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Bernadine Healy gets it wrong

Following Bernadine Healy’s April 14th post in USNews, Orac dealt her a dollop of respectful insolence which is a very good read, as are the comments.

However, I wanted to do a kind of accounting on Healy’s post, to see just how firm a grasp on the whole situation she has. So, lets start.

McCarthy and Carrey and two colleagues from the autism advocacy group she founded, Generation Rescue…

Oops. Sentence two, first error. McCarthy did not found Generation Rescue, JB and Lisa Handley did.

...and parents are raising legitimate concerns, yet unanswered…

I have been on the front line of this debate for the last six years. Once upon a time the question ‘do vaccines cause autism’ was a legitimate one to ask. But that question has been asked and answered. Since about 2003/4 there have been no legitimate concerns raised by parents or anyone else. The MMR question has turned out to be both a con and the result of bad science. The thiomersal question is just a defunct hypothesis, given that thiomersal was largely removed from vaccines by 2002 and yet autism rates continue to climb. Despite desperate attempts to rebrand the autism/vaccine question (aka when you know you’re right and yet turn out to be wrong, know you’re right with something else) into questions about greening vaccines when simple searching reveals that newborns contain most vaccine ingredients either naturally or via breast feeding. Or the hellacious vaccine schedule despite the fact that the UK for example has a higher rate of autism (1 in 100 vs 1 in 150) but a lower amount of vaccinations.

This controversy might be resolved if we can focus on a few big questions, with an open mind…

Mistake number three. There is no controversy. In the field of science asking the scientific question ‘do vaccines cause autism’, there is no controversy at all. What there is is a very good and well executed media campaign to manufacture one. However, the facts remain the facts – no vaccine, no vaccine ingredient and no vaccine schedule either solely or together cause autism. There is simply no sound science to support that set of ideas. If there is a controversy it is how the media continue to let people stoke the fire of this idea.

Influenza vaccine, mandated here starting at age 6 months…

Mistake number four. As far as I can tell, the flu vaccine is not mandatory in the US. Certainly this article covering the 2008/09 flu season states:

It will not be mandatory for every child to have the flu shot…

Onward.

...a study from Canada last year found that delaying the diphtheria, tetanus, and pertussis vaccination just a few months decreased by 50 percent the risk that a child develops asthma…

Mistake number five. This has absolutely no bearing an autism. The article is entitled ‘The Vaccines-Autism War: Détente Needed’. Not ‘vaccines, asthma, maybe other stuff as and when I think of it-autism war’. As such this strawman argument has nothing to do with autism.

(Side note: Healy says we should read two doctors thoughts on the pros and cons of a flexible vaccine schedule. It maybe will come as no surprise that the doctor who thinks the US needs a flexible vaccine schedule is ‘Vice chair, Section on Complementary and Integrative Medicine’ of the AAP).

The goal is to get all kids appropriately vaccinated…

Mistake number six. The organisation Healy references at least twice, Generation Rescue, have this on the front page of their Facebook Group

“I found that the whole vaccine business was indeed a gigantic hoax…”—Dr Kalokerinos MD June 1995

“There are significant risks associated with every immunization and numerous contraindications that may make it dangerous for the shots to be given to your child…”——Dr. Robert Mendelsohn MD, pediatrician

Onward again.

...Hannah Poling, for example, who has an underlying mitochondrial disorder and developed a sudden and dramatic case of regressive autism after receiving nine immunizations, later determined to be the precipitating factor…

Mistake number seven. Nowhere, repeat, nowhere has it been published that Hannah Poling’s vaccines were the ‘precipitating factor’ in her autism. If anyone thinks that it has been published I would like a link to that document. I’ve been asking for this for over a year now and no one has ever managed to show me where this is stated.

What has been said is that following her vaccines hannah showed ‘features of autism’. As I have said numerous times, ‘features’ of autism is not interchangeable with autism. If it was, then the medical report co written by four doctors including Hannah Polings father Jon Poling would have simply said ‘autism’. In fact, this medical case study listed a number of symptoms (over 20) of which only three were found on the DSM (IV) (the official diagnosis for autism). She may well have been autistic and she was determined to have been vaccine damaged but that does not automatically mean one caused the other and in fact by the lack of any of the many other symptoms needed to reach a diagnosis of autism, we can see that they were not.

