Thursday, April 06, 2006

"Epidemic Denial" vs Autism Acceptance

With the publication in this month's Pediatrics of yet another repudiation of the "autism epidemic", the thimerosal-causes-autism and autism-epidemic groups have gone into yet another collective temper tantrum. And, as usual, their attacks are directed at the author rather than the data. Predictable.

The author, Paul Shattuck (not to be confused with Paul Shattock), seems genuinely suprised by the firestorm around him, especially since he had spent a lot of time and effort working with the Autism Society of America. It must hurt to have those same people turn on him so readily, but I can't say I'm surprised - I've seen it happen too often.

I won't spend the time to dismantle the feeble arguments raised against Dr. Shattuck's work (for that, see Orac and Kevin Leitch). What I would like to do is examine why these groups are so bitterly angry at Dr. Shattuck and others of his ilk who dare to expose the truth behind their lies (excuse me - "misrepresentations").

Denial - so the psychologists say - is not just a river in Egypt, it is a pervasive feature of human existence. A certain amount of denial is normal - I am in a certain amount of denial about getting well into my forties, although it hasn't reached the point where I have altered the birthdate on my driver's license. Denial helps us to minimize the unpleasantness of daily life by covering over the rough parts.

In some ways, you can look at denial as a mental version of spackle (a plaster-like paste used to fill in cracks and holes in walls) - it covers the imperfections of life without actually fixing them. As with spackle, the cracks and holes remain and can spread or reappear, but aren't visible anymore. A relatively small amount of spackle is essentially for good-looking walls, and a relatively small amount of denial is probably also neccesary for a smooth-running life. However, when either spackle or denial are used to excess instead of taking corrective action (e.g. instead of repairing a large crack or dealing with a major life problem), then problems occur.

For major traumatic events - such as finding out that your child has an incurable disability - a short period of denial allows a person to function until they have a chance to assimilate the new information at their own pace. However, this cannot be a permanent solution - or can it?

One way to make denial a permanent solution is to form a support group. Now, well-run support groups are supposed to help people to accept reality, but a growing number of (largely un-managed) support groups - often called "advocacy groups" - seem to exist solely to provide a social network where denial of reality is the accepted norm. Let's examine a few of these in the context of autism:


The "Autism-is-Curable" Groups:

Reality: As far as is currently known, autism is a permanent condition with an extremely variable prognosis. The eventual functional ability of a child with autism cannot be reliably predicted from their initial presentation, although the more severely affected children usually are more severely affected as adults.

Group Fantasy: Autism is curable, but only if the parents commit themselves body and soul to the cure. This includes following advice given by group "leaders", no matter how outlandish and never questioning someone who has "cured" (or "greatly improved") their child. Improvement is seen as the only "proof" needed that "cures" exist.

The fantasy ignores the fact that autistic children always make progress - autism is a syndrome of developmental delay, not developmental stasis. As a result, all children in the group will improve to some extent and some children will improve markedly - regardless of the interventions used. By enshrining these "placebo responders" (in reality, children who were going to improve regardless of the "treatment" used or not used), the group perpetuates the myth and stimulates the other parents to try all the harder in order that their children might be "cured", too.


The "Autism-is-Not-My-Fault" Groups:

Reality: Autism isn't caused by parents - except to the extent that the parents' genetics are involved. Likewise, the overwhelming majority of the data indicates that autism isn't anybody else's fault, either.

Group Fantasy: Autism is caused by the actions or inactions of other people, primarily governmental agencies, doctors, and - of course - that favorite Evil Empire, "Bog Pharma". Parents are only at fault if they fail to do absolutely everything they can do to "cure their children (see above). "Absolutely everything they can do" being determined, of course, by the group leaders.

These groups are the most puzzling, since one of their members, Dr. Bernard Rimland, was instrumental in showing that autism is not the result of "bad parenting". At least these groups aren't saying that autism is caused by a lack of parental warmth and affection. No, this time autism is caused by evil, corrupt and biased governmental agencies that refuse to admit that vaccines (either the MMR or the thimerosal preservative - take your pick) cause autism. The parents are only at fault if they don't try any and all of the proposed "therapies" to rid their children of mercury, poor sulfation, high testosterone, low anti-oxidant levels, hyper- or hypo-active immune systems (or both?) or whatever is current this week.

Many of the people active in these groups are more than willing to assert that parents who fail to enthusiastically embrace their therapeutic insanity are guilty of nothing less than child abuse, not to mention being criminally stupid. And that's just what they're saying in public forums.



So, it's not the parents' fault that their children are autistic - which is a tremendous improvement over Bettleheim and Kanner - but it is their fault if the children stay autistic. "Have you tried chelation? HBOT? Lupron? Injectible gold? If not, you're not trying hard enough!"

