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Wakefield’s Inquisition: Abuse of the legal system and media by anti-vaccine doctor

29 Jan

As the GMC approaches a verdict on the misconduct of Andrew Wakefield, anti-vaccine sources are engaged in a concerted effort to make the “doctor” into a martyr rather than a failed researcher. It is vital to ensure that the general public is not in any way lulled into sympathy for the “doctor”.  In my judgment, the most important point to drive home is that, while Wakefield and associates play up the image of the “doctor” being persecuted for his ideas, he is the one who has persistently acted to suppress any discussion not entirely in his favor.  To that end, I have compiled the following list, complete to the best of my ability, of recorded frivolous lawsuits, libels, complaints and harassment by Wakefield and his immediate associates against his numerous critics.

3 October 1996: Wakefield files a complaint with the Broadcasting Standards Commission over a broadcast critical of his claims that MMR was associated with Crohn’s disease.

1998-2003: Nick Chadwick withholds negative results suppressed by Wakefield from the public, apparently as required while litigation was ongoing.

February 2002: Wakefield files or threatens to file complaints to  the GMC against critical colleagues. One formal complaint involved a statement made in 1997. He reportedly told government chief medical health officer Sir Liam Donaldson: “It has come to my attention that you have sought details of our studies from the ethical practices committee of the Royal Free NHS trust. I infer from this that faced with an increasingly compelling scientific case against the MMR vaccine you are seeking to discredit the scientists involved. Your attempts to interfere in the scientific process are unacceptable. Not only do you have no right whatsoever to this information without permission, but also your action has had an indirect but nonetheless profound effect upon our ability to help these desperately ill children. I am seeking advice prior to taking this issue up with the General Medical Council.”

27 February 2004: The Sunday Times and the Lancet a letter from Wakefield’s attorneys denying Feb. 20 reports that Wakefield failed to disclose conflicts of interest related to the 1998 paper, with the stated purpose “to invite you to agree promptly to publish a full apology to our client”.

November 2004: Wakefield files a lawsuit against Brian Deer and Channel 4 for libel. At around the same time, his attorneys send a letter falsely alleging that Deer “has made a formal statutory complaint to the General Medical Council against Mr Wakefield and others concerning these matters.” The letter also refers prominently to “a current Press Complaints Commission” of Brian Deer, though no such complaint is on record. The claim of a complaint by Deer is taken up by Carol Stott, and continues to circulate to the present despite repeated denials by Deer and the GMC. Curiously, a February 27, 2004 BBC article stated, “The General Medical Council is now carrying out an investigation into Dr Andrew Wakefield, the doctor who led the 1998 study.” This statement, coming only five days after Deer’s first report was published, not only weakens any suggestion that Deer directly initiated the investigation, but raises the possibility that some form of GMC inquiry on Wakefield (conceivably rising from his own past complaints against others) was under way even before Deer’s allegations were made public.

March-October 2005: Wakefield’s attorneys seek to freeze further action in the libel suit against Deer. Justice Eady “The claim form was issued on 31st March but only served on 22nd June 2005. Thereafter, it seems, the particulars of claim were served with some reluctance following prompting by the Defendants and an order of Master Rose on 27th July of this year. They eventually appeared on 10th August. There has thus apparently been a rather relaxed and dilatory approach towards litigation of a kind which is supposed to achieve vindication of reputation.” He further questions Wakefield’s motives in the lawsuit as a whole: “Claimant wished to extract whatever advantage he could from the existence of the proceedings while not wishing to progress them or to give the Defendants an opportunity of meeting the claims.”

31 January 2005: Wakefield files a second lawsuit against Deer, over content of briandeer.com, and a third against the Sunday Times and Channel 4.

29  June 2005: Cambridge Evening News receives a letter from Wakefield’s attorneys over a citation of a Brian Deer report (worded as “the article alleged…”), calling on the paper to “publish an apology”.

July 2007: Martin J. Walker initiates smears against Brian Deer.  Claims include allegation that Deer initiated GMC hearings against Wakefield.  Though Wakefield condemns Walker on 3 November 2008, Deer reports a December 2009 newsletter for Wakefield’s “network” requesting donations to pay an additional 5,500 pounds to Walker.

6 February 2009: A letter sent to Brian Deer requests that an article (published 2 days later) presenting evidence that Wakefield case histories in 1998 paper not be published: “(Y)ou appear to be considering publishing an account which covers much of the same material as is being considered by the Panel. Publication of your allegations and account at this time will give rise to serious risk that the GMC process will be prejudiced and the faimess of the hearing compromised. You also know that, at this juncture in the GMC process it would be inappropriate for Dr Wakefield to give a detailed response to you. He has denied t he allegations and gave a detailed response  over many days to the GMC Panel.”

13 March 2009: Andrew Wakefield files complaint with Press Complaint Commission, over Feb. 8 story. The key allegations are that Deer “knew that these allegations were either false or misleading, based on incomplete records – or, at the very least, open to question” and that “it was he who brought the original complaint. He therefore has an undeclared interest in its conclusions.”

