The war on Tom Insel and the IACC

23 Oct

Tom Insel is director of the National Institute of Mental Health (NIMH) but he is better known to readers of this blog as the chair of the Interagency Autism Coordinating Committee. If you read other autism blogs, he’s probably very well known to you, as he has been the target of a concerted attack from the vaccines-cause-autism groups for a few months now. They even got the publicist, David Kirby, to take their battle to the public in a CBS interview.

Let me take a moment to make a side point. The vaccines-cause-autism groups (SafeMinds, Generation Rescue, the National Autism Association, Talk About Curing Autism (TACA)…I’m probably missing one or two), are basically a single consortium as evidenced by their single blog and their shared membership. I don’t see the need to treat them as separate entities. I really don’t see that they should be given multiple representations on the IACC.

I’ve been watching the IACC pretty closely for some time. I’ve also been watching the vaccines-cause-autism consortium. I’ve been watching the consortium build pressure against Dr. Insel.

One thing I’ve noticed: this level of pressure directed at Dr. Insel wasn’t always the case. Less than a year ago, Dr. Insel was not their target.

Take a look at one of the classic pieces of IACC intimidation: a piece called “Grinkers Stinker“. This is dated January, 2008. It was timed to coincide with a 4-day workshop that was the kick-off for the Strategic Plan process.

“Grinker’s Stinker” was a piece about the Dr. Joyce Chung, the former IACC coordinator. She is the wife of Prof. Roy Richard Grinker, anthropologist and author of the book Unstrange Minds. Dr. Grinker has publicly stated that he accepts the scientific consensus that vaccines did not cause an epidemic of autism. Dr. Chung has made no public statements (at least that I can find), but the lack of actual information about her or her opinions didn’t stop a blog post decrying her position on the IACC. From the blog post:

Does Joyce Chung agree with her husband? Did they ask her this question before she took the job?

Oddly, the last comment to that blog piece, by Generation Rescue’s “DC Liason” Kelli Ann Davis, starts with the question, “Can I suggest that we try and put an end to all the mudslinging?”

History has proven that, no, the Age of Autism can’t put an end to the mudslinging. Unfortunate, that.

Take a look at the blog post. There is no mention of Dr. Insel. No one decrying his “lack of leadership”, no one claiming “collusion” or “malfeasance”. None of the mudslinging terms currently used against members of the IACC, especially Dr. Insel. In fact, the first mention of Dr. Insel is in the comment by Ms. Davis. In her comment Ms. Davis suggests that Dr. Insel will be watching out for conflicts of interest.

Times certainly have changed. The Age of Autism likes to demonize those it disagrees with, and Dr. Insel certainly has been a recent target.

What happened?

Dr. Insel (a) had the IACC reconsider an initiative to call for a vaccine-autism study to be included in the Strategic Plan and (b) spoke before a congressional hearing about why vaccine/autism studies are not a high priority.

Not surprising to many of the readers here, I am sure, the vaccines-cause-autism consortium have a single issue (vaccines). As long as Dr. Insel’s position on vaccine/autism research, there was hope for the consortium and they left him alone. Once his current opinion formed and was public, he was public enemy number one. Yes, Dr. Paul Offit (vaccinologist and outspoken critic of the notion that vaccines cause autism) has been superseded.

Recently, Dan Olmsted (owner of the Age of Autism website) called for Dr. Insel to resign. Again, it boils down to the single issue: vaccines.

So, here we are. The vaccines-cause-autism consortium has declared war on Tom Insel for opposing their single-item agenda. If you think “war” is too strong a word, take it up with Mr. Olmsted. In referring to the recent incident where notes from an IACC member were made public:

…notes dropped on the floor (see the notes here) at the IACC, recovered by friendly forces and reported on our blog…

Yes, the Age of Autism people are “friendly forces”.

Here’s my perspective on Dr. Insel, for whatever it may be worth. He is the chair of the IACC. In my opinion, his role is to run the meetings and manage the staff. He should be getting good people in to serve on the IACC and the subcommittees and good people to consult on the topics that are discussed. Basically, his role is that of a facilitator–get good people together with the tools they need to do their job. He needs to be knowledgeable enough on the subject (autism) to do this.

You know what? Given the fact that his full time job is director of the NIMH, he’s actually done a pretty good job.

Is there room for improvement? Heck yeah. How about putting a greater emphasis on research into the needs of autistic adults? The majority of autistics are adults. And yet only 5% of the funding is being applied to this critical area.

