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Defeating Autism: A Damaging Delusion

7 Nov

Dr Mike Fitzpatrick’s new book ‘Defeating Autism: A Damaging Delusion‘ is now available (Amazon: UK, US, Canada). Just as I did for Paul Offit’s Autism’s False Prophets, I’ll give this a short review and a long review.

The short review: Holy shit, this book is good. Go buy it.

OK, so the long review. I got my copy when I was but a few ten’s of pages away from finishing Ben Goldacre’s Bad Science and try as I did I simply couldn’t resist putting Ben’s excellent book aside for the duration it would take me to read Mike’s book. Ben can rest easy in that it took me only a few absorbed and fascinated hours to read Mike’s book and I will thus be back with him shortly.

Mike starts with an overview of what is to come through the rest of the book – a subject delineated overview of the last ten years or so of attempts to defeat autism.

Mike’s son (who coincidentally is the same age as my own) is introduced and we hear of the abject lack of options given to parents in the early 90’s.

The clinic staff were all sympathetic and courteous, but they appeared to have no practical suggestions……We did not return.

It was at this time that Mike came into contact with two names, now steeped in the autism alt-med industry: Paul Shattock and Bernard Rimland. Shattock liked GF/CF and Rimland liked mega-dose vitamins together with anti-oxidants and _also_ the GF/CF diet. However:

I read the papers from Sunderland and San Diego with great interest……To say I was disappointed was an understatement. What immediately struck me about the writings of Shattock, Rimland and their colleagues was that, rather than indicating an innovate approach at the cutting edge of medical science, they revelaed a retreat into the byways and cul-de-sacs of the biological psychiatry of the 1960s and 1970s.

Then, later on, Mike discusses the beating heart of this book – the delusion itself:

I have become increasingly concerned at the damaging consequences of the quest to ‘defeat autism’. The movement that has advanced under this banner on both sides of the Atlantic seeks to redefine autism as an epidemic disease caused by vaccines or some other, as yet unidentified, environmental factor. Despite the lack of scientific support for this theory it has acquired the character of a dogmatic conviction for many who uphold it, in the face of all contradictory evidence.

Mike makes no bones about the fact that he considers (rightly so in my opinion) the quest to ‘defeat autism’ to be damaging on numerous levels. It is damaging financially to parents. It is damaging to relationships. It is damaging to children’s health. But most of all, it is damaging in the attitude that the crusade itself expresses towards autistic people. Mike, I am delighted to report, quotes extensively from Frank Klein and Jim Sinclair and makes nice mentions of Autism Hub bloggers at various times.

To me, this is an ‘autistic friendly’ book. Parents are not given any empowering pity just because they are parents and the voices and opinions of autistic people are given equal space to those who are not autistic. Mike does not try to pretend that everything is rosy in the garden of autism but he does most definitely portray the need to defeat autism as damaging. This is a must read for all parents and all people involved however peripherally in the field of autism.

Evidence of Autism in a Psychiatrically Hospitalized Sample

4 Nov

I’ve been meaning to write something on this for a while. This was a talk given at IMFAR this year (2008) by one of my favorite research groups–that of Prof. David Mandell. If you’ve listened in on IACC meetings you’ve heard him. Much more, if you have been watching the literature, you’ve likely seen his papers.

Prof. Mandell asks a lot of questions that I think are important and, all to often, overlooked. As an example, he has documented the late diagnoses of ASD’s in ethnic minorities in the United States.

One presentation at IMFAR that caught my eye was:

Evidence of Autism in a Psychiatrically Hospitalized Sample

The abstract is quoted below:

L. J. Lawer , Psychiatry, University of Pennsylvania, Philadelphia, PA
E. S. Brodkin , Psychiatry, University of Pennsylvania, Philadelphia, PA
D. S. Mandell , Psychiatry, University of Pennsylvania, Philadelphia, PA

Background: The similarity of the symptoms of ASD with other psychiatric disorders, and the fact that misdiagnosis may lead to inappropriate treatment, has led to interest in the prevalence of ASD in psychiatric populations. The four studies in this area have estimated the prevalence of ASD in adult psychiatric samples to be between 0.6% and 5.3%.

Objectives: To determine the potential prevalence of ASD among psychiatric inpatients and characteristics that discriminate between adults likely to have ASD and other psychiatric disorders.

Methods: The sample included 350 out of 396 patients in one state psychiatric hospital in Pennsylvania. Nursing staff completed the Social Responsiveness Scale (SRS) for each subject. Chart reviews were conducted to examine functioning and medical history. T-tests and chi-square tests were used to examine differences in clinical presentation, putative diagnoses, and medical history among patients scoring above 100 on the SRS (a score highly specific for autistic disorder in the general population) and patients scoring below 100.

Results: Twenty-one percent of patients received an SRS score over 100. They were significantly more likely than other patients to be diagnosed with undifferentiated schizophrenia (30% vs. 22%) and have indication in their charts of childhood onset or a “long history” of psychiatric problems (68% vs. 50%), not starting high school (20% vs. 8%), abnormal movements (20% vs. 10%), gastro-intestinal problems (34% vs. 23%), and mental retardation (15% vs. 5%). Analyses of differences in medication use and self-injurious behaviors are ongoing.

Conclusions:While not conclusive regarding the prevalence of ASD in a psychiatric inpatient sample, these findings are provocative and suggest the need for further research. We currently are conducting patient and family interviews to augment existing data. Improved diagnostic assessment for adults with ASD, especially those that discriminate ASD from the negative symptoms of schizophrenia, may have important treatment implications.

