Action For Autism

Hub Bloggers at the International Autism Conference in London

Well, I am off to London tomorrow to the International Autism Conference. As well as meeting up with old friends and listening to some of the leading edge contributors to our knowledge about autism I shall also be making a modest contribution to the proceedings when I present a poster entitled The Autism Hub: how blogs can help inform research priorities. This is what it says.

Introduction

The internet is widely used by members of the autism community as a source of information, guidance and support. Different experiences of autism have led to the formation of online communities that often have opposing views.

A recent study (1) that predates the formation of the Autism Hub analysed the content of autism blogs and suggested that there is a divide between the aspirations of parents and autistic adults. Parental experience of the difficulties associated with raising an autistic child leads them to look towards science and medicine to tell them what causes autism and, more importantly, how to cure it. Adults who have come to an accommodation with their condition seek understanding and support but do not want to be cured of who they are. Some would go further and, taking their cue from Hans Asperger’s positive reference to autistic intelligence, (2) argue that there are particular aspects to autistic thinking that society could ill afford to lose if we ever found a way to eliminate autism. This idea of valuing people and accepting their differences is usually referred to as Neurodiversity.

There is also a history of divisions between parents and professionals. This has its roots in the discredited idea of refrigerator mothers from a time when psychodynamic theories reigned supreme. Parents rejected the received scientific and medical wisdom and were vindicated when autism’s biological roots were established in the late 1960s. Nowadays a significant number of parents reject the idea that autism is largely genetic in origin and believe that the growth in recorded numbers indicates an autism epidemic.  They believe that this “epidemic” can only be explained by neurotoxins that are poisoning the brains of otherwise healthy children.  Controversially they believe that vaccines are a prime source of these neurotoxins. Even more controversially they believe that biomedical interventions, including chelation, special diets and hyperbaric oxygen therapy can reverse this damage and “recover” their children. They are encouraged in their belief by a range of alternative therapists promoting pseudo-scientific theories and so-called cures. These “brave maverick doctors” and the parents who support them expect to be vindicated just as the opponents of the refrigerator mother theory once were.

The Autism Hub - Origins

The Autism Hub began in part as a response to this biomedical movement. The mainstream scientific and medical community dismissed them. But they continue to influence public opinion via the media and influential supporters in public life, especially in the USA. We regard their terminology referring to toxic children, devastating disease, autism tsunami etc. to be offensive and damaging to autistic people. Some of their treatments are potentially dangerous or distressing to autistic children with no discernible benefit. A number of hub bloggers are professionals in the fields of education, information technology, science and medicine who happen to be the parents of autistic children.  They have devoted their time and expertise on their blogs to debunking the myth of an autism epidemic and the claims of the biomedical movement.

The Autism Hub – Growth

This quack busting role is still important but our real growth has come from promoting the idea of Autism and Acceptance and Neurodiversity. This comes from the blogs of autistic people, the majority of Hub bloggers, who provide a thoughtful and often challenging perspective on their lives and also from parents who have learned that the best way to help their children is to work with their autism rather than against it. We identify our children’s strengths and seek to develop these rather than always focusing on deficits and disorders. Our children are so much more than the sum of their imperfections. Perhaps the most striking example from a parent is Estee Klar Wolfond’s’ “Joy of Autism” blog out of which has grown “The Autism Acceptance Project.”

The Autism Hub – Science

As well as debunking bad science and providing positive images of autism, the Hub seeks a constructive engagement with mainstream scientists and practitioners in the field of autism. We are concerned that so much science is presented in terms of “curing,” “preventing” or otherwise “eradicating” “this devastating disorder”.

1. The language used is extremely disturbing to autistics, who read this and think they are going to be eradicated. Research scientists may not mean that. But if the people they are trying to help feel threatened by what they hear perhaps scientists should choose their words more carefully. 
2. An unremittingly negative view of autism can also lead to acceptance of risks that would be unacceptable in a non-autistic population. To take a recent example, researchers at the National Institutes for Health proposed to test anecdotal claims for the benefits of chelation by chelating a sample of autistic children. They specifically ruled out children who had high levels of lead or mercury because it would be unethical to give placebo to children who needed treatment. We consider it equally unethical to treat healthy autistic children for metal poisoning and find it significant that no healthy non-autistic controls were to take part in the trial. Hub members blogged this extensively and lobbied the NIH with our concerns. The trial is halted for now because an animal study suggested that healthy individuals could suffer cognitive damage from unnecessary chelation.
3. Most autism research is presented in terms of deficits and dysfunctions. There are some well documented cases of autistic abilities. One of the Hub members, Michelle Dawson, is closely involved in the work of a lab that is promoting autistic abilities. She is autistic and, despite a lack of formal academic training is seen as a valued colleague by her fellow researchers, and has been lead author on one of their peer reviewed papers. (3)
4. Another Hub member, Amanda Baggs, achieved temporary celebrity status with a YouTube video that resulted in her sharing valuable insights with researchers at MIT.

The Future

Computers have been described as “wheelchairs for autistics.” The analogy holds good. Computer technology and the internet have empowered many who would find normal face to face interactions extremely difficult. They can build web sites, write blogs and create videos. Indeed, the Posautive blog on the Hub is devoted to bringing these videos to the wider world.
It is also the case that without the technology it is impossible to imagine the people who make up the hub ever coming together, separated as we are by class, culture and country. But we have come together. The NAS has a campaign for autistic adults, “I exist!” and full marks to them for that. But the internet is helping to develop a collective voice and vision for autism.

