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Are autism organizations acting in good faith?

19 Jan

As one might imagine, this is a follow up post to Kev’s post, Did the IACC act in bad faith?

Obviously, much damage control is ongoing right now. Some autism organizations were hoping for a document from the U.S. Federal Government indicating that vaccines might be implicated as a causal factor in autism. No surprises there. They managed to get some language and a possible research project into an early approval stage for inclusion in the IACC’s Strategic Plan.

Now, these same autism organizations are crying foul that the vaccine language was removed. Autism Speaks has pulled support for the Plan under the cover story that they are upset at the process–that a “previously voted-on decision” was revisited without “forewarning”.

Autism Speaks today decried a vote by the Interagency Autism Coordinating Committee (IACC) to reverse a previously voted-on decision to approve objectives relating to vaccine safety research as part of its deliberations for the Strategic Plan for Autism Research. The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December—would be revisited. As a result, Autism Speaks is withdrawing its support for the Strategic Plan.

Bob Wright, founder of Autism Speaks, stated “Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

So, this wasn’t on the agenda, so it is a “surprise tactic” and this is why the process is “tainted”. Somehow, this just didn’t ring true to me when I read it.

Anyone else check the actual agenda? In case you don’t want to click on the link, here it is:

Time Event
8:00 Registration
9:00 Call to Order and Opening Remarks
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
9:05 Brief Introductions of IACC Members
9:10 Review and Decisions: IACC Strategic Plan for ASD Research: Introduction
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
10:40 Break
10:45 Continuation – Review and Desicisons: IACC Strategic Plan: Budget Recommendations
12:15 Lunch
12:45 Continuation – Review and Decisions: IACC Strategic Plan: Budget Recommendations
1:15 Review and Decisions: IACC Strategic Plan: Finalizing the Plan
2:00 Break
2:10 Open Session for Public Comment
2:30 Closing Comments and Adjournment

What are the main parts of the agenda? “Review and Desicisons: IACC Strategic Plan: Budget Recommendations” and “Review and Decisions: IACC Strategic Plan: Finalizing the Plan”

Pretty broad agenda item there. Definitely broad enough to cover revisiting the vaccine proposals. Not a “surprise tactic”, not something outside the agenda. Just an action that probably saved the Strategic Plan from being voted down.

TACA is stating that the IACC “rescinds vaccine research initiatives”. Makes it sound like there was a hard commitment to the research initiatives. There wasn’t: the Strategic Plan wasn’t finalized. They also play the “it wasn’t on the agenda” card, like Mr. Wright.

SafeMinds is stating that the action by the IACC defies “wishes of its own scientists”. No kidding, they say that. They say that it also defies the wishes of “Congress”. As Kev has already pointed out, where does the Combating Autism Act state that vaccines should be researched? (hint, it doesn’t). I guess a couple of people speaking in a Colloquy are all of Congress? Because, that’s the only place where this vaccine language is included related to the CAA–the Colloquy–a couple of short speeches given after the Act was voted upon. There were also arguments made before the CAA was voted on about vaccines, including a lot of lobbying by these same autism organizations that are now crying “foul!”

That tells this reader one very important fact: Congress specifically did not include vaccine language in the Combating Autism Act. Seriously, we likely wouldn’t have a CAA if the vaccine language was included. They wouldn’t have had the votes to get it passed. But, hey, that doesn’t make a good press release, does it?

SafeMinds has gone so far as to pull its support for the Strategic Plan. If SafeMinds’ very own Lyn Redwood would like to follow the example set by Alison Tepper Singer and resign (in this case, from the IACC), I’ve got a few really good suggestions for who could fill the seat.

But pull it all together: Autism Speaks, TACA, NAA…all these press releases are damage control. OK, that and they are jockeying for position to complain to the new U.S. administration about how they have been “marginalized”. But, are they being truthful? Are they, as supposed representatives of the “Autism Community”, using their position wisely?

Let’s face facts: the Strategic Plan was going to be voted down. The majority of the members didn’t want the vaccine language included. The options were simple: revisit the sections on vaccines now and get the Plan passed or have the Plan go down in flames now and rewrite the sections on vaccines later.

