Respectful Insolence

I was thinking of calling this post Jenny McCarthy and Julie Deardorff: Two crappy tastes that taste crappy together, but I’ve already used that joke with Jenny McCarthy and Oprah Winfrey. Besides, Julie Deardorff isn’t nearly as famous as Oprah, although, as I’ve discussed before, she’s probably even more credulous than Oprah towards the lastest dubious feel-good story about autism. Of course, this means that Deardorff and McCarthy are custom-made for each other, and, unfortunately, the antivaccination columnist for the Chicago Tribune has finally hooked up with the former Playmate of the Year who thinks that her “mommy instinct” trumps science about autism.

The result is predictable, and grating to anyone with an evidence-based approach to medicine, an article in The Chicago Tribune entitled Jenny McCarthy touts autism hope against tall odds.:

Actress and comedian Jenny McCarthy was working on her latest book one Sunday when her 4-year-old son wanted to talk. He was so chatty — and distracting — that McCarthy finally said, “Evan, can you please just stop talking for a whole five minutes today?”

Then she covered her mouth with her hand. “Wow. Flash back in time and think about how I had wished and prayed to say that to my kid,” she wrote in her best-selling memoir, “Louder Than Words: A Mother’s Journey in Healing Autism” (Dutton $23.95). “I got down on my knees and said, ‘No, Evan, Mamma made a mistake. You can talk and talk and talk and talk as much as you want, OK?’”

It’s a moment most parents of children with autism only dream about. But McCarthy’s current mission in life — and the impetus behind her fourth book — is to use the Chicago native’s famously big mouth to spread an unusual message: There is hope. Autistic children can recover.

Of course, autistic children can “recover” to varying degrees. It’s long been known that some autistic children, even severely autistic children, can show remarkable spurts of development and even develop to the point where they can grow up and lead independent and productive adult lives. The question was never whether autistic children can “recover.” Rather, the question is whether any of the dubious “biomedical interventions” (interventions ranging from chelation therapy, to gluten-free diets, to hyperbaric oxygen therapy (HBOT), to all manner of supplements) can improve the chances of development to the point where autistic children can grow up to live independently, with the the corollary to these therapies being the claim that mercury in vaccines, vaccines themselves, or some undefined “environmental toxin” that can be eliminated or reversed by these therapies is the root cause of autism.

That McCarthy keeps spouting that same “message” indicates, more than anything, just how little she knows. Clearly, she doesn’t realize that autism is a condition of developmental delay, not stasis. Apparently, after getting the news that her son was autistic, she thought that without any intervention he would remain as he was when diagnosed. As has been extensively described by Prometheus, a significant percentage of children diagnosed as autistic will improve to the point where they “fall off the spectrum.” It is this observation that makes individual anecdotes about autism, testimonials like McCarthy’s, almost completely worthless in evaluating whether the interventions to which she has subjected her son are of any value whatsoever or had anything whatsoever to do with his apparent “recovery.” Deardorff, of course, is, like McCarthy, utterly incapable of understanding this:

Though he’s not completely “cured,” McCarthy credits much of his turnaround to alternative “biomedical” interventions that include nutritional changes, detoxification therapies, gastrointestinal treatments and dietary supplements on top of intense behavioral and speech therapy.

When McCarthy removed wheat gluten and casein (found in dairy) from Evan’s diet, she said he doubled his language and regained eye contact within two weeks. After treating his yeast overgrowth using antifungal medication, “his social development was back on,” she said.

Although these treatments don’t produce changes in every child, they’re considered normal protocol by the Defeat Autism Now! (DAN!) project, which brings together researchers and parents for biannual conferences. DAN! (autism.com) also provides contacts for the approximately 600 doctors in the U.S. who use complementary and alternative therapies to treat autism.

While I’m glad to hear that McCarthy’s son is doing so well, once again, there’s no evidence that the treatments to which she subjected him had anything to do with how well he’s doing. To determine if these therapies do anything would require randomized, double-blinded trials. The reason is simple. Children with autism do develop, and a certain percentage of them will improve so much that it appears that they have “recovered.” Without comparing two well-matched groups in a clinical trial, it is simply not possible to tease out whether or not any of these biomedical interventions actually improve the odds that an autistic child will improve.

