The price of anti-vaccine fanaticism, part 3

Rather, it is the harm that results from the promotion of "biomedical treatments" (a.k.a. quackery) to try to "cure" autistic children.

Even worse, I think it's fair to say that their actions directly result in imparting their readers with a deep and contemptuous mistrust of the medical community and science in general?

And they think Big Pharma is only in it for the money ... that list is astounding. And the harm they do to their own children is only part of the problem, they like to convince others to follow their "educated" advice.

Just today the local anti-vaxers had a sticky posted on the forums to provide "information" to other parents. That included a long list of websites for research - and a few token sites like CDC and AAP are listed for "balance". The vast majority of the list is a veritable quackfest, topped off by having whale listed. I shudder to think about the parents that happen onto whale looking for valid information. Of course, they have a little disclaimer about how they aren't giving medical advice so they aren't responsible in small print at the top. Yeah, right, the whole thing is medical advice.

It's a shame they inflict this upon their own children. It's an outrage that they inflict it upon other people's children. And now, the leader of the pack wants volunteers to help hand out pamphlets on the H1N1 vaccine. I'm thinking about volunteering so I can substitute in some real information.

Contrast Mary's statement with Jenny McCarthy's frequent mantra about her son Evan, "Evan is my science."

How can Kent Heckenlively inject his little girl, take her blood and urine, year after year? How can JM regard her little boy as a science experiment? How can they act as if their children were not even persons in their own right?

Because autism runs in families, that's why.

You might have left out colonics, I didn't see.
Dang it, I don't get being anti-vaccine and yet being pro... all of that stuff! Most of which is probably MORE DANGEROUS THAN A VACCINE!
A kid with autism needs support, one on one help. Society support would be nice. Not poisons. Nicotine patches? Nicotine is a poison! What are they thinking?
Then Autism Speaks has the NERVE to post that ridiculous video, going on and on about how autism drains the bank account without thinking, "hmm, perhaps it's because of the so-called treatments and protocols WE support?"
AUGH! It's just too ridiculous for the mind to comprehend.

I'm waiting for all the anti-vax trolls to read about Saul's treatment regimen and then comment: "Oh Noes!!! Too much, too soon!!!!"

It's gonna be a long long wait.

Jeez, when do you have the time to actually parent after administering all those treatments?
"Hey Johnny, guess what I got you for your 6th birthday? A coffee-enema!"
Yeah?

My concern is also about the other children that are part of these families. One anti-vaxx blogger calls herself an "autism mom" and has a picture of only one of her two sons featured on her website. When you spend all day and night focusing on implausible causes and useless treatments for autism, then it's quite possible that your other kids might feel neglected.

Wow, the comments over there are very revealing and disturbing.

I also note that the archives of at least one of the yahoo groups listed is public. It's possible to view the woo-meisters live and in action without even joining.

I'm trying to imagine inflicting all of that on either of my children with zero evidence that any of it would help. I was almost in tears before I started to scroll down the page and then I had to skip the rest of the list in order to hug my baby boy tightly.

I would be devastated if either child developed autism and I would spend a lot of time reading medical journals and studying every legitimate source on the subject. But why in the world would I want to give my child dangerous treatments that don't even make any sense?

I'm aghast. I had no idea that they were doing THIS MANY things to their kids. Seriously? SERIOUSLY?

I'm going to go hug my completely vaccinated children again.

These people are fanatics with a god complex. Those mainstream professionals who are educated and experienced enough to have a pretty good handle on what they _don't_ know, and admit it, are immediately written off by these people searching in desperation for heroes and magical cures. Wakers, Cutler, Buttar, and Amy exude confidence and hope for the magical cure. They are despicable people and these parents are completely out of control. And yes, some of them are abusing their kids.

I try to tell parents that experimental therapies should be limited to registered trials or some other peer-reviewed data gathering effort. That way everyone can learn whether the stuff really works or not. If it doesn't work or actually causes some problems, we can stop exposing kids to it. If it works, more doctors will use it for more kids. But if there's no systematic way of collecting data on *all* kids using the novel treatment, we'll spin our wheels for years, not really knowing how effective the therapy is. This potentially could hurt a lot of kids.

