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Facebook is the new vaccines

11 Mar

I thought I’d maybe travelled a couple of weeks forward in time and was reading a particularly stupid April Fools joke news report when I saw the Daily Mail were reporting:

Of course, we do not know whether the current increase in autism is due more to increased awareness and diagnosis of autism, or whether it can – if there is a true increase – be in any way linked to an increased prevalence among people of spending time in screen relationships. Surely it is a point worth considering,’ she added.

‘She’ in this instance is Professor Susan Greenfield of Oxford University, which just goes to show that even a massively intelligent person can also be a monumental idiot on occasion too. Some other gems of wisdom include:

‘My fear is that these technologies are infantilising the brain into the state of small children who are attracted by buzzing noises and bright lights, who have a small attention span and who live for the moment.’

Buzzing noises and bright lights. I think these opinions reflect the lack of experience Professor Greenfield has with computers rather than any accurate reflection of how a PC or Mac actually works.

Note something about this totally ridiculous piece of journalism. They use buzzwords like Twitter and Facebook that the average uninformed Daily Mail reader might’ve seen but have no real idea about. They also clearly are talking about the opinions of one woman. At no point is any study or science referenced to support this Professors opinions.

In the eighties the Daily Mail was one of those newspapers convinced that ‘video nasties’ (straight to video low budget horror movies) would bring about the end of civilisation. In the nineties they were of course standard bearers for antivaccination beliefs. In the noughties they’ve published a few pieces on the evils of the nasty Intraweb.

But of course what really annoys me about this is the fastening on to autism. Its explained how naturally autistic people function online is a possible example of how the online environment (Facebook, Bebo, Twitter etc) are (oh dear god!) rewiring the brains of our children and making them autistic.

Never mind the fact that most new cases of autism are diagnosed in kids under three whos only interaction with a PC up to that point would be to try and push a rusk into the DVD tray. Never mind the fact that adult autistics are pretty wary of social networks at first. Lets just find another way to demonise autism and blame it on something else for which there is no supporting science whatsoever.

Autism and Insurance

3 Mar

ResearchBlogging.orgOne of my favorite autism researchers is a guy named David Mandell. The reason is simple: he just asks good questions.

For example, he studied Vocational Rehabilitation and compared the results for autistics and non-autistic adults. There’s a guy looking at issues that will matter to me all too soon, and already matter to a lot of people already (people all too often forgotten even within greater the autism community: adults).

He looked at adult populations in psychiatric hospitals and found that many adults diagnosed with schizophrenia may be autistic.

Now he has addressed a big question: how much would adding insurance mandates for autism increase the premiums?

This question comes up a lot. For example, in California one of the big questions has been how can Kaiser get away without providing insurance coverage, even though California has an autism insurance mandate (AB88).

The YouTube video is about the first person to win coverage for therapies like Speech, Occupational and ABA from Kaiser:

Kaiser said this will “Significantly increase the cost” of insurance, with “their actuaries” estimating would be $5 to $7 per member per month.

As an aside, the Kaiser person in this meeting was dodging the question, and it is annoying that the interviewer let her do it. The question isn’t about how much it will cost, but the fact that California already mandates that the insurers cover the therapies and that kaiser is avoiding it’s legal responsibility.

As another aside–this is what insurance is for. We pay a little bit to share the risk. If it costs us all a little bit so that some small group gets help when they need it. We don’t question it when we are talking about, say, therapies for a stroke victim or someone in a bad accident. Why do we question it when it comes down to children with developmental delays?

Pennsylvania recently passed a mandate requiring autism insurance coverage with a $36,000 cap per year. Dr. Mandell works in Pennsylvania and used his state as an example in his paper, Quantifying the Impact of Autism Coverage
on Private Insurance Premiums.

That’s a RBQ (really big question) that comes up a lot when people are working on getting autism insurance mandates in their state: what will the cost be? Insurers, as one could imagine, claim the costs will be big. (again, avoiding the question of whether it is the right thing to do).

I won’t go into the details of the model Dr. Mandell’s team used. It was actually pretty straightforward, just as you would probably expect. Instead, let’s take a look at results. Figure 1 shows the increase in insurance premiums if autism therapies are covered.

Figure 1 from paper

Figure 1 from paper

The y-axis is the percent increase in insurance premiums, and the x-axis is the average expenditure per child with autism (in $1000’s). The model gives estimates for average expenditures from $10,000 to $36,000 (the cap in the Pennsylvania insurance mandate). Estimates are given for 3 different autism prevalences: 2.0 per 1000, 4.0 per 1000 and 6.7 per 1000. Note that 6.7 per 1000 is the same as 1 in 150.

