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Andrew Wakefield gives NBC “talking points”

11 Sep

Dr. Wakefield “took issue” with a recent Dateline episode discussing him and his work. Thoughtful House (his clinic) has offered Dateline some talking points to, I gather, give “the full story” that Dateline supposedly missed.

Since there is next to zero chance that Dateline will act on them, I thought I would take a look at the talking points:

A. There has been extensive replication of the finding of bowel disease in children with autism (ASD) from five different countries. These findings have been published in peer-reviewed journals or presented at scientific meetings. It is therefore incorrect and misleading of Matt Lauer to have stated that every aspect of my original hypothesis has been disproved. On the contrary, the main findings of the original Lancet paper, that is, bowel disease in autistic children, has been repeatedly confirmed. This obvious inaccuracy requires clarification by NBC.

One of my many failings is that I am a sloppy writer and, yet, I key in on imprecise language in the work of others. Case in point:

“On the contrary, the main findings of the original Lancet paper, that is, bowel disease in autistic children, has been repeatedly confirmed. ”

“…the main point of the Lancet paper, bowel disease in autistic children…”

Very imprecise. What about bowel disease in autistic children is the finding of the Lancet article that Dr. Wakefield wants us to know? The statement is so vague that all we are left with is the fact that some autistic children have bowel disease.

This is misdirection on Dr. Wakefield’s part. It isn’t even good misdirection. The Dateline story wasn’t “the career of Andrew Wakefield, what he got right and wrong”. It was about the assertions that MMR cause autism.

Dr. Wakefield makes it appear that this statement was Matt Lauer’s. It is a fine point, but Matt Lauer didn’t state that “…every aspect of my original hypothesis has been disproved”. The statement was from the American Academy of Pediatrics, which Matt Lauer quoted with attribution.

It’s worth recalling what the Lancet paper stated. The concluding paragraph of the 1998 Lancet article was:

We have identified a chronic enterocolitis in children that may be related to neuropsychiatric dysfunction. In most cases, onset of symptoms was after measles, mumps, and rubella immunisation. Further investigations are needed to examine this syndrome and its possible relation to this vaccine.

Had Dr. Wakefield himself distanced himself from the MMR-causation theory in the last 10 years, even a little, I’d think it reasonable for him to emphasize the the idea that he brought to light GI disturbances in autistic kids. But he hasn’t. It isn’t what the Dateline story was about.

The big question, if he thought this was important, why didn’t Dr. Wakefield himself emphasize that in the interview?

Dr. Wakefield’s second point:

B. The shortcomings and the flaws of the studies quoted by Dr. Offit, claiming to disprove an association between vaccines and autism, were not discussed in the program. In my interview with Mr. Lauer I took as an example a paper from Dr. DeStefano from the CDC claiming to exonerate MMR that actually showed that a younger age of vaccination with MMR is associated with a greater risk of autism. This study confirms the association and has been falsely portrayed as vindicating the vaccine. This should have been included in order to provide balance to the program.

Can someone tell me what DeStefano paper and what analysis he is talking about?

C. Reference was made to an autistic child in the vaccine court whose claim for MMR damage was overturned by the judge. No reference was made to the successful vaccine court case on behalf of the child Bailey Banks, coming just one week after the unsuccessful claim described by Mr. Lauer, in which the judge ruled that MMR vaccine can cause autism. Therefore, in the view of vaccine court, it is not a question of whether or not MMR can cause autism, but rather how many children are affected.

The case referred to in the Dateline episode was that of Michelle Cedillo. Her’s was the first “test case” to be heard by the Autism Omnibus Proceeding.

Her case was first heard by a “special master”, who denied compensation. The case then was appealed, and the judge didn’t “overturn” anything. The judge upheld the original decision.

The Bailey Banks case is one that gets debated a lot on the net. Rather than go into that again, let’s ask: how does this relate to Dr. Wakefield’s research? Perhaps I missed it as I did some very quick searches, but I didn’t find anything in the Bailey Banks decision that had anything to do with digestion/inflamation/enterocolitis/constipation/diarrhea… I think you get the idea–the case has nothing to do with Dr. Wakefield’s ideas about autism and the gut.

I.e. Wakefield’s point C is another diversionary tactic.

D. There was a complete absence of comment on the lack of any adequate safety studies of childhood vaccines and the vaccine schedule in particular. There was no mention of the admission by vaccine regulators that there is no data on the long-term safety of vaccines, the chronic disease burden caused by vaccines, and the likely potentially harmful interactions between various vaccines in the routine schedule.

Have you heard the phrase “diversionary tactic” too often yet? What does any of this have to do with whether Dr. Wakefield’s research? This is a favored diversion in online discussions of vaccines/autism. When people run out of real ammunition (and they do quickly), switch to trying to debate general safety of vaccines–and it almost worked. Instead of addressing some of your comments, I’ll move on to your fifth point:

E. Undue credibility was given to Brian Deer, a discredited freelancejournalist, whose false reporting has caused so much misunderstanding and damage to children through the misrepresentation of the doctors and parents who were seeking answers to the vaccine-autism question. Deer has repeatedly misled the public and the medical profession and has been unable to respond to clear evidence of his false reporting in the Sunday Times through the UK’s Press Complaints Commission.

Nice slam, there, Dr. Wakefield. Given the sloppy nature of your previous comments, I am impressed that you pulled this together so well.

You make it seem like it is accepted that Brian Deer is “discredited”. I guess if you don’t get out of Thoughtful House or autism-parent conventions, you might think that.

