Action For Autism

Urine Test for Autism

WHAT THE PAPERS SAY

I had hoped that the press would have learned from their experience with Andrew Wakefield and the Great MMR Hoax. Perhaps now they would be more circumspect in reporting “breakthroughs” in the science of autism. But on the evidence of recent reports in the Mail, the Express and the Telegraph it seems my hopes were misplaced. All three papers carried reports on recently published research into Urinary Metabolic Phenotyping and Autism.

The Express story was the shortest and its headline was suitably cautious.

NEW TEST MAY SPOT AUTISM IN CHILDREN

It has all the essentials.

The Mail also maintains a note of caution in its headline

Revolutionary urine test for autism could soon diagnose children with the condition

Its story contains the same elements as the Express but adds that

• The diagnostic process is not only lengthy but also traumatic for young children.
• It is proven that autistic children have different microbes in their gut.
• The test should be available in 5 years time.

Both papers seem to have taken their story direct from the press release issued by Imperial College London. Both make much of the lengthy diagnostic procedures and suggest that a simpler biomedical test could replace these procedures. In this they misunderstand the nature of autism and the problems we face in getting a diagnosis.

At present the problem is not so much the length of the assessment  itself but the time spent waiting between appointments. First you need a referral, usually from a GP. When you finally get to see the diagnostic team there is not a uniform procedure. Then you wait for the report. Then, armed with your diagnosis the real work begins of identifying and accessing whatever services are available in your area. It would be better if everyone got to see a consultant paediatrician or child psychologist along with assessments for speech and language therapy, occupational therapy and a full medical work-up that led seamlessly from diagnosis to appropriate services tailored to the child’s individual needs.

If a urine test can be developed it will be more in the nature of a screening tool. It might conceivably expedite the initial referral but it will not replace the need for a detailed follow up.

THE HYPE

The Telegraph is rather more forthcoming in its headline.

Autism test could make the condition ‘preventable’

This goes way beyond what was claimed in the press release and is based on this quote from one of the researchers, Professor Nicholson.

“Children with autism have very unusual gut microbes which we can test for before the full blown symptoms of the disease come through.
“If that is the case then it might become a preventable disease.”

Professor Nicholson is an eminent and well respected scientist in the field of biological chemistry. But nobody on the research team has a primary qualification or research interest in autism. Dr Yap is a member of the National Autistic Society. Dr Angley is a pharmacist who has turned to autism research and published papers on biomedical interventions for autism. But they appear to have been ill-advised on the present state of academic research into autism, particularly in regard to the gastro-intestinal tract. This may be down to the fact that they offer

thanks also to Dr. D. Granpeesheh (C.A.R.D, Los
Angeles, Ca.) for helpful discussions on the manuscript and
related data.

Doreen Granpeesheh has been a long time colleague and supporter of Andrew Wakefield and her C.A.R.D. organization continues to provide educational services to parents who attend Thoughtful House, the Texas clinic that Wakefield established after his departure from the UK. This may explain the uncritical acceptance of papers by Wakefield and others on the fringe of autism research that informs this paper’s position on a unique disturbance of microbes in the gut of autistic people. LBRB and Countering Age of Autism both discuss the questionable nature of these sources.

Even so, Professor Nicholson is going far beyond the study’s findings with these speculations. He is suggesting that the alleged abnormal microbial environment in the gut is what causes autism. The journalist, Telegraph Science Correspondent, Richard Alleyne extrapolates from this to suggest that

Eventually the link between the learning difficulties and the gut microbes could be established and that could lead to “probiotic” treatments or cures.

It is not always clear to this reader whether Alleyne is expressing his views or paraphrasing Professor Nicholson. Either way, the entire piece displays intense ignorance about autism.

We are told that early intervention can prevent permanent psychological damage. Diagnosis presently occurs after the damage has been done. Early intervention is delayed because it is currently difficult to establish a firm diagnosis until children begin speaking.

But even if we had a reliable urine test at 6 months of age what sort of intervention is envisaged at that age? Glenn Doman’s quackery?

THE PRESS RELEASE

I do not understand why Imperial College issued a press release about this. It is a pilot study. The results are interesting but will not be significant until they are replicated on a larger scale. The study itself is very honest about its limitations and the need for more work. If there is to be a simple test for autism it is still years away.

It is easy to criticize the media for misleading coverage of scientific affairs.But in this case the media seem to have been misled by ICL. The press release begins thus:

Children with autism have a different chemical fingerprint in their urine than non-autistic children, according to new research published tomorrow in the print edition of the Journal of Proteome Research.

No matter how much they qualify this opening statement, that is the headline for any news editor. But is it true? To answer that we have to look at the study itself.

WHAT THE PAPER SAYS

I have read the paper in question. It is not an easy read and I do not pretend to understand all of it, especially the technical discussion of methodology and the statistical analysis of results. But, having read a lot of autism research in recent years, a number of questions occur to me.

Recruitment

Normally studies like this go into some detail about how the subjects were recruited. This is because so many details can confound a study. Are subjects matched for age, gender and socio-economic status? As we are looking at biomedical markers in urine at what time of day was it collected? Were all subjects controlled for diet, supplements and medication? We are not told. Bizarrely, part of the control group was recruited in Switzerland. all the rest were Australian. Why? We are not told.

Results

The “unique fingerprint” claim suggests to a lay audience (and the claim was made in a press release aimed at a lay audience) that they tested the urine and the results showed three distinct results - autistics, siblings of autistics and controls. However, the way they tested showed so many variations between individuals that autism specific variations were not  that obvious. They had to run the results through a sophisticated statistical analysis to identify any significant differences. Different methods of analysis revealed different results.

Visually, allowing for the interindividual variability, the urinary spectra were very similar, but the autistic individuals showed subtle differences in urinary succinate, N-methyl nicotinic acid (NMNA) and N-methyl nicotinamide (NMND) compared to the controls, as evidenced from the median spectra shown in Figure 1.
Multivariate Statistical Analysis of the NMR Spectral

To further explore the metabolic differences between the three groups of participants, multivariate statistical analyses were employed on the full resolution NMR data set consisting of 34 controls, 28 siblings and 39 autistic urine samples to extract useful metabolic information. PCA was carried out on UV-scaled data to identify any inherent differences within the data set. The resulting scores plot of PC1 versus PC2 (Figure 2A) showed no clear differences between the three groups, all pairwise combinations of PCs down to PC3 were examined, which showed no discrimination indicating that the major source of variation in the data was not related to autism, but was rather dominated by interperson variability.

However by utilizing group information in PLS-DA analysis, systematic differences could be observed between the three groups (Q2 ) 15%; R2 (goodness of fit) ) 65.7%). The corresponding crossvalidated PLS-DA scores plot (Figure 2B) showed clear separation between autistic individuals and the controls and partial separation between siblings and the controls.

I take that to mean that when looking at the data for each individual there was not a single feature, a chemical fingerprint, that identified all the autistic individuals. But when they looked at each chemical in turn and checked its prevalence in each of the three groups they did find a statistically significant difference between groups. They may have identified potential fingerprints but they have no reliable way, as yet, of using them to identify autistic subjects.

Interpretation

There is a lot of discussion of how the results may be indicative of metabolic dysregulation that fits with certain hypotheses about possible metabolic pathways in autism, always with the caveat that further studies are required. I feel that this discussion is premature. All the weaknesses above - the over hyping of results and the attempts to present a preliminary study as supporting a hypothesis about the gut and autism that is much disputed and lacking in hard evidence - all this finds its basis in similar overreaching assumptions in the paper itself. Something is going on here in addition to the science that threatens to subtract from any merit the study might have.

And the study is not without merit. It would indeed be a step forward if we could establish biological markers for autism. But any follow up will have to address the waeakneses identified in this excellent commentary from NHS Choices

The research has several limitations:

The researchers point out that, as it is not possible to tell whether these differences indicate a cause or consequence of the disease, further research is needed in a larger group of children over time.
Different statistical analyses had different results, some showing differences in certain chemical levels in autistic children, while others did not.

The researchers did not assess the medications the children with autism were taking for their condition or the diet they were following. Both would affect the chemicals they found in the children’s urine samples.

Finally, these children had already been diagnosed with autism, and the study design was cross-sectional, looking at their urine samples from only one point in time. It is not possible to say whether there would be any differences in the chemicals found in the urine in younger children prior to standard diagnosis, and whether it could be used as a diagnostic tool.

This is encouraging research, but it is too early to say whether this research would be of benefit in terms of providing an additional diagnostic tool for autism in children.

June 6th, 2010 Posted by Mike | journalism, research, science | 8 comments

Blurring the boundaries

Quackademia

There is an article on Science Based Medicine Crank “scientific” conferences: A parody of science-based medicine that can deceive even reputable scientists and institutions that is well worth reading, along with Infiltration of Quackademic Medicine into Mainstream: A pernicious influence.

The articles describe methods whereby practitioners of  Complementary and Alternative Medicine seek to blur the distinction between themselves and mainstream medicine. They reject the substance of science based medicine while hankering after respectability and acceptance by aping its style with their own learned journals, institutes and conferences.

Even better, from their point of view, is when they can position themselves alongside the mainstream as if they are a part of it. And it seems to be working. Boots the Chemist will sell you homeopathic and herbal remedies. The National Health Service Trusts Association maintains a directory of these CAM practitioners, Some hospitals and general practitioners offer these interventions as an additional service. There is even an NHS homeopathic hospital that was refurbished at a cost to the taxpayer of £20 million.

Polly Tommey and the Autism Trust

Of course autism has long been a profitable area for CAM practitioners. But the close links between the anti-vaccine movement and CAM treatments for autism have persuaded most mainstream doctors to give these a wide berth. But for other areas of autism intervention such as education and social care, evidence based interventions are not so well established and CAM practitioners are able to make inroads.

I have previously mentioned The Autism Trust which, on the surface, seems a reasonable organization that wants to provide residential provision and services for autistic adults in purpose built communities it describes as Centres of Excellence. But this organization is the brainchild of Polly Tommey, editor of the Autism File, a magazine that champions the cause of Andrew Wakefield and promotes all manner of CAM treatments for autism. Her husband, Jonathan runs the Autism Clinic which provides many of these CAM treatments. Their plans for the Centres of Excellence include a wellness centre offering all manner of quackery including homeopathy, chelation and hyperbaric oxygen therapy, as well as a training centre and a conference centre promoting these “biomedical interventions.”

Polly Tommey is using the Autism Trust to raise her profile as an advocate for autism. She engineered a meeting at 10 Downing Street with Prime Minister Gordon Brown and his wife, Sarah and was invited to speak at a recent seminar, HOW DO WE BEST ENABLE CHILDREN AND ADULTS WITH AUTISM TO LEAD FULL LIVES ? Meanwhile her continued commitment to anti-vaccine quackery in relation to autism is quietly pushed into the background.

Autism Conference

But it is still central to her agenda as is evident from her most recent venture, an Autism Conference. This is a three day affair with three sponsors.