Amd again, onward:

Other children may have a genetic predisposition to autism, a pre-existing neurological condition worsened by vaccines, or an immune system that is sent into overdrive by too many vaccines, and thus they might deserve special care. This approach challenges the notion that every child must be vaccinated for every pathogen on the government’s schedule with almost no exception…

Not exactly any mistake here but this is very misleading. Its well know already that some kids do have conditions that are not amenable to vaccines. Less than 30 seconds of searching the CDC website led me to the appropriate information. I think it is incredibly disingenuous and very ignorant of Healy to comment in the manner she has.

Onward we trudge through the morass.

Paul Offit, an infectious-disease expert from the University of Pennsylvania who has been a frequent spokesman and adviser on vaccine policy (and by his admission has become wealthy by developing the now mandated rotavirus vaccine)

Mistake number eight. The Rotavirus vaccine has never been mandated anywhere that I can see.

So this is Dr Bernadine Healy, a scientist with 125 records in PubMed. Impressive until you realise that, just like this, they are 125 blog entries from US News. That means we can say that on average Healy has got 1,000 mistakes into PubMed.

Good going Bernadine.

29 Mar 2009
  • Author: Sullivan
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Features of autism

I was planning on writing something about this for the 1 year anniversary of when the Department of Justice concession to Hannah Poling was leaked.

Why wait until now? Because it was basically impossible to discuss this last year. Immediately after the leak, the phrase “features of autism” was made into a running joke. The vaccines-cause-autism people all made great fun of how the government coined the phrase, presumably to avoid using the simple word, autism.

Anyone want to go back and look at the document now? Search for the word “features”.

First hit:

Dr. Zimmerman observed that [Hannah Poling] watched the fluorescent lights repeatedly during the examination and would not make eye contact. Id. He diagnosed [Hannah Poling] with “regressive encephalopathy with features consistent with an autistic spectrum disorder, following normal development.”

Note that that’s in quotes: “features consistent with an autistic spectrum disorder”. That’s right, Andrew Zimmerman, Hannah Poling’s own neurologist used the phrase “features of autism” about her, long before the Department of Justice ever did.

This is the same Andrew Zimmerman who submitted an expert report on Hannah Poling. This is the same Andrew Zimmerman who wrote an expert report, for the government side, in the Autism Omnibus Proceeding.

Not the only place “features” is mentioned in the Rule 4© report, either:

Second Hit:

[Hannah Poling] was evaluated by Alice Kau and Kelley Duff, on May 16, 2001, at CARDS. Pet. Ex. 25 at 17. The clinicians concluded that [Hannah Poling] was developmentally delayed and demonstrated features of autistic disorder.

So, why is it surprising that the Department of Justice would write:

In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations [Hannah Poling] received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder.

That’s the third place that “features” is used in the concession document. But, hey, it isn’t funny to talk about Hannah Poling’s own specialists describing her as having “features” of an autistic spectrum disorder.

It is very easy to make more out of this than is warranted by the scant information we have available. We don’t know what is in the rest of the documents that were provided as part of the case. What we do know is that the U.S. government did not create the phrase “features of autism” to describe Hannah Poling.

David Kirby on mitochondral autism

Over the last few months David Kirby has been talking about a new paper that would be forthcoming that would postulate a link between autism and vaccines via Mitochondrial disease. He claimed to have some inside knowledge of this due to interviewing one of the co-authors.

That co-author was Richard Kelley and that paper has indeed been published prompting another excited flurry of posts from David on the Huffington Post. I know it was Richard Kelley as I’ve also been conversing with Dr Kelley via email. Following David’s initial post on the subject several months ago, amongst many other things Dr Kelley expressed:

...furor and frustration that we all feel right now is due to the very poor way in which this has been handled by several people each trying to claim an undeserved 15 minutes of fame.