The majority of the overall population had schizophrenia diagnoses (80%), with personality disorder, substance abuse and mental retardation diagnoses also present.

The researchers had nurses test inpatients using the Social Responsiveness Scale (SRS), and found that a significant number (21%) of the inpatients scored in a range indicating an ASD.

3% of those with SRS scores >100 had an existing ASD diagnosis. Compare that to 1% of those with scores <100 on the SRS. But, you can see that with 21%, this inpatient population had a much higher autism rate than the roughly 1% expected for the general population.

Interestingly, there was a higher rate of GI problems in those with high SRS scores.

The ages? These are adults. Not just young adults, either. They ranged in age from 20-82, with an average of 49 (SD of 13) years.

Why is this important? There are many reasons. First, before this study was presented at IMFAR, the results were referenced by one of the world’s top-cited autism researchers, Nancy Minshew, in a news article.

The other phenomenon was that some autistic children were labeled as schizophrenic, and many may have ended up in state hospitals or other institutions, she said.

There is even a kind of logic to that, Dr. Minshew said, because some of the hallmarks of schizophrenia — behaving oddly, a lack of facial expressions, poor eye contact, speaking in a monotone and using fewer gestures than normal — are “essentially the same” in both autism and schizophrenia.

David Mandell, an epidemiologist at the University of Pennsylvania medical school, recently surveyed the adult patients in Norristown State Hospital in Eastern Pennsylvania, nearly all of whom are labeled schizophrenic, and found that about 20 percent of them meet the behavioral criteria for being autistic.

The response? Dr. Minshew was openly mocked by “advocates” who apparently couldn’t see past the fact that these results pose a challenge to the “epidemic”. Kim Stagliano, in a Huffington Post Piece, was annoyed that Dr. Minshew would say that in her experience there is “not an increase in the number of cases, but are an improvement in recognition.” On the age of autism blog, Ms. Stagliano went on to say,

Does your child, or do you (if you are an adult with autism) appear schizophrenic*? Has any doctor or therapist ever uttered the words schizophrenia and autism in the same sentence to you?

This declaration of Dr. Minshew’s is repulsive and offensive to all people with autism. All people with autism, regardless of what you think of cause or treatment.

Amongst the mistakes Ms. Stagliano makes in the above is asking the wrong question. The question is not “do people with autism appear schizophrenic”, but, rather, do people with schizophrenia (and other) deserve diagnoses have autism? Further, are these people misdiagnosed or do they deserve autism in addition to their other diagnoses?

Ms. Stagliano isn’t the only one to attack Dr. Minshew’s statements without thinking them through (Dr. Minshew’s statements made it clear that she was basing her statements on actual studies, not just her opinion). I’d like to point out that I didn’t bring Ms. Stagliano’s comments in as a mere sidetrack. Much as the comments annoyed me, they point to a more important, systematic problem: The “advocates” of the past 10 years have made a big mistake in concentrating solely on children with autism.

First and foremost, it is wrong to the allow fellow citizens to go without proper supports. This is especially true if (as noted in the talk) there is the possibility of de-institutionalizing these people. We must insure that these adults and those who will care for them have a proper understanding of the real issues each adult faces.

Second, it is just plain short-sighted. For parents of children with autism, autistic adults are the great untapped resource. We have much to learn, much that will help our children. It is in our own self-interest to demand that adults with autism be identified so we can learn from their hard-fought lessons.

I don’t know a better way to emphasize this than to restate it: It is in our own self-interest to demand that adults with autism be identified so we can learn from their hard-fought lessons.

[note: I edited this piece for clarity and emphasis after posting. The substance was not changed]

David Kirby clarifies?

31 Oct

David is obviously a reader of this blog or Autism Vox or Respectful Insolence as these are (so far as I know) the three blogs that commented on his claim that thimerosal was no longer the ‘smoking gun’ for autism causation. Here’s the quote from the New Jersey Star Ledger:

David Kirby, a journalist and author of “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy,” said he believed that thimerosal, which still exists in trace amounts in some childhood vaccines, was no longer the “smoking gun.” Several national studies have found no connection, and a California study found that, even after thimerosal was removed from vaccines, diagnoses of autism continued to rise.

Now that’s a pretty unequivocal statement. Even so, David felt the need to clarify on Age of Autism yesterday:

The term “smoking gun” comes from Sherlock Holmes…..[]….To this writer’s mind…….the term means the “one and only cause,”.

I do not believe that thimerosal is the one and only cause of autism.

Now I’m confused. In the quote from the New Jersey Star Ledger David says thimerosal is no longer the cause of autism. In his own quote on AoA he says it is. Here is the quote that uses the words ‘smoking gun’:

The triggers, as I mentioned, might include, unfortunately, everything, and when I wrote my book I was hopeful that maybe thimerosal was the smoking gun. And if we just got mercury out of vaccines, autism would rapidly reduce. And we haven’t seen that happen yet. But I did say if that does not happen then that’s bad news; now we’re back to square one. It would have been so much nicer, and easier, and cleaner to say, gosh, it was the mercury in the vaccines and now we can take it out and the case is closed. That didn’t happen, and we need to look at everything. And as I said, not only the individual vaccine ingredients, but also the cumulative effects of so many vaccines at once.

So, this then as people said to me, is not David saying ‘its not thiomersal’, its David saying its not just thimerosal.

I’m kind of saddened by this. As David himself says:

There has been so much debate over ‘What is THE cause?’ And for a long time in this country, we were fixated on thimerosal, the vaccine preservative, and I share some of the blame for that because my book focused mostly on thimerosal.

