Autism is a “messy” truth.
It doesn’t have the high blood sugar of diabetes, the uncontrolled cell division of cancer, nor the clear brain degeneration of Alzheimer’s disease.
Autism is a condition (or, more accurately, a number of conditions) with as yet, no clear biological markers, and with behaviours as different as any two humans might have on this earth. This is confusing for parents, puzzling for researchers, and a mighty inconvenience for documentary film-makers.
Autism Enigma
The Canadian documentary The Autism Enigma, which the ABC broadcast last night on Four Corners, presented one theory on the cause of autism. The theory links a number of modern practises, such as immigration and antibiotic use, with gut bacteria and autism.
The documentary left me with a sense of unease. The link between gut bacteria and autism is certainly an interesting area and very worthy of investigation. But the ideas are far more complex – and the research far less advanced – than was presented in the documentary.
I do not question the quality of the science on which this theory is based. Like all research, these studies have good aspects as well as limitations. But the documentary did not mention that the small-scale treatment studies have not yet cleared the first hurdle of scientific discovery – replication – despite having been studied for over a decade. Without replication in large-scale studies, a theory cannot be passed off as reality.
Kerry O’Brien and the Four Corners producers did an excellent job at drawing the attention of the viewers to this fact. However, not all current affairs programmes will have such meticulous standards.
The media and autism
We now know that there is unlikely to be one cause for all of the autisms. The behaviours and biology of individuals with autism are just too varied to stem from the same cause, and to respond to the same treatment.
Some may say that any publicity is good publicity, but I question that wisdom in this case. Unbalanced coverage of one theory in isolation has proved time and again to be unhelpful in medical science. It has the very real potential of generating unnecessary concern and garnering unfulfilled hope.
If this was another condition without a known cause (say, brain cancer), publicising such a preliminary area of research, with all of the knock-on effects of increasing community anxiety, would be considered unethical. I don’t take such an extreme view, but I do want us to think about what effect the reporting of this very incomplete science has on families desperately seeking answers.
The business of autism
One truth that was revealed in the documentary was the “business” of autism.
From the very moment that a child receives a diagnosis (and even before then), families are leapt upon by salespeople marketing therapies and potions that will fast-track their child out of autism. Many of these salespeople may be well-meaning, and hold a deeply ingrained belief that they can better the lives of many. A minority of them are almost certainly not.
Well-meaning or otherwise, the therapies and potions they sell tap into the strongest of human emotions: hope, fear, and perhaps most effectively, parental desire to do anything to help their child.
Documentaries as well-produced as Autism Enigma also tap straight into these emotions. I thank the documentary film-makers for talking about autism, and I commend Four Corners for the sensitive way that the subject was handled.
But I encourage all of us to remember that autism is not a play-thing. These are real people with real lives, who are seeking answers for why their loved one has developed in a different way.
There are many stories around autism: the appallingly long waiting-lists to receive a diagnosis; the enormous cost of therapy; the (in)ability of our society to cater for adults with autism; the extraordinary human stories behind each family with a child on the spectrum.
We shouldn’t shy away from talking about the causes and treatment of autism. But we must always remember to report the entire story in a balanced way, and be mindful of the effect that presenting anything less may have on our audience.
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Comments on this article are now closed.
Brian Fitzpatrick
Citizen
I think it is despicable that this link was discovered more than 10 years ago and that the scientific community at large have basically ignored it! THATS why there hasn't been the large scale study you talk about in your article. Without the traction of prominent people these things don't get off the ground. Yes there may be some false hope there, but if you watched the show I watched last night, I witnessed a little boy improve drastically when given the antibiotic that controlled the strain…
Read moreTom Hennessy
Retired
Research has shown lactobaccilus has evolved to not require iron to survive.
"Lactic acid bacteria are unusual as they have evolved not to require iron"
http://www.bristol.ac.uk/news/2011/7976.html
OTHER bacteria DO require iron and the theory is this iron requiring iron is what is causing the 'overgrowth' of 'bad' bacteria as opposed to the good bacteria lactobaccilus.
"Researchers isolate iron as probiotic blocker during active IBD
Certain probiotic strains underperform in the presence of iron-rich
environments created during the active phase of inflammatory bowel
disease (IBD), UK researchers have found."
http://www.nutraingredients.com/Research/Researchers-isolate-iron-as-probiotic-blocker-during-active-IBD
John Newton
Author Journalist
What better do you have to offer Professor Whitehouse?
Sue Ieraci
Public hospital clinician
Read today's smh, Mr Newton (are you really journalist?)
John Newton
Author Journalist
Yes Sue are you really Public hospital clinician and what is point of comment?
Grendelus Malleolus
Senior Nerd
Seems to me a Journalist might know how to research Prof. Whitehouse's work then ask a meanful question about it.
Sue Ieraci
Public hospital clinician
The point of the question was that a journalist was likely to have seen the smh story.
John Newton
Author Journalist
I stand corrected. I had only read his piece here
Mia Masters
pensioner
The documentary was revelatory and I expected to read nothing else than an article such as this one (right the next morning!), maybe even something better argued and not so hasty?! Will wait for the 'Friends of Science in Medicine' instalment on the issue.
