The Most Bizarre Autism Hypothesis Yet

Banner ad for a video and ebook promising to explain how "Global Elite Uses Vaccines to Create Autism", and also "How Autism Profits the Globalist Cronies"

A commenter on one of Orac's recent posts linked to this website, which lays out one of the most ludicrously counterfactual Autism Hypotheses I've ever seen: the global elites are deliberately making people autistic (using vaccines, obviously) because autistic people make better, more docile workers.

Graphic from anti-vaccine crank website showing the All-Seeing Eye as it appears on the Great Seal of the United States, as the capstone floating above a pyramid, with the Eye of Sauron photoshopped in as the pupil of the eye. The words "Neo Aristocrats" are superimposed over the eye, and over the pyramid below are the word "Servants" with a red line below it, and the words "Delta Technicians" (a reference to the caste of developmentally disabled menial laborers from Brave New World) below that. Below the picture is a quote from Lord David Freud, a Conservative member of the UK's House of Lords, in which he talks about the benefits to businesses of hiring autistic workers. He says, "... it makes good business sense to employ people who are reliable, punctual and loyal; people who have good attention to detail and concentration levels..." Indeed it does! But that doesn't mean people are running around zapping people with Autism Rays, or even hiring as many of us as there are who need jobs.

Now, if you're like me, you moved right past the first two absurd premises --- vaccines cause autism and big pharmaceutical companies want to make people sick --- because you've heard them so many times. No, what floored me was the immense, crushing irony of their believing that autistic people make such desirable employees.

There's that Brave New World reference again

Do they not know how many of us are unemployed, underemployed or mal-employed*?

They cite Goldman Sachs UK's recent decision to offer (paid!) internships and job placements to qualified autistic people in London as proof that autistic people make desirable workers, but they totally miss the fact that the company had to set aside these positions specifically for autistic applicants. Not only that, but this program (and others like it, at other firms like SAP and Freddie Mac) represents a long-overdue first step toward integrating autistic people who are willing and able to work into the mainstream economy. A first step. A departure from the way things are normally done. And a drop in the bucket compared to how many autistic people are still shut out of the conventional job market.

There is definitely a flaw in your plan for world domination if you've designed the perfect army of loyal minions, but most of them can't get a job working for you.

*Malemployment, if you didn't know, is Mark Romoser's term for the scenario in which a lot of autistic adults find ourselves: working at a job far below your skill level and at a task for which you are unsuited. Like, say, an autistic person with an advanced degree working food service, where they struggle to keep up with people's orders and to talk to customers and prepare food at the same time. Romoser wrote an article about it, but it is behind a paywall. You can buy the article from Amazon for a lot less than you would pay if you got it directly from the journal (i.e., six dollars as opposed to fifteen), but it's still not free.

The Delusion Illusion

There's a very interesting discussion in the comment thread on this post at Respectful Insolence; it's about something that's definitely been on my mind a lot as a skeptic, which is the problem of Why People Believe Weird Things.

Here's how it starts:

... [T]he people who claim that the vaccine is useless, and that polio eradication is the result of sanitation, must be mentally challenged at some level. There are not many of them I don't think --- their numbers obviously are a lot less than the incidence of schizophrenics, for example, and I have to wonder about the ability of those folks to organize rational thinking.

What this commenter is doing is trying to grapple with how a person could believe something that is obviously false. (In this instance, it's not just obviously false but also dangerous, in that the belief that vaccines don't work leads people to decide not to vaccinate themselves or their children, which undermines herd immunity and puts other people at risk of disease).

The conclusion he comes to --- that it must be mental illness that makes them cling to their counterfactual beliefs, despite any and all contradictory evidence you might throw at them --- is one I've seen a lot of people use to try and explain other people's mind-bogglingly irrational beliefs or bizarre or evil actions. I see it most often in this latter context, where someone commits a horrible crime, like mass murder, and in the news coverage the label "disturbed" or "troubled" or "mentally ill" or "unstable" gets attached to the perpetrator. (Even if he had never been to a psychiatrist in his life.)

It's easy to understand why a non-mentally-ill person would think that --- you see someone do something that you would never do, that you cannot even fathom doing, and you want to know what could possibly drive someone to do it. If imagining yourself in their shoes doesn't give you an answer, you're left with the possibility that this person must differ from you in some fundamental way.

You don't usually have enough information about the person to guess at how they differ from you, why they make a choice that you would not make under the same circumstances. (Just so you know, the choice I'm thinking of is the choice to become an anti-vaccine activist, not the choice to commit mass murder. Insert joke about the indistinguishability of those two things here.)

Anyway, for people with no experience of mental illness themselves, "mental illness" seems to function as a kind of conceptual black box that can be invoked to explain anything anyone does that otherwise defies explanation.

It also works to preclude introspection, to cordon off the person being labeled as mentally ill as not needing any more explanation. If someone is violent, their violence is a symptom of "mental illness," not a universal human tendency aggravated by social conditions. You don't have to ask any questions about, say, which human lives society values over others, or about whether there might not be conflicting cultural messages about violence (i.e., violence is bad but you're not a man unless you are capable of violence), or anything like that. No one need be examined or judged except the person who acted out.

Similarly, if someone is being illogical, or ignoring evidence, or deceiving hirself about something, you need not ask whether you might not be deceiving yourself about something else. The person making the illogical argument is not demonstrating the limitations and biases of human thought, to which all people are susceptible --- no, they're just crazy.

It's an easy explanation, but it's wrong and it makes life a lot harder for people who do have mental illnesses.

Here's another comment that explains how that works:

People who argue against vaccination are dangerous extremists. They are irresponsible and willfully ignorant. Their lies and manipulation are not a political issue for me, they're an intensely personal slight on who I am, and a threat to my very life.

It's clear that you can't grasp why your ableist language is problematic in this context, so I'll break it down for you.

1. Virtually the entire foundation of the anti-vax movement is the lie that vaccination causes autism and other developmental disabilities.

2. These people refer to non-neurotypical and developmentally and physically disabled people as "vaccine damaged", "broken", "stolen", "lost", and "soulless", among others.

