Action For Autism

David Kirby on Autism in Scotland

Autism in Scotland

Scotland has a population of just over 5 million people. In 2004 The Scottish Executive published the Audit of Services for Autistic People Statistical Report. This was the result of a questionnaire sent out to all local authority/National Health Service partnerships. Two areas, Borders and Western Isles failed to respond and were excluded from the subsequent ananlysis of results. As a consequence the Audit deals with a total  population of approximately 4.9 million people.

The Audit found 3412 children and young people under 18 with a diagnosis of an autistic spectrum disorder. The Audit could only find 645 adults with a diagnosis of an autistic spectrum disorder. This finding has been taken as further proof of a putative autism epidemic by journalist David Kirby writing for The Age of Autism. Unfortunately for Kirby, he obviously has not read the report in question. Instead he offers

Many thanks to Clifford Miller for furnishing the Scottish audit data.

Miller also furnished this graph which Kirby faithfully reproduces.

A misleading source 

It looks like a figure taken from the Audit. But this figure is not in the PDF version that Miller links to. Nor is it in the word.doc that I have read. The clue is in those weasel words at the top of the figure, “Data Source.” Yes, Miller invented the figure based upon data gleaned from the audit. This would matter less if it was an accurate representation of the data source. But it is not. If we start at the bottom with “Average age of diagnosis of autism - approx three,” Average age of diagnosis is nowhere mentioned in the Audit. Furthermore, the Audit only contains data on people aged 3 years and older. So is Miller claiming that everyone in Scotland was diagnosed around their third birthday? How does he explain Howlin and Moore [1997] who found a mean age of 5.69 years for diagnosis in Scotland?

Miller’s second innovation is to give us four age groups: those born up to 1954, and those born in 15 year birth cohorts: 1955 - 1970, 1971 - 1986, 1987 - 2002. These are not the age groups in the data source. The Audit does not refer to date of birth. It refers to adults over 50, adults aged 25 to 49, adults aged 18 to 24 and children aged 3 to 18. As 18 is the legal age of majority in Scotland I am going to assume they mean “up to but not including 18″ when they refer to children. Of the birth dates you can derive from these ages: up to 1954, 1955 -1979, 1980 - 1986, 1987 - 2001, only the over 50s group matches. 

Miller is also dishonest when he compares adults to children in the same graph. Data for children is derived from the responses of 13 NHS boards. Only 10 NHS boards provided adult data. Those missing are

Ayrshire and Arran -  population  376,000

Forth Valley - population               300,000

Greater Glasgow - population    1,200,000.

So the figures for adults are based on a population of approximately 3 million rather 5 mllion. They exclude Glasgow, the most densely populated urban area in Scotland. None of this matters to Miller. He believes there is a world epidemic of autism in children, a pandemic that is caused by “vaccines.” He does not specify which vaccines, or which components or how they might be acting to cause his pandemic. He argues that if there is no pandemic there ought to be 500,000 autistic adults requiring 24/7 care in the UK. This is plain silly. Never mind that we are talking about a spectrum of need, where most autistic adults do not require 24/7 care. If Miller were right there ought to be 133,500 autistic children requiring 24/7 care in the UK. Some do require constant care but most clearly do not.

A tenfold error

So much for Kirby’s source. What does Kirby make of this material? It turns out that he makes a complete pig’s ear of it.

Let’s look at the numbers. There are approximately 34,000 young people with autism in Scotland, born during the 16 years from 1987-2002. That is an average of 2,125 cases per birth cohort. But among older people, born during the 31 years between 1955 and 1986, there are only about 600 reported cases, or just over 19 cases a year.

If the rate of autism in Scotland had remained unchanged between 1955 and today, then there are many, many uncounted adults going without support, services, or even much recognition.
In fact, at 2,125 cases on average per year, there should be 65,875 people with autism in Scotland between the ages of 22 and 53 years alone. But only 600 have signed up for any help at all, in a country with universal healthcare, no less.

Which begs a few questions: Where are the other 65,275 people in that age group with autism? Why have 109 out of every 110 adults with autism never sought, nor received, any special attention for their particular needs? Why have they not been counted? And why is there no national outrage over the neglect of so many thousands of fellow citizens going without services that they need?

In a country the size of Maine, with a population much smaller than New York City, it seems that the government would be able to locate and help these people.
Unless, of course, some of them are not there.

These figures are hogwash. Kirby may be able to use a calculator but he cannot read a graph. The figure is 3,400 not 34,000.  Incredibly this post has been up for over a week now and nobody seems to have spotted such an egregious error, neither managing editor Kim Stagliano, nor editor Dan Olmsted and certainly not Kirby himself. And none of his  supporters has posted a correction in the comments section, not even Barbara Fishkin who commented,

David

Thank you for this. Such piercing information. We won’t know what to do with our kids with autism as they age because THERE IS NO PRECEDENT. There never were kids afflicted like this before, in these numbers. We had better start preparing to make life work for our kids as they get older! Barbara

No there never were kids like this in these numbers before because these numbers are wrong! Over on Barbara’s website I read that:

Barbara Fischkin has taught students how to read and write journalism, creative nonfiction and fiction in the university classroom and for the country’s most respected writers’ organizations and institutes.  Her innovative method for teaching writing across the curriculum simulates the atmosphere of a newsroom and utilizes the techniques of the fiction writing workshop, while emphasizing the crucial difference between fact and fiction.

Hm … yes, that crucial difference between fact and fiction.

FOOTNOTE:

Kirby has published the same article on the Huffington Post. There are a few minor changes - a different title and no acknowledgements for Clifford Miller. I suppose that if you write for a rag like Age of Autism, sponsored by Generation Rescue linking to someone like Miller gives you credibility with the mercury malicia. But it is best to be more discreet if you want to be taken seriously as a journalist writing for a genuine internet newspaper. Oh and one other thing, if you want to be taken seriously it is best to take your readers seriously. Which may be why Kirby corrected the 34,000 figure in his HuffPo version below, but could not be bothered for his AoA readers.

Let’s look at the numbers. There are approximately 3,400 young people with autism in Scotland, born during the 16 years from 1987-2002. That is an average of 212 cases per birth cohort. But among older people, born during the 31 years between 1955 and 1986, there are only about 600 reported cases, or just over 19 cases a year. Click here to Download file

If the rate of autism in Scotland had remained unchanged between 1955 and today, then there are many, many uncounted adults going without support, services, or even much recognition.

