Still Yet Another Note on Vaccination

Just got vaccinated again -- and still don't feel any more autistic.

Not even a bit of soreness this time!

Yet Another Note on Vaccination.

I just got vaccinated. Again.

Still don't feel any more autistic.

I do feel a bit of soreness, though.

On Things That Won't "Cure" Autism

One of the tendencies of the assorted parents' groups which I find most annoying is the tendency for many of them to promote an attitude of desperation towards autism -- and, with it, the idea that a parent should try anything and everything which could help their child "recover". In practicality, of course, this means anything or everything that someone somewhere claims will help.

The fact that people get swindled as a result is among the least appalling aspects of this.

The list of things which have been promoted as such -- and which parents have tried -- is absurdly long and often just plain absurd. Seriously, it almost mocks itself at times. If it wasn't for the fact that parents are actually doing these things to their kids (which I cannot emphasize enough) out of desperation to "cure" or "recover" their children, it would actually be comedic.

Among other things, the horrific list of things which parents have done includes (but is by no means limited to):

•  Feeding their kids massive overdoses of vitamins to the point that they suffer from or risk vitamin poisoning.
• Putting their kids into a potentially explosive tube full of compressed air for a prolonged period of time (usually around an hour per session).
• Getting their kids high on marijuana.
• Forgoing protection against potentially deadly diseases.
• Strapping their kids down for several hours while they pump an irritant into said child's veins.
• Deliberately infesting their children with intestinal parasites.
• Chemically castrating their children.
• Feeding their kids an industrial chemical which has never been subjected to proper safety testing.
• Making their children drink an industrial bleaching agent.
• Giving their children bleach enemas.

 
 This is a highly incomplete list.

When I say that the stigmatization and panic-mongering that organizations like Autism Speaks engage in has real consequences for autistic people... the above is just one of the things I'm talking about.

Take this as you will.

Edit: Was corrected on a relatively minor point.

Still Yet More on Vaccination

I just got vaccinated -- yet again! And, once again, the vaccine contained mercury!

Nope, still not feeling any more autistic. I'm noticing a pattern here...

On Wakefield and Fraud

On his blog, the rather well-known blogger and commenter, Harold Doherty, writes:

I was aware that a medical society tribunal in the UK had found problems with the MMR study but I was unaware that a court of law, or governing medical society tribunal, had found Wakefield guilty of the serious offence of fraud.

If anyone knows which court of law, or governing medical society tribunal, found Dr. Wakefield guilty of fraud could you post a link to this site please?

The "medical society tribunal" Doherty refers to was the British General Medical Council, (or "GMC"; see their website here). They are hardly a mere "medical society tribunal" -- they're a governing body established by legislative action. They have a direct government mandate... and the legal authority to control who can and cannot practice medicine in the UK.

I suppose you could call them a "governing medical society tribunal", per Mr. Doherty's instructions. I would not: they're a regulatory body tasked with a judicial function. They are not part of any medical society (although the memberships certainly overlap!).

In its sanction against Dr. Wakefield, the GMC found (among other things):

The children described in the Lancet paper were admitted for research purposes under a programme of investigations for Project 172-96 and the purpose of the project was to investigate the postulated new syndrome following vaccination. In the paper, Dr Wakefield failed to state that this was the case and the Panel concluded that this was dishonest, in that his failure was intentional and that it was irresponsible. His conduct resulted in a misleading description of the patient population. This was a matter which was fundamental to the understanding of the study and the terms under which it was conducted.

In addition to the failure to state that the children were part of a project to investigate the new syndrome, the Lancet paper also stated that the children had been consecutively referred to the Department of Paediatric Gastroenterology with a history of a pervasive developmental disorder and intestinal symptoms. This description implied that the children had been referred to the gastroenterology department with gastrointestinal symptoms and that the investigators had played no active part in that referral process. In fact, the Panel has found that some of the children were not routine referrals to the gastroenterology department in that either they lacked a reported history of gastrointestinal symptoms and/or that Dr Wakefield had been actively involved in the process of referral. In those circumstances the Panel concluded that the description of the referral process was irresponsible, misleading and in breach of Dr Wakefield’s duty as a senior author.

The statement in the Lancet paper that investigations reported in it were approved by the Royal Free Hospital Ethics Committee when they were not, was irresponsible.

In other words, the GMC found that Wakefield lied repeatedly in the Lancet paper. Moreover, he concealed financial interests in the results being what they were:

Regarding the issues of conflicts of interest, Dr Wakefield did not disclose matters which could legitimately give rise to a perception of a conflict of interest. He failed to disclose to the Ethics Committee and to the Editor of the Lancet his involvement in the MMR litigation and his receipt of funding from the Legal Aid Board. He also failed to disclose to the Editor of the Lancet his involvement as the inventor of a patent relating to a new vaccine for the elimination of the measles virus (Transfer Factor) which he also claimed in the patent application, would be a treatment for inflammatory bowel disease (IBD).