But, of course, the squeaky wheels (the vaccines-cause-autism consortium in this case) get the grease. The squeaky wheels have been calling for research into environmental causes of autism. Tens of millions of dollars are being focused on this. Why are the squeaky wheels unhappy? Because the squeaky wheels didn’t really mean “environmental causes”. That was only a code word for vaccines.

This level of tension is not just sad. It is detrimental to the progress of the IACC. There are a lot of autistics, parents, professionals and organizations who are interested in working with the IACC. Why spend any more effort on the groups that have declared war?

(note, I made a number of changes in this piece shortly after publishing it)

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43 Responses to “The war on Tom Insel and the IACC”

  1. Sullivan October 23, 2009 at 08:20 #

    Let me make take a quick diversion here. Dan Olmsted seems to have lost all semblance of objectivity. Yes, objectivity is a lot to ask from the owner of the Age of Autism. But Dan Olmsted started out as a UPI journalist. He can no longer claim to be a journalist reporting on a subject from the outside. He isn’t even an “embedded journalist”. No, he seems to see himself as a member of the community with the right to call for what I see as a pretty major change in a committee that affects my kid’s future. If he wants to take the stance as a taxpayer there isn’t much I can say. But he seems to want to act as an “autism community” member.

    I have never seen anything that gives Mr. Olmsted the standing to act as a member of the communities.

  2. Mike Stanton October 23, 2009 at 12:42 #

    Looking on the bright side,

    a year ago the anti vaccine lobby had high hopes of furthering its agenda via IACC. Now that is looking exceedingly unlikely and they are blaming everybody except themselves.

    There was a chance that vaccine research could have been included in the strategic plan if they had gone about it the right way. Now every public tantrum and personal attack makes it more and more unlikely that they will ever be taken seriously again.

  3. farmwifetwo October 23, 2009 at 14:07 #

    Oddly, the last comment to that blog piece, by Generation Rescue’s “DC Liason” Kelli Ann Davis, starts with the question, “Can I suggest that we try and put an end to all the mudslinging?”

    LOL…. talk about “the pot calling the kettle black”….. is this not what LBRB, Hub, ASAN etc do to those that don’t share their POV???

  4. Corina Becker October 23, 2009 at 15:57 #

    farmwifetwo: I suggest you consider this: LBRB and ASAN, as well as many others both on and off the Hub, are perfectly willing to call people out on their contradictions and inconsistencies. Sometimes not in the most nicest of ways, yes, but not always the case.

    However, in my readings of LBRB, ASAN and the Hub, I have yet to see the same malicious level of threatening behaviour that encourages intimidation and harassment as is present in the posts of Generation Rescue, AoA and associates.

    At worst, then, you can say the gray pot is calling the black kettle black.

  5. Dedj October 23, 2009 at 16:45 #

    “is this not what LBRB, Hub, ASAN etc do to those that don’t share their POV???”

    Mostly, no.

    ASAN has been nothing if not polite and diplomatic in each and every one of their compliants and campaigns. They may have used political power to get their way, but they’ve always carefully explained why. If you know of any ASAN material that openly accuses people of incompetance and corruption then you will post it or shut up.

    The Hub is a collection of individual blogs, with most of those blogs run by individuals. This in no way compares to the position of responsibility that AoA is in as a self-proclaimed daily newspaper. It’s hierarchy is even set up like a newspaper.

    LB/RB is about the only comparable blog on the hub.
    LB/RB rarely (as in never) uses childish and insulting graphics at the top of the story, unlike the Grinker story above.
    LB/RB rarely (if ever) accuses people of incompetance just for appointing someone other than their preffered candidate.
    LB/RB rarely (if ever) calls for people to resign merely for disagreeing.

    If you know of examples of this happening recently, you will quote them or shut up.

  6. Dedj October 23, 2009 at 16:49 #

    As an aside, I find it incredibly ironic that a person infamous around these parts for the ‘aggresive’ and ‘accusatory’ tone to most of their posts should have the bare faced cheek to try to score cheap points with the ‘pot calling the kettle black’ gambit.

    Learn to look at yourself first fw2.

  7. Jake Crosby October 23, 2009 at 18:08 #

    “Dedj” – you are a piece of work.

  8. Jake Crosby October 23, 2009 at 18:24 #

    Seriously, you’re a nameless ND troll who hides behind a phony name abusing people trying to have civil discourse with you while bragging about your own self-importance. It’s pathetic.

    • Sullivan October 23, 2009 at 18:29 #

      Jake Crosby,

      you don’t exactly have the moral high ground when it comes to calling out others on being a troll. It’s difficult to take your claims that Dedj doesn’t help in “civil discourse” when your last comment was a brief and blunt “you are a piece of work”.

