A comment on an earlier post of mine by a woman named Lisa, who has a 5-year-old son with autism, led me to her blog, specifically to this blogpost. Lisa is attempting to raise money to pay for some exorbitantly expensive biomedical treatments for her son, and has delayed vaccinating her younger, neurotypical son for fear the vaccines are responsible for his older brother’s descent into autism. For some reason, Lisa took offense to a comment of mine on a BlogHer post, in which I stated that Jenny McCarthy’s cause – which includes her not minding if children get deadly diseases until they “green the vaccines”, whatever that means (and the meaning seems to change constantly, as suits Jenny and her antivax crowd) – disgusted me.
For some reason, and though the post Lisa commented on has no mention of Jenny or biomedical treatments (nor do any of the other comments), I’ve attracted the attention of the Biomed Mommies over at Babycenter. Looks like my callous disregard of biomedical treatments coupled with my being a conventional MD makes their hearts hurt. Apparently, healthcare practitioners and critically-thinking laypeople who express disgust at desperate parents being exploited by unethical MDs (and non-MDs) hawking false, unscientific and sometimes harmful ‘cures’ for very, very good money (I personally know a woman who confessed to spending a six-figure dollar sum in biomedical treatments) are “tak[ing] pure, shameless, unadulterated joy at gleefully kicking parents of suffering children while they are down and work tirelessly like dogs to get society to see us as Satan incarnate.”
Though I’ve addressed some of the myths surrounding vaccines and heavy metals (specifically, thimerosal and MMR) and autism in previous blogposts, apparently some of those answers need further elaboration. While I am sure those Mommies who are deep in the biomed (or even deeply in debt from the biomed treatments) will be reluctant to accept that their perception that the treatments are helping their children is incorrect, maybe this will help clarify things for parents who are thinking of using these treatments.
I would like to make very clear that I don’t have any intention of kicking parents of autistic children when they are down, nor want society to regard them as Satan incarnate. I see Jenny McCarthy as a foul-mouthed, boorish and totally uncaring woman (at least she’s quite uncaring of any children not her own) and I’m not sure she’s being entirely honest, perhaps even to herself, about her son’s diagnosis of autism (which may be in doubt) nor of his “cure”. But she is hardly Satan incarnate. Certainly I have nothing but sympathy for the children involved (and that includes Jenny’s Evan).
There are so many testimonials of parents who treated their autistic children with (insert your favorite biomed treatment here), and managed to cure their children of autism, or at least noticeably improve their condition. How can you say the treatments are bogus?
Because the only way to determine if a drug treatment is effective or not is by doing a double-blinded, randomized, placebo-controlled study. In the case of, say, evaluating a supplement as a cure for autism, that would mean giving a group of autistic children a supplement pill for a certain amount of time, and giving a similar group of autistic children a pill containing an inactive substance. The important point is that neither the doctors administering the pills, nor the parents or the children being treated know which type of pill they’ve been given until the experiment is over (that’s the double-blinded part).
It is expected that a significant percentage of children will improve noticeably despite having been given the placebo pill, because of the placebo effect. In order to convincingly demonstrate a drug works, you need to show a significant effect beyond that of the placebo – i.e., a significantly larger percentage of children receiving the actual supplement have improved than those receiving the placebo.
Secretin as a ‘cure’ for autism also looked very convincing to some as a result of anecdotal reports of autistic children improving after its use; however, it has become less popular after studies in the design mentioned above demonstrated that any apparent improvement was likely due to the placebo effect.
This testing has not been done in the large majority of current biomedical interventions (though I have to say that this study on hyperbaric oxygen treatment looks interesting; I’d wait for it to be replicated by another research team before pronouncing this as proof, however. UPDATE: I failed to notice Prometheus’ take on the subject. I guess we’ll have to wait even longer for a decent study!), or the studies existant are lousy (see this systematic review regarding the GF/CF diet in autism). So we have no way of knowing why a given child improved after receiving a treatment.