In fact, at 212 cases on average per year, there should be nearly 6,600 people with autism in Scotland between the ages of 22 and 53 years alone. But only 600 have signed up for any help at all, in a country with universal healthcare, no less.

Which begs a few questions: Where are the other 6,000 people in that age group with autism? Why have 1 out of every 11 adults with autism never sought, nor received, any special attention for their particular needs? Why have they not been counted? And why is there no national outrage over the neglect of so many thousands of fellow citizens going without services that they need?

Taken at face value these are reasonable questions to ask. Whether it is reasonable to ask them of a data source compiled by civil servants from existing records is another matter. I will be much more interested in the questions and the answers that will arise from the recently announced Audit of Adults with Autism. Real data, fit for purpose is an all too rare occurrence in debates about autism.

May 11th, 2008 Posted by Mike | adults, autism epidemic, journalism, vaccines | 8 comments

Abubakar Tariq Nadama - justice denied

I have written in the past about the case of Abubakar Tariq Nadama here, here and here. In fact my first ever blog post in November 2005 began as an internal discussion document that I wrote for the National Autistic Society [NAS] following Abubakar’s death. It was subsequently published in Communication, the  magazine for members of the NAS and roundly condemned by advocates for biomedical interventions in autism. I republished it on Blogger and invited my critics to debate with me there. 145 posts and 1,746 comments later the debate continues.

This week I was shocked to learn that criminal charges against the doctor responsible for treating Abubakar, Roy Kerry MD, had been dropped because the defense had presented new evidence. Science Blogger Orac’s analysis concurred with my feelings that the confusion engendered by misleading statements from the CDC in response to the killing of Abubakar created enough potential for reaonable doubt for the defence attorneys to persuade the District Attorney to drop the case.

But what new evidence could contradict the undisputed facts of a case in which a child was chelated by a physician who had never chelated a child before using a chelation agent with a black box warning that specifically warned against using an IV push to administer the medication? Kerry used the IV push on Abubakar twice and sanctioned the third and ultimately fatal IV push that was administered by a junior employee while Kerry was absent from his clinic.
Just to remind readers.

Abubakar was 5 years old. He was a lively, healthy autistic child. His mother moved  with him to the USA to seek treatment for his autism. His father, a  doctor who specializes in respiratory diseases, remained in England. Abubakar was seen by Dr Anju Usman, a Defeat Autism Now practitioner, who referred him to Kerry because of persistently elevated levels of aluminium. Kerry used an off label medication to treat him and he died.This is the part that really confuses me.  

1. I have yet to see any persuasive scientific evidence about a connection between aluminium and autism.
2. Even if there were a connection between autism and aluminium there is no clinical indication that any formulation of EDTA, either Kerry’s drug of choice - Disodium EDTA [Endrate] or the allegedly “safe” alternative - Calcium Disodium EDTA [Versenate] has a therapeutic effect on aluminium levels.
3. So why did Usman refer Abubakar to Kerry and why did Kerry use Endrate to treat him, not for elevated levels of aluminium, but for lead poisoning? And this despite the fact that Kerry’s own lab tests showed that Abubakar did not have a problem with lead.

The basis for my questions  is public knowledge. You can read it in the Order to Show Cause issued against Kerry by the Pennsylvania State Board of Medicine. But you will not find any answers to those questions. I had hoped that a court case would provide answers.  The principle players, under oath, would have to tell the truth. So why is there no court case? I began by agreeing with Orac. The CDC flubbed it with their waffle about the wrong chelator, as if there had ever been a right chelator for autism.

But rereading the blogs  I came across this entry from Kristina Chew in which she provided a source for the Nadama family’s decision to sue Kerry, his medical practice and his medical supplier, Apothecure. As well as condemning Kerry and his clinic, the legal notice also indicts Apothecure for  providing misleading information about the Endrate they supplied to Kerry and accuses them of causing Abubakar’s death.

32. The inaccurate, unsound and dangerous information communicated by the ApothéCure Defendants to Dr. Kerry and Dr. Lewis as described in paragraph 30 was a direct and substantial cause in Dr. Kerry’s commission of the negligent acts described in paragraph 24 and 25. Therefore the ApothéCure Defendants are legally responsible for the conduct described in paragraph 24 and 25.

So is Kerry relying on the incompetence and negligence of his supplier to escape blame for his own incompetence and negligence in the case of Nabubakar Tariq Nadama? Are Pennsylvania going to pursue Apothecure through the courts? Perhaps they should consult with their opposite numbers in Oregon. It seems that Apothecure have a track record of incompetence and negligence in the manufacture and supply of drugs.

There is another possibility. Kerry’s attorney said

He said the defense was prepared to present expert witnesses who would testify the damage that occurred to Nadama’s heart, leading to a lack of oxygen to his brain and his death, was caused by something else, six to eight hours before the treatment at Kerry’s office.

Witnesses would have testified that the chemical used — disodium ethylene diamine tetraacetic acid — was appropriate, and there was nothing wrong with Kerry using an intravenous push instead of a slower I.V. drip to administer it.

So what made this child so sick in the hours before his final, fatal chelation episode at the hands of Kerry? And why was it not apparent and suficient to postpone the fatal IV push. And who are the bojos prepared to give expert testimony in contradiction of the recommendation of the FDA regarding IV push with EDTA? Do tell, soon, please.

Footnote:

This is the letter I wrote to the reporter who broke the story of Kerry’s escape.

Dear Brian
I have just read your report on the dropping of all charges against Roy Kerry in the case of Abubakar Tariq Nadama. I have blogged extensively on this case as has science blogger Orac, whose most recent post, http://scienceblogs.com/insolence/2008/05/no_justice_for_abubakar_tariq_nadama.php#more is in complete accord with my feelings on this matter. My amazement at the decision to drop all charges is only surpassed by my amazement at Kerry’s announcement that he wants to continue in medicine!
 
