My “hostile” or “threatening” messages to the Age of Autism editors

23 Dec

I’m critical of the Age of Autism blog and their so called “editors”. That comes as no news to anyone who has read this blog, I’m sure. But I found an odd bit in David N. Brown’s recent piece, Paul Offit’s Mythical Millions (v. 2), when he noted that Mr. Mark Blaxill and Mr. Dan Olmsted wrote in a recent Age of Autism piece:

Most notably, we have received hostile (and in one case threatening) messages from readers who take issue with our estimates

I sent email messages to Mr. Blaxill and Mr. Olmsted, pointing out their mistakes. Hostile and threatening were not the way I would characterize the emails, so I emailed Mr. Blaxill and Mr. Olmsted with my request for clarification of their comments. They have not responded, which I am taking as confirmation that they considered my communications “hostile” and/or “threatening”. I thought I would let the readers decide whether based on the actual messages below.

As a bit of a backstory, Mr. Olmsted and Mr. Blaxill wrote a piece where they estimated the amount of money Dr. Paul Offit earned from his share of his vaccine patents. In this piece, they made a number of errors. I pointed out some of the errors, errors that were easily confirmed with publicly available information, via email.

I thought I had phrased this in a non “threatening” and non “hostile” manner. Again, I leave it to you, the reader, to decide.

Here is my initial letter to Mark Blaxill and Dan Olmsted, editors at the Age of Autism blog.

Mr. Olmsted, Mr. Blaxill,

I am sure you are interested in accuracy whenever possible in your blog posts. I assume you want to know and want to correct errors.

In a recent post of yours, you estimated the royalty payment for Dr. Paul Offit from CHOP’s sale of it’s rights to the rotavirus vaccine Dr. Offit, Dr. Plotkin and Dr. Clark invented.

Your post makes an estimate that is markedly higher than the real number. This is in large part to two errors you made.

First, the Patent and Intellectual Property Policy you used is incorrect. You rightly note that this is a new policy and that the rotavirus patent was likely covered by a previous policy.

The details of the previous policy are included in this document (http://stokes.chop.edu/forms/btob/Jan07BtoB.pdf) , which can be easily found with the following google search:

Patent and Intellectual Property Policy site:chop.edu

Using the older policy and the $182M reported as the payment CHOP received for their patent, you can calculate an inventors share of $18,550,000.

The second mistake in your estimation is in assuming that Dr. Plotkin and Dr. Clark. did not share in the CHOP inventor share. This is incorrect. Again, a quick google search will demonstrate that Dr. Plotkin and Dr. Clark were, indeed, CHOP faculty. Therefore, the $18,550,000 is divided by 3, resulting in an inventor share of $6,183,333.

The CHOP 2006 annual report (http://stokes.chop.edu/publications/annual_report/pdf/annual_report_2006.pdf page 42) clearly states that Dr. Plotkin and Dr. Plotkin were part of the CHOP team that invented the vaccine. Other pages on the CHOP site note that Doctors Plotkin and Clark were, indeed, faculty there.

I have already emailed Dr. Offit to check that this is an accurate representation of the facts, and he confirmed this.

I look forward to seeing how you make use of these corrections.

Mr. Blaxill reponds:

Dear Sullivan,

Please identify yourself. I do not respond to unsigned communications.

Sincerely,

Mark Blaxill

Sullivan:

Mr. Blaxill,

I realize that this is your policy and I respect that. I apologize for contacting you like this, but I felt it important that you have accurate information in this case. The links I supplied confirm this. That information is independent of whether I sign or do not sign my email.

I believe your mistake to be an honest one. At the same time I believe it was easily avoided as accurate information is readily and publicly available. Note that I made a conservative estimate, using the full $182M of the Royalty Pharma payment, not the $153M you report as net income from CHOP’s sale.

I respect your policy and I was not and am not looking for a response. I do hope that you will act on the information provided.

Mr. Blaxill:

Dear “Sullivan”,

Your information is interesting but equivocal. I have information that goes in the other direction. More to the point, we asked both Offit and CHOP to comment on the story before publication and they declined. The only definitive way to resolve the ambiguity is full disclosure of the amounts Offit received from all sources and he has declined to do so. So we have no plans at the moment to act on this or any other new information, which at the most amounts to a distinction without a difference. The conclusion stands: Rotateq made Offit a millionaire.

In the meantime, you continue to hide behind an anonymous email address. You must understand that discredits you as a source.