I guess that, in the eyes of the "Autism is curable!" and "It's not my fault!" groups, parents aren't "trying hard enough" unless and until their children are either "cured" or dead. And with the increasing lethality of the recommended "therapies" for autism, the latter seems to be getting more and more likely.

So why do parents buy these lines of baloney? Well, one possible reason is that it serves as a distraction. By focusing on how hard they are trying to get their children "well" and how mad they are at the heartless and corrupt government agencies that "poisoned" their children, they can forget - at least for a while - about how these children have not met the parents' expectations.

It may not be "nice" or "gentle", but the hard, cold reality is this: parents of autistic children did not get the child they expected (i.e. a child who was "normal"). This is not the parents' fault, nor is it the fault of the child or - truth be told - the fault of the government, doctors or even "Big Pharma". It just happened.

On the other hand, there is little to be gained - by the parents or their children - from not "dealing with" reality. No matter what fantasies the parents may be encouraged to believe, nothing will change the fact that they have the children that they have. This was a hard lesson to learn about my own child, but it is a lesson that I had to learn. To do otherwise would be to live in a fantasy world.

Acceptance is a simple thing - simple, but often very, very hard to do. Accepting the reality of the world doesn't mean that you have to like it, just that you acknowledge that it is reality. It is hoped that acceptance will lead to a more peaceful coexistence with reality, but that is not a requirement.

So, as long as the members of these so-called "advocacy groups" band together to ignore reality, they will be condemned to go through life being angry, frustrated and exhausted about something they didn't cause and have no power to change. But that's exactly what groups like DAN! and SafeMinds want, because angry, frustrated and exhausted people give them a political clout they would not otherwise have. Imagine how hard it would be for SafeMinds to get a member of Congress to introduce an idiotic bill if they didn't have a number of angry voters (in denial) behind them.

In the end, it's the parents (and their children) who lose in this game.


Prometheus

21 Comments:

Blogger Flea said...

Nice post, Prometheus,

The link to Maloney's site didn't work.

Not a bad crack at psychology either! I like seeing you mix it up!

best,

Flea

07 April, 2006 02:30  
Blogger Bronze Dog said...

Wonderful post. Think I use a few quotes next time Fore Sam comes out from under his bridge... or someone clicks on his .exe icon. I've been growing ever more convinced he's a bot.

07 April, 2006 05:52  
Blogger Kev said...

Working link for Maloney.

07 April, 2006 06:25  
Blogger Prometheus said...

Thanks, Kev. I must have typed in some extraneous characters when I entered the link. I've got it fixed now.

Bronze Dog, I can hardly wait until Fore Sam stops by. It should be very interesting to see his (its?) take on this. BTW, do you think he's an executable file or just a batch file run by GR?


Prometheus

07 April, 2006 09:09  
Blogger Do'C said...

Prometheus,

That distinction between delay and stasis, is so damn important, and one that likely most of the parents who buy into the quackery have totally lost sight of.

Post Hoc fallacy has a deathgrip on the masses.

Great Post.

07 April, 2006 09:30  
Blogger Bronze Dog said...

BTW, do you think he's an executable file or just a batch file run by GR?

Since I know little about bots, I couldn't say.

07 April, 2006 09:54  
Blogger Joseph said...

Excellent post. It's strange when the mercury parents use the word denial to qualify others. JBJr. likes to claim others are in denial - then again, there are funnier things he's said.

07 April, 2006 11:28  
Blogger María Luján said...

Hi Prometheus
Ok, I will try once more time, although perhaps you are not interested.
For many of us, the view of autism has developed from the horror that was told to us for doctors doing diagnosis to a totally different view of what is because of personal interest.
For many of us, acceptance of different genetics and different abilities is real. For many of us total love and support is the true way to communicate with our unique autistic children.
For me, simply your words do not represent me nor my mind nor my feelings about my son or my way of communicating with people thinking different (parents researchers or teachers).
Are you interested to know about other view?
If not, sorry by the disturbance
María Luján

07 April, 2006 11:58  
Blogger Joseph said...

BTW, do you think he's an executable file or just a batch file run by GR?

I think he's a cron job running a badly written random phrase generator.

07 April, 2006 12:05  
Blogger Prometheus said...

To María Luján,

If my descriptions of autistic parents caught up in the "advocacy group" madness do not apply to you, then I am very happy for you.

In reality, it is a minority of parents with disabled children - including those with autistic children - who end up trapped in anger and denial. And it is only when that minority thinks that they can speak for the majority that I have an "issue" with them.