WE EXIST!

We exist in real life as well as on the web. We are here today at this gathering of the autistic community because we want dialogue and partnership with autism researchers. In the USA we have successfully joined an event at San Diego University where Hub members presented to the research community there. We are planning a similar event in the UK.

CONCLUSION

1. 1. Autism Hub is a not for profit grouping of autism bloggers from around the world funded entirely by its members.
2. We are the only online organization that brings together parents, practitioners and autistic people based on the principles of neurodiversity and autism acceptance.
3. We seek to advertise our presence to the broader autism community as we did with our recent presentation at the Summer conference of the Autism Institute at the University of San Diego. 
4. We welcome evidence based support for autistic people and research that addresses the hopes and aspirations of autistic people and their families. 
5. We feel that our perspective is one that is rarely heard within the research community and hope that a conference that poses the question, ‘How does research help people with autism?’ would want to hear our voice.

References

1. Clarke J, van Amerom G. Asperger’s syndrome: differences between parents’ understanding and those diagnosed.  Soc Work Health Care. 2008;46(3):85-106.

2. Uta Frith. 1991 Autism and Asperger Syndrome Cambridge University Press,

3. Michelle Dawson, Isabelle Soulières, Morton Ann Gernsbacher, Laurent Mottron. The Level and Nature of Autistic Intelligence Psychological Science Volume 18 Issue 8, Pages 657 - 662

September 17th, 2008 Posted by Mike | Neurodiversity, autism advocacy, research | 24 comments

Ben Goldacre versus Matthias Rath - Victory!

I am currently reading the excellent Bad Science by Ben Goldacre. If you want  a taster I recommend this edited excerpt from The MMR Hoax that forms the penultimate chapter. This is not just about autism. Brain Gym, homeopathy, Gillian McKeith, Patrick Holford, fishoil - nearly all the usual suspects are featured. There is one glaring omission - Matthias Rath. This is the man who went to South Africa and persuaded people to switch from their anti-retroviral AIDS medication to his nutritional supplement, VitaCell. He was hoping to do a deal with the South African government whose presiedent, Thabo Mbeki, took the stance that poverty rather than HIV was the biggest factor in the AIDS epidemic in his country. He was supported by his health minister, Dr Manto Tshabalala-Msimang who blocked the supply of ARVs in favour of the healing properties of lemon, garlic and beetroot. Dr Manto Tshabalala-Msimang had previously met with Matthias Rath.

Ben Goldacre has written about Rath on his blog but some of the links are broken and Rath does not get a mention in Ben Goldacre’s book. Now we know why. For the last year Rath has been pursuing Ben Goldacre and the Guardian for libel. On Friday Ben Goldacre reported on his blog, Bad Science that

This libel case has drawn on for over a year, with the writ hanging both in my toilet, and over my head. Although fighting it has been fascinating, and in many respects a great pleasure, it has also taken a phenomenal amount of my time, entirely unpaid, to deal with it. For the duration of the case I have also been silenced on the serious issues that Rath’s activities raise, the chapter on his work was pulled from my book, and I have been unable to comment on his further movements around the world.

He also told us that  Rath had finally dropped his case. So instead of a chapter, Rath will now be the subject of a book.

For my part, I will probably now write a swift book on Rath and South Africa, as a way to make all the fascinating extra information I’ve had to dredge through useful to others, and to try and recoup something so that my time was not wasted. It will be meticulously well referenced and carefully written.

Today it was front page news in the Guardian with extensive features inside. Two articles by Ben Goldacre and an excellent leader article. Full marks to the Guardian for backing Ben Goldacre. They have been awarded interim costs of £220,000 and will be pursuing Rath for the rest of the estimated half a million pounds it has cost them to defend this action.  Let us hope that the damage to his reputation and his wallet will make him less of a threat to human health. Just how reprehensible Matthias Rath is can be judged by these witness statements from South Africa also published by the Guardian today. Here is one testimony to Rath’s crimes.

Mandla Majola is the coordinator of the Treatment Action Campaign (TAC) in Khayelitsha, a township outside Cape Town. TAC educates people about HIV and Aids:

“Matthias Rath arrived in Khayelitsha in around 2005. He opened three offices where his vitamins were distributed from. Posters were put up on the bridge, at the taxi rank and bus and train stations. The people’s understanding of Rath’s message was that antiretrovirals (ARVs) were toxic and that he was encouraging people not to take them, but to take his vitamins instead. They also understood him to be saying that his multivitamins were a cure for HIV. The posters with his messages confused people. People who were sick, but had not yet started taking ARVs became reluctant to start and others stopped the regimen. I am aware of many cases of people who have been confused by Rath and Sanco and who have lost their lives because of them.”

The Guardian also features another hero in this case, veteran anti-apartheid campaigner and HIV positive Zackie Achmat who founded the Treatment Action Campaign.

And just to bring this back on topic does anyone remember Jaquelyn McCandless MD, the retired sex therapist who became an autism expert when her granddaughter was diagnosed and is now a DAN! practitioner and author of the book, Children with Starving Brains? She has also been busy in Africa recruiting HIV positive women for a “study” into the effects of low dose naltrexone on AIDS. Two years ago she was in Liberia but that cannot have worked out because the study has moved to Mali.