Another reason a child might appear to improve after receiving a supplement or any other intervention might also be due to the Hawthorne Effect:
When it comes to human behavior, almost any (positive) attention or intervention is likely to be somewhat beneficial. Between 1924 and 1932, some industrial psychologists and efficiency experts studied the Western Electric manufacturing plant in Cicero, Ill., to determine what interventions might lead to an increase in productivity. Increase the lighting, even a little bit? Definite improvement for a while. Shorten the workday? Definite improvement for a while. Lengthen it? Definite improvement for a while. Dim the lighting? Definite improvement for a while. It looks as if environmental alteration, especially if coupled with increased attention and perhaps expectation, often leads to change in human behavior.
Another very likely reason that children seem to improve after biomedical treatments is that autism is a disorder of developmental delay. Their developmental course is characterized by ups and downs, albeit progress will always be seen over time. And if an ‘up’ period happens to follow an intervention, it will naturally be attributed to whatever therapy the child happened to start at the time.
I implore you to read the story of Dr. Jim Laidler, an MD and father of 2 autistic children, who was sucked into the world of biomedical treatments, but ultimately came to his senses and realized these treatments were nothing but an exercise in self-deception.
But the alternative practitioner sent my child’s sample to a lab, and found my child was loaded with heavy metals! My child must be heavy metal poisoned!
There are a few labs used by the ‘practitioners’ who use biomed cures. the one I see mentioned most is Doctor’s Data, Inc. The lab uses hair analysis (always an unreliable test for toxic exposures) and applies incorrect normal values to urine tests – such as using chelator provocation to extract heavy metals into the urine before sampling a child’s urine and then applying the normal range of heavy metal levels in this urine to unprovoked samples.
Reporter Arthur Allen attempted to question the lab about these practices; he was unsuccessful:
Doctor’s Data did not respond to a request for an interview. An individual close to the company said there was no way to establish a base line for post-chelation samples, which might have been provoked by any number of different chelating agents, at varying doses. “The tests are ordered by physicians, so they can interpret the results,” this person said. “They do what they want with this information.” But copies of the reports, which chart the child’s mercury levels into deceptively shaded “elevated” and “very elevated” areas, are typically provided to both physicians and patients.
I might add that Dr. Laidler (the father of 2 autistic children mentioned above) attempted to test Doctor’s Data by sending them two urine ‘samples’ (actually distilled water and creatinine) which contained no mercury, in the cups the lab provided. The lab found different levels of mercury in the samples, both high.
My kids took biomed remedies and are doing a lot better than my friend’s/sister’s/cousin’s children who don’t! How do you explain that, huh, huh?
Since the evidence is piling up that autism is primarily a genetic disorder (though there may well be an environmental trigger as well; one such known trigger is none other than congenital rubella you know, one of those diseases we vaccinate against using the MMR), I’d say the main reason for that is because your children have your genes, and her children have her genes. I’m sure you can find families with children on biomed who ultimately do worse than the ones who aren’t.
I have to wonder if these mainstream doctors who are so high-and-mighty as this lady is are just jealous because “Western Medicine” is failing autistic children miserably so instead of admitting that there are simply things that they do not know or understand, they attack and demonize and claim that they are being “altruistic” whilst doing it.
This is a direct quote from the Babycenter thread. I don’t know, but I think it’s a lot more humble (and a lot closer to the truth, mind) for a doctor to admit s/he doesn’t know as yet what causes autism nor how to cure it, than to claim you know something that nobody else does – with no proof other than testimonials – and charge parents megabucks for the ‘cure’ that those Western Meanies won’t give you. Consider the case of Rashid Buttar, promoter of a supposed “chelating cream” (emphases mine):
It can be administered by pill or intravenously. But Buttar invented a liquid compound now made by the batch load in Gastonia. Buttar goes so far as to say his drops are the only successful autism therapy.
“This little bottle that helps the kids get better is the only thing that has been shown to conclusively get these kids better. Based on if you want to call it anecdotal or whatever,” Buttar said.
Dr. James Laidler once promoted chelation at conferences just like the ones in Charlotte.
“They were selling hope,” said Laidler. “For parents who are desperate, hope is a very addictive drug.”
Laidler is an Oregon M.D. and has two sons who were diagnosed with autism.
“Most of his improvement came after we stopped everything,” Laidler said.
No one would say mercury is good for kids, whether Buttar’s bottle of skin drops cures autism is another question entirely.
“Those folks have never even shown that it’s even absorbed through the skin,” Laidler said.
