What is in a number?

25 Sep

As just about any parent in the US (and probably a lot elsewhere), “what is the prevalence of autism and you will get a nearly instant response, “1 in 150”.  They may know that this is also 6.6 per 1,000.  They will probably know that it was reported as 1 in 166 before that, and so the numbers are climbing.

Ask the same parents, “Where is the prevalence highest?” and you will probably hear, “New Jersey”.  They will probably know that it is 10.6 per 1,000 there, or more that 1 in 100.

Ask the parents, “What group had the lowest prevalence?”  My guess is that few will answer.  Some might recall that Alabama reported 3.3 per 1,000. 

Even that is pretty staggering:  Alabama has less that 1/3 the prevalence of New Jersey? Why aren’t people from New Jersey flocking to Alabama to avoid autism? Why isn’t moving to Alabama high on the Generation Rescue protocol for avoiding autism? Why isn’t anyone asking Congress to study “Autism amongst the Alabamans”?

Take a closer look, though.  Include subgroups.  Include ethnicity.  Who then has the lowest reported prevalence?  Almost no one knows.  Take a look at page 18 of the MMWR report by the CDC on autism. Who has the lowest prevalence?  Hispanics in pretty much everywhere checked.  More to the point, Hispanics in Wisconsin have 0.3 per 1,000 as the reported prevalence.

No, that isn’t a typo.  0.3 per 1,000 lowest compared to 10.6 per 1,000 as the highest:  a factor of 35 different.  It’s a factor of 22 lower than the national average.

Drop the Amish!  (well, since no one has ever bothered to ask their permission, don’t start with the Amish!) Let’s do a study on the Hispanics of Wisconsin!  Demand that your congressman/woman support a bill to study Autism in the Wisconsin Hispanics!

Maybe we will find out they don’t vaccinate!  Maybe we can spend $200,000 on a phone survey!

Maybe the numbers aren’t accurate.

The thing is, it is so obvious that no one commented on this.  For those invested in the epidemic, the reasons are fairly likely the obvious.  You can’t claim an epidemic with innacurate numbers.  You really can’t if we are still in catch-up mode to identify subgroups.

If we do a better job identifying people with autism, the numbers go up. Simple.  It could be hiding an increase in real prevalence.  Heck, it could be hiding a drop, for all we know.  You don’t need enough scientific background to even understand an “r” value to get that.

This isn’t news to the real front line.  Take a look at page 19 of the 2003 report on Autism by the CDDS.  Between 1987 and 2002 the total number of people served under autism by the CDDS increased by 733%.  That supports the epidemic, right?  But, at the same time, the numbers of Hispanics went up by 1,743%! 

How could this happen?  Were Hispanics more susceptible to the vaccines in the 1990’s, causing their numbers to skyrocket?  If so, why is the fraction of Hispanics served in the Regional Centers lower than the White fraction?

You don’t have to speculate, the CDDS tells us:

Increased efforts on the part of regional centers over the past 15 year to reach specific ethnic groups may have contributed in part to the proportional increase in Asians and Hispanics with autism entering the system.

Increased efforts results in higher numbers identified.  Not a tough one to figure out.  Just like increased awareness results in higher numbers identified.

Sorry all you epidemic believers.  If you really believed your own story you would have made a big deal out of the low numbers amongst Hispanics in Wisconsin and called for a study to understand their “resistance” to autism.  But, then you would have to admit that part of the reason the numbers in California went up was better identification amongst minorities. 

The thing is, we need to make a big deal out of these numbers.  It is shameful that we are allowing a large amount of our people to go unidentified.

That’s one big problem with the epidemic party line.  It allows, heck it requires, that we neglect the fact that we are undercounting and underserving people.

That is just plain wrong.

15 Responses to “What is in a number?”

  1. Uncle dave September 25, 2007 at 20:25 #

    Frankly I really do not see the significance of regional centers in any of the statistics?

    Regional Centers are a mixed bag in and of themselves. i.e. staffed with individuals with little or no training, primarily a parental advocacy group that only occationally gets involved in special education cases like IEP meetings representing the parents. They are not involved in every special education case by any means. Thier involvment is only warrented by parental request.

