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The evidence that dare not speak its name

October 6th, 2007 · 19 Comments · Kudos

Susan Jenks at Florida Today gives us an informed, thoughtful piece on Florida Tech’s commitment to empirical evidence, including this enlightened passage:

“We want to educate the public about autism and the types of treatments that are known to be the most effective,” said Mary Beth Kunkel, dean of the College of Psychology and Liberal Arts. “One of the hallmarks for our center is we are committed only to treatments with empirical support.”

That means the university does not intend to offer still-controversial biomedical therapies some parents swear by, such as nutrition and vitamin supplementation; chelation therapy to remove mercury and other metals from the blood; and hyperbaric oxygen, to improve circulation to every area of the body, including the brain.

Nor, Kunkel said, will there be any talks about thimerosal, the mercury-based preservative once routinely put in children’s vaccines, but now a rarity, which remains at the heart of a fierce debate over its role in autism’s development.

“Research tells us now mercury is not related to autism, but it is still an issue with some parents,” she conceded. “It’s a major controversy.”

Jenks’s story has drawn the ire of parents who count on unproven treatments to help their autistic children, including a long, rambling note from “Bev” who says autism and other developmental problems are caused by vaccines, pollution, food coloring and preservatives. Any journalist who has used “evidence” and “autism” in the same sentence has heard from the Bevs of the world. These well-intentioned but misguided parents actively seek information from anti-vaccine groups on the internet, and form beliefs which are further reinforced by lax, uninformed reporting in the mainstream press.

For example, a Miami TV station recently brought us the story of a family who took their three-year-old autistic daughter to Costa Rica for stem cell therapy.

Here’s the lead-in:

An autistic girl from South Florida traveled to Costa Rica for what her family is calling a life-altering treatment. Since having adult stem cell therapy she’s talking and interacting like other kids. Seven’s Richard Lemus shows us how this is All For Autism.

These unverified anecdotes, piled one on top of another, reinforce false beliefs that autism is curable, but that evidence-based doctors are too corrupt, lazy, or arrogant to take notice. The scientific illiteracy and wishful thinking is enabled by the internet, and instant communities of like-minded people who share anecdotes, beliefs, and speculation. D-list actress Jenny McCarthy tells adoring fans that the she turned to the internet right after her son Evan was diagnosed with autism. That’s where she “learned” that autism is treatable, and that autistic children can fully recover.

It’s easy for reporters and editors to feel caught up in the anti-vaccine hysteria of some readers. Journalists want to be fair, and unbiased, but too many times they split the baby between science and pseudoscience. What to do?

The safe answer is to rely on real evidence backed by empirical data where it exists. The scientific method emerged 400 years ago in response to the Bevs of the world, except they were called His Holiness or Monsigneur. If you’re going to be accused of bias, at least make it something worth being biased about. It’s better to shill for Galileo than a Costa Rican stem cell therapy clinic.

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19 responses so far ↓

  • 1 Michelle Dawson // Oct 6, 2007 at 10:33 am

    Lovaas (1987) did not involve randomized assignment to an experimental and a control group, much less to three groups. Lovaas (1987) did involve, as an essential component of the treatment for the experimental group, the use of contingent aversives.

    This can easily be verified by reading the study (which would also reveal that the number of children involved was not 60).

    In contrast, the only existing randomized controlled trial of a comprehensive early ABA-based autism intervention was largely a failure (Smith et al., 2000, 2001–don’t forget to read the errata). That would be the only RCT in 46 years of research into behaviour analytic treatments for autism. This study isn’t mentioned at all. So much for the “gold standard.”

    And so much for “thoughtful” and “informed.” More like biased and misleading. Autistics deserve better. Maybe someone can ask Dr Wilder about the empirical evidence (from controlled trials) supporting his “the earlier… the better” slogan, even if “the better” reflects the usual behaviour analytic standards.

  • 2 Nicki // Oct 7, 2007 at 8:03 am

    Oh, I couldn’t agree with you more.
    For those of us with a medical background and who do the research, it is so disheartening to hear parents who are in pain AND denial, never talk about genetic predisposition.
    They are doing a disservice to all of us whose children are not going to recover. As for Jenny McCarthy, she has only made thousands of parents feel even more guilty when her child was probably one of the four percent who have spontaneous recoveries.
    While I agree with many of their premises, show me the science.
    A mother who has been there, done that.
    Nicki

  • 3 Ms. Clark // Oct 7, 2007 at 9:54 pm

    Autism science is a real mess. There’s very little that is very good science with good underpinnings of both facts and ethics, and what is there gets ignored quite a bit.

    What is promoted is almost 100% nonsense or worse., outright lies.

    ABA as promoted by Lovaas and others is quackery as much as chelation for autism is quackery, since it doesn’t have the scientific underpinnings that are claimed for it, and since it makes promises as gross as any quack ever could promise (do enough ABA and you get your kid back, or you transform a child who was born autistic into a non-autistic).

