Dr. Tom Insel's Shameful DSM Retreat

Left - Transforming Diagnosis Insel


Right - NIMH Is Not Abandoning the DSM Insel.

In Transforming Diagnosis NIMH Director Thomas Insel said that the DSM was invalid, based on an antiquated system of diagnosis and .... patients deserve better.   Then he retreated, tried to hide and claimed that people were misrepresenting the Transforming Diagnosis article, that the NIMH was just talking about research not clinical practice. Last I checked Diagnosis is a key part of a medical clinical practice. If you are talking about participants or subjects you are talking about research.  If you are talking about patients who deserve better you are talking about clinical practice.  If you say that the DSM is invalid and antiquated you are not supporting the DSM, you are blowing it up.

You can run Dr. Tom but you can't hide.  Your words, your Transforming Diagnosis article are out there in the public domain.  Patients deserve a medical diagnosis based on research.  You said it and I believe it.  I don't believe the excuses offered in your shameful retreat.

NIMH Director Thomas Insel: Study Finding Environmental Role in Autism in Line with Other Recent Observations

"These new findings are in line with other recent observations supporting both environmental and genetic contributions to ASD, with the environmental factors likely prenatal and the genetic factors highly complex and sometimes not inherited" 


NIMH director Thomas R. Insel, M.D. 

The recent twins study led by Dr. Joachim Hallmayer and Neil Risch, Ph.D., has grabbed the attention of the world's media and shaken the "autism is genetic" mindset that has dominated autism research for many years.  The reaction to the study by the autism is primarily genetic research establishment has been quick and fearful. Within just a few days attempts were underway to diminish the study design and the outcomes of the study.  Portraying the study as controversial when it is anything but is the most obvious sign of desperation by the autism is genetic establishment. 

Such efforts should be taken with a huge grain of salt and the words of Dr. Insel remembered: the autism twins study results are "in line with other recent observations supporting both environmental and genetic contributions to ASD, with the environmental factors likely prenatal and the genetic factors highly complex and sometimes not inherited."

Synaptic Disorder Instead Of Autism Spectrum Disorder?

The word "Autism" has become romanticized, occasionally glorified, in public discussions of the neurological disorder. It is literally being stripped of its meaning as a diagnostic label of a mental disorder and is being turned into a different way of thinking, a way of life, a culture. Maybe it is time to start thinking about dropping the use of the term autism in the DSM, abandon the Autism Spectrum Disorder concept and replace it with a more informative, less romanticized, less politicized  name ... Synaptic Disorder.

At its most extreme the glorification of autism spectrum disorders has seen historical talents and geniuses from Mozart to Einstein "diagnosed" long after their deaths as  having been "autistics". One of the silliest of such fantasies is the speculation that Jesus Christ was autistic. At the other end of the stigma spectrum are those aided by the American Psychiatric Association, and its dilution of the concept of autism disorders in the DSM-IV,  who want the world to believe that autism and intellectual disability are unrelated conditions that are "coincidentally" present in 75-80% of those with Autistic Disorder and between 40 and 50% of all persons with autism spectrum disorders. 

Maybe it is time to consider abandoning use of the term "autism" altogether and replace it with a new, more informative, and less politicized term .... synaptic disorder.  In his December 2009  Simons Initiative on Autism and the Brain Lecture at MIT, "Autism, What Do We Know? What Do We Need?",  Dr. Thomas Insel, Director of the National Institute of Mental Health (NIMH) acknowledged that autism is not fully explained by genetics. It is also necessary to consider environmental factors ( a point made 10 years earlier by Teresa Binstock and emphasized by many autism authorities including Dr. Irva Hertz-Picciotto).  Dr. Insel also discussed the matter of how we describe autism disorders and whether we are talking about these disorders in ways that are helpful to understanding them biologically as summarized on the MIT World review of his lecture:

"The formal definition of autism includes three main components: deficits in social behavior, abnormal language, and repetitive or restricted (motor) behaviors (hand flapping, for instance). But it can also include a host of other associated features like seizures, mental retardation, GI disorders, dysmorphic appearance, and regression.

Insel compares talking about autism as a single disorder to talking about epilepsy or fever or chest pain as a single disorder. Discussions must include understanding details at many levels—genetic, environmental, cellular, behavioral, systems. While researchers may now increasingly refer to autisms (plural) or think of the disorder along a spectrum, these categories may cause more problems in getting to the underlying biology of the disorder. Current research suggests that autism is a developmental brain disorder, specifically a disorder of synapses." (Bold emphasis added-HLD)

Given Dr. Insel's view, as Director of the NIHM, speaking at MIT, that autism is a synaptic  disorder  would  it not be prudent for the DSM-5 team to hold off on  another transformation of the pervasive developmental disorders, already spoken of as autism spectrum disorders, until the research confirms (or refutes) the view that autism is a disorder of synapses?  Dr. Insel has indicated that describing autism as a disorder of synapses, synaptic disorder, may be more helpful in getting to the underlying biology of the disorder.