Read morePerhaps the opinion expressed here has something to do with Prof. Whitehouse's own research: if the opinions and theory expressed in the documentary were to be proven valid, the theory and work of Prof Whitehouse has to be invalid, for example…
Grendelus Malleolus
Senior Nerd
"Perhaps the opinion expressed here has something to do with Prof. Whitehouse's own research: if the opinions and theory expressed in the documentary were to be proven valid, the theory and work of Prof Whitehouse has to be invalid, for example, the ability to screen for or predict 'elevated risk of autism' as he discusses the subject in today's SMH"
Mia - your comment appears based on an assumption that scientists fear being proven wrong.
Mia Masters
pensioner
if scientists are human, than YES. But let me add some words from Rinaldo Bellomo, The dangers of dogma in medicine (MJA 195 (7) · 3 October 2011):
"The cognitive “illusion of knowledge” also plays a role. We have to believe we know the answer and that there is only one answer, the one we have. To accept that we do not know the answer, or that other people might know the answer while we do not, is emotionally challenging and calls into question our very professional essence. Best to believe that…
Read moreGrendelus Malleolus
Senior Nerd
Mia - there is also a danger in applying Bellomo's words like a blanket across all scientists - he pointed out a danger, but did not claim that all doctors or scientists blindly apply dogma.
I refer you back to Andrew's 4th and 5th paragraphs where he did not question the validity of the science, but the manner in which the documentary presented it:
"The documentary left me with a sense of unease. The link between gut bacteria and autism is certainly an interesting area and very worthy of investigation…
Read moreDarin B Cairns
Clinical Psychologist
As a practitioner in this field for the last 15 years I have seen so many claims about ASD (lets be very clear - a NON homogeneous group) as if it is one thing for all. The science in this field has been trumped too often by industries who profit off parental desperation. There is a lot of research about predictor variables and therapy efficacy that needs to be done. But that does not make for good media. I hope and even suspect that for 'some' kids with ASD this may be useful. I can cite examples…
Read moreGrendelus Malleolus
Senior Nerd
Darin - I agree, and like you I was left hoping there was something in the research as it would be enormously useful in understanding a least a little more about autism - or the form described in the research, that smaller cohort where a gut flora link may be present. I was pleased that the work stayed well clear of Wakefield's discredited papers and wondered at the time whether many scientists, wary of Wakefield's many wrongs, have steered clear of potentially legitimate work. A quick review of recent papers this morning was reassuring. There is ongoing work in this field.
Sue Ieraci
Public hospital clinician
"The opinion expressed in this article reminds me of the rocky road to acceptance (even consideration!) by the medical community that bacteria might play a role in stomach ulcers."
This example is often misused by people who have not followed the actual history of Helicobacter and its treatment. The scientists involved did not just insist that people pay attention to them - they set about doing the solid research that supported their model. This research was replicated. And, within a couple of…
Read moreMia Masters
pensioner
It has been claimed that the H. pylori theory was ridiculed by the establishment scientists and doctors, who did not believe that any bacteria could live in the acidic environment of the stomach. Marshall has been quoted as saying in 1998 that "(e)veryone was against me, but I knew I was right."[5]
http://en.wikipedia.org/wiki/Barry_Marshall
Both doctors involved in this research were ridiculed, mocked and systematically undermined by the wider medical community in the press. But do not take…
Read moreMia Masters
pensioner
"It just seemed so improbable that this chap who was a registrar … could have [found the cause of peptic ulcers] when it had eluded people for so long," Ellard recalls. "People asked reasonable questions, which Barry answered very scientifically and appropriately, but it was hard to accept."
http://www.smh.com.au/news/national/of-guts-and-glory/2005/10/04/1128191720223.html
Sue Ieraci
Public hospital clinician
As I said before, Mia, the proponents of the highly unlikely theory performed some rigorous research, which was able to be replicated, and now this "highly improbable" model that was previously ridiculed has been universally accepted.
The fact that such dramatic change happened in a relatively short time has benefitted patients with peptic ulcer disease of infective origin (not all of them are).
That is not, however, a reason to jump into changing models on the basis of weak or un-reproducible evidence - it is more likely to be erroneous.
Seamus Gardiner
Citizen
What would be the consequences if every child diagnosed with Autism Spectrum Disorder was given vancomycin based upon the case study displayed in the documentary, I wonder?
Is it not prudent to research this further before blindly administering antibiotics with significant side effects for both the individual and to the community?
Grendelus Malleolus
Senior Nerd
Yeah - I guess you know Sean how essential Vancomycin is as the last-ditch antibiotic and the danger of using it too broadly.
Luke Weston
Physicist / electronic engineer
As is usually the case, sadly, the anti-medicine crackpots will carry on with their conspiracy theories and their anti-vaccination propaganda and pseudoscience... but they will quite happily give autistic children hundreds of injections of all sorts of potent antibiotics, drugs and chemicals - with real potential for side effects - with absolutely no real scientific, medical indication or justification at all, as long as they can make money out of it by selling it as "autism treatment", usually positioning themselves as bravely fighting against the establishment and the "big pharma" conspiracy.