  9. Dedj October 23, 2009 at 18:28 #

    Calling someone a ‘piece of work’ implies that thier behaviour is uncalled for and distasteful.

    Pointing out that FW2 has often been needlessly aggressive, dismissive and accusatory, is neither uncalled for nor distasteful.

    I notice that you did not call FW2 out on her unsupported, unevidenced generalised accusation of hypocrisy. Nor did you contribute anything of relevance to the thread topic.

    Funny that.

    We both know what you’re trying to do here, and we both know it always backfires on you severely, often without your opponents having to do anything.

    Btw – you still have numerous questions to answer in other threads.

    I suggest for the sake of your image that you have some business elsewhere first before you begin spouting insults.

    Toodles.

  10. Dedj October 23, 2009 at 18:41 #

    “Seriously, you’re a nameless ND troll who hides behind a phony name”

    I have already informed you that I have reasons to remain nameless. You have also been informed by multiple sources, multiple time why that arguement is worthless.

    Btw , a troll has a definition of “a person who posts inflammatory remarks or posts with intent to inflame or disrupt”. My post to FW2 makes several requests that explicitly relate to the thread topic and her response.

    On the other hand, your last two comments are neither relevant nor civil and are both inflammatory and disruptive.

    “abusing people trying to have civil discourse”

    Brash accusations of hypocrisy are not civil.

    “with you while bragging about your own self-importance.”

    I’m not aware of where I have done this anywhere. You will provide a direct quote and reference.

    I have made a note that I consider myself (and have the legal status of) minimally experienced in my profession and the field of autism.

    I don’t appreciate you accusing me of things I have neither done nor said.

  11. Joseph October 23, 2009 at 18:57 #

    Demanding that people out themselves is a tactic of cranks, and it usually occurs when said crank has failed the argument and is trying to change the subject.

    Anonymity is perfectly valid protection against cranks, plus it’s an excellent way to limit an opponent’s potential to use the genetic fallacy, as argued by The Bronze Dog, who further elaborates on the anonymity “doggerel.”

    • Sullivan October 23, 2009 at 20:22 #

      Jake Crosby,

      while the discussion of whether anonymity is a good or bad thing is very engaging–would you like to address the question of why Dr. Insel was a good leader a year ago, and is only considered bad now (at least to the good people on your blog)?

      It appears from your comments that you agree that intimidation is a bad thing. You can correct me if I am wrong there.

      Do you feel that the activities of your blog rise to the level of intimidation?

      I’d be very interested to hear.

  12. Dedj October 23, 2009 at 19:20 #

    “Anonymity is perfectly valid protection against cranks”

    Indeed, as I’ve noted here before, I am certainly not the only person who may be considered ‘ND’ in my profession, nor am I the only person with my name who is ‘ND’, but I am the only person with my name in my profession, at least as far as I’ve been able to find out.

    As I had to explain to John B multiple times, any crank or kook could potentially cause me significant bother for very little effort should they find out who I am. Highly unlikely, as such a complaint would get laughed out of the office, but I’d still have to explain why I wasn’t more careful.

    Ironically, I’m more often referred to as ‘Dedj’, by members of my profession than I am by my real name.

  13. Patrick October 23, 2009 at 20:23 #

    When and if I were ever to get to the point of choosing a caretaker, I would certainly not be impressed by well reasoned “blog” arguments enough to choose either FW2 or JC.

    I feel that Thom Insel needs to remain onboard doing what good work we can get done. Agree that multiple seatings of potentially biased members on IACC would be ruinous to getting the whole community served, versus the small segment that haven’t come to accept that the cause might be more complex than their current perceived enemy.

    I hope everyone looks at what U.K. did yesterday by passing their Autism Bill, and realize that we need similar direction and support for the U.S.

  14. Jake Crosby October 23, 2009 at 20:44 #

    “I am significantly more skilled at finding information than you are – including that which was your responsibility to find and present.”
    Posted by: Dedj | March 23, 2009 11:01 AM
    http://scienceblogs.com/insolence/2009/03/brian_deer_responds_to_andrew_wakefield.php

    Not to mention all the times you’ve bragged about having better qualifications than me based on your low-quality job.

    I know why you remain nameless, because you don’t want a blogger knowing who you are because you feel he is abusive to you. You can dish it out but you can’t take it.

    “Demanding that people out themselves is a tactic of cranks, and it usually occurs when said crank has failed the argument and is trying to change the subject.”