Either way, the vaccine language was going to be out.

Doesn’t make a good press release, though, does it? “We were going to lose anyway, but we want to pretend like they acted improperly”. Somehow I don’t see Generation Rescue, TACA, SafeMinds, or the NAA issuing such a simple, truthful statement.

Did the IACC act in bad faith?

17 Jan

A slew of Press Releases from Safe Minds and the NAA appeared today decrying the IACC’s re-vote on two pieces of autism/vaccine research. SafeMinds say:

In a highly unusual departure from procedure, government representatives to the Federal Interagency Autism Advisory Committee (IACC) voted this week against conducting studies on vaccine-autism research despite approval of the same studies at their prior meeting. The research was supported by numerous autism organizations and requested by IACC’s scientific work groups and Congress

NAA said:

In an unprecedented move on Wednesday, the Interagency Autism Coordinating Committee (IACC) removed previously approved vaccine safety research from the Strategic Plan for Autism Research objectives…. The committee’s action is in direct opposition to the majority of its public members who support vaccine research, and to the Congressional directive of the Combating Autism Act of 2006 (CAA) which specifically called for research into “potential links between vaccines, vaccine components, and autism spectrum disorder.”

So, there’s a number of issues that need addressing. Lets take them in the easiest to address first.

1) The allegation that the re-vote is ‘highly unusual’ or a ‘departure from procedure’ or ‘unprecedented’.

Well, it may well be unprecedented. Thats because this is only the second time that vote was taken on this issue. The first time they voted one way, this time they voted another. If this was the 300th vote then NAA might have a point. As it is, they don’t. They’re using these as Scare Words to make the situation sound alarming.

I’ve talked to a number of people who attended the IACC meetings both in person and via the phone. The claim that the re-vote was a ‘highly unusual departure from procedure’ is rubbish. Why? *Because there is no procedure* . One person I spoke with said:

[There is]…no requirements other than to vote on approving or not approving the plan. There is not even a requirement to vote on individual initiatives!

Another person said:

[T]here are some rules–e.g they can’t hold a meeting later than the agenda says. In December, Lyn [Redwood] was calling for people to work into the night, but Insel canned it saying the rules are very clear on that.

But in the matters of voting, re-voting etc everyone was in total agreement. There is no procedure. This puts an instant black mark against the NAA and Safe Minds c;aims and reveals it as an attempt to hype up the situation by using Scare Words.

2) The claim that the CAA specifies vaccine specific language

The NAA say in their press release that:

The committee’s action is in direct opposition to…the Congressional directive of the Combating Autism Act of 2006 (CAA) which specifically called for research into “potential links between vaccines, vaccine components, and autism spectrum disorder.”

This is quite simply not true. Nowhere in the CAA is that sentence used. In fact, nowhere in the CAA do the words ‘vaccine’, ‘vaccination’, ‘immunize’, ‘immunization’, ‘inoculate’, inoculation’, ‘thimerosal’, ‘mmr’ etc appear. Don’t take my word for it. Download the Act and search for yourself. I guess somehow, the NAA made a terribly unfortunate accident and confused the CAA itself with this Senate discussion _about_ the act. A discussion which has no bearing whatsoever on the legal _contents of the Act itself_ .

3) The insinuation that because _they_ voted for vaccine specific research, that they speak for the majority of the autism community

The NAA’s press release quotes a Ms. McIlwain as saying:

It’s no wonder parents around the country are questioning vaccines when government agencies refuse to investigate legitimate vaccine safety concerns

Safe Minds Lyn Redwood said:

“Advocacy groups and legislators have been marginalized in this process.”

As we’ve seen, legislators have not been marginalised. Certain advocacy groups may well have been. Boo-hoo. Its about time we asked ourselves the question: do these co-called advocacy groups actually accurately represent individual opinion?

In the Summer of 2008, the NIMH asked for public comments about the IACC’s Strategic Plan. This was following the NIMH’s Director Tom Insel statement to Lyn Redwood of SafeMinds during the Nov 21st 2008 IACC meeting:

We’ve received public comments on both sides and comments that make it clear that vaccines have no place in this report.