Naltrexone is a recognized treatment for alcohol and drug abuse and according to Wikipedia has also been suggested as a treatment for erectile dysfunction in men and smoking in women and Crohn’s disease. Low dose Naltrexone has also been suggested for multiple sclerosis,  Parkinson’s, cancer, autoimmune diseases such as rheumatoid arthritis or ankylosing spondylitis, and central nervous system disorders. And it has also been suggested as a treatment for, you’ve guessed it, Autism.

Another brave maverick doctor with a quack cure for everything heads for Africa. I wonder if Ben Goldacre wants to write another book.

September 14th, 2008 Posted by Mike | Quackery, journalism | 4 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

UK Press and MMR: Let me hear your voice, please.

On Wednesday I blogged about an important new study that added to the weight of evidence that there is no link between the MMR vaccine and autism. You would imagine that the UK press would be all over it. After all, we invented the MMR/autism crisis back in 1998 when the medical establishment failed to address the fears that were articulated by Dr Andrew Wakefield at that press conference. The media sensed a good story and magnified those fears until they became endemic in society. 10 years later the story rumbles on and now measles is endemic in society again.

Ben Goldacre, one of the few noble exceptions to the generally abysmal reporting, recently castigated fellow journalists for their role in creating and perpetuating what he describes as the Media’s MMR Hoax. In recent weeks they seem to have got the message. Reporting on MMR is beginning to reflect the scientific evidence. No doubt editors’ minds have been concentrated by the news that we face a measles explosion. A cynic might suggest that they have merely dropped autism in favour of the latest health scare. Nevertheless there was near universal and favourable coverage in August of a government initiative to vaccinate the estimated 3 million children in the UK who have missed one or both of their MMR jabs.

So I was eagerly awaiting the coverage of this novel Columbia University study. It was novel for three reasons.

Firstly, it was a direct attempt to replicate the original study by Wakefield et al that created the furore in the first place. This has been a constant criticism from Wakefield supporters of every other study that has cast doubt upon his hypothesis.

Secondly, the lead investigator, Mady Hornig had already endeared herself with the vaccine/autism community with a controversial mouse study on the effects of the vaccine preservative thiomersal. There never has been any thiomersal in the MMR vaccine but the anti-vaccine parents tend not to discriminate and regard all vaccines as equally bad for their children.  

Thirdly, the researchers had consulted with this constituency, described as the autism/parent advocacy community, as part of the process of study design.

This was not an establishment coverup or PR exercise. These researchers were looking to find something and wanted the parents on board. Well, they looked and found nothing. The parents jumped ship and issued stinging rebukes through their advocacy organizations  - Safe Minds and National Autism Association (NAA). I discussed this yesterday. But what of the British  press?

Over on Black Triangle, Anthony Cox had found nothing, zilch, zero   by yesterday afternoon. Then a breakthrough - a free newspaper, the Metro carried the story, followed by the Mail and the Telegraph. These are two of the newspapers that I have castigated  in the past for doing more than most to keep the vaccine scare going. And now they are leading the way with accurate reporting of some real research. Who will follow?

So far I have checked the websites of all the newspapers wth national distribution in the UK - all nine of them and the four television news services with universal coverage - free to view, no cable or satellite needed. All the other quality papers - the Times, Independent and Guardian have ignored it. The only tabloid to pick it up was the Daily Mirror. None of the TV news channels has touched it.

They must know about it so why the silence? UK media, let me hear your voice.

September 6th, 2008 Posted by Mike | MMR, journalism, research, science | 2 comments

Hornig, MMR and absent friends.

The press release issued by the Columbia University Mailman School of Public Health that announced the results of their recent study into MMR and autism ended with this remarkable statement from  W. Ian Lipkin, John Snow Professor of Epidemiology and director of the Mailman School’s Center for Infection and Immunity.

“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 understand this to mean that the research team consulted with those sections of the parent/advocacy community who have voiced concerns about a possible connection between MMR and autism. The obvious candidates are SafeMinds, the National Autism Association (NAA), Generation Rescue and Talk About Curing Autism (TACA)

I visited TACA first. They make a big deal out of having Jenny McCarthy as their spokesperson and she blamed MMR for her son’s autism when she appeared on Oprah. But there was no mention of this latest research on their website.

Then I went to Generation Rescue. They have Jenny McCarthy as a board member and just like TACA they feature her prominently on their website. And just like TACA they do not mention this new research either.

Next stop SafeMinds. Nothing there either, which is strange. Because there is a press release that purports to come from SafeMinds circulating on the internet. Kev has commented on it over at Left Brain Right Brain and I have no reason to doubt its authenticity. It first appeared on EOHARM, one of those anti vaccination, autism parent/advocacy email lists. It begins:

A scientific study released today examined the hypothesis that measles virus persisting in the intestinal tract from the MMR vaccine causes or exacerbates autism. The study refuted this hypothesis for the majority of autism cases…

That is stretching the truth slightly. According to Columbia University the lead researcher actually said,

“Our results are inconsistent with a causal role for MMR vaccine as a trigger or exacerbator of either GI difficulties or autism [...] The work reported here eliminates the remaining support for the hypothesis that autism with GI complaints is related to MMR vaccine exposure. We found no relationship between the timing of MMR vaccine and the onset of either GI complaints or autism.”

That sounds to me as if they are saying the study refutes the MMR hypothesis in ALL cases, not just the majority.