Luke Weston
Physicist / electronic engineer
How can it possibly be justified to administer vancomycin to anybody without a decent standard of scientific, clinical evidence that their pathology is caused by a bacterial infection resistant to anything except vancomycin?
The physicians writing these dodgy prescriptions for autism "treatment" with prescription agents (eg. for vancomycin in this case) should be investigated by the medical boards / regulatory agencies in the applicable country.
Giovanna Scott
logged in via Facebook
Sean I don't think the idea was to give every child with an Autism diagnosis vancomycin. The main idea was how the body reacts to different medication and how delicate the gut flora is to the over-use of antibiotics in this case, for Andy.
Read moreAgain, let me stress that what is good and successful for one Autistic child is not going to necessarily work for the next. Why don't we embrace the work these parents are doing in conjunction with medical professional willing to touch an very sensitive subject…
Bob Buckley
logged in via Facebook
a child with gut dysbiosis should be treated for gut dysbiosis. Many medical professionals do not treat gut dysbiosis in children with autism (which is disability discrimination) ... though it seems many GPs do not treat gut dysbiosis at all (which would be just unprofessional and/or incompetent).
So when gut dysbiosis is present, it needs to be treated ... even when the child also has autism.
The show I saw seemed emphatic that long-term treatment with vancomycin is not an option. I don't recall that the show ever suggested anything other than treating gut dysbiosis in a child with autism/ASD any differently from how gut dysbiosis would be treated in any other child (if it gets treated at all).
I really hope Sean (and others) that you are not suggesting children should be denied access to vancomycin because they have autism.
Seamus Gardiner
Citizen
Bob wrote:
Read more'I really hope Sean (and others) that you are not suggesting children should be denied access to vancomycin because they have autism',
You can descend slowly and surely from your high horse. I said nothing of the kind and any suggestion that I am inferring a denial of vancomycin to a patient (for whom there is an indication) is entirely a construct within your own mind.
I suggested that a person should be denied vancomycin if there is no indication for it (as blind administration…
Keith Thomas
Retired
Great comment, Sean! An object lesson.
Grendelus Malleolus
Senior Nerd
Nope, sticks kids with gut problems need to be treated for those problems - using vancomycin if that is indicated. Using it for purposes other than that where what the original paper's authors warned against.
Personally I would love itif the science panned out and we were able to achieve behavior modification by addressing a gut problem. My fear is that the relationship between the two may be indirect. There are children with autism who have gut problems, but population studies indicate that the numbers areproportionate to the rest of the population. Given that for the most part we are working with children who may be non-verbal, are we seeing an effect of the relief of significant pain and discomfort when we observe behavioral change? That is, the effect of the relief of symptoms rather than a change to the autism itself. To some extent this may not matter - if we can make life better, well and good, but understanding the mechanism is important to getting it right.
Grendelus Malleolus
Senior Nerd
Thank you Andrew for that terrific wrap-up. I watched last night's program with a sense of unease. When they got to the "Autism One" conference segment my partner left the room, unable to stomach the sight of so many snake-oil peddlers preying on families like ours. Like you I felt the basic science seemed sound - but such a small sample in the pilot means that confirmational research is indeed required - and some way to examine what form of autism, and what proportion it represents may be covered…
Read moreNaomi Bishop
Researcher & Lecturer: Cell Biology in Health & Disease
I have left a comment on the previous webpage about this:
https://theconversation.edu.au/the-media-and-the-messy-truth-of-autism-9099
I find it upsetting that research, at such a preliminary stage, is being presented as 'fact'.
Grendelus Malleolus
Senior Nerd
At least Kerry O'Brien was very clear in his preface and conclusion on that issue.
Ricky Robinson
logged in via Twitter
I must have missed the bit pertaining to the "business" of autism, and I'm glad I did.
This article states at least one thing about the documentary that, on my viewing, is incorrect. Assoc Prof Whitehouse says that the documentary did not mention that the small scale studies have not been replicated. In fact, so much Ellen Bolte's frustration seemed to be born of the lack of validation of earlier results and further progress down that route.
I'd have liked this particular article to shed some…
Read moreNaomi Bishop
Researcher & Lecturer: Cell Biology in Health & Disease
Hi Ricky,
If you don't think parents might see this documentary and think it is suggesting therapies, you might also like to see the response to 'similar' topics
accessible by links at:
http://www.emilywillinghamphd.com/2012/08/autism-immunity-inflammation-and-new.html
In particular the bit that goes:
"Lest you think I exaggerate about what people will do at the slightest hint of efficacy in autism, see here, here, here, here, and here. "
(each 'here' is a link).
Ricky Robinson
logged in via Twitter
Hi Naomi,
Thanks for your response. As I said, I'm certain that parents will be drawn to experiment with non-proven therapies in the absence of proven ones. But that does not imply the ascription of efficacy to the treatments on the part of the parents. That merely suggests a willingness to try stuff to see how it goes. In some cases, that might be dangerous. In others, maybe not.