Sometimes I get parents to understand. But often there's a hyperfocus on their own kid. They can't make themselves care about what's good for kids in general. If they have to wait for some study to come out before using what might be a miracle cure, that's a lost opportunity. That scares them.

These insular Internet communities create a Bizarro world where the medical standard of care is something I don't recognize.

What's funny is the same people who will go on about how "where's the science to show it's safe" for vaccines have no qualms giving their kid things like N,N'-bis (2-mercaptoethyl)isophthalamide, which may very well be safe but certainly has not had near as much scientific testing as vaccines have.

Actually, it's not funny.

First of all, that list of treatment "Mary" used just scared me.

I am just curious, asides from the anti-fungal prescriptions, what Off-labeled prescription drugs are commonly used to "cure" autism?

Thanks.

I had no idea that they were doing THIS MANY things to their kids. Seriously? SERIOUSLY?

Yeah, the DAN! doctors believe autism has several causes:
- difficulty detoxifying mercury and other heavy metals
- leaky gut allowing antigens to be absorbed
- immune system prone to over-reaction causing allergies, asthma, and PANDAS
- immune system prone to under-reaction causing chronic candidiasis
- a brain sensitive to systemic inflammation
- nutritional deficiencies arising from the above

The DAN! doctors argue that there's a synergistic benefit of combining treatments that address all the above:
- gluten-free casein-free diet, due to the leaky gut
- long-term antifungals for the candidiasis
- anti-strep antibiotics for the PANDAS
- fish oil and more for the chronic low-level inflammatory state
- lots of vitamins and nutritional supplements
- chelation
- supplements to boost liver metabolism of metals, etc.

It's a complex, confusing mess based on semi-plausible speculation.

Adding to this pile is easy. Dream up some therapy and connect the dots back to inflammation or deficiency. The connection is enough. Never mind subjecting the new idea to some test that might prove it false.

I wonder if a Sokal hoax on the DAN! crowd would have any effect.

Alison,

Jenny McCarthy claims to have used prescription anti-fungals to rid Evan of yeast. Several of these are on Mary's list.

Many parents use antibiotics because they believe their kid has PANDAS or Lyme disease. Zithromax and IM Bicillin are on Mary's list.

IVIG is used to try to boost immune dysfunction. It is not recommended for treating autism.

http://www.ncbi.nlm.nih.gov/pubmed/17397768

Actos (pioglitazone) has a black box warning and is supposed to fight neuroinflammation, as far as I can understand.

http://www.ncbi.nlm.nih.gov/pubmed/17207275
http://leftbrainrightbrain.co.uk/?p=622

Galantamine is a drug for Alzheimer's

http://www.ncbi.nlm.nih.gov/pubmed/17069550

Saul has had all of these.

Paul Murray:

How can they act as if their children were not even persons in their own right?

Because autism runs in families, that's why.

Yes, autism runs in families, but if you think that autistic parents really act as if their children weren't persons, then you don't have a clue about what autism is like.

@titmouse

A Sokal hoax would probably just give them something else to add to their list. Even after it would be shown as a hoax, they'd just claim that there really is something to it and that the nay-sayers are just part of the conspiracy to keep their kid sick.

On the gluten-free/casein-free diet fixing a "leaky gut", I thought that having something like celiac disease led to not being able to absorb nutrients and the like through the intestinal walls, leading to malnutrition. So, wouldn't a gluten-free diet lead to more absorption of various things?

So, just for a little balance here, it's easy to just think of parent of kids with autism just a nuts or quacks but it's more productive to realize that they are desperate. Desperate people are often victims of quackery, in cancer or other diseases as well.

Please consider what many of these parents are dealing with. Competing experts in the field who all claim that their treatment is the best (floortime, ABA etc) and then charge five figures for a 6 or 8 week treatment session. The insurance doesn't cover these (research proven) therapies, because they don't cover "developmental delays". Oh and do you think that these doctors could charge these amount if they were negotiating with insurance companies instead of desperate parents?.

