Where’s the Harm…

daily dose

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When a child suffers, and science can’t provide definitive answers and solutions to stop the suffering, parents turn to whatever is left, no matter how unproven. No matter how expensive. No matter how demeaning, or dangerous..?

In the world of autism, there are far more unproven treatments than proven ones. A recent study found only five or six out of a hundred treatments used by parents, were proven. I can understand the desperation these parents feel, to try anything and everything. But I do not condone them acting on that desperation, and I do not think that it is harmless.

At one end of the slippery slope of unproven autism interventions, you have things like vitamin supplements (such as Omega 3), and gluten-free casein-free diets. (There are good reasons you might want your children to take these supplements and follow this diet; it’s doing it to improve autism which is unproven). As you slip further down the slope you’ll come to the demeaning practice of packing. Towards the dangerous end you’ll even find people subjecting their children to chelation.

There is harm in even the gentlest forms of unproven therapy, for many reasons: There is the money spent on “experts” and the books, products and services they peddle. The time spent as a family taking part in the therapies (which can be many hours daily). That time and money that could have otherwise been spent on therapies that do actually work. There is too, the false hope. It’s easier to see the damage at the extreme end of unproven therapies and cures; psychological damage, and even death.

As a mother of any child you come up against suggestions for unproven therapies; teething is an easy and common example of such a situation. I’ve been told to try amber necklaces more than once, even though the only backing for their use is inconsistent anecdotal evidence, and even though science strongly suggests they cannot work as claimed. My local pharmacy suggested we buy a homeopathic remedy for teething, again, despite openly admitting to me that there was no scientific basis for it working (as indeed, for any homeopathy ever working).

These might then seem like harmless suggestions, but they suffer from the same critiques as the unproven autism cures (wasted money, wasted time, being the least of these). I know some other mothers think I should take the attitude that if it helps them feel better in the face of their desperation about “doing something, anything” to assist teething pain, then why say anything negative about it..?

If we spoke out more about the “less harmful” lies, maybe we’ll make in-roads to stopping the more extensive harms. If we stop throwing good money at such therapies, there would be more spent on improving current working therapies, or finding proven alternatives: I don’t think we have all the answers yet, and I know current proven therapies can only do so much, but it is because of those missing answers and needed treatments that we should insist on evidence and proven results, and not let our blind desperation lead the way.

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21 Responses to Where’s the Harm…

  1. Stef says:

    First do no harm.

  2. shazza says:

    Great post. I cant believe what some ASD children are being subjected to. The most recent alternative treatment I came acoss was Fecal Transplants. There is no end to the madness.

  3. MJ says:

    There is a flip side to this argument and it is the danger of assuming that just because a treatment hasn’t become common, sounds absurd, or hasn’t been “proven” using wide scale tests that it must be wrong. This is the major failing of the skeptic movement and I don’t think that “evidence” has much to do with it.

    Take for example the disgusting practice of fecal transplant. When I first read about it I thought it was absurd but I kept an open mind. So as a result, when I ran across articles like this –

    http://www.slate.com/id/2282768/
    http://www.newscientist.com/article/mg20827911.100-taboo-transplant-how-new-poo-defeats-superbugs.html
    http://www.the-scientist.com/news/display/57795/

    I was willing to accept the fact that I might be wrong. If you notice in the last one it refers to a clinic trial of the technique –

    http://www.medpagetoday.com/MeetingCoverage/EASD/22352

    There is also this published research from 2004 that talks about this technique –

    http://journals.lww.com/jcge/Abstract/2004/07000/Bacteriotherapy_Using_Fecal_Flora__Toying_With.3.aspx

    This article predates the Science Based Medicine article by 4 years and if you notice the conclusion –

    “Published reports on fecal bacteriotherapy are few in number, and detail the results of small uncontrolled open studies and case reports. Nevertheless, given the promising clinical responses, formal research into fecal bacteriotherapy is now warranted.”

    is at odds with what the SBM article said four years later. So then it comes down to a matter of trust, who do you believe more, the Journal of Clinical Gastroenterology or SBM?