Synaptic Disorder instead of Autism Spectrum Disorder? Surely it should at least be considered by the American Psychiatric Association  as it once again revises the DSM. 

Denials Do Not Explain Autism Epidemic, Environmental Factors Must Be Researched

If any disease or disorder saw startling increases from 1 in 500 to 1 in 110  in just over a decade it would be taken seriously. Unless of course the disorder in question is autism where a significant number of professionals  are joined by Neurodiversity ideologues in denying  the existence of an autism epidemic. The deniers hold religiously to their beliefs without an explanation for much of the startling increase in autism diagnoses.

The autism epidemic deniers rely heavily on the 1994 change in autism diagnostic criteria and definitions, diagnostic substitution, increased autism awareness and other ascertainment factors. While there is no dispute that these factors play substantial roles in accounting for the upswing in autism diagnoses they only account for approximately 50% of the increase in autism diagnoses, leaving 50% of the increase unexplained. Given the startling rise in autism diagnoses 50% of that increase represents in itself a startling increase. Yet the deniers blithely assure the world that there is no real increase in autism diagnoses.

The view that 50% of the increase in autism diagnoses is unexplained by diagnostic change, substitution and ascertainment factors  can not be pinned on  a celebrity actress or holistic doctor frowned upon by the "scientific community". Doctors Novella and Gorski and Neurodiversity ideologue Kev Leitch can not use "scientific" terms like "woo" and "quack" to dismiss  the opinions of Dr. Thomas Insel, director of the Interagency Autism Coordinating Committee, who  has stated in an interview with journalist David Kirby that 50% of the autism diagnoses increases reported in the California study is unexplained by  diagnostic change and ascertainment factors:

"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. Because all of the evidence we have up until now says that, well there are what we could call – I wouldn’t call them ‘trivial’ factors – but they are factors that are not related to incidence, but would be simply related to prevalence, like ascertainment. But they don’t really explain away this huge increase.

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.""      [Bold highlighting added. HLD]

Having rejected the diagnostic and ascertainment factors as complete explanations for the increases in autism diagnoses Dr. Insel then went on to reject the theoretical basis of autism epidemic denial, the assumption that autism disorders result entirely from genetic factors and the fervent belief that environmental factors do not play a role in causing autism disorders:

"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  ...     in the last few months, or maybe year, we’ve begun to develop the tools that will allow us to get at this. And these tools are from this whole emerging field of epigenetics, or epigenomics.   And in this case you are not looking at genetic sequence - which is what we’ve been doing for the last decade - but you’re looking at how the DNA is bound up with all kinds of proteins. That is largely affected by experience, or by environment. Some of it is probably hardwired, but a lot of it has to do with exposures, particularly early in development but even, as we are learning, even after birth

So what we are really excited about here, I think, is to be able to use these new tools. And what has only happened in the last month or two is the first whole genome epigenetics effort, where we have been able to say, ‘We can map this entire aspect of genomic biology, and it tells us what someone’s exposure history might have been.’ It shows you effectively, or we are hoping it will show us, where the scars might be from early exposures."

The near 100% focus on genetic based autism research over the last decade, referenced by Dr. Insel, was identified by Terersa Binstock in 1999.  That focus has resulted in little research of the environmental factors involved in causing autism disorders.  The failure to study possible environmental factors in causing autism has allowed autism epidemic deniers to claim that there is no evidence of environmental factors in causing autism, that autism is entirely genetic and that there is therefore no autism epidemic since a purely genetic disorder would not show dramatic increases in such a short period of time.

Given the recent CDC data, and given the emerging scientific view reflected in IACC Director Insel's statements in the Kirby interview it appears time is now running out for the autism epidemic deniers. 

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IACC Head Says No Question Environment Is a Component of Autism

David Kirby's recent interview with Dr. Thomas Insel of the Interagency Autism Coordinating Committee is quite possibly the autism interview of the decade, one that will be referenced in future histories of autism.

Kirby interviewed Dr. Insel after the release of new CDC data showing yet another stunning increase in autism rates to 1 in 110. In Dr. Insel on Rising ASD Numbers: “No Question” About Environmental Factors  Kirby quotes a very candid Dr. Insel  about the role of environmental factors in causing autism:

"there is no question that there has got to be an environmental component here."

That statement is a huge development in in the history of autism research. It marks the official  end of the "it's gotta be genetic" mindset of autism research identified 10 years ago by Teresa Binstock.

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End the Vaccine-Autism War Now: Do The Comparative Study and Quit Demeaning the Parents Who Actually Care for Autistic Children

The vaccine-autism war has continued unabated, primarily because of the actions of Dr. Paul Offit, Dr. Thomas Insel and the IACC. It will continue until a credible observational study comparing autism rates in vaccinated and unvaccinated populations is done.

