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Brian Deer talks back to Andrew Wakefield

7 Jul

I was copied in to the following:

Date: Mon, 06 Jul 2009 18:12:00 +0100
To: “Joanna Bower”
From: Brian Deer
Cc: Thoughtful House

Ms Joanne Bower,
RadcliffesLeBrasseur LLP

Dear Ms Bower,

Your client, Dr Andrew Wakefield, has published, and caused to be published, on his website, thoughtfulhouse.org, and on other sites, false claims that the Press Complaints Commission has issued an “interim order” concerning my investigation into his conduct. Dr Wakefield claims that The Sunday Times has been ordered by the PCC to remove my stories about him from its website.

I understand that the PCC has written to your client to point out that these claims are untrue. In fact, all of my stories concerning him are available at the Times Online website.

thoughtfulhouse.org is unquestionably controlled by Dr Wakefield, and his publication there has caused similar untruths to be published on websites either directly controlled for his interests, such as cryshame.org, which, as you may know was set up by Mrs Isabella Thomas, the parent of two of the children anonymised in the now-infamous Lancet MMR paper, or indirectly controlled for his interests, such as ageofautism.com, operated to promote and profit from concern over children’s vaccines.

It is, of course, nothing new for Dr Wakefield to mislead the public, and especially the parents of autistic children. He has faced the longest ever proceedings before a General Medical Council fitness to practise panel, following the GMC’s reinvestigation of my journalism. In due course, I’d expect he will face a hearing of the PCC, covering much of the same ground on a significantly different evidential base.

However, you may feel it advisable to explain to your client that either he accepts the untruth of his latest claims and takes them down, or he maintains them in publication, in which case his conduct would not merely be wrong, but would be dishonest.

With best wishes,

Brian Deer

http://briandeer.com

Eric London resigns from Autism Speaks

7 Jul

Dr. Eric London has resigned from Autism Speaks. I read his resignation letter a while back, but I held off blogging it until I could confirm it was legitimate. This letter is taken from the Autism Science Foundation blog.

After three years of great hopes for Autism Speaks being the optimal vehicle to advance autism science and treatment, I regretfully and sadly must announce my dissociation from this organization, including resignation from the Scientific Affairs Committee.

Despite the very excellent work that Autism Speaks has done in the area of awareness and legal advocacy, there are many differences which I have with the organization, mostly concerning the direction and prioritization of the science program. There have been numerous decisions made which I believe have adversely impacted autism research and none of those decisions were made upon the advice of the Scientific Affairs Committee. The processes with which science decisions have been made have been contrary to my hopes and expectations when the NAAR-AS merger was effectuated.

If this were the only issue, I might have continued to try to work from within the organization to influence science policy and direction. However, the pivotal issue compelling my decision is the position which Autism Speaks is taking concerning vaccinations. The arguments which Dr. Dawson and others assert– that the parents need even further assurances and there might be rare cases of “biologically plausible” vaccine involvement –are misleading and disingenuous. Through its website and other communications, Autism Speaks has been influential and contributory in encouraging parents’ doubts. By preferentially investing and advocating for the use of limited financial resources on the “biological plausibility” argument, the organization is adversely impacting the advancement of autism research.

Recent reports have documented significant outbreaks of measles and other infectious diseases which could have been controlled and even eradicated. The lowering of the vaccination rate has already led to deaths. If Autism Speaks’ misguided stance continues, there will be more deaths and potentially the loss of herd immunity which would result in serious outbreaks of otherwise preventable disease. I further fear that if and when herd immunity is lost, there may be a societal backlash against the autism community.

In my role as an Autism Speaks Scientific Affairs Committee member, I would be lending credibility to an organization whose scientific agenda and positions I can no longer ethically support. Please accept my resignation, effective immediately. If anyone would like to discuss this with me further, please do not hesitate to contact me.

Sincerely, Eric London MD

This is pretty harsh criticism of Autism Speaks, which has touted itself as a science-based organization taking direction from the research community. Instead, it appears that decisions are being made in direct opposition to their own Science Affairs Committee.

You may recall that when the IACC’s Strategic Plan was released, Autism Speaks pulled support (whatever that means) based on the lack of research into vaccines. No comment from Autism Speaks on lifespan issues, therapies or any other topic. Just vaccines.