If one visits the public comments page (see link above) and does a search for the word ‘vaccine’, this is what you get:

Out of 148 total responses, 52 (35%) specifically mention vaccines, asking for research. 18 (12%) specifically mention vaccines, asking for the IACC in various ways to discount the vaccine idea. This leaves 78 (53%) who are so uninterested in the vaccine idea they don’t even mention it.

Or, to put it another way, 65% of responders did not ask for vaccine research.

I think this is pretty clear. When 65% of people who are interested enough in autism to respond to a request for public comments don’t ask for vaccine research then the 35% who do cannot claim to be in the majority, or to hold the leading opinion on the matter.

So lets recap. The re-vote was not unprecedented. It did not go against procedure. The CAA does not mention vaccines anywhere in the entirety of the bill. The majority of people who are interested in autism aren’t interested in vaccine research.

US Senator discusses seclusion and restraint

16 Jan

I hate to lift an entire blog post, but this one is very short. It’s worth checking the link as there is a video as well.

Dodd Discusses New Report on Use of Seclusion and Restraint in Schools

Senator Chris Dodd (D-CT), a senior member of the Senate Committee on Health, Education, Labor and Pensions and the Chairman of its Subcommittee on Children and Families, joined members of the National Disability Rights Network (NDRN) to announce a new national report on the inappropriate use of seclusion and restraint on students in American schools. Dodd, a longtime supporter of measures to limit the practices of seclusion and restraint, was joined by the NDRNs Executive Director Curt Decker, members of NDRN, and three Connecticut residents whose loved ones were physically restrained or placed in seclusion while attending school

IACC Plan has no vaccines, Alison Singer resigns from Autism Speaks

16 Jan

There was just no way I could listen in to the last IACC meeting. I have been keeping up with all the meetings, but yesterday it was not to be.

I knew it was going to be big, but it was way big. David Kirby tipped the hand when he blogged about how the Strategic Plan was going to include vaccine related research. Strange move–why blog about it before it was set in stone? Why not blog about it right after the December meeting when the language was discussed? A suspicious person would think that Mr. Kirby got wind that the vaccine language was in danger.

And, so it was. Here is a press release:

ALISON SINGER ANNOUNCES HER RESIGNATION AS EXECUTIVE VICE PRESIDENT OF AUTISM SPEAKS

Disagreement on Vaccine Research Prompts Departure

NEW YORK, NY (January 15, 2009) – Alison Tepper Singer, executive vice
president of communications and awareness for Autism Speaks, today
announced that she has resigned from her position with the advocacy
organization, effective next month.

“It has been an honor and a pleasure to help to build this
organization into the preeminent autism advocacy group — the group
that has, in fact, elevated the word “autism” to the global
vocabulary,” said Singer. “I am grateful to Autism Speaks founders Bob
and Suzanne Wright for their leadership, insight, commitment and for
the tremendous support and love they have shown to my family and me.”

“However, for some time I have had concerns about Autism Speaks’
policy on vaccine research. Dozens of credible scientific studies have
exonerated vaccines as a cause of autism. I believe we must devote
limited funding to more promising areas of autism research.”

Singer resigned prior to the January 14th Interagency Autism
Coordinating Committee (IACC) meeting, at which the discussion of
vaccine research was to be continued from the December meeting, at the
request of one of the public members. Knowing she might cast a vote
with which Autism Speaks might disagree, she resigned from Autism
Speaks prior to the meeting. Singer serves as a public member of the
IACC and will continue to serve until 2011. She was appointed to the
IACC by outgoing HHS Secretary Michael Leavitt in 2007.

The IACC, created via the Combating Autism Act of 2006, is responsible
for coordinating all efforts within the Department of Health and Human
Services (HHS) concerning autism spectrum disorder, including drafting
a Strategic Plan for autism research with budgetary requirements. At
the January meeing, the IACC voted to seek input on two proposed
studies of vaccines and autism from the National Vaccine Advisory
Committee Safey Working Group (NVAC), an HHS group specifically
charged with undertaking and coordinating scientific review of the
federal vaccine safety system, prior to including the proposals as
specific objectives in the strategic plan. Singer voted in favor of
this motion.

