Rare No More

And these days, researchers use reliable diagnostic tools to provide more accurate statistical counts of disease rates in a community, rather than basing their counts on reports of already known cases.

As a result, there are more people with a diagnosis of autism now than at any time in history.

And it's a better time than ever to be autistic.

More Awareness, Research

What was our school supposed to do in the early '90s with Isabel, who was just one of a few hundred kids in the whole state labeled with autism?

The key word here is "labeled," because there were certainly thousands of people in Maryland with autism at the time. So where were they? The answer is that many of the kids were in school; they just didn't have the label. That category had been introduced only in the 1991-92 academic year -- and then as an optional category.

A diagnostic label really does influence the way we view someone. If Isabel's condition had been diagnosed as schizophrenia, as might have happened in the 1950s and '60s, a psychologist might have recommended that she be sent to a mental institution or assigned her to a class or school for mentally disturbed children. If she had been diagnosed as mentally retarded, as so many autistic people were and still are, she would have been placed in classes for cognitively challenged kids.

Today, pediatricians, mental health-care practitioners, speech and occupational therapists and educators are providing therapy to children with autism at earlier ages than ever, and they are discovering how to use safe and effective medicines to ameliorate some of their symptoms.

Federal, state and local agencies have mobilized to manage the heavy public health burden of autism. Special-education programs are expanding; new money is pouring out of the National Institutes of Health into autism research; and donors are contributing millions of dollars to advocacy organizations, private schools and research foundations. Between 2003 and 2004, the number of grant applications to the National Alliance for Autism Research, which was then the leading private foundation for autism research, doubled.

The increased awareness, and the new, higher, more accurate rates, mean that a newly diagnosed child is no longer a mystery. And this is true no matter where you are -- in a suburb of Washington or in Seoul, Cape Town or New Delhi. Parents all over the world are beginning to break through the walls of stigma that had made them hide their children from public view. They are asking for the public assistance they deserve, and where it is absent they are demanding it.

Plenty of Progress

I trace the beginning of my knowledge about autism and Isabel's identity back to that beautiful spring day in 1994 when a short, slightly overweight, affable child psychiatrist at Johns Hopkins told my wife and me that "Isabel has enough features of autism to be called PDD-NOS, Pervasive Developmental Disorder Not Otherwise Specified. It means that she's not severely autistic." By that time we had already been worried about Isabel for more than six months. The discussion of her diagnosis was really just having someone we could trust tell us what we knew all along, even if we hadn't admitted it to ourselves.

Isabel was our first child, and so we didn't really have a standard for comparison. In her first two years, she had seemed like any other child, and at 12 months she had begun to make some of the sounds that seemed like the beginnings of words. We thought she was fine. But when I look at our home movies today, I see that she never tried to communicate with us; in none of the videos of Isabel between 18 and 24 months does she say a single word. At 25 months old, she made only fleeting eye contact.

She began flapping her hands and arms occasionally and didn't respond to her name consistently. She spoke little and couldn't even tell us if she was hungry. We were at a point where we demanded clarity from doctors. A valid diagnosis of what was wrong with Isabel was more satisfying than devastating. It gave us a framework for understanding Isabel and a road map for the future.

Today, my teenage daughter is mainstreamed into a high school classroom for part of the day. Numerous tests have shown that she has above-average intelligence. She plays cello in the school orchestra.

Just last week, I showed her two magazine articles about my new book on autism, in which I talk about how far she has come -- farther than my wife and I, or our doctors, ever expected. "What do these articles say?" I asked. "They say I'm doing great," Isabel replied. Indeed, she is. ·

Roy Richard Grinker, a professor of anthropology at George Washington University, is the author of "Unstrange Minds: Remapping the World of Autism" (Basic), from which this article is excerpted. Comments:health@washpost.com.