The “unable to respond…” bit is pretty classic. The Press Complaints Commission isn’t hearing the complaint until after your own GMC hearing, correct? So, I guess he has been unable to respond at the PCC. But, did that really stop him from responding? I seem to recall a pretty sharp worded response that Orac hosted on Respectful Insolence.

Didn’t you, Dr. Wakefield, bring that complaint to the PCC? If so, nice job leaving out the fact. It would come across quite differently had you stated: “…and has yet been unable to respond to clear my claims of his false reporting in the Sunday Times through the UK’s Press Complaints Commission.”

F. It was not disclosed that I have repeatedly invited Dr. Offit to take part in public debate on the safety of MMR vaccine and the false and misleading claims that he has made in the media and his book. He has refused to accept this invitation and has continued to hide from an open and honest debate.

Why would NBC waste time on this? Was it pertinent to the discussion? Answer: no.

I think they did you a favor by not mentioning it. No one looks good with the “So and So won’t debate me” argument. They just don’t. The “please debate me” argument is a staple of the crank. I doubt you wish to appear to be in that category, do you?

Academics “debate” in the literature, not on some stage. If you want to debate Dr. Offit, come up with some good research. Publish it.

Alternatively, if you want to see how a Wakefield/Offit debate comes out, read “autism’s false prophets”. If that is “hiding”, he hasn’t done a very good job of it.

G. NBC alluded briefly to the fact that Richard Horton, editor of The Lancet, was informed of my participation as a medical expert in the MMR litigation almost one year before publication of the Lancet paper in 1998. NBC failed to clarify that when Horton was challenged to respond to the fact that when he so enthusiastically denounced me and the paper in 2004 the Lancet staff was already fully aware of the facts and at that time did not consider them to be relevant. Horton refused to be interviewed by NBC and the interview segment shown was from 2004. This refusal is in sharp contrast to his willingness to denounce me in the media in 2004. NBC also failed to mention that in the light of these facts Horton has been reported to UK’s General Medical Council on an allegation of perjury.

Even if true, this is just more diversions. If you thought it important enough to fax all this information to the Lancet, why didn’t you include a conflict of interest statement in the article itself? The referees would have appreciated that, I believe. Was there any mention of potential conflicts of interest in your cover letter to The Lancet when you submitted the paper? Or in the cover letter for your acceptance? All of those were places where you should have made such statements.

H. It was unfortunate that NBC, having stated their determination to resist external pressure to distort the balance of the program, yielded to such pressure from the American Academy of Pediatrics, allowing them the final word in the program while denying representation from the National Autism Association who put forward to NBC a rational and well reasoned call for further science to resolve this very real issue.

I’m sorry, but are you seriously putting he “National Autism Association” on equal footing with the American Academy of Pediatrics? How many members does the NAA have? (a lot less than the AAP) What is the name of their journal (they don’t have one) What is the impact factor of their journal? (Pediatrics is a very well respected journal).

Given the NAA’s recent childish antics with their attempted slime job against Dr. Offit (which you, Dr. Wakefield, participated in), I think that Dateline has been proven correct for not airing their comments.

I. Dr. Offit cited a large population study of autism and MMR from Denmark in support of his claim to ‘certainty that there is no link.’ This study was so flawed that it was rejected from consideration by the gold standard scientific review by the highly influential Cochrane Collaboration. Dr. Offitt, who is not an epidemiologist, was clearly at a loss to understand the study’s fatal flaws.

“Dr. Offitt, who is not an epidemiologist…” What’s up with that comment? I’m sorry, is Dr. Wakefield an epidemiologist? Answer: no. Do you have to be an epidemiologist to understand the study or it’s strengths or flaws? No.

What fatal flaws is Dr. Wakefield referring to? The big Danish study was by Madsen, et al.. The Cochrane Review lists this study as one of the “cohort studies included in the review”. Not “rejected from consideration”.

That aside, I have the Cochrane Review “Vaccines for measles, mumps and rubella in children (Review)” open. The version I have open is noted: “This is a reprint of a Cochrane review, prepared and maintained by The Cochrane Collaboration and published in The Cochrane Library 2009, Issue 3”, so I think it is the most recent.

I guess if the Cochrane review is “highly influential” and the “gold standard” it would make sense to see what they think of the autism/MMR hypothesis, eh? The review states:

No credible evidence of an involvement of MMR with either autism or Crohn’s disease was found.

Was this because they didn’t know about Dr. Wakefield’s work? Hardly. Four of Dr. Wakefield’s papers were listed. All were listed in the “excluded studies” section.

So where does this leave us? We have, what, nine talking points which are mostly diversions or misrepresentations. Anyone wonder why I don’t think Matt Lauer will be responding to these soon?

How Much Longer?

9 Sep

The National Autism Association has a campaign afoot to raise awareness with the catch-phrase “how much longer”.

As in these quotes from their campaign:

“FDA, HOW MUCH LONGER WILL YOU APPROVE VACCINES THAT AREN’T NEARLY AS SAFE AS THEY COULD BE?”

Or

“HOW MUCH LONGER, NIH, before you adequately fund environmental research?”

I have a question:

How much longer, NAA, before you act like a reasonable member of the autism communities? (substitute Generation Rescue or SafeMinds for NAA, they are all basically the same group).

The NAA quote about NIH shows a lot about the NAA’s intent. “Adequately fund environmental research”. A lot of money is going to environmental research for autism causation at NIH. A lot. But, until it includes vaccine-causation, no amount is going to be considered “adequate” to the NAA.