Take a look at the highest estimate: $36,000 per child, 1 in 150 prevalence. Increase in insurance premiums? 2%. Yep, 2%.

Or, in the words of the study authors:

Even in the unlikely event that treated prevalence were to rise to the accepted community prevalence of 1 in 150 children, and per capita expenditures rose to $36,000 per year, the increase in the family contribution would reach $6.53 a month, or $78.31 per year

This may be the same amount as the Kaiser actuaries claimed. They claimed about $5-7 per “member”. Usually “member” means the primary insured (I.e. the parent whose job gives the insurance coverage). If, instead, they mean $5-7 per every insured family member, then Kaiser’s estimate is likely about 4x higher than prof. Mandell’s team’s calculation.

Prof. Mandell’s team recognizes that this $78.31 per year is likely an overestimate.

To that extent, the estimates presented here may overestimate actual increases to premiums, given that some healthcare expenditures would remain the same but now would be associated with an ASD diagnosis.

One reason they give is that many children with autism may already be receiving insurance paid medical treatment, but under a different diagnosis. I.e. doctors may be avoiding the autism label in order to get reimbursed. So, for some kids and some therapies, an “autism” mandate may just shift the costs already being paid by the insurance companies from some other diagnosis to autism.

Another reason why this estimate may be low comes to my mind, even though it isn’t discussed in the paper. I know this is anecdotal, but medical expenses are likely highest for younger kids. That’s when the OT, ST, and ABA type therapies will be most common. It doesn’t make sense that the average expenses would be the same for older kids as for younger kids. So, when they calculate based on $36,000 per child per year, they are likely overestimating the expenditures for the older kids (say ages 10-20).

Another possible cause of over-estimating the expenditures. When they estimate for the full CDC prevalence (1 in 150, or 6.7 per 1000), they are including all ASD’s. People with, say, Aspergers or PDD-NOS have significant challenges, no doubt. However, my guess is that they do not require the same level of medical expenses as someone with autistic disorder. So, by assuming the prevalence for all ASD’s, Dr. Mandell’s group may have overestimated the expenses.

Now, it is worth noting that when one includes ABA in the picture, $36,000 per year may not cover everything. A 20 hour week program could cost more than $36,000.

But, leave all of that out for now. Take the high end estimate and ask, will a 2% increase in premiums to make such a big difference? I know there is a risk of this discussion getting sidetracked into an ABA discussion. But, consider adding 2 sessions a week of speech therapy and/or 1 session a week of OT to a young autistic kid’s life. Think of the difference that could make. These are life-long benefits. Isn’t that worth something comparable to, say, the amount of insurance premiums we pay to cover heart surgeries or other very expensive medical interventions for adults?

Or to put it another way: if my insurance company said, “Sure, we can give your autistic kid these therapies now. But, if you ever have a heart attack, you are going to die on the table because we won’t pay for heart surgery.” I’d sign on the bottom line. No, I am not asking everyone to make that choice, or to sacrifice their own benefits for other people’s kids. But, isn’t improving the life of a young child worth at least as much as what we spend to improve the life of older adults?

James N. Bouder, Stuart Spielman, David S. Mandell (2009). Brief Report: Quantifying the Impact of Autism Coverage on Private Insurance Premiums Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-009-0701-z

This paper has also been discussed in the Translating Autism blog, which is where I found out about it.

Another misinterpreted study. This time they are misusing Israel data

22 Feb

Kent Heckenlively from the Age of Autism blog has recent post up on a study out of Israel on autism. In it, he notes that the “incidence” of autism in Israel actually dropped for a few years

What’s curious, though, is how this population of medical professionals who were supposedly good at identifying and diagnosing autism in 1999, then had a drop of more than 40% by 2002. Did they lose their newly-acquired skills in a sophomore slump? If I’m not mistaken, those were also the years of the vaccine-autism “panic” which began shortly after the publication of Dr. Andrew Wakefield’s article in the Lancet, linking the MMR shot and autism. Was there a drop in vaccination rates in Israel after the Wakefield publication? Did vaccination rates then subsequently go up in later years?

Here’s the figure.

Figure 1 from Israel Autism Paper

Figure 1 from Israel Autism Paper

Let’s do this quickly. The interpretation is nonsense. Start from the fact that Google Ph.D.’s seem to rarely check simple facts using google.

Enter “Israel Vaccine Schedule” into google. The top link is a WHO site.

Take a look at how the MCV (Measles Containing Vaccine) coverage has varied with time.

MCV uptake was increasing steadily up until 2003, when it dropped for two years.