Singer was the first professional hired by Autism Speaks when it
launched in 2005. She served as interim CEO for three months, then as
senior vice president and later as executive vice president. She also
served as a staff member of the board of directors until her
resignation. Singer has been responsible for directing the
organization’s award-winning awareness and strategic communications
programs, including its work with the Ad Council which was awarded
aprestigious “Effie” award in 2008 in recognition of the 43 percent
increase in overall autism awareness directly attributable to the
campaign. She also serves on the Executive Committee of the YaleChild
Study Center and on the board of directors of Autism Spectrum News, as
well as on numerous state and local autism advocacy committees. She
has appeared on Oprah, The Apprentice, NBC Nightly News, Good Morning
America, CBS Early Show and numerous other news programs discussing
autism issues.

“My work with Autism Speaks and within the advocacy community has been
exceptionally rewarding, and I will continue to advocate on behalf of
my daughter, my brother and the millions of others affected by autism
spectrum disorder,” said Singer.

Autism Speaks has its own press release.

NEW YORK, NY (January 15, 2009) – Autism Speaks today decried a vote by the Interagency Autism Coordinating Committee (IACC) to reverse a previously voted-on decision to approve objectives relating to vaccine safety research as part of its deliberations for the Strategic Plan for Autism Research. The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December — would be revisited. As a result, Autism Speaks is withdrawing its support for the Strategic Plan.

IACC met yesterday at the NIMH in Bethesda, MD, to finalize the Strategic Plan. As mandated by the Combating Autism Act of 2006, IACC must develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder (ASD) research, including proposed budgetary requirements.

“We are angered and disappointed by this last-minute deviation in the painstaking process of approving the Strategic Plan. Members of the autism community have worked tirelessly during the last two years to develop a plan that would set the stage for significant progress and discoveries for autism research over the next five years,” said Bob Wright, co-founder of Autism Speaks. “In a matter of minutes, the Federal Members of the IACC destroyed much of the good will that had been established during the course of this process. Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

Five of the six public members voted against this revision. Autism Speaks Executive Vice President Alison Tepper Singer was the sole public member to cast a vote in support. The evening prior to the vote, Singer submitted her resignation to Autism Speaks – which was accepted – based on her intention to vote on certain Strategic Plan vaccine safety matters in a way that diverged from Autism Speaks’ position on this issue. Thus, in casting votes on January 14, she was acting as an individual public member of IACC and no longer as a representative of Autism Speaks.

“We are hopeful that the new administration will fulfill the intent of the Combating Autism Act and truly value and respect the input of the autism community,” added Wright. “It is imperative that we move forward and ensure that there is a Strategic Plan that meets the needs of the autism community. Autism Speaks is committed to being part of that process.”

Wow.

I have to point out something rather odd in the Autism Speaks version. Note that they claim

“The decision to debate removing these objectives was not posted on the meeting’s agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December — would be revisited”

This is given as the reason why they are withdrawing their support for the Plan, by the way.

Why point this out? How did Alison Singer know the night before to resign if there was no forewarning? How did Autism Speaks accept the resignation if there was no forewarning? And, in the speculation realm, why did David Kirby blog about the vaccine provisions if there was no idea that those provisions were in danger? As I noted above, the natural time to blog it was right after the December IACC meeting, but he delayed for some time. Come on, Autism Speaks. Admit it, you are pulling support because you wanted vaccine language, not because this was a surprise.

It took guts to do what Ms. Singer did. I know I can expect comments pointing back to the Autism Speaks video that Ms. Singer participated in, but I’d like to stress: it took a lot of guts to do what she did.

Oh yeah, Autism Speaks: You don’t speak for the “autism community” any more than Generation Rescue does. You certainly don’t speak for me on this issue.

Twitter Users
You can tweet your feelings about this issue at a dedicated debate site.

