Omnibus Autism hearing: Dr. Lord on autism and regression

16 Jun

Dr. Catherine Lord is widely viewed as the world’s foremost expert on autism diagnosis. The Department of Justice lawyer who examined Dr. Lord in the thimerosal portion of the Omnibus hearing spent what seemed to me to be a very long time just going over Dr. Lord’s credentials and accomplishments as they are considerable.

I was listening to the recording of her testimony yesterday, again, and was reminded of how much I had learned from listening to Dr. Lord’s testimony about what is now known about the early months and years of autistic children. I already knew the basics of what she was explaining but there were some fascinating details that I didn’t know. Links to two audio clips that contain the following testimony are found at the end of this blog entry. Once again, I did the transcribing of the audio, and once again I’m guessing the Dept. of Justice lawyer is Ms. Ricciardella:

Ms. Ricciardella: Does any of your research or research of others support a distinct subtype of regressive autism?

Catherine Lord: No. I mean as especially as we have looked at the toddlers… it’s clear that even, even these very large studies where we felt like we were asking parents many, many questions in great detail probably do not get at what the essence of what happens in those early months because the changes are more subtle and our ability to observe them is so much dependent on the context. It dependent on when do you see a child and what are you looking for. So I think that that has that has moved us, and I think much of the field, toward a sense that there isn’t a regression or not a regression the question is the degree and type of worsening that occurs, how long it lasts and how many skills a child has before that occurs.

Ricciardella: Now in terms of the clinical outcome of a 5 or 6 year old with autism. Is there any marked difference in the clinical outcome of a child who had what I’ll term “early onset autism” versus a child who did indeed have regression.

Lord: Most studies have found no difference at all. The studies that have found differences have found these relatively small differences in verbal skills.

Ricciardella: Now you touched on earlier doctor that you are continuing to research the phenomenon of regression is that correct?

Lord: That’s right

Ricciardella: And you are conducting a longitudinal study. Is that correct?

Lord: That’s right.

Ricciardella: And what information is emerging from that study with regard to regression?

Lord: With that study we have been doing is seeing children who are at risk for having autism, either because they have a sibling with autism, so they may not have any behaviors associated with autism but they have a sibling and their parents are eager to have somebody follow them, or something has occurred, or something has has been seen, often identified by parents, but sometimes by a pediatrician, for example the child has had seizures in the first year of life and so someone is concerned that this child might develop autism.
And we see the children once a month, have parents fill out the same forms each month and then we do standardized assessment, a toddler version of the ADOS. So we do a standardized observation of the child’s social behavior with us and with the parents every month.

What has come out of this is that the trajectories are much less clear than we would have thought from retrospective descriptions years later of what the children are like, and when we have tried to sort that out, I think that there a number of implications. One is that different skills are changing at different rates and at different times. So that you have, for example, eye contact is typically getting worse for almost all of the children for from 12 month to 24 months. And social engagement responsiveness to someone trying to get the child to interact with them typically is getting worse in children who have autism diagnoses say by the time they are 2 1/2.

So those things are changing but they actually cycle back around, so they get worse for a while and then for some children they start getting better again.

We also have other skills, for example response to joint attention, or response to somebody pointing, or trying to get the child to look at something, and that for a number of kids gradually gets better even at the same time that some of these social skills are getting worse.

So I think what we’ve realized is it’s just much more complicated changes in development than we thought.

And that these things we used to think only happened in kids who had regressions are actually happening in almost everybody who has autism, because there are some children who look very different from typical children at 12 months, but those are few and far between, and in fact in our follow up study that is not necessarily predictive.

The kids who are not making eye contact at 12 months are not the most autistic kids at age 3. So many things change during that toddler period and I think our conceptualizations of what regression is are partly based retroactive trying to figure out what happened and didn’t happen, which is quite different than when we can see it happening right before our very eyes.

…
(the second audio clip)
Ricciardella: Doctor are you are aware of any evidence showing that the etiology of regression in autism is different from that in “non-regression” for lack of a better word.

Lord: No. And I think again that the idea that there aren’t these clear patterns makes it much harder to draw conclusions about etiology. Because basically could arbitrarily divide these kids up in millions of different ways. So far, … people have tried to divide them up and haven’t found differences in etiology. But it’s not even clear that we know how to divide them up, or that they can be divided up.

Ms. Ricciardella: Doctor before this litigation had you ever read in any published literature that thimerosal containing vaccines cause regressive autism only.

Dr. Lord: I had not.

Ricciardella: Are you aware of any study that has ever suggested that hypothesis?

Dr. Lord: No.

Ricciardella: Doctor did you review the report submitted by Dr. Marcel Kinsbourne in this litigation?

