Archive | May, 2009

New autism prevalence 1.5% in UK

31 May

A new study published (officially) tomorrow discusses ‘Prevalence of autism-spectrum conditions: UK school-based population study’.

Its an interesting study for quite a few reasons. Firstly, it offers a new autism prevalence of 1.5% (1 in 66). That’s the message that the press will no doubt focus on (and, as Kristina blogs, already have). And I’ve absolutely no doubt that our friends from JABS, Age of Autism and various other anti-vaccine fringe groups will be painting this as part of their ‘evidence’ that we’re in the throes of a massive autism ‘epidemic’.

However, the paper itself is very nuanced and is clear in its messages. However, to be absolutely sure I was correct in the conclusions I drew I had an email conversation with Professor Baron-Cohen before writing this entry.

Point 1: This study confirms the baseline rate of 1% as asserted by the Baird et al paper

Baird et al (2006) asserted that their findings would offer a baseline rate of autism prevalence, that prevalence being 1%. This figure was ascertained by looking at a SEN population of a South Thames cohort. Baron-Cohen et al (2009) confirmed that figure:

These authors took the decision to screen only the ‘at-risk’ population and assert that their estimate should be regarded as the minimum figure. Our results from screening the entire school-aged population support this assertion…

In other words Baron-Cohen et al also looked at the ‘at risk’ population and also found a prevalence of 1%.

Point 2: Baron-Cohen et al identify a further 0.5% to make a total prevalence of 1.5%

What is different about the Baron-Cohen paper is that as well as looking at the ‘at risk’ group they _also_ looked at mainstream schools. Using the CAST screening tool, this study identified a previously unknown prevalence of 0.5% within this mainstream environment.

Our results from screening the entire school-aged population…highlights the reality that there are children with autism- spectrum conditions, notably children with high-functioning autism, who remain undetected in primary schools. These children may use strategies to mask their social and communication difficulties such as going to the computer room at playtime. They may be quiet and cooperative at school and not difficult to manage and therefore teachers may not be aware that they have difficulties. Primary schools in the UK are typically small and foster a supportive and nurturing environment. It may not be until these children move to secondary school that their true differences are revealed.

Often I have heard people asking how it is possible that people with autism could possibly be missed. The Baron-Cohen et al paper gives a graphic answer to that question.

Point 3: Caution should be applied in assuming that results ascertained in Cambridgeshire could be applied across the rest of the country

The area is very affluent within the UK and has excellent autism resources for autistic children. It is a given that many families have moved into the area to try and exploit those services. This would have a positive effect on prevalence that is not consistent with the majority of the UK.

Our study does not report on migration of families but given the level of services for and awareness of autism-spectrum conditions in Cambridgeshire, this remains a distinct possibility. Caution should therefore be employed in assuming that the figures reported here can be applied nationwide.

Professor Baron-Cohen and I had the following exchange about the autism ‘epidemic’:

KL: What would you say to someone who says that your paper is strong evidence of an ‘autism epidemic’ (because you know they will)?

SBC: I think the term ‘epidemic’ of most value in relation to contagious diseases, which autism is not.

KL: Can I rephrase my question? Would you say your findings support the idea that there has been a true rise in prevalence? As oppose to the seven items you say have caused a seeming rise in autism earlier in your paper?

SBC: There has been a real rise in prevalence but what is at issue are the causes of this rise. In the paper we summarize the quite ordinary factors that might have driven the rise, such as better recognition, growth of services, and widening diagnostic criteria.

So next time someone who likes to bandy about the phrase ‘epidemic denier’ like he knows what he’s talking about when he claims that the ‘epidemic deniers’ say that autism is just better recognised these days, tell him there’s a lot more than just one reason:

Prevalence estimates for autism-spectrum conditions have shown a steady increase over the past four decades. In 1978, the consensus estimate for classic autism was 4 in 10 000; today autism-spectrum conditions (including classic autism) affect approximately 1% of the population. This massive increase is likely to reflect seven factors: improved recognition and detection; changes in study methodology; an increase in available diagnostic services; increased awareness among professionals and parents; growing acceptance that autism can coexist with a range of other conditions; and a widening of the diagnostic criteria.