NIH and most of the medical community doesn’t think that there is a good reason to do vaccine-causation research. But that isn’t the reason why groups like NIH don’t fund research. Let’s face it, NIH have an entire center devoted to spending on money that most of the medical community considers a waste.

The NAA would like to place the blame on everyone. Everyone else, that is. It’s a vast conspiracy, funded by Pharma dollars, with everyone afraid to admit the truth about the damage they caused. Do I have that right, NAA?

The real problem, NAA/Safe-Minds/Generation Rescue, is that you are your own worst enemy.

Ask yourselves a very simple question: if NIH is willing to spend money on projects with little hope of success, if NIH is willing to spend money on questions where the general expectation is that the answer will be no (remember that chelation study?), if they are willing to do that, why not spend money on a vaccine-causation project?

To answer that, you have to ask, what is the cost of a vaccine-causation project?

The real cost isn’t calculated in dollars. The real cost in is the damage to public health that such a study would bring. Yes, funding a do-vaccines-cause-autism project would hurt public health.

How can I say that? Because you guys at NAA (and sister orgs) would use the fact that NIH has funded such a project to attack vaccines. The entire time from the approval of the funds to the time the study results were published, you would be claiming “See, the government thinks vaccines are causing the autism epidemic”. What happens when the project is done? If the research doesn’t agree with your position, you will reject it. That is your clear track record.

Besides, what quality independent researcher would take on such a project? Anyone able to do such a study is is likely smart enough to realize that he/she would be hounded for the rest of his/her life if he/she doesn’t publish results that agree with your preset expectations.

You guys are stuck in the past. A past where you could say “vaccines caused an autism epidemic” and people listened. It’s time to listen to the people who support you. Really listen. Listen and realize that just because someone is supporting you doesn’t mean that he/she supports everything you say. Case in point: Dr. Bernadine Healy. Does she say there has been an epidemic of vaccine-induced autism? Does she say the epidemiology is junk? No. She says there may be small groups. Groups too small to be detected in the epidemiology that’s been done. That’s really, really small, by the way.

Get it? Even your supporters say you haven’t proven anything and that at most you represent a small fraction of the autistic population. You’ve been able to “wag the dog” for a long time, but that time is over. It’s time to realize that at most you would be a small part of the autism communities. It’s time to realize that the autism communities are part of a larger disability community.

If this seems too complicated, here are a few simple steps you can take to rebuild your credibility:

1) admit that thimerosal did not cause an “autism epidemic”
2) admit that MMR did not cause an “autism epidemic”
3) stop discounting all science that disagrees with you.
4) stop smearing people who disagree with you.
5) stop creating misleading faux research.
6) stop trying to discredit fine American institutions.
7) stop denying the existence of a large number of adult autistics.

Oh there’s more. A lot more.

As I said above, NIH is willing to fund research that constituents want even when it is very likely to be fruitless. But you have made it expensive to perform from a public health perspective and won’t accept any answer except the one you want.

How much longer until you get vaccine-autism research? You tell us. You are the ones in the way. Your “how much longer” campaign probably just set you back at least a year.

You probably see this as harsh. In reality it is probably the best advice you have been given all day.

Dr. Bernadine Healy talks about vaccines and autism…or does she?

1 Sep

Vaccines and autism: publicity of the topic just got a “shot in the arm” this weekend with a story on Dateline. As part of the story, Dr. Bernadine Healy was interviewed.

Dr. Healy has called for more research into the proposed vaccine-autism link. She has some good credentials (former head of the National Institutes of Health)

Take a look at what she had to say.

I really want people to actually watch her before reading my opinions. I’m very interested in what other people see, untainted by my opinion.

Did you watch? OK, go ahead.

My view: She sounds like a politician on a stump speech. She makes her “constituency” think that she made a commitment when, in fact, she never does.

“…in the area of autism, and in the area of vaccines, there are many many questions that need to be answered and they need a broad base of science.”

Does she ever say, “we need to research vaccines as a cause of autism”? No. She doesn’t. She mentions autism and she mentions vaccines, but doesn’t really put them together.

Another statement, in talking about vaccine safety:

“…it is about understanding if something is happening that we need to address in a small subset”

Her words are very imprecise, letting the reader interpret as he/she will.

“small subset”. Some will hear that and think, “children with autism, that’s the small subset” and the “take away” message will be, “she supports the idea of vaccines causing an epidemic of autism”. It’s possible that “small subset” means a small subset of autistics. In other words, she might be accepting the data that shows vaccines haven’t caused an epidemic of autism. It’s possible that “small subset” is the very small subset of people who are injured by vaccines, some of whom are autistic and some of whom are not. In which case, what she said isn’t controversial at all.

We just can’t tell what she meant from what she said.

And, yet, many would could come away thinking that her statement supports their side.

Perfect politician speak. Very reminiscent of the style Sentator McCain used in his comments courting the autism vote in the last U.S. presidential election.

Dr. Healy has not always been so cautious with her words. When she first appeared on the autism scene, she made accusations against the Institute of Medicine. She also made statements about young children having no risk for Hepatitis B, questioning the need for that vaccine. There are more examples, but these two serve the point: when we make specific statements, we run the risk of being wrong.

The rest of the interview was mostly “mom and apple pie” statements about good communication with parents, pediatricians and the American Academy of Pediatrics.

She also talks about vaccines and how there are “questions that must be addressed”. See what I mean about how that sounds like a politician? What questions must be addressed? The listener is likely to fill in the blank and feel that Dr. Healy made a statement supporting, say, questions about vaccines potentially causing autism.

Contrast Dr. Healy’s non-statements to the statement by the American Academy of Pediatrics on the Dateline website.