The Autism Trust sponsor the first day of educational workshops, which looks like quite a good day. OK I could do without the Tommeys’ contributions and one could question the educational value of talks on massage and aromatherapy. But Stephen Shore and John Clements are both mainstream speakers and Sarah-Jane Critchley is Project Head of the Autism Education Trust.

Saturday is more problematical. It is sponsored by the Autism File and is billed as a day of educational and biomedical speakers. Stephen Shore is there again. And there is what looks to be an excellent talk on Autism and Neurodiversity by Tom Berney But Shore’s talk is about transition to adulthood and Berney is talking about adults so it is hard to see how this relates to education. There are the Tommeys again (well it is their conference.) and the financial backer of the Autism Trust, Oliver Jones whose only connection to autism is his 12 year old godson.

Most of the other speakers are committed biomedical interventionists. Ken Bock is a DAN practitioner with no training in autism who was an expert witness for Stephen B. Edelson, a quack practitioner who was sued by a couple who charged that Edelson had defrauded them and negligently diagnosed and treated their autistic child. Edelson settled out of court for an undisclosed sum.

Devin Houston is a biochemist whose main area of research was the effect of marijuana on the brains of lab rats before he went into business selling enzymes that are supposed to help with the digestion of gluten and casein and thus ease gut disorders in autistic children. Paul Shattock remains committed to the gluten casein hypothesis despite recent research that undermines its theoretical basis. Paul is a very nice man who has not exploited parents for financial gain and has also achieved a lot in terms of pioneering autism provision via ESPA and is an honorary vice president of the NAS. That actually makes him more of a problem than a snake oil salesman like Houston. If Paul is backing something it cannot be all that bad. But it is.

Sunday shows just how bad it gets. Billed as a day of scientific research it features Michael Ash, another supplement salesman who boasts a diploma from Patrick Holford’s Institute of Optimum Nutrition. We have Ken Bock again, Lorene Amet, the DAN practitioner from Edinburgh, Wakefield acolytes Stephen Walker and Carol Stott and, topping the bill, the man himself, Andrew Wakefield.

This final day is sponsored by LVS Hassocks, a private residential school attended by the Tommeys’ autistic son, Billy. Their prospectus offers a wide ranging education for children with special needs as well biomedical treatments at £75 an hour. They employ Jonathan Tommey as a nutritional therapist And here we see more blurred boundaries. Apart from Tommey, four of the Friday speakers are employed in some capacity by LVS Hassocks. John Clements is listed as their clinical psychologist, Sarah Sherwood is headteacher, Stephanie Lord is director of special education and Matt Whelan is in charge of personalized learning. I could have understood it if LVS Hassocks had sponsored the Friday education session. But here we have a prestigious school with an eminent team in charge who are attaching their name and their reputation to the thoroughly discredited Wakefield and allowing his ideas a foothold within their own school by employing Jonathan Tommey!

Mistaken or misleading?

Taken together the three days map out a descent from reasonably solid ground to a virtual quagmire of quackery. I wonder how many of the mainstream speakers were aware of the total programme when they agreed to speak? The Tommeys are not above making misleading statements. Jonathan Tommey describes himself as

a member of the British Association of Nutritional Therapists (BANT) and is a registered DAN! Practitioner and is supported as a practitioner by the Caudwell children charity www.caudwellchildren

Elsewhere on his website he uses the Caudwell logo  and again claims that

I am an authorised practitioner for the Caudwell Children and if successful may grant up to £3,000 per annum for services provided by The Autism Clinic including the purchasing of diagnostic tests and supplements. All applications must be supported by myself.

The first time I mentioned this Ben Sutcliffe from Caudwell Children wrote to me to correct any misinterpretation of Tommey’s statement.

Caudwell Children funds many therapies for thousands of children across the UK. The Charity has no formal agreement with The Autism Clinic or any other provider, it funds the therapy requested by the applicant, which has to be supported by a professional medical reccommendation. To find out more visit our website.

Jonathan Tommey does not have a recognized medical qualification so I would question whether he is entitled to provide a professional medical recommendation. He does have a BSc in Nutritional Therapy from the University of Bedfordshire. This is yet another example of the blurring of the boundaries between science and superstition. The Division of Science at Bedfordshire boasts of its

long-standing links to the Institute of Optimum Nutrition

Yes, a properly constituted university science department of a British university accepts Patrick Holford’s ION foundation degree as a basis for its own honours degree.

Dietician or Nutritional Therapist?

There is some confusion about the relationship between dieticians and nutritionists. Dieticians receive clinical training in a hospital setting and are educated at least to  masters level . Nutritionists have a bachelors degree and are employed in the NHS to assist dieticians. They often go on to further their education and become dieticians. Outside the health service the field of nutritional therapy is poorly regulated and the  evidence base for many of its treatments is less exacting than that for the clinical practise of a qualified dietician.

Blurring the boundaries

This article has been all about the blurring of boundaries. Some of my examples might seem innocuous. Does it matter if we regard massage as an educational therapy rather than an optional extra? I think so. I have nothing against healthy eating, massage, yoga, aromatherapy and some of the music and movement programmes that are being introduced into schools. I do object to exaggerated claims for their educational and therapeutic benefits that often invoke sciency sounding principles which are not born out by the evidence. The harm comes when similar sciency claims are used to allow potentially dangerous ideas to inform practice. What if the next proposal is for a detox regime or a decision not to facilitate HPV vaccination in your school?

As we have seen this blurring of the boundaries is not only penetrating schools. It has infected our universities. What price a BSc if you can complete part of it at a quackademic establishment like the Institute of Optimum Nutrition? Despite the recent emphasis on evidence based medicine CAM practitioners are making a living within the NHS. UK taxpayers are funding this nonsense while NICE is rationing access to real, effective treatments using cost/benefit analysis.

I feel sorry for the speakers who, however inadvertently, are now contributing to the Tommeys’ Wakefieldfest at their conference next month. I hope their presence is not used to validate the conference and provide a further boost to the Tommeys’ influence.

A while ago I was due to speak at a conference at which two of the Tommeys’ speakers, Lorene Amet and Paul Shattock were scheduled to speak. I along with others expressed our concern

to find that representatives of the anti-vaccine/unorthodox biomedical campaign have been given a prominent role in the Autism Today conference. These include Paul Shattock (the chair for the opening session) and Lorene Amet and Magdalena Cubala-Kucharska (in the final session). The first day of a conference purporting to provide an update on the ‘diagnosis, management and treatment of autism’ for professionals in the field is thus framed between promoters of pseudoscience.

I was booked to speak at the education session the next day but felt strongly enough that I would have cancelled rather than take part in a programme that had so compromised its integrity. Fortunately the organizers took heed of our objections and the invitations were withdrawn. As a final touch, Mike Fitzpatrick was invited to replace Amet and delivered a bravura condemnation of quackery that was applauded by the professional audience.

This is a biannual event and will be on in Edingburgh next month. Both Mike Fitzpatrick and I shall be speaking. And we will not be blurring any boundaries.

October 12th, 2009 Posted by Mike | Polly Tommey, Quackery, education, health, science | 46 comments

Four years later on biomedical interventions

Next month marks the fourth anniversary of this blog which began life on Blogger on 13th November 2005. This was a reprint of an article criticizing biological interventions for autism that first appeared in the National Autistic Society magazine, Communication. When I migrated to WordPress I took all my posts with me and an occasional old post picks up a comment. Today there was a new comment on my very first post from Adam, the parent of a three year old autistic child.

I have an autistic son (3 years old) and was a real sceptic until I joined some forums where parents swore that their kids got better after some form of biomedical intervention. We finally decided to to go ahead with certain interventions we thought were relatively harmless and recently started giving our son supplements including Omega 3, Probiotic, Vitamin B and C. Altogether it cost us about £100.

It was well worth it as we suddenly had improved eye contact and he started saying words meaningfully. Yesterday we went to a party and my son was really well behaved and played along with other kids, which was totally amazing. I have to mention that he goes to an enhanced nursery. However, the improvement happened right after we started the biomedical intervention that we are believers now.

When I visited Adam’s blog I discovered that he is also a fan of the Son Rise program and has attended one of Raun Kaufman’s lectures.

Let me be the first to congratulate Adam on the progress his son is making. But why give all the credit to a handful of vitamins? His son is attending an enhanced nursery. I assume that means they make special provision for his son to help with language, behaviour and social skills. If he is three he will not have been there for long. Perhaps dad is seeing improvements now because he has had time to settle down and the enhancements are working.

The reference to Kaufman is also interesting. I have had reason to criticize Son Rise in the past, mainly for its marketing methods. But it is based on the principle of acceptance and working with the child on his own terms. It does not treat autism as a result of environmental toxins that can be cured by biomedical interventions.

But Adam read all these glowing testimonials and started on the vitamins and the kid got better so it must be the vitamins. This illustrates perfectly why we need science based interventions for autism. I have visited the forums that Adam mentions. Some of these parents have been trying all manner of supplements for years to little effect. Others report modest success. Some claim to have recovered their child. Was it the pills or something else that worked? We have no way of knowing based on anecdotal evidence and testimonials.

I have read similar tales that go the other way. People stopped the pills or put the dairy back into the diet and nothing happened. The kid was OK. These are equally useless in disproving the claims of the biomedical movement. Anecdotal evidence is useful for raising questions but not for providing answers. For that we need science. And so far most of the science that is coming in does not support the biomedical position.

If we take diet as an example, this is probably the most popular intervention. The theory is that problems in the gut make it hard to digest proteins in wheat and dairy products. They are broken down into peptides that pass through the damaged gut wall and enter the blood stream. From there they cross the blood brain barrier and create havoc with certain neurotransmitters resulting in the behaviours we normally associate with autism.

This is known as the opioid excess theory of autism because Jaak Panksepp, an American neuroscientist observed parallels between the behaviour of animals addicted to opiates and autistic children. His hypothesis was that endorphins in the brains of autistic children were having the same effect as hard drugs in the brains of laboratory animals. Then Reichelt, a biochemist in Norway claimed that he had detected peptides in the urine of autistic people that had this opioid effect. This was taken as evidence that these peptides were also entering the blood en route for the brain.

I used to have a lot of sympathy for this idea but Hunter et al (2003) using much more sensitive methods of analysis has failed to find any association between urinary peptides and autism. Neither did Cass et al (2008).

But people still believe in the diet. If it does help then it cannot be because of the opioid excess theory. That is no longer viable. So we need to know why. If it does not make a difference then we need to know that as well. The diet can be expensive and time consuming. If parents are going to invest time and money in it they want some answers.

Unfortunately Professor Ann Le Couteur at Newcastle University has been unable to obtain funding for her CANDAA study into diet. Now she is carrying out a survey of parents and professionals which may help her in her quest. I cannot help but think that if the anti-vaccine crowd had not taken over the biomedical movement funding agencies would look more kindly on studies like this.