Autism Minnesota Somali community see through anti-vaccine brigade

29 May

In November last year, David Kirby wrote a Huffington Post entry about the Minnesota Somali autism situation saying:

In fact, one of the most obvious “environmental” differences between Minnesota and Somalia is mass vaccination…

And of course, the Age of Autism site, made many proclamations about the Somali community and vaccines:

Somali parents, I offer this advice as the father of a son with autism. Like many of you, I watched my normal son descend into autism after receiving his vaccines. I genuinely believe too many vaccines given too soon in our children’s lives is the primary trigger for the autism epidemic

However it seems that maybe the Minnesotan Somali autism population have done their own reading and come to their own conclusions.

The Somali American Autism Foundation is a new-ish Foundation. The domain name was created in Feb 2009 for example. Pretty much in the middle of the period that the Age of Autism crew were waxing lyrical about standing shoulder to shoulder with their Somalian friends in the battle against vaccines.

One of the founders of the SAAF, Idil Abdull, has this to say:

When my son Abdullahi was first diagnosed with autism at age three, I felt angry, sad and confused because I have never heard of the word Autism before. I had no idea what to do next and how to help my son. A mother’s job is to help her child with whatever life throws at them, but when the doctor told me there is no known cause and cure for autism, I felt helpless and hopeless.

I remember crying for what seemed forever. After I realized to be thankful that god blessed me with a beautiful son, I saw the hope in him and the help he needed from his mother. I rolled up my sleeves and went to work by reading every autism book I could find and going online for any help to give my son the hope he and countless others need and deserve. I would not change a thing about my son Abdullahi. He is a happy and loving child and I thank god everyday for him. There is HELP and There is HOPE not just for my son but for all of our children.

Now thats a pretty fantastic, positive and…yep, neurodiverse, type of message don’t you think?

But there’s more.

The SAAF website carries a detailed explanation of what a vaccine is and how they were first started. It takes away a lot of the negative mystery and states:

There is a strong minority of people who believe that the increasing rates of autism and learning disabilities in the U.S. are related to its mandatory immunization program. There is still no credible evidence of a correlation between autism and vaccinations. This position is supported by the World Health Organization, the CDC, The AMA, and the American Academy of Pediatrics.

They then recommend that a parent talk to their physician. What simple, credible and good advice.

I’d like to welcome The SAAF to the growing community of autism organisations that are clearly fed up with a constant preoccupation with a disproven hypothesis. Maybe it would be a good idea for SAAF and the newly created Autism Science Foundation to talk together.

Circling the Wagons

29 May

The alternative medicine community is certainly loyal to their own. This seems especially true in the world of Autism where no idea is ever abandoned, no practitioner ever criticized.

After the Chicago Tribune published articles on the Geiers (and here), as well as Dr. Mayer Eisenstein, it was a forgone conclusion that the community would close ranks.

These articles were published right before the AutismOne conference–which chose to honor Andrew Wakefield after news was released that he may have altered his data. See what I mean? No quicker way to be a hero than to have really the skeletons in your closet made public.

The most basic response was from Kim Stagliano, who let this tweet on Twitter:

From Kim: Chicago Trib is close to dead. Suddenly launches full frontal attack on autism during Autism One. AAP in backyard. They hear us.

Yes, the Tribune is bad and in the pockets of the AAP and the AAP are evil. Please.

Dan Olmsted came out rather quickly with a piece in the Age of Autism blog in defense of the Geiers and Dr. Eisenstein. Later, Anne Dachel did another piece.

Both use a simple contrivance: avoid the real questions raised by the article. Instead, write about “what the Tribune story should have included”. This is especially true of Anne Dachel, who went on and on over pretty much all the media talking points of the vaccines-cause-autism movement.

For example, both Mr. Olmsted and Ms. Dachel thought the Tribune should have discussed Dr. Bernadine Healy. The connection to the story? None. But, Dr. Healy is vitally important to the story Olmsted and Dachel want to tell. See what I mean?

Dan Olmsted’s method sidestepping of the real questions was rather poorly done. In his piece, he writes:

The article lumps Lupron — about which I know nothing, and have no opinion — in with alternative approaches like diet, about which I do know something, and do have an opinion.

Frankly, I found this a ridiculous statement. Dan Olmsted was attending the AutismOne conference–a conference which for years has hosted talks by Mark Geier on Lupron and which Dan Olmsted has attended for years. I guess he missed the Geier talks?