But, advocates will say, these biomedical interventions work. We’ve seen them work. Once again, Prometheus explains, using a rather clever analogy called The Tale of the Lucky Stockbroker, just how such interventions can become so widely viewed as effective even if they are not. And, no, it’s not because these parents are lying or idiots (although some of them, such as Jenny McCarthy, clearly are idiots), but rather because it appears “on the ground” that they do work:

Evidence-based medicine is based on data. “Alternative” medicine has “alternative” data: testimonials.

So, what’s the matter with testimonials? They’re just people’s stories, right?

Absolutely! So are reports of alien abduction, Bigfoot sightings and pixies in the garden.

Are all of these people lying? No.

They’re just telling the truth as they see it.

Emphasis mine.

Moreover, when these parents band together in groups, the Internet making it easy for them find each other, they all reinforce each other’s belief that biomedical interventions work. Once again, Prometheus puts it well:

What happens to parents whose kids don’t get better? For the most part, they are encouraged – by other parents and by the practitioners themselves – to “keep trying”. They are also encouraged to pay close attention and to “think positively” – but they are never encouraged to doubt.

In most cases, parents who give up on “alternative” therapies simply fade away. They have enough going on in their lives that they don’t feel the need to “tell their story”. Especially when it’s not wanted.

It’s the same sort of thing I discussed many moons ago, not long after this blog first came into being, about breast cancer testimonials. In fact, the two phenomena are a lot alike. Long ago, I pointed out that many breast cancer patients are cured by surgery alone and that chemotherapy and radiation merely decrease the chances of the tumor coming back. For tumors that can be removed by “lumpectomy,” as long as no tumor is left behind lumpectomy alone can be curative, even in the absence of lymph node removal. Not surprisingly, when a woman decides after an excisional biopsy that diagnoses cancer not to undergo any further surgery, chemotherapy, or radiation in favor of “alternative” medicine and then does well, as a significant number of them will do, she will tend to attribute her cure not to the surgery but to whatever woo she chose instead of radiation and chemotherapy. (Women whose cancers recur and kill them don’t provide testimonials.) Similarly, Jenny McCarthy’s son very likely would have done just as well if she had done nothing other than the “conventional” therapies of intensive behavioral and speech therapy, but because she chose to subject him to non-evidence-based “biomedical interventions,” she attributes his improvement to them, rather than to just a normal spurt of development or to behavioral and speech therapy. This sort of error in reasoning, alas, is common not just in autism or cancer but in many other conditions that are treated with CAM modalities. Worse, not all of these biomedical therapies are benign, as the case of Dr. Roy Kerry, who killed an autistic child with chelation therapy two years ago and whose hearing is scheduled for this afternoon reminds us.

What’s even more disturbing is what McCarthy apparently thinks of autism. Indeed, her attitude is one reason that I brought up the breast cancer example:

“I want to be these women’s voices,” she [Jenny McCarthy] said. “When I was 20, I had a feeling I’d be an activist, but I always thought, ‘Please, God, don’t let it be breast cancer.’ Now I can’t tell you how much I wish it was breast cancer.”

That’s right. Apparently to Jenny McCarthy, having an autistic child is worse than having breast cancer. Why is it that the British get cool celebrity moms of autistic children like Emma Noble and we get twits like Jenny McCarthy?

Comments

  1. #1 Joseph
    October 22, 2007

    Autism, along with all other developmental delays, are a magnet for quackery precisely because of the reasons you outlined. There are 3 proposed homeopathic “cures” of autism: carcinosin, homeopathic thimerosal, and a surprising one, homeopathic secretin. My favorite woo of all time would have to be the Thought Screen Helmet.

  2. #2 isles
    October 22, 2007

    Speaking of homeopathic thimerosal, it’s funny how antivaxers like the concept of extremely small doses in the context of homeopathy, but when you’re talking about the extremely small amounts of thimerosal in “trace” thimerosal vaccines (those in which T was used in production but is then removed), all of a sudden they insist a single molecule can cause autism.

    I think there is light at the end of the dark tunnel (much like the space between Jenny McCarthy’s ears). She seems to get bored with causes pretty fast. Her son’s only 4 and already she’s gotten heavily into and then discarded one woo-ey belief (the crystal child thing). Maybe the sucking-up of the mercury moms will grow tiresome before too long and we won’t see so much of this bimbo blabbing about her University of Google degree.