Lord: Yes.

Ricciardella: On page 14 of his report, he states that the, “late onset of the regressive subtype and the subsequent remission or relapses become more understandable if autism is due to disease than if it is the aftermath of congenital maldevelopment.” Do you agree with this statement?

Lord: No

Ricciardella: Why not?

Lord: There are many different disorders where the onset occurs later on. We have Huntington’s disease and schizophrenia and sickle cell anemia and all kinds of disorders… where in some cases we know are genetic, but which occur later on. So I think we can’t make a simple inference that because something emerges later that means that somehow someone has caught a disease or had some kind of particular environmental event that caused it.

Ricciardella: Dr. Kinsbourne also draws a distinction between what he terms as classical or congenital autism and regressive autism. Is this a proper distinction?

Lord: I think the term congenital autism means nothing. Because, I mean, as I said it’s a developmental process. We can’t diagnose autism in a brand new baby. And so in all cases something is developing that would lead us into autism. So to make this distinction between congenital and regressive is a false dichotomy.

Ricciardella: … Dr. Kinsbourne has also describe what he terms his “over-arousal model” as an explanation for autistic behavior. Does his over-arousal model accurately describe what is known about autistic behavior?

Lord: I don’t believe so, I mean the over-arousal model has been around for 40 or 50 years and used to describe many different disorders. I think one of the hard things is that it’s becomes very circular. And children with autism do respond to being over-stimulated as do many other kids, and children with autism may respond in more conspicuous ways, and may have a lower threshold. But the problem is that often the behaviors are used to say that a child is responding by over-arousal, for example by flapping or getting very physically excited, or distracted, are the same behaviors that occur when the child is under-aroused. You know, we can get children who have a lot of self-stimulatory behaviors to do these behaviors by putting them in a situation where there’s nothing to do. We also see children do these behaviors when they are very happy or when they are not so happy. So that the behaviors that used to define over-arousal are behaviors that occur in many different contexts.

Ricciardella: Thank you. That’s all I have.

…

PSC Lawyer, Tom Powers: … I do have some questions to ask you as you might imagine based on the report you filed and the testimony you gave today. …Your testimony … is that there’s no phenotype for regressive autism. … Regression within autism is not a distinct phenotype with in autism spectrum disorder, is that correct?

Lord: Yes.

Powers: You’ve also describe regression in autistic children as a striking phenomenon. … How would you describe the difference between a phenotype and striking phenomenon?

Lord: My point about the striking phenomenon is that it is a remarkable experience to watch a child who has been able to do things not be able to do those things. Or to watch a child who has been relatively socially engaged become less engaged and be more and more difficult to engage or attract. But I think that is different from a phenotype because a phenotype implies that there are a cluster of behaviors that are associated with each other, and that there’s something unique about that cluster of behaviors. I think regression is a real phenomenon in autism, but there’s a continuum of regression. … And we can create a phenotype, I can say, well I’m only putting kids who lost words into this group and I’m going to call it the Lord phenotype. But there has been no, nobody has been able to show that that phenotype is associated with anything other than the characteristics which I used to define the phenotype.

Powers: And that would be because, as I understand it, is because autism diagnostically is entirely a symptomatic diagnosis that is there’s not a biomarker … is that correct?

Lord: It’s not, the problems with defining the phenotype aren’t because autism is defined by purely by behavior, it’s because we haven’t been able to find an association between any of these particular phenotypes that people have pulled out, and the ways in which people have pulled out the phenotype.

I realize now that if my own (now adult) ASD child been a part of Dr. Lord’s baby siblings study that they would have been able to document a “regression” because, basically all autistic children regress, depending on how strictly you define “regression”. I remember my ASD child as an infant apparently losing the ability to respond to the sound of his/her name, and then regaining that ability. Looking back, I doubt that I could isolate the dates when this “regression” started and when it ended, since is was just aggravating to me at the time and not something I brought to the attention of our family doctor.

(Edited to fix some errors my transcribing. Also, I just listened to the second clip I uploaded to boomp3.com and realized that it is a little shorter than I thought.)

Click here for the first clip.

Click here for the second clip.
For some reason I can only embed one “player” and it must be at the very end of the post. This plays the second clip:
http://static.boomp3.com/player.swf?song=by6i9hwl7_0<a style=”font-size: 9px; color: #ccc; letter-spacing: -1px; text-decoration: none” target=”_blank” href=”http://boomp3.com/listen/by6i9hwl7_0/lord-2″>boomp3.com</a&gt;

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Quag-Geier

14 Jun

I propose that any researcher or scientist who unwittingly gets into a quagmire with the Geier’s should be referred to as being ‘quag-geier-ed’. Its a handy way of referring to people who’ve (possibly accidently) stumbled into a great big pile of shit.

