Wednesday, July 16, 2008

Will The Real Autistic Please Stand Up

I have just finished reading a very interesting article by Thomas Sowell, author of the Book The Einstein Syndrome. Dr. Sowell writes about late talking children. These children have this trait in common with autistic children at age 3, yet end up being able to talk and have none of the social or other problems in common with autism. The most famous example of this, of course was Albert Einstein.

Dr. Sowell states in his article that he believes many of the children diagnosed as autistic are in reality just late talkers and are not autistic. He also talks about autism and late talking child researcher Stephen Camarata at Vanderbilt University. Many of the parents of late talking children that Dr. Camarata comes into contact with have been told to get a diagnosis of autism for their children in order to be eligible for government services including speech therapy. Dr. Sowell speculates that this may be the possible reason for the huge increases in autism prevalence that are being reported. He also talks about research done by Ellen Winter of Boston College who finds among children who score very high on standardized IQ tests, huge obsessional interests and the desire to be alone and isolated. Interestingly, these are characteristics that have commonality with autism spectrum disorders, particularly asperger's syndrome.

Dr. Sowell correctly (at least in this blogger's humble opinion) states that the parents and these children need to be spared the trauma of these misdiagnoses. Much money will be spent on unnecessary treatments and the children may suffer needless emotional issues.

It seems to me that this very interesting article has many implications for many of the issues that have been bandied time and again in the autism community.

Sowell has written about Albert Einstein, the favorite role model of various neurodiversity afficianados, who, at least in some instances, want to make autism into some sort of romantic thing. Since Einstein followed many of the same patterns of the late talking children that Sowell writes about, this is one of the number of things to suggest he may not have been autistic after all. Therefore using Einstein as one of the arguments against trying to cure autism has no bearing. Also, the notion expressed by some neurodiversity adherents that autistics can do just fine when they are older loses its credibility because of this. These late talkers who are likely not really autistic will only end up being a gun with blanks when used as ammunition by the neurodiversity community for promoting their misguided agenda.

Dr. Winters research also may suggest that some persons who are diagnosed as having Asperger's symptom, may be engaging in just normal manifestiations that are a commonality in certain children without disabilities but merely have high IQs. It seems for this reason a diagnosis of Asperger's should be marked "fragile, handle with care". Perhaps many of these so-called aspies who often flock to neurodiversity are not really on the autism spectrum at all.

What about persons at the other end of the extreme from neurodiversity, for example those who advocate treatments such as chelation and/or ABA as the salvation of those with autism? What can these late talking misdiagnosed children mean for their misguided agenda? Thomas Insel who heads the NIMH has recently given the greenlight for a controlled study involving chelation of autistic children. Is there a logical reason to do a controlled study on chelation? Study after study has shown no association between mercury and autism. The studies which show an association may have certain problems, such as the Geier's use of the VAERS database to support their findings. In this database people have entered that their children became Wonder Woman or The Incredible Hulk from vaccines and it was accepted. The fact that Mark Geier seems to have conflicts of interest in that he has filed patents for Lupron as an autism treatments and I think a couple of other patents? The fact that in his correspondence to me he claimed the reason for increased prevalence of autism in California between birth years 1970 and 1990 in spite of the fact there was only one thimerosal containing vaccine was in part due to increasing uptake of the DTP vaccination. Yet Dr. Geier cannot explain the absence of a pertussis decrease which would have had to have been of a much huger magnitude than the corresponding autism increase. He also claimed the number of shots had increased from 3 to 5. Yet this man who claims he is an expert on vaccines should know that the fifth shot is a booster shot given at age 5, which would be inconsequential for a child getting autism. Also the results of the Palmer study, which tries to show a relationship between the percentage of kids with autism and how close they live to coal burning plants in Texas are questionable. Though I have not read the study, Michelle Dawson on her comment board claims that there were only four years of exposure to the coal plants that were studied, yet the numbers include children from ages 3 to 18. Also Palmer does not control for children moving into the districts and presumes they were all born in the school districts where the coal producing plants were. If there is any legitimate association between any other heavy metals and autism I am unaware of it. There does not seem to be any evidence for trying chelation. Yet, the demand by parents is so great for easy quick fix solutions for autism they are willing to try anything. Some of these parents claim that this has produced miraculous recoveries for their autistic children. Assuming that Dr. Sowell is correct is it possible that some of the children who underwent chelation were not autistic in the first place. Perhaps they were just late talkers. This would negate any success claimed from chelation, either for the study that Dr. Insel has given the thumbs up for, any study to be done in the future or any parent who follows this and other DAN protocol treatments who claims a "recovered" child. In at least some cases, it is quite possible their child was a late talker.

Of course, the solution touted is controlled studies. Ivar Lovaas' 1987 study is touted as scientific evidence for the efficacy of ABA because the control groups and the experimental groups were supposedly identical at intake. Yet, there were problems with this study. The experimental and control subjects were not randomly assigned and there are huge discrepancies between the two groups. There is a ratio of autistic males to autistic females of 4:1 that is consistently found on average in various studies. The ratio of boys to girls in the experimental group in Lovaas 1987 was about this. There was near parity between the two sexes in the control group. Most of the literature shows that girls are often more severely autistic than boys, particularly in the low functioning groups. This would seem to negate the credibility of Lovaas 1987. It was also revealed that one of the 19 controls in Lovaas' study had Rett syndrome, a very unique autism subtype that is found almost exclusively in girls, so this person would likely have had a poor prognosis regardless of what treatment was done. This girl was reported in another study that Lovaas published on the ineffectiveness of ABA in Rett's. There were two other girls in the Rett's study, one of whom lived inNorway. The other two girls were both identified as being in the Lovaas Young Autism project that was going on at UCLA at the time. They both underwent 10 hours a week of ABA, the same amount of ABA that was given to all 19 subjects in control group one of Lovaas' 1987 study. So, a very germane question is were there one or two girls with Rett syndrome in the Lovaas control group. If only one of the girls but not the other was in the control group, this opens up other questions. What other types of research was lovaas doing at the time. What other studies did he do where subjects were receiving ten hours a week of ABA and not 40 hours a week?
Also, the results of Lovaas' study were highly dependent on the use of physical aversives, such as hitting and electric shocks and food deprivation. The Hughes act of 1991 outlawed the use of aversives in the state of California where I live and where Lovaas did his research. This means that ABA without aversives is marketed dishonestly by special educators. It also means that the science of ABA is incompatible with U.S. special education law that offers ABA as post and parcel of a "free and appropriate" education for autistic children at least in California and other jurisdictions where aversives are banned.

