Action For Autism

A moral framework for genetic testing

First posted on LBRB May 13, 2009
Today’s meeting of the Human Genetics Commission consultative panel was both informative and reassuring. Informative because some of the leading professionals gave of their time to brief us on three issues – screening children for genetic disorders, pre-conception genetic screening and pre-implantation genetic diagnosis. It was reasssuring because the Panel showed a good grasp of the issues and was very much aware of the ethical dilemmas that can arise and the need for guidelines. The HGC is keen to hear those concerns and see that they are included in representations to government agencies and law makers.

All this relates to autism indirectly but is beneficial because it suggests a favourable ethical climate in which to discuss future advances in genetic research into autism. Interestingly, one of the experts, who is closely involved in genetic testing did not believe we were going to see a genetic test for autism any time soon, if at all.

My only regret is that the nuanced discussion of complex moral issues that surround the daily advances in genetic science and medical technology are not reflected in media reports of this important topic – as Simon Baron-Cohen recently found to his cost and ours when he tried to initiate a public discussion of the issues.

Edit – I also regret the typos (now corrected) in my initial posting from Euston Station.

July 11th, 2009 Posted by Mike | LeftBrainRightBrain, ethics, genetic testing | no comments

Action for Children end TV ad campaign

The Action for Children TV commercial about the Story of Dan, a young man with Asperger Syndrome will not be shown after tonight, Sunday 8th February. According to the Action for Children blog the campaign was always meant to end today. Which is strange because both Barbara Jacobs and I received emails from Action for Children which said the commercial would run until next Sunday.I published mine here.

Action for Children’s responses to their critics have been confusing and inconsistent. It seems that different people from different departments have been dealing with a public furore which they clearly did not expect and struggled to understand. Initially people wrote to Gary Day, head of Supporter Care at Action for Children. Sharon published his reply to her in which he stated that

Dan tells his own story in his own words, and he chose to name his condition, the drawings that you see were also drawn by Dan, the pictures depict how he saw himself before we as a charity got involved and helped Dan and his family.

When I wrote I received an out of office reply and subsequently an email from Emma Alford, the Contact Centre Manager which was slightly different.

In our second advert, Dan chose to name his condition and approved the concept and drawings. These pictures depict how he saw himself and what he felt he needed help with before Action for Children helped Dan and his family for a number of years.

The blog is written by Fiona Lydon who works in the communications team at Action for Children. She writes,

The monster in the advertisement is absolutely not Dan’s autism. It is the way that he himself described how he felt his behaviour was before getting this support. Dan wanted to talk specifically about his autism and we believe it would have been wrong for us to censor him or his ideas in any way.

We also learn from Fiona that Dan was a victim of late diagnosis. This combined with lack of support meant he did not understand his behaviour. He and his family were under pressure that could have been avoided if the right support had been in place. According to Fiona Action for Children provided that support. Dan was a success story and he wanted to tell his story in his own words.

The monster in the advertisement is absolutely not Dan’s autism. It is the way that he himself described how he felt his behaviour was before getting this support. Dan wanted to talk specifically about his autism and we believe it would have been wrong for us to censor him or his ideas in any way.

As I pointed out in my reply on their blog (currently in the moderation queue - well it is Sunday night) presenting Dan’s view without any comment or clarification is not about censorship. It shows a lack of responsibility. And if, indeed, the monster was not a depiction of autism, but was in fact a depiction of the anger and frustration that autistic people feel when they are not properly supported or understood, can we look forward to a sequel in which Dan can talk about his autism in a new light now he is getting the support he needs?

So we have had mixed messages, contradictory statements and a slowly emerging back story of late diagnosis and anger and frustration at the lack of support and understanding that helps to explain the ad. BUT the millions who saw the ad on TV do not have access to that back story or the insights that come from a personal acquaintance with autism. A campaign that has to explain itself after the event has failed in its purpose. Let us hope that lessons will be learned and that not too much actual damage has been done.

February 9th, 2009 Posted by Mike | campaigns, ethics | 7 comments

Action for Children reply to critics

Like many of you I wrote to Gary Day at Action for Children about the Story of Dan ad campaign. Because some of you had already shared your replies  I pointed out that I was not interested in their stock response. So they replied with … a stock response. My letter first

Dear Mr Day,
I am writing to express my concerns about the campaign materials featuring Dan, a young man with Aspergers Syndrome. I know from your reply to my colleague Harry Williams that you feel justified in using Dan’s words and drawings to illustrate his difficulties. But in so doing you are reinforcing stereotypical attitudes to autism that are damaging in the extreme.

