Ten-year-old Cameron Castillo never liked toys. It was the first
thing about his childhood that gave his mother, Marie, pause.
Instead of playing with Tonka trucks, he clung to ridged bottles
of Vaseline Intensive Care lotion. Birthday presents went unopened
and were donated to Goodwill. Then, just before his second birthday,
he stopped looking his parents in the eye.
"He just slipped away," says Marie, 42.
When he made grunting noises instead of saying words, Marie and
her husband,
Fred, thought ear infections from his infancy had caused a speech
impediment in their youngest of three children. But after they took
him to a speech pathologist and an ear institute, Cameron's
condition was diagnosed as autism,
a developmental disorder characterized by communication
difficulties and abnormal social interactions, a few days before his
third birthday.
It was 1996, and most people, including the Castillo family,
associated autism with Dustin Hoffman's character in "Rain Man." But
nothing about that movie -- or any other -- could prepare them for
life with an autistic child.
Cameron had raging tantrums 10 times a day. He'd take off his
clothes, scream "like someone was killing him," each time, Marie
recalls. He'd fall or cut himself without anyone knowing until they
saw blood trickling down his face. "One minute to the next, we
weren't sure what would happen or what would get thrown at us," she
said. "It was very stressful for our whole family."
Fred, a general contractor who often works a lot from his home,
does not usually speak unless he has something to say. Much of what
he talks about revolves around finding a cure for his son. His
19-year-old daughter, Danielle,
is away at Cabrillo College in Santa Cruz -- but when she's home,
she defends Cameron and her family from strangers' disapproving
looks and rude comments. Most think Cameron is just a regular kid
behaving badly in public.
The Castillos' middle child, Lexi, 12, is a tomboy who excels at
track and has aspirations to become a neurosurgeon. She says her
classmates love "Cammy, " as she calls him, and they frequently
write impassioned speeches for their classes about autism.
A poem Lexi wrote, laminated and tacked on her bedroom wall, sums
up a lot of how she feels about her brother. "People laugh at him
every day, but Cameron will forgive them anyway," it reads.
"Cameron, he's a very loving heart, but even though autism is
keeping him one step away from every day, he's a sweetheart."
Marie, a Mary Higgins Clark fan who loves mysteries, is sometimes
overwhelmed by her puzzling son. The stay-at-home mother says that
although he didn't start to speak until five years ago -- his
favorite expressions are "pogo stick" and "play basketball" -- now
he's learning to spell his name. Although his progress has been
slow, she says, it's still progress.
His parents have learned more about the disease and how to fight
it by joining Cure Autism Now and educating themselves about their
rights as the parents of a disabled child. They give $10,000 to the
nonprofit each year and sport a blue CAN sticker on the window of
their truck.
But no matter how involved they are, they are not sure what to
believe about the causes of autism. Fred wonders whether autism is
caused by environmental factors. There are so many theories to
consider, but not enough answers.
"We would love to see the Centers for Disease Control, the
National Institutes of Health and the government quit dismissing
this autism epidemic," Fred says. "These kids are being kidnapped
and leaving behind a shell. We can't keep putting Band-Aids on this.
It's a national emergency."
CENTER OF ATTENTION
At their five-bedroom home in Redwood City, a large American flag
billows in the slight breeze. Few signs of life are evident in this
cozy community of beige homes, other than Cameron playing basketball
with his therapist. Inside the home, a slick baby grand piano sits
in the corner of their living room and a soon-to-be discarded
aquarium stands neglected by the front door.
Marie picks up Cameron's fleece and backpack, which he left at
the bottom of the staircase. She makes it seem so easy to live a
normal life -- but there are things that get to her. Neighbors and
strangers see a normal-looking child whose parents let him run wild.
When he plays basketball outside the house, drivers complain.
Marie shrugs it off. "They've told us, 'Kids shouldn't be out in
the street. ' But we deal with people's reactions all the time."
The biases and slights are not personal, so the Castillos have
learned to be patient. "Sometimes, people tell us that we should
keep him indoors or not leave the house. We tell them, 'This is
America.' "
It's a hot summer morning, and Marie races Cameron to the
family's brown Tahoe truck after a tennis lesson and lightheartedly
complains about being winded. Cameron, who is hardly ever tired,
loves every bit of it.
The tennis lessons are Marie's break from her round-the-clock
duties. If she had more free time, she says, she would take up golf.
But there is no time to take a Saturday off with two children in the
house.
She's up by 6:30 a.m., after having bathed Cameron at night and
ushered him to the bathroom intermittently throughout the night so
he doesn't wet the bed.
TWENTY THERAPISTS
During the academic year, Cameron attends school in Millbrae and
splits his time between special-education and regular classes. By
midafternoon, Cameron is in his therapy room with one of the 20
therapists he's had during the years.
The Castillos have tried dozens of treatments for him -- from low
doses of Prozac to help with his concentration to vitamins and
vaccinations. The costs have been as much as $13,000 annually, not
including medical bills. MediCal and insurance foot some of the
costs, but not all.
What has worked best for Cameron is applied behavioral analysis
therapy, a method also known as Lovaas, which structures the
environment for autistic children and rewards them for improving.
The major challenge seems to be getting him to sit still for more
than a few minutes at a time.
In his blue room, CDs of SAMONAS -- a sound therapy for children
with speech and language problems -- are stacked atop the bookcase.
Beyond a knotted blue spandex swing hanging in the middle of the
room is a small table where a thick binder of worksheets lies among
puzzles.
On a recent day, when his therapist came to the house, they
stayed in the room for about 20 minutes before Cameron needed a
break. She took him outside to shoot hoops instead of struggling
with the worksheets.
When Marie is home alone with Cameron, she has a hard time
getting him to simply sit down and watch a tape of "Goofy's Extreme
Sports."
"He never just sits down and watches the movie, but I have to do
something to get the laundry done," Marie says. "He'll be running
around the house . . . unless it's his favorite part."
On a recent afternoon in Foster City, the family is having coffee
with a friend, soaking in the bright sun outside of Starbucks.
Cameron is playing with an empty coffee cup and saying "pogo stick"
with a bright smile.
His progress gives the family reason to smile with him. But they
worry about his future.
"Our biggest fear is that he'll grow to be 40 and we can't pass
him onto his sisters and we won't institutionalize him. . . ." Her
voice trails off. "He doesn't like to be alone for very long. When
he is, he's like a toddler. He loves the smell of Windex, and if he
isn't stopped, he'll eat soap."
When Cameron's condition was diagnosed, doctors gave Marie and
Fred a list of things he'd never be able to do -- like drive a car
or get married. As they have watched his development ebb and flow,
the Castillos have kept their hopes for his eventual independence
closer to their hearts than the threat of his slipping further away.
Faith in the possibilities for his future is really all they have.
E-mail Joshunda Sanders at
jsanders@sfchronicle.com.