    No, Toxic Joe. Anonymity is a tactic of cranks so they can spew all the disgusting garbage they want without anyone knowing who they are, like you. I’ve stopped arguing against you all because I was tired of being abused but I decided I don’t care, I will call you out on your trash.

    Look at yourselves, defending an obvious bigot like Insel because his agenda to protect his brother are aligned with your agenda.

    Btw, he was not considered a good leader, not now, not one year ago:
    “Tom Insel has done a terrible job of including stakeholders’ opinions and priorities, yet there was a critical juncture when the plan could have been saved.”
    http://www.ageofautism.com/2008/12/a-message-to-au.html

    “I suggest for the sake of your image that you have some business elsewhere first before you begin spouting insults.

    Toodles.”

    So you are surreptitiously provoking a flame war by being abusive. When people are sick and tired of being abused by you, you claim victory as a result of getting the last word in edgewise. Vicious insults is all you and “Science”Blogs have.

    • Sullivan October 23, 2009 at 20:55 #

      Jake Crosby,

      you reply contains very little actual content. You do see that, don’t you?

      If I wanted to do you a favor, I’d ban you. You are not creating a good image for your blog.

      You might have a shred of support for your discussions on why people use pseudonyms if (a) your own blog required real names for commenters and (b) if your explanations were accurate.

  15. Jake Crosby October 23, 2009 at 21:06 #

    Wow, speak for your own blog. Given that the warm welcome I usually get whenever I comment here is typically from someone who is anonymous, I can see why they’d want to cowardly hide behind fake names. And given that you frequently serve as the apologist for them, I can see why you would want to do the same, “Sullivan.”

    • Sullivan October 23, 2009 at 21:51 #

      Jake Crosby,

      I don’t speak for the blog, I speak for myself. But I do clearly speak for myself and I do clearly speak my opinions.

      I am sorry that you don’t feel welcome here. I appreciate the fact that you come here to comment. Usually. When your comments are lacking in content, or clearly designed to derail a conversation into an off-topic path, I am less appreciative.

      Yes, “Sullivan” is a pseudonym. I make no secret about that. I am not a big blue-green hairy cartoon monster. I have made the reasons clear as to why I blog under a pseudonym. If you don’t respect those reasons, that is your right. The whole psuedonym discussion is actually quite dull, in my opinion. But, feel free to continue to concentrate on it. It allows you a good opportunity to avoid the real important questions being discussed here.

  16. NightStorm October 23, 2009 at 21:11 #

    Seriously, you’re a nameless ND troll who hides behind a phony name abusing people trying to have civil discourse with you while bragging about your own self-importance. It’s pathetic.

    At least when Dedj is called on his shit he does fess up, when you are called on bull you cry and run away saying that we can’t have a civil discourse. Cry. More. Your tears give me strength and feed troll-powers. I am a bio-woman I got bigger testicles than you Crosby. If you want civil discourse participate without name calling and grow the hell up.

  17. Dedj October 23, 2009 at 21:27 #

    “So you are surreptitiously provoking a flame war by being abusive.”

    I did no such thing. I asked FW2 qustions which expressly relate to the thread content and her thread input.

    “When people are sick and tired of being abused by you, you claim victory as a result of getting the last word in edgewise.”

    I have never done such a thing, although I have stated or implied that my opponents are unlikely to come back as they are unable to answer the questions put to them. In all bar one instance (where they – not me – got barred for being abusive) I have been proven right again and again.

    I am not aware of any instance – much less any pattern that would indicate a habit – where I have proclaimed ‘victory’ simply because I have outworn my opponent.

    You will provide a quote or retract that accusation.

    “Vicious insults is all you and “Science”Blogs have.”

    Compared to what is thrown at the IACC, Offit, Deer et al. on a routine basis “Substantiate your argument or go away” is extremely mild.

  18. NightStorm October 23, 2009 at 21:39 #

    People telling you to “Source it” is nothing compared to AOA’ers and anti-vax people calling Offit and threatening his children and family.

  19. Joseph October 23, 2009 at 21:40 #

    No, Toxic Joe.

    Clearly, anonymity is not completely effective against the genetic fallacy.

    Anonymity is a tactic of cranks so they can spew all the disgusting garbage they want without anyone knowing who they are, like you. I’ve stopped arguing against you all because I was tired of being abused but I decided I don’t care, I will call you out on your trash.

    Utter nonsense. Ever heard of the peer review process? How do you think it works? Every heard of the Student’s t test from statistics? It was first proposed by ‘Student,’ hence the name. Ever heard of anonymous whistle-blowing?

