For years, Dr. Michael Chez has treated children with autism. And for years, he has watched them grow toward an uncertain future.
He describes a glaring gap that spans everything from social services to medical care as autistic children become adults.
"There's really no organized structure for what you do with adults with autism," Chez said. "We don't know a lot about how these people age.
"Will they have more diabetes, heart disease, ulcers?"
And what long-term side effects might they suffer from medications they've taken since early childhood?
Hoping to fill treatment and research gaps, Chez and colleagues at the Sutter Neuroscience Institute are launching what may be the region's first clinic for adults with autism.
"We're very excited to hear they have the idea. It's really needed," said Dr. Ron Huff, director of clinical and intake services at the Alta California Regional Center, which helps funnel care to people with developmental disabilities in 10 counties, including Sacramento.
The face of autism, a neurodevelopmental disorder that interferes with communication and social skills, has long been a face of youth.
With autism diagnoses increasing, researchers have focused on trying to find the cause, and trying to figure out which therapies can best help young children while their brains are still developing.
Treatment has been aimed at teaching children to understand language better, grasp facial expressions or pick up on other people's emotions.
Adult autism has drawn little attention partly because it once was scarce.
When Chez was in medical school in the 1980s, he was taught to expect autism in about one child in 10,000. Now it's about one in 150.
That means that the majority of people with autism today haven't grown up yet and little is known about what their lives will be like when they do.
"Most of the people with autism in California are 3 to 18 years old," Huff said. "In another five, another 10, another 15 years, all those kids are going to be adults or well into adulthood."
There is relatively little in medical journals about the needs of autistic adults, said Chez, medical director of pediatric neurology at the Sutter Neuroscience Institute.
Services can be scanty. There's "a really big, crying, unmet need" for vocational programs, said Marjorie Solomon, a psychologist and University of California, Davis, professor. Solomon is studying learning in adults with autism.
"With young adults and adults, you want them to be able to live independently if possible; you want them to have jobs if possible," Solomon said.
As many as half the people with autism also have some level of mental retardation. But there is speculation the numbers may be skewed because IQ tests can rely heavily on language skills. And even highly intelligent people with autism-related disorders can struggle at work because they miss critical social cues, Solomon said.
"Think about the vicissitudes of office politics. If you're not good at picking that up, you're in trouble," she said.
Susan Bacalman, a clinical social worker who runs a support group for autistic adults at UC Davis' MIND Institute in Sacramento, said the need for support is so great that "my group is a drop in the bucket."
Bacalman regularly gets calls from people looking for psychiatrists and therapists familiar with autism or Asperger syndrome a form of autism in which linguistic and cognitive development are normal but children lack social and communications skills.
"I haven't found anybody who specializes in this area," she said, so the new clinic could be a "fabulous" resource.
The Sutter Transition for Autism and Neurodevelopmental Disorders (STAND) Clinic will start modestly, according to Chez and Dr. Shawn Kile, a psychiatrist and neurologist who will help direct the clinic.
In May, it will be held once a month at an office in Sutter's Cancer Center at 2800 L St. Doctors hope to work up quickly to twice a month, and then perhaps more.
Call The Bee's Carrie Peyton Dahlberg, (916) 321-1086.





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