August 2009

Statement from the American Academy of Pediatrics to “Dateline”

The immunization schedule is considered the ideal schedule for healthy children. It is designed to stimulate children’s immune systems so they will not suffer illness, disability and death from vaccine-preventable diseases. The recommended immunization schedule is based on the latest scientific research. There is no scientific evidence to support the safety or effectiveness of alternative schedules. Delaying vaccines leaves babies unprotected when they are most vulnerable to vaccine-preventable diseases such as hepatitis B (a liver infection), rotavirus (severe diarrheal disease), whooping cough and bacterial meningitis.

Autism is a devastating, poorly understood neurodevelopmental condition. It is upsetting for families not to know what caused their child’s autism. The American Academy of Pediatrics (AAP) supports additional research to investigate genetic and environmental factors that may affect the developing brain. While it is likely that there are many environmental factors that influence the development of autism, vaccines are not the cause of autism. We know this because many careful and repeated studies show no link between vaccines and autism. Specifically, numerous studies have refuted Andrew Wakefield’s theory that MMR vaccine is linked to bowel disorders and autism. Every aspect of Dr. Wakefield’s theory has been disproven.

The AAP wants parents to have complete, science-based information so they can make the best decision for their child about immunization. The AAP urges parents who have questions about vaccines to talk to their pediatrician. For more information, visit www.aap.org.

See the difference between Dr. Healy’s interview and the AAP statement? The AAP said something concrete. They said that Wakefield’s theory has been disproven. They say that they support additional research into genetic and environmental factors.

Having done so, the AAP will almost certainly have their message picked apart and misinterpreted.

For example, one common attack I would expect to see is “if they don’t know what causes autism, how can they say that vaccines didn’t cause an autism epidemic?” This comes up enough that I have a handy counterexample: I, for one, feel safe in not applying research funding into the “refrigerator mother” theory, even though we don’t know what causes autism. I will go out on a limb and state that it is likely that most autism parents and autistics would agree with me on that. See, one can reject some ideas even without a complete understanding of autism.

What I really expect is for some people to jump on the “environmental factors” statement by the AAP. David Kirby, for one, has made a mini-career out of collecting such statements. Each time it is evidence of a “new” position on the possibility of environmental causes of autism by one group or another, Mr. Kirby jumps on it and adds it to his list.

I guess this hasn’t happened with this statement by the AAP because because this isn’t a new position. For example, this past May they stated, “A complex collection of variables, both genetic and environmental, have been associated with the development of autism spectrum disorders (ASD).”. This statement is a part of the FAQ (frequently asked questions) on the AAP autism website.

I was amazed then that Mr. Kirby didn’t extrapolate wildly on the “environmental” statements by the AAP.He tends to leave it implied that anyone who accepts “environmental causes” of autism is referring to events that happen to young children and not, as is most often the case in the studied environmental risk factors, prenatal events. Mr. Kirby tends to imply that anyone who agrees that there are environmental risk factors likely supports his contention that mercury causes autism.

In other words, he tends to claim support for his ideas even where there is none.

But, enough about Mr. Kirby. At least he sometimes makes definitive statements. Yes, he likes to hide behind the cloak of “what if” statements that are supposed to be “sparking a national debate”. But, he can and does occasionally make hard statements, unlike Dr. Healy in her interview.


The CDC also submitted a statement to Dateline. It too has concrete statements:

August 26, 2009

NBC News
30 Rockefeller Plaza
Suite 325W-1
NY, NY 10112

CDC Statement on Vaccine Safety, Thimerosal and Autism

At the Centers for Disease Control and Prevention we understand that autism and autism spectrum disorders place a heavy burden on many families.

Despite compelling scientific evidence against a link between vaccines and autism, some parents wonder if vaccines could have caused their children to develop autism. The suggestion that MMR (Measles, Mumps and Rubella) vaccine could be related to autism was initially raised in a 1998 article by Andrew Wakefield and colleagues. Several subsequent studies by independent researchers, however, have not found an association. A study that included the same laboratory that was involved in Wakefield’s original studies was not able to replicate the original findings. Concerns have been raised about possible biases in the study by Wakefield, and 10 of the coauthors of the 1998 article have published a formal retraction of the article’s conclusions. A review by the Institute of Medicine in 2004 concluded that the evidence indicates that MMR vaccine does not cause autism.

In early 2000, concerns were raised that thimerosal, a mercury-based preservative that had been used in some childhood vaccines, could cause autism. Numerous studies have found no association between thimerosal exposure and autism. Since thimerosal was removed from all U.S. childhood vaccines by 2002 (with the exception of the flu vaccine), we have not seen a decline in children being identified with autism, indicating that thimerosal is unlikely to be related to autism.

The CDC supports research to better understand the causes of autism and to develop more effective treatments. Early intervention is critical and research is our best hope for understanding the causes of autism. Through collaborations with partners in government, research centers, and the public, CDC is focusing on three areas: 1) understanding the frequency and trends of autism spectrum disorders, 2) advancing research in the search for causes and 3) improving early detection and diagnosis.

CDC places a high priority on vaccine safety and the integrity and credibility of our vaccine safety research. CDC, along with other federal agencies, is committed to assuring the safety of vaccines through rigorous pre-licensure trials and post-licensure monitoring. This commitment not only stems from our scientific and medical dedication, it is also personal–for most of us who work at CDC are also parents and grandparents. We too, are concerned about the health and safety of children.

