Tuesday, August 18, 2009

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.

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1 comment:

Anonymous said...

Excellent information and insight.

Thanks again, Harold. I agree with it.