Archive | August, 2008

Fax to Katie Couric

4 Aug

As you may have guessed if you’ve been reading this blog lately, the recent CBS story on the independence of vaccine supporters bothered me.

It bothers me that a news organization I grew up with would act the way they have.

Today I sent a fax to Katie Couric at CBS.  The text is below:

August 4, 2008

Katie Couric, Managing Editor
CBS Television Network
524 West 57th Street
6th Floor
New York, NY 10019-2902

VIA FACSIMILE

Dear Ms. Couric,

It is with great dismay that I, a parent of a young child with autism, have watched the ongoing series on autism by Sharyl Attkisson. This series’s angle was illustrated in her interview with Dr. Healy, which was tainted by the unfounded statement, “There is a completely expressed concern that they don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people.” I feel a good journalist would have asked for Dr. Healy to support this statement. Given the stakes involved, that would be the minimum required before airing it.

I expect you will not be surprised that I also have concerns over the recent piece questioning the independence of vocal supporters of vaccines. In particular, the part discussing Dr. Paul Offit was lacking in facts and in real analysis of those facts .

A) The statement by Dr. Offit that a child can theoretically handle 10,000 vaccines at once was made, but with no discussion. This is often quoted out of context by Dr. Offit’s detractors, intended to create the impression that his views are somehow extreme. Nothing could be farther from the truth: the statement shows the minimal demands that vaccines make on the immune system, even that of a young infant. In fact, given the number of immunological challenges in the human environment, children do receive the equivalent of thousands of vaccines every day. Dr. Offit’s statement is also not a mere opinion: it is based on calculations he has performed and published in the peer reviewed literature. No one has published a paper showing this calculation to be false or exaggerated in any way.

Given that, I would ask that if CBS wishes to present this statement in the future, they either discuss it in context or, should CBS disagree with Dr. Offit’s analysis, present a reasoned discussion of why they disagree.

B) The statement that Dr. Offit holds an endowed chair joint with the University of Pennsylvania School of Medicine and the Children’s Hospital of Philidelphia (CHOP) was presented as a potential conflict of interest, because much of the funding for this chair came from Merck. (Unreported by Ms. Attkisson was the fact that CHOP supplied the rest of the endowment.) As stated, it implies that this is some form of a grant, giving Merck leverage over Dr. Offit. Those of us familiar with academia know that the opposite is true: the endowment is a gift to the University, not to the individual who holds the chair, and the donor (Merck in this case) retains no control over the disbursement of funds. The recipient of the chair is chosen in a competitive process. Thus, the holder of the chair is fully independent – both of any obligation to the donor and of the continuing obligation to cover one’s salary with research grants. Ms. Attkisson’s piece implied exactly the opposite.

C) It was noted that future royalties from Dr. Offit’s patents have been sold for $182 million. First, it is worth noting that Dr. Offit and his co-inventors do not “hold” the patents, but assigned the rights to their institutions: the Wistar Institute and the Children’s Hospital of Philadelphia. These are the groups which have negotiated the sale of future royalties. Second, it is worth noting that this sale of future royalties means that whatever statements Dr. Offit makes about vaccines can no longer have even the possible influence on his finances implied by the story.

I will not discount the fact that Dr. Offit likely has benefited financially from his efforts to produce a vaccine. Frankly, I hope he did. His vaccine saves lives throughout the world. But, the point for this discussion is that the value of these financial gains has already been determined.

Of note is the fact that no other patents or patent applications are published at present. His laboratory is closed down. Thus, there is no future vaccine which could present a possible conflict of interest for Dr. Offit.

Given these facts, what we have is a scientist who has over 25 years’ experience researching vaccines and infectious diseases, and has no financial conflicts of interest in the present or future. Isn’t this exactly what we want in a spokesperson?

This is a key point. The reason why Dr. Offit is being targeted in some quarters is that he has a book about to be published, “Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure.” Not only is it obvious that non-mainstream autism organizations like Generation Rescue would like to defuse the impact of this book before it hits, but leaders of the organization have baldly stated their plans to attempt to discredit Dr. Offit and the findings revealed in the book. The fact that Dr. Offit is willing to face their attacks, with no prospect of personal gain, bespeaks a purity of intent, not only in this venture, but also in his past statements about vaccines.

