A world apart: Children live with the frustration of autism

Joey Tonastia works on a word search assignment in his Ladd Lane

Doctors kept telling Karen Tonastia that her son, Joey, was

He’s a boy,

they would scoff.

Boys often develop slower. It’s nothing to worry about.

But Tonastia, who lives in Hollister, knew the problem went
deeper than that. Her son didn’t communicate, didn’t react the way
that other small children do. It was as if her toddler was rigidly
programmed, and the smallest deviation sent him into a tantrum.
Doctors kept telling Karen Tonastia that her son, Joey, was fine. “He’s a boy,” they would scoff. “Boys often develop slower. It’s nothing to worry about.”

But Tonastia, who lives in Hollister, knew the problem went deeper than that. Her son didn’t communicate, didn’t react the way that other small children do. It was as if her toddler was rigidly programmed, and the smallest deviation sent him into a tantrum.

“The terrible two’s,” people would knowingly say when Tonastia described how her son would jump out of his car seat and kick at her if she took a different route home than usual.

But the problem wasn’t Joey’s sex or his age. The problem, which was finally diagnosed near Joey’s fourth birthday in 1998, was a medical condition that is still little understood by the medical community – autism. The condition will stay with Tonastia’s little boy for the rest of his life.

A pervasive developmental disorder – one that affects a person’s overall development – autism affects a person’s ability to communicate, both verbally and non-verbally, impairing his or her ability to form relationships or interact with society at large.

A diagnosis that is on the rise nationwide, according to the National Institutes of Health, it also is the topic of new studies and speculation, though its origin is still unknown.

The rise in diagnosed cases isn’t small, either. California alone saw a 273 percent rise in new cases from 1987 to 1998, according to a 1999 report by the state’s Department of Developmental Services, and one out of every 200 Californians is estimated to be autistic, according to pediatrician Dr. Bruce Yager, a Stanford and Yale-trained pediatrician who practices at San Benito Pediatrics in Hollister.

Other doctors quoted in the DDS study have placed the number as high as one in 166, while the National Institute of Mental Health provides a more conservative estimate of one in 500.

Some health professionals debate whether the actual incidence of autism is on the rise or whether the public’s awareness of the disease is leading to more frequent diagnosis, but parents see it as a silent epidemic snowballing into public view.

“There’s a fabulous quote in Sherlock Holmes, where he’s saying, ‘You would swear that no one is ever murdered in their bathtub in London, but then your aunt is murdered in your bathtub, and you realize someone is murdered every week in theirs,'” said Kate Weber, the San Jose mother of an autistic son and leader of an autism support group for Santa Clara County. “You don’t really hear about something like this until it affects you or until someone with a platform – a celebrity people will pay attention to – has a reason to care about it.”

Some scientists believe autism to be a genetic defect, much like cystic fibrosis or dwarfism, while many parents’ groups have embraced the idea that the disease is in some way linked to heavy metal poisoning or childhood immunizations for measles, mumps and rubella.

“There are tons of leads,” said Yager. “They’re like little threads, and we’re trying to pull them all together.”

Though autistic children vary from those who are mildly affected to those whose cases are severe, many present similar problems.

The most common among these is the inability to develop or a delay in developing language skills, but the compounding of problems that leads up to this result starts much earlier.

“One of the things that happens sort of magically with babies is that they begin to understand the interaction of intention and meaning long before they can speak,” said Yager. “They know that mom or dad or the dog can have these, and they know that the apple and the banana and the refrigerator do not.

“But when in the development of a child, these things don’t become clear, how does the child learn to ascribe intentions to their mother? To make agreements with her? To build a relationship with her?”

By the age of nine or 10 months, said Yager, the average child will know how to differentiate between positive and negative intent.

“If you take a spoon full of food and suddenly pull it away, the normal child will immediately look at your eyes to read your intentions,” said Yager. “If you have a smile on your face, they’ll realize it’s a joke, and they’ll probably laugh and think it’s a game. If you look angry, they might cry. Autistic kids don’t do that.”

The struggle to overcome such a developmental shortfall is long and arduous, often requiring intensive one-on-one therapy over the course of years, and results are often only partial.

Tonastia’s son now sits through regular classes at Ladd Lane Elementary School in Hollister with other 11-year-olds. His full-time aide sits with him throughout the day, and helps him with his homework at night.

The aide has taught him things Tonastia never thought Joey would learn. He reads. He speaks in stilted sentences of partial information, but his message gets across.

The process may sound painful, but it’s what’s best for Tonastia’s son, said Dr. Yasmeen Gangani, a pediatrician who recently moved her private practice from Gilroy to Morgan Hill.

High-functioning autistic children and those who get intensive, long-term help early on stand the best chance of being able to interact normally with society later on in life.

“Rather than having mom and child at home – I think that’s not very good for a child that’s autistic – I think it’s better to have them in a school setting if possible,” said Gangani. “You can give them speech therapy and occupational therapy, have the child in an area where they have more interaction with other children and have a one-on-one tutor. Those things are the best, but they can be expensive.”

Still, the peace of mind that came with knowing, even if it meant knowing that there would be no cure, was worth the price for Weber.

“You have to pursue the thing that works for your child,” she said. “It’s not addition and multiplication. It’s not standard and simple. You add two and two together over and over and you get four every time. But here, you apply the same therapy over and over and you get varying results.”

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