Respectful Insolence

There are times when I look back, and I can’t believe I’ve been at it this long. It’s not just the blogging, the fifth anniversary of which is rapidly approaching for me. Hard as it is to believe, not only have I become a “venerable” medical and skeptical blogger, but there are actually a lot of people who like to read what I regularly lay down. It’s not false humility when I say I’m still shocked when I contemplate that. However, when you add to the blogging my time on that Internet wilderness known as Usenet, I’ve been fighting the good fight against pseudoscience for close to 12 years now, possibly longer.

And nothing’s changed.

Then there’s the anti-vaccine movement which, as hard as it is to believe, I first encountered over five years ago as well and started blogging about nearly five years ago. I first discovered the anti-vaccine movement, first on Usenet, specifically on a Usenet newsgroup devoted to discussing alternative medicine (misc.health.alternative, or m.h.a. for short) and then later on web and on blogs, and ever since then there have been two things that have horrified me. First, there are the claims that children suffer all sorts of harm from vaccines, be it being made autistic (with the attendant “autism epidemic” caused by vaccines), suffering neurological damage, immune system damage, and all manner of other adverse consequences. There is no good evidence for these claims (although, as has been documented right here on this very blog time and time again, anti-vaccine activists will trot out all manner of awful studies to support their contentions), but that doesn’t keep useful celebrity idiots like Jenny McCarthy, Jim Carrey, Don Imus and his wife Deirdre, or Bill Maher from repeating the same myths over and over again. Worse, the permeation of society with these myths about vaccines has led to declining vaccination rates and the resurgence of potentially deadly vaccine-preventable diseases. It began first in the U.K. in the wake of Andrew Wakefield’s lawyer-funded, incompetent, and possibly fraudulent “research,” and has spread to the U.S., thanks to Jenny McCarthy and her ilk, who won’t take responsibility for their words and actions.

Even worse, the myth that vaccines cause autism has led to ideas. Dangerous ideas. No, they’re not dangerous simply because they “challenge” medical orthodoxy, although anti-vaccine activists like J.B. Handley would like you to think that’s the reason for the unrelenting hostility towards his anti-vaccine group Generation Rescue. These ideas are dangerous because they have direct consequences for children with autism. These consequences take the form of subjecting children to unscientific treatments that are ineffective at best and harmful at worst, sometimes even life-threatening. Indeed, I have written about the price autistic children pay for these delusions in which they are subjected to quackery such as injections of “stem cells” into their cerebrospinal fluid by lumbar puncture and various other “treatments,” as well as chemical castration in combination with chelation therapy. That latter bit of quackery is something I wrote about years ago, but that the mainstream press only just noticed earlier this year. Better late than never, I guess. Even better than that, though, the same reporting team at the Chicago Tribune that reported on Mark and David Geier’s advocacy of Lupron to treat autistic children back in May. Sadly, the result of that story does not appear to have been actions by the State of Maryland to take away Dr. Mark Geier’s medical license or to go after his son David for practicing without a license. Neither does it appear to have resulted in insurance companies going after them for prescribing an expensive drug for an indication for which it is not appropriate. What it does appear to have done, however, is to inspire the same journalist, Trine Tsouderos, and Patricia Callahan of the Chicago Tribune to pursue an even bigger target that Mark and David Geier, namely the entire “autism biomed movement,” which is for the most part rank quackery, in the following articles:

This is another rare case of excellent reporting on this issue, and I hope that this report (another installment of which was published early this morning after I had written this post) will grab the attention of more reporters and news outlets, leading to shining a light on the dark underbelly of the autism biomed movement.

The aspect of this report that I most like is that Ms. Tsouderos gets it. She understands what I and other critics have been saying all along, namely that the autism biomed movement is almost all pseudoscience and quackery and that much of it “amounts to uncontrolled experimentation on children.” This is a message that has been a hard sell, because most lay people (and, sadly, a lot of doctors) do not understand clinical trials, clinical trial ethics, and why the physicians and “healers” promoting these unsupported therapies are in essence doing uncontrolled, poorly done, and poorly monitored clinical research, whether they recognize that’s what they’re doing or not. The rules and laws built up over decades exist for a reason, to protect patients and human research subjects from harm and risk as much as is possible. Because of their emotional and ideological investment in such therapies, they throw out rules in such a way that they’d find utterly unacceptable if a mainstream scientist or even worse–gasp!–big pharma were to do. The story sets up this concept right from the beginning:

James Coman’s son has an unusual skill. The 7-year-old, his father says, can swallow six pills at once.

Diagnosed with autism as a toddler, the Chicago boy had been placed on an intense regimen of supplements and medications aimed at treating the disorder.

Besides taking many pills, the boy was injected with vitamin B12 and received intravenous infusions of a drug used to leach mercury and other metals from the body. He took megadoses of vitamin C, a hormone and a drug that suppresses testosterone.

This complex treatment regimen — documented in court records as part of a bitter custody battle between Coman, who opposes the therapies, and his wife — may sound unusual, but it isn’t.

Thousands of U.S. children undergo these therapies and many more at the urging of physicians who say they can successfully treat, or “recover,” children with autism, a disorder most physicians and scientists say they cannot yet explain or cure.

But after reviewing thousands of pages of court documents and scientific studies and interviewing top researchers in the field, the Tribune found that many of these treatments amount to uncontrolled experiments on vulnerable children.

Remember how many times Jenny McCarthy has said of her son, “Evan is my science”? Indeed, take a look at this transcript from an interview she did a couple of years ago (sadly, the original video no longer seems to be on the web):

You know, I could in two months turn Evan completely autistic again. I could do it completely through diet. And maybe getting some vaccine boosters. Through diet, I could load him up again with all the things that will aggravate the damage that was done. Right now, what happened now was that I healed him to the point where he got everything back to this baseline level and it stays there like this. But I mess with it at all–boom!

Combine McCarthy’s frequent invocation of the mantra that “Evan is my science” plus the attitude that if she were to stop doing everything combine to demonstrate that this is indeed “experimentation” with therapies, as documented by the Trib (and that have been documented here many other times), that are at best unproven and implausible and at worst ineffective and potentially dangerous:

The Tribune found children undergoing daylong infusions of a blood product that carries the risk of kidney failure and anaphylactic shock. Researchers in the field emphatically warn that the therapy should not be used to treat autism.

Children are repeatedly encased in pressurized oxygen chambers normally used after scuba diving accidents, at a cost of thousands of dollars. This unproven therapy is meant to reduce inflammation that experts say is little understood and may even be beneficial.

Children undergo rounds of chelation therapy to leach heavy metals from the body, though most toxicologists say the test commonly used to measure the metals is meaningless and the treatment potentially harmful.

Indeed. The justification for using chelation therapy to treat autism is two-fold. First, claim its adherents, children are either “mercury-toxic” or “heavy metal-toxic.” Originally, back in the days when Generation Rescue used to proclaim boldly, “”There is no such thing as autism. Autism is a misdiagnosis for mercury poisoning.” These days, even J.B. Handley has moved the goalposts and now attributes autism to a more vague “overload of heavy metals, live viruses, and bacteria,” due to “the tripling of vaccines given to children in the last 15 years (mercury, aluminum and live viruses); maternal toxic load and prenatal vaccines; heavy metals like mercury in our air, water, and food; and the overuse of antibiotics.” The second rationale is a dubious, unreliable, and unproven diagnostic test in which children are given chelating agents and then the levels of mercury and other metals are measured in urine samples. Surprise, surprise! These levels are virtually always elevated (mainly because that’s what chelation therapy does, binds metals and leads to their excretion in the urine, even in normal children. These “provoked urinary toxic metals tests” are virtually guaranteed to show “elevated” levels of various metals, particularly because often the “normal” ranges used for these tests are based children who have not recently had a chelating agent administered:

Nobody knows what normal results of this test would look like, toxicologists say. There is no accepted reference range. Nonetheless, the lab sends back color-coded charts that show alarming peaks of metals graphed against a meaningless reference range that was calculated for people who had never been given a chelator.

“That is exactly the wrong way to do it,” said Dr. Carl R. Baum, director of the Center for Children’s Environmental Toxicology at Yale- New Haven Children’s Hospital. “There is a whole industry that preys on people’s fears of heavy metal poisoning.”

Though most labs note that the reference range used is for unprovoked results, the apples-to-oranges comparison still can set off panic in parents.

