Friday, January 9, 2009

Dr. Hertz-Piccioto: Perhaps special education is the artifact you are looking for

A recent study that has just been published by Dr. Irva Hertz-Piccioto is making headlines in the media and is getting a fair amount of coverage in the autism blogosphere. It is another attempt by the MIND institute to show that the increases in autism admissions to the state of California regional centers are not due to increased awareness, loosening of diagnostic criteria or people immigrating to the state of California to get their superior autism services. It is not so dissimilar to the study that her colleague Bob Byrd came out with several years ago. I must concede I have not read the study, which just came out in a journal called Epidemiology recently so perhaps I can't totally comment on the design of the study. However it appears that neurologist Stephen Novella has read this study and is commenting on it in his blog.

Though Dr. Hertz-Piccioto has stated to the media that it is time to start looking for something in the environment, she does not appear to use the word environment in the actual study itself. She apparently uses the word artifacts. What artifacts might these be? Since Dr. Hertz-Piccioto is a professional epidemiologist, if there has been an increase in something in the environment that took place starting in the late 1980s to the present, then I suggest she look for it, study it, show how it relates to autism and publish it in a peer reviewed journal. Some of the candidates that she mentions to the media are pesticides and heavy metals. Both of those seem farfetched to me, since most of the biggest increases in the California prevalence numbers have come from urban areas rather than rural areas. It seems more likely that exposure to pesticides would be a problem in rural areas, so if anything it would seem there is a negative correlation between autism increases and pesticides. Also in light of Margaret Bauman's published study on the differences in the type of symptoms and neurologic brain impairments between autism and mercury poisoning as well as other heavy metals this seems to be farfetched also. The CHARGE study and the MARBLES study have been going on in California for many years. As far as I know they have not isolated anything in the environment that is shown to be associated with autism increases.

One of the people who founded the MIND institute almost entirely on the state of California Taxpayer's dime is Rick Rollens. This is a man who insists that his son, an extremely low functioning autistic, was somehow poisoned by vaccines and has a known association and friendship with SAFEMINDS and possibly other vaccine groups. Also the head of the MIND institute Robert Hedron, when I heard him speak at the ASA national convention in Florida last summer quoted the 1 in 10,000 prevalence of autism as a 1994 figure. Actually it only comes from one study done by Darrold Treffert that was published in 1970. I wrote about this in another gadfly post it would seem that it is possible the MIND institute is quite biased and has serious conflicts of interest in that at least one of the persons who helped create it has some sort of relationship with people who are litigating against vaccine companies on the premise that their children's autism were caused by vaccines. They are basing part of their evidence on a supposed temporal relationship between vaccines and a great increase in autism numbers. I do not know if Rick Rollens is one of the actual litigants, but he is mentioned in David Kirby's book evidence of harm as having an association with these people. I have met Mr. Rollens who angrily insisted that his son's autism was caused by vaccines. As a California taxpayer with autism, the MIND institute's studies and ready access to the media are troublesome to me.

Perhaps there is another artifact that caused this great rise in autism numbers though, namely special education. Just as there were large increases in autism in the early 1990s when more vaccines were added to the mandatory schedule, the IDEA (formerly the education for all handicapped act) was passed and was amended including autism as a disability in 1991. Coincidence? Perhaps so, but one must keep in mind that there are several studies that now refute the autism vaccine connection. To the best of my knowledge there are no studies refuting changes in special education legislation, making it easier for those with an autism diagnosis to obtain services as being responsible for the rise in autism diagnoses. Also, the Shannon Carter decision by the supreme court in 1994 paved the way for taxpayer money being able to legally pay for uncredentialed personnel to work with autistic children. This decision was a precedence for the decision in the Malkowitz case which paved the way for uncredentialed people to administer Lovaas ABA.

Though, as far as I know, as I said before, no studies refute the special education hypothesis, there is one peer reviewed publication by James Gurney in Minnesota suggesting a temporal relationship between changes in special education law both Minnesota state law and federal law and increases in autism prevalence in this state.

Gurney's study, the lack of evidence for vaccines or any other environmental cause of autism prevalence increases, I feel, suggest that perhaps it is time that Hertz-Piccioto and other epidemiologists perhaps change their focus and look for this as at least a partially responsible culprit.

9 comments:

Autism Reality NB said...