…while validating the link between gastrointestinal (GI) disease, inflammation and autistic regression. The study design precluded assessment of a role for acute measles infection from MMR in a subset of children with autism…

More spin. The study was designed to test Wakefield’s hypothesis that persistent measles virus infection in the gut was associated with GI disorders and autism. Is there anything anywhere in the literature to suggest that anybody has developed autism as a result of an “acute measles infection from MMR? Never mind autism. What is the prevalence of acute measles infection from the vaccine?

…and did not examine the role of other vaccines, vaccine components such as thimerosal, or other environmental exposures which can trigger gastrointestinal and immunological problems…

And what about everything else that it did not examine? Science does not work by examining everything at once. You isolate the variable that interests you and try to control for other factors that might confound your results. Did Wakefield examine the role of other vaccines etc. in his original study?

…The topic is of public health interest due to the increasing autism epidemic and parent and scientific reports connecting mercury and vaccines, including MMR, with autism onset.

Not exactly. This topic is of public health interest because anti-vaccine scares have led to an increase in cases of measles in Europe and America.  The autism epidemic is a canard. And despite what SafeMinds thinks, most of the science reports a disconnect between mercury and vaccines and autism. The press release continues in similar vein. It is obvious that even if SafeMinds were one of the parent/advocacy groups consulted on the design of the study they are not happy with it.

NAA at least did publish their press release on their website. Orac has done an excellent job of analysing it over at ScienceBlogs, so I don’t have to. Suffice to say that NAA are not enamoured of Mady Hornig’s latest offering and there is no evidence that they were involved in the design of the study.

It must be remembered that until a short while ago Mady Hornig was a hero in these circles. Her mouse study was lauded as proof of the thiomersal/autism connection and printed on their websites. She was a keynote speaker at their conferences and a key figure in the whole vaccine/autism movement. One “bad” study and they have turned on her.

So who else is there to consult in the autism parents/advocacy community? It occurs to me that probably the aforementioned groups were consulted about their concerns and the scientists went away and incorporated those concerns in their study. But the data came back negative. This happens all the time in science. You think you know something. You test it and you learn that you were wrong. So you think again.

The problem with TACA, NAA, Generation Rescue and SafeMinds is that they have convinced themselves that they already have the answer. If the science does not validate their beliefs they do not think again. Instead they reject the science and often malign the motives of the scientists.

On a recent US talk show a caller came out and said there was nothing that science could say or do to persuade her to alter her beliefs about vaccines and autism. She is another of Jenny McCarthy’s acolytes. McCarthy is not to blame for all this. She came late to a party that was already well established. They lionize her because of her celebrity and celebrity endorsements are all they have left.

Unfortunately celebrity seems to count for a lot more than science in a lot of the media. McCarthy is due to launch another book with another apearance on Oprah. Her endorsement prolongs the life of a movement that no longer commands any scientific support. Doubtless her presence will recruit a few more parents to the cause and further threaten vaccination rates. When vaccine preventable diseases then make an inevitable comeback she will attract an equally inevitable opprobrium.

But she is just a mum like most of the foot soldiers in this charade. Jenny McCarthy may be foolish and misguided, but misguided by whom? The doctors and scientists who have abandoned all professional standards in order to perpetuate the vaccine-autism hoax are the culpable ones. Who will call them to account?

September 6th, 2008 Posted by Mike | Andrew Wakefield, MMR, science, vaccines | 6 comments

MMR and Autism - No connection

10 years go a remarkable press conference took place to mark the publication of a new study in the Lancet. It was remarkable because this was a preliminary report, based on a series of only twelve case studies - not the normal stuff of press conferences. It suggested a new disorder, autistic enterocolitis. There had been suspicions about a link between gut disorders and autism for years. While this study was far too small to settle the issue it did suggest that a large scale study was called for. But why a press conference?

Richard Horton, editor of the Lancet, explains

“In the week of the paper’s publication, some of the Royal Free research team decided to hold a press conference to announce their findings. This gave them an opportunity to express the benefits of the MMR vaccine and the inconclusive nature of their results in respect to the link between the syndrome and the vaccine.” (MMR Science and Fiction by Richard Horton. Granta Books 2004)

So why did they issue this scaremongering press release, which Horton quotes in his book?

“The majority opinion among the researchers involved in this study supports the continuation of MMR vaccination. Dr Wakefield feels that vaccination against the measles, mumps and rubella infections should undoubtedly continue but until this issue is resolved by further research there is a case for separating the three vaccines into measles, mumps and rubella components and giving them individually spaced by at least 1 year.”

The answer, implicit in Horton’s account, is that Wakefield was a dynamic researcher who was shaking up a moribund department of medicine that had been resting on its laurels. He was their star player and was granted more leeway than normal in the hope that he would deliver glittering prizes. Wakefield was pursuing his own glittering prize. He was convinced that there was a connection between measles virus and inflammatory bowel diseases like Crohn’s syndrome. He suspected that measles vaccine might also be involved. He was developing his own single vaccine for measles that would bypass these difficulties and had issued a patent application in the name of the Royal Free Hospital in 1997. He was also employed by solicitors to demonstrate a link between MMR and autism, particularly where it involved symptoms of inflammatory bowel disease.

How much of this was known to his colleagues at the Royal Free? Did it influence their better judgement and allow Wakefield to hijack the press conference? Would there even have been a press conference without Wakefield? Did Wakefield’s ambition and personal conviction lead him to breach the ethics of his profession? All this is still the subject of conjecture and debate and, with regard to ethics, ongoing disciplinary hearings at the GMC. What is beyond conjecture is that, despite no credible evidence to support it, the idea that MMR causes autism became firmly implanted in the public consciousness. Vaccination rates declined and measles is once more endemic in the UK. It is widespread in Europe and spreading in America where concerns about the safety of a mercury preservative in vaccines coalesced with concerns about MMR to create vaccine resistant hotspots, primarily in affluent areas where people can afford the privilege of being the “worried well.”