20 March 2009: Andrew Wakefield files addendum to complaint over Brian Deer’s statement, “I did not lay the initial complaint against Wakefield. This allegation is a fabrication, albeit rather a small one in the MMR issue.”  Bizarrely, Wakefield presents truth of his own allegation as immaterial: “(W)hether or not Mr. Deer initiated the GMC investigation as ‘complainant’ in his letter dated Feb. 25, 2004, or acted as an ‘informant’ in an investigation already begun by the GMC, he did not disclose his own direct participation in the GMC investigation in his most recent accounts in the Sunday Times, intending to give the public the misimpression that he was acting as a neutral and disinterested reporter.“

3 July 2009: Thoughtful House release, “Press Complaints Commission Orders Sunday Times to Remove MMR journalist’s Stories on Dr. Wakefield from Paper’s Web Site”, alleges, “The PCC decision today appears to indicate there are questions about the accuracy of the Deer stories,”  despite implicit admission in Feb. 6 that Deer reported only what had been alleged by others.

9 July 2009: Second press release, “Sunday Times Defies Press Complaints Commission”, alleges that “the Sunday Times has now defied the PCC by putting the stories back online after complaining Dr. Wakefield publicly announced the PCC’s directive.”

8 September 2009: NAA press release “Offit’s Failure to Disclose Jeopardizes Swine Flu Vaccine Program” is carried by Reuters.  The stated location of “Austin, Texas”, in contrast to NAA headquarters location of Nixa, Missouri, strongly suggests that Wakefield and/or Thoughtful House are the creators of the release. The release defends Wakefield, attacks Paul Offit, and by extension attacks Dateline broadcast in which Wakefield was portrayed critically.  It includes the claim, first made in a hoax published by Age of Autism, that “Offit’s share of a royalty sale for the Rotateq vaccine to Merck is a minimum of $29 million and may approach $50 million.” Wakefield’s use of a third party to promote the hoax in September raises the possibility that he significantly contributed to the hoax itself, in which figures were inflated through an inapplicable 2007 CHOP policy and documents from a patent which preceded the one which was sold.

27 January 2009: On the day before the GMC released its first findings against Wakefield, a 104-page complaint is filed with the GMC by multiple or.  The most straightforward and prominently publicized claim is that Drs. Horton, Salisbury, Zuckerman, Pegg, and Rutter “gave false statements”. Obviously prepared long in advance, this complaint can be presumed without merit, and could easily be used as a basis for countersuits. Its greatest significance will almost certainly be as yet another obstacle to timely disclosures of findings and to further legal actions, of which US disciplinary proceedings against Wakefield and litigation against him and Thoughtful House are the most threatening to the “doctor’s” interests.

In hindsight, there are many things that were “off” about Wakefield. He relied (perhaps not wholly by his own choice) on an image of a “young maverick”, though he was in fact a well-established but not distinguished researcher with dozens of previous publications (none of which is listed in a Thoughtful House bibliography!). He earned his doctorate in 1981, at the strikingly early age of 25, yet PubMed records only 3 papers of his published before 1991. He held several formal titles at Royal Free, yet his contract stipulated that he have “no involvement in the clinical management of patients.” His previous efforts to link MMR with Crohn’s disease came very close to drawing charges of fraud (see review )  His publications in the affair show a shifting roster of coauthors and repeated changes in publishing journals. I find the path of his career (particularly his early display of apparent talent followed by surprising early difficulties) strikingly like that of artists who go on to commit forgery.

The bottom line is that the only thing necessary to stop Wakefield was for those who knew the most about his conduct to speak up before his spurious claims became cultural currency.  The best way to ensure that similar (or even worse) offenders are exposed before they do harm is to reform the courts, so that litigation is NEVER allowed to trump timely criticism among scientific professionals.

autism epidemic science, autism vaccine science

27 Jan

Ex Derdrie Imus Environmental Center for Pediatric Oncology team leader Philip J. Landrigan is the latest scientist once associated with the debunked vaccine causation ideas to repudiate those ideas in a scientific journal.

Writing in Current Opinion in Pediatrics, Landrigan has published ‘what causes autism? Exploring the environmental contribution’ in which he explores what might be a plausible environmental causation. He also touches on genetics and the so-called ‘autism epidemic’.

Touching on genetics, he states:

Genetic and familial factors are unquestionably involved in causation of autism [4]. Families with multiple cases have been described. Autism has repeatedly been seen in sibs and twin pairs. Concordance in monozygotic twins is
reported to be as high as 70% [15], and, when the broader phenotype of autism is considered, concordance in monozygotic
twins approaches 90%. Concordance rates for autism in dizygotic twins appear no higher than among singleton siblings. Families with autistic children may contain members with ‘autistic traits’ such as social isolation or tendency toward repetitive behavior [13]. Autism occurs in a number of genetic conditions, among them Fragile X syndrome, Down syndrome, Cohen syndrome, Angelman syndrome [16] and Rett syndrome [17].

Regarding genetics as a whole Landrigan claims that autism can already be accounted for to the tune of between 7 – 8%. In an email to me he stated:

THE FRACTION OF AUTISM CASES THAT CAN RELIABLY BE ATTRIBUTED TO GENETIC CAUSES WILL CERTAINLY INCREASE AS MORE RESEARCH COMES IN

By how much though? No idea and Landrigan wouldn’t be drawn.

