There once was a time not so long ago–oh, say, four our five years–when the anti-vaccine fringe was looked upon as what it was: a fringe group, a bunch of quacks and quack advocates, all in essence one big conspiracy theory movement, in which vaccines are the One True Cause of Autism. At the time, there were two basic flavors of this movement, the American and the British variety. The British variety began back in the 1990s, fueled by Andrew Wakefield’s pseudoscience, lack of ethics, bad science, and even potentially data falsification for his original 1998 Lancet study that claimed to have linked the MMR vaccine to GI problems in autistic children. Vaccination rates plunged and measles, which was once considered largely conquered in the U.K. 14 years ago was recently declared endemic again. True, Wakefield didn’t do it by himself; he had a lot of help from sensationalistic and credulous reporters and media outlets in the U.K. Even so, the British flavor of the anti-vaccine movement was all about the MMR, fueled by anti-vaccine groups like Jabs and Cry Shame.
Here in the U.S. in the late 1990s, the anti-vaccine movement took a different tack. Based on the ever-popular crank mistake of confusing correlation with causation by noting that the number of autism diagnoses started increasing in the early 1990, around the time the vaccine schedule expanded, it fixated on a single ingredient in vaccines, a preservative known as thimerosal, which contains mercury. In the late 1990s and early 2000s, even though there was no evidence linking thimerosal-containing vaccines to autism, fears over this preservative led vaccine safety authorities in this country to recommend under the precautionary principle that it be removed from childhood vaccines, which occurred near the end of 2001. Since early 2002, thimerosal has not been used as a preservative in vaccines other than the flu vaccine, and there are thimerosal-free alternatives. Several vaccines still have trace amounts of thimerosal, but overall the total exposure to thimerosal due to childhood vaccination is lower than it’s been since the late 1980s. Unfortunately for anti-vaccine loons, autism rates have not decreased back to what they were in the late 1980s. In fact, they are still rising. Epidemiological refutation of a hypothesis doesn’t get much more resounding than that.
Of course, there are still groups that continue to promote the discredited ideas that vaccines or mercury in vaccines causes autism. These movements, epitomized by groups like Generation Rescue, the National Vaccine Information Center (NVIC), and Talk About Curing Autism (TACA) were quite correctly relegated to the fringe, although it is true that radio and TV shows trotted out representatives with alarming frequency for “balance” whenever a little of the old manufactroversy was needed.
Starting around two or three years ago, however, there began a sea change in how anti-vaccine groups like Generation Rescue and TACA started to be viewed. No, it’s not that the views they promote are any less pseudoscientific or quacky. What happened is that GR and TACA got smart. They started cultivating an image as a normal, legitimate autism charities rather than the anti-vaccine, pro-quackery groups that they are. Then, in 2007, they took advantage of an enormous stroke of luck, namely Jenny McCarthy’s joining the vaccine/autism fringe in 2007, particularly her first appearance on Oprah in September 2007. Since then, Jenny McCarthy and her handlers have been working tirelessly to use her to “rebrand” the anti-vaccine fringe as legtimate autism charities, rather than the crank organizations that they are.
I was reminded of just how far they’ve come when a concerned reader sent me this ad for a concert promoted by a radio station in Los Angeles, JACK 93.1. The concert is called Jack’s Fourth Show and features Foreigner, the B-52s, Joan Jett and The Blackhearts, Ratt, Eddie Money, Missing Persons, and–gasp!–George Clinton and Parliament Funkadelic. What prompted the forwarding of this ad to me was this little sentence that appeared at the bottom:
JACK’S FOURTH SHOW benefits Talk About Curing Autism (TACA), a local organization committed to furthering community education about Autism. For more information on TACA then click here.
Noooo! George! Say it ain’t so!
And what does the link say? This:
Talk About Curing Autism (TACA) provides information, resources, and support to families affected by autism. For families who have just received the autism diagnosis, TACA aims to speed up the cycle time from the autism diagnosis to effective treatments. TACA helps to strengthen the U.S. autism community by connecting families and the professionals who can help them, allowing them to share stories and information to help people with autism be the best they can be.
