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."

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

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