The autism delemma

Posted: Oct 03, 2001 12:00 AM

BACK on September 28, 1993, a group of parents of late-talking children was formed for mutual support, with my help, and grew until there were 55 families, scattered from coast to coast. Some of their children were diagnosed as autistic, though most of these diagnoses would prove over the years to be false.

Eight years later, almost to the day, the 9th Circuit Court of Appeals issued a decision on September 25, 2001 about a little girl in Nevada named Amanda, who had been diagnosed as autistic. That case illustrates the uncertainties and dilemmas involved in the diagnosis and treatment of children as autistic.

The legal issue was whether Amanda's parents had been given copies of the evaluations that declared her autistic. By law, the parents have a right to "examine all relevant records," according to the Court of Appeals. A much bigger and more profound practical problem is the combination of the uncertainties of knowledge about autism and the excessive certainty of the laws and of too many "experts" on the subject.

A psychologist who evaluated Amanda with the help of an "Autism Behavior Checklist" found the results to be "mixed." But a speech pathologist involved in the same evaluation, but using a different checklist, declared Amanda to be "severely autistic." Later a physician "confirmed the diagnosis of autism," according to the court, but then another organization that examined her "did not diagnose Amanda as autistic" -- and yet another organization reached the opposite conclusion.

In short, there is no definitive word to this very moment as to whether Amanda is or is not autistic. This is not uncommon. Many parents report conflicting diagnoses as regards autism. As the 9th Circuit decision says: "No single behavior is characteristic of autism and no single known cause is responsible. Perhaps most distressingly, currently there is no cure."

There are lists of things that autistic children do, but many other children who are not autistic do those same things. Amanda, for example, liked to spin herself, as autistic children do -- but so have many other children, including yours truly as a child.

Against this background of troubling uncertainties, there are nevertheless dogmatic certainties proclaimed by various zealots, bureaucrats and movements. One claim is that accurate diagnoses of autism can be made as early as age 2 by "professionals experienced in the diagnostic assessment of young children."

But what percentage of the people who actually diagnose children fall into that exemplary category, and how many inaccurate diagnoses are also made at that age -- or at any other age? Such crucial questions are seldom asked, much less answered. Nor has there been much attention paid to the bad consequences of wrong diagnoses. Numerous parents have been devastated by diagnoses that turned out to be wrong, and their children's education, self-confidence and social development have suffered as well.

It is also dogma that "early intervention" can only help. Yet Amanda improved after being removed from an early intervention program. So did a little boy in Nebraska who was diagnosed as autistic, but who was removed from an early intervention program after a legal challenge was made. He began to improve greatly, after having retrogressed while in the program. Other parents have reported similar experiences.

Uncertainties can be painful, but bogus certainties can be worse. Despite the difficulties of diagnosing autism, some people are supposed to have cured it. Obviously, nothing is easier than to cure a child of something he never had. Children grow out of many problems, including late talking, spinning themselves, and other behaviors common among autistic children -- and found among other children as well.

Obviously, whatever can be done to help genuinely autistic children should be done. Indeed, concentrating resources on those who are in fact autistic makes more sense than spreading the label and the money to many others. More important than the financial costs are the human costs of pulling children into the autism dragnet who are in fact not autistic.

Not only in my group, but elsewhere, there are children once diagnosed as autistic whom no one would call autistic today. This is not a reason for complacency, but for multiple diagnoses by highly qualified professionals -- and for skepticism toward know-it-alls in an area where science still does not know nearly enough.