I therefore nominate Professor Heather Young as the inaugural QuagGeier. She has published a paper with the Geier’s which alleged to find:

associations between neurodevelopmental disorders (NDs) and exposure to mercury (Hg) from Thimerosal-containing vaccines (TCVs) by examining the automated Vaccine Safety Datalink (VSD)

One would imagine that any serious researcher who valued her career would be reluctant to associate with the Geier’s who have odd ideas about what is valid research but maybe Professor Young simply didn’t know.

Anyway, I forwarded the paper itself onto Epi Wonk, a blogger who:

…has a Ph.D. in epidemiology from an Ivy League university. Before that I got a bachelor’s degree from a different Ivy League college, a master’s degree in developmental psychology, and a master’s degree in medical sociology from another Ivy League University. I worked for more than 30 years as an epidemiology professor in medical academia and schools of public health, and in the senior biomedical research service at the Centers for Disease for Disease Control and Prevention (CDC). During my career I have been the editor of two epidemiology journals and one more general biomedical journal. I am now retired.

So very, very bad was the quality of this paper that Epi Wonk took three (and possibly a couple more in the future) posts to tackle the numerous issues with it. I plan to recap them here but here is Epi’s take on the paper itself.

So in part I, Epi found the following:

dubious “imputing” or imputation lies at the bottom of the author’s little trick…..

Imputastion is simply – using known data to ‘guess’ at unknown data. Epi gives an example:

…let’s say a researcher has a file of data on children and 8% are missing data values on parent’s household income, 4% are missing data values on gestational age at birth, and 1% are missing data values on birth weight. She decides to use an imputation procedure to impute values for parental income, gestational age, and birthweight where they were missing. Perfectly fine, legitimate, and scientifically valid under most circumstances.

However, when we are dealing with something like autism….

She examines the data and sees that in certain cohorts in her study population the distribution of autism isn’t quite what she would like. So she “imputes” autism cases into the data set. Except that she’s not imputing a value on a variable for an existing study participant. She’s adding imaginary autism cases into the analysis. This isn’t imputation — it’s cooking the data.

Epi was very disturbed about this to the point that xe said:

This is just not done. It’s not valid. It’s not ethical. Adding imaginary cases into a data set borders on scientiific fraud.

Later on in the comment thread that developed, commenter Andrea asked:

Does this mean that Young, Geier and Geier added 45 and 80 cases that were not in the original data sets, that they MADE UP those 125 cases just to add imaginary data points to make the stats results look more like what they wanted?!

Thats exactly what happened.

In Part II of xes detailed look at this paper, Epi concluded that when it come to controls and particularly controlling for any confounding variables:

….there’s no attempt to control for, or adjust for, the confounding effect of birth cohort. Just one look at Figure 1 (or a basic knowledge about trends in autism) tells you the regression coefficients (slopes) are being driven by increases in autism risk over time. Given the increase in frequency of autism (and other neurodevelopmental disabilities) during time time period, you could do an ecological regression analysis of almost any factor that varied over time and you would find an an association with autism. I would bet that you could enter number of sushi bars per capita into an ecological regression and you’d find an association with autism rates.

This is not a good or valid paper. It seems, based on the expert analysis of a professor of epidemiology that this paper is fundementally flawed.

Data Obtained By MM Show There’s No Association Between DTP Vaccination and Autism

14 Jun

Jon Mitchell brought to my attention some data I hadn’t seen before on DTP coverage from California. The data come from a post by JB Handley over at AoA where we find he’s still complaining about a Simpsonwood “cover-up” of sorts (decisively debunked back in 2005). The data, apparently obtained via FOIA, was being analyzed by the CDC back in 2001, at a time when an association between thimerosal and autism was still considered an open question.

What I think is interesting about the data is that I’ve found they convincingly show there’s no association between 4+ DTP vaccination coverage by age 2 (not just thimerosal) and autism. By extension, I believe this is fairly good evidence that there’s no association between vaccination in general and autism. As usual, my analysis can be easily replicated by readers. The only data outside of that provided by JB Handley that I will use is population data from California EPICenter. Since EPICenter doesn’t provide population data for all those born between 1980 and 1994, I’m using data on 11 year-olds from 1991 to 2005. This should be a good approximation.

Of course, I cannot prove that extremely rare cases of vaccine injury don’t manifest as autism. This is not demonstrable with ecological data of this nature. Obviously, JB Handley’s intention in the first place is to show that fluctuations in vaccine uptake have a very noticeable effect in autism prevalence by birth year. This is the type of claim I will scrutinize.

First, let’s look at what I call the “naive” correlation between DTP coverage and autism prevalence by birth year.

