Autism: A Hidden Epidemic

By Jennifer Liss, WireTap. Posted July 10, 2006.

[Editor's Note: this article is half of a two-part special on autism. Be sure to read Autism: the Art of Compassionate Living.]

With a full head of thick berry-red hair and large auburn eyes, Dante Squarzon is a beautiful child. At the dining room table of his family's minimally decorated San Mateo town home, he quietly eats homemade gluten and nondairy pizza. When he's done, without being asked, he places his dish in the kitchen sink. He drops a sink towel. As Dante bends down to pick it up, his hands flutter rapidly at his sides.

Dante is a low-functioning autistic 8-year-old. Ritualistic and repetitive behaviors, such as hand flapping, are typical for an autistic child. So is a dairy-free diet. For many children, it curbs painful and persistent diarrhea and insomnia. Dante speaks few words. Tapping his forehead to my shoulder when I arrive is his way of saying hello. Recently his mother, Adriana, took Dante on a hike. Heading back to the car, Dante broke the silence and said, "Mountains." Adrianna rejoiced. "I thought,' He's looking at the world in this moment the same way that I am.' With someone who doesn't talk, you don't know how he is perceiving the world."

Despite his limitations, Dante's come along way. As a baby, he didn't laugh or interact. Through the work of good-willed strangers and the stubborn advocacy of his parents, Dante is now being educated at a nonpublic school for autistic children. Who knows, his mother asks, where he would be now if it weren't for his specialized education?

Dramatic surge in autism in the past 20 years

In the '90s, a shocking series of reports were released on what had once been considered a mysterious and rare neurological disorder. Just a couple decades ago, autism afflicted 1 in every 10,000 Americans. Now 1 in 166 children are diagnosed with an autism spectrum disorder. More children suffer from autism than childhood cancer.

The national reaction shifted from disbelief to alarm. What was behind the increase? A number of theories surfaced. Some groups claim a direct link between the increase in autism and the mercury contained in a preservative found in many vaccines. Others claim that since autism was added as a special education exceptionality in 1991, it is simply the new chic diagnosis, guaranteeing more services for troubled children. Still others say it is genetic.

But for many parents of autistic children, sleuthing to find the reasons behind their child's disorder was for those with the luxury of time. The more pressing issues were educating and caring for their children.

In California alone, from the 1998-99 school year to 2002-03 school year, the percentage of autistic children enrolled in the public school system went up over 124 percent. Having found that their school systems were unprepared to handle the increase in the number of autistic kids, some parents -- armed with the knowledge that early educational intervention drastically improves a child's chances -- launched their own nonpublic schools, private schools certified by the California Department of Education (CDE) to provide special education. The CDE web site indicates that there are over 1,000 nonpublic schools in California and over 150 serve autistic kids.

A complex developmental disorder, autism is usually detected within the first three years of a child's life. Most autistic children struggle with social interaction, communication and sensory challenges. Soft touch can feel like a sting to an autistic child. Language usually develops slowly, if at all. Autistic children can seem distant and aloof, unaffectionate and uninterested in play.

Ethan Long, the director of The Bay School, a nonpublic school in Santa Cruz, explains the devastating reality of autism. If a plane crashes into a building behind you, Long says, a "typically" developing child will look at the plane and then look at his parent for a reaction: Are we in trouble? What do we do next? Autistic kids, generally, will not. They may not even acknowledge the plane. And even if they do, they most likely will not reference the parent.

"If you have a child with mental retardation, and the parents call his name, the child will likely respond," Long elaborates. "Parents of autistic children don't even get that. It is the most heartbreaking thing. Families are blown up by this disorder."

Early detection and specialized education are crucial

In a pressed flannel shirt, jeans, and sturdy boots, Mike O'Farrell's casual composure hides the demands of daily life. Like many parents of autistic kids, every day Mike coordinates a team of professionals who support his daughter Mia. His self-appointed job is keeping everyone on the same page, passing along "breakthroughs and regressions in real time."

A staunch believer in early detection and immediate education, Mike says the pressure parents feel in their child's early years to do the right thing can be nerve-wracking. "You really feel like you have a small window of opportunity, and you feel like you're playing for all the marbles. You've got to move fast, but you can't stumble either. It is a real shock to feel like you have to operate with that sense of responsibility."