Indeed. It’s inherently deceptive to do medical tests this way. Whether that deception is due to the incompetence of the “biomed” doctors doing them or outright dishonesty probably depends upon the specific practitioner. In any case, study after study has failed to find evidence that elevated mercury or heavy metal levels has any relationship to autism. Moreover, representatives of the labs doing such tests even admit that they’re not clinically validated. Their excuse for not working on clinical trials to validate them? About as lame as it gets:

Toxicologist William Shaw, lab director of The Great Plains Laboratory in Lenexa, Kan., said determining appropriate reference ranges for provoked tests will take more research but noted that it is difficult to get such studies approved by ethics boards and to get parents to enroll their children.

Both Shaw and Johnson of Defeat Autism Now! said the labs are identifying real problems, saying they have seen children benefit from chelation. Johnson also pointed to improved test results.

“Our only bedrock here is the observation by clinicians and parents that their children get better when they are given agents which are known to remove heavy metals from the body,” Johnson wrote in an e-mail.

Except that, as Prometheus has pointed out time and time again, autism is a disorder of developmental delay, not developmental stasis. Autistic children can and do “get better,” a significant fraction of them even so far as to lose their diagnosis and an even large fraction of them improving enough to be able to be productive members of society when they grow up. That’s why anecdotes about autistic children “recovering” after chelation therapy are inherently unreliable, not to mention that there’s no control group against which to compare. Indeed, in an accompanying sidebar, Ms. Tsouderos points out several things that need to be driven home again and again. Anecdotes are inherently unreliable, particularly in a condition that waxes and wanes as much as autism. She emphasizes, as did Prometheus, that 10-20% of children with autism may make so much progress that they become indistinguishable from their peers and “lose” their diagnosis.

Three other points stand out. First is the reaction of a luminary of the autism biomed movement to this story, specifically Dr. Martha Herbert. (We’ve met her before.) I’m rather amused at how she responded to e-mail exchanges about chelation therapy, after pointing out that she supports “biomed” treatments for autism:

In an earlier e-mail she wrote that she would sue the Tribune if she was portrayed as “an uncritical booster and fan of potentially dangerous unorthodox treatments.”

“I’m not defending chelation,” Herbert said in an interview. “I will sue you if you say that.”

That quote’s not going to endear poor Dr. Herbert to the biomed movement at all, I suspect. On the other hand, because she so desperately wants to be the “respectable” face of the autism biomed movement, Dr. Herbert does need to try to protect what’s left of her academic reputation, and supporting obvious quackery like chelation therapy for autism would not help her in that endeavor.

The second point was that it’s really, really easy to become a Defeat Autism Now! (DAN!)-certified biomed practitioner and to be listed as such. First off, you don’t even have to be a physician! You can be a nutritionist, naturopath or a homeopath, chiropractor, or nurse. Then all you have to do is to attend a 13-hour seminar held by the Autism Research Institute, sign a statement agreeing with the group’s philosophy regarding autism, and then pay $250 a year. After that, you, too, can push supplements, give chelation therapy, and promote whatever biomed woo you want to desperate parents!

Finally, it was interesting to see what happened to Dr. Roy Kelly, an ENT doctor turned DAN! doctor whose incompetence and quackery killed an autistic child back in 2005. Unfortunately, his license was only suspended for six months, with two and a half years probation. In my opinion, it should have been permanently revoked because he has proven himself to be practicing outside the standard of care in a way that killed a child. Amusingly, however, he registered as a DAN! doctor a year after having killed an autistic child and continued to be listed until, well, I’ll let the story tell:

Less than a year later, Kerry was added to the registry. In 2008 he voluntarily surrendered his medical license pending criminal charges of involuntary manslaughter in connection with the boy’s death, according to the Pennsylvania Board of Medicine.

Those charges were dropped, but in July of this year the state board suspended his license for six months, with 2 1/2 years of probation, state records show.

Kerry’s lawyer, Al Augustine of Chicago, said there was no proof chelation killed the child and that Kerry agreed to the suspension to avoid the cost and emotional hardship of contesting it.

Defeat Autism Now! continued to list the doctor until Nov. 5, a day after the Tribune inquired about his inclusion.

Johnson said the group had already planned to drop him this month because he had not filled out paperwork on his medical license.

Such are the standards for DAN! doctors. Even worse, that Dr. Kerry only had his license suspended for six months as a result of what looks to me like gross negligence demonstrates the utter ineffectiveness of our system for licensing and monitoring doctors. Another luminary of the autism biomed movement, Dr. Rashid Buttar, in addition to selling autism “biomed” in the form of “transdermal chelation therapy” (sometimes jokingly referred to as “Buttar’s butter”) and even apparently urine injection therapy, provided unproven cancer “cures” for years for many patients, charging huge sums for them. The North Carolina State Medical Board has tried unsuccessfully to strip Dr. Buttar of his medical license. Dr. Buttar is also, ironically enough, the doctor who’s been in the news lately for his role in allegedly “curing” Desiree Jennings of “vaccine-induced dystonia” using chelation therapy. In any case, it does look amusingly not coincidental that DAN! didn’t drop Dr. Kerry from its roles until reporters from the Trib started sniffing around. If only the Pennsylvania State Medical Board were less reluctant to discipline wayward physicians like Dr. Kerry, who should have been stripped of his license and banned from being in the same ZIP code of an autistic child, given the clean kill his incompetence, quackery, and negligence led to.

Not surprisingly, the autism biomed movement (or, as it is in my opinion, the autism quackery movement) wasted no time striking back. Indeed, within a couple of hours of the Trib story going live on its website, the anti-vaccine crank blog Age of Autism posted a notice to “Tell the Chicago Tribune They Are Wrong.” Instantly, the comments section of the Trib story was flooded with outraged boosters of “biomed” autism therapy. The dogmatism and pseudoscience on display are truly depressing to contemplate. But AoA wasn’t done. Yesterday, Kent Heckenlively, the AoA blogger who hit his daughter’s grandfather up for $15,000 to take his daughter to Costa Rica for dubious “stem cell” injections into her cerebrospinal fluid, next likened the Trib story to “playing the ‘telephone’ game,” complaining that the Trib didn’t take seriously the “studies” that he had referred Ms. Tsouderos to. Of course, real experts had told her the value of those studies, which is basically nil. I will give Mr. Heckenlively credit for melting my irony meter into a dripping, quivering pool of molten metal and rubber by saying that Ms. Tsouderos, “gives the appearance of thinking without actually engaging in the activity.” That statement, better than anything else, sums up the savvier members of the anti-vaccine movement. The less savvy members can’t even give the appearance of thinking, at least not of thinking critically and scientifically.

Alas, I fully expect that, given the viciously misogynistic reaction another female reporter named Amy Wallace provoked from J.B. Handley after she wrote a devastating broadside against the anti-vaccine movement, Ms. Tsouderos can expect something similar coming. Oh, perhaps it won’t be quite as blatant. J.B., for all his stubbornness and viciousness, is not stupid. He clearly knows he screwed up big time when he started cracking jokes about Paul Offit “date raping” Amy Wallace. On the other hand, J.B. just can’t help himself. After all, here is a man who thinks nothing of using the term “pussy” as an insult. He just can’t stop it for very long. It’ll be very interesting to see if he can control himself, or if he lets his true misogynistic freak flag fly high.

Regardless of how J.B. Handley decides to attack Ms. Tsouderos, autistic children have paid the price for the autism biomed movement’s promotion of quackery. They will continue to pay the price until somehow, some way, science-based medicine, rather than anecdote- and pseudoscience-based medicine can prevail. Autistic children deserve no less than the best scientific medicine that can be brought to bear on helping them to develop and alleviating their symptoms. They most certainly don’t deserve the unethical and uncontrolled experimentation to which far too many of them are being subjected.

Comments

  1. #1 Liz Ditz
    November 23, 2009

    The second installment of the series is up

    Autism treatment: Science hijacked to support alternative therapies, Researchers’ fears about misuse of their work come true

    http://www.chicagotribune.com/health/chi-autism-science-nov23,0,6519404,full.story

    clip

    Pardo’s study is just one example. In May, the Tribune reported on another questionable use of research. A geneticist and his son who promoted treating children who have autism with a testosterone inhibitor had based their protocol, in part, on the work of Simon Baron-Cohen, a psychopathologist at England’s University of Cambridge who has explored the role of the hormone in autism.

    Yet Baron-Cohen told the Tribune that the idea of using the drug this way “fills me with horror.”

    Pardo said that since his paper came out he has received many questions about unproven autism treatments. He is particularly haunted by inquiries regarding powerful immunosuppressant drugs usually used on organ transplant patients, calling the idea “completely wrong.”