Regarding the ‘epidemic’ Landrigan states:

The reported increase in prevalence of autism has triggered vigorous debate as to whether the trend reflects a true increase in incidence, or is merely a consequence of expansion in the definition of ASD and greater awareness, improved diagnosis and better reporting [11]. This highly controversial question is not yet settled [14]. A
recent critical analysis concludes that increases in recognition, changed diagnostic criteria, and changing public
attitudes about autism have played a major role in catalyzing the upward trend in reported prevalence. This analysis observes, however, that the possibility of a true rise in incidence cannot be excluded [12].

Which should be – if one is truly interested in following the science so far – the correct conclusion. In other words, nobody really knows but the recent increases in recognition, changed diagnostic criteria and changing public attitudes (amongst other things) have played a major role.

In relation to vaccines, Landrigan states unequivocally that:

To address the issue, a series of studies was undertaken in the US, the UK, Europe and Japan. None of these studies have found any credible evidence for a link between vaccines and autism [12]…..Fear of autism does not justify failure to vaccinate children against life-threatening diseases [75].

In an email to me Landrigan stated:

IT WAS RESEARCH THAT NEEDED TO BE DONE. BUT NOW THAT WE HAVE MORE THAN DOZEN, HIGH-QUALITY NEGATIVE STUDIES OF THE ISSUE IT IS TIME TO MOVE ON…

I’m not sure it was research that needed to be done given the extremely tenuous hypotheses that began the various vaccine/autism strands but I agree that it is time to move on.

I was somewhat surprised at this paper as I had become used to seeing Landrigan’s name associated with those who believe vaccines cause autism and certainly his involvement with Derdrie Imus would indicate his belief in that set of ideas. It was a nice surprise to see that he was sticking to the science.

So what can we draw from this? First and foremost we have to say that a colleague of Derdrie Imus stating publicly that vaccines don’t cause autism is the biggest red flag so far that even the scientists who once gave credence to those ideas are moving away from them. Secondly we can say that althoough we cannot preclude the idea of a real actual increase, the major role in causing an increase in autism numbers still remains the combination of increased recognition, changed diagnostic criteria, changed public attitude, diagnostic substitution, more available locations for gaining a diagnosis and more doctors trained to give diagnoses. Lastly we can say that here is a toxicologist who acknowledges that there is a strong genetic component and that that component is likely to increase.

Pity for the Rankins

26 Jan

Its no secret that Wade and I were once pretty good internet pals. We regularly communicated despite our staunch opposition to the others beliefs regarding vaccines role in autism. That changed however as Wade sunk deeper and deeper into the bad science surrounding autism.

Wade and his wife Sym have recently been the subject of a piece by the Chicagoist following Wade’s open letter to the Trib. The Chicagoist reporter (one Mr Carlson) had obviously read both the Trib articles and Wade’s open letter before writing his own piece.

And now Wade has been obligated into writing yet another blog piece as it seems the Chicagoist has taken a similar line to the Trib. Wade says:

Reading through Mr. Carlson’s brief post gave me the distinct impression that somehow the meaning of our letter had gotten lost,

A brief digression. Wade and his family used to live in the South and were affected very badly by Hurricane Katrina. Once the dust had settled they decided to resettle in Chicago. Once there I learned they had become aquainted with the infamous Erik Nanstiel and David Ayoub, both hardcore believers of the vaccine causes autism idea. Not long after that Wade’s own beliefs on the subject hardened and it wasn’t difficult to see where this hardening of beliefs was being hardened from. I found it increasingly difficult to accept the things Wade was saying. An intellegent man, his new beliefs can be summed up in his opinion of Lupron and OSR.

…we have not, as yet, utilized either the Lupron protocol or OSR #1, both of which were the subjects of Tribune smear pieces. That is not to say, however, that those interventions may not be appropriate treatments in particular circumstances. On the contrary, we know families that these interventions have helped…

The old Wade would not have ever considered using these snake oil treatments. The old Wade would not have described the Trib articles as ‘smear pieces’. The old Wade wouldn’t have described knowing families who did use them and would have been much less credulous about their effectiveness.

SO, back to Wade’s statement that he believed the meaning of his open letter had been lost. It was lost, he’s right. It was totally lost on Carlson, it was totally lost on the commenters to the site and its totally lost to people like me. Not that I’m singling myself out for any special praise – thats kind of the point. I’m just an ordinary person with no special agenda and yet Wade’s point is totally lost on me and I very much suspect the vast majority of people who read Carlson’s piece or either of Wade’s long pieces on the subject. (Its hard to say which of the two points of the Somerset Maugham quote Wade utilises for his blog ‘Have common sense and … stick to the point’ that Wade has more strongly abandoned).

I miss the old Wade very much – a strong, principled and funny man, Wade has become just another sad foot soldier in Jenny McCarthy’s Bimbo Brigade alongside his fellow Chicago hardcore believers. His child is 10 years old and I doubt very much that xe is anywhere even approaching the level of ‘cure’ or ‘recovery’ that Wade has been promised by the various DAN doctors and new friends I have no doubt xe has been worked through. Wade’s tone in both of his blog pieces is a sad, tired sort of bewilderment – a bewilderment that the world just can’t see what he can apparently see. Sadly – pitifully – the viewpoint that he has adopted only means he’s going to become more bewildered.