It was easy to tell that here was a man who was immensely angry but was determined not to discuss any results – possible or actual – until they had gone through the rigour of peer review.

A day or so ago David published a post about this new study but I have to say that in my lowly opinion it left quite a lot unsaid and inflated the significance of what it did say.

David made much of key sentences of this paper (Cherry picking) and really the overall importance of it was a bit sidelined. For example, David says:

[This paper tackles]..The widespread misconception that Hannah’s case was “unique,” and without any bearing on other autism cases…

Whereas, the actual paper states:

Recently, there has been increased concern regarding a possible causative role of vaccinations in autistic children with an underlying mitochondrial cytopathy. For one of our 25 patients, the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.

That one patient was, of course, Hannah Poling. Now, if there was ever ‘widespread misconception’ that mitochondrial autism was real (which I don’t believe there was) then this paper certainly adds weight to the argument that it exists. However, if David is trying to claim that this paper indicates that autism caused by vaccine fuelled mitochondrial disease is not unique to Hannah Poling then I think he has misunderstood or misread it. One out of twenty-five is pretty much the definition of uniqueness.

David then goes on to claim that this study gives weight to the claim that regressive autism is real. As it happens I agree with that. However, it should be placed in its proper context. David states:

Nearly all of the children in my book regressed into autism – a process that often began almost immediately after receiving multiple vaccinations.

Perhaps that is why the very idea of regressive autism has been cause for derision among many scientists, who insist that the parents were simply too ignorant to “notice” autism symptoms in their children earlier on.

That is, with due respect to David, simplistic and not representative of either data, or testimony. During the Autism Omnibus hearings, Professor Sander Greenland gave testimony (for the petitioners it should be noted) that clearly demonstrated that such scientists as Eric Fombonne clearly accept that regression exists and can possibly account for 28% of autism cases. Thats not exactly science being derisive of parents ideas about regression. However, it must be evaluated on a scientific case-by-case basis. As also testified to during the Autism Omnibus proceedings, parents who thought their child (Michelle Cedillo) had regressed were clearly shown to be in error when video evidence demonstrated obvious indicators of autism prior to vaccination.

However, David suggests that ‘nearly all’ the children in his book were regressive following vaccination. As Greenland showed during testimony. At most, this group of ‘clearly regressive autistics’ (autistic people who allegedly regressed following vaccines) could – at most – account for 6% of all ASD cases. If we take the numbers down to the sort of ‘low functioning only’ cases that I have heard many autism/vaccine believers in then we are down to 2% of all autism cases. This translates to approx 11,200 0 – 21 year olds in America. How this number constitutes an autism epidemic I have no idea.

David goes on:

Most of the children in my book – and Hannah Poling as well – had rather severe physical, biomedical problems associated with their regression. Again, this claim has been met with scorn by many in the medical and science communities, who say that autism is much more of a behavioral/neurological than biomedical condition. Parents and doctors who do try to treat these physical symptoms – with conventional and alternative therapies alike – are singled out for particular damnation by many of these so-called experts.

Firstly, I very much doubt that any parent who is treating a childs illness with conventional therapy has been scorned by anyone. There is however, no epidemiology that associates autism per se with the mainly toxicological and/or gastric issues most biomed parents talk about. The paper states:

Twenty-one patients (84%) had histories of major non-neurological medical problems, most commonly of the gastrointestinal system, with gastroesophageal reflux affecting nine and constipation affecting eight subjects.

The other ‘major non-neurological’ were things already associated with autism or other developmental disorders such as Prader Wili.

Lets also note that none of the symptoms listed by David would be treatable by chelation for example.

This study found 64% had GI dysfunction. This is very high and warrants further study, no doubt about that but…what relation has this to vaccines?

The claim that vaccines cause GI dysfunction revolves around the MMR hypothesis – a hypothesis that has taken an absolute battering of late. It has been established in clinical science that the findings of Wakefield et al cannot be replicated and the original findings that indicated a link were based on corrupt data. Of all the various vaccine hypotheses this is by far the weakest.