The figure above (click to enlarge) shows two upward trends, one for DTP coverage and one for the administrative prevalence of autism by birth year. Some people might argue that the coincidence of upward trends indicates there’s a potential association. That the administrative prevalence of autism was on an upward trend is not surprising. It has been on an upward trend pretty much since records have been kept in California. Is it surprising that vaccination uptake was on an upward trend as well during the years graphed? Let’s consider this question. How many things were not in an upward trend during the 1980s and 1990s? How many of those are associated with modernity and scientific progress?

It’s interesting that such naive and expected correlations are exploited to this day, for example, in the recent Young-Geier study.

After taking a closer look at the graph, an actual association is not clear at all, at least as far as I can tell. We could leave it at that. After all, these sorts of graphs are not evidence of an association at all. But I think we can do better and get to the bottom of this.

Since the graph is supposed to show that a change in vaccination uptake can significantly alter the administrative prevalence of autism, I think it’s fair to assume that small fluctuations in the uptake would tend to be associated with small fluctuations in prevalence, in roughly the same direction. But let’s be clear here. I’m not saying that every year there’s a DTP fluctuation, there should be a matching autism fluctuation. After all, some randomness is expected. What I’m saying is that we should expect to find a statistical trend in the association between the fluctuations, even if it’s a weak trend.

Let me describe the methodology I will use. I will have Excel produce order-2 polynomial models for both the DTP and autism trends. (These give excellent fits, with R2=0.94 for DTP and R2=0.99 for autism, but I think other types of models would produce basically the same findings.) Then I will obtain DTP and autism deltas by subtracting actual DTP and autism values minus expected values based on the corresponding model formulas. (A delta will be a small positive or negative number whose meaning can be thought of as “how different from expected the value is in a given year.”) Finally, I will have Excel produce a scatter graph of DTP deltas vs. autism deltas. Using this graph we will determine whether there’s a trend.

The polynomial models are the following.

Autism: y = 0.1013x2 – 0.2352x + 4.4526

DTP: y = 0.1598x2 – 0.3683x + 51.3715

The variable ‘x’ is the year of birth minus 1980. The variable ‘y’ is the expected prevalence or DTP coverage value. With the help of these formulas, we obtain the following deltas. The reader is encouraged to visually confirm the validity of these deltas using the figure above.

(Year, Autism Delta , DTP Delta)
1980, -0.48 , -0.47
1981, 0.06, 4.24
1982, 0.26, 0.83
1983, 0.22, – 4.0
1984, 0.16, – 3.56
1985, 0.40, 0.77
1986, 0.66, -0.81
1987, -0.68, -1.32
1988, -0.50, 2.25
1989, -0.73, 1.20
1990, -0.53, 2.23
1991, 0.10, 0.64
1992, 1.52, -0.16
1993, 0.14 , 0.01
1994, -0.58, -1.84

The following figure (click to enlarge) is a scatter graph of the autism vs. DTP deltas.

This is a completely random scatter of dots. In fact, if we try to fit a linear model to it, we get a slight downward trend. If DTP vaccination coverage were associated with autism, I would expect to see a more clear scatter and an upward trend.

I don’t know about my readers, but I personally find this data quite convincing, and I’m glad JB Handley brought it to our attention. Vaccines (at least the DTP vaccine) are not associated with autism at the population level.

Upcoming autism/science related reading material

13 Jun

There are three soon-to-be-published books that are coming out that all discuss similar subjects. I’ve proof-read one of them and am very much looking forward to the other two being published.

The first one is Defeating Autism: A Damaging Delusion (UK) (and also US) by Michael Fitzpatrick, a GP and father to an autistic son himself.

Here’s the synopsis:

Autism: disease, disorder or difference? What causes autism – genes or environment? Can biomedical treatments cure autism, and are they safe? An increased public awareness of autism has resulted in a rising trend of diagnoses, creating the impression of an ‘epidemic’. Many parents of children newly diagnosed with autism have been impressed by plausible theories blaming vaccines and other environmental causes. Many have also been captivated by claims that ‘biomedical’ treatments – including special diets and supplements, detoxification and medications – can achieve dramatic results.In “Defeating Autism”, Michael Fitzpatrick, a family doctor and father of a son with autism, questions the scientific basis of environmental explanations of autism and exposes the incoherence of unorthodox ‘biomedical’ theories and therapies. This book reveals that these therapies are far from pioneering interventions and they remain unsubstantiated by scientific authorities. Campaigns promising to ‘defeat or cure autism now’ have attracted much support among parents struggling with their difficult children.