The recent incident whereby a fax from Lisa Randall of Voices For Vaccines was given within hours to Generation Rescue, an organization outside of CBS, begs the question: what is the connection between Ms. Attkisson or members of the CBS News staff and Generation Rescue? This is a serious question which I hope CBS News publicly addresses.

It also seems appropriate to ask in closing: Does Ms. Attkisson or other members of the CBS news staff involved with these stories have any conflicts of interest, real or potential, in discussing autism and/or vaccine injury? Again, I would hope that CBS News would publicly address this.

CBS made a highly unprofessional decision in sharing the fax from Ms. Randall with Generation Rescue, an organization which insults, smears and attempts to intimidate those with whom they disagree. This is unfortunate, because I would like to demonstrate the fact that I have no ties whatsoever to the pharmaceutical industry by giving my full identity. Instead, I will sign simply:

Sullivan
Autism Parent
LeftBrainRightBrain.co.uk
SullivansJourney@gmail.com

Misplaced anger, or, I'd be pretty annoyed with the PSC if I were a petitioner

3 Aug

Sharyl Attkisson has recently “discovered” what those of us who have been watching the Autism Omnibus closely have known for months: Hannah Poling is not the first person with autism or autistic symptoms who has had been compensated* in vaccine court (as evidenced by Neurodiversity.com and Arthur Allen)

(*note that Ms. Poling’s case is still on going and she hasn’t been “compensated” yet.)

That said, one of the comments on Ms. Attkisson’s blog struck me. I’ll pick a bit out here, from Tim Kasemodel:

Our Government has been good at sweeping things under the rug – but the rug is no longer big enough, and great reporters such as Sharyl Attkisson are beginning to look there.

Ah, let’s see. I’ll point out, though I can’t prove, that I found other cases in the vaccine court’s history involving autism/autistic symptoms within days of David Kirby breaking the Hannah Poling story. It wasn’t hard–the government has cleverly swept these cases “under the rug” by putting them on their server in plain sight. The Chief Special Master made statements in the press about previous cases. (I need to find a good link for that, I know). My guess is that Ms. Seidel found more by doing those clever searches that got her subpoenaed (since a “mere housewife” wouldn’t be able to do computer searches, or some such nonsense).

So, we’ve established (I hope) that these were not hidden or “swept under the rug.” Given that, would you like to guess my reaction on finding this? Anger. Annoyance. Disappointment.

Yep. I was pretty pissed off. At whom? The petitioner’s steering committee (PSC).

I bet that raises some eyebrows and has a few people thinking I’m making stuff up, but it’s the cold hard truth. It bothered me. Did no one in the vast number of lawyers preparing the petitioner’s case ever do a search through the vaccine court’s cases for the keywords “autism” or “autistic”?

It’s no surprise that I think the PSC doesn’t have a case. But, I think that since the Omnibus wasn’t dismissed, the petitioner’s deserve their day in court with good representation. Missing such a simple thing as the existance of related cases doesn’t make me feel like the PSC is as good as it could be.

Hence the title–I think he anger is misplaced. The government didn’t sweep this under the rug. The PSC (petitioner’s steering committee), the autism/vaccine “advocates”, journalists (or not? I’m still trying to work that one out) like David Kirby just dropped the ball.

The fact that Sharyl Attkisson can pass this off as “news” when Arthur Allen and Neurodiversity.com have covered the idea just goes to show that the people promoting the autism/vaccine link keep dropping the ball.

As AutismNewsBeat recently noted, CBS news has discovered that people get paid for work. Actually, they seem to be demonstrating that people get paid for other people’s work. Seriously, are Arthur Allen and Kathleen Seidel getting royalty checks on this story?

Sullivan
Nikolai Ivanovich Lobachevsky Endowed Chair
LBRB School of Journalism

Sharyl Attkisson is slowly catching up to Neurodiversity.com and Arthur Allen

2 Aug

Sharyl Attkisson has posted yet another in her series on vaccines in autism.

It’s the first time we know of that the government has “conceded” an autism case in vaccine court. But CBS News has learned the government has previously been court-ordered to pay on other vaccine injury cases in which a child ended up with damage including autism or autistic symptoms.

