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Photography by Charlie Leight/Genesis

Intense isolation

Autism | The Centers for Disease Control and Prevention estimates that 1 in 85 U.S. children is born with autism, Asperger's syndrome, or a related disorder. Boys are five times more likely to be affected than girls. The most severe form is autism itself, one that places extreme pressures on parents

Issue: "Who will vote?," April 21, 2012

TEMPE, Ariz.-Relentless.

Marcus LeDeaux, 14, walks with a slight limp. A helmet sits askew on his head, concealing a bandage on his forehead but not the wound next to his ear. His lively eyes look everywhere but at you. He wears gloves that expose his finger tips. His mouth is curved into a smile that suggests a secret.

Despite his limp, Marcus is quick. In three minutes he does the following: Sits on his mother's lap. Paws through a bin of plastic sea creatures. Picks up an orca. Puts it in his mouth. Sniffs. Bites off a hunk of fin. Sniffs. Grabs a pair of scissors. Sits on his mother's lap. Taps at a computer keyboard. Explores a take-out box of food. Eats something. Roots through a drawer. Rifles through the bin of plastic toys. Pulls a book off the counter. Sniffs it.

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Marcus is autistic. He also has a mild case of cerebral palsy.

I met Lisa, his mom, at Love Child, a children's resale shop she bought several years ago, after working there for more than a decade. Located next to the Trader Joe's in Tempe, the store brims with baby equipment, racks of gently used clothes, and shelves loaded with toys and books. In a moment of quiet before Marcus and his dad, Mark, arrive, Lisa sorts and prices clothes while describing how she learned that Marcus had autism.

They received the cerebral palsy diagnosis for Marcus, their third child, when he was 6 months old. When Lisa and Mark took him for evaluation to see if he'd qualify for government-paid services, the psychologist (and later a neurologist) diagnosed his autism. He was only a year old-much younger than most children who receive that diagnosis. After a few months of bureaucratic delay, Marcus began to receive crucial early intervention. The CP diagnosis has made it easier for Marcus to get services. He has long-term care, which has paid for five surgeries. It pays for his helmets.

Marcus also receives therapy, but after seven years of speech therapy still doesn't talk. He gestures, grunts, and squeals to get what he wants. He understands what people around him are saying, but doesn't appear to be paying attention. When he's happy, sad, or overstimulated, he'll head butt or pinch.

Sometimes he bites his fingers or hits himself repeatedly on the head-hence the gloves and helmet. He takes his helmet off, revealing short brown hair and a bandage covering a self-inflicted wound, before quickly pulling it back on. It gives him a feeling of security, his mother says. Although some people with autism shut themselves off from sensory experiences, Marcus drinks them in. "He's trapped in sensory land," his mother explains. "He has to smell everything."

I don't really understand what that means until I watch Marcus in action. He's constantly in motion. At one point he draws near to me as though he's going to kiss my cheek, but he moves past without making contact, sniffing me in passing. Even when he appears to snuggle with his mother, he's not really connecting. He's touching, feeling, and smelling to satisfy his appetite for sensory experiences. Lisa waves a finger three inches from his nose and mouth, causing explosive laughter. His brother calls it a wireless tickle.

For his first seven years, Marcus was so hyper he couldn't sleep. "He was wound for sound," his mother says. His parents, along with his grandmother, took shifts to get through the night. When he was seven, they accidentally discovered a cure for his sleeplessness. Lisa put her older son's ADD medication on the kitchen counter. Thinking it was candy, Marcus grabbed it and put it in his mouth before his brother, who was standing right there, could pick it up. He fell asleep. Now he takes medication and sleeps better.

The incident with the medicine turned out well, but it highlights what can happen when Marcus is unattended even for a second: "He ate the guts [foam rubber] out of the couch. ... He would try to eat bird poop. He would try to eat dead snails. ... He dug in his diaper and smeared feces everywhere." He doesn't do those things as much anymore, but recently he did open a drawer at Love Child and drink from a bottle of aloe vera lotion.

Relentless.

Few people have it as hard as Marcus, and few people display such joy. It's one of many paradoxes. Lisa calls him her greatest blessing and her greatest curse. Life with him is exhausting. She can't take him to church or on vacation. The isolation can be intense. "And the despair, so much despair. If you are ever alone and quiet, you cry and cry. ... There isn't anything anyone can do."

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