my work. Likewise, I could supervise a programming team and so on. But I'd prefer to be trying to figure out how chromatin-level control of gene expression works, how it relates to cancer and developmental disorders and to developing computational methods to infer what molecules interact with what, etc.
In an earlier paragraph I wrote that income would be less of a factor in universities and research institutes, but that the difference in source of motivation wouldn't be as great as some make out. The key difference for income offered by companies is the the incomes usually have to be comparable to the alternative sources of income outside of academia, as these people are leaving academia to take up the position in the company.
You could point out that most academic research is funded from grants which ultimately come from the tax payer, not "big pharma". You could show the fraction of grants that are directly via pharma (i.e. not as many as some people seem to think!) and the nature of the agreements the companies need to sign up to, to fund "public good science". I think it might be useful for the latter to be more widely known--? Where people do get a research grant that has industry contributions, there will be agreements that keep the company(ies) "at arms length". You could point out that universities and grant funding agencies are large institutions that don't like to be compromised and will insist on these agreements.
You could point out that while there are a small number of excessively large pharmaceutical companies are well-known, in practice a lot is done with much smaller companies. I suspect the general public sees the larger players too readily and not the broader spectrum of players involved. A considerable amount of initial development is from very small companies "spun out" of the universities or research institutes themselves, for example.
You should point out that most publications require that the authors disclose any conflicits of interest in the publication itself.
You could point out that the scientific community reacts rather strongly to companies playing with data, conclusions or publications. Or research scientists doing the same, for that matter. I would suspect that most often its scientists who bring these events to light when they do happen.
thank you
thanks..
Vaccines contain neurotoxins. Neurotoxins do cause brain damage (it's within the very definition of the word!) Autism can result from brain damage.
Savant skills that 10% of autistics have can be artifically produced in ordinary people by things such as electromagnetics.
So why's it so hard to believe that autism can result due to brain damage (like from neurotoxins) in someone who otherwise wouldn't have had it occur? (Or result in a brain damaged autistic person in someone where autism naturally would occur!)
The NRC states in their 2004 study that they will do no further studies searching for the connection. Based on their research of the MMR shot having no significant difference in autism between children who received the shot in comparison to those didn't, then no vaccinations cause autism. That's an invalid conclusion! It's the hepatitis shot all babies (except I suppose Amish) get before leaving the hospital that causes autism -- and there's no control for that in the NRC study.
âAll Truth passes through three stages: First it is ridiculed; Second
it is violently opposed; Third it is accepted as being self evident."
â Arthur Schopenhauer (1830)
Paul Offit (and several of the ScienceBlog bloggers) have set a standard. It is not acceptable for scientists to not participate in debates of this magnitude. You must get involved. You must speak clearly, using language the majority of people understand. You can do this via consultations with parents, via blogs, via interviews with media and when you serve on local or national government bodies.