How Anti-Vaccine ‘Science’ Holds Back Credible Research

4 Jan

An expert panel says there’s no rigorous evidence that digestive problems are more common in children with autism compared to other children, or that special diets work, contrary to claims by celebrities and vaccine naysayers.

This is a totally non contentious piece of work. The panel examined all _credible_ research into the subject and decided there simply wasn’t anything available to support the idea of a things such as autistic entercolitis – a faux syndrome pushed by the section of autism anti vaxxers who believe Andrew Wakefields fake science.

Take careful note though of what they are saying:

1) That there’s no credible evidence. Parental anecdote is not credible evidence.
2) Thats autistic children may well have gut issues and that if they do they should be treated medically.
3) That special diets show no eficacy in _treating autism_ .

The issue for me therefore is that when autistic kids have gut issues they need to be treated properly by medical staff. This means making appointments that allow for the special needs of autistic people (either first in the day or last in the day to avoid waits, quiet waiting rooms with appropriate distractions and most of all well trained staff who won’t say caustic things to parents).

A TACA representative is quoted as saying:

“I’m filled with hope after reading this report,” said Estepp of the support group Talk About Curing Autism. “I wish this report would have come out 10 years ago when my son was diagnosed.”

Ironically, TACA who support the work of Andrew Wakefield probably _could_ have had a report like this ten years ago if the work of Andrew Wakeild hadn’t been so heavily promoted by groups like TACA.

The new report says the existence of autistic enterocolitis “has not been established.” Buie said researchers and doctors have avoided digestive issues in autism because of their connection with Wakefield’s disputed research, which set off a backlash against vaccines that continues to this day.

Quite understandably, researchers didn’t want to get involved in a field tainted by a person like Wakefield and his demonstrably false and disproven idea that MMR causes or contributes to autism. If they did, when they came out with science that contradicted Wakefield they would be subject to the same sort of hate crimes currently perpetrated against numerous other scientists such as Paul Offit who has recieved death threats. Who would want that?

Quite simply – if people like Wakefield admit their error and then shut up, more science will be done that will reveal more results groups like TACA may well support.

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24 Responses to “How Anti-Vaccine ‘Science’ Holds Back Credible Research”

  1. farmwifetwo January 4, 2010 at 14:54 #

    And…..

    If parental anecdotes aren’t valid… then the diagnosis of autism isn’t valid since it’s a 2hr appt of parental anecdotes.

    Why the hate for those that get better when gut issues are treated?? Is it envy or just something to bash at b/c those “camps” you dislike so much. For those of us who have children with nightly nightmares/terrors and diahhrea that left bleeding backsides to say “well it’s just teething”, “some children with autism are like that” from those very same professionals… YET, had there not been “autism” signs it would have been treated… what do you expect parents to do. They do the same as those NT parents… remove foods.

    As one with anecdotes for the elder child… Those gut issues are more than real and very debilitating. To claim they aren’t part of some children’s dx of autism is like saying that the fear of going outside, the fear of white noise, the fear of crowds, and any other outside influence on a person’s “autism” isn’t valid.

    Can’t have it both ways.

  2. farmwifetwo January 4, 2010 at 21:00 #

    http://www.cbc.ca/health/story/2010/01/04/autism-diet-digestion.html

    Lovely cut and paste job.

    Maybe you’d like to actually post the article CORRECTLY.

  3. Visitor January 4, 2010 at 21:29 #

    Well, it will be interesting to see how Age of Autism et al attempt to spin this. An utter rejection of Wakefield and everything he stands for. The longer paper of the two will doubtless be cited by attorneys, when Thoughtful House is sued back to the scrap value of Dr Wakefield’s favorite chair:

    http://pediatrics.aappublications.org/cgi/content/full/125/Supplement_1/S1

    Naturally, Drs Wakefield, Krigsman, Jepson and Crooke, were not invited to participate.

  4. Kev January 4, 2010 at 21:56 #

    fw2, maybe next time you’d like to follow the link I posted then you could read the piece CORRECTLY.