    Said the researcher: “People are abusing science for the treatment of autism.”

    As I often do for stories of this type, I’m keeping a running list or index of pro- and con- blog posts. This one’s on the list.

    The list is here

    http://lizditz.typepad.com/i_speak_of_dreams/2009/11/the-unethical-treatments-that-autism-is-vaccine-injury-and-other-false-premises-gives-rise-to.html

  2. #2 special educator
    November 23, 2009

    Your lack of “people first” language is very unprofessional. When referring to people with autism or any disability for that matter, please name the person first and the disability second. For example, say “children with autism”, NOT “autistic children.”

    If you read professional journals or articles that deal with autism you should have already picked up on this. If you still don’t get it please read the wikipedia entry on people first language.

  3. #3 brian
    November 23, 2009

    The success of the biomed approach is shown by Dr Buttars successful treatment of Desiree Jennings…Thats why the mediocrities who populate medical boards are so upset: he shows that their medicine (vaccines here) is toxic, and that he can remove the toxins and heal the patient.
    not a way to get ahead in orthodox medicine, where only ass lickers succeed.

  4. #4 scrabcake
    November 23, 2009

    Whut?
    That’s a lame criticism. How about you address the content of the article, special educator? We don’t say “person with diabetes”, we say diabetic. And you don’t see too many diabetics sulking around nursing hurt feelings about it. They know they can’t help it and do the best they can.
    I’m usually all for political correctness, but I think that word ordering needs to be one of the lesser priorities for integrating special needs students back into society. How about we work to reduce the use of the term “retard”, which really is a slur? I think kids will probably be a lot happier if we don’t teach them that word ordering contains veiled insults that may or may not be intentionally there. This is just borrowing trouble, and it smacks of wasting time and energy on minutia as opposed to really doing something to help CHILDREN WITH AUTISM.

  5. #5 10,000li
    November 23, 2009

    child of red-head who is step

    child who is step with red hair

    child with red hair whose birth parent is married to a spouse who is not a birth parent of the child

    Naw, I’m just a red-headed stepchild.

  6. #6 scrabcake
    November 23, 2009

    Also, did you ever think that perhaps teaching kids that Autism is a bad thing by insisting that it be placed second, by insisting that it be deemphasized, and by having to pause to make sure what’s about to come out of your mouth is politically kosher might not work wonders for a kid’s self esteem?
    If you have a self-aware kid, it’s best to do anything you can to show them that their condition is NOT a stigma. To teach them that Autism and Autistic are somehow insults increases this sense of shame! People and children especially can tell if you are walking on eggshells around them, and might interpret that as being because you are ashamed or embarrassed.

  7. #7 green thumb
    November 23, 2009

    Gee special educator,

    You’re not following your own advice. You should be called educator with special. So deaf people are supposed to be referred to as people with deafness? Blind people are people with blindness? Every person with a disability which is everyone on the planet, some are just more noticeable than others have to use this “people first” language? Can we just draw a close on this political correctness bullshit? I mean political correctness with bullshit.

  8. #8 George D
    November 23, 2009

    I find it hard to blame some of these people.

    I was brought up in the environmental movement, and taught to believe that “there is no safe level” for many chemicals. I still believe this.

    Although I know that the potential harm caused by very small amounts of mercury is limited, especially compared to the very real harm of the diseases immunized for, I can see why those who do not have complete information about the relative risks may be cautious. And for these people, erring on the side of caution means not immunizing.

    I believe that this category of people is separate from the autism quacks. I believe that they are likely to be won over, if they can be isolated from the quacks. The simplest way of doing so is removing mercury and other toxic substances from all adjuvants. That isn’t entirely possible in every vaccine, but as much as possible it should be aimed for. The second thing to do is to treat them with respect – give them more information, and show the benefits. Treating these people like they’re stupid is counterproductive. So is acting in a way that makes them think that the people talking to are being arrogant. They want to feel that their concerns are being addressed, not simply waved away. It’s difficult to do this without giving the quacks undeserved recognition, but this group is already listening to the quacks, so they can’t be ignored entirely.

    They need to be immunized from the quacks. It’s possible.

  9. #9 Greg F.
    November 23, 2009

    @1 – special educator,

    When referring to people with autism or any disability for that matter, please name the person first and the disability second. For example, say “children with autism”, NOT “autistic children.”

    You’re joking, right? So since I have hay fever, I should be correcting those who ask if I’m allergic to pollen and demand they call me a person with hay fever in the following manner?

    Concerned Person: “I noticed you sneezing an awful lot lately. Are you allergic to dust and pollen?”

    Me: “How dare you be so condescending and unprofessional when talking to me about my condition?! I’m not ‘allergic.’ I’m a person with an allergy! Do you not read any literature on the matter at all?!”

    Concerned Person: “Err… I’m sorry I asked…”

    Political correctness only works as long as it’s sane. When it loses its touch with reality and turns into manipulating the language for feel good purposes, it becomes a joke.

  10. #10 KWombles
    November 23, 2009

    How does a person read this and walk away offended that Orac didn’t use the incredibly tedious person first language instead of offended that parents are engaging in that kind of behavior on their helpless children?

    I’m a parent of three autistic children. I could care less where the autism goes when referring to them, because, gosh, it doesn’t change their autism. It also doesn’t change how they’re treated. People first is a lovely idea; it just turns out that the language choice doesn’t prove that the people are put first. Guarantee you those parents put the child first in their language and look at what they subject their children to!

    As to the idea raised by George D. that all we have to do to win some of these folks over is to remove the blah, blah, it just goes to show you where he’s coming from. It wouldn’t win them over from the quacks. It would cement their position among the quacks. You (George) are using their talking points and their misinformation.

    Orac, you may feel like no progress has been made, but if you are holding it at bay, well, think if you and others like you were not standing and fighting the pseudoscience?

  11. #11 Andreas Johansson
    November 23, 2009

    Political correctness only works as long as it’s sane. When it loses its touch with reality and turns into manipulating the language for feel good purposes, it becomes a joke.

    Call me a cynic, but I doubt it’s for feel good purposes. Rather, I submit, the motive is shifting attention from issues to words.

  12. #12 mekei
    November 23, 2009

    When the pity mongers talk about the high divorce rate w/autism families, I believe it is more to do with the treatment issue and not the *stress* of raising the child. When the fathers don’t fall in line w/mom’s biomed crusade (sorry, but this seems to be the usual scenario), the dads either get on board or get out. The reasons are layered but money spent twd expensive quackery has to factor in marital disagreements at some point.

    Oh God, now watching GMA touting hash brownies as the an autism treatment for children. Medical marijuana run wild.

    I agree with the anti-people first language. After taking advocacy courses, I find this force-fed grammar lesson to be soooo off the point. Let it go. No one in the non-disabled community (oops, I mean, “individuals without disabilities”) discerns between the two.

  13. #13 Dave Ruddell
    November 23, 2009

    Is special educator a ‘troll of concern”?

  14. #14 sophia8
    November 23, 2009

    George D: You’re right that a lot of people have the false belief that “all chemicals are bad”. But you’re displaying the same wrong thinking with your request for”…. removing mercury and other toxic substances from all adjuvants”.
    Paracelsus said “The poison is in the dose” and you know what? He was right. Anything at all can be toxic, in large enough doses – people have been killed by drinking too much water, for example. Whereas, a number of chemicals that most people would consider deadly – for instance, formaldehyde – are actually manufactured by the body and essential to life.
    The anti-vax movement like to issue lists of “toxic substances” listed in vaccines. Some chemicals listed aren’t even in vaccines – others are, but in trace measurements that are so minute as to be homeopathic.
    You can find more information at this link: AntiAntiVax.

  15. #15 Dianne
    November 23, 2009

    As a probable Aspie, I’m less offended by the order of the description than by the Jenny McCarty/DAN “better dead than autistic” language.

  16. #16 Dedj
    November 23, 2009

    “Is special educator a ‘troll of concern”?”

    Possibly, nothing was added to the conversation by thier comments.

    In thier defence, person first language is the default in professional documents, purely because is deemed more acceptable.

    However, when writing on a blog such as this, one must be aware that this blog attracts a significant portion of it’s readership from autism identity advocates. Generally speaking, autism identity theory considers autistic traits to be the presentation of personality and behavioural trends/characteristics that would be considered part of the ‘person’ if they were displayed in a neurotypical range.