The big question is whether Autism Speaks is just another Vaccines-Cause-Autism organization but hiding under a cloak of science. If so, they should let the donors know so they can take their money elsewhere.

Wakefield, distortion and the Sunday Times

3 Jul

The journalist Brian Deer has done as much as anyone to investigate the background to what Ben Goldacre describes as the MMR Hoax. In the course of his investigations he discovered undisclosed conflicts of interest by Andrew Wakefield that led to most of the authors of the original paper in the Lancet withdrawing their names and the editor publishing a retraction.

Then in February this year Deer published his latest investigation. The Lancet paper had already been dismissed as bad science. Now, if Deer’s findings were correct, it would seem that some of the data had been deliberately falsified. Wakefield responded by complaining about the article to the Press Complaints Commission. The Times stood by its story and also forwarded all details to the General Medical Council who are still investigating Wakefield over allegations of misconduct.

And that was it until this week, when Thoughtful House, the clinic that Wakefield has established in Texas, issued a press release announcing

Press Complaints Commission Orders Sunday Times to Remove MMR journalist’s Stories on Dr. Wakefield from Paper’s Web Site

It goes on to suggest that this “interim order”

appears to indicate there are questions about the accuracy of the Deer stories.

Of course it does no such thing. Thoughtful House even quote Stephen Abell of the PCC as saying that

Given the ongoing nature of the dispute the articles should be removed from the newspaper’s website until this matter has been concluded. This would not be an admission of any liability on the part of the newspaper.

The wording reveals what actually happened. The Sunday Times has not been ordered to take down the articles. The PCC decided to postpone its investigation until after the GMC reaches a decision on the allegations of misconduct. This makes sense. If Wakefield is found guilty the complaint will fail. Meanwhile the PCC has asked the Sunday Times to remove the article from its website until matters can be resolved and the Sunday Times has agreed. That tallies with the email I received from the PCC

The PCC has considered the matter initially and has elected to stay its investigation until the conclusion of the GMC inquiry. It has reached no formal decision on the substance of the complaint and there is no published ruling on our website.

The Commission has asked that the paper remove the articles temporarily until the conclusion of the PCC investigation. This is without any admission of liability on the paper’s part.

So no order was issued, no judgement was made and there is no suggestion of impropriety by Deer or the Sunday Times. All the suggestions come from one source, Wakefield himself. His friends on the web may try to pretend that this is further proof of the brave maverick doctor’s innocence in the face of a vicious campaign against him. I think they are clutching at straws.

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Time for a cordon sanitaire?

28 Jun

The politics of autism are enmeshed in the debate about vaccine safety over the past ten years, and will take years to be disentangled. In the UK things might be changing, but in the US high profile celebrities have given a late push to fears that by now should be consigned to history. The BMJ have run a feature piece on the “Vaccine Disputes” currently running, focusing on both the UK and US experience. Here are some points made about the UK’s anti-vaccine movements, that both highlight the problems these groups pose for vaccination policies and autism, and their weaknesses.

One of the main drivers of the safety fears are antivaccine groups. Prominent among the UK groups is Warrington based JABS, whose website still maintains that “some children have and will continue to be damaged by combined and single dose vaccines.” Founder Jackie Fletcher has a son with epilepsy and brain damage, which she blames on the MMR vaccine. Her views are widely quoted by the mainstream media.

Another group is the One Click Group, whose tactic is to circulate by email a digest of antivaccination press cuttings, “Mother wants answers as baby dies from vaccine,” is one recent headline taken from a local paper in Trinidad and Tobago. The group has emailed several members of BMJ staff, all of whom found themselves unable to unsubscribe from the unsolicited email. The group, run by a former public relations worker, Jane Bryant, is especially uncompromising in its message. Ms Bryant first came to prominence campaigning to get chronic fatigue syndrome treated as a medical condition.

[…]

Pru Hobson-West, a senior research fellow at the Centre for Applied Bioethics, University of Nottingham, has identified and studied 19 groups in the UK that are critical of vaccinations.5 They included Action against Autism in Glasgow and the London based vaccination.co.uk. She found the groups were all relatively small and led by one or two parents, with a membership base ranging from 60 to 2000.

Ms Hobson-West discovered the more radical groups didn’t necessarily have personal experience of vaccine damage but were often seasoned campaigners for causes such as alternative health and animal testing.