Year MCV Uptake Measles cases
1998 97% 8 (Year of Wakefield paper)
1999 97% 14
2000 97% 36 (year “incidence” starts to drop in Israel
2001 96% 19
2002 98% 2
2003 95% 124
2004 84% 116 (year MCV uptake drops)
2005 96% 2
2006 96% 9
2007 96% 539 (measles spike)

Obviously the drop in autism “incidence” in Israel isn’t related to measles vaccines–the drop in uptake happened after the drop in autism “incidence”. Note that I put “incidence” in quotes. The paper isn’t measuring incidence. I’ll get to that later.

In 2007, something else happened. Measles cases spiked. Yep, 3 years after vaccination rates dropped, there’s a big spike in measles. Are they connected? Possibly. I would want to see information like how many of the 539 measles cases were children 4-5 years old, for example.

Other issues with the paper.

1) they don’t give “incidence” or “prevalence”, really. They are giving the number of people who are getting services for autism. Sorta like the California DDS data. Why is this important? We don’t know how easy it is to qualify for services. We also don’t know how hard they are looking for people with autism. It isn’t the same thing as a measure of all the people with autism.

2) Note that 97.5% of the people with autism are Jewish. About 25% of the population in Israel is non Jewish (if Wikipedia is accurate). So, is being Jewish a “risk factor”, or is there an issue with access to services.

3) According to Mr. Heckenlively, the prevalence of Autism in Israel is 1 in 2,400. I guess low prevalence numbers invalidate studies when they are in Denmark, but not when they are in Israel?

By the way, consider that low “incidence” value for Israel. Now look at their vaccine schedule (I am only listing those for very young children)

DTaPHibIPV: 2,4,6,12 months
HepA: 18, 24 months
HepB: Birth, 1, 6 months
MMR: 1 year, 6 years

Hmmm. Remember how Israel has a low autism “incidence”?

Look at that first big combo vaccine–5 vaccines at once. I guess combo vaccines don’t cause autism, eh?

HepB is given at birth. I guess that isn’t a risk factor either, eh?

Separating out the combo vaccines, I count 28 different vaccines given by 24 months in that vaccine schedule. So much for “too much, too soon”, eh?

Of course, this is stretching the Israel data waaaay too far. Of course we can’t say that the Israel data prove that HepB, combo vaccines and too-many-too-soon are not risk factors. Just like we can’t use these data to support Dr. Wakefield’s hypotheses.

I’m glad to see autism studies come out of new countries. Let’s not use data with big limitations to support our preconceived ideas, shall we?

(note, I made corrections shortly after publishing. These did not change the content substantially. I did change the title to clarify that it is not the Israeli researchers who are misinterpreting the data)

Bad Spin, bad interpretations, bad for the community

20 Feb

I was hoping to move on from the Omnibus decisions. Let’s face it, it’s hard on that fraction of our community that believes in vaccine causation. Also. let’s face it, the decision is so clear and decisive that it is hard to add anything to it or complain about any parts.

But then Barbara Fisher Fischkin chimed in. Her spin is just plain amazing. The comments she makes are exactly (and I do mean exactly) the sort of thing bloggers like David Kirby would tear apart if he were even close to impartial.

You know from the fist sentence that her piece, “Bad Justice, Bad Journalism, A Maligned Doctor And A Dead Mother” is going to be bad:

As an Autism Mom, I spent last week with my head spinning.

You left out some important descriptive words, Ms. Fisher. “As an Autism Mom who believes in vaccine causation…”

Just because you are an autism mom doesn’t mean your head is spinning. I know lots of autism moms whose heads aren’t spinning. In fact, I’ve been watching my local yahoo groups and, guess what, people aren’t talking about the Omnibus decisions.

In America last week, our Vaccine Court very curiously threw a hearty dose of cold water over the widely reported connection between autism and vaccines.

Very curiously? Nice way to diminish what they did. They very carefully and thoroughly splashed an entire swimming pool of cold water on the widely reported belief that there is a connection between autism and vaccines.

She then spends some time on the fact that it is “widely reported”. Sorry, just because you can pull people like David Kirby, Dan Olmsted and that journalism student Ashley Reynolds to tell your story doesn’t make the story true.

I also appreciate the vague nature of “reported”. Reported where? Local newspapers in Hawaii that will accept just about anything and get it on to the news wire? How about reported in the medical literature?

There’s more cold water that can be thrown, but let’s move on.

Now, here’s the comment that got me to blog this:

The Vaccine Court’s decision, like so many complicated matters can be obscured by too much information and, alternately, clarified with a dose of simplicity. So here goes: This year the Vaccine Court, in looking at three specific cases, ruled that, in effect, vaccines and/or their ancillary, toxic ingredients do not cause autism. But last year – with evidence produced by a neurologist father and a mother who is a nurse and an attorney – the court ruled that, in effect vaccines could cause autism. Thousands more cases are pending which it why I believe this matter is far from settled. Ask any bookie: Second guessing an outcome with as many variables as this one is risky business.