And then discusses the case involving a child with Tuberous Sclerosis (TS).

Sharyl Attkisson would do well to read (if she hasn’t already) the Neurodiversity.com blog where previous cases. In specific, the post “a not so hidden history“. One of the cases there, Suel v. HHS involves a child with TS and autistic symptoms. While the case Ms. Attkisson is discussing appears to be a different one (from 1986), it uses the same expert witness (Gomez).

Will Ms. Attkisson now “discover” the other cases of compensated vaccine injury involving people with autism or autistic symptoms?

Maybe in her extensive research she missed Arthur Allen’s piece on the same subject? He cleverly hid it under the title “Recent Vaccine-Autism Award Not the First“.

My irony meter goes to 11

2 Aug

This has been an amazing couple of weeks for irony in the autism world and not just from CBS. Just when I thought it was calming down, CBS News responds to Voices for Vaccines. As a recap–CBS news ran a short piece on potential conflicts of interest by groups and people who support vaccines (discussed AutismVox, Autism News Beat, LeftBrainRightBrain, Orac, . V4V called defamatory the Sheryl Attkisson piece.

Well, CBS news has responded…to an Orange County blogger. (presumably, a version of this was sent to V4V as well). (It’s worth noting that the Orange County blogger, not being satisfied with the mistakes that CBS had made, pushed the limits of misinterpretation a tad further–see the comments here)

Our report last Friday represents one part of the extensive reporting CBS News has done, and will continue to do, on the issues surrounding vaccines and possible links to autism. That continuing coverage has repeatedly reported on the critical importance of the nation’s maintaining a robust vaccination program for children. Reporting on what critics, including members of Congress, believe to be potential conflicts of interest for vaccine advocates who receive funding from vaccine makers is also an entirely legitimate aspect of our overall coverage. We believe our report was in no way defamatory of any institution or individual, and that no retraction is warranted.

Oh, kay. CBS decided internally that they had acted properly in their piece.

This is of course being trumpeted in the usual quarters. Let’s say we did a cut and paste, switching, say, CBS for CDC? That’s right, shouts of “Conflict of Interest” would echo the virtual halls of the blogosphere.

But apparantly no conflict of interest in CBS deciding that CBS acted appropriately.

This didn’t peg the Irony Meter 2000 (which goes to 11). But, it is amusing.

I don’t know the legal term for a news piece that reports inaccurate information, and other information in a leading way due to lack of analysis. That part is not amusing. The days of Walter Cronkite are long gone, I’m afraid.

Yet another look at CBS's view of Offit's COI's

2 Aug

Paul Offit has been much in the news and blogOsphere lately (Say, here , here and here. Dr. Offit is a vaccine researcher and vocal supporter of vaccines. This makes him a target amongst some groups, leading to a recent example of the “investigative reporting” that CBS news’ Sheryl Attkisson brings to the public.

A big question comes up as to Dr. Offit’s conflicts of interest. Ms. Attkisson’s story brings up a few. Let’s take a look. First we have the fact that Dr. Offit holds an endowed chair:

Offit holds in a $1.5 million dollar research chair at Children’s Hospital, funded by Merck. He holds the patent on an anti-diarrhea vaccine he developed with Merck, Rotateq, which has prevented thousands of hospitalizations.

OK, simple fact check: the endowed chair is $2M, with $500,000 seed money put in by Children’s Hospital of Philidelphia and the University of Pennsylvania.

Not many people have reason to know the details of what an endowed chair is. If I didn’t know better, the above quote makes it sound like the $1.5M from Merck is something akin to a grant, giving Merck some leverage on Dr. Offit. Actually, chair endowments are basically trust funds. In this case, Merck donated $1.5M to CHOP and Penn, who manage the money independent of Merck. These institutions use the proceeds of the endowment to pay for salary and research funds for the chair holder. CHOP and Penn decide who get the chair after Dr. Offit leaves or retires. It is not “His” chair, but the institutions’.

Remember that bit about “research funds”? This is money that allows a the chair holder (Dr. Offit in this case) to do independent research. He doesn’t have to apply for grants, but has a constant supply of money. Merck doesn’t have a say in how he spends those funds.

Isn’t that a good thing? Independent researchers, not beholden to funding agencies?