Pru-Hobson-West’s comments ring perfectly true. The same names tend to reappear like weeds in pavement slabs, and a degree of cross-over of key individuals between organisations seems apparent. What we have are highly motivated axe-grinders, some of whom may be motivated because they feel they have genuine grievances. Some, however, are complete crackpots with no stake in either vaccine safety or autism, apart from slightly unhinged views on a variety of subjects. These lead them to take an anti-vaccine stance. So, we have alternative health practitioners with a ideological opposition to vaccines, obsessional individuals who think Roy Meadows is part of a huge establishment conspiracy, and the author of a website that believes vaccines are part of a genocidal plan, while at the same time promoting holocaust denial material. The One Click Group has even resorted to homophobic arguments. These are not people to be taken seriously. In fact, these are people to studiously avoid. Any autism organisation would do well to throw up a cordon sanitairearound such parties and their associates. Here’s how they treat individuals.

David Salisbury, director of immunisation at the Department of Health, says he has received threats at home and at work from activists. He says the “degree of anger” seems similar to that of animal rights activists. “One GP who used to be connected to JABS recommended that capital punishment was appropriate for me. Why should I accept it? This degree of personalisation.”

Neither Generation Rescue nor JABS replied to my questions.

The One Click Group was hostile when I approached them with some straightforward questions. I was directed to another charity and, bizarrely, Peter Fletcher, former chief scientific officer at the Department of Health. When I asked to be taken off its mailing list I was told: “Unsubscribing from the One Click News Alerts requires one mouse click. If this is beyond you, never mind eh?”

And yet the media (including the BBC and broadsheets) continue to give these organisations publicity.

Professor Salisbury says: “There is no doubt that the media give disproportionate weight to the [antivaccine position]. Look at the frequency that journalists writing articles about immunisation go to Jackie Fletcher for a comment.”

“For some campaigners no study is acceptable if it continues to show no link—you get answers by rote: the study was weak, didn’t look at the right children, didn’t use the right method. It’s like AIDS denialists, and there are evidence denialists. The constituency base [of these groups] has got narrower and narrower. There are a diminishing number of people who think [there is a link]. Look at the number of people who contribute to the JABS website; it’s down to a tiny number.”

He’s right. These groups are increasingly talking to themselves (at least in the UK). They have nothing to offer.

Rethinking Autism

25 Jun

There have been many push-backs to Jenny McCarthy and her views on autism. There has been a lot of blogging, including right here on LeftBrainRightBrain. There is a website StopJenny. There is a Jenny McCarthy body count. Now there is a new site, Rethinking Autism. While it doesn’t directly mention Jenny McCarthy, it is pretty clear that she was a prime motivator for that project.

The person who created Rethinking Autism describes herself this way:

I am the mother of an autistic boy. I have had enough of the pseudo-science quackery that certain celebrities are pitching to parents of kids with autism. The media is concentrating on the pseudo-science and there needs to be a forum for more tried and tested information. It is virtually impossible for an individual to deliver a counter-message, but I may have found a way with RethinkingAutism.com.

The main page carries this message:

All too often in the world of autism, celebrity and sex appeal are used to promote pseudo-science that exploits autistic people, their family members and the public. We decided to put those very same factors to work in service of the truth.

What is her method? Videos. Not just videos, but videos that use autism, celebrity and sex appeal. OK, the Rethinking Autism “celebrity” is not as well known as Jenny McCarthy, but you will get the idea with these videos, by Leeann, who:

Leeann is the friend of a family with an autistic child. When asked if she would help, she graciously agreed. She immediately understood the tongue-in-cheek nature of the spots and, as you’ll see, brought her “A” game!

I’m also rather fond of this one…

There are a number of good videos, as well as concise, clear “key concepts”.

I got a good chuckle out of the videos–and I like the message being sent.

Over at Lisa Jo Rudy’s Autism.About.Com blog, there has been some discussion of these videos. Lisa poses this thought:

In my opinion, Commandatore may get a good deal of personal publicity for her arty and provocative style. She’s also likely to get a lot of flack for her anti-feminist, disrespectful approach to autism education. She’s unlikely, however, to make much impact as an educator.