3. Their argument is that death by vaccine preventable disease is better than life with a disability.

4. When presented with the fact that many disabled and chronically ill people are at greater risk of dying of VPDs they often claim that it's simply Darwinism in action, that the virus is cleaning up the gene pool.

5. It is not uncommon for these people to abuse, and even kill, their own disabled or non-NT children. When they do so they are often lionised by their peers, told what good parents they are, and let off by the just system because having to live with their (now dead charge) meant they'd "suffered enough."

Ergo, when you breeze in and spew back the same rhetoric as them, equating their deliberate cruelty and ignorance with developmental disability, then you're as bad as they are. You're saying "These people are bad, they're doing the wrong thing, they must be mentally disabled."

I can bring a fairly recent comparison to mind, that of the media reaction to pretty much every instance of an American gunman mowing a group of innocent people down. Do they say "He must be angry" or "He's a truly awful man"? No. They claim he must be autistic, or schizophrenic. Just like you they conflate wrongdoing with disability or mental illness, because Cthulhu knows there isn't already enough stigma around either topic, or enough fear or disgust at those of us on the receiving end.

Clear now? If the anti-vax monkeys shit in their hands and fling it, you're not going to make them stop by curling one out into your own palm, and lobbing it into their cage.

This same commenter also makes another important point, that being delusional is not at all like being a crank with a megaphone (or a seat in the U.S. House of Representatives):

The kind of fixed, delusional beliefs that go along with schizophrenic mental illness are typically just as distressing to the person with the diagnosis, if not more so. Watching someone in the grip of a florid delusion is very different to watching the majority of the anti-vax crowd's stubborn refusal to heed facts. I've seen people with various MIs, eating disorders in particular, who know that all food isn't poison, but can't make that inner dialogue relinquish the claims it makes. With my OCD I am excruciatingly aware that doing Y won't stop Z from happening, but knowing that truth, and feeling that it's safe to act on it feel like they're a million miles apart. 

So obviously, anyone who is genuinely suffering compulsions or delusions requires help and support, and an understanding that it's not deliberate. The anti-vax crowd requires a cluebat to the brain, perhaps in the form of a trip to somewhere that VPDs roam unchecked.

I've never been delusional, exactly, but I have had severe depression, and what this person says about knowing that what you're thinking is wrong but still being powerless to stop the thoughts rings very, very true.

I can't imagine a person stuck in that kind of epistemological nightmare state would be very likely to get up on a soapbox to try and convince other people to adopt the same delusions.

No, that sounds more like the behavior of someone who has never had cause to question their own grip on reality.

Anyway, I'm going to bastardize Occam's Razor and say that you don't need invoke a relatively uncommon phenomenon* to explain something that could just as easily be accounted for by something more commonplace.

Normal, baseline human thought is prone to a whole bunch of biases, errors, shortcuts and unconscious distortions that make each person a sort of Unreliable Narrator** of their own life.

Here are a few that I could see making someone think vaccines cause autism:

1. People prefer stories to lists of things that happened. (Thus, if one thing happens after another thing, you might see a connection between the two, even if there is none. Also, one person telling a very personal, emotional story is going to move you more, and stick in your mind longer, than someone throwing a bunch of statistics at you.)

2. People tend to idealize the past. If you didn't notice that your child was different right away, but only once they started to miss developmental milestones, you might start remembering them as more ideally "normal" than they really were as infants.

3. People like to think they are more or less in control of what happens in their lives. So thinking that their child is autistic because they chose to vaccinate hir might, weirdly, be less scary than thinking their child just is autistic and there was no way they could've prevented it***.

4. People's experiences color their view of the world. Along with #1 and #2, this one could make a person who had seen their "normal" baby suddenly develop autism in toddlerhood blame vaccines, and also greatly overestimate how drastically the prevalence of autism has risen. (At the same time, this explains why so many people feel like they can just opt out of vaccination; unless they're a lot older than most new parents are, they don't know what a lot of the vaccine-preventable diseases were like.)

5. People also tend to believe what the people around them believe. If your friends tend to mistrust doctors and medicine, and prefer "alternative" medicine, you might find it easier to believe that modern medicine's great accomplishments, including mass vaccination, aren't really that great and doctors just took credit for something that was already happening (e.g., the first comment I quoted, where the commenter mentioned having heard people say that improvements in sanitation, not Jonas Salk's vaccine, were responsible for eradicating polio in the U.S.), or even that modern medicine is making us sicker than we were in the idyllic past. (See also #2).

Finally, I don't have data on this (will look for some, but that's another post), but I strongly suspect that believing something made your child autistic correlates with seeing autism as The Worst Thing Ever.

*Mental illness is actually not super-uncommon, but it is still definitely a minority experience

**Everyone else is even less reliable at describing your life, though. So you still win.

***This probably won't matter to people who've managed to accept their child's autism; they tend to care less about why their child is autistic and more about how to help them live a full, independent life.

Is Fear of Vaccines a Liberal Thing?

That's what I had always thought --- that the right wing can have their creationists, their global warming deniers, their opposition to stem-cell research, and whatever else, but we on the left have to claim the lion's share of the anti-vaccination crowd.

Photo taken by Flickr user captaincinema

I believed this mostly for two reasons: first, most of the anti-vaccination rhetoric I had heard focused on scary chemicals that may or may not be present in vaccines, and scary-chemical rhetoric is also a staple of diverse left-leaning causes ranging from the legitimate (i.e., environmentalism) to the kooky (alternative medicine, the cult of the "natural"). The second reason is that, to the extent that the anti-vaccine celebrities I'd heard of can be said to have politics, their politics tend to be Democratic. The one obvious example is Robert F. Kennedy, Jr., a Democrat and prominent environmentalist, and the two other anti-vaccine celebrities I can think of, Jenny McCarthy and Jim Carrey, aren't involved very much in U.S. politics, but the profiles of them I linked to suggest that they're Democratic-leaning.  

Anti-vaccine booth at the 2008 Netroots Nation convention in Austin, TX. Photo credit: Lindsay Beyerstein

The famous science writer Chris Mooney was also under the impression that anti-vaccine-ism is a crank ideology peculiar to the left, though I'm not sure he is anymore.

The mass freakout on the right over Gardasil made me reevaluate that impression, though.

It's true, Gardasil is a special case because it's a vaccine for adolescents --- and, initially, adolescent girls, although it's now recommended for all young people --- meant to protect against the cancer-causing strains of human papillomavirus, which spreads through genital contact. That puts it squarely in the middle of the Religious Right's Freakout Zone, which encompasses anything involving young women and sex.

I would've been perfectly content to accept just that explanation for the anti-Gardasil backlash, but then Michele Bachmann came out with her howler about Gardasil causing developmental disabilities. That sounded so much like what I had been hearing from Jenny McCarthy et al. that I started wondering whether anti-vaccine crankery was actually bipartisan.

There have been a lot of polls about people's attitudes toward vaccination, but I can't find very many that also include respondents' political affiliation. 

Chris Mooney wrote about two polls suggesting that anti-vaccine sentiments are spread evenly across the political spectrum: a USA Today/Gallup poll from 2009 that asked people to identify themselves as liberal, conservative or moderate and then asked them whether they had heard of Jenny McCarthy and whether they agreed with her or not; and a Pew poll, also from 2009, that asked, among lots of other things, whether children should be required to be vaccinated or whether that choice should be left to their parents.

With above photo, anti-vaccine protest signs at a Tea Party Express rally held on April 8, 2010 in St. Paul, MN. Photo credit: Fibonacci Blue

Larger version of printout attached to sign in lower half of the above pair of photos

Mike the Mad Biologist wrote about another Pew poll from 2009, this one asking people whether they would get the swine flu vaccine if it were available to them. It found Republicans and Independents more likely than not to refuse it (54% to 41%), while Democrats were almost 2:1 in favor of getting the vaccine. Republicans were also the most likely (54%), and Democrats the least (35%), to say that the news media were overstating the danger of swine flu.

Another poll, this one conducted just a couple months ago by You Gov, found that greater percentages of Republicans than Democrats said they were "not so confident" or "not confident at all" that the current vaccine schedule recommended by the Department of Health and Human Services is safe. Democrats were more likely than Republicans to say they were "very confident" or "somewhat confident," although strong majorities of both parties fall into those two groups.

That poll also asked people which conditions they think vaccines can cause, and Republicans were slightly more likely than Democrats to say vaccines cause autism.

I don't know what the New World Order is, but this graphic is a great example of attributing nefarious motivation to vaccine makers

It's also worth pointing out that there are different fears that underlie different people's opposition to vaccines. Some people might be afraid of Big Pharma profiting off their sickness; others might be afraid of the government telling them what to do with their bodies, or with their children's bodies, and other people might be afraid of the Scary Chemicals in vaccines. 

You can see appeals to all of these different fears in anti-vaccine rhetoric: most obvious (to me, at least) is the Scary Chemicals rhetoric that emphasizes what kinds of scary-sounding things are in vaccines (or, in the case of thimerosal, used to be in vaccines), but there's also the tactic of discrediting anything a medical professional says about vaccines by saying they're being paid off by the pharmaceutical companies. 

One type of anti-vaccine rhetoric I hadn't noticed before I started writing this post is the kind that objects to mandatory vaccines. Even when there's a very good reason for it, like requiring health-care workers to be fully vaccinated because they're in contact with lots and lots of 1) sick people and 2) people whose immunity is compromised.

People protesting a proposal to make swine flu vaccination mandatory for health care workers in New York state in 2009. Both photos taken by Louise McCoy for The Epoch Times

It doesn't take a lot of imagination to see how a libertarian-minded person, probably a lot like the people in the two Tea Party pictures above, might see mandatory vaccination as yet another unwarranted government intrusion into their affairs.  

This old article in the Seattle Weekly about the antivaccination movement in Washington state makes note of the movement's bipartisan appeal:

A closer look at [Washington state Department of Health] data reveals the potent mix of demographics that makes vaccine resistance such a sturdy presence in the state. Some of the highest [vaccine] exemption rates are in eastern Washington, where any kind of government mandate --- whether immunization or taxation --- is viewed with hostility. 

At the opposite end of the political spectrum are the liberal enclaves of western Washington, which are also resistant to vaccines. At Vashon Island's public elementary school, 25 percent of students have skipped at least one vaccine. At the Seattle Waldorf School, ... the number is a whopping 47 percent. 

These schools are part of well-educated and affluent communities that one might think would be most likely to follow the recommendations of scientists and doctors. But in fact, as journalist Seth Mnookin points out in his new book The Panic Virus, they perfectly reflect the base of today's anti-vaccine movement. Its constituents are part of what you might call the suburban counterculture --- parenthood and affluence mixed with creative aspirations, a crunchy-chewy lifestyle, and an inclination to question authority.

Finally, let's look at laws making it easier for people to opt out of vaccination.

Here is a list of states whose laws allow parents to refuse to vaccinate their children for "philosophical" reasons:

• Arizona
• Arkansas
• California
• Colorado
• Idaho
• Louisiana
• Maine
• Michigan
• Minnesota
• North Dakota
• Pennsylvania
• Ohio
• Oklahoma
• Texas
• Utah
• Vermont
• Washington
• Wisconsin

As you can see, it's a pretty mixed bag of "red states" and "blue states."

Autism Congressional Hearing Transcripts: Dan Burton

Still image of Rep. Dan Burton saved from this video

_________________________________________________________________________________________________________________________

Thank you, Mr. Chairman. 

Let me start off by saying, contrary to what has been stated in the media over the years, I am not against vaccination. I believe that vaccinations have a very important place in our society and have given us one of the best health regimens in the history of mankind. People live longer, and live better, and have less disease because we have vaccinations. 

What we have always opposed is putting toxic chemicals, or mineral --- metals --- in the vaccinations. 

Thimerosal contains mercury. When I was a boy, we used to have mercury in thermometers, and they said if you break that thermometer and the mercury gets on your hands, as years went by, that was toxic. 

In Indianapolis, we had a school where, in the chemical laboratory, in the health science room, they broke a vial that had some thimerosal in it, they evacuated the school, they burned the clothes of kids that came into contact with it, and the fire department came in with all kinds of equipment to make sure they weren’t exposed to it. 

Women who are pregnant, they say don’t eat fish that has mercury in it, and they caution them that there’s certain kinds of fish you don’t eat. You don’t drink water that has any mercury in it. There’s all kinds of reasons not to be exposed to mercury, and yet we continue to put it in vaccinations as a preservative. 

In 1929, they came up with thimerosal. They tested it on 29 people that had meningitis. They all died of meningitis, but they said the mercury in the vaccinations, or the thimerosal, didn’t cause any problems, it was not a contributing factor. So ever since 1929, it has never been completely tested, and they continue to put it in vaccinations! 

It wasn’t so bad when a child got one vaccination, or two or three. But when they get as many as 28 or 29 before they go into the first grade, it really hurts them. It causes a cumulative effect. The brain tissues do not chelate it, and it stays in there and causes severe, severe problems. 

Now I had, during the chairmanship which I had in this committee, when I was chair, for six years, we had about four years of hearings. We had people from all over the world: scientists from every part of the world, doctors from every part of the United States, who testified. And people from CDC and FDA said, “There’s no evidence that the thimerosal causes any neurological problems in people who are vaccinated.” And then we kept on, kept on, and finally we had some people from FDA and CDC who came and testified and said --- get this word --- there is no conclusive evidence that the mercury in the vaccinations causes neurological disorders. 

No conclusive evidence. 

Now, that word “conclusive” ought to stick in everybody’s mind, because what it means is there’s a possibility. Now my question has always been --- and I’m convinced that the mercury in vaccinations is a contributing factor to neurological diseases such as autism and Alzheimer’s, I’m convinced of it after all those years we had hearings --- but that word “conclusive,” “there’s no conclusive evidence,” creates a doubt. 

And my question to the presidents and CEOs of pharmaceutical companies has always been, if there’s any doubt, if there’s any doubt that the mercury in vaccinations can cause a neurological problem, then get it out. 

You shouldn’t put mercury in any form in the human body, especially in children in vaccinations. Or adults, in my opinion. 

When we get a vaccination for flu --- every year we get a flu vaccination --- we have thimerosal, fellas. I don’t know if you know that. They’re injecting a certain amount of mercury in your body. And over time, I believe it does have an adverse impact on the neurological system. Of adults. I think it’s a contributing factor to other diseases such as Alzheimer’s. 

Let me just say that the thing we need to do is always err on the side of safety. If the pharmaceutical industry were to go to single-shot vials, then you would eliminate the possibility of neurological problems because there wouldn’t be any mercury in them. 

The last thing I want to say real quickly --- I’ve got 20 seconds --- we passed a vaccine injury compensation fund to compensate those people who were injured by vaccinations. And it was supposed to be something that people could work with the government to get that money --- the pharmaceutical companies were putting money into that fund --- but it’s so hard for a person who’s had a damaged child or a damaged adult to get any money out of that fund, it’s unbelievable. We need to reevaluate that fund to make sure that people who are damaged by mercury in vaccinations need to have access to that so they can at least have some compensation to help with the rest of their lives. These people are going to live sixty, seventy years and they’re going to be a burden. Not only on the families, but on society itself.
__________________________________________________________________________________________________________________________
(end transcript)

You know you're not going to hear anything good when the speaker feels compelled to preface it with, "Now, I'm not against vaccines, but ..."

That's another five minutes of this hearing wasted on the completely fictitious vaccine hypothesis, and it really does not make me feel good about this hearing at all, or about Congress in general and their likelihood of doing anything helpful for autistic people, that this guy, with his thimerosal obsession, was apparently the driving force behind this committee's decision to look into autism. 

On a lighter note, this is the first I've heard anyone suggest that vaccines might be causing Alzheimer's disease, too! 

Autism Congressional Hearing Transcript: Opening Statement (1)

I'm slowly making my way through watching the video of the Nov. 29 congressional hearing, transcribing as I go.


(I'm not just doing it to have a complete, public, textual record; I also find having something I can read helps my own understanding, too.)

I'm going to post a bunch of separate, shorter transcripts here, one for each separate speaker.

Here's Rep. Darrell Issa*, Chairman of the House Oversight and Government Reform Committee, calling the meeting to order and making his opening statement**:
____________________________________________________________

(gavel pounding)

The Committee on Oversight and Government Reform will come to order. This hearing on “1 in 88 Children: A Federal Response to Rising Rates [of autism]” will come to order.

The Oversight Committee exists to secure two fundamental principles: First, Americans have a right to know that the money Washington takes from them is well spent, and second, Americans deserve an efficient, effective government that works for them. Our duty on the Oversight and Government Reform Committee is to protect these rights. Our solemn obligation is to hold government accountable to taxpayers, because taxpayers have a right to know what they get from their government. We will work tirelessly in partnership with citizen watchdogs to deliver the facts to the American people and bring genuine reform to the federal bureaucracy. This is our mission, and I might say today, in many cases we are dealing with people who, because of this affliction, may never pay taxes, but in fact their families and others pay for their entire life. 

Congress spends a lot of time discussing and debating issues, and in determining by our philosophical beliefs what the role of government should be. As we have seen in these debates surrounding TARP, stimulus, healthcare reform, these kinds of issues oft come down to where you fall on an ideological spectrum.

Today is no such thing. We’re having a hearing focused on something that spans from the ideological left to the ideological right. We’re drawing attention to something that has no political affiliation, no partisan allegiance, and sometimes --- and we believe, today --- not nearly enough focus on something that does not shorten life but dramatically --- or even slightly, but usually more than slightly --- reduces the quality of life, both for the individual and for their families.

I’m a father. As far as I know, I’m one of the fortunate ones. I’m not the 1 in 88. But right now, if the numbers are accurate, and if they continue to grow from the now 1 in 88 who are in some way ASD-affected, we in fact have an epidemic. It could be that some of the 1 in 150 at the start of this century was too low, that in fact people were simply not diagnosed. But few people believe that, in fact, there aren’t factors in our society and our behavior, in the air we breathe, the water we consume, or others, that are affecting how many people will be afflicted. 

We’re going to hear from a distinguished panel first, of people who do this for a living, try to get to the causes, prevention --- I won’t say “cure” today --- but at least the treatment, the understanding, and perhaps, in some cases, truly something that would mitigate their suffering. I know they’re frustrated. Congress, although we put nearly a quarter of a billion dollars a year directly into research, has not put the kind of dollars, perhaps, that could bring specific outcomes sooner.

On our second panel, a number of individuals who will say that in fact, one of the problems is we’re looking on one side of the equation and not nearly enough on what to do for the victims of various forms of autism.

The fact is, they’re all right. There is not enough money being placed into the various possible causes of autism. There is not enough study. Our government does not collect statistics as well as perhaps someday soon we will, so that in fact we can find out what the true number is, cross-check every aspect of how that number, which is a human being, came to be afflicted. 

The truth is we have a lot to do. I will not claim that I have come here timely. This is the last two days of my first two years as chairman, and this is our first hearing. But what I will promise you here today is that we will stay involved in this issue. We will stay involved through staff and through, if appropriate, additional hearings. I also would say to our first distinguished panel that one of the most important priorities I place today is in fact that we work with you and help you in this process, that we be a conduit to the rest of Congress on this important issue. In a few moments I’ll be swearing in --- I’m sorry, I’ll be recognizing, by unanimous consent, a number of members who would not ordinarily be here at a hearing, because they are involved in this issue but serve on other committees. 

Additionally, I want to apologize to all of those people who, rightfully so, would be well (?) to be heard here today. I could’ve had a second panel of at least twenty witnesses from organizations and affected individuals. We had the difficult job of selecting just six, and as the ranking member will undoubtedly agree, six is already a fairly large single panel. 

That’s one of the reasons I pledge to you today that any organization or individual that in the next seven days provides to us, as required by our rules, in electronic format --- or, if you give it to us in paper we will try to scan it --- we will include your statements and your information in the record. 

We’ll hold the record open so that the many who could not be heard live in testimony will in fact be at least in the record. I want to particularly recognize Brian Hooker [link] with Focus Autism [link] in the American Academy of Children --- well, actually it’s a long, long title --- sorry --- who in fact has been one of the people who has championed for today’s hearing, and a number of others. They’ve been essential in my getting a better understanding. 

I’d also like to thank --- and we will be recognizing two witnesses, er, two members, on each side: the former Chairman of the [mumble] Committee[***], Dan Burton, who years ago began a process of focusing on some aspects of this terrible disease. We in fact don’t know enough; our goal is to know more, and today is but a down payment on that. With that, I’d like to thank the ranking member for his assistance in putting together today’s hearing and recognize him for his opening statement.

_____________________________________________________
(end transcript)

I won't be offering a whole lot of commentary right now, but I would like to make note of the two people to be name-checked in this short speech: Rep. Burton, whose testimony I will put up shortly and which really speaks for itself, and this Brian Hooker, who is affiliated with some group I'd never heard of called Focus Autism. It turns out to be a crank group dedicated to the notion that vaccines are "an important contributing factor" to autism in children.

So that's not good. We're just in the opening statement, and already the vaccine hypothesis --- which ought to have no place at all in a discussion of how best to spend federal money on autism research, therapies and services --- has been moved front and center.

*I'd post the video, too, but I cannot find a separate clip of just this speech. I can find one for the second opening statement, by Rep. Elijah Cummings, but I can't find one for Rep. Issa's statement. If you can, and you give me a link in comments, I will gladly embed it.

**I'm not going to blockquote my transcripts because I find that, in this blog template at least, blockquoting makes things a lot less readable! These transcripts are going to be kinda long, so I really don't want to sacrifice readability. I will set them apart some other way, like drawing lines above and below the transcribed speech.

***I didn't completely catch this, but looking at Rep. Burton's webpage, he has chaired both the Oversight Committee and another committee, a subcommittee of the House Foreign Affairs Committee. Rep. Issa is probably referring to his past chairmanship of the Oversight Committee. 

What a Coincidence

I just wrote a post about people's attitudes toward vaccination --- particularly the extent to which people worry about vaccines causing autism, and whether that worry leads them to skip recommended shots --- and now I see that Sarah was also moved to write something vaccine-related.

From her Tumblr*:

Pro-vaccine advocacy is not the same as advocating for the rights of autistic people or being anti-ableism. Pro-vaccine advocacy can sometimes repeat the same pernicious, ableist myths about autistic people which are so embedded in the anti-vaccine movement.

She's absolutely 100% right; where the anti-vaccine activists' rhetoric implies that it's better for one's child --- and other people's children, for that matter --- to contract potentially life-threatening, vaccine-preventable diseases than to be autistic, the pro-vaccine camp usually responds with "Nobody wants to have an autistic child, autism is a terrible tragedy and we should hurry up and find a cure, but ..."

It's a conciliatory tactic, meant to convey empathy for the clearly-distraught parents who blame vaccines for their children's disability. And that's good, as far as it goes; everyone deserves to be treated respectfully, and to have their feelings acknowledged and respected when they're debating emotionally-charged subjects.

A discourse that rests on the premise that autistic people should not exist isn't one that respects autistic people. It also implies that there are no autistic people participating in, or watching, the debate, and that's just not true. We're here, we have a personal stake in these issues; we deserve to be equal participants in the public discourse around autism.

*I can link to the post itself, but currently if I do that you're not able to read it --- other text overlaps with it. This is one of the many reasons Tumblr fails to appeal to me.

Poll Data on Vaccines Looks Contradictory, But Isn't

Yesterday I ran across two seemingly contradictory factoids about public opinion on the autism-vaccine issue: this column in this month's Scientific American cites a poll* finding that just under half of U.S. adults either believe vaccines cause autism or aren't sure whether they do or not, while Left Brain/Right Brain reports on survey data** analyzed in two articles (full text here and here) in Pediatrics that found 79% of U.S. parents believe vaccines are safe.

So, which of these is true?

I'll start by pointing out that the subset of people who said they were "not sure" about the vaccine-autism issue could probably also fall into the subset of people who said they thought vaccines were safe in the other survey --- people's positions on issues can be pretty elastic, depending on how questions are asked and what kind of answers they think the pollsters want to hear. I think people who fall somewhere in the middle might have even more wiggle room than those who come down more strongly on one side or another.

The undecided group in the Harris/HealthDay poll, at 30% of respondents, was quite a bit bigger than the group professing a belief that vaccines cause autism (18%).