95% of TACA services are provided free to families. TACA currently serves almost 15,000 families with much needed programs, educational services and support. TACA began to serve families in Southern California in 2000 and in 2007 launched chapters outside California to help more families in need.
Sounds really benign, doesn’t it? After all, who could be upset over educational services and support? Well, yes, there’s that, but there’s also more:
TACA believes in early diagnosis, intensive therapies and medical intervention for children affected by autism. With early intervention, medical treatment unique to each person’s needs, and necessary support services for families many children can improve greatly and some can recover from their autistic symptoms. We believe the future is not defined for many children affected by autism. Hope and recovery is possible.
Note that, among the anti-vaccine/”biomedical” movement, “intensive therapies” and “medical interventions,” when coupled with the “hope and recovery is possible” mantra are code words for biomedical quackery and blaming autism on those evil Satanic vaccines. It’s the same sort of stuff that I described the yesterday. It’s support of supplements, gluten-free diets, chelation therapy, all sorts of dubious or even bogus tests for “toxins” and “heavy metals,” hyperbaric oxygen, and more. There is little or no evidence that any of these modalities do anything to “reverse” autism or result in recovery, but the quacks promoting them do make lots and lots of money selling them to credulous and/or desperate parents of autistic children.
The web page then goes on to brag:
What has JACK FM & TACA accomplished together?
Since 2006, Jack FM & TACA have partnered together in four separate events including: Jacks First Show, Jacks Second Show, Jacks Third Show and the Jack Open Golf Tournament. TACA has greatly benefitted from being included in these Jack FM activities.
At these events, we touched over 48,000 people with the event announcements, TACA message, and autism disease awareness. And countless others heard the event announcements via radio spots on Jack FM.
Ugh. First, “Hope and recovery is possible” and now “What has JACK FM & TACA accomplished together?” Note to copywriter: it’s “are possible” and “have accomplished.” I know I’m being pedantic and perhaps even a little hypocritical in making fun of some copywriter for such lapses when I get annoyed at similar comments, but it’s just one of those things that irritate me. Such grammatical lapses do however, seem appropriate for an event of this sort.
In any case, concerts like this as fundraisers are exactly the sort of thing that TACA and GR have been trying to accomplish. Indeed, the ever-reliable promoter of autism quackery and anti-vaccine nuttiness, Age of Autism, is promoting this concert. That ought to tell you all you need to know about it.
My guess is that the celebrities who are appearing at these benefit concerts, the DJ’s promoting TACA events, and the radio station executives who forged this alliance have no idea whatsoever what TACA truly is; so I’ll educate them. TACA is an only slightly less fringe group of anti-vaccine activists than Generation Rescue, which in turn is only less slightly fringe than Whale.to. It promotes the scientifically discredited notion that vaccines cause autism; the quackery that is chelation therapy for autism (a “therapy” that has resulted in the death of a child); unproven supplements for autism; and multiple other highly dubious ideas. Moreover TACA, along with GR, was one of the sponsors of Jenny McCarthy’s “Green Our Vaccines” march on Washington in June 2008, which was anti–vaccine to the core.
Moreover, it’s not just TACA that’s been succeeding at rebranding itself as a legitimate autism charity. Ever since Generation Rescue rebranded itself as “Jenny McCarthy and Jim Carrey’s Autism Charity,” it’s been milking the celebrity circuit for all it’s worth. For example, it’s signed up Britney Spears, Hugh Hefner and The Girls Next Door, and Charlie Sheen, among others, to attend its celebrity fundraisers. To bolster GR’s celebrity fundraising further, it’s also persuaded Lance Armstrong to do celebrity poker events with Jenny McCarthy and partnered with the WWE to do pro wrestling events to benefit itself. Even worse, Jenny McCarthy has parlayed her “mother warrior” persona into a gig of her own, a talk show to be developed with Oprah’s Harpo Studios. But that’s not all. GR has gotten local charities to do projects that raise money for it.