Go to your school district. Well the school's programs are slap dash "newest teaching methods" that don't require any medical research and are sometimes staffed by people with no education in the field. One school I knew had a teacher with secondary school music teaching degree and no experience with autism as the head of the preschool for ASD's . There are some good school programs, but there are also some really bad ones (This is not just for ASD, it's also education for children with other cognitive delays, hearing loss, speech impairments, etc) My son's Early Intervention program was staffed by people who did not even know to LOOK at a child when you talk to them. Boy is it hard to learn articulation from a person who mutters while looking in a different direction and scowls every time they talk to you.

Also remember that so many of these parents were blown off by their pediatricians (same mom as above doctor didn't recommend her son for further testing until he wasn't walking at age 2. He has ASD and CP.)

Now, I am mom to a child born with Cleft Lip and Palate. Normally you don't find parents of kids with clefts following quacks because they are one of medicine success stories. Between surgeons and therapist, kids with Cleft Lip and Palate have a good prognosis (if not an easy one) and treatment is negotiated and paid for by insurance companies. We still struggle with our school districts, but it is doable.

If you want parents of children with ASD to trust science you have to step up to the plate and offer them some better and more affordable solutions. What are you all DOING to support that? From a casual observer's point of view, it looks like you are mostly sitting on the sidelines making snarky comments.

That said (see comment above) I can entirely understand the frustration with the anti-vaxx folks. I was on a board for parent of kids with clefts (none with ASD) the other day when a very anti-H1n1 vaccine thread broke out. These are parents who are or should be VERY familiar with the medical profession considering the number of doctors we meet with. They seem so focused on distrusting this vaccine but so trusting of the other drugs and procedures administered during cleft treatment (surgeries, ear tubes, anesthesia, pain meds, IVs, etc) I was pretty dumbfounded. One problem is they always seemed imply that if you support vaccines you are sort of naive and uncaring of your children. So most of the members who are pro-vaccine just sort of stood back and waited for it to go away.

So, just for a little balance here, it's easy to just think of parent of kids with autism just a nuts or quacks but it's more productive to realize that they are desperate. Desperate people are often victims of quackery, in cancer or other diseases as well.

That would mean all parents of autistic children fall into that trap, which is most definitely untrue. Additionally, there are some parents who've been there, but got out after realizing it's hogwash.

While it's true that some success in the part of the medical model would go a long way in dealing with the issue, sometimes there's only so much science can achieve. Some problems are just too difficult to solve (like aging) so you better have other solutions, instead of just waiting for science to save the day.

Ultimately, it's a problem that has to do with people's worldviews, their understanding of science, their philosophies on disability, etc.

On the gluten-free/casein-free diet fixing a "leaky gut", I thought that having something like celiac disease led to not being able to absorb nutrients and the like through the intestinal walls, leading to malnutrition.

Celiac disease is something that is widely misunderstood, in large part because of the quacks pushing the GF/CF diet to sell books (gluten-free cookbooks are strong sellers because it really is a challenging diet to maintain), because they often don't understand it either.

Celiac disease is a genetic condition; people with it have receptors on some of the cells in their immune system that make them confuse some of the byproducts of gluten digestion with a chemical signal that orders an attack. They see this chemical, think it's the cue for an attack, and go ballistic on the intestines. How ballistic is variable; some people just get a bit quesy, and others develop an ileus. That's what happened to my cousin at age 6 months, when she first encountered oatmeal. She was hospitalized twice before doctors worked out the problem. (Complicating diagnosis was that she also developed a high fever, making them think she had an infectious disease.) Diagnosis requires a colonoscopy.

The gut doesn't get leaky; it gets scarred, and the structures that absorb nutrients (the cilia) die. Malnutrition will eventually result, though I think sometimes it's so bad that an entire piece of intestine dies, which would result in a literally leaky gut (followed fairly rapidly by acute peritonitis and probably death, if emergency surgery isn't performed).

The lucky ones are diagnosed early enough that they can simply avoid gluten. The unlucky ones get substantial damage to their guts first, and may require a bowel resection to remove the damaged part. It's not a pleasant condition to have.

It's also not a common condition, rarer than autism, and definitely genetic. It's a recessive trait, so it can run in a family for generations before anybody presents with it. Curiously, it is more common among Scandinavians. If there was a connection to autism, you'd think that Scandinavians would therefore have an increased autism rate.