The way I see it, this is as much a satire on the entire “sex sells” advertising culture as the vaccines-cause-autism-gotta-cure culture. As such, I didn’t see it as anti-feminist. However, I am a heterosexual male and a product of the “sex sells” culture, so I may be biased.

There is also discussion in the comments there about whether Jenny McCarthy was in any way an inspiration for the Rethinking Autism website. Commenter Lynne states:

Jenny isn’t posing seductively to tell the story of her son or otherwise leveraging her sexuality to share her experience with autism with other families. It’s a HUGE leap to say that Jenny McCarthy is responsible in any way for these totally dumb videos.

I find it odd that people who can draw such concrete conclusions from such bad data (i.e. vaccines caused an epidemic of autism, or Jenny McCarthy has a cure for autism) can’t see what is a much more simple connection. I’d bet good money that Rethinking Autism wouldn’t exist if it weren’t for Jenny McCarthy. And, what’s with that “…or otherwise leveraging her sexuality…”. Please. Jenny McCarthy has been leveraging her sexuality for about 20 years now. Do you really think that Jenny McCarthy would be on Larry King Live or Oprah without her career selling her sexuality? Come on.

Consider this. Before Jenny McCarthy telling about vaccines causing autism and recovered kids there was Stan Kurtz. Mr. Kurtz is quite good at self promotion too. But, this is Stan Kurtz:

Stan Kurtz

Stan Kurtz

Not a bad looking guy, but no potential male model either. Not a celebrity. No autism national exposure pre-Jenny McCarthy either. Yes, correlation is not causation. But, really, does anyone think he was going to be invited onto, say, The Doctors, without Jenny McCarthy?

Sorry, there is a very clear reason why Jenny McCarthy gets camera time. It isn’t because she is such a good writer (I’m not impressed). It isn’t because her message is new (it isn’t). I welcome Rethinking Autism’s approach to both the Jenny McCarthy message and the “Sex Sells” culture.

It’s new! It’s spam! It’s revitaPOP: The MB12 Lollipop

23 Jun

I just got a nice spam email from Stan Kurtz, inventor. See, he invented this lollipop with methyl B12 in it to cure…well…almost everything.

Actually, I am a bit confused on that point. I often am from claims in alternative medicine. You see, from his website, Mr. Kurtz states

MB12 is a very unique vitamin and deficiency can affect vision, intestinal function, the ability to protect against infections and toxins, nerve functioning, and DNA replication.

Dang, it protects against DNA replication!?! Does that sound, well, problematic to anyone else? (see comments below. I mis-read the above statement.)

On his website, Stan Kurtz himself tells us that:

What I can tell you is that MB12 truly changed my life. I suffered for years with irritable bowel symptoms, chronic viral infecitons and ADHD and after I took this product I felt better. Since then I’ve personally observed hundreds of people’s lives change through the supplementation of MB12.

You see, it doesn’t “treat” anything, but it changes your life if you have certain disorders. Also, mB12 is “involved in” a whole host of disorders. No direct claims that mB12 supplementation “treats” the disorders. Just a great big implication.

But, then there is the disclaimer. Always a disclaimer. Gotta have a disclaimer.

These products are not intended to diagnose, treat, cure or prevent any disease

No use spending a lot of time on the contradictory nature of claims made by people touting supplements. Mr. Kurtz didn’t invent this sort of doublespeak, and he won’t be the last to use it.

Still, I thought this “revitapop” thing was odd, so I checked a few things out. Like, Stan Kurtz’s otehr website which touts the benefits of MB12, but also states:

Stan has chosen not to sell or profit from the use of this vitamin.

I guess it depends on your definition of the word “sell” or “profit”? $35 for 30 lollipops sounds like there could be room in there for profit.

What also caught my eye was this: “* patent pending”. It caught my eye because I thought, “How can someone patent this?”

I can’t find the patent application for the lollipop version of MB12, but I did find the patent application for his MB12 nasal spray. Patent application US29012039A1.