Autism Epidemic Talk

20 Jan

A couple of slap dash blog pieces appeared today both on the same subject – the so called autism epidemic. First off is Harold who writes about a series of interviews with David Kirby. David says:

<blockquote>It’s crazy that in this debate, we’re still debating whether autism numbers are actually going up or not, which is insanity to me. It’s people desperately clinging to this belief that autism is genetic, that it’s always been with us at this rate, that we’re just better at counting it, better at diagnosing it.</blockquote>

Harold claims David has ‘hit the nail on the head’ with this quote. I disagree with Harold and I disagree with David. Its far from insanity to examine a perfectly valid hypothesis. More later.

Anne Dachel at the Age of Autism writes :

<blockquote>Why do I personally know so many young people with severe autism, whose symptoms can’t be ignored?  How could we have just ignored these people in the past?  Where are those misdiagnosed adults with classic autism—those with the same symptoms we see in so many children today?

I’m not talking about [Kristina] Chew’s autistic neighbor who was able to have a conversation with her, or [Paul] Offit’s people who are kind of ‘quirky.’  I mean adults who can’t talk, those in diapers, people who scream for hours and pound hours in walls and who constantly rock back and forth.</blockquote>

Dachel goes on to list several news reports which question the idea of there not being some kind of an epidemic. I disagree with her view and I disagree with the way she has reached her view.

Both Dachel and Harold (and David Kirby come to that) are claiming that epidemiology can be ursurped by individual experience – Dachel’s individual experience with ‘so many young people’ and David’s individual experience with the idea that people are desperately clinging on to some sort of belief in a genetic form of autism.

Now, casting aside the fact that the some of the forms of autism that we know about (Rett Syndrome etc) _are_ solely genetic we have to – as we do with _all_ forms of science, cast aside personal anecdote when making sweeping statements about a very large group of people. What we need to do instead is look at the science. So what does the science say?

Nothing. As far as I can see no firm case has been made that there either is or is not an autism epidemic. Why? Because the science hasn’t been done. It is maybe worth noting that it is the firm opinion of autism experts that a large part of any possible rise is due to:

a) Better diagnostic tools

b) More places at which to recieve a diagnosis

c) More awareness amongst clinicians of autism

d) Earlier diagnosis

e) Diagnostic substitution

f) Widening of diagnostic criteria

Experts such as Eric Fombonne, Roy Richard Grinker and Simon Baron-Cohen have all spoken about these ideas at length. However, that doesn’t make them right. There still seems to be no hard and fast science that says there is an autism epidemic or not.

Forbes on “Stars Vs. Science” once again the autism community looks bad

15 Jan

Forbes Magazine has an article, Stars Vs. Science, From Jenny McCarthy to Tom Cruise, some Hollywood hot shots are leading a war against modern science. The opening paragraph is pretty telling about the tone:

When the medical journal Pediatrics released a consensus report early this year concluding that autistic children do not benefit from special diets, ABC News’ Diane Sawyer knew just whom to call. Jenny McCarthy, former MTV game host, nude model and now mother of an autistic son Evan, enthusiastically denounced the study. “Until doctors start listening to our anecdotal evidence, which is it’s working, it’s going to take so many more years for these kids to get better,” she opined

Or, you can just take a look a the URL–science-jenny-mccarthy-business-healthcare-hollywood-autism.html

Once again, the Autism community takes it on the chin that our representative in the public eye is, well, in a league of her own when it comes to understanding science. Even though the story is about celebrities and science in general, autism plays a big part in the story as a whole. Take a look at the celebrities that were selected for the “slideshow”

Of course, there are Jenny McCarthy and Jim Carrey (click to enlarge and read the caption):

Ms. McCarthy and Mr. Carrey have been trying to shake loose the anti-vaccine image for a while. It doesn’t appear to be working. From the article:

But some of the best-known celebrities use their soap boxes to spread scientifically dubious–and potentially harmful–messages. Jenny McCarthy believes vaccines cause autism, despite numerous studies to the contrary. She campaigns against child vaccines that have been shown to save lives. In 2008, the Centers for Disease Control reported that measles outbreaks had spiked because more parents were deciding to leave their children unvaccinated, thanks to the burgeoning anti-vaccine movement.

Others who made the cut? Arriana Hufffington, of the Huffington Post, (again. click to enlarge):

It is worth reading the caption to that one. Dr. Rahul Parikh is quoted from his Salon.com piece, The Huffington Post is crazy about your health, Why bogus treatments and crackpot medical theories dominate “The Internet Newspaper”.

The quote:

But Huffington has distorted science and facts…fairness and accuracy in health and medicine take a back seat to sensationalism and self-promotion

In his piece, Dr. Parikh had noted the Huffington Post blogs by “David Kirby, Jenny McCarthy’s pediatrician Jay Gordon and detox advocate Dierdre Imus” and also spends a considerable amount of time discussing a piece by Jim Carrey.

The Forbes piece also discusses Oprah Winfrey (click to enlarge):

Once again, autism is prominent in the description given by Forbes.

I’m sure some readers will assume I’m putting this up to embarrass these celbrities. Yeah, like being in Forbes is so low profile that LBRB is going to be the embarrassment for Oprah and company. No, this is just another vent of anger. Anger that the autism community is once again seen by the public as the home to people who are “leading a war against modern science.” Tell me how that helps us advocate.