Kerry was a member of the American College for Advancement in Medicine.  He was listed as a member in 2006, a year after Abubakar’s death. http://www.acam.org/dr_search/index.php?q=Kerry&field=lname&submitted=1 A search today yielded no results. ACAM is an alternative therapy outfit that promotes chelation for heart disease using disodium EDTA aka Endrate because it binds to calcium. The theory is that if heart disease results in calcium plaques forming blockages the Endrate will remove the calcium and destroy the plaques. This is quackery pure and simple and has no basis in science.
 
Kerry gave Endrate to Abubakar three times in a concentrated IV push, ignoring the black box warnings on the label to only give in a slow dilute infusion. Abubakar showed no indication of any of the diseases for which Endrate is licenced. They used the push instead of the infusion because Abubakar was a lively 5 year old who could not be held still for three hours. 4 adults held him down for 5 minutes strapped to a papoose board for the IV push. By the third treatment his body was so depleted of calcium that his heart stopped. 
 
Although Kerry is no longer listed by ACAM he is on a list of Defeat Autism Now practitioners. http://www.autismwebsite.com/practitioners/us/Roy_Kerry,_M.D..htm DAN supports chelation as a treatment for autism. At the time of Abubakar’s death they made great play of the fact that they supported transdermal and oral chelation and not the IV chelation practised by Kerry. The following year he was admitted to their list after attending a one day conference for clinical training and agreeing to abide by their protocols. DAN’s treatment protocols also have no basis in evidence based medicine. And Kerry’s listing indicates that he will continue to offer IV chelation to autistic children. Will he switch from Endrate to Versenate, the formulation of EDTA that does not pull calcium out of young bodies? Will he use a slow infusion or will he revert to a rapid IV push on children forcibly restrained as in the case of Abubakar? Does DAN know or even care?
 
If another child should die it is not only Roy Kerry who should appear in the dock.

Mike Stanton

May 9th, 2008 Posted by Mike | Quackery in Autism, biomedical interventions, chelation | 2 comments

Is autism a disease?

 A QUESTION

Over on Orac’s blog, Respectful Insolence, The Integral asked an interesting question.

Orac, and anyone else, I need help…..I want to respond to someone who believes that autism is a “disease”………I don’t believe that at all. Are there medical blogs/entries/articles that offer “proof” (for lack of a better term) that autism is not a true disease, like HIV or syphillis or other things like that?

thanks………I wouldn’t know where to start looking.

The Integral

 SOME ANSWERS

Well, the president elect of the American Acadamy of Pediatrics, Doctor David Tayloe has stated on the Larry King Show that he regards autism as a disease.

KING: He might do a few things. What puzzles you the most, Dr. Tayloe, about autism?

TAYLOE: Autism is a disease that just doesn’t have an easily identify cause or therapy.

KING: You call it disease?

TAYLOE: Yes.

Doctor Grinker in Unstrange Minds wrote:

 “In the view of anthropologist Arthur Kleinman, a disease occurs when something is wrong with our bodily organs and systems, whereas an illness is the experience of unwanted or negative changes in our bodies or our ability to function in society. Autism is thus both a disease and an illness, and it cannot be otherwise.” [Unstrange Minds page 230]

Furthermore autism is included in the World Health Organization’s International Classification of Diseases. You will find it in Chapter V, Mental and Behavioural Disorders. Dig deeper and you find autism in block F80-F89 Disorders of Psychological Development. 

In the United States (and increasingly throughout the rest of the world) The Diagnostic and Statistical Manual of the American Psychiatric Association (DSM-IV-TR) offers an alternative system of classification that, like the ICD 10, also refers to autism as a disorder.

This all illustrates the folly of using quote mining to try and prove a point. Dr Tayloe is a pediatrician. He treats sick children. I imagine that he uses words like illness and disease as synonyms and has no reason to consider the technical differences between these two terms that Dr Grinker, the anthropologist describes. And it is very unlikely that either of them will have enjoyed the dubious pleasure of sitting on commitees that explore the nosological niceties involved in classifying and defining conditions and deciding whether they constitute a disease or a disorder or even a syndrome. (Asperger’s Disorder in DSM-IV-TR is Asperger’s Syndrome in ICD-10 for example.)

Joseph responded to The Integral and linked to his own blog post on the Emporor’s New Pathology. I particularly enjoyed his conclusion.

Calling something a pathology shouldn’t be a big deal. Does it matter to Halle Berry, for example, whether her diabetes is called a disease or not?

The short answer is that it is problematic when the so-called disease refers to your way of being. If it were no big deal, then shouldn’t the gay community be OK with homosexuality being called a pathology?  The reasons why it is a big deal should be self-evident: (1) It redirects efforts and resources into finding an often mythical “cure”, which many of the individuals with the condition do not want; (2) It discourages accomodation; (3) It provides a justification for discrimination; and (4) If the condition is an important part of someone’s way of being, calling the condition a disease is effectively the same as calling the individual a disease. This is the case whether we’re talking about a disability or a difference.

I would quibble with the last point. The individual may feel that. But this does not mean it is the intention of those who call autism a disease. I do agree with Joseph that:

It’s really not something there is a right answer for based on what is known. It’s probably more of a political question at the moment.

DISCUSSION

My old philosophy tutor warned us against ”weasel words” that often have to bear the weight of the user’s political and ideological baggage. That is why we have to be careful when ascribing significance to ”expert” opinions and  definitions. When challenged over whether autism is a disease, a disorder, a syndrome or even a difference our natural inclination is to follow The Integral in seeking out an authoritative source to justify the political burden that we attach to the concept. 

But that just mirrors our opponent, who has their own agenda and their own  equally authoritative sources. We have all been there, swapping PubMed abstracts in a vain attempt to trump the other person’s argument. It is better to challenge the other person to justify their argument.

Some examples:

• “What do you mean by disease?”

• “What do you mean when you characterize autism as a disease?”

• “By your definition is Down’s Syndrome a disease?”

• “Why is it important to you that autism is not a disease?”

• “What would it take to prove you wrong?”

In my experience the important thing in discussions like these is not to persuade the other person that they are wrong. Instead, if you believe that reason supports your case, the important thing is to persuade your opponent to think. It is also incumbent on you to think as well. We all come to these questions with a predisposition to favour one side or another. This may be a reasoned decision based on previous knowledge and understanding or it may be more visceral.

Some more examples:

• If it is wrong to eat mercury in a tuna sandwich how can it be right to inject it into babies?

• If autism is a disease of course we ought to try and cure it.

