Action For Autism

The present crisis and the National Autistic Society

This blog is an infomercial for my favourite autism charity - The National Autistic Society.

The present financial crisis is already affecting the voluntary sector. Charities are  suffering as the recession affects people’s ability to give. In the UK at least 20 charities have lost an estimated £125 million in reserves that were placed on deposit in high interest accounts with the Icelandic banks that crashed last week.

There are some really tragic stories like a children’s hospice that lost £5 million. Some charities have lost all their reserves and may go out of business. Local authorities may have fared even worse - they had over £1 billion invested in Iceland. This money is lost. And, unless the government steps in the only way for local authorities to recoup their losses will be to raise taxes and cut services. This, of course, will impact upon the most vulnerable people in society who depend upon council services. Charities who would normally step in to fill the gap are already operating on reduced budgets.

I think the government should intervene. This week they announced a £500 billion rescue package for the banks. Another billion to help the real victims of the recession does not seem out of place. But a change in the tax laws could make things even worse for charities. The irony is that it is a measure that was introduced earlier this year to close a loophole that was being exploited by the banks and finance houses, of all people! They were employing tens of thousands of staff on rolling, temporary contracts in order to evade payment of hundreds of millions of pounds in national insurance contributions to the Treasury. The government response was to introduce a charge on the banks of 17.5% on the salaries of temporary staff. But many charities operate with a tiny full time staff and employ temporary staff to deliver projects. They too will be liable to what is effectively a payroll tax of 17.5%. Coming on top of everything else this will be enough to force some charities to close down.

The National Autistic Society

The National Autistic Society is OK for now. We have a prudent level of reserves that are securely invested and most of our staff are on contract. But our future income faces downward pressures. Local authorities who buy into NAS services will probably be operating on reduced budgets and people who donate money to support things like our helpline and training for parents of newly diagnosed children will also be feeling the pinch.

Whatever happens to the economy, we are not expecting to see a recession in autism. Millions will continue to visit the NAS website. Tens of thousands will continue to ring the help line. Thousands more will use the information and advocacy services, attend the Help! meetings etc. And hundreds of adults and children will benefit from the direct provision of a range of services by the NAS such as schools, residential homes, day centres and supported employment schemes.

Simply the best

I believe that the NAS is the best national autism organization in the world today. We provide a wealth of services. We are actively encouraging autistic people to take a leading role with seven diagnosed autistic people elected to the Council and one elected to the Board of Trustees. Parents like myself remain in the majority but we have just elected our first sibling councillor as well.

Honesty

The current campaign, that began with Make Schools Make Sense and continues with I Exist, combines honesty about the problems that autism can bring with a positive attitude towards autistic people and their ability to make a difference in their own lives if we can give them a fair chance.

The latest stage of the campaign is darker and focuses on what happens all too often when autistic people and their families are not given a fair chance. Bullying, isolation and despair are the triad of consequences if people are not given a fair chance. So building the paid up membership and stepping up our fundraising is very important right now. We want to make a difference and we need your help.

Join Us!

Anyone can join the NAS. We have national and international membership; individual and organizational membership; family membership and concessions for autistic people, students and the unemployed.

Donate!

Anyone can give money to the NAS. If you are a UK taxpayer remember to tick the the box for giftaid.

Volunteer!

Not everybody has money. But we all have time and skills. Consider donating your time or your expertise to the NAS. We need volunteers for things like our help line and our parent to parent scheme (training provided). We need skills that can make a difference at local level -  expertise in fundraising, accountancy, advocacy, publicity, etc. One branch might need a web site designer. Another wants a befriender. Contact the national office if you want to help.

Thank You!

This has been an infomercial on behalf of, but not authorized by, the National Autistic Society.

October 12th, 2008 Posted by Mike | National Autistic Society, Uncategorized, autism acceptance, autism parents, parents | 5 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

The case of Ben Haslam

Channel 4 News carried a worrying story on Monday, 14 July. While I would not go as far as my good friend Kev in describing it as evidence of fascism, it does raise serious questions about parental rights and the use of the law to decide issues of child welfare. The story concerns an autistic boy, Ben Haslam, who was making good progress at The Shires. I say “was” advisedly because Bedfordshire County Council, who were funding his 52 week a year placement, were due to cease payment at the end of the week. This was the result of a high court ruling which upheld Bedfordshire’s appeal against the decision by a Special Educational Needs and DISability Tribunal, aka SENDIST, that had upheld a previous appeal by Ben’s parents against Bedfordshire’s refusal to fund Ben’s place at The Shires.

From the news report it is obvious that Ben, who has severe learning difficulties and no spoken language has benefitted from his residential school placement. He used to constantly demand food and was clinically obese. He was incontinent. He was violent. He was self injuring and very unhappy. After 5 months at The Shires he has lost weight, is almost toilet trained and is a lot happier. As his mother says,

“It’s a pleasure to have him around. It really is a pleasure”

But happiness has a price. In Ben’s case it was £250,000 in annual school fees. This was too much for Bedfordshire who argued that they could meet Ben’s needs for less than half the price, £120,000 to be precise. It was not clear from the report whether or not they had included his need to be happy in their calculations.

Ben’s parents clearly do care about Ben’s happiness. It cost them £43,000, their life savings, to gather the evidence to support their case and hire expert legal representation to win their appeal. Now, after losing in the High Court, they face additional  bills for costs, including those of the local authority, of around £20,000.

Bedfordshire propose to educate Ben in a local authority special school and house him in a local children’s care home. Neither the school nor the care home are autism specific. If we consider Ben’s problems prior to going to The Shires, his previous local authority special school, which is now closed, did not exactly cover itself in glory. This is no disrespect to local authority special schools. I teach in one. But I remember two pupils with whom we struggled, who went on to make excellent progress at residential schools. I can think of others I have taught who would have benefitted from the 24 hour curriculum that specialist, residential schools can offer. There is no way that you can replicate 52 week total provision by talking a child into care and bussing them to a local authority special school for 40 weeks a year.

Bedfordshire claim that Ben’s case, like every other, is

“considered individually and according to a child’s specific needs.”

If true this marks a dramatic change from their position of 3 years ago when Bedfordshire were the subject of criticism from government because they were writing generic statements of educational need and leaving it up to schools to decide on provision instead of specifying what provision to make. In the view of the government minister, if this were general policy, Bedfordshire

“will not be complying with its statutory duty and determining the special educational provision in other cases, perhaps the majority of cases.”

So have Bedfordshire put their house in order? Can the Haslams place Ben in local authority care with any degree of confidence? It might help if Bedfordshire agreed to waive costs and remove at least one financial burden from Ben’s family. After all they did tell Channel 4 News that the relevant section of the law (section 20 of the Children’s Act)

“promotes partnership in meeting a child’s needs.” 

It strikes me that this is a very strange partnership if it is based on adversarial law and the parents are left making all the concessions and picking up the  bill for both sides of the legal proceedings. and the Haslam’s are not a unique case. The BBC disability forum, OUCH!, provoked some interesting comments on Ben’s case.

Take this from a Bedfordshire employee who knows Ben.