    Look at yourselves, defending an obvious bigot like Insel because his agenda to protect his brother are aligned with your agenda.

    Look at you and your paranoia about imaginary motives. Look up “appeal to motive” please, or take Logic 101 already.

  20. Dedj October 23, 2009 at 22:01 #

    “”I am significantly more skilled at finding information than you are – including that which was your responsibility to find and present.”
    Posted by: Dedj | March 23, 2009 11:01 AM
    http://scienceblogs.com/insole…..efield.php

    Not to mention all the times you’ve bragged about having better qualifications than me based on your low-quality job.”

    Jake, when posting evidence, it helps to relate what that evidence is supposed to be for. If you don’t make it clear what the hell it is you’re actually talking about, you can’t expect people to not think you need to work on your argumentation skills a bit more. What exact part of my post is that quote even supposed to relate to? Please learn basic posting etiquette.

    I proved repeatedly that I was more capable of finding evidence in that thread than you were. I had to supply some of your references for you. I had to remind you – repeatedly – that all of my sources were either yours or the primary source, journal article, advisory organisation for your sources. I had to remind you – repeatedly – that far from posting ‘cheap american diagrams’ (from a japanese website for an organisation based in japan) I had deliberetely stuck to only what was found by looking at your sources and following a few links. That you are still hung up about it (I won’t speculate wheter you used google or have stored a copy on your computer) and still don’t appear to have understood what was even going on does not speak well for you.

    At no point in that quote did I brag about my self importance, which is the accusation you were asked to substantiate. Find a quote where I bragged about my self-importance or retract the accusation.

    I am not aware of where I have ‘bragged’ about my ‘low-quality’ job. I have repeatedly pointed out that there is no evidence to suggest that you are in any way relevantly experienced, trained, or qualified. Having clinical and vocational experience with autism services does count as experience wheter you like it or not.

    I have repeatedly pointed out that many of the obvious gaps in your knowledge by pointing out that such knowledge is basic entry level knowledge required of candidates for entry level qualifications.

    None of this is similar to ‘boasting’ by any definition of ‘boasting’ that I’m aware of.

    “I know why you remain nameless, because you don’t want a blogger knowing who you are because you feel he is abusive to you. You can dish it out but you can’t take it.”

    There are several bloggers that I would avoid if I knew them personally. These bloggers are abusive to anyone that disagrees with them as a matter of course.

    The accusation that I can’t take it is absurd. Not only is your level of aggression and insults significantly higher than what you are accusing me of, there’s also no reason why I should risk potential violence or formal complaints agianst myself for what amounts to

    “I’ve stopped arguing against you all because I was tired of being abused but I decided I don’t care, I will call you out on your trash.”

    But you haven’t stopped, despite having made that declaration several times. You continually assert that you are feed up with the abuse, yet you repeatedly make irrelevant posts in threads that often have little or nothing to do with you and then turn them into the Jake Show. You then whine and moan when people call you out on it. Everyone can see how you bring it on yourself except you.

    A suspicious person would suspect that you willfully undergo all of this because you like it and it validates your feelings for yourself.

    Given that you found that quote, you’d have no trouble finding the time stamp for your accusations against Katie Miller, will you? Go off an find it then.

    I’m posting this whilst taking a break from reading journals and playing DoW2. Far from being aggresive, I’m actually rather amused.

  21. Dedj October 23, 2009 at 22:18 #

    “There are several bloggers that I would avoid if I knew them personally. These bloggers are abusive to anyone that disagrees with them as a matter of course.”

    And to add: I’m accountable to an organisation that could prevent my employment within the whole country, and could influence my employment worldwide. Given the behaviour of some of these bloggers has included collating and cross-posting personal identifying information (‘outing’) which has resulted in direct threats, I don’t need to give people more ammo than they need.

    This is all rather silly anyway. I have never used my status as an arguement-from-authourity. Anyone that thinks otherwise has clearly misread the wording and intent of my posts.

    Anyway, back to the topic at hand please.

  22. Mike Stanton October 23, 2009 at 22:48 #

    If Jake did come here to derail the conversation it looks like he has succeeded … again.

    I am not nameless. I post under my real name. I am easily traceable as an elected member of Council of the National Autistic Society. If I do not conduct myself in a proper manner you can complain to the NAS nas@nas.org.uk Anyone who obtains a copy of my book can find out where I work and complain to my employer. I think I am as accountable as anyone on the internet.