• Investigating the causes of autism is the same as wanting to get rid of all autistics.

• Saying I have a disease is like saying I am a disease.

Sometimes gut feelings turn out to be correct. After all instinct preceded intellect in the evolution of  life. But feelings should not be privileged over other forms of knowledge. Your strength of feeling is no more a measure of truth than your opponent’s equal and opposite feeling on the same subject. We often turn to science to settle these questions. But, as Joseph observed, how we characterize autism is as much a political question or [my preference] a philosophical question.

The problem with philosophy is that it is not science. The scientist uses tested procedures, equipment, measuring devices to produce data. And there are further statistical tools to analyze the data and point to conclusions. It is not perfect. Bias can interfere with the choice of subject, study design and the interpretation of results. Even so the bench work of the humblest scientist should yield results that are more objective than the discourse of the most eminent philosopher. And most of us engaging in these discussions are trained in neither science nor philosophy! 

A CONCLUSION

I think that whenever we use words like disease, cure, neurodiversity, acceptance around autism we should not be asking are they true. Instead we should ask if they are helpful. Do they take the discussion forward or do they erect barriers? It all depends on the context. In the case of anthropologists like Dr Grinker who are examining autism in the context of the cultural response to difference, it makes sense to think of autism as a disease entity and compare it to other disease entities. Are attitudes to autism within a given society concordant with attitudes to other diseases or to disease in general? Diseases like childhood cancers can attract sympathy and the local community will rally round an affected family. The same people may recoil from a child with AIDS. Where does autism fit in this scheme of things?

I do not think it is useful for medical doctors like Dr Tayloe to think of autism as a disease.  All their training leads them to seek cures for diseases, to normalize the abnormal. But if you think of autism as a different way of being the solution changes. Instead of trying to normalize the autistic person you are more concerned to optimize their development. And if that means accepting the parameters of their autism rather than seeking to eradicate them so be it. When I addressed a conference of health service professionals in London a few years ago I gave them this message.

It is often the case that, rather than trying to normalize their behaviour, we would do better to teach autistic people that their normality is different to ours. Then, instead of telling them to change all the time because we are right and they are wrong, we could teach them strategies to understand us and make allowances for our behaviour.

A Positive Role for Health Professionals
I think this view of autism could be quite attractive to psychologists and psychiatrists working in the health service. Instead of seeking to pathologize the behaviour of autistic people they would be freed to celebrate the positive aspects of autism and share this with parents who naturally want to love and value their child despite their difficulties. There is a lot of discussion about the need to mourn the loss of your ‘normal’ child and your hopes and expectations for him while you adjust to having an ‘abnormal child’ after diagnosis. It may be that what we really mourn is the lost opportunity for celebration. Autism appears to have taken this away from us and from our child. As Matthew once said to me,

“I’m sorry, Dad. I wish I could have been the boy you never had.”

Take the autistic child. Restore his self esteem and teach him to take pride in himself. Educate his parents in the best ways to raise him and teach them coping strategies for the challenges he will present. Counsel the brothers and sisters and teach them how to draw strength rather than weakness from their autistic sibling. You may not have a cure. But there are ample opportunities for you to heal.

April 27th, 2008 Posted by Mike | Autism, Neurodiversity, autism acceptance, politics, science | 31 comments

Petition the UK Government for Autism

Barbara Wilson, the National Autistic Society Regional Councillor for the South West has had a petition to the Prime Minister accepted by the office of the Prime Minister. UK citiizens can sign the petition on the Prime Minister’s website

The petition reads:

    We the undersigned petition the Prime Minister to make it
    compulsory for Local Authorities, NHS and Social Care to work
    together to produce a strategy with guidelines for Autism /
    Asperger syndrome  including diagnosis, pathways to services
    and criteria that are realistic and address supportive and
    lifelong support,rather than waiting for people to fall into
    crisis before services respond.  Also to create a national data
    base of the numbers of people diagnosed as being on the ASD
    spectrum.

    for people on the Autism/Asperger Spectrum specifically to
    address the issues on Fair Access to Care and support that many
    consequently fall through the services. Also adopting a clear
    pathway to services for adults on the spectrum who currently
    are referred to as ‘high functioning’ rather than awaiting
    their move into ‘crisis’ To include more preventative and
    supportive approach. We need to have a national data base on
    the numbers of people affected.  Currently services are only
    estimating numbers consequently do not see the need for
    strategies and specific services.

I am sure this petition will strike a chord with many people in the UK and chime with the experience of autistic people and their families around the world. In the UK we have plenty of good practise guidelines for health, education and social care but very little effort on the part of government to mandate these guidelines or provide adequate funding. Sometimes these guidelines come together and are implemented in the provision of children’s services. Even so,

• Over 50% of children are not in the kind of school their parents believe would best support them.

• 66% of parents said their choice of school was limited by a lack of appropriate placements for children with autism in their local area.

• Only 30% of parents of children in mainstream education are satisfied with the level of understanding of autism
  across the school.

• In mainstream schools only 27% of parents say that all their child’s teachers could adjust their approach and
  teaching materials - and therefore meet their legal duties under the SEN and Disability Act (2001).

• Special Educational Needs Co-ordinators (SENCOs) are responsible for co-ordinating provision for children with
  autism in schools, yet 23% of parents are dissatisfied with SENCOs’ level of understanding of autism.

• Over 40% of children with autism have been bullied at school.

• 45% of parents say it took over a year for their child to receive any support. 

• There are more appeals to the Special Educational Needs (SEN) and Disability Tribunal in England about
  autism than any other type of SEN. 79% of parents who appealed to the Tribunal in this survey won their case. 

• Parents say the biggest gap in provision is social skills programmes. 

• 1 in 5 children with autism has been excluded from school, and 67% of these have been excluded more than once.

• Only 53% of young people aged 14 to 19 years have transition plans, falling to just 34% of students in mainstream schools.

Source: Make Schools Makes Sense Autism and education: the reality for families today. (NAS 2006)

The Makes Schools Make Sense Campaign did make a difference. The government has responded to our concerns and made a number of commitments designed to improve education for autistic children in England. That still leaves the rest of the United Kingdom. But it is a start.

If the situation for children is bad, then for adults it is dire. This year, the Think Differently About Autism Campaign is focusing on adults under the slogan “I exist” Its main points are that,

• Nearly two thirds (63%) of adults with autism do not have enough support to meet their needs.