I work within Children with Disabilities in Bedfordshire, and have previously worked with Ben. To see the change in him is incredible, and shows that residential schools do offer the best facilities for children with severe autism as they provide a high level of care, knowledge, structure and consistency.

Or this:

Bosscat, you are absolutely right there is no effective provision for severe autism in Bedfordshire. Local provision is based on resources and not the needs of the children and for far too long Bedfordshire has been getting away with funding the cheapest option, which generally means inadequate and substandard provision for our most vulnerable of children. Children with severe autism need access to specialist support for their severe and complex needs; they need extended support beyond the school day, more than this authority can reasonably give.

Or this from a parent in Bedfordshire:

The day-school system is failing children with severe autism in Bedfordshire and lack of resources within the county means that many severely disabled children are being denied access to programmes, treatments and therapies that could significantly improve their quality of life - Ben’s transformation is an example of what can be achieved.

I am one of many parents who have no confidence or trust in Beds children Services. In Ben’s case (and countless others) they have demonstrated a complete lack of understanding and empathy, their sole purpose is to cause misery and despair for those children and their families who are made vulnerable by severe disability and an uncaring authority. It is my sincere hope that those officers responsible for this appalling situation are sacked or at the very least not employed by the new unitary authority that comes into effect next year, anyone who supports them is not fit to hold public office.

The £250,000 cost of care at The Shires School is an average figure when compared with other independent residential special schools offering the same level of support and care. This begs the question of how Bedfordshire can provide the same level of support and care for £120,000? The simple and short answer is that it can’t. It doesn’t help to open the local paper and see that the local authority is spending thousands of pounds on hiring conference rooms, is this really what public service is about?

Apart from the inadequacy of the provision, Ben’s case raises important questions of law. As the Haslam family barrister, John Friel makes clear,

“Either we have  a voluntary system or we impose it. If you impose it one would normally go through family court proceedings. So, as this is the first situation in which this has arisen … I think this is objectionable, both morally and politically.”

John Friel’s point is that children are usually taken into care either because the parents are failing their child or because they voluntarily opt for local authority care as being in the best interest of their child. In this case the Haslams are clearly not bad parents. And they are not being offered a choice. They are being coerced into placing Ben into care. The Family Court has not decided that Ben would be better off in care. In fact the Family Court has not even been involved. According to Bedfordshire, the SENDIST tribunal upheld the Haslam’s appeal “on a technicality.” So, presumably, the High Court overturned the SENDIST decision on a similar “technicality.”  This whole case has been  decided, not with reference to Ben’s best interests, but with reference to arcane interpretations of the workings of English case law.

I agree with John Friel. This is morally and politically objectionable.

EDIT:

I have just carried out a brief edit to remove some garbled code that came with the cut and paste comments from the BBC website and made it look as if I am a Bedfordshire parent. I am not. But my experience in Cumbria and that of many other parents I have met in the course of my NAS activities suggests that Bedfordshire is not the only authority that tries to shoehorn children into existing resources rather than tailoring resources to meet individual needs.

I am familiar with the argument that council budgets are already under a lot of pressure and they have to make best use of resources. But wasting resources on inadequate provision and pretending it is in the best interests of the child is both a false economy and a falsehood perpetrated on families who struggle with disability and the taxpayers who have to foot the bill.

And, as Kristina has noted in her blog on this subject, parents in the USA face similar conflicts. Sharon has blogged this as well and Madeline provides an interesting link to a story by Sarah Spiller, the reporter in the Ben Haslam story. She is an autism parent herself and had to battle through the courts to get proper provision for her child. And so it goes on.

July 20th, 2008 Posted by Mike | Autism, autism parents, education, government, parents, politics | 4 comments

A real boy and real facts about autism

Sunday’s Observer featured one parent’s account of the joy and the difficulty that comes with raising a severely autistic child. “Our struggle to understand David’s secret autistic world”  Christopher Stevens and his wife, Nicola have also written a book about their son, A Real Boy, which received this endorsement from NAS president, Jane Asher,

This wonderfully honest book tells us a great deal, not only about autism, but also about the extraordinary tolerance and unselfishness that is born out of unequivocal love. At the same time, it reveals some uncomfortable truths about the struggle it takes to access the rights of those with disabilities in our so-called civilized society.

Today I want to leave aside the family’s personal story in order to respond to Christopher Stevens’ argument that

1. Prior to 1944 autism was virtually unknown.
2. Autism was still very rare when he was born in 1964. But it has spread rapidly since then.
3. The most rapid growth has been in those severely affected, like his son. 
4. Autism is so distinctive that it is unfeasible to suggest that it was somehow missed by everybody before Kanner. Kanner noticed something new.
5. Autism is a twentieth century phenomenon that has grown to epidemic proportions in the 21st century.

HISTORY

Stevens seems unaware of a long history of autism that fills the void between Victor and Kanner when he writes:

Children like David were almost unheard of before Kanner. There’s one account, from Napoleonic France, of a boy found living wild in woods near Toulouse. Like our son, he treated people as tools. When he wanted to ride in a wheelbarrow, he would grab his doctor by the wrist, drag him across the garden, press his fingers around the handles and then climb into the barrow. And there’s a brilliant, beautiful report from 1869 by Mark Twain – he describes a piano recital in San Francisco by Blind Tom, an apparently autistic savant who could barely talk, yet who could imitate any sound, learn three melodies simultaneously and reproduce duets note for note at a single hearing.

Perhaps he is not aware of the paper by Shattock and Waltz who found evidence for autistic disorder in 19th century London based on “case histories from the notes of Dr. William Howship Dickinson at Great Ormond Street Hospital for Children.” Darrold Treffert has also paid tribute to Langdon Downs for  identifying autistic children in 1887.

Autistic Disorder, while not named such until 1943, has existed for the same long time as other forms of developmental disorder and mental retardation. It is not a new disorder. In his writings in 1887 Dr. J. Langdon Down did not separate out autistic Disorder from mental retardation, but there was group of patients sufficiently different from his ‘congenital’ and ‘accidental’ forms of mental retardation that he felt compelled to set us a new category-’developmental’ — to describe a group of patients “impossible to include” in his two other categories of mental retardation. As he describes some of the traits and behaviors of some of these persons — “world of their own,” talking in the “third person,” being in a “dreamland,”"echolalia,”"self-contained and self-absorbed,” “automatic and rhythmical movements,” a countenance and “repose of brightness and intelligence,” lack of “physical features” of retardation, “no response in words,” and indeed elements of savant syndrome itself in this special group of persons — those point in the direction of what is now called autistic disorder as being the appropriate classification for some of these individuals whom Dr. Down had classified as mentally retarded. 

Stevens also suggests that Kanner coined the term “autistic,”  when he writes that:

The idea that one in 100 British children is affected by a mental disability that was almost unknown a generation ago is shocking and many people try to fend it off. ‘Isn’t this all down to better diagnosis?’ they suggest. If they could see my son, blind to danger and deaf to our pleas, they’d realise it wouldn’t take Sigmund Freud to spot there was something odd about this boy. Freud wouldn’t have said David was autistic, though – he was dead by the time the word was coined in the early 1940s.