    And…I don’t know how your kids diagnosis was reached but mine was reached after a fortnights observation with at least four professionals involved.

    And hate? Where’s that? I expect any child with gut issues to be medically treated – as I said. Just don’t confuse gut issues with autism. The two ain’t the same.

  5. Clay January 5, 2010 at 00:09 #

    fuckwit2 said:
    “If parental anecdotes aren’t valid… then the diagnosis of autism isn’t valid since it’s a 2hr appt of parental anecdotes.”

    That’s just false. No matter what a parent said, a Dx of autism wouldn’t be given unless supported by testing and/or direct observation. I’ll bet that sounded to you like a good point to make, but like most of your rantings, it’s as hollow as a drum. Same old beat, too.

  6. Billy January 5, 2010 at 01:04 #

    “Buie said researchers and doctors have avoided digestive issues in autism because of their connection with Wakefield’s disputed research” That’s no excuse or valid reason. The need to research and consider such issues, and the scientific merit of research into it has nothing to do with what Wakefield did. They shouldn’t be choosing what to focus on based on what is popular within the scientific community. That doesn’t make their integrity any better than Wakefield’s.

    • Kev January 5, 2010 at 09:37 #

      As I said Billy, they were probably worried about being castigated to the point of having death threats made about them as some many other autism researchers have been in the last ten years. Anti-vaccine autism idiots need to step up and take responsibility for their actions, which have led us to this point.

  7. Dedj January 5, 2010 at 05:04 #

    It’s important at this point to remember that parental anecdote is valid – as parental anecdote only.

    It certainly isn’t better than solid, methodical examination by a trained observer. It can inform research for sure, but not supplant it.

    As some people clearly don’t understand that this is the distinction being made when people call it ‘not credible evidence’, we will always have people who are a bit off in thier thinking.

  8. Dedj January 5, 2010 at 10:55 #

    Unfortunetly, we only have limited abilities to research things.

    As such, we have to channel our resources into researching promising avenues, and , like it or not, any avenue that has been made to look suspect won’t look like a legitimate endevour.

    Scientifically, shared aetiology autism/GI or GI causes autism research is not very well supported, if supported at all.

    Morally, it’s difficult to support following in what is an alledgedly ethically bankrupt and financially invested researchers footsteps.

    Career wise, it’s difficult to justify when you can be researching avenues (like sensory issues) that are much better indicated.

    Safety wise, well, Kev covered that.

  9. Jen January 5, 2010 at 12:08 #

    Where do kids get diagnosed solely on parental anecdote? My kids were diagnosed in Ontario, and we had a team observing them at various times for almost 2 years before they got their official diagnosis (at that point they didn’t like to diagnose kids before age 4). They certainly listened to our stories, but most of the time was spent in direct testing and observation, both at the specialists’ offices and at the day care as well as in their therapy sessions.

  10. NightStorm January 5, 2010 at 16:02 #

    Anti-vaccine autism idiots need to step up and take responsibility for their actions, which have led us to this point.

    They won’t Kev. You and everyone that support credible science knows of this.

  11. passionlessDrone January 5, 2010 at 16:17 #

    Hello friends –

    I think this is a great paper; it spells out quite clearly that the existing state of understanding is very incomplete and in need of quality analysis. The full version is available here:

    http://pediatrics.aappublications.org/cgi/content/full/125/Supplement_1/S1

    I seriously wish I could have read this paper the day that I was told my son had some red flags; it would have saved my son a year of pain. This is a big, BIG win for kids with autism.

    Gastrointestinal disorders can present as nongastrointestinal problems. For example, Horvath and Perman13 reported disturbed sleep and nighttime awakening for 52% of children with ASDs who had gastrointestinal symptoms (vs 7% of age-matched healthy siblings; P < .001). Children with ASDs who had reflux esophagitis exhibited unexplained irritability more frequently (43%) than those who did not (13%).13,

    Finally!

    Despite the limitations in type and quality of available evidence, the preponderance of data were consistent with the likelihood of a high prevalence of gastrointestinal symptoms and disorders associated with ASDs.

