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

6 Oct

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.

9 Responses to “Do we need an epidemic for people to take autism seriously?”

  1. farmwifetwo October 6, 2009 at 12:12 #

    As long as the Aspies and ASAN keep calling it a difference and not a disability… as long as they want to be left alone and think children with autism should be to and therefore not educated, nor receive any form of therapy – sorry, by their “don’t change me stance” – that’s how it’s coming across….

    People nor gov’ts will take it seriously much longer.

    • Sullivan October 6, 2009 at 14:26 #

      As long as the Aspies and ASAN keep calling it a difference and not a disability…

      Have you read ASAN’s website or

      I count 19 instances of the word disability on th e main page for ASAN’s website.

      This includes their Mission Statement

      Mission Statement: The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports and others, ASAN seeks to organize the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community. Nothing About Us, Without Us!

      as long as they want to be left alone and think children with autism should be to and therefore not educated, nor receive any form of therapy – sorry, by their “don’t change me stance” – that’s how it’s coming across….

      Do you actually believe this lie or are you just repeating it for smear effect?

  2. Joseph October 6, 2009 at 14:10 #

    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?

    If I recall correctly, Dr. Jay Gordon asserted that if a rise is big enough (66-fold in this case), this can’t possibly be explained by artifacts like “better diagnosis.” By his logic, we can only conclude that Richard Grinker is an environmental factor.

  3. Stephanie October 6, 2009 at 22:46 #

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

    By calling something an epidemic you generate fear; that fear is used to manipulate people into reacting (as per your recommendations) without thinking about it first. In that sense, it’s not intended to help people take autism more seriously, but to follow their recommendations.

  4. Roger Kulp October 8, 2009 at 05:25 #

    What farmwifetwo is trying to say,is that ASAN will not be taken seriously until they make official statements that say :

    1)There are seriously disabled autistics who do not find anything positive about their autism.

    2)There are autistics who cannot function enough to achieve their full potential,unless they have biomedical treatments.Biomedical treatment for a physiological disease of the brain.

    I think if Ne’eman were to go public with such a statement,he might prove to be half the man others think he is.

  5. Joseph October 8, 2009 at 16:10 #

    1)There are seriously disabled autistics who do not find anything positive about their autism.

    There are autistics who do not find anything positive about their autism. That they are more seriously disabled than other autistics is unfounded speculation. I bet there are many autistics who are barely autistic and who moan about autism all the time.

    There are autistics who cannot function enough to achieve their full potential,unless they have biomedical treatments.Biomedical treatment for a physiological disease of the brain.

    I’m not sure that anyone can function enough to achieve their full potential. How do you know what someone’s full potential is?

    What is the evidence that biomedical treatments would allow someone to achieve their full potential?

    Anyway, I don’t think ASAN would be interested in making statements that make no sense.

  6. Dedj October 8, 2009 at 17:09 #

    ASAN is already being taken seriously.

    Mr Kulp’s no.1 would be an utterly nonsensical statement for ASAN to make. It has nothing to do with their purpose for being as laid out in thier mission statement.

    No.2 is unsupported. There is very little evidence that biomeds work directly on the pathways of autistic behaviour, much less that they are the only effective treatment. In addition, biomed treatment for autism often incorporates treatment for digestive issues, indicating that biomed considers autism to involve far more than just the brain.

    Neither statement would make any sense coming from ASAN, nor is it up to Roger to determine the criteria for being taken seriously – criteria which ‘just happens’ to require agreeing with his worldview.

  7. pocker October 20, 2009 at 10:38 #

    I totally agree with Stephanie that by calling something an epidemic you generate fear.

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  1. Tweets that mention Autism Blog - Do we need an epidemic for people to take autism seriously? « Left Brain/Right Brain -- Topsy.com - October 6, 2009

    […] This post was mentioned on Twitter by autism_hub and Autism Hub. Autism Hub said: New post: Do we need an epidemic for people to take autism seriously?: Do we need an epidemic for peop.. http://bit.ly/J3Qpa […]

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