    Now, I just skimmed the available evidence quickly and I am sure I missed a lot. I would not be willing to try this with my children as I think there are safer, more established ways of helping rebuild gut flora if that becomes a problem. But I am not going to sit around and mock people who do try it. Even a quick look at the subject shows that there is some evidence that this is a possibly valid, if disgusting, technique.

    So in general, I find that an open mind for these sorts of things are the best. There are so many different parts of the body that seem to be impacted in children with autism that it is very easy to see that one person’s quackery can be another persons effective treatment.

    • You appear to have overlooked one of the core points of my post, and the specific claim about fecal transplants: There is no reason to think that fecal transplants can help autism. Not one of your links says otherwise, they don’t address autism at all (that I could see). It’s the same error many people make when they talk about gluten-free diets helping autism: There is no evidence that diet change actually makes autism better. In fact there have been studies done trying to find such evidence and none was found (I linked to such in my post). But if a child has allergies – regardless of their autism – then of course a change of diet will help them. Again, the error is taking other problems (such as allergies) and claiming autism is one-in-the-same with that other issue, when there is no evidence to make that link.

      As to your first point: “There is a flip side to this argument and it is the danger of assuming that just because a treatment hasn’t become common, sounds absurd, or hasn’t been “proven” using wide scale tests that it must be wrong. This is the major failing of the skeptic movement and I don’t think that “evidence” has much to do with it.” I have to strongly disagree with the claim that this is the core or even the trend of the skeptic movement. In my readings and experience with the skeptic movement, the approach is to question and investigate to discover whether a claim is truthful or not, not to simply deny it is truthful on the basis of its popularity or unpopularity. In fact, skepticism will readily investigate extremely popular activities too – like bottled water claims, religion and amber necklaces – so the idea that they attack treatments that aren’t common doesn’t quite sit with the actuality of the movement.

      I do appreciate your comment, it’s nice to engage in some important debate. Thank you 🙂

      • MJ says:

        “There is no reason to think that fecal transplants can help autism. Not one of your links says otherwise, they don’t address autism at all ”

        You are absolutely right, autism was not addressed by the links that I included. However, that wasn’t really the point I was going for.

        I was trying to point out that the SBM article about fecal transplantation in general wasn’t necessarily accurate. It said that “fecal transplantation is based on a drop of truth and a gallon of pseudoscience”. I don’t think that is a fair statement, and I believe that just the few links that I provided would also dispute that notion.

        In general, I find it is bet to divide questions about treatments into two parts. The first part is whether the treatment can actually do what it says it can do while the second is whether that claim is important to a particular child with autism.

        I think it is important to look at the individual child and not try to make generalisations about all children with autism because of the huge scope of what autism encompasses.

        Your child may not have GI issues along side of their autism but two of mine do. And, as I wrote about a while back, those issues likely made the symptoms (or behaviors) of their autism worse than they would have been otherwise.

        Remember, the word “autism” only refers to the presence or absence of certain behaviors. If you have enough of these and they impair your ability to function then you have the disorder. The definition doesn’t really say anything about the cause or physical mechanism that causes the behaviors.

        So if the GI issues make the behaviors worse then is it a co-morbid food allergy or a small part of the whole set of physical pathways that are disrupted that lead to the behaviors we describe as autism?

  4. I agree with just about everything you’ve said there MJ, we’re not fundamentally in disagreement. I take issue with the people who say “this diet improved my child’s autism, therefore all children with autism will benefit from this diet”. If symptoms of autism improve because of removal from the diet of an allergen, then it would be more precise to say “the behaviours caused by my child’s food allergies have gone since I changed their diet”, in the same way that the behaviours of a child without autism would have improvements with behaviour if they had their diet fixed to respond to gut issues. Similarly, if someone’s parenting improved and you saw an improvement in some aspects of their autism which had been made worse by bad parenting, you wouldn’t venture to say “autism is caused by bad parenting because it is made better by good parenting”. I think we are in agreement about all this, it’s just a matter of being precise, and not making dangerous and misleading generalisations that encourage parents to think some treatments are “cures for autism”.

