Nov 23 2009
Some Good Autism Reporting
I and other science bloggers spend a lot of time and virtual ink doing damage control on bad science reporting in the media. It’s hard not to get a little jaded after wading through one terrible science article after another. I discuss this problem and one stunning example of promoting pseudoscience passing for journalism today on SkepticBlog.
But occasionally I do make a point of celebrating good science journalism when I see it – and not just a solid piece discussing a new science news item, but a reporter tackling a controversial topic and getting it right. Most of the time mainstream journalism of fake scientific controversies or fringe ideas falls for the “false balance” fallacy – presenting fake science and real science side by side, as if they were equivalent, or just a matter of opinion. Or, even worse, we get token skepticism, or no skepticism at all.
Last week the Chicago Tribune printed a long piece on biological treatments for autism by Trine Tsouderos and Patricia Callahan, and an excellent piece it was. They clearly understand what the real story is – a subculture of fringe doctors and others who are essentially doing unethical experiments and children with autism. They are exploiting desperate parents (who then sometimes contribute to the exploitation of the next desperate parents) who are seeking any possible help for their children.
Of course the desire of parents of autistic children to do everything they can to help them is perfectly understandable. But there is a quagmire out there – an insidious trap waiting to ensnare the vulnerable, in the guise of professionals offering help. So-called DAN (for Defeat Autism Now) doctors and others are offering a slew of experimental and often highly implausible treatments for autism.
These include chelation therapy, which is based upon the notion that autism is caused by heavy metal toxicity, including mercury. This idea has essentially been disproved, and there is no evidence to support the efficacy of chelation therapy – which is a risky treatment that can potentially be fatal. Tsouderos and Callahan point out that using an unproven therapy is akin to experimentation, but that these experiments on vulnerable children are not being conducted with proper protocols – so they are experiments that can never provide useful evidence. They will never prove that the treatments work or don’t work.
Further, parents are not being provided with the kind of informed consent that proper human research demands. These treatments are therefore unethical on multiple levels: the providers are not giving formal informed consent, they are not conducting proper trials that are gathering useful information, they are overselling their therapies, and they are charging for experimental treatments.
Further, they are wrapping their entire philosophy is a grand conspiracy theory – turning parents against the medical establishment, the government, regulatory agencies, and professional organizations. The result is a culture of hostility toward science and the institutions of science, while relying on fanciful and implausible experimental treatments.
They discuss the result of the Autism Omnibus hearing:
The scientists who testified sharply criticized the research behind alternative treatments, using words like “careless” and “misleading.”
“So much of what’s said doesn’t make scientific sense,” testified Dr. Robert Rust, a chaired professor of neurology at University of Virginia. “There is what I regard as cherry-picking, picking little pieces from the paper and ignoring the rest of it, and in some instances I think misrepresenting what the paper says.”
This hits upon the fact that alternative autism treatments are pseudoscience – they wrap themselves in the trappings of science, but this is simply a cover – they use evidence to support what they want to believe, not to discover where the truth lies. Then, of course, they turn around and accuse mainstream scientists of doing just that – a preemptive strike against their critics.
Another example of this pseudoscience is the use of provoked heavy metal urine testing. One test for heavy metal poisoning is to collect a 24 hour urine sample and see how much is being excreted in the urine. There are validated normal and abnormal levels, like all useful medical tests. But dubious testing companies, supporting the dubious treating doctors, perform a provoked urine test. They first give a drug that binds to heavy metals and excretes them in the urine. This dramatically increases, temporarily, the amount of heavy metals in the urine (we all have trace amounts of heavy metals in our system that we absorb from the environment). So of course these levels are much higher than the background level in the urine – but they use the normal values for unprovoked urine testing to claim that the high provoked levels means there is heavy metal toxicity. This is simply fraudulent behavior. It is malpractice.
This malpractice, however, exists in an “alternative” world, where practitioners have done everything they can to shield themselves from the mechanisms that enforce a standard of care.
It surprises me that more reporters have not caught onto the story behind this scandal. There is an obvious consumer-protection angle that usually works. But perhaps the tide is turning a bit – and thanks to Tsouderos and Callahan for a job well done.
