Saturday, February 03, 2007

Here's Where Rick Rollens Is Wrong

There has been some buzz lately about California DDS caseloads in older cohorts. See, for example, this post by Kev with graphs of caseload increase in the 62-99 and 52-61 cohorts. Interestingly, in the 1990s there wasn't just a lot of growth in the numbers of autistic little ones in the system, but autistics of all ages apparently.

JB Handley noted that the 62-99 caseload is still rather small, however, and he's right of course. Rick Rollens wrote a rant along the same lines, which follows.

I for one am really sick and tired of the current stock of "the world is flat" thinkers who continue to spew the notion that there has been no real increase in autism, that the prevalence and incidence of autism has remained the same all these years, and in years past we simply over looked thousands of persons with autism, and today we finally found them. Bottom line: they have always been here. I believe that applying a little common sense and facts provided by our California Department of Developmental Services (DDS) we can once and for all drive the spike of fact and truth into the heart of these modern day flat earth society members who may be living in our world, but seem to be far removed from it's obvious realities.

Premise : If there has not been a true, dramatic increase in the incidence of autism creating an autism epidemic, then we should have among us a proportional and sizeable number of adults with autism. Since DDS's data only includes those persons with autism who have a professional diagnoses of full syndrome (i.e. worst form) of autism, we can assume that hiding, misplacing, loosing or not recognizing thousands of adults with moderate to severe behavioral issues, extremely apparent bazaar social behaviors, and moderate to severe language deficits would be impossible. We are not talking about a person here who melds into society and is not noticed and/or is not in need of major supports and assistance. They would have to be somewhere, and somewhere for adults likes these in California would either be in the community or in an institution. Now I guess it is possible that some could be homeless, but as far as I know there has never been reports of large numbers of persons with moderate to severe autism running amok through homeless shelters and soup kitchens, if they were there, I am sure we would have heard about it by now. California's developmental services system has been in place since 1969...38 years for adults with autism and their families to find their way into the system.

Facts: According to the latest data from DDS, there are 2,809 persons with autism in California's DD system...16% or 5125 are adults over 22 years old. That means for the autism population that 84% are under the age of 22, with 78% under the age of 18. It is a remarkable fact that adults with autism make up only 16% of the autism population, while in the same DD system 55% of the cerebral palsy population, 61% of the mental retardation population, and 63% of the epilepsy population are adults over the age of 22 years old. Using an average of the CP, MR, and epilepsy populations, it is safe to assume that adults over the age of 22 with moderate to severe autism should constitute roughly 60% of the total autism population, not 16% as they do and have for many years.

So, rather then having just 5125 adults currently in our system with full syndrome autism, we should have somewhere around 19,685 adults with full syndrome autism if you believe the flat earth folks that there has been no real change in the incidence of autism. We do know that there are a very small number of adults with autism in California's five remaining state institutions... 358 to be precise. So doing the math leads me to these conclusions:

Based on the fact that roughly 60% of adults with the three other conditions served by California's DD system (MR, CP, and Epilepsy) are over the age of 22 years old, and recognizing that we have only 5125 (16%) of the autism population over the age 22, add in the 358 who currently reside in state run institutions, we are short 14,202 adults with autism in our system that should be there! That number represents 43% of the entire current autism population in California's DD system.

43% of the population missing? Over 14,000 adults in California suffering with full syndrome autism and no one has seen or heard from them? Is this possible, or is it that they simply do not or ever existed. Is it also a fact that DDS has documented, in two separate Reports, that California's autism epidemic began roughly 22 plus years
ago.

Believe me when I say....The world is round.


I think the flaw in Rick Rollens' argument is obvious: He assumes that CDDS autism counts are a good approximation of the number of autistic persons in the state of California for any age group. This is an incorrect assumption, and not just probably incorrect or a little bit incorrect. I will now provide a numerical argument as to why.

The DSM-IV-TR prevalence of PDD in the population with mental retardation is about 16% (source). This estimate appears to be conservatively valid in adults, going back at least 24 years (source).

Let's now take the mental retardation caseload in the 52-61 cohort as of Q4 2006, which is 10,632. We should thus expect that 1,701 CDDS clients have PDD with mental retardation. It seems to me that these 1,701 autistics in the 52-61 cohort could easily have an "autism" classification in their records. Instead, we find that only 325 do. CDDS has missed at least 80.9% of all autistics in that cohort. I emphasize "at least" because among young autistic clients, mental retardation is relatively rare.

This all comes to show that CDDS ascertainment is nowhere close to accurate, and it is least accurate in older cohorts. In reality all the California DDS report can give us is an approximate lower bound on ASD (not even autistic disorder).

Rick Rollens admits his argument is based on the following premise:

Since DDS's data only includes those persons with autism who have a professional diagnoses of full syndrome (i.e. worst form) of autism, we can assume that hiding, misplacing, loosing or not recognizing thousands of adults with moderate to severe behavioral issues, extremely apparent bazaar social behaviors, and moderate to severe language deficits would be impossible.