Dan has learned to see his autism as a monster that consumed him and caused him to behave in unacceptable ways. It is his fault he reacts badly to people who bully and tease him. It is the autism to blame for him being sent away to school. The staff taught him to correct the error of his ways and thanks to them he is a better person.

This may be how Dan sees the situation but the TV ad suggests that this is how Action For Children see it as well. And this is the message that is going out to the general public. Autism makes children behave badly. It is a monster that is taking our children. Action for Children will help your child to trample its autism under foot and become a better person. That is the message that autistic adults and the parents of autistic children are taking from your advert and we reject it utterly.

When I visited your website I was perturbed to read “”Today Headlands – as it is now known – is a very special place. It is a residential and day school for children with emotional and behavioural difficulties, like autism.” I have been a teacher in special education for 25 years. I can assure you that children with emotional and behavioural difficulties and autistic children are different. The former have had damaging life experiences that cause their problems. The latter are born with a neurological difference that affects the way they process information.

Then I went to “Meet Dan.”

Slide 2 reveals very low self esteem.
“I was loud and obnoxious and generally bad tempered”

Slide 3 describes his fear.
“I was just afraid of what was out there, afraid one day that I’d leave my parents and not be able to survive or anything like that.”

Slide 4 has more self loathing
“I wasn’t a great brother or son.”

Slide 5 The transition to Headlands was not well managed.
“I felt hurt. I felt betrayed by being left there.”

Slide 6 Dan was really miserable.
“I thought no-one really cared. I sat alone in my room alone and just … I was really upset.”

Slide 7 The misery continues
“after a few months, a year of being there I got a bit steadier.” A year?!

Slide 8 Things get better when Dan learns that his problems are his lack of respect and his lack of honesty.
“People have said that Dan you are a lot more respectful, you have been  a lot more honest and people have given me their trust.”

Slide 9 Dan expresses his gratitude to his carers and teacher.

Slide 10 Dan expresses his new found confidence, describes his skills and his sense of peace.

For all I know you have done a great job with Dan. You have taught him that because he is autistic he sees the world differently from the neurotypical majority; that their lack of understanding is the root of his problems. But by understanding himself and learning to make allowances for their lack of understanding he can avoid unnecessary confrontations. You have boosted his self esteem by identifying his strengths and giving him success. This gives him a secure base from which to tackle the real problems that he has and also gives him confidence to face the future.

But the evidence of your campaign suggests that you have taken a desperately unhappy, fearful child and taught him that all his problems were internal to himself and that it is up to him to change. Compliance brings its own reward. This may not be your intention, but it is what many of us in the autism community are taking from your campaign.

I note that you have invited people to express their concerns by complaining to the Advertising Standards Authority. I have no interest in seeing a dodgy advert pulled if the attitudes that inform that campaign and, presumably, inform the practise of Action for Children in relation to the care and education of autistic children, continue unchanged. I would much prefer to contibute to a dialogue that contributes to a better understanding of the needs of autistic people.

I am, as previously mentioned, a special needs teacher of 25  years experience. I teach in an all age school for pupils with severe learning difficulties. For 23 years I have parented a son with Aspergers syndrom. I am active in the National Autistic Society. I write and speak on autism and maintain a blog, Action for Autism, which is accessible via my sig file below.

Their stock response

January 29th, 2009 Posted by Mike | Autism rights, autism advocacy, campaigns, ethics | 13 comments

Action for Children or action against autistic children?

Action For Children is a charity with a long history of advocating for the rights of the child. Formerly known as NCH and before that the National Children’s Home, It began as a children’s home set up by a methodist minister, Thomas Stephenson, in 1869. Its continuing connection with the Methodist Church is embodied in its Articles of Association.

Action for Children is inspired by and works closely with the Methodist Church to improve the quality of life of the most vulnerable children and young people and continues the work of the former unincorporated charity, NCH (previously National Children’s Home). Action for Children’s stated purpose is “to help the children who need it the most” and is rooted firmly in the tradition of John Wesley who said that we should go not only to those who need us but to those who need us most.

Its purpose is

To help the most vulnerable children and young people break through injustice, deprivation and inequality, so they can achieve their full potential.

A recent press release on knife crime sums up its approach to disaffected youth.

We need to remember that they are more often victims rather than perpetrators of this type of crime.  We must stop demonising and start involving them in this debate, especially the most vulnerable youngsters who are often the ones most affected but whose voices often go unheard.

So why does its latest TV ad about Aspergers Syndrome get it so wrong?This is Dan’s Story. The sound quality is not great, so apologies for any errors in transcription.