    If you present the numbers based on a tally of K-12 special education data primarily taken from IEP reports, you will still have individuals that doubt those numbers as well. Much like Autism Diva who seems concerned that there is a racial bias to those statistics as well (Blacks being labeled as merely as retarded who are believed to be autistic).
    Frankly I would take the statistical data collected by the state school systems to be closer to reality than any other. There will be a statistical error and misdiagnosis issues especially in the early grades, but from at least 5th grade on they should be pretty reliable.

  2. Matt September 25, 2007 at 21:04 #

    Uncle Dave,

    first, take note that the 1 in 150 number and much of the data presented above are CDC numbers (Federal) not CDDS (State). However, they both suffer from the same limitation: they are counting previously identified individuals.

    They do not go out and actually find out what fraction is autistic or not. The CDC uses educational numbers for many of the States.

    Also, all the problems you discuss with CDDS are present in the school district data.

  3. Joseph September 25, 2007 at 21:12 #

    David Kirby once admitted that the numbers can be and are considerably behind the epidemiology. I’m not sure he realized what it is he was saying.

    But the national autism rate within IDEA is only 25 per 10,000 among 3-5 year olds, far below the estimated rate of 60 per 10,000. Ohio has only 9 cases per 10,000, Puerto Rico just 7, and Oklahoma just 4 (about 1/20th the rate of Maine).

    Clearly, we need to let the diagnosing and reporting catch up before drawing any solid conclusions about autism…

  4. Uncle Dave September 25, 2007 at 22:02 #

    Matt,

    Hmmmmm. I will have to look at this a bit closer.
    thanks

  5. Sprite September 25, 2007 at 23:44 #

    The majority of Hispanics in Wisconsin are foreign born and came to the United States at an age well above the 18 months to 2 years at which the condition typically manifests. The preponderance of older individuals over children young enough to have been subjected to our brutal schedule of immunizations (33 – or is it more? – by 18 months) skews the sample. Wisconsin- Hispanic cases of autism aren’t being under-counted. They aren’t there – right now. Tragically, they will be, as these people’s American-born babies hit the vulnerable age.

    By the way, why should we “drop” the Amish? With or without their permission, studies have already been done, and the results are plain.

  6. Sullivan September 26, 2007 at 00:15 #

    “By the way, why should we “drop” the Amish? With or without their permission, studies have already been done, and the results are plain.”

    And the reference to an abstract or paper is where? Not a reference to a Dan Olmsted article, a paper studying the Amish.

    There isn’t one.

    There is a proposed bill in Congress to study autism amongst the “unvaccinated”. The Amish are specifically noted in that bill. Should we tell that congresswoman to pull the bill?

  7. Sullivan September 26, 2007 at 00:51 #

    The majority of Hispanics in Wisconsin are foreign born and came to the United States at an age well above the 18 months to 2 years at which the condition typically manifests. The preponderance of older individuals over children young enough to have been subjected to our brutal schedule of immunizations (33 – or is it more? – by 18 months) skews the sample. Wisconsin- Hispanic cases of autism aren’t being under-counted. They aren’t there – right now.

    this is a very strange set of statements.

    There is no way to spin this that “they aren’t there”. The fact that you cite no data suggests to me that you are perhaps presenting “facts” which do not exist.

    There were about 93,000 Hispanics in Wisconsin in 1990. That is about 1/3 of the number now. If you tried hard, you could argue for maybe a rate 1/3 that of the rest of the norm. You’d have to try really hard.

    The fraction of the Hispanic population under age 15 is about 30%. The statewide total is about 20%. So, your arguement that there is a “preponderance” of older individuals amongst Hispanics is nonsense.

    Click to access HispanicChartbook.pdf

    Besides, David Kirby has been arguing that the immigrants are bringing the autism with them since they still get Thimerosal in their vaccinations. It isn’t a good argument, but it runs counter to your own, flawed, logic.