Jonathan

Simon Baron Cohen has been quoted by TimesOnLine as follows:

"Studies of twins have established that it is not 100 per cent genetic, since even among identical twins, when one has autism, the likelihood of both twins having autism is only about 60 per cent. This means there must also be an environmental component, but what it is remains unknown."

Do you disagree, in any significant sense with SBC's reasoning or conclusion?

jonathan said...

Well, I don't necessarily totally agree with the comment since there is such a thing as epigenetics in which the genetics could change in the womb somehow and identical twins are not completely identical in every respect, e.g. identical twins don't have the same fingerprints. On the other hand, I don't totally disagree either, since environmental factors that happen during fetal development could certainly account for discordance in identical twins. The question is, what are the environmental factors? I think thalidomide was found in association with autism and some studies of congenital rubella were also found in association. It is not likely that genetics plays a 100% role in the etiology of autism and there could be some combination of genetics and environment that would cause certain types of autism. I am not enough of an expert to know all the facts of course. However, I don't think any of the experts (meaning people with far more expertise than myself) have shown anything significant in the environment that would cause a child to become autistic. I welcome such research. I don't think the MIND institute so far has done a very good job of it and as I said in the post being a resident of the state of California where the MIND institute was largely created at taxpayer expense that concerns me. I hope that answers your question.

Stephanie Lynn Keil said...

Finally, another rational person in autism blogging. I haven't found many, but yours is on my list.

Anyway, I am severely autistic and one of the reasons I came to the online world was to find other severely autistic people, but come to find out I'm one of the few that actually has it (as Amanda Baggs and Crew are complete frauds).

I don't have much speech and mainly type through a computer. I have never used facilitated communication and believe for the most part that it is BS, except for the very few that have moved to completely independent typing and admit to obvious signs of severe autism (unlike most FC users which deny autism and that they are really a normal person trapped in an awkward body). I can't work and go to my local mental health center for intense treatment and I only interact with people there or on my computer and am not really interested in other people. And I still have problems having conversations my computer and my severe problems with language are probably quite pronounced.

One thing I can applaud Simon-Baron Cohen for is for promoting "Mindblindness" as a deficit in people with severe autism. I have severe autism, thus severe mindblindness, which was the main reason I didn't communicate for years. What's the point if you think everyone thinks exactly like you (and are more like furniture than people)? It didn't even occur to me to tell people what I was thinking until I was 18 (I'm 20 now). I still don't truly understand the function of communication, but I do it for information passing. I also have severe problems with my own "sense of self," which, according to the theory of mind theory, is a result of mindblindness.

I can recall Lucy Blackman asking the question, "Why, when I don't know what you're thinking, I lack Theory of Mind, but when you don't know what I am thinking it's because I am autistic?"

I find the FC and Neurodiversity culture very dangerous because they promote that proven scientific theories about people with severe autism (i.e. mindblindness) aren't actually true. And their proof is that they are "autistic" and therefore, they know. They take precious funding and use it to research those with HFA/AS rather than to those with severe autism and then promote that what applies to people with severe autism isn't true because it doesn't apply to them who has had a job and who can talk. I realize that those with less severe autism might not suffer from mindblindness, but as a severely autistic person I do, and it's very damaging to people with severe autism to have people who are "neurotypical" enough to understand many things political and social (I don't understand anything political/social) speak for people with severe autism.

SM69 said...

I think there are a few inaccuracies in your recent post:

Your wrote: Since Dr. Hertz-Piccioto is a professional epidemiologist, if there has been an increase in something in the environment that took place starting in the late 1980s to the present, then I suggest she look for it, study it, show how it relates to autism and publish it in a peer reviewed journal.

That is not the field of expertise of epidemiologist- epidemiologists look at associations between factors using a range of statistical arguments to evaluate if the association is more likely to occur by chance or be related. Factors which have statistical association are not necessary causally linked.

You cannot demonstrate a cause-effect with epidemiology- you can only argue, be guided…, yes, this might be the case, or no, this is unlikely the be the case. That’s all.

To demonstrate a link, you need to recreate a disease, you need to recreate autism with the cause(s) you suspect to be at play. And this is not the expertise of an epidemiologist. Of course you cannot do this in humans, right, that’s not ethical. So, the only way to do this is in animal and because autistic is a social, behavioral/ cognitive condition, the closest animal model is in monkeys. This is p[particularly relevant when one need to focus on the immune system, which appear to be centrally implicated at least in some of today autism cases, because you need to be as closely related in MHC gene complex, the mouse or rat won’t do, though, it would be a suitable model for developmental gene candidate.