• 92% of parents are worried about their son or daughter’s future when they are no longer able to care for them.

• 61% of adults with autism rely on their family financially and 40% live with their parents.

• 60% of parents believed that a lack of support has led to higher support needs later on.

• At least 1 in 3 adults with autism are experiencing severe mental health difficulties due to a lack of support.

 Source: I Exist. The message from adults with autism in England (NAS 2008)

Barbara’s petition can only help to focus attention on these problems. Autistic people and their families, along with autism professionals and advocacy organizations spend a lot of time arguing about important issues like causation, cure and the various interventions that are supposed to help autistic people fit in with society. But while we may disagree on how to assist autistic people in coping with society, we should all agree to support Barbara’s petition and campaign to make society better able to understand and cope with autism. 

NB. Throughout this blog post I refer to England and link to materials pertaining to NAS campaigns in England. This is a consequence of the different forms of government that pertain throughout the United Kingdom and the way these differences impact upon the provision of services. There are parallel campaigns in Scotland, Northern Ireland and Wales that take account of these differences.

April 23rd, 2008 Posted by Mike | Autism rights, National Autistic Society, adults, autism advocacy, disability rights, education, government, parents | 3 comments

An open letter to David Kirby and Dan Olmsted about the Kathleen Seidel subpoena

Orac has written this open letter. Please spread it far and wide.

Dear Mr. Kirby and Mr. Olmsted:

You are both journalists. I realize that neither of you at present work for the traditional press and that both of you seem to devote yourselves mainly to blogging (Mr. Olmsted at the Age of Autism and Mr. Kirby at the Huffington Post), but I have to believe that you both still consider yourselves to be at heart journalists. That is why I am writing this to you and posting it publicly on my blog. If you’ve ever read any of my posts on this issue, you probably realize that I strongly disagree with your positions and that at times I have been quite harsh in my judgment of articles you have both written. I am, however, hoping that for this one issue, upon which (I hope) we can all agree that you will for the moment put that aside and consider what I have to say. I am appealing for your condemnation of what has been done to autism blogger Kathleen Seidel.

The letter continues at Respectful Insolence

I hope that Olmsted and Kirby respond. As Orac points out later in his letter, if a vaccine injury lawyer is allowed to silence his critics with a subpoena, government and industry lawyers will take note and journalist bloggers like Olmsted and Kirby could be next in line.

April 6th, 2008 Posted by Mike | Neurodiversity, journalism | 11 comments

Shoemaker’s subpoena is a load of cobblers

Kathleen Seidel’s Neurodiversity blog is an example to us all. She combines meticulous research with lucid prose.  Her writing is as good as or better than much that passes for investigative journalism today.  Now she has had to add the skills of a lawyer to those of a journalist in response to a subpoena from Clifford Shoemaker. This subpoena is so onerous and burdensome in its demands that it beggars belief, even in an overlawyered society like America.  

Kathleen is being subpoenaed to testify at the taking of a deposition in the case of Lisa Sykes et al versus the Bayer Corporation and to provide

All documentation  pertaining to the set up, financing, running, research, maintaining the website: http://www.neurodiversity.com that specifically relates to Lisa Sykes, her son, her lawsuits (NVICP and civil litigation, her church position, her family in general, her associates, her attorneys, her Citizen’s petition (FDA Filings and Court Filings) and her physicians. This shall include, but not be limited to bank statements, cancelled checks, online or offline donation documents, and tax returns. This to include the names of persons helping, paying or facilitating in any fashion these endeavours.

Whoa there!

1. Kathleen is not a party to the dispute between Sykes and Bayer.
2. She has had no contact with any of the parties to the dispute.
3. The content of her website will have no bearing on the outcome of the case which will be determined by the quality of the expert testimony brought to the case by both sides, not the sleuthing of a citizen blogger.
4. Nobody pays her to maintain Neurodiversity. She puts her own time and money into it.

It is obvious what Shoemaker is after. He is on a fishing trip to see what he can learn about Neurodiversity.com. Perhaps he thinks it is a front for Big Pharma and he can turn up something that will embarrass Bayer in court. He is only in it for the money and so cannot conceive how a private citizen  could put so much effort into a resource like Neurodiversity.com and have the moral rectitude to blog about the abuse of autistics by quack practitioners and their attempts to use the courts to justify their behaviour and all with no thought of personal gain for herself.

But Shoemaker is not just fishing. It seems his intention to bully and intimidate Kathleen into silence. Because the subpoena asks for more, a lot more. Kathleen describes it thus in her motion to quash,

The subpoena commands production of “all documents pertaining to the setup, financing, running, research, maintaining the website http://www.neurodiversity.com“ – including but not limited to material mentioning the plaintiffs – and the names of all persons “helping, paying or facilitating in any fashion” my endeavors. The subpoena demands bank statements, cancelled checks, donation records, tax returns, Freedom of Information Act requests, LexisNexis® and PACER usage records. The subpoena demands copies of all of my communications concerning any issue which is included on my website, including communications with representatives of the federal government, the pharmaceutical industry, advocacy groups, non-governmental organizations, political action groups, profit or non-profit entities, journals, editorial boards, scientific boards, academic boards, medical licensing boards, any “religious groups (Muslim or otherwise), or individuals with religious affiliations,” and any other “concerned individuals.”

Could any of this be connected to the fact that 4 hours before being served with this subpoena Kathleen published a blog post The Commerce in Causation which enumerated legal costs paid to Mr Shoemaker by the National vaccine injury compensation Programe to the sum of $584,449.28.

Kathleen ends that post thus:

These nonprecedential decisions reveal only a portion of Mr. Shoemaker’s VICP income since June 2006; they pertain to fee requests to which HHS and the presiding Special Master raised few objections. In contrast, published decisions on fees and costs offer a more detailed view of controversies calling for a comprehensive judicial analysis, and of the billing practices of petitioners’ attorneys.

to be continued

Could the real purpose of this subpoena be less to do with what Shoemaker thinks Kathleen might know about Sykes versus Bayer and more to do with what he thinks she might know about him? Whatever his motives, he has managed to spread his name  accross the Internet to almost universal opprobrium.  Anti quackery blogs like Holford Watch, Science Bloggers, Autism Hubbers and legal blogs like the aptly named Overlawyered are all chiming in on Kathleen’s behalf. I Speak of Dreams is trying to keep a comprehensive list of them all. The total currently stands at 52.