By presuming to speak for "the autism community", these "advocacy groups" are usurping the voice of the parents who do not agree with them. They do this in the expectation that most people will simply shrug their shoulders and go on with their lives, leaving the "advocacy groups" free to imply that they have the majority of parents behind them.

I want to make it very clear that I do not intend for these descriptions to be applies to all parents of autistic children - quite the opposite! It is - fortunately - only a minority of parents who get "stuck" in denial and anger. Unfortunately, they are often a very vocal and belligerent minority.


Prometheus

07 April, 2006 13:42  
Blogger María Luján said...

Prometheus
Thank you for you answer.
I feel that what you are talking about are extremes, and every parent has a voice, different, because is related to his/her personal experience with autism.
BUT, being honest with you, as you know I have found a lot of comorbilities in my son and I have a lot of concerns about environmental insult, vaccines and chemicals impact in genetically susceptible children. The problem for me is when a grain of serious science is misused to support personal beliefs and/or not proven ( or potentially dangerous) treatments. BUT this is different to talk about concomitant medical problems in our children and this is also different to define autism with this concomitant medical problems that can (or can not we do not know for sure) be related to the core of the gene expression/epigenetics in Autism.
I respect the concept of neurodiversity and also have been much involved in research of comorbilities in autism because of personal experience. I think that is different to propose in an individual basis a role in the overall presentation of ASD for Hg-and metals in general- that to say that autism is Hg poisoning.

María Luján

07 April, 2006 14:55  
Blogger notmercury said...

I'm pretty good with a spackle knife but it takes a lot of drywall mud to cover up a leaky pipe in the wall. Eventually you realize the sheetrock is crumbling underneath it all.

Thanks for your thoughts on denial. Been there....done that.

07 April, 2006 17:35  
Blogger Julie said...

Bernie Rimland really puzzles me. I first heard him speak at a conference about ten years ago, when I was still in denial about my daughter's autism. He talked about his son, and how obvious it was that Mark was affected from birth. That was the basis of his argument that parents couldn't be at fault for their child's autism. The child was simply born that way. So how is it they were born that way if they've all been murcury poisoned?
Ironically, I thought at the time that my child was different because she wasn't born that way. Something must have happened to her! At that time a lot of people were on the regressive-autism-is-really-Landua-Kleffner-Syndrome wagon. Remember that one? Seizures in the language portion of the brain, and a little Depakote was supposed to cure them. For a little while, we really believed my daughter was getting some of her language skills back. Will Rogers said: The test of a first-rate intelligence is the ability to hold two opposing ideas in mind at the same time and still retain the ability to function. I guess Bernie Rimland is genius.

08 April, 2006 05:32  
Blogger Prometheus said...

Julie,

With all due respect to Will Rogers, I have also heard it said that the ability to believe in two contradictory things is a sign of insanity. Perhaps Will Rogers is referring to people who can consider two opposing ideas, or maybe he was just being funny.

At some point in the near future, I plan to post a "Hall of Shame" article in which Dr. Rimland will, sad to say, hold a prominent position.

His 1964 book, Infantile Autism was a major force in reversing the pseudo-science of Kanner and Bettleheim, but his recent work has played straight into the hands of those who would exploit autistic children and their parents for "fortune and glory". An acquaintance who is active in the DAN! movement (one of the many reasons I use a pseudonym) has privately commented that - even in the DAN! movement - Dr. Rimland has become more of a hindrance than a help.


Prometheus

09 April, 2006 10:48  
Blogger bcpmoon said...

Nice post.
BTW, is there a reference to read up on "the pseudo-science of Kanner and Bettleheim"?
Thanks in advance!

13 April, 2006 14:12  
Blogger Prometheus said...

Bcpmoon,

The best things to read are the articles in which Kanner and Bettelheim describe autism as being caused by a "lack of maternal warmth" (Bruno Bettelheim was particularly vehement in his denunciation of the parents of autistic children). Even Kanner's initial article on autism reveals his presumption that autism is due to some inadequacy or abnormality in parental behavior.

All of this was promoted regardless of the fact that the families with autistic children usually had one or more typically developing children. In other words, Kanner and Bettelheim were so sure of their hypothesis that they ignored the evidence before them.

A good place to find these articles (and much more, besides) is on Kathleen Seidel's website, neurodiversity.com. The website library is located at:

http://www.neurodiversity.com/library_index.html

For more on Bruno Bettelheim, see:

http://peace.saumag.edu/faculty/kardas/courses/AHG/Bettelheim.html

Also see:

http://www.cwru.edu/affil/sce/Texts_2005/Autism%20and%20Representation%20Jodlowski.htm

Happy reading!