No matter what your view might be, it is likely that the increase is real, and I ma not going to argue this here because this debate is not going to be resolved amongst ourselves. But more importantly, it is likely that many factors are at play. To find them, one need to look at individuals, in detail, no statistics, with medical and biological tools. There is no way around this.

I have not met Rick Rollens, but my understanding is that it is his grand-son and not his son who is affected.

jonathan said...

Hi Rick Rollens has two sons, the youngest of his two sons his autistic. You may be confusing Rollens with Bob Wright who founded autism speaks who has a grandson who is autistic.

You may or may not be right about my factual inaccuracies about epidemiologists, but if the increase is real then they should be able to find something that was introduced into the environment starting in the mid 1980s and then increased greatly after that time in the 1990s to cause autism. So far nothing like this has been found. The vaccine hypothesis has failed miserably as I have noted. Also, they have to disprove the association with changes in special education legislation and myu arguments that diagnoses of autism follow the dollar sign. So far, as far as I know, no studies have been done refuting my hypothesis.

SM69 said...

I have now read the study from Picciotto and Delwiche.

This in my opinion is a very well thought out and thorough epidemiological study, that shows that in the last 16 years (since 1990), there has been an increase of 7-to 8-fold in the incidence of autism, that exclude Pervasive Development Disorder and Asperger. The issues of changes in diagnostic criteria, the inclusion of milder cases, an earlier age at diagnosis during this period was address and estimated to contribute to 2.2- 1.565 and 1.24 fold increase on autism, respectively.

The authors suggest an additional test to confirm this trend- it is to determine the incidence in 2-30 years olds using the adult equivalents of the diagnosis criteria used in children today. Good experiment I think.

The debate on the autism rate has been very controversial, but there are more and more evidences that the trend is real. Surely, what ever trend is, one must report any observation of change in a population, even if the causality are not yet conclusively demonstrated. I note that the authors do not discuss what causes could be related to this increase, this is a straight epidemiological work that strengthens the reality of the current trend in autism rate.

Some interesting series of facts reported in the paper: From 1990 to 2006, State of California funding for family services for personas with developmental disabilities (autism, cerebral palsy, epilepsy, mental retardation), rose from $72 to over $400 millions and total spending for individual, family and community services increased from $2.8 to $4.9 billions. In 1986, state legalization mandated preschool programs for the 3-to 5 years old with disability, reaching state-wide coverage by 1995. And in 1980s, services for persons with developmental disability became Medicaid reimbursable.

It seems that the state of California is going further than most, and certainly than the UK government to assist families of disabled children. Surely, an example to follow and to continue to promote and develop.

coc said...

I have not heard of such studies either Jonathan, but one thing to consider would be the global increase in autism diagnoses. The IDEA obviously only applies in the US, whereas the increased numbers of cases is common across the globe, even in countries where services are terrible. I wonder is it possible that the American media have driven an increase globally as a secondary effect of the US based growth which may have its roots in IDEA? It sounds like a difficult theory to prove to me.

jonathan said...

it is to determine the incidence in 2-30 years olds using the adult equivalents of the diagnosis criteria used in children today. Good experiment I think.

I agree that would be a good experiment. The problem is looking for all of the potential autistic adults out there is like looking for a needle in a haystack, as they don't present to regional centers or receive special education services which is the way most of the autistics are found in these studies.

I am hoping that there is some way to locate autistic adults and if the people like yourselves who believe the trend is due to a real increase, then you should be able to find lower prevalences in adults, but such a study i don't think has ever been done and probably won't be done for the reasons i stated.

SM69 said...

Hi-

I meant 20-30, not 2-30!!!

Yes I agree with your points, but adults with autism, to the exception perhaps of Asperger people (who also were excluded in that study) must be known to some services, there must be ways to track them, also, likely they are not employed, so again, it should be feasible to track them, though maybe the situation in the US is different.

I am working more on demonstrating what type of intervention is effective in children with autism, to which level and why and advocating for the cause of autism. I think this is more needed and beneficial, with direct outcomes to people with autism.

Right now, hoping to get a response to SBC in the Guardian after today’s report.