Sincerely,

Mark Blaxill

Sullivan

Dr. Offit has publicly stated how much he was paid by CHOP.

http://counteringageofautism.blogspot.com/2009/09/paul-offit-explains-money-side-of.html

A blogger contacted Dr. Offit and Dr. Offit responded. The blogger (David N. Brown) used his real name in reporting the information. No different than had he responded to you and you had included that information in your blog under your name.

Were you both unaware of that blog and that post?

Will you make the correction now?

Mr. Olmsted and Mr. Blaxill did not make the correction. The recently admitted their mistakes, but have yet to make the correction.

Upon reading the comment that they had received “hostile” and “threatening” responses, I decided to inquire as to whether they were referring to the exchange above. Below is my final email in this exchange.

Mr. Olmsted, Mr. Blaxill:

In reading David Brown’s discussion of your recent blog post on Dr Offit, I found this comment: ” Most notably, we have received hostile (and in one case threatening) messages from readers who take issue with our estimates. ”

I would like to know if you include this exchange as either hostile or threatening.

I thank you for your time.

This has remained unanswered. I take this as a strong indication that, yes, they considered my discussion “hostile” or “threatening”.

Frankly, I believe either clarification or an apology are in order from Mr. Blaxill and Mr. Olmsted as the above discussion was quite respectful. Do I expect that? No. I don’t expect such behavior from people who would write the passage below:

“The only definitive way to resolve the ambiguity is full disclosure of the amounts Offit received from all sources and he has declined to do so. So we have no plans at the moment to act on this or any other new information, which at the most amounts to a distinction without a difference. “

The message was clear to me: the blog post would remain uncorrected unless Dr. Offit met their demands. The fact that Mr. Olmsted and Mr. Blaxill were clearly mistaken had no bearing on whether the piece would remain. Note that even though they have admitted their mistake, no mention is made in their original post to this day.

I started the above communication with the assumption that Mr. Blaxill and Mr. Olmsted were honorable people who, while we disagree, would put accuracy above smear.

I am willing to admit my mistake.

47 Responses to “My “hostile” or “threatening” messages to the Age of Autism editors”

  1. kwombles December 23, 2009 at 23:42 #

    I ran David Brown’s rebuttal of the Blaxill and Olmsted’s piece at http://counteringageofautism.blogspot.com/2009/12/revenge-of-offit-revisited-dan-olmsteds.html.

    David’s website has a page dedicated to Olmsted’s difficulties with math. David’s done some tremendous work running down the information and figuring out where and how three of the folks at AoA manage to get things consistently wrong.

    I have the sense that any contact that is not sycophantic is regarded as threatening and hostile. 🙂

  2. Socrates December 24, 2009 at 00:46 #

    I started the above communication with the assumption that Mr. Blaxill and Mr. Olmsted were honorable people who

    Sullivan,

    May I ask in all seriousness, what was your evidence base for this assumption.

  3. Science Mom December 24, 2009 at 01:15 #

    “The only definitive way to resolve the ambiguity is full disclosure of the amounts Offit received from all sources and he has declined to do so. So we have no plans at the moment to act on this or any other new information, which at the most amounts to a distinction without a difference. “

    Translation: “If Dr. Offit won’t talk to us, we’ll just make stuff up and even if he responds, we’ll just keep making stuff up”.

    I guess they use the same metric for ‘hostile’ and ‘threatening’ as Jake Crosby uses for ‘intimidation’ and that AoA contributors use for torturing science. It’s like an alternate lexicon reality there.

  4. Jake Crosby December 24, 2009 at 02:08 #

    Right, “Science” Mom, Katie Miller talking about how stigmatized she feels to tell the whole IACC meeting that autism doesn’t kill people is entirely reasonable and rational.

    After all, who are all those parents of children with no awareness of danger, who bang their heads, and self-mutilate, to question Alex Plank’s girlfriend?

  5. FreeSpeaker December 24, 2009 at 02:48 #

    Firstly, Blaxill and Olmsted define questioning their accuracy as hostile and threatening. Neither like being challenged or being shown that they are wrong. If you visit the AoA Collective, and attempt to post this same message, they will censor it.

    They need a bogeyman, and Paul Offitt is the perfect one for them. He is inherently evil to these “people” because he is clearly smarter than they are, and he had the nerve to make money using his smarts. It is a form of class envy.

    ““The only definitive way to resolve the ambiguity is full disclosure of the amounts Offit received from all sources and he has declined to do so. So we have no plans at the moment to act on this or any other new information, which at the most amounts to a distinction without a difference. “

    This is EXTORTION, pure and simple. They do not have facts to support their position. Instead, they obfuscate with this type of personal attack.

