Autism Reality Check: Where Are The IACC Results?

I have previously written about the importance of the IACC and in a 2009 blog comment expressly thanked the IACC for its role in advancing autism research.  With the passage of 3 years though I have  become a less enthusiastic IACC booster.  Both the Canary Party and the Elizabeth Birt Center for Autism Law and Advocacy (EBCALA) have called for an accounting from the IACC and its leadership. I support their calls for accountability.  

Autism advocate representatives on the committee have been anti-cure ideologues while autistic persons seeking cure like Jonathan Mitchell are ignored in every sense of the word.  The IACC, despite paying lip service to gene environment interaction has for the most part continued to subscribe to the "it's gotta be genetic" belief system for explaining what causes autism. 

During the IACC existence, and during the 14 years since my son's autistic disorder diagnosis,  autism diagnosis rates have literally exploded. Yet the IACC makes no serious effort to address this burgeoning rate and allows the public to believe the tired, repetitive, and unsubstantiated excuses that every single reported increase in autism is due entirely to mid 90's diagnostic definition changes, enhanced awareness and diagnostic substitution motivated by parental desire to obtain all those wonderful autism services that apparently exist in every school district in the US.

I am not anti-IACC but I do believe there should be some accounting provided.  As the Autism Gadfly Jonathan Mitchell has said non-Americans, including Canadians like me, have no right to DEMAND anything from an American taxpayer funded institution but the IACC has an important role to play in autism research and, like many US institutions, has a world wide impact.  As a Canadian autism dad I ask the IACC to provide a real world accounting of its efforts.  Are we any closer to understanding autism causes? Will the IACC continue to politely ignore the environment side of the gene environment base of autism disorders?  Will we actively direct our research towards cures and treatments?

If I have been too one sided I invite anyone reading this blog, including the academics and researchers who occasionally humor this autism dad with a visit to my blog, to please provide examples of real world results achieved by the IACC or indicate where the IACC is going and whether it still hopes to find causes, cures and treatments for the increasingly diagnosed autism disorders.

Autism Rising, Environmental Causes of Autism Disorders, and the Top Autism Interview of the 2000-2009 Decade

The autism interview of the decade, from the perspective of this father of a severely autistic 14 year old boy seeking real answers and future directions concerning my sons Autistic Disorder,  is the David Kirby interview with Dr. Tom Insel in December 2009. There are many contentious debates in discussions of autism disorders including the debate over whether the startling increases in rates of autism diagnoses over the past decade from 1 in 1000 to 1 in 500 to 1 in 110 reflects a real increase in autism or whether they are attributable entirely to the diagnostic  manual changes in the early 1990's combined with increased awareness and the alleged existence of autism services motivating parents to seek autism diagnoses.  Tied directly to this issue is the question of whether autism is caused entirely by genetic factors or whether environmental factors are also involved.

David Kirby's recent interview with Dr. Tom Insel, head of the IACC, and not known to be a celebrity actress, an anti-vaxxer or an hysterical, rage filled parent of a child with an autism disorder,  sheds much light on these issues. I encourage everyone, including reporters and journalists with Mainstream Media outlets and anti autism cure Neurodiversity ideologues like Obama disability nominee Ari Ne'eman, to read the transcript of the Kirby interview with Dr. Insel in its entirety.  Some important points made by Dr. Insel in that interview:

"So how much of the doubling or - in this case tenfold increase over a decade - how much of it is related to change in diagnosis, how much to ascertainment? It looks like about 24 percent of the California increase can be attributed to something like a change in diagnosis criteria. They are beginning to use multiple diagnoses. So that children before, who were listed simply as mentally retarded rather than autism - but they had both - are now logged in with both. But that really caps out at around 24 percent. There’s probably another piece of this, which globally could be attributed to ascertainment. But that caps out at around 16 percent, or something like that. And when you put all of that together, you are still well below explaining 50 percent of the increase.

So what does that mean? It means that, as far as I can tell, the burden of proof is upon anybody who feels that there is NOT a real increase here in the number of kids affected." 

...

This tells you that, you really have to take this very seriously. From everything they are looking at, this is not something that can be explained away by methodology, by diagnosis. Some piece of it can, but the whole thing can’t.

...

 Yes. I don’t think anybody is arguing that it is 100-percent genetic. I mean, I think that there are just a lot of questions that this raises. And I don’t think in those terms, exactly, that it’s either genetic or it’s environmental. From my perspective, it’s almost always going to be both. And the only question is: How do you nail down this interaction, how do you go after it?

