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Autism Hub at USD and on NPR

25 Jun

Under the care of Dave Seidel and HollywoodJaded, the Autism Hub has gone from strength to strength. They are to be massively congratulated for all that the Hub has become.

However, two other people have driven the Hub into new areas this past year. These two people have demonstrated both singly and jointly exactly the ethos I hoped the Hub would have. Parents and autistic people speaking together.

One of the key areas Steve and Bev have worked in is getting the Hub to an academic audience and a public audience. Steve has worked tirelessly to arrange not one, but two Autism Hub based presentations to an academic audience. I’ve blogged it already but the University of San Diego is currently holding a conference at which Autism Hub bloggers are taking a large part.

Autism Hub at USD

Also on this issue, Steve and Bev appeared on National Public Radio station KPBS show ‘These Days’ to talk about the USD conference and the Autism Hub.

You can listen to the show in MP3 format. Bev and Steve do a fantastic job and it was great to hear the personification of the main idea behind the Hub (that of autistic person and parent to autistic people speaking together).

I wanted to offer a hearttfelt thank you to Steve and Bev for doing all that they have. It really does matter and it really is important. Thank you.

“Judge Sanctions Lawyer for Issuing Subpoena to Blogger Kathleen Seidel”

24 Jun

Reprinted from:
Citizen Media Law Project http://www.citmedialaw.org 
Copyright 2007 Citizen Media Law Project and respective authors.

Judge Sanctions Lawyer for Issuing Subpoena to Blogger Kathleen Seidel

June 23rd, 2008
by David Ardia

A federal magistrate judge in New Hampshire has sanctioned Clifford Shoemaker, a Virginia attorney, for abusing the legal process by issuing a subpoena to Kathleen Seidel. Seidel publishes the blog Neurodiversity, where she writes about autism issues. In February 2008, she wrote about a lawsuit against various vaccine manufacturers, Sykes v. Bayer, in which the plaintiffs Lisa and Seth Sykes sought to link exposure to mercury to their son’s autism. (For more on her statements about the lawsuit, see my previous post: Blogger Kathleen Seidel Fights Subpoena Seeking Information About Vaccine Litigation.)

On March 24, 2008, Shoemaker, an attorney for the Sykes, served Seidel with a subpoena in connection with the Sykes v. Bayer lawsuit. The subpoena demanded that Seidel appear for a deposition on April 30, 2008, and that she produce a shockingly broad collection of information, including her bank statements, tax returns, communications with religious organizations, and personal correspondence with other bloggers.

On April 21, magistrate judge Muirhead granted Seidel’s well argued motion to quash the subpoena. The judge also ordered Shoemaker to show cause why he should not be sanctioned under Federal Rule of Civil Procedure 11 for issuing the subpoena.  In response, Shoemaker filed a rambling opposition to potential sanctions in which he asserted that Seidel was engaged in a conspiracy with Bayer and others to harass him, his client, and various witnesses.  (With the help of Paul Levy from Public Citizen, Seidel filed a restrained response that made Shoemaker’s outlandish claims seem all the more, well, outlandish.)

Not surprisingly, the judge didn’t buy any of Shoemaker’s conspiracy theories and in a strongly worded opinion, made it clear that the subpoena was an abuse of the legal process:

Mr. Shoemaker made no attempt to avoid imposing an undue burden or expense on Ms. Seidel. To the contrary, I find that he sought to burden her by requiring production of every scrap of paper related to autism, her web site, her tax returns, and her communications with the government. He improperly imposes a requirement to create documents, e.g., a list of “names of persons helping, paying or facilitating . . . these endeavors.” The documentation sought is exhaustive. . . .

Shoemaker has not offered a shred of evidence to support his speculations. He has, he says, had his suspicions aroused because she has so much information. Clearly he is unfamiliar with the extent of the information which a highly-competent librarian like Ms. Seidel can, and did, accumulate. If Shoemaker wanted to know if Ms. Seidel was in part supported by or provided information by Bayer, he could have inquired of Bayer or limited the Seidel subpoena to that information. Instead he issued the subpoena calling for production of documents and a deposition on the day before he stipulated to dismiss the underlying suit with prejudice. His failure to withdraw the subpoena when he clearly knew that suit was over is telling about his motives. His efforts to vilify and demean Ms. Seidel are unwarranted and unseemly.