I used to lash out if something pushed my buttons or I wasn’t able to do something. Things that wound me up were if they’d insulted me I would physically hurt that young person. My parents sought out help with my autism because it was becoming a pain in the bum. I went to an Action for Children school. I started feeling a bit more friendlier with other people. Thanks to the carers I was able to correct a lot of errors in my behaviour and become a better person. Well I feel a lot more confident thanks to them. I feel at peace with myself.

In the short video that accompanies this commentary autistic Dan is a monster rampaging through city streets that are covered in grafitti, a wild beast. But as he becomes entwined with the logo of Action for Children the real Dan, a vulnerable child, emerges into a green field with trees and is able to trample the beast into the ground.

There is also a cartoon sequence on the website which invites us to “meet Dan.” This repeats the monster imagery with the little boy alone and scared inside who gradually emerges thanks to the kindness of those around him.

All this is in stark contrast to the message coming from the NAS Think Differently and I Exist campaigns. Their message is that autism need not be so bad if we can raise awareness and understanding and provide the right supports. Autistic people deserve to live in a world where people do not push their buttons or insult them. They should not be afraid, as Dan was at the onset of adolescence, that he would not be able to survive without his parents.

I have very real objections to Action for Children’s treatment of autism in this ad campaign.

In all their other work they quite rightly see troubled children as victims of poverty, abuse, neglect and discrimination. They provide services for young adults because one of their slogans is “For as long as it takes.” They do not sign a person off at 18 or 21 if the damage has not been repaired.

But with autistic children they seem to think that it is the autism that is solely responsible for the child’s behaviour and ignore the injustice and abuse that compound the natural difficulties that an autistic child might face even in the best of worlds. All the problems are located within the child and they are all ascribed to the autism monster.

The angry child and the frightened child are the same person. The anger and the fear are united in the experience of the autistic child. The anger is born of fear and the cure for anger is to take away the fear. But in Dan’s story we are shown a frightened boy inside an autism monster and the cure is to take away the monster of autism and trample it into the ground.

Disturbing as this campaign is, I am even more disturbed by thought that, if this is how Action for Children think about autism, what is the impact of this way of thinking on the way they respond to autistic children in their care?

January 23rd, 2009 Posted by Mike | autism acceptance, campaigns, ethics | 42 comments

Ethics and autism

The recent media debate about the ethical questions that would have to be dealt with if a reliable pre-natal test for autism became available was notable for one reason. It acknowledged that there was an ethical dimension.

In part this rests on our changing perceptions of autism as more autistic voices are heard in the media. There is still a long way to go. As far as I know, no autistic persons’ views were heard during the broadcast debates. One parent from the Autism Hub, Sharon from the Voyage took part in a radio discussion and  made an outstanding contribution by comparison to the experts on the panel. And the Guardian did publish an excellent piece on its website by Anya Ustaszewski. I do not know if this made it into the print edition. It deserved to.

This is a short piece because I am in the midst of annual reviews where I sit down with parents and discuss their child’s progress and what we can do to improve their prospects for the future. I love these meetings. They are a chance to celebrate my pupils’ achievements and consider the wishes of both the parents and their children who all make some contribution to the meeting. Pre-natal testing will not be on the agenda.

January 21st, 2009 Posted by Mike | ethics, genetic testing, journalism | 6 comments

the other side of antenatal testing.

I think it is unlikely that we will see a genetic test for autism any time soon. It may never happen. Autism is a complex condition. We have not identified reliable biomedical markers for diagnosis. We do not know which genes, in which combination are necessary to cause autism. Nor do we understand how environmental factors influence gene expression. Genetic variations that are beneficial in one environment may be detrimental in another.

The Sickle Cell mutation is probably the most striking example. Sickle Cell Disease is painful, unpleasant and can be a killer. It is caused by a genetic mutation that alters the shape of red blood cells. Carriers have a single allele for the mutation. If two carriers reproduce there is a 25% probability that their child will be affected. But there is a 50% probability that the child will be a carrier like themselves. If only one partner is a carrier the child will not be affected. But it has a 25% probability of being a carrier.

This is important because carriers are resistant to malaria. In other words, if you live in a region where malaria is common the sickle cell trait has survival value that outweighs the negative impact of the disease. That is why Sickle Cell Disease remains common in parts of Africa but is declining in African American populations where there is no advantage in possessing the mutation. Of course the long term solution is to eradicate malaria and use genetic counselling to hasten the demise of the sickle cell mutation. But this example does go to show that the gene/environment relationship can be more complicated than we think.

The gene/environment relationship in autism is further complicated because we know that autistic traits can be beneficial and attempting to screen them out of the population may deprive us of valuable human qualities. Genetic testing often leads to abortion so there is a personal cost a swell as a more general human cost to consider when taking this path.