...

There is no question that there has got to be an environmental component here. The problem for us has been trying to find the right way to get our hands around it, and to identify what that is most likely related to." 

The acknowledgements by Dr. Insel, head of the Interagency Autism Coordinating Committee, (1) that autism is really increasing and (2) that there is an environmental component to that increase are huge developments in our attempts to understand autism disorders and what is causing them. The assumption for over a decade has been that autism is 100% genetic and that none of the autism increase is real.  Funding of autism research has reflected those twin assumptions.  Now is the time to face autism reality, to start researching and understanding the interaction of genetic and environmental factors that cause and contribute to autism disorders. With the knowledge gained from understanding what causes autism disorders we will be much better able to identify treatments and cures to help those afflicted by these serious disorders.

David Kirby's December 2009 interview with IACC Director Tom Insel easily ranks as the top autism interview of the 2000-2009 decade ... in the opinion of this humble father of a son severely affected by Autistic Disorder. 

Autism Rising? Dr. Eric Fombonne Says Yes It Is

Despite the recent figures from the CDC revising autism prevalence rates upward from 1 in 150 to 1 in 110 die hard deniers of the existence of an autism epidemic refuse to acknowledge the obvious.  One of the most stubborn deniers is Kev Leitch at LBRB a Neurodiversity driven "autism" blog. 

In a recent lbrb post  denying the reality of the increasing rates of autism disorders Kev clings to the 1994 diagnostic changes and to social and ascertainment factors.  He does so even though Dr. Tom Insel, head of the IACC, has recently stated that studies can only attribute slightly less than 50% of the startling rates of increases to such diagnostic and ascertainment factors. The onus, according to Dr. Insel, is on those who would deny that autism is actually increasing to make their case.

Kev's diagnostic and ascertainment factors accounting for less than 50% of the autism increases what is left? Well Kev drops a few names without much explanation.  One of the names he drops, somewhat curiously is Dr. Eric Fombonne.   What makes Kev's reference to Dr. Fombonne so curious is that the good Doctor has previously indicated that autism actually is rising and quite dramatically.  He did so in the context of "debunking" claims that the mercury based preservative thimerosal used in vaccines (including recently in the H1N1 vaccines) does not cause autism disorders (as reported by Scripp news) :

"One of the main pieces of evidence against the vaccine theory, Minshew said, is that thimerosal has been banned from most childhood vaccines in America since 2001, and yet reported autism rates have continued to increase.Dr. Eric Fombonne, an autism researcher at McGill University in Montreal, has an even more telling example of that. In Quebec, children who got vaccines from 1987 to 1991 had about half as much mercury exposure as those in the United States; from 1992 to 1995, they had the same amount; and from 1996 on they had no exposure at all because mercury preservatives were removed. Yet the autism rates in Quebec increased steadily through that entire period, and actually went up faster after the mercury was eliminated."

I do not know if Dr. Fombonne is correct in stating that mercury was removed from all Quebec vaccines or not.  What is relevant for Kev's argument  who cites Dr. Fombonne as an authority for the view that autism is not really rising is the fact that well ... Dr. Fombonne has argued exactly the opposite in trying to prove that mercury based thimerosal in children's vaccines has been exonerated as a cause of autism disorders.   If the increase in autism diagnoses relied on by Dr. Fombonne in defending thimerosal was not a real increase, if it was due entirely to diagnostic and social factors, then Dr. Fombonne's thimerosal defence would be destroyed.

The factors cited by Kev Leitch and other autism epidemic deniers do not account for more than 50% of the autism epidemic. Name dropping of experts like Dr. Fombonne  does not change that fact. Especially when they themselves have publicly relied on real autism increases in arguing against thimerosal as a factor causing autism disorders.

Autism is rising and it is long past time that we started doing the research to find out why.

autism

Autism Events of 2009 - The Good, the Sad and the Ugly

As we turn towards 2010 these are AutismRealityNB's autism events of the year:

The Good 

Public authorities begin to acknowledge the extent of the autism crisis and the role of environmental factors.

1) In an historical development  IACC director Dr. Tom Insel acknowledged that environmental factors are a component of autism. 


2) The CDC estimated that between about 1 in 80 and 1 in 240, with an average of 1 in 110, children in the United States have an Autism Spectrum Disorder.