  5. Helen Love says:

    I agree with MJ that there is a lot of science to support fecal transplant for c. diff and other published reports of benefit in ulcerative colitis and IBS. Many children with autism have IBS symptoms. Most of your immune system education is in your GI tract, that’s why it could help for autism. What we really need is more research. We need to find out what is normal. There are no valid lab tests for gut flora, only the fringe labs perform these tests. I asked my son’s doctors, who performed a fecal transplant for c. diff, if they would preform a transplant for my child with an immune GI disease. They said they could only do it for c. diff infections. I really don’t think fecal transplants would be harmful if the donors were tested for pathogens as described in the articles on fecal transplant. The science based medicine article overstates the risks. Almost no one in the US or developed countries has any worms, because we use toilets. We have eliminated most of our pathogens and others like the bad e. coli strains would cause symptoms and be able to be tested for in the laboratory. Also, probiotics do no permanently change the gut flora, whereas fecal transplant does. If I was guaranteed fecal transplant was safe, I would take that over a daily administration of probiotic supplements.

    Also many studies have shown omega 3’s are effective in reducing inflammation and help raise IQ. No harm in taking them, especially since they are missing in the western diet.

    The trouble is a lack of research in autism. If I was a DAN, I would never recommend an expensive treatment like HBOT unless I had plenty of evidence it worked. If I didn’t have the evidence, I would do a study and not charge the families. To me, charging for unproven treatment is extremely immoral.

    I like that you are covering this topic, and look forward to reading more of your blog.

    • Hi Helen.

      There isn’t a link between autism and immune system problems (which is not the same as saying that some autistic people don’t have immune system problems). The idea that the immune system is related to autism, came from the anti-vaccine movement, and got a life of its own. It’s not grounded in good theory nor good evidence.

      If there are no valid tests for gut flora, then the effects of treatments can still be analysed by running placebo controlled studies of their benefits. Those studies have shown that diets and dietary supplements that are meant to improve the behaviour in autistic children, are either at the same level as placebo effect, or not statistically significant. That’s true of Omega 3, which has not been shown to improve IQ ( http://www.badscience.net/2010/06/the-return-of-a-2bn-fishy-friend/%5D ). Again, inflammation and the idea that probiotics are needed feed from the idea that autism is some sort of immune system problem or gut problem – which isn’t correct. An excellent book that explains where those theories came from, is “Autism’s False Prophets” by Paul Offit.

      There isn’t actually a lack of research for autism at all – there are copious numbers of studies performed, some of them of enormous populations, and some are particularly robust.

      I enjoyed the chance to respond to those issues, and I really appreciate your comment.

      • MJ says:

        “There isn’t a link between autism and immune system problems (which is not the same as saying that some autistic people don’t have immune system problems).”

        I really hate to say it (and I am not trying to be rude), but you are very badly mistaken on that point. There are many studies that show a relationship between autism and abnormalities in the immune system and these findings don’t really have anything to do with the vaccine-autism hypothesis.

        Here is an excerpt that I could find quickly –

        Volk, Heather E, Irva Hertz-Picciotto, Lora Delwiche, Fred Lurmann, and Rob McConnell. 2010. “Residential Proximity to Freeways and Autism in the CHARGE study.” Environmental health perspectives 1002835. http://www.ncbi.nlm.nih.gov/pubmed/21156395 (Accessed December 18, 2010).

        “In particular, research examining serum biomarkers report increased levels of the pro-inflammatory cytokines tumor necrosis factor (TNF)-a, interleukin (IL)-6, IL-8, and colony stimulating factor II (GM-CSF), as well as two markers of TH-1 immune response (interferon-? (IFN-?) and IL-8) in postmortem brain tissue of autism cases compared to controls (Li et al. 2009). Additional research from the CHARGE Study has shown increased plasma levels of immunoglobulin (Ig)G-4 and reduced concentrations of TGF-ß, related to immune response and inflammatory processes, in plasma of children with autism compared to typically developing controls and children with developmental delay (Ashwood et al. 2008; Enstrom et al. 2009).”