    Hence, ‘person with autism’ implies a seperation of the person from thier traits that make them a whole person, effectively dispossessing the person of their right to personhood. Modern person-second thinking advocates for the idea that autistic people have a right to be autistic without having those traits that constitute ‘autism’ being seen as intrinsically defective, or a ‘disability’.

    One shouldn’t put the person first and disability last simply because the condition is not the disability. The disability is the result of incompatibility of the condition and the environment. I’m disappointed that the ‘special educator’ feels it’s okay to blame autistic people for thier problems.

  17. #17 Joseph
    November 23, 2009

    Your lack of “people first” language is very unprofessional. When referring to people with autism or any disability for that matter, please name the person first and the disability second. For example, say “children with autism”, NOT “autistic children.”

    That’s just not true. In fact, saying “autistic person” is more respectful, just like it’s more respectful to say “gay person” as opposed to “person with homosexuality.”

    Similarly, it’s completely OK to say “disabled person” and it’s completely OK to say “persons with disability.”

    I don’t know who made up the stuff about person-first language, but it just doesn’t work in the real world. It’s something to be decided in a case by case basis.

    In autism research, some researchers use “autistic” as an adjective, and they justify its use.

    Autistic people generally do not like person-first language. So if you have a choice, why not use the preferred terminology of autistic people who care about this?

    http://www.cafemom.com/journals/read/436505/Why_I_dislike_quot_person_first_quot_language_by_Jim_Sinclair

    Wikipedia on person-first language:

    Person-first terminology is rejected by some people with disabilities, most commonly the deaf community and people with autism. The National Federation of the Blind has also officially rejected person-first terminology.

  18. #18 storkdok
    November 23, 2009

    Oh, I see Joseph beat me to it! ;0) What Joseph said.

    Again, Orac, thanks for taking on the autism quacks. As you said so well,

    “Autistic children deserve no less than the best scientific medicine that can be brought to bear on helping them to develop and alleviating their symptoms.”

  19. #19 LK PhD
    November 23, 2009

    Thanks for this post, Orac. I’ve long been irritated by the very term itself – “biomedical therapy” – obviously people are using it in a lame attempt to make it seen respectable, but as you’ve nicely explained, it’s really just a catch-all for unproven “alternative” therapies, used by people like Dr. Butthead (nice try, Brian!).

  20. #20 Todd W.
    November 23, 2009

    @George D

    Others have already addressed your post, but I’m gonna throw in my two cents as well.

    What you propose will do nothing to silence anti-vaccination advocates. Take a look at thimerosal as an example. The government removed it, not because there was any evidence that it was dangerous (the data were just not there), but rather to follow the cautionary principle. Even though lots of research has since come out that thimerosal in vaccines does not raise the risk for injury, it has not been put back in vaccines. The result? Antivaxers point to the FDA’s actions and say “See! It must be bad, since they took it out!”

    There is also a secondary reaction. We took it out, yet autism rates have not declined at all. That, coupled with the research showing no harm from thimerosal, has led antivaxers to move the goalposts: “Well, it must be aluminum, then…or formaldehyde…or…or…or…” For a good example, take a look at Barbara Loe Fisher, head of the poorly named National Vaccine Information Center. She has stated that if it is not the thimerosal, then it must be something else in the vaccine that is responsible for autism. We could take every single thing out of the vaccine and just inject saline and they would still be crying out about how toxic vaccines are.

    So, removing substances that are viewed as toxic, whether or not they really are (to reiterate, the dose makes the poison), really would do nothing to silence anti-vaccine cynics. Instead, it would just give their views mistaken credence.

  21. #21 Richard Eis
    November 23, 2009

    -The success of the biomed approach is shown by Dr Buttars successful treatment of Desiree Jennings…-

    Indeed, I think placebo is certainly one way to treat someone who only thinks they have dystonia.

  22. #22 MDP
    November 23, 2009

    @ George D. This morning I read a Sherri Tenpenny article stating (without references or qualifiers) “It has been proven that there is no safe limit for aluminum.”

    With people intentionally misleading concerned parents like that, it would be impossible to appease all fears by removing vaccine components. When it’s not the mercury any more, it’s the aluminum. When the aluminum becomes old hat, it’ll be the MSG or “monkey pus” or whatever the hell else they can come up with.

  23. #23 Larry Kolibar M.A.
    November 23, 2009

    I would like to say that while some treatments for autism seem extreme and may possibly be harmful a simple change in diet can make a huge difference for many kids.

    While the science may not support the claims made by parents the gluten-free/casein-free diet will do no harm. As Ludwig Feuerbach said “You are what you eat”. If a simple change in diet decreases or eliminates some charactoristics of autism then why not follow it.

    There is no cure for autism it is a lifelong issue. Learning to manage the issue should be the goal of every parent.

  24. #24 Science Mom
    November 23, 2009

    The simplest way of doing so is removing mercury and other toxic substances from all adjuvants. That isn’t entirely possible in every vaccine, but as much as possible it should be aimed for.

    @George, Don’t you think that that has been done? Don’t you think that continuing research is being conducted on different adjuvants? Mercury has been removed from all paediatric vaccines. Do you honestly think that the addition of adjuvants is arbitrary?

    The second thing to do is to treat them with respect – give them more information, and show the benefits. Treating these people like they’re stupid is counterproductive. So is acting in a way that makes them think that the people talking to are being arrogant.

    This is done. We show people the studies, explain the lack of evidence for the safety and efficacy of biomedical treatments for autism. They don’t care. They ‘see’ their children improving or hear of friends that have ‘recovered’ their children or believe their DAN! practitioners that they have ‘cured’ autism. They don’t care about the scientific evidence; they care only about anecdotes.

  25. #25 The Perky Skeptic
    November 23, 2009

    Count me in as an autistic person who prefers the non-person-first approach; in fact, I prefer to call myself and my kid an “Aspie.” (If the medical consensus gets rid of Aspergers as a designation, I suppose we could call ourselves “autsies.” …Er. Maybe not.)

    I am so glad to see more mainstream media outlets tackling these issues. DAN! needs to be taken to task for the harm it does. And, Orac, if anyone ever isolates a genetic marker for wherever the heck you get your energy for constantly fighting the good fight against pseudoscience, I hope they bottle it and sell it as a biomedical treatment for wooly thinking! After rigorous clinical testing, of course. ;)

  26. #26 Joseph
    November 23, 2009

    While the science may not support the claims made by parents the gluten-free/casein-free diet will do no harm.

    Are you sure? Autistic children appear to have deficient calcium and vitamin D intake, even without the GFCF diet (Herndon et al. 2009.)

    The “it’s just a diet” assertion might therefore be quite irresponsible. The GFCF diet is also a gateway for harder woo. Placebo effects in autism are strong, so it’s not unusual for parents to think there might really be something to the other stuff the woo-meisters are selling.

  27. #27 Todd W.
    November 23, 2009

    @Larry Kolibar

    While the science may not support the claims made by parents the gluten-free/casein-free diet will do no harm.

    On the contrary, gluten-free diets tend to be low in vitamins and minerals and higher in fats than non-gluten-free products. (http://celiacdisease.about.com/od/medicalguidelines/a/DietSideEffects.htm) This is an issue that I have a passing interest in, as my father has celiac disease, for which, since it is genetic, I am also at risk.

    Not sure of the potential risks of a casein-free diet, but again, I imagine that there are possible nutrient issues.

    Bottom-line, unless the individual is actually diagnosed as having a gluten or casein intolerance, there is no good reason to put them on a GF/CF diet.