But the crusade against autism risks dehumanising and stigmatising those who are identified as autistic and their families. This compelling book is essential reading for students and professionals working in the field of autism, as well as academics concerned with the public understanding of science and the treatment of scientific and medical controversies in the media.

Its available on pre-order now, due for publication in October this year.

I’m pretty sure this will be a very good book. Mike and I have swapped emails on numerous occasions and I have benefited from his medical expertise in writing some of my blog posts. I’ve also read and enjoyed his earlier published works on MMR .

The second one I’m really looking forward to is Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure (UK) (and also US). Here’s the synopsis for this one:

A researcher in London was the first to assert that the combination measles-mumps-rubella vaccine known as MMR caused autism in children. Following this “discovery,” a handful of parents declared that a mercury-containing preservative in several vaccines was responsible for the disease. If mercury caused autism, they reasoned, eliminating it from a child’s system should treat the disorder. Consequently, a number of alternative therapies arose, and in one such treatment, a doctor injected a five-year-old autistic boy with a chemical that bound to mercury, only to stop his heart instead.

Children with autism been placed on stringent diets, subjected to high-temperature saunas, bathed in magnetic clay, asked to swallow digestive enzymes and activated charcoal, and injected with various combinations of vitamins, minerals, and acids. Instead of helping, these therapies often hurt those who are most vulnerable, and particularly in the case of autism, they undermine childhood vaccination programs that have saved millions of lives. In this book, Paul A. Offit, a national expert on vaccines, challenges the modern-day false prophets who have so egregiously misled the public& mdash;and exposes the opportunism of the lawyers, journalists, celebrities, and politicians who support them. Offit recounts the history of autism research and the exploitation of this tragic condition by advocates and zealots. He considers tha manipulation of science by the media and the courtroom, and he explores why society is susceptible to the junk science and dangerous therapies put forward by anti-vaccination activists.

I’ve talked to people who have proof-read this and they say it is very, very good and definitely going to raise a few eyebrows when its published (September this year).

Like with Mike, I have swapped courteous emails with Paul Offit and his science has helped inform several of my blog posts. I’ve also read the truly excellent ‘Vaccinated’, Offit’s biography of Maurice Hilleman.

Lastly, we can turn to the upcoming book I have proof read.

Do Vaccines Cause That?! A Guide for Evaluating Vaccine Safety Concerns (US) is one of the most clearly written and accessible books I’ve read regarding what vaccines do and don’t do.

It doesn’t just discuss autism, it also touches on Asthma (something else pertinent to my family) and Diabetes. Step by step it walks the reader through a jargon-free and yet non-patronising look at both the good science and bad misinformation put out about vaccines.

Although I have an electronic copy of this I can assure you I’ll also be buying a paper copy and I’ll be recommending it to my local GP and autism support group. I think its going to become an absolutely indispensable guide once its published (later this month).

There’s also a sample chapter available for free on the accompnying website. I can’t recommend this highly enough.

Green This

11 Jun

OK, so here’s the back of the t-shirt:
Green our vaccines

(click for bigger – I want you to read the ingredients list).

First of all – who’s decision was it to use Impact as a font? Whoever it was shoot them, they’re uncreative and uninspired. It looks shit. Seriously. it looks like you stepped back in a time machine to 1999 and decided it looked ‘kewl’. It doesn’t.

Anyway, as you can see, plenty of scare mongering went on. I think they forgot to include Eye of Newt though.

So lets actually go through what’s on that list and how true it actually is.

Aluminium

Yeah, there’s Aluminium in vaccines.

There’s also Aluminium in breast milk so lets compare the two.

According to this paper (which is from 1990 – any more up to date papers welcomed) the amount of Aluminium in breast milk is 49 μg/L. The average amount of breast milk expressed per day is 0.85 liters.

This means that 41.65μg Aluminium per day is in breast milk.

Now, according to this paper, there is between 125 – 850μg of Aluminium per dose in a vaccine.

Using this page and this page I estimated (and I’m welcome to correction) that by the time a child reaches 6 years old they will have received 17 Aluminium containing vaccines.

So, for a 6 year old, total Aluminium is between 2,125 – 14,450μg.

In real terms this means that after between 51 and 346 days breast feeding, a 6 year old will have taken onboard the same amount of Aluminium as from the total US vaccine schedule.

Now I couldn’t find out what vaccines contained the lower amount or which contained the higher amount. Even so, this means that if every vaccine a 6 year old has that contains Aluminium contains the highest possible amount, within a year of breast feeding they will have matched that.

Or to put it another way, an anti-vax tree-hugger soccer mom who doesn’t vaccinate her baby will have given him the same amount of Aluminium he would’ve had in six years after one year of breast feeding.