Fixated is the right word. Some of us over and over and over were constantly telling people it couldn’t possibly – based on the available data – be thimerosal. And yet this stopped no-one from saying it was. More importantly it stopped no one from chelating autistic kids needlessly for ‘mercury poisoning’ that didn’t actually exist.

David now officially joins with Jenny McCarthy and the new side of autism/vaccines. Its everything. Individual vaccines ingredients and the cumulative effects of so many vaccines at once. My question is why? What we have here is an instance where a hypotheses was tested and failed to be accurate. It took 10 years for people who believe David to get that message. Many still haven’t.

David also claims that his infamous claim about CDDS data in 2005 (that if the thiomersal hypothesis was correct CDDS rates would fall – they didn’t) failed to take into account key confounders –

1) Falling age of diagnosis
2) Thiomersal in the flu shot
3) Immigration
4) Rising levels of background mercury

With all due respect to David these are pretty shoddy. David asks if the caseload could’ve increased between 1995-96 due to recent falling age of diagnosis and aggressive early intervention. I’m not sure that 95-96 could really be considered recent.

As discussed by Do’C on Autism Street, the whole ‘mercury in flu shots’ thing is rather misleading:

…better than 90% of the 5 year olds in the relevant data set were not even vaccinated. Does the increase in flu shot uptake in this age group that occurred after 2003 even matter with respect to the California data? It doesn’t seem likely given that about 80% of kids in the relevant age group are not even vaccinated during the next couple of years. But aside from that, the ones who were vaccinated were decreasingly likely to receive a thimerosal containing flu shot at all.

I’m not sure what to make of the Immigration thing. It makes me feel a bit uncomfortable – its easy to blame ‘the outsiders’ but without any actual science (and I’m not of the opinion that running CDDS data through Excel is science, sorry) to back those beliefs up, it feels like an easy ‘out’.

This rising levels of background mercury thing puzzles me. It may well be happening. David didn’t source the three studies (I imagine one is the Palmer thing) but I don’t see what background mercury has to do with thiomersal? Maybe I’m missing the obvious here.

David went on to describe what mercury can do:

constriction of visual fields, impaired hearing, emotional disturbances, spastic movements, incontinence, groaning, shouting, dizziness, nausea, vomiting, diarrhea and constipation,” (HERE) (otherwise known as every afternoon at the Redwood house, circa 1998 in my book)

That may well be ‘every afternoon in the Redwood house’ but its never been any time of the day in my house. None, I repeat, none of the symptoms David lists form part of the DSM (IV). Whatever it was causing those symptoms every afternoon in the Redwood household, it had nothing to do with autism.

David closes by referring to a study published early this year. He says:

So, despite all the cries of innocence among mercury supporters, the California study authors insist that this trend has not been confirmed.

Not quite. Here’s the quote from the Medical News Today article:

They also cautioned that the evaluation of the trends needs to continue in order to confirm their findings for the children born more recently.

What they’re saying is that their conclusion for the data they’ve looked at is:

The DDS data do not show any recent decrease in autism in California despite the exclusion of more than trace levels of thimerosal from nearly all childhood vaccines. The DDS data do not support the hypothesis that exposure to thimerosal during childhood is a primary cause of autism.

but – quite reasonably – for children they haven’t looked at, they can’t speak for.

David Kirby – Thimerosal does not cause autism

29 Oct

In something of a jaw-on-chest admission, David has finally admitted that thimerosal does not cause autism:

David Kirby, a journalist and author of “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy,” said he believed that thimerosal, which still exists in trace amounts in some childhood vaccines, was no longer the “smoking gun.” Several national studies have found no connection, and a California study found that, even after thimerosal was removed from vaccines, diagnoses of autism continued to rise.

I would go on to say then that the claim that mercury in vaccines ever caused a never-established autism ‘epidemic’ needs to be retracted also. I would further like to see David (who has appeared on TV, Radio and in the press speaking as if thimerosal was definitely the cause) question his previous belief that this was ever a medical controversy.

We need to be clear on this issue. In the US, the idea that mercury in vaccines cause autism is the reason so many parents are not vaccinating their children. David was the chief media spokesperson in this belief and whilst it is gratifying to hear him publicly admit thimerosal does not cause autism – it needs to be proclaimed widely and David needs be much more public than this.

However, its not all good.

But, he said, the links between vaccines and conditions like autism are still strong and more research is needed.

Conditions like autism or autism?

David seems to have moved from targetting thimerosal to simply targeting vaccines in general. Contrary to his statement that there are strong links between autism and vaccines, the fact is that there are none. No decent science supports this hypotheses and (with apologies to David) he has a now self-admittedly bad track record when talking about ‘strong links’ between vaccines and autism. David’s ‘strong link‘ between thiomersal and autism was CDDS data and we all know how that one turned out. I’d ask David to please consider very carefully his ideas about ‘strong links’ of today turning around to bite him in the future. Does international public health really need another three/four year gambol through the wilderness based on a non scientific ‘strong link’ which in reality is simply an opinion?

We all know the recent makeover the vaccine hypotheses has been getting. Generation Rescue now no longer claim that autism is simply mercury poisoning for which the cure is two years chelation resulting in a child 100% neurotypical, no different from their peers. SafeMinds – an organisation dedicated to Mercury in their very name – attack MMR, a vaccine that has never contained mercury. Jenny McCarthy is now on board and gives credence to the idea that an average parent (such as myself) knows more about the sciences of medicine, epidemiology, toxicology etc etc than specialists who have spent years in their field. Whilst at the same time Ms McCarthy simply cannot keep her story straight about incidents from her book or even when her son was recovered or not.