  28. #28 ENT-TT
    November 23, 2009

    At first I thought “Special Ed” was kidding, and just being a bit too dry with their sarcasm. There I go again, letting my optimism get in the way of reality. Geez, what a pisser. Scrabcake nailed it… those who promote “political correctness” must be inherently bigoted, or they’d know how self-superior and unbelievably insulting their “soft words” really are. Do they even give a moment’s thought to how their victims perceive their “support”? Makes me ill to even think about it. Let me clue you in, Ed. I was a weird kid. I was never officially diagnosed with ADD, Autism, or Aspergers (and was never tested for it), but I suspect that I fell squarely into that spectrum. Even if it was something different, that was all that mattered. I was “abnormal”, by just about anyone’s standards. This disparity made me withdrawn, partly from my own pain and cowardice, and partly from a refusal to submit to another’s ignorant preconceptions. I’m not saying they didn’t really care, but the ones who understood most certainly did NOT side-step the issue. The ones who cared showed me they were dependable, and showed me why. They were perceptive, and consistent. But the ones who didn’t care to understand, they talked like you do, “special educator”. And reserved or not, I came to loathe them, their words, their company, and their pretension. It got better as an adult, and most of my issues were worked through, but not because of people who made it a point to constantly remind me of my “disabilities”. In fact, the only reason I didn’t grow up to be a complete sociopath is because of people like Scrabcake. They reminded me that not all humans are worthless sacks of crap. They gave me a reason to want to get better, rather than become completely stagnant and misanthropic.
    As to the rest, I’ve seen my fair share of quackery. I’ve been on the outside looking in, long enough to see things differently. I’ve witnessed those who prey on weakness, and been unable to speak to it. I’ve “seen” the process people subject themselves to when they look away from what frightens them, and I’ve seen it in myself as well. I know from experience that attacking that wall only makes it stronger. It can only be taken down by the person who put it up, as it is a matter of will. When we speak of a “nurturing environment” that fosters this growth, we don’t mean an oblivious candy-land. We mean “what motivates you to grow”. Sugar-coating the pain just sends mixed signals… it doesn’t help. Neither does fabricating an obscene attempt at hope, by throwing away what scares us to burrow in a cozy blanket of “maybe this will work”. Those who suggest that medicine is “wrong” because the process is painful, and try to sell their bullshit to those in pain… they are predators. Their ego is fed by their own belief that they alone are the champions of truth. They are to be pitied, and avoided. Those who work toward finding real solutions are subject to peer review, co-operation, patience, and hard effort. If the solution looks too easy, it’s probably the wrong one.

  29. #29 Larry Kolibar M.A.
    November 23, 2009

    I thought it would go without saying but ANY person who follows ANY diet must consider suppliments to ensure that all required nutrients are being taken in.

    The fact is that many children who suffer from autism are very picky eaters and may only eat certain foods. These children should also take suppliments just as typical children should.

    Again, There is no cure for autism.

  30. #30 Denice Walter
    November 23, 2009

    While I applaud Orac for taking on anti-vax pseudo-science for 12 years(!),I have this gnawing worry: the internet is a sword that “cuts” both ways- and the anti-vaxxers have learned to use it to achingly brilliant effect: spreading their innane ideas virally through articles, videos,”documentaries”,”seminars”,even internet “radio” and “talk shows”(see Gary Null.com and NaturalNews.com for examples of the last two,respectively),allowing cross-pollination of anti-vax “ideas” among “researchers”,and networking between groups.I have the sneaking suspicion that the internet itself may serve to further isolate participants from mainstream thought : those with a poor education in science,especially vulnerable to medical quackery,are the prime target of internet “gurus” spewing hatred of the “medical industrial complex”(sic) and “Big Pharma”, with an unhealthy dose of anti-government,anti-elitism thrown into the mix as well.I find it very ironic that those who earn millions selling alt med products via the internet preach about the “greed” of medical doctors( and corporations) and the “sorry state” of education and science in the US today(see websites cited above for myriad examples;also Mercola.com). I’ve focused on these three culprits because I believe that their websites exemplify the problem and enjoy high traffic(and of course, sales).

  31. #31 Todd W.
    November 23, 2009

    @Larry Kolibar

    The fact still remains that, whether an autistic child is a picky eater or not, arbitrarily putting them on a GF/CF diet is not warranted. There are risks with it, just as with any unusual diet. There’s no good reason to put them on a GF/CF diet and adding on nutrient supplements unless there is a diagnosis of gluten or casein intolerance.

  32. #32 BA
    November 23, 2009

    Larry shoots holes in his own argument. Children with autism (sorry, embedded strongly into my repertoire given I work with kids w/ special needs) are prone to selective eating. They are most likely to selectively accept starches. What happens when you put a selective eater on a GF-CF diet? You take away the foods they most often accept and you end up seeing someone like me, who has experience treating pediatric feeding disorders, to fix their eating. Sometimes things are not as simple as give them the foods they used to eat. Once mealtimes become an aversive routine for children w/ ASDs it is very difficult to establish good eating habits. Restriciting the diets of children that are prone to selective eating IS STUPID!!! As an aside, I’d rather never have to deal with this type of eating problem, it is incredibly frustrating to deal with a completely avoidable situation.

    I’ve been closely following several studies looking at the GF-CF diets (including an NIH-funded endeavor). A couple of these studies should have been finished over 2 years ago but the problem is that they can’t keep kids in the study. They lose lots of weight during the diets and they drop out.

  33. #33 llewelly
    November 23, 2009

    The simplest way of doing so is removing mercury and other toxic substances from all adjuvants.

    Without adjuvants, vaccines require much more of the antigen (usually a dead or disabled virus), and are therefor much more expensive and time-consuming to make. In many cases, this means that without adjuvants, there may not be enough doses, or they may be too expensive for those in need.

    Mercury is not an adjuvant (as far as I know), it is a component in thimersol, a preservative. Without preservatives, the risk of a vaccine becoming contaminated with bacteria greatly increases. That’s why American childhood vaccines are distributed in relatively expensive single use vials – they do not contain thimersol, and thus alternative precautions must be taken.

    In both cases, the result of not using adjuvants, or not using preservatives, will mean fewer people get the vaccine, and more people will get sick. And more people will die.

    This is an example of why “no safe level” is a very dangerous attitude.

  34. #34 Raging bee
    November 23, 2009

    As a probable Aspie, I’m less offended by the order of the description than by the Jenny McCarty/DAN “better dead than autistic” language.

    A large part of this problem, IMHO, is the enormous amount of fear and despair that seems to permeate so many parents’ response to autism. The climate of implacable emotion has led parents to embrace a variety of dubious-to-clearly-bogus “treatments,” and to lash out at anyone who tries to debunk them. Does anyone remember “facilitated communication?” When that was exposed as a scam, many parents responded, not with “thanks for helping us dispense with a money-wasting scam,” but with “how dare you take away our hope?”

    And what’s the deal with “aversive treatment?” Are people still doing that?

  35. #35 T. Bruce McNeely
    November 23, 2009

    I would like to say that while some treatments for autism seem extreme and may possibly be harmful a simple change in diet can make a huge difference for many kids.

    While the science may not support the claims made by parents the gluten-free/casein-free diet will do no harm.

    I would not call a gluten-free casein-free diet a “simple change”, especially for a child. In addition to possible nutritional deficiencies and the major inconvenience of following this diet (ask anyone with coeliac disease), the child is going to be singled out by his peers – you know, the kid who can’t have cake and ice cream at his friends birthday party etc. Kind of harmful for a child who has social difficulties anyway.

  36. #36 Joseph
    November 23, 2009

    And what’s the deal with “aversive treatment?” Are people still doing that?

    The ABA study that is most often cited to support claims of the effectiveness of ABA was a non-randomized non-blinded study that relied on aversives: Lovaas (1987).

    Even though people stay away from talking about aversives these days, they are clearly still used. The most dramatic example would be the Judge Rotenberg Center, which is like Guantanamo for developmentally disabled people who haven’t committed any crimes.

  37. #37 Alison Cummins
    November 23, 2009

    Asking about aversive therapy? Yep, still alive and well. I think they call it ABA these days.

    http://www3.interscience.wiley.com/journal/122581925/abstract?CRETRY=1&SRETRY=0

  38. #38 Swan
    November 23, 2009

    My husband almost died from Guillian Barre, an immune disorder known to be caused by flu shots. He was paralyzed and spent six weeks in the hospital learning to walk again. For that reason I do not find hard to suspect that autism can also be caused by vaccines. My family refused to get the flu shot. My son suffered two bouts of the Swine flu and said he would rather take his chances with the flu than the flu vaccine. Two bouts? Yes, because after he came down with the Swine Flu he took an antiviral, which kept his body from producing the Swine Flu antibodies he need to keep from getting it again. The number of variables in the bodies reaction to vaccines is astounding. And like you said, “a statement of fact cannot be insolence.” http://www.nancyswan.com

  39. #39 Todd W.
    November 23, 2009

    @Swan

    Guillian Barre, an immune disorder known to be caused by flu shots

    Actually, the 1976 flu vaccine is suspected as having contributed to an increase in GBS at a rate slightly higher than the rate in the general population. No other flu vaccine has been found to have an increased risk of GBS. GBS can also be caused by infections.

  40. #40 passionlessDrone
    November 23, 2009

    Hello friends –

    Regarding the diet, a couple of points from someone who has successfully navigated the GF/CF diet for a few years now.