In the end, the judge didn’t order Shoemaker to pay a monetary sanction, but he did order the Virginia lawyer to attend ethics training and directed his court clerk to notify the Virginia State Bar so that it could consider disciplinary action on its own. 

Shoemaker and his client have a right to disagree with Seidel and, if they think they’ve been the victims of a conspiracy, to sue her.  But they don’t have a right to misuse the legal system to coerce a critic to “shut up.”  As I’ve noted before, we all lose when we allow that to happen.

(You can read more about the case in our Legal Threats Database entry: Sykes v. Seidel.)

 

This article is reprinted here under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 License. Details on this license can be found on the Creative Commons website.

 

A step closer to ‘transparancy’ in Hannah Poling v. HHS?

24 Jun

For right or wrong, better or worse, the Hannah Poling case is being closely watched by the autism community. Recently, much of the discussion has centered on the fact that we don’t have a lot of the details.

Back in April, the court released a document detailing some of the discussions involving the release of information. You can read about it in the document and in Kev’s blog post about it. But, it seems to boil down to

1) the Polings would like the government’s expert reports made public. If that happened, the Poling’s would release their daughter’s medial records, but only for the HHS to discuss. The medical records would not in themselves be made public.

2) The HHS would like ” to disclose medical information regarding this case* in order for the Secretary to address inaccurate statements that were being made publicly concerning respondent’s position in this case.”

3) The Special Master (judge) notes that since the government’s expert reports have already been released to the public (in one case, posted in full on the internet), the question of making them public is moot.

The Special Master deferred ruling on the question (“styled as a motion for complete transparancy” by the Polings) until June 9. That date has come and gone. Nothing has been made public from either side as far as I can tell. However, on June 12, the following entry was made in the Hannah Poling Docket:

MEDICAL RECORDS [Exhibit(s) #73?78] filed by TERRY POLING. (Attachments: # 1 Index, # 2 Exhibit EXH73, # 3 Exhibit EXH74, # 4 Exhibit EXH75, # 5 Exhibit EXH76?1, # 6 Exhibit EXH76?2, # 7 Exhibit EXH77, # 8 Exhibit EXH78)(Shoemaker, Clifford) (Entered: 06/12/2008)

Hannah Poling’s medical records have been turned over, apparantly for the HHS to review. Based on the docket, it appears that HHS up until now has only had the expert reports as reference [edit: note comments below and another post–the previous statement was incorrect]

I hope that if not “complete transparancy”, at least “some transparency” will be forthcoming in this case.

Dear Mercury and MMR Militia

21 Jun

I want to write you all an open letter to offer you my opinion as to where you are going wrong. Before I do, I fully realise that this is a massive generalisation and that some of you won’t hold all the opinions I’m about to go through. I think though, that many of you do.

Three things prompted this open letter. First of all was David Kirby’s trip to the UK. Second was a comment from Kelli Ann Davies where she expressed surprise that some of us might know/guess/whatever the intentions of the science and medical community. Third was Ginger Taylor’s recent sulk about the AAP. I’ll touch on these things as I go through this.

You have a truly massive credibility issue which grows with every passing year. Once upon a time it was an issue with the science/medical community but now it is an issue with the general public. There are a number of reasons why this is so.

1) You cannot keep your story straight. You have (as I said to Kelli Anne) some first class marketing and PR people. As I recall, Lynn Redwood, Mark Blaxill and Sallie Bernard all have marketing qualifications. You also have numerous leading lights who are very, very rich. This means you have ample opportunity to lever your message into the heart of the US media system.

But that means nothing without a coherent story to sell. You don’t have one. I understand that you have recently talked about how the ‘story of vaccines’ has _evolved_ . That is stretching things more than a little. Its mercury, no its MMR, no its both, no its Aluminium, no its all three, no its all ingredients, no its the very vaccines themselves, no its the schedule they’re given. No – its ALL the above. And don’t forget the mitochondria!