  8. Erica September 26, 2007 at 01:19 #

    a friend emailed me and said that generation rescue has an ad in UsAToday about their study and vaccines. does anyone know about this? she said it was very cool but I have never heard of this study?

  9. Sullivan September 26, 2007 at 01:34 #

    Sprite,

    Stick to the story for now–the important part is the fact that the CDC numbers are not accurate. There will be more increases in the future as more people are correctly identified.

    Allowing people to go unidentified is wrong. Assuming that the numbers are accurate allows this to happen.

    Now to the specifics. Hispanics in Wisconsin have a higher percentage under age 15 than the general population. 30% for Hispanics, 20% for the total population

    Page 15 of this document

    Click to access HispanicChartbook.pdf

    Your arguement doesn’t work.

  10. Sullivan September 26, 2007 at 01:35 #

    Sprite,

    Stick to the story for now–the important part is the fact that the CDC numbers are not accurate. There will be more increases in the future as more people are correctly identified.

    Allowing people to go unidentified is wrong. Assuming that the numbers are accurate allows this to happen.

    Now to the specifics. Hispanics in Wisconsin have a higher percentage under age 15 than the general population. 30% for Hispanics, 20% for the total population

    Page 15 of this document
    http://www.ssc.wisc.edu/poplab/reports/HispanicChartbook.pdf

    Your arguement doesn’t work.

  11. Sullivan September 26, 2007 at 01:36 #

    Sprite,

    Stick to the story for now–the important part is the fact that the CDC numbers are not accurate. There will be more increases in the future as more people are correctly identified.

    Allowing people to go unidentified is wrong. Assuming that the numbers are accurate allows this to happen.

    Now to the specifics. Hispanics in Wisconsin have a higher percentage under age 15 than the general population. 30% for Hispanics, 20% for the total population

    Google “HispanicChartbook.pdf” and check page 15.

    Your arguement isn’t accurate.

  12. Matt September 26, 2007 at 16:56 #

    “a friend emailed me and said that generation rescue has an ad in UsAToday about their study and vaccines. does anyone know about this? she said it was very cool but I have never heard of this study?”

    Erica

    There indeed is a survey done by Generation Rescue. To call it a ‘study’ may not be exactly accurate.

    There is a great discussion of it here
    https://leftbrainrightbrain.co.uk/?p=567

  13. HN September 26, 2007 at 19:03 #

    Sprite said “The majority of Hispanics in Wisconsin are foreign born and came to the United States at an age well above the 18 months to 2 years at which the condition typically manifests. ”

    I looked it up and found:

    Click to access HispanicChartbook.pdf

    On page 9, Chart 5 shows that 40% of the Hispanic population in Wisconsin were born in Wisconsin, and that 20% more were born elsewhere in the United States.

    That leaves 40% that were foreign born. That is less than half, and not a majority.

    Therefore Sprite’s statement is false.

    Page 41, Chart 35 may actually be the key as to why fewer children in that population are diagnosed with autism.

  14. HN September 26, 2007 at 19:23 #

    I am trying again… it says it posted my comment, but I can’t see it!

    Anyway, in short I looked up the paper on the Hispanic population in Wisconsin (it is easily the first hit on the suggested Google search). The posting may have hiccupped at that one URL link to a pdf file.

    I saw that 60% of the Wisconsin Hispanics were born in the USA… which makes Sprite’s statement that a majority being foreign born false.

    I did notice a that page 41, Chart 35 is probably the biggest reason why fewer children in that population are not diagnosed with autism. Can anyone hazard a guess of why that chart might be significant?

  15. Sullivan September 26, 2007 at 20:49 #

    “I did notice a that page 41, Chart 35 is probably the biggest reason why fewer children in that population are not diagnosed with autism. Can anyone hazard a guess of why that chart might be significant?”

    First–I had a post go into the ether as well trying to post the link. That’s why I put the google search comment in.

    Interesting chart. I would think that chart 27 (page 32) involving poverty may have something to do with it as well.

    I think the hit-and-run nature of post by Sprite together with the clear lack of actual data or research tells us that he/she was just an attempt to sew doubt.

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