Claim one of the patent describes the vast number of disorders that are “treated” with this nasal spray:

A method of treating a psychological or neurophysiological disorder, comprising nasally administering methylcobalamin, or a pharmaceutically acceptable salt thereof, to a person in need of such treatment in an amount sufficient to treat the disorder in the person, wherein the disorder is selected from the group consisting of:attention deficit hyperactivity disorder (ADHD), anxiety, depression, stress and chronic stress, socialization problems, mood problems, behavior problems, memory problems, dislexia, depth perception problems, color viewing problems, visual and auditory processing problems, light modulation problems, night vision problems, speech problems such as finding words, apraxia, and articulation problems, sleep regulation problems, eye or muscle movement problems, chronic fatigue problems, digestion problems, sensitivity to chemicals, viral infection, inflammatory conditions such as rheumatoid arthritis, sciatica, and fibromyalgia, asthma, irritable bowel, colitis, tinnitus, migraines, nail biting, and autoimmune problems.

Typical of alternative medical treatments–they treat everything. Always a warning sign, if you ask me. It is interesting to me that autism is not specifically mentioned in the patent. There must be a reason for that.

Is this really new, or novel, as they say in the patent business? It seems that that there is already a patent on nasal sprays to administer Vitamin B12, Vitamin B12 nasal spray and method of use. Filed in 2006, and it mentions mB12.

There is a phrase in patent law: obviousness. Taking one invention, say, mB12 nasal spray, adding it to another supposed invention, treating certain disorders claimed to respond to mB12 is, well, obvious. As they say, anyone “skilled in the art” would put those together.

Even if this doesn’t meet the definition of non obvious, I still think this patent has little chance of success. Consider this paragraph from the US Patent office:

In order for an invention to be patentable it must be new as defined in the patent law, which provides that an invention cannot be patented if: “(a) the invention was known or used by others in this country, or patented or described in a printed publication in this or a foreign country, before the invention thereof by the applicant for patent,” or “(b) the invention was patented or described in a printed publication in this or a foreign country or in public use or on sale in this country more than one year prior to the application for patent in the United States . . .”

(emphasis mine)

Mr. Kurtz’ patent application was field March 17, 2008.

mB12 nasal sprays–as touted by Mr. Kurtz himself–have been discussed online since at least 2005. I guess Mr. Kurtz is counting on the patent examiner not checking the AutismOne website for Mr. Kurtz’ own talk on nasal spray mB12 in 2006. But, even without that, Mr. Kurtz’ own website has discussions of the nasal spray from March 16, 2006– that predates his patent application by 1 year. 1 year and 1 day. Ironic, that.

It will be interesting to see the lollipop patent application. I mean, there are vitamin B12 lollipops already, too. I wonder when Mr. Kurtz first publicly discussed his lollipop invention? Did he shoot himself in the foot here too?

Jake Crosby’s great big straw man

10 Jun

I’ve said it before—a blogger could spend his entire online time debunking blog posts from the Age of Autism. Between the pseudoscience and the bad policy promoted on that site, it is draining to just read it on a regular basis, much less respond. A few weeks ago a particularly bad post came through and I wanted to respond but, frankly, I just didn’t have time. The post was by Jake Crosby about a (then) upcoming article in Newsweek about Ari Ne’eman.

It is no secret to people who read this blog that I admire Mr. Ne’eman. A rough analogy is that Ari Ne’eman is to autism advocacy what David Mandell is (in my mind) to autism science: a person who is asking the right questions and staying above the vaccine debates. Mr. Ne’eman founded the Autistic Self Advocacy Network (ASAN).

It really is worth taking a few minutes to read the Newsweek article. I read it online, read Kev’s blog post, and then stumbled upon it in my doctor’s office last Friday.

Erasing Autism

Scientists are closing in on the genes linked to autism. So why is Ari Ne’eman so worried?

Since I am discussing Mr. Crosby’s blog post, you should read that as well. The history leading to that post is somewhat sad. A reliable source I know says that prior to the publication of the Newsweek article, Stephen Shore leaked the information. This led to a blog post by John Best, including death threats. Jake Crosby at the Age of Autism decided to blog his own misconceptions about it. Here’s one bit of advice for Mr. Crosby: when you are pickup up stories from John Best, fired Generation Rescue “Rescue Angel”, you are putting yourself in really bad company**. I am sure Mr. Shore did not intend to precipitate a blog post by John Best. At the same time, I hope Mr. Shore is somewhat chagrined to realize that this happened.

