He looks like a normal 12-year-old boy at first glance. But a mystery rages behind Felix Salaiz’ brown eyes. For the first two years of his life, Felix grew up as most children do. He’d laugh. He’d seek his parents out. His eyes glimmered with curiosity. But then, at around 2 years old, he started to lose it. Felix regressed.

His mother, Marcela Salaiz, recalls the changes. She said it was as if Felix had descended into his own private world—one nearly inaccessible from this side of the divide. “His eyes became like, dead,” says Marcela Salaiz, pointing to a photograph of Felix taken when he was 2 and a half years old that hangs in their Salinas home.

Salaiz didn’t know it at the time, but Felix was showing the classic symptoms of autism, a fast-growing behavioral disorder that is now more common than childhood cancer and just as common as juvenile diabetes. Felix is now nearing puberty. But he still can’t laugh or relate to his environment in any sensible way. He still wears diapers. He still bites people—including his mother—if he’s in a bad mood. She has the scars on her arms to prove it. And Felix still can’t speak.

“He’s never said, ‘Mom,’” Salaiz says matter-of-factly.

On a recent Thursday evening she’s standing beside Felix, a thin, dark-haired boy who’s lying on his bed playing with his favorite toys: a tin bucket, pencils and a newspaper.

Felix occasionally glances up at his mother, but reveals no hint of grasping the meaning of her words. Instead, he’s immersed in his play, which consists of holding the bucket close to his face and tapping it lightly with a pencil.

“He likes the sound of metal,” is the best explanation Salaiz can offer up for his behavior. “This is what he does every night.”

When he tires of the bucket, Felix grabs the pencils and lets them slip from his hand—one by one—onto the bed. Or he tears a slice of the newspaper, blows at it softly for a few minutes, and then crumples it and places it in a neat pile next to him. He does these things for hours on end.

Felix suffers from an acute form of autism, a neurological disorder that attacks a person’s ability to talk, socialize and respond to anything around him. After years of attending special education courses offered through the Monterey County Office of Education (MCOE)—the largest provider of such classes for autistic children in the county—Felix is still severely behind other children his age.

Autism diagnoses have been on a steep rise nationwide in recent years. In 1998, the US incidence of autism amounted to one out of every 400 births. Now that rate is one out of every 166 births, according to the US Department of Health and Human Services’ Centers for Disease Control. “We have an epidemic on our hands,” US Rep. Dan Burton (D-Ind.) declared recently, echoing a growing chorus of doctors, researchers and parents concerned about the increasing autism rates.

As the number of autism-related disabilities spikes nationwide, the burden of educating autistic kids falls squarely on the shoulders of school districts and county offices of education. These agencies must find the resources to pay for all children’s special-education needs, even though districts receive a fraction of the money they need from state and federal sources. The result is that parents, who are always looking for more services, are often pitted against districts, which are trying to keep costs from spiraling out of control.

Not all cases of autism are as grave as Felix’s. There are many moderate- or high-functioning autistics who can talk a little, or respond to limited direction from parents or teachers. Regardless of where they fall on the scale, all autistic children are, under federal law, eligible for intensive—and costly—special-needs programs to help improve their development. In most cases, the earlier they get involved with the programs, and the more intensive those programs are, the better their chances are for improvement.

Meanwhile, on the scientific front, researchers are frantically searching for a root cause to the autism epidemic. Little is known for sure at this stage. But what investigators are finding points to one or several environmental triggers that bring on autism symptoms in genetically susceptible children—a harrowing thought, since nobody is really sure yet what those triggers are.

Autism is still a new epidemic, and no one has proved without a shadow of a doubt what causes it. But in less than a decade, it has become one of the most inscrutable mysteries of the medical world—one that is touching the lives of an ever-increasing number of people in this country and around the world.