  6. Dedj December 24, 2009 at 03:11 #

    I don’t think it amounts to extortion, which I understand has a set legal definition.

    It does however, look to be egocentric and logically dodgy.

    Even IF Offit was contractually free to reveal his exact earnings, the amount of effort it would take to collate all that data would significantly outmatch the value of changing Blaxsteds opinions.

  7. A friend December 24, 2009 at 03:24 #

    Sullivan, When AoA is caught in a lie, they won’t respond to you even if you give them your name. I tried.

  8. Tom December 24, 2009 at 12:11 #

    I find it somewhat amusing that an intellectual property expert can’t seem to accurately calculate royalties.

    • Sullivan December 24, 2009 at 18:42 #

      I find it somewhat amusing that an intellectual property expert can’t seem to accurately calculate royalties.

      And he still has it wrong.

      His recent post was filled with blame shifting. He managed to make his readership believe it was Dr. Offit’s fault that he (Mark Blaxill) made so many mistakes in his first calculation. It took me a very short time to come up with the accurate number, using publicly available information. But, somehow it was a great plot by Dr. Offit to misinform the world.

      It’s the end of the year, when annual reviews are submitted. Those who have actually accomplished something submit their achievements. Those who screwed up try to shift blame and make their mistakes look like accomplishments. Mark Blaxill (intellectual property specialist) and Dan Olmsted (de facto journalist) didn’t have a good year.

  9. Visitor December 24, 2009 at 12:36 #

    I may sound like a cracked record over all this, but, to tell you the truth, Sullivan, I can’t see the point of these kind of exchanges. By all means, a post on the true position about Paul Offit is great, especially if it points to factual material and so forth.

    But LB/RB stands in its own right – in large measure to your work and insights – and needn’t exist even for one minute in reference to that billious hatefest AoA. IMO, it’s run by a handful of calculating liars, and it’s sustained with the misery of some of most bitter and ignorant people you’ll find on the web.

    IMO, to write to these people, to link LB/RB to their site, and to invest a whole lot of time and emotional energy in the ding-dong that inevitably ensues gets you nowhere, and IMO may well be harmful. Certainly, it increases their influence and bleeds your energy.

    These people feed off your emotions. Your distress satisfies them. You are giving them something they want.

    • Sullivan December 24, 2009 at 18:36 #

      I may sound like a cracked record over all this, but, to tell you the truth, Sullivan, I can’t see the point of these kind of exchanges. By all means, a post on the true position about Paul Offit is great, especially if it points to factual material and so forth.

      I sincerely appreciate your input, and I agree. I try to break myself of responding to AoA. I’ve said it before, I could make a full time blogging career out of debunking their daily output of misinformation.

      Mark Blaxill recently made a comment that was very telling. I am paraphrasing here, but he said that anything that angers the wackosphere (i.e. blogs like this) is a good thing. One could easily say that he is sitting back laughing childishly at having made me rise to his bait.

      I would counter that in this instance, the post serves a real purpose. Mr. Blaxill has been leading a movement on his blog to paint his opposition as extreme. They recognize that the extremist actions of their own membership, such as threatening the life of Paul Offit and his children, is quite damaging to their reputation. Rather than repair that damage, they seek to make it seem as though they are not alone.

      The above exchange demonstrates clearly that Mr. Blaxill will reach pretty deep to find anything that he can use as an example of “hostile” and “threatening”. Compare the above exchange to Dr. Offit being physically assaulted outside the CDC. Compare it to threats deemed credible enough to warrant armed protection. Dr. Offit is not the only person to require such defense. I know of others who have had threats deemed credible enough that security (even FBI) was provided.

      Mr. Blaxill’s blog inflames his readership, and yet he deflects responsibility for the result. I find his behavior irresponsible.

  10. Dedj December 24, 2009 at 14:02 #

    “Right, “Science” Mom, Katie Miller talking about how stigmatized she feels to tell the whole IACC meeting that autism doesn’t kill people is entirely reasonable and rational.”

    Uh, yes it was actually. Autism doesn’t kill people. Situations that autistic people can find themselves in can kill, but not autism itself. You will reference a proper source (i.e. not the personal opinion of a dentist) that says otherwise.

    You really do need to learn that things aren’t what you claim them to be simply because you say so.

    You did not give adequate reasons for your interpretation of her words the last time you made accusations against her.

