Articles

The autism “biomed” movement: Uncontrolled and unethical experimentation on autistic children

Ever since 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, 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, 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 trial 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, and not because they “challenge” medical orthodoxy. 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 case histories in which children were subjected to 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, along with another journalist from the Chicago Tribune, Patricia Callahan, 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.

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. 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.

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.

Autistic children have paid the price. 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.

Posted in: Health Fraud, Herbs & Supplements, Public Health, Vaccines

Leave a Comment (46) ↓

46 thoughts on “The autism “biomed” movement: Uncontrolled and unethical experimentation on autistic children

  1. Dr Benway says:

    *tinfoil hat*

    Korean Intelligence gives bags of money to the Moonies, who then send it to the University of Bridgeport College of Naturopathic Medicine, the Washington Times, and various “freedom” organizations pushing an anti-federalist agenda (Stubblebine, anti-vax, anti-FDA, anti-tax, religious right, etc.).

    Hmm. Wonder why Korea would like the US to have a weak federal government…

    Anyway, some of this dosh trickles down to Art Scott Bell and Dr. Rashid Buttar. Thank god, eh? Else poor Desiree Jennings likely would have kicked it by now.

    */tinfoil hat*

  2. storkdok says:

    “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.”

    Thank you, from the bottom of my heart! I am so glad the mainstream media seems to be taking this seriously now. It is really depressing to be surrounded by this pseudoscience. It isolates those of us (parents of autistics) who reject it and speak out about it. I am confronted with this quackery every day, and the “cure” mentality is very damaging to those with autism.

    My son is a joy, I celebrate every day with him. He is happy, and continues to learn every day.

  3. oderb says:

    I believe the most promising explanation of the etiology of autism is from Dr John Cannell of the VitaminDCouncil.org.

    His paper state

    “DOES THE VITAMIN D THEORY BEST EXPLAIN AUTISM?The theory that vitamin D deficiency, during pregnancy or childhood, causes autism is just a theory. However, the theory has a plausible mechanism of action, explains all the unexplained facts about autism, subsumes several other theories, implies simple prevention, and is easily disprovable—all components of a useful theory. A genetic lesion (abnormality) in some component of the vitamin D system—a lesion vitamin D’s unique pharmacology could overcome—would explain why monozygotic (identical) twins are highly affected while fraternal twins are not. Varying brain levels of activated vitamin D during later life would explain why some identical twins get severe disease while others are barely affected. Falling vitamin D levels over the last 20 years due to sun-avoidance explain autism’s rapid increase in incidence during that same time. The very different effects estrogen and testosterone have on vitamin D metabolism may explain why boys are much more likely to get it than girls are. Lower vitamin D levels in blacks may explain their higher rates of autism. The vitamin D theory has tenable explanations for all the epidemiological features of autism.”

    I find the sociology of this theory fascinating, in that it essentially indicts both the biomed approach and conventional medical practice – the first by negating the central role of toxins and vaccines, and the latter by laying much blame on the extremism of the dermatology establishment in demonizing sun exposure. And so the autism may be yet another iatrogenic illness.

    I’d love to see a blogger here seriously critique Dr. Cannell’s paper which can be found at

    http://www.vitamindcouncil.org/health/autism/vit-D-theory-autism.shtml#hd1

  4. Scott says:

    oderb,

    Just from the first few pages it’s clearly garbage:

    1. Not published in a peer-reviewed journal.
    2. Claims that the incidence of autism is increasing.
    3. No references.

    It’s a sales pitch, not a scientific paper.

  5. From the American Journal of ObGyn:

    “In the opinion of the Editors, the claims of this advertisement are not founded with any degree of reasonable scientific evidence specifically as it relates to the link between Vitamin D and autism. The references that the advertisement provides to support this association cite evidence that is, at best, suggestive, and the conclusion is little more than conjecture, perhaps enticing enough to warrant real research on this subject but nothing beyond.”

    http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6W9P-4WNB0TD-4&_user=483692&_rdoc=1&_fmt=&_orig=search&_sort=d&_docanchor=&view=c&_acct=C000022720&_version=1&_urlVersion=0&_userid=483692&md5=6a5b9c0a3f6adbd528a762daa6578f2c

  6. David Gorski says:

    Oh, goody. I haven’t seen the vitamin D cranks descend in a while…

    There’s evidence out there that vitamin D supplementation to achieve a certain blood level may be beneficial for certain conditions, but people like oderb take suggestive data and then declare vitamin D deficiency the cause of all diseases and the cure for all diseases. (Well, maybe not all diseases, but a heck of a lot of them.)

  7. daedalus2u says:

    oderb, if there was a “genetic lesion” in vitamin D pathways, that would have fallen out of the large genetic screenings that have been done. There isn’t a “smoking gun” of a handful of genes. The genetics of autism involves at least dozens and perhaps as many as hundreds of genes.

    That the idea of low vitamin D causing autism fits a good story line and feeds into an iatrogenic model may be satisfying to the biomedical crowd and a good marketing ploy to feed to the anti-vaxers, it is not evidence in its favor.