Mr. Crosby’s blog piece had a fairly simple theme: “don’t publish the Ari Ne’eman article; interview me instead”. Or, failing that, “Give me equal time”. We all knew (and I assume Mr. Crosby is intelligent enough to know as well) that his was an empty commentary: the article was already in press. There was no way to either pull it or to add Mr. Crosby’s comments*. But, it makes good blog fodder and may get Mr. Crosby’s foot in the door for future articles by Newsweek. Somehow I doubt Newsweek is impressed by strawman arguments, but, who knows, Mr. Crosby might appear on their radar now.

Let’s do what Mr. Crosby didn’t do. Let’s really look at what is being said and done by Mr. Crosby, Mr. Ne’eman, ASAN, Newsweek…you know, let’s discuss some facts.

Mr. Crosby has taken on one of the Age of Autism’s favorite tactics: the “straw man argument”. He pretends that Ari Ne’eman promotes the idea that autism is not a disability. There is a common tactic amongst those who dislike Neurodiversity: try to define it to be something it isn’t. I understand the motivation: it is really hard to go out in public as an autistic or the parent of an autistic and say “I am against a movement that thinks autistics deserve civil rights”. But, they people try this argument all the time. Case in point, Mr. Crosby’s blog post:

Neurodiversity is an ideology supported primarily by some autistic individuals and parents who do not believe that autism is a disability, and opposes any potential cure.

The statement was clearly false when Mr. Crosby wrote it. Mr. Ne’eman clearly considers autism to be a disability. I hope that Mr. Crosby was duly embarrassed when the Newsweek article was published, including a simple statement outlining Mr. Ne’eman’s position on the autism spectrum:

It’s a disability, yes, but it’s also a different way of being, and “neurodiversity” should be accepted by society. Autistic people (he prefers this wording to “people with autism,” a term many parents use, because he considers the condition intrinsic to a person’s makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to.

See what I mean? I find it amazing that a person with an ASD like Mr. Crosby could be against accommodations, independent living, and acceptance as people. So, rather than address this issue head on, he builds his straw man.

The real argument, we all know, is about the “cure” question. Mr. Ne’eman believes that Autistics should be allowed to say, “I don’t want a cure” and “please respect me as for who I am: autistic.” For those using pity politics to promote a cure agenda, people like Mr. Ne’eman are very tough obstacle to overcome. Case in point, a quote from the Newsweek article:

“There’s a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place,” he says. “That’s not true.”

Mr. Crosby has cast his lot with the pity-politics groups represented at the Age of Autism blog. That’s fine, it is his right. He is even within his rights to misrepresent other people and organizations in order to further his own ideology. I don’t think it is a good idea, or that it makes sense, but it is his right.

Mr. Crosby makes a number of completely unsupported assertions.

Yet, it appears there has been a mainstream media blackout on those of us within the community who publicly disagree with that point of view.

When I first read “Media blackout” all I could think was: do a Google news search for Jenny McCarthy and for Ari Ne’eman and get back to me on that one, would you Mr. Crosby? But, Mr. Crosby is lamenting the fact that autistic voices that dissent with Mr. Ne’eman are not heard. Well, perhaps that would change if, say, Generation Rescue or any of the other organizations who sponsor Mr. Crosby’s blog writing would put autistic people in prominent positions? Isn’t it ironic that this is exactly the sort of thing ASAN is promoting? Nothing about us without us. If Generation Rescue would listen to ASAN, perhaps Jake Crosby would have his platform. Instead, he supports groups that have no autistic representation.

Mr. Crosby uses another common Age of Autism tactic: use every chance possible to promote the “epidemic”. He argues against the “epidemic denialists” who don’t agree with the mercury-autism hypothesis. One thing I admire about Mr. Ne’eman is that he doesn’t spend much (if any) time on the “epidemic” and, instead, fights for the rights of people with disabilities.

Jake Crosby has to dig deep in order to find reasons to criticize Ari Ne’eman. Case in point, from a second blog piece by Mr. Crosby:

Then the Ari Ne’eman piece ran online a week later and then in the May 25th issue, where he professed his anti-cure views while expressing an unfounded fear of the unproven idea that autism can be prevented through eugenics.

Mr. Crosby plainly gets it wrong. The argument isn’t that autism can be prevented through eugenics. The argument is that with a good genetic test, one might in the future prevent autism through eugenics.

If one can find anything amusing about eugenics discussions, it might be this: Jake Crosby disagrees with JB Handley…and JB Handley agrees with Ari Ne’eman. You see, JB Handley has also raised the worry about genetic testing leading to a form of eugenics in a piece Autism Speaks: The Abortion Industry’s Best Friend.