All this comes at a time when deaths from measles are declining rapidly in the developing world thanks to a vigorous campaign of vaccination. To place this in context, deaths from measles are still statistically insignificant in Europe and North America. Success for the vaccination campaign in Africa, Asia and South America means that “only” around 250,000 children died from measles related causes last year compared to the 750,000 that was commonplace a decade ago.

Given the propensity of wealthy Americans and Europeans for foreign travel to exotic places it would be a tragic irony if the fragile success of the vaccination programme in the developing countries was compromised by western tourists carrying the virus into unvaccinated parts of the third world. It would be even more tragic if the anti-vaccine movements in the USA and Europe gained a foothold in those countries that desperately need vaccines and undermined the efforts led by the World Health Organization, with equally devastating consequences.

So one would hope that a definitive study that effectively disproves any link between MMR and autism would be trumpeted from the rooftops and receive coverage that was commensurate with the thouands of scare stories about MMR that have been in circulation for at least a decade since Wakefield’s inglorious announcement.

We shall soon have an opportunity to judge. Less than an hour ago Forbes Magazine reported on a new study which found no relation between MMR and autism. Of course there have been numerous studies before. These have singularly failed to persuade the Wakefield acolytes and their media friends. As Ben Goldacre noted last week:

“In the Journal of Medical Virology March 2006 there was a paper by Afzal et al, looking for measles RNA in children with regressive autism after MMR vaccination, using tools so powerful they could detect measles RNA down to single-figure copy numbers. It found no evidence of the vaccine-strain measles RNA to implicate MMR. Nobody wrote about this study, anywhere, in the British media (except for me in my column).

This was not an isolated case. Another major paper was published in the leading academic journal Pediatrics a few months later, replicating the earlier experiments very closely, and in some respects more carefully, also tracing out the possible routes by which a false positive could have occurred. For this paper by D’Souza et al, like the Afzal paper before it, the media were united in their silence. It was covered, by my count, in only two places: my column, and a Reuters news agency report

[...]

Journalists like to call for “more research”: here it was, and it was ignored. Did the media neglect to cover these stories because they were bored of the story? Clearly not. Because in 2006, at exactly the same time as they were unanimously refusing even to mention these studies, they were covering an identical claim, using identical experimental methodology: “US scientists back autism link to MMR” said the Telegraph. “Scientists fear MMR link to autism” squealed the Mail.

What was this frightening new data? These scare stories were based on a poster presentation, at a conference yet to occur, on research not yet completed, by a man with a well-documented track record of announcing research that never subsequently appears in an academic journal. This time Dr Arthur Krigsman was claiming he had found genetic material from vaccine-strain measles virus in some gut samples from children with autism and bowel problems. If true, this would have bolstered Wakefield’s theory, which by 2006 was lying in tatters. We might also mention that Wakefield and Krigsman are doctors together at Thoughtful House, a private autism clinic in the US.

Two years after making these claims, the study remains unpublished.”

It will not be so easy to ignore this report.

1. The study is a deliberate attempt to replicate Wakefield’s original study. It looks for measles in the gut of autistic children with bowel disorders. Furthermore it includes a control group of non-autistic children with bowel disorder.
2. It uses three different laboratories to test its results, including the original laboratory that Wakefield used. This lab, run by Professor O’Leary, had its results in the Wakefield study dismissed by world expert Stephen Bustin, because of cross-contamination that made them meaningless. Now that it has literally cleaned up its act its results concur with the other two labs: no evidence of measles in the intestines of autistic children with bowel disorder.
   • “We found no difference in children who had GI complaints and no autism and children who had autism but no GI complaints,” Dr. Ian Lipkin of Columbia University told reporters in a telephone briefing.
3. There was no temporal association between MMR vaccination and onset of GI symptoms.
   • “We found no relationship between the timing of MMR vaccine and the onset of either GI complaints or autism,” Dr. Mady Hornig, also of Columbia, said in a statement.

Look at those names. Mady Hornig was the author of a controversial study that suggested a link between the mercury in some vaccines and autism. Ian Lipkin is her long time collaborator. Rick Rollens, a Californian politician who has been a powerful advocate for a vaccine induced autism epidemic and used to believe that the MMR vaccine was the final straw in his own child’s autism is quoted by Forbes commenting favourably on this study.

Not even the most diehard anti-vaccine activist could claim that this is just another big pharma/big government sponsored cover up. Or could they? What they are claiming, judging by some of the anti-vaccine contributors to the Environment of Harm email list is even more bizarre. Because O’Leary’s lab has produced bone fide results that contradict Wakefield they are arguing that the results he produced supporting Wakefield must be equally valid. I kid you not. It is as if someone watching Gordon Ramsay’s Hells Kitchen were to argue that, because the eventual winner delivered a perfect service in the final, their undercooked disaster in the opening round that very nearly got them eliminated also had to be cookery of the highest order.