    I have seen no data supporting an excess incidence of autism in blacks. The best data I am aware of says there is either no difference, or an excess in whites. If vitamin D deficiency in utero was a risk factor for autism, there should be a significant excess in blacks. The paper linked to in the article was small (601 cases), old (birth cohort 1986-93), only in a single US city (Atlanta) and only shows an excess in blacks of the combination of autism + mental retardation. When autism is taken out as a subgroup, blacks have a lower incidence (0.5 (95 CL 0.4-0.7)). This recent article indicates an incidence in blacks less than in whites.

    http://ajph.aphapublications.org/cgi/content/abstract/99/3/493

    The article you linked to is written by a crank, who repeats the factually wrong statement that:

    ”Autistic individuals have difficulty excreting heavy metals like mercury.”

    There is no data that suggests this. This is the ad hoc explanation for the observation by the chelation quacks that when they chelate children with autism, not very much mercury comes out. The more prosaic explanation (which happens to actually be consistent with everything that is knows about mercury physiology and autism) is that people with autism don’t have excess mercury to begin with, and so there is no mercury to come out during chelation, so its absence following chelation is not a surprise.

    I would not characterize the idea that low vitamin D causes autism to be a “hypothesis” because there is evidence that is inconsistent with it. It is an idea, that perhaps deserves more work. Certainly any children, including children with autism, who are shown to be deficient in vitamin D should receive appropriate treatment including supplements when appropriate, but excess vitamin D is toxic.

    Not to pile on, but I wasn’t quick enough to beat Scott, Steve and David :(

  8. Calli Arcale says:

    Just to add to what others have already said about the Vitamin D paper:

    “DOES THE VITAMIN D THEORY BEST EXPLAIN AUTISM?The theory that vitamin D deficiency, during pregnancy or childhood, causes autism is just a theory.

    The phrase “just a theory” in an allegedly scientific paper is a huge red flag, because it indicates the person is not using the term “theory” by its accepted scientific meaning. This is such a basic error that it makes it very difficult to take seriously anything following it. In short, it quickly identifies the paper as not being a scientific paper at all.

  9. Zoe237 says:

    “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.”

    What kind of treatments are showing promise in scientific autism research? It seems we need to offer desperate parents scientific alternatives to chelation therapy or other non SBM practices.

  10. Harriet Hall says:

    Zoe237,

    The Association for Science in Autism Treatment has a website with summaries of the research for a whole list of interventions at http://www.asatonline.org/intervention/treatments_desc.htm
    It’s an excellent resource.

  11. Grinch says:

    oderb,
    I agree with you, in fact let me take it a step further. I don’t think it’s the dermatology industry and their demonization of sun light. I think it Big Ophthalmology! Yes, Big Optha, has, for eons, been touting the alleged “benefits” of β-carotene, as it pertains to “good” eye “health.” In fact, the even expect us to believe that ATRA (all-trans retinoic acid) should be used in some cancers!!!! We know that better!
    What if Big Optha, Big Pharma, and Big Farma (carrot growers) are all in on it together? I think there’s a pattern here. I mean, just look, people that eat carrots suffer from things like cancer and even acne! Spread the word! Oh, yeah, make sure you have brand your brand new Nikes

  12. micheleinmichigan says:

    Zoe237

    “What kind of treatments are showing promise in scientific autism research? It seems we need to offer desperate parents scientific alternatives to chelation therapy or other non SBM practices.”

    Yes. This article would be strengthened by covering some of the therapies that have shown some scientifically documented success. Don’t just leave the parents hanging on “that’s bad” give them something that’s worse perusing.

    My understanding from talking with parents of children with autism spectrum disorders or PDD are that Applied Behavior Analysis (ABA) and Floortime are two therapies that have shown success in building necessary skills such as speech, social connection, decreasing stimming, helping to decreasing anxiety and tantrums, etc.

    But this is just hearsay.

    Sadly many insurance companies don’t pay for these therapies (the belief is that the schools should provide them) and some school’s Early On and Preschool Special Education programs are understaffed and anything but science based. I don’t want this to be an indictment of all school PSE programs, some are excellent, there is just very uneven performance.

  13. micheleinmichigan says:

    Dr Harriet Hall,
    Good Link to pass on to friends. Thanks!

  14. joseph449008 says:

    My understanding from talking with parents of children with autism spectrum disorders or PDD are that Applied Behavior Analysis (ABA) and Floortime are two therapies that have shown success in building necessary skills such as speech, social connection, decreasing stimming, helping to decreasing anxiety and tantrums, etc.

    Well, I don’t think there’s a single published trial of Floortime. Either way, there aren’t very many.

    ABA is mainstream and recommended by professionals. However, its evidence base consists mostly of case series and non-randomized trials. The only randomized trial of ABA produced results that were not very impressive. I get the feeling that as trial methodology improves, the observed effects vanish.