It isn’t as though Mr. Olmsted isn’t able to form an opinion on scant data. Mr. Olmsted has shown a particular interest in Kathleen Seidel–to the point where Mr. Olmsted “diagnosed” her kid with mercury poisoning based on a paragraph in the book Autism’s False Prophets. From only a snippet (wrongly interpreted by Mr. Olmsted) about one of Ms. Seidel’s previous jobs, Mr. Olmsted claimed that she had high levels of mercury, and further stated:

Laugh me off if you want, but I have spent a lot of time looking for plausible links between parents’ occupations and autism in their children, and I know them when I see them.

So, he’s willing to go out on a limb based on a few words in a book, but, say, the page after page that Ms. Seidel wrote about the Geiers and Lupron (e.g. here, here and here) left no impression?

Sorry, Mr. Olmsted. I know ’em when I see ’em too. I see you dodging really tough questions about the Geiers in an effort to protect one of the big names in autism psuedoscience.

To further point out how silly the “about which I know nothing, and have no opinion”, one of the readers of that blog piece pointed out:

Dan, last year AoA published a post from Kent Heckenlively entitled “MERCURY, TESTOSTERONE AND AUTISM – A REALLY BIG IDEA!” In the comments, you said that you had gone to the Geiers’ house and witnessed a child receive a Lupron injection and improve immediately. You “just had to put this on the record,” you said.

I take the fact that Mr. Olmsted has gone from Lupron shill to even this weak distancing himself from Lupron (“I know nothing”) as a good sign. Even Dan Olmsted must be seeing the cracks in the Lupron Logic.

Ms. Dachel does her own “two step” around the question of her real opinion on Lupron.

Let me say that I’m not an expert on any of the medical aspects of this; I’m merely an observer. So here’s what I’m seeing.

Since when does not being an expert on the medical aspects stopped anyone at the Age of Autism blog from making very clear opinionated statements?

But, again, I take the clear signal that she is willing to distance herself from Lupron as a small, but positive sign.

So, let me use their contrivance–let me list what Mr. Olmsted and Ms. Dachel should have written about in their blog pieces. Let me list many of the real questions raised by the articles in the Tribune. As you read this list, it will become obvious why the Olmsted/Dachel tag-team avoided these questions: these are serious questions about people possibly harming children with autism and Dan Olmsted and Anne Dachel don’t have answers to these questions.

At least, they don’t have answers which would satisfy their readership.

Here is the list of questions I had after reading the Tribune articles:

1) Are parents still being sold the idea that Lupron will help remove mercury from their autistic children?

2) Are parents still being told that mercury causes autism? (OK, we all know the answer to that one. The answer is yes. No amount of data will convince Mr. Olmsted.)

3) Are the diagnoses of “precocious puberty” valid? Would a real pediatric endocrinologist agree with the Geier’s assessments? From the Tribune, quoting an actual expert in precocious puberty:

None of the data verify or even suggest that any of these patients have precocious puberty.

4) What is the purpose of all the extra lab tests the Geiers are performing? Are they for the Geiers’ research? If so, why should the parents (or their insurance) foot the bill?

5) Why do the Geiers use 10 times the normal dosage of Lupron?

5) Is Lupron being used as a chemical restraint?

6) Does Lupron even work well enough to warrant its use? Given that Dr. Eisenstein is reported to be close to dropping Lupron, it clearly isn’t a “miracle drug”.

7) what are the side effects of extended use of Lupron. Especially, what are the side effects of wrongly delaying puberty? According to the Tribune story:

Experts in childhood hormones warn that Lupron can disrupt normal development, interfering with natural puberty and potentially putting children’s hearts and bones at risk.

8) Why don’t the Geiers recommend patients to see board certified pediatric endocrinologists?

9) If precocious puberty is so prevalent amongst children with autism, why don’t pediatric endocrinologists see it? According to the Geiers:

Mark Geier responded that these are “opinions by people who don’t know what they are talking about,” saying the pediatric endocrinologists interviewed by the Tribune don’t treat autistic children and have not tried the Lupron treatment.

10) What about older kids the Geiers are treating? Are they being correctly diagnosed? From the Tribune story:

David Geier said his father diagnoses high-testosterone teens not with precocious puberty, but with another very rare condition: testicular hyperfunction.

How does “testicular hyperfunction” explain the older girls the Geiers have treated?