Prometheus.

14 April, 2006 09:26  
Blogger bcpmoon said...

Thanks for the links!
I can understand the hypothesis of Bettelheim was easily accepted: A lot of people do not seem to like the idea that sometimes noone is to blame. And if the mother of the autistic child can be blamed, even better, because then you don't have to help her. Its the easiest way out for everyone else. But a terrible catch22 for the mother and her child.

To quote a poem I once learned:

"Wer half mir wider der Titanen Übermut
Wer rettete vom Tode mich, von Sklaverei?
Hast du's nicht alles selbst vollendet
Heilig glühend Herz
Und glühtest jung und gut
Betrogen, Rettungsdank
Dem Schlafenden dadroben"

Thanks again.

15 April, 2006 15:35  
Blogger Impatient Patient said...

God- these people sound like insurance company pain clinic people- It isn't your fault that you have inoperable scar tissue, but if you don't do EVERYTHING in your power to help yourself by denying that it is going to be there forever ...... well it is your fault then. WTF??????

So- you do therapy, relaxation, pool therapy, acupuncture, TENS, rounds of stupid drugs with bad side effects, exercise, laughter therapy, yada yada yada.... and it still hurts so they say too bad you didn't try hard enough. No mention of the INOPERABLE part. Ummmmmmmmmmmmmmmm............

16 April, 2006 01:03  
Anonymous Patricia Mathews said...

You'll love Barbara D'Amato's murder mystery "Death of a Thousand Cuts," in which a very thinly disguised Bruno Bettelheim is the murder viction and the consensus of all concerned is "he richly deserved it."

16 April, 2006 15:22  
Blogger Prup (aka Jim Benton) said...

Maloney is not an idiot, from my knowledge of her. I am sure that she has been given the information she has, and is not necessarily scientifically sophisticated enough to understand the errors in it. I am also sure she is trying to do something to help an admittedly difficult and painful situation.

What i wonder is if anyone of you have seriously attempted to contact her -- starting from the premise I stated above -- and attempting simply to convince her that the information she has received is faulty -- WITHOUT phrasing it in such a way as to make her feel guilty or stupid for attempting a well-meaning but misguided act.

I'd be tempted to start a letter to her in this manner:

"Dear Congresswoman Maloney:
I have read of your bill attempting to have a study conducted of the relationship between mercury and autism. I believe, if you research the topic further, you will find that this subject has been studied in detail, and that there is literally no scientific evidence for such a connection, and substantial reason to believe that no such connection exists.

In an ideal world, with unlimited resopurces, of course there could be no objection to further study of any theory, but in the current time, particularly with governmental support for science being cut by the Bush Administration, I think, on further reflection, you would find better use for even the small amount of money this study would require.

I am aware that there are publicists -- most of whom are neither scientists nor physicians -- and honest, concerned parents who would suggest the opposite. However, I believe you will find the few people with scientific training who do support this are of dubious reputation, such as the Geiers, and that one of the main articles that they use to support this was published in the JOURNAL OF AMERICAN PHYSICIANS AND SURGEONS. (Despite its prestigious name, a look at the contents of recent issues shows that it has run articles claiming that homosexuality is a disease, that 'shaken-baby syndrome' is a myth, and articles against abortion, government supported health care, and illegal aliens.)

Since this topic has been widely discussed in the 'blogosphere' I have included with this print-outs of several articles discussing this, complete with the comments on them. (If you read the comments carefully, you will be able to compare the logical -- if sometimes angry -- responses of the opponents of the mercury-autism link with the repetitious and frequently hysterical ones from the supporters.)

I am hoping this will lead you to further research the situation, and having done so, that you would withdraw your support for such a study. Ideally, you would do so publicly, in a speech during 'Morning Hour', a copy of which could be sent to those parents who, out of sincere worry for their children, have urged you to support such a study and whose honest concern has led them to seek useless, expensive, and ever more dangerous forms of therapy.

Yours.

------

I could send this letter myself, but I believe it would come better from someone who either has more scientific background than I have or who is themselves a parent.

12 May, 2006 14:18  
Anonymous christian said...

This is very strange..I am actually studying architecture and in my final year - We are looking at developing at tandem - a 'theme' and a 'mechanism'. I chose the brain as the theme and my mechanism, filtering. I started studying freudian filters and then suddenly this week we were asked to analyse these with white plaster. I was a bit stuck so i googled denial and plaster and look where it got me. So if anyone has anymore ideas about the relationship between plaster and denial or anymore definitive points I would love to hear them. Also..any ideas on how you would use plaster to explore the idea of denial as a brain filter?? Just another random thought for the day.

17 August, 2006 02:29  

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