In summary of their findings, the GMC wrote:

The Panel made findings of transgressions in many aspects of Dr Wakefield’s research. It made findings of dishonesty in regard to his writing of a scientific paper that had major implications for public health, and with regard to his subsequent representations to a scientific body and to colleagues. He was dishonest in respect of the LAB funds secured for research as well as being misleading. Furthermore he was in breach of his duty to manage finances as well as to account for funds that he did not need to the donor of those funds. In causing blood samples to be taken from children at a birthday party, he callously disregarded the pain and distress young children might suffer and behaved in a way which brought the profession into disrepute.

As such (among other things):

The Panel concluded that Dr Wakefield’s shortcomings and the aggravating factors in this case including in broad terms the wide-ranging transgressions relating to every aspect of his research; his disregard for the clinical interests of vulnerable patients; his failure to heed the warnings he received in relation to the potential conflicts of interest associated with his Legal Aid Board funding; his failure to disclose the patent; his dishonesty and the compounding of that dishonesty in relation to the drafting of the Lancet paper; and his subsequent representations about it, all played out against a background of research involving such major public health implications, could not be addressed by any conditions on his registration.

In short, Wakefield was found to be a dirty, rotten liar who faked data for publication in The Lancet. In common scientific parlance, they found that the paper was a classic example of academic fraud.

Edit: Kev of LBRB does an excellent analysis of the issue here, focusing less on the legal findings and more on illustrating the fact that Wakefield's paper was fraudulent.

An Open Letter to Buzz Aldrin

Today is Autistics Speaking Day. For those of you who are unfamiliar with the event, it's an autistic reaction to the highly-misguided "Communication Shutdown Day", a day in which we autistic people make as much online "noise" as possible... on the day in which hordes of people are voluntarily abstaining from our preferred means of communication.

I won't discuss why the whole idea is a bad one. Others have already done so -- far better than I ever could. Instead, I'm going to post an open letter to one of the major participants in this farce.

Dear Mr. Aldrin,

When I was a child, the Apollo missions were a great inspiration to me. They truly stand out among the achievements of mankind as a spectacular triumph of science and a shining example of what man is capable of if we truly try. You, along with the other Apollo astronauts, were my childhood heroes. Your triumphs fanned the flames of my love of science, helping raise it from the bare embers of a childhood interest into a lifelong passion. Your successes comforted me when things seemed hopeless, helping to reassure me that even the seemingly impossible was often within reach.

Today, I am a graduate student in Nova Southeastern University's M.S. Counseling program and working towards board certification as a behavior analyst. My dream is to go into psychological research and to help raise the standards of the discipline to the point where psychology and the other "soft" sciences can be legitimately compared to the "hard" sciences in terms of methodological rigor... and to come, bit by bit, closer to the countless truths I seek. This is not to say, however, that I do not face substantial challenges in reaching my goal.

The worst of these challenges are prejudice and fear. You see, I have a disability. One of my professors flat-out told me (in writing, no less) that having it was unprofessional... in a course where a third of the course grade was participation and professionalism. My clinical ethics textbook states that I am not human. Fear-driven efforts to create a world without people like me in it have already claimed countless lives throughout the world, including at least ten innocent babies in California... this year alone. There's even a clinic within easy driving distance of my house dedicated to chemically castrating people like me.

My disability is most commonly called "autism".

This is why it hurt me so incredibly much to hear that you, one of my childhood heroes, has been raising money for a fear-mongering antivaccine group dedicated to the goals I mention above. I can only hope that you did this out of ignorance; the thought of you having done so knowingly just hurts far too much.

As you may or may not know, the proceeds from Communication Shutout Day go to the program's "global partners". In America (outside Colorado), this means Giant Steps, the Hollyrod Foundation, and the National Autism Association. It's this last which is the most concerning.

The National Autism Association is an anti-vaccine group dedicated to promoting untested, unproven, and often dangerous "treatments" for autism. They praise intravenous chelation (which risks death and brain damage, and, more importantly, involves pumping an irritant into a child's veins for at least two hours at a time). Their 2009 conference, which was held within walking distance of my house, featured a keynote presentation by Andrew Wakefield (whose unethical conduct and Mengele-like "experiments" were largely responsible for major measles outbreaks throughout Europe), a presentation blaming my neurology on MSG in vaccines, and a presentation on why my neurology should be considered a disease (among countless other things). One of their past conferences even involved a keynote from an infamous quack who makes his living chemically castrating autistic children (and who is responsible for the clinic near my home). They recently were involved in a concentrated effort to effect legislation here in Florida which would have effectively banned the flu vaccine. I am perfectly willing to provide references and further information on any of these assertions on request.