  11. Skepticat December 24, 2009 at 14:53 #

    Nothing surprises me about AoA. I occasionally commented there and was never rude or abusive but my comments were never published. One day, after reading one particularly stupid post, I just wrote, “you’re all nuts”. Naturally that was the one comment of mine they published. LOL!

  12. kwombles December 24, 2009 at 16:42 #

    http://interverbal.blogspot.com/2008/02/mark-blaxill-and-looking-at-data.html

    Blaxill shows a history for not acting like a gentleman.

  13. FreeSpeaker December 24, 2009 at 18:42 #

    Extortion is discussed here: http://www.google.com/search?hl=en&defl=en&q=define:extortion&ei=naYzS63KAcralAevtOGlBw&sa=X&oi=glossary_definition&ct=title&ved=0CAoQkAE

    In essence, it is the coercion by one person of another to perform some act that they are not legally bound to do. Here, with Blaxill & Olmsted, the extortion is to force Paul Offitt to respond to them directly, or they will not correct their lies about him. I call this intellectual extortion, although applying the word “intellectual” to anything that Balxill and Olmsted do makes me want to barf.

  14. Kev December 24, 2009 at 19:37 #

    A Visitor,

    It rankles every time we talk about AoA you’re right. But I feel we must. They need to be dragged out and have the bright light of truth and accuracy shone on their dealings.

  15. FreeSpeaker December 25, 2009 at 01:23 #

    I have to agree with Kev, the brighter the light, from as many directions as possible, is the only way to handle the AoA collective. kwombles, LB/RB, RI, and everyone else, must keep up the intellectual pressure on them. AoA will respond, and make fools of themselves as they have done here.

  16. Science Mom December 25, 2009 at 02:25 #

    Right, “Science” Mom, Katie Miller talking about how stigmatized she feels to tell the whole IACC meeting that autism doesn’t kill people is entirely reasonable and rational.

    After all, who are all those parents of children with no awareness of danger, who bang their heads, and self-mutilate, to question Alex Plank’s girlfriend?

    No, it’s just Science Mom. I know Katie is a girl and all but you still haven’t provided any substantiation for characterising her statement as intimidating, your red herring, notwithstanding.

  17. Jake Crosby December 25, 2009 at 03:53 #

    You know “Science” Mom, you are really one to talk about red herrings when you completely avoided what I said. Katie Miller, being very high-functioning herself and having been the girlfriend of the founder of the biggest online forum for people on the spectrum, is not exactly put in any immediate danger by her ASD. She has no right to bark at the IACC that autism does not kill people when those with more severe cases have lowered life expectancies as a result of their autism.

  18. David N. Andrews M. Ed., C. P. S. E. December 25, 2009 at 10:15 #

    “Autism doesn’t kill people. Situations that autistic people can find themselves in can kill, but not autism itself.”

    You know, dedj, I would have thought that this was such a painfully obvious fact that we wouldn’t actually have to tell it to anybody.

  19. Mike Stanton December 26, 2009 at 00:49 #

    So Blaxill responds to your pseudonymous email to tell you

    “Please identify yourself. I do not respond to unsigned communications.”

    Then he responds again to another pseudonymous email from yourself in contradiction of the above statement. Obviously he is a man of his word. The only question is which word?

  20. Dedj December 27, 2009 at 20:47 #

    “She has no right to bark at the IACC that autism does not kill people when those with more severe cases have lowered life expectancies as a result of their autism.”

    Uh, except she was allowed in to give her opinion at least twice. She has had her ‘right’ validated twice at least.

    I’m still waiting for that reference for your intial arguement by the way.

    As it appears you cannot tell the difference between ‘autism kills’ and ‘people with autism tend to die earlier’ then I don’t hold much hope for you.

    • Sullivan December 28, 2009 at 06:28 #

      Dedj,

      hate to tell you but Jake Crosby got you to do one thing he wanted–quote his idea that Kate Miller “barked” at the IACC.

      The video of Ms. Miller shows a very respectful person making a very respectful presentation to the IACC. Jake Crosby (as one of the self-styled “editors” of the Age of Autism blog) is responsible, as an editor, for content such as the failed “baby eating” post, misquotes of IACC members and outright harassment of IACC members. But, he characterizes a calm presentation as “barking”. One wonders if he buys into the misinformation he is spreading.

  21. FreeSpeaker December 28, 2009 at 16:17 #

    After having read many of Jake-the-Flakes posts, there can be little doubt that he has drank the AoA Collective Kool Aid. He, like the rest of the drones, needs to find a way to dicredit the person, since he is not smart enough to engage in intelligent discussion.