    1) It is increasingly easy to undertake diets without gluten or dairy. Many products are explicitly labeling themselves as gluten free. There are replicas of pastas, breads, and flour mixtures that range from poor to almost the same as their gluten containing counterparts. There is an increased cost.

    2) Our move to a GF diet is a hell of a lot healthier than the diet of most children, and adults, I know. Almost all processed foods are out. Fast food is out. Whole foods are in. Again, there is a cost to this, but just because I can get more calories per dollar at McDonald’s doesn’t mean that it is better. Cheaper doesn’t mean better.

    3) The mineral and vitamin deficiencies noted above are a big problem; funny enough, one that my first DAN identified in my son several years ago. But eating bread or milk that has been fortified isn’t much different than eating other things that have been fortified, or supplemented in. There are plenty of ways to get vitamins without eating bread and milk; espeically milk.

    4) The idea that the biggest problem in kids with autism is being the kid at the party that can’t eat the cake misses the boat entirely, at least in my case. My son, who is now six and a half, doesn’t seem to understand what a birthday is, or indeed, that six is a bigger number than five, and in fact, I’d venture to say he has never had a friend at all. Right now, I’m not too concerned about food based stigmitization. Until we went GF, he was having three or four very loose bowel movements a day, every day for a year. This was something we were very concerned with. If you want to know why so many parents aren’t giving credence to the ideas expressed here, in some cases, it is because it is quite clear that an understanding of the problems they are facing is absent.

    5) For people supposedly against fear based marketing of ideas, the ‘gateway diet woo’ argument is particularly flacid.

    6) As has been pointed out here on several occassions, children with autism have been shown to generate either antibodies, or more robust innate immune responses to gluten than their undiagnosed peers.

    - pD

  41. #41 Denice Walter
    November 23, 2009

    FWIW: AoA today decries the Chicago Tribune article, Science blogs, and Orac.

  42. #42 Katharine
    November 23, 2009

    passionlessDrone, have you considered the fact that it’s not the autism; your child may, in fact, also have a dietary problem?

    ‘Cause this shit happens, you know.

    And I don’t think the antibody claim is substantiated. You are welcome to try to prove me wrong.

  43. #43 Joseph
    November 23, 2009

    As has been pointed out here on several occassions, children with autism have been shown to generate either antibodies, or more robust innate immune responses to gluten than their undiagnosed peers.

    Consistently, pD? Reality is that after 12 years or so, this hypothesis has not produced any results of note. In fact, Pavone et al. (1997) appears to say exactly the opposite.

    Even if there were a marginal connection between celiac and autism, that’s not a justification to put autistic children on GFCF without any testing.

  44. #44 Science Mom
    November 23, 2009

    1) It is increasingly easy to undertake diets without gluten or dairy. Many products are explicitly labeling themselves as gluten free. There are replicas of pastas, breads, and flour mixtures that range from poor to almost the same as their gluten containing counterparts. There is an increased cost.

    Yes so? It is increasingly easy to acquire marijuana. Should we all imbibe then whether medically-indicated or not?

    Our move to a GF diet is a hell of a lot healthier than the diet of most children, and adults, I know. Almost all processed foods are out. Fast food is out. Whole foods are in. Again, there is a cost to this, but just because I can get more calories per dollar at McDonald’s doesn’t mean that it is better. Cheaper doesn’t mean better.

    A completely specious argument. A healthy diet is not defined by a GFCF diet, on the contrary, a strict GFCF diet is nutritionally deficient. It is neither hard nor restrictive to prepare balanced meals and avoid processed and junk foods.

    As has been pointed out here on several occassions, children with autism have been shown to generate either antibodies, or more robust innate immune responses to gluten than their undiagnosed peers.

    Citations please. There is simply no reason for restrictive diets in the absence of challenge tests for protein allergens.

  45. #45 Katharine
    November 23, 2009

    Why is it always uppity parents-who-don’t-know-shit and not professionals doing the trolling (except for Jay Gordon)?

    WHY???!!!!!!!!!!!!!!!111111111111.

    Can we force every parent whose kid gets diagnosed with autism to sit through a short autism biology class so they don’t go nuts?

  46. #46 Katharine
    November 23, 2009

    Before someone says ‘noooooooo you’re being meeeeeeeeean and think of the children!’, I would like to point out that somebody has to be the objective, distant, logical person in this argument. Which requires acknowledging the fact that, yes, you would probably do anything so your kid wouldn’t have autism, and I can see why you’d use crap that doesn’t work if you have neither an understanding of the process nor the ability to think remotely objectively about your child, but guess what, to steal a phrase from PhysioProf, reality is not a care bears fucking tea party.

    This is why it is unethical to let doctors treat friends or family.

  47. #47 Dianne
    November 23, 2009

    Even if there were a marginal connection between celiac and autism, that’s not a justification to put autistic children on GFCF without any testing.

    On the contrary, the usual recommendation is that if celiac disease (gluten intolerance) is suspected that patients not be put on gluten free diets until after testing is completed. Testing is necessary to confirm the diagnosis and a gluten free diet can produce false negatives. This is important for two reasons. First, if the patient doesn’t have celiac disease then avoiding wheat won’t help him/her and will simply limit his/her diet for no good reason. Second, celiac disease is associated with T-cell lymphomas of the stomach and intestines and any celiac patient should have regular testing for lymphomas. A gluten free diet will reduce but not eliminate this risk and so clearly identifying those in need of monitoring is important.

  48. #48 passionlessDrone
    November 23, 2009

    Hi Katherine –

    passionlessDrone, have you considered the fact that it’s not the autism; your child may, in fact, also have a dietary problem?

    This is a possibility.

    And I don’t think the antibody claim is substantiated. You are welcome to try to prove me wrong.

    OK. Not linking due to spam blocking.

    IgA antibodies in Rett syndrome [PMID: 16613867]

    Possible immunological disorders in autism: concomitant autoimmunity and immune tolerance [PMID: 17974154]

    Innate immunity associated with inflammatory responses and cytokine production against common dietary proteins in patients with autism spectrum disorder [PMID: 12378124]

    Evaluation of an association between gastrointestinal symptoms and cytokine production against common dietary proteins in children with autism spectrum disorders [PMID: 15870662]

    Perhaps, you, on the other hand, could provide a study where antibodies for gluten were evaluated for, and not found in higher percentages in the autism population?

    - pD

  49. #49 rrt
    November 23, 2009

    Not to pile on George D, but a couple things I would add:

    Keep in mind that when it comes to “mercury,” we’re not talking about straight-up mercury. Thimerosal is a chemical compound. It’s a molecule that has mercury atoms as part of it’s structure. Compounds containing mercury, and elemental mercury for that matter, obviously do not have identical properties…and it follows, then, that the fact that some mercury compounds are very toxic to humans doesn’t mean they all are. Especially when they’ve been specifically proven not to be.

    I know this is a ridiculously obvious point, but look at your own usage of the word. It’s drawing no distinction. Some of us even fall into that trap. If we’re going to obsess over word usage, I’d think this is a better area to do so.

    As for how we treat antivaxxers, I echo others here: We’ve done what you suggest. Indeed we still do under many circumstances. It’s just that you’re coming late to the party where the likes of AoA are concered. I can appreiate your desire to be nice and patient–in fact I think that’s why you want to consider the honestly misguided as a separate group. You want to avoid denigrating them. But these people are NOT separate, they’re the rank-and-file, bread-and-butter of these groups. And as much as they really honestly believe this crap, and as much as we still really try to politely explain the scientific reality to those of them who ask us, experience has taught us to expect little success. It becomes more about getting the science out there for the sake of those who aren’t too far gone.

    Doesn’t mean we don’t get a little bitter now and then, though… ;)

  50. #50 BA
    November 23, 2009

    Funny you should mention marijuana SMom. It is the cure for autism, if you didn’t already know.

    http://www.momlogic.com/2009/11/can_marijuana_help_kids_with_autism.php

  51. #51 Dr Ditz
    November 23, 2009

    I think most parents of autistic children should pay attention to a guy named Orac the Nipple Ripper.

  52. #52 Dianne
    November 23, 2009

    Another random comment about restricted diets in autism: People have already noted that autistics are often “picky eaters”. What hasn’t been addressed (at least not as far as I’ve seen) is the fact that autism often includes sensory disintegration. That is, sensations that may be minor annoyances or even go unnoticed by neurotypicals can be acutely painful for autistics. So when an autistic kid (or adult) refuses to eat something or says they don’t like it they may mean that the very smell is causing them nausea and the idea of eating it has all the appeal of swallowing bleach, maybe less appeal because bleach might be somewhat less smelly. This is something parents should keep in mind when they’re tempted to limit their autistic child’s food choices.