In fact the term was coined by Eugen Bleuler, in 1910 when writing about Schizophrenic negativism.

“… schizophrenics who have no more contact with the outside world live in a world of their own. They have encased themselves with their desires and wishes [...]; they have cut themselves off as much as possible from any contact with the external world. This detachment from reality with the relative and absolute predominance of the inner life, we term autism,”

Bleuler was a contemporary of Freud. Together with Jung they had founded the journal Jahrbuch für psychoanalytische und psychopathologische Forschungen in 1908. Bleuler also gave us “schizophrenia” to describe the condition then known as dementia praecox. He did not believe it was a dementia. Nor did he believe that it was necessarily a disorder of childhood. The irony is that following Kanner’s discovery of “autism” the confusion about the relationship of autism to schizophrenia persisted at least until 1979 when the prestigious Journal of Autism and Childhood Schizophrenia changed its name to The Journal of Autism and Developmental Disorders.

I find it significant that Kanner, publishing in the USA in 1943, and Asperger, publishing in Austria in 1944, independently presented very similar case studies that described their subjects as autistic. Is this really because autism suddenly emerged from nowhere in the middle of the last century? Or was something else happening here?

We have the evidence that autism was identified in the 19th century by Langdon Down, who called it developmental mental retardation. Bleuler coined the term autism in 1910. (It is interesting to note that while Asperger acknowledged Bleuler in his writings Kanner never did, even though he must have been familiar with Bleuler’s work.) 

Edit: This is not true. Thank you to Raj for this reference where Kanner does discuss Bleuler’s use of the word, “autism.” 

Why the long wait until autism as a developmental disorder of childhood entered the literature?

The twentieth century was also remarkable for another phenomenon. Institutional care, or incarceration, depending on your reading of history, of people with mental health problems grew massively in the first half of the century and then went into an even more dramatic decline. In Unstrange Minds Grinker reports that

Most of these institutions were less than thirty years old, but by 1904, 2 in every thousand Americans lived in one. By mid-century, more than 500,000 Americans lived in mental institutions, more than 3 in every 1,000. [page 37]

Today there are only 2 in 10000 Americans occupying long term mental health care beds. It is not too  fanciful to suggest that many of those Americans in the past probably had an autistic spectrum disorder. The UK experience mirrors that of the USA. In 1999, after a significant downsizing of long term hospitals in favour of care in the community, the NAS published research that showed a 2.4% prevalence of confirmed autistic spectrum disorder amongst inmates of secure psychiatric hospitals. The proportion was probably much higher in the past when institutional care was the norm.

Kanner stressed the professional status and educational attainments of the parents in his case studies. Asperger made similar observations. This is hardly surprising. Given the limited availability and the expense of social care at that time, only wealthy, educated people would be in a position to seek out an eminent child psychiatrist like Kanner rather than place their child in a state institution.

The remarkable thing is not that Kanner was seeing so many autistic children where none had existed before, but that he had the insight to grasp the common feature that united these apparently diverse individuals. Just as Down had viewed similar children through the paradigm of his time as developmentaly retarded, by the mid 1940s the time was right for an exceptional mind like Kanner’s to bring new insight to the questions these children raised.

EPIDEMIOLOGY

There are more difficulties when Stevens tackles the thorny issue of epidemiology.

Autism has spread so rapidly during my lifetime that many people are sceptical about the scale of the problem. In 1964, the year I was born, the Society for Autistic Children (now the National Autistic Society) issued an appeal through the Guardian : research suggested that there should be 5,000 people with autism in a British population of 50 million… and it could only find 2,000. Ten years later, it still hadn’t found the full 5,000.

This is a delightful story but it actually undermines Stevens’ argument. If it was so hard to find these very distinctive children 40 years ago are we supposed to believe that they did not exist; that there were actually less than one in 50,000 autistic children between 1964 and 1974? But never mind what research suggested in 1964. In 1966 Lotter carried out definitive research with the first ever epidemiological study of autism (in the English county of Middlesex). Using narrowly defined diagnostic criteria based on Kanner’s case studies, Lotter recorded a prevalence of 4.5 in 10,000. In my opinion, David Stevens would probably have met those criteria, based solely on Christopher Stevens written accounts of his son.

Lotter’s research showed that there should have been 22,500 people like David in 1964, not 5,000. And the NAS, who were probably best equipped to find autistic people, could not find a fraction of them, even after ten years of searching. I can believe that. Autism is not that obvious if you do not know what you are looking for. And it is easily misdiagnosed if you are looking for something else.

In Cumbria, where I teach, there were no known cases of autism in the entire county in 1983. Yet I can think of at least 5 children in the special school where I taught in 1983, who would have met the criteria if they had been tested. The NAS has a new campaign about autistic  adults called I exist. It reports that in Cumbria the number of autistic adults known to the authorities increased by 60% between 2003 and 2006. It is reasonable to expect that a lot of these adults would have been undiagnosed children back in 1983.

Stevens goes on to argue:

Today, the society estimates there are 525,000 people with autism. American figures suggest that, among the autistic population, the proportion of severely affected people, such as my son, is four times higher than it was 20 years ago. In other words, autism is spreading like an epidemic and the worst cases are multiplying even faster.

It is important to remember that those 525,000 people are not all like David. They are not the children that Lotter was finding in 1966. In 1978 Lorna Wing, a psychiatrist who was also the mother of an autistic child and a founding member of the NAS, along with a psychologist called Judith Gould, (who, 20 years later, was to diagnose my 12 year old son with Aspergers Syndrome) went looking for Lotter’s 22,500. If we are to be strictly accurate they actually went looking for the proportion of those 22,500 in special education in Camberwell in Middlesex and found them all. But for every Kanner autistic child they found there were another 3 who were clearly autistic but did not fit the precise criteria devised by Lotter. These other children all had what Wing and Gould described as “the triad of impairments.”

When Wing and Gould published their research in 1979 autism was not even included in the diagnostic manuals of the time. Kanner’s autism was included in 1980 (DSM III). Wing’s autism (the triad of impairments) had to wait until 1987 (DSM III revised).  In 1994 DSM IV finally included Aspergers Syndrome. Again, it was Wing who introduced this to the English speaking world.

CONCLUSION

1. Autistics like David have been recognized since Kanner’s seminal paper in 1944. Acording to Lotter in 1966 they number between 4 and 5 in 10,000. They were clearly around in Victorian times when they were seen as a subset of the mentally retarded and not as a distinct diagnostic entity.
2. In 1979 Wing and Gould confirmed Lotter’s finding and added another 16 in 10,000 who were clearly autistic but did not match the precise criteria used by Lotter.
3. Subsequently Wing expanded the autistic spectrum by incorporating high functioning individuals of the Asperger type. Along with less specific diagnostic categories like atypical autism and pervasive developmental disorder - not otherwise specified (PDD-NOS) this added to the numbers by another 80 in 10,000 to give us the current 1% with an autistic spectrum disorder.