The inconsistencies mount and mount and whilst I am glad that David has admitted the non-role of thimerosal in autism causation this is simply the tip of the iceberg. Are Generation Rescue, SafeMinds, NAA, TreatingAutism, A-CHAMP queuing up to admit the same? Are these same organisation prepared to go back onto the same TV/Radio stations they first proudly proclaimed they knew the cause and had the cure and admit they were wrong? Or will it all continue to be held behind the Emerald City of the new ‘Green Our vaccines where we are urged to never, ever look behind the curtain in case we see the simple, obvious truth about the grand machinations?

Every Child By Two: Oprah, Jenny McCarthy et al

20 Oct

An email from Amy Pisani – a thoroughly charming lady who runs the organisation Every Child By Two – made me nod appreciatively today. I’ll quote it in full:

It has been quite some time since Every Child By Two (ECBT) has asked you to take action on an issue related to immunizations. I write to you today with an urgent request for your assistance in reaching out to the Oprah Winfrey Show to urge that she dedicate a show to the science behind the question of whether vaccines cause autism.

More than fourteen credible studies have been conducted worldwide exonerating vaccines and yet the media and entertainment industry continue to frame this as a debate. ECBT and our public health partners have reached out to Oprah’s producers countless times without success. However, I recently had a lengthy conversation with one of the producers who recommended that we initiate a letter writing campaign by commenting within the Oprah.com feedback section of the website. This information is tabulated to determine whether there is enough interest to conduct follow up shows.

I urge you to take five minutes to fill out the Oprah Winfrey Show online form by following the link below. In your comments, please request that Oprah invite credible scientists and/or physicians to explain the science of vaccines to her viewers. We also would like her to invite parents who have suffered the loss of a child from a vaccine-preventable disease, and a parent of an autistic child who can speak on behalf of the many families that are frustrated over the continued focus on vaccines and their supposed link to autism and the therapies that focus on “repairing vaccine damage”. Please relate any personal experiences you may have with vaccine-preventable diseases or autism. In addition, please refer the Oprah Winfrey Show to Amy Pisani, Executive Director of Every Child By Two, for any follow-up questions.

And finally, please forward this to your family and friends and request that they also reach out to the Oprah Winfrey Show.

https://www.oprah.com/ord/plugform.jsp?plugId=215

An excellent idea. I’d like to see a show that mirrors the one sided show that Jenny McCarthy recently got – the one where she was free to spout off her latest game of ‘cure the Evan‘ (he’s cured, no he’s not, yes he is….) but this time with a careful step by step walk through the science that:

…is largely complete. Ten epidemiological studies [plus two clinical ones and the testimony of Stephen Bustin] have shown MMR doesn’t cause autism; six have shown thimerosal doesn’t cause autism; three have shown thimerosal doesn’t cause subtle neurological problems; a growing body of evidence now points to the genes that are linked to autism; and despite the removal of thimerosal from vaccines in 2001 [and the 10% drop in MMR uptake between 1997-2007], the number of children with continues to rise.

– Autism’s False Prophets, Page 247. Dr Paul Offit.

Compare this hard, clinical, transparent (and thus independent) science with Mother Warrior Jenny McCarthy’s recent evangelical call to arms:

“I made a deal with God,” she explains. “I said, ‘You fix my boy, you show me the way and I’ll teach the world how I did it.'”

Hallelujah! Or whatever. To misquote the Pythons – she’s not the Messiah, she’s just a very silly girl.

Please act on Amy Pisani’s request – do it right now.

McCain courts the autism vote

16 Oct

If you watched the U.S. presidential debates tonight, you heard the “A” word a few times. Yep, Autism.

Senator McCain, who tripped up early in the campaign by giving credence to the thimerosal debate (and, yes, tripped up is accurate since he backed away fast from that stance), is courting the Autism community’s vote.

In discussing his running mate’s credentials to be president (should Mr. McCain for some reason stop being president), Mr. McCain stated:

She’ll be my partner. She understands reform. And, by the way, she also understands special-needs families. She understands that autism is on the rise, that we’ve got to find out what’s causing it, and we’ve got to reach out to these families, and help them, and give them the help they need as they raise these very special needs children.

She understands that better than almost any American that I know. I’m proud of her.

I wish Mr. McCain had more contact over time with the disability community. “She understands that better than almost any American I know”…I guess since she has a child with special needs and a young relative with autism, she has some experience, but wouldn’t it be nice if Senator McCain knew someone in the autism research community? (a guy can dream, can’t he?)

Actually, I really liked the way Senator Obama brought this back to one of his themes in his reply:

I do want to just point out that autism, for example, or other special needs will require some additional funding, if we’re going to get serious in terms of research. That is something that every family that advocates on behalf of disabled children talk about.

And if we have an across-the-board spending freeze, we’re not going to be able to do it. That’s an example of, I think, the kind of use of the scalpel that we want to make sure that we’re funding some of those programs.

For those who didn’t watch, there was discusssion earlier in the debate about a Senator McCain’s proposal for a spending freeze. Senator Obama made the point clear: cut smart, not blindly.

That said, I also liked how Senator Obama brought in the entire disability community. Yes, it was still child focused, but he did talk about “other special needs”.

I like how he sees research as a priority.

Senator McCain later stated:

And I just said to you earlier, town hall meeting after town hall meeting, parents come with kids, children — precious children who have autism. Sarah Palin knows about that better than most. And we’ll find and we’ll spend the money, research, to find the cause of autism. And we’ll care for these young children. And all Americans will open their wallets and their hearts to do so.