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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Paul Offit in the New York Times

13 Jan

Paul Offit is in the NYT today talking about his book:

A new book defending vaccines, written by a doctor infuriated at the claim that they cause autism, is galvanizing a backlash against the antivaccine movement in the United States.

which is true. For the first time in the nearly six years I’ve been blogging about autism and vaccines, things are happening beyond the stale, jargon filled denouncements appended to the end of news pieces about autism and vaccines. Doctors in the US and UK are wising up to the very real health dangers – and dangers posed to autism research – posed by the antivaccine/autism lobby. I’ve seen health experts on TV over here, read many interviews with actual doctors and scientists in both countries and am aware of plans to carry the message much, much further and harder than ever before. Its about time.

Offit again mentions the threats he’s received and Dr. Gregory A. Poland mentions threats his kids, something that Offit has also received, as have I and several other autism parents who don’t believe vaccines cause autism. Some scoff at that according to the NYT article. I would suggest that that displays a level of arrogance and head-burying that is unhealthy.

However, I think some of the scientists involved are naive or simply don’t understand the level of blind fanaticism they are dealing with:

If the surgeon general or the secretary of health or the head of the C.D.C. would come out and make a really strong statement on this, I think the whole thing would go away,” said Dr. Peter J. Hotez, president of the Sabin Vaccine Institute, who has a severely autistic daughter…

With respect to Dr Hotez, thats living in a fantasy world. What would happen is that certain factions would simply do what they try to do to Dr Offit, Dr Poland, Dr Shattuck, him (if he knew it), me, Kathleen, Kristina, Amanda, Orac, Joseph, Do’C (the list goes ever on) and now Josh and Ben from Change.org – they would suggest that the Surgeon General had become a pharma shill. They would wheel out the same tired old statements from ex-heads of NIH etc, people who have no relevance and no ideas and the whole thing would just go around and around.

To be 100% honest, the best thing to do with these people is buy them an island somewhere, transport them to it and let them live out their lives totally organically and naturally. Two birds, one stone.

But seriously, you will never, ever get through to these people. They cannot be reasoned with. To quote Lord Byron:

Those who will not reason are bigots, those who cannot are fools, and those who dare not are slaves.

Leading members of Generation Rescue are quoted in the piece:

We have hundreds of fully recovered children. I’m very frustrated that Dr. Offit, who’s never treated an autistic child, is spending his time trying to refute the reality of biomedical recovery.

He…condemned threats generally, saying he had received some himself. “No one should ever do that to another human being,” he said.

This is a constant source of puzzlement to me as I keep hearing about these ‘hundreds of full recovered children’ (didn’t it used to be thousands?) and yet a search of PubMed for these case studies show nothing at all.

So where are they? Much like David Kirby with his claim HHS have said vaccines caused Hannah Poling’s autism when they have not, this is yet another soundbite with no substance at all to back it up. How long can one keep making such wild claims without a shred of evidence to support them? How long before one’s own conscience starts to trouble you?

Many doctors now argue that reporters should treat the antivaccine lobby with the same indifference they do Holocaust deniers, AIDS deniers and those claiming to have proof that NASA faked the Moon landings.

I agree. But whilst we live in a society that thinks Jenny McCarthy is capable of offering medical advice and the media love celebs more than people it ain’t going to happen. Medical science needs to carry on fighting and fighting harder.

Why is David Kirby grasping at straws?

9 Jan

Once more for the record, I like David. I tried very hard to get to see him in London last time he was over and we’d arranged to meet up for a drink but due to my family situation it wasn’t to be. However, I cannot let that stop me from recalling that we have very differing views on a wide range of things to do with autism and vaccines.

I have noticed of late a tendency for David’s HuffPo blog posts to be more than usually full of ‘if’ ‘maybe’ ‘might’ etc. However his skill as a writer buries these ambiguities and makes them appear certainties. I’m not even sure its a concious thing for David. His need to write well sometimes (I think) obscures a clinical need for precision in such delicate areas as he and I write in.

With that in mind, I recalled a post of his from November 2008 entitled ‘Tom Daschle: Friend to Many Autism Families’ in which he describes Mr Daschle thusly:

By nominating Tom Daschle to head up the Department, President Elect Obama has selected a man who has demonstrated an unflinching willingness to question vaccine safety, and to fight for the rights of those people who believe they have been, or may be, seriously injured by certain vaccinations.