The more ingredients you add to the pot, the more you have to explain why they are causative of autism. You didn’t even manage to do this when you were concentrating on just _one_ thing (thiomersal). The above is not an example of an evolving hypothesis. Its an example of an ever widening hypothesis as one after another, your original ideas have been taken down.

Nowhere is this better illustrated than David Kirby’s stumbling backwards and backwards:

In 2005, David said in a FAIR Autism Media interview:

It’s now 2005…..[W]e should see fewer cases entering the system [cdds] this year than we did last year.

When that didn’t happen he then said:

if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis…..total cases among 3-5 year olds, not changes in the rate of increase is the right measure.

That didn’t happen either.

You started off by pointing an air pistol at a target 20 feet away and missing. You worked your way through Magnums, Shotguns and Miniguns and kept missing. You currently have a canon wheeled right up to within a foot of the target and you’re _still_ missing.

2) Your science is weak and getting weaker. Sadly for you, the onus was (and still is) on you to provide evidence that vaccines in any of the myriad of hypotheses cause autism. Lets hypothetically agree with you that vaccines are in fact, fashioned by Satan and are in fact, tools of population control. That is not the point. The point is: _do they cause autism?_

There is not one paper that passes muster as valid science that offers corroborating evidence that any vaccine, any ingredient of vaccines or any schedule they are administered in causes autism. This is after over 10 years of trying to find one. What you are increasingly left with is a double conspiracy theory. In one barrel of the conspiracy theory, brave maverick doctors are having their research suppressed. In the other barrel of the conspiracy theory, Big Pharma shills are publishing science to refute the various vaccine hypotheses.

Of course, neither barrel is true. The brave maverick docs are not having their science suppressed. It is simply not good enough to pass peer review.

A good example of this is the science experts being presented at the Omnibus Autism proceedings. No Geier’s. No Jim Adams. No Boyd Haley. No Andrew Wakefield. At least, not so far anyway. And this is in the Vaccine Court, where standards of evidence are way lower than in a civil court, where – by the way – not a few of these same researchers science was not good enough to even be entered as evidence.

And you have this nasty habit of shooting yourselves in the foot. Only today David Kirby posted on the Huffington Post about how rubbish the VSD database was. The very same database the Geier’s recently used to allege a link between vaccines and neurodevelopmental disorders.

And the list goes on. The Hornig study? Refuted by Rick Rollens MIND Institute. The Nataf paper on Porphyrins? Liz Mumper, head of DAN! medical admits that even ‘normal’ children have raised Porphyrin levels. The Bernard et al paper? Refuted. Richard Deth’s work? Exposed and questioned.

3) Your choice of media people to represent you is doing you harm. I am not sure how the idea of latching onto Jenny McCarthy as a spokesperson for the anti-vaccine/autism connection came up. There are a few other celebs I can think of with more gravitas than McCarthy. In truth, you couldn’t have chosen worse. Already, she has made a public fool of herself (and you). As has her partner, Jim Carrey, with his ‘lazy ass’ FUBAR and calls to notice ‘warnings from the universe‘.

I understand that these events feel terribly cathartic to you but I would urge you to take off your rose tinted glasses and see how the real world perceives these kind of things. Its not good. Don’t take my word for it, go to a _mainstream_ news source, discount the people you know as friends/associates who are leaving comments and then see what people think.

You have also latched onto the words of Bernadine Healy. I can see why but she (is/was) a member of a paid lobby group that advances the ‘science’ of Philip Morris to put forward the idea passive smoking isn’t dangerous. How desperate do you have to be to turn to _this_ ‘authority’ for backup?

4) You cannot see that you are being humoured. I know that some of you have been very proud of your success in getting involved with things like the IACC and y’know, thats great – well done to you. And then there’s the ‘coup’ of getting the AAP to attend a DAN! conference and ‘work with’ them. But there’s one thing you seem to have forgotten. AAP members are medical scientists. They will go with the decent science.

