One of my big worries is that the public will someday turn against the autism community. We, and all segments of the disability community, all rely heavily on the public’s good will. One way we could lose that is if epidemics of infectious disease return and people point the fingers at “autism spokesperson” Jenny McCarthy. We as a group could be in for some real trouble.
One reason to blog and advocate against pseudoscience and dangerous celebrity advice is to make it clear that the autism community as a whole is not behind Jenny McCarthy and her crowd.
So you can imagine the dismay I feel when I search for autism related articles in the Nature journals and I hit upon this one, The dangers of denying HIV.
Why would that article come up using the search word “autism”, I wondered. AIDS denialism is a truly horrible movement in the world. It leads, quite clearly, to disease, suffering and death. Probably no where is AIDS denialism more a problem than in South Africa. The author of this brief note in Nature, Seth Kalichman, notes:
Inadequate health policies in South Africa have reportedly led to some 330,000 unnecessary AIDS deaths and a spike in infant mortality, according to estimates by South African and US researchers. This carnage exceeds the death toll in Darfur, yet it has received far less attention.
This is, he argues, due in large part to AIDS denialism–promoting the idea that HIV does not cause AIDS and encouraging people to forgo treatement.
The tragic events in South Africa have been exacerbated by AIDS ‘denialists’ who, Kalichman alleges, assert that HIV is harmless and that antiretroviral drugs are toxic. The author discusses the psychology of denialism, which he says is “the outright rejection of science and medicine”.
Dr. Kalichman makes it very clear that denialists are acting outside of the boundaries of decency:
Kalichman dismisses denialists’ attempts to portray themselves as intellectually honourable dissidents who question accepted wisdom. He draws clear distinctions between dissidence and denialism; the latter, he says, is merely a destructive attempt to undermine the science.
What does this have to do with autism? Dr. Kalichman groups vaccine-autism groups in with AIDS denialists in their tactics:
Groups that support intelligent design, doubt global warming, claim that vaccines cause autism, argue that cigarettes are safe, believe that the terrorist attacks of 11 September 2001 were an intelligence-agency plot or deny the Holocaust all use similar tactics.
That is an “ouch” moment. To see that the outside world is starting to group autism activists with so many denialst groups is troubling, to say the least. If there are more outbreaks of disease that can be tracked back to vaccine rejectionism sparked by autism groups (for example, recent outbreaks of whooping cough), we are in for a public relations nightmare.
If you don’t think the analogy to AIDS denialists is well earned, consider this passage:
Kalichman describes how quacks, like some of the academics involved, misrepresent their qualifications to create an illusion of authority. One, he claims, treats AIDS with hyperthermia, massage, oxygen, music, colour, gem, aroma, hypnosis, light and magnetic fields, each word followed by “therapy”.
We have certainly seen inflated qualifications and the list of therapies could easily be attached to autism.
It isn’t as though Dr. Kalichman hasn’t read up on autism, either. He concludes his piece with:
Action might have widespread benefits: Paul Offit’s tour de force, Autism’s False Prophets, claims that pseudoscientists and quacks have used similar tactics to parasitize the suffering of desperate parents by persuading them that vaccines cause autism. As Kalichman says, denialism “will not break until the public is educated to differentiate science from pseudoscience, facts from fraud”.
“denialism will not break until the public is educated to differentiate science from pseudoscience, facts from fraud”
I wonder if that time will ever come?
Left Brain Right Brain 
Until we get responsible journalism reporting science without resorting to to the sensational nature of pseudoscience, this will be an inevitable worry.
This is kind of a stretch on this one. I’ve experienced some denial-ism myself when my daughter had 4 month vaccines and had a seizures a couple of hours later. “No way, no how” was this related to the vaccines. The doctor didn’t mention the fact that my daughter being sick and on antibiotics means the vaccines should be delayed until she was well.
Fast forward to 8 month vaccines when she had multiple seizures, some lasting 15+ minutes within an hour of the shots. Once again, from the first millisecond, the doctors said the vaccines were not related. Those early days were rough. Sometimes 8 to 10 seizures per day. Throw seizure meds into the equation and who knows what caused my daughter’s autism or the 300+ seizures to date. I don’t claim to, but this issue is not so clear cut. “We’re right, you’re crazy” doesn’t help either side.
I am sure you will rip me a new one. I do follow your blog and try to read those that I don’t agree with and see things from other perspectives. I would kill for my daughter to grow up and run a smart ass neurodiversity blog. Right now I would settle for a few words and some potty skills.