I have always considered that abortion should be a “a woman’s right to choose,” the slogan we campaigned under whenever attempts were made to restict the UK law on abortion. We were clear that that included the right to choose NOT to have an abortion as well, even if medical tests suggested that the baby would be born with a severe disability or disease. I have always assumed that for those very rare conditions in which the child will experience a short and painful life before dying in infancy, abortion is for the best.

But today I read an account in the Guardian by Victoria Lambert, who did undergo antenatal testing and discovered that her child to be had a serious genetic disorder, Patau’s syndrome, in which the child rarely survives for more than a few days after birth. Nine years later, she still regrets her decision to have an abortion. Indeed, reading the article, it is not clear whether or not she made the decision. Everyone around her, her  family, her doctors seemed to assume that abortion was the only option.

It sounds naive but what nobody told me, then or later, was that not everybody terminates such a pregnancy. I could have gone on and carried the baby to full term. The baby might even have survived for years - albeit with a serious and life-limiting set of disabilities.

It may be that if with proper counseling she would have still decided on termination. But she would have been much better equipped to deal with her feelings afterwards. There is a charity that she spoke to later, Antenatal Results and Choices which does provide non-directive advice to parents involved in antenatal testing.

Victoria is not just concerned with her own pain. She refers to recent reports about a new and safer test for Downs Syndrome that were universally approving because unlike existing tests there was very little likelihood that a normal child would spontaneously abort. The implication being that it is not just acceptable, but desirable for parents to terminate children who are judged imperfect so long as normal children are not harmed in the process. She quotes Dr Lisa Bridle, a disability ethicist and the parent of a Downs child.

“Testing is presented as not only benign and unproblematic, but also as fulfilling responsible pregnant behaviour. Alongside this construction of prenatal testing as ‘beneficial medical advance’, disability continues to be constructed in wholly negative and prejudicial ways.”

Bridle has said: “There is an implicit message within the goals of prenatal testing that society believes that raising a child with disability is such a grave burden that it is both morally correct and medically appropriate to take expensive measures to ensure that such children are not born.

“Testing is frequently presented as a compassionate enterprise, assisting families to avoid the birth of a child with disability. Early testing is sought to avoid the difficulties of late terminations. However, earlier testing and multiple, periodic forms of testing also emphasise the importance of detecting all affected pregnancies and further entrench a consensus that the rational response to a positive prenatal diagnosis is termination.”

There was a time when perfection was an ideal to which we all aspired even though we knew it to be unobtainable. In the culture of Christian Europe we were all imperfect in the eyes of God and relied on the Saving Grace of our Lord, Jesus Christ. There was a cultural shift in the 19th Century when self improvement and perfectibility in this life were seen as desirable norms. For good or ill the process described above by Dr Lisa Bridle is a result of that 19th centure cultural shift. At the beginning of the 21st century advances in genetics present us with the prospect of implementing the Victorian dream. But as Victoria Lambert concludes this new power has serious potential drawbacks and should be used with caution.

Bigger and better antenatal testing may thrill research scientists and may be of enormous importance to those parents who are very clear in their minds about the family they want to bring into the world. But for some of us, there is a grave danger that their very ease and simplicity make life-and-death decisions too easy to take - and to regret.

November 2nd, 2008 Posted by Mike | ethics, genetic research | 12 comments

A real conflict of interest.

Just as the supposed connection between thiomersal and autism has been replaced by Green Our Vaccines sloganizing about all the toxins in vaccines, so the specific reference to autism has been diluted with reference to other neurologiciacal and psychological disorders.  I often read that one in six US children has some sort of mental health or neurological problem and it is often blamed on toxins in vaccines and in the wider environment. The largest single group are those who are supposed to have ADHD, with 2.4 million  children in the USA  on medication it accounts for 5 per cent. Depression accounts for another 5 per cent; Obsessive Compulsive Disorder between 1 and 3 per cent; Autistic Spectrum 1 per cent. A more recent addition is Bipolar disorder which moved up the scale from 20,000 diagnoses in 1994 to 800,000 or 1 per cent of US Americans under 20 by 2003.

I am sure that there is a lot of double counting here. Nearly half of all children with bipolar have another diagnosis, usually ADHD. Lots of kids with autism have depression or OCD. Children with Tourettes often have ADHD or OCD.  Nevertheless there are a lot of children being diagnosed wth various neurological and psychiatric disorders and for many the treatment of choice is some form of medication.

But for Mark Geier, David Kirby and Brad Handley the broader picture is clear. Never mind the 1 in 150 with autism. They are just the tip of an iceberg. We are looking at 50 million potentially brain damaged US Americans. Something has to be done.