For me the line is crossed when there is scientific evidence that the various treatments cause more harm than good. On that particular note, I don't think the documentary was suggesting that vancomycin should be administered willy nilly to autistic kids. It reported on one case where it had been administered.
Theophania
logged in via Twitter
As a parent of an ASD child and a practitioner in the field, I felt the documentary was well presented, and other than a saddening lack of any reference to the proven efficacy of behavioural interventions, I felt it was clear that it was presenting an emerging and interesting theory that *may* be applicable to *some* autisms.
With a sample size of one, we have seen the impact that additives, food chemicals, and antibiotics have had on the autistic symptoms presented by our son. The behavioural therapy he participated in was first class and had incredible results, and our child no longer "presents" as autistic. Unless we slip up in his diet - and then the loss of eye contact; lack of ability to persist in tasks; aggression; stimming; unbelievable tantrums all come back... until the effects of the food/chemicals wear off. Just like in the rats...
I look forward to more research in this field.
Luke Weston
Physicist / electronic engineer
I'd be very interested to see a blind, placebo-controlled study here, where you give your child food which you believe contains the scary "chemicals" and and otherwise-indistinguishable food which does not and you present a judgement of effects in your child's symptoms.
Theophania
logged in via Twitter
Luke, I understand and once shared your cynicism - as did (note past-tense) my parents, my in-laws, and our friends. As a science-practitioner myself I share your longing for blind, or even double-blind placebo-controlled studies (and they do exist, just not with my son)! As a parent it's easier to do it via an elimination diet and food challenges.
However, we have tested the evidence as best we can, because quite frankly I have NO INTEREST in restricting my child's diet without necessity…
Read moreKeith Thomas
Retired
I do hope people read Theophania's and Giovanna's contributions before they take the opportunity provided by this "Conversation" article to give us their preconceived ideas.
Unlike most others commenting above, I found Professor Whitehouse's article to be pretty thin. He is asking us to be careful and not jump to conclusions based on this Canadian documentary. The Canadian protocol (as I understand it here) is to knock out the existing gut bacteria and then relaunch gut bacteria re-population…
Read moreGiovanna Scott
logged in via Facebook
I agree with you Theophania.
My son was in Vacation Care and when I collected him one day he was so aggressive. When I quizzed them on what he'd eaten they'd flippantly mentioned he'd stolen a bit of popcorn. "But it was only a little piece."
He ended up having a intestinal bleed which was horribly painful for him and the whole family. Thankfully it cleared within the week and didn't need hospitalisation.
I don't think people realise what parents go through for years until they reach a comfortable equilibrium in their kids allowable foods.
You are right we need more rigorous scientific study. I'm just waiting for some brave souls to put their hands up.
Grendelus Malleolus
Senior Nerd
"He is asking us to be careful and not jump to conclusions based on this Canadian documentary"
Why is that a bad thing. As a parent you can bet I am going to be careful and not jump to conclusions - I support Theophania's and Giovanna's comments - but they too have been cautious in their approach and the actions they have taken have been appropriate for their children's unique circumstances. The Documentary did not outline a cure or protocol - it speculated. Dr Finegold and the other authors specifically…
Read moreKeith Thomas
Retired
Thank you for the reference to the 2003 paper by Guarner and Malagelada. It's very useful, although more recent work (published this year) has helped fill in some gaps and, in general, enlarge both our understanding of the human microbiota and the complexity of the microbiome through the stages of human growth and development.
"Not ragging on pro-biotics as such, just on the blind faith in a single individual's approach to using them as a cure-all."
This is an example of what I meant by a…
Read moreGrendelus Malleolus
Senior Nerd
Perhaps not anyone in the conversation, but Dr McBride lists "Autism, ADD, ADHD Depression, Dyslexia, Dyspraxia, Schizophrenia" among the conditions her diet can cure. That is a broad range of unrelated conditions for which she offers testimonials rather than evidence.
Keith, I read the paper prior to posting it up, not sure what you are suggesting I look for in further readings. Regardless f the effectiveness or I effectiveness of probiotics, McBride does not offer demonstrated success and parents are better off holding on to their cash and using it on approaches that work.
Leeanne Antulov
Parent of child with high functioning autism
Dr Whitehouse has provided a balanced and informed response in his article on this theory of the relationship between gut bacteria and autism, and indeed clearly acknowledged the value in additional studies of this type.
As a parent of children with autism, I whole heartedly support medical and scientific research that can help better understand and guide our ASD kids through life - given the difficulties and gifts that a diagnosis of autism brings to a family. My husband and I can totally…
Read moreShann O'Grady
Parent of ASD child / educator
I chanced upon Dr Whitehouse's comments in looking for a link to the 4 Corners program. The program left me not only uneasy but somewhat distressed. With a 8 month old child, and suddenly a sole parent I took the step to return to part-time work. A series of ear infections, including a burst eardrum by not acting more aggressively sooner with an ear infection.. lead my son to being treated extensively with antibiotics from this early age. Along with bouts of gastric reflux, it didnt take much for me to watch this program and have a deep sense of regret in not taking better care of my child and removing him from centre based child care.