The IACC ventured near a possible end to the war when it contemplated doing an observational study comparing autism rates in vaccinated and unvaccinated populations. Instead, under Dr. Insel's direction, it engaged in procedural shenanigans to take the option off the table, aggravating hostility and suspicion amongst those who observed the onset of autism symptoms in their children after vaccination.

Dr. Insel added to the mess by informing Senator Harkin's committee that such a study could not be done. Dr. Bernadine Healy, former head of the NIH, and Dr. Julie Gerberding, formerly of the CDC, have both stated that the observational autism study could and should be done. Dr. Duane Alexander has also stated that such a study could be done.

Dr. Paul Offit signaled that it was OK for the media to heap scorn on vaccine concerned parents when he painted himself as a martyr and began a crusade to silence any criticism or questioning of vaccines. Now mainstream media and bloggers, including alleged science bloggers , routinely demean and admonish the people who are actually helping autistic children ... their parents. In doing so they are hurting those same autistic children and elevating hostilities in the vaccine-autism war.

It is parents, not Dr. Paul Offit, who actually do the day to day caring for autistic children and who represent their children's interests. In telling these parents to sit down and shut up, in mocking these parents, the "vaccines above all else crowd" are in fact signaling their contempt for the role of the family, the role of parents, in caring for and raising children.


The IACC can continue to sit by and hope that the current Offit inspired media offensive against parents of autistic children who question whether vaccines caused or triggered their child's autism will silence those parents. It is a false and futile hope. Not because these parents are inherently stubborn but because they require more than condescension , flawed, conflicted, statistical massages, and trite cliches (correlation does not imply causation) before they will be persuaded.

If the IACC wants to end the vaccine-autism war it will recommend funding to do the comparative study called for by Dr. Healy and Dr. Gerberding and have it done by credible, conflict free, research authorities. The more the IACC resists calls for such a study the more it will appear it has something to hide. If it wants the vaccine-autism war to continue it will refuse to conduct the study.

It's that simple.

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Autism Is Rising And We Still Don't Know Why

“What bothers us is that we really don’t know why it [autism] is increasing"

Dr. Alexis Reyes, November, 2009

The above quote by Dr. Alexis Reyes, President of the Philippine Society for Developmental and Behavioral Pediatrics, is taken from an article in the Manila Bulletin, Help sought as autism cases rise. Dr. Reyes discusses the rise in US autism statistics from 0.4 to 0.5 per 1,000 in population in the 1960's to 0.71 to 1.1 per 1,000 in 1990 to 1 in 150 a few years ago to current estimates of 1 in 91.

Dr. Reyes' honesty in admitting candidly that autism experts really can't explain the startling increases in autism is unusual and refreshing. Many experts point to the DSM and ICD diagnostic changes in the early 1990's to explain increased reports of autism and couple that with increased social awareness and diagnostic substitution. But the truth is that while it seems obvious that a substantial increase in reported cases of autism would result from such factors, particularly the diagnostic manual changes, it does not seem obvious that those factors explain all of the increase. In particular, no one can honestly say that autism figures are still being revised upwards every two years solely because of social factors and diagnostic changes made 15 years ago.

The truth is exactly as stated by Dr. Reyes, autism is increasing and we don't know why. What Dr. Reyes doesn't state is the reason we don't know why autism is increasing: funding authorities have refused to back research into non genetic causes of factors involved in autism over the past two decades.

Teresa Binstock reported in 1997 that the "it's gotta be genetic" official model of funding autism research precluded research involving environmental factors in autism. Dr. Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher, stated in 2009 that even today "about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones".

Hopefully Dr. Thomas Insel of the IACC and other "experts" charged with recommending which autism research projects get funded and which do not will finally have an awakening, will come to their senses and start funding environmental autism research.

Maybe someday years from now, after the necessary research is finally done, we will begin to truly understand why autism is rising and what we can do to treat and cure the autism disorders that restrict the lives of so many. Maybe ... hopefully.

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Old Standby "Confusing Cause and Coincidence" Excuse Trotted Out in Advance of Adverse Events Following Swine Flu Vaccinations

"Confusing cause and coincidence" has been used by scientists for decades to explain away the onset of autism disorders in otherwise healthy children following vaccinations. The same people do not, however, bother to conduct credible studies to actually rule out a causal relationship in such cases.

Most notably, despite support for an observational study comparing autism rates amongst existing vaccinated and unvaccinated populations from credible sources such as Dr. Bernadine Healy, Dr. Julie Gerberding and Dr. Jon Poling, the IACC, under Dr. Thomas Insel, has engaged in procedural shenanigans and given questionable testimony to Senator Harkin's committee to prevent such a study from being done.

Now, the "confusing cause and coincidence" excuse is being trotted out to explain possible adverse events following H1N1 (Swine Flu) vaccinations BEFORE THEY EVEN OCCUR.

The Telegraph (UK) article People will die after swine flu vaccine - but it's just coincidence, Six people in Britain can be expected to die suddenly after having the swine flu vaccine but it will just be coincidence, researchers have said references a recently published article in the Lancet and contains prophetic gems of wisdom offered by super intelligent researchers to us, the lowly unwashed, who have such difficulty distinguishing between cause and coincidence.