So Stevens is mistaken when he argues that:

Better diagnosis is simply a side-effect of the autism epidemic: we recognise it more easily now, because there’s so much more of it about.

The four fold increase in severe autism that happened in the UK thirty years ago (not the USA twenty years ago as Stevens stated)  was the result of  redefining our ideas about the nature of autism. It is not better diagnosis. It is different diagnosis.

I am aware that this blog post may seem a disproportionate response to another parent who was just expressing a personal opinion in the course of a newspaper article. But the Observer is widely regarded as a quality national newspaper in the UK. The last time they published a feaure on autism it had to be withdrawn on legal advice on account of the inaccuracies and misrepresentations it contained. Nevertheless the most pernicious of these inaccuracies - that leading UK researchers had found that there were now one in 58 children with autism - continues to circulate on the internet as a statement of fact. I offer this as an explanation and not an apology for my reasons for taking another autism dad to task in such detail. Christopher Stevens has written an insightful and honest account of raising David that deserves wide circulation. But his misleading ideas about the history and epidemiology of autism deserve to be challenged in equal measure.

March 21st, 2008 Posted by Mike | Autism, Autism epidemiology, National Autistic Society, Uncategorized, autism parents, journalism | 24 comments

Jenny McCarthy: responding to criticism

First, an apology.

My offline existence has led me to neglect Action For Autism recently. This at a time when my blog has never been more popular. But I have no illusions about the reason. It is all down to Jenny McCarthy. I wrote a couple of short pieces about her and Google did the rest. As a result many parents who are favourably inclined towards biomedical interventions for autism have boosted my stats. And many of them have left critical comments that merit a reply. But not all of these are attached to the Jenny McCarthy posts. So I am trying to deal with them all in one blog post.

When reading the comments I noticed a number of common themes.  Liz summed up a lot of these themes in an insightful comment:

I agree that the DANs and their system is sorely lacking (understatement).
You say that a physician should act as a consultant to their patients and advise them on available options. That would be ideal, but very difficult to find such a person. In my experience, I haven’t found many physicians who actually do this. They barely get to know my child, don’t care to listen much to my concerns, and prescribe a one size fits all pharmaceutical drug for everything- not knowing to do anything else.
Unfortunately, there are lots of clowns out there practicing so called medicine. If conventional medicine had physicians who can do more than just Rx drugs, who knew about nutrition, who recognized signs of developmental delays, who analyzed each individual patient’s needs , were open to listen to parents, were competent, etc., perhaps so many parents wouldn’t be turning to alternative methods. Pharma has done some good, but lets not forget how much damage it’s also done. DAN has barely scratched the surface in catching up to the damage pharma has done.
Conventional medicine has no solutions and don’t seem to care to look for any. This is what makes parents go elsewhere.
The ironic thing here is that an actress (bimbo and not so famous), who doesn’t understand sponsored links, can use her mommy instincts and get her child to a place these PhD holders couldn’t!
(and so have many other unqualified parents)
What does that say for conventional medicine?
Shame on them!

There are four main ideas here.

1. Conventional doctors do not have any answers to autism beyond their prescription pad, which is not very effective.

2. Consequently they claim that there are no answers to autism.

3. Parents are not impressed by this and look elsewhere.

4. They find their own answers and their children make progress.

 These are very important points. When you get  diagnosis for your child you do not immediately google “Autism” and look up your nearest DAN doctor. You ask your regular physician about what happens next and for many people the answer is not satisfactory.

Michael Fitzpatrick is a doctor and also the parent of an autistic child. In his book, MMR and Autism: what parents need to know, he quotes from the Oxford Handbook of Clinical Specialities, a popular reference with British junior doctors.

“Autism:

This neurodevelopmenal disoder is, if severe, the antithesis of all that defines mental health.

Prevalence: up to 90/10,000 of those <16yrs old - estimates vary considerably. Sex ratio M/F = 3.

[...]

Treatment: this is not effective. Behaviour therapy may be tried. A good teacher is more helpful than a good doctor.

70% remain severely handicapped. 50% will develop usful speech. 20% will develop seizures in adolescence.  15% will lead an independent life.

Apply for benefits (disability allowance if in UK).”

Fitzpatrick goes on to write,

“Its summary of medical wisdom on autism conveys with brutal economy the simple facts that doctors do not know what causes autism and have no treatment for it. Furthermore, the prognosis is grim: apply for benefits.”

Our knowledge and understanding has moved on in the 10 years since this edition of the Oxford Handbook was published. Though I doubt that this has had a major impact on the medical profession. Autism remains a rare condition when compared to childhood complaints like asthma and eczema. It is also rare in comparison to psychiatric disorders in children. So there is little imperative on doctors to update their knowledge when there are other more pressing claims upon their time.

NO HOPE or FALSE HOPE?

Still, I am surprised and disheartened by parents commenting that their doctor told them there was “no hope” for their child. Do doctors really say this to parents? Or do they say something like ”there is no cure but …” by which time the parent has stopped listening, their distress on hearing the diagnosis compounded by their despair on hearing that there is no cure? Their hopes are dashed in the doctor’s office and they go away believing that nothing can be done. Only later, when they come across websites that proclaim that autism is treatable, do they regain their hope and become converts to the cause of biomedical intervention.

CAUSE and EFFECT

Defeat Autism Now makes all sorts of claims about the causes of autism. But they cannot point to any well designed scientific studies that demonstrate causation. Instead they rely on patient testimonials, or more accurately, the parents of patients testimonials. “Recovered” or “recovering” kids are displayed at conferences and video evidence is posted on the web. This is not scientific proof. It is advertising. I am not saying these kids have not improved. I see kids improve all the time in the school where I work. I saw my own son improve.  I am saying that, in the absence of properly controlled scientific studies, claims for particlar treatment protocols cannot be verified

Sometimes improvements are dramatic. Children seem indistinguishable from their peers, as well they might in a supportive environment where staff follow the advice of the Child and Adolescent Mental Health Services.

Psychological treatment programmes can help parents/carers in modifying children’s behaviour, enabling them to cope with specific difficulties and ensuring optimal schooling. Helpful advice to parents is that it is more effective to change the environment around the autistic child than to attempt to change the child.

This is helpful advice to schools as well. We do well to remember that autistic spectrum disorders are developmental disorders. These children are not frozen in time. They grow and develop, though not always in the ways we might expect. Creating an environment that plays to their strengths is likely to be more productive than constantly reminds them of their weaknesses. As I wrote elsewhere:

We all had a favourite subject at school that we were good at and something else we really struggled with. Imagine being told that you had to drop your best subject and have double lessons in your worst subject.That is not so far from the experience of lots of autistic children whose interests and talents are sidelined while we concentrate on their difficulties. This can send all the wrong messages to our kids. They learn about their limitations but rarely get the chance to achieve. So they put up barriers to protect what is left of their self esteem.

COMMONSENSE versus SCIENCE

There are still parents who will insist that they know the treatment worked. This happened with Secretin. Victoria Beck reported a dramatic improvement in her son’s autism after he was given Secretin to test pancreatic function. Secretin was enthusiastically espoused by DAN. The late Bernard Rimland claimed:

The use of secretin appears to be the most promising treatment yet discovered for the treatment of autism.