  22. Dedj December 28, 2009 at 18:20 #

    “One wonders if he buys into the misinformation he is spreading”

    Given how much he had to be pushed to state which part of the talk it was that he actually disagreed with, and how hard he avoided giving a direct answer, one would have to question whether he actually knew what she said or just relied on someone telling him second hand.

    Sometimes we have to rely on second hand sources, but when it’s this easy to double check what she actually said there’s no excuse.

  23. Natasa December 29, 2009 at 23:02 #

    Autism. 2008 Jul;12(4):403-14.

    Mortality and causes of death in autism spectrum disorders: an update.

    Mouridsen SE, Brønnum-Hansen H, Rich B, Isager T. Department of Child and Adolescent Psychiatry, Bispebjerg University Hospital, Copenhagen, Denmark. sem01@bbh.hosp.dk

    This study compared mortality among Danish citizens with autism spectrum disorders (ASDs) with that of the general population. A clinical cohort of 341 Danish individuals with variants of ASD, previously followed over the period 1960-93, now on average 43 years of age, were updated with respect to mortality and causes of death. Standardized mortality ratios (SMRs) were calculated for various times after diagnosis. In all, 26 persons with ASD had died, whereas the expected number of deaths was 13.5. Thus THE MORTALITY RISK AMONG THOSE WITH ASD WAS NEARLY TWICE THAT OF THE GENERAL POPULATION. The SMR was particularly high in females. The excess mortality risk has remained unchanged since our first study in 1993. Eight of the 26 deaths were associated with epilepsy and four died from epilepsy. Future staff education should focus on better managing of the complex relationships between ASD and physical illness to prevent avoidable deaths.PMID: 18579647

    J Autism Dev Disord. 2009 Oct 17.

    Mortality in Autism: A Prospective Longitudinal Community-Based Study.

    Gillberg C, Billstedt E, Sundh V, Gillberg IC. Institute of Neuroscience and Physiology, Child and Adolescent Psychiatry, Queen Silvia’s Hospital for Children and Adolescents, Gothenburg University, Kungsgatan 12, 411 18, Göteborg, Sweden, christopher.gillberg@pediat.gu.se.

    The purposes of the present study were to establish the mortality rate in a representative group of individuals (n = 120) born in the years 1962-1984, diagnosed with autism/atypical autism in childhood and followed up at young adult age (>/=18 years of age), and examine the risk factors and causes of death. The study group, which constituted a total population sample of children with these diagnoses, were followed up in Swedish registers. Nine (7.5%) of the 120 individuals with autism had died at the time of follow-up, A RATE 5.6 TIMES HIGHER THAN EXPECTED. THE MORTALITY RATE WAS SIGNIFICANTLY HIGHER AMONG THE FEMALES. ASSOCIATED MEDICAL DISORDERS (including epilepsy with cognitive impairment) AND ACCIDENTS ACCOUNTED FOR MOST OF THE DEATHS, and it was not possible to determine whether autism “per se” actually carries an increased mortality risk. PMID: 19838782

  24. Natasa December 29, 2009 at 23:08 #

    Epilepsia. 2005 Jun;46(6):918-23.
    Epilepsy in young adults with autism: a prospective population-based follow-up study of 120 individuals diagnosed in childhood.

    Danielsson S, Gillberg IC, Billstedt E, Gillberg C, Olsson I.

    Department of Pediatrics, Queen Silvia Children’s Hospital, Göteborg, Sweden. susanna.danielsson@vgregion.se

    PURPOSE: Little is known about the long-term outcome of epilepsy in autism and the epilepsy characteristics of adults with autism. This prospective population-based study was conducted in an attempt to point out differences on a group basis between adults with autism with or without epilepsy, and to describe the occurrence, the seizure characteristics, and the outcome of epilepsy in autism. METHODS: One hundred eight of 120 individuals with autism diagnosed in childhood and followed up prospectively for a period of 13-22 years were reevaluated at ages 17-40 years. As adults, the majority had mental retardation and autistic disorder or autistic-like condition. Interviews were performed with the caretakers of 42 of 43 individuals with a history of epilepsy, and their medical records were reviewed. RESULTS: Adults with autism and mental retardation constituted a severely disabled group. On a group basis, both the cognitive level and the adaptive behavior level were lower in the epilepsy group than in the nonepilepsy group (p<0.05). In all, 38% had epilepsy. One third had epilepsy onset before age 2 years. Remission of epilepsy was seen in 16%. Partial seizures with or without secondarily generalized seizures were the dominating seizure type. CONCLUSIONS: In a community sample of individuals with autism followed up from childhood through to adult age, one of three had epilepsy since childhood/adolescence. Severe mental retardation and autism are significantly associated with epilepsy, especially in female patients. Seizure frequency has a great impact on the individuals' lives. Specialist medical care is needed in this severely communication-disabled population. PMID: 15946331

  25. Jake Crosby December 29, 2009 at 23:25 #

    “Dedj,”

    As it appears, you don’t take issue with autism lowering one’s life expectancy.