  53. #53 Agashem
    November 23, 2009

    Passionless Drone,
    You have a hypothesis that seems to relate to your own child. My experience with my autistic daughter is quite different. The point is, it has not been credibly explained to me how digestive problems leads to or exacerbates autism. If it is an allergic reaction, why doesn’t it look like other allergic reactions? If it is something else, than what? My 16 year old PDD/NOS daughter is now in grade 11 with no in class support and has an 80 average in english. No special diet ever.

  54. #54 passionlessDrone
    November 23, 2009

    Hi Science Mom –

    Yes so? It is increasingly easy to acquire marijuana. Should we all imbibe then whether medically-indicated or not?

    The argument was made that the jump to a new diet is difficult. I merely sought to illustrate that this is not necessarily true. To my knowledge is nothing that is medically indicated for autism at all.

    A completely specious argument. A healthy diet is not defined by a GFCF diet, on the contrary, a strict GFCF diet is nutritionally deficient. It is neither hard nor restrictive to prepare balanced meals and avoid processed and junk foods.

    A GFCF diet does not have to be nutritionally deficient. In our case, moving to this diet has resulted in the opposite. Dealing with any deficiencies caused by not eating fortified grains or milk is relatively straightforward to handle.

    And in any case, my son was going to the bathroom four times a day, every day, while on a diet that included wheat and dairy. If you have some substantiation to the notion that this would be healthier than what he’s getting now, I’d love to see that.

    Citations please. There is simply no reason for restrictive diets in the absence of challenge tests for protein allergens.

    Please see previous post.

    - pD

  55. #55 Joseph
    November 23, 2009

    Perhaps, you, on the other hand, could provide a study where antibodies for gluten were evaluated for, and not found in higher percentages in the autism population?

    Again, Pavone et al. (1997) seems interesting in that it doesn’t find a single case of celiac disease in autistic children, and it doesn’t find a single case of autism in children with celiac. As to antibodies, it says: “although two of them had slightly increased levels of AGA IgG and AEMAb, subsequent antibodies determinations and jejunal biopsies gave normal results.”

    Then you have the only double-blind randomized trial of GCFC for autism, which was unfortunately quite small (n=15): Harrison Elder et al. (2006). They collected data on urinary peptides, and there were no statistically significant between-group findings.

  56. #56 Jen in TX
    November 23, 2009

    “…the child is going to be singled out by his peers – you know, the kid who can’t have cake and ice cream at his friends birthday party etc. Kind of harmful for a child who has social difficulties anyway.”

    I can assure you that my younger son would much rather be singled out as the kid who can’t have cake and ice cream at parties than the kid who shits his pants every day.

    While we’re on the subject of GI issues, I came across this yesterday, and thought it was interesting, since my older son suffers from GERD…

    Reflux Esophagitis Due to Immune Reaction, Not Acute Acid Burn
    http://www.sciencedaily.com/releases/2009/11/091119111335.htm

  57. #57 Todd W.
    November 23, 2009

    @pD

    Here you go: http://tinyurl.com/yfo8dr4

    “Relation of childhood gastrointestinal disorders to autism: nested case-control study using data from the UK General Practice Research Database.” PMID: 12193358

  58. #58 passionlessdrone
    November 23, 2009

    Hi Agashem –

    You have a hypothesis that seems to relate to your own child. My experience with my autistic daughter is quite different. The point is, it has not been credibly explained to me how digestive problems leads to or exacerbates autism. If it is an allergic reaction, why doesn’t it look like other allergic reactions? If it is something else, than what? My 16 year old PDD/NOS daughter is now in grade 11 with no in class support and has an 80 average in english. No special diet ever.

    Indeed, my hypothesis involves what I have observed with my child, and some others that I’ve known. I’ll be the first to admit that there are plenty of kids out there on the spectrum that don’t benifit from dietary restriction. I should have made this more clear.

    As towards the potential mechanism(s) of action, it isn’t clear to me either. But there are several possibilities that I’ve come up with.

    1) His (apparent) reactions to these proteins is coincidental to his autism. But he feels better when his bowels are working, and everyone acts better when they aren’t feeling poorly.

    2) An increase in peripheral inflammation, and consequent increase in neuroinflammation and/or cns excitability. [see, PMID: 18955701]

    3) Perhaps the wrong argument has been being made, and the causation problem is inverse; it isn’t that getting gluten causes autism, it is that having autism causes you to be more likely to generate a response to gluten. By way of example, check out the IgA antibodies to gluten in Rhetts syndrome paper I posted above; here we have a case where we have a known cause of autistic behaviors, but we still find antibodies to gluten in increased levels. Why would this be the case?

    Biomarkers of exaggerated stress response have been observed in autism; and a chronically stress has been known to affect a wide range of gastro intestinal functions.

    4) Something else entirely. The opiod theory seems to have evidence against it, so that seems unlikely.

    I am pleased that your daughter is doing well, and has had no digestive issues and eats a standard diet. I appreciate your tone, thank you.

    - pD

  59. #59 MikeMa
    November 23, 2009

    pD and others
    The likeliest cause for autism is genetic and like most complex genetic issues, the genetic component is likely to be scattered across many genes and locations. It could very well be that one of the genes causing autism is shared with a gene for an allergic or food intolerance reaction. With the wide range of autistic-ness as expressed by the term spectrum, it would probably be surprising if there weren’t some overlap with it and other conditions. All the more reason to stop wasting money on pointless studies to yet again clear mercury as a cause of autism and to focus more on the genetics involved.

  60. #60 Science Mom
    November 23, 2009

    The argument was made that the jump to a new diet is difficult. I merely sought to illustrate that this is not necessarily true. To my knowledge is nothing that is medically indicated for autism at all.

    You are a single anecdote; restrictive diets for ASD children that may already be picky-eaters or have food/smell aversions may not transition well and increase nutritional deficits.

    A GFCF diet does not have to be nutritionally deficient. In our case, moving to this diet has resulted in the opposite. Dealing with any deficiencies caused by not eating fortified grains or milk is relatively straightforward to handle.

    Again, you are a single anecdote, your experience does not represent all ASD children who are put on GFCF diets. It may very well be the case that parental commitment to providing well-balanced, nutritionally-complete food choices would also improve GI-related symptoms.

    Please see previous post.

    I did and have read all but one of your citations. None have demonstrated gluten and casein allergies/intolerances in excess of the general population. So as it stands, there isn’t any justification to prescribe radical diets in the absence of antigen challenge testing.

  61. #61 Kismet
    November 23, 2009

    To continue from the other thread from the other blog — Vitamin D deficiency causes autism! Ok, I am just kidding. I hate Cannell’s unprofessional articles myself, but most of his articles that make it through peer-review are pretty interesting (& *hypothesis*-generating).

  62. #62 Kimberly
    November 23, 2009

    @Denice: “While I applaud Orac for taking on anti-vax pseudo-science for 12 years(!),I have this gnawing worry: the internet is a sword that “cuts” both ways- and the anti-vaxxers have learned to use it to achingly brilliant effect”

    All too true. I run a small philosopher/skeptic group in my county, and at our last meetup the topic was one I’d suggested – medical misinformation and why people are susceptible to it. What was startling was that about half the group had heard of the efforts of people like Orac to combat anti-vax and anti-science medical efforts, but EVERYONE in the group knew about Jenny and her “science” boy Evan, and the claim that multiple vaccines MUST, in some way, be bad for you. And these were people who were inclined to be skeptical, yet only half were finding the genuine stuff out there in the morass of the quackery.

    The bad information is spreading faster than the good information, dang it. Blogs may be powerful, but until we get on Oprah, the Today Show, etc, it’s hard to effectively fight this battle.

  63. #63 Jill
    November 23, 2009

    “As a probable Aspie, I’m less offended by the order of the description than by the Jenny McCarty/DAN “better dead than autistic” language.”

    THIS. I was never diagnosed, because autism wasn’t so ‘trendy’ when I was a kid as it is now, and was likely under-diagnosed (though I think the balance has now tipped to OVER-diagnosed.) But looking back, and looking at some of my current, ah, quirks, I almost certainly am on the spectrum, and was more severe as a young child. It’s incredibly annoying when people treat it as something so horrible that they would rather see a child dead than autistic. What a horrible thing to say. I do realize that autism can be crippling if severe enough, but they act like even the faintest touch of it is a horrible affliction. I may be a little odd, but I am happy with who I am. If I was told tomorrow that I could take a pill and the autism would be gone forever… I wouldn’t take it, because by this point, it is a part of who I am, and I wouldn’t want to lose myself.