In a rebuttal to that comment Buttar said, “No, we haven’t done that. Why would I waste my time proving something that I already know is working innately?”
“So these parents, these desperate parents are buying expensive skin lotion,” said Laidler.
And he’s not the only one questioning the effectiveness of chelation. 6NEWS showed Buttar’s presentation to Jim Bodfish, a PHD and autism researcher at the University of North Carolina at Chapel Hill.
When asked if the treatment worked, Bodfish said, “At this point we have no evidence that chelation is a significant treatment.”
But Bodfish understands the appeal of a simple cause and cure.
“When there’s no known cause that’s this vacuum that opens up this black hole that allows snake oil salesmen to move in,” said Bodfish.
“If this is snake oil and what they’re doing is medicine, then I choose to practice snake oil. And I have no embarrassment with it,” said Buttar.
If that’s not a breathtaking exhibit of unadulterated hubris, I don’t know what is. All at the price of $150 per bottle that you need to use for at least 2 years…
How come you keep on recommending Dr. Offit’s book? Don’t you know he’s made millions off of his vaccine patent and has never treated a child with autism in his life?
Dr. Offit, unlike the clowns Jenny McCarthy associates with, has publicized his apparent conflict of interest (though his place of work no longer holds the patent on the Rotateq vaccine) and has chosen to donate the proceeds of his book to autism research. That’s far more than one can say of the heroes of the antivax, biomed movement: Consider, for example, the case of the truly disgusting Geier duo, who are happily making $$$ treating children by chemical castration with Lupron, a treatment protocol they just happened to try and patent. Would anyone have known about this if not for the immense efforts of the wonderful Kathleen Seidel? How about the obvious but unstated conflicts of interest common to all ‘therapists’ providing bogus autism treatments necessitating bank loans or second mortgages?
All this is, of course, secondary to the fact that Offit really knows more about vaccines than all of them put together, and provides an extermely accessible narrative of the evolution of the autism/vaccines controversy and the science disproving it.
Why do you care if I spend my money on what you consider useless supplements? At least I believe they’re doing something, and if not, at least I did something to help my child.
Besides the fact that I hate it when supposed colleagues of mine behave unethically and dupe innocent people out of their life savings (or even plunge them into deep debt), sometimes these unlikely, unproven treaments harm children. Sometimes they even kill them. It’s a tragedy to have a child die as a result of a necessary procedure; to die because of a bogus one is simply unconscionable.
Filed under: "natural" vs. artificial, Alternative Medicine, Risk perception, Vaccines |
Mainstream Parenting Resources 
I can’t even describe the depth of my anger at these manipulative, self-enriching, full-of-themselves quacks. They should just go away and leave the autism families alone.
Bravo! Great post. One point to add: every dollar that goes to quack treatments or yet another study trying to link vaccines to autism is a dollar that doesn’t go to finding real causes and treatments for autism.
Piling on to say, “well done!” The moral bankruptcy of many of these practitioners is beyond belief. The Geiers are deserving of a very special place in hell, not only for their abuse of families with autistic children, but also (IMO) for their fraudulent IRB, which was obviously concocted to bypass the regulations meant to safeguard clinical study participants.
I would invite your critics to read the latest entry by Kent Heckenlively at Age of Autism. He is perplexed by the ongoing “high mercury levels” returned by Doctor’s Data Labs, despite a blood-chilling array of bio-med treatments to which he has apparently subjected his daughter for a number of years, without managing to “recover” her to a point he finds acceptable.
This is something I often wonder about with devotees of alt-med who claim to distrust doctors and pharmaceutical companies because “they make huge profits” or some such.
Last time I checked, the herbalist down the street and the Reiki practitioner a few blocks away both charge for their services.
Wow, I just went over there and that’s one freaky, scary bunch of people. “Genetically flawed” = autism and “clinging to Western medicine” = thinking critically. Oooooookaaaay. Your post was great, and took on many of the sacred cows.
I have a 63-year-old brother with autism–one of those people that Jenny says doesn’t exist. Just found your blog–I’ll tune in again.
Sorry–I meant “not thinking critically”.
