A quiet concession

3 Jun

While much has been made of a certain “concession” lately, it is worthwhile noting that the past month has seen a significant shift in the mindset of people pushing the autism “epidemic”.  In vaccine court it was the petitioners (plaintiffs) who opened with the admission that if there is any group of people with autism as a result of vaccine injury, the number would be so small as to be invisible to epidemiological studies.  (This didn’t stop them from closing with the latest Geier paper claiming that they can see the effect of thimerosal on the autism rates.)

But, this hasn’t been such a sudden shift.  As far back as last November, David Kirby noted:

“Finally, to all those who are going to post comments about the autism rates in California not coming down, following the removal of thimerosal from most vaccines: You are right. The most likely explanation is that thimerosal was not responsible for the autism epidemic.”

Baby steps….baby steps…

That’s my way of saying to those who would bravely rise up in their seats and proclaim, “stop the hate speech!” that the above is progress.  Sure, we still have to continue to endure the “epidemic” language for now.  Why he can’t just admit it in full, I am not sure.  Oddly, Mr Kirby doesn’t put forth a valid suggestion of what caused this “epidemic” of non-thimerosal-induced autism.  He does try a last-ditch effort to prop up the possibility of a thimerosal-induced-autism-epidemic with claims of immigration and pushing the goalposts back to 2011.  

But, I felt I had to acknowledge the fact that even Mr. Kirby is stating that the most likely answer is that it is not thimerosal before I go on.  Because, if one looks at the data just a little farther, one can find a likely answer for why there is a larger number of young people identified with autism than older people.  It isn’t news to us, and it isn’t news to Mr. Kirby and the rest: one likely reason is substitution.  I don’t know which they would try to avoid more, admitting that substitution is a big effect or an MMR jab, but let’s look a the data.  Just a peak. 

Consider  Autism as a function of age in the CDDS (California Department of Developmental Services) data.  Keep in mind, this is service data–i.e. this is a count of who is receiving services from the CDDS, not a count of who has autism in California.  This is not epidemiological grade data.   But, since it has been used so much, let’s move forward, keeping the caveats in mind. (click on the graph if you want to see it larger and more clear)

 

So, Autism count vs. age (data in black), what do we see?  Of course, we see a big peak in the younger ages.  This is the “Tidle Wave” or “Tsunami” or “Insert Other Hate Speech Term Here” that people like to use to make this scary.  But, as you have noticed, I have included the data for “Mild Mental Retardation” as well, in red.   What do we see there?  A dramatic dip in individuals identified with mild mental retardation in the younger ages.  Does anyone believe that something happened in California to reduce the number of people with intellectual disabilities?  If so, they aren’t very vocal about it.

If I were reading this for the first time, I would be suspicious of someone using only one mental retardation category.  Believe me, all mental retardation categories show much lower numbers in the younger age brackets.

This is a clear indication of “administrative substitution”.  [edit–see comments below] Joseph has done a lot of work on the CDDS data in the past and notes (below) that it is very difficult to draw conclusions about substitution from the publicly available data.  However, this is similar to what people have reported in the literature especially using special education data: people with autism have very likely been mislabeled, their autism label was “substituted” for a different label.  They weren’t “missed” as the favorite straw-man arguement would have it, but mis-labeled.

One person in the AutismOne media discussion (as reported by AutismNewsBeat) kept saying, “you ain’t seen nothin’ yet”, implying that the future is going to be very different from the past.  I have to agree, in the future, more adults with autism will be correctly identified.  They won’t be in hospitals with schizophrenia diagnoses, for example.  This will be a good thing.

Frankly, I’d like to see that change come sooner.  I’d like to see adults properly identified and appropriately served now.  We have to move away from baby steps and take bigger steps away from the “epidemic” and acknowledge that unidentified/misidentifed adults with autism are almost certainly out there.

Instead, we have people asking to “Green Our Vaccines“.  The “Green Our Vaccines” idea is a very cute way to mask the typical “epidemic” speech.  But it is the same old story: autism is vaccine injury and new.  Note that almost all of the groups sponsoring the “Green our Vaccines” rally are autism-related.   Sorry to divert to that topic somewhat, but I can’t help thinking that all that effort is being put into that rally by people who actively supress the existance of adults with autism.  I can’t help thinking that the present and the future would be better if they were acting to help everyone with autism, now.

(noted, this has been edited to more correctly reflect Joseph’s opinions on substitution.  Also, I missed another Green Our Vaccines link.)

Advertisements

12 Responses to “A quiet concession”

  1. ebohlman June 3, 2008 at 22:49 #

    This is a clear indication of “administrative substitution”. This is what Joseph has been pointing out for a long time (along with others) in the blogs, and what people have reported in the literature: people with autism have very likely been mislabeled, their autism label was ”substituted” for a different label. They weren’t ”missed” as the favorite straw-man arguement would have it, but mis-labeled.

    I’d take slight issue with the “mislabeled” part. What I see is an artifact of a big difference between service categories and diagnoses: administrative rules require that a person receiving services be assigned to one of a set of mutually-exclusive categories, whereas it’s entirely possible for a person to have two or more diagnoses.

    Thus, for example, a person might meet the diagnostic criteria for both MR and autism (i.e. he’d perform as poorly on something like Raven’s as he would on standard IQ tests), but for administrative purposes he has to be labelled as one or the other, not both. It’s meaningless to talk about him being “more MR than autistic” or vice versa, so the decision is going to be based on things like funding availability, personal preferences of the classifier, or even a flip of a coin. Neither decision could be considered “mislabeling” in that context.