After the Hannah Poling story broke, David Kirby and I used to take turns pointing out the misstatements made about the court. Mr. Kirby made a LOT of misstatements. And now, here we have a big one from Ms. Fisher. Care to blog it Mr. Kirby? I know you see it.

The court did not rule on the Hannah Poling case. HHS conceded the case. BIG difference. The Court did not consider the evidence, the court did not make a decision based on the evidence, nothing like what Ms. Fisher is presenting.

Mr. Kirby, if Paul Offit said that, you’d already have a scathing blog post up.

Also, she is misrepresenting the whole point of the Omnibus. “Thousands more cases are pending….”.

Does she have no idea of what is going on with the Omnibus? Here’s a definition of “Omnibus”

pertaining to, including, or dealing with numerous objects or items at once

The whole point of using an Omnibus Proceeding and test cases was so that a few cases could be heard with very detailed evidence and general causation could be applied to the thousands of other cases waiting.

Or, to put it another way, any of the thousands of other cases waiting which are contending MMR caused autism are basically over.

And, guess what, the Petitioner’s lawyers only presented two “theories of causation”. It isn’t like there are that many “variables” as she would like to assert. Each of the thousands of cases is not an individual variable.

Ms. Fisher then moves into the Wakefield/Brian Deer story with

As this was happening in the United States, in England a journalist reported that a certain gastroenterologist who treats children with autism – and whose license over there is under intense judicial scrutiny — fabricated his data. There are, not surprisingly, counter allegations that the journalist strategically created some of the controversy himself so that his story would get more play. This does not surprise me.

It doesn’t surprise me either. Instead, it saddens me that a fraction of my community has acted so harshly towards Mr. Deer in what appears to this reader be an attempt at a smokescreen–an attempt to divert attention away from the possibly very damaging findings Mr. Deer has uncovered about Dr. Wakefield’s work.

Notice that Ms. Fisher avoids entirely the crux of the entire story by Mr. Deer: if the information Mr. Deer has presented is true, is there anything left of Dr. Wakefield’s study to support his idea that MMR causes autism?

Take away even the question of whether Dr. Wakefield knew or should have known the details Mr. Deer presented. If those details are true, even the very weak evidence that Dr. Wakefield presented on MMR causing autism is worthless.

The spin will continue. I believe strongly that fewer and fewer real journalists are going to listen and report it.

[note, I modified this post slightly shortly after publishing it. Substance was not changed]

Cedillos, Hazlehursts, Snyders

12 Feb

Three brave families who were placed in harms way not by an MMR injection but by a string of bad doctors, worse autism/antivax organisations and really terrible witnesses. A combination of these three factors placed these three families – they who stood for the utterly discredited idea that MMR/thiomersal or MMR alone cause autism – into harm the likes of which said doctors and founders of autism/antivax orgs will never have to face. I recall hearing that the Cedillo’s had taken out a second mortgage on their home to enable them to attend the legal proceedings.

I wonder if the leading autism/antivax groups will have enough about them to pony up to support the Cedillo’s for the rest of their lives? They should, they hung them out like a banner to wave.

This is from the Washington Post:

The decision by three independent special masters is especially telling because the special court’s rules did not require plaintiffs to prove their cases with scientific certainty — all the parents needed to show was that a preponderance of the evidence, or “50 percent and a hair,” supported their claims. The vaccine court effectively said today that the thousands of pending claims represented by the three test cases are on extremely shaky ground.

In his ruling on one case, special master George Hastings said the parents of Michelle Cedillo — who had charged that a measles, mumps and rubella (MMR) vaccine caused their child to develop autism — had “been misled by physicians who are guilty, in my view, of gross medical misjudgment.”

Hastings pinpoints the Geier’s, Krigsman and Wakefield by name in his verdict.

And here’s Special Master Vowell from the Snyder test case:

“After careful consideration of all of the evidence, it was abundantly clear that petitioners’ theories of causation were
speculative and unpersuasive.”

….

To conclude that Colten’s condition was the result of his MMR vaccine, an objective observer would have to emulate Lewis Carroll’s White Queen and be able to believe six impossible (or, at least, highly improbable) things before breakfast.