Mr. Crosby closed his first blog post with this lament:

Unfortunately, I have not been as active as I would have liked since I am in college and just declared my major in history

Let me just point a few things out to Mr. Crosby: While an undergraduate, Ari Ne’eman has founded ASAN, worked in numerous states on bullying issues, special education reform, assisted living supports, issues for adults with autism and he was instrumental in getting the “Ransom Notes” ad campaign pulled. Mr. Ne’eman works with other disability groups to give advice to the federal government at high levels.

I don’t think he got where he is by making obvious staw man arguments about people he disagrees with.

Perhaps that is why Newsweek wants to talk to Ari Ne’eman and people like Mr. Crosby and myself are just blogging.

*Mr. Crosby has noted that he did not know that it would be difficult or impossible to pull or change an existing story. He also did not know beyond a vague “couple of weeks” how soon the article would be published.

**Mr Crosby states that his information did not come through John Best. I take him at his word and appreciate the fact that he doesn’t want to be associated with Mr. Best.

A vaccinated vs unvaccinated study

6 Jun

For as long as I can recall, this has been one of the clarion calls of the autism/antivaccine/pro-disease groups – that the only way to know if vaccines cause autism is to do a ‘simple’ study of vaccinated vs unvaccinated populations. Indeed, Generation Rescue carried out an ill-fated phone survey that in reality meant absolutely nothing so badly was it put together and carried out. But even if it _had_ been well designed and carried out the results were not good for pro-disease anti-vaccine autism believers:

Number of boys and girls with Aspergers
Unvaccinated: 1% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 2%

Conclusion: you are 1% more likely to have Aspergers if you have been partially vaccinated than unvaccinated. If you are fully vaccinated your chance of being Aspergers is no greater than if you were unvaccinated.

Number of boys and girls with PDDNOS
Unvaccinated: 2% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 1%

Conclusion: you are 1% more likely to have PDDNOS if you are unvaccinated. If you are fully vaccinated your chance of being PDDNOS is 1% less than if you were unvaccinated.

Number of boys and girls with Autism
Unvaccinated: 2% of total
Partially vaccinated: 4% of total
Fully vaccinated: 2%
Fully and Partially combined: 2%

Conclusion: you are 2% more likely to have autism if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is no greater than if you were unvaccinated.

Number of boys and girls with all ASD’s
Unvaccinated: 4% of total
Partially vaccinated: 6% of total
Fully vaccinated: 3%
Fully and Partially combined: 3%

Conclusion: you are 2% more likely to have an ASD if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is 1% less than if you were unvaccinated.

Overall conclusion: the best way to avoid being diagnosed with an ASD is to be fully vaccinated according to the CDC schedule.

And in September of last year, you may recall the announcement of yet another study that demonstrated there was no link between MMR and autism. During the press conference that launched that study David Kirby asked the lead author – Ian Lipkin – what his thoughts were about a vaccinated vs unvaccinated study. His answer was:

http://webjay.org/flash/dark_player

Very difficult if not impossible.

Given that, the US NVAC vaccine safety group released a draft of their latest thinking on the issue of vaccine safety which touched on the idea of doing this sort of study. The entire section related to this is quoted in full below:

Feasibility study of Vaccinated/Unvaccinated/Alternatively Vaccinated Children

Members of the public, stakeholders, and the Interagency Autism Coordinating Committee (IACC) have articulated interest in a study of vaccinated vs. unvaccinated children to determine if there are differences in health outcomes between groups with varying exposures to vaccines. The Working Group considered drafting a recommendation for an IOM review of the science, epidemiology and feasibility of studies of unvaccinated, vaccine delayed, and vaccinated children. The Writing Group Draft Document on Gaps in Research Agenda further developed this idea. The Working Group wishes to clarify several points on this topic. *First, the Working Group believes that the strongest study design, a randomized clinical trial that includes a study arm receiving no vaccine or vaccine not given in accord with the current recommended schedule, is not ethical, would not pass IRB review, and cannot be done*. The type of study that is being suggested would be an observational study of populations looking at natural variation in vaccination schedules including some children where vaccination is declined through parental intent. All children in the study should be recommended to receive the standard immunization schedule. The Working Group endorses the Writing Group’s recommendation for an external expert committee, such as the Institute of Medicine, with broad methodological, design, and ethical expertise to consider “strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs to examine outcomes in unvaccinated, vaccine delayed and vaccinated children and report back to the NVAC.”