3) The CDC estimated that   29.3 to 51.2% of children with Autism Spectrum Disorders  also had an Intellectual Disability.  (That estimate itself misleads by including Aspergers with Autistic Disorder in estimating ID prevalence "on the spectrum"). The percentage of persons wih Autistic Disorder and  Intellectual Disability is approximately 75-80%. 

The Sad

4) Autistic Children continue to wander from their homes, some to perish as did young James Delorey of Nova Scotia. The autistic Nova Scotia boy left his home  prior to the onset of a bad winter storm.  Although he survived the storm initially, he suffered extreme hypothermia and died shortly there after. 

The Ugly 

5)  US President Barack Obama nominated to a national disability council a young University student with Aspergers Disorder who has held conflicting and ambiguous views on whether autism disorders are disabilities, has opposed curing autism and has organized protests of  events held to raise funds to benefit autistic children including funds for autism research. 

6) The Mainstream Media fawned over the anti-autism cure University student with Aspergers, and promoted his agenda, while failing to note that the protests he organized drew only a handful of protestors and that some other persons with Autism Spectrum Disorders disagreed with his anti-cure positions. The same mainstream media failed to note that families  trying to cure their own autistic children, many of whom are much more severely affect by Autistic Disorder and Intellectual Disability than  the anti-cure University student with Aspergers, are trying to help their children live the fullest, most rewarding lives possible.

autism

The Purely Genetic Model of Autism and My Westmorland Street Bridge Knock Out

Yesterday I suffered a concussion. While taking pictures I slipped and fell and was knocked out for a few minutes on the Westmorland Street Bridge in Fredericton . I had received a very good whack on the back of my head.  On coming to I immediately checked ... my camera was OK. After walking further to the Second Cup  for a coffee I called home and Heather recommended I get checked out at the DECH, the Doctor Everett Chalmers Hospital, which I did. The pictures above are of the WS Bridge and some of the pictures   I took immediately before my fall.

Today, with a slight headache,  I was thinking about the incident and while I was knocked out I don't think I suffered any great damage. Another person though, not blessed with such a thick skull, might have suffered more serious injuries.    My fall on the bridge makes me think again of the view that autism is purely genetic, the view that has dominated autism research funding models and neurodiversity  autism ideology over the past decade. It is a view which excludes any reference to external, environmental factors in causing or triggering autism.  Autism is inherited, end of story.

According to the "it's gotta be genetic" mindset  no external factors be they vaccine ingredients, power plant emissions, drinking water contaminants, plastics components, or the ingredients in the children's toys and jewelry that are all around us could possibly be involved in causing autism disorders. This grand assumption flies in the face of the fact that in some cases an identical twin will have an autism disorder while the other does not. It flies in the face of the fact that  people are genetically and biologically different in their ability to absorb external shocks.  One guy can take a punch, even a knockout,  and get back up and fight, or play hockey or football, another is out of the game. One guy can slip on ice and be rendered unconscious but get up and be none the worse for wear beyond a good headache the next day. Another might not recover so well.   One child has a preexisting mitochondrial disorder that renders her vulnerable to vaccine delivered shocks, another does not.

That "it's gotta be genetic view" of autism identified by Teresa Binstock 10 years ago is slowly giving way to the more likely and common sense based view that autism, like most conditions in life, good or bad,  results from the interaction of genetic and  environmental factors.  Even the IACC and Dr. Tom Insel are grudgingly beginning to acknowledge that likelihood and to acknowledge the need for increased funding of environmentally focused autism research.

We have reason to hope that the "it's gotta be genetic", frozen view of autism  will soon  be thrown off the research funding bridge ... or at least suffer a serious slip and fall. Hopefully 2010 will be the year that   environmentally focused autism research gets up on its feet and we begin to understand all the factors that cause or trigger autism disorders.

autism

Autism Blog Disgrace: lbrb Continues Hypocritical Mudslinging

lbrb is a disgrace.

The blog site which defines mudslinging in the autism blogosphere is continuing its disgraceful hypocrisy by slinging more mud while howling about alleged mudslinging by what it calls the "vaccines cause autism consortium" ... SafeMinds, Generation Rescue, the National Autism Association, Talk About Curing Autism (TACA.)

In The war on Tom Insel and the IACC lbrb throws mud at these groups because they criticize Dr. Tom Insel and the IACC. This is the same Dr. Insel who has has, amongst other gems, informed Senator Harkin's committee that an observational study of autism rates amongst existing vaccinated and unvaccinated populations could not be done. Dr. Insel's testimony is contradicted by public statements by former NIH head Dr. Bernadine Healy and former CDC director Dr. Julie Gerberding, both of whom have stated that such an observational study could and should be done. Even Dr. Duane Alexander, a member of the IACC, has stated publicly that such a study could be done.

