"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