• • •

The sudden rise in autism diagnoses is controversial in some circles. There are scientists who say autism isn’t actually rising in epidemic proportions, but that doctors are simply better at detecting its symptoms and diagnosing it. “The phenomenon of autism has existed most likely since the origins of human society,” wrote Morton Ann Gernsbacher, a research professor at the University of Madison-Wisconsin, in a report published last year in the journal Current Directions in Psychological Science. “No sound scientific evidence indicates that the increasing number of diagnosed cases of autism arises from anything other than purposely broadened diagnostic criteria, coupled with deliberately greater public awareness and intentionally improved case finding.”

But a report by the California Department of Developmental Services and the MIND Institute, a research hub for neuro-developmental illnesses, dismissed that assertion in a landmark 2002 report. “Speculation about the increase in autism in California has led some to try to explain it away as a statistical issue or with other factors that artificially inflated the numbers,” said UC Davis pediatric epidemiologist Robert S. Byrd, who is the principal investigator on the study. “Instead, we found that autism is on the rise in the state and we still do not know why. The results of this study are, without a doubt, sobering.”

That report showed that disorders grouped under the umbrella of autism spectrum disorders (ASD) are rising at epidemic rates in state schools, while other disorders like mental retardation, deafness, blindness and emotional disturbances remain at static levels. All ASD disorders—which include autism, Asperger syndrome and pervasive development disorders—limit a child’s ability to function.

In 1999, California schools had 9,380 students diagnosed with ASD in special education classes. By 2005, that figure had risen three-fold to 29,370.

In Monterey County, the rise has been equally dramatic. In 2001, Monterey County had only 51 ASD-diagnosed students under 21 years of age. By the 2005-06 school year that total had swelled to 200. That’s a rate of about one in every 350 students in the county.

There are many baffling statistics with autism. The vast majority of ASD cases in the state and county are boys, while a disproportionately high number of them are of Asian descent. In Monterey County, Asians represent less than 3 percent of the student population, yet they are 10 percent of ASD students.

Gail Yulich, speech pathologist and teaching principal for the Monterey County Office of Education’s ASD programs, witnessed the spike in the early 1990s.

“Before 1990, we’d see about one autistic child every three years,” says Yulich, who’s been with MCOE since 1975. “But after 1990, we found that we had to keep adding one or two classes every year to accommodate the new ASD cases.”

The cost to educate ASD-diagnosed children in special education programs is disproportional to their numbers. While ordinary pupils cost schools about $6,000 a year, an ASD-diagnosed student costs about three times that, according to a 2005 report from the Government Accountability Office.

Today, half of all the county’s ASD-diagnosed students are serviced through 25 classes run by the county office of education. These pupils originate from 16 school districts in the county, and range from infant to high school age.

Each county-run ASD classroom—located on a handful of campuses across the county—has one teacher, two or three teaching assistants, and an average of four to six students. In addition to the teachers, MCOE hires speech and occupational therapists, which are in extremely high demand statewide, to visit the classrooms about once a week. For some students, MCOE also contracts an additional personal teaching assistant who splits his or her time between the school and the child’s home.

That means that sometimes there are more adult educators in an MCOE classroom than there are children. For many ASD-diagnosed students, however, that’s simply necessary.

• • •

In a recent special-ed class for first-grade level children with ASD disorders held at Cypress Grove Charter High School, a girl diagnosed with autism spent the entire morning running back and forth, shaking her arms and moaning. She couldn’t enunciate any words, but was clearly distressed. A teacher’s assistant followed her and gently attempted to bring her back to the circle of students, but without success. The other students in the class seemed to lose interest in whatever they were doing every few minutes, and each one needed a teacher or assistant to help them refocus on the task at hand.

“The key to working with these kids is to realize that each one is totally different,” says Joe Potter of Tucci Learning Solutions, an agency that contracts special education coordinators. “You kind of have to come in everyday with a clean slate. It’s not like regular education, where everyone’s on the same chapter. In here, teachers really have to adjust to each child.”