  3. #3 makita
    October 22, 2007

    Although I didn’t know her name until after I had written this post, Jenny McCarthy is the celebrity I was referring to in my post from 9/25 http://everything-more.blogspot.com/2007/09/not-remarkable.html
    I did not even go into her thoughts on autism itself, simply addressing the fact that she has more money than any of us mere mortals will ever make, and can spend all that on her son. Not to talk about how she is making money off of his condition by writing books.

    One remark though, although she may not have expressed it well, I can understand where the statement about breast cancer comes from. I think (and maybe I’m giving her too much credit here) that she refers to the fact that she had rather be afflicted with something horrible herself, rather than see her son going through his struggles.

    Now, my son sadly will never be “normal” by any stretch of the imagination, so that may have something to do with how much I’d be willing to give up, if it would make him better. But that is all theoretical anyway. Would I truly give up myself, and thereby deprive my other kids from a mother?

    At any rate, the point was, that most parents can never afford the amount of therapy for their children that she could for her son. And sadly, many children, will never reach their full potential. Harsh reality of life.

  4. #4 Charles
    October 22, 2007

    Many years ago I was in the social sciences.. Ph.D. course work and all that.. I am still skeptical that autism is one entity so to speak , like chicken pox or a broken leg seem to be. I suspected then and still do, that we are only in the early, early years of understanding what these symptoms really are from a bio-chemical as well as psychological view point.
    Sure it is easy to beat Jenny up for her ideas.
    I suspect, in the long run, we will find, hopefully, a variety of approaches will lessen if not defeat the disorder and bring parents some peace of mind and “hope” for their children..

  5. #5 Lee Randolph
    October 22, 2007

    your rss channel doesn’t work. Humanities and social science. can you get someone to fix it please? It stopped working on the the 16th.

  6. #6 Uncle Dave
    October 22, 2007

    If you want to be on the front lines of the hysteria surrounding autism and parental susceptabilities, spend some time with a veteran Special Edcuation teacher some time.
    My wife has experienced some fine parents over the years that work very hard with thier child and don’t seem to be overly fixated on the suspected causes (these people also see some educational improvements without the diets and elixars – depends on the specific condition and severity of the child).
    Then there are the parents that fall in with the eye of nute and general caldron of alternative treatments. More often then not they are a real handful for the special education facilitator as well (quite a roller coaster of an experience to say the least). Even though this is new to them, they seem to know it all and are quite convinced of the veracity and depth of thier knowledge, as McCarthy demonstrates so well.
    Even if you are not a clinical researcher, or a CDC epitdemiologist (sp?), spend some time immersed in this subject matter as a special education teacher for 15 to 20 years, and it will become quite clear that a change of diet and vaccine exposure has as much to do with autism as it does to automobile accidents.

    The numbers don’t add up.

    Unfortunetly the scientific community needs to have someone rebut Ms. McCarthy that can match her eye candy credentials. Then and only then will we see a debate on Oprah.

  7. #7 Ahistoricality
    October 22, 2007

    I’m reminded of Han Feizi’s commentary on Confucianism:

    There was a farmer of Song who tilled the land, and in his field was a stump. One day a rabbit, racing across the field, bumped into the stump, broke its neck, and died. Thereupon the farmer laid aside his plow and took up watch beside the stump, hoping that he would get another rabbit in the same way. But he got no more rabbits, and instead became the laughingstock of Song. Those who think they can take the ways of the ancient kings and use them to govern the people of today all belong in the category of stumpwatchers! (Sources of Chinese Tradition: From 1600 Through the Twentieth Century 2nd edition, by William Theodore De Bary, Richard John Lufrano, p. 199)

    It’s such a wonderful metaphor for the altie method, as well.

  8. #8 Liz D
    October 22, 2007

    Excellent post, Orac.

    For those of you who think that these alternative methods “can’t hurt” I refer you to Dick Dalton’s excellent post, The Fleecing of the Autim Community

    Snippet:
    There is a never-ending supply of charlatans and snake oil salespeople hawking their potions and notions, and none of these are cheap. Unbeknownst to me at the time, Jane bought $12,000 worth of various extracts, mineral waters and such, plus ordered a myriad of tests. We didn’t have the money then and are still trying to pay off that credit card bill, 2 years later. In addition, she took money out of her retirement fund in order to pay for some of this stuff. By the time I found out, we were on the brink of bankruptcy.