        If you fully understand that you have a much better grasp on the immune system than I do. I am not really the person to address the details of the issues. I know that they exist and I know that they can cause problems. But beyond that my knowledge is lacking.

        If you are interested in the subject, I suggest you take a look at the blog that passionless drone runs. He has a much better grasp on these issues than I do.

        http://passionlessdrone.wordpress.com/

      • MJ says:

        Sorry for the double comment, but this study might be a better place to start (and best of all, the text is free on pubmed) –

        http://www.ncbi.nlm.nih.gov/pubmed/20160651

        The immune system’s role in the biology of autism.
        Goines P, Van de Water J.

        Source
        Division of Rheumatology, Allergy and Clinical Immunology, University of California at Davis, California, USA.

        Abstract
        PURPOSE OF REVIEW:
        The following is a review of the most recent research concerning the potential role of immune system dysfunction in autism. This body of literature has expanded dramatically over the past few years as researchers continue to identify immune anomalies in individuals with autism.

        RECENT FINDINGS:
        The most exciting of these recent findings is the discovery of autoantibodies targeting brain proteins in both children with autism and their mothers. In particular, circulating maternal autoantibodies directed toward fetal brain proteins are highly specific for autism. This finding has great potential as a biomarker for disease risk and may provide an avenue for future therapeutics and prevention. Additionally, data concerning the cellular immune system in children with autism suggest there may be a defect in signaling pathways that are shared by the immune and central nervous systems. Although studies to explore this hypothesis are ongoing, there is great interest in the commonalities between the neural and immune systems and their extensive interactions.

        SUMMARY:
        In summary, the exciting research regarding the role of the immune system in autism spectrum disorders may have profound implications for diagnosis and treatment of this devastating disease.

      • Hi MJ.

        No need to apologise, I sincerely do not mind being wrong, if indeed I am wrong. I am not wedded to any one idea about what causes or improves autism, rather, I follow the science. Then there is “good” science and “bad” science – not all studies are created equal (literally). There is sample size, statistical significance of findings, whether stated conclusions actually follow from data, etc. I know my own limitations in understanding these studies, so I rely on scientists who work in these fields to explain to me the force of the studies and where they fit within the known literature on the subject. Where the experts disagree, I look at their disagreements and the bases for those disagreements, and particularly take note of meta-analyses.

        My own conclusions are drawn from those sources, rather than discrete studies that I am personally not trained to evaluate. So yes, I’ll keep an eye on the changing literature, and always be open minded to being “wrong” (in as far as “wrong” means further studies and meta analyses show otherwise), but I am wary on changing my understanding based on opinions of others who are also not trained in the field, and perhaps have been mislead by researchers with particularly suspect motives.

        For what it’s worth, the two books which have most influenced my views about dealing with scientific debates, are “Bad Science” by Ben Goldacre, and “Autism’s False Prophets” By Paul Offit. I would genuinely be interested to hear whether you’ve read their books, and what you thought of what you read.

        Thanks as always for your comments.

  6. MJ says:

    You are right, all of the things that you have mentioned about studies do matter very much. But there is a fine line between legitimate problems and someone nitpicking a study to death because they don’t like what it says.

    I haven’t read either book, but I do follow Ben Goldacre’s blog and find him to be worthwhile.

    In my experience, Offit is not a good source. He may be an expert in some fields but autism is not one of them. As far as I know, he does not actively participate in autism research, he does not see children with autism, nor does he seem to keep up with the latest research in the field. But he still talks as if he is an expert in the subject. Although for that matter, he does that for other fields as well, such as toxicology

    I think I should mention that when I first starting learning about autism, I did trust what Offit said. Although part of that was because of the people that I ran into online and what they wrote on their blogs. But after I started trying to verify what Offit was saying on my own (always a good practice), I ran into case after case where what he said wasn’t quite right.