So, the endowed chair is not a conflict of interest at all.

What other conflict of interest did Ms. Attkisson “unearth”? Well, she noted in the above quote that Dr. Offit is a co-inventor of a patent on a Rotavirus vaccine. She goes on to state:

And future royalties for the vaccine were just sold for $182 million cash. Dr. Offit’s share of vaccine profits? Unknown.

OK, I am going to be picky on details again. Yep, I make a lot of mistakes too, but I gotta get this one out. Dr. Offit doesn’t “hold” a patent on the vaccine. He is an “inventor”. He “assigned” the rights to:

The Wistar Institute of Anatomy and Biology, Philadelphia, PA
The Children’s Hospital of Philadelphia, Philadelphia, PA

I’ll also point out that he is listed as an inventor on about 24 patents worldwide, with about 10 on Rotavirus. Of those, there are multiple US Patents. (I’ll note that Dr. Offit does not list all his patents on his resume.)

I’m sure I’ve made the “holds patent” mistake a lot. I would venture to guess that you might even find the mistake in statements by Dr. Offit. In general, I wouldn’t think “holds patent” is a big deal. He may discuss it as “his” patent because the ideas are “his” and his co-inventors. But, in the financial sense, the patent belongs to the assignee. Initially, this was CHOP and the Wistar Institute. So, why bring it up here? Because, (a) a news reporter should be more accurate and (b) I think the language is important in this specific case.

What Dr. Offit (and his co-inventors) proabably [edit–no probably about it, hat-tip to Scwhartz for catching this] “hold” is an agreement with the assignees (CHOP and the Wistar Institute) for some share of license fees or for bonuses based on the successful licensing of the patent.

That’s how research works. The company or institution takes the risks that a researcher’s work will never pan out. They pay salary, they pay the fees to file patents. Typically, researchers’ shares in license fees are determined before research is completed, often when the researcher is hired.

But, that doesn’t sound as interesting as “He holds a patent licensed for $182 million”, does it?

I’m not going to downplay the likelihood that Dr. Offit made money off of the vaccine patents. I hope he did. But, if he were in it for the money, there were a lot of things he could have done to make more in his career once it became obvious that RotaTeq was likely to succeed. Talking about the lack of science behind the autism/vaccine connection isn’t one of them.

And that’s what this is all about, isn’t it? The implication that Dr. Offit is out for the money. People want to make the public think that he speaks out on vaccine safety because he will get more money.

Well, recall that the future royalties on RotaTeq have been sold. What does that tell us about Dr. Offit’s conflicts of interest? It tells us that the financial COI on RotaTeq is basically over!

Consider the world view of those who claim that Dr. Offit speaks out on vaccine safety to line his own pockets. How much money will Dr. Offit make on RotaTeq if he speaks out on autism issues? How much will he make on RotaTeq if he stops speaking out?

They are the same amount.

So, CBS had two potential COI’s on Dr. Offit: the endowed chair and the RotaTeq royalties. Neither of which is an active COI at this time and into the future.

So, what’s missing from the CBS example of “investigative journalism”? How about a discussion of Dr. Offit’s research grants? Where did the money come to support the research into the vaccine? We all know that CBS must have looked into that. Why nothing in the story? Could it be that there is no story there? Uh huh. The National Institutes of Health funded Dr. Offit’s research on rotavirus. Merck took over the development and testing phase of the vaccine in 1991, but the actual creation of the vaccine occurred without industry funding.

So, did Merck do “payback” and fund Dr. Offit’s research since then? (Again, CBS had to have considered that). Not that I can see. No Merck funded projects are listed in his resume with him as principal investigator.

Quite frankly, I am surprised by how few industry funded research projects Dr. Offit has been principal investigator on. Given his expertise, I would have expected much more industry funding. Much more.

That doesn’t make a good story though, does it?

So, how does Dr. Offit act when a COI is in play? Oddly, this discussion recently occurred on this blog.