    The panel agreed that to unequivocally answer the important question of prevalence of gastrointestinal dysfunction in this population, prospective multicenter studies need to be performed by using validated instruments and outcome measures administered to persons with a diagnosis of ASD established by accepted methods and appropriate control groups.

    Yes, more study!

    The evidence for abnormal gastrointestinal permeability in individuals with ASDs is limited. Prospective studies should be performed to determine the role of abnormal permeability in neuropsychiatric manifestations of ASDs.

    For a person with an ASD who presents for treatment of a problem behavior, the care provider should consider the possibility that a gastrointestinal symptom, particularly pain, is a setting event, that is, a factor that increases the likelihood that serious problem behavior (eg, self-injury, aggression) may be exhibited. Sudden and unexplained behavioral change can be the hallmark of underlying pain or discomfort.

    The clinical presentation of gastrointestinal disorders in individuals with ASDs may differ from that of individuals with typical development. For example, behavioral alterations can complicate the diagnosis of GERD in persons with compromised communication skills. Expert clinicians have observed that aggressive and self-injurious behavior may be the primary clinical manifestations of GERD in individuals with ASDs, but these symptoms are frequently attributed to nonmedical causes.

    This is what so many parents have been saying; that their child’s behavioral manifestations are being ignored or inaccurately attributed.

    Educational programs designed to increase awareness of medical conditions that can go unrecognized because of atypical symptom presentation should be a priority at meetings of professional societies such as the American Academy of Pediatrics, American Academy of Family Physicians, and National Association of Pediatric Nurse Practitioners.

    Win!

    Given the real hardships associated with implementation of a strict GFCF diet, additional studies are needed to assess risk factors and possible markers that identify individuals who might benefit from these diets. The panel emphasized that parents and care providers should agree on objective measures, which ideally are to be evaluated by blinded observers, to assess the intervention effect as well as a reasonable time frame before embarking on restrictive or unusual diets.

    Perfect! Not only a call to more study, but acceptance that discussions with the care providers can result in a planned trial of deitary change to evaluate for effect. Note: ABA trainers, who are good at collecting data are perfect for blinded observers.

    Because allergic diseases are common and individuals with ASDs may have atypical presentations or difficulty verbalizing complaints, it is important for caregivers to be vigilant in monitoring symptoms and looking for signs of allergic disease. If the presence of allergic disease is suggested by the history or physical examination, patients with ASDs should undergo appropriate allergy testing (eg, skin testing, measurement of allergen-specific IgE levels, elimination diets, food challenges) and gastrointestinal evaluation (including laboratory testing and endoscopy, if indicated), as would be done for patients without ASDs.

    I am in love with the fact that this is in Pediatrics!

    The role of immune responses in the pathogenesis of gastrointestinal disorders in individuals with ASDs warrants additional investigation.

    Yes!

    A few studies have suggested a relationship between gastrointestinal inflammation and gastrointestinal symptoms associated with ASDs. The gastrointestinal tract is the largest immune organ in the body, containing up to 80% of Ig-producing cells in the body. In children with ASDs, immunohistochemistry and flow-cytometry studies have consistently shown marked pan-enteric infiltration of lymphocytes and eosinophils in the gut mucosa.59,61,79,80 Torrente et al61,80 suggested an autoimmune component to the inflammatory response (co-localized deposition of IgG and complement C1q on the surface epithelium of the gastrointestinal tract). These studies suggest an underlying chronic inflammatory process in some individuals with ASDs and co-occurring gastrointestinal disturbances, characterized by NLH, enterocolitis, and mucosal infiltration by immune cells along the length of the gastrointestinal tract. These findings should be considered preliminary and will require confirmation.

    The role of gut microflora in the pathogenesis of gastrointestinal disorders in individuals with ASDs is not well understood.

    http://pediatrics.aappublications.org/cgi/content-nw/full/125/Supplement_1/S1/T7

    Thanks for posting, Kev. Super great news for our kids.

    – pD

  12. lilandtedsmum January 7, 2010 at 23:20 #

    Farmwife2

    My eldest daughter has autism. She also has gut issues. My youngest daughter is NT she has exactly the same gut issues. So your point is?

