Autism quackery: Try, try, try, and never give up [Respectful Insolence]

Sadly, this is not unlike how autism biomed parents think about autism quackery.

Antivaccine quackery is arguably one of the worst forms of quackery. First, the pseudoscientific beliefs undergirding such quackery are based on the fear and demonization of one of the greatest medical advances in the history of the human race, the result of which are children left unprotected against preventable diseases that routinely used to populate cemeteries with little bodies. Almost as bad, one of those beliefs, namely the scientifically discredited belief that vaccines cause autism, has led to a cottage industry of quack “treatments” based on the idea that autism is a manifestation of “vaccine injury.” Thus, the most vulnerable of children, children with neurodevelopmental disorders, are routinely subjected to treatments that range from useless to dangerous treatments like chelation therapy (which can kill), stem cells of dubious provenance sold by Central American clinics and injected into children’s spinal columns, and—I kid you not—bleach enemas. These “treatments” are promoted at antivaccine quackfests like Autism One in a culture that’s coalesced around the belief that autism is treatable and parents can “recover” their “true” child from the demon autism and that vaccines are a major cause of autism. It is a culture that promotes belief and discourage questioning, such that leaving it is akin to apostasy.

A key claim frequently made by the practitioners of these alternative medicine treatments is that they are “individualized” to the parents child. Of course, such claims often disintegrate under the lightest of scrutiny. For instance children who get Miracle Mineral Solution (a.k.a. MMS, a.k.a. bleach) get pretty much the same regimen, and, if you believe Kerri Rivera (the most infamous practitioner promoting MMS as a treatment for autism) every child should get it. Indeed, if you look at many of these quack treatments, they all proceed from a similar idea that vaccines somehow injured the child and the child must be somehow “detoxified” to reverse that injury.

Be that as it may, when you combined a culture in which parents are encouraged never to give up in trying to “recover” their child with a cornucopia of quack treatments that are in essence practitioners making it up as they go along, bad things happen. Unfortunately, it’s the autistic child to whom they tend to happen. This is what I was thinking when I saw a new post on the blog of the inappropriately named Thinking Moms’ revolution entitled Why I Try “So Many” Protocols in Treating My Son with Autism. Basically, it’s a justification of the neverending search for cures described by Jim Laidler. First, read this passage from an article about him:

For several years, on the advice of doctors and parents, the Laidlers treated their children with a wide range of alternative medicine techniques designed to stem or even reverse autistic symptoms. They gave their boys regular supplements of vitamin B12, magnesium, and dimethylglycine. They kept David’s diet free of gluten and casein, heeding the advice of experts who warned that even the smallest bit of gluten would cause severe regression. They administered intravenous infusions of secretin, said to have astonishing therapeutic effects for a high percentage of autistic children.

Using substances known as chelating agents, the Laidlers also worked to rid Ben and David of heavy metals thought to be accumulated through vaccines and environmental pollutants.

Now, look at the TMR article by JuicyFruit:

I refuse to look back in a decade and say “I really wish I had tried that when I first heard about it” or “I really wish I had pushed through that wall of herxing and gotten to the other side.” That is why we have tried so many protocols (and we’ve given them all true trial unless they caused our son to regress) and why I continue to go to conferences to hear new ideas and try new things. This is why I read medical literature over my lunch hour and why I bring new treatment ideas to my naturopath.

How many times have we seen such behavior before: Never give up. Never question. Always keep searching. And, above all, never accept your autistic child for who he is.

Oh, and don’t worry about anything resembling plausible biological mechanisms or even if everything you’re trying is based on the medical equivalent Mad Libs: Throw together different terms and hope they sound good. It matters not at all if the resulting story has any relationship to actual science or medicine. We get a flavor of this idea from JuicyFruit’s post. But first we get an extreme version of “personalization.” Basically, there is no cause of autism because pretty much everything causes autism. It’s different for every child! Thus, no treatment works for every child! Here’s what I mean:

If there is one truth about autism, it is that nothing works for every child with autism. There is no roadmap that says if you do X, your child will do Y. There is no clearly laid out order which all medical professionals agree is appropriate for all children with autism – because there is no one cause of autism. There is no one genetic mutation, and there is no one environmental trigger that cause autism. There are MANY causes.