Now I can step back a little, but must ask if there is continuing research into the link between antibotic use and effect on gut / brain function and development? It certainly rang true for my experience.
Sharyn Lilley
home maker, chief advocate for two autistic children
I have two boys with very different issues, both diagnosed with High Functioning Autism, and while it seems a number of children on the spectrum have different gut bacteria to NT children, neither of my boys do. Nor have they had much in the way of antibiotics, either in utero, or since they were born. They dont react adversely to preservatives as such, though they form a limited part of their diet because I'm a foodie, and believe fresh is always better. I would truly love to see more research done, because so much of what we are dealing with now is sheer guess work and anecdotal evidence. I know our family would be interested in taking part in a larger clinical research program. As would most of the other parents and adults on the spectrum that I know.
Nicole Farmer
Bank Teller
As a Parent with a 6 yo with Autism with no medical knowledge in this field other than bringing up a child with ASD. I found the story interesting but completely unhelpful to our situation.
Read moreI noticed that the story revolved around 'regressive autism' which was not really highlighted clearly. In the case of our son we believe that he was born with autism as he never reached any of his developmental milestones and showed signs of developmental delay before the age of 1 but we still had to fight for…
Sue Ieraci
Public hospital clinician
Nicole - perhaps the problem is that assistance should be available in the basis of objective need, rather than diagnosis.
It has been said that the tying of assistance to diagnosis is the main reason for the apparent rise in autism incidence, which is actually an epidemic of classification (in order to "qualify" for assistance).
How frustrating that parents need to fight for a label rather than being supported in providing for their child's unique needs.
Grendelus Malleolus
Senior Nerd
Nicole - that is a familiar story! The way diagnosis is carried out varies from state to state - In Western Australia it is done by a team including a paediatrician, diagnostic speech therapist and psychologist. naturally coordinating three professionals takes time and the longest wait for parents is that diagnostic process. Something more streamlined would be welcome.
I agree with Sue's point about assistance on the basis of objective need - that would also ensure that services were provided as and when they are needed, and for children with autism this varies widely, and can be episodic.
Luke Weston
Physicist / electronic engineer
Exactly, Sue.
If assistance for parents wasn't tied specifically to that label, then I'm sure we would see a significant portion of the supposed autism "epidemic" disappear overnight.
Kylie Wilkinson
logged in via Facebook
Re your comments about the "Business of Autism". What about the never ending touting by mainstream doctors and so called specialists. "You are in denial.""He will be like this for the rest of his life." “All you can do is ease his anxiety.” Followed buy offers of pharmaceutical companies drugs of choice. Xanax, Zoloft etc. etc. Are you telling me money and the promotion of their business and products isn't a factor here.
Perhaps if the amount funding was made available into these biomedical researches that is poured into that of those pharmaceutical laboratories, we would see more irrefutable results.
To condemn the research these biomedical scientists and researchers is to condemn our choice and hope of effective treatment for our beautiful and, yes in my boys case, suffering children.
Wasn't penicillin discovered in such a way? Where would we be if hardnosers had condemned that research before it was proven?
Grendelus Malleolus
Senior Nerd
"Wasn't penicillin discovered in such a way? Where would we be if hardnosers had condemned that research before it was proven?"
Fleming's observations were noted, but it wasn't until Florey and Chain were seeking antibacterials that they went back to look at Fleming's work. It took only three years to create antibiotics from penicillin - and there does not appear to have been any "hardnosers" preventing the development.
In terms of "the business of autism" I would be very surprised if most…
Read moreCaroline Spence
logged in via Facebook
Hello, Andrew
Read moreI am grateful when doctors like you respond to the media's interpretation and representation of science. I struggle, however, to see how Four Corners’ decision to book-end a weak and one-sided “scientific” program with brief caveats could be described as “excellent” or “sensitive”-- as though that released them from their journalistic standards of reporting.
You will know, better than me, how poorly "The Autism Enigma" represents scientists' current understanding of autism: the confidence…
Antonio DeBono
Freelance Social Media Consultant
Bear in mind that this is the Australian media we are talking about. As such, brief disclaimers used as a 'top and tail' to this particular doco could be construed as "excellent" and "sensitive" reporting, comparitively speaking.
Guy Curtis
Senior Lecturer at School of Psychology and Exercise Science, Murdoch University
It was an interesting show talking through the one potential area of research.
I noticed in the show that they said rates of autism were going up and they mentioned that doctors being better at diagnosing autism accounted for some of the increase. They didn't mention one fact I find interesting whenever people start going on about the "rise of autism", which is that the better diagnosis has led to more cases of children being classified as autistic and fewer cases of children being classified as mentally retarded. The US figures (see below) rather than showing that "cases" of autism are going up suggest that classification of autism is going up for what would previously have been (probably wrongly) classified as mental retardation. The real number of cases has probably been pretty stable for a long time.
http://photoninthedarkness.com/wp-content/uploads/2009/01/autism_and_mr_cht.jpg
http://photoninthedarkness.com/wp-content/uploads/2009/01/all_proportional.jpg
Bob Buckley
logged in via Facebook
the US figures used to create these plots are way below the prevalence data published by the CDC (see http://www.cdc.gov/Features/CountingAutism/).
