Charlatans to the Rescue ("Autism's False Prophets")

[question everything]

Charlatans to the Rescue
By LINDA SEEBACH
Book Review, WSJ 9/23/08


Ever since psychiatrist Leo Kanner identified a neurological condition he called autism in 1943, parents whose children have been diagnosed with the most severe form of the illness -- usually in the toddler stage, before age 3 -- have found themselves desperately searching for some way not to lose their children to autism's closed-off world. Unfortunately, such parents have often found misguided doctors, ill-informed psychologists and outright charlatans eager to proffer help. Paul A. Offit, a pediatrician and the chief of infectious diseases at the Children's Hospital of Philadelphia, has gathered this sorry parade of self-styled samaritans for "Autism's False Prophets," an invaluable chronicle that relates some of the many ways in which the vulnerabilities of anxious parents have been exploited.

(snip)

For a disorder that has been noticed and described relatively recently, autism is quite common, affecting as many as one in 150 children. And the frequency of the diagnosis is increasing, according to the Centers for Disease Control and Prevention. The natural reaction to such an increase is: "Something must be causing it." The next step is: "Someone is to blame" -- followed by lawsuits, if only people can figure out whom to sue. Dr. Offit notes two likely causes of the increase in autism diagnoses. One is that the definition of the disorder has broadened over time, so that children with mild symptoms are now being diagnosed when once they would have been regarded as merely quirky. The second cause of the rise in autism diagnoses, according to Dr. Offit, is that in earlier times children with severe symptoms of what we now recognize as autism were more likely to be diagnosed, often incorrectly, as mentally retarded.

Just as autism is being found more often, so, it seems, are dubious explanations for the source of an illness that so far has defied medicine's attempts to find its origins. The parade of "false prophets" began lining up soon after the disorder was defined. At mid-century, psychoanalyst Bruno Bettelheim set up a school in Chicago, and published a book, based on his theory that autism was precipitated by the "black milk" of mothers who treated children with a frosty emotional distance. His claims of successful treatment were widely disseminated; that the claims were fraudulent, not so much. Next in Dr. Offit's parade are the advocates of "facilitated communication" from the 1970s and 1980s, who claimed that their approach enabled nonverbal children to express their true selves. Facilitated communication entailed having a "facilitator" support a child's hand or arm, helping the child type on a keyboard or use other devices. The method was easily debunked with a simple experiment: Don't allow the facilitator to see what the child is seeing and suddenly the child's communication skills evaporate. But facilitated communication flourished for years. Nobody thought to do the experiments until the children's true selves -- or at least their imaginative helpers -- began recounting false tales of sexual abuse.

In 1998, a British doctor named Andrew Wakefield joined the ranks of autism explainers, announcing in The Lancet that the disorder was caused by the triple vaccine for measles, mumps and rubella (MMR) given to young children. Only later did it emerge that the children he studied were clients of a lawyer who was searching for evidence he could use in a lawsuit. The disclosure prompted most of the co-authors of Dr. Wakefield's article to disavow it. The MMR episode seems like just a prelude to the American manifestation of the childhood-vaccines panic of recent years. As Dr. Offit reports, the autism bogeyman is now the use of thimerosal, a preservative in vaccines. Thimerosal, as many studies in several countries have shown, is safe; whatever may be causing the increase in autism diagnoses, thimerosal isn't it. But in an excess of caution, federal agencies pushed to have thimerosal removed from almost all childhood vaccines

(snip)

If thimerosal had been a cause of autism, the appearance of new cases should have begun to slow. In fact, autism diagnoses continued to climb. Of course, the evidence rejecting thimerosal as a cause of autism had no effect on true believers, whose ranks include distraught parents and those beating the drums for their own patented remedies. Dr. Offit wonders why parents who distrust scientists and public health officials for refusing to admit that vaccines cause autism -- after all, they don't -- "haven't been similarly skeptical of the vast array of autism therapies, all of which are claimed to work and all of which are based on theories that are ill-founded, poorly conceived, contradictory, or disproved." Good question.

Ms. Seebach is a writer in Northfield, Minn.

http://online.wsj.com/article/SB122212979072465559.html?mod=todays_us_opinion (subscription)

[KT2000]

1. It was not long ago that

parents were told that if their child showed improvements then they really did not have autism in the first place.
The first consideration is always liability as this article shows.

[sui generis]

2. the most annoying thing about the vaccine studies is this:

everyone is focused on thimerosal, and not any kind of intermediate immune response to the attenuated components. Hello, there's more than just thimerosal in them thar hills.

I thought these guys were scientists. How embarrassing. Even worse: CNN has published "it is" or "it isn't" studies every other two weeks on this, and now even Scientific American is joining the fray of self-contradiction.