He is clearly assuming that (1) if an autistic person is not registered with CDDS, then they were "missed"; and that (2) all autistic persons registered with CDDS have "autism" in their records. Neither of these assumptions have ever been determined to be factual, which is a fatal flaw in this type of argument.

Also, Autism Diva discussed the "full syndrome" characterization. It's not really the way Rick Rollens would have us believe.

So, yeah, the world is not flat; but neither is CDDS autism ascertainment, obviously.

8 comments:

  1. Hi Joseph I am curious about how rare mental retardation is in the younger clients. It seems to me your statement does not jibe with the facts given in the 2003 update to the CDDS california report. It does show that in December of 1987 that about 15% of the regional center clients had no mental retardation. In December of 2002 this number increased to about 55%. Of course there were also levels of mild to moderate and profound retardation and the profound but these numbers just reporesent no retardation in autistic clients whatsoever. This means that as of a few years ago about 45% of clients diagnosed as autistic had at least some degree of retardation albeit mild in some cases. I would not consider this "rare", even though it is true that retardation seems to have decreased significantly in these clients and rollens and others would have to explain why the "epidemic" would include such as significant increase in non-retarded autistic persons. The number in the regional centers is also higher than the 25% reported in the literature. Part of the reason for the increase may be the broadening of diagnostic criteria and inreased awareness that autism can occur in milder cases and among nonretarded persons.

    However, the 45% number may still be misleading due to the great increase in children coming into the regional center at earlier ages likely due to changes in special education legislation and court decision making it easier for nonprofessionals to set up shop and practice lovaas therapy. There are large differences in assessment of intelligence in children under the age of 5 than in older let's say older than the age of 7, so a more accurate figure might be the rates of retardation in chldren over 7 and this could well give a number higher than 45%. in any case I don't think your statement that retardation is rare in these clients is accurate. As an autistic person who does not like my disability (unlike you) it seems statements like these trivialize my problem, even though i am certainly not retarded in academic areas but in perceptual motor tasks and in social tasks and maybe other areas i could be regarded as somewhat retarded.

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  2. What I'm referring to is that about 25% of the whole population of autistics have been evaluated as having mental retardation as of 2006. In 1992 that was more like 65%. The drop has obviously been driven mostly by caseload increase in the younger cohorts, so the assumption that among young autistics in the system that prevalence is even lower than 25% is probably correct. I call that "relatively rare" because it means that a vast majority of autistics as recognized in younger cohorts don't have mental retardation. In older cohorts, that's probably not the case still.

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  3. I am still curious how valid rates of mental retardation can be assessed in the younger cohorts, particularly those 5 years old or younger since, as i said before, since intelligence (as measured by IQ tests) can't really be given in these age groups, at least the type that older children get, so i suspect your figures are an underascertainment though i realize i can't prove it

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  4. It's possible that assessment has gradually improved, explaining some of the drop. I'm assuming error would usually be in the direction of mental retardation. There's growth in the "Unknown mental retardation" category too. This, however, wouldn't explain drops in the prevalence of epilepsy and "severe behaviors" among autistics. I'm not sure age bias explains it either. If it did, we should eventually see trends in the other direction as the population levels off in the older cohorts.

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  5. QUESTION

    I have alway been extreamly uncomfortable with being touched by my parents.

    A long hug from them feels awkward. If I was crying when I was little and my mom tried petting me, it felt like I was being molested (and I didn't even know about that sort of thing yet.) I don't like it when they look at me in serious ways (like worry).

    I'd be happy to recieve such things from a lover. I am OK hugging friends, even if I do not know them very well.

    Do I have aspergers, or any type of autism, or any kind of mental disability?

    I've read that aspergers causes people to dislike being touched. It also causes a lack of eye contact and emotion when speaking to people. I had to train myself to do these thigns. It has never felt natural.

    But I've also heard that the lack of eye-contact is a trait in normal males (I am female).

    Am I disabled, or a transexual (I am still attracted to men, even though I also act like them in several ways), or what?

    If someone could e-mail me an answer, that would be appreciated. (Cheeseborg333 @ AOL.com). Otherwise, I'll just come back to this site to see if anyone has posted an answer.

    Thanks!

    --"Rachel"

    (Sorry to intrude on your blog; I could'nt find anywhere else to ask this.)

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  6. I stumbled across this site while looking for some articles by the Geiers.

    Your viewpoint is interesting. I can relate to the idea that you feel that your autism is not a detriment.

    I haven't had a a chance to read a lot of your posts and the comments people have made about them, but it appears to me that you are saying that mercury cannot cause autism. On the other side, the anti-mercury folks argue that all cases of "autism" are caused by mercury. (Or that's at least the way you portray them -- I'm not sure which is the case.)

    Quite frankly, both sides seem to be mixing apples and oranges. Some of your posts seem to indicate that you think that no environmental agents have any effect. And I haven't quite been able to put my finger on just what it is that the anti-mercury folks are trying to prove.

    That said, children today are probably exposed to more mercury in the womb, or through breastfeeding than they were through immunization.