Dr. Offit was a member of the Advisory Committee on Immunization Practices (ACIP), Centers for Disease Control and Prevention from 1998 to 2003. During this time he had to vote on a competitor’s rotavirus vaccine (RotaShield). (People seem to have a habit of confusing RotaShield with Dr. Offit (and team’s) RotaTeq)

So, when RotaShield, the competitor’s vaccine, came up for vote, what Did Dr. Offit say? He voted to include it in the schedule. It’s hard to spin that as something that would benefit Dr. Offit, as it clearly meant that the marketability of his own vaccine was reduced.

Rotashield was found to potentially cause intussusception. The numbers affected were too small to detect in the trial, so this concern was raised after the vaccine was added to the schedule. the ACIP took a vote on whether to remove RotaShield from the schedule–a move that clearly had potential benefits for Dr. Offit, so he abstained.

I guess that didn’t fit in the CBS story either.

Why are we talking about Dr. Offit again? We can all speculate, but the good folks at the Age of Autism answer the question for us:

Paul Offit is quickly coming under suspicion for his pharma ties and losing his usefulness as a vaccine promoter in the press.
It’s a little hard to pretend that all you do is work at Children’s Hosp. of Philadelphia, when you’ve gotten coverage on CBS and in the
Wall Street Journal because of serious conflicts of interest. Offit’s new book,
“Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure,” is due out this fall but I hardly think anyone will think of him as a credible independent expert.

Anne Dachel
Media editor

Yep, they realize that “Autism’s False Prophets” is soon to hit the shelves of bookstores. I wish I had a copy now, as it must be pretty scary to the Generation Rescue crowd since they are putting on such a big preemptive strike.

I’ve already asked my library to order a copy.

By the way, I love how everyone at Age of Autism is an editor

Sullivan
LeftBrain/RightBrain Antarctic Bureau, Sports Desk.

Stop the presses: Paul Offit's resume is WRONG!

1 Aug

If you check Dr. Offit’s resume, you will find that he list three patents:

Clark, HF., Offit, P., Plotkin, S.A. Rotavirus reassortant vaccine. United States Patent #5,626,851. Issued May 6, 1998.

Speaker, T.J., Clark, H.F., Moser, C.A., Offit, P.A., Campos, M., Frenchick. P.J. Aqueous-based encapsulation of a bovine herpes virus type-1 subunit vaccine. United States Patent #6,270,800. Issued August 7, 2001.

Clark HF, Speaker, T.J., Offit, P.A. Aqueous solvent encapsulation method, apparatus and microcapsules. United States Patent number 6,531,156. Issued March 11, 2003.

In preparing a post, I found that the above is not accurate. I feel I must note the mistakes. Yes, there are multiple mistakes. If you do a patent search for “vaccine” with “Offit” as the inventor, you get 24 patents and applications. I list them below:

ES2216242T3 ENCAPSULACION DE VACUNA SUBUNITARIA CONTRA EL VIRUS DEL HERPES BOVINO TIPO 1 EN BASE A UN DISOLVENTE ACUOSO.

PT0873752T ENCAPSULACAO COM BASE EM SOLVENTE AQUOSO DE UMA VACINA DE UMA SUBUNIDADE DO VIRUS DO HERPES BOVINO DE TIPO-1

DK0873752T3 Vandigt oplesningsmiddel-baseret indkapsling af vaccine af en bovint herpesvirus type-1-underenhed

EP0873752B1 Aqueous solvent based encapsulation of a bovine herpes virus type-1 subunit vaccine

US6531156 Aqueous solven encapsulation method, apparatus and microcapsules

CA2065847C ROTAVIRUS REASSORTANT VACCINE

US6290968 Rotavirus reassortant vaccine

US6270800 Aqueous solvent based encapsulation of a bovine herpes virus type-1 subunit vaccine

EP0873752A3 Aqueous solvent based encapsulation of a bovine herpes virus type-1 subunit vaccine

US6113910 Rotavirus reassortant vaccine

AU0713639B2 AQUEOUS SOLVENT BASED ENCAPSULATION OF A BOVINE HERPES VIRUS TYPE-1 SUBUNIT VACCINE

ZA9803327A AQUEOUS SOLVENT BASED ENCAPSULATION OF A BOVINE HERPES VIRUS TYPE-1 SUBUNIT VACCINE.

