Of Carpets and Carpetbaggers or The Mismeasure of Autism.

If you live in the UK you will appreciate the frustration that I feel in a carpet showroom when the carpet roll is 12 or 18 feet wide but is sold by the metre. How am I supposed to make sense of metric and imperial measures when they are mixed? Of course I am not supposed to. I am supposed to ask the salesman who will perform all the calculations for me and offer the firm's free fitting service providing I buy the necessary underlay, grippers and how about the optional stain guard treatment, sir?

ADVERTISING AUTISM

I felt a similar sense of frustration when confronted by the "Put Children First" ad in USA Today last Thursday. It starts by claiming a 6000 per cent increase in autism. Even if this were true what does it mean? I asked a few people. Most of them thought it meant there were six thousand times as many people with autism and I am not sure that they all fully understood or accepted my explanation that it actually meant sixty times as many. 6000 per cent does mean 60 tmes as many. But it sounds bigger and scarier.

The ad continues:

We believe the Centers for Disease Control (CDC) knows that the ambitious
immunization schedule begun in the 1990s, nearly tripling the amount of
mercury injected into our children, created an epidemic of autism in America.
[…]

As long as the CDC denies that mercury from vaccines is responsible for this epidemic,proper treatment will never be made widely available to the more than
one million American children who could be treated today.

So it all began 16 years ago and now there are over a million autistic children. According to the US census there were 76,454,410 children aged 18 and under in the year 2000. But the birthrate has been falling. It used to be just over 4 million a year. Now it is just under 4 million. So I am guessing that there are less children today. Let us say 75 million. And one million of those are autistic!

A BIG PROBLEM

That was enough for me to visit the Put Children First web site and find out more. But then I hit a BIG problem. The website is arranged in chapters and in chapter one I read

In the 1980s the incidence of autism was somewhere between 1 in 10,000 and 1 in 5,000, today it is 1 in 150.


My BIG problem was that the ad in USA Today had claimed one million (out of an estimated 75 million) children with autism. That is the same as saying 1 in 75. But they just said it was 1 in 150 which makes only half a million. Which figure should I believe?

I felt like I was back in the carpet shop trying to juggle incompatible measures in my head. I do not think the number of children in the USA has doubled since 2000. I think we would have heard about it on the news. So one of those figures had to be wrong. My guess is that the advertising people got the figures wrong and it was too late to do anything about it so they put the correct figures on the website. You would have thought they could have pointed that out to people, though.

INCIDENCE OR PREVALENCE?

So I thought I better check all the figures just in case. First I had to sort out what incidence means. When you are dealing with statistics it is important not to get incidence and prevalence muddled up. Incidence refers to the number of new cases in a population over a period of time. Prevalence refers to the total number of cases in a given population at a specific time.

If Put Children First, Generation Rescue, Safe Minds and all the other organizations that believe we have an autism epidemic caused by mercury in vaccines are right then the incidence ought to go down very quickly now that nearly all childhood vaccines are mercury free. But the prevalence will go down a lot more slowly becauase of all the vaccine damaged children already out there; especially if they do not get the treatments that are supposed to cure mercury induced autism.

THE CURIOUS INCIDENCE

With this in mind I checked the figures for autism incidence before all the mercury went into the vaccines. And I checked the figures with Mark Blaxill, who is a board member for Safe Minds. Not with him personally, of course. I checked them with a presentation he gave to the Institute of Medicine. This brought me back to my BIG problem again. Because Put Children First had said on their website that incidence used to be between 1 and 2 in 10000. But the studies of autism from that period in the USA that Mark Blaxill quoted to the Institute of Medicine were nearly all over 3 in 10.000. (One study was just under 2.5 in 10,000 and the overall average was just under 3.1 so we'll call it 3 in 10,000 to be fair.)

Now, I can understand the advertising agency getting their figures wrong. But when Put Children First gets it so wrong on their website I begin to wonder. And in case you think I am quibbling over numbers like is it between 1 and 2 or is it 3, just think. If we were doing the sums today on 75 million American children, 1 in 10,000 = 7500 children and 3 in 10,000 = 22,500 children. That is a big difference. OK, it is not so big as the difference between the 1 million mistake in the ad and the real figure of 500,000, but it would still be a big difference for those kids and their parents.

PIC 'n' MIX AUTISM?

According to the Centers for Disease Control and Prevention (CDC) there may be a prevalence of 1 in 166 which is the same as saying 6 in 1000. The Medical Research Council in the UK (MRC) agrees. It puts the figure at 60 in 10,000. All these figures describe an identical prevalence rate but are written differently. This does not matter when the figures are the same. But if you are comparing 1 in 150 with 66 in 10,000 which is the biggest?

Actually 1 in 150 and 66 in 10,000 are both the same. Which brings me back to my BIG problem. Put Children First seem to be using the smallest figure they can find for how autism used to be (1 in a 10000) and the biggest figure they can find for autism today (1 in 150) so that when you do the sums you get that big scary 6000 per cent in the ad.

