Desire for answers rises with autism cases

Sunday, July 13, 2003

Carly Rodriguez (Langseth) reads "Harry Potter and the Sorcerer's Stone" as her tutor, Ryanne Leek, listens Thursday at the Rodriguez home in north Chico. (Glenn Fuentes/Enterprise-Record)

By LARRY MITCHELL - Staff Writer

It's tough raising an autistic child, as more and more parents are learning.

Autism is on the rise, dramatically. So far, no one knows why.

"Something is going on with our kids. Autism was a very, very rare condition. It's not that way anymore," said Laura Larson, executive director of the Far Northern Regional Center, a Chico-based agency that serves people with developmental disabilities, including autism, in the north state.

Larson said increasing rates of autism have been recorded in industrialized nations all over the world.

Between 1998 and 2002, the number of people with autism being served by the California Developmental Services System nearly doubled, according to a report from the state Department of Developmental Services. Between 1987 and 2002, the population of Californians with autism grew by 634 percent.

Larson said in 1998, her agency was serving 140 autistic clients. Now, there are 284 such clients.

It's apparent that the increase is real and not due to changes in how cases are being reported, she said.

Chico pediatrician Dr. Patrick Tedford agrees. He said he sees proportionally more cases now than he did when he first began practicing medicine.

"It's devastating," he said. "It's very, very difficult for parents."

Autism is a complex developmental disability, the result of a neurological disorder, that affects the functioning of the brain, according to the Autism Society of America. Usually, it is severely disabling.

Autism affects a person's ability to communicate, form relationships with others and respond appropriately to the environment. Many autistic children react to certain stimuli in ways that seem bizarre. To some, the smell of bubble gum or someone brushing against them may be unbearable. Certain noises can be agonizing.

Autism cases vary greatly in severity. About 50 percent of people with autism never learn to speak, said Teresa Wolk, president of the local chapter of the Autism Society.

Many autistic children must continue to live with their parents as adults or reside in group homes. But others can live independently and support themselves. Some even exhibit brilliance in certain areas.

Rick Rollens, a member of the Autism Society's national board, mentioned what he called "the geek syndrome." Some introverted professors and scientists who know vast amounts about certain narrow fields are in fact autistic.

The huge increase in cases has spawned concern about autism. Research has intensified, Larson said, adding she believes causes of the rising number of cases will be discovered, perhaps before long.

Larson speculated that environmental causes - perhaps certain childhood vaccines - may be implicated.

However, Curtis Allen, a spokesman for the National Immunization Program of the Centers for Disease Control, said no scientific evidence has been found linking vaccines with autism. Many studies of this question have been completed while others are being initiated.

Dr. Tedford said he's aware of the controversy over a possible link between autism and childhood vaccines, particularly the vaccine given to protect against measles, mumps and rubella.

Many parents express concern, he said. While he understands their fears, he points out that no scientific evidence has been found to suggest vaccines cause autism. He said he believes the relationship between vaccinations and autism is "temporal." That is, children get a number of vaccinations at about the same age when those with autism typically start showing signs of the condition.

Earlier this year, researchers from the UC Davis MIND (Medical Investigation of Neurodevelopmental Disorders) Institute began a five-year study of more than 2,000 children in California aimed at learning more about the causes of autism, said Martha Alcott, a spokesperson for the institute, which focuses on autism and related disorders.

She said some scientists believe certain children may have a genetic predisposition to autism. They are searching for "triggers" in the environment that could cause the disorder to develop. Researchers have looked at certain chemicals that were believed to be harmless but later turned out to be toxic.

"The vaccine issue is a very emotional one for parents," Alcott said. "The MIND Institute recognizes many parents believe their children's autism may have been caused by vaccines." Studies of that possibility are ongoing, she said, but she added so far no connection has been confirmed.

Larson said many parents of autistic children endure great difficulty in caring for them.