11) The effects of Lupron on sex hormones are temporary. Stop the shots, the hormones return. The loss of the beneficial effects of puberty are permanent. Does the trade off make sense?

And that is just the list of questions based on the article on the Geiers. Then there is the story about Dr. Eisenstein. This too raises a number of tricky questions.

1) Is Dr. Eisenstein a credible resource for information? After reading the article, one has to question that.

2) Would people like Anne Dachel, Kim Stagliano and Dan Olmsted recommend people see a physician whose malpractice insurance may be “phony”?

In court records dating back three decades, the families of dead and brain-damaged children repeatedly alleged that doctors who work for Eisenstein made harmful mistakes — sometimes the same error more than once. His practice also has been dogged by accusations in court records that its offshore malpractice policy was phony.

3) Would Is Dr. Eisenstein’s record of selling “illegal” health insurance troublesome?

He also dabbled in group health plan sales to Illinois families but tangled with state insurance regulators in the mid- to late 1990s. Regulators warned consumers in a newsletter that Eisenstein “continued to illegally market” the Homefirst Health Plan, based in the British Virgin Islands, even after they told him the plan was ineligible. Despite this, he continued selling the plan, records show, and they ordered him to “cease and desist.”

4) Dr. Eisenstein seems to be good at blameshifting. In this case he accuses the parents of making a mistake that appears to be clearly that of his colleague at HomeFirst. Is this the sort of doctor parents of autistic kids should be seeing?

A Homefirst doctor took a sample of blood from Na’eem’s umbilical cord that could have been used to diagnose the problem and could have led to prompt treatment, according to court testimony. But instead of dropping off the sample at the lab, the doctor said under oath, he was tired, went home and put the sample in his refrigerator, where it sat the whole weekend.

In an interview, Eisenstein blamed the parents for not taking the baby to the emergency room for a blood test. Na’eem’s parents testified that no one from Homefirst ever told them to go to the emergency room.

5) Dr. Eisenstein appears to make some rather questionable decisions about insuring his own practice. Also, it appears from this quote that perhaps he has gone without malpractice insurance. Again, is this the sort of doctor parents of autistic children should be using?

After Nathan Howey’s death, Weiss Hospital sued Homefirst, Rosi and Eisenstein for fraud, alleging they misrepresented their Caribbean-based malpractice policy. Eisenstein testified that he was in St. Kitts helping one of his daughters, a veterinary student there, buy a condo when the lawyer who helped arrange the sale told Eisenstein he also sold malpractice insurance.

“I was tickled pink to get insurance,” he said under oath.

A Cook County judge called it an “improperly underwritten insurance plan.” Eisenstein, who says the policy is legitimate, agreed to pay Weiss $50,000 after mediation.

6) Dr. Eisenstein appears to have inflated his credentials:

Eisenstein said under oath that he was a faculty member at the Hinsdale Hospital Family Practice Residency Program from 1992 to 2003. A hospital administrator testified that Eisenstein “never was” a faculty member. In a recent interview, Eisenstein said that while he wasn’t a faculty member there, he did teach students from that program and kept snapshots of them.

(anyone else reminded of Vera Byers, witness for the petitioners in the Omnibus, who claimed to be faculty at UCSF? In reality, she used the library and attended parties there.)

7) Lastly, is this the type of doctor we should be taking our kids to?

Reflecting on the $1.275 million malpractice settlement, he appeared unshaken.

“It’s the cost,” he said, “of doing business.”

I’m sure the parents were glad to hear that their kid’s life was “the cost of doing business”.

There are a lot of questions raised by these stories. Hard questions. Questions Mr. Olmsted, Ms. Dachel and Ms. Stagliano should answer if they want to really serve their readership.

Autism Progresses in Parliament

28 May

A few weeks ago I attended the Northern Regional Forum of the National Autistic Society. The general feeling was that all those working around the private member’s bill on Autism then before Parliament had done a fantastic job. The government was talking to us and, more importantly, listening to us. The Bill of course would never become law but we could expect signficant concessions from the government in exchange for the Bill being dropped.

Instead the government proposed to delete the existing clauses in th eBill and replace them with amendments of its own covering

  • Transition Planning
  • Diagnosis
  • Identification and Assessment
  • Provision of Services
  • Training of Professionals
  • Local Authority/PCT Leadership

These amendments were acceptable to the Bill’s supporters and it will now progress through Parliament with government support. It is thus more closely focused on adult proivision. Provisions relating to children, including diagnosis, data collection and planning services will be enacted via regulations and guidance issued by the government a part of its Children and Young People’s Plan.