As a baby, Mia did not have typical autistic behavior. But as the father of five children, Mike trusted his instincts. He knew something was wrong. At 2 years and 7 months, she was diagnosed. Mike jumped on the internet.

"If you can't surf the internet, if you don't have some connections -- those families are really behind the eight ball. Most clinical evidence shows that early intervention is the key, that early detection and treatment greatly improves the possible outcomes."

Mike read an article in which Ethan Long, the newly appointed directed of The Bay School, expressed his desire to start an early intervention program. Mike called Long the next day. He said, "You want to be successful with your program; we want to be successful with our daughter Let's make her your poster child."

When Mia started at The Bay School, she spoke 40 to 60 words. Now less than a year later, she speaks well over 200. Most importantly, her dad stresses, Mia spontaneously uses language in different settings and with different people.

"I think an autistic child can outgrow most of the physical evidence of autism and pursue something they will be good at and have a good quality of life. I don't know if autism can be fully cured, but I think it can be controlled," he says.

Most public schools are not prepared for autistic children

The Bay School is located in an outdoor office complex on an unremarkable frontage road on the outskirts of Santa Cruz, a beach town on California's central coast known for its old-fashion boardwalk and liberal university. On the warm foggy morning I visit, a teacher wearing a white fanny pack stained orange with Cheeto smears is working with a 7-year-old. When the child came to the school, he did not speak. "Cheeto" was his first word. Now it is his "promise edible" in an award-based reinforcement system. The child says the sound "ba," which means "up." The teacher gives him a Cheeto and picks him up off a trampoline. He nuzzles his head on her shoulder. Then she encourages him to say tickle. "Tic-kle," she says. "Tickle. Tickle." She waits for him to say the word. He doesn't. And he won't today.

In its ninth year, The Bay School was started by parents who wanted to develop a scientific educational program based on the principles of Applied Behavior Analysis. The Bay School's students come from seven school districts; all pay the tuition of $220 per child per day. The school offers an education almost impossible to provide in a typical public school. There is a one-to-one teacher-student ratio and an emphasis on following the child's motivations. That means if a child wants to go outside, his teacher will follow him there. She will keep teaching "tickle," but she will do it within the context of his desires. Using a graphing system, the school records each child's progress at a very detailed level. If the teachers see that something isn't working, they will make changes to a child's individual program almost immediately.

The Bay School makes unique use of technology. Rooms are set up with one-way mirrors that allow educators to observe parents and children interact without the children knowing. The parent will wear an ear bud and receive guidance and instruction from the educator on the other side of the mirror.

While a typical child may be overwhelmed by the intense attention and rapid-fire directives (tickle, tickle, tickle), Long and his staff says it works for autistic kids. As one young teacher said to me, "We have to contrive millions of situations throughout the day for kids to learn. We're trying to bombard them. They need so many opportunities. They need 400 to 500 opportunities a day to make that connection."

"We would never claim we could cure a child but we can build skills that can make them more like you and I," Long says. "For many years people didn't think we could teach kids with autism, but we can."

Landing at a place like The Bay School usually doesn't happen overnight. Camilla Bixler the mother of an adult autistic son and an advocate and educator in San Francisco, explains that many parents of autistic children find themselves becoming people they never dreamt possible -- driven advocates fighting against a system and a society that can be unforgiving on a good day and cruel the rest of the time.

"They (parents) have to depend on public school and hope public school does well by them. It is very difficult to get extra support for child in public school without advocacy," she says. "Schools are so pressed economically. Where is the incentive for the school to take money and spend it on a needy child?"

"When my son did not have a diagnosis and he was falling apart in front of my eyes, I felt as desperate as I ever have in my life."

That feeling of deep desperation leads many parents to make sacrifices they never dreamt they could make. Nancy Andrieu is one of those parents. She took her oldest son Andrew for a series of tests when he was 2 years old.

"You know it is going to be hard when they say, 'You didn't bring anyone with you?'" she says.

Shocked with the news that Andrew was autistic, Nancy went home and told the woman babysitting her infant Matthew the devastating news. Then came the second shock of the day. The babysitter asked: "Did you ask them about Matthew?" Nancy hadn't considered that both of her boys could be autistic. But she soon learned that they were.