@Calli Arcale

Thanks for the info on celiac. My father has it, but I had never really looked into the specifics of what it actually does. All I knew was my rather simplistic explanation above and that it is genetic. Here's hoping it passes me by.

Getting a diagnosis and then getting support services is a difficult job-been there, I know how bleak the world can look when your family and spouse blame you for not 'teaching that kid some dicipline' and doctors dismiss your concerns. Many of us here have been through this.

I know how the message boards can give you false hope. I heard about all these treatments Moms claimed were curing their kids. I looked at them through the eyes of a chemist and saw that they had no rational basis. I've worked on clinical trials for the Evil Pharma, and I know even Pfizer wouldn't sink this low. False hope is a waste of time, money and energy.

Bless all the great special ed teachers we have had. My child can function at school, and I hope will use her computer/drafting skills in job some day. The local message board ran me off, as I doubted too much of their revealed wisdom. They did give lots of useful tips on getting young kids to swallow pills-they have lots of experience with THAT.

--So, just for a little balance here, it's easy to just think of parent of kids with autism just a --nuts or quacks but it's more productive to realize that they are desperate. Desperate
--people are often victims of quackery, in cancer or other diseases as well.

-That would mean all parents of autistic children fall into that trap, which is most definitely -untrue. Additionally, there are some parents who've been there, but got out after realizing -it's hogwash.

No, I don't think it would mean all parents would fall into that trap. It would mean that there is a greater tendency.

-While it's true that some success in the part of the medical model would go a long way -in dealing with the issue, sometimes there's only so much science can achieve. Some --problems are just too difficult to solve (like aging) so you better have other solutions, --instead of just waiting for science to save the day.

Autism is not aging and I believe that science and medicine will find solutions far before they do solutions to all death ;) In fact there are many effective therapies (not cures, speech and physical therapies that can help some of the more disabling aspects of autism) right now, but the distribution methods of these therapies is seriously flawed. There is alot of room for improvement with the science we have today.

I'm not sure where "sitting around waiting for science to save the day" comes into it. You seemed very concerned about the quackery. I suggested some reasons that the quacks have people to feed on. It's often helpful to find causes when looking for a solution.

As an aside, I noted this nail in the coffin or MMR causing autism.

http://news.bbc.co.uk/2/hi/health/8268302.stm

"The NHS Information Centre found one in every hundred adults living in England has autism, which is identical to the rate in children.

The latest findings, based on nearly 7,500 adults, suggests that prevalence of autism spectrum disorder remains broadly level across all age bands.

My posts just sound more stilted and p*4%#ed off than I mean them. I just came across you blog and think it's very interesting. Don't mean to be a poor guest. Thanks for taking the time to report on the dangers of these unscientific procedures and the people who prey on anxious parents.

My posts just sound more stilted and p*4%#ed off than I mean them. I came across your blog and think it's very interesting. Don't mean to be a poor guest. Thanks for taking the time to report on the dangers of these unscientific procedures and the people who prey on anxious parents.

Sir Eccles

Good information but entirely wasted on most anti-vaxxers. They will not care how many studies show no link - they just know that something caused their kid's problem and vaccines are an easy target.

Jenny McCarthy exclaimed right on the teevee that her child was perfect as delivered and was subsequently tainted by vaccination. Trying to point out that genetics may be a far more advantageous line of study than vaccines would force her to admit that the poor kid was born with autism or the genetic makeup leading to it. That would mean that she contributed to this 'failure'. In her case its ego and stupidity which prevents her from moving on. Everyone in that deluded camp has an axe to grind. They don't care one whit about the rest of us and so go on sacrificing herd immunity to stupidity, fear and, in some cases, malice.

As an aside, I noted this nail in the coffin or MMR causing autism.

It's interesting that it's been taken and widely reported this way, i.e. something having to do with the MMR vaccine.

In reality, the implications of this finding are much more broad. First off, it's clear that many autistic adults exist in the community, most of them probably not even knowing they are autistic. It's not just children that have autism, as many would have you believe. The ideas that autistic adults don't exist, and mockery about a "hidden horde" were always out of place, but now it's easier to make that argument.

