Lynn Bariteau gets a hug from her son, Tyler Fihe, who is autistic. Sentinel Photo by Shmuel Thaler

Wave of local cases threatens school, social service systems

By PEGGY TOWNSEND
Sentinel staff writer

Seventeen-year-old Tyler Fihe lives in a world few people can understand.

He can watch a single ‘‘Sesame Street’’ video for hours at a stretch and play one song on his CD player so many times it becomes almost unbearable to those around him.

He’ll flick his fingers into a shape like a shadow-puppet dog and stare at it like he was seeing his hand for the first time.

And if you let him, Tyler could rock in one chair for a whole afternoon.

Tyler is autistic, a boy at the forefront of a tidal wave of kids like him — and one that threatens to swamp school and social service systems in the coming years.

It is a wave that has left researchers wondering if the leap in the number of autistic children is simply a new way of diagnosing what has been there all along, or if there is something in the environment triggering a string of cases.

In Santa Cruz County, the number of children diagnosed with autism and autism-related disorders has nearly doubled during the past 10 years — with an apparent, and unexplained, concentration of cases in the Aptos area.

Scientists know little about what causes the condition, although a surge of money has gone into research, including the establishment of an autism study center called the M.I.N.D. Institute at UC Davis.

Some scientists believe autism has both hereditary and environmental origins — some kind of genetic hard-wire that makes a child more susceptible to an outside trigger.

Everything from childhood vaccines to viral infections to pesticide use are being examined as potential causes.

But whatever the reason, no one disputes that autism numbers are on the rise and will have a substantial financial impact on the state and an even bigger emotional impact on the families it affects.

For Tyler, who uses a computer device called a "Lightwriter" to communicate, it is more a matter of getting people to understand the world he lives in.

"I think people need to see beyond what the eyes can see. To see BE-yond" he says, repeating the words in a sing-song voice as he types them into the computer.

He types some more.

"I can’t talk like you," he says. "But I can think.

"Sometimes I’m thinking so much I feel like I’m going to burst wide open."

A sudden jump
Autism used to be a rare disorder.

In the 1980s, four to five out of every 10,000 children were thought to have autism or an autism-related disorder.

Now, according to a study from the Centers for Disease Control, that number is 34 in every 10,000 children.

It’s a staggering increase to anyone in the educational, medical or social services field — and one that has been closely examined.

A 2002 study published by Kaiser-Permanente’s Dr. Lisa Croen suggested the increase may be due to doctors diagnosing children as autistic instead of mentally retarded — as they would have 20 years ago.

It’s what’s called "diagnostic substitution."

But now, Croen says, the more she looked at the data, a change in diagnosis might not be the whole reason for the jump.

In fact, she says, more study needs to be done.

"What we do know," Croen says, "is that autism is very common, much more common than everyone thought."

In Santa Cruz County, autism numbers don’t seem so disturbing until you look at the range of ages of those affected by the disorder.

There are 113 people in the county diagnosed with autism, according to the state Department of Developmental Services

Sixty-nine are under 20 years old.

But of those, 45 are under the age of 10.

That means about twice as many autistic children are being diagnosed in Santa Cruz County now, than 20 years ago.

It’s a bubble that seems destined to grow.

Santee Rogers is head of the San Andreas Regional Center, a program which provides services to about 9,000 disabled clients, including those in Santa Cruz County.

The center’s Early Start Program for children under the age of 3 is being swelled with children showing early signs of autism and autism-related disorders.

"There are clear indications the trend is continuing," Rogers says.

What’s in the environment?
Tyler was 2½ when his mother, Lynn Bariteau, discovered he had autism.

"Tyler wasn’t responding," Bariteau says, sitting in her modest home on Santa Cruz’s Eastside. "I had started this baby-sitting co-op and the other mothers said they noticed if Tyler was playing with objects on the floor, he wouldn’t respond when they called to him."

One mother even banged a pot behind Tyler. He didn’t flinch.

So Bariteau had her son’s hearing checked.

It was fine.

That’s when doctors at UC San Francisco diagnosed Tyler as autistic.

While most people think of Dustin Hoffman’s "Rain Man" when they think of autism, the condition has an array of symptoms.

It can range from cases like Tyler’s — kids who don’t make eye contact, flick their fingers, repeat words and phrases instead of making normal conversation and seem to live in their own world — to less severe cases.

One of the more common autism-related disorders is called Asperger’s — dubbed the "geek syndrome" by Wired magazine because of its high incidence in Silicon Valley.

Children with Asperger’s seem to walk a line between genius and a kind of social cluelessness — demanding routine, obsessing on one game or activity and having little or no ability to relate to those around them.

In an interesting, but anecdotal, article in Wired magazine, writers theorized that Asperger’s didn’t seem too much different than the obsessed genius of computer code writers and developers.

And when one geek married another geek, well...

But scientists generally reject the idea of this kind of selective breeding. There are no "typical" parents who produce an autistic child, they say.

They do believe, however, that while there is a genetic component — if one twin has autism there is a 60 percent chance the other will too — there seems to be another part of the equation.

