Commentary
Published: Nov 14, 2007
Crusades Versus Caution: Crossing The "Autistic Spectrum" Divide
by Thomas Sowell


Autism is a devastating condition, both for those who have it and for their parents. At this point, its causes are unknown and if there is any cure for it, that is unknown as well.

There are many ways of coping with tragedies. One of the less promising, and often dangerous, ways is to launch a crusade.

Crusades may be emotionally satisfying, politically popular and welcomed by the media. But crusaders are not known for caution, for weighing evidence or for counting the costs, which may extend well beyond the cost in money.

There have already been many casualties in the crusade against autism, and there may be far more if recent recommendations of the American Academy of Pediatrics are carried out to have every child tested for autism twice by age two.

Think about it: How many people are qualified to diagnose autism? Enough to test every child in America? Not bloody likely.

Professor Stephen Camarata of Vanderbilt University has tested and treated children with autism for more than 20 years.

"While it is relatively easy to identify a five year old as autistic," according to Professor Camarata, "it is much more difficult to reliably diagnose a preschooler or toddler."

The word "reliably" is crucial. Anybody can un-reliably diagnose autism, just as anybody can un-reliably predict the weather or the stock market.

The consequences of unreliable diagnoses of autism can be traumatic for parents and children alike.

As a result of organizing a group of parents of late-talking children back in 1993, I encountered many stories of emotional devastation that these parents went through because their children were diagnosed as autistic -- diagnoses which the passing years have shown to be false more often than not.

As a result of writing books about these parents and children  -- the most recent being "The Einstein Syndrome" -- I have heard from more than a hundred other parents with very similar stories.

Professor Camarata at Vanderbilt has a far larger group of parents of late-talking children, since he specializes in studying and treating speech disorders, and he has likewise found numerous cases of false diagnoses of autism among children who are late in beginning to talk.

More is involved than the needless emotional stresses of the parents. Many of the treatments inflicted on children diagnosed as autistic would be called child abuse if they were not done as "medical procedures," and they can set back or distort a child's development.

Once the "autistic" label has been put on a child, it can follow him and her into schools and beyond, causing that child to be treated differently by teachers, nurses and others.

Too many people refuse to reconsider any evidence contrary to the label, however blatant that evidence becomes or however much that evidence increases over the years.

The initial evidence on which a diagnosis of autism was based may be nothing more than a checklist of characteristics of autistic children, often administered by someone with nothing more to go on than that checklist.

The fundamental problem is that many items on such a checklist can apply to many children who are not autistic. A study of gifted children, for example, found many of them showing the kinds of characteristics found on checklists for autism.

According to Professor Camarata, "because there are no reliable biomedical markers for autism, diagnosis must rely on subjective rating scales making it difficult if not impossible to conduct accurate screening in toddlers or preschoolers."

But it is precisely the checklist approach that is being urged by those who are crusading for every child to be diagnosed for autism before age two.

Like most crusaders, they seem unwilling to consider the possibility of errors, much less the consequences of those errors.

The very definition of autism has been expanded in recent years to include what is called "the autism spectrum." What this means, among other things, is that there is now far more wiggle room for those whose diagnoses have proved to be wrong, who refuse to admit it, and who are now even more unaccountable than ever.

The recently launched crusade to have every child tested for autism before the age of two has as its reason an opportunity for "early intervention" to treat the condition.

Dr. Scott Myers, a pediatrician, has been quoted by Reuters news service as saying that autistic children who get earlier treatment "do better in the long run."

That may be true if the children are genuinely autistic. But the dangers of false diagnoses of toddlers and preschoolers have been pointed out by Professor Stephen Camarata of Vanderbilt University, who has tested and treated children with autism for more than 20 years and has encountered many cases of inaccurate diagnoses.

A prudent trade-off, as distinguished from a crusade, would weigh the dangers of false diagnoses against the benefits of "early intervention."

There is already considerable evidence of false diagnoses of preschool children as autistic, and the treatments inflicted on them can be abusive, with incalculable negative effects on their development.

What about the positive effects of "early intervention"?

According to Professor Camarata, those children "with true autism" are "very difficult to treat and may never say 'mommy' or learn to take care of themselves without Herculean efforts by their parents and teachers."

The limitations of what can be achieved with even early intervention mean that there can be real heartbreak, whether a toddler or preschooler is either falsely or correctly diagnosed as being autistic.

Much has been made of statistics showing a sharp increase in diagnoses of autism in recent years.

What has gotten much less attention is the changing definition of autism, which raises the question whether there has been an actual change in the real world or simply a change in the way words are used when collecting statistics.

People today are often spoken of as being "on the autistic spectrum" rather than as having autism.

While there are some conditions which are much like autism, there are other conditions, such as having a very high IQ or simply being late in talking, which often include characteristics listed on checklists for autism. These are open invitations to false diagnoses.

We would see the dangers immediately if people who wear glasses were included on "the blindness spectrum" or people with harmless moles were included on "the cancer spectrum."

Blindness, cancer and autism are all too serious -- indeed, catastrophic -- to use loose definitions that fudge the difference between accurate and inaccurate diagnoses.

Loose definitions of autism produce bigger and more newsworthy statistics, which in turn can attract more children into existing programs and attract more money from the government, foundations and other sources to support those programs.

Many parents have told me that they have been urged to let their children be labeled autistic, or on the autistic spectrum, in order to get money for speech therapy or other conditions from grants that are available to deal with autism.

Professor Camarata points out that the "less precise 'autism spectrum'" label "has had the unintended consequence of diluting resources, research and services to those children and families who most need the support" -- that is, families whose children suffer from genuine autism.

Loose definitions also promote the illusion of "cures" for autism, since most late-talking children who were never autistic in the first place "will be miraculously 'cured' because most late talkers who are otherwise unimpaired learn to talk with little or no treatment," according to Professor Camarata.

Parents whose children are late in talking or have other troubling problems would do well to seek diagnoses from the most highly qualified professionals they can find. But they should not rely on the facile checklists being promoted in the current crusade for universal diagnosis of infants and toddlers for autism, without facing the question whether or not there are enough people qualified to make such diagnoses.

Thomas Sowell is a senior fellow at the Hoover Institution, Stanford University

COPYRIGHT 2007 CREATORS SYNDICATE, INC.




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