  15. micheleinmichigan says:

    joseph449008 “Well, I don’t think there’s a single published trial of Floortime. Either way, there aren’t very many.
    ABA is mainstream and recommended by professionals. However, its evidence base consists mostly of case series and non-randomized trials. The only randomized trial of ABA produced results that were not very impressive. I get the feeling that as trial methodology improves, the observed effects vanish.”

    Are there other non-CAM therapies that you would recommend? Understand, doing nothing doesn’t have a huge success rate either.

  16. Zoe237 says:

    Thanks for the link.

    Here’s another (though the above link) that claims that “there are currently no scientifically validated treatments for the core deficits of autism.” It does describe Applied Behavior Analysis positively. I am glad there is ongoing research, but I feel for the parents of children with autism who have to sift through all of this information, so much of it biased.

    http://www.researchautism.org/uploads/roadless.pdf

  17. oderb says:

    As usual the hostility and name calling on a so called science based blog continue – as I anticipated, based on my experience reading and commenting here.

    So now I’m a Vitamin D “crank” according to Gorski because I “declare vitamin D deficiency the cause of all diseases and the cure for all diseases.”

    Of course I said no such thing and simply presented an article that as a non scientist seemed to be worthy of review and invited comments to learn more about its merits and weaknesses.
    Isn’t that the point of this blog – to apply science and not emotion to medicine?

    Instead with one or two exceptions the closed minds that frequent this site are at it again. I appreciate that Daedalus took the time to respond with science. I would love to hear Dr. Cannell’s response to those comments.

    Scott is dismissive of the article because of the claim that autism is increasing. Where is your evidence that autism is not increasing?

    You also indicate that the paper has no references, which proves that you didn’t even bother to read it, as there are dozens of references.

    It’s tiresome to respond to these no nothing attacks, when all I was looking for were some science based comments on Dr. Cannell’s hypothesis.

    Even the quote from Dr Novella said in part that the theory was ” perhaps enticing enough to warrant real research”, which is the point of Dr Cannell’s effort.

    Yet my sense is that many here would be against ‘real research’ because it doesn’t fit in with their pharmaceutical ideology, or maybe it’s that a psychiatrist working on his own, with no establishment base or fancy funding could come up with something -that if proven to be true – has eluded the medical establishment. And of course, if the research demonstrated that Vitamin D deficiency is a significant causal factor in autism, it would be one more strike against the medical orthodoxy that demonizes the sun.

    And what’s the harm, as Dr Cannell asks, for pregnant women and children to be treated to insure that the millions of kids and women (and the rest of us) who are now deficient have adequate levels of D.

    It’s not like he’s advocating coffee enemas after all…

  18. David Gorski says:

    Spare me.

    The idea that vitamin D deficiency is a cause of autism falls into the same territory right now as a lot of stuff on NaturalNews.com. In any case, there’s no good evidence to support such a contention, and you did indeed come across sounding like another vitamin D “miracle” believer. Perhaps I was a bit too sarcastic, but the material in the link you provided dove straight into woo territory.

    As for evidence that the true rate of autism prevalence is not increasing? You’re kidding, right? We’ve blogged about that time and time again on SBM. The increase in autism diagnoses is almost certainly nearly all accounted for by the expansion of the diagnostic criteria in the 1990s, diagnostic substitution, increased awareness, and increased screening. There may have been a slight increase in the true rate of autism prevalence or there may not have been (the data do leave room for either), but there is most definitely no autism “epidemic.”

  19. Scott says:

    You also indicate that the paper has no references, which proves that you didn’t even bother to read it, as there are dozens of references.

    Either they don’t exist, or they’re very well hidden. No footnotes. No embedded citations. The hyperlinks are not to references. There is no list of references at the end. These are the places references would be expected, and they’re quite simply not there.

    Even IF there are actual references which are hidden someplace, the fact that they are not clearly provided to the reader is sufficient to demonstrate pure crankdom.

  20. “Don’t just leave the parents hanging on “that’s bad” give them something that’s worse perusing.”

    In the business world it is often considered unacceptable to give reasons not to go forward with something unless you propose an alternative or solution to the problems, but I think that is wrong in business, wrong in science, and wrong in medicine.

    A treatment is either safe and effective or it isn’t. If there are multiple options all scientifically shown to be safe and effective, we can talk about which one(s) have a better balance of safeness and effectiveness, but just because I can’t give a viable solution to a problem doesn’t make any solution proposed by someone else viable.

    “Are there other non-CAM therapies that you would recommend? Understand, doing nothing doesn’t have a huge success rate either.”

    Sometimes doing nothing is better/safer than doing the wrong thing, and sometimes doing nothing is the same as, but less expensive than doing something that doesn’t work.

  21. Grinch says:

    Oderb,
    How can you possibly make this statement and expect to be taken seriously? There was no argumentum ad hominem (well, maybe a little on my part) but your argument is purely Tu Quoque.