I suspect that the true believers will never be persuaded. [Update: I was right. Kev has just blogged the NAA response. They call this a CDC study throughout to avoid admitting that "one of their own" Mady Hornig authored this study. NB for new readers: CDC in the NAA demonology equates to big pharma/government cover-up.] But I am encouraged when open minded scientists can pursue a hypothesis, believing it to be correct, and publish results that prove themselves wrong. So full marks to Lipkin and Hornig for upholding scientific values.

More blogging here

http://www.blacktriangle.org/blog/?p=1833

http://leftbrainrightbrain.co.uk/?p=1252

http://www.autismvox.com/mmr-vaccine-does-not-cause-autism-not-that-you-didnt-know-that-already/

http://blogs.discovermagazine.com/badastronomy/2008/09/03/antivax-new-evidence-shows-again-no-link-to-autism/

http://onedadsopinion.blogspot.com/2008/09/now-is-it-over.html

UPDATE

Now Orac joins the fray.

September 4th, 2008 Posted by Mike | Andrew Wakefield, MMR, Uncategorized, science, vaccines | 5 comments

Autism’s damaging delusion

The latest issue of Communication, the members magazine of the National Autistic Society contains a two page article by Dr. Mike Fitzpatrick, an edited excerpt from his forthcoming book, Defeating autism, a damaging delusion, which is due out in October. Dr Fitzpatrick’s son was diagnosed with autism in 1994. His earlier book, MMR and Autism, was a vigorous defence of the vaccine combined with a thorough reply to Andrew Wakefield and a sustained rebuke of the medical establishment whose own ham-fisted response enabled Wakefield and his supporters to dominate the media coverage.

The resulting drop in vaccination rates has allowed measles to become endemic in the United Kingdom once more. Meanwhile autism prevalence has continued to increase to the point were the NAS estimate of a prevalence rate of 1 in 112, which attracted so much criticism in the 1990s when it was first suggested, is now increasingly supported by data from epidemiological studies in the UK.

In MMR and Autism Dr Fitzpatrick briefly discusses what he calls “Alternative Autism,” (chapter 6 pp 77 -100) which roughly equates to the biomedical movement. In his latest book this alternative autism takes centre stage. I detected at least four themes in the excerpt in Comunication.

1. These alternative therapies do not work.
2. The science behind them is flawed.
3. Some of these treatments are potentially dangerous.
4. The real damage is in the way that the quest to “defeat autism” demonizes autism, and by extension, people with autism are similarly demonized.

I do not think that Dr Fitzpatrick is a recruit to the ranks of Neurodiversity just yet. But in the absence of the science based medical interventions to which he aspires, he is clear that

The most damaging aspect of the crusade to ‘defeat autism’ is the attitude it expresses towards children with autism, indeed towards people with autism more broadly. Parents who share the unorthodox biomedical outlook sometimes project a negative view of autism as a destructive disease process. They can portray their children as being ill, listing their physical symptoms in the most graphic terms to illustrate the extent of their disease and disability. Parents often describe their own predicament in terms of grief and loss and as one of unremitting  battle against the corrosive impact of autism on their child, their marriage and their wider family. This implicitly disparages and dehumanizes people with autism. It is not surprising that such a negative attitude towards autism is sometimes expressed in a negative attitude towards the autistic child, who is depicted in metaphors of toxicity and disease. (Communication:Autumn 2008 p15)

I fully expect a number of parents to be outraged by this. They will take it to mean that Dr Fitzpatrick is suggesting they do not love their children. I take it to mean that, for some parents who adopt the unorthodox biomedical outlook, their love will be measured by the lengths they are willing to go to in order to provide these biomedical treatments. I have seen this expressed as “Love the child. Hate the autism.” And your love for your child is often presented as a function of how much you are willing to sacrifice in order to express your hate for autism.

Dr Fitzpatrick offers a more positive alternative.

My aim is to encourage parents to emphasise the positive in relation to their autistic children, to pursue interventions for which there is good evidence of benefit (and some guarantee of safety) and to avoid the diversions and dead ends offered by the perspective of ‘defeating autism.’ (Communication:Autumn 2008 p15)

This reminds me of another article in Communication by Rita Jordan last winter which argues for a distinction between autistic spectrum disorder and autistic spectrum condition. Professor Jordan’s argument is that if we use the term autistic spectrum for both the condition and the disorder, in the first case we should be arguing for accommodations to take account of a recognised difference, while in the second case we have a disorder that requires interventions. In reality most people on the autistic spectrum  probably require both accommodations and interventions. The balance will doubtless change during their lifespan. Professor Jordan asks

“So what would this mean for diagnosis? It would still be important to diagnose the disordered group and this could still be a medical category, but based not on differences from the norm (typical) but on the basis of disruption of development and functioning. Those who just have a different processing style would still need a way of having this identified to enable autism-friendly environments and approaches and to put them (and their parents) in touch with similar others. But this need not be a medical ‘diagnosis’ but a psychological assessment. Both groups need to have their common humanity respected and so, even with the best intentions, we should avoid characterising non-typical functioning children as ‘non-human.’

‘Defeating autism’ would then seem absurd: no-one would want to reduce the diversity of human nature and so deny the contribution of so many unique individuals.”  (Communication: Winter 2007 p12)

Dr Fitzpatrick and Professor Jordan are tackling this question from different perspectives and their positions are quite different. But in contrast to the “unorthodox biomedical outlook” I can find common ground with both their positions and can envisage a time when we all three might be in broad agreement. I see no such prospect with proponents of the “unorthodox biomedical outlook.”