    These frauds sell crap, preying on the concern of parents for their children. They guilt us by saying, “Wouldn’t you do anything to help your child?” When it doesn’t work, we are told we didn’t do it right which is shorthand for “we didn’t spend enough money.” I’ve seen the shit come and go. And everyone has something to offer…for a price. No one is giving this stuff away. They are impoverishing an entire class of people.

  9. #9 vjb
    October 22, 2007

    Ahistoricity’s comment reminds me that the airport security (TSA) folks are fighting the last shoe.

  10. #10 David Nieporent
    October 23, 2007

    When you read comments like McCarthy’s, don’t you just hear in your head, “Lisa, I want to buy your rock”?

  11. #11 Common Sense
    October 23, 2007

    “Even if you are not a clinical researcher, or a CDC epitdemiologist (sp?), spend some time immersed in this subject matter as a special education teacher for 15 to 20 years, and it will become quite clear that a change of diet and vaccine exposure has as much to do with autism as it does to automobile accidents.

    The numbers don’t add up”.

    How could you possibly say this? Explain yourself… You make absolutely no sense. For the record, are you the dufus who called a “gluten free” diet a starvation diet? I wouldn’t trust one thing that came out of your mouth… You sound quite ignorant.

  12. #12 Lucas McCarty
    October 24, 2007

    Heaven forbid that those who spend most their time with more developing special needs children than anyone else actually knows something about them right Sue?

  13. #13 Common Sense
    October 24, 2007

    “Heaven forbid that those who spend most their time with more developing special needs children than anyone else actually knows something about them right Sue”?

    What type of experience? A teacher? Maybe they know something or maybe they don’t… Do they know about biomedical concerns? Do they know about diet? Do they know about the vaccine controversy? Not necessarily. I wouldn’t doubt that they have the traditional methods for teaching the kids under control but anything else? Maybe, maybe not. Remember, this guy claimed that he considered the gluten free diet to be a ‘starvation diet’… that’s pretty ignorant.

    I guess that you believe that a pediatrician *knows* everything about a child’s diet and/or diarrhea issues, etc. etc… just by virtue of seeing and treating kids all day too, right? LOL!

  14. #14 Shiritai
    October 24, 2007

    Cool! So, under your criteria, you’re not qualified to speak.

  15. #15 Shiritai
    October 24, 2007

    That’s pretty funny, though, how quacks dismiss all anecdotes but their own. It’s yet one more symptom of their inability to use and apply logic.

  16. #16 Common Sense
    October 25, 2007

    “Cool! So, under your criteria, you’re not qualified to speak”.

    Hmmmm… not quite. Try again.

  17. #17 Calli Arcale
    October 25, 2007

    CS, it appears that your criteria for whether someone is qualified to speak is whether or not they agree with you. I find that very disturbing in someone who claims to be seeking the truth.

    If you truly seek the truth, you must renounce the conviction that you are right and be genuinely open-minded. Open your mind even to the possibility that you may not be correct. Let the facts lead you, not your emotions. Do not dismiss facts merely because they are uncomfortable to your convictions, and certainly do not dismiss the experience of others merely because it disagrees with your own. Take it with a grain of salt, as you should be taking your own experience with a grain of salt, because anecdotes alone are not sufficient to draw conclusions. But do not dismiss it out of hand.

    The truth is, no one has the whole truth. Therefore, to blind oneself to uncomfortable facts is to surrender any hope of ever finding the truth.

  18. #18 Common Sense
    October 25, 2007

    “The truth is, no one has the whole truth”.

    Perhaps you misunderstand. I *know* that we don’t have the whole truth… it is you nitwits (generally speaking) who claim to know everything and claim to have all the *science/truth* behind you (cough, cough).

  19. #19 HCN
    October 26, 2007

    Those of us you call “nitwits” actually will change our minds when presented with enough evidence. If perhaps you presented some real evidence instead of ad hominems we might actually give some credence to what you have to say.