    Your main point still stands, of course: most of the “epidemic” represents an epistemological, rather than ontological, change.

  2. María Luján June 3, 2008 at 22:49 #

    Hi Kev
    Dr Craig J. Newschaffer, PhD has written on then topic of diagnostic substitution, here.
    http://pediatrics.aappublications.org/cgi/content/full/117/4/1436

  3. Patrick June 3, 2008 at 23:14 #

    Off-topic, ABC is carrying a nice lil story about the green vaccine thing. With quite a brouhaha going on in the comments section. )Now back to the post.)

  4. Joseph June 3, 2008 at 23:18 #

    Maria: You should look at Shattuck, which came later, and the subsequent discussion between Shattuck and Newschaffer.

    This is what Joseph has been pointing out for a long time (along with others) in the blogs, and what people have reported in the literature: people with autism have very likely been mislabeled, their autism label was ”substituted” for a different label.

    Thanks for the mention, Sullivan. But to be honest, I’m not sure we’re looking at substitution in CDDS. I don’t think CDDS is a good database to look at substitution. We might be looking at a different phenomenon, interesting in its own right.

    Every child who seeks services with CDDS is supposed to have a mental retardation evaluation. Theoretically, the CDDS prevalence of any mental retardation category should be stable (and I’d say it is at the whole population level). Of course, it’s possible that a lot of mental retardation is going into “unknown MR” these days, which you’ll note is a category that is growing. Also, many autistic children who would’ve quickly been considered retarded in the past might be evaluated more carefully these days. In general there might be an aversion to enter “MR” in the evaluation report, especially for young children.

    Without knowing the details of how an MR determination is done before it is included in an evaluation report, it’s hard to tell what’s going on with your graph there.

  5. Sullivan June 3, 2008 at 23:19 #

    Maria,

    I (Sullivan) wrote this. I’d point out that Shattuck also has discussed autism and substitution in Pediatrics.

    Others have done so as well in other journals. For example, here and here.

  6. Sullivan June 3, 2008 at 23:36 #

    Patrick,

    I think you are talking about this story:

    http://www.abcnews.go.com/GMA/OnCall/story?id=4987758

    Joseph,

    Sorry if I misrepresented what you have stated in the past. Granted, the CDDS data are a difficult set to draw real conclusions from. This is all the more difficult with multiple categories for each child.

    The CDDS autism counts do show that the people qualifying under “autism” now have a much lower fraction with “mental retardation” as an additional category.

  7. Schwartz June 4, 2008 at 00:59 #

    Sullivan,

    I’m not sure I’m reading this properly, but that graph is showing percentages of overall caseload right?

    Don’t we need to get the percentage of cases vs total population to determine if there is an increase in people serviced — and thus indicative of prevalence?

    Not that it detracts from your call to identify adults who have been misdiagnosed. I have no doubt that mis-diagnosis has been widespread.

  8. María Luján June 4, 2008 at 02:18 #

    Sullivan, I apologize
    My web configuration presents the author name very little-and some kind of problems with the change of caps size-however it is no excuse.
    Now, thank you about the recent diagnostic substitution manuscripts you cited, from May 2008. I do think that it is true that there has been mis diagnosis- and not only in USA/UK of course.My point is Is it enough to explain the increase in children/now teens as the only explanation? how all the confounders are considered? MAy be them accounted correctly for?
    Now, there is developmental language disorder, MR and infantil schizophrenia as (potential) misdiagnosis- between others; how may the substitution be clearly assigned in retrospective-such as the recent manuscript you cited?

  9. Sullivan June 4, 2008 at 06:28 #

    I should note that the age brackets are designated by the top age. So a 21-30 bracket would be listed as x=30. That’s why the last data point goes to 100.

    Schwartz, there are a number of ways to normalize this. This way is (a) more simple and (b) includes some balance for changing criteria over time but mostly (c) it is easier for me to look a. (c) is important because if you look at strict prevalence, you find that people with developmental disabilities die younger. CDDS is doing a much better job at keeping people healthy and alive, but it is pretty obvious in the data that there are not enough older people of all DD’s.

  10. Dr. Megan Taylor June 4, 2008 at 18:52 #

    This graph is erroneous. If you are accurately reflecting statistics trying to swap Mental Retardation for Autism-You need to include ADD in the graph. Also, Many individuals with autism do not test as having Mental Retardation. Can you be nonbiased enough to list this addition?

    Please also refer to the current literature and funding for the regressive form of Autism which appears to be from an autoimmune disease. Whether this is from an overactive immune system or something else is unclear at this time.

  11. Ms. Clark June 4, 2008 at 19:01 #

    Dr. Taylor, maybe you need to take a second to familiarize yourself with the California Dept of Developmental Services (the source of the data). Google is your friend.

  12. Sullivan June 4, 2008 at 22:22 #

    Dr. Taylor,

    ADD is not included as a qualifying category for services by the CDDS. Even if it were, I don’t believe this would be relevant at this time.

    Many children with autism do not have mental retardation, as you state. Many individuals with autism do not have mental retardation, as you state. That is actually a very important fact that has been explored on blogs by myself and others.

    The interesting fact is that the percentage of people identified with autism who have no mental retadation is increasing with time. The younger generation has a much larger percentage of autism without mental retardation than do the adults. Again, this is amongst those who have qualified for services.

    Given that, the question has to be asked–are the autistic kids really different than previous generations or is there a difference in identification and qualification for services?

    Oddly, niether of those two possibilities are consistent with the “autism is vaccine damage” discussion, which puts forth that there are really more individuals with autism and they are worse off than previous generations cognitively and health wise.

Comments are closed.

%d bloggers like this: