Journey along the spectrum

When Christina and Jeff Williams moved from Virginia to California, they had just begun their journey of discovery as parents of a child with autism. Their son, Zachary, was 5 at the time; he’d been diagnosed with an autism spectrum disorder (ASD) about two years earlier.

“We were completely in the shallow end as far as trying to walk across the river,” Christina said. “We were really fortunate to come to Chico, because there are a lot of programs and services for children on the spectrum. If I lived in the surrounding areas, I’d probably relocate here.”

Autism was a new frontier for the family. Jeff and Christina both served in the Navy, and while Jeff continued his career in aviation, Christina studied psychology and worked part time in daycare and teen facilities. Through education and experience, she absorbed so much about developmental disorders that she got hired as a parent consultant at Rowell Family Empowerment—a North State nonprofit agency serving people with diverse abilities, from newborns to age 26.

Zachary is now 12. He goes to school and has made great leaps with his verbal abilities and social interactions. He has a close relationship with his sister and lone sibling, Madison, who’s 14 and doesn’t have autism.

“We’re blessed as a family,” Christina said, “because Zachary having an older sister was very helpful to him. It gave him someone to model, and she’s also very protective of him and very compassionate.”

To continue the progress made in Virginia, the Williamses contacted the Far Northern Regional Center. Regional centers are public agencies, mandated by state law, for individuals with developmental disabilities. Far Northern arranged therapists for Zachary and referred the family to Rowell Family Empowerment, where they’ve received additional support and services.

“It’s been a slow journey,” Christina said, “and it’s an ongoing thing. My analogy is the door used to be shut, locked, bolted altogether; slowly and gently, we’ve gotten past each lock to crack open the door.”

Plenty of families find themselves in the same situation. The latest numbers from the Centers for Disease Control and Prevention indicate that 1 child in 68 has an autism spectrum disorder—1 in 42 boys and 1 in 189 girls. The overall prevalence represents a 30 percent increase over a two-year period.

The CDC numbers come with a caveat, however: They’re from a 2010 study of 8-year-olds in select communities. Thus, they provide just a snapshot indicator of autism rates.

“Remember that this data is for kids born in 2002—it’s scary to think what the numbers are now,” said Dr. Lisa Benaron, Far Northern medical director.

The autism spectrum encompasses a range of developmental disabilities that affect socialization, communication and behavior. The rapid rise raises a big question: Do more people have autism, or are more people getting diagnosed?

Benaron and Dr. Eric Neal, a pediatrician at Oroville Hospital, say it’s both.

“For whatever reason, it seems that autism is on the rise,” Neal said, “but also there’s more awareness, so we’re screening for it more. It’s like if you take X-rays of every patient with a cough, you’re going to see more pneumonias than if you don’t.”

Said Benaron: “The criteria haven’t changed for the [CDC] monitoring system, so that’s pretty good proof that the numbers are increasing. What most people say is maybe 30 percent of the increase is due to increased recognition … but we can’t explain away the entire trend.”

Diagnostic techniques have received special attention from doctors and scientists. Stanford University, for instance, has examined the effectiveness of home videos in identifying autism. Meanwhile, Children’s National Health System researchers have found biomarkers that may indicate ASD in infants as young as 9 months.

Breakthroughs such as these could prove significant, because the earlier a child gets diagnosed, the earlier professionals can help.

“We talk about missed opportunities to learn,” Benaron said. “Most children learn from interacting with their parents. If they’re not all that interested in interacting with their parents, they are missing chances to absorb the information that the parents are modeling. And it’s more than that: There are probably important brain connections that aren’t getting made at the right times.

“That’s the reason to get in there early, to try to shift the child’s attention away from objects and their inner world and back to the interactive social world.”

Parents, of course, have the best chance of detecting autism early. Neal and Benaron say mothers and fathers often get a visceral sense that something is different about their child. There are tangible signs, too, including decreased eye contact, more interest in objects than people, unusual play with objects and repetitive play that’s entertaining for long periods of time. (Older kids may have intense fascinations with specific topics or activities, decreased interest in fitting in and lack of interest in close friendships.)

“With all of the media coverage over the past 10 years, people are much more in tune with autism,” said Neal, who’s been a pediatrician 18 years. “When I first started practicing, I don’t think I had many parents come in with autism concerns for their children, whereas now that’s the main reason why many come to see me.”

Williams acknowledges it was “pretty intense and devastating” when she and Jeff first learned their son has autism, but a family shouldn’t hesitate to contact their pediatrician, Rowell or Far Northern, or reach out to other parents.

“Some parents are very fearful of labels or the unknown,” she said, “but if you think something is going on, it never hurts to find out more.”