ASTAR gives families something to wish on

When he was about 18 months old, Dante Camacho-Hendrickson suffered a febrile seizure.

The fever-induced convulsions left the boy hospitalized for a week. Once a talkative child who was starting potty-training, Dante came home different from the healthy boy his mother had known.

He sat in a corner, rocking, "vacant," Charity Camacho said. Her heart broke.

That was in 2000. Except for a few rare occasions, he hasn't talked since. He can scream. He makes "eeeeeeeeeee" sounds, and hums. When agitated, he runs around and flaps his arms. At age 9, he wears diapers. The stress of the situation took its toll on Camacho's marriage, and the couple divorced.

Four years ago, Dante received a formal diagnosis of severe autism.

Dante's preschool teacher in Snohomish had suggested that the family visit a clinic in Seattle called ASTAR, which stands for Autism Spectrum Treatment And Research. It is one of 13 organizations this year to receive aid from The Seattle Times Fund For The Needy. Last year, ASTAR received about $12,000.

ASTAR was founded in 2003 by Dr. Gary Stobbe, a neurologist, and his wife, Mari, who runs the center's day-to-day operations. The physician also works in a private practice.

"I was hearing the same story over and over again from families, asking why there aren't more services available, why there isn't a place we can go to help us with decision-making," he said.

Stobbe decided to do something about it.

All 670 families seen by the center have received some subsidized services, which include setting up a lifetime-treatment plan that ranges from dietary needs to speech and occupational therapy.

According to a study authored by Michael Ganz, an assistant professor at the Harvard School of Public Health, it can cost about $3.2 million to provide lifelong care for an autistic person.

Little was known about autism until the 1990s, although it was first described in 1943, according to the National Institute of Child Health and Human Development (NICHD). According to the agency, boys are three to four times more likely to have autism than girls.

There is no simple "test" for autism. Instead, the NICHD lists "red-flag" behaviors -- a child who doesn't respond to his or her name, or doesn't point or wave -- for parents and caregivers to look for.

Camacho believes there was a connection between Dante's immunizations and the onset of autism. He suffered the seizure, Camacho said, as she was driving him home from receiving vaccinations for MMR (measles, mumps and rubella) and DPT (diphtheria, pertussis and tetanus).

But according to the NICHD, "there is no conclusive scientific evidence" that vaccines cause autism.

Today, Dante is enrolled in a special-needs third-grade class in the Snohomish School District. But outside of school, he has to be watched. The days are draining for Camacho, 29, who has remarried and, in addition to Dante, has three children.

"You sleep with one eye open," Camacho said. "You don't have any respite."

Where there once was a doorknob on the door to Dante's bedroom, there now is a hole. The doorknob was taken out after the boy accidentally locked himself in several times.

On the wall by Dante's bed is a spot where paint is missing; he tore it off and ate some of it.

Dante also demands a very structured life. For example, when he wears a coat, he always wants the hood over his head. If his shoes are off, so are his socks.

If not, Camacho said, "he screams -- not the kind of scream you hear from any normal little kid. It is blood-curdling."

Through ASTAR, Camacho works with physical therapists who can teach what, to Dante, are overwhelming tasks such as throwing or kicking a ball.

Gary Stobbe has prescribed medication to help the boy with his self-injuring behaviors, as well as his sleep. Unmedicated, Dante would sleep only fitfully, perhaps for 45 minutes to an hour, and then literally be up for two days until he fell asleep from exhaustion.

Camacho continually modifies Dante's diet to fit his needs. He judges foods by texture and is specific about what he will eat. Near the kitchen, the family has posted cut-out pictures of foods, which Dante can point to when he's hungry.

Right now, he likes grilled chicken or steak, but when it's served, nothing else can touch it. Camacho gets Dante to eat bananas by mashing them up with peanut butter. She picked up the strategy from a dietitian found through ASTAR.

And so these days, Camacho allows herself hope.

"I really hope that someday, maybe, he can go to college. I'd be really excited if he were able to have a family," she said.

This past year, Camacho has had two surgeries for uterine cancer and is scheduled for reconstructive surgery in February. It has been her family -- her parents, her mother-in-law, two of her sisters and their husbands and children -- that helped take care of Dante during her surgeries.

Camacho is fighting her cancer, and she said, "Whatever Dante needs, my family will fight for."

Hope is the ready smile that Camacho has when Dante runs up to her and snuggles with her.

"I'd love to hear him talk again, hear him say again, 'Mommy,' " she said. "I'd cry."

Erik Lacitis: 206-464-2237 or elacitis@seattletimes.com