October 5th, 2009 Posted by Mike | biomedical interventions, science | 16 comments

NAS agrees, MMR does not cause autism

Even though the controversy about MMR and autism originated in the UK our National Autistic Society has always tried to steer clear of the controversy on the grounds that we are not a medical charity. This used to be our position. You can still find it in a forgotten corner of the NAS website.

National Autistic Society position statement
The National Autistic Society (NAS) is keenly aware of the understandable concerns of parents surrounding suggested links between autism and the MMR vaccine. The NAS urges continued efforts on the part of the Chief Medical Officer, supported by further authoritative research, to put these matters beyond doubt and allay any remaining public concern.
While there is still no conclusive evidence, it is crucial that health professionals listen to parents’ concerns and respect their views as the experts on their individual children. Some parents experience a lack of sympathy and understanding in the healthcare system on medical issues related to their child’s autism. This urgently needs to be addressed to ensure equal access to services.

But now the NAS has come off the fence. Our new statement begins:

The National Autistic Society (NAS) is keenly aware of the understandable concerns of parents surrounding suggested links between autism and the MMR vaccine. We recognise that the weight of epidemiological evidence indicates that there is no statistically significant link between the MMR vaccine and autism.

The statement could be stronger. To my knowledge there are no epidemiological studies showing a link between MMR and autism. As well as the epidemiology the clinical studies also stack up against the hypothesis. Hornig et al (2008) found

strong evidence against association of autism with persistent MV RNA in the GI tract or MMR exposure.

Baird et al (2008) found

no evidence of a differential response to measles virus or the measles component of the MMR in children with ASD, with or without regression, and controls who had either one or two doses of MMR.

D’Souza et al (2006) found

no evidence of measles virus persistence in the peripheral blood mononuclear cells of children with autism spectrum disorder.

Afzal et al (2006)

failed to substantiate reports of the persistence of measles virus in autistic children with development regression.

I can understand why the NAS has taken so long to adopt its new stance. Within the NAS some of our members have been vocal in their support of Andrew Wakefeld and the MMR connection. Others have been equally vocal in opposing the idea. In the beginning I was undecided. The ham-fisted way in which the government went about reassuring us that MMR was safe was unconvincing and many of us, myself included, were inclined to give Wakefield the benefit of the doubt. See Mike Fitzpatrick’s article MMR: why government reassurances won’t work for one explanation of this widespread mistrust.

Support for Wakefield was more prevalent among parents of autistic children than it was among the general public. Our experience of government agencies in relation to diagnosis and provision for our autistic children was often fractious and confrontational. We bitterly referred to our own triad of impairments, meaning Health, Education and Social Services. The second issue of the NAS sponsored journal, Autism, in November 1997 examined the experience of 1200 families seeking diagnosis and the frustrations and dissatisfaction expressed by many parents.

Little wonder then, that if it was Wakefield versus the Government many of us were willing to give him the benefit of the doubt. The NAS was alert to our anger and was keen to bring us together to campaign for improvements in services. It had no desire to enter a divisive argument over MMR. So what has changed?

First and foremost the campaign strategy has been successful. Things are changing. We are putting autism on the statute books. The government is consulting with the NAS on a strategy for adults. The emphasis is on providing those adjustments and accommodations that will enable autistic people to lead a full and active life as contributing members of society. If some people decide to jump ship over MMR they are jumping from a successful ship.

By way of contrast, one of Wakefield’s staunchest allies is Polly Tommey. Her magazine, The Autism File promotes the MMR connection and a host of biomedical “remedies” that are supposed to reverse vaccine damage and cure autism. Yet her actions belie her words. Her latest project is to set up rural enclaves providing sheltered living and employment for autistic adults away from society.

Second, autistic adults are taking a leadership role in our campaign strategy. When it was just about the parents, as it largely was a decade ago, a diplomatic fudge made some sort of sense. But you cannot fudge the issues with an autistic person. If the science says there is no connection then why don’t we say there is no connection?

Science can cut both ways. Autistic adults insist that they are not damaged or defective. They are different. They do not want research into the causes of autism if the agenda is prevention and cure. But most research into the causes of autism is carried out in order to facilitate prevention and cure.

We managed to fudge the vaccine question for years. That era is coming to an end. Now we face important debates about the nature of autism that cannot be fudged. Autistic adults are challenging the assumptions of scientists and posing their own questions. It is not altogether clear which is the most appropriate domain for these debates: science, ethics, moral philosophy? The three most important books on my shelves at the moment are:

Representing Autism - cultural criticism
Unstrange Minds; remapping the world of autism - anthropology
The Ethics of Autism - philosophy

I am sure that there are other, equally essential works and that they will likely transgress the boundaries of traditional autism disciplines like psychology and neurology. But there again, autistic people of my acquaintance are used to transgressing boundaries (and having their own boundaries transgressed). It is we neurotypicals who become defensive when we are taken out of our comfort zone.

We may be headed for uncomfortable times but I expect them to be far more productive and ultimately satisfying than the necessary but stultifying “autism wars” we have fought around the question of vaccines which should now be over.

September 19th, 2009 Posted by Mike | Andrew Wakefield, MMR, National Autistic Society, adults, science | 6 comments

A Broken Trust: Lessons from the Vaccine–Autism War

11 years after Andrew Wakefield launched the MMR/Autism Hoax at a press conference to publicize his paper in the Lancet vaccination rates in the UK have yet to recover and measles is once more endemic in the UK. We had 1348 cases last year compared to 56 cases in 1998. In the USA MMR coverage remains high but measles is making a comeback courtesy of anti-vaccine enclaves amongst the “worried well” who regard autism as a more serious threat than the infectious diseases that, thanks to vaccines, they have never experienced. In the USA 25 percent of adults believe there is a connection between vaccines and autism. They are more likely to blame thimerosal, a mercury based preservative that used to be widely used in childhood vaccines, (but was never in the MMR triple vaccine) and other alleged pollutants that exercise Green Our Vaccines campaigners.

This situation persists despite the fact that Wakefield’s hypothesis is thoroughly discredited. The overwhelming opinion among scientists and doctors, backed by numerous scientific studies, is that there is no evidence of a connection between MMR and autism. A similar situation pertains with regard to thimerosal containing vaccines (TCVs). Moreover it is now 7 years since all routine childhood vaccines in the USA became thimerosal free. The growth of autism has not abated. This alone suggests that vaccines are not responsible.

Liza Gross discusses the reasons for this in an article published today by PLoS Biology, an open access journal, freely available online. In the article, entitled “A Broken Trust: Lessons from the Vaccine–Autism Wars,” Gross draws on the work of medical anthropologist Sharon Kaufman in an effort to understand

how the idea of a vaccine–autism link continued to gain cultural currency even as science dismissed it.

It is interesting to note both the similarities and the differences between the British and American responses. In the USA the authorities invoked the precautionary principle to remove thimerosal from childhood vaccines. The American Association of Pediatrics (AAP) issued a statement to reassure the public that

This merely served to convince a section of the public that there must be something wrong based upon the nostrum that there is no smoke without fire. In the UK health officials took an opposite stance in relation to MMR, refusing Wakefield’s call for the MMR vaccine to be split into separate shots because there was no evidence to support his claims. Rather than reassure the public, this tough stance was presented as evidence of yet further government intransigence in the face of a potential health disaster and is best understood in the context of the contemporaneous controversy over mad cow disease and the threat posed to humans from contaminated beef.

Kaufman argues that the hold which these narratives exert on the public consciousness goes a long way to explaining why the subsequent efforts by authorities both in the UK and the USA to marshal and present a wealth of scientific evidence has failed to seriously dent public perceptions. 

Gross talked to Paul Offit, who correctly pointed out the need to bridge the gap between public and scientific perceptions of risk. But public understanding has always lagged behind science. The difference today is that public trust in science has been eroded. And the technological revolution that is the World Wide Web means that anyone can go online and find competing voices that are just as “sciency” as the experts we used to rely on. But these online health gurus make their living by being persuasive, not necessarily by being right.
What they have is a story with more narrative power than the strictly factual accounts of their scientific gainsayers. Offit understands this. It is why he has turned down requests to appear on any show with Jenny McCarthy, who uses her celebrity status to promote the anti-vaccine message.

‘‘Every story has a hero, victim, and villain,’’ he explains. ‘‘McCarthy is the hero, her child is the victim—and that leaves one role for you.’’

Gross ends with Rachel Casiday, a medical anthropologist in the UK who believes that the answer is for scientists to counter attack with narratives of their own.

Casiday suggests providing an alternative, science-based explanation or relating emotionally compelling tales about counter-risk—such as helplessly watching a young child die of a vaccine-preventable disease—in the same narrative format.

My only criticism of this article is that it can be seen as perpetuating a myth, a narrative if you like, about science being beyond most people. We rely, not upon our understanding, but upon the expert status of others in order to guide our actions. When experts are competing for our attention it is those with the most compelling narratives who prevail. Therefore the real experts need to beef up their image and their presentation skills and beat the self-styled experts and lifestyle gurus at their own game. 

There is another story that needs to be told. The anti-vaccine movement did not emerge without challenge. The real experts may have missed the signs and failed to counter the contrarians until it was almost too late. But a number of parents of autistic children together with autistic self advocates have been meeting the challenge of the anti-vaccine movement online on email lists, in newsgroups, blogs and the latest social networking sites.

We do not think of autism in terms of epidemics and public health disasters. We want help to deal with the consequences of autism rather than its alleged causes. We believe that social models of disabilty have at least as much to say about autism as medical models. We need to celebrate and encourage autistic strengths while acknowledging the very real difficulties that face autistic people and their families. 

Some of us have a professional as well as a personal involvement in autism. But most of us do not. That has not stopped us from grappling with the science in order to marry the narrative of our lives or our children’s lives to the scientific evidence in order to create new stories. If the professionals would take heed of our stories they would be better placed to challenge the pity party mentality of those who would demonize both science and autism to the detriment of both. And, who knows, perhaps together we can create positive outcomes for our narratives. 

May 26th, 2009 Posted by Mike | journalism, science, vaccines | 6 comments

Autism Omnibus: MMR - the evidence.

Throughout the entire Autism Omnibus Proceedings (OAP) the decision about whether or not vaccine strain measles virus had caused autism depended on a simple, verifiable fact. Could the petitioners show that vaccine strain measles virus had persisted in the bodies of autistic children? Special Master Hastings who heard the initial test case of Michelle Cedillo devotes 45 pages of his Decision to reviewing the evidence for this. (pages 40 -85)

Specifically, the petitioners’ primary expert concerning the causation of autism,  Dr. Marcel Kinsbourne, made it clear that his opinion in any individual case would depend upon the existence of a reliable laboratory finding of persisting vaccine-strain measles virus in the body of the individual in question. (Tr. 1180A, 1183A, 1196A.) Similarly, the petitioners’ primary expert concerning the causation of chronic gastrointestinal dysfunction, Dr. Arthur Krigsman, also specified that his opinion in any individual case would depend upon the existence of such a reliable laboratory finding of persisting vaccine-strain measles virus in the individual. (Tr. 531-33A, 538A.)