Rimland was so convinced that he and Beck secured the patent for using secretin to treat autism and sold it on for a reported $1 million USD to Repligen Corp. There was nothing wrong with this deal. They were paid in shares in Repligen which they made over to the Autism Research Institute. The CEO of Repligen had a double interest in Secretin. He was not just another businessman looking for a profit. He was also the parent of two autistic children. He wanted it to  work and he was ready to pay handsomely to make it work. Unfortunately his company’s research, rigourously conducted to satisfy the US regulatory bodies, “failed to meet the study’s dual primary endpoints.” That has not stopped other, less scrupulous individals from continuing to promote secretin and even homeopathic secretin as a cure for autism.

Chelation is another remedy favoured by DAN practitioners. But autistic kids do not like taking strange medicines by mouth or being strapped down for a slow intravenous infusion. So some enterprising doctors have formulated skin creams containing chelators like Transdermal DMSA. There are glowing testimonials for TD DMSA on the web. But DMSA is water soluble and so it is extremely unlikely that it could ever pass through the skin. Think about it. Our skin is a barrier that acts to keeps the water in. Without it we would dehydrate and die. It also keeps the water out. We do not absorb water like a sponge when we bathe or shower. So how does the DMSA pass through our skin? It does not. And so there is no way for it to have any effect on our bodies at all.

When people think something works, where there is no scientific reason for it to work, we call it the placebo effect. That does not mean they were conned or are trying to con the rest of us. Placebo affect means people get better because they think they will get better. You can call it faith healing or the power of positive thinking. It is a real effect and one of the reasons why the gold standard of medical research is the double blind study in which a control group is given a placebo and nobody, neither the researchers nor the patients, knows which is which until after they have evaluated the results. The experimental group must not only show benefit, they must also show a significant benefit over and above the group on the placebo.

But how does this explain improvements in autistic children who are given placebos? They may be completely oblivious to what is going on. First there is an important effect noted by researchers into regressive autism, the distressing condition where children develop normally and then lose previously acquired skills or fail to progress thereafter. From a previous blog.

Much of the evidence for regression comes from parental reports. And it is not always clear whether they are reporting regression or failure to meet expected milestones. It is also necessary to exercise caution when dealing with parental evidence. Aitken knows this. It is in the same study by Taylor et al.

“ A review of each record showed that in 13 children the history given by the parents had changed after the extensive publicity about MMR vaccine and autism. Before the publicity the parents often reported concerns early in their child’s life, usually before their first birthday; the current history for the same children recorded symptoms as developing only after MMR vaccination, in some cases shortly after.”
(Taylor, Miller, Lingam, Andrews, Simmons & Stowe 2002. page 395)

We reinvent our memories in the light of experience. Memory is not a transcript of history. It is a constantly changing attempt to interpret that history with the benefit of hindsight. So parental accounts may not be the most reliable evidence without external corroboration.

Secondly, children are very sensitive to the emotional state of their parents or other primary caregivers. You can get a vicious circle where totally stressed out parents unwittingly add to their child’s stress. The child then freaks, adding to their parent’s stress, et cetera, et cetera. Then someone offers the parents a way forward. They feel empowered. They are less stressed. They approach their child with a more positive outlook. They are consistent in their dealings with their child. The child senses all this and benefits from the change in his parents. We have placebo by proxy. The parents think the therapy changed their child when, in fact, it was their belief in the therapy that changed them and then their child changed in response to the change in themselves. The therapy did not cause the change directly. It was the catalyst for change.

JENNY and I.

Most parents are not au fait with the scientific method or the history of autism. And why should they be? They have been thrust into a difficult situation and may not be enjoying the best of support from professional agencies. This makes them vulnerable. They are looking for a way out of this mess. They turn on the TV and see Jenny McCarthy spreading her message of hope. Who would not be sold in those cicumstances? Then Google brings them here and they read me bad mouthing Jenny. Outrage!

Listen up. McCarthy is only spread all over the media because she previously spread herself all over the pages of Playboy. Why should the opinions on autism of a young and buxom, B list celeb and wannabe film star be more credible than those of an overweight, middle-aged guy like myself? Last year McCarthy was an indigo mother with a crystal child. Her kid was the next stage in evolution. Then he became some kind of toxic disaster zone and now he is cured. Oh, and it was the vaccines what done it! This from a woman who had her son circumcised because she wanted him to have a “pretty penis.” Excuse my cynicism, please.

YOU and I 

I have tried to address general criticisms of my position rather than go for a point by point rebuttal or engage in personal arguments. If anyone thinks that I have ducked their question or ignored their point of view, please feel free to repost it in the comments to this post and I promise to respond.

October 25th, 2007 Posted by Mike | DAN!, Quackery, autism parents, science, vaccines | 35 comments

Autism News Beat - A Round Up

NEW BLOGS FOR OLD

There is a new blog on the block. Autism News Beat opened with this.

“I’ve started this site as a resource for journalists looking for accurate, evidence-based information about autism. I plan to review and comment on print and electronic coverage of autism, and interview journalists, editors, and others to gain their perspectives on this much reported but little understood story.”

The second post seemed to recommend the evidence based intervention of ABA over stem cell therapy. In fact the evidence base for ABA is open to question as Michelle Dawson was quick to point out. Her blog, The Autism Crisis, is a useful source of well referenced criticisms of ABA. I suspect that Autism News Beat was probably so impressed by a news report which for once clearly rejected biomedical interventions, that they decided not to highlight the controversy surrounding  ABA. This is akin to backing Stephen Dawkins in an argument against  intelligent design while deciding not to mention his disagreements with fellow evolutionist, Stephen Jay Gould. Disputes within the evolutionary camp are of minor importance compared to the gulf that exists between us and the creationists. Similarly the differences that exist within autism science are clearly of a different order to the differences between autism science and autism woo. [Pace Ms Dawson. Despite the efforts of autism curebies to reduce it to the level of woo, behaviourism is science based.]

RDI

Another news story centres upon the death of an autistic child. Hakeem was not subjected to life threatening interventions to “cure” his autism. He was loved and accepted by  a mother who removed him to America to escape the ignorance about autism that leads people to regard it as a form of demonic possession in Senegal. Similar ignorance exists in parts of America, sometimes with tragic consequences.

Hakeem was not killed by quackery. His death appears to have been a natural tragedy. His mother was so impressed by the progress he had been making following a programme of relationship development intervention that she is returning to Senegal and mortgaging her home to set up a school based upon RDI principles to help autistic children there. I have some doubts about RDI. It comes across as evangelical and expensive. There are no independent studies to support it. But it is better than exorcism or stem cell therapy and I send good wishes to Hakeem’s mother, Sabelle Jelani and to her proposed school.

PC  VERSUS FC?

Another news story centres upon Ralph Savarese, who adopted an autistic child. They apparently made great progress using facilitated communication. The media interest surrounds his book on the subject. I have not read it yet. But I am  thinking that this is yet another approach that helps some individuals but is hyped up as a solution for all individuals and falls into the abyss when these impossible claims on its behalf are dismissed.

DISABILITY RIGHTS KNOWS NO BOUNDARIES.

Leaving autism aside, two other news reports caught my eye this week. One is about accepting people with Downs Syndrome  The early years of Downs Syndrome are reminiscnt of more recent attitudes to autism. In the year of my birth, 1952, the Guardian reports that parents of Downs children were told:

‘Not to worry, there are plenty of places for children like him.’ And she said, ‘In any case, they don’t live long.’”

Attitudes have changed, as the article makes clear.

“Or perhaps, as some of these stories may show, it could be because of a slow but growing understanding that a child born with Down’s syndrome today really does, perhaps for the first time, stand a chance of leading something remotely resembling a decent life.”

Downs Syndrome has not changed. But attitudes have. So Downs kids can now look forward to  decent life. As a consequence parents are no longer desperately seeking amniocentesis and therapeutic abortions in the numbers they once did. The level of Downs births is now constant. The level for positive outcomes is rising. Downs children are no longer routinely sterilized. Some of them may marry or have children.

DISABLED SEX LIVES!

I have seen severely disabled people in wheelchairs go potholing, abseiling and rock climbing. Usually this involves able bodied people and a lot of rope. There is no way they could do it on their own. Sometimes it is the same with sex. But helping a severely disabled person achieve sexual fulfillment involves a far more serious risk assessment than mountaineering. So full marks to Treloars College for tackling this and the Observer for a good job of reporting it. We have nuns arranging for a prostitute to visit a young man so he have sex before he dies, couples being assisted into position and them left alone, even marriage. And what about the possible offspring of these relationships?  If the love and care that facilitated their conception is transferred to their upbringing these will be lucky children.

October 8th, 2007 Posted by Mike | Autism, autism parents, politics, science | 17 comments

a real debate about curing autism.

A recent report in the Guardian provoked some furious responses in their  Comment is Free section. The story itself was a fairly innocuous account of another study by Simon Baron-Cohen in support of his theory that exposure to elevated levels of testosterone in  the womb carries a predisposition to autism. The furore came in response to the final paragraphs.

If it does turn out ultimately that testosterone is a causal factor in autism it may not be possible or even ethical to do anything to change it though. Previous studies suggest that the level is mostly down to the child’s genes. Researchers don’t know which environmental factors are important.

“There is a very live debate about whether autism should simply be recognised as an atypical pattern of development like left handedness which doesn’t necessarily need treatment,” said Prof Baron-Cohen, “It just needs to be recognised as different and maybe supported educationally but not cured or eradicated.”

This is my summary of the criticism generated by Simon Baron-Cohen’s statement.

The very idea! How dare anyone suggest that it is OK to be autistic? It may be OK for high functioning Asperger types and their parents. But what about those of us who struggle daily with severely autistic children who cannot speak, who tantrum and self injure, who cannot manage their basic physical needs without support  and are going to end up in life-long residential care?

And it seems a very reasonable criticism to make. If your child is miserable or angry and has little chance of living an independant life why shouldn’t you want to cure him? I know parents who are actively seeking a cure for their child, who also argue for more acceptance and understanding from society for autistic people. Some of these parents are very supportive of autistic adults who have made it plain that they do not want to be cured. When I questioned this, one told me that she respected ANON’s right to be accepted for who he was but her child could not make that choice. He was low functioning and non-verbal. She would love him to progress to ANON’s level and be able to choose for himself. Until then she was going to carry on looking for a cure.

Reading through the comments on the Guardian website one or two things struck me. Parents who were angry with Professor Baron-Cohen were at pains to emphasise the negative aspects of their children’s autism. mickeydolenz wrote

Would I like my 2 autistic boys to live independently of me in the future? Absolutely. Would I want them to have families of their own? Absolutely. Would I want them to not be continuously frustrated and angry at the world around them? Of course. I really can’t see the argument against curing.

Then purelymedicinal, responded, declaring herself as Mrs Mickey D, and saying that she did not believe in a cure for autism because it was genetic. Then, when mogrammy intervened to argue that autism was a biomedical illness and the answers were all in Bryan Jepson’s new book mickeydolenz retorted,

mogrammy - no, sorry - that’s twaddle. It is a neurological condition - and that’s not theory, it’s fact. It’s utterly repugnant that snake-oil merchants like the one you cite make their living from the vulnerable.

Someone else chimed in to defend the Gluten Free/Casein Free diet and recommend Luke Jackson’s book on the subject. Luke is autistic. He is a clear example that Asperger’s Syndrome is not a mild form of autism. it can be just as severe in its own right as any ASD. The diet does not help with his autism. It helps with his food intolerances. mickeydolenz replied to this as well.

I utterly love my autistic children to pieces and I am at turns fascinated and depressed by their behaviour, as well as piss myself laughing with them. But I am ever curious as to how their brain works and how to unlock their world.

I am glad that mickey can laugh with his kids and that they are not “continuously frustrated and angry at the world  around them,” as he argued at the start of the discussion. This is not a cheap shot at mickey. At the start of the discussion he was angry at the idea that autism could be a positive thing. By the end he was arguing against the idea that his children’s lives would be forever joyless unless he bought the snake oil.

After someone posted an alert on one of the egroups on Yahoo the discussion was swamped for a while by mercury fanatics. But mickey, his wife and others kept the discussion going. They were asking questions and interested in each others answers rather than hammering home a point of view. I learned a lot from reading this discussion.

It confirmed that there are not just two camps - the curebie fanatics and the neurodiverse - slugging it out with each other in the blogosphere. The question is more complex than that.

I would like to think that those of us who advocate for autism acceptance are equally open to argument and discussion. We are not fanatics or timeservers. We are people who live and laugh and love and want, not better children, but a better world for our children. (with apologies to Paul Foot)

September 15th, 2007 Posted by Mike | Autism, autism acceptance, autism advocacy, autism parents, ethics | 13 comments

New Scientist and the Autism Omnibus

New Scientist has published an interesting commentary on the Autism Omnibus  proceedings that are taking place in the United States Court of Federal Claims.  They are quite rightly sympathetic to the Cedillo family whose case is the first of around 4,800 that seek to establish whether or not thimerosal containing vaccines, MMR or a combination of the two can cause autism. There is no question that Michelle Cedillo is severely disabled. There is a very big question  over whether or not she is the victim of vaccine damage.

New Scientist is less sympathetic to some of those advising the parents and offering expert testimony on their behalf. They have identified a number of problems.

Lawyers representing the parents are acting on the assumption that their claims are statements of fact and that they are only having to go into court because of some kind of conspiracy between the US government and the vaccine manufacturers or ’big pharma’ in the parlance of the petitioners and their supporters. New Scientist again.

Those findings have not, however, stopped some lawyers from discussing the link as if it were already fact. The firm of Williams, Love, O’Leary, Craine and Powers, based in Portland, Oregon, is representing the Cedillo family. The company website states that “thousands of children” have developed autism “as a result of their exposure” to thimerosal.

One consequence of this mindset is that they are not approaching the court as an independent arbiter of two conflicting claims. Rather, they see the court as another obstacle in their fight for justice. Autism Diva has blogged about a very perceptive discussion of the trial on National Public Radio. One of the contributers, Gardiner  Harris, a reporter with the New York Times observed that:

It’s a little bizarre that way, because the lawyers for the claimants — so normally when you go into a court where a judge is making the decision …. there’s a podium right in front of the judges and the lawyers stand in front of the judges… in this case the claimants’ attorney turned the podium around and spoke to the audience instead of to the special masters who will actually make the decision and I think it tells a lot about this case.It’s not clear that it’s all about money or even about winning for the claimants. I think … they are talking to a different audience.

I think that Harris is onto something. Some of those who believe that these autistic children are vaccine damaged have convinced themselves that government, the courts and the scientific establishment are all in cahoots with the drug companies. The children are victims of an enormous conspiracy. They do not expect to win. And if their ‘experts’ are shown up for fools or charlatans, their humiliation will be seen as martyrdom and may even enhance their status amongst those parents for whom the vaccine question has become an article of faith.

It is easy to imagine how well meaning others can be so impressed by the parents’ sincerity that they are swept up by an emotional tsunami that destroys their critical faculties. It is also the case that more cynical observers are quick to step into the wreckage to exploit the suffering with snake oil remedies and dubious research.

The New Scientist cites the Geiers as a case in point. Regular readers of this blog will be familiar with the exploits of this family firm and the stirling efforts made by Kathleen Seidel to investigate and expose their dubious activities. It looks like the New Scientist reads her blog as well. It cites her by name. So now its readers know about their phoney IRB that they use to give ethical cover to experimenting on children with Lupron.

And here’s a novelty. When my son was recruited to a research programme into autism at University College in London it did not cost us a penny. They paid all our expenses. Parents who want to enrol their children for the Geier’s research have to pay! Thanks to the New Scientist for this.

He [Geier] adds that he charges parents $500 for an initial consultation, but does not invoice them after that and so makes “virtually nothing” from his work with the families.

So let’s get this straight. The parents pay him $500. They or their insurance companies pay for all the necessary blood tests, lab work and the highly expensive lupron injections. They even administer the drugs themselves. One parent has reported sitting on his daughter to restrain her while injecting her with the drug. Geier works from his home in Maryland, a well appointed dwelling with a pool and a tennis court and a home made laboratory. He has no academic affiliation, though his son and co-author did lie about his affiliation on one of their papers. George Washington University cried, ‘Foul!’ and the paper was withdrawn and republished in a corrected version. Geier publishes the results of his “research” in obscure journals to bolster his career as an expert witness.

Last time out he did not do so well. According to his biography on Wikipedia:

Dr. Geier’s views have been found to fall outside of the scientific consensus. In a 2006 case^[12] regarding an immunoglobulin containing thimerosal which was alleged to have caused autism, Dr. Geier’s testimony was found to fall below the Daubert standard, which essentially requires expert testimony on science to be scientifically sound and represent the general consensus. As Dr. Geier provided most of the plaintiffs’ evidence, the case was thus subject to summary judgment.

Amongst the criticisms in the judge’s decisions,^[13] Dr. Geier’s literature review was found to be insufficient in justifying his claims, his lack of qualification in pediatrics was highlighted and he was found to be a “professional witness in areas for which he has no training, expertise, and experience,” whose testimony was “intellectually dishonest,” “nothing more than an egregious example of blatant, result-oriented testimony.”

The Omnibus hearings are taking place in a federal court. I only hope that, when Geier takes the stand and testifies to his research methods, his disregard for his research subjects’ [children] right to protection and his encouragment of insurance fraud will bring the Feds down on him like a ton of bricks and he can enjoy his martyrdom for the cause from behind bars.

New Scientist also mentions Robert Nataf, a French chemist.

One potential check for mercury involves a urine test for porphyrins, molecules that occur naturally in the body and bind to metals. Interest in the test accelerated last year following the publication of a paper claiming that autistic children had higher porphyrin levels than normal (Toxicology and Applied Pharmacology, vol 214, p 99).

While the researchers state in the paper that they have no conflicts of interest, lead author Robert Nataf is the founder of Laboratoire Auguste Philippe, a Paris-based clinic that sells porphyrin tests. When discussing his research with parents Nataf has also stated that he has a paper “in press” at The Lancet Neurology. Editors at the journal say they have no record of a paper by him. When asked to comment, Nataf did not clarify the situation.

If they had asked me I could have clarified the situation. It is one and the same paper. Last year New Scientist published a story about this paper. They interviewed another of the authors, Richard Lathe. I wrote to New Scientist pointing out that Nataf was telling parents that the research was going to be published by the Lancet and asked for clarification. Instead of clarifying the situation they suggested I contacted Lathe and clarify it for myself. I did and Lathe told me that Nataf had been premature. He omitted to say that the paper had been submitted to Lancet Neurology and rejected. So they had hawked it around until they found a journal with low enough standards to publish it.

Another of the authors of this paper was Lorene Amet. Amet has an autistic son. She has explored a number of therapies for him the including the Son-Rise method and ABA. Eventually she became a DAN! practitioner and set up a clinic in Edinburgh selling biomedical treatments, including chelation, to parents who can buy their porphyrin tests off her fellow researcher, Robert Nataf.

New Scientist concludes:

While Nataf’s failure to disclose his commercial interests may have breached normal publication ethics, it is likely to mean little to the parents of autistic children. Email groups dedicated to discussing the condition are full of pleas for help from parents frightened by a disease that shuts off their children from the rest of the world. Under such circumstances, says Israel parents are desperate for a cure: “If you had autistic children, would you wait for published trials, or would you treat them?

Alan Israel is one of those who profits from the parents. According to New Scientist he owns a pharmacy that sells the chelating agent DMSA to parents, a snip at a $100 for a month’s supply, and ‘treatment’ can last for years. He relies upon parents fear of “a disease that shuts off their children from the rest of the world.”

Autism is neither a disease nor does it shut children off from the world. New Scientist has made a good stab at the autism vaccine controversy. But the erroneous characterization of autism with which the article concludes is exactly the sort of thing that encourages desperate parents to seek desperate measures.

June 23rd, 2007 Posted by Mike | Autism, MMR, Quackery in Autism, autism parents | 11 comments

Vaccines, Autism and Perception of Risk

This week’s New Scientist contains the first major discussion of the Autism Omnibus Proceedings that I have seen in the UK media. There are a few minor inaccuracies. For example the Omnibus is not just about thimerosal. There are three theories of general causation proposed by the Petitioners Steering Committee: thimerosal; MMR; thimerosal and MMR combined. And the case of Michelle Cedillo  with which the proceeedings have opened is based on the final hypothesis, that thimerosal containing vaccines administered in the first year of life damaged her immune system to such an extent that the MMR caused her to become autistic.