What thuh eff? :shrug:

[MannyGoldstein]

3. Another Problem Is What Gets Called "Autism"

It used to be that autism was only applied to what is now considered severe autism. Over the past two decades a new umbrella condition has been claimed (though never scientifically validated), called "autism spectrum disorders". All kinds of things get lumped under that umbrella, including (according to a Harvard Med School developmental psychologist who I spoke with) most MIT professors. (By the way, lumping any disorder together without any experimental basis for doing so is stupid and dangerous.)

The ever-expanding definition of who is autistic causes an artificial increase in autism rates over time.

[KT2000]

4. That is no comfort

We still have to face the fact that one in 150 children are having to cope with brain dysfunction and no one is doing anything to stop it. What a wonderful world it will be when fully one in 150 adults are coping with brain dysfunction - and even more when age related dementia takes its toll.

The arguments about this are pointless. The lumped together conditions now under the autism spectrum disorder label reflect brain damage in children. They are not developing properly from the fetal stage into early childhood.
Most under this "umbrella" will never know a normal life. They will not be able to realize their full potential. They will never meet the expectations that others have of them. Their families will spend countless hours and dollars in efforts to make their children socially acceptable and possibly employable. Other family members will have to put their desires and needs after the needs of the child with brain dysfunction.

What kind of society allows this to happen? A society that places protection of corporations fearing liability before the health of its citizens.

[LeftishBrit]

5. It isn't that it's a comfort...

the point is that there is lots of evidence that the rate of autism has *not* increased much, and that many people who were diagnosed as 'mentally ill' or 'retarded' many years ago are now diagnosed as autistic. Also, very premature or sick newborn babies who would have died 30 years ago, now survive with an increased risk of autism.

This is not the same thing as saying that autism isn't serious. It's very serious. But I doubt that *this* condition is caused by anything that corporations are doing; though unregulated environmental pollution is certainly taking a big toll on people's health in general.

[KT2000]

7. The severe form of autism

used to be a very rare condition but it is no longer rare - worldwide. The rate discussion is just a distraction from the fact that we are not doing anything to stop the damage being done to children. One in 150 children with brain damage is not acceptable, period.

All chemicals currently in use have not been tested adequately - some not at all since they were grandfathered in. They have not been tested for developmental damage, immune damage, neurological damage or DNA damage. The testing is usually limited to death and possible cancer. Exposure limits are set for once in a lifetime exposure to a single chemical for a healthy white 35 year old male.
When current testing does show damage in the previously untested areas the studies sit idle because governments do not want to act upon them. Rarely is a known dangerous chemical taken off the market especially in the US. This is due to immense pressure from corporations.

For example, PCBs and dioxins are known to cause neurological damage to the developing fetus. It interferes with the thyroid which is essential to the proper formation of the brain. Learning disabilities are a known result of such exposures at critical times of development.

Another example: It was found that when two color additives in food were combined, a neurological poison was made. That means that if a child eats a meal that has the two offending color additives, he/she is being exposed to a neurological poison.

Another example: Children with autism spectrum disorders are known to have higher levels of chemicals in their blood and fat tissue. The detoxification processes that a healthy person has - have been found to be impaired in these children - their bodies are not converting the poisons they (like all of us) are exposed to so they can be expelled from the body. Some of these chemicals mimic hormones causing an array of problems.
Very young children do not even have mature detoxification systems that are capable of disposing of some chemicals.

Corporations are heavily involved in determining health policy. They spend millions to make sure that health studies and investigations do not focus on their products as being the cause. When their products are implicated, armies of corporate surrogates fight to discredit the studies and their authors. Institutions dependent upon corporate handouts, such as universities, medical journals and government regulators, make sure the offending studies do not make into regulatory consideration.

[LeftishBrit]

8. Probably not as rare as all that; but such children were simply called 'severely retarded'

However, I would agree with you that the effects of chemicals and other pollutants, especially prenatally, on children's health and development have been seriously under-researched. One reason why I get so frustrated at the focus on vaccines is precisely that I think it deflects attention from this important issue.

[chicagomd]

11. Your post

is almost all a complete mess of bullshit and unsubstantiated nonsense.

"For example, PCBs and dioxins are known to cause neurological damage to the developing fetus. It interferes with the thyroid which is essential to the proper formation of the brain. Learning disabilities are a known result of such exposures at critical times of development."
--This almost sounds plausible, do you have a reference for this?

"It was found that when two color additives in food were combined, a neurological poison was made."
--Scary, and total horse shit unless you can back it up. What two chemicals were these and at what exposure levels were they found to be poisonous? Hey, did you know that aliens make crop circles? Prove me wrong...