One notable entry outside of autism is Bill Maher. (click to enlarge)

I bring this up because Forbes notes that Bill Maher has been discussed by “quack busting doctor-blogger David Gorski”. That’s the same guy you can find on Science Based Medicine,

The article does seem to be following a recent trend: they aren’t looking for “balance” by quoting groups from the anti-science side. Instead, qutoes are had by:

William Schaffner, chair of preventive medicine at Vanderbilt School of Medicine:

“These are folks who really don’t have the best information, but because they are vocal and well organized their message has gotten out” [as a result] “around the country pediatricians and their staffs are having to spend more and more time persuading parents to have their kids vaccinated in a timely fashion. It is an enormous problem.”

Stephen Barrett of Quackwatch.org

“Talk shows don’ t pay any attention to whether the advice on their program will kill people. … Producers consider it entertainment,” he says, adding: “Never take health advice from a talk show.”

and

Dr. Paul Offit of the Children’s Hospital of Philadelphia:

Why do celebrities feel the need to spout off on medical or scientific matters? Because they’ve excelled in one field, stars “think they’re an expert in many things,” says the vaccine expert Offit. “That part doesn’t bother me. It’s the part that we listen that bothers me.”

I’m inclined to agree with Dr. Offit. It is the part that we listen to celebrities when they talk about things far outside their expertise that bothers me.

How Anti-Vaccine ‘Science’ Holds Back Credible Research

4 Jan

An expert panel says there’s no rigorous evidence that digestive problems are more common in children with autism compared to other children, or that special diets work, contrary to claims by celebrities and vaccine naysayers.

This is a totally non contentious piece of work. The panel examined all _credible_ research into the subject and decided there simply wasn’t anything available to support the idea of a things such as autistic entercolitis – a faux syndrome pushed by the section of autism anti vaxxers who believe Andrew Wakefields fake science.

Take careful note though of what they are saying:

1) That there’s no credible evidence. Parental anecdote is not credible evidence.
2) Thats autistic children may well have gut issues and that if they do they should be treated medically.
3) That special diets show no eficacy in _treating autism_ .

The issue for me therefore is that when autistic kids have gut issues they need to be treated properly by medical staff. This means making appointments that allow for the special needs of autistic people (either first in the day or last in the day to avoid waits, quiet waiting rooms with appropriate distractions and most of all well trained staff who won’t say caustic things to parents).

A TACA representative is quoted as saying:

“I’m filled with hope after reading this report,” said Estepp of the support group Talk About Curing Autism. “I wish this report would have come out 10 years ago when my son was diagnosed.”

Ironically, TACA who support the work of Andrew Wakefield probably _could_ have had a report like this ten years ago if the work of Andrew Wakeild hadn’t been so heavily promoted by groups like TACA.

The new report says the existence of autistic enterocolitis “has not been established.” Buie said researchers and doctors have avoided digestive issues in autism because of their connection with Wakefield’s disputed research, which set off a backlash against vaccines that continues to this day.

Quite understandably, researchers didn’t want to get involved in a field tainted by a person like Wakefield and his demonstrably false and disproven idea that MMR causes or contributes to autism. If they did, when they came out with science that contradicted Wakefield they would be subject to the same sort of hate crimes currently perpetrated against numerous other scientists such as Paul Offit who has recieved death threats. Who would want that?

Quite simply – if people like Wakefield admit their error and then shut up, more science will be done that will reveal more results groups like TACA may well support.

Autism Clusters Found: areas with high incidence of autistic children

1 Jan

Researchers at the U.C. Davis MIND Institute has discovered regions in the state of California that have notably higher autism incidence. But the story is more complicated, and more sad, than one might think at first. Instead of indications of an “autism epidemic”, these clusters point to the fact that minority and poor children are much less likely to receive autism diagnoses.

I don’t have the paper yet (I’m still trying to find the abstract), but articles in the Woodland Daily Democrat and the San Diego Union-Tribune are reporting the story.

The clusters do not appear to point to environmental causes. Instead…well, read for yourself:

Researchers said that in this investigation the clusters probably are not correlated with specific environmental pollutants or other “exposures.” Rather, they correlate to areas where residents are more educated.

Children with autism diagnoses in these clusters are more likely to be White and have parents with high education levels. Again, a quote:

“In the U.S., the children of older, white and highly educated parents are more likely to receive a diagnosis of autism or autism spectrum disorder. For this reason, the clusters we found are probably not a result of a common environmental exposure. Instead, the differences in education, age and ethnicity of parents comparing births in the cluster versus those outside the cluster were striking enough to explain the clusters of autism cases,” said senior author Irva Hertz-Picciotto.

Kids in the “clusters” are about twice a likely to be diagnosed autistic and kids in nearby areas.

Twice as high.

To the many of us armchair epidemiologists who who have looked closely at the California Department of Developmental Services (CDDS) data, this comes as no surprise.

For me, the most memorable discussion of the autism clusters came from Autism Diva, in her post from July 1997, Malibu and Compton: Compare and Contrast.