    “Yet my sense is that many here would be against ‘real research’ because it doesn’t fit in with their pharmaceutical ideology, or maybe it’s that a psychiatrist working on his own, with no establishment base or fancy funding could come up with something -that if proven to be true – has eluded the medical establishment. And of course, if the research demonstrated that Vitamin D deficiency is a significant causal factor in autism, it would be one more strike against the medical orthodoxy that demonizes the sun.”

    “medical orthodoxy” as you call it, is based on science and based on what we know about that science. For instance, in simple lay term that you may understand, medical orthodoxy, dictates that a heart attack is caused by a lack of flow to the heart arteries. This causes the cells of the heart to die. This is what we know. Science has proven this. Science has disproven that heart attacks are caused by imbalance in ones shakras or by not enopugh prayer. By the very virtue that science has shown exactly how heart attacks are caused, it has delitegimized any other cause (you know, besides plaques).

    Now to the point of the “establishment.” Why is it that every single kook theory out there is supported by the same logic and reasoning? “It’s the medical establishment, big pharma, blah, blah, blah…that want to silence it’s critics.” Why would anyone take seriously what you have to say, when you (general) speak in those terms? What demonization of the sun are you talking about? The skin cancer prevention? That “demonization”? What you fail to understand is that skin cancer is a very real threat. Vit-D deficiency, when picked up, is treatable. Do you know, how long you have to be in the sun for in order to get enough vit-D versus how much you need for it (sun) to be a carcinogen?
    You are speaking out of school and perhaps be better off listening to what people such as Gorski, et al. have to say about these matters. Then take everything into consideration like if the Vit-D theory was so solid, why do we not see a huge bump in Autism in kids that are in countries that are exposed to less light and decreased in countries with plentiful light? Also, why doesn’t this effect adults or kids that have kidney problems?
    I think you should do a better job of listening to experts and not reach for conclusions that are the latest fad.

  22. “It seems we need to offer desperate parents scientific alternatives to chelation therapy or other non SBM practices.”

    That’s one of the key differences between SBM and pseudoscience. Sometimes in SBM there is no effective treatment available. Doctors and scientists are willing to admit that. In CAM, though, every disease, disability and syndrome has a “treatment.”

  23. micheleinmichigan says:

    Really, what a frustrating conversation. Speech Therapy and Occupational Therapy are practiced everyday in hospitals and schools to help children with autism. I am not talking about a cure. I am talking about working with a child to encourage verbalization social contact, sometimes coordination, etc. I am sure that they do have varying level of success depending upon the therapist, teacher and child, but I find it incredibly hard to believe (having seen many of these children progress) that they are making no better progress than with no intervention at all.

    So I am going to ask you Doctors and other commenters what I always ask our pediatricians (and they always answer thoughtfully). If it were your child, what interventions would you pursue first? Realize that if you don’t choose, you are just letting your school district choose for you and the person making that choice may have little or no training in special education.

  24. rich09 says:

    Interesting article;

    http://www.medicalnewstoday.com/articles/171457.php

    19 Nov 2009

    During its research into the application of neuroscience in business, a New Jersey based think tank, The Center for Modeling Optimal Outcomes®, LLC (The Center) made an inadvertent and amazing discovery.

    The Center examined the neuroscientific dynamics of logic and emotion in decision making while researching neuroscience in business. They found unique corollary relationships between various brain chemicals (neurohormones, neurotransmitters, etc.). This apparent pattern led to a new path of research for the team outside of business. By looking at extensive scientific literature they discovered a cascade of hormones that emanate from the brain (hypothalamus). This same pattern of correlations was again apparent throughout the cascade. The group added a research biologist and started to test the pattern on genes (proteins). It remained consistent. The Center then called upon advisors from chemistry and physics to see if the pattern would apply in physical sciences.

    To the amazement of the group, it became apparent that this pattern of corollary relationships could be applied to scientific processes for maintaining equilibrium (homeostatic relationships) throughout all of science; from subatomic particles to chemistry as well as between biological substances.

    While the entire scientific community knows that homeostasis exists, this tacit knowledge has not been converted into a step-by-step, replicable model. The Center identified precisely such an explicit process.

    Challenged by several of The Center’s advisors, members of the team decided to test the efficacy of the model to determine if the disruptions that cause autism could be identified.

    After careful review of countless scientific studies, meeting with several renowned scientists to discuss their findings, and then applying the modeling process to numerous hypotheses, The Center’s Life Sciences group was able to formulate a scientifically verifiable model for the highly probable causal path of autism. Through the application of their model, it became apparent that autism is an outcome of several variables that, when the homeostatic relationship of each one is disrupted, a “perfect storm” scenario results in autism. The application of the model identified several of the variables that account for why boys have a 4 to 1 ratio of instances over girls as well as why not every boy is affected.

    While the scientific community will have to validate The Center’s findings, the model for assessing homeostatic relationships indicates the “trigger” behind autism is an imbalance between a pair of amino acid neurotransmitters; glutamate and glycine.