    I agree completely with this post by Sullivan. The proponents of the vaccine autism connection have approached IACC with one goal in mind, to place vaccine research at the heart of the autism strategy. They have failed partly because of the strategy they employed. They thought they could succeed by political manoeuvring. They failed because they are not very good at the politics. [Rule number one – win friends and influence people. Do not alienate them with your attitude.]

    They also failed because most of the other members of IACC saw this as a scientific question. I do not know whether it was polity or politesse that allowed Redwood et al to dominate discussion. But when it came to decision making science prevailed and vaccine research is not part of the plan.

    I share Sullivan’s frustration with the anti vaccine proponents. They have delayed and disrupted the work of IACC. They continue to malign honest public servants who must be wondering why they bother.

    The vaccine argument was lost not because of the motives of its critics but because it lacks data. All the personal attacks and obfuscations will not change that simple fact. If you have new data please bring it to the discussion. Or you may wish to mount a defence of the old data that was found wanting.

    Anything else just raises the noise to signal ratio and this commentator at least will endeavour to tune out the noise rather than respond to it.

  23. Dawn October 24, 2009 at 17:21 #

    Awww, Sullivan. You said “I am not a big blue-green hairy cartoon monster.” You just broke my heart. Here I thought that the picture was true to life. (sulks off to a corner to ponder the sadness of things.)

  24. Jon Pear (a.k.a. NeuroAster) October 24, 2009 at 19:02 #

    Re: “The majority of autistics are adults. And yet only 5% of the funding is being applied to this critical area.”

    Speaking as an autistic adult myself, I think things like this are what we should be focusing on.

  25. NightStorm October 25, 2009 at 02:03 #

    I was diagnosis at 18, right on the nose of a legal adult. It’s dissappointing really. I wish I had the DX much earlier. It’s depressing to see all the supports for kids and then. When they get the big one-eight, they have nothing.

  26. David N. Brown October 25, 2009 at 07:04 #

    Here’s something I’ve justput up at “Evil Possum”, to put Olmstead’s credibility in perspective: In 2005, Olmsted reported six unvaccinated autistic Amish children in Virginia. As of 2007, there were only 504 Amish in Virginia. As of April 2009, Olmsted continues to claim the Amish have an autism rate of 1/10,000.
    I wouldn’t trust Olmsted’s reporting if he interviewed Oprah and said she was fat.

  27. Joseph October 25, 2009 at 14:34 #

    Olmsted reported six unvaccinated autistic Amish children in Virginia. As of 2007, there were only 504 Amish in Virginia.

    That’s an extremely high rate, if you consider that perhaps only 30% of Amish are children. Also, Dan Olmsted didn’t go looking for PDD-NOS or Asperger’s kids I’m sure, plus it’s implausible he did an exhaustive search.

    Either the figures are in error, or the Amish have an extremely high rate of genetic syndromes that manifest as autism.

  28. David N. Brown October 25, 2009 at 21:22 #

    I don’t know about the 30% figure, as the Amish are thought to have a very high birthrate. Given the many other genetic disorders are known to occur often in the Amish,it wouldn’t be surprising at all if they had an elevated autism rate. As far as Olmsted’s work, it’s pretty clear he got most of his information from Frank Noonan and others with connections to alternative medicine. He also interviewed one “Amish Mennonite” woman who was NOT a member of the Old Order. I’m satisfied his story was a hoax, but one to which he was an accomplice more than an instigator.

  29. David N. Brown October 26, 2009 at 05:35 #

    Bit of a correction: I read the full text of the aricle, and found that the six children weren’t from VA. But one of them was from Texas, which had only 135 Amish as of 2007.

  30. David N. Brown October 26, 2009 at 05:41 #

    Something else odd: Previously, when I followed links to the UPI site for Olmsted’s UPI/AOA articles, they didn’t work, but I today, I found one site that directed me to UPI’s pages. I had a similar experience with the NAA article last month. I’m wondering if Olmsted’s “Amish Anomaly” articles were really paid press releases from a third party.

  31. Sullivan October 26, 2009 at 07:33 #

    David N. Brown,

    expect to see the Amish prominently discussed in Mr. Olmsted’s upcoming book.

    There is something very strange about the Amish and autism, at least in some communities. It be interesting to see if the subject gets studied for real. It will be also interesting to see if Mr. Olmsted gets the real facts and interprets them in a sensible manner.

  32. David N. Brown October 26, 2009 at 09:32 #

    No need to wait and see. Olmsted has followed a very conistent pattern: No matter how accessible the facts are, he always manages to overlook or omit them. As for his book, we can hope it never gets published. I have found that it’s currently ben taken up by the Waxman Literary Agency, but that’s not the same as a publisher.
    I’ve learned a little about the UPI stories. Apparently, they’re accessible from upi.com, but not through the archives section. It would be very interesting to know why.