"I do worry that it is either something in the environment or something in current pediatric practice that might be contributing to the increase," says Dr. David Amaral, research director for the M.I.N.D. Institute.

"Unfortunately, at the moment, we don’t have a clear, leading hypothesis about what causes autism."

Speculation has focused on the theory that a genetic condition could make a child more susceptible to an environmental trigger — anything from childhood vaccines to a virus to pesticide use.

Mothers of autistic kids suggest everything from the antibiotics given to their children, to the drugs administered to prevent labor to pesticides used around the home.

But the truth is, no one really knows.

"It," says Amaral, "is like a detective story without a lead."

While there is debate about whether there are actual clusters of autism — as has been suggested for the Silicon Valley — Santa Cruz County seems to have its own concentration of cases.

A cluster of about 30 autistic children is found in Aptos — although whether that is a function of socioeconomic status that make parents more likely to know how to seek out special services, or whether it is something else is not known.

Amaral of the M.I.N.D. Institute says with the sudden surge in cases, it’s important to focus effort and money to find the causes of autism.

"What is absolutely true is that there are more children with autism that at any point in history," Amaral says.

"I can’t explain it simply on a genetic basis or population increase, but it looks like something new has been introduced into the equation in the last 20 years."

Another side of autism
Kelly and Lex van den Berghe are sitting at their Santa Cruz kitchen table with their son, River, when their oldest son, Corbin, walks in.

Like his younger brother, Corbin wears hip silver earrings and baggy pajama-style pants.

But where his brother, River, is interested in the visitor who has come to their house, Corbin treats the guest with about as much interest as a new house plant.

"I’m looking for my sweatpants," he says and wanders off.

Corbin, 10, was diagnosed with Asperger’s, a condition that makes it difficult for him to have social relationships and makes him obsess on things like skateboarding or a single, small cardboard ‘‘Sesame Street’’ sign.

He is intelligent and a master of his favorite video game. But he will fly into a rage if his routine is disrupted — say for instance, if the family goes to a motel and the television channels are different — and blurt out statements that make people look askance at him.

The van den Berghes, who are advocates for Asperger’s research and education, said the diagnosis was difficult at first.

"The first thing you think is "Rain Man," Kelly says, folding her hands on the table.

But Kelly dove into literature about autism and Asperger’s and became an advocate for her son.

He is now enrolled in regular classes at his elementary school and seems to be doing well.

But Corbin’s father, Lex, (who writes for the Sentinel) worries what the future will hold for his son as he moves through junior high and high school and into adulthood.

"I worry he’s not been given the same arsenal of tools on his toolbelt to deal with the world," Lex says.

"In practical terms, I don’t want the world to chew him up and spit him out."

‘These kids are unfathomable’
Autism was first detailed in the ‘1940s — initially by Leo Kanner of Johns Hopkins and then a year later by Austrian pediatrician Hans Asperger.

Kanner, a psychiatrist, described children who were withdrawn, preoccupied with routine and who had language problems, but did not appear to be mentally retarded.

The children Asperger described were socially inept, highly verbal and quite bright, but would develop bizarre obsessions.

Both men noticed the characteristics tended to run in families — the product, Kanner reported, of cold mothers and intellectual fathers.

Kanner’s idea of frigid parents was not proved but more theories surfaced as the years went by.

One early theory ran that autistic children were the result of "refrigerator mothers — mothers who rejected their children and silently withdrew from them," says longtime Aptos clinical psychologist Dr. Donald Saposnek.

The idea was to take them from their mothers and have them raised by a loving third party.

There were theories of brain lesions and, at one point, even a bizarre hypothesis that these children came from another planet.

The condition was baffling to scientists, Saposnek says.

"You could clang a pot behind their heads and they did not flinch. You could shine a spotlight in the eyes and they did not blink.

"They could control their heartbeat and their breath.

"They were literally unfathomable," says Saposnek.

He tells stories of how autistic children he has known do not seem to get sick and how some have amazing abilities of balance and coordination.

Now theories tend more toward genetic and environmental factors as a cause for autism and its related disorders, he says.

Treatment programs for autistic kids are just as diverse as the theories about why it happens.

One of the most infamous treatment advocates was Dr. Ivar Lovaas, who pioneered the idea that you could train these children, using electrical shocks.

"He would put two kids in a room with an electrical grid on the floor and the kids would do their autistic things and they would be shocked" until they learned to avoid those behaviors, Saposnek says.

The method fell out of favor for obvious reasons.

There were anger management treatments and behavior patterning programs.

Now parents are using everything from medication to changes in diet and to using videos to teach kids to perform basic tasks.

But everyone agrees early diagnosis and intervention is key for these children.

Before intervention, these kids almost always "took a course into severe disability," Saposnek says.

"Now we see a whole spectrum of cases and almost all autistic kids have some kind of intervention.

"They don’t look so much alike anymore."

Crisis looms
What the increasing number of autism cases means for sure, is that school districts and social service programs will be hit especially hard in the coming years.

Specialized training for teachers, speech therapists, occupational therapists and more assistants in classrooms are just some of the increased needs that school districts will have to address.