I think David might’ve been trying to insinuate that Tom Daschle’s nomination was good for the autism/antivaccine community. Certainly however, as with the autism/antivaccine’s belief that RFK Jr would be appointed by Obama, this nomination might not be quite what that community is expecting. As blogged by Orac today, Daschle’s true feelings on vaccinations were spelt out by the man himself:

Immunization is probably as — as sound an investment as we can make in good health. I can’t imagine that we could do any better than ensure that every — every child is immunized, and that we understand the importance of — of broad-based immunization and the tremendous good health that can come from it.

Following that, David made a fairly innocuous presentation from a US Army scientist look much more sinister than it actually was. He claimed that the army listed autism as a possible ‘health effect’ of mercury/thiomersal. It turned out that that was not actually the case.

Dr. Centeno’s presentation, entititled ‘Mercury Poisoning: A Clinical and Toxicological Perspective,’ did mention Thimerosal. However, its inclusion was specifically intended to point out that although there has been some speculation about a potential association between Thimerosal and Autism, currently there is no data or science to support such a claim. Neither the AFIP nor Dr. Centeno have been involved in or conducted research on Autism.

After that was the recent debacle when David mixed up Change.org and Change.gov – the latter being a website of Obama. The former a privately owned enterprise for at least the last 2 years. David thought (and committed to a blog post) that Obama had hired pro-neurodiversity bloggers and he imagined a conversation Obama might have with an autism parent:

It is hard to imagine the President one day saying…“I do not think we should devote resources to finding out what happened to your [autistic child]. I do not believe there is anything we can do to help him, and it is not desirable to even try.

This post made me sad and angry. I thought better of David than that. To say that any of us who do not believe vaccines cause autism do not think it is desirable to help our autistic children is massively insulting. I hope someday David can maybe spend a bit of time with parents who don’t think vaccines caused their child’s autism and see for himself how we help our kids. And maybe an apology might be forthcoming also.

David’s latest faux pas is regarding the latest MIND institute study. In a post entitled ‘UC Davis Study: Autism is Environmental (Can We Move On Now?)’ David says:

Autism is predominantly an environmentally acquired disease, the study seems to conclude. Its meteoric rise, at least in California, cannot possibly be attributed to that shopworn mantra we still hear everyday, incredibly, from far too many public health officials: It’s due to better diagnosing and counting.

The autism epidemic is real, and it is not caused by genes alone: You cannot have a genetic epidemic. It really is time that we, as a society, accept that cold, hard truth.

Here’s the full conclusion:

Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changes
in diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases. Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

Lets look at that last again:

…the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

And yet David seems to to think its crystal clear. The paper itself also contains some direct and fairly easy-to-check errors. For example:

The inclusion of milder cases has been suggested as an explanation for the increase in autism. Neither Asperger’s
syndrome nor “pervasive developmental disorders not otherwise specified” qualify under the category of autism in the DDS system.

Here is what DDS passed on to me in Summer of 2007. I promised not to attribute the quote to an individual so I won’t, but you can email DDS yourselves and ask them.

The current CDER was written in 1978 and updated in 1986, which is why the language is so out of date ( e.g., Residual Autism). California has clinicians in the field who are, of course, using modern criteria in their assessments but then they have to go backwards and try to fit those kids into the 1986 CDER. So you are going to have Aspergers kids, PDD-NOS kids in both categories 1 and 2. Categories 1 and 2 are called ‘Autism.’ But because there are so many clinicians, using lots of different techniques for evaluation, there is a lot of inconsistency and enrollment figures should not be misused as epidemiological data.

Hertz-Picciotto might also be interested in a quote from Rita Eagle PhD of the California Dept. of Developmental Services (DDS) to Journal of Autism and Developmental Disorders, Vol. 34, No. 1, February 2004:

To many clinicians, it appears that more and more children who, in the past, would never have been referred to the regional centers for example, bright but anxious and slightly socially inept kids with average or better IQs and children who, in the past, had been or would have been diagnosed as ADHD, OCD, ODD, anxiety disorder, learning disabilities, psychotic, and so forth are now being diagnosed wit high-functioning autism and/or Asperger syndrome and referred to the regional centers for services.