I think that we in the neurodiversity movement have been rightly skeptical of these figures. We understand how the prevalence for autism has been driven up by broadening the criteria, developing better screening and diagnostic tools, increasing awareness and even improving provision. “Build it and they will come come.”

Although there are problems with the abuse of medications with autistic people the big problem for many in the medical profession and for parents has been that there is no autism pill. The search for a pharmacological solution has seduced some autism researchers and led to some famous dead-ends. Frustrated parents have turned instead to alternative practitioners offering the biomedical solutions that I have criticized from the inception of this blog.

Broadly speaking autism numbers have grown in line with our understanding of autism. We have moved from a narrowly defined disorder to a spectrum. We have struggled within that spectrum to strike a balance between the concept of discrete categories of disorder and the dimensional approach which suggests that some of the differences exhibited by autistic people may be welcome additions to the diversity of human wiring. Nevertheless, developments within autism research and the debates they generate tend to take us forward.

But I detect a different process at work with those other categories and dimensions of disorder and well-being. There may not be an autism pill but there is a pill for ADHD, for OCD, for depression etc. Sometimes there are competing pills and off label pills seeking a new niche and a sales opportunity. What if the same pharmaceutical interests that the biomedical autism community revile for there role in obfuscating the question of an autism epidemic in the face of an obvious crisis for the mental health of our children [1 in 6 ferchrissakes!]  actually generated that broader crisis in order to boost drug sales?

Now, let me say that I fully support the idea of children as autonomous learners, active agents in their own development. We now recognize the inner life of the child and recognize that when things go wrong and children experience crises in their emotional and psychological development they are entitled to help and understanding. But  1 in 10 ten year old US American boys on medication for ADHD? Something is clearly wrong.

A recent report in the New York Times exposes a real conflict of interest and shows how easily scientists, convinced of their own correctness can seriously compromise, not only their own credibility, but that of colleagues working ethically in the same field.

It may just be a coincidence, but those leading the drive to diagnose and treat bipolar disorder in children are also the recipients of large and undisclosed stipends from the pharmaceutical companies that prescribe the drugs used to treat those children. The key word here is undisclosed.

Doctor Joseph Biederman,

A world-renowned Harvard child psychiatrist whose work has helped fuel an explosion in the use of powerful antipsychotic medicines in children earned at least $1.6 million in consulting fees from drug makers from 2000 to 2007 but for years did not report much of this income to university officials, according to information given Congressional investigators.

By failing to report income, the psychiatrist, Dr. Joseph Biederman, and a colleague in the psychiatry department at Harvard Medical School, Dr. Timothy E. Wilens, may have violated federal and university research rules designed to police potential conflicts of interest, according to Senator Charles E. Grassley, Republican of Iowa. Some of their research is financed by government grants.

Like Dr. Biederman, Dr. Wilens belatedly reported earning at least $1.6 million from 2000 to 2007, and another Harvard colleague, Dr. Thomas Spencer, reported earning at least $1 million after being pressed by Mr. Grassley’s investigators. But even these amended disclosures may understate the researchers’ outside income because some entries contradict payment information from drug makers, Mr. Grassley found.

It is important to remember that the failure to disclose these payments does not automatically negate the work these men have done in the field of bipolar disorder in childhood. But if their financial relationship to the pharmaceutical companies had been known in advance I am sure that their work would have been subject to much more rigorous scrutiny. I hope that it is subject to such scrutiny now and not summarily dismissed.

We in the autism community have seen what arrogance can do when a talented individual like Wakefield becomes so convinced of the correctness of his own position that he disregards the normal  conventions of science in the hope that history will vindicate him. But personal conviction can lead to self delusion without the necessary corrective of an honest accounting to your peers. And when we are talking about six figure sums from “Big Pharma” honest accounting takes on a whole new meaning.

June 8th, 2008 Posted by Mike | ethics, mental health, psychiatry, science | 4 comments

Conflict of Interest - censoring the autism debate?

Conflict of Interest [COI] in scientific and medical research about autism is often misunderstood amongst members of the autism community and beyond. For a start there are many potential conflicts of interest. Most people think of financial COIs. If I am paid by a drug company will my research be biased in their favour? If I have patented a vaccine am I going to defend the entire vaccination programme? If I am being paid as an expert witness am I going to tailor my evidence to satisfy my paymasters?

But what if I am also a parent? Am I motivated by hope of financial security for my child to select research that supports my case in court? Do I have a deeper, psychological need to absolve myself of any guilt for my child’s condition? Bettleheim still casts a long shadow. Am I too emotionally involved to be objective?  And then there are autistic individuals engaged in autism research like Michelle Dawson and Larry Arnold. Where does their COI lie? Do we sometimes use conflict of interest to mean that you conflict with my interest?