Sullivan,
Thanks for pointing out the Nature article. I hadn’t seen that.
However, I’m sure the comparison is entirely fair. As far as I know, AIDS denialists do not make death threats against people who disagree with them, nor do they peddle expensive and potentially dangerous “therapies” to HIV-infected patients, telling them that it will “cure” them.
The HIV denialists may object to being lumped in the same group with the “vaccines-cause-autism” crowd.
Prometheus
I must say this is the biggest stretch of logic,I have ever read on this blog…and that’s saying something.
Both the neurodiversity people,and the antivaxers present their own unrealistic and false picture of autism.The former with the nature of just what autism is,and the latter with what causes it.The claim that conditions like being nonverbal,or self-mutilation are “comorbid conditions”,and “a different way of thinking” makes about as much sense as The Geiers claim that testosterone binds with mercury/thimerosol to cause autism.Ari Ne’man is just as wrong as Generation Rescue.A pox on both your houses.
On second thought,maybe this guy does have a point,that,in a roundabout way,could be applied to neurodiversity.I am thinking of that particular element of neurodiversity,who wants to put a halt to all genetic research into autism,citing the same old tired eugenics/abortion argument.
Thank you for picking up on the Nature review of my book Denying AIDS. You make several important points. The connection between AIDs and autism denial is actually quite remarkable. AIDS denialists do make death threats against those who disagree with them and AIDS denialists persuade people to stop taking medications that are proven to improve health. In Denying AIDS I discuss the similarities and differences between AIDS denial and what is happening with autism. AIDS and autism denial have similar origins in fringe academics and pseudoscience. AIDS has Peter Duesberg and autism has Andrew Wakefield. They use similar rhetoric and tactics. When I read Autism’s False Prophets I was continually amazed at the similarities. I hope that Denying AIDS can be useful to get a different perspective in dealing with vaccine hysteria and autism denial. That would be a bonus for me. I should also tell you that all of the royalties from Denying AIDS are donated to buy HIV medications in Africa, something the Nature review failed to mention.
Thanks again
Seth Kalichman
http://denyingaids.blogspot.com
I’ll be getting your book Seth. Sounds excellent.
Dr. Kalichman,
I appreciate you taking the time to respond here.
I was preparing a comment about some of the differences between the autism world and the AIDS world–when it struck me that they are not differences at all.
I was going to point out that big factors in AIDS are different from autism: AIDS is infectious, fatal and has a clearly proven treatment which may not cure but certainly helps. Autism has none of these.
But, I think the problem lies in couching the comparison as AIDS vs. Autism. I think the real denialism in our communities is in Vaccine denial, not Autism denial. While autism “activists” are at the forefront of Vaccine Denial, it is still about vaccines. When speaking about vaccine-preventable diseases, there are direct parallels–the diseases can be fatal, they are infectious and they have a clear preventative treatment: vaccines.
The attacks on science are often (but not always) centered on vaccines in the autism world. I think two efforts by Generation Rescue are certainly in the Denialist camp: their “fourteen studies” website and their misleading pseudo study on vaccines and autism around the world.
There is also an autism-specific world of pseudoscience, of course. Having just written a number of posts about the Geiers and their “lupron protocol”, I can’t deny that we as a community suffer from pseudoscience, especially in treatment.
I’m the author of the Nature Book Review on Seth Kalichman’s book that’s being discussed here. Of course I stand by my equating the vaccine-autism advocates to the AIDS denialists. I read Paul Offit’s outstanding book last year, and was struck by the similarities between his experiences and observations and our experiences in taking on the AIDS denialists. Yes, we do receive death threats (and legal threats) from AIDS denialists. Yes, AIDS denialists peddle quack “cures” for profit (at least, some of them do). Yes, the AIDS denialists make “scientific” arguments that are based on incompetent or fraudulent misrepresentations of the scientific method and literature. Yes, the “scientists” who lead the AIDS denialist movement prey on the emotions of suffering individuals who are very vulnerable to taking bad advice and who will cling to false hopes. Yes, those “scientists” use their professional qualifications to lend an air of authority to what they say, in the full knowledge that lay people can and are fooled by such tactics. And yes, some AIDS denialists are in fact members of the anti-vaccine movement (and also post on Blogs dedicated to the notion that 9/11 was a CIA/Mossad plot…..). So, yes, there are many similarities between these two areas. Those of you who do read Seth’s book will surely have the same reaction as I had when I read Paul Offit’s. I’d encourage you to read it and learn more about the insanity we deal with. Finally, good luck in your efforts to promote sound science in the fight against autism; it’s important on so many levels.
