SAN FRANCISCO, March 1 (UPI) -- In a good-news, bad-news mix for autism, researchers report early diagnosis of the neurodevelopmental disorder has been shown to be effective -- yet elusive.
Despite a growing body of scientific evidence pointing to the benefits of early detection, government scientists estimate only about half of children with autism are diagnosed before kindergarten, with most of these identified between the ages of 2 and 4.
Although that marks an improvement over previous years, it's still too late for the undiagnosed half to get the best shot at reaping maximum benefits from treatment, most experts agree.
"We know that it's never too late to intervene with children with autism, but we also know that there's this critical window of opportunity that you keep hearing about," said Laurie Stephens, director of the Autism Spectrum Disorders Program at The Help Group in Los Angeles, a non-profit organization that serves 500 children with special needs.
"The age has kind of been set between 0 and 5 ... when children's brains still have much neuroplasticity," she told an autism conference sponsored by the Brookings Institution in Washington.
"You're sort of able to get in there with your interventions and really make a critical difference in terms of brain development, not just in terms of teaching the child a script of what to do, but really making a difference in their neurophysiology and their neuropsychology."
Although a 10-to-15-minute checklist of behaviors already exists that could help detect autism in children as young as 18 months, there is haphazard use of the tool in the absence of any mandate for early screening for developmental disability, Stephens said.
As is often the case, parents are ahead of professionals.
Following an education campaign to inform physicians about symptoms and urge families to reject a doctor's "wait-and-see" advice, kicked off by the Centers for Disease Control and Prevention in February 2005, the rate of moms and dads familiar with autism's early-warning signs rose from 37 percent to 50 percent, said Dr. Jose Cordero, director of the National Center on Birth Defects and Developmental Disabilities, part of the CDC.
The downside has been a backlog of families seeking diagnostic evaluations earlier -- requests many physicians and insurers deny because of the cost of such assessments, lack of trained therapists and continued doubt over the reliability of identifying the disorder before age 3 or 4, scientists said.
Many parents experience delays in learning their children's fate because pediatricians often dismiss their concerns as unwarranted, doctors said.
Sometimes, doctors blame the usually benign, typically self-correcting "colic" for the arching, screaming, miserable, hard-to-console, impossible-to-feed baby, they said.
"As pediatricians, we say, 'In 12 weeks, it's going to go away,'" said Dr. Eileen Costello, children's physician at the Boston University School of Medicine, co-author of "Quirky Kids,"(Random House, 2003) and mother of a teenage son with a mild case of an autism spectrum disorder called Asperger's syndrome.
"Well, when they're back at 4 and 5 and 6 months, and the kid is still arching and still impossible to console, impossible to have fun with, well, it's not colic anymore. It's something else," she added.
As many as four years may elapse between a parent's first expression of worry and a child's official diagnosis, doctors said.
"It's four years that we've lost of that child's life," Stephens said. "And it's four years that could effectively have been changed by a 10-minute screening tool, and that just cannot continue to happen."
In hopes of shaving off some of the wait time, Cordero called for a better dialogue between parents and practitioners.
"For healthcare providers, we have a message that's pretty direct about autism," he said. "And the message is: The 4-year-old with autism was once a 3-year-old with autism, which was once a 2-year-old with autism."
As the first medical professionals to observe the baby and to obtain the services he may require, pediatricians have a special obligation to hear that call, doctors agreed.
"A typically developing child comes to my office 11 times within the first two years of life. That's a lot of opportunities to get a look at a baby and a baby's ability to interact," Costello said.
Unless a doctor requests a multidisciplinary evaluation or a neuropsych test, possible autism remains undetected, Costello said.
"And that is the reason why my profession is so important in trying to meet the needs of all of these kids, and as parents told us over and over again, we're not doing a very good job."
(Note: In this multi-part installment, based on dozens of reports, conferences and interviews, Ped Med is keeping an eye on autism, taking a backward glance at its history and surrounding controversies, facing facts revealed by research and looking forward to treatment enhancements and expansions. Wasowicz is the author of the new book, "Suffer the Child: How the Healthcare System Is Failing Our Future," published by Capital Books.)
Next: Autism tough to treat.
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