Leaving aside the particulars of  individual cases the New Scientist makes some important points. After outlining the preponderance of scientific opinion  against thimerosal as a causative factor in autism the New Scientist editorial goes on to say,

On the surface then, this looks like a battle between the reasoned arguments of experts and irrational parents. This is how health officials have interpreted vaccine disputes in the past, but in so doing they alienated the people they are meant to be advising.

In the UK, a similar debate kicked off in 1998, when scientist and doctor Andrew Wakefield cast doubt on the safety of the measles, mumps and rubella (MMR) vaccine. The response of the medical establishment was well intentioned but disastrous. Experts met behind closed doors and emerged to tell the public the vaccine was safe. Leaflets gave celebrity endorsements of MMR. Rather than examine Wakefield’s claims, which were shaky at the time and are now widely discredited, the government merely told parents not to be silly. Not surprisingly, parents did not buy it. Take-up of MMR fell from 92 to 82 per cent, close to the minimum level needed if isolated cases are to be prevented from developing into epidemics.

At the time of the MMR crisis I remember feeling patronized and my intelligence insulted by what seemed like another attempt to replace serious debate with a public relations spin job by the government and their officials. They made me want to believe Wakefield. And for a while I very nearly did. 

Let me be clear. I am not denying. that a small number of children do have adverse reactions to vaccines, sometimes with disasterous consequences. But prior to vaccines every child had adverse reactions to the diseases we vaccinate against and many of the outcomes were tragic. I speak as a survivor of measles, mumps and whooping cough. Today’s parents may be forgiven for failing to appreciate just how serious these diseases can be. The very success of the vaccine programme has led to complacency in this respect.

It has also contributed to the high level of risk aversion in the affluent societies of the world. In my grandparents time it was expected that some children would die. Around 100 years ago infant mortality rates in the USA and the UK were horrendous. One in ten children died before their first birthday. That would put the UK and the USA in the top ten for infant mortality today ahead of countries like Ethiopia and Sudan.

Vaccination rates have contributed to the steady decline in infant mortality. As it happens the current US figure of just under 7 children in a thousand for infant mortality is slighter higher than their rate for autism.

But parents do not consider statistical probabilities when making decisions about their child. When you sit in the doctor’s waiting room with a healthy 18 month old infant in your arms the chances of them dying in infancy are miniscule compared to the chance that they might develop autism. And if there were the tiniest doubt in your mind about the safety of childhood vaccines you would walk out of that waiting room.

In reality most parents have vaccinated their children with overwhelmingly positive outcomes. But for a minority of parents the doubt has been planted post hoc and some of them have thus been led into the logical fallacy of post hoc ergo propter hoc and blame the vaccines for causing their child’s autism.

The New Scientist suggests that the way to avoid this in the future is for scientists to be

open, and admitting what science does not know. It takes time and effort, but the alternative is that parents and health officials talk past each other.

I can see their point. For a long time science has been presented as the infallible source of truth, not by scientists but by opinion makers in politics and the media. A minority of scientists may have been seduced by this and others have challenged it. But I suspect that most have got on with the job, oblivious to the impact that reports of their work have on public opinion.

However, I am not convinced. Most people’s perceptions of science are not based on what scientists say, but on media reports of what they say. And the standards of science reporting in the popular media are frankly terrible.

This is caused by a mixture of ignorance and laziness that even affects magazines like New Scientist, for whom scientific ignorance should not be an issue. Yet too often they carry short reports based on pilot studies that are not yet ready for public consumption. These are then picked up by the non-scientific media and presented as “proof positive” when no such proof exists.

As an example of laziness, their main article on the Autism Omnibus proceedings contains a reference to mercury as “a known neurotoxin.” Amongst the anti-vaxers this carries the subtext, “They knowingly injected a neurotoxin into our children.” They did it on purpose, dammit!

Is there any circumstance in which New Scientist reporters would describe a substance as an unknown neuro-toxin? The phrase, known neurotoxin, is  code for a whole set of assumptions to which New Scientist certainly does not subscribe, but to which it gives unwitting approval by the careless use of language.

Overall, the New Scientist coverage is informed by support for the standards of scientific proof and rigorous criticism for those who fall short of those standards. At the same time it respects the sensibilities of those for whom autism and its causation is not primarily a discussion of scientific principle but a very personal and immediate issue. This discussion has focused primarily upon the issues raised by the New Scientist editorial. I hope to return to the substantive article tomorrow.

June 21st, 2007 Posted by Mike | Andrew Wakefield, Autism, MMR, autism parents, vaccines | 5 comments

Autism Omnibus - a disaster for the families

After 5 years of delays and legal wrangling the Autism Omnibus proceedings have finally begun. Arthur Allen has blogged about the trial and in one of his posts asks the question, Are they seriously trying to win this case?  This is a good question. There are nearly 5000 children involved in the Autism Omnibus proceedings whose parents claim that either

1. Thimerosal containing vaccines (TCVs),
2. MMR,
3. or a combination of the two

are responsible for their child’s autism. The omnibus amalgamates all their claims. The special masters presiding over the vaccine court will hear three test cases for each of these three potential causes. As I understand it they will decide whether these individual cases are the result of vaccine damage and award compensation accordingly. They will also decide whether the evidence in these cases supports the general theories of causation presented by expert witnesses for the claimants. If they do it will greatly ease the path of all the remaining claimants for compensation and probably bankrupt the vaccine manufacturers unless they are bailed out by the US government.

So you would expect the family selected to bat first for the claimants to represent their best shot, to be the most straightforward, indisputable case they had. You would also expect the expert witnesses in the case to be fully prepared and briefed for what is in effect a class action suit on behalf of nearly 5000 families.

Sadly, for the Cedillo family who stepped up to the mark for this historic hearing, this seems not to be the case. Left Brain/RightBrain and Autism Diva have written detailed discussions with extensive references to the transcripts of this opening case, which expose the weakness of the case presented by expert witnesses for Michelle Cedillo.

Michelle Cedillo’s is a tragic case. According to Arthur Allen

Michelle is very ill. In addition to her autism she suffers from inflammatory bowel disease, a seizure disorder and chronic eye inflammations that have left her 90 percent blind. She was pushed into the courtroom in a wheelchair because arthritis has left her unsteady on her feet, her mother testified.

But even if she wins, how can such an obviously sick child support a general theory of causation amongst autistic children who are not blind, suffering from IBS, siezures and crippled by arthritis? And it is a big if. The testimony of her expert witnesses is less than convincing. On the balance of evidence presented so far Michelle Cedillo could easily lose her case.

And what then for the family? Their daughter is seriously ill. Someone has persuaded them that her problems are vaccine related and that by pursuing this claim they will obtain the compensation that will guarantee their child’s future. The family have my complete sympathy. I do not blame the parents for believing their lawyers’ arguments and accepting the claims of these so-called experts. But if those lawyers and their expert witnesses are laughed out of court what will happen to the Cedillo family and all the other families relying on their case? Do the anti vax campaigners have their own Anti-Vaccine Injury Compensation Fund to help the families left high and dry in the wake of their failed agenda?

June 20th, 2007 Posted by Mike | Autism, MMR, autism parents, parents | 3 comments