DK0493575T3 Vaccine af reassortant rotavirus

JP10316586A2 CAPSULATION OF BOVINE HERPES VIRUS TYPE-1 SUBUNIT VACCINE ON BASIS OF AQUEOUS SOLVENT

NZ0330251A BOVINE HERPES VIRUS TYPE-1 (BHV-1) SUBUNIT VACCINE IN AN AQUEOUS SOLVENT BASED ENCAPSULATION

AU6351198A1 AQUEOUS SOLVENT BASED ENCAPSULATION OF A BOVINE HERPES VIRUS TYPE-1 SUBUNIT VACCINE

EP0873752A2 Aqueous solvent based encapsulation of a bovine herpes virus type-1 subunit vaccine
CA2229430AA AQUEOUS SOLVENT BASED ENCAPSULATION OF BOVINE HERPES VIRUS TYPE-1 SUBUNIT VACCINE

EP0493575B1 ROTAVIRUS REASSORTANT VACCINE

US5750109 Rotavirus reassortant vaccine

US5626851 Rotavirus reassortant vaccine

GR3018262T3 Rotavirus reassortant vaccine.

EP0323708B1 Rotavirus reassortant vaccine

EP0493575A4 ROTAVIRUS REASSORTANT VACCINE

Why would someone leave all those patents off of a resume? A lot of these patents are international versions of US patents (Note the first two letters in each patent number US=United States, EP=European Patent, GR=Great Britain, etc.). Some of the US patents are “picture patents”. They are non-obvious variations, but similar to other, more fundamental patents.

Oh, yeah. There was another mistake. He lists patent #5,626,851 as Issued May 6, 1998. Actually, it was issued May 6, 1997. Obviously a part of some plot. I can’t tell how exactly it benefits him, but it must somehow. Just like the fact that he left patents off his resume, must be a plot. Nefarious.

Well, curiosity got the best of me. I emailed Dr. Offit to ask why these are missing from his resume. He responded that yes, indeed, they are “picture patents”, and that including them all seemed like resume padding.

There is a saying amongst old timers (in any field): “I’ve forgotten more about this subject than you will even know”. It appears that Dr. Offit has left more pertinent qualifications off his resume than his detractors (combined) will ever have.

How many of us have resumes so good that we can leave off 21 patents and cherry pick the really fundamental ones? How many of us can only list the invited talks we’ve given in the recent past (as Dr. Offit does)?

CBS news: can I have a job? I’ve “unearthed” more than you did. Oh, but it doesn’t fit with the “conflict of interest” theme, does it?

Sharyl Attkisson's long history of anti-vaccinationism

1 Aug

As blogged by Mike, Liz, Autism News Beat, Kristina and Orac, CBS reporter Sharyl Attkisson seems to the prime suspect in the matter of how a fax sent to CBS News by Voices for Vaccines turned up on the Age of Autism blog less than 1 day later.

This matters. Reporters are supposed to be independent. They are supposed to give a balanced view. The very act of forwarding this fax to Age of Autism simply confirms that someone at CBS News, mostly likely Ms Attkisson, is deeply affiliated with Age of Autism. This makes her conflicted and she is totally the wrong person to be investigating the autism/vaccine hypothesis.

I went looking to see what else I could find to support my opinion that Ms Attkisson is someone who is not a reporter, but someone presenting her opinion in the name of investigative news. I found plenty.

Take this ‘interview‘ with Rep. Dave Weldon about the Poling case. I put the word interview in single quotes because it really isn’t an interview, its more a series of questions to allow Weldon to trot out a series of inaccuracies supportive of the idea vaccines cause autism. This is the sort of journalist who would ask God ‘tell me God, do you believe in creationism?’ And then give God a five minute run to explain how he does.

She was also the CBS employee (it seems wrong to keep saying she is a reporter) who interviewed Bernadine Healy in which the former Philip Morris shill said we should re-examine the autism/vaccine idea.

Over on the ‘No Mercury’ website, there is a long list of videos of Ms Attkisson (35 in total, dating back to March 2002) of which all seem to be ‘investigations’ into vaccines and other pharma related activities.

This piece which relates some of the most common and mind-numbingly stupid antivax canards around is just about the clearest indication of her loyalties. Anyone who states the following is not impartial and should not be investigating this story:

Non-profits which dispel any vaccine/autism/ADD link have ties to vaccine makers.