A Reliable Test for Persistent Measles Infection?

A logical consequence of this is that petitioners would have an interest in establishing the reliability and validity of the testing carried out by Professor O’Leary’s team at the Unigenetics Laboratory in Ireland on biological samples taken from Michelle Cedillo and other autistic chidren. Equally, the respondent would wish to challenge its reliability and validity. In addition to the testing carried out for the purpose of litigation the O’Leary lab had also carried out testing for research that was peer reviewed and published in academic journals. Of particular relevance was the paper by Uhlmann et al (2002) in which O’Leary’s team utilized the same PCR techniques that were used to test Michelle Cedillo’s sample.

In order to find measles RNA in the tissue samples they had to use a technique known as polymerase chain reaction (PCR). In PCR testing you use a primer that is known to react with your target material to amplify the target material, in this case measles RNA. But you have to perform additional tests to ensure that your primer is identifying measles RNA and only measles RNA. You have to determine that your primer is specific to the task and that there are no false positives.

When D’Souza et al (2006) tested autistic children’s blood for measles RNA using the same methodology as described in the Uhlmann paper they found lots of measles. They found it in the autistic children and the non-autistic controls. So they performed additional tests which filtered out most of the false positives. Then they carried out a “gold standard” test known as sequencing which eliminated all seven of the nine remaining samples which were able to be successfully sequenced. They concluded that none of their samples contained measles virus. They also concluded that the Uhlmann study was equally unlikely to have detected measles RNA because the primer was not specific enough to distinguish measles RNA from human DNA.

There is an obvious problem with applying the D’Souza findings to the Uhlmann study and by extension, to the reliability of the O’Leary lab in relation to Michelle Cedillo. De Souza found measles in nearly all their samples. If O’Leary was similarly unreliable why didn’t they find measles in their non-autistic control group?

Three expert witnesses for the respondent: Drs. Bustin, Rima and McDonald- offered a possible explanation. All agreed that procedures at O’Leary’s lab were error prone and liable to contamination and false positives. Dr. Bustin and Dr Rima also found evidence of alterations to laboratory records which, according to the testimony of Dr Bustin, were certainly improper and perhaps fraudulent. There were other problems.

For example, sometimes the guidelines of the testing equipment manufacturers were not followed, which could erroneously make negative results appear to be positive results and disregard for accepted procedures that seemed calculated to deliberately generate false findings of measles virus in some cases.

This led Special Master Hastings to note that

Dr. Bustin’s testimony suggested the possibility that the Unigenetics personnel might have been deliberately using incorrect settings on their testing machine, in order to generate “positive” results that might support the MMR/autism causation theory. (Tr. 2009-11A.)

Dr McDonald stopped short of alleging deliberate fraud but concluded that

I have had the opportunity to examine the majority of those so-called positive in cell-PCR slides and discovered worrying discrepancies between the methodologies reported in the Uhlmann et al paper and what was actually done in the lab. The technique is completely unreliable with an unacceptably high experimental failure rate, many of the control sections were destroyed during the processing, the wrong technical controls were being used, and the claims of positivity or negativity were subjective and spurious. In cell-PCR does not detect measles virus in the lymphoid tissue of children with autism.

In the face of detailed and damning testimony like this the assertions of the petitioners’ witnesses that they were satisfied with the reliability of the testing carried out at the O’Leary lab were not persuasive.

Shooting the messenger

Although the petitioners had failed to provide any evidence for persistent measles virus they still defended the hypothesis by criticizing those studies like D’Souza that called the hypothesis into question. This has been a common feature of both the Omnibus proceedings and the wider debate about vaccines and autism. The vaccine blamers seem to operate on the totally unscientific basis that once they have presented a plausible hypothesis it is up to their critics to provide proof positive that the hypothesis is false and any perceived flaws in these critics’ arguments are assumed to strengthen the hypothesis. I am sure there is a name for this sort of logical fallacy. The only thing that can strengthen a hypothesis is data.

Nevertheless, Dr Hepner for the petitioners

stated that the failure of the Afzal and D’Souza studies to replicate the findings of the Uhlmann study was probably due to two factors. First, in those Afzal and D’Souza studies, the authors tested certain blood cells of the children, not intestinal tissue as did the authors of the Uhlmann article. Second, the Afzal and D’Souza studies tested autistic children, but not autistic children with gastrointestinal dysfunction as was the case with the Uhlmann testing. (Ex. 63, pp. 4-5; Tr. 629A-31A.)

I am not a scientist. But it seems self evident to me that if measles virus is persisting in the gut of autistic children and infecting their brains it would be remarkable if it was not also found in their blood. And D’Souza did carry out a further study on intestinal material with similar results. Furthermore the architect of the MMR/autism hypothesis, Andrew Wakefield, took part in a study that used PCR to detect measles RNA in the blood of autistic children.

Kawashima H, Mori T, Kashiwagi Y, et al. Detection and sequencing of measles virus from peripheral mononuclear cells from patients with inflammatory bowel disease and autism. Dig Dis Sci 2000;45:723–9.

The second criticism, that other researchers have not tested autistic children with GI dysfunction and this explains their failure to detect measles in the children, misses the point that D’Souza did find measles when he used the same techniques as the O’Leary team but these were false positives. Where is the data to support the petitioners’ case? It is not enough to query the studies that contradict your hypothesis. You need some positive evidence as well. The best that Dr Hepner could do, apart from defending the Uhlmann study, was to point to research of her own that has still not been published so we only have her word for it.

Finally, Dr. Hepner pointed to a study that is currently in progress, conducted by herself and several others, to which I will refer as the “Walker study.” She stated that the “preliminary data” from that study “present another step in support” of the proposition that the measles virus persists in the intestinal tissue of autistic children. (Ex. 63, p. 5; Tr. 634A-35A.)

Absence of Evidence

The petitioners not only failed to provide any reliable evidence for persistent measles infection. They also neglected to provide any evidence that the measles they thought they had detected was vaccine strain measles. This surprising omission drew this comment from Special Master Hastings.

The petitioners in this case, of course, need to demonstrate not only that Michelle Cedillo and other autistic children have persisting measles virus in their bodies, but that such persisting measles virus is vaccine-strain measles virus, i.e., derived from an MMR vaccination rather than from the natural, “wild” form of measles virus. The Uhlmann article, however, does not even purport to show that the measles virus, which was claimed to have been found in the children’s biopsies, was vaccine-strain measles virus. Similarly, the specific Unigenetics test of Michelle Cedillo’s tissue purported to identify only measles virus, not vaccine-strain measles virus.

The fact that the petitioners were unable to provide any evidence that vaccine strain measles virus had persisted in Michelle Cedillo or any other child for that matter left them trying to argue that the hypothetical possibility that MMR could cause autism was more probable than not. (The fifty percent plus a feather argument)

Hypothesis versus data

Case reports often suggest a hypothesis that has the power to explain novel situations. Autism emerged from case studies published contemporaneously but independently by Kanner in the USA and Asperger in Austria. But many hypotheses are generated in science and only those that are supported by data from systematic investigations will prosper. The MMR/autism hypothesis has been around for at least ten years since Wakefield’s paper in the Lancet. Unfortunately for the petitioners, most of the data has piled up against the hypothesis, as was evident from the proceedings in the Vaccine Court.

Vaccines have not always been with us and many parts of the world still do not have adequate supplies. So the obvious question is, “In the absence of vaccines does wild strain measles virus cause autism?” The answer is no. Measles virus can persist in the body and it has been known to infect the brain, often with fatal consequences. But there is no evidence that it has ever caused autism.

Perhaps the vaccine strain, because it is weaker than the wild strain, could cause autism instead of killing you. It could enter the brain, cause an inflammatory reaction and the resulting brain damage could cause autism. Perhaps. But the argument is very weak. Inflammation is associated with some cases of autism. Measles can cause inflammation. But it is quite a stretch to speculate on that basis that vaccine strain measles infection causes an inflammation that leads to autism. Special Master Hastings actually described the petitioners’ theory as speculative and dismissed it because of expert testimony like this on page 89 of Cedillo.

• This “is not biologically plausible.” - Dr Griffin.
• It would require a “new biology.” - Dr Ward.
• It “does not follow any [known] biologic model of a measles infection of the brain” - Dr Wiznitzer.
• “We understand especially what measles virus may or may not do within the nervous system,” and that knowledge is incompatible with the theory that the persisting measles virus would cause autism. - Dr Rust.

Rectifying an anomaly

And that is it really. A biologically implausible theory with no factual evidence to support it was allowed to drag on for seven years. The costs must run into millions of dollars. The real cost is in the damage this case has done to confidence in vaccines.  Vaccine preventable diieases are making a comeback and measles is leading the way.  There is also the cost to the families who believed this theory and, in addition to the legal expense that many will have incurred, there are the medical costs of  the remedies sold to them by the same quack doctors who promoted the theory in the first place.

I am also struck by a curious anomaly. The petitioners’ case has always stressed that it is persistent vaccine strain measles virus that is causing autism. Because they thought they were detecting measles RNA in children many years after their vaccination they argued that it was the persistence that led to autism. This suggests a chronic, debilitating effect rather than an acute episode leading to immediate regression. Yet the petitioners argued for just such an acute episode within days of the vaccination in the case of Michelle Cedillo.

If that was the case there was no need to prove the persistence of measles virus. It did not need to persist in order to have the stated effect within the time frame as described by Dr Kinsbourne. Readers may recall that for years prior to joining the Omnibus Proceedings, the Cedillo family and their principle expert witness, Dr Kinsbourne, believed that Michelle had suffered a table injury. That is, she had suffered a recognized injury as a result of MMR vaccination. It is quite feasible that such a claim would have been accepted and Michelle would have won a settlement.

I see no way to rectify this particular anomaly in Michelle’s favour. But I do hope that when they decide on costs, the special masters take into account the quality of legal work and the standard of the expert testimony offered and match the payments accordingly. My next post on the Omnibus will look at some of these so-called experts, notably Krigsman and Bradstreet, in more detail.

March 11th, 2009 Posted by Mike | MMR, autism Omnibus, science, vaccines | 7 comments

Autism Omnibus - Cedillo family loses

The Verdict

Ten years after first petitioning the United States Court of Federal Claims, aka the Vaccine Court, the Cedillo family have their answer.

After studying the extensive evidence in this case for many months, I am convinced that the reports and advice given to the Cedillos by Dr. Krigsman and some other physicians, advising the Cedillos that there is a causal connection between Michelle’s MMR vaccination and her chronic conditions, have been very wrong. Unfortunately, the Cedillos have been misled by physicians who are guilty, in my view, of gross medical misjudgment. Nevertheless, I can understand why the Cedillos found such reports and advice to be believable under the circumstances. I conclude that the Cedillos filed this Program claim in good faith.