Truth is that a lot of Hertz-Picciotto 2009 is simply wrong. For an extensive overview of why, please read Joseph’s technical takedown from which I’ll quote his conclusion:

H-P et al. is a surprisingly poor paper. It does not produce any new data in order to support its two main results. It makes an apples-to-oranges comparison between a Finnish epidemiological study and California DDS ascertainment over time. It tells us the obvious about “milder” cases. In the end, I don’t think this is an improvement over the 2002 MIND Institute report to the California Legislature. In fact, it could very well be worse.

The way H-P et al. have gone about trying to show there’s a real rise in autism incidence over time is not a very good way to go about doing things, in my view. There are other ways. For example, I’ve suggested trying to replicate Lotter (1967) in detail. This would not be as easily challenged.

David closes his latest error prone piece with:

But the sooner our best minds in science and medicine come to grips with the fact that these poor, hapless kids have been exposed to the wrong environmental toxins and/or infectious agents at the wrong time, the sooner we can find out how to best treat what really ails them.

This is a prime example of bad science leading the media. David has reported on a paper that has made fairly bad errors and taken them at their word. Sadly, this sort of thing will only continue as long as institutions like MIND (controlled by a man who is dedicated to proving vaccines cause autism) churn out error strewn papers.

In totally unrelated other news…

7 Jan

This post has nothing whatsoever to do with autism – its a purely indulgent sidetrack 🙂

Tomorrow marks a momentous day in my life. I am getting what is known as ‘the snip’.

Nervous? Oh yes. You bet I am. My delightful work colleagues and friends who have known about this since before Xmas have been texting me jokes about vasectomies, emailing my pictures that I shan’t describe, dropping hilarious jokes in my Facebook inbox, Direct Messaging me equally hilarious comments on Twitter. Oh, its been fun I can tell you.

As a way of making me feel slightly less nervous about the whole thing, I’ve decided I’m going to Live Tweet the whole operation. This means you – yes you – can keep up with an um, blow by blow account of every gory detail live and as it happens. From my pain-wracked fingers to your eyes as it were.

So, how do you get onboard this train?

You can join Twitter and Follow me. Refresh my home page every so often.

Or a better way is to join up, follow me as above and then go here which is a Twitter Search for the phrase #kevsnip which I will include in all my posts from the operation. You can also use this phrase if you want to Tweet as well.

Kick off is around 3pm GMT. See you there!

Autism community show their compassion

6 Jan

I’ve refrained from blogging about the death of Jett Travolta because I don’t really know what to say about it directly. I’ve mentioned the lad before in passing and his dad in terms of the suggestion that Jett was autistic and his mum and dad were refusing to recognise his autism because their scientologist beliefs wouldn’t let them. I definitely have opinions about the life and death of Jett Travolta but, hey guess what? Maybe right now isn’t the time for me to air them?

In fact, whilst I think about it, maybe this isn’t the time for any autism group to air them when those opinions are simply carefully veiled hit-pieces designed solely to try and draw attention to ones own ideas about autism causation. Distasteful isn’t the word when you read something like the below from Dan Olmsted:

We don’t know why Jett Travolta died, but we do know that our environment is making more and more of our kids sick while the medical community and public health officials deliberately avoid investigating “the equivalent of a metallic chemical,” whether it’s found in commercial products, vaccines or carpets with spilled mercury. Our kids are paying the price.

which appeared at the end of a piece he wrote on AoA trying to link Kawasaki disease (which the Travolta’s say Jett had), acrodynia (a form of mercury poisoning) and autism. The man has absolutely no shame or decency.

But even Olmsted’s lack of social skill pales into insignificance when compared to the group Autism United who apparently tried the most appallingly bad taste PR stunt to promulgate their message.

This is a difficult time for John and Kelly, and our prayers are with them,” said Ain. “But this could be an opportunity for them to use their son’s death and their celebrity to help thousands of parents, who are caring for sick youngsters.

Yeah, because if one of my kids had literally _just_ died the first thing I’d feel like doing is jumping in front of a TV camera and ‘using my childs death’.