I’d be interested in a deconstruction of the word ‘biomedical’. It’s made up of two very science-y terms and yet it completely not evidence-based so it’s not scientific at all. Why is medical so wrong in this belief system but biomedical is a cure all? It is a construct of certain belief system, but I can’t put my finger on its allure. Seems like a job for some more lit crit skills than I possess.
Amazing post by the way.
BTW, I think it was Orac who described one of the most blood-curdling treatments. Some guy had his daughter’s spinal fluid injected with a potion of one sort or another. He had to go to Costa Rica to do it, since folks around these parts wouldn’t do it.
Orac’s my personal god. Way up there on that pedestal.
The problem I have with Orac is while he is 100% correct on the facts, he misses the bigger picture. He is almost a caricature of the unfeeling, arrogant and disrespectful doctor. It’s that stereotype that is driving a lot of people to the quacks. Doctors need to learn how to win hearts, not just minds. If people feel disrespected or condescended to, they will look for alternatives, regardless of the evidence.
Li, you are right–that’s why I love reading him. I don’t have to go to him.
It’s kind of sad to hear about people trying to make money off of miracle cures.
Kevin
Wonderful post, Esther. Great summary.
Excellent post 🙂
In defence of Orac, he is a caricature and nothing like the person behind it 🙂 Orac is a creature of pure logic and what you see at the blog is the frustration of a creature of logic being exposed to, well, bullshit 🙂
As for those mammas with their google phD’s I would offer a quote from another excellent blogger who once said ‘you cannot reason someone out of a belief they didn’t reason themselves into’. They won’t ever change their minds and the likes of Wakefield, Geier and Buttar – all exposed as being less than honest – are hero’s to them. You’re talking about denial on a grand well orchestrated scale.
‘you cannot reason someone out of a belief they didn’t reason themselves into’.
luv it, luv it.
By the way, I looked up “biomedical” because that really had me thinking there. The clearest and most boiled down definition of biomedical is the application to biology to medicine. Seems like a no-brainer, right? But the word has come into use mostly (I think) in the context of mental illness. So, for example, you would talk about a biomedical approach to mental illness–both the problem and the treatment would fall within the real of biology–biological disease, biological treatment–as opposed to other probably less popular models of mental illness today that say the brain can’t be reduced to a biological mass.
I don’t promise this is entirely accurate but I think it hits on some of the main points and one can see the relationship to the autism debate too. Certainly a lot of these quacks buy the disease model of autism. Certainly a lot of people with autism, including and especially those who espouse neurodiversity, don’t.
You know, I can see the appeal for neurodiversity when it applies to people with Asperger’s or other high-functioning autism. It’s a little harder to make a case that an autistic person is equally well-off as a neurotypical one if he needs to live in sheltered group housing for the rest of his life and will never be able to function independently in human society. That already, IMO, comes under the umbrella of disability, and you can hardly blame parents who try desperately to avoid that fate for their children….even resorting to the snake oil. But the fact is, at this point in time it’s necessary to accept that how autistic children eventually end up is something over which we have only very limited control.
Ah, but that, in my experience, is not what neurodiversity says or is about. My own child falls under the category of ‘severely autistic’ and I would never say xe is as well off as an NT child.
What I *would* say and what neurodiversity *does* say is that all people – regardless of the different way their minds are set up – have a right to be who they are. In this case to be autistic. In other cases to have Down’s Syndrome. In other cases to have manic depression 🙂 and still have rights as a human being. It shouldn’t be necessary for these people to be ‘cured’ in order for them to be listened to or taken account of.
“It shouldn’t be necessary for these people to be ‘cured’ in order for them to be listened to or taken account of.” – that should be a given – does anyone think otherwise?
What I’m asking, though, if medical science were to come up with a complete and genuine ‘cure’ for autism tomorrow – say, a medicine that turned autistic people into neurotypical ones or at least erased/alleviated some of the symptoms (like Lithium or Tegretol for bipolar disorder). Does neurodiversity mean a parent would choose to decline such treatment for their (severely) autistic child in order to preserve his/her neurological uniqueness?
Damn, hit the wrong ‘reply’ link. Sorry
Reminds me of the Olive Sachs essays, specifically about the fellow with tourette’s, once he got on medication he lost his flare for jazz drum and a couple of other skills we ‘normals’ don’t have and he did not like it at all.