    So I started trusting him less and less until I got to the point where I am now where I basically ignore what he has to say. He may be right in some areas but I am not going to put much stock in an expert when I can’t be quite sure when he is speaking as an expert or when he is just playing one.

    But please don’t take my word for it. Take a few of the claims from Offits book and see how well they stack up to what other sources say. Or look at the articles that he has published or at opinion pieces he has written for major newspapers. Start verifying what he has said and see if you get to the same place. Who knows, I could easily be completely wrong about the guy.

    I put much more faith in researchers who actually work in the autism field and are conducting research themselves, such as Hertz-Picciotto. But not many of them publish books.

    • I’ve done my research into Offit, and he never claims to be something he’s not, nor speaks as if he’s an expert in a area where he is not. The only people who claim otherwise are those who are passionately anti-vaccine because they are trying to discredit him across the board. His focus is on vaccines, which is his area of significant expertise. In his book he references studies and counter-studies like any good scientist would. He is open about opposing opinions and studies, and neither nit-picks or beefs up to suit an agenda. He refers to other experts on autism and causes of autism – on all sides of the debate. I know you’re not a “fan” of his, but if you can get your hands on the book, I really do think you’d find it particularly enlightening. At the least it would better equip you to counter what he claims and understand why he’s held in such high regard, and so feared and hated by those with a barrow to push (usually a money-making barrow).

      • MJ says:

        When in comes to Offit, we will have to agree to disagree. I may read his book someday but I have a large stack of research papers that I want to get to first.

        But I still suggest that you look into the connection between immune problems and autism, regardless of what Offit had to say on the subject. At the very least, there has been a lot of research published on the subject since his book was written.

      • Fair enough MJ, I shall.

      • OK, this is the summary of my research: Some studies have suggested a positive relationship between autoimmune diseases and autism, but they have not found evidence to suggest a relationship between all autism and autoimmune problems. It’s of the same category that some autism is caused by Fragile X Syndrome, some is caused by rubella infections during pregnancy, some caused by taking thalidomide during pregnancy, etc. Ie, there are multiple causes of autism, and autoimmune is a potential – apparently not proven – one (unlike the ones I listed above). There is good reason to suspect the autoimmune hypothesis is incorrect, based on current knowledge of how autism affects (and doesn’t affect) the brain. Definitely not enough evidence exists to use therapies based on the autoimmune theory, particularly when such suggested therapies already have a history of negative or placebo-level results. I’ll keep an eye out for future information on the topic too.

  7. MJ says:

    Just a few (semi) random notes –

    1. Auto-immunity is only a small part of the picture of what is going on in the immune system in autism. There are many other parts of the immune system that can be disrupted in children with autism. If all you found is auto-immunity you might want to keep looking.

    2. Autism is all about subgroups. I don’t think that I have ever run across a single specific trait/feature that is common to all people with autism. There are general themes that are pretty common but I don’t think I have ever seen a single trait that appears in even a simple majority of autism – even when you are talking about the core symptoms of autism. So even if the immune disruption is only found in a minority of children, it might be important.

    3. Not everything is about “causes” of autism. Sometimes it is about figuring out what is disrupted – even if it is a secondary effect – and trying to correct it or trace it back to the source.

    4. I don’t think that we know anywhere near enough about what the immune problems might be to even attempt trying specific therapies to address the problems. I certainly wouldn’t try anything on my children without a medical doctor suggesting it and them having a very (very) good reason for trying it.

    Just as a point of reference, all three of my children have documented problems with their immune systems outside of auto-immunity (only the twins have problems that might be auto-immunity). For example, all three children have shown extremely high levels of total NK cells – almost twice the reference range for children their age (or how old they were at the time of their tests) over a wide range of time. And these aren’t strange tests done by some fly-by-night organization either, these are standard tests performed at a world-renown children’s hospital.

    That isn’t the only problem they have either, they have out of range values in the levels and/or ratios of CD3, CD8, CD4, CD19, as well as others. Now, I have no idea if this is “causing” their autism or is being “caused” by whatever biological problem did cause their autism, but it certainly isn’t a healthy state of affairs.