    According to The Center’s founder, William McFaul, a retired business person and not a member of the scientific community, “Because of its universal applicability, our Life Sciences group has already used the model as a tool to identify highly probable causal paths for several illnesses and disease entities. Autism was one of most difficult illnesses The Center had attempted to analyze.

    If it hadn’t been for so many parents insisting that vaccines were responsible for the condition, we might never have found the fact that the stabilizer in MMR and a few other vaccines is hydrolyzed gelatin; a substance that is approximately 21% glycine.

    It appears that, based on readily verifiable science, the use of that form of glycine triggers an imbalance between the amino acid neurotransmitters responsible for the absorption rate of certain classes of cells throughout the body.

    It is that wide-spread disruption that apparently results in the systemic problems that encompass the mind and the body characterized in today’s ‘classic’ autism.”

    He also added, “The use of our model indicates each of the disorders within Autism Spectrum Disorder (ASD) is attributable to different disruptions in homeostasis. We look forward to sharing our findings relative to each disorder with the scientific community.”

    According to Linda Oliver-Perrier, The Center’s spokesperson for their Life Sciences group, “The details of the disruptive process are somewhat complex and not conducive for explanation in a press release.

    McFaul added, “The Center is seeking to affiliate with academic centers to provide its model for homeostasis to the scientific community for use as a tool to enable researchers to identify root causes of illnesses and disease entities. The Center is a think tank that creates models. We are not an operating company with the resources to educate individuals or organizations on the application of the models we create.

    Source: The Center for Modeling Optimal Outcomes LLC
    Article URL: http://www.medicalnewstoday.com/articles/171457.php

  25. Versus says:

    I am not familiar with all of the states’ Medical Boards and their disciplinary procedures but my impression is that they are mostly inadequate. I am sure many doctors’ use of quack treatments never gets reported. If the doctor is reported, it can take months to investigate, then comes legal review, and finally taking the case before the Board. Most of the prosecuting attorneys in discipline cases work for the state, while the doctor can hire big legal talent to defend him/her. After the Board finally makes a decision, there is a right of appeal. I believe in due process protections for doctors whose licenses are threatened, but there needs to be some intervention that stops these dangerous practices immediately, otherwise the treatments continue in the interim.
    Compare this procedure to the arrest of an alleged criminal who, once arraigned, is either in jail or out on bail and can’t go around committing the same crimes, or, if he/she does, bail is quickly revoked and he/she will be in jail until trial.
    Compare it also to a civil proceeding, in which the plaintiff claims the defendant is causing irreparable harm. The plaintiff can seek a preliminary injunction to make the defendant stop his action until a full hearing is had on the matter. In some cases, the plaintiff can get the preliminary injunction without the defendant getting notice of the proceeding.
    Both of these criminal and civil procedures provide the defendant with due process. It seems then that it would not be unconstitutional to have a preliminary injunction-type proceeding or some sort of Board supervision before the disciplinary hearing so that patients would not be further harmed by the doctor employing quack treatments.

  26. RE: In CAM, though, every disease, disability and syndrome has a “treatment.”

    Always beware someone who ALWAYS claims to have a cure or solution to whatever your problem is.

    Sometimes the most intelligent person in the room is the one who says they don’t have an answer.

  27. storkdok says:

    @micheleinmichigan

    My son was diagnosed with autistic d/o at 17mos. He was so young, EI sent someone to our home until he was 2yrs. During that time he received 15hrs ABA/wk, and no STs were available. I read 3 ABA manuals and took a course in PECS and worked with my son as much as possible. With the PECS he immediately understood how it worked (15 min) and started asking for drinks and food. Our ABA therapist was from a nearby preschool based on ABA, and she was very good at teaching him joint attention. He learned a lot early on, and at 2yrs went to the preschool 30hrs/wk. His second therapist was also very good. He also was able to start ST 2hrs/wk and OT 1hr/wk and PT 1hr/wk. He continued to increase his skills until he hit about 3yrs, when he seemed to get bored. I had read more about developmental techniques and was interested in Floortime and SCERTS. I realized that the newest therapist he had was just not able to engage him well. We had a year where he didn’t learn very much and so I changed schools to one based on Floortime and SCERTS when he was 4yrs. He started to learn really fast, the therapists were able to engage him well and he enjoyed school there. After a year, he was able to go to Kindergarten mainstreamed (on time) and is now in the third grade. He receives ST and OT. He has a full time ed tech that is really backing off a lot this year. He loves school! He learns by watching the kids around him. He has done therapeutic horseback riding and is now in martial arts, as he doesn’t qualify for PT anymore, but certainly needs extra help in these areas. Years ago I learned how difficult emotional regulation is for him, and that is one area I have stressed working on (and is included in SCERTS). The other wonderful source we are now using is Michelle Garcia Winner’s Social Thinking (www.socialthinking.com), specifically his classroom teacher and ST, are using Superflex in the classroom.