I was thinking of Witty Ticcy Ray (that’s the story’s name in the book) too! Get out of my mind, girl! 😆
That said, I agree that a 100% total cure is probably a long way off, and I doubt a person can choose consciously to be or not to be autistic unless s/he’s experienced both states.
I am a web designer. I’m also a manic depressive. The meds I am on have to be judged carefully. I don;t want to be in a state of mania or depression but if I take too much stabiliser my ability to be creative lessens noticeably. Catch 22 🙂
Am watching this discussion with interest, because it’s a question I’ve struggled with a great deal.My son has mild PDD, so, if such a magic cure were to come along, he would be able to make a choice as an adult. Moreover, even with no treatment at all, he would likely live an independent, reasonably “normal” life, albeit with a few struggles along the way.
My niece is severely autistic, and will always need 24/7, 1-to-1 care. She will probably never get to the place Kev describes where she could conceivably decide for herself. I’m quite sure her parents would jump at the chance of a real cure, even as they advocate for greater acceptance of, and services to help, people living with autism.
Have you ever seen Sound and Fury? It’s a documentary about the controversies surrounding cochlear implants in the deaf community. There are some interesting (if very limited) parallels to the debate over neurodiversity.
I’m also not sure my child will either. Her diagnosis is severe autism with learning difficulties (mental retardation in the US I think).
But….I have read the words of lots of autistic people – those considered severe and those considered high functioning and a lot say they don;t want to not be autistic anymore. By the same token, some do. If I consider myself an advocate, I have to respect both voices even if the idea is somewhat moot right now.
And we also have to remember we are still at the dawn of our understanding of what autism is (or even if there is one single ‘autism’) or how it manifests itself. The latest science posits a recovery rate of between 10 – 20% if certain conditions are apparent. And even then, for those considered low functioning we may have to think very carefully.
Truth is that there are no easy answers but I really do believe that the people who we, the non-autistic, should listen to most of all are the autistic themselves. All of them.
That was a wonderful link about Carly – I’d never heard of her before. She does seem to relate to her autism, however, as a handicap she is overcoming successfully because she was given an opportunity, rather than a state she would have chosen on her own…if I’m reading her correctly.
You’re right Kev, there are no easy answers here. And you’re absolutely right that some autistic people might consider their special abilities (e.g., enhanced memory if they have it) too valuable to be “cured” out of. Though if a treatment has to start very early in life to provide a cure, I don’t know how we’ll be able to determine this.
I agree with Kev. This would be the major message of neurodiversity to me, that we all have a right to be here and be human in our own way. That is not to take away from the very real challenges some individuals face.
Honestly, I think if you buy into the disease model of autism *exclusively* you’re missing something, and you’re missing out on something.
Sadly people do. This is, in essence the driving force of the extreme biomed movement. Cure *at all* costs.
Your second question is very difficult. Alleviating symptoms is one thing. Totally eradicating autism is something else. The power to alleviate some symptoms in some cases is already here (speech therapy for example). MY child has that therapy as and when we can afford it.
As for totally eradicating autism itself. I would rather advocate that I bring my child to a place where xe can decide for xyrself. Whatever that decision was I would support it and help xyr. However, that may never be possible and that is where my ideas run out 🙂
What I would sy though is that we don’t have this cure but we do have autism. We need to concentrate more (IMO) on finding things that will help. I really think a total 100% cure in the way you’re describing is a very very long way off indeed.
I did a Cochrane search on autism and there doesn’t seem to be much research support for any of the major interventions, including ABA. I think this is a big reason why parents are turning to alt medicine–they feel that mainstream medicine doesn’t have a lot to offer them.
Regarding a “cure” for autism, we don’t even understand exactly what autism is. A cure, if one is ever possible, is a long, long way off.
In any rights movement there is that point where the larger society backs down from labelling “the other” and “the other” begins to define himself or herself. That’s how you get an arch-conservative like Dennis Prager actually saying on CNN in 2009, “I have no doubt that two gay men can love each other deeply.” Just that simple sentence is proof of how attitudes can change when the people affected by the issues get to define them.
Who’s defining the issues? People with autism or parents. . .or should both?