I read a blog post from Ginger Taylor today which seemed to be telling the AAP their ‘window of opportunity’ to work with DAN! et al had closed due to the fact they endorsed a letter that a paediatrician had written on how to tackle parents who were nervous about vaccination.

Amusingly, Taylor also chided the AAP for not turning up to the ‘green our vaccines’ rally:

I warned that the window would only be open for a short time unless we saw real action, and would probably close around the time of the Green our Vaccines Rally if they didn’t show up for us in some respect.

Well the AAP didn’t show up for the rally and well… this certainly signals that the window is closed. They want it closed. And it looks like they may be locking it.

Can you not understand that to expect the AAP will turn up for a rally which touts such anti-science as Aluminium and Formaldehyde being at singularly dangerous levels in vaccines and Anti-Freeze being in them at all is the height of arrogant stupidity? Surely you cannot be that naive?

The truth is – and I get this from speaking to AAP, NIH, FDA and NHS members – that you had, and always will have, an opportunity to impress them with decent, peer reviewed science. That’s all you’ve ever needed. And that’s what you’ve never had.

5) The future. The person you’ve decided will be your public face is writing another book. <a href="http://stopthinkautism.blogspot.com/2008/06/today-autism-recovery-tomorrow-crystals.html"She says that:

It’s really an Indigo book…….We’re definitely the Indigos, you know, breaking down these walls so this, you know, New Earth behind us can happen.

And what’s your role in this?

…But people aren’t quite there yet and I kinda had to, not lower my vibration, change my vibration to focusing on the world hearing that message. Hearing that biomedical treatment does help these kids.

And then, slowly, you know I can put it in my speeches. and then in my last book I talked about the indigos and crystals. And I’m just like, I’m really following source, kind of I felt the need to do that, I’m just kind of dribbling it here and there until people, you know, have that spiritual awakening of spirituality.”

That’s where you’re going. You’re close to abandoning any kind of rational basis for your beliefs and just becoming Jenny’s followers in an Indigo Spiritual Awakening to herald in the New Earth..

Omnibus Autism testimony: Dr. Lord on what makes autistic kids improve

18 Jun

The following is transcribed by me from the first mp3 file for May 28th. This part starts around 41 minutes 24 seconds.

Ms. Ricciardella: Do children with autism, in general, improve?

Dr. Catherine Lord: Absolutely.

Ricciardella: What percentage? Do you know?

Lord: I mean I think that all children with autism improve in some ways, and how much is highly variable.

Ricciardella: Would that include children who have a regression in autism? Do they improve as well?

Lord: Yes.

Ricciardella: Do we know why?

Lord: No. I mean, some of the improvement seems to be getting back on developmental course. It’s like asking why do normal kids learn to do the things that they do. We can describe how they learn things but that process of how do kids learn to walk or talk when no one is really teaching them, we don’t know. And that’s the same for autism. We know that behavioral treatments make some difference but it’s a relatively small amount of difference compared to that force of development.

I’m not so sure that it’s only behavioral treatments that make “some” difference, but I agree that whatever therapy or teaching is provided, professional or parental, it’s the “force of development” that is the main thing that causes children to…. develop, which I believe is another way of saying, “improve.” I don’t believe there’s anything that one can do to speed up that force of development. Though I think it’s obvious that judicious use of reasonable kinds of therapies would probably help any autistic child make full use of what abilities he or she has to work with at any given point in time.

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Nigerian Neurodiversity

17 Jun

Its refreshing to realise sometimes that there is a world ‘out there’ beyond the West and that they are living with autism too. And whats more, they aren’t considering it soulless, or sucking the marrow out of families, or organising pointless marches for people to exercise their right to blame others, or forming organisations that concentrate on blaming vaccines, or claiming that denying autism was anything except mercury poisoning in the past and now claiming its the vaccine schedule is just the evolution of a hypothesis, or making a tidy profit of the ignorance of parents.

