Daubert and the Autism Omnibus

17 Mar

I recently wrote about how the petitioners in the Autism Omnibus were trying to remove the need for their evidence to be scientific by fighting against the ‘daubert’ principle. I concluded that piece with a downbeat message that it was all too possible for petitioners to remove the need for their ‘science’ to actually _be_ science.

A regular reader (who happens to be a lawyer – no, not Wade) passed on a fascinating document (its 120 (searchable) pages – be prepared) to me which discussed the role of Daubert. My reader passed the link on to me with the explanation:

You will see a Court of Federal Claims Special Master, a couple of law professors, and some federal appeals court judges discussing causation and Daubert in vaccine cases.

Its a big (120 page) document so I’m going to concentrate on what these esteemed bodies thought of the role of Daubert in terms of applying it to the Vaccine Act. First a quick recap.

Oversimplifying things, cases tried under the Vaccine Act have almost no standard of evidentiary proof. That suits that Autism Omnibus petitioners as they _have_ no evidence or proof.

Daubert is usually applied in a _Federal_ court and demands that scientific evidence presented to that court is of a good standard of science.

That’s the basic position. If you want to read more about why these two positions are adopted for the differing courts then read the document I’ve linked to. Its just too big to go into all these things in a single blog entry.

So, ordinarily, Daubert would not apply to cases tried under the Vaccine Act. However, this omnibus proceeding is far from an ordinary situation.

JUDGE VOWELL: Well, let’s pick up on the issue of Daubert and Kumho Tire. Those decisions are mentioned nowhere in our trilogy of cases. In a program such as the vaccine program where there are no juries to be unfairly influenced, what role does Daubert play, or what role should a Daubert analysis play?

MS. GREY: I think that, like you said, in many ways they wouldn’t be applicable. We don’t have juries. We have a very sophisticated fact finder. Federal Rules of Evidence, Federal Rules of Procedure don’t apply here.

So that’s the basic positions. However:

MS. GREY: there is a reason why Daubert developed that is still applicable here, and that is to test the basis for an expert’s opinion. Why do we need that? Because when you have an area that is bereft of evidence like this, you don’t have the normal processes of a trial to test the assumption.

So you don’t have cross-examination that’s going to work as well. You don’t have the opposing evidence that will work as well. And that’s why you probably would be well-suited to take Daubert and apply it in this setting, even though you’re not protecting the jury from junk science. There are other reasons that underlie Daubert that would be applicable here.

And what are those other reasons?

MS GREY: You always, I think, want to probe the underlying basis for whatever opinion is being proffered in the Special Master’s Court. We don’t want to just rely on expert credentials alone. You want to see, was there any adherence to professional or technical standards? What is the basis for the opinion?

An excellent point. Only Daubert can give you this. And surely it would be utter madness to make such a judgement without taking a very careful look at _how_ results were obtained when looking at the results themselves. We know that the ‘science’ presented by the mercury militia is on the surface good but when looked at closely starts to unravel like a badly made sweater.

And here’s a paragraph assured to make the Bradstreets and Geiers of this world blood run cold:

Just like any other witness, a scientist, a doctor is going to be subject to biases, to value judgments that are coming from his own setting that could affect his view on the question of causation, which is why you want the Special Master or the trial Court to still probe the basis for the decision rather than just relying solely on the fact that the expert is making that assertion and is well-credentialed in that area.

Yikes. Will Jeff Bradstreet discover a renewed interest in his family again before this all kicks off?

What else?

Mr GREEN: at some point the idea of, okay, put up, expert, what have you got, is something that needs to be done, and Daubert is doing that under the aegis of Rule 702 and the admissibility of an expert testimony. It could be done at the hearing when an expert testifies, but it needs to be done.

It needs to be done. That’s the bottom line. There needs to be a test of expert testimony and Daubert is the way to do it.

But why? I said I didn’t want to go into the nuts and bolts of the legalities but we should maybe talk about why Daubert, which usually only applies in a Federal court setting, should also apply in a Vaccine Act court according to these people.

MS. GREY:…For 100 years, courts would allow treating physicians to testify about causation or about any subject as long as it was an inference that was the type that physicians normally make in the course of their practice. That would be the test; that we wouldn’t look beyond that. But that, as we keep describing, has changed gradually, especially in the last 10, 15 years. Why? What happened, we had an explosion of toxic tort cases, and there were a lot of experts that were willing to testify about causation without real strong scientific studies…… That brought us Daubert [.]

In other words, the sheer amount of new cases revolving around the issue of toxicity and vaccines led to a situation where it was no longer good enough to waive the standard (or lack thereof) of evidence. To prove toxicity, science had to be science. Hence Daubert. Ms Grey goes on to give a good example:

Let me just give you an example that will seem very exaggerated, but it’ll just show my point. If an infant develops a brain tumor after he gets a measles vaccine, this kind of post hoc reasoning would say, the vaccine caused the tumor. This kind of reasoning is going to be rejected by scientists. Why is that? Hundreds of thousands of infants receive a measles vaccine every year. A few of them will develop brain tumors. That’s the coincidence factor.

One of the fascinating aspects of this document is that the Special Master present – Judge Vowell – is also on the Autism Omnibus case as a Special Master (there are three in total). In reference to a non-expert physician opining that a vaccine _caused_ the problem, she asked:

Is it not, though, circumstantial evidence from which other circumstantial evidence I might reasonably infer causation?