    Of course nobody is saying that any child’s gut issues should go untreated, but simply that the gut issues are not part of autism. Why does this idea offend you so much? Is it because it doesn’t fit your notion of Autism as the terrible monster that is responsible for all evils?

    I normally refrain from commenting in a personal manner but I have observed you on this and other blogs spouting your harmful, malicious nonsense and personally attacking other parents for their methods. You appear, drop your poison and then disappear never responding to any opposing comments, probably because you are aware that every argument you put forward is flimsy and indefensible.

    I’m sick and tired of you and your cronies continually bleating on about your “anecdotal evidence” and hunches and scare mongering to such an extent that it is costing lives, and delaying the progress of the “real” scientists who are trying to establish the facts.

    You place so much value on parental opinion? Fine! I’m a parent and this is my opinion – you are a despicable arse who should learn to shut up until you manage to develop a few more brain cells and an ounce of humility.

  13. David N. Andrews M. Ed., C. P. S. E. January 8, 2010 at 07:12 #

    “You place so much value on parental opinion? Fine! I’m a parent and this is my opinion – you are a despicable arse who should learn to shut up until you manage to develop a few more brain cells and an ounce of humility.”

    Someone just took my crown!!!! But then, you’re welcome to it… well said, by the way! I doubt there’d be many who disagree…..

  14. Niksmom January 8, 2010 at 12:32 #

    My son’s gut issues were in the picture long before his ASD diagnoses ever came about. The findings of this study/report support what I have believed all along: the two are SEPARATE diagnoses and cannot be lumped together.

    Tip for FW2: If a doctor tells you “Oh, all autistic children do…” (or have, or whatever issue you’re trying to ameliorate which is being ignored by said doctor)…FIND ANOTHER DOCTOR. We’ve “fired” the most highly reputed neurologist in our area (and more) for that very reason. We knew our son’s behaviors were a manifestatio of some horrific pain NOT RELATED TO AUTISM. The ONLY connection has been his inability to tell us what the trouble is.

    @lilandtedsmum *applauding wildly* Thank you. THANK YOU!

  15. Joeymom January 8, 2010 at 14:47 #

    I just wanted to pipe up and say that my son’s diagnosis was not a two-hour appointment of parental anecdotes. OUr developmental pediatrician took time to try to interact with Joey, observing Joey, and really asking us very little until he had done a number of checks and observations. Mostly, he was checking to see if what he was observing was typical for Joey, or attributable to other causes.

    The only “gut issues” we have encountered are a slow-emptying stomach, which is common in my family. Our gastroenterologist thinks it is likely the same issue we see on the outside as “sensory integration dysfunction”, the unusual response to stimuli is just on the inside. But that is still anecdotal as well, and the doctor was very clear about that.

  16. Prometheus January 13, 2010 at 22:14 #

    “Billy” comments:

    “The need to research and consider such issues, and the scientific merit of research into it has nothing to do with what Wakefield did. They shouldn’t be choosing what to focus on based on what is popular within the scientific community. That doesn’t make their integrity any better than Wakefield’s.”

    Sad to say, scientists are merely human – even if they strive to be better than that.

    Except in certain totalitarian regimes, scientists are allowed to decide what they will and will not research, even though they might have to quit their job to enforce that decision. And there are a lot of researchers in the neurosciences and other fields who won’t touch anything connected to autism because the topic is so politically charged.

    Some years past, I approached clinician/researchers to try and form a collaborative effort to properly research the once-tenuous (and now dead) hypothesis that measles virus (vaccine strain) was somehow causing autism. I thought (at the time) that even though there was a very small chance that we would find a connection, that the work needed to be done to counter-balance all the shoddy science done by Wakefield and others. Everybody I spoke with was interested in having the work done but refused to be involved for fear of the backlash from “MMR-causes-autism” activists.

    Not even scientists are immune to threats to themselves and their families.