  26. Mike Stanton December 29, 2009 at 23:31 #

    Natasa
    with so many epilepsy related deaths have they calculated the expected rates for a non-autistic population with similar rates of epilepsy?

  27. kwombles December 29, 2009 at 23:32 #

    Natasa,

    Note that many of those deaths were from epilepsy, not from being autistic. I wonder what the mortality rate is in epileptics compared to the general non-epileptic population, or what the mortality rate is in autistic without accompanying epilepsy?

    It would appear that drowning deaths would still be higher, irrespective of removing epileptics from the mortality studies. No one is denying that autistic individuals have an increased mortality rate, not if they’ve read the science. That doesn’t prove that the condition of autism kills. In fact, it is not a deadly disease. And even you know that. Are autistic individuals at greater risk of accidental death? Yes.

    By the way, a prefatory comment would have been helpful in tying together your study dump with the actual article. It’s only in rereading through the comments that it becomes clear as to why you did the study dump.

    My name links to a post I did Dec 10 on the current evidence for increased mortality rates in autistic individuals.

  28. kwombles December 29, 2009 at 23:32 #

    Hah, Mike, like minds!

  29. Jake Crosby December 29, 2009 at 23:52 #

    “Sullivan,”

    Have you forgotten this blog entry you wrote four months ago?

    https://leftbrainrightbrain.co.uk/?p=2710

    You should know better than everybody else here that I have no control over what gets put on AoA beyond my own writing.

    • Sullivan January 1, 2010 at 08:25 #

      “Sullivan,”

      Have you forgotten this blog entry you wrote four months ago?

      https://leftbrainrightbrain.co.uk/?p=2710

      You should know better than everybody else here that I have no control over what gets put on AoA beyond my own writing.

      I believe you recently referred to yourself on this blog as “editor”. What you describe above is “writer” or “contributor”.

      http://dictionary.reference.com/browse/editor

      a person having managerial and sometimes policy-making responsibility for the editorial part of a publishing firm or of a newspaper, magazine, or other publication.

  30. Joseph December 30, 2009 at 14:52 #

    She has no right to bark at the IACC that autism does not kill people when those with more severe cases have lowered life expectancies as a result of their autism.

    A lowered life expectancy doesn’t mean that the condition kills people, Jake. Perhaps an analogy would help. Being male, for example, will lower your life expectancy relative to the average person. This is definitely not the same as saying “maleness kills people.”

  31. Dawn December 30, 2009 at 16:32 #

    Hi all. As a brief answer regarding Epilepsy and life expectancy, I searched (via Google U – YAY /snark) and found this article (bolding, if it works, is mine):

    Brain 2004 127(11):2427-2432; doi:10.1093/brain/awh267

    Life expectancy in people with newly diagnosed epilepsy

    Athanasios Gaitatzis1,2, Anthony L. Johnson3, David W. Chadwick4, Simon D. Shorvon1 and Josemir W. Sander1,2

    1 Department of Clinical and Experimental Epilepsy, Institute of Neurology, University College London, 2 Neuroepidemiology Unit, University College London Hospitals NHS Trust, London, 3 MRC Biostatistics Unit, Institute of Public Health, University Forvie Site, Cambridge and 4 University Department of Neuroscience, Walton Centre for Neurology and Neurosurgery, Liverpool, UK

    Correspondence to: Professor J. W. Sander, Institute of Neurology (Box 29), Queen Square, London WC1N 3BG, UK E-mail: lsander@ion.ucl.ac.uk

    Epilepsy carries a risk of premature mortality, but little is known about life expectancy in people with the condition. The UK National General Practice Study of Epilepsy is a prospective, population-based study of people with newly diagnosed epilepsy. A cohort of 564 patients with definite epilepsy has been followed for nearly 15 years and there have been 177 deaths. These data have been used to estimate life expectancy of people in this cohort by employing a parametric survival model based on the Weibull distribution. Life expectancy in people with epilepsy was estimated as a function of age at, and time from, diagnosis according to two broad aetiological groups. These estimates were then compared with life expectancy in people of the same age and sex in the general population. Reduction in life expectancy can be up to 2 years for people with a diagnosis of idiopathic/cryptogenic epilepsy, and the reduction can be up to 10 years in people with symptomatic epilepsy. Reductions in life expectancy are highest at the time of diagnosis and diminish with time. Our model provides broad estimates, but it appears that the higher mortality rates in people with newly diagnosed epilepsy translate into decreased life expectancy.