Thus, I feel deep sympathy and admiration for the Cedillo family. And I have no doubt that the families of countless other autistic children, families that cope every day with the tremendous challenges of caring for autistic children, are similarly deserving of sympathy and admiration. However, I must decide this case not on sentiment, but by analyzing the evidence. Congress designed the Program to compensate only the families of those individuals whose injuries or deaths can be linked causally, either by a Table Injury presumption or by a preponderance of causation-in-­fact evidence, to a listed vaccination. In this case the evidence advanced by the petitioners has fallen far short of demonstrating such a link. Accordingly, I conclude that the petitioners in this case are not entitled to a Program award on Michelle’s behalf.

(Office of Special Masters 98-916V (henceforth Cedillo 2009) pages 173-174)

This is what I feared would happen back in June 2007 when the case finally came to court. I wrote a post entitled Autism Omnibus - a disaster for the parents which ended thus:

The family have my complete sympathy. I do not blame the parents for believing their lawyers’ arguments and accepting the claims of these so-called experts. But if those lawyers and their expert witnesses are laughed out of court what will happen to the Cedillo family and all the other families relying on their case? Do the anti vax campaigners have their own Anti-Vaccine Injury Compensation Fund to help the families left high and dry in the wake of their failed agenda?

I have just finished reading all 174 pages of the judgement by Special Master George L. Hastings Jnr. in the case of Michelle Cedillo and it is a damning judgement on the expert reports and testimony presented by the  Cedillos’ legal team. It also offers many useful insights into the background to the omnibus proceeedings and the conduct of all the parties concerned. Unless otherwise indicated all references are to Cedillo 2009.

The Cedillo family

Michelle Cedillo was born August 30th, 1994. She received her MMR vaccination on December 20th, 1995. Within a week she had a high fever that subsided and then returned, necessitating a visit to the doctors. Three months later her doctor noted that since this illness she was talking less.  In July 1997 she was diagnosed with severe autism and profound metal retardation. Michelle has also suffered from gastrointestinal symptoms including constipation, diarrhea and reflux, as well as arthritis, uveitis, pancreatitis and epilepsy.

Michelle’s family suspected vaccine damage and entered their claim in December 1998. The initial expert reports, filed in 2001, were for a table injury. Table injuries are recognized side effects of vaccines. If a parent can demonstrate that a table injury occurred within the specified timescale following vaccination they will usually be compensated. It is not necessary to prove that the vaccine actually caused the injury, only that it is plausible. In looking at the balance of probabilities this requirement has been described as 50 per cent plus a feather. The burden of proof is much less onerous than in a civil court.

Then, in January 2002 the family were persuaded to change their claim from one of table injury to one of causation-in-fact. To win a claim like this one has to demonstrate that an injury that is not included in the table of injuries was, nevertheless, vaccine induced. The burden of proof is greater than in a simple case of a table injury. But the standard of proof remains “50 per cent plus a feather.”

I do not know the basis for the Cedillos’ original table injury claim. According to the National Vaccine Injury Program Factsheet it could have been any of the following consequences of MMR:

Encephalopathy, Chronic Arthritis, Thrombocytopenic purpura,
Vaccine-strain measles viral infection in an immunodeficient receipt.

But not autism. I wonder if the Cedillo family know that the arthritis reaction to the Rubella component of the MMR was first established as a table injury by Special Master George L. Hastings, who presided over the Cedillo case, following an omnibus proceeding in 1993. The Petitioners Steering Committee certainly did because they cited it as a model for the Autism Omnibus. (Cedillo 2009, page 16)

Special Master George L. Hastings’ expresses a high opinion of the Cedillo family. It was reasonable for them to believe their daughter’s ill health was a result of vaccine damage. It was reasonable for them to seek legal advice and to be guided by the health care professionals provided to them. Unfortunately their legal/medical team seem bereft of reason. It is plausible that a table injury claim would have been successful. Instead her family were persuaded that Michelle was a poster child for the vaccines-cause-autism hypothesis and now they are left with nothing.

The Process

Michelle Cedillo’s claim was first lodged in December 1998.

During the first two years after the filing of the petition, petitioners’ counsel were primarily engaged in the tasks of (1) assembling and filing the voluminous medical records pertaining to Michelle’s illness, and (2) searching for one or more expert witnesses who could opine that Michelle’s illness was vaccine-caused. On October 31, 2000, the petitioners filed the expert report of Dr. Cindy Schneider, and on May 8, 2001, they filed the expert report of Dr. Marcel Kinsbourne, both reports contending that Michelle suffered a “Table Injury.” Respondent then filed an opposing expert report, of Dr. Max Wiznitzer, on July 11, 2001. (Cedillo 2009, page 17)

Then, in 2002 the table injury petition was altered to one of causation-in-fact and the Cedillo case joined the Omnibus Autism Proceedings (OAP). The OAP were meant to speed up the process as first hundreds and then thousands of parents lodged their petitions claiming that vaccine caused their child’s autism. Under the arrangements agreed by all parties the Petitioner Steering Committee (PSC) would gather the evidence for a general causation theory which would be presented at a hearing in 2004.

So why did it take until 2007 for the first test case to be heard and 2009 before a judgement was reached? One might be forgiven for thinking that the respondent for the government, the Dept of Health and Human Services (HHS), had been dragging its heels.

In fact it was the PSC that constantly returned to the court seeking more delays. They did not have a viable case in 2002. But they did believe that the government and the drug companies were conspiring to hide the evidence. By the end of 2006 they had requested and received 214,000 pages of documents from government files.

A lot of the science that they were to rely on in court did not exist in 2002. To take an example, the evidence for thiomersal damaging the immune system relied upon research by Goth et al (2006) and (Agrawal et al (2007). The evidence for a “mercury reflux disorder” or the theory that some children were poor excretors of mercury depended inter alia on research by Holmes et al.(2003), Bradstreet et al. (2003) and Adams and Romdalvik (2007).

Regarding their central idea, that vaccine strain measles could enter the brain and cause autism, Special Master Hastings expressed surprise that the PSC offered so little evidence. Two of their expert witnesses, Hepner and Krigsman, were involved in a study of measles virus persisting in the gut of autistic children but it has yet to be published.

So many of the delays are down to the PSC seeking to buy time while they looked for evidence that might bolster their claim. Finally they proposed a change to the OAP. Instead of a general causation hearing they wanted to present three general causation theories:  thiomersal/MMR together, thiomersal acting along, MMR acting alone and they wanted to introduce a test case - Michelle Cedillo. This is in contrast to the process Special Master Hastings describes in relation to the aforementioned Rubella/arthritis hearing over which he presided.

For example, I myself presided over an “omnibus proceeding” concerning the “general causation” issue of whether the rubella vaccine can cause chronic arthropathy. I met with counsel representing petitioners whose cases involved that “general causation” issue, and respondent’s counsel. Those counsel developed evidence concerning the general causation issue, filed expert reports and medical literature, and then presented oral testimony from the experts at an evidentiary hearing. Based upon that evidence, I filed a published opinion concluding that the rubella vaccine can cause chronic arthropathy under certain circumstances, if a case meets certain criteria. In re Ahern, No. 90- 1435V, 1993 WL 179430 (Fed. Cl. Spec. Mstr. Jan. 11, 1993). Based on that opinion, most of the pending or later-filed cases involving that general causation issue then resolved without the need for an individual, case-specific trial. For example, in 70 such cases the parties reached a settlement affording compensation to the petitioner, based upon the similarity of those petitioners’ situations to the criteria outlined in the Ahern opinion. In 52 other cases, the petitioner either voluntarily dismissed the petition or abandoned prosecution, apparently in light of the fact that the petitioner’s case did not fit within the stated criteria. In only 31 cases was I required to make a formal ruling concerning whether the petitioner was entitled to an award, and even those cases involved either no trial or a limited trial, because the “general causation” evidence from the omnibus proceeding was available for application to those individual cases. (Ten of those 31 cases were resolved in favor of a petitioner,(Cedillo 2009, page 16)

I suspect that the PSC, realizing the weakness of their position and running out of reasons to delay even further, wanted a test case around Michelle Cedillo because they hoped that her obvious physical ill health would persuade the special master that she deserved an award for her injuries and the merits of her case would ease the passage of the general causation hypothesis.

It was not to be. Special Master Hastings was quite clear that the primary purpose of the hearing was to adjudicate the evidence for general causation.  Only then would he apply the evidence to the particulars of the Cedillo case. By opting for a test case the PSC undertook first to prove that MMR could cause autism and then, and only then, could they argue that in this particular case MMR did cause autism. The office of the special masters (OSM) agreed to the test case procedure but asked for three test cases for each causation theory. You have to read the docket for the OAP to appreciate just how hard this was for the PSC. They really struggled to find enough parents who would come forward as test cases.

You would think that after five years of activity and around 5000 families signed up for the OAP they would have no problem identifying test cases. But they kept missing deadlines. As late as April 2007 they still had not found a second test case for the thiomersal/MMR theory even though the first test case was due to start in June. When they did find a family like the Polings who were willing to step up to the mark for the thiomersal causation theory, it turned out that their case was so atypical that they were able to settle with HHS without going to court. Then the family chosen to replace them dropped out as well.

In following this for so long I got an impression of the PSC as something that talked a good fight but backed down every time it was challenged. Then it finally had to take its case to court and it very soon became apparent that the PSC had no case at all.

The year long delay between the hearings and the judgement tempted some to speculate that it was a very close decision. The Poling decision was erroneously regarded as de facto recognition by HHS that vaccines cause autism.  But Special Master Hastings offers a more realistic reason.

Finally, I note that much time has passed since the conclusion of the evidentiary hearing in this case in June of 2007. However, two major factors should be recognized.

First, the completion of the three-week evidentiary hearing in this Cedillo case in June of 2007 did not mark the end of the presentations by the parties relevant to this case. Additional “general causation” expert testimony, much of it relevant to this Cedillo case, was presented during the evidentiary hearings in the Hazlehurst and Snyder cases in the fall of 2007, with the Snyder hearing not concluding until November 9, 2007. Then, the parties’ process of briefing this Cedillo case extended into May of 2008. Finally, even at that point the petitioners in this case were still keeping alive their option to submit additional “general causation” evidence that they hoped to obtain from a British litigation file. It was not until July of 2008 that the Petitioners’ Steering Committee in the OAP concluded that they would not attempt to obtain further evidence from that British litigation. (See discussion at p. 83 below.) Thus, it was only at that time that I could, as I did on July 30, 2008, file an Order declaring that the evidentiary record in this case was closed.
Second, it should be recognized that the evidentiary record, based upon which I have decided this case, is massive. This record dwarfs, by far, any evidentiary record in any prior Program case. A few statistics may give a flavor of the amount of material involved. The record contains about 7,700 pages of Michelle Cedillo’s medical records alone. The parties filed a total of 23 expert reports in this Cedillo case alone, and a total of 50 expert reports including the Hazlehurst and Snyder cases. During the evidentiary hearings, 16 expert witnesses testified in Cedillo, four in Hazlehurst, and eight in Snyder. The hearing transcripts totaled 2,917 pages in Cedillo, 1,049 pages in Snyder, and 570 pages in Hazlehurst. The parties filed six post-hearing briefs in this Cedillo case alone, totaling 462 pages.