The answer given by both Law Professors was essentially ‘no’:

You could take it into account, but it doesn’t qualify it. In other words, Capizzano (another precedent like daubert) probably in my mind went a little bit too far because it’s relying on the treating physician’s testimony to basically make out the whole case, and I think that that’s not strong enough.

There’s no resolution in this document but it seems clear to me – where an increasing amount of cases revolve around a scientific need for scientific evidence – Daubert will increasingly apply.

Yet more Scientology and Autism

11 Mar

After my post on Friday detailing how one of the ‘recovered’ poster children of Generation Rescue was in fact diagnosed, treated and recovered by Scientologists (people who do not, by definition, believe in psychiatric conditions), I was forwarded another piece of information that really did make me sit back in my chair and wonder where this was all leading.

Dan Burton is a Republican member of the United States House of Representatives from Indiana. He is a firm believer in the autism/vaccine connection, being on record as stating:

“My only grandson became autistic right before my eyes – shortly after receiving his federally recommended and state-mandated vaccines”

He has acted in the interests of various parent led organisations who claim to be autism advocates and has become a powerful voice.

However, as the saying goes: behind every great man…

The people behind Dan Burton include (or used to) one Sarah Elizabeth (Beth) Clay who:

Beth Clay is Congressman Burton’s assistant, and Burton is the Chair of the House Oversight Committee.

This puts Ms Clay in a position of some strength with a man who is in a powerful position. In fact, as we can see Ms Clay has lobbied for SafeMinds, one of the largest antivax/autism movements, on numerous occasions.

Ms Clay also runs her own lobbying organisation BC and A International:

During her Capitol Hill tenure, Ms. Clay’s work focused on several breakthrough issues, including: complementary and alternative medicine, dietary supplement regulation, the epidemic rise in rates of autism spectrum disorders…..issues…..mercury and heavy metal toxicity

However, Ms Clay’s CV also includes other activities that are oddly not mentioned on BC and A’s website. She is a Board Member of the Citizens Commission on Human Rights, an organisation that:

CCHR was founded in 1969 by the Church of Scientology and the internationally acclaimed author, Dr. Thomas Szasz.

Yup, Beth Clay, Assistant to Congressman Dan Burton and hired gun of SafeMinds is a Scientologist, or works with them.

We now have several DAN! doctors who are scientologists, several thiomersal/autism lawyers who are scientologists, a ‘cured’ child who was diagnosed (partly), treated and ‘cured’ by scientologists and now one Congressman who’s advisor is a scientologist. We also have one indirect link from scientology to Generation Rescue (in the shape of Julia Berle, founding parent of that organisation and mother to the ‘cured’ child described above) and one direct link from scientology to SafeMinds in the shape of Beth Clay.

Maybe its worth reminding ourselves what Scientology is. According to ex-scientologist, Roland Rashleigh-Berry, Scientology is:

….a vicious and dangerous cult that masquerades as a religion. Its purpose is to make money. It practices a variety of mind-control techniques on people lured into its midst to gain control over their money and their lives

The founder of this cult, L Ron Hubbard, once said:

Writing for a penny a word is ridiculous. If a man really wants to make a million dollars, the best way would be to start his own religion

Or maybe sell snake oil.

Autism and Scientology again

9 Mar

Awhile ago, I wrote a post the detailed the disturbing links between the DAN! movement and scientology. It transpired that scientology – being a movement that is big on non psychiatric modes of treatments is a good fit for DAN! adherents. Both value detoxification for a range of things and it seems Scientologists have not been slow to ingratiate themselves into the DAN! movement. So far, I’ve identified three Scientologists who are also DAN! Doctors. One of them was involved in the death of a parent of a schizophrenic man in 2002.

One of the darlings of the autism/vaccine movement is Julia Berle who’s son, Baxter, was used in a Generation Rescue advert. Ms Berle is a frequent poster to various autism/vaccine groups. Her signature reads;

Julia, mom to Baxter, recovered in 2005, Founding Parent of Generation Rescue

As mum to a recovered child, Ms Berle’s opinion is sought in many places and she never stints from dispensing the advice she got far and wide.

Baxter Berle was diagnosed (at least partly it seems) by Scientologists. If I may quote myself:

Baxter Berle attended a school called ‘The Learning Castle’ which is an alleged elementary ‘feeder’ school for the Renaissance Academy with which it shares a campus (there seem to be about seven separate units on campus all feeding the Renaissance Academy). Here’s a little bit of information about the Director of the Renaissance Academy, Ann Hazen;

Renaissance Academy is truly bringing education back to life through the use of a full academic program, athletics, the Arts, a warm and caring staff coupled with the brilliant study and educational philosophies of humanitarian L. Ron Hubbard.

Yup, they’re Scientologists too.