I wonder how many autistic adults were in his audiences? I wonder how many people with other disabilities (or family members with other disabilities) were in the audience.

Senator McCain may have thought that he was winning my vote, but he just lost it. Yes, disability issues, especially autism, play a role in my choice. But, this looks too much like pandering to the vaccine-autism crowd while doing the politician’s two-step around the sticky details.

I.e. it was “let’s use code words about the epidemic and vaccines to gather votes”.

I really hope I am wrong, but that was my read.

Senator Obama’s response really did speak to me, though. Focusing on funding research–and research for other conditions besides autism–spoke to goals that match mine, rather than an attempt to buy my vote.

The Los Angeles Times has a full transcript of the debate already.

Also, AutismStreet gathers his thoughts and types faster than I. There is a good treatment of this subject there.

here’s a taste:

She understands that autism is on the rise? Really? Can she clearly convey the distinction between more diagnoses, and an actual increase in prevalence? Does she understand diagnostic substitution? What about the broadening criteria and the changes in the very definition of autism? Does she really understand this? Or, is McCain pandering and simply parroting anti-vaccination and anti-autism advocate fundraisers’ “autism epidemic” rhetoric?

[added material]

I want to repeat: I really hope I am wrong about Senator McCain. Even if he loses the presidential bid, he is a Senator and someone we need to help in the probable lean years ahead–and beyond.

The Truth About Andrew Wakefield

14 Oct

Regular readers will know that an eminent UK scientist writes the occasional guest blog piece for LB/RB. Here is his piece in the wake of the the Lipkin/Hornig study and the amusing claim that it vindicates Wakefield. Enjoy – Kev.

A scientist who has followed the Wakefield saga from the start sets the record straight.

According to recent newspaper reports Andrew Wakefield is planning to publish his account of the MMR/autism controversy next year, under the title The Lesser Truth. He is currently facing charges of gross professional misconduct at the General Medical Council (the case is expected to conclude in April 2009). Meanwhile, Wakefield and his supporters continue to claim that his research is valid and continue to smear the investigative journalist Brian Deer who exposed the conflicts of interest and dubious ethics – as well as the junk science – behind the claims of a link between MMR and autism. But it was Wakefield who was obliged to back down in court from his libel allegations against Deer. Wakefield was unable to contradict Deer’s claim that he has been “unremittingly evasive and dishonest in an effort to cover up his wrong-doing”.

Here are some truths about Wakefield and his research that may not find their way into The Lesser Truth:

Wakefield was never a respected researcher. His first foray into the Lancet was a controversial paper in 1989 saying that Crohn’s disease was due to problems in the blood supply to the gut (vasculitis). But this was wrong. In the early 1990s he was funded by pharmaceutical companies for research along the same lines, mostly in animal models, and produced a series of low-impact, forgettable, papers.

Wakefield first courted notoriety in 1993 when he claimed to have identified measles virus in Crohn’s disease gut tissue. Coincidently, measles virus can cause vasculitis so it is easy to understand how, from 1989 onwards, Wakefield had to find measles in Crohn’s. We now know this result was not possible: there is no measles virus in Crohn’s disease and the antibodies Wakefield used were not specific for measles either. In Wakefield’s own lab, a good molecular biologist, Nicholas Chadwick, could not find measles in Crohn’s by sensitive molecular techniques. However, Wakefield said he could find measles, using crude techniques using flawed reagents. Suppressing data which ruins your hypothesis is scientific fraud.

In February 1996 Wakefield cooked up the idea that MMR was involved in autism with the solicitor Richard Barr and parent activist Rosemary Kessick. He wrote a research protocol to get into the children’s colons to look for measles virus and gut damage, and applied to the Legal Aid Board for £55K.

By October 1996, the Royal Free team had scoped enough children to provide Wakefield with tissue samples so that his technician could look for measles virus in the guts of autistic children by immunohistochemistry. This was clearly research, without clinical or ethical justification.

By spring/summer 1997 Wakefield had enough cases and enough creative data for his story. He believed that autistic children had gut inflammation and most importantly, he believed that he had discovered the cause – measles virus persisting in the gut from MMR. Wakefield first tried to get this study published in Nature but it was rejected.

Towards the end of 1997 he sent an abstract of this work to be presented at Digestive Diseases Week in the USA in May 1998. He also submitted two papers to the Lancet. The first was accepted and published as the now notorious February 1998 Lancet paper. The second, the study claiming to have identified measles virus in the gut by immunohistochemistry, was rejected. To see Wakefield’s pictures of measles virus in the guts of autistic children go here (slides 37 and 38). The second paper was never published and has now mysteriously disappeared, although Wakefield showed it all over North America for years.

In 2000, Wakefield published a larger series on “autistic enterocolitis”, the new disease he claimed to have identified (Wakefield et al 2000 Enterocolitis in children with developmental disorders. American Journal of Gastroenterology 95: 2285-95). Analysis of the data in this paper has revealed that it was a scam: autistic children do not have a chronic inflammatory bowel disease. Normal findings in children were called pathology, pathological results were re-examined and sexed up, and new abnormalities were manufactured, all to make it appear that these children had gut inflammation (MacDonald TT, Domizio P. Autistic enterocolitis; is it a histopathological entity? Histopathology. 2007 Feb;50(3):371-9).

As the litigation in the UK began to heat up around 2000, the defendants (the MMR manufacturers) started to ask simple questions, such as, where is the paper which shows measles in the gut of autistic children? This was part of the MMR/autism story that was rejected by Nature and the Lancet. Who knows why Wakefield never published it? Maybe he realised it was junk since at the same time his identification of measles virus in Crohn’s disease had unravelled. Maybe he knew that the experts for the defence had looked at the data and the methodology and shown it was junk.