When it comes to science, it's also clear that all hypotheses relying on an "autism epidemic" are doomed to fail. Beyond vaccines, this would include plastics, trans fats, television, and all manner of other nonsense.

"The ideas that autistic adults don't exist, and mockery about a "hidden horde" were always out of place, but now it's easier to make that argument."

Oh please. The diagnostic criteria have broadened to the point that anyone who is a bit on the shy side or takes an intense fascination with something could be considered autistic now.

I took this online AQ test just for fun, and I scored a 45. Apparently, I am autistic! Who knew?

http://www.wired.com/wired/archive/9.12/aqtest.html

Oh please. The diagnostic criteria have broadened to the point that anyone who is a bit on the shy side or takes an intense fascination with something could be considered autistic now.

@Jen: That's not an accurate characterization. Also, do you have a point about the recent prevalence finding? Hard to tell.

I took this online AQ test just for fun, and I scored a 45. Apparently, I am autistic! Who knew?

The AQ test is a screening instrument. By definition, it can't tell you if you're autistic or not. (You would need a diagnostic instrument for that.)

The AQ test has been studied, is routinely used in research, and there are several papers you can look at. Mostly, it is useful to determine that you're not autistic. As I recall, if you score below 26, the odds that you're autistic approach zero.

About 20% of diagnosed autistics score below 32, so it does miss some autistics at that cut-off.

However, only about 2% to 3% of the general population score above 32. So it's useful in narrowing down potential candidates for a diagnosis.

In one university study, they interviewed 11 students who scored 32+. Of these, 7 met threshold DSM-IV criteria. Interestingly, none were actually diagnosed. The reasons were that parents were not present to confirm childhood behavior, and the students didn't report being unhappy with who they were (a debatable reason to preclude a diagnosis.)

Obviously, I can't say if you're autistic or not, but I can say you're either an outlier statistically, or someone who didn't do the test correctly.

< < IM Bicillin >>

I think this one about sums it up.

Doh! Sorry about that. Let me retry:

**IM Bicillin**

I think this one about sums it up.

i got the flu vaccination yesterday. my arm is barely sore. i expect i will be developing autism later today though.

So sorry rob. Maybe later you'd care to sign up for our in-home chelation therapy. Just have your credit information at the ready...

@MikeMa

Don't forget to push Lupron on him. Oh...and this lovely assortment of supplements.

Hey rob, that's nothing. I got a TDaP booster this morning!!!! (mainly for the pertussis boost). I am fearing the coming onslaught.

My niece started having what looked like seizures sometime after her vaccine at age 3. After many trips to the doctor (and tests) It was decided that they probably were not seizures but some delayed effect from her time in the orphanage (She was internationally adopted, came home at age 18months). Of course the whole "child hurt by institutional care and attachment issues" is a whole separate issue filled with their own set of quacks AND really good caring people too. The problem for those of us who are not medical or science people is that it can be hard to separate the two, especially in the mental health profession.

"Also, do you have a point about the recent prevalence finding? Hard to tell."

Joseph, have you actually read the study? I have. It's crap.

Joseph, have you actually read the study? I have. It's crap.

I did this morning actually. Elaborate.

As a person with OCD, the whole PANDAS thing makes me angry. While there is a lot to suggest that there is a rlationship between ASDs and OCSDs, they're nto the same thing. And if your kid had currently active PANDAS, they'd also have a throat culture positive for strep. Idiots. All you're doing is contributing to anitbiotic resistant bacteria.

Wait... the Big Pharma biz is to blame for Unsafe Vaccinesâ¢, but... they give their kids Lupron,Diflucan,Valtrex,Zithromax,
EDTA, Glutathione, IVIG, Nicotine transdermal, Oxytocin . ..
And a whole damn laundry list of other stuff ?
Where in blazes do they think this shit comes from, the Autism Fairy ? Do they really believe none of that stuff has harmful side effects ?

Where's Dara O'Brien and his sack ?

@Jen: Still here?

Jen wrote:

I took this online AQ test just for fun, and I scored a 45. Apparently, I am autistic! Who knew?

Jen - are you sure it was an AQ test and not an IQ test?

that list of Mary's frightens the hell out of me.

