SAN FRANCISCO, March 9 (UPI) -- More than 60 years after it was first identified, autism remains mystifying and stubbornly difficult to treat.
Because the severity of symptoms and ostensible causes vary widely, there is no single best approach, specialists said. Rather, they recommended an individualized program, with a unique array of specific strategies, be designed for each child.
However, good therapists are hard to find, and the range of services that youngsters with autism require -- from speech training and behavioral therapies to special education and medical treatments -- is often poorly coordinated and ill-defined, doctors said.
As a result, parents often find themselves mired in conflicting advice.
The growing use of alternative therapies -- from strict diets and food supplements to high-dose vitamins and poison-flushing chelation -- arouses as much admiration as admonition, depending on where they seek counsel.
Making the wrong choice can be costly -- both to the child's health, which can suffer serious, even fatal damage, and to the parents' pocketbook, which can be out thousands of dollars for a single unproven "cure."
Even the most accepted and best-studied treatment packages come thinly wrapped in science showing their worth, researchers said.
The prestigious Institute of Medicine of the National Academy of Sciences -- the nation's chief adviser on health matters -- noted in a 2004 research review: "There have not been many studies on treatments for autism."
Doctors, parents and researchers often disagree on the type of therapy most likely to help an autistic youngster grow into an independent adult.
"We have no data on whether any of these treatments help anyone make one friend or get a job; there are no studies showing the results of all these hours of treatment in a real-life setting," said Texas psychologist and autism specialist Steven Gutstein.
Searches for more definitive answers are under way. New options are in various stages of readiness -- from ideas on the drawing board to concepts poised for the lab-to-clinic crossing. However, moms and dads put off for years by the halting wheels of scientific progress have run out of patience.
"As parents, we're not going to say, 'We'll wait for 20 years for the research to come out'; as parents, we'll say, 'I'm going to use everything that's out there,'" said Dr. Judith Miles, Thompson Endowed Chair of Child Health and Pathology at the University of Missouri, Columbia.
"So, kids are getting all kinds of treatments -- vitamins, chelation, speech therapy, fatty acids ... gluten-free diet, casein-free diet and 30 hours a week of applied behavior analysis."
Not only are most of those methods unproven, some may even cause harm, and the mix muddies doctors' attempts to clarify what works best for whom, physicians said.
"We only know a little bit about what therapies really do work, and we don't know anything about all of the alternative therapies, but I have parents who have got their kids on ... these very labor-intensive diets, on vitamins that they believe are ... detoxifying their baby's systems, and they're frightening," said Boston pediatrician Dr. Eileen Costello.
"And, you know, some of these kids aren't growing because they're on diets with so little protein. So, there's a lot going on out there that we need to get a handle on."
About the only common handle parents, doctors, researchers and policymakers have on what works turns on the general agreement that the best chance for autistic children to develop social and language skills is to enroll them in early, intensive behavioral therapy in a highly structured setting.
Federal guidelines recommend a program built on the child's interests, engaging his attention in carefully designed activities, offering a predictable schedule, teaching tasks as a series of simple steps, reinforcing desired behavior and involving parents alongside teachers and therapists.
A 2001 report by the National Research Council advised parents to make sure their child is working with a well-trained, experienced staff and has access to typically developing peers for a bit of socializing.
Moms and dads trying to meet the needs of an autistic youngster face a titanic task.
"Parents described round-the-clock efforts to care for their child, the difficulty of finding knowledgeable and sympathetic healthcare providers, the challenges in finding high-quality information and the frustrations of seeing their child change from being active and engaged to being aloof and nonresponsive," the IOM noted in its report.
Although it has failed to keep up with the exploding numbers of children diagnosed with autism, the healthcare system at least appears to be heading in the right direction, specialists said.
"When I started working with the program 10 years ago ... there was just nothing out there for young children with autism," recalled Christine Caselles, director of Community Services for Autistic Adults and Children, a Rockville, Md., non-profit support center founded by parents in 1979.
(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: Timing is everything.
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