So Scientologists had a big say in the diagnosis of Baxter Berle. What about his recovery? I was recently forwarded this email by a member of a autism/vaccine group Ms Berle is also a member of:

— begins —

Re: Opinion of Dr. Nancy Mullan ?
Sun Jan 28, 2007 6:25 pm
— In autisminterventionsocal@yahoogroups.com,
“djberle” wrote:

Hey there,

We used Dr. Mullan to recover Baxter. I like that she stays cutting edge on top of all new topics as it relates to autism. She attends numerous conferences to stay current. I also highly respect her availability to parents and compassion to “work with you” on
all aspects (to include financial to some degree). She cares deeply for our children and wants to help them….Our experience with her was very positive. I refer her often to other local. parents. I also refer Dr. Hirani as she helped us as well.

— ends —

So Dr Mullan recovered Baxter. Dr Mullan is also a Scientologist. She is the Medical Director of the Scientology owned Safe Harbor organisation. She also used Dr Hinari who studied under Julian Whittaker – another doctor with Scientology connections.

Here we have a situation where Scientologists have (maybe) diagnosed, treated and recovered a boy. This boy was subsequently turned into one of the poster children for successful recovery by Generation Rescue (of whom Ms Berle describes herself as a founding member).

Maybe I’m just a cynic but this reeks of ‘set up’ to me.

Ayoub/Yazbak/Fombonne

8 Mar

_Jonathon has posted an excellent summation which I entirely agree with on the Ayoub/Yazbak/Fombonne ‘affair’. I’ll include it here and shut off comments, including a link to Jonathon’s post for you to see references and leave comments._

_My one comment is to say that I think that Fombonne has a case to answer. I also hope that he will. I further think that the critical errors Jonathon highlights show clearly that the more outlandish claims that Ayoub and Yazbak have demonstrated correlation between MMR and autism are unfounded. They should’ve just stuck to the genuine and good quality criticism of Fombonne._

_The floor is now Jonathon’s: _

A Review of the Critiques of Fombonne et al. (2006)
Abstract

The critiques of Fombonne et al. (2006) do point some relevant problems with that study. However, they also use some considerably problematic arguments themselves.

Introduction

Fombonne et al (2006) attempts to correlate data between an increase in the number of cases of the Pervasive Developmental Disorders and vaccine use in school children residing in Montreal, Canada. That research failed to reveal any such correlation. In addition the researchers found a prevalence rate of the PDD’s which match what is seen in the US (Bertrand et al., 2001), the UK (Chakrabarti & Fombonne, 2001; and Chakrabarti & Fombonne, 2005), the Faroe Islands in Northern Europe (Ellefsen et al., 2006), and matches data on Autistic Disorder in Japan (Honda et al., 2005)

Recently, two web based articles have been released and promoted based out of the National Autistic Association website. These articles were written by Dr. David Ayoub & Monica Ruscitti for one letter and Dr. Edward Yazbak for the other. These authors raise important and damaging points which call into question the validity of Fombonne et al. (2006). I note however, that not all the points raised in these critiques have equal merit; in fact some of the points raised are most notable for their lack of merit. The points raised in the critiques are discussed below.

Review of Ayoub & Ruscitti

The authors point out that Fombonne et al. (2006) only uses data from only one of Montreal’s five school districts. This district is specifically an English speaking section. The authors accurately point out that a selection bias may have occurred here. In addition the authors note that Fombonne et al. (2006) claimed they could not gain access to the other school districts’ data. The authors then claimed they gained access to this data and make specific claims about a notably higher rate of autism in the school district Fombonne et al. used. I note that these data and analysis methods are absent.

The authors note that English is only the third most common language in Quebec, the largest group being French and the second largest being assorted foreign languages. The authors note that access is restricted to the English speaking school district by a law designed to help protect the French language. However, the authors simultaneously make the claim that this English speaking school is more inclusive than the others. This claim seems contradictory. It is possible that while the English speaking district is more exclusive in general it is in fact more inclusive towards students with disabilities. However this point is not explained.

The authors correctly criticize Fombone et al. (2006) for describing thimerosal laden shots as “nil”. The authors go on to describe vaccines in Canada that continue to use thimerosal. However, the authors fail to note that none of these vaccines are actually required any longer and for that reason exposure should not be comparable.

The authors mention that fourth graders largely participated in a voluntary vaccination program for Hepatitis B, which contains thimerosal. However, the DSM-IV mandates that Autistic Disorder first appear in a child by age 3, even if it is diagnosed later. Fourth graders do not develop autism. Also, and rather remarkably the authors cite Roy et al. (1999) which is concerned with the health and safety including vaccination based on high risk behaviors of street youth in Montreal. The median age of that study was 19.5.

The authors criticize Fombonne in the following terms:

“he ignored the fact that autism rates increased following a doubling of the MMR exposure after 1996 when a second MMR shot was added to the immunization schedule and chose to emphasize that a rise in PDD rates coincided with a decline in MMR coverage rates. Obviously the increased amount of administered viral load to the population was far greater influenced by a doubling of shots administered than by a marginal drop in immunization coverage rates. He likewise ignored the potential impact of mass measles immunization campaigns in Quebec that delivered a second dose of measles to a large number of infants and children throughout 1996. (11) The subsequent rise in PDD shortly after that campaign is clearly depicted in their figures and would lead us to believe this observation supports an association between PDD and MMR exposure.”

The above assumes that the drop in thimerosal was not only made up, but actually exceeded by the increase in MMR dosage. For this explanation to work, one must simultaneously assume that both thimerosal and the MMR can cause autism. A more parsimonious explanation would be that the rate of autism would have risen regardless, which is certainly what we see in other locations including the no longer mandatory thimerosal exposure in California.

