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.

The LA Times has written an  ill informed, one sided, article on autism increases which misleads the public into believing that the evidence has clearly established that the entire increase in autism diagnoses over the past two decades is attributable to the 1994 DSM diagnostic manual changes, diagnostic substitution, and the hunt for government funded autism services. The article, Discovering Autism Unraveling an epidemic, can be summarized in the following paragraph from the article:


"Two decades into the boom, however, the balance of evidence suggests that it is more a surge in diagnosis than in disease."

The truth is the LA Times article publishes no reference to studies that confirm that conclusion about the alleged balance of evidence.  The LAT does refer dismissively to Dr. Irva Hertz-Piccioto who has conducted research on possible environmental causes of autism disorders.  It also offers selective quotes from a variety of other autism sources, in addition to Roy Richard Grinker, the anthropologist and father of a high functioning child with Aspergers, who has sought out all the allegedly autistic Korean children who function very well in Korean society.

What the article does not mention is the emerging consensus that autism arises not just from genetic factors, which would support the biased perspective the LAT offers, but from the interaction of genetic and environmental factors.  Nor, in dismissing Dr. Hertz-Picciotto's work, does it mention that genetic autism research has been overwhelmingly funded at the expense of environmental autism research.  Better to present positively the opinions of a biased anthropologist with an agenda then an actual autism researcher.

Dr. Bearman, a sociologist, is also quoted but not in any meaningful way. He was interviewed more fully, or quoted more fully, in an article on the National Institute of Mental Health website reporting a discussion Dr. Bearman had with Dr. Tom Insel of the IACC:

Dr. Insel: From what you know now when you add all of those together how much of the increase can you explain?


Dr. Bearman: Well that’s a complicated question, but I think we can pretty uniquely associate about a quarter of the increase from the birth cohorts from 1992 to 2001 which is a lot, to diagnostic change on the border between diagnosis and mental retardation in autism. I think we can associate about 16 percent of the increase on the other border between autism and other neurodevelopmental disorders on the spectrum: Asperger’s, PPDNOS etc. And those are largely non over-lapping components of increase, so that’s about 40 percent. I think the spacial clustering itself adds another few percent. I would say I am confident that 40 percent of the increase I think I know what caused that. That leaves a lot of increase left, 50 percent is a lot to look for still.


Dr. Insel: Any ideas about what’s driving that other 50 percent?


Dr. Bearman: Well, some is genetic. I think that the increased parental age accounts were 11 percent of the increase over this period and that’s a lot and the mechanism by which increased parental ages expressing itself I think likely largely genetic. I think the tricky part is going to recognize that it would be harder now to find that 50 percent. It would look like it should be some toxicological environment that’s shared because of the spacial clustering. Because there’s a very strong process of amplification of the understanding of autism that leads to increased diagnosis as parents learn how to recognize symptoms a very, very, small event that would transform the environment five years ago, ten years ago, even you could imagine, 40 years or 50 years ago, when the moms of children with autism now were in utero as eggs- a very small event could cascade into a larger epidemic now."

The LA Times could have checked out the web site of the IACC, the Interagency Autism Coordinating Committee which states:

"As with many complex disorders, [autism] causation is generally thought to involve some forms of genetic risk interacting with some forms of non-genetic environmental exposure. ... In addition, a number of other environmental factors are being explored through research because they are known or suspected to influence early development of the brain and nervous system. Recent studies suggest factors such as parental age, exposure to infections, toxins, and other biological agents may confer environmental risk. ... Progress in identifying environmental factors which increase autism risk has been made recently (Eskenazi et al., 2007; Palmer et al., 2006; Palmer, Blanchard,; Wood, 2009; Rauh et al., 2006; Roberts et al., 2007; Windham et al., 2006), although this area of research has received less scientific attention and far fewer research dollars than genetic risk factors" [Underlining added - HLD]


- United States IACC (Interagency Autism Coordinating Committee)

No one disputes the obvious fact that the 1994 DSM changes increased the number of autism diagnoses.  The LAT implies though that the "science" indicates that the increase in autism diagnoses is simply a matter of diagnostic change and substitution and that environment plays no significant role in causing autism disorders. That position amounts to a confession of ignorance and/or bias by the LAT ... and a lack of concern over whether the number of autism diagnoses could be decreased if the research dollars were distributed more evenly towards research of environmental causes and triggers of autism disorders. 

The newly reported autism study from South Korea with its "shocking" 1 in 38 autism rates figure doesn't make much sense. As reported in the Boston Globe:

"Roy Richard Grinker, a cultural anthropologist at George Washington University who worked on the study, said his own child with autism would probably function very well in such a system.

"Many kids with autism who are doing well can adapt to that highly structured situation," he said.

So, what does this finding mean for the United States?

Not necessarily much, according to several researchers who were not involved in the study. They praised the study generally, but pointed out flaws and assumptions that raise questions about whether there really are so many kids with autism in South Korea -- and by extension, in the United States.