John Moore, Weill Medical College of Cornell University, New York
Thanks for commenting Candy, although I wouldn’t describe what we do as fighting against autism but more fighting against those who would misrepresent autism 🙂
Kev, I think both meanings of what I wrote are relevant – it’s important that the fight to find an effective treatment for autism is based on sound scientific principles, and it’s also important that those who misuse science within the autism world are countered effectively, again using sound science as the basis. I think there is one major difference between the AIDS denialism and autism controversies: AIDS scientists nowadays categorically refuse to debate/discuss anything with the AIDS denialists, because there is no scientific uncertainties left to debate and because the denialists have killed so many people (350,000 in South Africa, as discussed in Seth’s book, and many more in the USA). The quacks in the autism field surely do harm, but not on that scale of mass destruction. In the AIDS field, too many lines have been crossed for there to be any dialog – the “debate” was settled many, many years ago and any more “polite discussions” would be disrespectful to the dead and those yet to die of AIDS.
Here is a comment from the Age of Autism blog which, in my view, demonstrates some of the key points of denialism
Science is giving the “wrong” answer. So, downplay the expertise of the scientists as “religion”. The media is reporting what the scientists have to say. So, downgrade the media as being in the pay of “big pharma”.
In the end, the only person left to listen to on matters of science is Oprah.
And another quote from the AoA blog:
Do I even have to offer any interpretation as to how this fits into denialism?
The problem is that to a lot of people, science is just one more opinion. They don’t see it as an inherently more suitable way of finding out about reality. I think it’s self-evident that science works, whereas no “other ways of knowing” can be reasonably assumed to work at all. But how do you convince people that science is not at the same level as religion, personal experience and magical thinking?
This is all very thought provoking. Perhaps a paragraph from Denying AIDS can help illustrate some of the parallels, at least from my perspective.
From page 167, “And it is not just life-threatening diseases that must contend with medical denialism. In his 2008 book Autism’s False Prophets, Paul Offit describes pseudoscientists who have claimed that autism is caused by roteins leaking through the intestines (leaky gut) and by the toxic effects of mercury contained in childhood vaccines. The rogue scientist that Paul Offit credits with bringing credibility and media exposure to the theory that vaccines cause Autism is British gastroenterologist Andrew Wakefield. It is fair to say that Andrew Wakefield is to Autism as Peter Duesberg is to AIDS. Parents of autistic children, just like people who test HIV positive and those diagnosed with cancer, are desperate to understand how something so horrible could happen to them. As parents grasp for hope they are persuaded by factualsounding
scams put forth by apparently reputable scientists. And it was not
just the parents of Autistic children who are harmed by claims that vaccines cause childhood neurological disorders; vaccine hysteria causes a decline in parents vaccinating their children and resurgences of childhood diseases. Amazingly, we still find more of the same characters who warn against anti-HIV medications and cancer chemotherapy fueling the hysteria against vaccines. Once again David Crowe [a leading AIDS denialist] warns about the hazards of flu vaccines stating in an online magazine article, ‘‘In addition to the health risks of mercury (nervous system damage, cognitive and visual effects), allergic reactions or sensitivities may also develop due to other components of the vaccine, including the eggs used to grow vaccines.’’ Medical hysteria such as that seen in response to vaccines is the mirror image of medical denialism.
Seth Kalichman http://denyingaids.blogspot.com
Dr. Kalichman,
thanks for that excerpt from your book. The parallels are clear.
One question–how important are true “pseudo” scientists to AIDS denialism? There are some notable non-scientists who have made contributions to the autism pseudoscience.
There are also some notable journals who have contributed to the pseudoscience in autism (JPANDS and Medical Hypotheses come to mind).
I would like to go on record here and say that while I a lot of times think the neurodiversity is off base for a lot of lower functioning folks with ASD (again I would give anything for my daughter to grow up and advocate for herself, but right now some verbal, using the potty, and not taking all of the remote controls and cell phones to her secret lair; would be great) … YOU HAVE THE MOST KICK ASS WEB DESIGN OF ANY AUTISM RELATED WEB SITE. Period. Is it WordPress? Whatever it is, you should sell this theme, I would buy it for a premium.
I think a major reason why people distrust vaccines is a mistaken belief that vaccines make money. I am starting a page on my own site (evilpossum.weebly.com) dedicated to debunking this myth.
blog is well quoted excellent.