No, what they’re doing is ‘serving humanity’:

Mr. Babatunde Willouhby,a masters degree holder, left his lucrative job to serve humanity by taking care of autistic and children with Down syndrome, amongst others. He is an administrator in an autistic school, named Hope House School, here in Abuja. While chatting with him recently in his office, I saw in him a man with passion for dealing and caring for a special group of children with slightly different behavioral pattern from those who the society will tag ‘normal children’.

and

Mr Ayiem……said the value he attach to the welfare of his son does not make him see the money spent as expensive, but an investment which is worth giving any individual with confidence that, though it will take time, his son will be independent some day.

and most of all

….socially people see it as a stigma, but I don’t. I have had occasions where I go out with her to supermarket, church and social gathering and you notice people looking at you in a particular way, but I don’t care because she is my daughter. I give her all my love and I display it publicly. I want her to know that she is one of the must loved children in the world.

………..

autistic children and children with Down syndrome can contribute significantly to the society ,if only they are accepted. When we are at home for instance, we help her with her school work by showing her what to do and what behaviour is proper. Of course, like any other child she may go off the track but we help her to do the right things.

……….

If you play any song on radio or on CD and ask who sang it, whether American or Nigerian, she will tell you the name of the artiste. How she knows the name of the artiste and their songs, I don’t know. So if she wants to take that line, I will encourage her all the way. Wendy to me, is one in a million and for me she is a normal child.” From this discussion with Mr Ojugbuna I saw the picture of a father who believes in his child and that was reflected in the behavior of Wendy.

Nigeria is classed as a developing nation (what used to be called ‘third world’). I’d say that in my opinion it has developed a whole hell of a lot further and faster than some people I can think of over in this supposedly enlightened culture.

More Talks for David Kirby

16 Jun

According to his HuffPo blog David is giving some more talks. This time not in the uninterested UK but in the NE US.

David says:

I sincerely encourage any and all vaccine-autism skeptics, critics, agnostics and cynics living in the northeastern US to please consider attending one of these talks, armed with all of your most pointed, difficult and critical questions.

I have some questions which, had family circumstances allowed, I would’ve liked to have asked David when he was over here. What I hope is that NE US skeptics who might be attending, will ask some of the following questions.

1) Given your book is subtitled ‘mercury in vaccines and the autism epidemic’, do you feel it has now been scientifically established that mercury in vaccines does not cause autism? If not, what peer reviewed journal published science touching on mercury in vaccines do you believe supports your books subtitle?

2) You say that during the talk(s) you will discuss ‘The Poling Case – in which the government conceded that vaccines induced autism in one little girl…’. Could you read out the statement from the government where they provide this concession – that vaccines induced autism – and also tell us where we can read it for ourselves, including the location of the source document.

3) Do you agree with Professor Sander Greeland (PSC witness for the families in the continuing Omnibus Autism Procedings) that if vaccines did cause autism and were responsible for ‘an autism epidemic’ that would be detectable in the epidemiological literature? If so, how do you account for all peer reviewed journal published science not establishing an autism epidemic?

4) IN 2005, you said in a FAIR Autism Media interview: ‘It’s now 2005…..[W]e should see fewer cases entering the system [cdds] this year than we did last year.’ – was that the case? If not, does this explain why you then said in a reply to blogger Citizen Cain: ‘if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis…..total cases among 3-5 year olds, not changes in the rate of increase is the right measure.’. Do you consider a severe blow has been dealt to the autism-thiomersal hypothesis?

5) Do you consider yourself a fair and impartial journalist on this issue? If so, could you explain how Wendy Fournier of the National Autism Association built your website? Could you further explain to us where you feel the vaccines-autism hypothesis falls down?

6) You state in your literature that a ‘former NIH director’ has stated autism is an epidemic. Is this Bernadine Healy, former member of The Advancement of Sound Science Coalition who are lobbyists for Phillip Morris and Lorillard Tobacco (amongst others) and claim that second hand smoking is not dangerous? Do you feel comfortable with her stance on medical science issues?

What about you Dear Reader? What skeptical questions would you like to ask – or have someone ask – David?

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.

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