This fundraising concert for TACA is just the example of this strategy that I’ve most recently learned of. It’s all of a piece with a very conscious and calculated plan to become respectable when what TACA and GR promote is highly dubious “biomedical” treatments to which parents like Kent Heckenlively and “Mary” subject their autistic children at a cost of thousands upon thousands of dollars. It’s a profoundly cynical strategy that harnesses the altruism of celebrities, companies, and ordinary people and uses it in the service of promoting pseudoscience. Just as crank groups intentionally obscure the line between real science and pseudoscience, so, too do TACA, GR, and other groups, cloaking themselves in the mantle of concern for autistic children in order to disguise their true agenda.
It is a problem that will get worse, I predict, given that the influx of quackery into academic medicine is similarly obscuring the line between quackery and science.
41 replies on “Jack’s Fourth Show: How anti-vaccine groups rebrand themselves as legitimate autism charities”
What’s so dangerous about this is the patina of suburban respectability this gives to a fringe belief system. When you start scoring your soundtrack with washed-up 1980s nostalgia acts, you’re not anti-science, you’re a State Fair.
It’s excellent marketing for the villains– which is why cults always court and flatter the even tangentially famous– but only adds to the confusion the public will feel about vaccination policy. The creeping feeling that it’s “generally accepted” that there questions about safety and reliability gradually leads to an acceptance of the fear as being justified and legitimate.
The only way to counter this sort of thing is for there to be a genuine penalty for the… well, celebrities seems too strong… performers (?) involved, who, besides what may be a genuine altruistic compassion for autistic children and caretakers, also depend on public goodwill to keep their marginal careers afloat.
As far as some of these acts benefiting from controversy, nostalgia for Gary Glitter went away pretty fast… Licensing your song for a cellphone commercial becomes a lot harder when your band name is most recently connected with quackery, and not the time in 1986 when you made out with a chick who looked like Debbie Gibson.
I love this:
They then go on to absolutely nothing! Too funny. (If it weren’t so sad!)
It reminds me of Scientology tactics
I think it’s considerably lower than that. I don’t know exactly how far you’d have to go back (maybe you have to go back to the 1930s) but cumulative exposure in the late 1980s was around 70 micrograms, whereas today it might reach 3 micrograms (that figure I got from the CDC website once.)
I guess I don’t see where all the bitter, outrage comes in. So, parents are getting information and networking with other parents who are dealing with the same thing?
And, an organization has changed it’s mission as new studies come in?
Hmm…
Why are you so pissed off.
Because, Coaxing, the reduction of herd immunity by so much mis-information about vaccine can cause real injury. Especially to kids (like one of mine) who has medical issues.
Perhaps you should be so kind to tell us why stories like this should not piss anyone off.
Also, you say:
First off, there has been no legitimate studies that show vaccines cause autism, and as each new study comes in that puts another nail in the coffin of the “vaccine cause autism” premise.
Except they have not, Coaxing. Sure, they might have changed their language a bit. For example, GR no longer says autism is a misdiagnosis for mercury poisoning. But their general goal remains the same: to push a fringe hypothesis, and to push quackery.
Now they do it as an “autism charity” and a lot of people with good intentions are fooled by that.
Coaxing:
Not only are these groups promoting infectious disease, but they are consuming donations of money and energy that would most likely otherwise go towards research and care that would, you know, actually benefit people on the autistic spectrum and their families.
Yeah, that pisses me off.
Well, that is a pretty terrifying article about the reemergence of measles.
And, both my kids have been vaccinated so don’t group me in that camp.
I guess my point is:
is vicious vitriol really getting you guys anywhere? These are terrified parents we are talking about. They are looking for answers to help their kids. Desperately looking. Maybe you should be focusing your ire on the CDC to focus on why the hell the autism number are skyrocketing instead of continuing to demonize parents who are scared shitless!
By the way, there is a growing school of thought that the 1 in 150 is grossly over exaggerated and that many of these kids that are being diagnosed with autism have much milder conditions, ie: sensory processing disorder. They are being diagnosed with autism so they can get services easier.