This year, Assemblyman Dario Frommer, D-Glendale, introduced Assembly Bill 636, which would set up an office within the state Department of Disabilities to provide information to parents of autistic children and to help them obtain proper services.

The bill received support but because of the budget crisis, it has faced some hurdles, said Karen Kim, press secretary to Frommer.

Meanwhile, some parents of autistic children have been speaking out against proposed state budget cuts they say could reduce their services.

Autism, with its lifelong consequences, affects children in varying degrees. Many are severely disabled while others are only slightly affected.

The Enterprise-Record interviewed parents of three autistic children. All emphasized that early intervention was key in helping their children develop as much as possible. They also stressed the importance of being dedicated to the task of parenting and holding high expectations.

"When you find out your child is autistic, there's incredible grief," said Kimberly King of Orland. "I grieved when I realized my son would never play baseball or do a lot of things. But now I've refocused on how much he is able to do - so much more than we ever thought.

"We insisted he learn to talk. He had to utter a sound to get a drink. We'd tell him, 'Say drink, Jesse, say drink.' "

King and her husband, Ernie, began looking for help about seven years ago when Jesse was 2. He was having temper tantrums that were much worse than the "terrible 2's" ought to produce.

"He wasn't talking and didn't seem to understand what we were saying," King said. "He'd walk in the kitchen, and stop and scream. He didn't point at things. He wouldn't make eye contact."

She read a book about autism, which described Jesse pretty accurately, she said. After that, he was tested and diagnosed at the Far Northern Regional Center.

"We had some pretty horrible years," King said. There were problems with toilet training and just keeping him in sight.

"We went to the mall to get him tennis shoes and he ran away," King said.

Something that most families with an autistic child will tell you is that for a time, at least, they become socially isolated. Because the child can get so out of control, it's hard to go anywhere.

Through a lot of hard work with specialists, Jesse has made a lot of progress. "He's very highly functioning," King said. "He has almost normal communications skills. He likes to play video games and loves to read comic books."

Like many autistic children, he has awkward body movements and walks on tiptoes, King said. Many children with autism display repetitive movements, like hand slapping, head-banging or twisting their fingers.

Years ago, most autistic children were put in institutions. Nowadays, most live at home with their parents, although some cannot be managed at home.

Whenever possible, the goal of most parents is to have their children attend school with ordinary students. That kind of exposure gives autistic children the best chance of developing to their full potential, parents feel.

Jesse attends a regular classroom at Fairview School in Orland. An aide works with him the whole time he is in class.

"We're hopeful about Jesse's future," King said. "We know he could live in a group home. We hope he could go on to college. He may fit in with academic society."

Raising Jesse has presented real challenges for her family, King said. One of the most painful things was the lack of understanding and even blame that came from some people. Someone told her Jesse just needed a spanking, she said. "Many people blame the parents. That's a biggie. It's very hurtful."

King said she had to become an expert on autism because so many doctors and educators knew little about the condition. She also had to become an expert on the law and an aggressive advocate for Jesse so he'd get all the tests and services he needed.

Rick Rollens of Granite Bay, near Sacramento, gave up his career in the state Capitol after his son, Russell, was diagnosed with severe autism. Now he uses the expertise he gained as secretary of the state Senate to advocate for legislation helpful to autistic children and their families. He is a member of the national board of directors of the Autism Society of America. Rollens and three other parents of autistic children were instrumental in starting the MIND Institute at UC Davis Medical Center, where researchers, hoping to discover a cure, work to learn more about autism.

The big increase in autism cases consists mainly of the severely disabling "full-syndrome autism," which is what afflicts Russell, Rollens said. The epidemic, as he calls it, has the potential to put a huge strain on the state's resources as large numbers of autistic children grow older and need more costly services.

Rollens attests to the rigors of raising an autistic child. Often, the pressure is so great, parents split up, he said.

For years, he said, "We were literally captives, with a child who screamed for hours on end, didn't sleep and was destructive. We slept in shifts. Fortunately, my wife was at home. It was very, very difficult."