Here is a graph from that post:

The South Central Regional Center, in a predominantly non-White, poor area of the Los Angeles basin, had an administrative prevalence of 33 per 10,000. Compare that to Westside Regional Center with a prevelance of 84. Westside is a much more affluent are with a higher proportion of White families.

From the San Diego Union-Tribune:

“There is mounting evidence that at least some of this clustering results from the greater access and utilization of services by those with more years of schooling,” the UC Davis researchers wrote.

Yes, there is a certain “I told you so” moment here. This blog, Autism Diva, Autism Natural Variation, Autism Street and others have been pointing out the apparent autism clusters in the raw CDDS data for years. Long before I started blogging. But the real story isn’t the effect such clusters have on the idea of the “autism epidemic”. Rather, this is a clear indication that we are underserving the disabled in our minority and poor communities. This is just plain wrong.

It is long past time for real autism advocacy organizations to work on increasing awareness and access to services in underserved areas. The autism “clusters” are probably not real. From where I sit, what is real are the “anti–clusters” of undiagnosed autistics, minorities, the poor, and, yes, adults.

CDC report 1 in 110 kids are identified autistic

19 Dec

You’ve probably already heard–the CDC’s estimate of the autism rate was announced as 1% today. This was published in an MMWR came out today, with the new CDC prevalence estimate of 1 in 110. I made some notes on the conference call, but I thought it worthwhile to make a few comments on the document itself.

This is the third in the autism prevalence MMWR’s. The first was
Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, Six Sites, United States, 2000

and

Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002

This new one is titled

Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, United States, 2006

In each they estimate the prevalence for 8 year olds. So, the 2000 study was on children born in 1992 and the 2002 study was on children born in 1994. They found prevalences of 1 in 166 (200) and 1 in 150 (2002), respectively.

The new prevalence is 1 in 110 for 2006 (8 year old children born in 1998). This is a big jump, no doubt. It is worth taking very seriously. Unfortunately, it isn’t as simple as saying, “the number of autistic children has increased”.

As the authors note in the introduction:

Since the early 1990s, the number of persons receiving services for ASDs has increased substantially. However, identifying children for services for autism might not be equivalent to using consistent diagnostic standards to identify persons in the population because services within communities are not available uniformly to all persons with ASDs. For this reason, studies that rely exclusively on single-source administrative datasets (e.g., disability service records or annual reports of special education counts) most likely underestimate ASD prevalence and might not adequately capture changes in the ASD population over time

Most of the states reporting in the ADDM use more than a single source. Most use medical and educational records. Those that use a single source (e.g. Florida) show lower prevalence estimates.

Let’s get back to that 1% estimate. This is a big jump in the prevalence–with the previous prevalence being 1 in 150 (about 0.67%). Yes, it should be taken seriously, but at the same time 1% is not a surprising number. The authors list 5 studies that show a prevalence >1%, using other methods.

Note that this is for the 1998 birth cohort, children born 4 years after those studied in the previous MMWR. I bring this up because the “buzz” before the MMWR was discussing this as the 1996 cohort. The studies are not spaced out evenly in time–2000, 2002, 2006.

Methodology
The methodology is through a record screen, not through direct observation of children:

Children aged 8 years with a notation of an ASD or descriptions consistent with an ASD were identified through screening and abstraction of existing health and education records containing professional assessments of the child’s developmental progress at health-care or education facilities.

If on review of the records, the child is deemed to meet the DSM-IV criteria for autism, he/she is counted. This is a good way to get an estimate, but there is a lot of room for children to fall through the cracks, in my opinion. As such, it is and has always been, an underestimate. In some cases, it is probably a very large underestimate. As will be shown below, there is a big variation by state–a factor of 3. I don’t think anyone really believes that the autism prevalence in Florida, or the prevalence amongst Hispanics is much lower than in other states or other ethnicities.

It is interesting to note that the ADDM network does find a significant number of children whom they (the ADDM) categorize as autistic even though they haven’t been given that diagnosis before. About 23% of the autisistics counted in the 1% value were not identified before the ADDM did their review.

That’s worth repeating–about 23% of 8 year olds identified as autistic were mislabeled as non-autistic by their schools, parents and doctors. That’s an interesting fact for those who claim that autism is easily identified.

The CDC study is not capable of explaining whether part of the increase represents a “real” increase in the number of autistic kids. It certainly can’t go into whether or not any specific proposed cause is valid. However, one can use the data to test hypotheses. This type of study just isn’t capable of making claims about causation.

States Reporting to the ADDM

This new study covers children born in 1994 living in 11 states:
Alabama, Arizona, Colorado, Florida, Georgia, Maryland, Missouri, North Carolina, Pennsylvania, South Carolina, and Wisconsin.

Note that this is different from the last MMWR, which looked at kids born 2 years earlier (1996) and included sites in:
Alabama, Arizona, Arkansas, Colorado, Georgia, Maryland, Missouri, New Jersey, North Carolina, Pennsylvania, South Carolina, Utah, West Virginia , and Wisconsin.

The new study added Florida, but took out Arkansas, New Jersey, Utah and West Virginia. These changes do make it more difficult to compare the prevalence data. They do not explain the increase. By that I mean, it isn’t as though the low prevalence states were removed from the previous MMWR study and high prevalence states were added.

I would have been very interested what happened to the prevalence in New Jersey. The last two MMWRs had New Jersey at about 1%. A good comparison would be if that state had the same autism prevalence or a higher value.