And thats of course, not even touched on the fact that:

In the Earth’s crust, aluminium is the most abundant (8.13%) metallic element, and the third most abundant of all elements (after oxygen and silicon)

And is found naturally occurring in sea water, fresh water, the human body etc etc.

Formaldehyde

Yeah, there’s Formaldehyde in vaccines.

There’s also Formaldehyde in Apples, Apricots, Banana’s and….ah, I lost interest. Lots of stuff. Including the human body.

So – how much is in vaccines?

According to this and using it in combination with the US vaccine schedule referenced above, we can see that the total amount of Formaldehyde in vaccines from the vaccine schedule for a 6 year old child is 1.2016mg (again, do your own maths, correct me if I’m wrong).

For comparison to that 1.2mg in all vaccines for a 6 year old, 1 (one) banana contains 16.3mg Formaldehyde.

So, what I’m saying is that nanaslices this is a picture of 3x the amount of Formaldehyde you’ll find in the entire vaccine schedule of a 0 – 6 year old US child.

Anti-Freeze

There’s no anti-freeze in vaccines. A single component of antifreeze – polyethylene glycol – is used to inactivate the flu virus in one brand of that vaccine; it is also used in the purification of certain vaccines. Its also used in some skin creams and toothpastes.

Thats all I can be bothered to do. If anyone wants to tackle the rest, be my guest in the comments.

Neurodiversity on Good Morning America

11 Jun

Ari Ne’eman and Kristina Chew were interviewed for a segment of Good Morning America that aired today. Ari Ne’eman is the president of the Autism Self Advocacy Network and Kristina Chew writes the AutismVox blog.
NIH director Tom Insel was also interviewed.

Ari Ne’eman noted:

“Anti-cure” doesn’t mean “anti-progress”.

Unfortunately, the idea of “anti-cure” gets a lot of attention and I can understand why a news show would latch onto it. I personally see this statement as more important:

I can’t think of a civil rights movement thoughout history that hasn’t been faced with resistance and misunderstanding on the part of it’s detractors.

That’s what this is–a civil rights movement. A movement to say, “people are people”. It isn’t about autism: there are six billion different places on the spectrum of humanity, each spot filled by an individual who has rights and deserves respect. Some of the places on the spectrum need more support. Some, much more support.

It is not the “burden” of society to care for those with greater needs, as the situation is often represented. No, it is the responsibility of those with greater gifts to offer support to those other full members of society who are in need.

Kristina notes that “she is not suffering”. But, she goes on to note that parents need better supports and services and education for their kids. Who can argue with that?

Tom Insel, director of NIH notes that there are people with very great challenges on the autism spectrum. For those he states:

“…for whom we would love to have a cure, to at least get them to a point where they would be able to function as well as the people in this movement.”

Dr. Insel, thank you. Let’s help people make progress. This sounds very much like a neurodiversity parent who has stated:

What we wish to do is help them to grow to a point where xe can make such a choice. And make no mistake, if a cure was ever developed and if xe wanted it, I would ensure xe got it.

But, again, I think people will latch onto the “cure” question. The point as I see it is to help people make progress. The point is that especially for those who don’t make much progress, let’s make sure that they are given the supports be they physical, social, whatever it takes to live their lives with dignity. We are in the early stages of a civil rights movement.

The Omnibus Autism hearing: Dr. Deth and the duck brain mystery

11 Jun

In my blog entry about Dr. Johnson’s testimony in the Omnibus Autism hearing I mused that:

I may have to devote a separate post to the issue of Deth taking data from (but not citing) a 1958 paper (pdf) that reported the level of cystathionine in duck brains (besides duck, also, human, cat, rat, guinea pig, horseshoe crab, chicken, cow and monkey).

.

I thought it might be worth blogging the issue of this irregularity in Dr. Deth’s expert testimony. I found where Dr. Deth’s powerpoint slides were made available on a website favorable to his hypothesis. It was very kind of them to do that. Here is that slide of Dr. Deth’s that Dr. Johnson had commented on. It gives comparative levels of cystathionine as found in various animal brains and human brain.

The above lovely graph was apparently created by Dr. Deth for the expert report to the Special Masters of the vaccine court. Dr. Johnson noted that there is no reference on the slide indicating which paper it came from. One would expect to see a citation like, “Stott, 2001,” or “Wakers et al., 1999,” the absence of which made Dr. Johnson wonder if the graph represented some research done by Deth himself. But Dr. Johnson was surprised by the seemingly odd “duck” in the list of animals. So after Deth had given his testimony, Dr. Johnson did a Google search for the words “duck” and “cystathionine” and in no time he had downloaded a pdf of the very paper the duck data had come from. I did the same Google search and likewise in no time had downloaded the same paper. If you click here you can (automatically) download that very paper for free. The title is L-CYSTATHIONINE IN HUMAN BRAIN. The authors are Harris H. Tallan, Stanford Moore and, William H. Stein. It was published in 1958.
And if you do access that paper and read it you will find the following table on page 7 of the pdf.