    These topics are deep and hard to grasp. But I hope the reporters will try to put some time into revealing what is really known about autism and not keep repeating old-wives tales about autism.

    It’s unfortunate that the reporters may have to face the ire of the “Bevs” of autism, and not only their ire, but their heart-wrenching stories which may or may not be accurate, and seem to be more often inaccurate or grossly misleading but are told for effect and to get sympathy.

    As a mom, I realize that raising a special needs kid can be very difficult, lonely, etc, but I don’t feel the need to hammer any statement of mine home by repeating some harrowing tale of how autism has done this or that to my family. But it’s very effective, how can one ignore a distraught mom who can barely get out the words, “look… what… you’ve… done… to … my …. baby!” between sobs. I am convinced that **some** of the moms who do this on camera or for a microphone have been told how to deliver such performance by their personal-injury lawyer.

    Speaking of Jenny McCarthy, she likes to blame her son’s autism for her divorce (and reporters lap this up from what I’ve seen) and she says that there’s an 80% divorce rate among parents of autistic kids… but what’s the divorce rate for airheaded ex-Playboy centerfolds who “date” other people while married? I’m guessing it’s pretty close to 100%. How handy her son’s health problems (seizures) and autism are to use as scapegoats for her and her husband’s immaturity and lack of comittment to each other.

  • 4 Bev // Oct 8, 2007 at 5:51 am

    Hmmph! How dare this person abuse the name “Bev”!

  • 5 Club 166 // Oct 8, 2007 at 7:54 am

    As a physician and father of an autistic child, I am aware of no other condition for which so much conjecture, wild unfounded claims, and fraudulent ‘cures’ has been allowed to go on for so long. One would think we were living in the 15th century, and not the 21st.

    There is plenty of blaim to go around. The bulk of the blame rests with those who would perform pseudo-scientific studies to ‘prove’ that their cures work, and continue to push false hypotheses and cures long after real science has proven them wrong. These are joined by those who would spin conspiracy theories of why and how the government, big pharma, and the tri-lateral commission are all scheming to spread autism.

    The media shares some blame in covering ‘controversies’ in autism as if the real science and fake science had equal standing. The public deserves better from ‘investigative’ reporters.

    And finally the medical community is partly to blame. A few formerly bonafide medical practitioners get sucked into believing the hocus pocus theories that are put out there, and don’t bother to critically read the literature. Fringe medical practitioners that can’t make money in a legitimate fashion in medicine may use their medical degree to make some easy money from vulnerable parents by providing quack treatments. Both serve to lend ‘credibility’ that there is any controversy as to the causes or effective treatment of autistics.

    I’ve left lawyers off the list. Lawyers certainly help to propagate some of the specious arguments and wild untruths that are out there concerning autism, but they do that about so many other things, too. I don’t think that the legal issues are one of the MAIN reasons that all of these wild theories persist. I fully expect the wild theories to continue long after the litigation in the US vaccine court has ended.

    Joe

  • 6 Harold L Doherty // Oct 8, 2007 at 9:57 am

    Evidence based? You are off to a bad start with the standard Michelle Dawson anti-ABA diatribe and commentary by her followers. You should do some research on what evidence based approaches to health issues really means if you are going to dedicate a blog site to the concept. Linking to Neurodiversity sites, and promoting the views on those sites, will simply result in another Neurodiversity ideology site.

  • 7 Another Autism Mom // Oct 8, 2007 at 10:58 am

    Harold, autism blogging is a small world, you’ll eventually meet the same people in all blogs, so why not try to be a little more diplomatic and welcome Autism News Beat to the blogosphere on his first post, before bashing his efforts? People are free to comment wherever they choose, whether you like them or not.

    At this point I’m a little tired of the evidence-based x DAN/biomed controversy. It didn’t take long for me at all to realize DAN is quackery. However I know there are parents of newly diagnosed children starting their research on a daily basis, so the repetitiveness of the message, the constant quackery watching, has an important purpose.

    One thing I’d like to read more about on news and blogs about autism is the exchange of ideas and methods for teaching autistic kids to improve their language and school skills, for instance. This is one thing I get on a couple of discussion groups, not as much on the blogosphere.

  • 8 VAB // Oct 8, 2007 at 11:46 am

    If we are going start sorting the evidenced-based grain from the speculative chaff (which is very much needed) one notion that we need to debunk is all that nonsense about people with autism being incapable of loving, learning and living in the world. If parents did not get overwhelmed by this dire claptrap, they would be less likely to seek out miraculous foot baths. Most of these misguided parents just want their kids to be happy and loving. If they knew that autistic people can be happy and loving without being “cured,” I bet you’d see a lot less panic out there.

  • 9 Joseph // Oct 8, 2007 at 1:32 pm

    If someone does not understand what evidence-based means, that would be Harold. Would the FDA, for example, approve a drug based on a non-randomized trial with no blinding? How about 100 such trials?

    And Harold, that Neurodiversity advocates tend to be pro-science is neither here nor there. It’s not surprising that a science-based autism blog would link to Autism Diva and other blogs like that. There’s no requirement that if you’re pro-science in the autism community, you must also be pro-neurodiversity.

  • 10 Michelle Dawson // Oct 8, 2007 at 4:29 pm

    Hi Mr Doherty,

    While this appears to be annoying and unacceptable to important and influential “autism advocates” such as yourself, criticism is an essential aspect of science, as is accurate reference to primary sources.

    Everything in the post I made above (including the foundation for the question for Dr Wilder) can be verified by reading the peer-reviewed literature. But it seems that you judge at least some of the major papers in the ABA literature in autism to be a “diatribe” that should be censored.

    That is, you are forcefully opposed to, and determine to destroy the reputation of, anyone who has the gall to even mention what is reported in the peer-reviewed literature–unless it is something you agree with.

    This is all very helpful in illuminating the standards and complex needs of Canada’s important and powerful “autism advocates.”

  • 11 isles // Oct 8, 2007 at 9:59 pm

    I was pleasantly surprised by the story about the Florida clinic. Professionals not bowing and scraping to the squeaky wheels of vaccine hate! How novel!

  • 12 Schwartz // Oct 8, 2007 at 11:32 pm

    Club166,

    I think a lot more blame should go to both the medical and scientific community on this one. If the scientific/medical community didn’t have so many bad studies of their own, or they would address the major acknowledged conflicts of interest, they might be able to stem the tide of the pseudo scientists.

    As it is, they still continue to publish and then support poor studies. Only years later do they sometimes admit the problems, but only after plugging the next study. That does not inspire any confidence in the community or in the process.

  • 13 Schwartz // Oct 8, 2007 at 11:36 pm

    Joseph,

    “If someone does not understand what evidence-based means, that would be Harold. Would the FDA, for example, approve a drug based on a non-randomized trial with no blinding? How about 100 such trials?”

    The FDA approves drugs that have not been adequately tested for safety and efficacy, so you should be careful with that argument.

    They also approve drugs for use against populations that were never tested during trials,. They also approve vaccines all the time without testing for safety against placebo.

  • 14 John Fryer // Oct 9, 2007 at 9:20 am

    Hi
    Welcome to the fray.
    Fifteen years ago I met my first autism child and felt lost. There is absolutely nothing to show why the person has learning problems or how to overcome them.
    Chemical illness is for the most part incurable. For this reason we need to know what the chemical is and how to stop it.
    Fifteen years ago many syndromes were of unknown origin. One by one they turn out to be chemical related. Guillain Barre Syndrome and Reyes Syndrome etc.
    There is no reason to suspect that autism will be any different. There are just too many different types for it to be anything but environmental.
    Mercury is still (2007) in childrens vaccines so how can we do any head counts yet to see if it is going down?
    And how can we blame it if it is protected from blame?
    John Fryer Chemist

  • 15 Joseph // Oct 9, 2007 at 10:09 am

    The guy posting as Kev is clearly John Best (or some other troll) impersonating Kev. Over at Blogger, that’s a violation of TOS. I think it’s sufficient grounds for removal of the messages.

    Ed., Done!

  • 16 navi // Oct 9, 2007 at 4:34 pm

    sigh.

    thimerosal has been largely reduced in most vaccines in the US as of 2002. A few vaccines do still have it, such as the flu vaccine.

    Frankly I’d like to see a study of the percentage of children with adverse reactions to the vaccine that do and don’t have autism. Adverse reactions are extremely rare, but do happen and it seems everyone who is convinced those naughty vaccines caused autism has a child that got violently ill supposedly immediately after getting the shot (my son didn’t, I don’t think vaccines caused his autism. But then he has bipolar disorder and adhd in his family which are both somewhat genetic, so maybe I’m more inclined to believe its genetics than most. I also have a child that hugs me to the point it’s annoying sometimes, so maybe that’s why I’m not shocked and worried as well.

  • 17 Schwartz // Oct 9, 2007 at 8:54 pm

    Navi,

    Perhaps genetics, environmental factors, virus’ or even various combinations of the above can result in the variety of conditions we call Autism. Why does there have to be one cause?

  • 18 Regan // Oct 21, 2007 at 5:45 pm

    “…There are just too many different types for it “(autism) “to be anything but environmental.”

    At this point the safest thing may be that there are too many types for it to be one or the same thing. Genetics might matter in shedding light not only on direct causation, but on collateral physical effects, reactions and ailments. Just how I see it, since some things that appear to be significant issues of some kids on the spectrum are not my kid’s, and vice versa.

  • 19 Joanna // Oct 28, 2007 at 6:54 pm

    I am a mom, trying to sort out good, unbiased, information. Maybe I didn’t pay enough attention during my public school science classes, but what is empirical evidence, and why is it important? If I were to post a link to a study on my own blog (not that I have one) and wanted to list the ways the study met the standards of ing empirical evidence, what standards would I list? Is this information generally included in any published report? Would those standards include revealing the funding source of the study, and/or the other financial interests of any funding source? Thank you in advance for clarifying the issue.

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