How the Hidden Horde were hidden

1 Aug

One of the (many) controversies within the autism community is the question of the hidden horde. The basic argument is:

1) Autism diagnosis have ‘increased’ massively in recent years. Prevalence now stands in the UK at approx1 in 100 and approx 1 in 150 in the US.

2) Something(s) must have caused this large scale increase.

This is where the division point is. Devotee’s of the ‘autism is vaccines/TV/mobile phones/whatever’ ideas say that the increase is not in diagnosis but in autism itself. That there really is a massive increase since the early 90’s in the amount of autistic people. They call this ‘the epidemic’.

People like me think that there may be a small ‘real’ increase but it is very small and what we are seeing is the effect of (to quote an authority on the subject):

The shift in how we view autism….is part of a broader set of shifts taking place in society.

…..

Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools….which first started using the category of autism during the 1991 – 1992 school year are reporting it more often….Epidemiologists are also counting it better.

…..

Still, these rates may not be proof of an epidemic. Why? Because the old rates were either inaccurate….or based on different definitions of autism than the ones we use now.

Interestingly, in the Autism Omnibus hearings, the families are now arguing (after years of ‘epidemic’ talk) that the amount of children allegedly poisoned by vaccines is so small as to be undetectable. Hardly a hallmark of an epidemic.

One of the arguments used by people who believe there has been an epidemic of autism is to say ‘if there has _not_ been an epidemic, then where are all the adult autistics?’ meaning that if the rate of autism has always been 1 in 100 or 1 in 150 then there should be an equal number of adult autistic people to children.

Its a logical thought but it doesn’t take into account one crucial fact; as far as I know, *no* epidemiological study has tried to count the adult autistic population in any country. So we have no real idea how many adult autistic people there are.

We have some clues – such as the 2004 Scottish audit that revealed that 45% of local authorities in Scotland considered adult prevalence grossly underestimated. For example, Perth and Kinross commented:

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.

And this year, the UK Gvmt announced the would be undertaking the first ever audit of autistic adults in England.

But we do have the odd clue thrown to us now and again that shows where the so-called Hidden Horde might be. As the Scottish Audit suggests, they live amongst us, unrecognised or wrongly diagnosed.

Two recent studies from the Netherlands have shed a bit more light on what may be happening with adults.

In ‘Autistic Spectrum Disorders in Adults‘, the abstract states:

The expression of impairments in social interaction, communication, imagination and mental flexibility changes during development into adulthood.

Autism spectrum disorders in adults may mimic, or be overshadowed by, other psychiatric disorders.

Almost a direct agreement with the Perth and Kinross statement from the Scottish Audit.

The second paper ‘Recognition of autism spectrum disorders in adults‘ has an Abstract worth quoting in full;

Autism spectrum disorder was diagnosed in three adults. The first patient, a married man aged 41, was referred to a psychiatrist with ‘impending burn-out’. The second was a 32-year-old male student with schizophrenia and a depressive disorder who was referred to a centre for autism because a friend of his mother’s knew someone with Asperger’s syndrome. The third patient was a 25-year-old woman with a ‘fixation on food’ who was referred by her general practitioner to a psychiatrist for evaluation of longstanding use of antidepressant medication. Autism used to be thought of as a condition of childhood. Only recently has the diagnosis and treatment of autism spectrum disorders become the focus of attention in adult psychiatry. It is made all the more difficult as during development into adulthood, the expression of disorders of reciprocal social interaction, communication, imagination and repetitive stereotypical thinking and actions, change.

This again shows how autism can be ‘masked’ and how diagnostic tests suitable for children may not be suitable for adults. It also touched on another key issue – that only recently have adults begun to be looked at. It also thirdly touched on another issue – comorbidity. All these three people had ‘other’ psychiatric issues. I have no idea if their diagnosticians considered their autism to be comorbid or if their other diagnoses were considered comorbid to their autism. In the end it doesn’t really matter, except in one important regard: By failing to help these people properly when they were children, did their other psychiatric issues grow so pronounced that their autism was ‘eclipsed’ until a suitable diagnostic test was undertaken? If that is the case then we need to be very aware that there is indeed a large population of adults who have not got a full and proper diagnosis and thus are missing out on help they need and deserve.

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