It looks as if Deth warmed-over this half-a-century-old data and averaged the amount of cystathionine in the 5 human-brain samples and came up with about 45 mg/per 100 g wet weight for his graph and it looks like he decided not to include the data from horseshoe crab brains. The original table reports the cystathionine in “mg. per cent”. Deth faithfully included the cat, cow, rat, guinea pig, chicken, monkey and duck levels, as well as the human liver, kidney and muscle levels.

As I remember, Dr. Johnson pointed out that that data on cystathionine in brain tissue of humans and rats, cats, cows and ducks didn’t make the point that Dr. Deth want to make with it anyway, but one has to wonder why he took the data that was in a 50 year old paper in table form and turned it into a histogram looking all modern and freshly churned-out by Excel and all. And if Deth thought it was necessary to make the point he needed to make, shouldn’t he at least have cited the paper properly?

When I was writing science papers for assignments at the college level a couple of years ago, it was drummed into all the students in strong terms that we should not ever plagiarize anything, or even to take the chance that something might look plagiarized. Professors warned their classes that the Internet was a powerful tool for digging up the true sources of plagiarized quotes (or entire plagiarized papers) and for finding the proper attributions for un-attributed graphics or statements, or creations of any kind. Plagiarism was, and still is, grounds for being tossed out of most colleges and universities, as I understand it, and students don’t get to claim that they didn’t know any better. One would think that professors would be held to an even higher standard.

white duck head photo by law_kevin on flickr.com

Competition Time

11 Jun

Icon Books sent me a review copy of the UK release of Unstrange Minds which is how I was able to review it so promptly.

However, this means I now have (count ’em) _three_ copies of Unstrange Minds – the galley Professor Grinker sent me, the US edition (never read it) and the UK edition.

Now I don’t need three copies so I’m going to give away the US edition (which is also personally signed by Professor Grinker – as evidenced by my pointing digit) to one lucky person (willing to post anywhere in the world).

grinker

So how to choose who to give it to?

Here’s a photo of the Green our Vaccines brightest lights. What I want you to do is caption it. The rules:

1) Nothing defamatory!
2) No swear words that begin with c or f
3) No reference to Evan McCarthy
4) Do as many as you like
5) Funny = good
6) No photoshopping the image
7) Post your entry either in the comment section of this post or in a separate post on your own blog and post the link to that here.

Go!

(click for bigger version).

The Art of Green Our Vaccines

9 Jun

Before the “Green our Vaccines” rally (already much discussed–such as here, here, here, here, here), I spent a lot of time thinking about what sort of questions I would ask Jenny McCarthy and Jim Carrey if I had the chance.

I don’t know how much time Arthur Allen put into thinking about the problem, but I do know he nailed it with two succinct questions.

As part of his story on the rally, he recounts his brief opportunity to pose questions to the couple. Ms. McCarthy and Mr. Carrey passed near him at the same time that they were allowing an opportunity for “sound bites”. Art saw an opportunity and got a few quick questions in, as he recounts:

At which point I saw my opportunity and after checking for rally monitors, asked, “How many vaccines, exactly, is too many?”

“Too Many, Too Soon” is the slogan. It’s on the back of about 500 T-Shirts (with one each on Jenny and Jim). Given that, you’d think they’d have a damned good answer. At the very least, a reasonable, on-topic “sound bite”. Instead they answered (again as recounted by Art):

“In 1983,” McCarthy said, “our kids only got 10 vaccines. Now it’s 36” (actually, it’s 28, max, by age 2). I asked, “So should they only be getting 10? Which ones shouldn’t they get?” I saw McCarthy turning and asking someone, “Who is this guy?” Carrey responded, gamely. “Kids aren’t a bottomless pit you can pour toxins into, there has to be a limit,” he said.

Was that a sound bite or were they just caught flat-footed? Thankfully, Art had a great followup question which shows us the answer:

“So what’s a vaccine they shouldn’t get?” I asked. “A lot of parents of autistic children would have opted not to get the tetanus shot,” he said.

Huh?!? Tetanus? Wow, did I miss the Andy Wakefield study on Tetanus in the guts of autistic kids? Or, was it the Mady Hornig rats with Tetanus study? No, wait, isn’t the Generation Rescue motto, “It’s the tetanus, stupid”?

The answers are “no” to all of the above.