Based on more than a single source of information, the author of the recent Nature article (see http://www.nature.com/news/the-prevalence-puzzle-autism-counts-1.9280) said "Shifting diagnoses and heightened awareness explain only part of the apparent rise in autism. Scientists are struggling to explain the rest."
Guy Curtis
Senior Lecturer at School of Psychology and Exercise Science, Murdoch University
Thanks Bob, that's was a very interesting read.
Lisa Hodgson
Director
I've recently read about the gut/psychology connection as it relates to autism. Seems to me many parents have already listened to the message on gut flora while scientists fiddle.
To me, the most shocking revelation from the 4 corners program was that the initial research was published in 2000!
2000 I screamed back at the TV!
Short-Term Benefit From Oral Vancomycin Treatment of Regressive-Onset Autism Sandler, Richard H; Finegold, Sydney M; Bolte, Ellen R; Buchanan, Cathleen P; Maxwell…
Read moreGrendelus Malleolus
Senior Nerd
Lisa,
My question to you would be - why has professor Finegold, notable in his field, been unable to establish sufficient evidence to prove the hypothesis even though his research into this area has been ongoing?
I'm not saying his work is wrong, it is just that the research into this particular area is extraordinarily complex.
"Rather most of the early citations refer to "controversial treatment", "unscientifically supported", "questionable treatment", "sparks concern". The only seemingly…
Read moreLisa Hodgson
Director
Grendelus,
I'm not sure what would count as sufficient evidence?
He seems to have demonstrated the correlation between gut flora and autism well?
Gastrointestinal microflora studies in late-onset autism. Finegold SM. et al. Clinical Infectious Diseases. 35(Suppl 1):S6-S16, 2002 Sep 1.
Real-time PCR quantitation of clostridia in feces of autistic children.
Song Y. Liu C. Finegold SM. Applied & Environmental Microbiology. 70(11):6459-65, 2004 Nov.
Pyrosequencing study of fecal microflora…
Read moreSue Ieraci
Public hospital clinician
There was an interesting review of the area of newborn and childhood gut flora on another thread on this site:
Microbiologist Andrew Holmes said: "Although birth is when we first encounter microbes, the process of acquiring a stable gut microbiota takes time. As any parent knows, an infant’s poo will change dramatically in texture, smell and even colour over the first year and introducing anything new to the diet often precedes an interesting experience. A stable microbial community isn’t formed until we have a fully developed immune system and an adult diet pattern – well after age three."
So-called Gut and Psychology Syndrome is hardly "from a credible source". it is an untested model created by a single individual. As far as I can see, she has not published the results of her interventions.
These are promising areas for research. Good quality research needs to continue to accumulate before people try to sell simple solutions to vulnerable families.
Lisa Hodgson
Director
Natasha Campbell-McBride MD MMedSci (neurology), MMedSci (nutrition). "After practising for five years as a Neurologist and three years as a Neurosurgeon she started a family and moved to the UK." Not credible?
"These are promising areas for research. Good quality research needs to continue to accumulate before people try to sell simple solutions to vulnerable families."
Why do we need complicated solutions Sue? If the diet works as many parents attest to the GAPS diet as well as other dietary…
Read moreGrendelus Malleolus
Senior Nerd
Sue, I am not sure what would constitute sufficient evidence either, but I do know what there is now, is not sufficient because Professor Finegold says that it is not - actually I'd recommend emailing the corresponding author from tht paper and asking their opinion, and perhaps enquire what further research might be underway.
"He seems to have demonstrated the correlation between gut flora and autism well?"
In the small sample of children (and it is just a handful) he certainly does seem to…
Read moreGrendelus Malleolus
Senior Nerd
The opposite of "simple solutions" in this case may not be "complicated solutions" but solutions thwt work. To know whether or not they actually work we MUST do the research. I am so sick and tired of people pushing my family, and others towards every fad magic pill, diet or energy crystal, that do not work and were never going to work. Parents want things that actually work, not give a false sense of hope.
Sue Ieraci
Public hospital clinician
GM - surely you are not confusing me with Lisa? A slip of the keyborad, perhaps?
Grendelus Malleolus
Senior Nerd
Indeed Sue, but a slip of the brain rather than the keyboard I fear
Sue Ieraci
Public hospital clinician
It is hard to imagine that Campbell-McBride has practised as both a neurologist and a neurosurgeon, as the training pathways and practise are very different. I accept that she has qualifications in neurology and nutrition.
What would make her assertions credible would be if they had been thoroughly tested, and then reproduced by others. This is not the case.