In the topsy turvy world of lbrb criticizing Dr. Insel for his dubious testimony before Senator Harkin's committee, for his flippant dismissal of increased estimates of autism diagnoses, his machinations on the IACC to shelve the proposed comparative study amounts to mudslinging. But all the name calling by lbrb is not?

Somewhere in the minds of the lbrb crew there is probably some logic, some consistency, some principle to be found but the world will need a very complex road map to find them.

lbrb is fully engaged in its own war .... a war on reality.

autism

List of Excuses for Recent Autism Rate Increase - Add Your Own

The incidence of autism spectrum disorder in eight-year-olds in the U.S. has risen by 50% since 2007, from one in 150 to one in 100, according to a CDC report that will be released later this year. However, the higher rate might not mean that more U.S. children have autism spectrum disorder, but instead that physicians' ability to detect the disorder is improving, according to Tom Insel, director of the National Institute of Mental Health.

California Healthline, October 5, 2009

It was completely predictable.

As soon as word began to circulate that studies announcing an increase in autism diagnoses from 1 in 150 to 1 in 100 or is it 1 in 91 you had to know that the usual excuses would be trotted out so that health authorities could continue to deny that there actually is an autism epidemic.

1. The 1994 DSM definition changes are STILL being used to explain a 50% increase in autism rates between 2007 and 2009.

2. Increased social awareness.

3. Alleged availability of autism services. Autism diagnoses provided so that patient can obtain autism services.

4. Greater ability to detect autism. Thank you Dr. Tom Insel.

If anyone has any other excuses being used to deny that autism is really increasing despite a 50% increase in two years feel free to offer them for this list. Maybe it is time to stop conducting such surveys if the people who actually provide the surveys and studies do not take them seriously.

autism

Offit and Insel Fear Real Vaccine Autism Research

I am a neutral in the vaccine autism war. I have NOT concluded that vaccines or their ingredients cause, or trigger, autism but I do believe that the claim that science has conclusively proved that there is no vaccine autism connection does not hold water. I am also increasingly puzzled by, and concerned by, the opposition of the IACC and persons like IACC head Dr. Tom Insel and vaccine inventor and consequent multimillionaire Dr. Paul Offit, to conducting an observational study comparing autism rates between vaccinated and existing non vaccinated population groups.

The criticisms of the studies cited in support of the position that a vaccine autism link has been conclusively disproved by science have been covered elsewhere in detail and are well known. The most obvious example is the Danish study, conducted after prodding by US health authorities, which examined autism rates from 1972 to 2000 with the diagnostic and social changes that took place over that time period, including the addition of different population groups to the Danish database during different years. The study authors themselves stated that the study did not prove a negative vaccine autism relationship.

The most serious flaw in the position that science has disproved any possible vaccine autism connection is that NO studies have compared autism rates between vaccinated and non vaccinated population groups. What is most surprising is that people like Dr. Paul Offit and Dr. Tom Insel, especially Dr. Insel, oppose such a study. Given their opposition to such a study, and the lack of a persuasive rationale for their opposition, it is difficult not to conclude that the good Doctors Offit and Insel are afraid of what such a study might show.

Dr. Bernadine Healy, former NIH head, has stated that the epidemiological studies relied upon by authorities to argue against a possible vaccine autism connection are not specific enough to address the effects of vaccines on vulnerable population subsets. She has also argued that an observational study comparing autism rates amongst vaccinated and existing non vaccinated groups COULD and SHOULD be done. Dr. Julie Gerberding, until recently the CDC head, also has stated that the observational comparative study could and should be done. Even Dr. Duane Alexander of the recalcitrant IACC has stated that the observational comparative study could be done.

Teresa Binstock noted in 1999 that funding was available for autism research only if the research proposal examined genetic bases of autism, the "its gotta be genetic " model. In 2004 the IOM expressly discouraged funding of vaccine autism research. Today parents and professionals, as predicted by Binstock, are vilified in the mainstream media (and by attention seeking bloggers like Orac) for even discussing the possibility of a vaccine autism connection. Dr. Paul Offit has been waging an increasingly emotional campaign for several years as a result of which parents are marginalized and dissident professionals are branded as dangerous. Dr. Insel's IACC engaged in agenda and procedural games to reverse its own decision to examine vaccine autism research and the good Dr. Insel testified somewhat bizarrely in front of Senator Harkin's committee that an observational comparative study could not be done.

Substantial sums of money have been poured into genetic based autism research over more than 10 years based on the "its gotta be genetic" funding mindset identified by Teresa Binstock, with no hope of finding cause or cure from such research. It seems very weak to suggest that some of that funding could not be diverted to funding an observational comparative study of vaccinated and non vaccinated groups.

The only reasonable conclusion left to be drawn is that Dr. Tom Insel, Dr. Paul Offit, and other public health authorities who refuse to consider funding of an observational comparative study, are afraid of what the results of such a study might show - that non vaccinated groups have significantly lower autism rates than vaccinated groups.

autism

Vaccine-Autism War Will Never End Unless Comparative Autism Research Is Done

The performance by Dr. Thomas Insel before US Senator Harkin's Senate committee recently did nothing to end the vaccine-autism war. The head of the IACC took absolute, black and white positions on the key issues which mark the vaccine-autism war. His performance has been critiqued by Katie Wright at Age of Autism. What I found most startling was Dr. Insel's assertion that a comparative study of vaccinated and unvaccinated populations could not be done for ethical reasons.

That is obviously true with respect to experimental studies but observational studies of existing unvaccinated and vaccinated populations could be done and autism rates compared. Dr. Bernadine Healy, Dr. Julie Gerberding and Dr. Duane Alexander have all said that such studies could be done. It is time to fund the comparative study and help bring the vaccine-autism war to an end.

The argument is made though that it would be difficult to conduct such a study because of the logistics involved as well as challenges presented by the lack of controls present in such a study. Personally I don't believe that such a study would actually be that difficult. It is essentially a survey method not substantially different than the epidemiological studies involving completely vaccinated populations relied upon by Dr Insel and others in their at times emotional assertions that a vaccine autism link has been disproved.

Even if it would be difficult to conduct an observational study comparing autism rates amongst existing vaccinated and unvaccinated populations ... so what? Dr. Paul Offit and the mainstream media have been involved in an unrelenting campaign to end the vaccine autism war, by marginalizing, browbeating and intimidating concerned parents into vaccinating their children. The bullying method has not worked. There is still suspicion, given the anecdotal evidence, which is still evidence whether any one wishes to admit it or not, of many parents who testify that their children regressed into autism after being vaccinated.

To say that such anecdotal evidence does not prove causation is fine but observational, anecdotal evidence is still evidence even if it is not conclusive evidence. The real issue is that public health authorities have not proved to the satisfaction of concerned parents that the numbers of children showing regression into autism after vaccinations is in fact just a coincidence. Many concerned parents, and some reputable health care professionals have called for the observational studies comparing autism rates between unvaccinated and vaccinated populations to be done.

If Dr. Insel and the IACC do not fund an observational, comparative study of unvaccinated and vaccinated populations they will fail to persuade those who do not subscribe to their religious like faith in the safety of vaccines. Their continued opposition to conducting such a study will itself create more suspicion around the possible role of vaccines in causing autism disorders. If Dr. Insel and the IACC do not fund such a study they will fail to persuade the very people they are seeking to persuade.

It is time to study, without pharmaceutical industry ties, the autism rates amongst existing vaccinated and unvaccinated populations. If this is not done there will be no end to the vaccine-autism war and Dr. Insel and others on the IACC can accept their fair share of blame for that result ... for the continued reluctance of some parents to vaccinate their children.

autism

Autism Research Leadership: Katie Wright Rips the Interagency Autism Coordinating Committee and Dr. Tom Insel

Katie Wright has written a hard hitting piece,"Can You Hear Me Now?", on the role of the IACC and Dr. Tom Insel in preventing funding of meaningful vaccine autism studies including the comparative study of vaccinated and unvaccinated populations. The article was written for SafeMinds and reprinted with permission at Age of Autism. Ms Wright calls for Secretary Sebelius "to investigate Dr. Insel’s actions and reinstatement of vaccine objectives that were removed under false premises in January from the IACC’s Strategic Plan. "

It will be interesting to see whether President Obama and Secretary Sebelius respond to the SafeMinds/Katie Wright request. Given Secretary Sebelius statements about the safety of the as yet untested Swine Flu vaccine and thimerosal it does not seem likely that the Obama administration will conduct a critical examination of the IACC and Dr. Insel's leadership on vaccine and autism issues.

autism