The authors also state:

“Numerous reports of higher PDD rates among immigrants have been reported in Canada and other industrialized countries.”

This claim is demonstrated no where in any research. It even seems to contradict some actual research (Kamer et al., 2004).

The authors go on to assert:

“Finally the paper’s observation about rising PDD rates seems to contradict Dr. Fombonne’s well-known contention of the lack of evidence of an autism epidemic. In an Inserm interview, Dr. Fombonne said, “to declare an epidemic, or sensible increase of the prevalence, it would take incidence studies, always the same, year after year, but this data is not available in any country.” (12) The database we obtained from the MEQ represents the type of dataset Fombonne stated was required to detect true increases in PDD. According to one Montreal-based autism organization, data from the MEQ revealed an increase in annual PDD cases in Quebec from 410 (1990-1991) to 4,483 (2005-2006), a nearly 1,000% increase over 15 years. (13) This is staggering and is strong evidence of a real rise in neurodevelopmental illnesses that cannot possibly be solely genetic in nature but supports an environmental etiology.”

The above statement is presents a false problem. An increase in this data set may not be attributable to real change in the actual number of cases. The system could be open to a lack of control for the six threats to statistical validity. This is a well known problem in other administrative data sets in the world of autism.

Review of Yazbak

The author submitted an letter to the editor detailing concerns about uptake of the MMR rate in Montreal and the increase in the PDDs. The editor forwarded this comment from Dr. Fombonne:

“This person is known to pursue the MMR-autism agenda at all
costs in order to ‘demonstrate’ a link he strongly believes in. The only way ahead is to encourage him to do independent research. All controlled epidemiological research thus far has concluded to the absence of such a link.”

the editor of the journal had this to say:

“As a note, I believe the evidence of no link between MMR and Autism is sufficient. It’s not worth publishing more on this subject. We will not be publishing this exchange of correspondence.”

I disagree with Dr. Fombonne’s approach to this situation. It is not relevant that Dr. Yazbak believes in a vaccine etiology of autism. I also disagree with his failing to address Dr. Yazabak’s criticisms which are specific and serious.

I also heartily disagree with the editor’s refusal to publish Dr. Yazbak’ criticism. While it is certainly his job to ensure that all matters within the journal merit inclusion under a serious scientific aegis, Dr. Yazbak’s criticisms are specific and fall into known categories of scientific criticism. Whether or not he believes it has no beating on his responsibility to publish scientific criticism.

However, given the title Dr. Yazbak selected “Far-Fetched”, perhaps the editor had ground to refuse this letter or at least demand that it be re-titled. Pediatrics is a serious academic journal of high standard. In most such journals while a given level of sarcasm and dismissiveness is permitted, this seems to have crossed the line of acceptability.

Dr. Yazbak goes on to assert:

“When he was in France, Dr. Fombonne was a well known psychiatrist who published articles on psychiatric topics. He was still a psychiatrist when he moved to England …until Andrew Wakefield suggested that the link between MMR vaccination and autism should be further investigated and suddenly …Dr. Fombonne became a “psychiatrist / epidemiologist” and a consultant to the UK medical authorities on MMR vaccination and autism”

The Wakefield controversy began in 1998. So:

Fombonne, E. (1996). Is the prevalence of autism increasing? Journal
of Autism and Developmental Disorders, 6, 673–676.

Fombonne, E. (1997). The prevalence of autism and other pervasive
developmental disorders in the UK. Autism, 1, 227–229.

QED.

The author further asserts that:

“It is obviously customary to disclose sources of funding, Disclosing sources of “Non-Funding” on the other hand is unusual. In any case, it is nice to know that Dr. Fombonne’s research was never funded by the “Industry”.”

This is easily explainable in that Dr. Fombonne’s work has been informally criticized as being supported by the pharmaceutical industry, possibly with the intent that he would manipulate the data in favor of finding no association. This statement may have been given to help put such non-sense to rest.

Conclusion

It is important to remember that the weak criticisms in the critiques above do not remove the genuine and quality criticisms. The authors do point some genuine problems. The failure of both editor and Dr. Fombonne to make adequate response is also disagreeable.

By the same token some of the criticisms are remarkable for their lack of relevancy or factual basis. There are problems with these critiques that have a real potential to mislead others. It is to be hoped that the NAA and the authors will take steps to amend this, leaving their better criticisms intact.

See references and leave comments on Jonathon’s site.

Airbrushing science from causation

4 Mar

Another update from the Autism Omnibus proceedings. This one I find worrying. It essentially presents two things for the courts consideration from petitioners (those who think vaccines cause autism):

1) That the scope of the hearings does _”not”_ :

…limit the scope of these proceedings to only those cases with a formal diagnosis of autism

2) That ‘Daubert’ is not utilised as the evidentiary standard.

The first one I find very worrying indeed. This essentially opens up a never ending series of possible cases surely? It also raises the ugly question of the honesty of the people raising this legal case. These are parents who hitherto have described their children as those who have been made autistic by vaccines (either just thiomersal or just MMR or a combo of both). Now, apparently, it is enough that:

…the injuries at issue here include neurodevelopmental disorders _similar_ to autism…

I have to wonder: just how many of these 4,700+ children have actually been diagnosed as being autistic? And how many are children being made to act as Trojan horses for a possible cash windfall for their parents? A disturbing, uncharitable thought to be sure but I don’t know what else to make of this.