Generation Rescue (who have Jenny as their board-member/spokesperson) doesn’t mention “tetanus” at all on their vaccine page. As in, no “tetanus vaccines cause autism” statements. However, in the link to their “favorite” vaccine schedule (which is a recipe for disaster in this person’s eye), they include tetanus. Yep, they “recommend” kids get tetanus shots. In their number II recommended schedule, they include tetanus 5 times, starting at 2 months (is that “too soon”? as in “too many too soon”?). Their number III (and final) schedule has tetanus 3 times.

Is it possble the Generation Rescue spokespeople don’t know about their own recommended vaccine schedules? Is it possible that in months of planning, Jim and Jenny never prepared for what is one of the most obvious questions?

Jenny. McCarthy has awarded herself an honorary doctorate from Google U in vaccines and autism. From the above exchange with Arthur Allen, it looks like she and Mr. Carrey just failed their “Google SAT” in the “alt-med” view of autism and vaccines. (Let’s not even go down the path of how badly they would fail the entrance exam to Google kindergarden on the actual science of autism and vaccines.)

Don’t look for them to get caught like this by a journalist again. First, don’t expect real journalists to get access often. If they do, all future questions will likely be met with “Generation Rescue has some alternate schedules on their website”. (without noting that “alternate schedule” means “measles outbreaks are Jim-Dandy”).

This time, however, there was a real journalist and he caught them unprepared. Now we know that Jenny McCarthy and Jim Carrey have basically no depth to their understanding of even the alt-med version of vaccines and autism. Anyone surprised?

But, hey, the day wasn’t a complete waste for Jenny. Access Hollywood named Jim and her the “Green Couple of the Week”. Can someone find this Grand Award on the Access Hollywood website? I admit I didn’t try hard (I’m not trying for a Google Ph.D. in “Access Hollywood”), but is this a…dare we say it….fake award? Sorta like Dr. Corbier and the “Rock Award”? (OK, that one is kinda obscure–tossed in for those who followed the Omnibus too closely.)

Which leads me to the last thought–Jenny has a Google Ph.D. and a fake award…heck, if she could just use the library and go to a couple parties at UCSF, she could be an expert witness for the Autism Omnibus. (Think Vera Byers).

Art, should you read this, I (without consultation with anyone) award you the “LeftBrainRightBrain” Award for Excellence in Journalism. For those who will accuse me of making it up right now–ha!, I made it up a few weeks ago and secretly gave it to AutismNewsBeat.

Autism Recovery

8 Jun

I don’t get autism recovery. I don’t get what its supposed to be. I’ve been told (as has the world) that chelation can offer a 100% recovery, leaving the child indistinguishable from their peers.

I’ve been told that recovery means that a child no longer carries a diagnosis of autism.

I’ve been told that recovery simply means a previously non-vocal child now speaks.

I’ve been told that recovery is not the same as cure, but nobody gave me a cogent reason as to why not.

I’ve been told that recovery means a child can attend a mainstream scholastic setting.

There are so many ‘recovery’ merchants on the web (and also in Washington DC last Wednesday) who all want to tell the world that ‘recovery is possible’ and that their child is ‘recovered’.

On a popular biomed site for example there is a section where parents have sent in stories of their kids recovery. Oddly however, only 7% of those stories recount a child no longer having a diagnosis of autism.

Over on Kristina’s blog, a discussion regarding Jenny McCarthys latest interview turned up this nugget:

Jenny was jumping all over the board last night in the interview with Greta. She used “recovered” and “recovering”, then seemed to say that he was still autistic, but didn’t have any symptoms at all any more.

She stated that Evan had been diagnosed as autistic in the past, but that his current neurologist says that he never had autism. She reconciles this discrepancy as proof that Evan has been cured by her interventions.

McCarthy (who maybe concidentally was apparently still smoking in 2003/04 – two years after her sons birth) related an incident from May 2007 at the recent Autism One event:

Evan still suffers from seizures, the last one, he just had last May that no one kind of knows about yet, was horrible. He seized on and off for seven hours and then we had to put him in a coma for four days to make him brain dead to stop the seizing because he’d previously gone into cardiac arrest, and there’s so many kids out there with seizures had passed because of that reason. We had to induce a coma, it took him another month to walk again or talk again.

First off that is terrible. My heart went out to McCarthy when I was sent this. I cannot imagine how terrifying that must have been for her – and of course for young Evan too.

But does this sound like a recovered child to you? A child indistinguishable from his peers?

Thank goodness those (no doubt AAP members) mainstream doctors were there to help this poor little boy.

So what is recovery? To me, in all the YouTube videos I’ve seen posted by people convinced their child has recovered it seems most commonly to mean a clearly autistic child who has improved in certain key areas over time and has learnt a variety of coping mechanisms. Beyond that I have no idea.

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