And here is Special Master Campbell-Smith from the Hazlehurt test case:

Because the linchpin of petitioners’ theory, the finding of persistent measles virus in the biopsied tissue taken from the gastrointestinal lining of autistic children, is glaringly unreliable, the basis for Dr. Corbier’s opinion that the MMR vaccine was causally related to Yates’ autism and his gastrointestinal symptoms is critically flawed and scientifically untenable. Petitioners have failed to prove that their theory of vaccine-related causation is biologically plausible as required by the first prong of Althen. Nor have petitioners demonstrated that the unsupported links of their proposed causal chain cohere to establish a logical sequence of cause and effect as required by the second prong of Althen. Having failed to satisfy their evidentiary burden, petitioners cannot prevail on their vaccine claim.

I should be happy that science has prevailed and I am to a certain degree. The fact that the Vaccine Injury Court demands a very, very low standard of proof should indicate clearly and concisely just how good the rubbish submitted as science was for these kids cases.

I can’t be happy and I can’t take any pleasure in the fact that these kids and their families have been coldly, cynically used by those who demand against all reason that vaccines cause autism. How could any right thinking person? These parents are penniless and will no doubt be coerced into taking part in a shame of an appeal, then civil cases. Civil cases where the standard of science is very much higher. I hope they step back and consider carefully the verdicts of the Special Masters, the horrendous quality of their so-called ‘expert’ witnesses and the utter lack of any science to support them.

Fitzpatrick on the recent Wakefield news

11 Feb

Dr. Michael Fitzpatrick has written the article I wish I could have done–

The MMR scare: from foolishness to fraud?

For anyone looking to understand the timeline and the important questions raised by the Brian Deer investigations, this is a must read.

Dr. Fitzpatrick asks a very important question one must consider–if there is such a big disconnect between what the Wakefield papers report and the actual histories of the children (and the disconnects seem to be very significant), shouldn’t the journals print retractions?

Following Brian Deer’s 2004 revelations about Dr Wakefield’s conflicts of interest arising from undisclosed legal aid funding, 10 of his Lancet co-authors retracted the suggestion of a link between MMR and autism (while upholding the paper’s claim to have identified a distinctive form of bowel inflammation in autistic children). It is now clear that, given the selection bias confirmed by Deer – quite apart from his other allegations – it is not possible to make such a claim on the basis of the Lancet cases. Surely it is now time for the authors to withdraw this paper in its entirety? Perhaps the editor of the Lancet – together with those of the other journals involved – could submit Deer’s allegations to some sort of tribunal, perhaps arranged by the Medical Research Council. For 10 years the world of science has witnessed Dr Wakefield’s foolishness; now it has to ask: has he crossed the line into fraud?

Another good source on the Wakefield studies is in Paul Offit’s book “Autism’s False Prophets“.

You may recall that someone has YouTube’d Autism’s False Prophets. Yes, Story Time with Darwin. If you have problems reading or just want to listen in to the sections on Dr. Wakefield, give “Story Time” a try.

There are a LOT of blogs discussing this. I Speak of Dreams is keeping a running list.

Picking a couple–Respectful Insolence has Why am I not surprised? It looks as though Andrew Wakefield probably falsified his data.

Bad Astronomy has Did the founder of the antivax movement fake autism-vaccine link?

It is worth noting that Dr. Wakefield published a statement of his own as In his desperation, Deer gets it wrong once again.

Dr. Wakefield is in a strange position, since the GMC hearings are still ongoing to determine whether his methods warrant disciplinary action. That said, Dr. Wakefield’s statement responds to a letter that Brian Deer sent prior to publication. It is unclear if this response was sent to Mr. Deer before publication, or if any response was made pre-publication. That said, I wonder why Dr. Wakefield didn’t respond to the specific information from the children’s records which contradicts the story presented in Dr. Wakefield’s papers. What Dr. Wakefield does do is offload responsibility to others–other authors and the parents.

The reporting of the children in the Lancet paper is an accurate account of the clinical histories as reported to Professor Walker-Smith and his clinical colleagues.

One comment that has been made to a blog is worth paraphrasing here. Dr. Wakefield comments in his response:

Finally, I did not “create” a scare but rather, I responded to a scare that parents brought to my attention.

Perhaps Dr. Wakefield didn’t “create” a scare. But, what he did was throw gasoline on a lit match. To stand back and claim no responsibility for burning down the house is quite disingenuous.

Strategic Plan: fact and fiction

2 Feb

If you’ve been reading some of the autism blogs lately, you’d think that the only question that the NIH has to consider on autism is whether to study vaccines. That’s because, it’s all the autism organizations seem to be talking about with respect to the IACC and the NIH.

Yes, I’ll admit I’ve contributed to the pervasiveness of the vaccine discussion by responding to those blogs. Just to get that out.

