Finding the spark
Christien stopped talking at 19 months. The toddler lost the words “mommy,” “daddy,” “bottle” and “I wuv you.” The only word left was “juice.” He demanded juice frequently and screamed when he didn’t get it.
He hated to be hugged. He wouldn’t make eye contact. He ran from other children. He became obsessed with hitting a ball around the yard with a toy golf club. Instead of sleeping at night, he sat in the corner of his room or stood by his parents’ bed staring at them. They would put him in their bed where he would lie awake staring at the ceiling as if in a trance.
Chris Willden and Amanda Oswalt, the boy’s parents, were 20 years old. Christien was their only child. They worried something might be wrong, but this is what they heard from doctors and friends:
“Boys talk late.”
“He’s spoiled.”
“You haven’t made him talk to get what he wants.”
“He’s an only child.”
“He’ll grow out of it.”
Another year went by before they discovered Christien had a mild form of autism. At the discovery, the couple rallied a full-force assault against the disorder. They hit it with everything they had: money, time, energy and love.
Christien’s dad is the stay-at-home parent who coordinates the boy’s schedule. Christien’s mom, an administrative assistant in a law office, is the parent who reads all the latest research.
They have achieved remarkable results for a young couple with few financial resources.
They agreed to share their story in hopes of helping other families identify autism before precious months slip away for more children. They wish they had started earlier.
Autism research
There is no cure, but research shows that early intensive programs can help children with autism make big improvements. Some children, with milder forms of autism, improve so much that they enter regular school without continued special help.
Research also shows autism rates rising. It’s unclear whether that’s due to more awareness of the disorder, a broadening definition of autism, something changing in the environment or a complicated combination of reasons.
Autism disorders are now more common in children than Down syndrome. More common than spina bifida. More common than childhood diabetes. They affect an estimated 1 to 3 children per 500, which means 350 to 1,000 children in Spokane and Kootenai counties. The cost of autism is estimated at $60 billion a year.
According to the diagnostic manual used by specialists, there are five forms of autism. Everything under that umbrella is now commonly called an autism spectrum disorder, or ASD.
The average age of diagnosis is 3 years old, but signs can be seen at 1 year, or perhaps even earlier.
There is no blood test for autism. Diagnosis depends on observation of behavior.
Some children seem to regress, like Christien did, into autistic behavior at age 1 or 2. In some cases, signs can be seen in retrospect. For example, when an expert looks at a home video of an autistic child at a younger age and realizes the child wasn’t responding to his name even then.
People with ASDs are society’s oddballs. They have trouble communicating and interacting socially. They exhibit repetitive behaviors or obsessive interests. Some are extremely sensitive to loud noises, bright lights or uncomfortable clothing. Some take comfort in being wrapped tightly in a blanket.
Some have mental retardation. But children with Asperger’s syndrome – on the milder end of the autism spectrum – can be early readers. A child with Asperger’s can deliver lengthy monologues about a topic of interest, but have difficulty reading the emotions of others and have an intense dislike for changes in routine.
There’s another diagnosis that is a catchall, used when a child doesn’t fit any other autism category. That’s the diagnosis written on Christien’s chart: pervasive developmental disorder, not otherwise specified, or PDD-NOS.
What causes autism? That remains mysterious, although the best thinkers say it’s some blend of genetics and environment. The National Institutes of Health recently awarded a three-year, $3 million grant to Johns Hopkins University to study the genetics of autism. University of California at Davis is one of several centers studying factors such as diet and environmental toxins.
Researchers agree autism affects how the brain processes information. Early intervention is based on the theory that very young brains, their signals jammed by autism, can be reprogrammed while they’re still flexible.
Contrast today’s thinking with the 1950s, when autism was blamed on emotionless “icebox mothers” and children were placed in foster homes or institutions.
Behind the statistics are thousands of families searching for answers. Grass-roots groups, spearheaded by these families, have built enough political muscle to increase federal attention and funding.
Early intervention is now part of a national strategy mapped out at an “Autism Summit” last November in Washington, D.C. National doctors’ groups are encouraging their members to screen babies and toddlers for autism during regular checkups.
The University of Washington is one of eight academic centers conducting coordinated research on autism as part of a national initiative.
UW is helping test a tool doctors can use to screen for autism. It’s called the modified Checklist for Autism in Toddlers, or M-CHAT. To test the tool, researchers are using it to evaluate 200 younger siblings of children already diagnosed with autism. The study will see how well the checklist catches siblings who later exhibit signs of autism themselves. Six Inland Northwest families are participating in the research.
Another UW study will measure the effects of a 30-hour-a-week intensive therapy program for children with autism. The study will involve 48 children. Half will receive the UW treatment program. Half will receive what’s available in the community. The study will compare the results and look at which children improve most within each arm of the study.
“We know some kids have a very dramatic response and other kids can get the same interventions and don’t make as much progress,” said Geraldine Dawson, professor of psychology and director of University of Washington’s Autism Center. “What’s biologically different about those two kids? Are we talking about different disorders?”
Warning signs at preschool
Christien’s parents know a lot about autism now.