Mr. Aldrin, you are old enough to remember many of the diseases which vaccines prevent. For instance, with polio alone... the iron lungs, the countless children who were crippled for life... to groups such as the NAA, bringing back these things is worth it if it means not having people like me or my friends around. You should also remember Jonas Salk and his heroic dedication to the welfare of the children of the world. To groups such as the NAA, Jonas Salk and countless others like him are villains. I find it difficult to express the sheer perversity of this.

I will admit that the NAA has also campaigned against the more "classic" abuse of children with disabilities in the forms of seclusion and restraint. This, however, mainly serves to help legitimatize them and to help them lend support to other, wackier anti-vaccine organizations such as Generation Rescue, SafeMinds, and the National Vaccine Information Center. In a recent conference presentation on the NAA, I referred to them as a "gateway organization" because of their function in such groups' recruitment tactics.

I won't pretend that this is the only thing wrong with Communication Shutout Day. I strongly encourage you to read what Ari Ne'eman of the Autistic Self-Advocacy Network has written about the matter ( http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=122 ) and to peruse the various online writings relating to Autistics Speaking Day and the reasons for it.

In the meantime, however, I have to go to bed tonight knowing that one of my childhood heroes has chosen to raise funds for a group whose dedication to creating a world without people like me in it is so strong that they are perfectly willing to sacrifice the lives of countless innocents to create it.

Sincerely,

Alexander Cheezem

Still More on Vaccination

I just got vaccinated yet again -- this time the vaccine even contained mercury!

I'm now heavily perseverating. Oh, wait. That's normal. Nope, still not feeling any more autistic.

Another Comment on Vaccination

I got vaccinated today -- against three different illnesses. I still don't feel any more autistic.

My arm is a bit sore, though.

On the Autism Health and Wellness Expo, Part One

Perhaps it is unsurprising that the quacks came out in force for an event entitled the "Autism Health and Wellness Expo". On the other hand, it says something that Mark and David Geier were not the biggest quacks there.

And yes, they were there. I listened to one of their talks and wound up meeting the father in their father/son castration team. It was an... interesting experience.

The Geiers' talk involved some truly spectacular fearmongering. Among other things, they claimed that they believe that autism's prevalence was at one in 20 to 30 during the "peak years" (whatever that means). They claimed that most autistics have mitochondrial dysfunction of some kind or another. They engaged in some truly insipid anti-vaccine fearmongering.

They also defined aggression as including meltdowns and frustration.

To Dr. Geier's credit, however, he did (in a subsequent discussion) criticize DAN! -- basically for being frauds, although he also called them pawns of Big Pharma. He acknowledged that hyperbaric oxygen "therapy" for autism is bunk (at least how they practice it). He gave me some rather interesting information regarding vitamin manufacturers. He stopped just short of actively calling Bradstreet a quack (and did strongly imply this). He repeatedly emphasized the need for using a reputable lab to conduct legitimate tests (of course, if you don't interpret them correctly...).

The Geiers' science was every bit as bad as I'd been expecting. There are major parts of their presentation that I really wish I could still remember -- such as the details of how they concluded that autism is really mercury poisoning (it was shoddy logic based on urinary porphyrin testing, but I don't remember several key details).

They were also pretty blatantly recruiting for CoMeD, even going so far as to hand out pamphlets. The less said about this, the better.

Until today, I wondered how a parent could ever fall for their quackery. I no longer wonder. The Geiers are a truly polished act, con artists extraordinaire. Some of the tactics they used... the liberal use of the foot-in-the-door phenomenon... the polished presentation of their pseudoscience (it was often extremely difficult to detect this without extensive knowledge of the topics -- and studies -- they were talking about)... the polished use of "reasonable" stances towards various groups (no one was perfect in his eyes, everyone had flaws and strengths)...

It scares me. It really does. I'll have to write more later, but keep in mind that they weren't the quackiest people to speak at that expo. The honor of "biggest quack" goes to Dr. Phil Bate. More on him later.

A Quick Note On The H1N1 Shot

I just got my H1N1 shot. I don't feel any more autistic.

That is all.

Some Recent Advocacy Efforts

Fellow bloggers Kim Wombles, Thelma, and Louise have started an effort to form a new autism organization, one which actually looks pretty good... if still young. I hold out great hopes for their efforts.

Edit: I somehow managed to miss Kathleen's involvement with the project. She deserves a mention as well. Again -- good luck!