Jesus Christ. Gave the family a break yeah? Whatever his beliefs were and whatever my opinions about them are, I hope I can see the truth about how John Travolta felt about his son.

If there’s anyone out there who sees that and can’t see that the man loved his boy then there’s something wrong with you. If there’s anyone out there who feels that this is a good time to start *using* Jett Travolta’s death to further their own crackpot ideas, there’s something wrong with you.

Again, with the adult autistics

4 Jan

One of the bigger conceptual issues in the divided autism community is adult autism. To some (me included) the idea of autism being a childhood issue is misguided and just plain wrong. To others, autism _is_ a childhood condition.

Part of their misunderstanding is that adults with autism are just not given enough attention and thus, it is hard to ‘see’ their existence, except online where it is clear to those who are prepared to be realistic that there are plenty of adult autistics of various functional abilities.

My stance is this: there is no decent science that has looked to see in what number adult autistics exist as compared to child autistics. However, it is obvious there are many. The NAS statistics give these figures (with caution) for the UK:

The estimated number of children under 18 with an autism spectrum disorder (ASD) is 133,500. There could be over 500,000 adults who have an ASD. So just over 74% of people with an ASD in the UK could be adults.

However, this is not certain. What is certain is the absolutely terrible state of knowledge regarding adults with autism in just about every country you care to mention:

A survey performed by the National Autistic Society (NAS) found that Portsmouth City Council and Hampshire County Council do not know how many adults in their area have the learning disability.

The story is repeated up and down the UK.

A 2004 audit on ASD in Scotland tried to present on overall report on the ‘state of ASD knowledge’ in Scotland. Most striking to me as I read the report was the comments that each local authority/NHS partnership had regarding an answer to the following question:

“Research tells us that prevalence rates of autistic spectrum disorder represent an underestimate. To what extent do you consider the numbers above to be an accurate reflection of all those who live in your area?”

Argyll & Bute Council
It is believed that the figures represent a significant under-representation of those with ASD in Argyll and Bute. This was thought to be due to a historical under-diagnosis and the absence of clearly defined referral pathways and multi-agency assessment processes for adults.

East Renfrewshire Council, NHS A&C and Greater Glasgow NHS
…as a result of changing patterns of diagnosis over recent years there are likely to be substantial numbers of adults with ASD who are not known to services and are not diagnosed as having ASDs.

AYRSHIRE AND ARRAN
It is apparent that information collection and collation for adults is almost non existent.

DUMFRIES AND GALLOWAY
There is little doubt that this number is far short of the actual number of adults in Dumfries & Galloway with ASD.

GRAMPIAN
There is low diagnosis for longstanding clients, whom workers are aware have autism as well as a learning disability.

HIGHLAND
It is believed that these figures comprise a significant underestimate due to the lack of a diagnostic process particularly for adults. It is believed that the figures for younger children are accurate due to the development of diagnostic tools for children are accurate due to the development of diagnostic tools for children and the establishment of multi-disciplinary partnerships which include education.

LANARKSHIRE
The estimated numbers provided for the pre-school and primary school ages are thought to be a reasonably accurate reflection of the true picture. However the estimated number of secondary school children is less accurate and the estimated number of adults with ASD is likely to be a considerable underestimate of the true prevalence.

ORKNEY
Figures for children are an accurate representation of needs. One or two children may yet be diagnosed. Figures for adults are under estimated as diagnosis has not been made and access to specialists is variable.

Perth & Kinross Council
Figures for adults reflect the national findings that the numbers known to services/diagnosed represent a significant underestimate of those individuals likely to be affected. For example day centre managers locally consider a number of people to be on the spectrum who have had no formal diagnosis.

This meant that 45% of the areas covered in Scotland clearly felt that there was a severe under diagnosis of adults in Scotland. It was also acknowledged that there were people on their books who were clearly autistic but had no diagnosis.

It seems to me that the best answer to the question of how many adult autistics are there is: no firm numbers but obviously lots.

Or, to put it another way – my child isn’t getting any younger…how about yours? Looking forward to their adulthood with a culture that doesn’t recognise them?

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