There is also the fact that the GI Symptoms listed in the study are common amongst a whole range of Mitochondrial diseases and thus its hard to see what particular significance they have to mitochondrial autism.

David goes on:

VACCINES MAY PLAY A ROLE IN AUTISTIC REGRESSION IN SOME CHILDREN WITH MITOCHONDRIAL DYSFUNCTION
“Recently, there has been increased concern regarding a possible causative role of vaccinations in autistic children with an underlying mitochondrial cytopathy (cellular disorder),” the authors wrote. “For one of our 25 patients [Hannah, who DOES have autism, contrary to claims by Gerberding, Offit et al, who erroneously insisted, without ever meeting the child, that she only had “features” of autism], the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.”

Maybe not – but one must wonder, then, why medical personnel at HHS’s Vaccine Injury Compensation Program conceded that the “cause” of Hannah’s “autistic encephalopathy” was “vaccine induced fever and immune stimulation that exceeded metabolic reserves.”

Inserts are David’s.

Lots of things to cover here. Firstly, David says “VACCINES MAY PLAY A ROLE whereas the study authors say: “..the child’s autism/neurodevelopmental deterioration appeared to follow vaccination. Although there may have been a temporal relationship of the events in this case, such timing does not prove causation.”

I think its pretty clear that the study authors are – at best – dubious that vaccines played a role. They are simply saying what the rest of us have always said: correlation does not equal causation.

David once again insists that HHS medical personnel “conceded that the “cause” of Hannah’s “autistic encephalopathy” was “vaccine induced fever and immune stimulation that exceeded metabolic reserves.”“

Where?

I asked twice in the comment thread that followed where this HHS document was and if we, the general public, could read for ourselves – and in context – these words. I am not suggesting David is lying at all. However, by his own admission David has been wrong more than once on what were previously firmly held opinions. This is nothing that should be being speculated about. We need to see this document.

Lastly, Gerberding, Offit et al were quite right to use the phrase ‘features of autism’. That is the phrase that both the HHS report and the case study (co-authored Jon Poling) used. Some say it is hair splitting but I don’t believe that saying someone has autism is the same as saying someone has features of autism. I’ve expounded on this before for those interested but suffice it to say I have a similar eye colour to Clive Owen. This doesn’t make me Clive Owen (much to my wife’s disappointment).

David goes on:

When I first reported this story, the researcher I spoke to told me there had been 30 children in the study, and two of them (8%) showed signs of brain injury from vaccines. Of the five children since excluded from the final published review, one must have been the second vaccine-related regression.

I very much think David might have been incorrect about that. I’m reasonably sure that Dr Kelley would not have referred to ‘brain injury from vaccines’. Given that the study he has just put his name to has cast doubt on that idea I don’t think its a valid idea.

There follows a series of what can only be called strawmen- this study didn’t do this, didn’t do that etc. For example:

....we now find out that nine of the children (36%) had so-called “multiple regressions,” and nothing in this review indicates that any attempt was made to determine if vaccines, febrile infections, or some other factors acted as triggers in the subsequent regressive episodes.

But in the sentence immediately before that David says:

Most of the children had regressed following illness-induced fever, the doctor told me.

The answer to the ‘question’ is right there. One regression, two regressions, twelve regressions – the Doctor states that regression followed illness-induced fever. In other words, given that these doctors know what caused the regressions why would it be necessary to look for something else? Something else that the authors have stated fairly clearly they don’t see any evidence for. However, as befits scientists discussing something both fairly new and of large public interest, they are careful:

Large, population-based studies will be needed to identify a possible relationship of vaccination with autistic regression in persons with mitochondrial cytopathies.

