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Do we need an epidemic for people to take autism seriously?

Posted Oct 06 2009 10:01pm

There is a lot of press coverage around the recent Pediatrics study and the government’s stand that the prevalence of autism spectrum disorders (ASD’s) is about 1%. As I read the articles and, especially, some of the blogs, I am left with the question: why do some people feel that we need an epidemic in order for autism to be taken seriously?

Dr. Geraldine Dawson, chief science officer for Autism Speaks responded to the announcement with:

“There is converging evidence that autism spectrum disorders affect about one percent of the population. This study further emphasized that autism affects boys at a significantly higher rate. It is imperative that more resources be given to autism research so we can understand the causes and biology of autism and develop more effective treatments.”

Autism Speaks is a group that depends on donations, and they aren’t making unfounded calls of an epidemic.

An ASD rate of 1% or more has been shown in studies for at least 10 years. The just released study used the National Child Health Survey 2007 data. This raised a bit of a stir when the study results were leaked recently, and I spent a lot of time looking at the raw data. I also pointed out that Joseph at the Natural Variation-Autism blog discussed a number of studies pointing to a 1% or higher prevalence in his post Moving Toward a New Consensus Prevalence of 1% or Higher.

These studies weren’t hidden or obscure, either. Even Dr. Andrew Wakefield, the man most responsible for the notion that the MMR vaccine causes autism, cited the Swedish study in his early patent application.

The studies are known to researchers in the field. In a Time magazine story out Monday, Prof. Richard Roy Grinker is quoted:

What’s significant is that the study lines up well with other, more rigorous studies finding a 1% rate of autism. “It provides what scientists call convergent validity: no matter how you shake the bushes, you come up with this 1%,” says Richard Roy Grinker, an autism researcher at George Washington University who has worked to determine ASD prevalence in South Korea.

As noted, Prof. Grinker’s team has studied the ASD prevalence in South Korea. At the Autism Speaks “Decade for Autism” kickoff at the U.N., one of Prof. Grinker’s collaborators, Dr. Young Shin Kim, noted that the prevalence in Korea is likely in line with other countries—1 in 100 to 1 in 200.

If you think the recent jump from 1 in 150 to 1 in 91 was a shocker for the United States, wait until the Korean prevalence jumps from 1 in 10,000 to, say, 1 in 150. Will they claim epidemic, or will they realize that the previous prevalence method seriously under counted the autistic population?

Prof. Craig Newschaeffer of Drexil University is quoted as in Time Magazine saying:

“Nonetheless, the survey reinforces what we have come to understand over the past decade — that autism is much more common than previously thought.”

It is safe to say that Geraldine Dawson, Richard Roy Grinker and Craig Newschaeffer take autism very seriously. And yet they (and the vast majority of the autism research community) do not believe in or feel the need to promote autism as an “epidemic”.

The major autism research organizations aren’t claiming an epidemic. Autism Speaks, Simons Foundation, and the Nancy Lurie Marks (NLM) Family Foundation aren’t calling this an epidemic. Even the Autism Society of America didn’t call the news an “epidemic” in their press release. My guess is that no one will be shocked that the Autistic Self Advocacy Network didn’t call the latest prevalence figures a sign of an epidemic.

Look outside the autism communities. Do we need to hear “epidemic” in order to take disabilities seriously? No.

One can take autism very seriously and still not consider it an epidemic. I realize that many readers of this blog won’t consider this news at all.

I know many people can’t see how jump in the number of ASD diagnoses (or, in the case of this study, parent-reported autism diagnoses) doesn’t mean an epidemic. But many of us have been pointing out how the previous ASD prevalence values were under counts.

Frankly, I find it very disturbing that we likely haven’t been identifying all the autistic kids and adults for all these years.

I find it more disturbing that many of the so-called autism advocacy organizations have been so willing to ignore the possibility that the prevalence estimates were an under count—all in the name of promoting vaccine causation.

The most cited autism prevalence number up until now was 1 in 150. This came from a CDC report called an MMWR, published in 2007, Prevalence of Autism Spectrum Disorders—- Autism and Developmental Disabilities Monitoring Network, 14 Sites, United States, 2002.

The study looked at 8 year olds in 2002—children born in 1994. The prevalence was 1 in 150. Another way to put that is 67 per 10,000.

These same children were 13 in 2007, when the NCHS survey data was taken. This is the data used for the 1 in 91 prevalence estimate released this week.

Take a look at Table 1 from the recent Pediatrics study. The prevalence for 12-14 year olds is 118 per 10,000.

So, one study, using one methodology, using data from 2002 and published in 2007 gets 66 per 10,000.

Another study, using different methodology, using data from 2007 and published in 2009 get 118 per 10,000.

This for the same group of kids.

Is there an epidemic? Is there an epidemic that nearly doubles the autism prevalence kids between the time they are 8 and the time they are 13?

Autism advocacy doesn’t need an epidemic to be taken seriously. In fact, pushing an epidemic will make sure we aren’t taken seriously.

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