  32. David N. Brown December 31, 2009 at 18:40 #

    Something very interesting: Blaxill’s line is pretty much identical to one reportedly given be an NAA rep to Autism Newsbeat: “We have no plans at the moment to act on this or any other new information, which at the most amounts to a distinction without a difference.”
    This suggests to me that their statements were being directed by a third party (almost certainly Wakefield or the “Hairy Biped”). The possibility readily comes to my mind that AoA and NAA were provided IN ADVANCE with a “canned” reply when their wrong numbers were exposed.

  33. Science Mom December 31, 2009 at 19:26 #

    You know “Science” Mom, you are really one to talk about red herrings when you completely avoided what I said. Katie Miller, being very high-functioning herself and having been the girlfriend of the founder of the biggest online forum for people on the spectrum, is not exactly put in any immediate danger by her ASD. She has no right to bark at the IACC that autism does not kill people when those with more severe cases have lowered life expectancies as a result of their autism.

    I wonder Jake, why do you insist on putting my username in quotations since it is a consistent username here? I didn’t avoid what you said, I merely pointed out that mortality amongst those with autism is a red herring and no point in addressing such. You responded to my comment about Blaxill and Olmstead using the same metric for accusing Sullivan of harassment as you did with accusing Katie Wright of intimidation. Something which you have still not substantiated in any meaningful way. I also didn’t see her ‘barking’; can you really be that sensitive and intimidated by an articulate young woman that is perhaps, receiving attention and legitimacy from authorities that you so desperately crave?

  34. FreeSpeaker December 31, 2009 at 20:39 #

    Dear SCIENCE! Mom: What you fail to understand (wink, wink) is that “Jake The Flake”, needs to marginalize anyone who disagrees with him when he knows he lacks the facts to refute you. That is why he calls her statements “barking”.

    You can ” ” me on this.

  35. Chris December 31, 2009 at 20:47 #

    Science Mom, Jake always puts the word science in quotes. He does it when mentioning the ScienceBlogs, it is his way of trying to be “smart.” It doesn’t get him any points:

    Of course you did, you’re “Science”/Discover Blogs’ handy troll.

    If you read that, you will see that he cries Conspiracy! instead actually provide evidence.

  36. FreeSpeaker January 1, 2010 at 01:49 #

    We should not lose sight of the fact that Blaxill AND Olmsted had ready access to the proper means of computing the amount of royalties, and, instead, did not bother to go find it. This reminds me of Olmsted’s hunting for the Clinic for Special Children in Amish country. I would characterize this as “eyes wide shut” researching.

  37. Natasa January 1, 2010 at 17:44 #

    Mike, epilepsy may carry the same or similar mortality rates in autistic and non-autistic populations, but the RATE OF EPILEPSY ITSELF is astronomically higher in autistic population. Therefore the rates of epilepsy-related deaths are astronimically higher in autistic population.

    Autism not only devastates, it actually KILLS.

    (btw no, of course it is not “autism” that kills, but the underlying biomedical problems that cause symptoms of autism that simultaneously cause epilepsy and premature deaths…. Grow up and read some science.

  38. Dedj January 1, 2010 at 18:11 #

    “As it appears, you don’t take issue with autism lowering one’s life expectancy.”

    I niether stated nor implied such a thing, nor is it the actual arguement you intially opposed. Simply because I disagree that it is autism itself (and not the reasons I stated which you appear to have convieniently ignored) that kills, does not mean I am okay with premature deaths in people with autism. Your habit of making stuff up as you go along is not amusing.

    I have worked in services which have helped people with autism deal with potentially fatal co-morbid conditions, such as epilepsy, diabetes, asthma, anaemia, COPD and so on.

    You were asked to supply your reference to your counter-claim that it is autism itself that kills. Do so.