    Fetal exposure through the umbilical cord would stop once the child was born, but it's during the pre-birth neurological development that mercury would probably have its greatest impact.

    In such a case, the child could start eliminating mercury fairly quickly, but the "damage" would already have been done. And once the mercury were excreted from the child's system, there would be very little left in the blood to measure. Whether or not any remained in the body attached to bones, etc., would be another issue, but if there were none, then chelation therapy would be uncalled for.

    I think heritability is definitely a factor, but that doesn't necessarily mean that ASD is actually inherited. A predisposition to ASD could be inherited. Such a predisposition could be triggered by environmental factors (whether they be vaccinations, diet, or exposure to pollutants).

    One of the points that I did not see mentioned in any of the posts or comments that I read is that mercury is not the only thing that we are exposed to. That's obvious.

    Other chemicals could act as triggers for mercury susceptibility. That is, someone born with a particular genetic vulnerability to something (whether it be mercury or something else), but not have that vulnerability triggered unless they were exposed to another, specific substance first. Or a chemical might have a certain effect only when triggered by the presence of a catalyst.

    The following may sound like non sequiturs because I don't have the statements that I thought were overly broad, incorrect, or that I want to affirm.

    The symptoms of "heavy metal poisoning" can vary a lot depending upon the specific metal. Again, some people are more susceptible while others may be more resistant. And whether a particular symptom manifests itself is often very dose-dependent.

    Just because the symptoms from such exposure are not the same from one person to another doesn't mean that they weren't affected by the same type of substance.

    Along the same lines, mercury (or any environmental agent) could affect different portions of the brain during fetal development. That would in turn affect different abilities.

    Questions about how mercury poisoning might trigger savant capabilities: I think you might be selling people with ASD a little short here. Let's assume that the "problem" isn't the normal expression of an "autistic" gene, but an overexpression. That is, there are certain "autistic" behaviors which are actually beneficial to survival. But "too much" of a certain behavior could take someone over a certain threshold. (I would not claim any idea as to what such a threshold might be.) One could compare it to Vitamin A. Too little, and one experiences certain illnesses (and depending when that deficiency occurs might determine whether the illnesses had a temporary or a permanent effect). But we know that if something is good for you, more is better. ;-) Too much Vitamin A can kill you. After all, everything is toxic at the right dose.

    (Among the stereotypical behaviors that would be beneficial. Being able to stay still for extended periods of time?)

    Anyway, both sides seem to be making the same assumption that what causes the more stereotypical autism symptoms also causes the savant capabilities. That's an understandable error when you see them displayed together.

    I suspect, however, that autistics have existed for quite some time, as have savants. Perhaps there's an interconnection, perhaps not.

    Chemical exposure causing changes in personality. Oh, let's start with methamphetamines, cocaine, LSD, alcohol, marijuana, and even caffeine. Or take Needleman's research that lead might trigger violence in populations that are overly exposed to it.

    On the flip side, you may have seen the recent news that some scientists believe that the Hatfields & McCoys feud was kept alive because one side was genetically prone to emotional and violent outbursts.

    How many people are born with some sort of heart defect, but don't find out about it until they're much older (e.g., the runner, Jim Fixx (sp?)).

    Our brains are very complex. There's a lot that can go wrong (but even when things do go "wrong" that change is sometimes an improvement).

    But relying on some of the statistics I've seen bandied about is ignoring the fact that a lot of variables are involved. All of us carry more dioxin and polychlorinated biphenyls and other persistent chemicals in our bloodstreams. Who knows what effect those might have on brain chemistry?

    Look at nitric oxide. It's only been within the last decade or two that scientists have discovered that it plays an important role in cell communication.

    Or maybe it's a virus that hasn't been discovered. Maybe a certain genetic code causes a mistake in someone's parents' DNA. That mistake then makes the person more vulnerable to mercury poisoning. Perhaps thimerosal then makes that child more vulnerable to attack by a particular type of virus. Or maybe it makes the child extremely allergic to something. The final element then triggers ASD. ???

    And as long as I'm thinking out loud, what is ASD is part of an even larger spectrum? Just for the sake of argument, what if the cause (whatever it is) also damages the liver? If the cause were a toxin, there would be a pretty good chance that it might. What if that in turn causes obesity or fatty liver disease? What if it were to damage the kidneys or the adrenal glands?

    Well, it's a good thing I kept that short....

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  7. Rick Rollens has failed to consider other places in which autistics might be found, such as Silicon Valley, engineering or manufacturing, the music industry, NASA, universities, and other likely places.

    And he fails to consider that autistics often can function well in society even when moderately visibly disabled. There are, for example, many engineer jokes in which the behaviour of the engineer is clearly autistic.

    P Buddery

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  8. sites like this are obviously for the uninformed and heartless ( I found it by accident). I'm appalled at the insensitive attempts to sound as if you know about the autism epidemic. This is likely a site funded or at least influenced by the perpetrators of these crimes against humanity. For those of you who share the belief autism hasn't increased, go back on your meds, and return to the asylum.

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