Dr. Isaac S. Kohane, a professor of pediatrics at Children’s Hospital Boston and Harvard Medical School, said he thinks the researchers may have taken their estimations too far by assuming that the rate of autism was the same among the nearly 700 families who declined followup assessments for their children, as among the ones who agreed. Wouldn’t a parent worried about a child be more likely to participate than one with no concerns? Without this assumption, Kohane says the researchers would have found roughly the same 1 in 100 prevalence we see in the United States.

Also, the definition of "autism" is so squishy today that it’s very hard to draw the line between autistic and non-autistic, he and other researchers said."

I am the father of a low functioning son with Autistic Disorder and I am not a fan of Roy Richard Grinker's involvement in defining autism and autism prevalence estimates. Grinker is the father of a high functioning child with Asperger's who favors the New Autism Spectrum Disorder definitions of the DSM-5.

I don't know why an anthropologist with strong biases was involved in an autism prevalence study in South Korea. I am not surprised though if a Grinker involved study found higher rates of autism ... particularly if the autistic persons found to have been missed were very high functioning.

Regardless, Dr. Kohane a professor of pediatrics at Children’s Hospital Boston and Harvard Medical School has pointed out some serious flaws and assumptions involved in the study. Hopefully other serious professionals will examine the study and consider Dr. Kohane's comments before promoting the 1 in 38 study from Grinker and Co.

Will the DSM5 render meaningless all autism research to date? Will the DSM5 make it impossible to determine whether autism disorders are increasing or whether they are triggered or caused by environmental factors? The odds are good, given the difficulties in answering these questions resulting from the expansion of "autism" disorders in the DSM-IV and DSM-IV-TR to include Asperger's, that our understanding of autism prevalence and causation will be hampered substantially, and perhaps totally undermined, by yet another revision of the autism diagnostic categories in the DSM-5.  Even our understanding of what autism is will likely change, again, as a result of the DSM-5 revisions.  The intellectual disabilities that characterized the vast majority (Yeargin-Allsopp) of persons with classic autism will now be totally  replaced by the "socially quirky" model of autism.

Autism is now recognized globally with a World Autism Awareness Day each April 2.  While the day is used for autism fund raising, and celebrating the color blue,  it does little to actually raise awareness about the nature of autism, the numbers of persons with autism disorders, or the causes or treatment of autism.  Amongst the leading factors that contribute to our inability to qualitatively improve our understanding of autism disorders is the changing diagnostic definition of autism, increased social awareness and according to some at least, the widescale availability of autism treatments and education accommodations prompting diagnostic substitution by professionals, often prompted by parents.

Roy Richard Grinker is one of the best known advocates of the "don't worry, be happy" autism is not really increasing school of thought.  A 2007 copyright summary of Grinker's  book Unstrange Minds tells us all what was really happening with autism increases ...  in Grinker's opinion:

"Unstrange Minds shows how the shift in how we view and count autism is part of a set of broader shifts taking place in societies throughout the world. The growth of child psychiatry, the decline of psychoanalysis, the internet, the rise of international advocacy organizations, greater public sensitivity to children's educational problems, and changes in public policies have together changed the way autism is diagnosed and defined.


Societies are becoming more aware of children's behavioral and learning differences at earlier and earlier ages and more comfortable with diagnosis, medication, and psychiatric labels. Under the rubric of autism we now find a multitude of emotional and cognitive problems, problems that used to be given other diagnostic labels or that were even considered within the range of the normal. Doctors now have a more heightened awareness of autism and are diagnosing it with more frequency, and public schools in the United States, which first started using the category of autism during the 1991-1992 school year, are reporting it more often, developing ways to help children with autism, and directing parents to appropriate resources. Epidemiologists are also counting it better.


As a result, the statistics on autism that we have today - 1 in 166 -- are the most accurate we've ever had."

 The 2007 summary was written more than a dozen years after the last diagnostic definition change for autism disorders in the DSM manuals.  Yet the CDC recognized rates have moved upward twice since then to 1 in 150 and most recently to 1 in 110.  I am no cultural anthropologist but with a change from 1 in 166 to 1 in 110 it seems fool hardy to simply assume that the increased rates of approximately another 50% in 4 years are accounted for solely on the basis of diagnostic and social ascertainment factors. 

It is worthy to note that the IACC has acknowledged that the almost 100% dedication of autism funding toward genetic focused research has come at the cost of needed environmentally focused research, that the current thinking is that autism arises from the interaction of genetic and environmental factors (hardly a radical concept) and that the IACC view is that the social and diagnostic changes account for only approximately 50% of the dramatic increases in reported cases of autism disorders.

It seems that, finally the feel good, autism is 100% genetic and is not really increasing view of the Grinker (and Neurodiversity) model of autism is about to be seriously challenged and hopefully researched.  But wait a minute ... along comes another autism diagnostic revision in the DSM-5. 

PREDICTION: The DSM-5 autism diagnostic revisions will once again be used to cloud and confuse our understanding of autism rates and causation.  Many concerned parents and concerned professionals will be  Out of Luck in hoping for more understanding of autism.  Roy Richard Grinker, however, and those for whom exploration of potential environmental causes of autism are a nuisance, should be happy that Grinker's 100% genetic, stable model of autism will be protected from serious research challenges for decades to come.