But the ad got the number totally wrong. So maybe the percentage is wrong as well. I checked.

  1. From 1 in 10,000 to 66 in 10,000 is 66 times bigger or 6600 per cent.
  2. From 1 in 10,000 to 60 in 10,000 is 60 times bigger or 6000 per cent.
  3. From 3 in 10,000 to 66 in 10,000 is 22 times bigger or 2200 per cent.
  4. From 3 in 10,000 to 60 in 10,000 is 20 times bigger or 2000 per cent.

So the only way you can get the 6000 per cent figure in the ad is with option 2 where you have to pic 'n' mix the figures from Put Children First and the CDC. I do not trust that 1 in 10,000. If the figure had been that low in the past I am sure Mark Blaxill would have mentioned it in his talk to the Institute of Medicine. So I am going to trust his figures for autism in the past and the CDC for autism today. My pic 'n' mix is option 4, 2000 per cent.

CARPETBAGGERS For AUTISM?

Put Children First's numbers for autism seem to be different from everybody else's. Their ad has doubled the number of autistic children and tripled the percentage figure. Now, Put Children First is an offshoot of Generation Rescue that was set up by J.B. Handley. He is a very astute businessman who would surely have to approve those figures before spending $100,400 on a full page ad. And what about Robert Kennedy? Either he or his office must have looked at those figures before letting them put his name on the ad. But there it is in big letters just after the 6000 per cent.

IT’S TIME FOR THE CDC TO COME CLEAN
WITH THE AMERICAN PUBLIC…”
– Robert F. Kennedy, Jr., March 2, 2006

You do not get to be as rich or successful as J.B. Handley and R.F. Kennedy Junior by making mistakes like that. They have to know that those figures are wrong but they are carrying on because it suits their purpose. I do not know what that purpose is but they are less like the carpet salesman who began this post and more like carpetbaggers.

The term "carpetbagger" is used to describe "an outsider who moves someplace to exploit the natives and enrich himself at their expense," or "politicians who move to a new jurisdiction solely to meet a residency requirement for holding public office."

Now I am thinking that if I cannot trust their figures why should I trust anything else they say about autism, mercury and the CDC? What do other people think?

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21 thoughts on “Of Carpets and Carpetbaggers or The Mismeasure of Autism.

  1. It’s amazing how often prevalence increase is argued that way. Either they don’t understand why it’s wrong because they simply don’t get it, or they do understand and are misleading the public on purpose.

    The prevalence of classic autism is about 3 in 10,000. This varies somewhat from one study to the next, but it’s around this number, and there’s no reason to believe it has changed in any substantial way.

    The prevalence of Asperger’s syndrome is 1 in 166 or so (60 in 10,000).

    They compare apples and oranges and think they are making an argument.

  2. I think PDD,nos is the largest group.

    If you got 1000 teens and younger diagnosed on the spectrum and asked their parents how many different diagnoses the kid had had, you’d find that they’ve been in several categories, especially the PDD,nos kids. PDD,nos is very fuzzy.

    The parents talk about having received a “charm bracelet” of dxs, because the child was so NOT obviously autistic.

    The article on my blog now says that “autism” is a type of childhood schizophrenia, it was written in 1965 and published in the very famous at the time, LIFE magazine.

  3. When Alex was dxed (1990) he was diagnosed “PDD-NOS” as I was told “we don’t diagnose autism until the child is 5″. He’s since been Dxed “Autistic disorder” (Autism).

    I wonder if that still goes on anywhere…

  4. Hi jypsy,
    You read my blog! I feel like I ought to curtsey or bow or something :-)
    My son was diagnosed with AS because Judith Gould thought the local authority would not understand an autism dx in a kid as bright as Mattie. They did not understand the AS dx either. :-( Never mind. He is doing fine now. How is Alex?

  5. I thought 1 in 166 was the prevalence of all pervasive developmental disabilities (autistic, asperger’s and pdd-nos). It bothers me that GR and their ilk will use prevalence figures for the entire autistic spectrum for scaring purposes, and then dismiss the views of people who fall within that group on the ground that the people are “not really autistic.”

  6. I always curtsy when jypsy enters the room, it’s sort of a reflex. :-) Not that she expects it. I salute Anne. If it’s Kathleen, I click my heels, twice. Amanda gets a bow, and Frank Klein, a kiss blown in the air (he hates that). Jerry Newport gets a scowl and maybe a tounge stuck out at him. You have to recite poetry to Larry Arnold, or mention Bishop Berkeley. Jane Meyerding, inquire of her cats and bears. I’m always impressed when Dinah shows up, but I don’t know her very well. Ralph Smith, I don’t know him very well, either but he does some fabulous art and he’s quite the humanitarian. Michelle, is awe inspiring, but I have to try to make her laugh with “haggis” about once a year.