Thus, the proportion of all people who don't actively believe that vaccines cause autism in that survey is 82%, similar to the 79% of people who said they considered vaccines to be safe in the survey from two years ago.

Also, the two surveys sampled slightly different subsets of the U.S. population: the Harris/HealthDay poll was open to anyone over 18 (n = 2,026), while the two Pediatrics articles restricted their data set to respondents with minor children (n = 1,552). One of the articles went further, using only data from parents of children younger than 6 (n = 475).

Compared with the general population of the U.S. (reflected in 2010 census data), the group of people studied in the two Pediatrics articles is younger (the all-parents group was split about 60/40 between people under 40 and people 40+; two-thirds of the parents of young children were under 35; in the U.S. as a whole, a little less than half of all people, and about 60% of all adults, are older than 40), a lot richer and more likely to be female (split about 60/40 in favor of women).

What most interested me was the implication, in the article on parents of young children, that some of the people who think vaccines are generally safe, and believed vaccination was important for a child's health, are also worried that vaccines might cause autism:

Parents reported their attitudes regarding the safety and necessity of vaccines (Tables 2 and 3). The majority of the parents were either confident or very confident in vaccine safety (79.0%) and believed that vaccines are important to children's health (79.8%). Similarly, 73% of parents somewhat or strongly believed that the benefits of vaccines outweighed the risks. ...

Parents were asked to respond to a series of 11 potential vaccine-related concerns and were also given the opportunity of stating that they had no vaccine-related concerns (Table 4). Just more than one-fifth (20.8%) of the parents reported that none of the 11 issues listed were of concern to them. The most common concern reported by the parents was that it is painful for children to receive multiple shots during 1 doctor's visit (44.2%). Other concerns reported by >25% of the parents included their child receiving too many vaccines in 1 doctor's visit (34.2%), vaccines causing fevers in their child (28.3%), children getting too many vaccines in their first 2 years of life (27.8%), and vaccines causing learning disabilities such as autism (26.2%).

The article's authors suggest that these parents are probably weighing the potential risk of autism against the protection from disease, and choosing to vaccinate despite their misgivings because they think the benefits outweigh the risks. (Data from the Harris/HealthDay poll would also tend to support this idea of a cost-benefit analysis; even among people who believe that vaccines can cause autism, a majority thinks schools should require children to be vaccinated).

The other article, the one that studied all parents of minor children, also looked into what sources parents considered credible in the matter of vaccine safety.

Overwhelmingly, the person they trusted most was their children's doctor (76% said they trusted their children's doctor "a lot," 22% said "some" and only 2% said they did not trust their children's doctor); just as overwhelmingly, people put very little stock in what celebrities have to say about vaccine safety (in a clean reversal of the figures for doctors, 2% of parents said they trusted celebrities "a lot", 24% said they trusted them "some", and 74% did not trust them at all). For all the other types of people --- health-care providers apart from their children's doctor, government officials, friends and family, and parents who believe their children were harmed by a vaccine --- most people said they felt "some" trust. Similarly, of the people who look at media relating to vaccine safety, most placed "some" trust in all of the media categories listed: medical organizations' websites (the only category that also had a large number of people saying they trusted it "a lot"), government websites, newspaper or magazine articles, TV, vaccine manufacturers' websites and anti-vaccine websites.

These survey results suggest to me that people aren't the gullible sheep skeptics often accuse them of being. They are wary of anecdotal evidence, give more weight to experts' opinions than to laypeople's, and give the most weight to those authorities they consider neutral, or to have their child's best interests specifically in mind. Also, even without an extensive grounding in virology, immunology or epidemiology, they seem to grasp the importance of universal vaccination in maintaining herd immunity.

People are wiser than the conventional wisdom gives them credit for being.

Freed, G., Clark, S., Butchart, A., Singer, D., & Davis, M. (2011). Sources and Perceived Credibility of Vaccine-Safety Information for Parents PEDIATRICS DOI: 10.1542/peds.2010-1722P

Kennedy, A., Basket, M., & Sheedy, K. (2011). Vaccine Attitudes, Concerns, and Information Sources Reported by Parents of Young Children: Results From the 2009 HealthStyles Survey PEDIATRICS DOI: 10.1542/peds.2010-1722N

*Poll conducted by Harris Interactive and HealthDay, on January 11-13, 2011

**The annual HealthStyles survey, conducted by the CDC and the public-relations firm Porter Novelli, throughout the month of January in 2009

More on "The Geneticization of Autism"

In Saturday's post I quoted at length from Kristin Bumiller's 2009 article "The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy", which explores the social and political implications of a largely genetic understanding of illness and disability. I think almost all the ideas she develops in that article have merit, especially her points about the limitations of a public-health system modeled on the larger consumer economy, and about coercive, eugenic aspects of genetic testing as it is used today in the U.S.

But there was one part of the article that really bothered me, and that's what I'm going to talk about in this post.

Here's the relevant passage:

The most divisive expression of dissent to geneticization is found among groups that seek to document environmental causes of autism, such as the use of mercury in vaccines. These outsiders, dubbed the "Mercury Moms," are engaged in insurgent activism against the medical establishment and most directly the Centers for Disease Control and Prevention (CDC). They claim that the CDC has perpetuated a cover-up of medical evidence confirming the link between thimerosal (a mercury preservative previously used in many childhood vaccines) and the increase in autism. In stark contrast to professionals, parents and activists who subscribe to a genetic understanding of autism, the Mercury Moms are frequently characterized as hysterical and antiscience (Kennedy 2007; Desmon 2008). As Ken Plummer (2001) has suggested in his account of what he calls "intimate citizenship," this kind of very public debate over controversial issues demonstrates that there is something much grander at stake than the validity of scientific research. For the Mercury Moms, their activities fulfill their role as protectors and provide assurance that they have pursued all avenues to help their children. As activists, the Mercury Moms are often marginalized by the media, national autism advocacy groups, and the professional establishment, not only because they dispute official information but also because they amplify the fears of all parents about the possibility of seemingly benign choices, such as complying with childhood vaccination recommendations. Their advocacy is even seen as dangerous because it could lead to widespread rejection of vaccinations that prevent the resurgence of deadly diseases. In part, the marginalization of the Mercury Moms results from their own tendency toward absolutism, but at the same time there is little mainstream recognition of scientific evidence that supports the possibility of links between exposures to toxins and autism (DeSoto and Hitlan 2007).

I know she's writing an academic paper, and a social-science one at that, so she has to be neutral and objective in her language in a way that a blogger doesn't, and that the truth or falsehood of any given hypothesis about autism's root causes is beyond the scope of her article, but it still reads to me like she's giving the much-discredited thimerosal hypothesis equal weight with the prevailing notion that genetics probably play a role in autism.

(I also think she greatly overstates the extent to which most autism researchers think of autism as being 100% genetic*, or the extent to which genetic variations associated with autism are necessarily inherited.)

Most troubling to me is this phrasing, "... environmental causes of autism, such as the use of mercury in vaccines." Using what may be the most exhaustively debunked hypothesis ever to be proposed as an explanation for autism as an example of bias against research into possible environmental causes, triggers, or correlates of autism strikes me as misguided.

It equates two statements --- "Environmental factors may have something to do with autism, either on their own or in concert with genetic predispositions" and "Mercury in vaccines causes autism" --- treating them as equally viable avenues of inquiry, and implying (by treating the latter as merely an instance of the former, broader category) that refusal to entertain the vaccine hypothesis means that one's mind is closed to all environmental hypotheses of autism. That's just not true.

I don't totally hate her analysis of the "Mercury Moms" movement --- I think she's right that they illustrate the lopsided nature of the partnership between the medical establishment and popular health movements, and also that they represent the loudest dissenting voice to the autism-is-genetic conventional wisdom, and that they are often caricatured in sexist tropes, as hysterical, ignorant women. But I think that if she wants to make the point that the autism-research establishment is ignoring potentially fruitful research into environmental factors, she should not use this group to illustrate it; the alternative explanation of autism that they espouse has been investigated, over and over again, and come up empty. Not wanting to pursue a dead end isn't the same as ideological narrow-mindedness, and many of the researchers who dismiss the Mercury Moms with such contempt are also looking into other environmental factors for a possible link with autism.

I can see why this group appeals to her, since, along with loudly repudiating the genetic understanding of autism, and claiming that a ubiquitous, expert-approved medical practice is actually causing the spread of autism, they are laypeople and mothers rather than doctors or academic researchers. They hit all the right notes as far as opposing the "genetic citizenship" model is concerned; I just don't think you can put aside such things like the ever-increasing weight of evidence against their claims, their indifference to this evidence, and the public-health consequences of their anti-vaccination agenda, to say how much of a role the geneticization narrative also plays in pushing them to the margins. I'm certainly willing to believe it's a factor, but I think the biggest factors are the other ones I mentioned.

Bumiller admits as much in the last sentence of the paragraph I quoted: "In part, the marginalization of the Mercury Moms comes from their own tendency toward absolutism ..."

The other thing that annoyed me somewhat was the positioning of two factions that differ on the matter of what causes autism and what kinds of things are likely to be useful in treating, curing or preventing autism, but that agree in their understanding of autism as a disease that ought to be eradicated, as the two opposite poles of this debate on what autism is and what society ought to do about it. There's a third facet as well, one that I know Bumiller knows about, because she wrote an earlier article about it, and mentions it in passing in this one; it's the neurodiversity movement, which she glosses over as another proponent of the idea that autism is genetically determined.

Many of us do think autism has a genetic component, and some of us think it's entirely genetic and has been around for a very long time, but for the most part we don't give a lot of weight to the matter of what causes autism. It's not critical to our objective, which is acceptance and integration into mainstream society.

And there are premises of the "genetic-citizenship" model that we question, or outright reject, just as the Mercury Moms reject the idea that doctors always know best. Many of us reject the ethic of individual self-care that the genetic-citizenship model revolves around, and we certainly reject the idea that it is every citizen's duty to prevent disabled people from being born. We also have a very fractious relationship with the major autism-advocacy organizations, as a search on the term "Autism Speaks" on most autistic people's blogs will tell you.

It seems to me that this article would've been much the richer had it included more of this stuff, maybe comparing and contrasting the ways in which the Mercury Moms and the neurodiversity and disability-rights movements uphold or challenge (because both groups do some of both, I think) the doctrine of genetic citizenship.

Bumiller, K. (2009). The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy Signs: Journal of Women in Culture and Society, 34 (4), 875-899 DOI: 10.1086/597130


*Clearly there are plenty of researchers who think genetics is the major factor contributing to autism, and some who do think of autism solely in genetic terms, but the idea that environmental factors also play a role is hardly out of the mainstream. In fact, there are currently several large studies under way of possible environmental correlates of autism, in part because the environmental issue hasn't been as well-explored as the genetic one, and researchers know that and are looking to change it. That hardly seems to me like the idea of autism having environmental triggers is being suppressed by the scientific and medical communities ...

Too Many, Too Soon?

EXECUTIVE SUMMARY: One of the misgivings about current early-childhood vaccination recommendations is that they involve exposing infants to so many infectious agents. While there's already been research into the effect of multiple vaccines on the immune system, Smith and Woods (2010) are the first to look at whether getting lots of vaccinations very early in life might have any effect on the nervous system.

Using the vaccination records and neuropsychological data on a group of children born between 1993 and 1997 that were gathered and made publicly available for an earlier vaccine-safety study, they did two different group comparisons between children who had received all the recommended vaccines on time and children who hadn't. They found no ill effects of exposure to lots of different vaccines within the first seven months of life; the only effects of earlier vaccination on neuropsychological development that they found were beneficial ones, but these mostly did not survive controlling for other demographic variables.
_____________________________________________

In an interview with The Thinking Person's Guide to Autism editor Shannon Des Roches Rosa, Autism's False Prophets and Deadly Choices author Dr. Paul Offitt mentioned a study published last May in Pediatrics that addresses the "too many, too soon" version of the vaccines-cause-autism hypothesis.

Some parents of very young children, while they might not believe that any single vaccine is dangerous, notice that a lot more vaccines are recommended within the first six years of life now than there used to be, and wonder whether it might damage a child's immune system to expose that child to so many antigens within such a short period of time*.

While there was already evidence that the current vaccine schedule is safe from an immunological standpoint, Smith and Woods (2010) are the first researchers to look at its potential impact on the developing nervous system.