Wakefield now hooked up with Dublin pathologist John O’Leary. O’Leary was supposedly an expert in an unsound and discarded methodology called in cell PCR, which he claimed allowed him to amplify measles genetic material in tissue samples, in this case, from the guts of children with autism, and identify its cellular location. He also set up PCR techniques to amplify measles from samples of gut. The O’Leary lab’s studies of Wakefield’s gut biopsy specimens were published in another notorious paper (Uhlmann et al. Potential viral pathogenic mechanism for new variant inflammatory bowel disease. J Clinical Path: Mol Pathol 2002;55: 84-90).

In his testimony to the Omnibus Autism proceedings in Washington in summer 2007, London-based molecular biologist Professor Stephen Bustin showed the utter incompetence of O’Leary and his lab. He revealed the fact that a result was called positive if the sample contained measles virus but no DNA (a biological impossibility). He also revealed that if they analysed the same autistic sample 6 times and got a positive once, the patient was deemed to be positive, even though they were also getting positive measles results out of samples of pure water.

It seems that O’Leary has belatedly seen the error of his ways: in the recently published Hornig study, his lab – in common with other labs in the USA – failed to find measles in samples from autistic children (Hornig et al 2008 Lack of association between measles virus vaccine and autism with enteropathy: a case-control study. PLOS One 3(9):e3140). The attempts by Wakefield and his acolytes to claim that the Hornig study vindicates the Uhlmann paper are preposterous. Distancing himself from Wakefield as fast as is possible for any man of 20 stone, O’Leary cleaned up his lab and did things properly.

A review of the career of Andrew Wakefield is a trawl through the underbelly of science. Wakefield did not do experiments to seek the truth – he did experiments to confirm his own beliefs. He produced junk science for over a decade and did immense damage to patients with Crohn’s disease, and autistic children and their parents. Hopefully the GMC will nail the charlatan, and show some sympathy for the Royal Free clinicians who thought Wakefield was honest. The Andy Wakefield show has now moved to the USA where he can get the attention he craves and he can play the role of the selfless seeker of truth whom the establishment had to silence. Being a victim is a good career move for him. It will help Thoughtful House sell junk therapies for autism to desperate parents and allow Andy to live in a really big house, where he can entertain his showbiz friends. He really wanted to be a famous scientist, but he was rubbish at that, so he had to become (in)famous by other means.

Autism and allergies

8 Oct

ResearchBlogging.orgAllergies are often a topic of discussion in the autism community. Much of the alternative- medicine approach works from the point of acting on allergies. I saw this paper and found it interesting, but wasn’t going to blog it until the PETA campaign (Got Autism) came up using the proposed sensitivity of autistics to casein.

The paper is Atopic features in early childhood autism, by B. Bakkaloglu, B. Anlar, F.Y. Anlar, F. Oktem, B. Pehlivantürk, F. Una, C. Ozbesler, and B. Gökler. As you might guess from the author list, this isn’t a U.S. or western European group. They are from Turkey. I have no reason to doubt the group’s quality, but that fact, together with the fact that the sample size is relatively small (30 autistic and 30 controls), suggests to me that this isn’t going to be the final word on this subject.

That said, the paper looks for allergic hypersensitivity (atopy) in a group of children with autism.

Here’s the abstract:

BACKGROUND: Autism is a developmental disorder of unknown etiology. Sensitivity to dietary and environmental antigens has been considered in its pathogenesis.

AIM: To examine immediate hypersensitivity in early childhood autism.

METHODS: We investigated 30 autistic children (23 boys, seven girls 2-4 years old) for atopic history, serum IgG, IgA, IgM, IgE levels, and skin prick tests (SPT) with 12 common antigens.

RESULTS: Nine/30 autistic children (30%) and 1/39 (2.5%) age-matched neurological controls from the same hospital had a family history suggestive of atopy (p<0.005). No patient in the autism and 28% in control group had symptoms of respiratory allergy (wheezing or asthma) (p<0.005), and 6/30 (20%) autistic vs. 7/39 (17%) control children had history suggesting other allergic disorders (p=ns). Eleven/23 (47.8%) autistic children had at least one positive skin test, similar to age-matched population controls. Serum IgG, IgA, and IgM levels were within age-appropriate limits. Serum IgE was elevated in four patients (13.3%). Specific IgE levels were negative in four cases with multiple SPT positivity.

CONCLUSIONS: This study suggests allergic features based on history, skin tests, and serum IgE levels are not frequent in young autistic children despite family history. This discrepancy between predisposition and manifestation might imply immunological factors or environmental condition

That gives away the punch-line: they don’t see a correlation between allergic features and autism. It’s still worth looking a bit closer at the paper.

They recognize that autism is a broad spectrum, so they attempted to look at a group that was fairly similar:

Many studies examined hypersensitivity or intolerance to environmental and food antigens in autism: however, their interpretation and comparison may be difficult due to methodological differences or anecdotal nature of the information. In addition, autistic spectrum disorders are a mixed group: inclusion of patients of various ages and clinical phenotypes can cause discrepancies, which we intended to avoid by studying newly diagnosed cases with idiopathic childhood autism in a narrow age range.

The study looked at very young children, ages 2-4. Autism was measured by a CARS test. Autistic children had scores from 33-50, with a median of 44.5. Since a score of 30-36.5 is considered “mild/moderate” autism, these data indicates that the children were largely in the “severe” range.