Prevalence by state

Data in Table 2 from the MMWR. Data from 11 states were reported. The prevalence ranged from 4.2 (Florida) to 12.1 per 1,000 (Missouri and Arizona). That’s a big spread, a factor of 3. The highest prevalence was for males in Missouri–19.1 per 1,000 (1.9%, or 1 in 52).

There was some variation in the male:female ratio, from 3.2 (Alabama) to 7.6 (Florida). Again, this shows that there is a big variation by state in how autistics are identified.

Variation by ethnicity.

There is a large difference in the prevalence by ethnicity. This also varies by state. For example, there is a 9.4 White-to-Hispanic ratio in Alabama, but the same ratio is only 0.7 in Florida. In general, Whites are identified more often than either Hispanic or African Americans.

We have a lot of work to do in making sure minorities are correctly identified and getting appropriate services and supports.

Earlier age of identification.

The median age of autism diagnosis is about 4.5 years. This is a big jump down from the 2002 data, which had a median of 5 years. That is a good thing.

This is worth a couple of comments. First, there is still room for improvement. Most of the children had development concerns noted in their records before age 2. The obvious question is whether these children could have been identified sooner. This was one comment stressed by the CDC in the conference call.

It is also worth noting that autism isn’t “obvious” or “easy” to identify autistics. 4.5 years old is the median age.

It is also worth noting that the big jump down in median age of identification is a very clear indicator that, yes, people are getting better at identifying and diagnosing autistics.

The range of age of identification is as low as 2 months (!) to as high as 106 months. The low end is pretty remarkable. I don’t think there are any tests qualified for such young children. At the high end, that is nearly 9 years old. Again, this goes to the idea that autism is not obvious.

One complaint that is always used in these discussions is “what, are you saying that no one noticed these kids?”. No. They likely had other diagnoses or that some concerns were noted about development for them.

Number of kids receiving special education services.

Table 3 of the report is quite interesting. They show for six states what fraction of identified autistic kids are getting special education, and under what primary label.

In Colorado, 76% of autistic students are in special education, while in Arizona it is 96%. Is there really such a big difference in the needs of these kids from state to state?

Colorado has only 34% of the autistic students under the primary category of autism. Compare that to Maryland with 76%. Again, it is pretty clear that there is a lot of variation in how special education services are granted by state.

Cognitive Functioning

From the MMWR:

Data on cognitive functioning are reported for sites having IQ test scores available on at least 70% of children who met the ASD case definition. The proportion of children with ASDs who had test scores indicating cognitive impairment (IQ ?70) ranged from 29.3% in Colorado to 51.2% in South Carolina (average: 41%)

I find this information rather interesting. Most of the children with IQ data were not cognitively impaired.

2004 Prevalence data.

There was also a small appendix released today, with information on 2004 prevalence data (note that the study noted above is for 2006). Those data show a prevalence of 8 in 1,000, or 1 in 125. This is a “smaller scale effort”

It is interesting to put the data from the various studies into a timeline:

2000 originally 1 in 166, revised to 1 in 150 (6.7 per 1,000) (1992 cohort)
2002 1 in 152 (6.6 per 1,000) (1994 cohort)
2004 1 in 125 (8.0 per 1,000) (1996 cohort)
2006 1 in 110 (9.0 per 1,000) (1998 cohort)

If you recall, David Kirby claimed the new CDC data would support his hypothesis that the Hepatitis B vaccine caused an upsurge. Mr. Kirby mistakenly assumed that the 1% figure would be for the 1996 birth cohort. Mr Kirby then correlated the jump from 1 in 150 to 1 in 100 with the uptake of HepB vaccination in that birth cohort. He stated (incorrectly, we now know):

But according to the CDC’s National Immunization Survey (which also includes parental telephone interviews), only 8% of infant children received the Hep B vaccine in 1992, when that birth cohort showed an ASD rate of 67-per-10,000.

By 1994, the number of children receiving Hep B vaccine had reached just 27% — and the cohort showed a similar ASD rate.

But the Hep B coverage rate had risen to 82% by 1996, when that cohort’s ASD rate rose to around 100-per-10,000.

So, there was a smaller jump that correlates with the uptake in HepB in the 1994 cohort–the rate increased from 0.66% (1994) to 0.80% (1996). Then, two years later, there is a similar jump, from 0.80% (1996) to 0.90%. But, this time without the big increase in HepB vaccination.

Not so dramatic a story with the real data. Just a constant rise.

Final words

I hope this highlights some of the information in the study. I wish I had the time to spend to make this summary a bit easier of a read. But, there are other posts to write. Like one talking about Autism Speaks and the way they are capitalizing on the new prevalence numbers with a very deceptive graph.

CDC conference call: 1% autism prevalence.

18 Dec

The CDC conference call was today. This call was about the new MMWR (Morbidity and Mortality Weekly Reports) that is due out. (The report is here, with an appendix here).

Dr. Catherine Rice, lead author was there. She gave the intro.

Report is released today. “Significant public health issue”. We need a coordinated and strong response to improve the lives of people with ASD.