Prof David Spiegelhalter, Winton Professor of the Public Understanding of Risk, University of Cambridge and Co-Director of Straight Statistics, said: "What a fine paper. If millions of people are vaccinated then just by chance we can expect bad things to happen to some of them, whether it's a diagnosis of autism or a miscarriage.

"By being ready with the expected numbers of chance cases, perhaps we can avoid overreaction to sad, but coincidental, events. And why don't we ever see a headline 'Man wins lottery after flu jab'?"

Professor Robert Dingwall, University of Nottingham, said: "The difference between cause and coincidence is difficult enough for specialists to grasp, let alone the wider public.

"However, this paper is very important in spelling out the fact that just because two events happen at the same time, they are not necessarily related. There is a background rate of death, disease and accidents that happen all the time regardless of what medical interventions are going on."

Perhaps Professor Spiegelhalter can explain why we never see headlines like Vaccine Researchers Make Fortunes Successfully Predict Winning Lottery Numbers. And perhaps Professor Dingwall can someday come to believe that we, the great unwashed, drooling, ignorant public do in fact understand the difference between cause and coincidence and that we have heard that argument before in connection with vaccines and autism.

If the learned professor can get his head around that one perhaps he can convince the other members of his club that research confirming or refuting their prophecies would be appreciated by those of us in the Ignorance R Us Club.

Based on prior history of the IACC refusal to conduct credible studies of possible vaccine autism connections I have my own prediction to make: no credible follow up studies to determine actual causes of deaths and other adverse events following Swine Flu vaccinations, including autism onset, will be done by the members of the We Are Smarter Than The Dumb Public Club.

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Autism Research Quote of the Year .... 2003

The increase in the incidence of autism from 1990 on may be attributable to more attention being drawn to the syndrome of autism and to achange in the diagnostic criteria from the ICD-8 to the ICD-10 in 1994. Also, outpatient activities were included in the Danish Psychiatric Central Research Register in 1995 and because many patients with autism in former years have been treated as outpatients this may exaggerate the incidence rates, simply because a number of patients attending the child psychiatric treatment system before 1995 were recorded for the first time, and thereby counted as new cases in the incidence rates.

Madsen et al., Thimerosal and the Occurrence of Autism: Negative Ecological Evidence From Danish Population-Based Data, Pediatrics 2003;112;604-606

The Madsen study above is one of the studies referred to by those who assert that "science" has proven that thimerosal in vaccines does not cause or contribute to autism. The usual reference to this study is that after thimerosal was removed from Danish vaccines in 1992 incidence of autism continued to rise. As the authors themselves pointed out the continued rise in autism in Denmark after the removal of thimerosal coincided with changing diagnostic criteria, increased social awareness and different methods of outpatient recording. It is truly amazing that those who assert that vaccines do not cause autism based on such studies now claim that data showing autism diagnoses increases from 1 in 150 to 1 in 91 during the latter half of this decade, more than a decade after the DSM and ICD diagnostic changes. does not necessarily reflect a true rise in autism for the reasons set out in the Madsen quote above.

Should we not also discount the Madsen study, and the claims that thimerosal has been proven safe, because of diagnostic and social awareness changes? Or should we accept the recent data showing increased diagnoses of autism as reflecting a real increase in autism diagnoses>

Which is it Dr. Insel? And what do you think Dr. Offit?

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Double Standards Applied to Autism Prevalence Data

With the recent dramatic change in estimated autism rates from 1 in 150 to 1 in 91 over just a two year period public health authorities, and Neurodiversity ideologues and pseudo skeptics have pulled out a number of arguments to deny, once again, that autism is rising, that there is a real increase in autism. The arguments used in denying any real increase in autism disorders over the past 2 years, are reruns of arguments used to deny increases in autism for the past 15 years. Very, very curiously, however, the same authorities, the same allegedly skeptical, scientific voices, denying autism increases also point to studies, particularly the Danish studies, using prevalence data reflecting decades of diagnoses from the early 1970's to 2000, a period encompassing drastic changes in diagnostic definition of autism disorders, heightened autism awareness, growth in autism services and increasing ability to diagnose autism.

The change in autism diagnostic definitions in the DSM III-R and DSM IV are trotted out once again 15 years later to deny the reality of autism rising. Increased social awareness is a favorite. And of course there has to be a blame the parents excuse: the alleged availability of autism services has resulted in parents seeking autism diagnoses for their children. Dr. Thomas Insel urged the world to be cautious because, after all, authorities are now better at diagnosing autism. It is not clear how the ability to diagnose autism increased by more than 50% over a two year period or what studies the good Doctor Insel relied on but after all he is the Chair of the IACC ... isn't he? But what are the implications of the unreliability of autism rate information for the vaccine autism studies which relied on such data over a longer period of time?