The big stink lately is the fact that the vaccine-specific initiatives were voted out of the IACC’s Strategic Plan in January. Autism Speaks and the small groups like Generation Rescue, NAA, TACA and SafeMinds (as an aside—why are there so many clone orgs? Do they really represent different views?) all issued statements or harsh words about this change.

The story being propagated is basically this: “All the money is going into genetic research. We asked for this small thing and they blocked it”

So, let’s do something different than the vaccine-orgs, eh? Let’s look at some of the initiatives that are still in the Plan. Let’s discuss what is really happening on that front. There is a lot more to discuss about the reality of the Plan, but I figure since no one wants to actually look at the initiatives, it’s fertile ground.

The Plan is divided into section (think chapters) according to “questions”. Let’s look at a few sections and pick a few initiatives out to consider.

Question 1: When should I be concerned?

Identify a panel of biomarkers that separately, or in combination with behavioral measures, accurately identify, before age 2, one or more subtypes of children at risk for developing ASD by 2014. Estimated cost: $30,000,000 over 5 years.

Develop at least five measures of behavioral and/or biological heterogeneity in children or adults with ASD, beyond variation in intellectual disability, that clearly relate to etiology and risk, treatment response and/or outcome by 2015. Estimated cost: $40,000,000 over 5 years.

Holy Moly! I’d expect end-zone victory dances over something like that–$30M for biomarkers? Another $40M that includes biological heterogeneity? Isn’t this exactly what these organizations claim they want—recognition and research into the biological underpinnings of autism?

Instead of victory dances, we get silence from the vaccine-orgs on these initiatives. It’s all “what happened to vaccines!”

Here’s one that I wouldn’t expect them to trumpet, but my eye was captured by this:

Validate and improve the sensitivity and specificity of new or existing screening tools for detecting ASD through studies of the following community populations that are diverse in terms of age, socio-economic status, race, ethnicity and level of functioning by 2012. Estimated cost: $5,000,000 over 3 years.

My eye was captured, but that’s because I am really into the idea of identifying underserved populations like adults, and racial and ethnic minorities. I don’t expect the vaccine-orgs to support this since admitting there are underserved populations threatens the “epidemic”, so I didn’t expect the vaccine-oriented organizations to comment on that.

OK, let’s move on to the next “question”:

Question 2: How can I understand what is happening?

Support at least four research projects to identify mechanisms of metabolic and/or immune system interactions with the central nervous system that may underlie the development of ASD during prenatal-postnatal life by 2010. Estimated cost: $6,000,000 over 4 years.

Whoa! Did I read that correctly? $6M for studies on immune system interactions in the development of ASD? And, from the vaccine-orgs that called for this research? The sound of one hand clapping?

OK, the really big study for this section is this one:

Complete a large-scale, multi-disciplinary, collaborative project that longitudinally and comprehensively examines how the biological, clinical, and developmental profiles of children, with a special emphasis on females, youths, and adults with ASD change over time as compared to typically developing individuals by 2020. Estimated cost: $50,000,000 – $100,000,000 over 12 years.

Again, they are tracking the “biological” side of autism. Not a word of welcome from the vaccine-orgs.

The study above is one of the most critical that the Plan can call for, in my most humble opinion. How many times have we all asked or read others ask, “how will things look into the future?” Wouldn’t that really help answer questions about who “recovers”? Won’t Seriously, wouldn’t it be nice to understand how many people show large gains? Although lets face it, it happens even without “biomed”.

And, yes, I am very glad to see the extra emphasis on adults and females as well, by the way.

Question 3: What caused this to happen and how can it be prevented

This is the section where the vaccine initiatives were shoehorned in. Let’s take a look at what is still in.

Check out this big one:

Support ancillary studies within one or more large-scale, population-based surveillance and epidemiological studies, including U.S. populations, to collect nested, case-control data on environmental factors during preconception, and during prenatal and early postnatal development, as well as genetic data, that could be pooled (as needed), to analyze targets for potential gene/environment interactions by 2015. Estimated cost: $40,000,000 over 5 years.

Wow! $40M in gene/environment interactions. How much closer to the supposed agenda of the vaccine-orgs can one get? And yet, once again, the vaccine-orgs aren’t talking about it.

How about two more initiatives:

Determine the effect of at least five environmental factors on the risk for subtypes of ASD in the pre- and early postnatal period of development by 2015. Estimated cost: $10,000,000 over 5 years.

Conduct a multi-site study of the subsequent pregnancies of 1000 women with a child with ASD to assess the impact of environmental factors in a period most relevant to the progression of ASD by 2014. Estimated cost: $10,000,000 over 5 years.

Another $20M on environmental issues.