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19 Responses to “Some Good Autism Reporting”
Both this post, the article and the one on sbm just made my week! I am so thrilled to see this………especially in Oprah’s hometown newspaper! Remember that one author she had on, the one who falsified his book, and how she lectured him and belittled him, told him he should admit he’s wrong?
She should do the same. Before she leaves her network gig, if she was as great a person as she (and much of the world) thinks she is, she should make a public apology and admit she promoted false treatments.
My heart and shoulders just feel lighter after reading this…….I hope the tide is turning. I plan on posting it on fb and on the parents’ group board for my son’s condition.
Thank you!
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I don’t smell a grand conspiracy, just a very dangerous snowball of misinformation and confusion. The only way you can defeat that is by better education and clarity in these matters. That’s difficult when pro-vaxxers try and swing the pendulum the other (equally wrong) way.
For example, on the dangers of mercury, they’re well known, and you seemed to suggest that mercury is in fact safe, which we both know is untrue, it’s highly neurotoxic.
The theory behind the mercury-vaccine-autism link is that some small and unfortunate minority are sensitive to well below toxic levels and can react to the tiny levels of the substance in vaccines. Testing for toxicity is therefore pointless in this context, shame that the practitioners in question don’t even realize this.
All we need to do is collect enough data on the use of mercury containing vaccines (such as H1N1) vs those that don’t and look for geographic/temporal correlation with autism cases, or lack thereof.
Show people a good scary looking graph enough times and they’ll believe anything, that’s how the whole vaccine/autism affair started in the first place.
johnc – I never said or implied that mercury is not a toxin. It is (as I have stated on this blog an elsewhere numerous times), but toxicity is always about dose. We have mercury in our systems from the air we breath and the food we eat. A recent study showed that mercury level correlate with fish intake, but not with vaccine history.
It is simply true that the amount of mercury in vaccines (especially now) is too tiny to matter – much smaller than what we are getting from the environment.
And the epidemiological studies have been done – there is no correlation between mercury in vaccines and autism or any other neurological disorder (http://sciencebasedmedicine.org/reference/vaccines-and-autism/)
The subset of susceptible kids theory is not based upon anything but special pleading. First the anti-vax movement claimed that mercury was a major cause of autism – the explanation for the alleged “epidemic”. Only after that speculation was shot down by evidence did they form the notion that maybe there is a subset of children hiding in the data. And still they have not data to back that up – it is just special pleading.
You can make that claim about any negative correlation – maybe the dose was too low, maybe there is a susceptible sub-population – I hear that about every negative study.
There is no data to backup up the susceptible sub-population idea with mercury in vaccines.
Whenever I start hearing protests about mercury, I always direct parents to this article from kellymom (which is a pretty “crunchy” parenting site).
Children receive more mercury from breastfeeding than they do from vaccines–yet you don’t hear any calls for boycotting breastfeeding.
http://www.kellymom.com/health/chemical/mercury.html
Dr. N, I have seen ant i vax advocates say that you need to do the challenege test for mercury because autistic children sequester more mercury in tissues than other children. Is this even plausible? Regardless, I can’t think of how you could test for this in an ethical way.
Steven,
Fine, but put that into language the emotional masses will understand.
I don’t think this is ever going to go away until we find out what causes autism and related spectrum disorders, and precisely why they appear to be rising.
My money (if I had to bet) would be on hormonal pollutants like oestrogen in drinking water, levels of which are thought to have been steadily rising since the pill was invented.
I’m more of a gambler than a scientist though….
“”I don’t think this is ever going to go away until we find out what causes autism and related spectrum disorders, and precisely why they appear to be rising.”"
We do know why they are rising–increased awareness, better screening, and some parents (imo) seeking diagnoses for kids who are even just a little bit quirky, just so that they can qualify for services.
It’s a shame, because those parents are wasting time and energy on futility. And I think it’s difficult to move forward if you don’t reach a level of acceptance with your child. I don’t focus on curing my child with some snake oil and wasting my family’s money. This stuff bankrupts families, I’ve seen it happen.
I accept that the therapies we have are all that’s available to him right now, and am able to just focus on helping him be the best he can be.
I don’t see (Dr. N can tell us if I’m wrong) any of the parents of kids with juvenile diabetes diverting attention away from the cause. Why autism?