There is still a lot of work to be done. The government consultation that I wrote about last month is continuing and it is even more important now for people to respond.

Meanwhile, another private member’s bill from John Bercow on special educational needs that only came 19th out of 20 in a poll of MPs has failed to become law but the government has given assurances that it is making progress on meeting the commitments outlined in the Bill. The NAs was again involved in drafting the Bill and lobbying for its support.

the National Autism Society, which had worked with Bercow on the Bill, said it was satisfied that the Bill had achieved some success.

NAS policy manager Beth Reid said: “This Bill has helped to raise the profile of many important issues facing SEN children. It has put increased focus on making sure the right measures are in place to ensure they are support properly.”

However, Reid said more work was needed to bring down the high number of SEN children [whch contains a disproportionate number of autistic children] excluded from school, something Bercow’s Bill had sought to address.

This is important work. These are not grandiose schemes for combating autism, defeating autism or ramping up research efforts into possible causes and cures. But they are honest attempts to improve the lives of autistic children and adults. The NAS and its allies will continue to monitor the government response to ensure that its deeds do in fact match up to the commitments it has made in response to our campaigning.

Autism Science Foundation are blogging

28 May

Just a quickie. Autism Science Foundation are now blogging. So far there’s only one post up but already our very own Sullivan has got in there to comment. I’d love to see some autie opinion making a splash on there!

ASF also have their own Facebook Group for those who like to get their social media on. Oh yeah, lets not forget the website whilst I’m giving out link love.

Autism/vaccine activists likened to AIDS denialists

28 May

One of my big worries is that the public will someday turn against the autism community. We, and all segments of the disability community, all rely heavily on the public’s good will. One way we could lose that is if epidemics of infectious disease return and people point the fingers at “autism spokesperson” Jenny McCarthy. We as a group could be in for some real trouble.

One reason to blog and advocate against pseudoscience and dangerous celebrity advice is to make it clear that the autism community as a whole is not behind Jenny McCarthy and her crowd.

So you can imagine the dismay I feel when I search for autism related articles in the Nature journals and I hit upon this one, The dangers of denying HIV.

Why would that article come up using the search word “autism”, I wondered. AIDS denialism is a truly horrible movement in the world. It leads, quite clearly, to disease, suffering and death. Probably no where is AIDS denialism more a problem than in South Africa. The author of this brief note in Nature, Seth Kalichman, notes:

Inadequate health policies in South Africa have reportedly led to some 330,000 unnecessary AIDS deaths and a spike in infant mortality, according to estimates by South African and US researchers. This carnage exceeds the death toll in Darfur, yet it has received far less attention.

This is, he argues, due in large part to AIDS denialism–promoting the idea that HIV does not cause AIDS and encouraging people to forgo treatement.

The tragic events in South Africa have been exacerbated by AIDS ‘denialists’ who, Kalichman alleges, assert that HIV is harmless and that antiretroviral drugs are toxic. The author discusses the psychology of denialism, which he says is “the outright rejection of science and medicine”.

Dr. Kalichman makes it very clear that denialists are acting outside of the boundaries of decency:

Kalichman dismisses denialists’ attempts to portray themselves as intellectually honourable dissidents who question accepted wisdom. He draws clear distinctions between dissidence and denialism; the latter, he says, is merely a destructive attempt to undermine the science.

What does this have to do with autism? Dr. Kalichman groups vaccine-autism groups in with AIDS denialists in their tactics:

Groups that support intelligent design, doubt global warming, claim that vaccines cause autism, argue that cigarettes are safe, believe that the terrorist attacks of 11 September 2001 were an intelligence-agency plot or deny the Holocaust all use similar tactics.

That is an “ouch” moment. To see that the outside world is starting to group autism activists with so many denialst groups is troubling, to say the least. If there are more outbreaks of disease that can be tracked back to vaccine rejectionism sparked by autism groups (for example, recent outbreaks of whooping cough), we are in for a public relations nightmare.