And, as Larry argued both in his blog and in the comments on my earlier post on COIs, there are conflicts that arise because we all are individuals with a personal and cultual history and that history helps to shape the assumptions we bring to any subject.

The New McCarthyism? 

Here is an extract from Richard Horton’s book, MMR Science and Fiction in which he cites Ken Rothman:

Rothman not only questioned the importance of conflicts of interest, but also challenged the policy that many scientists and editors were then and now espousing - namely, disclosure as a measure to ameliorate the conflicts that will inevitably exist in all research.

Rothman claimed that the label of ‘conflict of interest’ was little more than a thinly disguised accusation of dishonesty. The idea that there was anyone in science - or in any walk of life, for that matter - who could obtain a position of pefect objectivity was obviously wrong. Everybody, in one way or another, approaches a subject with a prior point of view. By focusing solely on financial conflicts of interest, the self appointed guardians of science, (he means people like myself, the editors of journals) were undermining a long held principle that work should be judged only on its merits. ‘By emphasizing credentials,’ Rothman wrote, ‘these policies [of disclosure] foster an ad hominem aproach to evaluating science.’ [p70]

For some people, if you declare a COI you are automatically tainted and everything you have to say is deemed worthless. But that is silly. Anyone who declares a COI is not saying “I am not to be trusted.” Just the opposite in fact. You are being completely honest. Hiding a COI is more likely to make people question your honesty.

There was a study last year into the relationship between RhIg exposure in pregnant women and autism. According to a report in Medpage Today

The study was supported by a grant from Johnson and Johnson Company and ongoing autism research support from the Leda J. Sears Trust. Neither funding source was involved in the design and conduct of the study, collection, management, analysis or interpretation of the data, preparation, review, or approval of the manuscript. Author conflicts of interest were not listed.

Johnson and Johnson are heavily involved in the manufacture of products that use RhIg. A cynic might argue that even though J & J had no direct influence on this study, the authors could have been tempted by the hope of future funding to come up with a result that pleased their patron.  I would argue the exact opposite. If everybody knows that J & J are funding your study and your results exonerate J & J’s product, you are going to make sure that everything stands up to scrutiny. It is only when you fail to list the connection that people get suspicious. 

That is the whole point. So-called COIs are inevitable in modern science. There would be very little research done without financial backing from industry. And what is the point of paying for lies? People talk about “big pharma” as if it were a single entity. This entity is made up of competing corporations. Even if J & J could buy a piece of research that exonerated their product, how long would it be before a rival corporation found a scientist to expose the flaws?

This brings us back to Rothman’s argument that all science should be judged on its merits and not on the supposed merits of its authors.  Most of us are not equipped to judge. Even within science the degree of specialization is so great that there may be very few scientists who can judge a piece of research on its merits. Professor Simon Baron-Cohen cites the case of Richard Borcherds in his book, The Essential Difference.  Borcherds was awarded the Fields Medal

for his work on a topic so obscure that most mathematicians working in his former Cambridge University department are unable to understand what he is doing. His mathematical brilliance is unquestioned by fellow mathematicians even if they cannot follow the specifics of his ideas. [p155]

Hence the importance of peer review, another much misunderstood concept. Publication after peer review does not automatically confirm the truth or falsehood of a piece of research or a theory. It tells us that a piece of work conforms to acceptable standards of scientific research and is taken seriously by fellow scientists who may go on to confirm or refute its findings in further studies.  

 When Rothman wrote Conflict of Interest, the New McCarthyism in Science? he had no way of knowing that 15 years later the aptly named Jenny McCarthy would be shouting down a respected pediatrician on national television while her supporters attempted to trash his reputation in the blogosphere. This is becoming a hallmark of the autism/vaccine camp’s response when legitimate science challenges their beliefs. They automatically seek to discredit the researcher rather than engage with him or her in a discussion of the research.

Over on LB/RB Joseph has written about a recent manifestation of this worrying trend. Dr Paul Offit has become a hate figure because he speaks up in favour of vaccination and is a patent holder for the Rotateq vaccine that he helped to develop. Anti-vaccine groups assume that everything he says about vaccine safety is a lie because he is defending his own financial interest.

Again this is astounding in its silliness. Even if doctors were only in it for the money you  make money from developing a safe vaccine. You lose money if your vaccine is unsafe. Even a hint of danger will get a vaccine pulled. Rotashield was a vaccine against the Rotavirus. It was very effective but may have led to an increase in the risk of intussusception. The risk was of the order of 1 or 2 cases per 10000. This was quickly picked up and the vaccine was withdrawn. Rotateq was developed by Dr Offit to replace it. It does not carry an increased risk of intussusception and both he and the Children’s Hospital of Philadelphia, where he is head of infectious diseases have benefitted from the royalties on this drug. Where is the harm in that? Anyone who reads Offit’s biography of Mauurice Hilleman, Vaccinated cannot fail to appreciate that both men’s commitment to vaccination is enirely honourable and motivated by a desire to alleviate human suffering.