Even more worrying is the petitioners attempts to make sure Daubert is not used as the means of determining evidentiary standard.

Lets remind ourselves of what Daubert is. Daubert is a legal precedent which:

[is] raised before or during trial, to exclude the presentation of unqualified evidence to the jury. This is a special case of motion in limine, usually used to exclude the testimony of an expert witness who has no such expertise or used questionable methods to obtain the information.

In plan terms it means that crap evidence cannot be presented to a court. I’m going to quote from Wikipedia directly:

In Daubert, the Supreme Court ordered federal trial judges to become the “gatekeepers” of scientific evidence. Trial judges now must evaluate proffered expert witnesses to determine whether their testimony is both “relevant” and “reliable”; a two-pronged test of admissibility.

a) The relevancy prong: The relevancy of a testimony refers to whether or not the expert’s evidence “fit” the facts of the case. For example, you may invite an astronomer to tell the jury if it was a full moon on the night of a crime. However, the astronomer would not be allowed to testify if the fact that the moon was full was not relevant to the issue at hand in the trial.

b) The reliability prong: The Supreme Court explained that in order for expert testimony to be considered reliable, the expert must have derived his or her conclusions from the scientific method. The Court offered “general observations” of whether proffered evidence was based on the scientific method, although the list was not intended to be used as an exacting checklist:
– Empirical testing: the theory or technique must be falsifiable, refutable, and testable.
– Subjected to peer review and publication.
– Known or potential error rate.
– Whether there are standards controlling the technique’s operations.
– Whether the theory and technique is generally accepted by a relevant scientific community.

What this boils down to is this – Daubert ensures that science presented as evidence is _good science_ . The petitioners are fighting hard to try and make sure Daubert does not become the way the omnibus case is judged:

…the notion that Daubert should provide the substantive criteria for resolving general causation issues in the omnibus proceeding ought to be explicitly dismissed.

Why? Well they _say_ its because Daubert is procedural, not practical, that Daubert interprets _Federal_ rules of evidence that do not apply in the Omnibus and that it is based on development of expert evidence through revealing documents which is not available in these proceedings.

Uh-huh, and of course the fact that Daubert demands a _scientific_ level of proof has nothing to do with things. Right.

Hilariously, what the petitioners want is to establish general causation in a Daubert-less series of hearings using a few ‘case studies’ hand picked from the 4,700 and then use _these_ as the body of general causation evidence to go on and establish specific causation in each single member of the 4,700. Stop and think about how poor the state of their science must be if they are arguing tooth and nail to do this.

Let’s not forget that three high echelon members of the mercury militia have all fallen foul of Daubert within the last year when trying to establish quack causes for autism: Martha Herbert, Boyd Haley and Mark Geier all came to realise that quackery and bad science is quickly exposed by such a hearing. And now – all of a sudden – the petitioners don’t want any truck with Daubert. Shocking.

Make no mistake – if they get their way, _which they may very well do_ – then a) these kids don’t have to be autistic and b) no science needs to be presented to establish general causation.

The closest recent bout of idiocy I can think to compare to this was when certain Southern US states stated that creationism was a viable science to be taught in a science class alongside actual science. They went on to win a a legal case as well if I recall. Don’t think that this one can’t be won by bad science too.

Portia Iverson – Strange Son

4 Mar

This isn’t a book review.

This is the the unfolding story of some book reviews about Portia Iverson’s new book ‘Strange Son’.

Ms Iverson is a founder of CAN (Cure Autism Now) and wrote this book about her own son Dov and another autistic boy – Tito Mukhopadhyay. Here’s how an author I once had a great deal of respect for described this book:

Love introduced two mothers, one who lived in India and the other in the United States. Their passion to seek health for their children, both afflicted by autism, brought the two women across continents and over oceans. Each stimulated the other with her fervor to find medical breakthroughs. Their story is exciting and uplifting.

Amazingly (or not so in this day and age) the first customer review is written by Tito Mukhopadhyay, one of the ‘strange sons’ who was ‘afflicted by autism’. Here’s his review:

I am Tito Rajarshi Mukhopadhyay.

The book ‘Strange Son’ felt like a ‘slap’ on my face from someone who mother and I trusted the most.

Overstimulation and puberty stage can be difficult for many like me. But getting recorded in a way like that, ‘hurts more than my Autism’.

‘May the writer find whatever she seeks’.

By the way, I ‘hand-write’ and communicate/write my books (the Mind Tree, Gold of the Sunbeams, Beyond the Silence). Next year my new book (untitled) will be out, which will describe my sensory conditions in detail, so that other authors may be more equipped before writing about them as ‘observers’ if they watch the ‘show’.

Regards to one and all.

Tito Rajarshi Mukhopadhyay

Here’s a young man who patently feels that he was used, presumably as fodder for Ms Iverson’s publishing career.

Later on, in a separate review, Tito comments:

Honest from the author’s perspective. Perception is a tricky business. But some honesty hurts and Mutilates the trust forever.

