Friday, October 02, 2009

Autism Rate Now 1 in 100: Here Comes the Diagnostic Change Excuse Yet Again

The CDC is now revising its autism rate figure from 1 in 150 to 1 in 100. Watch for the usual bright lights to trot out the 1994 DSM definition change to rationalize this very dramatic increase in autism rate estimates. From 1 in 500 to 1 in 250 to 1 in 166 to 1 in 150 to 1 in 100.

Amazingly the same factors - diagnostic definition change, increased social awareness etc are trotted out each time to deny that autism is really increasing. This happens almost as soon as the estimate is changed and without any science to back up the claim. Anything as long as we can deny that autism rates are really increasing.

Amazingly, US Secretary of HHS Kathleen Sebelius has, according to the Age of Autism, called for more genetic as opposed to environmental autism research to explain the increase.

Incredible. Someone should change her talking points.

Bookmark and Share


Roger Kulp said...

Someone needs to ask Kathleen Sebelius what she thinks of neurodiversity.I think the answer might prove very enlightening.

Astrid said...

Harold, just last Monday you were proposing that autism criteria be narrowed again to prevent "high-functioning", "Asperger's" autistic advocates from falling within the same category as your child. Now you are shoving the 1 in 100 estimate into people's face as a way to "prove" that autism rates are increasing. Now I for one am not principly opposed to environmental causes (I don't believe in the vaccine theory because there is no scientific basis whatsoever, but other environmental factors, like premature birth, prenatal infections, etc., are known risk factors), and I for one am not opposed to the idea that autism is increasing somewhat (although I don't believe in an "epidemic"). However, could you consider the possibility that people who formerly used to cope relatively well in schools, or if they didn't, were diagnosed with "being dumb", are now falling apart due to increased demands on social functioning and flexibility. People with whatever genotype or neurology predisposes to what we now call Asperger's or HFA, probably existed all along, but possibly in a different society, a few decades ago, they somehow managed better. Add to this more and more universal screening for autism (so that even those children who would otherwise remain hidden, are now more easily found by clinicians), and a large bit of the autism increase can actually be explained. Along with some increase due to such factors as more premature births, mothers bearning children at a later age, etc., which could explain some genuine increase in autism, but don't explain an "epidemic". However, please realize that the very vast majority of autistics who now make it into the CDC numbers, are not the "low-functioning" autistics like your child, but the "high-functioning" or Asperger's people. Now which is true: 1 in 100 are autistic, or "high-functioning" autistics shouldn't be in the same category as your child? It looks like you are contradicting yourself here.

Autism Reality NB said...


You haven't read my comments carefully. There is no dispute that the expansion of the DSM diagnostic criteria and categories of autism in the DSM III-R and the DSM IV expanded greatly the numbers of "autism" diagnoses. But those changes occurred in 1994. We are now 15 years later and the estimates have changed dramatically several times.

EACH time the estimate is changed the 1994 expansion is cited as an explanation. You can't use a 1994 diagnostic definition change to explain a change from 1 in 150 in 2007 to 1 in 100 in 2009.

The recent U of California Davis M.I.N.D. study acknowledged the role played by diagnostic definition changes and increased awareness of autism in explaining some BUT NOT ALL of the increases to the point of their.

Dr. Irva Hertz-Picciotto, who was involved with that study has called for more balance in the funding of autism research which favors genetic over environmental research by as much as 20 to 1, a figure consistent with the position taken by Teresa Binstock in 1999 who reported that in order to get funding for autism research "it's gotta be genetic". Environmental factors have been deliberately ignored.

Dr. Simon Baron-Cohen has pointed out that in cases where an identical twin is autistic the other twin OFTEN is BUT NOT ALWAYS. The NOT ALWAYS factor points to a non-genetic or environmental component in autism. Dr. Poling has called for environmental research as has Dr. Bernadine Healy and even Dr. Julie Gerberding.

Diagnostic change and increased awareness are big factors contributing to much of but not ALL of the increase in autism diagnoses. Do you disagree with that proposition?

Yet even with such a dramatic change from 1 in 150 to 1 in 100 in 2009 US Secretary of HHS Sebelius spoke only of GENETIC factors in her comments about the change, ignoring once again the environmental component that so many reputable voices have stated needs to be studied.

Astrid said...

Again, Harold, I never said I think autism is purely genetic, and I agree with you that a HHS secretary who says so, probably without knowing all of the research (I assume she isn't an autism professional herself, is she?), is mistaken.

As for your argument about the 1994 change: not even most clinicians would've known about Asperger's etc. right in 1994, let alone teachers, parents, public policymakers, etc. It is quite possible that a change to criteria may effect statistics many years later. As I said, there are other related factors, too: with the first "increases" in autism (perhaps due to the 1994 diagnostic shift), there came more awareness, and each time the stats change, there comes more awareness. And with more awareness come more screening programs, and more parents who take their children to clinicians, etc. The media also didn't pick up on Asperger's etc. in 1994, at least not here: in the Netherlands, Asperger's became "popular" around 2002/2003, due to media coverage. Prior to that time, there were many doctors (primary care docs, I admit) who told autistics seeking diagnosis: "you can't possibly autistic cause you speak", despite the fact that even for classic autism, that's not what the 1994 criteria say. Aroudn that time, my city's autism adult clinic was the only one specifically for adults in the country; now pretty much every major city has one, and I assume the same expansion or even more has occurred for children. Are allt he diagnostic clinics opening because autism is increasing, or is autism increasing because all the clinics are opening and seeing children/adults?

Autism Reality NB said...


I agree that it would take time for all physicians and psychologists to get up to speed on the 1994 diagnostic change.

But it should not take 15 years especially in this era of rapid dissemination of knowledge.

Even the IACC acknowledges that autism likely arises from the interaction of genetic and environmental factors. Yet the research is funded overwhelmingly in favor of genetic based autism research leaving potentially preventable environmental factors un-researched.

I am simply stating what Teresa Binstock, Dr. Healing, Dr Gerberding, Dr. Poling and Dr. Irva Hertz-Picciotto have all said it is time to do the environmental research and to even out the funding to ensure that we understand the whole autism pictures.