  7. He doesn’t get it from me. I was a gymnast. His autism is a very good mix of me and his undiagnosed dad though.
    My husband, outwardly very laid back, can run (short distance) very fast and skate even faster. He could skate on a river forever….
    Our (AS) son Ben is a wrestler & soccer player, he too can display an incredible burst of speed and has recently joined Alex in some 5K races.

    I read your blog and read you on other blogs and at least one list. I’m usually somewhere in Camille’s shadows… we are sisters, separated at birth (or so the story goes) so even though we’re physically in North America’s SW and NE, on some other level we’re much closer than that. Sometimes I’m in other’s shadows (no real reason *I* couldn’t have posted all that stuff Jane did from me recently…)

    I used to live on Stanton Road in Ottawa.

  8. Here in the UK half the drains and man hole covers have my name on them. They were made at the Stanton and Stavely Ironworks in Derbyshire. No relation unfortunately so I am not going to inherit the family fortune.

    And the autism connection is that they also made lamposts and, according to Larry Arnold, lamposts are a special interest of Digby Tantam. Though you never can tell with Larry.

  9. Right… sorry, miserable cold – my brain is fogged in. Let me try that again…. Epsom Salts of Epsom Wells… my grandfather (Norman) was from Epsom Wells (as was his wife). They moved about (as their family expanded) until settling in Sidcup where my dad was born.

  10. So this is where the party is. I got here by the Diva/Prometheus route. Glad to see this article, Mike. Camille, I happen to know a certain person has a weakness for fart machines (if all else fails). jypsy, I have a cold too – cosmic!

  11. Mike, not a let down at all. Currently I’m researching the highly ambitious CADS hypothesis (Canadian Autism Drag Show). Handley and Kennedy “carrying on”? This is perfect. Kirby’s falsetto wafting across the border? Divine.

  12. Uh…which would make my writing uber trash compared to anyone else’s (a la Geier, really). You’ve got nothing to worry about. [grins]

  13. Thanks for this very thorough consideration of the statistics – and for the run down of the jargon. (No, I wouldn’t know that 6000% means 60 times!!) It certainly demonstrates that journalists don’t know what they are writing about and mix up stats relating to AS/ASD without even realising there is a difference. (Until you get used to it, how do you know that AS doesn’t mean Autistic Spectrum!? Sometimes it does even tho the purists will only use AS to mean Aspergers Syndrome. Am I right?)

    I’m still a new kid on the block. My son is suffering – not because of his AS/HFA but because the school system is totally inadequate in educating teachers how to make the classroom an emotionally safe place so he can learn. Hey – they’ve even made ME terrified of entering the place and I expect HIM to handle it. (Shakes head in disbelief) I’ve decided we’re meeting up during the morning to have a debrief – wish me luck!!

  14. Pingback: centerz » Blog Archive » Of Carpets and Carpetbaggers or The Mismeasure of Autism.

  15. As a mom of a child with ASD and the owner of a support forum, I get so angry when I see things like this. We try very hard to promote understanding of autism, to educate anyone interested and to provide support for those that have autism in their lives. I work very hard to try to keep current of various studies and research and spend hours verifying information. If I can not verify the information I will not use it, if one of our members or visitors asks about that information I let them know that at that time the information could not be verified and should not be accepted as fact until it is.

    I checked the “Put Children First” website and it does more harm than good to promoting an understanding of autism. After looking at that site, I can not give it any credibility, it’s a group of politicians and celebrities getting their names and picture in the paper while trying to show just how “concerned” they are while doing absolutely nothing to help.

    The fact is that in 1999 mercury stopped except for some flu vaccines. The fact is yes there were supplies of old vaccine that didn’t expire until 2003. All (except for the influenza vaccine which can be available without mercury) preschool vaccines for childhood diseases are mercury free. If mercury was the cause of autism it seems to me that there would be dropping in new cases.

    Part of the rise in autism has been to do the broadening of the spectrum (it does now include Classic Autism, Asperger’s Syndrome and PDD-NOS) and better diagnostics. The reasoning for using the smaller stat, 1 in 166 vs 6 in 1000 is a matter of semanics. If you hear 6 in 1000 then you are more apt to think “well that’s not many at all” where 1 in 166 breaks it down to a number that hits you in the face. What irritates me is that this number includes all forms of ASD and many people fail to understand that ASD comes in different forms, severity and each child on the ASD spectrum is affected in different ways.

    The fact is at this time there is no known cure or cause of autism, there are some promising areas of research but it is going to take time.

    People often fail to understand that just like cancer, ASD comes in many forms and may have many different causes so even if a potential “cure” is found it may not work on all.

    Sorry about the rant, but I live, eat and sleep with autism every day of my life. Every day I’m reminded that my child may not ever lead a fully independent life and worry about what will happen when I’m gone.

  16. Hi suzanne
    If that was a rant then feel free to rant some more. You make a perfectly reasonable case. It is sometimes good to remind ourselves that the majority of parents are reasonable people who want help for their children but are not taken in by the hyperbole of the mercury militia.

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