If all these factors diminish the reliability of a reported increase in autism disorders over a two year period, so long after the DSM III-R and DSM IV revisions of the diagnostic definitions of autism disorders, what are the implications for the vaccine autism studies that relied on increases in autism diagnoses after the removal, or the alleged removal, of thimerosal from vaccines? These studies were conducted using data that actually spanned the period prior to and after the period for which data was obtained. Can the prominent Danish studies still be used to assert that there is no correlation between thimerosal and autism?

The Madsen study (Pediatrics, September 2003) found that there was an increase in reported autism diagnoses after the removal of thimerosal from vaccines in Denmark in 1992. The authors also noted though that:

The increase in the incidence of autism from 1990 on may be attributable to more attention being drawn to the syndrome of autism and to a change in the diagnostic criteria from the ICD-8 tothe ICD-10 in 1994. Also, outpatient activities were included in the Danish Psychiatric Central Research Register in 1995 and because many patients with autism in former years have been treated as outpatients this may exaggerate the incidence rates, simply because a number of patients attending the child psychiatric treatment system before 1995 were recorded for the first time, and thereby counted as new cases in the incidence rates.

The above caution is not mentioned by those who claim that this study disproves a thimerosal autism correlation. Dr. Insel for example did not mention this caution when he appeared before Senator Harkin's subcommittee although he now frequently mentions such factors to downplay the recent reports of a more than 50% increase over a period of just 2 years. Dr. Offit speaks so often in support of vaccine safety that it is difficult to say that he NEVER mentions the caution expressed by the authors of the Madsen Danish study but I have never encountered it in his many high profile media appearances on the subject.

There are many other critical flaws in the studies cited by Insel, Offit and others as proving that there is no autism thimerosal connection, no autism vaccine, connection. They have been addressed at length elsewhere by Generation Rescue and other true skeptics. At this time what is terribly striking to me is the ease with which Insel and Offit and their follower's embrace wholeheartedly the studies which they claim support their no vaccine autism connection even though they suffer from the same factors they cite in denying a real autism increase, perhaps even more so. Conspiracy perhaps but the evidence is not sufficient in my humble opinion. Conflict of interest? Probably. Bad faith? Definitely.

Double standards and hypocrisy take on a serious twist in this story. The failure by Insel and Offit to properly inform parents of the risks associated with injection of potentially damaging substances into their children is justified by reliance on studies flawed by the same factors they point to in denying the existence of real increases in autism disorders.

Autism IS rising OR many of the vaccine autism studies of are of no value whatsoever. Those whose careers and livelihoods depend on denying environmental, including possible vaccine, contributors to autism are growing increasingly desperate but even they can not have it both ways when it comes to assessing autism prevalence.

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Should Dr. Thomas Insel be Replaced as Chair of the IACC, Interagency Autism Coordinating Committee?

It is clear that Dr. Thomas Insel will not permit the IACC to recommend funding of an observational study comparing autism rates of existing vaccinated and unvaccinated populations as called for by many parents and credible health care professionals. He claimed before Senator Harkin's committee that such a study could not be done, contrary to the opinion of many health care researchers including Dr. Alexander on the IACC.

Such a study could actually provide reliable information about the possible role played by vaccines in triggering autism. Dr. Insel has also downplayed the recent studies recently reporting a 50% increase in autism diagnoses over a two year period. This latest information brings the reported rates from 1 in 500 to 1 in 91 over a 10 to 15 year period. Despite this alarming trend Dr. Insel responds with speculation, unsupported by any studies, that the increase could be due to better ability to detect autism disorders.

Should Dr. Insel be replaced as Chair of the IACC, the Interagency Autism Coordinating Committee by someone who would take autism disorders seriously?

Offer your opinion here and vote in the poll on the sidebar of this site.

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Autism Prevalence - Why Wasn't the Research Done?

My son Conor was born in 1996 and received an autism diagnosis in 1998. Since 1996 the estimated prevalence of autism has increased dramatically from 1 in 500 to 1 in 150. A recent study suggests the figure may now be 1 in 100. The UK estimate is currently 1 in 100 with a recent study suggesting a figure of 1 in 58. In the 13 years from 1996 to 2009 though despite this incredible increase in numbers of children diagnosed with autism spectrum disorders there are many who deny the increase is real.

From 1996 to 2009 those who deny the existence of a real increase in autism have used the same speculation to deny the existence of a real increase in autism. They often conclude their denial of a real autism increase with the refrain that more research needs to be done. So why wasn't the research done?

Have public health authorities and researchers not been taking autism disorders seriously? Do they not understand the realities facing children born with autism spectrum disorders, and their families? It is just academic curiosity or the availability of research grants that motivate the necessary research?

1996 BMJ Editorial

Thus there is no firm evidence for or against a general rise in the prevalence of "typical autism" or other autistic spectrum disorders. The impression that there is a rise could be due to a change in referral patterns, widening of diagnostic criteria for typical autism (which are difficult to apply with precision anyway), and increased awareness of the varied manifestations of disorders in the autistic spectrum (especially those associated with higher IQ). On the other hand, there might be real changes in prevalence, locally or nationally, due to temporary or permanent factors. Some recent research on typical autism suggests that complex genetic factors may have a major role in its aetiology.9However, in a minority of cases, mostly comprising people who are severely disabled, other physical causes may be implicated.3 4 It is possible that there are interactions between genetic susceptibility and other physical factors. There is also some evidence that mothers of children with typical autism are of higher than average maternal age.10 If this is a real association, changes towards later childbirth11 might affect the prevalence of typical autism and possibly other autistic spectrum disorders.2003 BMJ Article

2003 BMJ Article

The prevalence of autism, which was apparently rising from 1979 to 1992, reached a plateau from 1992 to 1996 at a rate of some 2.6 per 1000 live births. This levelling off, together with the reducing age at diagnosis, suggests that the earlier recorded rise in prevalence was not a real increase but was likely due to factors such as increased recognition, a greater willingness on the part of educationalists and families to accept the diagnostic label, and better recording systems. The proportion of parents attributing their child’s autism to MMR appears to have increased since August 1997.

2007 BMJ Article

Despite three recent studies showing that the number of diagnoses of autism spectrum disorders has almost doubled in the last seven years to around 1% of children, researchers say that it is still impossible to say whether the rise is due to a genuine increase in the number of new cases or to other factors.

2009 BMJ Group Information Published in the Guardian

How Common is Autism? Doctors once thought autism was rare. But newer studies show it seems to be getting more common. It's hard to say why. This may be just because the newer studies have been better at finding children with autism. Or it may be because the way doctors define autism has got wider. We need more research before we can say for sure what's causing the increase in autism.

2009 University of California Davis Study

The 2009 University of California Davis study The Rise in Autism and the Role of Age at Diagnosis is one of the first major studies to suggest that the rise in autism diagnoses may reflect a real increase in autism diagnoses. The authors of that study, Irva Hertz-Picciottoa and Lora Delwiche, also indicate that more research needs to be done:

"In summary, the incidence of autism rose 7- to 8-fold in California from the early 1990s through the present. Quantitative analysis of the changes in diagnostic criteria, the inclusion of milder cases, and an earlier age at diagnosis during this period suggests that these factors probably contribute2.2-, 1.56-, and 1.24-fold increases in autism, respectively,and hence cannot fully explain the magnitude of the rise in autism. Differential migration also likely played a minor role, if any. Wider awareness, greater motivation of parents to seek services as a result of expanding treatment options, and increased funding may each have contributed,but documentation or quantification of these effects is lacking. With no evidence of a leveling off, the possibility of a true increase in incidence deserves serious consideration. One approach to this question would be a rigorous investigation to determine incidence or prevalence in 20- to 30-year olds. If there has been no true increase and no individuals who were cured or outgrew their diagnosis, then the application to adults of criteria equivalent to those being used today in children should find, for each previously identified autism case, 4 to 8 undiagnosed cases. Whatever the final determination with regard to overlooked cases of autism in the past,the current occurrence of autism, a seriously disabling disorder in young children, at rates of greater than 30 per 10,000individuals — and still rising in California—is a major public health and educational concern.

In 1999 Teresa Binstock, a Researcher in Developmental and Behavioral Neuroanatomy, pointed out that funding was generally available for genetic based autism research but not for autism research focused on environmental factors. Ms Binstock described the "it's gotta be genetic" paradigm in autism research in her article IGNAZ SEMMELWEISS and AUTISM: when prevailing paradigms resist change. In that article Ms Binstock recounted the historical example of Ignaz Semmelweiss who was vilified by the medical establishment of the day for his observations about hand washing, childbirth and puerperal fever which challenged the medical orthodoxy of the day. His observations could have saved many more lives if they had been accepted by the medical establishment instead he was vilified and ostracized.

In her 1999 article Ms Binstock compared the medical establishment's response to Semmelweiss to the modern medical establishment's response to autism:

"In other words, there was a very real cost -- prolonged human suffering, even numerous deaths -- because despite the data collected and shared by Dr. Semmelweiss, medical-research officials of his day were defiantly resistant to change. Similarly, keeping Dr. Semmelweiss's fate in mind, we wonder in regard to autism, how many years will new data be ignored? In how many U.S. medical school research facilities will promising research be steered away from or squelched? What will be required to cause the NIH and NIMH to quit acting like the officials who suppressed Semmelweiss and instead to begin acting like sincere scientists who appreciate new data, even as paradigms must adapt or be replaced.

My own hunch is that the NIH and NIMH will not change from within; the senior practitioners of the "it's gotta be genetic" model have too much influence. Just as Semmelweiss and his data were suppressed, so too will the NIH/NIMH autism-research insiders continue to act against the the growing body of new data in autism; the NIH's pro-genetic old-timers will cling to their paradigm and its funding. As a result, change within the NIH and NIMH will have to be initiated from outside those tax-supported corporations.

As a goal for 1999 and beyond, I offer that parents and their organizations and foundations increase the pressure brought to bear upon the NIH and the NIMH in regard to how autism-research funds are allocated. The "it's gotta be genetic" model is no longer the only paradigm worthy of funding; and not to fund other models and other data in autism is no longer scientifically valid. The NIH and the NIHM are re- enacting the Ignaz Semmelweiss scenario wherein new data are ignored on behalf of an old-guard and its outmoded paradigm; autism children and their parents deserve far more. The paradigm-shift in autism must occur more rapidly, even within the NIH."

The most likely explanation for the failure to conduct autism prevalence research to confirm whether the dramatic increases in autism is real is probably the one offered by Teresa Binstock. The medical establishment is loath to accept change, to consider alternatives which challenge the status quo. An establishment belief that autism disorders are 100% genetic in origin will not result in research to determine whether an increases in autism reflects a real increase or not. The established belief is that autism is genetic and therefore any increase cannot be real since genetics do not change that dramatically that quickly.

The failure to fund environmental research is still occurring with genetic autism research receiving at least 10 times as much funding as environmental research. This imbalance permits medical authorities to continue claiming that it is not clear whether there really are more autistic children today then 20 years ago. But much more than confirmation of a real autism increase has been lost. Greater understanding of autism causes, treatments and even possible cures might have been lost.

The IACC has begun reluctantly to acknowledge that autism disorders probably involve an interaction of environmental and genetic factors but the performance of Dr. Thomas Insel discussing autism and possible vaccine connections before Senator Harkin's Senate committee was not encouraging. Dr. Insel clearly has a closed mind on these issues. He even stated that studies of unvaccinated populations and vaccinated groups could not be done for ethical reasons even though respected health figures like Dr. Bernadine Healy and Dr. Julie Gerberding have said they could be done using observational comparative studies of existing unvaccinated and vaccinated populations.

Valuable time has been lost by the failure to conduct environmentally focused autism research.

It is long past time to get serious about autism disorders, to focus on finding all causes of autism disorders, genetic and environmental, and to find treatments and cures.

autism

New Autism Studies Begin to Fill Out the Genetic Part of the Autism Equation

WebMD reports that three studies published online claim to have identified gene variants involved in about 15% of autism diagnoses. The research subjects were mostly children with autistic disorder diagnoses. Hakon Hakonarson, MD, PhD, director of genomics research at The Children's Hospital of Philadelphia and the lead author of two of three studies states that:

"the newly identified gene variants found to boost autism risk are involved in facilitating communication between brain cells -- making more credible the suggestions from other autism experts that autism or ASDs are due to abnormal connections between brain cells early in development."

Dr. Hakonarson also points out that having the genetic variant does not automatically mean that autism will result. Other genetic and environmental factors are also involved.

Dr. Thomas Insel of the NIH was interviewed by WebMD about the studies and also places the new genetic studies results in a genetic and environmental context:

"If you think about autism as a jigsaw puzzle with 500 pieces, each of these findings is an 'edge' piece. But many edge pieces are needed to make progress.

It would be a mistake for people to read this and think this is only about genetics. Almost everybody agrees that autism is a collection of different disorders. Some of them may be heavily genetic. But I think most experts would say the bulk of autism is the result of both genetic and environmental effects that are interacting in some way that we have yet to fully describe.

This begins to fill out the genetic part of the equation."

autism

New Autism Genetic Data Released By John Hopkins and Autism Consortium

More detailed autism genetic data was released yesterday in a coordinated effort by the Autism Consortium and Johns Hopkins' McKusick-Nathans Institute of Genetic Medicine. As stated in the Autism Consortium and John Hopkins press releases the data was released to the world research community prior to publication in an effort to speed up research into causes of and cures for autism.

It is also interesting that parent driven organizations like Autism Speaks have been directly involved in the organization of this massive effort. The distrust of parent autism advocates and autism advocacy organizations demonstrated by Canada's CIHR does not seem to be shared by similar American agencies. The Autism Consortium DNA samples for the genome wide scans of DNA variation were provided by the Autism Genetic Resource Exchange (AGRE), a program of Autism Speaks.

The Autism Consortium consists of researchers from from Beth Israel Deaconess Medical Center, Boston Medical Center, Boston University, Boston University School of Medicine, Broad Institute of MIT and Harvard, Cambridge Health Alliance, Children’s Hospital Boston, Harvard University, Harvard Medical School, Massachusetts General Hospital, Massachusetts Institute of Technology, McLean Hospital and Tufts-New England Medical Center. The Autism Consortium web site can be found at www.autismconsortium.org. More information about the Johns Hopkins' McKusick-Nathans Institute of Genetic Medicine can be found at http://www.hopkinsmedicine.org/geneticmedicine/

From the Autism Consortium press release

Autism Consortium releases data on genes involved in autism to researchers worldwide

BOSTON – OCTOBER 22, 2007 – The Autism Consortium, a group of researchers, clinicians and families dedicated to radically accelerating research and enhancing clinical care for autism, announced today that it has completed the first genome scan for Autism Spectrum Disorders (ASD) through its Autism Gene Discovery Project and has released the reference data set to a database that autism researchers around the world can use. The scan was conducted using new, high resolution technology developed by Affymetrix on genetic data from more than 3,000 children with ASD and their families.

“Today’s release of genetic and phenotypic data on autism marks a significant achievement for the autism research community,” said Thomas Insel, Ph.D., Director of the National Institute for Mental Health. “Progress in finding the causes and cures for autism spectrum disorders rests in large part on improving the rapid access and sharing of data and resources That the Consortium is making the data available to the scientific community even before its own researchers have fully analyzed the information, demonstrates their high degree of commitment to and leadership in advancing autism research.”

Along with complementary data generated by Dr. Aravinda Chakravarti at Johns Hopkins and provided to the NIMH this week, these data provide the most detailed look to date at the genetic variation patterns in families with autism.

From the John Hopkins Press Release:

Hopkins Researchers Release Genome Data on Autism; Most Detailed Look at Genetic Contributions to Date

BALTIMORE, Oct. 22 (AScribe Newswire) -- Researchers at Johns Hopkins' McKusick-Nathans Institute of Genetic Medicine today are releasing newly generated genetic data to help speed autism research. The Hopkins data, coordinated with a similar data release from the Autism Consortium, aims to help uncover the underlying hereditary factors and speed the understanding of autism by encouraging scientific collaboration. These data provide the most detailed look to date at the genetic variation patterns in families with autism.

"Autism is a difficult enough genetic mystery for which we need all of the best minds and approaches to help unravel the role of genes in this neuropsychiatric illness," says Aravinda Chakravarti, Ph.D., director of the Center for Complex Disease Genomics at Hopkins.

Chakravarti and his team analyzed whole genomes from 1,250 autistic individuals, their siblings and parents; these samples were collected across the United States by many researchers under the aegis of the National Institute of Mental Health, part of the National Institutes of Health. Mark Daly, Ph.D., a senior associate member of the Broad Institute of Massachusetts Institute of Technology and Harvard, is part of the Autism Consortium which released data acquired collected similarly from 3,000 individuals who are either affected by autism spectrum disorders (ASD) or are family members of individuals with autism.

"We're releasing raw genotype data so that other qualified researchers can take a look at it even as we're still beginning our own analysis," says Daly.

"It is really something of a landmark to have pre-publication data from our laboratories available to autism researchers. We are doing so in the spirit of the human genome project where such data releases were critical to progress long before final results were available. We are carefully looking at our collaborative findings as we continue to search for definitive information about which genes are important in causing autism spectrum disorders," says Chakravarti, who has collaborated with Daly for many years. "We hope to identify the most likely candidates over the next few months."

Autism Research - Autism's Environmental Triggers

The paradigm shift taking place in autism research is well underway and it is intensifying with the announcements of funding of several autism research centers in the United States. The focus of much current research is to find the environmental factors that may trigger the onset of autism in genetically vulnerable children.

Specific pesticides have recently been identified as possible triggers in some cases. But research into environmental factors as causes of autism has been stalled by the fallout from the thimerosal debate as researchers feared becoming marginalized in their careers if they discussed environmental issues. Now the research into possible environmental causes or triggering factors is moving ahead. And, in a truly revolutionary development, researchers are even listening to parents, a fact which will not sit well with Neurodiversity ideologues:

http://www.boston.com/yourlife/health/diseases/articles/2007/08/13/under_suspicion/


She [Nancy Duly, autism mother] was speaking at a press conference at the University of California at Davis announcing $7.5 million in new federal funding, including about $2 million for a groundbreaking study that seeks to track, earlier and more closely than before, potential environmental triggers for autism -- beginning in the womb.

As the ranks of children diagnosed with autism grow, researchers are focusing more on such efforts. They are casting an ever-widening net to try to detect possible environmental factors -- such as chemicals or infections -- that could be interacting with genetic risk factors.

Money is beginning to stream toward researchers who are on that trail, supporting a new wave of studies.

"Environmental research will be a much bigger field going forward," said Dr. Thomas Insel, director of the National Institute of Mental Health. "A lot of parents have been telling us about their concerns; now we're listening very closely."

Until recently, about 90 percent of autism research has focused on genetics, and only perhaps 10 percent on environmental factors, said Dr. Gary Goldstein, chairman of the scientific board of Autism Speaks, a national research and advocacy group. In the coming years, he expects the ratio to be 1 to 1.

Dr. Martha Herbert, a Harvard neuroscientist and Massachusetts General Hospital neurologist, said a few years ago, autism researchers would be marginalized if they talked about environmental factors. But now, "any major article or proposal concerning the causes of autism is coming to be considered incomplete if it doesn't talk about a potential role of environmental factors."