I think the point is made—just in this list there are something like $100M to $200M in funding for the biology of autism and environmental factors.

Why don’t the vaccine-orgs talk about these initiatives? One could speculate that it hurts their political maneuvering complaining about the removal of the vaccine initiatives. “Senator, they gave us $100M for exactly what we asked for, but we didn’t get everything”. Doesn’t sound so good, does it?

But, and this is important, these same vaccine orgs weren’t trumpeting the inclusion of all these biology and environment initiatives even before the vaccine initiatives were removed.

That’s why I keep referring to them as “vaccine-orgs”. It seems vaccines are the one and only issue they care about. Sure, they gave some lip-service to environment and biology. But now it’s as if these initiatives don’t exist and aren’t important. If you listen to their spiel: “Poor us, we asked for this small vaccine initiative, but all we got was genetics”.

Genetics? Yep, it is in the Plan. And rightly so, I will add. There is real evidence for genetic links to autism. If we are to understand autism, even environmental causes, we need to have the genetic information. Take this initiative, for example:

Identify genetic risk factors in at least 50% of people with ASD by 2014. Estimated cost: $30,000,000 over 6 years.

That’s a big project, and that’s what the vaccine-orgs would like everyone to think is the core of the Strategic Plan. But, as we’ve seen, it just isn’t fair to paint the Plan as emphasizing genetics while ignoring environment and biology.

There is a big push right now to stall the Strategic Plan (as though it hasn’t been delayed enough already by the constant attempts to rewrite the Plan by Lyn Redwood. If you think I am the only one who thinks this, listen to the last IACC meeting.) Yes, the same organizations who called for research into the environment and gene-environment interactions are willing to stall that research for one reason: vaccines.

Who thinks that TACA or Generation Rescue or any of the other small orgs would sit quietly by and see all this research stalled if it weren’t for the possibility of getting vaccines into the Plan?

Why should the rest of us sit quietly and let them stall progress towards a Strategic Plan that includes good research projects on topics like lifespan issues?

We shouldn’t.

New thimerosal study, altogether now…

26 Jan

…there’s still no link.

‘Neuropsychological Performance 10 Years After Immunization in Infancy With Thimerosal-Containing Vaccines‘ is a new study from Italy.

Nearly 70% of the invited subjects participated in the neuropsychological assessment (N = 1403). Among the 24 neuropsychological outcomes that were evaluated, only 2 were significantly associated with thimerosal exposure. Girls with higher thimerosal intake had lower mean scores in the finger-tapping test with the dominant hand and in the Boston Naming Test.

And here’s the conclusion from the penultimate page of the paper (excluding references):

No study conducted to date has been able to provide conclusive evidence of an effect of thimerosal on neuropsychological development. Final judgments regarding this association must rely on the entire body of results from studies conducted in different settings and with different levels of validity and on the coherence of results. The lack of consistency among the results of our study and other available studies suggests that an association between thimerosal exposure through vaccination in infancy and neuropsychological deficits is unlikely or clinically negligible. Additional data from populations with wider ranges of
exposure to thimerosal and additional neuropsychological assessments at older ages may help to clarify the issue of potential associations between thimerosal and neurodevelopmental outcomes.

Oh, and for the conspiracy theorists:

The authors have indicated they have no financial relationships relevant to this article to disclose.

I’m not an epidemiologist so I’m not going to attempt to go through the nuts and bolts of this paper. Hopefully those who have more expertise can go through yet again why this shows that thimerosal in vaccines seems to be about as dangerous as the average housefly. I can’t imagine they really want to. God knows I don’t. But the stupidniks will no doubt need the finer points hammered home again.

Can you sense I’m getting bored with this yet?

The Guardian – purveyors of bad science

14 Jan

I’ve watched for awhile as the UK media whips itself up into a frenzy over the latest bit of autism research from Simon Baron-Cohen. I wanted to see if they could manage to curb themselves and their tendency to reduce everything to soundbite. Of course they couldn’t. The idea they could is silly.

However, call me an old Lefty but I thought The Guardian might do a little better than it has. It not only started this silly pre-natal testing storm-in-a-teacup, it continues to push it in the most credulous way.

On 12th Jan Sarah Boseley (apparently a Health Editor) wrote:

New research brings autism screening closer to reality

A piece that says:

New research published today will bring prenatal testing for autism significantly closer…

This is twaddle. And yet, The Guardian published an op-ed piece (well, blog post) today from Marcel Berlins which leads with:

The prospect of a screening test on a pregnant woman predicting her child’s autism is not far away, and Professor Simon Baron-Cohen, leader of the Cambridge University research team that developed the test…

Again, twaddle. And twaddle on two fronts.