Russell, who is 12 now, is severely disabled although his behavior has improved greatly, Rollens said. "He tests in the normal intelligence range. I can ask him to get me a drink of water, and he'll do it. But he can't talk about it."

He can do many things other kids can, like ride a bike and swim. But he needs to be watched all the time. He has no sense of danger and could easily run away. He'll probably always live with his parents.

Russell's autism has profoundly affected the lives of Rollens and his wife, Janna, and also their 17-year-old son, Matthew, who's helped care for his brother for the last 10 years. The two boys are very close, Rollens said.

"We're saddened by the loss of Matthew's childhood," Rollens said, "but we took a philosophy that we weren't going to sugarcoat any of this."

As a result, Matthew is "wise beyond his years," Rollens said. Granite Bay is a wealthy bedroom community, where many teen-agers seem to have life pretty easy.

At times, Matthew has come home from school shaking his head over his classmates' griping about not getting the tee time they wanted at the golf course. "Dad, I know what real problems are," he's told Rollens.

When Ray Rodriguez and Christine Langseth of Chico began to suspect that their daughter might be autistic, they resisted the idea.

"No one wanted to believe that this little girl had a disability," Rodriguez said. Nevertheless, he and Langseth are grateful their pediatrician, Dr. Paul Wassermann, suspected something was wrong early on. One sign was that in day care, Carly wasn't making eye contact with anyone.

"The keys to success are early intervention and socialization," Rodriguez said. "Before Carly was 3, we had her in with Far Northern Regional Center. She was getting individual speech therapy at Chico State."

Still, it was a hard road. "Her worst grade was kindergarten," Langseth said. "She didn't understand how to be with other children, and she couldn't understand structure, moving from routine to routine."

When Carly was in first grade, her expressive language was still bad, and other kids didn't seek her out," Langseth said, but there was one sign Carly's autism might not be so severe: "When other kids got into trouble, she'd start crying," Langseth said. That was unusual because autistic children have great difficulty comprehending how others feel.

Today, a casual observer would have trouble detecting signs of autism in Carly, who is 11. She talks somewhat stiltedly, but seems lively and playful and engages in many activities. She's in Girl Scouts, a chorus and martial arts. In the fall, she'll continue at Marigold School. She's a talented painter.

Of course her parents are very familiar with what makes her different. They keep her on a tight schedule, trying to maintain structure in her life.

Carly seems pretty much like "a normal kid" despite a certain lack of social skills, Langseth said. "I think she's funny and creative."

"We're looking for life to engage her," Rodriguez said. "I have high hopes."

People who want more information about autism can get it locally from the Chico office of the Autism Society, said Teresa Wolk, who founded and is president of the local chapter. The phone number is 897-0900.

Wolk said she and Peter Wolk, the father of her 12-year-old autistic son, Alex, have been able to obtain the best in treatment for him. She feels an obligation, she said, to "give back" so that less fortunate parents will benefit. She knows of about 100 families with autistic children in the north valley.

She directs the Little Red Hen nursery, which raises money to help disabled kids, and also holds a swim class for disabled children at her home.

Alex is pretty high functioning. He's attended Sierra View School and will start Bidwell Junior High in the fall.

He talks, but like a lot of autistic children, his conversation is sometimes kind of strange.

Many autistic children latch onto phrases they hear, especially from movies and TV. Then they'll repeat those phrases, more or less appropriately as responses to questions they're asked or things that happen.

In his earlier days, at school, Alex would sometime act up and Wolk would have to go bring him home.

On one such occasion, she said, she loaded him into the car and they started driving from school to home.

Alex said to his mom: "Whew. Thanks for saving my life."

Wolk wondered where that remark came from and later found it was right out of a video Alex had watched several times.

Wolk cherishes the humor in incidents like that.

"There's a little gift there. Sometimes you can just enjoy life with him. My son brings me such joy."