At the same time, the anti-disease group PKIDs has released a pretty spectacular set of videos on the horrific costs that the decision not to vaccinate can impose on families. Sullivan of LBRB has blogged on them here, complete with embedded video.

In his post, however, Sullivan wrote the following:

For any who wish to comment that this has nothing to do with autism, I agree. Unfortunately, the autism community is one of the biggest sources of misinformation about vaccines and vaccine preventable diseases. If I can help PKIDs a bit with this post, I see that as a good thing.

I have to somewhat disagree. Ideally, he is right -- this shouldn't have anything to do with autism. His comment that the autism community is one of the biggest sources of misinformation about vaccines and vaccine preventable illnesses, however, hits the nail on the head.

The instant vaccines entered the autism discussion, the two became connected. Despite the fact that the connection is purely artificial, a product of quackery and delusion, it is very real... and very horrifying.

Watch those videos. I'm particularly fond of the Hib, Hepatitis, and pneumococcal disease videos, but the others are generally pretty good as well.

This is what groups like DAN and Generation Rescue are telling people to risk rather than accept a percieved risk of having their kids turn out like us. This is what they are telling people is better than autism when they advise parents not to vaccinate their children.

Frankly, I find that phenominally insulting.

Edit: Corrected a typo ("However" was missing an e).

A Recent E-mail

The following is from a recent e-mail sent in response to an accusation that I lacked empathy after my attempts to explain that anti-autism hate speech is offensive to several curebie parents. I've modified it somewhat (taking out an introductory dependant clause in the first paragraph and removing a parenthetical reference to another list-member) to better fit the format of this blog and to respect the privacy of the individuals involved, respectively.

It's not so much that I'm oblivious to the idea that my words may cause pain as that I view that pain as unavoidable. "Autism" is a description of a set of neurological and psychological differences -- differences in the way our brains work when compared to yours. Setting aside the question of whether or not those differences are deficit-driven and/or pathological, how exactly do you think it makes us feel when our parents say that they hate the way we think and view the world? That is what autism is.

"Love the child, hate the autism" is impossible. You cannot separate the way someone's brain works -- the way they think, the way the feel, the way they remember things, the way they view the world, all of which are described by the reification we call autism -- from who they are.

What's more, children grow up... and an autistic twenty-five-year-old is a very, very different creature from an autistic five-year-old. When your children grow up and view these conversations, how do you think they'll feel, given what I described above? Leaving aside the question of whether or not vaccines "cause autism", how do you think that your children will feel when they see you advising people to risk their child dying rather than growing up to be like them? Is that not saying that a life like theirs is worse than death? How do you think any child would feel, growing up to read their mother's public and published accounts of how raising them was a "nightmare"? We've lived through that.

This, not merely the quackery (although that is awful), is the worst aspect of the whole DAN-and-Generation Rescue phenomenon... and I sincerely doubt that anyone on this list wants their child to go through this sort of pain.

I am painfully aware of what this sort of thing does to a person. I have had the unfortunate experience of seeing people go through this. It is not pleasant. This is a major understatement.

So -- when given the choice of trying to prevent this, and causing pain to parents as they mourn the loss of a "normal" child who was never born, or staying quiet and watching as countless children grow up to experience the same unspeakable heartache that countless friends of ours have lived through... what would you do? When confronted with the memory of someone's tear-filled face as they ask why their (loving, but misguided) parents hate them, what would you do?

(For the record, the last question above is the result of my attempt to translate some of my own experiences into neurotypical terms. Distraught expressions play a role in neurotypical cognition that they do not in most autistics' emotional processes. I've never physically been there when asked that question... but that doesn't matter to me; the emotions would have been exactly the same.)

Scary, scary figures

I recently came across this piece by the LA Times. Frankly, I'm scared. Epidemiology may not be my field, but this is far, far worse than I'd imagined.

The mathematics of mass vaccination are complicated, and the level of vaccination required to achieve herd immunity varies between illnesses (or even strains of the same illness), but I can't think of any illness where a vaccination rate of 13.5% is enough to provide such an effect. That is, admittedly, the most extreme example on the list, but I could say the same of a vaccination rate of 50%, which is much more common. Generally speaking, a vaccination rate of anywhere from 85% to 95% is required for herd immunity to provide any real protection.

They might have well posted this data as an article, and labelled it, "California kindergatens are fertile breeding grounds for some of the nastiest diseases circulating in the world today!"

I'm beginning to suspect that it'll take a genuine tragedy to stop Jenny and her brand of idiots. In the meantime, her kill count keeps rising... and, for every additional unvaccinated child, the scope of the inevitable tragedy, when it comes, grows.

As I said, I'm pretty thoroughly scared by this.