    While I might wish that certain researchers had more courage, Billy’s assertion that their ethics are no better than Andy Wakefield’s is pure bunk. The reason that these researchers were afraid was because they knew they weren’t willing to “synthesize” the “proper” results in order to “please the crowd”. Andy Wakefield, it appears, didn’t have that sort of moral fibre.

    The sort of “poisoning the well” that Andy Wakefield (and others) has done to autism research is not unique. “Cold fusion” research, which at one time was a respectable (if quixotic) field, has been forever tainted by the “press-release science” of Fleischman and Pons. Now, if someone announces that they are researching “cold fusion” (which does occur – it just hasn’t yet produced a net gain in energy), they are likely to be viewed as a “crank”.

    As for autistic children having gastrointestinal (GI) problems – some of them most certainly do! A fair number of non-autistic children also have GI problems, as do a large number of non-autistic adults. What makes GI problems in autistic (and other non-verbal) people different is that they cannot tell us that their tummy hurts.

    Add to this the frequently atypical behaviors that non-verbal autistic people may exhibit when experiencing pain (i.e. they don’t all curl up and grab their bellies when experiencing GI pain – the “standard” non-verbal expression of GI pain) and you have a true diagnostic problem. Fortunately, there is a growing awareness of this problem and more and more autistic (and other non-verbal) people are being evaluated for GI problems.

    This does not mean that GI problems cause autism – although they may make the symptoms worse (most people – autistic or not – are not at their best when experiencing stomach pain). This also does not mean that autism causes GI problems, any more than autism causes long-bone fractures, even though a significant number of autistic children (and non-autistic children) experience long-bone fractures.

    I think that this consensus is a “win” for autistic people – especially those who cannot advocate for themselves – because:

    [1] It reinforces the message that autistic people need to be evaluated for medical problems and not just have everything disregarded as “autistic behaviors”.

    [2] It might percolate down to those parents who are – or are contemplating – elimination diets (e.g. GFCF, Feingold, etc.) which are unpleasant/unpalatable, time-consuming, expensive and occasionally unhealthy.

    Prometheus

  17. Prometheus January 13, 2010 at 22:20 #

    Note: I have no idea how the “strike-though” ended up in my comment. Just ignore it, if you can.

    Prometheus

  18. davidbrown@openpagepublishing.com January 14, 2010 at 11:19 #

    “Those gut issues are more than real and very debilitating. To claim they aren’t part of some children’s dx of autism is like saying that the fear of going outside, the fear of white noise, the fear of crowds, and any other outside influence on a person’s “autism” isn’t valid.”
    The GI issue is getting trotted out a lot. I find it rather distasteful, precisely becaus I have these issues myself. I have literally CONSTANT abdominal pain: Not bad, generally, but always there. I mostly deal with it by not paying attention do it, and I hardly ever talk about it.

  19. lilandtedsmum January 14, 2010 at 11:27 #

    David

    Nobody is denying that gut issues exist and that they are real and debilitating. AS I mentioned in my previous comment, my autistic daughter suffers with gut issues.

    However, when her Neuro typical younger sister experiences exactly the same gut issues, how can one conclude that the gut issues are part of eldest’s autism?

    Nobody wishes to sweep gut issues under the carpet or to say that they should go untreated, just that they are not caused by Autism.

  20. David N. Brown January 14, 2010 at 21:02 #

    lilandtedsmum,
    I may need to clarify… It’s “curebies” appealing to the GI issue that irritate me. What I can say in my own experience is that I can deal with the problems I have, without disrupting my life with a special diets fishing expedition.

  21. lilandtedsmum January 14, 2010 at 21:08 #

    David

    Apologies! I misunderstood and read the quoted comments as being your own – doh!

    That will teach me to read more carefully before responding in future! ;0)

  22. dr treg January 15, 2010 at 00:44 #

    If children/adults with autism have hyper/hyposenstivity to sensory modalities as cardinal clinical features there is the likelihood that they also have autonomic hyper/hyposensitivity i.e. the altered sensitivity to viscera or visceral hypersensitivity which may result in g-i symptoms without abnormal endoscopy/biopsy results.

    http://ibs.about.com/od/symptomsofib1/a/visceral.htm

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