    What I’ve learned is that much depends upon the therapist and how they relate to my child. No matter what method, it is about engaging them, using their interests in teaching them. You could have a very good ABA therapist and a child could learn a lot, one that isn’t so good, and the child learns much less. Same for Floortime, RDI, and for ST/OT/PT. Certain methods may work better for some children, depending upon their joint attention or lack thereof, interests, and personality. My son is pretty laid back about most things, so for him very early, I think the Floortime worked the best as a method to teach him. Now I use Social Thinking as a way to stimulate him to think for himself and about social situations.

    I do think EI helped my son very much. He was frustrated at not being able to communicate his needs and wants. By providing a structure to teach him, give him the tools he needed, he has flourished. He is a very happy kid, with a funny sense of humor, very unique. I just want to give him the tools he needs to navigate the world. Same as with my little almost 5 yr old NT son.

  28. micheleinmichigan says:

    storkdoc, thank you so much for your story. I think it will be really helpful to those parents with children who have recently been diagnosed with ASD. It sounds like you had good school EI and school resources available to you (or you managed to find them and more power to you.)

    My son has a speech disability due to cleft lip and palate and was diagnoses with one sided deafness a year ago. One of the reasons I empathize with kids with ASD and their parents is because I end up hanging out with them in waiting rooms a lot. It seems, at least in our area, that parents are seldom able to get good services unless they do a lot of research and pursue the most promising programs or therapists available.

  29. _Arthur says:

    Dr. Cannell is a quack. He advocates megadoses of vitamin D to cure hundred of of illnesses.

    His princeps experiment was when he gave extra vitamin D to the inmates of his psychiatric ward, and NONE catched the flu !!!!

    He wrote against the use of sunscreen, because, according to him, it prevents sufficient formation of vitamin D, which *prevents* cancer, still according to him.

  30. Anne says:

    Regarding biomedical treatments for autism, has anyone seen Generation Rescue’s grant program for biomed treatment? It’s only available to families who have not yet tried alternative treatments.

    The deal is that Generation Rescue provides a 90-day “grant” that covers two visits with a “New Generation Medical Doctor” chosen for you by GR. “New Generation Medical Doctor” means an MD, chiropractor, nutritionist, NP or “other health professional.” You have to agree that “I have no choice in this matter and cannot change the assigned doctor.” You are required to implement an “ASD diet,” take before and after pictures, and keep a daily journal. GR does NOT pay for lab tests, blood work, or supplements recommended by the “New Generation Medical Doctor.” If you drop out of the program, you pay the fees of the “New Generation Medical Doctor” that GR selected for you and return anything sent to you by GR at your cost. All of these terms are in the application for the grant, which can be found on the GR site here:
    http://www.generationrescue.org/pdf/rescue_family_grant_application.pdf

    I wonder what this is all about. Is somebody conducting a study without saying so, or is GR just generating some new business for certain health care practitioners? Something about this program doesn’t seem right to me.

  31. oderb says:

    David Gorski – You state that there is no good evidence to support Dr. Cannell’s argument, yet you still refuse to rebut in specific terms his argument.

    That suggests to me that you can’t rebut or critique his argument.

    And others scorn the belief that major illness can be prevented in part by adequate levels of D, and label those who make such claims as quacks.

    As one example of many that well known nest of quacks at the Canadian Cancer Society in 2007 recommended that people take D to prevent cancer.

    And to Scott. So your argument is that if you can’t find the references that’s ipso facto quackery. That’s quite a scientific statement…(And by the way after many of the paragraphs in Cannell’s article are clickable icons each of which pop up a reference. A ten year old would have known to click on the icon.)

  32. storkdok says:

    @michelleinmichigan

    It hasn’t been easy and it didn’t fall into my lap.

    It took us a few months of reading and talking to therapists for us to realize that if one of us could stay home, my son could have much more consistency. We had a nanny at the time, but naturally, she was not motivated to learn how to do the techniques so that there was consistency throughout the day. We decided it was best for my son if I retired, as a 2 physician family call schedule (OB and Anesthesia) was 2/3 nights on call, with no family nearby to fill in if we both got called in.

    So I started reading the manuals and learning the ST and OT and PT techniques to do throughout the day. I also have gone to many conferences to learn, like SCERTS, Floortime, Social Thinking, specialty conferences for ST. I have been able to take that knowledge and advocate for specific services for him.

    But it hasn’t been easy dealing with EI or the school system. They don’t have money, so I had to learn how to advocate effectively for the services that he needed. I had to get a lawyer for Kindergarten, because the school system said they only offered half day for any student and wouldn’t consider full day for him. My lawyer is probably the best educational law attorney in the Northeast, he argues in the federal court system and won a landmark case for a girl with Asperger’s Syndrome where the school had to address her social needs, not just educational. ;0) I record every meeting and have a case manager (his independent services coordinator), who has know him since he was 2yrs old, come with me to meetings/IEPs. I have memorized “Wright’s Law” (a really good resource for educational law rights and how to work with the system). I have a whole new lingo I use for education now. Medical knowledge doesn’t help squat in dealing with the educational system.