The Working Group does not necessarily agree with all of the language in the Writing Group’s statement, but with its general intent. The process should be open and transparent, engaging individuals from a broad range of sectors. Considerations as outlined by the Writing Group and modified by the Working Group are as follows:

– This review should consider strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs and report back to the NVAC

– Consideration should be given to broad biomedical research including laboratory studies, and animal studies.

– Consideration should also be given to study designs comparing children vaccinated by the standard immunization schedule with unvaccinated children (by parental intention), and possibly partially vaccinated children or children vaccinated by alternative immunization schedules

– Outcomes to assess include biomarkers of immunity and metabolic dysfunction, and outcomes including but not limited to neurodevelopmental outcomes, allergies, asthma, immune-mediated diseases, and other developmental disabilities such as epilepsy, intellectual disability and learning disabilities.

– The inclusion of autism as an outcome is desired. This review should also consider what impact the inclusion of Autism Spectrum Disorders (ASD) as an outcome would have on study designs and feasibility, as referenced in the IACC letter to NVAC.

– This review should be conducted expeditiously, in a transparent manner, and involving broad public and stakeholder input.

So, as per a straight ‘vaccinated vs unvaccinated’ study, Ian Lipkin and NVAC Working Group agree that it can’t be done in the most scientifically accurate way and even if it could, it wouldn’t be ethical due to the requirement of excluding children from vaccination.

What they are saying is that a group like the IOM therefore should write up a feasibility study as to how such a study _could_ be done. Without this, its extremely unlikely that a vax vs unvax study will ever fly.

Amusingly, the way that the NVAC Working Group words a possible solution – vaccinated vs unvaccinated via parental choice – sounds pretty much like the Generation Rescue phone survey. And we know how that ended up.

ASAN Submits Amicus Brief to the US Supreme Court

2 Jun

I have a very high level of respect for the Autism Self Advocacy Network (ASAN). They one of the few autism groups (if not the only one) that actively works with other disability organizations.

Below is a statement from ASAN on the submission of an amicus (friend of the court) brief for a case before the U.S. Supreme Court.

The Autistic Self Advocacy Network, along with several other advocacy groups, has submitted an amicus brief to the United States Supreme Court in the case of Winkelman v. Parma City School District. The lawsuit was brought by the parents of an Autistic child who was not given the opportunity to continue receiving occupational therapy services in an Ohio school after the district had agreed that those services were necessary. The school district prepared an IEP stating only that a further assessment of the need for the services would be completed.

The Supreme Court is seeking to resolve a conflict among the Circuit Courts of Appeals, which have taken conflicting approaches to the question of whether a court’s analysis of the content of an IEP should consider only the written IEP or whether the court has discretion to consider other evidence as well.

Parents play a major role in developing an IEP, which is analogous to a contract with the school district specifying the educational services to be provided to the child. Related services such as occupational therapy also must be specified in the IEP pursuant to federal law as set forth in 20 U.S.C. § 1414(d)(1)(A)(4). School districts are prohibited from making unilateral decisions about a child’s IEP.

Consistent with the general rule that in contract law, evidence outside the written terms of the contract ordinarily is not admissible in court, three Courts of Appeals have ruled that only the written IEP should be considered in determining whether it is adequate. However, three other Courts of Appeals, including the court from which the Winkelman case was appealed, reached the opposite conclusion in deciding that an IEP lacking the required specific content could nevertheless be found valid based on consideration of other evidence.

The Autistic Self Advocacy Network is asking the Supreme Court to rule that when courts analyze the content of an IEP to determine its adequacy, only the written IEP should be considered. A school district should not be allowed to omit required content from a child’s IEP and then to assert later that it intended to supplement the IEP. Allowing districts to postpone decisions on the content of an IEP can lead to considerable delay in providing occupational therapy and other necessary services. The educational well-being of Autistic children and other students with disabilities is best served when they receive therapy without interruption or delay.

ASAN contact information:

Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC 20036
http://www.autisticadvocacy.org
732.763.5530

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.

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