ASD teachers work intensely with students to develop their auditory and verbal skills, which are generally lacking. For many students, such methods do bring positive results. But it’s a costly process.

The MCOE’s budget for ASD courses has risen dramatically, from $2 million in 2003 to $3.2 million in 2005, says Michele Saleh, director of the special education department. And new cases are arriving fast. Saleh says that last week, another 12 students were referred as possible ASD cases.

It’s unclear how the office’s budget will be affected if Monterey Peninsula Unified School District (MPUSD), which supplies one-quarter of the county’s ASD-diagnosed students, starts to pull its students back into district-run programs. Jeff Gabrielson, special education director for MPUSD, confirmed that MPUSD is planning to do just that during the next four to five years.

Currently, MPUSD pays the county office of education about $24,000 a year to educate each of the approximately 200 special education students it refers.

Gabrielson says keeping those special education students at MPUSD instead of referring them to county programs would make it easier for those children to transition into district programs. Another benefit for MPUSD would be that it could keep about $3.9 million it now pays to MCOE to educate special education students, plus about another $1 million in state attendance funds, if it stopped referring students to the county. That equals nearly $5 million in savings, or 9 percent of the district’s total $55 million annual budget.

Some parents are weary about such a change. Susan Oros, president of the MCOE Special Education Parent-Teacher Association, says that because MPUSD is facing tough financial times, she fears that the district will not be able to handle this big responsibility. 

“I fear that the special education students will eventually get pushed aside as other district needs weigh on [MPUSD’s] administration,” Oros says.

To make things even harder, Gabrielson says, the state and federal governments rarely pay districts what they promise for special education costs.

Last year at MPUSD, for example, the district had to cough up an additional $5 million (besides the $5 million that went to MCOE) out of its general fund to pay for special education services.

“Special education is an unfunded mandate,” Gabrielson says. “Few people know just how poorly funded it is from the state and federal governments.”

• • •

Money is often an issue for parents of autistic children as well. Many parents, desperate for their children to get better, try any number of expensive experimental treatments. Stories abound of families who have gone bankrupt paying for potential cures for autism, including chelation, a process which cleanses the body of mercury and other potential toxins.

But for others, money is the least of it.

Sandra Cabrillo [the real name of family is being withheld by request] is one of them. In 2003, Sandra and her husband Rafael learned that their son Jeremiah was autistic. She couldn’t understand how that was possible. “He was fine before,” Sandra Cabrillo says. “I have the videos that prove it.”

Indeed, she does. She pops the tape into the VCR in her Marina apartment and presses play. Jeremiah, born in 2001, flashes on the screen. He’s about 1 year old. A guitar sits on his legs. His face is beaming as his dad sings him a Christian song. As the camera zooms in closer to his face, Jeremiah starts banging the guitar, in fine rhythm for a 1 year old, and begins singing.

“This is how he used to be,” Sandra says. Jeremiah is now a 5 year old who speaks only a few words. After 20 months of developing normally, Jeremiah started walking on his toes. He started humming to himself. He’d slap his head endlessly for no reason. Cabrillo told her pediatrician about his strange behavior, but he blew it off—a common experience for many parents of autistic children.

“Well, he looks normal to me,” Jeremiah’s pediatrician told Sandra during one visit, she recalls.

Sandra was undaunted. She suspected autism was the culprit, and pleaded with the doctor to authorize some tests for him at Stanford University. Eventually, he relented.

The tests came back positive. “In some ways we were ready for it,” says Rafael, a bus driver. “We wanted a legal document that showed that he had what we thought he had.”

They had reason to be thinking along those lines, because almost from the beginning, the Cabrillos faced a stiff sea of doubt about their son’s ailment from friends and doctors alike. Hardly anyone believed Sandra, for example, when she’d explain that Jeremiah starting exhibiting autistic symptoms after he was about 20 months of age—not before. “People thought we were out of our minds,” she says.