The notion that autistic children sequester more mercury is just made up – it’s nothing but speculation invented to dismiss the negative evidence.
If we take it seriously as a hypothesis, then it needs to be tests, and so far what testing there is does not support it.
Further – if you want to develop a provoked urine heavy metal screen then you have to go through the standard process (we have been doing this for a while) of developing normal levels. Until you know what is normal, the test is useless.
Test a thousand “typical” children and see what the range is.
But worse than having no normal range is using the wrong normal range – using an unprovoked baseline to compare a provoked urine test. That is fraud.
“We do know why they are rising–increased awareness, better screening, and some parents (imo) seeking diagnoses for kids who are even just a little bit quirky, just so that they can qualify for services.”
That’s still only a theory, and it’s a phenomena not completely consistent with other disorders, so it’s still a questionable one.
That said, I do believe disorders on the milder end of the spectrum are way over-diagnosed.
JohnC —
Have any evidence for your belief that “disorders on the milder end of the spectrum are way over-diagnosed.”?
The second installment of the series is up
Autism treatment: Science hijacked to support alternative therapies, Researchers’ fears about misuse of their work come true
http://www.chicagotribune.com/health/chi-autism-science-nov23,0,6519404,full.story
clip
As I often do for stories of this type, I’m keeping a running list or index of pro- and con- blog posts. This one’s on the list.
The list is here
http://lizditz.typepad.com/i_speak_of_dreams/2009/11/the-unethical-treatments-that-autism-is-vaccine-injury-and-other-false-premises-gives-rise-to.html
@Johnc
“That’s still only a theory, and it’s a phenomena not completely consistent with other disorders, so it’s still a questionable one.”
Actually, it’s a fairly well supported theory, and that is an actual theory as opposed to conjecture or speculation which is what the special pleading of mercury sensitivity or hormonal pollutants is.
I’m not sure what you mean that it’s not completely consistent with other disorders. There is a decrease in the rates of mental retardation diagnoses that correspond very closely to the increase of ASD diagnoses.
http://photoninthedarkness.com/?p=158
http://www.sciencebasedmedicine.org/?p=340
et al
Too bad the filter can’t recognize links to SBM as OK to not hold for review. Eventually my reply to JohnC will show up.
@lizditz
Nope, just personal opinion and personal experience to guide me on that one.
My point was that over-diagnosis and increasing frequency are hard to distill from each other, and there’s no reason why there can’t be an element of both at play.
ppl keep forgetting the difference between methylmercury and ethylmercury.
The reporting about the amount is also heavily skewed because ppl confuse weight and volume – with mercury being so heavy, things get blown out of proportion quickly.
All the demonstrably falsehoods and logical fallacies presented in the autism causes and cures reporting is so incredibly frustrating…
I found the Tribune article interesting and informative. Reads easier on the web than in the inked paper addition. I believe that the issue surrounding alternative treatments is that there is faith in the belief that you can change a “defective/damaged” human being with tickering to become a robotic “normal” or even a super kid. This can’t be done because kids aren’t family property, like the family car, and they certainly can’t be repaired by an alchemist or a professed mechanic.
In the battle of the hearts and minds of those who get their information on vaccinations from the internet, it is really is great that more information from other sources are out there. And JohnC, not all H1N1 vaccines contain thimerosal, just multi-use vials. And as everyone else has said, it’s still safe, much safer than if the vial got contaminated with bacteria.
Does anyone know, as part of the 5-part series, are they going to feature the anti-vax movement? I poked around on the Tribune site and can’t find anything.
“We do know why they are rising–increased awareness, better screening, and some parents (imo) seeking diagnoses for kids who are even just a little bit quirky, just so that they can qualify for services.”
There’s quite a good example of this in the autobiography of Chris Donald, founder of the UK’s ‘Viz’ magazine. Chris had an older brother who had always been considered something of an oddball. One day Chris was watching a documentary about Asperger’s syndrome when he realised that the description fitted his brother perfectly. He reached over to pick up the phone and call his brother, when it rang – it was his brother telling him that about a TV documentary that was describing someone just like him! After seeing a doctor the brother was subsequently diagnosed as having Asperger’s syndrome.
Final score: Oddballs -1; Asperger’s +1.