  33. Joseph October 26, 2009 at 14:12 #

    I don’t know about the 30% figure, as the Amish are thought to have a very high birthrate.

    The Amish population doubles every 20 years or so, which is a high rate. There are countries with similar rates, e.g. Yemen. In Yemen, 46.2% of the population are 0 to 14, which might be a more accurate figure. It’s still a very high rate when the case-finding method consists of asking around.

  34. David N. Brown October 26, 2009 at 17:57 #

    I’m a little skeptical about what is reported about the Amish birth rate. It seems to me that census methodology might be playing a role in their reported population growth. But, the most straightforward explanation is that the Amish have managed to reduce infant mortality, by using outside medical care (such as vaccination!) more often.

  35. Arthur Golden October 27, 2009 at 07:45 #

    Getting back to the subject of this blog entry – Dr. Thomas Insel as chairman of the IACC – I have some concerns about Dr. Insel and his views on autism. So I did a Google search and received other information over the internet.

    Soundbites from the news media should be handled with a lot of caution, but I think the official published statement made by Dr. Insel to a subcommittee of the United States Senate is a good source. On August 5, 2009, Dr. Insel so stated:

    “A fundamental insight and challenge is the heterogeneity of ASD. While we use one diagnostic category, research increasingly demonstrates that ASD covers many disorders, with different causes and possibly requiring different treatments.”

    This above statement from Dr. Insel seems to me to be very appropriate and I think it should be carefully considered by anyone involved with autism. Its implications deserve to be throughly discussed.

    Then, if Dr. Insel is the first-named author of two in an article in a scientific journal, such information should be carefully considered. One such article is in the January 2006 issue of Molecular Psychiatry, pages 11-17 titled “Cure therapeutics and strategic prevention: raising the bar for mental health research.” Although this article was published almost 4 years ago and written a number of months before that, I would be very concerned if the statements in the article about autism are the current views of Dr. Insel. Although there is no mention of autism explicitely in the abstract which does state “this essay argues for approaches that can lead to cures and strategies for prevention of schizophrenia and mood disorders,” the last sentence in the “introduction” is:

    “How can we ensure that less than 100 years from now schizophrenia, mood disorders, and autism will join the ranks of leprosy, syphilis, and tuberculosis?”

    Although I would not state that Dr. Insel equates autism with siphilis, putting them in the same sentence does give me pause. Even though I understand that Dr. Isel means that just as certain infectious diseases were eradicated over the past 100 years, he wants to ensure that certain mental disorders are eradicated in less than another 100 years. But putting autism together with schizophrenia and mood disorders as targets for eradication should concern anyone involved with autism, especially where Dr. Insel now chairs the IACC.

    In the very next section of the article “The public health challenge” Dr. Insel writes:

    “As a starting point, it is important to recognize the challenge. Mental illnesses are common, chronic, and disabling….Autism spectrum disorder, also not counted in the NCS-R, has been estimated to affect between 0.3 and 0.6% of children, many with a lifelong absence of language and severe social deficits.”

    There are several other mentions of autism in the article, clearly including autism with “mental illnesses.”

    The inclusion of autism with “mental illnesses” greatly concerns me. Dr. Insel is a psychiatrist; does he consider autism to be a mental illness? Over 30 years ago, as a young boy, my now 37 year-old son Ben was given his first official diagnosis of autism by a neurologist Dr. Peter Rosenberger of Boston and at least his type of autism seems to be a solely neurological condition. But earlier this month when the government of Israel required an updated diagnosis, Ben was sent to a psychiatrist, Dr. Rafael Eidelman, called the leading expert on autism in Israel, who again gave him an official diagnosis of autism, based on a 45 minute observation where the three core “deficits” of autism were noted as backed up by a review of about 200 pages of prior medical and other records and my answers to questions during the 45 minutes. Ben states he has no mental illness even though he has a diagnosis of autism. But today what is the view of Dr. Thomas Insel, the chair of IACC which oversees autism research in the USA?

    Arthur Golden

  36. Arthur Golden October 27, 2009 at 10:29 #

    I just reread the official published 6 page statement made by Dr. Thomas Insel to a subcommittee of the United States Senate on August 5, 2009. Although Dr. Insel does not mention autism nor ASD as a mental illness, as he did in the article published nearly 4 years ago – a viewpoint that greatly concerns me, Dr. Insel made some other statements that should be scrutinized by anyone involved with autism and ASD:

    “Autism spectrum disorder (ASD) is a group of complex neurodevelopmental disorders that range in severity and that are characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior.”