But they knew next to nothing about it when consultant Deborah Skalabrin visited Christien’s preschool two years ago as part of an Eastern Washington University outreach program. Skalabrin noticed warning signs. Christien didn’t speak. He didn’t point at out-of-reach things he wanted. He would grab other kids’ toys and throw them over a low wall. He didn’t react to the distress he caused the other children. It was as if those toys needed to be thrown over the wall and he was the one to do it. Over and over again.
Skalabrin videotaped Christien and studied her tapes. She called Oswalt, Christien’s mom, and advised having Christien evaluated for autism.
“The first thing out of my mouth was, ‘Is it something we did?’ ” Oswalt recalls. Skalabrin said it was not their fault and explained the genetic and environmental theories.
With Skalabrin’s guidance, Christien’s parents made drastic changes. First, they altered the boy’s diet, eliminating wheat and milk proteins on the unproven theory that some people with autism cannot digest these proteins. They also stopped all fruit and juice, at Skalabrin’s suggestion. Christien began to talk again and Oswalt heard “mommy” for the first time in more than a year.
Next, they visited a psychologist and received a diagnosis, important for receiving Social Security Supplemental Income. They set up a therapy room in their home, where Skalabrin and two trained college students could work in shifts with Christien 25 to 30 hours a week. They borrowed, from Skalabrin’s equipment lending library, a giant cloth hammock that could be used to calm Christien and motivate him to talk.
He learned to say: “I want to swing.” “I want to swing fast.” “I want up.” “I want down.”
He still had meltdowns, especially if he ate something off his diet. But he was making progress.
Dawn Sidell paints a frightening picture of what can happen to a child who grows up without help. She is executive director of the Northwest Autism Center, a year-old nonprofit organization in Spokane.
She describes a hypothetical child with autism becoming increasingly frustrated and aggressive.
“They hit, bite, scream and hurt other children. As they get older, they can’t be controlled. They get too big and they get isolated from their peers.” At school, she says, they require an adult “who is big and strong enough to restrain them when things get out of hand. They may get sent to an institution and put on medication. It is just so sad, because it does not have to be that way.”
Earlier this year, Christien, now 4 years old, entered a special preschool run by Head Start and Spokane Public Schools. The Collaborative Approach to Preschool Education combines students with developmental delays with typically developing children. Specialists offer physical and occupational therapy. Class sizes are small.
Christien does well in school, the result of practicing at home with his college student helpers in the therapy room. They get him through the yelling and screaming that accompany learning skills that come naturally to most children, like listening to a story or sorting toys by color.
“I’m not trying to make him do anything another 4-year-old wouldn’t love,” Skalabrin tells college student Jacy Jensen as she demonstrates ways to break through Christien’s resistance.
Her methods reflect behaviorist ideas from Ivar Lovaas, professor emeritus at the University of California at Los Angeles; child-centered ideas from Dr. Stanley Greenspan, of George Washington University Medical School; and relationship-based ideas from Steven Gutstein, of the Connections Center in Houston.
To an untrained observer, Skalabrin’s therapy looks simple: A very upbeat, loud and fun-loving adult is engaging a very resistant child in normal play and using every trick in the book. When most people would give up, Skalabrin remains bright and animated. She says it’s like trying to start a fire with wet wood. She keeps playing – pretend grocery store in this case – and keeps inviting Christien into the game, and, suddenly, a spark catches. Perhaps a new set of synapses is firing in Christien’s brain. He stops fighting and is playing, too.
“How much for this?” Skalabrin asks.
“Four blue dollars,” Christien says, pretending to be the grocery clerk.
Growing up
Judi Hill, Christien’s preschool teacher, is starting her 24th year in the school district. She has worked as a speech language pathologist and as a special education teacher.
She says she has never before seen parents as intensely involved in seeking help for their child as Christien’s parents.
“They’ve set everything aside for this child for quite a number of years.” They’re unusual, Hill says, “especially for their age and starting out the way they have.”
Amanda Oswalt and Chris Willden don’t have much money.
“We were both blessed with broke parents,” Willden says.
The couple met in 1998. It was her senior year and his junior year at Deer Park High School. She remembers first seeing him when she was in volleyball practice and he was in football practice.
He was a good-looking kid, new to her, although he’d been at the school before. He floated back and forth between living with his mom in California and his dad in Deer Park. It took him longer to notice her because she was shy. Other girls she hung around with were more talkative. Toward the end of the school year, two of Oswalt’s friends decided she should go to the prom with Willden. One of them gave him her phone number. They started seeing each other, and she got pregnant. They went to prom. She graduated. Willden dropped out.
They decided to make a life together and intended to get married later, when they could afford it.
Willden says now: “I think we both wanted to grow up.”
They figure they spend $1,200 a month out of pocket on expenses related to Christien’s autism. Medicaid, Christien’s health insurance, doesn’t cover his therapy. The monthly $322 from Social Security makes a small dent. On the list of things they’ve put off: Willden going back to work. Oswalt going back to college. Getting married.
“I don’t care about a big wedding,” Oswalt says. “I’d like to have a nice long honeymoon.”
She says this soberly. It’s no joke. Time alone with Willden is rare.
Many children with autism spectrum disorders grow up and live fairly normal lives, although they may always have some social difficulties. Willden and Oswalt believe they can improve Christien’s chances of success.
“We put our grieving on hold,” she says. “We didn’t sit around and wait until we felt better about it.”
To them, it was the obvious thing to do. What’s at stake is their child’s future.