Frank Destefano, M.D., M.P.H. Edwin Trevathan, M.D., M.P.H.
Director Director

Immunization Safety Office, CDC National Center on Birth Defects
& Developmental Disabilities, CDC

Again, unlike Dr. Healy, the CDC makes definitive statements. On statement I am surprised I haven’t read people pointing out the “burden” statement.

I also am surprised I haven’t heard people jump on some other statements. Specifically, “understanding the frequency and trends of autism spectrum disorders”. That’s a perfect opening for people to claim that the CDC believes there could be a vaccine-caused epidemic of autism.

Most people tend to just equate the idea of the autism rate increasing with vaccines and or mercury. So, if anyone were to say, “so-and-so thinks the autism rate may be increasing”, they usually are trying to imply, “so-and-so thinks that vaccines cause autism”.

Well, guess what, the CDC does think it is possible that the autism rate is increasing. That’s why they are monitoring the autism rate.

But, bringing this back to Dr. Healy. I am on the one hand pleased that she didn’t make her false statements about the IOM or other unfounded comments. On the other hand, I would hope that if MSNBC thought it valuable to interview her, they would have found it valuable to get her to actually say something concrete.

It is interesting to look at the blog post on the Age of Autism blog about this. They show the video, with no commentary other than the title: “Dr. Bernadine Healy Implies Hubris on Part of Docs Who Deny Vaccine Autism Possibility”.

Even they couldn’t pull a concrete conclusion out of this interview. The strongest statement they are left with is “implies hubris”.

If AoA can’t spin this interview into a strong statement, it’s pretty clearly a fairly empty interview.

Unscientific Americans

25 Aug

In Saturday’s Los Angeles Times, Lori Kozlowski talked to Chris Mooney in an article headed ‘Bringing science back into America’s sphere.’ The piece is about a book that Chris has co-authored with Sheril Kirshenbaum “Unscientific America: How Scientific Illiteracy Threatens Our Future.” It provoked such a lot of comments that they set up a blog so everyone could have their say.

Needless to say, as one of the book’s targets is the vaccine/autism camp and Chris mentions Age of Autism, that nest of anti-vaxers has dominated the comments with an orchestrated campaign. Here is my own attempt to stem the tide.

Those who have argued for a link between vaccines and autism adopt two contradictory positions. On the one hand we have those who point to the epidemiological studies as evidence of an autism epidemic whose growth is supposed to coincide with changes in the United States schedule for early childhood vaccinations. But when population studies fail to find a connection between vaccines and autism we get a different argument. Apparently there is a subset of genetically susceptible children that is too small to show up in population studies of vaccine safety. We have yet to hear a convincing explanation for this alleged genetic susceptibility to vaccine induced autism. But the parents who subscribe to this view are all convinced that, whatever it is, their child must have it.

It is difficult to see how this latter group could be persuaded to abandon their belief that that in their individual cases correlation does indeed equal causation. But I am at a loss to understand why they are willing to make common cause with the autism epidemicists, who are clearly and demonstrably wrong.

Regarding prevalence we have a very good idea why prevalence used to be 4 in 10000 and is now approaching 100 in 10000. In 1966 Victor Lotter carried out one of the earliest epidemiological studies in the county of Middlesex in the UK. He used a very narrow definition of autism in which only children who actively avoided human contact and engaged in elaborate repetitive behaviour qualified for diagnosis. When his students Lorna Wing and Judith Gould repeated the study in 1979 they found a similar rate of between 4 and 5 in 10000. However they also discovered a larger group who also engaged in repetitive behaviour but did not avoid human contact. However they did show difficulties in social communication and interaction. Wing and Gould defined ther problems within the triad of impairments, which also explained the aloof behaviour of the more typical Kanner type autistics. The newly identified members of the autistic spectrum numbered around 15 in 10000. Thus a simple broadening of the criteria lifted the numbers from 4 to 20 in 10000.

Lotter, Wing and Gould had all studied children excluded from mainstream education. In 1993 Stephan Ehlers and Christopher Gillberg went looking for children with the triad of impairments in mainstream education in the Swedish city of Gothenburg. They found a rate of 71 in 10000 for children with an IQ greater than 70. The children who were identified were known by their teachers to be having social and/or educational problems but the nature of their difficulties had not been recognised prior to the study.

So, as early as 1994, on the basis of epidemiological studies by Wing and Gould (1979) and Ehlers and Gillberg (1993) it was apparent that autism in all its manifestations including the classic Kanner type and the Asperger type affected at least 91 in 10000. The National Autistic Society in the UK issued a fact sheet to that effect. The modern version is available on our website.

In 15 years the figure for all autistic spectrum disorders in the UK has moved from 91 in 10000 to 116 in 10000 (Baird et al 2006). Thus it has remained flat at around 1 per cent for the whole period of the so-called autism epidemic. And that 1 percent represents the whole spectrum with perhaps a fifth to a quarter consisting of people with recognizable learning difficulties that are moderate or severe. The rest are more able.

I see no reason to doubt that the CDC estimate of 1 in 150 and the figures from recent studies that more closely approach the overall prevalence figures from the UK contain within them similar proportions of more and less able individuals. It is a shame that it has taken health and education services on both sides of the Atlantic so long to catch up with the true prevalence of autism amongst our children and begin to tailor services to meet their needs.

That still leaves those more able adults, often living a life less ordinary without the benefit of diagnosis and support, but still experiencing difficulties in their daily lives. The recent I Exist campaign by the National Autistic Society in the UK has influenced our government to take adult issues seriously

Comments are still open. Please visit and counter the collective lunacy of the anti-vaxers.