Thats fair enough I think. However I also think its going to be difficult. Sander Greenland made it very clear that detecting the hypothetical ‘clear;y regressive autism’ (i.e. autism caused by vaccines) was going to be next to impossible in large population-based studies, stating the the case amount was so small it would be pretty much undetectable by epidemiology. How to perform the kind of studies necessary to prove/disprove a relationship in such a small amount I have no idea. We’re basically trying to prove that vaccines trigger a mitochondrial cytopathy that leads to autism in – no matter what David thinks – is a pretty small group of people:

28% of people have a regressive form of autism. In 2003 at a LADDERS conference in Boston, Kelley postulated that 20% of regressive autism is due to mitochondrial cytopathies. CDC says that approx 560,000 of autistic people in the US are between 0 – 21. Therefore 28% of 560,000 = 156,800. 20% of 156,000 = 31,360. That’s about 5.6% of autistic children.

Rare? Not sure. Common? Hardly.

17 Nov 2008
  • Author: Sullivan
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The Taft “Transition to Independent Living” program

Life transitions are an issue one hears about a lot with people with autism.  For young people, transitions to school, from elementary to middle school, from middle school to high school.

But, what about the transition from a school setting to an independent living situation?  What supports are available to make that transition: probably the most important transition?

A while back I heard about a program in “Taft” that targeted this exact transition.  I was somewhat surprised.  First, that there was only one program in California mentioned and, second, that this program was in Taft.  Not that I have anything against Taft, it’s just that my own prejudices made me think that such a program would be in a larger metropolitan area.  The city of Taft, California, is about 60 miles northwest of Los Angeles, in California’s central valley and is home to about 9,000 people.

The program that caught my eye is called “Transition to Independent Living” (TIL) and is hosted by Taft College, one of California’s Community Colleges.  Community colleges are 2 year schools, publicly supported.  They are great places for everyone from high school kids trying to get a jump on college credit, to older adults retraining for new jobs, and a broad spectrum of other people with various goals.

From their webpage:

The Transition to Independent Living Program (TIL) is a post-secondary experience for developmentally disabled adults emphasizing learning independent living skills.

Students are required to live in either the dorm or in a college run house.  Instruction is 5 days a week, 11am to 5pm, and a community integration program is run on weekends.  The course runs 22 months.

Instruction topics include: Meal Preparation, Money Management, Shopping, Housekeeping, Use of Appliances, Safety,  Communication, Transportation, Personal Care, and Interpersonal Relationships.

One thing I really like about this program is that people graduate.

Students are eligible for graduation when they complete the required course work and independently demonstrate the learned skills.  At that time, the TIL staff assists graduated students in transitioning into an independent living situation in their home community.  The TIL program tracks all of our graduates for a 10 year period to measure outcomes of the students and the program.

As a side-track, there is a lot of discussion in California about graduation requirements and special education students.  It is my feeling that graduation represents true accomplishment.  A “gifted” student who skates through high school and gets a diploma didn’t accomplish as much as the student who struggled for every credit.  But, that’s hard for governments to quantify, so standardized testing (CAHSEE) and other requirements are used to determine if someone graduates.  So, to repeat myself, I was much pleased to see that this program offers graduation. But, back to the main topic.

I found the program intriguing enough that I contacted Jeff Ross, Director of  Student Support Services for Taft College with some questions. I had a short list of questions—but in the end spent a long time talking to Jeff about the program. The more I heard, the more I wanted to hear.

Jeff has been with Taft College sine the 1970’s, working with people with developmental disabilities. He has worked a few positions in the area, and was instrumental in starting the TIL program.

One of the valuable assets that the Transition to Independent Living (TIL) program has is their dorms. Dormitories are not standard for community colleges. Taft College had dorms for their football program, but when sports were de-emphasized at Taft in the early 1990’s, the dorms became available for the disabilities program.

As an aside—for anyone who knows Taft even a little knows that “de-emphasizing sports”, especially football, was likely not an easy transition for the community. Taft is a big football town, and the Taft-Bakersfield rivalry is legendary.

The program is two years. The first year the students are in the dorms (about 28 students) and the second year the students are in community residences owned or leased by the college, for a total of 48 students. In dorm or the community, students each have their own single room. This is important for the students as a whole as they learn to be independent. It is important for the autistic students in that it gives them a sanctuary for private time.