Maybe you should focusing the poison pen at the god damn insurance companies that wont cover therapies!
@Coaxing
Re: the “skyrocketing” number of autism diagnoses.
You kind of addressed this in the next paragraph: misdiagnosis and diagnosis-for-services. Add to that diagnostic substitution and other diagnostic criteria changes, greater awareness and so forth. So, before chastising the CDC, the real question is: are the numbers of actual incidence really skyrocketing, or is the incidence steady, with other factors explaining the apparent rise?
I’d agree with you that insurance companies should cover science-based treatments for individuals with autism. I also agree that the average parent who is scared, frustrated and looking for something, anything to help them should be treated with kindness and respect.
That respect and kindness, though, need not and should not be extended to those who actively promote an anti-vaccine agenda. Those individuals have gone from merely misinformed to promoters of misinformation and lies, and their actions have a pretty big impact on public health. Groups like Generation Rescue and the like fall into this category.
In my case, that might be because I’m a parent of an autistic child, who does not think being scared shitless is either rational or called for, and also don’t see any evidence that autism rates are actually skyrocketing.
True, the CDC would do well to really study these sorts of claims. The UK’s NHS has the lead at this point, having just found that the prevalence of autism among UK adults living in private households is 1%. Some discussion of this can be found in a separate thread of this blog.
Coaxing:
Excuse me, but are we more vicious than the folks at “Age of Autism”? I do not see Orac’s comments are vicious compared to that of JB Handley.
I agree with you about the parents desperately looking for answers, but they are not going to find it at TACA, Generation Rescue or NVIC. What they will become are victims of scam artists who push lots of supplements, treatments and even dangerous drugs on their kids.
How is it vicious to point out that the treatments Kent Heckenlively and “Mary” are subjecting their children to are both expensive, and possibly damaging the long term health of their children?
@Dilaceratus
I’d agree with you in everything… but stop dissing the P!
Clinton/Funkadelic/Parliament a “washed-up 1980s nostalgia act”? You must be Sir Nose D’Void of Funk!
Why did you think I was most distressed over George Clinton’s involvement? Foreigner? Who cares? They’re a washed up 1970s act. The B-52s? They were great in their time, but haven’t done anything decent since the early 1990s.
Are these groups using their increased prestige and visibility to push for better services and support for autistic individuals and their families? If that was the case, then coaxing would have a valid argument.
But these groups appear to spend far more time promoting questionable biomedical treatments. I am not sure how that helps “scared” families.
Ratt!!
c’mon, you can’t dis Ratt.
oh, got my (normal) flu vax yesterday. so far no autism.
the story about the two kids with measles makes me sad. and pissed off at the people who promote bad science. WTF are these people thinking? jenny and jim and the other leaders are probably seeing $$$, but who knows, maybe they *actually* belive.
…nah…it’s the $$$.
jerks.
Perhaps it is the soft spot in my heart for 80s music and the groups that made it, but I think that is what they think they are doing. My guess is that they don’t realize the extent to which this group is off the edge. They hear them say things that sound reasonable. I mean, who ISN’T in favor of better resources for those with autism, and helping them get help? The problem is that they don’t realize that TACA, for example, isn’t actually doing that, and are wasting time and resources on at best useless and more often dangerous “treatment.”
They THINK they are supporting something like the MDA. Instead, they are fund raising for whackaloons.
I know everyone talks about the “sudden awareness” of autism, on all sides of this debate. My boyfriend’s parents are convinced that Asperger’s has only existed since they saw it on Boston Legal. (Apparently they missed the half of my college who are Aspies.)
But here’s the thing. I knew autistic kids in the mid-90’s. Heck, there’s even a Babysitter’s Club about it. And it’s not like Rainman was made last week. So when are these anti-vax people going to admit that this isn’t a “this year!” kind of thing?
Seems like most of you here are a gang of morons.
Explain this- if autism has always been around in large numbers, where are the autistic adults? There should be more than 1 in 50.
Please use your own brains and stop listening to bad writers like this one.