That seems the most important point to me. Some of us want to know and others think they know already. I would like to think that Dr Fitzpatrick, Professor Jordan and myself are all open to persuasion. And part of that openness has to include the possibility that we are wrong and the biomedders are right. I see little evidence to suggest a similar attitude in the biomed camp.

August 29th, 2008 Posted by Mike | Communication, DAN!, Uncategorized, biomedical interventions, science | 15 comments

Placebo effect in autism

PLACEBO EFFECT

By happy coincidence I have just read a very interesting article on the placebo effect in New Scientist and listened to  two radio broadcasts on the same subject from Ben Goldacre. There are also discussions of both broadcasts here and here on Ben’s Badscience blog.

Placebo effect is often used disparagingly with reference to the anecdotal evidence for alternative and complementary therapies. There is a common misconception that the placebo effect is not real. Patients are deluding themselves. What they really need is a dose of allopathic medicine with those expensive molecules created by big pharma preciely targeting the locus of the disease in the body and eliminating it.

Both the article and the broadcasts challenge that idea. As Ben says in one of the broadcasts, if we support evidence based medicine we have to admit that according to the evidence the placebo effect is real. He gives some striking examples:

• Patients improving with their pacemakers switched off.
• Branded painkillers proving more effective than unbranded ones.
• Placebo proving as effective as some medications for irritable bowel syndrome.
• People who knew they were on placebo reporting benefits.
• Some people even managed to experience negative side effects of a drug while on placebo.

Ben makes the point that it is not the pink pill (though pink placebo pills do work differently to blue placebo pills) or the faux acupuncture or the placebo pain control cream that is working. Within the total context - the white coat, stethoscope, diplomas on the wall, intangibles like bedside manner etc - the pill may seem to be effective. But the placebo effect is more to do with the total doctor/patient relationship. The placebo effect works with real medicines as well as placebos. Patients who knew they were receiving morphine reported less pain than patients receiving the same dose without being told.

The challenge now is to fully understand the complexities of the placebo effect and use it effectively and ethically to improve patient care and patient outcomes. We may have something to learn from the alternative therapists. The ones who truly believe in what they are doing are probably very good at making full use of the placebo effect even if they do not fully understand it.

OUR EXPERIENCE

We experienced this with a homeopath and a practitioner of the Bowen Technique, a light touch massage. At the time we were having a hard time. Our son was getting nothing from health or education services and was severely stressed, as were we all. The benefits we got from our sessions were simple. They listened. They were sympathetic. They were gentle with us. They were such nice people. They really wanted to help us. They really believed they could help us and we wanted to believe. I tried some of the therapy myself but there was something not quite right about the guy doing the massage. We developed a sense of unease and the placebo effect diminished.

When I discussed the apparent benefits with our son’s paediatric psychiatrist he dismissed it airily as the power of suggestion. When my son had a meltdown in his office on his first visit and had to be physically restrained I could not help wishing that this psychiatrist could calm somebody with the power of suggestion.

AUTISM AND PLACEBO 

The placebo effect does not mean that alternative therapies work in the sense that their theoretical underpinnings are correct. But it is such a powerful effect that it may be working through the therapy in some cases even if the therapy per se does not work.  If we accept that one of the major causes of challenging behaviour in autistic children is the mismatch between their social understanding and the expectations of family, friends or school then an obvious way to help them is to revise our expectations. Electing for any type of therapy effectively does that.

BEHAVIOURAL EXAMPLE

This has happened many times in my career. A pupil is acting inappropriately. Attempts to control the behaviour are not working. We stop and carry out a functional behavioural analysis. We think we have stopped intervening while we collect baseline data. But from the child’s point of view we have changed our intervention. And so his behaviour changes. And we have changed ourselves as well. If I am charting incidents I feel in control. I am no longer challenged by the situation.  I no longer feel challenged by the child. I no longer provoke the behaviour I am seeking to control.

BIOMEDICAL EXAMPLE

I go to my alternative practitioner who tells me my child has gut problems that are causing his behaviour. We need a special diet and some supplements. It is not his fault. It is my fault for feeding him the wrong stuff. So I stop blaming him for his behaviour. I cut the kid some slack while waiting for the diet to kick in. I change and my child responds. I credit the diet and the doctor who prescribed it.

I am not sure if those two examples are strictly speaking the placebo effect. But they fit the general pattern of a total context having the power to explain what is happening more fully than the obvious recourse to the pink pill, the chart or the change of diet.

Ben’s second programme concludes with a doctor arguing that the power of placebo works best in those conditions were there is not a specific disease pathway amenable to a pharmaceutical magic bullet. Autism is very much like that. Yet the alternative therapists who infest our community claim precisely the opposite. They believe they know the precise biomedical pathways that lead to autistic behaviour and claim to have targeted interventions for each one. Mainstream medicine cannot claim much in the way of moral high ground in relation to autism. But its acknowledged ignorance and impotence in the face of this enigmatic condition is surely preferable to such hubris?

August 26th, 2008 Posted by Mike | Quackery, biomedical interventions, science | 6 comments

Autism in Brunei

The Brunei Bulletin carries this report on autism I loved the theme, “Don’t DIS the Ability.”

Autism Conference advocates ASD as strength.

The 6th Brunei National Conference on Autism was held yesterday morning at the Civil Service Institute with the theme “Don’t DIS the Ability” which advocates the Autism Spectrum Disorder (ASD) as an ability, an advantage and as strength.