I've taken or currently take some of those meds for my various and sundry illnesses (all taken for 'on-label' use, thankyouverymuch) and the side effects are not pleasant.

A friend of mine has to undergo monthly IVIG for treatment of a severe and life threatening immune disorder (again, properly diagnosed legitimate disease, not some quackadelic thing). The treatment and side effects are awful.

We do these things because we feel we must, and because the science supports them. If the science did not support them, we would not do them - they're nasty!

I CANNOT for the life of me imagine putting a small child just through what my friend and I have to go through without solid scientific evidence, let alone that laundry list of unsubstantiated treatments.

that poor, poor child. Hard enough to explain stuff like that to a "normal" child (my friend had this illness starting at age four, was in remission from 6 to about 20) let alone to one who is autistic...

if those poor children ever 'outgrow' some of the worst of their autism, how will they cope with the afteraffects of all that pseudomedical abuse???

A thousand apologies, Joseph, for my failure to reply in a timely fashion.

"Elaborate"

The study was limited to self-responders. No effort was made to identify autistics living in institution-like settings. Yet, they were able to come up with a rate of 1 in 100 autistic adults? Wow! Imagine if they had added those lower functioning autistic adults who aren't able to fill out questionaires. Wouldn't that mean that autism rates in adults are actually much higher?

I could go on, but that is probably the biggest problem I have with this study. That, and the fact that this "study" is being touted in the UK press as "proof" that MMR is unrelated to autism. (Nevermind that 16 year olds were included, who would have likely received the MMR, since it was introduced in the UK in 1988.)

@Jen:

The study was limited to self-responders.

I think you're mistaken about this. What do you mean? Here's how they did the sampling:

The survey adopted a multi-stage stratified probability sampling design. The sampling frame was the small user Postcode Address File (PAF). The small user PAF consists of those Royal Mail delivery points which receive fewer than 50 items of mail each day.

Continuing...

No effort was made to identify autistics living in institution-like settings.

This was a study of the prevalence of autism amongh adults living in private households. They explicitly say that in the paper, and I don't see any problem with that at all.

Yet, they were able to come up with a rate of 1 in 100 autistic adults? Wow! Imagine if they had added those lower functioning autistic adults who aren't able to fill out questionaires. Wouldn't that mean that autism rates in adults are actually much higher?

It most likely does mean that. Note that a small percentage of all adults live in institutions for the developmentally disabled. My guess is that prevalence would increase to about 1.3%, which would not be too unusual for the UK.

Nevermind that 16 year olds were included, who would have likely received the MMR, since it was introduced in the UK in 1988

They performed an age analysis, summarized as follows:

However, when analysed by three broad bands of 20-30 years each, a slight downward trend with increasing age appeared to be evident but was not significant. Because no significant variation in rate by broad age group was evident, it was not deemed necessary to age standardise the subsequent tables in this report.

16-20 year olds are probably about 10% of the adult population. Obviously, they could not account for a prevalence of 1% on their own.

Your objections are weak, to be honest. Plus you have not identified the actual limitations of the study.

Michele in Michigan, you may want to look at sciencebasedmedicine.com, where a "friend" of Orac and other people blog. They provide detailed information for parents interested in evidence-based information on vaccines (and autism). Orac also has an extensive list of good autism bloggers in his blogroll.

I absolutely agree with you that quacks feed on despair, but that's true for many other diseases, most notably cancer, a subject that Orac specialises in, or infertility, something I have experience with. The mechanism is the same, and it is explored in great detail by Orac, Whitecoat Underground, and the folks at SBM.

The person posting the information about celiac disease needs to do a bit more research. It's a common genetic condition which is not determined by gene recessiveness or dominance. Bowel resection is not indicated for celiac disease, which destroys the villi of the small intestines. Crohn's disease, yes, but not celiac disease. As for leaky gut and celiac disease you might want to google zonulin, AT-1001, and celiac disease. Celiac disease is but one of the sub-categories of gluten intolerance, which can be just as destructive to the body as celiac disease. Gluten intolerance can result in damage to all body systems, but primarily only neurological effects have been the most tested and verified.