Now here’s the difference between actual “individualization” of treatments as practiced by science-based doctors and “individualization” practiced by quacks. Generally, there will be an understanding of a mechanism or a small number of related mechanisms, and therefore the number of potential treatments to choose from will be similarly constrained. More importantly, there will be a framework to identify which patients should receive which treatments, an algorithm if you will, as in, if test X shows Y, then try treatment Z first. There will also be concrete, generally agreed upon measures to determine if the treatment is working. Simple examples include a decrease in the size of a tumor when treating cancer or a decrease in blood pressure in response to antihypertensive medications. There will also be clinical trial evidence, often evidence from randomized clinical trials, to support the treatment. Yes, there will be variability, and treatments might not work, necessitating trying something else, but there will be limits and evidence-based guidelines overseeing the process. The description above has no guidelines. Basically, because each child is a unique special snowflake, there will only be one treatment or combination of treatments that will work and it won’t work the same for any other child.

Of course, what I usually say is that a condition for which there are many, many treatments is almost always a condition for which none of those many, many treatments actually works very well.

And here’s the consequences of the idea that every case is different and there are many, many causes of autism:

In my son’s case we know now that, genetically, he has a compound heterozygous MTHFR mutation with multiple other mutations that impair his ability to detoxify. I had amalgams. I had antibiotics while pregnant. I am sure I ate tons of GMOs while pregnant because it wasn’t even on my radar to avoid them. I do not have natural immunity to measles, mumps, or rubella because my generation is the first to be vaccinated for them. (my personal theory is that the vaccines I got as a child have a role in the way I passed down immune function to my son). My son regressed after a virus shortly after his third birthday. Not after a vaccine – we had started them after he turned two and did one at a time. It was an influenza virus that caused his regression.

Sigh. I really do have to do an in-depth post about MTHFR mutations one of these days, because they seem to be the new mitochondrial disorder in the autism world. Remember several years ago, when the Hannah Poling case led every autism quack to declare that autism was due to mitochondrial disorders (in combination with other problems, of course)? MTHFR is a lot like that now, and there’s no way that a naturopath has clue one what these tests mean.

But notice all the other “causes” of autism. There are mercury amalgams. There were antibiotics while pregnant. There were GMOs (of course!) and, of course, vaccines. Seriously, so powerfully evil are vaccines in JuicyFruit’s mind that her having received them as a child instead of getting the actual diseases themselves to achieve “natural immunity” gave her son autism. Now here’s the funny thing. JuicyFruit admits that her son didn’t regress after vaccines, but she’s still convinced that vaccines were a major cause of her son’s autism. How? She invokes the magical view of epigenetics that so many believers in alt-med have:

I’m starting to see parents who have one child on the spectrum already, who knew not to vaccinate further children, wondering why those unvaccinated, 100% GMO-free, breastfed siblings are seeming to regress after being ill, and I cringe because I worry that the answer lies in Mom’s health. In Mom’s childhood vaccines. That those pieces created an in-utero environment that shifted our children’s epigenetics. I worry that we’re de-evolving as a species.

That’s right. Those vacines and GMOs are so powerful that they make your children autistic through epigenetics. I say to JuicyFruit what I say to every quack who invokes epigenetics: Epigenetics. You keep using that word. I do not think it means what you think it means.

In fact, vaccines are so bad that JuicyFruit foresees them causing the utter destruction of America. No, I’m not exaggerating, she really predicts that:

I can see a future – led by California – of forced vaccines for all children (unless they have a medical waiver) and all adults. I see a huge rise in kindergartners and seventh graders suddenly regressing into nonverbal, head-banging, feces-smearing vaccine injury because of the total load of shots they are required to have. (It would be interesting to see how the media handles that . . . I am guessing it would be completely ignored.) I see a huge rise in Parkinson’s and Alzheimer’s disease in formerly healthy adults because of the sudden need to be caught up on vaccines which contain aluminum and formaldehyde.

I see a future where we don’t have enough healthy adults to run this country – where half the population lives in a care facility and doesn’t work. Where we have no military because there is no one left healthy enough to be in it.

So, even though her child didn’t regress after vaccines, but rather after getting a vaccine-preventable disease (influenza), JuicyFruit not only still blames the vaccines she got but thinks that vaccines are so harmful that they will render so much of the population severely autistic due to childhood vaccines and result in so much of the senior citizen population having Alzheimer’s and Parkinson’s diseases that they can’t care for themselves that the US won’t even be able to maintain a military.

Now that‘s some serious fear mongering. To prevent that possibility, this not-so-Thinking Mom “thinks” that she has to try and publicize every autism quackery under the sun.

from ScienceBlogs http://ift.tt/1MGxyOe

Sadly, this is not unlike how autism biomed parents think about autism quackery.