If you don’t think the analogy to AIDS denialists is well earned, consider this passage:

Kalichman describes how quacks, like some of the academics involved, misrepresent their qualifications to create an illusion of authority. One, he claims, treats AIDS with hyperthermia, massage, oxygen, music, colour, gem, aroma, hypnosis, light and magnetic fields, each word followed by “therapy”.

We have certainly seen inflated qualifications and the list of therapies could easily be attached to autism.

It isn’t as though Dr. Kalichman hasn’t read up on autism, either. He concludes his piece with:

Action might have widespread benefits: Paul Offit’s tour de force, Autism’s False Prophets, claims that pseudoscientists and quacks have used similar tactics to parasitize the suffering of desperate parents by persuading them that vaccines cause autism. As Kalichman says, denialism “will not break until the public is educated to differentiate science from pseudoscience, facts from fraud”.

“denialism will not break until the public is educated to differentiate science from pseudoscience, facts from fraud”

I wonder if that time will ever come?

Bravo Huffington Post

28 May

Yep, you read correctly. I’m not even sarcastic.

Guess who the new Huffington Post blogger is? Ari Ne’eman of the Autistic Self Advocacy Network.

Ari’s first post is a good one, Health Care Reform and the Disability Community. Ari has done an excellent job of keeping focus on the real issues facing the disability community in general and the autism community in specific. Ari recognizes that we in the autism community are a part of a greater whole–the disability community.

Ari’s post is quite thorough, quite well thought out. He is factual and logical.

Take a moment and leave a comment–let him (and the Huffington Post) know how much we appreciate him fighting for our communities.

Lessons from the Vaccine–Autism Wars

27 May

A very interesting (and long) read from Public Library of Science (PLoS) entitiled A Broken Trust: Lessons from the Vaccine–Autism Wars was published today. It takes apart the history of the vaccine/autism wars and tries to involve scientists on why they think – or what their particular discipline leads them to conclude – the autism/vaccine wars have become so protracted and bitter.

I’ve mentioned before – its always a bit of a strange, unreal sensation to see events in which you’ve been involved with – even as remotely as blogging about them – talked about as history. They say history is always written by the winning side. I hope articles like this don’t lead scientists to think that the war is over, the history is being written and they can go back to academia with no more comment necessary.

The PLoS article ends thusly:

Personal stories resonate most with those who see trust in experts as a risk in itself—a possibility whenever people must grapple with science-based decisions that affect them, whether they’re asked to make sacrifices to help curb global warming or vaccinate their kids for public health. Researchers might consider taking a page out of the hero’s handbook by embracing the power of stories—that is, adding a bit of drama—to show that even though scientists can’t say just what causes autism or how to prevent it, the evidence tells us not to blame vaccines. As news of epidemics spreads along with newly unfettered infectious diseases, those clinging to doubt about vaccines may come to realize that several potentially deadly diseases are just a plane ride, or playground, away—and that vaccines really do save lives.

I don’t disagree with any of that but I’ll now directly quote comment No.2 left after the PLoS article. A comment posted by a user called ‘bensmyson’ (and already I’m sure the battle hardened amongst us have recognised the type of person with a username like that).

Not that anything I say matters, but vaccines are not safe. My son at 12 months received ProQuad, a MMRV, later that month Merck pulled it from the market. My normally developed child with superior language skills developed encephalitis and as a result lost all those skills and developmental milestones and regressed into what has been diagnosed as autism. I know they aren’t safe because my son suffered a brain injury as a result. According to VAERS, 8 people have died because of ProQuad, Merck filed two of those reports themselves.

I’m not a scientist, just a parent of a child that got lost immediately after his 12 month vaccines.

With all due respect to the PLoS article which I really did enjoy reading and made very good points, I think the main point they either missed or that they are too polite to state out loud is that quite a lot of people _really don’t want_ to think it wasn’t vaccines.

The quoted comment demonstrates a lot of the hallmarks of what I think of as a sub-genre of anti-vaccine ideology – the autism antivaxer.