Their study re-analyzes data gathered for an earlier study looking at neuropsychological outcomes in 7-to-10-year-old children exposed to thimerosal in vaccines; those researchers recruited children from four HMOs participating in the CDC's Vaccine Safety Datalink project, tested them on 42 measures of neuropsychological outcomes (which broadly fell into seven domains --- speech and language, verbal memory, fine motor coordination, attention/executive functioning, behavioral regulation, tics, and general intelligence --- and also included two other tests, one of visuospatial ability and another of letter and word identification; see Table C, or pages 9-11 of this document, for a complete listing), and looked for relationships between a child's performance on those tests and the amount of thimerosal that child had been exposed to, as estimated from vaccination records.

That study didn't find much of an effect for early thimerosal exposure --- it found a small scattering of statistically significant effects, but those effects were 1) often not the same in boys and girls, or in children belonging to different HMO groups, 2) evenly divided between higher mercury exposure --> better outcome and higher mercury exposure --> worse outcome, and 3) very small. That suggests to me that many of those associations might simply have been noise.

What's more important in terms of whether the "too many, too soon" hypothesis holds water is the raw data those researchers collected --- complete vaccination records and neuropsychological test results for 1,047 children. The existence of those data allowed Drs. Michael J. Smith and Charles R. Woods to look for relationships between timing of vaccination in early infancy and later neuropsychological outcomes.

They compared outcome data for the 491 children who got all the recommended vaccines on time (which they defined as within 30 days of the recommended age, given in months, on the CDC's vaccination schedules for 1993-1997) with the data for the rest of the children (who fell into two categories: those who had gotten all of the recommended vaccines, but just didn't get them at the recommended time, and those who hadn't gotten all the shots by the time they participated in Thompson et al.'s study), finding that children who got all their recommended shots on time performed better than the other children on 12 of the 42 outcome measures --- the Boston Naming Test, the grooved pegboard (a test of fine-motor coordination), the metacognition subscale of the Behavior Rating Inventory of Executive Function, teacher ratings for inattention and hyperactivity, parent rating for stuttering, and verbal, performance and full-scale Wechsler IQ. There was no measure on which they performed worse than the less-vaccinated group.

Because there were demographic differences between the families of children who were vaccinated on time vs. children who weren't, the researchers also did a multivariable analysis to try and control for those factors. That analysis found only two (small) between-group differences, but both of these were also in the fully-vaccinated kids' favor. (They scored 1 point higher on the speeded-naming subtest of the Developmental Neuropsychological Assessment's Language and Communication domain, and also tended to have slightly higher performance IQs).


They also did a secondary analysis, dividing the study participants into three groups, based on "timeliness" of vaccine receipt. The "most timely" group (n = 310) was created by dividing all the children who'd gotten all 10 of the vaccines recommended for the first year of life into quintiles based on how old they were when they completed the schedule. The first two quintiles, or the 40% of children who completed the schedule earliest (i.e., within the first seven months of life), constituted the most timely group, while the children who had gotten six or fewer of the ten recommended vaccines by the time they were seven months old made up the "least timely" group (n = 112).

(The rationale for doing this secondary analysis was to look for any effect of spacing all the vaccinations really close together --- the children in the "most timely" group had crammed the ten first-year vaccines into the smallest window of time. Similarly, the group they're being contrasted with represents the opposite extreme in terms of vaccine compliance --- these are the children who've gotten the fewest shots within that same seven-month window of time. If there is a spacing effect, it ought to show up in a comparison between those two groups, if it shows up anywhere.)

The results of the secondary analysis were a lot like those of the primary analysis: univariate analysis turned up fifteen outcome measures on which the most-vaccinated children outperformed the least-vaccinated ones (including most of the same measures identified as showing a difference between groups in the primary analysis), while multivariate analysis found no difference between the groups. Overall, this study failed to find evidence of any deleterious effects of multiple vaccinations on neuropsychological development, even when those vaccines are spaced very close together very early in life.

(One of the potential objections the authors deal with in their Discussion section involves the fact that the vaccination schedule has changed since the mid-1990s, but they figure that, since most of the children in their study received the version of the combined diphtheria, tetanus and pertussis vaccine that includes whole-cell pertussis, their overall antigenic load would be heavier, not lighter, than what children are exposed to today. See my note below for more explanation about changes in the pertussis vaccine.)


Sources:
Smith, M., & Woods, C. (2010). On-time Vaccine Receipt in the First Year Does Not Adversely Affect Neuropsychological Outcomes PEDIATRICS, 125 (6), 1134-1141 DOI: 10.1542/peds.2009-2489

Thompson WW, Price C, Goodson B, Shay DK, Benson P, Hinrichsen VL, Lewis E, Eriksen E, Ray P, Marcy SM, Dunn J, Jackson LA, Lieu TA, Black S, Stewart G, Weintraub ES, Davis RL, DeStefano F, & Vaccine Safety Datalink Team (2007). Early thimerosal exposure and neuropsychological outcomes at 7 to 10 years. The New England journal of medicine, 357 (13), 1281-92 PMID: 17898097

*Actually, while it looks like we're throwing more things at young children's immune systems now than before, when you just look at the number of vaccines children receive now versus thirty years ago, the composition of vaccines has changed, too, so that each vaccine now contains fewer antigens than they used to. Looking at this table in a 2002 review on vaccine safety by Paul Offitt and colleagues, the switch from using the whole bacterium that causes whooping cough, Bordetella pertussis, to just using the toxin it secretes cut the number of distinct antigens in the pertussis vaccine from around 3,000 to just two to five (depending on how many other bacterial cell components are still mixed with the active ingredient, the toxin). That whole-cell pertussis vaccine looks like the proverbial pig in the python, swelling the total number of antigens in all the recommended vaccines to 3,000+ during the time period in which it was used. Now, with the adoption of the acellular pertussis vaccine, the total number of antigens in all the early-childhood vaccines is about 125, give or take a few. So the question of antigen overload is actually a lot more complicated than just comparing the number of vaccines recommended at different points in time, and, if anything, a closer look seems to tell us that young children's developing immune systems are less overloaded by the current vaccine schedule, not more.