2006–identified prevalence to be about 1% of 8 year olds. Representing about 8% of 8 year olds. 4.2 to 12.1 per 1000, average of 9.0 per 1000 (1 in 80 to 1 in 240, average on in 110)

The ADDM network collects data from multiple sites. All showed increases in identified ASD prevalence. The increases ranged from 27% to 95%, with an average of 57%

Identified ASD prevalence increased across all categories. Increases 55% for White, 90% for Hispanic (missed African American)

The autism prevalence is 4-5 times higher for boys. Prevalence numbers are 1 in 70 boys, 1 in 315 girls (average). The increases were 60% for boys, 48% for girls.

There were between 13-35% of the children studied who had a report of regression or loss of skills by age 2.

For most children, concerns were noted in the records were noted before age 2, but average identification age is about 4.5 years of age.

No single factor explains increase. Better detection is a factor (girls, Hispanics, people without cognitive impairment were given as examples of improved detection). True increase can not be ruled out.

CDC has new studies (such as SEED) to look into causes of autism. CDC is also represented on the IACC.

Some of the increase is due to better record keeping. One question from WebMD was about a possible true increase. CDC responded about the various factors involved, but a true increase can not be ruled out.

Boston Globe: (1) why are there broad “incidence” rates across sites (2) what about this study in terms of vaccinations.

Rage is 4.2 to 12.1 per 1,000. 7 sites were much more closely grouped around 10 per 1,000 (1%). There is a variation in the types of records available. The CDC representative states the low numbers are likely a low estimate.

Since autism is a behaviorally diagnosed condition, there will be variation in prevalence by region.

This study is not designed to look at risk factors, including vaccine. The children in this study were born in 1998, so these children were vaccinated with thimerosal.

NY Times: Range of spectrum. How well does this study catch the more “mild” end of the spectrum like PDD-NOS and Aspergers.

This went by fast, but it sounded like the CDC said that autism and PDD-NOS were more represented than Asperger syndrome.

CDC: The researchers do not actually test the children, but work on a review of existing records.

Pediatric news: What is the take home message for pediatricians?

CDC: Since there was usually an indication of delay before the age of 2, but identification wasn’t made until (on average) 4.5, pediatricians should be proactive in referring children for further evaluation.

In response to one question on intellectual disability: there is an overlap between autism and intellectual disability. Old stats showed 75% of autistics had Intellectual disability. Now it is more like 41%. This points to the idea that either the nature of autism is changing or that identification methods are changing, catching more autistics without intellectual disability.

CNN question–how much did the average age of diagnosis change?

CDC: 5 months. Children were identified on average 5 months sooner in these data than in the previous study.

Note: I made significant updates to this post since it was first published.

Is CDC to announce 1 in 100 autism rate?

18 Dec

And, if so, is SafeMinds trying to play games with Google news to get their story on top?

What happens when you are the first to break a big news story, at least in terms of Google News? Well, quite often your story gets to be the top story.

On Wednesday, SafeMinds put a piece on the Age of Autism Blog CDC Study Expected to Announce 1 in 100 Autism Rate—A Startling 50% Jump in Just Two Years. Evidence Points to an Environmental Trigger. Then, on Thursday, basically the same piece reappeared as CDC Brings Bad Tidings: 40,000 Children Diagnosed With Autism In This Year Alone. They open with:

Atlanta, GA – A study to be released Friday by the Autism and Developmental Disabilities Monitoring (ADDM) Network of the Centers for Disease Control (CDC) is expected to report that autism prevalence has reached the epidemic rate of 1 in 100 children.

Usually when a new study comes out, journals or the CDC will release some information to the press on the condition that they respect the “embargo”. That is, everyone is supposed to wait until the same time before going public with the information.

There are advantages to not playing by the rules. When you get your story out first, especially on a big story, you can try to influence other stories and you can ride the top of the wave of press coverage.

Take a look at Google News for a big story and often there is a “lead” or top story. No one wants to be burried in the mass of stories. Get your story out first, and, hey, maybe you will be the top story.

That would be a big public relations coup for SafeMinds. At the same time, we have to ask: if SafeMinds is correct, are they breaking an embargo? The release of information about a recent Pediatrics study claiming a 1% autism prevalence caused some bad press for the autism community (also here and here).

Let’s watch. Will SafeMinds put out yet another post Friday morning, just in case? Will they succeed in getting a prominent spot for their pieces? Will journalists covering the story contact SafeMinds or use their material for stories?

The CDC autism prevalence estimates are made via MMWR’s (Morbidity and Mortality Weekly Reports). The previous report was from 2007, using data collected in 2002, with the 1 in 150 prevalence estimate that has been commonly quoted.

If you recall, the existence of the upcoming MMWR was leaked a few months ago. Lee Grossman, president of the Autism Society of America, somehow found out and talked publicly, and David Kirby blogged it. Of course, Mr. Kirby found a way (or was told a way) to include this as evidence of vaccines causing autism. The argument being that the Hepatitis B vaccine was given to those kids. It didn’t matter that the other dataset he was discussing in that same post, from the National Children’s Health Survey, didn’t support the idea at all. SafeMinds seems to be making the same arguments in their blog pieces as well.

If SafeMinds is correct and the announcement comes out Friday, expect updates on the CDC autism data page, and the CDC autism page. But, hey, expect about 5,000 news articles too.

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