Antivaccine quackery is arguably one of the worst forms of quackery. First, the pseudoscientific beliefs undergirding such quackery are based on the fear and demonization of one of the greatest medical advances in the history of the human race, the result of which are children left unprotected against preventable diseases that routinely used to populate cemeteries with little bodies. Almost as bad, one of those beliefs, namely the scientifically discredited belief that vaccines cause autism, has led to a cottage industry of quack “treatments” based on the idea that autism is a manifestation of “vaccine injury.” Thus, the most vulnerable of children, children with neurodevelopmental disorders, are routinely subjected to treatments that range from useless to dangerous treatments like chelation therapy (which can kill), stem cells of dubious provenance sold by Central American clinics and injected into children’s spinal columns, and—I kid you not—bleach enemas. These “treatments” are promoted at antivaccine quackfests like Autism One in a culture that’s coalesced around the belief that autism is treatable and parents can “recover” their “true” child from the demon autism and that vaccines are a major cause of autism. It is a culture that promotes belief and discourage questioning, such that leaving it is akin to apostasy.

A key claim frequently made by the practitioners of these alternative medicine treatments is that they are “individualized” to the parents child. Of course, such claims often disintegrate under the lightest of scrutiny. For instance children who get Miracle Mineral Solution (a.k.a. MMS, a.k.a. bleach) get pretty much the same regimen, and, if you believe Kerri Rivera (the most infamous practitioner promoting MMS as a treatment for autism) every child should get it. Indeed, if you look at many of these quack treatments, they all proceed from a similar idea that vaccines somehow injured the child and the child must be somehow “detoxified” to reverse that injury.

Be that as it may, when you combined a culture in which parents are encouraged never to give up in trying to “recover” their child with a cornucopia of quack treatments that are in essence practitioners making it up as they go along, bad things happen. Unfortunately, it’s the autistic child to whom they tend to happen. This is what I was thinking when I saw a new post on the blog of the inappropriately named Thinking Moms’ revolution entitled Why I Try “So Many” Protocols in Treating My Son with Autism. Basically, it’s a justification of the neverending search for cures described by Jim Laidler. First, read this passage from an article about him:

For several years, on the advice of doctors and parents, the Laidlers treated their children with a wide range of alternative medicine techniques designed to stem or even reverse autistic symptoms. They gave their boys regular supplements of vitamin B12, magnesium, and dimethylglycine. They kept David’s diet free of gluten and casein, heeding the advice of experts who warned that even the smallest bit of gluten would cause severe regression. They administered intravenous infusions of secretin, said to have astonishing therapeutic effects for a high percentage of autistic children.

Using substances known as chelating agents, the Laidlers also worked to rid Ben and David of heavy metals thought to be accumulated through vaccines and environmental pollutants.

Now, look at the TMR article by JuicyFruit:

I refuse to look back in a decade and say “I really wish I had tried that when I first heard about it” or “I really wish I had pushed through that wall of herxing and gotten to the other side.” That is why we have tried so many protocols (and we’ve given them all true trial unless they caused our son to regress) and why I continue to go to conferences to hear new ideas and try new things. This is why I read medical literature over my lunch hour and why I bring new treatment ideas to my naturopath.

How many times have we seen such behavior before: Never give up. Never question. Always keep searching. And, above all, never accept your autistic child for who he is.

Oh, and don’t worry about anything resembling plausible biological mechanisms or even if everything you’re trying is based on the medical equivalent Mad Libs: Throw together different terms and hope they sound good. It matters not at all if the resulting story has any relationship to actual science or medicine. We get a flavor of this idea from JuicyFruit’s post. But first we get an extreme version of “personalization.” Basically, there is no cause of autism because pretty much everything causes autism. It’s different for every child! Thus, no treatment works for every child! Here’s what I mean:

If there is one truth about autism, it is that nothing works for every child with autism. There is no roadmap that says if you do X, your child will do Y. There is no clearly laid out order which all medical professionals agree is appropriate for all children with autism – because there is no one cause of autism. There is no one genetic mutation, and there is no one environmental trigger that cause autism. There are MANY causes.