In addition, the amount of medical literature filed into the records of the three cases was staggering. In the Cedillo case alone, the parties filed a total of 658 medical journal articles, medical textbook excerpts, or other items of medical literature. Many more such documents were filed into the Hazlehurst and Snyder cases, so that a total of 939 different items of medical literature were filed into the three case files (even after excluding from the count those documents that were filed in more than one case). Some of those items were extremely lengthy. (E.g., Ex. JJ, 163 pages; Ex. L, Att. 1, 617 pages; Ex. BB, Att. 94, 306 pages.) I have not attempted to calculate the total number of pages of those 939 documents, but clearly the total runs well into the tens of thousands of pages. And most of those documents are densely packed with difficult, technical information, so that studying even a medical journal article that is only a few pages long can require a lengthy time period.
Further, the complexity of the material involved here is daunting as well. The medical records, expert testimony, and medical literature involve many different subspecialties of biology and medicine, including neurology, gastroenterology, virology, immunology, molecular biology, toxicology, genetics, and epidemiology.

In sum, the massive nature of the evidentiary record, along with the complexity and variety of the scientific issues involved, necessitated the lengthy time period spent in preparing this Decision. (Cedillo 2009, pages 18-19)

To my mind the situation prior to the decision was this.

• A speculative claim for vaccine damage as a cause of autism was entered with the court.
• Petitioners were given lots of time in order to substantiate their claims.
• Petitioners were allowed to determine the format of the hearings.
• Petitioners were given every assistance by the court in order to assemble their evidence.
• Petitioners were given every assistance in discoverng potentially damning material held by the government.
• The initial test case was presided over by a special master who had previously ruled in favour of general causation for a vaccine injury in an omnibus hearing concerning the rubella vaccine. He subsequently decided in favour of the majority of cases in that omnibus proceeding.
• The Special Master examined every possible reason for finding in favour of the PSC.

And still they lost. The hypothesis was found wanting.

The Hypothesis

Michelle Cedillo became the first of three test cases for the hypothesis that the mercury in a vaccine preservative called thiomersal [thimerosal in the USA] weakened the immune system in susceptible children and subsequently enabled live measles virus from the MMR vaccine to persist in the body, particularly in the gut where it caused gastrointestinal dysfunction, and in the brain, where it caused autism. Although Special Master Hastings dealt at length with the argument that thiomersal weakened the immune system he was also clear that this was essentially a sideshow.

I find the first part of the petitioners’ theory of this case–i.e., their contention that thimerosal-containing vaccines damaged Michelle’s immune system, thereby making it possible for the vaccine-strain measles virus to persist within Michelle’s body–to be essentially unnecessary to the rest of their causation argument. That is, if petitioners were able to persuade me that the vaccine-strain measles virus did likely persist in Michelle’s body and cause damage to either (or both) her brain or gut, I would compensate such damage. It would not matter why the measles vaccine-strain virus was able to persist; whether that persistence was the result of thimerosal-containing vaccines or for some other reason would be irrelevant. (Cedillo 2009, page 21)

The PSC have announced that they will no longer be presenting a third set of cases to test the hypothesis that MMR alone causes autism as they feel that the evidence presented in the three test cases for the thiomersal/MMR hypothesis made the case sufficiently for MMR alone as a cause of autism. In effect they are agreeing with Special Master Hastings that the evidence on thiomersal that they presented in the Cedillo case was unnecessary and irrelevant. This did not stop Special Master Hastings from carefully considering the evidence for thiomersal harming the immune system before rejecting it in its entirety. All the arguments are set out in Cedillo 2009, pages 22 - 40.

The single biggest problem with attempting to connect thiomersal with MMR is this. If Michelle Cedillo had a compromised immune system as a result of vaccine damage in the first months of life why did it not show itself at the time? She did not have adverse reactions to her early vaccinations. In fact tests show that her immune system responded appropriately to the vaccines, creating antibodies and strengthening her immune system. Her medical records show no signs of an abnormal immune system in the first year of life. When the petitioner’s expert witness, Dr Byers, attempted to use test results that showed abnormalities the respondent’s witness, Dr McCusker pointed to a fundamental error. Dr Byers was comparing Michelle’s results to values for adults. If you compared them to age adjusted values for children the results were normal. Even using adult values Michelle only deviated slightly.

Dr. Gupta himself, after doing the 1997 testing in question, described Michelle as having “almost normal immune functions.” (Cedillo 2009 page 38)

Confusion

rather than Conclusion seems to sum up proceedings thus far. At three years old, after receiving all her vaccines and being diagnosed with autism, Michelle Cedillo had a normal immune system. She had other health problems and a year later her parents entered a petition for a table injury with the vaccine court. Three years later in 2001 an expert report was entered in support of the petition by Dr Marcel Kinsbourne.

Then, somehow by 2002, Michelle’s parents had been persuaded that she did have an abnormal immune system. Moreover she had had it for most of her life as a result of receiving thiomersal containing vaccines. Her dysfunctioning immune system had allowed the measles component of her MMR jab to persist in her body and enter her brain, causing her autism. The table injury was replaced by a causation-in-fact claim. And when it finally came to court in 2007 it seems that Dr Marcel Kinsbourne had been similarly persuaded because he was the main witness for the contention that MMR had caused Michelle’s autism.

The most bizarre revelation in the record so far (Cedillo 2009 page 42) is that the Cedillos decided to alter their claim two weeks before their doctor took a biopsy from Michelle and two months before they got the results back confirming (erroneously as it turned out) that measles virus had persisted in Michelle’s gut. Someone was very persuasive indeed.

But, in the absence of hard evidence, they could not persuade the special masters. In my next post on the Omnibus I will look more closely at the standard of evidence in support of the MMR hypothesis and  role of Dr Krigsman

February 22nd, 2009 Posted by Mike | MMR, autism Omnibus, science, vaccines | 18 comments

Stoller has no idea for Change

Change.org is canvassing for ideas to

be presented to the Obama Administration on Inauguration Day, January 20, 2009 as the “Top 10 Ideas for America.” We will then launch a national campaign behind each idea and mobilize the collective energy of the millions of members of Change.org, MySpace, and partner organizations to ensure that each winning idea gets the full consideration of the Obama Administration and Members of Congress.

At present there are nearly 4000 ideas organized in different categories. You log in to vote and the top three ideas in each category go into a final ballot. One of the categories is Health Care. The most popular ideas in health care are for free or affordable health care, an end to non-medical circumcision and legalizing marijuana, particularly for therapeutic use. Until recently there was an idea related to autism in 4th place.

The author was Ken Stoller,

an anti vaccine activist who offers unproven, alternative therapies for autism like hyperbaric oxygen therapy. So it is no surprise that in his proposal he claims

a positive association between  environmental factors, such as mercury and pesticide  exposure, and neuroimmune illnesses, most notably autism.

No evidence is offered for this positive association, nor for his claim that autism is a neuroimmune illness.  He also seems to think that “pernicious chemicals” found in vaccines are to blame for a lot more than autism.

Many illnesses,  including breast cancer, prostate cancer, Parkinson’s disease,  and Alzheimer’s have their origins in the rising levels of  pernicious chemicals we come in contact with including, but  not limited to, the contents of vaccines.

As the piece progresses it is clear that Stoller is targeting pesticides rather than vaccines. He even cites Rachel Carson’s Silent Spring, in preference to the usual anti vaccine screeds from Kirby, McCarthy etc. Stoller talks about unspecified neurotoxins and carcinogens which he claims are to be found in pesticides and herbicides commonly used in the USA before going on to cite some alarming statistics about childhood illnesses.

Today, almost 1 out of 3  American children suffer from at least one chronic illness, and  12 million have some form of developmental disorder. The  U.S. has the 4th highest incidence of childhood cancer in the  world. Since the 1970’s, there has been a 50% increase in  childhood acute lymphocytic leukemia and a 35% increase in  brain cancer.

Almost 1 in 3 American children are permanently sick? Not exactly. According to this news report

more than 7 percent of U.S. children and youth were hampered in their daily activities by an illness that lasted three months or longer in 2004, compared to just 1.8 percent of children in 1960.

It goes on to list the three most common chronic conditions in childhood: obesity (18%), asthma (9%) and ADHD (5%). Add them all together and yes, 32% is almost 1 in 3. But the most common causes cited are not exposure to toxins but poor diet, lack of exercise and spending too much time indoors, which increases exposure to the dust mites and cockroaches that trigger asthma.

Childhood cancer is another matter and Stoller’s figures do look alarming. But the background information at the National Cancer Institute makes Stoller’s interpretation seem unnecessarily alarmist rather than alarming.

Long-term trends in incidence for leukemias and brain tumors, the most common childhood cancers, show patterns that are somewhat different from the others. Incidence of childhood leukemias appeared to rise in the early 1980s, with rates increasing from 3.3 cases per 100,000 in 1975 to 4.6 cases per 100,000 in 1985. Rates in the succeeding years have shown no consistent upward or downward trend and have ranged from 3.7 to 4.9 cases per 100,000 (2).

For childhood brain tumors, the overall incidence rose from 1975 through 2004, from
2.3 to 3.2 cases per 100,000 (2), with the greatest increase occurring from l983 through l986. An article in the September 2, 1998, issue of the Journal of the National Cancer Institute suggests that the rise in incidence from 1983 through 1986 may not have represented a true increase in the number of cases, but may have reflected new forms of imaging equipment (magnetic resonance imaging or MRI) that enabled visualization of brain tumors that could not be easily visualized with older equipment (3). Other important developments during this time period included the changing classification of brain tumors, which resulted in tumors previously designated as “benign” being reclassified as “malignant,” and improvements in neurosurgical techniques for biopsying brain tumors. Regardless of the explanation for the increase in incidence that occurred from 1983 to 1986, childhood brain tumor incidence has been essentially stable since the mid-1980s.

According to Stoller the cause of all this is the trillions of pounds of pollutants  that are being poured into the environment. The government has failed to act because

the governance of medicine and  science has been overly affected by corrupt corporate influences void of humanitarian concerns and focused solely  on financial gain.

So there we have it. Totally unrelated disorders and conditions are lumped together and blamed on a vague assemblage of pernicious chemicals. Statistics are abused to make the situation seem more scary than it is. Big government and big business are conspiring to cover up the damage they are causing to the nation’s health … again!