    We’ve had some really great therapists, and some not so good, and two downright terrible therapists that we fired (funny, 7 other parents fired them too). I have been treated mostly very respectfully, but a few times some therapists were arrogant and condescending, one even started shouting in an IEP when I asked if my son needed another hour a week of OT because he hadn’t progressed in a year and actually was a year more behind, she stormed out of the meeting. One OT said I shouldn’t expect much from my son because, after all, he’s autistic, so he would probably never really need to write (low tone, couldn’t hold a pencil/crayon at the time). I just move on and find people who love their work, love my son and have high expectations for him. BTW, he not only writes now, but he is the top in his class in cursive writing. His low tone makes it difficult to write more than a few sentences, his hands get tired, but he also loves to draw. :0)

    I’ve also had mostly good experiences with physicians, but not always. The only pediatric GI group in our state blew me off when he was 2 yrs old and still had diarrhea more than 15 times a day for his whole life. I looked up who was doing research in the Northeast and found Dr. Timothy Buie in Boston, and he has been wonderful. My son was diagnosed with inflammatory colitis and severe gastritis that is under good control now for many years. We have a wonderful developmental pediatrician, I also see her at many conferences that I go to, we have a very good relationship, as we do with our general pedi and a local neurologist.

    We have our challenges, but life is good!

  33. David Gorski says:

    David Gorski – You state that there is no good evidence to support Dr. Cannell’s argument, yet you still refuse to rebut in specific terms his argument.

    That suggests to me that you can’t rebut or critique his argument.

    I love it when advocates of unproven medical claims shift the burden of evidence.

  34. daedalus2u says:

    oderb, you said ” I believe the most promising explanation of the etiology of autism is from Dr John Cannell of the VitaminDCouncil.org.”

    This simply shows that you don’t know very much about autism and haven’t checked the simple obvious misstatements in the paper. The website is a crank site. It links to quacks and anti-vax nuts who say that good nutrition will protect better than a vaccine and to not vaccinate for things like MMR. That is dangerous quackery.

    Why do you insist on rebuttal from Dr Gorski? What about the gross errors that I pointed out? No excess in autism among black populations is very good evidence that low vitamin D does not cause autism. Why don’t you ask Dr Cannell to explain why he misquoted the studies and falsely claimed there is excess autism among blacks? Why don’t you ask him why he believes a single crank paper by quacks saying people with autism don’t excrete heavy metals instead of the entire peer reviewed literature on heavy metal physiology?

    I suspect the answer is because that single cherry picked quote supported his belief and the entire peer reviewed literature on heavy metal physiology didn’t. That is not how real scientists do science or how real doctors practice medicine. That is how pseudo-scientists and quacks do marketing to support their scams.

  35. David Gorski says:

    Actually, Dr. Cannell’s citation of vitamin D research very much reminds me of the misuse of research by the autism biomed movement:

    http://www.chicagotribune.com/health/chi-autism-science-nov23,0,240420.story

  36. trrll says:

    If it hadn’t been for so many parents insisting that vaccines were responsible for the condition, we might never have found the fact that the stabilizer in MMR and a few other vaccines is hydrolyzed gelatin; a substance that is approximately 21% glycine.

    It appears that, based on readily verifiable science, the use of that form of glycine triggers an imbalance between the amino acid neurotransmitters responsible for the absorption rate of certain classes of cells throughout the body.

    Perhaps we need to start providing education about basic principles of pharmacology and biochemistry at the high school level. It doesn’t take more than a very elementary level of knowledge to realize how incredibly implausible it is to suppose that a tiny amount of a substance like glycine or formaldehyde, which are normally present in enormously larger quantities throughout the body, will somehow have dramatic effects on the body, whether for good or ill. What conceivable physiological mechanism could explain such an effect?

  37. micheleinmichigan says:

    storkdok,

    I thought having our EI SP throwing her cell phone across the room when she was testing my son was bad, (she was having a falling out with her sister via cell.) No one actually yelled at me, though. We did have a struggle getting adequate speech for our son. The classroom settings available were not appropriate for him (and he didn’t qualify). The twice weekly 20 mins wasn’t adequate and non of the SP had experience with cleft lip and palate kids (although we were told before that they did).

    It wasn’t until he was diagnosed with the hearing loss and we found the district (five city) program for HI that things started looking up. My son now has a full day program with a really great teacher, speaker system, noise control and daily speech and audiology. The SP on staff even has experience with CLCP kids. My son has made huge progress going from barely putting together 3 words and only able to pronounce m,b,y and vowels at age 4 to telling stories with a lot more consonants at almost 5. and he’s so excited about talking. It doesn’t look like he will speak intelligibly enough to communicate in mainstream kindergarten, but hopefully he will join our neighborhood school in 1st or 2nd grade.

    The funny thing is that my mom was a teacher and principle. I thought I had a pretty good angle on school stuff. It wasn’t until I started dealing with all of this that I realize how deluded that was.