Probably a good number of parents of autistic children report recoveries or at least fantastic results due to ABA therapies with their children. Is it possible that at least some of the positive outcomes of children who undergo this therapy is due to the fact that they are not really autistic but are late talkers?

If there is someway to control for this confounding variable that may result in reports of favorable prognoses for autistic children and the pie-in-the-sky claims of certain neurodiversity adherents it should be done. Dr. Sowell in the article claimed though he is an economist and not a psychiatrist, psychologist or chelationist said that because of this he could produce high rates of recovery for autism. These are indeed points to ponder.

What about people who really are autistic rather than late talkers. Is it possible for them to recover, at least partially? The answer would seem to be yes and yours truly would seem to be an example of that phenomenon.

In 1958 when I was three years old the intervention of choice was psychoanalysis. No one who preaches the Bettleheim gospel is taken seriously nowadays. Yet during the first year I underwent psychoanalysis in the late 1950's, I went from being a severely nonverbal autistic to being verbal, having normal intelligence and to a large extent recovering, though definitely not 100%. My psychoanalyst took full credit for my partial recovery claiming it was totally because of her treatment.

Hopefully late talkers and spontaneously recovering autistics will be taken into account before ABA, chelation and neurodiversity are taken seriously.


Anonymous said...

Speaking of the Geiers, you may want to check this out:

Its a journal article, apparently peer reviewed, with quite a bit of questionable material. Both the article and my response may be heavy on the chemistry, but I really suggest that you read it.

samcmmbrm said...

Very interesting insights on the austism treatment/cause debates. As a father of a son who is currently in a autism special ed class, I am curious about your thoughts on what do you think is the best philosophy for improving/curing autism. My son has not technically been diagnosed other than (Developmental Delay), but I could care less about labels, I solely want what is best for him. He is almost 4 and still walks on his tippy toes, flaps his arms when excited and will do certain stimming activities all day if you let him (walk peremiter, look at a fan, turn on/off lights etc.) He does speak now but, most is mimic'd speach. He is bright, his memory is excellent and most academics (once anyone can actually get his attention and focus) is very easy for him and he gets bored quickly.. Self-help is a little more of a challenge for him as his balance and fine motor skills are not that great.

Anyway, my wife and I have done a ton of research over the past yr+ and have quikcly realized that as much as we have done we are only a blip on an iceberg to how much is out there. My wife is one of the Mercury Militia (I love the name btw) and she even went on the "Green our Vaccines" march a couple months ago) I am more skeptical but do believe that certain environmental factors coupled with vaccines can be a cause.. but that is just guessing (in the end... mercury is not a healthy substance to put into our bodies.. regardless of the outcome of any studies). I just want billions of $$ research to go into finding what the gene/environmental issues are so this can be cured or at least proactively stopped before it happens, if at all possible.

So, when you say pro-cure.. what exactly do you mean, and where do you think researchers should look?

jonathan said...

Hi, Sam, I really don't think there are any therapies that are really effective for autistic children right now given the current state of the art. I really wish I had more to offer you in terms of suggestions I really don't. The best bets right now are to do research in genetics and to find brain tissue for postmortem autopsies in my opinion. These options will probably shed the best light on autism but unfortunately only in the long run.

MRI scanning may also provide promising leads at some time, but the technology is probably too limited right now to find real answers for a while but that might change.
Both of these approaches have problems, however. Autism is probably a wastebasket term for many types of different problems with many different causes, most of them probably having at least a genetic predisposition. Therefore, many different genes on many different chromosomes have been found in association with autism.

The problem with postmortem autopsies is that most autistics live out their lives and very few diagnosed are older than 70 or so if any. This makes this tissue hard to find.

Another possible option is animal models, specifically using rhesus monkeys, who under certain circumstances can be made to mimic autistic behaviors if you are familiar with the work of harry Harlow. Of course rhesus monkeys are more expensive than rats and other types of laboratory animals and all animal models are limited including rhesus monkeys since autism involves speech delays (and sometimes e.g. in my case perceptual motor impairments) which can't really be modeled in animals.

So, the problems are formidable but I suspect certain research will be done at some point in time which will help find some answers but there are no easy answers right now.

There is also stem cell research and research done by carl cotman involving sprouting and regeneration of brain tissue. Also research has been done trying to implant schwann cells in animals which are a type of nerve cell that has more regenerative power than neurons. Of course the problem with these ideas is that we still don't quite understand the brain etiology of autism.

The vaccine causes autism hypothesis has pretty overwhelming evidence against it in spite of what your wife thinks, but unfortunately one of its appeals is that it suggests to its adherents that easy answers are provided which don't exist.

I wish i had more positive things to say but i don't. i hope that answers your questions.