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Parents’ Interest in Predictive Genetic Testing for Their Children When a Disease Has No Treatment

25 Aug

If you are a parent, would you have asked for a genetic test for autism on your child before his/her diagnosis?

Consider an article in today’s issue of the journal Pediatrics, “Parents’ Interest in Predictive Genetic Testing for Their Children When a Disease Has No Treatment”.

This is not about autism specifically, but about an unnamed “disease”. The researchers posed two “vignettes” and asked the parent to respond to them.

Before people heap criticism over bringing up a paper with the word “Diseases” in the title (and throughout the paper) in relation to a discussion of autism: I am not saying autism is a disease.

Here are the two vignettes:

Vignette 1: Disease With Severe Symptoms and Uncertain Time of Onset
Imagine that a genetic test exists that can identify people at increased risk for developing a certain disease for which there is currently no treatment. Disease symptoms are severe and sometimes lead to early death. People may develop symptoms either as an adult or as a child, and it is not possible to predict how old a person will be when he or she develops symptoms.
Would you want to have your child get this genetic test? Please answer for your youngest child.

And

Vignette 2: Disease With Uncertain Symptoms and Uncertain Time of Onset
Imagine that a genetic test exists that can identify people at increased risk for developing a certain disease for which there is currently no treatment. Some people with this disease will develop severe symptoms, whereas others will develop only mild symptoms. It is not possible to predict how severe the symptoms will be or at what age they will develop.
Would you want to have your child get this genetic test? Please answer for your youngest child.

I would argue that the public’s perception of autism (especially with regression) would fit into Vignette 2. I would further argue that if “disease” were replaced with “developmental disability”, it would have been an even more relevant to the public’s perception of autism.

The results surprised me. There was little if any difference in the responses to vignette 1 and vignette 2. Somehow, I figured more people would want the test for conditions that were always severe and could result in death (vignette 1).

For both vignettes, the responses were fairly evenly split into 3: “probably/definitely”, “unsure” and “probably not/definitely not”.

In other words, about 1/3 of parents say they would want a genetic test and about 1/3 say they would not, with the remainder unsure.

It would be very interesting to formulate “vignettes” that are targeted to developmental delays in general and autism in specific.

What if instead of “diseases” they asked about “developmental delays”? What if instead of “no treatment” they said, “no cure, but some therapies (e.g. speech and occupational) could be beneficial”? What would the responses be like?

The main reason this paper caught my eye is the fact that the study begs the question: if the genetic test can be performed on child, why not prenatally? What would be the difference in the responses from the parents if they were asked about prenatal testing?

Or, to put it very specifically, what if parents were told to consider a genetic test for autism?

How would the responses vary depending on the parents’ perception of autism?

Autism Speaks softens message on vaccines?

24 Aug

That is the message of a recent article by Mark Roth, Autism group softens stance on vaccines .

Autism Speaks, the nation’s largest autism advocacy group, recently made its clearest public statement yet that minimizes the link between vaccines and autism.

Mr. Roth discussed a recent statement from the Autism Speaks website by Dr. Gerri Dawson, Autism Speaks’ chief science officer. He quoted Dr. Dawson as stating:

“So … given what the scientific literature tells us today,” she says, “there is no evidence that thimerosal or the MMR vaccine cause autism” and “evidence does not support the theory that vaccines are causing an autism epidemic.”

It has been, well, interesting watching the reaction to Autism Speaks in the past few years. As recently as two years ago, the vaccines-cause-autism organizations were highly critical of Autism Speaks for ignoring the vaccine question. In fact, it seems like just this year that Autism Speaks “outed” itself as supporting the vaccines-cause-autism idea. This occurred when Alison Singer was forced to resign from Autism Speaks since she wouldn’t vote for vaccine-causation research in the IACC.

From my perspective, this “softened” stance by Autism Speaks is still a stronger message than they were sending a year ago.

This all begs the question: why did Autism Speaks soften their message?

I can speculate (and that is all this is, speculation). First, the vaccine question is highly charged. My guess is that Autism Speaks put off making a definite statement as long as possible. When Alison Singer resigned over her vote in the IACC (voting to remove vaccine research from the funded projects), Autism Speaks was forced to make their views public.

The departure of two key people, Alison Singer and Eric London over the vaccine question was not good publicity for Autism Speaks. Much more, the creation of the Autism Science Foundation gives potential donors a second viable option for an autism research charity that doesn’t fund vaccine-causation research (the first being the Simons Foundation).

What is odd about Dr. Dawson’s comments is this: If there is no evidence that thimerosal causes autism, why does Autism Speaks fund thimerosal research? Here are grants from 2008:

Differential Effects of Thimerosal on Cell Division and Apoptosis in Normal vs Autism Spectrum Disorder Cell Lines ($60,000 for one year)

and

Vulnerability phenotypes and susceptibility to environmental toxicants: from organism to mechanism ($330,000 over 3 years)

Specifically, thimerosal and other vaccine adjuvants will be studied.

(sidenote: Thimerosal isn’t an “adjuvant”)

and

Analysis of developmental interactions between Reelin haploinsufficiency, male sex, and mercury exposure ($324,340 over 3 years)

and

Etiology of Autism Risk Involving MET Gene and the Environment ($659,100 over 3 years)

The next line of experiments will examine the relationship in an even larger sample, and assess the functional effect of the MET gene polymorphism on immune cell activity, and to further examine the impact of environmental toxins (including ethyl mercury) on the gene expression-dependent function of maternal immune cells.