"Children with autism spectrum disorders are known to have higher levels of chemicals in their blood and fat tissue." --Incorrect.

"The detoxification processes that a healthy person has - have been found to be impaired in these children - their bodies are not converting the poisons they (like all of us) are exposed to so they can be expelled from the body." --Also incorrect.

"Very young children do not even have mature detoxification systems that are capable of disposing of some chemicals." --You keep using these words, I don't they mean what you think they mean. What "detoxification systems" are you talking about? The liver and kidneys are the main detox organs in the body, and they are immature in young infants. What chemicals are you talking about specifically?

I am not going to argue with you about testing, etc. But at least make an attempt to back up your statements with some reference.

Or are you just making shit up as you go?

[KT2000]

12. great attitude

and more than a bit of arrogance on your part.
I will refer you away from your corporate sponsored medical journals for an education that would be a great benefit for you.
*A good place to start are the studies published in Environmental Health Perspectives - free searchable archive (publication of the National Inst. of Environmental Health Sciences - NIH)
*I will also refer you to the foreign environmental journals, such as the Scandinavian countries.
*You may wish to read the work of Philip Landrigan, MD - Mt Sinai
*This is a terrific resource: http://www.iceh.org/cgi-bin/searchresources.cgi
* The Lowell Center for Sustainable Production, U of MA, Lowell has a good publication: Presumption of Safety: Limits of Federal Policies on Toxic Substances in Consumer Products

I am sorry but your education, as all md's education, in the environmental influences on health is lacking. What I wrote is correct but I will leave it to you to educate yourself about chemicals, health and birth defects, regulation, influence of corporations, and the failure to protect health. What you currently believe about this is a fairy tale - sorry but that is the truth.

I hope you do dive into this and learn as much as you can. I promise you will be a much better physician for your patients.

[cosmik debris]

13. Bullshit!

You made specific claims.

Back them up with specific citations.

(Of course I know you can't because your outlandish claims are not supported by facts.)

[Harold_Hill]

14. Brain Damaged like Einstein?

There is no proof Einstein was autistic, but he clearly had some of the symptoms. He didn't talk until he was 4. Even then he didn't talk very well until he was about 10. He was reported to have to repeat what someone had said in order to respond. That is classic echolalia. A common occurance in autism. (can't give you a link. It was in a bio of Einstein that I read a year or so ago.)

Not all of those 1 in 150 are "brain damaged." Most just have a different mindset. They are drawn to objective facts rather than subjective emotions.

I have a friend who didn't realize the Asperger's that runs in her family until one of her family members had TWO kids with autism. Then looking back, she saw two uncles, a great grandmother & maybe some nephews with clear symptoms of Aspergers. It was always common, just undiagnosed.

There does seem to be an increase in actual incedence rate, but not as much as the chicken-littles would have you believe.

[Warpy]

6. I worked at MIT and it is Asperger's central

although there were fewer of them than your Harvard med school psychologist would have you believe.

I liked the Asperger's people. I could ask them a single question about their field and be treated to a long explanation of what they were working on (the "little professor" phenomenon). It was a cheap education in cutting edge physics. Since they have no concept of picking up emotional cues from other people, I'd just tell them when the lecture was finished and we both needed to do something else. They were never offended and seemed a little grateful I wasn't as irritated as people who didn't know the syndrome often were with them.

Asperger's is very real. However, whether or not it's a high functioning autism is moot.

[MannyGoldstein]

9. Hey Warpy - Are You A Biomedical Engineer Or Similar?

If memory serves, you keep popping up on medical *and* technical posts. I'm a medical technology person - I design medical devices.

I do think that understanding Aspergers' relatedness to autism is very important. If we classify things together that are not related, then statistical analysis, finding treatments, and applying treatments becomes a mess. In fact, autism and Asperger's seem to be physiologically distinct on brain imaging.

[dropkickpa]

10. Hee, this is several of the people I work with daily

I get along great with them, though it does require a serious mental gear shifting for me because their social cues are not typical and they have trouble reading mine, too. I do think lumping them under the autism umbrella does them, and those who truly have autism, a grave disservice. It's as if ASD has become the great catch-all for every "We really don't have a fucking clue" disorder.

[silverweb]

15. I knew someone who called it a "choice."

I had a pair of roommates years ago who were involved in a group that they called "family." The leader of this group had a lovely large house in which she lived with her autistic teenaged daughter. All members of the group maintained their own homes and jobs, but spent 24-hour shifts, two at a time, in the leader's home, helping maintain it and looking after the autistic girl.