Indeed. I would agree with Mr Mukhopadhyay that Ms Iverson’s perception of him is probably flawed and coming from her odd opinions regarding the nature of autism. The following is from a review by a Lisa Helt:

I can’t believe anyone could write such cruel things about any human being, much less a child with a disability. She uses the words, “beast-like”, “alien”, “possessed by a demon”, “like a wild beast”.

The next reviewer in this thread is Portia Iverson herself who says:

I never use the terms: “beast-like”, “alien”, “possessed by a demon” to describe my son in my book. This inaccurracy and others make it clear that this reviewer has not actually read the book.

What Iverson fails to note is that Ms Helt did not claim these comments were specifically about her own son, Dov. No, she reserved these words for the foreigner. And as Ms Helt points out, she certainly _did_ use them:

Actually, you did use these terms. On page 129,”When I left their apartment that day I felt as if I’d glimpsed into the mind of an alien being.”; Page 116, “‘Tired’ was hardly an apt explanation for the extraordinary scene we had been witnessing … where food was flying in every direction, accompanied by his odd grimacing sounds…”; Page 117, “I emailed Tito that same night and asked him why he behaved like that at the table, grabbing food and acting like a wild beast …”; Page 126, “He dashed through the house and raced toward the fridge, the first stop on the terrible circuit he could not break free of. He flung open the refrigerator door and wildly rifled through its contents… ‘You’ll never get a publisher with this kind of behavior!’ I commented in a low voice”; Page 127, “Now it seemed as if Tito were possessed by a demon.”;

As commenter Anne Bevington states later on:

An alien, a wild beast, possessed by a demon … the author was writing about Tito, not Dov. I’m sure Tito has brought in a lot of attention and money for the author’s organization, Cure Autism Now. This is the thanks he gets. The author owes Tito an apology, at the very least.

Another reviewer, Linda Lange comments:

One thing I’ve gathered from this book is that the author believes whole-heartedly that calling others strange (including her own son, and those with autism) is okay with her. However, she draws the line at others who question strange aspects of her story. Interesting phenomena which deserves contemplation, especially as it relates to the contrast of the journeys of those described in the book. Conversely, those who are being called strange in this book don’t seem to have much of a say on the matter. Truly, strangely upsetting.

Indeed. I can’t see myself shelling out money on this book.

There’s a number of lessons to be learnt from this. Number one, this is the age of the internet Ms Iverson, don’t expect to remain free of criticism from the subject matter of your books whom you have clearly offended and abused the trust of. Secondly, lying in retorts to reviews makes you look silly.

But thirdly, and most sadly of all, you will get away with it. Here’s a section of the review from one Barbara Fischkin:

As for those of us who are getting some flack for saying we want to “cure” autism and give autistic kids “souls”: Speaking for myself, not Iverson, I think this is the shorthand of busy mothers who do many other things. Curing a child does not mean you eradicate him or her. It means you take the best, and perhaps some of the worst, that he or she demonstrates as a human being, and help him or her to show that to the world in the form that is the most comfortable for that individual. My own son, now 19, would, I am convinced, prefer to speak instead of grunt his very strong opinions. He would prefer to waste less time worrying about his bodily functions and the inappropriate way in which they have a mind of their own. And yes, he would like his old soul back, the one that was killed….

Here we have the continuing example of a parent who believes that they can not only speak for, but unfailingly know the mind of, their autistic kids. Ms Fischkin cannot even take the trouble to look up and see Tito Mukhopadhyay’s thoughts on those who would presume to speak for him:

Perception is a tricky business. But some honesty hurts and Mutilates the trust forever.

Note that Fischkin believes her son’s soul is currently dead. Killed. This dehumanisation is a direct consequence of the thought processes outlined in Strange Son.

Update

Read more from Autism Diva and MOM-NOS and the Autism Demonized team blog.

Dan Olmsted – Autism’s Dick Tracy

2 Mar

Apparently.

Dan Olmsted, who writes for the Moonie owned UPI recently published another interminable piece in his ongoing series on autism (it isn’t really about autism, its about thiomersal causing autism but what the hell…)

In this one, he reveals the shocking results of his ongoing investigation into the private lives of the first set of Kanner’s patients and tries as hard as he can to draw a parallel between them and mercury. This time he’s struck the mother lode.

Patient Frederick W’s father is now identified as Frederick L. Wellman, a scientist who’s collection of papers ‘fill 18 boxes in the Special Collections Research Center at the North Carolina State University Libraries in Raleigh’.

The first item in the first folder in the first box is dated Spring 1922, when the senior Wellman was working toward his doctorate in plant pathology at the University of Wisconsin…..Wellman collected cabbage seeds infected with a common fungus and dunked some of them in a solution of mercury salts and hot water. “The lots treated with mercuric [chloride] were shaken vigorously at first to get thorough contact with the solution,” he wrote.

And that’s not all.

Case 1 grew up in a town called Forest, Miss., surrounded by logging camps, lumber mills, and a national forest being planted by the Civilian Conservation Corps. Forest is 50 miles from the Mississippi sawmills where ethyl mercury fungicides were first tested in the United States in 1929 to preserve lumber, a practice that quickly became widespread;

Case 3 was the son of “a professor of forestry in a southern university,” Kanner wrote….In 1936, he assisted in the planting of pine seedlings in the university’s newly acquired Hofmann Forest. His son was born in 1937. Organic mercury fungicides, including an ethyl mercury brand, were often used to prevent “damping off” or fungal contamination of pine seedlings during that era.