    So tell us, what evidence do you have that autism is worse than breast cancer? Be advised that 17 years ago I went to a memorial of a dear friend who died of breast cancer… her daughters should be about 18 and 20 years old now.

  20. #20 Calli Arcale
    October 26, 2007

    Perhaps you misunderstand. I *know* that we don’t have the whole truth… it is you nitwits (generally speaking) who claim to know everything and claim to have all the *science/truth* behind you (cough, cough).

    *raises eyebrow*

    Do you really? If you are aware that you don’t know the whole truth, why are you so confident in labeling me a nitwit, or characterizing my position in such a way? Clearly, you are willing to take stands without really bothering to grasp the facts — even such facts as what positions other people actually hold on a subject. Given that, discussion with you would seem to be pointless.

    That is very sad indeed, because you appear to be a person with a great deal of passion and energy. Imagine how far that could take you! Instead, you have chosen to take a position and stick with it at all costs — all while accusing anyone who doesn’t agree with you 100% of doing exactly the same thing, even without bothering to determine what their position actually is. Very sad.

    Personally, I think medical issues are far too serious to turn them into “causes” requiring protest, because that sort of thing seriously clouds judgement. There’s no room for pride when it comes to things this important. The stakes are too high.

  21. #21 Michael Menkin
    November 22, 2007

    I hope you will be good journalists and get the correct information about autistic children wearing a hat lined with a conductive plastic called velostat which is made by 3m.

    My original post on autism stated that I had five autstic children who improved after wearing hats lined with velostat every night for 6 months. I stated that I would like to see if the hats were indeed effective and asked for volunteers to try the hat, which I make and send to people to try for free. It takes me four hours to make a hat and costs around $30.00. That is all what I originally posted.
    The autistic children who wear the hats are still improving. I have documentation on two of the children and the couselors who monitor the children are very interested in their improvement.

    My next move is to make hats and see if I can get a local organization interested in testing them with children.

    The basic concept you must understand is that the process of improvement is very slow. The children must wear the hats every night for about six months before any improvement is made. I failed with some autistic children because the parents could not get them to wear the helmets for any lenght of time, which is essential for any kind of progress.

    I do plan to get some scientific review of what I have done. If you have any positive comments, please email me at mmenkin@hotmail.com.

    I previously was a publications editor at the University of Washington Medical School, a public relations writer for the University of California’s Mount Zion Medical Center and a public relations writer for the Medical Division of the University of California’s Lawrence Berkeley Laboratory. I am currently a techncal writer for the Cabin Systems Divison of the Boeing commercial Airplane Company.

    Since you claim to be journalists, please get your facts straight. I’ve been a professional writer for 40 years. I try much harder than you do to get my information correct.

  22. #22 Michael Menkin
    November 22, 2007

    I hope you will be good journalists and get the correct information about autistic children wearing a hat lined with a conductive plastic called velostat which is made by 3m.

    My original post on autism stated that I had five autstic children who improved after wearing hats lined with velostat every night for 6 months. I stated that I would like to see if the hats were indeed effective and asked for volunteers to try the hat, which I make and send to people to try for free. It takes me four hours to make a hat and costs around $30.00. That is all what I originally posted.
    The autistic children who wear the hats are still improving. I have documentation on two of the children and the couselors who monitor the children are very interested in their improvement.

    My next move is to make hats and see if I can get a local organization interested in testing them with children.

    The basic concept you must understand is that the process of improvement is very slow. The children must wear the hats every night for about six months before any improvement is made. I failed with some autistic children because the parents could not get them to wear the helmets for any lenght of time, which is essential for any kind of progress.

    I do plan to get some scientific review of what I have done. If you have any positive comments, please email me at mmenkin@hotmail.com.

    I previously was a publications editor at the University of Washington Medical School, a public relations writer for the University of California’s Mount Zion Medical Center and a public relations writer for the Medical Division of the University of California’s Lawrence Berkeley Laboratory. I am currently a techncal writer for the Cabin Systems Divison of the Boeing commercial Airplane Company.

    Since you claim to be journalists, please get your facts straight. I’ve been a professional writer for 40 years. I try much harder than you do to get my information correct.

  23. #23 MartinM
    November 22, 2007

    The basic concept you must understand is that the process of improvement is very slow.

    You mean, just like improvement observed in autistic children who don’t wear silly hats? What a surprise.