Here’s the truth stated simply: Baron-Cohen’s work is not going to speed up a pre-natal test for autism. Baron-Cohen did not develop any test.

In a piece in Nature, Baron-Cohen explains:

The Guardian [newspaper] is focusing on the issue of screening. The study is not about screening and it is not motivated by trying to develop the screening test. It was motivated by trying to understand possible causal factors in autism…

So not only is Baron-Cohen _not_ developing a pre-natal test, he is quite clear that his work _will not_ speed up the development of a pre-natal test.

And yet two prominent Guardian columnists are writing as if it was a done deal.

In fact, the misrepresentation of the science involved goes beyond the surface of what Baron-Cohen is _not_ doing but what his work _is_ doing. From the NHS website:

The findings are based on a scientific study of 235 children aged between eight and 10, whose mothers had amniocentesis, a test analysing fluid taken from around a foetus. None of these children were autistic, but those exposed to higher testosterone levels showed higher levels of ‘autistic traits’, such as poor verbal and social skills.

So, lets be clear, *none of the kids in this study were autistic* – so touting this study as a potential shortcut to a pre-natal test is several steps ahead of itself.

The study itself was in undergone to further test Baron-Cohen’s theory that autism is an ‘extreme male brain’ disorder. It is worth remembering that this theory is contentious even within the mainstream autism science community.

Psychologist Kate Plaisted Grant, also from the University of Cambridge…isn’t convinced that the findings support the underlying theory. “The broader scientific community hasn’t accepted the idea of the extreme male brain,” she says. Fetal testosterone “may create a special brain, but it doesn’t necessarily create a male brain”.

Psychiatrist Laurent Mottron…says that just because males and people with autistic disorders score similarly in autism questionnaires, this does not mean that autistic traits are the same as male traits. Rather, he argues, it just shows that the test cannot discriminate between maleness and autism.

“For me, it’s exactly the same as saying that two things that weigh the same are both made of the same stuff,” he explains.

There is also the distinct possibility that autistic women have not been counted accurately in the past. I know I have read some research on this but I cannot put my hands on it. Maybe someone in the comments can help me out.

The Guardian need to take a step back and screw their collective heads back on. There should be a debate about pre-natal testing for autism but to me, its not a debate to have until it becomes a realistic possibility. The autism community has enough on its plate right now without getting into a purely theoretical debate.

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Parental age is a 'risk factor' for autism

15 Dec

A story today talks about how parental age _may_ be a ‘risk factor’ (loaded phrase much?) for autism. According to the studies lead author (Dr. Maureen Durkin of the University of Wisconsin School of Medicine and Public Health):

What we found was that actually it’s both parents age, and when you control for one parent’s age you still see the effect of the other parent’s age, and vice versa,

….

After the researchers accounted for factors that might influence the results, they found that children born to mothers aged 35 and older were 30 percent more likely than those whose mothers were 25 to 29 years old to have been diagnosed with autism. Having a father who was 40 or older boosted risk by 40 percent.

The study didn’t really look at why this might be but they did do a bit of educated blueskying:

Older parents have had a longer time to sustain genetic damage to their sperm or egg cells, as well as to store up environmental contaminants in their bodies.

They are also more likely to have used assisted reproduction technologies, which have been tied to poor pregnancy outcomes. And there could be something about the behavioral traits or psychological makeup of people who wait to have children that boosts autism risk in their offspring.

Which is all a fancy way of saying: I got nuthin’ so here’s an answer that covers everything. Which is fair enough, it falls totally outside the remit of the paper to answer those questions.

So now you can expect a whole bunch of people to cast aspersions on this study, relating how really they were only 19 when they had an autistic kid and that its all a big conspiracy to detract from the evil vaccines. Whatever.

Its quite an interesting study, the most recent of many that look at (and find a connection) between parental age and autism. Does it move us forward in terms of causation? Nope. Does that really matter? Nope. Its still nice though to see science being done that is just that most important of work – the hog work that starts to fill in the blanks of the most basic facts surrounding an issue. Thanks to this study and those preceding it I think its fair to say now that raised parental age is a factor in autism causation. Not always but sometimes.

Another interesting bit of blueskying:

The findings could also help explain why autism appears to be on the rise in the United States, the researchers added, since the percentage of children who are born to mothers 35 and older and fathers 40 and older has risen steadily since 1980.

I think this is a very interesting hypothesis to follow up on and I hope someone does. But first of all of course we need to establish _if_ autism is ‘on the rise’. Many people will tell you there’s an epidemic of autism but there is in fact no valid evidence to support this supposition. I hope some evidence can be forthcoming. We need it.

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