Some voices have remained silent. Can you imagine the reaction in some quarters if the Department of Justice decided to subpoena David Kirby to discover who was leaking court documents to him in the Poling case. By his own admission

The unprecedented concession was filed on November 9, and sealed to protect the plaintiff’s identify. It was obtained through individuals unrelated to the case.  

As a fellow blogger it ought to be in his interest to support Kathleen against this abuse of the legal process. How about it, David?

April 5th, 2008 Posted by Mike | Autism, Neurodiversity, journalism | 13 comments

Dr Tayloe, apologies from (some of) the autism community

David T Tayloe is a pediatrician from Goldsboro, North Carolina (NC) and president elect of the American Acadamy of Pediatrics (AAP) He seemed a decent fellow when I watched him on on the recent Larry King Show about autism. This is what he had to say, taken from the transcript of the show (with numerous interruptions […] from Jenny McCarthy edited out.)

On Vaccines

“Well, first of all, the childhood vaccine program is the most beneficial public health program in the history of mankind. […]
And you must have immunization rates that approach 90 percent to keep diseases such as polio, measles, whooping cough and diphtheria from coming in here from countries. They’re one plane ride away and we’re that close to an epidemic.
So, for the American Academy of Pediatrics to want to change the immunization program, there would have to be medical evidence — indisputable medical evidence that we ought to change it. Now […] we’ve changed it about six times just in the last 10 years. We changed the whooping cough vaccine, we changed the polio vaccine, we changed the rotavirus vaccine.

KING: Why are there so many? TAYLOE: Because we’ve been able to develop ways to vaccinate children to prevent pain and suffering. Just in my practice, I’ve watched three children die of each of the different kinds of bacterial meningitis that we immunize for today. And it’s tragic when that happens. I, in my practice, have not referred a child to the compensation program for a vaccine-related injury […] and our practice has seen over […] over a hundred thousand kids a year. […] They’re recommended.

On drug company donations to the AAP 

TAYLOE: I would say it does not influence policy. We have very strict conflict of interest and ethical statements, and abide by the professionalism guidelines of the AMA and are very sensitive issues. Again, we’re not afraid of the truth about vaccines. We’re all for vaccine safety research, efficacy research, all of that.

On profit from vaccines

TAYLOE: I think vaccines are a very difficult way to make a profit in a pediatric practice, because the price of the newest vaccines are like 120 a dose, one dose. And the insurance companies don’t want to pay us much more than that very bare-bones amount for all the costs we have with the vaccines. Then the administration fees are less than what’s recommended by Medicare in most practices.So physicians, as a rule, are taking a loss on vaccines in their practices. But we feel so committed to the public health effort, that we’re going to do it. And just about half the children receive government funded vaccines, which are free vaccines that go to the states. There’s no profit at all there. You just give the vaccine and then charge a government controlled administration fee.So this is not a profit center for pediatrics. This is something that’s for public health that we all do. And it’s the right thing to do.

On listening to parents about autism

TAYLOE: At the American Council of Pediatrics we’re making some progress on that, because we had two policy statements in November, and a tool kit for our members. We’re getting 18 and 24 month screens. I like to screen between six and 12 months, carefully. […]We are quite willing to work with anyone on this. We would like to be […]

This all seems quite reasonable to me. Dr Tayloe is expressing the mainstream medical opinion on vaccines, which was why he was invited onto the show. But he is not just a mouthpiece for the AAP. Dr Tayloe heads a pediatric practise in Goldsboro NC and he is obviously motivated by a desire to care for children. I found the part were he talked about the children in his practise who died from diseases that can now be prevented with vaccines particularly moving.

However, not everybody shares my opinion. Those who cling to the notion that vaccines cause autism appear outraged by his comments. A lady who once claimed to bring “graciousness” to the debate about autism wrote on her blog:

Dr. Tayloe said that in his practice that has seen 100,000 patients that he has never referred one person to the Vaccine Injury Compensation Fund. If he has never seen a serious vaccine injury, it is not because he has not come across one, it is because he has his head up his ass.Tayloe is just dangerous.

This man has GOT to be removed from the position that he has been elected to before he takes office. I would take Karp in a second over this guy. Karp was wrong, but he wasn’t crazy person saying insane things with a smile wrong.

Actually, Dr Tayloe’s words show us how rare vaccine injuries are. There are around 60 million children aged 14 and under in the USA and around 60,000 pediatricians. Out of all the millions of kids who have been vaccinated, there have been less than 10,000 petitions (8,224) to the US Court of Federal Claims under the National Vaccine Injury Compensation Program since its inception nearly twenty years ago in October 1988.  Though  I hesitate to contradict a gracious lady, it seems to me that, in the light of these figures, the likelihood of a pediatrician encountering a case of vaccine damage is low enough to encourage belief in Dr Tayloe’s statement.

Never mind. Our gracious lady suddenly adds an interpolation:

[UPDATE: OMG! Turns out the Vaccine Injury Compensation Court exists in part due to the 3.5 million dollar malpractice suit that Dr. David Tayloe lost in 1985 when a child he gave the DPT shot to magically got permanent brain injury!! That Asshole just got on TV and implied that he had never SEEN a vaccine injury in his practice!!! ]

Actually this was Dr Tayloe’s father, David T Tayloe Snr. Our David Tayloe, David T Tayloe Jnr. was still at medical school during the fateful immunization in 1974. The settlement was reduced to $1.1 million on appeal and the real culprit, if ‘culprit’ is an appropriate word in this case, was the practise nurse who failed to inform Dr Tayloe Snr. of a reported adverse reaction by the child to his initial DPT shot.

Incidentally, I wrote to the lawyer who prosecuted the case against Dr Tayloe Snr. and he told me that Dr Tayloe,  “seemed like a  nice guy who just made a mistake which was fatal to a baby.” Our gracious lady is less than gracious when she writes,

I got an email from someone Tayloe went to med school with that says this was his father. In thinking about where to adjust my judgmentalism meter, I think that I will retract my declaration that he is an asshole, and say that he is a dangerous, foolish man.

