Screening Is Believing
A lack of attentiveness, a failure to babble or relate to sound, or perhaps an overreaction to certain sounds or an indifference to toys: These and other traits are often the first signals parents have that something is amiss with their newborn or toddler. And typically, it is parents who first bring their concerns to the attention of a pediatrician. Not so long ago, says Siegel, most parents would have been told to come back in six months. "Most pediatricians are much more alert to the signs of autism now," says Siegel, thanks to a screening test that she developed and that a company has now purchased to distribute nationwide. The questionnaire has three variations, designed to help primary care providers, developmental clinic staff and autism specialists pinpoint the particular deficits each child displays. Questions range from, "Did your baby ever do one thing over and over for so long that you were surprised a baby that age could concentrate so well?" to "Was it hard to get your baby to smile back at you?" Additional material offers brief explanations and follow-up questions for providers, questions that are designed to separate the developmentally delayed from the disabled, and the disabled from the more specifically autistic. If the final score is 5 or higher, Siegel counsels early intervention, using an autistic learning disabilities model that, again, she pioneered after decades of research. She also advises on what she calls the parental mourning process, which starts with the parents' understandable reaction to a shattering diagnosis: denial. "Parents don't want to believe that their child is retarded, disabled or in any way impaired, so they usually go on the Internet and begin to research things like mad." In their anguish, Siegel explains, some fall prey to charlatans or lose sight of the differences between correlation and cause. One shining example is the enduring controversy over whether the mercury preservative used in the vaccine for measles, mumps and rubella is responsible for autism. It is an easy leap to make. Many children who show signs of the disorder do so between the ages of 2 and 3, when they also are being vaccinated. Several major studies have now disproved the connection, but because of the correlation between vaccination and an autism diagnosis, some parents have not been dissuaded. Siegel understands their frustration, but prefers to confront the disorder where it lives -- in the minds of children who see the world differently and whose skewed experiences of it create a parallel reality that isolates them from their family and the rest of society. Siegel's charge is to try to understand the implications of their distorted perception, determine what she calls the "matrix of their abilities and disabilities" and then use that information to craft practical methods or "work-arounds" that enable parents to teach and communicate. While simple to state, the practice is full of devilish details. "How do you un-ring a bell?" asks Siegel. "That is our challenge as therapists, since we need to be able to distinguish between the primary deficit and the accommodation to it." Worse, children with autism spectrum disorder are not all the same. Some are more anxious, others more obsessive. Still others have more problems with language or tend toward that benign obliviousness that stems from an inner impulse to please only themselves. But, Siegel believes many can still learn as long as trained therapists intervene early enough with multisensory strategies. For example, those with auditory problems who don't respond to words -- a deficiency that jibes with the Merzenich-Rubenstein model -- still seem capable of learning if the words are accompanied by pictures and objects, a cue to visual memory regions of the brain that may be wired correctly. Indeed, Siegel's books on the subject are rich with instructional techniques and explanations, including tips on nonverbal communication, interactive play, increasing food choices and adolescent socialization. This spring, Siegel and her colleagues will open a two-week intervention training program for parents and their autistic children at a refurbished home in San Francisco. Called Jumpstart, its goal is to train parents in ways that will enrich their particular child's environment. "Since most learning takes place in the home, the Jumpstart House will replicate this environment," Siegel explains. The hope, too, is that parents will hone strategies that entice their children back from autism's alternate universe. Convergence and EmergenceIn the end, the differences between Siegel's practical methods, steeped in experience, and Merzenich and Rubenstein's theory, drenched in neurotransmitters and genetic interplay, seem destined to dissolve as research in both areas advances. Future progress is, of course, small solace to the parents and children who live daily with the consequences of a disordered brain. Still, convergence is a hopeful turn. The brain is, after all, a living sculpture, a complex of integrated systems that interpret the physical world and that are, in turn, shaped and refined by this interaction. True, we are all individual interpreters, diverse in countless ways. Yet for all our diversity, shared sensory experience makes us part of the same human tribe. Through no fault of their own, autistic children have been separated from this tribe. The shared efforts of UCSF researchers may one day bring them back. |
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