“Time is our enemy,” stated Malai Haji Abdullah bin Malai Haji Othman, President of SMARTER Brunei, at the three-day conference.

“Our programmes would be obsolete in six months if we don’t bring in outside people for new ideas,” he added as he reiterated the necessity of the annual conferences in improving their services and methodologies.

The Society for the Management of Autism-Related Issues - In Training, Education and Resources, more commonly known as SMARTER Brunei, was established in September 2001and has since been fervently advocating their cause.

One of the main objectives of the conference is to review the SMARTER STEP programme and discern its relevance in the developmental process of individuals with Autism (IWA).

The STEP programme is a holistic approach to seven essential, independent living skills designed to support, assist, facilitate and enhance the development of IWA through real activities in a real environment.

The “cradle to grave” seamless journey to independence provides an intensive programme for early childhood, teenagers and adults.

In yesterday’s session, invited speaker Yvette Cook presented a paper on the most common issues of food refusal and allergies, as well as sleep issues faced by IWA and their families.

Meanwhile, Debbie Smith spoke to parents, teachers and other participants on developing communication through alternative methods.

Other invited speakers during the duration of the conference are Associate Professor Dr Verity Bottroff, Vice President of Autism South Australia; Joanna Zeitz, specialising in cognitive behaviours therapy and Manager of the Adult Services for Autism in South Australia; and Peter Hill, Pharmacy Dispensary Manager at Gosford Hospital in NSW Australia with particular interest in the area of Autism.

The conference will end tomorrow with the hopes of achieving their vision of an Autism Friendly Society that will enable IWA to adapt and live independently through the home, school and community, as well as the public and private sector.

I wish the reporter had elaborated more on the abilities, advantages and strengths of autism. Most of the report was about the intensive interventions they used to enable autistic individuals to live independently and, presumably to make use of their autistic abilities, advantages and strengths. But again the report is short on detail. I did notice a significant input from speakers from Australia and no mention of epidemics, vaccines or devastating disorders. If anyone has more information on this conference or the organization behind it  would love to hear from you. 

August 23rd, 2008 Posted by Mike | autism acceptance, autism advocacy | one comment

Talk back to IACC

“requires the Interagency Autism Coordinating Committee (IACC) to develop and annually update a strategic plan for ASD research.”

As part of the process the IACC consults with members of the autism community through a number of mechanisms. Some parent advocates and one autistic person are members of the IACC . They get the chance to meet with researchers and clinicians and shape the autism agenda. There is another overlapping group the IACC Strategic Planning Workgroup and four scientific workshops.

Unfortunately, for reasons I have been unable to fathom, one of the parent advocate groups that has been involved with IACC is the anti-vaccine group Safe Minds. Lynn Redwood, Laura Bono and Mark Blaxhill have had a disproportionate voice in IACC’s workings to date. I doubt that they have been able to influence the scientists with their ideas but I am concerned that the research community is getting the wrong idea about the autism community if it thinks that these are typical representatives of us. I am also upset by the way they have operated within IACC. They make their unfounded statements in the meetings and feed them back to their media friends who report them as if IACC support them. Take this example from David Kirby.

July 15, 2008 - A workgroup report of the IACC (the Interagency Autism Coordinating Committee, which includes HHS, CDC, NIH and others) says that some members want “specific objectives on vaccine research” included in the new, multimillion-dollar national autism research program, as mandated by Congress in the Combatting Autism Act.

Notes from the meeting indicate that workgroup members want federal researchers to consider “shortfalls” in epidemiological studies cited as proof against a vaccine-autism association (by Offit, Peet, et al); as well as a specific plan “for researching vaccines as a potential cause of autism.” The workgroup also says that the final research agenda should “state that the issue is open.”

Part of the problem is that the scientists do not argue back. Perhaps they believe that autism is such a terrible affliction that they would be wrong to criticize parents. But these Sefe Minds parents are cynically abusing their politeness to pursue a political agenda and misrepresenting the scientists silence as support for their ideas.

Now we have a chance to put that right. IACC has called for public comments in a Request for Information on the Interagency Autism Coordinating Committee Draft Strategic Plan for Autism Spectrum Disorder (ASD) Research.

They include instructions on how to make you input

Responses will be accepted until September 30, 2008 via email to iacc@mail.nih.gov.  Please limit your response to two pages (approximately 1,000 words) and mark it with the RFI identifier NOT-MH-08-021 in the subject line.  You will receive an email confirmation acknowledging receipt of your response, but will not receive individualized feedback on any suggestions.  The collected information will be reviewed by the IACC, may appear in reports, and shared publicly on the IACC website: http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/index.shtml.

I suggest that it would be good for them to get as many responses as possible from anyone with  a connection to autism - autistic people and their familes, researchers and practitioners - to demonstrate the full extent of our community and show that Safe Minds is unrepresentative of our views. And you do not have to be American to respond. The US research budget for autism is massive in comparison to anything else in the world today. The direction that US research takes will influence researchers all over the world. And their findings will impact on the world autism community. We are all affected by this. We should all make our thoughts known while we have this opportunity.

Other posts on this subject include:

LeftBrainRightBrain 

Neurodiversity

AutismVox

I have no doubt that Safe Minds, Generation Rescue, NAA, TACA and all the other anti-science autism groups are mobilizing their members to comment to the IACC. It is up to us to improve the signal to noise ratio and make our voices heard.

August 21st, 2008 Posted by Mike | interagency autism coordinating committee, research, science, vaccines | 2 comments