Is Autism Speaks softening their “message” or softening their “stance” on whether vaccines and/or mercury cause autism?

sound advice: pediatricians Answer vaccine questions

20 Aug

Below is a press release from the American Academy of Pediatrics. This isn’t really about autism. But, the autism parent community is one of the biggest sources of misinformation about vaccines. I don’t mind pitching in to help AAP get some quality information out.

CHICAGO — Parents who are doing their homework on their child’s vaccines can go directly to the experts for answers – without leaving home. The American Academy of Pediatrics (AAP) offers a series of audio interviews with pediatricians, researchers, advocates and other parents at http://www.cispimmunize.org/fam/soundadvice.html.

Interviews include a conversation with former First Lady Rosalynn Carter, who discusses her passionate crusade to ensure all children receive life-saving vaccinations. Dr. Richard Besser, the pediatrician who became the public face of the government’s swine flu response in spring 2009, offers advice to families preparing for a future epidemic. Dr. Ari Brown, author of the popular “Baby 411” guides, dispels common vaccine myths. And Dr. Harvey Karp, the pediatrician who has coached thousands of new parents through his “The Happiest Baby On The Block” book and DVD, explains in clear, easy-to-understand language why vaccines are not related to autism.

Parents can listen first-hand as experts address specific questions related to immunization:

Why is it important to vaccinate on time?

What vaccines do adolescents need?

Why should infants get the Hepatitis B vaccine?

Why do kids need the flu shot?

Are some children extra-sensitive to vaccines?

Why are vaccines required for school entry?

August is National Immunization Awareness Month, which is a perfect time to remind people of all ages to catch up on their vaccinations. On the AAP’s Sound Advice page, parents can hear personal stories of people who have been affected by vaccine-preventable diseases. Frankie Milley lost her only child, Ryan, at age 18 to meningitis; she went on to found an advocacy organization devoted to protecting other children from the disease that took her son’s life. Pediatrician Anna Lincoln tells how pneumococcal meningitis threatened the life of her previously healthy infant son, Wiley, before a vaccine was available to prevent the disease. Now she counsels parents in her practice on vaccines.

“I welcome the questions,” Dr. Lincoln said. “I want parents to understand the vaccines, to understand why they’re important, to feel good and comfortable and confident in their decision to vaccinate their children. Although the diseases may seem low risk, they are not. We have to be diligent about continuing the schedule, because it can easily creep back to how it was before the vaccines, which was a time when children could be smiling one night, like Wiley, and the next morning, be fighting for their life in the intensive care unit.”

An interview with journalist Arthur Allen looks at how the media report on immunizations, and the resulting impact on public health. Ken Reibel, creator of the AutismNewsBeat blog, talks about his son’s diagnosis with autism. The audio interviews also include a message from actress Amanda Peet, who has partnered with the advocacy organization Every Child By Two to give parents the information they need about immunizations. Amy Pisani, executive director of Every Child By Two, and Mrs. Betty Bumpers, who co-founded the organization with Mrs. Carter, describe their personal reasons for promoting immunization.

Additional interviews feature pediatric infectious disease specialists Dr. Joseph Bocchini, Dr. Meg Fisher and Dr. Paul Offit; Dr. Judith Palfrey, president-elect of the AAP; Dr. Renee R. Jenkins, immediate past president of the AAP; and Dr. David T. Tayloe, Jr., president of the AAP.

“Parents are natural advocates for their children’s health,” Dr. Tayloe said, “and the AAP wants them to have the information they need about immunizations so they can make the right choices. The internet is peppered with inaccurate information about vaccines. We want parents to have a trusted place they can go for reliable advice. It’s important that immunization rates remain high or innocent children will become at risk for vaccine-preventable diseases.”

All the interviews can be downloaded to an mp3 player. Edited transcripts are posted.

The AAP has additional resources about immunization for parents and journalists:

Vaccine Studies: Examine the Evidence
o http://www.cispimmunize.org/Vaccine%20Studies.pdf

Facts for Parents About Vaccine Safety
o http://www.cispimmunize.org/fam/facts/VaccineSafety_English.doc

The Vaccine Schedule: Why is it Like That?
o http://www.cispimmunize.org/pro/pdf/Vaccineschedule.pdf

Questions and Answers About Vaccine Ingredients
o http://www.cispimmunize.org/pro/pdf/Vaccineingredients.pdf

Vaccines: What Every Parent Should Know
o http://www.aap.org/pressroom/aappr-features.htm

ASA-York billboard to come down

20 Aug

Just got this story in my inbox: After objections, autism billboard coming down.

As has been discussed here and elsewhere, ASA-York had a billboard that, well, was offensive to many autistics.

“It seems to send a message that we aren’t fully present in our own bodies,” said Ari Ne’eman, president of the Autistic Self Advocacy Network. Autism York might have been shooting for an “edgy” message, but its billboard was eerily reminiscent of the NYU Child Study Center’s ransom-note-style advertising campaign in 2007, Ne’eman said.

ASA-York has agreed to remove the billboard:

Autism York has agreed to take down a controversial billboard on Route 30 after disability rights advocates said the sign unfairly compares autistic people to kidnapping victims.

I appreciate them pulling the billboard.

Jenny McCarthy: I’d like to see some action behind those words

18 Aug

Jenny McCarthy is on the cover of the latest Cookie Magazine. As part of her interview, she asserts that she is “pro safe vaccine”, not anti vaccine.

Now McCarthy, along with her boyfriend, actor Jim Carrey, serves on the board of directors of Generation Rescue, an advocacy and research organization that calls for eliminating toxins in vaccines and for delaying shot schedules.

Notice “delaying” shot schedules.