Now here’s the difference between actual “individualization” of treatments as practiced by science-based doctors and “individualization” practiced by quacks. Generally, there will be an understanding of a mechanism or a small number of related mechanisms, and therefore the number of potential treatments to choose from will be similarly constrained. More importantly, there will be a framework to identify which patients should receive which treatments, an algorithm if you will, as in, if test X shows Y, then try treatment Z first. There will also be concrete, generally agreed upon measures to determine if the treatment is working. Simple examples include a decrease in the size of a tumor when treating cancer or a decrease in blood pressure in response to antihypertensive medications. There will also be clinical trial evidence, often evidence from randomized clinical trials, to support the treatment. Yes, there will be variability, and treatments might not work, necessitating trying something else, but there will be limits and evidence-based guidelines overseeing the process. The description above has no guidelines. Basically, because each child is a unique special snowflake, there will only be one treatment or combination of treatments that will work and it won’t work the same for any other child.

Of course, what I usually say is that a condition for which there are many, many treatments is almost always a condition for which none of those many, many treatments actually works very well.

And here’s the consequences of the idea that every case is different and there are many, many causes of autism:

In my son’s case we know now that, genetically, he has a compound heterozygous MTHFR mutation with multiple other mutations that impair his ability to detoxify. I had amalgams. I had antibiotics while pregnant. I am sure I ate tons of GMOs while pregnant because it wasn’t even on my radar to avoid them. I do not have natural immunity to measles, mumps, or rubella because my generation is the first to be vaccinated for them. (my personal theory is that the vaccines I got as a child have a role in the way I passed down immune function to my son). My son regressed after a virus shortly after his third birthday. Not after a vaccine – we had started them after he turned two and did one at a time. It was an influenza virus that caused his regression.

Sigh. I really do have to do an in-depth post about MTHFR mutations one of these days, because they seem to be the new mitochondrial disorder in the autism world. Remember several years ago, when the Hannah Poling case led every autism quack to declare that autism was due to mitochondrial disorders (in combination with other problems, of course)? MTHFR is a lot like that now, and there’s no way that a naturopath has clue one what these tests mean.

But notice all the other “causes” of autism. There are mercury amalgams. There were antibiotics while pregnant. There were GMOs (of course!) and, of course, vaccines. Seriously, so powerfully evil are vaccines in JuicyFruit’s mind that her having received them as a child instead of getting the actual diseases themselves to achieve “natural immunity” gave her son autism. Now here’s the funny thing. JuicyFruit admits that her son didn’t regress after vaccines, but she’s still convinced that vaccines were a major cause of her son’s autism. How? She invokes the magical view of epigenetics that so many believers in alt-med have:

I’m starting to see parents who have one child on the spectrum already, who knew not to vaccinate further children, wondering why those unvaccinated, 100% GMO-free, breastfed siblings are seeming to regress after being ill, and I cringe because I worry that the answer lies in Mom’s health. In Mom’s childhood vaccines. That those pieces created an in-utero environment that shifted our children’s epigenetics. I worry that we’re de-evolving as a species.

That’s right. Those vacines and GMOs are so powerful that they make your children autistic through epigenetics. I say to JuicyFruit what I say to every quack who invokes epigenetics: Epigenetics. You keep using that word. I do not think it means what you think it means.

In fact, vaccines are so bad that JuicyFruit foresees them causing the utter destruction of America. No, I’m not exaggerating, she really predicts that:

I can see a future – led by California – of forced vaccines for all children (unless they have a medical waiver) and all adults. I see a huge rise in kindergartners and seventh graders suddenly regressing into nonverbal, head-banging, feces-smearing vaccine injury because of the total load of shots they are required to have. (It would be interesting to see how the media handles that . . . I am guessing it would be completely ignored.) I see a huge rise in Parkinson’s and Alzheimer’s disease in formerly healthy adults because of the sudden need to be caught up on vaccines which contain aluminum and formaldehyde.

I see a future where we don’t have enough healthy adults to run this country – where half the population lives in a care facility and doesn’t work. Where we have no military because there is no one left healthy enough to be in it.

So, even though her child didn’t regress after vaccines, but rather after getting a vaccine-preventable disease (influenza), JuicyFruit not only still blames the vaccines she got but thinks that vaccines are so harmful that they will render so much of the population severely autistic due to childhood vaccines and result in so much of the senior citizen population having Alzheimer’s and Parkinson’s diseases that they can’t care for themselves that the US won’t even be able to maintain a military.

Now that‘s some serious fear mongering. To prevent that possibility, this not-so-Thinking Mom “thinks” that she has to try and publicize every autism quackery under the sun.

from ScienceBlogs http://ift.tt/1MGxyOe