"We weren’t prepared for it (the jump in autism cases). It took us by surprise," says Carol Lankford, director of special services and special education programs for the South County area.

"It’s going a significant drain on financial resources."

She and others are looking into ways to pool resources with social service agencies to lower costs for school districts and to train district employees so there is no need to hire outside contractors.

The problem is, while many special education services are required, they are not fully funded by the federal government, Lankford says.

That means money will have to come from an already shrinking general fund.

With about 50 autistic children in the South County special education program and almost 80 in the northern program at recent count, the numbers are on the rise.

Last year, the number of autistic kids in the North County schools increased by 28 percent.

"A big part of the issue is declining enrollment in regular education programs," says Dan Cope, head of the North County Special Education Local Planning Area. "But there has been no decline in special education enrollment."

For the San Andreas Regional Center, which provides services to the disabled in Santa Cruz and three other counties, the rise in autism cases also means more expenses.

Costs for therapy — and housing and supervision as these children age — will climb as more children come into the system.

Rogers, who heads the agency, says he and others are lobbying the Legislature to get more funding for what seems to be a looming crisis.

But he worries that instead of adding money, the state will just cut the services that are required under one of the most flexible and humane systems in the country.

He worries where these children will live and how they will cope as adults — whether they can even be kept safe.

"They demand so much more service, we don’t even have a way to put a number on it yet," Rogers says.

It’s a problem, he says, that keeps him awake at night.

Stepping out
Tyler lies across a leather office chair, bouncing his head against a padded corner of the room.

He moved into a group home a few months ago.

Part of the reason was financial. His mom needed to rent out a room in their house to help meet expenses.

The other was to begin the process of Tyler moving out in to the world.

"Do you want a snack?" asks Niles Atallah, a tall, dark-haired young man who works with Tyler and two other disabled boys at the home.

Tyler says "yes," but continues to rock in the chair.

"Come on, buddy, focus," says Atallah, luring Tyler out of the chair and into the kitchen where he sits down to eat a bowl of Pirate Booty and thumb through a ‘‘Sesame Street’’ book.

Like lots of teenage boys, Tyler likes to lift weights, go to the beach and sit in the hot tub — and the men who run the house try to keep him busy.

They provide him with his favorite foods — crispy waffles with jelly, rice cakes with cashew butter, chickenless nuggets. And they set up the computer so he can play his ‘‘Sesame Street’’ games.

But none of the men can communicate with Tyler. They have not been trained yet to help Tyler use his Lightwriter computer, and he can’t do it on his own.

"Tyler has a good disposition, but he does get sad, that’s for sure," Atallah says.

Keeping him busy keeps the sadness at bay.

Back at his home with his mother, Tyler sits on the couch and types on his machine.

"Maybe I can help people learn this simple truth," he says.

"If we never made judgments about each other, then the world might be a more peaceful place."

Contact Peggy Townsend atptownsend@santa-cruz.com.

Technology helps disabled communicate with others

By PEGGY TOWNSEND
Sentinel staff writer

Tyler Fihe’s sentences come out like a song.

"The thing I like MOST about Santa Cruz High School is the kids and the TEA-chers," he says. "They are very FRIEND-ly."

Tyler’s mom, Lynn Bariteau, can forgive her 17-year-old son’s enunciation.

Tyler is autistic and until he was 6, he couldn’t communicate at all.

Now, because of something called Facilitated Communication, Tyler is able to speak his mind, according to Bariteau.

Facilitated Communication allows a disabled person to communicate using a computer device called a Lightwriter.

A helper steadies the communicator’s typing hand as he or she types out their sentences, with the goal eventually being independent typing.

Brought to the United States in 1989 by Douglas Biklen, a professor of special education at Syracuse University, the method has gained a host of adherents.

Facilitated Communication, according to Biklen, often reveals normal or even superior intelligence in those who could not communicate before.

But the method also has its detractors.

The American Academy of Pediatrics and the American Psychological Association have both said controlled studies show the technique does not work.

The typed communication, they say, is done by the helper — whether intentionally or not.

Proponents counter with their own studies. But for Tyler — who has three or four people trained to help him use the Lightwriter — the method has become part of his life.

In fact, Bariteau and Tyler are launching a project to teach this way of talking.

"The Lightwriter has really helped me a lot because," Tyler types, then listens as the computer repeats the sentence in a mechanized voice, "I can hear the words as I type them."

"As I TYPE them," he sings out.

His mother sits by his side, and holds her hand under his elbow.

Tyler, she says, has one more thing he wants to say: He lost his favorite ‘‘Sesame Street’’ video — the one with the pinball sequence, she says.

"Yes," he says, "I want you to ASK the newspaper AUD-ience if anyone has an old SES-AME Street video, with the pinball part in it."

Lynne Bariteau and Tyler will give a talk and demonstration about Facilitated Communication from 10 a.m. to noon March 29 at St. Joseph’s Catholic Community, 435 Monterey Ave., Capitola. Tyler will be joined by Ross Lyons, a 22-year-old with Down syndrome. The talk is sponsored by Ministries with People with Disabilities and refreshments will be provided. A $5 donation is requested. For information, call 429-8914.