Expert Witnesses

Dr. Fombonne’s actions have not historically been in the best interest of families with autism—he has declared himself an expert witness on behalf of various pharmaceutical companies in thimerosal-related litigation.

So says Safe Minds. There are two sides - parents and drug companies. Fombonne has made his choice and like Offit should be disqualified from further comment because of his “conflict of interest.” This is either an outstanding example of stupidity or it is rank duplicity. I suspect the latter. There is a world of difference between the experts who have a track record in their chosen discipline and are well qualified to offer expert testimony and those who make a career out of offering their services as expert witnesses without necessarily having the necessary level of expertise to be taken seriously. Mark Geier and Boyd Haley are a case in point. Fombonne and other experts like him are employed as expert witnesses because they already have a sound background in the relevant disciplines. They are not playing catch-up on the science in order to beef up their prospects of employment as expert witnesses. 

From McCarthy to McScience

One of the chapters in Horton’s book is entitled The Dawn of McScience. He argues that COIs can have a negative impact. When big money tries to  dictate the scientific agenda the result is often junk science. Horton cites the dispute between researcher Nancy Olivieri and drug company Apotex over the efficacy of deferiprone, a treatment for thalassaemia. Horton’s sympathies are clearly with the researcher. A more even handed view is presented by Julian Savulescu, Uehiro chair in practical ethics at Oxford University. Both seem to agree on the need for ethical oversight of the outcome of research, alongside the traditional ethical oversight of research proposals. The latter is designed to protect research subjects. The former would give a role to ethics committees in resolving disputes over the results of research, especially when those disputes pertain to patient welfare.

This could be made to work. It might overcome cynicism about big science and big money. It might even help to stem the tide of really junk science that is used to justify so much of the so-called complementary and alternative therapies out there.

In the meantime, if we are to call a halt to the McCarthyite use of COIs to bully and harrass scientific critics of the vaccine-autism connection, it seems only fair to me to hold its advocates to the exact same standards of honesty about potential COIs that they claim to uphold.

May 25th, 2008 Posted by Mike | Autism, ethics, science | 10 comments

Conspiracies, conflicts of interest and the bigger picture.

CONSPIRACY

Remember the outrageous subpoena against Kathleen Seidel that was recently quashed? Clifford Shoemaker, the author of the subpoena was ordered to show cause,

“why he should not be sanctioned under Fed R Civ P 11 – see Fed R Civ P 45(a)(2)(B) which requires that a deposition subpoena be issued from the court in which the deposition is to occur and Fed R Civ P 45 (c)(1) commanding counsel to avoid burdensome subpoenas. A failure to appear will result in notification of Mr Shoemaker’s conduct to the Presiding Judge in the Eastern District of Virginia.”

His reply is basically that “a mere mother and housewife” could not possibly have written Neurodiversity.com on her own. She must have been prompted by malice and given material aid by the drug companies to pursue a campaign of intimidation against Clifford Shoemaker, his clients and his pet witness, Mark Geier.  It is alleged that Kathleen is part of a conspiracy to protect the drug companies from the legitimate claims of parents of vaccine damaged children. As Kathleen says in her latest entry, Welcome to My Conspiracy

These documents offer a remarkable exposition of the grandiose, cartoonish conspiracy fantasies entertained by advocates of the concept of autism as toxicity and tort, and the arguments of those who seek to justify the perversion of legal processes in order to oppress their critics.

CONFLICT OF INTEREST

Imagine if a piece of research exonerating vaccines was put forward by a drug company employee whose husband was working for the defense team at the vaccine court. The parents who claim that their autistic children are vaccine damaged would  quite rightly be appalled if such a potential conflict of interest was concealed. This weekend three pieces of research were presented at the International Meeting for Autism Research (IMFAR) in London. All were co-authored by Dr Hewitson, all seek to demonstrate a link between vaccines and autism and the science has already been severely critiqued by Orac.

But there is more. Over on LeftBrain/RightBrain Kev has revealed that Dr Hewitson has her own potential conflicts of interest.

1. She and her husband have an autistic child and are pursuing a claim for vaccine injury.
2. Her husband is employed by one of her co-authors, Andrew Wakefield at Thoughtful House.
3. She is affiliated to Defeat Autism Now.