The leader taught that autism was a "choice" made by a traumatized soul from a previous lifetime. The soul feared the world because of past trauma and made a "choice" to not participate in this life.

Therefore, all members of this "family" spent their time doing "soul exercises" with the autistic girl, lavishing her with attention and affection, with the goal of getting her to leave fears behind and participate in this world.

I spent one evening with the group at my roommates' invitation for their Christmas party, observed the autistic girl and her mother closely throughout, and came to some conclusions of my own:

(1) That the girl was truly very withdrawn and in her own little world and, to my untrained eye, likely autistic; and that everyone in the "family" was devoted to her.

(2) That the mother was a brilliant manipulator. She had created a cult around her own mythology of autism; she owned the house, traveled, and built a career around her mythology -- and maintenance and child care were totally free thanks to her devotees.

I remember wishing I was a trained sociologist, because the dynamics of this group were absolutely fascinating. I moved not long after that and never saw any of them again, so I have no followup information, but it was a very interesting case.

[mizzuzmojorizin]

16. How about Jenny McCarthy's kid?

She took him off dairy and gluten (and probably other foods/additives) and has found success (and it was dramatic). She also noticed that right after his vaccines, the symptoms began. In other words, her son started out like other children and became withdrawn after his shots.

I believe there are multiple reasons for the increase in cases. And I also believe, with all my heart, parents who have made changes with their children and can vouch for their success.

[lizerdbits]

17. Correlation vs. causation

Please read up on it.

[mizzuzmojorizin]

18. I don't need to, thanks anyway. I trust her observations implicitly

You know, being a mother of this child and all...There were dramatic changes instantly. 'Nuff said for me.

[lizerdbits]

19. You are free to believe whatever you like

If you'd like to believe anecdotes instead of scientific research be my guest.

Maybe parents of autistic children should be conducting research instead of people with decades of training and experience.

[mizzuzmojorizin]

22. As well-educated as doctors may be...

they simply cannot know the nuances of a child's behavior the way a mother who can. And research only goes so far. Remember when doctors gave us that wonderful advice about eating margarine instead of butter? Now they denounce transfats (which the alternative community has always done) and know that saturated fats serve a purpose and are not completely beyond the pale.

[lizerdbits]

25. Wrong about one thing therefore wrong about all

Hopeless.

[mizzuzmojorizin]

30. There is only one thing hopeless to me

Those who would trust their very lives to people who make educated guesses and their so-called educated guesses are based upon fallacies.

[trotsky]

31. Like taking Aleve? n/t

[beam me up scottie]

32. This incarnation seems to get around better than the last two.

Clever girl.

[lizerdbits]

33. I agree

That's why I go to trained medical professionals for health advice.

[daisychains]

34. Be careful that your local hospital isn't bankrupt

Feast your eyes on this atrocity:


http://www.pcij.org/stories/1998/caesarian.html

[trotsky]

35. ZOMG!

A ten-year-old article about Caesarian Sections! Too bad you aren't still around to mock.

[beam me up scottie]

20. And Suzanne Somers' breast cancer was cured by mistletoe.

You're entitled to your own opinion, not your own facts.

[mizzuzmojorizin]

23. "Cured?" Don't know if I buy that, even though we are talking herbs

I am sure the mistletoe arrested the cancer, but I hope she has altered her diet somewhat. I have read one of her diet books and she believes (or did) in a low-carb diet, along with food-combining principles. I believe in the latter, but I always wondered about that low-carb crap and her recipes using animal products all the time. I simply believe that animal products don't contain the antioxidants necessary to combat free radicals and therefore prevent cancer. And so when she became ill, I thought of that.

[beam me up scottie]

28. I was being facetious.

"I am sure the mistletoe arrested the cancer"

Sometimes I wish willful ignorance was painful.

"I simply believe that animal products don't contain the antioxidants necessary to combat free radicals and therefore prevent cancer. And so when she became ill, I thought of that."

Really painful.

[varkam]

21. Actually, it kind of sounds like you need to.

But, that's just my take.

[mizzuzmojorizin]

24. Why would I "need" to? I don't have kids

But I plan to go off gluten shortly, just to see how I feel. I don't have Celiac's or Crohn's, but I do think that there may still be a sensitivity (brain fog, for instance) which may be cleared up by eliminating wheat and other gluten-containing foods.

[varkam]

27. Why would you need to read up on something you don't understand?

Because reading is generally how people learn things. Of course, that assumes you are actually interested in learning.

[trotsky]

26. Holy crap, you again?

Hold on, your next pizza will be ready soon.

[cosmik debris]

29. Isn't this amazing!

A poster who openly prefers ignorance to knowledge and argues FOR the benefits of ignorance--pretty amazing!