That is big of you, Ginger. Then you go on to say:

A jury told his own father that he was more than three million dollars worth of wrong for administering a shot that plunged a boy into brain damage, and he learned nothing from it, continuing to claim that ‘all vaccines are safe for every child’, and that there is no such thing as serious vaccine injury. (or maybe, but barely ever, as his statement last week was that there was not “any relationship between vaccines and permanent injury”, and this week he has downgraded his stance to “extremely rare”.) Even though it was not directly his, he should still know better because of his father’s legacy.]

Sins of the fathers? Even so, if that was my legacy I would be very much aware of the possibility of vaccine damage. And I am sure that Dr Tayloe Jnr is aware. But he must be equally aware of his profesional obligation to maintain the health of the nation by encouraging take up of the vaccine program. Considering his family history I can think of no man better equiped to lead the AAP in this task.

There are many people who presume to speak on behalf of the autism community. Very few of them speak for me. So, speaking entirely for myself, I just want to apologize to Dr Tayloe on behalf of all the people like me for the ill-deserved remarks that have come your way as a result of your appearance on the Larry King Show.

April 5th, 2008 Posted by Mike | Autism, vaccines | 7 comments

Karen McCarron sentenced to 36 years in prison

Karen McCarron was convicted in January of murdering her autistic daughter, Katie. Today she was sentenced to 36 years in prison. It is too soon to know if she will appeal. When Katie was murdered there was a real concern that this would be presented as yet another case of a desperate mother driven to murder by the awfulness of her situation. This Way of Life lists 38 people who were killed because they were autistic. Most of their killers received modest sentences, if they were sentenced at all. But in Katie’s case attempts to present Karen as the victim of her daughter’s autism were forestalled by the rest of Katie’s family.

Showing enormous strength and dignity, Katie’s grandfather Mike McCarron stepped forward to demonstrate that Katie was loved and accepted by all her family, all that is except her mother. Katie was a source of joy to all who knew her, all that is except her mother. I discussed the reasons for this in my earlier post when Karen was found guilty.

Karen believed that autism was the most terrible thing that could happen to Katie, that autism was worse than cancer. She believed those who told her that vaccines caused autism and blamed herself for allowing Katie to be vaccinated. She believed those who told her they could cure Katie’s autism. And when the cure did not work she saw no future for herself with an autistic daughter. Karen’s crime was a selfsh act, committed because she wanted a life without autism.

In the world of autism there is often a rift between those like myself who argue for autism acceptance and those who believe they owe it to their children to look for a cure.  But parents like Karen McCarron are a special case and I have no desire to exploit her wickedness to berate the biomedical community. I believe that to do so would be to mirror the disrespectful behaviour of those self appointed autism advocates who tried to exploit Katie’s death.

I  give the last word to Paul McCarron, Katie’s father, who greeted the guilty verdict thus

 “I ask all parents especially those of children with disabilities to ALWAYS love your children and be proud of them. Cherish every moment you have with them. Love, patience and tender efforts are the best therapies.”

April 1st, 2008 Posted by Mike | Autism | 5 comments

Melanie Phillips is wrong again.

“The Wakefield Witchhunt” - Melanie Phillips - The Spectator - Friday, 21st March 2008

A couple of days ago, yet another story appeared claiming that fresh research had shown that there was no link between the MMR vaccination and autism. This new research was said to have shown that, contrary to the claims made by Dr Andrew Wakefield, the surgeon at the centre of the MMR scare, there was no relationship between gut problems and autism, the core of his concerns. It also claimed that the discovery furthermore damaged the related theory that a gluten-free diet could help children with autism.

This must be a first, even when judged by the standards of accuracy previously set by newspaper columnist, Melanie Phillips. Every statement of fact in her opening paragraph is wrong! The ”fresh research” makes no mention of MMR apart from acknowledging a potential conflict of interest because one of the authors, John March “has previously acted as an expert witness for the litigants in the MMR litigation case conducted by Alexander Harris against three MMR vaccine manufacturers, which involved urinary analysis of both litigants and non-litigant controls using MALDI-TOF mass spectrometry. He has an autistic child who was not part of this legal case.”

The next sentence is very telling, “was said to have shown that…” Was said by whom? Has Ms Phillips actually read the research in question or is she relying on her feed from LexisNexis? If she had read the research paper she would know that it makes no claims regarding the purported link between gut issues and autism. Neither does it question the efficacy of the gluten and casein free diet. The authors are careful not to dismiss the diet. Instead they call for more research into it. NHS Choices gets it right.

Despite the newspaper headlines and coverage, the study did not look at the effects of the MMR jab and autism. Instead, it tested and compared the urine of autistic boys with the urine of boys without autism. The researchers conclude that there were no differences between the levels of peptides in the groups and say they have effectively disproved the ’leaky gut theory‘. However, further research is needed to establish whether a casein and gluten-free diet has other effects on autism.The researchers call for more studies into special diet as a treatment for autism, but they do not suggest that their research has any implication for the discredited MMR vaccine/autism theory.

Ms Phillips is on firmer ground when quoting directly from the press release

“Dr Hilary Cass, from Great Ormond Street, said: ‘It is very distressing to have a diagnosis of autism, a lifelong condition. Many families are driven to try out interventions which currently have no scientific basis. For example, advocates of the leaky gut hypothesis offer children a casein and gluten-free diet which as yet lacks an evidence base.’

But then she puts her foot in it by adding her own commentary 

This particular observation is a telling indication that this study bears little relation to reality. For there are countless families whose autistic children’s suffering from gut problems has only been eased, and their autistic symptoms improved, by the introduction of precisely such a diet. ‘No evidence base’? Tell that to those families. It is their lived experience.

All together now, for the benefit of Ms Phillips: The plural of anecdote is not data! Testimonials from parents need to be backed up by solid data from properly conducted research. We are awaiting the outcome of a couple of studies that may provide that evidence base.

Second, despite the way this was presented in the media this is not a new piece of research at all. It is instead a recycled version of a study by Baird G. et al, published in the Archive of Diseases in Childhood on February 5 and reported in the press around that time.

Oh dear! Where on earth did she get that idea? Baird G. et al did take advantage of an earlier study [Baird G, Simonoff E, Pickles A, et al. “Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP)” Lancet 2006; 368:210–15.] for their study of “Measles vaccination and antibody response in autism spectrum disorders.” But this has nothing to do with Dr Cass.