They found that 30% of the autistic children had familial history of atopy, compared with only 2.5% of the control children. However, autoimmune disease was not present in high numbers in the parents. Those two facts are interesting on their own, and if that was the end of the study, I wouldn’t be surprised if it popped up in autism discussion forums. But, another interesting finding is that the atopy is not found in the autistic children.

The questionnaire for allergic symptoms indicated familial atopy in 30% of autistic children and 2.5% of hospital controls (p<0.005) (Table 1). Taken together, 3/30 children of the autism group (10%) and 15/39 of the hospital controls (61%) had a score of at least 1 (p<0.005), and the rate of reported allergic symptoms was 6/30 vs. 7/39 (p:ns). Groups did not differ significantly in early-life environmental factors likely to affect allergic state: area of residence, day care attendance, breast feeding, and birth order. Parental autoimmune disease was present in two autism (vitiligo, psoriasis) and one control case (arthritis) (p:ns). CARS scores of the autism group were 33–50, mean 43.6, and median 44.5.

But, given that my interest level was higher due to the PETA ads using the proposed casein sensitivity of autistics, I wanted to see what sensitivities they found:

Of total 276 skin tests applied, 27 (9.7%) were positive, most commonly against aspergillus and grass antigens, followed by cat fur and D. farinae. Eleven/23 (47.8%) of children who received skin tests had a positive result with at least one antigen and five of them, with multiple antigens. House dust mite sensitivity was seen in three (13%), pollen, five (21.7%), and mold, in six (26%) children.

Serum IgG, IgA, and IgM were within age-appropriate limits according to laboratory standards. Serum IgE was elevated in 4/30 cases (13.3%), all associated with allergic symptoms in the patient or in a family member, or SPT positivity. Antigen-specific IgE tests done in four out of five children with multiple SPT positivity were negative.

So, mold (aspergillus), grass, cat fur and dust mites (D. farinae) were the top. Not casein, not gluten.

Again, do I think this is the last word on autism and allergies? No. But, I do think it is a good example of newer studies than, say, PETA’s reliance on a 1995 paper.

PETA appears to have wanted just enough data to justify their billboard. I join many in the blogging community who found the use of people with autism–the misuse, I should say–abhorrent. Kev has already responded in his own way. It took me a while to find my own, rather obscure, method of response.

I am grateful that the billboard has been pulled. I would hope that PETA would issue an apology as well. I’m not holding my breath.

B BAKKALOGLU, B ANLAR, F ANLAR, F OKTEM, B PEHLIVANTURK, F UNAL, C OZBESLER, B GOKLER (2008). Atopic features in early childhood autism European Journal of Paediatric Neurology, 12 (6), 476-479 DOI: 10.1016/j.ejpn.2007.12.008

Kirby launches torpedo at Verstraeten, sinks Geier

8 Oct

The thimerosal/autism study by Thomas Verstraeten is one of the big targets for those with the vaccines/mercury cause autism agenda. For what it’s worth, Autism’s False Prophets goes into the history of the Verstraeten study and clearly explains the history of that study.  Not surprisingly, the answer is somewhat different than you might find in, say, Evidence of Harm.

In his recent briefing on Capital Hill,  David Kirby took another jab at the Verstraeten study. He tried to assert that (a) the NIEHS claimed that the Vaccine Safety Datalink was unusable for autism studies and that (b) the CDC agreed. He was incorrect, and, luckily, a staffer caught Kirby at it.

Mr. Kirby is trying to explain his actions in a blog post in which he posts an open letter to that congressional staffer.

Let’s consider something here: the congressional staffer, an M.D., knew enough about the subject to catch David Kirby misquoting the NIEHS. I wouldn’t have been quick enough on my feet to catch the misquote.  Now, David Kirby wants to educate this gentleman. Frankly, the information should be flowing the other way. If Mr. Kirby had shown himself open to such education, say when EpiWonk made it abundantly clear (twice) what Mr. Kirby’s mistakes were, perhaps it would be worth the staffer’s time to discuss this with Mr. Kirby. That said, let’s take a look at Mr. Kirby’s letter.

In regards to Mr. Kirby’s misquotes, he has recently “clarified” his position.  He is writing to the Doctor who corrected him in his briefing here:

As you rightly pointed out (and as I concurred that day) I omitted an important detail in regards to Dr. Gerberdings’s letter to the Committee. I regret that, and never meant to mislead people in the room.

It was a rather artless sin of omission.

I think the lesson for me here is that, when you try to cram a two hour presentation into 25 minutes, it is wise to not include very complicated and, as you put it, “somewhat arcane” details that are difficult to explain in such a short period of time. In retrospect, I probably should have focused solely on the NIEHS report itself, and left the Gerberding letter out of the presentation entirely.

Mr. Kiby iscorrect, it is a confusing situation.  There are two documents–an NIEHS report and Dr. Gerberding’s response for the CDC. But, does that excuse misquoting the head of the CDC in his legislative briefing?

Here’s what David Kirby in his capital hill briefing “quoted” the NIEHS report as saying:

NIH: “We identified several areas of weakness that were judged to reduce the usefulness of the VSD for addressing the potential association between exposure to thimerosal and risk of ASD.”

That isn’t in either the NIEHS report or Dr. Gerberding’s response.  Here’s what Dr. Gerberding actually agreed to:

The panel identified several serious problems that were judged to reduce the usefulness of an ecologic study design using the VSD to address the potential association between thimerosal and the risk of AD/ASD.