This does not necessarily invalidate her work. But one wonders why Dan Olmsted, who is singing her praises over on The Age of Autism, neglected to include these details in his piece. Did he know? Did IMFAR know when they accepted her presentations? Of course it could just be another part of Kathleen Seidel’s conspiracy against anti-vaccine campaigners.

THE BIGGER PICTURE

It is important to scrutinize the claims of DANites, anti-vaxxers and their friends in the media. But in the wider world of autism there are more serious questions to engage with that pertain to the mainstream research and medical communities who exercise so much more influence over the world of autism than those on the pseudo-scientific fringe.

Is it right to refer to autistic people and “healthy” controls in a scientific presentation? How far are we justified in questioning the assumptions and methodology behind a lot of autism research? Under what circumstances, if any, is the medical model capable of yielding useful results? Who is paying attention to the ethical dimensions surrounding informed consent from autistic research subjects?

Larry Arnold, an autistic person  who is also an autism researcher and a member of the board of trustees of the National Autistic Society raises these and similar questions in his initial reflections on IMFAR. After the tiresome but necessary task, so ably done by Kev, Orac and Kathleen, of dealing with some of autism’s stinkers it is good to be able to turn to an autism thinker like Larry.

May 19th, 2008 Posted by Mike | Autism rights, ethics, science, vaccines | 16 comments

Judge Rotenberg Center - action at last?

This comment was  posted to an old blog post of mine about the Judge Rotenberg Center.

I have a 25 year old son with severe autism, he is non verbal and is self abusive, self injury, aggressive, he’s 6′1″ too. I’d rather DIE than ever put my son into the JRC!! you need behavior modifaction! no punishments! now my son is doing much better I forgot to tell you those really bad behaviors had happened more when he was 15 yrs old, altho they still come up. I love my son with all my heart and I hate the fact he’s in a group home now. I live in R.I. I wish I could take him home forever. Thanks for reading.

If you read this press report you will understand the strength of her feeling. A prank phone call fooled the staff into administering a series of electric shocks to two unfortunate inmates for alleged misdemeanours committed earlier in the evening. This week the Boston Globe published a follow-up story. 

Rotenberg records reportedly are seized

By Patricia Wen
Globe Staff
May 15, 2008

State Police seized documents late last week from the offices of the Judge Rotenberg Educational Center in Canton that are related to a prank phone call last summer that led two students to wrongfully receive dozens of punishing electrical shocks, according to two people with direct knowledge of the investigation

My immediate response is “Wrongfully?” So under what circumstances should students “rightfully” receive electric shocks? My second thought is that, even if one were to accept the premise that contingent electric shock is an effective and acceptable method of behaviour modification, what sort of staff would sanction this to take place hours after the alleged infractions, and on the basis of a phone call? The original report in the Boston Globe tells us.

Six staff members worked the overnight shift at the group home at 66 Kevin Clancy Way, a tan house located in a quiet cul-de-sac in Stoughton. Five of the six had already worked a double or triple shift, while the sixth worker showed up at 10 p.m. None had much experience caring for emotionally disturbed boys at the group home. Most had been on the job less than three months.

Inexperienced, overworked staff, that’s who. But why should they comply with such a bizarre request? Again the original Boston Globe report is invaluable.

The staff was “apprehensive” and confused about the caller and discussed what to do, but they went ahead with the punishments because they were told by the caller that they would be “evaluated” if they did not obey, the report said. The caller, who made a series of calls between 2 and 4:45 a.m., had detailed knowledge of the inside of the house and led the staff to believe that he was watching them on surveillance screens at the central office.

Inexperienced, overworked staff who were only following orders and were fearful of the consequences if they did not obey.  Hmm. This is abusive and bullying on so many levels. The latest report updates us on a grand jury investigation

led by the office of Attorney General Martha Coakley, said Kenneth Mollins, a New York lawyer who has filed several lawsuits against the school and who said he spoke to a representative of Coakley’s office about the Rotenberg investigation. Mollins said he was told the grand jury is also examining possible financial improprieties by the school.

Ah yes, follow the money. JRC has around 250 inmates at $250,000 a year. They are plainly not spending it on quality staff. So where does the money go?

Ernest Corrigan, a spokesman for the school, did not confirm that a seizure of documents had occurred last week. He said only that school officials have been cooperative with state and local police ever since they reported the prank phone call to police last summer.

“We’ve been supportive of the investigation,” he said.

As a mark of their “cooperation” they destroyed the surveillance tapes of last years abuse even after being told by investigating officials to preserve them. For too long the JRC has got away with the abuse of autistic and other vulnerable young people. It remains to be seen if they will get away with abuse of the legal process.

May 17th, 2008 Posted by Mike | Autism, Judge Rotenberg Center, ethics | 4 comments