By SANDY KLEFFMAN
Tallahassee Democrat http://www.tdo.com/features/health/stories/0320/0320.health.autism.htm
Throughout much of the nation, medical experts are perplexed by a stunning increase in children diagnosed with autism.
The number of autistic children receiving services from regional centers in California skyrocketed 273 percent between 1987 and 1999. Other states report similar dramatic increases. And the numbers continue to climb.
The surge is distressing families, straining the budgets of school districts and social service agencies, and sending scientists scurrying for answers.
"It's alarming," says Ron Huff, a psychologist for the California Department of Developmental Services who wrote a state report on the issue. "It's something we cannot afford to ignore."
Autism is a severe developmental disorder that undermines a person's ability to connect with the world around him or her.
Autistic children look normal, but often have little or no speech, can't interact socially and have a rigid need for routine.
By age 2 or 3, they often are profoundly isolated. They may fail to make eye contact or respond to others. Sometimes, they engage in rituals such as arm-flapping or repeating words and phrases. They don't know how to play, but may be fascinated by parts of objects.
The disorder is best known to many Americans through Dustin Hoffman's character in the movie "Rain Man."
No one knows what causes autism, but scientists have changed their opinion dramatically since the term was coined 55 years ago.
At that time, psychologist Bruno Bettelheim blamed "refrigerator moms," arguing that the emotional coldness of parents was the cause.
But today, autism is widely viewed as a biological disorder.
"We are confident it is a disturbance of the brain, but we don't know what areas are disturbed and in what way," says David Amaral, research director of the MIND Institute at the University of California Davis.
What worries Huff and others about the soaring number of autistic children is that the rate of increase is escalating. In 1998, the number of autistic youths registered at regional centers statewide climbed 16 percent.
Last year, it shot up 19 percent. More than 1,940 new children entered the system, raising the total to 12,150.
Of course the biggest impact -- one that is impossible to measure -- lies in the emotional toll on families.
"As a parent and someone who lives through this 24 hours a day, the emotional strain, the heartache and despair that all of us parents have is overwhelming," says Rick Rollens, a resident of Granite Bay and the father of an autistic boy. "It's just a living nightmare."
Some experts dismiss the increase by arguing that autism has simply become the disorder du jour -- much like attention deficit disorder. They maintain that children who in the past would have been diagnosed as mentally retarded or having other disabilities are now labeled autistic.
Indeed, the definition of autism has expanded in recent years to include a wider array of behaviors. Pediatricians are also more familiar with the disorder and thus more willing to make a diagnosis.
And because autistic children are eligible for a potpourri of taxpayer-funded services, that may cause some parents and educators to push for the label to ensure a child receives all the treatment possible.
"We have to be really careful that people don't overreact," says Bennett Leventhal, professor of child and adolescent psychiatry at the University of Chicago. "I don't believe there's an increase in the real rate of the disorder."
But others disagree strongly and are calling for additional study. They fear something else is behind the increase. Among the explanations suggested are toxins, vaccines or some other environmental cause.
"Anyone who suggests that this increase isn't real only needs to get out of the ivory tower and go to where these children are," Rollens says.
"We are clearly, not only in California but throughout the world, in the midst of an autism epidemic. The commitment by the research community needs to be accelerated dramatically to get to the bottom of this."
Link to vaccine?
Rollens isn't alone in his concern that something else may be fueling the escalation in cases. Joining him are some of the people at the forefront of studying the disorder.
"My own view is that (better diagnosis) can't account for the whole increase," says Amaral of UC Davis' MIND Institute, which is spearheading a study on the issue.
Janina Nadaner, who works with families of autistic children, doubts that many parents are eager to leap on the autistic bandwagon.
"I have not yet met a single parent who would choose to go with the diagnosis of autism," says Nadaner, director of early childhood services for ACHIEVE in Palo Alto. "I can't tell you how many parents have been refusing to allow a school district to put this label on their child."
Last year, after the state study disclosed the huge increase, the California Legislature earmarked $1 million for the MIND Institute to attempt to unravel the mystery.
With several other states reporting similar increases, the National Institutes of Health also has embarked on a multimillion-dollar study.
Rollens is among a group of parents in the United States, London and elsewhere who believe they have zeroed in on the culprit. They suspect the measles-mumps-rubella vaccine, otherwise known as MMR. These parents say they watched helplessly as their once-healthy children developed severe stomach problems and slid into autism shortly after receiving the vaccine.
Rollens, the former secretary of the California Senate, says his now-9-year-old son, Russell, was a robust, healthy child until he began getting a series of vaccines at the age of 7 months.
Suddenly, Russell lost many of his skills, couldn't sleep, developed chronic gastrointestinal problems and "suffered pain exhibited by those harrowing days of endless crying."
"Russell was officially diagnosed with autism six months later," Rollens says.
In England, several hundred families with similar stories have expressed interest in suing vaccine manufacturers.
Any questions raised about the safety of vaccines is enough to send shivers up the spines of many health-care professionals. They fear that even without proof of a link between autism and vaccines, such speculation will cause parents to avoid having their children immunized -- and thus put them at risk of contracting any number of deadly diseases.
Statistics are questioned
More than 1 million children die of measles worldwide each year, notes Leventhal.
Yet despite such concerns, some researchers have joined parents in calling for additional research on the topic. Among them is Amaral.
"The vaccination itself may not cause autism," he says, "but it may cause a cascade of other changes in the child that may have an impact on the development of the brain."
While stressing that he is not necessarily endorsing the theory, Amaral describes it this way:
If the vaccine were to cause a gastrointestinal infection in some children, this could make it difficult for the child to process foods. That in turn could lead to the production of opiate-like peptides. If those peptides crossed into the bloodstream and got into the brain, that could limit the brain's ability to develop normally.
"I think this is a plausible hypothesis -- something that should be studied," he says. "My fear on the other side is that people are getting frightened and parents are going to avoid having their kids immunized."
It could be only a coincidence that some parents notice signs of autism shortly after their child receives a vaccination, notes Robert Byrd, Amaral's colleague at the MIND Institute and the person heading up the state study.
The age when children receive vaccinations also is the time when language and social skills start becoming evident, says Byrd, section chief of general pediatrics at UC Davis.
Other experts question the reliability of the state statistics that have generated so much concern.
Bryna Siegel, director of the pervasive developmental disorders clinic at the University of California San Francisco, calls the database "infamously unreliable."
The statistics are based on reports prepared by case managers at regional centers. Siegel says these case managers may mark a child as autistic before an official diagnosis to ensure the child is eligible to receive all possible services.
"Whether there is an increase in the disorder is something that has not been demonstrated," she says.
Here are some of the characteristics experts look for in diagnosing an individual with autism:
Difficulty making eye-to-eye contact.