This seemingly benign observation, that a child “comes down” with autism-related symptoms at about 2 years old, has been hotly disputed by some doctors and scientists for years. The reason is that if true, it means something triggered those symptoms—that the person wasn’t born with them. And to acknowledge that means a mysterious force or forces are wreaking havoc on hundreds of thousands of people’s lives.

Today, research is showing that these parents’ perceptions were right on.

Isaac Pessah, director of UC Davis’ Center for Children’s Environmental Health and a member of the MIND Institute, says new research shows that regression really does occur with some children after developing normally for a time. “It occurs much more dramatically in some kids than in others,” Pessah says.

But why does it happen at all? What’s causing autism? How can it be stopped?

Pessah says no one knows for sure—yet. The leading theory is that some people—particularly boys, who represent more than 80 percent of autism cases—are born with a genetic predisposition. When faced with an environmental trigger or triggers, then autism-related disorders set in.

“Autism probably represents several disorders that we now talk about as a single thing,” Pessah says.

Currently, the MIND Institute is in the middle of an extensive study looking at possible triggers for autism-related disorders: mercury, flame retardants, PCBs and other chemical substances. Of those being studied, none of them have caused the uproar that organic mercury has.

What makes mercury a particularly sticky issue is that the Centers for Disease Control in the late 1980s approved a series of childhood vaccinations that included the preservative thimerosol, which is composed of 49 percent mercury.

Today parents like Marcela Salaiz and Sandra Cabrillo swear that their children started developing autistic symptoms days after getting their round of childhood vaccinations.

The CDC has refuted any link between thimerosol and autism, but the CDC’s credibility on the subject is starting to crack. Last year, Robert F. Kennedy Jr. published an investigative piece in Rolling Stone magazine detailing how top CDC officials attempted to quash studies from their own researchers that showed a thimerosol-autism link. Other research shows that the symptoms of mercury poisoning are awfully similar to those of autism-related disorders.

Federal health officials continue to deny any such link to this day, but states like California have already banned thimerosol, which is also found in some flu vaccines.

• • •

Even if a cause for autism is eventually found, a cure may not be discovered for some time.

That means an increasing number of parents from all walks of life are adjusting to life with autistic children.

For the Cabrillo family, that means getting angry stares from strangers when they take Jeremiah out in public. Like most autistics, Jeremiah looks normal at first glance. But being in a supermarket causes him an overload of sensory input. So he throws a fit and starts screaming.

“People make comments under their breath, like, ‘Why can’t they control their child?’” says Sandra Cabrillo, who also cares for Jeremiah’s older sister. “It makes me so mad when I hear that.”

Rafael Cabrillo admits that what makes his heart sink is whenever they get together with children from other families and can really see and compare how far behind Jeremiah is in his social skills.

Marcela Salaiz has found a solution for the angry and weird stares they get out in public. She made a shirt for Felix that explains that he has autism, and expresses her own thoughts on the origin of his illness. “My name is Felix,” states the shirt in big white letters on the front. “I have vaccine-induced autism, AKA mercury poisoning. My mental age is 2. I’ll be one of about 4 million severe autistics in the US by 2015.”

“My other son, Fernando, won’t go out with Felix if he’s not wearing the shirt, because he’s tired of having to explain to people what’s wrong with him,” she says.

Susan Oros’ daughter, Samantha, breaks the autism stereotype in two ways. First she’s a girl. And second, she smiles a lot. Diagnosed with autism at 2 and a half years of age, Samantha is now 6 years old and still hardly speaks a word.

Oros says one of the hardest things about raising a child with autism is setting an educational plan in partnership with educators, which she had to do before Samantha could enter MCOE’s special education programs.

“It’s so tempting to say that I want her to read by the time she’s 8 years old, or things like that,” Oros says. “But even if she gains those rote academic skills, I worry that that’s not going to be an indicator for her success. Or for happiness in her life.”