The Autism 'Spectrum'

Posted: Sep 15, 2003 12:00 AM

When Billy's mother sees her 12-year-old son's popularity with team mates on his baseball team, she thinks back to predictions made when he was a pre-schooler that he would have so much trouble making friends that, among other things, he would probably never be able to get married and have children.

It is a little early for Billy to be getting married, but the predictions have been off by miles so far. Why were such dire predictions made in the first place?

Billy was late in beginning to talk and was supposed to have been autistic. Once that label had been put on him, nothing could change the minds of those who saw him that way.

Contrary evidence from his emotional attachment to a little girl in his pre-school was dismissed, even though the two of them were inseparable on the playground -- and even though an inability to form emotional attachments is at the heart of autism.

There is another kind of dogmatism from people who are not going to give up on the "autism" label. That is redefining the word to include a wide range of children who are said to be on the autism "spectrum." Billy's mother raised a fundamental question that seems to have eluded many professionals: Would you say that someone who is near-sighted is on the "blindness spectrum"?

What would we gain by such manipulations of words? And what would we lose?

Blindness, like autism, is a major tragedy. When some little toddler doesn't see quite as well as other kids, and may need glasses, what would be the point of alarming his parents by saying that he is on the blindness spectrum?

In the decade that has passed since I organized a support group of parents of late-talking children in September 1993, I have heard from literally hundreds of parents of such children, many of them re-living the anguish they went through when their children were diagnosed as autistic.

With the passage of time, it has become obvious that many of these children are not autistic, any more than Billy is autistic. Parents who are grateful that the hasty diagnoses their children received were wrong are also bitter that such labels were applied so irresponsibly -- often by people who never set foot in a medical school or received any comparable training that would qualify them to diagnose autism. But professionals have been wrong as well.

Instead of trying to reduce mistaken diagnoses that inflict needless trauma on parents and often direct children into programs for autistic children that are counterproductive for children who are not autistic, the expansive new concept of an "autism spectrum" provides wiggle room for those who were wrong, so that they can avoid having to admit that they were wrong -- and avoid having to stop being wrong.

It is as if people who told you that your little toddler would need a seeing-eye dog are able to get off the hook when the passage of time proved them wrong by saying that, because he now wears glasses, he is still on the blindness spectrum.

There is another aspect of this that affects the public in general and the taxpayers in particular. Time and again over the past decade, parents have told me that they have been urged to allow their late-talking children to be labeled "autistic" so that they would be eligible to get government money that can be used for speech therapy or whatever else the child might need.

Against that background, consider the widely publicized statistics showing an unbelievable rate of increase in autism in recent years. Is this a real change in the same thing or a redefinition of words? Worse yet, is this the corrupting effect of government money intended for children who are genuinely autistic?

Apparently no one knows the answer. But what is very disturbing is that such questions are not even on the agenda.

Studies of highly intelligent children show them to have many of the characteristics that can get them labeled autistic if they happen to be late in beginning to speak. For example, the book "Gifted Children" by Ellen Winner shows that such children "often play alone and enjoy solitude," have "almost obsessive interests" and "prodigious memories."

Such characteristics are an open invitation to false diagnoses of autism by those who are on the irresponsibility spectrum.