Campbell-McBride does not feature in the medical literature - she features on populist websites that sell products - including her own…
Read moreGiovanna Scott
logged in via Facebook
Thanks Dr Whitehouse. I love that the 4 Corner programme stimulated so much well-needed discussion about the MANY MANY underlying issues surrounding Autism. However I felt rather vindicated watching the documentary. My son is very much a "gut kid" and we have spent money and the last 4 years repopulating his gut with good bacteria and following a very healthy food regime (rather than "diet"). It is a very unpopular path we are taking but it is RIGHT for our son. The gut-brain connection is having…
Read moreJames McNabb
Fund Manager
Bizarrely enough, the day before the Four Corners story an entirely different (and even more respectable) media outlet had a story about a theory that pinned autism on something else entirely. And with a similar lack of moderation:
http://www.nytimes.com/2012/08/26/opinion/sunday/immune-disorders-and-autism.html
What's the bet that it's not quite as straightforward as either of these two hypotheses?
Bob Buckley
logged in via Facebook
and there were these "bizarre" stories as well ... http://www.abc.net.au/catalyst/stories/3572695.htm and http://www.economist.com/node/21560559
Teresa Puszka
logged in via Facebook
Are we all to feel remorse for giving our children antibiotics at an early age for ear infections or similar? Does reflux and food intolerance count as gastro intestinal problems related to autism development? So many questions, so much confusion. I was sickened by the show to think that I may have contributed to our son's condition. I have given my child pro biotics in the vague hope that it will prevent the ASD being any worse.
But I must say that by far the most effective treatment has been…
Read moreGrendelus Malleolus
Senior Nerd
"Are we all to feel remorse for giving our children antibiotics at an early age for ear infections or similar?"
No you should absolutely not feel guilt for looking after your child like a good parent. Not getting them treatment for their earlier illness may have resulted in a far worse outcome, and there is nothing from the documentary that demonstrates that antibiotics cause autism by altering gut flora. It was 11 children who were included in the study were recruited because they had both autism…
Read moreGiovanna Scott
logged in via Facebook
Teresa, I still have moments of overwhelming guilt over my son's autism. I don't think that will ever change. From a pure rational perspective, nothing I did during pregnancy or his first year could have predicted his
Autism. Emotionally, for me it works to stay a little guilt-ridden, then I "own" his Autism and I fight harder to find what works and what doesn't.
I think TRUST is the key component in our children's recovery. When they finally trust you, you can achieve so much with them.
Sue Ieraci
Public hospital clinician
Teresa - I hope you can always remember this - anything done in the best intestests of your child should not make you feel guilty.
The danger of untested theories is that implementing them can have more unforeseen harms than benefits.
So, for example, if a scare about antibitocs stopped children getting treatment for bacterial infections, more harm might be caused than ill avoided.
We seem to be living in a time of extreme dogma and comptetitiveness about various aspects of parenting - whether it is birthing, breast feeding, diet, attachment parenting....what a child needs to thrive is a loving and secure environment - not an externally imposed set of ideals.
From your message, it seems that your child is already benefitting from a loving and perceptive family.
Antonio DeBono
Freelance Social Media Consultant
It would appear that Pro-Biotics is the new Anti-MMR.
Sue Ieraci
Public hospital clinician
Very perceptive, Antonio. They appear not to be mutually exclusive, however.
Tom Hennessy
Retired
They've recognised iron as the possible cause of autism.
"Non-protein-bound iron and 4-hydroxynonenal protein adducts in classic
autism."
"Increased levels of NPBI could contribute to lipid peroxidation and,
consequently, to increased plasma and erythrocyte membranes 4-HNE PAs
thus amplifying the oxidative damage, potentially contributing to the
autistic phenotype."
http://www.ncbi.nlm.nih.gov/pubmed/22534237
"Results suggest that the lipid peroxidation biomarker is increased in this cohort of autistic children, especially in the subgroup of autistic children."
http://www.ncbi.nlm.nih.gov/pubmed/16081262
"Excess dietary iron is the root cause for increase in childhood autism and allergies."
http://www.ncbi.nlm.nih.gov/pubmed/12888307
Tom Hennessy
Retired
"“Effect of Propranolol on Word Fluency in Autism”
http://munews.missouri.edu/news-releases/2011/0929-mu-study-finds-promising-drug-treatment-for-improving-language-social-function-in-people-with-autism/
"Iron uptake and release by macrophages is sensitive to propranolol."
http://www.ncbi.nlm.nih.gov/pubmed/16718379
Tom Hennessy
Retired
This is where the mercury AND iron TOGETHER causes autism.
"The Redox/Methylation Hypothesis of Autism:A Molecular Mechanism for Heavy Metal-Induced Neurotoxicity"
http://webcache.googleusercontent.com/search?q=cache:8ckutRndnHMJ:www.crcnetbase.com/doi/pdf/10.1201/9781420068870-c7+%22thioredoxin+reductase%22+autism&hl=en&gl=ca
Sabrina Hannigan
Mother and part time paid work
I don't know where my autistic son would have got his iron from. Like other children with autism, he was fussy about food right from the start and is now still below the lowest percentile on the weight charts at the age of 7. He must have breathed it in!