  64. #64 Archangl508
    November 23, 2009

    Swan,

    “My son suffered two bouts of the Swine flu and said he would rather take his chances with the flu than the flu vaccine. Two bouts? Yes, because after he came down with the Swine Flu he took an antiviral, which kept his body from producing the Swine Flu antibodies he need to keep from getting it again.”

    How do you know he had two bouts of swine flu? Did you have him PCR tested for virus twice? If not it is highly probable that he had the swine flu, the regular flu, or some other respiratory pathogen that causes flu-like symptoms (there are quite a few of those).

  65. #65 Mark
    November 23, 2009

    The main thing I do not like about blogs is it is just some guys raving opinion. in general most blogs are just hateful. this blog was not helpful to read and i just read a bit and tuned out. if your blog had a nelson rating you would be canceled and off the air

  66. #66 Chris
    November 23, 2009

    Concern troll is bored.

  67. #67 Rogue Epidemiologist
    November 23, 2009

    @Mark
    Oh NOEZ! You didn’t like Orac’s blog! You’d rather apply Nielsen (btw, it’s not Nelson, but you might know that if you’d watch less television) ratings to Internet content and cancel programming if it fails to meet a bottom line.

    We all know Nielsen ratings ensure excellent television programming. Like seventeen thousand seasons of ‘Survivor’ or the remakes of ’90210′ and ‘Melrose Place.’

    yeah.

  68. #68 Orac
    November 23, 2009

    No, concern troll is concerned.

    Of course, it never ceases to amaze me how people like Mark think that anyone gives a rodent’s posterior what they think. And they almost always keep reading…

  69. #69 Chris
    November 23, 2009

    Actually, what I think I should have said was the concern troll is boring. Like you said, who cares what they think? If they don’t like a blog, don’t read it.

  70. #70 Dianne
    November 23, 2009

    Even if there is no relation between celiac disease and autism, it is entirely possible that pD’s child has both. I would encourage him/her to get the child tested for the reasons I mentioned above.

  71. #71 dreikin
    November 23, 2009

    pD:

    Have you ruled out lactose intolerance or related issues? Foods are fairly complex in composition, and many things other than casein/gluten could cause the one symptom you’ve named so far, and also be resolved by that change of diet.

  72. #72 Orac
    November 23, 2009

    Actually, what I think I should have said was the concern troll is boring. Like you said, who cares what they think? If they don’t like a blog, don’t read it.

    Exactly. Or argue substance if he disagrees with me so strongly. Making a show of telling me how much he hates my blog is truly lame. Pathetic.

  73. #73 Dianne
    November 23, 2009

    Slightly tangential to topic, but what’s the deal with alties, the immune system, and inflammation? They keep going on about reducing inflammation and strengthening the immune system. But a strong immune system produces a vigorous inflammatory response to stimulus. So which do you want? Good immunity or no inflammation?

  74. #74 Joseph C.
    November 23, 2009

    The main thing I do not like about blogs is it is just some guys raving opinion.

    Actually, this blog is written by a cancer surgeon who frequently writes about his area of expertise, which kind of sets it apart from just some random guy’s political blog.

  75. #75 T. Bruce McNeely
    November 23, 2009

    if your blog had a nelson rating you would be canceled and off the air

    Would you give it a half-nelson?

  76. #76 jj
    November 23, 2009

    Great article Orac (as always), but I have a question for the readers here. I work for a [ducks] “natural supplement” company [/ducks] (I swear we’re legit, our pre-natal vitamin is our flagship, but there’s some woo..) and we have a Omega supplement (which I take, but only for a sugar fix).

    Now, we get all kinds of consumer testimonials (or shall i say, anecdotal stories) from customers who give the daily supplement to their autistic children. There is this claim that the Omega supplements help their children. Is there any scientific basis to this?

    As far as I know (I’m not R&D or anything like that) Omega’s help with clear thinking and concentration (?), so I could see this as being helpful to relieve symptoms (like how hydrocodine will relieve a broken leg, but not fix it). I’ve heard people spout that it’s “curing” the autism, which seems off base to me. More like it’s helping control while the person goes through natural progression.

    Does anyone know if there is any science on Omaga and brain activity that might support any of this?

  77. #77 Pareidolius
    November 23, 2009

    Well clearly “Omagas” don’t help with teh speling or gramer.

  78. #78 Uncle Stabby
    November 23, 2009

    Ms. Swan and family seem to have led lives of dramatic misfortune. That she profits professionally from these hyperbolic tales makes her take on vaccines a tad suspect since methinks she sees ‘teh toxins’ everywhere.

  79. #79 Daniel J. Andrews
    November 23, 2009

    Would you give it a half-nelson?

    Is that like a subluxation? That can’t be good for its vertebral artery.

  80. #80 Chris
    November 24, 2009

    jj, you asked about Omega oil supplements… If you want to know if there are any studies you might try checking http://www.pubmed.gov.

    Back in the day when I was on a mommy board for my kid’s disability oil supplements were often discussed. This was a long time ago, and the only thing that was certain was that primrose oil was not good for kids with a history of seizures. Since my kid had a history of seizures, I avoided them.

    But there have been lots of discussion on various oil supplements. It got very interesting when parents were freaking out about mercury, and realizing that some of the oils were fish derived (don’t even get me started on natural food stores selling squalene supplements!).

    I just don’t know if there was any real science behind them. I do know that lots of people push them (I found out one of the “mommy” fans of supplements turned out to be an employee of DAN! quack who sold them, she was on the listserv to drum up business).

    That might give you a clue.

  81. #81 ENT-TT
    November 24, 2009

    @Jill
    Well said.

  82. #82 Calli Arcale
    November 24, 2009

    Jen in TX @ 55:

    While we’re on the subject of GI issues, I came across this yesterday, and thought it was interesting, since my older son suffers from GERD…

    Reflux Esophagitis Due to Immune Reaction, Not Acute Acid Burn
    http://www.sciencedaily.com/releases/2009/11/091119111335.htm

    That’s fascinating. If true, it might explain why there appears to be a correlation between asthma and GERD, despite there being little logical reason for a connection (apart from severe GERD leading to damaged bronchi if you end up aspirating stomach acids). If immune response is a factor in both, perhaps there is a connection there, though it’s still not obvious to me exactly what it would be.

    Notably, some acid reflux medications (e.g. Zantac) don’t just reduce acid production. They’re also antihistamines. I wonder if they also interfere with the release of cytokines? I do know they’re not as effective at controlling my GERD symptoms as proton pump inhibitors (e.g. Prilosec) are.

    Still, the article didn’t seem to address the root cause. They were looking at the progression of erosive esophagitis, not the reflux itself. In other words, they aren’t exploring the cause of GERD; they’re exploring what actually causes the erosion. Acid reflux is a mechanical problem, so a treatment exploiting this research might yield better long-term management but would not be a cure.

  83. #83 jj
    November 24, 2009

    @79,
    Thanks Chris, I actually never though of the whole mercury in the Omega oils ;), that’s kind of funny. I’ve looked at some study’s about Omega’s, but not too much (like I said, not R&D, but IS). More interested if the company I work for is making anything worth while or just woo. If it’s supported by DAN!, then that gives you an idea of where it sits on the credibility scale.

    Well clearly “Omagas” don’t help with teh speling or gramer.

    Wow, way to get me on a couple of typo’s. I ask a genuine question and that’s your answer? Good job! (I admit it was a sloppy post, but hey, I was a few beers in).

  84. #84 Denice Walter
    November 24, 2009

    @ Kimberly: By running a small county group,*you* contribute greatly,as well.I think that getting people to talk about these topics is very important to our efforts.

  85. #85 NZ Sceptic
    November 25, 2009

    For some reason the story of Kent Heckenlively’s daughter always breaks my heart more than anything else when this issue is discussed. This poor little girl is deemed broken by her father – and presumably her mother too – and is subjected to endless intervention and all manner of unpleasant experiences which she probably doesn’t understand. Quite apart from the money he’s wasted and the quacks’ pockets he’s lined, I wish for his child’s sake he would celebrate and love her for who and what she is, let her get on with living her only life, and stop using her to try to make a futile sort of point!

  86. #86 ebohlman
    November 25, 2009

    Dianne: When alties talk about the “immune system” they often really mean “vital force.” They’re using scientific terminology to describe a pre-scientific concept.