I wanted to know if they thought that the location was an advantage for their program. There are some big advantages. Taft is fairly isolated, and they have good community support for the program. This helps the students be comfortable in their community. Students come to Taft from all over California. The students are truly “going away to college”. This last part is very important. The students are truly buying into the program and committing to the program. That commitment aids in their success.

There is a disadvantage to the location in that the opportunities for vocational training in the community are limited. All students work part time, some in on-campus jobs and others in community vocational programs.

I asked about other similar programs either in California or nationwide. He mentioned a program at UCLA, and that there is a national consortium of college presidents who are looking at building similar programs. But the more I heard about this program, the more I wondered why there aren’t more of them. There are some other programs, but they are not residential and many are not as comprehensive as TIL. For example, many community colleges may have a few classes, but nothing on the scale of TIL.

The TIL program is 30 hours/week of instruction with 8 hours per week of vocational training (paid employment). It is quite intensive, with community integration programs during the weekends and seven day a week staff.

One topic Jeff bought up was the fact that Community Colleges are open to all. If you are over 18 or have a high school diploma, you can attend. Many people with developmental disabilities do attend the various California Community Colleges, but without proper supports, they often are not successful.

How successful is TIL? They track graduates for 10 years. Right now, they have 142 grads of which 95% live independently and 93% are employed. I mentioned to Jeff that his screening process might be picking out those who have a better chance at gaining independence, and he was quick to correct me. Their program serves people with mild to moderate disabilities. I have no doubt that they are making a great impact on their students.

Another measure of success is in the area of the use of “supported living services”. These are services provided by the Regional Centers to help individuals with developmental disabilities stay in independent housing. One example would be banking or checking, where helping someone manage his/her budget and pay bills could make the difference in being able to stay in his/her own home. Typically, adults receiving supported living services use about 88 hours per month. Those who have been through the TIL program who use supported living services use 30 hours per month. One third of the graduates use no supported living services.

The program costs the student’s regional center about $29k/year. But, considering the numbers above, it is quite clearly cost effective on a mere dollar basis. This doesn’t even touch on the human aspects.

There is a very important word just mentioned: graduates. The students who complete the program graduate with certificates of completion similar to other vocational programs. Few (16%) ever go back for college level classes as they have that sense of completion and accomplishment that comes with graduation.

The TIL program students go through graduation ceremonies with the rest of the College. There is a second ceremony a month later, as the TIL program continues after the regular graduation date. For the last three years, the TIL valedictorian has been an autistic student.

That brings up the fact that this is an integrated program, with multiple developmental disabilities represented. I asked Jeff about this and found that in the first three years of the program they didn’t have students with autism. When they first came into the program, there was some concern about whether the program should be modified. They decided against modifying specifically for their autistic students and this turns out to have been a good decision.

As noted above, students have private rooms. This is beneficial to the autistic students in giving them a sanctuary of their own. On the other side of the coin, the mix of students and the intense program gives the autistic students models for personal relationships. The autistic students tend to lead academically, helping the other students. The non-autistic students help the autistic students on interpersonal relationships. So, the mix turns into a potential win-win for the entire group.

There is a transition specialist who helps the students integrate back into their own communities with housing and jobs after graduation.

Unfortunately, there is a 3-4 year wait list for the program, which in itself is a big indication of the need for more programs like this. Students typically start after high school transition programs—or at about age 22. Students often start touring the program at about age 16-17, with people starting to show interest in the middle-school to early high-school age ranges.

This really sounds like an amazing program. A really good idea that is making a difference. It sounds cost-effective and, more importantly, a real benefit to the students. I’ll be interested to hear what other people think of this program, but my reaction right now is: Why aren’t there more programs like this?

The TIL program has a website and a video (which I am going to try to get someone to YouTube so I can embed it here).

Link to this post?

If you want to reference this post in your site, use the code below to link to me from your website.

<a href="http://leftbrainrightbrain.co.uk/2008/11/the-taft-transition-to-independent-living-program/">The Taft “Transition to Independent Living” program</a>

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