  39. Dedj January 1, 2010 at 18:13 #

    “of course it is not “autism” that kills, but the underlying biomedical problems that cause symptoms of autism that simultaneously cause epilepsy and premature deaths”

    I was under the impression that was Mikes point.

  40. Dedj January 1, 2010 at 18:34 #

    “I believe you recently referred to yourself on this blog as “editor”. What you describe above is “writer” or “contributor”.”

    Jake has been described over at AoA as a “Contributing Editor” since his Feb 19 2009 post, up to and including his Dec 22 2009 post.

    Contributing Editors may have editorial powers, but may also be mere contributers. If Jake did call himself an ‘editor’ without the ‘contributing’ prefix, then he had no right to unless he has editorial powers.

    Otherwise he’s just a contributer and should regard himself as such regardless of his title.

  41. Joseph January 1, 2010 at 18:37 #

    the RATE OF EPILEPSY ITSELF is astronomically higher in autistic population. Therefore the rates of epilepsy-related deaths are astronimically higher in autistic population… Autism not only devastates, it actually KILLS.

    “Astronomically” is an exaggeration. It might be one order of magnitude higher. In the general population, the prevalence of epilepsy is probably 0.5% to 1.0%. As of 2005, 6% of autistics registered with CalDDS were reported to have epilepsy (and this is gradually dropping in tandem with admin. prevalence rises.)

    Excess mortality from epilepsy seems to be about 5 in 1,000 per year (Shackleton et al. 1999.) For an average autistic, it might be about 3 in 10,000 per year. So in a given year, you might have an additional 0.03% chance of dying (without counting all the other factors that might result in excess risk.)

  42. Kev January 1, 2010 at 20:00 #

    Natasa – what science should we grow up and read that establishes autism kills?

  43. Mike Stanton January 1, 2010 at 22:51 #

    Natasa,
    with regard to
    Autism. 2008 Jul;12(4):403-14.
    Mortality and causes of death in autism spectrum disorders: an update.

    I do not have access to the update but I do have their original paper from 1999 published in Autism Vol 3(1) 7–16. I note that

    The study included all children with variants of pervasive developmental disorders seen as inpatients at the University Clinics of Child Psychiatry in Copenhagen and Aarhus during the 25 year period 1960–84.

    This suggests that their data may not be applicable across the entire spectrum. Firstly, not all autistic children become psychiatric inpatients. Secondly, the diagnostic criteria in use during that period were more restrictive than those we use today.

    There was one confirmed death from an epileptic seizure and one suspected. Two subjects with epilepsy in residential care had swallowed dangerous objects and choked on them while unsupervised. One person with epilepsy died of meningitis and one drowned in a swimming pool, probably as a result of a seizure.

    Only one of the subjects died in childhood, a boy aged 9 with subacute sclerosing panencephalitis. He died of pneumonia. The remaining five deaths comprised two suicides, one accidental overdose, one other case of pneumonia and one urethral bleeding from a person with renal cancer.

    While all these deaths are a cause for concern the issue seems a little more complex to me than declaring that autism is a killer. In their conclusion the authors suggest that improving the quality of care could have prevented some of these deaths.

    Altogether, mortality in our sample of patients was about double (SMR = 1.93) the expected rate, taking age, gender and temporal trends into consideration. This is a higher rate than found in earlier reports on deaths in autism, and may be due to the fact that these patients were followed for a longer period than has been done previously, that is, up to a mean of 31 years (range 14–48 years) of age.

    On the other hand, we had expected to find an even higher mortality in this relatively severely handicapped group. The rather limited excess mortality is, however, in agreement with the general trend seen in Western countries for survival among the mentally retarded, for whom estimates of life expectancy have been increasing for the last decades (McGrother and Marshall, 1990; Carr, 1994). Nevertheless, some of the deaths reported here might have been avoided. The five deaths related to and probably caused by epilepsy (during seizures and accidents) demand special consideration. Some of these deaths are potentially preventable by careful monitoring of anti-epileptic treatment.

    I find your conclusion, … the underlying biomedical problems that cause symptoms of autism that simultaneously cause epilepsy and premature deaths, to be unsupported by the data. Of the twelve deaths in the original study as well as five with epilepsy there was one with hydrocephalus/epilepsy, one with Hodgkin’s disease, the boy with SSPE, the cancer victim also had tuberous sclerosis. The two suicides had a history of depressive illness and the accidental overdose, the only one without an additional illness or diagnosis was a drug addict of many years.

    It is my experience that reading scientific papers reveals rather more complexity than the abstracts suggest.

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