There was an idea

related to autism. It is no longer there. Stoller withdrew it when it became clear that it was not going to make the cut. Despite appeals on all the anti vaccine/autism lists for people to vote for it Stoller had only gained round 400 votes and was slipping down the list. Stoller gave another reason for withdrawing. As he was not going to win what was the point of leaving it up? It was only providing a platform for Neurodiversity to attack him in the comments section. Actually one man, Ken Reibel was asking awkward questions and pointing to errors of fact in Stoller’s replies

Ideas for Change

is a great idea itself. Some of the more interesting proposals are generating a lot of serious discussion as well as votes. But Stoller is not interested in discussion. His is not an idea for change. It is the same old anti-vaccine nonsense tagged onto a lot more unsubstantiated claims about environmental pollution backed up by the misleading use of statistics.

This is unfortunate. There is no doubt that environmental pollution is having an impact on the planet that goes way beyond human health. But we need scientists to investigate specific causes for concern and find out what is really happening. When scientists do investigate the hypothesis that there is a link between pesticides and  childhood cancers they often get contradictory results. A review of the literature concluded that

The available literature does not allow firm conclusions with regard to pesticides and any type of childhood cancer. Investing in the acquisition and critical review of exposure information appears to be the crucial step for causal assessment in future research. However, focusing on the presence of pesticides, and not asking the question why they were used, might mask relevant associations to other causative agents.

So, even if we were to demonstrate a consistent association between pesticides and cancer it could well be that the cockroaches or whatever it is we are killing, are themselves the cause. Following Stoller’s lead and imposing a moratorium on organochlorine pesticides would be one heck of a way to find out.

December 22nd, 2008 Posted by Mike | Quackery, government, science | one comment

National Autistic Society International Conference - impressions

Last month I attended the International Autism Conference organized by the National Autistic Society. Unfortunately I had to leave early in order to get home before scheduled engineering work severely curtailed my rail journey home. So I had to leave part way through Stephen Shore’s presentation and miss the presentations from Rita Jordan and Simon Baron-Cohen.

My primary reason for attending the conference was to deliver a poster presentation advertising the Autism Hub. This was hardly onerous, though not without controversy. See the discussion on my previous post for details. I had to arrive early on the Friday morning and put the poster up in the designated area. Thereafter it was my job to be available during breaks when people visited the poster area and to give out calling cards for the Autism Hub. I wore my Hub T-shirt throughout and had some interesting conversations, mainly with people who were curious about what blogging was. For those of us who blog or otherwise use the web to interact on a regular basis it is easy to forget that for many people the internet is something they visit for information or entertainment. Participation in online communities is not central to many people’s involvement with autism.

This will probably change. When it does, it may be that social networking sites like Face Book are more important than blogging and we bloggers will become oddities, like previous participants in Usenet and bulletin boards. Of course Face Book may have become completely passé by then and overtaken by some new development. For all I know it has happened already and nobody told me!

Back to the Conference

The first International Conference, three years ago, began with a marvellous introduction from Lorna Wing. This year we were treated to an equally inspiring opening. Only this time it was a drama presentation, on film and live on stage, by autistic students from the Sybil Elgar School in London. They were superb! I hope the video is posted on YouTube.

In contrast, the opening presentation from Sir Michael Rutter was serious and low key. Rutter has been involved in autism research almost from the outset. He is uniquely placed to give us an overview of what we know and what we still need to learn about autism. The answers to these two questions were at the heart of his presentation. The result was an authoritative review of the current state of scientific knowledge and of the limitations of that knowledge. Rutter made a very interesting point in relation to ABA – Applied Behavioural Analysis. He regards its efficacy to be non-proven mainly because in all the studies to date nobody has controlled for two key variables. Is it the earliness, the timing of the intervention that is crucial or is it the intensity? Interestingly, he did not comment on the most important variable, the content of the intervention. Perhaps any dream will do?

Rutter is old school. He clearly subscribes to the deficit model of autism as a condition defined by its impairments. At one point he remarked on the fact that of all the mental disorders, Tourettes, Schizophrenia, OCD, ADHD, etc., autism was unique, in that it was the only one that did not respond to neuroleptic drugs. My immediate thought, which I later found was shared by some others in the hall, was that if autism was so unique amongst all the mental disorders in its resistance to drug treatments, perhaps it was not a mental disorder after all.

The conference styled itself as “Research into Practice.” I was looking forward to contributions that brought us leading edge research that would either challenge Rutter’s position or at least take up the unanswered questions he posed to conference. Unfortunately the “big draw,” Professor VS Ramachandran with his theory of mirror neurons had cancelled and a re-jigged agenda, while retaining interest, was a trifle ordinary by comparison. By lunchtime on the second day I had enjoyed a good conference but felt that there was very little new that I could not have found elsewhere, either online or by reading the literature. Perhaps, if the rail schedule had permitted, I would have been suitably “wowed” by Rita Jordan and Simon Baron-Cohen. Never mind. There were compensations.

One highlight was a panel discussion of media presentations of autism. It was chaired by NAS president and actress Jane Asher, who famously appeared in an episode of Holby City which featured a storyline about her character’s involvement with a young man with Aspergers Syndrome. The panellists were Alex Thomson - Chief Correspondent of Channel 4 News and parent to an autistic child; Dr Stuart Murray - Leeds University and author of Representing Autism; Diana Kyle - Holby City series producer; documentary film-maker Saskia Baron, whose brother is autistic; Angela Pell - screenwriter of the film Snowcake; Henry Normal – married to Amanda Pell, writer and TV producer (he and Amanda have an autistic son); and Ros Blackburn who is autistic and worked closely with Sigourney Weaver when filming Snowcake.

Some interesting themes emerged.

Like many of us, Alex has been ill-served by the system with respect to his child. He wanted the National Autistic Society to be more forthcoming and provide leadership that could shape the media agenda on autism, rather than respond to it. The news agenda is not necessarily one that best serves the interests of the autism community. Take the MMR hoax, which began with a rogue scientist but was only sustained by persistent media attention. Alex’s partner has recently produced a report on Ben Haslam that I blogged about. This is an example of the real autism stories that need telling in the media.

Stuart made the point that while we might hope and expect documentaries and news reports to provide a more accurate representation of autism, fiction has a much higher impact. Discussion centred on the use of autism as a prop. Diana made the point that the story has to come first and the autistic character has to emerge from the plot and not just be a cypher or a McGuffin in Hitchcock’s famous turn of phrase. Diana also informed us that with Holby City, a hospital drama, there was a three month lead in to every episode in which patient advocacy groups were consulted to ensure accurate and respectful portrayal of the medical condition that featured in the episode.

Angela stressed that the autistic character in Snowcake did not change. The audience still identified with her. They were challenged and they had to change. Instead of “make me normal” we had “make you more accepting.”

Saskia spoke of television being an unsubtle medium. It tends to go for the obvious, the dramatic. Hence quiet stories of everyday life, something she strives for in her work, are hard to capture and portray.

During the discussion autistic adults spoke up about the importance of being valued and not being constantly portrayed as “damaged goods” by the media. But while autistic people deserve acceptance and understanding, that does not mean that they do not experience real problems as a result of their autism alongside those problems that arise from other people’s ignorance. Ros spoke eloquently about the problems that autism cause for her and her fervent wish that research could provide her with some relief from these.

There was a lot more. But overall I got the impression that it is possible to get accurate and effective portrayals of autism into the media and on to prime time television provided we do our homework, take time to understand their agenda and give them a story they can tell with confidence.

The Triad of Perspectives

Olga Bogdashina was a marvellous plenary speaker. Like many professionals her introduction to the world of autism came via her own children. She shared with us the terrible judgement that she received from a consultant, that her son was a hopeless case and it would be better if he had died. “Better for whom; me, him or you?” was her splendid reply. Suffice to say that mother and child are doing well and so is his autistic sibling.

She criticised the triad of impairments as too one-sided. Why are all the impairments on the autistic side? What if it is a triad of differences? Difference may make communication hard work. But maybe the reason is that we lack a Theory of the Autistic Mind. She spoke at length about the Triad of Perspectives, how parents, professionals and autistic people all view autism differently and we all have our own impairments. I really warmed to her descriptions of the active but odd professional (I’ve been to a conference so now I’m an expert) and the passive parent. (Tell me what to do, not why)

She also gave an excellent workshop on communication. Autistic people do not communicate in a defective way that needs correcting. They communicate in ways concordant with their perceptual and cognitive experience of the world. Instead of trying to “fix” them and teach compliance to our mode of communication, we should learn to understand their experience and look for ways to translate between the two modes. Rather than insist on them using our mode all the time, perhaps we should demonstrate our legendary theory of mind and try and communicate on their terms.

I received a practical illustration of this when I struggled with the presentation on Oxytocin by Professor Evdokia Anagnostou. I found her slides difficult to read and her accent difficult to understand. And she spoke very quickly about a complex subject, making no concessions to this particular listener’s lack of knowledge.

I had a similar experience with Larry Arnold’s workshop on the progress of his PhD thesis: “Video as an educational tool in Autism, an under researched topic.” In this case, although I had no problems following his arguments, I did challenge him later on the complexity of the ideas in his presentation. Larry made the telling point that this was an international conference. He was not explaining his ideas to the uninitiated. He was opening up his research to critical commentary by his peers.

Challenges Faced by Families

Olga’s presentations chimed well with the family workshop featuring Virginia Bovell, John Dickinson, Josh Muggleton, and Steve McGuinness. There was no sugar coating of the difficulties that autism can bring but they still managed to strike a positive note.

Virginia is the mother of a severely affected child who attends a specialist school based on the principles of ABA. She spoke honestly about the pressures that autism places upon the whole family, a theme reiterated by her fellow speakers. She also discussed the symptoms that are sometimes disregarded by clinicians as behavioural manifestations of autism rather than being diagnostic of additional medical conditions and paid tribute to the doctors at the Royal Free in London who saw past her son’s autism to treat his gastro-intestinal disorder and continue to make his appointments as stress free and autism friendly as possible. It is good to know that the notoriety that Andrew Wakefield attracted during his time there has not caused lasting harm to this proud institution.

John was particularly poignant in his account of raising his high functioning daughter in an era before high functioning autism and Asperger Syndrome were recognized. In his daughter’s case diagnosis came in early adulthood. My own son was not diagnosed until he was 12 and I well understand the regret at missed opportunities to ease a child’s path through autism. As an aging parent I also share John’s concerns for the future after his death and how this affects not just his daughter but also her neurotypical siblings.

Josh, who has Asperger Syndrome, was also concerned that the needs of siblings should not be neglected. He knew that autism made life difficult for those around him. He also knew that other people’s attitudes to autism were also a problem. He was bullied “because” he was autistic. Or was he? When siblings and parents are bullied (again, I speak from experience) are we bullied because of autism or because there is something wrong with the bullies? It need not be overt bullying. Social isolation affects the whole family.

Steve, who is autistic and the parent of an autistic child, suggested that people with autism are more tolerant of non-autistic people than we are of them. Barriers to inclusion are erected by non-autistic people who lack knowledge and understanding of autism. Autistic people spend their whole lives trying to understand and adapt to societal norms. When they succeed they are given little credit. But when they stumble they are condemned. The media is quick to promote negative images of autism, whether it is the imputed financial burden on the state or the invocation of autism as the reason whenever an autistic person commits a crime. Neurotypicality is never invoked as an explanation of criminal behaviour, even though most criminals are neurotypical and not autistic.