Look up squalene and adjutants.
Obvious troll?
Steve33, see this article on another blog: Autism and adults
Also, can you please tell us how you can be alive without any squalene? Are you missing your liver? For a hint, read this on yet another blog: Swine Flu Vaccine Fearmongering
That’s a nice way to lead into a discussion.
Why? That doesn’t even make sense.
Squalene is produced by metabolic processes in humans. It is used as an adjuvant in flu vaccine in Europe. It is not approved in the US. It appears to be the “villian de jour” in a few anti-vax sites.
An adjutant is an assistant military officer or an asian stork.
Orac, I thought I sent you a link to this last year when it was Jack’s 3rd Show. Whatever the case, the lineups are and have been pretty lame. Wake me when it’s time to get tickets to KROQ’s Almost Acoustic Xmas (whose proceeds benefit Para Los Niños).
I see squalene is the new aluminum, is the new mercury, is the new black. Keep me in vogue, EBM folks. What’s so fashionable about this attractively symmetrical hydrocarbon?
squalene is the flu vaccine adjuvant that they use safely in europe but that the US has never used and won’t use in our H1N1 vaccine. not using an adjuvant means the US uses 10 times more virus to produce a dose of flu vaccine than we could. this means ten times less virus for us to use to produce vaccine for poor nations.
ok, that SHOULD be the issue with squalene. i read some nonsense on the mercola website about gulf war syndrome and squalene, but my free brain space is dangerously low so i deleted it. 🙂
@Joe
The study seems a little small
A total of 19 cases was identified, because only a sub-sample of respondents was selected for a phase two interview. This small base means that great caution is required
in interpreting the population distribution of ASD
I love squalene as much as the next person. After all who doesn’t love to say “squalene.” But if it’s so darn safe because it’s already in the body, why hasn’t the FDA taken Italy’s lead and approved it in the US. I contacted them – the FDA not the Italians – and they’ve yet to get a reply.
If the squalene is stimulating the immune system during immunization could not that stimulation generate anti-squalene antibodies. After all “natural” squalene isn’t usually present in a normal immuno-response
In some good news, the so-called “Australian Vaccination Network”, which should really be called the “Australian Anti-Vaccination Network” may be in trouble.
According to Daniel Raffaele, from the “Stop the Australian Anti-Vaccination Network” group – on facebook here –
http://www.facebook.com/group.php?gid=76305414878 :
@Sid: The last sentence is copy-pasted from the paper, isn’t it?
They do have the confidence interval in the paper: It’s 0.5% to 1.5%. In general, this is comparable to many prevalence studies of autism among children.
@ Joe
The last sentence is copy-pasted from the paper, isn’t it?
———————————————
I can’t cut and paste???
A pop quiz regarding ones affinity for science fiction then a little module 4 small talk just doesn’t convince me
@mimi, Orac:
Oh, I know who George Clinton is, but going off on that tangent would have risked a comment that rivaled the original post’s in length. Still, the truth is, while his 70s-to-early-80s work is vastly influential, for a long time now George Clinton has been playing the State Fair circuit. ( http://www.google.com/search?q=“george+clinton”+”state+fair”)
Worse than that, George Clinton’s a full-blown conspiracy theorist, and has been for a long time. As in, Protocols of the Learned Elders of Zion, Behold a Pale Horse craziness. So him playing a concert for a whacko autism conspiracy group is fairly non-controversial, in the spectrum of his worldview. (Cf. http://www.thewire.co.uk/articles/153/)
Anyway, the thoughts in my post obviously couldn’t have referred to Clinton: I leave it as an exercise for the reader to use Google Images to examine photographs of George Clinton and then come up with some method by which he might be publicly embarrassed.
* * *
Foreigner are certainly washed up, and formed as a group in the 70s, but they had hits from 1977 until the mid-80s (“I Want to Know What Love Is”).
…and I really don’t have a dog in this fight. Autism may very well have existed at the same prevalnce for the last 100 years. I don’t know. I just don’t find the evidence (it could have been misdiagnosed so it was misdiagnosed) compelling.