Emphasis is mine.  But, we’ve already discussed that: Dr. Gerberding didn’t claim that the VSD has reduced usefulness in addressing the thimerosal/autism question. It made a claim that the ecological studies using the VSD had limitations. But, the recipient of Mr. Kirby’s letter would know that.

Back to Mr. Kirby’s open letter: David Kirby is now presenting his own interpretation of the NIEHS report, in place of Dr. Gerberding’s.

As I interpret things, the panel concluded that the database itself suffered from several weaknesses and limitations, which in turn reduced its usefulness for studies of autism risks from thimerosal (ie, Verstraeten) AND ALSO reduced the feasibility of future studies (ie, ecological ones) that are based on data collected within the VSD.

As EpiWonk aptly pointed out, Mr Kirby’s assertion is not the case. The NIEHS panel suggested a number of possible studies on autism using the VSD.  From the NIEHS report:

An alternate future study design that was viewed positively among panel members was a study of a high risk population, defined, in this instance, as siblings of individuals diagnosed with AD/ASD. A sibling cohort from the VSD would allow comparison of AD/ASD risk in siblings as a function of their thimerosal exposure through vaccination and the sample size would lend itself to supplemental data collection. A related study design based on sib-pairs or sets could be used to address discordant ASD/AD status in relation to thimerosal exposures. Another possibility that generated support by the panel was an expansion of the VSD study published by Verstraten et al (2004). The availability of several additional years of VSD data was seen as an opportunity to provide a more powerful test of any potential association between thimerosal and AD/ASD and would enable reconsideration of some aspects of the original study design (e.g., exclusion criteria). A related idea was to conduct a VSD retrospective cohort study using California-based MCOs linked with the California DDS, which would improve the diagnostic data and provide more complete ascertainment. For each of these designs, the ability to link medical records from mothers with those of their children was deemed critical.

As this reader interprets things, NIEHS seems to find that there is quite a bit of value in the VSD for studying autism, including an expansion of the Verstraeten study.

EpiWonk made the point first, but how can the NIEHS say that Verstraeten study design is not a good and that future use of the VSD is not useful, while at the same time suggest expanding Verstraeten?

The bottom line is that there are limitations to using the VSD alone in ecological studies of autism. One can overcome these limitations by going to chart reviews and other methods–as used in Verstraeten et al. and, more importantly, by VSD studies ongoing at CDC (one of which looks at autism).  As noted by Dr. Gerberding:

The VSD currently has a number of priority studies underway to address a range of important immunization safety questions, none of which utilize an ecologic study design. Instead, these current studies, including one study evaluating associations between thimerosal-containing
vaccines and autism, all evaluate individual-level data. This typically involves the review of individual medical charts to confirm the vaccines each individual received as well as the outcomes being studied. Studies using individual rather than group data provide stronger scientific evidence.

Mr. Kirby seems to be neglecting the fact that the CDC’s ongoing study (and the Verstraeten study) is not soley dependent on the VSD for the data.  He seems to be arguing that since the VSD, as a single data source, has limitations, the CDC can’t use it for any study. It’s like saying,

But, let’s take a closer look at what this says….and what Mr. Kirby is saying: The VSD on it’s own is not a good source of data to look at the thimerosal/autism question.

Now, anyone remember all the consternation that has been created by the fact that the VSD is not open to just any outside researcher?  Why should the VSD be opened to, say, Mark and David Geier?  Could they do the individual level data collection needed to make a VSD study valuable?

Apparently not. Recall this study by the Heather Young and the Geiers: Thimerosal exposure in infants and neurodevelopmental disorders: An assessment of computerized medical records in the Vaccine Safety Datalink

This was a study paid for by the petitioners in the Omnibus proceding.   It, on it’s own, was bad enough that EpiWonk disassembled it.  Twice.

The recent Heather Young/Geier paper didn’t look at individual level data.  Any future study by the Geiers almost certainly wouldn’t as well.  Given the argument by the NIEHS, Dr. Gerberding…and David Kirby, the above study and any proposed study by the Geiers on the VSD would be useless.

Some how I doubt Mr. Kirby will make statements confirming that. But, I can’t see how he could hold any other opinion, given the arguments he, himself, has made.

Autism genes = genius

6 Oct

Fascinating report in the Sunday Times yesterday about how the same genes that confer autism also confer the skills necessary for genius:

…a study of autism among 378 Cambridge University students..[]..found the condition was up to seven times more common among mathematicians than students in other disciplines. It was also five times more common in the siblings of mathematicians.

And this from Patricia Howlin:

Patricia Howlin, professor of clinical child psychology at the Institute of Psychiatry at King’s College London, studied 137 people with autism; 39 of them (29%) possessed an exceptional mental skill. The most common was outstanding memory.

She said: “It had been thought that only about 5%-10% of people with autism had such skills, but nobody had measured it properly, and it seems the number is far higher. If we could foster these skills, many more people with autism could live independently and even become high achievers.”

This, to me, is simply confirmation of two things that I believe in – firstly that autistic people have much more ability than people think and that respectful and appropriate education will help and secondly, the scientific method will always reveal the truth sooner or later. It cannot be hurried to be accurate. There is a saying amongst Web Developers when clients ask for the impossible – cheap, fast, good. Pick two. The same thing applies in science I think. You can have it cheap and fast and it won’t be good. Etc, etc.

This is yet more evidence that the continual doom and gloom about autism perpetuated from certain quarters simply isn’t reality. There are, in fact, key skills that our civillisation needs that it seems autistic people have in abundance (try and imagine a world without maths).

Respect, self-confidence, appropriate education. Pick three, please.

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