All this led Mark Blaxill of Antivax group SafeMinds to comment:

So now we have learned that Frederick Wellman handled ethyl mercury fungicides that were first introduced to the market in 1929 and that his child was Kanner’s patient No. 2….And we know that cases 1 and 3 grew up around the first application of ethyl mercury products. If that’s not a smoking gun, I don’t know what is…

A smoking gun. Impressive.

Except, lets apply a little less gasping credulity and a little more logic.

Fredrick Wellman’s documented use of ethyl mercury was 14 long years before his son was born. Does ethyl mercury have special time travelling properties no one told me about? And how exactly does Wellman Snr being associated with ethyl mercury lead to his son becoming autistic? By that logic every person who ever worked with ethyl mercury should both be autistic themselves and have autistic kids. Did Wellman inject the ethyl mercury into his scrotum?

And what was he doing during the year of his son’s birth? He wasn’t even in the country:

During most of 1936, Wellman was hunting exotic plant diseases in Turkey, Egypt, and Iran.

Case 1 ‘grew up’ (but where was he born?) 50 miles away from ethyl mercury. Everything else in that particular quote is supposition. Case 3’s Dad once planted seedlings that were planted about the same time that some fungicides that might’ve contained ethyl mercury might’ve been used. Thats a sight to may ‘might’ve’s for me.

Sorry, but this to me is not a smoking gun. Its not even a lukewarm barrell.

Another intriguing thing to note was that, in a follow up paper in 1971 Kanner found only two of his original eleven had had what he termed a favourable outcome. Those two were Wellman’s son and ‘case 1’. I’ll apply some Olmsted logic and conclude that the ethyl mercury obviously mitigated the worst of the ravaging effects of the hellish autism.

Harold L Doherty – at it again

26 Feb

Harold Doherty last week built himself an army of strawmen in order to demoinse the neurodiversity movement. I and many people left comments that were never published so I wrote the above linked post to demonstrate to Mr Doherty how illogical, ill-thought out and just plain old wrong his points were. He never responded but it seems Mr Doherty is never one to let a little thing like accuracy cloud his opinions.

Today I see a post entitled ‘Is The Neurodiversity Movement Ashamed of Lower Functioning Autistic Persons?’ to which the short answer is ‘uhhh, no – whatever gave you that idea?’

Luckily Mr Doherty proceeds to tell us what gave him that idea. Strawmen ++

It seems at times that the Neurodiversity Movement is ashamed of the lower functioning members of the autism world. Autism is defined by the ND movement as simply another natural variation of human wiring.

No it isn’t. That is one _aspect_ of what autism is.

“Autistic intelligence” is defined as a different, perhaps even a superior form of intelligence.

Might be. There seems to be good evidence for extraordinary mental skills in some autistic people.

Doubt is cast on whether lower functioning autistic persons even exist by the more strident ND’ers.

Really? Where? Who says that?

Even autistic persons who have demonstrated no communication skills, engage in seriously and repetitively self injurious and dangerous behavior should not be treated or cured in the view of the ND movement.

Ditto. At some point Mr Doherty you’re going to have to start _providing some sources_ – all this alarmist arm waving is mildly entertaining but ultimately just silly and self defeating.

Recently CNN’s Dr. Gupta featured the story of Amanda Baggs, diagnosed as being a low functioning autistic person, but clearly very intelligent and, with the aid of technology, an excellent communicator. The implied message – even low functioning autistic persons are really quite intelligent and do not need a cure or treatment.

Nothing at all was implied. It seemed quite clear to me. Amanda does not need a cure. I believe she has had some treatments of mixed efficacy at various points in her life. Your implication seems to be – and feel free to turn up and correct me if I’m wrong – that silly old Amanda can’t possibly know what’s good for her and she can have no empathy with other low functioning autistic people, whereas the Great Mr Doherty knows all. He knows for example that silly old Amanda doesn’t know what’s good for her.

Unfortunately Dr. Gupta played into this denial of the existence of truly low functioning autistic persons by continuing a long history of media focus on autistic savants and other high functioning autistic persons while ignoring the sometimes brutal realities which confront low functioning, seriously disabled, autistic persons.

Yeah, or maybe we could discard the conspiracy theory and conclude that this particular piece wasn’t about that aspect of autism?

My autistic son, Conor, is a low functioning autistic person who brings me great joy. I delight in talking about how happy he makes me every single day. But, unlike members of the Neurodiversity I am not ashamed to admit the severe challenges he faces in life and I am not afraid to talk about them publicly.

I wonder how Conor feels about that and whether Mr Doherty would care?

Anyway, the point is that no one I know is ashamed to admit the severe challenges autistic people face in life. In fact, that’s kind of the point. To highlight these kind of things. Here I’ll say it in the plain English that I reserve exclusively for people incapable of appreciating shades of grey:

Autistic people face severe challenges in life. I am not ashamed to admit this publicly. I am however, afraid to talk about them publicly because when I did, various people who wanted to cure their kids were vicious about her. So now I and my wife talk about her in a private closed access blog which is open to friends and family only.