    Sorry, I know this is off topic. But I guess my point is there are a variety of programs for kids. I have no idea how evidence based my sons program is (the deaf and hard of hearing community have their own controversies), but the staff is excellent and they really know the kids and what works by observation. In this case, trusting them has worked much better than any information I could find online (SBM or not).

    But when it comes to surgery choices or medications I expect a provider to be able to show me evidence to support their recommendations.

    Also, I love Wrightslaw, I’m always recommending From Emotions to Advocacy.

  38. storkdok says:

    @michelleinmichigan

    Glad to hear your son is progressing! ;0)

    There are no real good statistics on most of the autism therapies. A good book by Michelle Garcia Winner looks at evidence for teaching social skills:

    A Politically Incorrect Look at Evidence-Based Practices and Teaching Social Skills

    She really lays it out there. It is a good overview for parents of spectrum kids.

    Hope things continue to go well for you and your son!

  39. Chris says:

    storkdoc:

    We decided it was best for my son if I retired,

    I know of an eye surgeon doctor who left her active practice because her autistic son needed her. Last I heard, their family was moving to San Luis Obisbo, CA because her doctor hubby got a good hospital gig there (plus it had a good program connected to Cal Poly for her son).

    I quit being an engineer to take care of my son due to his medical needs. Then there was the school issues. It would not have ever been possible to hire some one else to do it. I spent an entire summer (between hospitalization) calling the school district on their “Childfind” program!

    I also know of another engineer mom, like me, who tried to go back to work, but had to quit again to deal with her disabled daughter (not autism, but the issues are similar).

    Sometimes life throws you a curve ball, and you have to adapt. I am presently trying to get back to work, but it is hard.

    Be assured you are not alone.

  40. storkdok says:

    @Chris

    Thanks for sharing that! I am very pragmatic about life, I have no regrets being home for my kids. I’ve started doing a little teaching, which is fun.

    Best to your family!

  41. chaoticidealism says:

    I am autistic and was subjected to a few of these treatments as a child… they did nothing to help me. What would’ve helped is actually getting a evaluation, instead of switching schools all the time and eventually homeschooling just so nobody could “label” me, and actually teaching me the stuff I needed to know. I mean, I’m doing OK now; a psychiatrist I had managed to catch the missed diagnosis (talk about an “aha!” moment), and I’m learning a lot of what I should’ve learned as a kid, had I had people willing to teach me instead of just stuffing pills into me (current project: How to cook for oneself without burning the house down and/or eating nothing but egg sandwiches!).

    What frustrates me about all of this is the psychological impact this has to be having on those kids. Autistic doesn’t mean stupid; and I think they’d know very well when their parents are saying that having autism is unacceptable, that you have to get rid of it or you won’t be the child they want. It’s very sad to grow up being told that you’re sick and defective, and trying to be as normal as possible to please your parents. For all but the very mildest cases, this is impossible; it’s just being set up for failure, and being asked to deny what is basically a part of yourself, disability or not, to be who your parents want you to be.

    What’s more, it completely robs you of pride in your accomplishments. Whenever you learn something–and autistic people do learn, especially given a friendly environment and/or a good teacher–nobody says, “Hey, look what she’s learned! I’m so proud of her!” No, it’s all, “Hey, the chelation therapy must be working!” And the kid stands there with her newly tied shoelaces or her legibly printed name and gets completely left out of the equation. Everything gets blamed on whether or not the right therapy is being used; the presumption is that the kid is nothing but a passive recipient of whatever therapies they’re being subjected to at the moment, and doesn’t have free choice nor a personality of their own nor opinions or feelings. The idea that everything you do is just a manifestation of either your autism or a sign that the biomed is working is so very invalidating that I’m surprised we haven’t all given up on the world and gone to find a corner to rock in, like they expect we should be doing.

  42. Zoe237 says:

    Thanks for sharing your knowledge and stories.

    I read in the paper yesterday that the journal “Pediatrics” published this month a study (randomized controlled) showing promising results from an early intervention therapy program called “Early Start Denver Model” that was contrasted to the ABM talked about above (or I should say, it adds to it).

    http://www.nlm.nih.gov/medlineplus/news/fullstory_92437.html

    Again, I’m glad there is so much research being done, because I’m guessing that pseudoscience tends to flourish in places where science doesn’t have all of the answers (yet). I’ve never had a chronically ill child, but I imagine it must be difficult to do nothing (or an ineffective “something”). I really place the blame on “professionals” who should know better, but continue to promote these biomed “treatments” and profit off of parents’ fears and hopes for their children.

  43. provaxmom says:

    Funny, I had the opposite problem. Shortly after my son’s Dx, I took a job with much less stress, better hours and a 55% pay cut……all so I could spend more time with my son. What his therapists and I soon realized is that he actually does much better at daycare than he does when he’s home with me. Being around kids/peers all day is just better for him than being home with me. Oh well, at least I have much less ‘mommy guilt’ about taking him to daycare.

    chaoticidealism-thanks for your honest post. It certainly gives me much to think about as a parent of a special needs child.

Comments are closed.