Virginia told me that all of them wanted to stress that it was as much society’s response to autism, as the autism itself, that people should be looking at when thinking about pressures and challenges.  Too often people hone in on the ‘disorder’ without looking at how much easier life could be if society was more understanding and generous towards autistic people and there families. That hour probably said more about the needs of autistic people and their families than any other session at the conference. Next time the organizers should make it a plenary session and not a workshop so everyone can benefit from it.

Research into Practice

So, a good conference, but it could have been better. I noticed the numbers were down, six hundred compared to a thousand at the previous conference. That suited me. It was more manageable and less overwhelming. But we also had the IMFAR conference in London earlier this year which may have stolen some of the thunder from the NAS.

My impression was that the question of how autistic people perceive and understand the world was fairly central to the whole event. All the workshops and plenaries that directly involved autistic people, the presentations by Olga Bogdashina and the workshop by Michael McCreadie of Daldorch House School on “Sensory issues in autism,” they all presumed that the autistic perception of the world was as valid as the non-autistic perception of autism. If “Research into Practice” is to become more than a conference title, then autism researchers will have to go beyond the view of autism as deviant behaviour based on defective neurology. They need to consult with autistic people about their priorities and their perceptions in order to inform research priorities in the future.

October 7th, 2008 Posted by Mike | National Autistic Society, Neurodiversity, research, science | 6 comments

An Alliance for Autism

I am still curious as to whom Mady Hornig and Ian Lipkin consulted in the “autism parent/advocacy community” before carrying out their recent study that found no association between  the MMR vaccine and Autism and no association between the MMR vaccine and GI disorders. So I wrote to the press officer.

Your press release entitled “Study Firmly Shows No Connection Between Measles, Mumps, Rubella (MMR) Vaccine And Autism” quotes Professor Lipkin as saying,

“The study design process was a critical piece for us, as there is still so much public concern over the safety of the MMR vaccine. For this reason, we involved the autism parent/advocacy community as we designed the study to ensure that all issues were being addressed. We are hopeful that this process of community engagement will build important partnerships among members of the autism community, physicians, public health agencies, and clinical researchers; serve as a paradigm for the conduct of future studies to understand the causes of this disorder; and facilitate the rapid communication of clinically relevant scientific findings to the broader community.”

I note that many of the parent advocacy groups like NAA and Safe Minds are openly critical of the paper and wonder which advocacy groups did you consult? I am a  member of the Autism Hub, a community of bloggers that broadly welcomes the results of this study. We include parent advocates, professionals and autistic people. We support evidence based medicine and uphold the values of scientific enquiry. We oppose the pseudoscience and quackery that infests many of the parent advocacy groups. There is no compelling evidence for an autism epidemic, vaccine induced or otherwise. There is no evidence for the efficacy of the biomedical “cures” being touted to parents groups.
 
We are trying to get the research community to understand that these people - TACA, NAA, Generation Rescue, Safe Minds etc. do not represent the views of most parents. Celebrity endorsement from people like Jenny McCarthy has helped to give them a disproportionate presence in the media that belies their actual importance. To this end some of our members recently took part in a panel discussion at the University of San Diego and I am presenting a poster on our activities at the upcoming International Conference in London organized by the National Autistic Society. We would welcome a dialogue with the research community that helps to place the needs expressed by autistic people and their supporters at the heart of the research agenda.

The Autism Hub is not really an organization. We are more like the expression of an idea. I suspect that our greatest strength, our diversity, is also potentially our greatest stumbling block when it comes to building an organization. But there is a need for organizations that embody the principles of the Autism Hub, if only to give the lie to the claims of the anti-vaccine parents that they represent the autism community. They are invited to sit on the Interagency Autism Coordinating Committee. They are consulted about the the design of academic studies. They have ready access to the media. This is not because they are popular. They do not enjoy mass support. After all no more than 2000 people attended their Green Our Vaccines Rally in Washington. The latest figures confirm that less than one per cent of US children are unvaccinated. But they are organized. 

I know that there is a tradition of self organization within autism. The Autistic Self Advocacy Network and Autism Network International are prime examples. The only drawback with such organizations is that it is hard for them to organize children. And while I may be convinced that the best advocates for autistic children are autistic adults our present culture does privilege parents in this respect.

The anti-vaccine parents are vocal and committed. They have no qualms about claiming to represent the autism community. But autism hub  parents are constrained from challenging them because we would feel uneasy about claiming to represent “our children” if it meant disenfranchising all the autistic adults who would much rather speak for themselves, thank you very much.

The answer is to build an organization of parents and autistics. It may not be easy. Parents and adults do have differing agendas. Potential sources of disagreement include questions like:

• Is autism a disability or a difference? Can it be both?
• Is our agenda the same for all autistics regardless of their potential for independent living?
• Autistic adults need accommodations more than interventions. But is the same true for children?

I think  we need an Alliance for Autism that reflects our diversity. It would work like this.

1. We should not try to resolve all our differences in advance and create a perfect organization with no internal conflicts.
   • Otherwise we would be forever involved in meetings about meetings and looking deep into theoretical discussions. Meanwhile nothing happens. 
2. We should not ignore our differences and pretend we are all united by tacitly sweeping all our differences under the carpet.
   • This would just lead to us adopting meaningless forms of words that tried to paper over the cracks in our campaign. I am sure that McCain and Obama will provide us with plenty of examples of this in the months ahead!
3. We should be able to acknowledge our differences and agree to disagree on any number of issues providing we can come together on those issues that do unite us.
   • As an old time socialist my favourite analogy is the picket line.  There can be all sorts of debates and disagreements expressed until the strike breakers make an appearance. Then you suspend your debate and link arms to see off the threat.

I would like to see an organization develop along these lines to counter the influence of “the usual suspects” in Safe Minds, NAA et al. and get our voices heard in the media and at the conference table. How about it?

POSTSCRIPT

Prior to posting this I consulted with friends in the autism community. They raised some important concerns which I hope I have accurately summarized thus and I append my responses thus. (NB I a not reprinting email exchanges on my blog. I am reporting on what I took away from these discussions and how they have influenced my thinking.) 

Do we really need another parent founded, parent led organization. Shouldn’t we be allying with and empowering existing organizations like the Autistic Self Advocacy Network which are founded and led by autistic persons?

The reason why I am proposing the alliance, as opposed to developing an existing organization like ASAN goes back to my experience as an anti-racist activist in the 1970s when we were concerned about the growth of the far right in the UK.There were anti-racist  and anti fascist groups out there but none of us had mass appeal and just bringing us together was difficult because of all the ideological baggage different groups brought to the table.

The solution was the Anti Nazi League. We came together around a single aim - to expose the far right as the Hitler loving nazis they really were. We did not ditch our ideological differences. We did agree that they were not relevant at that moment in time to the specific task of the ANL. The result was a broadbased movement that went far beyond the collective reach and appeal of the original activists who set it up.

Translating that to today and building an alliance for autism I would want it to be able to attract and speak for parents who want evidence based therapies for their children and may even believe they want a cure but are horrified at the anti-science, anti-vaccine stance of McJenny & Coy. and the untested “cures” they inflict upon their children.

Such an alliance need not be parent led but I think it needs to be parent focused. Existing advocacy organizations like ASAN may well prove to be the organizational force behind the alliance. But the aim would be to bring parents on board in a form that governments can recognize and incorporate in structures like IACC at the expense of the existing “autism parent/advocacy community” who are hogging the limelight right now.

An anti anti-vacine organization may be necessary but it is not the same as an Alliance for Autism. A real alliance for autism is defined by what it supports, not by what it opposes.

I agree. To continue with my analogy from my days in the ANL, we were fortunate that a parallel organization - Rock Against Racism - arose at around the same time. They emphasized the black origins of most popular music and organized concerts and music festivals under the positive banner of “Love Music Hate Racism.”  Both organizations enjoyed a symbiotic relationship for a crucial time when they supported each other and both were strengthened.

Translating this experience to the autism community I suggest that we build the bits we need and then see how they fit together. Some people will be building the ”anti” bits. Others will be building the positive bits. and we will find an accommodation with each other.

The vaccine issue is a blip of no lasting importance. The real battle will centre upon the myth of “normalization” to make autistic people “indistinguishable from their peers” and the potential for eugenic “solutions” to autism implicit in the current search for genetic markers for autism.

Again, I agree. But right now this”blip” looms large on the horizon and children are suffering as a direct consequence. We have to take it out. In doing so our natural allies are in the scientific community. I agree that long term, the really important argument will be between us and the scientific community about concepts of disease, disorder and the social model of disability. That is one reason why I have sought and gained appointment to the lay consultative panel of the Human Genetics Commission which exercises ethical oversight of the general trends in genetic research in the UK.

We should be positive about autism. Parents are excited by the ideas of neurodiversity. But such an alliance has to be led by autistics.

Yes, absolutely! But we have to acknowledge that most parents do not begin by feeling positive about autism and  excited by neurodiversity. Most parents begin by being wide open to anyone who promises a cure.

And those parents who do learn to accept autism and make the best of it do not see themselves primarily as supporters of self advocacy for autistic individuals. They see themselves as central to advocating for their children and look, in the first instance, for allies amongst similar parents. They take a long time to realise that their children are going to become adults with autism. I use that form of words deliberately instead of autistic adults because I see this phenomenon with parents of all sorts of children, autistic and otherwise at my school. The key point is that, more than most parents, the parents of any child with a disability are inclined to see their child as first and foremost a child, and resist the idea that they will be an adult one day. Once they accept the inevitablity of their offspring leaving the nest they become more open to ideas about self advocacy and human rights issues for disabled adults.
 
In other words parents do not automatically see themselves as being on the same side as autistic adults. They are totally committed on the side of their children. If we suggest that they sign up as parent auxiliaries in support of a generic autistic rights movement  this will strike them as patronizing. I think that mutuality rather than auxiliarity (is that a word?) best captures my understanding of the way forward.
 
The bottom line is that parents have legally enforcable rights and responsibilities in relation to their children. The fact that some parents abuse their rights and ignore their responsibilities should not detract from my basic premise that parents are de facto the primary advocates for their children. Hence we need an alliance in which neither parents nor autistic adults are subordinate or auxiliary to each other.

This is where I am at the moment. It could be that I am wrong. But I think a public debate about where we go from here is the best way forward. I know that clown blogs and hate blogs will mock us.But what else is new? We are a vast community and they are a pimple on the arsehole of humanity. It is time for us to set our own agenda and use our best endeavours to make it so.

September 10th, 2008 Posted by Mike | Autism rights, Neurodiversity, autism acceptance, autism advocacy, autism parents, disability rights, parents, science | 29 comments