1) The immediate portrayal of themselves (not their child you’ll note) in the role of victim (‘Not that anything I say matters…’)
2) A coincidental regression into autism following vaccination with overtones of fault on the behalf of a vaccine maker/doctor/scientist
3) A statement that they _know_ (not think, not believe, not ‘are sure’) vaccines aren’t safe because their child _was_ damaged ) _as a result_ (‘I know they aren’t safe because…’) of having one. Note the lack of any sort of logic or requirement for evidence.
5) A reliance on a ‘sciency’ sounding method of backup which in reality offers no such thing (‘According to VAERS…’)
6) An emotive sign off with an appeal to false knowledge (‘I’m not a scientist, just a parent…’)

These are people who have spent a long time online and offline sharing time with other people of a like mind. They have stopped thinking critically and have started thinking communally. Stepping away from the voice of the community would be dangerous for both their continuing friendships and also for their own state of mind, therefore it is easier all round to simply lock out everything that presents any sort of difficulty or challenge to their belief system. If PLoS or anyone else thinks that these people (those clinging to doubt about vaccines) ‘may come to realize that several potentially deadly diseases are just a plane ride, or playground, away—and that vaccines really do save lives.’ then I’m afraid they are deluding themselves. I’ve had conversations with people just like ‘bensmyson’. Here’s a choice quote from one such debate from Twitter:

kids without #vaccinations more likely to get whooping cough. isn’t that better than getting shot up with #antifreeze ?

Doesn’t that make your head hurt just reading it? This person is happy to announce that:

1) There is anti-freeze in vaccines, which there most definitely is not.
2) Its better to get whooping cough than a DTP jab. I wonder if the poor parents of Dana McCaffery feel that way?
3) The reason its better to get whooping cough (a potentially fatal illness) is that the vaccine has antifreeze in it (which it doesn’t).

The level of arrogance, conspiracy mongering, self-pity and anger amongst too many of these people is so very much more than the PLoS article accounts for. Good as the article is, I fear its far too early to begin the dissection of this stage of the recent past.

Edited for typos via email by Sully. Ta 😉

Why Generation Rescue shouldn’t be on the IACC

27 May

I have been very critical of the lobbying efforts of Generation Rescue. I have found their actions to be far from helpful in the struggle to obtain quality research for people with autism. One issue I haven’t covered is the fact that Generation Rescue has been lobbying hard for a seat on the Interagency Autism Coordinating Committee (IACC).

The IACC, as you might guess, coordinates research efforts amongst various government agencies. They do this by creating a “strategic plan” which puts forth initiatives that should be funded. For example, one “short term goal” listed on the Strategic Plan is:

Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.

We need a lot more research like that if we are to serve our existing adult population and prepare for the kids of today to transition into adulthood.

This sort of research, oddly enough, isn’t supported by many of the autism advocacy organizations. Instead, they see the IACC as a pathway to their singular goal: recognition of the supposed link between vaccines and autism.

The fact of the matter is simple–Generation Rescue should not hold a seat on the IACC. The reasons are simple, and are below:

1) Generation Rescue’s position is already represented on the IACC.

I have never heard any complaints from the Generation Rescue team about Lyn Redwood. Lyn Redwood represents, quite vocally mind you, the “autism is caused by vaccines” segment of the community. She pretty much dominates much of the discussion, steering it towards vaccines as much as possible.

Ms. Redwood is ably assisted in steering all discussions towards vaccines in one of the working groups by Mark Blaxill. Again, I have never heard anyone from Generation Rescue say, “Dang, that Mark Blaxill just doesn’t get our point of view!”

So, if the Generation Rescue position is already represented, why give GR an official position?

2) Just because there are multiple organizations, doesn’t mean that the IACC has to include them all.

Besides their position on vaccines, what do Generation Rescue, Safe Minds, TACA and the National Autism Association have in common?

You can’t join them and vote for their leadership.

I just see these as different faces to the same overall autism group. Actually, I see them as mostly vaccine oriented advocacy groups, not autism advocacy groups, but the point is the same: why give each of these groups their own seat on the IACC.

Think for a moment—why should a few people be allowed to create an “organization” and ask for separate representation? If each subgroup wants to have control over their own budgets and give each member big titles, that’s just fine. But, when it comes to representation on a government body, why should every faction of what is, really, one big vaccines-cause-autism group be given a seat at the table?

Yes, this is much like item (1)—all of these groups already have their opinions represented by Lyn Redwood. There is no need or value in giving them more seats on the IACC.

3) This would lead to even more wasted time.

The IACC is a group that has very limited time to work on a research plan. Work being the operative word. Already, a LOT of time is taken up carefully crafting each and every phrase that might give credence to the vaccines-cause-autism story.