Another quote, talking about her own experiences:

Going over his medical history now, she sees a link between a series of ear infections, a severe case of eczema, and a hepatitis-B booster shot. “Looking back, I’d say, ‘God, if a kid is having more than seven ear infections in a year and he’s got eczema, there are some issues here—his immune system is obviously under attack, and we need to put him in the sensitive category. Let’s just delay some of his shots,’ ” she says. “Not eliminate, delay.”

Again, note the phrease “Not eliminate, delay”.

This isn’t exactly new. The Generation Rescue website page on vaccines tells parents to “consder delaying vaccines”. As near as I can tell, GR has had a statement like this since the vaccines page was first put up.

But here is where actions and words part company for both Jenny McCarthy and Generation Rescue. They have “recommended” vaccine schedules. Their “favorite” schedule, included in their paragraph on “consider delaying” vaccines, states flat out: no live virus vaccines. I.e. no Measles, Mumps, Rubella or Varicella (chicken pox).

That’s not “delay” that’s “eliminate”.

Let’s compare the GR alternative schedules to the CDC recommended schedule, shall we?

The childhood schedule includes vaccinations against 15 diseases:

Hepatitis B
Rotavirus
Diptheria
Tetanus
Pertussis
Haemophilus influenzae type b
Pneumococcal
Polio
Influenza
Measles
Mumps
Rubella
Varicella
Hepatitis A
Meningococcal

Now let’s check GR, Jenny McCarthy’s organization, and their recommended schedules:

First, GR’s “favorite” schedule only has protection against 4 diseases.

Pertussis
Diptheria
Tetanus
and, Polio

Again, that’s not “delay” that’s “eliminate”.

For their second option, GR claims you can “turn back the clock” and use the 1983 schedule. I don’t know how anyone could think that is supposed to be a “delay” in shots. Here’s the count (6 diseases covered):

Diptheria
Tetanus
Pertussis
Polio
Measles
Mumps
Rubella

As the third option, Jenny McCarthy’s organization suggests you “go Danish” and use the Denmark schedule (7 diseases):

Diptheria
Tetanus
Pertussis
Haemophilus influenzae type b
Polio
Measles
Mumps
Rubella

Jenny McCarthy *says* she is promoting “delaying” vaccines. Her actions speak much louder than her words.

If you want to say you are for “delaying” vaccines, then change your website. Pretty simple.

Of course, when you do, I’d love to see the science showing that the delayed schedule you pick is safer than the current one.

Working together to advance respect for autistics

17 Aug

It was over before I knew it had happened. And it ended well.

Joe over at the Club 166 blog spotted a billboard that was, well, rather reminiscent of the “Ransom Notes” campaign billboards that caused a great stir in the autism communities. It appears that Joe spotted this billboard in Lancaster County, Pennsylvania:

York ASA Billboard

York ASA Billboard

Well, Joe blogged it as Could We Have A Little Originality, Please. That was Friday. He then sent the following letter on Sunday.

Dear Sirs/Madams:

As the father of a child on the autism spectrum, I am writing to express concern about the York, PA ASA chapter’s billboard campaign that associates autism with being kidnapped. I happened to notice one of your billboards while taking a vacation in Pennsylvania. This campaign is reminiscent of the 2007 Ransom Notes campaign that was undertaken (and subsequently removed) by the NYU Child Study Center in New York City.

Comparing people with autism to those who are kidnapped is not only factually wrong (my son hasn’t been kidnapped, he’s right here in front of me), but is demeaning and offensive to those who are autistic. Rather than “creating awareness”, I can only see the logical end result of such an ad campaign be one of creating fear, misunderstanding, and disrespect towards those who are autistic.

In Medieval folklore the image of a changeling was used to describe children with then misunderstood medical disorders or developmental disabilities. Fairies or trolls were thought to have kidnapped the “normal child” and left the changeling in its place. One would think that in the 21st century we could get past such folklore, and deal with reality.

Putting up ads that show such disrespect towards autistics will certainly not result in greater acceptance and integration in either the school environment or the community. As an organization that ostensibly has been set up to serve the needs of the autistic community, I urge you to immediately remove the ads. Furthermore, I strongly encourage you to consult with autistic self advocates before formulating future ad campaigns.

Thank you for your time, and I hope to hear from you soon.

Sincerely,

And this led to a “Quick Resolution“.

Along the way, Joe had help from abfh, including her “end of week stupid roundup” post.

Also, ASAN got involved. Here is Ari Ne’eman’s letter discussing what happened:

Hello,

Only a few hours after our letter and thanks to the hard work of bloggers like Joe at Club 166, Abfh, Cracked Mirror in Shalott and others who wrote in and called about the billboard campaign, ASA-York has agreed to pull the billboards. This is a sign of the importance of working together as a community to address issues like this. A year and a half ago, it took the combined strength of 21 disability organizations from across the country to have our voices be heard on a billboard campaign not dissimilar to this one. Today, our community’s reputation for action and ethics has grown to the point where we can bring about change much more rapidly. This should serve as a reminder of the importance of a strong, united Autistic community with a clear moral vision of a better future for Autistic people. Small victories like this remind us of what we can accomplish by working as one community on issues of every kind and size. Thank you to everyone who took action and in particular to the members of the blogosphere who first rallied the community around this. I encourage people to write to ASA-York’s President Amy Wallace at Amy Wallace amywallace3@gmail.com to express your appreciation for their swift action to remove unethical advertising and to encourage them to work with the Autistic community in the future.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

I’m glad to see this advocacy effort pay off so amicably and so quickly.

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