"That's when all hell broke loose," she said.

Nancy and her husband split. She and the boys moved in with her parents on a narrow, curvy street in San Francisco's Outer Mission district. Her mom quit a career she cared deeply about to help Nancy.

Nancy's home is comfortable, decorated with antique collectibles and an Easter egg basket on the kitchen table. Matthew is engaged in one of his favorite activities -- downloading "Lion King" sound clips. But, Nancy says, beneath the homey exterior, the house is a "fortress." Both Andrew and Matthew, like many autistic kids, don't have the same cautionary instincts as typically developing kids. Matthew is fond of heights and will climb to the top of anything -- even the roof -- if left on his own. And when Andrew was 3, Nancy found him in the middle of the street staring down a city bus as it honked and honked. He didn't move.

Even though they are both autistic, Andrew and Matthew are very different. Public school is working for Matthew. But it wasn't working for Andrew. "School is a funny thing. One class will be great. Then you can take a breath for a year. The next year might be different," Nancy says.

As Andrew approached the end of fourth grade, Nancy felt like she couldn't waste any more time. She took a huge risk and enrolled Andy in a nonpublic school, Wings Learning Center. On a nurse's salary, she pays the $5,000 monthly tuition and battles with the school district, hoping that they will agree to pay for his tuition.

"The system is not prepared for these kids," she says. "But they are here."

The relationship between parents and their school districts can be complicated and sometimes hostile. Eric Burkholder, an autism educator who has worked for 11 years in California public and nonpublic schools, explains that children in California are guaranteed a "free and appropriate education."

"Free appropriate education is not necessarily a Cadillac but a Ford," he explains. "Parents don't want free and appropriate. They want free and best."

Burkholder says that while some school districts are only interested in meeting the minimum, others do provide excellent education. Still, quality control is simply easier at smaller and specialized nonpublic schools. He credits parents for excellent advocacy work that has led to more scientific-based programs and has made school districts more accountable. It is more cost-effective, he points out, for the school systems to develop quality services than battle with parents and pay nonpublic school tuition.

Wings Learning Center, where Andrew and Dante attend, is a quaint two-story building in downtown San Mateo, a major suburb south of San Francisco. The school's founder Irma Velasquez describes her son Aaron when he was first diagnosed as "unreachable," the type of child who is happy sitting alone in a corner. Irma and her husband assembled a team of 10-12 professionals, the "A Team," to work with him at home. "We realized we had a school around him. We thought: Why don't we just put a house around that and make a real school?"

An accountant, Irma did not have an education background, but she managed to open Wings in a year's time, in 2001 -- around the same time, she said, three or four other autistic schools were opening in the area. The school quickly outgrew its space, and now, again, the school is moving to an even larger facility.

There is a focus at Wings at getting children used to a "typical" classroom setting; they learn as a group. But within that group, individualized learning is taking place. The main task for one child might be to understand the lesson, another child's task might be to tolerate the noise in classroom, while another child's task might be to regulate himself -- perhaps by keeping his hands from flapping.

"Self-regulation is the first step -- if you can't control your body from twitching and moving around, how can you learn?" Irma asks. "The second most important thing is to communicate. They need to be able to say I'm frustrated, angry, bored, I've had it, I'm hungry, thirsty, or I need to go to the bathroom."

"Kids can learn to live in this world. Once you have autism, you always have autism." But, she says, like a nearsighted person who wears glasses, autistic people can learn to live with their disability.

She accepts now that her son is low-functioning and will never lead a fully independent life, but it wasn't always that way. "I think it is hard. You lose perspective, and you try to make the child become normal and he's not. He's different," she says.

"I still ask him what he does at school today, and he can't answer. Sometimes he says bus and chicken nuggets," she says and laughs.

Adrianna laughs -- a sincere and honest laugh -- often while she speaks. She describes what makes her family work: she and her husband's commitment to not let autism rule their lives.

"You need to laugh. You need to have sex. You need to have a glass of wine," she says. "You have to enjoy your child."

Jennifer Liss is a contributing writer to WireTap Magazine living in San Francisco.

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