Imagine now if even more time were taken up in these discussions. Please, no. There is a great deal of expertise represented by the scientists on the IACC. We as taxpayers and as members of the greater autism community deserve to benefit from their expertise. We don’t need to hear twice as much (or more) vaccine-oriented discussions.

4) Generation Rescue has clearly demonstrated itself to be anti-science.

Generation Rescue’s recent “study” on vaccines and health outcomes around the world was, in a word, dishonest. The fact that they would promote such a manipulation of facts should disqualify them from sitting on a research based committee.

They either don’t understand research, or they are willing to misuse “research” to promote a political agenda. Either way, I don’t see why good researchers in the field should have to share a committee with Generation Rescue. Moreover, I really don’t see how Generation Rescue can lead the way in directing autism research given their demonstrated lack of understanding of the principles of research.

5) They don’t want their voice heard, they want to be able to outvote the scientists.

As noted above, Generation Rescue’s positions are very clearly communicated on the IACC already by Ms. Redwood. What Generation Rescue wants is a large enough voting block to outvote the scientists on the committee.

Read that again—they want to outvote scientists on a committee designed to coordinate research.

Sorry, you don’t vote down science.

And, once again, why should all the different heads of the same beast (TACA/Generation Rescue/SafeMinds/NAA) be treated as separate entities?

6) They are rude.

The culture of Generation Rescue is not one of working as a team with others. You either agree with their position, or people shout “BullShit” loudly at you.

Yes, there is already rude behavior on the IACC. Mark Blaxill, for one, has spent considerable amounts of time calling anyone who disagrees with his untenable position on mercury “Epidemic Denialists”. We don’t need more of that, and Generation Rescue goes well past that level on the impoliteness scale.

Sorry, I just can’t find any advantage to having Generation Rescue represented on the IACC. I can see a LOT of disadvantages, though

What do corrupt politicians tell us about autism policies in the UK?

26 May

One strand of thinking in those who promote the autism-MMR vaccine hoax in the UK is that the political system is corrupt. At the worst level this leads to conspiratorial thinking, as in this statement from an Independent leader from February 24th 2004:

Are we wrong to detect the distant whirr of the same spin spin machine that so recently set about destroying the reputations of David Kelly, Andrew Gilligan and others?

John Stone, an active JABS (the UK’s leading anti-vaccine site) activist who now writes for Age of Autism, recently posted a call to arms by Alison Edwards on the MPs’ expenses controversy. Her post reminds us that much of the controversy about MMR vaccine is possibly displacement activity after struggles to obtain help and support. After a go at MPs’ expenses, she draws her inspiration from her son.

My son is my inspiration, he has no idea of the anger I harbour at what I have been forced to endure since the day his MMR left him unable to control his bowels. Not to mention the other battles for services and therapies, the list of refusals is a familiar one to anyone caring for an autistic or disabled child. All we can do it watch as our young morph into adults before our eyes. Yet our claims to assist the most vulnerable with their most basic needs, go unheard.

WE, THE PEOPLE, DEMAND THE DISSOLUTION OF PARLIAMENT.

Being angry about MPs expenses is a reasonable position, but there are many other issues others have been fighting for, and they should feel equally aggrieved. Think of any lobby group, and you can probably come up with a reasonable view that more attention should have been paid to it, than were paid to the acquisition of LCD TVs, the cleaning of moats, and other such pathetic squandering of taxpayers’ money.

The corruption is spread throughout the parties, and throughout MPs of all views within them. For example, Julie Kirkbride is a UK MP who has expressed views on MMR vaccine, to the detriment of an autism campaign launch; a microcosm of the general effect the MMR-vaccine-autism hoax has had on autism awareness in the UK:

she had chosen the same day to hold her own conference at Westminster to highlight alleged links between autism and the controversial MMR vaccine.

“I am furious that a conference that could have been held yesterday or could have been held tomorrow is being held on the day that we are actually trying to focus, for once, on the needs of autistic people instead of this debate over MMR,” he told BBC Radio 4’s Today programme.

“This is the first major conference of autism awareness year. It has been organised for months. To detract attention from it today of all days is, I think, pretty silly.”

Julie Kirkbride is now under intense pressure over expenses. Does this have any bearing on her position on MMR vaccine? Not all all.

The expenses saga may remind us of the sense of entitlement of UK MPs and their failure to police their own behaviour, but it tells us nothing about public policy on autism or vaccines.

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