    The question for me is what effects (if any) these disruptions have on their everyday lives and (maybe more importantly) what causes them.

    The funny thing about autism is how easy it is to dismiss something as irrelevant until it shows up in your own children. But unless you go looking for these things specifically (or have a doctor who does so), you aren’t going to even know if it is (or isn’t) there.

    For example, consider cholesterol. I have no idea that my children had problems with extremely low cholesterol until their doctor (who follows the latest autism research) decided to test it. Lo and behold, their cholesterol was way too low (lower than 95% of all children their age). That may seem like a small thing, but having enough cholesterol is actually very important. It is used to help produce vitamin D, protect neurons from damage, as well as many other functions.

    Now tie that back into the possible auto-immunity sometimes seen in autism and you have a (possible) plausible mechanism. What happens to children who have issues with low cholesterol AND and autoimmune problem where there are auto-antibodies that target cells whose protection is weakened by a lack of cholesterol?

    No study that I am aware of has looked at that specific subgroup to see if this is a problem. Two of my children would fit into this subgroup while the third would not. What does it say when you don’t even have the same biological profile in the same family?

    All of this is to say that keeping an open mind to the possibilities and not getting locked into the mindset of someone like Offit is a good thing. He is quick to tell you what he thinks autism isn’t but isn’t helpful at all in figuring out what it is.

    Autism research is still in its infancy and if there are really many different subtypes of autism with their own distinct profile, then almost all of the research to date would need to be thrown out and redone with the subgroups in mind.

    • I found your comment quite interesting. I will always have an “open mind” to the variations in autism, and the causes and treatments of autism, unless there is solid scientific evidence and reasons to think otherwise (there is a difference between having an open mind, and being a fool for anything anyone says without good reason to believe it). Tis afterall the nature of science that it is a constant search for the best hypothesis, always refining and investigating to explain discrepencies and make sense of the data. However I am yet again left with the impression that you haven’t read Offit. He is not quick to simply tell people what autism “isn’t” – he instead explains and presents the studies and science from both sides, and does an impressive job of it. Furthermore, it is not his specialty to figure out what autism is – his area of interest is specifically vaccines, and he has a superb and broad understanding of that area; he never claims to be an expert in autism. Where the claims about autism intersect with verifiably false claims about vaccines, then yes he has something worth saying and listening to.

      (By the way, I’ve tried to comment on a few of your posts over the last month or so and your blog won’t let me – even though it used to. I don’t know what’s causing the problem, and I rather doubt you can fix it, but I thought I should let you know anyway.)

      • MJ says:

        As I said earlier, I haven’t read Offit’s books. But I have read many of the papers he has had published that intersect with autism, articles/videos where he is quoted in the media, and op-eds in newspapers that he has written.

        For a good example of my problem with Offit, look at what he wrote in response to the Polling case in newspaper op-eds. He presumes what is going on with the child only based on what he knows of “science” and tells her father that he is wrong – even though he never treated this specific child or examined her records.

        But Offit isn’t really relevant to immune disruption in autism as that is not his specialty (or even his area of study). Unless of course we are talking solely about vaccines causing some sort of disruption, which wasn’t my intent.

        WRT to my blog, thanks for letting me know – I didn’t know that blogger was doing that. I would guess the problem is with logging in before leaving a comment so I changed a setting that should allow you to leave comments without first supplying credentials. If you still have problems in the future, please let me know.

  8. MJ says:

    One last comment on the role of the immune system in autism, and then I will stop blathering about it. You may want to read this recent blog entry from pD, he goes into much more detail than I ever possibly could about the possible connection between the immune system and autism.

    http://passionlessdrone.wordpress.com/2011/05/12/the-interconnectedness-of-the-brain-behavior-and-immunology-and-the-difficult-to-overstate-flaccidity-of-the-correlation-is-not-causation-argument/

    While many of the technical details are far over my head, I think he makes a good case.

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