    These are the 3 core “deficits” of autism diagnosed in my own son Ben again this month. For purposes of diagnosis of autism, I personally do not object to his definition given to the United States Senate. I am just noting this recent official statement by Dr. Insel, who is chair of the IACC, for others to comment.

    “…with estimated costs for each person over his or her lifetime totaling $3 million. Families often incur large debts for medical and education services that public programs or medical insurance do not cover. Beyond the financial costs, ASD often leads to profound emotional hardships for persons with the disorder and their families. As more children with ASD become adults with ASD, access to services and lack of accommodation is a growing challenge.”

    For my own son Ben and our family, autism did not “lead to profound emotional hardships” but over 24 years ago at age 13 Ben had some months of extreme anxiety which disappeared when he left a negative ABA-type school program. For over 24 years Ben and us his parents have had a supportive school and then community environment and therefore “no profound emotional hardships.” At least for us, it was not the fault of his autism. Should someone try to correct this misperception of Dr. Insel?

    “Diagnosis: Early diagnosis is critical because earlier interventions are associated with the best outcomes.”

    “Treatment: …NIH-supported randomized, controlled trials of behavioral treatment approaches have shown positive effects, and early behavioral interventions have been found to improve functional capabilities and reduce the severity of challenging
    symptoms.” footnote 4 to: “Rogers, SJ, & Vismara LA, J Clin Child Adol Psychol. 2008; 37(1): 8-38.”

    Anyone in a position to comment?

    “Additionally, NIH has supported double blind randomized controlled trials of pharmacological treatments. For example, the atypical antipsychotic medication risperidone was shown to be better than placebo for reducing aggression, self-harming behavior and other serious behavioral problems, without impairing the cognitive skills of children with ASD.” footnote 5 to: “Aman MG, Hollway JA, McDougle CJ, Scahill L, et al. J Child and Adolesc Psychopharmacol. 2008 Jun; 18(3): 227-236.”

    Anyone in a position to comment?

    “In summary, ASD is a developmental disorder that affects too many families; research represents our best hope for making a difference for them. We at NIH are determined to continue to use the best available tools, to fund excellent and innovative science, and to encourage input from–and dialogue with–parents, teachers and individuals with ASD. Only in this way, and only with your continued support, will we be able to continue to fuel the vital research that we believe will reveal the mysteries of ASD and lead to prevention and effective treatments.

    “PREVENTION”?!?

    However, what may be most important is what Dr. Thomas Insel did not state.

    Arthur Golden

  37. Tom Smith October 30, 2009 at 19:02 #

    Thanks Art for bringing some substance to this thread. The vaccine issue has been the horror of the autism community for over 15 years. It’s time for the vaccine people to put on their halloween costumes of witches and fly off in the night sky . I couldn’t resist. That said, I acknowledge that the vaccine people are for the most part good and sincere people…they’re just wrong.

    The issues of medication, cure, mental illness, behavioral intervetniions… early or late vis a vis autism, and Dr Insel’s positions, are critical if we are to move forward in autism in a positive and effective way. Accurate diagnosis is a must and much research needs to be done there. It shouldn’t be assumed that autism is either a mental illness or even that autistics are prone to mental illness. It’s my view that, for reasons I can’t explain, autism is resistant to mental illness. It’s a huge mistake to make behaviorism the treatment model of choice in autism as it is and has been for well over 30 years. Early intervention is not only ineffective, it has major negative consequences for autistics both short and long term. Communication should be the primary focus in treatment and we now have ways to accomplish this goal through supportive and indedpendent communication modalities. Skill training will be more effective once a comprehensive communication program is in place. This also makes it more likely that total independence in autism may emerge. The same applies to medication. The need for it vanishes once a good communication program is in place. How do I know all of this? I worked n residential treatment for most of the past 40 years and we accomplished all of our goals in treatment by the early Nineties with severe adult male autistics. The same happened in other treatment environs with a comprehensive communication program.

    What we discovered in those programs was that severe autism was NOT symptomatic of retardation but genius. Autism is a motor condition as well as a heightened sensory condition. There are important and obvious differences between autistics and so called normals but much more in common. The differences are not a disability but a strength. What makes their differences a disability is our inability to accommodate them. By the Early Nineties we learned how to do that. Now it’s time to use what we learned. Everyone will benefit once we do.

Trackbacks/Pingbacks

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