@Sid: You really have no idea what you’re talking about, do you?
Right, I can see that.
Actually, people do normally have some antibodies against squalene. There is no evidence that they do any harm.
The immune system isn’t magical. Substances like squalene don’t have a tag that tells immune cells where they are from.
Nobody keeps a census of adult autistics, but they are around. Some, like Temple Grandin, have adapted and learned to compensate. Most don’t advertise their diagnosis (and older autistics may very well have been diagnosed as “retarded” rather than “autistic”). If you look in the medical literature, you can find a number of studies of adult autistics. Here’s a study of adult autistics born in the 70’s
The paper cites previous studies of adult autistics published as far back as the 1960’s.
Amazing. It’s like some kind of lollapalooza for quacks.
I have a few items on my web site about squalene, for those who are interested. I address the Gulf War Syndrome bit there, as well. For those who don’t mind a spoiler: no, squalene did not cause GWS.
No autistic adults? Are you crazy? The autistic spectrum geneology in my family is a geneticist’s dream – at least a couple in every generation going back to my mother’s aunt (long deceased). As I write, I have a cousin in his 50s with screaming (yet undiagnosed) Asperger’s. He doesn’t ‘need’ the diagnosis at this point in his life. My own son is 22, and has Asperger’s. Over the years he has been to many programs that have had autistic adults participating.
And this may be observer bias, but every single parent of a child with ASD that I talk to, can rattle off older family members with undiagnosed and diagnosed ASD.
These charity things shit me no end. Firstly, by far the most help you can get for your child with ASD is through the school, government or medical systems. Secondly, I have looked at the required reporting of what percentage of charity funding goes towards overhead for the organisation. If you think that the $100 (or whatever, I just picked a figure) you are paying to see the B52s is going to services for children with ASD, think again. Upwards of 80 percent goes to overhead, such as the big fat salaries of the CEOs.
This new feel-good stuff, tricking people to support them, is driving me crazy.
I agree with you about the parents desperately looking for answers, but they are not going to find it at TACA, Generation Rescue or NVIC. What they will become are victims of scam artists who push lots of supplements, treatments and even dangerous drugs on their kids.
How is it vicious to point out that the treatments Kent Heckenlively and “Mary” are subjecting their children to are both expensive, and possibly damaging the long term health of their children?
Posted by: Chris | September 25, 2009 1:21 PM
But those chelation treatments and other dangerous/tortuous treatments are for the children, right?
One would think folks like “coaxing” would be bothered by the horrors that are marketed by these groups.
military wife – I’ve pointed out this aspect of “anti-vaxxers” in the past. Look at someone like Dr Jay, who recommends against vaccination because he doesn’t like the scientific studies that have been carried out, and don’t think they have been done properly, and don’t show that vaccines are safe.
Yet, this is the same guy who had no problems with his patients using _chelation therapy_ for the friggin treatment of autism, despite the fact that there is no science showing that it is either safe OR effective! But he didn’t care enough to even investigate it (and got schooled three ways from Sunday by the comments on this blog).
It wobbles the mind, how these folks get themselves into a huge tizzy over something like vaccination, and hold it to an exceedingly high and unmeetable standard, but when it comes to alternatives, they have no discrimination at all!
(it’s kind of like accusing MDs and pharma of being only in it for the money and then buying Gary Treudeu’s book after seeing it advertised in an informercial)
Have you thought of emailing these bands to see if you can have any of them drop out? If any of them have sense and don’t know what they’re supporting, maybe a well written letter with good points can get them to withdraw?
Just a thought.
The reason I am so pissed off about the anti-vax movement is the same reason I am pissed off when I see an infant in an automobile without a car seat. It is also the same rage that occurs when I see some asshole riding a motorcycle with no helmet. These are decisions that effect ME when an accident happens and finite medical resources are used to help clean up the mess. Choosing to NOT vaccinate your child effects more than just you and your child. If you forego an ounce of prevention, you had better be ready to refuse a pound of cure.