Dr Cass recruited children “from two tertiary referral centres specialising in autistic spectrum disorders whilst controls were recruited from and mainstream primary and secondary schools in the same geographical area. 65 boys with autism mean age 7:4 years (5-11) and 158 control boys mean age 7:8 years (4:2-11)”

Dr Baird used “A community sample of vaccinated children aged 10–12 years in the UK with ASD (n=98) and two control groups of similar age, one with special educational needs but no ASD (n=52) and one typically developing group (n=90), were tested for measles virus and antibody response to measles in the serum.”

So Dr Cass “recycled” this study using different researchers, different children, different research aims and methods, and different funding bodies. The two studies are totally unrelated. Nevertheless Ms Phillips goes on to cite Wakefield’s response to Baird et al and a letter by John Stone in response to Baird et al as if they apply to Cass et al! Not that this mattters to Ms Phillips. Nowhere does she discuss the content of either Baird’s or Cass’s research or evaluate the hefty quotations from Wakefield and Stone. (They total 1100 words in an article of 2000 words. I wonder if she is paid per column inch.) No. This is just another way to reiterate the myth of the martyrdom of Andrew Wakefield at the GMC.

 No stone is being left unturned by the medico-political establishment and its creatures in the media to ensure that this doctor is destroyed.

Ms Phillips, like David Kirby, has pretensions of impartiality.

As I have repeatedly said, I have no idea whether Wakefield is correct or not in his concerns about the possible adverse effects of the MMR vaccine on a small sub-set of vaccinated children. Nor do I know whether any of the charges being levelled against him at the GMC has any legs. But I do believe — as I wrote in my series of articles on the subject for the Daily Mail in 2003 here, here and here — that many of the statements made by the Department of Health and medical establishment about the ‘proof’ of the vaccine’s unchallengeable safety are deeply misleading.

Wow! She has no idea about MMR and autism. She has no opinion on Wakefield’s culpability. But she does have an opinion on the stated opinions of the Department of Health and the medical establishment on these very matters. Furthermore, her opinion of the opinions of others on matters on which she has no opinion is the same opinion she had 5 years ago and we can read it “here, here and here.” Meanwhile, back to the present and a few more gems from Ms Phillips.

No-one has ever suggested that the MMR vaccine causes all or most of the incidence of autism. If Wakefield is correct, it is only a small proportion of children whose immune systems may be unable to cope, for whatever reason, which makes them particularly vulnerable to such ill-effects.

No-one? How about the  presenter of “Origins of the Autism Epidemic,” Andrew Wakefield. And how small is a small proportion? Researchers like Cass and Baird provide us with data. According to Wakefield:

“We have over the last 10 years evaluated several thousand children on the autistic spectrum who have significant gastrointestinal symptoms. Upper and lower endoscopy and surgical histology have identified mucosal inflammation in excess of 80% of these children.”

“Several thousand children?” We know he had examined 12 children by 1998 There were around 1300 children in the UK class action against MMR that failed.  Perhaps he examined them all. Then Wakefield went to work for Jeff Bradstreet, an exorcist in Florida before setting up Thoughtful House in 2005 where Arthur Krigsman scopes every child that walks through the door. If we average it out and say 2 children a day every day, not counting weekends and holidays for 10 years that gives us around 5000 kids with and endoscopic investigation and 4000 turned up positive for enterocolitis and autism. Yeah, whatever. Perhaps Wakefield will publish his data one day and end all the guesswork.

And contrary to the message being pumped out by the medical establishment that the vaccine has been proved to be safe — by studies which are all either flawed, inadequate or irrelevant — the fairest and most accurate thing to say is that the jury is still out.

Vaccines will never be “proved safe” if by this you mean that they will be absolved of all risk. But they are safer than the diseases they protect against. How about it Ms Phillips? Would you like polio or the polio vaccine?

One of the most reprehensible weapons being wielded in the witch-hunt against Wakefield is the claim that anyone who gives any credence whatever to his concerns is responsible for the incidence of measles amongst children whose parents are as a result too frightened to give them the MMR vaccination. There are two obvious points to make in response to this piece of moral blackmail: 1) the whole panic could have been avoided by offering single measles, mumps and rubella jabs rather than the triple MMR, and 2) it is surely just as important as avoiding cases of measles mumps and rubella to avoid causing the kind of catastrophic damage to the brain and gut displayed by the children at the heart of this controversy.

Wrong again! Offering single vaccines is tantamount to admitting that MMR is dangerous. It would have destroyed public confidence in the whole vaccine schedule and take up of the three shots would have been significantly less than the triple shot, always assuming we could source three separate vaccines that had been adequately tested for safety. And regarding point 2), hang on! How do you know that single vaccines would avoid this “kind of catastrophic damage” unless you already had an opinion about the effects of the MMR? Remember? The opinion that Ms Phillips claims not to have?

And there is a further and quite appalling point to note. This whole saga started because parents of such children found that their family doctors were dismissing out of hand their children’s gut and brain problems, accordingly refusing to alleviate their suffering. Now, as a direct result of the animosity towards Wakefield that has been whipped up — and the fear that any doctor who suggests he might be right will similarly find him or herself at the receiving end of the medical establishment’s fist — children exhibiting this combination of gut and brain damage are finding it difficult to obtain treatment.

Yes! Because quacks like Wakefield and their silly media acolytes have made it next to impossible for a doctor to diagnose and treat GI disorders in autistic children without being tarred with the same brush! Thank you Dr. Wakefield. Thank you Ms Phillips.

As the resumption of the GMC hearing draws nearer, one has to ask whether this will serve the cause of truth and justice and the relief of suffering — or is it instead merely a show trial which will bring about the precise opposite?

I hope that Wakefield is severely chastised and that we can move on to addressing the real needs of autistic children and adults free from the need to constantly address spurious scare stories about vaccines.

Melanie Phillips writes for the Spectator. It’s editor used to be Boris Johnson, who masked his intellectual prowess with the appearance of dimwitted buffoonery. Ms Phillips is just the opposite.

March 23rd, 2008 Posted by Mike | Andrew Wakefield, Autism, MMR, journalism, parents, politics, vaccines | 13 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