Tom Hennessy
Retired
There are a few ways he could have gotten his iron.
Iron fortified formula.
Iron taken during your pregnancy.
High dietary iron intake.
Hereditary hemochromatosis.
Sue Ieraci
Public hospital clinician
Don't worry, Sabrina - Mr Hennessy is expressing his layman's obsession with iron overload as the cause of essentially all human illness. Fussy eaters are highly unlikely to be iron overloaded - quite the opposite.
Tom Hennessy
Retired
Quote: Mr Hennessy is expressing his layman's obsession
Answer: I believe you should write to these people , Pecorelli A, Leoncini S, De Felice C, Signorini C, Cerrone C, Valacchi G, Ciccoli L, Hayek J. , and tell them THEY are "obsessed" and how it wasn't YOU who gave her iron during her pregnancy and caused her kid to get autsim when it has been shown you most likely DID. Don't talk about me. Dig ?
"Non-protein-bound iron"
"Potentially contributing to the autistic phenotype."
Grendelus Malleolus
Senior Nerd
Tom - the authors disagree with you.
The paper is clear enough in its conclusions - you cited part of the abstract out of context - have you even read the paper?
In any case how about you contact the corresponding author and ask them if they agree with your original statement that "iron is the possible cause of autism"
Their details are:
Claudio De Felice
Neonatal Intensive Care Unit, University Hospital Azienda Ospedaliera Universitaria Senese (AOUS), Siena, Italy
Corresponding author…
Read moreTom Hennessy
Retired
"Autism spectrum disorders (ASD)"
"ASD and the recognition of Hemochromatosis"
"Currently, a growing number of reports have documented evidence of individuals with ASD displaying impairments associated with a common medical condition called hemochromatosis, a disorder characterized with increased intestinal absorption of iron and the deposition of excessive amounts of iron in multiple organs"
http://www.ericsons.net/526/iron-overload-disease-iod-autism
Tom Hennessy
Retired
You think they are the only ones who have linked iron to autism? That would make you stupid , then , wouldn't it.
Grendelus Malleolus
Senior Nerd
Insults aside - I was responding to your link and your comment that the authors support your view. If you want to introduce additional evidence, go right ahead but since your standard tactic is to dump material you don't understand I believe that engaging with you in constructive discussion is likely to be futile.
You write to the authors and let us know what they say.
Keith Thomas
Retired
We have different views, Grendelus, on the validity of the GAPS approach to ASD conditions, but I have to say I am with you 100% on your approach to informed, civil debate on the internet. Well said!
Grendelus Malleolus
Senior Nerd
Thanks Keith. As far as GAPS is concerned, I wish it did work,many as I said n an earlier comment it may have up the appearance ofworkinginsome children since the relief of painful gut symptoms may well be sufficient to lessen distressing behaviors. What I have not yet seen evidence of is that (some) autism is caused by gut problems. I retain a open mind, and I try not to judge other parents' decisions for treatment, unless they have potential to cause harm. Sadly this includes some biomedical interventions (extreme diets, chemical castration, chelation etc).
Occasionally online stupidity or gross intolerance will make me have "a moment" but fortunately these are rare.
Tom Hennessy
Retired
Quote: Insults aside. I was responding to your link and your comment that the authors support your view.
Answer: You feel you can walk on insults ? You also assume , "they've" , means , the link I posted ? I see where you go wrong. When someone says 'they' you naturally , assume stuff , and then insult ? You must have been thumped quite a few times in your life , I'll assume , from the evidence you presented , lack of civility and social graces.
"They've recognised iron as the possible cause of autism"
Grendelus Malleolus
Senior Nerd
Tom, you are quite the guy to prattle on about social graces. Families don't need advice from people who have a monomaniacal focus on one element as the root of all their ills - particularly when you are demonstrably short on facts and therefore a poor choice of advisor.
You are a troll - there is no other appropriate term. That said, further engagement with you is pointless since no logic or fact will sway you. I wish you well and hope you avoid the slow oxidation that you fear but please don't try to sell your particular lunacy to those who are not buying it.
Comment removed by moderator.
Tom Hennessy
Retired
EVERY one of the diseases mentioned in this article obviously reveal iron , especially the Neurodegeneration With Brain Iron Accumulation (NBIA).
http://www.mdvu.org/library/pediatric/tics/tic_eti.asp
Pediatric Movement Disorders - Tics
•Other: Neuroacanthocytosis; Huntington's disease; Wilson's disease; pantothenate kinase associated neurodegeneration (PKAN, formerly Hallervorden-Spatz disease or NBIA-1); pervasive developmental disorder (autism spectrum)
Tracy Heiss
logged in via Facebook
I didn't see the programme. Was there any discussion of any scientific correlation between maternal age and a child becomming diagnosed with ASD? I was reading an article on Science Daily site that claims :"A 40-year-old woman's risk of having a child later diagnosed with autism was 50 percent greater than that of a woman between 25 and 29 years old". instahttp://www.sciencedaily.com/releases/2010/02/100208102411.htmnces
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