Teens and young adults get recreational outings and can participate in weekly social skills groups that deal with topics like flirting and dating, making small talk, and preparing for the workforce. "We really tried to make this sort of a one-stop shop," Bauman says. Because most people with autism are affected their entire lives, many parents and experts say that providing transitional services for teenagers and adults is critical.
"One person led us to another led us to another," says Joellyn Boggess, of Paducah, Ky., whose daughter Erin, 9, has been receiving coordinated care at Vanderbilt University Medical Center in Nashville, also an ATN facility, even though it's about 140 miles from home. One sleep study led to supplements of melatonin, a naturally occurring hormone that regulates the body's circadian rhythms. Because Erin was having some staring spells, a neurologist investigated and found complex partial epilepsy; medication has since improved her attentiveness. A GI specialist suggested a high-fiber diet and medication. This summer, the family is moving to Nashville, where Boggess's husband, a social worker, was able to find a job at a Veterans Affairs hospital.
Imaging inroads. Eventually, researchers hope that imaging brains of people with autism and their siblings might help identify biomarkers that predict which children will be affected and even where on the spectrum they might fall. (Brothers and sisters of individuals with autism have much higher than average odds, about 1 in 5, of developing the disorder.) In people with autism, nerve cells connecting regions of the brain appear to develop and function differently. "It's the connections that really make it all work," says Helen Tager-Flusberg, a professor of psychology at Boston University and president of the International Society for Autism Research. A neuroimaging study of infants at risk for autism released in February revealed differences in the development of white matter, across which signals in the brain are transmitted, in those who went on to develop autism and those who did not. Some of the differences were visible even at 6 months of age.
By pinpointing the ways in which the brain works differently, researchers can also try to develop drug treatments that address the core features of autism, says Robert Schultz, coauthor of the neuroimaging study and director of the Center for Autism Research at the Children's Hospital of Philadelphia, also an ATN site. Currently, there are no drugs available that do so. But a number of medications show promise against poor social functioning and communication. Preliminary results from Yale have indicated that giving supplements of the social bonding hormone oxytocin, for instance, boosts activity in parts of the brain related to social interaction. And several drug treatments for one known genetic cause of autism, Fragile X syndrome, are now entering clinical trials and could one day treat autism more broadly. Seaside Therapeutics, in Cambridge, Mass., has developed a compound that seeks to regulate a brain cell pathway that appears out of balance in Fragile X and leads to socially avoidant behaviors. In a test of 27 socially avoidant individuals with Fragile X, more than 40 percent demonstrated significant improvement in social behavior while on Seaside's drug versus about 7 percent on a placebo, says Paul Wang, a developmental pediatrician and vice president of clinical development at Seaside. "We got stories of kids who now hung out in the kitchen with their mom instead of just holing up in their room," he says.
Meanwhile, researchers at Mount Sinai School of Medicine in New York have begun testing a protein called insulin-like growth factor 1 in people affected by a mutation of the SHANK3 gene, also a cause of autism spectrum disorders. Tests in mice with the mutation have shown that affected communication deficits in the animals' brains, particularly those related to learning and memory, appeared to correct themselves. "If you can have medication that targets the core symptoms of autism," says Alison Singer, president of the Autism Science Foundation, a nonprofit organization focused on research, "to me that's the holy grail."