Unless such public discussion takes place there will be no improvements for Conor and other autistic persons like him. Of course that is exactly why the Neurodiversity movement attempts to censor such discussion.

I love accusations of censorship that come from men like Mr Doherty who actively censor their own blogs and refuse to participate in debate. Its always good for a chuckle.

I _think_ Mr Doherty is alluding to the revulsion some of us have for Autism Speaks and their one sided propaganda piece ‘Autism Every day’. We don’t want to censor it Mr Doherty. We (all 748 – so far – of us) want to expand it to truly reflect the reality of ‘Autism Every day’. Not just the self pity bits. If you don’t want these parts included then I think you need to carefully look at how that holds up against your accusations of censorship.

Meg’s blog – update

26 Feb

Just a small update. If you look to your right in section 01 of the sidebar you will note a new link – this is to the latest post on Megan’s blog.

I’ve been aware for awhile that its very difficult for a private access blog to ‘let people know’ when its been updated so now all you need to do is glance and click.

The blog is (and will remain) private access but I know that some of you who I gave access to might’ve misplaced your usernames and passwords. No problem, just drop me a mail and I’ll remind you :o)

Evil neurodiverse rising

25 Feb

Sometimes there’s a sea-change in the atmosphere that you can just sense and following a recent unprecedented few days for autism acceptance I can feel one of those sea changes.

Things kicked off with Jeanette’s family appearance on a US show called Extreme Makeover: Home Edition (very extreme. I understand they literally knock down your old house and build you a new one!). Jeanette has a wealth of experience as an autism mum – 16 years to be precise. I’ll quote from her blog post about the whole experience:

The only positive we wanted to show out of Extreme Makeover was that our children were awesome….and the producer’s made sure that happened. Through them and Ty, Paige, Eduardo, Paulie, and Tanya the world saw that autism is not a disability…we truly thank them for that.

Jeanette, like me, used to believe dire things about autism as I understand it but, again like me, has weathered those storms and come out the other side.

Next up was Amanda’s appearances. First in New Scientist. The New Scientist piece starts with:

“Far from being purposeless, the way that I move is an ongoing response to what is around me,” says the robotic voice that narrates her typed words. The class reacts emotionally – not out of pity but in response to Baggs’s proud and moving appeal for viewers to recognise “the existence and value of many different kinds of thinking”.

(Overall the article is not great but its an acceptable first step maybe).

But Amanda’s next appearance was even better – a two part segment over two nights on a CNN show called Anderson Cooper. Amanda was interviewed by a guy called Sanjay Gupta who blogged his impressions in a (badly) entitled piece: ‘Behind the veil of autism’. A more accurate title would’ve been ‘Behind the veil society has placed in front of autism thus far’. But possibly not so snappy.

It really started me wondering about autism. Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn’t communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn’t help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.

Dr Gupta is using a form of words I might not choose myself but he is at least thinking now and encouraging others to think about the reality of the autistic experience as perceived by autistic people.

I personally think this was an incredibly brave thing for Amanda to have done. She has revealed herself and her home to the eyes of the whole world and I hope that the changes in routine and accompanying stress have not been too much for her. Anyone who chooses to visit Amanda’s blog should know that she’s taking a break to regroup but you are free to leave comments.

ABC recently presented a broadside on our self-obsessed Western cultures entitled ‘Should Parents Worry About Vaccinating Their Children? Fears of Vaccinations Rise, Diseases Reemerge’.

On internet sites, Walther read so many horror stories about vaccines, that so she postponed vaccinating her daughter, Mary Catherine. “Some of the vaccine stories said that if I had my child vaccinated they were going to die of SIDS,” she said. “I’m very protective of my children, I don’t want to do something to them that might cause them harm.” But not vaccinating caused harm. Mary Catherine got very sick with spinal meningitis.

There’s a very simple and easy to understand fact here and its a fact that groups like the NAA, Generation Rescue, SafeMinds, A-CHAMP etc miss again and again: they are urging people not to vaccinate either explicitly or implicitly. This is having an effect on vaccine uptake rates. As uptake rates fall, incidents where people are injured or are dying from vaccine preventable diseases is rising.

In the UK, following the Wakefield induced mass hysteria MMR uptake fell to 70% in some parts of the country. In 2004 mumps cases in the England and Wales rose from 4,204 in 2003 to 16,436. In the _the first month_ of 2005, there were nearly 5,000 cases.

In 2004, authorities predicted that 12% of all cases of MMR related diseases would require hospitalisation. In March 2005, that prediction came true as – out of the 72 reported measles cases -9 were serious enough to require hospitalisation. One boy died from measles. The first measles related fatality in over 10 years in the UK.

The afore mentioned groups can take those figures and those injuries and deaths to their hearts. They are partly responsible. Thank goodness John Stossel has joined the clamour of media figures willing to see this for what it is:

I told McDowell [a vaccine injury lawyer] I thought he was part of the Fear Industrial Complex, scaring people and making money off of it. After a long pause, he said, “True.”

McDowell is simply one of many quacks, ambulance chasers and hysterical flat earthers out there. They had their 15 minutes of fame, failed to come up with any convincing evidence and deserve nothing but recriminations. Anyone who has made money from this scenario should be ashamed of their part in the death and injury of people but as I know from speaking to this class of people – they won’t be.

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